Everything Tastes Better When You Can’t Eat It

Friday, December 15 (Photos of Frankfurt, Germany)

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Nice Tie Sculpture!

I’m home now and we have had quite a bit of snow here in Toronto.

It’s beginning to look a lot like Christmas.

My Lufthansa flight last week went as planned…wasn’t sure whether the pilots would still be on strike, but they must have settled because all was good.

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Bobo has been watching too many of those Border Patrol shows late at night, because when the declaration note came for us to write down what we were carrying, he told me to mark “YES” under “Are you carrying any type of food, dairy, seeds, nuts, blah, blah, blah.” He said they were going to confiscate my stuff anyway, but at least I wouldn’t get charged and go to jail.  Really?  Really?  Do ya really think I’m going to jail because of some cake?  I figured I could talk my way out of it, so I told him stay quiet behind me while I spoke to the customs officer. 

 

img_4542I think the customs guy got a kick out of dealing with me because he was laughing his head off after our brief little discussion about what I was bringing into the country (I think they are paid to look very mean with no hint of a smile so you’d crack under pressure).  I told him I bought some Christmas Cake (Stollen) and I was sure it had nuts and seeds in it and I also had a package of stuff for my Gluhwein.  With a twinkle in his eye, he asked, “And What Exactly is Gluhwein?”.   “Oh, it’s amazing,” I said.  It’s like mulled wine and you have to put some seasoning things in there like cinnamon, cloves, and cardamon seeds”.  It’s delicious.  Those are the seeds I brought back.  He chuckled and said, “Is that all you have to declare?”  I thought for a second and said, “Yup” and he let us go on our merry little way.  Was going to tell him we also hauled a big antique clock for my dad half way across the world in an extra suitcase, but thought better of it.  The less said, the better.  If he was going to let me keep my Christmas Stollen and Gluhwein kit, I was happy.

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If they took my Christmas Cake, I wouldn’t have been too upset ‘cause I can’t eat it anyway because it probably has wheat in it.  I am truly bummed out about all the foods I have to stay away from for 3 months.  It’s been a difficult week scrounging recipe books for things that have no dairy products, eggs, nuts, and is gluten free,  I made some muffins and cookies according to this new criteria and they tasted like shit.

Don’t you know, everything tastes better if you can’t eat it.  Sigh.

img_4560Two more things I wanted to tell you.  When I was hooked up to the Global Diagnostic Computer in Germany, it indicated that I have traces of Lyme Disease in my body.  May have been there for a long time.  Lyme Disease comes from a Deer Tick and screws up your hormone balance and immune system (so your body doesn’t recognize cancer is a threat).  Wondering if this could be the root cause of my problem.  Sent a blood test express post for analysis (which I was told may or may not be accurate…sometimes it reads a false negative).  Waiting for the results.  Dr. Mariann told me if it does come up as a positive reading, not to worry about it because she can cure it in two years.

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Going to have an MRI next Thursday and will be seeing my radiation doctor on the 28th.  That should be fun.  Especially when it will look like my bone marrow is completely full of cancer again and I tell him the thing in my neck is not cancer.  I’m not doing anything for at least 3 months until the dust settles and I have another MRI.  Then I will have a clear picture of whats going on, if anything.

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I’m reaching my limit on my free wordpress blog space.  I’m at 85% capacity.  Not sure what I want to do.  Don’t really want to pay $18 a year for my own domain, so I may open up a new blog soon.  We shall see.  

Hoping my followers will keep following me! 

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Life is Grand

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I apologize for not writing in a very long time, but I’ve had too much going on.  A few new developments in my life…some good, some not so good.

First, my medications from Germany got held up since early September.  UPS and Canada Post are having difficulty delivering packages with alcohol contents because they think it is a bomb.  Canada Customs no longer allows anything with alcohol get through without a lengthy delay, so I’m waiting for a friend to bring my tinctures back home with her.  She’ll be back in early November.   Thats 2 months without medicine.

My last “report” from my urine sample (in August) said I was toxic/acidic and to come back to Germany for an intensive treatment.  Then I had an MRI which evidently shows cancer in my soft tissue (para-spinal) at C6 (bottom of my neck) and some new spots in my lower back (L2-S3). 

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My radiation guy wants me to participate in a clinical trial where he would radiate that neck area with two really high dose treatments.  Trouble is there is a 10% chance of it fracturing my neck.  

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I was told not to worry, they would take good care of me and would put my neck in a brace. 

I asked him if there was a chance that I would become a paraplegic and he kind of skirted the issue and said…”Yeah”.   Well, guess what?  As Maria O’Kane would say…I don’t like that plan.” 

