Saturday, July 21, 2012

Still kicking

Just because I'm dying doesn't mean I'm dead yet. Not that I've been doing all kinds of exciting things, but they've been enjoyable non-the-less.

I've been doing lots of visiting (don't stop or feel I'm getting too tired to receive visitors). I love seeing everyone, visiting and reminiscing.

Yesterday I went to my sister's again to swim in her pool and lounge around on her deck. Unfortunately, the wind was just a little too nippy and I decided to forego the pool. But I had a lovely visit with my sister, parents and cousins. If I continue to feel well and manage to keep a drainage port out of my belly, trips to my sister's may be in my weekly plans. Hopefully next time the weather will be hot, hot, hot and I'll enjoy dipping in the refreshing waters.

As for a health update, I feel about the same, if not a bit better. I've had more bowel movements and managed to eat more food. So that's all good. I am getting used to the Fentanyl patches slowly releasing their pain meds into my system because I don't seem as dyslexic and slow as before, both in writing and speaking.

Yesterday though I fell down. My legs got weak, gave out from under me and I went down on my sister's pool deck. It was extremely embarassing and made me cry. I've noticed I've been getting weaker over the past few weeks and Michael says I'm unsteady on my feet; but to collapse unexpectedly shocked me. It's a sign to me the disease is taking over in small incremements.

I'm also still sleeping a lot.

I'm also still struggling with how to create memorable moments with my kids. At 14, Noah wants to play on his computer and hang out with his friends. Tara, at almost 11, wants to play with friends. These are not the ages where it's cool to hang out with your parents. I want to do things with them, but struggle with what will be fun, what will they remember and what won't be lame. So we're talking about a couple of events we can do with the kids. Of course, heading to the beach and my sister's, the drive, the listening to stories in the car and the conversations are all little memories.

I guess little memories add up to the big memories that contribute to making a life special. Remember that as you go about your chores and activities today. It's all part of this big, wonderful event called life.


Sunday, July 15, 2012


I think this is the longest period of time I've gone without writing a blog. I've been try to sort my scattered thoughts, trying to make sense of the news I've been given and I can't. I feel discombobulated. It all still feels surreal. I can't possible be dying. How can any of this be real?

And I feel like a robot because I'm not crying. Sure, I have these little crying spurts every once in a while, but after a few seconds they're done. I should be wailing against the world and the injustice of it all. But I can't seem to dredge them up from my emotional reservoirs. I feel like a freak.

I've also been sleeping A LOT. I don't think I've slept this much since those hearty party days back in unversity where noon was a common time to rise and shine. Of course, during those days, I'd stumble into bed around 4 a.m., not 8 or 9 p.m. The cancer must be taking a lot out of me. It must be sucking up such incredible energy reserves that I have little for anything else.

Although I have managed to make some memories over the past couple of days. On Friday, I went to my sister's and lounged in her pool for a good hour. It felt awesome to have cool water wash over my skin. I also got to visit with aunts, parents, my sister and brother-in-law and nephews during the very relaxing afternoon.

Yesterday, I made it to Port Franks (aka the spa). We went down to the beach and I managed to immerse myself in the lake that makes me so happy. I'm so glad we went to spend the afternoon at the beach and hang out with Diane and Pete.

Today I've had visitors, which always make me smile. It's wonderful to be loved by some awesome people. I am a very, very fortunate woman.

A few recent observations I thought I'd mention:
  • I managed two bowel movements over the past two days so I'm trying to eat small amounts of food again to see how I manage. A scrambled egg and a piece of toast comprised my lunch and half an English muffin with some brie cheese made a tasty supper. I am already getting sick of the dessert-like Boost and Ensure supplements so if I can eat real foods every once in a while, that would make me happy.
  • I feel slightly groggy/foggy/tired much of the time.
  • When I type on my BlackBerry or computer, I make far more mistakes than I used to. It's almost as if I'm dyslexic sometimes.
  • I speak, move and think much slower than I used to, as well. I'm also very precise like when you're slightly inebriated but don't want anyone to know it (but everyone does anyway). 
Perhaps some of these oddities can be written off on the Fentanyl patch I've been wearing since I've been home. Michael slapped one on me shortly after I walked in the door and I'm been sporting the slow-release pain medication patches since Wednesday.

