Chemo Through the Years (Hope is Very Much Alive!)

Both psychologically and practically it is interesting how a cancer patient’s attitude and approach to chemotherapy changes over the course of a “Cancer Career”.  That is a phrase that just popped into my mind recently… “Cancer Career”.  I am fast approaching the 5-year anniversary of my metastatic cancer diagnosis (June 4, 2012).  5 years, starting when I was 40 years old.  Considering that my adult life started when I was 22 (I know it legally started when I was 18 but I don’t know about you… but for me I find it hard to consider my undergraduate years really “adult life” – they were kind of adult life on training wheels!) That means I had 18 years of cancer-free adult life (from 22 to 40) and now 5 years as a cancer patient.  Basically an entire quarter of my adult life has been spent hand-in-hand with cancer, fighting to stay alive – that is a pretty big percentage!

I have written about the physical and psychological impacts of chemotherapy a number of times before – in fact many of my most popular historical posts have been on this topic.  I think they were so popular because fellow patients can all relate to the topic and many feel that I have distilled the complex feelings into writing in ways they couldn’t.

I think chemotherapy is a topic that by the rule of cancer blogging, everyone has to tackle – and retackle multiple times over time.  It is just too big a part of our lives.  But the way we approach chemotherapy does change as we go through the Cancer Career – as evidenced by some of my historical posts on the topic, listed below in chronological order:

TAKING THE LATEST TREATMENT PLUNGE (my very first post – it started it all! I started with “minimal chemotherapy” of 5-FU +Avastin)

IT’S A MARATHON NOT A SPRINT (a return to strong FOLFIRI chemo)

TIME TO TREAD SOME WATER (the strategy of strong chemo)

THE POWER OF STAGE IV CANCER HOPE (my all-time most popular post, the psychology of Hope in the midst of strong chemo)

IN CASE OF EMERGENCY, BREAK GLASS (Life via strong chemo)

I REALLY recommend new readers of this blog go back and read those historical posts, in order.  I think they are some of the best posts I have ever written and I bet you can find one that matches up with you current treatment situation to relate to… I think they are some of the best written because feelings on chemotherapy are so visceral… tangled up situations of hardship and survival… it doesn’t get any more hard hitting than that!  Chemo is very hard to endure but on the flip side… as I started this post: my “Cancer Career” is now almost 5 years old and I have chemotherapy to thank for much of that career length…

Do what you gotta do_2

Thinking about it this morning, here is the way I see how I approached chemotherapy pragmatically and psychologically over the course of my 5-year Cancer Career:

Phase 1: Stage 3C CRC (pre-blog) – Going for the chemo cure! Everyone rallies around Team Tom to make it through 6 months/(12) biweekly infusions of chemo. Twelve & done.  Then get on with my Life!  It felt like an almost impossible task but everything was focused on that goal – to make it through the (12) infusions… The “Team Tom Rally phase” of chemo.  I dreaded going to chemo but going for the cure made it all worth it!

Phase 2: Using the minimal amount & strength of chemo possible to control my disease – to preserve as much quality of life as possible.  A cure (via FDA approved therapies) no longer possible, a more solitary return to chemo – the start of a “pragmatic strategic use” of treatments.  The strategy was driven by the fact I had zero disease symptoms (running 20 miles a week even with lung tumors!).  Balancing the “here & now absence of noticeable disease” with the future… balancing quantity with quality… I dreaded going to chemo – and did it as little as medically possible.

Phase 3: Strong chemo is no longer an option, it is a necessity.  Still balancing quality of life but with the full realization that chemo was now an inescapable part of life… the “acceptance phase” of chemo.  Side effect worries are now slowly starting to recede into the background, as survival begins to take center stage… Chemo was a means to “tread water” as experimental immunotherapies became my #1 goal. I dreaded going to chemo but I accepted it… you gotta’ do what you gotta’ do…

Phase 4: Strong, continuous chemo is now an absolute necessity.  For life to continue.  Literally. Side effects are now ignored to my physical limits – the only factor I worry about now is literal survival.  Whatever it takes.  Disease symptoms (and not chemo side effects) are now what I worry about – they are the indicator if chemo is working.  I now LOOK FORWARD TO each chemo infusion – it is the only thing keeping me alive. It is the only thing that can reduce the significant symptoms of disease. Symptoms that are a constant reminder of how fragile my life is right now.

