Serenity Now!

Entry 1 9:42 a.m.

Let me first say that Jenny has, no matter who it is you ask, the best PDAC oncologist there is. Period.  He is like the little French chocolate, non-pariels, of doctors.  That said, yesterday was again a day of frustration for me. I have so much concern for what the doctor said to us, and so many questions.  To raise those issues with Dr. P., who comes off as Moses sans beard, holding his stone tablet decrees, and me down below worshiping a golden calf.  

Jenny's CA 19-9 went up:

The doctor said it went up just a bit, nothing really to worry about. Really, he said, your cancer is stable, "maybe a little worse."  But stable. 

The CA 19-9 numbers are see-sawing, but the general trend is through the roof.  42845.1 U/ml as of yesterday. Baseline, 14 months ago, was 846 U/ml.  So, its 42k higher. Jenny, as is her way, won't look for another week or so, and I, of course, per her wishes, won't share the information with her.

Jenny's CEA, the other cancer antigen is up again as well. It was 11.4 ng/ml on August 12, when it was first measured. Yesterday it was at 26.6 ng/ml.  

According to all the research I have done, just search for CA 19-9 and CEA in this journal, each is an independent prognostic indicator. Each shows that she is rapidly getting worse. So, stable or marginally worse is hard for me to swallow.  

The RN yesterday, who saw us before Dr. P said that Jenny's hemoglobin count was so low, it was at 8.2 g/dl was so low, she didn't know if Jenny would be able to receive chemotherapy.  The low end range, per the med records, is 11.4 g/dl.  Dr. P, whose attitude is almost always, "Damn the torpedoes, full steam ahead," went for it.  Jenny was disappointed, given her friends from NYC are here to see her this weekend. She is going to feel spent for longer than last time, given she is pumping more cytotoxins into her system even as I type. 

Jenny had a lot of questions, which the doctor dutifully answered, and as they were wrapping up, I asked about the pathology report for her biopsy on Sept 7.  He said it wasn't back. We corrected him. I told him we received a full printed copy of the report from the substitute oncologist, but that she had deferred going through the whole document with us because she believed Dr. P should do that. He pulled up what he believed was the full report on the computer as we stood there, told us, as the other oncologist had, that Jenny is not a candidate for immunotherapy, but said the rest of the report had yet to come back.  I knew that not to be true, but given Jenny and everyone else thinks he can part the Red Sea, I just let Moses be wrong without challenging him.  This means that all of the other findings will likely never be shared with her unless I am present. I will not be at the next two chemos, her sisters have volunteered. I told Jenny I'd be happy to go, but she said she wants to save me for scans. Honestly, she cant make up her mind on this, but I'm good with whatever she wants with regard to keeping company at chemotherapy.

Jenny sobbed and sobbed because she keeps expecting the doctor to tell her that the tumors have shrunk, that the cancer is going away. Stability is not welcome in her head. For those of us not sick and currently facing our mortality, we know stability is a gift.  A brief aside--I couldn't sleep last night and was binge-watching the last season of Bosch on Amazon Prime. The police chief met with a man on the police oversight board to ask for his help and he told the chief he couldn't help as he was diagnosed with Stage IV pancreatic cancer. Like anyone not fighting the disease, the chief and the man he was with both got a knowing look in their eyes, and later when the chief was discussing it with his wife, they both knew what it meant. Glad Jenny, who is in denial despite watching her dad die of this, didn't see the show.

Jenny, as Dr. P was leaving, asked how long his longest patient lived with PDAC.  He told her 7 years. This was jarring for her, and for me a hopeful note. As the nurse pointed out later, they are finding new therapies all the time, if Jenny makes it a few years, she may have hope for better treatment, maybe a cure.

Just an aside, Jenny is currently complaining about me on the phone. These vaulted ceilings are like the whisper apertures at St. Paul's Cathedral.  She is upset I am not waiting on her.  I am writing this in-between meetings and other work.  She is angry the kitchen isn't immaculate. There are, I admit, 3 pots and two glasses in the sink that I did not wash last night. But, after getting home from chemo at 7:30 p.m., I did have to go to the store, buy dinner for her because she would not eat the food from meal train. I then came back home, cooked for her, a separate meal for Abby and then cleaned up afterward, minus those things I described. Moreover, the dishwasher is full, but with dishes I ran last night. I was up again at 7, after barely sleeping now two days in a row, taking care of the dogs, making us coffee and now have a full work day in front of me. To hear her complain that I haven't made her breakfast, especially after she declined to have my sister come over today is just too much.  

My therapist chides me, if you are going to do this--stay with Jenny and care for her, you have to do it for yourself, not for her. I keep repeating the mantra, "You are doing this for yourself," like I'm a Soka Gakkai cultist chanting, "Namio renge kyo," or Frank Costanza shouting, "Serenity now!"

I have completed hours of research on the pathology findings. They are sitting here as an unpublished journal entry. I will continue to keep them close to the vest until and unless Jenny gets information from Dr. P.

I was too exhausted and depressed to write last night.  I don't have the energy or motivation to even talk to another human being at this point, even if I wanted to, unless necessary.  

Entry 2     4:51 p.m. 

Jenny's friends are here from NYC. One is  a billionaire (her husband has his own hedge fund), the other married to a very wealthy investment banker.  Jenny is close friends with two billionaires, 2 more than me. They are staying at some posh place, to be sure.  I am upstairs, tired after this long day, with little sleep, and dreading having to go say hello. They are both perfectly nice people, lovely actually.  I just am in no space to be social.