One Full Week After Transplant

Our past two weeks spent here at the hospital have not been nearly as bad as I had imagined they might be. It's certainly not been a picnic but so far Ray is progressing along without any serious issues. There haven't been any signs that his body is rejecting the donors stem cells.  Having said that however, he is beginning to experience side effects from the intense chemo he received, as well as the additional anti-rejection meds & powerful antibiotics they've been giving him as a preventative measure. Among the side-effects Ray is now dealing with they include:

• Rashes that now cover his arms & seem to be spreading. So far those aren't itching yet but they're beginning to be uncomfortable for him. (Treating it with cortisone creams)
• Very flushed skin (looks sunburned)
• Bloating stomach & cramps that comes & goes
• Mouth sores that are beginning to become more bothersome
• Sore throat just starting
• Loss of appetite (the bloating & cramps don't help the matter)
• Developed an intestinal infection
• Fatigue that fluctuates in intensity 
• Occasional headaches
• Trouble sleeping without the aid of a sleeping pill

These side effects are very common & for the most part expected by the staff. As soon as they begin to appear the doctors immediately take measures to ease the symptoms while the conditions run their course. Yes, Ray is having all the above side effects but it's not as bad as it sounds right now. He is not in any unbearable pain or discomfort. We see & hear others in this unit that are going through transplants too that are having some real distressing problems. It makes us realize how lucky Ray is that he's doing as well as he is.

Unfortunately the intestinal infection Ray developed can be contagious & therefore extra precautions are now in place. Any staff entering Ray's room must now don a protective gown & gloves. An isolation sign has been placed on his door. The strange thing to me though is that they still allow him to take his walks out in the hall. They stress that he continue this walking regiment but now require him to put on a hospital gown over his clothing when he does. He is still walking two miles a day. 

Depending on when you speak to Ray, sometimes he feels pretty good & sounds pretty chipper. But then there are other times when you might catch him during a down phase & then he may sound very weak. It seems he's up & down. Unfortunately they tell us that he will probably feel worse & begin to lose his appetite even more than he already has before he begins feeling better again.

Yesterday my friend & backup caregiver for Ray (Donna Holbrock) and I attended the "Caregiver Class" to get educated on the various things we need to know in preparation for when Ray is released from the hospital. There are so many precautions we must take for Ray's safety & well being for the next couple of months. Mostly keeping things as germ free as possible. I'm so thankful to have Donna as my backup if ever I should get sick myself & need to remove myself from Ray's presence until I get well. Donna is a friend & neighbor in the park where we reside here in Florida. And she actually has been volunteering two days a week at the hospital here for quite some time so she is familiar with what we are facing.

But as I said earlier, things aren't nearly as bad as I thought they might be. Praying it stays that way! The hospital room is very nice & spacious. The staff goes out of their way to make us both comfortable. And believe it or not, I'm actually getting some relaxation in! Yes, I attend to whatever Ray needs help with to make it easier on him but I'm also getting LOTS of time to read the novels I brought with me & of course spend time staying in touch with folks via my laptop. AND I don't have to shop for groceries, cook or clean! Delicious meals are delivered to us & the room is cleaned & sanitized daily. We both are always being offered food & drink.

So things aren't so bad. In fact one day while Ray was having a fairly good day, I was able to slip home to do some laundry & I took a little "Me" time & went for a nice swim in the pool before returning to the hospital. Only downside to that was that I missed the prime rib they served Ray for lunch that he couldn't eat because of his lack of appetite! Had I been here I certainly would have eaten it! I'm praying Ray's side effects don't get much worse but if they do, we'll handle it!

3 Days & Counting

Thought it time to provide another status update with how Ray is progressing since his bone marrow/stem cell transplant four days ago.  I post frequently on my Facebook wall but since there are many following this blog that don’t do Facebook, some of this will be duplicate information that I’ve already posted on Facebook.

