When I last wrote, I still had a lovely open wound. It’s much better now, all closed up and covered with a lovely scar. Unfortunately, during the hurting and healing process, I developed adhesive capsulitis of the shoulder (aka “frozen shoulder”). This was the result of barely moving my arm for months — my chest hurt so badly from the incision/wound issue that I kept my arm bent in front of my chest , as if guarding it from further injury, plus I couldn’t stretch my arm out very far for fear of ripping the wound open even more. Frozen shoulder hurts, a LOT, and it’s very inconvenient. I could not move my arm up to shoulder level, and couldn’t move it to the side more than an inch or so. Once I went back to work from the wound issue, I had to get up at 4:30 every morning so my husband could help me shower since I couldn’t lift my arm high enough to wash my hair) and tend to my wound. I haven’t slept through the night for a long time as it is, but the shoulder/arm pain (did I mention it HURTS?!!!?) wakes me up every 2-3 hours or so for drugs and ice. I ended up seeing an orthopedic surgeon and went under in April (5th time under anesthesia since last January) for shoulder manipulation. I woke up in just about as much pain from this as I did from my mastectomy. I gauge the immediate post-op pain level by my post-op blood pressure. After the mastecomy, it was 190; with the shoulder manipulation, it was 150. I thank the universe for inventing pain meds. I still do not have full mobility and I still have a lot of pain, but thanks to the shoulder manipulation procedure, a lot of physical therapy, and regular massage, I’ve made a lot of improvement and can now perform normal tasks such as washing my own hair and cooking dinner. Yesterday I even went to yoga, my first time in over 8 months. Prior to breast cancer, yoga was a huge part of my life. I went to class 3-4 times a week and I had a very strong practice. Having to give that up because of my physical limitations has been very difficult for me. I was terrified of going back yesterday. I was afraid that I would be in over my head and would want (or need) to leave half way through class, or that I would injure my shoulder even worse (I did have clearance from my physical therapist to go, by the way), or that others would be staring at my breastless chest (how silly to think I’d be judged by my felow yoginis!). Most of all, I was afraid that I would feel sad and discouraged about how much I’ve lost in the way of physical abilities. But, with the support of my husband (my yoga partner), I went with the attitude that I would do what I could and if I had to take child’s pose for half the class, that’s what I would do. And it felt good to go back! I couldn’t hold my warriors for as long as I used to, and I had to do chatturangas on my knees, I couldn’t stretch my right arm all the way up or to the side, and certainly no backbends or handstands, but I made it through class. For sure I am sad that I can’t do all the things I used to do, but I’m not obsessed with it and I’m not discouraged, which is how I was afraid I would feel. Rather, I feel proud that I made it back to class sooner than I thought I would and I made it through. I feel good knowing I can do it, and even though it feels like I’m starting almost from scratch, I can do it.
One of the things I have been struggling with the most in these last couple months is fatigue. I can barely stay awake past 7:00 p.m. It’s very frustrating and it’s actually a little painful to feel so tired. Occasionally when I’m trying to fake it (as in pretending I’m not tired because I feel guilty for not being able to participate or be fully engaged with my family at night), I just disappear to the bathroom for a few minutes to have a good cry. It doesn’t give me any energy, but it feels good. I keep hoping this will eventually get better, and I’m thinking that getting back to doing something physical (i.e., yoga) will help. I’m so lucky to have a husband who picks up all the slack for me. At night after work, he will recognize when I’m tired and tell me to go to bed, even if it is only 7:30. He makes sure the girls have their baths and snacks and that they get to bed on time, that the dog goes out before bed and the house gets all locked up. On the weekends, he will tell me to take a nap in the afternoon while he takes care of the laundry and whatever else needs taking care of. He really is an amazing man. Tomorrow is our 12-year anniversary, and I have to say I hit the lotto with this man.
One other thing that is concerning me is the results of my recent bloodwork. I studied my lab results and compared the changes over the last year, and my tumor markers have gone up each time. I saw my oncologist on Wednesday and he says that they are still well within the normal limits, so he isn’t concerned. The question I didn’t think to ask, but now can’t stop wondering, is…if I am cancer-free, shouldn’t that number be a big, fat ZERO? If the range is 0-38, and mine is a 19, does that mean I’m half-way to having cancer again? Also, my white blood cell count is low, lower than the low end of normal. Again, he didn’t seem too concerned, just said maybe I was sick the day I had my blood drawn and just didn’t know it. I can’t help but worry a bit, and I do wonder if that’s why I’ve felt so fatigued. Perhaps I’m making a broad generalization here, but as anyone who’s had cancer knows, these are the kinds of things that can make a girl lose sleep.
I see my plastic surgeon this week and will of course ask him if trying reconstruction again is going to be an option. I wouldn’t do it anytime soon, but I do need to know if it’s something I can consider. I thought I’d be okay with a breastless chest, and I am getting a little less self-conscious about it, but I still can’t look in the mirror, and I miss the femininity of those little lumps underneath a shirt or inside a bikini top.
So, I do have some fear – fear that I am not well, fear that I’ll be stuck with this icky looking chest forever, fear that I am never going to feel good again. But I also have hope — hope that I’m going to feel better and stronger as time goes on. Mostly, I have gratitude – for my health (despite feeling crappy a lot of the time), and for my amazing husband, family, and friends.