Does this belong here?

[chicagoetc]

I am writing this in a text editor in order to copy it more coherently as a post in this site. I tried writing something about it earlier but think I must have not written it right.

I am fearful, frustrated, sad... and not because there has been a cancer recurrence (that I know of). My assumption was that once surgery/chemo/radiation were over everything would be relatively easy. Herceptin in fact has been relatively easy, as has reconstructive surgery.

What is not going right is something that started fairly suddenly mid June of this year. I had worked basically fulltime through everything and that had worked. I was able to provide supervision, review clinical documents, help with annual mental health / psychosocial assessments..even a fairly complex training/seminar. Some days were harder than others but not to the extent I could not work.

My brain went goofy starting in June. I can't seem to find anyone in this forum with a similar experience (leaving me wondering if I do/don't belong here).

Sheila suggested I write symptoms. They are:

- Nausea: Extreme periods of nausea (not from eating anything). Dizziness/nausea when writing, typing, reading for 20 minutes or more (such that I have to stop for 30 minutes in order to do anything else). Dizziness/balance problems when going down stairs. Similar dizziness/nausea when looking at someone talking when I was sitting at angle to the wall behind them. Inability to look at a person and then a piece of paper or computer screen and then back again without feeling sick.

- Multi-tasking problems: Had to stop listening to the radio or doing ANYTHING but drive in order not to hit the vehicle in front of me (many, many "near misses"). Had to take the same route to work everyday and try not to pass anyone (as I was starting to have "near misses" where my car almost crashed into the car in front)

- Memory/Cognitive problems: When doing minor multiple-step tasks as I could not remember why I wrote what I did or which step I was on when going from one part of the task to another (taking two hours to do somethinig that would have taken me ten minutes or less, AND still not solving the problem even after two hours). Constant forgetting why I go from one room to another. Frequently forgetting entire conversations with friends and others. More difficulty than usual finding where the car is parked, where I put a piece of paper I thought was in a pocket.

- Clumsiness: Dropping items/liquids/other on the floor on a regular basis. Trying to cook something on the stove, spilling the ingredients on the hotplate, getting the ingredients in but then spilling them out of the pan onto the next hotplate, moving on to a third before I got it right. Frequently almost tripping because I forget/did not focus on where I was walking.

- Speech: Forgetting words or phrases (trying several times only to find a different way to say it). Not being able to talk coherently in spontaneous conversations. Becoming scared of forgetting the name of the building I worked in a group introduction where everyone said their name and where they worked.

- Attention: Not following plots on short television shows. Same for conversations. Thinking I knew what my doctor had prescribed only to look at the instructions days later to realize I had it wrong.

- Visual problems: Watching something in a street only to have the entire scene start shifting to the left. Putting my foot on the brake in the car only to be convinced that the car was still going forward (into the next car)...when it wasn't. Sudden inability to see through my glasses with a need to replace them. Having that help but not resolve the problem.

[Ok now I'm feeling sick from writing this.] ... Break time. Will edit later.

Noone can tell me what happened. My oncologist sent me to an MRI and a neurologist (the MRI was fine). Peri-menopausal symptoms were ruled out as was medications (prescription or over the counter)...at least regarding anything that had changed pre and post treatment. The neurologist sent me for neuropsych testing. Anxiety/stress/depression were ruled out. I performed ok in some places but scored poorly on others, attention being a primary problem. Other things the test said I do not remember. The neurologist sent me to a speech therapist who works not just with speech but with cognitive problems as well. We just started.

Other medical interventions: Two anti-motion sickness meds (constant Meclezine and Transderm Scop and even that is not enough...will probably be given Zofran later). Recommendations to try either stimulants or memory related meds. Right now I'm on a trial of Namenda. There are four other options to try if this does not help, I think.

Things got worse at work. With encouragement or permission from my supervisor, I dropped to part-time. Recently I was demoted. Today I set up my new office and became petrified that I would even know how to do the job I had done for many years prior. My husband and I actually talked today for the first time about the possibility that I may not be able to work at all. I'm not stopping yet.

I want to cry. I am frustrated/scared/sad. I think this is related to chemo (Taxol maybe?) but I cannot find documention that would support this. Everything seems to be getting worse (though sometimes it seems better in places). I am worried it will keep getting worse.

If you can tell me that this does not occur as a part of treatment for BC, then at least I will know. If it is related in any way, I would be glad to not be alone in this. And, if so, maybe some of you have ideas of what to do. If not, then I would assume this is a problem unrelated to cancer. At least I would know if this is/is not appropriate for this site.

Melanie

PS: I promise to never write a post/response this long ever again. [Unless I forget of course...] I edited it several times.

PPS: Maybe I am complaining too much...most of you are posting about serious physical problems.