Summer of 2016

Let me begin by explaining that I had intended months ago to post to this blog on a regular basis.  This has been thwarted by the sheer difficulty of everyday life for us.  It takes everything we have to accomplish the most basic tasks and obligations; so much slips through our fingers.  I have hundreds of unread emails that I cannot get to.

Before the girls' school year ended last spring, we had a vision that our lives would somehow settle down a bit once everyone was home for the summer.  My health would be more predictable, we would catch up on a variety of projects, the girls would have ample downtime (while also engaging in enriching activities), we would all get plenty of sleep, and somehow life would settle into an easy, peaceful pattern.  Alas, this was not to be.  :)

I last posted to this blog when I was about to begin the third round of my CAPTEM oral chemotherapy regimen.  My second round had gone fairly smoothly, except for some unpleasant side effects during the final few days.  (The regimen involves me taking pills several times a day for two weeks.)  The third round was much like the second until the last few days, when I begin to have severe (and very bizarre) side effects.  One odd side effect that I've continued to have is that over the course of my two week regimen a very painful burning sensation develops in my chest with increases in my respiratory rate.  About a week into the cycle I start to have pain when I go on walks and with increases in my heart rate.  If I stop for a short time, the pain subsides, and I am able to continue slowly.  But it gets progressively worse, and by the end of the cycle I am completely bedridden, as even slight increases in respiration/heart rate (like getting up to get a drink of water) cause severe pain.  My oncologist believes this is caused by damage to the mucous membranes, although she has never seen it manifested this way.  This is rather unpleasant, but tolerable, and so far has gone away quickly after the cycle is complete.  

I also developed some more difficult side effects at the end of round three.  My body lost its ability to properly control temperature, so I would be freezing one minute, and then burning up the next.  Sometimes I would feel both at the same time, or would break out into a profuse cold sweat.  On more than one occasion I entered a building that was probably comfortably air conditioned to most people, but was so cold to me that I literally had to wrap myself in blankets.  If I stayed in a very hot environment or in a lightly air conditioned space I was typically quite comfortable, but switching between the two was excruciating. I also developed an overwhelming sense of depression.  Up until this point in my life, I don't think I have had nearly enough compassion for what those dealing with depression face on a day to day basis.  I went from feeling generally happy and upbeat one day, to feeling like I was being crushed by all the sorrows of the world the next.  Depression is serious business.  I experienced severe emotional fluctuations, and would dissolve into panic under stress.  Symptoms came on so quickly that I could clearly identify this as a side effect of the chemotherapy drugs, and not just the difficulties of life catching up with me -- but that didn't necessarily make it any easier.

Unfortunately these side effects stuck with me for much of the summer and our family had a couple of nasty bouts of cold and flu viruses.  Because of these two factors, the typical break between chemo cycles ended up being extended from two weeks to about two months to allow me to recover.  By the end of the summer, I was starting to feel at least somewhat like a normal human again, and was ready to get back on track with my treatments.

Although the summer was very difficult physically, we also had some incredible experiences, for which I am very grateful. Our toddler, Ruhi, had her first trip to the beach, and we went to Blacksburg for my 20th high school reunion.  Although no members of my own family live there anymore, Blacksburg still feels like home in a way that no other place ever has (or probably will).  This trip "home" affected me very deeply.  We were able to visit with friends that Mehrtash and I knew from our time living in Blacksburg as adults, and other friends and families from my childhood, some of whom I have known since birth.  I felt an incredibly profound sense of gratitude for all the people who have been with me through various stages in my life journey, and amazed and overwhelmed by how much love and support I continue to receive from them.

In addition to the high school reunion, we attended the 3rd Cherry Pinkstrong benefit concert in Blacksburg.  This event was special and moving in so many ways.  The concert has benefited several Blacksburg families from our childhood cohort that have been touched by cancer, including our own. We were so moved by the generosity and support we received from my hometown community, and it was wonderful to catch up with old friends and connect with others that understand this journey.  It was also a reminder that no one goes through life without difficulty and suffering.  I like to hope that we have all experienced great joys and triumphs along the way, but by the time you reach your late thirties, it's almost certain that you've also experienced great sorrow, difficulty, and loss.  Illness, death, divorce, infertility, financial insecurity -- we've all been through something.  In some ways, everyone has their own "cancer" story.

After the grueling side effects of chemo round three, we wanted to be absolutely sure we were on the right track with my treatments.  There were (and still are) several pieces of information about my case that just don't fit the puzzle.  Neuroendocrine cancer is a notoriously weird disease -- it can originate in a wide variety of places in the body, and symptoms can vary greatly from person to person.  So far my primary tumor is hiding.  We know where the cancer has spread (my lymph nodes), but not where it started.  We are uncertain whether it's fast growing or slow growing, as two different markers show conflicting results.  And my body seems to respond strangely to everything.  I've been able to learn a lot from some online support groups, and got a lot of encouragement to go see a true neuroendocrine specialist.  So in August we packed our bags and headed to Denver, Colorado to see one of the top specialists, Dr. Eric Liu.  Many friends contributed frequent flyer miles, hotel points, or funds to ease the financial burden of the trip, and we could not be more grateful to them.  Thank you so much to everyone that helped us (or offered to help us) in this way!

