Since things seem to have finally calmed down, I'm posting updates less frequently. That's a good thing!
We're about to wrap up 2013 & what a year it's been. One I wouldn't want to repeat but we made it though it & have hopes that 2014 will bring increased wellness for Ray. He is now almost eight months post transplant. It's hard to believe that much time has passed already.
As we continue frequent visits to the hospital so they can monitor his progress & take care of things that pop up, we watch a steady stream of new bone marrow transplant patients come in. This hospital does over 400 transplants each year. It feels strange to watch & listen to these new patients, most of which really don't have a clue what they're facing. We were once in their shoes going through the motions, listening to all the information given to us in an attempt to prepare us for what was to come. It's kind of like the difference between watching a canoe going through the rapids versus actually being in that canoe shooting the rapids yourself.
Then there are the ones who recently had their transplant & are now dealing with those never ending daily trips back to the hospital so that they can be taken care of with the oh so many things that seem to crop up. We sit & observe them all, ever grateful that phase is behind us.
Ray's biggest compliant currently is the severe dry mouth he's experiencing now. (part of the GVHD graft versus host disease) It affects his ability to taste & the lack of saliva causes everything to stick inside his mouth. There are other minor issues going on but nothing too serious that he can't deal with. He's ready to get back into the swing of things but that's gonna require baby steps for awhile yet.
Visits to the hospital are decreasing, knock on wood. All in all, Ray is doing well. Yes, there are still some issues he's dealing with but he claims that they're not a hill that a mountain climber like him can't climb...
Saturday, December 21, 2013
Thursday, October 31, 2013
6 Months Later...
I suppose it's time for an update to this blog since my last post was two months ago although most folks following this blog are probably my Facebook 'friends' too so you've kept up pretty much on a daily basis via Facebook. But for those of you that do not do the Facebook thing, this is for you.
It's now been six months since Ray had his bone marrow transplant. Life does indeed seem to be getting somewhat back to normal. It's a new 'normal' but we'll take it!
There seems to always be some little something or other to concern us a bit when it comes to his well being but fortunately we've always been able to work through it. For instance, about a month ago he decided he was going to help me disassemble something in the shed. The screwdriver he was using was rusted at its tip & he slipped causing it to slice his hand. He quickly washed the small puncture & applied antibiotic ointment & bandage. It healed quickly without any redness but two mornings later he awoke claiming his jaw hurt! My frantic internet search told me that the 1st sign of tetanus is lockjaw so off to the hospital we went. We spent most of that day there as the doctors conferred with each other to decide how to approach it. The concern was that all his previous immunizations were destroyed to make way for the new donor cells & he hadn't yet been re-vaccinated for tetanus. To make a long story short, they gave him his tetanus shot a month early & he did NOT have lockjaw!
A few other minor things include a skin rash all over his body that they treated with mega steroids, that he is just now finally being weaned off of. His hemoglobin drops & he occasionally needs boosted back up with some units of blood. His legs have been giving him problems on & off by cramping up when he walks so he's seeing a vascular surgeon in hopes of getting to the root cause & fix it. Next week he has a appointment with an eye specialist because one of his eyes is now bothering him. Apparently these are all common problems after a transplant. Nothing seems to surprise the doctors when we report new issues & they're ready to act upon them.
Ray is scheduled for another pulmonary function test & his 6 month bone marrow biopsy next week. That will be his 7th biopsy. The past couple of days he's developed a small cough but no fever. If it gets any worse we'll return to the hospital early for them to evaluate it & treat accordingly.
We were able to drive home to Indiana for a two week visit recently. It was wonderful! We were excited to be able to attend several of our grand-kids events while there (birthday party, cheer fest, soccer game, wrestling practice, etc.). Also attended a neighbor's wedding & saw LOTS of folks. We had several visitors stop by while home. Ray even got in a couple of nights of Pinochle card games with his best friend, our son & his friends dad. We met a close cousin of Rays (& her family) along with an aunt for supper one night. And another afternoon we met a few more cousins in Columbus, OH for supper together. We kept very busy & that's putting it mildly!
