CHEMOBRAIN.....In The Fog

ONE LAST POST ... For my mom

2021-06-20T15:55:00.003-04:00

My mom is gone. In a span of less than 15 years, I went from being the granddaughter of a vibrant 94 year old to being the eldest in the family.

In a manner of speaking, with one final breath, I became both an orphan and The Family Matriarch and it is heartbreaking.

My grandmother died in March of 2006, just before I stepped into the maze of learning I had invasive lobular breast cancer. While I was still on chemotherapy, my dad was diagnosed with an early stage lung cancer. In July of 2007, he died of complications from the chemotherapy. His death was likely related to the many surgeries he endured for unrelated issues, weakening him in ways none of us could understand. One month after his death, my mom was diagnosed with a second primary breast cancer. Her first diagnosis, at age 49, was in 1987.

Many of you know already know my messy family medical history with breast cancer. My mom was a two-time five-year survivor. Until she wasn't. In January of 2013, we learned her cancer had metastasized to her bone. It was believed, but never confirmed, the disease spread from the first, more aggressive cancer. In other words, it was a late metastasis. It was 26 years after her initial diagnosis. Or, it was from the second time. Regardless, she still hit that magic 5 year celebratory mark. Both times.

I question things that I should not question. We learned in May that the treatment she was on for 18 months was no longer working. In the midst of a pandemic, when a change in care was warranted, there was no way of having a productive discussion about next steps. She was routinely scanned every three to four months. When the scan in May was not good, our doctor called her. I was always there for those appointments but no one was permitted inside with patients and the discussion about next steps was not so much a discussion, but rather a phone call from the doctor explaining "this is what's next."

There would be no more targeted therapy. There would be no more oral medication. Next up was an infusion of a chemotherapy agent approved for use in 1996. The only thing mom did when this was discussed between her and the oncologist was ask him to spell the name of the drug they would be using. After she spoke to him, she called me.

I was conflicted. I didn't think that this path was necessarily the best path. In my heart and in my mind, I wanted to have a discussion about transitioning to palliative care. I had the opportunity to address this idea with the oncologist. He said he would put it on the table but having spent years seeing my mom each and every month, he knew her as well as anyone. "Your mom is going to want to do something." And I know he was right. So I stepped aside and watched with a heavy heart as it all played out.

The first chemotherapy beat her up badly. She was spiking fevers, she developed an infection, she had no appetite, she was dehydrated. She was in and out of the triage area on several separate occasions to be treated for a variety of issues. After the very first infusion, it took a month before they could attempt a second round with a 50% dose reduction. That, too, beat her up badly. She spent five days at my home after one triage visit where she was so weakened, it was unsafe for her to be alone. Either I would stay with her or she would stay with me.

In August, another scheduled scan showed she was not responding to the chemotherapy. After a series of discussions, I was granted an exception and allowed to accompany her for her visit. A clinical trial was offered and mom signed the consent. The next day, we learned she wasn't eligible for the trial. She was disheartened. I was annoyed. She met the primary eligibility criteria but the manner in which they would be measuring progression of disease was a problem. In my mind, now with an arsenal of knowledge about clinical trials, this was a systemic failure. It was a failure in the design of the trial. It was a failure by the team assessing her eligibility for not looking at her complete medical history (and yes, they had access to all of it) before offering the trial in the first place.

So, in the beginning of September, she began yet another cytotoxic agent. Another old drug. Where is all of the progress when the best that could be offered was a drug that was approved over fifteen years ago. Again, she was beaten up very badly. It took eight days for her to feel better. I was with her on September 16. I recorded the visit. I just listened to it the other day. She was glossing over things and I was interjecting with the things she seemed to have forgotten. I know it wasn't intentional on her part. The mind has a way of allowing us to think "It wasn't really that bad." But, it was. The doctor wisely opined to mom, "She's here to keep you honest."

Again, a dose reduction was put in place and September 16 was the very last day mom felt "normal."

She fell on October 3 and she died on October 19. She was laid to rest on October 28.

I saw her a couple of times before October 3rd, and I spoke to her every day. The morning of October 3rd, I called before 11AM to see how she was feeling. The day before, she told me she was regaining her energy a bit. I didn't think much of it when she didn't pick up the phone. I thought she might be in the shower believing her words the day before when she said she was feeling a little better each day. It was clear, however, she would not continue this regimen. She said she was done with chemo, but she also said, "If there's something not quite as harsh ..." and I let her trail off with her thoughts.

I knew we were ready to have that all important talk about quality of life as the single most essential component for what would come next.

After leaving the message on Saturday morning. I got distracted by a couple of things and hours went by before I saw my aunt's phone number come up on my phone. Both of my aunts went to mom's to get her out of the house. They found her on the floor, in her bedroom, barely conscious. Before calling 911, they called me. "Anne Marie, she's delirious. She's confused. We can't lift her." I'm sure that entire call, which felt like it was a very long time, was likely under a minute. "Call 911, and I'm on my way to the hospital. I'll be there before the ambulance arrives."

As I was heading to the hospital, a bit of a glitch occurred. The EMT's were planning to take her to a different hospital. My aunts were pleading with them. "Her daughter has all of her medical information. She's likely already at the other hospital." Again, my phone rings. First, I heard my aunt and then an unknown male, "This is EMT, Michael. What can you tell me about your mom?" I willed myself to disengage from the crippling fear and the emotional upheaval I was feeling. I began speaking in medical terms. Mid-sentence, I heard Michael call out to his team, "We're going to Huntington Hospital."

I waited at the ambulance bay and as soon as I saw the ambulance, I felt the tears falling. I blinked them back quickly as EMT Michael jumped out. "Anne Marie?" I identified myself as I watched them open the doors and remove my mom from the back. "Come with me," he said and I recall replying, "They aren't going to let me just walk in the trauma area. COVID and ..." He simply said, "Walk beside me and let's see what happens."

The doctor in the emergency trauma area was wonderful. As the team jumped into action, administering antibiotics and placing her in warming blankets, I learned she was septic and hypothermic. Her condition was grave. The doctor asked me what mom would want under the circumstances. Still in logic mode, I stopped her before she had to go into a lengthy explanation. "I need to sign a DNR. Please get that for me." Emotionally, that was the hardest thing I have ever done in my life. Logically, I was acting in accordance with mom's wishes, and as her legal proxy as laid out in documents both written, and based on many discussions.

The doctor continued to try to piece together how long she might have been on the floor. I knew she didn't answer the phone at 10:30AM but who spoke to her or saw her on Friday night. The best estimate? She was on the floor for possibly as long as 12 hours. Just the thought of that is heart wrenching. I remained by her bedside in the trauma bay most of the time, only being asked to sit in the waiting area when they were going to take her for additional scans and x-rays to see if she suffered any broken bones.

In no time, I was being called back into the trauma area. The technician who was bringing me back was saying things. It was just a jumble of words I couldn't comprehend. "Not the best news." "It's not good news." And, as I watched them scrambling to find a chair so I could sit down, my mind was screaming.

"They are going to say something awful. They are afraid you're going to faint or fall down in horror. This seeking a chair thing is taking too long."

No one said a word until they found a chair they deemed clean enough for me to sit upon. Suddenly, I was thrust into a world about which I knew nothing. I was hearing fragments of sentences. Hit her head, bleeding in the brain, NO - wait, bleeding between the brain, swelling. It was the neurosurgical nurse practitioner who was speaking to me. The on call neurosurgeon was on his way to the hospital.

And here I stood, at yet another decision point. Standing at the foot of my mom's bed, it didn't take a rocket scientist to see the precarious situation she was in. The monitor recording her body temperature was still 93 degrees. I tried whispering in her ear. She opened her eyes, barely. I am told she was telling the EMT's her name and her date of birth as they were placing her on the stretcher. Credit the medical teams who've treated her over the years. Those of you in medicine and those of you wearing that bracelet know exactly what I mean. It embeds itself into our brains.

The neurosurgeon arrived. With a DNR in place, they wanted me to consent to surgery. Specifically, a craniotomy. They explained this had to be done immediately. There was a substantial subdural hematoma on the left side of her head. It shifted her brain slightly. As I was trying to engage my critical thinking, I knew I was not capable of making a well-informed decision. While I felt no pressure, what I knew was that there was a sense of urgency attached to my decision. We barely discussed the possible outcomes of such a surgery. All I could grasp in that very moment was the gravity of my mom's immediate health issues which, with this news, just became exponentially worse. What I should have said to this surgeon who, in very poor taste, opted to share, "Well, we're surgeons, we like to cut," was this. DO YOU SEE THE DNR above the monitors? As IF I'd consent to emergency surgery using an on-call doctor on a Saturday night - and yes, all of that was racing through my mind before he decided to share his love of cutting.

I remember the surgeon asking me if mom was experiencing pain in her upper spine. I recall his astonishment when I told him she complained of no pain. He explained, based upon the scans, he would have expected she would be in terrible pain from what he saw. Ultimately, I told him I could not consent to any surgery in that moment. I recall telling him I believed in her current condition with all of the other confounding factors, I didn't see how it would be possible for her to survive three hours or more under general anesthesia. I clearly remember saying that I felt I would be the one signing her death certificate if I consented to the surgery. I think I mumbled something about seeing how the present circumstances play out before I could even consider what might come next.

Many family members were milling around the waiting room of the hospital as I paced between the trauma area and the waiting room. Everyone was masked, everyone was maintaining distance in the primarily empty waiting room. At some point after 8PM, the shift changed in the waiting area and I presume, also in the trauma area. Until that point, when I asked to go check on mom, the desk knew I was already at her bedside and they unlocked the doors. Now, we were being told we could not remain indoors. I could insert something in here about continuity of care after a shift change ... because I watched this same thing happen when my dad died, but I'll save that for my advocacy efforts when speaking to those who are equipped to effect meaningful change to benefit all patients. On this day, everyone left and went into the parking lot. I asked to see her before leaving so I could get an update from the medical team. Instead, they had a nurse come out to speak to my brother and I. She came out, told us they were waiting for the results of her COVID test which would be approximately four hours, after which, they would be bringing her to the floor. Because of the DNR, she would not be taken to the ICU.

Mom was in a hospital that was piloting a program in NYS to allow for visitors. They instructed me who to call in the morning to find out where she was, and I would be called if anything else was required of me. Frankly, I was waiting for a call to tell me she was gone. I'm sure I didn't sleep at all. When I called in the morning, I was told she was in the cancer wing at the hospital. They put me through to the nurse in charge of her care. I told her that I already arranged for her records to be sent to them the night before from her primary oncology team at Memorial Sloan Kettering. I told her they were faxed over and of course, they weren't on the floor. I gave her the fax number the hospital asked to have them sent to. I don't remember when I did this, but I do know it was in that time before she arrived at the hospital, I notified the emergency number at MSK so they could assemble whatever information they felt the hospital would need. I would learn over the next days, MSK recently began a pilot program, too. They worked with a third party to serve as an information bridge. Mom's medical info was flowing bi-directionally between the community oncology group who has privileges in the hospital and the team at MSK. Every single afternoon, I got a call from a nurse at MSK to assure me they were updated on everything.

When I spoke to the nurse on Sunday, I explained there were three other siblings who wanted to see mom. I knew COVID restrictions only allowed for one visitor each day. There would be no swapping in and out. The nurse granted special visitation rights because her situation was critical. We all arrived at the same time. I had copies of the most recent sets of labs so they could see how everything had been trending over the past couple of weeks and I had a written report of a head CT done in June. I brought them with me. After the desk confirmed with the nurse that we would be allowed to tag in and out, I was the first one on the floor. I spoke to her nurse and gave her the records. She told me what was going on and then said I should go into mom's room. She told me I was going to be as shocked as she was, that from the early morning when we spoke until now, mom had woken up. She told me she was awake, "Just go in and see for yourself."

I walked into the room and mom was up in the bed with a food tray in front of her. Each of us had a million questions for the other. I was able to answer hers. She wasn't able to answer any of mine. She told me she opened her eyes and knew she was in the hospital but didn't remember how she got there. Does anyone know I'm here? How did I get here? Your brother is upstate ... I explained to her that she was brought in an ambulance. That seemed to stun her. I asked her if she remembered anything. It was clear she had no memory of falling. She didn't remember if she was in bed or in the recliner where she would often sit before getting into bed. I could see her doing mental gymnastics and I simply asked, "What is the last thing you remember doing yesterday?" When she couldn't recall, I let it go and when I went downstairs to switch with one of my siblings, I told them to gently try to discourage her if she started trying to press herself, to will herself, to remember what happened. My horror at the the thought of her lying on the floor for hours somehow dissipated knowing she wasn't there trying to grab for a phone, or perhaps was calling out for help. I know if we didn't have this conversation, my mind would be in a very dark place for many years. Grateful.

The resident in charge of her care came in and asked to speak with me in the hallway. I refused. I told her that it was clear my mom was lucid, understood where she was, and that she had the right to be involved in anything she wanted to say. My mom, at this point, didn't know about the DNR or, more importantly, about the head injury. I began. I told my mom she was in very bad shape the night before. I told her I signed a DNR. She looked confused. I told her, "Mom, if your heart stops, they aren't going to do anything to restart it. Is that what you still want? I can have them tear that up, but I need you to tell me what you want. Last night, you couldn't tell us." She just sort of shrugged and gave me no clear answer.

Then the resident explained she suffered a bleed in between her brain and her skull. I filled in the information as I could see she wasn't able to fully comprehend any of this. I told her we would talk to a neurosurgeon that afternoon and together, we would decide what to do. When the neurosurgical NP came into the room, I was downstairs. My sister was in the room. She asked the NP to let her get me on a FaceTime call. Instead, the NP told her to sit tight and she came downstairs to bring me up so both of us could be in the room with mom as she explained what would happen. We were told the bleeding seemed to have stopped and told us this was very much a day to day situation. She explained what surgery would entail in great detail and then suggested an option that was much better for mom to accept. We were all in agreement. In about three weeks, the blood would begin to break down, some would possibly be absorbed by her body and what remained could then be drained using a small burr hole.

Over the next ten days, we took turns visiting mom. She was awake. She was trying to eat. They were doing physical therapy. The community oncologist saw her daily. They were fighting to discharge her and we were pushing back on that. At one point, my mom was telling other siblings she wanted to go to a rehab facility. I got on the phone with her and very carefully explained that suggestion was simply not an option. I told her we couldn't ensure her safety from COVID in a rehab facility, and that she would have family and professional help round the clock in her home. She wasn't happy about aides in her home until I assured her many times that there would NEVER be a time one of us wasn't also there. Again, she mentioned going to rehab and then, she realized it would be within a nursing home. I didn't have to say another word. I'll refrain from political commentary on what happened in NYS nursing homes. You can google it, and whatever you find, multiply by about a million. I personally, know many who have loved ones in nursing homes. The stories are horrific. She said that simply wasn't an option in the midst of a pandemic. I once again reassured her that we, all of us, were prepared to man her home and oversee her care 24/7 with an aide to help us.

Plans were in place for her to be discharged. Until ... I got a call from the same resident who didn't want to speak in front of mom explaining she pulled the discharge. She began talking about an infection and I asked her to explain. She didn't which I found a bit bizarre so I began guessing. "Based on what you're saying, it's either unresolved sepsis or it's C-Diff." Ultimately, I had to get my answers by calling the nurse who confirmed they were waiting for the results of a C-Diff test which, of course, was positive. I explained to those who would be the designated daily visitor the protocols for gloves, gowns, masks (and changing the mask upon leaving the room). We continued to ready her home for mom's eventual discharge - hospital bed and other necessary equipment was delivered. I went to her home after ordering gowns, gloves, and preparing bleach solutions and safety instructions to get the place in order. I recall the day I walked out knowing everything was in place. I knew everything was in order and this fleeting thought popped into my head: She's not coming home. I shoved it out of my head.

She was weak. She couldn't get out of the bed without the help of two aides. She was barely eating. On October 12 and 13, I was the designated visitor. During my visit on the 13th, she seemed to be much more tired than she'd been since the day after her arrival. When I was leaving, I spoke to her nurse. It was the same nurse, as luck would have it, who was caring for her that first day on the floor. All I had to say to her was that she seemed worse than she was any of the days, including that first day. She ran into the room with me. They began to administer fluids and the following morning, things began to decline rapidly.

An interim head CT showed the bleed stopped, the area of blood was significantly less and already being reabsorbed, her brain shifted back, slightly, to its more normal position. The morning of Wednesday, October 14, my phone began to blow up. She sounds "off," she was on the phone with her cousin when the nurse took the phone to tell her she was going for another head CT. I immediately called the nurse. I remember someone saying something about not knowing results for 24 hours. I knew that wasn't the case, not with imaging where they could see in real time what was happening. I knew if this wasn't good news, I'd know immediately.

The same neurosurgical NP who was helping us understand what had happened the day after mom's admission got on the phone with me. All she was able to say was that the bleed started again and the neurosurgeon would be calling me shortly. I don't think I had to wait more than five minutes.

The neurosurgeon began explaining what was happening. In this moment, I was grateful for all of the advocacy work I've done. Somehow, I was able to detach myself from one of the most emotionally charged moments of my life. I willed myself to engage all of my critical thinking skills. I listened as the surgeon began to explain everything. He was kind. He was compassionate. He stopped frequently to ask if I needed anything explained. He was definitely speaking in more medical terms but I suspect that was because he already had a heads-up regarding my health literacy skills.

I asked about the risks involved with the surgery. I asked about the outcomes. It took me less than 30 seconds to realize there was substantial risk. If she survived the surgery, I could expect my mom to have her skull open for many days to allow the swelling to reduce. If she survived that, I could expect an extremely high likelihood she would not be able to speak, or feed herself, or walk. He was basing this information on the location and the size of the bleed. He was also, I would later learn, basing this on his previous experiences in situations with people whose condition closely mimicked my mom's. Without consulting anyone in my family, I made a decision. This was not the way my mom would have wanted to spend the rest of her days. That was clear on her health care proxy although I wouldn't see that until many days later. In what can only be described as hilarious, the documents I needed while she was still alive: the power of attorney and the health care proxy were sealed by mom with her will and the trust she set up. Sealed like Fort Knox with what appeared to be an entire roll of duct tape. I was making decisions based upon old documents. Thankfully, when I did wrangle that folder open, her instructions were more extensive and incorporated every decision I was forced to make. Grateful.

I also knew, in the back of my mind, what was coming, sooner than anyone else may have realized. She was down the rabbit hole with the progression of her cancer. What no one but me knew was this. I had seen a brain scan from less than a year ago where it indicated there was a 50% chance the lesions they saw on a head CT were indeed brain metastases. It was the wording: Consistent with, likely, possibly and each had an associated percentage. The word used on mom's CT was the word that meant 50%. For months after seeing that, I chose the glass half full view. That means it's 50% chance NOT. In this moment, I took the realistic view. Remembering the doctor asking about the area in her neck, remember her primary oncologist telling me he'd get her to her next birthday (this was end of October, her birthday would come in early March), watching others in the last weeks or months of disease navigating through excruciating bone pain, the need for oxygen, it was easy for me to say I didn't want them performing the surgery.

It was only AFTER I made the decision that the surgeon validated my choice. He told me, from the perspective of the family members who opted for this surgery on behalf of their loved ones, every one of them regretted their decision. They didn't fully assess what reality would be after the surgery. He told me, particularly under the circumstances, "You made the most merciful decision FOR YOUR MOM." And that's the thing. I couldn't decide based upon what would make others happy. I had to give voice to my mom. What would she want and what he described is not what she would want.

