From Worse To Better

Sometimes it just has to get worse before it gets better.
Our plan was simply to paint the room, but because someone before us didn't do this properly it was a disaster.

Although I like challenges that was just huge waste of time, money as well as some mental health LOL We ended up with five people in three bedrooms, and 2-3 weeks delay, in a very rainy weather that also wasn't helping.

What not to do when removing paint inside the house?
Do not use chemicals. Until you really have to.
I also mean 'green' products, which are in fact so delicate, sometimes too delicate to work!

Harmful chemicals are obviously danger for you (lungs, skin, eyes) but not better at all when it comes to the walls!!!

Two bottles (half of a gallon) @ around $15 + HST and damage you have to repair. No, thank you.

What to do when the paint is not staying in place to be solid base for your new color?

Same you would do with any other surface; use the sand paper.
What stays, will stay, and what is gone is gone. At the same time you'll smooth the surface, so there will be even layer of paint left, with no patches with sharp edges that could cause shadows on your beautiful new color.
For next 2-3 weeks we were scratching and scrubbing, then drying the walls, then repairing the damage with compound then the primer, so the color will be evenly saturated.
Drying was really hard, because of rainy weather, no luck at all LOL but at the end it was worth every hour we've fighting.

Not that I did much if anything at all ;-) After chemo you won't tolerate the smell of any chemicals.
At the end, my little one's room in nautical style will be in blue and cream with red accents and white furniture.
The cream I chose is so beautiful, that on the worse, rainy, grey November day it still looks bright and happily sunny.
There are new challenges with the decor and organization as little one was diagnosed with allergy, but what are the dust mites in the face of cancer ;-) I'm ready. OK, almost ;-)

Oh, my diagnosis...
The bump on my head is 'nothing'. I wasn't able, emotionally, to go to details, to find out what that was exactly. Tumor is responding to treatment (yes, some may be clinically resistant) , what they can still see on the pictures are dead cancer cells.
Performing manual exam my oncologist was almost dancing and practically screaming from excitement.
After 4 cycles of doxorubicin (so called red devil) and cyclophosphamide it is hard to find.
Way to go! For everyone who needs that, I wish the same!

Half-Way Through

They will send you to check, if it's shrinking. It could be clinically resistant after all....

My surgeon, I really trust: "So... why did the oncologist send you to me?"

Me: "???"

My surgeon: "I'll try to call her to find out."

Well, I'm in such uncomfortable situation I'm appreciating not making this worse. I just wonna to be regular patient not requiring any special treatment, please.

One little monkey jumping on the bed

She fell off and bumped her head

Momma called the doctor, and the doctor said

Careful, this monkey might soon be death. 

They had the mri report, that was saying IT is not shrinking, but is no longer in the muscles.

The other thing; they sent me right away to scan and assess the bump on my head.

Everyone was asking when I noticed.

Well ;-) for sure it wasn't there when I had my hair! I don't recall anything that could help me to be more specific.

Now, I will be waiting until Monday for diagnosis.

Other than that: rush here, rush there, everywhere rush, rush!

This chemo has fatal impact on the largest organ: skin.

Combined with alcohol, they like to use to keep everything sterile, it's a disaster.

The four letter word: diet!

I promised to share the experience. Finally I'm back. Hopefully tomorrow won't be agonizing again and I could write more. I guess I'm doing more around the house rather than writing. Good for me ;-)

Between 2nd and 3rd chemo I've seen dietitian.
It appeared I'm doing everything by the book with no book. Instinct I guess.
There it is then, for someone who is looking its way in this tasteless hell. Although I may be not the best example as I wasn't vomiting even once.

It's good to drink and eat, as it's kind of pushing nausea down, back to the stomach.
Small meals, up to 6 a day, eat slowly, do not eat at drink at the same time, avoid odors (big no-no for fish and broccoli!) as well as rich flavor, fatty and spicy food. Dishes with cooked tomatoes are inedible.
To make the story short after chemo you fill like there is toxic waste in your mouth and eating something spicy may bring that taste back even 3 weeks after chemo!
Good news is: the first chemo is usually the worse one. With every next cycle you can try new things.

What worked for me, and what the dietitians recommend:

• Rusks (with jam or plain), white bread called French or Belgian, raisin bread toasts, nesquick cereal they also recommend soda crackers, dry plain cookies
• Cooked ham (for avoiding strong taste 1/2 ham vacuum packed boiled in water for 15min, remove the foil and leave in the pot to cool down), cottage cheese, feta, yogurt and add from dietitian cheese, deli meats and eggs
• Mashed potatoes (eureka!) they say also rice and pasta
• Pear nectar, water with honey, milk to drink
• Veggies were funny and long list: tomatoes and radishes. Only raw and only two.
• Fruits; I said 'apple' she asked 'pineapple?' Pineapple is really good, juicy, helping with the taste.

If you have mouth sores (happily not me) lukewarm water with raw honey should help. They recommend soda water witch is not working well with my stomach.

What is important: you have to get enough proteins: 75g per day.
I was eating skim milk powder! Witch I like. 4g per 2 tbsp. Better is only, and I was surprised, peanut butter 4g per 1 tbsp. For the same amount you would have to have 1/2 cup of pudding, yogurt, milk or soy milk.
Other products:
7g proteins you'll find in 1/4 cup of nuts or cottage cheese, 1/3 cup of tofu, 2 tbsp cream cheese, 1/2 cup of dried beans (wonder who would have that one!) or 30g of meat.
6g of proteins is whole egg. I couldn't even look at them for the first month!

Today I'm after my 4th chemo. Yes! I'm half way through!
On the third day after I was able to have regular dinner: mashed potatoes (that is super food after chemo!) with asparagus and sunny side up eggs. No pictures. Everything gone in seconds.
In a meantime I had what I call plebeian pizza, and this I'll show. I expect it to be eastern European invention.

Baked sandwiches or plebeian pizza

bread
butter
cold cuts: ham or sausage (lean, good, smoked, European style sausage)
cheese
veggies: tomatoes, onion, but also pepper or dill pickles are nice option

Spread butter over the bread. It has better consistency when baked.
Put some meat, then cheese, and veggies on top. Not too much.
Bake 10-15min @ 160 C.

