Home from the cruise

This photo was taken of Gord and I by our lovely neighbours (Vince and Anita) in the next door stateroom on our cruise. The photo is of Gord and I on our balcony, we were waiting to go ashore on St. Thomas, US Virgin Islands.

We had a great time on our cruise, despite that fact that we had a few days of poor weather and also a couple of very rough sea days.... even so, the ship was beautiful, the islands too, it was relaxing and re-energizing all at once. We visited Puerto Rico, Antigua, St. Thomas and Bahamas..... turns out we LOVE cruising as a vacation and I only wish we had another one booked to look forward to!

I am feeling very well, I had no real restrictions (apart from getting extra sleep), and I enjoyed the entire vacation.

Medically, a bit of news... I finally have a Saskatchewan oncologist, and will see him January 19. The CT scans were unfortunately dissappointing, as I was hoping for further shrinkage of the tumors, but this did not happen. However, there are no new spots, and it is hard to tell if I am stable, based on the last CT scan. So, the plan is to rescan in 8-12 weeks (I chose 8) and that will tell us what we need to do next. So, I am still on "chemo-vacation" over Christmas, and I am VERY grateful for that.

Cheers to everyone...... Joanne

New York, New York

This photo is of Gord and me on the "Lady Liberty" harbour cruise, just as it passed in front of the Statue of Liberty.

We had a fantastic time in NYC.... more details to follow. We were there for two nights and one full day (two partial days) and we made the most of it. We toured all over Manhattan, saw "Wicked" and the "Radio City Music Hall Christmas Spectacular". The city is amazing anyway, but to see all of the Christmas decorations was really a splendid experience.

My appointment at Memorial Sloan Kettering was also really good. It was a very thorough case review and they were very compassionate, honest and very thorough. I left convinced that I have been on good treatment paths in every instance along my journey with breast cancer. And, I also got some good advice for next steps as I continue to manage the disease. I already knew that I have an aggressive cancer "triple negative" for hormone and oncogene receptors, and so the only tx options are chemo. However, they reminded me that there are many chemo options and we discussed these (as I have with my oncologist here in Canada). And reviewed any possible experimental options (none where I live at the moment, unfortunately)

Thanks to my cousin Sean, who helped me get connected with one of the most respected breast oncologists in the USA... I am very grateful to have had the opportunity, even to meet and discuss my case with this well known, and well published physician.

I had a CT scan on Monday, just before leaving for New York. The NY docs had a quick look at the summary, but it needs interpretation by my oncologist, will get to that after next week... because.......

Tomorrow, Gord and I leave on the vacation we had previously planned - a Carribean cruise. So will provide another update when we return.

Cheers all...........

Away from email (and computer) for awhile...

I figured out how to log onto my blog from my mom's computer!

We are all fine, but currently out of our house, because we had a sewer back-up earlier this week, and we cannot go back until the basement is cleaned, sanitized, and the walls/carpets are repaired. Oh, yeah, and the driveway is dug up.

We had our driveway repaired last week, and it appears to have damaged a sewer line...... hence the back up...... it has been quite a hectic couple of days and not real pleasant! It's a big mess, and anything that came in contact with the "water" is contaminated and must be cleaned or replaced.... At any rate, I am grateful that our insurance covers the interior of the house and it is being professional cleaned by the disaster cleaners.... we will have to fix the driveway ourselves, that's just the way the insurance works. A very boring way to spend money, all in all.

We are staying at my mom and dad's and I can't access my email remotely so until I get that resolved.... I won't be reading or sending email! So if you don't hear from me, that is why. Thanks for all the comments ... since I have no email I'll sent out blanket greetings and "thank yous" Judy - good luck with your move....... Patti......... 35 minutes???? unreal......... Anna... Steph's email is burried in my old computer account, but we only have a day in NYC anyway, so I guess we'll miss that chance..... Loretta, I hope you had a great time yourself in NYC...... Pat, Gwen, Kelly, Darryl, thanks for checking in..... and hello to everyone else....

Anyway, apart from disturbing the peace at my mom's house, we are all coping fine...... just another of life's interesting twists and turns....

Joanne

No news is good news!

Nothing new!

My November 1/06 appointment with the oncologist was unremarkable..... physical exam was all fine, although it will be the scans later this month that will actually show what is going on.... still.... my lungs sound fine, abdomen, etc........ I am feeling quite fine, so I am certainly hoping that the disease is stable. I can't say I am confident of that, but certainly I am very hopeful!

