We think we are now at a positive turning point - knock on wood. Ray's blood counts are looking very good now & his appetite is getting much better & his energy level is slowly rebounding & the various multiple rashes have calmed down considerably & he's not quite as cold all the time as he was. All positive changes!
Because of these positive turn arounds, we are slowly starting to get out & live life once more. We went to the movies & had lunch out one day. Went to an inside flea market & walked around one day, thinking this was good exercise. We also attended a Pot Luck dinner in our park. Yes, we still must be careful but not nearly as much as the past couple of months following the transplant.
The heat here in Florida is incredible. We try to take walks very early in the morning before the sun gets too high in the sky. Ray isn't suppose to expose himself to much sun & needs to apply lots of sunscreen before going out. We often take walks inside the hospital's long halls when we're done with his appointments.
Ray is trying to do more exercise to get his strength back. Although he didn't lose much weight through it all, he did lose a lot of muscle & stamina. He certainly feels a lot of tiredness at times if he over exerts himself. But overall, he's doing very well right now. Praying that continues...
Tuesday, July 30, 2013
Monday, July 22, 2013
Holding Our Breath
Can it possibly be that Ray's health may be turning around for the better? We think/hope so! He's now at 'Day 72' & although he's still experiencing some negative things, he's beginning to have better days. We hope that continues but we are definitely holding our breath for a bit yet.
He is experiencing the dreaded GVHD (Graft Versus Host Disease) of the skin. When it first started a little over a week ago, it didn't itch but that changed a couple of days later as the rash began to spread. We were back to going to the hospital every day. His doctor put him on a daily mega dose of steroids, along with the steroid cream he uses & another medicine to combat it. Thankfully it seems to be working. The itching finally subsided & the rash is calming down somewhat now. It still has a way to go.
Interestingly the doctor told us that developing GVHD is sort of a good thing. Say what!? Ok, so it's kind of an oxymoron. She went on to explain that it proves that the donor cells are working.
The chest catheter was removed a few days ago & replaced with a single port that lies underneath his skin. The purpose of the port is to make it easier for the continued blood draws & infusions he must still undergo over the next few months. They just easily poke through the skin to acess the port which is painless. The single port under the skin is so much better than having those three long lines dangling down his chest. When he was undergoing so much previously, the three lines were necessary when they were administering multiple meds via IV, plus one line was dedicated to infusing the anti-rejection med only. Now he can shower without fear of getting that contraption wet. A real shower - just one of the many things he took for granted. For those interested, this picture describes how the port works & how it looks in the chest. Actually, Ray's is less visible than the one in the photo below.
Ray had another endoscopy late last week too. The initial results look good. The ulcers in his esophagus are gone. We are waiting for the biopsy results of the stomach to see if there is any GVHD there that might explain a few issues he has.
After we left the hospital today Ray wanted to go to Burger King & indulge in a Whopper hamburger. That's the first he's ate anything outside of our house or the hospital in a very long time. He loved it!
Finally today at the hospital, it was decided because his labs looked much improved, as well as his blood pressure & there doesn't seem to be a need for the infusions right now, that we get tomorrow off! We head back on Wednesday at which time his condition will again be re-evaluated. We know there will be several medication adjustments over the next few weeks as they'll need to wean Ray off those mega steroids & other meds after they accomplish what they're meant to do with regard to his GVHD. So yes, we are holding our breath hoping nothing new develops that would cause more problems.
He is experiencing the dreaded GVHD (Graft Versus Host Disease) of the skin. When it first started a little over a week ago, it didn't itch but that changed a couple of days later as the rash began to spread. We were back to going to the hospital every day. His doctor put him on a daily mega dose of steroids, along with the steroid cream he uses & another medicine to combat it. Thankfully it seems to be working. The itching finally subsided & the rash is calming down somewhat now. It still has a way to go.
Interestingly the doctor told us that developing GVHD is sort of a good thing. Say what!? Ok, so it's kind of an oxymoron. She went on to explain that it proves that the donor cells are working.
The chest catheter was removed a few days ago & replaced with a single port that lies underneath his skin. The purpose of the port is to make it easier for the continued blood draws & infusions he must still undergo over the next few months. They just easily poke through the skin to acess the port which is painless. The single port under the skin is so much better than having those three long lines dangling down his chest. When he was undergoing so much previously, the three lines were necessary when they were administering multiple meds via IV, plus one line was dedicated to infusing the anti-rejection med only. Now he can shower without fear of getting that contraption wet. A real shower - just one of the many things he took for granted. For those interested, this picture describes how the port works & how it looks in the chest. Actually, Ray's is less visible than the one in the photo below.
