I Never Learn….Irish Maria

May 21, 2011

Subject: I never learn

(an email sent from my Irish friend Maria)

This is so very funny, I had to include it with my blogs.

Here is one for you.  Real life no joke!  I am on the subway just a few days ago and this bald lady in a white cap with head bent rocking back and forth is sitting opposite me, so I put 2 and 2 together and get 7.  In my head I know what no one else understands she is a cancer patient, feeling nauseous and on her way to treatment probably.  She is with another slim Asian lady, her chemotherapy buddy, I suppose.   So, me being me, I stick my big beak in and I say “Excuse me, I am a recovering cancer patient too my dear.  It will get easier.  I had my last treatment two years ago and people don’t believe me when I say I am in recovery.”

To which she replies, very angrily, with almost a screech ” NOT cancer patient, no sick, I follow BUDDA this why I shave head, no need cancer treatment if believe in BUDDA.  Budda crush cancer LIKE PEANUT”, like sooooooohhhhhhhh as she brandishes her fist at me.  Holy shit the ground could have opened up and swallowed me.  I said “Very sorry, I should mind my own business, glad you are not sick”.  I could feel her eyes on my back as I walked away.   I kept thinking for a religious woman, you sure are f*****g angry!  Teach me to reach out and help anytime soon, I’d rather pick every one of my nose hairs out with a tweezers.

God has a bad sense of humour….. loves to humiliate me!

I’m off to bed just thought I’d share that!~  Irish Maria

Too Many Needles

Tuesday, May 16, 2011

Went to my family doctor today.  I told her my story, including how I was sensitive to sound and walking backwards.  I also told her I was firing my cardiologist.  She said fine and who did I want to go to.  I gave her the name of someone at the Heart Attack hospital and told her I wanted to get off the heart drug Carvedilol a.s.a.p.  She didn’t think that was a good idea just yet.  Said it would probably take me at least 3 months for my heart to get better.  And after that, I should probably think about getting a hysterectomy because I will need to stay off the Tamoxifen. Lucky me.

I asked her if they will take a biopsy of whatever the heck is on my neck tonight.  She told me that they don’t do that if it is less than 1 cm long.  My cousin had a problem with her thyroid for 9 years and was taking medication for it.  She finally decided to go to another doctor.  He ordered the biopsy even though her growth was .9 mm long.  It was cancerous and they took the whole thing out.  My doctor said to ask my oncologist about it when I find out how long it is, because he may have some clout.

My other cousin, Sarah, had breast cancer and then she got thyroid cancer too.  I’m not liking the odds, right now because of my family history of thyroid problems.  I also discovered that thyroids can make your heart go bananas.

That could also explain why I am always tired.

Wednesday, May 17, 2011

My family doctor wants me to go get some more blood work done today, but I’m not in the mood.  My arm is still sore from all the other pokes from last two weeks.  I have around 7 holes in my hand and many, many more on my arm.  I look like a drug user.  And the fact that one of the nurses put a see-through tegaderm bandage in the inside of my elbow didn’t help because I broke out in a rash.  (Kind of like what happened with the rash on my pic. line during chemo).

No one has been able to draw blood from my right arm in the first shot.  Then they try warming up my arm with a blanket.  That usually produces good results.  But yesterday, my favourite blood lab technician tried twice, and my veins kept collapsing.  She said she wasn’t going to try again.  I didn’t want her to either.  It’s too bad I can’t get any blood taken from my left arm, because of my mastectomy.  My right arm is taking a beating.

I phoned my doctor and she said, “Go tomorrow”.  I decided not go today.  Instead I went out for Dim Sum with my friend Julia and I also got my hair done (so that if one of my doctors or nurses kills me in the hospital, at least I will look good).

My Sister, MD

I happy to report that I think my older sister has successfully figured out what is wrong with me.  She researched “hypersensitivity to sound” and discovered that it occurs in people who have a deficiency in the mineral Magnesium.  I started taking magnesium tablets since Thursday and it has made a world of difference.  Today, I can actually listen to music in the car without bobbing.  I’m still sensitive to sound, but it is not nearly as bad as it was last week.

