Christmas in Austria

Hello to all our Friends and Family.  We hope you all enjoyed a wonderful Christmas with your loved ones.  We had a great celebration here too, and even picked up a tree at the market to decorate for our apartment.  On Christmas Eve day, we cooked and ate a yummy roasted chicken dinner, then went to the Rathaus (city hall) to hear an advent choir.  After that, we made our way to an English international church service, which was lovely and gave us a chance to sing many Christmas carols.  In the evening, we opened our gifts and ate (again!).

Christmas morning dawned bright and sunny for our train ride through the mountains to Judenburg in central Austria.  Our hosts, Hans, Grete and Michi Pucher (relatives of relatives) treated us like royalty with wonderful food, photos, singing, photos, touring and more photos!  A highlight was a drive to a small village in the mountains where we encountered our first snow of the winter.  Then we took the train home in the evening on Boxing Day.

This week is my last week of treatment.  I had another round of low-dose chemotherapy followed by a whole day of hyperthermia under sedation last week.  Thinking back, my strength and health were really going downhill in the weeks prior to coming here, and even for the first 3 weeks here.  I am happy to report that my bones no longer feel like they will break with each twist or bump.  My pain and energy are definitely better and I'm able to walk around with crutches again.  I am looking forward to working out each day to rebuild my muscles once we get back home (next week!).  The plan is for me to return for a 3rd chemo/hyperthermia treatment the week of January 23 and likely 4-6 weeks after that.  It's not the most convenient way to receive health care, but it seems to be working, so I'll go with it for now.

Alexis has been a real trouper during our Austrian adventure.  She has endured learning her times-tables during homeschooling as well as long walks with her grandparents.  Something new since coming here is her new love of reading.  She has read the first 4 Harry Potter books and is well into the 5th, which is 766 pages long!  Although the circumstances that brought us here are not ideal, we are thankful for the gift of more family time.

As previously mentioned, Will has enjoyed running in Schonbrunn Park, which is the grounds for an old, famous palace with beautiful gardens.  He has also continued with his own stroke rehab for his left arm (muscle stimulation, range of motion, weight-bearing exercises like push-ups).  The doctor at my clinic also provided access to acupuncture and hyperthermia to help with Will's recovery (since they are "colleagues").  It has been slow-going, but it seems that there is some improved sensation in Will's arm and hand as well as better movement in his shoulder and elbow.  Unfortunately his hand is still not moving in a useful way.  Once home, he will start out-patient therapy.

My parents have been an absolutely wonderful, much-needed support for us here.  We have all really enjoyed having extra visiting time, since we usually live so far apart.  They walk miles each day, exploring the city.  In fact, it seems to me that they may have caught the European travel bug.  They so enjoyed our visits with the Puchers in Judenburg that they are already figuring out how they might be able to return for another visit and perhaps explore more of Europe sometime in the future.

We have enjoyed our stay in Vienna, but we do miss everyone from home.  Thanks for your blog comments, emails and encouragement.  Take care and God bless!

Shawna, for Will, Alexis, Willie and Linda

Interviews

As part of Alexis' homeschooling, she asked us the following interview questions.  We'll share our answers so you can get a taste of what our Austrian life has been like for the past 5 weeks:

Q:  What do you like best about Vienna?
A:  The styles of the old, fancy buildings; Efficient public transportation; Markets; Coffee; Focus on art, history and music; How clean it is; Feeling safe; Beautiful Christmas decorations; Amusement park; The little restaurants, bars and cafes; All the cute dogs (they're even allowed in restaurants!).

Q:  Is there something you don't like about Vienna?
A:  Grey skies; People don't share the sidewalks very well; Crazy drivers; Smokey restaurants (unanimous on this one!)

Q:  What do you think about the food?
A:  Desserts look like fancy works of art; Roasted chestnuts and wiener schnitzel were good to try but wouldn't want them often; Street hot dogs are excellent; Meat selection at grocery store isn't very good; Restaurant  food is frequently deep fried; Bamboo restaurant has a good Mongolian buffet; Love the pancakes, desserts and Viennese soup; Food is delicious; The food is ok but forgettable; Love the soup.

