I've been home from the hospital since Thursday and I am still adjusting to things.
Not being home per se. That's been pretty easy. The kids are glad I'm home (their first words to me - "We're hungry. What can we eat?". The Hubs has been doing a good job feeding them. But I think they see me and think 'Food Source"). The pets are thrilled I'm home. Pippin the cat has been happily sleeping on my head and the dog just keeps checking to make sure I stay home. Yes, puppy - I sure hope so! Of course, the Hubs is very glad I'm home too! It's not easy being the only adult for six weeks.
But I came home with a lot of new meds, IVs, and - delightful - a medically induced (although temporary) diabetes. So I'm trying to figure out which meds to take on an empty stomach. Which to take on a full stomach. When to take my blood sugar in the morning so that I can eat the food I need for the full stomach meds without disrupting the empty stomach meds. How to give myself insulin (it's not that bad, it just involves a Chart, which is a pain). How to stick myself (again not bad but I goof sometimes).
I am also dealing with some serious light-headedness due to low blood pressure. So I get a liter of saline every day but have not figured out the best time to get in in order to get the least amount of dizziness.
I have another IV med that needs to be taken in the afternoon, along with one of the empty stomach meds.
Oh - did I mention I need to make sure my meals are timed pretty well because of the blood sugar stuff?
It's a bit dizzing. And a bit discouraging. A year ago, I finished my transplant and had the long 100 days of Super Restrictions. I don't have those restrictions now (hooray) except for some dietary ones. Which I must interupt and say how mad I am that I am missing strawberry season for the second year running. But I feel on some level like I'm back at square one. Recovering from chemo. Waiting on all these meds to sort themselves out.
But underneath all of that, I can feel that I am healthier than I was six weeks ago. Something happened. The chemo killed off Something Bad and the BOBB did Something Good. In fact, every single one of my doctors is glad that I have liver issues. That's a weird group of guys, but it means things are working. If they are working, then I have a good chance of beating the Scourge. And since beating the Scourge means living, bring on the liver issues!
I'll figure all of this out. It's going to take more time and patience. I wish I had a bottomless well of that but I don't. But I'll dig a little deeper and look at my long-term outcome and where I want to be. A leukemia survivor. It's a long road. One I never wanted to travel. But here I am and so I will put one foot in front of the other and just figure it all out.
Sunday, June 3, 2018
Friday, May 11, 2018
Guess Who's Back...
Little Bald Head has something important to say. Feel free to share!
Don’t be
fooled by beautiful tresses,
Perfect
coifs, or even crew cuts
The bravest
girls have the baldest heads
We fight
harder because the battle is tougher
We attack
harder because our enemy is elusive
We hope
harder because without hope there is nothing
We love
harder because we know how precious life is
For all of
those bald warriors out there – those who have fought their battle and those
still fighting and those who will have to fight the fight someday. Stay
strong. Stay diligent. Believe in
yourself.
Bald is
beautiful.
Tuesday, May 1, 2018
BOBB Dilly Dilly!
Yesterday was the big Blast O Brenda Booster™ day. The docs call this proceedure a DLI - Donor Lymphocite Infusion. Or Dilly,as I like to call it. Actually, the BOBB™ is the best name for it, in
my opinion.
The procedure was rather complicated. First. Brenda and Colleen went down to radiology VERY early in the morning, so Brenda could get something called an IJ - Intervenes in her Jugular. Yikes! Then they went over to aferesis where she was hooked up to a big machine that cycled through all
of her blood and pulled out the t-cells for me. This took close to four hours. When they were done, they literally ran with the bag of cells first, and then tended to Brenda second. She had a great nurse who made sure she was well taken care of during the procedure.
Then Brenda had to go back to radiology so they could remove the IV. Her neck is sore today and
will probably be sore for a few days.
Colleen was the best cheerleader. She stayed with Brenda, but also came up to my room to see how I
was making out.
They both came up when it was over and we had a nice hug and goodbye. Love these shirts that Colleen made for us.
At about 4 o'oclock, the bag of cells finally came up tp me. I thought it would be like my transplant, which was pretty simple - just hooked up to the bag. But instead, I was hooked up to a heart monitor for four hours and had my vitals taken every 30 minutes. It was a small bag of
The Hubs sat with me throughout my end of the proceedings and was amazed at how often my vitals were checked and how long it took for that tiny bag to infuse. I am so glad he was here!
So now we wait for the cells for settle into the bone marrow and meet their old friends, Brenda's marrow. I hope they can work together to not only kill any leukemia that might remain, but
to also graft 100% so I'll be all Brenda and none of me. Which sounds so odd. But that's the goal!
Go BOBB™!!
