Summer Update

Things have settled down a bit since my last post. The whole brain radiation worked, and things there look good. The new drug combo of Letrozole and Afinitor are keeping things stable in my bones and most of my liver. However, there are 3 tumours that seem to have developed a resistance to treatment, and have grown. So I just finished high dose radiation to one, and am waiting to do radio frequency ablation(RFA) to the other two. I'm feeling ok, other that tired. I'm very thin too, and don't have the energy to do much, so I have to pace my day. The kids got home this week from 3.5 weeks of camp. We had a great visitors day last weekend and loved seeing Camp White Pine for the first time. I'm so happy to have them home though. I hated them being gone, and found the house way too quiet. But they had a great time, and I know it's such a fabulous experience for them. Zach's favorite thing at camp was sailing. So Mark pulled out his laser today, and they're heading down to Scarborough Bluffs this afternoon to try it out. Zoe is just happy to be back with her American Girl dolls, although she told me today that she wants to stay for the whole summer next year...I don't think I could bear it!!! We're hoping to get away in August if we can. A cottage visit, maybe North Carolina to see Wendy, Phil and the kids. But I can't say for sure until I know what's happening with my next liver treatment. Wishing you all a great summer. XOX

Troubled Times

The last two months have been my most challenging yet, both physically and mentally. When I got home from Germany everything got out of control. My brain MRI did not show the results we had hoped for. There were 3 new spots, as well as a few other questionable areas. So the stereotactic radio surgery treatments I received were not keeping up with the cancer. My doctor now wanted to do whole brain radiation...how devastating and scary. I feel like this has put me in a whole new realm of reality, and it has challenged my optimism. To make things even worse, my bones started to cause serious pain and immobility. They are showing signs of progression. For the first time, I can't do the things I want to, and I really feel like a sick cancer patient. I hate that my kids must see me like this. I've now finished 10 rounds of radiation to my head, one to my shoulder, and five to my hip. There have been minimal side effects other than major fatigue. Oh, and I lost my hair again...third time bald. I've also started a new drug to treat systemically, my bones and liver. I'm on hormone treatment, plus Afinitor, which makes the hormone treatment more effective. Hoping and praying that all these treatments work, and I get another LONG period of stability. I want to thank all the people that helped out during this difficult time, driving kids, walking the dog, getting groceries, and taking me to my endless appointments. We are so grateful to have you all in our lives.

Renewed Energy

My first hyperthermia treatment last week went well. But still my fatigue lingered, and my hemoglobin remained low. So yesterday I got the gift of life...a blood transfusion, 2 bags full! Today I feel like a new person. I have so much more energy, and colour in my skin. All my hesitations about getting blood are gone. It was the best thing I did! Feeling better, with renewed energy, brings better spirits and a new sense of excitement. I can't wait to go home and start living again. But my second big treatment is tomorrow, and discussions are still on about what treatment is next. Home again on Sunday.

Back to Germany again

In January I got very positive scan results. The tumours on my liver shrank by 15%. SHRANK! That's the first time they shrank since the original chemo I had three years ago. So it's very exciting news. The icing on the cake was that my doctor was very impressed, and said that and he fully supports me going back to Germany. Such great news. I feel like my intuition, and my decision to go has been validated. The treatments in Germany seem to be doing great things for my liver. But I have been having frequent pain in my bones, and I'm feeling really tired again. The last few weeks have not been easy. Truth be told, I'm sick and tired of being tired, and in pain...existing, and not living. My friends have been awesome, my kids an inspiration, and my husband a blessing. I am surrounded by love. But this is a difficult journey. If Germany is helping, then off I go again! I arrived yesterday, this time with Sue. I'm so glad to have her here with me, and appreciate that it took a lot for her to get away. It was hard leaving my kids at home for the second time. But knowing that the treatment is helping, and that it's only 2 weeks definitely helps.

Hair?!

