Monday, June 21 we headed back to Mayo for a COVID test. Yes another test, even though I left the hospital, went home, and then back to the hospital with absolutely no contact with anyone. They are only good for 48 hours...
We went to the hotel and prepared for the bronchoscopy the next morning. I have had this test so many times, I kept meetings on my calendar for later in the day and planned to be only be out for a couple of hours.
Side note important for the story: It should be noted for months my eating was diminishing. I kept telling the doctors that I wasn't hungry or thirsty. At this point, I could only eat a few bites and food was actually turning me off. I found the majority of things just repulsive. I kept being told....this is just what cancer does. I know what cancer does but this was worse.
We got to the hospital and checked in. Sign in and pre-op went normal. I was taken into the procedure room. I went to sleep. I do not even remember signing the consent or them getting ready, as I normally do. When I woke up, I was in a dark room, strapped to a bed, barely able to open my eyes, and unable to communicate.
I could hear my mom talking to me and felt her holding my hand and rubbing my arm. I could see my brother was at the foot of the bed. I knew something was wrong but I had no idea. In typical Tara fashion, I knew I needed my mom to cancel meetings and let my boss know. I used my finger to start writing words on my blanket to communicate. She couldn't tell what I was writing. Apparently, I would get a few letters and then nod off. I would then start up again. She was having trouble tracking what I was trying to write. I think it is because she is not a game player.
Another side note: My mom is not just not a game player. She HATES playing games. She hated them as a child. She hated them as I was growing up. She would suffer through Candy Land or Chutes 'n Ladders with me. I could get her to play gin rummy sometimes but she would rather do ANYTHING than play games. Thank goodness my Nana loved games so I was not deprived. LOL!
My brother, who does enjoy games, was much better at figuring out my words. I tried using sign language but my family does not know sign and apparently they didn't have anyone that they were willing to find to help me. How is there no paper to write, an alphabet board to use, or any form of communication board. (Yes, you know me - this will go into my advocacy tips book that I hope to eventually write.)
At some point Tuesday afternoon, I could sense a lot of people in my room. I could not open my eyes very much. But let's face it, even if my eyes were open, without my glasses, my visual acuity is terrible. I could not communicate. A doctor asked if I could hear him and I was told that I shock my head no, which he responded that I clearly I could hear him since I was responding. I was in and out. What I do clearly remember was my brother asked, "Tara, are you a Gator?" Without pause, I shock my head yes and the room filled with laughter. Even in my lowest moments, I still bring laughter to the situation. That is the last thing I remember.
From that moment, I had no recollection I was in a room. I had lots of serpent type animals all around me. They changed color from black to purple to red to black. Sometimes they had faces and other times just snake like creatures moving around. Other times, I was floating in a sea of colors. All of these images were very vivid but nothing concrete, everything was very artistic and abstract, which makes sense because at some point my Nana became very close.
Another side note: Nana is my mom's mom. We were super close, closer than anyone else. Maybe it is because she watched me after school when I was little. Maybe because she went through my childhood cancer with mom and I. Maybe because we had similar interests. I do not know but she was my world. We lost her very unexpectedly.
Ever since I lost my Nana, I have felt her near me. There are times in my life when I feel her closer than others but this was different. My Nana was with me. She was guiding me back to life. She was very clear that I needed to get back to my mom, my family, and my life. I know she was holding me. She was very real and very clear, it was not my time. I think all of the artistic illusions were her art. She told me she loved me and kissed me on the forehead. Then I "woke" up. It was to the same situation (dark room, tied to a bed, couldn't communicate) but this time it was just my mom. Again, I could not really keep my eyes open but I started to try to write messages to my mom. She was struggling with understanding so she decided that she was going to pick up an alphabet board if I wasn't off the ventilator soon. She finally said, "Tara, do you know today is Saturday?" I had no idea. The last thing I knew, it was Tuesday. I lost an entire week of my life. I tried to point to my lip, which they interrupted as me trying to take
out what was in my mouth (what I now know was the ventilator). What I was pointing at was a cut on my lip that hurt a lot. It was very frustrating to be so misunderstood. It made me reflect on little children who are trying so hard to explain something and we just cannot get what they are saying.
Recount of What Occurred in My Missing Days
I cannot even image how scary that week was for my mom who was watching me as well as the rest of the family and my support network of friends. The doctors anticipated I would be on the ventilator for 24 hours. They were hopeful with my communication Tuesday afternoon but then I turned. They could not get me to breath on own nor could they get me to come out of sedation.
How Did I Get There
Apparently, during my procedure my blood pressure dropped so low they had to end the procedure and take me to recovery. In recovery, I began hyperventilating and my carbon dioxide levels spiked. They tried to put me on a bipap machine but they could not get me breathing. My mom knew something was wrong because after an hour she wasn't hearing anything. Then the doctors came out to her and asked what my wishes would be...a question that should not have been asked because they have my wishes on file. They were debating between a tracheotomy or putting me on a ventilator. (I am happy they did the vent over the trach.) She reminded them of the conversation I had with my doctor the week before where I had told him they could do whatever to save my life. The only they cannot do is leave me alive through machines. These are things a 46 year old should not have to think about.
