August...

A Lovely Summer is winding down. In flows a rather windy, chilly but a welcomed Seattle rainy August afternoon. There should be an update posted as there has been news. Summer blew in with shockingly 2 hospitalizations, a lot of activity, a long heat wave, a pleasant once in a lifetime opportunity, some gentle progress and a visit from my donor Bruce. Recently I was in the very beginning stages with my new Heme/Onc Physician contemplating strategy for a possible return to part-time-disability work when my disability insurance company wrongfully decided to terminate my benefits due to a minor mistake in my medical records. Ironically it was coupled with information taken completely out of context by the insurance company medical staff and their severe lack of crucial and very basic medical knowledge. My benefits have indeed just been reinstated (...with no apology). But while fighting for my reinstatement, my doctor made a rather grim discovery in my DNA chromosomal results from 2 previous Bone Marrow Aspiration (BMA) test results. The Leukemia I had 8 years ago is chromosomally different than the Leukemia I had last Spring/Summer 2014. There is a significant change in the cells. And they are clueless how this could happen, only guessing it is a "parent clone cell that mutated". However, this being said, there is nothing that will change in my current management moving forward. At least for the time being.

I have progressed. Very minimally. They believe there is damage to the Stroma - the bone marrow environment - but are not sure why. My blood levels - 13 months out - have NOT returned to anywhere near normal. Not good. My last transfusions were June 5th. I presently appear to be holding my own at the moment (great)...but just. I am fatigued far more now than when I receive transfusions primarily due to the lack of robust cell recovery. The new interpretation is now: I have "Not achieved full Remission". There is simply not enough production of stem cells...nor blood cells to even determine if the Leukemia is gone or not. Nor either if I now have MDS (Myelodysplasia) again, or Aplastic Anemia. I was informed current survival rates in this situation "are 8 months". I am now 13 months out. Yay ! Really. However I was also just told I have "a poor prognosis"....

But no one has a crystal ball, Right ?  Hell NO !

So, a cruel reality check... Just when I thought we were slowly moving forward.  I have always thought all this Leukemia bullshit was unbelievably (and unfairly) scary, surreal, a Test.....and rather painfully inconvenient. But equally I thought that I was, am Truly Invincible. Yes the above sounds grim. And as "new" new's to me...it is. This I assure you. But I am generally doing okay. Probably far better than most under the same circumstances. I am a Warrior. Fer sure! And still strive to live my normal life with a few frustrating challenges. I still have a long way to recovery. We will continue to look for a cure. We will continue to explore returning to limited part-time work. And we will still continue to hold our breath...as long as I can. Trusting the Leukemia does not return a 3rd effin' time. Therefore,

Carry on Grasshopper....

I hope you are all Well, and truly enjoying our beautiful waning days of Summer. To Life.
Live it Boldly. Always.
K -

Leukemia Cup Regatta

I SAILED !!

My UW Med Center Doc's - aware of the significance of being this years Leukemia & Lymphoma Society's appointed "Honored Skipper" with a speech scheduled for this well-known event - graciously and gladly did everything in their power to get me out of the Hospital in time to make it on Race day - Saturday June 6th. Every med-team was involved in this endeavor, and I profoundly thank them ALL for being sooo utterly Awesome ! We did it !!!  YAAAAYY !!

It was somewhat ironic and bittersweet that late Friday afternoon I wrote my Regatta speech from my hospital bed. Thurs afternoon they had pulled my Hickman chest-line out as it was now definitely compromised, having been hospitalized twice in past 3 weeks because of it. After two unsuccessful and truly painful attempts to insert a new PICC line in my upper left arm, we had to break sterile procedure, bring in more equipment and begin all over again on the other arm. Having no other option we had to switch to the right side. Definitely not the preferred choice as I am right-hand dominate. I can't convey to you just how utterly miserable this whole experience was... Just for a simple PICC line !!

At 7:30 pm Friday evening I finally rolled out of the hospital homeward bound ! The following morning I got my Piratey arse down to the Marina. Talk about cutting it close. Whew !!!!  I was simply thrilled to be sailing with Ken & Danette on their ultra-sleek sailboat, a Hanse 455 ironically and rather appropriately named "Sick Day" (...as in "you never saw me") and meet our simply Rad crew !! What a stunningly GORGEOUS day it was !! I'd like to beleive my speech went off with only a stumble or two, and perhaps a few teary gulps as I spoke. Several people stopped me after to hug, encourage, share their journeys....all truly welcome. = ) But I truly believe the point was brought home why we were all there and how truly important it is to keep funding LLS, keep the fight going... Thank you to all whom donated. I am proof your donations make a profound difference. For real !!

