Happy Thanksgiving! Merry Christmas! and Happy New Year!
I hope everyone had a wonderful holiday season! I decided to take a break from blogging over the holidays. A lot has happened with this disease and just life.
In November, I flew to Iowa to surprise my cousin for his 40th birthday. Our birthdays are 363 days apart and this year we were 40 at the same for two days. He was very surprised! It was cold as hell though! I left 70 degree sunny weather in Reno for 12 below in Ottumwa. I sure do love my cousin!
Christmas was spent at my sister’s. We had the boys and other family joined us. We had a fabulous Christmas Eve dinner and I stayed up WAAAAY past my bedtime helping her put together an arcade size basketball hoop game. It was huge and took up her entire living room! Christmas day was really quiet. We were exhausted and I accidentally drank too much the night before… so, I was couch bound and slept most of the day. HAHAHA!
One of the highlights from Christmas was our annual Secret Santa Exchange with my friends. Every year our names go in a hat and there’s a max dollar amount allowed for your secret santa. Well, this year my friends had something else in mind. They secretly gave me the same person I had the year before and suprised me with a ticket to New York City! All of them were in on it! They must be so tired of me talking about how I really want to see Les Miserable’ and Jimmy Fallon and decided to just send me there to shut me up! My friend Sam C and I are tentatively planning a May trip!
During the last couple of months I have been working on my appeal to my LTD denial. It took time to get all of my letters from my medical team detailing the differences between my early stage breast cancer diagnosis and this diagnosis. The Blood Guy explained the differences in treatment and prognosis and The Nuker clarified her use of ‘chest wall’ in several of her reports. Well, I have finally recieved all of them and sent everything last week. I should have a response in 30-45 days. Please pray that Unum will come back with a reversal in the decision. This was my first month on the very limited budget I have and it has been difficult.
Cancer wise, I’m pretty stable. 2 weeks on chemo and 1 week off with monthly bone infusions. I do get extremely tired towards the end of my 2 week cycle and the bone infusions tend to wipe me out for a day but all in all it could be worse. I sure sleep a lot! I do find that my side effects from chemo are variable and that is what I struggle with most. Hand n feet tenderness, break through nausea and constipation are the worse. I did see a neurologist (The Noggin Guy) about my headaches and have discovered Tramadol for headaches and pain. We’re still not sure yet what is causing my headaches so I keep a headache journal trying to find some kind of trigger or routine. No luck so far. I really like Tramadol as it is non-narcotic. I have developed some increasing pain along my lower spine, around where my 9th rib used to be and toward me left shoulder. The Tramadol has really helped with this type of bone pain too and most importantly it doesn’t affect my GI as much as narcotics do!I have my regularly scheduled PET/CT in February. I also saw my plastic surgeon and It’s possible I may have some fixing done in February. The Blood Guy says it’s ok and now is the time to do while my cell count is pretty normal for someone who takes daily chemo. I did have a scare with a possible root canal and of course I was terrified it ONJ (osteonecrosis of the jaw). But I may have dodged that bullet and a bite adjustment seems to have helped for now. Let’s hope cuz I really don’t want a root canal but I also really don’t want to lose my tooth either.
On the volunteering front, I had a Nv State ACS meeting in Vegas in December. We had a nice lunch at City Grille, which was beautiful, and an update for our legistaive year ahead. There is a Palliative Health Bill in the works from the ACS. I look forward to Lobby Day in March and hope I can make a difference in passing this bill as I’m currenlty in palliative treatment. NPAF has invited me to attend Washington DC again this year and I sure hope I can make it!
“So, this is my life. And I want you to know that I am both happy and sad and I’m still trying to figure out how that could be.” – Stephen Chbosky