I've had a stressful week. Warning! If you only want to read positive stuff from me, re-read my last email to you! And if you want to send me email telling me to stay positive and upbeat, please don't. It just makes me feel worse. I am as positive as I can be and I don't want to believe that having negative feelings from time to time is going to effect my progress or outcome either way. I do want the freedom to express all of my feelings and that may sometimes mean the negative ones.
So this is why my week was stressful:
1. I was having second thoughts about my oncologist. Several things occurred:
- the MRI assisted biopsy changed from Friday to Monday due to the oncologist's office not being on the ball
- she told me why she thought I'd need a mastectomy over a lumpectomy in her view of things (which painted a horrible picture in my mind when the surgeon painted a positive picture of great response to chemo and then a lumpectomy)
- she overlooked my need to get a port put in so my surgeon had to scramble to find a time at Dominican last minute and now I've got an appointment at 3pm on Friday (which means I'm fasting all day -the anticipation of which is causing me more stress and was totally unnecessary had I been informed of the need for this port even a couple of weeks ago)
2. Because of the last minute need to put in a port at an inconvenient time when Geoff wouldn't be able to take me home from the hospital, I had to get over my uneasiness of asking Doris to take me home. She's the one I wanted to do that, but asking her to do one more thing for me was hard. (She's also going to my first chemo with me). Asking for support isn't easy for me and I'm going to be on a learning curve with it. But once I knew Doris would be willing to take me home, it settled my mind and made me feel better. (she's a friend I met through Chabad who is also a therapist and we share an office and she's gone through these things before just a couple years ago and so has been a tremendous gift to me right now)
3. Because I was nervous about having the 2nd biopsy, I didn't ask what it entailed and just had it in my mind it would be easier than the first since it was a smaller mass they were working on. Being in denial about things seems to be my way of managing my anxiety. Unfortunately, Geoff decided to go with me and it turned into a 3+ hour experience where he had to leave me at the breast center to get a mamogram after the biopsy (with teeth chattering from the stress) in order to pick up the kids from school in the rain. And please, we KNOW everyone and any one of you could have and would have loved to pick up the kids for us and I even had one friend get really angry with me for not calling her (which just added to my stress) but it's all a learning curve for us. We were just unprepared and didn't know it was going to be such a long time at the MRI center and next time we will be prepared with a list of all of your phone numbers or arrange something ahead of time. Since this is all new for us, it's hard for us to fathom what we need right now and prepare for it ahead of time. And we are so used to being there for our kids ourselves.
4. We had a consult with another ocologist which ended up being even more stressful because he gave us all the numbers: going thru chemo gives me a 25 - 35% chance of shrinkage vs a 5 - 10% chance of going the other way and growing instead. Plus he recommended a whole different treatment program and didn't understand why everyone else said I should need shrinkage in order to get a mastectomy and he'd recommend I get one first before chemo. My present oncologist agrees with the regimen that Stanford tumor board recommended which is that I get chemo first in order to have a better surgery (mastectomy). The bizarre part was that this other oncologist who painted such a different picture for us was trained at Stanford! So I walked away with the lesson that my oncologist is fine and what I care most about is the chemo room she has at her office which is really bright and comfortable. And truthfully, numbers and percentages mean nothing. If I lived by them, I'd be happy that breast cancer is one in eight which would give me great odds of not getting it!
Anyway, the following is good news to me though it might seem to you that it's bad: the biopsy of the right breast came back positive to those cells we don't want growing in our bodies. So I've got a mirror image of that bad growth in my body! But the left side is further along and the right side probably got eliminated with the biopsy. It only means that I may decide to eliminate the entire breast if I have to eliminate the left one. Because why be lopsided and deal with that? And it also means when it comes radiation time, I will have to get radiated on both sides. The reason it's good news is that it would be really hard for me to opt to get a double mastectomy if I knew that the right breast was healthy. So if it comes down to a mastectomy of the left one, it'll make the decision about the other one easier to make.
And don't talk to me about reconstruction! Forget it. Unnecessary surgery in my mind.
We went to chemo 101 at the Katz center today and I was able to choose a wig. They give out free ones. But in the meantime, I'm going to try a shampoo and lotion that was created in Germany for cancer patients. My dentist told me about it. Maybe I'll get to keep my hair. If not, though, I've got the wig now.
Another positive: there was a woman at the chemo 101 class that had gone through chemo treatment after her partial mastectomy. And she was struggling. It made me realize that I'm lucky to have chemo first because if it shrinks the tumor, I will have something motivating me to continue on through the difficult parts of it. If I had the tumor out first, I wouldn't have that motivation. So in that way, I'm very lucky!
My parents are coming to visit next week for a few days. It'll be the first time I see them since the diagnosis. I'm really looking forward to it and so are my kids.
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