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
Sunday, December 28, 2014
Sunday, December 21, 2014
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
Wednesday, December 17, 2014
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
Monday, December 8, 2014
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 !
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 !
Thursday, November 27, 2014
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.
I pray that all of you have equally precious things that you too are thankful for on this day = )
To Life.
Cheers.
Friday, November 14, 2014
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 !
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 !
Thursday, November 6, 2014
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....
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....
Tuesday, October 21, 2014
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.
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.
Thursday, October 16, 2014
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
Bruce. My Hero. xo
Sunday, October 12, 2014
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.
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.
Friday, October 3, 2014
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
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
Thursday, October 2, 2014
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.
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.
Tuesday, September 30, 2014
Dumb it down
Request from Marcia - my Dearest fellow vagabond back-packing lovely soul-Sist'a in London who's spent so much time with me exploring various crazy-assed & remote parts of this wild world...."Please dumb all this way down...for my sake". Even giving permission to use her name here.
So it goes:
Day 44 post-chemo #2 (!!!). Original donor Bruce all set-up & ready to donate again - this time "lymphocyte" cells. But.... DLI treatment now on HOLD. As of yesterday still no reasonable cell return. Neutrophils - the most important - have bleeped in & out with 0.01, 0.00, and 0.02. Nothing solid. Nor anywhere near where they should be. I have been "on the cusp" for 14+ days now without getting over that cusp. No improvement. Needed a bag of Platelet's again last night cuz apparently not holding them vey long. Last transfusion was Wed night.
May now need to skip DLI, go directly to "mini"-transplant (!!!) using Bruce's stem cells (hmmm ?) instead of a New donor simply because he's all lined-up & ready to donate. Mini-transplant has never even been discussed before. Am rather stunned at this newest development. Things not looking as good as they most certainly should be at this point. In fact, rather daunting.
And there it is....
So it goes:
Day 44 post-chemo #2 (!!!). Original donor Bruce all set-up & ready to donate again - this time "lymphocyte" cells. But.... DLI treatment now on HOLD. As of yesterday still no reasonable cell return. Neutrophils - the most important - have bleeped in & out with 0.01, 0.00, and 0.02. Nothing solid. Nor anywhere near where they should be. I have been "on the cusp" for 14+ days now without getting over that cusp. No improvement. Needed a bag of Platelet's again last night cuz apparently not holding them vey long. Last transfusion was Wed night.
May now need to skip DLI, go directly to "mini"-transplant (!!!) using Bruce's stem cells (hmmm ?) instead of a New donor simply because he's all lined-up & ready to donate. Mini-transplant has never even been discussed before. Am rather stunned at this newest development. Things not looking as good as they most certainly should be at this point. In fact, rather daunting.
And there it is....
Tuesday, September 23, 2014
Stagnant
Instead of giving you bits and pieces the thought was to wait until after yesterdays added-on HemOnc appt with my AML chemo team until I had more definitive info to share/update you....
Breifly - The July chemo saw cell recovery start at Day 23. However in the past 13 days since there has been slowly growing concern as it became apparent there was no cell improvement. (because my current WBC's are 0, my Neutrophils are 0 - the 2 most critical measuring points - the 0's should be sufficiently self explanatory). As last week rolled-out, several times my RN expressed mild surprise then mutual concern when 4 separate results continued to support the above. The Bone Marrow Aspiration (BMA) originally scheduled for a few weeks away, she re-scheduled for yesterday. With the addition of last Wed's result she re-schedule the BMA even sooner - to last Friday Sept 19th. Obviously if the BMA was twice re-scheduled to sooner each time there was now concern, at least to a mediocre degree.
Kate and I met with the team yesterday (day 36) for the BMA results. The team was pleased and announced no residual disease present. 2 additional reports were not yet available. Having entered into the 2nd round of chemo already in Remission I found it didn't make sense residual disease would be a concern, even scientifically possible. They continued; though concern they were confidant I was right on the cusp of cell recovery. Even as I feel weaker I kinda think this may be possible from other physical indications I'm experiencing. I also believe they are now acutely aware to project confidence, encourage trust again, perhaps reduce concern, as I had lit significant fire the previous week to simply get the Transplant Consult finally scheduled. An example was offered using a random day 49 that would cause a higher level of alarmed concern. I was also disappointed there were no available results showing baby WBC blast cells, baby RBC's, baby Neutrophils, baby platelets developing in the marrow, and potentially why not. Were we perhaps too aggressive? Should we have waited another week or 2 in between ? He replied maybe yes. But maybe the disease would return. We would keep the New Patient DLI Oct appt, but watch and wait in the meantime, breath held. He suggested I inquire with the DLI/Transplant team about cell recovery levels in order to proceed w/ DLI. Also briefly mentioned: if still no cell improvement nearing the day "49" example, would a synthetic medication encouraging Neutrophil growth be used ? Ultimately I shared my concern if cell recovery showed no improvement period how would this reflect upon any future Transplant should the DLI fail ? Surprisingly, bluntly, he responded next step would be directly into a Mini Transplant, without DLI...at all. We didn't expect that answer. Albeit it makes medical sense. Wow.
Breifly - The July chemo saw cell recovery start at Day 23. However in the past 13 days since there has been slowly growing concern as it became apparent there was no cell improvement. (because my current WBC's are 0, my Neutrophils are 0 - the 2 most critical measuring points - the 0's should be sufficiently self explanatory). As last week rolled-out, several times my RN expressed mild surprise then mutual concern when 4 separate results continued to support the above. The Bone Marrow Aspiration (BMA) originally scheduled for a few weeks away, she re-scheduled for yesterday. With the addition of last Wed's result she re-schedule the BMA even sooner - to last Friday Sept 19th. Obviously if the BMA was twice re-scheduled to sooner each time there was now concern, at least to a mediocre degree.
Kate and I met with the team yesterday (day 36) for the BMA results. The team was pleased and announced no residual disease present. 2 additional reports were not yet available. Having entered into the 2nd round of chemo already in Remission I found it didn't make sense residual disease would be a concern, even scientifically possible. They continued; though concern they were confidant I was right on the cusp of cell recovery. Even as I feel weaker I kinda think this may be possible from other physical indications I'm experiencing. I also believe they are now acutely aware to project confidence, encourage trust again, perhaps reduce concern, as I had lit significant fire the previous week to simply get the Transplant Consult finally scheduled. An example was offered using a random day 49 that would cause a higher level of alarmed concern. I was also disappointed there were no available results showing baby WBC blast cells, baby RBC's, baby Neutrophils, baby platelets developing in the marrow, and potentially why not. Were we perhaps too aggressive? Should we have waited another week or 2 in between ? He replied maybe yes. But maybe the disease would return. We would keep the New Patient DLI Oct appt, but watch and wait in the meantime, breath held. He suggested I inquire with the DLI/Transplant team about cell recovery levels in order to proceed w/ DLI. Also briefly mentioned: if still no cell improvement nearing the day "49" example, would a synthetic medication encouraging Neutrophil growth be used ? Ultimately I shared my concern if cell recovery showed no improvement period how would this reflect upon any future Transplant should the DLI fail ? Surprisingly, bluntly, he responded next step would be directly into a Mini Transplant, without DLI...at all. We didn't expect that answer. Albeit it makes medical sense. Wow.
