Please don’t kiss the cancer patient

please do not kiss the cancer patient

by Amelia

Leah drove herself to chemo – alone – this week. I had to wait for the furnace repair man to come. First let me say that while physically it was an acceptable choice, emotionally it did not feel okay. It should have been an easy, drama-free quickie treatment since it was just Herceptin (the targeted chemo that has no immediate side effects). And it was, except Leah’s blood work showed that she has neutropenia.

What is neutropenia? The short answer is that Leah’s immune system has crashed. The long answer is that chemo kills fast-growing cells like cancer, hair, and bone marrow where the components of blood and the lymphatic system are made. Leah’s white blood cells are currently 1.7 (normal range is 4-11) and her neutrophil number is .6 (normal range is 1.8-8). What this all means is that Leah’s ability to fight infection is seriously compromised. A cold, the flu, a skin infection: even the simplest germ could be life-threatening.

The good news is that these numbers can come back up again, and hopefully will in the next week or two. The bad news is that they can go back down again since she gets the Taxotere and Carboplatin every three weeks until mid-February. This could be a long road. The doctor told Leah to avoid people, especially groups, and to definitely stay away from sick people.

What you need to know is this: Please don’t kiss the cancer patient. Don’t kiss, don’t hug, don’t get close. Even if you think you aren’t sick. Because how do you know you didn’t catch something that’s brewing in you right this second? You will get an annoying cold, but Leah could end up in the ICU.

Here’s what else you need to know if your friend has neutropenia:

  1. Wash your hands. A lot. With soap. It doesn’t need to be antibacterial soap, but make sure you scrub them good.
  2. Cover your mouth when you sneeze or cough. And then wash your hands. If your 3-year-old doesn’t think to cover his/her mouth and tends to spray mucus everywhere, then please leave your 3-year-old at home if you can so all of Wegmans isn’t infected.
  3. Don’t go to work – especially in a restaurant – if you have cold or flu symptoms. If you are the restaurant boss, maybe you ought to think about offering sick time. A novel idea in the service industry. If you do have to go to work, cover your mouth and wash your hands. A lot. If you handle food, wear your damn gloves. They are required for a reason.
  4. Don’t be a close talker. You know who you are. (You’re probably also a mouth kisser. Ew.)
  5. Wear a mask at the doctor’s office if you think you might be contagious.
  6. Oh, and your unvaccinated babies? Please keep them far from Leah. When you make a choice not to vaccinate, you may be taking away someone else’s choice to live. You might think I’m being a germaphobe or judging you, but this is a matter of life or death. Think about it.

And may I add, if you do have the flu, please do not listen to Gwyneth Paltrow. 

 

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Change is good

Cancer is changing me. I tend to move through things quickly, but cancer is a different story. I can’t move through it, it has to move through me. At the same time, I never realized how adaptable I am.  I’ve already adjusted to being bald. It’s not so bad, and do I tend to change my hair style every year or so. So this year will be the No-Doo.

It’s the process of losing things that’s hard for me, not the aftermath. While I’m losing things, I feel the utter sense of having no control and that something is being taken from me. I accept it when it’s done, but I fall apart during the process.

I am more ok with the idea that everything has an apparent expiration date: my breast, my lymph nodes, my hair. They all bit the dust sooner than I would have liked, but I’m ok with it.

Cancer has forced me to re-evaluate so many things and every time I dig a little deeper I find something new. I’m becoming someone who lives for the moment, I just wish cancer wasn’t the reason. I would have rather chosen that that path on my own, but I am grateful for the opportunity to challenge myself.

Life is fragile

Life really is this fragile. I’ve said it, I’ve seen it, I’ve known it, but now I am experiencing it. Sometimes it’s hard to accept that one tiny cell is tearing me apart. Being vocal about it helps. Every emotion I have has a purpose in this, even the negative ones. Now is not the time for silence.

All of our lives intersect somehow, somewhere, all seven billion of us. Even if we don’t know each other, even if we’re on different continents. The same things happen to every single one of us: we’re born, we live, we die. Death truly is the great equalizer.

