Alternative Cancer Treatment, Last Day (Feb. 14, 2014)

Excerpt from my diary Friday, Feb., 14 (Alternative Cancer Treatment, Germany)

We are on our way to Frankfurt now.  Had five injections before we left.  We took a direct train (for obvious reasons) and had to wait about a half hour at the station for it.  Wonder what awaits us there.

Oh, lord help me.  The guy sitting in front of us smells like he hasn’t had a bath in years and the guy behind us has the worse breathe ever!  The only way I know that is that when his damn cell phone rings and he starts talking I think I’m going to barf.  Maybe we should have paid the extra 50 euros and taken the first class tickets!  Fifteen more minutes and we are there.  Please just get off the phone and close up da sewer!

Thank heavens.  He’s off da phone.  Please no one else phone him.  Air.  Breathe.

Danka Shan.

 

 

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Alternative Medicine/Germany from Feb. 13

Excerpt from my Diary from Wednesday, Feb., 13

Bobo is learning (again) to give me my shots as painlessly as possible.  All I can say is he’s got a long way to go.  I had five injections this morning.  He did two of them.  You could tell which ones my husband gave me cause I was yelling my head off.  Dr Bukiebukie gave Bobo some rolled up cotton balls to put in his ears. As you can see, they get along famously, giggling like a bunch of school girls, as they pinch and stab me in the butt with needles.  Honestly.

Geoffrey had to do a two hour infusion today so unfortunately we ended up going to France without him and his wife.  I’m disappointed…they are nice people.  My feet are much better today now that the chemo is wearing off.

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Guess what? We are in a train and we are lost once again.  We were looking for the station Appenweier, which we are positive we didn’t see.  I told wonk wonk that I thought we were suppose to get off at 9:50.  It was now close to 11:00 and I could see snow.  IMG_0934 IMG_0932I asked someone on the train who spoke broken English and the guy said to go back an hour.  So now I’m guessing, as we seem to be heading south, that we are closer to Switzerland than France.  I asked him where was this train going and he said it was going to the fish.  Yet another adventure.  Now that I think of it, he must have meant Swiss. That’s right, we are heading for Switzerland, even though we are really suppose to be going to France.

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Now, we are back on another train on our way to Offenberger (some station, north of Triberg…you know, the place where Bobo really wants to get off to go to a Christmas store he saw, which, as he keeps telling me, should be open today.  IMG_0862It was closed on Sunday when we went there and he was very, very disappointed.  That is all he has been thinking about since then. I just kept humming the song “The Hills Are Alive with the Sound of Music because I swear we are well on our way to the Alps. Bobo said we would not do well on that show “The Amazing Race”.  I agree. I told him I would have left him behind because I knew we should have got off the train when I said so. It doesn’t seem to matter what name the sign says at the train stations, you just have to get off at the time it tells you to. Besides, I think I would be okay in The Amazing Race because I speak 3 languages, ask people for directions, and don’t pay attention to the stations on the train tickets, but the times we are suppose to get off!  Bobo said we could start a new show… The Wayward Travellers.  I think we should call it “Now where the F#%$ are we?”

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Okay… just arrived in France and discovered a McDonald’s with free wi-fi. Hurray! Took a lot of photos of the medieval town Strasbourg.  Would love to send them to you right now, but I can’t seem to send messages to anyone from my ipad…it’s not working properly… Will have to wait till I get home.

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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!

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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.

I Wanna Be A Shit-Disturber

expert adviceToday, I have decided that I no longer want to play nice.  I am no longer going to be a goody-two-shoes (which is what someone called me yesterday) because I feel like I’m  being taking advantage of.  This is a new thing for me…standing up for myself instead of being disgruntled and keeping anger inside.

I think I’m liking the “New Me”.

So today, when I went to Walmart and was being held hostage inside the store (this is what happens to customers who are stuck inside the store waiting desperately for the stupid store manager to come open the doors at 10:00 to let you into the mall).  I decided to do something about it.  I didn’t want to wait.