Ray had another endoscopy late last week too. The initial results look good. The ulcers in his esophagus are gone. We are waiting for the biopsy results of the stomach to see if there is any GVHD there that might explain a few issues he has.
After we left the hospital today Ray wanted to go to Burger King & indulge in a Whopper hamburger. That's the first he's ate anything outside of our house or the hospital in a very long time. He loved it!
Finally today at the hospital, it was decided because his labs looked much improved, as well as his blood pressure & there doesn't seem to be a need for the infusions right now, that we get tomorrow off! We head back on Wednesday at which time his condition will again be re-evaluated. We know there will be several medication adjustments over the next few weeks as they'll need to wean Ray off those mega steroids & other meds after they accomplish what they're meant to do with regard to his GVHD. So yes, we are holding our breath hoping nothing new develops that would cause more problems.
Saturday, July 13, 2013
Shingles Scare!
Today marks Ray's 'Day 63' since his transplant. Many things are getting better for sure but I was concerned this morning when small blisters began appearing among his rashes in various places on his body. They didn't itch but I just had a gut feeling that he was coming down with the dreaded Shingles! It's extremely common for transplant patients to develop Shingles. In fact they put them on medicine to hopefully prevent it immediately after the transplant. While he was at the hospital today the blisters & rashes were looked at & the initial verdict is that it is NOT Shingles, thankfully. Rather they believe it is GVHD (Graft Versus Host Disease) of the skin. They will be watching it closely to hopefully prevent it from getting out of hand. In the meantime we will treat with steroid creams.
Ray is on many meds to prevent many things. Sadly there are often undesirable side-effects to many of these meds & Ray is experiencing a few of them. It seems strange to intentionally give a med to reduce a person's immunity but they do. My understanding is that these immunosuppressive drugs are mainly used to reduce the activity of the patient's immune system to prevent rejection (attack of a donated cells thinking the donees organs are foreign - aka GVHD). The immunosuppressive drug increases the risk that you will get a serious infection. Ray's white blood cell counts had rebounded beautifully but now they are heading back down to the danger level. I suppose there is a fine line with trying to balance his immunity levels by not allowing it to be so good that it causes GVHD.
We think Ray may be experiencing GVHD of the gut now too, although the doctor has not determined that yet. Initial tests did not show it but he's having an awful lot of stomach issues that aren't letting up. Most bone marrow transplant patients experience GVHD to some extent. In fact a nurse told us she has never met a patient that escaped it. As I delve more into the subject & read the symptoms, I realize that Ray has already had a lot of them! Even though the doctor doesn't feel it's GVHD, it sure sounds like it to me. "If it looks like a duck & quacks like a duck..." This link will provide more information on it: Click here for more on GVHD
We made daily trips to the hospital the first half of this past week for Ray's daily infusions of fluid, magnesium & an antibiotic. It was decided Wednesday to reduce the visits now to just Saturday's & Wednesday's. Ray's magnesium levels aren't where they need to be because of some of the meds pulling them down so his magnesium pills he takes at home was increased. However we think that's what's causing the bathroom issues he's having. Apparently that's common. So it might not be that he's lactose intolerant after all? Geeze, if it's not one thing, it's another.
Now for a little good news! Ray's kidney levels are ok now. His appetite is returning somewhat although he does get bloated rather quickly after a meal so we'll try smaller more frequent portions. The rashes don't itch so that's a plus! He is walking more now & at a brisker pace. We are trying to get out a little more. In fact I went up to the swimming pool for a bit the other day while Ray sat in the shade doing his crossword puzzle while I swam. And yesterday I even went up to the Club House & played dominoes with some of the ladies while Ray sat at a nearby table, again with some crosswords.
Knock on wood, this Thursday they will be removing that annoying catheter from his chest & replacing it with a port that lies under his skin. They feel it's still necessary to have a port because they will still be drawing blood on a weekly basis & if they need to give him transfusions, etc. it will be much easier to simply access the implanted port instead of constantly sticking him with needles.
