Pat’s Place: Thoughts From A Brand New Stem Cell Transplant Patient
Last week I promised to keep everyone updated as I prepared to undergo my first autologous stem cell transplant.
Despite a few close calls—like a final insurance approval that didn’t arrive until 5:01 p.m. the day before I was scheduled to be admitted—I am sitting here as a stem cell transplant patient in Moffitt Cancer Center’s brand new Bone Marrow Transplant (BMT) unit. And I’m happy to say that I’m alive and doing well.
On Tuesday night, I received my first high-dose chemotherapy infusion of melphalan (Alkeran). As I write this on Wednesday morning, I’m getting ready to start my second and final dose.
So far, so good! Only a jumpy stomach and a bit of insomnia, most likely caused by the dexamethasone (Decadron) they gave me one hour before my chemo.
It is a surreal experience walking down the hall, feeling good, but seeing large signs hanging on the doors to other rooms that say things like “Smell sensitive: no perfumes or cologne, please!” or “No food inside!”
We are instructed to walk a lot. But for some reason, I am the only one walking.
Besides “Smell sensitive” and “No food,” there’s no evidence of other patients—even though I’ve been told the transplant wing is almost full. I hope that’s not a scary glimpse into my near future!
Still, thanks to all of the advice and well-wishes from my wonderful readers, I am staying positive.
It helps that the staff here has been so encouraging. Even the BMT physician on call this week, transplant specialist Dr. Joseph Pidala, has reassured me that I may make it through this with minimal negative side effects. Works for me!
By the time you hear from me next week, I will have received just over 3 million of my own stem cells, and my blood counts should be at their lowest point. But I don’t care if they need to prop me up and help me use a keyboard, I will find a way to get you news about my progress.
Wish me luck! Feel good and keep smiling! Pat
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Pat, Thanks so much for the update. I have been eager to read your post. My husband and I are keeping you and Pattie in our thoughts and prayers. His SCT evaluation is scheduled for next week. Take care. Cheryl
Good luck with everything Pat.
Good luck Pat as you go through your stem cell transplant. I enjoy reading your updates and wish you well. You and your wife are in my thoughts and prayers. Having been diagnosed myself in 2002, I have also been through stem cell transplant, twice. While you may feel a little under the weather for a couple of weeks, you will get through it. Life will be wonderful again when you hear those words "cancer free"! Stay positive and strong! Looking forward to your updates. You are an inspiration! Take care.
Good luck-you can do it. Had mine 2 years ago. Not an easy road but well worth it. I think I must have been one of those patients you never see! I had a hard time trying to get my walking in. I had some infection and after putting on all the protective gear to go out, I was too tired! But it did get better after a couple of weeks. Went back to teaching Kindergarten 5 months after my transplant.
Go, dude!!!
you might be my twin Pat.
I'm sitting here at UCSF on day 11 (June 20th) post Melphalan. I had my melphalan in one dose and they topped it off with Velcade a few days later. I had transplant 36 hours after Melphalan. (Tastes like tomato soup)
I was one of those walkers wondering why nobody else walked. Now I'm a far less frequent walker. Pretty darn tired. Even picking up the laptop and logging on is a chore.
Take care, Stan
Thanks and best of luck, Pat. I'm queued up for the transplant in October, so I'm reading your column with great interest.
So many kind words! Sorry I wasn't available to answer each comment/well wish individually. Sort of a bad day today. Post melphalan nausea. Hey Stan--you get that, right? Reading these positive messages made my day! I feel better already! Pat
Sounds good Pat. Continued good luck.
You asked last week if I already had a transplant. I'm still taking a maintenance dose of Revlimid, but I am well aware that an ASCT my be in my future.
Looking forward to next week's post.
Linda
Pat, you will do well - you have such a positive attitude and know quite well what may be in store the next few weeks. Just keep thinking "this too, shall pass". Prayers and thoughts going your way. Be well my friend. Rex and Kay
It's been a year since my sct ... more like an endurance test. I wish you the best, knowing you'll do just fine.
Hi Pat,
I'd like to wish you well from across the Atlantic (Netherlands). Lucky you that they make you walk. My husband has had two transplants and was kept in isolation for three weeks both times. He was not allowed out of his room. Mind you, he didn't have the energy anyway.
The severe tiredness came and went and - him being a keen golfer - he is back on the golf course enjoying himself walking 9 or 18 holes! OK, some days he's more tired than others, but not as bad as right after the transplant. Please remember - you never walk alone....
