I’m having trouble sleeping. Jen is in a deep slumber, snoring with gusto. Tonight, the second night after her first chemotherapy session, I wouldn’t have it any other way. She may be mortified to read about her noisy sleep session. But she’s been urging me to write, and to write honestly. So here we are. Continue reading “On Writing”
After one chemotherapy session, I can already tell that writing might be a little harder for me. My brain feels like it’s wrapped up in about six inches of wool. Whether that’s an effect of the actual drugs, or some kind of psychosomatic effect, or stress, I don’t know. After any kind of conversation that requires decision making or recall, I feel like a nap. I called my mom today to wish her a happy birthday and completely forgot to even mention her birthday until halfway through the conversation.
It’s strange, though. Otherwise, I feel vaguely under the weather, but not horrible. I know I felt worse on the worst days of my three pregnancies. It’s still early, I realize, and new side effects can crop up at any time. For right now, though, for today, I can say that I’m okay. And right now is all that matters.
When I walked into the chemotherapy room yesterday, I was surprised by the quiet and relative calm. I felt almost like I had wandered into a bizzaro-world airport waiting room. My favorite blogger Xeni’s analogy for the cancer experience is to traveling, and that didn’t seem more true than yesterday. The gentleman in the chair next to me struck up a conversation. He had been there since early in the morning and had seen many people come and go, and he told me how surprised he was to note that only four men had been in there, compared to twenty or so women. There were women not much older than me.
It seems like it took a lot of time for things to start happening. When I entered, I was told to sit down in a chair right inside the door. They needed to access my port to draw blood. I briefly felt woozy. Since my biopsy, my legs go a little wiggly at the mention of lidocaine, which they needed to apply before inserting the needle. I felt ridiculous, and I had one of those looking-down-on-my body moments that I seem to get these days.
Afterward, I was led to a chair in the middle of the room. I felt the need to occupy myself right away and pulled out my kindle. I felt restless. Just as I do when I travel, I couldn’t decide if I wanted to read or attempt to make the time pass by sleeping. Luckily, the decision was made for me. During the first portion of the session, I was told to munch on ice chips to ward away the mouth sores that were a frequent side effect of the drug.
While I munched, I chitchatted with my nurse. I realized that I’m going to be spending a lot of time with these people. They’re going to become friends, of a sort. We talked about our kids, like two people sitting together during an interminable voyage. I think I’m going to tire of ice chips very soon.
I still marvel at the support and love of my friends.
A friend of mine, Lauren, sings at a bar once a month, and my other friend Mitchell and I often go to her gigs to cheer her on. We went last Thursday night, the first time in quite a while, and I was so happy to be around people and with a friend who understood that I didn’t necessarily want to talk about the cancer, but was more than happy to listen to me talk.
Another college friend, Heather, sent along a necklace with a pretty charm, and I’ve decided to wear it every single day until my treatment is over.
I think I finally feel at peace with this process. I’m still afraid, and I’m not looking forward to treatment, but I know now that whatever it throws at me, I can handle.
Part of this new inner calm comes from my support group. The first ever meeting of the first ever breast cancer support group at Kaiser was held on Monday. (They host events for the American Cancer Society, but this effort seemed internal.) I didn’t even know how to begin looking for one until I spotted a notice in Dr. Yee’s office. I didn’t know what to expect, and wasn’t sure I was going to go, but I am so glad I went. I didn’t know how much I needed a support group until now.
There were fewer than ten of us in the room, more hospital staff and volunteers than patients. One of them was a nurse; another a social worker. There were a few long-time survivors in attendance, but only two other recently treated women.
I truly hope to see more of these group sessions. I’m afraid of seeing the group flounder or end from lack of interest. I think Kaiser is offering an invaluable service. I hope I can get the word out and get more people to go… and not just patients, but also family members of patients. Family are often even more confused than the patients themselves, I imagine.
I learned a lot during the meeting. I think the most important thing I took away is that this process will be yucky and uncomfortable, and some days will be hard, but I know now that I can still live my life. I’d heard from friends before that their loved ones were still able to go to their jobs and work out while getting treatment, and the people in front of me were saying the same. I heard many stories, and came away feeling upbeat.
One of the nurses in attendance said she’d stop by during my treatment tomorrow. Almost everyone in the room gave me a phone number. I know that at any moment, I’ll have someone to turn to for advice, and that’s such a great comfort.
The main speaker at this particular meeting was the aforementioned social worker, and I was reminded of my late friend Ryan, who was also a social worker at Kaiser. Yesterday happened to be the anniversary of his passing. I thought about some of the advice he may have had for me… delivered with wry humor, of course. Ryan was a good friend, and I watch people around me miss him everyday. Chemo isn’t perfect, but it’ll help me live longer, and living longer is better than to have people have to miss me.
