Lesson learned.

September 18, 2013 ~ Jamie ~ 2 Comments

After completing all my treatment and the pathology from my surgery came back “all clear,” a friend told me that I should ask about seeing Maureen, a nurse in our practice, for my survivorship appointment. My friend loved the binder she gave her with all her cancer details. Diagnostic reports, treatment drugs and dosages, pathology reports, all in one neat, tidy place. I feel like this is such a valuable resource as so many women are living so much longer after their breast cancer diagnosis. At some point, I’m sure I’ll stop calling the oncologist for every little thing, afraid that it has to do with the cancer (not that I’ve made any of these calls, but most of my friends have at least once). And at that point, I’ll need that binder o’ details for my primary doc. Anyway, everything wrapped up for me in mid March. I asked my doctor about the survivorship appointment, and after a couple of weeks, she apologized for making me wait, that there was some transition in the survivorship program or something like that. She put me in touch with the scheduling office and we got something scheduled before school let out. To make a long story short, the appointment has been cancelled and rescheduled several times since then, and I finally had it set up for this week. (And I should also say that this is the only time I’ve had anything not-glowing to say about my oncology practice. They’re great.)

Last week, I got a call from the scheduling office, and knew what she was going to say. They needed to reschedule my survivorship appointment.

Me (in a sincerely nice tone): Hi, Brittany. (yes, she is a grown up named Brittany) I’m really trying to be kind. But I’ve been trying to schedule this appointment since April. And it keeps getting rescheduled. And it’s usually about four or five business days before the appointment. I understand that I’m not sick, and I don’t want to take away Maureen’s time from someone who is sick and needs to be seen. But it really seems like maybe her schedule isn’t full and so it’s just cleared and she doesn’t come in. And every time I have to reschedule, it’s usually another six weeks before she has another opening. Can you help me understand what’s going on here? My friend said this is a great appointment, and I’d really just like to get it taken care of. Can you help me with this, Brittany?

Brittany: Maureen is actually out of the country. We expected her back but she’s adopting two children and there are problems with the paperwork so she can’t get back into the country right now.

Me: ummm….

My appointment is now scheduled for October. I’m going to go back to eating my humble pie, thank you very much.

That First Shower

September 16, 2013 ~ Jamie ~ Leave a comment

Not my shower. A girl an dream, though... (source) — Not my shower. A girl can dream, though… (source)

After I’ve been sick, I always know I’m better when I feel like taking a shower. And while I’m feeling marginally better when I hop into the shower, I always feel much better when I get out. There is something so wonderful about that first shower.

After surgery, it’s much the same. I’m not saying I’ve never skipped a day (or two, even!), but few things make me want a shower so desperately as someone telling me I can’t have one. Needless to say, last Sunday, I was counting down the minutes until I got to the 48 hours post-surgery mark so that I could get into the shower. But the first shower after surgery isn’t quite as wonderful as the one after a sinus infection.

First of all, with my crazy independent streak, even after my mastectomy, I did the whole shower by myself, drains and all. But I had to have Clay on call, standing by should I need help or have any problems. It was slow going, but I managed. The really tough part of the first shower is that it’s also the first look. It’s the first time that you get to see the scars, the bruises… After my mastectomy, all that was kind of tough. I didn’t really know what to expect, but I have to say that I found the drains more upsetting that the scars that time around. This time, he used the same incision site, so no new scars, but where I had no bruising at all the last time, this time I looked pretty beat up. We’re talking yellow, green, purple. Clay said he could even see finger prints. Thankfully, that’s all fading pretty nicely in just a week, and my plastic surgeon suggested that I take Arnica (a natural product with virtually no side effects) to help the bruising heal even more quickly. I expected to see some pretty significant bruising on my thighs from the liposuction there, but there are only two teeny little spots of bruising there to go along with all the marker circles he drew. The marker that he uses pre-surgery is pretty tough stuff and he didn’t scrub it off my legs, so I’m still waiting for that to fade (even alcohol won’t scrub it off).

This go-round, I was a lot better in the shower. I was still a little taken aback, though. I struggled with how to explain this surgery to the kids– they knew that the first surgery took out all of the cancer. I just explained that it was the last step to make sure I was all “back to normal.” Whatever that is. Finishing up after that first shower, getting assistance back into my compression garb (my pecs were still too sore to pull the hooks closed), I struggled with whether I looked normal. I’d kind of forgotten what normal looked like. And of course, I couldn’t expect to look completely normal– crazy bruising and swelling aren’t normal. This was the last step in the process, though, and if I wasn’t happy, I’d have a long time to be not happy about it. I worried if I’d made the right decision. And of course, I had. I just needed a little time to work it out. Somehow I just wasn’t expecting it when I got ready to head into that first shower.

I’m with stupid.

