round three

I feel peaceful today. The anxiety has calmed somewhat. I feel grateful for days like this, when the serenity prayer wedges itself into part of my brain and sticks there for a little while.

Yesterday, during treatment, I confessed my anxiety to a nurse, who spoke with Dr, Nguyen, who let them give me Ativan, an anti-anxiety medication. It really helped.

Dr. Nguyen and I have had conversations about this anxiety and he’s recommended several medications that he thinks might help, but only my psychiatrist. Dr. Hayakawa, can prescribe them. I’ve been playing phone tag with Dr. Hayakawa for a few days and now he’s on vacation. I learned today, though, that my regular physician, Dr. Hata, can prescribe something.

I don’t want more medication. I want to conquer this with prayer or yoga or meditation. I’m still trying all of those things, and I feel healthier, but I just can’t quiet the voices whispering “what if”?

This anxiety has had a major plus side, in that it’s driven me to get more done than normal. I’ve been on a mission to declutter and decrud the house. Now I fear the new medication will remove my drive. It might quiet some of the voices, but I think I might need a few of them. I know a new drug isn’t necessarily the answer. I want to fight this cancer with everything I have, though, unencumbered by what if’s and thoughts of things I can’t change.

I’m not scared of this disease. I’m afraid of the future. I realize now that I need Ryan in my life for the rest of my days, and this cancer has made it clear to me that anybody can lose anyone they love at any time. What would I do if I lost him? I literally don’t know how I’d survive. He’s my soulmate and we’re partners in every way. This cancer has redefined things in our relationship somewhat, and everyday, I regret that.

I have found a few things that have centered me these days. I’ve found sitting on my bed with my iPod makes me calm for a while. It sounds so simple, and I know I could be using my time more productively, but I’ve always needed music around me. Music has helped boost me so many times.

I hope, somehow, I can just this kind of inner calm every day.

fearful

I’ve been very anxious this past week. I’ve been too nervous to write; I have had not much of an appetite, and not much desire to do much of anything but be anxious.

I can’t even tell you what I’m anxious about. I’m worried about my kids. I’m worried about home repairs and housework; about bottled water. I’m looking for reasons for it, and I can’t find any. It doesn’t seem to be a side effect of the chemo. I just know that recently, I’ve spent every minute being freaked out about something. It’s unhealthy to worry this much, I’m sure, but I don’t know how to stop.

I woke up today feeling somewhat peaceful. It was such a relief. Last night the tension was painful. I didn’t think I’d ever feel normal or happy again, but today, I’m calm. I don’t know for how long, and I’m scared. I don’t know how I’ll cope if it comes back. I think the peace might have come from a middle of the night cleaning rampage. I hope that that’s not what it takes.

I do think I’ve been handling baldness better than I anticipated, though. I’ve only made a few trips out, and I’ve gotten a few curious looks, but also some knowing nods and even encouraging words.

I’m enjoying catching up with this blog from Bobby Lambrix, a newcomer to the islands. He wrote a thoughtful entry about health and mentioned my blog, and I think you’ll find his writings useful.

hair today

I had Ryan shave my head last night.

It might have been the bravest I’ve ever been, or the most foolish. I’m not sorry today, so I guess that seats me in the former category. It had been falling out in clumps and looking more and more thin and wiry every day, and I knew I had to make a decision.

It’s amazing how much hair a person has. I have (had?) thick hair and didn’t appreciate until now what that really meant.

I lost a lot of hair. It just seemed to keep coming, more and more every day. Every day, I hoped that somehow it would stop, because there’s just no way a person can lose that much hair, but by yesterday, there was almost no hair left on my head.

Yesterday was a low point for me, in a lot of ways, and waking up to find such huge patches missing didn’t improve my outlook. So last night, I told my husband to take it off. I was expecting tears on my part, but none would come. I was ready to let it go.

There’s something wonderful about knowing exactly what you’re doing and not being afraid. It’s strange, how natural a decision it was. When it was over, I ran my hand over my head, and realized that I was touching a part of my body I hadn’t really touched before.

a request

After my first treatment, it was the following Tuesday before I could get out of bed or do much of anything. Today is Tuesday, and I’m not quite where I was last time. I wonder if there really is a cycle; a way to predict on what days I’ll feel something like myself. If there is, I haven’t found it yet. I also haven’t found a way to manage the fatigue yet; the inability to do anything except sit and hurt. The fatigue is truly the worst of the side effects.

I want so badly to get up and do things. I wonder if the fatigue would be so bad if I could set goals for myself. One load of laundry. One chapter in a book.

