You didn't miss an invite to my birthday party...

So, my 39th birthday is just around the corner and I couldn’t think of any better way to celebrate than…[dramatic pause] in the hospital!!! [insert balloon and confetti emojis here]

I have some bummer news. Spuyten, my spinal tumor, grew… again. This time the narrowing of the space for my nerves is just too much for my medical team’s taste. While I am actually feeling just fine, the danger of things becoming much worse very quickly is very high. 

I am lucky to have a friend through Hackley who is a neurosurgeon. He was able to walk me through what to expect and good questions to ask of my surgeon. We spoke to two surgeons, and will actually go with both! My primary surgeon is Dr. Justin Neira. He specializes in spinal oncology and I felt very comfortable with him. We also met with Dr. Chris Mandigo who is more advanced in his career. Dr. Mandigo said that he would be willing to scrub into the surgery which means that I would have two very competent surgeons on my case (and kick out a resident/trainee). I am very hopeful that this will work out. 

Prior to the “main event,” I will go into the hospital on Tuesday, May 7th (date changed from Monday) for an embolization because apparently my kind of cancer “is very bloody” so we will reduce blood flow to the site prior to surgery. This will be done at the main hospital. I will be transferred to NYP-Westchester for spinal fusion surgery. Dr. Neira cited many advantages to being in a smaller hospital including more frequent PT and OT (2x per day), a private room, and a nicer, friendlier, more collegial vibe. Also, for us, it means not needing to go into the city! 

 

The spinal fusion will happen on May 8th– my last day of being 38 years old–and will take approximately four hours. The plan is not be super-duper aggressive with removing all of the cancer. As we know, metastatic cancer can not be cured with surgery. The goal is to allow for the next phase of care. He will take out the bone that is “involved” with the tumor which will destabilize my spine, so they will need to put in carbon fiber screws. (I can’t have metal in my body because I need MRIs.) They will put in a bone graft from a cadaver to help bone to grow– but with all my meds, there is a chance it will not “take.”

This is a huge bummer because no one thinks that I will feel better after the surgery. It is likely that my leg weakness will return, I will have lots of back pain, and all sorts of other unpleasant things. Those things should be temporary. 

The likely scenario post-surgery will be six weeks of pain management and regaining balance, stability, and function. I will have a lot of physical therapy for three months to help me get back to normal household chores, and light movement. I will not be allowed to bend, lift, or twist during this time. It will take a full year for me to be back to “normal”-- although, I will have a new normal with less curve in my spine, limited bending, etc. 

It is possible that I will be a candidate for further radiation to treat the cancer after surgery. While I am totally into the idea of blasting the cancer… I am much less keen on the side effects of radiation which led to three months of hyperbaric treatment last time!!!

So, there is a lot going on! I will do my best to keep folks posted. If you would like to be added to the list of folks who get an email update post-surgery from Kelly or Chris, please fill out this form. 

At the moment, I am a bit overwhelmed with trying to tie up loose ends at work, getting appointments scheduled, returning library books, touching my toes for the last time, etc. I am pretty bummed out about all of this. My 39th birthday is the day after surgery, so I guess I won’t be having a mega blow out to signal the last year of this decade. I will also miss the end of the year performances and festivities at school, and having a carefree summer.

Please send good vibes, healing energy, prayers, etc. into the universe. I think I am going to need it.  XOXO A