And, I am feeling better and stronger, so the break from chemo is seeming like a very good thing.... I even have little hairs growing in all over my head, in between all the thinned out strands.... it might get looking a little freaky, but it is great to have hair! And great to not have it falling out all over the place....

I am scrambling to attend to the paperwork involved in the "consult" at Memorial Sloan Kettering, currently booked for November 30, and that will be an interesting experience as well. Gord and I will spend two nights in New York City and that will certainly be a thrill.

That's it for now....

Joanne.........Go Riders Go........

Chemo Vacation Begins Today !!!

Well, today is the day I would usually go back for another treatment. So the chemo vacation officially begins today.


I am still quite fatigued, but it is managable, and will surely improve gradually! I have been a little worried about stopping the chemo, especially since it was working! However, the "break" will be good for me physically and I am working through being "bothered" by the uncertainty.

"The word which God has written in the brow of every person is hope" - Victor Hugo

"It is hope which makes the shipwrecked sailor strike out with his arms in the midst of the sea, though no land is in sight" - Ovid

So, it is onward-ho, and we keep moving forward! Upcoming medical events: November 1 (check up, blood work). November 27 (CT scan). November 30 (tentative) second opinion review at Memorial Sloan Kettering, NYC.

Joanne

Blogger problems?

I'm republishing with a new entry to see if that solves the problem of people not being able to view this site....

All is fine with us this week... I am feeling much better than last week, and I can expect continued recovery for the next little while. My 45th birthday is today, mom and I had a lovely lunch at "The Willow" restaurant, which overlooks Wascana Lake in Regina and uses local and prairie ingredients. Very, very good.

Thanksgiving

Sunday, October 8, 2006......... the Schweitzers enjoyed being together for Thanksgiving, and also a great meal at Grandma's.

Now, as I write, I'm just recovering from my "last" chemo treatment.... I'm finding it a bit slow going, the fatigue and overall crumminess is lingering.... HOWEVER.... I will be on "vacation" from chemo for the next while. No way to know how long - that will depend on the scans. My oncologist hopes for stability and thinks it is reasonable to think that we might get 3-6 months with no disease progression. Or longer, or less.........cancer is unpredictable, as I know first hand!

We'll see..........but it sure will be nice to have a break. My next appointment is November 1, and I will be having scans sometime in November/December to check out where things are at.

Thanks to everyone who keeps checking my blog and saying "Hello".....

"This time, like all times, is a very good time, if we but know what to do with it" - Ralph Waldo Emerson

I'm not sure if I know exactly what to do with my chemo vacation time, but I will be enjoying some 'normal' everyday life time, I'll be reading and watching "The View" and "Survivor" and "Amazing Race". I will be having the odd glass of red wine and plenty of dark chocolate. I'll be having coffee and visiting with my parents (down the street!). Gord and I are booked to go on a cruise (eastern Carribean) first week of December... and we are taking the kids to Phoenix in February. I'm planning to do more baking this holiday season, and looking forward to Christmas, when my brother and sister and families will be here.... all in all, very ordinary and wonderful times!

Cheers to all.... Joanne

A new twist for treatment

Well........... this seems to be good news............ I have just finished my last Cisplatin treatment (I will not have any more of that drug due to possbile toxicities). I had thought that the Gemzar (Gemcitibane) would continue for a while longer, to ensure stability or further fight back the disease.

My oncologist now feels that the August scan results were good enough to warrant a complete "vacation" from chemo for awhile. Her plan is to follow me with scans and keep a close eye on how things are.... she seems confident that we can get several months of "chemo free" time without compromising my overall state, just be watching whatever is going on right now.... of course, if things go downhill.... then it will be a swift return to another set of drugs....

Until I see the next scan, I think I'm going to be a bit nervous about this turn of events, however, she has great faith in this being the correct thing to do and I have a high level of faith in her... I may do a bit of checking around (this being my nature), possibly a second opinion as well........ For now though, once I finish the rest of this "set" it might be time to enjoy myself for awhile..... since my quality of life is good, it will be time to regenerate my reserves, regain my strength and do a bit of travelling. Note that we are not at a disease free state, so it is a "given" that a return to chemo will be inevitable..... she is hoping for 3-6 months of a break.

That's the latest news and while it has me nervous, it also makes good sense...... treating Stage IV breast cancer as a chronic disease is a delicate dance of finding chemo drugs that will work for me and keeping your body as healthy as possible to tolerate the onslaught.