I also thought of the scary things I might face in the next few weeks. I know it’s the best medical science can do today. But I also know that someday, there will be a better way.
Yesterday was my port placement procedure. I was at the hospital from 8 am until 1 pm, but much of that time was spent waiting. The procedure itself was very simple. It lasted forty minutes, at the most. I barely remember it… though that may have been the anesthesia.
It was so simple that I thought, at the very end, “Is that it?” After it was over, I was wheeled back into the room, impatient to leave, but was told that I needed to wait several hours so that they could watch for bleeding.
When I was sent home, I was told to sleep partially elevated for the night, and that all the usual disclaimers about aspirin and showering applied. I settled myself onto the couch, thinking that the whole thing seemed pretty anticlimactic. Until I stood up. It HURT. The pain came on so fast, and was so ferocious, that I found myself calling my oncologist to ask for pain medication.
I had to remind myself that it was, technically, surgery, and that, naturally, it hurt after.
One thing I’m learning is to not ignore my body. Many of us have trouble letting go and heeding signals to rest or eat well or take care of ourselves. I end up paying the price big time if I’m not careful, especially now.
My first chemotherapy treatment is tomorrow. I swing wildly back and forth between bright-eyed optimism and abject terror. Even today, at my appointment with the pharmacist, the sheer volume of the information given to me was overwhelming, inducing embarrassing tears.
But right now, I am relaxed, again. Eager to just get it over with, again.
I’m so glad I had Ryan with me today. I needed him more than ever, and he was amazing. As the nurse spoke to me, he took pages of notes and asked questions, and while I wish he didn’t have to take charge, I’m glad he is.
After the appointment, we met Ryan’s coworkers for an appreciation luncheon, and I had yet more sushi.
It was perfect timing, as the sushi ban starts tomorrow. For tonight, Ryan’s squeezing in my other food vice: bloody as hell steak.
Yesterday, we celebrated the first communion of our youngest, Alex.
Three months ago, as we were preparing, I felt very different than I felt yesterday. Three months ago, I felt peace, and a sense of accomplishment, and like nothing could go wrong. I still mostly felt those things yesterday, but I also felt like I was losing my mind. Somehow, the part of my brain where I stash timetables and lists of things fell out, resulting in both boys wearing the wrong footwear. Zac served as altar boy yesterday, and I realized much too late that his alm, the alm that was much too long when I ordered it in December, was now too short. I was emotional, and flailing around, and couldn’t get it together. I needed yesterday to be, if not perfect, at least sane.
Ryan and I decided to raise our kids in the church. We want them to have spirituality in their lives, at least until they’re old enough to reject it or find their own way. It hasn’t always been easy for me to defend my choice. I have often felt, as a woman, that I have, in fact, been making the wrong choice, but we made a commitment. I fully intended to carry it out.
Standing there, yesterday, in the church, with the people I see every week, watching Alex take the wine, I felt like I’d done a good thing. I felt the sense of accomplishment that I’d hoped to.
I also wondered if it was for nothing.
I need answers. I need to know if this is part of a plan.
I was randomized into a study group today. I will be in the group that does not receive trastuzumab. I will be getting four rounds of doxorubicin and cyclophosphamide, once every two weeks, and paclitaxel, every week for twelve weeks.
I’ve been reading about the possible side effects for all of those, and about immunity, and I wonder if the idea of chemotherapy makes any sense at all. I’ve read stories of people who get horribly sick from the chemo. People accept that this way is the only way, but what if it isn’t?
I’ve been reading about alternative therapies. None of them look promising. Conventional medical wisdom is not always the best, but I’m going down that path, and I think it’s the right thing, but what if I’m wrong? I hope that in trusting my doctors, I’m not taking a gamble with my life.
No matter which treatment we choose, we’re surrendering control. That’s the hardest part.
On Thursday, in the midst of dinner preparations, I sent Ryan to the store, and he brought along the boys. He took the outing as an opportunity to brief them on the latest and to explain how things are going to go for the next few months.
My middle child, Zac, surprises me every single day. He is brilliant, and sometimes I don’t even understand how smart he is. He is bright; he has a keen scientific mind, but beside that, he is such an astute observer of people and situations that he understands things before I do. I think all parents think that of their children, but even adults with no kids comment on his curiosity and his ability to pick up on things.
With that said, I guess it shouldn’t have been surprising that Zac not only knew why things at home were now pretty weird, despite our efforts to keep the weirdness away from him, but he knew exactly what cancer is. He explained everything perfectly; how cancer is “bad” cells, and how they multiply, and how doctors use drugs to stop the cells from multiplying.
He knew all of this. But we don’t know how he knew it. We didn’t know how much information to give him, so we gave him the basics in the very beginning, but there was no way he could have pieced together such a complete understanding with the information we gave him. Even more strange was his reluctance to talk any more about it.
“Zac, how do you know that?”, I asked.
