Checked into E1 yesterday at 2:00 pm, and I have a pretty spacious single, E122, with antechamber Hepa filtering and scrub station. All visitors have to scrub and wear a gown and paper mask. You'd think you were in Beijing! We started the 'Fall of Love' party right away. I had a little foursome going with Zofran, Compazine, and Scopolamine. 'When they were.....Dancin' and singin' and movin' to the groovin. And just when it hit me, somebody turned around and shouted Play that funky music white boy!'
Everything was groovy, man, with a big dose (4000=milligrams I think) of VP16. This stuff was lights out - as they are dripping it in, I am taking a dive, feeling my blood pressure just plummet. The canvas is approaching my face, but my BP bottoms out at something like 90 over 60. I reel around the ring for the four hours of IV drip of VP16, but I am back in the game.
I feel OK this morning, just came back from a walk with Dana, Lisa, and Manuel. They have to wear gowns and masks in this room, so it is better to around, except I have to pee every 30 minutes. The docs came in this morning and said about half of patients get some level of burn from VP16, so it wasn't just radiation to fear. 50/50, good odds in Vegas!
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John Da Man,
ReplyDeleteI wish you all the luck there is to have as you enter this next round.
It was good to talk with you last night. Great to hear that your spirits are up and that you're giving it a good fight.
Hooah ! ! !
Mac
I had a conversation with God this morning. Reminded her what a good man you are. Asked that she hold you in the palm of her hand today and tomorrow. You might feel a little lightheaded and footloose but she knows what she's doing.
ReplyDeleteI put in a word for Lisa too.
So good to talk with you both. Sharpen the arrows!
Love you,
Chrissie
Holy wow stud man. I cannot believe you are up and walking around!
ReplyDeleteHooah! You are da man!
Hi Leslie,
ReplyDeleteGreetings from Apheresis Alley. Actually, I’ve just been released and now have my two arms free. I’m wishing you had been there while I was tethered to the Leech-Omatic that spins and separates my blood. My blood is your blood, and will now be John’s blood. Tomorrow he gets the stem cells, so I am making John an honorary Fiore twin - I know you won’t mind. He already has our blood type, now he gets my few allergies (yours too?). Supposedly absorbable Vicryl stitches, sulfa, maybe mango. Guess that’s not too bad.
It has been an odd vacation - fun in its way, but disconcerting, too. Having fourteen vials of blood taken, answering probing questions, taking beautiful walks in San Luis Obispo, hiking in Yosemite, eating dim sum in San Fran's Chinatown, sipping wine in Napa, eating lunch in a Bodega Bay cafe (remember “The Birds”?). Seven more vials of blood, daily injections of Neupogen, headaches, bone aches, more vials of blood, and worrying about what sort of weird viruses I could give John. I was very relieved to hear that I tested negative for all sorts of things, considering all the foreign travel. Apparently it’s quite rare that both of us would have tested negative for CMV - cytomegalovirus - since over 80% of the population have had it without even knowing. It would have been hard for the doctors to balance John’s immunologically-compromised system and fight host-graft problems while also fighting such a virus from me.
It’s been great to see John and Dana after so long. John looks too well to be so ill. After the radiation, he looked glowing, but fine. After the chemo, he still looks well. I’ve been a witness to the superhero pants - very cool. But John is the real superhero. I don’t want to be the “cure” that puts him down, makes him (more) ill. I’ve willed my white blood cells to be a good host, treat our brother well.
To John: 200 ccs of stem cells coming your way. Use them well.
Love, Lisa
Lisa,
ReplyDeleteYou are Da Woman ! ! !
We're all (out here in blogoland) so thankful for your participation in this venture and for the truly special gift you have offered your brother- and our dear friend.
I, for one (and I believe I speak for many), am anxious to see John kick some major ass here as he breaks the odds and shows the medical community what a real degree of resolve from a first class fighter can accomplish.
Your post of geographies brought back great memories for me. Bodega Bay was one of the first places I remember visiting when I moved to Northern California 30 years ago (wow!).
John, Day Zero is upon us. We count on you to show us why Day Zero is actually Day One.
Hooah, Hooah, Hooah ! ! !
Mac
wow
ReplyDeletefeel honored to know all three of you twins and I'm sure there won't be (as we say in RI) any bad blood between you--
I count Leslie in the hero-hood of the traveling pants club, too...not easy to keep the home fries burning while part of your dna goes whirling dervish on the opposite coast
not to mention there's your brother is in the Fall of Love having his own pee-in without any hair to wear a flower in.
give peas a chance, man, never trust anybody over 90, I would say rename the holycow thing steal this blog but not sure who would want us
AND MAC
ReplyDeletespeaking about fighters, you cheesedog, we are now trying to post simultaneously but NO you were that split second ahead of me and I had to type the invisible letters again after your comment elbowed mine out of the way
this must be how either Lisa or Leslie feels, I don't know who came first
my third code word of the day is CNEXT, I hope this doesn't turn out to be prophetic
HA you leaned down to pour ho-spice on the kitty food, I leapfrogged over, I made it!
Lisa's army of healthy wholesome stem cells are ready to take John back and make him an honorary triplet...revitalized, rejuvenated, and renewed! Go Girl power.. battling shoulder to shoulder with da stud man in the greatest fight yet, culminating in total acceptance and victory!
ReplyDeleteLoving sister Lisa - Thank you and bless you for your selfless giving.
Lisa has your back John. Keep up the fight and let your warrior sister assist you in kicking leukemia's ass. We look forward to the chronicles of the battle and your ultimate victory.
John,
ReplyDeleteThinking of you more today than usual on Day Zero.
It is good to hear that you are still up walking around defiant as always to the man.
Ali, Frasier, Foreman...none would stand a chance with you. Your courage and strength is inspiring to anyone around you. Your positive outlook, regardless of the odds, is infectious.
Thank you Lisa for the sacrifice and give 'em hell John. I wish you all the good juju in the world and Lisa's cells on their way to the rescue.
Great job Lisa, you are truly are a wonderful sister. I guess the ball is in John's court now and I know how good he is at handling the ball. I can feel that John is gaining the upper hand in this fight. Knock him out like you used to do with your "rock em sock robots".
ReplyDeleteBill