Thursday, June 30, 2011
Better late than never! As promised, here are some pictures of Moffitt’s Transplant Center, my room and view. I will also cover how the confusing pre/post stem cell transplant schedule works.
Let’s start with a picture of me and my rooms interior. Note the full head of hair and ample mustache–those won’t be around long! Give it five more days or so. Lots more pictures of this handsome guy to follow!
Next, here is a picture of what I see looking out my 4th floor window. Nice view! It is overlooking the cafeteria patio. Love the palm trees.
This is a picture of the erasable calendar board the staff leaves in your room so you and they can plan ahead and estimate your progress.
The way they figure the transplant days can be confusing. For example, the day you are admitted is actually Day -3. For me that was Tuesday. So Tuesday is Day -3, Wednesday Day -2 and Thursday Day -1.
You are admitted after your central line/catheter is surgically inserted into your chest the morning of Day -3. For some unknown reason, high dose melphalan chemotherapy is only given on the 10’s. 10 PM and 10 am.
So I received my first chemo infusion at 10 PM Tuesday, and my second at 10 am Wednesday.
Turning back to the calendar, Friday is Day 0, otherwise known as my birthday. All counts lead into or away from Day 0. Saturday is Day 1 and Sunday is Day 2, for example. So when a RN mentions my lowest blood counts should be around day 7 or 8, she means 7 or 8 days from Day 0.
Easy to understand–not so easy to get through. But so far so good…
Wednesday, July 6, 2011
Here is a picture of one of my oncology nurses, Vance, preparing to start the second of two high dose melphalan infusions…
Hard to believe all of that poison fits into this little bag!
Pattie shot a picture of me receiving my own stem cells, flown-in fresh from Mayo Clinic. Why no more pictures of my “birthday?” (The term used to signify when a patient’s stem cells are infused back into their body)
We couldn’t take more pictures of the actual stem cell infusion, because PBS was filming the procedure for public television and we didn’t want to get in the way. How cool is that?
Saturday, July 9, 2011
When Life Gives You Lemons… Shave Your Head!
Ready to have some fun? I know I am!
I’m feeling a bit better. Good enough to notice my hair has started falling out. Since what was left seemed lifeless (literally) and gross,I figured it was time to get it shaved off.
They say a picture is worth a thousand words. Keeping that in mind, here are some snapshots you might find amusing..
This is the healthiest I will look for a long, long time…
Having such a thick, full head of hair has always been a source of pride for me–especially since my father was “follicularly challenged” from a very early age. Pattie took this picture of me at the Tarpon Springs sponge docks after we enjoyed a wonderful “last meal” the day before I entered the hospital.
That seems like a lifetime ago–not two short weeks. Pattie has been working a lot, but has still found time to visit me often. During her visits, she has had some fun, decorating my room and adding crazy and creative personal touches from home.
One of her fun, over-the-top decor additions included mounting a large beachfront scene on the back of my door, featuring two flamingos named Weeki and Wachee. Where better to get my hair sheered-off than in front of Weeki and Wachee?
That’s Weeki on the left. She’s not happy her head was cut out of the shot…
As you can see, I was taking this all very seriously–which is why I’m posing as a Buddhist monk!
One of the little extras Moffitt provides for transplant patients is the ceremonial buzz cut. This young stylist, named Michele, from Magnolia’s Hair Salon was a lot of fun–and did a very good job.
Think a Mohawk could work?
My nurse,Serena, (right) was kind enough to take the pictures
After deciding my “cool” Mohawk would just fall-out anyway, the group fest it was best to “go all the way.” Talk about making the most out of a bad situation…We sure had fun!
There will be plenty of time on my transplant journey to be serious. For now, I just want to enjoy the moment and worry about how Pattie will react to my new look when she comes to visit today…
Friday, July 22, 2011
Having left you all in suspense yesterday afternoon, the least I can do is fill in the blanks and let you know how things turned out yesterday.
Yes, my transfusion did lift my platelet number over 50. This allowed Amelia to remove my central line on the spot!
We were all laughing as Pattie took these pictures. Here Amelia prepares the wound with disinfectant.
Success! Amelia has removed the alien object from my chest… A Hohn catheter. I must say it worked like a charm. No infection. No difficulties handling the dozens of daily IV’s I endured during the early part of my stay.
Since I had already collected my stem cells, my docs could use a smaller Hohn catheter instead of a much larger Neo Star. The Neo Star is similar in design, but the main line is much larger to allow greater blood flow. It is also more difficult to remove.
Lucky me! Very little discomfort when the line was place, or as it was removed. Let’s head home!
Sure, I still have a sour stomach and I’m pretty warn out.. But it feels great to be home!
Feel good and keep smiling! Pat
Monday, August 1, 2011
Happy Anniversary: I’m One Month Post Transplant Today
Is it an anniversary or a birthday? I’m not sure. All I know is I received my stem cell infusion one month ago today.
In a lot of ways I’m amazed at how well I’m doing. Yes, I sleep several times a day. And my stomach continues to be upset most of the time.
All I can do is thank God as I continue to improve.
I will share some of those details with you tomorrow. For now, I would like to thank my caregivers who helped me get home and feeling well so quickly: My amazing wife, Pattie. My sister Joan, my sister-in-law Mary, his husband Tom and son Bob, and my long time friend from Wisconsin, Tim, and his wife, Lisa, who left work and flew-down for ten days to help.
Tim is the Mayor of Wisconsin’s third largest City, Appleton. Lisa manages a large Fox Communities Credit Union branch in Green Bay. For them to take so much time to help me out was amazing!
But speaking about Tim and Lisa… A funny thing happened on their way down to Florida.
The plan was for them to serve as my outpatient caregivers for the last week or so at Moffitt. We had planned everything perfectly–except for the fact I was released and sent home ten days early–the day they landed in Tampa!
So what to do with a hard working couple who want to help? Put them to work!
Thanks for installing the new ceiling fan and light fixtures in the kitchen, guys! And for the cooking and cleaning and help getting me back and forth to medical appointments–and for being such good friends when I was down and frustrated about feeling so lousy.
Before you feel too bad for our newlyweds (They were married one year ago in Panama Beach), the couple did find some time to relax and beat the heat…
Ten tough days like this. No wonder they didn’t want to go home!
I will go through some of my numbers and update my condition and talk about lingering side-effects tomorrow. For now, I want to leave you with a fun picture of Lisa and Pattie, toasting all of my readers and thanking you for your kind words and support:
Feel good and keep smiling! Pat
Friday, August 26, 2011
Here a a shot of me and Nature Coast Multiple Myeloma Support Group Leader Dianne Terry. Dianne is a tireless caregiver to her husband, Herb. This was one of my first public appearances since returning home from my auto SCT.
As you can see, I’m “hairless,” a bit gaunt and so tired I can barely keep my eyes open.
But you can tell I was happy to be back together with my myeloma friends again. I was even wearing a burgandy shirt, writst band and IMF ball cap. What a team player!