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.”

 

Advertisements

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.

————————————————————-

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.

IMG_1943 IMG_1942 IMG_1941 IMG_1940

 

 

 

 

 

Bone Marrow Biopsy

Went for my bone marrow biopsy with my sister yesterday.  Took my son’s ipad with all the games on it and hoped for the best.  When my husband has to give me my shots/injections from Germany, I play on the ipad to get my mind off of the upcoming Ouch!  Sometimes my husband gets it right and it doesn’t hurt too much, but then sometimes he gets it in the wrong spot and I’m cursing up a storm.

Anyhow, back to the biopsy.  Two needles to freeze my lower back, worth two loud groans.  Then, when the nice indian doctor thought it was frozen enough, he stuck, what I believe to be a big needle into my bone marrow (he told me I would feel some pressure while he did the aspiration), which got another loud OUCH from me!  And then for the big kicker, he had to take a piece of my bone for examination…which was worth one hell of a yell…especially when he was having difficulty getting the bone sample and he had to go back and forth to crack the sucker.  My sister watched the whole thing and thought it was cool.  I envisioned that he got something like a wine bottle screwtop and cracked my bone with it….but I don’t really know since I was trying really hard to concentrate on my game.  However,  all I could think of was just when is this going to be over.  Kept playing my game Chef’s Diner until they rolled me over and put a big bandage on it  for bleeding.  He apologized for what he claimed was the barbaric way they have to get bone marrow which hasn’t changed in 10 years.

A nurse tried to get my blood shortly thereafter, but was unsuccessful.  I asked her to try heating my arm with a heating pad which I learned from Germany…and that seems to do the trick.  Bingo, out came the blood.  When I got home later that afternoon, I saw my results on infowell.  All my blood test results (liver/kidney etc) were finally normal except the HEMOGLOBIN.  I am now getting dangerously close to getting a blood transfusion…it’s at 84 (normal is above 120).  It’s been going down by 10 every week since mid-August.

So I checked on the internet and found that one of the medications I’m on from Germany can cause anemia.  I stopped taking it today and now am, unfortunately back on chemo, which is something I really, really didn’t want to do.  I think I was taking too much Artesunat (200 mg); which is generally used for malaria in Africa, but apparently works on preventing cancer cells from growing.

I pray they don’t find any metastatic disease in my bone marrow.  Won’t know until Friday.  Hate waiting.

—————————————————————————-

Frick and Frack are quite content in their new school.  Frack is no longer coming home crying and having temper tantrums like he did when he was at the other school, so I know I made the right decision in moving.  Apparently my son’s tormentor is after another kid at his school who lives around the corner from me.  His mother said her son didn’t want to go to school and couldn’t sleep at night because he was afraid that kid was going to be in his class.  Unbelievable.  Honestly, so glad to be out of there, though I feel for this up and coming victims.

Frick is going to sign up for Flag Football, Borden Ball, and perhaps Cross-Country and is looking forward to going to Quebec this year.  She came home last week and said,  “Hey mom, I actually LIKE school”.  This was coming from the kid who whenever someone asked her if she was looking forward to going to school, would look at them as if they were nuts and  emphatically reply, “NO!”

Thankfully the two of them are settling down nicely and I take comfort in knowing that.  I am looking forward to going to the school and doing some art lessons, but the lack of oxygen has kind of got me homebound for the moment.

I hate making lunches and told the kids to make their own from now on.  I don’t see the point in sending food that comes right back, so I’m on strike.  It’s working pretty good.  This morning my ass hurt so much from the biopsy, I told them to make their own lunches because I was on drugs and was not getting up.  It worked.  The day before, they conned my sister to take them to the store to buy some snacks.  I told them only to buy healthy snacks and they essentially brought home stuff I would never buy for them, like Lucky Charms Cereal, honey donuts and something that looked like Hostess Twinkies.  This is after I made some healthy carrot/pineapple muffins (which they won’t touch).  I wonder what kind of lies my children fed my sister…Oh yes…mom will let us buy that. I’m sure their lunches were filled with nothing but junk today, but I guess I’m just going to have to accept the fact that it didn’t kill me when my mother bought that kind of junk the odd time; it won’t kill them either.

snacks

Russian Roulette With My Life

Well  tomorrow I’m scheduled in for a bone marrow biopsy because my last MRI was somewhat less than favourable.  Something is going on in my bone marrow.

Not sure how long it will take to get the results back.  From what I understand, I am going to be awake during the procedure. They are going to freeze me with a local anesthetic and insert a needle in either my back or my pelvis to get a piece of bone and bone marrow to biopsy.  I’m rooting for the pelvis because I have enough problems with my back.  I’m going to take my bottle of oxycocet and hope for the best when the freezing stops working.   I heard that it is a painful procedure.

I’m going to soon be blogging about a cancer treatment I went to in Germany in February.  I didn’t write about it because I didn’t tell my doctors what I had done.  (I was afraid I would be dumped as a patient and not considered for any clinical trials).  But the cat’s out of the bag now because I told my oncologist, so now I can share what alternative treatment I had.

Not sure if I made the right decision…kind get the feeling that  I am playing Russian Roulette with my life.  But what is done is done.