Putting One Foot in Front of the Other

Ray is now on Day 46. It was a rough time getting here but we feel that just maybe things are starting to slowly get better. At least we hope so for it's about time! That's not to say things are necessarily good yet but 'good' is a whole lot closer than it was.

There's still lots of medicines to take but we have eliminated a couple this week as the doctors tweak the need for them.  The latest development is that we believe the chemo may have caused Ray to become lactose intolerant as evidenced by problems he's been having with his stomach after eating which causes him to need to stay in close proximity to a bathroom. I had put him on Lactose Free Milk for a week & he seemed ok but when that carton was gone & things seemed to have settled down, we went back to regular milk thinking that he's never had a problem with lactose before. No sooner than we did, boom - the problems returned! We aren't positive that's the cause since he's on so many meds that could cause such side effects, but it's a good guess. Therefore he will remain on this lactose free diet for two weeks & see how it goes. Then we'll test the waters by re-introducing regular milk again & see what happens.

Ray's feet are aggravating him still as the whole top layer of skin is now peeling off in mass, leaving very sensitive skin underneath exposed. The bottom of his feet are the worst because that's where walking puts the most pressure. I don't think he'll be running around the house or outside barefoot anymore! He is trying to walk more because exercise is so important to getting him back to better health. The heat here in Florida right now is horrible so unless we can walk early in the morning or late in the evening, he won't get much walking accomplished.

The rashes are still bothering him but seem to be slowly getting better. Eating is going a little better too as the ulcer pain seems to be easing up. Oh, there are a few other things that are causing some distress but in the scope of things, they're manageable.

Unfortunately Ray is cold all the time now. They tell us that chemo often causes that & it will probably be that way for awhile. Ray's daily dress is long sweat pants & a hoodie jacket. Even with that on, he'll still want a blanket over him claiming that I'm freezing him to death. I have the AC set on 83 degrees & I'm in shorts & a sleeveless top. Ok, so maybe I should have sympathy on him & turn the AC up to 90?

Finally today at the hospital, the doctor has decided to cut Ray's visits down to only three days a week for his labs & checkups. Then if all goes well for a week or so, that will be reduced to just ONE weekly visit! We pray that nothing new pops up to change that!!!!

Follow up to above post; Thursday noon
 You have GOT TO BE KIDDING ME! Just got a call from hospital. Yesterday's culture showing bacteria so they want Ray back at the hospital right away to get him started on an IV of antibiotics! And we thought we'd get today off! :-( DANG!

And so we will keep putting one foot in front of the other 

& keep moving on...

.

Discarding the Wheelchair

Today was the first day in a couple of weeks that Ray didn't need to use the wheelchair to get back & forth at the hospital. We are so hoping he doesn't ever need it again! The swelling in the feet has subsided & although his feet still bother him quite a bit, it's not nearly as bad as it was. He's now wearing some of those compression stockings for awhile. What a job it is to put those things on!

We still continue to visit the hospital every single day but hopefully that will lessen soon. It's just that Ray seems to get one problem resolved & no sooner than he does, something else creeps up. The latest now is some really painful rashes in a few unmentionable places. Yesterday the doctor prescribed some powder to treat it but instead it made it so much worse. He says he's on fire & it looks it. So we've discontinued that & moving on to Plan B.

The Endoscopy that Ray had this week showed an ulcer in his esophagus that's causing all his pain when he tries to eat. He's is on medicine to hopeful take care of that but it's slow go. 

Oh & that tooth of mine; The dentist said he could put a crown on my tooth that broke for $1,200. (Lost 1/3 of tooth). I convinced him to just smooth down the rough edges of the cuspid part that had broke off & save me the expense! Worked for me.

The weather here is really getting HOT now. "Hotter than the 4th of July". I can't believe that's less than two weeks away. I had thought about parking Ray in the shade for 20 or 30 minutes today beside the pool  while I swam a bit but the rain & thunder nipped that idea in the bud. So we both ended up taking a much needed nap this afternoon. 

100% Donor Good Cells & No MDS!

