Ever Wonder What Happens When You Hit a Telephone Pole? (And No, It Wasn’t Me!)

IMG_0089IMG_0087I went to church to sing at our Good Friday mass.  Bobo said that about 10 minutes after I left, a car smashed a telephone pole into two pieces near our house.  Must have been going pretty fast for that to happen.  I live near an intersection where there are frequent accidents.  People often drive through the red lights.  I imagine that’s what happened once again.

Just look at the view of the top of the pole just hanging there.  Never seen anything like that before.

 

I got a call for another appointment (spinal MRI) in May.  I decided not to go to that one either. Phoned the hospital and told them I was not about to come in at 4:00 a.m. in the morning and I wanted the complaints department.  She asked me why.  I told her that my last MRI three weeks ago was at 10:30 at night, there were 3 trauma patients admitted and I didn’t get home until 3:00.  I had insomnia after that and it took me several days to recuperate.  She told me that they are a trauma hospital and one of the machines was broken.  “So what,” I told her, “This happens to me every time I go there, not just the last time I was there.”  And why don’t they phone people when they are 3 hours behind?  I told her that I didn’t think it was fair to send palliative cancer patients who have had surgeries, numerous rounds of chemotherapy and radiation treatments to get scans done in the middle of the night.  I thought that was cruel.  The Odette Centre was suppose to be a Cancer Centre and why didn’t they have their own MRI machine?  I am sure there wasn’t a shortage of cancer patients lined up to have scans done on a daily basis.  A twenty minute scan shouldn’t take over 4 hours to complete.

funny-squirrel-hammer-Thor-costume“Here’s a thought”, I told her….”People who are dying don’t want to wait around in waiting rooms for scans all night.  It’s bad enough they have to wait hours on end for doctor’s visits.  And besides all this,  I don’t like the fact that I have to by-pass the hobos in the front lobby at night when I come in.   I’ve never seen any security there at night and I’m by myself because my husband has to stay home with the things we have at home called our kids.”

1318093697656_5040986She said that the next “Day Time” appointment was 4 weeks later.  “Oh, that’s too bad,” I told her.  “That might screw up my doctor’s clinical trials because I’m one of his patients.”  She told me she would phone me right back with the number of the complaints department.

funny-kids-child-color-blackI think some of Maria O’Kane’s audacity is rubbing off on me.  There comes a point in your life when you just don’t want to take anymore crap and you begin to push back.  I’m beginning to do that now.   Maria always told me that you have to be your own advocate, the doctors know nothing, and so what if you were late for an appointment or didn’t feel up to it.  Don’t go.


Ten minutes later I got a call….”Oh, you can come in for your scan at 10:30 in the morning, but it’s on Victoria Day.”  “I’ll be there”, I told her happily.  I also got their “Patient’s Experience” email address so I can write them a lovely little note to express my true feelings.  I can’t wait. And I will write to them because I really don’t think it’s right to do this to cancer patients.  I’m sure there are others that feels this way but are too sick to complain about it.  It’s just not fair.

Sorry!  This was suppose to be a short blog.  So much for that!

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In the meantime, I hope you have a safe and Happy Easter.

 

 

And may the Easter Bunny be good to you all!

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Day 1 Germany…entitled: How Could I Be So Stupid?

Excerpts from my diary on my trip to Germany (Jan. 31-Feb. 1, 2014)

Just wanted to let you know that I made it to Germany. The flight was great! Loved “Lufthansa Airlines” because they had fabulous choices of movies, music and other entertainment, and their blankets and drinks were FREE! The Air Canada flight we didn’t opt for that was suppose to leave an hour before us was delayed so we definitely made the right booking choice.

My feet got sooooo hot in my boots while in flight that I had to take them off because they were sweating like crazy (chemo side effect). Elected to take the “Wheel Chair Assistance” when I got off the plane. It was great! Must do that again. Got to go on one of those electric golf carts and I even got a special elevator ride/private bus after departing from the aircraft. It took us right to the baggage stop. Lovely escort service too!

IMG_0546Found the train station easily enough; it was across the street….bought our tickets and then did not get off the train at the right time. That’s right folks…had our own extra special tour of Germany. Went towards somewhere that started with an N which my husband said got leveled during the war. We would have failed as competitors for the Amazing Race…but it would have been great drama if we had this all on film as it unfolded.

