Another Full Day at Hospital

Good golly; thought tomorrow would be a fairly quiet day spent at home when a single phone call came through that changed all that. Apparently they need Ray to be at the hospital early in the morning to have his line flushed, labs done, another bone marrow biopsy, & a CT scan. Expect we'll be there the entire live long day...

Transplant is Back ON

Ray passed the heart Echo Stress test with flying colors today so now it's all up to whether or not the original donor can do it THIS Sunday! The hospital is right now in the process of working with the donor coordinator to contact the donor & find out.

I'll update this post just as soon as we hear from the hospital.

Wednesday update: First Sunday in May! Seems strange to start the process on a Sunday but that's what they do. Let's hope nothing happens to delay it any longer because we are ready to get on with it & get past it.   

Transplant Delayed!

Oh NO! Just as I finished updating this blog to report that Ray's transplant is in 2 days, we received a phone call from his doctor saying that they have given his slight problem with one of his heart valves not functioning to full capacity, a second review. The team of doctors would feel more comfortable with doing some additional tests to make absolutely sure there won't be any issues with his heart because of the transplant. They decided to postpone the transplant for at least a week & are shooting for NEXT Sunday now (April 28th). So Monday they plan on doing an Echo-cardiogram stress test & maybe some other tests.

I found this upsetting to a degree because just today Ray had his "Central Venous Catheter" inserted into his chest. Very strange to think that this contraption will remain there for a few months. It's approximately 10 inches in length & dangles down his chest. They tell us it's a very good thing because all of his chemo, transfusions, blood draws for labs, etc. will be done through it, instead of all the needles continuously poking him.

But dang, had they decided sooner to postpone the date, he wouldn't have had to have this inserted just yet. Now he'll be dealing with it hanging on his chest longer than he would have.

My other concern now is that Ray's donor may not be available the following week! After all, the donor must make arrangements for time out from his life to do this & then to have the dates changed could create a problem. They tell us they have another donor match if the initial one doesn't work out now because of the date changes. But how realistic is it to expect a possible donor to be willing, ready & available with just a few days notice!?

Oh my, the new concerns running through my head now. What if they find something with Ray's heart & decide that he's not a candidate for a transplant? Do we then pack up & return back home to Indiana? Do we pursue other avenues of treatment? I'm trying to tell myself to STOP worrying about what 'might' or 'might not' happen & just deal with each day as it comes. One day at a time.


Anyhow, for some good news; We recently had visits from both our children (Ray III & Charla) plus ALL 5 of our grandchildren. It was a wonderful time & very special. They felt it important to come see their daddy & grandpa before his hospitalization while he still feels good.

 

We want to thank everyone for all their words of encouragement we've been receiving. 


And so our story continues. Stay tuned right here for more as it happens. As ever, ~Pam~

Going Through the Motions

Yes, we are going through the motions taking each day as it comes. This place Ray & I find ourselves in now still seems so unreal. So many folks comment on how looking at & spending time with Ray, they'd never know anything was even wrong with him. And it's true. He looks great & feels fine. Truly, if it wasn't for the repeated blood work & bone marrow biopsy's, we'd never know he has MDS (Myelodysplastic Syndrome).

One may ask & some have; why would Ray choose to even have the stem cell transplant & put himself through it. After all, as I said he looks & feels fine, so why ask for something that you know will cause you to feel tremendously ill  plus potentially put you at risk of many other things happening as a result of the transplant?  Basically the only cure for MDS is to have a stem-cell transplant.  When Ray asked his doctor what would happen if he chose not to have the transplant, he basically said that it would eventually develop into full blown leukemia & he would "die" much sooner! The choice to have the transplant was totally Rays. He knew that I would support him no matter what choice he made. But it was a choice that I could not & would not make for him. Some of you that know me really well, may find that funny. Enough said!

Me being the inquisitive one & always thirsting for knowledge & understanding of what we're facing, I have already read so much on the subject. I feel that we must be prepared for what may lie ahead. Sometimes I think that maybe that's not really the best thing because it scares me deeply. Reading so much about others who have gone through this journey, I've learned of many success stories with happy endings. I have also read some stories of not so good results. But gosh, isn't that true of most things. Ray is going to be one of the SUCCESS stories!

I realize that, yes, I definitely have control issues but don't we all to an extent?  We, as  human beings, need to have control of some things in our lives... and realistically, the only thing we can control is ourselves. And right now that's just what I'm trying to do in a positive way by trying to hold onto only positive thoughts. But I gotta tell you, it ain't always easy.

"One Day at a Time"
That song floats through my thoughts a lot these days. And really that's all a person can do. I know that I must try to always channel my thoughts to the positive things & actually Ray helps me do that because he is always positive! He never shows that he's scared & hopefully he's not. I'm scared enough for the both of us, but again I ask you, who wouldn't be?

