"What can we do to help? "

It has most certainly been the most stressful, trying month of my life. And a great big thank you to all of you wonderful supporters who have been asking "What can I do?". For the most part you have been given a non-answer. We were so caught up in trying to get through each day, that I, for my myself, could not concentrate or imagine what another day might be like, and what might help.

Just so you know, I am completely grateful for all the support we have received; we need no other "thing". For those that wish, please know that everything you have done is "good enough"... we feel blessed and lucky and loved.

However, we keep being asked, So.......... I thought I'd give a little status update.

Gord and the kids have gone to a family wedding in California. And, in case that seems strange or selfish to you, please be generous in your thoughts about Gord and the kids. They are under tremendous stress, and it was my request that they go, enjoy and learn to be a strong family unit in a happy setting, even when times are difficult, while I can still enjoy from my comfortable bed.

My wonderful mother is for all intents and purposes my main caretaker. She is now with me virtually 24/7 and she helps me with all the day to day things I can't manage as well as being a huge emotional support that I just lean on shamelessly. My dad keeps the homefires burning, and also runs all manner of errands, and he sits with me when my mom is not around. That is going well, and at the moment, my mother does not want help for herself or anyone. Not just yet anyway.

At the moment, the truth is, that I am not physically or emotionally able for real visiting. The best I can offer anyone who wants to come to Regina anyway, is short (i.e. 30 minutes) of visiting me lying in a bed. And we are not in any way able extend the hospitality that we orinarily enjoy sharing with you, our friends and family. We cannot have anyone staying at our home. I hope this improves, but right now, it is the truth.

Anyway, thanks to my Aunt Lorna Mae who had this excellent suggestion: If you want to do something for me, please go and donate some blood. I had 2 units given to me this past hospitalization and they have helped me to feel so much better. I expect I will need it again. If you would like to do something concrete, please consider this. It will help me and many other people. And since, at this exact time, there is nothing physical that I need, it would be an ideal way to help in this way.

Especially all you B+ types (that is me)...... a rarer kind (just like me)............

Thanks friends, for considering this unique way to show support of me.

At home again

I am back at home again, and hopefully it "sticks".

After my kudos to our health care system, I can safely give my one current big beef, which is the entire ER system. Doesn't matter where I live or which one I go to, they are all a big nightmare, and at all costs I would like to stay out of them. Hopefully my temperature cooperates.

I will write more as I am able. Right now my fatigue level is high, my pain is managed, and my breathing is much better managed as well. I am quite comfortable, but I am also emotional and overwhelmed, and I still feel like I don't know what will happen next.

My next chemo treatment is this Thursday and so I will be gathering my emotional and physical resources to get through that. Right now I am not very capable of doing much by way of visiting or talking to people. I hope that I find that that energy returns to me, but in the meantime, I'd like to express my appreciation for your continued warm and loving responses here on this blog. I will appreciate it if you continue to communicate in that way.

For a more private message, my email address is jschweitzer@sasktel.net. I am not at the computer regularly, but will do my best to keep up.

Joanne Update...

Hello,

Gord is back in Winnipeg today, helping Craig move out of his apartment and return back to Regina for the summer. In his place, Joanne asked me to post a message on her blog. For those of you that don’t know me, I am Joanne’s brother, Darryl.

Joanne is still in the hospital but I am glad to report that she is stable and improving. She has had a tough few days but her blood counts are improving, her pain is being managed and her fever is under control. Assuming that she remains stable, she will likely be able to return home in the next few days.

Her spirit and determination are as remarkable as ever!

She says the food is fine and she is kept well stocked with dark chocolate, not to mention her daily venti, extra hot, no foam, 2% latte.

On behalf of her family, thanks to all of you for your ongoing support.

Hacker Darryl

Joanne moved to hospital

June 25, 2007

Hi I've hacked into this blog to provide an update on Joanne's condition.

Today Joanne was admitted to the oncology ward at Pasqua Hospital. She is having some problems with intermittent fever and to be safe she has been admitted and is on I.V. antibiotics.

She is still in pain as the plural effusion has increased again but they are medicating the pain. She is resting comfortably in a private room but visiting privileges are limited.