Our visit with Dr. Liu was well worth the trip.  He is incredibly personable (coincidentally, he is from Mehrtash's hometown and they attended the same elementary school), and really took the time to talk through my illness and treatments with me.  In some ways he confirmed what we already suspected -- that my case is just incredibly bizarre.  Before my diagnosis we were fully prepared for lymphoma.  I have a family history of lymphoma, the surgeon that performed my lymph node biopsy said that the tissue looked like lymphoma, and it shows up like lymphoma on a scan.  Neuroendocrine tumors are typically slow to respond to chemo, and the fact that I had substantial lymph node shrinkage after just two rounds also seemed odd to everyone involved (including the oncologist that had prescribed it).  Dr. Liu was concerned enough about this that he recommended a second biopsy, just to be sure we had the correct diagnosis and that I didn't have two types of cancer at the same time.  So I had a second biopsy, and somewhat to everyone's surprise, it confirmed the original diagnosis: just neuroendocrine cancer.

Dr. Liu's office is decorated with zebra paraphernalia given to him by patients.  Here's why:

"If you heard hoofbeats, what animal would you think of?  A horse, right?  It’s the most obvious answer.  Unfortunately, in the medical world not all diagnoses are "horses" (or the most likely possibility), and sometimes physicians need to look for the "zebra" (or the less likely scenario) when making a diagnosis.  In the cancer world, neuroendocrine tumors are the zebras.  Represented by this analogy because of their rarity, neuroendocrine tumors make up just 2% of nationally treated cancers."

(I edited the above quotation slightly; it is from the webpage of the Roswell Park Cancer Institute.)

Since the cancer in my body seems to be responding to the chemo, Dr. Liu recommended that I continue with it for the time being, and perhaps consider surgery down the road if I am still highly symptomatic (i.e., experiencing pain) once we've reached the maximum expected response from the chemo.  In some ways the idea of removing the cancer is appealing to me, but my medical oncologist worries it might be like looking for a needle in a haystack.  Since we can't find my primary tumor, clearly I have cancer that isn't showing up on scans... how do we find it?  My doctors believe it is hiding somewhere in my small intestine, because of the pattern of lymph node involvement, but everyone also seems to agree that my case just doesn't follow the expected norms.

After returning from Denver, I started my fourth round of chemo.  Same drugs, but a lower dose.  I still had the burning sensation in my chest with even minimal exertion, but no crushing depression and no crazy temperature or mood fluctuations.  I am now doing round five, with additional modifications.  Right now the plan is for me to do two more rounds on the reduced dosage, and then scan to see what is happening with the tumors.  If things look good at that point, we may switch to an even lower maintenance dose of chemo, and perhaps add another medication.  It feels good to finally have a plan that involves an end point, even if that end point is just a change, rather than a completion.

Although the summer was extremely difficult at times, I feel like it helped me face some important realities about myself and my life.  I've spent years neglecting many aspects of my health: not sleeping enough, not exercising, not making space for down time, not remembering to find joy in every day life.  I've spent a lot of time feeling like I can't keep up with my never-ending to-do list, and have sacrificed important elements of self-care as a result.  I spent too much time feeling overwhelmed by tasks, and not enough time living in accordance with my goals and values.  I wasn't unhappy, but my mind was always racing, always trying to keep up with what I needed to do next.  Even when I would pray or try to meditate, I never really let go of the stress of everyday life.  I resigned myself to the idea that I didn't have time for much self-care at this stage of life, and I think all of this contributed to my illness.

On the way back from Denver I began reading a book called "Radical Remission", which has been a total game changer for me.  This book looks at people that have been able to beat cancer "against the odds", either without the use of conventional medicine, or making use of alternate methods after conventional medicine had failed to stop their disease, or using conventional medicine along with alternative treatment to survive and thrive after receiving a fatal diagnosis.  The author looked into what these people did to bring about their "radical remission", and describes the top nine traits that she identified pretty much everyone having in common.  The book has a lot of stories, and I am able to see so much of myself in the experiences of the other cancer patients.  It's helped me realize that I have some big changes and sacrifices to make if I want to heal, and has finally helped me feel like I am on the right path to regaining my health.

I hope to post another update with more news about some current challenges and what I am trying to do to heal soon!  In the meantime, here are a few pictures from our summer adventures.

Wrightsville Beach!

Bradley Birthing Class Babies.

Carol Lee's in Blacksburg - still the best donuts ever.

Carey to the rescue!  We would not have survived the summer without Carey's help!

Taking in the mountains outside of Denver.

The five of us in our highly neglected yard.

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