Things moved very quickly over those next couple of hours. I was told that anyone who wanted to say goodbye should get there within the next 24 hours, and more likely, it would be best if they arrived within the next 12. "Things are going to deteriorate, and it's going to be rapid." I sent a group text - not the best means of communicating but certainly, in this instance, the most efficient. Immediate family converged on the hospital and thankfully, end of life protocols were in place and everyone was allowed in her room. She was barely conscious when I arrived. She willed herself to open her eyes when I told her one of her grandsons just came to see her. She greeted him by name. Then one final time when another grandson came. She opened her eyes, she looked at him and she said what would be her last words. "Hiya .... " and she greeted him by name. On the afternoon of October 14th, she uttered her last words and slipped into a peaceful slumber.

The next five days were torturous for all of us. Everyone that needed to be there was there. There were no tubes, there were no monitors beeping. She was surrounded by the love of family. It was explained to me that engaging the hospice team was possible but not recommended. There is some quirky thing with the Medicare rules. If the event she didn't die within a specified number of days, the hospital would be forced to move her to a facility. It could be any facility where there was an available bed. She was in a hospital that is five minutes from my new home and close enough to everyone else family, too. The facility might be an hour or more away. And, the visiting policy might not be as accommodating.

I knew it would be important to mom to receive the last sacrament of the Catholic Church. Her parish priest refused to come. I was livid. He personally knew my mom and she made many donations to the church right up until she fell. With the help of the hospital chaplain, she arranged for a priest from a different parish to be at my mom's beside within an hour of calling. I will be eternally grateful to the chaplain and the priest. With that off my head, I was thrust into a new role. Once again, I found myself using skills I'd learned "on paper" in a real world situation. I became the head of mom's hospice care.

Specifically, with the help of the social worker on the floor and the nursing staff including the nursing supervisor, I summoned everything I could from things I've learned along the way about end of life protocols. I encouraged everyone to speak to her. We stroked her arm gently so she might feel our physical presence. I wrote down each time morphine was administered so I could start asking them again at the three and a half hour mark. Only once did the girl at the desk push back with "It's too soon." Fortunately, the nursing supervisor happened to be at the desk and quickly overrode that response, telling her to call the doctor. I was determined my mom would be given morphine "on the clock."

She died just before 3PM on the 19th of October in the midst of the worst public health crisis. I was seated beside her. We were playing music as she drew her last breath. It was her music, doo-wop era music of the late 50's and early 60's. I didn't know what else to do. I didn't know why she was holding on after five days of being in a non-responsive state. I was holding her hand. She was in no pain. I kept telling her it was ok, I would be ok, Daddy is waiting for you, we will all be ok. For five long days. This day, her breathing was beginning to get shallow. I could see the end was near as her breathing began to slow. I am grateful she died while I was there. Had it happened in the middle of the night, I know they would have told me it was peaceful but in my mind, I suspect I would have gone down a dark hole. "Sure they're telling me it was peaceful, but she was alone and it all likelihood, she might have been gone for an hour or more before they even realized she was gone." So, yes, gratitude that I was at her side.

I suspect she knew the end was coming before she fell on that fated night. During one of our many conversations, she told me she didn't want a traditional mass. She wanted to be cremated. She wanted a graveside service. Her ashes would be interred with my dad, next to her brother, beside my dad's parents. She told me we could hold a memorial mass in her honor IF and when we wanted. So, I began making more decisions.

And, as I was making these decisions and funeral arrangements, yet another monkey wrench got thrown into the mix. Because hers was a death that was considered an accident, after the funeral director already removed her body, the medical examiner refused to sign off on the death certificate. The doctor at the hospital called. The funeral director called. Each explained that I would be called to the ME's office for a conversation. They were doing their job and thankfully, my emotions were sealed in a compartment. I wasn't angry. I wasn't upset. I was just numb and would jump through whatever hoops they asked of me so that I could lay my mom to rest. At one point, I remember looking up saying, "I hope you're getting a kick out of this, mom."

The Medical Examiner called me. She was kind but firm. "Tell me about your mom's health." I asked her where she wanted me to start and I remember her saying I should start at the very beginning and she would tell me if I should fast forward. So, I began, "In 1987 ...." and I told the whole story. The early diagnosis of cancer at 49 years old found on her first mammogram and methodically went through all of it concluding with what happened when we learned she was no longer responding to treatment in May and how those last ditch efforts just kept making her weaker and weaker. We spoke for at least an hour. At the end, she thanked me and said she would be releasing her.

Fortunately, NY and specifically, Long Island, was at one of the lowest COVID positivity rates when this happened. We were outdoors at the cemetery and there were restrictions on the number of people who could be at outdoor "events." But, I had no control over who knew about the service and when I arrived at her grave with the funeral director, I looked out at many groups of people standing in smaller groups. Everyone seemed to be in their own bubble of safety. Afterwards, I was able to piece together that there was about 80 people scattered around, standing in the pouring rain, as prayers were said and mom was laid to rest with my dad.

My brother began building a special garden on his property, a project he began during those five days in October and is an ongoing project. After she took her last breath, we were on a group text where he was sending pictures to all of us. The garden is beautiful. I told him I was going to order a stone but I had to think carefully about what should be etched on the stone. And then, I remembered. The song that was playing when mom drew her last breath would be perfect. I ordered the stone in October. It arrived in April.

We emptied her home and it was recently sold. Impulsively, as I left the closing, again, with COVID restrictions still in place, I was the only family member present, I realized I was very near the cemetery. I drove to her gravesite. When I was leaving, I was stunned at the exit as I was flipping around the radio stations to hear this blaring from my car speakers ...

It's impossible for me to NOT think she was watching over me as I put all of her affairs in order. So, every night when I see the moon shining down, I will forever remember my mom.

Not a single day goes by when I'm not thinking about her, missing her, grabbing the phone to call her. I have had the support of many of you and for that, yes, grateful beyond words.

Yesterday was eight months that she left this earth. And today is Father's Day. It has taken me this long to share all of these details and to say for certain, this will be the last post I will make.

My chemobrain is resolved.

My marriage is dissolved. Finally, and I'm happy and free.

My reconstructive implants have been redone - twice (November of 2019 when mom took care of me and redone in February of 2020 when I had lots of people jump in to help with my recovery).

I took back the only name that matters, the name I was born with.

I bought a new home and moved in right before the world as we know it came to a screeching halt.

And throughout all of that, I said goodbye to my mom with gratitude for the life she gave me and with even more gratitude for the way hers ended. On her terms. Without pain.

My mom and dad will always be the wind beneath my wings. With this blog, my mom was always my biggest cheerleader. So, it is fitting to say ....

With this post, I bid farewell to this chapter of my life. I'm still around - I'm on twitter, I'm on Facebook although I haven't checked that platform at all since right after I had to login to my mom's account, and my email address is on this page, too. I'm entrenched in research advocacy and I'll continue doing that for as long as I am able to add value at the tables where I am seated.

This blog was the vessel that opened up so many doors but those of you who read my rants, cheered with me, cried with me, laughed with me, got outraged alongside me. Each of you has carried me to this place where I can now officially turn the page and begin writing the next chapter. The blog needed closure and this homage to my mom seemed the best way to do just that.

Thank you all for helping me in ways you might never fully appreciate.

With love to all who find their way here,

Anne Marie

xoxoxo

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I HAVE A SECRET ...

2019-06-19T09:00:00.000-04:00

.... AND,

I've been in hiding with my secret since May 4, 2017.

How is it possible that I even remember the exact date??

Well, it goes something like this ...

Technically, it started in September of 2014. I received an email from someone asking me about chemobrain and my ongoing challenges. We went back and forth in a series of emails and then, I dropped the ball. Shocking? Not so much given all of the circumstances ...

Fast forward two and a half years ...

April 2017 ... Another email from the same person. It was in the midst of AACR 2017 followed immediately by a date at USC to do some work on CancerBase. Although I didn't know it at the time, those ten days would be the last time Lori and I were involved in any projects together. Then, I was off to the spring SWOG meeting. Throw in some divorce related nonsense, sprinkle in the move from a rental apartment to my condo which was in final renovation stages - and it was a recipe for a month of commotion - not necessarily a great combination when one's brain isn't firing on all cylinders. I was all over the place - literally and figuratively.

However, this time, I didn't drop the ball in my correspondence with David and his questions about my lingering, and at times, debilitating cognitive issues. We set up a video call and I was intrigued by the things he shared during our first conversation.

He offered to send me products he felt might be helpful. I agreed to take a look. A bit skeptical, yes, but desperate times called for desperate measures. I was at a point where I was ready to try adderall or provigil - both pharmaceutical products, either would be "off-label" use, both come with side-effects. I was finally untethered to the dreaded pill case. Just months earlier, I completed nearly ten years of femara and I was grateful to be done with the need for any sort of prescription drugs. Thus, there was lots of hesitation to seek out yet another medication.

Within days, a box arrived. The labels were on the bottles and lots of literature was included inside the package. They were nutritional supplements. Fully prepared to toss them aside if I saw anything that was over the top, yes, I was skeptical. I studied the materials he sent, looked at the ingredient labels to see if anything in the products was what I would consider to be a mega dose. I'm not one for vitamins or supplements in any dose so I wasn't about to start mega dosing anything. I put on my research advocate hat and began analyzing everything.

We spoke again and on May 4, I began taking the supplements. The only request David made was that I make an attempt to document anything I might notice - the good, the bad, the ugly. Just keep notes. I seem to recall thinking, "Notes of what? I can't remember to keep notes and even when I do, I have no earthly idea where those notes might end up - buried under a pile of other 'notes' ..."

I first realized something was different when I had to decipher a massive amount of paperwork. It need to be sorted through, analyzed, put in some sort of logical order for another person to be able to easily understand. I cleared a workspace and dumped reams of paper in front of me. I began sorting, analyzing, making notes, coding each batch of papers. Normally, when I began this type of project, I feel the anxiety begin to well up. There were times I would feel myself starting to shake, yes physically shake, because it was all too overwhelming. On this day, just weeks after starting the supplements, I intuitively went from one batch to the next. I don't know how long it took but I do know it had to be less than two hours. And I know this because I had a list of errands to run. The list involved running all over my new neighborhood with a mess of unrelated stuff. What began at noon at my counter concluded before 6PM.

The pile of papers was neatly organized complete with a master list on a single sheet of paper with numbered bullets. Every errand was done. A couple of hours later, I was sitting on the sofa, jolted by my brain screaming, "WTF??? What happened -- how did you do all of that today?"

Before the supplements, I tried everything. I enrolled in clinical studies evaluating brain games, exercise, sleep, mindfulness. You name it, I tried it. Nothing was helping me in the real world. Yes, I may have gotten better at the brain training but it wasn't translating over to helping me with my life activities. Yes, I'm conscious of the importance of sleep and I try to maintain a routine sleep schedule. Mostly, I'm successful and achieve a minimum of 7.5 hours of sleep. I practice yoga - the stretching helps and my instructor continues to incorporate mindfulness into my practice and during the practice, encourages me to remember the importance of connecting with my breathing. Despite every suggestion out there for cognitive improvement, and I faithfully stuck with every one of them, none helped with the real world situations that always arise on a daily basis. The real world is called life.

Those of you who know me well, also know I'm very involved in research advocacy. I don't know how or when the products I'm taking will be part of a research study. I speak to David and his wife, Michele on a fairly regular basis. There is a group of us who have been the "guinea pigs" - in a most unscientific fashion, just using our notes building a body of anecdotal evidence. We know cognitive issues are real. There is a growing push to understand why this happens so we can find ways to address these problems.

With so many different factors: type of cancer, drugs used, surgery and anesthesia, long term maintenance medications, normal aging ... there are many areas to explore. I know plenty of people in the research world who are doing just that. Many have put forth proof that the condition is real using brain imaging. And far too many are dismissive - some because they have no concrete solutions and others who choose to believe this massive disruptive fallout is a convenient excuse we might use because we *failed* to get things done. (Note to the latter group: we didn't FAIL. We either forgot or simply could not accomplish and our frustration with ourselves is bad enough - in other words, validate, don't criticize!)

Without going into all of the research, let's just leave it at this. Physiological differences continue to be observed in cancer patients. Cancer Related Cognitive Impairment is a phenomenon that stretches to persons who were not treated with chemotherapy but "chemobrain" seems to be the term that is most widely used.

So what's my secret? The supplements are "multi-targeted nutritional supplements" and they have helped me in ways I can't even describe. I won't speak for the other "guinea pigs" except to say most all of us feel like things are better. David, whose story and background can be found on his newly launched website chemobrain.com, is brilliant. He's conscientious about everything he does and was intent on improving on the products I've been taking, and then, making sure he put together a trio of products that makes sense and addresses brain health, vascular health and gut health. With a leap of faith, he decided to seek out the best and the brightest to manufacture the products and launch his own company.

This isn't intended to be an infomercial or a medical claim. This is simply me, sharing my personal experience. Will it work for you? I have no idea - I just know there's nothing else out there that was helpful or provided meaningful improvement for me until I started taking the supplements. David and I frequently talked about this: Could it be this simple? And his acknowledgement that it may not work for everyone but even if it works for a small percentage of people, that number would be substantial given the number of persons living post cancer treatment with cognitive difficulties.

As for my next steps, I'm determined to find someone - anyone - several someones in the research community who might be willing to study this to see if clinical findings and any biological markers or neurological imaging matches patient reported outcomes. We both know the way to do this is with a randomized study but those take lots of time and lots more money. David took a leap of faith by launching the products. I do know he would have preferred to have these rigorously studied first but life doesn't always play out the way any of us would prefer. Instead, he chose to take this leap of faith because he believes in the products and he genuinely wants to help those of us who might benefit.

Cancer treatment is grueling. Having to accept a "new normal" is a hard pill to swallow. I was far better at life with the "old normal" brain and that brain seems to be back.

MY DISCLOSURE:
I am not employed by TheChemobrainCompany and I have not received any compensation from David and/or Michele Salo or from their company in any capacity whatsoever.

David has been sending me the supplements at no cost to me for almost two years. In the spirit of full transparency and total honesty, I share that with all of you.

Last but not least, I will be on and off the grid a bit over the next couple of days - family issues and "stuff" that requires my physical presence. Comments will be responded to as soon as I possibly can. Meantime, please play nicely in our sandbox!

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It's Time #ToPreventBreastCancer

2018-12-06T09:30:00.000-05:00

As my mom begins a new treatment protocol for metastatic breast cancer, I've frequently shared that I understand the need for research across the entire spectrum. Having "skin in the game" across a trajectory that spans from prevention of death, to prevention of progression, to prevention of metastatic disease in early stage patients and extending to prevention of breast cancer in its entirety, I've agreed to play a role as a judge with the Californial Breast Cancer Research Program (CBCRP) in their bold initiative to prevent breast cancer.

Please visit topreventbreastcancer.org to learn more. Submit your bold ideas and let's be the generation that moves this ball forward in a meaningful and effective way so that we might stop this disease in its tracks.

Quite simply, it's time.

Deadline for submissions, January 7, 2019, is just a month away. AND ... Advocates are encouraged and invited to submit their ideas.

Read more from the director of the program Dr. "Mhel" Kavanaugh-Lynch.

A quick overview:

The Global Challenge to Prevent Breast Cancer is a competition designed to surface game-changing ideas to help launch an entirely new direction for breast cancer research — focused on primary prevention.
This challenge, sponsored by CBCRP, invites researchers, advocates, and others interested in breast cancer prevention to participate.
Winners will receive cash prizes, feedback from respected researchers, and the opportunity to present their idea to prominent leaders in the field. The most promising ideas will frame CBCRP’s future funding strategy and will be further developed in California with $15 million in grant funding from the program.
Despite significant advances in breast cancer treatment, people continue to be diagnosed with breast cancer at astounding rates — rates that have remained essentially unchanged over the past three decades.
Of the approximately $2 billion spent on breast cancer research each year, less than ten percent is dedicated to prevention research. The opportunity for discovery is immense, and the time for breakthroughs is now.

Know someone whose research is focused on primary prevention? Please DO share with them! I'd like to be up to my eyeballs reading submissions ...

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Complimentary V. Alternative Medicine: Yes, It's Different ...

2018-11-02T12:09:00.000-04:00

First some definitions and then, a few thoughts.

Complementary:
Combining in such a way as to enhance or emphasize the qualities of each other or another.

Integrative:
Combining two or more things to form an effective unit or system.

Conventional:
Based on or in accordance with what is generally done and believed.

Alternative:
Relating to activities that depart from or challenge traditional norms.

Quite simplistically, Words Matter.

Quite personally speaking, we know what has been shown to be effective and we continue to seek better medications to treat the multitude of diseases that fall under the cancer umbrella. There is only one departure from conventional therapy that I believe in and that is participation in an approved clinical trial. Period. End of story. I am in the school of "Snake Oil Not Welcomed Here." That's my disclosure on my personal beliefs.

Last week, I was invited to attend the annual meeting for the Society of Integrative Oncology. The MD's and PhD's from world renowned cancer centers that presented their findings did so using the same scientific methods and with the same caveats that I've seen in presentations at meetings like AACR or the San Antonio Breast Cancer Symposium. The presentations from the podium in the sessions I attended were all randomized trials with control groups. Limitations of each study were clearly outlined. Many of the studies were designed using small groups of people. In almost, or possibly in every case, it was stated that the studies were exploratory in nature and that further studies using larger groups of people would be needed to confirm the findings or replicate the results. That's the way we learn in the world of science. Confirmation and replication are key components and each is essential to guide changes in practices.

Cancer treatment is grueling. Chemotherapy is poison. Radiation burns through tissue. Surgery cuts into our bodies. As we move toward precision medicine, plenty of therapies are more targeted for different patient populations but the promise of precision medicine for every cancer patient is still beyond our grasp. Specialized treatments like immunotherapy which are highly effective in certain sub-types of specific cancers like melanoma and lung cancer, have been shown to be highly effective in many, but in some, there may be serious complications with the treatment. Just listen to the television commercials, there's no shortage of those.

While in active treatment, many people suffer with debilitating side effects. Well beyond active treatment, many of us live with long term or late effects of the treatments we received with the hope of achieving the status of no evidence of disease. It is worthy to note that few treatments are truly curative and the word cure applies to even fewer cancer types. When a researcher states that the patients were treated with curative intent, that is simply a means of differentiating the stage of the cancer in the group of patients on the study.

Most of us have already gotten the memo on the importance of maintaining a healthy diet, the need for exercise, and the importance of sleep to help restore our bodies. Not enough of us, myself included, are able to stick to every aspect of each of these cornerstones but, speaking personally, I try. Not one presentation at this meeting even hinted at the notion that diet, exercise or sleep could prevent primary disease or stop progression of active disease, or prevent local or distant recurrences. No one I spoke with suggested, in any way, shape or form, that we use complementary therapies instead of conventional treatment.

The focus of the use of complementary therapies was as a means of assisting with quality of life issues experienced by so many of us. They were presented as a possible option to make our conventional treatments easier to tolerate allowing us to continue treatment for as long as recommended, or as a way of dealing with long term and late effects. Yes, acupuncture was presented in several of the sessions. Mind-body connections using yoga or other meditative methods was explored and presented. Any and every time, nutritional supplements were mentioned, caveats were included to clearly state that some could negatively impact the efficacy of conventional therapy and that every one brought up by a patient receiving any sort of active treatment should be thoroughly investigated by the treatment team to properly guide the patient.

