Jun 22, 2016 Latest post:
Jul 10, 2016
Here's a brief summary of Judy's NOT so excellent adventure (I will use mom/Judy throughout - they are the same person ;-)
In June/July 2015, while recovering from two surgeries on her detached retina and pneomonia, Judy was diagnosed with Stage 3 non-small cell (some medical term) lung cancer. After recovery from the detached retina was complete (more or less) in August 2015, she began aggressive radiation and chemotherapy treatments for 7 weeks. Radiation 5 days per week and chemo one day per week. She embraced this new chapter of her life with grace, courage and dignity - making it through the 7 weeks of torture in good spirits and with a beautiful bald head (with lots of cute caps). Judy continued her routines, playing her guitar and singing in the Pinebrook band, enjoying a glass of wine (or two) on the veranda with Roy, watching the birds and listening to the bull frogs in front of their "private" lake - and so much more. Yes - my mother is a rock star!
The next chemo regiment was delayed until Judy was feeling up to more poison coursing through her veins (as she put it). She began her second line of chemo on February 24, 2016. This may be when the "NOT" so excellent part began. This was a long session of chemotherapy, so lots of "good" poison that should have killed the "bad" cancer. But - Judy, ever the overachiever - decided to experience most of the side effects of the chemo. After a blood clot in her leg in March landed her in the hospital - she couldn't stop there, she went for blood clots in her lungs - landing her in the hospital again. Just when she thought it was safe - one day out of the hospital - on March 19th, she landed back in the ER, this time with perforated diverticulitis ("fondly" referred to as a colon blowout). The damage to her colon and stomach was significant and they had to give her a colostomy. This nearly took her out - but she bounced back - and by bounce, I mean she spent 1 week in the hospital (mostly in ICU) and 4 weeks in a nursing/rehab facility (she "fondly" refers to as "the pen"). She rallied and made it back home. That of course delayed the chemo further.
Back to the oncologist (Dr Reddy) in May - after a PET scan, it was discovered on May 31st that Judy's lung cancer had progressed to Stage 4, with a tumor forming outside her right lung, attached to her rib cage. At Stage 4 they recommended a new form of therapy called immunotherapy. Less evasive than chemo, this was very much a bad news/good news scenario. June 6th was the first immunotherapy treatment and it seemed to go well with no apparent side effects. While I was visiting the following week, I noticed that her tummy seemed more bloated than usual. She was complaining of a pain around her stoma (colostomy), but it didn't look like anything was wrong, then I noticed the big bulge under her stoma - turns out she has a parastomal hernia under her stoma - again with the overachieving! Docs recommended surgery on the hernia (which couldn't be done until the surgeon returned from vacation on July 9th), to continue with immunotherapy, and then maybe more radiation (appt with radiologist was scheduled for June 29th).
Then the pain in her back started from the tumor on her rib cage. This started the slippery slope of pain meds. When I returned on Sunday, June 19th, she was extremely loopy, a bit high on pain meds and then began complaining about stomach pains. We got mom to the ER, concerned that the hernia was causing some serious problem. Turned out to be severe constipation - but they kept her overnight to regulate pain meds and make sure everything was OK. The next day, she was more alert and seemed a bit more herself. Then the doc indicated that some of the loopiness may be more related to the disease spreading to her brain. The doctor scheduled a consultation with palliative care (a team of healthcare workers, nurses, doctors and aides, that work with the patient to manage pain and provide comfort - generally in hospice, but may begin while going through other treatments).
We had a very emotional discussion with the palliative care nurse. She asked mom what she wanted - she said she was tired of all the rules, she just wanted to enjoy her life and have a glass of wine and not go to the hospital anymore! The nurse said that she was going to say a word that some people find scary - "hospice" - and mom immediately said, "That's what I want, hospice!" She appeared to be lucid at that moment. I brought forms home for Roy and I to review/complete. We went back to the hospital to make sure mom still agreed, and several tears and tissues later, she signed the form. Dr Reddy (oncologist) came by a few minutes later and we had a good talk. He too felt that mom's disease was winning and that further treatments would not likely make a difference. He asked her what she wanted to do and she said she wanted hospice. He agreed to continue to be the doctor on the palliative care/hospice team and gave us a hug, and we used the remaining tissues from the Kleenex box :)
Roy and I went back to the hospital the next morning (June 21st) and met with the hospice nurse to discuss the process and mom's needs at home. We arrived back home on the 22nd and met with the hospice care team and then our nurse (Cathy) the following day, to discuss her specific needs for hospice care. I plan to stay as long as possible to help out, and we will try to continue with care givers as needed to fill in the blanks and to give Roy (and me) breaks and opportunity for sleeping. Mom is so happy to be home. She is a fighter and she always surprises me when I think the cards are stacked against her. There are people who have "graduated" from hospice. I don't know any of them, but I hear it's possible. Mom's cards are stacked pretty high, so in my totally non-medical opinion, I don't see a graduation in her future. I do see peace, home, family and good friends here to see things through.
Thanks for your support during this very challenging time. Mom would love to have visitors - I will post some contact people for setting up visits so that it isn't too overwhelming. Look for a Journal post with that information.