Surviving Beautifully

Recovery and transition

2016-04-11T04:34:00.001-05:00

The liver surgery was a success! Dr. Gogel is confident that he was able to do enough ablation therapy to get clean margins around the (about) 4 cm Timothy was there.

I did spend more than one night in the hospital. I was actually there until Tuesday rather than going home the preceding Saturday. Why the delay? Pain control. With the pain medication I was taking before surgery because of my back pain it was difficult to provide high enough doses of medicine to knock out the surgical pain. What a challenge!

In fact, Dr G sent me home with presciptions that had me taking a lower dose of medicine after surgery than before. Needless to say, I had to create a pain management plan based on pre-surgery doses and post surgery expectations.

It was frustrating as I felt guilty for being on the medicine that my doctors had prescribed and that I needed to control the pain.

This guilt pushed me to step down my pain medicine so I could get to the dosing expectations of my surgeon.

It ended up leading to a slew of problems so dramatic we had to make some dramatic changes in life including admitting I couldn't manage the taxing responsibilities of a single parent alone any more. And, from the maternal instinct to protect my children, we have chosen to live with my parents for right now. I could just see the stress of worrying about Mom and my health plus fearfully waiting for the next medical challenge to hit. I also had children who deserved to join in extra curricular activities being stifled because I didn't know from day to day if I would be well enough to drive them from activities home. Although we had wonderful friends willing to help, after a lot of tearful prayers the answer came that we needed full-time help to keep our family functioning as I want it to function and to teach the girls how a loving home should function. I also need help to continue to teach them homemaking skills and to allow them to develop their talents and to excel in the goals they have set.

No one tells you how hard parenting will be - all the worry about if you are doing right and giving what they need for growing and success in life.

I am humbled and grateful for family who used their vacation time to come to Texas and care for me when I was so sick. What a beautiful and Christlike charity to think of your extended family members needs and to be an answer to prayer.

I am humbled by so much service - cleaning and preparing my home to be vacant for an extended time, new car tires, vacation time and plane tickets many purchased in order to make the process as easy on my body as possible. So many generously gave their time and financed travel to help me. There is no end to the goodness my church family also offered. And, how beautiful and humbling to be invited to bring my family into so many others home so I could have the needed support while I go through a season of physical and emotional weakness.

I look forward to the day I am strong again so I can become the one offering the service, support and opening my home to those in need.

I love my Savior, Jesus Christ, for his atoning sacrifice that all my burdens can be laid at His feet and I don't have to carry them.

Ablation Surgery for Liver Tumor

2016-03-11T07:06:00.001-06:00

Today is the day, finally getting surgery on my liver. I know it sounds weird to be excited about it, but I am in the sense that I have a lot of hope for how I will feel after the surgery and recovery.
Recently we have been completely focused on the mets in my spine and liver. I have been told these are two parts of the body that chemo has a more difficult time treating. That makes sense as the spine is encased and protected from things crossing that barrier to protect the brain, you may remember from health science that the spinal column and fluid are directly linked to the base of your skull. And, the liver is cleaning out the junk from your body, and chemo is junk - so it probably doesn't get a chance to do it's work there because the liver wants to sweep it up and get it out.
Getting this surgery leaves me with hope that we will have gained some control over two spots that were growing out of control and could have become very threatening to my health. I also feel nervous about tumors in my liver. That sounds like something that happens when someone doesn't have much left to win in the battle. By getting these areas under control I feel better positioned for a miracle - being cured of this nasty cancer. And, if God isn't ready to do that, I am hoping to treat one of the major causes of the complete physical exhaustion I have felt for months. I have been on disability from work since October, but can't get to where I feel like I have been on break and resting. I am just completely worn down. Something as simple as standing near the chair and watching my daughters get their braces adjusted completely took the strength to finish the doctors appointments we had yesterday. When was the last time you got tired from standing up for 10 minutes?
Today I have been awake for hours, just nervous jitters before a big day. And, in addition to laundry, perusing medical bills, and cleaning the bathroom floor I have been searching the internet for things like "does the liver have nerves/ feel pain", "recover/liver ablation", "blog about liver ablation", or any thing written by a patient about this treatment. I haven't had much luck. (frowny face) So, I only know what the doctors say - that recovery is about 2-4 weeks.
And, so I will march forward, praying for my children to have the strength to endure mom's problems a little longer. And, I will be putting my faith in the Lord and hoping this treatment will be a huge advantage in the treatment of my cancer and in regaining some of my strength and stamina.

Numbing pain, hospital stay

2016-01-18T17:34:00.001-06:00

I am so blessed by the actions and service of others. There are too many services for me to list, but a lot of people have joined a circle of select friends after spending hours holding my hand while I cried, had snot drip down my nose and me using my shirt as tissue, walking behind me when I wore a hospital gown (lol), etc.

I am doing better. I am in the hospital, have been since last Thursday. I have been in extreme pain for many days and had that same level of pain most of the time for the last month.

Today results from my PET/CT scan came back. I have been praying my results would direct my doctors down a clear treatment path. As Dr Beshay discussed them with me he said they were very clear. He said my complaints, the EMG and this test all pointed to the spine, specifically L3/4.

The plan:

1) get me out of the hospital and home

2) do Cyberknife Radiation. This is a more exact form of radiation so a much higher dose can be used.

-- I also talked to Dr J today. There is some more activity in the liver, so following my spine we will have the surgery to address that problem. And we will resume chemo after these two treatments are complete--

3) Surgery on the liver to stop the cancer there

4) resume chemo

Prayers are still needed. Please pray that (#1) I will be clear in explaining my pain to the doctors so I can get a pain management to use at home that will be successful. (#2) the doctors will continue to be inspired in their treatment plans for me (#3) my continued optimism and faith that I will one day be healed completely.

Thanks for all your love.

Huge update

2015-12-03T11:51:00.001-06:00

It has been about a month since my last update, and it has been very busy on the cancer front.

I got some radiation on my right hip where the MRI showed tumor in the bone marrow. The relief wasn't like last time, last time it was almost instant, it made a difference within days and lasted for months. This time the pain didn't go away quickly and it was probably the pain killers and steroids that controlled out for the days when I didn't have pain.

However, I am going to take this as a good sign about the tumor. I am going to believe that this particular tumor isn't in too bad of shape since radiation didn't solve the pain. So the tumor wasn't causing pain. I may be unscientific and not sound reasoning, but I don't have to think in solid arguments all of the time.

I am so blessed to be able to take short term disability from work. I couldn't imagine how I could have been a good or equitable employee right now. I surely have days when I feel guilty for being away from the office, but it isn't long before God reminds me that there is no way for me to do more right now. I am learning a lot about accepting physical limitations and He is the teacher.

All of this leg pain has reawakening my fear of losing the use of my legs at some time. I have no reason for this fear, but it is real just the same, so I slowly work through what that would mean in my life. If I were to be paralyzed what would I have to do? What would I have to change? How would I cope? How would I continue to be me? As I think through this I am more prepared for this or another challenge I may face.

I got a little reprieve and rest; I spent Thanksgiving with family. It gave me a couple of weeks of parents and siblings helping with the children and helping me too. It ended up being physically challenging.

A few days into the trip I was in the ER with my leg. They ran a fresh MRI and verified again the the tumors in my spine aren't the likely cause of the pain. The best guess is that it is nerve damage. I can't see the spine surgeon until next week. His scheduler squeezed me in between two surgeries to make it happen. I am willing to do about any treatment to fix the problem and get my legs back!!

Send up any prayers on my behalf and that the doctor will be inspired to choose a treatment that will cure this problem.

