It's been great having Ray home from the hospital. However we must make daily trips to the hospital so that they can monitor his blood work & administer certain meds via an IV that he continues to need. Usually the daily visits are completed within a couple of hours but some days take much longer depending on if his blood work results dictates the need for additional meds via an IV. And some days he sees the doctors so that takes longer.
Today was a rather unusual day as the appointments were during the time that Tropical Storm Andrea rolled through here! We actually had to go to two different buildings; one to have an Echo Cardiogram done & then back over to the Moffitt Center for his regular blood work & infusions. It can be difficult enough on even a sunny day when trying to help Ray get there because he's pretty much wheelchair dependent right now, but attempting it during a rain storm while holding an umbrella, purse & my mini-suitcase of miscellaneous things I need for Ray added an extra challenge for us. While at the hospital the tornado warning sirens went off & the TV was reporting two tornadoes within three miles of us!
The storms didn't last too long so once the warning was over, I headed out to get a much needed haircut & run a few errands knowing that Ray's infusions would be at least two hours long & therefore I didn't need to be there. The rains continue & are expected to last through the night & into tomorrow so I guess we'll deal with it again tomorrow. The good news is we only have to go to one building & unless something changes (& you never know - it could) we shouldn't be at the hospital more than two hours.
So what is home life like now? Well, it would be a little better if we could just stay home all day but it is what it is. We are getting un-disturbed sleep at night now & that's sure nice! Unfortunately Ray isn't doing as well as we had hoped. His hands appear healed now & we've been able to get rid of the bulky bandages, however they are very sensitive now & pain him occasionally.
His mouth sores are healed but dang it - the pain in his esophagus when he swallows is worse now which makes eating anything solid almost impossible for him. Even trying to swallow water or milk shakes is so hard for him now. I keep trying to give him foods I think he might like & he thinks so too but often after one or two attempted bites, he just ends up staring at them for so long that I usually end up having to throw it away. The poor man knows he needs to eat but it's just so hard. He will look at me & tell me to quit pushing him. I try to explain that it's not 'pushing', but instead it's me trying to 'encourage' him.
Ray's back & chest has now broken out in more rashes & the itching drives him crazy at times. I am continually applying special creams to help alleviate the itching. The swelling in his legs & feet from fluid retention continues & in fact his feet are getting way worse now as the rashes are spreading more & the bottom of his feet are both forming painful blisters. This is why the need for a wheelchair. We try to keep his feet/legs elevated as much as possible & are using different ointments. We have very padded slippers too & I'm sure all this helps some, but not nearly enough. They tell us that this is just all going to take time to go away.
One thing I didn't realize was going to be a problem is that Ray is so cold all the time now. I'm guessing that's a result of the chemo. He's dressing in sweatpants & sweatshirts while I'm in shorts & thin blouses. Our comfort zones are totally different now. He claims that I'm freezing him to death while I'm sweating big time.
Ray is scheduled for his 6th bone marrow biopsy on Monday. We've been told that it will show what percentage of his stem cells are now from the donor & what percentage of his are left, if any.
Keeping track of all Ray's meds is a job. He is on so many now & they keep adding to them as things crop up. I have a large 7-day pill box that has slots for up to 4 times per day but when they change the doses and/or add meds, or take some away, that makes keeping the pill box right quite tricky.
I sit here thinking about all the things they told us to prepare us for what to expect could happen but one just really doesn't know what it's like until you actually go through it. And even I don't know because for the most part it's Ray going through the hard part. Thankfully he remains positive even though he has his moments. But amazingly, those moments are rare. And so we are still facing some challenges as we continue this journey but we will prevail.
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