Three times I heard an announcement requesting the manager to open the large, glass sliding doors.  I saw a smaller door with a lock on it and thought, “Gee whiz, I can make my escape now if I just go over there and click it open”.  Dare I do it?  There were about 10 people waiting inside the store and about 7 people waiting outside and I REALLY wanted OUT.  So I walked up to the door, clicked it, turned around to all the people behind me and said, “I don’t know about you, but I’m getting out of here”.   I overhead someone saying, “I’m not staying here either”. Suddenly there was a stampede of people running through the door right behind me.

Take that WALMART.

My bad!  I like it.

I went to Toys R Us, got my gift card for Frack’s birthday party on Sunday, and made my way back through Walmart to get back to my car.  At this point I was wondering if I would be recognized by the camaras and be banned for life upon entering any Walmart store for opening their door without being an employee there.  Too bad, I thought.  Anyone stops me, I’ll give them an earful about wasting a terminally ill person’s time.

Didn’t get caught.  I was very proud of myself.  And I’m sure the other Walmart hostages were glad to get about their business too.

Then when I got home, I decided to phone the guy sent from Rona to fix up my leaky bathroom.  Told him he needed to come back to the house and do some touch ups on the work he did.  Decided to wait to tell him he was going to have to wash out the bathtub too before I sign the release form.  It’s got a white film around the tub (from the grout?).  If I have to call my house-keeper to come to the house and clean it up, it’s going to cost him 1 hour of her pay because I’m not going to do it and bust my back.  And my kids and husband shouldn’t have to clean up his mess either.  So there.


I must be on a roll.  Yesterday I fired my heart doctor.Back Together

I complained to the head of the cardiology unit (who used to be my heart doctor before they promoted him to the position of top dog).  On Thursday night, while scouring the internet for a new heart doctor, I discovered my old heart doctor became head cheese because his boss was involved in that “Orange” helicopter money scandal thing. Nice.  Decided I was going to give him an earful about how my new heart doctor is no where to be found when you need him.  Cathy told me to be nice or I’d never have a heart doctor again.

I started by telling him that he needed to be my doctor again because the new one I got was never around.  Whenever you call, you have to wait a minimum of 5 days for him to respond….and by that time, I might be dead.  Once he called me back 2 or 3 weeks later and I forgot why I called him.  So now, whenever I have a heart problem, I get my oncology nurse to phone him; but she doesn’t like phoning him either for the same reason.  I think he goes to a lot of conferences or something to learn more about people like me with heart problems due to chemotherapy.

In April my pharmacist thought it was weird that I was put on 2 heart medications and he phoned my heart doctor to question the logic of that prescription (this took several days).  When he finally got a response, the pharmacist couldn’t fill out the prescription because it didn’t have my name on it.  And the big kicker, after more phone calls and faxes, Shoppers Drug Mart finally got the prescription with my name on it but they couldn’t fill it out because the doctor didn’t sign it.  I think that whole arduous ordeal took about 4-5 weeks.

By June, I had my prescription and when I took both drugs, I had

1.  irregular heartbeats

2.  a strange cough

3.  insomnia

4.  a strange metallic taste in my mouth

5.  a loss of appetite

6.  a trip to the local E.R.  because I had severe chest pains and I thought I was having a heart attack.

And whilst sitting in the E.R., the doctor told me NEVER, EVER  to come back to this hospital with a heart problem because they didn’t know what to do with me and THEY COULDN’T FIND MY DOCTOR TO ASK HIM.  “Go downtown next time”

And then, after I get the boot, I found out that I had an appointment two weeks later with a replacement heart doctor because mine was gone until OCTOBER.

I could be dead by then.

So, I took matters into my own hands and stopped both the meds even though it said, “Don’t stop taking this medications without telling your doctor”.  Well, I can’t find my doctor…he’s in Boston.  I told his replacement, but he was rather useless because he didn’t want to advise me about anything without the other guys permission.

Needless to say, my old doctor is willing to take me back.  I’m happy.

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Stupid pplOne more thing….

