I heard once that the first thing you're supposed to do when you're diagnosed with cancer is go to the dentist. Cleaning, fillings, whatever - just do it. Your immune system spends a lot of energy keeping your mouth healthy (because without it, no food) and it is important to re-focus any immune energy to help get through cancer, treatment, recovery.
I don't know if that's actually true, but nobody has recommended that I go to the dentist. I'm going anyway.
The first thing that happened to me when I was diagnosed was that the world went into tilt-shift. Life felt sharply in focus, and yet farther away. Things that used to be normal felt like they were happening at a great distance. Reactions slowed down, anger seemed pointless, and every fun moment felt like a treasure. At least, during the first couple of days.
I was diagnosed with adenocarcinoma between Christmas and New Year's of 2012, via email. My doctor knew I was in the US - he was on the island of Menorca, Spain - and he knew that I would not be treated on Menorca. He said the next step would be more testing and then a treatment plan, and all that should happen in one place. We had just become German residents about four months earlier, so we had mandatory health insurance. You pay those monthly premiums, amounts dictated only by the size of your salary, and then you get treated without spending a cent. No deductibles, no raised rates, no cancellations of policies due to technicalities. In fact, even if I stopped paying premiums they would continue to cover me. It's the law.
And thank goodness. The last thing you want to worry about when you're facing a life threatening disease is the prospect of financial disaster. I cannot imagine filling out loan paperwork right now.
I find myself thinking this a lot, even though it seems strange under the circumstances: I am so fortunate.
I was diagnosed at a time when I was free to travel and plan in a way that would allow me to be treated immediately. I have health insurance under a system that is designed to protect people from facing unrealistic financial burdens to keep themselves healthy and alive, and that recognizes that psychological, emotional, and physical health are intertwined. My job is flexible and I have an understanding boss as well as someone I can rely on to back me up when I need to take time. I am married to a tirelessly loving hero.
When I told Joshua about the email from Menorca, I was crying. I had waited less than 24 hours to tell him, just letting it sink in, but I didn't know what it meant. Adenocarcinoma? I looked it up and all I could find is that it's a glandular type of cancer. Glandular? How much is there, what will treatment be like, what stage? I had no answers and many questions. I was terrified of telling my parents, and I knew that telling my sister would be good, but hard. I felt that I was putting a scary, sad, and unfair burden on these people who I love the most and want to protect. But they, and many others, have helped me to carry the burden and it is the thing that keeps me feeling strong and determined. Cancer is a burden that should be shared as widely as possible - taking the weight off has been cathartic and the resulting support from each person I've told has made me overwhelmingly happy.
Rather than keeping my sad news inside, I quickly got into the habit of breaking the news to people whose help I wanted to enlist or whose love and support I needed. I perfected my message. "I have a little bit of cancer, that's why we're going to Berlin instead of back to Spain. I really don't know anything else yet, but I will keep you updated."
Some friends have had invaluable information about typical treatment and recovery. Others have helped us to make the decision of small hospital or huge, famous hospital attached to a big university. Understanding the system in Germany wasn't going to happen socially or experientially, the way it has for us in the US. Fortunately, we had friends who could talk to us about the fact that everyone is entitled to the same high quality care, so no matter where we went we would have top quality resources. Every hospital in Germany, public or private, is linked in some way to a university, so that information keeps flowing about new studies and best practices. While there is competition, and some hospitals spend more money on advertising or have won awards, care and technology everywhere is at the same high level. And if you can't get the treatment you need locally, you are sent to a place where you can get what you need.
Once in Berlin, we got started quickly. First, I needed a gynecologist who could refer us to a hospital. I used Toytown Germany to find Dr. Matthies - a woman who has the perfect amount of English skill and a calm, even temper. She saw me during consultation hours, because an actual appointment wasn't available until a week later. She said she'd like to take a look, after seeing my Spanish paperwork, and she said she might as well take a biopsy, something the hospital would want anyway.
A few days later, the results came back as vaginal carcinoma - different from that first result. She said it was likely that this is better, overall. And she made an appointment for me at DRK-Klinikum-Westend, a small hospital with old brick buildings that reminded me of going to college in New England at Mt. Holyoke.
Dr. Hartmann, the head of the Frauenklinik, and Dr. Halwani, the man who would be my surgeon and doctor, met with us to discuss the results of that second biopsy. They were cautious at first, figuring out if we were all "the family" here in Berlin and whether Dr. Matthies had told us everything. We were relaxed and informed, and when they asked if I drink alcohol my response was, "not anymooore." We all laughed a bit and the tone changed.