While home, we were able to bring Ray's dad home from his nursing home for the day on two occasions to spend some time with us. We also visited him twice at the nursing home. We brought Ray's brother Randy back with us to Florida for the winter. This has been his winter home in this park for over 30 years now. He's thrilled to be back here with us.
On our return trip to Florida, we had a wonderful visit with some of my relatives near Knoxville, TN where we spent the night at a close cousin of mine's home. Now that we are back at the park, things are getting more active here. Many of our snowbird friends have already returned & more are coming. It was good to return here because after seeing SNOW while home in Indiana, we knew we wanted to quickly return to a sunny warm place for the winter.
So now you have it - how we're doing now. We look forward to a calm but fun-filled winter. No doubt we still must take certain precautions to keep Ray well as he continues the journey but some restrictions have been loosened. He remains on immune-suppressant meds so we must still be very careful to avoid his getting sick. One hard thing will be keeping him out of the sun but we'll do our best. And when he asked the doctor if he could drink beer yet, he didn't like the doctor's reply. I don't need to tell you what that reply was! ;-)
It's now been six months since Ray had his bone marrow transplant. Life does indeed seem to be getting somewhat back to normal. It's a new 'normal' but we'll take it!
There seems to always be some little something or other to concern us a bit when it comes to his well being but fortunately we've always been able to work through it. For instance, about a month ago he decided he was going to help me disassemble something in the shed. The screwdriver he was using was rusted at its tip & he slipped causing it to slice his hand. He quickly washed the small puncture & applied antibiotic ointment & bandage. It healed quickly without any redness but two mornings later he awoke claiming his jaw hurt! My frantic internet search told me that the 1st sign of tetanus is lockjaw so off to the hospital we went. We spent most of that day there as the doctors conferred with each other to decide how to approach it. The concern was that all his previous immunizations were destroyed to make way for the new donor cells & he hadn't yet been re-vaccinated for tetanus. To make a long story short, they gave him his tetanus shot a month early & he did NOT have lockjaw!
A few other minor things include a skin rash all over his body that they treated with mega steroids, that he is just now finally being weaned off of. His hemoglobin drops & he occasionally needs boosted back up with some units of blood. His legs have been giving him problems on & off by cramping up when he walks so he's seeing a vascular surgeon in hopes of getting to the root cause & fix it. Next week he has a appointment with an eye specialist because one of his eyes is now bothering him. Apparently these are all common problems after a transplant. Nothing seems to surprise the doctors when we report new issues & they're ready to act upon them.
Ray is scheduled for another pulmonary function test & his 6 month bone marrow biopsy next week. That will be his 7th biopsy. The past couple of days he's developed a small cough but no fever. If it gets any worse we'll return to the hospital early for them to evaluate it & treat accordingly.
We were able to drive home to Indiana for a two week visit recently. It was wonderful! We were excited to be able to attend several of our grand-kids events while there (birthday party, cheer fest, soccer game, wrestling practice, etc.). Also attended a neighbor's wedding & saw LOTS of folks. We had several visitors stop by while home. Ray even got in a couple of nights of Pinochle card games with his best friend, our son & his friends dad. We met a close cousin of Rays (& her family) along with an aunt for supper one night. And another afternoon we met a few more cousins in Columbus, OH for supper together. We kept very busy & that's putting it mildly!
While home, we were able to bring Ray's dad home from his nursing home for the day on two occasions to spend some time with us. We also visited him twice at the nursing home. We brought Ray's brother Randy back with us to Florida for the winter. This has been his winter home in this park for over 30 years now. He's thrilled to be back here with us.
On our return trip to Florida, we had a wonderful visit with some of my relatives near Knoxville, TN where we spent the night at a close cousin of mine's home. Now that we are back at the park, things are getting more active here. Many of our snowbird friends have already returned & more are coming. It was good to return here because after seeing SNOW while home in Indiana, we knew we wanted to quickly return to a sunny warm place for the winter.
