Archive | January 2014

How do you like my sleeve?

My new LymphaDiva sleeves came in, so I picked them up on my way to the Cancer Center (more on that appointment in a later post). The woman I’ve been working with at the Pennsylvania Artificial Limb and Brace Company (yeah, it’s a mouthful) has been extremely helpful and knowledgeable about what’s available to help a breast cancer patient.

First, we tried on the sleeve.

The Flutter LymphaDiva sleeve and gauntlet

The Flutter LymphaDiva sleeve and gauntlet

I’m pleased with the pattern choice I made. I also got a plain beige one to wear under long sleeves, but I wanted to try on the pretty one first. I had help putting it on this time, and I’m sure it will be much more difficult to do on my own since it’s so snug. I got the small short sleeve and the small gauntlet (for my hand). The sleeve itself isn’t too noticeable when I wear it, but the gauntlet makes the muscle in the ball of my thumb cramp up. I might wear the sleeve around just to get used to it, but there’s no way I’m wearing the gauntlet unless it’s absolutely necessary.

Since I was there, I mentioned to the assistant how lop-sided I am after the final fill on my expander. It’s going to be months before I get the expander exchanged for the implant, and I was wondering if there was anything I could do to even things up. Turns out there is. I can get a breast form to up the size on my left breast so it matches the expanded right side. I can also get a partial form for the right side so there isn’t quite the drop off on the underside of the breast. If I’m going to go in that direction, I probably want a mastectomy bra to hold the forms in place as well, so I’ll have to go back for a fitting and to pick out a style that will work without irritating my port.

Oh, and while I’m at it – check out the hair!

Look - there's hair!

Look – there’s hair!

It feels like real hair, finally, and you definitely can’t see my scalp through what’s come in. It’s even long enough to stick up occasionally! I’m still waiting to get to the point where I can style it, but at least it’s enough to keep my head warm around the house now.


Genetic testing

Friday morning I had a genetic counseling session. I was really worried I wouldn’t be able to make it. I was in serious pain the night before from my expansion and woke up feeling nasty from taking pain meds on an empty stomach. Luckily, a little breakfast and a nap on the couch made me feel human since it would be a couple of months to get another session.

Because I was diagnosed with cancer before I was even 40, I am a candidate for genetic testing. Before you even go in for testing, you have to do a family history – name, age and health (any cancer, reason for death) for myself, my siblings, my parents, aunts, uncles and cousins, and my grandparents and their siblings. I could guess up to my parents’ generation, but had no clue on my grandparents’ generation. After a phone call to my mother, who had some genealogy information for both sides of the family, I was able to finish the paperwork.

The genetic counseling session was a teleconference with a nurse from Magee Women’s Hospital in Pittsburgh. I really appreciated not having to drive to Pittsburgh to do the test (in fact, that might have been a deal-breaker for me). The counselor’s goal is to ensure the person getting tested understands what the test is looking for and what it means if it comes back positive or negative.

The test is solely for the BRCA1 and BRCA2 mutations, which account for less than 10% of breast cancer. The test uses two methods to test for changes in the gene – one to look for mutations in the gene, and a quantitative test to look for additions or deletions. The genes are on two separate chromosomes, and it is very unlikely that you would have both mutations. They are autosomal dominant genes (you only need one copy to get the negative effect) and affect how the cell will repair breaks in your DNA that occur on a regular basis as you go through life. If the test finds a change in the genes (a SNP) that is not the known BRCA mutation, the company keeps the information on file to see if it shows up in other genomes and would be something to pursue.

If the test comes back positive, it increases your risk of developing breast cancer (surprise, but also in the second breast in my case) in both men and women, as well as ovarian or prostate cancer, pancreatic cancer, and melanoma. Using birth control for more than six years significantly reduces (by about 60%) your risk of ovarian cancer, but there’s very poor testing for ovarian cancer so often removal of the ovaries is recommended (reducing your risk by 96%). A preventative mastectomy will reduce your risk of developing breast cancer by 90%, otherwise you start breast cancer screening at 25 with twice yearly physical exams, and yearly mammograms and MRIs.

The test itself was extremely simple – swish with Scope and spit into a tube. I couldn’t eat or drink anything an hour before the test and I had to make sure I got at least 20ml, but that was the extent of the test. Based on my family history, I’m looking at a 1% chance of having a BRCA mutation, but it’s still worth testing, mainly for family members. I’ll get the results in a couple of weeks!