My hair is falling out like crazy! How can this be?! I'm worried that the "low-dose chemo" I had in Germany is killing my hair. I just spent $200 on it this week too! Did we ever talk about it? OMG...freaking out, and feeling like an idiot! I had the stereotactic radio surgery to the small spot on my brain. Looks like the Germany treatments didn't help with that, even though they were hopeful it would. Lets just hope it helped my liver. On the positive side, I haven't had any bone pain at all since my treatments there, and a swollen lymph node has disappeared. I'm visualizing positive scans!! The kids have 2 more days of school. I can't wait for a quiet holiday at home. Best holiday wishes to everyone. Thank you for all the prayers this past year. Love to all, xox

Home Sweet Home

Ive been home from Germany for one week now. My last treatment there went well, and was a little easier to recover from than the first. There were no streaking incidents this time! My white blood cell count is low now from the chemo, and I'm waiting to do a CT soon, so I'm not getting any treatment for now. The Germany doctors want me on hormone treatment, but my doctor here won't give it to me if I'm still getting chemo. So things are still up in the air. Unfortunately, I also have to go tomorrow for another radiation treatment to my brain. And then I'd like to forget about it all for the holidays, and just enjoy the time with my family. I probably won't have much energy to execute all the usual Christmas activities, but we can still hang out and enjoy a few pajama days! Our time together is the most important thing after all. As a final note, I would like to say thank you to so many people that helped make things happen at home without me. This included all the driving, groceries, dinners, play dates, and putting out a few fires! Thank you to all our incredible friends and family. You helped make this trip possible, and gave me such comfort to know that things were taken care of.

Final Round

Today is Sunday, and I'm preparing for my final round of hyperthermia tomorrow, and my last week here in Germany. The task this week will be to recover quickly so that I can travel home well, and to establish a regimen for when I get there. I've recently learned about a doctor in Frankfurt that may have a special treatment for my liver, that some people have had huge success with. So I need to look into that too. There will most likely be another trip to Germany in the not so distant future. I feel very optimistic that I've found some great treatment options here. I want to share a funny story...after my first hyperthermia, I seemed to be having a hard time coming out of the sedation. My memory of the first night is very spotty. But the doctors laughed when they told me that I climbed out of my bed (with the side rail up), gathered my catheter very neatly and hooked it onto my IV pole, and went into the hallway to call for someone. What they didn't tell me was that I was butt-naked! I realized afterwards as I was telling the story, that I didn't even put on a hospital gown until much later that night when I was more lucid. No wonder they were laughing when they told me! I've had a few surprise phone calls this week. Thank you SO much. It was great to hear from you. Xoxox

Recovery

Today I finally came out of the chemotherapy fog. The first day after treatment I was mostly tired, but the second day was so much worse. I could hardly get out of bed and had no appetite at all. Today I am up and about, but still not much energy, and achy from being in bed so long. I was so happy to have Evie here with me, she took such good care of me. I felt sad to say goodbye to her this morning. Between not feeling well, and missing my family, it was just that much harder. I'm looking forward to my Mom coming on Sunday. At 2 weeks, I've had enough of this place! I'm not sure how much longer I can stomach the food here...I think mom's job will be to find me food in town! The doctors have told me that my treatment was very successful...defined by being able to attain a high body temperature, and maintain it for a long time. I got roughly 2 hours over 41 degrees, without any complications. My next treatment is scheduled for Monday, and they say that the second treatment is usually much easier...let's hope! Yesterday was Zoe's birthday. Although I wasn't feeling up to it, I managed to talk to the kids at school. Zach's teacher has been so fantastic, and coordinated it for us. Then Mark sent some video of the family party...so nice to see them talking and interacting. Thank you for all the emails that were sent to me over the last few days. It's taken me a while to get to them. If anyone wants to call, you can reach me in my room at 011-49-8061-398148. Keep in mind I am 6 hours ahead of Toronto time. Xox

End of first week

Ruzana left on Friday morning. It was so great to have her here with me, and the time passed so quickly. The room seemed strange with her gone. But it's also been nice to have some quiet time to myself. My cold has turned into a cough, and my voice is still not back to normal. I slept a lot yesterday, but then went out for a really nice dinner with Craig and his Mom, my fellow Torontonians. It felt so good to get dressed, with makeup, and venture out on the town. The restaurant was beautiful, with great food, and we even had a glass of wine...so civilized and normal. Today I am preparing for my first whole body hyperthermia treatment on Monday. This means only liquids after breakfast, and then I have to drink one of those colon cleansing preps like before a colonoscopy. The treatment involves insulin and chemo, befor heating my body to almost 42 degrees, and will take most of the day on Monday. My friend Evie is driving in from Frankfurt today, to spend a few days with me, and to help me recover from the treatment. Today is a gorgeous day, and I'm heading out now to see the local Christmas market and get some fresh air. I've been speaking to Mark and the kids almost every day. I really miss them, but feel good knowing that everyone is helping to keep them busy. Thank you Bunny, Dana, Sue, Carole, Alison, Val and Karen for the driving, dinners, and play dates.