I've also accomplished a couple of extra preparatory tasks since coming home from the hospital. On Thursday, Michael and I, with the help of our good friend, Jack, picked out a plot and grave stone. That adds one more check mark to our to do-list; something Michael doesn't have to do after I die.

We've also met with a spiritual counsellor to help plan part of my funeral. He'll be the person who will be the master of ceremonies, if you will, on the big day. I don't have a direct affilitation with a church so having this role filled has always been in the back of my mind, but the recent speeding up of timelines had me a little freaked out.

I'm also showing Michael how to do some of the tasks I always did, like paying bills, filing benefits, checking accounts online. Like any marriage, we divided up the tasks and ran with them. Now, sadly, he's going to have to learn to do them all one. That makes me feel very, very sad.

Thinking about all the experiences my kids are doing to have without me also washes me with sadness. I won't be there for Tara's first period or her grade 8 graduation. I won't be present to watch either of my kids go on their first dates, fall in/out of love for the first time, graduate, make career choices, choose life partners/get married and maybe have children. That breaks my heart.

It also breaks my heart that Michael won't have anyone with whom to share these milestones. (In all honesty, he may, but it makes me so jealous to think of him with another woman. But of course, I don't want him to be alone or lonely.)

So I've been slowly contemplating lately what the end will be like. I ask almost every doctor, palliative care worker, nurse, etc. that I encounter. I want to die at home but I don't want it to be ugly and traumatize the kids. I don't want me to be incredibly sick with lots of clean up for my family. The answers I've received is that it shouldn't be anything like that, but a more peaceful process with me slowly getting sleepier and sleepier, and drifting off. I may have some confusion or perhaps a coma-like state at the end but I shouldn't be sick and messy everywhere. And that's what I want. Now if circumstances change and things start to get ugly where I need full-time nursing care, I have no problems going into a Palliative Care Unit at one of the hospitals.

I know my last wishes for a home death is going to require a lot of sacrifice on the part of my family and friends because someone will need to be with me at all times. But I've been assured, if that's what I want, Michael will do everything in his power to make it happen. He's such an amazing caregiver and I know he's going to be there right until the end.

People should not have to spend this much time thinking about the end of their days. But as Michael says, it could be worse. I could have been snatched from him in a car accident and he'd never had the chance to say goodbye or reminisce about all the good times we've had. And there are far worse ways to die. So in some ways, I consider myself lucky. I've lived a good life, surrounded by amazing people. For what more could I ask?


Tuesday, July 10, 2012


Correction: This is the hardest blog I've ever had to write.

Dr. W came in today and I found out there's nothing more we can do except make me comfortable. I'm not strong enough for the chemo and it wouldn't do anything to improve the quality and quantity of my life. It would make what little time I have left miserable - and that's not worth it.

I'm now experiencing some nausea and pain because of the blockage in my bowel. Food and water do not have anywhere to go so I'm vomiting.

I don't know what to do or say right now. I'm in shock. I'm exhausted physically and mentally. I can't even cry. I'm numb. So if you come visit me, I will not be normal. This is not normal. This is a completely messed up situation and so fucking unfair.

I want to thank everyone for all the emails, comments and Facebook messages, and I was responding to each one individually, but I can't do that any more. I'm sorry. I do appreciate all the compliments, wonderful comments, good wishes and prayers. They mean more than you could possibly know. 

So I'm going to take a few days without being hooked up to anything to enjoy the hot tub, swimming and the beach one last time. I'm going to fit what I can in the next few days because I will probably need to be tether to an IV pole and an ascities draining bag very soon.

