Wednesday, 31 August 2011

PICC calendar


"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.

Tuesday, 30 August 2011

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

Monday, 29 August 2011

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.

Saturday, 27 August 2011

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.

Monday, 15 August 2011

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

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

Thursday, 11 August 2011

R is for rainbow

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
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.

Wednesday, 10 August 2011

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:

Monday, 8 August 2011

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.

Sunday, 7 August 2011

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?

Friday, 5 August 2011

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
I don't like chemicals, but as I said before, I'm the junk generation. Hope it'll be better for my children.

Thursday, 4 August 2011

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 :-)

Wednesday, 3 August 2011

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.

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.

Tuesday, 2 August 2011

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.

Monday, 1 August 2011


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.