Bruce is Back !

Until now there had been absolutely nothing new to report. I apologize for the lack of communication, the lack of information, however it was truly the same ole same ole - excruciating holding my breath & waiting.....
Far more infuriating and discouraging than one can ever ever imagine.

There was very brief chatter of a possible 3rd DLI knocked around. But after a pre-DLI Bone Marrow Aspiration, last week we received desperately needed encouraging results; "NO Residual Disease Present"! My cellularity is also up from 20% to 30%, (meaning cells are there...and they "seem" to be working ! ). And, all the marrow cells counted are indeed all my donor Bruce's karyotype (his DNA, his cells). NONE are mine. THIS is a Fantastic thing !! It is now apparent that Bruce's stem cells/my bone marrow are indeed slowly recovering from the 2nd burned-out round of chemo (in August) & are now growing to maturity the blood cells needed to sustain life.

In layman's terms: when my marrow & blood counts should be recovering at a normal rabbit's hip-hopping pace, my marrow & cells have now progressed from a snails pace to recovering at a Tortoise pace. This is Huge - considering my odd circumstances. There is still much more to recover. For instance there seems to be fledgling issues with my neutrophil counts (directly relating to my immune system ability).  But folks...THIS is an overall improvement on a small grand scale ! Therefore, per Elaine atop Little Mt Si the other day.....

     Bruce is Back  ! ! ! !

Not only were the above results encouraging, but it seems that within the past week or two my white blood cell counts have been slowly but steadily increasing, and I have been holding both my red blood and Platelet transfusions longer that I had previously. This is indeed an indication that something is mending and moving forward with a tad more direction than previously.
Dare I say there is even talk of potentially returning to very part-time work eventually down the pipeline. Omgosh.

I also want to shout out, cry out, a profound thank you to every single one of you who donated to my desperately needed COBRA Medical insurance fund through the Go Fund Me page that was started. You know who you are my Lovely peeps ! And embrace you.

VERY shortly I will be sending out my annual group "ask" letter for the Leukemia & Lymphoma Cup Regatta. (those that just gave to my Go Fund Me page please feel free to disregard this 2015 Cup ask ). This year I have been appointed one of LLS's two Honored Skippers. Please support our fight against blood & other cancers, as well as the actual funding that goes directly to patients like me. They fund research, clinical trials, new drug treatments, including drugs used in other types of cancer treatments.This is not only the second time I've endured Leukemia, this is also the second time the LLS organization has helped me out directly by paying for the 1st part of my COBRA medical premiums with their LLS co-pay grant. Please enter the below into your browser to go to my LLS page at:

                   http://www.leukemiacup.org/pages/wa/sea15/KSouthard

Let's all collectively fight cancer together. And again I want to thank every one of you personally... for your support, for your kindness, for your encouraging words. xo
To Life. Live it Boldly !!!

Waiting & seeing...

