I vaguely remember seeing this when I found it the first time, but was so amused when I came across it last week. I have no idea where she got her five month timeline, but it turns out she was pretty close. Five and a half months from diagnosis through chemo to surgery and declaration of no more cancer. I just love the innocence of how kids think, and will treasure every one of the things they’ve written and drawn for me.
I was going through all the mail I’d saved for Wednesday’s post, and I came across this prayer request card I’d snagged after Emma Clare filled it out at church. On Christmas Eve, we were sitting next to Sally and her family, and Emma Clare included her friend’s name on this card. Apparently, she was hoping a pastor at church would pray for me. Also for her to be able to have a playdate with her friend. Priorities. At least I was the first request.
This is my box of mail. All the sweet notes and cards that people sent before, during and after my treatment. I don’t know our mail carrier, but I have to wonder what he thought was going on at our house. Surely he noticed– almost every day there was something personal for me in the mail. There were so many notes of encouragement and promises of prayer. Some short and sweet, some a little longer. I wanted to save every one, to remember how many people care about me! I mentioned before the weekly prayer cards from Aunt Alice’s church, I still get one of those every week! Then there was the weekly card from Dr. Ruth– not the Dr. Ruth– but a doctor whose name is Ruth, a friend of Clay’s parents. She faithfully prayed for me and I found a card with a quick note of encouragement at the beginning of every week. Then there were the cards from my college friend, Sara. Every chemo week, she’d send me a card. In college, we used to spend far too much time in Hallmark looking at cards. She managed to find some great cards to send me, and I know that was hard, I tried to send a card to a friend at one point and found the selection has really gone downhill since my college days. Sure, she found great cards, but the best thing about them? They were totally her, she managed to squeeze something onto every white space available on the card, telling me stories about what was going on in her life. She almost never even mentioned cancer, she was just her usual chatty self. Those were fun cards, I looked forward to them after every treatment! I don’t get nearly as much mail these days, which I guess is good. But I do miss all those friendly notes in the mail!
This post is part of a series of what I’ll miss from my time as a cancer patient. I know cancer is a serious thing, not everyone tolerates treatment well, and not everyone recovers. I don’t mean to offend by making light of a serious subject. These posts are just a glimpse of my efforts to make the best of my situation—to find the silver linings wherever I can.
I’ve been meaning to write this post for a while, and somehow I have a hard time finding the words. Perhaps it’s because I’m just beginning my journey as an advocate, learning what it means. So I did what anyone in my position would do, I googled it. Defining an advocate as one who supports or promotes the interests of another seems to make the most sense. So specifically, I want to support the interests of breast cancer patients– I want them to understand their disease, their treatment options, and the ways their life will be different during and after their treatment. But I also want to support the interest of breast cancer researchers. Good research, after all, will ultimately be of benefit to the patients.
The best way that I can see to support patients is on an individual basis. This blog has allowed me to reach out to newly diagnosed women, and I am glad to meet and chat with them one on one. I try to reach out to friends of friends, and I’m hoping that in the future I can be a part of an organization that encourages this kind of mentoring on a more formal basis. Supporting research is another animal entirely. I am so grateful that I was able to become part of the Georgetown Lombardi Breast Cancer Patient Advocacy Committee. It gives me a way to support research in a way that is completely natural to me. Though I’ve only been to a few meetings, it seems that one of the bigger roles we play is to interact with researchers, helping them put the finishing touches on grant reviews. Some funding mechanisms now include “consumers” (breast cancer survivors) on their review panels, and we help the researchers present their research in a way that will be easy to understand and attractive to those reviewers. Having written a grant myself and participated in the grant writing process in my labs in graduate school, I realize that by the time we see the grants, the scientists are not likely to change their science. Our role is not to question their science, but to help them put their research into a bigger picture, to remember that their ultimate goal is not a great score by the review panel, but to make a difference for the breast cancer patient. Sometimes, as a scientist, it can be hard to step away from the familiar, technical language. I look forward to being able to help the scientists whose grants we review boil their science down, making it relevant and exciting to a breast cancer survivor who doesn’t eat, sleep, and breathe science. I’m also looking forward to being able to serve as a consumer on a review panel, something I’ll hopefully have the opportunity to do within the next year or so.
I feel so fortunate to be part of this group at Georgetown, as I imagine it is one of the first of its kind. It was started by a researcher there who had interacted with some advocates at a conference and felt they could lend an important perspective to the scientific process. Most breast cancer advocates, however, do not review grants. They advocate for legislation. In conjunction with large national organizations, they lobby their congresspeople for the funding necessary to give all these grants. The National Breast Cancer Coalition has a very strong advocacy program, educating many of its advocates through a week long scientific crash course before sending them out on annual Lobby Days to speak to congresspeople or their staffers. I am looking forward to meeting their Executive Director for Advocacy Training this fall when she speaks to our group at Georgetown. Having figured out a little about what being an advocate looks like, I’m looking forward to figuring out what being an advocate looks like for me.
