Saturday, March 30, 2013

Week 1: Humor and Self Pity

The new hospital is not the old hospital. Here are some things I have been given as chores:

This is, quite certainly, molasses. The first ingredient is beets. It smells and looks like molasses. I love the smell of molasses, which is fortunate because I have to make a warm water bubble bath with this and sit in it for five minutes, twice a day. They gave me a little butt tub. I laughed.

I will call her Nemo

This is meant to help me avoid mucositis, a sometimes side effect of chemotherapy.

Cisplatin is most dangerous to rapidly dividing cells, like cancer cells, the cells of mucous membranes, and white blood cells. The inside of the digestive tract is lined with mucous membranes, but how molasses is going to help all that is a mystery. Joshua says it's for the ill vapors. Maybe they like molasses and come out when they smell it?

Upsides: It smells like molasses and it is warm. At home, the space is comparatively luxurious and I don't mind at all.
Downsides: The shower in the hospital is in the hallway; it is shared by everyone on our end of the floor. It's tiny and gross and there's this little cube of space that is just barely big enough for me to put the tub down and sit in it (kind of).

Also, the water in the shower is cold. Radiation can affect the skin and hot showers can aggravate those problems. My radiologist said my skin will not be affected because they're using high frequency radiation and so I shouldn't have problems. Maybe other people on my floor get lower frequency radiation and so not-even-tepid water is all that we're allowed. Maybe nobody has bothered to ask why the shower is so damn cold because they feel sick, and grubby from not taking enough showers.

don't say 'gland-o-med'
Next up, mouth wash. Another place where the mucous membranes can get infected is the mouth. Mucositis is avoidable, and I'm unlikely to get it, but keeping clean is one way to increase the likelihood of my not getting it. This is some special mouthwash unlike any mouthwash you all have ever experienced. There's no alcohol or menthol, it has a kind of soft flavor and they call it orange. Swish for 2 minutes.

Upside: It's not that bad.
Downsides: The worst flavor comes after you spit it out. Then you have to wait for 15 minutes before you can eat or drink anything. You cannot rinse your mouth with water. Just gotta suffer through it, and it makes me want to retch a little. Best if used after each meal, but at least twice a day.

The cream. The nurses told me that I should take it home and tell them I'm all out and get more because it is The. Best. Cream. You can use it on your face, neck, body, hands, feet, everywhere and it's awesome. This is also supposed to help reduce any skin problems associated with radiation (which I'm not supposed to suffer from). But cool, I'll take it. There is no downside. It smells neutral. I can use it as often as I want, EXCEPT one hour before and one hour after radiation treatments. Why? Because it can increase the effect of the radiation and have a negative effect if used too close to treatment times. What is this stuff?

Deep breath, the pick line. Sorry, this one is just a little tough to stomach. I'm already planning my escape. This required minor surgery and it hurt a bit and it was only local anesthetic and I wanted to be sleeping. It is a little tube that goes into my arm and then into a vein and all the way to almost my heart. I saw the x-ray; there's a tube in me. I sure don't like the idea of this and the reality is even worse.

I get this fantastic modern medical miracle because chemo chemicals can do damage to veins. They did the first round intravenously, but going forward I get chemo straight to the heart. Ouch. I mean, my heart is arguably stronger than my veins. Buuuuut. Oy. Okay, so it's a good idea, the right idea. Miraculous. The thing is, I kind of hate it.

Upsides: It's held securely in place so I can't really pull on it and fuck everything up. It's also above the elbow so I should be able to move my arm like normal without anything bad happening.

Downsides: There is a dongle hanging off my upper-inner arm that is connected almost to my heart. It is taped with clear magic sticker that does its job well but makes my arm look gross and saggy there. They used iodine on my arm so it's all kinda reddish, which looks unnatural. Joshua can't hug me without me cringing and trying to fling my arm aside. It makes showering difficult. It's a constant reminder that I'm sick and need serious medical help and soon I'm going to have to go back to the hospital for more poisoning. I worry about it almost constantly. I worry about it in my sleep.

Dear doctors. You guys are great. You're doing a good job. But I need to be able to take care of myself. With only a cold shower, I don't want to wash or do the butt bath. I especially don't want to do it in a shower that I share with the rest of the hall. A constipated person (side effect of chemo) is never going to be able to poop in a toilet that they share with the whole hall, because the hall mates need the bathroom too. We all interrupt each other by trying the door handle and I always have to wait to use it, something that makes me afraid of the possibility of diarrhea (side effect of radiation). I'm not comfortable squeezing around my roommate's bed to get to our shared sink to use my mouthwash and brush my teeth. Not to mention we can't open our closets all the way because there's not enough space in the room for two beds and two bedside table carts.