When Amelia first asked if having cancer made me think about my own mortality, I immediately said no without even thinking. It was a 100% scared and reactive response, a denial of the true worst case scenario. There are things you don’t want to speak out loud or hear, words like metastasis. And words like brain, bone, liver, and lungs: those are the words that make you think of your own mortality. Those are the words I don’t want to hear. Those are the common places HER2 positive breast cancer likes to spread to.

Amelia and I are opposites in many ways. She is incredibly comfortable with death. She’s worked with death on many levels from toddlers to the elderly. I often call her a Guide to Death, because that is exactly what she is. She is the person you want around in medical situations. I am not so comfortable with death, but I’m much more comfortable than I used to be because of Amelia’s incredible perspective.

I can admit now that cancer does make me think about death. I realize that nothing is mine. I possess nothing. Everything I think I own will sooner or later belong to someone else: my house, my clothes, my truck, my banjo, my furniture. Some of these things already belonged to other people who are long since dead. It really is a circle of life and death, and in between we’re just borrowing time. Does it sound like I’m at peace with it? I’m not.

 

Round two

If there is a war, my enemy is side effects. The cancer is here. Who knows what the future holds for it? It might be gone, it might not. It might end up killing me. There are no reassurances so I’d rather focus my energy on lessening the  side effects, taking care of my mind, and taking care of my body.

Yesterday I had a pretty intense reaction to Taxotere during the chemo infusion. Amelia wrote about it right after it happened. At first I thought I was having a back spasm, but then I realized I was having a reaction to the chemo drugs. It felt like the bottom six inches of my spine were under immense pressure and it was going to explode – like that scene in Alien when the alien bursts out of the guy’s stomach.

I’m not so good at showing pain. I sit with it and don’t react too much vocally. Once again, it’s a time when something is really, really wrong and I get very still and silent (unlike when I accidentally hammer my finger and there’s a lot of yelling, pacing and swearing). You would not know anything was seriously wrong. In fact, Amelia didn’t even grasp the gravity of what was happening. So now I get to add another drug to my cocktail: hydrocortisone. Fortunately, the nurses took immediate action and within five minutes I was back into my Benadryl stupor. But goddamn that was some serious pain.

Clearly I can’t assume anything. What happened last round doesn’t equal what will happen this round or the next four rounds so I will hold my breath the next few days and hope for the best. It’s all I can do.

I can now see my mind and body’s reactions to what is happening throughout this process. From You have cancer to You will need a mastectomy to It’s in your lymph nodes to Chemo is not optional to Your hair will fall out to Hello, side effects, my body wants to squat on the floor with my head in my hands and take the duck and cover position in the corner. My mind wants to destroy everything in the room and throw things out the window. It’s 100% pure instinctual reaction. I know that I can’t get on either one of those trains. I need to see them, acknowledge them, and then watch them go by.

Chemo reaction

by Amelia

Leah reacted to the Taxotere today. If there’s one thing we’ve learned so far about chemo, it’s that you can’t get through it without side effects. It is hopeless to hope to avoid them all, so brace yourself for the ride.

Leah was zoned out in a Benadryl fog in her chemo chair (think vinyl nursing home recliner) when the back pain hit. In Leah’s words, it felt like her lower spine was about to explode. A flurry of nurses surrounded her immediately. One took her blood pressure, another yanked the curtains shut, someone temporarily stopped the chemo and increased her fluids, and somebody hooked her up to oxygen. The nurse practitioner was in the room in under two minutes. Two minutes after that Leah got a shot of hydrocortisone, and in two more minutes the pain was almost completely gone. The nurses kept an eye on Leah for a while to make sure she was okay before the offending chemo was started again.

Normally this place is weirdly quiet, the silence only interrupted by an occasional nurse shouting to an elderly hard-of-hearing patient “What are you doing for Thanksgiving this year!” Leah’s reaction is definitely the most interesting thing to happen on the chemo unit so far. No one wants to have a chemo emergency, but if it happens, you want a speedy and excited crowd of medical staff in your cubicle with you tending to your needs. Thanks for the excitement, Leah.

leah with chemo

Hair today…

Only one week of a mohawk, darn it! Last night I had to shave the rest of my head. Too much hair was shedding and I don’t want to leave a DNA trail everywhere I go. When you go from a mohawk to a stubbly head it’s not nearly as fun. It was good to shave it in stages though; it gave me a chance to grieve. I was not a griever or a crier before cancer because I was always looking at the future and thinking about what’s going to happen next. Everyday my hair fell out was like seeing the future, and my future self is hairless.

