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.

———————–

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

 

 

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The Results

51049a380d3c9663fd69f6de2dc617c7Well The Cat Says It All!

T’was a good day.

Speaking of cats, I’m certainly feeling like I have nine lives.

Went for my dreaded 9:30 appt fearing the worst. Took Bobo with me…he brings me good luck. No doctor ever says anything bad when he is around. He is also my comic relief. When the nurse asked me for my red hospital card, he asked her if I gets points for it. She started laughing and then he told her if you rack up enough points, you get a tongue depressor!  He should have be a comedian.

Let Go what you Cant ChangeWhen I saw the radiation guy, he said everything was okay. I gave him the stunned disbelief look. “Whaaat?”, I said. How could this be? I got a whole bunch of things getting bigger in my spine and everything is okay?” I’ve got the report right here…I have another team of doctors who just told me that I needed to call my surgeon because my neck needed to be stabilized before you zapped me again.

“Who told you that?” he asked. My health plan has this thing where they phone you every week to see how you are doing and they always get me my reports before I see my doctors and tell me what’s going on. “Well, they are wrong”, he said. “I just looked at your MRI and everything is within the normal parameters”.  You are a complex case and don’t listen to them. (This is coming from they guy who told me that I had cancer in my neck (C5) last June and when I came for my simulation appointment, discovered the technician was wrong and it wasn’t anything.  So really folks. Just who am I suppose to believe now?)

My husbands sitting next to me, with his “I told you” cheshire grin on his face.  He told me all week-end that they were all whacked.

Meanwhile, I was seriously intent on booking a trip next week to Europe to see all the stuff I had on my bucket list before I became a quadriplegic. I was going to go to Pompei, Rome, Milan, Venice, with a side trip to Germany to pick up my intravenous bags of Curcumin, then I was going to take my daughter to see the Eiffel Tower (her dream), and then take the bullet train to London to see a more palaces and other great places. I figured I’d better do everything I wanted to do while I was still walking!  I was going to do the Queen Latifah thing….cash out whatever money I could find (RRSP, who needs that?) and LIVE IT UP! If you haven’t seen her movie, called “Last Holiday”, it is funny and a must see. (You can download it on your computer for free on YouTube).

Still in a bit of shock. But very happy. And eternally grateful that the good Lord spared me once again.

8b4624cdcaf77c9ac9efb0ce0e701dca

 

My radiation guy asked me what my oncologist wanted to do for me re: treatment.  I told him he wanted to put me on the foot burning chemo (Xeloda/capecitabine) and I wasn’t going for it.  I couldn’t walk every other week because my feet were burning and peeling.  “Don’t they have anything else for you?” he asked. “Yeah, the intravenous I.V. ones where all your hair falls out”.  He just smiled at me.  He must think I’m nuts.  I told him I was sticking to the treatment from Germany as long as I possible could because most of the people I know that were in the same boat as me and stayed on conventional treatment were dead.  One just died 2 weeks ago.  He said, “Some of them were my patients, weren’t they?”  I just looked at him and didn’t say anything.  Then he told me that some of his patients were going to Germany for some kind of hyperthermia thing.  I told him that wasn’t what I was doing.  Didn’t want to get into another conversation with a doctor about piggy stem cells to be told it was quackery once again, so I did not elaborate.

5c16a19e1905a67d8568e99170fa42a87896cefbd0a3e17496212592ad6e1a8fe913fc3cfdf4586867e9cf2517ad4942However, I’m thinking the next time a doctor asks me what kind of treatment they are doing for me over in Germany, I am seriously going to tell them that I’m getting stem cells from a unicorn.  It sounds better.

 

 

P.S.  My new shipment has arrived from Germany.  More needles.  One shot in the butt every morning, two at night, and drops/tinctures three times a day.  My husband enjoys it more than me.

My Newest Paintings and A Brush With Spiderman

Thursday, March 15


Yellow BunnyYesterday I drank so much water (16 glasses), my urine was no longer yellow. My tongue was white and I have developed a SERIOUS shortage of saliva. I’m hoping the cause is from the strong antibiotic I was on and still not because of my radiation treatment. My ear has also started to hurt again. My family Dr. is on vacation and her secretary told me I may need to go back on antibiotics.

 

Purple BunnyMy former principal hooked me up to a new friend, whom I will name Katie. Katie, like me, is also a mets. breast cancer patient and does a lot of researching. However, her mets are in her liver which she has kept stable until recently for about 2 years by naturopathic means. She is a fountain of knowledge and I am so blessed to have this new connection. I could talk to her on the phone for hours. We are able to bounce ideas with each other and learn from one another. I never met anyone else like this. And I owe her big time….