No cheese will also do. My boys are allergic to dairy products I'm using margarine.
You can make them fancy adding different cheese. Blue or camembert like. Try figs or pears. Different breads... endless possibilities. Perfect for winter.

One day at the time

That's what we agreed to with one of the nurses. It appears, you can not predict chemo side effects.
But you can still survive ;-)
This time it was about pain again. Not so excruciating like after 1st chemo, but more prolong.
Yes, it follows the pattern: 1st day so-so although chemo itself didn't go smoothly. Maybe the body is weaker, maybe they tried to give it too fast. Everyone wants to go home on Friday ;-)
You can still eat and move around. The wellbeing, or it's leftover, goes down the drain around 3hours after neulasta shot.
The 4th day is agonizing, and after all pains and aches strike.
Every muscle in the body hurt to the point you can't sit or lie down. The princess and the pea under the mattress LOL
The headaches, bad back pain, arthritic palms and feet, sinuses and stomach. Enough for few people. Even with one side effect still missing: the mouth sores.
It is very interesting...
Once I said 'scoliosis', that on regular basis I can deal with exercising and swimming, and they ordered additional scan to find bone cancer. I said 'arthritis palms' they look for the cancer.
Come on, people! It's not the only disease on the planet. Try to treat patient as one piece.
Remember? You are giving me neulasta. 35% of patients complain for back pain and bone pain as side effect. I'm not different, just because of my condition I may experience it more painful, but it doesn't necessarily means of cancer.
I'm really lucky. My cancer is slow. As for today they didn't even see it spread to the nodes. Although we will know the true after surgery and biopsy.

On the 8th day someone open the door to the store when I was buying gas.
And I had to have it! Tim Hortons half-and-half. I hope more chocolate in coffee means less caffeine. 
What a beautiful day. Day 8 and 9... until winter I guess ;-) or rather next chemo LOL

Fall in Ottawa

Perfect day for feeding ducks.
So exciting!

October is Breast Cancer Month

It struck me how little I knew about breast cancer, symptoms, awareness. Anything!
I'm pretty sure, the pink ribbons where not there on the mushrooms packaging foil last year. But still I was like blind in the darkness. Not that the light would matter ;-)

Anyway, right now everyone is talking about breast cancer. I'll be happy to talk or rather write too. But really I wish they would talk a lot about all symptoms in high school.
Starting October 1st on the news, through The View, The Talk, Ellen's show, Marilyn's, Dr. Oz, and those I understand: woman to woman or professional talk. But I've seen the subject even at Anderson Cooper's.
The mushrooms, romaine hearts, yogurt, milk... you name it. And I love it!
What I love the most is dancing for cancer research. This is what I'd like you to see.
It started with McGill University, which I've seen on news. The sponsor is paying (donating, you name it ;-)) to research for every view of the video.
There is a dance competition. The winner will donate $10,000 to the charity of their choice.
The contestants
Please, watch, choose, and write your lovely comment what you like about the idea.

Waiting is pair of pink earrings. Silver and 4mm Swarovski bicone beads in fuchsia, some beading wire to connect.

I wish to mail them to the winner in 2-3 weeks, before my forth chemo. 

Being Grateful

That was my favorite holiday last Monday; Thanksgiving Day.
The weather was better than perfect! I even have half naked dude on the pictures, but not even close to handsome to show the world LOL
My husband is always making perfect turkey. I was able to bake my pear and cranberries crumble! Good food and friends. Guess last holiday until next summer.

Ottawa, Mooney's Bay and perfect weather.

Today I'm even more thankful as I realized it is Wednesday. I just found one more day before third chemo! That's what I need the most; time. I'm so slow! And have to rest most of the time. Crazy!

There will be first giveaway on my blog. Possibly, last before I'm well again.
If you want pink earrings watch me ;-)
It won't be so free, I'll ask you watch something and have opinion.
The detailed information will be posted really soon. It has to be before next chemo, which is on Friday. And I have to make the earrings!

I'd like also to write about wigs (until I remember ;-)) dietician and diet and last: never ending story which is my picc line. It actually can end. My oncologist gave up, the nurses picc team is thinking if they still may have solution. The wound nurse didn't see me yet, so maybe there is a chance. And there is something I'd like to bake... I need more time or energy. One will do ;-)

Giveaway contest starts Thursday around 2pm EDT.

Einstein needed

or going to school.

Little one is getting ready with mom
11:15 there is lunch on the table. We chat while he is eating and I prepare his snack for school.
When he is done, he goes to the bathroom, and I prepare his clothes.
Yes, usually I let him stay in his pajamas for 1,5-2 hours. This way I'm sure his clothes will stay clean. No jam sandwiches flying down ;-)
If he is in good mood he will have 10-15 minutes left to talk about school (and yes! After mom he is talkative!)  or play a little bit more. It can even be computer.



Waiting ready for the school bus


Little one is getting ready with Dad
11:40 Dad appears with fear in his eyes.
Cereal is served, but with no time there is no chatting rule. Then Dad is seating and feeding a baby to be sure there is no chatting and they can make it.
They run to the bathroom where Dad is brushing baby's teeth and the bedroom, where Dad can dress the baby.
Now it's about 3 min left before school bus comes.
- Dad, I'd like to take that blue car to school.
- What blue car?
I look with my eyes wide open at Dad kneeling down and pulling the box with hundred fifty eight cars. Of course, there is no toys policy at school.
- No, not this one. The ooother one. One of favorite games, I have to agree.
- I said blue.
- And...
There is no 'and' or 'end'.
I scream.
Not for ice cream.
Dad stands up straight and rushes to the door.
I assume, he knew what was the scream about. Even had no time to be specific LOL

Slowly we are getting back on track.

Set your goals...

low.
I mean really the lowest of the low.
Then you'll still have a chance for achievements! ;-)
Only two weeks left to the next chemo, and I'm crap.
Interesting how I change my mind depending on my well-being.
Why do they call this well-being anyway?
When I feel better I wanna to quit! Not to go through this again.