Treatment Day 3

Unfortunately, on my second day here I started developing a bit of a cold. I blame it on the plane trip, and the dry air here. So I haven't slept well for 2 days, and today I have no voice. I'm hoping it starts improving, or it could delay things. My first week of treatment is under way, and we've settled into a bit of a routine. I get 2 infusions of Vitamin C or other nutrients, 1 hour of local hyperthermia (HT) to my liver, magnetic field with oxygen therapy, detox foot bath and ozone therapy. Most of these things are every day. It's a very busy schedule, but we've been trying to fit in a walk and fresh air every morning, as well as a few stretches at some point. All this sitting around is making me very stiff. The big treatment here is the whole body hyperthermia (Wbht). I think I'll be getting one treatment next Tuesday, and one in the final week. This involves some fasting and colon cleansing the day before, giving insulin to lower blood suger, and administering low-dose chemo, before heating my body to around 40C for 2-3 hours. Most of this is done under anesthetic. The doctors are very optimistic that I will have positive results from this treatment. So that is very exciting! Also, it sounds like things are going well at home without me. Apparently the dog misses me the most! Thank you to everyone that is helping out, and has offered to help. I wouldn't be able to do this without you. Xox

Arrival in Germany

Ruzana and I are here in Germany, at Klinik St. Georg, in the town Bad Aibling, south of Munich. I am so happy having Ruzana with me. It was hard to say goodbye to Mark and the kids, but I was fine once I got on the plane and could relax. The clinic is in an old Monastery that operates like a hospital. The doctors and nurses walk into our room as they would in a hospital...we've learned to lock the door! On our first day here, we got settled, had a nap, and I saw a doctor. I was also happy to meet a fellow Torontonian at dinner. It's very comforting to know he's here too. We had a decent nights sleep, and I went for bloodwork, an ultrasound, and my morning vitamin C infusion. My daily infusion takes place in the comfort of my own room, and takes a few hours. So this is my time to email and update my blog. This afternoon I am supposed to meet the head doctor, to go over my treatment plan. But we're hoping to get out to see the town at some point. All this sitting around could get boring. But for now, we're happy with it...I think it's time for another nap!

In a slump - off to Germany

I've been in a bit of a fog for the last week. My last 2 infusions of chemo and my bone drug have each caused intense pain, fatigue, and feeling bad overall. The last few months have certainly been difficult, and caused a shift in mood. This in turn causes a general downward spiral of sadness and lost motivation. But it's temporary and I'll pick myself up again and move forward! So what's next? 1) We've cancelled my next chemo...this may be the end of Vinorelbine. 2) I still need to have a brain MRI to see the results of my last SRS treatment. But my latest CT scan showed everything else is stable. 3) All my research of possible treatments has led me to Germany. I'm not ready to go for another round of heavy chemo. So I'm planning to make a trip there in a few weeks. They will use hyperthermia and other alternative therapies in conjunction with low dose chemo. I think the time is right, and if I don't try it, I will regret it. I hate to leave the kids for 3 weeks, but they will be surrounded by family and friends, to help out while I'm away. I will be accompanied by my friend, my Mom, Mark, and my friend that lives in Germany. Between them, I'll have someone with me for the whole time. I'm not looking forward to it, but I'm hopeful that it will make a difference in my life. I'll be there November 18 - December 9, and will try to keep you updated by blogging my experience. When I get home, we'll redo my scans and re-evaluate what's next. Prayers and positive light please!

Croatia

I never had a chance to post anything about our family holiday this past summer...a post about something good this time! We had an incredible holiday in Croatia this past July. It was fantastic to spend 2 weeks together as a family. Life seems so busy these days, and we don't get enough time together. We arrived in Split, Croatia, and spent 2 days exploring the old city before boarding our 49 foot sailboat. Then we sailed the adriatic coast for 1 week, with our skipper Marco. The water and coastline were spectacular, as well as the small fishing villages where we spent most evenings anchored off shore. We ended our week in Dubrovnik, an 800 year old walled city. It was so beautiful and historical. What a great experience for us all. Here's a few pictures of our trip.