Her diagnosis actually made sense.  I was in Emergency that one Sunday with the stroke and at my local hospital, the Monday.  They don’t feed you when you are in emergency because they expect you to leave.  I did get an egg sandwich at around 8:30 that night  The next morning, they gave me a horrible little bran muffin that tasted like sh**.  Luckily there was a Tim Hortons in the hospital and I went and had a decaf. coffee and a bagel.  Damn good thing I could walk there, unlike those other poor old patients who were bedridden.  They had to eat the shitty muffin.  All I can say is, don’t ever get sick, because if you end up in the hospital with no one to feed you real food, you might as well be dead.

Let me now tell you about my son.  Frack tried his,  “Oh yeah.  I am going to do this if you don’t do as I say” .  This time I said, “Oh Yeah!  Try it”.  He started banging two objects together and my head didn’t move.  You should have seen the look of pure shock on his little face.

DEFEATED at last!  The little sh**.  Serves him right.



My Tormenters

Frack and Bobo are taking advantage of my condition.

If Frack wants me to do something and I say, “No”,  or don’t do what he asked me to do fast enough, he says, “Oh yeah, Oh yeah!  Do you want me to do this” (and he will then proceed to bang objects around to watch me bobble).  All this attitude from a 5 year old. Go figure.

And my husband.  He’s even worse.

He was making dinner on Saturday night and decided to yell “Bam”  “Bam”  “Bam” every time he put a vegetable into a pot like Emeril on T.V. just to watch me jump.  And when I complained, he started singing, “Ding, ding, ding, ding, ding, ding, really fast like and train.  My head dutifully bobbed quickly from side to side.

“Quit it”, I yelled, which only made everyone laugh even more.

This sucks.



My Adventure At The Pickle Barrel

Yesterday I went back to the Heart Attack Hospital, hoping to speak to the Neurologist, but he wasn’t in.  I’m happy to report that I made it out of the parking lot this time without having a flapping “seizure”.  I gave the TEE and MRI results to a secretary there and she said he wouldn’t get it until Monday.

I decided to go visit my eye doctor.  Before and after chemotherapy, I went and got a picture of the back of my eyeballs.  I thought I’d better return and get him to check my eyes again to see if anything has changed.  He took me in right away.  I was having difficulty in the waiting room because it was so noisy, my head was bobbing uncontrollably.  My older sister was trying to tell this kid to stop banging something together, but I told her not to worry about it.  I tried plugging my ears.  Fortunately, I didn’t have to wait long.

My optimologist started testing my eyes.  He said that as far as he could see there were no problems in the optic section of my brain.  He put some drops in my eyes and took me to another room but I started to react to all the sounds.  He had to hold me because I lost my balance again.  An ambulance went by, some computer made some noise, and the phone rang.  My head zig zagged.  My eye doctor was in awe.  “That’s incredible,” he said.  I’ve never seen anything like that before.  At least he never said I was nuts.  He was kind enough to charge my visit to OHIP so I wouldn’t have to go to the lobby to pay for the visit.  He’s a saint, let me tell you.  I love my eye doctor.

I then convinced my sister to drive me to the nearby Pickle Barrel so I could buy Frack some coleslaw and potatoe salad.  I was doing really well until5 I finished paying for my food items.  The phone rang.  This was no ordinary telephone ring.  It was deafening.  My arms involuntary shot to the sky, my head shook, and I lost my balance.  As I was plummeting backwards, my sister had the where with all to catch me before I fell and then the phone rang again. I had another “attack”.  My sister started screaming,  “Pick up the phone!  pick up the phone!”  The poor woman was in shock.  She picked up the phone and couldn’t say a word because she was wondering what the hell just happened to me.  My sister quickly ushered me out of the restaurant and to the car where I sat until she went back to pick up my purchases.  I don’t know how she explained that scene to the poor woman behind the cash.  She basically told the cashier that I was sensitive to sounds and the phone did that to me.  “What’s wrong with her?,” she asked.  “The doctors don’t know”, she answered.  “That was incredible”, said the man next in line.  There were 3 teenagers sitting on a seat playing on their cellphones/Ipods.  They stopped what they were doing when my sister and I walked hesitantly past them.  Their mouths were gapping open.  I think I am going to become an agoraphobic (people who are afraid to leave the house).