Another alternative is to do 5 low dose radiation treatments but I don’t think its as effective.  “But wait a minute,” I said to my dr.  “I thought the last time I talked to you, I reached my maximum radiation allotment.”  “Oh no, you can have more”, he responded.  Really?

what-the-hellWell, I’m not entirely convinced I can have more radiation.  As far as I understand any more radiation and I’ve upped my chances of getting leukemia, non-hodgkins and various other cancers.

Besides, I think my thyroid has been fried from the last set of radiation treatments on my neck as there were many nodules found throughout my last ultrasound.  My family dr just told me that if I live to old age, I will need to be put on thyroid medication because of what they already did to me.  Why didn’t anyone inform me of that before?  Plus I think there is a part of my lung that got fried too. I need my voice to sing in choir at church.  Not planning on doing anything on my neck at least until after Christmas Concert. 

I know this may seem like a long shot, but I’m hoping that what they think is cancer in my neck is inflammation from going to a chiropractor in August.  It really hurt from all the adjustments and I had a bump on the side of my neck.  So I bought some special cream/oil and the bump went away.  

trustNow I have to convince my onc. to redo the MRI at his hospital instead of the other one because I want a second opinion.  My reasons are that they screwed up too many times before for me to believe them.  Remember when I thought I was getting C5 radiated and then they told me it wasn’t what they thought it was?  Remember the two times they said it was in my bone marrow and it wasn’t?  I had to have a bone marrow biopsy to prove them wrong.  And how about that blood test that indicated I was pregnant when I wasn’t.  Oh and how about the time I was told the cancer spread to my lungs and I was going to have to get it drained in 3 weeks if I didn’t go on chemo.  Didn’t happen.  Seasonal allergies.

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Sometimes I don’t know how I stay sane.  I don’t know if I’m right or wrong this time.  Time will tell.  My tumour markers from my recent blood test are normal.  What gives?  Counting on some little piggy stem cells to fix me up.

So I booked my ticket to Germany.  Bobo is going with me.  And we are going to see the Christmas Markets again!  Yippee! 

In the meantime, I’m going to the Naturopathic College and getting weekly Vitamin C IV’s because that treatment shrank my tumours before.

So what else is happening besides having to worry that my neck may break? 

I’m coaching a junior boys volleyball team at school.  I also am starting to teach adults with cancer at Art For Cancer Foundation.  I volunteer as a guest artist.  This week I participated in a video for this charity organization.  I’ll link it to my blog so you can see it when it comes out.  Got my hair done in time for my interview.  Finally found a real, organic hair dye from the States called “Hairprint” which I like.  Thanks Stella!  I finally used it.  Don’t look like a granny anymore!

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Next I’m venturing in some new interesting territory.  I applied for a scholarship for an Advocacy Training Workshop for The Canadian Breast Cancer Network.  I didn’t think I would be selected because I wrote my application at 3:00 in the morning the day before it was due, but guess what?  They want me!

Not entirely sure what it involves yet.  All I know is that I’m getting free food and a night at the Pantages Hotel in Toronto.  They are going to teach me how to become an effective communicator.  And I think I get to share my views on what its like to be a metastatic cancer patient to a room full of big wigs and perhaps the media too.  Not sure they are going to like what I have to say, but oh well, too bad.  This could be fun.  It’s interesting what life throws at you.  Life is grand.  

Dr. Phobia

4 moodsI’m convinced I have a mental illness.  I call it Doctor Phobia.  It generally happens when I have to go get results and I’m kept waiting and waiting and waiting a long, long time for an appointment.  I am on time.  I am early actually.  But they (referring to my Dr’s) are NEVER on time.  Not my family Dr, not my Oncologist, and not my Radiation guy.  In fact, you know how they say “Patience is a Virtue”.  I do not have any of that when I have to sit in waiting rooms wasting whatever time I have left on this earth.  Besides, I’ve got a MILLION other things I’d rather be doing rather than sit there.

So todays story goes like this.  I had a radiation appointment at 10:30 on Wednesday.  I was suppose to go to a staff meeting at lunchtime to fill the teachers in on our Spring Concert, which, by the way, I am directing.  When I got to my appointment, I asked the secretary if he was on time because I really needed to go somewhere else at 11:00.  She said there was only one person ahead of me.  I’d probably see him by 10:45.  I went downstairs, had a drink, got myself a sandwich.  Went back and waited.  At 11:00 I asked when I’d see him.  She said there were two people ahead of me.  Wondered about that one since I was told at 10:15 there was only one person ahead of me. Now there were two?   Hmmm.  Pondered what I was going to do.  Should I stay or should I go?  If he tells me I’ve got more cancer I wasn’t going to do anything differently anyway.  I was still going to go to Germany.  

So the new me, decided to ditch the doctor’s office.  I knew Maria O’Kane would have been proud of me.  She used to tell me it was fine to be late and cancel if you didn’t want to go!  She had guts!