I don't have long. That breaks my heart because I'll soon be leaving the wonderful life I've built for myself. It may not be the perfection that is heaven, but it's pretty darn good to me.

Do me a favour today, tell someone special you love them, eat something especially good and try to build a lasting memory. Do it for me.

Lots of love

Thursday, July 5, 2012

Hardest to write

This is the most difficult blog I've had to write because this is the one in which I have to tell you I'm terminal and there may not be anything left to do except wait.

There is a loop in my small bowel, which is increasing in size and a narrowing that sometimes closes up causing an obstruction. That's why I was throwing up. The food had no where to go and it had to come up.

If they can get me to tolerate full fluids (which I am), I can get full nutrition through things like Ensure and Boost and we may be able to consider some chemotherapy. We'd be pulling the one we were saving in our back pocket (and it's time to go to the back pocket) and trying that - Carboplatin. But the problem with that particular chemo is it can compromise my immune system. If that happens, that could hasten death through pneumonia or some other infection.

So the decision whether to try another chemo will be based on whether it will improve the quality and quantity of my life. If it won't, there's no sense in trying it. I know chemo decreases the quality of life, but if it gives me more quality time afterwards, it may be worth it.

But we're taking it day by day and seeing how I tolerate the food I'm being given. Right now I'm on full fluids, which means cream soups, pudding, ice cream, milk, as well as clear fluids. It's going well with no problems. These are the fluids that can give me the nutrition I need to tolerate chemo. And we'll talk about chemotherapy at my doctor's appointment with Dr. W on Tuesday.

So long story short, my friends, I have weeks to months to live. I hope they're wrong and I get a year, but I have to live like I don't have long.

I'm telling you all this to prepare you for that blog where Michael writes I died and to give you a chance to adjust and contact me or see me if you want. Tell me today how you feel because I may not be around tomorrow.

I want to thank you all for being my friends, all your support and love, and for following my journey as it unfolded (and continues to do so). You've been an amazing village and I couldn't have done this without you all. So a big thank you, and lots and lots of love.


Wednesday, July 4, 2012

More serious than soup

It looks as though I will be appearing at the Hospital Victoria throughout the entire week. The situation seems to be more serious than originally thought.

The goal of the doctors right now is to stop the vomiting and get nutrition into me. They're trying combinations of drugs to figure it out. I'm back on no food and limited clear fluids. If they can get me back on taking nutrition, we're going to start chemotherapy again. My CA-125 doubled during my brief chemo vacation.

My goal is to convince my body to cooperate and fight this fucking cancer with everything I have in me.

If you've got some spare prayers or good karma, I could really use some directed my way right now.

With love to all my followers

Tuesday, July 3, 2012

From poop to soup

Well, bad news. I most likely won't be going home today. I started throwing up again last night. Dinner came out in a torrential outburst about 9:30 last night after I suffered through some severe cramping. The prune juice, 1/2 muffin and 1/2 coffee that comprised my breakfast also made it's way back up this morning. When the doc came in and asked, "How ya doing?" my reply was, "Not good."

So after initially being told I was going to have another x-ray, I ended up having a CT scan. I had to drink a bunch of that Tang flavoured radioactive juice (not so pleasant on a queasy tummy) and get three or four scans done in the CT suite. Now, I'm back in my room.

I managed to slurp up the broccoli soup I ordered as part of my lunch, but I couldn't face the ginger beef stir fry. I'm trying to be careful and cautious so I don't see my food again. That's not pleasant. I'm also trying to see what I can tolerate.

I strongly encouraged a poop out of my body last night and experienced a bit of diarrhea this morning. But with the vomiting, I don't want to be going anywhere. I want them to figure this out before they ship me home. I'd rather be here where they can run tests and provide answers than lay moaning in my bed wondering what's up.

So here I sit, waiting to see how my body tolerates my soup and waiting for more poop.

I guess there are worse places to be on a semi-rainy Tuesday morning.