Today I decided I want to see 50/50. Think Monday around noon should be the best attendance for me. Too bad they don't open at 8 a.m. on Mondays.
Then I thought I'd rather own the dvd. But it'll take time that's why I should go to the movies.
Here it is: decision made. I'm going to the movies to see 50/50! Hurray!

And I didn't go.
Not because finally I was afraid I won't be able to... behave. Yes, I could very easily make a fool of myself.
That reminds me.

In Polish we have different idiom for that situation. We say 'make a circus'. Because it can be entertaining.
Few years back I had a conversation with my older one, who was then the little one and I was pregnant with the factual little one.
I was getting ready to drop the older little one to daycare and crazy fast drive to work. He was standing in a bathroom watching me putting on make up, and I was looking even better than I was feeling that day.
- Hi honey. Do you like mom's look?
- ekhm... You look like a clown.
My jaw dropped.
- Is that good or bad?
- Of course it's good. Now you can go to work in a circus!

Well, no any circus guarantied today.
I just simply had no energy for anything.
One hour until bed time left, that's my tonight dream.
But I'll see it!

today's achievements:
pizza for dinner, sure that was take out
but I was able to organize last week mail, and little one was ready for his picture day

First month gone. Two chemotherapy treatments. One day of school missed. And my husband is still alive after crazy, crazy week.
Next month we have more support.

50/50

I've got really excited seeing 50/50 trailer even have no idea what tv program was it LOL, but I thought I will run to the cinema on Friday!
The first minute I've seen the title I knew what's going on. My diagnosis! I'm having one foot in the grave. It's 50/50 for surviving the treatment.
Yesterday I've seen Seth Rogen being interviewed again. And now I don't know. Do I still want to see the movie?
To be accurate with my opinion I had to find it!
On etalk, Sept 28, time 10:48

Host: "...Seth Rogen's new film 50/50 may be about cancer, but that doesn't mean it won't make you laugh"
R: "We wanted to show, that even though something sad is happening there are a lot of funny stuff that happens also, and you can't ignore that side of it."

Seriously? Is it about sadness?
"Oh, honey. It's so sad your bunny felt into your oatmeal today. No, you can't sleep together. But it's just for tonight. "

It may be about fears, tears, anger and rage.
It can be about catching up, making everyday better, and planning for maybe non-existing future.
It can be about excruciating pain, loneliness, dependency and the border, where the dignity ends.
You can still laugh, make jokes and be crazy. But please, not the sadness. Why sadness?

Still alive after second chemotheraphy treatment

There it is:
My dear diary,

• Day 4: Now I remember! Forth day is the agony day. Nothing more or less. Nothing to add. Just breath, even it's hard. I'd like to write a little bit more, and I'm writing nothing. This is the day of fascinating ceilings again! 

-         Would you like something to drink?

-         No, thank you

-         Tv? Ya want me to connect the laptop?

-         Nope

-         What will you do?

Well, I’ll lie, look at the ceiling and breathe. Worse day. I remember after first chemo, I was lying on a bathroom floor wailing and my husband was shaving my hair... I didn't think I will ever like or need anything again.

• Day 5: Sleeping beauty day. You sleep, are falling asleep, or waiting to fall asleep.
• Day 6: Better day! More action LOL Showering, preparing food. And no pain this time! Even new dressing is finally working. Nurse asked me if I'd prefer to go to the clinic for change. Hello?? I'm not driving!!! For sure not for the next week!
• Day 7: Extreme challenge day. You have a meal and... rest. You walk downstairs and rest. But this is the day of making plans and small achievements. And the bread smells so good! I have to make one! Just as it was after first chemo. I should be able to walk to school bus on Saturday/Sunday. Too bad too late ;-) Next week then will be perfect!

Chemotherapy diary

yak!
They, the survivors (not me yet ;-)), are saying it's getting better. The first cycle is the worse one. I don't know!
What do I know? For sure I won't be cycle-path. I can't wait to live without the treatment! How tempting is the thought of quitting... But the truth: the second run is feeling easier. It's not what nurse suggested; that you know what to expect. I didn't expect any of that and I'm really happy the side effects are not so severe with just second run. Only... I don't know about tomorrow... scheduled pain day :-(

Dear diary,

• Day 1: Flu with muscle pain, chills and severe fatigue. Overnight (what night? 3 hours of sleep is not a night!) sweating that wakes you up and forces to change the pajamas.
• Day 2: Not bad, you can even eat with your family. Just remember about pills for pills or your stomach will kill you.
• Day 3: Disaster. Eat and drink all the time or your stomach will kill you, as you can not take more pills for pills :-( And if the stomach is forgivable then there is the nausea, and this lump in your throat that you can't swallow pill for nausea with. What a nonsense. Did I mention severe fatigue? No, it wasn't the first day. Walking down the stairs, upstairs, opening one closet, two drawers, and you'll fill like you've just run the marathon. That's the fatigue. And that's the 3rd day.
• Day 4: Hopefully will be better. Or I refuse to write about it! ;-)

As everything is getting much worse after neulasta injection I became suspicious. Am I in some clinical trial or something?
On day 4 the nurse is coming. Again. My skin forced them to come to change the dressing every second day now. It's not only me, who loves the PICC line. Now it's my skin too :-) and I believe still my medical oncologist favourite!

Turkey rice soup rocks! LOL

An Apple A Day

It supposed to be about last day, but turn out differently. You never know what life has to offer.
Then it's not about the last day before second chemo (hate it!). It's about fall and falling apples.
When I spotted small, inconspicuous apples I couldn't believe. But there they where. Even the French name is the same as in my first language: reinette grise!

