Diagnostic Testing… Now Waiting for Results

Dear friends,

Today I did most of my diagnostic testing (eye photo, blood work, hands/feet photos, urine and saliva tests).   Tomorrow I will find out if they can help me.

I’m worried.  I am in bad shape.  Hard to sleep at night when I’m constantly coughing and spitting up mucus.  Don’t know if that parasite cleanse was a good or bad idea.  Don’t know if my gut is reparable as so many food items are causing me grief and I don’t know if my body can handle the treament protocol given my drastic weight loss.  Also worried that my cancer may be active again and what do I do about it if it is in my lungs (as my oncologist keeps insisting).  One thing for sure.  Not enough oxygen in my blood as it was black when I glanced at it in the vial.   Shit.

I told Dr Mariam that I stopped taking the injections they gave me since January because I thought my husband hit a nerve a couple of times and I was having trouble lifting up my left leg as a result.  She told me I was probably right and that she would try to put some of the injections they were going to give me in my IV instead.  However, some of the stem cell ones had to be injected in the butt.  That concerns me.

Its 1:30 in the morning   Time for bed.  I see Dr Sommer and Dr Mariam at 2:00 tomorrow so I can sleep in.

🙏Needing some prayers🙏

Koln (Cologne, Germany)

 

Sunday, May 21, 2017

One of my former church choir directors, Steven Handrigan, told us about this fabulous Cathdral in Cologne, Germany after he took his students from the St. Mikes Choir School to sing there.  You could tell it was a church that really impressed him by the gleam in his eyes every time he talked about it.  So I decided it would have to be on my bucket list.  So off I went with Maria and Falitza.

Here is some of what we saw.

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It was enormously tall and black.  A stark contrast from the Duomo in Milan that was also very intricate, but pristine white.

The stain glass windows inside were most colourful and bold depicting pictures of Mary, Christ and the apostles.  They were quite beautiful.

Street painters.

And a homeless duck… with a pint of German beer of course!

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Koblenz

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Decided to visit a place called Koblenz before we head off to Cologne or koln.

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It was really something.  We took a cable car to the Ehrenbreitstein Fortress and saw the most magnificent view of the Rhine River overlooking the German Corner (Deitsches Eck).  That is where two rivers join.  It was neat watching huge boats get swept away at the corner trying to get up the next river.

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The fortress was quite grand too but it required a lot of walking which I am not in the best of health to do right now.  It took a lot out of me and I had to take a painkiller by the time we got to a restaurant where we could rest and eat.

I’ve come to the conclusion that there are really no gluten free options at any restaurants in Germany. I’m stuck pretty much just eating salad and the odd soup if I can find one with no milk, cheese, tomatoes or wheat.  However the view we had from the outside, then the inside (it was cold and we moved) was awesome.

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Maria had her pint of German beer (she claims she will have one everyday until her treatment starts and then she will be good).

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The fortress was immense.  It guarded the waterways and railway lines.  Here are some pics.

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Really could have used my heating pad after that long walk but I kind of blew it up in Weisbaden the night before.  I plugged it in and put it in my pillow to warm it up as I went to the bathroom to brush my teeth.  When I got back the thing was melting on my pillow.   Didn’t know the voltage was so high in Europe that even with a converter, it would overheat the heating pad.  The metal coils were protruding through the plastic cover. I was lucky I didn’t plug it in and take a bath because it would surely have caused a fire by the time I got back.  I didn’t know what to do with the smelly burning plastic thing.  I ended up shoving it on the shower floor so it would cool and disposed it in the morning.

Good thing I didn’t burn the hotel down.

 

 

Go Figure

Good News.

I just got ALL my test results from my CarePath nurse which I requested and I’m glad I did because I got some new information.

I always ask for a copy of my report/scans when I leave my doctors office. In January, I was given only one page, that my brain wasn’t bleeding.  Just like I thought…my cavernous hemangioma was occupying some land in my right cerebellum.

What I didn’t get (or was told) at that appointment was that that thing in my neck that they wanted to zap (cancerous para-spinal tissue) was GONE!  Just like my German doctor said…It wasn’t cancer .

Remember?  Here they wanted me in a clinical trial to get rid of “the cancer” near C6  (2 high dose treatments that had a 10% chance of breaking my neck).

Go figure.

