8/26/2023
Yesterday, Dr. Modi did a 20-sample biopsy of chest lymph nodes under general anesthesia to help determine what the lung mass is. Three nodes had five samples taken from each of them, and the suspicious node (14. mm Hilar node) had 10. Preliminary diagnosis: Bilateral hilar lymphadenopathy; Mediastinal adenopathy (node enlargement);10L (hilar): suggestive of malignancy. (Final results are pending). My sites are all considered "highly metabolic" meaning the cancer is spreading as fast as possible for cancer to spread. Time is really short to address this. Meanwhile, I still haven't been assigned a responsible MD Anderson home oncologist while everyone is waiting to see what flavor it is.
How are we coping?
First, I should point out the bright side: I had a fun dinner out with Kevin and a couple friends, followed by a night playing cards with other friends. But honestly, “fun” is a kind of relative word right now because everyone is aware of the cancer and my refusal talk specifics about it (except in this Friday update), so it does put a certain pall on our time together. That, and the ongoing pain in my abdomen and my obvious loss of interest in banal conversation, which is about all I can tolerate, unfortunately.
Even harder, I've really been depressed about not knowing that our last trip "home" to Madison and Chicago, where I lived out most of my adult life, would likely be my "last trip home" and maybe my last time to see my children. Brook is a Chicago detective; she can't just hop on a plane when she's working a homicide -- and when is she not? Summer is the CEO of the Great Lakes Mother's Milk Bank which supplies 90 hospitals with breast milk for high risk infants. She audits the other banks in the nation and speaks internationally at conferences, since she was one of the founders of the Chicago/Madison area collection/pasturization/distribution center. Her specialty is molecular biology and she has a Master's degree in nursing and so is helping me remotely through this. PJ is a home-health aid with a paraplegic client dependent upon him the last several years for consistent care. They have their lives and responsibilities and boys to finish raising.
But Kevin has really gone way above and beyond in keeping me comfortable and as involved in my former life as possible. We shipped out the last of my personal items for the kids – things I wanted them to have -- so now they have everything except my books, computer, and clothing, so I’m happy about that. Kevin has my art pieces; he wants to keep much of it, he says. Summer needs a bigger house while she figures out what to do with all the craft goods I sent to her to divide with Brook, PJ and the grandkids.
This last week was really frustrating again with more stupid medical cracks. Kevin took a morning off work to take me downtown to another Baptist Hospital building (it’s a huge complex) for a “Pre-anesthesia meeting” which could easily have been done over the phone, and an EKG (which could have been performed when I had my blood taken the day before). Before this dumb meeting, I first had to download, print, and fill out a lengthy form with info already in my online chart. What a waste of time, I thought – just another billing opportunity. Then yesterday, when we got to the surgical registration area, guess what? The other office didn’t send over that silly form as required, so …. They handed me the same lengthy form to fill out again. I was STEAMED but I tried to be nice to the clerk (Kev said I was marginally successful) and filled it in AGAIN. EVEN THOUGH EVERY BIT OF IT IS ALREADY IN MY ONLINE MEDICAL CHART THEY CAN DOWNLOAD WITH THE CLICK OF A BUTTON.
Then, right after surgery when I’m still mentally out of it, someone from Dr. Robert Zaiden’s office called. He is the GI oncologist who I have been anxiously waiting for three weeks to see about the painful mass in my abdomen and how to get it OUT. His clerk (I barely remember the call) said the doc didn’t think he could help me, after reviewing my file. So, the appointment for today was cancelled. I’m no closer to getting this “appendicitis pain” resolved than I was in July when I first went to a doc for it.
Now I’m mad because I was only given 1 week of the anti-anxiety medication (since I can't seem to get in to see a psychologist, this is MD Anderson's solution), as if I’d magically be better in one week with dealing with no appointment with an oncologist, no treatment plan, continuing pain, and survival uncertainty. I made the prescription last 2 weeks, by being anxious only half the time, but it helps me sleep nights. So, I just called and begged for another week’s refill, which was hard because my throat hurts and it sounds like I’m crying (when I’m not) due to the bronchoscopy after-effects which includes almost constant coughing. And I haven’t taken an anxiety pill today BECAUSE I’M OUT!
Next week, I’m sure I’ll be all positive again, so don’t worry. This depression and anger are situational and transient – I’m sure it’s not my new permanent state of mind. I guess I just needed to vent this week.
So thanks, as always, thanks for being by my side for this misadventure. I’m grateful for your support and I promise to be in a better state of mind next week.