 

google when sickI have been getting a bit jittery over the last 2 – 3 weeks because my medications from Germany have essentially run out and I’m waiting for more. I got a letter from the German Dr. saying my metabolism has improved, my kidneys are light/insufficient (?), there is calcium in the urine, and I have an inflamed intestine. My prescriptions were sent to the pharmacy, but I haven’t received a call for my VISA number yet for them to ship it here. I hope it doesn’t get caught up for a month in customs again. Meanwhile, I’m thinking my immune system is still run down because of the radiation treatment. What if I can’t get rid of this ear problem?

HousesappreciationKatie suggested that I go get Vitamin C I.V., which I heard of, but never tried. So off I went to the Robert Shadd Naturopathic Clinic on Leslie St./Sheppard and gave it a shot yesterday.  Last night I started having a headache when I went to bed and prayed to Brother Andre, like one of my good friends told me to do.  Some time during the night I had one hell of a fever. “Thank heavens, my immune system is back to work”, I thought as I drifted off back to sleep.

Cherry BlossomsStill had a headache this morning when I work up, but I felt different. I felt cured of whatever ailed me. The heavy sinus feeling in my head was gone. I’m still thirsty, but not nearly as bad a yesterday. That’s a good sign. I have to go back every week of Vit. C for 5 more weeks. Hopefully it will blow up any cancer cells running amuck in my system and improve my immune system.

mini cherry blossum

Spent the morning painting and reminiscing about my friends Michelle Baskie (who passed away of pancreatic cancer) and Maria O’Kane (esophageal cancer). I miss them both so much and think of them often.

 

tenantLast night I looked for information about another person who died on the week-end of metastatic breast cancer. She was diagnosed with breast cancer in her bones at the same time as me  (fall of 2012). Her name was Lisa Bonchek Adams. The similarities between the two of us are eery. Most of the meds we took were the same and she had the same tumour/gene markers (Pi3K). We both had problems with our heart because of chemotherapy and I think I started reading about her because we were both featured in the same Toronto Star article about 2 years ago. I didn’t really read her blog regularly as it had a way of upsetting me and made me feel like I was doomed.  I saw on the news the other day that Lisa passed away last week-end. Her cancer spread to her bones, liver, lungs, and finally, her brain.   I think, I know actually, that I would have been in the same boat had I not gone to Germany for treatment there, no matter what my oncologist thinks and says about it (quackery).

cceb279a36216f145ab2ab856f28e9f5Gotta go to get my shots tomorrow and defend my position as to why I am doing “Nothing” about my cancer. I’m going to tell him that Lisa is dead and I’m not.  I think I made the right choice.  Besides, what drugs is he on thinking that I’ll go back on the feet burning drug Xeloda?  Katie told me she had a heart attack on that drug.  I’ve had 3 separate heart issues because of chemotherapy and he wants me on that one?  Other options being offered are intravenous, loose your hair ones.  I’m going to try everything else I can think of first.

Purple LadyI have gone to a few of “Art For Cancer Foundation” workshops over the last couple of weeks and tried some new projects. I like learning new things, even if they are a bit out of my element like this purple lady I painted. That’s also where I learned to paint the “Cherry Blossom” ones and the surrealistic homes above. I like going there because I learn new things and I have a finished piece of artwork by the time I leave. I also painted some Easter Bunnies (when I was sick at home) which I found on pinterest so I could practice how to do them before I taught them to a grade 2 class after March Break. I love pinterest and found lots of things I want to try out, when I have time. Next week I’m planning to work on my blog and write about my escapades in Germany at Christmas time.  That was quite an adventure.  One last painting to show you….

Purple Winter Sky

________________________________

images-2Friday, March 13

You won’t believe what happened to me after I visited my friend Wanetta who works at CAMH.  I was returning to my car.  The light was green, but I only had 8 seconds to get across the street.  Should I do it?  “Yeah,” I though, “I’ll make it, but I’d better RUN.”  So I did.  I’m running across the street and almost made it in 6 seconds when, low and behold a giant man in a Spiderman costume comes
barreling down the street on a skateboard.  “Holy Shit”, I thought, “I’m going to get hit by Spiderman”.  I stopped dead in the 3rd lane.  “WHOA, Missy”, he calls to images-3me in a very LOUD, Authoritative Voice.  You should NEVER JAY WALK!  “What?  What?  What are you talking about?  I HAVE A GREEN LIGHT, buddy!”, I yelled back.  “Oh…”, he answered. Well you never know, I may not be able to use my special powers to save you?”  WTF?  Special Powers?  Is this really happening?  I made safely to the sidewalk, glancing at Spidy beside me.  He had the whole get up on, mask, suit, and skateboard.  “How the hell can you see?”,  I’m thinking…..” You are going to have to save those special powers for yourself riding on the street on that thing in that get up!”

As I made it to my car I quickly pulled out my ipad.  I gotta get a pic. of this guy and put it on my blog.  But unfortunately, Spiderman disappeared as quickly as he appeared.  My Hero….not.unnamed

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.