The day was Simply Spectacular !!! Fair winds blew as we sliced thru the water at 9.1 knots, powered only by the breeze, skillful sail trim & helmsmanship (thank you Ken & Dave). What a GLORIOOUS way to get out of the hospital. Yes, that is me, smack in the middle. Can you tell ???

And so back to the present. I still need an IV central line. I am still blood dependent. Shockingly, I required 3 different bags of red blood & 1 of platelets while in hospital. I am likewise self administering IV antibiotics at home for the next 2 weeks post-discharge. Being right-handed this presents a bit of a problem as I live alone, am stupid with my left hand & will have a degree of difficulty flushing the line daily & keeping this PICC thing dry while showering. I was told I would likely have another Hickman implanted, as my new Hem/Onc told said a further Transplant is not necessarily off the table yet (HUH !!!!). She believes I am having post chemo recovery issues producing accepted Normal levels of stem cells and blood cell production because the actual bone marrow environment itself (the Stroma) has been significantly damaged. I question (and SCCA has aknowledged the track record...) the last dose of toxic G-CLAM chemo. We are also pursuing "research" level gnome mutation sequencing due to my odd relapse. However she is willing to wait a little bit longer to see what happens with my blood production. I am still immune compromised and have very low blood counts.We have not even approached discussing transplant logistic yet. So let's just keep our fingers crossed and I'm holding my breath my/Bruce's Good cells will continue the recovery process properly.....
To Life ! Live it Boldly !!!
K -

2nd ER Visit, REALLY ??

Yes. Really !!  Yet another ER visit late last night has unfortunately led to me being admitted...Again...to UW Medical Center. Same ole same ole. Headache, fevers, punky feeling. This time I didn't wait for the Rigors to appear. I wised-up & got my butt down to the ER with Kate's help. Same floor, same Montlake Cut view. What the hell ???

Word just back that the blood cultures they took last night are growing out another rod gram-negative blood infection. Huh ? How can that be ? Did the one from 2 weeks ago just linger and hide. Neutrophil counts dropped. In fact all blood counts dropped since the last hospital discharge. That's been a bit disappointing too. New SCCA HemOnc on board now. Am pleased with this change so far. Med-team here at hospital is again considering pulling my Hickman chest line out, but is holding out hope we can still treat infection without going that far as I am still blood transfusion dependent.

Making matters even more pressing.....the Leukemia Cup Regatta is on Saturday. Not only have I been chosen as one of 2 Honored Skippers this year for this very important event, part of a national campaign for the Leukemia & Lymphoma Society, but I am scheduled to speak during the Skippers meeting...rally the crews. And....all of you whom have supported me with donating funds to this fantastic org....  well crap, I don't want to let you down. What incredibly lousy timing !!! However, my med team is aware of this and has promised me they will try to bust me outta here in time. Cross fingers folks !!

Out !!

I'm out ! Free to roam. 3 days in the hospital is quite enough !! There was no further rod infection growth 24 hrs after beginning the 2nd IV antibiotic. No further high fevers, nor rigors....and in light of now proactively getting patients out of hospital Asap, thereby avoiding any further exposure to other opportunistic infections, i.e. MRSA, they gladly discharged me. I happily accepted. I am free.... Whew !!

2 am visit to ER

Yep, Monday night/early Tuesday morn I had a surprising 2 am visit to the UW emergency room which evolved into a now several day stay. I left SCCA Monday morning with a sudden and unusually excruciating headache. I was actually a bit reluctant to drive home. When I did get home I napped (...not a napper) for a surprising 3 hours and felt much better. But as the evening wore on the headache returned. By 1:30 am I had been shaking uncontrollably with rigors for about an hour and 1/2 - literally unable to get out of bed, even for my phone. I finally managed to get a thermometer, resulting in a 102.0 fever. Which quickly, shockingly, turned into 103.0 degrees only 10 min later. No denying it, something was definitely wrong. Sure enough UW Med Center advised me to get into the ER immediately. A neighbor thankfully drove me.

