Let me start with the good news - my two sisters Lisa and Leslie (identical twins) are both matches and (in hospital CYA-speak) potential donor candidates! Lisa will probably be the donor, as Leslie has kids and so has antigens from when those kids were in the womb that could cause trouble. Lisa will be a great donor, and is looking forward to a little CA vacation time. We met with the attending doc and one of the fellows on Tuesday and got this news, and we are jazzed! We then went to Feiffer Burns State Park and went camping.
We had to return to Stanford on Thursday at 8:45 am, so going camping saved us a couple of hours of driving, and we got to see Mikey. He spends a week in Big Sur (Feiffer Burns) camping with the Sheffers and a bunch of their friends, and we have joined them for some time the past two years. We had a great time, ending with a great guitar/ukulele/harmonica sing-along music session. About 35 people showed up, it was cool.
Our reverie was shattered at 5 am this morning, when we had to get up, pack up, and head to Stanford for the 8:45 appointment. I made the huge mistake of not making a coffee for the road, and complained long and loud. We got to Stanford at 8 and had breakfast and coffee. We then met with the Transplant Doc, and our reverie was completely shattered in begger ways, as he was the harbinger of doom. Not his personality, but his information.
He told us all about what to expect, and I am not getting ready for a boxing match with Mike Tyson. I am getting ready for a back alley fight with Mike Tyson, and he has brass knuckles, a blowtorch, a sack of oranges, and a potted cactus. I have a nod, a wink, and a smile. What that means is ten times the dose of chemos I just went through, plus total body irradiation (TBI), with special attention to the testicles where the leukemia bastards like to hang and watch the action.
I've been burned, shot at, crashed, chemoed up, beaten up, and cracked up, and made it this far. I am healthy, with a good attitude. I like my chances.
We did not get the definitive schedule of events, but are working on it. The doctor is just coming off vacation, and his scheduling nurse is just heading for vacation, but that shouldn't matter. Where before the zero day was the day you were diagnosed, now it is the day I receive the transpant, the new Day Zero. So the schedule is going to go something like this -
Day -20 Around end of August - Test the donor further - bacterial and viral condition, physical condition. Lisa probably has to fly out for this.
Day -14 Around mid-Sept, start the chemo slam and TBI as an outpatient.
Day -7 I crawl into the hospital, to Unit E1, and I should be really sick. No white blood cells (and don't send me any yet), no reds, no platelets. They are trying to kill my bone marrow and every leukemia cell they can find.
Day -5 The donor starts getting Nupogen to promote blood products.
Day Zero Perform the apheresis where they remove the hematopoietic cells (stuff) from the donor blood and transplant it into my blood.
Day Zero-Day 21 or so Now things really get cooking. The new marrow has to accept my body as a host, since the new marrow is the immune system. Some degree of Host versus Graft (HVG) disease is common. This manifests in many ways, all bad. For instance, my skin may be rejected and I could end up in the burn unit! Or, my new marrow could decide that my liver looks foreign and shuts it down. I will be in the hospital and they will balance immune suppression with damage to my other parts, using drugs to keep me alive. I may be in morphine madness for 2 weeks. I get to leave the hospital when the new marrow has been accepted enough that they do not need to suppress the immune response, and my blood cell counts recover. One out of four die in this period, but that includes a lot of overall unhealthy people that cannot withstand the treatment.
After I leave the hospital I have to live near the hospital for 60-100+ days, really until they have host v. graft controlled and I am moderately healthy. Dana will have to stay with me. I then go home and I am weak and useless for another 6 months or more, but the good news is I can do dishes.
I have to say though, to this point I was thinking of future events in terms of past events, very human of me. I had minimized the severity and risks of the coming treatments and the doctor brought me back. The treatments can be brutal, and I am going to have to muster all my courage and will to smile through it again. The odds are daunting, so I have to keep in mind that I have changed the odds before and I will here too.
A couple of notes - Thanks for your thoughts and prayers, even from the Republicans down in the OC! I said to someone the other day, the big C doesn't care about religion or politics.
I walked the eight miles with the Team-in-Training team last Saturday, because it helped in deluding me that I was not about to enter the River Styx, pass through the gates, just to dance with the devil and spit in his eye. I got a nice calf cramp at mile 7 and gatoraded through it. Hey Martha, Mike told me how that photo went all the way to Maine and came back, cool, I took that photo. And as for Ooga men, I could use them all, and their sisters too. Check out the Ooga men at http://marthamillerart.blogspot.com/2008/08/power-of-visualization.html
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John:
ReplyDeleteYOW. You do have your work cut out for you. The Ooga Men and their sisters are on their way. (They are feisty and determined!!!)
