Thank you for visiting my blog. I wanted to create it so that all the people close to me can check in to see what happening in my treatment, and how I'm doing. This doesn't mean that I don't want to hear from you. Please feel free to call, email, text any time. But I apologize if I don't always get back to you. This new cancer journey of mine is a full time job, and I'm doing the best that I can. Please know that your thoughts and prayers mean so much to me...keep them coming! Thank you for all your help and support too...it takes a community, and you have all given us that.
With love and gratitude,
Tuesday, December 18, 2012
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
Sunday, December 16, 2012
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.
Sunday, December 2, 2012
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
Thursday, November 29, 2012
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
Sunday, November 25, 2012
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.
Wednesday, November 21, 2012
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
Monday, November 19, 2012
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!
Wednesday, November 7, 2012
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!
Sunday, October 21, 2012
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.
Tuesday, September 11, 2012
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 :-))
Sunday, September 9, 2012
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.
Sunday, June 10, 2012
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!