Our conversation went kind of like this:

Me: We got to get off here

Bobo: No we don’t. The guy said we just have to get off at the other station (which we did)…one changeover not two.

Me: Now I don’t speak German or anything, but I’m pretty sure this ticket says to get off here.

Bobo: I don’t think so.

Me: We’re running out of time..this train will only stay here for a short time.

Bobo: I don’t think we have to get off

Me: I’ll stay with the luggage and you go ask someone. That was my first mistake. Never ask a guy to ask for directions. I know that. I should know that…but I wanted to see if he would do it. There are all kinds of people all around us whom he could have asked before the doors closed, but no…he has to run around the train to “Find the conductor”. Case closed. Did we make it out of there where I thought we had to get off? Absolutely not! We remained on the train.

Eventually the train conductor shows up and asks us for our tickets. Then he scowled at us for being stupid because, guess what? We did not get off the train when we were suppose to. In fact, we got the same scowl/hahhh sound from the other three train personnel we had asked for directions at the change over to return to the station we were suppose to get off at). It’s a very interesting scowl that sounds like they are going to spit on you. Hahhh!!, with the head shaking back and forth. No joke. It’s pretty scary. I felt like a kid being scolded. Three times, no less.

We got off and had to wait about half an hour for the next train to Baden-Baden. I decided to go to a cafe and get a tea because I was cold. When I reached into my purse to pay for my drink …I was horrified to discover that I DIDN’T HAVE ANY MONEY. OMG don’t tell me I forgot all my money and my bank cheque to pay for my treatment at home. Oh yes I did.

All I can say is thank heavens my older sister gave me some euros before I left ’cause that’s how I paid for my tea and my taxi to the Holiday Inn from the train station.

This whole scenario lead me to think of the time a couple of years ago when I got an email from a colleague at work named Dave who claimed he was in Spain and had no money and to wire him some. I didn’t fall for it. I laughed and thought, “How can someone be so stupid to go to a foreign country and not have Any Money with them?….well, that would be me.

I swear my chemo treatments have gone to my head and have killed way more brain cells than I could have imagined possible. But looking on the bright side, I did manage to call my credit card companies in advance to tell them I would be in Germany…so all I can say right now is that those cards had better work or I’m going to be out in the street begging for money soon.

IMG_0609I will send you a very special picture I took today which pretty much sums up my predicament… By the way, I bought a cell phone with my credit card so I could call my sister to wire me some more money. I haven’t quite figured out how we are going to do this, but I am hopeful.

I am sure that I will laugh about this one day. I just would feel a whole lot better if I remembered the money/cheque…. I also forgot to bring my hair brush…but that is easily replaceable when you have money!  Please note…you probably won’t get any more messages from me hereafter because I won’t have wi-fi in the apartments where I’m staying starting tomorrow night. Sorry for the cliff hanger. I should call this post “Broke in Germany.”

 

Why I’m Not Doing Chemotherapy

 

Not my hands/feet, but you get the idea

Not my hands/feet, but you get the idea

I have an appointment with my family doctor today.  This ought to be interesting.  When she asks me if I’m on chemo, I will just say, “Why?”  I’ve been stable on the German medicine for 8 months and my feet don’t burn.  Why fix something that isn’t broken. It’s actually nice not shedding skin from my feet like a snake on a weekly basis (which was happening while I was on the Xeloda/Capecitabine).


Things Go WrongIf she tries to convince me to go back on conventional treatment, I will say….”Let’s see…my heart stopped dead when you gave me Taxol (during intravenous chemo…which my oncologist was thinking on putting me back on once the Xeloda didn’t work).  I had heart failure because of the epirubicin,  I had a stroke/TIA because of the tamoxifen.  The approved FDA drugs I have been given from here are too toxic and are affecting my heart.  Besides, I’ve already been told the chemo drug Xeloda is only temporary and would probably only be effective until June.  Will chemo go after my mutant DNA?  No.  But the little piggy stem cell transplant might correct it.”

