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.

6 comments:

  1. Kelly, I love you! All of our love and prayers are coming your way. Right now on the super highway I'm sending all of the positive vibes I can find! Thank yor for having the courage to write your feeling down it helps those of us far away to go though this with you. We are praying everyday. Aunt Sue sends her love and prayers!

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  2. We are saddend to hear about your diagnosis but know that you and Robbie will get through it together! About 2 years ago, Kristin went through breast cancer with radiation and chemo treatments. They have come so far with treating cancer. Our thoughts and prayers will be with you. Love, Bob and Kristin

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  3. Oh Kelly. I love you. I can only imagine & would have reacted the same way. You are sooo going to fight this. May I remind you, you have the BHE & while we all might not be up there with you, you have him. There's no need to ever give up. You will have good days & bad days. I'm hardly ever good with my words. But I'm here for you whenever you want to talk, text, gossip, vent, cry, laugh, share baking tips, remind me of how beautiful it is up there, anything & everything. And I sooo love you.

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  4. I'm reading the blog and sending up the prayers and sending you the good vibes:). I believe a chocolate chip cookie is needed.
    'Becca

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  5. Kelly, I am sending every positive thought I can muster your way. You have so many friends that will support you through this. Don't forget to be your own friend - be totally compassionate toward yourself. Take one step at a time. We're here to listen...

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  6. Hi Kelly,
    So glad you are writing this blog. I wish it could be for some other reason though. I'll be thinking of you and coming back to check in on you from time to time.
    Love you!
    Steph

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