It is particularly noteworthy to mention that in the studies I saw presented, the researchers showed not only patient reported outcomes using validated measures, but they also showed physiological changes in the things in our bodies that are believed to be driving some of what ails us. Without getting all science-y, the slides showed the same patients that reported symptom reduction in whatever was being looked at, a corresponding slide was presented to show, for example, a reduction in systemic inflammation within the body. Inflmmation is known to cause all sorts of problems.

Other physiological changes were reported and genetic markers were identified in different studies but rather than speak too far above my pay grade, it's best to leave that right there. Yes, that is a gross oversimplification but I am not an MD or a PhD. The point is this: they were able to measure and show a biological change in the body that correlated with what patients were reporting. As a patient interested in the preservation of quality of life in every cancer patient, along the entire disease trajectory, I was impressed by the comparison of what was being reported, the "real-world evidence" alongside biologically measurable observations.

Yet, I'm left with many questions. Why is there such a push-back from so many? Is it a lack of understanding, or the unwillingness to be open-minded about what this group of researchers is trying to accomplish. To disrupt the status quo with "unproven" and non-pharmacological approaches is, by many, referred to a quackery. I saw nothing that resembled quackery. I saw researchers sharing observations and I also saw some of the studies raised further questions worth exploring.

In one yoga study of particular interest to me given my issues with chemobrain, the findings seemed to indicate restorative yoga was a better option than yoga that included more movement. Again, during the presentation, the researcher very clearly outlined that the patients in this study were mostly sedintary breast cancer patients so the findings only applied to this particular subset of patients. AND, they observed that the quality of sleep in the group assigned to restorative yoga was significantly better leading to the statement that the slightly improved cognitive assessments in this group could be resulting from better sleep, not necessarily from the yoga practice, ending with, "more research must be done to answer the question."

In fact, the only thing that was suggested as a possible alternative to existing treatment was a session on pain management and reducing the use of opiods. Given the crisis with opiods, any alternative treatment that might prove effective, in my way of thinking, is a winning combination for a large number of people and addresses what has become a health crisis.

As I was writing this, I saw that ASCO released the results of their second annual National Cancer Opinion Survey and it's very disheartening. According to the press release, nearly 4 in ten Americans believe cancer can be "cured" solely using alternative therapies like enzymes and oxygen therapy, or with diet, exercise, vitamins and minerals. I haven't had the chance to read the entire report but I will. I'm not a fan of press releases. I'd rather read the methods and conclusions as written by those analyzing the findings. The publication is available for anyone to access.

The cure is not in a closet. There are plenty of nefarious characters out there, preying on people at what is likely the most vulnerable time in their lives, promising a cure using some outlandish treatment. Just. Don't. As for the so-called success stories touted by that cast of characters? The biology of cancer is complex and miracle cures, in my mind, could easily be explained as disease that was not aggressive or likely would never have killed the person to begin with. That's my position and that will remain my position, unless and until I am pointed to rigorous trials showing these "miraculous" outcomes in large cohorts of patients.

Bottom line: complementary care is not the same as alternative medicine. The acronym CAM (Complimentary and Alternative Medicine) is best replaced with CIM. Complementary Integrative Medicine seeks to help make conventional treatments more tolerable, enabling patients to finish full courses of therapy with the goal of helping us achieve the best possible outcomes using currently available, already proven to be effective conventional treatments. Alternative Medicine, for this patient and research advocate means unproven, and steer clear.

I just wish that those who so openly and unabashedly attack this entire area of medicine might begin to think a bit outside of the box and realize, patients matter. Management of side-effects matters. In this era patient-centered care, incorporating patient concerns and identifying as many ways as possible to address the concerns of patients is essential to achieve true and meaningful patient-centricity. It's not a buzzword. It's a call to action for both patients and providers, and it seems to me there is a large group of researchers answering that rallying cry. To those, I say thank you. To the detractors, I just make one respectful request. Don't lump everything into one bucket. Those who are researching complimentary care to help with quality of life fully and totally stand behind conventional treatments.

It's time for all of us to get on the same page.

If the words are troubling, attack the words ... not the methods or the outcomes or the questions being posed.

Note: I am closing the comments on this post because this seems to be a highly charged area and I'm not up for moderating the comments or getting into a debate. These are simply my observations. With utmost respect to all, please ... just take what resonates and leave the rest.

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Focusing Forward and Breaking Free of the Past

2018-09-30T13:07:00.001-04:00

Every year, or maybe it's almost every year, I share the same post on this day but the times they are a'changin ...

September 19, 2006.

That was the day my body was forever altered, the day of my bilateral mastectomy. And this year, I am thinking about the ways in which my life changed as a direct result of a cancer diagnosis, the decisions that would come in the weeks and months after that first suspicious finding on my routine annual mammography, and the time after active treatment when I began to pick up the pieces and found myself first here, pouring out my heart and soul before a computer screen.

In a million years, I could never have expected the twists and turns my life would take as a direct result of hearing what has been referred to as the scariest word, bar none, in most, if not every language on the entire planet. Cancer.

There was the waiting. The waiting for the next set of tests, the waiting for the results of those tests, the waiting to see the next clinician in line, the anticipation of what might be said, could be said and in most cases, the reality of what I was told, which was almost always a thing I had not even considered. There is a lesson in there. It is a lesson for those currently in that place and really, a lesson that transcends cancer or any disease, to most every circumstance that life throws us.

As I sit today, more than twelve years after my date with two surgeons and countless of other medical professionals, I am different. I have grown. I am the woman I was always meant to be and yet, my life is still not my own.

I will be in Chicago next week, eager to roll up my sleeves at the SWOG meeting and to see so many of the people who mean so much to me. I will make a side trip to see a few of the people at the Lurie Cancer Center, some of whom I now work with, too. At the end of October, I'll be in Arizona for the Society of Integrative Oncology meeting where I was asked to address a group of advocates about how they might become more involved in research activities.

It's a bit humbling and depending upon what's happening, it can be time consuming. My writing has taken a back seat to more collaborative projects where the patient voice is essential and I'm happy to lend mine when invited. By the same token, I'm conscious of self-care and I strive to do my best to strike a proper balance. Constantly assessing the circumstances before committing to anything is a good tool. It helps prevent things from tumbling down on me while also making sure no emotion blind-sides me because I was too entrenched in a project to feel whatever I might be feeling in any given moment. I think that may have been one of my biggest take-aways from ...

this ...

...in June, I had the absolute joy to attend a Commonweal retreat in Bolinas thanks in very large part to the generosity of a donor. That was a life changing event and that is something that Lori haunted me about for years. I can still hear her, "Just get on the waiting list, you NEED this." As usual, she was right. The week was a gift to my mind, to my body, to my soul, to my spirit. I arrived knowing no one and left with a dozen people I am connected to on such a deep level. It's a sacred space, an immersive experience on so many levels and when I find myself frustrated with any sort of nonsense or minutiae, I let my mind go back to Bolinas and I can feel myself surrounded by unconditional love and support. Yes, it was that powerful. Times a million.

On the heels of the retreat, I was home for just a few days before heading out to Durango, Colorado where wildfires were still raging but the hero firefighters saved every structure and managed to contain what seemed like it would be impossible. That allowed Blueprints of Hope to move forward with a survivorship event planned many months prior, where I was invited to share my experiences with chemobrain issues to a group of cancer patients.

In the midst of all of this, life is still happening. Much of it is wonderful. Weddings, new babies, showers to celebrate these life milestones ... each one fills my heart with joy. Some of it is a bit stressful - health issues surrounding loved ones, and a few of my own, too. I can't control any of that. All I can do is be the best helper for those who want my assistance, and deal with my own pesky health issues as they arise.

And then, there is this divorce. I hesitate to even use the word or mention anything relating to that. I know my words are parsed, pulled out of context, and I suppose might be used to turn a simple statement into something that was never intended. My words are, quite frankly, just as they appear. There is no hidden meaning or the need for anyone to attempt that proverbial reading between the lines nonsense. Sooner or later, that chapter will close and there will be no more lawyers, no more court appearances, no more anything and that part of my life will be fully and completely erased.

Emotionally, I am whole again. The reality is in the knowledge that I became whole and true to myself the moment I decided to exit what I now know was an unhealthy relationship that went on for decades. I made misguided choices along the way, but I don't look back with regret at any of them.

If I'm guilty of anything, it is being being true to those I makes promises to, even as I turned a blind eye to the obvious. My actions were borne of authenticity and genuine concern because that's who I am - and when I commit myself to someone or something, I'm all in. Until I'm not. And when that "I'm not" lightbulb illuminates, I learned a bit about myself. I can detach myself without anger or bitterness or any other self-defeating feelings. Just detach, devoid of emotion, moving pragmatically toward resolution.

Being exposed to so many different people from all over the country, I've learned the difference between being valued for who I am and what I bring to any table vs. being used by another. With eyes wide open, I can safely and perhaps a bit defiantly say "NEVER AGAIN."

Life is good. I am grateful for every moment whether I'm doing something in the realm of advocacy, practicing yoga (thank you Apple for adding it as a workout in the update on my watch!), celebrating those life milestones with loved ones, meeting friends, or simply relaxing in my home and the beautiful space right outside my door. The power of healing and the ability to ground me in every sense of the word that I get from the ocean which is always within my sight will never cease to amaze me. Recently, I was asked if I've come to take the vast and magnificent ocean views for granted. And without hestitating for a single second I stated that it's been nearly two years and I still gaze upon the glistening sea every single day with wide-eyed wonderment, and a ton of gratitude that this is my home and that is my backyard.

Yes, I finally learned to leave what my buddy Jack always referred to as that "big bag of shit you're carrying with you" in a box unless and until it requires my attention. Surrounded by ladybugs and dragonflies, feathers and butterflies, and random Neil Young songs popping on the radio, my spirit is sustained every single day by those no longer walking this earth. And then, there is an army of people, some quite close to home, others clear across the country, and yes, even a few sprinkled around the globe, encouraging me to continue walking this path, reminding me that I still have much to accomplish.

So, with a nod to Lady Gaga and Bradley Cooper as I eagerly await the release of the fourth remake of A Star is Born, I suppose I too, am far from the shallow now.

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CLINICAL TRIALS: Should you, Could you, Will you?

2018-06-01T11:13:00.000-04:00

May. National Cancer Research Month and having somehow morphed into a research geek, deeply passionate about the need to educate, to share what I've learned, and hopefully to dispel some of the things I hear, let's dig in.

First, a disclosure: This piece, presuming it is coherent and cohesive when complete, will be submitted to Clara Health's Patients Have Power Writing Contest. Yes, there will be prizes awarded and no, I don't expect to be the recipient of one of them.

However, I am *All In* with any initiative by any organization designed to shine a light on the need to help all of us understand that breakthroughs in medicine only happen through research, and research means conducting clinical trials. Above all else, clinical trials don't happen unless patients are stepping up to participate in trials for which they may be eligible.

Did you know, depending upon where you look for the information, a mere 3-5% of cancer patients participate in clinical trials? Let's look at the flip side. More than 90% of us may be walking around with answers locked inside our bodies which begs the question: "WHY?"

The truth is, there's no one simple answer. It's complicated. There is room for much improvement in every aspect of the process. A quick search on clinicaltrials.gov shows there are currently almost sixteen thousand trials across all diseases being studied that are currently recruiting, or are nearly ready to begin to recruit patients.

There's the first problem. How can any one doctor or office be expected to be fully versed on what trials might be appropriate for a particular patient? Then, if the trial is being conducted in a place that is outside of the doctor's office or institution, and presuming they are aware the trial is ongoing, would they suggest it as an option at the risk of having their patient seek treatment elsewhere? I have no answers but this is one place where an engaged patient, or a loved one acting on their behalf, might have impact.

Trolling through trials, however, is something most of us are not equipped to handle without assistance. It was years after my active treatment was over before I even learned that clinicaltrials.gov existed. The site was recently overhauled and it is now easier to fine tune the results but it's still an overwhelming process. With a host of other clinical trial matching services in play, there are other ways to search, but the space is still evolving making that a post for another day. The quickest answer I have for this, Just ASK. Don't wait for a red carpet rollout or a hand-engraved invitation, ask your medical provider if s/he knows of any ongoing trials, or if they don't personally know of any, ask how you might investigate on your own.

Having just made a suggestion, let's first acknowledge one thing: Disease Shock - as this leads directly to the next problem. When the word "cancer" is spoken, and you happen to be the person in whose body cancer has taken up residence, most of us become mentally crippled for a period of time as we attempt to navigate an emotional minefield that nothing can prepare us for. Speaking personally, when I showed up for my post-biopsy appointment in July of 2006, I knew. The night before the appointment, I just knew I was getting bad news the next morning. Knowing, and then hearing those words - anticipated fears now a reality, all I can say is that is akin to entering some sort of alternate universe.

I was armed with a list of questions. I asked none. I recall the doctor gently and kindly asking me with a bit of surprise if there was anything I wanted to ask her. Thankfully, my mom was beside me and she asked the most important questions about the immediate next steps. Not once did anyone in that room mention clinical trial participation as a treatment option. Even weeks later, at my first appointment with my oncologist when I learned I would need chemotherapy, I was still reeling and again, it was my mom and my very dear friend seated with me - taking notes and asking questions. Aside from asking if he was planning to test my tumor to help inform chemotherapy decisions using what was then newly available (Onco-Dx for the curious among you **), I was still in the cancer-mute phase. And again, participation in any sort of trial was never mentioned.

Fast forward, five years post-treatment: Early research findings were being presented at the annual San Antonio Breast Cancer Symposium. Watching from afar thanks to a lively twitter feed, I learned there was a trial for which I would have been eligible and one in which I know I would have participated. When I was finished with chemotherapy and the last big surgical procedure to have my temporary implants exchanged for the long lasting version was quickly approaching, I had a lengthy discussion with my oncologist regarding the need for medication for the next five to ten years. We discussed the risks and the benefits of each of the different drugs. My choice was a drug that is known to cause bone loss thus increasing the possibility of bone fracture. I clearly recall stating that I'd deal with a broken bone to reduce the risk of a cancer recurrence. The latter was terrifying. The former, in my mind, was just a plaster cast.

He never told me there was an open trial, currently recruiting patients just like me. The site of this particular trial was at a neighboring institution, just miles away from the hospital where I was being treated. The trial was designed to see if the addition of a second drug, already widely in use, would help mitigate problems associated with bone loss frequently seen in patients on certain post-chemotherapy medications including the drug we had decided was the best option for my circumstances. In the course of the study which I only learned of years later and did not participate in, there was an unexpected and far more important benefit observed by the research team. While the primary aim of the study was to assess whether this helped prevent bone loss and then, seeing how this may (or may not) have helped minimize fractures, they saw a reduction in the spread of cancer to the bones in the patients who began receiving this "add-on" treatment. It was an unanticipated finding and one that was a pretty big deal. Because of that observation, new studies have since been developed and are ongoing to validate those observations.

And what happened to me? Well, I had to fight to have this medication administered. Medically and technically, it is to address my ongoing bone deterioration. It is approved for use in osteopenia which, for the record, I was diagnosed with before I learned of my cancer. Had I been asked if I wanted to learn more about a possible study, I know I would have said yes. If I were more savvy, I would have been searching for possible trials, even though my cancer was found early.

I never asked, and no one on my treatment team ever uttered the words "clinical trial." Back then, I don't even know what I grasped of the research landscape. I'm sure, like so many still believe, enrolling in a clinical trial is the proverbial Hail Mary pass: Participating in research is only for those who've run out of all approved treatment options. Not.True. (Mostly Not.True.) Ditto that all too familiar phrase uttered by many, "I don't want to be a guinea pig!" or "What if I get stuck on the 'sugar pill'?" both of which are typical and understandable statements. Until we understand.

The single most important piece of the clinical trial process? Informed consent or, in a far more patient-focused world, I prefer to call this educated consent. That language makes it crystal clear that true understanding is at the very heart of any, every and all decisions along the entire process that may lead us to choose to participate in a clinical trial. What are the risks of participating? What exactly are you planning to do to my body? Who's paying for it? How much time will this require above my normal visit schedule? Center Watch takes an in-depth look and provides a plain language explanation of clinical trials and the different phases, informed consent and contains a wealth of additional information. It's worth the trip.

Technically, we are adding to a body of knowledge so in a sense, personally, I have no problem referring to myself as a lab rat. We may derive a benefit, we may not. Here's the thing and it's something that is a critical piece of this entire landscape. When there is a treatment that is known to be the best (or, in plenty of cases when there are a number of approved options) for any given disease, it cannot and will not be withheld. There are so many rules and regulations in place to protect the safety of everyone who chooses a clinical trial as a treatment option.

So, are you really a guinea pig? Not so much. The research and clinical community is generally studying things like adding a new drug to combine with the drug that you are likely already taking. Or, they may be studying things like increasing the dose. In both of these cases, they are trying to determine if a different dose or the addition of a new drug works better than what you are currently on. Said another way, they are *not* taking away what works - that would be unethical and it's simply not done. Even in those for whom there is no available treatment option, still, they aren't taking away anything. Sadly, there are too many subsets of patients who've run out of all treatments or who never had any available treatments to begin with. They are seeing if they can make the drug work better (or at all), or attempting to reduce side effects, to extend life, to preserve or improve quality of life. Admittedly, that's a gross oversimplification but that's the broad overview.

If some people are going to be on the real drug and others are going to be on a placebo (aka, the dreaded "sugar pill"), should you really care? Well, if that's what's stopping you here's a thought. If you participate you have a 50/50 shot of real drug vs. placebo. If you don't participate you have a zero shot of getting anything new or novel or in the best possible case, a breakthrough. And while I can't state with certainty how frequently this happens, if the research team sees a group of patients on the trial with what appears to be exceptional responses, the trial will be "unblinded" and everyone will be offered the real deal. What else happens? The rest of us, those not on the trial at all, now have to wait, likely years, for the findings to be presented, for the FDA to approve the drug while those of us who didn't want to be the guinea pig or risk being assigned to the placebo get to sit on the sidelines, spectators to what could be the next big thing.

As researchers and clinicians are now well beyond simply utilizing different treatment options and are looking at the characteristics of so many diseases and the interaction with other things happening in our bodies to understand things well beyond my pay grade, I'm hopeful we are at a true inflection point.

Precision medicine is not merely a buzzword. It holds the promise of allowing our clinicians to administer the best available medication in the most effective and tolerated dose, to the right patient, at the right time with the hope of delivering care that will afford the best outcome for each patient. Fulfilling the promise of precision medicine starts with the most basic science. It starts with tissue or fluid donation and continues along the entire trajectory to using new compounds or combinations of drugs, or reducing/increasing dosages, or even changing the dosing intervals. All of this requires rigorous testing before changes are made.

Researchers have ideas. They fight for funding. They develop trials along the entire trajectory - from "first in human" small studies to large post-approval observational studies to determine what is experienced outside of the controlled conditions in the lab to make real-world observations. None of their work can succeed without our clinical partners speaking with us about all of the available options. We must be willing to listen and carefully weigh every option. A substantial percentage of clinical trials are closed each year. They must meet accrual goals within a specified time frame. Closing a trial after successfully obtaining funding, getting the necessary pre-trial approvals in place and then expending funds to set up the lab is a lost opportunity to learn something. The loss of the money used to put everything in place troubles me - the money is gone forever and unless someone finds a way to begin growing a magic money tree, those were precious research dollars. Wasted. And tragic. While I can't provide an amount, I do know it's substantial. Add up the losses and then subtract from the already strapped funding circumstances and we have one of those dreaded "situations," that I do think can be resolved.

