Tuesday, April 30, 2013

Closer to Worth-My-Weight in Gold

I was so excited to write about this last week, but slept through most of the days. I had to sign a waiver saying I was cool with the introduction of three gold splinters into my vagina. That's right. Bling. Effing. Bling.

My favorite lady-radiologist-in-charge, Dr. Marnitz, handled things. The ladies in radiology were all very kind and it was almost painless. She had a phone call with Dr. Halwani, my favorite surgeon, just before she installed the gold markers. No matter what, I'm more comfortable with a vagina owner dealing with mine. She gave me the rundown on what it looks like in there now and it sounds like Halwani did a great job. It's funny because the way she described things is just how I imagine it to be in me now.

The gold bits are markers for the planning and correct administration of the final phase of boost radiation with the CyberKnife. The gold, being non-magnetic, won't go flying out during MRIs, but makes a perfect little line in the x-rays, CT scans, MRIs, all the scans. They mark the boundaries of where there may still be a few cancer cells which everyone wants to blast out of existence. Super idea, as far as I'm concerned.

The CyberKnife is a very focused beam of radiation that can be tuned to more precise locations than regular radiation and brachytherapy. Brachytherapy is the normal way that they add a boost of localized radiation, and it's done with a kind of pen that beams right at the target. But getting that to work for vaginal cancer is a bit tricky, so CyberKnife it is. The real benefit is that you can keep irradiating the cancer cells while sparing the surrounding healthy tissue. To do that for vaginal cancer, they also have to pack me full of cream-soaked gauze, which is not the most pleasant experience. Apparently I can fit about two and a half meters of gauze, which is not like the size of a baby at all - the gauge for maximum vaginal stretching in my mind. I just tell myself it's not childbirth and it doesn't last long anyway. 

The only further side effects which have been going on over the past week are the broken glass eliminations. Inflammation, very normal, in my nether bits. Such a bummer. But the more fluids I drink, the less painful it is. 

Last week I had to stay in the hospital from Tues to Saturday... ugh. It wasn't all bad, and my roommate was a non-smoker who didn't watch TV and liked the window open all the time. We were compatible. But I lost a little more weight, even though my dad brought in food often and I ate as much as I could. This week was a banana and peanut butter kind of week, as well as a cheerios with milk and bananas kind of week. We did have our Sunday cake like good Germans. And the 40% fat cream cheese on crackers is also a good snack. Protein raspberry yogurt smoothies, fries, and veggie burgers are also on the menu - there's a veggie burger restaurant just down the street and that food is good. But I guess I have to give ice cream a try again. I do feel better when I stay well-fed.

When I got home on Saturday I was exhausted. But after a bit of a sleep, Joshua made me some fried green beans with sesame seeds and soy sauce and some noodles and it was maybe the best meal I'd ever eaten. At least, the best since the perfect eggs and toast he made the morning I'd left for the hospital. 

The schedule is pretty light going forward. Today, Tuesday, CyberKnife and a night in the hospital (for insurance purposes - effects of treatment shouldn't be significant or different from everything else I've gone through, so say the docs). Weds home and no treatment. Thurs regular pelvic radiation. Friday CyberKnife and stay the night. And one final CyberKnife next Monday with a night in the hospital. So... home next Tuesday and focus on recovery from there on out. Phew!

My dad brought all kinds of treats, from dried mango to salt and vinegar potato chips, and a couple bags of real black beans. Black beans here are a different variety and it's just not the same, so this black bean haul is like... well... gold. 

Really, truly, only one more week now.

Monday, April 29, 2013

So Tired

They say exhaustion and fatigue are the most common "side" effects of both chemo and radiation, and Joshua and I planned to be prepared for that. I never knew what tired was until this. My dad brought a deck of cards to the hospital thinking maybe we'd play and just looking at them gave me the feeling of being overwhelmed by too much to think about. It's a brain tired where there's no room for anything; I haven't been able to do much reading, movie watching, knitting, or anything else that typically works as a leisure activity because just thinking about it makes me tired. Lying in bed, listening to nothing, doing nothing, and thinking about nothing is perfectly satisfying.

