Buckle Up, Babe! This Could be a Bumpy Ride!

Update on my health for those interested. If not, please carry on! (TL;DR: Stage 1A, surgery TBD)

On Monday, August 6, I went to meet my breast surgeon to talk to her about my cancer and my treatment options. I was relieved that my surgeon was a woman. Not that I wouldn’t trust a man, but I felt better knowing we had the same equipment and hopefully a better understanding of and empathy for the emotional minefield that comes with the possibility of losing one’s breasts and what that might mean to me.

I went into the appointment with a treatment outcome in mind, but I wanted to be open to hear what she had to say. John accompanied me, and having been advised to bring someone who could take notes and listen to the doctor without a WHOOSHING sound rushing through their ears, I brought my longtime bestie, Sonja. She took 3 pages of notes. I also voice recorded the meeting.

I have a small (1.4 cm) tumor that they have preliminarily staged as 1A. This is very good. The doctor’s recommendation was for a lumpectomy followed by radiation, probably no chemotherapy needed. The words radiation and chemotherapy scare me, so that’s when the whooshing started. In my mind I thought “I DON’T WANT RADIATION AND CHEMOTHERAPY!!!!!” and I leapt back to my treatment plan: double mastectomy, no radiation or chemotherapy! This was about the time I stopped listening very well.

Unfortunately, or fortunately, I’m not sure which, I did hear the part where she said that mastectomies don’t rule out chemotherapy. This is where fear set in. I could feel the tension settling into my frame. In the fight or flight response, my conditioned response is actually to freeze. So, I felt my body freezing and my brain. I was thankful immediately for the voice recording and the notes that would be available for me, for when my higher functioning brain would kick back in.

So, I was partially successful. I listened, and I asked some questions, and then I still wanted the same treatment plan. I asked them to schedule for a double mastectomy with reconstruction. The doctor advised that it would take awhile to get that on the books because the operating room has to be scheduled for a long period of time, and both the breast surgeon and the plastic surgeon have to be available for it.

In the meantime, I’ll be meeting with the plastic surgeon for more information on what I can expect from reconstruction. If I decide to scale back on what I want done, it’s easy to take time away from a scheduled surgery. It’s much harder to add a few hours on to a surgery that was going to be for a lumpectomy. So, I decided to plan for the most surgery time I would need, then scale back if I want to later. I’m already second-guessing the mastectomy idea after reading up on the different treatments available. The fact that I can get reconstruction on both sides so things are symmetrical, without having to do double mastectomy is appealing. But, it will depend on some other factors… Such as the following.

When the doctor heard that my maternal grandmother’s double mastectomy for breast cancer had probably occurred pre-menopause, she decided I needed genetic testing. When she did my exam and I mentioned that I had recently (a few months earlier) had a lump that I thought was a lymph node along my collar bone just above my tumor (though I couldn’t locate it just then), she decided I needed an MRI with contrast to get a better picture of what might be going on. Perhaps this is more than a simple Stage 1A tumor. Perhaps a simple lumpectomy will not be enough. I need more answers.

I went home and called my aunts, to see what they knew about my grandmother’s cancer, when she was diagnosed, what she was diagnosed with, etc… NOT MUCH, as it turns out. Apparently they were just told that their mom needed to go get some rest for a couple of weeks. They were still at home and in school at the time. My mom was the oldest child and she can’t answer any questions anymore. She had told me long ago about the mastectomies, but she was very unclear as to whether her mom had actually had breast cancer. I had come away with the impression that maybe she hadn’t actually had cancer, that maybe it had been preventative, or a scare that they decided to handle with an emphatic response.

Let this be a lesson: If this kind of information isn’t freely given out in your family, ASK your parents about your family medical history. Write it down somewhere you can find it again. Eventually you’ll probably need it, and then you won’t struggle for days like I did to fill out the family history questionnaire for genetic testing!

After I spoke with my aunts Mary and Margaret, I gave my mom’s cousin Joan a call. My aunts had both mentioned she’d probably know more than anyone else about this. I had never spoken to her before, though apparently we’d met when I was young. We talked for over an hour and boy did I find out that cancer runs in my family!

So, now… I go to get an MRI and Genetic Testing (not exactly sure what this entails yet) this coming week on Thursday. I’m a little nervous about the outcomes of these tests but I’m glad they are looking further than the immediate problem.

On Tuesday, I went to a Breast Cancer Support Group for patients and survivors. It was really good, but a little intimidating to see what these women were going through. I told them about my triple whammy of ex-boyfriend dying, father dying, and cancer diagnosis within 1 week. Everyone’s jaws dropped. I told them that I was a little concerned because so far I hadn’t really cried about any of it for very long, and I’m a crier. I mean, I cry at commercials all the time! People say to me, “you’re too sensitive!” The group told me it will hit me when it hits me, and to just be cautious about how much I took on in the near future. To be aware that I could get overloaded easily and to have room and space in my life to fall apart for a little while if I needed to. To build the best support system around myself that I can. I had lunch with a couple of them after the appointment and they gave me a lot of good information and wisdom.

Maybe too much… I left in a great mood, but by nightfall I felt completely overwhelmed. When I get overwhelmed, I cry, I withdraw, I’m irritable, I want to be alone, and I write. In this case, I mostly got quiet and withdrew into myself. It lasted a few days.This was hard on John and on me.

John is also struggling a bit. He’s helpless to do anything but be supportive. He can’t fix it. He’s an engineer. That’s what he does. He figures out how to make things work. But he can’t fix me. This makes him also withdrawn and irritable. John also needs a support system. In our lives, I’ve been the one to hold space for and handle the emotional issues. When the kids were younger and troubled, I handled the emotional impact, he handled logistics. But I can’t handle the emotional aspect of this for him. I am full up, handling the emotional aspect for me. Buckle up babe! This could be a bumpy ride!

That’s all I have to tell you for now. If you made it this far, thank you for taking the time and having the interest. It is tremendously helpful knowing I have a small army at my back, people that care about me, that are available to me, that want to help. Thank you, thank you, thank you! I’m so grateful! People have messaged me and called me and it’s been a tremendous gift!

(p.s., the family information tree got activated [though I am not on it, must fix that] after I spoke with my mom’s cousin, and I heard from my somewhat long lost 2nd cousin, Kristin Leaf, which made me super happy!!)