Sep 2014

Maru's Cancer Tips

Here’s what I learned.
Here’s what helped.
Here are a bunch of links.
Here is my hope that this will help you or someone you love.

I was diagnosed in 2009 with endometrial cancer, FIGO grade 1, stage 4. The endometrium is the lining of the uterus. I had surgery (a hysterectomy), chemotherapy (carboplatin and taxol) and radiation (bracytherapy). My grade was low but my stage was high, and even my oncologist said this was “weird.” I was terrified, but I was brave. If you get a cancer diagnosis, you can and will be both.

If I had to call out two words, they’d be: walking and healing. Walking every day was extremely important for me, both physically and mentally. And I often felt that the mental game was more difficult than the physical one. By healing I mean you have to treat the treatment. I did everything my gynecological oncologist told me to do. I was grateful that there was a standard protocol for my cancer and I meant to cooperate fully. But I also hunted down as many things as I could find, outside the oncologist's care, that would help to get through this. That meant nutrition, acupuncture, reiki, massage, reflexology, hobbies, music -- any activity that helps. A lot of stuff is out there. But because these things are so fragmented (if you are in the United States), you have to pull them all under one umbrella yourself. And that's OK because you’ll always be the expert on what you like and the most interested party in what’s happening to you. You can tailor your activities to fit your own needs. If you don’t like acupuncture, no one will make you do it. If music, sailing or painting help you, make them medicine.

The day you get your diagnosis, you will start to search the internet like mad. You will not sleep well, if at all, that first night. But the best thing I found on my first night was this from a former cancer patient: “You won't always feel like this.” And
her assurance that the shock of the first days will pass as you start to get more information, set up a treatment plan, and settle into it. You simply cannot sustain that state of heightened alarm, and thank goodness for it. You won’t be able to think about much else for a while, and you’ll be scooping up information while you rush around to doctor visits and feeling like this has taken over every waking minute. But believe it or not, sleep will return, pockets of free time will open up, and one day you’ll hit a wall and not want or need to google your particular cancer any more.

Remember that the internet is a double-edged sword. It’s great to have so much information out there, and I hope this site falls into the helpful category, but there is a lot of stuff out there that is not so great. Some of it is scary. Some of it is downright false. Some of it is true for some but not true for you. Some of it may be misinterpreted by you at best and harmful to you at worst. Once you have informed yourself about your options, give yourself a break from it.

My Story

I moved to a new city in 2007, my father died in 2008, and I got laid off in 2009. Still, I was not unhappy. My husband and I had planned the move carefully and looked forward to the new place. My father had had a stroke four years earlier followed by a steady but gentle decline, so we were prepared. He was 81 and I’d made a point of saying everything to him I wanted to say before he went. The Great Recession was underway by 2009 and my employer had announced there would 10 to 15% reductions in every department, half a year before they made them. So although to be honest I didn’t expect to be in that number, it’s not like I was shocked or hadn’t given it any thought. None of these things was devastating. I was feeling tired after all of them, though, so I decided to take a pottery class over the summer and then start volunteering at a nearby elementary school in the fall. My husband was still working, and I’d gotten a nice package in the layoff, so I didn’t have to look for a job right away. I thought feeling tired was perfectly natural after everything that had happened. It wasn’t like I had stopped swimming or meeting up with friends or living a normal life. It just felt like I had to push a bit to do things I’d always done. I decided I’d use this newfound time to get more fit. Maybe consult with a naturopath, something I’d always wanted to do.

I found one and told her that other than feeling a bit tired, my only other issue was that I was, at 56, overdue for menopause, which turns out to be a risk factor for endometrial cancer but I had no idea. All I knew was that I wanted to get ready for it and when it came I’d do it “naturally” and peacefully. N.B.: Even if you are still having periods late, and even if your bleeding is as heavy as mine (see below), your chances are overwhelmingly that it is NOT cancer. So if my story makes you squirm a bit in recognition, be brave enough to get tested. The odds are in your favor. And if not, you need to know this so you can get on with treatment. The odds were not in my favor, but treatment worked.

I also told her that I had this nagging feeling that there was something vaguely wrong with me. I remember telling her that is was as though there was a switch that had been turned off and if we could find it and turn it back on, I’d feel better. She said we should start with a thorough physical including a blood test just to be sure everything was normal. Since my insurance didn’t cover naturopaths, she suggested I find an M.D. who was covered and have them order the blood test. Then I would bring the results back to her and we’d discuss. I wanted to get an H1N1 flu vaccine anyway, in preparation for working at the elementary school, since that was an issue in 2009 and children were supposed to be vulnerable to it. I found a little family clinic covered by my insurance and made an appointment (with a D.O., actually). I wasn’t able to get the flu shot because the state in which my new home was located had only received a limited amount of the vaccine, and that was being reserved for categories like pregnant women and cancer patients. Heh.

