The Joy of Cancer Survival

[Daniel W.Participant]

One sunny day in March 2012, after rototilling the garden, I developed a strange, severe abdominal pain so profound I could not remain upright.  That pain was so new to my experience, I was certain it was life changing, if not life ending.  The ER doctor diagnosed an incurable type of gastric sarcoma, a variation that occurs in about 6 out of a million people.  The tumor was the size of an extra large Idaho Russet potato.  The oncologist knew so little about this cancer, he used a doctor wikipedia-like program to plan treatment, and muddled along badly.

 

It turned out, new drugs had been developed for a more common cancer, that occurrs with the same mutation but in different cell lines, as in my silent, malevalent companion.  The new drugs often stop my cancer from growing and spreading, but unlike chemotherapy and radiation therapies that have no effect, this drug must be taken every day for life.  The main toxicities are aches, pains, fatigue, poor healing, and slowed thinking with forgetfulness.  I have them all, but learn to manage anyway.  The cost to my health plan was $130,000 per year.  They objected to long term treatment.

 

Fast forward, I found a subspecialist research oncologist at a local research and medical university cancer center, who had affordable visits, and an oncologist at my health plan who would listen to him and prescribe appropriately.  I was able to tough it out for 3 more, difficult, sometimes unbearable, years, for early retirement with reduced pension but full medical.  There has been no cancer recurrence.  I studied ideas of secular – atheist – Buddism – no gods or woo woo – to accept loss and attachment to ephemeral things, and be more humble in expectations, accept death and appreciate life.  At times, it’s been a rough trek, but I am happier than I’ve been in years.  I consciously cultivate joy and happiness, wonder and awe.  There are no illusions about life expectency, so I live each day appreciating the simple, good things in life. I should have died, years ago. But here I am!   I try to give joy and wonder to others.  It can be difficult, and at times I stopped contact with dysfunctional obsessed negativists, Debbie Downers and Gloomy Guses, and negativist social media.   I found new friendship and redefined my primary relationship, an ongoing process.

 

I’m amazed at my good fortune, to have this cancer when there is treatment, to have been able to hold on for medical to cover the cost, to find someone no only competent but actually expert, and affordable, to have a mutation that responds to this drug – many don’t – to have good hearted people around, and to have a home and garden and friendship that give me no end of joy.

 

If not for this incurable cancer, I would still be drudging along in a dysfunctional workplace, unhappily powering through my days in mindnuming stubborness on a hamster-wheel of misery.

 

I am filled with gratitude and wonder.

 

 

[.Spectator]

I’m happy for you @danielw ! That is awesome that you’ve overcome, and survived. Cancer is tough stuff. One of my fathers is diagnosed with stage 4 right now…it’s really sad. And I worry about him a lot. Do you have a lot of supportive family and friends?

[Daniel W.Participant]

Belle, I’m sorry to hear about you father.  Cancer is a cafeteria of diseases, with many causes, many prognoses, many treatments, all different.  I wound up googling on mine, joined an online group, went to annual patient advocacy summits.  It was there that I found expert advice from patients and the handful of experts who specialize in my mutation.  They led me to the subspecialist oncologist who I have to pay out of pocket to see, but it is worth it and suprisingly affordable.  My workplace was mostly the opposite of supportive, which is why I took early retirement. I grieved about the loss of work, which was important to my sense of self, but  I feel so fortunate that I was able to do that.

My marriage relationship is unusual and complicated but supportive.  I am an introvert and have very few, but close, friends, which is OK.  Some times I step back from the support group, because there are many deaths and treatment failures, and a lot of “I’ll pray for you”.  My elderly dog gives me love and companionship, a silent watch over me and trusting friendship.

 

I hope your father does well, or as well as possible.  With advanced cancers, we all know we might die of the disease, and in some cases very soon.  For me, I decided it is OK and normal if I die soon, and I let go of the need to live.  Instead, make sure those who I care about are OK.  I concentrated on bringing joy and comfort to the handful of people – and dog –  around me.  That gave/gives me purpose.  It seems strange, but accepting mortality might be part of why I have done so well.

[JadeBlackOliveParticipant]

Glad to see you Daniel. Miss you on a/n.