Ray is trying so hard to feel good. Usually when he awakes in the morning, he feels half way decent but often by afternoon he starts getting uncomfortable again. Some days he doesn't have much pain or discomfort, but then there are other days when he's not so lucky. In the meantime, we're holding on...
Ray is on many meds to prevent many things. Sadly there are often undesirable side-effects to many of these meds & Ray is experiencing a few of them. It seems strange to intentionally give a med to reduce a person's immunity but they do. My understanding is that these immunosuppressive drugs are mainly used to reduce the activity of the patient's immune system to prevent rejection (attack of a donated cells thinking the donees organs are foreign - aka GVHD). The immunosuppressive drug increases the risk that you will get a serious infection. Ray's white blood cell counts had rebounded beautifully but now they are heading back down to the danger level. I suppose there is a fine line with trying to balance his immunity levels by not allowing it to be so good that it causes GVHD.
We think Ray may be experiencing GVHD of the gut now too, although the doctor has not determined that yet. Initial tests did not show it but he's having an awful lot of stomach issues that aren't letting up. Most bone marrow transplant patients experience GVHD to some extent. In fact a nurse told us she has never met a patient that escaped it. As I delve more into the subject & read the symptoms, I realize that Ray has already had a lot of them! Even though the doctor doesn't feel it's GVHD, it sure sounds like it to me. "If it looks like a duck & quacks like a duck..." This link will provide more information on it: Click here for more on GVHD
We made daily trips to the hospital the first half of this past week for Ray's daily infusions of fluid, magnesium & an antibiotic. It was decided Wednesday to reduce the visits now to just Saturday's & Wednesday's. Ray's magnesium levels aren't where they need to be because of some of the meds pulling them down so his magnesium pills he takes at home was increased. However we think that's what's causing the bathroom issues he's having. Apparently that's common. So it might not be that he's lactose intolerant after all? Geeze, if it's not one thing, it's another.
Now for a little good news! Ray's kidney levels are ok now. His appetite is returning somewhat although he does get bloated rather quickly after a meal so we'll try smaller more frequent portions. The rashes don't itch so that's a plus! He is walking more now & at a brisker pace. We are trying to get out a little more. In fact I went up to the swimming pool for a bit the other day while Ray sat in the shade doing his crossword puzzle while I swam. And yesterday I even went up to the Club House & played dominoes with some of the ladies while Ray sat at a nearby table, again with some crosswords.
Knock on wood, this Thursday they will be removing that annoying catheter from his chest & replacing it with a port that lies under his skin. They feel it's still necessary to have a port because they will still be drawing blood on a weekly basis & if they need to give him transfusions, etc. it will be much easier to simply access the implanted port instead of constantly sticking him with needles.
Ray is trying so hard to feel good. Usually when he awakes in the morning, he feels half way decent but often by afternoon he starts getting uncomfortable again. Some days he doesn't have much pain or discomfort, but then there are other days when he's not so lucky. In the meantime, we're holding on...
Monday, July 8, 2013
Things They Don't Tell You
I just realized that I shared this on my Facebook wall but failed to include it in my blog;
OMG! The things they don't tell you that you learn later. Not that knowing ahead of time would change anything. Ray was noticing his fingernails seem to be deteriorating at the nail beds so I googled it. Lo & behold, chemo can cause finger & toenail loss. Makes sense since hair & nails are basically made up of the same elements. And indeed, the doctor confirmed that he will probably lose them but they'll grow back. Oh my...
So I see this poster below & like it very much. But right now Ray & I are waiting for the thunder & lightening to stop! We know a rainbow will surely appear soon & that behind every cloud is a silver lining...
OMG! The things they don't tell you that you learn later. Not that knowing ahead of time would change anything. Ray was noticing his fingernails seem to be deteriorating at the nail beds so I googled it. Lo & behold, chemo can cause finger & toenail loss. Makes sense since hair & nails are basically made up of the same elements. And indeed, the doctor confirmed that he will probably lose them but they'll grow back. Oh my...
So I see this poster below & like it very much. But right now Ray & I are waiting for the thunder & lightening to stop! We know a rainbow will surely appear soon & that behind every cloud is a silver lining...
