As long as your doctors hear you and hear what you are saying, you have the team. from my Lessons Learned: The Doctors

When your team doesn’t hear you, your tongue is swollen unable to communicate except some weird sounds like you are speaking another language…then, all that there is left to do is cry.  I have to say that yesterday was probably up there on the top worst appointments I have had since cancer. Was it a full moon? First, while waiting for my appointment, I overheard a conversation of a patient who had an appointment, not ending up on the schedule. I double checked and the front staff assured me that I had an appointment and scan scheduled. They would check to see what is going on. I decided to go to the restroom and saw the technician who has done over a dozen of my scans. I attempted to ask her if she was ready for me in the clearest voice (making the assumption that I was not just a medical record number). I guess she understood and immediately started screaming at me that she is not doing my scan, I was not on her schedule, and debated (with me not responding) that she didn’t have my chart. It was such a scene that nurses from each hallway ran to my rescue. I just stood there in disbelief while nurses were running to get my doctor, other nurses chasing the technician while she was still yelling that I was not on her schedule. I said in my clearest heavy tongued voice, “hey, I am the one with cancer, so anyone going to do my scan or do I need to walk into the hospital”.  The other nurses guided me to the scan area and said they would find the doctor and someone would do my scan. I undressed and waited with the lovely paper sheet draped over my legs.  My doctor walked in looking confused, the technician walked in mumbling something, then another medical person walked in (just looking underneath the paper sheet). Normally, with the party in the scan room, there are introductions and other fun pleasantries. There was none of this and I kept wondering who this guy was  and why was he fixated under the paper sheets when there were a million other areas to look (LIKE THE SCREEN!). Technician admitted she did not find my chart and asked me what she found last time. Glad I was up on the medical speak, so I did respond as clear as possible with the findings of last time. Then, the group looked at the screen, said to me, “yes, that is it, spread, fluid, measure this, that, inflammation, can’t you see?’ They looked at me as if I did speak that language and I said, “what is it?” . I questioned if the fluid could be the cause of my pain. Yes, and yes were the responses. Another question to me again, “implant on the dome or posterior of the liver?” I responded with dome and then there is a bunch of measuring.  Miscellaneous guy still looking underneath the sheet. Doctor quickly said that I did this before and I can do it again. What was I doing? What were we doing? They walked out and told me to get dressed while I grabbed this damn paper sheet and used it as a giant tissue. At this point, I found my only solution was to return to the hallway to find some help. The nurses who kept apologizing over the previous episode got Jim. He was confused, but could tell I was frustrated and couldn’t express myself. Not to mention that I have had no solid food since Friday. I made some noises in between my tissue blowing. He knew what to ask and had the same brush off. We were confused and hugged. Was it because there were no answers or because I am now moved to a different category of rolling the dice?  Was it just one of those days and it had to coincide with me having no voice, the technician not wanting to do my scan, or all of the above? No one was listening when one of the drugs mentioned was one that already failed. No one was listening when another drug was mentioned that I was extremely allergic to. No one was listening when the nurse asked about my side effects and complaints. I was screaming on the inside and despite my tears or silence, no answers happened. I started tossing out chemo drug names as best as I can pronounce. I am thought to be understood as another nurse appeared. She told me that my oncologist was out of town for 2 weeks. Funny, how he had just sent me a text before he returned on his flight back from NYC. I was confused. She explained that my case will be on the tumor board once again. Doc responded that I cannot do anything until my mouth sores are cleared up. Too bad, so sad, no “chemo for you”. My general idea from the entire visit was that my cancer had spread. On August 1st when I talked to my nurse at chemo and asked her about my damn pain, she mentioned that it could be exactly what they saw fluid caused by the cancer, but “she is only the nurse’. She listened.  I know this because in just days since my last blood test, my tumor marker is now the highest it has ever been and up 100 points. Plus, I have no more organs to remove. I thought to myself that it has been over 2 years and I am back where I started. I start doing my calculations and running numbers and charts in my head. Without food, I am finding no results. We returned home. I felt too bad to do anything more for the day, plus I did know that my oncologist would be back today. It took me an hour, but I managed to get down two cups of broth. I took my narcotics and tried to sleep.

During one of my waking moments, I decided enough with me not having answers. I needed copies of the scan and as soon as the offices opened, I would email blast all nurses and doctors for more appointments to have someone listen to me or hear me. After also realizing each time I turned in the bed, that what I thought felt like my organs moving around was just this damn cancer fluid sloshing in my belly. Oh great! I think I needed more narcotics to not feel this wave of cancer floating from side to side. I began my day with my tongue less swollen and decided at almost 6am that I was going to eat a scrambled egg even if it took me three hours. I did it. I am going to confess that I just kept swallowing bits with water until it went down. Whatever it takes, I will do. I send emails and requests. I did get answers from the second opinion at Hoag who can fit me in even though he insisted that this past drug combo was the ticket for me. I also got an email with the help of another doctor from UCI who can also see me. I felt if I had a plan of anything, it was better than sitting doing nothing. Plus, I am all about info and all my team knows that, so having less info did not help me at all. I continue to text and email UCLA. I finally get a call from my oncologist who cannot pull up any record from me having a scan on Monday. He speaks of some options, and does hear me when I say, “quality of life” and side effects. I repeat myself often using my best voice, but even he comments that I sound tongue tied. He is going to make some efforts and call me back. He said the soonest I can start any chemo would be next week as long as I don’t have mouth sores. So, let’s see who listens and who comes up with some options. Hoping that they all agree with a plan. In the meantime, I will go back to bed and plan what I can eat next.

On a side note, a special gift of boo boo buddy the frog placed in the fridge seemed to be just what I needed to stop my head throbbing.  When Alex returned home (after swimming, playing), he saw the frog, looked at me, and said, “mom, I need that frog to help my worries go away”. I asked him if it was my crazy hair, but he said it was my grey face. Guess, I have the cancer face. Alex said the frog helped him…whatever it takes.

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One Response to “As long as your doctors hear you and hear what you are saying, you have the team. from my Lessons Learned: The Doctors”

  1. terry fierle Says:

    joanie…i am praying daily for u. we all are. u r a remarkable gal with strengh that i can only be in awe of.

    love u joanie,
    terry

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