Overconfident and Humbled

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I have been feeling great lately! In hindsight I have been feeling too great. About three weeks ago I began to do strength training again. I missed my guns! I wasn’t doing much and I was definitely going slow. Just 4 arm exercises with only 5 lb weights and 3 bodyweight leg exercises. Not much but I was feeling the life coming back to my muscles. My run/walks were becoming more running and a lot less walking. My husband and I had added nightly walks on the days that it wasn’t raining. I had gotten my run/walks to almost 3 miles of running with just about a quarter mile of walking interspersed throughout the run. After a weekend trip with 2 out of the three days driving and lots of housework I had a need to hit the trail. I was determined to get the full 3 miles of running no walks. I did it! My legs felt weak afterward, and a smidge wobbly. I assumed this was due to some dehydration from the run in the heat, and the fact that I had not done that distance in 4 months. The next day I continued my overambition and weed whacked the yard. It was then that I noticed that I had a vibration that ran down my back when I looked down at my feet.

The next day I did an easy run/walk to see if the wobbly legs would return. They did not, but the vibration when I looked down did return. I began resting as soon as I got home. After a walk and a night of sleep the vibration was slightly better. The next day I foolishly helped my dad move 3 dishwashers…I know! What was I thinking! And now I have been seriously resting since then. I was really concerned it was a sign that I had done something to make my fusion fail. Luckily, I only had to wait a week to see my surgeon.

That visit turned out to be great. The x-ray I had the day before showed that I did not have a failing fusion!!! Yay!!! He suspected that the vibration had nothing to do with my neck and was in fact a injury to my lower back. He said to watch it, and if it did not improve he would order an MRI of my lower back. As it had already shown signs of improving, I have great hopes for it. I really like my surgeon. He clearly really cares about my family and I. He said he missed seeing normal families like ours…I think that is the first time we have ever been called normal! I would not call us normal, but we do come together wonderfully in a crisis! I am very lucky for that. I will be resting and working my way back for the next month.

Now onto my other appointment, with my oncologist. I was able to get the results of my PET/CT scan. This was the scan that would tell me how my treatment was going and if the cancer was anywhere else…The scan was AWESOME!!! Tumors had shrunk or become less metabolically active indicating that the treatment was working. There were words on the report that said “healed”. Only good can come of that word! I had been having my white blood cell count drop with my oral chemo, Ibrance, and we had been moving my medication schedule around to find a sweet spot and it looks like we found that also. Three weeks on, 5 days of each week, and one week off. I feel like a giant weight has been lifted. I feel like I can make plans now. Which is good, because the start of school is here and there is a lot of planning involved in that! I hope you all have a great start of the school year or fall! I know I will, especially if I do not get too cocky again about how I feel!

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Bullet Journal Brain

Here is the long procrastinated blog post about how I use a bullet journal to keep track of my life. Perhaps the reason I am getting it done now is because I am procrastinating getting my homeschool planning done! The other truth is that despite the appearance of my house I am a bit of a perfectionist. I usually put off starting a project until I can get it done to my high specifications. Children of course have quelled some of this need for perfection but I still allow it to persist in some arenas. All procrastination, aside how do I manage to keep my chemo brain working toward all the things I need to do in a given day? Enter bullet journal. At the beginning of this year I was at my worst chemo brain. I could hardly remember to do anything. I forgot to get gas more than once and walked through the rain one day because of it. As the person who was always in charge of remembering where people put things, this was very difficult. I was desperate to find a way not to be embarrassed again for having to call for help and I definitely wanted to not come to the point of forgetting a child at an activity…which I had come very close to. As I was participating in a chemo brain study I was learning that writing things down on paper was proven to help. I latched on to this idea as I had tried more than one app with no success. I soon realized that there were a lot of pinterest ideas popping into my feed of something called a bullet journal. After some googling I discovered the originator was Ryder Carroll and his website bulletjournal.com gave me a good start. The beauty of this system is the adaptability of the system. I spent a few months changing things and I soon found that if I wrote things down in a weekly log, then again the night before and then looked over it repeatedly throughout the day I was remembering more!

I now use it together with my google calendar to keep my life in order. I put all appointments in the google calendar on my phone that way at the very least I do not forget to go to appointments. The kids also know that if it is not in the calendar it does not exist and I am not responsible for any missed activities due to it not being in the calendar. The google calendar allows us all to keep from double booking our family…well unless it is two different sports activities and we have to divide and conquer. At the end of each month, on a Sunday, I sit down with my google calendar and my bullet journal and transfer everything.

