Sunday, September 7, 2014

16 Months Later but Who’s Counting?



Gosh, I remember when I use to update this blog on a regular basis but now I’ve pretty much let it fall by the wayside. In many ways that’s probably a good thing because it means that Ray is not experiencing near the complications he did during the 1st year following his transplant. We returned to our Indiana home in mid April & health wise Ray seemed to be progressing fairly well most of the summer. Until lately.

A few weeks ago his legs began swelling again. Mostly during the day & then at night they would go back down. Then they began hurting him during the day & swelling even worse to where he could hardly walk on them without a lot of discomfort. He began running a low grade fever, often just at night. I’d give him some Tylenol & the fever would subside. Was so strange. And then he developed a nagging dry cough that persisted. Ray’s appetite was not good either & he lost 10 pounds in two weeks time & he began experiencing more fatigue. Ok, time to seek some medical help.

For two solid weeks we were either at a doctor’s office or hospital every single day trying to figure out what was going on. Visits to the oncologist, vascular surgeon, cardiac doctor, pulmonary doctor, as well as the hospitals for vascular leg scans, echo-cardiograms, pulmonary testing, lung endoscopy, cat scans, labs, etc. Next week he goes to see the gastroenterologist & have some more procedures done, all in an attempt to rule out various causes. 

In the meantime the compression stockings he was fitted with seem to be helping immensely with the leg swelling. The echocardiogram of his heart revealed fluid around his heart & so far the doctor says that he doesn’t want to drain it unless it gets worse. Sometimes that can be the cause of leg swelling but the doctor didn’t think in his case it is. The vascular scan of his legs did not reveal any clots thankfully. The CT-scan reveled inflammation in several areas of his stomach. That may be the ‘Graft vs Host Disease’ showing its ugly face which is common after bone marrow transplants. The lung endoscopy did not find anything conclusive, yet the dry cough continues.

As I read back over the journal I kept from last summer immediately after his transplant, I realized he had gone through many of the same symptoms then. Eventually they cleared up & he began feeling better. We are sure hoping that he will get through this episode as well. Something tells us that this may be how it’s going to go from here on out with these episodes coming & going? He’s not letting it slow him down too much currently, but for a couple of weeks it sure did.

Ray joined the local fitness center when we returned to Indiana to help gain back some of his muscle & lost strength. He tries to work out at least every other day there & is now able to do so much more than he did when he first joined, gradually increasing the weights & exercises he does. He also has been doing more around our house than when we first got home. His hair has never grown back but that’s ok. What’s there is very sparse & hardly visible but we’re used to it now.

We’ll be heading back to our Florida home for at least the month of October & plan to return to Ray’s doctor at the Moffitt Cancer Center for further evaluation. I imagine he’ll have lots of appointments there to check things out. During that month we will also be going on a week long Caribbean cruise to see our son get married on one of the islands! There are over 50 family & friends who will be part of that cruise & wedding festivities. So you see, we just have to get Ray better by then!

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