I honestly though I was WELL beyond this stage. With talks of me potentially going back to work (super part-time), even with my low neutrophil and platelet counts and lack of robust immune protection, I truly thought the whole hospital thang was well behind me. Imagine my utter shock and disappointment. Apparently I have somehow acquired a rod gram-negative bacterial infection in my blood for which they are still investigating if it's related to my central chest line (hickman) still placed in my chest. It seems to be far more serious than I thought. The physicians here placed me on one IV antibiotic, but have since switched me to another slightly stronger more broad spectrum one after 2 more in-patient episodes of uncontrolled rigors. What an exhausting experience. Thankfully I'm doing far better. However they need to keep me a couple more days to make sure the meds are indeed working and that the following blood cultures taken do not grow out anything further (there had been talk of possible meningitis too..).

Talk about an utterly and truly Rude awakening. Just being back here brings back rather unpleasant memories. The smells in the sanitized bathrooms, the food on the menu I know oh soo well (yuck!), the sounds in the hallway, vitals every 4 hours, and the lights blinking at night. Not necessarily frightening, but certainly unpleasant unnerving reminders...

I'm a bit tired, but in far better spirits. And totally welcome any hospital hallway antics, preferably involving soft-Frisbees ....  = )

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 ! 

Thankful

Blood draw today, appropriately Thanksgiving Day with results to be thankful for. Slowly the numbers are creeping up. Whites 0.69 & Neutrophils 0.40. The highest they've been. And this is a good thing! It also seems I've been holding both the platelet transfusions and the red blood transfusions maybe a day or two longer than I previously have. In fact, a platelet transfusion and a red blood transfusion we planned for tomorrow could probably wait until Sunday. However for safety reasons we will schedule both for Saturday now. Wow. Although in extremely minute increments, I now feel that there is indeed a slow progression forward. For this...and so very much more...I am both grateful and thankful. I reserve a very special soft fuzzy place in my heart for Bruce my donor....and for ALL my priceless caregivers that nurture and support me. XO
I pray that all of you have equally precious things that you too are thankful for on this day = )
To Life.
Cheers.

Today is my 7th Birthday

Go Figure.
We transplant patients always recognize two birthday's each year. One biological, the other donor gifted. We acknowledge what our donors bestow upon us during the transplants that literally gave us our lives back. Without them not only would we not be here but likewise we wouldn't be the walking medical miracles that we are. On this day I have always honored my donor Bruce tremendously. Simply because he made a difference. A Huge difference... in my life.
Amongst all the unknown, as I move thru treatment this second time around, this date, such a monumental milestone, I had completely forgotten about until I was on the 5th floor late yesterday afternoon. As the staff was confirming all my identifying info, including the date, (for yet another added-on platelet transfusion) it occurred to me that November 14th - Today - is my second post-original transplant "re-Birth" date. I am now officially 7 years old. Seven beautiful, enlightened, active, sweet air breathing, years old. Thank you Bruce.
In commemorating this day, for the past six years I have always sent Bruce a Thank you / Happy Birthday note. This time, with everything that is going on, it simply slipped my mind. I feel awful. Both he & his wife Beth have stood by me, listened to me, supported me throughout this horrible relapse. I can't believe I forgot such a monumental day in my life. I can't believe I'm fighting against this thing again. And still, Bruce donated....yet again, his T-cells. Go Figure.....
To Bruce.
To Life.
Cheers !

