Hoshi Cancer - It's WORKING!!!
Trip Start
Unknown
1
6
Trip End
Ongoing
Seattle, Washington
Saturday, March 8, 2008
March 8th-
Chemo weeks just plain suck!! Thirteen radiation treatments and one more Chemo to go, we can almost see the edge of the woods...
Wednesday we had appointment with the ENT chief at UW, treatment is working!!! Tumor on base of tongue is no longer visible, tissue looks symmetrical and smooth. Doctor could not feel tumor in lymph anymore. Excellent news helping to make this horrific treatment a little more tolerable. Despite the results looking great, there will be no change in the treatment plan. They say the goal is not to get rid of the tumors, but to kill every last cancer cell in his body. Yes our hearts are jubilant, our minds and bodies are too tired (and sick in Mark's case) to join in the celebration just yet. He is experiencing all kinds of awful side effects from both Chemo and Radiation.
A personal favor to ask, our dear friend Anne is participating in a pretty cool event and I'd like to ask y'all to sponsor her (I've also asked her to raise her goal to $1000 because I believe we collectively can help her reach it). The event is the American Cancer Society's Relay for Life where people will be walking taking turns doing laps around the UW track in the stadium all night long (to represent the fact that cancer never sleeps). She is walking on the team for Abused Deaf Women's Advocacy Services. Please click here to visit her page and make a donation.
Mark and I would have liked to participate, but unfortunately the event conflicts with another event that is dear to our hearts. Over the past several years, Mark has been involved in leading the children's program for a camp designed for Deaf children and their parents. The camp offers recreational and artistic programs for the children while their parents are able to network and attend workshops learning to become better advocates for their children. We are going to do everything within our power to be able to participate again this year, so we'll be walking with you in spirit Anne.
Update Thursday, March 13, 2008:
Phew, this Chemo has been much more difficult than the first. After several days of uncontrollable nausea and inability to keep any food, liquid, or meds down, Mark was dehydrated, lost 5 lbs and admitted to the hospital Monday. Over the past 4 days we have been hydrating like crazy through IV and making daily changes to his meds to figure out a successful formula for getting his nausea and vomiting under control.
It feels like we're getting close, as he seems to be feeling much better and able to keep food down most of the time. Even went for a midnight stroll one night. He was all the envy of the hospital sporting the Plumeria lei our friends brought back from Hawaii.
Once we're comfortable we've found the right combination, the next step will be converting the plan to something we can implement at home without the IV administered meds. He won't be discharged until we are successful in getting the full 6 cans of nutrition and enough fluids through his PEG tube to comfortably stay in his stomach. Mark's doctor has also approved bi-weekly outpatient IV fluids to avoid dehydration, so we're hoping we'll be in pretty good shape once we get out of here. We're pretty well covered on the caretaking end of things. We planned to have a caretaker training at Pension Del Plecchio involving a few key folks that have been and will be helping us get through the remainder of this. The group instead gathered in Mark's hospital room making the place feel a bit more festive. Remaining count after tomorrow's treatment - only 8 more radiation treatments and 1 more chemo.
Comments
GREAT NEWS
Mark Great news. I am very happy your Doc's are sticking to there plan and not stopping early although I am sure you would love to stop. Also Great to have you suggest the Relay for life! I have been donating in the name of My Mom for years and made the donation at your link this year. Also great to hear of your involvement with the kids! It was somewhat funny to watch the video of your first chemo dose and hear in the background someone yelling at mark and then saying 'man he is deaf' I suspect another of your deaf friends who needs sensitivity training! As I say when people laugh at my spelling... 'Oh I suppose you laugh at people who fall out of their wheel chair also' We get what we get... What is magical is that you and Kristy are making Lemonade... By inspiring us all with this blog!
Thank you
Tom
Light
thinking about you and keeping you in the light! warm healing wishes your way. ~julia
YES!
Right on! I am so happy to hear things are going as planned. Well, at least what the Doctors planned - not exactly how you guys planned to start 2008. Kristy, thank you so much for your recent call. I loved talking with you. And I can't wait till we can all be together again - healthy! - in person. I love you guys! HAPPY HAPPY THOUGHT THOUGHTS! Bill, Lilly & Jack send their love too.
Lori
strong, steadfast, yay for good news!
I'm so glad to hear it's working, so sorry it's been so awful. Kristy, as you said, the light can be seen through the trees. Soon, the clearing, a breeze, and easier times. XOXOXO
Spring's on the way
YEA!!! The world is spinning a little more evenly with this great news! Hang on and get through this last horrible bit. Spring is coming-new strength! All of us from far away are holding you all clearly in our hearts. big big love to you...XOX Karee.
