Monday, June 13, 2016

Returning to Life


“The question of the Meaning of Life is not edifying.  Immerse yourself in the River of Life, and allow the question to float away...”

-The Buddha

Hello friends,

You have not heard from me for a while, and I hope this finds you well.  I’ve been through an ordeal this past year, it’s time to talk about it.  A few already know about this, but most of you - even many friends who I just don’t talk with on a regular basis - will be learning this for the first time. Hearing it directly from me would've been better, but throughout this I’ve felt the need to conserve my energy and focus on positive action rather than conversation.

A year ago I began having some worrying gastrointestinal symptoms; intense cramping, blood in the stool, etc., and a general sense that my vital energy was diminishing.  My doctor referred me to a gastroenterologist, but there was no particular urgency, as every medical professional I discussed the symptoms with thought it was probably a bacterial infection related to some recent antibiotic use for an infected tooth.  Given my relatively young age and otherwise excellent health, nothing more serious was suspected.  

The gastroenterologist did suggest a colonoscopy to rule out other causes, and I thought that was a good idea.  That procedure was done towards the end of July, and as I was coming out of the anaesthesia, the doctor told me that to his shock he’d found a large tumor in my colon, and that it was almost certainly cancerous.  A biopsy confirmed this, and a surgery to remove it was scheduled for the middle of August.  At this point, the surgeon told me that the procedure would likely be curative; the tumor would be removed and that would be the end of the matter.

It was a major surgery requiring the removal of nearly one foot of my colon, and 4 days of hospitalization.  It was a complete success and my recovery was swift and easy; within 9 days I was walking a full mile.  However, scans taken right before the operation revealed what appeared to be several lesions on my liver, and another biopsy confirmed that the cancer had spread to my liver, making it Stage 4 and a grave, life-threatening situation.

Boston has some of the finest healthcare institutions, period.  After getting a few second opinions, I decided to transfer my care to the Dana Farber Cancer Institute, which is one of the predominant cancer treatment facilities in the world.  The recommendation was for 12 sessions of chemo spread over 6 months to shrink the tumors, and after that a surgery to remove the affected part of my liver.  At this point they were talking about removing 50% of the organ, and it was by no means guaranteed that I'd be able to get to the point of having that surgery; my oncologist gave me a 10% chance of making it, and I felt from his tone and body language that he was probably being optimistic.

I also made a decision to incorporate several complementary therapies alongside the traditional approach.  Absolute scientific proof that these therapies worked was not required; as long as it was unlikely to harm me, and there was *some* formal study suggesting effectiveness, I was open to trying it.  I believe one of these was an important part of my treatment; more on that later.

I began chemo in October.  It involved spending an entire day at the clinic once every two weeks; first lab work, then appointments with my oncologists, then several hours receiving an infusion of the drugs.  One of the drugs required a longer administration; for 48 hours following each infusion, I had to wear a pump that gave me a slow steady drip of the medicine.

Every two weeks I would see many of the same people in the waiting rooms, and often enough they were slipping.  Sometimes the decline would be shocking.  I remember one gentleman - I never spoke to him, but I would see him across the room talking with his wife.  At Halloween he was robust and strong, by Thanksgiving he was a ghost in a wheelchair, and after that I never saw him again.   More than anything else, it was he who taught me the gravity of the place I was in, and how genuinely fragile I am.

At the beginning of this process, they described for me the possible side-effects of the chemo, which was a truly fearful list; some of the side effects seemed as bad as the cancer itself.  Fortunately, I experienced almost none of them, at least the particularly disturbing ones.  Fatigue, odd changes to my appetite, and neuropathies (pain and tingling caused by nerve damage) were the worst effects I felt, and even these were fairly mild and temporary.

I made a decision early on that I wasn't going to approach this as a fight or battle.  It's a common metaphor cancer patients use to describe what they're going through, but for me it wasn’t helpful.  The mindset of fighting involves anger, hatred, and stress, none of which would improve my outcome, or make day-to-day living with the cancer any easier.  I simply chose to view it as a natural bodily process just like any other natural bodily process, and as a result I experienced very little of the terror and anxiety so common with this type of diagnosis.  Also, I’ve been through cancer before; in 2010 I was treated for melanoma.  It was found at an early stage so it was medically nowhere nearly as serious as this, but I experienced a very great deal of terror and anxiety then.  That was good, since I got it out of my system and was able to face this much more dangerous situation with a calmer head.

My progress was not steady.  By November, the scan showed an increase in the number of tumors from 4 to 6.  They were, however, less dense than before.  My oncologist took that as a good sign, along with the fact that my vitality and energy were returning to levels I hadn't enjoyed for years, when I should have been feeling gradually worse.  I would feel down for the first few days after each chemo session, but after that I felt pretty much the way I felt before this all began.  I told my doctor that I didn't feel like a sick person, and in a clear and simple tone he replied “You're not.”.  Hearing him say that with such conviction was a real turning point for me.