Q:  How do you like the music?
A:  The classical music is beautiful and suits the city; Love the ballet and opera; The music is really cool, especially the ballet with the music; I like the German music; Fantastic!

Q:  How do you spend your time every day in Vienna?
A:  Shawna:  Monday to Friday at the clinic.  Evenings in our apartment making dinner and playing games.  Weekends sight-seeing and reading books (have read "The Preacher's Daughter", "The Help" and "One Thousand Gifts").  Haven't felt great until the past several days, so have laid low.  Thankful to be more up and about lately.
Linda:  Walking to see the sights, playing Barbies with Alexis, home-schooling, going to the clinic, spending time with family, making pancakes.
Alexis:  Usually spend my time with Daddy or Papa and Grandma, but sometimes go to the clinic with Mommy.  I go swimming, walking, looking at shops and palaces, and do school work.  I liked being in Vienna for my 9th birthday!
Willie:  After breakfast, I go to the clinic with Shawna every second day.  At night, Linda and I go for a really long walk and window shop, then we stop for a drink.  We also have to do grocery shopping.  (Dad also got to celebrate his 60th birthday here!)
Will:  I like to run through Schonbrunn Park.  I also go to the clinic with Shawna and explore with Alexis.

Q:  Do you have a favourite place in Vienna?
A:  The Innere Stadt (city centre) with all the old gothic buildings; The many Christmas markets because I like looking at the crafts; Pool; Amusement park; Palaces; Schonbrunn Park; The Naschtmarkt (1.5km year-round market near our apartment, dates back to the 16th century).

So there you have it.  Although the circumstances that brought us here aren't great, we are really enjoying getting to know a new city, country, culture.  We had a nice day last weekend in the village of Baden and soaked in their mineral pools for a few hours.  This weekend, we get to see more of the countryside as we take the train to Judensburg to spend Christmas with the same family we had lunch with a couple weeks ago.  We are honoured by their invitation and look forward to a change of pace and scenery.

Hopefully your pace isn't too hectic and you are enjoying the lead up to Christmas.  We wish you all a very Merry Christmas and we look forward to seeing everyone again early in the New Year.

God Bless,
Will, Shawna, Alexis, Willie and Linda

Good News

Hello all.  Before I share the good news of the day, I must clarify something regarding my last post.  When I complained about not having access to the chemo-sensitivity testing in Calgary, it was not a knock on my oncologists there.  For the past 8 years, they have treated me very well by Canadian standards and I have great respect for each of them.  It's just the processes in Canada that frustrate me, because everything has to be based on randomized controlled trials and it takes decades for changes to be instituted.

Okay, onto the good news...my tumour markers have decreased by 50%.  Yay, you say, what the heck are those?  In metastatic breast cancer, there are some proteins in the blood that can (but don't always) indicate "tumour burdern", and decreasing numbers can mean that there is less cancer present in my body.
(See http://labtestsonline.org/understanding/analytes/ca15-3/tab/glance for an explanation of the CA-15 tumour marker).  Dr. Kleef was pleased but surprised that I would show an improvement so soon.  I have been feeling very low on energy and hope for the past 3 weeks, so although it's not a miraculous cure, this news is a gift and a lift to keep me going.  We are thankful.

As for the fatigue, it is due to low hemoglobin (red blood cells) and I will be having a transfusion tomorrow, so that should give me a physical boost.  The medication given last week was successful in returning my white blood cells to normal.  I am also on several natural supplements each day that have some good evidence behind them as being "anti-cancer" (beet juice...as gross as it sounds!, melatonin, boswellia, hydroxycitrate, hypericum, vitamin D, indole-3-carbinol, lingzhi spore oil).  At the clinic, I also receive high dose vitamin C, artesunate and alphalipoic acid by IV into my portacath.  I only list them in detail for those of you who have a keen interest in the details.  Feel free to glaze over this paragraph if you're not one of them!

Enough with medical details, onto tourism.  Last week, we were fortunate enough to be invited for lunch with my cousin's wife's father's cousin (how's that for close relations!) and her husband and daughter.  They took us to a traditional Viennese inn restaurant in the oldest part of Vienna.  We are thankful that their English is worlds better than our German, and enjoyed the conversation.  On the weekend, we ventured to an area called Prater, where we rode on the world-famous ferris wheel that was built in the 1800's.  The view from the top was amazing.  This weekend, we'll aim again to go to Baden to experience the healing mineral spas.

