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,
Monday, April 29, 2013
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.
Tuesday, February 12, 2013
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.
Monday, February 4, 2013
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.
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!