Lisa Bonchek Adams

“Find a bit of beauty in the world today.
Share it.  If you can’t find it, create it.
Some days this may be hard to do.
Persevere.” 

7/29/69 – 3/6/15

The Visitation was held on Sunday, March 15, 2015 in Darien, Connecticut at the Lawrence Funeral Home.  The parlor was decorated with photos of flowers from Lisa’s garden and bouquets from friends and neighbors.

The Memorial Service took place on Monday, March 16, 2015 at the First Congregational Church in Darien.  The program included eulogies and performances in celebration and memory of Lisa.

The following are videos and transcripts of these remembrances:

• Welcoming Remarks (Clarke Adams) & Ave Maria
  (Daniel Hague and John Hunt)
• A Reflection on the Life of Lisa Bonchek Adams (Clarke Adams)
• Other Remembrances:
     Mark Bonchek
     Justine Stewart
     Mardi Durkin
     Brenda Whittaker
     Paige Adams 
• “Six Minutes”: Remembrance and Performance (Doug Allen)
• Final Thoughts (Drs. Larry and Rita Bonchek)

The Reception followed the Memorial Service and was held at the Country Club of Darien.  This video, with some of Lisa’s favorite photos and songs, was shown at the reception and posted online for those participating in a virtual service.  

The post Memorial Service appeared first on Lisa Bonchek Adams.

Lisa died at home around 9:45 pm on Friday, March 06, 2015, surrounded by her entire family.

Lisa was cared for to the end by her beloved Dr. Chau Dang of Memorial Sloan Kettering Cancer Center. Lisa specifically asked that anyone who wishes to honor her memory do so with a contribution to her fund for breast cancer research at MSKCC.

The Adams and Bonchek families send a heartfelt thank you to all for your love and support. We know that Lisa will always be a part of your lives, as she will be a part of ours.

Services consistent with her wishes will be arranged and announced here.

In keeping with Lisa’s wishes, this web site will be maintained as a resource of Lisa’s writings about metastatic breast cancer, grief and loss, life, and family.

“Find a bit of beauty in the world today. Share it. If you can’t find it, create it. Some days this may be hard to do. Persevere.”

The post In Memorium – March 6, 2015 appeared first on Lisa Bonchek Adams.

A week ago 5.5 liters were removed. This process then was going to need to happen again after only ten days. The fluid is coming from my liver because of the cancer.

I was admitted to hospital Wednesday and had a Tenckoff catheter put in. I was not a candidate for the Denver shunt because my platelets run too low and an internal shunt would be dangerous.

They removed another 5 liters of fluid at surgery. Now I have a catheter that allows me to drain myself at home. But, so much fluid removal in short period messes with electrolytes, BP, etc. and makes you feel rotten until you get equilibrium.

Still cannot walk — no change predicted in short order. We are installing ramps, bought wheelchair, etc.

For now that is all I have energy to update but should give you sense of where things are.

Xo, Lisa

The post Update 3/1/2015 appeared first on Lisa Bonchek Adams.

Most of the last three weeks since I last wrote have been dealing still with swelling and blood count issues from radiation and from the extensive disease in my liver that we are working on with the radiation and with chemo. I’ve needed numerous transfusions of red cells for anemia and quite a few for platelets which have really come under attack. We have been taking a break from the Epirubicin and I got a dose of Faslodex (I had it last year as well in a clinical trial with a trial drug, this month I am using it with a daily pill, Letrozole). Rather than being cytotoxic chemos (traditional “cell-killers”) these are anti hormonal agents. We are just trying to let my body recover now for a few weeks.

Last week my abdomen grew and grew with fluid from the liver and overall inflammation. By the end of the week I had an abdomen the size I was when I was ready to give birth. The skin was painfully stretched. We needed to intervene. I went to urgent care for evaluation for a paracentesis (draining/”tap” of fluid). My platelets were too low. They transfused and I just made the cutoff. The process is pretty simple: visualize if the pocket of fluid is drainable (tiny pockets would not be) via ultrasound.

