2015 Was the Best Year Yet

No seriously. Yes, yes, I have spent half the year fighting my way through breast cancer treatment. 

To borrow a phrase “It was the best of times, it was the worst of times.”

The worst part of the quote is quite obvious. So how is the best of times? Simple - people.

In 2015 I really learned what it means to be part of a community. I’ve learned how big people’s hearts can really be.  I've been shown the true meaning of caring. Since being diagnosed, people have been coming out of the woodwork to help me and the boys.  We have friends and neighbors stepping up and yes, complete strangers who have come together to support us.

Since June, when needed, there was meal train set up so that after a day of work or treatment or just inability to move off the sofa, we were always fed. One amazing friend has an amazing mom who got us a deep freeze so that we would have space for all the food given us and always have something on hand. I sometimes get a phone call about extra soup or baked goods and would we like them dropped off.  The food has nourished our bodies, the meaning behind it has nourished our hearts.

I worked as long as I could, knowing that I needed a large buffer to carry us through the lean period of EI disability. I had planned to work longer but back to back hospital stays from neutropenia and pneumonia forced me off two months sooner. Even then, people rallied around us. One amazing group held an online craft and bake sale, to raise funds, many of these people are total strangers to us. Others just collected among themselves, wanting to help. I have enough grocery store gift cards to get us through the next couple of months, without using the last of my savings. I was blown away, I still am. And this was all done without me even asking.

Then there is the time people have spent on, for and with us. Watching the boys during my hospital stay made it easier for me to concentrate on getting well. Taking the boys out to run around and get rid of energy is such a great help. Or even working without us to find ways to help. Some of the best times are when people find ways to help me spend time with the boys without using up my entire energy store. Me being sick, having cancer, is so hard on them, and we really need to be together as much as possible. Plus I need them around me as much as they need me around them.  Being able to sit on the bench at the playground and watch them while they run around with a friend is so much better than being apart from them. Even the school has been amazing. The teachers, principals and support staff have done everything they can to help while our life is turned upside down. I know that is rare and a challenge in a school with almost 600 kids. I’m rarely alone at Cancer agency appointments. One friend has provided a ray of sunshine to me and anyone else in the room during chemo treatments. I don’t think she even gets how great it has been to have her there.

For me, and many others, it’s hard to accept help but I’m learning, by need. I’m also learning to ask for help. The amazing thing is, I don’t often have to ask for help. It’s often already there, waiting for me to use it.

There are not enough words in the dictionary or enough time in the day for me to thank everyone who has helped. I’m not done treatment yet, but the light at the end of the proverbial tunnel is in sight. We are still being helped and will still need help, even after the physical needs are taken care of. I am blessed to know that help will be there. I also know in my heart that I need to “pay it forward”. I know the help was not given with expectation of it being returned but I also know that the joy, relief, compassion I’ve felt in this time needs to be passed onto other people who need help. Everyone should know the feeling of having the community that I do.

One BIG step down

It's not over but the longest step is over. I had my last chemo injection. I have to get through the 3 weeks of side-effects but the end is near.

In four weeks, just 8 days before the guy in the big red suit comes, I go in for a double mastectomy. While all surgery is scary, I'm looking forward to this one. This is where they actually cut the nasty tumor out! How much better does it get than that.

Then, 4 weeks after that I start radiation. Current mind set is daily for 5 weeks. It could go up to 6 or down to 4 but whatever, and end is in sight!!!!!

The boys are doing as well as can be expected for 6 year olds. They have up days and down days but since being off work, and after I came back from the hospital a second time, the energy normally spent at the office, is now spent on them in the evenings. This makes our time together easier and I think it's helping. It's not perfect and I expect them to get upset when I go for surgery but I'm hoping the excitement of Christmas can help offset some of it.

I'll try to post more. I have lots of thoughts and partially finished posts but none seem to make it up here.

Laughter is the Best Medicine Sometimes

When they told me I could "probably" go home the next day, I knew I had to find a way to send off in style. I had spent the first 3 days leaving bed only to walk 2 feet to the bathroom. The last two I had enough energy to sit in my side chair for one of my meals. But really, I got winded doing either. So this was going to be an ambitious undertaking. 

Safety first. I did not want to slip and fall while so close to my release. 

Then I had to put my game face on. 

Then I needed to take a break to let my heart rate recover after a coughing jag. 

And now....

Watch me nae, nae

My legs were definitely stanky by then. I did this after watching the video twice and trying it once. I apologize to those who were more offended than amused. Well, no I don't but I thought I'd say that. I do apologize for the quality of the video. 

Happily I was released from the hospital the next day as planned. This was my second time in the hospital in just over 2 weeks, probably the same infection, but I was at different stages in recovery from my last chemo so my body's response changed each time. This did delay my chemo since I was in the hospital when it had been scheduled. They are trying to get me in next week, putting me 1.5 weeks behind. This will also delay surgery which sucks. I need to wait to hear from the surgeon to know if this can still be done before Christmas. 

The Long and Winding Road

We are looking for our 4th Beatle....think you are up to the challenge?

What Glass?

Seriously. The third day after the Taxol seems the worst for me. Today is not so bad for a bad day but still bad.

On the bad day my eyes don't work as well. Well, actually that's not true, my eyes work fine but my brain can't handle them. I have mono vision. One of my eyes can see distance and one sees close up. My brain just does the work and knows how to translate it. Except today. Today it's harder. I can't see the bus number unless I cover up my 'up close' eye and leave only the distance one. I can mostly read the computer but I have to squint a lot and I cant look away and look back, takes to long to focus. It gives me a bit of a headache but that is mostly ignore-able because of the other pain.