What it is like to take Navelbine (Vinorelbine)

2015-10-27T21:01:00.003-05:00

I have been getting a lot of treatment lately. As mentioned in my last post the Kadcyla chemo failed quickly, meaning that tumors continued to grow inspite of receiving the chemo, and I have had to move forward to a new chemo. We selected Navelbine along with herceptin.

Of course, you can read up on Navelbine on sites like this one. And, you will read about common chemo side effects; hair loss, joint pain, constipation (being on chemo means you will forever be either constipated or have diarrhea), neuropathy (numbness in fingers and toes) and low blood counts.

Navelbine is a tough-ish chemo. I have only had one cycle of treatment, but this chemo isn't one that you just forget when the treatment is over. It left me very tired and suffering intensely with digestive issues. The digestive issues were among the worst I have ever had and I tried a lot of remedies.

For those of you reading this because you are facing the same troubles here are things that ended up helping me: Natural calm which can be found at Sprouts or Whole Foods, magnisium citrate was helpful for a few hours at a time and can be found at Walgreens or any drug store - it is very inexpensive and has been very helpful in the past but wasn't the best help this time, and fennel seeds for bloating and pain. The other thing it took was TIME - just time for my body to work through it, and that was aweful. Remedies that worked in the past (stool softeners, warm tea, a heating pad on my stomach while resting and beet juice) provided little relief, so I will need to be better prepared for the next treatment. I have to be better hydrated and will stocked on fiber in my diet in the days before treatment.

Another side effect was a lack of appetite, but that could be the chemo or the digestive issues. Again, I will just have to see if I can provide preventive treatment this time. My Onc Nurse mentioned that other patients have experienced more nausea after the second or third treatment, but the anti-nausea meds were adequate to control it so I will have those in hand when I go to treatment.

My plan to prepare for the next treatment is to focus on my hydration and nutrients more that I have in the past few weeks. It's amazing that radiation, a treatment with few physical marks causes such total exhaustion. It really knocks you out. Because of this I have just been getting to and from appointments lately (oh, and getting the house painted and carpets cleaned, and the fridge repaired, but I didn't do it myself). The next few days will be filled with juicing and water. I will also spend time in meditation and positive reinforcement with mantras and journaling - as my brother would say - my hippie stuff.

Additionally, I am preparing for surgery, so I should focus on getting extra protein to build up my body to heal itself. I am going to have ablation treatment on my liver. This will be a less invasive surgery requiring only one night in the hospital and a week or so to get back on my feet. I feel hopeful about this surgery and the success we will have. The surgeon explained to me that the chemo drugs used for breast cancer are less effective on the liver. It's all chemistry. I don't understand it at a micro level, but I understand the concept that some chemical compounds are going to cross over to some cell types better than others, like bone over liver.

So, I keep doing what I have done for years. I pray that the Lord will direct me to doctors who are competent. I pray for my doctors and their staff to be inspired by the best options for me. And, I pray to know when to trust them and when to let me research push me to ask more questions so I either understand better or so we select a treatment that feels right.

My approach in coping with and treating my cancer has grown in scope over the years. My first defense has always been in trusting God that He is in control. I have not always been as faithful in this as I want, but it is what I believe in and it is my foundation. Secondly, I find a medical team that I trust and feel good about. I also need to know things, so I research and education. I try to use a combination of "scientific" base websites from hospitals and cancer.org as well as reading blogs to see what other patients are experiencing. And, I take it in knowing that every cancer patient is different and so are their reactions. I have also found a lot of success with adding holistic and homepathic treatments to my traditional/western medicine. You have to use caution and be in complete communication with your whole medical team about any of the treatments you are considering. Some treatments, while naturally occurring in nature, are not a good mix with some drugs. Think on grapefruit juice, many types of medications are not effective when you also drink grapefruit juice. Also, antioxidants, when overly abundant while receiving chemo can actually have a negative impact on the effectiveness of chemo. I don't want to minimize the effectiveness of one treatment by adding another that cancels it out. I believe emotional health is a vital tool in strengthening physical health.

The body and spirit are connected - that is what gives us life. Learning to have our body work in harmony with our spirit is vital. This is why I think yoga, meditation, spiritual worship and other activities are often habits of people who are successfully managing their chronic or terminal illnesses. So, I try to be kind to myself (this can be really hard) and I try to live a Christ centered life practicing love, forgiveness and charity in everything I do. I am the recepient of more charity and giving than I could ever hope to give back - I am overwhelmed by the many offers of help with meals, housekeeping, child taxi services and more that continue to be given to me. I want so much to be giving, but have spent years receiving the help from others. All this help comes with such love and care it is a healing force in my life. Many times the love that has accompanied the service has been more powerful in healing and strengthening me than the gifts, meals etc. have been. After all, isn't service just a mode of delivering love?

Sending my love and hope for your journey--
Kel

New chemo + radiation + exhaustion

2015-10-12T09:16:00.001-05:00

The quarterly scans I last had showed new lesions in the left leg and continued spots on the liver. More horrible right hip pain led to MRIs that showed lesions in the marrow of the right hip. So, Kadcyla has been added to the list of failed chemo treatments. I am pretty unhappy about that since it was an easy chemo to tolerate.

I am back in radiation for the right hip. It's an emotional struggle to face.

I also started a new chemo, navelbine. It isn't too horrible, it has caused a lot of stomach issues and I am completely tired all the time. Wait... I guess that is pretty bad. But, it could always be worse.

I am struggling to do the things that life requires; kids, work, cleaning. So, we will just keep faking it for a while.

My experience with Kadcyla (TMD-1)

2015-07-09T19:30:00.000-05:00

Kadcyla is a targeted cancer treatment being used in patients like me who have metastatic breast cancer that has progressed using taxane based chemotherapy.

Common side effects of Kadcyla include

fatigue
tiredness
nausea
musculoskeletal pain
headache
constipation
low platelet count
liver problems
low levels of red blood cells
nerve problems
low levels of potassium in the blood

But, if there is something I have learned about cancer treatment, there really aren’t common side effects. I have frequently experienced the opposite effect of many drugs. The truth is making notes about my side effects helps me compare what is happening from one treatment to the next so I can determine which responses are likely side effects from the drug and what may be the result of something besides cancer treatment. I find this helpful in using meditation to manage some side effects and proactively taking medication for others.

Today was my second round of Kadcyla. I am on a 21 day cycle - I get an infusion on day one and then 20 days of the drug doing magic inside my body. Then we start at day 1 again - and that is what makes it a 21 day cycle.

Side effects I have had with Kadcyla

The first side effect is absolutely an emotional response. As the nurse hangs the pre-med and chemo bags on the IV pole I start to feel a headache coming on in anticipation of the real headache that the drugs give me. Recognizing this false side effect leaves me taking a deep breath recognizing that I don’t have a real headache and focusing on something else like Facebook, Pinterest or TV.

About 2 hours into treatment the skin around the IV needle that goes directly into the port in my chest gets itchy. I am not sure if it is the drugs or the tape. I notice the itching, but it isn't anything that affects me more than this recognition. But, when itch starts I always look at the site to be sure there is no redness or indication of a reaction to the medicine. But, so far I haven’t had that very often. When I do have a reaction, stopping the treatment, getting an extra dose of Benadryl and resuming treatment at a slower pace has worked.

The side effects I do have from this drug are listed below with an explanation of severity and how I manage the side effects.

