Sunday, April 16, 2017


A few short updates...

So Kyle and I survived the 10days pre-wedding and all that stress. I completed my first round of Halaven and I will be finishing my second round this week. I will get a week off and then we start all over again. Good news is that with only 1 round of Halaven, I already have minimal tightness in my rib cage and the lymph nodes near my collarbone after one round have shrunk.

I also had my 3mo Brain MRI follow up from Radiation. Good news is the spots that were targeted are still shrinking or stable, no swelling and no infection and NOTHING NEW. Bad news is that in December they did not zap every spot due to the size of these spots as they were very small. My radiation oncologist and I are meeting tomorrow to discuss having more Stereotactic Radio-surgery for the leftover brain mets. They need to go, so we will zap them away.  I will be having possibly 1-2 SRS sessions over the next two weeks. I still have my old mask, so tomorrow we talk the plan, do the planning session and hope my mask fits. Then we see when this all starts. In summary, they are sending in the radiation cleaners to clean the rest of the mess found in my head in November. So clean away little radiation people and kill the cancer boogers.

Whenever it starts, I have to get my wig de-glued from my scalp. OH YEA and the WIG has been awesome. My hair has been thinning and not falling out, so I was able to use my 3/4 cap wig. Also what is awesome is the company that I ordered it from found out that I will lose my hair and are having a whole one made for me... it should be ready in a few weeks & then i can buzz my patchy hairs that are left and have a full glued on wig. Getting the wig de-glued is a pain, but taping near the short hairs I have at my hair line is incredibly time consuming and painful to remove. So once SRS is done, back on the wig goes.

Kyle has gone back to work, which is good. Despite the SRS stuff and changing chemo, I feel like we are at the tail end of this long medical hill. I am glad he is working and so is he. The house feels back to normal (almost).

What is not normal for me to accept fully is that I have decided to leave work and go on long term disability. I loved my job, being a therapist, helping people, and working for my company. I wish I could stay, but honestly my cancer is not stable enough for me to manage my work there at the optimal level I always want to provide my consumers, coworkers and bosses. On another note, I need to focus on my health and also taking time to get back into doing things I enjoy. I have spent 5months at doctors, in hospitals, dealing with onset of multiple medical complications, chemo changes, radiation and planning a wedding to boot while trying to stay sane. This can make one insane person go more insane and then crash... Luckily I creeped out with sanity, but I just want to get back to being me and not being the sick patient 24/7.  I just want a simple cancer treatment schedule with a routined chemo schedule, scan follow ups & labs for a few months and if I get more... even more awesome. I am hoping that after this SRS session, I will be spending more time doing yoga, walking outside, reading my books, planting my garden deck, and going to the beach.

Lets rehash the GOOD news: 
All that being said, we got married. It was by far an amazing wedding! I am so proud of us that we did that, people had fun, we had fun, and we did this with ALL the insanity going on with my health.
My brain needs to be cleaned up by the radiation trash collector. Chemo appears to be working, I have scans mid May after I complete 3 rounds of Halaven. OH and we are going to Mexico for a mini-honeymoon from the 21-25. Kyle has never seen the Caribbean and we have never gone to a Caribbean resort together. I am super excited to kick off the vacation practicing some of my favorite things ... beach, reading, swimming, yoga, massages, food and KYLE!!!!

The not so great news is....I still have medical bills & I hate that this one has 0 rationalization from my insurance for the denial, they paid what they wanted and the hospital wants the full charge from me or them. I still owe a decent chunk of change for my infection surgery and my insurance and Cornell are not budging. I am calling to get this appealled, but I do not want them calling collections on me, so I am paying & if anything I will at least get reimbursed by the hospital if my insurance wakes up and decides to pay for the "closing of wound." YEP they refused the whole closing of my wound...I guess I should walk around with an open head collecting germs... Since this is going on, I would appreciate it if you could share my GoFundMe page. Thanks so much for always supporting us, reading this and helping us.

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