Joshua and I realized that there's a difference in hospital stay mentality here, and it is a good thing. To us, a stay at the hospital means something must be seriously wrong. Right? I mean, it has to be really bad for them to keep you at the hospital. But here, it's not like that. You stay in the hospital so they can take care of you. Staying overnight after a minor surgery, like having a pick line installed, is normal because they just want to be sure nothing goes wrong - or if it does, they're there to handle it. They want to be able to give you medication if you need it. That's pretty nice and not unreasonable.

At Westend, after surgery, I was totally happy to stay at the hospital. I had a nice room with a bathroom and a view out the window to trees and a clock tower. The nurses were attentive and kind (mostly). If I buzzed, someone would come to see what was up. At this new hospital I buzz and then someone asks me what I need over an intercom. I need a nurse, surprise! The room is tiny and I share it with someone else. The bathroom and shower are in the hall and shared with lots of people.

And oh my goodness the food is so bad. I was nauseous anyway, and the food made it so much worse. I couldn't really eat. Even thinking about it now makes me want to toss. The doctor in charge of the floor, a young, friendly, kind, present, capable guy who I like a lot, asked me why I didn't want to stay over the weekend. I said I wanted to be able to eat. He apologized and said that, yes, food is a problem but their contract doesn't expire until next year. The doctors are all a little surprised that I've requested to go home as much as possible. They must think I don't want to be taken care of. I've been thinking about it and I have a bunch of other things to tell him about why I would rather be at home.

I'm also planning to demand that they take out this pick line when I only have two treatments left. One in the left arm, then one in the right arm, intravenously. I want to be able to cuddle without feeling like a 13 year old in an abstinence only education program. Neerrrrvvooouuus. There may be medical benefits to the pick line, but the real-life downsides are unacceptable.

But hey, week one is over. Only four more weeks of chemo to go. I'm 1/5th, or 20%, done with chemo. It did make me feel sick, but the meds helped. It also makes me tired and weak and blah, but I figured out that good, fresh, crisp apples can cure just about anything. If I'm on a fruit diet for the next few weeks, I think that'll be okay. Fruit and peanut butter. Mmmmm. In other good news, because it's Easter this weekend we get both Friday and Monday off. My first two weeks of radiation are 4-day weeks. I am into that. It's Saturday and I feel a lot better; maybe tomorrow we can find some nature to look at.

I also want to acknowledge the power of self-pity. Self-pity is the perfect emotion when you know you deserve it. And the more you feel it - or try to stop yourself from feeling it - the stronger it gets. I'm indulging in my self-pity. I feel awful and there's very little that anyone can do to make it better.

Sometimes, crying is the best thing to do. It's kind of like finally vomiting when you feel nauseous - once you get it out you feel better. I have not needed to vomit with this first round of chemo, although I thought I might a couple of times. But crying... yeah. And it feels alright.

Joshua is doing the best anyone can, and that helps. Also, thank goodness for surprises in the mail and house plants and flowers.

good thing about this guy

Thursday, March 28, 2013

Shit... Compassion

My first roommate makes me feel lucky, among other things. She has tumors in her lungs and she smokes and drinks coffee all day and into the evening. She's pretty grubby, too. I'm guessing she's actually in her 60s, but she looks older. Her teeth are removable. Her hearing is poor. She's been at the hospital for four weeks straight for treatment, with another fortnight or so to go. I'm comforted by my relative health and consciousness and I am judging her. She has problems that she is exacerbating, and so I sit safely within my bubble of judgement and look down.

I should at least feel ashamed of being judgmental. What do I know about her life and who am I to say what she should be doing? I should be ashamed? But I can't help it. I try to feel sympathetic but just thinking about how sad the situation is makes me start to tear up. If I attempt sympathy, it's overwhelming, and I cry.

Fortunately, as my eyes swim she comes into the room and emits a smoker's cough that is more accurately described as a chest rumble, and I can move from tearful sympathy to slightly disgusted pity once again. Safe.

