A Successful Dental Visit

We were a little nervous about having Ray's tooth extracted yesterday because of him being on Coumadin, thus the possibility of excessive bleeding, but it went well. I think that more than anything, it played on our nerves. By the time we returned home we were both done in. Ray slept most of the afternoon away & even I layed down for a couple of hours too.

So the holiday season is now upon us & we will enjoy the next week to it's fullest while Ray still feels okay. The weather here turned cool last night, dipping down into the 30's but we both thought it felt wonderful to snuggle under the blankets. With the wind blowing we could almost imagine that we were in Indiana & it was snowing! Not that we would really want to be in cold & snow, but it did make it seem more like the Christmas season we've always been used to. Our temperatures are expected to warm back up into the upper 70's in just a couple of days, so we'll not fret over a couple of nights of cold.

Next week we only have to go to the Moffitt Center once, just for a quick lab visit to check Ray's coumadin level. We'll not think about what follows the next week. At least not for now...

To all our family & friends, we wish you all a very Merry Christmas! 
Love, ~Ray & Pam~

Preparing for the Transplant

Things seem to be happening really fast now. The transplant doctor instructed Ray to get a complete dental exam to ensure he has a healthy mouth in readiness for the transplant. So he made the appointment since he was due for a regular check-up & cleaning anyhow. Because of his low immune system they had to give him antibiotics to preform the cleaning. No cavities but he has some sort of pocket in his gums between two teeth that he's had for years. The dentist was concerned that it could get infected & he reported as such to the Moffitt Center. To make a long story short, he is getting a tooth pulled tomorrow morning to ensure that when he has the transplant, there is no possibility of an unexpected infection causing serious problems. Because he's on coumadin, he'll remain longer than normal to make sure there's no serious bleeding.

The bad news is that the bone marrow biopsy did reveal that Ray has that nasty 17p chromosome & therefore the doctors feel it's important that he begin getting ready for a transplant because the 17p will cause the MDS to progress much quicker than if he didn't have it. And the past several months blood tests have indeed proven that to be the case. In ten days beginning on January 2nd. he will begin receiving chemo injections. Round 1 will consist of 7 straight days of injections followed by 3 weeks off.  They want him to receive at least four rounds of it which will take him up to May or June at which time they anticipate possibly doing the stem cell transplant if we can locate a donor match & all goes well.

We've been told that after beginning the chemo injections, at 1st we can anticipate his platelets to drop even more & at that point he'll probably need blood transfusions. But then they should rebound after a while. Also they prescribed anti-nausea meds for him to take as he undergoes the chemo because nausea is a very common side effect. That actually sounds like the worst part of it. Sadly we learned that when he begins the chemo, he must stop the coumadin & go full time on the shots we hate so much. But that's ok. We're learning to accept them as part of the "it is what it is" thing.

And so we plan to have the transplant here in Florida so we can be near the hospital which is vital. Dad & Randy will remain here until April, barring no unforeseen problems that would make it impossible for us to continue to be their caregivers over the next 3 months. We'll continue to make lots of trips on a weekly basis to the Moffitt Ctr but that's not so bad since it's only 10 to 15 min from us. They tell us Ray will probably start feeling tired but we hope they're wrong about that. After all, he's surprised them so far with his energy level remaining just fine! We do realize however that he must cut back on some activities (like playing tennis) because he can't risk any injuries.

This just all seems so surreal to us cause Ray feels perfectly fine right now. And even tho we are making lots of trips to the Moffitt Ctr for testing & consultations, & the shots & now getting that tooth pulled, etc. it hasn't really hit us yet. But something tells me that on January 2nd when he begins the chemo, it will...

Learning About Stem Cell Transplants

Ray & I spent most of today at the Moffitt Cancer Center consulting with several doctors, mostly about what we may be facing when we begin the transplant procedure. We still do not know yet if we need to pursue it sooner than later but the transplant specialists feel it’s wise to begin the search for a donor match NOW, even if we don’t do the transplant for another 2 or 3 years. Basically, if the last bone marrow results show that he has that nasty 17p chromosome, then they want to do the transplant as soon as possible because its presence will cause the MDS to progress much faster. If it’s no longer present, they may just continue to treat Ray with medication to try & hold his condition in check for as long as possible.  And of course, we must find a donor match.

