Breathing Room

It’s been a while since I sent out a mass update. I suspect - and hope - that most of you have assumed that no news is good news. I have been relatively healthy, and very busy, in the best way. I have been working hard to keep up with my first semester of PhD work here at the University of Illinois, and trying not to mess up my lovely and assiduous fiancee’s efforts to plan our wedding, and taken charge of our honeymoon (to Vietnam and Cambodia). Nothing earth-shattering on the medical side has happened until now, so I have not updated everyone.

On Friday, I had an upper-body, high resolution CT scan. My doctor called me during brunch on Saturday and told me the radiologist’s report indicated no evidence of disease. I should explain that CT scans are administered by technicians who do not know how to read them, but do know how to administer the scan and make sure the images are usable. A doctor subsequently reads the scan and formulates a report. I used to receive these via e-mail, and they make for very unnerving reading even if there is no cancer in them - a person who reads your CT scan knows more about your body than you do, and describes it in excruciating detail. Some rely on these reports, but others go back over the images personally, and only pronounce a definitive result at that point. My oncologist here is of the latter school, and he confirmed today that the scan itself is clear. 

I had another clear scan in May, so this means a year of living in remission. Most of my remissions have not lasted this long. Some have been just a few weeks, others as long as six months. Regardless, I am very glad to be able to attend my own wedding without the specter of ongoing cancer treatments in the immediate future. my future-wife and I will be able to enjoy our honeymoon with some confidence that it will not be our last trip together, and that is a weight lifted from our shoulders. 

For the next year or so, these scans will be the goalposts and mile-markers for me and my loved ones. Each one grants a 6 month period of freedom from aggressive cancer treatment. If I live cancer-free for 2 years or more, then the intervals will get farther apart, and the periods will get correspondingly longer. I revel in these periods of peace the way that anyone who has been confined, poisoned, cut up, electrocuted and irradiated would. It means I can get some breathing room - to accomplish some goals, gain some strength, spend time with my loved ones and in my home. 

On the negative side of the ledger, the scan revealed some ongoing inflammation in my lungs. To me and the folks who see me daily, this is no surprise. I have at least one prolonged coughing fit every day, sometimes many more. I use two inhaled steroids, and an oral one, and I still regularly gross myself and others out with ill-timed and/or ill-placed mucus production. It is not clear why this is a problem for me. Chronic lung issues are not uncommon in bone marrow transplant patients, but my particular symptoms don’t match up very well with typical post-transplant problems. I have yet to hear from my pulmonologist, but I think the inflammation was not visible on X-Ray or CT scan previously, and that it is now more detectable. 

Handling these issues isn’t simple, because the same steroids that keep me from suffering reduced lung function also make me more vulnerable to respiratory infections. Since my immune system is not as effective as a normal person’s in the first place, I am very prone to chest and head colds - I have had 2 that required rush antibiotics in the last 60 days. Furthermore, steroids, cold medicine and some of the other drugs I take are stimulants. You may recall that I had the better part of a lung removed in 2009, and that I have had heart surgery, and a number of treatments that damaged my heart and lungs. Stressing the pulmonary system with stimulants is a bad idea for someone in my state, so we have to be careful about the doses and interactions between these medicines. 

I am periodically frightened by these lung issues, because my survival now depends on whether my transplanted immune system kills off any occult (invisible) cancer. The disease has appeared in and around my lungs every time. Weakening the immune system there even as the inflammation continues, is risky, I think (given my limited understanding of how cancer works). Cancer cells can propagate and avoid the immune system by highjacking and feeding off of the inflammatory response. This was discovered when factory workers who had repetitive injuries - being rubbed raw by the same machine belt in the same place over and over again, for example - developed tumors near the points of injury. If you think of chronic lung irritation the same way, you will understand why the coughing can get unnerving for me. 

There are some other low-level problems. In the last few months, I have developed extremely painful cramps in my feet and legs. This is also apparently a well-known side effect of marrow transplants, though its causes are not very well understood (so far as I have been told, anyway). I have no idea why it has started happening now. My doctors tell me that they think chemotherapy and low-level graft vs host reactions damage nerve fibers in certain muscles. The nerves then fire inappropriately, and cause the muscles to cramp up. The attacks can last for a long time, and they are exceedingly painful - I have a relatively good tolerance for pain, and I am not prone to verbalizing my discomfort. Even so, I regularly wake my special lady friend with pain noises. Heating pads and big doses of magnesium and potassium can alleviate the cramping, but sometimes the spasms persist and there is nothing for it but swallowing painkillers and attempting to ignore or sleep through the episode. So far, I have not had one of these attacks during class, but I fear it is only a matter of time before they happen at some inconvenient time - when I am far from vitamins, or a place to lie down, or, even worse, driving. 

I am still physically weak - I need to make the time to do some exercise - for strength, and for disease prevention purposes - but somehow it always seems to slip away. But it’s not just about muscles - my chronic fatigue issues persist. 