SRS Update

Yesterday was a very long and anxiety inducing day. Getting the halo attached to my head was so traumatic. I really didn't know what lay ahead, but I'm not sure that would have helped! The halo weighed about 5 lbs, and was screwed into my head with 4 screws. Then I had a CT scan for them to plan the radiation treatment. After that, I had 8 uncomfortable hours to wait for the treatment, with that thing on my head. Thank you to Dana, Alissa, Natasha and Astrid for stopping by, to see me at my worst! It really helped to pass the time and to cheer me up. Most of all, I am so grateful that Wendy could make the trip from NC to be with me. She held my hand every step of the way. I can only imagine how difficult is was for Mark to watch me go through all that...I love you hon. As scary as this process was, I feel fortunate to have been able to get it here at Sunnybrook. This advanced technology wasn't available in Canada even 4 years ago. I woke up after 12 hours sleep feeling pretty good. But I tired out very quickly, and had a bit of a headache. Surprisingly, the screws only left very small spots on my head, one over each eye, and I didn't have the swelling I thought I would. Im just glad it's all over! The radiation will continue to attack the tumor over the next few months. I'll do an MRI in 2 months to see how it's working. It will work!! My hopes for this fall are to get active and strong again. We had a great summer, but traveling, kids schedules and chemo left little time for me. So I'm hoping to get back into yoga, and anything else I can to get Strong. Love and blessings :-))

New Trouble

This journey just keeps on giving! Unfortunately, my last CT scan showed a small spot on my brain...one of my biggest fears. So tomorrow morning I'll be having Stereotactic Radio Surgery. It is targeted radiation, which doesn't affect the surrounding tissue. The scariest part is that they attach a halo to my head, to stabilize me. I'm so nervous about this procedure. But I also feel confident that this is the right treatment, and it will get rid of the lesion. The rest of my cancer is stable, so I will continue with my current chemo...2 infusions every three weeks. I'm so happy that Wendy made the trek home to be with us, and to hold my hand tomorrow. Its been a crazy week with the kids back at school. So I really haven't had time to update my friends. But I wanted to let you know. Please send your prayers and positive energy my way! I'll post an update as soon as I can.

Chemo - Round 3

I always knew the day would come, but I'm still overwhelmed to think about another round of chemo. In March, after a year and a half on my easy and well tolerated Xeloda, the disease in my bones started to progress. The thought of chemo caused such anxiety at the time, that I chose to try hormone treatment. But unfortunately, it's not working. Things have continued to progress. So here I sit at the hospital, waiting to attack this beast for the third time, this time with Vinorelbine. Hopefully we can knock it out for a while, so I can have another long run of health. I don't really know what to expect, but they say this drug is very well tolerated. School wraps up next week. It's so hard to believe Zach and Zoe are finishing grades 4 and 3. They've each had a great year. Zachary got 3rd place in the grade 4 speech presentation, and is so excited to have won a house head position in the recent elections. Zoe has also had a great year, is loving gymnastics, and has mastered riding a bike. We're going on a trip to Croatia soon. I'm so excited to take the kids to Europe for the first time. I hear it's so beautiful there, and a week on a 49 foot sailboat will be a great adventure for all of us, and great for family time together. Wishing everyone a beautiful summer!

Fall is Here

As the kids return to school, I reflect on the summer past. Time flies so quickly. We had a nice summer, with time at the cottage, summer camp, and hanging out at home. I continued having pain in my back, which interfered with working out, and my overall well-being. But I finally started taking a new drug for the achiness, and had one dose of radiation to my lower back and hip. Wow!!! I feel like a new person!! It was immediate relief...I am so thankful. So we settle into a new school year. Zachary is in grade 4, and Zoe in 3. We're back to homework battles, and the business of the school year. I don't remember life being so crazy when we were kids. It's difficult to find time for joy, fun, and family time together when there seems to be so much for everyone to do. It seems silly to put "have fun" on the calendar, but sometimes necessary! This year I've also taken on the role of Treasurer of the school parent council. I'm having fun looking after something other than my family. And although its great to return to life's normal activities, I'm trying to remember my self-care, and life's priorities. When focus strays from blessings and gratitude towards wanting more...things, vacations, time...joy is lost and an uneasiness sets in. So I'm planning to fit in more walks, pilates, and meditation...Om! We're also planning to walk 5km in the Scotiabank Waterfront Marathon on October 16th. Please consider joining us, or making a donation to sponsor me. All proceeds raised by my team will go to Wellspring Cancer Support Foundation. See the direct link to my personal page below to make a donation. Happy Fall!