Why Did I Get Here
This is the million dollar question. The doctor talking to my mom told her I was extremely malnourished and dehydrated, so much so that I had muscle loss. Because I was so weak my body just could not come back. This of course sacred my mom...we will revisit this. Other doctors started to examine if this was neurological. Other doctors examined if it was cardio. Was it the cancer? Did my scoliosis contribute to the problem? I am a medical mess. I have so many issues with so many parts of my body. They shared with my mom a lung issue I have. I knew about it but she had not remembered. The reality is since I was a small child, my body has been impacted by different things and it did not get any better as an adult.
The Events Unfold
Mom says watching them take care of me in the ICU was crazy. They
were very attentive in their care. At one point, they were sending me
for an MRI of my brain. She said it took hours to prep me because of the
number of machines I was hooked too. I had multiple IV lines plus my
port accessed. One of the IVs was actually sewn into my arm. She said they picked me up with a crane type machine to
move me across the room. I wish she had taken pictures.
On Saturday, the doctor came in and I was coherent enough to begin understanding what was happening. I was still on the ventilator but trust me, ready to get off of it. He was concerned to take me off the ventilator because he didn't know if I could breathe on my own. It wasn't looking great but I was determined to prove to him (and everyone else), I could do it. He explained that if they took me off and I could not sustain breathing, he would have to put me back on it. My mom was worried about me coming off it but I put up my hand and nodded to him I wanted to try. Pretty sure she didn't like that. After all, she had lived through this all week, I was just joining the conversation. I convinced him to try. They switched me from the vent to the bipap machine. It was hard. I tried not to let anyone know how hard it was to breath because I didn't want to be on the vent. I concentrated on breathing. I successfully passed and was off the vent!!!!!!!!! The bipap was no fun. I still could not communicate. They would let me breath with no machine for a short time. I would last for as long as they would let me but then go on the bipap. During the night, the bipap machine was making a lot of noise. This woman came into my room and bonked me on the head to get the machine to stop. After that, my head hurt. My head felt so heavy I could barely hold it up. The nerve endings in my hair hurt. The doctors kept minimizing what I was saying but it definitely was challenging.
It is good I have no shame because being in ICU you have no control who sees what. My very nice looking amazing male nurses had to clean me up each day, change my sheets, and take care of anything else that might occur. Fortunately, I really didn't care because if I did, I would have been in trouble.
On Sunday, I finally was released from ICU to the step down unit for more tests and observations. At this point, I began getting the discussions about my eating. The doctor had convinced my family that malnutrition was the top problem and me refusing to eat was the problem. I admit I was malnourished and certain was dehydrated. Truly, I have been dehydrated probably most of my life. But they did have to give me five units of fluids to hydrate me. I know nutrition was a problem but in my defense, I had been sharing this with all of my doctors expressing my concern. I fought against the idea that I was doing this to myself. I physically could not eat. It was not a control issue, it was not in my head, I truly could not eat.
On Monday, all of the different specialties were tripping over each other. Mayo truly pulled out all of the resources and I was being tested for everything. I had to be cleared to begin eating because I had been on a ventilator, which lead to another specialist coming in to do a swallow test. Something I went through about a year ago and the previous week. If you tell them you cannot swallow pills, they do not believe you can swallow other things. I finally got cleared for food so that was step one. The therapist who did my swallow test confirmed with me that there are a lot of people who can eat just fine but are not able to swallow pills. She told me I am not as odd as they tried to make me feel. Again, pushing it off as a mental issue when she says it is not mental it is actually physical. I have plenty of mental things going on and am highly supportive of therapy but these things are not them. Physical therapy had to clear me to get out of bed. Since they had not cleared me yet, I had to go to my neurological test being pushed in my bed (also the way I was delivered from ICU to the step down unit being driven through the hallways on a bed). When I was coming from ICU, the guy "driving" me said the battery was dying to the bed and he hoped it would make it to my room. The two women Monday morning were having similar issues. They got me down to the floor where my tests were.
Neurological Torture Test
The test begins with the techs using electrical prods to stimulate your muscles to see if the brain sends signals. They start with a low volt and then progressively go higher. They do this from the ankle all the way up to the forehead. It was very uncomfortable. I just meditated my way through the test. Although, when I would close my eyes, I was still having hallucinations. First, there were two movie like Italian Gangster looking men walking through the room my test was in. Then, there was a small group of the southern Red Hat Women Society women with bright purple dresses on and purple glitter everywhere. They were just sitting and talking to each other next to me. Clearly, none of this was happening but it was so clear and vivid. So if the first test wasn't bad enough...here came a doctor to administer the second part of the test. For this, he inserted small needles into me, then had me move the muscle around while he listened to it. It was wild to hear the movement but it was painful. Just during the movement. When the test was over, one of the women came back to take me back to my room. After all, the bed had been charging for an hour so she didn't think there would be any issues. Wrong! She started to push me down the hall and it was clear this bed had no power. She put it in neutral and bless her heart pushed me down the hall. We went from one side of the hall to the other. People moved out of our way. People offered to help get her down parts of the hall. It was like being on a Mr. Toad's Wild Ride. We made it back and my bed was sent to maintenance. The battery was dead! All of the tests came back clear and the breathing issue was not neurological.