So now you have it - how we're doing now. We look forward to a calm but fun-filled winter. No doubt we still must take certain precautions to keep Ray well as he continues the journey but some restrictions have been loosened. He remains on immune-suppressant meds so we must still be very careful to avoid his getting sick. One hard thing will be keeping him out of the sun but we'll do our best. And when he asked the doctor if he could drink beer yet, he didn't like the doctor's reply. I don't need to tell you what that reply was! ;-)
Saturday, August 31, 2013
Tweaking the Meds
It's now been two weeks since Ray met that 100 day milestone so I thought it a good time to post another update to let everyone know how things are going now.
As I reported earlier, I was giving Ray his IV fluid infusions at home for a week. His kidney levels got back within range & I stopped. But alas, after stopping the infusions for five days, the levels began to climb again & so we began another round of home infusions. Finally it was decided that it must be his anti-rejection meds that was the culprit so we have stopped that particular drug & replaced it with another anti-rejection drug that is not known to affect the kidneys. He must remain on anti-rejection meds for at least a year & we can't keep on with daily IV infusions for that long. Initial blood tests show that stopping that drug has indeed corrected the levels.
However the new drug they have put him on is known to commonly affect the liver, as well as cause high cholesterol! That's not to say Ray will experience that problem but in the meantime he will need to continue going to the hospital for frequent labs to monitor his liver & cholesterol. I guess it's a trade-off & one must weigh the benefits vs risks.
Ray is doing much better these days. He still tires easily & must continue to take precautions. The anti-rejection meds are immune suppressants that hopefully prevent his body from trying to reject the donors stem cells. The longer he can prevent that from happening, the better chance he has down the road it won't ever happen. His appetite is very good & he is beginning to put those lost pounds back on.
So all in all, things are going well right now for the most part. Little things pop up from time to time but nothing too serious. We are grateful that the doctors are so vigilant about monitoring Ray's health & quick to act when things appear to be getting out of balance. We're looking forward to the day Ray can do away with some of his mountain of pills.
As I reported earlier, I was giving Ray his IV fluid infusions at home for a week. His kidney levels got back within range & I stopped. But alas, after stopping the infusions for five days, the levels began to climb again & so we began another round of home infusions. Finally it was decided that it must be his anti-rejection meds that was the culprit so we have stopped that particular drug & replaced it with another anti-rejection drug that is not known to affect the kidneys. He must remain on anti-rejection meds for at least a year & we can't keep on with daily IV infusions for that long. Initial blood tests show that stopping that drug has indeed corrected the levels.
However the new drug they have put him on is known to commonly affect the liver, as well as cause high cholesterol! That's not to say Ray will experience that problem but in the meantime he will need to continue going to the hospital for frequent labs to monitor his liver & cholesterol. I guess it's a trade-off & one must weigh the benefits vs risks.
Ray is doing much better these days. He still tires easily & must continue to take precautions. The anti-rejection meds are immune suppressants that hopefully prevent his body from trying to reject the donors stem cells. The longer he can prevent that from happening, the better chance he has down the road it won't ever happen. His appetite is very good & he is beginning to put those lost pounds back on.
So all in all, things are going well right now for the most part. Little things pop up from time to time but nothing too serious. We are grateful that the doctors are so vigilant about monitoring Ray's health & quick to act when things appear to be getting out of balance. We're looking forward to the day Ray can do away with some of his mountain of pills.
Sunday, August 18, 2013
100 Days!... But Who's Counting?
Today is
the “magical” Day 100 & is considered to be a significant milestone by the
doctors so I figured that I should acknowledge it here. It’s
mentioned a lot & some of you might wonder what is so special about it. At this point doctors can tell so much more
about how you're bouncing back from the worst effects of the transplant &
how your immune system is building back up, and can breathe a sigh of relief,
so to speak, if all is going well. It’s typically the point at which the
doctors allow some really back-to-normal living to take place.
