Thinking about cancer today

Warning:  Graphic photos of my scar - don't look if you don't want to be grossed out.


It's coming up on 4 months since I went to the hospital with excruciating abdominal pain and ended up with emergency surgery and the diagnosis of ovarian cancer.  It's been an emotional roller coaster ever since.

 After some scans in the ER, the attending gynecologist told me that I had a large cyst on my ovary and that it had caused a torsion, which was causing the intense pain.  He told me it was probably not cancer, but that they were going to have a gynecologic oncologist on hand, just on the off chance that it was cancer.  If the cyst  was malignant, they would most likely remove my other ovary, fallopian tubes, and possibly the uterus.  I agreed (in my fog of pain and dilaudid) that this was okay with me.  I just wanted the pain to be gone.  At that point I would have agreed to have my whole torso cut off.

The next thing I remember is waking up in the recovery room surrounded by my husband, my mother, my sister, my best friend, and possibly others.  The first question out of my mouth- "Was it cancer?"  Someone, I think it was my mom, said, "Yes."  I vaguely remember the surgeon coming over and telling me all the things they removed- both ovaries, fallopian tubes, uterus, cervix, appendix, omentum, and several lymph nodes.  They also found an umbilical hernia and fixed that while they were in there.  The incision went from the bottom of my sternum all the way down to my pubic bone.  I was told that I had a very large tumor on my left ovary and some spread to the right ovary.  They took out all the other things because ovarian cancer usually spreads to these areas.  The surgeon told me and my family that it was an aggressive type of cancer and that I would need chemotherapy, which would start in about 5 weeks.

The surgery was on a Sunday night.  By Wednesday evening, I was ready to get out of the hospital and get home to my own bed and real food.  Friends and family visiting, bringing food, bringing flowers, bringing books and other gifts and lots and lots of cards were what got me through those first few weeks.  I can never thank them enough.

Part of my cancer posse with their teal ribbon shirts.

I can never thank my sisters and mom enough for taking care of me and taking care of my children and my house when I couldn't do it.  If not for them, this whole period of my life would have been much, much worse.

Not everything went smoothly, though.   The first night home I threw up.  Probably from eating too much real food after eating almost nothing at the hospital.  Possibly from the horrible Vicodin, which I didn't take anymore.  I stuck to Advil after that, which if you take a look at the incision, you can see that Advil was not quite enough, so I was pretty uncomfortable.

Here's a self portrait, looking pathetic, propped up in the recliner chair we made Michael drag back into my room.

We had some fighting and arguing about what to do.  I didn't want to try to get my pathology report while I was still just trying to get out of bed and move around a little each day.  I wanted to heal enough, so that if the pathology report was really bad news, I wouldn't burst my staples out with crying.  Some people wanted to get the pathology report ASAP so that we could start researching what to do.  Everything hinges on that pathology report.  Ovarian cancer is a pretty generic term.  There are several different types and different levels of each type of ovarian cancer.  The treatments  and prognosis can vary widely depending on the type and aggressiveness of the cancer.

Well, here's what I was trying to heal up before finding out the bad news:

Before getting staples out- about 1 week after surgery

After staples out- about 4 weeks after surgery, keloids starting to form.

About 2 weeks after my surgery, I went for a check up to have the staples removed.  I was actually healing up quite nicely, and was feeling rather well, under the circumstances.  At that appointment, the nurse practitioner was able to print off the preliminary pathology report, which had been performed by the hospital's general pathologist.  It was not the final report, because the samples were being sent to the main Cleveland Clinic campus to be reviewed by a gynecologic oncology pathologist.

The news from the pathology report was pretty good.  Not nearly as bad as the surgeon had led us to believe.  The tumor had been enormous- 17 cm X 15 cm X 9 cm and classified as serous adenocarcinoma.  Not great, but not the worst kind, either. The best part was that it wasn't a fast growing kind.  It was actually a low grade tumor, which meant that it wasn't very aggressive after all.  We could all finally breathe a little sigh of relief.  That report also showed that it hadn't spread anywhere except to the right ovary, which was also a relief. The lymph nodes being clear was the biggest relief of all.

Things were starting to look up- until a week later when I went to see the surgeon/oncologist that performed my surgery.  To say that we had a clash of personalities would be an understatement.  I left that office feeling violated and abused and hopeless and angry and discouraged and disgusted and a whole bunch of other emotions which I can't even remember.  In his dismissive and arrogant way, he discussed "the protocol"  with me.  Well, you can't actually call it a discussion- more like Nellie and I asking questions and he rudely ignoring them while saying a bunch of bull shit and trying to get us out of there as quickly as possible so he could go to lunch.   Anyway, "the protocol" (a word he repeated at least 20 times in our 15 minute visit) was to consist of my getting doses of carboplatin and taxol intravenously every 3 weeks for a total of 6 sessions.  After that, I would go for periodic check ups to have my CA 125 (a marker in the blood that can indicate cancer) level checked to make sure it was in the normal range.  He hadn't read my pathology report in full. He actually sat there glancing through it for the first 3 minutes of our meeting.  He was just telling me what they "DO" in these situations and assuming I would just accept that because he said so.

At first, I felt bad, but then I just got angry and thought, "You need to know with whom you're dealing, Dr.  Macho!"

Weee-lllll, after much anguish and torment, and calling and talking to one of the nurse practitioners, I decided to change over to another gyno oncologist in the practice.  When Dr. Macho found out about it, he actually called me at home.  He wanted to know why I was switching, and I told him exactly why.  He already knew some of what I said, because I had talked to the nurse about it.  So, I'm assuming he was forced to call me, but I must say that he did apologize for making me uncomfortable, and told me that if it were his wife in my situation, he would want her to feel at ease with her choice of doctor.  I have to say that although I still think we would never get along in a million years, I respected him for apologizing to me.

