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!
Friday, April 27, 2018
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/
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