Lymphedema? Yay! I mean yea

It turns out that yes, I do have lymphedema, aka swelling caused when you have lymph nodes removed. I am now regularly sporting this ravishing compression garment, known in the biz as a sleeve, or as I will refer to it from now on, The Sleeve:

Office selfie. Homemade timesheeet in the background; important numbers to remember business card in the background.

On Monday I went to the physical therapist, Genny, and sat down with her to prove to both of us that I was not swelling, I was just stiff and in recovery from my surgery, because I only lost 4 nodes in my surgery and my friend Dayan lost like 17 and she never had lymphedema, so there.

Five minutes with a tape measure proved that the circumference of my right arm, from wrist to shoulder, is significantly bigger than my left. And, as she pointed out, I am left-handed.

In a way it was a relief to find out that I had lymphedema because it meant that I needed to stop favoring my right arm--no more  injunctions against lifting"nothing heavier than a dinner plate." The best thing I can do, apparently, is to live my life, complete with The Sleeve ($75) and The Gauntlet ($35). I haven't broken out the gauntlet yet because I am afraid Jamie will co-opt it as he tends to do with any of my possessions he finds attractive or useful, and I mean, GAUNTLETS, come on.

Anyway, please note prices. After I purchased them (at a locally-owned pharmacy, of course), I received a very polite text from Andrew:

I'm sure we should try to get reimbursed for these via our so-far excellent insurance, but I'm so stressed out I'm not going to try to do that anytime soon. Which is another reason I'm going to start wearing the gauntlet. Will add a picture of that at another time.

I have noticed, as I walk through the Information Commons in Ellis Library, a few startled looks when students take in the long, "nude" colored elastic band on my bare arm. I thought it was because I was cute or something, but then I realized--it's The Sleeve. It's a sick-person accessory, or it just looks strange, or whatever. I'm not sure. Lymphedema can be (is?) permanent, so it might be something I'm adjusting to for good, along with foobs and a repeated realization of my own mortality. But I've been stretching "to the point of pain, not through it," per Genny, and it seems to be working.

Besides, I start chemo next Thursday and I am too busy being terrified about puking, being sick in front of my kid, losing my hair, and being poor to care too, too much about swelling right now.

Mastectomy day & expanders

I had quite a collection of bracelets before the day was over.

So today I am nearly four weeks out from my bilateral mastectomy (meaning both of my boobs were removed). I just want to record a few memories from that day.

• We, meaning Andrew & I, and my parents, went first to Ellis Fischel for some imaging stuff and onto the Women & Children's Hospital here in CoMO. The last time I lived here, this was Columbia Regional Hospital, but I guess the University of Missouri bought it. They seem to be doing a lot of that these days. 
• Anyway, my initial appointment went fine. I was injected with radioactive dye (radioactive! Jamie loved that idea), which hurt like doo-dah. Then I was directed to a narrow bed, raised up in the air, and photographed to make sure the dye was doing its work. 
• Then my caffeine headache kicked in and it really was the worst part of the day. MY BOOBS WERE CUT OFF AND THE WORST THING WAS NO COFFEE. I couldn't have anything to eat or drink anything and my actual surgery wasn't scheduled until 12pm. I was so cranky I almost forgot to be terrified.
• I just want to take a brief moment to note that, at age 45, I still cannot work my television remote. 
• And so if the worst thing about a bilateral mastectomy is the caffeine headache beforehand, I think it's safe to say that things went pretty well. Namely, the tumor that was initially discovered via 3D mammogram & biopsy in Washington, PA was all the cancer that my awesome surgeon, Victoria Wu, and her compadres, found. Nothing in the lymph nodes (in the end, they took 4). 
• If you don't remember, the tumor was in my right breast. I was somewhat gratified to learn that I did have precancerous cells in my left breast because at first I wanted a lumpectomy, then a single (unilateral?) mastectomy. But nothing malignant, which I am so happy to hear. Maybe the bilateral mastectomy prevented cancer from showing up on the left side--maybe not. But I am happy with my decision, which is the goal that survivors I have talked with tell me to work towards.
• So sometime in the evening, maybe 8pm, I awoke with a huge weight on my chest and looking up at my smiling, sweet parents and husband. It was like I was a newborn baby. Hello there!
• Turned out that the reason for the huge weight was mostly bandages, but not only. To reconstruct my breasts, my first set of foobs were inserted after the mastectomy. 
• These Phase One foobs are called expanders and they are plastic shells that feel like a plate of armor on my chest. "Mommy," Jamie said when he tried to hug me, "your milkies are hard. Why?" Observe:  

From http://reference.medscape.com/features/slideshow/breast-reconstruction.
This thing is inside me. It is indeed hard. And sometimes they hurt. 