Russet Apples

In the middle of winter, my grandpa used to go downstairs, into very cold basement, where he stored crates full of juicy, crunchy apples. Covered in blankets, crispy until the late spring.
Too bad it's not the best apple variety nowadays. Delicate in care, sensitive to frost and not very abundant they are almost gone.
It's not the only one defect of nowadays apples. They are on the infamous 'Dirty Dozen' list (I planned to write about one day), but with all the benefits it's better to have non-organic apple than not to have any. Just not only wash them, but also peel before enjoying this crispy, sweet fall symbol.
Definitely they are perfect as always for sharing and making friends :-)

My son won't let me die of hunger. He loves sharing.

Technically I'm prepared for second run.

Pills for side effects, pills for pills and pain killers with narcotics. How could I not hate it? In reality I'd love to go to hell or stay at home. Just not to have to go there. I only hope this time will be easier. Some say it is.

PS:

Still peeling! Not the apples. That would be too good. 

Peeling for appealing look

How long ago?
Yesterday, maybe two days ago I was laughing at Lucy's description of her house as "Seventies Monstrosity".
Well... I'm not laughing anymore. The only difference: our house is from sixties.
Right now it is a mess. We moved in boys together to master bedroom, so we could have separate bedrooms. But before we moved the furniture I said 'Why not to paint?' Especially because some of the old pain was peeling of.
Boys loved that fact, and were scratching the surface, pooling the pieces and hiding them under the bed.



Problem with peeling paint



So we are painting. We have the colors, and the tools.

Wait a minute. Not so fast! We should remove the old paint, or it will be falling together with the new one.

And it appeared to be a huuuuge problem.

Although it was almost falling down with no help, in other places it turned out it's been applied forever.

Tomorrow will be the last trial. If it's not working we better find new place LOL

It better work! As I'm still planning on living in decent place!

Pirates arrrr

The end of this summer finally feels like summer. Not that I'm complaining that I could breath for the last two months, and wasn't sweating like a pig.
I find it nice, when I'm able to cool my house just managing opening and closing windows, treating air condition as the last resource. We enjoy the weather.

Pirates, in pirates scarves

Mom, are you wearing your pirate hat? - the little one was watching me closely as I dressed.

Yes, I believe I'm wearing my pirate hat. - no option with home made haircut.

Can I wear mine, please?

So there we were, both wearing pirate 'hats' while playing with bubble swords.

Making bubbles

Yesterday I noticed I can pull my hair out easily. It's time to shave the 1cm that was left on my scalp, before it shows in every meal LOL
PS
There is something under my dressing :-( Not again!

9/11 cancer

I can't believe I almost forgot!
To be exact I was thinking 11th is on Monday and I still have time.
Guess everyone 10 and over can find its story.

Our flight from Europe to Toronto was scheduled for September 12.
That was the only one that was cancelled, and we were stuck for 2 weeks with all seven suitcases packed.
Just now I've seen that the Diverted movie about Gander 9/11 is on tv. And that struck me: we could land in Gander! Every September 11th flight had to. A town of 9,000 took in 7,000 passengers.
Why did they want to help?
And why the help for 9/11 heroes is not here?
Why we can remember the ones who were killed, even they don't need us anymore, but not the ones who stayed to fight for our future? Why are they worth nothing today?
Let the dead rest in peace, and alive live in peace.

Taste preferences or physiology of taste

Well...
It's not working! My taste buddies. I mean the taste buds are not my buddies anymore.
I don't like sweets! Terrible, as I hoped not to loose weight being on cheesecake (best American cake after brownies) diet.
Hearing from few doctors, that cancer likes sugar too I thought for a moment that maybe that's not the worse thing happening to me, but as an offset for the whole week I couldn't even think! about veggies without nausea. Then I say: draw LOL

Anyway, I'd like to thank Lucy for the courage to write every day. Nothing better than having good example.
Although don't expect that's gonna happen ;-) I know I won't stop now.

Meanwhile, I noticed that fall is coming fast this year, after cool summer. The smell of the backyard is not the same and sometimes you could miss even the heat.
But I always loved fall. With all the colors, and plentiness of heartwarming fruits and ... pumpkins!
That reminds me it's Italian plum season! I want some, and some more!
As well as for fairs, and festivals.
Tomorrow: Feast of Fields in my favourite Experimental Farm garden.

Fall at Experimental Farm, Ottawa 2010

Will see, maybe I could drive when the weather has still some mercy for us.

Perogies saved my life

I wish to know what the chemotherapy diet is. The one, that would help to cope with side effects.
But I can only share information about what I'm able to swallow. Perogies with meat. European type, with soft dough and mildly flavored filling. If I'm smart, I should order some with cooked turkey and no onion or pepper, because original ones are still too spicy!

I also had turkey soup with rice I can't even look at right now.

2 turkey tights
4-5 carrots
1 parsnip
piece of celeriac
1/2 cup of rice (short or medium grain)
salt

Normally, I would use bay leaf, allspice and fresh lovage, but the day before I couldn't eat grilled salmon because of spices then the soup had to be plain. brrr...
Just simmer everything for long time. The longer the better. 2-3 hours, until the meat is really soft. After two days with basically no food you will love that almost tasteless meat.

I prepared myself second batch yesterday, which I'll freeze for the next time. And, miraculously, today ta-dah! I was able to walk my little one to school bus.
Amazing, how children accept everything as normal. Mom with the scarf on her head (why not?), matching earrings, dressing on the arm and we are ready to go. Actually I feel lucky, as I found the back I lost while sitting on the curb. Still sounds like mission impossible LOL
More lucky, as yesterday was the pain day. And today, yesterday is gone.

Coincidental death sentence

come unsuspiciously from my husband.
'No.
No. No!' did I ever mention how, sometimes, I don't understand the simplest English? 'That's not gonna happen! You are not eating in bed!'
Oh! That's not gonna happen. Then as well I may be not eating at all! at some point.
And besides; what crumbs? I've never seen perogies crumbs...

I missed the school year beginning.
I even was thinking to pick up my older one from the school bus after the first day, but it was before I knew what time is it. It was noon only, and I felt rather like midnight so I went straight... to bed.

Last days I felt I'm dead, just no one found my body yet.
Now I know why it is about survivors, not fighters.
There is nothing to fight about. You just lie down until you are able to move again. Standby mode. Then one day start with your baby finger for training ;-) hallelujah!
After ressurection you know you are alive. Although the pain stays.