As you know, Ray's transplant was this past Saturday. He now is considered to have a new birthday beginning with the day of his transplant which is considered Day 0 - The first 100 days are the 1st milestones we must conquer. They tell us that usually if they can successfully make it to that point, his life should begin to turn around & return to a more normal lifestyle (like being able to eat out & be around more people, etc.) Of course it probably won’t ever entirely be as it was & we’ll develop a ‘new normal’ lifestyle. Interestingly he will actually have to be re-vaccinated all over again just like a new baby. So today he is now 3 days old!

Starting a new week & all is well with us. Ray feels 'relatively' good considering all he's going through right now. I'm totally ok as well & handling things on my end with no problem. I'm now spending EVERY night with him in the hospital & will remain by his side to help with whatever. There are some side effects that have begun to show their ugly face but all in all, Ray is doing really good. His appetite is very poor now so he’s beginning to drop a few pounds. The chemo often causes mouth & esophagus sores that we were hoping he would avoid but that too is starting to appear. Of course tiredness is constant now but he’s still walking two miles a day. Sleep at night seems to elude him a lot but we’re working on finding just the right sleeping aid to help him with that.

Yes there are issues but it's all expected & we're dealing with it. His white blood cell count is now steadily dropping & will until it bottoms out. It usually takes a couple of weeks before the new donor cells really kick in & start him on the upward recovery train. In the meantime we must deal with a few unpleasant side effects of the various drugs. Then don't you know that the drugs used to combat those side effects often cause other side effects & then you deal with those! But it is what it is.

We couldn't have asked for a better place if one has to be in the hospital! Ray had a wonderful visit by a harpist today who delighted us both with some beautiful soothing music, compliments of the Moffitt Hospital here. And if he'd like a massage, they offer that too. All he has to do is ask!  They are always offering goodies to encourage Ray to eat & today they brought him a strawberry milk shake that he said was yummy. They offered me one too! I have to say that I'm pretty impressed with the food here. The variety is good. They all go out of their way to make this experience as pleasant as possible by catering to our every need. And right now he's stretched out in the recliner listening to him some Merle Haggard. (I brought in my boom box & CD's)

Ray listening to harpist on the right at foot of his bed.

So things are progressing as expected & Ray really is doing exceptionally well despite the various things he’s dealing with. We’re riding this train to wherever it takes us. Thank you all for the wonderful caring messages. We read them all on our Facebook walls & the various emails.

Transplant Accomplished!

It is done. But it certainly was a very long night for us. Apparently the donor must have decided to have the stem cells harvested from his bone marrow instead of from his peripheral blood. At least that’s what we are guessing was the reason. Originally we were told that he would be receiving the five days of injections to stimulate his stem cells before they were harvested but it turns out that they took the cells from his bone marrow instead, thus he did not have to go through the days of injections. Although extracting the cells via the bone marrow route is more invasive, it is much quicker & requires an hour or so outpatient appointment to accomplish it so I can see why one would choose that route. 

When we questioned what the difference between a “Bone Marrow” vs “Stem Cell” transplant was, we received this explanation; As it turns out, the only real distinction is in the method of collecting the stem cells. When stem cells are collected from bone marrow and transplanted into a patient, the procedure is known as a Bone Marrow transplant. If the transplanted stem cells came from the bloodstream, the procedure is called a peripheral blood Stem Cell transplant—sometimes shortened to “stem cell transplant.” So whether you hear someone talking about a “stem cell transplant” or a “bone marrow transplant,” they are still referring to stem cell transplantation. The only difference is where in the body the transplanted stem cells came from. The transplants themselves are the same.

So to get on with how the actual transplant went last night. The donors stem cells did not arrive until evening & then they had to prepare them for transfusion into Ray’s blood stream. At 10 PM they hooked him up & began the transfusion. It was a very large bag of blood/cells & we were told that because it came from the donor’s marrow, it tends to be thicker & must be set at a slower drip. The nurses were in continuously throughout the night monitoring Ray’s vitals. At first every 15 minutes & then once an hour. Ray thought he needed a sleeping pill so that he could sleep, but personally I think he would have dosed without one because he was already so tired. But nevertheless, they gave him a sleeping pill.