Christmas is just around the corner.  We wish you and your loved ones joy as you anticipate the spirit of Christ's birth.

Love,
Shawna for Will, Alexis, Willie and Linda

From Classics to Chemotherapy

Here I am again with our little update...After feeling a lot better from the flu on Saturday, we did some more exploring in Innerstadt (city centre) on Sunday and bought tickets for a chamber orchestra "konzert" on Monday.  The concert was played by the Vienna Residence Orchestra in relatively small ballroom of the Palais Auersperg, a palace where Mozart performed on the harpsichord at age 6.  The sound from the instruments (violins, violas, flute, cello, bass and piano) was very rich as they performed several pieces from Mozart and Strauss.  A few of the numbers were accompanied by ballet dancers and opera singers.  They even had a few comic moments to make the evening very enjoyable.  Will was pleased to hear the lead violinist playing on a "stradivarius" violin; Alexis loved the ballet; my Mom could've listened to more of that music for hours; I loved the whole experience, but couldn't stop gauking at the chandeliers!  (Dad opted out of this event).  Interestingly, a viennese coffee house (Cafe Dommayer) that we've been to a few times by my clinic is the site of Strauss's first concert.

And that's the end of the Classic's paragraph.  Onto Chemotherapy...

Before I got here, at the request of Dr. Kleef in Vienna, I had arranged to have my 2010 tumour biopsy sample sent from Calgary to Professor Bojar at a lab in Germany.  Once I got here, Dr. Kleef also sent Dr. Bojar some of my blood so he could examine my live circulating tumour cells to determine if my cancer cells have changed in what makes them live and die.  It turns out that the chemotherapy drug I have been on from Calgary would have been effective in 2010, but according to my current blood cells, it is completely NOT killing my cancer cells right now, but is apparently wreaking havoc on my white blood cell count, which was determined Monday to be critically low (which puts me at high risk for infections).  I had asked my oncologist back home twice about doing this type of chemo-sensitivity testing, but it is apparently not part of their standard practice and she did not know of any reliable labs who do this, nor whether the information obtained from such a test would be useful.  I am trying to present this in the blog in a reasonably objective, non-emotional way, but anyone who knows me can imagine that I am angry and not sure what to do with that anger.  If/when my current cancer treatment approach is helpful, I'll be looking to meet with some higher-ups in Alberta Health Services to share my story.  If you've got connections, let me know when I get back.

So, needless to say I'm done with my previous chemo drug.  I was given Neupogen to boost my white blood cell count which responded well, and was given a different chemo drug (Oxaliplatin) at 40% of its usual dose, followed by a full-day of whole-body hyperthermia under mild sedation.  I'm told it went very well, but have no recollection of that part of the treatment.  Now it's a "wait and let the drug take effect" while I continue to do and take the other immune-boosting treatments.  I think my next dose of the oxaliplatin and hyperthermia combo is aimed for 4 weeks from now, just before we're due to go home.

God Bless,
Shawna

Site-Specific Immunotherapy

I am writing this blog post in my pj's in bed with a fever/flu.  We were supposed to go to Baden today, a little village close by known for its healing mineral springs, but we'll have to postpone it for another day.  Will and my Dad are also under the weather, but seem to be perking up a bit as the day goes on.  My Mom and Alexis went swimming at an apparently "awesome" indoor wave pool/waterslide centre.

Due to our short notice in coming to Vienna, we weren't able to book the same apartment for our whole stay.  We moved to a new place on Thursday, and although small, we now have 2 little side-by-side apartments where we can stay for most of the rest of our time here.

In my last post, I spoke of Hyperthermia (whole body and local), which is a type of "treatment in which body tissue is deliberately exposed to high temperatures in order to damage and kill cancer cells or to make them more sensitive to the effects of radiation or other anticancer agents". (Moss Report)
 One of the other treatments I receive on a daily basis is called "Site-Specific Immunotherapy" (SSI), which is a safe but experimental technique based out of Vancouver.  It has apparently been well documented that some people experience spontaneous remissions from cancer following acute infections, likely due to increased immune system activity.  Using this info, the idea is to inject killed bacteria such as Staph. A. and E. Coli to "trick" my immune system into activating my natural killer cells/macrophages in my bone and liver, killing the cancer cells they find there.  It's like a vaccine, but more specific.  Besides a tender tummy from the injections, there don't seem to be any side effects from SSI.  The company that produces and studies these SSI's is called QuBiologics, in case you want to look up more.

