“There is a bit of insanity in dancing that does everybody a great deal of good. “ ~Edwin Denby

Wednesday, I felt like I was on a game show. Behind door number 1, surprise another baked good or surprise some bagels appearerd. Thanks to all of you who have taken the time during your busy week to help me and the amazing nurses at the chemo matrix. Our day began with “Dance Thursday”! This is a new tradition where Alex picks his music and we dance around in his room for 3 songs. I cannot help, but to smile and laugh just thinking of the image! Some of you know what an “excellent” dancer I am?! Even Alex commented, “Mom, your dancing is funny.”

Our drive up was full of laughter oddly enough. I had to call the specialty pharmacy for a drug which costs $5k. It was one of those forever automated voices and I really needed to speak to a person, so I decided to make some strange animal noises combined with a made up foreign language. Of course, this blew up the automated phone system, so I had to start the call again. On Weds, since UCLA had not billed for me chemo which is about $8k or more, we had not met our deductible. I did some negotiating with my local pharmacist at Walgreens who is so amazing and patient. We figured out what drugs I would need in the next days and the rest she would hold for me.

All my favorite nurses were there (come to think of it, I am only not fond of one or 2). I had not seen one since I started this 3rd round. She loves all the “junk” reality t.v., so she was so excited to see me. I was informed that it was going to be crazy like last time. One nurse joked that they were giving away toasters this time. They were thrilled to see the baked goods and even happier that I managed to only lose one pound! I am certainly working on it. Without the nausea, I can do some eating even though my body is messed up! Food is still not my friend, but I do what I can.

Then, the ride began the slow descent to emotional craziness; my blood counts almost too low, need a transfusion? Geez, come on platelets, onward red blood cells, and I cannot live in a bubble, white cells (Anyone listening). So, we started the waiting game for the doctor. Meanwhile, the place started to get crowded and next door I saw a young man in his 20s as ghostly white as my great grandma used to look. She would wear so much white powder that she looked like she was ready to perform as a clown on stage!  Only this guy was in pain and alone.

As soon as the thought crossed my mind, the manager came to see me alongside a young man wearing a UCLA tshirt. She introduced me to Alex who will be a volunteer on Thursday. She told him this is all because of “Joanie’s emails and efforts that we will now have volunteers.” Of course, I thanked her and had to mention that idea of a punch card idea. This card would be punched each visit and with so many visits we get a mug or tshirt. She asked Jim what does he feed me. Doesn’t she get that this is me? I told her I wasn’t kidding. I haven’t given up on that idea. I began to talk to the new volunteer after he received his 10 minute training. Funny that his name is Alex and even funnier that his current major is bio chem, but is unsure if he should be pre-med. Jim and I talked to him about the benefits of specialized fields in medicine other than oncology! He explained he was from San Diego which is our favorite quick vacation spot. I decided to give him the real facts as he asked about the “beeps” and how long patients stay. I gave him the basics plus the overall feeling, but did not warn him of the crazy patients. No need to have him quit! He explained he wanted to interact with patients. I was so thrilled that my efforts paid off. He started to help the young man next to me and I was happy to know that I had made a difference! Step one was done! He did comment about the strange design of the matrix pods and laughed at my Lady gaga interpretation.

I kept asking for my last week’s report, but somehow no one wanted to give it to me. I should have gotten the clue. I joked that I had made a bet with the doctor and I really wanted to win this bet. My nurse’s face was a giveaway. I joked and said that I lost that bet and glad the stakes were not high. She handed me the paper with the record breaking number. She told me I am her hero. I tell her she is mine as she proceeded to jump to the pod next door to the guy who was now in a lot of pain. Now, I realized that team UCLA must have all known about my record breaking tumor marker which from last week was now back to my pre-surgery number except this time I did not have anything that could be removed. Each nurse had visited me and checked my IV. I never needed this much checking. While we waited for the doctor I talked more with Alex, the volunteer who talked to me about the music that myAlex now enjoys. We talked about travels and his friend is a math major at Cornell, so I talked about what I did with my math major. I  also gave him a summary of Club Med ( g rated, no tambourine dances, no coconut tops, no topless stories). I also told him to go abroad and then  told him it depends on your major which I had to switch to math from Chemistry. This way I took advantage of the programs abroad lived outside London while I attended Univ of Reading and classes at Oxford. Of course, I did have to add that most math majors abroad are very odd and barely change their clothes in the winter or shower. He had to go help patients who really needed help. While I am forced to face my own thoughts, I needed my headphones and played all the words with friends games. The waiting game sucks. I told Jim that when my infusion ended that I didn’t need to talk to the doctors. Now, my nurses are panicked and started paging the doctor.I convinced them that I would be back next week or talk to him over the phone. Then, my cousin who looked fabulous walked into the room and diverted our minds for a few minutes!

Finally, my doctor had been found and we talked in a secluded room. I felt that either he really had some bad news to tell or he thought I was going to have a meltdown. He looked worse than I felt as I was in my anger phase. His eyes were sad and pained. He looked frustrated, but started with his standard speech which if I had been in a different frame of mind I would have screamed. Instead, Jim and I exchanged glances of “oh, please, spare us “the speech”.  He told us that he would call us last night to let us know if the tumor marker changed directions. He had given us a list of 3 drugs which Jim started speaking the same language while I sat with my half way smiling half way angry face. I told him that I never had this happened once I started chemo. He gave me the standard, “some people like houses on corners, some people don’t” or basically, the standard of “some people have this happen”. I did not care about PEOPLE. I cared about me! We changed the subject by telling him about the new volunteers. He finally smiled and said, “You are such a trooper.” He put out his hand and I just grabbed his hand while I hugged him tightly! He smiled again. We left the place for some oxygen. I started crying a little bit, but fell asleep in the car. I took all the pills they told me to take and fell asleep for hours. When I woke up, it was as if it was a dream. The phone rang and I heard my doctor’s voice who sounded like a giddy school girl yelled, “It is down, it is down, just a little bit, but this is it. It is working!” Yahoooooo!

Today, I am faced with the same old stuff, but now know that it is all worth it! I will take the pills and attempt to eat. I will sleep and dream of “dance Thursday”. Enjoy your weekend, my fog will return soon. Reminding you to make the most of your day and enjoy every moment.

 

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2 Responses to ““There is a bit of insanity in dancing that does everybody a great deal of good. “ ~Edwin Denby”

  1. Joanie Says:

    who knows why this text posted this way, too out of it to fix it…so sorry for the messy post.

  2. Melissa Fromme Says:

    Joanie, perhaps this next week you’ll set another record–for biggest DROP in tumor marker in a week! XO

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