This week it's been nice to listen to some music, which was also generally overwhelming over the past few weeks. Some soft quiet music was good, but it didn't take much for me to feel jarred and vibrated in the wrong ways.

I'm coming back. I still feel pooped when I think about thinking, but it's going to get better from here on out.

Friday, April 26, 2013

home stretch

I can hardly believe it myself, but this is almost over. And last week this view was all grey! Spring, final chemo, etc... big relief.

Another source of relief, for Joshua as well as me, has been the presence of my dad this week. A bit of fresh energy and a pair of free hands goes a long way around here.

Over the next week and a half I get radiation and the CyberKnife radiation boost. I want to tell them that they already got all the cancer cells, but that is not really my job. I will say this, though: never chemo ever again.

Never say never? Whatever. Never, never, ever again never.

I felt great when I was diagnosed, you know? Healthy, happy, energetic, and in control. And the treatment made me so ill... it is the best of what we know is most likely to work. But not for much longer. I'm looking at you protein geneticists who are learning to turn off the cell mutations that allow cancer cells to get away with anything.

And now I'm tired again. Breakfast should be here just in time for my first nap of the day.

Love, from the folding bed.

- posted using tiny keyboard

Wednesday, April 17, 2013


spindly shrubs turn into flower-splosions. spring is the best.

Tuesday, April 16, 2013

Diving into Week 4 and Spring!

Today (Tuesday) I feel alright. Might be the new meds - something appropriately called Vomex and another one with cortisone. But it's also the day before the next chemo, typically the best day of the week in terms of how I feel physically.

I'm willing myself not to think about the fact that things start up again tomorrow so I can enjoy feeling good now.

In other news, it's Spring! Truly. In fact, it's been as warm as 23C (73F) and that is t-shirt weather. Buds are finally sprouting on the bushes and Berlin is out and about on the streets. Pretty fun, very inspiring, perfect timing.

I wrote a haiku about it.

Sign of Spring

Spring mosquito buzz
around my head. Doesn't she
smell my chemo breath?

And no, I didn't get bitten all night long - pretty sure it was a dude, or I killed it with the remaining chemo in my body.

Let's hope this coming week is no worse than last week. Not too much to ask.

Saturday, April 13, 2013

Time Flying?

Thank goodness time is flying by now. I haven't posted for like 10 days!? Week 3 is almost over, at least that's how it feels, and the past two chemo reactions have not been as tough as that first week. I still spend a day - or three - in bed, but I don't feel as bad. And this week, the meds seem to be working as well as they ever have. Good news!

But I am pretty tired. So this is gonna be short. Thanks for asking, everything is okay. I'm all used to the picc line now and pretty happy about not needing to be needled all the time. Side effects have been mostly minor, except for all the tiredness I have. And I find it hard to look at the computer screen. So... haven't watched many movies. The days can pass slowly.

The big challenge now is to keep my weight up. That's right, apparently weight loss is a no-no for a patient on chemo and radiation. One's ability to maintain weight is linked to a better prognosis and stuff. I've been going home the day after chemo (so good) but if I lose more weight this week they're gonna try to keep me at the hospital longer. To make sure I eat. Which is funny because just thinking about the hospital makes me wanna toss. The words 'hospital food' are banned in our home. Joshua has figured out how to feed me stuff I will eat. So to stay at the hospital would be counter-productive, in our view. Luckily, we ran into Dr. Marnitz (the lady in charge) and told her what was up. She was like, 'yeah, I can understand that.' And she called Dr. Hipste-I mean Dr. Exner to tell him that it's probably better if I go home. We'll see. They made us buy a scale and I have to track my weight this week, no lying. I mean, I am trying but it is not as easy as it may sound to get your weight to go up when you like eating a healthy diet.

