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...