Alternative Medicine/Germany from Feb. 10/11

Excerpt from my diary of Trip to Germany, Feb. 10-11, 2014

On Saturday I had a 2 NaCl  intravenous and iron/artesunat in my non-lymph node arm.  I’m getting a bit anxious about Tuesday when I find out whether or not the treatment is  working.  The skin underneath my eyes were turning a bit black after the iron infusion. I look like a raccoon. Today I had to do a urine sample and I am now hooked up for an ozone treatment.  The first two times they tried to find a vein, they collapsed.  My right arm is quite purple.  IMG_0782They are going to have to use my left arm now.  I think my intestines are doing much better from the look of my stool this morning…much much better. I would like to take a short day trip to Strasberg in France.  Got to go either today or Wednesday because I have afternoon colon cleanses booked for Tuesday and Thursday. Looks like one of the doctors is preparing some more injections for me.  Augh! This afternoon it was raining so we went to the Faberge museum…nice place. It’s not always open. No one is allowed to take photos of anything in there, but there is a giant rabbit in the garden in the back I will have to get a photo of.  Going to hang around with the Italian couple again.  They feed us well and they are fun to be with!

—————————————————————————————–

Had my ozone/ferritin infusion this morning and two shots.  First time, my vein collapsed.  Second time it was good.  Couldn’t move to jinx it; it hurt.  Quietly listened to Christmas music Sia sent me from Australia on my ipod. Went to see Dr Sommer in the afternoon…was dreading what he was going to say.  He is a man of few words…he didn’t want Bobo in there either which made me nervous…but everything is pretty much okay.  Lymph system and kidneys are still not functioning optimally, but everything else is good.  He said the cancer is dormant/sleeping and I don’t have to take the chemo drug…alleluia.  I don’t think I could stand taking the Xeloda anymore anyway…my feet are ruined and need to recoup.  Hopefully the German drug artesunate is going to keep the cancer in check…which I’d much rather take that than xeloda.  No side effects. I need to send a urine sample here in three months (May). I’m suppose to have a CT scan in Toronto in March.  All is good, thank the good Lord for that. IMG_0923Celebrated with a glass of champagne, prawns and spaghetti aioli olio, espresso, and the most amazing dessert made out of hazelnuts (tasted like Ferrero chocolates).  It was soooo good.  Sucked the brains out of the prawns too.  They were so delicious…grossed out Bobo because the eyeballs were still on them. 
Decided to try my luck at the casino.  Geoffrey and Carmella joined us.  Geoffrey told us that no one wins there…he was right.  It wasn’t like Vegas at all where you hear the constant dinging of the bells from people winning and it really stunk of cigarette smoke.  We were there for about 2 hours…lost $40…it kind of was a rip off, but it was good entertainment for a while. There were hardly any people in there.  And get this, you have to pay to get in!  We weren’t able to go to the card tables because we had to dress up to get admitted…we were delegated to the downstairs gambling department.  Now my tummy hurts…couldn’t take the smell of the cigarettes; it turns my stomach.  Oh well.  IMG_0774Unfortunately, I also dropped my phone on the granite floor at the casino after talking to my Australian cousin, Boo.  Gotta go find my friend at the Internet cafe to see if he can get it working again or else I will have to buy another phone.  (he is very nice to me…he gave me a ticket to the Festspielhaus so I could attend a concert of a woman (Alice Sarah Ott) playing Mozart and Schubert on a grand piano).

It’s nice outside, spring-like.  I like walking around here, even at night.  Very safe.  Need to phone home and hear how the kids did with their report cards!  Hope Claire is okay with the cats being in the house. Tomorrow we are hoping to go to Strasbourg, France.  Looks like they have a lot of medieval buildings to see.  It’s an hour away by train.  I really enjoy travelling by train..it’s so quiet and relaxing to see the country-side. I like being a tourist…beats being stuck in the clinic with an IV attached to you.  Tomorrow should be a good day…only 4 injections…that’ll give my arms some time to heal.  Today I asked Dr Bukiebukie (that’s what his patients call him…Italian for “holes” …get it…they guy who pokes holes in people) to heat up my arms to get my veins to pop up.  It worked.  My arm didn’t turn black all around the puncture mark after we heated them up with a lamp.  Going to try that again on Thursday…hopefully that will be the last of my many infusions. Au revoir!  Gotta practice mon Francais.

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!

 

 

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.

 

Bone Marrow Results; Angels 1, Doctor 0

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

So guess what they found in my bone marrow?

NOTHING.  Absolutely Nothing!

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

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

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

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

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

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

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

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

Angels 1: Doctors 0.

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

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

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

dance in the rain

No News and Ford Fest at the Hospital Today

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

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

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

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

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

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

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

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

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