The Verdict

Well, guess what folks, the verdict is in.


I could have told them that, but why ask the crazy person?

Why don’t doctors listen to their patients?

Yesterday, I had an ultrasound done on the my veins in my legs.  Nothing showed up.

This morning, I had an appointment with my oncologist.  I took out my Ipod, played some music, and said, “Take a look at this”.  My head started to bobble back and forth to the music “Great Balls of Fire”.  He looked at me in astonishment and said, “I don’t know what that is.  I’ve never seen it before.  I’ve never read about it before”.  “Great”, I thought…”Stumped him too”.  Now what was I suppose to do?  At this point I really started to get to worried.  I was afraid I’d never be able to leave my house again because I could not control the outside world of noises.  I couldn’t even stand the sound of my telephone ringing.

Then I went to have a T.E.E. done (camera down my throat).

Just before my cardiologist started the test, she told me to keep still.  I told her that that might be a problem if that phone sitting on the table rung. I might move move then.  The cardiologist said, “There is nothing written in books to explain that….You know, you may have only had a migraine, not a stroke”.  I would have loved to tell her to PISS OFF at that point and that I know the difference between a migraine and a stroke but she had already frozen my throat.

And guess what I heard before I went into la la land,  “Holy S***, did you see that?”  “Did you see that?” “Guess they finally found something,” I thought before I slumped off to sleep.

There were bubbles coming out of a hole in my heart which I never knew about.  That means they found the source of my “stroke”…that’s where the blood clots were originating.   So whose the psycho now?  The cancer drug I’m on, Tamoxifen, can thicken your blood and cause clots.  What boggles my mind is that my blood showed that I had an high INR level.  Apparently that means my blood is too thick.  “Who took you off the Warfarin?”, my cardiologist asked me.  “Your hospital did,” I answered.  “Who?” she bellowed.  I didn’t really want to get him in trouble so I didn’t say anything.  Then she yelled really loud at me, “Who took you off the Warfarin?”  I spilled my guts. “Dr. ——,”  I cried.   I’m sorry but the woman is scary when she gets mad.   “I’m going to kill him,” she answered.  “Poor guy”, I thought.  I rather liked him.  He got me my MRI.

Tomorrow, I am going back to The Heart Attack Hospital to give them a copy of my MRI and TEE to find out if I am going back on the drug Warfarin before I have another stroke.

My Dancing Bobble Head

So today I went to the Heart Attack Hospital with my younger sister.  My older sister was with me all last week and she had to go to work today. 

We got out of the car and started walking to the entrance.  I think I was walking too fast because I felt really dizzy when we got near the bottom of the ramp at the valet parking.  Then I had one of my flapping wing seizures.  Cars started to come down the ramp and were going around me.  Then a car backed up.  Someone was directing them so I wouldn’t get hit.  They stopped the gate from letting any more cars in once they realized I was down there on the ground.  My sister asked one of the parking lot attendants to get a wheelchair.  He said someone told him to call 911.  “Forget it,” I told her, “I’m not paying $45.00 bucks for an ambulance when I’m 50 feet from the entrance to the hospital”.  “Get a wheelchair”, my sister yelled.  He got me one and carted me to A wing, 4th floor to see the neurologist.  However, the Dr., and his secretary weren’t there, so they sent me to emergency.  

I went to triage, again, got sent to the Orange wing, and I had to tell the whole story to a resident.  He did a series of tests.  But then I noticed a new symptom.  Whenever a noise erupted (ie:  the call button for a nurse, telephone or the P.A. system), I would start to twitch differently, depending on the sound.  Now how freaky is that?  So the resident kicked the garbage can and I went flying.  Then he got a tuning fork and started to strum it.  I didn’t have much of a reaction with it.  The resident put all the info. together and said he had to consult with a man I will call “Dr. House” and his crew of trainees. 

Finally, the verdict.  Dr. House told me that there was something at the back of my brain (cavernous hemangioma), but it’s benign.  There was no cancer tumour or anything apparent.   None of the tests showed anything conclusive.  So now that they don’t know what is wrong with me, they told me to go see a shrink….because it wasn’t a “Hardware Problem”, it was a “Software Problem”.  

