Recipient's Perspective: Part 2

Part 2 is here!

After about a month of feeling fairly normal, a few trips to Tampa for preliminary tests, and classes on what to expect as a patient or a care-giver, it was now April 2010 and time to check-in as an in-patient at the Moffitt Cancer Center.

While the initial chemo (in West Palm Beach) was very strong, we were warned that the pre-transplant chemo would be even stronger. They were correct. Essentially they completely kill your bone marrow so that all blood being produced after the transplant will come from the new marrow. As in the past, the reaction to the chemo wasn't immediate and when I got the transplant I was still feeling fairly good. We didn't know why at the time but the transplant was delayed one day and we were told it was being flown in and would arrive late the day of the planned transplant. Too late to administer that day since Moffitt had to do their own testing on the stem cells and would only perform the transplant during the day when the hospital is fully staffed. We now know what caused the delay. Sorry you had to do a second day Kylie.

The actual transplant (receiving the stem cells) was much easier for me than for Kylie. It was very much like getting blood; hook up bags to a pump to regulate the flow, adjust and let it drip. But that was the end of the easy part. Now the chemo is starting to rear its ugly head so I'm not feeling great. I have no white blood cells so there is great risk for infection and we have to watch very carefully to make sure my body doesn't reject this important new material. A 10 for 10 match greatly reduces the risk of rejection but doesn't eliminate the risk completely. Once again, loss of hair, weight and appetite along with a variety of pain medications. All from the chemo, not the transplant. They actually have a candy cart go to each room every afternoon with candy and cookies, hoping you will at least eat something, even if it is junk food. There were a few days when I couldn't eat anything, not even M&Ms.

As the month progresses so does the healing. With daily blood tests and occasional bone marrow biopsies my progress continues and by the fourth week I'm feeling a little more human; and counting the days until I can get out of there. Tests reveal that my new marrow is starting to produce healthy blood cells. Great news!

During this month my wife is busy working almost full time, visiting me, and working with friends and family to schedule care over the next two months when I'll be in the clean apartment near the hospital.

Finally, discharge from the hospital and off we go for the 5 minute ride to the apartment. Nice, modern, 2 bedroom 2 bath apartment reserved specifically for Moffitt patients and kept spotless between patients by Moffitt employees. Without any problems, friends and family came (from Florida, Oregon, California and Pennsylvania) for a week at a time to help with my care. They cooked, cleaned, did laundry and took me to the hospital for my tests and to pick up various prescriptions. It felt like a real breakthrough when we didn't have to go every day. I'm very grateful for all of the work involved to make that happen.

While I continued to improve, the progress was frustratingly slow and at the end of the two months in the apartment I felt much better but far from normal. Looked at another way, I was doing very well for someone who had a disease that kills two out of three people. The trip home seemed to take forever but it was great to walk into our own house (and crawl into my own bed).

Part 3 will cover the continued treatment and healing.

Recipient's Perspective: Part 1

I am very excited to share this with everyone. This is part one of a three part installment from my recipient about his experience with our stem cell transplant/donation.

While playing golf at the end of August, 2009, I noticed an unusual pain in the side of my neck where I had surgery several years ago. I go to our family doctor who wants an ultrasound to see what's going on. First ultrasound was inconclusive so I'm sent to the emergency room where they have better equipment. As a standard ER procedure, they drew blood upon admission and then sent me for the ultrasound. A short time later, the ER doctor comes out and says "I'm not worried about your neck: you have no white blood cells! You need to see an oncologist ASAP"!

After a very long weekend, I go to the oncologist who looks at the ER blood work as well as his labs blood work and has me lie face down on the exam table and draws marrow from my hip. (with a local anesthesia) I get a call that night from the oncologist; I have Acute Myeloid Leukemia, he wants to see me and my wife first thing the next morning so we can discuss the treatment for AML.

"Pack a bag and check in to the hospital in West Palm Beach and plan on being there for 30 days. If the AML goes into remission from the chemo, we will look for a bone marrow donor. The prognosis isn't good"!