One of the biggest decisions we must make is where to have the transplant. There are pros & cons either way we go. We realize that family support may be extremely important & we can best receive that back home in Indiana. However, we really feel that the Moffitt Center & their doctors are by far the better choice with their extensive knowledge in the transplant department. We learned that they average over 400 transplants per year. Another important factor is that we are only 15 minutes from their facility. In Indiana we are an hour away from the hospital that we’d need to use & from the sounds of it, there is going to be considerable travel involved, not to mention a lot of time spent in the hospital. He was told he should not mow grass anymore, nor work out in the yard because of his inability to fend off bacteria spores outside that could make him sick. If we remain here in Florida, that temptation wouldn’t be facing him. And I could probably keep him more in the isolation from people & things that they tell us will be needed. In Indiana the temptation to socialize, etc. would be very hard for him. If you know Ray at all, you know he’s the social butterfly in this family!

Either way we go, we know that we will no longer be able to be the caregivers for Dad (Ray Sr.) or Randy. At this point we cannot worry or concern ourselves with that because Ray must take top billing. Ray’s other siblings will be forced to take over that responsibility & I’m sure they will.

The doctor’s today did not sugar coat anything & what we learned about the transplant process did not paint a pretty picture. In fact, truthfully I found it very frightening. But it is what it is & we’ll face it head on & deal with it. Ray remains positive & is ready to getter-done! Me? Not so much. If they would tell us that we need to do it next month, I tend to want to put it off until the 1^st of April, thus allowing us at least a couple of months of enjoying some quality time together here in sunny Florida before we begin the process. Then Dad & Randy could remain here with us too, and just return home to Indiana in April as usual.  But who knows, we may or may not find a suitable match quickly anyhow. We just don’t know.

And so, here are some of the things we learned today;

Ø  A sibling donor is the absolute best option because by sharing the same parents, the chance of your body rejecting their stem cells is decreased. Each sibling has a 25% chance of being a match.

Ø  If there is no sibling match, the donor registry is an option, there is a 75% chance of a match but the chances of your body rejecting their cells is somewhat higher than if a sibling.

Ø  As I questioned the statistics I was told that the MDS re-occurs in 25% of transplant patients within the 1^st year. And that 55% get the MDS back between 1 & 5 years, but that means that 45% will remain cured!  Also that there is a 10% chance of death from surgery complications. 

Ø  The transplant process will require that Ray be hospitalized for a week of chemo just prior to the transplant followed by 3 weeks at a minimum afterwards, at which time he’d be in isolation. For 3 months following that, he would be required to visit the hospital twice a week.

Ø  He would be monitored very closely thereafter & would probably be on anti-rejection drugs for at least 2 years & would continue to have periodic bone marrow biopsies for the rest of his life.

Ø  Instead of a transplant, they can attempt to delay the need for a transplant by treating his MDS with medications for awhile, but even those only work for so long. If we’re lucky they’d work for 3 years, probably followed by another 3 years of chemo to try & control the leukemia that he would probably progress to. Another reason to possibly delay the transplant is to avoid the risk of death from the surgery itself! Yes, these are the words the doctor spoke. Like I said, they don’t sugar-coat it.

Ø  We were told that I would be the caregiver & to fully expect it to be a 24/7 responsibility. I can handle that & willing so. But I also can NOT get sick because if I do, they would insist I not be around Ray until I was over any illness I might have. We were told to expect many many days of Ray feeling pretty bad throughout the transplant procedures but that there would be a lot of hospital support for us, both physically & emotionally.

