An Unfortunate Update.

Let me see if I can catch everyone up...and YES, before anyone asks…my therapist is constantly on standby at this point. lol

2023 started with my 6th and final chemo treatment on Thursday January 5th.  AH...what a relief that truly was!  Although I did not have a bell to ring...sadly, I honestly felt slighted just a little.  Having that process over was such a relief.  As my Oncologist says, now we wait...  Next up PET SCAN was on February 6th.

WELL...That fucking PET MACHINE let me down AGAIN!

Here were the updates.  We will start with the good news!

Spleen/Liver - They look good, REAL GOOD.  My spleen is back to its normal size, however, it is still NOT functioning like a typical spleen should.  My Oncologist said that I might not ever get any of its use back.  What does this mean in laymans terms...I have to NOT get sick.  lol...easier said than done with FOUR kids in the house.  THIS will be a constant struggle.  Many of my Spleens functions can be done by the Liver, but not all of them.  I had to be vaccinated and revaccinated for several types of things. 

Thyroid – I have had 9 pokes of my Thyroid at this point, also, I will NEVER do that again.  AT this point EIGHT of them have come back “susupicious” for deformed cells, however, they are not able from the samples to pinpoint what Cancer exactly they are.  The NINETH biopsy is going to be sent to a different more detailed lab where they hope to get the actual specific type of Cancer cell.  This test is sometimes not covered by insurance and costs about $4,800.  AWESOME…We now wait…

Ovary –These DAMN Ovaries, I hate them!  On my most recent PET scan, the only presence of Cancer that popped up was in my Left Ovary  In February, it was very, very small.  SO its bitter sweet but I am so very happy that it was caught now before it turned into something larger.  I am also not having ANY symptoms from it at the moment, which is fantastic.  I had a biopsy of the ovary, which was certainly quite the experience in itself, they go through your back while you are under Intervential Radiology’s care.  The biopsy came back last week as Diffuse Large B Cell Lymphoma (DLBCL).  In hindsight, I am glad that it is the same Cancer at least.  Sometimes they can mutate in worse cancers.      

Adrenal Gland – I have a nodule on my Adrenal Gland which they think is benign as there has been no change in it since my first PET scan last year.  Fingers crossed that it stays that way.

Breasts – Last year I had a marker placed in my Left Breast, due to an image that they saw that they wanted to watch.  Then they also saw something in my Right Breast during my PET Scan.  Upcoming mammogram in April to check any progression.  My Oncologist is honestly not concerned with this at all. 

The Future

SO here I sit at Massachusetts General Hospital on the Lymphoma Floor awaiting my “Vein Check” and Echocardiagram for what is next for me.  CAR-T Cell Therapy.  What is this you say…?  It is currently MY ONLY Option now that Chemotherapy did not work for me.  Here is the low down.  Three really tough months that consist of various “transfusions” and Medication to boost my White Blood Cells.  Here is a good diagram of the process.



For all of you Science and Medical Folks, its really state of the art type stuff.  I have also signed up to be in a case study of the administration of a type of drug that is given prior to your infusion that will boost my White Blood Cells for the upcoming transfusion.  The side effects will be intense and I will have to be admitted to MGH for quite some time after the infusion to be monitored for some pretty scary sideffects.  The worse side effect would be Seizures and Psycosis, and then I am unable to drive or be alone for at least a minimum of 60 days.  I also might have to stay in Boston for this time frame as well.  I am meeting with a social Worker to try and find out about the local housing option for people who are over 30 miles away.  It’s been a lot to take in this week and I have been pretty numb about the entire process, however, it is the best option for me at this time. 

SO…Please continue to send your prayers and strength to me over the next few months, I’m going to need it. 

Xo

~m

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