Physically I feel absolutely fine, none of the symptoms normally associated with Leukemia; fatigue, weight loss, fever, and a few others. I'm not sure what would have happened if I hadn't had that pain in my neck.

About three days after the first dose of chemo, I was no longer feeling fine. It really knocks you for a loop but I didn't have a lot of problems with nausea for which I'm thankful. So after losing all of my hair, most of my appetite, 40 pounds, and experiencing a variety of pain medicines, we were approaching the 30 day mark and hopefully seeing the AML go into remission. Additional bone marrow biopsies weren't promising and there was concern that they would have to repeat the first (strong) chemo which could possibly kill me; but there weren't any other options. Another biopsy a few days later gave us the good news; remission. The search for a donor could begin. Based on my age (70) I needed a perfect match, 10 out of 10 of the parameters they use to determine compatibility. We were told to expect a delay of a few months before the actual transplant, assuming they found a donor. Those few months were spent with return trips to the hospital for additional chemo, only for a week at a time, and two trips for the expected problems with infections.

We found out in late February that we had a donor and should plan on checking in to the Moffitt Cancer Center (Tampa) in early April for even stronger chemo, and then the transplant followed by close monitoring to make sure my body doesn't reject the transplant. This would begin 6 months post diagnosis. If all goes well it would be one month in the hospital followed by two months in a "clean" apartment within 10 minutes of the hospital. At some point, we were told that the donor was a 21 year old female from the US but that was all we could be told at the time.

The month preceding the trip to Moffitt was actually pretty comfortable, I felt almost human. I also knew that this was about to change.

Stay tuned for the continuation of his perspective coming in Part 2!

Big News

The blog is going to have some guest posts coming soon!

My recipient and his wife (thank you both!) are working on posts of their own recounting what the donation was like for them. It will be very interesting and eye opening (hopefully for everyone who reads this blog) to see the story from their perspective rather than from mine.

A third guest post is in the works from a reader of the blog who reached out to offer his story about his experiences with his wife's battle with cancer.

I won't give too many details as I don't want to spoil the posts so please keep an eye out for them soon!

Update #2 - 3 Years Post-Donation

Now is as good a time as any to make a second update on my blog since some very exciting changes have happened since my first update.

This past fall (I believe in September or around there, maybe a little later) I received a call from the Rhode Island Blood Center saying that they had some news for me, could I please give them a call back. So at the first chance I got, I called back. The news they gave me was wonderful - my recipient had signed paperwork requesting that we exchange contact information!

Considering that I had been warned not to be too hopeful of this exact thing happening it was music to my ears to hear that my recipient was the one to initiate the process of undoing the anonymity between us.

I filled out my half of the forms, scanned them, and e-mailed them in to RIBC. Then waited, and waited, and waited some more. It was quite the waiting game, these things have always seemed to take some time. Finally on March 7, 2013 my recipient's information arrived in my inbox. Where it sat until 2 nights ago.

Let me elaborate: it isn't that I didn't want to e-mail my recipient, because I did. The struggle I had was what to say. How do you start an e-mail to someone who you do not know, yet, feel so closely connected to?

I didn't have an answer to that. So my e-mailed waited. Then, two nights ago, after getting home from work, I couldn't sleep. My mind kept cycling through things I could say to my recipient. Since I didn't know what to say I was thinking of all the things I could tell my recipient that would tell him about me as a person. An e-mail began to form so I got out of bed, sat at my laptop, wrote it and clicked the send button. Initially I thought I would just get up, type my thoughts out, save it as a draft and then re-visit it later. But instead, it just felt right to click send

. Yesterday I received a response, two as a matter of fact (one from my recipient and one from their spouse). My heart is so filled with joy and excitement. I am hopeful that we will remain in touch and become friends.

I will continue to keep you updated.

Update

Doreen from RIBC called me today with news on my recipient, the blood center finally got the update we'd been waiting on...