Hot air balloon festival

Not for us. Not this year.
If there is the next year, we will go to every possible festival, event in the neighborhood.
Talking about neighbors, she is in the hospital again. Third time this year. Zero immunity.

Hot air balloon festival, Ottawa 2009

First I've seen my shadow, and fast turned into the bathroom to check my new haircut.
Well... The medical oncologist seen before first time said 'You will want to cover it after second run' I can see now I have to cover it!
Talking to her we discussed my picc dressing problems as well as appointments that were booked on not right days for me. She asked 'Aren't you pulling your hair yet?'
'What's the point? Wouldn't they go on their own?'

My husband said 'The older one has exactly the same hair! Now you can tell why.'
Don't you worry, honey, Dad doesn't see well. You have very nice hair and quite good cut. Nothing to be afraid off before the first day of school. Mom's hair look like old fleece, and now, when it's short it's a disaster, but I wasn't able to wash them. Sooner or later they all will be gone anyway.
My advice: do this until you can. Before chemo, before picc line. To be comfortable for the last days you are still not bald.

Maybe I don't want to go there.
I realized I don't even know what my chances are.
Maybe it's not worth.
And the fact I have to many kids, that can't walk is not helping.
I always knew they are noisy. But this is misinterpretation in the little one case. The house is falling apart when he is in. No place to hide upstairs, no place to hide downstairs. Yoopi! Winter is coming!

PICC calendar



crabapples


"Crap apples! Crap apples!" I used to call whenever I see them. And then the older one would laugh so hard he staggers and can't speak. I had a chance to do it again :-)
There is a lot crab apples trees in Ottawa. I mean a lot! Beautifully covered with flowers in spring and heavy under the colorful fruits in fall. Last warm touches before long winter. Something I can smile today even with all the crap.
Hopefully to set everything right is so difficult and later routine will be much smoother.

And there is the calendar with all possibilities what may happen.

• Aug 26 morning, PICC procedure: reaction to transpore - latex-free, hypoallergenic, transparent and perforated (for breathing) plastic surgical tape. I get the piece of regular picc dressing  to test on my free arm.
• Aug 27 afternoon, change of hospital dressing for the one I was testing, as there were no reaction on left arm.
• Aug 28 evening, my arm is burning. This is the reaction to burn net dressing (what a coincidence!) the nurse generously gave to me; red rush.

• Aug 29 morning, I woke up with small open wound. They let me test the dressing, but not the orange edge with glue. Just the inside. Hurray!
• Aug 30 morning, Another blister. Obviously when I'm sleeping I'm not aware of protecting band slipping down and slightly rolling of the dressing. I had to use bandage to secure the plastic end as I had a feeling I'll tear out everything any minute.

my scab and blister

• Aug 31 noon, The nurses coordinator offered someone will come. I called to ask WHEN will someone come for the following visit, as it can't be the same day as chemo, and no one called me yet. No need to treat this as emergency as I was in the hospital anyway. They changed wounds causing dressing using a lot of gaze and paper tape, gave one more to try for future together with information that they still have more options left LOL  The nurse was using bare hands even everything else was sterile. She said she washed them, I answered not to worry, if she causes infection I'll be happy to go to remove the picc! LOL

It wasn't bad day. I was recognized by my surgeon, I'm not just a number, and also met nurse training all chemo and radiotherapy nurses in biggest Ottawa hospital. She advised me to ask for special cream to protect my skin. I've got information for fantastic ('ve seen the pictures) wigs at very, very good prices.
Not bad. Huh?
They also liked my DIY picc dressing protecting dressing :-) I made using 100% cotton sock.
I'll share the information, but now I'm already sleeping.

PICC line

Medical term for the thing is Catheter, but I definitely think in this case C stands for crap. I call this Preferably Involving Complications Crap.
I didn't like it from the first sight, and now I truly, deeply hate it.
In full accordance with my medical oncologist's preferences PICC line was inserted on Friday morning at Civic Hospital. In past, when the bone scan was done, I had chance to ask if this is their habit to be late for appointments and it looks like. They were ready for me 45 minutes late. Hard to imagine, when you are booked for 8am. What happens to patients coming at 4pm? Other than that everything went smooth, no adjustments, no pain, no epinephrine in freezing and nice, small dressing.
The problems started later, because the dressing has to be changed within next 48 hours.
One problem: you can always meet the person for whom 'within 48 hours' means Sunday even the nurses don't work overnight, so no one would come early in the morning. Other thing: it's weekend! Never do that just before the weekend. First you'll ruin the last days of freedom. This is big problem to find anyone working. And too bad, not everyone in this industry is being pleasant.
Because of the fact, that my 48hours window was gone on Sunday morning I spent over 3 hours on the phone (you know how irritating it is to tell your story again and again up to 10 times??) and some more my husband. First with CCAC , but they have to talk to agencies, then, on Saturday because nurse didn't call me and it was afternoon already I tried to call the clinic thinking it will be easier for them and for me. Silly me.
It appeared someone changed my account as discontinued service for Saturday appointment.
Nope, obviously no hope for me, I had to call case manager again, and finally other clinic which had nurse for me for Sunday called back with the offer I couldn't refuse "Will you come at 1:30?"
Well... yes, of course I did. But I don't enjoy such short term. 20 minutes may not be enough to get to the other part of the city.
And the best part is... I never asked for the nurse! i was begging from the beginning to book an appointment in the clinic so I will know when and where to go. It took them 5 minutes to call me back with this information when I said everything is ok, I'll go to emergency. Do you really have to go to emergency with things that can be scheduled???
There was one nurse, no any patient and three receptionists wearing tanks and flip-flops.
It doesn't make me feel better that the service 'is founded' by OHIP. Come on! Those are my taxes!
The nurse advised me to file the complaint. Obviously better organization would save time and nerves.
To bad I have to still deal with them! They say it is allergic reaction, I believe it's just sensitive skin. It is what it is! No matter how you call it I have that! I said before, I have every possible side effects. Even the protecting net given to me generously by nurse changing the dressing burned my arm! Just hopeless ROLL

Thanks to Irene

My little one just turned 5! Lovely, cute 5!