When I go for my evening chamomile tea, I bring back two cups. She's never had chamomile tea before, she doesn't know what it is, but she is so grateful. For the next round we go together, because she didn't realize there was a drinks station. I show her my ginger paste, which I will turn into tea, and she doesn't know what Ingwer (in German) is. She refills her coffee and I choke down the ginger which is too strong, but so good for me.

She doesn't seem to be feeling any side effects from her treatment, which is radiotherapy and now also chemo, but I'm guessing she's on the same meds as I am, if not more. She mimed at her meager dinner that she's not really hungry, but I told her we have to eat anyway. She falls asleep with the TV on. How can I tell? She snores. I think we're going to be friends.

Monday, March 25, 2013

New Perch

The third floor is up with the crows, the doves, and the magpies, nice to be able to over-see things. The doc said the watered down cortisone might make me emotional - I think he meant goofy.

Had the first chemo cocktail today - they water them down like crazy up here, can't feel a thing yet. And I slept through the radiation.

- posted using tiny keyboard

Sunday, March 24, 2013

Countdown to Treatment

Tomorrow I'm going to start to do something I haven't done for three years: a daily commute. I know, how nice for me. But this commute is especially... dramatic. Monday through Friday I'll have pelvic radiation. There was a lymph node that was cancer-positive post surgery, which means the cancer cells have learned how to travel. So pelvic radiation will blast my whole pelvis in an effort to kill any cancer cells that have traveled.

Radiation works because it kills cells as they are dividing. Cancer cells are always dividing, whereas healthy cells divide cyclically and more slowly. Chemotherapy works in a similar way, but I'll have low dose chemotherapy. This will not be enough to kill cancer cells, but it will weaken them so the radiation is more effective. Other cells that divide often include white blood cells. So my immune system will be weakened. There will be other side effects, probably some chemo related ones like a bit of nausea. But I'll have anti-nausea meds. Maybe my hair will fall out, a little (hair follicles are also rapid dividers), and if so it will grow back.

Long term, there are some risks. For example, radiation is another form of x-rays. X-rays are a mutagen, which means sometimes they cause normal cells to mutate into cancer cells. Great. Also, the radiation is likely to dry out my mucous membranes. Things like my uterus are probably going to get a bit more dry, frail, less stretchy.

The first couple of weeks I probably won't have many side effects from the radiation. My radiologist said it's cumulative, so probably during week 3 I'll start feeling more and more tired, fatigued, and I may have some nausea (but again, anti-nausea meds). I may be a bit incontinent - pelvic radiation, definitely radiating my bladder, lower intestines, the rest. Those will be, most likely, temporary side effects. My menstrual cycle will also be affected, most likely only temporarily.

Historically, the ovaries are also affected by pelvic radiation. This has meant that women become infertile and often they go through early menopause. My surgeon, ever at the forefront, is one of the only doctors in Berlin who does a rather new procedure that moves the ovaries upward and out of the area where the radiation will be. My radiologist says my ovaries are in a great position and will only receive some scatter, no direct radiation.

On the eve of this next phase of treatment I am positively excited. I know that sounds like some kind of positive thinking bullshit, but it's not. I've been allowed to wait long enough to feel totally healed from surgery - partly because we opted to do the fertility stuff. Those two weeks were valuable because they allowed me to heal and get strong again. I'm ready to start and finish the process that will destroy all the cancer cells that threaten my health.

I'm also a bit excited because of a comment a doctor made on Friday. Now, I've always been into complementary therapies and medicine. My dad is an acupuncturist and I am a certified reflexologist. These and many other therapies are helpful, they help people every day, and some, like acupuncture, have been helping people for centuries. So why not? I'm also a firm believer in the efficacy of modern medicine, especially for emergency medical care and for diseases like cancer, which have had a lot of money thrown at them. Of course, vaginal cancer isn't necessarily included in the money thing, but I'm confident that the treatment I'm undergoing is going to do what it's supposed to do.

I believe that there's a place for modern medicine and complementary, traditional, alternative medicines and therapies. There is a holistic hospital here in Berlin - actually a bit on the outskirts of the city, by a lake, that is an option for treatment. There are a few holistic hospitals actually. However, you have to have more comprehensive health insurance to be able to go to them without paying out of pocket. My public, basic option doesn't cover it. But it will cover an initial consultation there, so my dad convinced me that I should email the head doctor, who he'd already been in touch with.

