“You aren’t the typical cancer patient. This is why we like you.” (nurse)

I have been thinking a lot about having cancer or living with cancer. Frankly, I am tired of this job. I have been keeping notes on every reaction and documenting all the pills and potions. I have a second binder which is as big as the first one and we are only in October. It is getting blurry and I have not written anything down since last month. Of course, this has caused me many issues, but I am being a rebel against my system. I am not sure this is the logical thing to do, but what is logical for someone to have ongoing chemo since April 2010 or was it May? I was thinking that I don’t want to have this cancer define me, but it does by consuming my every minute. Damn my efficiency! I don’t write things down and I cannot remember as I emerge from my fog. Who suffers? Of course, being a rebel you pay the price. So, I spent a couple days living in the bathroom.

These days I have brought my boys down my crazy path. Alex says he understands, but wishes that I wouldn’t act crazy. Jim just takes a lot of deep breaths and gives me many hugs. I know he wishes this all would stop. I had my breakdowns because who knows what triggers what or why I start thinking a different way. I think it is the frustration of it all. No one can understand what we deal with every day. Some days require so much effort to just walk to the bathroom let alone exit my house. Other days, I have some energy, but it is as if I am one of those electronic games losing power. Unfortunately, I am unaware of the power loss. I used to be better at this. I think since I had been “real” sick and this last chemo that I lost my ability to judge when too much is too much. In some cases, I just have to do what I have to do. In other cases, my desire outweighs my “battery pack”. I was unaware of how bad my last reaction was just like I was unaware of how much energy it required to go to Alex’s school for a mini conference.

I know I am not making much sense these days, but I think it is because I have no clear answer and there are many unknowns.  I had to have a meeting with Alex’s teacher since he explained he had the same level of frustration since the beginning of school. What I did not consider was the logistics of the meeting! Alex informed me that my make up would not really help since I should not look like a clown.  I thought we were meeting in the office, so I planned my walk from the parking lot. As we were speed walking to the teacher’s classroom, I could barely catch my breath or keep up. Luckily, either my cancer look or cancer job has put off my “escort” so he starts on some random subject making no sense to me about birthdays, picking a nose, and camping?! I kept thinking that my chemo fog was back, but I am still unclear. I forget since I have had cancer for so long that it still is like the olden days for some people who used to and still do whisper “cancer” as if it is either contagious or just to frightening to say out loud. I do forget and often joke about things like not breathing which others do not find funny. Our meeting was very special and I tried to maintain a sense of calm as I looked at my notes. I felt like I was a student too. Alex told me before we started that he would bet a zillion dollars that the teacher would say how messy his writing is…Of course, he was right, but I told him that we want solutions. We already know he doesn’t have the best penmanship. I decided to make some requests which did get addressed and others I decided were not worth the energy. I only lost it with a deep breath when a comment was made about Alex’s focus. I had to do the mama bear and say that Alex is the most auditory learner I have ever known who can play music by ear, imitate language or accents, and repeat a phrase said by an announcer from a month ago. I also said and reminded all the participants of this fun meeting that Alex told them he is unlike any 6th grader and has worries very different from the regular 6th grader. We all came back to the topic with somethings unresolved, but Alex said he felt better. I was glad to make this effort, but realized that I needed to take a break before I returned to my car. I decided to visit the office for a rest. While I waited, I watched the 30 odd students enter the office. Some were very well mannered and others were in the “entitled” category which received a very specific look and reaction by those working in the office. You would never notice this look, unless you yourself have done this while dealing with students or kids in the area. While watching all of this, I realized how difficult a day in this place would be. It is a different time combined by where we live that has created this unusual breed of middle school students. I am so impressed when I see well mannered students that I almost come out of my fog completely. I realized that everyone has their “stuff”. My stuff seems worse to me, but it is all relative. I say try to imagine walking a day in someone else’s shoes and you will appreciate your shoes all that more!

I am still entertained by Alex’s middle school stories. If he had free time away from his 30 page grammar packets and tests every day, I would have him write a blog about it. I am sure he would say it would be too embarrassing. Yesterday, I was told that a certain student who will remain nameless has not been wearing underwear for 3 days. Alex explained with a look of horror that this student was sitting his naked behind on the bench when changing for PE. Alex told me, “it wasn’t pretty, mom.” I reminded him not to sit on that bench.

Who knows what a typical cancer patient is…I know I have never wanted to be a typical anyone doing a typical anything. This cancer job proves to be too much some days for many of us. I never like to sit on the pity pot, but I have had my moments this past week. I thought I was losing my sense of humor, but I think it is coming back.  I think I will pick up Alex from piano just so I can hear his fun Spanish song and watch his faces as if he knew what a flamenco dancer would do playing a piano?!

One day at a time…more sunshine and clearer skies ahead are the forecast.


2 Responses to ““You aren’t the typical cancer patient. This is why we like you.” (nurse)”

  1. Jen Portnoff Says:

    Thinking of you. Always. Alex should definitely blog. He is funny and clever like his mom.

  2. Ruthie Says:

    Love and hugs to you Joanie! You never cease to amaze me with your strength and wit 🙂

    xoxox Ruthie

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