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)
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…
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!
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.