Saturday, May 7, 2011

A Day at Mayo

A little background on my health first. I was diagnosed with chondrosarcoma about 11 1/2 years ago, just a few months after my husband and I were married. I had been having pain in my knee, which prompted an x-ray to see what was going on. The radiologist saw that I had all these bumps on my bones and ordered x-rays of my whole body. These bumps were not news to me. My sister and I inherited them from my mom. It's called Multiple Hereditary Exostoses. The radiologist knew that there was a chance (about 1 in 1,000) that one of these bumps could become malignant, so he just wanted to check and make sure. Unfortunately, the x-rays revealed a mass in my pelvis.

I went in for an MRI to get a better picture of the mass. It was attached to my pubic bone and growing down alongside my femur. And it was quite large. The tumor was pushing my leg out of alignment, which is way I was having pain in my knee. It's still kind of mystery how I didn't know it was there since it was so large. The theory is that it was so slow growing and it was growing down the inside of of leg, I just didn't notice it. The changes were so minimal over time that I got used to it before it even registered that it was there.

Long story short, I had major surgery to remove the tumor, along with a good portion of my pubic bone. I've had four surgeries since then to remove recurrences. I've had about half of my pubic bone removed on both sides. You can't tell just by looking at me what I've been through, but I have the scars and missing bones to prove it.

I have to go to Mayo every year now for a check-up. I had my most recent one just this last Thursday. It is the most stressful thing we go through each year. It starts out early in the morning, after a night of fasting, with a blood test. We walk down the long corridor of the Mayo subway, which isn't for trains, but for people. A series of hallways underneath connects all of the different Mayo buildings, parking ramps and several hotels. We make our way from the parking ramp clear to the other side as students lumbered down with backpacks and doctors in their crisp suits and mugs of coffee briskly pass us by. Every once in a while you are treated to sun shining in through windows, where the earth has been carved out below street level to make the subway seem less gloomy.

I check in and am told to sit out in the lobby, where rows and rows of chairs are set up like a theater. The show is three doors, where technicians come out about every thirty seconds to announce some one's name. Finally, my name is called, and everyone gives me a round of applause as I make my way towards door number one. I give a bow and head on back to have my blood drawn. OK, so I was making that last part up about the applause and the bow, but wouldn't it have been more fun?

I come out with gauze wrapped around my arm and we head to Caribou Coffee, which is also in the subway. Since I'm done fasting, I can have my usual treat of lemon poppy seed bread and a dark mint condition latte. We sit and watch all the patients and staff get their coffee. Some stay and chat, others take off in a hurry to get back to their jobs or appointments. After a while we get out our newspaper and magazines. My next appointment isn't for over an hour, so we try to relax as much as we can. Finally, a group of three women come in and the one has the loudest voice and laugh we've ever heard. After sitting there enduring the loudness of this person for a few minutes, we decide it's time to move on. We are a fair way down the subway when we still hear her laugh echoing down the corridor. Yep, good time to leave.

We head up to the 4th floor of the Mayo building where I am to have my chest x-ray. Luckily, I only have to wait a few minutes and I'm escorted back to a changing room. I have to undress from the waist up and then put on this wrap-around paper shirt with three arm holes. After I figure out how to put the crazy thing on, I push a button and wait for another technician to come and take me to the x-ray machine. After a couple of "deep breath, then hold your breath.....OK you can breathe," I change back into my clothes and meet my husband back out in the lobby. We still have over an hour until my next appointment, the MRI, but head down there anyways. Back down to the subway, then up to the second floor of another building.

Sometimes if you get to an appointment early, they will squeeze you in, but not this time. One of the machines is down. Darn. I'm called back to have an IV line started in case they need to give me a contrast solution during the MRI to make things show up better. They have a hard time finding a good vein and the IV hurts after they finally get it in. I have very weak veins so it's always an ordeal getting those lines started. I go back to the lobby and join my hubby again to wait some more. I immediately being to feel light-headed and almost pass out. I think the combination of having the IV line put in and the fasting, followed by too much sugar and caffeine do me in. I finally start feeling normal again when they call me back for my MRI. I get undressed and put on a typical hospital gown. Everything metal must come off, except for your wedding ring. I'm escorted to a sub waiting room. Nobody else is in there and it's freezing. My IV still hurts. I try to keep myself busy reading "Reminisce" magazine, featuring photos from days of yore.

Finally they are ready for me. I'm taken to a big room where the monster machine is chugging away making chirping noises. They ask me a dozen questions making sure I have no metal in my body. No, I don't have a pacemaker or embedded shrapnel. They help me up on a cold metal table and adjust my position. They give me earplugs and the one technician covers me in a blissfully warm blanket. They always keep these rooms so cold. They push a button and the table slides into the big round machine. There is cool air blowing from the other end of the tube and I'm really happy to have my warm snugly blanket. I lay there as still as I can while they go through a series of scans. Some are 2 minutes long, some are 5 minutes long. Some sound like jackhammers (thus the ear plugs), some sound like clanking on metal pipes. Finally they come in a say that I'm all done. I'm elated because they didn't need to do the contrast. This means that the radiologist didn't see anything. Yay! Unfortunately, it means the IV line was put in for nothing. The nurse removes the line and helps me off the table.

I go get my clothes back on and head back out to the lobby to find my hubby. We make our way back down to the subway and to Bruegger's Bagels for lunch. It's our usual lunch place when visiting Mayo. I get a pumpernickel bagel with veggie cream cheese and chicken wild rice soup. We take our time eating since I'm still feeling woozy. I only have two appointments left, my hip x-ray and then finally meeting with my doctor.

We head up to the new orthopaedic clinic on the 14th floor. I wait a while and then get in to get my hips x-rayed and then wait a little more to get in to see the doctor. This time we get in 45 minutes early! Once again, I take off my clothes and put on a hospital gown. We wait some more and a resident doctor comes in. He says he's from Florida and can't wait for the Minnesota winter to be done with. Then he tells us the news that we've been waiting to hear: I show no evidence of residual recurrent disease! Finally, for the first time that day, I can breathe. And not just because the radiology technician said that I could. Then my doctor comes in. He brings a visiting doctor from Turkey and a couple more doctors that I'm just too excited to remember their names or where they are from. He shows them my peculiar images on the computer screen and gives them a brief history of my disease. Sometimes I feel like a circus side show. Then he pokes and prods and checks my leg functions. At this point it all smooth sailing. He can do anything he wants, I'm just glad I'm still cancer-free. As soon as the doctors leave the room, I shoot my arms up in the air and say "Yes!" My husband and I hug and then we get the heck out of there.

So that's a day at Mayo. See you next year.


  1. thank you for sharing and so happy to hear to good news!

  2. I am glad that your tests were all clear!

  3. Thank you for sharing your story. I knew you had cancer in the past and it was interesting reading your story and what you go through each year when you go to the Mayo Clinic. I wish you and your husband all the best. (((hugs)) I am glad to hear the news. ~Kelly :)

  4. What a relief for you and your hubby. You have had quite a journey.