Day 100 is here – how fast time goes by. One hundred days since the transplant, 100 days of waiting to see if it worked, 100 days of uncertainty and angst. So now what? What comes next? More waiting.
What is the meaning of Day 100? It’s a milestone, a major milestone. It is by no means the end of the stressful waiting period, nor does it signify that all is well and dandy and that I am out of the woods. It is simply a marker. Any Graft-versus-host-disease which happens within the 100 days post-transplant is considered acute, and whatever happens post-100-day mark is considered chronic. Be it acute or chronic, it’s all the same GVHD. Things can still happen, develop, spring up in the next upcoming months. Life is not suddenly ‘back to normal’ because I’ve made it to Day 100 – there is still work to do. Really, the first year is all fairly stressful.
What happens now, other than waiting? Well, this week is a full week of testing – every day filled with tests (bone marrow biopsy, pulmonary function test, salivary gland exam, Schirmer’s eye test, endocrine evaluation, CT Scan…etc.) They are looking to see if there might be damage caused by the high-dose chemo and meds, looking to see if there is still leukemia in my bone marrow and lymphatic system.
How do I feel? I feel fine. I’m dealing considerably well with a few side-effects (painful hands & feet; nausea & heartburn; fatigue; weight-gain). My energy and stamina is exponentially increasing on a weekly basis. As I have shared in previous posts, the emotional and psychological aspects of this journey are my biggest challenge right now but I am learning to deal with those as well.
What’s to come? As I said before, more waiting. Although my blood counts are relatively normal, my bone marrow is strong and working, my new immune-system is building itself, my hair is growing back there’s still some work to do. I need to patiently keep increasing my energy, stay out of trouble, and avoid infections. At any time things can take a turn for the worse and change drastically (I don’t think it’ll happen but it’s a possibility).
The other concern is whether my genes remain happy with the status quo. We know the transplant is working but there is no way to know for how long. The TP53 with 17p deletion chromosome complication is a genetic problem and we don’t know if/when that will rear its ugly head again. The transplant most probably took care of removing the life threatening Richter’s Syndrome (which is fantastic – the results of the bone marrow biopsy will let us know) but we don’t know if the CLL at the base of it all was or even can be eradicated. CLL is considered an incurable disease. Remission is possible, and sometimes for years (hopefully – that would be nice) but a cure is a tall order.
I have come to terms with having to deal with whatever comes my way and in fact, I should remember that things can change without warning and I should learn to appreciate the good times right now, as they are, for what they are. (The Canucks might win the Stanley Cup – that’s something to enjoy and celebrate, isn’t it?) I need to appreciate the life I have now, limitations and all. Why do I keep hoping that life will be better, more exciting, once I can resume a ‘normal’ life? How does one qualify ‘normal’ anyways? Perhaps this is my new normal and shouldn’t I learn to enjoy it right now rather than wait for something that might or might not happen? I think perhaps deep down I feel that life will be normal when I return to work (who know when that will be – 3 months, 6 months, a year?) So what, in the meantime I hold my breath until then? What if I am faced with a huge health hurdle again in a few months or a year, will I have wasted this time waiting for everything to be perfect? That’s a massive waste of time. Perhaps this is the lesson to be learnt – be happy now with what you have and stop dreaming of happier times if, when, with or without (fill in the blank). Shouldn’t it be the point of this exercise? Enjoy the now, the present, the current and don’t worry about what might or might not happen down the line (good or bad)?
We are all going to die at some point and since we don’t know when that will be, should we not make the best of our life now? My expiration date might be sooner than some which means I shouldn’t waste time feeling sorry and disappointed for everything I can’t do right now. Why can’t I be as happy now as I will/can be once I am able to bike for longer periods of time, when I’ll be able to go hiking and camping again, and when I’ll be able to travel. Yes life is definitely challenging right now and I am scared but it doesn’t have to be 24/7. In the meantime, I enjoy hanging out with my friends, I enjoy watching movies, reading and walking on the seawall (sounds like a bad dating profile – LOL).
Yes I miss Montreal and my friends and family in Quebec and it sucks that I can’t travel just yet, but the day will come, hopefully a few months from now, where I will be given the green light to travel again and I will be able to go for a visit. In the meantime, I love Vancouver and should keep on enjoying what it has to offer and remember why I chose to live here. Perhaps that advent of nicer weather will help dissipate the blues and enable me to go outside to enjoy relaxing on the beach and walking through the phenomenal forest paths. We always complain we never have enough time when we work to enjoy these relaxing activities. Well, this is my job now, relaxing everyday and getting better and stronger.
I can still learn to live in the now (enjoy the quiet times) and keep on dreaming of going places (Europe) and doing new things in the future (sky diving, deep-sea diving) and one day, perhaps soon, to be able to resume what I love (camping, hiking, mountain biking…etc.) It’s all a matter of perspective. Might as well enjoy the things I can do now.