Grumpy

(Heavily edited to get rid of some of the whingeing.)

Long time, no blog.

But no apologies either. I am working on not apologizing so much. I’m a serial apologizer and that should be on my headstone, “She apologized. A lot. TOO MUCH.”

Health update: I am in medically induced menopause, thanks to Tamoxifen and who knows what-all. 

For me this means several hot flashes an hour. Which sucks. 

What I really hate is the fatigue. I am tired when I wake up at 6:15 am. No, I am not exercising. Yes, I am drinking too much coffee. 

I need a vacation by myself. I fantasize about a single room, piles of books, tea and coffee and wine. And maybe my beautiful cat Sammy, who died two days ago.

Seriously, sorry for this complaint-heavy post. I will work hard to make my next post happier.

Post Chemo Days

         

If you squint you can see some fuzz on my head.

My chemo officially ended on January 2^nd, so it’s been almost four weeks, and much longer than that since I have posted here. I apologize for the long silence. I think I’ve been depressed.

The side effects have not ended. Obviously I’m still bald, but the nausea just goes on and on.

• Neuropathy: tingling fingers and toes. Still happening.

• Expanders: still hurting.

• Fatigue: I am always tired.

• Nothing tastes right, especially coffee, which tastes bitter instead of strong, or smooth, or heartening.

• For Christmas I got a scorching case of rosacea on my face and I can’t seem to get rid of it. I look like Bill Clinton.

• Hot flashes: I mostly don’t wear my wig because my head gets too hot and the sweat rolls down my face and then I look like Bill Clinton when he looked in the camera and tried to redefine “sexual relations." Just a sweaty, red-faced mess.

I think, I honestly think, that I believed that chemo would end, two weeks (the length of time that I went between infusions) would pass, and I would feel totally normal, except with foobs and no hair. I also thought that I would feel grateful, or peaceful, or serene.

But these post chemo days have been pretty anti-climactic, pretty “now what?” I am not sure how to explain exactly, but unfortunately I have not felt grateful, or serene, or peaceful. Sometimes I have felt relieved.

The truth is that I am still very afraid. I don’t have cancer for now, but it could come back. Metastatic cancer is what I’ve been reading about and thinking about—cancer that spreads into the rest of your body, that can’t be cured, that you just have to manage and treat continuously. I have to figure out a way to live with this fear and come to some kind of peace with the fact that I just don’t know what will happen. And I have to raise a son and be fully engaged with him. And I have to be a librarian and be fully engaged with my job. And I feel obligated to support Andrew and I don’t know how to best help him, now that he is out of the hospital, doing follow-up therapy and taking his medicine.

As for next steps: tomorrow is my last expansion. In a week or so I will start Tamoxifen, which will increase the hot flashes, I’m sure. I will have follow-up exams and blood draws with my oncologist every three months for a year or two, which means my port stays in. Sometime this summer, probably, I will swap my expanders for implants and maybe get some fipples tatooed on what my plastic surgeon gracefully refers to as "the breast mound."

In other news, I am watching Downton Abbey with Andrew on Sunday nights—a longtime ritual for us, one that we have welcomed back into our lives. Jamie is working his way through Harry Potter, with irregular detours into Captain Underpants and Origami Yoda. 

Reminds me of Raymond Carter’s baker and what he had to say about small good things.

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.