Expansion #3

Goodness, when Dr. Kang mentioned the expansions get more difficult, he wasn’t kidding. I did take the Valium before I went, and I couldn’t even tell. There was a fair amount of grunting in pain as the expander was filled and I really wondered if I needed the full 100ccs added. I did take pictures this time, so let me walk you through the procedure with visuals.

I go into what I call “the expander room” since that’s all that seems to happen in the room.

The expander room with the hot, bright lamp.

The expander room with the hot, bright lamp.

I’m not sure what the machine in the corner is, but Dr. Kang uses the light over the bed. When he turns it on, it’s noticeably warmer where it’s shining on me. After I’m escorted into the room, I get to put on the vest.

My high quality vest

My high quality vest

It’s got two snaps and it’s sleeveless. Unfortunately, the room isn’t very warm so I try not to shiver too hard while I’m waiting for the doctor. Shivering uses chest muscles and using chest muscles hurts. Once Dr. Kang comes in, he finds the port for the expander using this device:

The magnetic dousing rod.

The magnetic dousing rod. The silver part is a magnet.

Once he finds the port, he accesses it with a needle:

The access needle

The access needle

I realized when I took the picture that this is a looong needle (everything below the green device is needle). I’m not sure if the whole thing gets put into the expander, because I won’t look. I get a little woozy when I see needles hanging out of my skin. Dr. Kang then attaches a large syringe.

photo(3)He fills this twice from the saline bag and pushes the saline into the expander.

This is what 100ccs of saline looks like, with a pen for comparison.

This is what 100ccs of saline looks like, with a pen for comparison.

I know 100ccs doesn’t look like much, but oh did it hurt. The pain was much more intense in the muscle under the arm this time, although the pain across the chest was there as well. In fact, the pain radiated all the way around to my shoulder-blade. Just taking too deep of a breath hurt badly, let alone moving my torso. And let me tell you, those chest muscles get used a lot just existing, and trying to sit or lay down, or anything else you want to do.

I had to up the ante on the meds and add pain meds. The Valium alone just didn’t cut it. In fact, the pain woke me up every four hours overnight when the hydrocodone wore off. Sadly, I discovered this morning that taking pain meds on an empty stomach is a bad idea. I woke up slightly nauseous and light-headed. I ate a bit of breakfast and then crashed on the couch for two hours. That was enough to return me to the land of the living. It’s not exactly comfortable, but at least I’m down to manageable pain instead of excruciating pain.

I am so glad that’s the last expansion, and didn’t decide I wanted to be bigger. If I was on the typical schedule and undergoing chemo at this point, I would have been able to split that last expansion into two, but since I’m supposed to start radiation stuff next week I need to be done with the expansions. The skin doesn’t expand well after radiation (it gets a ladder-like appearance, apparently). It doesn’t heal all that well either, so I’ll have to wait a couple of months after radiation is over before I can get the expander removed and the implant put in. Being lopsided for months won’t exactly be fun, but at least the pain of the expansion will go away soon.

Expansion #2

Yesterday was my second expansion from Dr. Kang. I was a little more prepared this time (I was not in any way expecting the first expansion last Friday) so I came with questions for the doctor. He’s not great at small talk, but he’s very good at answering questions I might have.

The procedure goes as follows: I change into the vest (I’ll have to take a picture next time I go) and lay flat on the table, with my arms at my sides (which is surprisingly hard to do. I actually tucked my hands under my body just to keep them where they belonged). Dr. Kang searches out the fill port on my expander using a little magnetic dousing rod suspended on a circular device. The needle goes in my skin (I feel just a little prick – apparently I still have pain receptors in that part of my skin, even if I don’t have touch receptors) and he pumps 100ccs of saline into the expander.

The first time, I didn’t really feel anything until Dr. Kang was at the second half of the expansion. This time, I noticed the fill much sooner. Good thing he warned me each subsequent fill is more uncomfortable or I would have worried something was wrong. As it was, I decided it was time to fill the Valium prescription he’d given me last week. I needed all the muscle relaxation I could get. As it is, any time I cough or sneeze, I really wish I hadn’t.

I did ask why the expander is put under the chest muscle, since it causes so much of the pain. There are two reasons. The first is just to provide more coverage over the expander. If there’s a problem with the skin healing, at least there’s a layer of muscle between the expander and the outside world still. The other reason is that muscle has a better blood supply than skin, which reduces the chance of infection, which is always a worry when you add something to the body.

It’s 24 hours out from the expansion and I feel much better than I did last night. The giant grapefruit under my skin isn’t exactly pleasant, but at least I don’t have constant chest pain because of it. I’ve got one more expansion scheduled for next Thursday. I may take the Valium before I even get to the doctor’s office this time so I’m a bit better prepared for the pain.