I wasn’t sure if it was the right decision, but I had things to do and I really didn’t want to stick around while the meter was running at $4.75 per half hour.  So I asked the secretary to get him to phone or email me the results.  She told me to phone the nurse’s hotline and ask for them.  I did.  Three times.  They said they couldn’t do anything for me…I had to phone for my records.  I emailed my Carepath nurse and asked her to get my results for me, but she’s on vacation. 

Then I started stewing about how was I going to find out.  First I don’t want to know the results.  Then I’m obsessed about getting them.  So I phone his secretary and told her to tell him I was going back to Germany next week and I had to know by Monday what vertebraes had cancer in them so I could point them out to my doctor to get more stem cell injections. 

He just phoned. Apparently I’m fine.  Nothing showed up on the MRI.

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He sounded really, really surprised.  “How are you feeling?” he kept asking me.  “I feel great”, I told him.  I don’t think he could believe it since the last time I saw him I was yellow, my bone marrow was lite up like a Christmas tree on the MRI and my hemoglobin was so bad I needed a transfusion.  But all is good now.  He said, “Okay, how about we do another MRI in 2 months?”  “Sure”, I answered. 

YIPPEEEE!

Italy here I come.  Germany, you too. 

Thanks for all the prayers family and friends. You know who you are!!!

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P.S.  I had my Vitamin C I.V. today.  My Naturopathic doctor could not believe my hemoglobin level went from 78 to 126 so quickly without a blood transfusion.  I think she wants a bottle of the stuff I got from Germany to try it on her patients!

I will try to blog my escapades with my friend/colleague Mary when and if we get wi-fi as we are travelling across Italy.  I can’t wait.  Ciao for now!

Miracles Happen, Right?

IMG_2225Tuesday, January 5

Would you believe that I still have no results pertaining to my lung yet?  I was checking all day, scared of what I might find.

Saw my surgeon.  He is a good guy. Asked me how I was doing.  I’m okay, I told him, but it looks like I have mets in my bone marrow again… although I don’t really believe it because this happened to me before when I came back from my cancer treatment in Germany.

Oh?  Why did you go to Germany?

Now there’s a loaded question.  This is what I told him.  Hmmm…it might be because they almost killed me three times here.  Or maybe it was because the hormone treatments stopped working and they told me they couldn’t do anything for me anymore except manage the pain.  That’s when I decided to high tail it outta here because at least over there they thought they could keep me alive for many years to come.

“Well it looks like Dr Sahgal is happy with your progress,” he said.  “Nothing going on in your spine.  Your bones are growing back and your hardware is good.”

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“Yes but my oncologist is not happy with me right now because I’m not doing what he is telling me to”, I replied.

“How did you find out about this place?”, he asked.

“My friend knew someone who went there”, I told him.

Short and sweet and I was out of there with an appointment scheduled for next year.

Before I saw him,  I was talking to the nurse in the room by myself (she was the one that nicknamed me “The Screamer” after my surgery).   I asked her if she would mind looking for my chest CT scan on her computer because it wasn’t appearing on myUHN.  I had results for my pelvis and abdominal scans, but nothing has been reported about my lungs.  I was worried because I have been coughing lately and I was told in August that I had a tumour at the bottom of my right lung.  She checked.

Thank heavens PMH actually did the scan which included the lungs.  That was a relief because I would have gone on some kind of Italian rampage if someone messed that up and I had to go do this again. I really don’t need more radiation considering I’m maxed out.  The nurse went through the slides and said, “I’m no technician or anything but I don’t see anything”. Meanwhile, I was peering over looking for white spots on my lung scans too and didn’t see anything either.

Now wouldn’t that be something if the 1.9mm intelligent doubts, stupid confidencetumour they found in August and spots on the fissure line disappeared just like the thing on my pancreas?

Miracles do happen, right?

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That afternoon….I decided to try something new today to alleviate my bronchial asthma problem.  I visited a salt cave.

Several years ago when I experienced this same yearly nagging cough in the fall (rain + leaves = mould), my allergist told me the only way to get rid of it is to go to somewhere hot with a beach and breathe in the salt water air.  Sounds enticing.

Well although I would love to escape right now, it ain’t happening due to the fact that my family dr seems to think I need a blood transfusion and I’m not exactly rich.  Btw, I phoned Germany for some hemoglobin help and it should be on its way.  Plus I stopped taking my German drugs temporarily until my white/red blood counts improve.  There was also some mention about giving me a neupragena (sp?) shot ($3,000-4,000 a pop) on my Sunnybrook blood test results but no one has phoned me about that one yet.  That prescription certainly will give me lots of air mile points for my next trip, as a patient usually needs 3-4 shots to get their counts up. Although I think I would decline that proposed strategy because I’m sure it comes with some interesting side effects which I could do without.  I get to visit my family dr next week.  Can’t wait to discuss the sudden disappearance of “my baby.”