There really was no sleep to be had for either of us during this time. Ray had to continually use the bathroom which was somewhat of a challenge because he was tethered so closely to the IV pole & couple that with being so groggy (remember he took that sleeping pill), it kept me on my toes assisting him so there were no mishaps. I would lay down but could never really sleep because I needed to stay alert to any needs & assistance he needed.

After six long hours, the transfusion finally completed around 4 AM. Ray did great! No problems at all. His vitals remained good all night. He became a little flushed & still is more so than usual. But really, for the past month we have noticed his face always seemed to be really flushed, as if he had sunburn. This morning his stomach is grumbling a little & he has a slight headache. They can give him some meds to hopefully combat those issues. His appetite has gone south too but he did eat a small breakfast. The doctor commented this morning on his gaining 8 lbs since checking in 7 days ago because usually folks lose weight. But while he was feeling okay these past few days, he ate really well. I can see that turning around now though so I suspect the gained weight will be shed soon.

The doctor also encouraged Ray to continue his daily walking as much as he can tolerate so after he got his morning shower we walked the halls for awhile. Granted it was a much slower pace than before, but he did well. I imagine that the remainder of today & tonight will be spent trying to catch up on some much needed sleep. He is totally exhausted right now & beginning to feel really puny. However, his feeling ill was totally expected & unfortunately par for the course.

Now is when the critical time-frame begins as we watch how his body reacts to the donors stem cells. He is on anti-rejection drugs to help prevent his body from rejecting the new cells. Unfortunately some of the meds they must give Ray often cause some unpleasant side effects like mouth sores, rashes, etc. but they will deal with those issues if they happen. The good news is that the 18 year old male donor was a 10 for 10 match to Ray AND they have the same blood type which also lessens some negative outcomes.  We know that it’s vital that Ray not be exposed to any germs now because he it totally unable to fight them off. We know that he will become increasingly more tired for awhile. At least until the stem cells start doing their job. In approximately 2 to 3 weeks, if all goes well, he should feel a turnaround & began feeling better.  We’re praying for that day…

No Complaints So Far...

It's kind of strange to have so much free time on our hands, but nice.  This post is just to give folks an idea of what we're experiencing right now on a daily basis & to give an idea of the hospital environment.

Ray's 1st night of receiving chemo (Sunday) went well. He dosed on & off between the all night visits by the nurse. I'm sure that he didn't get much sleep but the next day he said he felt just fine & didn't even take a nap. He has his laptop & is playing a lot of "Spider" card solitaire to pass the time. Plus he's been watching his beloved Cincinnati Red's baseball games.

Me on the other hand hardly got any rest that first night. The pullout sleeper is a nice size but it's hard as a rock. Plus being in this new environment will take a little getting use to. I decided when I got up the next morning to go home & get the thick foam waffle pad from one our spare beds, along with my nice king size body pillow. Gosh did I get lots of looks carrying that large bedroll in here. While at home, I was able to sneak in a much needed short nap before heading back to the hospital. 

We've had lots of people popping in throughout the day, each with their own bits of information & instructions. The case worker to explain how she'll help us with any insurance issues we may have, the social worker to offer any aid she can with dealing with numerous things, the physical therapist who visits each day to run Ray through a half hour workout, & the Chaplin to offer his spiritual comforting, to name a few. Each & every morning a whole group of doctors, nurses, aides, etc. appear together for a brief check on Ray. Usually 6 to 8 of them lining up around us in the room. And all throughout the day his assigned nurse & tech are in here checking on things & seeing to this, that & the other.

Today they strapped a new apparatus on Ray that he'll wear over his shoulder for the whole time he's here. It contains the anti-rejection meds that will continually pump into his body to hopefully prevent his body from rejecting the donor cells when he receives them. We'll refer to it as his "Man Purse". As if dealing with the awkward port in his chest when taking his daily shower wasn't enough, now he's got this purse too. Oh well.

Ray playing on his computer with his "Man Purse" strapped on him.

The man-purse has a box held in a plastic pouch that has a tube running from it into one of the ports in his chest. 