I'd always heard that people who work with cancer patients are a special type, and that is unquestionably true.  From the doctors to the volunteer clinic assistants, all my caregivers brought a depth of compassion and humanity to the process that still moves me, in particular my regular oncology nurse who gave me my chemo infusions.  Others may have had more absolute responsibility for my care, but I considered him to be my real guide through this process.  He was the one I could talk to about what living with cancer was like, and many of the things he said to me were important truths that carried beyond this immediate situation.  I’m grateful to him and everyone else who helped me through this.

The scan at the end of January showed excellent results, and it was becoming clear that I was having an exceptional response to the therapies.  5 of the 6 tumors were no longer detectable, and the remaining one was diminished.  I'd completed 8 of the 12 sessions of chemo, and my medical team felt it was time to suspend the chemo and move forward with the operation on my liver, with the 4 remaining rounds of chemo to be completed after recovery from the surgery.  It was obviously not what my oncologist was expecting - there was a poignant moment during this appointment when he stopped talking, looked hard at me, then shook his head and smiled for a long, long time.  In fact he did it twice during that appointment.

I want to say a few words about one of the complementary therapies that I used - medical cannabis - which fortunately is legal in Massachusetts.  It’s now widely accepted that it helps to reduce the side-effects of chemo.  It also appears quite likely that several of the compounds in cannabis - known as cannabinoids - have direct anti-cancer properties in their own right.  Cannabis prohibition has made genuine scientific research difficult.  In fact, although some individual US states permit its use, federal law still considers cannabis to have no medical value whatsoever and to be actually more dangerous than crystal methamphetamine or cocaine.  This is patently ridiculous and long overdue for a change.  What studies have been done are intriguing, and as restrictions ease, more research is going forward, particularly outside the US.  

There is also a substantial body of anecdotal evidence - which isn’t science, but can’t be completely ignored either.  You don’t have to look far online to find people claiming that cannabis cured their cancer.  I don’t go that far; it’s probably more complicated than that.  But, I can say for certain that it helped reduce the burden of the chemo; it affected me lightly when others all around me were suffering terribly from it.  I also strongly suspect that the cannabinoids worked synergistically with the chemo to deliver a better response. I can’t prove it, but I don’t need to… something I did gave me an unusual and unexpected result, and I would do everything exactly the same if required.  

I took the cannabis in the form of oil-based extracts that I prepared myself using raw material from the state dispensaries, and would then ingest it in capsules several times a day.  Although my body was flooded with more weed than most college students could dream of, I developed a tolerance to the high pretty quickly, and was able to function normally, though I would avoid driving and using power tools while medicated.  If anybody reading this wants more information about this treatment for themselves or somebody close to them, please feel free to contact me to discuss the technical details of the preparations and the strains and dosages that I used.  I can’t offer medical advice, but I can freely share what I did to take care of myself.

I openly discussed this with my whole medical team from the start.  One doctor was enthusiastically supportive, and the rest felt that it was unlikely to interfere with my other treatments, so… go for it.  I’ve since talked with several other patients whose doctors were considerably less open-minded on the subject, so I’m once again grateful for the team I had.  While I personally support full legalization of cannabis for responsible adult use, that’s more political than I need to be in this forum.  However, I would ask that people who live in states with complete prohibition consider supporting cannabis for medical use.  It truly reduces suffering during what is the most difficult time in many people’s lives, and may in fact contribute to healing in ways not yet fully understood.

My second surgery was scheduled for mid-February.  By this point, the surgeon anticipated removing 15% of my liver, far less than the original 50% estimate.  Nevertheless, he still told me to expect a longer and more difficult recovery, as this was a more extensive operation than the previous one.  This surgery was just fine as well.  It also involved 4 days in the hospital and a long slow recuperation that turned out to be quick and fast.  Just like before, within 9 days of the operation I was out walking a full mile.

This time the post-surgery news was all good.  The surgeon only needed to remove 10% of my liver, and a close inspection he made showed no further signs of disease.  Pathology done on the one remaining tumor that he removed showed it to be completely dead; it would've eventually been reabsorbed by my body like the other ones.  My oncologist and I also had a long talk about whether to complete the remaining 4 rounds of chemo.  He could not be certain that it was necessary given my previous response.  Also, the chemo drugs are highly toxic, and their effects can be cumulative; people can tolerate 10 rounds and then have devastating side effects with the 11th round, for instance.  In October, the long-term toxicity of the chemo seemed like a luxury problem, but by February it was a serious consideration.  Rather than continuing to roll those dice - even with the cannabis therapy -  we decided it would be best to hold off in case I truly need it in the future.

