Tuesday, June 8, 2021

Changes

Changes by David Bowie I do not own the rights to this music

Yep, changes are coming! First, a little background. The PET was horrible (previous post), add out of control tumor markers (CA 27-29 was 252, high normal is 38), constant pain in my left side (see PET and the piece where it talks about my kidney on the left side). Yeah, it's been fun. I started Doxil on 5/28. My husband insisted I be a couch potato through Memorial Day. I took him up on it. Between hubby and my son, they kept up with dishes and laundry, then fed me to boot. I binge watched the Great British Baking Competition. A good time was had by all. 

Mike and I met with Dr. Kocs on Friday. He confirmed the pain is cancer related, a first for me in this journey so far. I should count my blessings that I haven't experienced this sooner. The good news? What?! There's good news in here? Yes, Virginia, there is a Santa Claus! The pain over the weekend was pretty bad; it hurt to walk (not cry hurt, but it caused me to wince .... a lot). Fast forward one week and the pain is much better. It still hurts, it's still constant, but getting less every day. As of this writing, it is more of an annoyance than anything else. Is the new chemo working already? I need hope, so I choose to believe it is!

What else did the good Dr. have to say? Well, hubby and I had an ongoing "discussion" about me taking it easy vs full steam ahead. Hubby wants me to slow down; I'm afraid if I stop moving, I won't be able to move at all. Turns out, we're both right. My stamina has taken a huge hit with all the rain and the pain in my side keeping me from walking the dog every day. I hate to admit that. I am slow and I struggle to keep up with hubby and Sam. It doesn't take long. Dr. Kocs agrees I need to work to keep my core strong, my stamina up; keep moving and do the things I enjoy .... in moderation. He also agreed that I need to take it easy. No more do dishes, start laundry, vacuum, cook, rinse and repeat, without frequent breaks in between activities. I need to learn my new normal. Do whatever for 20 minutes, rest for 30 or so before I am on to the next thing. If I don't I will pay the price. 

I played with my granddaughter this weekend, first time in over a year. Three hours later she was heading home and I was taking a nap .... for 3 hours. She wore my butt out. We had fun, though. She is too cute!

Dr. Kocs also told us I should be around in December (my retirement eligibility), but obviously, so much can go wrong so fast, there are no guarantees. We still have a lot of tools in the shed - conventional chemos, genetic therapy, immunotherapy ... and clinical trials. This is the first time he has mentioned clinical trials. I'm told there are several in the area, so I'm there when the time comes.

More good news! I was preparing to schedule my annual Reclast infusion for my osteoporosis. Instead, Dr. Kocs is adding Zometa to my treatment to strengthen my bones. This is because of the bone mets found on the last pet and the new ones on this one. We need to guard against fracture. So ... when I get my Doxil every month, I also get Zometa, so much more that my annual Reclast infusion. Three cheers for strong bones!!  My first infusion will be on 6/25. Can't wait!  This new protocol takes at least 3 hours:

  • Steroids - 30 minutes 
  • Doxil - 90 minutes
  • Zometa - 15 minutes
  • Labs and PA visit - 15 minutes
  • Waiting on meds - 30 minutes
More good news? Yes! That's at least 2 hours of dance time!! Providing I have the stamina ... last time I danced, I needed to rest a bit. We'll see. I certainly have the play list to handle two hours!

Wish me luck on increased stamina!!

New tumor market test on 6/25. Next PET in July. Fingers crossed for good results. We need good news!!!  This is me!! Dance Monkey by Tones and I I do not own the rights to this music or this picture.









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