Later, the kind resident came up to me and said that he has been doing neurological work for over 1 and a half years.  He said that what I am describing happens to 1 out of 5 patients he sees.  The good thing is that it’s not a tumor.  And hopefully it should go away in a couple of weeks.

So I went home feeling mystified.  Don’t get me wrong, I’m glad I don’t have a tumor in my brain, but I don’t think the doctors know everything.  I have had some very strange reactions to medicine in the past.  They took me off Tamoxifen on Sunday and on Friday, they put me on Warfarin for one day.  Bobo seems to think my balancing act started then and it was the drugs that caused this.  I tend to agree.  Warfarin is something they use to kill rodents.  Tamoxifen is a derivative of Thalidomide (the stuff they used on women in the 60’s for nausea during pregnancy that caused them to have babies flippers for legs/arms).  And Carvedilol (for my heart) has made me collapse in the past.  

So now I have a new trick today.   Different sounds/beats make my head bobble back and forth…especially to music.  The resident doctor was killing himself laughing when he saw me bob my head back and forth at the hospital when certain noises occurred.  He said, “I’m so sorry I’m laughing, but this reminds me of those flowers that danced to music in the 70’s… the ones that bobble.  “Yup,” I answered.  “It is pretty funny”.  My kids saw me doing this at the dinner table yesterday and were laughing at me too.

My husband convinced me to put on some music from YouTube just now. My reaction is pretty unbelievable.  My head is like one of those metronome (I think that is how you spell it).  That thing that ticks back and forth to the beat when you are playing the piano.  I rock back and forth gently when classical music is being played, but once it picks up, boy does my head started bouncing around.  It’s really freaky, but it’s pretty funny.  I told my husband to video tape it, but I think my battery is dead.  

I wonder what will happen tomorrow.

Life is always an adventure ‘round here.

Head Twitching

Sunday, May 8- email from my cousin who I will name Boo Boo 

Boo Boo  ( how are you now?     i am at work    did you go to church?)

I wanted to (go to church), but I didn’t.  I lay down for a bit before dinner and when I got up, I started flapping again.  My older sister put on the radio and my head started moving back and forth to the beat of the music.  She told me to stop it.  She thought I was doing it on purpose and she didn’t think it was a good idea.  I had no control of my head bopping from side to side.  The faster the music, the more my head swayed.

Frick and Frack were laughing their heads off.  “Why are you doing that mom?”, they asked me.

Do you think I CAN HELP IT?  I asked them.

Are you Autistic mom?

What does that mean anyway? asks Frick.

Lovely dinner twitching, let me tell you.

I had difficulty getting my chicken burger in my mouth.

But at least I was entertaining everyone at the table.

I find I am worse after I lay down.  I guess there is pressure on the back of my head when I do that.  Now that I have been on the computer for a while, I seem to be okay.  But how I am suppose to go to sleep?  Upright?  This is too weird.

Boo Boo:  (sleep in the rocking chair, answers my cousin).

Maybe I should call another ambulance so I can sleep on one of those reclining stretchers.

You have got to come back here.  The paramedics are gorgeous.  We’ll keep calling them until we find one that you like.  And boy, oh boy wait until you get to the ambulance bay area.  If your lucky, there are about 5 or 6 busses there (translates to 10-12 hunks).  Even my husband said that the pre-requisite for being a paramedic/ambulance driver is to be good-looking.

Boo Boo (am on the next flight out…)

That’s great!  I’d come gettcha, but I’m banned from driving!

Boo Boo (Just come via the Heart Attack Central Hospital with an ambulance)

What a great idea.  I’m getting tired.  Gotta go to bed.  I hope my dad is coming to take the kids to school tomorrow.

Flapping Arms

Woke up with a dull headache.  Went to eat and had what I would classify as a seizure.  My arms were flapping in a zig-zag pattern and my body started to shake.  I lay down on the couch and called Tele-Health, who told me to get to emergency again ‘cause my TIA condition was getting worse.  Bobo didn’t want to drive me there again.  “What’s the sense”, he said, “They are just going to send you home after waiting hours on a stretcher”.  He didn’t want to go all the way to The Heart Attack Central Station, so we went to my local hospital.  That was a mistake. 