It's time for me to pull out a dose of hope again.....

Hope is patience with the lamp lit..........Tertullian

or:

A handful of patience is worth more than a bushel of brains..... Dutch proverb

Feeling better

Well, it's now my official "week off" and I guess I am feeling better and stronger than I was last week... it's very easy to lose perspective about these things. I thought I felt fine then, but I d feel better now !!!! I do get "winded" and short of breath relatively easily, but if I slow down, then I'm fine..... I think we will have to do something about my low hemoglobin (anemia) fairly soon though as it has been an issue for awhile. I don't really want a blood transfusion, but I am getting used to the idea!

I'm keeping a fairly low profile, doing lots of resting, and reading, a few social outings (Yippeeeee), bit of shopping, stuff most of the world can fit into a day but I kind of spread out over several !!!

One bit of "non-news" is that I will continue having treatments in Winnipeg for the next several weeks.... there have been some delays in getting things organized to have my cancer care here in Saskatchewan..... so that is also what I will be focusing on.... the travel back and forth.....

At any rate, we are all doing fine, Brian is adjusting to Regina, Craig & Michelle to living on their own/University life...and to living on Kraft dinner...... and Gord to his new job (which he really likes). For the moment, all is calm !!!

Blood counts too low for chemo today

Round 5, Day 15....... and my blood counts were all low, too low to have my treatment today.... it is weird to be disappointed to NOT have chemotherapy, but missing a treatment is always a worry.

Anyway..... I've had a little visit with Michelle and Craig here in Winnipeg and fly back to Regina Wednesday. The extra week 'off' treatment will help to boost up all my counts and I guess I'll rest up and hope that helps.

Onward......

Joanne's Stingray Adventure....

Given the "crocodile hunter's" unfortunate demise, it occured to me that my own adventure factor just upped a notch........

Yes, I was in the ocean on a sandbar with hundreds of Stingrays. They are very fast little devils, they feel like you would imagine a dolphin would feel, quite smooth actually...... but their tail bit, (which they flick around as they race around for food) feels like velcro when it smacks you........

AND... it was my idea ....... Grand Cayman Islands, 2004..... The tour operators take a bunch of gullible tourists out to a sandbar, dump you out into the ocean, bring out a pail of squid, and BOOM...... all of a sudden the stingrays are all over the place, racing around, and bashing into your legs.......

Brave (????) people feed them, hold them up, take photos, etc.... Sadly, the truth of my adventurous nature rises to the top and the photo here pretty well shows what I thought of the whole thing.......I pretty much stood there and screamed every time one bashed into me, and then got the heck back into the boat and watched the festivities from a safe and reasonable distance....

The "Stingray Beer" (brewed in Grand Cayman) on the other hand, was very enjoyable!!!

Finish Line at Vancouver Weekend

I'm not sure why this photo is teeny tiny, but maybe you can see the Vancouver walkers crossing the finish line. We are amazed and proud of them.

As for me: It's Day 9, of Cycle 5, I just returned from Winnipeg where I had Day 1 and Day 8 of chemo..... My bloodwork remains good enough, and although i certainly am getting increasingly fatigued, I am doing well.

First week(s) of school......Brian is settling in at Leboldus in Regina..... Craig has been at Engineering Orientation, learning to sign loudly and irritate/offend any non-engineer on campus.... Michelle is very, very busy with her sorority chapter, and all their classes begin Thursday... New beginnings for all.

CT scan shows good news!

Hello everyone...

I am so grateful and pleased to be able to report good news......

I received the results of the CT yesterday and it was GOOD news... the chemo is working! Overall, there was a significant improvement in all of the cancer nodules and no new areas of involvement!!

The largest lung nodule was 1.3 cm and is now 6 mm....... the number of spots is fewer, some can no longer be seen....... The largest mediastinal node was 2.5 cm and is now 1.2 cm. My chest wall area, liver, abdomen and pleural area are all clear... no solid masses and no unwanted fluid anywhere that can be detected by CT.

So..... more of the same treatment....... since it is working, I get more.... I had Cisplatin + Gemzar today and it is tough, but it is certainly easier to tolerate knowing it is working ! At the moment, I feel semi-tough myself, I'm not big on the battle analogies with cancer, but I feel like bit of a warrior myself today..... Even my blood counts have improved to the point that we did not have to consider the blood transfusion that was on the table two weeks ago. Glory be.... They (blood counts) seem to have bounced back for no good reason, but overall it is a also a good sign that for now I am tolerating this regime... it will likely come to some intervention, especially with the Hemoglobin, but for now I am holding my own...

