Survivors

Survivor's Ethan Zohn is going through exactly what I'm going through. Relapsed Hodgkin's, autologous stem cell transplant to come:

"Zohn says that both his red and white blood cell count will be brought down to zero during the month-long hospital stay – most likely in December – at which time his frozen, healthy stem cells will be reintroduced with the aim of replenishing his body entirely with non-cancerous cells."

I'm about two months ahead of him: in about 10 days I'll be going into the hospital for a month for my stem cell transplant, pressing that "reset" button on my immune system.

Read his story, which is essentially my story, here.

It's not over.

Hodgkin's is back. In my L4 vertebrae and in a node near my colon. It's bad that the cancer's back. Bad that it's back so soon. Bad that it's back in a different place. I just finished my second hospital stay where I received ICE chemotherapy in preparation for an autologous stem cell transplant and BEAM chemotherapy, which will have me in the hospital for three weeks. That rosy diagnosis from before? Doesn't apply to me. The transplant has about a 50% chance of working.

I am exhausted.

I have been putting off updating this blog because the emotion, the tears, the pain, the fear are just too real. I'm not yet 30. I have a husband who means everything to me. My days are spent now trying to hold it all together, to keep it all in. I cry and ache with fear all day long. It's just too much.

I'm working on a shift in viewpoint. A decision to not yet be defeated. This post is a start. A restart. More to come.

Moving on.

So, I haven't posted in nearly two months. Why? Because after seven months of hell, I've moved on. I'm back to work. Feeling great. Sprouting a 'do that allows me to pass for a healthy, even hip young'n. I'm not yet ready to look back and reflect. I want to pretend the nightmare never happened. That I didn't lose months of my life to pain, appointments, hospital stays, cancer. One day I will be able to articulate all that changed in me, all the experience means. But not yet. I'm enjoying normal too much. And normal, healthy 29-year-olds don't blog about cancer.

But I will keep you updated.

Side effects do remain. At morning and at night, my saliva is still missing in action. Makes for dry, nasty mornings, greeting co-workers with a tongue that sticks to the roof of my mouth, to my teeth. I've taken to carrying a bottle of water to help, but the radiation did a number on my glands that I don't know will ever heal. Nerve damage in my thigh also persists. About half-a-dozen times a day, hot needle pain startles me in that palm-sized area on the outside of my left thigh. The pain lasts a few seconds, teasing me, reminding me of it all, then fades away. Why this patch of nerves? All we know is chemo is to thank. 

I also still have my port, which was left in to make clot-monitoring blood draws easier, but I'll soon have surgery to have it removed. After that, only the two-inch horizontal scar will remain, the scar that will forever identify me as One Who Had Cancer. 

One who heard the diagnosis over the phone at work. 

One whose husband shaved her head outside on the deck. 

One who practiced tying bandanas with tear-filled eyes before going out in public. 

One who withdrew from friends to avoid feeling even more awkward, sick, and helpless. 

One who gripped the steering wheel and screamed senseless noise on the way home from appointments. 

One who lived a nightmare.

One who still lives.

  

What a difference.

Wow, I looked bad. And felt worse than I looked. Now I've got some color in my cheeks, some fuzz on my scalp, some get up in my go. Amazing what a couple of months away from chemo will do for a gal. 

Giving thanks.

I'm thankful that my hair, eyebrows, and eyelashes are coming back. Thankful that I threw up only once this week. Thankful that the chemo is over, the radiation is over, the cancer is gone. 

Looking forward to the day I can be thankful my tastebuds have returned (I can't taste anything sweet), the day my saliva isn't sticking to the roof of my mouth like peanut butter, the day the early-morning nosebleeds have stopped, the day I don't wake up wheezing like a dedicated smoker, the day the skin on my neck and chest has changed from scaly and purple back to smooth and pasty.

This will take about 8 weeks, but when that all happens, I'll be thankful then, too.

Radiation is not easy.

The picture at right was taken from above by the radiation tech. The sides of the mask clamp onto the table so I can't move. Makes you hungry for fava beans and chianti, doesn't it?

I thought day-draining side effects were behind me. Not quite.

During my third radiation treatment, I started feeling nauseated on the table. As soon as treatment was over and the techs released me from my mask, I told them I thought I was going to throw up. "Oh, it's probably just anxiety," one said. No, that wasn't it, I thought. If I were going to throw up from anxiety, that would have happened on the first day, when the new sensation of being bolted down completely creeped me out.

I left the office and drove about 300 feet before I had to pull my car over and yak in a Target parking lot. I called the office to tell them I'd just lost it, to ask if that was expected. The nurse said when a large portion of the body is radiated, like an entire chest, which is my case, sometimes patients throw up. Sometimes.

I've been throwing up with regularity ever since. About 3-4 times a day, mostly at morning and at night. It's a combination of a raw esophagus, acid reflux, and the thick, sticky saliva I'm choking on. All caused by the radiation. I'm on liquid lidocane (disgusting yet effective), Miles's mixture (like Pepto and cough syrup combined), Zantac, Prilosec, and lots and lots of water. Swallowing is painful, so I haven't been eating much, which makes throwing up all the more painful. I've lost eight pounds in the last week. 

Some have asked, if the cancer is gone, why do I need the radiation? Protocol for dealing with Hodgkins combines chemotherapy with involved-field radiation. Even if chemo kills the cancer, it is very likely to return soon without radiation to the lymph nodes contained within the involved fields. Chest and neck, in my case. And I don't want it to come back.

I have four more 15-minute treatments ahead of me. The doc says it will get worse before it gets better. I've returned home from work, using vacation days until I'm able to go back. Another bummer.

So much easier than chemo, everyone told me. Well, in a way, it is. My pain is in one place: my throat. With chemo my entire body ached with exhaustion. But no matter how old you get, throwing up is just traumatic. Painful. Pitiful. At least I've got Graham here to hold my hair back for me. Wait...

Radiation: One down, 16 to go.

Left work today at 4:15 to make my 4:30 appointment. My first of 17 radiation treatments. Everyone's been telling me it will make me tired, my skin might burn afterward, but that it's cake compared to chemo.

They called me back at 5:15-- I'd waited for 45 minutes. Unacceptable for someone trying to juggle these appointments and a work schedule. They assured me it was an atypical day. Let's hope so.

I changed into a hospital gown, put my clothes and purse in a locker. Olga the technician led me back to a large room, beautifully decorated with a mini-rain forest of tropical plants in the corner, teak benches, hardwood flooring. Olga eased me onto the table and bolted my head down with the mask they'd cast last week.

I was in the mask for more than a half hour. I don't think any description could explain how it feels. So foreign. So uncomfortable. And while I was bolted down, two noises filled the room. One, a high-pitched screech, the other, the sound of an old-fashioned pencil sharpener cranking a circle around my body.  I was handling it all pretty well until the last five minutes. I felt like I couldn't take it anymore. I began to move my feet. I started to cry. (I realized the crying was a bad idea; in the mask, there's no wiping of tears, and visibility is reduced to zero.) The minute the table slid away from the big white donut, I moved my arms and Olga rushed to take the mask off. She could see I was uncomfortable and said she has some ideas about how to make tomorrow a little easier on me. 

I walked back to the dressing room, and as I changed out of my hospital gown, I could see the impression lines the mask had made on my face, and I saw my chest was red.

It was a hard few minutes, but it wasn't chemo. And for that, I am thankful.