Three needles of increasing gauge are inserted to numb through to the pocket. A catheter is inserted and attached to a drainage bottle that has a bit of vacuum to draw out the fluid. Two and one half liters later we were done. It is a huge amount to see. I did have soreness at the site and discomfort from such a lot of fluid removal after. But this is a very common procedure with metastases to the liver (please, please remember: breast cancer that metastasizes to the liver is not liver cancer. Mets to the brain are not brain cancer. They are breast cancer cells that have moved in the body. There can be/are big differences in terms of prognosis, treatment, chemotherapy agents, etc).

Some patients only need a few of these abdominal taps. Some need them every few weeks depending on how chemo, etc. are working. Sometimes a drain is actually placed to allow a constant ability to remove fluid.

If you were following me last year you know I had a drain placed in my lung while in the hospital that accomplished something similar. I was fortunate to only need that one for a few weeks (I had already had a one-time tap on my left lung called a thoracentesis). For now there are no plans for a drain or other more serious interventions in my abdomen. Now that my potassium levels are holding steady we are using diuretics to manage the issue.

We are working on the plan for next week, it is likely that I will be going back to a chemotherapy called Xeloda (these are pills taken daily) for a bit because it is gentler on blood counts. I’ll update when we have a decision on that.

I’m weak, still unable to drive, or do much more than walk than to the bathroom or a car that is picking me up. I’ve had to adjust some things at home including bathroom rails and so on. Safety is most important and especially with very low platelets falls and any bleeding or injury risk is a serious concern.

I’m sure I’ve forgotten something (or things) but I do want to get this out today. I see snow out the window but I’m still focused on Spring. These hydrangeas in my room this week reminded me March is not far off.

Thank you to those near and far for all different kinds of support given this month with an extra shout-out to my wonderful team at Sloan-Kettering. If any of my doctors, nurses, or support staff there are reading this: you help make these tough days better. I value your care always.

The post Update 2/12/2015 appeared first on Lisa Bonchek Adams.

In the last few weeks my problem became swelling (edema) from inflammation from the liver radiation. My abdomen was shockingly distended and that was causing me trouble with discomfort and moving around.

I have had fatigue but it hasn’t been the sleeping-all-day form that I was warned might happen with the brain radiation. Fatigue encompasses more than just “tiredness.” For me the fatigue has been more weighted on weakness. I have had a lot of trouble walking and doing steps. I’ve needed to use a wheelchair at SK for a few weeks now. That shouldn’t last much longer as I get stronger to walk distances again. But on the bad days I couldn’t get more than down to the car for my ride.

I started Epirubicin for my chemotherapy a few days after radiation finished in December. It is dosed based on liver function so the dose has been adjusted each week as we see how my liver is doing post-radiation. I was able to get three straight weekly doses. This current week has been my “off” week; my blood counts are low from three straight weeks of chemo (to be expected in anyone getting it) so a week off is always given for the body to hopefully make enough the replenishment cells of different types.

The magnesium and potassium as of this week are finally holding with home management and no IV supplementation. A helpful tip: the low sodium form of V8 has huge quantities of potassium. Most people think of OJ or a banana to supplement. Only 8 oz of it contain 900 mg of potassium. I drink a few a day, just make sure it is the low sodium version though.

I’ve now tapered totally off the very low steroid dose I had been on for months. Steroids can make your legs very weak if you take them for an extended period of time so it is good to be able to remove them from the equation.

I only needed to go to SK for one trip this week. Diuretics have helped with the edema, each day I see and adjust the dose. I do not have pain beyond what is caused by the fluid around the liver. I do not take any pain pills and haven’t needed them during radiation. I have not had any headaches or neurological issues yet from the brain radiation which is probably due to the fact that my lesions were so small and the low dose of steroids. I am still winning a bunch of my Words with Friends games too! The last time I was able to leave the house to go somewhere except to go to Sloan-Kettering was Thanksgiving. That boggles my mind.

I think this week has been a turning point. I am hopeful the major acute radiation effects are waning. No clue what lies ahead with the delayed ones but I don’t focus on that. For now I will be working on strength (after being basically bedridden for a month) and trying to get more function back. It is a process.

If all goes well I will start a new chemo cycle next week. Radiation effectiveness can’t be assessed immediately so we will do preliminary scans in a few weeks. (I finished on 12/19). Each day is different and I can’t predict how I will feel. But that seems to be the way life will be for me now. I long ago adjusted to that.

I am grateful for all of the support and concern shown over the last month from you, I understandably wasn’t able to return many messages. This past month was really about just getting through. The energy I did have was spent making sure the kids were able to maintain their usual schedules and we made it. Friends who have helped with rides and meals: thank you.