As you can see I am a fairly simple person. Number one, I do not have any artistic skills whatsoever, all those genes went to my brother. Number two, I also have a lot going on with 4 kids two of whom I homeschool, so I do not have much time for setting up all these layouts. I use a fairly simple system of each person in the family having a different color for their event/activities/appointments. Then I use one color for family activities such as visiting grandparents. This allows me to get a quick look at the chaotic needs of the month. This month is pretty benign as most fall activities have not started. I set goals for each month to keep me on task for my own activities. At the end of the month I will return to this page and see what I was able to achieve.

Once the month setup is done I move on to my weekly setup.

The setup I use can be adapted to whatever I am currently focusing on. The top row I use for re-writing appointments and top priority to-do’s such as blood draws. The second row is for the exercises(runs, arms, legs) I plan on doing each day. Clearly I am not exercising this week. I overdid last week so I am taking it easy this week. Still not 100%, but close enough that I trick myself then pay the price. The bottom row is where I do my meal planning. I do not keep my shopping list in my bullet journal, I rely on my phone for that. When I was working there was another row that I would write work to-do’s in. All that space at the bottom I have not figured out what to do with. During shopping weeks, if I can remember, I use this space to track my spending.

The next step is daily logs.

Here is my daily bread and butter. I write everything I need to do each day here. I carefully log the medications I need to take. If I don’t write down that I took them I have absolutely no memory of it so it is critical that I write it all down. I keep the color coding consistent through each log: monthly, weekly, and daily. I write down the smaller things that need done: phonecalls, small to-do’s, big to-do’s, ongoing tasks, holidays up under the date, and anything else I need to remember. By the time an appointment has made it to this page I am confident I will remember it and make it there as I am on my third time writing it. At the end of the day I try to use the remaining space to journal the day. I note things the kids have done, symptoms I have had, foods that did not work with my joints, and I try to end it with some gratitude notes. Keeps things collected and in perspective.

I use washi tape to mark pages I may need to flip back to. Purple glitter, given to me by my youngest, marks the month calendar so I can flip back to it each week or as events are added. I use gold to mark the start of my oral medication cycle. I have a blue one I use at the back of the journal for reference pages: family present idea page, exercise idea pages so I can mix up my workouts, song wish list, or anything else I may need to reference. As the days go on if I find I need to take notes for some reason I just put them on the next available page and list it in the contents at the beginning of the journal. Before doctor appointments I take a page to write questions so I don’t forget to ask anything. When we go on trips I make packing lists and to-do before the trip lists. Whenever I need to write something down I keep it in this journal that way I don’t lose pieces of paper and I always know when and where I need to be. It works really well. Now if I could write down everything I need before I head into the pantry I would not waste as much time standing in the pantry wondering what on earth I am doing there.

I enjoy the setting up of the journal every morning. My mathematical mind revels in the perfectly made lines. My realistic mind lets the mistakes slide, after all I am not perfect why should my journal say otherwise. When I was on steroids and had insomnia I would easily get up early pour a cup of coffee, get my breakfast potatoes started and sit down with my journal to set up the day. I felt so organized and peaceful. By the time the kids got up I felt ready for the day. I am naturally not a morning person so this was all new to me and I enjoyed it. So now that I am off the steroids and back to not being a morning person, I am desperately trying to get my butt up early enough to reclaim these moments of peace. I guess I should have added that to my monthly goals. I better get to bed so I can make another go of getting up early!

Chipmunk face but no neck brace!

I have been delinquent in my updates, and I apologize. It has been a busy couple of weeks. I finished my radiation on the 17th of April. I did not notice really any side effects until the last two days. Then I started to have a sore throat, especially when I ate. It was not a horrible sore throat; it felt like a bad allergy throat. That sore throat lasted up until this past Thursday. At that time I realized that what I thought was surgery related swallowing issues was partly radiation-related swallowing issues. As my throat improved so did some of my swallowing issues. I was very happy to have my early afternoons back, as during I had to get into town everyday at the same time and then as it was so early that I was usually killing some time until I picked up my oldest. When I say picked up, I mean I rode with my lovely driver, my mommy usually, to go pickup since I had a neck brace on that prevented me from driving.

