This is me now and other news

This is what my wig looks like...kind of like my own hair, except not totally even on both sides. I look tired and not so happy. Weird, because I had a great Thanksgiving weekend with my family down in Springfield, MO.

In chemo news: a week and a half ago I switched from Adriamycin and Cytoxan to Taxol, which for me means much less nausea (yay! I don't feel sick all of the time!) and a little more energy. Now that the nausea has receded a bit, however, my expanders have asserted themselves and I'm really noticing how uncomfortable I am, pretty much all the time. I was a stomach sleeper and I am now a back sleeper. Once my chemo is over, I can start thinking more seriously about reconstruction surgery, but I am already fantasizing about sleeping on my stomach. I still feel so...mutilated. I think reconstruction will help with that. I know not every woman chooses to have reconstruction, and now that I've spent so much time in and around hospitals, I know why, but I'm pretty sure I'm going to have full reconstructive surgery. I'll never have real breasts again, but I want to feel more comfortable in my body than I do now.

In dread-despair news: I think the Zoloft is working a bit. I have started re-reading Trixie Belden mysteries from my childhood; they are so uncomplicated and solvable, unlike cancer. I have also forced myself to continue to reach out to people, even just for a few moments, to chat, to get out of myself. It is so easy to walk around with that cloud hanging over me. Sometimes I just need to run out from under it. Sometimes, once I do, it even disappears.

In Andrew news: he is out of the hospital! He is staying with his amazing sister right here in Columbia for now, while he continues his therapy on an outpatient basis. Since I'm in chemo and pretty compromised and his sister is a live wire of energy, it seemed best and safest for him to live with someone who can really take care of him while he focuses on himself. We visit back and forth several times a week and talk every day, including FaceTiming so Andrew can read Jamie a bedtime story (when Jamie allows it).

In Jamie news: he seems to be doing really well. As the son of two English majors, Jamie is well able to articulate many things, including his feelings, but only when he decides it's time. For example, he told me that I picked a really bad time to tell him I had cancer--"I was just starting first grade! That was a really bad time, Mommy"--but he seems to have forgiven me for having cancer. He is so affectionate and snuggly. "Oh, I love you, Mommy," are usually his last words to me every night. Oh, I love you, Jamie.

Not that kind of cloud

Another pic-less post. I promise to do better with the visual aids in future.

So lately I've been struggling with my mood. Like, a lot. I oscillate between terror and depression about my cancer coming back, Andrew, my financial situation, and Jamie's well-being. It's like a cloud falls across my emotional landscape and I can't get out from under it. Then there are times when the the cloud blows away and I feel perfectly calm and even joyful. A cup of tea, Jamie's laugh, and especially, a visit from my parents, my sisters, a friend: these things can make me very happy. I try to focus on the importance and the permanence of the love of my family and friends versus the transitory nature of my chemo treatments, for example, and even the nausea that has gotten worse and worse over time. I am learning, painfully, how to adjust my way of thinking to change how I feel and to be satisfied with the results, no matter how short of "happy" they are.

I have also decided that more clutter is better, a significant development for someone who has been addicted to shelter mags for at least ten years. I've decided just to leave stuff out because it's easier to find and it makes the house look lived in. Sometimes, when the dread kicks in, I look at my cluttered little living room and feel a bit better. Sometimes feeling a bit better is all I can manage.

Take last week, for example. A cloud of dread-depression clung to me despite the warmth of my sister Kerri, who did laundry, projects with Jamie, and generally made us at home in our own home, probably caused by the fact I was getting sick. The day she was getting ready to leave, I started to feel feverish and took my temperature. I had a temp of about 99.5 and had begun to shake and shiver when she left. Later that night I called Ellis Fischel's Symptom Evaluation Clinic when it went up one degree and the oncologist on call told me it was okay to take tylenol or ibuprofen, but just once. I felt so lousy that I called my sister-in-law, Kerry, and asked her if Jamie and I could stay the night, then took some tylenol and waited for her to come and pick us up since I didn't feel safe to drive. At that point I was probably at my lowest ebb, mood-wise, and being with Kerry and her husband Andy helped enormously.

By the next morning I woke up feeling great and had Kerry take us home. Around lunchtime my fever came back and I called Kerry again to ask her to come to our house and watch Jamie while I went to Ellis Fischel to be evaluated. I drove myself to the hospital and went into the clinic, where, under observation, I popped a 103 degree fever and found myself booked to stay overnight.During the hours that it took for me to get a hospital bed I found myself obsessively texting my sisters and parents. One sister volunteered to come, but my parents overruled them and said that they would come back--and they had just gone home a few days before after my fourth chemo treatment. I knew Jamie was safe and my folks were on the way; and I hoped I didn't have pneumonia. The cloud of dread-depression got significantly smaller.

Later the cloud got a little bigger, mostly because I was so miserable physically. I wish I could describe how bad that hospital stay was, but on second thought, no. I'll just share one detail: I had a terrible sore throat and the resident doctor ordered me ONE throat lozenge every two hours. They weren't special morphine lozenges or anything. They were basically Sucrets--strong, but only for a few minutes. On second hand, a few more details: I didn't get a hospital gown until about 1 am and I couldn't get tylenol until around 10pm because they weren't sure what I had. Ultimately I was diagnosed with a strain of the flu, one not covered by this year's flu shot (which I got), and told to rest, take tylenol, and drink lots of fluid when I was discharged. I bounced joyfully out of there at 1:00 pm or so the next day. And then I went home and ate about 3 throat drops in a row in a mad act of rebellion. The cloud of dread-depression lifted for awhile.

And it hasn't come back too much since then. One reason: Andrew is out of the hospital.The other: I am halfway through my chemo. Tomorrow is my fifth of eight treatments, so I'll be more than halfway done. And finally: I increased my Zoloft dosage.

Chemo Days

It is surprising to me how much chemo has taken over my life. I thought, when I heard that it would be every other week, that it would probably occupy me on treatment Thursdays and maybe the weekends after, but the reality is more like this:

Thursday--treatment
Friday--Tuesday or Wednesday--treatment side effects

So really, I am spending every other week preparing for, having, recovering from, or managing chemotherapy.

That is an effing lot of time on chemotherapy, especially since Andrew is still in the hospital.

So I guess it is inevitable that sometimes I feel that rather than living my life and just getting chemo here and there I am actually living in a succession of chemo days, really, colored by the following truths:

1) Eating a little protein all the time is very helpful;
2) I have lost and gained the same 9 pounds every cycle;
3) Steroids are probably the reason for the gaining and losing;
4) I have lost my taste for coffee and I really don't care.

Things I do care about:
1) Feeling trapped at home;
2) Making sure Jamie's life is as normal as possible;
3) Asking for help even when I don't want to do it.

Yesterday I called my wonderful sister-in-law and asked her, in a hiccuping, snotty-crying kind of way, if we could just drop in at, oh, dinner time. Not that we would be eating, no. I eat way before dinner time and I would be bringing Jamie's dinner with me, but still. Just dropping in around dinnertime because I felt like crap.

Definitely not something I would have seen myself doing even a month ago.

So of course she said yes and Jamie got to play Portal with his Uncle Andy and Kerry gave me hot chocolate and talked to me until I was calm. And then she drove her car behind mine because mine's "check engine" light came on all of a sudden as I drove out to her house. As I drove I reflected on the necessity of asking for help. Even demanding it. A good thing to have learned during my chemo days.

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.

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.)