I don’t just lose the hair on my head, I lose ALL of my hair. Important places that we take for granted like nose hair, ear hair, eyebrows and eyelashes. Nose hairs are filters for dirt, viruses, and bacterias. Ear hairs help you hear. Eyebrows move moisture away from your eyes and eyelashes are a protective barrier for your eyes. I’m going to lose it all, including the unmentionable pubes. Ha! I just mentioned them.

Hair falling out isn’t a gentle process. I thought it would just fall out without me noticing too much, but my scalp feels like a pony tail tied too tightly with a scalp sunburn. My hair follicles are inflamed as are the rest of my innards from the chemo.

A few weeks ago we were having lunch with Amelia’s parents and her Mom asked if I’d wear a scarf or a wig. “No way,” I said. “Hats only.” Then Amelia dropped the wig bomb on me. She said, “Why don’t you get a pompadour wig, you know, like an Elvis wig? Your insurance might cover a good one. You’d rock the balls outta that.”

WHAAAAT?! I never thought of that! Wait a second, I might get a wig because it could be FUN?! There was a lot of giggling. “A pompadour,” I said quietly, “a pompadour.”

We shall see….

A conversation with Leah about hair

mohawk

It’s 8:20pm on Wednesday night. Leah’s hair started to fall out this morning. Our friend Rachel is on her way over to shave Leah’s hair into a mohawk, a last hurrah. 

Amelia: What do you feel like your hair says about you?

Leah: I like my hair. I liked both my breasts, too. I don’t consider myself that vain, but what little vanity I have left is going to fall off of my head.

Amelia: What do you feel like you are losing?

Leah:  My identity. I’m becoming amorphous. I’m a blob. That is what it feels like. I’m half of a person without my boob, without my hair. You’d think it would be freeing to shave your head, right? But it’s not a choice. Some chemical is forming me into something I don’t want to be, a toxic wasteland. I feel victimized.

Amelia: Why a mohawk?

Leah: Because it makes a statement:  I don’t give a fuck about what people think a woman should look like. It’s giving the finger to the system that says women are supposed to walk around in skirts, in high heels, in makeup, and have perky tits.

Amelia: What makes you hesitate to get the mohawk tonight?

Leah: Because it’s real. I’m losing my hair.The minute I look like cancer, I am cancer. I’m a billboard. I can’t avoid this. I can’t speed away in my car, or slam a door, or walk away.

Amelia: Do you remember what I told you in the hospital when you went in for your mastectomy, that I was fighting the urge to scoop you up and whisk you out of there? My desire to protect you was that strong and I wanted to get you out of there so badly.

Leah: Yes. I remember.

Amelia: I want to protect you from this, too. I feel the same way about your hair.

Leah: I know. I know. So do I. But there’s nothing we can do. This is happening.

Mohawk

Hair

So many feelings today. The hair loss has begun. Nothing says cancer like a bald head. It’s another stab from reality: this is really happening. I knew my hair would fall out, but I was still not prepared this morning when I ran my hand through my hair and came away with a handful. I actually laughed for a second, and then the tears came.

How could I possibly prepare for this? It’s incredibly unnatural. It is not a choice. In the past I chose to buzz cut my hair which was empowering. Now I am losing my hair because of a situation that I have no control of and it’s anything but empowering. It’s humiliating. I’m realizing that your identity gets systematically stripped away when you have cancer. I could welcome this on an existential level, but when it’s happening on the physical level, it is damaging to my psyche. I get inspected, poked, prodded, weighed, measured, asked about my bodily functions, lose my breast and now my hair. I had just started adjusting to not having a breast and now I have to navigate another layer of grief and sadness.

Is this the best that we can do? Kill every living cell in the body and hope that it will kill any free range cancer cells floating around? We can send people to the moon and we can’t treat cancer without destroying parts of ourselves?

Cancer is not a choice. It pisses me off that some people out there think, It’s just hair, it’ll grow back. Clearly, these people’s worlds haven’t been turned upside down by one awful word: Cancer. I envy them.