We didn't have big celebration. Fortunately, as the CCAC screwed my appointment for dressing change on my new picc line. But about picc I'll write separately not to ruin this day. There is a lot to write about, and I should share my experiences and opinions someone could benefit from.

Anyway, just 2 hours before guests should arrive I had to go to the clinic, and the procedure takes minimum 45 minutes. They couldn't make it better.
Later that Saturday we had tons of good food, birthday cake and presents, and on Sunday... kites flying!
Or should I say kites fighting. Happily little one didn't fly with the big kite.
The wind was really furious, and the Irene's clouds looked spectacular! You don't see view like this every day. And I'm happy, it finally turned out to be tropical storm rather than tornado. Wooohooo! That was my older one screaming, could be working as engine whistle, when the kite was swooping down.
I didn't see the pictures yet, only on camera screen, but I'm sure there will be something to choose from.
You'll see I'm living in a nice place.

Then, we were flying kite and lying kite.


flying 3D kite

 
 
 And this? Is it tornado cloud or what? ;-)
Thanks God Irene slowed down. I bet everyone still remembers Katrina.



flying 3D kite

We were not the only one crazy about the wind.

Ottawa River

This way we spent the afternoon laughing at Andrew Haydon Park. I love this place for walks, when weather is not warm enough to seat at the bench. We are coming here even when the snow rests on the ground to feed wild ducks and geese. And when it’s hot, there is fantastic playground with water structures and pumps on the other end of the park.

You can’t ever get enough of the view like this.
We will come back.

When life gives you lemons

Well, the lemon tree I'm growing is actually good, not so sour kind: Meyer lemons.
Except the fact, that both plants I brought home from Richmond Nursery, I also bought kumquat, were sick, and I'm practically fighting all summer with spider mites. Interesting how aunts took care of other pests on kumquat.
Anyway, in real life the lemons you get can be really sour.
Why is the neulasta so horribly expensive?!
Thanks God we have the coverage if we fulfill insurance company conditions, but my friend, working in the same office, not big one, we are going through this together. She still doesn't know. They are saying maybe 80% and even 20% is a lot!
Yesterday she asked me if we could go to try wigs together. I don't know. I'll have my first chemo next week. I'd like to book something the same day, as this is the same hospital and she still doesn't know her schedule.
Instead I proposed we should have a coffee. I had my PICC done yesterday, she has an appointment to install her port, few more days we will be both completely bold, then big decolletage, minimum clothes, as it's still summer et voila!
At least there is someone to laugh with. We have enough everyday fear and pity.

Yes, cancer is not something to jump about, but we still have the chance. It's not the plane crush. And even then there could be Hudson River ;-)

Very easy recipe for papaya smoothie
I overheard Dr. Oz that papaya is #1 in cancer diet, and I strongly believe it's tastier than any green juice.

3 cups cubed papaya
1 cup orange juice (yes, the best if home made)
2-3 large ice cubes

Bzzzzzzzzzz (that was the blender)
If you need use some honey to taste.

I'm not sure you can't find recipe like this on internet. Like I had no idea beef and kale soup exists and you don't have to invent it again. Let's say those recipes here are for me. I invented them, tested and now I want them not to be lost with my not functioning memory help.

All about reading

I was surprised around two-three years ago, I can read novels in English and enjoy it without dictionary. I can even argue with narrator ;-)
I felt I lost some time. All those books I'll be able to read...
The good thing about reading: really improved English writing, the bad: I use to read everything from cover to cover including flyers you can find in your mailbox :lol: and throwing out the magazine or a book i treat like a sacrilege. Maybe not good sign for potential old age, but there still is a chance, as I like libraries.
Lately I've read in metronews "Psst! Seniors, need a ride?" about Wheels for the Wise.
Interesting and controversial idea with no rational reasons, I would say, inspired by business owner grandmother.
"She (the owner) is hoping to provide services to more people who[...] don't necessarily fit with the city's Para Transpo Program."
Do really people with dementia, usually seniors have no one to take care for them? That's sad.
I understand my 5 or 10 years old can't drive me, but why not 20 or 27?
How about people with cancer? They usually don't qualify for Para Traspo services. How about Wise Wheels? Lets see... chemo? 2-3 hours? That would be $135. Is that really inexpensive solution?
For me it's just regular business. Something like having personal caregiver or attendant just for few hours per month. Wouldn't expect much often with the price.
After watching another business advertising video I'm also questioning myself if this is just another business for expanding her entrepreneurial wings in Ottawa Ms. Mitchell.

Hard to write

anything...
It could be worse, but it is stage III.
No sign of spreading.

R is for rainbow

Beautiful!
We've seen beautiful, giant, full, double rainbow! Two complete semicircles. I was only able to take a picture of leftovers, but someone captured more

I was thinking about writing posts in alphabetical order. There would be:
About breast cancer
Breast cancer
Cancer
Dignity or Denial
Elephant? (there is often the elephant in the room no one wants to talk about)
Financial aspect
Getting better....
I'm pretty sure one round wouldn't be enough.
It's funny like the ideas of titles and jokes are disappearing when you have nothing to write them down.
The advice for today: blogging you should always have something to capture your thoughts. They may never come back.

Good news!

I can say the blog became "le secret de polichinelle". News is spreading surprisingly fast.
Hopefully IT is not so fast. It didn't spread to my lungs! (that was the good news ;-)) The rest I will know next Monday.

Every time I go to the hospital for tests I'm pushing the nurses to tell me something. Not a smallest chance! You have to be patient to see your doctor. Monday then.