They said they wanted to make especially certain that the lab results were correct. They wanted to do another set of biopsies, one of the tumor and one of the cervix. Usually, vaginal carcinoma starts off as cervical cancer, and then metastasizes to the vaginal wall. Nothing about my case would turn out to be the usual.
The results came back the same as the second biopsy - vaginal carcinoma, and only on the vaginal wall, not the cervix. Further testing, including an MRI, chest x-ray, colonoscopy, showed that it had not spread to surrounding tissues, was just at the 3cm size that determines that they should remove some lymph nodes, and that there is so far no metastases in my lungs. They scheduled me for surgery the following week and removed the tissue as well as 27 lymph nodes. Dr. Halwani also moved my ovaries up and outward, so that they would be out of the direct line of fire, should I need radiation (a procedure that almost nobody in Berlin knows how to do). I spent 10 days in the hospital all together. One little lymph node tested positive for cancer.
Next Treatment Steps
Not only were there cancerous cells in one lymph node, but the pathology post-op says these cells are ready to move. This cancer is tenacious, aggressive, invasive, and there's more business to be done. My doctor says there are two ways forward. The first is the radical surgery method. I go back into the hospital and this time he takes out the entire vagina as well as the cervix and performs a hysterectomy. But he doesn't prefer that option. He wants to give me a chance, he says. He keeps telling me I am young and the psychological side of radical surgery is important to consider, not to mention the physical effect of losing my hormone producing organs or my options for having children.
So we're taking the other option: radiation, both internal (brachytherapy) and external, along with what he termed "baby doses" of chemotherapy. The chemo will just weaken the cancer cells and help to make the radiation that much more effective. Nothing is guaranteed in cancer treatment. There isn't much in the way of data about vaginal cancer. I may complete the radiation and still have to have radical surgery. But at least this way we know we tried everything we could.
This type of cancer is more likely to spread locally than anything else. That means the concern is not that it will metastasize to my bones or blood or lungs right now, but that it will spread to my bladder and rectum. So I think we should go ahead and blast the cancer cells with some lasers and poisons.
Three Months from Now
Radiation in that area of my body is highly likely to effect my fertility. The treatment will last for about 6 or 7 weeks. Radiation and chemotherapy once a week until the radiologist says I'm okay. I will go to the hospital, have treatment, and go home - I should be able to continue with life almost as usual. Side effects should be minimal, although I can expect to be very, very tired.
After that is done, it'll be another six weeks before they can test to see if my hormone levels would support a natural pregnancy. We are considering what it will mean if the answer is no. And our option for keeping the door open is freezing eggs, something that would happen early next week. This is the biggest question we've had to face with little time to mull it over.
Having a little bit of hope is so much better than feeling like we have no choice at all. Both Joshua and I are sad. We want children. We also never wanted to force it or take dramatic medical steps in order to have children - we always assumed we wouldn't have to think about kids in this way. We've even talked about adopting, regardless of fertility issues. But when I think about not having the option, I can't stand it. For peace of mind, and to avoid emotional and psychological anguish, we're going to freeze some eggs. It will not be free, but with a little help we're going to manage it.
If we do this, the option will be there, and that makes dealing with the rest of right now that much easier. We need to do the things that make our current life easier.
If you have questions, like we have had, please ask. If you want to do something to help, know that every email and card we've received has brightened our days. Cash is in tight supply, so if you've considered buying something in my Etsy shop, now would be an excellent time. I've been knitting a lot, while listening to new, upbeat, and sometimes cancer-banishing music, as well as reading some excellent books (The Emperor of All Maladies, Shantaram) and watching my favorite sick-in-bed movies (The Sound of Music, Amelie), thanks to those of you who sent gift cards. These little treats, and the thoughtfulness of family and friends, bring a disproportionate amount of happiness into our somewhat heavy world. We couldn't be more grateful.
We're still buying flowers to keep our spirits up, Joshua is cooking fantastic, lovely, healthy food, I'm taking immune boosting supplements and treating myself to goodies so that I don't feel any sorrier for myself than I already do. (I refuse to deny myself the pleasure of a few cookies or pieces of chocolate at a time like this). And in about three months we'll have a different set of answers and probably more questions about things we never wondered about before.
Future updates are going to be available here: http://nobodyscancer.blogspot.com.