Someone left a note on my windshield last week informing me that I was NOT HANDICAPPED and SHOULD PAY FOR PARKING.  Getting a bit tired of people keying my car too.   So now I am leaving my own note in my car beside my handicapped parking permit.

This car belongs to ayoung 

TERMINALLY ILL BREAST CANCER PATIENT

with METAL RODS in her BACK due to a FRACTURED SPINE and CANCEROUS TUMOURS on eight bones in her vertebrae.  Try driving backwards in this condition when you can’t twist your back. Even getting out of a car hurts. Carrying groceries? That will give me pain for at least 3 days if I try. Because of numerous rounds of CHEMOTHERAPY and RADIATION treatments, I also have suffered from HEART FAILURE and have even had a TIA / STROKE because of medication I’ve been on. You don’t have to be in a wheelchair or limping to be considered handicapped. So stop being angry because I’ve got a Handicapped Parking Permit and Thank God you don’t need one. I put on a brave face, but truthfully, I’m in pain every day of my life and I’d trade spots with you any day.



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 2- Germany

Excerpts from my trip to Germany (Saturday, Feb. 1, 2014)

So we went out to an Italian place for lunch/dinner…just to be safe.  I wasn’t sure that I was going to like the food in Germany, but I quickly found out that their food is much more healthier than ours. The menu said they had soup, but they lied.  No soup. The waiter was quite a character…he didn’t seem too happy about his career.  I don’t think he liked us “Americans” either.  If you speak English, you are American (unless you have a British Accent, that is).  I don’t like being lumped into the same category as the United States for some reason.  I am Canadian and proud of it.  The waiter disappeared for a while and went out the front door for a smoke.  I cannot believe how much cigarettes are consumed over here…you can’t go anywhere without smelling the cigarette smoke.  I found France like that too.

IMG_0584Bobo and I perused the menu.  It was priceless…so many english spelling errors.  Fruit des mers….see foot (seafood).  I took a copy of one side of the menu just so you can find all the errors for a good laugh (artishokes, artichocks, golic, and chees).  I wish I took a photo of the other side of the menu which was just as comical, but the waiter came to light the candle on our table.  It was a nice place.  He took our orders.  Came back with my husband’s  pizza…’cept he didn’t slice it.  Took us a while to get his attention to get his pizza sliced.  Later we discovered that every time you order a pizza, you need to slice it yourself.  Turned out our waiter was from Sicily.  He saw my name was Italian when I gave him my credit card to pay for our meal and he brightened up for a minute.

My German is truly non-existent. Thank heavens most of the people here have a general working knowledge of English. Went back to the Holiday Inn and tried to sleep for a while since we were up travelling all night and day.

Got up at 9:00 pm and tried watching tv…the stations are almost all Italian.  I don’t watch Italian T.V.; especially ones where the actors are speaking in English but the words are coming out in Italian.  Doesn’t work for me.  If there are any english stations, the shows are from the 1970’s.  I feel like I have travelled back in time.

My husband was happy because this place is full of italian restaurants and he will be quite content eating pizza for two weeks.

Here are some photos I took along the way.

Walking Through the Streets of Baden-Baden

Walking Through the Streets of Baden-Baden

Love the beautiful door fronts.

Love the beautiful door fronts.

Book Store with a Fountain inside.

Book Store with a Fountain inside.

True German Restaurant

True German Restaurant


Fountains in the streets.  Not sure what the huge statue is behind it.

Fountains in the streets. Not sure what the huge statue is behind it.

 

Beautiful fountains used in ancient times for people to get their water.

Beautiful fountains used in ancient times for people to get their water.

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IMG_0569

Fountains in the streets.  Not sure what the huge statue is behind it.

Fountains in the streets. Not sure what the huge statue is behind it.

True German Restaurant

True German Restaurant

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

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

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

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

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

Our conversation went kind of like this:

Me: We got to get off here

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

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

Bobo: I don’t think so.

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

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

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

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

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

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

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

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

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

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

 

Why I’m Not Doing Chemotherapy

 

Not my hands/feet, but you get the idea

Not my hands/feet, but you get the idea

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


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

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

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

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

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

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

 

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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