Today was bone scan.
From the very morning, as they need radioactive material to get into your bones. At least two hours of waiting. Not necessarily in the hospital though.
We went home, I had my breakfast and was frantically looking for my linen pants I was wearing last summer. Well, to bad. I was pretty sure those were buttoned, but, no. There was a zipper, and you can’t have metal for the scan. 
I told my husband I'll keep my navy blue silk blouse on, and just change jeans for some hospital pajama bottoms. I was sure they will match, as most of them are blue with patterns. Almost right. All of them were plain blue.
The technician is really caring about your comfort. You have to lie possibly comfortable, as it takes between 30-45 minutes, and better don’t move. She positioned the pillow, according to my instructions, putted another pillow under my knees, and tidily wrapped me in kind of wide belt fastened with velcro. It was like wrapping with towel after the bath, the only tiny difference with your arms inside. What an idea! :lol: Where do they take them from?
The are two detectors which go around, and very close taking pictures.
Even you are worn they are close, it still may be shocking when the detector over you goes down, and down, and down... touching the hair and possibly even eyelashes. I was thinking about slipping off and escaping the danger, but they also put some thick elastic on you feet. When I imagined myself fighting with the machine, and the 'belt' and elastic it was really hard not to laugh and the most important is to stay still.
After all the technician will take few more minutes to check with the doctor the quality of the scan. If you were behaving well ;-) you are free to go.

Free giveaway

Blogging takes time, but I know how to sign my pictures :-) And I can switch between English and Polish if I need. I'm becoming an expert! Also with breast cancer testings.

Last week I've seen the surgeon. Good thing is: I trust her! I can imagine it can be very important.
Talking took a lot of time. Nurses, my doctor and social worker... all around 3 hours!
They care more and more as we go through this. Every patient gets nice organizer.
There is space for all your medical practitioners' information, appointments, questions, drugs you are already on... you name it. And then some stories from survivors and information about cancer. Don't go to far with reading. The farther the worse scenario. brrr...
They will also give books for parents, and a lot of practical information for patient, everything in writing.
It's in everyone interest, as you may expect forgetting about everything including your date of birth :lol:
Date of birth... I suspect they could operate on somebody's kidney instead of his knee or something like that. During one visit you will confirm that information several times. But that's just another proof they care.
Then, they will book all of the appointments for scans leaving you for two days plus weekend, and you are able to forget about everything! It's still so unreal you can again feel healthy! Not too long though.
We try to enjoy this time and weather eating, talking, drinking and laughing. Kids love this 'normal' schedule, regular rutine. Next week maybe Greek Festival!

Time for heart scan.
Comparing to biopsy with local anesthesia not really working it's spa like experience!
With the second shot she asked me - Which arm do you want?- (really I hope to have both)- The same or the other?
- Are you able to use the same?
- Sure, not a problem - that was quite surprising after labour experience with older one.
- Then maybe the same? I may need IV the day after tomorrow.
It wasn't a problem. It was better than regular blood test! Next half hour you just lie comfortably, and the machine is so quiet be careful not to fall asleep.
You may have metallic like taste under your tongue, as a side effect, although it's rare. They say one patient per month, and the patient of the month of August was me :lol:

Wonderful husband

I would say wonderful husband, boyfriend, girlfriend is mandatory for situation like this.

Shopping for buns at Costco, my husband remembered that walnuts should be part of healthy diet to avoid breast cancer. So he bought some!

Too bad, we were talking in Polish about the benefits of the nuts. They are saying handful of walnuts every day decreases the risk of breast cancer up to 60%!
He brought home big bag of pecans! I'm still laughing.

He also bought glass electric kettle, we were arguing about in past.
Is it so bad? ;-) He pays attention to what I'm talking about and remembers...
The kettle is great. It even has light inside! So when the water is bubbling you can see red reflections.

Best recipes for life

On Wednesday, after I had appointments for mammo and ultrasound booked I drove boys to taekwondo.
I was doing my shopping when I spotted recipe box on sale. Isn't that interesting? How they put those things on sale like people would only cook during summer? Not in spring or winter or fall ;-)
Unfortunately I couldn't buy it. I don't feel as I need anything. And with soon no income and all the prescriptions...
After I had that mammo on Friday, going as usual to Monday class I bought the box.
It may happen they will need some advice in life. Better to have to many than none.
There is the first recipe

Beef, barley and kale soup.

300-400g of beef 
1/2 cup of pearl barley
2-3 carrots sliced
1/2 parsnip sliced
1 celery stalk or celeriac also sliced
2-3 potatoes quartered
bunch of kale

Beef: blade simmering steak is good, but you have to simmer it for few hours. Shank is perfect.
Put meat and rinsed barley in a pot. Add water to cover, season with salt, cover and cook until tender.
Then add all the root veggies, and potatoes. Cook for additional 30 minutes.
Clean kale, and pull the leaves to remove the main vein. Chop the leaves and saute with ghee or oil olive until wilted and add to the soup. Sometimes I add good bouillon cube. No msg, no artificial, etc...
Garnish with parsley, and yogurt. And... voila. 

Beef, barley and kale soup

Only one problem. My husband loves it, my older one needs more, but the little one... :-(

- Mom, do I eat those green things?

- Yes, and it's healthy.

- How does it taste?

I don't know. Probably if you would ask a cow... - It's kale, and it smells like broccoli, when sauteed.

We may stay with broccoli which he loves.

Any ideas for edible kale dishes?

Sleeping again

First long night. Or rather shorter than when you check the clock every few minutes.
The cancer is so big (7cm) they have to shrink it with chemo. Then they will be able to remove it.
And more tests coming. The giblets. Heart, liver, lungs and bones...

The social worker said we have to talk to boys. Easy to say.
The older one heard "cancer". No longer I had to remind him about brushing his teeth.
I bet you have no idea what that means. I still don't know.
She said - You set the example. You teach them how to cope.
I hope I can be good example.
At boys' taekwondo they say "You never fail until you stop trying".
But there has to be the end. I believe it's about distinction between dignity and being miserable.
I should take care of them not the opposite.

Anyway, the family gets closer. Very often even four of us are lying in a queen bed.
Today it was only me and boys. Little one is crazy about it.
Wrestling I said - Be careful. You know this breast is sick (still with big bruse after biopsy). They will amputate it.
- What?
- They will cut it out.
- Oh man!!! That's horrible! But then you will have a replacement?
- Oh yeah. I'm bionicle mummy :-) I'll just ask to mail me the replacement parts.


