Three Years Later

It’s hard to believe that it’s been three whole years since Ray was going through the process of preparing for his bone marrow transplant that occurred on May 10, 2013. We are thankful he made it through it and successfully came to the point he is at now. There isn’t much he can’t do now days. He is off all but one of the many meds he used to be on as a result of his transplant. His doctor wants to keep him on the med that hopefully will prevent him from getting shingles.

The good news that I want to share with others that might be facing a similar procedure is that there can be a full life after a transplant! Sure there were times when we wondered about that but time has dispelled that worry. Ray feels great! He is very active again, sometimes to the point I worry a little bit. But then I seem to be a worrier by nature. I still get anxious when he gets even a scratch or into too much dirty stuff. He’s back to his old self playing tennis three days a week, gardening, hunting, golfing, shuffling, attending the grand-kids many activities, etc. There’s no slowing him down now!

Ray feels good too. He has his healthy appetite back. And he has just now begun to drink an occasional beer when out socially with friends. His hair never did come back in like it was. There’s hair there but it’s so fine & sparse that he must keep it shaved to keep from looking like a duckling.

Do we ever relax and think his cancer can’t come back? Well no, the thought is always in the back of our minds but we don’t worry about it. We often wonder where he would be today if he had not had the bone marrow transplant and had let nature take its course.  Would he still be alive? Would he be feeling really weak and bad? Or would he still be feeling fine? We wonder because when he was first diagnosed with MDS (Myelodysplastic Syndrome) he had no outward symptoms. He felt perfectly fine. It was his annual blood work that alerted the doctor that something was terribly wrong and then the bone marrow biopsy confirmed it.

From that point on things moved rapidly to get help to cure him before it was too late to do anything about it. Had he waited he might not have been a candidate for a transplant. After a certain age they tend to not put a person through it because it’s a very difficult thing to go through. Plus you must pass numerous medical tests to be assured you are fit enough to endure the many possible complications that could occur.

So yes, we are indeed thankful to be where we are today. Alive and enjoying retirement together.

16 Months Later but Who’s Counting?

Gosh, I remember when I use to update this blog on a regular basis but now I’ve pretty much let it fall by the wayside. In many ways that’s probably a good thing because it means that Ray is not experiencing near the complications he did during the 1^st year following his transplant. We returned to our Indiana home in mid April & health wise Ray seemed to be progressing fairly well most of the summer. Until lately.

A few weeks ago his legs began swelling again. Mostly during the day & then at night they would go back down. Then they began hurting him during the day & swelling even worse to where he could hardly walk on them without a lot of discomfort. He began running a low grade fever, often just at night. I’d give him some Tylenol & the fever would subside. Was so strange. And then he developed a nagging dry cough that persisted. Ray’s appetite was not good either & he lost 10 pounds in two weeks time & he began experiencing more fatigue. Ok, time to seek some medical help.

For two solid weeks we were either at a doctor’s office or hospital every single day trying to figure out what was going on. Visits to the oncologist, vascular surgeon, cardiac doctor, pulmonary doctor, as well as the hospitals for vascular leg scans, echo-cardiograms, pulmonary testing, lung endoscopy, cat scans, labs, etc. Next week he goes to see the gastroenterologist & have some more procedures done, all in an attempt to rule out various causes. 

In the meantime the compression stockings he was fitted with seem to be helping immensely with the leg swelling. The echocardiogram of his heart revealed fluid around his heart & so far the doctor says that he doesn’t want to drain it unless it gets worse. Sometimes that can be the cause of leg swelling but the doctor didn’t think in his case it is. The vascular scan of his legs did not reveal any clots thankfully. The CT-scan reveled inflammation in several areas of his stomach. That may be the ‘Graft vs Host Disease’ showing its ugly face which is common after bone marrow transplants. The lung endoscopy did not find anything conclusive, yet the dry cough continues.

As I read back over the journal I kept from last summer immediately after his transplant, I realized he had gone through many of the same symptoms then. Eventually they cleared up & he began feeling better. We are sure hoping that he will get through this episode as well. Something tells us that this may be how it’s going to go from here on out with these episodes coming & going? He’s not letting it slow him down too much currently, but for a couple of weeks it sure did.

Ray joined the local fitness center when we returned to Indiana to help gain back some of his muscle & lost strength. He tries to work out at least every other day there & is now able to do so much more than he did when he first joined, gradually increasing the weights & exercises he does. He also has been doing more around our house than when we first got home. His hair has never grown back but that’s ok. What’s there is very sparse & hardly visible but we’re used to it now.

We’ll be heading back to our Florida home for at least the month of October & plan to return to Ray’s doctor at the Moffitt Cancer Center for further evaluation. I imagine he’ll have lots of appointments there to check things out. During that month we will also be going on a week long Caribbean cruise to see our son get married on one of the islands! There are over 50 family & friends who will be part of that cruise & wedding festivities. So you see, we just have to get Ray better by then!

Nine Month Update

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

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

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

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

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

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

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

And so it goes...

Wrapping Up the Year

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...

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! ;-)

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.

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 1^st 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…

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:

• 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

Did I mention... the MDS (cancer) is GONE!!!!

just to name a few...

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.

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...

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.

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...