Friends
Mark & Kristy, I loved the video of all your family surrounding you in the hospital room!!! 'For without words, in friendship, all thoughts, all desires, all expectations are born and shared, with joy that is unacclaimed.' Mark your friends out here at thinking about you, talking about you (only good stuff of course, smile) and sending you warm, healing, comforting, restful thoughts. You are half way up the mountain, your body hurts, the breathing is labored, but woaaaaaa the view when you get there!!!! big hugs, jm
ding dong that bitch is dead!
picture the scene from the Wizard od Oz where they wake up in a field of red poppies... LOOK! we can see the Emerald City in the distance! now the optimistic voices sing:
You're out of the woods
You're out of the dark
You're out of the night
Step into the sun, step into the light
Keep straight ahead
For the most glorious place
On the Face of the Earth
Or the sky
Hold onto your breath
Hold onto your heart
Hold onto your hope
March up to the gate
And bid it open
or MAYBE...
a song for the chemo drugs/doctors/radiation/tarceva (which dropped on that bitch of a cancer like Dorothy's house dropped on the wicked witch of the East):
(Munchkin 1)
We thank you very sweetly for doing it so neatly
(Munchkin 2)
You've killed it so completely
That we thank you very sweetly
(Glinda)
Let the joyous news be spread
The wicked, old bitch at last is dead
(Munchkins)
Ding-dong the bitch is dead
Which old bitch? The cancer bitch
Ding-dong the wicked bitch is dead
Wake up you sleepyhead
Rub your eyes, get out of bed
Wake up the wicked bitch is dead
It's gone where the goblins go
Below - below - below
Yo-ho, let's open up and sing and ring the bells out
Ding Dong' the merry-oh, sing it high, sing it low
Let them know the Wicked Bitch is dead
Love you lots
The Good Witches of Ferndale
hello from San Francisco!
Hi Mark and Kristy! YOu two are one of the strongest couples I know. Hang in there! NOw don't pull another stunt like this again just to reel us into Seattle. Smiles.
Much Love,
Rolo, AKA Rossana
so happy!
I'm so happy to hear that the treatment is working! I've been thinking of both of you daily and sending lots of love and healing energy. Hang in there, my friends, and we'll be back to boogeying together in no time at all. In love and light, Liz
you've come sooooooo far
I had goosebumps when I read that you couldn't feel the tumor...yes! yes! yes! And your photos...I don't know how you do it but you both sure shine through in your pictures (ie.together on the hospital bed). Your character, your love and your strength just come right through the screen.This will be behind you soon my dears.
Glad :0)
Kristy and Mark,
I'm so glad to hear the encouraging report! Thanks for keeping everyone up to date with Mark's progress. Todd, Kalei and I are sending our love and support to you both!
Much Love,
Jovelyn
Two Strong willed people
I am so happy to hear about Mark's progress. I can't imagine what you are going through. I told Tiff when all is well she needs to make avisit to Vashon with the two babies and her partner to visit you guys. I think about you guys on a daily basis. Praying for you daily! Keep up the great work and what a marvelous support team you have! It's a blessing to see how people can work together.
Love you both
Nancy
Hey! (Candyman)
'...won't u tell everybody u meet, the markoman's back in town!!...'
Hey! much love and intense positive vibes as u guys continue on ur journey!! Grover
doin' my happy dance!
oh, man! your last entry was good to read - I'm so thrilled that this hell you're going thru is working. I love you guys... thank you, again, for keeping me in the loop. Looking forward to hugging you both tightly, one day soon... sending love, till then. Salwa
More Love and Light
hi loves
I've posted a couple since last time but they dont seem to have showed up on here - weird ?
Find it little bit strange to try and post her regularly, cos - whats to say yknow ? People dont wanna hear all my news.. its yours they want :-) So it feels like sending u the same ole msg !!
But even though I dont post often, you be everyday in my thoughts and prayers.
Hoping to see you april 13/14 depending how you both are...
Smooches
xxx
Oh and Of course
how shall i put it....
that film..... up there with the best presents i ever had in my whole life... cant begin to tell yu what it means to me...
no words to express the gratitude i feel for that
great work u both took time out to do...
hope u filmed the others too, at the show or outside ?
if not, well there's always the next time that wheel comes round :-)
when i signed those songs, some of them {eg BOX} was right for you and at you ! and u just hav to watch it to know how i am smiling and looking at you right now...or any other time basically !
NFA !
Thanks for letting me visit !
Hi loves,
Sorry it took so long to get back to you. The trip knocked me out and then the huge workload since then finished me off !
I would love to have found a way to see you on the last Saturday, but as it was, I had to fly in from portland in order to make the plane - ouch says wallet !
It was really great to see you and I hope your recovery continues in this way and will be sending you love and light every day to help that happen !
Smooches !
xxx