(This is one of the more pay it forward kind of posts– far more interesting to someone approaching this surgery themselves than to most. Feel free to skim if you’d rather not hear all about compression bras!)
The kids were back at school today, so I set off to get myself ready for this week’s surgery. Step one: coffee with a friend who’s been there. She brought along some encouragement, friendly advice, and these maxi skirts. For the record, I think some people look adorable in a maxi skirt, but I’ve never liked one on myself. I was thrilled that she would loan these to me since I didn’t see myself wearing them past the four week mark when I get to lose the almost to the knees bike-short style compression gear. When I got home, I set out to trying them, seeing which tops might go with them and cover the compression bras that I already have (though I’ll come home from the hospital with more)– the “nice” one I got at Nordstrom but couldn’t really wear after the first surgery, and the awful one from the hospital. The one from Nordstrom is a bit more streamlined, but it’s cut a lot higher and didn’t have quite enough compression the last time around. The icky hospital one is lower cut but has a lot of velcro that bunches and flips up in really awkward ways. To deal with that the last time around, I took to wearing a sports bra over it– just to keep all the flaps down. My secret weapon? An XL undershirt from the little girls’ section. Tank tops from the women’s section are too low cut and show the bra, but these from the little girls section are great for layering to cover the top of the bra. The last step will have to be all those scarves I wore to cover my bald head last fall, wrapping those around my neck will help hide some of the bulkiness of the bra. I was lucky to be able to wear bulky sweaters after my last surgery, but I’m not willing to wait for colder weather for this surgery, so when it comes to my wardrobe, I think it will just be a make it work moment.
I’m a pretty independent gal. Learning to ask for help wasn’t easy for me. A few friends told me, probably more than once, that they all wanted to help. They needed to help. Cancer brings a sense of helplessness to everyone involved, and I really do think that letting my friends help me helped them, too. (At least I sure hope so!)
But I’m so glad to be moving out of that phase. Sure, I’ll still need back up child care for my last surgery and maybe an appointment here or there, but for the most part, I don’t need a lot of help anymore. I’m entering the pay it forward phase. I’m thrilled to be able to type this while watching my kiddos play legos with some friends whose mom is at an appointment– friends whose mom was a go-to anytime I needed to leave early in the morning or miss an afternoon bus stop. Having tried to arrange early morning schedules for doctors appointments, I know that not having to worry about my kiddos was such a big deal, and right now I’m seeing the flip side, having a few extra playmates isn’t hard at all.
This blog started out as a check-in, maybe once a day, maybe once a week, to let friends and family know all the new treatment details and how I was feeling without me having to retell the same story over and over. I know they appreciated the blog, but really it was for me, a way to manage the information people received and lessen my email load. But now I’m ok, there aren’t new treatments, side effects, or decisions every week. So this blog has moved to more of a pay it forward phase, too. I’m so delighted when I hear from friends who have been reading this from the beginning, telling me that they are passing it along to a newly diagnosed friend. It is such a good feeling to see a comment from someone I don’t know or to have the privilege of talking to a newly diagnosed stranger to give her a some insight, a doctor recommendation, or just a little encouragement.
I really do have the very best friends and family. I am so thankful for things that I could never even begin to name here. I’ve gotten a lot better about asking for help when I need it, and while I try not to take advantage of my friends, I also try not to worry about asking. But I am so glad that I’m at a point where I can see when others might need help and offer it. It feels good to be able to pay it forward.
I’ve never been the cross the days off the calendar type of gal, but I’m getting dangerously close to that point right now. Two official countdowns going on in my mind– six days until school starts and ten days until my surgery. This last week before school starts is usually long and short at the same time– long because it is the last week and we’re all ready for them to get back to school, yet short as we try to squeeze in every last bit of fun. One afternoon already this week, I spent some time at the hospital, getting ready for that second countdown. Once again, I answered a battery of questions (Do I have heart problems? Do I have kidney problems? Has anyone ever noticed that I stop breathing when I sleep?) all with a “no,” and was thrilled to be able to say that I am taking no medication at all. The nurse remarked that I was easy, so healthy. Well, healthy except for that pesky cancer. Anyway, after a quick blood draw, I was on my way home, ready for next week’s surgery. I go back and forth, questioning the wisdom of scheduling surgery for the first week of school, but really, I am so eager to have this finished that it would have been a struggle to wait any longer.
This procedure will be outpatient, and since I’m the first procedure of the morning, I should be able to beat the kids home and maybe even get a nap, too. The recovery isn’t supposed to be too bad, all of the muscle cutting/rearranging/stretching has already happened, and that’s the painful part. This is just a swap out– trading the tissue expanders (which have done their job but I hate) out for my “real fake boobs,” the implants that are my final step in the road to normalcy. I’m also having a little bit of liposuction, oh yes, ladies, you can be jealous, for fat grafting– he’ll use that extra fat to strengthen weak skin and give me a more natural appearance overall. I’m sure I’ll have some lifting and exercise restrictions (and I’ll be in all that lovely compression gear) for at least a month or so, but my doctor said I can expect to be pretty much recovered in a week. Which is good, because as soon as school’s in session, my calendar really starts to fill up, and I’m looking forward to a fun, and healthy, school year!
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.