Did You Hear I Had Cancer?March 1st, 2013
I’ve never been much of a hockey fan, but I know some of you are, so I’m sure you’ll appreciate that I have NHL (Non-Hodgkin Lymphoma).
I’ve always wanted an FL, particularly one between 1960 and 1964. In 1960, Harley-Davidson improved the look of the Duo-Glide with a two-piece stamped aluminium fork nacelle that shrouded the headlight. Of course, in 1965 the Duo-Glide became the Electra-Glide, which meant that an ugly box to hold the battery took the place of the beautiful oil tank. Unfortunately for me and my family, the letters “FL” have more meaning than Harley-Davidson’s complicated, and sometimes meaningless, model nomenclature. For us it means: Follicular Lymphoma.
My prognosis is not as good as when I assumed I had Hodgkin lymphoma, but it could be worse. Follicular lymphoma is not considered to be curable, which means for the rest of my life I will be going from an indeterminate number of years of remission, hopefully more than ten, to a phase of relapse and treatment, back to remission for an indeterminate number of years until the next relapse. There are a few possible complications along the way, such as the cancer traveling to different parts of the body (bone, spleen, other organs) and transitional lymphoma, but it’s all pretty much treatable. I was looking forward to being a centenarian or close to it, but it’s unlikely I’ll get to enjoy watching the Internet crash on January 19, 2038 (this is an actual problem that must be fixed, unlike the Y2K hype).
Of course, I could ignore the average life span of someone with Follicular lymphoma and just focus on the average 5 year survival rate which is 70%. (If you worry a lot, don’t subtract 70 from 100.) This means that every time I have a relapse, I’ll have a 70% chance of living another 5 year, and since treatment is always improving, this 70% will increase with every relapse. 70% is really good odds, especially if you compare it to the various lotteries and how much money people put into them, so if we just focus on this survival rate, I’ll live forever. Well, at least until the second coming of Christ, after which we’ll all live forever; however, there is the question of accommodations.
(Here’s an example if you don’t understand the “I’ll live forever” thing. Lets say that I’m 156 years old when I have another relapse. With treatment, which is always improving, I’ll have at least a 70% chance of living to the age of 161. Math can be a lot of fun when you don’t factor in all of reality.)
I know from the CAT scan that I’m in stage III: aside from the large lump on the left side of my neck, there’s seems to be several more enlarged lymph nodes within my neck, one in my right armpit, multiple in my chest, and extensive in my abdomen. I had a PET scan on Wednesday of last week (the cat I got the week before was nice, but since I got to choose a pet this time, I went with a mongoose), which made all the enlarged lymph nodes glow. I had a bone biopsy on Wednesday as it’s quite common for Follicular lymphoma to progress into the bone marrow. If so, I’ll be in stage IV (still highly treatable, but bone marrow transplants are not much fun). My first chemo treatment was yesterday, February 28th.
The treatment they’re going to use on me is bendamustine in combination with GA101, which should be as good, if not better than rituximab. Bendamustine is a type of chemo that does not cause hair loss, or very rarely at least. This may disappoint some of you as you really wanted to see what I’d look like without any hair. I’m a little disappointed myself as I was really psyched up to loss my hair and even my eyebrows. I was even planning on getting it cut so I could donate it.
I actually started growing my hair long again because my ex-wife/fiancée told me I wasn’t allowed to shave it (I’m a computer programmer, I think binary). However, a strange thing started to happen around six years ago: my hair started to shrink. Everyone more or less ignored my complaining about this, but it seems that in rare cases of lymphoma, the growth of hair slows down. (This is actually much more common in dogs than in humans. If you wish, you may laugh now.) Hence, every time I had a hair cut, my hair didn’t grow fast enough to make up for what had been cut before I had it cut again. Thus: shrinking hair. Right now, the lenght of my hair is much thiner than it was four or five years ago, and there are quite a number of hairs that are too short to reach the ponytail elastic. Therefore, I was kind of hoping to lose my hair with chemotherapy so I could start all over again.
It’s chemo this time, but there are all sorts of different treatments, which are usually used in combination. The coolest sounding one is radioimmunotherapy, which involves giving me an antibody made in a lab that has a radioactive molecule attached to it. (Is this what turned Dr. Robert Bruce Banner into the Incredible Hulk? If so and they use it on my in the future, I’ll really look forward the first powerlifting competition during that remission.)
Of course, lymphoma is not all fun and games. To be honest, ever since the evening of November 10th, when I realized the lump on my neck was not just more muscle development (you can stop laughing now, I’m trying to be serious), I have become more and more joyful and appreciative of everything. It was only after Christmas, when I actually started to read about lymphoma, that I realized that I’m not terminal, at least for now (we’re all terminal). Even though at first I was certain I was going to die (soon), which was quite beneficial for my spiritual growth, I soon felt quite confident that everything was going to be just fine in the end (though I also felt fine with the prospects of death).