I submit that a rigorous examination of trials that were forced to close because of accrual/retention failure as a means to understanding what happened, in its entirety, with the hope of identifying the barriers and finding possible ways to address the problems. Was the eligibility to participate too narrow and if so, could it have been broadened? Perhaps the question being addressed wasn't one that was important to the target group of potential study participants? Maybe the requests being made of the participants were simply too burdensome? Or was it as I mentioned before: the failure to accrue (and/or keep people on the study) was the result of a communication gap; somehow the trial was lost in transition between the lab to the clinic, the clinical to potential, eligible patients. Scientist are the idea experts, determining which questions they believe must be answered to achieve better outcomes for patients. Regulators make sure every "i" is dotted, "t" is crossed. Aligning the goals and expectations of all by including patients in every part of the process may be one way to help mitigate this problem. While I'm on this soapbox, addressing concerns unique to all underrepresented ethnic and minority groups in culturally appropriate ways, might afford more diverse participation, with findings that prove to be much more robust and more accurately reflect nuances across all patient populations.

Clinical trials aren't for everyone but I have to believe, at least in the cancer space, the percentage is far higher than what we are seeing. I do think many more than 5% are willing to step up. While trials are designed with little wiggle room for switching things up, it is important for everyone to remember, simply because you decided to step up for a trial, you can change your mind. You control you and at any point, you are free to voluntarily withdraw from any trial and continue treatment using already approved drugs.

The bonus add on? You will be monitored closely. In fact, the likelihood is that you will be monitored far more closely than you would be if you are not part of a trial. The trial team may determine you must come off the trial if they observe things that are detrimental to you. In a perfect world, the criteria for eligibility should be expanded whenever possible-and that is an area in which I am currently lending my voice for the benefit of the widest possible group of patients. Without getting all science-y, adaptive clinical trials are being used to do just as its name suggests - adapt the trial to the what is being observed in patients by the research team. The I-SPY trials are a great example of this.

We're all in the same ballpark but each of us is standing on a different base. The clinicians are on their base, the researchers on another base, and we, the patients, are on yet another. It's time for everyone to bridge those bases, to begin communicating in ways each may hear and understand so we can hit this out of the park: For ourselves, for the possible benefit of at-risk family members, and for the greater good of all.

(Post script: to the cynics, the skeptics, those who continually insist "the cure is in the closet," you could be right and this may be true. The problem? Until we open the closet door and study what's inside, it will remain in that dark closet with the door firmly shut.)

**As if by magic, recent findings from a landmark trial using Onco-Dx to inform chemotherapy decisions were just presented at the annual ASCO meeting in Chicago. The findings from the TAILORx trial have been splashed all over the media and this is a big deal. The findings will spare many from overtreatment but the key take away for the purpose of this post: a big thank you to the 10K+ women who stepped up to help answer a big question for the rest of us!

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Musings: On Life, Acceptance, Research and Being Enough

2018-05-04T12:45:00.000-04:00

"Life is what happens while you're busy making other plans."

The thing is, I've not had a single moment over these past couple of years where I've had the luxury of making any plans. It seems my life is being planned by others ... by the poor judgement and yes, at times vindictiveness of some, forcing me to live in a place of reacting, responding; by the needs of loved ones that require my attention and/or involvement, something that I do without a scintilla of hesitation and with my whole heart because it's who I am and I know if the tables were turned, I would be falling into their arms for help and those same people would be by my side with no questions asked; by events well beyond anyone's control, deaths both sudden and unexpected of some, and of those who were stolen from this life as I watched as disease ravaged their bodies until they drew their last breath. I'm just scratching the surface in these observations.

If 2017 was one of the most difficult years I've ever experienced, now that one-third of 2018 is in the rear view mirror, I realize I'm still not in plan making mode. I'm getting there but I've learned many wonderful lessons in all of this. I live in the moment and for the moment.

I moved into my new home a year ago. It's furnished with everything I need but until my financial situation is resolved, my hands are tied and decorating isn't in the cards. There are things I want to do in here, but they will wait. I will wait. And, I'm ok with that. I have the ocean, unobstructed from view, and I delight in glancing up from every room into which I walk to see the waves crashing on some days or barely lapping the shore on others. I realize the many moods of the ocean is a metaphor for my life. Calm and still, foggy and barely visible, choppy and uneven, or furiously pounding the shoreline, I know that whatever is happening on any given day, it is just for a short period of time. As my dad would so frequently say, "Life turns on a dime," and the ocean is a good reminder of exactly that.

I've experienced the joy of watching schools of dolphins dancing their way through the waves. The whales put on quite a show for an entire month just before the arrival of winter, which for the records, was brutal. They are back again for their last cruise off the southern most shores of Long Island before heading out to the deep waters east of here. Yesterday, in a most unexpected surprise as I was sitting on the terrace, one of them playfully jumped out of the water. Signs were up about a "resting seal" cautioning the need to stay within 150 feet. One morning when I was having my coffee, the seal who was being tracked by marine wildlife, was resting on the sand right in front of my terrace. It was a treat to watch as he occasionally lifted his head to see what was going on before settling back in to rest a bit more. It was even more of a treat to watch how gingerly the wildlife team coaxed him back into the water, after three plus hours. I take none of these moments for granted. I never know what I might experience on any given day: the great, the not so great, and the downright ugly.

So I just be. Expect nothing. Anticipate less. Settle into that space of acceptance. Fully embracing, quite simply: I am enough. Everything I have is enough. By refusing to allow the toxicity of others to steal that from me, difficult though it can be in some moments, by living in this place of authenticity and truth they are no longer just words, but the mantra by which I am choosing to live the life that I have carved for myself.

Yes, I am committed in so many ways to many projects that I find myself immersed in. They sustain me and fulfill me in ways that I can't even begin to describe. April, in its entirety, was consumed with conferences and meetings, preceded by pre-meeting planning, followed by post-meeting next step planning. Simultaneously exhausting and exhilarating, the wonder of reconnecting with people I've missed for many months, beyond social online channels, finally able to sit together at dinner tables, in meeting rooms, or on barstools rejuvenated my soul and every fiber of my being.

The SWOG meeting and the AACR Annual Meeting, in some ways, were difficult. Reminders of last year were everywhere I turned and more than once, I swallowed back a bucketload of tears. Surrounded by people who mean so much to me kept me distracted for nearly two weeks. Distracted from the reality of Lori's death and Jack's death - and the deaths of too many others - but they were my "go-to" people as I navigate unchartered and unfamiliar waters without their words of wisdom, encouragement, or at times, colorful indignation at the ongoing attempts being made to undermine me, to assassinate my character.

I can recall at least two days upon arriving home where I crashed. Hard. Snippets of memories from last year replayed in my head. Two days, I awoke with zero energy. After walking in circles for a short period of time after a restful night's sleep, I let it wash over me and beyond showering and brushing my teeth, those days were spent doing absolutely nothing. I had nothing to give, not to anyone or anything, so instead, I chose self-care. Thinking: Tomorrow, I'll feel better and today, I don't, and I am enough, I gave myself completely guiltless permission to feel those feelings, to be gentle with myself.

Cancer is traumatizing. I heard someone say in a recent discussion at one of the meetings, the word, in every language, is one that evokes the highest level of terror and fear. While supported by so many loved ones, the person who should have been by my side, the person who vowed to stand by my side in "sickness and in health" was only speaking words in that moment. When it came time to take action, those actions were to berate, to belittle, to betray telling far too many people, "Cancer changed her, she's not the same." Knowing today that some of these people were merely casual acquaintances, more than a few with whom he was intimate while still married and when I was on chemotherapy and having a host of surgeries performed, was a severe blow, one that struck me in the deepest core of my being.

Piece by piece I've managed to pick myself up. I'm still learning to deal with all of the collective trauma that I now understand is what is referred to as complex Post Traumatic Stress. Apparently, everything I have been doing is rooted in the concept of the opportunity for Post-Traumatic Growth. I'm still refining my path in this advocacy space and there are many exciting things happening. It seems in this moment, much of it is behind the scenes.

So many areas speak to me. We need to forge more meaningful partnerships between patients and scientists/medical providers. I am fortunate to have connected with many who realize the value of these partnerships. We need to address needs across the entire cancer continuum, from the moment of diagnosis and for the rest of our lives. Just because active treatment may be completed, there is fallout-both physical and emotional. I need not look beyond one simple step of separation, to my own mom, to attempt to understand the minefield that is life with metastatic disease. We must do better for all.

In this moment, I choose to acknowledge with such deep gratitude, two things. First, a big thank you to Healthline for acknowledging my writing efforts for the seventh consecutive year by including this blog on their list of Breast Cancer Blogs. Most importantly, I am ever so grateful to organizations like the NCI, SWOG, and the AACR for their steadfast leadership in advancing our knowledge in the area of cancer research to benefit patients and for allowing me to play a small role in their efforts. They, along with so many other individual researchers and a host of additional organizations work tirelessly to help in efforts to one day prevent at least some cancer types from ever occurring, to establish better treatment protocols for those of us diagnosed with cancer, to save the lives of those living with advanced and life-threatening cancer, and to improve the lives of every person living through and well-beyond cancer treatment.

For the record, May is National Cancer Research Month. While I am Awareness Weary, research does save lives and this is one initiative that is highly important. All of Us can play a role in whatever way speaks to us-even if that role is simply sitting beside someone offering silent and unwavering support for whatever they are experiencing in that moment.

While I had no idea where I was going when I sat down to write, and no idea how to end this particular post, I'll just offer words of encouragement to everyone. No matter what your space or place, Focus Forward. We can't undo the past, life offers no opportunity to redo things for which we may have regrets. But, life does allow us to learn and build upon our experiences and blaze our own trails.

I Am Enough. And So Are YOU.

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It's Just a Pain in the Neck, With a Side of PTS Terror

2018-01-25T10:00:00.000-05:00

Once betrayed by our bodies like many of us feel after being diagnosed with cancer, every new ache can bring with it a level of fear. Some of us are better at dealing with that fear than others. I'm not in the better category.

Last April, I moved into my new home, my ocean oasis. That was the fourth move I'd made in 16 months. I guess I never learned those lessons about using one's legs to lift heavy things. Coupled with the fact that I'm on the petite side, measuring in at a mere 5 feet 2 inches, I really have no business doing heavy-lifting. Or dragging. Or pulling, pushing, shoving, forcing or whatever else constitutes physical heavy-lifting. Maybe I thought, because I am pretty decent at that emotional heavy-lifting, it somehow translated to the physical stuff, too.

Dumb move. Rookie mistake. Should have known better.

By early May, I was in serious pain. I couldn't pinpoint the pain. It was my clavicle, my back, my upper arm and it radiated right through my fingertips. It was severe. Like daggers shooting down my arm, I was convinced the breast cancer had taken up residence in my bone(s).

Turning like the pro that I am to every internet avenue, I began researching the possibility that lobular breast cancer might like spreading to the upper arm. None of this thinking was logical on any level, but it's what happens. It's what I do. Sadly, I think it's what many of us do.

The pain woke me at night. And if the pain didn't wake me, the moans would wake me instead. Sometimes, middle of the night moans and groans can be fun to wake to. A wild and vivid dream that I might try to coax into reality -- those are fun. What I was experiencing? Not one time was there a fabulous dream involved in any of this. It was just pain. And fear. Or more accurately, it was sheer, horrifying terror. Followed always by sleepless hours as my mind went down that path, you know, the it's back path, while my body was writhing in pain.

Only a handful of people knew what was going on and only one knew that the pain was excruciating. The suggestion that I must have this checked was met with two-word responses. "No way," "Not happening," or on those days when the pain got the best of me, it was a quick and loud, "Fuck That." I rationalized it. "Early detection of metastatic breast cancer has not been shown to change overall survival," I would proclaim, not even certain if this is still a clinically accurate statement. When I shared that thought with my one person, elaborating further that I'd prefer to have a bit more time of blissful ignorance rather than cross the line into metastatic disease, her two-word response was a surprise. "Fair enough."

I lived with the pain. I wasted my two emergency Percocet one night when the pain was unbearable. I finally convinced myself the heavy arm and what appeared to be a swollen right hand was lymphedema. I thought about calling the oncologist, but realized it was late on a Friday in advance of Memorial Day weekend. Instead, I called my mom who happened to have a monthly appointment with our oncologist. I let her hijack her own appointment on my behalf and within an hour, I was at in the office being evaluated. "Not lymphedema, not cording, probably a pinched nerve, here's the doctor you should see."

Once convinced it was not cancer that had spread to my bones, I made the appointment to see an orthopedic specialist. He had x-rays done while I was there, prescribed a medication that didn't work at all, and gave me the name of a physician in the office with whom I should follow up for pain management. Weeks later, awash in the calmness that my problem was not a cancerous spread, I was with the pain doctor. He manipulated my neck in every direction, prescribed a different medication, and discussed the need for an MRI.

And there it was. His voice began to sound like we were underwater. He was explaining that he doesn't give MRI results over the phone and absent a phone call, I should make no presumptions about the results of the MRI. I heard the word cancer and those dreaded words, "with your history..." and my brain was off to the races. I like this guy lots and in fairness, I'm sure he said he didn't think it was cancer but just hearing the word, for me, is like putting a war veteran back on a battlefield with the sound of explosives all around. I thanked him for letting me know he wouldn't be calling with results, recounting the number of people I've spoken with over the years who learned they had cancer via a phone call, including some who were behind the wheel of a car lucky they didn't cause a cataclysmic accident.

Already having stepped into the maze, I had to see this testing through. The insurance company approved the MRI immediately and I scheduled it, immediately. I needed answers and I needed them quickly. I had upped the ante by convincing myself it was "just lymphedema" as if that would be a walk in the park which, for the record, it isn't. Lymphedema can be, and often is quite debilitating.

I tried taking the gabapentin prescribed by the pain doctor but it was making me too groggy. I took precisely two pills. One in the afternoon, one in the evening and when I woke the following morning requiring four hours to get going, I tossed the bottle into a cabinet. The MRI was awful and it had nothing to do with being confined inside that tube. I kept my eyes closed despite my temptation to open them just once. Just once is all it takes for the claustrophobia to set in, but on this day, it was the pain. Lying still, flat on my back without any support for my neck caused the pain to be as severe as I'd ever experienced.

I dutifully returned for my follow-up. Little did the doctor know his plan of not giving results over the phone would be undermined by a patient portal. Score one for electronic medical records and automated processes. I saw the results days before my appointment. No Cancer! Armed with a report filled with all sorts of unfamiliar terminology, I was once again, trolling the internet for information, googling every word in the report. When I met with the doctor, his words were calming but he explained, quite emphatically, "Doing nothing isn't an option." He then asked about the gabapentin and I somewhat colorfully explained that I can't walk around like I'm stupid. He advised me to build up slowly with the pills and suggested a nerve block injection would be the best course of action. When he told me he did these injections without a sedative, I knew it was time to find a new doctor.

Stupid move.

I began taking the gabapentin and gradually built up to 5-6 capsules daily. Simultaneously, I began searching for a doctor who would just knock me out for this nerve block. The thought of someone sticking a needle in my neck? Not in a million years. For two months, I've been taking the gabapentin and today, I want to kick myself for letting this go on.

Last week, I went back to my guy. He did the nerve block. I was wide awake. I felt nothing. When I learned that I have to take every precaution to carefully and slowly taper off the gabapentin, I felt a whole lot. Aside from never, when did I blindly take any medication without doing my homework about possible side effects and the like? I've been off all prescribed medication for more than 8 months except for vitamin supplements and an anti-anxiety medication that I sometimes use if I have trouble sleeping. For ten years, I lived with a pill case. Cutting that cord was a cancer rite of passage.

And here I am, again. The weaning process, despite being on the medication for two short months, is going to be quite meticulous and quite lengthy. Tethered again to a pill bottle over my fear of an injection I didn't even feel?

Lesson learned. What lesson that was, I'm not really sure.

Must I learn to face fear squarely in the face? And if so, which fear - a cancer recurrence that pushed me to let this linger so long, or the terror of having a needle in my neck?

Or, reading before starting any new medication because some things are too dangerous to just stop taking?

Or, maybe it's acceptance that I'm not as young as my mind keeps telling me and its ok to ask for help rather than pretending “I got this,” in every single aspect of my life?

In the near term, the certain lesson is this process is going to be slow and steady. While slow and steady may win the race in fables and fairy tales, it's not really my style. For sure, the lesson upon which I would wager a substantial sum of money? Those aforementioned anti-anxiety meds? Until this chapter is wrapped up, they're not just for sleep disturbances anymore!

Note: I wrote this two months ago. I'm now fully weaned off the gabapentin and it knocked me on my ass for 48 hours each and every time I dropped one pill from my daily dose. I just had my follow up with the pain management doctor. I told him I still experience occasional numbness or tingling in the fingertips on my right hand. He told me I should be taking a low dose of gabapentin which was met with an icy stare and a quick, flip response, "Not happening, those pills are a bitch to stop." He told me he knew that which may have triggered another even icier glare in his direction followed by my question about other options. Apparently, we may be able to try another nerve block if the pain begins traveling down my shoulders, up my fingers and meeting somewhere around my elbow. However, it seems the optimal approach is the nerve block in conjunction with the gabapentin. Since that's not an option in my play book, it appears if this flares up again, I'm left with two lousy choices. Live with the pain or there will be yet another surgery in my future. As I can still feel that pain in my memory, I hope this remains in check or I'll be gowned up yet again, this time, having some form of surgery to figure out how to fix the three discs in my neck ... And so it goes ...

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Help us build @CancerBase - MBC patients - We need YOU!

2018-01-22T11:31:00.000-05:00

I just put the information below on Facebook. CancerBase, by patients and for patients, wants to make sure it is built using the real world needs OF PATIENTS.

To best achieve this, the initial focus will be on the metastatic breast cancer community. We would like to speak directly with a small number patients. The purpose is not to identify specific information about anyone's individual disease. We are assessing needs. The calls will be private (in other words, it's not a group of patients - they will be one on one).

My interest in this project is deeply embedded in my heart and soul. You see, when this project was first launched at the initial Cancer Moonshot, six of us were "ready to light up the world." The team has since grown, exponentially.

Of those original six, four of us were patients.

I do this in memory of Sonja Durham (May), Lori Marx-Rubiner (August), and Jack Whelan (November). They were all stolen from us in a span of six months in 2017. I wish to carry their legacy forward and I hope you will consider sharing this with those who may be willing and able to help in this information gathering process.

With a grateful heart,

AnneMarie

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A New Year, A New Perspective

2018-01-07T15:13:00.000-05:00

The next chapter begins. Or perhaps, it's the next book. Already, just 7 days into this year, I am surrounded by symbolism and I'm acutely aware of each of these things.

I spent New Year's Eve with a dear friend. We raised a glass at midnight, just the two of us, watching from the warmth of her home, as those in Times Square braved what I believe I heard was the second coldest ever. At 6:45AM, I was rushing into the car, the temperature a ridiculously frigid six degrees.

Six degrees of separation from the warm house to the warm car. And likely, six degrees or less of separation among those I already know and those I've yet to meet. Symbolic.

I arrived in Arizona mid-afternoon to begin my ESCAPE at Miraval. I highly recommend anyone in the advocacy space consider applying to this conference and I will write a proper post talking about what makes this conference so special when I can collect all of my thoughts.

