Tuesday, November 30, 2010

Tumor Idol

Tomorrow I go before the Tumor Board! I hope they like me!

Ok, it’s not actually me going before the board – just my case file. Here in Hickory, they have a regularly meeting of the Tumor Board. It is a forum to collectively discuss tumor cases and brainstorm a course of action. So tomorrow while I’m working and trying hard not to sound like Darth Vadar breathing, my tumor will be in the spotlight. I have my first oncology appointment on Friday, and the oncologist will be armed with the recommendations of the tumor board.

For me, knowing that I have cancer makes me want to start treatment RIGHT NOW. I hate the thought of the cancer cells growing and spreading and wreaking havoc. The waiting is agony. It’s hard to go to work every day and have any type of focus. But not going to work isn’t really an option. When you know cancer treatment is just over the horizon, you start to really covet all your available sick and vacation time.

I did have a great distraction today. A good friend drove into Charlotte to have lunch with me. I worked with her for a few months when I first moved to North Carolina. She and I hit it off almost immediately and very few people can make me laugh the way she does. We had a fabulous lunch and I laughed until I seriously couldn’t breathe. This tumor and it’s need to push against my windpipe is completely cramping my style.

When I got back to the office after lunch, I felt exhausted. I think it was a combination of the laughing and not being able to catch my breath, along with poor sleep from the windpipe issue. I think I need a beanbag in my office so I can take naps.

I’m home now relaxing, and Robbie is working on his bedroom painting project. The color is called “Restful” by Behr and it’s fabulous. My lofty goal for the evening is to stay awake long enough to watch Glee. I also need to practice dialing in some votes for my tumor's big debut tomorrow.

Monday, November 29, 2010

Men Are From Mars

Anyone who has ever read “Men Are From Mars, Women Are From Venus” knows that men have a fundamental need to fix things. It is difficult for them to just to sit back and do nothing when there is something wrong. Particularly when it’s something wrong with someone they love.

Every since I received the diagnosis, Robbie has been in “fix-it” mode. Except there is one small problem. He can’t fix the one thing he really wants to fix. So he's had to displace his need to fix. Over the weekend he researched what types of things can be done around the house to prepare for chemotherapy. I think most people know, but chemotherapy breaks down your immune system. This will leave me vulnerable to bacteria and infections so it’s important to limit exposure to viruses. The cleaner my environment, the better.

He came home from Bed Bath and Beyond yesterday with a humidifier, cleaners, and a new mop. He was disappointed that they didn’t have the HEPA filter he was hoping to get and plans to order that online. He also spent yesterday doing laundry, bleaching surfaces, and cleaning our bedroom. He’s also informed me that once chemotherapy starts I can’t garden, cannot have cut flowers in the house, can only have meat that is well-cooked, and that the dogs must be bathed regularly.

I had mentioned to him that I would like a TV for our bedroom since odds are that I’ll be resting a bit in the near future. I was thinking it would make a great Christmas gift for me. He is a man of action - the TV is already on order and will be here later this week. We had also talked about painting our bedroom sometime soon. It was still "contractor white" from when we moved in. As I sit and type this, he is upstairs painting a lovely shade of green he picked up at Home Depot called "Restful."

It is only for the sake of humor that I make light of his obsession with preparing a sanctuary for me. I cannot express how much I appreciate that I have a husband who is a positive force and wants to be on the front lines fighting with me. As my friend Erica and I often joke, I have the “BHE”. (Best Husband Ever).

In other news, the word is out. I’ve been having “the talk” with all the people I need to have it with – family, boss, co-workers, and friends. I appreciate those who have the ability to share my dark humor during this time. Today, as I was grabbing M&Ms out of the candy bowl at work, one of my co-workers said to me “Don’t be spreading your cancer in the M&Ms!” This made me laugh out loud.

Many people don't even want to talk about it. Heck, if it weren't me, I probably would be that person. I can understand why it's an uncomfortable topic. No one wants to talk about something that makes us acutely aware of our own mortality. And I also understand that many people just have no idea what to say. To those folks I say gifts will easily take the place of kind words. Send cookies or chocolate - just no cut flowers please :)

In all seriousness, I have gotten many E-mails, posts, calls, etc. with an amazing amount of support. I always say that I'm surrounded by the best group of folks a girl could know. You don't know how every little ding on my blackberry with a new post makes me smile and lightens the weight of the world just a bit.

Sunday, November 28, 2010

A Surprise Diagnosis

I have cancer.

It’s so bizarre to type those words. It still doesn’t seem real. It seems like a weird dream. But days have gone by and I can’t seem to wake up.

I think it’s important to share how it was discovered. As I research other discovery stories, I am learning that it’s less often straightforward and frequently a surprise diagnosis. And even when the clues may be obvious, the tendency is to continue to believe that it couldn’t possibly be true.

My story actually starts back in September. I had a funky ear/throat thing going on. Seemed sort of like a cold, but my ear ached and my lymph nodes were a little swollen. I was also falling asleep on the couch at about 8:30 or 9 every night. Robbie encouraged me to go to the Doctor. I didn’t have a regularly doctor yet (other than my gyn) so I just went to a walk-in clinic. I was given a quick diagnosis of an ear infection. I’m sure they get a dozen of these types of things every day. They gave me what I came for – antibiotics.