An interview with Leah and Amelia about Leah’s hair loss can be read here

Expectations

When the shit hits the fan in life – and I’m not talking about losing a job or a wrecking your car. I’m talking about serious, permanent life-changing shit – we have to prepare for the many expectations that come with our new lives and the huge disappointments that will get in our way. There are people that you assumed would be there who just disappear. And there are the people who you would have never thought would be right there in the trenches beside you.

At first I was judgmental and irritated about the bubble that most of us live in. What, you don’t know anything about cancer?! What’s wrong with you people? But, now I think, Why the hell would you want to get to know cancer unless you really had to? 

Expectations can’t exist in cancer time. I am at the mercy of my surroundings, my doctors, my infusions, my meds, my side effects, my tidal wave of emotions. I can’t assume anything now. With cancer, there is discomfort in not knowing what the future holds, even though before cancer I was okay with not knowing. I even thrived on it.

Leah before cancer was very unpredictable. I am difficult to keep up with. I don’t do schedules, I don’t do lists. I kind of fly by the seat of my pants and somehow get a lot of things done. You cannot slow me down and you cannot pin me down. Well, goddamn if cancer hasn’t stopped me and pinned me down.

Giving in to the unpredictable nature of cancer is going to be the hardest thing I ever do. It’s like getting into a car and letting a stranger drive me around at 100 mph – with no seat belts. We have to trust strangers with our lives when we have cancer. Trust is something that is usually built, but right now I have to blindly trust the people driving my car.

The Lesbian in the Room

by Amelia

You’d think cancer would be the Elephant in the Room. It’s not. The people who don’t want to talk about it simply never enter the room. The ones who are brave enough to join us there tend to have an intense curiosity about Leah’s experience. They ask a lot of questions about the details. They know they could be in her shoes (bra) someday and they want to understand.

So what’s the Elephant in the Room then? Well, it’s me. The wife. Without me in the room, Leah is a patient. With me, she is a lesbian patient. And I’m the other lesbian. And it is easier to ignore me than it is to acknowledge the elephant.

We’ve met with two doctors so far who walked in the room, said, “Which one of you is Leah?” and then didn’t greet me, introduce themselves to me, or even make eye contact with me during the appointment. I was invisible. I was Leah’s sister. Or Leah’s friend. Or the person who gave Leah a ride and didn’t want to hang out alone in the waiting room so here I was tagging along in the exam room for, oh, I don’t know, how about one of the most intimate and distressing conversations of Leah’s life?

This might not bother me if we were at the doctor’s office for a flu shot or a strep test. But the words out of these doctors’ mouths include things like, “You have to have chemotherapy for 18 weeks,” and “You’re going to lose all of your hair,” and “The side effects include DEATH. Now sign the consent form at the bottom.” The doctors know that most people don’t make decisions about cancer treatment alone. I am 100% certain that if I were a man sitting next to Leah, they would have assumed I was her husband, and I would have been included in the conversation from the start.

Whether or not I will be acknowledged as Leah’s wife should be the last thing on my mind during a time of crisis. But doctors like this remind me – and Leah – that we still need push for some people to respect our relationship. I speak up, I jump in, I contribute. The doctors look surprised, then start to talk to me, too. This elephant has a big mouth and asks intelligent questions.

Are you sisters? Leah chooses to introduce me from the start now. “This is Amelia. She is my wife.” Nice to meet you, most of them say. The ones who pause to freak out about our sexuality need to suck it up, because cancer doesn’t discriminate. This is a life or death situation, and we haven’t got the time or energy to battle homophobia.

The Community and the Sisterhood

I don’t really like crowds, cliques, groups, or labels. I’ve never been interested in being cool, hanging out with the ‘right’ people, acting a certain way, or following what everyone else does. Image and status have never impressed me. I’ve usually avoided labeling myself because I’ve thought that the minute I put a label on myself as anything other than ‘person’ I’m alienating myself from so many other people. It sounds simple, but it’s hard to pull off. I don’t mean this in a pretentious, I’m-an-individual-and-I’m-so-unique-and-special kind of way, because you know what? We’re all goddamn unique and special, every single one of us.

