Feb. 13, 2015

I am NOT having a good day.

Find a cureWent to the oncologist today and got my shots in the stomach. When I left, I got the feeling he was not on board with my decision to continue doing the treatment in Germany which he claims is “quackery.”  Take a deep breath.  Too bad, so sad, it worked for 10 months and I’m going to keep doing it.  I’d rather do that, than have my feet burn off with chemo.  I also talked to him about going to the naturopath to get intravenous vitamin C.  He said, “It’s not proven to be effective”.  My husband said that there are lots of books and journals in Germany that say what they are doing works.  Doc. said there weren’t enough case studies done.  I asked him what it was going to take to do that.  He said it will never happen because you can’t patent something like vitamin C….it’s not profitable.  Bunny:snowmanYou need lots of money to do trials with lots of people.  If the big Pharma companies have nothing to gain, it will never happen because of the expense.  There you go folks.  Find your own medicine.  Plants aren’t profitable because you can’t patent them.  Synthetic drugs are the only one’s that “count” in our world even if they have toxic side effects.  Nothing else matters because someone is getting rich from this.  It is disheartening.  It is disgusting really.  Not a good day.

hairy cat fabioSo today I am itchy.  My neck is itchy.  My back is itchy.  And guess what… my pelvic region/crotch/groin is also very, very, itchy (and I don’t want to scratch there because I don’t want any weird looks from people).  There has been very little hair there since my chemo treatments five years ago and now I can safely say that what was left of my scarcely populated pubic hairs has now been successfully fried with radiation.  And my skin looks burnt brown.  Apparently I’m not suppose to have any kind of sun exposure on any of my newly “radiated” parts for at least a year; doubt that will happen any time soon (unless I decide to put nudist colony on my bucket list).  Nahhhh.   Well, at least I don’t have to worry about spending money on a brazilian wax job; it’s already been done for free thanks to medical care.  Had to buy some $50 medicated ointment for my newly parched skin.  Big pharma makes more money.  Argh!!!

Had to drag the kids to the hospital today because it was a P.A. Day.   Frick and Frack are used to it.  It’s happened before.  They refuse to go to the “Magic Castle” place where kids go while their parents have their treatments.  My kids prefer to play on their computer gadgets during my visits.  As long as I feed them pancakes from McDonald’s or buy them breakfast at Druxy’s, they are happy.

imgresdonating bloodI saw an old friend from Gilda’s Club who was getting blood work done and oddly enough, two other friends “found” me at PMH because they “recognized my white, furry, hat” and decided that, yes, that was really me.  One of them recognized “The Hat” from my Germany Pics.  I thought that was really funny.  I taught one of her children many years ago.  Another person I ran into was from my Thursday night Christian Cancer Support Group.  She said she spotted me from a mile away because of my “Hat”.  Glad I had it on!   My daughter told me that the elderly people in the waiting room at the blood lab were eying my hat too when we were in there.  Poor people.  They probably didn’t have any hair because of chemo. and needed a warm hat.  It was bloody cold outside today (- 18 or -32 with the wind chill or something like that).  My alpaca kept me toasty and warm!  I think it is quite possibly the best purchase I have ever made.  Especially today.  The city of Buffalo (just south of us) had  lots of snow earlier this week and now are experiencing this really cold, bitter weather, so the kids all got to stay home today.  They really should invest in some of these kinds of vehicles to get their kids to school! snow days

Wincrazy

Meanwhile some f*$#$ squirrel decided to jump into my chimney to keep warm last night and it cost me over $500 to pay someone to climb on my roof, install a trap door, and cover all the grates (5) up there.  Damn squirrel!   I could have bought him a couple of alpaca hats and thrown them on top of my roof for that much.  He’d have had his own cosy, furry nest.  Now I need to go back to the casino in Niagara Falls to win some more money on the slot machines.

When I got home I searched for today’s “blood work results” on my computer since they weren’t ready at the time of my appointment.  My platelets are low and white blood cell count is red flagged.  Everything else seems to be okay.  I suspect these new developments are because of my radiation treatments, although I’m not sure what to do about it except eat seaweed and soak in himalayan salts.

ebola flight

 

Guess I’m also going to have to protect myself from sick people at the moment.  Would this be considered extreme?  How ’bout I bag myself every time I go out ’til my counts go up?

 

Cat Scan

Gotta have a CAT scan in April.  Bit concerned about that since I couldn’t take my German injections while I was doing radiation treatments for 3 weeks.