September 13, 2013 ~ Jamie ~ Leave a comment

I feel like this is the shirt I need lately. (Note to creative-type readers, this is not the tee that I want, I don’t really see myself wearing it, so no need to get all crafty and gift me one!)

When I got my port put in, they put it high on my chest just under my clavicle on my right side. For the first week, it was very painful. The constant pain eventually subsided, but it was always a bit of a sensitive area. I was relieved that the port would come out during my mastectomy, but then I went home with the tissue expanders. I had them just shy of six months, and for the entire time, my right side bothered me. It wasn’t unbearable, but the constant tightness was always tighter on the right, and the spasms that started to really drive me crazy at the end were always on the right side. After last week’s surgery, despite the fact that I was far more bruised on the left, there’s almost no pain or discomfort there. Any residual muscle and back pains (very minor) and most of the weird, tingly irritation is still on the right side! As I was telling Sally this, I mentioned the irony: the cancer was on the left. That explained it, she told me. I chopped off a perfectly healthy breast and now it’s getting even.

Fear Will Not Rule

September 12, 2013 ~ Jamie ~ Leave a comment

Getting dressed this morning, I threw on my favorite tee along with a striped maxi skirt. It’s no surprise to loyal readers that I have a bit of a blog crush on Ashley from lilblueboo. I’m not positive but I think this design may have its origins from the time she was dealing with cancer. At any rate, I rediscovered this tee during my treatment and decided I needed it. I’d do what needed to be done, but I wasn’t going to let fear take over.

It really is a favorite tee, and I didn’t think a thing about wearing it today until this evening, when I was listening to a man recount the events of September 11, twelve years ago. I remembered that day, seeing the plume of smoke coming from the Pentagon from the window of my lab. Driving home on a street where it was uncertain if traffic was one way out of the city (like in afternoon rush) or two ways, like it usually is at that hour. Sitting on unpacked moving boxes in the living room of our brand new house, watching network coverage because we hadn’t gotten cable yet. And I remember a few days later, after the figurative and literal dust had settled, driving back to Georgetown and being greeted at the end of the Key Bridge by heavily armed National Guard troops. Those were scary days, and we all made a choice, whether or not we knew it. We decided that week. Fear will not rule.

Brighter Days

September 11, 2013 ~ Jamie ~ Leave a comment

(source)

After a long surgery Friday and a rough, sore Saturday, Sunday was the start of better days. By yesterday, I really felt almost normal lots of the time. I’m still tender in some spots, but the freedom of being without those awful tissue expanders is amazing. All of the muscle tightness and spasms are gone, and that’s a huge thing! I could tell the difference instantly after surgery and I continue to be amazed (and relieved) at how much different I feel.

I think I’m going to have to work pretty hard to follow all the rules– restrictions on lifting and activity– because it really doesn’t hurt when I get close to the limits. But if that’s the most I have to worry about, I count myself very lucky.

Recovery, Take Two

September 9, 2013 ~ Jamie ~ Leave a comment

Surgery went fine in Friday. I ended up being in surgery for almost five hours, but I like to think that’s because my surgeon is very thorough and wants to be sure he does the best job possible. I didn’t realize it right away, but that’s actually about as long as the original mastectomy. I didn’t need to stay in the hospital because the pain level was much lower, but it did take a while for me to shake the anesthesia. Having not eaten at all on Friday, I was shocked not to have an appetite until around Saturday afternoon. Even Sunday, meal time sort of felt more like I was going through the motions. For me, Pringles are the perfect post surgery food, light and salty, and they’ve been my go-to these past couple of days.

Speaking of pain, I really wasn’t expecting too much. It certainly wasn’t as intense as last time when I required a morphine pain pump to get through that first night. But the Percocet I took didn’t quite do it Friday night and I didn’t sleep well. Saturday was rough (though not at all unbearable), but thankfully that night the pain dropped off enough to let me sleep and Sunday was a much better day. I’m not supposed to lift anything over five pounds for a couple of weeks and reaching too high is tough at the moment, but I really do feel like I’ll be pretty much back into the swing of things pretty quickly. Back in the swing of things, that’s right where I want to be.

Surgery: Check.

September 6, 2013 ~ Jamie ~ Leave a comment

Maxi skirt: check. Reading material: check. And that’s about all I’m going to need for the next few hours. I’m checked in and waiting for my 9am surgery time, eager to get this last surgery checked off my list. And since I haven’t been sleeping great, I’m looking forward to some peaceful, drug induced sleep. But first: fall fashion mags. Which I get to read in peace. Not so bad, really.

Post Surgery Wardrobe

September 4, 2013 ~ Jamie ~ Leave a comment

skirts

(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.

Pay It Forward

August 30, 2013 ~ Jamie ~ Leave a comment

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.

Countdown

August 28, 2013 ~ Jamie ~ Leave a comment

countdown blood tests

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!