IMG_2211The salt cave was wonderful on my lungs.  I spent the first 1/2 hour coughing up a storm.  I felt rather bad for the gentleman in the cave with me and my older sister.  He certain didn’t get a quiet session because I was coughing up a lung.  Felt really good.  Salt is so healing.  Wish I had know about this before when I suffered with bronchial asthma.  I can’t use a puffer because I’m allergic to ventolin, alupent and its whole medicinal family including it’s cousins.  The cave was a little bit cool so I wore my white alpaca babushka hat which I bought from Germany.  My friend Doug calls me the Snow Queen whenever I where it.  The cold weather lately sure warranted it.

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Wednesday, January 6

Still no lung news.  I phoned the CT Scan place….got a recording, what else.  Maybe if I’m in a bad mood, I’ll nag them and call them every 5 minutes tomorrow.  Fill up their answering machine with 20+ calls.

Today I went to The Art For Cancer Foundation and made the  winter scene above.  It was challenging.  I enjoyed painting it, but my back sure could use a rest.  Time for bed.

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Below are the benefits of going into a salt cave, should you ever decide to go.  The one I went to was in Mississauga.  There is one near York University, in Niagara Falls, and The Windsor Arms Hotel.  I didn’t realize it increases your hemoglobin level too!  Next time you’re sick or have a respiratory ailment you may want to check it out.  Prices range from $17 (Groupon) to $50 for an hour session depending where you go.

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One Minute You’re Pregnant, The Next Minute You’re Not

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So last night I decided to delve back into the results of my blood work from Sunnybrook because some of the tests were time sensitive and needed longer to get the results.  Probably not a good idea.

Really?

Apparently one the tests indicated that I was pregnant.  I thought that was hilarious and decided to go downstairs (with my Ipad/video) to lay the big news to Bobo.  “What are you doing?,”  he asked me covering up my Ipad with his hand.  “Oh, I have some great news!  Are ya ready?  Tell me you are ready.  Remember the blood work I had from Sunnybrook?  Well apparently, I’m pregnant.” 

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Stunned belief is the best I can describe the look he gave me.  “Oh come on,” I told him.  “There is no way.  They messed up again.  What else is new?”  “Do you want me to go to Shoppers and get one of those pregnancy pee tests?” he asked.  “Are you kidding me!  Save yourself the money”, I told him.  “It’s another fuck up.  You should know by now not to trust anything they tell you.”

Me Bad, Never

Oh this is going to be good tomorrow when I go to PMH to get my CT scan and they ask me if there is any chance I could be pregnant.  Yup, here it is on this sheet!

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Did NOT have a good day at PMH.  Went in at 8:00 with Bobo.  The secretary looked at my blood work, took the sheets to the technician, and then told me they would not do the test unless I got clearance from my doctor.

rope:neckWell my doctor wasn’t coming in until Wednesday.  My nurse told me that it must be wrong because I’ve been on ovarian suppression shots all these years.  But the CT Scan secretary wouldn’t hear of it.  Said I had to have PROOF that I wasn’t pregnant.  Was thinking that Bobo’s idea about peeing on a stick was a quick and efficient way of testing it out until she said it had to be Blood Work Proof!  I think I’ve masterminded the art of rolling my eyes by this point. 

Had to go to the Dr On Call to put in a requisition for more blood work.  This is what 1/2 the line looked like while I was there. It was all the way out into the hallway.

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And this is the sign which says how they are improving their services so you don’t have to wait so long in line.  Beautiful.

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When I finally got in, the guy at the lab told me they had to send it across the street to Toronto General because they didn’t do that kind of testing here….2-4 hour wait.  Grrrrr.  And I wasn’t allowed to eat anything either. 

Just after 11:00 my ipad dinged and I had a message from UHN telling me, guess what?  I’m NOT pregnant.  Ohhhh….Big surprise there!  

Took my ipad to the CT secretary who, as soon as she saw me said, “The results aren’t in yet”.   “You wanna make a bet,” I told her, throwing my ipad in her face.  She ran to get my contrast dye drink. 

Train u 2b CrazyNow here’s a helpful hint if you are ever in a situation where you have to have that CT Scan drink that tastes like orange toothpaste.  Tell them you are allergic to it and then they will give you another more expensive one that tastes like weird water.  They both give you diarrhea, but drinking orange chalky toothpaste is not my idea of a good time.  My scan wasn’t until 1:00.  Waiting again. 

They told me to get into a gown.  I told them not on your life, it was freezing in there.  I would take off all the metals on me, including my bra and go in with my track pants/top, but that was the best I could do.  I was not going to get into one of those flimsy gowns today.  Thankfully, he didn’t object.

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When the technician felt my hands to put in the needle he said, “Boy you really are cold”.  Yup.  It was really chilly outside (-16) and inside the hospital too.  The only good thing about this freezing weather is that my cough has improved now that it’s not so damp outside.