Last week we tried to make an appointment, but it didn't work out. He called on Friday and told me a couple of things that would help me. First, he said that we should meet after I started the chemotherapy, so we'd know what kind of side effects I'd be dealing with. The whole point of going to see him will be to get some recommendations for complementary therapies that have been helpful in reducing side effects from modern medical techniques like chemotherapy.

Secondly, he said that many people don't have any side effects, and I should focus on that and the fact that I'll probably be just fine throughout treatment. YES. Third, he said that just in case, I should bring some ginger tea to the hospital, because they won't  have any. If I do have nausea, I should drink two strong cups. And finally, he said I should prepare myself mentally, I should, 'remember that chemo is my friend.' This from the guy who will recommend acupuncture or cranio-sacral therapy if I have negative side effects.

Chemo is my friend. That's right, chemo is my ally right now. Chemo and radiation are the help I'm getting. I mean... duh. Why didn't I think of that?

We all know that attitude and mindset influence recovery and outcomes. The hippies and the medical-industrial complex agree that if you laugh, are optimistic and hopeful, and if you stay focused on getting better, you have a better chance of a full recovery and it'll happen more quickly. But I was somehow missing the piece where you use the positive attitude to think about the treatment as a good thing.

A friend of mine sent me a story that I'm going to summarize here but have posted in full elsewhere (I hope that's cool with my friend).

A Sudanese woman refugee who suffered atrocities and walked across the Sahara to Kenya with her children arrived at a refugee camp and learned that she had tumors in both her breasts. As a result she was fast-tracked for asylum in the US and received a double mastectomy. She is alive and well today because of breast cancer. I encourage you to read the whole story, but for now, let's just remember that some people have it worse, some people have it better, and cancer and treatment can be anything.

I've mentioned that I'm not afraid of treatment or cancer. But it's more than that, I guess, I'm also glad that I'm getting the treatment that is available to me, so I can get better. Here's to 6 (or 7) weeks of chemical cocktails and irradiation. Let it be mild and successful.

Saturday, March 23, 2013

Frozen Egg Insurance (Also Known as Our Personal Easter)

So we finally reached out for financial help from our far-flung community and froze some eggs. Asking for support was a good idea. The oncological psychologist had encouraged me to ask for financial help from family and friends if we needed it, and at the time I'd felt relieved by her confidence. It is hard for me to ask for financial help. But she said the last thing I should be worrying about is money - and she was right.

Not only did this help us financially, but we were flooded with messages of support, love, and enthusiasm. Some of the things people wrote are still ringing confidently in my ears, reminding me that I am strong, brave, capable and not anywhere close to alone. These are powerful feelings.

For about 10 days, Joshua injected me with hormones twice a day. He used to be a shepherd and, having injected thousands and thousands of sheep, he is confident with a needle. I told him that I am not a sheep and probably the sheep can't give feedback about how the injections feel. He reminded me that not being able to speak is not the same as being incapable of feedback. He did a very good job with all those needles. For the procedure to remove the eggs, I got to go under again, and when I woke up the doctors had used a big needle to pull out 5 viable, and now frozen, eggs. Insurance.

This is not only baby-making insurance. For us, the decision was almost more psychological. We could not make a different decision. The other choice was to decide that we'd leave it all up in the air. There was this awful possibility of knowing, in the future, that frozen eggs would have been the only option. Having the choice to decide later meant foregoing the pain of giving up now. It was a huge relief. Plus it gave us a fun type of doctor visit, a hopeful and positive doctor visit. Very different from the rest. And of course our friends told us things like, 'anything I can do to help the possibility of a Ram-oshua baby on the world is a good investment.' Thank you for the smiles and happiness.

Of course, sadly, dramatically, having some eggs on ice does not mean we will be having babies. There are many uncertainties. First, there's the obvious possibility that when they defrost, the eggs will break. Or that they will not implant in the uterus. There is also the radiation that will almost certainly damage my uterus. I may be able to get pregnant, but the damage from the radiation makes the uterus not as flexible, making twins a terrible idea. The uterus may not be able to grow to support even one full-term baby. Pregnancy could present more and bigger risks than usual.

Nonetheless, they are a sign of hope and optimism, things that a cancer patient needs in order to deal with the rest. One less thing to be sad and sorry about, one less depressing certainty. 