He then went on to tell me that he had received the final pathology report and the tumor board had just discussed it that morning.  Based on what he had seen in surgery, he was very surprised to find out that it was a low grade tumor.  He told me that it was both good and bad.  The good news was that it could take a very long time for the tumor to grow back. The bad news was that chemo was not very effective on these types of tumors.  So I asked if they still recommended chemo, then.  He said that yes they did still recommend it because there was like a 30% benefit to doing it.  Not wanting to get into a long conversation with him, I let it go and figured I'd ask the other oncologist about it.

Meanwhile, my mom, my sisters, my husband, my best friend and I had all been reading everything we could get our hands on about ovarian cancer.  The Gathering Place library was a good resource.  The Gathering Place is super awesome all around.  I felt pretty confident that I knew as much as I could possibly know before meeting with the second oncologist.  And, before meeting with him, I had pretty much decided that I was not going to do chemo.  I couldn't find any article or book which said that chemo was an effective method of treating low grade carcinomas.  It appears that they just do chemo because there is no better treatment, so they throw something at the cancer to make it seem like they are doing something about it. I told my family that I was thinking about not doing the chemo.  Everyone said it was my decision, but most of them thought I should probably go along with what the doctor said.

So, the next week, I met with the second gynecologic oncologist (whom I'd met briefly on rounds during my hospital stay).  Although still somewhat on the arrogant surgeony side, he was MUCH easier to talk with and did not send my jerk-o-meter into overdrive.  I asked him many, many questions.  So did Nellie.  He answered every one, although you could tell that he thought we were a little over the top with the questions. He still didn't act dismissive of us, though, which was great.  He was thorough in his answers and I felt reassured that I had made the right choice to switch doctors.

However, after talking with him, I was once again back to being very frightened.  It seems my final pathology report wasn't quite as rosy as the first had been.  Not only had the cancer spread to the right ovary, it had spread to the left fallopian tube and they found cells in the peritoneal washings.  So, instead of being stage 1C as we originally thought, I was actually at a Stage 2.  Also, the way he described the kind of cancer cells I had was very graphic and creepy.  I imagined them looking something like this:

Scary, no?

I confirmed with him that there were no other treatments beside chemo, nor were there any current trial studies for which I was eligible.  I asked him about the 30% benefit that Dr. Macho had mentioned.  He said that 30% of women in my situation who had the chemo did not experience a recurrence in 5 years.  So, that means 70% do have a recurrence in 5 years.  Ooooo-kay.   Hmmmm.  I asked if there were stats on the women with my diagnosis who choose not to do chemo.  He said there weren't enough cases for those stats.  So, basically, it could be exactly the same as those who do have the chemo.  No one knows.  I was very lucky to have my tumor discovered at stage 2.  Most often, this type of cancer is not discovered until it has spread all over and is then pretty much impossible to beat.

Learning that there were more cancerous areas than I'd originally thought terrified me.  Instead of telling him that I didn't want to do chemo, I let them show me all around the chemo section and I spoke with the chemo nurse, and set up an appointment for my first chemo session. I kind of decided on the spot that I should probably do the chemo, just in case.  Maybe those crazy, ugly cells would be afraid of the poisonous toxins. I know I was.

So, I came home and told everyone that I was doing the chemo after all.  Except, that night, I couldn't sleep at all.  The nagging thoughts about all the other stuff I had read prior to my visit with Onco-Gyn #2 came flooding back. So, I got back on the computer and read some more stuff.  It confirmed my prior position that chemo was probably not the best choice for me.  I mean, really.  Why would I put my body through the physical torture of chemo when I was barely healed from a major, traumatic surgery, when there is only a 30% chance that it would give me 5 years cancer free?  So, I changed my mind back again, then dealt with the agony of telling everyone again that I wasn't going to do the chemo after all.  By this time, a couple more people had read the stuff I read, and agreed that it didn't really make sense to do the chemo, even though that's what the doctors wanted me to do.

I'm really not one who likes to rock the boat, so I was experiencing great trepidation about calling the doctor back and canceling the chemo.  I mean, I'd already gone rogue and demanded a new doctor.  I didn't want to be that pain in the ass person who always has to do things her own way.

"Can't somebody else do this for me?  I don't want to have to call that place again . . ."

About 3 days before I was supposed to go in, I  finally got up the courage to call and tell them I wasn't going to do the chemo after all.  When I called, I spoke with the chemo nurse, and when I told her I changed my mind, she said in a nonchalant voice, "Well, that makes sense since you have a low grade tumor."  WHAT?!?!?  That's not what I expected to hear.  She told me she'd tell the doctor and let me know what he said.  She called me back a few minutes later, and he was like, "Okay, no prob.  Make an appointment for 3 months from now, and we'll check how you're doing."  SERIOUSLY?
That was it.  I hadn't needed to be so worried about calling them.  Even they knew that chemo was a ridiculous and pointless attempt at treatment for this type of tumor.

Even though I'm still scared to death about the cancer, and I'm facing my first check up after declining chemo, I'm also 100% sure that I made the right decision.  If I'd gone the chemo route, I'd be sitting here with no hair on a 22°F day, feeling sick and miserable.  Instead, I chose a different route.  I chose to do other things about which I may blog when it's not so cold and my fingers aren't so freezing.  But mainly, I resolved to try to live as healthily as possible for however long I have to do so.

It had better be a long time, because there are SO many books we haven't read, yet!

I feel good, people tell me I look good.  I'm just living my life day to day and trying to keep the negative thoughts at bay. Looking forward to April, when I have 2 weekend getaways and celebrate my 44th birthday.  And hopefully, the weather will be much improved.