Itchy

I think I already named a blog entry, “Itchy,” but I am again. Itchy, that is. All over my abdominal incision, my breasts, and my back. No idea what that’s about. The weird thing is that I have no sensation in most of my breasts, so I feel the itch, go to scratch, but then I don’t feel the scratching. It’s odd.

You Suck Myriad

Sue Friedman’s latest blog entry explains why Myriad is so disgusting (my words, not hers). When I needed to get tested for BRCA, the cost was somewhere near $3000 – my graduate student insurance did not cover the test. I was able to get the cost subsidized somehow – through a registry of Jewish genetics in New York – I don’t remember what it was called exactly (it was seven years ago, but I think it was through Yeshiva). My parents paid the remaining $350 since I was of course poor at the time. I’m glad to know most insurance now covers this testing, but Myriad’s “ownership” of the gene puts many people at risk of not being able to access the information they need to empower themselves to take their health into their own hands.

Post-Hiatus

It’s been a while since I’ve written. Writing in ‘real time’ has become a bit more challenging lately. My son was sick (bad cold and ear infection) and that sucked most of the life out of me for about a week. We went on a quick trip to visit family, which sucked the remaining life out of me. And, I started back at work, which actually brought a little of my life back! Tomorrow will be two months since my surgery – I can’t believe that I feel as good as I do. If on January 29th, someone had told me I’d feel pretty much normal in two months, I would have never believed them.

So, updates… let’s see. My abdominal incision is completely fine – nothing interesting oozing out, everything’s closed up; the scar is still scary to look at, but it doesn’t bother me at all (and who else is looking at it?). My belly button and stomach are no longer sore, but I’m still wearing the granny panties because my regular underwear rubs against my abdominal incision and that’s still a bit annoying. My belly button has healed a bit strangely – it looks normal but when I run my fingers over it, I can feel that the scar is not exactly smooth. You can see in the picture below that there is a lip of skin on the bottom and top – just a little ledge where there was probably some overlap in the sewing:

Belly button

I’m mostly numb from about an inch above my belly button down to below the abdominal incision. It’s not all that strange for me though – I had been mostly numb in that same area since my c-section anyway.

My breasts are another story. I still do have a pulling feeling under my right arm from the SNB; I only really notice it when I carry my work bag, which is usually heavier than it’s supposed to be, or if I reach backward for something (like in the car). For the most part, I can squeeze and smoosh to my heart’s content and feel very little soreness; this is a huge improvement since, I think I mentioned, I’ve had breast tenderness for several years now.

My left breast still has an opening in the incision. It’s healed about half-way, but the rest is still rather open. This continues to frustrate me as it thwarts my efforts to get back to the pool. Nonetheless, I have cleaned off my vanity table of all first-aid supplies. Gauze, saline, and creams are all back in the closet. There’s nothing I can do to treat this wound, so there’s no reason to continue to look at the reminder of all that grossness!

I’m surprised to say that what I’m most worried about now is aesthetic. Because I don’t have nipples, my boobs are a strange shape. From a profile, they look like domes with a quarter resting on top of each – they’re flat in the center (it’s my pseudo-areola). I can see this when I look down, particularly if I’m wearing a tight shirt. I worry that others can see it too, although I asked a colleague today and she said I was probably the only one who notices. We also discussed that no one should really be staring at my chest long enough to determine any extent of roundness or flatness. Still, when I see Dr Gimbel next, I will ask about possibly filling that area with a bit of fat in order to round it out some more (that is, if I do decide to have the revision surgery).

Going back to work has been great, but definitely shell-shocking. There was no easing into this. I had 56 assignments waiting for my feedback, 70 students wondering who the hell I was, and the building I teach in seemed to forget who I was – I couldn’t unlock any of the classrooms with my code, I couldn’t get into any of the media carts. It was definitely a bit overwhelming, but eventually everything was settled, and all in all – it felt way better than a day wasted on the couch watching daytime talk shows.

Today we had a department faculty meeting. My Chair welcomed me back to a round of applause, which was rather embarrassing. Many people hugged me, which I found to be so interesting. I have only been at this job since August, so really, no one has known me longer than a few months. But I think many people recognize that I’d been through something difficult, particularly the women. And, it’s kind of funny how no one wants to hug me too close – people are definitely worried about hurting me. It’s sort of sweet.

Last night, my husband and I had a rather emotional talk – he confessed to me how worried he’d been the last few months, even as I’ve gotten better and started to go out more, take care of myself, etc. He worried about what he’d do without me around. While I tend to be quite practical about most things, he is the emotional one. As I’ve said, I don’t even really think about myself as having had cancer – it is not something I ever think about now that this surgery is over. But I guess to him that concept is much more real and he worries about me. We decided, now that I’ve significantly lowered my chances of a recurrence of breast cancer, we both need to make our best effort toward being as healthy as we can, for our son’s sake. We’re both too sedentary, eat too much crap, and our little guy is very soon going to outrun both of us. I’ve already eradicated our house of most processed food, products with excess sugar, chemicals, and overall bad-for-us items. I’m replacing as much as we can afford with organic and natural options. And if spring ever gets here, I’m hoping we’ll all be on the move a lot more.

So, two months, huh? Things haven’t entirely returned to normal. I still have another week and a half before I can lift my kiddo, which means my parents are still around every day to help out. But really, in terms of how I feel physically and emotionally, I couldn’t be happier.