Yesterday I sent Joshua out for a pint of chocolate Haagen-Dazs to help the cause. I think that's probably the silliest thing ever, but we're trying. Also, I didn't take my nausea medicine quickly enough and ended up spewing the half-pint I ate anyway. So much for that attempt. We don't have a freezer, so it's important to just eat it when it arrives.

Anyway, these are the daily trials and tribulations, and they only last for two more weeks. I can't believe it. It feels like I can do it and get through it. One last fun tid-bit that you probably don't want to know: the location where the radiation is administered is subject to hair loss. So, no troubles with the hair on my head from chemo buuuut...

Thursday, April 4, 2013

Delay Day

A few days after chemo last week I was overcome by a series of extreme yawns that forced me to expand my lungs as far as possible and then exhale everything through my mouth, as you do after a yawn. This happened five or six times in a row, kind of like when you walk out into bright sunlight and suddenly have to sneeze.

It made me think that perhaps my body was using my breath to get rid of some cisplatin. We get rid of a surprising amount of toxins via the lungs and breath, so it’s not unreasonable to assume I was doing just that. 

Today is chemo day two. The picc line is proving it’s worth, as I’ve not been needled this week at all. Plus I’m getting used to it and much less worried about it, and I’ve been reminded by a nurse-who-should-know that it’s better to endure this now than to add thrombosed veins to my list of problems. 

The chemo was given after a bag of water spiked with pain meds, then an immediate dose of radiation at 1pm. Then the second bag of water. This was supposed to happen yesterday, but everyone screwed up. 

We arrived at 10am yesterday, as instructed. Well it might have been a bit later, but it’s hard to feel bad about a few minutes when we ended up waiting in the waiting area for about 2 hours after checking in. My appointment for radiation was at 1pm, and at around 12:30 they brought us to my new room. I prepared for radiation and went, assuming we’d be doing the cisplatin afterwards.

This is why you tell a patient like me the reasons for things. A doctor came in a little after 2pm and said, ‘So Mrs. Marks, when is your radiation appointment today?’ This is something the nurse had already learned from me when I checked in on the floor, but I said I had just completed it, proud of myself for being on time and ready for him. But his response was, ‘Oooh, that suc- is not good. Not good at all.’ 

Nobody told us that having radiation immediately after the cisplatin was important. I’m only getting it once a week, after all, and radiation happens each week day. However, because I had the radiation yesterday before chemo, they delayed chemo until the next day so I would have it immediately before my radiation treatment. Joshua and I would love to see the study that compares chemo given directly before and given 9 hours before radiation. I suggested that we give me radiation last thing before bed and then get me in for radiation first thing in the morning. ‘A nice suggestion, but it is not possible.’

They said I could go home if I wanted, but since I was already settled in a nice room with it's own bathroom I figured I'd just stay. The schlep to and from home wasn't that much fun. And Joshua stayed through the afternoon and we went out for a tiny dinner. My appetite is about the size of a large apple these days. I had no roommate and watched a movie before going to sleep. Today has been relaxed, I'm reading a book I found in the waiting area and it has me enthralled, thank goodness. I have a new roommate and she is relatively healthy. Her name is Ramona. She speaks no English, but we communicate in smiles and commiserate about the awfulness of the food. 

Around 5pm today I decided that I needed to get outside for a walk. Last week, the worst day was the day after cisplatin, so I knew that tomorrow wouldn’t be an option. I decided to go and walk along the canal that is visible from my window. 

Leaving the building I realize again that the air inside is not good. It’s not like it smells bad everywhere, but it doesn’t smell good either. Lots of whiffs of alcohol hand sanitizer. The entire bottom floor where there’s access to the outside smells like tobacco smoke because people are smoking right outside the doors. We once saw patients in hospital gowns smoking in the entry bufferways when it was very cold outside. Late last night I was sure I was smelling smoke, as if one of my hall mates is smoking in their room when the floor is quiet.

I hold my breath while I get through the ground floor and the cold air outside smells and tastes incredibly fresh by comparison. As I leave the hospital campus I feel like I’m escaping, which is nice. I cross to the canal side of the street and walk along the wide bike and ped-way. It’s pretty grim. Still depth of winter according to all the trees and bushes. Not a green thing in site, everything is grey. 