The feeling I need a nap: these hits after getting the pre-medication cocktail. The pre-medication cocktail includes Benadryl to prevent an allergic reaction to the chemo and anti-nausea medication for the obvious reasons. How I manage: sometimes I take a nap and sometimes I don’t. If you are a patient getting chemo and you feel the need to nap I encourage you to do it – rest is one of the best medicines.
Headache: I usually get a headache after getting chemo and Kadcyla is no different. The best treatments for this include: hydration to be sure there isn’t any dehydration contributing to the pain, a brisk walk to push extra oxygen into my body, plain old pain killers to knock out the pain so the side effect doesn’t spiral into something worse, and when it is worse I have medication to treat migraine headaches.
Exhaustion: this isn’t just the need to nap but the inability to focus on anything and feeling like I can barely sit up. It’s complicated by the feeling that I can’t walk from the living room to my bedroom to get into bed or the feeling that once I get into bed I won’t have the strength to pull the blankets up. Oh, that sounds so dramatic! But, that is how “tired” feels when you are going through cancer. I am not going for a dramatic scene because a cancer patient is usually too tired to care about drama and attention. ~That is how I am anyway. The best treatments for this include: if I can possibly push past mild or moderate tiredness to act and live normally I do it! Last time I got Kadcyla I was asleep most of the time for 4+ days. It is always the worst on the first treatment when my body is shocked by the new drugs along with the emotional workout of starting something new. The best treatments for me include: resting – when you can’t stay awake any longer then go to sleep, eating healthy protein and some produce – if your body needs the nutrients and you choose good food you can practically feel life coming back into your system, hydration – again just be sure there isn’t any dehydration contributing to the tiredness.
Potty problems: This is so personal and probably not something friends want to read – so just skip this one! For other cancer patients who may be suffering with diarrhea or constipation you are probably DESPERATE for help. I know how that desperation feels so I am going to tell you some secrets. The best treatments for this include: the first secret is a good doctor or nurse will ask about your bowel movements. There isn’t a drug used to treat cancer that doesn’t cause either diarrhea or constipation – welcome to your new life. Second, treat this symptom – don’t just endure it. I have tried to endure and it really messes up life more because you feel rotten and don’t want to leave the house. When you leave the house you are at risk of getting stuck in a public restroom with a real issue. NO BUENO! For constipation: Be sure you are drinking enough water; I have read you should divide your body weight in pounds by half and drink that many ounces of water each day. An over the counter stool softener for constipation is a good idea. There is also a solution at your local drug store for severe constipation – a bottle of Magnesium Sulfate which is kept near other constipation remedies. For less than $2 you can have a drink (at least ½ the bottle) and within hours things get moving. For diarrhea: this is another issue all together. The best trick I have is something I learned from a nutritionist at Cancer Treatment Centers of America. She taught me that a banana with a citrus in a smoothie along with pectin can bulk up what is in your intestines and correct the problem. (Try some pineapple, a banana, pectin and almond milk/coconut water.) Also, make sure the bacteria in your gut are healthy – add culterelle or something similar to your daily pill popping regimen. If this doesn't solve your issue - keep searching for a solution. Problems in the bathroom are aweful. OK – ENOUGH POTTY TALK. But before you use any of these treatments TALK TO YOUR DOCTOR – they need to be aware of your side effects and you want to be sure there won’t be any negative or dangerous interactions with other medications you are taking.

I have found the best way to manage side effects is to keep track of them so you know when they are hitting you, if they are getting better or worse from one treatment to the next, and to figure out what is working and what isn’t working.

Just don’t suffer through side effects, this is an issue that caregivers can help with a great deal because cancer patients might be too overwhelmed to remember and talk about side effects. A cancer patients body is doing enough work fighting cancer, processing chemo and coping with the emotional components of their illness. Side effects can really bring you down because a cumulative effect and there are usually solutions to the side effects.

You can’t survive beautifully when you are suffering more than you must.

The chemistry behind cancer

2015-06-24T18:18:00.002-05:00

As I am starting the next phase of chemo treatments and have new biopsy reports back it is a great time to clarify some of the logic behind this crazy cancer care.

When I was diagnosed with breast cancer originally back in 2006 I was very young, only 30 years old. I had 3 children, the first was born before I turned 26 and I breastfed all 3 children – so, in spite of having children and breastfeeding (two factors that decrease likelihood of breast cancer) I still got it, and very young.

While doctors can get a pretty good idea of whether you have cancer or not, positive confirmation is done through analysis of cells. So, the biopsy is the definitive determination of whether you have cancer and what type of cancer you have. Additionally, they test breast cancer cells to understand which elements may be feeding the cancer growth. Three key elements are tested. The first 2 test the amount of hormones, estrogen and progesterone, present in the cancer. The outcome is referred to as being estrogen or progesterone positive or negative. Positive = the cancer feeds off of that hormone. The third element test for a protein called human epidermal growth factor receptor 2 (HER2), which promotes the growth of cancer cells. Again, positive means that the cancer feeds on this protein. About 1 of every 5 breast cancers has a gene mutation that makes an excess of the HER2 protein. HER2-positive breast cancers tend to be more aggressive than other types of breast cancer. (mayoclinic.org)

So, you may hear about a breast cancer that is triple positive, triple negative, hormone negative and Her 2 positive or hormone positive and HER2 negative. My cancer was triple positive – estrogen, progesterone and HER2 all assisted in the growth of my cancer. This is a very aggressive form of breast cancer and, until targeted HER2 therapies were developed, was very deadly. With the discovery of Herceptin in 2006 for non-metastatic breast cancer and now Perjeta which was FDA approved in Nov. 2014, the prognosis is significantly better.

Wanna geek out? See the Herceptin timeline here. See the timeline of other Genentech drugs, including Perjeta here.

In 2011 when I was diagnosed with metastatic breast cancer the cancer had spread to my spine and sternum. A biopsy was done, which confirmed that the cancer cells originated from breast cancer. So, while the cancer was making a home on the bones, it is still breast cancer. This is true of any metastatic cancer. It is still the cancer of the original site, whether breast, skin, colon, lung etc. But, it has spread to a distant site, which is what makes it metastatic.

The 2011 biopsy of my spine showed the tumor to be hormone positive by HER2 negative. So, the treatment I had previously for the HER2 protein was effective.

In 2014 I had a lymph node in my stomach with cancer activity. That biopsy revealed the cancer was again triple positive, so we added the Herceptin and Perjeta back into the regimen.

My most recent new cancer growth, a lesion on the liver, has been biopsied and shows to be hormone positive and the first test (a stain) showed it as HER2 negative. A stain test is very subjective because a lab employee is comparing the amount of staining in the specimen to a known positive cell. What one diagnostician may say is a 2+ another may call a 3+. Therefore, another sample is sent to a central lab for a FISH test. The FISH test is objective because the diagnostician counts the number of HER2 receptors on the cell. The FISH test came back saying the tumor is triple positive.

So what does all of that mean? Well, we know the chemo I have been taking – taxol – is no longer effectively controlling the cancer because tumors have started to grown in the liver. We also know that the HER2 treatments are ineffective because that protein has not been suppressed in this new growth.

Last Thursday I began a treatment called Kadcyla/DM1. Kadcyla was approved in March 2013 for use in metastatic breast cancer treatment. See press release here.

In my opinion, it is good that the liver lesion presented. The liver lesion gave us soft tissue for a biopsy which tells us about the chemical make of the new tumors in my body. This makes the choice of drugs based in science, not a best guess. With the tissue sample we are also hoping to get genomic testing of the tumor done. What is genomic testing? Well, it is looking at the DNA of the cancer cells and determining which part of the DNA is damaged. It answers questions such as which chemo agents will work best on a subtype of cancer, other therapies that could be effective, etc. Hopefully over time these tests will become more advanced and will provide even more information.

All of life is a series of chemical and biological reactions. Cancer is just one of these reactions that went wrong and then reproduced incorrectly out of control and creating a mass of damaged cells in someone’s body. Understanding the science of cancer is the first step in choosing smart treatments. I am hoping other chemical reactions will help me to control/master the cancer in my body. I believe that complimentary medicine, treatment offered along with the western medicine I receive, could help my body fight the cancer growth. At least, it will make me feel good about what I am doing for myself. So, one complimentary treatment I am choosing to add is nutrition.

