Happy Easter!! I hope you all enjoyed time with family and friends. Jim, Joseph and Emma were here at the hospital and we had a great morning. They spent the afternoon with friends having Easter dinner then Jim took Joe back to Bowdoin. Joe had a relaxing break and is ready to take his recharged self back to school.
Medical Update: About 19 days ago I completed a 5 day course of MEC infusion chemo. The goal was to wipe out the marrow in the hopes it regenerates itself with healthy blood cell production (and no more leukemia). According to a bone marrow biopsy last week, part one is accomplished in that my marrow is completely empty. This week I will start on a new chemo/immune accelerate pill as a complementary strategy to keep the leukemia at bay.
In approx 2 - 3 weeks I will have another bone marrow biopsy to see if my marrow is producing healthy cells AND to see if those cells are from me, my donor, or some combination.
All of this will determine the next course of action; most likely a donor cell infusion (more healthy white cells) along with some additional treatments.
I don't foresee the above changing but one never knows! Will keep you posted as the week goes on.
Thanks for checking in.
Love, Maureen
Sunday, March 27, 2016
Wednesday, March 23, 2016
Wednesday March 23
We had some true Spring weather these past several days with Joe home for Spring break (though he was removing snow from the roof this past Monday!) He's been busy with work (the Tae Kwon Do kids he teaches are thrilled to have him back for a couple weeks), spending time with friends both from North Andover and Boston as he visits his Bowdoin friends at their parents homes and getting some quality time with us - it is especially gratifying to see Emma and he getting so much fun time together. Jim is again keeping it all together as I find myself back in the hospital as of Sunday March 20.
Medical Update: After being home for 9 wonderful days, I was readmitted to the hospital on Sunday March 20th with a slight fever. I am 17 days out from my last round of chemo and this is when my blood counts are at their lowest. The MEC Chemo is designed to wipe my marrow clean of all cells/cell production. The thinking, the hope, is my marrow starts from scratch producing ONLY healthy cells. Before this happens the marrow hits something called nadir where it is producing nothing at all. I am at that period now so I essentially have no white cells to help fight an infection. Thus a fever right now is very dangerous.
Also still experiencing those mouth sores and they were particularly painful when I was admitted. They are doing a fantastic job with pain management and things are getting better - I can eat, swallow and sleep again which makes for a much better quality of life. Fatigue is better as well though rash has returned with a vengence. Luckily it is not too uncomfortable.
So I here I sit watching Jimmy Fallon waiting for my midnight vitals and lab draw. Apparently this must happen at midnight - logic is beyond me and I am happy when they occasionally sneak the time up to 11. Luckily I adore my nurse (which is always true) and it gives me a good chance to say hello to all of you.
Next steps...I hope to go home within the next week. We are waiting for my blood counts to go back up and for me to get some disease fighting neutrofils (a type of white blood cell). I had a bone marrow biopsy today and that will help determine next steps in treatment. Also, despite all of the above we now have an opportunity with the latest round of chemo to get on a better track of treatment continually working toward remission. Amazing with all that has happened I continue to be graced with potentially curative care - again I am keeping the faith until otherwise notified.
That's it - turning in for some zzzz's and will update soon. Blame the latest delay on the appeal of my pillow.
Thanks for checking in.
Love Moe
Tuesday, March 15, 2016
Tuesday March 15
How great it was to have my mom in town this last week. Jim just took her into the airport and I am already looking forward to her next trip out. Emma started volleyball this week with rowing right around the corner. Joseph has kept busy this first week home. He'll be coming with me to the clinic tomorrow.
Medical Update. The chemo I received in the hospital did a great job reigning in my leukemia. As expected we are going to supplement that infusion chemo (MEC) with a pill that acts as both a chemo drug and an immune accelerant. I started that pill yesterday. Initially we were going to give me a little more time to recover from the MEC but the doctors find I am tolerating that chemo very well and are comfortable bringing in this pill which I will take as an outpatient. Next up will be a bone marrow biopsy to determine the status of my disease. From there likely some type of cell infusion from my original donor. My job now is to eat and drink and stay virus free. My white counts are super low so I am again under restrictions to keep me as strong as possible. One bummer is the persistence of my mouth sores. Currently very painful to eat, drink and even talk. Hopefully the further I get from the MEC chemo the more those will heal.
So very grateful to be navigating all of this as an outpatient. Any fever or reaction they don't feel I can manage at home will put me temporarily back in the big house. For now really lucky to be home and showing some good signs of healing.