Oddly enough, after my surgery I fell into a low-grade depression of sorts.  I’d spent half a year preparing myself to die, and when it became clear that was unlikely to happen soon, I found myself looking around and asking what I could, should, or wanted to do with myself.   Mentally and emotionally I also needed time to just restore balance after the drain and intensity of the previous 6 months.  It was hardly a debilitating depression, but I spent much more time with my Netflix queue and bags of Doritos than I probably should have.  I also spent a fair amount of time trying to make some sense of this; what it all meant and so forth, which - if I’d bothered to read the quote at the beginning of this article - I would’ve known was pointless.  Ultimately, the only thing left to do with life is to dive in and get on with it, and that’s where I am.

So… things as they stand now.  At the moment, I am completely and absolutely fine; I feel much the same as I did 20 years ago.  The cancer is in full remission with no sign of the disease.  I am at high risk for a recurrence, so for the next several years I will be under active observation.  This involves regular exams and scans; an MRI coming up in about a month will be an important signpost as to how I'm doing.  Nobody is using the word “cure’, and I certainly do not assume this is totally behind me.  But right now, everything is good, which really is all any of us can say for sure.

In a way, it's almost as if none of this ever happened, physically at least.  I have no limitations or restrictions, and aside from several scars, there's no outward sign that anything happened.  The only things my doctors suggested are to eat well (Doritos are back to a once-a-month treat now), sleep well, exercise 45 minutes a day, and drink plenty of coffee.  Seriously - coffee - it substantially reduces the risk of colon cancer recurrence, and that’s real science, not internet science.  Throughout this experience, I never stopped painting, but I did so at a slower rate, and I did a fair amount of work that is just for myself.  I’m happy to say I’m back in the studio with energy and vigor, and I’ll begin showing you new paintings shortly.

Being sick has its own poetry; it accentuates life if you know how to look at it.   My inner state took on a depth and fire I've never experienced before.  Old, familiar things became vivid and fresh, like I was seeing them for the first time.  There’s a real power in doing something you enjoy and knowing in your bones that you may never have the chance to do so again.  Shortly after the initial diagnosis, I began walking daily outside unless heavy snow or rain made it impossible.  I developed a strong connection to the coming and going of the weather and the flow of the seasons, as if I was renewing a friendship with the Earth that was dormant most of my life.  I found myself living more richly and completely than I was ever able to before, and I came to find a sense of harmony and contentment in Death’s waiting room that was a welcome surprise.  I will be there again some day, and hopefully that will be a graceful experience as well.

I probably would not say I enjoyed nearly dying from cancer, but I have come to embrace and treasure the experience, and I know in my heart that it has made me a better person in every single way I can think of.

Like the man said, “Immerse yourself in the River of Life…”

40 comments:

Peggy Conrad said...

A wonderful story, beautifully told, with a great ending. I am one of your followers but also a cancer genetic counselor with experience in colon cancer. Hopefully your caregivers at DFCC reviewed your family history. I don't know how old you are, but young age of onset colon can be a sign of an inherited gene predisposing you to cancer. Keep painting. I love your work and will share your story of hope with others.

techtime said...

I was thinking about you this weekend. Marie and I are happy your doing well. I wanted to talk to you about a few projects. When you are up to it,please give me a call. Joe Narkawicz 413-221-9508

techtime said...

Welcome back Jeff. Give me a call when you feel like it time to do a project. Best of everything to you .Joe Narkawicz

Steve said...

Jeffrey, We've never met, I'm simply someone who is on your email list to receive news of your painting. I clicked on the link to your blog post about your cancer experience. You have articulated some important truths; primarily the wisdom of working with the reality of cancer without framing the experience as a fight or battle. Keeping anger and hatred out of the process is inherently healing on some level. My late wife had lymphoma for 12 years. While we obviously would have preferred to skip the experience -- most of all, her death -- there was unexpected treasure in it all. Being shocked into truly cherishing the preciousness of each day, living life more vividly, was deeply valuable. You expressed it all very well. I hope your scans continue to show you to be cancer-free. I hope you live and paint a good long while from the deeper place this experience took you.

Jana said...

Welcome Back Jeffrey. What a positive outlook you have. I'm sure your attitude was very helpful with your recovery, and am wishing you future health and happiness as you continue your painting career!

Diane Hoeptner said...

Wow, wow, wow. Thank you for sharing this incredible account of your recovery Jeffrey. I wish you continued health and many more happy hours in the studio. Can't wait to see the new work.

Kelley Carey MacDonald said...

Grateful to have you back. Thank you so much for sharing!

Jeffrey Hayes said...

Thank you Kelley!

Jeffrey Hayes said...

Thanks Diane!

Jeffrey Hayes said...

Thank you Jana!