Patricia

[Daniel W.Participant]

Thank you Jade! Hope to see you on here some more.

[JadeBlackOliveParticipant]

Daniel,

I find this site harder to use than the old one, but hopefully I can post things that I want to.

I also took a lot of your garden tips from a/n to pass onto my husband. He’s beginning to get itchy to get started this year, so hopefully wildfires don’t interfere again this time.

[mikelansingParticipant]

Hi Daniel,

 

On the Retina thread you mentioned detachment. Is the condition a retinoschisis, or X-linked?

What is the clinical name of the sarcoma and which mutation is it?

My particular cancer is basal cell carcinoma, though an eight-month period was spent thinking that the lesion on my back was cutaneous melanoma, indeed a brush up against PTSD and psychosis.

Regards,

Mike

 

 

 

[Daniel W.Participant]

Mike,

I’m guessing the retinal detachment was idiopathic, but may be related to long term use of tyrosine kinase inhibiter, imatinab.  I seem to have a lot more connective tissue issues, but everything has a cost.

I have a type of gastrointestinal stromal tumor that arises in the interstitial cells of Cajal.  the mutation is Exon-11 and affects tyrosine kinase, making cells malignant.

[mikelansingParticipant]

The retina does link to imatinib:

Imatinib / Retinal Involvement

http://www.ncbi.nlm.nih.gov/pubmed/27437258

Imatinib stretched out, is N-(4-methyl-3-(4-(pyridin-3-yl)-pyridin-2-ylamino)phenyl)-4-((4-methyl piperazin-1-yl) methyl) benzamide methanesulfonate.

 

Once one sees the pyridine moieties, one knows that it links to Blast Crisis and interferon-alpha treatment. Moreover, the tyrosine mutation links to melanoma and pigment cell cancer, because tyrosine is a major limiting factor in melanin synthesis. Once one has the name stretched out thus, they can plumb the mysteries of pharmacodynamics more efficiently.

[StregaModerator]

@danielw I completely understand how accepting mortality frees the mind from anxiety 🙂

[Reg the Fronkey FarmerModerator]

There is a beauty and serenity to be found in reading Christopher Hitchens book, Mortality which he wrote about his relationship with cancer as he moved from Wellville to Tumortown. It is the little thoughts and asides that will inspire you.

So when you get the book and the house is silent, pour yourself a champion’s breakfast and read it as he remembers his life and his friends as you listen to a song or two he was discovering, like I now just have.

I wept as I remember’d how often you and I
 Had tired the sun with talking and sent him down the sky.

Accepting ones own mortality is the key to living life to the full. You don’t miss out on much when you do.

[Daniel W.Participant]

@strega, thanks.  I think there are lots of ways to respond to a brush with death.  It seems to me, one way to do it is with gratitude, introspection, and to remember that when we are gone, it is no longer about us?  It’s about the people who remain.  So we should try to help them be happy, and set a positive example.

@regthefronkeyfarmer, thanks for the Hitchens article. It was an enjoyable read.  And the book reference and youtube links.

• This reply was modified 6 years, 7 months ago by  Daniel W..

[mikelansingParticipant]

The brush up against psychosis was in 1988 and included suicidal thoughts coupled to a stress-related phenomenon Hispanics call “bossio,” whereby the throat (thymus) swells up, constricting breathing. This also occurred at birth, when the thymus was irradiated to shrink the swelling. Thus, there is a group of people who had childhood irradiation, which questions the two-hit hypothesis of cancer.

 

The thymus is where lymphocytes are produced, and the basal cell carcinoma links precisely to my immunity against the urushiol of Rhus toxicodendron (poison ivy). Euell Gibbons also remarked that Canadian lumberjacks ate young spring leaves of R. toxicondendron to develop immunity against it as the season progressed. The latter technique comes with its cautions.

 

On another note, since we have linked tyrosine to melanoma, tanning bed use is up for discussion, having recently finished reading Travis Ruhland’s Caring for Kait.

 

Thanks for the citation of the book, Mortality, we look forward to reading it. Another important text along these lines is Haegglund, Radical Atheism: Derrida and the Time of Life.

[Author]

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