Kadcyla has the side effect of losing your appetite and this is all the more reason to be thoughtful about what I am putting into my body. One change is buying organic produce according to the Dirty Dozen, Clean Fifteen theory. Also, I am realizing how hard it is to get adequate protien – again the lack of appetite. (Guidelines on protein consumption) But, one thing that I have started, and enjoy a lot, is juicing. Did you know you can juice cabbage? Did you know broccoli juice is bitter? I am increasing my fruits and veggies and like what I feel like when drinking fresh juices.

So, that’s the long update.

The state of me and girls names that aren't the names of girls

2015-03-24T22:51:00.002-05:00

I have been off chemo since December. It didn't start off as a plan to be off for that long, but there were the holidays and then I started having such intense back pain we wanted to get under control. That pain became debilitating, traveled down my leg and progressed from numbness and difficulty lifting my leg into the car became an inability to walk without focused effort and excruciating pain.
One Monday I was in bed when a friend called. I had been crying and praying for help when she rang. I answered the phone in sobs. She dropped everything and took me to the ER where a lot of drugs and a couple of follow-up appointments later I found out the cancer spread to the nerve endings in my spine. I began radiation and got relief within days. My leg is no longer numb. I can lift it again and have recovered a significant amount of strength. It is truly miraculous to me how quickly I went from traveling across the country for the holidays and then work to being unable to get out of bed and then was back to work again. Another proof-case for the need to enjoy every good moment of your life, and treat all of them like they are good because tomorrow may be so rotten you will wish it was today again.
All this time off chemo has given me so much to be thankful for. I could say it shows me how much I have been missing, but that just sounds sad and makes me feel low. I prefer to see the glass half full.
I have hair. It took about 2 and a half months to grow enough eyelashes and get them thick enough that they brush on the lenses of my eyeglasses. I also went in and got a haircut - something I haven't done in about 2 years with the exception of having my neck trimmed once. I loved it even though I knew I would be loosing my hair again soon. That day it needed cut and I just enjoyed that experience rather than debating if it was a waste of time and money. Living for the now!
I have also had a different parenting experience lately. More energy and strength means more normal activities like running errands and crafting and cooking. I forgot I liked to cook.
My entire body feels different than it has in a long time. Is this how the rest of the world feels?
But, the chemo-cation is about to end. T minus 1 day until they start dripping the next hope for NED (no evidence of disease) into my veins. I have been reading up on all of the studies again.
I have read about Marianne, Th3resa and Emilia - all girl names and none referring to a girl. These are drug studies for chemotherapy protocols for metastatic breast cancer treatment. My most recent regimine, Herceptin + Perjeta + Taxotere, sent me to the hospital for vomiting 2 out of the 3 weeks I was getting treatment. I also had migraines and dreaded simple things like walking from the car to my office. We are now looking to switch to Taxol with Herceptin and Perjeta if it is approved by the insurance company.
A few weeks ago I took the Herceptin and Perjeta without a chemo agent. I still had a migraine, though much more mild - only one day - and I recovered to a near normal energy level after 2 days.
Anticipating what will happen with this round is stressful. What will I feel like, will it be manageable, and if not, how bad will it be? I don't think the kids can cope with Mom staying in the hospital again. I don't know if I can cope with feeling rotten after feeling so good.
So, I know the anxiety will grow over the next day and a half. But, I also know that God is with me - He is in control and has the power to see my little family through whatever is coming.
So, in spite of the nerves and unknowns, I move forward with conviction and gratitude that I am not alone.
God bless us, every one.
Kel

Why women need friends

2015-01-12T21:55:00.001-06:00

I have enjoyed a string of happy weeks in a row. It started with Thanksgiving- my favorite holiday. We had another great year celebrating with friends. It's always so great to be at their house because it is a happy place and they are all (adults and children) great chefs and bakers!

Next, with the generosity and love many, we spent Christmas in Utah where I grew up. I loved being with most of my family, baby bro couldn't bring his new bride home, but the rest were together. And, I got to connect with many friends including my best friend since 1st grade.

And, after Christmas a couple of friends from Idaho came down to Texas to make life easier for me by storming in and cleaning the house and putting together freezer meals.

From my first grade bestie to these awesome women who became dear friends after I entered motherhood I am reminded how valuable friendships with other women can be through out life.

Having women who see you as you are, admire your talents, accept your short falls, and make you feel good about who you are and what you can still become - does it get better?

If your friends don't do this for you - get new friends.

I am so glad for these happy weeks. My soul feels refreshed. I am going to use this fresh feeling to approach the coming treatments with a brightened outlook. I have grown so weary from treatments and hospital stays over the last years, especially in the last 4 months.

I am going to take a snapshot of this renewed feeling so I can remind myself in the coming weeks.

New year, same disease

2015-01-03T11:10:00.001-06:00

We have just returned home from 11 awesome days with family. I don't make it back to Utah often- it's just so far away, takes so long to drive and the cost of airfare is insane. This was our third visit in the 6 years we have been away from the region and was the most enjoyable for sure. It was so fantastic to see the mountains and be with my sisters.

I loved getting reconnected with nieces and nephews- all amazing kids with great parents. I am so grateful that even those little ones who don't know me well endured the hugs and kisses with giggles and loved me back.

While being away from my cancer was a good change I started having really intense pain in my hip and numbness radiating both down my leg and across my stomach. No question something is happening. The Dr. thought it might be arthritis, but it feels more significant than that now. Even getting back home to my bed I am having trouble. I am also noticing some swelling in my leg - I think it could by lymph fluid that isn't draining. Ugh!

I had some testing before leaving town. Now I have a couple of intense days at work before I will be back at the Dr. I am feeling concerned about what it is going to be. My greatest fear is a spread of cancer in the lymph nodes around my hip. That would mean this chemo isn't working and we need to switch again. What will the next one be? How will the side effects be? How long will it work? And, why isn't this new cocktail working?

I like to joke that maybe the answer is that I don't even have cancer. LOL.

I feel like I have aged 10 years since starting this new chemo around Halloween. I feel pale, my eyes dull, my skin old and my spirit less hopeful.

Add to this the worries about loosing my FMLA qualification since I am moving to a new employer (same job) and I am truly worried about the future.

What happened to my faith?

I am completely dependent on the Lord and the mercy of others if things take a downturn. And, it isn't that I haven't been blessed by both, it is just the potential for a perfect storm on the horizon.

Let go and let God.

Facing the long day ahead

2014-12-16T08:50:00.002-06:00

When a coworker is the one to remind you of your bone scan there is reason for concern.
I knew I had the test this week, but there was no part of my brain that cared which day and no part that felt the need to get organized. Leaving work last night MS wished me luck on my bone scan tomorrow (today) and that is when I realized - I had not even cared when it was. Is this a sign of exhaustion, becoming numb to the volume of medical appointments or complete apathy? I don't know, but even being here this morning I am somewhere between annoyed (I hate it when the treating facility asks me to complete a medication list!) and wondering if tears are just going to start falling. I don't have any particular reason to cry, but I am that kind of tired. When I feel like this I feel like a child. You know, children cry when they are tired, not for any reason, but because they just can't be awake anymore. And, while I am sure I could fall asleep with very few comforts, it is a different kind of tired - bone tired where no amount of sleep alone is going to resolve the problem.
I also feel an overwhelming sense of stress. I am stressed about medical test results, taking this chemo that has landed me in the hospital twice in the 3 cycles, Christmas gifts and visits with family, and work. Add to this the upsetting phonecall I got last time I sat in the cafeteria waiting for this test last time, and I think I would like to crawl under a rock right now!
I am going to be glad when this day is over. And, tomorrow I am going to get back to being myself. I am going to be happy and optomistic. I am going to have hope and be excited about Christmas.