A much long overdue update. As usual, of course. Though not a lot has transpired worthy of a post honestly. I am now 3 weeks into my 2nd DLI (Donor Lymphocyte Infusion) of Bruce's killer T-cells. As with a Transplant of bone marrow or stem cells (and dumbing it down considerably)...if the transplant does not fail shortly thereafter there is then the reasonably high likelihood the Leukemia has been eradicated by the new stem cells and "all one must deal with then" is the countless and horrid side-effects of the transplant itself; GvHD, all the endless medications, the recovery, etc... NOT a small manageable feat to say the least !! However with a DLI it is far more ambiguous. There is no real way to say it is truly working or not working against the Leukemia effect. It is largely a tedious wait & see game as blood levels return to normal, start producing on their own...or whether the leukemia will return & present itself again. Honestly both are truly a crap shot but DLI is just ever a little bit more so...
Currently I am doing remarkably well for no to little bone marrow production per se. I have been straddling that Neutropenic level of 0.50 (also known as 500) and just above it, and am still dependent on my daytime-vampire blood transfusions (now every 7 to 12 days). In this winter of horrible Flu & Measles outbreaks I have been blessed FAR beyond just sheer Luck....and I KNOW it !!  Largely no doubt due to all the criminally expensive prophylactic med's I'm taking. And considering how neutropenic and vulnerable I still am ! My Neutrophils have once been as high as 0.73, but I then slip back down again zig-zagging back & forth at that neutropenia level. However I've managed to stay just above the 0.50 point for a few of weeks now. So Yes! there is indeed a slow steady movement forward... Improvement. Yay !
We are presently in a 6-8 week waiting period post this most recent DLI. We are waiting to see if and how much Graft vs Host Disease (GvHD) will present. And how we will treat the GvHD considering my already insufficient immune system. On the other side of the coin, what if GvHD does not present ? Does this mean the DLI against the Leukemia is not working ??? As my Doc say's: "be very very careful what you wish for"....
Two recent devoplements:
 ~ You all know just how much sailing is a part of my life & how I am typically very involved in the Leukemia & Lymphoma Society's "Seattle Leukemia Cup Regatta". This year they have chosen ME (!!) to represent them as one of their 2 "Honored Skippers"!!  It is indeed an honor to stand for Leukemia Patients everywhere & represent Seattle's effort to fight the cause ! I am very much humbled.There will be press junket & informational materials available publically so pls keep an eye out for my smiling uber-short haired face = )
                   http://www.leukemiacup.org/wa/localchapter/patient
 ~ At the same time, the LLS Grant I was awarded in August which has been paying my Cobra medical insurance will run out mid-March. This will bring much added stress as we struggle to figure out ways to financially cover this expense while still on Disability. It is Imperative that my criminally expensive medical insurance not lapse so I may continue treatment & then crucial monitoring. Unfortunately I will need to stay with the very same insurance as it covers everything transplant-related. We are considering the potential of a "Go Fund Me" page or the like, but everytime I read the seemingly much more dire and needier campaigns on these pages my stomach just simply turns. If anyone has any other presentable idea's or connections please don't hesitate to speak up.
I so hope that everyone's Valentines Day brought sun, warmth, joy, and perhaps the tender Love we all deserve - whether attached to another or not. Mind did  = )  Here's endless Love to all my peeps, to my Village.
To Life. Live it Boldly !
K -

COH outcome

Hi All. Back from City of Hope (COH) in L.A. last Thurs but only for 24 hrs. Was off again for a desperately needed weekend away (my first & physician approved). Returned home late Sunday night to prep for Monday's SCCA appt....and exhausted since. Sorry for the delay...again.
My City of Hope 2nd opinion was everything I hoped it would be. As expected they did indeed offer their version of a mini/midi Transplant. COH is more concerned with getting Stem Cells back on board again. However, they did indeed agree that a slightly larger dose of DLI would be another appropriate and more "benign" treatment option. Dr Nakamura was highly knowledgeable, well published with numerous hematology/MDS/stem cell transplant/GvHD papers, was soft spoken, and ultimately agreed that I was indeed a rather unusual case with a 7 yr relapse, no stem cell recovery post-chemo, no immune system, and surviving on weekly blood transfusions, yet doing surprisingly well. Hell, Fabulously well !! He likewise presented my case to COH's tumor board/case conference where difficult cases/patients care are discussed. Per his phone call on Monday they too agreed with his consult. And THIS is exactly what I was seeking; after numerous and significant hiccups here, to RE-instill the confidence back in my care at SCCA.
I was also blessed enough to be hosted by a fellow Transplant patient almost 2 years out whom sailed with us on Selah during last years Seattle Leukemia Cup race. Stephen & Erin were lovely and not only offered their home as base while in L.A. but Stephen likewise accompanied me to & participated in my appointment with Dr. Nakamura. This in itself was priceless support, especially from someone who has literally been there done that. Erin, a pharmacist, was likewise instrumental in seeking information about potential drug treatments. I owe both Stephen and Erin many many thanks for opening up both their hearts and their home to me. Along with them I likewise owe many thanks to those that offered to help with mileage to L.A. More specifically to old dear friends Beth & David, bless their souls. Huge bear hugs & kisses to both of these couples.
Moving forward... for the very first time my WBC crested to a single digit: 1.01 (yay !!) and more importantly my neutrophils, so desperately lagging, finally & consistently stayed above the 0.50 level. On Monday they were 0.63 !  Not only the highest they've been, but the largest increase in one shot. Perhaps "something good comes this way"??  Because of this Dr. Laura said they would like to do another DLI at a slightly higher (and more complicated) dose, before any chance of the return of Leukemia blast cells. To ensure my marrow is still in Remission I now have a BMA scheduled with the DLI to follow next Wednesday. This DLI will be a longer procedure after infusing Bruce's thawed Lymphocytes including several hours of close monitoring due to a cryopreservation additive. It is expected that this DLI will give Bruce's cells the boost needed to produce & protect my/his immune system from the return of the cancer...the much sought after "Graft vs Leukemia" effect.
Keep fingers & toes crossed for this needed forward momentum. Here's to DLI #2...

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 !