I'm only human, I'm just a woman.
Help me believe in what I could be
And all that I am.
Show me the stairway, I have to climb.
Lord for my sake, teach me to take
One day at a time. 
That's all I'm asking from you.
Just give me the strength
To do everyday what I have to do.
Yesterday's gone sweet Jesus
And tomorrow may never be mine.
Lord help me today, show me the way
One day at a time... 

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What We Learned in Transplant Class

We checked one more thing off our list today by attending the required Transplant Class that's meant to somewhat prepare us for what to expect. Most of it we already knew from previous meetings with numerous doctors, social workers, psychologist, nurses, etc. but it did give us more opportunity to ask questions.

Many things we were told left me shaking my head in amazement. Basically the goal of transplanting donor stem cells into one's body is to replace all of the patients problematic stem cells that are causing all the problems with good ones from the donor. So they kill all of Ray's stem cells with powerful chemo & then inject the healthy donor's stem cells. If everything goes well, those stem cells will go to work spreading through Ray's blood & multiplying into good fighting healthy cells. This is called "engraftment". But unfortunately there is a danger of this process not working the way it's meant to.

One's immune system normally keeps us healthy by destroying anything in the body it sees as foreign, such as bacteria or viruses. A working immune system recognizes cells from other people as foreign, too.If the tissue type match between donor and recipient is not close, the patient’s immune system may see the new stem cells as foreign and destroy them. This is called graft rejection, and it can lead to graft failure. This is rare, because the pre-transplant treatment (chemo and/or radiation) mostly destroys the recipient’s immune system, and donor matching is carefully done. 

Another problem that can happen is that when the donor stem cells make their own immune cells, the new cells may see the patient’s cells as foreign and turn against their new home. This type of attack is called graft-versus-host disease (GVHD) and can cause a multitude of problems. Most transplant patients experience at least some of these problems but to what extent varies from patient to patient.

Because of the non-existent immune system that results from the chemo plus the possibility that the new donor stem cells could try to attack Ray's body, the precautions we must take to avoid germs & disease seem extreme but necessary. As you know, Ray's immune system is already greatly compromised & we've been trying to be extra careful in many aspects. But after the class today we realize that we probably haven't been careful enough.

Sure, we wash our hands constantly & use sanitizing gels when out. Ray often wears his mask when he feels it's needed. We refrain from eating out at certain places & avoid eating from common/shared snack bowls, etc. He doesn't drink soda from fountain dispensers or use condiments from fast food places. If we know someone is showing signs of illness, we stay away from them. Ray uses paper towels to dry his hands so he's not sharing towels. So yes, we take precautions now. 

Anyhow, today we were given handouts listing many Do's & Don'ts that we never considered & forced us to look at things differently. Yes, we can eat out but with many precautions; things we never would have worried about before. No KFC chicken cause one can't know how long it's been under the warmer. No water or ice in restaurants unless it's bottled. Nothing that has garnishes on it, like a leaf of lettuce or parsley, etc. Of course NEVER eat food in a restaurant prepared by someone that wasn't wearing gloves. Truthfully, how would you know if it was or wasn't? Never eat raw fruits or salad items in a restaurant either. So after class we stop at Bob Evans for lunch & the potatoes were sprinkled with bits of parsley & the little cranberry relish was sitting on a leaf of lettuce! In class they told us that once a food item even touches the garnish, it's contaminated & shouldn't be eaten. Oh my. So much for eating out!

And then there are personal hygiene things in the home. I learned that I do something that is definitely a No-No & I would never have thought of it. After washing dishes the dish cloth must be washed each time! What! I can't use the dish cloth to wash my dishes for at least a couple of days? They said absolutely not. Never hang it over the drainer or faucet to dry & use it for another sink of dirty dishes. So many other things to be careful of too.

We learned lots of side effects that may or may not happen following the transplant. They spoke about typical daily routines in the hospital & it sounds like Ray isn't going to get much un-disturbed sleep because at least every four hours around the clock they'll be doing things with him. They have a pull-out bed for me if I choose to stay with him all night but it sounds like that will be up to us to decide if it's necessary. I've promised Ray that as long as he feels he wants and/or needs me there, I will remain. I'm sure I'll come home occasionally to fetch things & to get rest if I find I can't get any there. We live only 11 miles from the hospital so if I'd go home, I could quickly return if needed.

There was a LOT more covered today in class. So much information that my head is swimming. But we are handling it & doing the only thing one can do; take it one day at a time & cross whatever bridges we come to...

Taking More Notes

Goodness gracious, it's a good thing I write everything down because I'd never be able to remember all the information being thrown at us! Today was another one of those really long days at the hospital, although I'm sure it's nothing compared to what's ahead. 

Today we met with two of his doctors to review & discuss Ray's current status & what lies ahead. Plus he had to sign many consent forms. We met with the pharmacist to go over all his meds that he's currently on plus the many other meds that he will soon be placed on & the reason for them. Most important is the anti-rejection drugs that he'll need to take for a couple of years.  We also met with the Clinical Trials Coordinator of the Bone Marrow Transplant Research department who explained a clinical trial they are currently working on. Of course they would like Ray to voluntarily be part of that trial regarding a drug that has shown some very positive results with preventing rejection in various organ transplants. The clinical trial would test the drug's ability to also have similar positive results with bone marrow transplants.

