Detour

So this post isn't really about cancer at all. Feel free to wait until the next one.

Andrew is in the hospital--he came out for a visit during his fall break and he wasn't doing well, so he checked himself in, brave man. This is the fourth time in less than a year and half that he has had to go through this, and he is in the process of applying for leave from his job from the rest of the semester.

Out of nowhere in spring 2013 he began dealing with anxiety, depression, and other health issues. Note that I am not saying mental health, because I hate that term. His health was suddenly not what it had been, and that continues.

It's pretty bad and it is part of the reason that I moved out here, because I thought that we needed a family network around us. I wasn't doing such a great job of taking care of both Jamie & Andrew, and I was missing a lot of work, even with the help of our dear friends in Washington and great support from my colleagues at Evansdale Library, and then this new job opened up and I was so grateful that I got it and happy to come back closer to home.

All of these are good things, but I just want to say that hiding things like depression and anxiety, which is what I've been doing with respect to Andrew, really does make them seem worse than they are. As soon as I began telling people about what was happening in real life I found that they were very supportive and many knew or had experienced similar things themselves. Bottling things up created a sense of isolation that was greatly ameliorated when I began talking about how Andrew was doing and how he was feeling.

Today he is not doing well and he is not feeling well, but he is safe. And I hope that soon he will be more than safe.

If you know Andrew, you might be surprised to read this about him. because he has typically been a sunny person. But he is going through a hard time right now, so please think good thoughts for him.

I feel like crapola

I am scheduled for 8 dose-dense chemotherapy treatments, meaning that, as my oncologist explained, they are doing a very aggressive schedule of chemo. Every other Thursday from September 25 through January 8 or so I will be passing through the Gates of Hell. Each trip is broken into 3 separate appointments: blood draw in Blood Draw, pep talk with oncologist, Infusion in GoH. Depending on my schedule or theirs it takes about 2 1/2 hours.

All fed up for Chemo #2

The first time I went my symptoms, which turned out to be a first-trimester grade of nausea and dizziness, kicked in about 3 or 4 hours after I got home and were pretty bad for about 48 hours. At one point I fell over, Bridget Jones-style, wrapped in my comforter. I didn't get hurt but when I offered the information to my parents that I had totally lost my balance during my nap they looked at each other and my mom said in a tone of mild amazement, "So THAT'S what the thumping was!" Um yes. That's what the thumping was.(Lest you misunderstand me, my parents have been a source of continual comfort and support throughout this entire experience and I have no doubt that if I had shouted for help, they would have come. As it was, I was a little embarrassed, thumped as quietly as possible, and preferred levering myself to my feet with the help of my cocoon, is all.)

Based on the intensity and sudden onset of my symptoms--do I sound like a dr? no?--I thought maybe doing chemo on an empty stomach was the reason for their ferocity and so I determined to fill up on lunch and treats beforehand, and also to bring treats with me. In case eating before getting very strong medicine seems like an obvious way to head off the pukes, let me just defend myself, I mean briefly explain, that prior to my first chemo I was told  a) to eat normally and I did, I ate breakfast and probably a snack and b) that "food would be provided," and it was, but it wasn't gluten-free, and I have Celiac disease, so I just ate ice cream and chips (I might never eat chips again, or ice cream in those little adorable cups, the thought makes me both want to hurl and weep with regret) and suffered for it.

So this last chemo time, nearly a week ago now since this is Wednesday! (I can't believe I still feel so rotten)I ate a big plate of risotto beforehand and brought lots of treats (pics to come). And when I got home I felt fine. And Friday I felt great! So great I wished I had gone to work...and here we are on Wednesday, when hordes of zombies could attack my library and I'd go free because I have no brains to eat. Brain free, chemo brain, queasy stomach. All of which visited themselves upon me Saturday afternoon or evening. So I was able to stave off my misery for awhile, but not forever. However, I still like not feeling like crap right away, so I'll be using the feed-beforehand strategy again.

Abandon hope all ye who enter here, plus I have a wig

So I went for my chemo teaching session  and IT SUCKED. The only good part was the tour, which featured people doing things like sleeping, chatting, and reading while getting poison poured into their bodies.

Turns out that what I thought would be a helpful explanation of what was going to happen to me on chemo day was more like a "you have been warned" kind of thing, at the end of which, you sign a form saying that you get it, you're agreeing to poison yourself under medical supervision, and you won't sue anybody if it kills you. Ha! See how I did that?

Here is what I found out:

1. Infection is to be avoided at all costs, but live my life as normally as possible
2. My pee will be red for a few days after chemo, but if blood appears in my urine, it will not be difficult to spot and I need to call the doctor right away (not sure which one though)
3. No ibuprofen, no acetaminophen, no NSAIDs of any kind. Nothing that will mask or artificially lower a fever. Back to narcotics if I have any kind of expander-related pain (which I sometimes do, like yesterday after spending an hour on my left side during the echocardiogram, my left foob swelled up and I'm still pretty uncomfortable). Which means if I don't want to be tooling around CoMO high as a kite, I'm either in for the duration or toughing it out. Thankful for my moderately high pain tolerance.
4. No booze. I figured, but still.
5. There is a large handout with the ominous title Chemotherapy and You waiting to be read. And it will probably be waiting for a long time. 
6. Claritin might prevent the bone pain that Neulasta will cause, but you have to take it ahead of time. Ask your oncologist. 
7. Why isn't my Neulasta shot scheduled yet? (I am actually terrified about this. Neulasta boosts your white cell counts and thus your immune system. White blood cells, for those who copied from encyclopedias relied heavily on outside resources to write their biology term papers and thus don't remember what those are, don't live long and the chemo kills them alongside the bad things it's supposed to kill anyway. They die like flies, but also breed like rabbits (if all goes well) under the influence of Neulasta.)
8. Hand sanitizer.
   
   But not the kind with alcohol in it. (or is that shampoo for my new wig? (Image from http://www.wikihow.com/Use-Hand-Sanitizer).
9. But live your life as normally as possible, especially since "you have a little kid, right? I thought I saw that in your notes." Um, yes I do. And he is in a serious nose-picking phase right now. So. 
10. Getting a port put in is minor outpatient surgery. 

This sucker is subcutaenous. They went in through the jugular vein in my neck to put it in, just above my left expander. I heard the whole thing but was too high to care, thank goodness. My sister was disappointed because there is, apparently, a tradition of naming chemo ports that is rendered moot by having them under the skin instead of out where everyone can gawk at them. Image from http://www.angiodynamics.com/products/smart-port-ct.

So that's my overdue report from the Gates of Hell, aka the Ambulatory Infusion Unit, where they ply you with chocolate ice cream, let your parents come with you to chemo, and generally make you as comfortable as possible while administering carefully calibrated amounts of cancer-killing toxins into your system. Side effects may vary. In my case, I started puking about 4 hours after my treatment.

Quite a cliffhanger, huh? More soon. Note I didn't give any details about my wig:

Wigstand decorated by Jamie w/a Sharpie.

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.