Looking for cutting out I found something interesting http://www.breasthealthproject.com/reducerisk.html
I don't like chemicals, but as I said before, I'm the junk generation. Hope it'll be better for my children.

Nothing to do with fashion

Today is the day. I will see the surgeon, who will tell me what stage it is, and what are my chances. Can't wait!

But first the MRI experience.
Good it was holiday. There was free parking! The fees are killing patients. Everyone wants to claim them as medical expence on personal taxes return. My friend is saying they are working 24/7.
Anyway, good I was with my husband because the place is hard to find. Main entrance from the back and kilometers of halls.
And then they were: hospital gowns. Is it one size? Mmm... I would have to say I'm lucky. They fit!
Other than that... only one colour and cut. I guess the cut is to be comfortable, but only for the medical staff.
Personally I hate the pattern "hospital property". Do they expect theft? Gown for the third date? Anyone?
They told me: two gowns for the MRI. One with opening in the back, the other one in front.
So I did. First one was clear blue, no any fashionable pattern I fastened at the back. The other, light blue with chequered pattern I put on like you would wear a coat. Looked logical to me, but it wasn't.
So I changed before iv. Why do they propose to change after they stab your arm and attach something anyway?
But the best was still to come. The MRI "bed". I could hear my younger one shouting - What the! -
I'm always waiting for more, terrified, but that's enough to express his surprise.
You'll spend half an hour not moving, listening to the music of your choice.
Chorus of angels please :-)

Cancer Screening Program - Public Information - MOHLTC

Cancer Screening Program - Public Information - MOHLTC

Feel free to use 'time to screen tool' ;-)
I guess I didn't take proper care of myself.
But now someone is doing it for me. The physician called to check on me. And my doctor is on vacation... not bad start. I hope ;-)

Chances are

Waiting is killing. And not knowing.
What if?
What if surviving rate is 20% for next 10 years? Oh yeah, I love math.
Would that be 2 years for sure? First one lost as the worse year because of the treatment?
Tomorrow I will know.

In the morning the little one will go to play at his friend house. His best friend ever I should say. Coincidently born on the same day! Still hard to believe.
I was very happy his mom called and invited us.
- Will you please give me your address?
- Sure. You have something to write?
- I'm all ready.
Then she told the name, spelled and said - You know, it's ... like this animal.
I thought (usually I think fast and a lot, and I guess that's killing me to): of course I don't know unless it is the main character in children song. Not with my poor-poor English, but your spelling was good enough, and just in case I could check 411
- Of course I know - I said - I will be really happy to meet you.

PS
It's interesting for me how they say 411 in English. 4-11 not 411.
I can say not bad, as I did French numbers.

Poetry and other thoughts

I can see my writing is not any poetry or something. Not even close! :lol:
And it still can be worse! As spelling check is not working. What a day... Yesterday it just stopped working.
When I'm in not good mood, and obviously it happens a lot lattely, I go to google translator.
I'm Polish. That's why the English is so poor. But the polish translation is ridiculously... ridiculous! Senseless.

Let's think about the causes of breast cancer then.
It's NOT smoking or drinking. Too bad it's too late for me.
I suppose main reason is being woman. This is after I talked to the physician. She went through this, and she is saying it's random.
Looks like good explanation to me. But is not helping at all with early detection.
You may have the gen. Or you may have your children late and high level of estrogens, that would probobly be me. But it's not indicator.
I would say: do the breast exam, and from time to time get crazy. Don't be shy. Ask for mammogram! It's a myth: Mammo doesn't hurt. I only asked, if the kind of pulling feeling is normal, as I wasn't sure I should bend my knees maybe :-)
Yes, they are saying radiation will cause the cancer too. But it's 6 in 1,000,000 million! patients, and it can garantee you early detection.

And I hope it's not too late for me... What choice do I have?
I feel, we are junk generation. With all excitement for new chemicals, cosmetics. Anyone ever asked about the lead in any paint? Not in 60s or 70s I guess. Childhood in junk.

Results

Since Friday I know the results of the biopsy.
But I'd like to start from the beginning.

The more I read about the cancer (brr... hate this word!) I realized every mother should educate her daughter. Maybe my experience could help someone. And there is how it started.

Having the requisitions and then appointments booked I was doing well until I did the research and discovered I'm going to one of the best centers in the world. Then I started to shake and couldn't swallow, because of huge ball in my throut. No wonder anxiety pills are so tiny ;-)
Just two months before my 44 birthday I had my first mammogram and ultrasound and it didn't look good. In fact it looked so bad, that the radiologist made bad but loud comment. One black sheep between all the angels I guess ;-)
Everyone is perfectly trained, polite, kind and funny. And of course it's not helping to escape panic and fear.
Even long list of terms and conditions of rapid assessment, diagnosis and support program(RADS) is not long enough to distract.

Three days later: biopsy. Isn't not wearing even the deodorant annoying?
I was still joking until the freezing didn't really work while taking 3rd sample and there were 3 more to go!
The doctor said he had patients who couldn't let the biopsy. You can not do that. You have to check. You have to try. You have to make informed decision.
If there still something you can decide about.

Last Friday I had to go to see physician with my unbelievably fantastic husband.
And again: they are perfectly train. The introduction... There were few moments I felt I was off the hook.
The results are: invasive ductal carcinoma.

Finally,

I was thinking about IIWII for quite time. Now, fighting with the technical side of the blog (not mentioning English!), I have the distraction I need.
I like the question 'what if...?' so much every occasion was good to ask.
Did I do everything I could or could I do better? Was I right? Or was I perfect? Can I still make it perfect?
Slowly I agreed you can't have anything you want at once. I slowed down. Just do your best.

The full title is: it is what it is, but it doesn't mean you can't make it better in future.
Today I'm not sure about my future.
Today I'm waiting for the sentence, not believing in mercy.
Few more days, and I will know the rescue plan and prognosis for our family life.

Oh yeah... forgot about the will too...