Friday, April 27, 2018
Keep On Keepin' On
I've been here over a week already, so I thought it was time for a few updates:
1. The food has not gotten any better in a year. Thankfully, there is usually Cheerios
available in the pantry. Also - wiser this time - brought in a lot of my own food.
2. Sleeping through the night can be a challenge. My blood pressure normally runs
low, but they like the top number over 100 here in the ol' hospital. So they will get
me up at midnight. Take the BP. Sit me up. Take it again. Mumble "Hmmmm..." and
then connect me to a bag of saline. Then they will do it again a few hours later. Not a
big deal overall, but can be frustrating.
3. My room has a lovely view - there is a large Maple tree right outside, and I am able
to watch Spring unfold (such that it is this year). It also brings in some sunshine. Rumors
are that I may be able to go sit outside in a little courtyard once the sun comes out. That
would be nice.
4. Chemo is finished. I would love to say "for forever" but don't want to tempt the Evil Eye. It's
done for now. I did pretty well with it, and oddly, feel better than I have in months. There
was something not right, and the chemo seems to have washed it away.
5. Still getting platelets and other support blood, but not at the alarming rate as before I
was admitted. The big day will be when my platelets actually increase in number - has not
done that in many months.
6. My other bloodwork looks good. I'm pretty wiped out but that's where it should be.
Docs are happy with it, so I'm happy with it.
7. Biggest News - my Blast of Brenda Booster™ will finally happen on Monday. The
hope is that those extra cells from my sister will finish off the job of the chemo and
destroy this disease forever. Both sisters, Brenda and Colleen, will be sleeping over on my
floor - pajama party! - since the proceedure begins early in the morning. It should not be
too taxing on anyone (I hope!!!) I am so grateful to these two strong women who have
my back always. They say a triangle is the strongest shape. I like to think that with the
three of us together, we can be invincible.
8. Brenda put together a prayer circle chain - hopefully you read about that. It's to give
strength to her cells and strength to me. If you have a few minutes on Sunday night
about 7pm Eastern, 4pm Pacific time, just send us some healing energy in whatever form
works with you. I do believe in the power of that energy and it's ability to heal.
In the meantime, I'm here - just keepin' on. If all goes well, I'm over 1/4 done with my stay
already. And I feel good. Counting all the small blessings!
1. The food has not gotten any better in a year. Thankfully, there is usually Cheerios
available in the pantry. Also - wiser this time - brought in a lot of my own food.
2. Sleeping through the night can be a challenge. My blood pressure normally runs
low, but they like the top number over 100 here in the ol' hospital. So they will get
me up at midnight. Take the BP. Sit me up. Take it again. Mumble "Hmmmm..." and
then connect me to a bag of saline. Then they will do it again a few hours later. Not a
big deal overall, but can be frustrating.
3. My room has a lovely view - there is a large Maple tree right outside, and I am able
to watch Spring unfold (such that it is this year). It also brings in some sunshine. Rumors
are that I may be able to go sit outside in a little courtyard once the sun comes out. That
would be nice.
4. Chemo is finished. I would love to say "for forever" but don't want to tempt the Evil Eye. It's
done for now. I did pretty well with it, and oddly, feel better than I have in months. There
was something not right, and the chemo seems to have washed it away.
5. Still getting platelets and other support blood, but not at the alarming rate as before I
was admitted. The big day will be when my platelets actually increase in number - has not
done that in many months.
6. My other bloodwork looks good. I'm pretty wiped out but that's where it should be.
Docs are happy with it, so I'm happy with it.
7. Biggest News - my Blast of Brenda Booster™ will finally happen on Monday. The
hope is that those extra cells from my sister will finish off the job of the chemo and
destroy this disease forever. Both sisters, Brenda and Colleen, will be sleeping over on my
floor - pajama party! - since the proceedure begins early in the morning. It should not be
too taxing on anyone (I hope!!!) I am so grateful to these two strong women who have
my back always. They say a triangle is the strongest shape. I like to think that with the
three of us together, we can be invincible.
8. Brenda put together a prayer circle chain - hopefully you read about that. It's to give
strength to her cells and strength to me. If you have a few minutes on Sunday night
about 7pm Eastern, 4pm Pacific time, just send us some healing energy in whatever form
works with you. I do believe in the power of that energy and it's ability to heal.
In the meantime, I'm here - just keepin' on. If all goes well, I'm over 1/4 done with my stay
already. And I feel good. Counting all the small blessings!
Wednesday, April 18, 2018
Relapse
As many of you who read this blog know, I have had some difficulties with
my blood levels for several months. After a slew of tests, including two
bone marrow biopsies, the doctors finally found the elusive leukemia lurking
in the shadows.
My first question to my doctor was could this have been prevented. How did this
happen? My sister's marrow never grafted to 100%. It got as high as 99% in the fall
when I was feeling great. No one knows what caused my platelets to go awry. It
was not the disease then. But over the past four months, nothing at all has pointed
outright to a relapse. And even after this latest bone marrow biopsy, it took the
pathologist several extra days to find it.