BEST news so far! Ray's last bone marrow biopsy shows that his marrow is now 100% the donors GOOD stem cells AND there is no evidence now of MDS! Praise the Lord! We realize we aren't out of the woods just yet because the doctors now have to watch that the donors cells don't try to attack Ray's body (Ray being foreign to donor cells) which is referred to as "Graft Versus Host Disease" (GVHD) BUT the transplant did what it was suppose to do by replacing Ray's bad cells with donors good ones!

 More information & details later after we meet again with the doctor. Just no time right now...

Some Days the Load is Heavy

Gosh, things can sure be crazy & leave me just shaking my head wondering how in the world I'll ever keep things straight. It's only Tuesday & already this week looks to be a long difficult one. Because of various things occurring with Ray's medical situation, what was suppose to only be 3 short visits this week to the hospital for routine labs is now turning into every day, all day long there.

Sunday afternoon Ray began feeling really bad - more than usual. He had been doing pretty good with getting enough to drink each day & his appetite seemed to be slowly turning around. That all began to change Sunday when he began having a lot of problems eating & drinking. What little he attempted just wouldn't stay down. And if the food or drink wasn't coming out one end, it was coming out the other! The poor guy was miserable. Needless to say he was quickly becoming dehydrated. Trying to keep down the pills he needs in his system was challenging too. There's one med that he needs that is in liquid form with the look & consistency of mustard, that is horrid. He literally gags just looking at that one. It was prescribed as an alternative to the one that caused his previous severe joint pain & it's the only alternative they have so I'm trying to camouflage it in puddings or other things that he can possibly tolerate, but that doesn't always work.

By Monday Ray was as weak as a kitten & we spent most of the day at the hospital as they tried to help him get re-hydrated & figure out what might be going on. His issues continued Monday night & he got very little sleep. Today (Tuesday) was another long day at the hospital as they pumped more fluids into him & discussed ways to approach his compounding issues. 

One of the cultures they had done on Monday showed that he had indeed developed a virus that about 40 to 50% of transplant patients do develop. That may be what has triggered these recent ailments. And it may also explain the problems he's having in his GI tract. The pain he continues to have in his esophagus when he swallows may be related.  So they have again switched some meds around to combat it, hoping it clears up the virus AND the other ailments. Time will tell. Basically it's all a guessing game sometimes.

When I went to the pharmacy to pick up the new med, I was told that insurance doesn't normally cover that med & if they didn't, the two week supply would cost us $4,900. out of pocket! Say what!!! The good news is that insurance did agree to cover it - Whew! So I am again changing the pills in the pill box today as even more adjustments are made.

Ray will need to have an Endoscopy done this week to view his GI tract to find out what's going on. The doctor suspects his problem with the pain in his esophagus may be more than the mucositis that occurred shortly after the transplant. That should have cleared up by now.

For those of you reading my blog here that do not follow me on Facebook, let me tell you what happened to ME last Thursday evening; I was enjoying a nice bowl of ice-cream that had peanuts in it. Went down really good but as I was taking my empty bowl to the sink, I noticed a back tooth felt really odd as I ran my tongue across it. Bottom line is that I either swallowed a crown or half a tooth! And wouldn't you know the dentist I use here was out of the office until the following week attending a dental convention. 

Anyhow, I have a dental appointment Thursday to see what's to be done. Thinking I may just end up telling them to pull the rest of the tooth & be done with it. Now to figure out how to fit in my dental appointment around all of Ray's hospital appointments. For I have no doubt he'll have one that day. I just hope that if I end up getting my tooth pulled, that I can drive myself afterwards. I don't see why I couldn't. Oh well, I'll figure it all out. My friend Donna has agreed to help me out Thursday with getting it all accomplished. She can take care of Ray while I make it to that dentist appointment. Sure hoping that I don't have any problems if I end up having it pulled, cause if there's one thing I sure don't need right now, it's any more problems...

We Keep on Keeping On

It's Father's Day today & I have been blessed to have married a man that was & is a wonderful father to our children. He has always been there for them throughout their lives doing all the things that father's should do with them. And for the last several years he has been doing things for our grandchildren that makes him the greatest Grandpa too!