I'm in Winnipeg having my treatment, so I miss Brian's first day of school tomorrow, a big day for him.... Good luck Brian, he is a real trooper, very brave and he has maintained such a positive attitude about moving that we are just amazed with him..... He starts school - Grade 10 at Dr. Martin Leboldus Catholic High School, in Regina, tomorrow....

So, I am a lucky girl, and I feel very grateful for this good response, not everyone is so fortunate, and to a certain extent, finding a chemo that works is a crap-shoot..... We take every bit of progress and good news with a huge amount of gratitude... and we thank you all for the continued support of our family and friends, it really does make a difference in our lives...

Joanne and family

Some of the "Pink" Crew: Cheering and Fundraising...

This photo is from two years ago, but it does show some of our "supporters" from the walk... This year, in ADDITION to exceeding their donations for the walk, my sister and brother's families held a garage sale, with proceeds to the Weekend to End Breast Cancer. They sold toys, kids items and pink lemonade and pink cookies and raised $400 to donate.

Weekend to End Breast Cancer

This is a photo from two years ago, when (from left) my dad, my sister, brother and Michelle participated in the "Weekend to End Breast Cancer" in Vancouver.

I find it kind of hard to express how I feel about people who will walk 60 km in a weekend for any cause, and then most especially as it relates directly to me and to breast cancer. I find it very humbling and overwhelming.

At any rate, I am proud to know so many people who are again doing the walk this year. Michelle volunteered as 'crew' for the Winnipeg walk..... my sister, brother, sister-in-law and my niece Heather are all walking in Vancouver this weekend. Many friends are also walking in Calgary, Edmonton and Toronto, as is my cousin Erin (Toronto).

Even though the reality of "ending" breast cancer is many, many years away, and may seem frustrating....I am a living someone who is benefitting from research. The chemotherapy that I am now on would not have been available to me, even ten years ago, and is the result of newer research, as are the newer anti-nausea drugs and also newer chemos that may still be in line for me next.... My life is directly impacted by research advances, even if they don't seem "good enough", I'm still exceptionally grateful for it, and to everyone who contributes to this research in one way or another....

I send my congratulations and heartfelt thanks to everyone involved.

Hello Joanne's Blog "fans" - sorry for lack of communication

We've been busy at the new house and it is going very well..... my mom has been working tirelessly, and my great friend, Anne, also spent a long day of hard labour with the unpacking......... and boy has that made a difference.... when you are unpacking alone it seems so overwhelming, you just want to sit and cry more than once during a day.... but with "outside" help it just makes a world of difference.....

A few more days should have the whole house done, but we already are happily living in the two main levels, almost everything is "good to go".... I am headed back to Winnipeg - another treatment on Tuesday and I have the "big scan" (CT rescan) on Thursday.

We do not have internet until later this week, we will have new email addresses at that time. I'll figure out how to create a link to the new addresses once I am back at my computer.....

Thank you everyone for leaving your comments, it is very exciting for me!!!

Cheers - Joanne

Big Week Ahead..... treatment and moving!

Poor Heidi (our Miniature Schnauzer) is not happy with all the boxes and people going in and out... she will be going to her friends (groomer's) house this week so she will not be driven nuts by the movers... and vice versa.......


Well, it's a big week.

I have the "big" treatment Tuesday - Cisplatin and Gemzar, usually puts me out of commission for almost the full week......... and we have the "big" move ........ the movers arrive to pack Wednesday/Thursday and loading is Friday. Cleaning and final details Saturday/Sunday. I'll be lounging at the Holiday Inn while Gord, my mom and Brian man the fort - the movers do all the work, but it still takes organization and there are always oddball things that crop up.

I have no idea what the internet situation will be..........uh .......... and I forgot to sign us up for internet in Regina, so I don't have my our new email address.... stay tuned though, I will post updates...

The "little" move (Craig and Michelle to the apartment) is mostly complete now...... they are adjusting to their new life! Our Winnipeg phone number will be transferring to their apartment August 4, so that number remains in effect.... we can be reached there or by our cell phones...

Here is my little bit of inspiration for today........... I have no idea who this guy was, but this quote struck me as we embark on these major changes in our lives this summer:

"Hope is not the conviction that something will turn out well, but the certainty that something makes sense, regardless of how it turns out"..... Vaclav Havel

"Week Off" and more news from Shanghai and Hangzhou..........

