Facebook Update

 I talked to Dr. Buys today. She said she doesn't like changing treatment without giving it a real chance/changing too soon. I don't want to go another 3 months after the progression I've had! She told me what the alternatives could be. Starting with my next treatment in 3 weeks, I will go back to Herceptin (treats the Her2 side of things) and Xeloda (systemic chemo that should treat everything). I won't lose my hair with either of the these. Yippee!

Zoom Group

We had our support group today.  I came away with new insight and resolve to keep plugging along, keep fighting the fight. It was a "processing" group today.  The questions we were asked were "What has been hard about having stage 4 cancer" and "What has been easier than you thought it would be?" So it got me thinking.  What is hard for me right now?  Chemo treatments are hard, the few days after chemo are so hard. 

But I think the hardest days for me are when crappy scan results come back.  I feel mad and sad and depressed and introspective.  It opens up a whole can of worms and questions about how much longer I might last, if / when chemo will change, and how that would affect the way I am functioning right now?  Every scan brings more anxiety than they did in the beginning.  I'm approaching 5 years since my diagnosis and feel really blessed to have made it so long.  I'm one of the "veterans" of our support group.

I get angry when I see commercials on TV about miracle drugs (that can cost thousands of dollars a month) with happy, smiling women skipping through proverbial tulip fields with their happy, smiling families. I know too many people who rely on these expensive drugs to stay alive.  

I get angry at how pervasive breast cancer is.  Two friends in our neighborhood have contacted me in the last two weeks after being diagnosed with BC.  I'm grateful that friends know they can come to me for information when there are so many questions in the beginning!  But breast cancer sucks, it seems to be all around me.

Another hard thing is having neuropathy in my feet. When I lay down at night, it feels like my feet are on fire, like I'm walking over hot coals.  I see my doctor next week and I have acupuncture scheduled the week after that. I have lots of questions for both of them!

If you didn't know me, you'd never look at me and know I'm terminal.  People think that if you have cancer, you won't have hair.  Not all cancer treatments make your hair fall out.  I have a handicap tag in the car, and when my feet hurt so bad, I use it!  Sometimes I feel like people question how sick I really am.  Not cool.  

After all that venting, there are also things that have come relatively easy for me.  After my diagnosis, I was angry, confused, so sad about how it would affect my family, I questioned Gods timing and will for me.  In time, I've found peace with all of it.  I try not to take a single day for granted. I'm doing what I can to help my family through it, I'm working on my legacy projects so they won't forget how freaking awesome I am.  It's OK, I'm OK.  When I'm OK, my family is OK.

Huntsman has been a huge blessing.  The staff and doctors and resources (like acupuncture, the writing group, my social workers, the support group) have been a Godsend.  Having so much support has made all the difference for me.  But all that had to change during the pandemic.  For a long time, only patients were allowed inside the hospital.  Imagine having life and death conversations with your doctor by yourself.  Imagine laying in a hospital bed with complications, being all alone. Or waiting around for scans and treatments with no support people.

In 2020, I was having a complete melt down after losing our in-person group, not being able to bring support people to appointments, feeling so isolated and lonely!  After everything we lost in the pandemic, I got the reluctant blessing from the social worker over our group to create a group for the women who wanted to get together face to face.  Really, it is nothing more than getting together with a group of friends for a meal every so often.  It was a really hard call for our social worker, but I was so grateful she allowed me to arrange it. I set up a group text with everyone who was interested in getting together occasionally. It's great to be able to see faces and give hugs!  One friend had the brilliant idea of having it on Wednesdays at noon because that's when we're used to being on the Zoom for group.  It's worked out great! We have 2 Zoom groups a month, and two lunch dates a month. I would post our last lunch picture here, but HIPPA ...  Lisa (social worker) might have kittens if I did.

I feel blessed to be where I am today, despite the damn (yes, damn) progression the last two scans showed.  I meet with my doctor and get my next chemo on Friday.  I have a good number of questions I need answered, and Mat will be there with me.

What's blooming in my yard