And that's our science lesson for today.  God bless!
Shawna

The Clinic

We're into week #2 of treatment here in Vienna.  The link to the clinic I attend is: http://www.hyperthermie.at/en/.  Their website explains a bit about hyperthermia and shows some pictures of Dr. Kleef and the equipment used for this modality.  In other blog posts, I'll explain some of the other therapies I am receiving.  I would say there is some improvement in pain in my sacrum/tailbone area, which is where last week's local treatment was focussed.  This week I have asked to aim the local hyperthermia and infrared treatments more at my left hip joint to further treat my pain.

The clinic is in a chic, trendy area of Vienna known as Hietzing (similar to Kensington in Calgary, but a bit fancier).  There is a large park and palace nearby, lots of shops, a traditional Viennese coffee house, streetcars, white Christmas lights, etc.  It's a lovely area to stroll through when my treatments finish early enough.

The clinic itself is new (they just moved in the week before we arrived) and decorated in great style...lots of white, high ceilings, chandeliers, great views and purple and white orchids in each room.  They are doing their best to create a wholistic healing environment to go along with the conventional and natural/alternative/complementary treatments.  The staff mostly wear white and consist of the Dr., a couple nurses, a doctor of traditional chinese medicine (I see her too), and reception/administration staff.  Everyone goes out of their way to make us feel warmly welcomed.

Thanks for your comments and emails.  We feel supported and encouraged by everyone.

God bless,
Shawna

Touristy Day

Being Saturday, I had no treatments booked so we played tourists and explored the Innerstadt (city centre).  We took the U-bahn (subway) there then checked out the Museum Quarter, a huge city block of various museums, including a kids' museum.  Alexis is signed up for a construction workshop there this coming week.  We walked (Dad pushed me in a wheelchair) to the Hofberg Palace, Stephansdom (gothic cathedral for which the city is most well-known), Mozart's house, opera house and finished at the Town Hall, which is lit up beautifully at night with a gorgeous clock tower.  At the base of the town hall is set up a huge Christmas market with dozens of wooden stalls lit up with lights and decorations, various wares (toys, glass ornaments, leather, etc.), hot drinks, local food treats and hundreds of people.  It's hard to describe in words, but the whole scene put us instantly into the Christmas spirit.

The buildings here are all architectural masterpieces.  The streets are spotlessly clean and are filled with people walking, shopping and socializing.  We have felt safe everywhere we go, even after dark, which is a good thing since it gets dark by 4:30pm.

Some edible treats we've enjoyed so far have been:  maroni (roasted chestnuts), pancakes, Viennese coffee, gluewein (hot drinks served at the street markets), hot dogs (more gourmet than what we get at home), sachertorte (layered chocolate cake with a layer of jam), homemade caramels, schnitzel and viennese stockpot soup.

We're taking some pictures, but you'll have to wait until we get home and put them in an album to see them (yes, I still do that the old-fashioned way).  No big changes to the treatment regime this week except the addition of a traditional chinese medicine practitioner and some natural anti-inflammatories, mostly for pain control.  Next weekend we plan to take the train to Baden, a nearby spa town.  Will post more soon...

God bless,
Shawna

P.S.  Some folks have asked for our mailing address.  Thoughtful, but just mail things to our home address in Calgary and we'll enjoy opening them there.  We will be changing apartments partway through our stay, so would hate for something to get mis-directed in the mail.