• These nifty gadgets were inserted beneath my pec muscles and I now look and feel like a football star in training. Every week or so I go to my plastic surgeon, who is also amazing, and he or one of his residents, or both, take a side and inject me with 60 ccs of saline solution. It doesn't hurt, but you need to sit up slooooowly after they do it, or you might pass out. Just saying. 
• And at the same time that they inserted the expanders, Dr. Colbert (his name is Stephen Colbert, for reals, and I have a little crush on him) and his team puffed me up like a cancerous mushroom with all kinds of good fluids, which then drained out through four (4) of these, two sprouting from my each of sides like water balloons:

JP Drains. Empty thrice a day and record volume. I got the first 2 out after a week and the last 2 after two weeks. 

• So I guess officially I was an arachnid for about 2 weeks. Hmm.
• Once the drains were out and I was off the Percoset-Valium combo that made getting my boobs removed, peeing in a plastic bucket, and generally losing a lot of self-control bearable, I went back to work. For 2 whole hours. That was a day of victory, Wednesday, September 10, 2014. And then I took a three-hour nap afterwards. 

That is all for now. More to come re: lymphedema: yea or nay? and CHEMO. Yep. There it is.

Back home

Pleasantly comfortable this evening. Cocktail: Percocet, Valium, and gummi lifesavers. All of my sisters are here. Andrew and Jamie are with his folks. Mom and Dad are safe at home too. I am lapped in love and so so grateful.

When I was about 10 I loved to read the Catholic Digest that we subscribed to just as much as I enjoyed Little House on the Prairie, How to Eat Fried Worms and Trixie Belden. One day I read an article about a woman who had breast cancer and it must have scared the crap out of me because I became convinced that I had it. I felt a lump in my nearly nonexistent boob and my mom took me to the doctor, who felt me up, then explained to me that I did not have cancer. I was growing breasts.

Later boys snapped my bra in the hall. Later still I discovered Victoria's Secret. Best of all, my healthy little boy, who is sitting next to me eating a bagel, nursed for several years (yes, I was one of those mothers). Now I am going to go to Ellis Fischel, and then the Women & Children's Hospital, for a bilateral mastectomy and reconstruction surgery. I should be home tomorrow sporting bandages so tight that they will feel like a plate of armour, they tell me. I might not be able to blog for awhile. But if you're reading this, think of me. Get a mammogram if you think you might need one, too.

Introduction

Soon I will be moving to beautiful Columbia, Missouri, which is located in Boone County, Missouri to start a new job as Science Librarian at the University of Missouri. I will be beginning treatment for invasive ductal carcinoma, aka the commonest kind of breast cancer, shortly thereafter.

Timeline from diagnosis until a week ago. All of this took place in BeauWashPA:

Thursday, June 19, 2014: Regular 3D mammogram. A few hours later I get a call requesting my presence at a second mammogram and an ultrasound because they "want some more views." Skeered. They tell me to be prepared for a possible biopsy too.

Tuesday, June 24, 2014: Second mammogram and ultrasound does indeed turn into biopsy. The radiologist tells me that she will recommend surgery for the lump that they found even if it doesn't turn out to be malignant. Still skeered. Also shocked that I will have to be cut into no matter what. But a little reassured by their reassurances that the lump is very small and I will be fine if it does turn out to be cancer.

Monday, June 30, 2014: The radiologist calls. "I was right," she says in the tone Gregory House, MD used when he successfully diagnosed rare brain-eating fungi. "It's a breast cancer." In addition to being a bit annoyed by her tone, I am struck by the phrase "a breast cancer." It seems weird. Is a cancer different from cancer? Not sure.

The first text message after was to my sisters.

Wednesday, July 2, 2014: MRI scheduled, which is standard procedure, to see if they can find out if "the cancer"is just one tumor or if some of the fibrocystic lumps they found are really cancer too. I am slid (slidden?) into a loud tube with two holes in it, one for each breast. Face planted down into massage table-like donut. I ask for classical music to keep me calm during the 20-minute test and Dum Dum Dum DUM! Beethoven's Fifth booms in my ears. I wish I'd asked for smooth jazz instead but it's too late now.

Thursday, July 10, 2014: My neighbor happens to work for one of the most highly-thought of general surgeons in Washington, and is also his sister-in-law, so she has gotten me into his schedule for a consult as soon as possible after the holiday weekend. Together we decide that a lumpectomy is probably a good option for me. He explains to me that he will also need to biopsy the lymph nodes under my arm the day before the lumpectomy to see if the cancer has spread. This involves shooting me up with dye too.  On the day of the lumpectomy I will first undergo a needle localizing procedure, called "needle loc" for short, in which he would basically put a wire around the tumor's margins to help him figure out where to start cutting and to make sure, I think, that he works on the right side, not the left.

Friday, July 11, 2014: The surgeon's office calls. They didn't know that I was scheduled for a second-look ultrasound on the left side because the MRI showed some lumps that were most likely benign but that needed a, guess what, second look anyway. Do I want to wait on my lumpectomy in case I have cancer in both breasts after all? I decide to wait. (I will later wish I hadn't because the ultrasound couldn't find any cancer on the right side.)