#17 Appointment Day

Today I had some appointments. Big day out.

The first was with the Child Life Specialist. The point of this meeting was to establish how we are going to tell the kids entirely about what is going on with me. We've kind of discussed that Mommy has cancer but we haven't done a full sit down and laid it all out. I was diagnosed at Christmas time and I wasn't about to have Christmas ruined for my kids by finding out Mommy has cancer.

Most kids think of Terry Fox, thanks to rather improper teaching about cancer in general in younger grades when the subject of Terry Fox comes up. The therapist said a lot of kids imagine cancer meaning you lose a body part and then die soon afterwards. For many kids, after the Terry Fox video in school they are left with many questions about cancer that don't get answered because the day ends and it's on to other things. She said her dream is to involve a PROPER discussion about cancer during the Terry Fox day at school so kids don't get the wrong idea right out of the gate. I never even thought of that. It's a valid point.

The therapist suggested we have a family meeting where she will guide the discussion and we will tell the kids with play doh and visuals how I found the lump and what it is involved, and that there are different types of cancer and what chemotherapy does.

We will then let them guide the discussion and ask questions. The main thing is that we are transparent and honest with them. This means not promising things we cant guarantee.

Sadly for me, this means when my girls ask me "Mommy are you going to die?" I can't say no. I have to say that "The doctors are doing everything they can, and they're hopefully they can get rid of the cancer and if anything changes or there is something I need to know, we will tell you". But it sucks. I can't reassure them and say yes....Mommy is going to grow old and be around for a long time. Even if it turns out to be true.

She said she's seen the other side of that and when kids are promised things and they don't happen it's a very traumatizing experience and takes a lot of therapy to undo. I don't plan on doing that to my kids. AND also....no one really can promise they wont die. So it's best to have an alternative answer.

That was the first appointment. I kind of dread the whole conversation. I want my kids to stay kids and not have to worry about the whole world of cancer and chemo but that's life for us and I can't hide them from it. It isn't healthy.

We will introduce the surgery and removal of Mommy's breasts at a later appointment unless they ask, but we're taking it step by step to ensure they are supported and feel that they can discuss even the most serious topics with us. The therapist said that she would even accompany the kids into the hospital room to see me after my surgery and help them understand what the drains are that will be hanging from my body and what happened to Mommy. I think it's a wonderful program and we're fortunate to be among the first families that have access to it at the Cancer Institute. I am very grateful for this.

Next I had to go down to the lab on the first floor and wait in line to have my blood taken. I waited 30 min in a room full of people with cancer, the room was packed. It really is amazing how many people have cancer.

Anyway, this hospital is amazing. They take the blood, they pass it through a window and within 5 minutes they have the blood work processed and in the system for the oncologist to view.

I then proceeded to see my Oncologist. He is the nicest Dr. I've ever had. He's always smiling and happy to see me and generally very positive. He said my white blood cells were at a 5.3. Normal is between 4.0-11.0. So I'm cleared to go ahead with my chemo scheduled for this Friday. My count isn't high, it's pretty borderline but it's within range so I can go ahead. It's likely in the cycles to come I may experience mouth ulcers, or ulcers along my digestive tract and some side effects but so far so good.

He told me that the headaches were a side effect of the anti-nausea medication that they gave me before chemo. It's such a strong medication that the side effect is headache. I have to take my pick...do I want debilitating headache or full blown nausea. I am going with the headache and I'll tack on a tylenol. My poor liver.....but oh well. It has to be done. I am not a very good barfer.

He also told me that I had more hair than he usually sees at this stage...I think it was round one with the cold caps, they worked to protect my hair for that first session. Next session, it should be gone.

Apparently, the effects of this type of chemotherapy aren't exactly cumulative. The nausea and headaches, loss of appetite etc will be about the same as they were for round 1 but he expects me to experience some more fatigue in weeks to come. I figured as much. Even though the chemo was almost two weeks ago I am feeling tired, my body is working so hard.

My Dr. also told me that he was really hoping chemo would be gentle for me. He said he always hopes "the really nice all around patients" have an easy time. He also knew how anxious I was about it all. He was happy it was easier than I had expected. He told me for someone on chemotherapy he was surprised how mentally sharp I was. I told him I'm doing the exercise, the yoga, the meditation and I go to bed early. He said I was a role model. It felt good. But it doesn't guarantee anything, it just shows that I'm doing everything I can to try to offset the damage and try to beat this.

Ok so I'm not exactly doing everything I should...today was the first day I didn't do my 30 minutes of exercise. I layed in bed until 1030 and the kids were home today because of the strike and I just didn't feel like moving. I won't be making a habit of it, I was just tired. I didn't want to talk about cancer all day.

Every time I go back to the hospital I'm reminded that this is serious and I can't take my eyes off the ball for even a short time. I can't just get lazy and eat a cupcake because I feel sad, or lay in bed because I feel tired. I need to do the things I know will help me, even if they suck at the time. It can literally make the difference between a good outcome and a not-so good outcome.

Jason plays Ultimate every Tuesday and so I'm alone from 8-10ish. This is the worst time of the day for me when I spiral and start worrying about all kinds of stuff. Maybe do some googling of my rare type of cancer and the sad survival rates, but I try to limit that because it doesn't help and regardless of what the survival rate is I'll tell you what it isn't.

It isn't zero and that's enough. Like the therapist told me...I can't make promises I can't keep but I can have hope and try my hardest to help create the best outcome.

The Drs and support workers and medicines do some work, but if it's not going into a body that is ready to heal, that is holistically being cared for, it's possible it will only do so much.

So I'll take my melatonin, and my passionflower tea and I'll think positive thoughts and be grateful for all of the wonderful care I accessed today for myself and my family in a world class research hospital less than a km from my home.

It really is humbling to spend an afternoon in a cancer centre, you realize pretty quickly that things could always be worse. Even for the sickest of patients, they still have access to care.

So many people in the world have no access to clean water, or food ,or medicines for their children, or to safety, or to the basic human guarantees for themselves or their children everyday.

I am grateful for the life I have here in Canada, for the amazing care I am receiving at Juravinski. I am lucky that so many gifted and caring people spend their entire lives working to give cancer patients like me a fighting chance.

It's all a very eye opening experience.