The last couple of weeks have been a bit of relaxing, time with friends and just living life. We have taken Fifi out several times this summer. We have more Fifi adventures tentatively scheduled and I have been working my way through #TheMandiList, our trip to Europe is mostly booked. I am super excited, and I am nervous I won’t be strong enough for our AirBNB room in Florence that involves 5 flights of stairs, but it has a gorgeous view, and was much cheaper than a hotel, so I am going to DO IT!!! We have a travel registry if you were interested in helping us out with the costs of our fantastic trip of fun.
I am several weeks into PT and I am getting what they call “trigger point injections” along with learning stretches and exercises. My pain team determined that the main cause of my back pain is not actually my spine so much anymore as it is “myofascial pain syndrome” which has to do with my back being full of trigger points (small painful masses) caused by the trauma to my back. They have been teaching me how to stretch and naturally release them along with these horrific injections.
The injections involve the PT finding my trigger points (which involves poking at them until they hurt). They then put a needle in and move it around until it also hurts and I can identify it is in fact in the trigger point. They then inject lidocain. Now the issue when they inject the lidocain is it sets off the pain that that trigger point usually causes (which can be referred pain that shows up in other parts of your body).
The first time I went in for the injections I was talking and giggling and trying not to pay attention to what was going on until they got a major one next to my T7 (where my biggest tumor was), I screamed and started crying and didn’t stop sobbing until after I got home and curled up with a bag of ice on my back. I had bruises all over. I was not sure I was going to let them do it again.
The subsequent two appointments I learned to just breath deep through the injection and try to relax as much as possible. Mike does not like to be around me after these appointments because I turn into a mega-grouch, I feel like I have been punched in the back for a day. They decided that they want to do two more and I am pondering whether or not I can take it. The aim is to get my back as cleared up as possible since I signed up for an exercise program starting the end of July with my hospital that should hopefully get me motivated and my strength back to that of an 80 year old lady rather than a 102 lady (which is where I am right now). If I am not ready I can just create a bunch more or make them worse, but I am tired of babying my back. I need to get stronger. The many gifts of cancer treatment…
Chemo is beating at me. I am at that place that chemo feels like normal life and I don’t remember what it is like to live without it. 4-5 hours of energy a day feels normal. Not feeling my toes and fingers doesn’t feel normal though and I hope the neuropathy resolves when we give me a chemo break. My fingernails and toenails look awful (but that won’t stop me from wearing flip flops because it is summer and it is HOT).
Next week is my big scan. I am having less scanxiety about this one, but I am still nervous. My tumor counts were down to 29, so they are in the “normal” zone. This is very exciting as it keeps showing that my treatment is working. My counts got up to the 120’s and when they were that high I was not feeling well and really thought there was a possibility we wouldn’t get the cancer under any kind of control. No matter what I “wha wha” about with the treatment, IT IS WORKING. So I am grateful for that. I have my PET-CT on Thursday and we will review it at my appointment on Friday and decide whether or not the Taxotere stays in my regimen. If not, we will just stay on Perjeta and Herceptin (and hopefully add an estrogen blocker in there called an AI) – I will start to grow normal hair and maybe have a bit more normal life (as normal as it can be when you have stage IV breast cancer).
Here is a bit of a scene from our fireworks show we did for the 4th of July #TheMandiList item 69 (Mike made a video with his Inspire 1). We managed to get about half of our fireworks lit before we had a couple of police officers drive by and let us know that we weren’t allowed to shoot anything over 8 feet (which was super confusing to us, because we are in a fireworks allowed zone and Utah passed a law allowing aerial fireworks a couple of years ago). Our neighborhood had been annexed by the posh town of Holladay, and apparently the posh town of Holladay had voted in May not to allow real fireworks in their city of poshness (and didn’t really tell us newly annexed people who lived in a different city last year and were able to shoot of lovely fireworks). Grrrrr. Really put a damper, my friends had pitched in and we had a lot of fireworks – plus we are now the naughty people in my neighborhood with police visits. Hahaha. We did them on the 3rd though, may have been better off on the 4th when more people were just as aware of the law changes as we were. Hopefully the annexation does something for the property value, since they sure know how to ruin our fun. 😀