Besides, since I’ve been on the German medicine, my heart function has improved dramatically.  Yes, my red blood cells/hemoglobin have been low because of the artesunat, but I just got a new shipment of really terrible tasting stuff to improve that.  I’m feeling much better.  My energy level is improving daily and my test results show no evidence of my cancer spreading.  So guess what?  I’m sticking to the thing that is working right now which causes the least amount of side effects and if and when that stops working, I may decide to go back on chemo or I may not.  (There are other cancer alternative therapy options in Cuba and the USA).

Hmmm….wonder what she going to say about that.

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My friend Cathy knows a person who had brain cancer and was told she had 3 months to live.  She met a person with the same type of brain cancer who beat the odds and is still alive 5 years later.  She asked him what he did and he told her about this clinic in Germany.  She never told the doctors here what she did because she was afraid they would dump her as a patient and not allow her to participate in clinical trials.  Three, six, nine, twelve months went by and she was stable.  The doctors here were amazed that she was still alive because everyone else with this type of cancer was dead.  She never told them about her treatment in Germany until 18 months later when small tumour was discovered in her brain.  She had surgery to remove it.  It’s been 2 years and she is still alive.  She is currently doing chemo/radiation, but I heard she was currently not doing very well, which makes me sad.  She has two teenage children and a husband who has been taking good care of her since her first diagnosis.

Unfortunately, there are no guarantees in life when you have cancer.  You just have to make the best of whatever gets thrown your way.

When I went to Germany I met a really nice older italian man named Greg.  He has been going to the clinic for 2 years and it has helped him greatly.  I will tell you more about Greg in my subsequent blogs about my treatment.  His story encouraged me.  His story gave me hope and has made me question our health care system.  It’s not all that it’s cracked up to be.  But that’s just my opinion.

 

Dear Santa

My oncologist wasn’t there again yesterday when I went for my appointment on Friday so I requested the Mexican doctor again.  I really like him.

Told my needle nurse I was experiencing hand/foot syndrome and heart problems again (when I wake up I feel like I’m having a heart attack).  She told me to phone my new heart doctor and he would probably give me a Holter Monitor.  I’m not really interested in doing that because that thing doesn’t show much anyway.  I know I have irregular heart beats and the times when they occur.  Big deal.  It’s just an inconvenient gadget I get to carry around with me for 2 days.  I’m more interested in finding out my ejection fraction rate (how strong my heart is pumping) because I don’t want to have heart failure again.  It was a measly 42% a few weeks go and that was before the chemo. drugs.  It’s suppose to be at 55%.  That’s a bit disconcerting.  I’m hoping that the drug Bisoperol he put me on is helping with that.  The good thing is I haven’t flopped to the ground during the day because I’m taking it at night!

The doctor told me they were going to try one more round of chemo. and then check my spine to see if the tumours are still growing.  If they aren’t growing, I stay on Xeloda.  If they are, I’m going to be put on another chemo. drug, but it will be an I.V. one, not a pill. I’m hoping that my tumours have stabilized because quite frankly, I don’t want to be bald over the winter on some other drug.   I have a sneaking suspicion it will be Taxol (no hair, black fingernails) because I met someone else like me who couldn’t tolerate the Xeloda and they put her on Taxol next.  Yes, I know “Bald is Beautiful”, but it’s really freakin cold in Canada.

If I have to do an I.V. drug, that also means I would have to have another picc. line or a port, which is something else I don’t relish.  Remember the cow gloves I had to use every time I wanted to take a shower and the purple hives I got to boot?  No thanks.  This chemo I’m on that burns my feet better be torching those bloody spots on my spine too.

I asked my mexican doctor about any upcoming Clinical Trials because I wasn’t exactly loving the side effects I was having with this drug.  He said there are side effects on those trials too.

The good news is that he gave me my report on that other Clinical Trial I was on (called Impact) where they sliced my tumour and analyzed it for DNA markers.   I got the report, but don’t really know what it means.  All I know is that I have a “somatic mutation called PIK3CA C420R (67%)”.  There is a clinical trial going on right now at PMH to figure out appropriate dosage amounts for drug target therapy, but he said we have to exhaust the “standard treatment options first”.  That means chemo.  However I’m hopeful that this means there may be something  else for me in the future that can help me.

My kids are off to the Santa Clause parade today.  I should have written him a note too… Please Santa, I don’t really want to be bald for Christmas!

Christmas Cat dressed up