I am currently in Phase 4 of my Cancer Career as it started with my February post “IN CASE OF EMERGENCY, BREAK GLASS”…

Phase 4 Chemo Life

As briefly stated above, my Cancer Career took a sudden (frankly unexpected! Doh!) turn to the Phase 4 chemo stage in February.  Everything changed.  For the reasons stated above, I no longer dread chemo – I now look forward to it. My Life literally depends on it.

And most importantly… It is the only thing that if it works, re-opens up the possibility of returning to a potentially curative try at immunotherapy. THAT is the goal of my Life right now.  Life itself.

It is psychologically odd to now “look forward to chemo”… to embrace something that I treated for years as much as a foe as a friend – something that both would prolong my life but at the expense of making me feel like crap…

But all of that has changed now.  It is amazing how a near-term life-threatening situation changes your mindset!  Side effects can be managed.  Side effects can be tolerated.  Death?  Not so easily managed or tolerated!  People sometimes still ask me how the side effects of chemo are… to be honest now that I am in Phase 4 of my chemo Cancer Career – since my side effects are thankfully “tolerable”, that is a question/answer that I don’t think about. It is question/answer I don’t care about.  Side effects? They just are what they are.  The only thing I care about right now is: is the chemo working?  Are the disease symptoms reducing? Am I being backed away from the life-death cliff’s edge? Will I get a potentially curative immunotherapy shot??  All I want is a shot!

Scan Results Meme

PET-CT Scan: Thursday April 6

We’ll get our first diagnostic/objective clue to how the current chemo (+ Maraviroc 🙂 ) is working this Thursday when I have a PET-CT scan.  Is my liver getting closer to catastrophic failure?  Is it holding steady?  Is it moving towards safety? Those are the questions that consume my thoughts right now.  Not only are they important for literal sake but also they will determine my next therapeutic steps — including can I go for an immunotherapy curative attempt – and how soon can I??

I can tell you my guess but at the end of the day, it is the scan that matters… My guess?  I think the liver has gotten better.  Why?  Because my disease symptoms caused by liver disease (vomiting, extreme fatigue, zero appetite) have all improved. Woo-hoo!  I think the back lymph node tumors causing my pain have not responded.  Why?  Because my back pain has not improved.

So everything near-term comes down to the big scan on Thursday… I think my liver will show improvement but has it shown enough improvement to go for an immunotherapy curative attempt?? That is a big question that will only be answered by the scan.  Will I need an HAI pump?  That is a big question that will only be answered by the scan.  Am I still in a near-term life-threatening situation? That is a big question that will only be answered by the scan.

The Most Important Thing of All

The progress in MSS-CRC immunotherapies continues at a steady pace!  There are now small trial & anecdotal objective responses (tumor shrinkage) in MSS-CRC from multiple immunotherapy strategies. MSS-CRC immunotherapy treatment is a solvable problem and the clinical trial landscape continues to heat up (there have been at least twenty new immunotherapy trials opening up to MSS-CRC patients this winter!) HOPE IS VERY MUCH ALIVE!  If you need more info, I urge you to join the CRC Clinical Trial website I help run: the COLONTOWN CLINIC!

As my Cancer Career has matured – chemotherapy & I are now joined at the hip.  After dreading its use for years due to side effects, it is now my best friend. 

All I need is time.  All I need is an effective chemotherapy to buy me that time. All I need is a PET-CT scan result to show me that chemotherapy is buying me that time.

And Thursday is that scan. IF the scan results are good enough – watch out cancer, you will soon be hit with an immunotherapy blast that will make your head spin.

Stand back – hopefully with a good enough scan, things are about to get very interesting… But it all starts with a scan.

To Life!

-Tom

22 Comments on “Chemo Through the Years (Hope is Very Much Alive!)

  1. Cant wait to hear how the scan goes.I have a scan that day also. Fingers crossed for both of us…
    Thanks so much for your stories!!