Joanne's hemoglobin is very low so she is getting a blood transfusion either later today or tomorrow.

For now we will both be away from the house during the day and at the hospital in the evening so we won't be answering the phone. Please correspond with us using this blog.

Hacker Gord.

A week of changes can change your life!

This is my new view, and I am lucky that I have such a beautiful sunroom to have such a good view in!

Well, I will try to keep this brief, but it has been a very incredible sort of week. Surreal, really,

So, at last post I had a pleural effusion drained and was recovering.

Well, something went sour with the pleural effusion drainage and a small part of my right lung collapsed. The drainage was malignant, which is just means that there is now an easy vechicle fo the spread of cancer elsewhere as fluid tends to move around. I still have fluid on my lungs but the prioirity was to do chemo immediately to try to improve the situation in the lungs.

Due to the pain of the lung collapse, I have been started on a morphine program. And due to the shortness of breath increasing and becoming worse (lung collaspse), I am now on Oxygen all the time and at home.

Today a hospital bed arrived, so I can sleep in a better position for my lungs. Also, we received a shower chair and a wheelchair. Oh and Homecare is providing me with anything we need.

I have suddenly moved from being independent to being not terrible mobile. And I am supposed to view this reduced mobility as saving my energy for things I really want to do. So, that's the view I am trying to take.

My fellow cruisers - Karen and Kelly, came here this week, and they are helping to get all this equipment settled and to make it as nice as possible for me. Mom has been here 24/7 since Gord is out of town at a course. I feel very supported as I travel this challenging path.

This has all been very unexpected and so it is actually difficult to comment on with any form of wisdom. We just keep getting through each day and are not looking too far ahead. My friend

Janice is bringing Michelle home for a visit next week, and Gord will get Craig after exams, it will be quite an adjustment for them to see me too.

THE one reflection I do have this week is the excellent care we have received from our much maligned "system". We have been treated with dignity and respect and with kindness... and SPEED.... I cannot imagine getting better service than we have had this week. It has been unbelievable and true cause for thanks.

Best wishes to all..... Joanne

"Progression" and "Pleural Effusion"... two bad news words for a gal with Stage IV cancer.

As I mentioned last week, I was not expecting great news from my CT scan based on the fact that I have been having increased symptoms. The only bit of good (?) news this week is that I was correct!

In fact, my CT scan showed some new spots of cancer in my lungs. Although the drug was holding the existing spots at bay, and no new areas have been affected, this is still NOT GOOD ENOUGH, and a treatment change is in order.

I will begin a new regime tomorrow, Myocet and Cyclophosphmaide. Myocet is an encaspulated version of Adriamycin, a very powerful drug I had way back in 2001. It is a tough chemo, but the encaspulated version is designed to stay in the body longer, and seek out cancer cells, leaving fewer 'normal" cells damaged. We will see. I expect a bit of a tough ride.

Pleural Effusion: fluid has now built up in the pleural cavity (which surrounds the lungs). This is not uncommon with advanced cancer in the lungs. Yesterday I had quite a bit of that fluid drained in a procedure called "thoracentesis". Unfortunately, my procedure did not go as planned, and they were unable to remove all of the fluid, which means I will likely have to have another one sometime soon.

So, it was quite a long, sad day yesterday. We have cancelled our mother daughter cruise which we were to take this weekend, and I will have a DIFFERENT kind of weekend ahead.

SO, that is the update, I wish I had better news to report. As always, we draw strength from the love, good wishes and prayers of our family and friends. The love and kindness shown to us really does help lift us back to our feet so that we can keep moving forward. Thanks you to all our wonderful supportive family and friends.

Joanne

A great photo from Montreal

Isn't this a great photo of my cousins and aunt? Peggy is the beautiful bride.

Lovely Montreal

I just returned from my cousin Peggy and Johnny's wedding in Montreal. And I am ashamed to say I do not have one picture to post, although I did have my handy and compact camera with me. Thank you to my brother Darryl who sent this amazing photo of one of the beautiful stained glass windows in the lovely Montreal Church where my cousin was married.