So what’s next? We meet next week (Dec. 20) to hopefully find out if that 17p chromosome showed up in the last biopsy & that will determine what we steps we take next. We have a LOT of decisions to make. If only we could see into the future so we’d know the best route to take. On a positive side, we’ve recently heard of many success stories of folks that have went through these transplants & are living proof that it can be worth the risk. Sometimes you just gotta take the risk…

Emotions and Attitude

Sharing thoughts and feelings. While talking with one of my sisters about my starting this blog, she questioned whether or not the blog was a good idea or not. She questioned whether or not a blog would be too emotional for me, adding that she didn't think she could do that if it was her. If you know me at all, you know that I'm not afraid to share what's going on in my life, including the emotional side. I may not share my deepest fears & feelings, but for the most part I will share most of it. I'm pretty much an open book, which at times drives my kids crazy. I have never been a private person. What you see is what you get.  

In my opinion a blog serves many purposes but above all it allows family & friends (that want to know) to be kept in the know on what's going on by them always having access to the online blog. Thus I'm not having to continually repeat it all over & over again to everyone that asks. Plus everyone then hears the same information 1st hand, thus eliminating false rumors. This blog is NOT meant to seek sympathy. It is meant to provide awareness & understanding. Plus it allows me to compose my thoughts in a concise factual manner as I share any information.

Many inquire on how Ray & I are handling things emotionally. I will attempt to express some of those feelings here. Although I must say that our emotions can vary from day to day depending on the most recent medical news we receive, & even the mood we may be in at any given time. But isn't that true for everyone?

Last week while sitting in the hospital waiting on Ray's biopsy to be completed, I was reading a most interesting & unusual book that really got me to thinking. It's title was "The Five Things We Cannot Change... and the Happiness We Find by Embracing Them." According to the author, those 5 things are:

1. EVERYTHING changes & ends (and are inevitable, including life itself, relationships, happiness, sadness, our interests, etc.)
2. Things do not always go according to plan  
3. Life is not always fair
4. Pain is part of life
5. People are not loving & loyal all the time   

The author goes on to explain it all in depth & point out that it's how we handle those things that makes all the difference. Basically what I got out of reading the book is that if we can learn to ACCEPT the things that we cannot change for what they are & understand it's how it is, we will be better off & avoid the negative emotional toil it puts on us. The 'acceptance' part is what I am trying very hard to implement in my life these days. In other words, play the cards I am dealt the best I can & realize "it is what it is" & move on.

I have a very good friend that told me recently to not worry about what "might" happen. (Thank you Marita!) Ray & I are trying to do just that. Right now we really don't know what's down the road for us, nor what the final outcome will be. We are remaining positive & upbeat & carrying on with our daily lives normally. We are not down in our spirits, nor dwelling on negative things. Yes, we talk about it & know things may go downhill sooner or later, but we'll handle it if & when that happens. That's not to say that we don't have moments of anxiety & worry at times. Who wouldn't in our shoes? But for the most part, I think we are doing a pretty good job of 'accepting' things for what they are & moving forward.

There you have it in a nutshell. Don't worry about us, nor feel sorry for us. Things are what they are & we'll take each day as it comes & handle it. We can all look around & see others much worse off than we are in life. We can rejoice in every day that we wake up & feel okay. And if we wake some morning & don't feel so good, we'll try to accept that too & handle it as best we can. Right now Ray is feeling perfectly fine & we are truly enjoying life.  Yes, remaining positve may not be easy at times, but we're going to do our best! For now it's relatively easy because Ray isn't really in any physical distress; well except for those dang shots I'm giving him in his stomach, but that's minor & only lasts about 5 seconds per day. ;-)
 
Since publishing this blog, I have already heard from so many via email with kind caring words. That is indeed appreciated & I thank you all for that. It's heartwarming to know that so many care. 

I probably won't have anything more to blog about until our next hospital appointment on Dec. 11th.  

Remaining in Limbo

We met with Ray's doctor today at the Moffitt Cancer Center. Although we didn't receive the news we were expecting, we are somewhat relieved. All the biopsy results are not complete yet but the preliminary report is showing a few unexpected, but good things! However it left us scratching our heads. Apparently the tests are showing different results than the last biopsy done last month in Cincinnati. The 'blast' numbers that somewhat gauge what stage you're in are now at just 1%. That's what they were in June when he had his 1st biopsy. But the 2nd biopsy in late October showed that they had gone up to 6%. Also, the October biopsy had identified that nasty 17p chromosome problem, but the doctor is not seeing that showing up now. What the heck!