Rollarcoaster

Long time. And a rollercoaster of game plans, sudden switches, constantly changing theories. A brutal reminder I am NOT in control of my own body nor of what the physicians have in mind to rescue/recover my marrow. We are breaking new ground and this whole thing is simply a messy moving target.
Quickly and currently; I was admitted back into UW Medical Center for a painful, swollen, and very warm-to-the-touch left knee yesterday. For fear of what could potentially be a dangerous infection. This, along with significant joint-pain in every body joint which has simply escalated as the weeks pass. Enough pain to wake me during the night when simply rolling over in bed. Due specifically to my knee, my SCCA physicians were finally concerned enough to admit me into the hospital to have it drained & the fluid cultured. Thank god there was no infection found. But during the reviewing of timing vs. symptoms it now seems to directly correlate to 2 separate heavy-hitting (and expensive) medications that I had been prescribed. Needless to say both have now been either stopped or adjusted, and I just walked back in my door at home, no longer chained to an IV pole in a hospital.  YAY !!!
Now to back-track a bit: at last post I was given the rather distressing news that they were indeed moving me towards transplant, were/had narrowed down to a single new donor, & that I was now lined-up for a MINI-Transplant, not the one we had previously discussed. A daunting and surprising move that at that moment kinda made sense but scared the hell out of me. Having no bone marrow is a rather daring, vulnerable, and dangerous way to live. And my marrow certainly wasn't returning with any speed nor significance.
However within 38 hours all gears switched....yet again ! Now onto game plan "G" (??). Last Wednesday they decided to cancel the transplant ("not strong enough" for one...), try a synthetic growth hormone - neupogen injections, which in theory encourages neutrophil & white blood cell production. To be followed-up with a second DLI injection 6 weeks from the first (Oct 17th).
I had 2 neupogen injection, one of which did indeed give an uber-nano-bump to the WBC & neutrophils. However the 2nd injection didn't seem to effect anything. I'm not thrilled with synthetics, nor growth hormone, so I am glad they decided to stop this treatment for the time being. Moving forward, and barring any significant GvHD symptoms, we will simply rely on the wait & see method, the second DLI late November/early December, and keep fingers crossed the marrow will return......  And' I don't get sick, be exposed to illness, or have any other complications.
We are currently using the Caregiving Calendar, however only on Mon/Wed/Fri. And probably only 1 weekend-day each weekend. Those on Tues & Thurs will be "on call" for any accompaniment to blood transfusions as needed. I will contact my Weekend Warriors directly.
Thank you ever so much for rockin and rollin' with me thru all this confounding, utterly confusing BS. Honestly I haven't written anything sooner simply because I can't keep up with the changes.  Nor do I know what in the hell to say anymore.  I am not in control of my body.
( tho I wish to bloody hell I was. 'nuff said ! )
K -
P.S. made an appt with Ortho for my knee. What do cancer folks know about old ski injuries pumped-up and aggravated by prophylactic power-antibiotics, right....

Post-DLI & Care Giving plan....

Sorry a bit late in posting. Med-team wanted caregivers with me the entire weekend after Friday's DLI so it was a simply lovely, social, but rather exhausting weekend.
Catching up: DLI was a mildly surprising almost non-event. After Bruce's 5 hr harvest, and I being under the impression it too would be a several hr infusion, it was simply a 10 cc/ml, four minuet (seriously) injection into my central chest line (hickman line). We were rather stunned to say the least. Sooooo very much riding on so very little. The syringe was a watery red color, filled with Bruce's Lymphocytes, which will hopefully kick-start his cells & his/my immune system to fight off any remaining chance of the Leukemia. At the same time we're now holding our breath (literally) & waiting to see how the GvHD (and the GvL) is going to effect me. This is where it may get a bit dicey due simply to the fact I have NO bone marrow - still - and am getting by transfusion to transfusion. And, as advised last Wed: this DLI  "does not preclude a 2nd Transplant".
Thankfully my CareGiver Calendar is completely covered now (whew) but my care is up in the air at the moment. I had the DLI on Friday. I may rock thru it, or I may not. Let's hope for the BEST, but prepare for less than that - just in case. This theory makes my caregiving needs perhaps only a part-time or minimal issue. So...present game plan:  depending on how I physically handle the above, we will keep the calendar in place for the FULL-time caregiving plan. However we will continue on the current PART-time plan we have been using - thereby only calling everyone into play if things start going south for me. Please all continue to be available for the days you have signed-up for, but know that if I am progressing well we may either simply have you quickly swing by, or even call, just to check-in on me ~ and that you may now have a free day to play hookie with as you wish.  = )
Once again I simply can't thank you enough for volunteering to help, signing-up, checking in, to all those not on the calendar who have fearlessly let me become dependent on them: rides to appointments, cooking & delivering food, cleaning, errands, laundry, shopping, etc, etc.... To all my peep's, I continue to be in awe of your profound compassion.....
Now let's all cross every finger & every damn toe !
To Life.

Bruce

Spoke to Bruce today. He donated his lymphocytes for 5 1/2 hrs today, filtering thru 21 liters of blood. Thank you Bruce. Are words even enough? He is stiff & achy from being afraid to move while being hooked up to the apheresis machine. By the time he called the currier was already at the mid-west airport, ready to fly Bruce's cells here to Seattle. They'll arrive sometime tonight. Be counted and prepped. And tomorrow is DLI.
Bruce. My Hero. xo

Moving Target....