    That week I also traveled with my family team (my husband, mom, and brother) to Philadelphia to a metastatic breast cancer conference. It was an intense three days. We learned more about what I might be facing and how other people have dealt with various issues. The main takeaways were that everyone is different, that treatments have come really far, and there are a lot of good treatments in the pipeline. There was so much information, and we have been so busy since we got back I don’t think I have had time to process all the information. In fact, as I was writing this I was thinking it was two weeks ago, when in fact it was only one week ago.

    I got a call last week informing me my follow-up with the surgeon was moved from April 30th to May 2nd. It may not seem like that big a deal but when you are sitting around unable to take any of your four kids anywhere without asking for help it gets old really quickly. I convinced the nurses that I could get my x-ray earlier than the appointment day, and I went right out and got it. This weekend my dedicated doctor called and said the x-ray looked good, and I could remove the brace unless I was doing something adventurous. The levels of elation as I got behind the wheel for the first time!!! My husband rode with me to be sure that I was actually comfortable and could manage it. It was glorious. I have been driving for a few days now, and it is so nice to just leave when I want! By the time I was able to see the doc on the 2nd I had been loving driving for a few days, and I had found that my neck would get a little sore just from being used after two months of not being used. The surgeon was not there but I did see the PA who cleared me for all exercise as long as I start slowly. They even said I could start easing into running as long as I wear my brace while I run. So I am off to the races!! Just very slowly and with a brace.

As I my picture suggests I am still on steroids which is causing the chipmunk cheeks. I have been working with my oncologist to wean myself off those, and hopefully, I will be off them soon. I am down to one every other day and getting a horrible headache on the off days which I will have to discuss with my doctor. I am doing great in terms of my other medications, and I have a lot fewer side effects than they expected, which is awesome for me! I have been increasing my protein intake which has been helping my overall energy level, and I have been taking some walks around the neighborhood which helps not only my muscles but also my mood. I love living in the mountains, and I feel so much better when I can get out and enjoy them!

I am still planning on doing an organization post as some people were interested in seeing how I wrap my head around all the kids’ activities and my medical stuff with my chemo brain. So that will be coming hopefully soon. I hope you all have a chance to go outside and enjoy some nature today!


Steps and pills will help my bones

Yesterday was radiation day 5! That means I am more than halfway there, I only have four more to go! That is kind of cool and exciting. I will be glad to have the daily early afternoon back. Going in at 2:40 everyday does not seem that bad unless you are also trying to homeschool three kids and get a ride from someone. The radiation has been fairly painless. I did notice some soreness in the back of my neck starting Friday after radiation and also Tuesday. I think it was the muscles reacting a little to the radiation around them and also those are both gymnastics days where I get to watch my youngest while I sit on some very flexible bleachers that let me feel every step of every person. So that may have had something to do with the soreness. Watching soccer from the car does not seem to bother my neck as much. The other symptom from the radiation seems to be fatigue. On the other hand that is also a symptom of the new medication, Ibrance, that I started taking on Sunday. Not sure if I am getting fatigue from both or just from the Ibrance. I am guessing both. I was worried that since the pill was larger, almost as large as the calcium that I cannot swallow, that I would not be able to swallow it. This would have been a problem because it is a capsule and cannot be opened or crushed like the calcium. Fortunately, the pill is a soft shell and it seems to go right down as long as I take it in the morning.

My surgeon had told me I could take my brace off during the night as my neck is supported by my pillow. I find if I leave my brace off most of the night that when I wake up in the morning I have less swallowing issues and my tongue and face feel like they have a little more sensation. I am hopeful that this bodes well for when I get the brace off at the end of the month, and that I will start to see a lot more improvement in my tongue sensation and my face control. Right now I have a hard time getting my lower right lip out of the way of the food I am biting. But I was talking about swallowing my new pill. The night off from constriction of the brace gives me better mouth and swallowing control so I have been able to get that pill down. On Sunday and Monday I definitely noticed fatigue in the afternoons. I have read that this can improve, but given that I am doing radiation simultaneously, I will not really know until after the radiation ends.

The fatigue is definitely manageable right now. I just keep the homeschooling light, just a few subjects a day. Then I try to rest in the morning on days when I know we have a lot going on in the afternoons. In fact yesterday we had a lot going on in the afternoon so I picked fun self sufficient activities for the kids that did not even require me at all. Then I sat in the recliner and rested. They felt good, and I felt good going into the afternoon. Tuesday we had some heightened emotions in the family which is to be expected in a situation like this especially when you throw in that my husband has a cast on his arm from his surgery. This is another reason we took it light yesterday. I had some chats with the kids about their emotions and then their art was play dough which is great for all of their sensory issues and definitely helps to bring them back to center. I think my plan may have actually worked, and everyone was great last night.