So what is a poor slop suppose to do if they didn’t have this same service as me where You can request ALL your documents?  How do they know if they were giving all the facts?

Makes you wonder.

P.S.  I still have an interesting tale to tell you, but I’m waiting for the right time to spill the beans.

 

 

Oh My Bleeding Brain, Not!

Had a spinal MRI on December 23rd.  So at my appointment on the 28th of December, I was told my cancer in my neck/spine seemed to be stable, but my brain was bleeding.

That made me think…hmmm had that test on December 23rd, if my brain was in fact bleeding, shouldn’t I be dead?  Something is wrong here.

I told my radiation dr that it was probably the hemangioma I had in my brain which was found when I had a stroke.  He felt “better” about that, but he still ordered me an emergency MRI which I had on Monday, 17 days later because he had not seen it on any of my previous scans.

The results?  My brain is not bleeding.  They just noticed my cavernous hemangioma on this prior scan and it hasn’t grown or changed since 2012 when I had my stroke.

Oh, and I don’t have any brain mets either.  Glad to hear that there isn’t anything in my brain but what was always in there in the first place.  However,  I really am not happy I had to have that MRI because the contrast dye they give you goes through the blood-brain barrier and I’m not sure how to get it out!  Who knows what chemicals I’ve got lurking in my bloody brain now?  EEEK!

Thank God they found nothing because I was really concerned they were going to take my drivers license away and I don’t think I could handle that.  I would go nuts.

I was already plotting what I was going to do if I got bad news.  I was going to start a Go Fund Me campaign, get on a plane, and go right back to Germany for a different cancer therapy… probably a month of Curcumin IV (I’m pretty sure that goes through the blood brain barrier).  But I’m stable and don’t have to think about it now.  I’m convinced your prayers helped and you know who you are!

I have decided on thing though.  I don’t ever want to do chemo (taxol) again because I know it will kill me and I don’t think radiation is the answer either as I’ve maxed out.

I am done with that.  The answer is elsewhere.  I can’t do treatment here.  It doesn’t work for me.  Grateful I am doing well.  Big relief.  Sigh.

I don’t see any doctors for 3 months now.  Thank heavens.  I can do without the stress.  No more scanxiety till April.  Hurray!

 

 

Never A F**n Dull Moment

So today I went to see my radiologist all ready to hear the words that my bone marrow was full of cancer (because that’s what usually happens when I come back from having treatment in Germany).

But that wasn’t what he said.  He said everything is stable but your BRAIN IS BLEEDING!

Really?  Seriously?  WTF?

Do you have headaches?  Well, yes, actually I had one this morning.

I’m going to send you to have an urgent brain MRI.  Hopefully you will get one some time next week.  But if you have any more headaches, call me.

Forget that shit.  If I wake up and have another headache I’m going to check myself into Emergency where I will have a scan done right then and there.  And what if I don’t wake up?  Should I be telling my daughter that if I don’t wake up tomorrow, to call for an ambulance.  That will probably freak her out.

My radiation Dr. had me do some tests to see how coordinated I was.  Hey, this reminds me of when I had a stroke”, I told him.  “Let me guess, is the area I’m bleeding in happen to be in the right cerebellum?”  “Yes,” he answered, a bit shocked.  “Well, that’s where I have a hemangioma”, I told him.  “Where did you have that scan done?” he asked.  “Right here”, I told him, “In April 2010”.  He disappeared for a moment and found my scan on the computer and said that made him feel a little bit better.  But then he also asked why wasn’t this picked up before?

I sure don’t have the answer to that.  But here is my question. If my scan was done on December 23rd and it was now December 28, why the heck didn’t anyone phone me and tell me before now?  Honestly if my brain was bleeding all that time, I probably should have been dead by now.  But I’m not dead.  I am very much alive.  And therefore I am not going to panic about it because that serves no purpose.  When this passes, this is going on record as another time there was a mistake.   That will be mistake #6.  But who’s counting?

So is my brain bleeding or is this something that’s been there a while?  Tune in to the saga next week when I go for my MRI.

Everything Tastes Better When You Can’t Eat It

Friday, December 15 (Photos of Frankfurt, Germany)

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Nice Tie Sculpture!

I’m home now and we have had quite a bit of snow here in Toronto.

It’s beginning to look a lot like Christmas.

My Lufthansa flight last week went as planned…wasn’t sure whether the pilots would still be on strike, but they must have settled because all was good.