Anyhow, got the Ct Scan done.  I got back 3 out of the 4 tests.  The one I really wanted (lung) has not arrived in my inbox.  Sigh.

Here’s what I did learn….

  1. I am not pregnant.
  2. There is nothing new in my abdomen.
  3. There is nothing in my pelvis….maybe an spot on bone L5 but that wasn’t mentioned in my Sunnybrook MRI.

Now I just have to wait for the lung one.  I’m expecting it to say I have pleural effusion because I am still coughing up mucus.  The last time they saw that my oncologist said I would be returning in 3 weeks to get the cancerous fluid drained from my lung.  I told him it was allergies.  I was right…the pleural effusion disappeared.  However, I want to know about the spot(s) they they found on my right lung and fissure line the last time I had a scan.  Hoping they disappeared like the IMPN on my pancreas.  Oh, that would the a miracle I am searching for.  

My family drs office phoned re:  blood transfusion.  Told them I’d phone back later if I was interested and did they know I was pregnant?  And tomorrow I get to get up bright and early to visit my surgeon who put in my metal rods in my back in 2012.  I’m going to bring him a bottle of wine and thank him that I’m not a paraplegic.

Still Alive

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Sometimes I just wished all this would JUST GO AWAY.  

Sigh…..

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U know Ur in Trouble When the Dr Calls!

So early this morning before I even got out of bed, I got a phone call from my family doctor. Oh.., that can’t be good I thought when I heard her voice. It’s not the secretary.

“Ahhh, I got your blood work back and it looks like you need a blood transfusion,” she said. “However, the problem is that every place where you can get this done is closed today and I don’t even think they can do it for you if you went to emergency.”

“It’s my lucky day,” I thought. I’m not going to emerg today. Happy New Years!

“So how low does your hemoglobin have to be when you need a transfusion?”, I asked.

“The low 80’s,” she answered.

“What am I at?, I questioned her.

“78…. I’m surprised you are still walking.” she responded.

“Well I wasn’t walking last week and I turned yellow, but I’m better now.”

“What do you want to do?”, she asked me.

What can I do? I’m going to party? Everything is closed until Monday and that’s when I’m suppose to have a CT Scan. So I’m going to do nothing right now. I don’t really care anyway. I’ll send Germany an email and tell the dr to send me something. This happened to me before.
“Just don’t get cut until then,” she said, “And get into hospital if you start bleeding for any reason”.

“Even a hemorrhoid?”, I asked.

“Even a hemorrhoid”, she answered.
WTF? Now I’m going to be shitting blood too? I don’t think so!  Holy crap!

By the way, did you happen to get the results of my latest MRI?, I asked her.

“No,” she said.

Well, apparently I have extensive metastatic disease throughout my bone marrow again.

She didn’t say much after that. I think my doctors are more worried than I am.

I had a nice burger yesterday hoping to get my hemoglobin up. I’m eating more now, but I now weigh the same amount I did when I was in university. Bobo says I’m getting pretty skinny. My scale says so too.

The conversation in the car went really well on our way to the market.
Who wants to give me some blood?, I asked.

Aughhhhh! No way, cried my brood in the back.
“I will”, said Bobo, my universal O type donor husband.
“Good”, I said. We just need two needles and a tube and we can attach ourselves to one another! True love!

Happy New Year Folks. I need to drink some blood tonight. I’m turning into Dracula’s wife tonight!
Cheers to 2016!

Held Hostage at Sunnybrook Parking Lot

Wednesday, Dec. 30, 2015

I had one hell of a really awful experience today at Sunnybrook Hospital.  I lost it.  Here is my story.

I went to see my radiation doctor today.  I could see he was really concerned about me and told me I was looking a little bit darker and yellower.  I told him that was nothing.  Last week I was really yellow, but I was feeling better now.  He ordered some urgent blood tests and told me he was going to get in touch with my oncologist because there was evidence of metastatic disease in my bone marrow.  I told him that happened the last time I went to Germany and it wasn’t.  He didn’t look convinced and asked me if I wanted to have a chest x-ray done right now because of my coughing and I told him no because it was getting better.  And besides why bother when I was going to have a CT scan next week anyway.   

stressedSo I went and got my urgent blood work done and was anxious to get out of there because I parked my car at the Rip Off Money Sucking Sunnybrook Parking lot because I’ve been having problems walking lately and couldn’t make the trek from a side street.  Bobo was with me and we started putting in the $14.25 fee into the machine.  It ate $5 and wouldn’t acknowledged that I paid.  I pushed the help call button.  No one answered for a while and I started getting ansy.  I pushed the help button about 10 more times until someone answered.  I told the lady the machine ate my $5.  She said she would send someone to help me.  So what happens.  Nobody comes. 

