Thursday, March 22, 2012

And now we wait...

There are times when Tricare, the military's health insurance, drives me absolutely insane. With the plan that we have (Prime) we have to get referrals to see specialists. That used to not be a big deal, and then I had cancer...once, then again, and now again. And kids who need specialists. It can get to be a handful keeping the expiration dates straight. But there are other times when I sing their praises because they have authorized me to see an out-of-network doctor, or they helped take care of a claim, or the fact that we have had to pay very little for any of my surgeries, treatments, or appointments (travel costs are not our responsibility).

Tricare has come through for me once again. Not only did they approve for me to go to Johns Hopkins, but they did it in lightening speed! I found out Monday it was approved and had to wait for the authorization information to be received by Johns Hopkins to make my appointment.

I was finally able to get an appointment set with one of the top endocrinologists in the field on May 31st. I was a little disappointment it isn't sooner but there is a waiting list so I may be able to get in earlier. Although with Ian going along it's almost better for it not to get moved, less juggling for him at work.

So now that is set and we wait...and wait. Not my favorite part of anything...but I know I'll be seeing a fantastic doctor.

Monday, March 19, 2012

Telling the Boys

Last Friday night as we finished getting the older boys ready for bed, we told them about what has been going on with me. I knew they both knew something was up...they are observant 7 and 5 year olds and kids in general have a radar about their parents feelings. We've had this conversation with them before with my previous experiences with cancer, so in some ways it was easier, but I still didn't want to break their sweet little hearts. Yeah we could have waited longer to tell them, but as I mentioned they are observant. I wasn't exactly being a perky mom and they could tell I was sad. I wanted to be honest with them and have them feel comfortable talking to us if they noticed I was sad or when they are sad.

When we talk to the boys about cancer, there are a few things I like to do (and these are just things that I have learned over the last almost 9 years, I'm not a child psychologist!):
1. Use the word cancer and not sick. The "c-word" may sound very scary to adults, but most children don't have that same frame of reference. If you tell them that the Survivor is "sick" they can make the connection to themselves being sick with a cold...and it's not the same thing. And to me, if you use one set of words to talk to the kids and another to talk to others, they may feel like there is something more serious going on and you are hiding something.

2. Use simple, age-appropriate terms. When the boys were 3 and 5, telling them I had cancer in my tummy instead of cervical cancer made more sense to them. And when I had surgery, we told them I'd get medicine to help me sleep, so the doctors could removed the cancer, the stuff that doesn't belong, from my body. We bring the disease down to their level. This time we have explained that the special tests are having a hard time finding the cancer, but the doctors will keep looking until they find it. No reason to go into detail about CTs, MRIs, PETs, etc; they'll just be letters they don't understand!

3. Explain there are different types of cancer. Cancer can be scary and people can die, but more and more people are living WITH cancer every day. And that's a more positive aspect of my type of thyroid cancer. We happen to know several people with cancer and we all get different kinds of treatments with different side effects. I think it's good for my boys to understand this so they can be reassured that I'll be around for a long time to remind them to clean their rooms.

4. Help them understand they can't catch it. Parents constantly remind their children to wash their hands so they don't get sick, spread germs, catch a cold. And in a child's mind cancer may fall right into this same category. What child doesn't want to be reminded that their mom can still hug and kiss them with spread disease?!

5. Be honest when they ask questions. I love to joke around with my boys, but I make sure they know that when they ask a question about cancer, they will get the truth. No matter what they ask me about cancer, I will answer them. Because as serious and as scary as this diagnosis is, they do need to know what will happen. And I feel that if they are getting answers, they will keep coming to us and not ever feel worried that they don't know the truth.

So once we explained that the thyroid cancer was back and it's very small so it's hard to find, Jack and Sam started plotting. They came up with a plan on how to find the cancer ("X-rays! All the way to the bone!" says Sam) and then go in and scoop it out (I'm imagining ice cream scoops here). I am certain they would tell my doctors the plan if given the chance. When I told them that my doctors have a very similar plan, they were THRILLED that they are as smart as my doctors!

Maybe I won't have to go all the way to Johns Hopkins, I have my own little team of doctors right here!

Friday, March 16, 2012

Sometimes it's okay to be okay

This week has felt so long for me. Waiting for Wednesday's tests and then waiting Thursday for results. My phone was at my side at all times...I didn't even shower in fear of missing THE phone call. Cancer makes you do crazy things.

So here's what I learned:

The CT of the neck and chest both came back normal. The ultrasound of my neck, however, showed one lymph node that increased in size from 2.0 cm to 2.4 cm since February 2011. Not a huge change but a bit concerning and with the rise in Tg makes it suspicious. I was given three options: wait and see, biopsy the node, or surgery.
I decided on a fourth option...go to a thyroid cancer expert.

When I asked her about that, she was less than thrilled. She is a general endocrinologist and I need someone who does thyroids day in and day out. Who knows more about the disease than I do. I want some one who knows what to do, not give me three options even she isn't sure about. So as long as my insurance okays the referral, I'll be going to Johns Hopkins.

This recurrence doesn't change my's still a pretty normal life expectancy. And I actually do feel better knowing there really isn't a big honking tumor in there. Even though my Tg is a bit elevated, this is likely microscopic disease and there really isn't much to be done right now. So overall it's okay news. And amazingly I am okay with that.

But now I am back to living with cancer. And that part isn't okay.

Good thing I just got a new pair of running shoes, they are going to be logging lots of miles.
Brooks Trance 11 - my new shoes!