At any rate, it was a beautiful event, a beautiful couple, and I and my family rejoice with this latest marriage. It was especially gratifying for me to be able physically to attend the event. Although I missed some major action, belly dancing included, I feel lucky to have been present to share in the day and to see so many of my amazing family members.

For me, it is action week.... tomorrow (Wednesday) I have the CT scan that will determine how I am actually doing. Given my own assessment of my physical state, I am pretty sure that the best I can hope for will be a stable situation. I fear I am too symptomatic right now to enjoy any reduction in disease. However, the CT will tell the story, and I meet with my oncologist Monday to determine next steps.....

The reduced dosage of Xeloda has provided relief from pain in my feet, although the skin is cracked and peeling, I think it is improving. So that is a good thing! And, today was my last day of Cycle 6 of the drug, so the next week "off" chemo is a welcome thing too.

As the saying goes, I am "hanging in there".......

Cheers Joanne

ALthough I look bored and morose........

I actually was quite excited about this beautiful flowering plum tree in our front yard. It's exciting for us to be in a more developed yard, I am enjoying the squirrels and birds who also share our yard. However, we have considerable work to do, removing an overgrown elm tree, lifting up the deck, etc....etc..

Right now the major project is the driveway which does NOT look like the photo above...... it has been completely removed and the entire thing is being redone. Thanks to my dad (Jim Condon) he has lined up reliable contractors and is the chief superintendent of the project. If not for my dad we'd probably be living with the crappy temporary stuff for longer than we should, so we are VERY grateful. Our house will look stunning with it's new concrete!

Michelle was home this weekend and we had a quiet and lovely time.

For me, same old, same old.... Round 6 of Xeloda, the side effects do accumulate so I have more challenges than before. I also have a nasty cough which either lingers from my viral infection, or is the cancer raising it's ugly head again. I honestly cannot tell which it is, but my functional ability is quite limited at the moment.

However, as I may have mentioned, I live a life filled with love, and I have many loving family and friends who make it possible for me to enjoy every day as normally as possible. It makes me realize just how lucky I am, although I realize that is going to sound like a ridiculous idea, given my overall circumstances, but it is honestly what I feel.

So cheers to all and I hope you are enjoying spring, my favourite season! Joanne

Me in my sunroom

This is pretty much where I hang out these days.... we have a lovely sunroom, and recently added "real" (translated = comfortable) furniture to it, and it is pleasant and lovely. Ideal spot for reading or my current activity, needlework. I am still recovering from that darn virus and my activity level is very low. Staying in one spot quietly, helps me to easy breathing, so, the sunroom is a real "gift".

I see my doctor on Tuesday (May 22), so I will add the results after I have them. I expect no changes. I am not better or worse, so my guess is that I continue to be "stable".... but I will be scanned sometime soon to see what is really going on.

Medical Update: things appear stable. I continue on Xeloda at a reduced dosage, since I have developed Hand-Foot Syndrome, one of the common side effects of the drug. Next CT scan will be in about 3 weeks.

J

Woo Hoooooooooooo the "girls" are cruising

This was me within half an hour of boarding our Carribean cruise last December. And I am so lucky because I am going again in June!

Kelly and I got set on going on a "scrapbooking cruise" after we created Dad's birthday book, we got 'bitten' by the croppin' bug..... at any rate, we were all set to do a scrapbook cruise - with Mom, Karen Kelly and Joanne...... Sails from L.A. port and just 3 nights.... includes a day stop at Ensenata and cruising the rest of the time. Yippeee....

(OK, small detour, we couldn't make it on the scrapbooking cruise, but we are cruising anyway! We got a fantastic bargain on the fare, airfare, etc.... and we are GOOD TO GO.... Kelly is now the scrapbooking instructor, I am the cruise director, mom is the ultimate decision maker and queen poo-bah.... Karen will make sure we don't get arrested.... uh, Karen, of note in photo above, no glass bottles in the pool, could you keep control of your group, please!!!!

My health has been a bit of a disappointment, no change from last Monday. Side effects from Xeloda are accumulating, making some challenges.....

Anyway........ Get ready to cruise wity us!

