Pretty Quiet Here

No signs of side effects. They gave me platelets yesterday (count was down to 8). I am feeling okay, except for the bone pain.

They administer the neurological test 4-5 times a day. Part of the test is writing a sentence. Any sentence. Whatever comes to mind. I’ve done the weather, Kensley, etc.

But tonight when they woke me up to check my vitals they administered the test. Write a sentence, hmmmm… this is what I came up with: “The rain in Spain stays mainly in the plain.”

After the nurse left I racked my brain to remember where that came from: My Fair Lady. What?? I passed the test but I think I may be going a little crazy! Nine nights in a hospital with no visitors allowed.

But seriously, I’m fine. What will I come up with next?

Today’s the Day

Everything looks good to get the CAR-T cells today. White blood count is sufficiently dismal to make room for the CAR-T cells to move in and proliferate. And I’m getting some extra fluid for my slightly low blood pressure.

I passed my baseline neurological test with flying colors (now I sound like our former president). I asked them if I started to not do as well would I notice or would still think I was doing fine. They said I wouldn’t notice and they would still tell me I was doing great! I found this comforting. They also said neurotoxicity in myeloma patients getting CAR-T is not very common (but possible).

The cells are currently being thawed in a water bath and I should get them early this afternoon. It is somewhat of a non-event, but the attending did say congratulations on his way out 🍾

The nurse asked me last night if I wanted my cells blessed. This took me aback. And then I received some beautiful words from some friends and know that I am already blessed.

“Hope sees the invisible, feels the intangible and achieves the impossible”. Anonymous

May each cell be the hope we can’t see but believe will be the cure.

I bless you, and all your cells; I bless the cells you are about to receive; I bless the minds and spirits, and brains and bodies, and spirits of every person, and every energetic and vibrational presence involved in this process.

Finally Moving to the Next Step

The IRB approved my protocol. Now the protocol needs to be posted and printed and then Dr. Munshi will come over and consent me and then we can start.

The chemo is a 2-drug regimen. The first day I’ll get both (which is standard) and then apparently there’s some wiggle room for days 2 and 3.

The goal of this chemo is to move out all of my lymphocytes to make room for the re-engineered ones (CAR-T cells) which will proliferate.

They will watch my platelets (currently 12) and hematocrit (currently 23.4) and supplement with transfusions as needed.

I am about 90% sure we’ll start today, but it’s 10:30 and the clock is ticking…

I am so grateful for the love and support that continues to come my way. Thank you, thank you, thank you.

Not proud

I am not proud, but I did manage to get Smilow to have me start treatment tomorrow (Monday). I did happen to cry on the phone after they told me they were having trouble getting me an appointment. Mind you, they didn’t call to tell me that, I had to call them. It was at the end of the call, and I couldn’t help myself, I had to say something. “You know, it isn’t stressful enough to have cancer, and then I have to deal with this.” That’s when I started to cry. And, no, I am not proud, but I also don’t think it should have to come to that. Within the hour I had a message saying that I was on the wait list for treatment on Monday (this was Wednesday).

So, good, I was on the wait list. I asked if they had started the process of ordering the revlimid. They had not, I have to have a pregnancy test first. I wrote back “If you put the order in I will go take the test.” Really?  You’ve known I was supposed to start this treatment for three full working days and you didn’t get this started? It has to be ordered from a specialty pharmacy and overnighted to me. They write back and say the blood test orders are in. I go and get the blood work done.

Thursday goes by. And then it is Friday afternoon. I have heard nothing, which at this point is no surprise. I have somewhat resigned myself to the fact that I will not be starting treatment. I send them a message saying I assume since I have not heard anything I will not be coming in. (They told me I was wait listed but never explained what that meant.) I get a message back “You are scheduled for 2:00.” Well, thanks for letting me know! I ask again if the revlimid has been ordered, the response “The Hcg isn’t ready yet, when it is we will order.”

So, I happen to have two revlimids left over, which I will start to take tomorrow night. And I don’t think much about it, and wasn’t sure what the Hcg was. I was actually mixing it up in my mind with another test. But then Saturday night I look it up, and of course it is the pregnancy test. They are saying that a pregnancy test that I took Wednesday afternoon is not resulted by Friday afternoon? That is crap.

This experience with Smilow is crap. I sometimes blame it on the fact that they are not acting as the lead for my treatment, but I am not entirely sure if that is the case. And now I am a little bit embarrassed to show up there tomorrow afternoon being the woman who cried on the phone last week, But maybe they should be the ones who are embarrassed.

Day +11

I’m coming home tomorrow (Sunday)!

My WBC count multiplied by 6 up to 1.45. And my absolute neutrophil count (ANC) which had been non-existent and needed to be 500 for me to leave was 1200 this morning!

There is a little bit of a glitch with my home medications but everyone here is doing everything they can to work it out. 

I just had another reiki session and I’m waiting on the arrival of my mom and my brother for their visit. Scot comes tomorrow morning to take me home two days early!!

I am also anxiously awaiting the Hickman line removal. 

I have some more “training” to do before I can leave. It is a tiny bit frustrating because there are some inconsistencies between sources of information in regard to the long list of limitations I will have for the next 30 and also the next 90 days. But never fear I will get it all sorted out, with the assistance and of course the nagging of my great care team at home.