Reading. I haven’t had the focus needed to finish a book in a very long time. I used to read constantly. Since my diagnosis, I find that I just don’t have the attention span to read. Back in February, before all of this started, I was reading a book by MFK Fisher, the food writer. MFK was the first food writer, and every ounce of passion she had for cooking and eating pours from every word she wrote. It’s a rare thing indeed when I can’t make it through a book, but I know I’ve probably read the last of Mary Frances for a while.

I’ve been trying to read “Howard’s End” by E.M. Forster during my clinic visits, but so far, it hasn’t grabbed me. I consider it a sort of personal failure if I can’t make it through a book, and I don’t want to set it aside, but I think it’s time to look for something else. Life is too short to read boring books, right? So I’m going to find something else. Any suggestions?

some tips

I’ve only been through two chemo treatments so far, so I’m not exactly a veteran, but I’ve learned a couple of things. I know I’m likely to learn a lot more. But I want to share the few tips I’ve picked up.

It’s cold in the chemo room. They need to really crank up the AC to protect the electronic stuff in there, so bring a coat and socks. You might even want to consider a blanket from home. They have an oven-like contraption in there that holds loads of nice, toasty blankets, but they cool off eventually and your own blanket can really help you stay comfy and feel a little like you’re at home.
When she’s about to start your drip, the nurse will flush your line out first with some saline and heparin. Strangely, you can taste them in your mouth as you’re being flushed. You can combat this with some gum or hard candy. Bring some with you.
It’s really worth investing in a small whiteboard to put on your fridge or an app for your smartphone to help you keep up with your drugs and appointments. Ryan has an app called Remember the Milk to help him with my medications. Also, make a checklist of things you want to bring with you to chemo. Coats, candy, snacks, your book or Kindle, puzzle books.
I mentioned snacks. Having something healthy and small in your stomach might help you fight queasiness and keep your energy level up. Don’t go to your appointment on an empty stomach but do also consider bringing something to munch on.

I have unlimited support, here at home. Ryan or my mother-in-law do everything for me. They drive the kids wherever they need to go; they cook all the meals; they clean. And it’s wonderful.

I miss the little things. I miss taking my kids to appointments. My kids have to see the dentist this month. After every dentist appointment, I take them to the mall to get snacks if they’ve had good checkups. I won’t be able to do that this month, and I regret that. I miss cooking a lot. I am incredibly grateful for the support, but I miss the things that made me a mom.

I’m going to cook like a fiend when chemo is over. My family are going to be the best-fed family on the block. I’m going to raid all of my cookbooks for new recipes. I can’t wait. Only 16 weeks.

fake

On the day my new boob came in the mail, my hair started falling out.

My prosthesis and my new bras arrived yesterday. Up until now, I had been using the padding from my post-surgical camisole tucked into the shelf bra of my regular Costco brand camisoles, which worked most of the time, but not well. The pad often slipped out of place at awkward moments, causing me to constantly have to tug on my shirt. It was not an elegant solution, but it was all I had.

I tried the prosthesis on with one of my new bras after dinner, and immediately, I felt better. My posture improved instantly. Suddenly, the fatigue and undefinable discomfort I had had since the surgery melted away. The bras fit wonderfully.

I realized during my fitting that in my whole life, I had never had a bra that fit properly. I’d been sized but was never shown how to put one on or how to know if one fit right.

I laughed to see my new breast, there in a box. I was thinking about how to tweet it. I was considering all the jokes I could make when I ran my hand through my hair and noticed more than a few strands clinging to my fingers.

I knew it was going to happen, and I know it’s temporary, but I was thinking about the stories I’d heard from other survivors who said they didn’t really lose much hair. I was hoping I might be spared the hair loss to a degree. Today, my hair is still mostly all there, but I know by the weekend it will be noticeably thinner. Luckily, my mom sent me a bunch of hats and a friend sent me a spare wig, so I’m covered, no pun intended.

I’m not looking forward to this stage of my recovery, but Ryan is so excited to see my bald head, it’s a little frightening.

I go in for my second dose of chemo tomorrow. Before every session, I will have to see Dr. Nguyen for a physical exam and a blood count, as I did yesterday. At the appointment, he explained that the pains that sent me to the emergency room on Friday were most likely a side effect of the Neupagen injections. I wish I’d known that before I’d gone in. I knew to expect some discomfort, but I was expecting something entirely different. The pain isn’t skeletal, as I’d imagined, but more muscular.