Back in my Uber, as we approached Tucson from Phoenix, things began to look familiar. I realized we were on a road less traveled and it took us past a place where the entrance has a sign announcing "Miracles Happen Here" and I know, the other side of that sign says, "You Are a Miracle."

I know this because it was January 2, 2011 that I first walked through that facility. Here I was passing that sign on January 1, 2018. I grabbed my phone to double check the dates and then quickly used my fingers to count. If life indeed happens in cycles, that day was the end of a seven-year cycle. Symbolic.

Fittingly, my son's birthday was yesterday, and his age this year is a multiple of seven so he too is beginning the next seven-year cycle in his life. And he will be married later this year. An exciting time for him, for his beautiful bride to be who is one of the kindest and most considerate people I've ever met, and exciting for me.

Funny in a way, was realizing that the night of January 1, 2018 would be the night of a full, bright and beautiful supermoon. I saw it as I was walking back to my room after dinner and it was right in front of me the following morning, still high in the sky at 7AM.

Later that morning, I scheduled a Quantum Leap. I did this in 2015 at the same conference. I shared my experience in a series of photos in a blogpost. It was in a group session. This time, I did a private "leap" because it felt like the right way to conclude the year of turning inward. I would boldly step outward. There are only a couple of photos because the same young man who was holding the rope to lower me safely to the ground, had to leave the rope to take some pictures. It took me quite a bit of time to steady my legs before I could put my arms at my side.

When I stepped off the pole, unlike last time, there was no fear. And as Caleb, my guide shared, it's not really a leap, I was just going to take one step forward. In 2015, I did leap, somewhat frenzied and definitely terrified. I know I closed my eyes. This time, I looked right at Caleb and calmly stated that I was ready to step forward. I took a deep breath and a simple step toward the ground 35 feet below. He lowered me slowly and I savored every gentle sway until my feet touched the ground. This time, it was controlled and without any feeling of chaos. Symbolic.

I proved that I AM ready to face what is in front of me this time, rather than simply move forward because going backward is not an option. My lessons in Quantum Leaps One and Two were incremental, and they unfolded in the time frame that I am able to handle. And that's the lesson. I was somewhat unsteady in getting to the top this time, and I recall pausing on those top pegs. I realized my legs may not be strong enough to make that last step to the top. I also recall thinking, "If this is as far as I can get, then that's all I have to give today, and that is okay. I will still be fine and I will get back down safely with Caleb's hands guiding the rope." It was in that moment of acceptance, that moment of this is all I have right now and understanding that whatever I have in any given moment is ENOUGH, that I surrendered completely. It was, for me, the ability to surrender without thinking or harsh self-judgment that I found myself stepping up boldly and fearlessly.

Very symbolic.

After we were together on the ground, we spoke about the activity and tears came to my eyes as he mentioned something about the Catskills. I met Keith in a bungalow colony in the Catskill Mountains and I felt his presence. Caleb was referring to Mike Tyson, and wanted to share a quote I'd never heard. "Everyone has a plan until they get punched in the face." I look back at 2017 as a year where I'd been the recipient of more than I'd like to count sucker punches. I suppose learning the roll with those punches, as that saying goes, is yet another moment. Symbolic.

I was reminded of the sharp contrast from my home with its sweeping views of the ocean and the moist air to the peaceful backdrop of the Catalina mountains and the dry desert air when my sinuses decided to let me know they needed some hydration. I ignored this until my nose decided to shout a wake-up call at me. I was not sick, I felt fine, but an annoying running nose? A reminder to pay attention to what my body needs in any given moment: Stay present and check in with myself. Symbolic.

Having dodged the blizzard in New York, barely paying attention to any of it until I contacted the person who always transports me to and from the airport told me to call him when I knew for sure I'd be on a flight. He wasn't too sure I'd be getting home. The airports in the northeast were all jammed up from the cancellations. Yet, I did get home on schedule, without a single delay and this was with an uncharacteristic itinerary requiring connecting flights and checked bags. Generally, I avoid both. Smooth sailing, or should I say flying. Hopefully, this will be symbolic of what lies ahead.

When I returned last night it was still as frigid as it was when I left on January 1. I picked up a total of one degree in temperature. It was seven when I exited the terminal at JFK. I don't recall when it's been this cold for this long. I despise the cold and I'm beginning to assess my desire to stay in NY but it is home.

I'm thinking that as I approach some upcoming unpleasantness, or downright ugliness which I expect to begin unfolding in just days, I will use this icy weather to remind me there are times I, too will have to replace my blood with ice. I will maintain steely iciness when dealing with those who wish to see me punched in the face. I will stand tall. No one will rattle my nerves and I will be on the sunny side of this.

I can't control the punches, but I can stop the bleeding.

I can't control the weather but I can turn toward the sun to feel its warmth and allow its light to guide me.

And, I can't think of a better place to have spent the first week of this new year. The group of people I was with at the conference, some close friends who so very dear to me, and now, new friends, too helped me open my eyes fully and helped me realize throwing in the towel isn't even an option I can entertain on any level.

And so I move, #AlwaysForward. With a reminder, a gift I purchased right before I left. A chain to wear around my neck. The message attached to the chain says everything I need to remember.

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Standing on Truth ... Fearlessly

2017-12-30T14:27:00.000-05:00

As we approach the end of 2017, all I can say is that this has been a horrific year for me. I believe there are many within this circle who are nodding in agreement.

My own struggles have extended well beyond the breast cancer arena.

Lori's death in August devastated me in ways I can't even describe but I suspect no description is necessary, or would even scratch the surface. I still grab my phone to send her texts and realize there is no phone to text.

Six weeks before Lori's death, someone else who was so very dear to me, a trusted friend and confidante who was guiding me through this messy divorce also died. That was a death from suicide. Notice my choice of words. I don't subscribe to the notion that suicide is a choice but rather, the result of an illness. Wrapping my brain around that, however, took time. Guilt over not reaching out more frequently, as if I might have changed something. I still haven't fully resolved that in my mind and in my heart.

And Jack. I don't know what to say about Jack that hasn't already been said already. By hundreds, or more likely, thousands of people. I remember our very last phone call. I knew it would be our last and it was bittersweet hearing his voice with the knowledge he likely placed the call to say goodbye. And I was right.

I thought 2017 was finished dumping awfulness on me ... until ...

One week ago, on Christmas night, I was contacted by the older brother of a childhood friend. He wanted to make sure I knew that my friend died very early on the morning of Christmas Eve. We were friends at 12 years old and reconnected a few years ago through the magic of social media. He was not sick. In fact, three days before, he called to see if we could meet somewhere for a cup of coffee. In the pre-holiday madness, I was out running errands and I chose the errands over the visit. After all, we had plans to see each other on January 12. We would be visiting his mom, a holocaust survivor who found her voice at 70 years old and began speaking before large groups of people, accompanying groups of students to Europe to bear witness to what remains of the concentration camps. Instead, I visited his mom two nights ago to make a shiva call.

My friend, Keith was constantly checking up on me. Another friend nailed it when she described him as one of the "most sympathetic and emotionally wise men." Keith's death crushed me. There's something about a friendship that stands the test of time, about the shared history and memories. It's not that it's better, just different. There was nothing romantic about our relationship and his mother said it best when I saw her. "He loved you like a sister." He kept me grounded, guided me through the darkness. He made me laugh, sometimes through tears. Just 2 weeks ago, when I found myself in a place darker than I've been in over a year, I sent him a text to say just that. Within a second, he was on the phone, and inside minutes, he helped me sort through the mess. Trying to wrap my brain around "never again" is proving to be very difficult. I alternate between laughing over some of the silliness we shared and crying, sobbing really, over the silliness that will no longer be.

Then, there was a hospitalization of a loved one which was a horrendous experience for each of us, and for many other family members. Much of September was consumed with making sure proper care was in place. I worry about my mom, although I'm happy to share that her scans are showing improvement with the addition of Ibrance. Her routine three month scans were pushed out to four months and the next scan will be 4-5 months. So I take the good news and relish in the joy.

We had a beautiful Christmas Eve and Christmas Day. I spent it with my kids, my extended family and ultimately wound the holiday down at the home of my dear friend. I was with her when I learned about Keith. Grateful I wasn't alone, grateful his brother waited to contact me, absolutely certain the decision to wait until 6PM was to make sure I was able to enjoy the holiday, blissfully ignorant of the reality. Emotionally wise. Sympathetic. Considerate. Deep joy, immediately plunged into gut-wrenching grief.

And of course, I mentioned months ago that I finally made a choice to file for divorce. That was one year ago. I am not one inch closer to having this marriage dissolved than I was at any point since the paperwork was filed. I have been deceived for more than a decade and the lies and the character assassination in ongoing. I know they are trying to break me, but I may stumble, I may have moments of sheer disgust at the games being played but I leave the worrying to the two attorneys I was forced to retain.

Break, I won't. Feelings for the person I thought I loved, but after a year of reflection, realize I don't think I ever loved? Emptiness. I feel nothing. Not anger, not sorrow, not even sympathy which is quite uncharacteristic of me as it is my nature to be empathetic to nearly everyone. I'm indifferent when it comes to him. I'm irritated, however, that this could linger for years as they continue with the lies in an attempt to thwart a fair settlement. More than that, I can't say and in a public space, perhaps even this little blurb is more than I should say. But that reel of bullshit has been the background noise in my life and it can get on my nerves.

I stand, and I will always stand on a foundation built on truth. I will speak my truth, yes fearlessly, and without hesitation in any and every situation. I can't live my life on the sidelines. There are those who choose to stand in silent support and I respect those who make that choice. That, however, is not who I am today. It is who I was for far too many years. There are times I might believe it's best to remain publicly silent because I can accomplish more behind the scenes. But, in those times I choose to speak my truth, it is not to hurt anyone. It is simply to shine a light into a space where the darkness might be misleading good people. For anyone who might have been hurt by my actions or inactions, I am truly and deeply sorry. The truth matters above all else and I will always support people first, particularly over those with the appearance of advancing an agenda, for themselves or for the benefit of an organization. Respectful, always. But bullshit, in all forms, is just that and given how mired I am in it in too many aspects of my life, when it's appropriate to Call Bullshit. I will make the call. Not in defiance. Not with vengeance. Simply because I was raised by parents who, above all else, taught me, ingrained into my being, the value and the importance of truth and honesty.

This year, 2017 has been a year that feels like my life hit the pause button. One of tremendous introspection. I've remained involved in my advocacy efforts and I will continue to stay in this space as we turn the page anew and look toward 2018. I wish to each and every one of you a joyous 2018. In my year of looking inward, I have come to understand that the only way to experience joy so deeply is to fully surrender to every feeling. That which is painful may hurt much more than it otherwise might. But then, if I try to put a leash on my feelings, I would miss the depth and breadth of what I feel in the happy moments. And those moments can be as simple as gazing at a beautiful sunset or sharing a laugh with a friend or remembering a happy time with one who no longer walks this earth. Those memories have become an integral part of my healing process and yes, there is joy. Bittersweet, but still joy.

And so, I emerge from this year; Walking boldly, fearlessly, authentically and honestly into the next, releasing that pause button and at last, I begin the process of turning myself outward.

It's time.

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Grief is Just Messy Love

2017-10-19T11:21:00.002-04:00

"Grief is just messy love."

Last night, those words were spoken to me by someone I hold very dearly. Shortly before hearing that profoundly simple, yet oh so powerful statement, I nodded in agreement when another person, someone I love just as dearly stated that 2017 just sucked in the scheme of life. I concurred. I also inserted a four letter word, you know, the one that starts with an F and begs the purchase of just one vowel.

Quite simply, I'm still grieving Lori's death and in so many ways, I'm near certain that I will live with this grief for the rest of my days. Lori and I had this thing going on. She got it. She got me. There are about a million things that happen in the course of a day when I still grab my phone to send her a text. No long message was ever necessary. A phrase, perhaps a sentence or, in the rarest of cases maybe two, and she knew what I was trying to say. More than that, she knew how to ground me, frequently with little more than a word or two.

There have been and there continue to be many distractions. I've had commitments to different projects and I fulfill them to the best of my ability. I swear she'd send a lightning bolt to my head if she knew I was rolled up on the sofa with a blanket over my head allowing the grief to consume every moment of my life.

I've had life issues that would shatter the best seismographs known to man.

There was the unexpected death of another very dear friend and someone who had my back throughout the current legal wranglings that are ongoing. That happened just weeks before I learned that Lori's disease could no longer be controlled by any of the available drugs or therapies known to wo(man). I haven't had more than a second to even attempt to process that grief.

Mom's disease is stable on scans but bloodwork results have spurred action on the part of our oncologist. Ibrance was added to her treatment protocol. First, it was about her ridiculously high co-pay and getting that taken care of and then, it was about her tolerance for the initial dose. The jury is still out but she did just complete the necessary three weeks on the current, one step down dose and it seems this will be ok for her.

There was a 12-day hospitalization of a loved one tossed into the mix, and the havoc that wreaked, both physically running back and forth to be there within the both of the one-hour blocks of allotted visiting time and moreover, emotionally, advocating for the patient because it's what I do. That episode, I can state without hesitation, shattered my life seismograph alongside the way the whole episode was shattering my heart in every moment of every day. I witnessed things that were just plain wrong and in some cases, downright awful. It should surprise no one that an eight-page letter was drafted and sent to both the head of the hospital and the CEO of the entire health system. What surprised me was the immediate response of their social media team when my frustration bubbled over the top. And what surprised me further was yesterday morning's phone call in response to my letter, inviting me to sit down with top-level hospital administration. Although my letter was written with my loved one in mind, it was also on behalf of other things I saw that troubled me right to my core. If no one speaks, how will they know about the things I saw, who will take action for systemic change if no one realizes there is an immediate need for such change. I only asked that I be invited to join them in future discussions, to provide a patient/loved-one perspective, which will I hope help to improve communication among staff and with patients.

Then, there is this messy divorce. Because the legal matters are ongoing, it's really not appropriate for me to discuss any of that in more than a most superficial manner. I'll just say this. When someone admits to cheating for more than half of a marriage, how damn disingenuous can they be to fight, vigorously and scurrilously at that, over a fair division of marital assets. Time is too precious and having had more than a decade stolen before I realized I was being duped, I wonder, how does that person look in a mirror knowing this legal mess is stealing yet more time. That could make my blood boil, yet I won't allow it to do that. I simply deal with what is being hurled my way in a practical manner, always remembering that, above all, my focus must remain on self-protection. My future well-being rests in the outcome of the divorce settlement. I know I'm standing on a foundation of truth which is being obscured by the clouds of lies, but I have to remain confident that truth will prevail. Unlike some, who like to refer to versions of the truth, I say the truth doesn't have versions. Something is either true, or it's not. Hearing the words "version of the truth" is possibly one of the most oxymoronic phrases I've ever heard. But that's just me.

Emotionally, I checked-out fully and completely early this year when the games became clear, when it became clearer still that the lies would continue throughout these proceedings, when I saw the smear campaign that would be ongoing, when the only satisfaction acceptable to that person would be my utter emotional destruction. The thing is, my emotional angst crippled me a long time ago. I don't hate. I just realize I was living a lie, one I wasn't aware of at the time. I was married. I was committed. The other person wasn't. Today, I feel what I know is the opposite of love. Total indifference. I've wiped away everything, knowing even in what I believed were good times, it was never real. I see the text on my phone, the familiar "Pfffft" which was Lori's response when she wanted me to remember, it's all bullshit, it's not worth your energy, it's little more than a bump in the road, and above all, it was her way of letting me know, "You got this. You SOOOO got this." So, to that situation, I say Pffffft. Life goes on. And in the case of the book of my marriage, life has already gone on even if these divorce proceedings linger for years as I suspect they might.

Too much has already been stolen for me to allow this any more time than it requires of me. Some of us take longer to learn the lessons in any situation, but the important thing is in learning the lesson. I've learned. And I matter. In fact, I matter most of all. If I allow myself to sink into this quagmire, I'm giving my power to others and that will never happen again. Like a kid, I think to myself, "I'm the boss of me." And yes, it really is just that simple.

So yes, I'm grappling with a big bag of shit as my buddy Jack referred to this collective mess, and he has reminded me more times than I can recall, encouraging me not to let that big bag consume me. While so much of 2017 has been an amended version of that book, retitled for my life as AnneMarie's Terrible, Horrible No Good Very Bad (and totally fucked up) YEAR, I wouldn't trade my life for anyone else's because the good things have been that great. They too have shattered that seismograph in the magnitude of their greatness, and my ocean oasis, the place I now call home, has been a source of great healing.

And then, there's this. A memory I'll treasure forever. The video companion to the Cancer Today Magazine cover story of the advocacy efforts of Lori and me. When I need a gentle reminder or a giant nudge, I just go to the video tape. This is a gift I'll cherish forever. How could we have known in that moment of this is us, together, Lori vibrant and alive and engaged, it would be just four short months before I would be standing at her grave. Yes, grief is indeed just messy love. And what I know of love: real love, deep love, true love? It never leaves our hearts. It remains in that special place for all eternity.

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MASTECTOMY MEMORIES, AN ANNIVERSARY OF SORTS...

2017-09-19T08:00:00.000-04:00

Over the past several days, I've driven on the roadways near my home passing the all too familiar signs : "Expect East Side Closures, UN General Assembly." I've listened to the news reporters anticipating this meeting, I've watched as items hit my news feed. And yet, for the past ten years, when I hear the words, "opening of the UN General Assembly," I am immediately brought back to this time in 2006.

I believe I have shared this post every year since I launched this blog. It still feels like it was yesterday and by the same token, it feels like cancer has been part of my life since, well, forever.

Edits in a few places, additions in others, that I would not, simply could not share, until I made the decision to end my marriage of nearly 25 years, but mostly, word for word as it originally appeared when I first launched this blog over six years ago, my memories of Mastectomy Day:

Today. No day has affected me more than the 19^th of September, 2006. Not the days my kids were born, not any stupid anniversary of anything having to do with anyone else either.  This day is about me. It’s about my life. It’s about choices. It’s about fear. It’s about sadness.  It’s about an education that could fill two lifetimes. It’s about learning to self-advocate. It’s about understanding that “solutions create problems.” And, it’s about finally embracing whole-heartedly it’s OK to have a day All About Me. It’s okay if every day is About Me, my dreams, my desires, the life I wish to live. I earned the right.

Kids, I love you but we’ve already determined neither of you is reading this anyway, so no matter, and besides, you already know I will stand behind you unconditionally and if I could, I would move mountains for each of you.

Mom, I love you for paving a path in 1988 when chemotherapy was even more barbaric than it is today and I am appreciative beyond words that your struggles made my treatment much easier than yours. You did spare me. Your experiences taught the researchers how to make things far less unpleasant for me. And when I first wrote this, you were still an early stage patient, approaching that magic five year mark which we now know, isn't really too magical. As you navigate the metastatic maze, I'm beside you every step of the way.

Dad, I miss you and I am remembering that I made you the messenger when I first set foot into this mess. And I remember the email you wrote to me the day you stood in that room right by my side so we all heard those words in the very same instant. "You have cancer." The words that sucked the oxygen from an already overcrowded exam room. That letter is in a frame. You are, and will always be the wind beneath my wings.

