On To Chemo
Originally sent as a mass email; now posted belatedly to the blog to catch those who wanted to know the full story up…
It’s been a while since I’ve updated you all about how I’m doing, and now that we have a slightly better sense of precisely what is going on and potential treatment options, I wanted to let you all know how I am and where things stand now. Once I begin the chemotherapy treatments, my hope is to send out updates every 4-6 weeks, just to let you all know how everything is going.
Before getting started, however, I wanted to take another opportunity to thank you all for all the love and support you’ve sent our way during these recent grueling weeks. One of the big reasons I’ve bounced back from surgery as well as I have is because of all the kind and sweet thoughts from everyone. The outpouring of support via emails, phone calls, cards, and assorted gifts has definitely given me strength; it’s always heartening to be reminded of just how many people out there care about me and are thinking of me. Meanwhile, my apologies for being so delinquent with responding to everyone who has been in touch or sent things our way — personalized thank yous, and not just a mass email, are coming soon, I promise.
Now, on to how things with regard to my health…
I’m now five weeks removed from the surgery, and I’ve recovered quite well. I’ve been walking around quite a bit, I’m no longer feeling much pain, and I’m back to an almost-regular diet. After spending far more time stuck indoors and in waiting rooms, I’m now able to get out and enjoy the lovely spring weather here in Arizona. While I’m still a little sore, and still getting used to the fact that I have 10.5” less colon than I did, as well as a colostomy, I must say that, all things considered, I’m doing quite well both physically and mentally. It was quite comforting and reassuring to be told by the assistant to the oncologist we saw last Thursday that I was looking good and recovering better than many patients she sees who’ve undergone similar surgeries, while also being told essentially the same thing by my home-care nurse.
We had a few visitors in town a couple weeks ago — a pair of friends from high school, Noto and Kyle, as well as my brother, Sourav — and I was able to do more than sit around the apartment with them, and managed to go out and walk a few miles around downtown Phoenix and also one of the parks around here with them. I’m definitely feeling much stronger than I was soon after surgery and have even managed to gain back more than half of the weight I lost in the weeks preceding surgery (thanks, milkshake and weight-gain protein bars). And I’m also feeling recovered enough to start heading to campus again and participate in classes; that was definitely something I’d been missing these last few weeks. After all, we moved out to Phoenix so I could get my PhD, not colon cancer, and it’s nice to be able to start returning to my usual schedule and have some semblance of a return to normalcy in my life.
Nevertheless, there is this pesky colon cancer issue we need to deal with. Though we didn’t expect this heading into the surgery, while under the knife the surgeon realized that the cancer had spread outside my colon. The original plan going in to surgery was for the surgeon to cut out the tumor in my colon, and then reattach the two remaining pieces of my colon and then I’d be on my merry way. Instead, during the surgery, the surgeon realized things had spread beyond just the localized tumor and that tumors were covering the outside of my lower colon and had also invaded the lining of my abdominal cavity, known as the peritoneum. The results of the biopsies the surgeon took while in there also revealed that a number of nearby lymph nodes were affected, as well. What this all means is that I’ve got Stage IV colon cancer. As a result, to deal with all this I’ll be undergoing chemotherapy for the near future.
However scary that all sounds, the good news is that the lungs and liver appear untouched, based on CT and PET imagery, as well as (in the case of the liver) visual inspection. Before we begin with treatment, though, the docs will run one further diagnostic: a triple-phase CT scan, which should provide slightly better resolution than the previous tests and give a better sense as to whether the liver has been affected yet. We’re keeping our fingers crossed that we won’t learn anything surprising from this latest scan, and that the cancer has indeed not yet metastasized to these (or any) other organs.
In any case, we begin with the treatment this week. We’ll be going down to Tucson every few weeks to receive treatment at the Arizona Cancer Center, part of the University of Arizona hospital system and the only National Cancer Institute-designated comprehensive cancer center in the state. We met with an oncologist here in Phoenix a couple weeks ago, and then traveled down to Tucson for a second opinion after that. What we found down there was an oncologist we both felt comfortable with, and a center with a far more holistic and inclusive approach, as well as numerous specialists with previous experience dealing with younger, non-standard patients with GI cancers. Overall, the team-driven approach of the cancer center is Tucson is one we felt especially comfortable with, and we are particularly attracted to the fact that they offer a full array of support services, from counseling to nutrition to massage to social work and patient advocacy. (Heather and I are both excited about the yoga and massage offered down there.) To us, it seemed well worth the regular trips to Tucson (about 2 hours away) to receive such top-notch, comprehensive care. Moreover, should it be needed, the possibility of enrolling in drug trials is also something that is easier in Tucson that it would be here.
So beginning this week, we’ll head down to Tucson for the first round of a treatment called XELOX. On Monday, I’ll receive the CT scan and also have a port catheter “installed” into a vein running under my right collarbone; it is through this port that all the IV chemo will be administered and blood will be drawn (which means no more getting stuck in the arm with needles, something I was quite relieved to learn since I’ve had my fair share of needle stabbings these past few weeks). Then, on Tuesday the chemotherapy begins. It’ll be about two hours or so of receiving the drip, and then I’ll follow that with a regimen of pills for two weeks, followed by an off-week, and then repeat the whole process all over again until things improve and hopefully the cancer recedes or goes into remission.
It’ll be a long battle and we’ll take this week-by-week and see how it goes, but we’re hopeful that things should go well. As I said before, the major organs seem to have been spared so far, I’m young, and I’m in good health — that puts me in a much better starting position than most people with the same diagnosis as me. While being realistic, we’re also very optimistic and hopeful. I feel good now, and we’ll just see where this takes us.
Another bit of good news is that the oncologist also said that he fully expects I’ll be able to continue with school, and my professors here have all been incredibly sympathetic, understanding, and willing to work with me so I can continue to participate. I’ve also been told that this particular chemo treatment tends to be pretty moderate in terms of tolerability (in that it shouldn’t cause the weakness of some treatments), and the oncologist said that I’ll hopefully be operating at around 70% of my normal strength and energy levels. Surely, there’ll be times when things might be a bit rough, but I’m committed to finishing the work I am passionate about and came here to do. We’ll also be meeting with a nutritionist on Tuesday, and we’ll be asking about an exercise plan, so hopefully we’ll be able to do our part to help put back what chemo takes out.
And lastly, as you would all expect, Heather has been absolutely amazing throughout all of this. She’s been my greatest source of support, as well as dealing with the inane drudgery of organizing all my appointments and medical information, and she has gone through everything so far with the utmost confidence, energy, and enthusiasm, which no doubt have helped me approach everything in as positive a manner as possible. Like I said in a previous message, this is not what Heather was probably ever envisioning when she agreed to those vows about sickness and health a little less than two years ago, but she’s handled this situation better than could ever be expected and is without a doubt a key reason I’ve managed to stay as positive and optimistic as I have.
Thanks again to all of you for your love and support, as well. As I go into this next step, knowing that I have such an amazing group of family and friends gives me more strength than I could ever put into words.