New on the Radar
I was released early instilling a false sense of confidence while misleadingly trying to do much for myself at home alone. It became blindsidingly apparent (during an embarrassing tearful Aha-moment) that I simply couldn't do it all. Crap, I honestly couldn't walk and talk at the same time, much less stand on-line at the Toyota dealership when I had a car issue. Who woulda thunk it. Hell this was only chemo #2. And typically recognized as not your average patient. We needed to reserve all available care givers for Transplant - when they would be in such great need. Perhaps it was I who was kidding myself. Thanks to my truly Amazing friends my "village" my peep's...and much to my own chagrin - again - I ate crow. We now have a very much downsized mini-care giving routine in place. What the hell would I do without you guys. Flippin' Really.
Current plan: Eyes-on and accompaniment to my every-other-day SCCA appts. A morning and evening check-in phone call for the other days (fevers ?). At least one weekend warrior to enter the dusty basement (can't breath, no energy) to do laundry, take out trash (turning food items-bacteria), and some minor house keeping/errand things. Though nothing further has been scheduled with SCCA pending yesterdays outcome (awaiting a new schedule - hope it's the same). We have peep's already lined-up for tomorrow (Wed), Friday, and I believe one day this coming weekend. The 3 week-day accompaniments' require a certain degree of flexibility. Typically it's 2.5 to 3 hrs with me up at SCCA, but every day is a crap shot. If I need a transfusion it could easily turn into a 5-6 hr day. Moving forward, I have all the contact information of those that previously volunteered (God bless your souls) and will be contacting you directly myself. Of note, this plan is a far lesser degree of what we envisioned for Transplant.
From my heart I thank you all for the help.
Cheers !
Current plan: Eyes-on and accompaniment to my every-other-day SCCA appts. A morning and evening check-in phone call for the other days (fevers ?). At least one weekend warrior to enter the dusty basement (can't breath, no energy) to do laundry, take out trash (turning food items-bacteria), and some minor house keeping/errand things. Though nothing further has been scheduled with SCCA pending yesterdays outcome (awaiting a new schedule - hope it's the same). We have peep's already lined-up for tomorrow (Wed), Friday, and I believe one day this coming weekend. The 3 week-day accompaniments' require a certain degree of flexibility. Typically it's 2.5 to 3 hrs with me up at SCCA, but every day is a crap shot. If I need a transfusion it could easily turn into a 5-6 hr day. Moving forward, I have all the contact information of those that previously volunteered (God bless your souls) and will be contacting you directly myself. Of note, this plan is a far lesser degree of what we envisioned for Transplant.
From my heart I thank you all for the help.
Cheers !
Sunday, September 14, 2014
Transplant vs DLI
Consultation was finally scheduled this past Wed where much information was presented in an informative, concise and knowledgeable manner. And it was all greatly welcomed. Several options were laid on the table surprisingly starting with the 2 Chemos I've had. Wow, this had never been presented. I would likely be fine for a year maybe two. But alas my aggressive leukemia would indeed return. The following option: Donor Lymphocyte Infusion (DLI) mentioned in an earlier post. I agree, weeks ago I agreed that DLI looked very attractive. Discussed (here in layman's terms): less toxic, low intensity, reasonable survival rates projected, not nearly the degree of caregiving post-procedure required. Not nearly the degree of potential organ damage. That being said there is a higher potential of Graft vs. Host Disease (GVHD) including the desired Graft vs. Leukemia effect (GVL). DLI, as mentioned earlier, is typically used as a "rescue therapy" after disease relapse. Usually a year to perhaps 3 years post-transplant. In my case - unchartered waters - the heart of the issue: why would my donors T-cells work once again if ultimately the Leukemia blast cells broke thru/returned after a 7 year remission ? The thought is; after having a long 7 year healthy remission it is hopeful, optimistic and very likely - with the success they have already seen with DLI - that I would simply need a RE-infusion of Bruce's T-cells to (in simple terms) regenerate an equally long, potentially longer, remission. There are indeed DLI patients out there 10 years post-DLI and still going. Therefore still extremely attractive. That is, DLI Alone.
The next option was presented in the possibility of adding on a chemo drug post-DLI. THIS has always been the deal breaker for me. However it was presented as only a cycle or two, 3 months post-DLI, after we've had time to assess the presence/severity of both the GVHD and GVL effects. I would then be very closely monitored. Okay, understandable, and perhaps still attractive. Not so attractive was the potential of taking it a year.
The chemo med was discussed in much closer detail and though perhaps a tad less toxic than many, it still unfortunately includes the usual toxic side effects of vomiting, nausea, diarrhea, immuno vulnerability, etc, and yes, alopecia (hair loss). All of which are Quality Of Life altering issues. Some handle it physically better. Some handle it worse.
Last option, and what most would think was the no-brainer: Transplant. 2nd time around. Much to my own shock I would not be a candidate for another Myeloablative Transplant simply because my marrow may just not repopulate again. Period. The transplant protocol discussed would obviously require a new unknown donor, was not a "mini" but rather a slightly lesser intensity albeit fully toxic one. It would include 4/5 chemo meds for the "cocktail" and TBI (total body irradiation, aka: radiation). This rather freaked me out as MDS is often linked to prior chemo radiation treatments (ie: tv personality Robin Roberts) and my leukemia has always started off as rare high-risk MDS. This transplant protocol would bring with it all the horrors that transplants bring both during the treatment as well as after the "procedure" itself. Mortality rate, 3+ months of 24/7 caregiving, mucositis, TPN tubal nutrition, a significantly higher degree of GVHD and all the medications; anti-rejections drugs, immuno suppressive, pain managing, steroids & anti-steroid damaging treatments, as well as potential liver, kidney, pulmonary damage, and countless other complications. Need I say more. Above and beyond all, who's to say this new donor's cells would even work (!). And if they didn't...DLI would NOT be an option so soon after transplant (!). A frightening scenario that would open a whole new can of worms.
Ultimately, as Diane said, the Aha-moment, well the gold star of several Aha's, was that the overall survival rate of this transplant option was the same/similar to the DLI choice.
Thurs afternoon I chose DLI.
Friday morning I called Bruce. In the middle of explaining all of the above, something both he and his lovely wife have been equally awaiting information on, I quietly stopped....and tearfully said: Bruce ***** , would you please be my donor again.... ?
He replied Of Course.
The next option was presented in the possibility of adding on a chemo drug post-DLI. THIS has always been the deal breaker for me. However it was presented as only a cycle or two, 3 months post-DLI, after we've had time to assess the presence/severity of both the GVHD and GVL effects. I would then be very closely monitored. Okay, understandable, and perhaps still attractive. Not so attractive was the potential of taking it a year.
The chemo med was discussed in much closer detail and though perhaps a tad less toxic than many, it still unfortunately includes the usual toxic side effects of vomiting, nausea, diarrhea, immuno vulnerability, etc, and yes, alopecia (hair loss). All of which are Quality Of Life altering issues. Some handle it physically better. Some handle it worse.