The good news is that now I know to expect it.

Pele

Yesterday I went to the emergency room. I feel so silly now. But I’m okay.

I might have been retaining a lot of water. Or something. I’m still not sure what it was. I still feel it somewhat today, but it won’t interrupt my sleep as it did last night.

I guess the best way to describe it is how I described it in an email followup to Dr. Nguyen today. It felt like full-body hiccups. Some kind of spasm starting near my diaphragm and radiating to my lower back and the back of my neck. During the worst spells, I could feel a tiny squishsquishsquish sound in my ears. I guess I feared I was suffering from a massive blood clot or some exotic side effect. I know now that it wasn’t pleasant, but it was hardly life-threatening.

The attending physician in the ER, a Dr. Zimmerman, was extraordinarily caring and polite and when he came in to tell me that a result of one of the tests they performed was slightly abnormal, I felt like I was in good hands. He said that I had an elevated count of some enzyme that indicates a higher risk from a blood clot, but later explained that the elevated levels could have been due to the mastectomy or the port procedure, or even an everyday bump or bruise.

Like I said, I feel ridiculous and would not even mention it were it not for the fact that I learned that the use of my port is pretty painless and easy, simplifying blood tests and the CT scan. When I was sent home, they slapped a band aid on it, and I could even shower yesterday evening.

My port is the thing that easily causes me the most fear because it involves veins and my heart and in my panic yesterday I even imagined that some sort of horrible complication was causing the discomfort and would kill me if I weren’t careful. But yesterday, it was my friend.

I want to tell you a story.

I spent my twenty-first birthday on an airplane. It was the day I came here, to Hawaii. I had had a low key celebration with my family and friends the day before I left but wanted to mark not only my birthday, but my new life, in this place I wanted to settle.

Since I was young, I had a picture in my head of how I wanted to celebrate, though, and hoped somehow, I could make it happen eventually. I didn’t know anybody in Hawaii; I came here completely alone and hoped to make friends here soon. In my mind, I pictured a party, to be held at some later date, surrounded by friends around a giant coconut cake and some champagne.

I was asked by a friend how I’d celebrated my birthday and I told her the whole story, right down to the cake I wanted.

One night, just before I met Ryan, that friend, in the company of our other mutual friends, drove me out to where the lava meets the ocean, near the Holei Sea Arch, at Volcanoes National Park, with a coconut cake and a bottle of bubbly. It was even better than I had imagined, and I think of that night even now.

I’m telling you this because when this is over, I want to do that again. I want to drink with Pele again. I think she’s been pretty kind to me, so I want to say thanks. It’s good to have goals, right?

may day

The hardest part of writing post-chemo is clearing my head.

Ryan told me the other day that recently, when I’m tired, I talk like Yoda. That is, I often cannot figure out what order the words go in, and sometimes even the correct number of words to use. So many thoughts and parts of thoughts are swimming around in my head these days that I’m flailing around, grasping at them and putting them together, hoping they make some kind of sense, and sometimes they don’t.

I feel pretty good today. My energy level is higher than it’s been in four days or so. I’m hungry again, too. It’s been five days since my first treatment, and while I can’t say that this experience has been fun, I’m managing. At my support group, one of the ladies said “you’ll get through it and you won’t remember it afterwards. It’s like labor”. I didn’t really believe it then, but I know now this could be so much worse.

I’m getting three different drugs to fight the nausea. So far, they’re a miracle. At any given time, I’m never really ravenously hungry, and there are times when I’d rather not eat anything, but I feel my appetite coming back a little at a time. I won’t be jonesing for a burger anytime soon, though. I’m managing on mostly yogurt and applesauce for now. Heavy and spicy foods are forbidden for me, but luckily, I don’t really want them.

I also need a daily injection. Ryan is giving me daily doses of a drug called Nupagen, which helps increase white blood cell counts. My oncologist wants me to have treatments every two weeks instead of the standard three. The Nupagen raises the blood cell counts more quickly into an acceptable range so I can get treatments more often. Injections are the least favorite part of my day. The needles are tiny, and I don’t even feel them. Still, it’s so hard to sit still get a shot.

Sometimes, I overestimate the amount of energy I have, and start to do something, and find out that I’m too weak to finish. That might be the hardest adjustment I’ve had to make, so far. Ryan and I have been taking two or three times daily walks around the neighborhood. I start out feeling prepared to go twice around the block, but find I can’t go any further after one go-round.

I think I’m doing well, though. I still have months of treatments ahead of me, but I’m hopeful I can handle them.