Week #1 in Vienna

Well, we made it to Vienna with no hitches last Friday.  Our apartment is cozy for 5 of us, but in a convenient location (close to transit and more importantly, a mall!).  We are mostly over our jetlag and have done a bit of exploring, getting well-acquainted with the subway system.  I met Dr. Kleef on Monday and started daily treatment right away with hyperthermia (local and whole-body, vitamin C IV's, site-specific immunotherapy for bone and liver using Staph A and E Coli inactive bacterial vaccines, IV bisphosphonate, artesunate, and ionized oxygen...you may want to google each one of these with the word "cancer" to find out more info).  My blood and tumour sample have been sent to a lab in Germany to find out which kind of low-dose chemotherapy will likely have the biggest effect on killing my specific cancer cells.  The results should be available early next week.  Overall, I'm pleased to be taking advantage of so many of the treatments I read about in the Moss Report, and it's a nice treat to get them all in one place rather than trying to juggle many different practitioners.  I haven't felt any effects yet, but it's too soon to tell.

Alexis turned 9 on Tuesday!  She and Will picked out some Viennese cake along with pizza (of course!) to celebrate.  While I was at the clinic, they went to the zoo.  Unfortunately, most of the animals were tucked away for the winter, so they went to a fancy hotel lobby to do the daily routine of home-schooling, which is going well.

My Mom and Dad are enjoying long walks to explore different parts of the city, as well as trying out the local coffees and wines.  I ordered wiener schnitzel for lunch today...tasty but likely not high on the "anti-cancer" diet!  Will has gone out running a bit, which is how he likes to check out new places.  All in all, we're settling in.

Check back next week...God bless you all in the meantime,

Shawna

The saga continues

Many of you have received Shawna's email, but here is the update for those of you who have not.

Hello to all our Family and Friends,

As you all know, the past year and a half has been slightly crazy in our household.  In June 2010, I (Shawna) was diagnosed with  pelvic bone metastases (spreading of my breast cancer).  It was stable for about a year with hormonal and naturopathic therapies.  Then in July of this year, Will had a severe, unexpected stroke while working in Victoria.  After 2 months in hospital, he was discharged home in September and has been working hard on his rehabilitation.  The main limitation is his left (dominant) arm and hand; he can move all parts of it but it takes such effort that the movement is not yet functional.  His mobility, cognition and speech are nearly back to normal, and he has thankfully been allowed to resume driving this week.

We were looking forward to some peace and breathing space with regards to health, but I guess that's not in the cards for now.  Since the summer, I have had considerably more pain and it was discovered in September that my cancer has spread further (pelvis, spine, ribs, skull, lung and liver).  I have had at least 3 fractures in my pelvis and a new one in my neck.  Although I have received great care and appropriate treatment at the Tom Baker Cancer Centre in Calgary, the doctors tell me that they have no cure to offer and are treating for symptom control only.

A year ago, I thought that if it came to this point, I would feel peaceful enough to let nature take its course.  But after Will's miraculour recovery, I have a new resolve to "choose life".  So I spent hours on the internet and contacted tons of people with claims to "cure cancer".  The best source of information turned out to be a "Moss Report" which is a summary of the science behind most of the treatments provided for cancer, both conventional and complementary/alternative.  After reading every word on each of the 500 pages (exhausting but interesting!) and praying hourly for wisdom, I have decided to go to Vienna, Austria to see a medical doctor (Dr. Kleef) who uses an integrative approach to cancer treatment.  You can google the following treatments if you're interested in what I may be receiving:  hyperthermia, mistletoe, artusenate, homeopathy, dendritic cell and autologous vaccines and other forms of immunotherapy such as Site Specific Immunotherapy and Coley's Toxins.

Our flight leaves tonight.  Will, Alexis, my Mom, Dad and I will be gone for 7 weeks (back January 5).  We are excited and hopeful.  Even Alexis has been really supportive and courageous, choosing to look forward to this adventure rather than focussing on what she'll miss at home.  While we're gone, we'll post weekly updates on a new blog:   

http://www.shawnapynten.blogspot.com/

You can stay in touch with us by commenting on the blog, or by email.  Please only call my cell if there's an emergency (my cell phone bill from my 2 weeks in Victoria was $700!!  I can't imagine what it would be for 2 months in Europe!).

Also, we just had some amazing family pictures done in Canmore by Lanny and Erika (TwoMannTent Photography) and I'll include their blog address for a sampling of our photos:

http://www.twomanntent.com/blog

While we're gone, we'd so appreciate your prayers for safe travels, fun times and healing for both me and Will.  Although our journey has been a struggle, we have never, not for one moment, felt unsupported by all of you.

Luke 1:37

For with God nothing will be impossible.