To say that the last two weeks has been a whirlwind would be the biggest understatement ever. Two and a half weeks ago I had what I thought was another simple muscle spasm. Then the PT decided she wanted an xray. That came up abnormal and an MRI was ordered for a Tuesday. By the time my youngest was in gymnastics, doctors were calling to tell me I needed to get my husband back into town to get the kids and that I was likely not leaving town without a neck brace or hospital admission. Next thing I know I am driving to the westside of town to be admitted and have a substantial neck collar put on to protect my neck. Diagnosis: metastatic breast cancer to the spine where one of my cervical vertebra had been eaten away by the cancer and the remainder of the bone was pushing on my pancake like spinal cord.
I seemed to have no major symptoms of compression which after seeing the scans appeared to be a miracle and there was no real bone pain. Darn off the charts pain tolerance. My best friend/doctor came to meet me in the ER and make sure I got all set up. At first, they were saying that there were no beds as the whole city was out of beds due to the flu and colds. But late that night they got me in and close to 1am I finally saw some doctors who were going to talk to me about the plan. They said they wanted to start on radiation the next day. And that I would need to be transported back across to the other side of town the next day or so to get more scans that they could not do at the westside hospital. My mom, husband and I crashed for a few hours as the next day came fast and furious. First thing in the morning I was joined by my dad and brother, and I was taken down to radiation to get set up for treatment later in the day. As I sat in the radiation room waiting to be taken back up, I saw my breast surgeon walk by. Just earlier this year she had declared me cured. I was hesitant when she made that kind of statement back then. I went back up to my room, saw more doctors come back in, and I tried to squeeze some eating in to gain some sustenance. The visits came fast and furious, though, so it was hard to get some. I was taken back down after a few hours for the first radiation. It took literally 5 minutes to radiate my neck. Then back up and even more chaos ensued.
Two close friends came to visit. And just as they were parking, more docs came in telling me that there was an all new plan. The radiation was going to wait. There was a neurosurgeon who wanted to operate on me first thing the next day. As my friends walked in I was telling them that I was about an hour away from be ambulanced to yet a different hospital for 6 am surgery the next morning. It was so sudden a hospitalist came in right after the radiation doctor, and he had no idea what the plan was for the surgery. My poor friends helped to transport flowers and blankets to my parents’ cars, and I was whisked away in my first ever ambulance ride. After getting to the new hospital we found there was no bed in the room, and that there was some confusion over my name. I was able to spend a few minutes settling in before my amazing surgeon called me to tell me the plan. When he heard that I had a room full of family he immediately came to the hospital to talk to us all in person. He was clear, kind, patient, and very detailed. He answered every question we had and gave us all great comfort in the surgery that looked like it would remove 2 vertebra and fuse 4 vertebra. Most of the family left to get some uneasy sleep waiting for the morning surgery. 6 am surgery prep time came and went and around 8am I was taken down.
It turns out someone else needed my surgeons skilled hands more than me and a waiting game began. I ended up not going back for my 6-hour surgery until after lunch. He found a fat mass that he had to remove and a lymph node to remove on his way to the actual surgery. He was able to save half of my 3rd cervical vertebrae, and I ended up having less fusion then we thought, but it was still extensive. I ended up not going to recovery until almost 8pm, and then I was not back in a room until close to midnight again. The next day was not too bad. I had some pain that was not too bad, and I was placed on steroids to help with swelling. The kind doctor came in everyday to see how I was and made sure we all felt good before he left.
My kids during all this time had had their lives completely upturned. Luckily, I have the best family ever and everyone immediately mobilized to make sure that the kids could continue with all their passions. My in-laws were their chauffeurs and their comfort, and my family rallied around me making sure someone was taking care of my needs. My poor husband split his time between the kids and me which was very difficult for him. I spent a week in the hospital with my fusion obstructing my ability to swallow and blocking my airway. The surgery required that my esophagus, trachea and some other nerves be moved to the side leaving them in recovery. Eating was not happening. My tongue was half numb, and I could not control it. This became the next roadblock to my recovery. I had to get sustenance to begin to really heal. And, thus I had a new battle. Some docs wanted me to get swallowing studies and get a tube put in my throat; the others thought I was doing well enough and that I just needed to get home and moving and that the swallowing would come with time. Back and forth we went for 2-3 days. Three doctors- the ENT, the surgeon, and the oncologist all agreed I needed to be discharged. The next morning the hospitalist did not agree and ordered a study that I failed. After some tense negotiations, I was sprung and was home by March 7, on orders to be on a puree diet to make sure I did not inhale into my lungs.
I love being home with my kids. Unfortunately, I was told I cannot drive as my neck is unstable to say the least, and we have kids in soccer, gymnastics, ballet folklorico, chess, and school. So again, all hands have been on deck with pickups and drop offs. I hope that I will have recovered enough by next week to at least be a ride along and see them all enjoy their activities. The recovery has been slower than all my previous surgeries which has been weird. No food for 1 week straight left me down 10 lbs and struggling more with energy. I have been working with myself diligently to get some function back in my tongue. But my doc told me the surgery would cause nerve damage that could last days to weeks. Each day my vocal cords get stronger and I get a bit more control of my tongue. As of today, though, my tongue is still half asleep, and I still sound a bit funny. I can eat more solid food, but I must eat slowly and cautiously so I do not bite my numb tongue. After a meal I usually need a nap. But I know I need to get moving. Each bit of movement helps me to feel like a more normal person. I did laundry yesterday which was tiring, and I had tons of help, but I felt I accomplished something. I made breakfast for myself this weekend: fried eggs and soft potatoes, so that was exciting. TMI warning now: my intestines woke up and went into full gear setting me back almost a day of energy. I have bounced back though, and I am continuing to plow forward. I try to eat as much as I can with good nutrient profile to give me energy and a balanced diet. Go probiotics! Eating takes time and rest afterward, but I am gaining energy every day.
There is still so much ahead of me and my energy is at a point now that I am starting to look toward the future. I have a scan on the 16th to see if there is cancer anywhere else in my body. The doctors are optimistic that given a clean chest xray and good liver bloodwork, they feel that it is likely that it is just in the spine which is good prognostic indicator. But until that scan is done we shall see. They will radiate my neck at a minimum, and bone metastases tend to respond well to radiation. The rest of the spine I am not sure on. I meet with my oncologist and surgeon on the 19th to really make a plan. They looked at the progesterone and estrogen receptors, and I am sure there will be medications related to that status.
So right now I sit and wait until the 19th to find out what all of this really means for me and my family. Until then I am trying to not google or find out too much. Don’t want to overthink. I just want to get better and enjoy my family. So here I am with my current normal..the bionic woman!