 

I figure there may be some growth in my bones because of this.  My doctor however is thinking it may have spread to my liver, lungs, or brain because I’m not “on” conventional treatment.

I would like to prove him wrong….again.

Passing of Michelle Baskie

Thread

I went to see my spine doctors nurse on Monday to check out the bump in my back.  She said it was just the screw used to attach the metal rod to the bone.  That was a relief.  My radiation doctor isn’t able to request a brain scan with the neck CT Scan (separate tests) …guess I will have to address that one with my oncologist the next time I visit him.

My kids are at camp at Gilda’s Club this week. They are off to Lego Land in a snow storm today which hopefully will be a lot of fun.

My daughter cried all the way home from camp yesterday after I told her that her last year’s teacher, Mrs. Baskie passed away that morning (diagnosed with pancreatic cancer in June).  Her former teacher was so very kind and supportive towards me and my daughter.  She had a very strong faith in Jesus Christ and I know in my heart that he is taking care of her now.  I feel bad for her husband and three boys now that she has passed, but I also know that she was in an awful lot of pain in her final days and that is not an easy way to live.   Her funeral is on Friday.

Love the ppl god gave you, need them back one day

Celebrity In The Doghouse

Just wanted to let you know that I’m apparently going to be in the Toronto Star tomorrow (Saturday) in the Life Section.  Reporter Nancy White wrote an article about people who have heart problems because of chemotherapy and my oncologist gave them my name for an interview last spring.  Anyhow, there is a photo of me and a short blurb about my heart failure experience if you get the paper delivered to your house and you want to take a look.  I’ll try and post it on my blog once I get a copy of it.

I recently joined an art class for cancer patients in the west end.  I finally made something I liked which I’ll post on my blog too (Monet inspired, of course….can’t seem to get that beautiful garden/waterlily pond out of my head).  We’re having our last class on Monday and an art show during the afternoon.  It’s at 238 Jane St. from 3:00-5:00 if anyone is around there and wants to see.

I also joined a Graphic Novel class at Gilda’s Club on Monday nights.  I decided to do a children’s book about a Tooth Fairy because my son was intent on catching her one night. Hey, you never know, I may try to publish it when I’m done!

On Wednesday I did a video shoot for the Nanny Angel Network.  They’re the ones who sent wonderful child life specialists to my house (for free) to watch my kids when I was undergoing Chemotherapy and Radiation.  They count on donations by generous donors and the organization is having an up-coming fundraising event…so there I will be, at some point on the BIG SCREEN once again.  I’ll post the event on my blog when I find out more about it in  case any of you reading this blog is interested.

I didn’t realize that a person could become a celebrity just by having cancer!

Speaking of celebrities… the kids and I were at the Apple Store at Fairview Mall earlier this week when 3 guys from the T.V. show “Next Step” came in the store.  My daughter couldn’t believe it and was mesmerized.  The person at the store who was helping me asked her if she wanted to take a picture with them  and then got the ball rolling by using those radio speaker things they have in their ears and contacting the employee servicing the “Next Step” dudes.  Before you knew it, my kids got their pics. with them using our ipad.  My daughter was SO HAPPY….she couldn’t wait to instagram everyone when she got home.

The story doesn’t stop there though.  We were at the Apple Store to get the Ipad fixed (it got dropped way too many times and the screen was cracked).  I thought they were just going to put a new glass top on it.  Wrong.  They gave me a brand new one for $50 (I had an AppleCare Warranty on it).  That was kind of neat.  No more dents on the side or cracked screen.  I was happy.  At least I was happy until we were on our way home and realized that the pics. of the gents were on that Ipad and everything had been erased.  So I got to hear a whole lot of crying on the way home….and a whole lot of crying the next day when we went back to the store to recover something that couldn’t be recovered.

C’est la vie, unfortunately.

So if anyone see’s these “Next Step” guys again…give me a ring because seriously folks I am going to hear about this the rest of my life.  I am so in the “Dog House” right now.

aspirin children headache

Maria O’Kane Speech

Growing Older

Sorry it took me so long to post my speech for Maria O’Kane’s Memorial, but this week has been crazy with appointments and Christmas Concert.  Here it is….

My name is Maria Pisani-Brown and Maria O’Kane was my friend from Gilda’s Club, a support network for cancer patients.

Maria meant a lot of things to a lot of people.  To the people of Gilda’s club, she was an inspiration.  Everyone in the Wellness group knew we were going to have a good time when Irish Maria showed up.  She had a knack for making us laugh and brightening our mood.