I took them, and I felt a little better. Lymph nodes were still swollen, but I had also began to have a toothache. I made an appointment for the dentist, and he said I needed a root canal. He gave me another round of antiobiotics and some pain medication. I mentioned that my lymph nodes were swollen, but he said it was most likely related to the infection in the tooth. And after looking online, I concurred. Don’t we all do that? Try to self-diagnose? So I made an appointment for two weeks out for the root canal. By this time it’s October. My lymph nodes in my neck felt hard and swollen, but I assumed it was the back-to-back infections. I knew that as soon as I had my root canal it would feel immediately better.

So the root canal came and went, but the swelling in my neck did not. And I was feeling a little short of breath. And as an overweight person, I assumed I was just really in bad shape – particularly because I hadn’t felt great the last few weeks and hadn’t been doing much because of the infection and the root canal. I contacted the all-knowing Internet again, and most folks who had swollen lymph nodes related to dental infection, had almost immediate relief once they had the root canal. I researched swollen lymph nodes and found everything from mono to lymphoma. But again, I assumed it was probably nothing. Even though I did have a voice in the back of my head saying otherwise.

Another week or two goes by, and no change. In fact, the lump may have even gotten bigger. Robbie encourages me to make an appointment with his Doctor. I actually called for two days trying to make the appointment – for some reason all I could get was the answering machine. But finally they return my call and I have an appointment for the next week.

At the appointment, the doctor feels my neck, and says yes – feels like a swollen lymph node. But I didn’t have any sort of fever. So she refers me to a surgical consult so that he can take a look. That appointment is the following week. At this point, I’m annoyed that I’m going to the Doctor almost every week. I’m also still breathless and tired of the swelling in my neck. So I show up at the surgical appointment and he seems to think it’s my thyroid. He wants to do an Ultrasound, but the technician is out because it’s her Grandfather’s Birthday or something like that. So guess what? I have an appointment for the following week.

I show up for the Ultrasound. The ultrasound technician must have spent 25 minutes repeatedly scanning my neck. Then she called the Doctor in, and went over several areas again. They were still talking thyroid, but I did hear her say, “see that lymphnode right there” and “complex”. I couldn’t see the screen because I need to look up so they could scan. He decided to do a fine need aspiration (FNA) biopsy while I was there. At this point he still felt it was a thyroid growth, and he said it was his opinion that I would most likely need to have my thyroid removed.

After the Doctor left the room, I asked the Ultrasound tech if she thought it was anything. All she said was “I’m very concerned.” The biopsy results will take a few days, so they make me an appointment for the following week to discuss results. The week of that appointment is Thanksgiving so they are closed for a few days, so there is only a one day window for the appointment, or I’d have to wait until after the Holiday. And that one day is a day I have an all day meeting at work. Great. So I take a late day appointment, and make plans to miss a portion of my work meeting.

At that point, I’m very concerned. I go home and research thyroid removal and thyroid cancer. I fully expected a diagnosis of thyroid cancer. But in most cases they would surgically remove the thyroid. And usually you didn’t even have to have chemotherapy. Yes, it would be a lifetime of taking pills, but I could deal with that.

Robbie goes with me to my next appointment. And I kept telling him he didn’t need to, and that I’d be fine. I can be so stubborn and independent at times – often to my own demise. So the Doctor comes in, and we joke about the bruising on my neck from the FNA he’d done the week before. Robbie was not thrilled with this guy and is annoyed already. He’s a young surgeon and has a cocky demeanor to him. The Doctor tells me it is not my thyroid, and that in fact the pathology said it wasn’t even thyroid tissue that was biopsied. He says it’s large cell lymphoma. And I say “Cancer? Really?” It’s completely surreal at this point. The Doctor is actually smiling and saying “But now we know what it is. And I’m just a dumb surgeon and I’m going to refer you to someone who can handle this.” And I start to ask questions like “What kind of lymphoma?” And he said he doesn’t know.

At this point, I am trying to hold it together, but it’s just not happening. I have tears welling up, and I feel numb. He leaves the room, with a pat on the shoulder, and I start full-on crying. The nurse comes in with my appointment (for the next week of course) and offers to check me out at the desk and shows me the back door so I don’t need to go through the lobby.

I get to the car and start sobbing. I really feel like I can’t breathe. I roll down the window and spend about 10 minutes just crying. Robbie is very quiet. We’re both in shock I think. We go straight home. By the time we’re home I’ve stopped crying. Robbie is a rock. I can’t remember what he says exactly and the sequence, but I know he told me over and over that we’d get through it, and that I was going to be ok, and that we’d fight it – whatever it takes. We do a little online research, but I don’t think either of us had much stomach for it that evening.

My head was swirling with 100 different thoughts. And it is weird, but it wasn’t the important things like prognosis or finances or selecting an oncologist. I think the important things were just too big for me to even process yet. Instead it was the mundane detailed stuff. “Will we be able to have the Christmas Party with the wine club?” “Man, my boss is not going to be happy about this.” “Can I drive myself home from chemotherapy?” “Do the dogs know I have cancer? Can’t they smell these things?”

I think I’ll end this first post here. It is therapeutic to write this down. To some extent it feels like I’m releasing some of the negative energy so that I may focus on the positive. This is going to be a long journey, and I know I will need all the support I can find. I hope you will share this journey with me and send me loads of positive vibes because I am taking up a collection! I am doing something I never do. I am asking you for your help. I want you to help me fight this. Not with pity, but with your friendship and your amazing wit and your belief that I’m going to conquer this.

Stay tuned, much more to share.