Wednesday, September 18, 2013

Mile Marker One

I had my first N.E.D. follow-up appointment yesterday. There was blood work, a visit with my doctor, and a port flush. Everything looked good. My white blood cell counts are a little low right now, but everything else was in normal ranges. The number I was most concerned with was my CEA. Short for carcinoembryonic antigen, this is a tumor marker in the blood that helps predict outlook in patients with colorectal cancer. Lower is better, and anything under 3 is considered good. My CEA is 0.5. This is a bloody brilliant number. I was only mildly anxious before the appointment. And that continued until I received the CEA number this morning. But I have to admit that it feels really good to receive this first clean continued bill of health.

Of course you can only tell so much from a physical exam and blood work. I feel like the first "real" test of my continued NED-ness will be with my first follow-up PET scan at the end of November. It will be six months out from treatment at that point. And I'm pretty certain that I will be distressingly anxious about that one. But... I will take these rare moments of anxiety over treatment and daily considerations of mortality. Only four and three-quarter years to go before I can "officially" be on the other side of this mess.

In the meanwhile I've been reading quite a bit. Just finished a new book called "The Cancer Chronicles" which was released last month. It takes a fascinating look at cancer through history (even dinosaurs had it!) and to the latest research and medical work that is happening. Most of my experience in reading it was relatively depressing. I find myself in an odd quandary when it comes to reading about and researching cancer. I absolutely feel that forewarned is forearmed. But it is difficult to keep my thoughts from wandering and from often seeing the darkest side of every conclusion. To some extent, this book reinforced my idea that cancer treatment is a "throw it at the wall and see what sticks" type of situation. Doctors, biologists, physicists, geneticists (etc.) are daily discovering more about cell mutation, metastatic development, genetic markers, and hundreds of other cancer-related studies. Turning those discoveries into treatment options is tremendously slow and sometimes moot. And you again come to the problem that not every person responds the same. We are each complex systems dealing with a particular complex system of cancer, and what works in one system does not necessarily translate to another. It can make this kind of reading maddening.

Another book I just finished, and would recommend to all, is "The Meaning of Life" by Terry Eagleton. This short (under 150 pages) book is a dense little philosophical tome examining the phrase 'the meaning of life.' It starts with an examination of the word meaning before moving on to the larger phrase. Not light reading, but most assuredly enlightening. At one point in a discussion about modernist philosophers he uses the following phrase: "the fatiguing, unglamorous business of staying biologically afloat." I was immediately struck by this line, and took a few minutes away from the book to consider how extraordinarily well that can describe cancer treatment. The book as a whole had me thinking for several days about my standing in regards to life.

I often struggle when writing here. Trying to balance honesty and the state of my being (physical, mental and emotional) with hopefulness and a particular zest for living. But every day is not sunshine. Some of you have had those longer conversations with me where you can see the balancing act I sometimes play between fear of life and death. I expect that other cancer survivors understand this without explanation. How there is this crazy, ineffable mental track between pure despondency and true hope. One train of thought leads you toward the incurable certainty of death. Followed immediately by the powerful instinct to live, and do so without reserve. I have expressed concern regarding your reaction to the "low" moments. But I wholly believe that one cannot fully recognize the heights of happiness without perceiving it from the angles of both top and bottom. Life holds more meaning when held up against the spectrous shadow of Death.

And we cannot disavow the uncomfortable truth that cancer, and living itself, occasionally sucks. We can choose, however, which side of the track that we want to mentally house ourselves. The large majority of the time, I find myself on the side of hope and positivity. If I can somehow encourage the same in others, then I have made my significant mark on the world.

Thursday, September 12, 2013

A Peek in the Closet

Long awaited greetings friends. I have clearly been keeping busy and not getting around to checking in here lately. Also been having some issues accessing the blog for the last couple of days. Finally found a go-around, and am hoping that the issue is fixed on the server side of things soon.

Spent three solid days cooking last week. I've started to restock the freezer with the bounty of summer produce from the local farmer's market. It's about half full now and I have the makings for another two batches of vegetable stock, which will finish filling one of the shelves. Also spent a day and a half of that time making meals for a friend who just had hip surgery this week. She will be off her feet for a little while, so I got together with one of my best girlfriends and we made a week's worth of meals for her and her family. And I realized in the process that this may be a reason why I've been so inordinately lucky with my friends and support over the last year and a half. This is not the first time I've helped out a friend in need, and will certainly not be the last. I try to be there for those I care about, and in return they have been there for me. You get what you give.

My sister, brother-in-law and nephew came down for a day visit last week as well. We went to the Air Zoo and had a really good time seeing everything and riding the rides. It was, surprisingly, my first time there even though I've been here in Kalamazoo for thirteen years. We had some good visiting, went to the best pizza place in town, and generally enjoyed one another. My nephew just keeps growing and getting stronger. I suspect he will be walking sometime in the next month or so. Not talking yet, but I am looking forward to that development.

Many of you who follow this blog likely know that part of the initial surgery to remove my rectal tumor left me with a permanent colostomy. I've been relatively open about this fact in face-to-face conversations, but have hesitated to talk about it in this space. In the last few months I've gotten even more comfortable revealing this fact and decided that it was time to just "come out" completely. This has been a very large change in my day to day life, and a major change to my body and my body image. The surgery was in May of last year, and it took me several months to acclimate to this new normal. It's been over a year now and I figure that it was time to finally just let go. As with any major physical change there have been ups and downs and a variety of frustrations. I won't go into any of the stinky details, but needless to say, I've had to deal with many challenges in becoming an ostomate. However, it is partly because of this change that I am still here and in good health. If you didn't know about this already, or are interested in knowing more, please feel free to contact me or find me face-to-face and I'll be happy to chat about it and answer any questions.

I'll leave you all with that big reveal. I've got quite a bit on my mind lately and will likely post again in the next couple of days.