Disappointing Glitch (graphic pics)

Dr. Gimbel had said I could start swimming again on Thursday as long as my incisions are completely healed. Unfortunately, I still have that small spot on my left side – the one that was really leaking for a while. It’s still a bit open, so I thought it would be best to check with him before potentially contaminating myself. While taking pictures of it to send to him, I also noticed on my right side a strange blister on the incision. I sent the following pictures and email:

Right side of abdominal incision (small sticky spot)

Left side of abdominal incision (blister)

Here is our email exchange:

You said I could start swimming again starting Thursday as long as all of my incisions were healed. The breasts look great – they’s so seamless in fact that I can’t even feel a scar when I run my finger over them. I still have two spots on my abdomen that I hoped you could look at (pics below). The first is of the spot I showed you at our last appt – it’s smaller now, it’s not dripping actively, but it is still a bit sticky when I touch it. The second is on the other side and it feels sort of like a blister – it feels like there’s fluid in there if I press on it (don’t worry – I’m not trying to open it!). So, as much as I’m dying to get back into my exercise regimen in the pool, I definitely don’t want an infection. Do you think these look ok, or should I still wait to go swimming?

I’m glad you are doing well. These little persistant areas are not too uncommon, and usually just take time to heal. I think you should probably wait for things to be all sealed up before you swim to avoid any deeper contamination that might set up an infection. Can you do walks, treadmill, stationary bike, etc until then?

Also, I am planning a hysterectomy at the end of this year. Can I still have laparoscopic surgery through my belly button and abdomen now that I’ve had this done?

Yes, you should be able to have the laparoscopic procedure done as usual once everything is healed (about 6 months post-op).

I went to a FORCE meeting (that’s the org that supports people with BRCA mutations) on Sunday – several local women looking into surgery. I recommended you highly!

Thank you for your kind words!
Best,
MLG

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So, I’m disappointed. For me, swimming is 50% about physical wellbeing, and 50% about mental wellbeing. I find it relaxing, therapeutic, and meditative, and of course it makes my body feel better – stretched and flexible. He suggested treadmill, etc, but frankly, I hate the gym and wouldn’t go there at all if there wasn’t a pool. But, I will continue to take walks outside and I have DVRed some yoga, which I will also start doing.

I did write back to ask if I have to wait for both of these ‘problems’ to go away, and he said just to wait for the right side opening to close. I also asked him what that blister is – he said it’s probably a suture knot trying to free itself and that it’s nothing to worry about. Out of curiousity, I googled “suture knot blister” and was able to find this veterinary advice, which while about a dog does seem to describe what I have. This is some info about humans who’ve had tummy tucks, and it also seems to describe what I have (although mine does not have any pus, thank god).

Now that I’ve emailed him like six times, I realize I forgot to ask about another potential problem – a thread of some kind is actually popping through the skin of my right breast to the right of the pseudo-areola. It’s like a little piece of clear fishing line that’s just poking up out of the skin, definitely less than an inch (I tried taking a picture but it’s so small, it doesn’t really look like anything). If I tug on it though, there’s resistance and I feel a bit of discomfort throughout my breast. I wonder if he’d consider that to be an opening too. Now I’m paranoid; I never really thought about how scary pool water is.

I really think that small opening on the right side could close any day now, and I think with keeping it dry and not scrubbing too hard in the shower, it probably could be gone by the weekend. My new goal is to be back in the pool on Monday, unless the skin around the stitch on my breast seems to have changed. Ugh. By the time I’m allowed to swim again, I’ll be back at work and won’t have any time to do it anyway.

Therapeutic Encounters

I’ve had a lot of therapeutic encounters in the last 24 hours. Yesterday, I went to my first local FORCE meeting. I got in touch with one of the co-organizers, Robin, back in December, and we have met for lunch or coffee a few times. She is really great and helped me so much during the chaos that was most of January. All of the women were, of course, BRCA positive. Some had had cancer, some hadn’t. Many had already had prophylactic surgeries, mostly with implants. Some were considering their surgery options and figuring out how to navigate the local hospital system and meet with the doctors. It was very cathartic to listen to their stories and to tell my own. It was hard to hear that so many of these women had mothers or close relatives who’ve passed away – I am so fortunate that my cousin discovered our mutation a while back; she really did save all of us in my father’s and my generations. While my grandfather’s generation wasn’t so lucky, at least they did not die in vain – their cancer diagnoses taught us all that there was something lurking in our family, and now we’ve been able to stop it (well, some of us sort of met it halfway).

