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 1^st 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!

Nine Month Update

Gosh, it just doesn't seem possible that nine months have already passed since Ray's transplant. Where does the time go? Makes me think of the song "Time Marches On"  Click here for link to hear the song  "It’s being here now that’s important. There’s no past and there’s no future. Time is a very misleading thing. All there is ever, is the now. We can gain experience from the past, but we can’t relive it; and we can hope for the future, but we don’t know if there is one." ~George Harrison~ 

In many ways it seems unreal all that Ray & I too have gone through in the past year. I ponder on what the future will hold for us but that seems senseless because there really is no way for any of us to know. The best we can do is live for today & take each day as it comes.

Right now we hope to make it back home to Indiana by mid April but at this point we can't even plan for that because Ray may need to remain here to get another bone marrow biopsy & more baby vaccinations on his one year anniversary because he is part of a clinical trial. Yes, he could possibly have it done back north but we both feel strongly that it be done here where he is most comfortable with the hospital & doctors. They are in the process of checking to see if it's allowable to move the procedures up a couple of weeks.

Ray continues to have issues with his dry mouth which greatly affects his appetite. So many things don't taste good to him now; things that he used to love. They've prescribed several different meds & rinses but nothing is helping so far. The swelling in his legs continues to plague him too & various attempts with meds have not yet resolved that problem either. Occasionally in the evenings his temperature goes up & he feel puny but usually he feels better by morning.

This morning Ray had an appointment at the hospital to check on his hemoglobin level because it was slowly dropping again. Lo & behold it had dropped even more & therefore it turned into another day of what should have only been an hour long lab appointment, into an eight hour visit as they gave him another blood transfusion to boost him back up.

I must admit that the past week has been somewhat stressful & frustrating to me as I am trying to deal with insurance coverage. Because of the exorbitant  monthly cost of his prescriptions (over $5,000) all indications told me that it might be beneficial for him to sign up for the Medicare Part D plan & let our other insurance become the secondary payer, thus saving any co-pays we normally would have. He would only pay $28 per month for the Part D plan & with the secondary picking up the co-pay, he would save $200 monthly out of pocket. So far I've spent over six hours on the phone this week hashing it out with the two insurance companies attempting to get their coordination of benefit process to work as it should. Imagine my shock when the pharmacy phoned me to say that Ray's prescriptions were ready & the balance due is $1,500. Well after several phone calls, I got that balance down to $160 but it's gonna be down to zero by the time I'm done. I WILL prevail! I had one customer service rep tell me that the primary coverage would kick in after my "retirement status ceases". Really!? When that happens, I'll be dead won't I?

But the good news is that Ray is able to get out & do things within reason. Unfortunately he's not quite able to do as much as he had hoped. He attempted to play tennis & within 2 minutes of stepping onto the court, he took a really bad tumble & skinned himself up. Fortunately the wounds healed up okay without any problems but no more tennis for him for awhile yet. He can play shuffleboard just fine & is enjoying that very much. And we've been playing a lot of cards with several friends. Of course there is also the weekly Karaoke Night in our park & various other things that we do that fill the days.

And so it goes...