The poppy photo above is from my garden a few years ago… I’m already anxious for Spring to get here. xo

The post Update 1/17/2015 appeared first on Lisa Bonchek Adams.

I’ve finished two weeks of whole brain radiation (those two weeks had simultaneous radiation to my C2 vertebrae), and two weeks of liver radiation (one overlapping with brain, so all of this was 3 weeks of treatment). I have been overwhelmingly plagued with intense fatigue and other side effects (fatigue is the worst thing at the moment though).

I need to use a wheelchair when I go to Sloan-Kettering now. I’ve needed platelets and red cells once each in the last few weeks and have needed to be at Sloan for one half-day every weekday for the last month or so because my magnesium (despite daily infusions) remains critically low, which is a dangerous situation. My potassium has similarly started to be an issue as well. I get magnesium and potassium in addition to 1.5 to 2 liters of fluids as well each day because I have been having trouble staying hydrated with the radiation effects. Not enough energy here to go into why the magnesium is still an issue now.

Four days ago on Tuesday the 23rd, I began chemotherapy (4 days after finishing all of my radiation). We are starting a new drug called epirubicin which is an anthracycline just like the well-known adriamycin (it is also red like adriamycin).

So basically I’m spending a half day at MSK every weekday and resting (I’m basically bedridden right now) at home the rest of the time. I don’t leave the house except to go to MSK. I expect at least a few more weeks of this.

I’m thrilled that my family has gone away on vacation starting today and they will have a week to ski and be with cousins and grandparents and get a fun break while I recover here. I insisted that they go; it is so important for me to know that our kids and my husband can have some vacation time and get a break. It is not easy to be a family member/caretaker under these conditions so it gives me a lot of joy that they can have a change of scenery. I have a family member staying with me since I can’t be alone and so that will work out just fine in terms of appointments and help with my needs.

I get foggy quickly so I hope this post made sense!

Many thanks as always to those who support me daily with tweets, emails, rides to appointments, donations to my research fund, meals, etc. And to any MSKCC staff who are reading this: you know how much I adore you.

I am grateful that you all continue to join me here. Wishing you a happy and healthy new year if possible and we’ll keep on going into 2015 the best we can…

xo,

Lisa

The post Update 12/27/2014 appeared first on Lisa Bonchek Adams.

It is possible since we are only radiating the right lobe of the liver right now that we will later Y90 the left lobe if we can get some stability after radiation and chemo but that is to be determined. You always have to be willing to adjust to what the day brings and what the best new course of action is.

For now I have side effects of being wobbly, absolutely fatigued (unable to walk well or move), dehydrated, pain and nausea. It hasn’t gotten to the worst point it will and we are managing medications each day to deal with each days’s issues. My palliative care doctor and my medical oncologist as well as radiation oncologist are all monitoring me closely.

I have been at MSK for IV fluids and magnesium 4 days this week, radiation for five days this week, and tomorrow I will even then need to head down to NYC for platelets for clotting and red cells to combat my anemia. We need these numbers to be up so I can continue radiation and then get right into chemotherapy again.

I’m not functional for the most part and the days are very tough. But I know this is what needs to happen before I can get my strength back and the cancer under control. These are important weeks and months.

That’s all I have energy to report for right now, thank you for the support.

The post Update 12/11/2014 appeared first on Lisa Bonchek Adams.

The first thing I want to comment on is the death of my dear friend Ann Gregory. She died the day before Thanksgiving. Her obituary appears here. Some of you came to know Ann through Twitter or through my stories about her in person or through her comments here on the blog. If you did get to know her and chat with her on Twitter over the past few years, you were lucky.

Ann was the strongest person I know and had numerous diagnoses of cancer throughout her life including leukemia and squamous cell carcinoma. She was quite stoic and, like me, was always okay as long as there was a plan for what to do. We spent hours texting each other (often those hours could be in a single day, depending on which one of us was sick or well that day or what phase of treatment we were in), always supported each other, and she was always a valuable source of information for me. I have missed her so much in the week since she has died. We did not want to leave each other. Four days before she died she texted me to say her goodbye. I will never delete those text messages and I am so sad that I have to do all that I have to do without her. My heartfelt condolences go out to all of her family, especially her husband, Chris, and her legions of friends. Her blog appears here. I just can’t do her life and personality justice here right now, but there is a gaping hole in my life now, and Ann is the precise shape of that hole.