One-hundred days ago, Ray & I
were sitting in isolation in the Bone Marrow Transplant ward, anxious but full
of anticipation about the journey ahead. Ray had completed his five days of
intense chemo that had primed his bone marrow for the new donor’s stem cells.
The infusion was quick and simple and uneventful, but the procedure was
potentially life-saving. Sitting there on day zero, Day 100 felt like an
elusive dream yet now it’s here!
Yes, Day 100 is what every bone
marrow transplant patient is striving for because ideally on this day they are
set free from the hospital regimen of weekly blood tests, check-ups and scans.
It means they have got through the 'danger period' and on their way to recovery
and independence. It is the day they walk out of the hospital and get on with
their lives. Today Ray is indeed breathing a little easier. Yet while he is no
longer in the hospital, he continues being monitored closely with on-going
blood tests & check-ups. We learned that although his white blood
count is good now, although it continues to fluctuate whenever medicines are
adjusted, we still must take reasonable precautions to keep him from picking up
germs that would cause him to become ill because he will be on immune
suppressant meds for at least a year or more to prevent his body from possibly
rejecting the donor cells.
We knew
that at 100 days there would not be some magical snap of the fingers and
everything would be back to normal, as if Ray hadn’t even been through the
process. He still has days when out of the blue his body will surprise him with
some new little ache or pain. Just yesterday his foot started bothering him
causing him to limp slightly, we noticed a few new odd looking spots on his arm
& he had some chest discomfort that kept coming & going. That will
probably pass & by tomorrow it may be something else. The truth is that
this is an on-going process and there could still be transplant concerns a year
from now.
Where is Ray
today? First
& foremost; Ray’s MDS (cancer) is GONE!
They tell us that the further away he is from the transplant date & the
bone marrow biopsies every 3 months continue to show no evidence of MDS, the
greater chance that it won’t show it’s ugly face ever again & he can
consider himself CURED.
Now his
body must recover from the process it took to make that happen. Because he did
experience some GVHD (Graft Versus Host
Disease) & was put on a large dose of steroids that seems to have
cleared it up, he now must be slowly weaned off those steroids. In the meantime
there are a few side-effects from that but we’re dealing with them. Lately his
creatinine levels (which indicates a potential problem with his kidneys) are
too high. Therefore he must drink tons of fluids each day to flush his kidneys
in an attempt to keep the levels at an acceptable range. I was taught how to
administer daily IV fluids at home. It takes 6 hours a day to pump those fluids
into him. I’m grateful that we were able to do this at home because it sure
beat spending each day at the hospital. His goal each day is to drink 100
ounces of fluid so that he doesn’t have to continue with the IVs.
Ray still
needs all those baby vaccinations to protect himself because the transplant
wiped out what he had. He received his 1st vaccination last week. We
continue to visit the hospital weekly for his labs as the doctor continues to
monitor things. It’s vital that they head off any problems if they arise before
they do serious damage. Ray’s appetite is getting better & his ability to
eat has improved although for some reason he is losing weight, down 25 pounds
from when he began this journey. He has lost a lot of muscle & is working
on getting his strength back now by exercising a little each day. He’s still
taking a boatload of pills every day, mostly as preventative measures for
conditions that he is now more susceptible to contracting such as pneumonia,
skin fungus, shingles, liver problems, etc. They are now beginning to
discontinue a few of those meds.
Is life
back to normal? Well, our life has a “New
Normal” now & even that is still trying to define itself. There are
lots of things we approach differently now; eating more healthy & avoiding
certain food establishments, a higher level of cleanliness (sanitizing & disinfecting
things we never really worried about before), avoiding exposure to sunlight as
much as possible (it can activate the GVHD), etc. We are grateful for where Ray is now compared
to where he was three months ago. Going through something like this will
certainly cause one to look at life & re-evaluate what is & isn’t
important. Each day is a gift.