Across the canal is a metal disposal plant; I watch a giant scooping machine take large scoopfuls of metal fragments, place them in another bin, and then crush them with the weight of the scoop. I think about water quality and realize that it’s incredibly comforting to be walking by the water, anyway. 

I thought of something Dr. Marnitz said to me, the radiologist who I first met with and who is in charge around here, but who is on vacation last week and this week. 

She said, ‘The cisplatin attaches to the blood cells and goes throughout the body. Then it is released, we don’t know how, and then the body gets rid of it.’ 

I think, ‘maybe she meant that this happens right away.’ The chemo really only does damage for this brief period of time, and then I suffer the effects of it leaving my body. Wow. This is so logical and provides an explanation for why they are inflexible about when chemo happens in relation to radiation, so I happily grasp onto it.

The path veers away from the road, thank goodness, and what is probably a green zone in brighter seasons acts as a nice wide buffer. It’s almost like being in nature. As I walk, I’m taking big breaths, trying to inhale a lot through my nose and exhale it again through my mouth, as if I’m breathing out pure cisplatin. I imagine the hospital as a bit of a stale chemo-breath house and commit to opening my window more often. 

But the idea that all I need to do over the next few days is get the cisplatin out makes me feel better. I know how to detox. If it’s really just important for that one day of radiation, then I’m going to do what I can do make the detox as quick as possible. More fennel tea for me, then, even if it’s wretched (which it’s not, turns out). After tomorrow's radiation, maybe I will feel good enough to go home.

I sit for a few minutes on a barely wide enough bollard which is not comfortable, but there’s nothing else to sit on. I think I can taste cisplatin on my own breath. I’m convincing myself that this week’s recovery will be better than last week, which makes me feel pretty good. I sure do want to be in control. I consider talking to a plant about cisplatin and then decide I might fumigate it, and of course there are no green plants or flowers with sympathetic looks. Okay Spring, I give you permission to start right up.

I wait until I’m ready and then get up and walk back towards the hospital. As I walk through the street entrance I see a sign that says this is a no-smoking hospital. Very funny. 

Tuesday, April 2, 2013

Sophomore Slump

Ugh Week 2 of 5 is the worst! Thinking about getting chemo'd again makes me want to barf, of course.    Instead of telling you what I think of side effects, I'll direct you to a favorite post from a favorite cancer blog; the post is called Side Effects. The blog is called Butt... It's Cancer.

Over the past few days, knowing I'm in for more of the same as last week has also made me want to cry. Both Joshua and I had surreality moments this weekend. This is happening? You're feeling bad because of chemotherapy?

Wednesday (tomorrow), the chemo again. Thursday I will do my best to sleep all day and eat an apple, maybe. Friday I get to go home after radiation, and then two days of nothing at home. IT SHOULD FEEL BETTER THAN THIS to be at this point. Week 2 is over before we know it. Week 3 marks the halfway point and I love halfway points. I like halfway so much that I mark the halfway point between halfway and complete (at 3/4 done I'm celebrating the half of a half!).

At halfway, you know what you did and you know you just have to do it again. It does not matter that you're tired or that the effects are cumulative or that you're sick of it - after halfway you know what's in your future and you just completed it once, so you know you're capable of getting through it. After halfway, you're on your way back home, instead of still moving farther away.

I usually tell myself that my goal is halfway and then I make it. (Think about it - all of your goals can be only half as far away as you thought!)

The halfway point for radiation treatments is the end of Week 3. But halfway with chemo? Somewhere during Week 3. So close.

Week 2 sucks so much; it's not even halfway and I'm going to be thrilled when it's over.

Hoping for the best, planning for the worst.

Cold Winter

On the way to first radiation of Week 2. U-bahn TV news says we had the coldest March in 130 years. Sorry Berlin, I needed it to stay depressing while I have depressing things to do. Summer is going to be so good this year.

- posted using tiny keyboard