First of all, I got platelets yesterday. They were so low that I was actually considering wrapping myself in bubblewrap for the drive down to Philly. Scary low. They are okay now, but I'll be getting more on Tuesday and Friday. And so on until this is fixed.
So I had my bone marrow biopsy last Friday. And the doctors were predicting one of two outcomes.
1. Making platelets but those platelets were being consumed.
2. Not making platelets.
It is option 3 - the Wild Card. My new bone marrow is weakening it's grip. In October, I was 99% my sister's bone marrow. Now it's 91%. The bone marrow is not making enough cells. Period. Not enough platelets. And now the red cell production is slowing down.
Okay. It's okay. There is a treatment for this. And I hope against hope that the treatment works.
It is: Blast O' Brenda Booster™
I will be getting some T-Cells (little soldier cells) from my sis. Luckily, this does not involve any more surgery for her (whew). She does need to go down and donate some blood. They'll take out the t-cells they need, process it and the same day, give them to me. Hopefully, those little guys will come in and kick my new bone marrow in the ass and get it working again. This can take up to 6 weeks to determine. I will be very closely monitored for that time.
If any of you know my sister, she is a feisty, fighting force to be reckoned with. I hope that this Blast O' Brenda Booster™ will be the same.
Of course, I am having a small pity party that this is happening. Angry that my body is not working like it should be. And so tired of living in the World of Fear and Worry.
But here are the positives:
1. Most importantly, there was NO NO NO Leukemia present in the bone marrow biopsy. I'm still in full remission
2. It looks like this has been caught early
3. There is a treatment and it's not too invasive for anyone
4. I'm off all steroids!! (Hip-hip-hooray for that!)
I will not dwell on the negatives. Even though you all know I will anyway in those dark moments. But I am hoping that this Blast O' Brenda Booster™ works and I will be right as rain very soon.
In the meantime, my PICC line and I will be great friends for at least the next several weeks and probably the next 3 or 4 months. BTW - it's PICC's birthday today. One year ago I got it put in and got the initial chemotherapy that put me into this nice remission. So there's that.
And more importantly, there is a plan and there is a treatment. Sometimes that's all you need to make it through the day.
Saturday, January 27, 2018
Tuesday, January 16, 2018
Up In Arms
I will be very honest. My arms are ugly. Really ugly right now.
Those red spots are called petechiae, and I've been dealing with them since October. They are kind of like bruises. But they don't hurt. My skin is very thin due to some of the steroids I have to take for my stomach. Then the skin gets scratched - either by me, or by the dog, the blood vessels break and cause bleeding right under the skin line. They take a really long time to go away. And usually, just when one patch clears up, I will bump into something and get some more. The fact that I have been dealing with low platelet counts makes the petechiae even uglier than they normally present in people.
All-in -all it's not a bad thing to deal with. Just unattractive. Lucky for me, it's winter.
But looking at them is a constant visual reminder of this past year. It's a "Nope - not normal yet". But I do put heavy emphasis on the "yet". Because I'll get there.
One year ago on Friday, I went into my quarterly oncologist appointment hoping to hear the "all clear" for Non-Hodgkins. It was my 2-year anniversary of being clean, and with Non-Hodgkins Lymphoma, that's the same as going 5 years cancer free. Surprise! It was just the start of a new odyssey.
So on this year's anniversary, I am "celebrating" (ha!) by getting a bone marrow biopsy. My platelets are still not cooperating. So the docs have me on a pretty tight leash - checking my numbers twice a week and checking in regularly. I've had to go in once a week for the past several weeks to get a platelet infusion to keep me out of the critical zone.
The biospsy should show them what's wrong. It's either
1) My bone marrow is making the platelets, but then being overagressive and attacking them. Hey bone marrow! Be a team player!!
Or
2) My bone marrow decided to be lazy and not work hard to make the platelets. Hey bone marrow! Get your act together! Work harder!
The good news is that both things are treatable with medication.
Beating cancer is a patience game. For any kind of cancer - dealing with scars, radiation, hair growing back, strength returning. The word "yet" can become your mantra.
My arms are not normal. My platelets are not normal. I am not normal.
Yet.
Those red spots are called petechiae, and I've been dealing with them since October. They are kind of like bruises. But they don't hurt. My skin is very thin due to some of the steroids I have to take for my stomach. Then the skin gets scratched - either by me, or by the dog, the blood vessels break and cause bleeding right under the skin line. They take a really long time to go away. And usually, just when one patch clears up, I will bump into something and get some more. The fact that I have been dealing with low platelet counts makes the petechiae even uglier than they normally present in people.
All-in -all it's not a bad thing to deal with. Just unattractive. Lucky for me, it's winter.
But looking at them is a constant visual reminder of this past year. It's a "Nope - not normal yet". But I do put heavy emphasis on the "yet". Because I'll get there.
One year ago on Friday, I went into my quarterly oncologist appointment hoping to hear the "all clear" for Non-Hodgkins. It was my 2-year anniversary of being clean, and with Non-Hodgkins Lymphoma, that's the same as going 5 years cancer free. Surprise! It was just the start of a new odyssey.
So on this year's anniversary, I am "celebrating" (ha!) by getting a bone marrow biopsy. My platelets are still not cooperating. So the docs have me on a pretty tight leash - checking my numbers twice a week and checking in regularly. I've had to go in once a week for the past several weeks to get a platelet infusion to keep me out of the critical zone.
The biospsy should show them what's wrong. It's either
1) My bone marrow is making the platelets, but then being overagressive and attacking them. Hey bone marrow! Be a team player!!
Or
2) My bone marrow decided to be lazy and not work hard to make the platelets. Hey bone marrow! Get your act together! Work harder!
The good news is that both things are treatable with medication.
Beating cancer is a patience game. For any kind of cancer - dealing with scars, radiation, hair growing back, strength returning. The word "yet" can become your mantra.
My arms are not normal. My platelets are not normal. I am not normal.
Yet.
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