My experience with Herceptin, Prejeta and Taxotere

2014-11-04T20:56:00.000-06:00

I am on day 20 of my first 21 day cycle, so me experience at this point is very limited, but not only is it good for me to think through the side effects of the drugs before meeting with Dr. J on Thursday, as a cancer patient it is invaluable to consult the experience of others to anticipate what a new treatment will be like or to check my side effects against what other experience.

Granted, no two people respond the same to these drugs. Interestingly enough, two people with similar cancers can get the same drug and have some similar results and some wildly different. I think this is puzzling and strange. If two people take Tylenol the experience is similar. As is the case with many other drugs - but not so with chemo. So - if you are a cancer patient and reading this to see what it may be like for you to take these drugs - remember it could be different, and hopefully easier for you.

When Dr J described these drugs she explained the side effects should me minimal. Hair loss was practically a guarantee. I have a sliver of hope still that I will keep my hair. However, for the last week or so I have been feeling the hair loss start, and yesterday it began falling. I suppose I will be bald again within 2 weeks. I could begin a rant about how much it sucks to match headscarves to outfits 7 days a week, but instead I will speak out for the bald babies of the world. So, being bald is cold. Give your infants a break and put a hat on them all the time. Even in the summer. Having the sun shining on that tender skin hurts. Don't assume your baby wants to be cooler by not wearing a hat. Protect their heads.

Losing your hair - what is it like? When the chemo begins killing the hair follicles, which causes the hair to fall out, it feels like I have been banging my head against a wall or been hit with a baseball bat. If I touch my hair and cause it to move at all it hurts. If I touch my scalp it hurts. The pain intensifies as the hair loss continues and my scalp is tender for a short time after I am totally bald, but it hurts less when the hair is gone. However, within days of being bald it doesn't hurt at all anymore. Being bald is really cold in the winter though. After I lost my hair the first time, whenever I saw a baby without a hat or cap on I would be angry. So, being bald is cold. Give your infants a break and put a hat on them all the time. Even in the summer. Having the sun shining on that tender skin hurts. Don't assume your baby wants to be cooler by not wearing a hat. Protect their heads.

I have also been dizzy almost everyday, all day long since my first treatment. Chemo can do this to varying degrees. And, it has been like that for me. Some days I am manage better than others and some days the dizziness causes nausea. It is best when I don't move - just stay at my desk and keep my chair still. But other times, like today, even laying down I feel like I am swaying and it is a challenge to accomplish normal tasks.

My first treatment left me with awful headaches and nausea. Nothing I had used in the past to treat these came close to stopping the problem, so I landed in the hospital. That story is in a previous post,Biopsy results, Cleopatra study and totally bombing my first treatment.

I am emotional. I have cried more in the last 3 weeks than I have in years. I swear it is true. The other day I heard a song on the radio as I drove into work, "I loved her first" about a father telling his daughters new husband to remember that this woman is always going to be his baby and should be treated right. My kiddies can't even drive yet, but I bawled for the day when I will have to trust someone else with the care of their hearts.

My crap-o-meter is maxed out. When I see something that isn't right I can't hold my tongue about it as I usually do. While there are a couple personal examples of this I am not going to share them here. One I will share is this, last night as we attended the National Junior Honors Society swearing in for my daughter they played the national anthem. A middle school age boy was in the row in front of us. He had some change in his hand and kept clanking it. I wanted to stop his forcefully but I managed to just tap his shoulder and tell him to be quiet. This coin-in-his-hand boy is a culmination of the emotions, headaches and crap-o-meter failures.

Basically, this regimen sucks. I read about a number of patients with minimal side effects. For me, this has been like going back on the hard chemo I took in 2006. I have thought a lot about stopping cancer treatment all together. If I ever need to make that choice I want to make it early enough that I have a decent amount of time where I feel healthy so that I can make the memories I want to outlive me. I don't want to be in treatment up until the time I have no strength left and the only memories of me are the ones where I was sick, tired, dizzy and miserable.

But, for now I am going to take it one treatment at a time. I am going to get chemo this week which can be translated to, I am going to live beyond my means and spend money I don't have on drugs that make me nearly useless to the world and my family because, although I don't even have enough hope left to feed an ant others do. I am going to put my faith in their hope and prayers because I want to be there when my kiddies choose someone to marry so I can warn him about the fear he will live with if he betrays their hearts.

Medical expenses. Shocking.

2014-11-02T00:36:00.001-05:00

I got a bill today and without looking closely I was shocked to see a 5 digit figure as my portion for my recent hospital stay. Because I had gone through another mountain of medical bills just an hour earlier (which ironically totaled $666) I couldn't handle thinking about that much money so I just walked away for a while.

Upon closer inspection tonight I see it was not the bill for an inpatient stay, but for the biopsy that was done about a month ago. $12k+ for the biopsy? $12k to tell me I am sick? I hope when I call my insurance company they can make this nightmare (the bill) go away.

Money and the cost of my cancer care is a subject I haven't blogged about. One reason is that I am a very proud woman. But, cancer is expensive. I spend more on medical care each year than our annual household income when my second child was born about 10 years ago.

Socialized medicine, required health insurance, Obamacare... NEVER bring up those subjects with me. It will get ugly.

Biopsy results, Cleopatra study and totally bombing my first treatment

2014-10-29T21:22:00.001-05:00

This blog is long overdue for an update, and if I don't get this up then a huge chunk of this story will be lost forever.

At my last entry I was waiting to go in for a biopsy. The biopsy went very well. And, the results were conclusive. But, there is a story behind that fact too, so let's just pick up were we left off.

I met with Dr. J 10/9/14. We reviewed the results of the biopsy. The first test results to come back are the hormone test. I came back estrogen and progesterone positive, as I always have. Next, the perform a stain test to determine if the cancer is Her2 positive. (I have gone into detail on HER2 before. You can read up on my post about cancer growth) The stain came back in such a low range that they wouldn't normally perform a FISH, a florescence in situ hybridization, test. Dr J asked them to perform the test anyway, in spite of some teasing and questioning. The FISH test came back clearly showing that the cancer is HER2 positive. Good thing Dr J asked them to run the FISH, because if she hadn't I would have demanded it. I have always known that as soon as we could run another biopsy we should. I felt good about the treatment decisions we made, but never felt confident that the tumor wasn't HER2+.

For those versed in the difference in protocols, it seems moronic that I would be happy with a treatment plan when it wouldn't address the HER2 status. I can only say, I felt like both treatments were an option but I wanted to have a treatment that would allow me the most strength and fewest side effects at the time. That would not have been chemo with Herceptin.

So, with the new biopsy information the visit concluded with a dramatically new treatment protocol. (I really feel like I wrote about this before, but I can't find the post. If you are reading this again, welcome to my mind. Sometimes I don't know what has happened before and what is deja vu.)

I will be taking a 3 drug cocktail.

The first, Taxotere, a chemo that will kill off all the fast growing cells (cancer and hair a like) on a 3 week (or 21 day) chemo cycle. Day 1 is chemo day. Then on the 22 day we start at 1 again. I get chemo only on day 1, unlike the last treatment which had chemo on days 1 and 8. You can tell a lot about the chemo by the cycle. Giving me more days between doses means that this chemo is tougher- it takes more time to get over it before your body can handle any more.

Secondly, I will go back on Herceptin. I took this back in 2006 and responded very well. The side effects I had then were uncomfortable but manageable. In fact, I was driving myself to and from Utah from Idaho for this treatment.

