Monday was going to size up to a very busy day.
First on the agenda was an appointment with my transplant hematologist. This is the doctor that is in charge of "curing" me so to speak. After Dr. Barve, my regular hematologist, has pushed the MM/AL into remission, then it the transplant hematologists job to really make me sick so he can fix me. This appointment is strictly a new patient consult so it all about what he does, his experience, more info about my disease and how he plans on fixing it.
The short version is that I need a Stem Cell Transplant (STC). There are two flavors of this procedure, the first is call Autologous and the second is Allotropic.
The autologous SCT, which is what I would require, is where they chemo you until they can get good Stem Cells from your own body. They then harvest these cells, polish 'em up with some turtle wax to get 'em nice and shiny, and then the fun starts. The hit you with bas a$$ chemo and radiation to kill off your existing bad bone marrow. Bad bone marrow, naughty bone marrow!!!!! Why can't they just hit it with a stick? So during this time you have no immune system. Yes the common cold will kill you. Once they've annihilated your marrow, they pump the shiny used stems cells into your body and hopefully in another week or so ... you've got you marrow and immune system back. This sounds pretty simple however go to www.amylodosis.org to see the schedule and details to this procedure. Not so pretty. Plus the con to this procedure is that the MM/AL can come back since the stem cells still have the original code. However, it is a long-term remission plan.
The allotropic SCT is where they find another human match and use those stem cells to regrow your marrow and immune system. Closest thing to a cure they have, but it comes with a potentially big down side. Host Graft Disease, this is where you new immune system rejects your body and begins to fight it off. I little light reading on this subject and you'll stay awake for a few days!! UGH.
Well once this appointment is done I run over to Dr. Barve's office for my first infusion. I get signed in, Alyson shows up, and while we are talking with the doc the subject of children come up and that we still would like to have them. Opps, seems that we've skipped a step. Chemo kills/damages fast dividing cells. I'll let you guys read a biology book and do some research here.
So, no poison in the vein for me today. We reset for tomorrow and I call the bank (use your imagination). I'm able to get an appointment for the next day so everything is going good.
Tuesday: I show up at the address 30 minutes early. One problem though, the address is a parking lot. Well I can honestly say that I'm perplexed at this point. At least I didn't end up in an alley, then I'd really be worried! At this point I've called the phone number on the front of the brochure at least 30 times and it's close enough to lunch time that all I'm getting is voice mail. So instead of having a fight club moment in the parking lot, I see that there is another building associated with the hospital complex close and proceed to try and find someone to give me directions. this is where the funny part comes in to play. I get to the information desk and ask them for the location of the "Human Health and Reproductive Services Department". However the lady sees the brochure I'm carrying and just asks for it. Something to let you know when you get a disease like this ... ego goes out the window for the most part ... so I hand her the brochure titled "Sperm banking for the cancer patient". She looks at me, I smile, she starts dialing ... frantically I might add. While she is doing this one of her co-workers comes up and wants to help. She gets the low-down and glances at the cover of the brochure. She looks at me, I smile and she stands staring at me uncomfortably long enough to attract the interest of their boss who quickly exits her office and repeats this process. So now I've got two women trying very unsuccessfully to start small talk with me while the receptionist is trying to desperately find out where I belong and get me the hell out of there. After about five minutes of this ... the location was found, relayed to me and I imagine they were extremely happy to be rid of me!
The rest of the day involved going back to my hematologist, relaying my humorous story and getting pumped full of poison, on purpose, for the first time ever. It was uneventful, till Thursday rolled around ... and that deserves an entry unto itself!!!
Til then, stay safe!
Hello Ed,
ReplyDeleteMy name is Jimmy. My wife works with your wife. I have read all of your blog and wanted to say that I believe that you have found the best doctor's office in the world. If I recall there are 5 doctors that work out of that office: Dr. Berryman, Dr. Fay, Dr. Aqura, Dr. Vance and Dr. Pineiro. Dr. Fay told me that he was the doctor that started the stem cell transplant program there at Baylor back in the 80's. I too have had a stem cell transplant for a disease called Severe Aplastic Anemia (dead bone marrow). The staff at that office are the best. My doctor was Dr. Joseph Fay. I called him the gentle giant. He's a big man but is also the most gentle man I've ever met. I am 8 years post transplant and am doing great. No more medication or doctor visits. I received an unrelated stem cell transplant which as you noted in your blog has the potential for various other issues know as Graft vs. Host disease. Well 2 years after my tansplant and a spleenectomy I got a clean bill of health. I realize that you have a much harder road to navigate than I did and I pray that some day you will also be able to tell your story of how you beat your disease. May God bless you and be with you and Alyson. Keep the faith.
Regards,
Jimmy