This is the week in the month that is totally free from treatments! Yippeeeeeee.... I'm feeling fine, fatigue an issue, but that is pretty normal, especially considering that my blood counts have been on the low side....

So....... I have a free week.........

Our movers arrive to do the packing beginning August 2.........it is lousy timing for me as I have a "big" treatment August 1, but mom will be her and I will move to a hotel room for the duration of packing, so it should work out better than it seems...

Another update from Mom..... They are doing GREAT, sounds like it really has been the trip of a lifetime... here's a little excert:

Greetings from rainy Hangzhou! We arrived by bus this morning and it has been raining all day, but that didn't stop us from taking a one-hour walk at the West Lake. Beautiful scenery, and although it was pouring, it was still hot. Yesterday in Shanghai was another amazing day. In the morning we toured Old Shanghai and went to a market created from a former Temple. Lunch at McDonald's before the afternoon concert. The concert hall really had to be seen to believe. The kids gave a great concert in an acoustically-perfect theatre. Only a couple of years old. It was well received and attended by a Canadian Trade Ambassador who went backstage afterwards to greet them.

News from the China travellers! Very exciting!

Hi all... I think I've mentioned that my mom and dad are in China travelling with my sister's family. My niece Heather (the one who will be doing the 60k Weekend to end Breast Cancer later this summer) is in the BC Girl's choir and her choir, as well as the BC Boy's choir are "touring" China. Kelly (my sister) is a chaperone, and my mom and dad, Gary and Holly and Laurel are in accompanying tour.

Well, my mom found a computer, worked her way throught the fact that it was in a Chinese language! They are having a GREAT time and here is mom's email, which she gave permission for me to share here.... she will not be able to email her usual gang due to time, etc...

"We had great flights over. Ten hours to Tokyo and after a couple of hours layover, 4 hours to Beijing. Very hot, humid, sticky and hazy. Probably pollution and heat combination. We've had two very exciting days. The hotel is wonderful, fully modern, with all the amenities--including this Business Center. Saw the Forbidden City, Tian'anmen Square, Temple of Heaven, shopped at a 7-storey market (Holly was a whiz at bargaining), went to a silk market, and had a pedicab (rickshaw) ride through one of the old style "hutongs" (narrow alleys and old style housing). It was fantastic. Today we are off to the Great Wall.The food is incredible! They are taking us to great restaurants and we will all be gaining weight! Breakfast here at the hotel includes eggs, bacon, toast, pasta, salads, fruit, as well as all the Chinese menu items.

The choir's performance last night was awesome! What an incredible bunch of talented kids. The theatre was beautiful and the concert was well-received by the audience, especially when they sang a song in Chinese. Apparently the Chinese VicePremier was there. The people took lots of pictures of them after the show. I forgot to mention our visit to the Canadian Embassy, which was a great experience also. Had a presentation on video, a talk by the Ambassador, the choirs sang and then there was a reception for them.We are being treated royally.

Also, Laurel is a hit wherever we go. I think that while the Chinese people see Caucasian adults, they don't see too many children, so people are coming up to her and touching her cheeks. We are giving out Canadian pins, and when Laurel (or the other girls) give one to a child, they will reciprocate with a gift-- candy, a flag, or coin."

Round 3 Day 11

Once again, the first week is the toughest, then it gets considerably easier..... During this round, I've had a 10% dose reduction, in the hopes that my blood counts will not drop so dangerously far down again. Supposedly, a dose reduction is common with this regime, and it is not supposed to decrease the efficacy of the drug.... which makes me wonder if this is true, why not just start out on the lower dose? But that is the sort of question that really has no good answer, much of the drug and dose business being a bit of a crap-shoot to begin with.........

Some may remember that I am to be rescanned sometime around now to see how these drugs are working......... I don't have a date for the scan yet, but now it is supposed to be in mid-August. Hopefully there will be a booked date soon. One thing for sure, my cough is completely gone which is either a good sign (although they didnt' really think there was enough cancer in me to be causing the cough in the first place).... OR.... it is a "at least it is not a BAD sign".....

That's it for now.... I'm a little draggy these days (normal course and due to the low blood counts, less oxygen capacity with fewer living blood cells, etc.... ) so I rest quite a bit (an activity I am not a fan of); but all in all, I'm doing pretty good.

Cheers and thanks to all you blogger responders......