 If you're picturing Ray laying around all day in a hospital bed, that's not how it is. They want him to get up  and out of bed & dressed everyday. Knowing this I bought him several sweat pants for comfort & several button down shirts so the port is easily accessible by the nurses. As instructed, Ray walks at least two miles a day & I usually accompany him. Although he is confined to this isolated unit of the hospital, he can walk out in it's halls & was told that eleven trips up & down the hall equals one mile. They want him to walk every day even when the extreme fatigue sets in as a result of the chemo & transplant.

Meals here are pretty nice with a large variety of choices.We make a pretty large selection from the menu for Ray, that he usually can't finish eating all of. That works out nicely for me because I can eat his leftovers. Otherwise they'll just throw them away. I also brought some snacks & drinks from home. They have a nice little common lounge on the wing with a refrigerator we can put things in. I am not permitted to use Ray's private bathroom but they have a couple of restrooms just outside the door that are handy to me. And if I actually stayed here 24/7 (as some families need to do) they have a very nice shower area available for them. We are so fortunate to live close whereby I can simply run home to shower, pick up things I may need, or do laundry, etc.

Yesterday I had a small headache most of the day (I think from lack of sleep) so last night after the nurse got Ray's chemo started, I popped two Motrin PM's & retired to my newly made - now comfy bed & slept very well, thankfully.While I slept, Ray received his 2nd round of chemo & that went fine. I'd hear the nurse come in throughout the night but it really didn't bother me. She kept the lights down to a minimum & whispered to Ray. Who would have ever thought I'd be ok with another woman whispering to my husband in bed & in semi-darkness!? LOL 

There are about a dozen other transplant patients on this floor right now & as I over hear some of their stories, I must count my blessings & be ever so thankful that we live so close to the hospital. Some live hours away & therefore the caregivers are pretty much confined to staying in the room. And they must find a laundry mat to do their laundry. After a patient is released from the hospital, they must remain within a 15 to 20 min. drive from the hospital for the next 100 days & continue with frequent hospital appointments, sometimes daily. I on the other hand, can easily & quickly go home if I want to, knowing that I can return quickly if need be. I overheard a group of 4 people today say that they are from Puerto Rica & don't even have a car here! And unfortunately insurance usually doesn't pay for hotel stays, which even with a discount for hospital guests, runs about $100 per night! Yes indeed; we are mighty fortunate to be where we are right now.

Admitted to Hospital Today

There's no looking back now. Ray was admitted to the Moffitt Cancer Center today to start the process of receiving a stem cell transplant. The first transfusion of chemo began tonight & it will be repeated for the next four nights. While Ray undergoes his days of chemo, the donor (whoever & wherever he is ??) will be receiving daily injections to stimulate his good stem cells & then those cells will be harvested from the donor's blood & shipped to the hospital here in Tampa. The donor's good life-saving stem cells will be transfused into Ray's body on Friday in the same manner a blood transfusion is given.
                                  

Receiving the chemo now

Many have asked us if Ray will have a phone in his room & what can he receive in his room. Because of all the precautions taken to avoid any germs, Ray will be in semi-isolation in the special Transplant   Unit of the hospital where they are very strict & cautious regarding what's permitted in his room. Therefore he is NOT permitted to have live plants or flowers. However cards are certainly welcome. And he will also have a phone. (Mailing address & phone number below.) Ray & I will both have our laptops with us & therefore any messages sent via email and/or Facebook will be seen by us quickly as well.

Modern technology - gotta love it! We have set up Skype on both our laptops so that we can actually communicate with family members via an application that allows us to see live video of each other on our laptop screens. Great G-pa & Randy really like it too! It's kind of comical to view their excitement when we're visiting with them this way.   It's the next best thing to being there since the distance makes it impossible for them to actually come to the hospital to see Ray. 

Address:
   Ray Beneker - Rm# 4717
   Moffitt Cancer Center
   12902 Magnolia Dr.
   Tampa, FL 33612

Rm. Ph. # 813-745-2457
Be aware however that Ray might not always be available to talk with all that will be going on with him, so please be understanding if  when you call, he can't talk just then.