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  2. Will be rooting for you on Thursday! Really hope it shows progress and gets you eligible for the immunotherapy trial, Tom.

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  3. Wishing you good results from Thursday Tom. You have an army of fellow patients pulling for you. 💕

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  4. I’m rooting for you, Tom!
    Your post reminded me of something I wrote when my own perspective on chemotherapy changed, “…the only thing worse than being on chemotherapy was not being able to tolerate chemotherapy, and thus being OFF chemotherapy.”
    Fingers crossed for Thursday–I hope they don’t make you wait too long for results!!! (You know me–I always ask for the CD of images before they even start the scan!)

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    • “…the only thing worse than being on chemotherapy was not being able to tolerate chemotherapy, and thus being OFF chemotherapy.” I LOVE that line Akasleen!!! 🙂

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  5. Sending good energy your way for Thursday’s scan. Jim Asbell and I are rooting for you!!!

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  6. Read your blog on FB..thanks Tom for your updates. I’ve been following your progress and your plan….break glass in case of emergency…Hope everything, especially the SCAN< goes well for you on APRIL 6…all my best..You're a beacon in an otherwise bleak,gray area of life…thank you and may GOD grant you the strength for a cure and the hope necessary to carry on….Best Regards Always, Tom Shelburne

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  7. Hey Tom…been following you since I too was diagnosed stage 4 in January this year at the age of 41. I’m currently an Acute Oncology Nurse Specialist and prior to that was a Cancer Research Nurse here in the UK. I’m hanging everything on hope I can get 5 years. Isn’t it funny how we barter? 5 years would see my son in university and my daughter to 18. I am waiting with baited breath my chance at immunotherapy! The clinical trial data although small us exciting! I’m currently on first line Folfiri plus Cetuximab and also I’m getting denosumab for bone mets. My pattern of development and spread is odd….circumferential sigmoid tumour….nodes from pelvis to ears in a long chain and numerous tiny pin point bone mets to pelvis, spine (sacral, lumbar and thoracic) and sternum. My worry is that due to my odd pattern of spread that I may be excluded from future trials. Fingers crossed this will not be the case. I’m an American citizen having moved to the uk in 1999. My bro is in Boston so I’ll follow your colon trials club in hope. Sending you and Team Tom every but if strength my chemo toxic butt can muster! I’m being scanned this week too to determine if im responding. I’ll do my ‘good results’ rain dance for us both!

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    • Laura, 20 years ago a dear friend (3c colon) showed up at our support group kicking herself. She’d bargained with God “just 5 years..” and it was her fifth anniversary. She was negotiating an extension. I don’t know what Mary Ellen promised, but she’s still cancer free. I know she didn’t have any distant mets, but still, I thought you’d get a kick out of it and wanted you to stay away from “the 5 year plan”. I was 40 at the time (solitary lung met from renal). I’m 60 now, heading to Austin on Friday to see my “cancer baby” who was born just before my diagnosis, 23 years ago. I just hoped to live long enough for him to form some memories of me. My junk is kicking me at the moment, but good or bad I find it best for me to just deal with today. I believe you’re a great blessing to each patient lucky enough to have you help them. Bill

      Liked by 1 person

  8. Tom, I hate that you have to endure this. I am 75, so it is different for me because death is a reality every day. May you be blessed with a good scan & I will pray to my God.

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  9. Tom, I am an ovarian cancer survivor living in Buenos Aires, Argentina.
    I want you to know how much your posts are for me. You became my “support group”.
    Thanks for your strength and empathy.
    I will be praying and thinking about you this Thursday 6. The best for you and your family.
    Hugs from my heart

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  10. What’s your cell growth rate? G1, 2,3,4? I don’t know how long since your last scan but just remember reasonable information from the scan will correlate to the growth scale and time. I’ve got a feeling things will turn much better for you, Good luck to you.

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  11. I’m joining your prayer group for a good scan!! I think of you almost everyday, you are my inspiration.
    btw I can’t find your interview, just a 30 second look…is there another link?

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  12. Why u dont forget clinical trial and go for a vaccine for eg under Prof bojar in germany?

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