by Amelia

“It  must feel great to get your last bad chemo! Congratulations!”

Three weeks ago, this was the message that kept flashing on our cell phones and repeating in our emails. Leah read them as she laid on the couch with achy muscles, bowel pain, and  a mug of ginger tea. She did not feel great.

I keep waiting for the moment when everything feels better. We’ve been holding our breath since September 3, waiting for the moment that it’s “over.” I’m starting to feel just how much it’s a process, not a moment.

Yesterday was the first day I relaxed a little. These past three weeks I’ve been waiting for the bad chemo to work its way through Leah’s system – especially her immune system – so I can stop worrying that she is going to die from a stupid little germ that hitched a ride on her off a clumsy orange cart at Home Depot. I have never known what it’s like to worry like this, and to have the worry actually be based in reality. Leah’s blood work came back good yesterday, so woo hoo! She’s not going to die for hopefully another 40 years or so.

But Leah’s treatment is still so far from being over. Until November, we will drive the hour and a half to Rochester once every three weeks for her targeted chemo, Herceptin. Starting March 14 she’ll get daily radiation for six weeks at the nearby Cayuga Medical Center in Ithaca. In addition, in the next six months Leah will need at the minimum two echocardiograms, two appointments with the hair growth researcher, an annual mammogram and ultrasound at the breast clinic, a follow up with the breast surgeon, a new patient appointment with a local Ob Gyn, and a consult with a Rochester Ob Gyn surgeon named, of all things, Doctor Toy.

So yeah, we don’t feel like celebrating. With Leah feeling a bit better, the chaos and stress of life is already knocking impatiently on the door. When she was diagnosed, we had closed the lounge for good only five days earlier. The goal was to finish the renovations on the new restaurant and bakery and open in November. And March is here and we’re not there yet. Talk about stress. I can’t even begin to describe it, but good grief I am sure not exhaling anytime soon.

The trauma of cancer does not go away.

I’ve talked about it before and time hasn’t change the deep feelings of grief that I have. Most of us have directly experienced a significant trauma or loss and most of us do the same thing: repeat the traumatic event over and over in our heads trying to make some sense out of it, trying to process it. I am still doing that. I am on repeat in my head, and out loud at times.

I’ve slowed down on writing because lately the same feelings keep bubbling up that I’ve already written about: loss, grief and sadness. I’ve had a body part amputated, lymph nodes removed, my insides fried, endured terrible side effects, and lost my hair. I am a different person physically and emotioanlly than I was three months ago. I have to figure out how to live with this for the rest of my life.

I don’t really want to dwell on my dark thoughts, but I don’t want to hold on to them either. Letting go of them is extremely hard. There are too many “what ifs” to wrap my mind around.

Lately I keep thinking of the future, and what I need to get done to ensure Amelia’s future if I’m not here, if I die from cancer. HER2+ breast cancer is notorious for recurring years down the road in places like your brain, bones, and liver. My dark thoughts tell me it’s not a matter of if, it’s a matter of when, so I need to finish this building, open the business, build another teardrop trailer, re-do the bathroom. The fact is, I could be with Amelia for another 100 years and it still wouldn’t be enough time. She is what grounds me to this world.

I have paranoid moments when a flash of light catches my eye or my vision gets foggy and I think, It’s in my brain. An ache in my right side, It’s in my liver. A creak in my bones, It’s in my spine. 

There are no reassurances about anyone’s future, but even more so with cancer. When people say, “You’ll beat this,” they are reassuring themselves, not me. Though nothing is written in stone, I got a glimpse at what my death could look like. I could be going through all of this just to die. And I need to figure out how to live with that.

I don’t sit much. I am standing right now as I type at our counter-height kitchen table. I’m at my best and most comfortable when I’m in motion, but usually I need some caution signs around me because I’m wielding some sharp, high-powered tool.

I am not a typical woman. I build things. I operate power tools every day. I use hand tools every day. I handle very, very sharp objects every day. I move rough cut wooden boards every day. I lift heavy objects more than I should every day. There are plenty of opportunities for bumps, scrapes, cuts, splinters, bruises, punctures, and pinches.

A while back I wrote about the warning sign that now comes with my left arm. With ten lymph nodes removed there are less pathways for fluid to drain which means when I injure myself there’s a greater risk of swelling (lymphedema). I’m not ever supposed to injure my left arm. Not ever. Not good for someone like me.

Last week I scraped my left index finger with a blunt star-shaped screw bit while I was driving a screw into drywall. It was a very minor injury, but  I was alarmed to see that for the next four days my finger was extremely red and unusually swollen. Amelia fretted about the threat of infection. I soaked it in salt water every day and used a prescription anti-bacterial cream. A week later the swelling was down, but it was still bright red and wasn’t even close to healed. That’s because I am still neutropenic from the toxic effects of the chemotherapy. Right now I have zero neutrophils, which are a type of blood cell you need to heal wounds and fight off infection.

I knew lymphedema and poor healing were possibilities, but this was a double whammy and another step into the new normal. Every time some new bad thing happens, I’m surprised. I have to somehow not get even a small scrape right now, not just on my left arm, but my whole body. Neutropenia might be temporary, but lymphedema is a life-long risk.

Not working is not an option for me right now – for so many reasons. But I have to figure out how to reduce my risk of injury.  My first step will be trying to find a pair of women’s tight-fitting gloves that allow for dexterity and range of motion while protecting my hands. Then maybe some lightweight, high tech body armor. I wonder if they come with packs….

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. 

This is what cancer felt like this week. We keep trying to remember that this is just temporary. This is temporary, right?

I think we are all more attached to pain and trauma than we should be. We have to actively seek out the good news in the world because so much trauma is thrown at us every day. This is the scenario: one day I push you out of the road and save you from getting hit by a car; the next day I drop something on your foot and break it. The broken foot is what stays with you, the imprint of pain. Years later you will still vividly remember me breaking your foot. We hold onto trauma like it’s our favorite stuffed animal. Trauma is our security blanket, our little Binky.

Last week after I had my drain removed, Amelia and I had lunch with her parents. We were sitting outside at a sidewalk cafe and ten feet away from us, a pickup truck hit a bicyclist. A terrible noise, a body thrown up onto a hood and tossed to the ground, a bicycle run over. It was traumatizing, for me, for the cyclist, for the driver, for everyone else witnessing it. Remember when I said I am the person who runs towards the fire? Yeah, I ran towards the moving truck. The woman with 30+ stitches in her chest is running out into the street. Amazing what adrenaline can do. The stitches, pain, and cancer trauma were all left in my chair; and the rest of me was out in the street with the cyclist. He miraculously was fine but very, very shaken up as was the driver of the truck. The cyclist was wearing a helmet, thank Dog. Amelia and I went into “take charge mode” like we often do, she with the cyclist, me with the driver. When it was over the police officer who came to the scene told us his aunt had breast cancer, then our server, who had also witnessed the accident, told us her Dad had just been diagnosed with brain cancer. The cafe was her Dad’s place. Here we all were, bound by trauma.