Lessons Learned from my Brain Tumor, part 4

If you need to catch up, you can read part One, Two and Three of the story by clicking the links.

In the fall of 2002, when I finished my six weeks of daily radiation treatments, I thought my brain tumor story was over. I had just completed the most difficult time of my life, and except for the little bit of radiation sickness that came on at the tail end of the treatments and the slight hair loss I experienced, I was feeling better than ever before. For the first time ever, I experienced hours, and even whole days when I didn’t have a migraine. And I discovered that there are, in fact, headaches for which a Tylenol will actually work! After all these years, thinking that Tylenol only worked because of the placebo effect, I realized that even the “slight headaches” I’d been experiencing for years were migraines strong enough to make grown men cry. It was what I’d gotten used to, and I didn’t realize how bad the pain was until it wasn’t my constant companion anymore.

My doctors were pleasantly surprised to find that the radiation didn’t simply stop the tumor from getting bigger. It actually shrunk in size! I was better, and this difficult journey wasn’t even as hard as I’d expected it to be!

Sure, I’d have to go in for follow-ups ever few months, so the doctors could monitor my symptoms and scan my brain and make sure I was still doing fine, but that was nothing. I no longer had dizzy spells and headaches, nausea and vision problems to deal with. And I knew I’d only continue to get better from this point on.

Obviously.

Because my tumor was the benign kind. Not cancer. So once it started behaving, I wouldn’t have to worry about it anymore. Right?

Sigh. Wouldn’t it be nice if life worked out that way?

 

In July of 2004, when our fourth child was only a few months old, my husband was sent to Korea for a year with the Air Force, leaving us behind in California. By this time, some of my symptoms had returned, but the tumor was still holding steady on the scans, so I wasn’t worried. Phil (my husband) and my doctors, however, were concerned. Sure, I was managing my symptoms just fine, with Phil’s help and support, but I had a brand-new baby and three other children (ages 2, 4 and 6). What if I started having blackouts again? What if the tumor started growing? What if I needed help and I was all alone?

My doctors, my husband, and several of his commanding officers wrote letters to request that his orders be cancelled. He was needed at home, and I shouldn’t be left alone, they all argued. Especially not for a full year. And everyone, all the way up to the group commander, was certain that the Air Force would see the error of their ways and tell Phil to stay home.

Until two weeks before his report date, when the request was denied.

“If your wife needs care in your absence, you should hire a live-in nurse to care for her,” the email said. And Phil went to live in Korea for a year, while I stayed back in California with four small children and a calendar full of doctor’s appointments.

And it was difficult, but I had friends to help me through, and I made it through the year with only a few scary moments. I discovered that I was still strong enough to deal with this brain tumor, even when my husband could only support me through phone calls and video chats.

Phil returned from Korea in July of 2005, and I heaved a giant sigh of relief. I made it through a year without him, and nothing major happened. My tumor was still behaving itself. Life was good. I turned the kids over to Phil for a few days and went to spend time with some friends. And then we settled into a peaceful, low-stress routine, happy in the knowledge that we were strong enough to make it through anything. And I wasn’t going to self-destruct.

 

Then, in early October 2006, I had a massive dizzy spell while grocery shopping. And then the blackouts started again. And the breathing troubles. And the vision problems.

And then, the MRI showed that the tumor was growing again.

My primary care doctor (Dr. O’Donnell at UC Davis – I was no longer even going to the military clinic for routine illnesses by this time) suggested that we consider the possibility of surgery.

But wait! Didn’t they tell me, back in 2002, when they discovered this thing, that they didn’t even want to biopsy it because it was too risky? What would happen to me if they cut me open and started poking around in there? Sure, the symptoms were horrible, but what if the surgery made things worse?

Dr. O’Donnell assured me that it was my best option at this point, and he referred me to Dr. Boggan.

And I already knew who Dr. Boggan was.

Way back in my first week of radiation treatments, I had met another brain tumor patient one day, while waiting in the lab to have my blood drawn. We started chatting, because that’s what you do, and this man asked if I was planning for surgery sometime in the future. I told him no, of course not. My tumor couldn’t be operated on. It was in the brain stem, and all of the doctors agreed that the unique placement of the tumor made the idea of surgery much too risky. Turns out, his tumor was in the same spot on the brain stem (what are the odds??), and most doctors didn’t want to risk surgery, but when the tumor started growing too big to deal with in any other way, they had referred him to Dr. Boggan. “Ask about him, if you ever have to consider surgery,” this guy told me. “He’s really good. I came through the surgery perfectly fine. I only lost feeling in one hand.”

Way back then, I had listened to this other patient with growing horror. The dangers of surgery were 100% confirmed. I’d never even consider surgery. But now, four years later, I realized that surgery was my only option. And once again, the Lord had placed me in the care of the best doctor available for this type of surgery. After lots of fasting and prayer, and a few Priesthood blessings, we decided to move forward with the surgery. And I wasn’t scared. Much.

I knew that everything would be all right. I was certain that I would come through the surgery with no problems. I still had work to do, after all. It wasn’t my time. And even when one of my best friends (who was totally convinced that I was going to die on the operating table) insisted that I should write goodbye letters to my children before going in for surgery, “just in case,” I wasn’t scared. After all, I went through radiation treatments without substantial hair loss or radiation sickness, my tumor shrunk with the radiation, when the most they were hoping for was to slow the growth, and even with my renewed symptoms, I still felt better than I did before they found the tumor back in 2002. Surgery was going to be a piece of cake.

And it was. Kind of.

When Dr. Boggan got into my head, he discovered that my tumor was actually much bigger than it had appeared on the scans. In fact, the growth that they had been monitoring on the scans wasn’t even the actual tumor. It was a calcification that had grown in the center of the tumor. My tumor was a thin membrane that had grown over and around the brain, molding itself to actual brain tissue and becoming virtually invisible to scans. My two-hour surgery turned into a nine-hour ordeal, and by the time they had to stop, they were only able to get 60% of the tumor.

But they got 60% of it! And I was alive. And what more can you ask for, really?

Yes, there were complications. I woke from the surgery and discovered that I couldn’t feel my left arm or the right side of my body from the waist down. I still had total control over my arm and leg, but I couldn’t feel them at all. Over the next few weeks, I had to re-learn how to walk and how to carry things without dropping them. I discovered that, depending on whether my bladder was leaning more toward the left or the right side of my body, I couldn’t always tell if it was full or not. Weeks later, my throat was still scratchy from the breathing tube, and the doctor couldn’t guarantee that I’d ever get my beautiful singing voice back again. And the steroids I had to take made me jittery and restless… and I gained over 100 pounds in less than a month.

I felt like a chubby toddler, and I was constantly frustrated over the things that I should be able to do but couldn’t. I couldn’t even dress myself without help!

And so we come to lesson number five: Those little things we take for granted every day? Walking. Talking. Feeding yourself. Reading a book. These are blessings! We have so much to be grateful for, and it’s so true that you don’t really know what you have until it’s gone. But these days, I try to be a lot more aware of those tiny miracles.


Read part five of my Brain Tumor Story (coming 3/31/13)

or

Catch up on the story by reading Part One, Part Two, and Part Three.