Ray’s Day 100 as a milestone is
uneventfully over, but this just means he gets to create another. We’ve learned
that things often don't go as planned. Our journey is like sitting on a raft
being pushed down a river, and we simply have to go where the river takes us.
If we hit rapids, there is no sense in fighting, we simply have to ride it out
and have faith that Ray is going to get out the other side. Notice that I say
“we” because it is indeed a journey we are taking together. Ray is steering
this canoe & I am his rudder that guides him as best I can.
So, we
do hereby acknowledge the 100 days as a milestone, as the journey continues…
Tuesday, August 6, 2013
Tallying Up the Good
It doesn't seem possible that Ray is now at 'Day 88' post-transplant. I remember that first week of his transplant when the magical 'Day 100' milestone seemed oh so far off & now it's almost here!
As we were reflecting on what he has been through during that time, we took time to verbally tally up all the good things he's experiencing right now & rejoice in it; Things we took for granted in his pre-transplant life. Things like:
This journey continues & will for a long time yet. Ray has several tests this week as part of his ongoing followups. Basically it consists of various tests to see how his internal body is holding up to the intense drama its been put through & hope the damage control attempts worked! Monday he had a DEXA scan of his bones & Pulmonary tests. Tomorrow he goes in for another Bone Marrow Biopsy. I suppose there will be many more tests & follow-ups to ensure that any issues he may have are nipped in the bud before they can cause serious problems. His white blood count which gauges his immunity level is even better than mine now. Yeah!
Right now the doctor is slowly weaning him off of the high steroids he's been on to fight the case of GVHD he had. Unfortunately those steroids caused a few side effects that we are addressing now. The biggest concern is his kidney function levels. In an attempt to correct that, they've been giving him daily IV's of fluids & he's been drinking enough to drown an elephant in order to flush his kidneys. He's a trooper though cause I don't have to nag him about drinking as much as he can - he makes sure he's always got a drink in his hand. And that's NON-alcoholic.
This journey continues & we travel it hand in hand with each other.
As we were reflecting on what he has been through during that time, we took time to verbally tally up all the good things he's experiencing right now & rejoice in it; Things we took for granted in his pre-transplant life. Things like:
- No skin rashes
- The ability to walk unassisted & without pain
- No more tubes hanging out of his chest, thus can shower again without caution
- Beginning to actually look forward to eating meals
- Eating without mouth or stomach pain
- Getting out among people again without as much fear of catching something
This journey continues & will for a long time yet. Ray has several tests this week as part of his ongoing followups. Basically it consists of various tests to see how his internal body is holding up to the intense drama its been put through & hope the damage control attempts worked! Monday he had a DEXA scan of his bones & Pulmonary tests. Tomorrow he goes in for another Bone Marrow Biopsy. I suppose there will be many more tests & follow-ups to ensure that any issues he may have are nipped in the bud before they can cause serious problems. His white blood count which gauges his immunity level is even better than mine now. Yeah!
Right now the doctor is slowly weaning him off of the high steroids he's been on to fight the case of GVHD he had. Unfortunately those steroids caused a few side effects that we are addressing now. The biggest concern is his kidney function levels. In an attempt to correct that, they've been giving him daily IV's of fluids & he's been drinking enough to drown an elephant in order to flush his kidneys. He's a trooper though cause I don't have to nag him about drinking as much as he can - he makes sure he's always got a drink in his hand. And that's NON-alcoholic.
This journey continues & we travel it hand in hand with each other.
Tuesday, July 30, 2013
A Turning Point
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...
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...
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.
Wednesday, June 26, 2013
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
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
And so we will keep putting one foot in front of the other
& keep moving on...
.
Friday, June 21, 2013
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.
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.
Thursday, June 20, 2013
Tuesday, June 18, 2013
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...
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...
Sunday, June 16, 2013
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.
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.
Friday, June 14, 2013
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.
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.