Last option, and what most would think was the no-brainer: Transplant. 2nd time around. Much to my own shock I would not be a candidate for another Myeloablative Transplant simply because my marrow may just not repopulate again. Period. The transplant protocol discussed would obviously require a new unknown donor, was not a "mini" but rather a slightly lesser intensity albeit fully toxic one. It would include 4/5 chemo meds for the "cocktail" and TBI (total body irradiation, aka: radiation). This rather freaked me out as MDS is often linked to prior chemo radiation treatments (ie: tv personality Robin Roberts) and my leukemia has always started off as rare high-risk MDS. This transplant protocol would bring with it all the horrors that transplants bring both during the treatment as well as after the "procedure" itself. Mortality rate, 3+ months of 24/7 caregiving, mucositis, TPN tubal nutrition, a significantly higher degree of GVHD and all the medications; anti-rejections drugs, immuno suppressive, pain managing, steroids & anti-steroid damaging treatments, as well as potential liver, kidney, pulmonary damage, and countless other complications. Need I say more. Above and beyond all, who's to say this new donor's cells would even work (!). And if they didn't...DLI would NOT be an option so soon after transplant (!). A frightening scenario that would open a whole new can of worms.
Ultimately, as Diane said, the Aha-moment, well the gold star of several Aha's, was that the overall survival rate of this transplant option was the same/similar to the DLI choice.
Thurs afternoon I chose DLI.
Friday morning I called Bruce. In the middle of explaining all of the above, something both he and his lovely wife have been equally awaiting information on, I quietly stopped....and tearfully said: Bruce ***** , would you please be my donor again.... ?
He replied Of Course.
Tuesday, September 9, 2014
Discharged, again
Will be heading home in about 2 hrs, after last dose of super antibiotic. No fever in 48 hrs. Tomorrow big day. Transplant consult. Finally.
Monday, September 8, 2014
That dratted fever...
Back to the Hospital. I started with low grade fevers on Friday. Nothing serious, but enough to keep an eye on. Saturday I had some tenderness mostly on the left side of my jaw and neck. The fever, though still low grade, was now slowly rising. I woke up yesterday (Sun) and soon after my fever rose sharply to 101.5. Significantly above the SCCA limit of 100.4 and requiring a trip to the ER. Needless to say I am back in the hospital, but likely for only for 48 hours. I'm being pumped up with antibiotics, a red blood cell transfusion, and hydration. Swelling and tenderness have gone down but a CT-scan has been ordered.
At the same time, via a friend thinking outside-the-box, I received an expected and extremely welcomed call that a Transplant Consultation has now finally been scheduled for Wed afternoon. The hospital staff are aware of the circumstances and the importance of this particular consultation and are focused on getting me out of here in time for it. Could things finally be lining up correctly ?
Stay tuned.... = )
At the same time, via a friend thinking outside-the-box, I received an expected and extremely welcomed call that a Transplant Consultation has now finally been scheduled for Wed afternoon. The hospital staff are aware of the circumstances and the importance of this particular consultation and are focused on getting me out of here in time for it. Could things finally be lining up correctly ?
Stay tuned.... = )
Still Home & crossing fingers....
The following was written on 9/6 but not completed:
15 day's post-chemo, white blood cells and neutrophils at 0 (nader), and still hanging in there ! Feel super weak, enough so that it's surprising even me. I find it a bit difficult to walk & talk at the same time, breathlessness, and it's a bit sobering. That's never happened to me before. I still have about 5 or 6 days left of feeling like Crap (and everything tasting like salty burnt metal) until my levels start trending up again. It's really rather strange, and a fare bit discombobulating being home during this part of chemo. I've never been discharged this early in a cycle. A plan not very well thought out - especially before a long holiday weekend. I find myself slipping easily into post-chemo more relaxed parameters and behavior before quickly realizing I am ridiculously vulnerable. To Everything !!
Though we've requested - on numerous occasions - an SCCA required consult to discuss Transplant vs. DLI, we've been dismayed that there has been no word or contact from the Transplant team, nor anything scheduled yet. Obviously this is a time sensitive situation. Apparently it was mistakenly assumed that I was going directly to DLI. Why... I'm not quite sure. We are in the process of trying to correct this immediately. A consult appt was finally made on Thurs for Oct 2 however this is way too far out. I was informed it would likely result in a 3rd round of chemo. Something I will NOT even consider. There was a potential of a Sept 22 appt but this too is far out. Unfortunately I've had to go out-side-the-box in order to get scheduled as soon as possible, hopefully this Wed (?). Something is presently in the works thru a friend... So keeping fingers crossed and holding breath this one will work out.
Since being discharged I've had a couple of platelet and red blood cell transfusions as an out-patient at SCCA. I've been receiving O+ and was curious about this. Interestingly, I was born B+ but my donor Bruce is A+. After transplant was complete I too became A+. Receiving O+ is fine and apparently more common and equally compatible with A+. However a friend joked she was going to get me a tee-shirt to wear saying "My blood type is A+"....just to keep things clarified. = )
15 day's post-chemo, white blood cells and neutrophils at 0 (nader), and still hanging in there ! Feel super weak, enough so that it's surprising even me. I find it a bit difficult to walk & talk at the same time, breathlessness, and it's a bit sobering. That's never happened to me before. I still have about 5 or 6 days left of feeling like Crap (and everything tasting like salty burnt metal) until my levels start trending up again. It's really rather strange, and a fare bit discombobulating being home during this part of chemo. I've never been discharged this early in a cycle. A plan not very well thought out - especially before a long holiday weekend. I find myself slipping easily into post-chemo more relaxed parameters and behavior before quickly realizing I am ridiculously vulnerable. To Everything !!
Though we've requested - on numerous occasions - an SCCA required consult to discuss Transplant vs. DLI, we've been dismayed that there has been no word or contact from the Transplant team, nor anything scheduled yet. Obviously this is a time sensitive situation. Apparently it was mistakenly assumed that I was going directly to DLI. Why... I'm not quite sure. We are in the process of trying to correct this immediately. A consult appt was finally made on Thurs for Oct 2 however this is way too far out. I was informed it would likely result in a 3rd round of chemo. Something I will NOT even consider. There was a potential of a Sept 22 appt but this too is far out. Unfortunately I've had to go out-side-the-box in order to get scheduled as soon as possible, hopefully this Wed (?). Something is presently in the works thru a friend... So keeping fingers crossed and holding breath this one will work out.
Since being discharged I've had a couple of platelet and red blood cell transfusions as an out-patient at SCCA. I've been receiving O+ and was curious about this. Interestingly, I was born B+ but my donor Bruce is A+. After transplant was complete I too became A+. Receiving O+ is fine and apparently more common and equally compatible with A+. However a friend joked she was going to get me a tee-shirt to wear saying "My blood type is A+"....just to keep things clarified. = )
Thursday, August 28, 2014
Back Home
Morning Folks. Just wanted to get the word out that I was discharged from UWMC yesterday and I am presently home. In reaction to the 2nd round of chemo and as my blood levels continue to drop there is a chance I may be re-admitted if I should develop high fevers or any other complications. But presently I am home. = )
Monday, August 25, 2014
"Caregiving"
I've had many requests to please clarify what "caregiving" is.
