Scans and such

Yesterday was a long and tiring day. We got the kids up very early yesterday to take my kiddoes over to the house of one of the two nicest ladies ever. My two homeschool mom rockstars agreed to watch my non-morning children at 6:30 in the morning so we could get the whole family team at my 7am appt. My mom ran my oldest to school, and we met at the office. I had my PET scan last Friday and told the tech that I had an early Monday morning appt. She told me she would put a stat rush on it so it would be ready. Unfortunately, it was not ready, ,but the team was all there so we met with the doctor. He spoke in somewhat vague terms as he did not have the vital information of the PET scan. The PET scan shows where in my body I might have tumors or cancer hot spots. I had to drink barium mixture eat a special diet and then have some radioactive tracer put into my veins as they scanned so the machine would show where the cancer might be. He was hopeful that all of my tumors were in my bones as it gives a better, longer prognosis. He felt this was a likely scenario as I had no abnormal bloodwork or other symptoms that would indicate I had tumors in my lungs or the liver or anywhere else. Of course, then again, I had a pancaked spine with the only symptom being a muscle spasm so I know I am not the average patient. I took his word for it and remained hopeful though.

My family team is composed of my brother, the PHD candidate, filled with more research questions and knowledge than most people know what to do with. My dad the quiet listener. My mom, the worrier, with her own vast set of research skills and knowledge. My husband, the rock and stabillzer of the group, to bring us all back from the four corners. I tend to stick to the straight up. He told me the pathology of the tumor showed that it was in fact likely related to the original tumor from 2012 as it shared the same markers of being estrogen receptor positive, which means the tumor is being driven by estrogen. Not sure where It’s coming from but there you have it. He said this was good because we could target the cells with an antiestrogen receptor degrading medicine called faslodex. He felt this medication mixed with another one called Ibrance would be the best course of action as long as the PET scan showed no other tumors. He also told me he wanted to put me on a medication called denosumab which would help strengthen the bones and prevent new tumor growth. The faslodex and the denosumab are both injections. I am currently scheduled to start the denosmab on the second of April I believe.

My oncologist told me that I will need radiation to finish off the tumor that remained in my neck. We were able to negotiate a family trip to visit Nathan’s grandmother in Colorado before the radiation will start on March 30. I will have a day where they set up the radiation machine and get me lined up for treatment on the 30th and then I will start radiation the following week. It looks like I will have 10 sessions of radiation and each one will likely take under 10 min. They do not anticipate the skin reaction that I experienced last time since there are much fewer sessions. The oncologist also had done some bloodwork to see if there were cancer tumor markers that could be monitored. All of my tumor marker bloodwork came up as normal, and since all is not normal, we will not be able to use those markers to monitor the tumors in my body. The main way he will be monitoring me is with PET scans and CTS about every 2-3 months. This is how he will watch if the treatments are working and when they stop working. That is the reality of this new situation. It is likely that the bone tumors will respond well to radiation and my oncologists’ treatment plan. But at some point the treatment will stop working, and we will move onto something else. This could be years or not. We will just have to wait and see and cross those bridges when we come to them. I get a general feeling of hope that things will go well though.

My doctor also put me back on the other pills that I was taking like allegra, vitamin D and calcium now that my swallowing post-surgery is better. He also made sure to tell me to continue to eat well, a low fat, high fiber diet with enough protein to keep me strong. He also told me that as soon as the surgeon clears me, I can exercise everyday! I have been able to make it down, and more importantly, back up the hill by house so I see hiking in my future! Looking forward to that! We left the meeting still in anticipation for the main information that the meeting was supposed to be about which was frustrating and draining but we all left hopeful. The oncologist made sure that he would call me later in the day with the results of the PET scan .

I then had an appointment with my surgeon afterwards. We killed time at breakfast before the appointment hoping that the oncologist would have time to call before we all had to go separate ways, but alas he did not My mom had to pick up the kids and my dad and brother went off to sleep and work respectively. Eventually we learned that the PET scan showed that the disease was all in the bones, and that was a good thing!!! My oncologist texted this info along with telling me that he would look into clinical trials in NM and see if I qualified for anything and that he would talk to me after 5pm. So a plan would be made by the end of the day, and it looked like the plan would be what he laid out for me in the morning, as long as there was no clinical study I could get in on.

The surgery appointment was much easier as it was just a quick check. I am cleared to do more around the house and gradually increase my chore load. I was also cleared to take my neck brace off for short times in bed or when I am sitting fairly still in my chair. That was kind of exciting, but at the same time he tells me that I have almost nothing holding up my neck, so I need to be careful and not hike or run or trip or fall. He said I could do walks on the pavement, but no trails. Eventually I will be able to run but that is in the summer maybe. I will not have my brace off until maybe April 30th which is my next check up. I also cannot drive until then to help keep my neck stable and strong. So another month of being Miss Daisy. I suppose that is not too bad given how pancaked my spine was. I also still have some numbness in my tongue which he said is from a removal of an enlarged salivary gland that he found in my neck during surgery. He feels that the parotid nerve was damaged and that it will take months for other nerves to take back the sensation zones that were lost. I can chew and eat; it just feels numb. I hope it does not take that long for feeling to come back. Another wait and see game. Each day I am a little better so I am hopeful it will not take that long. I also had an xray that day so the surgeon can see how I am doing. He has not called since then, so I assume all is well.

So I waited until almost 8pm to hear back from my doctor. That’s dedication for him to come in at 7am and then call the same patient back 12 hours later. He informed me that, yes, the PET scan was good showing only tumors in the spine and pelvis. He also informed me that he talked to a breast specialist at the university who agreed with his plan of action. The two of them talked about clinical trials at UNM and decided that there were none for which I would be qualified. They also discussed the possibility of traveling to MD Anderson in Houston. The UNM breast specialist felt that there was not likely anything that I would qualify for there right now. My oncologist said he would try to verify the UNM information by Wednesday or Thursday of this week so I would not have to delay treatment and make a week long trip out to Houston to find out that I do not qualify. I will be giving him a call Thursday to see if we are starting things this week or if we are waiting for a consult with them.

I also had a lovely chat with an old college buddy’s wife as a phone consult. She concurred with the treatment plan baring anything better from MD Anderson. She gave me tons of info and spent a good deal of time talking to me. She emphasized keeping tabs on clinical trials for future possibilities and gave me great resources to look for those. She recommended that even if I can’t start a clinical trial at MD Anderson now, that I still need to get over there to get my finger on the pipeline of what is up and coming and might need in the future. She even sent a follow-up email with all the information at my fingertips so I can get moving.

So much info! Things are complex, but look good. In other words, tshings are about as good as we can get right now! I’ll take it! I see hiking and running and good eating and family fun in my future! Earlier this week I was feeling like my blog name was a bit of a misnomer….I am not so sure I feel that way now! I have a crack team of wonderful people assembled and things are looking up! I can walk and be sore and eat good food and love my family!

The shit hit the fan, or the bone hit the spine

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!