Finally, since 3 is better than 2, I will take Prejeta which works along with Herceptin for a synergistic effect. These three drugs together have been tested in the Cleopatra Study, which you can read about here, here (very technical), or get the cliff notes here. The great news is this has been a successful protocol for many metastatic breast cancer patients. They are enjoying "unprecedented" 16 months without cancer advancement. It is being called phenomenal and unprecedented. Pretty fancy words when it comes to cancer. I guess they don't mean as much to me, because they aren't the words I am living for. I am living and fighting to hear the word - miracle, undetectable, we can't find any evidence of cancer. I don't mean to sound like this study and protocol aren't good news. It's great news. I should be over the moon, but I don't have it in me to hope this is THE ONE. Instead, I am going to follow the protocol and trust that one of these time God will grant me that miracle I am praying for because until that happens I am still going to die of cancer. My enthusiasm is tempered and realistic. I am not ever going to be satisfied with 16 months of hope at a time. I want to be like the rest of you. I don't want to know how I am going to die. I want to believe it is reasonable to think I will live to be 80.

So, I left Dr J's office with this new protocol outlined. I went to work getting myself psyched up and the children prepared. I even attempted to get the house prepared, but without friends who filled the freezer with meals and planned for meals in the coming week I would have been lost. Dr J and team went to work getting things authorized with insurance. We made the appointment to begin treatment one week later.

10/16/14 - This was my first long treatment without my mom. I haven't had a treatment that took so long to administer for about 8 years. I was grateful to be going into this alone. I am healthy enough this time that I would have to watch my mom suffer as she watched me there. I don't think I could stomach that again. A child should never watch their parent watch them go through cancer. It's hard to be the sick one.

I went in to this treatment prepared for the 5 hours on IV infusions (forget that - it was more like 8 hrs) I had my hotspot & laptop, it was almost like being at the office. I also had my hydration, hard candy and sunglasses for napping. And, it wasn't like I was there alone, Enrique was with me. He didn't leave my side once all day. Notice the black bag? Some chemo can't be exposed to light because… I don't know why… anything could happen I guess. And, that was just pouring into my veins.

Thursday went ok, Friday went ok, Saturday went ok, Sunday … no bueno. By Sunday night I was feeling awful. I asked some friends to give me a blessing (A blessing given by a Melchizedek Priesthood holder, by the laying on of hands and by inspiration, to one who is sick or otherwise in need of special counsel, comfort, or healing. If the blessing is for the sick, consecrated oil is used (James 5:14-15) Learn more about my beliefs here. Within a few hours I was worse yet and called friends back again to stay with the children and take me to the hospital. I got loaded up on anti-nausea meds and they tried to help with the headaches I was having. By 1am I was home and in bed again. Monday mid morning I was still feeling pretty pinky. This would have been day 5 of my chemo cycle, and that falls right into the nadir point. The nadir, or low point is clarified here. Another friend took me into the Dr where they gave me fluids, to no avail. By the end of the day they wanted to close the office and I couldn't even walk out the door. They arrange a hospital bed for me and wheeled me over to the hospital. Remember a few weeks ago when I was down and just grateful I wasn't the person leaving on a stretcher? Well on 10/20 I was that person.

I spent Monday-Wednessday in the hospital as migraine headaches and nausea kept me from being able to rest and rehydrate. I had great nurses and doctors and I was so thankful to even more friends who visited, brought me soap and lotion so I could get rid of that hospital smell, and took care of my babies. I was definitely sad to be away from the kiddies - it breaks my heart to think of them home and worried, but they were well loved and cared for. But, what a happy day when they got home from school and I was there!

It took the rest of the week before I attempted working again.

Sorry, this isn't a very fun read, but it tells my story for sure. If you have had chemo or wondered what it is like, this is a true case. It is worst than most - usually a hospital stay isn't required. I know in my mind that when I go for my next treatment it won't be this bad because we know what to expect and I have new prescriptions to manage the side effects. But, my heart is scared.

I only know one way to handle this - just keep going. As soon as I regain strength I add in as many regular activities as I can. I don't look back, only ahead. And ahead are a few more treatments (3 if things go great, 5 if needed) and an end to this chemo. I have also learned it is a waist to wish this challenge away. I don't know if the next challenge (or chemo) will be easier or harder, so I am happy for what is good with this chemo.

What is good about this chemo? I am glad you asked, because this is a great way to sign off…

1. I have one down and know how my body will respond. Now I know how to fight back

2. I have good friends around, and I need them! I will be asking for their help.

3. They are awesome at work.

4. I have the best kiddies ever! And, we are all under the same roof.

How I imagine cancer growth

2014-10-12T22:40:00.000-05:00

I picture little cancer cells in my body as having a squiggly outline, messy hair and enormous mouths. I imaging these little monsters hanging out wherever they hang out a in my lymph and blood system, which look like a lazy river. Each time a source of cancer fertilizer floats by their oger-like mouths start chomping.

This week, with the results of my biopsy, it has been clarified that my cancer is indeed Her2 positive still. When the cancer originally presented 8 years ago the biopsy came back showing triple positive.

What is triple positive?
It indicates that the my tumors grow in response to the hormones estrogen (as in as many as 75% of cases) and progesterone (as in as many as 65% of cases). The third + comes from being HER2/nue positive (as in 20-25% of cases). Her2/nue, often shortened to Her2, is a more aggressive type of cancer. This was definately the case with me.

When my cancer was discovered there was a very large and palpable mass. My Ongologist figured it was probably 10cm. Between my first and second chemo I could feel one or two additional lumps. So, in the course of a very short time I believe new masts were growing. Luckily it was also very responsive the the A/C, paclitaxel and Herceptin regimen I was given. I didn't have any heart health issues which are possible with these drugs other than HBP that was easily controlled and has since almost reversed completely.

When my cancer returned about 3 years ago it was found in my bones. While a biopsy was performed and extensive testing was done across the country, the results did not indicate the tumor was HER2+ any longer.

So, how did it go from + to - to +? Bone tumors are very difficult to biopsy - it's a solid matter versus soft tissue. So, it was probably HER2 positive all along. In fact, even the biopsy this week failed to indicate being HER2+ in the first test - an ImmunoHistoChemistry (IHC). Protocol would be to trust the results of the IHC. But, luckily Dr J requested that they move forward with the next test, a FISH test. (I say luckily not because I was lucky, but because if she hadn't I would have been angry and insistent that we go back and get the test done. I mean lucky for her since she didn't have to hassle with me.) It's a little funny to say, "Yeah, I had a FISH test." I feel like I could follow that up with, "they found out I am a mermaid."

Since I was probably always HER2+ and the treatment protocol is different when they aren't treating HER2 I did receive 3 years of treatments that weren't as custom tailored to my cancer as they could have been. It is easy to ask the question, what was the price I paid for not getting the HER2+ treatment for the last 3 years? And I will never know the answer. I don't have to know, because the treatment I received did a great job of keeping the cancer pretty controlled. I had results that far exceeded average experiences. I also was able to exhaust a long list of medications. Had I been treated with a HER2+ regimen for the last 3 years I would have already cycled through a number of chemo therapies that I am just starting now. Additionally, the drugs I have taken in the last 3 years, while not without side effects, have had side effects that were manageable and allowed me to work and raise my kiddies.

