Okay - this is a lie. I actually cannot review 2017. At all.
There is just too much there that I don't want to think about.
Too much happened. Too many dark places to go. Or not go.
So instead I am going to focus on something that came to me the
other day as I sat in the infusion chair getting platelets.
(Update on my platelet issue - the prednisone is not doing what it is
supposed to. That's actually okay. It means two things - one is that I
will be receiving a different, hopefully successful treatment in two weeks.
The second thing is that I will then be weaned off the pred. Hooray!)
What I realized is that the real heroes of this past year have been all of you out there
that have done so many random acts of kindness for others.
Anyone of you who has donated blood, platelets, swabbed a cheek for
the bone marrow bank - thank you! Not only have you kept me alive and
going, but you have helped so many other people out there. And what
I think is most amazing is that most of you did this without knowing who it
would help. Or in what circumstances. It was giving of some of your own
life sources to help someone else in need. That is an amazing thing. The fact
that today's science can do that is also an amazing thing.
2017 has really beaten me to the ground. I am too nervous, anxious, scared, frightened,
etc to have any resolutions for 2018. I do know that I have a bar mitzvah to plan. I
intend to be there and have a great time.
But the bottom line is, I could never have survived 2017 without every single one of you -
whether you just read this blog, or gave me a hug, or a phone call, or an email, or just prayed for me. If you donated blood or platelets or your bone marrow. I am here because of you.
You are all my heroes.
Sunday, December 31, 2017
Friday, December 15, 2017
The Dreaded Pred
One of the big risks for bone marrow transplants is something called
Graft Vs Host Disease (GVHD for short). I have mentioned it before.
It's a host of all kinds of terrible things that can go wrong - your body
basically attacking your body.
I have been very very lucky so far - I have some mild GVHD in my gut, which
has been controlled by a special steroid that is only absorbed through the
digestive system and does not have those Bad Steroid Effects.
Until now.
In October, my docs started weaning me off of my immunosuppressant drug.
One of the jobs of that drug was to keep GVHD in check. I have been waiting
for something to happen. A rash. Bigger stomach aches. Liver issues.
Instead, I have been watching my platelet count go slowly, slowly down. To the point
where I am now critical. Hooray. I am full of bruises and bleed easily.
The docs are pretty sure it is something called ITP. It has a long latiny name which
basically translates to "Your new bone marrow is making platelets. AND your new
bone marrow is looking at those platelets and is thinking they are foreign and is
attacking them". Well. Isn't that a lovely thing?
Good news - there is a cure. Actually, there are three types of treatments. But the first
and easiest is to go on Predisone. Yuck. Not my drug of choice. I told the doctor that
it makes me psycotic and anxious. I'm already taking some medication for anxiety.
We are trying it anyway since it is usually a pretty quick fix. The point is to reset the
system and calm down the bone marrow so that it sees that platetets are Good Things.
Not Bad Things.
The other two treatment options are infusions - one of immunoglobins and the other a
type of chemotherapy that is often used for auto-immune disease. I am hoping I don't
need either one of those because. Well, just because. I don't want an infusion. I don't
want to sit in the "chemo chair".
It's a bump. A relatively small bump in the grand scheme of things. But it does mean that
I will be keeping my PICC line a bit longer than I thought. I was hoping to get rid of it
in a few weeks but it will have to stay while they make sure everything returns to normal.
So if I seem snippier than normal, or more anxious and crazy than normal, just blame
it on the pred. In fact, I may not tell anyone when I come off of it, and use that as an
excuse from now on!
Graft Vs Host Disease (GVHD for short). I have mentioned it before.
It's a host of all kinds of terrible things that can go wrong - your body
basically attacking your body.
I have been very very lucky so far - I have some mild GVHD in my gut, which
has been controlled by a special steroid that is only absorbed through the
digestive system and does not have those Bad Steroid Effects.
Until now.
In October, my docs started weaning me off of my immunosuppressant drug.
One of the jobs of that drug was to keep GVHD in check. I have been waiting
for something to happen. A rash. Bigger stomach aches. Liver issues.
Instead, I have been watching my platelet count go slowly, slowly down. To the point
where I am now critical. Hooray. I am full of bruises and bleed easily.
The docs are pretty sure it is something called ITP. It has a long latiny name which
basically translates to "Your new bone marrow is making platelets. AND your new
bone marrow is looking at those platelets and is thinking they are foreign and is
attacking them". Well. Isn't that a lovely thing?
Good news - there is a cure. Actually, there are three types of treatments. But the first
and easiest is to go on Predisone. Yuck. Not my drug of choice. I told the doctor that
it makes me psycotic and anxious. I'm already taking some medication for anxiety.
We are trying it anyway since it is usually a pretty quick fix. The point is to reset the
system and calm down the bone marrow so that it sees that platetets are Good Things.
Not Bad Things.
The other two treatment options are infusions - one of immunoglobins and the other a
type of chemotherapy that is often used for auto-immune disease. I am hoping I don't
need either one of those because. Well, just because. I don't want an infusion. I don't
want to sit in the "chemo chair".
It's a bump. A relatively small bump in the grand scheme of things. But it does mean that
I will be keeping my PICC line a bit longer than I thought. I was hoping to get rid of it
in a few weeks but it will have to stay while they make sure everything returns to normal.
So if I seem snippier than normal, or more anxious and crazy than normal, just blame
it on the pred. In fact, I may not tell anyone when I come off of it, and use that as an
excuse from now on!
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