Hi friends and family. The last couple of weeks have been good, spending the time getting healthy again (snow is gone, but summer sure isn’t here yet!) Lots of walking, even a few short runs. Read a few good books already.
Started physio for my arm, painful but should get all of my motion back. Cath calls herself a "physio-terrorist". Says if I can't be tough enough on myself with the exercises, to go back to see her. She says its 3 vessels that are "caught" in the scar tissue, and need to be massaged and stretched until they are freed.
Update - I heard later this is called 'cording' - for more info see http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm
We met with the radiation oncologist, who was very nice and informative, but gave me an overwhelming amount of information about a clinical study he asked me to participate in. I had to make a decision the next day in order to do the prep work and start it within a specific timeframe from the surgery. This would have put the radiation before the chemo, among other differences, but it was just too much info with too little time, so I passed on that. I will go ahead with chemo as planned, and meet with the radiation oncologist again when chemo is done. There will likely be other clinical trials open at that time. So I’ll save your radiation education until then :)
The port goes in next Friday (May 1st) and the first chemo is the following week (May 7th). I’m starting to collect cute head coverings in preparation for the hair loss :(
Here’s something interesting – Karen's mom (who just finished chemo!) tells me that for the second set of chemo, they put your hands and feet on ice packs during the IV to stop it from circulating to your fingers and toes, since it can cause your nails to fall off. Lovely...
Enjoy our spring weather!
Beth
Beth,
ReplyDeleteI, too, was diagnosed with Triple Negative Breast Cancer. I had a lumpectomy, completed 4 treatments of Cytoxan and Taxotere, and 16 radiation treatments (Canadian Study!).
I had a port placed in my chest and had a love/hate relationship with it. The love part was that there weren't multiple pokes to start an IV in and my veins were saved. The hate part was that it felt weird to have this "thing" in my chest. I am elated that the port is coming out on May 15th!
If your nurses do not offer cold water or ice packs for your nails, just do it yourself. I spoke about this recently in my blog. It is something I wished I would have done . . .and I even asked the Onc Nurse about it and she poo-poo'd the idea.
I have several blogs of ladies who were diagnosed with TNBC linked on my blog. Some have had lumpectomies and some have had mastectomies. All have had chemotherapy and radiation. I know that these ladies would be more than willing to help with any questions you may have (you found one - Sue).
Have you found the Triple Negative Breast Cancer Foundation site (tnbcfoundation.org) or the No Surrender site (nosurrenderbreastcancerhelp.org)? Both have a wealth of information on how to survive chemo and radiation.
Sending big hugs your way!
~Renee
Hi, I don't know about the ice packs all I know is that my hands and feet havent been affected. All my hair has fallen out and my skin is drier than normal, also I get sore mouth and sore nose. At least with a port you wont have sore veins like me!!!
ReplyDeleteNice information and positive energy.
ReplyDelete