Friday, March 22, 2013

Post-Op News and Blues

Altes Museum Berlin
There is a reason that radical surgery is recommended for vaginal cancer, many cancers; the surgeon cannot see all the cancer cells, and if they leave just one behind it can turn into another tumor or travel and create a metastasis somewhere else in the body. There are many reasons why radical surgery is not always the best option; patients are not just surviving cancer treatment, we are living long lives and we have other priorities beyond pure survival. Like sex, for vaginal cancer patients who may live another 60 years.

I'll qualify by pointing out that throughout this process we have chosen treatment options that prioritize success and survival over everything else, but with an eye for options that make sure I'm not being over-treated.

For example, the pathology post-op showed that one of the removed lymph nodes tested positive for cancer cells, which means I have to undergo pelvic radiation. This would be true no matter how many organs were removed. More surgery is not always better, and for me it would have been a waste.

My surgeon removed the obviously cancerous tissue in the vaginal wall, knowing that I would most likely have to undergo radiation because there's no guarantee he'd get everything. He said later, only to Joshua, that during surgery he knew that the textbook thing to do would be remove everything (vagina, cervix, uterus), but he just couldn't do it. He wanted to give me a chance, and that is a phrase he said to me many times. Not just a chance to survive, but a chance to live.

The cancer treatment textbook is still being written and re-written all the time, especially for rare cancers like vaginal cancer. During the 1950s and '60s, surgeons went farther and farther with radical surgery until they were disabling people. It took a long time for them to realize that the success of surgery has more to do with the stage of the cancer than how much tissue is removed.

While I was recovering from surgery, I was not told about the pathology report. Poor Joshua was, however, and he suffered to keep it a secret so I could heal in ignorance. My surgeon also suffered while he kept it a secret and he would stop by, ask how I was doing, and rush off again. Both of them were visibly relieved when we finally talked about everything.

When I was mostly better, I had a visit from an oncological psychologist. She was smart, funny, sensitive, and just the way you want a psychologist to be: a concerned friend with no investment in anything but my recovery and health. She helped me to clarify some things, even before I knew they'd need to be clarified.

After my first weekend back at home, we went to the hospital and my surgeon finally sat me down and told me about the results. Besides the one lymph node, pathology post-op revealed that there were definitely additional cancer cells in the vaginal wall. They call this "no clear margin", which refers to the edges of the tissue that was removed. If there are no cancer cells towards the edges of removed tissue, there's a clear margin of where they had grown and where they were not. I had a clear margin on one side, but not the other. The surgeon said I could have the rest out in another surgery plus radiation, or opt for radiation and low dose chemotherapy. Option 2, thank you.

DRK-Klinikum-Westend (surgery hospital)
I asked my surgeon if he'd be writing a paper about me. He said that, yeah, if I go for one year without a recurrence, he'll get his PhD from me. I told him I wanted my name on that paper as a contributing author and he gave me a high-five. It's good to have post-cancer treatment goals.

He also told me that my fertility was likely to be compromised by pelvic radiation. He said there was still a chance I could get pregnant, but that I might want to freeze some eggs. I had never imagined wanting to do such a thing. Poor little frozen egg, popsicle potential babies. We went home to think about it. We didn't have much time, because the egg producing and freezing takes about 2 weeks, and I needed to get moving on the radiation planning as well.

I always thought that if we wanted to have kids, Joshua and I would be able to. Last year we talked about trying to get pregnant this year. At the same time, I never thought of myself as someone whose life would be incomplete if I didn't have babies.

So I was stunned to find myself completely breaking down at the thought of not freezing some eggs, just in case. I could not handle the thought of letting go of that option. With everything that had happened, it was too much to decide that we'd just wait and see if we could have babies later on. Egg freezing was the only choice we could make.

Our next meeting was with a radiologist, and it was tough. His bedside manner was not the gentle and sympathetic manner we were used to. Instead he gave us a grim picture of the situation. The most fascinating thing was that he didn't tell us anything new, it was just the way he said it. He implied that freezing eggs wouldn't be worth it, because there was a good chance that we wouldn't be able to use them, except with a surrogate, which is illegal in Germany. He reminded me that the only thing that mattered was that I live, so I should just forget about having children and focus on cancer. And he seemed to think that having radical surgery was the best option. I'll live, who cares how I'll feel?