Perhaps the most tiring health challenge at present are my allergies. I have allergies that are common among blood cancer patients - wheat/gluten, cow’s milk, sugar, tomatoes, and some others. It is rather hard to avoid these allergens, and as I have been more careful about my diet, my sensitivity has gotten worse. If I eat wheat products now, I experience severe pain. When I am less than careful about the other allergies, the symptoms are milder but still unpleasant. There are two principal solutions for allergies - antihistamines and shots that contain small amounts of the allergen, enabling the patient to build up a tolerance. But antihistamines aggravate fatigue issues, and my immune system and inflammatory reactions are troublesome enough without intentionally aggravating them. So, I am very careful about my diet. I avoid the allergens while trying to emphasizing foods with cancer-fighting and immunity-building properties. I have found that many gluten free products contain other ingredients that trigger my allergies, so I make much of the food that I eat from scratch. This, I am occasionally told, falls into the category of “doing what everyone should do anyway.” But if you don’t follow a diet like mine, or cook for yourself daily, there’s probably a reason. High on your list, I suspect, is “(in)convenience.” A “graduate student diet,” for example, generally includes candy, store-bought snacks, burgers, pizza and Chinese food. Eating any one of those items would cause me profound discomfort. 

More broadly, I am still adjusting to living a relatively normal life, where my schedule is not totally flexible and my day is not dominated by rest or medical care. It has been three years since I had to schedule myself around a larger group’s needs and agenda. I love graduate school, but I have, in some ways, become temperamentally ill-suited for it. A key graduate student skill, for example, is knowing when to emphasize investments in skill-building or knowledge accumulation that will pay off over the longer term (2-5 years), rather than trying to rush and publish something immediately. Everyone finds this challenging, but I think I am particularly troubled by it because I am not accustomed to planning more than 6 months into the future, or voluntarily delaying something safe and within my abilities for long.  Some of the mental discipline required for school is at odds with the ethos of self care and “carpe diem” comes with the standard coping skill package for cancer patients. 

Occasionally, I delude myself into thinking of myself as a normal, able man. People who love me do the same. But if I forget my limits, I push myself too hard. My body issues its subtle warnings - hot and cold flashes, respiratory symptoms, digestive issues, pain. I remember being healthy and able to  ignore some minor discomforts or signs of infection to go about my business. Ignoring my body now has immediate costs. If I don’t listen to it, it soon forces the issue, and I end up confined to my bed by pain or sickness. Even when I am not sick, I find that I need at least 2 days of rest after a single late-night work session. For those who live the day to day with me, these routine occurrences, and the rush for antibiotics, vitamins or disability/insurance documentation punctures the illusion of freedom from cancer and its consequences quite regularly. 

Upon learning about my health, a lot of people ask me how I am doing “really,” or “day to day,” or what my life is like.  I have experienced this more than usual lately, because I look healthy, and the new people I meet in school are surprised to learn that I recently had cancer. That’s a hard question to answer. I suspect most people would struggle to succinctly describe what their day to day life “is like.” I generally can only provide the obvious (and unhelpful) truth that life is better in remission than with cancer. I honestly think, that it is easier for healthy people to empathize with or understand sick cancer patients than healthy survivors. By adulthood, most of us have been very will at least once, and have experienced what we thought was severe pain. But if you have never had a chronic illness, or lived in a place where death or injury strike seemingly at random, it is hard to understand what it is like to be healthy but living under a Sword of Damocles that may - or may never - fall. And although every survivor has been wounded by the blade, we cannot know how badly it will maim, whether its next blow will be fatal, and if death will come swiftly or slowly if it strikes again. Cicero’s essays on virtuous rule mention the Damocles legend and say: “…there can be nothing happy for the person over whom some fear always looms[.]” This is a valid point, but also a typical Ciceronian overstatement - I spend every day with fear and uncertainty, but also with humans, animals, food, books and ideas that I love. 

There is always fear, but often there is also happiness. I am never free from the fear that the disease will return, and the time around scans is always punctuated with panic attacks and sleepless nights. It has been a long time since chemotherapy killed off my hair, but in the 6 weeks before a scan, I find loose strands in my hands every morning when I shower. Even in the pleasant aftermath of a clean scan, fear and risk management is built into the structure of my daily life - from the stack of pills in the morning, to the ritual of sanitizing hands and surfaces while avoiding sick people and the careful approach to food at every meal and snack. Each of these minuscule calculations reminds me that I live in the shadow of cancer and will probably never leave it. 

For now, I have 6 months to live a semi-normal life in the company of my lady, my cats, and my human family and friends -  and hope for many more similar months. I have found fulfilling and challenging work with pleasant colleagues in a great institution of learning. These things make me very happy. Once again, I want to thank everyone who has helped me - with gestures large and small since this phase of my life began. I am very lucky to have such a strong and widespread support system, and it helps keep me healthy and sane.