I haven’t written about cancer for a while because, let’s face it, life is short and there are better things to do than waste your time thinking about potentially fatal illnesses. There are books to read (I’m on my 30th so far this year), albums to listen to (I’ve racked up at least 219), new tattoos to acquire, and so many other endeavours worthy of my time. I pretty much only think about cancer when I run into someone I haven’t seen for a while and am asked for a recap and status update. Even as I stare in the mirror at this crazy new bedhead that has been appearing lately and fight the temptation to put the clippers into action once more, I don’t really reflect on the fact that cancer is the reason I shaved my head to begin with. I itched for a year and doped myself up with chemo for another six months, and yet I almost have a big blank spot in my memory where the lymphoma should be. For better or worse, I do remember everything from that period, so it’s not as though I’ve had some sort of protective selective memory shielding me; it’s just that I find cancer boring to ponder. I had it, I got treatment for it, I’m now in remission and hope to stay that way. Time to move on.
Or, I should say, almost time to move on. It feels wrong not to provide some closure to the cancer adventure, so here I am with a few last comments–a sort of eulogy for the lymphoma in order to bid it adieu.
I’d like to start with a few graphs that I whipped up to explore the changes in my blood work over the course of my treatment. I’ve been pondering whether it is narcissistic or just nerdy to create graphs from one’s own medical data, and all I can say is that you can take a girl out of academia but you can never take the academic out of the girl. It’s hard to say no to a good time series. Let’s start with haemoglobin, shall we?
Haemoglobin is the protein in your red blood cells that is responsible for transporting oxygen; anaemia is a condition that results when you have too few red blood cells, which is common in cancer patients for a variety of reasons. As you can see from my handy graph, there were a couple of times when I was nearly anaemic, but, overall, I was in pretty good shape throughout my treatment.
That doesn’t mean, however, that I didn’t keenly feel the loss of my friendly red blood cells. Lower haemoglobin levels can result in a faster heartbeat, shortness of breath, dizziness, fatigue, and difficulty engaging in athletic activities. I experienced all of those symptoms at various times, sometimes panting after just a few steps on a staircase or after summiting the tiniest of crests. I tried to distract myself from the struggle by imagining that I was an adventurer acclimating to altitude at an exotic base camp somewhere high in the mountains.
Leukocytes, otherwise known as white blood cells, are an integral part of the immune system, earning their keep by fighting off infection. Neutrophils are a particular type of leukocyte–the most abundant type, to be exact. The neutrophil count is derived from the leukocyte count, which is why the curves in the graph above mirror each other so closely; the neutrophil values are merely a percentage of the overall leukocyte numbers. As you might guess from the general pattern above, chemotherapy kills off white blood cells, which is why my counts drop precipitously after my first treatment and then rise exponentially after the last. I’m not sure about the cause of the increases and decreases in the middle, since I can’t think of why my white blood cells would rebound roughly every month despite the fact that I was getting chemotherapy every two weeks. Something to ask about at a future consultation (more on which below).
Having such low leukocyte levels–though mine didn’t ever fall too far below “healthy” levels–can result in an increased susceptibility to infection. For this reason, I was told to buy a thermometer so I could keep track of my temperature and immediately respond to a fever. There were signs all over the haematology clinics advising patients not to enter if they were ill (particularly with gastroenteritis), and I subsequently became the most obsessive-compulsive hand-washer that ever was. Despite being convinced that I would wind up catching every cold, flu, or gastrointestinal bug that made the rounds in my department at work, I actually never had a single transmitted illness during chemo. Go figure.
Platelets, or thrombocytes, are responsible for helping blood clot. My platelet count took a nosedive after the first chemo session and still hasn’t recovered. However, “normal” levels are anything from 150 to 450, so I’m not exactly in the danger zone. Having a lower platelet count can cause you to bleed for longer and bruise more easily, but I can’t really comment on whether I suffered these side effects because I don’t normally experience much bleeding or bruising except when prodded by phlebotomists and subjected to cannulization. *ahem*
All of these counts were done before each chemo session to ensure that I was healthy enough to receive treatment. Sometimes the levels drop so low that chemo can do more harm than “good” (it’s all relative here but you know what I mean), and a patient needs to reschedule. That never happened to me–in fact, my doctor told me that my values were frequently better than those of a normal, healthy person–but I did encounter some folks for whom this was a recurring problem.
I would be really interested in comparing the during-chemo data with the values from the blood work I had done prior to my diagnosis, as well as the readings I will continue to get every two months at my follow-up visits…
…which brings me to my second main point: where I am today. Several weeks after my final chemo session, I underwent a CT scan to look for any signs of rogue cancer cells hiding out in my lymph nodes (or anywhere else in my body, for that matter). The CT facilities in Truro were under construction and I hadn’t officially transferred to my new hospital in Devon after having moved to Exeter, so I had no choice but to take the train allllll the way from Exeter St David’s to Penzance so that I could be run through the scanner at the West Cornwall Hospital. The cherry on the top was that the hospital was, at that time, experiencing an outbreak of the norovirus, and patients were being advised not to visit unless absolutely necessary. Luckily, the adventure was worth it; the results showed what my doctor was anticipating, which was that I am in remission.
