I'm trying to use some of my time to get back into the reading and writing of poetry and I found myself inspired to try a bit of Minimalist Concrete Poetry.

Here's my go at it - "Biopsy"



And for those who like a bit more substance, I've found myself drawn to some of the works of Doriane Laux and thought I'd share.

Today is Day 11, and it's the best I've felt since D1. I still don't have much energy - folding one load of whites wore me out yesterday, but I think that might have more to do with the mastectomy then the chemo. I have no arm strength.

I'll be getting Neulasta shots to boost my white blood counts one week, and Aranesp the following week to boost my red's. Both of these left me feeling pretty achy and tired. This first week I also needed an Infed Infusion to help with anemia. This took around 4 hours to administer so I'm glad it doesn't happen often.

BTW - Chemo is also more time consuming than I expected. I thought I'd be at the center every Wednesday (D1/D8) - turns out I'm there Wednesday, Thursday, Friday, Saturday and Wednesday.

All in all the process isn't so terrible, certainly not pleasant. The people at the Cancer Center are wonderful, and in suprisingly good spirits, which really helps the patients deal with the emotions of what it is they are dealing with.

The next big event is Monday .....buzzzzzzzzzzzzzzzz

If you can - do it.

One of the best things about being out on disability - is flexibility.
Everytime an appointment is added or adjusted - I deal with it - no problem. If I was working, and had deadlines to meet, and had to make my time up everytime I was out - I'd be so stressed out it would have to be unhealthy.

Just a Sample:

Friday: Got a phone call - "Please go to [out of town hospital] to get CD of MRI records for Radiation Oncologist on Tuesday, and to [downtown medical center] to get Mammogram's from first appointment in October".

Monday: Go to [Surgical Hospital] to preregister; go to [downtown medical center] to get Mammogram's from first visit. (BTW - they weren't there - [out of town hospital] hadn't returned them yet from appointment in January.)

Tuesday: See Radiation Oncologist - who didn't look at MRI data

Wednesday: Take Son to see Orthopaedic (he may have broken/bone bruised his elbow just over a week ago and had a call back visit - real life does go on); also got a call this morning to go into work to get personal stuff - they're moving my workspace this weekend.

Thursday: Go to [Surgical Hospital]. Initially just port placement - be there at 10:30; As of wednesday afternoon it is lab work, ekg & port placement - be there at 9:00.

Friday: R&R!!!!!

Yes. We finally came to a decision concerning radiation. Actually, I came to this decision a long time ago - it was just getting the rest of the team on board that seemed to take so long. I am going to get radiation - and I'm thrilled.

I want to know that at the end of the day, I've done everything I could to fight this. I didn't have confidence in the justification for not considering radiation, so I thought it needed to be discussed;which is what the National recommendations call for. So if you are a 1-3 node positive patient please ask that the specifics of your case be discussed - it truly is a gray area - and this decision is crucial. Radiation is something you don't want if you don't need, but if you need it, by all means you want it. In my case, my age, the fact that I had macrometastasis in each of the positive lymph nodes (despite my tumor being small), and that only 7 nodes were dissected were the contributing factors.

I feel so much better now.

Here's the thing:

If you have 4 positive nodes - seems you get radiation therapy - even after a mastectomy. No positive nodes - no radiation therapy. Pretty Simple.

But, what if you have 1 to 3 positive nodes? What's a girl to do?
Well, seems the experts don't know what to do with you.

"There is insufficient evidence to make recommendations or suggestions for the routine use of PMRT in patients with T1/2 tumors with one to three positive nodes."

Is it me, or is that a crock?

So here I am with possibly 2 or 3 positive nodes (don't know which since the pathologist did such a crappy job writing the path report) and I don't know whether to get radiation therapy or not. I don't want it if I don't need it. It damages your body, and cancer patients go through enough damage as it is with the surgeries and chemo; but if I do need it - if I'm one of the people it will help - then I want it. And I want it now, before I get breast reconstruction - it's the main reason why we delayed reconstruction in the first place and I certainly don't want a recurrance in a few years, after the reconstruction, only to have my new breasts destroyed. That is unacceptable.