Sally took the picture on the left two years ago when our families vacationed together at the beach. The picture on the right was taken this summer in Old Town. I really do love that dress! Emma Clare saw the older one recently and remarked that it hardly looked like me. “I sure had a lot of hair there, didn’t I?” Her reply, “Well, yeah. And you look a lot younger.” Thanks kid. Anyway, I thought I’d use the two side by side to demonstrate how my taste in earrings has changed. I stopped wearing the big hoop earrings as soon as I shaved my head– with a scarf tied around my head, I felt like a pirate. No thank you. I still held onto my other favorite big earrings, though, I think the fact that the scarf I usually wore had a long tail made it still feel like I had long hair. Now, though, my hair is decidedly short. Every once in a while I try the big earrings again, and I just don’t feel like they’re right. So now, I tend to favor chunky studs– Kate Spade makes several different pair that I love and are actually pretty reasonable. Plus, now that they’re so popular, there are a lot of knock offs around! I think I’ve got two or three pair of Kate Spade studs and a couple from covet, a favorite local boutique. I want them to be big enough to be seen, but not big enough to fall past my earlobes. I’ve got enough basics to keep me happy, but now I’m on the lookout for something new.
I made some new friends last night. My first survivor event. They gave me a pin. I had to wear it. It said survivor. You know how I feel about that word. Apparently the ice breaker at this kind of event is to ask how many years you’ve been a survivor. So not only am I a bit uncomfortable about that moniker to begin with, but I have no idea how to answer that. In my mind, I guess I mark survivor status from the date of my surgery, which puts me at almost five months. One woman thought I should mark it from date of diagnosis, because I’ve been surviving since I heard the surgeon tell me that I had cancer. So that would be ten months. It must be easier when it’s something like five years. At any rate, I suppose it’s official, I’ve got the pin and everything. I’m a survivor now, and I guess I’m going to have to get used to saying it.
That’s sort of the point I am at now. And I guess I’m thankful for that, it’s better than just after I was diagnosed with cancer, when I would fall asleep fine from sheer exhaustion, but then wake around 1:30 am, unable to fall back asleep. (I became rather familiar with the television schedule, I watched Closer reruns at 3am, and Vegas at 4. I don’t ever remember that even being on in primetime…) Now, I struggle to fall asleep, and feel like I’m waking up all the time. Despite the four pillows that I’m now up to, I just can’t get comfortable. It’s really all because of the tissue expanders, and once those are out, I anticipate that I’ll sleep like a baby. One of my babies, who slept through the night almost immediately, not one of those colicky, up-every-hour kind of babies. If they’re the measure, then I guess I sleep like a baby now.
Having just been to the doctor’s office this week, surgery’s back on my mind. Immediately after the mastectomy, of course some pain and weakness are totally expected. Since I’d spent time with the physical therapist before the surgery, I knew that my range of motion would be limited at first. I could raise my arms to shoulder level as soon as possible, and by the end of six weeks I should be able to raise my arms straight up over my head. She cautioned me that I should take things slowly, but that I needed to work to get back a full range of motion. Being overprotective would actually work against me, she said she’d worked with women who couldn’t raise their arms higher than their shoulders years after their mastectomy. Determined not to have that problem, I worked on her exercises to have a full range of motion as soon as it was allowed. At this point, I think my shoulders are as flexible as they ever were. The pectoral muscles are still an issue. They’re always a little tight, when the physician’s assistant described it as my body’s “white noise,” I think she got it just right. There’s always a tightness, but I don’t always notice it. Then there are times when those muscles are definitely spasm-ing (is that a word?) and while it’s not painful, it’s really uncomfortable. Those muscle issues should lessen after my final surgery, though they could continue long after I’m “back to normal.” In chatting with my doctor, I asked if exercise would lessen or exacerbate the muscle tightness. He assured me that stretching is good, but strength building of those muscles might cause more harm than good. So no push ups for me! Can’t say I’m too sad about that! (Though I do miss the plank and push up heavy neighborhood boot camp…) Still, I can work on my arm muscles, and he encouraged me to strengthen my back. Apparently, the way the muscles are pulled causes the shoulders to want to slump forward, so strengthening my back will help naturally pull my shoulders back into place. Right now, I think I’m focusing on getting my groove back on the trails, but after I get the post-surgery green light, I’ll be adding some weights into my running routine to keep my arms and back strong.
I was back at the plastic surgeon’s office today, for my second pre-op appointment. My surgery isn’t scheduled until after school starts, but he likes to do the pre-op appointments early to be sure I’ve had time to ask any questions and get everything I need. I came away with two more scripts– heavy duty antibiotics to prevent infection after the surgery and more lovely percocet (which I probably won’t need). He explained to me that this surgery is much less invasive and all the trauma has already been done, so it should be a pretty easy recovery. The mastectomy involved cutting, moving, and stretching of muscle, and that hurts. But this surgery will literally be a swap out, so no new cutting or stretching. I also got a pamphlet for medical grade compression gear, we’re talking gear so tight it requires multiple sets of hooks and eyes just so you can zip it up. So if your spanx just aren’t cutting it and you want something even stronger, I can totally hook you up.
Run Lipstick Chemo 