On the exercise front I have been working at meeting my watch step goals. If I meet them they go up for the next day. This week I have done pretty well, getting 3 out of the 5 days. I was able to get in a 1.5 mi walk to the mailbox this week. I need to do more of those, but with the radiation and the homeschooling It is hard to fit it in. Today I tried just doing some step ups while I waited for my coffee to brew. That was harder than I anticipated it being. Which means I should do more of those. I should try adding squats too, because when I am putting dishes away I still have a hard time getting back up and have to grab the counter. I always say the more you do the more you can do. So time to get moving on the days when I can’t get out and go for a walk!

I had a phone call from an old college friend yesterday, and she asked how I keep track of everything that the family does on a daily basis. I would love to blog about stuff that does not have to do with cancer, too. So you let me all know if you would be interested in my bullet journal/digital system that helps my chemo brain keep track of our crazy family life. Post a comment on facebook or here at the blog with your opinion.

Shots Ahoy!

Let the treatment begin! I got the first set of shots yesterday. In all the confusion to get the insurance approval for all the medications the doc’s office did not call me to actually talk to me about the side effects and everything I was getting into with the shots. Going into the appointment I was a little nervous. I met with my doctor first and he proceeded to tell me all my bloodwork looked good. I had one rogue cancer marker that was high and did not make sense to him, so we will have to wait for the next set of bloodwork to see if that will go back to normal or stay weird. It was normal before surgery and then high after surgery. Which he found to be unusual. I do unusually well, so he just rolls with it. Aside from that, my body seems to be starting off well and ready for what’s coming. As he was in the middle of his exam a nurse popped in and whisked me away for the shots. Apparently, the chemo nurse who gives the shots needed to go home and was waiting on me. As I came into the chemo room they assumed that one of the nurses had called me and talked to me about the side effects and what was involved. I was able inform them that I had no idea what was coming. So, she handed me a stack of info to read later and told me that what I thought was two shots was actually going to be three. Two of the shots would be given at the same time because they can be painful. The rational is that it is best to just get it all over with at once. Those two shots were the faslodex which is the anti-estrogen receptor medication. This medication targets the estrogen receptors on the breast cancer cells and tries to destroy them, so that any estrogen cannot bind to the cancer cells and help them grow. They told me the side effects could be shot pain or nothing, but to read the info packet. The two shots would be in the butt. The third shot would be given in the belly as recommended by another tech in the room who also gets the same shot. This shot is Xgeva. This is a monoclonal antibody that helps build and repair the bones. This one could cause bone pain or be nothing. The tech who got the shot told me she had no side effects, but she did recommend they inject slowly as otherwise it could cause a significant bruise.

Then I got the two shots. Nothing is more comforting, as you get a shot, then the nurses telling you that they have to regrip the syringe with two hands to force the liquid out into you. Then comment about how thick the liquid is. Oh yeah, patient, you might want to take deep breaths while we do this. Nothing to do but breathe deep, suck it up and go with the slow flow. It was not too bad, but also not great. Then they switched to the belly shot. This one did not seem as intimidating as I used to have to give myself a shot in the belly during chemo in 2012. It was injected slowly and as I have a bit of a steroid belly, it did not hurt at all.

I have been on the phone with various people today as I am still waiting to find out where my last medication is. The shot nurses were surprised I did not have my pills yet. They said people usually get them over-nighted, and I have been waiting for at least a week. So the goal for today is to find where those pills are. So much back and forth! After about 10 different phone calls I realized the nurse at my oncologist’s office dropped the ball and then dropped it again. I was finally able to remedy the situation, and it looks like I will be able to get my last medication by the end of the week. They informed me that I should get a call today or tomorrow in order to set up an overnight delivery for my medication! Super frustrating to have to do all this but at least it is done now. That means that all my communications that happened with friends and family after the 10 phone calls were very confusing because I had used up my brain power and patience getting the medications on track!

Since then I have been feeling really well. The pair of shots have left me a bit sore, so comfy pants are on order today. I may be a little more tired than usual but not significantly. I did feel some slight soreness in my back, but that seems to have passed. I call this a major win. I have meds working on kicking cancer’s and my butt, yet so far, no significant side effects!

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!