The Inevitable

At this point in the peace-making process with CML, my main concern is that I will one day become resistant to my medication. Sometimes it hits me that I will die from this. It might not be next year or the next five years, but barring some random accident, I will die of CML. And when I think of that, I wonder what that will be like. I know, that sounds really morbid. But I don’t think it can be helped. I think maybe its my brain’s way of preparing itself for my possible future.

I see myself becoming resistant to my medications, then moving on to trying different kinds and new mixtures .. pills, pills, more pills. Side Effects. Good days. Bad days. Maybe a few years of relative comfort and then ultimately I’ll  run out of medication choices. At that point the only option would be chemotherapy and a bone marrow transplant. With that comes a long list of delightful prospects. Nausea. Lethargy. Pain. Hair Loss. Weight Loss. Depression. Anger.  And ultimately either I will be cured or dead. And for those over 29, like me, living through the process is far from guaranteed.

Ugh. See why I can’t go there very often? I start to read news with the hopes of being pleasantly  surprised by new advances and then my mind and emotions just run away with me and suddenly I’m paralyzed by fear. And one thing I know already is that if you have a chronic illness, you can’t afford to be paralyzed for any reason. So you do what you can. Live in denial. Work to get your priorities straight. Make lots of plans.  Travel. Make a list of goals and do your best to achieve them. Find a job that doesn’t eat your soul. Make an effort with your family. See your friends. Love your lover. Hug your pets even when they eat the strap on your new purse. Surround yourself with supportive, empathetic, positive people. And just cross your fingers that by this point in your life you already have a relatively strong list of those types of people.

Well, really I wanted to talk about this stupid article… which isn’t really stupid at all. It’s actually pretty incredible. Scientist have bred a mouse with CML which will allow them to understand and target the leukemia-initiating cells that are able to slip by meds undetected. Poor little mice. They totally get the shaft in this whole thing. But I assure you Mr. Mouse, I appreciate you. Knowing you’re out there “working” with scientist to help me avoid the grim future that my scared little mind imagines, provides me a lot of comfort. If I had your address, I’d send you a top hat and a hunk of cheddar.

Cheer

This week has been good. I feel happier and more hopeful than I’ve felt in months. It almost feels like I’m waking up… like I’m opening my eyes and looking at the world the way that I used to. I feel so relieved. There have been some days so dark in the past few months that I thought I might never come out of it. But being sad is so damn exhausting! It’s not like I’ve had some sort of enlightenment. I’m still pissed off and feeling sorry for myself to some extent. But at some point you just have to put those feelings in a box and close the lid. I’m finally starting to feel like I can do that… like I can have some control over how I feel and when I allow myself to feel it.

I even feel like being social! Which I haven’t felt in months. I’m so lucky to have friends who wouldn’t let me sit in my apartment and sulk the way that I wanted to at times. My friends are kinda the best. Kinda = Completely.

Not being able to drink has been another major reason I haven’t been wanting to socialize. It’s been much harder for me than I thought it would be. I knew that I would miss it, but I didn’t realize how much I used it as a social crutch. I guess because I drank so moderately, I didn’t think I depended on it that much. But really it only takes a glass or two to make a difference. When I go to parties now, I’m entertained for about 2 hours. Then about the time that everyone else is lit, I’m burned out. And of course it’s harder to be silly.. for me anyways. So I guess that’s something that I’m going to have to work on and hopefully one day master, because silly is my favorite state.

My friend Robert has vowed to not drink for 2 months, to show his support. He even sealed it with a pinky swear, which I take very seriously. It means a lot to me, especially considering that I know how much the boy likes to drink. So if you see this man with a drink in his hand, please tell him to be a better person.

I’m sure there will be times when I won’t be able to keep the lid on my box (I think that came out wrong). But with practice I hope to be able to live in blissful blissful denial as much as possible.

Descendents – Cheer

Learning from My Father

The last week has been super hard for me. I don’t know exactly why. It’s not like anything new has happened. Friday night and Saturday I just couldn’t stop the tears. I keep wondering when it will get easier. So far its only gotten harder. I feel frantic to accomplish all of the things that I want to accomplish. But instead, I feel so stunned and depressed most of the time that I have a hard time socializing and living my life the way I used to. I feel like a deer in headlights. If I’d just move, I might be able to save myself from some pain. But I’m stuck in the road and have no idea which way to go.

