Moving to hospice care & visiting :-)

I always feel better when a decision is made, even an incredibly hard one. This time is no different but also different. My brain and my body have decided to forego treatment for MBC, and I have signed on with hospice care.   

But Amy there are at least a couple more chemotherapies? There are clinical trials! As to the latter Dr.  Dan Stover at OSU said he would deliver one to my door if that were allowed, (he is really a compassionate and amazing clinician), but he doesn't recommend I travel for one. I've also been of that mind for awhile. 

The two chemotherapies would be rough on my body which has taken a beating the last 5.5 years but particularly the last couple months. Many are also processed through the liver, and my liver enzymes have spiked consistently and bilirubin above normal. The liver is in bad shape and if you've been following along you know the lungs are too. I've been on continuous oxygen for a couple weeks now. We've given Enhertu (current treatment) time to work, and I'm still declining. Both oncologists (including my phenomenal local oncologist, Dr. Gina Chung) think this is the right decision for me, which helps enormously, even pointing out that the chemos could kill me, which would be, ah, counter productive. 

I would like to get some more "good time", which for me at this point of energy etc. is spending time with people, texting, etc. before I shuffle off this mortal coil, and I think this is the best way to do that. My energy vacillates wildly but I am sleeping quite a bit. I may be up for a short visit or text depending on the day. One wouldn't think socializing (or emailing or texting) could be so exhausting (worth it) so please give me grace if I need to change or cancel plans or don't reply to a message. Speaking of- many are asking when they can visit - my sister and Jen made a sign up genius (click here)!  It's flexible though so if you need to adjust some that's ok. You'll also see it's mostly afternoon, which for now, is a better time for me. 

I feel like this should be longer, but for now that's all I have energy for :-)

Love you guys. 

Comments

Rachel Finney said…
Love you. Praying for your comfort, peace, and quality of life. Thank you for sharing your beautiful writing, beautiful thoughts, beautiful soul, smile, and face with us--your adoring public!
Anonymous said…
Amy, it’s so hard, the decision making. Praying hospice gives you the comfort and time with loved ones you deserve. Xoxo
Lori Knous said…
Oh Amy. It’s always hard to hear when this choice is made, but I’ve learned to respect the choice we are blessed to be able to make on our own. Glad we were able to connect through Ciara & METAvivor, chat occasionally, and learn from your knowledge.
I pray you able to enjoy this time with family, friends, time & energy for all your desires🤗☺️🤗💚🩷🩵
Karen Rowley Hogan said…
Amy you have been so thoughtful in your journey, so I’m not surprised you are being that way now. I think about our time together in and out of the classroom and smile. I’m glad we got our younger years to spend this version of consciousness together. Betting it’s not the last. Love and hugs.
Eleanor is the best-anor.

We all are better for knowing you. I miss you so.
Johanna Long said…
Amy, you have always impressed me Just being you. I’m so glad that Chrissy introduced me to you and I’m proud to know you. I hope and pray that you have the strength to do what you want to for as long as possible and with as little discomfort as possible. I don’t know what else to say. You are an incredible person!!
Anonymous said…
Thoughts and love from Linda and me, Amy.

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