He also told us that we could always just adopt, as if that's no big deal and a perfect substitute for having a baby myself. I've always thought about adoption, Joshua and I talked about adoption before we knew I had cancer. But that's a different conversation altogether. I'm going to write a whole blog post just about adoption, no doubt about it. But after that comment about adoption, I felt like this was a radiologist I never wanted to see again. He was insensitive, the way he talked about possible problems felt like he was making threats, and he did not think about anything but 'kill the cancer'. This is the attitude that all oncologists used to have, and I plopped him into the part of my brain where I store depressing relics of times past. Go be with the leeches. Good bye.

Many rides on the U-bahn
However, he did do us the favor of referring us to someone else to talk to, an oncologist who knew about my case (all these doctors work together to come up with treatment plans for cancer cases at the hospital). Our meeting with this doctor was altogether different. Again, he gave us the same information about the situation as the surgeon and the radiologist, but it came across so differently that we left feeling like he'd given us the opposite news. The only difference, besides his attitude and manner, was that he gave me equal odds with either treatment option, while the radiologist had given me slightly better odds with surgery.

Essentially, we're looking at a very good chance that after either procedure - surgery/radiation or radiation/chemo - I would be cancer free (80-90%). There are no guarantees, of course, but this is meant to be curative treatment. My fertility would be compromised, but nobody would say to what extent. The fact that my ovaries had been moved out of the way was great. Frozen egg insurance left lots of doors unlocked, at least. But my uterus was another question altogether.

Charité Virchow (radiation/chemotherapy hospital)
For the next stage of treatment, I had to decide whether I wanted to have the pelvic radiation in a different hospital than where I'd have a more focused radiotherapy called brachytherapy. I could also have chosen to have chemo at the oncologist's office. Instead we opted to do it all in one place, which meant a big hospital where everything is grey and cement and slightly dingy looking. The good news is that it meant my radiologist would be a woman of a different generation of radiologists than the last guy. Phew!

Again, vaginal cancer treatment has no standards. Not even the staging is widely agreed upon. I am part of the giant cancer experiment going on all over the world. There is a place in Texas called MD Anderson where they are trying to get a better idea of what is the best option for women with vaginal cancer. My surgeon had seen their information. He was also talking to someone at Sloan-Kettering in New York, to see if they had more information or other ideas. I have had, quite literally, a multi-national team of gynecological oncologists contributing to this treatment plan. I may be a rat, but I am one picky rat with high expectations.

Surgery for Vaginal Cancer

My surgeon is a friendly, short Syrian who is constantly moving at an almost-run. He is very busy, but he always stops to talk if I flag him down in the hall. He answers his cell phone often, sometimes it is a patient who needs comforting, sometimes it is his boss asking where he is, they need to meet with another patient. But he always takes the time, even when he can't. The only time he doesn't answer his phone is when he's in the operating room.

His English is touched by both a Syrian and a German accent and all the things he says sound lyrical like Arabic at the same time as they are truncated like German.

"This might be, a little bit, not the most comfortable thing."

At first he and the head of the department gave me a dual examination and took more biopsies, to make sure it was not cervical cancer that had spread to the vaginal wall - much more common.

"If this is only a vaginal carcinom, it is like a skin cancer, we remove the cells and it is good."

"Yes, I see you after Monday, on Thursday - no? - Tuesday, yes Tuesday."

After the results came back again as vaginal carcinoma, nothing on the cervix, we made a plan for surgery. He said that it would be important to do it soon and he hoped that it would only be surgery. But there was the chance that I would need some adjuvant radiation afterwards.

"Normally, the surgery would be radical hysterectomy and the cervix and vagina would be removed... But you are so young."

"With an older patient, over 50 or 60, after menopause, we do radical hysterectomy."

"Also, the lymph nodes. I will do this laparoscopically and take about four-uh-fifteen lymph nodes from each side. It is possible to have some edema, this is pooling of fluid, in the legs, but maybe not. Maybe it is painful or maybe you are okay."

He had some other surprises in store. Sentinal node testing, where radioactive isotopes are injected directly into the tumor. A few hours later, they take some images to see if the isotopes have moved into the lymph nodes. If yes, the cancer has linked into the lymph system. If no, maybe it's still stationary.

"Before, we do a Nuklearmedizin to see if there is a movement to the lymph system. This is Monday. Then on Thursday - no, Tuesday you must have a colonoscopy to see if there is any irregularities in the colon. I am sorry, we must do this."

"Yes, you will of course be asleep. You will talk to the anesthesiologist, she will tell you about everything."