Wednesday, June 12, 2013
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.
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...
Thursday, June 6, 2013
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.
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.
Sunday, June 2, 2013
Thursday, May 30, 2013
"Day 19" Transitioning for Home
Things are going ok today so far. We are hopeful that trend continues. Ray's doctor
told us this morning that he may possibly be released Sunday or Monday.
She keeps pushing it back but that's OK cause I don't wanna take him
home until he's ready! Possibly removing all these monitor & IV
connections today & will begin weaning him off some of the meds too as we
prepare to transition for the move home.
Last night was quite busy all throughout the night. They had bandaged Ray's hands because of all the blisters that were bursting & oozing. During the night the swelling in his hands went down enough to cause the bandages to come lose & even fall off so they had to come in & re-bandage them. Then he had some spells with severe pain just above his abdomen which they are contributing to gas maybe. That caused us to need the nurse to come in a couple of times & evaluate the situation. And then the monitor he's hooked up to had to act up a few times which required the nurse to come in & adjust it to stop the annoying beeping. Wouldn't you know too that for some reason Ray needs to get up to use the bathroom more during the night than the day! Oh & lets not forget his vitals that are taken at certain intervals, even a night. Between 3AM & 5 AM each morning they come in & draw blood so the doctor can review them when she does her rounds.
It will be nice to get home & have some undisturbed sleep.
Last night was quite busy all throughout the night. They had bandaged Ray's hands because of all the blisters that were bursting & oozing. During the night the swelling in his hands went down enough to cause the bandages to come lose & even fall off so they had to come in & re-bandage them. Then he had some spells with severe pain just above his abdomen which they are contributing to gas maybe. That caused us to need the nurse to come in a couple of times & evaluate the situation. And then the monitor he's hooked up to had to act up a few times which required the nurse to come in & adjust it to stop the annoying beeping. Wouldn't you know too that for some reason Ray needs to get up to use the bathroom more during the night than the day! Oh & lets not forget his vitals that are taken at certain intervals, even a night. Between 3AM & 5 AM each morning they come in & draw blood so the doctor can review them when she does her rounds.
It will be nice to get home & have some undisturbed sleep.
Tuesday, May 28, 2013
"Day 17" Staying Positive
So they say a picture is worth a thousand words. Just snapped this of Ray . The hair is all gone now but isn't he a cutie? He's hooked to wires on the right monitoring his heart, oxygen & breathing. On the left to an IV pole with several bags of stuff dripping into him. The hands have multiple large blisters caused from all the fluid retention & they're now erupting thus the wrapped hands.
Right now his throat sores are causing him the most pain. The wound specialist came in today to evaluate the sores & blistering on his arms & hands and tell us how we need to be treating those. She asked me if I would be willing to learn how to take care of them at home. Guess she doesn't know me very well does she? Of course I'll handle dressing them each day!
He pretty much parks himself in the recliner during the day, refusing to get back in the bed if he doesn't have to. He's not doing much walking of the halls anymore because of his wobbly legs & painful feet. They needed to up the pain meds so that makes him somewhat unstable as well. The swelling has subsided some now.
Through it all his sense of humor has remained intact. The nurses say he is a real trooper & they all just love to get assigned to him! And over the past 3 weeks we've been through lots of nurses. Even when he isn't their patient, they still make it a point to stop in & see how he's doing! What's not to love I ask you? :-)
I have hung up some of his cards around his daily progress calendar hanging in his room. He has received many more over the past couple of months. Between those & all the Facebook & email well wishes & prayers, it does make him feel loved. THANKS EVERYBODY!
Originally the doctor had thought that Ray would be able to go home today but it just wasn't meant to be. The blood counts are slowly rising so his doctor said this morning that the goal is to be able to release him from the hospital this Saturday. We hope so cause that would mean he's BETTER! By then she expects him to have turned around & gotten much better. So we're now starting on our 4th week here & hopefully the final week.
Subscribe to:
Posts (Atom)