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!

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I’m Good (for now!)

Thought I’d better blog again because people are starting to phone and ask me if I’m alright.  I’ve also been told to keep it short!  So here it goes!

My Carepath nurse collected my CT Scan results and told me I was stable!   Hurray!  Life is good.  

 I think my hemoglobin is better now because I can walk up the stairs better without huffing and puffing and feeling like my legs are full of jelly.

I’m glad she let me know since I still haven’t seen my oncologist since November.  My January appointment consisted of sitting in the waiting room with my husband for 1 1/2 hours.  We had to leave again because my husband has 1 hour for lunch and he was gone for 2.  Funny how my clinic note (which I now have Internet access to) stated I telephoned and told them I couldn’t make it in for my appointment.  Hmmm……  not sure how I’m going to handle that.

Top-40-Funny-Minion-Quotes-and-Pics-Best-minionsI requested to see my oncologist in February when I was suppose to get my shots in the stomach. However, he is on vacation; so now I don’t see him until March.  Oh well, if I’m stable now, I’m good.  My hemoglobin, red and white blood cells were really low in December (worthy of a blood transfusion), but now I got some new medicine from Germany and am feeling much better.  Guess it was worth turning yellow for a while.

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And now for some humour….

This is a conversation about reading which I overheard from the back seat of the car….

Frack:    There are no good books in my classroom.  They are all so old.

Frick:     Really, in my classroom, the books are from the 1900’s.

Frack:    Oh yeah, well the books in my classroom are from Jesus’s time.

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life is shortPoor Bobo. He comes home one night with chunks of meat in his coat pockets.  “Darn,” he said, “Now I’m going to have to get my coat cleaned.”   He forgot to take his ziplock bags when I sent him over to my parents to fix their TV (they keep pushing the wrong buttons and then get no picture/TV).  Well, you know you can’t go into an Italian house without being fed something. Needless to say, he wasn’t prepared to hide whatever he didn’t want to eat so he stuffed the food in his coat pockets when they weren’t looking.  I laughed and laughed and laughed at him. 

I wish I was smart enough to think of concealing ziplock bags for food when I was a kid. 

Would have saved my butt from getting whacked more than once!

wooden spoon

Oh Crap, Now What?

Dear Life what the hell ru trying to do to me

Well, the results are in and now I really don’t know what to do.

Apparently the tumour in my right lung is 2mm bigger than it was in August.  In 2013, they saw something there.  On Jan. 2015 it was .9 mm.  In August it was 1.9 cm.  Now it’s 2.1 cm.

I don’t see my oncologist until the end of January.  I could always go back on that horrible drug capecitabine that burned my feet so bad I couldn’t walk.  Or I could ask to get hooked up to a picc line for a couple of hours on Taxol (chemo IV) which will make all my hair fall out, including my:

1.  eyelashes (so I will cry if it’s windy)

2.  my eyebrows (I never was that great at drawing them back in)

3.  my nostril hairs (nothing to catch the snot) and

4.  let’s not forget all my pubic hair (free Brazilian wax).

And let me remind you that Taxol was the drug that stopped my heart on my 2nd treatment.   Fancy going to my grave prematurely because of it rather than cancer.

Hmmmm.  Choices, choices.  Risks Vs Benefits.  Wait.  Wait.  I think I’ve made up my mind.

I think I’ll stick with Germany.  I could always go back in the summer and try some curcumin IV if things start to progress again, but frankly, I think I’m pretty stable now.

I just spoke on the phone with my friend who is a nurse.  She said that sometimes when technicians are reading a CT, there may be a shadow making a spot look bigger than it is. That makes me hopeful that my results aren’t that bad.  My CT Scan also mentioned a spot or two on my left lung that was unchanged in this interval.  Sigh.

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I had my junior girls volleyball try outs today and I must say, they are looking good.  Had a big fat juicy gluten free burger for dinner to get my hemoglobin levels up.  Tomorrow I’m going to go for my vitamin C IV in the morning (more oxygen) and then I’m going to revisit my salt cave in the afternoon.  Maybe all that salt in my lung will shrink and kill the damn tumour.  I wonder if anyone has studied that?  News Bulletin….Salt Kills Cancer.

I found a giant natural salt cave in, where else?  Germany.  Gotta add this to my bucket list.  You can sleep there overnight!  Check this out.  You even take a little kiddie train through the mountain to get to the salt cave. Who wants to come?

 

And now some special messages…..

Rumours have it that a Great Big Baby Shower was in the works for me at work.  Thanks guys, you truly are the best, really… (smirk!)

McLandress….loving those pictures of you lapping up the life of luxury in South Africa.  I have a job for you.  Can you get in a jeep and make your way up and down the east/west coast of Africa and every time you make it to another country, log into my blog so I can see it light up?  I’m not asking for much.  You are already over there.  Just don’t drive in the ebola territories.  I don’t want you getting hurt.  And watch out for the animals. (P.S.  I got Kenya, Uganda, and South Africa covered…you’re in charge of getting the rest).

Bobo….if you are reading this post.  I know you don’t like washing dishes until the next morning but really, if you are eating fish for dinner, the stuff REALLY needs to be washed right way or it gets quite SMELLY in the house.  So unless you want me to puke tomorrow morning, please, please, please, wash anything touched by a fish immediately upon consumption.