Spring in Regina

The boys are ready for the football season!

Well, I am recovering from the viral infection although the cold part seems to be hanging on, which is yucky, but managable.

I saw my oncologist today, and things appear stable, and I continue with the same treatment, same dosage of Xeloda. I will be rescanned later in May to see if it is still working to keep me stable.

Cheers to all, and thanks for looking in on me!

A New Week Ahead

Well it was a tough week for me. A nasty viral infection certainly took hold and had me out for the count for several days. Likely it doesn't help that I continue to take my chemo, which also increases fatigue and general crapitis feeling.

I ended up on two antibiotics and the blasted fever continued on into Friday, causing me much angst, phone calls to cancer clinic, and some negotiating to save me an even more dreaded trip back to ER..... I should have gone Friday night, but in reality I could not face the Friday night crowd, so I packed up ready to go, then I stayed home, watched my temp, monitored myself and decided every hour what to do... and then near morning, the temperature just improved! Spent the rest of the weekend in bed, and finally today, I think I am on the mend!

So, this week is looking up! It's a new week, hence the spring like floral photo......And the good news? Well, despite tremendous amounts of hacking, coughing and nose blowing, I was able to breath relatively well.... So I think that is a good sign of things to come, at least that is my determination.

Cheers to all for a peaceful, virus free week. Wash your hands like maniacs, this last one hit all of us Schweitzers despite our OCD-like behaviors around the hand-washing.

Joanne

Detour - another blasted trip to ER

Well, a very slight setback. I developed a fever the other night, and when you are on chemo, a fever is never ignored.

The above picture, of course, is generous, the actual number of medical personnel I came into contact with after 6 hours was actually very scanty and they weren't smiling either. Actually, the lab and x-ray techs were very cheerful, the rest, not so.

So.... a lousy night was spent in ER, while they checked me up and down for infection, x-rays, blood tests, and blood cultures, urine tests, etc.... All my tests came back perfectly good, but since I obviously have picked up something, I am on anti-biotics as prevention. ER is a terrible place for cancer patients, because you are not exactly an emergency, you are a "Maybe" emergency, and immune suppressed at that, so in danger of picking up all the crap floating around the emergency room. But that is the system and so that is how it goes!

We've all had a nasty cold and cough.... and the combination of cough with my lung problems has been particularly nasty. But, hopefully it will improve soon, and I am thankful it was nothing serious. The coughing is interupting my sleep tonight (that's why I'm up and on here!), but otherwise I "feel" very well.

My good friend Janice is here visiting me fromWinnipeg, what a treat....

And, Mom and Dad arrive home from the USA tomorrow! It will be great to see them back at

"home"...

Monday Update

Seems like Monday might be a good day to try and update my blog and my "book of the week" (see link to the right of the page). I'll do my best..... that way you don't have to keep checking in....

So, on this Monday, well...... everyone in my house has been sick with quite a bad cold & cough.... Michelle and Craig too..... I seem to be spared the worst of it, but I do have a sore throat and a bit of congestion and extra cough (which sucks since that is also a symptom of my lung status, it plays with my mind).

Gord recovered quite well, but Brian has actually stayed home from school even after Easter Break, and is feeling really tough. So we are mostly laying low, watching movies and keeping it low key.

The U of M pair are in the midst of finals... I'm looking forward to seeing them when they are done!

That's it for now... Joanne

Scan results: Stable

Well, that's the word: no change since the last scan. Although it seems odd, this is a "good" news scenario, since at the very least, the Xeloda is working to keep the cancer from growing. Of course, "better" news would be for all the cancer to disappear, but that is a bit of a reach for just 3 cycles of a gentler chemo. I do still have some symptoms (cough, shortness of breath) so this result is more or less what I expected, and I am very grateful that the disease has been halted, at least for the moment. AND.. everything else (liver, bone etc...) remains clean.

So, my oncologist (Dr. Chal Chal) is very happy with both the results and with my improved functioning. And I am doing better on a daily basis, just doing the ordinary things of life. He is optimistic for continued improvement, and will rescan after 3 more cycles.