Thanks for checking in. Love Maureen
Medical Update. The chemo I received in the hospital did a great job reigning in my leukemia. As expected we are going to supplement that infusion chemo (MEC) with a pill that acts as both a chemo drug and an immune accelerant. I started that pill yesterday. Initially we were going to give me a little more time to recover from the MEC but the doctors find I am tolerating that chemo very well and are comfortable bringing in this pill which I will take as an outpatient. Next up will be a bone marrow biopsy to determine the status of my disease. From there likely some type of cell infusion from my original donor. My job now is to eat and drink and stay virus free. My white counts are super low so I am again under restrictions to keep me as strong as possible. One bummer is the persistence of my mouth sores. Currently very painful to eat, drink and even talk. Hopefully the further I get from the MEC chemo the more those will heal.
So very grateful to be navigating all of this as an outpatient. Any fever or reaction they don't feel I can manage at home will put me temporarily back in the big house. For now really lucky to be home and showing some good signs of healing.
Thanks for checking in. Love Maureen
Friday, March 11, 2016
Weekend update Friday March 11
Big day today! Emma has dodgeball this morning (there is hope for youth everywhere as long as kids continue to play dodgeball) Joe is coming home for spring break and I am busting out of here after a two week stay. I should get the weekend off then back to the clinic Monday. My counts will continue to drop so I will need to take precautions (mask, diet restrictions,etc) Otherwise I can go about my day. Sometime soon we'll start talking about the next medication and the donor cell infusion but for now it is home to recover. Feeling good overall. A bit tired and working on my appetite. Still have the mouth sores which are annoying but all manageable.
So have a great weekend everyone and thanks for checking in. Love Maureen
So have a great weekend everyone and thanks for checking in. Love Maureen
Wednesday, March 9, 2016
Wednesday March 9
Good morning. Watching the today show and actually getting into the cooking session - good sign! My Mom arrived on yesterday Tuesday March 8th and will be here until the 15th. My friend Ellen brought her to Beth Israel then home to North Andover.
Today (Wednesday) Jim is traveling so Emma and my Mom are spending the day together. Also had a lovely morning visit from my cousin Margein today (Wednesday).
Emma is working on the crew for the play and Joe comes home for Spring break later this week (probably Friday). He'll be home through Easter so a nice long break. Fun stuff on the horizon
Medical Update: Seem to be tolerating the infusion chemo pretty well so far. This is the 3 cocktail chemo I've been taken over 3 hours for the last 5 days. Yesterday (tuesday) was my also my last day of infusion chemo. No final word on when I'll go home from this stay. At least a few days. Sometimes the bad side effects kick in a few days after the chemo is done so keep your fingers crossed. We will likely start on a pill chemo tomorrow or the next day, see how I do and then send me home on the pill. Still working on the timing on this and will be determined by side effects.
Next up is most likely some type of cell infusion again from my original donor. It would either be a DLI (donor lymphocyte infusion) or Boost (stem cell transplant but outpatient). Determining factors will be level of engraphment of my donor cells in both my marrow and blood stream. They are doing a chrimerism today to see where I am with donor cells in my blood stream. I imagine a bone marrow may be in my near future but timing remains to be seen.
So I got through the infusion chemo with minimal side effects so far. waiting on starting a pill chemo and then giving it another few days in the hospital to see if there are any side effects that will keep me here or if I can head home (dare I say as early as next week??)
Today (Wednesday) Jim is traveling so Emma and my Mom are spending the day together. Also had a lovely morning visit from my cousin Margein today (Wednesday).
Emma is working on the crew for the play and Joe comes home for Spring break later this week (probably Friday). He'll be home through Easter so a nice long break. Fun stuff on the horizon
Medical Update: Seem to be tolerating the infusion chemo pretty well so far. This is the 3 cocktail chemo I've been taken over 3 hours for the last 5 days. Yesterday (tuesday) was my also my last day of infusion chemo. No final word on when I'll go home from this stay. At least a few days. Sometimes the bad side effects kick in a few days after the chemo is done so keep your fingers crossed. We will likely start on a pill chemo tomorrow or the next day, see how I do and then send me home on the pill. Still working on the timing on this and will be determined by side effects.
Next up is most likely some type of cell infusion again from my original donor. It would either be a DLI (donor lymphocyte infusion) or Boost (stem cell transplant but outpatient). Determining factors will be level of engraphment of my donor cells in both my marrow and blood stream. They are doing a chrimerism today to see where I am with donor cells in my blood stream. I imagine a bone marrow may be in my near future but timing remains to be seen.
So I got through the infusion chemo with minimal side effects so far. waiting on starting a pill chemo and then giving it another few days in the hospital to see if there are any side effects that will keep me here or if I can head home (dare I say as early as next week??)