Physical Therapy
Physical therapy did clear me to get out of bed. Each day they came in and we went a little further. Slow and steady. I was just happy to be cleared so I could start using the rest room. Although I did learn a new good trick for bed pans so I am set for when I get older or just too lazy. Each day they added new exercises before I had master the ones the day before. They ordered me PT and OT (occupational therapy) for home. That was over a month ago and I am still waiting.
Nutritionist
We finally had the nutritionist come visit. It took days. Meanwhile, my family continued to "discuss" my eating issues. When she came in, her perspective in looking at everything that I was slightly malnourished. She gave me a goal of 1200 calories a day and increasing my liquids to 64 ozs (I am not sure, except during the diabetes diagnosis, I have every had that much liquid in a day). She gave me hope that I wasn't wrong. I truly feel the muscle is loss is more from immobility for the past year because of the breathing and physical limitations and not the lack of food for two months.
Seeking Out Your Doctor
While everything was going on, I wasn't hearing from my oncologist. I was trying to get my palliative care doctor to reach out. I knew I was in trouble with the eating and needed help. First, I wanted to know, which doctor exactly is the one to help with this because I had been telling everyone it was a problem and I kept getting the "it's the cancer" answer. He eventually stopped by. I felt bad because I know I was bugging him and the nurse. He let us know that he is the only oncologist palliative care doctor so he is busy but moving forward would be following me more closely. We had a good meeting, I was cracking jokes, which he said was something he liked about me (the ability to keep my sense of humor). He talked about a few different options to kick start the eating that we could try. He ultimately ordered a medication that I started.
The Remainder of My Stay
By Tuesday, they had cleared me of different things. They did decide my scoliosis over the years has misshapen my lungs, particularly the bottom of the lung where most of our breathing occurs. Combined with the cancer on the lining, they feel this is the major issue with my breathing. They ordered a bipap machine for home. I am suppose to use it whenever I sleep (naps or sleep) and if I get in breathing distress. I had to go home with the machine and since I did not have a sleep study, it took additional paper work for the insurance. Additionally, the person who has to set up the machine was taking Wednesday off so I ended up having to stay in the hospital two extra days waiting on insurance approval and his vacation. That was crazy. Each day, I was getting different nutrients in the IV based on the blood work. Additionally, my medications kept changing. The poor nurses had to handle all of my questions of who ordered it, why was it ordered, what did it do, and then my response to taking it or not. One day, it took all day to get my IV meds. The alarm would go off every hour as one bag finished and the next would go. It was a long few days. Meanwhile, some nurses put the bed alarm on so I didn't get out on my own, while others let my mom help me. My last day there, the nurse set the alarm too sensitive so each time I moved that morning, the bed alarm went off and I got spoken too by the nurses station to stay in my bed. They didn't seem to believe me that I wasn't getting up. Then one of the doctors came in to listen to my lungs. I warned him that if I moved the alarm would go off. He didn't believe me, I moved, the alarm went off, and the nurses spoke to me again. He said, he was in there and it was fine. He lectured me on eating, which I did not enjoy nor agree with.
Positive Aspect of this Event
I went on a technology shabbat. A few years ago, I read 24/6: The Power of Unplugging One Day a Week by Tiffany Shlain, where she challenges individuals to put down the technology. This is something I had been slowly trying to think about how to implement it into my life. This event put it into gear! My mom had taken my phone while I was in the hospital. She kept people informed. She also wanted to make sure I wasn't working because this was my year end and the absolute worst time of year to be out, except for the fact that I have an amazing team who had worked hard all year and we were well prepared for the end of the year so I had no concerns. Once I was out of ICU, she asked if I wanted my phone back, I said no. I opted to not have my phone because I really wanted to concentrate on my health. While I was so appreciative for all of the love, I was so tired and didn't feel that I had the energy to be responsive so I turned out. It felt good turning off the direct connection. I even slowly brought back the outside world. I spent most of my time watching Golden Girls and other comedies like that. I tried not to watch my crime shows because I did not want to offend any of the people coming in and out of my room. Although as soon as I got home, crime shows were back on the TV.
Going Home
I finally got to leave the hospital at 5 PM. We stayed the night at the hotel and then drove home Friday morning. My babies were happy to see me (within one minute of entering the house) - this is the longest they had ever been left:
For tonight . . . I'm just sayin' XOXO
No comments:
Post a Comment