Please support the Scotiabank Toronto Waterfront Charity Challenge This year I'm hoping to raise $5000 towards Wellspring Cancer Support Foundation...my lifeline during my cancer diagnosis and treatment. Your donations are greatly appreciated!! Thank you for all the incredible support...together we raised over $10,000!!

It's been so long since I've done a blog update. Life has been busy, and that's a good thing. So here it is in a list...in no particular order.

~ I'm learning to breathe more deeply, and to live with more gratitude each day.
~ I'm working to align my priorities with how I live my life. This is not as easy as it sounds, as I get caught up in to-do lists. But I'm trying to let go of the "should do's", and not feel guilty about doing what gives me joy.
~ I think about moving a lot these days, but I'm not sure where. I'd like to downsize and simplify, but would also like a pool, and something more urban. I'll have to play with this idea some more.
~ I've finally started reading for pleasure again (as opposed to research). I've read Secret Daughter, Cutting for Stone, and next up is The Help.
~ My Sister is moving to North Carolina. I felt an intense sense of loss and sadness when she first told me. She has been my go-to person in my journey with the health care system. I always know she's there for me when I need something, or someone. I also feel so sad for Zoe and Zach, who will no longer have cousins in Toronto. Zoe especially has had a very close relationship with Mikaela, which we'll have to continue to nurture. I'm beginning to accept the move, and see the possibilities...opportunities for travel, and maybe some family vacations together...maybe it will make for better quality time and connections.
~ I'm trying to get back into scrapbooking, and documenting our story, photos, and daily life. This can only happen when I choose to do that which gives me joy.
~ Zachary just turned 9! I still think of him as my baby, and remember so clearly the day he was born. He is smart and creative; loves Lego, Star Wars, Star Trek, and has letely become obsessed with Harry Potter. He has almost finished the first book. We have just introduced him to golf, and he seems to like it, and has a nice shot too.
~ Zach and Zoe have both learned to ride their bikes without training wheels. We are looking forward to some family rides together this summer.
~ I'm still on the same chemo I started last August. My tumors have remained stable. My bloodwork has been excellent, so I convinced my doctor to let me see him less often...now every 4 weeks. What a huge deal to not be at the hospital so often.
~ The kids have finished school and we are looking forward to the summer...camp, Niagara wine tour with friends, 2 weeks at a cottage.
~ As much as I try to exercise, for both my mental and physical health, it always seems to cause more pain. Possibly periformis, but I'm not doing much these days, as I try to figure it out. It seems as though I always have one pain or another, although I'm feeling pretty good most of the time.
~ For my Birthday/Mother's Day gift I got an iPad...I'm loving it.

I'm so happy to report that I've just seen my new oncologist today (who I really like, by the way), and my last scans showed that my tumours shrank a bit more. I am so encouraged by this news.

I feel like I've been doing so much research this past year, and still don't have many answers. I'm still trying to put my healing plan in place, and settle into a routine given this new knowledge. I have recently discovered a website that has become my main source of information and inspiration ... Crazysexylife.com. Kris Carr was diagnosed with stage 4 cancer 8 years ago, which took her on a journey to discover how to heal herself through diet and lifestyle changes. She has basically done much of the work for me, and put it all in her new book, Crazy Sexy Diet (which I was reading until 1:30am this morning!!-way past my bedtime!). But she is also very inspiring and motivating, which helps me along. She's awesome...check her out if you have a chance.

I like to attribute at least some of my success to the changes I have made to my diet and my complementary therapies. At least it makes me feel like I have some control over my disease. I still have a lot of work to do to incorporate more yoga, visualization and meditation into my life - how do I find the time?! But I see myself healthy and present for a long time to come!!

Namaste.