Saturday, March 5, 2016
Weekend Update - Sat March 5th
What goes Baa-dum-psss? A sheep and a drum and a snake falling down a cliff. Probably better said out loud.
Fun weekend in store - Joe is down in Staten island New York doing Heptathlon. This just in---aunt Mary Anne and uncle pat are watching the events and keeping us posted via text and video. Seems to be doing well so far. Emma is heading to her friends basketball game this morning and I think has some other things on tap including coming to see me tomorrow!! Hoping to see some of my closet friends this afternoon if schedules work out. Hopefully get here post shower and before during 3 hour chemo. Mom comes in Tuesday for a week which is awesome
Medical Update: Well we finally got the port removed Thursday night and were able to start the chemo on Friday. It is a 5 day cycle of 3 chemos given back to back (lasts about 3 hours total) - they are MEC (Mitoxantrone, Etoposide & Cytarabine)- two new to me but cousins of what I've received before. One I've had before. The first cycle was given through an IV but those only stay in for a max of 4 days. This morning I received a more permanent line today in my arm. They call it a pic line and we will use going forward. I've had one before and it limits me at bathing suit and tank top season with the access lines hanging from my arm. Also a few too many "Mom what's that??" Anyway all good and if my math is correct I should wrap up the MEC chemo on 3/8. We are also looking to start one of two oral chemos that specifically fight my FLT3 mutation. They want to see how I tolerate the MEC before introducing the FLT3 inhibitor. Both have been effective in the past though one was a bit harder on my GI. We still may try this one as it led to the longest remission and maybe just adjust the dose. Not clear when I'll be leaving the hospital. Will need to see how my body recovers from the chemo.
Still waiting on x-ray results to make sure pic line insertion okay then I can shower,get the chemo,and get to a more regular routine on my future days.
That's it and thanks for checking in!!
Love,
Maureen
Fun weekend in store - Joe is down in Staten island New York doing Heptathlon. This just in---aunt Mary Anne and uncle pat are watching the events and keeping us posted via text and video. Seems to be doing well so far. Emma is heading to her friends basketball game this morning and I think has some other things on tap including coming to see me tomorrow!! Hoping to see some of my closet friends this afternoon if schedules work out. Hopefully get here post shower and before during 3 hour chemo. Mom comes in Tuesday for a week which is awesome
Medical Update: Well we finally got the port removed Thursday night and were able to start the chemo on Friday. It is a 5 day cycle of 3 chemos given back to back (lasts about 3 hours total) - they are MEC (Mitoxantrone, Etoposide & Cytarabine)- two new to me but cousins of what I've received before. One I've had before. The first cycle was given through an IV but those only stay in for a max of 4 days. This morning I received a more permanent line today in my arm. They call it a pic line and we will use going forward. I've had one before and it limits me at bathing suit and tank top season with the access lines hanging from my arm. Also a few too many "Mom what's that??" Anyway all good and if my math is correct I should wrap up the MEC chemo on 3/8. We are also looking to start one of two oral chemos that specifically fight my FLT3 mutation. They want to see how I tolerate the MEC before introducing the FLT3 inhibitor. Both have been effective in the past though one was a bit harder on my GI. We still may try this one as it led to the longest remission and maybe just adjust the dose. Not clear when I'll be leaving the hospital. Will need to see how my body recovers from the chemo.
Still waiting on x-ray results to make sure pic line insertion okay then I can shower,get the chemo,and get to a more regular routine on my future days.
That's it and thanks for checking in!!
Love,
Maureen
Wednesday, March 2, 2016
Wednesday March 2
A gloomy, rainy post super Tuesday here in MA. I am looking forward to a visit from my dear friend Annie today. Lots of good laughs and catching up.