Ray has hit a bump in the road right now but is pushing forward to get back to doing all the fun stuff he loves to do with our kids & grandkids. Yes, he is struggling right now trying to get past all these medical ailments that continue to pop up. The feet & eating remain a very big problem for Ray. The doctors are doing their best to try & get all his various medications working like they should without side effects but that's quite a challenging balance act. Dosages are continually being adjusted as his blood counts bob up & down on a daily basis. How he feels varies from day to day as well. Some days aren't too bad, while others aren't too good.

While driving home this morning from his hospital visit, I heard a country song with the words "I keep on keeping on" & thought now THAT is going to be my next blog post title!

Love this photo that was taken just two months ago.

Uphill Today

Ray is so much better today! The joint pain has subsided a lot making his & MY life more bearable. It truly was a rough couple of days but fortunately the med that was causing it has been stopped. Still some issues to overcome but we're on our way! 

Right now there is mainly just two things we really need to get through. Both his feet remain swollen & full of blisters & rashes, making walking difficult. The swelling seems less in the morning but by afternoon, it's back. The daily trips to the hospital require him to be up & on them somewhat which doesn't help.

The other problem is his inability to eat solid food because his esophagus is still painful from the mucositis sores. He is reduced to lots of Boost drinks, Cream of Wheat & whatever else I can think of that has no lumps in it that he's willing to eat. Just the slightest bit of lump in foods hurts him. I need to get protein in him to combat the fluid retention he has so I made up some jello with lots of cottage cheese in it & ran it through the blender to make it smoother. Guess that'll be supper for him tonight.

Oh & the drinking of fluids is going very well too! He's really giving it his all.

A Dip in the Roller Coaster Ride

It's so strange how this ride is going. Ray wakes up in the morning & usually feels like it's going to be a good day but unfortunately by afternoon his opinion has changed. A lot of that has to do with the daily trips to the hospital for various infusions & lab work as they monitor his status. Because his feet are still very painful from the swelling, blisters & rashes, being on them doesn't help the matter. And often the hospital visits end up lasting much longer than anticipated. This particular morning Ray did NOT feel like it was going to be a good day. In fact I was afraid that he might be re-admitted to the hospital before the day was over.

This past Monday during the night Ray awoke complaining of joint pain in his knee & in one of his fingers on one hand but he was able to tolerate it. Then Tuesday while at the hospital getting an infusion, his thumb too began to ache. That was very odd. The doctor checked it out but wasn't really sure what was going on. After returning home as the evening wore on, many other joints in his body began to cause him pain. By 1 AM he was hurting really bad in most of his joints (both knees, all his fingers, wrists, shoulder, jaw, etc.) The pain meds were not helping at all so I phoned the hospital. They doubled his pain meds but the pain was still so bad. The poor man was in agony & could barely get up, let alone walk. The joint pain was no longer tolerable.

Today we were at the hospital the entire day getting various infusions & lots of blood work done in an attempt to identify any problems going on. We won't have those results for a couple of days. In the meantime it was determined that a new medication Ray had begun taking just three days prior to the joint pain symptoms showing up, may possibly be the culprit. They immediately stopped that med & replaced it with something else. However it will take a few days for that particular med to clear out of his system before we'll know if that was indeed the cause. Let's hope it was & the pain stops! But dang it, he had a dose of it this morning before we went to the hospital so I suspect the pain will continue tonight for sure. They gave him some meds in an IV today that hopefully will help alleviate some of the joint pain, plus the increased pain meds to see him through. We were glad they did not decide to re-admit him but it may be another long night because it's now almost bedtime & he is still hurting quite a bit.

Other medications were also adjusted. Keeping track of the many many pills Ray must take is challenging to say the least! Mainly because they change daily. Stop this one, start that one, change the dose of the other one, etc. Makes the handy dandy pill box I have kind of a joke. No sooner than I have it all set up, I must go through & remove pills, add pills and/or reposition pills for a different time of day, etc.