The other pain. Wow. Its less common to get joint and muscle pain on the weekly Taxol. I guess I'm the lucky one. It may be because I have some underlying arthritis but that doesn't cover the muscle pain. So my knees, they are normally around a 2 on the scale when walking but on bad days they go up to a 10. Seriously, a 10 and maybe a 9 when sitting. It was getting worse each week. Last week I got a new prescription from the oncologist to fight it off. It is helping, today was more a 6-7 when walking, I can live with that (and I'm working from home so not much walking either). And I also got some T3s for when I can't take the pain (so far okay today, maybe when I try to sleep tonite). And I had none of the muscle pain. The muscle pain is best described like after you've run a marathon but didn't stretch and there is so much lactic acid in your muscles that it hurts not just to move, but to touch them.

Then there is the crying. It's random and it's uncontrollable. I just start crying. I can be walking down the street and it starts. It stops when it's ready to stop but I'm very sad the entire time. It's like all the sorrow has to come out at once. And it's not like I don't cry other times, maybe I don't cry in front of others often, but I do cry. This is different, this is deep sudden sorrow that I can't cheer away or postpone.

And I'm tired, beyond tired, too tired to sleep serious fatigue. Even if I could have coffee, it would not make a dent in this. I can't focus well, no multitasking, I have to concentrate on what I'm doing and do it before moving onto something else. This is not me, not me at all. In general my brain is a bit affected other days (Monday I could not remember how to crochet...I watched a short video and was okay after but I start there with the chains done and no idea how to do a single crochet stitch).

When I say Thursday, that is when it peaks, it starts a bit earlier each week. This week it was almost exactly 3pm.  How do I know? I was having a normal day. I was on the way to the bathroom and I had the random thought of "I hate my life" followed by a yawn. But generally I love my life. I can even sometimes forget about the big "C" but not on Thursday. That is such a common thought on Thursday, and it just comes to me. Thursdays I want to quit work. I want to quit seeing friends, I have no patience with the kids. TV sucks, food sucks, life sucks.

See on Thursday not only is the glass not half full, the glass is not half empty either. There is no glass left. It was dropped to the ground and stomped all over until it is just tiny little shards.

The thing that keeps me going is knowing that sometime Friday, there will be another glass. This one will be smaller than the one that was there the week before, but it will be there and it will gradually fill until it's half full again and I'm back to the optimist that is so natural for me. Until it starts all over again.

I have another two weeks of this drug. Two more weeks of this day (and a bit) of hell. Then I move onto a new unknown to me drug with it's own potential side effects. When I think of that, of the high incidence of nausea, of fatigue and of total lack of immunity, I get scared. If I think of it on a Thursday I get very scared. I'm not sure I'm strong enough. But I have to me, so I will be. But it sucks, it really, really sucks.

Glass half full

Today was a good day for me. Tomorrow, well, we'll see.

Everyone's experience with chemo is different. Here is a little window into mine so far. I have good days, mediocre days and days that suck. Every week what is good is less than the week before and what is bad is also work. But today was good day so I'll talk about mostly about that.

Even though this was a good day, I still have neuropathy in my feet. I have almost no hair. I have less coordination than I normally do (I should have worn an apron when I baked) and I have to read the recipes a few times to remember them.

I had some energy. Work went well, I got a few little things cleared off my list and got progress into a bit of a bigger project. Normally the boys have swimming on Tuesday so I don't get home until after 6 then its a rushed dinner and bedtime. I also have great friends, who ran my boys ragged at the beach after they were already run ragged at soccer camp. So they came home just before bedtime. So today, while I had the energy, I took a load of stuff to the thrift store for donation, took out the garbage and recycling, deep cleaned the bathroom (yuck), washed down a kitchen cupboard as part of my organizing, and did a load of laundry. After getting the kids to bed I baked scones and made a whipped spread for a potluck tomorrow. I managed to keep up with the cooking clean-up while the scones were baking. But I hit the wall just towards the end of the whipped spread. I managed to get it all in the fridge and the mixing bowl and beaters in the sink but then I was totally done.

It sounds like a lot and to me it is, but it was spread over almost 4 hours. Pre chemo that would have been done in under 2 hours and I would have still had energy to spare. So a good day is not like a good day pre chemo. And each week, a full energy meter is less than it was the week before.

I seem to have 2 or 3 good days a week, with Sunday and Tuesday the best normally. Monday would be good but, well, that is chemo day so there is a certain amount of stress plus a dose of benadryl that knocks me on my ass. Then there are a couple of mediocre days where I just get by. Then there are those days, the sucky ones. I'm not going into detail about those now because in my happy glass half full state, I can't give them credit. I'll try to do a post this week on a sucky day.

For now, even though I hit the wall, I had a good day. My glass remains half full, even if it is a smaller glass than it was last week, it is still half full!

Catching Up

This describes my summer so far. How about yours?

We made it

They did it! We survived Kindergarten!!!!! Then we went out to celebrate in style.

And now it's off

5 weeks really does fly by! He was a total trooper for the removal, it's very scary to see a saw pressed that close to your body.

My challenge now will be to keep him from using it too much the next few weeks.

Treed

We've had our first trip to the emergency room (I think we did well getting this long).

As you can see, not even a cast has slowed this boy down.

Something Happened on the way to the Pool