Simply put, "caregiving" will largely be "companionship" and monitoring me with a little bit of housekeeping thrown in. It is FAR less "Medical" than what it sounds like. And certainly no reason to be intimidated by it. I will manage anything "Medical" myself ie: connecting my own IV's at home, any injections. However, chemo temporarily effects eyesight so I will need someone to look over my shoulder and read or confirm the small print for me. Counter tops, sponges, dish towels, etc, need to be clean, wiped down w/ a bleach solution and sanitized every day. Laundry will need to be done weekly however I can't go into the dusty basement to do it myself. Food prepping has to observe a code of "no cross-contamination" and is similar to a very strict "pregnancy" diet. Basically I need to have someone with me in case there is an issue or I start developing low-grade fevers. There will be a schedule that we will need to follow for taking meds. We need to record the times, any reactions to them, my temp, glucose levels, etc. In the beginning I will have daily appt's at SCCA and we will need to bring these records with us for each appt. I won't be able to drive for a little while but we'll be able to go out and do things. We just need to avoid crowds and peak hours of exposure. Again it's mostly companionship and housekeeping. Sometimes it may include a run to Costco or a walk to Greenlake or Golden Gardens, or maybe a simple drive out to Snoqualmie Falls for a change of scenery. Other times I may feel totally drained, shaky, and just want to veg-out on the couch.
Presently everything is in fluid motion and greatly depends on how I fare through this second round of Chemo. Only then can we meet with the Transplant Team to get a better idea of potential time frame and treatment. As mentioned in the previous post there may now be 2 options on the table: "DLI" vs. Transplant. There are huge pro's and con's for both. And there are many questions that still need to be addressed. As soon as we know something more definitive we will post it.
Just to the right of this post and directly under my picture you will see a column with the header "Critical Links". The first item listed is the Caregiver Calendar. Please click on the link and take a gander. It's super easy to add your name to this working calendar. Using December as a rough starting point we already have several gracious souls that have committed to most of the hard-to-fill weekday spots, and I profoundly thank them ! Please feel free to add your name if you wish to help out. We will adjust if needed as we move forward and learn more info. Weekend help will be more relaxed - no Dr's appt's.
I am on day 7 of my second round of Chemo. My blood levels are just now beginning to drop. I have 3 weeks of feeling like Chemo-Crap still to come.... however I'm actually feeling kinda okay at the moment. There is talk about releasing me to go home in the next day or so, with the acute awareness that I will likely be re-admitted in a week with high fevers and side effects. Not really sure how I feel about that. Please continue to check-in, call, or swing by to say hi. FYI: Cabin Fever sucks pickles.
Cheers,
K - xo
Simply put, "caregiving" will largely be "companionship" and monitoring me with a little bit of housekeeping thrown in. It is FAR less "Medical" than what it sounds like. And certainly no reason to be intimidated by it. I will manage anything "Medical" myself ie: connecting my own IV's at home, any injections. However, chemo temporarily effects eyesight so I will need someone to look over my shoulder and read or confirm the small print for me. Counter tops, sponges, dish towels, etc, need to be clean, wiped down w/ a bleach solution and sanitized every day. Laundry will need to be done weekly however I can't go into the dusty basement to do it myself. Food prepping has to observe a code of "no cross-contamination" and is similar to a very strict "pregnancy" diet. Basically I need to have someone with me in case there is an issue or I start developing low-grade fevers. There will be a schedule that we will need to follow for taking meds. We need to record the times, any reactions to them, my temp, glucose levels, etc. In the beginning I will have daily appt's at SCCA and we will need to bring these records with us for each appt. I won't be able to drive for a little while but we'll be able to go out and do things. We just need to avoid crowds and peak hours of exposure. Again it's mostly companionship and housekeeping. Sometimes it may include a run to Costco or a walk to Greenlake or Golden Gardens, or maybe a simple drive out to Snoqualmie Falls for a change of scenery. Other times I may feel totally drained, shaky, and just want to veg-out on the couch.
Presently everything is in fluid motion and greatly depends on how I fare through this second round of Chemo. Only then can we meet with the Transplant Team to get a better idea of potential time frame and treatment. As mentioned in the previous post there may now be 2 options on the table: "DLI" vs. Transplant. There are huge pro's and con's for both. And there are many questions that still need to be addressed. As soon as we know something more definitive we will post it.
Just to the right of this post and directly under my picture you will see a column with the header "Critical Links". The first item listed is the Caregiver Calendar. Please click on the link and take a gander. It's super easy to add your name to this working calendar. Using December as a rough starting point we already have several gracious souls that have committed to most of the hard-to-fill weekday spots, and I profoundly thank them ! Please feel free to add your name if you wish to help out. We will adjust if needed as we move forward and learn more info. Weekend help will be more relaxed - no Dr's appt's.
I am on day 7 of my second round of Chemo. My blood levels are just now beginning to drop. I have 3 weeks of feeling like Chemo-Crap still to come.... however I'm actually feeling kinda okay at the moment. There is talk about releasing me to go home in the next day or so, with the acute awareness that I will likely be re-admitted in a week with high fevers and side effects. Not really sure how I feel about that. Please continue to check-in, call, or swing by to say hi. FYI: Cabin Fever sucks pickles.
Cheers,
K - xo
Thursday, August 21, 2014
Back in for 2nd Chemo
Much news to share so this will be a very long post.
First, I apologize for a 2 week delay in up-dates. Neva has a new job that is extremely demanding; working 10-12 hour days, including much traveling, as well as a family to tend to. So for the moment I will attempt to bring everything up to date. Wendy W will also be helping w/ electronic communication as I decline into temporary Chemo ka ka-land. We may even ask for more internet savvy help as we proceed forward. The biggest surprise, aside from reaching Remission - YAY !...is that much to my own chagrin I've been forced to surrender and now own a Facebook page of my very own (!!). Which BTW I totally don't know how to use yet. Please bear with me on this one...
As for the up-date: I was home from the hospital for the planned 2 week break in chemo and re-admitted yesterday afternoon for round #2. Now in "Remission" with no Leukemia detected this doesn't mean we can stop here. Due to the aggressive nature of my Leukemia I will need to continue with treatment. My Dr's appt last Tues resulted in a possible 2nd option on the table - "DLI" (Donor Lymphocyte Infusion). Typically referred to as a "Rescue Therapy" it is far less toxic, less abrasive, less intense than a transplant, but not without its own risk's. This idea initially sounded very attractive. However in my case it will need to include additional "maintenance" medication support treatment which is actually a Chemotherapy drug (with chemo side effects). We don't know yet how long I would need to take it. Quite honestly folks this could be the deal breaker for me. I do not wish to cross that line of Conquering Cancer vs. now continually battling cancer or lingering with it. Apparently this DLI also has a rather short and very unimpressive survival rate of 2-3 years out. Not at all encouraging, especially after reading the research papers.
A new element in the Transplant equation is the realization that a second fully toxic completely myeloablative transplant may not even be an option anymore. Simply because my bone marrow may not have the ability to re-populate itself...at all. That being said....what in the past I would have never considered - a less toxic "mini-transplant" - is exactly what we are seriously considering now. There's been much medical advancement with mini-transplants, as well as a higher degree of long-term success. Or so we've been told. Once I complete this 2nd chemo round & am discharged we will then meet with the Transplant team where all of the above will be on the table to be discussed. And there is much to discuss.
As mentioned above I was re-admitted yesterday afternoon to UW Medical Center. And like clock work they started the chemo almost immediately. Currently I feel surprisingly fine, hence it is I who is submitting this post. I expect I'll start feeling the chemo effects sometime the latter part of next week. I am currently in room 8064 and have a fantastic view of not only snowcapped Mt. Rainier in all her glory, but of Portage Cove & Seattle Yacht Club's dingy sailboat races. How totally appropriate is THAT !!