I push the button again.  I told her no one was coming, I had 2 kids at home alone and I wanted to leave.  She said someone was coming.  Well, no one came for over 15 minutes.  I asked a nearby security guard if he could help me.  He said he could not.  I pushed the button again and again and again.  I think by that time the woman was ignoring me so I gave up.  Cancelled my transaction.  The machine gave me $9.25 back.  Still missing my $5.  Took the card and decided to take it up with the parking lot attendant.  Spoke to the valet parking lot attendents.  They told me they couldn’t help me, but to get into my car and drive to the other attendant who should address the situation.  Well, you know what happens when I get to him?  He wouldn’t let me out of the parking lot.

special kind of stupid

By then my nerves were shot.  I told him that the machine ate my money, here was the rest of the money ($9.25) and I wanted to go home.  He said I couldn’t leave until he spoke to his supervisor.  Well he was on the phone for a VERY long time and there were a lot of angry people in cars behind me who also wanted to leave.

Saint....I-Have-My-Limits

Then I lost it.  I told him to give me the phone, I wanted to talk to his supervisor.  At this point I told her that the stupid machine ate my money at the Odette Center and I paid for my parking and if she didn’t get this guy to open the damn gate I was going to ram my car through it.

The parking attendent took back the phone and the driver behind me gets out of his car to find out what the problem was….at which I yelled back that the people here are stupid idiots and the bloody machine ate my money and these people wouldn’t let me out.

So my husband told me to park the car in the lane so no one could get out and we would walk back to the Odette Centre and wait for that special someone to arrive to open up the machine to get my $5 back to prove we paid the $14.25.

So I turned off the car.  But I couldn’t get out of the car because it was too close to the booth.  I thought I was going to loose my mind.

calm punch ppl in face

Then I told the attendant to phone the police.  Call 911, I was being held hostage in Sunnybrook Parking Lot.  I really wished I had my phone at that time because I would have done it.  Then my husband threw another $5 at the attendant to pay for the rest of the $14.25 and then told him that he just stole another $5 from us and he wanted to charge him with theft when the police arrived.

I think that scared him because he opened the gate. 

But I wasn’t going to let that rest.  This had gotten past the point of sanity.  I was LIVID.  I told him I wanted his name and his supervisors name and phone number because I was going to lodge a complaint.   

I phoned her a little while ago.  She agreed that what happened to me was not acceptable and she would phone me tomorrow morning and find out what went wrong.   

I don’t know who owns these stupid parking lots at the hospital, but I, for one, am tired of being gouged $4.75 every half an hour.  It’s not like terminally ill cancer patients have a choice in the matter of where they can park.  We are stuck for hours waiting for doctors appointments and scans while the meter keeps on ticking.  Someone is getting rich on the behalf of ill people.  It is not right.

And why is it okay to keep people hostage in parking lots after they have paid?   If the machines don’t work, hire human beings WITH BRAINS who can THINK when a problem arises or here is an idea…..make PARKING FREE at hospitals.    

Hey, I know.  Get the drug companies to pay for hospital parking.  They are making over $270,000 per patient in 5 years.  Two patients should cover it.

Another Year Without Christmas Shoes

Well, I survived another Christmas. My husband asks me every year if he needs to run out to buy me Christmas slippers yet. Ha ha. He’s got Christmas Slippers part one and two if you want to watch it. Just don’t ever return them.

Unfortunately I have been sick for about 3-4 weeks. The wet, damp mouldy weather we’ve been having is making me cough up a lung as I’m allergic to mould. Today is the first day it’s actually snowed which I’m hoping is going to help. Either that or I’m going to have to go somewhere hot where there is salt water. I’ve got to find a way to dry up my lungs.

I had a blood test over a week ago and got some really bizarre results. (low wbc and rbc, low hemoglobin, low hemocrit, high LD, high B12 and high ferritin. I’ve been getting cramps in my legs and I cant walk up a flight of stairs without being out of breath and having fast heart beats. The nurse at my Drs office told me to go back and redo the blood tests because my blood coagulated and it probably wasn’t accurate. I asked her to put the requisition into the lab and I would go the next day. I went, the requisition wasn’t there. They called up to the office. The secretary said she didn’t know anything about it and the nurse wasn’t coming in until the afternoon. I left. Got a phone call from the nurse later telling me she forgot to put in the requisition but she would do so now. Too late been there twice. Didn’t feel well enough to go back again. So I don’t know what’s going on with my blood work.

