Thursday, April 17, 2014

Pandora's Box

"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.

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Wednesday, April 2, 2014

Out Sick Again

It has been awhile since my last blog. I haven't had the energy or even the thoughts to put into the blog. I have been battling with congestion and a persistent cough for a little over a month. The congestion is so bad that I have no sense of taste and no sense of smell which has interfered with my appetite. My cough becomes so persistent that at times I lose my breath and become lightheaded, with many bouts of vertigo.  Sometimes I'm coughing so hard my eyes water and my ribs ache.  And most recently,to add on top of all this, I'm 100% pure exhausted. I become so tired I have a hard time keeping my eyes open and many times I'm out of breath.  I can't even climb the stairs without trying to catch my breath.

I'm on my second round of antibiotics. This round of antibiotics is completely different from the dosage I had a couple of weeks ago. I'm ready for warmer weather with the hopes of less sickness.  So far, 2014 has been a difficult year on my health.  I'm becoming very down and very frustrated.  And I'm just sick of being 'sick'.

Is this going to be my 'new normal'? Since my stem-cell transplant, my winters have been full of cold and flu. However, this year seems to have hit the hardest. I don't remember being this sick all of the time. I'm truly hoping and praying this is the worst of it and better are days ahead.

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