And Linda. You didn’t even get two months of playing The Cancer Card before you were forced to share the stupid deck of cards with me. I will never forget how you left work one Thursday morning, five months prior to my surgery and three months prior to my diagnosis simply because I was freaked out about bringing films to a surgeon for review. Only two of you knew what was going on at the time. Only one of you remained by my side for the long haul. And that very same one of you was the single most instrumental person it helping me past my hang-ups. And that same one of you got me off the ledge when my confidence was shattered and my body image was (self) decimated. And that one, was you Linda, my forever friend, my sister, my confidante, and the person who was squarely placed in the midst of my current divorce mess by a man that I don't think I ever knew. He tried to break us, but we proved that what binds us together is stronger than what any person can ever do, or attempt to do, to destroy those bonds of deep friendship. My love is deeper than the ocean upon which I gaze, each and every day, in my beautiful and peaceful new home, my oasis.

That is by no means an all inclusive list. Indeed, it’s primarily a Mostly Excluded List. My entire family rallied by my side. And this was written to remember 2006, and written long before the many dozens of people who have since come into my life, lifting me to heights I never dreamed possible, all thanks to what began from this silly little blog.

Eleven years ago, I altered my body. Five months after I received The Letter advising me of the “density” that was presumed to be nothing but was worthy of another look, I was waiting to be summoned into an operating room. I have come to realize my short-term memory (more accurately, my working memory, which by the way, IS different from short term memory) has been somewhat uncooperative. That cloud has produced a rainbow. No, cancer isn't a gift or the silver lining of any cloud. The chemobrain mess has made my recollection of older episodes pop into my head with much greater clarity than I recall pre chemobrain. For some of us, there’s an upside to things, almost everything. If you look hard enough. If you can REMEMBER to look, that is... and I've since come to understand there is a science to this. It's called post-traumatic growth but that's a post for another day.

Back at Memorial Hospital, NYC, circa 2006, the opening day of the UN General Assembly is now inextricably connected to me, to my breast cancer and to the decision I made to have a bilateral mastectomy. Our brains have weird ways of connecting things. There are reasons why this UN thing is intertwined with my cancer. It was (unbeknownst to me at the time) the reason why every hotel room on the entire island of Manhattan was occupied. No room at the inn. At any inn. Just a room in Memorial. An operating room. Following by a recovery room. Followed by a semi-private room with a view of the UN building. Today, the city is likely an utter traffic nightmare with the leaders of every country on the planet, once again, converging on the isle of Manhattan.

September 19, 2006. This would be the third time I was going to be greeted by the operating room staff in less than 60 days. I knew the drill. The pre-op clearance within days of the surgery, the phone calls I could expect the day before, first from the nurse to review all the last minute instructions and then from the scheduling staff so I would know when to arrive. There is nothing pleasant about waiting for the phone to ring. I was jumping out of my skin the entire day.

And that entire day, I was also still working in my office from my home. Running the administrative and financial side of a mid-size commercial construction company, and tying up all loose ends. I think about that now, eleven years later, and realize, I should have known my marriage was already unraveled. Why was I still tying up loose ends? I knew what needed to be done weeks before, but even with a cancer diagnosis, staring down the face of a mastectomy, I was preparing reports until well past 3PM. There was a series of endless arguments with a man who supposedly loved me and claimed to be worried about me, yet it wasn't until the eleventh hour, that he finally listened to what I was saying. I would be in no shape to handle payroll within four days of this surgery. I can still recall the words rolling off his tongue, and they still sting if I allow myself to go there. "Women get boob jobs every day, why are you making such a big deal out of this?" Today, at the eleven year mark, I wonder how little confidence I had in myself, how I allowed myself to believe the horrible lies he spoke, how I minimized every feeling, and how grateful I am that I finally stepped from behind those shadows to allow myself to become the woman I am today. Strong, confident and free. But eleven years ago, I was still grappling with the how and the why of a shocking and yet not, cancer diagnosis and a partner who somehow made this all about him and what was best and easiest for him.

I don’t think I slept the entire night. I know I had to be up early. I remember jumping in the shower that morning. I stood in the shower taking a long look at Me. My tears were producing far more water than that which was coming from the shower. And I cried in silence. This was a personal moment. It was a moment between me and my body. And, what would be happening in a few short hours was as a result of a choice. My choice. I had clear margins when the surgical biopsy was done. I also had a diagnosis of invasive lobular breast cancer. And that whole family history thing which has just amped up over these past ten years.

I still have the copy of my pathology report where the surgeon drew the box explaining “clean margins” and then placed little dot marks of ink inside the box.  It was when she said, “The question is how do we know there isn’t a dot over here?” and that dot was OUTSIDE the box that my brain began to engage. I knew I needed to start thinking outside of the box about how I wanted to proceed with treatment. And that is how I came to find myself at Memorial Hospital, what most of us refer to as Sloan Kettering or MSKCC, on September 19, 2006.

I don’t recall getting out of the shower. I don’t recall getting dressed. I don’t recall the drive. I don’t recall walking through the underground hallways that connect the garage to the elevator banks. I remember crying in the shower as I stared at my body. I remember feeling the soap and the water on my skin. And the next thing I remember is exiting the elevator to check in on the surgical floor. Those 90 minutes in between, blocked out. Gone.

What happened next is just a jumble of memories. They are all out of order in my brain. This, I am sure has nothing whatsoever to do with chemo brain but is a function of being as scared as I have ever been in my entire life. Fear had me in a chokehold like nothing I could have imagined or anticipated.

I remember changing into what would be my attire for the next several days, The Blue Gown(s). My belongings were in a hospital tote. I remember being escorted to the nuclear medicine area to be injected with more radioactive dye for the sentinel node biopsy that would have to be performed on the good breast. “If something unexpected comes back with the pathology, the only option will be to remove all of the lymph nodes.” I remember how I wanted to punch the nurse for not being as adept at administering the injection as the nurse a few weeks prior. In hindsight, I think I judged her far too harshly. I was a very different patient on this day than I was weeks prior when I was simply have my lymph nodes checked on the other side.

I remember how everything was behind schedule that day. I remember the kindness of the young man who was my tour guide between the surgical area and the labs. And I remember sitting and sitting and sitting with the blue gown and the blue socks. I remember seeing Dr. Hot Plastic Surgeon enter the surgical waiting area. He was looking for me. Because I had incisions from two prior, recent surgeries, he wanted to provide the breast surgeon with a roadmap. When he was done making his graffiti marks with a sharpie pen, I officially crossed The Line. After emerging from the graffiti zone and back to the surgical waiting area, I began to tremble. I don’t remember anything else during that long wait. I think, at some point, I must have had a clonopin hidden in my gown because I seem to recall swallowing the pill with no water.

Although I only recall these snippets, knowing today how little I was supported throughout the entire process, that day eleven years ago was likely no different. My sense is that I was dealing with impatient pacing, visits to the desk to demand answers for the delay. I don't recall a single human touch. Not the gentle stroke of a hand perhaps brushing back my hair, or reaching out to hold mine. Not even for a second. I don’t remember when I was finally called. I don’t remember walking to the operating room. I don’t remember those doors separating the hallowed halls within the surgical area. I don’t remember much of anything upon walking into the OR. I do remember the nice blue pillow that was on the table the prior two times was not there. Instead, there was a horseshoe shaped thing upon which to rest my head. I do remember my mind beginning to race. “They are going to intubate me to do this.”

Before I had a chance to freak out, everyone began to greet me as if we were going to have some grand party. These people were simply at work. I was a visitor to their place of business. And they were being cordial and kind and wanted to make sure I was properly welcomed. No less than 10 people were in that room and every one of them greeted me by name. And the flurry of activity began.

“Blood pressure, cuff, AnneMarie.”

“This is sticky and cold, AnneMarie, I’m sorry.”

“I’m Dr. Feel Good and I’ll be starting to sedate you shortly.” (Ummmm, yeah… couldn’t we just skip right to that part immediately upon my arrival hours prior??)

And finally, the familiar, “Can you spell your first and last name please?” while my wrist was being examined by another person. Just checking.

“Date of birth?”

And then, the dreaded, “What is going to be done today, AnneMarie?”

These people are all extremely soothing and wonderfully kind and display compassion and empathy that I’ve yet to witness in any other place.  But STILL.  I don’t know how I politely replied but my brain was screaming, “LOOK AT THE FUCKING WHITE BOARD THAT TAKES UP THE ENTIRE WALL-IT’S ALL THERE!!!”

And, then I heard a flurry of activity, “AnneMarie, can you hear me? You are in the recovery room. Are you warm enough?” Nurses. Possibly the noblest profession on the planet. The recovery room nurse remained at my bedside and took good care of me. I was groggy and it was already fairly late. I don’t think I sustained two consecutive moments of “awake time” for another ten hours. I remember being wheeled through what felt like gallows. An underground labyrinth-a bumpy road with wobbling wheels. I remember being lifted into a bed. There was an aide who remained at my side in a chair throughout the night. It was 10PM and no, I did not know where my nipples were. And yes, it's been eleven long years and I do miss them. My new tattoos are fabulous, but I miss what I was born with. Those parts. I miss them. Still.

I remember waking that next morning surrounded by no less than six doctors. That’s what happens in a teaching hospital. And, I remember I was not bound.   The doctor gently opened the Velcro on the surgical bra to change the gauze and check the incisions. Nothing was taped to my skin. The gauze was loose.  The doctor asked me if I wanted to look. I just remember staring straight at the ceiling and I remember the tears falling on the pillow. I didn’t even respond.

The second round of doctors arrived about an hour later. Seven AM and six different doctors. I remember there was a female doctor and I remember she was gently trying to suggest I look at my mutilated body. And again, the tears fell. This time, I remember mumbling, “I can’t.”

I do believe the next doctor who came into the room, did not arrive with an entourage. She was soft spoken and she was kind and in reflecting, I think she was sent in for the sole purpose of my psychological well being. The sooner you look, the easier it is to jump that first hurdle. I still hear her words, “I think you will be surprised, you should look.” Through streaming tears, I looked. I didn’t realize they would begin filling the tissue expanders in the operating room. Yes, I was surprised I didn’t look like a boy.

But I was more saddened by the loss of what was part of me. It wasn’t until five years after the surgery that I finally began to come to terms with The New Normal in The New Body. It took me five years to properly grieve my loss. I am now and was then, surrounded by a large and loving family. In that moment, I never felt more lost or more alone.

Six years ago, I finally gave myself permission to FEEL the loss. When I felt like crying, I didn’t fight the tears because that's what you do when you have strong shoulders, when you minimize everything, when you buy into the cruel words couched as encouragement when it's not encouragement you need, but rather validation and a soft shoulder upon which to cry or someone else's strong shoulder upon which to lean, when you think you can just handle anything and everything life throws your way. I cried softly, I sobbed loudly, I screamed, I tried my feel good music, I tried yoga and ultimately, I just had the funeral I never held because, after all, the world, and particularly the one person who should have helped me honor my true feelings, has been telling me forEVER that I should be grateful. Good cancer, mild chemo, how dare I allow anything other than, It's Fine, I'm Fine crack the facade.

Six years ago, I FELT everything that I had been shoving aside for too long. And I've been gentle with myself for these past six years and now I am at the eleven year mark. Over these past six years I've finally embraced that I will always be gentle with myself. I will always honor my feelings. I will never turn away from that which brings me pain because pain it a part of life. It makes the joyful moments so much sweeter.

And I've learned that I am enough. I am good enough. I am capable enough. I am strong enough and when I am weak, that's okay, too. I now stand firmly in my beliefs. I make sure to take care of myself, because if I've learned nothing else, I've been forced to learn that no one is going to care for me or about me, with what's best for me as their touchstone, as well as I will care for myself. And I'm learning now, too, to stand on my own two feet. Only recently have I realized how cancer and the fallout brought me to my knees, and I've been on my knees for far longer than the eleven years since my diagnosis. Today, however, I'm standing. My ankles were a little wobbly for a bit too long, and there are many pieces still being glued together but today, I'm whole again. For the first time in who even remembers.

My life is beginning again, forget about a new chapter.... this is a whole new book and for the first time, I'm flying solo. And I'm comfortable and happy with the whole thing.

At long last, I'm me. Finally, I AM.

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A FAREWELL, and A Love Story

2017-07-25T23:58:00.000-04:00

This was written on Sunday morning before I went to see Lori. Please hold her and her family close in thought.

It's time for me to say goodbye to my friend. My heart is as heavy as its ever been and yet, it is so full of love. The depth of that love is limitless and that love will live on forever, despite the fact that our days together on this earth are coming to an end.

Lori isn't just my friend, she's my soul sister in every sense of the word. I have been carried from the fires of hell by the sheer force of Lori's love and concern, her fierce protective nature, her persistence in demanding a better life for me. She saw my future when I was too blinded to see much of anything. As I spun out of control, Lori, living with a terminal illness, was the one who remained calm and focused. It was Lori who guided me, gently at times, and forcefully when necessary to the beautiful place where I find myself today.

I closed a chapter that should have been closed long ago and Lori was instrumental in helping me turn the page. She knew exactly what to say, when to say it and how to phrase her words such that I would hear the message, and be compelled to take action.

And today, my heart is shattered in ways I could never have imagined possible.

Most recently, I was describing our friendship, really, our "love affair" and I expressed how I believe there are those who might live ten lifetimes and never quite experience what we share. Each of us quick to credit the other, each quicker to jump in to help, each rolling up our sleeves to make things happen. We sense each other. We finish each others thoughts, as if we share one brain. Some of those with whom we've had the honor to work beside have often joked that it's like they are hearing things in stereo. The biggest difference is my tendency to take forever to formulate my thought when Lori very quickly and succinctly captures the essence of the moment in a simple phrase.

This always, and still, amazes me. I can't count the number of times I'd simply remark, "Yup, what SHE said!" Those closest to us know how this works and just laugh. They know. They know, for the most part, what is said by one of us, is meant by both of us. On those rare times we didn't agree, there was an uncanny ability for us to discuss our points of view without ever going off into the proverbial weeks. We discussed the topic, we listened and we both learned. Lori might argue with me, but I'd say I learned far more than I ever "taught" yet, there was never a competition. Not. EVER.

Lori helped me be the best version of myself I can be. She laughed with me, she cried with me, she lifted me to do things I never believed I could do. She knew. She saw what I couldn't. She assured me I could and I followed her lead, embraced her suggestions with absolute blind faith and total trust, safe in the knowledge that she would never let me fall. And, she never did.

When I met Lori online, she was in the midst of watching climbing tumor markers, waiting for a diagnosis of metastatic disease. It would finally happen shortly after we began having private conversations outside of the public social media circles where we originally connected. How grateful I am for the visions of Alicia and Jody to build a twitter community around the #BCSM hashtag, and how grateful too, for Dr. Attai who embraced the hashtag from its inception, to help it become, not only a place of support but also a place that all could turn for accurate and reliable information.

I am her #FearlessFriend. There have been more than a handful of times I believed myself to be nothing more than a Shitty Cancer Friend, doing all of the things I knew NOT to do. I would find myself crying over the circumstances surrounding setbacks, and progression, and all of the other lousy things that occur along the disease trajectory for those living with metastatic breast cancer. Very matter of factly, she would state, "Sweetie, but we always knew this day would come."

Today, there is no room for the Shitty Cancer Friend. Today, I am fearless. Today, I will sit beside her, holding her hand, letting her know how deeply she is loved, saying goodbye for what will likely be the last time we will be sitting side by side. I will let her know I will preserve her legacy, make sure she is comforted in the knowledge that her legacy will live on forever, and most importantly, that her son and her husband will always know she didn't surrender to this disease, she didn't give up, she didn't stop fighting, she's not a warrior who lost a battle. She's a woman who lived a full and beautiful life. She's a woman who fully embraced every opportunity, who made a difference in the lives of more people than she wants to believe she helped, who spoke out against the things she knew to be wrong without ever alienating anyone.

I will surround her with love and support. And I will wish her Godspeed as she closes this chapter of her mortal life. And I will assure her over and over again, that I will pick up everything that she left unfinished and see it through for her. All of it. Whatever is needed. Because she would do that, and oh so more, if the table was reversed.

Cancer doesn't play fair. It's cruel and it's relentless and we are nothing more than pawns being picked off, or knocked down at will. I will continue to push for you, my love. I will do whatever I can to make sure everything is (almost) exactly as you would have wanted. I'll do my best.

I will miss you, Lori. But then, I didn't have to say that.... Of Course You Know That.

I will love you always, and always, I will look to you for guidance, for answers, for help.... for everything. Nothing will change for me, except I'll be seeking answers, instead of from a text response or a ringing phone, I'll search for the answers inside my heart where you will live forever. A piece of it is gone, and it will never be filled again. It belongs to you as it has since the moment we met, and it will belong to you for the rest of my days.

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COMMUNICATING WITH A CHEMOBRAIN

2017-03-19T13:21:00.000-04:00

As some of you may have read in my prior post, I'm undergoing a rather massive life change. This, however, is not about that. At least not directly. Actually, I believe it goes right back to the beginning. To the reason I launched this blog. To talk about the silliness of chemobrain.

Except, this is not going to be about silliness. It's going to be about the difficulties I experience when I'm communicating in real time and what happens when conversations become serious and important. To say that there has been lots of important communication in recent months barely scratches the surface. Plenty of people get very frustrated when they try to communicate with me because it has become too easy for me to meander into the weeds, and then, get stuck in those weeds. This becomes a bigger issue when the conversation demands I return to the original statement. Without being guided out of those proverbial weeds and reminded of that which has already flown out of my mind, this is a problem.

The quick primer. We have long term memories and short term memories. For me, long term memories seem to have taken less of a hit than my short term memories. Many of my long term memories seem to have become more vivid with time. Is this because my brain has more free space because I'm dropping other memories? No clue. I read the research. I know different parts of the brain have different functions so I can't state that the increased clarity in my very old memories is for any reason at all. No science, therefore, no speculation or suggestions. Just an observation.

Sometimes, I am able to recall in great deal an event that occurred in recent days or weeks. Sometimes, it's as if the event never even happened. Other times, it crystallizes and when that happens, fragments of the crystal may fall off the memory. Since the short term memories are frequently what builds on the day to day responsibilities, this can be a real problem. Perhaps this is best explained like this. I might have had a discussion with someone, promised I would have something done, wrote it down, buried the "to do" list with a bunch of other things and a snippet of that memory jolts back into my brain. What happens next is I turn all of my paperwork upside looking for the note to remember exactly what I was supposed to be doing.

Then, there is working memory. Working memory is what is happening in real time, right now. As I'm typing this post and trying to capture the thoughts in my head to put them down on paper. I journal ALOT. I don't want to lose important snippets of things. I write notes. Also, ALOT. I try to do this when I'm on a conference call or really, any type of call that is of importance, whether it involves the work I am doing or for a personal matter that must be brought to an acceptable resolution. If I am sitting in a meeting, and I wish to ask a question, I write notes and I frequently write out the question before ever lifting my hand to indicate that I'd like to ask something of the speaker.

I haven't read much of the most recent research, primarily because there isn't anything that I've seen that is going to change the circumstances for me in this moment. It's not that I don't care, because I care deeply. It's just that there are only so many hours in a day and when it's already taking eight hours to accomplish what should be done in under three hours, life can be a challenge. With that caveat, everything about chemobrain was pointing to working memory and those so called "work around solutions." Use your phone calendar for EVERYTHING. Keep To Do lists (not helpful, I currently have about six, four of which I can't locate). Keep your work area tidy (also not helpful if I'm forced to switch gears quickly, things pile on top of each other). Plenty of others, but since that's not the reason for this post, I'll leave that right there.

