Perhaps Ozzy said it best.
My friends and family ask, “Are you sure you’re ready to come home this time? Did you try and talk your doctor into early release?” They are referring to my last discharge from the NIH, where I tried to get home before Mardi Gras, only to turn immediately around the next day and be admitted to the Our Lady of the Lake Hospital in Baton Rouge for sepsis for 2 ½ weeks.
The fact is, this time, I simply said that a goal would be to be home by Easter. When my neutrophil count started to come up, Dr. Townsley started talking about releasing me this week…and a day earlier than I anticipated!
I know I’m a little stir crazy right now, but I wanted to thank the doctors and nurses and all the staff at the NIH for helping me through this. The pain I had 3 weeks ago in Baton Rouge was so unbearable…and the NIH pulled out the “big guns” to put me back together to now fight my Aplastic Anemia. Plus I have a newfound respect and admiration for nurses. They do a wonderful job.
So yes, I’m coming home today if everything goes smoothly…no fever, no symptoms, and of course, no flight delays! And boy am I looking forward to seeing everyone, sleeping in my own bed, eating some great food, and hanging out at the Brewshack with family and friends! But if you do visit, I apologize in advance for being a “germ-a-phone” until my neutrophils come back in. And don’t even think about coming to see me if you are sick!
But I’ll be back in about 3 weeks for my 3 month follow-up from my initial visit to the NIH. Hard to believe it’s been almost 3 months since I got that horse serum and those side effects!
The bad news is that I’m probably a month behind my treatment and response schedule for the Aplastic Anemia because of my sepsis. The good news is that now that I’ve received the granulocytes here at NIH, and started back on chemo and the experimental eltrombopag drug, I’m back to treating what started all this. And it seems to be working since my counts are increasing. They say my bone marrow is ‘awake’ now and just needs to start pumping out cells.
Most importantly, my neutrophils are up to 200. (They were 10 at my last discharge!) What’s really cool is that my TheraBand workout for the past 3 times has consistently shown a 30-point bump immediately after each workout that’s maintained the next day, which I rest from resistance training. I continued to walk about 2 miles a day. #ExerciseIsMedicine! But who knows, maybe it’s the 8 medications and 26 pills I have to take everyday. Better health through chemistry?
I will continue my treatment (and exercise) at home under the care of my hematologist/oncologist Dr. Cataldo, including weekly blood tests and transfusions if needed. The longer the time between transfusions the better, meaning my bone marrow is starting to produce the cells I need. In the mean time, please continue to donate blood and especially platelets, which I seem to need more than blood. Thanks to all of you who have given the gift of life to me, who I hope I recognized on my Donors page (if not, let me know!).
On that note, I want to thank my good friend John Hisamoto, a physical therapist / athletic trainer in Tampa who owns Pro-Active Physical Therapy, who helped organize a blood drive, “Pints for Phil” with the University of South Florida to get over 100 pints!
However, we’re not out of the woods yet. There still remains a chance that I may need a bone marrow transplant. I will need to find a full match, and that takes time. The chances of successful bone marrow transplant can depend on the length of time from diagnosis to transplant. Right now, we don’t have a full match….but that full match may be one of you. Or you might be the full match for someone else who desperately needs a transplant.
All it takes is a quick mouth swab to see if you’re a match for someone. If you are, all you usually have to do is provide your blood for a recipient (not your actual bone marrow!) So, we’re having a combination blood and bone marrow donor drive on Saturday, April 26 at the United Blood Services at 8234 One Calais Drive from 8AM to 2PM. (Just off Essen and I-10). You can donate your blood AND get swabbed for bone marrow donor at the same time. It’s 2 for 1! Talk about efficient! (Special thanks to my sisters in law, Brandy McIntire and Kim Heard for helping to pull this together.)
All of this brings me back to one of my favorite bands, Cowboy Mouth (of “Jenny Says” fame), from New Orleans. I met the founder and lead singer, Fred LeBlanc on a plane to Phoenix a few years ago and he invited me to his concert. I immediately fell in love with their music. One of my favorite songs is “New Orleans” from the same album….my destination this evening before reaching hometown Baton Rouge!
Thank you again for all of your prayers, thoughts and MOJO. It seems to be working, so keep it up! Hopefully I’ll be over this soon and won’t have to wear a mask anymore. That way I won’t have to start shopping for new mask designs!