Bottom line - this disease sucks. I hate it. I hate it with every single fiber of my
being.
So now what?
I go back into Penn on Thursday the 19th for another month long stay. I will start
chemo on Friday. Then, on April 30th, I will finally get my Blast of Brenda Booster™.
The docs are hoping that will help the transplant finally get up to 100% as well as
bring my numbers back to a normal range. The goal is to get out of the hospital in
a month.
IF the chemo works and kills all of the leukemia and IF the BOBB™ works and the
graft gets to 100%, then this can be a cure.
This is what I need from everyone out there - as many prayers, or good energy, or positive
thoughts as you can send me. I will be greedy and take it all.
And how am I doing? Right now, I am feeling
all of the "D"s:
Despair
Despondancy
Disappointment
Depression
Depleted
Deflated
I don't feel like a warrior right now. I don't feel strong. I feel like I want to put my head
under the covers and stay there until someone waves a magic wand and makes it all go
away.
But that's not how life works, is it? I still can't figure out why some people are hit with so
much and others are not. But this is the hand I was dealt. It's not fair. But I have to be
grateful for a good team of doctors and a possibility of beating this.
If anyone wants to help out my family, you can contact The Hubs. I'm sure gift cards to
Zoes Kitchen, Wawa, Dominos, etc, would be appreciated by him. He and the kids have
a month without me, so rides might be needed. Extra support and understanding for all of
them will also go a long way. This is hard on me, but it's hard on them too. Harder, I
sometimes think.
As for me, it's another month in the Penn - but luckily no isolation. Just a regular room where
I am free to come and go as I please (as long as I'm masked up). Horrible hospital food for
four weeks or so. And hopefully an attitude change. I need to get positive and stay positive.
Easier said than done.
my blood levels for several months. After a slew of tests, including two
bone marrow biopsies, the doctors finally found the elusive leukemia lurking
in the shadows.
My first question to my doctor was could this have been prevented. How did this
happen? My sister's marrow never grafted to 100%. It got as high as 99% in the fall
when I was feeling great. No one knows what caused my platelets to go awry. It
was not the disease then. But over the past four months, nothing at all has pointed
outright to a relapse. And even after this latest bone marrow biopsy, it took the
pathologist several extra days to find it.
Bottom line - this disease sucks. I hate it. I hate it with every single fiber of my
being.
So now what?
I go back into Penn on Thursday the 19th for another month long stay. I will start
chemo on Friday. Then, on April 30th, I will finally get my Blast of Brenda Booster™.
The docs are hoping that will help the transplant finally get up to 100% as well as
bring my numbers back to a normal range. The goal is to get out of the hospital in
a month.
IF the chemo works and kills all of the leukemia and IF the BOBB™ works and the
graft gets to 100%, then this can be a cure.
This is what I need from everyone out there - as many prayers, or good energy, or positive
thoughts as you can send me. I will be greedy and take it all.
And how am I doing? Right now, I am feeling
all of the "D"s:
Despair
Despondancy
Disappointment
Depression
Depleted
Deflated
I don't feel like a warrior right now. I don't feel strong. I feel like I want to put my head
under the covers and stay there until someone waves a magic wand and makes it all go
away.
But that's not how life works, is it? I still can't figure out why some people are hit with so
much and others are not. But this is the hand I was dealt. It's not fair. But I have to be
grateful for a good team of doctors and a possibility of beating this.
If anyone wants to help out my family, you can contact The Hubs. I'm sure gift cards to
Zoes Kitchen, Wawa, Dominos, etc, would be appreciated by him. He and the kids have
a month without me, so rides might be needed. Extra support and understanding for all of
them will also go a long way. This is hard on me, but it's hard on them too. Harder, I
sometimes think.
As for me, it's another month in the Penn - but luckily no isolation. Just a regular room where
I am free to come and go as I please (as long as I'm masked up). Horrible hospital food for
four weeks or so. And hopefully an attitude change. I need to get positive and stay positive.
Easier said than done.
Friday, April 13, 2018
A Good Cause - Save a Life!
While I have been busy with blood treatments every week, my dear friend,
Jen, has been busy with a fundraiser for Be the Match, one of the two main
marrow banks that helps match patients with donors. The other bank is Gift of Life.
Both of these bone marrow banks have saved thousands of lives.
Jen will be participating in a race on April 14th at the Philadelphia Naval Yard.
Sadly, I was hoping to go with
her, but because of my current position, have no energy to even walk around the
block. But I will be supporting her anyway!
You can help out in one of two ways - donate money on Jen's homepage (link
below) or contact one (or both!) of these organizations. It only takes a simple
cheek swab to get your data into the bone marrow bank. There are age restrictions
so check with the websites before you set up an appointment.