Medical Update: Well it has been a bit of a comedy of errors these last couple days. In my last post I mentioned I need to get my port removed due to an infection. In order to have this procedure, my platelets need to be at a certain level. Generally if my platelets are low (which they are now) I get an infusion of platelets that are specifically matched to me. These HLA matched platelets have been 'special ordered' for me since the Fall and are usually available in the blood bank every 2 - 3 days. Apparently there is an unusual shortfall in the donors needed for these special platelets - it looks like they will be available late tonight so maybe I will get the procedure tomorrow. The chemo probably can't start until I get the current port removed and a new access point (another port, a central line or maybe a pic line) inserted. They are looking at starting the chemo before the port is out but that has its own complications. So the most likely scenario is I get the platelets late tonight/tomorrow, the port removed tomorrow and chemo started the following day/day after. Things could change if the availability of the platelets improve or they decide it is safe to start chemo right away. On a good note, the infection is clearing up (no fever, no bacteria growing in new cultures) but with an infection like this we don't say "cleared up" until two weeks have passed. Bottom line the start of the chemo is delayed which is unfortunate but does not compromise my care - just irritates the hell out of me :)
Thanks for checking in
Love Maureen
Medical Update: Well it has been a bit of a comedy of errors these last couple days. In my last post I mentioned I need to get my port removed due to an infection. In order to have this procedure, my platelets need to be at a certain level. Generally if my platelets are low (which they are now) I get an infusion of platelets that are specifically matched to me. These HLA matched platelets have been 'special ordered' for me since the Fall and are usually available in the blood bank every 2 - 3 days. Apparently there is an unusual shortfall in the donors needed for these special platelets - it looks like they will be available late tonight so maybe I will get the procedure tomorrow. The chemo probably can't start until I get the current port removed and a new access point (another port, a central line or maybe a pic line) inserted. They are looking at starting the chemo before the port is out but that has its own complications. So the most likely scenario is I get the platelets late tonight/tomorrow, the port removed tomorrow and chemo started the following day/day after. Things could change if the availability of the platelets improve or they decide it is safe to start chemo right away. On a good note, the infection is clearing up (no fever, no bacteria growing in new cultures) but with an infection like this we don't say "cleared up" until two weeks have passed. Bottom line the start of the chemo is delayed which is unfortunate but does not compromise my care - just irritates the hell out of me :)
Thanks for checking in
Love Maureen
Tuesday, March 1, 2016
Tuesday March 1
Great weekend spending quality time with Emma and Jim as well as our North Andover friends Jack and Judy plus long time friend Kirsten and her daughter Jane (best bud to Emma). The weekends are kind of a maintenance mindset at the hospital so not much going on. The company not only filled the weekend but helped it go by quickly. My cousins Jane and Margien were here Monday and it was great to have their support as people came in and out of my room pulling together a plan for next steps.
Medical Update: The fever that brought me into the hospital last Thursday was brought on by a staph infection (a bacterial infection in my bloodstream). These can be extraordinarily nasty and I am very grateful the type of staph was categorized quickly and I've been on a targeted antibiotic since Friday. Next up is getting my port (a small disk that sits under my skin and is used for blood draws and infusions) removed - apparently this particular staph infection is 'sticky' and happily finds a home around the catheter that leads from the disk to the vein. Since the port is also how I was to get chemo, we have to identify the best way for me to get those infusions - all decisions in the works right now but will delay the start of chemo by another day at least. So once again we have a situation where my treatment is delayed but not derailed - BIG difference. In the end this adds time to my hospital stay but does not change my treatment plan. Also I am once again spared any life threatening complications things like a staph infection can introduce because we caught it and treated it early (and before my counts are knocked out with the chemo). So no fever, continuing to have decent stamina, getting decent rest - looks like I'll be bringing my best self to this next phase.
As soon as I know details on when I will get the port removed, when I will start chemo, how long I'll be in the hospital, etc. I will let you know. The how long will I be in the hospital question probably won't be answered until I start to recover from the chemo. Anyway not anything I can control so trying to ask good questions, know what can be known and keep it in the day.
Thanks for checking in
Love Maureen
Medical Update: The fever that brought me into the hospital last Thursday was brought on by a staph infection (a bacterial infection in my bloodstream). These can be extraordinarily nasty and I am very grateful the type of staph was categorized quickly and I've been on a targeted antibiotic since Friday. Next up is getting my port (a small disk that sits under my skin and is used for blood draws and infusions) removed - apparently this particular staph infection is 'sticky' and happily finds a home around the catheter that leads from the disk to the vein. Since the port is also how I was to get chemo, we have to identify the best way for me to get those infusions - all decisions in the works right now but will delay the start of chemo by another day at least. So once again we have a situation where my treatment is delayed but not derailed - BIG difference. In the end this adds time to my hospital stay but does not change my treatment plan. Also I am once again spared any life threatening complications things like a staph infection can introduce because we caught it and treated it early (and before my counts are knocked out with the chemo). So no fever, continuing to have decent stamina, getting decent rest - looks like I'll be bringing my best self to this next phase.
As soon as I know details on when I will get the port removed, when I will start chemo, how long I'll be in the hospital, etc. I will let you know. The how long will I be in the hospital question probably won't be answered until I start to recover from the chemo. Anyway not anything I can control so trying to ask good questions, know what can be known and keep it in the day.
Thanks for checking in
Love Maureen
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