On Christmas Eve I had my family coming over at 4:00. I also had to get my two shots in the stomach by CCAC at 2:40. I figured I had plenty of time to pick up the sushi dinner I ordered at Niji’s and the halibut and chips from Fish Joy. But I was wrong. I spent 2 1/2 hours running from one clinic to another one and back to the first one because they lost my file and none of the nurses could give me the shots. I was so desperate I told them I would shoot them into myself… just tell me how to do it. “I can’t do that,” I was told. I was pissed. Spoke to the supervisor on the phone who told me to return to clinic #1 one because that was the only place that had an experienced nurse who could give me the Zoladex (40 degree angle, 16 gauge large metal needle with a hollowed out inside with a pellet). And you know who the experienced nurse was? The same goof I had in clinic #2 I was trying to avoid because he needed two try’s to get it in me in September. Are you kidding me??? I told him, “Please don’t take this the wrong way, but I think that before Princess Margaret Hospital outsources its patients to get these needles, they should train you to do it first. This is ridiculous. I don’t want to be tortured.

My oncologist is going to get an earful when I see him. I never want to deal with this Nursing (?) company ever again. I’m certain that this clinic was the same bunch of idiots who sent a nurse to my house 5 years ago to change my picc line with bloody gloves!

And I now I find out from a friend of mine that they can give you one three month shot of Zoladex. If my oncologist only wants to see me every 3 months, then why can’t his nurse (who knows what she is doing), give it to me? I told him the problems I had been having trying to get this shot. Why didn’t he suggest the 3 month needle instead or something else that the CCAC is equipped to deal with? WTF?

And now to my next problem. Decided I’d better try and get the results of my MRI from Carepath in case I ended up in the hospital. I was feeling pretty rotten. So rotten that I didn’t make it to rehearsal or Christmas Eve service at my church which I have been singing for over 25 years.

The good news is that the tumours I got zapped at T8, T9 are stable (you could have fooled me because I still wake up in pain like someone shot me in the back every morning). There is also evidence of 2 cysts in my neck at C7, C8. But the bigs news of the day is that the technician wrote that there is metastatic cancer throughout my bone marrow OR I have developed something called myleofibrosis….which when I checked on the internet is some sort of blood cancer/leukaemia brought on from too much radiation. In other words, my spinal cord may have been fried and I have some sort of scar tissue which is causing me not to produce enough red and white blood cells.

Now I have been down this road before when I came back from treatment in Germany and I was told I had cancer throughout my bone marrow and I didn’t. I’m not about to have another bone marrow biopsy to prove them wrong again. I will just wait it out.

I’m betting the technician has never seen little piggy stems cells at work and doesn’t know what to call what he is seeing in my bone marrow. My appointment with the radiation guy is at 3:00 on Wednesday. Maybe I’ll get some real answers then.

Bone Marrow Results; Angels 1, Doctor 0

Managed to get a copy of my bone marrow biopsy from my LTD oncology nurse  (still waiting for my oncologist to phone me and give me the news).

So guess what they found in my bone marrow?

NOTHING.  Absolutely Nothing!

(well okay, 1% fibrous tissue); but not EXTENSIVE METASTATIC DISEASE in my skull and vertebrae like my last MRI report stated.

Can’t wait for my next oncology appointment…so what’s in my bone marrow?  What?  What?  Well, we KNOW what it is NOT now don’t we?  It’s NOT CANCER in my bone marrow.  Yes, the MRI indicated that there was something funky going on in my bone marrow…I maintained it was because my hemoglobin was ridiculously low and I’m anemic; but my doctor looked me straight in the eye and said, “We know what it is.  Right?  We know what it is?  “I only ordered the test to humour you.”  Honestly, I think he thought I was delusional for not accepting/believing the MRI report.

Damn it, I knew I should have bet him $50 bucks.

Bite meSo now I have a hole in my backside to prove I was RIGHT.  But boy was it worth it.  You have no idea how GOOD THIS FEELS.  (Maria O’Kane always told me not to listen to the doctors whenever I got bad news.  “What do the doctors know”, she would say.  “They know Shit”).

I can’t WAIT for my next appointment with my oncologist.  I think I will do the “Happy Dance” for him.  Gotta bring my ipod and do a victory dance or something.  Anyone know some good tunes I could play?

And then I will say ….  so I guess my little piggy stem cell transplant is working.

And I guess I didn’t WASTE my money looking for an alternative either as my cancer hasn’t spread since I came back from Germany.  (Oh, and, by the way, I was told by a resident last Fall that had I been one the chemo drug capcitabine/xeloda, the cancer probably would have started spreading again by June…and it’s September and I’ve been good on the German stuff.  No signs of mets.  Hurray!  The whole MRI report  just didn’t make sense to me.  If I had extensive metastatic disease in my bones, wouldn’t the 5-6 tiny tumours in my spine be growing too?  Yet they were stable.

The angels told me I would be fine.  (I really think Michelle Baskie and Maria O’Kane may have had something to do with that).