…………………………………………………..

Last Friday I did my mask-fitting and simulation. The mask-fitting takes about half an hour and is pretty unpleasant. The mask is molded to be skin tight on your face, to the point of leaving indentations when removed. It is rigid plastic, not flexible mesh. There are no eye holes or openings for your mouth… your chin is jammed up so tightly that you couldn’t open your mouth if you wanted to. I cannot speak at all when it’s on and attached. Obviously, this is vital to making sure the radiation is going exactly where you want it to go, and not where you don’t.

Even though the fitting and simulation take a while, each radiation session itself is quite short. After confirming the patient’s identity with name, birthdate, and a photo, you lay down on the table, they hand you a foam ring to hold on to across your chest so your arms are relaxed and easy to keep still, and a foam wedge is placed under your knees. Then the aforementioned mask is placed on and with some tugging and effort, attached firmly to the table you’re on. The photo gives an idea of what it’s like.

The technicians leave the room and the linear accelerator moves into place. The beam goes on and I can see even through my eyelids a very bright light with a bluish cast. It is only on for less than a minute and then it moves and does the same thing to the other side of my head. They say there is no smell to radiation but I always smell something. I have read that others do, too. I can’t describe exactly what the smell is. I’m working on figuring it out. I’m usually focusing on relaxing and not getting claustrophobic so I haven’t solved the mystery yet. It doesn’t quite smell like burning hair but maybe that is part of it. After the actual beams are done then the techs scurry back in right away and release the mask from its mooring. That’s it.

As I said in my last post, side effects don’t usually start for brain radiation until closer to the end of the 10 session series. So, next week I will see more of the fatigue and the start of hair loss. Memory loss takes a bit longer to occur. There are many things that might happen including headaches and nausea and confusion and blurry vision but those are not as common. I did not have any neurological symptoms before starting radiation so that is a good thing. I have some nausea and loss of appetite but that is primarily due to the liver situation. An inflamed liver causes pain, nausea, and so on.

I did my liver simulation for radiation yesterday. This is actually more complicated for the radiation oncologist to map out than the brain because part of my liver already received radiation when I had the radiation to my spine in January. For this reason, she needs to make sure it doesn’t get any additional radiation this time. None of the 13 or so tattoos (permanent ink dots placed by a needle under the skin to mark where the alignment should be for the laser beams for radiation) that I had from the spine and pelvic radiation in January were in the correct spots for the liver so I got about 6 more of those. The radiation oncologist will focus on the right lobe of the liver, but even that is tricky with the kidney and bowel in range.

They will work to map it this week and I will start liver radiation next Monday. That means this week (12/1-5) will be brain only, then one week (12/8-12) of both brain and liver, then one week (12/15-19) of liver only. Then I will wait a few days and begin chemotherapy again. These are hard days ahead. Side effects will be kicking in right as I go back to chemo. Christmas week will be the peak for all of this to hit the fan.

I’m continuing to get IV fluids 2-3 times a week and am also getting magnesium infusions because the most recent chemo continues to cause my magnesium level to stay far too low. Even though I am not getting chemo right now (in this case, chemo and radiation can’t be given together even though with some cancers they are) I am still having lingering effects from the last round of Cisplatin. The magnesium infusions add about 8 hours a week to time I need to be at MSK (Memorial Sloan-Kettering).

There really isn’t time to do anything else besides be there and rest at home. I’ll be there every weekday for the next few weeks. I’m managing okay and know it’s going to get far worse before it (hopefully) gets better.

I think this should give everyone a pretty good timeline of what I’ll be doing in the next few weeks so that if I can’t update much, you’ll still know. I know people have questions and I will do my best to answer them, it might just take me longer than usual.

Thanks for all of the support, as always.

The post Update 12/3/2014 appeared first on Lisa Bonchek Adams.

Whole brain radiation will radiate all of my brain tissue, healthy and malignant. It is usually given in a series of 10-15 sessions, every weekday. It has side effects both short term and long term. In addition there is a claustrophobia-inducing session of mask-fitting where a mold of the face and head must be made for the patient to wear  during radiation treatments to immobilize them. Here are some photos that one woman made of her WBR process.

