Larry’s Medical blog

The Bone Marrow Transplant team released me from the hospital on Tuesday, Oct. 16th. I was happy to be home. Being in my own bed and eating semi-normal food has made a difference. Not that everything is wonderful though. I still have a long road ahead of me.

Generally, I am feeling pretty good. I do not have any serious pain. Although the neuropathy in my feet has returned and is uncomfortable, it is not as bad as it was at the end of chemo.

Obviously my recovery from the transplant went real well. I was released from the hospital after only 13 days, which is faster than average. I am still very happy that I did not get the dreaded chemo mouth sores. My appetite is ok but not back to normal levels. I am not having trouble eating but have an occasional nausea episode prior to a meal. I have lost about 10 pounds from the time that I was admitted until now. Sleeping in my own bed is a whole lot better than in the hospital.

I will be pretty much homebound for the next 100 days. This imprisonment comes with a complete set of instructions regarding special diets and immune system precautions. Hopefully I will be able to keep myself occupied for this time and manage not to go stir crazy. One of the effects was something that nurses talked with us about called it “chemo brain”. Patients report that they just don’t feel like themselves. I am definitely feeling this – it is hard for me to focus on a single topic. For example, none of plans to work on the genie web site have happened, and I cannot seem to wrap my brain around any of it right now. So I walk around trying to figure out what I am supposed to do all day. I am hoping that this stage does not last long… I’m finding myself watching a lot of “spaghetti westerns” on cable – at least it’s not the soap operas.

I am sick and tired of Catheter Zeta Bones and Elsie. We have an appointment on Monday to see the Urology team the find out what is happening, or is not happening, with my bladder and prostate. Elsie is scheduled to be removed on November 6th. That will be a good day.

The next three big steps from a cancer treatment standpoint will be: meeting with the Transplant Team on November 6th to review blood level progress since being released from the hospital; meeting with the Chemotherapy Team on November 13th to review progress since chemo; and finally, the “transplant +60 days bone marrow biopsy” which will reveal the real success of the bone marrow transplant itself.

From this data we will make the decision about a second transplant: if at all? how soon? from whom?

That’s the latest news from Hamburg,

-larry

The comment from the doctor this morning was “you are a poster patient”.

On Saturday, I bottomed-out on my blood counts and am now on the way up. My progress in the last two days has been very good. I have not had all of the terrible symptoms that were described to me. I was very fortunate to have missed the mouth sores. My hair started falling out two days ago – still a lot left but won’t be for long. I am still tired and sleep a lot.

The hardest part has been trying to eat. I have worked hard to get the food down. Even though my numbers are up my appetite has not returned to normal. That may be the result of the wonderful hospital food. Hopefully things will be better when I get home. For the most part I am feeling pretty good, although my earlier problem with Catheter Zeta Bones has not been resolved.

Irene has been here with me every day. Usually from 7:30am until 9:00pm. I do not know how I could have gotten through this without her encouragement.

So after nearly two weeks in the hospital, I have been told that I have made enough progress from the bone marrow transplant that I will be discharged on either Tuesday or Wednesday and sent home to continue to recover from there. I will probably be meeting with Urology later this week. Until then a portable Catheter Zeta Bones will be coming home with me.

I want to thank everyone for their encouraging comments, emails, cards, pictures and cookies. They helped me get through my days here at the hospital.

-larry and portable Catheter Zeta Jones (Forrest Pump was disconnected)

Well, we are now 4 days beyond the Transplant and 6 beyond the Melphalan chemo infusion. Of those 2 events, the one-time chemo infusion remains the driving factor affecting my frame-of-mind, health, appetite, digestive functions. My blood counts are continuing to fall (as expected) and hopefuly they will bottom-out in the next few days. After that (lord willing and the creek don’t rise) we turn the corner and begin a gradual climb to recovery. And, about a week after that we go home.

For the most part, I am doing pretty good. I am not in any serious pain; I am tired and sleep a lot. I managed to get rid of the clanging pump. They replaced it with a much quieter pump which I now call Forrest Pump. But at least I can sleep at night.

The chemo seems to have affected my bladder functions so, four days ago, I was outfitted with a catheter. The good news is that I don’t have to get up in the middle of the night to go to the bathroom; the bad news is that this is NOT real comfortable when performing my daily 1/2 mile hike for exercise. This morning, the urologist decided the catheter was no longer needed, so out it come (ouch!). This afternoon he decided it was probably necessary after all, and ordered a new catheter inserted (ouch2!). I have come up with a nickname for my catheter that I think is appropros: (drum roll) CATHETER ZETA BONES!

That’s the latest from Ann Arbor,

Larry, Forrest Pump and Catheter Zeta Bones

All,

Well, yesterday’s transplant went quite well. A little weird on the receiving end… the frozen cells rolled into my hospital room inside a stainless steel liquid nitrogen container that looked like R2D2. The cells are normally maintained at minus 160 degrees C, and had to be warmed in a liquid bath immediately before being pumped into my veins. The entire procedure took about an hour from start to finish…. then I was real tired and just wanted to sleep.

I got a good nights sleep last night, compared to Wednesday night which was awful… I am connected to a continuous feed IV pump that is very loud – had to get used to that thing clanging all night long.

Not real easy typing in this hospital bed – perhaps I’ll write more when I can get more comfortable.

-larry

My fashionable haircut

Sibs,

Yesterday was the ugly Melphalan chemo infusion (as an outpatient) and this afternoon I’ll return to UofM to be admitted for my Bone Marrow Transplant/Stem Cell Recovery.

LAST-MINUTE PRE-ADMISSION PROCESSES

I prepared for my admission to the hospital by getting the recommended “pre-chemo buzz haircut”. The medical staff advised that, since it is certain I will lose my hair during this treatment phase, many patients find it better to get a buzz rather than experience the emotional trauma of having it come out in large clumps in the shower or on the pillow every night. Thus, my new image.

Yesterday’s schedule for a chemo infusion was much like every other infusion for the last six months: go to the lab for the blood draw, meet with the docs regarding the lab results, go to the infusion area and get the drugs. Two things were different than normal:

– it took THREE HOURS for my blood analysis to get posted in the computer, messing up the schedule and making me and the docs very unhappy. We did not get home until after 8:30pm.

– the Melphalan chemo is nasty and required special measures. First, Melphalan is one of the those drugs that give you nasty mouth and throat sores, so they advise you to eat/chew ice chips continuously while getting the infusion. Ice cools the mouth and throat, and reduces blood flow, thus limiting the impact of the chemo in those area (or so they say). Second, this drug has special administration requirements so it took about 2 hours, along with 1 large bag and two large bottles on the IV tower, to get this into me.

COMMUNICATION FROM ME WHILE IN THE HOSPITAL

I have been trying to develop a better mechanism than daily emails for keeping you updated on any medical news during my hospitalization – some of you may want to know on a daily basis how I am doing; others may find daily email to be overwhelming. So, I have started a personal blog – short for web log. Click here: www.larrygauthier.com

A blog is very much like a public journal or diary, designed for one person to share his/her experiences and ponderings with a large community of people. For the most part, blogs are intended as one-way communication, although you can press the “Send Feedback” button and reply to a posting – just keep in mind that your feedback will be visible to the entire group. For more private replies you should probably send me an email (which I will be reading while in the hospital).

For phone calls please DO NOT call the hospital directly, see email instructions with cell phone numbers.

That’s all for now. Next Transplant Update will be from the hospital via the blog (assuming that the patient wireless network functions properly).

-larry