Oh, God. Oh, God. My hair. My hair! The government gave me bad hair!

Cordelia ,'The Cautionary Tale of Numero Cinco'


Goodbye and Good Riddance: Hey, at least you didn't get a Peloton. (2019)  

Take stock, reflect, butch, moan, vent. We are all here for it.


Shir - Jan 04, 2020 3:04:11 am PST #99 of 140
"And that's why God Almighty gave us fire insurance and the public defender".

Thanks, Calli! Good to know.

Debet, I got your card yesterday. It's lovely to see all of your faces!


DavidS - Jan 04, 2020 7:32:09 am PST #100 of 140
"Look, son, if it's good enough for Shirley Bassey, it's good enough for you."

Final item, and the biggest one, was the American vacation.

It was so great to see you and meet Biyi and Ryan. Loved that!


amyth - Jan 05, 2020 5:43:01 am PST #101 of 140
And none of us deserving the cruelty or the grace -- Leonard Cohen

Lots of love and ~ma to all of you. So much wonderful and stressful in here! I love us and I'm so glad we have each other. I always wish I were more than a sporadic poster at times like these. Unfortunately, I may continue to be a sporadic poster until I get my feet under me with all the changes that have happened to me at the end of this past year. 2019 was a big year for me. For those of you who saw my Natter posts in November and (maybe?) December, you are aware of the Big Surprising and Bad. But 2019 was a big year for me before all of that happened, so I'll try to sum up:

The beginning and middle of 2019 were actually great for me. I felt like I was really coming into my own as a Middle-Aged Lady (or whatever), forgiving myself for past mistakes that I had held onto for decades (like failing out of college when my mom was diagnosed and died of a blood cancer—ironic!—my freshman year, and taking ages to get my undergraduate degree, and lying about it/hiding it from everyone I knew for a long time out of fear and shame). I finally forgave myself for not being able to "save" my father from slowly committing suicide after my mom's death because he couldn't live without her. But you all were with me through all of that. (Or as much as I could bring myself to post about.)

Point is, I was happy. I was doing really well at work, I applied and got into grad school. I had A Plan. And then on Nov. 6th, I found out I had leukemia (T-cell Acute Lymphoblastic Leukemia, to be precise) and was told to check into the hospital two hours later. So, I had to let everything go—The Plan, work, grad school, my life, basically, and become a full-time patient. I didn't leave the Oncology floor again for six weeks. It's a really aggressive cancer so they started chemo right away. And I'm in round 3 of 8 right now, so this is a long haul, with more to come after that—consolidation and maintenance therapy to prevent relapse, maybe a bone marrow transplant, I don't know. For those of you who saw my Natter posts, the outpouring of support from Buffistas and IRL has been amazing and overwhelming and that's an understatement.

dcp, like you, I had my first port fail, but I got a second one that I'm hoping will work. I also got an infection that gave me aphasia where I couldn't talk or type for several days, which was really scary. I also had a subdural hematoma that may or may not have been caused by the spinal chemo they give me on top of the IV chemo I get. But I'm still here! I am trying to be more resilient about the unexpected because these things are just as much about this long journey as the everyday stuff, and I'm trying to get back to being the person I was when I first posted—strong, wanting to fight this disease aggressively, (and also in a little bit of denial/shock, lbr). But I can't access that strong version of myself every day.

I am so grateful you all are here and have my back.


Laura - Jan 05, 2020 1:46:16 pm PST #102 of 140
Our wings are not tired.

Your strength and courage through this has been incredible. The family here has been supportive to me and I am so grateful. Don't hesitate to reach out when you need support.


SailAweigh - Jan 07, 2020 5:43:57 am PST #103 of 140
Nana korobi, ya oki. (Fall down seven times, stand up eight.) ~Yuzuru Hanyu/Japanese proverb

amyth, thank you for the pretty card! Shiny!


dcp - Jan 07, 2020 3:37:12 pm PST #104 of 140
The more I learn, the more I realize how little I know.

amyth,

...aphasia where I couldn't talk or type for several days, which was really scary

Yikes! Scary, indeed.

I can't access that strong version of myself every day.

The mantra that helped me was "Just do the next thing." Then the next....


dcp - Jan 07, 2020 3:42:41 pm PST #105 of 140
The more I learn, the more I realize how little I know.

I have an update.

I finished chemotherapy on Nov. 25th, and have mostly recovered from the side effects.  Strength and stamina are slowly coming back. I can taste ham again!

On Dec. 31st I had my follow-up CT scan and whole-body bone scan.  Yesterday (Jan. 6th) I met with my oncologist to learn the results:

  • No new tumors on my bones, and the ones already present are smaller now.
  • No new tumors in my lymph nodes, and the ones already present are smaller now.
  • My prostate gland is back down to normal size.
  • My PSA level continues to decrease, it is now well into the "normal" range.

Next steps are basically "watch and wait."  PSA testing will continue:  a test in six weeks (mid-February) followed by one in twelve weeks (late March).  If the PSA level remains low, then the next test after that won't be for another twelve weeks (so, mid-June).  If the PSA level starts to increase, then we'll have to plan what to do about it.  Unless and until that happens, the only treatment on the calendar is another injection of leuprolide (a.k.a. Lupron) in late July to keep my testosterone level and PSA level low.

So in conclusion, pretty good news.  I'm not cured, and I'm not in remission, but the cancer is much subdued and we hope to keep it that way.

2020 is off to a much better start than last year.

Thanks for all the good wishes and support.


Jesse - Jan 07, 2020 3:43:24 pm PST #106 of 140
Sometimes I trip on how happy we could be.

That's great to hear, dcp!


meara - Jan 07, 2020 6:25:58 pm PST #107 of 140

That's great news dcp!


Beverly - Jan 07, 2020 10:44:38 pm PST #108 of 140
Days shrink and grow cold, sunlight through leaves is my song. Winter is long.

Good news, dcp!