My recipient is alive and doing well! Doreen said that they receive very coded responses when they get updates from other donor centers but what she could tell me is that his recovery is going well and that it is unlikely he is completely back to pre-transplant activities. She said that it is often a long recovery period and that it isn't uncommon for recipients to need plenty of time to resume normal activity levels.

I want to write him a letter, but it is so hard to begin. What do you say to someone when you can't reveal too much personal information? Doreen suggested I use lots of open-ended questions but even trying that makes it hard to write a cohesive letter. I guess I just need to sit down and concentrate solely on the letter (no distractions).

6 Months Post-Donation & Why I Decided to Register

It is hard to believe that it has been 6 months since my PBSC donation in Rhode Island. I am still attempting to get an update from the Rhode Island Blood Center, so far no luck. RIBC is still waiting to hear back from my recipient's donor center.

Now on to some reflecting - why did I chose to register with the National Marrow Donor Program. It is a question I've been asked more than once, "Why did you register?" To be honest, I'm not 100% sure myself. I don't have a family member or friend that I registered in honor of. No one close to me has had to battle blood cancer. I just knew that it was something I wanted to do.

I'm not trying to make myself seem like a saint, I'm far from it, but I have always been a selfless person. It is one of my best qualities and also, at times, one of my worst. People sometimes take advantage of how much I want to help others and put them before myself, but I wouldn't change how I am because of a few rotten apples. I always tell my Mother that I'd rather have too big of a heart than too small of one.

So when the Nursing Club at my university sponsored a registry drive I took advantage and signed up. All they asked for was some basic contact information and 3 Q-tip swabs from the inside of your cheek. Piece of cake. I crossed my fingers and hoped that someday I would be a match for someone on the waiting list. I never realized that less than 3 years down the road I'd be donating.

When it comes down to it, I guess the reason I registered with NMDP is simple: I'm young, I'm healthy, and I want to help people. You get one life and I am bound and determined to make sure I do everything in my power to not squander the gifts I have been given. To share what I have and make a difference. That is why I registered to become a bone marrow donor.


For more information on how to register to become a bone marrow donor and the NMDP click here.

4 Months Post-Donation

It has been four months since I went to Rhode Island to donate and there has been a lot going on so I thought it would be good to update everyone on the happenings.

One month post-transplant my recipient was out of the hospital and doing well. I was told that he had to remain near his transplant center for a while so that he could go to daily appointments but that he would likely be able to go home again soon. I haven't heard anymore, partly due to my own lack of correspondence which I plan on remedying after I finish this blog.

The same week I found out my recipient was doing well I graduated from college magna cum laude on my Nana's 66th birthday. It was an amazing day.

A week later my Nan collapsed after a doctor's appointment, banging her head as she fell and had to be admitted to the hospital for a week. The doctors (heart doctor & lung doctor) refused to listen to anything we told them and instead played the blame game with one another. We had to fight with the hospital to get them to send my Nan home with oxygen (her blood oxygen levels were in the 70%s, it only needs to be under 88% in order for home oxygen). We hoped that the oxygen would help, and it did, but there was still something wrong and every doctor we saw didn't care. Her regular doctor told her she couldn't ask questions "because she was scheduled for a 15 minute appointment and she'd used 13 minutes already" (not verbatum but this is actually what a medical doctor told a woman who had just been in the hospital for a week).

On July 24th my heart was broken forever when my Mom found my Nan dead in her home. I was the last person to see my Nan alive (Friday the 23rd). I am very grateful for the time I spent with her that day but I am also struggling with my own guilt. Even though I know it is illogical I keep asking myself "What did I miss? What could I have done? Did I not see something I should have?" There is an emptiness in my heart I fear will never leave. My Nan was like a second mother to me. She helped my mother raise me and losing her has shaken my world. I wake up every morning and go to bed every night sad at the loss of such an amazing person and mad at medicine for failing her.

I am going to end this post now as I am getting myself quite upset. Once I hear back from Doreen I will update again.