I like my boobs.
That hasn’t always been the case. They’re big, and they get in the way. They make sleeping on my tummy difficult. And don’t get me started on shopping for bathing suits and bras, which has NEVER been enjoyable.
On the positive, though, they did an amazing job of nourishing my baby for her first year. And I’m pretty sure I’ve had more than a few dates in my short, single past life because of them.
So, in all, I like them.
Now one of them is sick. Infected, really. It’s not my boob’s fault. It didn’t ask to be afflicted with a cancerous tumor. In fact all my boob has ever asked for is a lot of lift and little bit of affection.
The two biggest concerns I’ve had since the pronouncement of breast cancer have been chemotherapy and losing my right boob, AKA mastectomy. My chemo fears come from the debilitating condition it could leave me in. I want to work. I want to see Samantha cheer at every football game this fall. I want to have fun with my husband. I want to make things. I want to go to Quilt Market. I want, I want, I want. And my fear is that chemo won’t let me do this because I’ll be too worn down.
Turning to the mastectomy concern, and I’m not sure if I can really put the correct words to it here, but I’ll try. I’m not worried about reconstruction, the look of it, or me. Heck I’d probably be perky for the first time in my life. It’s more that I believe God has given us most of our body parts for a good reason, and that our bodies ultimately behave as a system made up of sub-systems and parts. To lose a fairly dominant part of my system scares me. Sure, I can live without a breast. Unfortunately, millions of women–and men–have. But I don’t want to learn firsthand how permanently changed my system will be because of the loss.
Of course, if I’m told that it’s either the boob or the rest of me, the rest of me wins.
The good news is that, as of right now, it looks like my boob stays right where it’s always been.
Yesterday we had our first date with the surgery oncologist. She was wonderful–caring, intelligent, patient. She has small hands, which I’ve been told is really good for a surgeon. Dr. B’s life work is breast cancer. She drew pictures and explained why a lumpectomy with radiation would work. She flat out said that once my treatment is done, that I will not die from THIS breast cancer. This is not going to kill me, as long as I follow orders.
More importantly, if all early signs and tests are correct, the need for a mastectomy is nil. Woohoo!
I’ll spend a lot of time here comparing my infertility experience with this, because they are very similar, in terms of the volume of information I need to process, as well as the ongoing care. During my time as an IPX (Infertility Patient Deluxe), I learned many things about modern medicine. I’m remembering them fast and they still apply:
- Doctors practice medicine. They are not all-seeing, all-knowing immortals with a definitive answer for what ails the body. What they are is the best provider of the most educated guess possible in a given scenario. It is unfair and naive for any patient to believe that 100 percent of what they are told is what will absolutely happen. Doctors know this and remind us, but sometimes patients forget. So, for everything I’m told now, I know that there is always the possibility, the potential, for a change in diagnosis or protocol, and that’s okay. I can live with 99 percent right now.
- Patients are the consumer. Doctors (and all of the staff accompanying them) are the service provider. The relationship requires some responsibility on the part of the provider to compassionately and competently give the best service possible. If I’m not being well-served, I have other options for care. For the consumer’s part, patience, clear communication and an open mind are required for a successful relationship. If I can’t be this way by myself at my appointments, then I bring a trusted friend or family member. This person’s main job is to stay in a clear, open mental place so that my anxiety doesn’t take over the appointment, and we get the information and care I need.
- I am the best advocate for my care. It is MY responsibility to make sure that test results are given to me, to show up on time for appointments (and to be patient if my doctor is running late because they are caring for someone else who might be in a worse spot that I am), and to communicate anything and everything relevant to my condition and care to my doctors. When I don’t assume responsibility for these actions, then I create barriers for my doctors that make it harder for them to care for me. Oh, and I never shoot the messenger.
- Accurate information is my weapon for fighting whatever is in front of me. Web searches are fine, but make sure the source is reliable. Take notes at appointments. Ask lots of questions. Be able to tell well-meaning peeps that I don’t want to hear the horror stories. But I do seek out people who have been there, done that, so I can expand the information pool. And create a support system. Fill it with the people who are willing AND able to put me first when I need that.
- Always remember that I am NOT a statistic. During our years of infertility, my husband and I blasted out EVERY. SINGLE. STATISTIC. And usually for the bad. To misquote one of my favorite movies, statistics are more like guidelines. I am an individual and my responses will be very specific, to me. So know the general, but don’t own it.
So far, my doctors, nurses and all of the support staff have been amazing. Loving, concerned, great follow-through, accessible, and I believe when we stop talking and start doing that they will be highly skilled as well. Yep. Feeling really comfy with the team we’re building.
My husband and kid are also feeling very cared for. They are with me for all of the appointments and have been treated as equal partners in this, which they are. Samantha is 15 and has requested that she be at everything possible. I love having her with us. I love not having to filter information, to know that she can ask any questions and that this gives her great security in my ongoing prognosis. It’s an amazing learning opportunity, and while she has had her moments, she’s been very strong and very open about how this is affecting her. If we need more help, we know who to call, but for now, it’s good.
So, bottom line is that I’m definitely facing radiation. Chemotherapy is still on the table as we wait for more test results and the surgery. But things are looking up, in a perky kinda way. More to come but for now, go boobs!