First, I apologize for a 2 week delay in up-dates. Neva has a new job that is extremely demanding; working 10-12 hour days, including much traveling, as well as a family to tend to. So for the moment I will attempt to bring everything up to date. Wendy W will also be helping w/ electronic communication as I decline into temporary Chemo ka ka-land. We may even ask for more internet savvy help as we proceed forward. The biggest surprise, aside from reaching Remission - YAY !...is that much to my own chagrin I've been forced to surrender and now own a Facebook page of my very own (!!). Which BTW I totally don't know how to use yet. Please bear with me on this one...
As for the up-date: I was home from the hospital for the planned 2 week break in chemo and re-admitted yesterday afternoon for round #2. Now in "Remission" with no Leukemia detected this doesn't mean we can stop here. Due to the aggressive nature of my Leukemia I will need to continue with treatment. My Dr's appt last Tues resulted in a possible 2nd option on the table - "DLI" (Donor Lymphocyte Infusion). Typically referred to as a "Rescue Therapy" it is far less toxic, less abrasive, less intense than a transplant, but not without its own risk's. This idea initially sounded very attractive. However in my case it will need to include additional "maintenance" medication support treatment which is actually a Chemotherapy drug (with chemo side effects). We don't know yet how long I would need to take it. Quite honestly folks this could be the deal breaker for me. I do not wish to cross that line of Conquering Cancer vs. now continually battling cancer or lingering with it. Apparently this DLI also has a rather short and very unimpressive survival rate of 2-3 years out. Not at all encouraging, especially after reading the research papers.
A new element in the Transplant equation is the realization that a second fully toxic completely myeloablative transplant may not even be an option anymore. Simply because my bone marrow may not have the ability to re-populate itself...at all. That being said....what in the past I would have never considered - a less toxic "mini-transplant" - is exactly what we are seriously considering now. There's been much medical advancement with mini-transplants, as well as a higher degree of long-term success. Or so we've been told. Once I complete this 2nd chemo round & am discharged we will then meet with the Transplant team where all of the above will be on the table to be discussed. And there is much to discuss.
As mentioned above I was re-admitted yesterday afternoon to UW Medical Center. And like clock work they started the chemo almost immediately. Currently I feel surprisingly fine, hence it is I who is submitting this post. I expect I'll start feeling the chemo effects sometime the latter part of next week. I am currently in room 8064 and have a fantastic view of not only snowcapped Mt. Rainier in all her glory, but of Portage Cove & Seattle Yacht Club's dingy sailboat races. How totally appropriate is THAT !!
There have been a lot of requests to change the format reporting my blood levels because the numbers on their own have little significance. I know a lot of you remember seeing them in a visual chart format 7 years ago which was far more impressionable. It is my hope to figure out a way to repeat that format or something similar before we head into transplant. Please bare with me/us.
Again, I'm truly sorry for the delay. Please keep checking this blog. And the Facebook thang too. I know this is for the long-haul but please don't give up on me yet ! Also look for a Go Fund Me page to come soon (the reason for the new FB page). And please feel free to swing by in person (call 1st ??), to help ward off endless cabin fever with promises of uber-dirty martini's & alarming my med team by playing Frisbee w/ me down the hallways. Bring your guitar, or whatever entertaining folly you've got going on. Or simply sit by me while I doze off for 10 min. Foot messages and totally inappropriate & politically incorrect jokes may also be welcomed. But most welcomed of all: your smiling face. = )
To Life !
Kristina -
Wednesday, August 6, 2014
Kristina was discharged today! I spoke with her last night, but my life got in the way of posting until now. The best news, besides the fact that she gets to sleep in her own bed tonight, is that her bone marrow biopsy was yesterday and her preliminary results showed REMISSION - no abnormal myeloid blast, monocyte, or myeloid population identified! In medi-speak - "There is no immnophenotypic evidence of residual acute myeloid leukemia (AML) by flow cytometry. Correlation of these findings with morphology is recommended" The last sentence is a disclaimer all reading pathologists place on their findings. In layman's terms - GREAT F'ING NEWS! This does not mean she is out of the woods by any stretch, but it does mean this round of chemotherapy did exactly what it was supposed to. Her next round is designed to keep her in this remission and then head her toward the bone marrow transplant.
She was tired, but relieved and happy to be going home, though a big disenchanted by the fact that she has to continue her IV antibiotic infusions for some days yet. I am sure she is looking forward to some quiet time without poking and prodding every hour.
Another update - shocking to anyone who knows Kristina - she is now the owner of a brand new Facebook page! I set one up in her name in order to lead into a "Go Fund Me" page to help acquire funds to offset her mounting medical/insurance expenses. If you are a Facebooker - friend her, and me if you like! Be aware that right now Kristin Munnell and I are managing her page so if you send any posts, etc., we will be the ones responding to them until we get her Facebook trained!
Happy Hump Day friends - keep those positive thoughts flowing and as Kristina says "to life"!
Neva
She was tired, but relieved and happy to be going home, though a big disenchanted by the fact that she has to continue her IV antibiotic infusions for some days yet. I am sure she is looking forward to some quiet time without poking and prodding every hour.
Another update - shocking to anyone who knows Kristina - she is now the owner of a brand new Facebook page! I set one up in her name in order to lead into a "Go Fund Me" page to help acquire funds to offset her mounting medical/insurance expenses. If you are a Facebooker - friend her, and me if you like! Be aware that right now Kristin Munnell and I are managing her page so if you send any posts, etc., we will be the ones responding to them until we get her Facebook trained!
Happy Hump Day friends - keep those positive thoughts flowing and as Kristina says "to life"!
Neva
Monday, August 4, 2014
Monday may have started with a bang, but....
Its been a day of ups and downs. On the up, Kristina got the good news that her counts are coming up and her physicians are discussing discharging her either Wednesday or Thursday. She has a bone marrow aspiration/biopsy tomorrow around noon, which will give a clearer picture of whether or not she is in remission after this first round of chemotherapy. On the down, she got the news that while she may be discharged, she will need in-home IV antibiotics for a few days to finish her current course. This in itself is not a huge downer, but through the process of planning this, she was informed that her current Medicare supplemental insurance plan (that she struggled for 3 weeks to find and choose) will not cover outpatient (in-home) infusions. As she will need many more of these IV infusions at home following her next courses of treatment, she decided to switch insurance back to her employee Cobra plan from SCCA. I believe this plan is more comprehensive and probably provides better coverage, but the even bigger downside is that it costs twice as much per month as the Medicare supplement would have.
Needless to say, our friend is worn out after a day of riding the emotional rollercoaster. I am creating a Facebook page for her tonight (not something she ever dreamed of having) in order to create a Go Fund Me page for her. Friends and family can donate funds through that page to help cover her medical expenses/insurance premiums. So if you are a Facebooker - find and friend her there.
I will touch base with her tomorrow evening after her biopsy and update everyone as soon as I have new information.
Goodnight all - hoping for a brighter day tomorrow.
