Wednesday, March 8, 2017

Social Media Break

Well, I finally completed the IV antibiotics. I also have done 2 rounds of Carboplatin and Gemzar. After my first round, my tumor markers rose. My doctor is slightly concerned that these drugs are losing their effectiveness due to my tumor adapting to them. Also a node in my right clavicle has now become a concern as it has grown according to my doctor and she suspects that could mean progression. She wanted me to continue on these drugs and wait to do my scans after my wedding. She wanted to save me the headache close to my wedding. My doctor said if there was no wedding she would scan me asap and get another TM read to determine if treatment would need to change and change treatment.

Unfortunately I do not like sitting and waiting to find out if something is truly not working. The last time I did that, I ended up in an ICU with a massive brain tumor. I want to make sure I know with scans and patterns of rising tumor markers that the drugs aren't working.

So what we agreed to do was to remain an aggressive Doctor - Patient team and schedule my Brain MRI and CTs next week & I would also get my tumor markers tested to see if this second round of Carboplatin and Gemzar is even working.

Many solutions can result from this, but I would rather know whats going on within me and have a treatment plan I can trust is working on keeping me alive. I would enjoy my wedding much more knowing my health issues and having a plan. I am not 100% sure what the plan of action would be. sometimes its radiation, sometimes its a chemo change. I will wait and see what that would be when I know and need to change my current treatment.


So here I go .... scan, treat, repeat. We all keep moving onto a new treatment, to extend our lives, hoping, wishing and waiting for a miracle. At the end of the day a lot of my friends are dying for a cure

I also have decided to step out of the online support groups for a bit. I need to distance myself from trying to help others and to focus on what I need to do for myself. I also have been consumed with political issues on Facebook and reading them on Facebook has affected my mood negatively. The solution was to leave most of the Breast Cancer Groups I am involved with, delete the Facebook app off my phone and also the Facebook Group App. I kept my Facebook Messenger app if you want to reach me or you can text me.

I am trying to keep my updates in my blogs up to date, but I had a pretty rough go in February. Since then I have been working out 3x/week either on the indoor road bike, yoga, walking/running. The exercise makes me feel good and feel hopeful that I will get back to stable cancer again. The exercise also makes me push myself beyond what I am comfortable with. Thats what I need to do for myself, for my cancer treatment, and to stay alive.

Also Kyle is still out of work, we have been much appreciative for all the help with The Gofund Me ,which has helped with travel, food, bills and treatment costs. The final cost has risen due to the costs I have been charged for my second crainiotomy. My insurance has been kicking back my hospital's billing department leaving me with many bills that are unpaid. Thanks!!!


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