Maria was quite candid and matter of fact about what her life was like as a cancer survivor and mother of two, one child being autistic.  You couldn’t help but feel in awe about her outlook in life and wonderful attitude despite her illness and her hardships.  Maria was a truly remarkable lady.

Maria had some very interesting character traits.  She wasn’t one to mince words, which was something about her I so admired.  She wasn’t afraid to tell you exactly what she thought, even if it did land her into trouble.  I remember one time she told me a hilarious story about how she was travelling on the subway and saw a bald elderly oriental woman.  Thinking the woman had cancer, Maria felt compelled to say something to her.  “Don’t worry.  I have cancer too.  Things will get better”, Maria told her.

The lady looked her straight in the eye and said “What?”.  Me no have cancer.  Me believe in Buddha.  Buddha squish cancer like a peanut.

Maria was mortified.  “That’ll teach me for opening my big mouth,” she told me as I laughed uncontrollably at her tale.  Maria was great at telling stories.  She knew just how to take centre stage and captivate an audience with her beautiful Irish accent and her witty humour.

Another character trail I admired about Maria was that she was strong willed and persevered.  Despite being told more than once she had 3 months to live, she kept ticking like an energizer bunny rabbit.  You couldn’t help feel that Maria was invincible.  The odds of surviving esophageal cancer to five years was less than 3 percent.  The doctors at PMH eventually told her that she was the longest surviving esophageal cancer they ever had and they weren’t sure what to do with her.

Maria had a lot to say about doctors when she heard cancer patients tell her they only had a short time to live.  “What do they know?”, she would say.  “Are they God?  Don’t listen to them.”

Although Maria didn’t often go to church, she was more catholic than many people who do.  Maria would do anything for a person in need.  She would give money or food to people in the street.  If there was a child who needed a coat in the winter, she would provide one for them.  And despite being so giving, she really had a hard time accepting help, because she was so fiercely independent.  She genuinely cared for others and put others needs before her own.  She always listened attentively to everyone and gave them good sound advice.  She was a real mother hen.

help one another    repay

If you happened to be one of her friends, Maria had a strange way of making you feel protected.  She was fiercely loyal too.  One day I had an appointment with a doctor who I call the Dragon Lady.  Maria knew how much I dreaded seeing this woman and offered to come with me.  That was the first time I actually felt comfortable talking to the Dragon Lady because I knew that if she started to roll her eyes at me when I asked questions, then Maria would have her head on a silver platter.  There Maria was, bald and beautiful, starring her down like a Doberman ready to pounce.  I usually left my appointments with the Dragon Lady in tears, but not this time.  I really felt good when Maria came with me.  It made the time go by faster and we had so much fun talking together.  I also really admired her for not caring about what people thought about her bald head.  She would show it off, tumour and all.  I don’t know many people who would have the guts to do that.

help someone

Another trait I so loved about Maria was that she encouraged people to follow their dreams.  I talked to her about going to Paris and painting in Monet’s garden and the next thing I knew, I had a plane ticket and was rearing to go.  Maria encouraged me to travel to France over the summer and I did just that.  She also kept pushing me to write stories and get a blog up and running because she believed in me as a writer.  I think I changed and became a much better person as a result of knowing Maria.  She inspired me to take chances and do the things I really wanted to do in life which I don’t think I would have without her.   Maria wasn’t afraid to live life to the fullest and neither should we.

Although Maria is not here with us in body, I believe she is here with us in spirit…and we just have to look for the signs.  I received my sign from her shortly after I posted a comment and photo of her on her Facebook page.  It photo was taken in the spring from when we went to St. Anne’s Spa for a massage and some really great food.  Maria had often talked about going back there one day.  Whenever I saw Maria, the first thing she would always ask me was “How are you doing?”   Lately, the answer has been, “My feet are burning from the chemo treatment I’m on”.  She would just shake her head.  Maria loved to have her feet massaged and didn’t like the side effects I was having.

IMG_0379  IMG_0366

Shortly after I posted that picture of Maria at St. Anne’s Spa, I went to open up my mail.  That’s when I found a letter from St Anne’s Spa congratulating me for winning a free Caribbean Rejuvenation Foot Massage.  I laughed and thanked Maria for thinking about me and my feet.  I felt like I had just received confirmation that she was alright, and she was still looking out for me.

And I bet if you look hard enough, you too will also find signs that she is looking out for you.

I miss you my friend, but am sure we will meet again.  I will forever remember her telling me and I quote… “Those damn Catholics.  If they truly believed in the Resurrection of Jesus Christ, then why the hell are they so afraid of dying?

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