As I have gone through treatment it has often been my prayer that I would have peace when the choices about treatment I made were good choices that would offer me the best balance between being a druggy and a mommy. I have had a lot of peace over the last 3 years about the medical choices I have made. I have been so blessed to know the questions to ask and have felt guided in what I have done. Another case in point, after visiting with Dr J Thursday I talked to her about adding the bone treatments back into my protocol. Not that she would have forgotten or not done it, but I am so thankful to know what I need and be able to ensure that my medical team is giving the best of everything I need.

from the Perjeta website homepage

Starting this week I am going from my 30 minutes of medication (which requires 2-3 hours at the doctor) to a 4-5 hour infusion. I will go from pre-meds (the anti nausea meds) and a 5 minute injection to premeds, bone strengthener shot and 3 chemo treatments. (technically 1 is a chemo and 2 are monoclonal antibodies, they are often referred to as chemo, side effects are more mild than many chemo drugs) I will go back on Herceptin, which I took before and had good results with. I will add perjeta, which from the website looks like it may turn me into a cat. And, to round out the cocktail, taxol. Taxol is a chemo that stops the division of cells, thus making it impossible for those hairy little monsters to divide and grow. And, because it stops the division of fast growing cells, all fast growing cells are going to get beat-up including hair, nails, gums and the mouth in general, GI track and blood cells, etc.

So I will probably become a hair-less cat. Yes, this is the 3rd time I am loosing my hair this year. I lost it right about Halloween last year, I remember thinking I should be a pirate. And, It will probably be gone before the first week of November ends again. This year I am considering something permanent to decorate my perpetually bald head. To keep from going on and on about how much I just want to grow long, dark, thick hair I am going to close now.

Meow.

The happy game

2014-10-02T18:44:00.001-05:00

Sometimes, even for me, there isn't a smidge of a drop of happy left anywhere in your soul. It's like that right now.

I have just had all the tough news, emotionaly draining, blood testing, child-rearing, face-booking, "where-are-all-the-good-men"ing, bill paying, x-husband not-hating I can stand for a lifetime. And, I just want to scream and cry and shout. I want to throw a fit so emphatic that the whole universe will be afraid of not giving me just what I want. But, I am too tired to throw a fit. And, I have a horrible headache. So, I need to play what Miss Gae called "the happy game". I have been trying to play for days, but I keep losing. I hate feeling like this. It doesn't feel like me.

The happy game, where you list things you are thankful for or happy about until you feel it.

1-I love a nice rain storm, we had one today.

2-Steak and potatoes - that was dinner.

3- Tylenol.

4- Memories of the sea to enjoy on days when the ocean is far away. I loved seeing half moon bay in the spring.

5- Ceiling fans. Good when it is hot or cold.

6- Chocolate milk with ice cubes. Or better yet, crushed ice.

7- Apples

8- Dreams about what I would do if I won the lottery. If you've been good to me you will enjoy the wealth also.

9- Dreams of living a vagabond lifestyle. Traveling the world, moving from city to city and finding work along the way. Staying as long or short as I fancy. Learning the languages and becoming part of the culture.

10- Pretty nail polish.

11- Keeping up with my C25K schedule. I fight for every step, it's not sexy, but I am on track in spite of a dramatic treadmill incident, my chemotherapy and other medical crap.

12- Books- or the ability to loose myself if some fictional world for a little while.

13- Men who are good husbands and fathers. I would have no hope if it weren't for you.

14- Dreaming (I really dreamed this last week) about sliding all around on a wood floor in my socks. I wish the whole world were wood floors.

15- Sending my kids to good schools, buying good health care and dental care. We may not wear fashion labels. We don't have most of what I thought I would have in life, but they have a good life and promising future- thanks to me. I do it by myself. And by that, I mean I work hard and the grace of God makes up the difference. I don't have financial support from anyone else.

Breath in and out.

The whole story of my pending biopsy

2014-09-29T22:47:00.002-05:00

I have had a down-turn in my cancer situation. Recently I completed my 6th cycle of Halaven chemo. So, in spite of completing CT scans a couple of weeks ago, which came back clear, Dr J wanted to get a PET scan. The insurance company began denying PET scans about 9 months ago when my CA27.29 blood tests had been dropping. I just wasn't sick enough to justify the cost of PET scans. But, in the last few weeks my blood counts have been climbing. This justified authorization of PET scans, so that is what I got last week.

The PET scan day came - I went in at 6am, got the scan and then went on with my day just like any other day. The PET returned results I wasn't expecting. I was expecting nothing since that is what the CT had just shown. But, instead, the PET showed activity in my back where it has been before, but has been inactive for a long time. There are also a couple of new spots on my spine. Additionally, there are spots on my ribs on both sides. Finally, soft tissue has been compromised again with at least one lymph node in my stomach that is active.

(Active refers to the cells in each of these regions having a higher uptake of the tracer (radioactive glucose) than other areas. This increased uptake points out where the cancer is making itself at home.)

All those years ago when I was originally diagnosed with metastatic breast cancer they did a biopsy on my bone. The pathology showed the cancer was still hormone positive, but HER2-. (Original diagnosis was triple positive for those of you familiar with this) Now, with soft tissue involved again, we are going to get another biopsy. That is the silver lining of this storm cloud. I don't know if one result is better than another - it only matters that the tests are accurate and conclusive so we can make the most intellegent treatment decision.

Given that the cancer is back in my bones also I need to remember to talk to Dr. J about going back on a bone strengthening treatment regimine.

So, tomorrow I will have a biopsy. There is a lot of hoopla involved in any medical procedure. Arrive 1.5 hours early, wait around, be poked by a needle (at least a needle biopsy is what I am hoping for) and endure 30-45 minutes of waiting around until they will release you into the hands of a driver. So, local anesthetic and lots of waiting, but I can't drive myself tomorrow. This is my first medical procedure where I have not had my parents to drive me - first time, but not a big deal - thanks to my amazing friends. I am so thankful for good friends around me who make this all so easy.

Hoping for un uneventful procedure and highly accurate biopsy results.

The naked truth

2014-09-19T16:48:00.001-05:00

Here's the truth. It's raw and revealing. It also says a lot about how far I have come in managing the heartache and disappointment of my divorce and X's choices.

When I see cute videos of women with cancer telling their story with their husband by their side I feel sad. I wish I had a husband who stood by me through this. One who took some of the responsibility for everything life requires to help me bear this burden. One who loved me no matter what happened through chemo and surgery.

I look at the husbands in these videos and I think, don't screw this up. Be a man. Dig deep and become the man God expects you to become. Don't give up.

The good news, I believe that there are men out there who are good enough and selfless enough to be that kind of man, the kind of man I wish I had and I hope to have someday.

Toughest day in a while

2014-09-14T15:38:00.001-05:00

I am feeling more tired today than I have for a while now. Thursday was my second treatment of this cycle and it hit me almost immediately. I took a 5am run so it would be done before work and my treatment, and I am glad I did. By the time I got back to the office I was dragging myself through what felt like cement. I don't think I would have made it out that night. Friday was equally difficult when my alarm went off, but I managed to get up and going because of some important budget meetings at work. It's been good for me to have responsibilities at work that push me when I feel like lounging around.

Yesterday I was up early again taking care of some things in the garage before my men (a group of the kindest men from church who volunteered to help me out) came over to help move boxes and haul donations to good will. These men are amount my guardian angels. They are so wonderful to the girls and take care of us like family. It is amazing they all live so close to one another and to me. That is definitely a blessing from God.

The day didn't end before another run and a soccer game. I came home ready for bed pretty early, but feeling like it was a productive day. No wonder I am feeling it today. By noon today I hit another wall and have some nausea. I am so blessed to not have nausea every treatment anymore, and the times I do feel sick it is pretty mild, I almost don't need to take anything for it, but why make myself fight that feeling and fight cancer growth. That's just cruel punishment.

So I will let this little fella take half the battle. He's such a black/red it seems like he should be black cherry flavored.

Today is a day the kids will have run of the house and I am going to curl up for a quiet nap.