The absolute WORST thing that can happen when someone lives with this shitty condition is to badger them during a conversation. I know that people, even people who know the problem exists, can get very frustrated when trying to carry on a conversation. I know that, like mental illness, chemobrain is a disease of the brain in some form or another. In other words, even though others may have accepted this, or say they understand, there may be far too times, they truly don't understand. And honestly, I get it. There's no pill, there's no surgery, there's not even therapy interventions that have shown any promise. When you can't produce a medication, or show the surgical scar, or demand your therapy notes as proof, we may be dismissed as having "convenient" memory lapses, or even worse, of outright lying.

Instead of calmly saying, "Don't you recall saying this....." let me give anyone who is living with a person suffering with chemobrain a word of advice. Shouting, making accusations, demanding responses is not only unhelpful, on many levels it's cruel. We get the frustration you are feeling and trust me, our frustration is on the same plane as yours. I'm trying not to make this into a competition. In the spirit of understanding both persons are feeling the frustration, I don't want to say I'm in worse shape because I have a disability. I will say that I feel like I am at a terrible disadvantage when conversations are necessary for clarification and I'm not given the time to pause, truly understand that we are on the same page and then respond, AND HERE's the KEY... to the best of my ability and to the best of my recollection in that moment. Sometimes, it will be hours later and I will recall an important piece of information because of my journals or because I've had the time to sit quietly and reconstruct a series of events. By that time, it's too late to revisit the discussion.

I am not Mother Theresa or any other saint. I have made plenty of mistakes along the journey known as life. I do my best. I try. I give it my all, or I don't do it. If I'm not capable, I'll be the first to say thank you, but that's above my pay grade. I'm not all that, I don't proclaim to be all that. I'm just me. AnneMarie.

I'm also not a liar. I was raised with integrity and honor ingrained in every fiber of my being. I have embraced the philosophy of those who are guiding me through this present maze. Live authentically. Let the truth be the foundation upon which I stand. Be honest when loved ones ask me questions, no matter how much it may hurt to speak a truth about a wound from which blood is still flowing freely. But I do this. Every day, I do this.

And yet, I'm still badgered. I'm still presumed guilty until I can prove otherwise. I'm in quite a mess. And although I know the knee jerk response, especially from those who get it will be, "Ignore those people." There are some I can (and I do ignore) and there are some I can't. There are persons who mean far too much to me to write off.

When I must have those conversations, and I must share the truth, please, give me the chance to speak. Please allow me the moment to pause, and don't think it's because I'm angling for a way of responding to cast myself in the best possible light.

I'm simply trying to remain honest, to be true. Please. Be gentle with words, with tone and just be patient. No I am not the same. I'm living in a stressful situation and being badgered for answers to questions can drop me to my knees, bring me to tears, and create terrible distress.

If you happen to be close to someone who has the problems I live with, and you recognize yourself in any of these words, I implore you to try to understand the communication dynamic and to have a bit of empathy. No shouting. No demanding answers. No cutting the person off mid sentence. No patronizing. A simple, "Time out, that's not what we are talking about," will suffice. And, if the person feels there is other information that speaks directly to what is being discussed, give them a chance to say what's on their mind. When that takes them into those weeds, help guide them out.

I can't speak for all, but I can speak for many. Our actions are not deliberate. They are not to undermine. They are not to cause harm. They are not to frustrate.

Simply stated, in any given moment, it may be all we got.

And just because we do have days of complete clarity, know this. Those days are gifts because in this world, in my chemobrain world, they are far and few between.

Most days, I struggle for clarity. Presume I'm struggling. Don't back me into a corner because once there, whatever bandwidth I DID have for a productive conversation has since flown right out the window.

Not looking to upset anyone, but this is me, in 2017. My last round of chemotherapy, specifically CMF (the mild chemo), was exactly ten years ago. March 20, 2007. It definitely worsened over those first few years. Today, it's stable but there's been not one iota of improvement. Said another way, it seems this new way of life is permanent.

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MY GIFT FROM THE SEA

2017-02-26T19:20:00.000-05:00

I have so many irons in the fire I'm not sure writing a blog post is the best use of my time but it's important for me to do this. Today. Now. In this very moment.

When one chooses to launch a blog that is so personal in its nature, it can be challenging. None of us lives in a vacuum and yet, so much of our lives involve the lives of others. Whether children, spouses, parents, friends or siblings, their privacy is something that must be respected. Just because I choose to bare my soul, or my chest and their new tattoos, or talk about how I'm reclaiming my sexuality with Mona Lisa Touch, where is the line?

Make no mistake, there is a line and it's one that must be respected. I have felt such a connection and such a sense of community from the first day I hit the publish button. If I was going to do this, if I was going to take on the challenge of launching, and then sustaining a blog, it was going to be authentically me. I was encouraged by a dear friend, validated by my yoga instructor, and coached in the beginning by a volunteer mentor in the Visible Ink program at MSKCC.

I let the words fly across the page, tossed out any "Blogger 101 Rules" that may exist for some and decided, I am enough. I would simply speak from my heart. I have been joyful, and I have been filled with deep sorrow. I have shared what I believed was justifiable outrage at times, and I have expressed my fears but some of those fears were so scary, they remained locked in a place where I could not even glance. I've shared much about research which I have come to realize is where my advocacy passion runs deep.

Many of you know my messy family disease history as it pertains to breast cancer. Many of you may know my mom is living with metastatic breast cancer since 2013 and has been responding to the same treatment regimen since her diagnosis over four years ago. So many of you held me up when I tried to wrap my brain around that cruel twist of fate: hearing the word metastatic. That cut like a knife. That mom is still responding to the same treatment and that you have all been here? Gratitude. Deep gratitude. Gratitude for which I have no words.

What many of you don't know is that I have been living a messy personal life, too. In pain. Not physical pain, but emotional pain. In many ways, I have been living a lie and that lie has stolen years. Too many years. There is a backstory known to very few people. You know who you are and for holding me up, every single day for so very long, and to those who may not even have realized what their encouraging words for seemingly no reason have meant to me, my gratitude is as deep and vast as the ocean I have been gazing at for the past year of my life. For the one who reminded me, "as long as I've known you..." No Words Will Ever Suffice.

Aside from a handful of places in hundreds of entries, I don't think the words, "my husband" appear too many times in this space. Yes, I am married and I have been for many years. Legally, yes, I am still married but with divorce papers now filed, the time has come to step outside and beyond the shadow of "my husband."

I moved from a large home in a nice suburban community outside of NYC to a two room apartment in a beach community that faces the Atlantic Ocean. My apartment is furnished, which is to say, it's really not home. This year has been a stepping stone. Either I would find my way back to my marriage or I would have to step forward and move to an entirely different stone, one where I've never lived.

Never.

Ever.

A stone with a home that will be solely my own. I lived with my parents and my siblings, then with husband, and children and now, I venture out on my own. By myself. For myself.

It has taken an entire year of living by the sea for me to become one with myself. Getting my heart, my head and my soul on the same page has been one of the most difficult things I've ever had to do. As the clock on 2016 was winding down, I was finally able to do just that. I realized that it was time to close the chapter on my marriage and begin writing the next chapter.

In many ways, these past five years, writing this blog and following the path where it continues to lead me, has been the chapter in between. And yet, it wasn't until I gained clarity watching the waves washing over the sand as the tide rolled in and out each day, every day that I realized I have been standing at this same crossroads for far too long.

For an entire year, I walked the beach. I got to know myself. I amassed a shell collection that is quite beautiful, albeit some might claim, a bit excessive. Who even KNEW the sea tossed these shells on to the shore on the beaches just beyond NYC limits? I became more and more comfortable in my own skin and realized I was living inside the skin of someone else.

I learned that a caterpillar sheds its skin five times before emerging as a butterfly. It wears, and then outgrows each of those five skins. There's symbolism in there, although my mind can't quite grasp its full meaning today. There's further symbolism in the struggle of the butterfly to break free of the cocoon which is what strengthens its wings. I'm not too sure how strong my wings are, but today, I am finally comfortable stating that I am no longer married, that I am a single woman. I have no idea what that means, or what it even looks like, I just know it's not who I am. It's what I am. Who I am is defined by many different things, the least of which is my relationship or marital status.

Legally my name is unchanged until this chapter is closed by a matrimonial judge. Hopefully that will be months and not years. Unfortunately, that is beyond my control.

I know when that day comes and I can reclaim the name I was born with, it will be to make certain I am honoring the man who gave me life, the man who cherished me and respected me, the man whose honor and integrity is head and shoulders above that which I leave behind.

I shed my skin.

AnneMarie Mercurio is about to emerge.

And yes, November 10th happens to be the day I was born, and that is from a book called The Secret Language of Birthdays. Say what you will, I say, if the shoe fits...

And on another note, with still more gratitude, it was suggested by a very new friend that I read Gift from the Sea by Anne Morrow Lindbergh. It was written in 1955 and I don't know how I never heard of this book. It's on my kindle. Only four pages in, I feel it was written for me. Hence, the title of this blog post is a nod to the book and a nod to the sea for giving me back my life.

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CHOICES AND DECISION MAKING

2017-01-07T20:16:00.000-05:00

Translational research is, in very broad and simple terms, the ability to take science from the lab and make it useful to us, the patient. This can take years. And years...

Cancer Moonshot, which is safely transitioning beyond the current administration, hopes to half that time. Sidebar and personally speaking, I'm proud to be on the fringes of any project associated with Moonshot and I'm deeply gratified to see the dedication of the scientists who are putting their hearts and souls into this initiative.

Precision medicine has been defined as getting the right medication, to the right patient, at the right time. The research and the optimal way to deliver treatments to patients are intertwined. Two sides of the same coin, if you will.

Translational research for the patient population is translating the research so that is actually means something to us. Using language that is familiar to a lay population. (OK, so that's not in any official definition of translational research, but from a patient point of view, I'm using the term "translate" in a very literal sense, making it my own. Allow me some leverage here.)

Having been involved in research meetings and on a number of different projects over the years since 2012 when I realized I love this stuff, I listen closely to the research findings and somewhere along the way, it became evident I had to learn a new language, too.

Statistical significance is an accomplishment for researchers. In science, this means that the study achieved its goal. Research was able to prove that A was better than B because "A" was a certain percentage better than "B" at the end of the day.

What does that mean to the rest of us? Unless it's put into real world context, not a whole lot.

Patients who took Fulvestrant 30% less likely to die of ER+ metastatic breast cancer compared w/those who took anastrozole #SABCS14

Let's look at the tweet above, reporting a particular finding from the 2014 San Antonio Breast Cancer Symposium as an example. Please note: There is new research so the validity of the statement is not the relevant bit of info. I'm merely using this so we can learn how to ask questions to aid in decision making by having a full and complete understanding of what we are being told.

For starters, to see 30% less likely to die, as a patient, I'm all over that. And, for what it's worth, this particular study should force a change in first line treatment of metastatic disease. Bottom line, until metastatic patients "fail" on arimidex, they are not switched to faslodex. From that point of view, why should we wait to have the drug fail us before we are offered a better option. That's something that must be addressed with the insurance companies that pay for this stuff. Lives matter.

Since this is a reworked version of something I posted in 2013, I'm happy to say that in NYS, this Fail First thing is now something that must be adhered to under the requirements of a newly signed law. Step Therapy, as it is officially referred to, is now addressed in a law with very specific requirements and directives. In theory, doctors should have the last word, not the insurance companies. Since the law is new, I await the horror stories or the loopholes that may be exploited. I hope I'm wrong. Stay tuned.

In 2017, fulvestrant is now widely used. For the purpose of this discussion, however, I'm trying to make a different point: What exactly does that 30% mean?

Six months. To be precise, 5.7 months. When you are staring down a fatal diagnosis, to be given six additional months is a big deal. However, when I read 30% "less likely to die," from a patient point of view, this is what I see:

"Seven people will die, three won't. Maybe I'll be one of the lucky three."

And therein lies the rub. That's inaccurate. The study is clear. Death is imminent. The amount of time has been increased by 30%. Out of context, even if I understood that concept, that it was time to death, we are still missing crucial information. What is the base from which we are working? Without that information, 30% is no different from hearing blahblahblah. If we are, for example, starting at ten years, we've just gained three more years. Quite a difference from 5.7 months.

Then, there are treatments for prevention of recurrence, and this is where shared decision making becomes equally important. Using that same 30% as a measure of reducing risk of recurrence, the real information lies in this. How many women must be treated to derive the benefit? If, for example, 100 women would need to be treated to prevent 2 recurrences, THAT is the information that should be discussed between doctor and patient.

That is the only true way for us, as patients, to weigh the risk associated with any treatment against the potential benefit. Some of us are risk takers, some of us are not. Some of us who are risk averse but can't bear the side effects, need to know that a decision to stop a particular treatment in favor of quality of life, are not writing ourselves a prescription for disaster.

Without information, in context, presented in ways that the rest of us can understand, there can be no true shared-decision making based upon the actual evidence. It's all relative, yes. But some of us don't understand the theory of relativity. Speak to us in ways we can understand.

The era of patient centered care, of precision medicine, has made this a bit challenging. Sometimes there are many different qualifiers (age, hormone status, genetic biomarkers). While there is no cookie cutter answer that works for all, each of us deserves to have, and most importantly, to understand, all of the available information so we can play a role in guiding our treatment.

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MONA LISA, THE TOUCH AND THE SMILE

2016-11-30T09:00:00.000-05:00

It was a little over a year ago. I was at a small seminar. The room was arranged with the tables in a rectangular layout. At the far end, a screen for any power point slides. Around the other three sides, a group of about 20 women.

I think, if memory serves, there was one young man in the room. Poor guy. I'm sure there was a point that he wanted to crawl under a rock.

Put a bunch of women around a table and someone is bound to make a wise crack. What happens after the wise crack is made generally depends upon the woman around the table. On this day, we were a group of breast cancer patients, some of us post treatment, some in active treatment and some living with metastatic disease.

Between the chemobrains and the list of topics, it can be funny to watch and at times, a bit difficult to keep up. The conversation turned to quality of life and quality of life quickly turned to a discussion about quality of intimacy and the downright painful side effects many of us experience from the estrogen-suppressing medications we take. The way some of those medications wreak havoc on our skin, starting with the most sensitive skin like the thin skin under our eyes and well, to be quite frank, the pain some of us live with just by walking.

OK, so I'm really not trying to gross anyone out but it's a fact of life. It's part of the normal aging process but those cancer drugs tend to take the aging process and move it at warp speed. Chemotherapy induced menopause, tamoxifen, aromitase inhibitors like letrozole. Havoc. On Steroids. In some cases, literally as a part of the treatment protocol.

As the discussion bounced around the table, I was sitting directly opposite someone who, should she choose, can identify herself in the comments, was a bit quiet. She glanced at me and in a small voice, she said, "Mona Lisa Touch." I looked at the woman beside me and now we were both glancing across the table. "WHAT?" With a slight smile on her face, reminiscent of the upturned lips on the famous painting, again she said, "Mona Lisa Touch, just google it." As I was scribbling furiously before I forgot the order of the words because yes, it can happen that fast, the person seated to my left already had her phone out, googled it and handed the phone to me.

I have had Mona Lisa on my mind for a year. But, I had those nipple tattoos on my mind too and I took the path already paved for me. I knew what to expect, I knew where to go so the nipples got done and Mona Lisa remained "in the parking lot." (Another day, there will be an "in the parking lot" post for those, who like me, have no clue what that whole parking lot thing means.) Mona Lisa Touch was on my "must investigate" list, aka my parking lot.

I've been so damn distracted lately, seems like I'm running around like a chicken without a head. Sometimes, email messages can sit for days. Sometimes, I read them on my phone and then, they could be in the email abyss. Thankfully, I didn't miss this email. It was from someone who is helping promote Mona Lisa Touch. She sent me a lovely and detailed email, included some journal publications and asked if I'd be interested in writing about the procedure in the space. In order to do that, I would be connected with a local doctor for complimentary treatment.

I was like Meg Ryan as I read the email. "Yes, Yes, YES!" my brain screamed and as soon as I emerged from my Harry Met Sally moment, I composed a dignified and proper response. Last month, I had my first of three treatments. Just 48 hours ago, and now round two is in the books.

Coordinating this was no easy task. I was running in and out of town for a few different meetings and then, the doctor was on vacation. All I will say about the wait, it was well worth it. It's no secret how I feel about being a partner in my care and I did look up the doctor who would be administering the treatment. She passed my first round of testing. She was great on paper. When I met her, well, let's just say in the course of this, she identified something that will require minimal surgical repair and although she quickly said she could arrange for a colleague on Long Island to take care of me, by that time, I just shook my head and stated, "Nope, you're my doc."

My first appointment with Dr. Nicole Fleischmann was on October 18. I immediately wanted to acknowledge my experience with both Dr. Fleischmann and Mona Lisa Touch on twitter and they certainly made it easy enough when I found this tweet.

What was it like? How do I feel? I can answer the first question, but not the second just yet. We spoke for a bit before she brought me into the treatment room. She duh, took a complete history, especially as it pertained to surgeries. The hysterectomy thing is kind of a big deal. No cervix and she's going to perform a vaginal procedure? Yes, I'd say that bit of info was important.

We then talked a little about the procedure. She explained that she gets the best results if she performs an internal treatment and an external treatment. She let me know I might feel like I have a vaginal sunburn which begs a few questions. Even if I were inclined to sunbathe in the nude, I'd have to strike some pose for that type of sunburn. Would it be appropriate to use sunblock? I'm guessing not but even if that were ok, wouldn't I need something like an SPF2000.

The procedure itself, despite the fact that she did what might be considered twice as much lasering, was finished in less than ten minutes. I felt nothing. In fact, the only thing I recall is being handed goggles to protect my eyes and then a whole mess of chatting about our personal lives. Funniest moment. The portrait of the Mona Lisa in her office. Her staff gave it to her, but not before they had her face superimposed under Mona Lisa's smile.

My ride home was about an hour. Traffic not so bad and discomfort from the treatment non-existent, despite the fact I was not really dressed in appropriate attire. Sweat pants would have been a better choice than the jeans I was wearing.

I did not expect to notice any real difference until after the second treatment. Since that was done this past Monday, there will be an update. At the moment, I'm on the same 7-day ban on intimate relations as I was after the first treatment. Dr. Fleischmann wanted to make sure I derive the full benefit of Mona Lisa Touch so the treatment was more extensive or my body is just that much more of a mess than most. Normal ban? Two days.

Frankly, this messy lubricant thing is getting on my last nerve. I'll keep you in the loop as I fully expect to have a ceremonial garbage toss if the need for said lubricants is eliminated. Every time I see a commercial for the competitor of the little blue pill mentioning something about ruining the moment, I don't even try to hide my loud sigh and dramatic eye roll. Ruin the moment? Nothing that screams romance quite like, "Pass the K-Y." (insert sarcasm emoji) They can try to make those commercials seem like the K-Y is all fun and games, but spontaneity is where the fun is.

Joking aside, completely aside, feeling pain when what my head knows I should be feeling pure pleasure, UGH. Sandpaper skin exponential UGH. Intimate relations may be considered optional to some. I would not be in that group but, walking is difficult to eliminate from the daily activities. Using any sort of estrogen cream seems counter-productive. I'm taking pills to suppress every gland in my entire body from producing estrogen and now, I'll slather it on myself? Although estrogen would likely help, its use in many breast cancer patients is somewhat controversial within the medical community and really, when I think about it, how does it make ANY sense to even consider using estrogen, especially when there is a better way.