I got the blood test, though, and it came back severely anemic. A normal woman has a hemoglobin reading between 12 and 14 grams per deciliter (gm/dL). Mine was 6.5, and so half of that. The D.O. who’d ordered the test started me on iron supplements. I was delighted about the anemia, because that answered what was making me so tired, and now we could fix it and my problems would be over. But that doctor had seen her first red flag. She asked about my periods, which had started to become irregular and sometimes very heavy – just like all my friends’ had before their menopause set in. She was not impressed with my stories about my friends, and ordered a bunch of other tests.

I had only meant to use her so I could get the blood tests covered by my insurance. I wasn’t intending to stick around for medical shenanigans, but I was taken aback by her assertiveness and did what I was told. Thank goodness. Since she knew I was new in town, she gave me the names of a couple of gynecologists and told me to pick one and make an appointment to ask them what they thought about the results of the sonogram she’d ordered. This is how I ended up getting an endometrial biopsy. By now it was the week before Thanksgiving. Because of the holiday, the results wouldn’t be ready until the first week of December.

When I went in to get the results I had a noontime appointment. I looked down the hallway and saw the gynecologist who’d performed the biopsy leaning in her office doorway, eating a sandwich and talking to her staff. Well, I thought. I wouldn’t be able to eat a sandwich if I was about to tell someone they had cancer. So, I felt cautiously optimistic when they led me into the little room to wait for her. I hadn't factored in that this person did this for a living and diagnosed a cancer every week. She came in, closed the door, and pulled her chair up way close to mine. I knew then that I was cornered.

The cancer was low grade, slow growing, and looked to be caught early. “You’re going to be fine,” were her exact words. Endometrial cancer is the most common gynecological cancer, more common than either cervical or ovarian. You hear about those two all the time. I had never heard of endometrial. It is one of the “good” cancers to have. Caught early, it has a cure rate somewhere over 90%.

Before leaving, I was booked to meet a gynecological oncologist who would also be my surgeon. I staggered out in shock and somehow made it through the week before the appointment with him. It was horrible to enter that cancer center for the first time. Just the sign on the door. I looked around at everyone else in the waiting room and wanted to holler there’d been a mistake and I didn’t belong there. I saw a beautiful woman in a headscarf and averted my eyes. It made it all somehow worse to use the rest room and hear Christmas music piped in. Based on the pathologist’s report, the oncologist also thought we’d got it early, so early he said that when he went in to do the surgery, he might not even find any cancer since the biopsy might have taken it all. I left there amazed at my good luck. My husband and I went straight from his office to downtown for a steak dinner, to get the iron in red meat, and to celebrate.

A lot of things began to happen. Surgery had to be scheduled for after the Christmas holidays because of staffing. While I waited, I landed in the emergency room twice with copious bleeding. The second time, on Christmas Eve, they transfused two units of blood. While they were doing the transfusion into one arm, they also gave me a pneumonia vaccine. Then they came up on the other arm and gave me a flu shot. So there you go, I got one after all.

A week before surgery they did a CT scan that indicated that the cancer might have metastasized. When the surgery was performed, this was proven to be true. My cancer wasn’t so lucky anymore, and the fall in fortune felt like being dropped from a high diving board onto cement. There were tumors on the outside of the uterus, and one of those had stuck onto my omentum (an organ nearby in the abdomen). This got me labelled stage 4 and, according to statistics, my percentages for surviving five more years were now well below 50/50. Statistics aren’t the whole story, and I would come to know that well, but it is hard to ignore them when you’re deep in something like this. Anyway, the surgeon got everything he saw. Now we had to worry about anything too microscopic to have been seen, and we knew it had gotten out and around. So there followed six months of chemotherapy followed by radiation (brachytherapy).

When it was all finished, I had another CT scan. None of the suspicious things in the first CT were there anymore, “completely resolved.” Yay! But. There were two new symmetrical patches of “haziness” in a place where there hadn’t been anything before. Only a PET scan three months later would show definitively if these were cancer or something else. The newly suspicious places were where he’d cut me, and the haziness could just be inflammation where the healing from the surgery was taking place. I was well schooled by now that luck can go either way, so I had to wait and see.

It was a long, difficult summer. Come the day in September, it was a terrible wait in the little sweat box of a room where you have to sit until the doctor comes to tell you the results of the PET. The scan was all clear, and has been clear ever since. As I write this, I am over four years out from the end of treatment and my oncologist illustrated my chance of recurrence, if it were a graph line, by making a gesture with his hand as though going off a cliff and dropping like a stone. This time the long drop results in a happy landing that positions me for a life goal I saw on a bumper sticker: Planning to become an old lady with cats. ###

Photo credit my own.