I am meeting with the radiation team on Tuesday to get all of the details and do the scheduling. I haven’t met with them yet. I believe the goal is to start next week. I do not yet know what this means for the radiation procedures I had scheduled for my liver. I will also be continuing with chemo as much as is possible during this time. The most serious side effect will be fatigue. As in: sleep 20 or more hours a day fatigue. Can’t get out of bed fatigue. So I will need to make arrangements to get more help here at home to help with the kids and with driving.

For now that’s all I’m going to report because I want to see what the team says about my particular case and let everyone know the plan for me. It’s obviously not the news I was hoping for. But as always I will do what needs to be done to try to manage it.

The post Update 11/24/2014 appeared first on Lisa Bonchek Adams.

The past week was already one of the most challenging I’ve had this year: my first infusion last week of a triple dose of Cisplatin had me down for the count while I was also digesting the news of the growing liver metastases and what needs to be done to try to reduce those. This week I had a PET scan and CT angiogram of the liver scheduled to assist in my pre-surgical requirements for the Y90 Yttrium radioembolization I talked about in my latest update (the Y90 process is also called SIRT: selective internal radiation therapy).

As a result of the PET scan we got some additional information and what we got was not good. Obviously that isn’t a surprise given that my bloodwork had already told us the prior chemos had stopped working and the cancer has been progressing. The PET confirmed that my liver is an area of increasing trouble with tumors multiplying and growing in size. Not surprising. Also as we suspected, the fluid around my heart appears to be malignant. Then there were surprises: apparently at least one malignant lesion in my brain and new cancerous areas throughout my skull and jaw.

The PET is not a good way to identify exact size and precise location of specific tumors, however. Therefore, on Friday I will need a brain MRI to get good imaging and see exactly what is going on. Then we will see what needs attention, what is watch and wait. Not all brain lesions should be radiated with gamma knife surgery immediately; it is a risk/benefit assessment when you’re shooting radiation into the brain. Obviously, though, gamma knife surgery is a treatment that will be considered once we have details on what we are looking at.

Skull metastases, despite sounding scary, are just bony mets. This is what systemic chemotherapies (treatments that are given orally or through IV that work throughout the whole body) are designed to work on. Brain lesions often need different therapy because many/most drugs do not cross the blood/brain barrier (or do so in an indirect or imperfect way) and so are not effective in counteracting metastases to the brain. Metastases to the brain often require a change in therapy to address this issue.

For now we proceed with the liver plan because that is a local therapy designed to work on just that issue. It needs attention now and isn’t changed (yet) by this new information. As for the rest, I will just have to see what the brain scan shows and go from there. It will be a long week of tests and waiting. Sometimes I wonder how I walk around knowing what is in me and what it is doing to me and still manage to get through the day. I have seen the roller coaster of what this disease does. Some things that sound terrifying end up being able to be managed.

We will be scheduling chemo intermixed with my liver procedures (day before, or maybe a few days after), adjusting the chemo doses to lower ones so that there is time for my blood counts to rise in the time needed. It will be an art and science to balance. By then we will know if the Cisplatin is working. I can only hope that it is and that it will. We have a few choices lined up for if it isn’t.

While all of this goes on I still search for that laugh, I still appreciate the small things.

Most people know my “bit of beauty” tweet by now (“Find a bit of beauty in the world today. Share it. If you can’t find it, create it. Some days this may be hard to do. Persevere.”). Judy Clement Wall has made this into notecards and a print and is donating all funds from sales through 2014 to my research fund at Sloan-Kettering. If interested, go here to her Etsy shop. I know that this is the quote many people will remember me for most. But I have another tweet I like to send out. Some days this one just feels right. It is:

Make the most of this day. Whatever that means to you, whatever you can do, no matter how small it seems.

For now, and again, I say: Onward.

(A housekeeping note: for anyone who has signed up to receive these posts by email but sees that posts aren’t arriving: you must confirm your subscription by clicking the verification option in the first email you will receive. If you have been wondering why you aren’t getting the emails, please re-sign up from the home page at www.lisabadams.com, upper right corner, and make sure to verify. There are loads of unverified requests and only you can do this part!)

The post Update 11/18/2014 appeared first on Lisa Bonchek Adams.