The Christmas Shoes

I’ve been having lots of fun! An evening painting party, Emily’s band concert where she played a solo on her saxophone, a fun movie experience last night and lots of going out to eat with dear people. Oh and I’m caught up with The Crown. Makes me mad that I’ll likely miss the Dianna years!

It’s hard not to wait for the other shoe to drop. I don’t know when the pendulum of the good things the radiation brought about will start swinging back the other way. But I’m trying not to think about it. My doctor increased my nerve pain medication and it makes me drowsy which is ok too because if I know WHY then it’s not worrying. My next scan is not till mid January so I’ll know more then. 

I continue to plan what I call “the service.” I don’t think it will be your conventional funeral and I don’t want to spoil the surprises that people are kindly helping me prepare. It makes me happy to know there will be some swag to take home. I think I’ve found the perfect officiant who wants to meet me before the big day and there’s a poem I wrote 8 long years ago when I was first diagnosed with cancer. Wow have the people I wrote it to ever changed! Some were not even born yet and some have children of their own! So many bonus years and now hopefully many bonus months. Wow wow wow!

Speaking of shoes dropping. I didn’t just buy mustard I bought some new shoes too! Now that’s a commitment to living!

I wrote the following on Face book too but I want a record of it here too. Especially the part where I thank the people in Hamilton because they were fantastic!

Was supposed to go see my gyny oncologist in Hamilton today but we decided not to go while it was storming yesterday so of course it was nice today but honestly I probably wouldn’t have gone anyway, riding in a car hurts my shoulder and increases nerve pain. I don’t mind if there’s a fun cookie destination at the end of the ride but going to a cancer centre isn’t fun. To be fair the Hamilton cancer centre does in fact have a lovely volunteer pushing a juice and cookie trolly around, but the cookies aren’t up to snuff. Trolly, Up to snuff? Did I mention I’ve been watching The Crown? 😄

So what I did was stay at home with a very cuddly cat as you will see and called the gyny oncologist’s nurse and she’d been talking to the doctor and we all agreed that unless there was a problem in their field of expertise I’ll stick to Kitchener now. I can always call them if needs be. I thanked them (and I thank God) for 8 years of life after a cancer diagnosis that could have potentially been less than a year. Skin cancer is no joke in the vulvar region it can invade your lymph nodes like wild fire. It’s no joke anywhere really. No one should sun bath.

Get it while you can!

Can you see the headline?

“Unexplained run on mustard in KW region leaves soft pretzel venders reeling throughout region!”

Lots of fun at Costco tonight with friends Kathy and Jessica!

A Moments Reprieve

Ladies and gentlemen I bought the mustard! It was especially gratifying to buy it after my appointment with the radiation doctor today. She feels the recent scan was done much too soon and has scheduled another for mid January when the radiation results will be more accurate. Barring unforeseen circumstances and judging by how great I feel right now she feels I’ll be around then and more. How much more is again unknown, the cancer will not go away, but she says I’m not ready for hospice and I’m taking this as licence to live life to the fullest. For me this means live my best ordinary life and say yes as much as possible to love. Tonight we went to the mall and I had my first ever hot pretzel! Then Rezonation quartet came and Christmas caroled Harry and me! They witnessed me signing my completed will and kindly agreed to sing at my service. Oh and let’s not forget Sheri brought me coconut pecan tarts! It’s just all so sweet and having a little longer than I expected is unbelievably fantastic!

Mustard seed

You know you’re dying when you find yourself wondering if you really need to buy more mustard since you don’t really use it all that much.

My niece Melissa made us a perfect emoji for times like this when it’s funny but also it’s not funny too.

And yes I’m going to buy more mustard.

Comfort

Harry’s love affair with this chair continues. Today my nurse was sitting in it and I saw Harry watching for a chance to take it over. I mentioned it to the nurse and when she got up to check my breathing we watched to see what he’d do but she’d left the binder in the chair so I guess Harry felt she’d saved it for herself. He did watch her like a hawk while trying to act all casual and I guess we were laughing at him which was too much so he went into the kitchen and sat in a corner with his back turned to us. 

I am probably going to put the quilt on my chair now though so my smell gets infused into it because the quilt will stay with Harry after I go and hopefully that will be of some comfort to my little emo cat. 

