"We open this huge Pandora's box (of late effects of transplant)...."the leukemia may be gone, the patient has survived, but how do we get them back to normalcy? That is the challenge."
- Madan Jagasia, director of Outpatient Transplant Program and chief for Hematology and Stem Berm Transplant at Vanderbilt Ingram
"Opening Pandora's Box"
After a rough start to the new year (2014) I have noticed an increase in complications with my health. I'm trying to learn and understand are these just normal occurrences, are they related to cancer, the chemotherapy treatments and stem-cell transplant or is it all a combination?
This article speaks to many truths post transplant. I referenced the above quote from the article because it really gets to the heart of the matter. But there is one thing about that quote that I begin to question - "how do we get them back to normalcy"?
I'm not sure anything can get us back to normalcy. The transplant community uses the term your 'new normal' for life after transplant. Dry eyes, blurred/double vision, lung issues, GI tract issues, tingling sensations in limbs, dry skin, mouth and nose, lack of energy and possible neurological damage to list a few is to be my 'new normal'? And I'm just going to have to accept this? I wish it were that easy.
It's all a complete mind f#ck. Each experience is personal to the person that has fought this battle. No two experiences are alike. Sure, we may have similar experiences and share common side effects but over all you still feel so alone in a community with a shared experience.
Where do we go from here? How can we learn to accept these complications whether they occur daily, or frequently or just occasionally?
It feels as though it has been one health issue after another. Feeling misunderstood, that I need to be thankful that my cancer is gone and look forward to the positive light. I really wish it were that easy, especially when everyday there is something that makes you feel like shit, or you can't catch a breath or even be able visually focus on something.
I know this is sounding like a 'poor me' thing but so what if it is. Why can't I say or think it? Is it really that wrong to say or think? Maybe if I allow myself that 'poor me' thinking, I can allow myself to recognize my weaknesses and begin to feed and build them into strengths.
I'm hoping for more answers next week. And I'm just trying to find my way with this 'new normal'. It isn't easy but I know, at some point, I will get there. Because if anything I have learned about myself, I don't give up and it will be a fight to the end.
Image source: http://i.livescience.com/images/i/000/049/809/original/pandoras-box.jpg