The meeting was educational as well. As I plan for a hysterectomy, probably during my winter break at the end of this year, I was excited to hear a woman talk about her DaVinci surgery done at Magee. I am very interested in that surgery but hadn’t been able to locate anyone doing it at Magee, so this was really helpful to discover. She had her surgery with Dr. Krivak, and I will definitely make an appointment to meet with him soon (not too soon though – my surgery will probably be in December and UPMC seems to have a lot of turnover). Everyone was really open and honest about their experiences, sharing info about doctors and types of surgeries. I think an interesting part of being BRCA positive is that your life really isn’t about cancer – it’s about surgery. When you get your diagnosis, you don’t start educating yourself about cancer. You educate yourself about MRIs, mammograms, hysterectomies, mastectomies, breast surgeons, and plastic surgeons. There’s no need to educate yourself about cancer because your plan is to avoid it! It was nice to meet women who are also somewhat obsessed with surgery! I’m looking forward to going to another meeting soon.

This morning I saw my therapist for the first time since the surgery. I was glad to be able to report to him and thank him for his suggestions of the guided imagery and breathing exercises; both really seemed to work before the surgery (although I acknowledge I had such a small window of time to plan for this surgery, I really had very little time to become anxious!) and after. In our future sessions, he will help me use breathing and tapping exercises to work through some of my post-surgery anti-hospital anxiety.

I’ve also begun researching a massage therapist with expertise in mastectomy patients. This will also be therapeutic – hopefully I can see someone soon to get rid of some of the back pain I’ve been having (although, so far I have been at my desk with a pillow and some tylenol for about three hours and I’m doing much better than previous days). I have calls in to some family friends who get frequent massages, as well as to Dr. Ahrendt’s office to see if they might recommend someone at Magee.

Three Lessons Learned

Today, in the span of about four hours, I learned three very important things (and all three reveal that I’m somewhat of an idiot!).

(1) If you have soreness, take tylenol. Miraculously, it works. Why did I not think of this earlier? Who knows. It took a suggestion from my mom for me to remember that I have a medicine cabinet chock full of Tylenol, Alieve, and Advil. When I got ready for bed this evening, I removed my abdominal binder, bemoaned my sore tummy, took three tylenol, and got into bed. Within a half hour, soreness was gone. Who knew?

(2) Just don’t bother shaving the armpits. I did it this morning; I was able to get a close shave and got all of the random patches that remained from my last attempt. The problem – this evening, I’m itchy. And because I’m still sensitive under there, it hurts to scratch it.

(3) Pillows! I was looking online for a tooth pillow for my son when I came across a lumbar pillow. Duh. Why have I not tried a pillow at my desk chair? I ordered the lumbar pillow, but tomorrow I will try a regular pillow at my desk to see if this improves my back pain. I hope so!

Belly Breathe

We watch a lot of Sesame Street in our house. When I woke up after surgery, I kept reminding myself of this song staring Common, Colbie Caillat, and Elmo (of course).

I sang it constantly in my head during those first few days, just trying to get through the frustration of everything in the hospital – the song itself is somewhat relaxing and its message is therapeutic too. Before surgery, I wrote how listening to the guided imagery helped me to stay relaxed – I really didn’t stress at all before the surgery, not even in the pre-op area. My therapist is constantly telling me that if I concentrate on deep belly breathing, it can be quite relaxing and help to mitigate stress. This is something I tend to have trouble with – like during the biopsy when I realized I was holding my breath for so long that I was afraid to let it go because I didn’t want to move! But laying in the hospital bed after surgery, I had a lot more time to remind myself to breathe, and I sang this song in my head (along with the entire soundtrack to Pretty Woman, which I was convinced was playing through a speaker somewhere in the room and I made my mom listen at every vent and wall, although I was the only person who could hear it – ah, morphine) until I wanted to poke my ears out with whatever jagged object I could reach (unfortunately, they don’t leave a lot of jagged objects lying around in hospital rooms).