Mona Lisa Touch is poised to resolve that problem. Read more on their website and come back here in a couple of weeks for a post treatment two update!

My second date with the doc and the laser was on November 28th. My next post about Mona Lisa Touch may get Twenty Shades of Grey-ish.

One more treatment scheduled in January... after which, I'm guessing we may leapfrog well beyond Fifty Shades. Just thinking out loud here...

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FIFTY YEARS AGO.

2016-11-28T07:41:00.000-05:00

Another Rerun for Lung Cancer Awareness Month. My first brush with death, fitting that I close out LCAM with this post about my beloved grandfather.

This is really an expression of love: of family, of friends and of all of those whose lives have somehow intersected with mine. My life is enriched by every relationship, and I am me, this person, because of all of those who are now a part of me.

Some relationships are or have been purely filled with joy, some tainted with deep sorrow and others have left me me with wistful feelings of what might have been.... indeed, what should have been. My grandfather fits into all three categories and he was only in my life for a short time. His legacy and the memories have lived on in the stories and the photographs and especially those old movies. Despite having no sound, the images tell such wonderful and rich stories.

It is fitting that I close out my month of lung cancer awareness with this post. I was a young child, this was the first time I experienced the death of someone who meant so much to me, I never heard the word cancer before this and so, let's see what we can do to make meaningful difference over the next year so LCAM17 has a completely different appearance and feel. I'm all in.

From 2013:

I think it had to have been the first time I heard the word cancer. Over the course of the years that followed, I remember hearing things like, "Six months.... the operation was over quickly, as soon as the doctor saw what was going on, they closed him up and gave him six months."

My nana was a widow for FORTY years. My grandfather was larger than life. He was 55 years old when he died. I was a child. A heartbroken child. Not only was it the first time I heard the word cancer, it was the first time I was touched by death. It was November 28, 1966. Lung cancer. That, if I'm counting correctly, means that today, in 2016, is the 50th anniversary of his death.

It would be just two months later that my mom's dad would die. Also cancer. His was liver cancer if I'm not mistaken. Decades of no progress where it really counts despite the way the statistics are presented..... Because lung cancer is so stigmatized, that has become a key focus in my life but really, we need more big success stories, across many cancer types and subtypes.

My focus is on one grandfather because the anniversary of his death happens to be the same day as Thanksgiving (it was when this originally posted a few years ago). Coinciding with a holiday, it has given me reason to pause and reflect. Like my dad, he is missed at every occasion, every Sunday gathering and pretty much every day. Today, as I make the last preparations to celebrate a quiet holiday with five of us at the table, I pause to remember all of those who are no longer here. I will gaze at the flickering candle flames and send love and light to all who have come to mean so much to me.

Thank you for being a part of my life, for allowing me into yours and for sharing the path with me.

We never know where we will be from one holiday to the next and I can tell you that much has happened since last year. Some things I've shared openly, the good, the great and the heartbreaks, too. Others I've kept close to my heart. They are either too painful to share, or they are not appropriate to share because the stories are not mine to tell.

I'm grateful for the gifts of love and support I've received by simply typing words on a screen and sending them out into the unknown. You, whether in the blog world or in the twitterverse, have held me up at times you may not have known I needed to be held up. I've shed many tears over the love you've so generously showered upon me and I've laughed aloud on several occasions at the silliness we have shared.

Yes, I am grateful..... in ways I can't even begin to describe.

Signing off until next week.......

With all my love,

Anne_Marie

I swiped this photograph from my mom many years ago. It was taken in the yard of my childhood home. My dad was younger than my kids and my grandfather was younger than me. I know they would both be filled with pride at the way their family has grown.

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DANNY, YES, I MISS YOU STILL

2016-11-23T09:04:00.000-05:00

My memories as I posted them shortly after Danny's death in 2014.

Every life has a story and this life is no different.

Danny is someone who was very dear to me. His ashes, as I understand it, have been spread over the graves of his mom and dad. That was his wish. He planned each detail.

Beyond being someone who was so very dear to me, going back many decades, Danny was a man whose smile could like a room. His heart was huge.

Danny and I were inseparable after high school for a bunch of years. We lost touch for many years at a time with an occasional phone call here and there.

Earlier this year, I found out he was diagnosed with lung cancer. I called him to say hi, to let him know I was thinking about him. He gave me the details. He had shingles. Bad. For whatever reason, they did a CT and saw this thing on his lung.

When I spoke to him in March, he had completed chemo. I recall him saying that it really knocked him on his ass. He told me the oncologist pushed a very strong regimen because he was in great shape and in that oxymoronic fashion, he was very healthy. Except for that cancer shit.

I spoke to him again in May. This time, he called me just to say hi. It was May 18th. The date held sentimental value to us and he mentioned during that call how he never forgot that and how each year, he would remember our friendship and how each year, he would think about calling, but he never did. This year, less than four months ago, he decided he was going to call. We strolled down memory lane together. He sounded great, he was feeling great. Cancer was a blip, he fully rebounded from the chemo and life was good.

Except, apparently, it wasn't. I have no reason to think he knew something was wrong when we spoke. I can only surmise the cancer returned with a vengeance. A couple of weeks ago, I got word that he wasn't well. In fact, I learned, "it doesn't look good." I had every intention of calling him but each day, every day brought new challenges in my own life. I never made the call and now, it's too late.

Danny died on September 3rd in a hospice facility in Florida, near the town where he had been living for the past few years. His former wife, an MS patient, was at his side the entire day. Five minutes after she left, he took his last breath.

This is the essence of who he was. Danny was married for a short time. Married life was not for him and although they divorced, they remained best friends. When she was diagnosed with multiple sclerosis, well after their divorce, Danny made it his business to care for her. When her condition deteriorated to the point where she would need care beyond what he could do in his home, when she was no longer able to live alone, he arranged for her to be moved to a nursing home. When he relocated to Florida, he arranged for her to be moved from NY.

It wasn't near his home, but rather than settle on something less than, he had her put on a waiting list at a facility that was close to his home. He would not accept anything short of the best possible care and he spent every weekend visiting with her, driving quite a distance but never missing even one weekend. Until the shingles thing.... and then the cancer thing....

My heart is broken. It has taken me more than three months to put my feelings and thoughts on paper. I started writing this shortly after his death. The hurt, the emotions, the anger over what I feel is senseless kept me from putting pen to paper, to fully capture the man, the friend and the gentle soul with the big heart. I can't pick up the phone to check on him. I won't hear his voice again.

Lung Cancer. It kills and it kills and it kills some more. My friends who work so diligently to promote awareness of this disease, the stigma attached to it and the lack of funding for research to improve outcomes, do so because this should not be happening. Even with earlier diagnoses, the outcomes are not nearly where they should be. My beloved grandfather was 55 when he died. I was ten years old.

Danny was in his 50's too. He had a LOT of life left.

Instead, he was stolen from those who loved him.

Today, I cry. And today, I remain aligned with my friends who advocate on behalf of that patient population.

And today, in 2017, just before Thanksgiving, I am grateful for my memories and for the friendship I will forever cherish.

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HEATHER VON ST JAMES: TEN YEARS POST DIAGNOSIS OF MESOTHELIOMA

2016-11-21T08:01:00.000-05:00

RERUN for LCAM16

Eleven months ago, I received an email. It was from a husband, a daddy and suddenly a caregiver to his wife. Cameron Von St James reached out to me and I hoped to share his story, Heather's story on this blog.

We first connected right before Sandy left me (and the entire NY area) with a giant mess on my hands. Then, we reconnected as the holidays approached and I was preparing to take my sister, and then, my mom, for biopsies. When we next connected, I was sharing the details of my mom's diagnosis of metastatic disease. There was always another "thing."

Maybe that's the way it was supposed to happen. As it turns out, Cameron contacted me a few weeks ago. TODAY is Mesothelioma Awareness Day. I was vehement about awareness and how that ship has sailed.

And yet...... Here is a perfect example of a need to raise awareness. Get people talking. And educate. Awareness without education isn't effective. Now you are aware. Learn about Heather and how she empowered herself. Share with the lung cancer community at large and today, especially, on behalf of those diagnosed with mesothelioma.

Today's goal? Helping to share the voices of those Dying to Be Heard. Please do click and see why that goal is set at raising 7200 voices in solidarity.

We need to stand shoulder to shoulder in support of every form of cancer education. Because yes, all cancer is NOT pink. Can you help share this message? Share from Heather's link, or share this blog across as many channels as you see fit.

And please, do listen to Heather, beautiful Heather, in her own words:

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THIS WAS TOO YOUNG

2016-11-17T08:00:00.000-05:00

Alexandria: Stolen August 2012. Posted originally in 2013

I don't keep up on awareness months. Personally, I'd prefer a more unified approach to the many diseases that are under the cancer umbrella. After seeing all of the attention in October and the fact that any mention of the word ribbon or the sight of anything pink means just one thing: Breast Cancer I can't help but compare.

It's lung cancer awareness month. November. I read a few other things that we are supposed to be aware of this month but for starters, shouldn't we be aware year round. People don't only get cancer or die of their cancer in the assigned month. It's a daily event.

However, there is a need to bridge the gap on behalf of the lung cancer patients. Yes, those with other cancers are stigmatized and may be embarrassed to discuss the nature of their disease. But, there is no other cancer for which blame is so easily assessed and judgment is immediately passed.

Irrespective of how or why it anyone gets a disease, this is disgraceful. It's not about the cigarettes, it's about our lungs. No one shared that with a more powerful voice than Lauren Terrazzano. If you don't know who Lauren is, you should click that link and learn more about her.

I read this story with great sadness. Alexandria Misnik-Gasior was diagnosed with Stage IV lung cancer. This is normally the situation. Late Diagnosis. When hers was diagnosed, according to the story, it was throughout her entire body.

Her one request? No mention of the words "Lung Cancer" should be included in her obituary. The stigma. She didn't want the stigma to be attached to her life, her legacy and follow her into her grave at the tender age of 24.

(If the link doesn't work, try googling her name and the name of the journalist who wrote the story for the Philly Burbs, J.D. Millane.)

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HAPPY BIRTHDAY TO MY GRANDMOTHER

2016-11-13T14:00:00.000-05:00

RERUN from a prior post.

Today is my nana's birthday. More accurately, it would have been her birthday. She died in March of 2006. It was just weeks before I stepped into biopsy hell. I am glad she wasn't here for that.

She had a very colorful way of saying things, I can guarantee she would have been mighty angry if she were still alive. If I sit quietly, I can hear her voice and I can pretty much hear every curse known to mankind. She would have used them all, and she would have made up a few new ones in the process. Mom knows I'm right. My two aunts know, too. So, for that matter, does anyone who ever met my nana...

My grandmother died a few months after her 94th birthday. She lived a long and full life. And she smoked. I remember her smoking when she was in the hospital being treated for pneumonia. Obviously, this was many years ago when hospitals had smoking lounges but she was sneaking the cigarettes from her hospital bed.

I'm not advocating any of this, I'm just sharing a bit about her life. And, including a little reminder: There was a point when smoking was not known to be harmful. Or, it was known but it wasn't known by the general public. Until the surgeon general came forward.

She was a rebel. She was fierce. And she was protective of all of us.

At 94 years old, natural causes is the only proper thing to say but the truth is:

My nana had lung cancer.

It was found on an imaging test when she was 91 years old. She was not treated for the cancer and in fact, she never KNEW she had cancer. My dad was adamant and fought with any and every doctor.

"She's sharp as a tack and she has a right to know. We don't withhold information. We are duty bound to tell the patient." The doctors would be right but my dad was protective of my grandmother and he was having none of it. Why should she live in fear of that word? Of that diagnosis?

She did not suffer in the end, and pretty much, she smoked until the day she got into her bed where she died a couple of days later.

My heart was shattered and I'll never forget the words of the priest at her funeral. "Ninety four years is still not enough." And yes, he was right. It wasn't enough time, there were still more memories to be made. I miss her.

November 10, 2001: At her 90th Birthday celebration, dancing with my dad.

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NO BETTER DAY THAN TODAY TO TALK ABOUT PTSD

2016-11-11T08:00:00.000-05:00

Today I realize, cancer causes plenty of issues well beyond the fallout of the treatment side effects. I have come to learn that PTSD is definitely one of them.

Today, I would like to pause to remember all of those who have served to protect our freedom and today, I would like to acknowledge the suffering of those whose lived are affected by PTSD.

All too often, the result of a traumatic situation is post traumatic stress. While this is about the stresses of life and coping after cancer, about possible short circuiting in my brain, in 2013, I wrote this in response to something that was a source of even more trauma.
From 2013, for those who may be struggling today, I'm by your side. I'm in a bit of a struggle, too. I will say, I've somehow managed to come far. The stress in my life is back at 2013 levels but I will say, I am dealing with it far better today than I was three years ago. That means I've learned and listened and grown.

I hope, to those who are struggling in this moment and can't see beyond the moment, can read this and feel a bit of support.

Previously posted 2013:

I pride myself on trying to be objective. I will listen to others. Everyone gets the benefit of the doubt. It's the way I choose to live my life. Because I know this intellectually, this may be one of the most difficult things to share.

I am on an emotional collision course and I can't, not matter how hard I've tried, slow this train down and put it back on the right track.

A few weeks ago, I said something about "impulse control" in an string of email messages when it dawned on me, "this is not a joke." I began to do some serious soul searching. This is not to say I haven't always been able to hold my own in an argument. Yes, I have that hot blooded Italian temperament.

I do love the sound of glass hitting a tile floor. It stops everything and the act of cleaning up the glass is therapeutic. I know. Weird. It doesn't happen often, that glass breaking stuff, and when it does, I have the presence of mind to toss a cheap water glass. When I run low on glasses, I make sure the next set is even cheaper. To put it in perspective, the deliberate breaking of glass only happens maybe twice a year.

Impulse control? More accurately, a lack of impulse control, a daily occurrence. Just like the realization that the work piling up around me was not due to an increase in my work load but rather, my inability to keep up at the same level I could before cancer fallout, I have taken a personal inventory.

I know I am my own worst enemy. I know, too, on every level that allowing myself to be distracted from one task to the next without completing a single thing is, at its core, a loss of control over my concentration. I give in to the distractions. I act on impulse. I don't think.

The only one being stressed out or damaged by this lack of discipline or impulse control or however I want to frame the language, is me. My work, my obligations, my bills, my exercise time, my writing time, my appointments when I'm rushing out the door because I could not force myself to move ten minutes sooner.... it has only affected me.

Until now. I've become intolerant and I know it's me. I was never intolerant. Fly off the handle? Sure. But intolerant of any and every little thing? That's not me. And yet, suddenly, or perhaps gradually and now it has gotten so bad, it IS ME.

I'm on a path of destruction and it's no longer self-destruction. I've lost my patience with everyone. No matter what those closest to me try to do, no matter how much I appreciate what is being done for my benefit, my happiness, my comfort, my enjoyment, I can go from zero to sixty in a millisecond. Over nothing. Literally. Nothing.

I have no idea what to do to remedy this mess. I practice yoga, I exercise, I meditate, I get 7-8 hours of sleep each night (yes, even on those nights when I'm on west coast time), I do my best to maintain a decent diet. I have medication to use as needed and professionals to turn to for guidance. But none of this helps one iota when I lose control.

I hear myself in my head.

"Stop."

"Breathe."

"Overreaction."

"Inappropriate response."

"Irrational."

And. I Do It Anyway.

I wish I could convey how much this is hurting me. I'm floating above myself looking down as I behave in ways I don't recognize. At the expense of others. I defend my actions with a self-righteous attitude. As if I have good reasons for acting in ways that are so hurtful and so harmful.

I apologize.

And within 72 hours, another eruption.

They are happening more frequently. The triggers are stupid. Sometimes there is no trigger at all. It's just me, being a bitch. For no reason.

I don't like this person one bit.

Is it anxiety? Depression? Fear? PTSD? Damage to my brain which, of course, I researched before I began typing. Except for depression, my guess is that it's a combination of all of the above.

What I fear most? I have taken every possible step to address anxiety, fear and PTSD.

That leaves me with one last possibility. I hope that recognition of the problem, if indeed it is something that has short circuited, will enable me to change what I have come to despise.

Acceptance that I can't change what may have happened to my brain will, I hope, enable me to take back the reigns and regain control. The act of recognition and acceptance is where I am going to try my very best to focus my energy. I simply must learn to stay at least a half a step ahead of my destructive acts of impulsivity.

Frankly, my behavior is, and has been for quite some time, unacceptable. Behaviors can be relearned or unlearned or adjusted. I'll simply have to find a different part of my brain to use. And I will. There's no other option.

Like I've already said, breast cancer is not the great success story it's hyped up to be. It's simply the one that's been marketed the best. And the marketing tactics have hidden much and done quite a disservice to those who struggle with things every single day, on one level or another. Yes, there are far worse levels, but I'm not fond of the levels I've reached in recent months.

Cancer has already stolen so much. It's not going to steal my soul, too.

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LAUREN TERRAZZANO @NEWSDAY COLUMNIST. NOW GONE ALMOST TEN YEARS. #LCAM

2016-11-09T10:00:00.000-05:00

This post originally appeared in January of 2013. Between then and today, I have developed an email relationship with Lauren's dad. He calls himself Helicopter Dad and although our communications are infrequent, each time we chat, I want to reach through the screen and give him a giant hug. Simultaneously, I want to scream into the universe. WHY????????

I wish I had known Lauren as a friend and not just someone via the print of my local newspaper.

Today, I remember Lauren. Who? Lauren Terrazzano. She was a journalist. She wrote a column in Newsday which is a Long Island paper. Lauren had lung cancer. She was treated at Memorial Sloan Kettering. She is how I found out about Kites for a Cure. Her writing transcends lung cancer. She wrote about the stigma but she also penned articles about the stupid things people say and Lance and Elizabeth and the wig guy whose name I was given when I learned I would need chemo and her husband's devotion as a caregiver and every single column is an excellent read.

I was in and out of every building at Memorial Sloan Kettering from July 18, 2006 when I had my surgical biopsy in Manhattan through October of 2007 when my reconstruction was finally complete. Lauren's columns began on September 5, 2006. She died on May 16th, 2007. I promise you will not be sorry if you take the weekend and read every single one of these columns.

This is an article written about Lauren in USA Today on April 22 shortly before her death. An obituary appeared in the Boston Globe.

I think her writing had such a tremendous impact on me because I was LIVING what she was writing and I was living it in real time. I could relate. It didn't matter that I had an early stage breast cancer and Lauren had a recurrent lung cancer. Cancer is cancer. Except we know for many, it's not. Lung cancer.... definitely not the good cancer and definitely the "you did this to yourself" cancer.

I cried the morning of May 17, 2007 when I picked up Newsday and brought it inside. And I saved the paper. Lauren humanizes lung cancer. I think of her often. I think of her as my friend even though I have no connection to her whatsoever. I just learned her father wrote a book which was released in October. It's downloading to my iPad as I type. Life, With Cancer

THIS is the face of lung cancer. This is a voice I miss and one that was silenced far too soon. This is why we MUST join forces so the day DOES come when there is #NoStigma.

Lauren Terrazzano Articles by newsday

If for some reason the articles she wrote don't appear here, they are viewable in my original post. You won't be sorry you clicked to read them. Her voice is strong and speaks to every cancer type. Like it? Share it!