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Bobo has been watching too many of those Border Patrol shows late at night, because when the declaration note came for us to write down what we were carrying, he told me to mark “YES” under “Are you carrying any type of food, dairy, seeds, nuts, blah, blah, blah.” He said they were going to confiscate my stuff anyway, but at least I wouldn’t get charged and go to jail.  Really?  Really?  Do ya really think I’m going to jail because of some cake?  I figured I could talk my way out of it, so I told him stay quiet behind me while I spoke to the customs officer. 

 

img_4542I think the customs guy got a kick out of dealing with me because he was laughing his head off after our brief little discussion about what I was bringing into the country (I think they are paid to look very mean with no hint of a smile so you’d crack under pressure).  I told him I bought some Christmas Cake (Stollen) and I was sure it had nuts and seeds in it and I also had a package of stuff for my Gluhwein.  With a twinkle in his eye, he asked, “And What Exactly is Gluhwein?”.   “Oh, it’s amazing,” I said.  It’s like mulled wine and you have to put some seasoning things in there like cinnamon, cloves, and cardamon seeds”.  It’s delicious.  Those are the seeds I brought back.  He chuckled and said, “Is that all you have to declare?”  I thought for a second and said, “Yup” and he let us go on our merry little way.  Was going to tell him we also hauled a big antique clock for my dad half way across the world in an extra suitcase, but thought better of it.  The less said, the better.  If he was going to let me keep my Christmas Stollen and Gluhwein kit, I was happy.

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If they took my Christmas Cake, I wouldn’t have been too upset ‘cause I can’t eat it anyway because it probably has wheat in it.  I am truly bummed out about all the foods I have to stay away from for 3 months.  It’s been a difficult week scrounging recipe books for things that have no dairy products, eggs, nuts, and is gluten free,  I made some muffins and cookies according to this new criteria and they tasted like shit.

Don’t you know, everything tastes better if you can’t eat it.  Sigh.

img_4560Two more things I wanted to tell you.  When I was hooked up to the Global Diagnostic Computer in Germany, it indicated that I have traces of Lyme Disease in my body.  May have been there for a long time.  Lyme Disease comes from a Deer Tick and screws up your hormone balance and immune system (so your body doesn’t recognize cancer is a threat).  Wondering if this could be the root cause of my problem.  Sent a blood test express post for analysis (which I was told may or may not be accurate…sometimes it reads a false negative).  Waiting for the results.  Dr. Mariann told me if it does come up as a positive reading, not to worry about it because she can cure it in two years.

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Going to have an MRI next Thursday and will be seeing my radiation doctor on the 28th.  That should be fun.  Especially when it will look like my bone marrow is completely full of cancer again and I tell him the thing in my neck is not cancer.  I’m not doing anything for at least 3 months until the dust settles and I have another MRI.  Then I will have a clear picture of whats going on, if anything.

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I’m reaching my limit on my free wordpress blog space.  I’m at 85% capacity.  Not sure what I want to do.  Don’t really want to pay $18 a year for my own domain, so I may open up a new blog soon.  We shall see.  

Hoping my followers will keep following me! 

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Looks Like I May Not Need to Fry My Neck After All

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My test results are in and it looks like I’m not going to have to fry my neck after all.

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I told Dr Sommer my radiologist wanted to do 2 high dose treatments on my neck and showed him my test results.  He read the report and said they do not know what’s in there.  Just like what my friend Karin (who is a nurse) said.

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He said my intestines are toxic and if we get that under control the inflammation/problem in my neck should disappear and so should the problems I’m having with my eyes.  It’s all connected to the intestines.

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I asked if it was my cavities in my teeth that was causing the toxicity.  He said no it was something I’m eating.  Later Bobo put two and two together (I essentially eat only organic food at home) and came up with the fact that I’ve been eating smoked salmon every week and that might be the cause.  Other than that, maybe I should get our water tested when I get home.  I need to figure this out.

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So today I had 4 shots in my butt to help my liver, spleen, gallbladder, intestines and brain.  Then I had to drink something akin to Alka Seltzer to soften my stool for my first of four colon hydrotherapy cleanses.   Once again I’m full of (toxic) shit!

Trying to con Paul into having one too on Friday.  Let u know how that goes!

Btw, Santas coming to town in a hot air balloon on December 6!