I was extremely lucky that I had a sibling match. But there are many, many people out
there that do not have that privilidge. Help out others if you can!
I thank you from the bottom of my heart. My marrow thanks you too!
Jen's fundraising homepage:http://www.bethematchfoundation.org/site/TR?px=4571885&pg=personal&fr_id=4158&s_locale=en_US&et=eWEVuU9De0DILTDYZMvcxg&s_tafId=25388
Be The Match: https://bethematch.org/
Gift of Life: https://www.giftoflife.org/
Jen, has been busy with a fundraiser for Be the Match, one of the two main
marrow banks that helps match patients with donors. The other bank is Gift of Life.
Both of these bone marrow banks have saved thousands of lives.
Jen will be participating in a race on April 14th at the Philadelphia Naval Yard.
Sadly, I was hoping to go with
her, but because of my current position, have no energy to even walk around the
block. But I will be supporting her anyway!
You can help out in one of two ways - donate money on Jen's homepage (link
below) or contact one (or both!) of these organizations. It only takes a simple
cheek swab to get your data into the bone marrow bank. There are age restrictions
so check with the websites before you set up an appointment.
I was extremely lucky that I had a sibling match. But there are many, many people out
there that do not have that privilidge. Help out others if you can!
I thank you from the bottom of my heart. My marrow thanks you too!
Jen's fundraising homepage:http://www.bethematchfoundation.org/site/TR?px=4571885&pg=personal&fr_id=4158&s_locale=en_US&et=eWEVuU9De0DILTDYZMvcxg&s_tafId=25388
Be The Match: https://bethematch.org/
Gift of Life: https://www.giftoflife.org/
Sunday, March 25, 2018
Life Interupted
We just dropped my daughter off at the airport yesterday for a school sponsored trip to Ireland and Scotland. A few months ago, I had started looking into a short trip to Iceland while she was gone.
That was before. Before the low blood counts. Before the Grand Fatigue. Before my twice weekly visits to the chemo chair for platelets.
I would love to just plan a day trip. Anywhere.
But I am still very much in the same postition I was in a month ago - low counts, especially
platelets. Low energy. A bit of a low mood.
I just started a new treatment last week that may or may not help to bump up those counts. Time will tell. I had to start the treatment, which is a pre-leukemia medication, because there were a few
abnormal cells in my bone marrow. Docs don't like abnormal. This treatment is supposed to get rid of them. That's good. I don't want them either.
The thing that would really help me is Blast of Brenda Booster™ but the docs still have not decided on that yet. I went through a slew of testing a couple of weeks ago. I was convinced that my lymphoma was back (it's not). I also had an echocardiogram (heart's fine) and an endoscopy. It's the endoscopy that's gumming things up. There is confirmed GVHD in my stomach. So if they do BOBB™, they might aggrivate things. I should know for sure what the final decision is sometime next week.
In the meantime, I just drag myself around. I am on call at all times - do I need blood products? Do I need to go for any testing? Do I need to see anyone anytime? I drop everything and go. It's hard to make plans living this way. Not that I have the energy right now for plans. I have to carefully map out my day - when can I accomplish things? When will I have the most energy?
I hope by the next post, things will have improved. I'm coming up on a year post-transplant (May 3rd!) and I would love to share some good news by then!
That was before. Before the low blood counts. Before the Grand Fatigue. Before my twice weekly visits to the chemo chair for platelets.
I would love to just plan a day trip. Anywhere.
But I am still very much in the same postition I was in a month ago - low counts, especially
platelets. Low energy. A bit of a low mood.
I just started a new treatment last week that may or may not help to bump up those counts. Time will tell. I had to start the treatment, which is a pre-leukemia medication, because there were a few
abnormal cells in my bone marrow. Docs don't like abnormal. This treatment is supposed to get rid of them. That's good. I don't want them either.
The thing that would really help me is Blast of Brenda Booster™ but the docs still have not decided on that yet. I went through a slew of testing a couple of weeks ago. I was convinced that my lymphoma was back (it's not). I also had an echocardiogram (heart's fine) and an endoscopy. It's the endoscopy that's gumming things up. There is confirmed GVHD in my stomach. So if they do BOBB™, they might aggrivate things. I should know for sure what the final decision is sometime next week.
In the meantime, I just drag myself around. I am on call at all times - do I need blood products? Do I need to go for any testing? Do I need to see anyone anytime? I drop everything and go. It's hard to make plans living this way. Not that I have the energy right now for plans. I have to carefully map out my day - when can I accomplish things? When will I have the most energy?
I hope by the next post, things will have improved. I'm coming up on a year post-transplant (May 3rd!) and I would love to share some good news by then!
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