Neva
Its been a day of ups and downs. On the up, Kristina got the good news that her counts are coming up and her physicians are discussing discharging her either Wednesday or Thursday. She has a bone marrow aspiration/biopsy tomorrow around noon, which will give a clearer picture of whether or not she is in remission after this first round of chemotherapy. On the down, she got the news that while she may be discharged, she will need in-home IV antibiotics for a few days to finish her current course. This in itself is not a huge downer, but through the process of planning this, she was informed that her current Medicare supplemental insurance plan (that she struggled for 3 weeks to find and choose) will not cover outpatient (in-home) infusions. As she will need many more of these IV infusions at home following her next courses of treatment, she decided to switch insurance back to her employee Cobra plan from SCCA. I believe this plan is more comprehensive and probably provides better coverage, but the even bigger downside is that it costs twice as much per month as the Medicare supplement would have.
Needless to say, our friend is worn out after a day of riding the emotional rollercoaster. I am creating a Facebook page for her tonight (not something she ever dreamed of having) in order to create a Go Fund Me page for her. Friends and family can donate funds through that page to help cover her medical expenses/insurance premiums. So if you are a Facebooker - find and friend her there.
I will touch base with her tomorrow evening after her biopsy and update everyone as soon as I have new information.
Goodnight all - hoping for a brighter day tomorrow.
Neva
Happy Monday All!
We are starting off the week with a bang - just got an update from Kristina and her ANC count is up to 200 (120 yesterday, it seems to be almost doubling daily). This is GREAT news. She said her doctors were just in and they are discussing discharge.
I will update when we have more specifics, but wanted to let everyone know this good news!
Neva
We are starting off the week with a bang - just got an update from Kristina and her ANC count is up to 200 (120 yesterday, it seems to be almost doubling daily). This is GREAT news. She said her doctors were just in and they are discussing discharge.
I will update when we have more specifics, but wanted to let everyone know this good news!
Neva
Friday, August 1, 2014
Happy Friday! Good news today - I spoke with Kristina last night and she sounded much more like her "self". Also - the big news - her ANC (neutrophil) count was up to 20 yesterday. Kristin just spoke with her this morning and it is now at 70! This means her counts are coming up as hoped for - great way to start the weekend. Kristin said she sounded tired, but I also know she is battling to get her application in for a grant to help manage her medical expenses and the process is time and energy comsuming.
Give her a call before visiting to make sure she is up for it and keep those good vibes flowing people!
Have a great weekend -
Neva
Give her a call before visiting to make sure she is up for it and keep those good vibes flowing people!
Have a great weekend -
Neva
Tuesday, July 29, 2014
So the third time is a
charm – I have created and lost this update twice….here goes!
I spoke with Kristina
last night and she is not feeling well. It
has been a rough week. Over the weekend she began spiking fevers and
experiencing very low blood pressure. Her medical team ran tests and blood
cultures to try to find the source. So
far her cultures have grown out a run-of-the-mill staph infection. For we healthy folks, this would be no big
deal, we all carry staph in our bodies and fight it off regularly. For Kristina, in her compromised immune
state, however, this infection is making her feel, well, like crap. She is
being treated with IV hydration and IV Vancomycin, a strong, broad-spectrum
antibiotic to fight off this infection.
Her blood counts are not coming back up as quickly as she experienced
previously and this is distressing to her, although her physicians say not to
worry, every “body” reacts differently at different times. She is unable to walk or stand unassisted due
to her low pressure and this is very frustrated and defeating to her as she
cannot do her “laps”.
Her nurse did have to
shave her blond locks over the weekend as her hair was beginning to fall out
and was, as she put it with a tired, frustrated laugh, “all over the place”. Kate ordered her a Smartwool cap that she
will rock, I’m sure. Kristin and I are going to show up with Henna and decorate
her beautiful bald head!
While she welcomes and
loves our visits, please call first as she is not always feeling up to having
visitors at this time. Use the hospital
phone number first of 206-906-7470. Also,
her hospital meals have been arriving cool or cold and have been rather
unappetizing. If you bring food, please
let her know ahead of time. If food is brought into her room it cannot be taken
out to be reheated. You may heat a
portion for her prior to entering her room and leave the rest in the floor refrigerator
for her to enjoy later.
Kristina added a
caregiving calendar link to this page just to the right of this post under “critical
links”. We need to get folks on board and committed to a caregiving schedule.
While it is not critical at this point, SCCA will not proceed with her
transplant until they see a firm schedule in place prior to her discharge. Kristin Munnell and I both took care of
Kristina last time and although I have a medical background, it is certainly
not needed. She will need help with
meals, errands, light housekeeping, keeping up your end of the conversation (we
all know how this woman can talk!), and generally keeping her healthy and
safe. Its and easy rewarding way to show
our love and support of this amazing lady.
Continue to send your
positive thought and healing energy her way, she is feeling pretty defeated at
this point and needs our love and support!
Thank you my friends – more soon!
Neva
Tuesday, July 22, 2014
...and so the hair goes
Good news and; not so good news. As of this morning I am officially out of "Isolation". The rash was nothing more than a reaction to one of the med's I am on. Visitors no longer need to suit-up in gown and gloves before entering my room. This also means I can again leave my room to walk laps around the 8th floor unit (geez, just 2 wks ago I climbed up to 4000 ft ). Because the floor is full with patients I may not be able to move rooms again. Regardless, being mobile is a good thing, I was beginning to sink into cabin-fever.
Today's blood levels are:
WBC .29
ANC 0
HCT 28
Platelets 44
On Sunday I received my 4th blood transfusion. My HCT didn't bounce back after Saturday's RBC transfusion so they gave me another. I also found an interactive calendar that we will use when the time comes. Please see right-side column under "Critical Links". We will need to set-up a plan sometime in Sept for post-transplant care in possibly Dec, Jan and Feb.
On a different note: my hair is finally starting to fall out. As I run my hand thru it I am left with strands draped between my fingers. This makes me sad. So unbelievably Sad. There's no denying now. I've reach that definitive point of no return. And it's hard to swallow. By Thurs/Friday it will be coming out in clumps, just like last time. What a surreal phase in this journey.
I don't really know why I decided to attach the below photo, but I did (my original is in focus). Maybe because this is one of the last things in my cancer diagnosis that I hoped to hold on to, to look like a healthy real person instead of a ghost of myself. As I let this image slide away I need to focus on what comes next, no matter how much I dread it.
Today's blood levels are:
WBC .29
ANC 0
HCT 28
Platelets 44
On Sunday I received my 4th blood transfusion. My HCT didn't bounce back after Saturday's RBC transfusion so they gave me another. I also found an interactive calendar that we will use when the time comes. Please see right-side column under "Critical Links". We will need to set-up a plan sometime in Sept for post-transplant care in possibly Dec, Jan and Feb.
On a different note: my hair is finally starting to fall out. As I run my hand thru it I am left with strands draped between my fingers. This makes me sad. So unbelievably Sad. There's no denying now. I've reach that definitive point of no return. And it's hard to swallow. By Thurs/Friday it will be coming out in clumps, just like last time. What a surreal phase in this journey.
I don't really know why I decided to attach the below photo, but I did (my original is in focus). Maybe because this is one of the last things in my cancer diagnosis that I hoped to hold on to, to look like a healthy real person instead of a ghost of myself. As I let this image slide away I need to focus on what comes next, no matter how much I dread it.
Saturday, July 19, 2014
ALERT: Yet another room change...