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God Help Me

Friday, November 4, 2016

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Today I am out of sorts.  This generally happens to me when I have to go see my oncologist and today was no different.

Bobo came to me.  Together we try to figure out the insanity that transpires during my appointments.  My 9:45 appointment began at 11:15.

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He, my oncologist, sent me his newest guppy to figure out what I was doing.  She was a real b#*@! and I didn’t like her.  I actually argued with her and I’m proud of myself for sticking up for myself. She was telling me I’m fine and my oncologist wouldn’t have to see me for 6 months.

“Hang on,” I said.   “I have a report saying I have cancer in my neck which should be radiated in a clinical trial and some new spots in my pelvis from L2-S3.   How is it I am fine?”  I think they are trying to get rid of me.

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She also said that they wouldn’t be doing my monthly injections at the hospital any more.  Go to CCAC.  “Well that’s nice,” I responded.  “Find me someone who knows how to inject the needle in Scarborough and I will go.  And good luck with that….I don’t enjoy being tortured.”  Asked her who I go to to complain about this.  I think she was shocked I said this.  Too bad.  I tired of explaining my life to new people every time to go there.

I told her I wanted to see my oncologist because I wanted a second opinion of an MRI from another hospital.    She told me he was busy.  I insisted.  She left us for a bit.

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So in he waltzed, late, with a parade of young hopeful oncologists (3 from Brazil, 1 from some other country).  “Oh this is going to be fun”, I thought.  “I have an audience, students…my specialty.”   I told him the reason why I wanted another MRI at a different hospital was that I wasn’t convinced about what I was told about my neck.  After all, they messed up before on a tumour on C5 and then told me it wasn’t what they thought it was during the pre-op. radiation treatment.  I went to a chiropractor and had my neck painfully adjusted and maybe it’s just inflammation.  He downplayed the previous C5 neck error.  I must say I had the students hooked though.  They laughed when I told them I wasn’t going to be zapped for nothing.

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My oncologist told me that the hospital MRI machines were different and what specific part my radiation dr was looking at may be different then theirs and what was the point in doing it again?   He said if I wasn’t symptomatic (feeling pain), so it didn’t matter if I decided not to do anything right now.  He then told me that my cancer was slow growing and even if I did nothing (which apparently the treatment in Germany counts as nothing to him), it would be slow.  He is in complete denial that my “alternative” treatment is slowing the progression of the disease.  Grrrr.

I find his explanation of my condition fascinating as I am young, pre-menopausal (spreads faster than in older patients), and was diagnosed with a INVASIVE DCIS breast cancer.  Invasive.  Hmmm.  What does this word mean?  The Oxford Dictionary describes it as Tending to spread VERY QUICKLY and undesirably or harmfully.  For example:  ‘patients suffering from invasive cancer’.

Enough of the bullshit.  Bobo said my onc is having difficulty accepting the truth that the treatment I’m doing in Germany works.

So essentially the appointment concluded with…. no MRI or monthly shots at PMH.   And he doesn’t want to see me for quite a long time.  He is going to Mexico for a few weeks (and not to check out cancer treatments in Tijuana because he doesn’t believe in that “stuff”) and I’m not scheduled to see him until Feb.  But when I got home my appointment was emailed to me and now I’m not scheduled to see him until March.  That’s 5 months away. That’s a long time.  

On a positive note…no appointment anxiety.  That could be a good thing.  Right?

So how do I feel about this?  I feel like trash.  Taken out to the curbside.  No one is monitoring my monthly blood work.  Some gumba in Scarborough that doesn’t know how to stab me in the stomach properly to give me my 16 guage needle will be administering it for 5 months.  I have no idea what is really going on in my body (neck, lungs and lower back) and if I should be alarmed.  One guy says I’m fine.  The other one wants to zap me.  I think I’m going to get Bobo trained to give me the shot in the stomach if this CCAC thing doesn’t work out.  Help!

At this point, I just want to run to Germany.  

I booked one night in a castle on one of the week-ends I’m there!  

The way I see it.  You Gotta have Fun while you still have a neck and can walk.

God help me.  I’m really feeling tired of dealing with this crappy disease.

Life is Grand

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I apologize for not writing in a very long time, but I’ve had too much going on.  A few new developments in my life…some good, some not so good.