Jeffrey Hayes said...

Thanks Steve, and thanks for sharing your experiences with your wife. I wish you all the best. -Jeff

Jeffrey Hayes said...

Thanks Joe - I'll be in touch this week. -Jeff

Jeffrey Hayes said...

Thank you Peggy, and thanks for sharing that information. There was quite a lot of discussion of my family history throughout this process. Best wishes, Jeff

paulthea said...

Thank you for your inspirational story. I have a friend going through this right now, and you gave me hope ... and a brand new perspective. Thank you!!

k. Madison Moore said...

Hi Jeff, I am so sorry to hear that you had to endure all of this. I am happy to hear that you are doing better. I do believe that the Cannabis helped. I am a true believer. Getting back to painting will also be good therapy for you. I wish you the best. - Madison

Jeanette Jobson said...

From one painter to another, every good wish for good health and wonderful paintings into the future.

Elizabeth Tucker said...

Wow......I am so happy you are well. Your story is so poetic, as is your art. I've been following you for years and missed you for the last many months. I'm glad you are back and well.

Torrie Smiley said...

So glad you are back! Best wishes for many happy years of painting ~

Anonymous said...

Wow, what a wonderful outcome! Thank you so much for sharing your story! It's great to know about cannabis, I had no idea! Stay well, stay strong! Theresa Miller

Jeffrey Hayes said...

Thank you Theresa!

Jeffrey Hayes said...

Thank you Paul - best wishes for your friend.

Jeffrey Hayes said...

Thank you Madison, it is an amazing plant.

Jeffrey Hayes said...

Thanks so much Jeanette - best to you as well

Jeffrey Hayes said...

Thanks Elizabeth - it's great to be on my feet again.

Jeffrey Hayes said...

Thanks Torrie!

Eileen Burgess said...

Jeffrey, what an incredible story; thanks for sharing it. I totally relate having gone through chemo and radiation for endometrial and breast cancer. Support from friends and family and focusing on painting kept me going. I will keep you in my thoughts. Your artwork is outstanding and I look forward to seeing new work. Hang in!

Eileen Burgess

Jeffrey Hayes said...

Thanks Eileen - I wish you continued great health!
Jeff

Joanne Giesbrecht said...

Jeff, I am so blessed that you shared this major event in your life. with such grace and humility. Most of the time, people have no idea what struggles another person is experiencing. Most of the time, people have a skewed perspective on what is truly important. Thank you for sharing about your journey, and how precious life is - each and every day.

Jeffrey Hayes said...

Thank you Joanne - I truly appreciate that

Catherine said...

Jeff,
Thank you for sharing your story. I am a fellow artist and follower of your work who is inspired by your journey. I will be painting today, feeling even more grateful for the opportunity to do so. I wish you all the best with each preious day.

Carolyn said...
This comment has been removed by the author.
Jeffrey Hayes said...

Hi Catherine - thanks so much - I second that sentiment :)

Jeffrey Hayes said...

Hi Carolyn,

Thanks for sharing your story. I am very happy to hear about your continued good health, and I wish you all the best for the future!

Jeff

jeanpierre walter said...

Very happy to see you coming back. But you know, you were already a very good person before this terrific new experiment. Sorry for my English.

Take care.

Anonymous said...

So glad last year is behind you and you are doing well now. I look forward to seeing more of your work... You are an amazing artist, but more than that your continued good health! I praise the Lord you have come though this ordeal and ready to tackle life with gusto once again!
Dottie... Just one of your many admirers. 😊

Jeffrey Hayes said...

Thank you very, very much, Jean-Pierre
My best always, Jeff

Jeffrey Hayes said...

Thank you Dottie - I truly appreciate that.
Best wishes, Jeff

Tom Hart said...

I'm an infrequent visitor to your blog, but I always find artistic inspiration and sustenance here. Now I have found inspiration of another kind. Thank you for generously sharing your experience. I'm glad you are doing well. Continued good health and happiness.

Jeffrey Hayes said...

Thank you Tom!

LISA A. ZOOK said...

Hi Jeffrey, thank you for writing and sharing your experience. I am also learning about my Stage 4 Colon Cancer with Mets to Liver. I do have some prescribed Marinol. I'm in Ohio. After my surgery last July,a removal of a Fist-sized Cecal Tumor, 18" of Colon and 30 lymph nodes I began Chemo Oct. 3rd. Complete Remission after 3-4 Treatments but finished 6. Kept me on Avastin for maintenance. After 2-3 months 10 small liver tumors and groin lymph nodes returned. So doing a second chemo- Avastin, Irinotecan & Xeloda. My Oncologist has ordered Genetic Testing now. Did you have that Testing as well? Congratulations on your thoroughly enjoyed Gift of Remission. Beautiful!- Lisa