Mom in Cancerland

Monday, October 22, 2007

Oct. 22 2007

I went to the Metastatic Breast Cancer Network Conference in Nyc on the 13 th of Oct. I was asked to be a speaker in a break-out group for newly diagnosed patients. It was a very emotional experience. I hope I helped some of the women there. The emotion, stress and fear on their faces was so evident. It ran right through me. I'll share some of what I talked about with them at another time.
I met some wonderful people. One of them was Patty from Florida and her husband. She wrote to me shortly after and I will post below what I posted back to her. It will explain a little more of my personal history.

Hi Patty!
It was great to hear from you. I really enjoyed meeting you and your husband. I wish it was under happier circumstances, of course.I told my husband all about you guys. I wish he had come. Maybe we could have gone out to dinner or something. I know he’d make you laugh that’s for sure. We have a slightly sick sense of humor when it comes to this cancer crap.

Did you get to the support group? Was it one for mets or a regular one? Any help? We have a great social/support group here out of Hartford Hospital. They get together informally every month. Lately, I’ve been feeling less and less connected to the group. Last month one woman had it at her house to celebrate her 5 years of being cancer free. I skipped that one. I know another woman in my town who just turned 30. She was also diagnosed at stage 4 from the beginning a year ago. She has bone and liver mets, but is now NED. She seems really to just want nothing to do with the cancer world. I keep inviting her to lectures etc and she always says “no”. I can understand that after a year of living this, she just wants to detach. Everyone has different ways of dealing.

My story is that I had a lump when I was nursing my son. I just wrote it off as a blocked milk gland or something. My OB-Gyn even admitted that they didn;t like to do mammograms on nursing woman since their breast changed all the time. He said to wait until I was done nursing for 6 months and gave me the mammogram slip. After I stopped nursing and things shrunk back to normal size the lump was much more obvious and it was my husband who mentioned that it didn’t seem right and maybe I should get the mammogram sooner. It is always one of those things I will regret. Waiting so long to get it checked out.
I was so clueless going in that day thinking they would just reassure me it was a remnant from nursing. Man, how could I have been so wrong. The wheels started turning so fast. I remember sitting in my car after I got out of there with my films in my hands to bring to the surgeon the next day. It took several minutes to get my hands to stop shaking to call my husband.

Things just went down hill after that. They were immediately suspicious about metastisis since the lump was so big. They wanted to put me though staging tests right away and start chemo first. That was the most aggressive thing they could offer, but since I was highly er+, I could also have chosen tamoxifen only. That didn’t seem like enough so I chose chemo. I went to Dana Farber for a second opinion and they said I could do either and would probably do “very well” no matter what I chose. Very helpful.
I did 8 rounds of chemo which we actually know did little to nothing for my cancer except maybe keep it stable. When chemo was over I started lupron shots to shut down the ovaries and had a lumpectomy and a mastectomy then tamoxifen. Reconstruction was not offered to me since we didn’t know if I’d also need radiation. Turns out I didn’t need radiation, but I’m not looking for anymore surgeries now so I go with my prosthesis. I had my ovaries out a year ago so no more lupron shots and now I can be on femara. I also get zometa infusions every 3 month. I get PET/CT scans every 6 month and all have so far been stable more or less.
I thought I could never be happy with anything but cancer free, but stable is OK. I’ll take it.

I always felt from the beginning that there was something I was meant to do. I just didn’t know what it was. I thought maybe I should write a book. I didn’t know, I just knew I had this strong feeling that I needed to do something. My therapist asked why being a mom and wife and fighting the disease wasn’t enough and I didn’t have an answer. That was important, but I still felt something was missing.
Finally several months ago I began volunteering some time for the MBCN and Y-me org. I’m training now to be an on-call peer counselor for y-me. MBCN asked me to be part of the break out groups. I don’t know if I’ve found exactly what I’m supposed to do yet, but I feel I’m going in the right direction.

Maybe we could go on the lecture tour together! I understand your feeling that you may someday be lecturing in front of groups. I’m sure you didn’t want cancer to be the topic.

Right now, I can’t go to Houston since I’d need help with the kids and my family will be away. I’d love to go. The lectures look great.

Let me know how you are holding up and if you have time, let me know your diagnosis, treatment etc.
It’s tough to keep up the positive attitude for sure. But, when it really comes down to it, the alternative isn’t so pretty.

Sorry this is so long!!!
Thanks for writing.


Sunday, October 14, 2007

Sunday Oct. 14th 2007 Day 1

Ok, so I guess I'm a blogger now? You'll have to really stay with me on this one. My hopes is to create some sort of documentation for my kids especially that will give them some insight into my personality, thoughts, dreams and all that. You see, I have stage 4 breast cancer. I have had it for 3 years. My disease is stable, but still considered terminal and incurable. How I live my life under this dark cloud and continue to raise my 2 beautuful children and still laugh and plan and be a wife and a useful member of society. This is my goal. This is what I am all about. Maybe I can connect with others in my unique situation or maybe it'll just be a exercise for me we'll see. Anyway, the sleep meds that I need to take everynight are kicking in. I may start revealing embarassing parts of my past so best to sign off now.