Ray's hospital room is very spacious & comfortable, complete with a comfy recliner, cable TV, a sleep sofa for me & his own large private bath.  And we like it that there is a thermostat that allows us to set the room temperature that's most comfortable for us. The view outside from his window is nice. It overlooks a garden area & the USF (University of Florida) campus area beyond that, complete with lots of palm trees. The Moffitt Hospital sits in the middle  of the campus. I think Ray's going to be very comfortable here. And I am ever so grateful that we live only a 15 to 20 minute drive from it so I can slip home occasionally when I need to. 
 

Room setup. The mini couch under the window opens into a bed.

The 'View" from Ray's room.

How Transplant Expected to Go Down

As I write this blog update, we are now only two days from when the ball will really start rolling. We had our last meeting with Ray’s transplant doctor this morning & ALL SYSTEMS ARE GO for Sunday’s admission.

Because several folks have asked us for more details about just what’s going to happen when Ray goes into the hospital, I thought it easier to update my blog with those details, thus today’s post.

Sunday evening will be the first day of Ray’s ‘conditioning chemo’. This will consist of four consecutive days of his receiving high intensity chemo to destroy all of his stem cells (both the good & bad cells). This is necessary so that when they transplant the donor’s stem cells into Ray’s body, those foreign donor cells won’t attack their new home which is Ray’s body. This chemo will also take Ray’s immunity down to zero, thus one of the reasons for the need for hospital isolation for a month. They tell us that Ray won’t really begin to feel the common side effects of the chemo until a week or so after he receives it. Those could include nauseousness & extreme fatigue among other things. So the chemo will be administered Sun – Mon – Tues – Wed. Day 5 (Thursday) will be a day of rest.

On the 6^th day (Friday) the transplant will occur. One misconception by many about the transplant is that folks automatically think a transplant is surgery. In this type of transplant it is NOT surgery. Rather it is similar to a blood transfusion, but with stem cells that have been harvested from a donor’s blood. It’s a fairly simple procedure to transplant the donor’s good stem cells into Ray’s body. It’s from this point forward when a really close eye must be kept on Ray to see how his body reacts to the new cells.

One of the biggest problems that can happen is that when the donor stem cells make their own immune cells in Ray’s body, the new cells may see the patient’s cells as foreign and turn against their new home. They could possibly attack vital organs like his kidneys, liver, heart, etc. 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. The problems can range from mild to very serious but they do have drugs to combat any issues that would occur. We are hopeful that because Ray is having this transplant while he’s still in relatively good shape AND because the donor is an 18 year old young man with good healthy cells, he will not experience most of the serious problems associated with GVHD. Thus another reason for the month he must remain in the hospital with around the clock monitoring.

Hopefully this answered the questions some of my blog followers may have had & cleared up any confusion on the subject. It’s now time to pack Ray’s suitcase & get on with this journey.

Family Visits Before the BIG DAY

May 1st today. A new month that will undoubtedly be a memorable one for us. Let's hope it's in a good way.  April was very good to us in many ways. Both of our children & all five of our grandchildren made it down to visit us. The time spent together was precious, especially knowing what their daddy & pap is facing. We all savored the good days & the time we were able to spend together while Ray is feeling so well.

And so everyone is now gone back home to Indiana & we are are quietly passing the next few days as we wait for Ray's hospital admission on Sunday. I have learned how to flush his catheter lines daily so that we are not having to drive every day to the hospital to have it done. It isn't nearly as bad as I thought it was going to be, thankfully. Just call me "Nurse Good-body". I'm doing things that I never dreamt I'd ever be doing. Just goes to show that we never know what's down the road.

Now to share a few photos from this past month of our precious family! Love them all!

Left: Brylee & Gage   Right: Ray, Charla & Hailey

Ray III, his fiance Angie, & Ray Jr.

Ray IV, Pap & Raegan

Pam & Charla

Lft to Rt: Gage, Charla, Brylee, Pam & Hailey

It's a Tea Party! Ray IV, Raegan & Grt-G-pa (Ray Sr.)

~ Romance on the Beach ~ 40 yrs of marriage & still in love... <3