I’ve been thinking about my dad a lot lately. He was in his early forties when he died. He had type 1 diabetes (which consequently took his eyesight in his early twenties). He was an incredibly adaptable and positive person. I’m understanding that more than ever now.

He used to always say “Life is good!”. This was his mantra, all the while knowing that his body was deteriorating and that he probably wouldn’t live long enough to see his youngest graduate high school. He rarely complained about his physical condition, the diabetes or the blindness. He got around like a seeing person and it was easy to forget that he took daily injections, because it wasn’t something he brought up. Everyone that knew my dad commented on what an incredibly fun, wonderful and light person he was.

I always miss him and I always wish he were here. But lately I feel like I’ve needed him more than ever. Not just because I could use his support as a father, but I just wish he were here to show me how to do this. To teach me how to do this without self-pity. How to navigate my new existence with hope and happiness. To teach me how to get beyond the fear and start living again. Instead, I just try to remember how he lived his life and know that it is possible to dig my way out of this burden.. his was bigger than mine and he did it.

To end on a lighter note, here’s a pic of my bunny, Radar, taking a piece of lettuce from me. She’s a lettuce junkie. I really should capitalize on that and teach her to jump through burning hoops. Also, I wonder if this is going to become a trend… slapping a pic of a rabbit on the end of any post that makes me feel exposed.

Variables

One of the hardest things I’ve had to deal with since being diagnosed with CML is making peace with the unknown. I think my struggle is illustrated fairly well by the fact that I’ve felt suicidal a few times since July. The idea never lasted long and I was always able to push it away quickly upon realizing the irony of the sistuation: I’m afraid of dying, so I’m going to kill myself. How absurd. I know that plenty of people with chronic ailments “off” themselves, but usually it’s because they are in physical pain. I’m not in physical pain, so what is this all about? I’m guessing it’s about control. It’s about knowing (or falsely believing that you know) your future. The following are a few of the major question marks bouncing around in my skull.

#1 – How will I live my life

This one is the easiest because it is the only one in which I feel I have any control. However, I’ve been surprised at just how hard it has been to decide what I value most. I mean, don’t we think about this on a daily basis? Aren’t we constantly searching to understand what will make us happy? Yes, I think we are. But sitting down and saying, “If I have 2 years left, what do I want? If I have 5 years left, what do I want? If I have 10 years left, what do I want?” is much more difficult. Yet it has been the only way, I’ve found, to really prioritize. And still, I struggle daily to determine what I value and to what degree.

#2 – Will the rest of my life be painless

This is one of the things that disturbed me most about Dawn’s blog (as mentioned in my first post). She had become resistant to leukemia meds and had to receive a bone marrow transplant. She died soon after that. Bone marrow transplants are always dangerous to survival and only become more dangerous as you get older. The age of 32 is considered old by transplant standards. The pictures in Dawn’s blog show  a happy lively girl transform into an unrecognizable version of herself, sick and zombie-like. It seems ridiculous to me now, but I never actually considered that this could happen to me.

#3 – How long will I live

The medications that are currently used for CML are being touted as huge medical “miracles”. Gleevec is only about 6 years old and my med, Tasigna, is about 1 year old. Before these meds were on the market, a CML patient could expect to live roughly 5 years. With these medications a CML patient can expect to live…. nobody knows. This, of course, is the one question that I badgered my oncologist about most. Her answers were always vague, “we hope that you will live a long life” or “you will probably live much longer than you would have  before these medications were invented”. At first, this vagueness allowed me to believe that I would live to be an old eccentric woman with a house full of rabbits. When I happened upon Dawn’s blog, I realized that this is probably not the case. And that “much longer” is still undefined. For now, I am a guinea pig. I take some comfort in knowing that my experience will help future patients have some closure on this issue.

#4 – What is waiting for me on the other side

I’m not going to talk much about this one, for two reasons. One, I think this is a question that people deal with their whole lives, sick or healthy. Two, I’d like to go into more detail about my thoughts on this issue in a future post. I will say that having a chronic illness has given my brain permission to visit this question quite a bit more than I ever have before. I suppose there are the religious types who believe that they know, without a doubt what is on the other side and that it is a wonderful, utopian place. Unfortunately (and fortunately), I am not one of those people.