Also many prayers for complete healing!
What put the Ape in Ape - ricots?
C - ourage.
You've got it!!!!!!
xox
M
WOW - It is a good thing that you are the toughest old bastard that I know....You, your sister and the rest of your family have a tough next few months ahead. Just remember your friends (I am not going to say anything political) even farther south in San Diego will be praying for you all.
ReplyDeleteI know you can do it!
Love and prayers from one old bitch, that did!!
MB
Thinking of you constantly. Will add Lisa to all the positive thoughts and prayers. Very impressed you were able to walk the eight miles last Saturday, you go John! Let's keep the warrior strong in all our visions as it sounds as if he is going to have to defend the temple against whole armies. We know he will. The John Warrior is amazingly strong. So wish we could all join the internal forces.
ReplyDeleteLove you guys. Chrissie
Have you been missing me? just returned from few day trip to Bethany Beach, Delaware--roadtrip w/Vinny, reunion w/my favorite cousins, looking for dolphins...but long time offline.
ReplyDeleteJust to show you what an important character you are to me, I am admitting this: I looked at your blog BEFORE the email notices of new book lists from the library. I know, I can't believe it myself.
But then for a minute I thought I might have to start my own blog, like you've been telling me to. I thought, I'll call it holycow I'm speechless, it will be very easy to read.
what a revoltin' development.
here's all I can come up with for today: I think we all (probably meaning me most of all) should stop letting you be our hero; but I don't think the time will ever come that I don't find you highly educational--and for one who is probably here to learn, great teachers ARE heroic, so it gets tricky.
seems to me like you at the edge of this next abyss are really doing what we should all be doing even on the good days--spending whatever time and energy available on who and what you love. I know it probably sounds pretty self-evident to many, but the imagination and courage behind taking the walk or camping out on the way back inspire me as much as the warrior training to float like a butterfly, wax on and wax off.
no matter how it all plays out, please keep writing. so many of us need your story as only you can tell it. and I greatly appreciate hearing the others connected to yours because they are all great reminders of how connected each of us really is to so much beyond this little screen (well mine's big, I have an apple but you get the point--and notice another example of my new-found control, I did not call myself a "mac-user"...
he's been quiet, why start anything.
boy for somebody who was sitting here speechless I sure talk a lot. habit I picked up from Flippper, down south.
keeping all your family in mind (you--I don't have to even say it; couldn't shake you off my radar if I tried.
Jennifer Unlimited said "Every time I try to close the door on reality it comes in through the windows" She also said " I try to take one day at a time, but sometimes several days attack me at once." I am building up regiments of Ooga Men to send your way for when the days start piling up. I will keep the WBC in reserve until they are called up. And when those days pile up and you can't make your way to the Blog Bar, I will encourage Pat and Mac and the others to fill in the void we all feel when we are missing your words. Love, hugs, prayers, good ju ju and armies of Ooga men
ReplyDeleteHey John,
ReplyDeletePraying for you. Glad to see you are keeping your sense of humor. Hope to see you back at Tec soon. I still owe you a golf game.
Dear Mr. Odd Changer,
ReplyDeleteYour recent update here is not exactly the uplifting news I was hoping to see as I logged on from my golf break out here on The Hood Canal. On the other hand, it is a definite move toward terrorizing those little bastards and removing them from wherever it is they’re taking refuge.
I think Mike Tyson doesn’t stand a chance in your upcoming alley foray. John Da Man, you can do this. Ready all those memories of the hardest holes and the greatest waves; paint them onto the inside of your forehead so they’re nice and close when you need them.
This view you give us into your life during this struggle is, in fact, what many of us hope we never have to see again, never have to experience, never have to revisit and certainly never have to be touched by in our own lives. Nevertheless, it gives us all a taste of what it really takes to have to fight to stay alive and live for another round. John, I don’t think I know another person whom I believe has a better chance at getting through this than you do. You are nothing less than amazing. You just simply blow my mind when it comes to your ability to muster up the incredible fortitude to take this shit on. And I have no question that you’ll do it again.
Hey, and who knows. You know, people go through a lot of drastic and severe changes when they undergo the treatment you’re about to take on. So just think, you might come out of all this as a (ready) Republican ! ! !
Be Da Man John.
Man