Story time

Sometime in the 90's I wrote a story. It's a book for children with more than a side of inner child work. At the time I made three little books out of the story in decorated folders. But tonight I just want to add the link to the story so it's part of this blog. If you're interested sit down with a cup of tea sometime and give it a read. I hope it makes you smile.

https://drive.google.com/open?id=1jPCDfljt760GqYXWmH4LM8WHJ7MV9yNZ

Sorry, can’t remember how to post live links so cut and paste if you are interested or just move on. Thanks.

First

This summer I watched the little bird in this picture fly for the first time. It just took the leap like it was programmed to do I guess. Still it took courage.

We humans take the leap into death a little harder. People ask how I am doing emotionally and mostly it just feels surreal, mixed with sadness upon leaving and a whole lot of heartfelt love, sorrow and joy for what we had and have being expressed out loud. For me, and I don't expect everyone to be like me, it helps to talk about it and plan. But if this talk about death is hard for you, please, it isn't necessary for you to read here. And if we talk in person tell me that.

Sorry if my words about entering the palliative side of the healthcare system in a previous blog post gave the impression I was in hospice care already. I just meant that once your illness passes a certain point you are cared for by palliative nurses and social workers. I'm actually feeling pretty good physically aside from the pain and some remaining tiredness and I hope to get out for a fun day tomorrow. I'll take lots of rests along the way.

The closer I get to being that bird on the edge of the nest the less I am interested in facing death with fear. The pain killers probably help numb that fear but picturing it like being at the top of the world's tallest, wildest, roller coaster helps. The trick is that no person I know currently has ridden this ride. Everyone, even in the same religion, has wildly divergent opinions on what's going to happen and they're all convinced they're right. Imma likely (but not for sure) gonna find out before you. I get to go first! We all do.

Cookies

Yesterday’s cat scan was really long and boring. I couldn’t even sit with Anne because I needed to be on the room oxygen so I was put in one of the gurney bays and I felt like I was parked in a garage like a car. Everyone was super nice though and got me out of there as soon as possible. Still it had been 3 days of Dr’s visits and tests in a row and I decided that any further appointments should involve cookies and or ice cream. My nephew Paul made up a fun cookie appointment day:

"I've got a tight schedule, but if I push the shortbread back to 4 pm, I might be able to squeeze in a mint chocolate chip after my recurring whoopie pies 2pm...  I'll just have to cross town quickly" That kind of thing?

Me: Yes but I’d yell STAT a lot too!

Paul: that oatmeal raisin isn't going to eat itself, run the red light!! I don't wanna hear about unforseen weather, I've never broken a promise to a Rocky Road and I don't intend to start now!!

Me: love this ride but we’re gonna have to put our foot down at oatmeal raisin. No need to involve little desiccated balls of fruit! Chocolate chip forever!

Paul: so no date squares or fruitcake??

Me: You are a very quick learner!

Paul: Back to the drawing board:. "have to reschedule???  I guess your word is as spotty as your chocolate chip cookie dough!"

So kind of Willy Wonka except with appointments :-)

And now today the cookie theme continues with my friend Judy-Anne bringing over some of her husband John’s most excellent baking! Three level of greatness! Thank you!

Going the Distance

If you've been following along on Facebook you'll know more or less what's going on in my life but this a point now where I feel the need to return to this blog so we can finish this journey together.

Over this past late spring and summer I developed a cough and I soundly ignored the cough and the fact that it was difficult to breath if I pushed mobility. I'm not sorry I ignored the symptoms because they wouldn't have changed and nothing different could have been done. This is not to say YOU should ignore symptoms, I just feel after what I've gone through since 2012 I deserve a break in the denial department.

Anyway, I was blaming everything on my kidneys (who are functioning just fine thank you) when I finally couldn't ignore the endless fevers and cough and went to emerge where a chest X-ray showed a dirty old sock (big dried out tumour) and a dead lymph node in my right lung. After much faffing about trying to make it a possible infection it was finally diagnosed as cancer, most likely metastasised from the vulvar cancer.

That's me, always need to be different.  Non smoker getting lung cancer.

So now I enter the palliative side of our healthcare world and trust me it is as wacky as all get out. Earnestly wacky to be sure.

Come along with me and I'll show you. Let's see if I can meet my goal of dying as well as I have lived. Which is to say, not half badly, if I do say so myself.

Wonder Woman sock puppet by the talented Caleb Schlueter

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A year