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
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