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 !
Friday, November 14, 2014
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.
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