The doctor told Ray today that he must work harder to increase his fluid intake. That seems to be such a struggle for him. I'm trying to be creative in the drinks & he's promised to try harder. Otherwise he'll need to continue the IV's to get more fluid into him. A new method we plan on trying, as suggested by the doctor, is for me to set out each morning the minimum amount he needs to drink (3 quarts) & then it's up to him to do it. Ray has agreed to that idea & understands the importance of it & that it will be up to him to get-er-done. I like that idea because then Ray can no longer claim that I'm 'pushing' him too much. All I can do is all I can do...

Ray understands that my 'pushing' is for his own good & even though he may occasionally get frustrated with me, that's rare & he truly is grateful that I'm here for him. He often tells me so. He knows it's out of love & concern that I keep on him to do the things he needs to do to get through this. That's my job.

First Week at Home

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.

Released from Hospital

Finally after four full weeks at the Moffitt Cancer Center, Ray was released to go home!  Granted we have to return EVERY day for couple of weeks & then the visits should decrease somewhat over time. Ray was slightly nervous leaving his hosp rm & comfort level where he had 24/7 nurses at his beck & call but he's adjusting.  

The doctors will continue to monitor him closely for any issues that crop up & we're told they usually do as he continues to battle the side effects of the intense chemo he had. Plus they will be on the lookout for any signs of rejection & GVHD (Graft versus Host Disease) whereby the donor cells attempt to attack Ray's body. The good thing is that because Ray's donor was a 10 for 10 match & the same blood type, those type of issues are somewhat less likely. Keep those prayers coming folks!

Several of the issues Ray had as a result of the chemo (not the transplant itself) are subsiding. The mouth/throat sores are less painful although not completely gone yet.  Most of the horrible blistering on his hands have now burst & drained. The top layer of skin is peeling off in huge chunks exposing a second layer of new skin. We are treating his hands with antibiotic creams & keeping the hands dressed with gauze until all the open wounds have completely healed. This is very cumbersome for Ray because it limits what he can do without the complete use of his hands & the need to keep the bandaging dry, such as bathing, brushing teeth, using bathroom, etc. But I'm able to assist him when needed.

Some newer developments now include a lot of itching on his back where a rash appeared so we keep smearing hydro-cortisone cream on there. His arms also had a pretty healthy rash & that top layer of skin has completely peeled off now. But of great concern for us right now is the pain & blistering that is beginning to occur on the bottom of his feet making walking more challenging. We fear that may go the way his hands did with the blisters getting worse & eventually bursting. 

Because of his bandaged hands, he can't manage buttons & zippers so  after we got home yesterday I realized that I needed to make a run to get him some shorts with elastic waistbands. The doctors want him to take daily walks for exercise so he needed a few long sleeve shirts too. Any sun exposure is a no-no. And because of the issue with his feet, I also picked him up a new pair of slippers that that he can slide on & that has a lot more cushioning to them. A big thank you to my backup caregiver, Donna Holbrook, who came quickly to sit with Ray while I ran those errands. Donna & I learned in the Caregiver Class that Ray should not be left alone for any length of time over the next couple of months so Donna is going to be my lifesaver when I must run errands.

So many precautions we must still follow; Lots of pills to keep track of,  everything must be sanitized & cleaned daily, (I have sanatizer & disinfectant wipes EVERYWHERE) his temperature checked at least twice a day, foods prepared in special ways, etc. He still has a lot of swelling in his legs, feet & stomach from fluid retention that we are hoping subsides soon. We try to keep his feet elevated as much as possible day & night.

Thankfully our insurance coverage has been good about taking care of many things like the walker, periodic home nurse visits, medical supplies I need here at home for Ray (bandaging supplies, syringes to flush his catheter lines in his chest, etc.)

How does Ray feel now that's he's at home? I can probably better answer that after a week has passed. As expected he is very weak & shaky of course & probably will be for awhile yet. Right now I'd imagine he's still nervous but I'm hoping that with the daily monitoring that will be done each day during the hospital visits, that will ease his mind. And mine too! But as of right now, we're GOOD!