I’m learning a lot. Such as, what it’s like to have people do everyday things for me that I can’t do right now. I used to do things for people all the time. I enjoyed it. I felt privileged and honoured to do it, and never understood why they couldn’t seem to control their gratitude. Now I understand. Thanks everyone. I feel like giving you a great big kiss.
Feeling weak and fragile is great. It makes me realize that I’m weak and fragile. Regardless of how healthy I could be, without God’s constant care, I wouldn’t exist. Nothing would. Everything I seem to have, my worldly possessions, my family, my body, my soul, it’s not mine. It all belongs to God. The only thing God has completely given me as mine is my free will, which I have joyfully given back to Him.
I’m also realizing how vain I really am. Losing muscle mass is a great lesson against vanity. I have to lose some vanity to have the confidence to go back to the gym when the cancer’s in remission and use the dumbbells. I haven’t used dumbbells in a long time because the ones at my gym only go up to 100 lb. (only shrugs & rows), which is not very much. Many people thought I was going to have a problem if I lost my hair, but as I said, that really did’t bother me at all. I was more worried about the possibility of loosing the hair that no one else would ever see (I don’t think this is actually all that common), which is a rather illogical form of vanity. But then, there’s not much logic to vanity or any other vice. I really didn’t think God was going to miss the opportunity to teach me a lesson with that one, but I guess God decided that it was enough that I just thinking about it good and hard.
The biggest lesson is realizing how incredibly fortunate I am. My life is wonderful, and has never been boring. Boring would have been a lot easier, but I’ve learned so much from all the stuff I’ve been through. I am at a complete loss for words when I think about all the graces that has been given to me, knowing how completely unworthy I am of any of them. Why did I receive all these graces? Why not him? Or her? But who am I to judge, maybe they have. I am so overwhelmed by the mystery of it all that I am sometimes reduced to tears.
The only thing that really concerns me is my ex-wife/fiancée. Of course, I’m concerned about our daughters, not to mention the rest of my family, but my ex-wife/fiancée depends on me a great deal on many levels. Time apart from one another is very painful, and knowing that she’s lying in bed alone at night worrying about me and crying troubles me a great deal. I’m not sure how this new illness of mine will affect her recovery from Post-Traumatic Stress Disorder, which was triggered by the discovery of my mental illness over 14 years ago (some people are using the word “cured” for my present mental health, but I’m going to wait for a few more symptom free years before I start using that word myself). Please pray for us.
A few weeks ago, my ex-wife/fiancée told me how important it is that I stay positive. I told her that I’m the most positive person in the world. She agreed and this made her feel better. It’s very important that she remains positive. What I didn’t tell her is that I’d be just as positive if I knew I was going to die in less than a week. I’d rather she not know this, so don’t tell her. I sometimes read her stuff that I’ve written, but she never goes online to read my stuff, so don’t worry her finding this and reading it.
Since I made the news of my cancer public, many have told me how important it is to offer up my suffering for a particular intention. Don’t worry, God gave me one. Actually, He tricked me into one. On December 18th I came down with the flu. There was a particular issue that was on my mind, so I decided to offer up the suffering from my flu for the intention of resolving this issue. The symptoms of this flu were rather strange: weakness, fatigue, chills (some nights, I feel like my lungs and stomach are frozen), night sweats. As time when on, a bit of nausea was added along with a cough. Well, I still have this flu, and I’m looking forward to starting chemotherapy so it will go away. However, the intention I was offering up the sufferings of these symptoms must be rather important as it doesn’t look like they’re going away anytime soon and may get worse. As well, when I have a relapse, I guess I have to keep this same intention.
I have already accepted what intention I should offer up the suffering from chemotherapy for. I believe that this intention is so important that, although I hate to use the word hope in this context, I hope I become very sick on chemo. However, I have heard that chemo sickness is not as bad as it used to be. I’ll probably regret I just said that, at least for a time. God often takes me at my word, and when He does, I wish I hadn’t said anything, but when it’s over, I’m glad I said it.
The prayer that I’m encouraging everyone to pray is the Prayer for the Canonization of Blessed John Duns Scotus. Some of the reasons why I’ve chosen this prayer are explained on my prayer intention page. There are many other reasons that have led me to believe that it’s very important that I promote this prayer, particularly for this intention of mine. I’m also going to have people pray a novena to him from March 11t to March 19th.
“Fiat mihi secundum verbum tuum.”