Tomorrow, I am taking Miss S to get the rest of a mole removed that is diagnosed precancerous and I will have the doc check another that concerns me. I don't know how much discomfort she will feel, so I have arranged to work from home tomorrow to take care of her if she needs. She will have a few weeks off from gym class. A much better recovery than letting it become skin cancer. I am so glad we caught it.

Remember, get an annual skin cancer screening.

There are so many things we should be tested for every year it really might be better to have all the doctors meet the patient at one place for annual exams than have patients schedule visit after visit.

Thank you to those praying for my blood tests to be accurate and conclusive and that the insurance company will authorize a PET scan. I appreciate having your faith to back me up.

Love, Kel

Blood Tests and PETs

2014-09-11T20:16:00.000-05:00

My CA27.29 is up 3 points again today. That is a tiny increase, but a trend none the less. So, today Dr J requested a repeat of that test through the regular lab as well as sending me to an outside lab. Having two separate tests from two separate blood draws will provide a comparison that can tell us if the regular lab is providing accurate results. I don't think we will see anything different, but it will rule out the concern that the test results are wrong.
And today I completed my 6th round of Havalen chemo. So, Dr J is also ordering a PET scan. 6 months ago the insurance denied the request for a PET because they felt I was not sick enough. Maybe so, but it made it so that we didn't have a recent baseline test to compare with. I have now had 2 CT& bone scan exams in place of the PET, both came back clean both times. But, the PET scan looks at your body in a different way.
So, while I am always praying for the miracle that my cancer will be gone and I can look forward to having some of my other dreams to life this week I would appreciate you praying with me for these specific blessings:
1. I am praying that the blood tests will be accurate and support each other. I want to know where we stand, and if both are the same(ish) then we can be sure that they are accurate. This will help us know what is happening and how we should move foward with treatment.
2. I am praying that the insurance will authorize a PET scan. Hopefully this will allow us a different look at things and help the Drs find whatever little cells are keeping me from being cured.

xoxo,
Kel

65 and baseball

2014-09-04T00:33:00.001-05:00

A long time ago I was asked what my dream car is. I answered anything that I own out-right. What a boring answer. Finally I have a good answer. It is a '65 mustang. I want either Tropical Turquoise or Twilight Turquoise Metallic and Palamino interior and while a convertible would be wild fun I might choose the fastback.

Wait, I would choose the tropical turquoise exterior on a convertible but the twilight on a fast back. The one thing I would demand is a good sound system and A/C. Then I would drive fast on a quiet two-lane highway with the music cranked up. I would be free out there - no stress, just me, my car, my diet coke and singing at the top of my lungs. I would visit New England in the fall, Padre in the summer for the turtle release and San Fran anytime. I would drive leisurely along the old Route 66 and not eat in a single chain restaurant along the way. That's the whole car dream, and it is a tantalizing vision.

What else have I figured out about myself? I like security. I am scared of risk and this was made clear again to me as I watched the Yankees play tonight.

I have been preparing for football season by getting to know the game and relearning everything Coach Jensen taught me in 7th grade PE which was long forgotten by 8th grade. The whys of this learning is for another post. But, having learned which channel is ESPN I land there sometimes now.

I tuned In to ESPN during the 6th inning. Yankees up 3-0 against the socks. Things are looking pretty ok. But, as soon as the red socks score I begin to feel panic. If they can score once then they can score again, then they only need one more to tie it up. And, just like that we are tied and risking the game. I don't want to watch them loose. I spent the rest of the next couple of innings reminding myself it won't change the orbital path of the earth of the Yankees loose.

Guess what, it isn't just sports. I hate it when the month and the bills match up. I need more money than month. I don't really like slow and steady progress in my cancer treatment. I want a big win followed by overwhelming evidence that I beat cancer. I like the Boy Scout motto, always be prepared. I like goals, checkpoints and check marks. And, I making a plan and working to the plan. I like to dig in and blow the timeline out of the water.

I llike to succeed, and the bigger the better. I like a challenge, but not a trial.

I wonder if articulating it will make any difference in how my life plays out. Probably not, maybe I should go back to my daydreaming about my dream car.

Drop in tumor marker and other progress

2014-08-28T20:52:00.001-05:00

A little over a week ago I got my latest CA27.29 tumor marker results and celebrated a nice drop of 14 points. Super great news after 3 tests with no change to speak of. It was a great bit of encouragement and maybe a little sign that my self-prescribed supportive therapy is helping. I have been narrowing my diet to some basic wholesome foods, increased my exercise and been working through a difficult forgiveness I have not been able to give completely.

I sort of curtailed my exercise when I made a crash landing when walking at 5am. I was unwise in using my right rib cage to stop the fall. Ouch! I wonder how this will impact next months tumor markers. Maybe it will give an indication about what is helping, but maybe not.

I have found the best supportive therapies are those that give me hope and make me feel like I am successfully killing my cancer. There really isn't a scientific answer as to why some bodies respond to treatment and some don't. It surely isn't because of the protocol or the patients desire to live. Similar protocols don't yield the same result. And, plenty of friends who have passed have wanted to live as much as I have. It's something else all together that has granted me the good years I have had and continue to have. I am grateful for this years. And, for my 3 Wild Angels I am spending the with!

Bone Scans and CTs

2014-08-14T12:47:00.001-05:00

As we wrap up another 3 treatment cycles (or 4 cycles in this case) I have gone through the next battery of internal photography. I used to take PET/CT scans, but about 6 months ago the insurance determined I wasn't very sick anymore and therefore should get less expensive testing. They are right - but I hate being told what to do.
So, I had my CT and bone scan before today's visit. I have come to a point where waiting on these test results don't leave me too anxious, but there is always something. As I posted on Facebook, I was 99% sure everything was going to come back fine. I save that 1% to protect my heart just incase.
The bone scan seemed good. There were a couple of suspecious spots on my left knee - this could be
from anything - trauma or something like that.

The CT scan showed a couple of lymphnode concerns. One that had increased from 8mm to 9mm and another that went from 8mm to 13mm. Dr J and I agreed that with my blood counts where they are there isn't anything to be worried about, but rather they have to tell us something in radiology or we will stop buying their expensive tests.
So - I am getting an x-ray of my knee today on the way out (it sounds like a fast errand, but we know it won't be fast) and we will continue with Halaven (the chemo I started several months ago) and just keep an eye on everything.
I am going to move forward with faith - believing this is just a small storm before the calm. A few new spots, some worries and challenges - then I will pound this cancer for good.

Waiting makes me stir crazy

2014-07-31T14:50:00.001-05:00

It's treatment day! And I have one Cheon complaint. The number of hours it takes and the number of times I have to move from chair to chair. I hate inefficiency and the whole afternoon is a long series of work-arounds.

I arrive and sign that I am here. I sit in the waiting room. They call me back to the registration desk so I can pay to be here. I sit in the waiting room. They call me back for lab work. I sit in the first chair - the vitals chair. I get up to get weighted. I sit in the vitals chair and they get my BP and temp. I wait. I move to the second chair- this is the chair were they access my port- much like a centr line. I wait. After sitting in chair 2 I walk back to the doxtors area and go to that triage room. Check-in. Move to the doctors consult room. WAIT. Meet with said doctor. Wait for lab results. Sit in an all-together new chair for chemo. Wait on labs some more. Then wait for the pre meds to be mixed. Get the IV started. When that finishes I wait for them to stop the beeping machine. Get chemo. Turn the IV back on for a flush. Wait for the nurse to remover the port access. Go to the check out deal and wAit to schedule the next appointment.

Finally I am paying for 4 hours of parking to cover 10 minutes with the dr. 30 minutes of IVs and 10 minutes of chemo.

I HATE INEFFICIENCY.