The Power of the FORCE

The FORCE is strong with this one – I’m sure it’s a pun many BRCA+ bloggers have made at some point if they’ve talked about the FORCE organization and they’ve seen Star Wars (who hasn’t?).  I just think it’s amazing how thorough, informative, and extensive this organization is, when really the BRCA community is quite small.  But the outcome of what this organization does in terms of educating BRCA carriers is huge – FORCE saves lives on a daily basis by informing women of their options so they can actually prevent cancer.  They also help by putting BRCA mutants in touch with other mutants.

This afternoon, I had coffee with my friend, Robin. When I moved back to Pittsburgh (after a 15 year hiatus), one of the first things I did was contact the outreach coordinators of the local FORCE chapter.  Robin wrote back to me almost immediately.  We met for lunch soon after and immediately hit it off.  Since then, we’ve met for coffee a couple of times, kept in touch via email, and I went to a FORCE meeting she organized at her home.  Robin started an email list with all of the women from the meeting, and we’ve been writing to each other through that list.  Several of the women have surgeries coming up in the next few months, and I hope we’ll be able to support them.

I always find it a relief to spend time with Robin because she gets it!  I can talk about being nipple-less, I can talk about incisions, I can talk about having a hysterectomy – she knows what I’m talking about because she’s gone through it too; she’s not just listening like my friends do (and thank god for them too) but secretly they’re a bit weirded out by the whole thing.  And Robin is way more informed about BRCA than I am (even after spending the last seven years reading about it), so she knows a lot!  While I do have cousins who have gone through this, they’re not local, so we don’t talk that frequently.  It’s just nice to have someone local to talk with.  I hope I’m able to give her a bit of the same.

The latest on my recovery: last night I started having this weird pain in the vertical incision on my right breast.  It is very tender smack in the middle of the incision (between the pseudo-areola and the crease underneath my breast) and it hurts to just touch it.  Pressing on it is obviously worse.  It’s not so bad if nothing touches it, but it’s definitely frustrating since my son spends a lot of time sitting on my lap and he often likes to head-boob me (this is like head-butting, but instead of butting heads, he is butting the back of his skull into my boob).  I won’t give up that lap time though!  I don’t see anything visible in the spot, and when I press on it I don’t feel anything solid or different than when I press on the incision on my left breast.  I’m trying to remember if I bumped into something or leaned against something at some point; basically it feels like I’ve been stabbed there, but I don’t remember ramming anything pointy into my boob recently.  Oh well.  Each day, it’s a little pain in a different place, but it’s all manageable.  I should count myself lucky for not having any major problems.  The left breast open incision area is almost closed – I think I might be able to get back in the pool again on Tuesday.

Guilt

I’m Jewish, so there’s a lot of it for a variety of reasons – I give it and I get it.  Lately, I’ve been feeling a lot of it.

Like right this minute, for instance: it is 1:30pm, I am still in my pajamas, and I am still in bed.  I got up at 7am, had breakfast with my son and husband, and got back in bed after they’d left for the day, at around 8.  I just felt really tired, like I hadn’t slept at all last night.  I then slept until 11:30.  I got up, grabbed some yogurt, and brought it back into bed with me.  And here I’ve been.  I’ve been doing a bit of work here and there on my laptop.  Mostly I’ve been snuggling with my cat and browsing Facebook.  Bon Jovi is going to be on Katie Couric’s show, which is on at 3.  I think I may stay right here and watch it.  And I might even take a nap before it starts!

But I feel guilty.  My husband is working a nine-hour day at an annoying job.  My dad will leave work early to pick up my son at school and bring him home because I still can’t lift him.  And what will I have done all day – nothing, diddly squat.  I feel like everyone is going out of their way and doing extra, while I just watch.

Yes, I tidy up the house.  Yes, I do the laundry and the cooking.  But that doesn’t seem like a whole lot when it takes less than an hour a day.  I’m working on writing two books, but it also doesn’t seem like “work” when I do it from bed (I could do it from my home office, five steps outside of the bedroom, but I’m just too comfy here).

I’ve never been particularly good at cutting myself slack.  It’s especially hard when I read stories of people who’ve had this same surgery and have gone back to work after a month.  My friend MJ had a mastectomy and went back to work three days later!  So it doesn’t even really help to remind myself that I’ve been through a lot: fourteen hours of anesthesia, weeks of narcotic pain medication, 15 pounds of flesh removed, my arteries and blood vessels messed with, lots and lots of wound care.  People have been through this and more, and they’ve been much more active earlier.

Yesterday, I spent the whole day at work.  I drove there at 7 and was at my desk by 8:15.  I sat in on a class, had two meetings, lunched with a friend, and then a two-hour workshop.  I was yawning during the workshop, but in my defense, it was really boring. The drive home was fine.  And I wasn’t even too exhausted when I got home.

I think the problem is that I stay home most days.  I only have another 10 days before I return to work, so I feel like I should use them to my advantage.  Part of me says that advantage would be getting out of the house, going to a coffee shop, and doing some serious work.  Another part of me says that advantage is resting and relaxing before the craziness begins.

I don’t know where I’m going with this anymore.  I guess I feel most guilty that I’m on a paid medical leave, and I probably could have gone back to work last week.  It would have been sort of silly to go back for two weeks before spring break, but I could have done it – it would have saved my department some money, and I’d be feeling better about myself.  I feel like I have to defend why I’m not at work right now.  There’s no reason I can’t be.  I feel guilty that my husband and parents are still doing most of the caregiving for my son, when I think I’m perfectly capable of doing so.  It drives me nuts that I can’t pick him up, give him a bath, put him in his crib, when I feel perfectly able to do so. My responsibilities for him have been relegated to watching Sesame Street and making his lunches.

I guess there’s an emotional side to all of this that goes beyond the frustration of being in pain.  I’m really not in pain anymore.  But I still feel sad about how this has limited me, even if it’s only for another ten days.