Monday, July 2, 2012

Praying for poop

If I poop today and poop tomorrow, I can go home tomorrow. So far no luck. The doc prescribed some strong laxatives (one tasted like chalk - Milk of Magnesia). My thought was no food, no poop. So I asked about going on a regular diet and I got real food for lunch. I had this really good vegetable soup and some chicken pasta stew, which was quite tasty too. Now I wait.

I feel pretty good; better than I have in days. So I'm in the right place. I'm on broad spectrum antibiotics (just in case), antacids, steroids and a motility drug to keep things moving and saline by IV. I also get a shot for the nausea. Then there's the laxatives, my usual antidepressant and the lorazepam by pill. I'm well hydrated and well medicated.

So we'll see how my lunch sits with me. I've had lots of visitors and expect more today. I also have my iPad, computer, cell phone, a book and a couple of crossword puzzles, so I'm not bored. And I may even go for a walk today (helps with the motility too) and enjoy the hot day.

According to my doc, my x-rays showed my bowel was constricted and then it righted itself. No known reason why (I don't think he knows).

Strangely enough, I'm not that worked up that I'm here. I wasn't feeling well and what better place to be than at the hospital where they can deal with your symptoms. If something goes wrong and I start vomiting again, they can run more tests and check me out more thoroughly.

But I am praying for poop. If you can't stop laughing, perhaps you could say a little prayer with me too.


Sunday, July 1, 2012

Hanging out on oncology

Wow! It's amazing the changes a few days can make. A lot has happened since I blogged on Thursday. I'm sitting here on this Sunday morning of Canada Day from my hospital bed on the oncology ward. Hospital bed? What!? I know, I know but the story starts back on Friday morning.

I woke feeling pretty bloated with ascities. I figured I should call for a paracentesis appointment, figuring I'd get in on Tuesday, after the long weekend. Within about 30 minutes, my oncology nurse Bonnie called asking if I could be there in half an hour. Of course, I jumped at the chance for relief and was there in the allotted time.

Last time I had paracentesis, the interventional radiologist said my abdomen wasn't that blocked and complicated, and the draining should be possible in the cancer centre. Fair enough. But the only doctor available was the doctor with whom I had a very bad experience before. I bit my lip and agreed to try his technique again. And, I have to say, it went rather smoothly with 3.6 L being drained from my belly. Using my usual comparison technique, that would be like strapping two 2L bottles of Coke to your abdomen (minus a great big glass from one of the bottles).

So I went home Friday night, enjoyed the pleasure of a visit from two good friends and indulged in a smorgasboard of munchies. They were delicious and my tummy was less squished so I went a bit overboard. As a result, my tummy hurt afterwards.

Saturday morning, it still hurt. Then I started throwing up; three times before 10:30 a.m. After last weekend where I had two days of not keeping everything down and the loss of all the fluid the day before I knew I was at risk of becoming dehydrated. So I headed to Emergency with my sore, nauseous tummy.

They got me in a stretcher right away but it took hours to see a doctor. Then Michael happened to run into the same doctor who did the paracentesis on Friday to ask him about my symptoms and he came into the ER and took over my case. He's taking good care of me.

So last night I had x-rays and they're being repeated again today to see if the slight bowel obstruction (I think) is gone/better (This doc has a strong African accent and is sometimes hard to understand). In fact, I'm just waiting for the porter to come and take me down to x-ray.

Brief interlude

I'm back and my doc already read my x-ray (almost instantaneously) and it (whatever it is he was looking at) is better. So I've been okayed for clear liquids and I'm sipping on my diet ginger ale as I write. Since it's noon, no lunch for me (no time to get it organized), but I'll get some broth and jello for dinner. ("Yum," she says sarcastically). It's clear fluids first to see how I tolerate them, and then I'll move onto solids.

I have no idea how long I'll be in here, but this is the second long weekend in less than a year I'm spending in the hospital. I'm missing my sister-in-law's birthday and the cake that accompanies it.

But don't feel too sorry for me, I've got good care and Michael's here to keep me company.