Just a quick up-date: I have once again changed rooms. My new room is #8004 & new ph #206-906-7470. After an up & down week, we noticed the other day that I had developed a mild rash. By yesterday afternoon the rash had grown a little bit. My medical team believes that this may be a reaction to one of the med's I am on (not surprising), but to be on the safe side for all the other patients on the floor they have moved me into an isolation room until test results come back. We want to rule out things like chicken pox, shingles, zoster, etc. I know a few of you were planning on visiting today, which is still welcome, but all visitors will need to suit-up in a yellow gown, gloves and a mask. Several of you have children. Unfortunately we don't have protective gear in their size. Therefore it is probably best if they do not accompany you should you decide to visit today, and possibly even tomorrow.
This week was much watching as my blood levels continued to drop. Wednesday was a bit scary. As mentioned in an earlier post my blood pressure - which has always been a healthy low-normal dropped significantly and I almost passed out while showering. 6 or 7 nurses came flying down the hall & into my room when I had to pull the alert cord. Presently I have .25 white blood cells, no neutrophils, hematocrit was holding at 29, but is now down at 24 today, and my platelet count was down to 9. Yesterday I received a Platelet transfusion, and this morning I am hooked up to a red blood cell transfusion - my third transfusion since being admitted. I still have my hair, but I imagine it won't be for much longer. It feels slightly different, strange, kinda straw-like. The hair on my shaved legs has stopped growing.
To give you some perspective, here are the normal blood ranges compared to today's level:
Normal Today
White Blood Cells (WBC) 4.3 - 10.0 .25
Neutrophils (ANC) 1.8 - 7.0 0
Hematocrit (HCT) 36 - 45 24
Platelets 150-400 97
Much of my time has been spent trying to muddle thru all the medical insurance issues, applications and disability forms. Countless phone calls later and I feel like I've made only a little progress. Many of you have offered a helping hand. Yes, I will indeed need it. I am being geared up for a 2nd Transplant. Depending on how I fare with these 2 chemo rounds it is likely that the transplant may potentially be in November (??). However - as is Fred Hutch policy - I need to prove I have a caregiving team in place before I head to transplant, otherwise I will not be eligible. We will do the repeat strategy we used 2007 & 2008 - evening & weekend warriors sign-up, but this time the crucial push will be for weekday daytime care for the couple of months immediately following the transplant. In all honestly this is very easy, very much like babysitting but also accompanying me to daily dr's appt's at SCCA for close monitoring. Please stay tuned as we figure out a way to post an interactive Calendar linked to this page. I'd also like to give a YOU GO GIRL cry out to my friend Anna who at this very moment is summiting Mt Rainier 14,000 ft and is carrying my Tibetan prayer flags with her. To the Summit ! ! To Life !
This week was much watching as my blood levels continued to drop. Wednesday was a bit scary. As mentioned in an earlier post my blood pressure - which has always been a healthy low-normal dropped significantly and I almost passed out while showering. 6 or 7 nurses came flying down the hall & into my room when I had to pull the alert cord. Presently I have .25 white blood cells, no neutrophils, hematocrit was holding at 29, but is now down at 24 today, and my platelet count was down to 9. Yesterday I received a Platelet transfusion, and this morning I am hooked up to a red blood cell transfusion - my third transfusion since being admitted. I still have my hair, but I imagine it won't be for much longer. It feels slightly different, strange, kinda straw-like. The hair on my shaved legs has stopped growing.
To give you some perspective, here are the normal blood ranges compared to today's level:
Normal Today
White Blood Cells (WBC) 4.3 - 10.0 .25
Neutrophils (ANC) 1.8 - 7.0 0
Hematocrit (HCT) 36 - 45 24
Platelets 150-400 97
Much of my time has been spent trying to muddle thru all the medical insurance issues, applications and disability forms. Countless phone calls later and I feel like I've made only a little progress. Many of you have offered a helping hand. Yes, I will indeed need it. I am being geared up for a 2nd Transplant. Depending on how I fare with these 2 chemo rounds it is likely that the transplant may potentially be in November (??). However - as is Fred Hutch policy - I need to prove I have a caregiving team in place before I head to transplant, otherwise I will not be eligible. We will do the repeat strategy we used 2007 & 2008 - evening & weekend warriors sign-up, but this time the crucial push will be for weekday daytime care for the couple of months immediately following the transplant. In all honestly this is very easy, very much like babysitting but also accompanying me to daily dr's appt's at SCCA for close monitoring. Please stay tuned as we figure out a way to post an interactive Calendar linked to this page. I'd also like to give a YOU GO GIRL cry out to my friend Anna who at this very moment is summiting Mt Rainier 14,000 ft and is carrying my Tibetan prayer flags with her. To the Summit ! ! To Life !
Tuesday, July 15, 2014
An Introduction and An Update
Hello Friends -
For those of you who do not know me, my name is Neva Martin. I met our lovely Kristina a mere 23+ years ago through mutal friends and family while slinging fish at Excursion Inlet, AK. I will be taking over updating of this blog from Paul - although I doubt my skills match his!
Kristin Munnell and I visited with Kristina Sunday night and she was in good spirits and feeling fairly well that day. We had the pleasure of meeting two of her hiking group friends as well. She had some nausea in the days before, but that had subsided. Her blood counts are going down as expected and will continue to do so. This round of chemo is over, now wait and watch those counts.
Her counts today were: WBC (white blood cells) .11
ANC (neutrophils) 0
HCT (hematocrit) 27
Platelets 32
Kristina has moved to a new room tonight #8058, with a new phone number of 206.906.7493. Try this landline before her cell when calling. She welcomes visitors (healthy ones please) and her doctor even told her she could share a glass of wine with us! Party time in Oncology! A phone call before visiting is still a good idea, as her energy waxes and wanes. A reminder that no live flowers or plants are allowed on her floor.
I have worked in the medical field for many years, so please feel free to reach out to me as well with any questions you may have.
Keep that positive energy going out to our brave and beautiful friend!
Neva
For those of you who do not know me, my name is Neva Martin. I met our lovely Kristina a mere 23+ years ago through mutal friends and family while slinging fish at Excursion Inlet, AK. I will be taking over updating of this blog from Paul - although I doubt my skills match his!
Kristin Munnell and I visited with Kristina Sunday night and she was in good spirits and feeling fairly well that day. We had the pleasure of meeting two of her hiking group friends as well. She had some nausea in the days before, but that had subsided. Her blood counts are going down as expected and will continue to do so. This round of chemo is over, now wait and watch those counts.
Her counts today were: WBC (white blood cells) .11
ANC (neutrophils) 0
HCT (hematocrit) 27
Platelets 32
Kristina has moved to a new room tonight #8058, with a new phone number of 206.906.7493. Try this landline before her cell when calling. She welcomes visitors (healthy ones please) and her doctor even told her she could share a glass of wine with us! Party time in Oncology! A phone call before visiting is still a good idea, as her energy waxes and wanes. A reminder that no live flowers or plants are allowed on her floor.
I have worked in the medical field for many years, so please feel free to reach out to me as well with any questions you may have.
Keep that positive energy going out to our brave and beautiful friend!
Neva
Saturday, July 12, 2014
Summer Daze of chemo:
The past two weeks have been both intensely surreal and chaotic, hence the lack of a new update. So sorry for the delay. I've had a tremendous amount on my plate aside from the diagnosis. Most important was moving my mother and her belongings into a newly available spot within the community she lives in before I was admitted. She now requires far more caregiving. Needless to say this was a tremendous endeavor, considering the timing and circumstances.