As much as I was ready to walk out of Treliske and never return, I was sad to say goodbye to Dr Forbes. He was everything you could ever ask of a doctor: charming, kind, funny, honest, intelligent, engaged, reassuring, patient, and just generally wonderful. What do you say to someone who could legitimately be described as having saved your life? How could “thank you” ever encapsulate the full extent of all that you are grateful for? We had an extremely short conversation and then I whisked out of his office, relieved but not surprised, hoping never to see the inside of the Royal Cornwall Hospital again but also wishing that didn’t mean that Dr Forbes was handing me over to someone new.
The handover itself involved a referral letter that triggered a series of other letters and phone calls that eventually resulted in my having a new consultant at the Royal Devon and Exeter Hospital. His name is Dr Claudius Rudin, who is no Dr Forbes but is still someone who suits my personality rather well. He was quite matter-of-fact and willing to discuss everything scientifically and in detail, which is exactly what my inquiring mind requires. He reiterated two things that Dr Forbes had already told me: 1) The follow-up visits are more for my mental health than anything else, since a recurrence is more likely to be detected by me than by blood tests or gland palpations; 2) If the cancer does come back, I’ll probably experience the same symptoms all over again, i.e., the dreaded itching.
Dr Rudin confirmed that the blood tests I get now are, statistically speaking, useless for making any sort of cancer-related diagnosis. This has actually been proven by research, but because haematologists are sadists, he’s going to have me continue to visit the phlebotomist anyway. Cruel. He also said that he’s quite the hands-off doctor and while he’s happy to answer any questions I have at any time, and investigate any symptoms that make me nervous, he’s equally happy to do the consultation over the phone or deviate from the every-two-moth schedule if my calendar dictates. Like Dr Forbes, he was referencing current literature left and right, and that makes me feel very good; I like people who know their stuff and communicate their knowledge plainly. Also, he’s very tall and Germanic, so he’s quite authoritative. You can’t not believe what he says.
I’ve saved the most important point for last. I wish I had an image to accompany this, but there was no way for me to get one because of photography restrictions inside the hospital. So I’ll give you two shots of chemo Caitlin instead:
Looking at my face–and particularly at my eyes–in those photos, you can see that chemo is not an easy thing. I felt calm and positive throughout my treatment, and I never once had a moment of doubt that I would reach the light at the end of the tunnel, but that doesn’t mean I enjoyed the trip through the darkness. Those are serious drugs with serious side effects, delivered in an unpleasant way to tackle an unpleasant condition. Other than finally having an excuse to shave one’s head, there is nothing good about having cancer and undergoing chemotherapy.
But that doesn’t mean there isn’t goodness to be found in the situation, and as amazing as Dr Forbes was, as unbelievably friendly and cheerful as the haematology clinic tea cart volunteers are, there is nobody on this earth who can compare to the haematology nurses. Those women are as near to saints as I think I will ever meet in my lifetime, and I simply do not have the words to describe what they meant to me, how indebted I am to them, and how inspirational they are.
Their faces are indelibly etched into my memory, as are the conversations we had during the endless poking and prodding and administration of drugs. We talked about Pilates, birding, deeper meanings of dreams, what it’s like to be an immigrant, British culture, places to go when visiting America…you name it, we covered it. They all learned my name and could greet me personally. They remembered where I liked to sit and which techniques worked best for getting my cannula in. They helped me count down to my final treatment and celebrated when they said goodbye on my last day.
I have been among their first patients in the morning, and was once their very last patient at night, and I can confirm that there is no point in between that they stop smiling or encouraging or caring or helping. They never have a moment’s rest; they sometimes receive abuse from grumpy patients; they have to deal with some of the most unpleasant of bodily functions; they often are trying to help patients that they know are dying despite their best efforts. It doesn’t matter. From the second they enter the ward to the second they leave, they give everything they have to make you feel better. I have never seen such selflessness or positivity in the face of adversity. They are truly remarkable.
I am not the sort of person who thinks that things happen for a reason, so I don’t think the cancer was sent my way to effect some great change in my life. However, there is a difference between something’s having an intrinsic meaning and something’s being found meaningful, and I will readily admit that I have indeed found meaning in this experience. It has shown that people can be kinder than you ever imagined. It has revealed that a positive attitude really can make a difference. It has proven that you truly can eat so much pizza that you lose your taste for it. It has demonstrated that if you write a book about flamingos, everyone you know will send you a get-well-soon card with a flamingo on it after you’re diagnosed with cancer. And, most importantly, it has confirmed the validity of Emily Dickinson’s great observation:
“That it will never come again is what makes life so sweet.”
So don’t waste time. Go out and live it while you can.