Saturday, December 14, 2019

Here we go again, again, again


I guess each time I can just repost what I wrote at the beginning of the last recurrence, "Things have been quiet for a few years, but now I'm dealing once again with this ovarian cancer.  I don't see it as a life sentence, rather a chronic disease which I'll probably have to deal with the rest of my life. "  It's been 2 years, 2 months since the last one was diagnosed.  Not as long as before, but still really pretty good.  I'll take it!  I had been taking a daily parp inhibitor called Zejula, or Niraparib, which may have helped with the time span. 

In the meantime, here we go again.  Ca125 went up to 12 which was still well below 35 which is considered the "normal" upper limit.  Retested a month later and it was 45.  Shit...  Did a scan, which found some masses in the same place as last time, between my liver and kidney.  Last time was in the Morison Pouch, this time in the Hepatorenal Fossa.  (Maybe it's the same?) A 2cm mass and a series of things described in the report as an "increase in size and number of soft tissue nodules in the hepatorenal fossa, now crawling along the capsule of the right hepatic lobe."  My oncologist said that radiologists are the poets of the medical field!  Last week did a biopsy.  Not really to see if it's cancer since we knew it was, but to gather genetic info to use for future treatments.  I was accompanied once again by Melanie, who really went above and beyond since we hit rush hour on both side of my appointment!  Wasn't thrilled with my care this time around.  Many little things, but the ones that bugged me the most was when the nurse asked me which size needle she should use to access my chest port.  !!  Her not knowing this did not instill confidence.  One of the doctors who had introduced himself to me a few minutes before came by and asked how I was feeling and that I'd be discharged soon.  !!  Also did not instill confidence.  Then when I was ready for the procedure, on my stomach in the CT scanner tube ("superman pose"), I could hear voices which I figured out was the doctor who thought I was a different patient earlier, talking to another doctor.  Then felt things on my back, so I quickly let them know- HEY, I AM NOT SEDATED YET!  Turns out they were just marking my back with a pen, but they could have let me know first, and could have said hello...  It was pretty upsetting.

Now on to treatment.  My oncologist is recommending chemo without surgery or radiation.  I am pretty stressed about this since my bone marrow doesn't seem to like chemo.  I pushed back on this decision a few times, but they had a good reason for it- that since there were multiple spots this time, there's likely microscopic bits too, and chemo will help get rid of them.  I made an appointment for a second opinion with UCSF, but it's not until the end of February.  Which by the way makes no sense to me!

So, chemo- carboplatin, doxil and avastin.  Only once a month though, starting this Tuesday.

5 comments:

  1. Yikes, wondering if you can get an spot faster at UCLA? Why is it that the options end up being which evil adverse effects do you prefer? All I know is that having those brown jeans I’m thinking about you all the time. I guess the pivot to chronic condition is keeping your voice and spirit in command. Big hugs and beams of love aimed right at you Rachel

    ReplyDelete
  2. UCLA has some interesting studies on OC going on. Definitely keeping my eye on them, but too far for treatment. Hugs and love received, thanks for that! :)

    ReplyDelete
  3. hello Annabelle just now reading this. I’m so sorry that you were going through this again and again. But you have the best attitude which is the best medicine. I know these doctors can have horrible bedside manners. But hopefully they are super smart and knowledgeable in the medical field and that is sucking up all of their social skills. !!! Love you and I’m so happy we spent some chill out time this summer. When this is all finished we will have to do that again. More relaxing with goats will happen in our future. XOXO love and hugs

    ReplyDelete