Alls the best,
Lia
Congrats on your new cells Pat. I wish "them" many years of happy play in your bone marrow, and may they make you healthy.
Nausea was a BIG BIG BIG problem for me. They had trouble finding the right drug to help me with that, but I did walk anyway. I carried a bag with me sometimes in case I wouldn't make it back to my room in time. Of course it helped me sleep a lot too, so the nurses loved me. I told them to stop waking me in the middle of the night (as they check temp, blood pressure, etc.). I pinned my hickman line to my top so it wouldn't get pulled out of my body, and told them that they can access that to get/give me stuff and just let me sleep. It was so funny to see their reaction. I was the only patient that slept through the night, but of course the gravol and other stuff they gave me was the reason.
I hope you are also rinsing regularly and often. Even if it makes you gag and upchuck, please remember, the chemo keeps working and having mouth and/or throat sores is probably not fun.
I am so happy to read your update, and to know all is well. I personally chose not to use any technology during my first 10-12 days of recovery.
Wishing you a speedy and easy recovery, your MM blog follower ...
HannaO
Dear Pat,
Boy, a lot is going on with you as I write this! I believe you will have no problem using your computer to keep us updated on your progress, even if you fit it in between naps
I had an ASCT 7 weeks ago, and I was using my laptop within a couple of days. I was blessed to have minimal side effects that were well controlled by meds (except for nausea at times) and I wish the same for you.
Keep up the walking as your energy level permits. I rarely saw any other patients in the hallways, but the nurses were all very encouraging and said I would recover faster. That was a good motivator! As far as the doors of the patient rooms being closed, I was told the special ventilation system in the transplant unit worked better if I kept my door closed.
Now that I am Day +50 post-transplant, I am amazed at how well I feel. I am not working so I have not had to push my body, but I am resuming some of the daily household chores my husband had taken on, and I do not nap every day as I had been doing. I'm gradually resuming a normal life, and it feels good!
You are so conscientious about your health, and I predict you are going to do very well!
Looking forward to hearing your progress.
Linda Mc
Pat, read your post on your MultipleMyeloma blog, could have cried. You hang in there my friend, there will be a rainbow at the end of "this storm"!!! Rex and Kay
Hi Pat, posting here as I just can't on the other blog. I feel so bad for you and I realize again how lucky I was. Know that the whole world is watching, well at least a lot of the MM world, and many prayers are sent to you and Pattie. Thank you for posting when it is so difficult to do so. Linda
So many kind thoughts... Thanks you all! I will find a way to make it through this- Pat
Pat, sending postiive thoughts your way. My dad is day 30 post transplant and biggest complaint is fatigue. He is sleeping more than ever, but doing pretty well considering what his body has been through. It's nice to here for other readers who have or who are going through the same thing. It makes you not feel so alone. Much luck and love to all MM patients out there!
Amen! Good luck to your dad... I understand how frustrating it is to be tired all of the time- Pat
Hi Pat,
Thinking of you and sending positive thoughts and prayers your way.
Everyone at the IMF is cheering you on!
Joanie
Hi Pat, I was reading your blog on your status. Keep it up! I just got out of Dana-Faber in Boston Sunday, day +12 from transplant. I felt the same side effects you described today. It was not great but I plowed through. On day +10 the cells took, white blood took the leap from the bottom, and the those side effects reduced significantly. So I bet you are just about to hit the turn and head for the home stretch. Best of luck
Pat,
My name is Marc Silver and I am the local Account executive for Tne National Marrow Donor Program. If you are up to it I would love to talk to you more about what you are going through. I am always looking for people to share there feelings about a transplant.
Best of luck,
Marc
Msilver2@NMDP.org
Hi Pat, glad the nausea has settled. I was one ugly bald chick, and I have the photos to prove it. I gargled with salt water and missed all mouth issues with SCT. However, mouth has been sore (inflamed) every day I have been on revlimid. Use that ativan. You are almost through the bad part. Linda
Yep, Linda--I have one "bumpy-ass head!" But mine is coming off,ready or not!. I will be mustacheless (a word?) for the first time since high school!
Pat,
I am amazed you have the strength to even look at laptop! Hang in there, it can get as bad as it gets, but then it gets better. And better. And better. It's so worth it. I told you last time I wrote I had started a blog. I even wrote a post about how important it is for SCT survivors to connect with each other: Your readers might be interested in checking it out: http://viewfromthehandicappedspace.blogspot.com/2011/06/human-touch.html
You are such an important part of the process for others. Keep it up!
Laura-
Thanks for the heads-up... I will give your new site a look- Pat