“I just knew”.
“Did we tell you?”
I realized his teachers knew what was happening. “Miss Rose”, I asked.
“It’s a secret.”
“That’s going to stay locked up in my head.”
And I believe him. He’s never going to tell us. He can keep secrets like nobody’s business. Somehow, he felt the urge to find out things on his own, and he did, and I’m proud. What he found might have been scary for him, but I like to think it may have comforted him as well. I think I’ve learned not to shelter him.
Our friend Burt is involved with a local Buddhist temple that holds weekly Zazen mediation sessions. He invited Ryan and I.
I admit, I had the same preconceptions about meditation as most people. I didn’t know how much focus and concentration is required.
I noticed that the men leading the session were not guys off the street. These were leaders in the Buddhist temple, and they had brought along incense and other items from the temple. This, I realized, was more than a fun diversion. This was spiritual. As the leader explained the process, I knew that this was something I truly needed.
We were welcomed into the dojo, and the leader explained that in order to achieve the right frame of mind, I might want to start by simply counting my breaths. He then showed us the proper posture. We all sat cross-legged, but with our backs straight, and our shoulders up. It took so much effort to hold that posture for the first half hour of the session. Then, after a group walk around the room, we sat for another twenty minutes.
I knew nothing about meditation. I wasn’t supposed to clear my mind; my mind was being fully occupied with the task at hand. Thoughts of shopping or food or trivia simply had no room in my head. Every ounce of my brain was engaged in counting my breaths and maintaining my position.
I had never done anything like this before. It felt wonderful. The simple act of breathing became critical. I had never been so tuned into my own body before.
I’ve decided to go as often as I can. I think today might have been life-changing.
Listen. If you’re reading this, I love you. I care about you, deeply.
You’re doing so much for me, whether you know it or not. You’ve written me, you’ve sent things, you’ve given me priceless advice, you’ve liked my Instagram photos. You’ve been my friend.
I realized something yesterday, in a session with Dr. Hayakawa. I think that maybe I’m having a little trouble accepting all of this love gracefully. You mean so much to me, and I don’t know if you can feel that right now. And I want to show you all right now that I appreciate you, and I can’t. All I can do, right now, is to send handwritten notes or express it to you if I see you in person. And I can only hope it’s adequate.
But the doctor told me that to try to make it up to you now would be robbing you of the gift of grace; of giving purely from the desire to help. It had never occurred to me, but he’s so right. So whatever it is that you’ve done for me, thank you. I hope that one day I can help you.
I know you may not know what to say to me. You don’t have to talk about it, you know. I understand. If I were you, I’m not sure what I would say to you. Frankly, I talk about cancer way more than I want to already. If you don’t want to, that’s fine by me. We can talk about anything you want. I want to hear about you. I want to hear about your kids or your job or whatever is on your mind. No matter what’s going on with me, we’re still friends and I don’t want that to change. I’m not supposed to drink or really do anything fun during this upcoming phase of my treatment, but we can still hang out.
I also want you to know this: I hope nothing like this ever happens to you. I know I haven’t even come to the hard part yet, and already, I know it’s painful and nasty and sad and lonely. I’m sharing with you here just in case it does happen to you, or someone else you love. If I can help one person, even a stranger, through this, it’ll be worth it.
I’m glad you’re reading this. You’re helping me to cope; to express what’s in my mind and heart, and I am grateful for that. So thank you.
I hope at the end of this, I am a nicer person. I want to have some kind of wisdom I didn’t have before, or some kind of strength that wasn’t there. I want something good to come from this.
I hope that I continue to have the time and energy to write. I will, as often as I can. Thanks for everything.
And, thanks to Ryan, more sushi today! Chirashi take out from Sushi Spot in Aiea.
Yesterday was full, thanks to more last-minute tests. Dr. Nguyen wants me to be in a group for my drug trial by the end of the week, which required that I get an EKG and more blood work. Scheduled long before that, though, was the fitting for my prosthesis back at Nordstrom.
I couldn’t help but laugh when I saw it. People make jokes about prosthetic limbs a lot, and I didn’t find them funny until now. It’s an icebreaker, for sure.
Someday, somebody’s going to ask me about my surgery, and I’m just going to pull it out and show it to them, and I’m going to laugh.
From the fitting, I went to Kaiser to get my EKG, which was a Marx Brothers routine of its very own. I was greeted by the nurse, Esme, who was full of energy and fun and talked nonstop while she took my blood pressure. She talked so fast, in fact, that I didn’t catch on when she told me she was going to stick around to watch the procedure because she wanted to learn to be a technician herself.
She started to explain what an EKG is and forgot what she was saying, and then remembered she had to find the technician, Nathan, who seemed to be missing.