Here's a weird thing that has happened as doctors have gotten better at curing individual cases of cancer: they have to consider what will happen to the rest of their patient's life. Until very, very recently, women with gynecological cancers were not even told that the treatment they would undergo would almost certainly make them infertile. And with diseases like vaginal cancer, it's not unusual for the entire vagina, a tubular muscle, also called the birth canal because it stretches and allows a baby to pass through during childbirth, to be removed entirely. My doctor decided not to do that, because I'm only 32, married, and probably still interested in being able to have sex. He was right about that, but his approach is not standard, it's new.

However, the surgery would make the vagina smaller and vaginal birth would be out of the question.

"After, you must, if you want to, get pregnant right away. I will do the C-section, you will come here and I will do it."

"Also, just in case of the radiation after surgery, I will move the ovaries up to here. This is also laparoscopically, so in the belly button and small incisions in the abdomen."

Often in the US, surgery for vaginal cancer is done as outpatient surgery. Even a hysterectomy can be outpatient. Not here in Germany. I have the normal public insurance plan and pay the minimum monthly amount, but I have no co-payments or deductibles and I stayed in the hospital for 10 days after surgery.

It was just like he said. On Monday I checked in and had the sentinel node testing. I stayed at the hospital that night and had a colonoscopy the next morning. Everything looked good so far. On Wednesday morning, early, I was rolled into the surgical area and promptly put to sleep. My favorite part is the fast-acting anesthetic that makes you pass out. I woke up, barely, and Joshua was there and I was in the ICU, which was planned. The night there was very loud, and I woke up once an hour, pressed the button and said "schmerzen", which means "hurts" in German, and they injected more pain killers right into my neck. I wasn't in much pain, really. But I had a hard time sleeping. The ICU is a place of alarms and buzzers and more alarms.

Then, maybe a day or two later, the doctor came by and told me everything went as well as possible. He didn't tell me much then, but he did take 27 lymph nodes and he moved my ovaries. I had two drainage bags hanging off me as well as a catheter - surprise! After a few days I was strong enough to do a bit of walking - all the way to the bathroom. The nurses took great care of me. Slowly the tubes and bags and injections were fewer and fewer, but I was taking pain killers, anti-nausea meds, and other pain killers. I probably took more medication in those 10 days than I had over the course of my entire life. 

Wednesday, March 20, 2013

Getting Up to Speed

It's been almost 3 months since I was diagnosed with cancer, and it is time for me to start a just-for-cancer blog. I'm calling it "Nobody's Cancer" because I don't like the idea of cancer being mine (it isn't). And there are relatively few cases of vaginal cancer diagnosed each year the world over, so sometimes it feels like nobody has had this kind of cancer before. All of my doctors have told me how rare vaginal cancer is. They say that they are working with imperfect information about treatments, but that they are fairly confident that I will be cured. They compare it to cervical cancer, but they are cautious.

I realized when I was diagnosed that cancer is not something that terrifies me. I was shocked, confused, frustrated, angry, and resigned to do what it would take to be cancer-free. But I have not been afraid. Neither cancer nor cancer treatment are scary to me. I think cancer is often scary. I would feel differently if I had been diagnosed with another form of cancer - say brain cancer, or one of the more tenacious bone cancers that science is still baffled by. But I'm confident that I can get through this gigantic bummer. I'll be scarred, changed, and my future has morphed into something with benchmarks and fewer options than it used to offer. And that's the stuff I want to write about. My husband and I have been forced to make choices that are very difficult to make. We've been confronted by unexpected emotions. We are very fortunate and we are devastated.

This is all I'll write for now, because I have this whole life I need to keep living. But in the meantime, there's still the Other Blog, where I describe my initial reaction and the steps my husband and I took after I was diagnosed. If you haven't yet, check out the post from Feb 17th when I announced "The News" and the Page I created a week or so later with a bit more information, called "And Cancer" (which is also a Page on this site called "First Impressions").

Since those writings, my treatment plan has changed a bit again and I start low dose chemotherapy and high dose radiation next Monday. I have a lot to say and I'm gonna say it here. The hope is that my experience will help the people I love (and that love me) to understand all of what's going on. And maybe reading about my experiences will help other people with vaginal cancer (or any form of cancer) to deal with the loss of control and change of trajectory that cancer means for many people these days.

I'll be updating this blog again soon. There is a lot to share.