Day 56 post-chemo and still NO recovery of my bone marrow. Almost 2 months later. A serious issue. I am now getting by on blood transfusion every 3-4 days.
At Conference on Wed they decided to forego the now "Mini" transplant option in favor of the DLI plan again. The thought being I may still benefit from DLI, and DLI would still leave the door open for a mini-transplant as a last option if DLI should fail. There is however concern that I am now Aplastic Anemic with empty marrow. There is also a significant likelihood that DLI will bring on Graft vs Host Disease (GvHD) which comes hand in hand with the desired Graft vs Leukemia (GvL) effect. The GvHD alone will be the dangerous part for me. Simply because I am already so unbelievably vulnerable with absolutely no protection whatsoever. A VERY key note here: I will not be getting new Stem Cells. This is Donor Lymphocyte cells only - which, in theory, is supposed to fight any budding or residual Leukemia . This procedure will make my blood counts even lower BUT will not make my bone marrow recover.
A friend Daryl found the below link from a UK Leukemia organization which simply explains DLI in very "dumbed-down" terms;  it's process, side effects, management, etc. However, because I am apparently breaking new ground for both SCCA and the typical DLI protocol, this makes my particular DLI a completely different Beast....
https://leukaemialymphomaresearch.org.uk/sites/default/files/donor_lymphocyte_infusion_jan_2012_0.pdf 
The above link is also attached in the column to the right under "Critical Links"
Game plan:  Bruce, my lovely donor, is lined-up to donate on Thurs in the Mid-West. His Lymphocyte cells will be flown here overnight and I will receive his transfusion on Friday Oct 17th. Altho I am of the mind-set to maybe wait a little longer for any possible marrow recovery, it was decided at Conference on Wed to proceed sooner rather than later due to the danger the overly aggressive chemo may potentially bring with it a new round of Leukemia.

Help me qualify....

...for a Transplant. Because I am now ineligible for DLI  I will need the caregiving we were originally planning for in Dec, Jan, Feb.  However we may need to bump-up the time-frame and calendar to now include November (??).  I'm only going by what they are estimating. This is a seriously moving target. Thankfully we have most of both December and January "weekdays" filled already (bless every single person who jumped at signing-up. Simply not enough words, Truly..... ). We are now in true need of 1-day or 2-day Weekend Warriors to jump in as well !


In order for SCCA to move forward to transplant and being single/no family, I need to have a care-giving plan in place. It is their policy to not let a patient proceed to transplant without a plan. It's just far too dangerous for the patient. Please look to the right of this post in the column under "Critical Links". Click on CareGiving CALENDAR and proceed. Honestly it only took me a few moments to figure out how to add a name etc, but it is indeed user-friendly. If you need help pls lemme know.


Given a few weeks notice now & with reasonable planning ahead ability, those of you in the Seattle area that can spare a day perhaps two (or more) please try to grab whatever you'd like to babysit me, help me around the house, read while I perhaps nap, accompany me, & to maybe even have a stunningly radical flippin' Great time with me too. Yes, there will indeed be runny nose's, The Flu, work sending you out of town, last min issues. We'll just have to deal with them. After all that's life right ?  As well as it being both flu & holiday season.  We'll manage, and cover.  But please honor me, sit with me, laugh with me and sign-up for whatever you can. This way I can actually present something to SCCA while getting to spend some quality time with my peep's, my homies, and my countless groupies.  I've been told it takes a Village....
XO

DLI cancelled - Not Good

Day 45, post-chemo #2:
Yesterday's results:  STILL no cell recovery ! Bone marrow completely empty.  stunning.  speechless.
DLI has now been cancelled. I am no longer eligible. And I now have a new disease: Aplastic Anemia - bone marrow failure. Politely informed at yesterday's appointment due to the overly aggressive 2nd round of chemotherapy.  This I already knew...deep in my heart.
Plan (?) is in significant flux. SCCA is pushing a Mini-Transplant now - something I've always been profoundly leery of.  Super low intensity - will it even work ?
Question now: just how in the hell do we proceed ?  Because my Marrow is already empty I'm actually already at the point where stem cells would be infused. How long do we wait ? Do we do a smaller dose of perhaps a cleansing Chemo - causing even more damage ? Do we use my original donor Bruce - ready to go & whom my cells over-took & already relapsed once with ? Do we work-up 1 or 2 of the 30 new matches found instead, praying they will populate, hence less fear of a relapse ? Do we have the time ? Is a Mini Transplant even strong enough ?
I am now treading in new waters. So much so that they are presenting my case to PCC on Wed  (aka: Case Conference, a large meeting of the physician minds bouncing ideas off each other about difficult/rare cases).
Crap. Looking Grim....    & not happy.