Nathan was eventually found, and he arrived, and didn’t look at all like a medical technician. He was quite young, and he looked a little like he could be Esme’s grandson. Esme was confused my the multitude of wires and leads, and asked a thousand questions as she hooked me up under Nathan’s supervision. They made an odd couple, with Esme’s questions, and Nathan’s answers, which seemed to confuse Esme even more, and their banter, and the way they moved around each other.
I got a treat after dinner. Ryan has been looking for opportunities to feed me sushi whenever he can in the time we have before I start chemo. We’ll take any opportunity, but since we have to feed the kids, our opportunities are limited to after bedtime, and there are not many places open that late.
Fortunately, we remembered the excellent sushi bar at the Pearl City Zippy’s, and we got in just in time.
Despite my love of sushi, I am still a novice when it comes to sitting at the bar, in front of the chef, and still feel intimidated, but Yoshi-san, the sushi chef, was in a great mood. Ryan even scored extra pieces of sushi. We left full and happy.
I met with my oncologist for the second time today. I thought I had a handle on the information I’d gotten on my last visit. But all that information, coupled with what I learned today, just led to more questions. One huge ream of paper seems to only answer a few of the questions I still have, and the thousands of words on them are still organizing themselves into facts in my head.
The gist: chemotherapy begins next Thursday, the 26th. Before then, I need an EKG and (more) assorted blood tests, and I need to be fitted with a port, under my skin. Tomorrow, I have a fitting for my prosthesis. Next Tuesday, I have a meeting with the pharmacist in charge of the drugs I’ll be taking. In the next ten days, I’ll be constantly on the move. And somehow, I feel like I have lots more to do here at home before then. Everything feels unsettled. I feel a need to finalize things. Make things right. Make somethingright. But what? What is left to do? I feel disorganized. Adrift.
In addition to my chemotherapy regimen, I will be participating in a clinical trial. My cancer is what is known as HER2-low. For years, trastuzumab has been used to treat HER2 positive patients. The aim of the study is to test the effectiveness of the drug on HER2-low patients. I need the EKG because of this study. There is a slight risk that it could damage my heart. Dr. Nguyen also illustrated my treatment schedule for me in detail, but it was so complicated that I don’t think I fully understood it.
I suspect Ryan more clearly understood everything we were told today. The stacks of paper, the calendar the doctor drew on the exam table. Last week, I became obsessed with the idea of the chemo making me dumb, and I think I’m already there. All these facts; all of the things I still don’t know; it’s squeezing out all of the space usually reserved for words and stuff I used to know.
Ryan, between the two of us, has been the one who’s done his research. He’s organized, prepared. He’s the one who will remind me of the things I need to do this week, I’m afraid. I guess I’ve always needed that from him. Now I’m asking him to be the strong one, too.
I didn’t fully understand before today how vulnerable I’ll be, immunity-wise. I’ll have to go to the hospital if I develop a fever over 100.5. I won’t be able to travel to Comic-Con this summer after all, regardless of how I feel. My doctor feels that at that stage in my treatment, the risk of infection is too great. Ryan expressed the desire to put me in a bubble, and I don’t think that’s so unreasonable.
I will also have to forgo sushi and rare meat and trips to the beach. I may experience nausea. I’ll probably feel weak for a day or two after each treatment. I may not be able to taste food, or have much of an appetite.
This is all temporary. I know this. But It’s just so hard to imagine not being able to revel in the things that are such a huge part of my life.
One of my fantasies is to go to culinary school. Food has been one of my loves, for as long as I can remember. Ryan and I have always talked about it, and now we’re determined. I will go when all of this is finally behind us. For right now, that next stage feels impossibly far away. So It’ll be one of the things I’ll hold onto to get me through.
Last night Ryan and I walked almost four miles. It’s the longest walk I’ve been on since the surgery; maybe even longer. We didn’t go our usual route. On this trip, we took a section of road that has no sidewalk and runs alongside the backyards of homes in a residential area. The terrain is somewhat uneven. It felt more like a hike than a walk. Ryan and I hiked all the time, before we had kids. I forgot how much I liked it. It was no Diamond Head or Manoa Falls, but it felt good; and it was long enough to make me feel accomplished.
I’ve been guilty of eating my feelings lately. I haven’t had a whole lot of time to walk recently, either, between appointments and various other things. The walk felt good. I don’t think it’s cancelled out all the extra calories, but it felt good. It seemed like the first time we’d been alone together and not talked about cancer in a while.
A friend who had a double mastectomy told me that after her surgery, she started taking probiotic enzymes. I started taking them too, before my surgery, and I don’t know exactly how much they’ve helped, our how they help, but I feel they might have helped in some way that I guess I don’t fully understand. I think I’ve healed faster than if I hadn’t taken them. At least, I have some weird sense of well-being that might be in my head. I wasn’t even aware that probiotic enzymes came in tablet form. I didn’t know anything about them until the conversation with my friend. I think I’m a believer.