So you know me, I begin to question it all to make sure I understand what he's saying. Could the results in Cincinnati have been reported incorrectly? Can that nasty chromosome 17p problem just disappear? Could those 'blast' numbers have been read wrong? The doctor said that is one reason he always preforms his own biopsy before making any decisions on treatments. He told us that the pathologist reading/viewing the tests may have not interpreted them accurately & that the pathologist at his center here at the Moffitt Ctr is an expert & he has complete trust in his interpretations. On the other hand, maybe the Revlimid med they had him on was finally doing it's job. He said that normally the Revlimid would show positive results sooner but Ray doesn't exactly seem to be in the 'normal' category with how his body is reacting to it all.

How the Revlimid works is very interesting. It was explained to us like this. Think of the Revlimid as a weed killer (the bad stem cells are the weeds). The weed killer kills the weeds & THEN the grass (good cells/blood) needs time to re-bound. Our hope is that Ray's blood work begins to improve but only time will tell.

This does not change the fact that he does indeed have MDS, but it greatly impacts what we do next. The continued blood work that Ray continues to receive almost weekly still shows his deficiencies in many areas. The doctor wants us to still keep our appointment with the stem cell transplant people so that should Ray need to move forward with the transplant, we'll be ready to go, telling us that depending on what the final biopsy results show, he may need to have the transplant as soon as possible OR we may be able to just treat with medicines & put it off another 2 or 3 years. Say what?

So again I ask the doctor questions. Are you saying that at some point he definitely will need the transplant & if so, what determines when? The answer is yes. If the final results show that the 17p chromosome is no longer a problem & has corrected itself and the blasts are at just 1%, then we will probably just treat with a medicine regiment & continue to monitor him. But if & when blood work results show things going south, the transplant would be in order. Therefore we are still in limbo for the time being.

I asked about the possibility of using his own stem cells, as is sometimes done & was told that is not an option with MDS. You must have a donor that matches. Your best chance of a match is your siblings of course. If no match, then there is a donor registry. But we'll cross that bridge when we come to it.

One thing we were not happy to learn is that he must start again with the shots in his stomach each day until we can meet with the doctor that handles the decisions on his coumadin meds. I tried to talk the doctor into just letting him start back on the coumadin to prevent blood clots & forgetting about those darn shots, but he said "No". I don't know who hates those shots the most; me who has to administer them to him, or him receiving them. Poor guy. Sometimes when I give him the shots, he barely feels them. Other times they hurt & leave nasty bruises.

We meet again with the doctor in two weeks. Hopefully we will know then what course we'll be taking. In the meantime, we have various appointments for continued lab work to monitor his blood, coag consultation, transplant consult, etc.

Ray wore a face mask while out today for the 1st time. Was kind of odd. We have told Randy (his 56 yr old brother who has downs syndrome & also lives with us) that we all must now be extremely careful about avoiding germs, & that every single time he returns home from going anywhere, even just for a walk, he must go straight to the bathroom & wash his hands thoroughly NO MATTER WHAT. Randy wasn't happy about that & did a bit of grumbling but it's ok. He'll get used to it & do fine. This household will all be taking daily multi vitamins. The national news tonight reported that the flu season may be worse than usual this year. I sure hope they're wrong! But all four of us had our flu shots before we left home.

On a positive note, Ray is still feeling fine & continues to do whatever he wants. Tomorrow he's heading out to play some tennis. I am so glad we both took that early retirement when we could. I said it then, that we weren't going to look at how much money we gave up by taking early outs because we wanted to enjoy some retirement while we were still healthy. Ray's been retired & enjoying it fully for going on 9 years now. I've been retired going on 7 years. And we've never looked back. Just saying... 