I’m no more special now that I have cancer, but now I’m standing in a different place. Now I’m standing with the Community of Cancer, and the Sisterhood of Breast Cancer. We’re all here, spread out over the entire world. We’re all on our own paths of angst, confusion, anger, sadness, grief, and terror, but we’re not alone; all of our paths merge. I read other people’s stories and I feel the cancer connection that we share. It’s a pretty intense feeling. I will embrace this label because my life is now forever changed. We all hope that our cancer is temporary, but the changes in our lives are forever. We will never be the same, and that’s ok. As my surgeon put it so well, “When this is over, you won’t be the same Leah, but you won’t be Cancer Leah.”

I want to make sense out of it, to try to figure it out, but there’s nothing to figure out and I have to learn to give in to this tumble. Cancer levels the playing field for all of us. It takes away any sense of control we thought we had. Cancer demolishes walls and strips away the things that keep people separated whether it’s gender, money, age, religion, sexuality, or race. Here we all are, naked in a room together. With cancer. We are now equals. There is strength in numbers, even if we are unwell. Is this what it takes for us to feel connected?

The side effects

I was really hoping for minimal side effects to chemo, but hope is like playing Russian roulette when you have cancer, and the odds have been stacked high against me these past few weeks.

First, I have to take steroids the day before and the day after chemo. The day of chemo I get them through my port. They made me feel hellish, like I drank a pot of espresso with some speed mixed in. My thoughts raced and I flew off the handle at the littlest thing. Amelia says she hopes I get used to them before she kills me.

Mild nausea set in next. It was tolerable and manageable for two days. But four days out, my stomach felt like it was on fire every time I drank or ate. Then pulsating pains started throughout my body. Then feeling unstable and shaky. Then diarrhea. Then heartburn. Then my eyes start to burn. To top it off I have a serious outcrop of pimples on my face and neck.

Cancer kind of forces you to be hyper aware of your body, and that’s really bad at a time like this because now I get to feel my body being destroyed on a cellular level. The thought that keeps popping in my head is Poison the body to save the body. This is the first course of six; I have five more to go. Chemo has a cumulative effect. Things are going to get much, much worse before they get better, not that I’m exactly sure what worse and better look like. Cancer is beginning to splinter and scatter me. Maybe that means I get to choose what parts of me I pick back up when it’s over.

The other war

Each person with cancer or any other illness has their own individual set of strategies. We can call it anything we want: war, journey, battle, pit stop, path, detour. Our illnesses are our little unwelcome pets; we get to name them and treat them however we want. There is no wrong approach. We do what’s right for ourselves because in the end we want to feel better by whatever means necessary. No matter what we call it, we know this: we want our bodies to win.

The United States seems to be moving backwards right now. There are so many other wars raging: racial, social, basic civil rights. The list goes on. The war that’s pushing my buttons is the war on women. Right now, yesterday, and since the beginning of time, a small group of men (and some misguided women) have been trying to regulate our bodies. In 2014, there were approximately 500 restrictions introduced by state legislators intended to limit, control, or otherwise regulate women’s reproductive rights. Our bodies are getting talked about behind closed doors – and publicly – by Congress, the House, the Senate, the White House. Our vaginas are being discussed in legal terms. By the way, in 2014 there were no comparable bills introduced to regulate men’s reproductive health care. Zero. Zip. Nada.

Clearly, women are just baby making machines. We are nothing more than a womb to these people. They’re trying to pass more and more laws about what we can and cannot do with our vaginas and uteruses. They are encroaching deeper and deeper into our personal territory. When will they start legislating our breasts? Oh, you want regular mammograms? We decided we’re not going to pay for them until you’re 50. What’s that, your breast has cancer in it? No, you can’t have it removed; It’s against our new breast laws. Breasts first! What’s to stop these politicians from creeping 12 inches up our bodies? Women make 70% of what men do, politicians keep trying to re-define the word rape, aid is cut to low-income mothers, the life of a fetus is put before the life of the mother. What’s to say our breasts aren’t next?

I’m not sure who I’m more pissed at, the politicians or the people who vote for them. They keep working to take away my rights away year after year, bill after ridiculous bill. Billions of taxpayers dollars get spent to regulate things like a woman’s reproductive rights, gay marriage, and immigration, and we can’t cure cancer or eradicate the common cold. Good job, America, good job.