City of Hope

I hope this post finds everyone stuffed and jolly after their Christmas gatherings and joy. Just a quick update: I have indeed been scheduled for my 2nd opinion at City of Hope Medical Center in Los Angels for January 6th. Honestly I am simply looking for them to RE-instill confidence that I am indeed being lead down the proper medical path here at SCCA in Seattle. Anything else will be a welcomed bonus. Thank you all for the offers of help; mileage, support, lodging... You are all priceless.
Here's to a Joyous, Prosperous, and Healthy New Year filled only with Good things for us all !  To Life !!!
Cheers

Thank you & a Joyous Christmas

I want to thank everyone of you who offered up your miles. I am still literally reeling over the response, the calls, the text's, the emails...your kindness, your compassion....& the speed at which this is all happening. Currently I still have no date but likely within the week. City of Hope is still missing 2 crucial medical records from SCCA. Dear friends from ole S. Naknek Alaska days and my Best GF from middle/high school back in NY will split the mileage - one down to LA, the other the return to Seattle. I want to wish you all a most joyous, wondrous & simply Fab holiday. You have all touched my life & my soul in such a profound way. Please stay tuned. Thank you. And Merry Christmas to all !  xo

Frequent Flyer Miles anyone ?

Holiday Greeting all. This will hopefully be a quickie, I promise.

It is likely you have been following my current plight with Leukemia and my subsequent chemo's I endured this past summer. You will then also already know that the 2nd round of chemo severely burnt out my bone marrow environment preventing any return of marrow (marrow recovery gives birth to all blood cells). This 2nd round of chemo was FAR too aggressive and has since not only left me in the amazingly vulnerable & susceptible situation of lacking any bone marrow & absolutely NO production of blood....but we are also unable to move forward with mostly any further treatment against the Leukemia until my marrow and blood return to a more suitable protective level. At the utterly shocking & unacceptable point of being Day 121 post-chemo I am presently living blood transfusion to transfusion. We are at a medical stalemate....a "conundrum" so I've been told.

The above being said, I have been advised to seek a medical 2nd opinion...pretty much immediately. Unfortunately there are only maybe 20 places in the United States where they handle bone marrow transplants & issues related. I have a connection at City of Hope Medical Center in LA & after reviewing my medical records, they just called to tell me they would like me to fly to LA as soon as they can schedule me. They have promised it will definitely be before the new calendar year Jan 1 but much more likely within the next several days.

I am writing this to simply put it out there....

  

There is a very great need for any available Air Mileage on Frequent Flyer plans that may perhaps be expiring by the end of this year.....or any extra miles or unused ticket that you may loose....

If you would please consider donating them for this 2nd medical opinion, enabling me to get to City of Hope Medical Center in LA during a very flight-expensive and uber short-notice holiday craze time I would be ever so Profoundly Grateful. In truth I am utterly mortified to have to openly ask this....especially during Christmas time. But alas, it is because of the timing & expensive Christmas flight-prices that several friends suggested I put an e-mail inquiry out simply asking....

Unfortunately due to my medical condition I will require a Non-Stop (less vulnerable exposure) flight from Seattle to Burbank CA and return. I DO NOT have a date yet ! I am awaiting a phone call but may need to fly as STAT as tomorrow afternoon/evening (!!??) for a potential Fri Dec 19th appt. Better yet, if not that scenario then more likely fly Mon night Dec 22 for a Tues or Wed (x-mas) eve day appt - returning X-mas eve.

Again, I never EVER thought I would be in this situation EVER... ! But here I am. I am continually stunned, left speechless, by all the time and work my caregivers have given me....and by all the unbelievable moral and long distance support you guys have propped me up on. Bloody Hell, it does indeed take a Village !! Mortified as I am, grateful as I am...there is indeed an urgent need. Please Please PLEEZE understand and forgive me if I don't reply back to you....time is of the essence & this is just too crazy of timing. I will no doubt have much treatment issues to contemplate. Just hope that all the stars are aligned.

OMG this is a crazy way to sign off, especially after inquiring about the above mileage but... I TRULY wish everyone Holiday Joy. May yours be touched by simply Fantastic treats, Good Health, abundant joy, and sheer ole' fashion belly laughter. Again, I thank you from my heart.

To Life !

Cheers.

Kristina  -  xo

Stagnant...& overdue

I owe a big apology. Truly there has not been much to write. Simply because we are still holding our breath & waiting with now mild anticipation for ANY bone marrow to return... To start producing blood again. At Day 112.....Still waiting. I now feel akin to a sort of vampire. They pump new blood from other people into me, I use it up in approximately 5-7 days, then I need more new platelets and blood. Ah, the malicious cycle. I still have no immune system. And am defenseless against everything. I continue to take a number of prophylactic med's - several that are criminally expensive. And I'm tired of just waiting. Of seeing the 4 walls of my own home, or of being up at the clinic. I'm tired of this snails pace progress - forward as it may look - being measured by fractional digits that barely move.... Or teasingly, deceptively bump-up...slightly...only to slightly fall back again.
Please understand I'm not writing this with any angst, fear or outright rage. It's far closer to the opposite of simple stagnation, apathy, boredom, whatever.... In sailor's terms; I'm in the doldrums with this progress.... Argh is appropriate. I'm exasperated. And I just don't know what to say anymore.
For the moment (at least this moment) Transplant is off the table. Other than setting up for my second DLI possibly this week, I had the prerequisite bone marrow biopsy last Wed. The Good preliminary news is that there is "no residual disease detected". The final 2 reports should be available shortly. Perhaps I'm being a bit too cocky ? I knew in my soul there wouldn't be any residual Leukemia. Crap, they burned the Hell out of my marrow environment. It's not growing or sustaining anything now....as it should be. I was in remission with the 1st round of chemo. Why would I not be now ???Could there possibly be any residual disease cruelly lurking, slinking around in there somewhere.....Still ? ? ?
So please except my apology. For my tardiness, for my seemly contempt possibly cavalier perspective, for my lack of communication. In truth I am actually doing Freakishly well. Go figure. And...as my caregivers will agree am yes upbeat, laughing, living, and certainly making plans for the future. Even under the above lousy circumstances. You better Flippin' believe I am !!
Thanks so much for bearing with me dear friends, peep's, my homies, my village. True, it hasn't been easy. But please DO stay tuned.
To Life !