Visiting the island of negativity and “hello eyebrows I’ve missed you”

My chemo day began when they called me from the Hoag cancer center to say they were overbooked. Either I could come at my scheduled time and wait for 2 hours or come 2 hours later. Of course, I agreed having little option, but I didn’t think things through. My other brain (Jim) was working in LA so I couldn’t ask him. It isn’t a hair appointment? How can this be? I have been in this same place at UCLA and it happens. I started with a new nurse who seemed nice, but a bit slow going. After waiting an hour, I finally had my blood drawn. Normally, the note in my file indicates a warning about me that I am a patient who is partnering with docs and know my treatment better than docs at times. There is only one me and they have 100s of patients. I saw my nurse with the paper grabbing the phone. What was up with that? I got up and asked for the numbers. My platelets were 79k and they have to be 80k for chemo. AT UCLA, chemo is the priority and they tend to take more risks. Platelets have to be 60k. So, I can promise that I won’t use any knives or weapons. I also saw my ANC is 1.3 which I thought had to be 1.5, but now has to be 1.0. These are the white blood cells that fight infection. I don’t feel comfortable getting chemo with no immune system. (flash back to pneumonia which I am still doing inhalers from my May infection/hospitalization) I talked to the doctor (local) who said it was fine and added the new drug. This was where it got confusing. The doc then told the nurse that they won’t add the new drug (the third). Here we go, confusion, delay, and frustration. I put on my “are you kidding,I’m in charge of my own body, and what is up with making decisions without telling me.” I freaked out my nurse and become so agitated that I placed a call to my dear UCLA doc and called the local doc explaining that I was getting 3 drugs. The order was faxed not once, not twice, but three times wrong. I decided since I was not attached to any IV that I needed to get some of that ocean air. I told Jim that I was leaving. He looked at me confused. I walked out and considered just jogging up to the hospital. My UCLA doc called back immediately, but I had left my phone in the room. Jim was unable to find me, so talked to my doc. He finally found me and I saw that he was more worried than ever. Of course, in my rant of frustration I asked for the charge nurse and nurse manager and mentioned the pharmacist (my new friend and fan of Breaking Bad). I had now frightened everyone and had been handed off to the charge nurse. The charge nurse asked me why was I causing so much trouble today as she smiled and tapped me gently in case I smacked her?!  It all got settled so I got my three drugs.

The infusion made me nauseous and I forgot this feeling of being over drugged with poison. I started taking the pills. One drug done. Second drug done and Alex phoned me asking me when we were coming home. No such luck today and he had rides planned to get to tennis. My secret hope was dinner time. The third drug started and I began to feel as if I ingested something I was allergic to (like strawberries). Jim (my fake doc) advised me to take Benadryl. They often give this in IV. I took it and was immediately better. This wasn’t a good sign for many reasons. The last time I had this drug (a year ago), I had a slight allergic reaction and then anaphylactic reaction to another chemo drug. We were concerned, but decided to wait and see. Dr Jim started his analysis I saw by the look on his face. I got home too late to eat and slept through the night. Luckily, Jim woke me up to take pills and drink a glass of water. I decided in my delirium that I will never allow myself to get overbooked and move my appointment ever again. He who screams the loudest gets the appointment. I drifted off to sleep.
I woke up the next morning with a swollen lower lip and itchiness. Oh great. I took more Benadryl and was so over drugged from the trio of chemo. I slept another day off, but decided to drink as much as I could in my waking minutes. At this point, I had sent a text to my UCLA doc, an email too, and put a call into the drug company who makes this drug. I figured the doc would do the same, but he has more patients than he knows what to do with…so since my lips were movable and not too swollen to speak, I figured I was good enough to take notes. I took great notes on all the percentage of people who have explosive diarrhea followed by a zillion other issues. My issues were listed, so I wasn’t completely going crazy. Would this reaction lead to further reactions? Would this reaction lead to a reaction to another chemo drug which I cannot afford to remove any drugs off my list that are potentially working?! I cannot afford to have an anaphylactic reaction like before especially since there are zero doctors with only a few great nurses. Hey, I saw someone die at the Hoag Cancer center, so I would rather not have it be me! I decide to escalate my complaint while trying to flush this damn chemo out, but it stays in your system longer than any other chemo. Yipee?! Of course, I cried out of frustration and anxiety. Plus, I forgot this horrible toxic trio feeling. It seeps out of your pores. You automatically look “chemo-i-fied” without really wanting the “look”. As I saw my pale/grey look with drugged eyes in the mirror, I noticed a few sprouting eyebrow hairs. Excitement! Elation! I missed those little hairs! Since I had stopped the drug that wasn’t working, (it was the one causing the hair loss) I guess my hairs are starting to sprout. It will be another adventure to look forward to, but I have no time for that. I am on the mission to get in touch with my doc. He finally calls me back and says, “STOP the drug!” Of course, this leads me to stopping the drug at all locations including local doc and confirming the cancel with Hoag Cancer center. I did all my job, but I am not confident of anything.
All I know is that the past days were full of visiting the island of negativity. I am conflicted with being so thankful to being alive, but at the same time frustrated with my every day consuming cancer job. Of course, it is worth it. This weekend at services I really read the words that I never really read before. I could do without the “stoning” and old language which is so distant from my reality. Other words spoke true to my heart. When I think about those who have gone like my cousin, the reality hits again and the anger floods my face with redness and tears. When a man who has known me for 11 plus years sits next to me asking me, “why you? how can this be?” I don’t have the answer, but just respond with more tears. While I asked for my forgiveness, I really asked for my life, my continued strength, the ability to continue my fight, and enjoy each day as much as I can. I was silently screaming hoping someone would hear my screams. Instead, I tried to find my peace and found it again walking along the beach and the ocean. Deep breaths, big hugs, much laughter, and I am off the island of negativity. Today is a great day! Sunshine surrounds me! Please find your sunshine today.IMG_20130915_162522_573

4 Responses to “Visiting the island of negativity and “hello eyebrows I’ve missed you””

  1. Alii Goedecke Says:

    Sending sunshine today and everyday!!! Ali

    Sent from my iPad

  2. Diane Peters Says:

    I’m so happy you have sailed away from the island of negativity! You are positive, beautiful, inspirational and loved by us all! Sending prayers for continued strength and courage and good numbers! Love you my friend! xoxoxox

  3. Pendar Says:

    Sending you love and prayers! Also love, love, love this picture of you and Alex!

  4. Leah Says:

    love the picture!!

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