So, I continue with the same chemo, Xeloda, same dose.... I will likely have a bit of trouble with my feet, but we will keep the dosage as high as possible for as long as possible.

Thank you to everyone who keeps checking in on me and for your posts, too.... I feel like a very ordinary person, just doing what each of us would do in the same circumstance, so I feel that praise is unwarranted and I can't really imagine you are talking about me! But it is so nice to see your responses.....

So, for me it is a time of gratitude and patience. "Hope is patience with the lamp lit" - Tertullian.

Cheers - Joanne

Shopping fun

OK, this was a lovely, huge fitting room in Nordstrum Rack - designer section - where we learned about how some fitting rooms are nice and luxurious, unlike the dumpy variety we are usually in. Success all around, as all the girls (including Kelly) found a dress. The Sherlocks in particular will be stunning at upcoming weddings, graduations, etc...

And thank you to Loretta, who gave me a little shopping spree as a gift, what fun, and here is the proof that I really was in the store, and had a GREAT time choosing a gift. And yes, it was St. Patrick's Day, and we are nothing if not faithful to the wearing of the green.

This is my week off Xeloda, and I am quite sure that I am feeling better, people keep telling me I sound better, and I am certainly a little more active, which is very enjoyable for me. My feet have begun to hurt (as expected for the side effect called Hand-Foot Syndrome), but that will be managed with dosage, as long as the drug is working. That story will be told soon, as I have a CT scan on Thursday, and will know the results on Tuesday, April 10.

In the meantime, for Easter, Gord, Brian and I are headed to Minot, ND along with our friends, Anne, Chuck, Ryan and Chad. Michelle and Craig are unable to make it, but they were home this past weekend. Making a trip to North Dakota for Easter brings back many fond memories of all the years we did that as a family along with the Reidy family, so I will be happily thinking of that all weekend. Wonderful memories, I hope our kids have as much fun as we did back then, and the grown-ups hope to get a few hands of bridge in by the pool as well!

And of course, there is a Target in Minot, and who isn't happy just being in a Target store?

Happy Easter all... I will check in next week with the results of my CT scan.

Happy Birthday Mom and Dad

We celebrated Mom and Dad's birthday a day early, on St. Patrick's Day, since Darryl and I had flights home on the actual birthday! The photo shows two of my nieces, Laurel and Heather, and my dad and mom.....

Thanks to everyone who contributed to my dad's 70th birthday "book"... it turned out really great and I am pretty sure it will be treasured.

Darryl and I had a great (short) trip to Phoenix to be there for the birthdays.... Darryl flew through Calgary so I had assistance for the flights, and that was great, plus, he then had the pleasure of my company !!!

Medical updates: I am in the middle of Cycle 3 of Xeloda....... feeling about the same, still some cough and shortness of breath and I need a lot of sleep..........

Upcoming: CT scan April 5, results April 10, keep your fingers crossed because all in all this is a tolerable chemo regime, probably the most "easy" chemo I have been on....

"Week Off" Xeloda.....

It is warm and sunny in Regina, but NOT THIS NICE.... this was a photo from our Phoenix vacation last month...... the "boys" were enjoying the bumper boats....



Well, I have already completed two rounds of Xeloda, and although I definitely feel a bit crappy on the days I take the medication, it is very tolerable overall. And on this first day of my week "off" I am actually feeling quite spry for a change. I was even out for a few errands today after my bloodwork.



And it is great to be out right now in Regina, it is warm and melting everywhere, sunny and pleasant... likely temporary, but spring is in the air....

That's the update for this week, I'm hoping to continue to feel better.......

Joanne

Second cycle of Xeloda

This is mom and dad's back yard in Arizona..... lovely and peaceful and warm!

I am just about through the second week of the second cycle of Xeloda. I can say with certainty that I am not feeling worse, and that is a good thing..... I think the coughing and shortness of breath might be improving, but I am still kind of limited in my activities.

Am hoping for continual improvement... it was great to see Kelly this week, she and I were working on a big "project".........also looking forward to seeing Loretta.... otherwise, it is more R and R for me, and am hoping for more functionality as the medicine continues....

Cheers - Joanne