Angels 1: Doctors 0.

life different perspectiveI’m so happy!  And no, I still really like my oncologist and would not trade him in.  We just interpreted the MRI results differently.  However, I have opted not to go to my radiation doctor’s hospital for MRI’s anymore because they are always between 1:00-4:00 a.m. and this is the second time I had bad news from there (in June, they told me I had a tumour in my neck which turned out to be nothing significant when they rescanned it).  I guess that mistake prepared me somewhat for this one.

Oh, and my hemoglobin is starting to improve because I stopped taking the artesunate for a while to see if it would make a difference and it did  (I temporarily went back on the “foot burning” chemo).  The artesunate has been effective stopping my cancer from spreading, however, it is doing something to my red blood cells.  I’m not too worried about this because my doctor from Germany has sent me something to help me with that.  The German pharmacist told me in broken English.  “I’m not to sure I know how to explain this medicine to you.  Oh, I know.  It will kick ass.”  “Great”, I told her.  “Ship it right over; here’s my VISA number”.   I’ve been tracking my package which was shipped on Monday and it has just arrived in Canada (Wednesday).  However, I’m waiting for customs to approve it.  Last time I had to wait over a month because for some reason it went through Customs twice.  I hope it gets to me faster this time.

I will be writing and showing photos of my trip to Germany in February soon, so stay tuned.

dance in the rain

No News and Ford Fest at the Hospital Today

So I went to PMH to get my 2 shots in the stomach and find out my Bone Marrow Biopsy results.  Got my shots, but not results….they are still pending.

However, my doctor said,” Well, you know what the results are going to be, don’t you?”  (insinuating “Extensive Metastatic Disease” in the bone marrow like the MRI said).

But truthfully, do I know that?  No.  No I don’t.  That’s why I asked for the Bone Marrow Biopsy.  He just ordered it to humour me.  And yes, my ass is still killing from it.  But I really don’t care because I need to know what is going on in there so I can make a rational decision about what treatment I am going to pursue.

Maybe all the hype is about the little piggy stem cell transplant I had in Germany.  I don’t think my oncologist is rather receptive to that.  I don’t know what his religion is, but I don’t think he eats pigs.  Nor do I think he would allow anyone to stub him with a stem cell from a pig either.  I asked him if it was possible for my bone marrow to get all crazy because of the artesunate drug I was on (which I emailed a pharmacy in Germany and they told me that yes, it does cause anemia).  He said that was “possible”, but he’s pretty convinced it’s breast cancer in the bone marrow.  However, I have all my blood test results and my hemoglobin went wacky ever since I went from 50mg of Artesunat to 200mg in July.  My tumours have not got any bigger; my CT Scan showed nothing in my organs.  Something does not make sense.  If the disease was taking over, do you not think the existing tumours would be having a field day and be growing exponentially?

Damn I hope I’m right.  Don’t think I could convince him even with the story I had about the two angels who visited me the other night and told me I’d be fine either, so I never bothering telling him that.

I have to go back to PMH on Friday and do another blood test to see what my hemoglobin is doing.  I’m at 84 right now and if I get in the 70’s, I’m going to need a blood transfusion…but don’t worry, only 1 out of 250,000 may get HIV or Hepatitis from it.  My husband looked at me and laughed and said, “It’ll be you.  It’ll be you”.  (Kind of like the time the doctors told me the chances of having heart failure because of the chemo was .004 per cent and that was me…and because my former oncologist didn’t believe it, I was sent to no less than 3 cardiologists who all verified the chemo killed my heart, including one of his friends).  Offered to bring in one of my sisters to get their blood, but he said he doesn’t know if they do that and if their blood would even match.  I stopped taking the artesunat and started on chemo (Xeloda) once again.  Awaiting the burning feet/peeling syndrome in 2 more days.

Guess what awaited me today when I got to the hospital?   The paparazzi, that’s who.  They are stationed all over the road behind the hospitals (PMH/Mount Sinai) to get the latest scoop on Rob Ford.  I bet you he doesn’t have to wait 2 weeks to find out his test results for MRI’S.  In fact, they must of told him right on the spot this morning because he dropped out of the mayoral race and his brother is now wanting to take the helm.  Well, if he does have colorectal cancer, they will probably be removing the tumour first and then he will most likely have chemo and perhaps radiation depending on how bad it is.  Hopefully, I won’t be joining him any time soon hooked up to a chemo chair.  Atlas, I believe he will opt for chemo at Mount Sinai because it is a lot less crowded and he would have more privacy.

My friend, who has colon cancer and I were discussing the situation and have come to the conclusion that something doesn’t make sense.  Testing for colon cancer is usually done first by an x-ray/ultrasound and then to zero in there, they use a CT Scan.  Why would he be needing an MRI today (said the media) which is usually used for bones?  Unless, it has already spread to his bones or  he is getting a Cardiac MRI, in which case he jumped the queue which I have been on since April!  Very fishy.

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