Just as we are walking in the lobby, some kid started shrieking which for some reason, set off another “seizure” or flapping arms syndrome.  My husband asked the woman at triage if she had a wheelchair.  “No, go sit on a red chair,” she answered.  “Well, my wife is having a problem walking and sitting on your chair”, he told her.  He came back to me and asked me if I wanted to go to “Heart Attack Central Station”.  “How the h*** am I going to get to the car?” I asked him.  Can you lift me up?  He asked the lady in Triage, if he should take me to the Heart Hospital.  She said, “I don’t care.  Do whatever you like”.  So when the triage nurse finally came outside to get her next patient, she asked the 12 people there, “Who’s next?”  They all pointed to me.  She looked at me and said, “Get into the chair in the Triage room”.  I looked at her, flapping away, and said, “And HOW am I going to do that?”  My flapping stopped for a while and I managed to get into a wheelchair (which someone miraculously found) and she took me into the room.  “Get into that chair”, she instructed.  Then I had another attack.  My arms were swinging all over the place and I was falling out of the chair.  I heard someone say, “She’s having a seizure”.  “No, she’s not”, she answered, “SIT IN THAT CHAIR”.  “Stupid b****”, I thought.  My husband picked me up and plopped me on the chair.  I think she asked me some questions and I said absolutely nothing. My head was banging into the window behind me. Lucky for me, the emergency doctor who remembered me from Sunday/Monday, saw me,  and next thing I knew I was in the waiting room, waiting to be seen.  I didn’t wait long because they called my number pretty quickly.  They were on number 89 and I was number 7.  I skipped the queue. 

It was the nice doctor.  “What are you doing here again?” he asked.  I told him I was walking backwards crashing into coffee carts yesterday, and today I was flapping around like a bird.  “It”s good that you came in today,” he told me.  “Now we can start piecing some of the puzzle together.”  “What did they tell you at Heart Attack Central Station yesterday?” “They said to phone the neurosurgeon on Monday and get an MRI ASAP.  So he disappeared for a while.  I could hear him talking to someone on the phone.  “Call the radiologist, tell her we have someone in emergency who needs an MRI.  Who’s on call?  Too bad if she doesn’t want to come in, if she is on call she has to come in.  1:30.  Good.”  He came in and told me that I would be getting an MRI at 1:30 (40 minutes away).  Finally.  Maybe some light would be shed on what I was experiencing.

Good old Cathy came and helped calm me down after the MRI.

“We did an MRI”, the doctor said, “And the back of your head lit up like a Christmas Tree”.  “Here is a copy of your MRI.  Phone the neurosurgeon at Heart Attack Central Station first thing on Monday morning and get an appointment to see him”.  

One of the papers he gave me said I have a probable cavernous hemangioma.  Not sure what that diagnosis really means but I hope they are not going to have to drill into my head to get something out.

That’s all folks.  Hope your week was better than mine.


The Coffee Cart

I ended up in the hospital again Friday.  I was at “Heart Central Station” for my Stroke Prevention Clinic assessment from 9:00 – 12:00.  They sent me downstairs for blood work. They must have taken about 20 vials of blood.  I didn’t feel so hot, so they kept me a little while in the lab.  When I felt I could get up the lady helped me to the door.  I figured I had better go get something to eat.  I started walking in the lobby and felt weak.  So I grabbed the sandwich bar cart to steady myself.  The woman behind the counter came up to me and asked me if I needed some help.  I told her I was very dizzy and I was using her counter to stand up, so she assisted me to a nearby seat.  I asked her if  I could buy a sandwich and she brought one to me.  It was disgusting.  

Then I thought I should go to the food court upstairs to find some better food.  I stood up, whirled around, and the next thing I know I was walking backwards uncontrollably.  My brain kept screaming, “Stop, Stop,” but I couldn’t stop running backwards until I smashed into a coffee cart.  I tried to regain my balance by hanging onto the cart, but the damn thing was on wheels and we both went flying.  I fell to the ground. Everything went fuzzy white in the lobby for a while.  

