I’m Getting Very Concerned, Lately

8 comments

Upon leaving the cemetery: “Then shall the dust return to the earth whence it came, and the spirit shall return unto G-d who gave it. Peace be with you, all whom death has united in this field, the last home of so many departed ones. Peace be with your souls, which have been recalled by the voice of G-d to eternal life. Amen.

Ezekiel 7, The Old Testament

I’m very concerned. Several important blood results weren’t explained to me – those were just made visible to me so either it’s a good sign meaning the Piqray took care of it or it’s a VERY bad sign of my MBC having spread to my spleen and lungs.

Also concerning is she was not truthful in discussing my baseline CT scan with me prior to my taking Piqray.

Dr. Chew the famous UC Davis oncologist who never did have all the comparison scans about the clavicle node that’s just been there not doing anything since the installation of my port in 2015 or the issue with the scar spot on my lung that hasn’t changed -it was previously determined that I had it from a flu many years ago.

So either I have so little time left I should start really getting my affairs cleaned up and give all my stuff away say goodbye to everyone and live my days out in the Philippines at my exes beach house.

Please explain cytology

Dr Chew was not truthful in discussing my baseline ct scan prior to my taking Piqray and were just made visible to me. Either it’s a good sign the Piqray took care of the problems or it’s a VERY bad sign it’s spread to my spleen and lungs. She did not have all the comparison scans to go by for review and the clavicular node that’s just been there minding its business since the installation of my port in 2015 or the issue with the scar spot on my lung that hasn’t changed -it was previously determined that I had it from a flu years ago.

I’m very upset at that point – with zero communication from UCD I call 2x for results of PET of last Wednesday. I’m very concerned at that point. You see my oncologist took off for the summer to be with her kids all home from school and her covering forgot to call me – admittedly forgot to call me so by now we are well down the road and I know not a fucking thing about what’s going to happen in my body.

Message —– look at the date and please note after begging for months to get another PET SCAN and port installed and the old one that was bowing up into my neck – it’s finally six months later happening. Through what miraculous decision process that took place is beyond my thinking.

From: Josef Micaiah Hannah, DO

Sent: 7/9/21, 1:32 PM

To: Ilene Kaminsky

Subject: stains from ascites cytology

EPITHELIAL ANTIGEN (BER-EP4) Positive

MAMMAGLOBIN Positive

GATA-3 Positive

I have no idea what this means please advise.

I will keep my service work going because it’s keeping me out of the dumpster. I’m not giving up, throwing in the towel or giving my life to incompetent criminals. That just won’t happen. I did slip in the bathtub and nick a tiny rib. Good enough excuses for a self a check in to the hospital tomorrow too.

And here I am laying in my bed, tears running down my face and not knowing how my PET scan will light up like a perfectly timed Christmas tree, or if it will be normal or something like that where I can start my next round of IV chemo on taxol for six months beginning on December 13th

It seems like this is the time of year for me to light up some impossible Jew as one of the Macy’s’s day parade floats only this year at 125 lbs -40 lbs under weight.

Stay tuned. I don’t know where I’ll lay this time next week but what I do know is I refuse to find myself in pain, without much meat on my bones – the only upside there is a will and it’s my way.

NEVER GIVE UP HOPE. It’s kept me on this earth in this holy body for far longer than initial predicted. I’m okay with it.

But then again fish don’t need bicycles and no one needs this long, killer cancer that could have have an immediate impact on my time here. Yet I haven’t known if it’s at all worth it for some time since my marriage to someone I once could count on to get me a glass of ice water, a bowl of ice cream or a ride to the hospital.

I’m tired of bad news. Get your prayers and your love out – and I’ll keep you posted on what’s up. This is no picnic but I’ve been waiting here on this road for a fellow long term unicorn to join up with me and run free a bit. It’s just deep out here in the country I seem to be getting further from the human race. It’s a race with time now. I haven’t had it move in my direction for a while. I guess it’s safe to say please send me a little time and a lotta optimism now for I need it most as I will send you the same in return.

Promise.

8 comments on “I’m Getting Very Concerned, Lately”

  1. Oh, Ilene! I missed this terribly upsetting post. I am so sorry you’ve been going through such torment. Today is Monday, the 16th. I’m keeping you close to my heart and hope you’ll soon get answers.

  2. If be concerned if I could not see my test results soon after a test, and then see my doc for her input. Time for a new doctor! I learned this the hard way.

  3. Ilene – I agree with the others that a second opinion is in order. And disturbing that you have not gotten a response to you questions.
    Check out this article – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5923363/
    Though it refers to tests you use to classify origin of cancer from unknown origins, it mentions the tests you had done on the ascites and what they refer to.
    They are diagnostic markers
    EPITHELIAL ANTIGEN (BER-EP4) Positive – papillary serous peritoneal carcinomas
    MAMMAGLOBIN Positive – breast cancer
    GATA-3 Positive breast cancer recurrence likelihood
    Sending you hugs

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