Progress Report 2-11

Week 13 – Happy winter everyone, it is official in Cincinnati. We had our first snow last week even though my weather forecast gadget on my desktop is reading 84d. I am sure it is 84 d somewhere.
I went in yesterday for the 11th treatment. Sharbel is not in town this week and even though Karim was available, not to mention I feel totally capable of driving myself, my neighbor and friend Nadine insisted and promised that she had absolutely nothing else better to do and would like to go with me. I detected a little white lie there but the new me who has learned to receive more and resist less accepted the offer. Besides it gave us the chance to visit before she took off with the snow birds for the winter.
The character of the week is Joan. I had met Joan a few weeks back while getting our appointments scheduled. She stood tall next to me and when I looked at her I had to tell her how beautiful she looked. Joan was totally bald but her face was made up and she really looked beautiful. There are only 2 places I know where you can walk around bald and no one will bat an eye or judge you; this clinic and the wellness center. She told me the hat was too hot. She was devastated by her hair loss. She loved her hair and it was long to her hips. She donated 18” to “locks of love” the organization that makes wigs for children with cancer. I had donated a measly 6” the last time I had to go through that. She went on to tell me about the headaches and scalp pain and the emotions she had been going through to which I kept nodding my head. At the end I told her I knew how it felt; I lost mine twice. She looked at me with wide eyes and told me she could not imagine going through this another time. Well the truth is next to the cancer diagnosis loosing hair was the most traumatic experience I had. Not only do you lose your identify but you are reminded every time you look in the mirror of what you are going through. The second time was not any easier. It is so devastating that whenever there is discussion of different treatments the first thing I ask before success rates is whether there will be hair loss. On a side note (this is for you Tami B.) here is a little advice if you have a friend going through this; don’t tell them it will be ok and it will come back. There is no comfort in that. We know it will come back but meanwhile it truly sucks. So just give them a hug, let them cry and maybe buy them a cool scarf. So you see I count it as one of the biggest blessing bestowed on me that I have my hair though a bit thinned as I go through this round and learned to love it even if it is not behaving the way I want.
Anyhow I saw Joan again last week and learned that she was switching treatment because of some really bad side effects. She likes to paint at night but had not been able to because she is always tired. Well with the new treatment she is getting Decadron (the energizer bunny drug) so I told her she will be able to paint now since it may keep her up. Interestingly Joan says she is not a painter but she paints for therapy. I guess that is like me saying I am not a writer but I write for therapy. When I saw her this week in the waiting room the first thing she told me was she was able to stay up at night and paint again finishing 2 paintings; The silver lining of treatment.
In the suite I sat next to her. She was alone and she said this has been going on for so long (7 month) she is having a hard time getting people to come with her. My heart sank a bit as I thought about the arm length list I have of friends who if I needed will be here before I completed the word HELP and once again I counted my blessings, remembering that my husband flies from California to be with me. I was however glad to hear she got a ride, her treatment is long and causes drowsiness as the drug is infused in alcohol so it is like having 5 drinks, but none of the fun. Her cancer was caught early but is a very aggressive and so is her treatment. She is having a hard time with this treatment too, all the bone aches, yes I know I told her, I had experienced that too and for the third time in one seating I counted my blessings and was grateful for going through this treatment without pain, fatigue or any other discomfort that I could not easily manage. I forgot to ask Joan where she was from but her accent tells me maybe the UK. She lives by herself though she has a daughter and says she stays home and does not go out. I had to put in a plug for the Wellness Center. This place is made for her and I know she will benefit from the support she can get there. I promised to get her more information next Monday. Joan kept us entertained with her story of the worst biopsy ever performed and has what I believe is a legitimate case of malpractice. I say entertained because she had a way of telling it that made us laugh even though there was nothing funny about a punctured lung. She is well now.
Did I say last week that the treatments where settling into a mindless routine? Well I am not sure there is such a thing. As we were gabbing with Joan I realized that 45 minutes had gone by and I was not yet hooked up even though one of the nurses had announced upon my entry that she had my chart. Well I asked if they forgot about me. Oh… both Andee and Karen said that they were wondering about me? Was I getting treatment today? Do I have a choice I asked? Is my drug not offered on the menu today? After some investigative work it turned out that my file was put away by mistake. You think I would be upset but on the contrary I took that as a divine sign that maybe not in the far future my file will be put away because I will be done with treatment, this was just a trial run. The funny thing is I had a dream last week that Andy examined me and closed my file sending me home telling me I didn’t need treatment anymore. In the dream I was surprise that Andy could make that decision not the doctor. Well I had seen Andy earlier that day. The nurse that finally showed up was new (to me and apparently to everything else). She got me hooked up with the pre-meds but then when it came time to push the drug she looked a little confused, and unsure of what to do next. As I told you before, this drug is highly irritating and can cause necrosis of the skin if it touches it so you can imagine that I was a little nervous. Andee was supervising from across the desk and I kept eye contact with her. I knew she could see the anxiety in my eyes. She was feeding the nurse instructions that sounded like they were trying to disarm a bomb. At that point I had to assume my meditation position closing my eyes and going to my happy place. Andee finally came over and helped the new nurse who apparently had never done this before. She needed a third hand. I never noticed what the nurses did before but I know none of them had 3 hands. There is a tricky maneuver that has to be done to make sure the drug is going through and all the nurses I had before made it look effortless sitting and chatting with me while doing it and me never noticing it. I suddenly realized the degree of skill those angels have. Thank the Lord Andee finished me up and I felt bad for the new nurse because I know one has to learn somewhere. I apologized if I made her nervous. I won’t lie though I was relieved when it was all over. I think my friend Nadine got more excitement then she bargained for.
Here I will end up by asking you all to as you read this to send me you strongest most positive thought. I am getting a scan tomorrow, but won’t know the result until next Monday. I will confess that I am counting on a repeat of my first miracles but I am also at peace with whatever will be sent my way. The result will not change the way I feel in my body, my mind and mostly my heart. The rug has been pulled too many times from under my feet and to survive I learned to fly. The view is pretty awesome for up here.
I will keep you posted
Much love