Sunday, July 7, 2013
Never Ending Hospital Visits
Here Ray is now at Day 57 Post Transplant & by now he should have been down to only once a week visits at the hospital for weekly labs. Last week we started feeling like that was finally getting closer to happening when they told Ray he only needed to come Monday, Wednesday, & Friday. Guess that wasn't meant to be because wouldn't you know that the very first morning we weren't scheduled to go, we received a phone call telling us a blood culture identified bacteria & they wanted him back so they could start him on antibiotics via an IV. That was suppose to happen every day for several days but when we returned for the second day of that IV & he was hooked up to it & only ten minutes into it, the nurse came flying in to shut it down because the blood results that morning showed that the antibiotic was having negative effects on his kidneys! After they did another culture, the results did not show the bacteria any longer so they believe it was just in one of the catheter lines & it was resolved.
Sadly though we are still making daily trips to the hospital because now his kidney levels remain high so they are watching it closely. They changed some meds around that require one of them to be giving intravenously now & because of the effects on ones kidneys, they also want to give him extra fluids to keep them flushed. Anyhow, we are averaging 4 to 5 hours daily at the hospital now at least through this Wednesday at which time they will re-evaluate Ray's status & decide where to go from there.
I have kept Ray off of lactose products now for a couple of weeks & it did seem to help a little but not nearly enough because he's still having stomach issues so I'm leaning toward thinking it's something else causing his problems. But being on so many medicines, it's very difficult to pin-point which med it might be. I'll re-introduce regular dairy products in another week & see what happens. I'm hoping it doesn't make matters worse. Poor guy is already nervous when leaving the house for fear he'll be caught out somewhere that he can't get to a restroom in time.
Oh & that rash problem Ray had that we thought was getting better - well it did seem to for a bit but not anymore. It is spreading on down his legs now. We keep treating it with special prescription creams but it doesn't stop it from spreading. It's kind of strange because part of it heals & the skin peels off, yet the rash continues to reach further & further outward. They tell us it's a result of the chemo & we have to wonder how long the rash will continue.
It's a good thing that there's nowhere we need to be or anything we have to do or be responsible for now, allowing us to deal with all this. When the doctor tells us to come, we can come. When they tell us that instead of the 15 or 20 minute hospital visit we were expecting, we now need to stay 3 hours or more, we can just say "ok". Today while Ray was getting his infusions I was able to take the car to get the oil changed & tires rotated & run some other needed errands.
Early on in this journey when we were learning of what to expect, we were 'talking the talk' as we tried to explain it to others. That was easy. But now we are certainly 'walking the walk' which is quite a bit harder & we'll keep on as long as it takes to beat this thing! Ray handles is much better than I would if I were in his shoes. He is amazing.
Sadly though we are still making daily trips to the hospital because now his kidney levels remain high so they are watching it closely. They changed some meds around that require one of them to be giving intravenously now & because of the effects on ones kidneys, they also want to give him extra fluids to keep them flushed. Anyhow, we are averaging 4 to 5 hours daily at the hospital now at least through this Wednesday at which time they will re-evaluate Ray's status & decide where to go from there.
I have kept Ray off of lactose products now for a couple of weeks & it did seem to help a little but not nearly enough because he's still having stomach issues so I'm leaning toward thinking it's something else causing his problems. But being on so many medicines, it's very difficult to pin-point which med it might be. I'll re-introduce regular dairy products in another week & see what happens. I'm hoping it doesn't make matters worse. Poor guy is already nervous when leaving the house for fear he'll be caught out somewhere that he can't get to a restroom in time.
Oh & that rash problem Ray had that we thought was getting better - well it did seem to for a bit but not anymore. It is spreading on down his legs now. We keep treating it with special prescription creams but it doesn't stop it from spreading. It's kind of strange because part of it heals & the skin peels off, yet the rash continues to reach further & further outward. They tell us it's a result of the chemo & we have to wonder how long the rash will continue.
It's a good thing that there's nowhere we need to be or anything we have to do or be responsible for now, allowing us to deal with all this. When the doctor tells us to come, we can come. When they tell us that instead of the 15 or 20 minute hospital visit we were expecting, we now need to stay 3 hours or more, we can just say "ok". Today while Ray was getting his infusions I was able to take the car to get the oil changed & tires rotated & run some other needed errands.
Early on in this journey when we were learning of what to expect, we were 'talking the talk' as we tried to explain it to others. That was easy. But now we are certainly 'walking the walk' which is quite a bit harder & we'll keep on as long as it takes to beat this thing! Ray handles is much better than I would if I were in his shoes. He is amazing.
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