Sandy….good luck on your operation tomorrow.  Let me know if you want anything…a visit, some grub.  I promise it won’t be gluten free unless you really want it.  My kids won’t eat it, so I don’t expect you too either.  I can do take out too, if you’d rather.  But I don’t know where you live (you may not want me to know where you live).  If you do, just call (but not on my cell phone, it’s dead and still lost in this house somewhere) or email me. Luv you.  Hope you aren’t in the hospital long.  Same day service works best.  I’d get out of there quickly if I were you.

Doug….I’m bringing that cup I won with the bell on it next Thursday….. expecting good service!  My birthday is coming up.  Don’t forget my cupcake!  Ha Ha Ha!

Frick and Frack…no I am not having a baby even if you do want one.  Stop encouraging me.  It ain’t happening despite what the blood test results say.

Life boring without me

 

 

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.”

nutella

“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

normal

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.” 

couples

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.

advice

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…..

travelling

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!

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.

Another Rainy Day

 

image image imageimage imageMy happiness bubble burst today.
I woke up and its raining again.
I got to the concierge at 8:41 am and he told me my bus already left.
I was suppose to be there at 8:40. WTF?

Well that wasn’t true and my heart stopped for a short time and when the bus finally arrived the grumpy old man (who wouldn’t pick up my luggage and put it underneath the bus) tells me he is not dropping me off to my hotel, but one nearby. Yet on my voucher it says it’s going to drop me off at my hotel. Apparently that’s not true. So now I am either going to have to kill myself and lug my luggage a couple of blocks to my hotel in the rain or take a taxi. That should be good for my back.

I need my Bobo.  I need my Fairmont slippers and bathrobe.  And I’m really going to need my eucalyptus steam room after I lug my luggage around town because I’m calabrese, I have a testa tosta (hardheaded/stubborn)and I’m not paying someone to take me a few blocks to my hotel.

And to make me positively miserable, the grumpy old driver only listens to Country Music. Two and a half hours on a bus playing country music! Kill me now!

Oh, things are looking up! My ear phones are in my purse and my iPads in my lap as I write my woes to you this gloomy, rainy day.

Good bye country music! Hello One Republic!

Oh oh.  I have to go to the washroom and there isn’t a washroom on this bus!

I’ll Write later.  My stops coming up!

The Best Doctor Appointment Ever

I smiled all the way to my doctors appointment today, so happy that I was okay.  This is after the scare I had after being told and reading my last MRI report that I had extensive metastatic breast cancer disease throughout all my bones (including my skull).  Who wouldn’t have thought they had one foot in the grave after that conversation?  Anyhow, I got my test results from my LTD two weeks ago and found out there was NO metastatic disease in my bone marrow.  I’ve been on a high every since.

I couldn’t wait to go to the doctor to see what he was going to say about that!  Not often you have the opportunity to be smug about being right.

As soon as he entered  the room, with a smirk on my face, I quite cheekily said,  “So WHAT is in my bone marrow?”

Dr:  Nothing?

Me:  REALLY?  Nothing?

Dr:  Alright, alright.  So you were right and I was wrong.  Not good for the ego, you know!

I just burst out laughing.  He said he was glad I was right; it was the more favourable outcome.  And the bone marrow biopsy said it was a drug ‘causing all the fuss, not cancer.

He then said,  “So tell me now what are you going to do?”

“What do you mean?”  I said.  “Do you care?”

“Of course, I care”.  I just want to know what you are doing so I can write it down.  How long have you been off the Capecitabine (chemo drug).

“Two weeks”, I told him.

“How did you manage to get your hemoglobin up?”, he asked after looking at todays “normal” blood test results.

“Easy”, I told him.  “I picked up the phone and called Germany and said, “Hey, ya got something to jack up my hemoglobin” and they sent me some liquid stuff.”

“What was it?”, he asked.  “Gelum”, I answered.  He rolled his eyeballs wondering what the hell I was on.  “Hey, it’s working, isn’t it?”, I told him.

“How long have you been on that?”, he asked.

“Two weeks…soon as I figured out there was nothing in my bone marrow”, I answered.

“You do realize that cancer always comes back.  What are you going to do then?” he asked me.

(That wasn’t exactly a very positive thing to say, don’t you think?)

Plan A is to stay on the German medicine because it’s working and  I’m stable.  I don’t want to go on the chemo drug because it burns my feet.  Besides, my kids are sick and if I’m on chemo I have to stay away from them and everyone else who’s sick, and you trying doing that.

So the plan is, if the tumours in my back start growing again, I will revisit the option to go back on chemo, but I FEEL GREAT and I’m sticking to it because it works.

Well, at least he didn’t say I was crazy.  I think he’s watching his tongue now that I was right.  He’s just puzzled, that’s all.  Brainwashed by the FDA.  But he is a good guy and I really like him.

He told me he wasn’t going to have me go through another CT scan (organs) in November, just another MRI and we’ll go from there.  That made me happy.

thDidn’t tell him I’m going back to Germany soon to boost my immune system and for a top up of little piggy stem cells.  Decided he had enough of a shock for one day.  Hah hah!

 

 

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.