Well, since Thursday, my belly has had its own time to breathe now that I don’t have to wear the abdominal binder. But that is proving not to be as relaxing as I thought it would be. On Thursday I was in pain by the end of the day not wearing it. My whole belly was sore as well as my back. On Friday I wore the binder, and even though my belly felt better, I still had the annoyance of the itchiness, the velcro biting, and the constant rollover (sort of like when pantyhose roll down over your stomach as they off). Yesterday, we went out to do errands in the morning, went to the library for story time, and then out to dinner with my parents. The whole day (except for a two hour nap) I wore the abdominal binder, along with jeans and a belt to keep them up. When I got home, I couldn’t wait to let my belly breathe! I felt so tight and restricted.

But then, all night, I tossed and turned from the soreness in my belly (along with the soreness of my breasts from laying on one side too long). No position made this feel better. I’m sure it had mostly to do with my jeans and the belt. I think I’m probably going to be stuck in drawstring pants for a while longer (this is something I never thought I’d complain about, but I guess when you wear sweatpants every day, you kind of look forward to a change).

In other news, I’m very excited – this afternoon I’m going to my first local FORCE meeting. I’ll get to meet some other local people who are BRCA+ and hear their stories too. Unfortunately, when I meet them I’ll be wearing sweatpants, but hopefully they won’t judge me too much on that.

Lazy Recovery

Now that I’m physically able to do so much more, I feel like there’s a fine line between lazy and recovery. Most days, I do end up taking a nap in the afternoon. But I find myself wondering: do I really need a nap because my body is recovering and sleep would do it good? Or am I just avoiding my work? Or am I just sleepy because I don’t really do anything active during the day? It’s hard for me to tell sometimes. And I feel like I have all this time off, I need to be producing (articles, research, grant proposals, all sorts of stuff I could be doing now when I don’t have students to work with as well).

Today, after only two hours, I could not sit in my computer chair anymore. My back was just in too much pain. I wanted to push myself to build up my back muscles, but I just felt too defeated after a full week of trying to do that. So I decided to take my laptop to the couch where I could stretch out a bit and possibly get some work done more comfortably. I wasn’t on the couch for more than five minutes before I started yawning, and eventually I was asleep. When I woke up a few hours later, I was really annoyed with myself. Yet, I still feel tired, and I am certain I won’t have any trouble falling asleep tonight. So maybe I do just need the rest. The clock is ticking though – 24 days before I go back to work. I need to get my stamina back up before then, as well as my concentration and a whole lot of writing.

Shockingly, this morning I put on the abdominal binder, even though I was given permission by the dr to stop wearing it. I was sore last night after not wearing it – my stomach felt sore and uncomfortable. So I decided I’d wear it until I get my new Spanx, see how those feel, and maybe ease off of the compression by wearing it only a few days a week (I don’t think I can afford seven days worth of Spanx anyway, and I only have time to do laundry once a week once I’m back at work).

I’m also experiencing a strange stabbing pain in my right breast close to my sternum. It comes and goes. When I press on the spot, it’s sore. Today I’ve just noticed it every now and then – a stabbing for a few seconds and then it’s gone. I suppose this is going to happen now as swelling goes down, things shift and move. I’m surprised also by the amount of sensation I have in my breasts, since I read that many women have no sensation at all. It’s mostly on the inside close to my sternum and the underside of both breasts where I can feel if I touch the skin. The outer sides are completely numb – I can drag my fingernail across and not feel anything – same with the very center of each breast (which I hesitate to call an areola, but is circular and the same size as an areola would probably be; I will henceforth refer to them as pseudo-areolas). While for the first few weeks I had pain in my abdomen and none in my breasts, that seems to have switched now. I have soreness in my breasts, definitely by the end of the day and sometimes a bit throughout the day and if I squeeze them, and I hardly notice my abdominal incision anymore.

Something else I will discuss with my dr is a strange feeling I am having on the top of my right thigh. When I still had the drains in, I taped one of the drains to this spot to keep it from moving around and pulling. When I took the tape off, it was a bit painful (like that normally is), but I didn’t think anything of it. This was almost three weeks ago, and that spot still feels a bit numb and sore if I touch it. I wonder if it has to do with a severed nerve in my abdomen. I’m not sure I see how that could be connected, but it does seem strange that this random spot on my leg seems to have lost nerve sensation.