The next thing I know all these people were around me asking me if I was all right.  I decided I had better tell them my medical history real quick, just in case I blacked out.  Told some woman I had a stroke Sunday (TIA).  I think she was forwarding the information to someone else because the next thing I know I heard CODE BLUE in the lobby.  “Sh**”, I thought.  I don’t think I’m having another stroke, I’m not paralyzed.  Then my right arm started flapping.  Now I had a crowd of people around me and someone was yelling “Stand back everyone, stand back”.  So the woman who told someone I was having stroke said to me, “What’s wrong with your arm.  Can’t you control it?”   “NO”, I told her.  SHE’S HAVING A SEIZURE!, she yells to someone.  CODE RED, CODE  RED in the lobby, I heard the P.A. system blare.  “Great”, I thought. Then someone else put a blanket beneath my head and that lady grabbed my flapping arm and tried to restrain it.  I wasn’t too happy about that because I needed to flap and she was hurting me.  Then a doctor came.  Basically I was in the right place to come crashing to the ground because I had a whole bunch of doctors, nurses and volunteers ready to assist me.  That must have been quite a scene – watching me run backwards crashing into a coffee cart.   I had lots of spectators, especially with the CODE BLUE “in the lobby” announcement.  Who’s dying?

So about 7 people lifted me into a stretcher and carted me off to emergency for the 3rd time this week.  I saw a crash cart was brought to the lobby.  Glad they didn’t have to paddle me!  

They took me to triage.  The guy recognized me from one of my previous visits.  I handed over my new Hospital card and phoned one of my friends, who lives about 2 minutes away. Then a security guard asked me who I was.  I had to explain what happened to about 3 times to different people, but the best one was when I was talking to a blond doctor.  She said, “So what happened to you”.  “Well”, I explained, I gave blood (about 20 vials), went to the lobby, and next thing I know I was walking backwards and smashed into a coffee cart.  “Are you pregnant?’, she asked.  “No”, I answered.  She seemed somewhat confused, so I said, Okay, this is the short version. Cancer, mastectomy, chemo, heart failure, stroke.  “Are you having a baby?”, she asked me again.  “Are you kidding?” I answered.  I’ve already got two and I really don’t need any more.”  “Are you in labour?”, she asked. “No”, I answered, “Why?”  She said that she was an OB. and someone had paged her to come to emergency to deliver a baby.  I laughed and said, “No baby here, but thanks for the good laugh”.  Code Blue, Code Red and now an OB doctor.  I sure had them hopping today!

My friend came real quick.  Quicker than my husband on Sunday. Thank God she lives so close.  She calmed me down. 

So I was in emerg. from about 1:00 to 11:00 at night.  I could not stand up by myself.  At one point my right eye started to droop and I felt weird.  My head started to twitch sideways and my arm flapped again.  “That”, said the resident,”Warrants you another CT Scan”.  “Great, more radiation,” I thought.  They found nothing.  All my blood work came back normal (they were checking to see if I was anemic or had low blood sugar). So in the end, they said they didn’t know what was happening to me, but I was to call the Stroke Prevention guy I was talking to earlier that morning to get an MRI done ASAP.  They put me on Warfarin (a blood thinner) which I will have to probably take for about 6 months.    It has a whole bunch of interesting side effects (like internal bleeding) which I’m not too happy about and a long list of foods I am not allowed to eat. Like the food that I’m suppose to be eating to keep my cancer away like broccoli, cauliflower, kale, etc.  It’s okay though, ’cause I didn’t like them very much to begin with.

This week (Thursday), I’m having my a T.E.E.  Basically, they are going to shove a camera down my throat to take pictures of my heart.    Apparently, that’s the last test they are going to do in a quest to find out why I had a T.I.A.   None of the others tests showed anything significant.

So now I am not allowed to drive or do housework.  The housework, I won’t miss, but the driving really puts a damper on things.  I’m afraid to go out, lest something else happens to me. So basically I’m housebound.  I think I am going to start blogging again or I’m going to go nuts. I like checking my emails because for some reason it makes me feel better when people write to me about my pathetic life.