I always face Sundays with ambivalence.
It's a feeling I have had since childhood. It's part of my Catholic upbringing probably caused by the fact that I don't know exactly what offends God on the Sabbath.
I don't know the exact guidelines of what can and can not be done and what actions constitute a sin no this day. It's a very vague, gray area for me that's only gotten worse with my illness keeping me relatively reigned in.
I have reigned myself in these past couple days. I have designated myself to my house, enjoying my family.
It's not so much of an option, seeing as my cold has taken my breath away and Jon is still hobbling with a boot for his achilles.
We did venture out early yesterday (before the crowds) to Walmart which became an adventure in itself. X took charge throwing the heavy items into the cart and lugging them into the house. It's great to have an able bodied 6 year old around.
We are now prepared for the week. We even managed to get all the laundry done with the assistance of dear dad coming over to carry loads up and down stairs for us.
We've been really fortunate with all the help we receive to help us compensate for our disabilities.
Tomorrow I'm trekking down to Dana Farber to see my alpha transplant team, Dr. Alyea and Pr. Cochran.
I haven't seen this dynamic duo since Dec., and there is no guaranteeing I'll be seeing both of them tomorrow either.
I will be seeing Dr. Alyea and gaining some insight regarding how my graft vs. host disease can be treated as a whole.
My bronchiolitis obliterans is a side effect of my graft vs. host disease. My immune system does not recognize my lungs. It thinks they are foreign objects, like a bacteria or virus, and is trying to kill (obliterate) them. This manifests with wheezing, increased secretions, cough, shortness of breath, decreased oxygen saturation, and respiratory distress.
Respiratory failure or any significant lung problem has been my worst fear my entire life. I always blamed it on being intubated as a newborn. It's safe to say I'm living my worst fear. This disease is a nightmare nonpareil.
My cold has reminded me how fragile I am. These past two months have gone by so quickly. It's time to prepare for the possibility of treatments again or a severely altered lifestyle where my ability to breathe is always in question.
I want to deal with this as much as possible while I am healthy and able to make insightful decisions. I think it's important to evaluate what I will and will not tolerate as a quality of life and how I want to proceed.
The pulmonologist recommends photopharesis for my lungs alone. This is a 6 month procedure where my blood is taken out of me and run through a machine which manipulates my white blood cells and then replaces the blood.
Obviously, this is a dangerous, time consuming procedure that would be done in Boston.
It would also only treat my lungs.
My eyesight is deteriorating quickly alongside my lungs due to the GVHD. My eyes are the primary site of attack. I experience a "foreign object sensation" where I always feel like something is in my eye. They are gritty and painful to the point I can't even open them. My eyeballs slough white cells daily that appears like a junk in the corner of my eye. It doesn't hurt now with the steroids. I try to keep it in check with restasis, eye drops, and hot packs. Flax seed supplementation has done nothing to help, even after a year of taking it. Before the BO and steroids, I was set to start a trial for my eyes.
There are also mouth sores that alter my ability to eat and a nasty stabbing sensation from my salivary glands. There are also the skin changes, which I don't mind as long as they are cosmetic, but those also have the potential to turn into ulcers.
Dr. Alyea will hopefully offer up some options on how to control my GVHD as a whole. I'll then take the information and think, think, think about where we'd like to go from here.
Both my mother and Jon are going with me tomorrow, so hopefully we're having the conversation I hope we're having.
It's one of those talks that will hopefully help determine the course of our lives. I tend to have a lot of those with doctors.Cross your fingers. Say some prayers. Wish me luck.