It's now just two weeks until the transplant. As we sit in the Bone Marrow Transplant waiting room, we overhear many stories & see folks that have already gone through a transplant. So far most of the stories are positive & give us hope. We hear the talk of the hard parts but they all usually end with words like "It DOES get better over time".

We did learn that the 30 days of hospital isolation is not confining Ray to his room. He will be permitted & encouraged to take daily walks in the halls, but he can not leave that area of the hospital. That whole unit that he will be hospitalized within is kept separate from other parts of the hospital & is strictly monitored. The unit has special air filters & other special measures to keep it more sanitized. He will be allowed visitors but they must not have any signs of illness & will be required to follow strict instructions when around him. Flowers & plants are not permitted in the room.

They tell us that if Ray does really well & his blood counts rebound quickly, there is a possibility that he could be released sooner than the thirty days. That makes me a little nervous thinking he wouldn't have that 24/7 'professional' nursing care where they monitor so many things.  But if he becomes depressed & antsy, then home might be better in the long run.

We were told that although the previous three rounds of chemo did not cause him much distress because he didn't really experience the usual side effects of it, this next dose is much more powerful & that he will most certainly experience many bad side effects. (Hair loss, nausea, mouth sores, extreme fatigue, etc.) Normally those issues don't start showing up until about a week after receiving the chemo. He'll probably feel really bad for approximately 2 to 3 weeks before the new stem cells start taking over & doing their job. Then he should start feeling better. Better but not good yet. That will take quite a bit more time. 

He will be admitted & started on the chemo April 21st. The chemo will be administered for four days. On the fifth day he gets to rest & then on the sixth day (April 26th) he will receive the donor's stem cells. So April 26th (Day zero) is when his new birthday is. And it's springtime - a time of re-birth...

Holding Our Breath

The countdown is on now as we are fast approaching T-Day (Transplant Day).  The doctor's are crossing their T's & dotting the I's as they go through their list of checks to ensure that Ray is healthy enough to withstand what they are about to put him through. Today we met with the Infectious Disease physician who gives the final okay on whether or not he's ready. It was an interesting meeting & we learned several interesting things.

Most things checked out ok (kidney, lungs, EKG tests, nutritional status, etc,) But the lung tests showed many nodules present & we were told that he has "Nodual Pneumonia". Never heard of that. The mega blood they took last week was analyzed & showed that he had experienced various things throughout his life that he was unaware of. Was amazing to us what it could show. For instance, apparently at some point in his life he had mononucleosis although he was totally unaware of it. The doctor said that's possible if it was never diagnosed at the time. They could also tell he had chicken pox at one time. And they asked if he'd ever been around many animals because they detected something in his blood that is currently dormant relating to something that is picked up from animals. Goodness yes - he was a dairy farmer for many years & as a child also around turkeys, chickens, pigs, etc. on the farm. It detected several things that are dormant right now but because of his lack of immunity, they could resurface & be a problem. Therefore today he was started on three different anti-biotics as more of a preventative measure.  One to fight off bacteria infections, one for virus infections & one for anti-fungus infections.

The Echo-cardiogram did show that his left heart valve is not functioning as well as it could be but because it's just slightly less than what they'd like to see, they aren't too concerned over it. I asked if the lung thing doesn't get any better, will that delay or hinder the transplant date. The answer was "No". As long as he continues to remain relatively healthy, it's still a go. Because we are in the home stretch now, they want to take every precaution, thus the antibiotics & close monitoring.

It was interesting to learn that after the transplant & his blood counts rebound, down the road he will need to be re-vaccinated all over again, just like a newborn baby. They consider the day of stem cell transplant as a re-birth. Guess Ray will be celebrating two birthdays from here on out!

And so tomorrow we meet with two more doctors to discuss what lies ahead & learn more things we need to be doing now. Next week we must attend a class to learn even more. Makes me wonder just how much more is expected of us. I'm probably already doing a lot of what they'll mention. At least I hope so! I've already done quite a bit in getting our home ready. Washed walls & blinds, laundered all the drapes & curtains, washed all the bedding, etc. Just need to shampoo the carpets yet & wash down a few more walls. Just a couple more days & I should have it all under control & completed.

And I've hopefully purchased enough clothing for his use in the hospital. We were told that he will be expected to get dressed each day & take walks so they recommended certain types of clothing that he didn't have on hand here. Enough to change into clean clothes each day. And of course he needed some nice PJ's so he doesn't have to wear yucky hospital gowns.

Between all this, I am trying to fit in a few check-up type appointments for myself while I can. (Dentist, dermatologist, etc.) So even on the days we don't have to go to the hospital (which are rare) we have other places we need to go & things to do. Hoping next week will be more relaxing. Plus we are looking forward to a visit from our daughter & 3 more grandchildren!

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