Feel free to leave comments by clicking on the little "Comment" tab directly under this post, but be sure to sign it so we know who wrote it! ~Ray & Pam~

Receiving the Diagnosis

If you're visiting this blog page then you already know that Ray was diagnosed with Myelodysplastic Syndrome (MDS). This blog is to journal the trip that we now find ourselves on in dealing with this little known disease. We had never heard of it but now we are consumed with finding out all we can about it. In an effort to keep it all straight in our own heads AND to allow folks that want to know more about what's happening with the treatment plan & how we're handling it all, this blog is for that purpose. I shall attempt to keep it as up to date as I can as we progress through the medical & emotional aspects of it all.

 What is Myelodysplastic Syndrome (MDS)? The following link will explain it better than I can:   Click here to learn what MDS is Basically it is a blood disease that affects the bone marrow and blood. Some types of MDS are mild and easily managed, while other types are severe and life-threatening. Mild MDS can grow more severe over time. It can also develop into a fast-growing, severe leukemia called acute myelogenous leukemia.

  How did we discover that Ray has MDS? Well, about seven years ago during a routine annual exam, the doctor said his blood work showed that he was anemic & sent him to a specialist to get checked out further. That doctor suggested that he have a bone marrow biopsy then but Ray refused. So every year after that, his annual blood work continued to show the same thing, but we didn't worry. He felt fine. However, this past Spring his blood work showed a drastic change from the previous year & his doctor scared him into finally getting the bone marrow biopsy, pointing out that he could have cancer! He relented & scheduled the biopsy.

 On June 25th, 2012 we were told that he has MDS & he was started on a drug called Revlimid that supposedly been proven to help in some cases. It is mostly prescribed for patients that also have the chromosome 5q deletion, which Ray has. He felt like he was signing his life away with all the paperwork he had to sign to get the drug. And the possible side effects they tell you about it are quite scary. You cannot just go to the local drugstore & pick it up. It is sent directly from the pharmaceutical company. Fortunately our insurance covered most of it. The cost for 30 pills runs between $5,000 & $8,000.

 Wouldn't you know, after being on the drug for just a month, it landed him in the hospital with multiple blood clots to his leg & lungs! He also was experiencing constant diarrhea & bad muscle cramping. However his doctor felt that he needed to remain on the drug & give it a chance to do some good, so he prescribed coumadin to hopefully counteract the clots. The other side effects continued but Ray handled them pretty good. He didn't let it slow him down one bit!

 In late October 2012 he had a second bone marrow biopsy that revealed that his blood was steadily getting worse & the Revlimid drug was stopped. We headed south for the winter with the name of a specialist at the Moffitt Cancer Center in Tampa that would be taking over his case.

 On November 21, 2012 Ray had his 1st visit with Dr. Rami Komrokji at the Moffitt Center. We were both very impressed with the doctor and the facility. We were told that along with the chromosome 5q deletion problem that we already knew about, that he also has a 17P & p53 chromosome problem & that the 17P is a really bad one to have with the MDS. In fact, according to the doctor it's fairly rare with approximately only 2% of his MDS patients having it. Just great! NOT!

 Last week on November 30, 2012 Ray had his 3rd bone marrow biopsy so that the doctor can evaluate any changes in his tests over the last month before discussing the treatment plan. We meet with him tomorrow to discuss how we're going to attack this disease. We meet with the bone marrow transplant specialists next week to discuss that option. The ONLY cure for MDS is the transplant process but it is very extensive & very scary to contemplate. The risks are high. The following link will explain the process: Click here to learn the transplant process

The really strange thing about all this is that Ray feels perfectly fine! His energy level is okay & he continues to do whatever his wants. If it wasn't for the blood work & bone marrow biopsy results, we would have no idea that anything was wrong. That is really baffling the doctor's who are amazed that he isn't showing any visible outward symptoms. Right now our biggest concern is that his immune system is near zero! He's been told that it might be a good idea to start wearing a face mask whenever he goes out in public to protect himself. We are trying to be so very careful, washing our hands constantly & I now have bottles of hand sanitizer at the house, in the car, in my purse, etc. We've been told that if he begins to come down with any sickness & his fever is 100 or more, to call the doctor immediately.

 So there you have it. This is where we stand right now. Feel free to bookmark this blog's website & refer back to it as I document the journey.