Graduation day!

Today was my last day of PT!!! Not that I didn’t love the ladies I worked with, but I would need to find somewhere to stash the kids for two hours twice a week, and that becomes difficult. I’m sure what I should really be celebrating is the improvement to the range of motion in my shoulder (and I am), but at times the scheduling becomes more important.

Amanda did remeasure my range of motion in the right shoulder, and it’s nearly the same as the left shoulder. I have just a bit better I can do lifting my arm from the side, but I think most of the pulling that’s limiting my motion comes from my chest muscle and the expansion. I did have to promise to do my stretching exercises on a regular basis, especially once radiation starts, since that can tighten up muscles and skin. It’s important to keep the muscles and skin loose for the expansion as well, so I need to remember to do the exercises before my fill tomorrow morning.

Graduation present from the physical therapy office.

Graduation present from the physical therapy office.

Overall, I’m feeling much better today. I caught a cold over the weekend, which completely bummed me out. I’m finally feeling nearly back to normal in the shoulder and chest (I can lift my arm and not feel any of the cording/pulling in the armpit anymore), and I get sick. I just want to feel better, is that so much to ask? I went to bed early last night and finally woke up feeling back to normal today. I still have a cough, so I’m not 100%, but at least my energy level is back to normal.

My chest is a bit sore today, though. I’m wondering if I overdid my exercises yesterday. I also think the cocoa butter I put on last night sensitized the skin around my incision so it’s hurt all day. Won’t be using that again any time soon! The other thing I’ve noticed is my eyelashes are growing back in. I didn’t realize I’d lost nearly all of them, but they’re all really short and curly. It’s surprisingly irritating – vaguely itchy in the eyes because of their length.

The next step

Last Thursday, I met with the oncologist and the radiologist. Dr. Li’s visit was really just a check-up. I had gotten blood drawn the day before so he could check my levels. Everything was back to normal – no anemia, liver enzymes were back within expected ranges, and even my iron levels were good. We did talk briefly about whether or not I would benefit from taking hormone therapy (something like Tamoxifin). The tissue from my lymph nodes was weakly positive for progesterone, which means I’ll get a minor benefit from the drug. We decided to try it (after radiation is done) and see how well I tolerate the drug. If the side effects are too bothersome, I can stop taking the drug.

The big meeting was with Dr. Figura so we could discuss what radiation would entail. Once again, the particulars of my case are causing difficulties. The normal sequence of treatment for breast cancer is surgery, chemo, radiation, and during chemo you do all the reconstruction. Having already done chemo, I don’t have that window of time to fill the expander and apparently, skin doesn’t stretch as well after radiation. Once I start radiation, I can’t make any changes to the size of the expander either since it changes the geometry of the area being irradiated.

I didn’t realize it would be such a problem. I know Dr. Engel had mentioned that reconstruction would be difficult after radiation, but I will admit I kind of ignored him. Dr. Figura and Dr. Kang talked about the case and were able to come up with a viable plan that wouldn’t push back the start of radiation too much. For once I’m happy I’ve got a small chest size since that means I won’t need too many fill sessions. In fact, with the first fill the very next day, I’ll be done in two weeks with two more 100cc fills. I’ll be carrying a giant boulder around on my chest while undergoing radiation, but at least we can get it done beforehand.

And to close, another gown pattern to add to my collection:

A particularly hideous gown pattern

A particularly hideous gown pattern

So many doctor visits

One of my New Year’s resolutions was to go to less doctor’s visits. So far this year, I am totally failing at that resolution. Last week was the worst so far. Ready for the schedule?

Tuesday – physical therapy

Wednesday – bloodwork

Thursday – meet with Dr. Li (the oncologist) for a check-up and Dr. Figura (the radiologist) to discuss the next stage of treatment

Friday – physical therapy, a double Herceptin treatment (to make up for the one I missed right after my mastectomy), a trip to a medical supply company to discuss mastectomy bras (don’t need one at this point) and lymphedema sleeves (I’m getting a plain beige one for hockey and under long sleeves, and a patterned one), and a trip to Dr. Kang (the plastic surgeon) for my first fill on the expander.

The sleeve pattern I chose from Lymphedivas.

The sleeve pattern I chose from Lymphedivas.

This week, I only have two physical therapy appointments and another fill from Dr. Kang. On top of all the doctor’s visits, I did some homeschooling, went to two hockey games, and a gymnastics meet. So, I’m a little behind on blogging. I promise some details soon, but now I’m going to bed so I can get up early tomorrow to do physical therapy before StatsGuy has to go to work.