On Monday July 7th I had a MUGA study test at Seattle Cancer Care Alliance (SCCA) to confirm heart pumping ability thru my left ventricle. This is to ensure the chemotherapy I receive thru my Hickman chest-tube will not pool in the ventricle. Tuesday the 8th I was admitted into University of Washington Medical Center and Chemo started right away. Rather daunting. I am now day 5 into my High Intensity Chemo, this the last day. Wednesday was the worst so far with nausea and a small bit of vomiting - only a glimpse of what may yet come. A new added element, my blood pressure has been running rather low. The lowest 89/43 and 88/52 but I have no other symptoms so we're simply monitoring it at this point.
How am I feeling ? That's a loaded question. I'm still horrifically stunned I'm back in this place, again. My appetite is diminishing far sooner then I would have thought this time. The nausea is being masked (just barely) with various med's. My blood counts are dropping.... significantly, which is what we expected. I likewise needed my very first red blood cell (RBC) transfusion on Wed, far sooner than I thought. I've been surprisingly lethargic, likely due to my hematocrit being low at 24. It's a bit scary when all the blood lines bottom-out. This means I have no protection against virus, fungus, bacteria, etc.
Once Neva returns and takes over posting these somewhat daily updates we will be posting bloods levels as well as an interactive calendar. Blood results are an extremely crucial element in charting the progression of the treatment. On a different note, there are several hospital regulations that must be observed on the Leukemia floor (8SA wing). As mentioned earlier no live flowers or plants. Home-made fully cooked food is always welcome (dependent on my appetite) but all food must stop off at the nursing station first. Only bring to the room what will be eaten. If food comes to my room first the leftovers can not be stored in the community Patient refrigerator. If you have a cold, or even just a runny nose please wait to visit until it has resolved. Neither I nor any of the other patients on this floor have enough cells on-board to fight against infections. Thanks so much for observing and understanding this.
Game plan is now 2 rounds (!!) of this high intensity Chemo, with perhaps 2-3 weeks of rest in-between - if all goes well. Then, if I decide to carry on to another transplant, it will be a 6+ week wait after the final chemo. This would likely be sometime in/near November ?? This whole thing just kinda sucks pickles a bit.
Please continue to visit (rm 8420) or call thru the hospitals main # . Please don't be offended if I'm tired, or uber-spacey, I would still love to hear/see you. Maybe call 1st. If I'm feeling crappy I'll let you know. With that being said, please also don't wait for me to reach out and initiate contact first. Simply for the above mentioned reasons Everyone of you have been simply wonderful with the rallying calls for victory and offers of support. At the moment we think we will likely need help mid-Sept after the 2nd round of chemo. And again if we move onto Transplant. Potentially Nov, Dec, and into Jan. Yikes !!
Again... WTF ? ?
Kate has so graciously volunteered to be the point person this go-around. We are putting together a list of names who offered support and various needed skills. However it probably wouldn't hurt to reach out to Kate as well. Her e-mail is:
katred1969@hotmail.com
.
The group e-mail might be the last one sent out via internet. We will likely post updates, photo's and links directly to this web page. Please check in here every few days for the scoop.
http://kristinasouthard.blogspot.com/
And....for odd cravings of the week: a super dirty martini & tater tots = )
Stay tuned
To Life
Kristina -
Oh, P.S. does anyone have a good quality Baby Monitor they'd like to get rid of ? This played a significant role in my nighttime monitoring right after the transplant 7 yrs ago...
Saturday, June 28, 2014
I am speechless. And utterly stunned at the sheer amount of powerful words of encouragement, offers of support, and of course rallying cries to bust through the glass ceiling of odds. In fact I am stupefied. Each and every response was profoundly needed, desperately welcomed, and in the same breath a tiny bit heartbreaking as it likewise confirmed I am indeed in the same spot as before. My soul has been touched deeply by every single one of you, individually, and beyond anything you could even imagine. I am honored. Truly. Thank you All for touching my heart.
I will be admitted into UW Medical Center Seattle on July 7th. First priority is to beat the leukemia back into remission before we can consider any next steps. There are 2 chemo options on the table. One is an intense but standard protocol. The other is a similar & equally intense clinical trial. The length of stay in hospital will largely depend to how well I will fare and the degree of full time post-chemo caregiving needed at home. I may be admitted for an entire month. Instead of me sending out updates while likely feeling very much like ChemoCrap - and as we found necessary 7 years ago - we will be reviving my old Transplant web-page in an attempt to communicate on a regular basis & to keep everyone in the loop. Please simply Google "KristinaSouthard.org" or use the link below:
http://kristinasouthard.blogspot.com/
For those of you onboard from last time you know how it works. For those who are new on this journey, most transplant patients have a Transplant webpage/journal for communication and to post blood levels. Daily blood counts are so very crucial to us. They measure our tiny successes. Although this round of chemo is not quite a "transplant" yet the webpage will have helpful links, daily postings of my progress, blood counts, and a calendar where volunteers can sign-up to lend helping hands. Even though much of this relapse is so unknown and dependent on my resiliency, we know I will need some help. We just don't know exactly for what yet....nor when. Fear not, we will put the call out when we know. Neva has volunteered to be the web-master this go around and will likewise be able to translate medical jargon into understandable layman's terms. We are also gathering names & numbers of those who have already offered their support. My fear is with everything I must manage & arrange at the moment it is so very very difficult for me to get back to each & every one of you personally. There simply aren't enough hours in a day. I have soooo very much to do. Continue to call & e-mail. But please forgive me..... Just know you are in my heart.
And lastly....if you're in Seattle, please swing by the hospital and perhaps save my sanity ? Snake charmers, dirty martinis, Burning Man fire shows & rowdy ozzie pub tunes all welcome.
I praise you, and thank you.
To Life !
Kristina xo
Friday, June 27, 2014
I Don't Know Where to Start
....truly.
Nor do I really know what this all means....
Yesterday afternoon I was diagnosed with MDS/Leukemia...again. How Ironic, this being on the heels of the Leukemia Cup Regatta only 2 wks ago. And after 7 years of being cancer free. I am in utter disbelief. Simply numb. And just plain devastated. I just returned from North Africa only a few weeks ago. I just hiked 6+ miles up to Snow Lake in the Cascade Mountains (4000 ft) on Sunday. I simply don't understand how this can happen. I don't understand how this can happen yet again. It's just not fair.
There are too many of you spread out across the country...and too many of you out around the world. Admittedly this is a rather crappy way to include you in the loop but there just isn't enough time to call everyone individually right now & explain. This is all rather sudden... I'm so sorry for this rather crude mode of communication but I love too dang many of you to not let you know. So.... just like last time, email is the best option. Except this time I'm sending it myself.
I know you have questions. No fear, I too have endless ones myself. I have a new Oncologist who is putting all the options on the table and we are discussing the imminent next steps. Part of the plan: I will be admitted into UW Medical Center here in Seattle for an intensive round of inpatient-Chemo. If you can think of anything I may overlook - perhaps due to my brain being numbed, please speak up ! ! !
Please also bare with me as I wrap my mind, and my heart around all this....
Love Kristina -
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