First, my medications from Germany got held up since early September.  UPS and Canada Post are having difficulty delivering packages with alcohol contents because they think it is a bomb.  Canada Customs no longer allows anything with alcohol get through without a lengthy delay, so I’m waiting for a friend to bring my tinctures back home with her.  She’ll be back in early November.   Thats 2 months without medicine.

My last “report” from my urine sample (in August) said I was toxic/acidic and to come back to Germany for an intensive treatment.  Then I had an MRI which evidently shows cancer in my soft tissue (para-spinal) at C6 (bottom of my neck) and some new spots in my lower back (L2-S3). 

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My radiation guy wants me to participate in a clinical trial where he would radiate that neck area with two really high dose treatments.  Trouble is there is a 10% chance of it fracturing my neck.  

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I was told not to worry, they would take good care of me and would put my neck in a brace. 

I asked him if there was a chance that I would become a paraplegic and he kind of skirted the issue and said…”Yeah”.   Well, guess what?  As Maria O’Kane would say…I don’t like that plan.” 

Another alternative is to do 5 low dose radiation treatments but I don’t think its as effective.  “But wait a minute,” I said to my dr.  “I thought the last time I talked to you, I reached my maximum radiation allotment.”  “Oh no, you can have more”, he responded.  Really?

what-the-hellWell, I’m not entirely convinced I can have more radiation.  As far as I understand any more radiation and I’ve upped my chances of getting leukemia, non-hodgkins and various other cancers.

Besides, I think my thyroid has been fried from the last set of radiation treatments on my neck as there were many nodules found throughout my last ultrasound.  My family dr just told me that if I live to old age, I will need to be put on thyroid medication because of what they already did to me.  Why didn’t anyone inform me of that before?  Plus I think there is a part of my lung that got fried too. I need my voice to sing in choir at church.  Not planning on doing anything on my neck at least until after Christmas Concert. 

I know this may seem like a long shot, but I’m hoping that what they think is cancer in my neck is inflammation from going to a chiropractor in August.  It really hurt from all the adjustments and I had a bump on the side of my neck.  So I bought some special cream/oil and the bump went away.  

trustNow I have to convince my onc. to redo the MRI at his hospital instead of the other one because I want a second opinion.  My reasons are that they screwed up too many times before for me to believe them.  Remember when I thought I was getting C5 radiated and then they told me it wasn’t what they thought it was?  Remember the two times they said it was in my bone marrow and it wasn’t?  I had to have a bone marrow biopsy to prove them wrong.  And how about that blood test that indicated I was pregnant when I wasn’t.  Oh and how about the time I was told the cancer spread to my lungs and I was going to have to get it drained in 3 weeks if I didn’t go on chemo.  Didn’t happen.  Seasonal allergies.

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Sometimes I don’t know how I stay sane.  I don’t know if I’m right or wrong this time.  Time will tell.  My tumour markers from my recent blood test are normal.  What gives?  Counting on some little piggy stem cells to fix me up.

So I booked my ticket to Germany.  Bobo is going with me.  And we are going to see the Christmas Markets again!  Yippee! 

In the meantime, I’m going to the Naturopathic College and getting weekly Vitamin C IV’s because that treatment shrank my tumours before.

So what else is happening besides having to worry that my neck may break? 

I’m coaching a junior boys volleyball team at school.  I also am starting to teach adults with cancer at Art For Cancer Foundation.  I volunteer as a guest artist.  This week I participated in a video for this charity organization.  I’ll link it to my blog so you can see it when it comes out.  Got my hair done in time for my interview.  Finally found a real, organic hair dye from the States called “Hairprint” which I like.  Thanks Stella!  I finally used it.  Don’t look like a granny anymore!

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Next I’m venturing in some new interesting territory.  I applied for a scholarship for an Advocacy Training Workshop for The Canadian Breast Cancer Network.  I didn’t think I would be selected because I wrote my application at 3:00 in the morning the day before it was due, but guess what?  They want me!

Not entirely sure what it involves yet.  All I know is that I’m getting free food and a night at the Pantages Hotel in Toronto.  They are going to teach me how to become an effective communicator.  And I think I get to share my views on what its like to be a metastatic cancer patient to a room full of big wigs and perhaps the media too.  Not sure they are going to like what I have to say, but oh well, too bad.  This could be fun.  It’s interesting what life throws at you.  Life is grand.