Friday, August 22, 2014

Timing is everything

I knew that this day was coming. I have endured nine chemotherapy treatments and up until the past few weeks, I have had quite a bit of my hair still. Being blessed with a full head of thick, dark hair and alot of it, my hair loss has been a slower process than many other patients who have ABVD chemotherapy. This week on Tuesday after a wonderful visit with an old friend, I gathered the strength and courage to admit to Jason that it was TIME. Time to take control and shave my head. We set out to the garage and after we both shed a few emotional tears, we just made it happen. No pictures, no documentation. It was over quickly and I have to admit, I felt great and so glad that it was finally done. It was something I felt like I was waiting for to happen for months now. Waking each morning to see more and more hair on my pillow and less on my head has been a difficult process. I almost wish that it had happened more quickly but I was able to creatively deal with my hair with hats and scarves while still having some hair peeking out beneath. It is still a shock to me to see myself in the mirror, having no hair. Getting ready to go out is a quick process, scarf or wig and we are done!

This past week Carole and I had the opportunity to have a retreat to my Aunt's schoolhouse near Collingwood for a few days. It is such a relaxing place to be and Carole and I got some much needed girlfriend time together. I was also nominated this week to participate in the ALS Ice Bucket Challenge by my teaching partner Cailin. How appropriate to be able to do the challenge with Carole and Marilyn at the Osprey Schoolhouse. My dear friend Paul Chambers as many of you know passed away from ALS this past year. I think he would have enjoyed all of the ice bucket videos, my two friend Pam and Tracey are also participating in the challenge. I would have liked to do it with them. What a way to raise awareness for such a debilitating disease. I made the decision quite quickly that I would do the challenge proudly sporting my new "do", really there wouldn't be any other way. I am on my own journey with a disease that is thankfully temporary, quite different from ALS which is permanent. This is a symbol of the battle that I have faced and continue to face each day. So challenge done, posted on facebook and donation to ALS made. I honour and dedicate my ice bucket challenge to Paul Chambers in his memory and I continue to be inspired by the spirit in which he faced his illness as I navigate through the next weeks of my remaining treatments.
Here is a screenshot of my ALS Icebucket Challenge video.

Wednesday, August 13, 2014

Trust Your Instincts

Watching the ducks at the cottage reminds me of instincts. This duck knew that other ducks were nearby and automatically protected her young.  I have learned in this journey that my instincts and my gut feeling has carried me far. As I mentioned, the previous treatment I struggled with back pain near my kidneys right after receiving my chemotherapy dosages. I spoke to the oncologist about this and this treatment we decided to have me take Tylenol #3 as a preventative measure as well as another medication that is supposed to help with reactions to one of the chemo drugs in my ABVD regime. As well, he has ordered urine testing and possibly a kidney ultrasound (depending on the findings). While the back pain was considerably less, it wast still present, I worked through it with painkillers but this nagging feeling remained. I had also shared that I felt that I was using the washroom constantly. My sleep was interrupted at night because I was awoken with the urge to go. I know I am drinking alot of water but something just didn't seem right to me.

I received a call from Dr Stevens Tuesday night, confirming my worries. Bacteria was present in the urine sample when they started growing the culture in the petri dish. It is a bacteria normally present in healthy people but because my immune system is non-existent I am not able to fight off the bacteria like a regular healthy person. They will continue to culture the sample as they can pin point the exact type of antibiotic needed to fight the infection. 9 times out of 10 amoxicillin is a penicillin that they will prescribe but one person out of 10 may need a different drug. He has started me on 10 days of amoxicillin until they know the results for sure and if they need to change it they will. I noticed a difference quite quickly after starting just two doses of the medication. I slept virtually through the night for the first time in a very long time. What a difference it makes to actually sleep!! I am thankful that I advocated for myself and listened to my gut, I knew something wasn't right. I am so grateful that Dr Stevens continues to listen to me, and responds so quickly to my descriptions of the symptoms I am dealing with. I am fortunate to have him on my team. Jason continues to amaze me with his care for me. From hot rice packs for my back, back rubs, warming my feet, preparing my Heparin injections, making meals and driving to pharmacies half way across the city, he never ever once complains or makes me feel guilty. I love you Jason, thank you.

Sunday, August 10, 2014

Pereseverance and Hope...Continuing to move forward

"Those at the top of the mountain, didn't fall there."

As I stand at the base of the mountain called "Treatment #9" I am reminded that to overcome and climb this mountain I once again face alot of hardship, struggles and difficult days. As I near the end of the treatment cycle of two weeks, I see a glimpse of "Michelle before cancer" lurking beneath the surface of the fatigue and lack of energy. I begin to feel a little bit like my old self, just enough to give me the strength and perseverance to keep moving forward.

The past few weeks have been a mixture of difficult realizations and wonderful experiences.

Difficult because I am reminded on a daily basis that my levels are fatigue are increasing and cumulating as they told me would happen. Simple tasks are so draining, only someone who has lived through this could possibly understand. I start my day feeling relatively strong, and able, as the day continues if I don't make sure to recharge my battery as I talked about in my last blog post, I will crumble into tears and require twice as much time to function. I have said this so many times to Jason "I am so tired of being tired." Difficult because my hair has continued to thin and fall out, I can be found in a variety of head scarves, funky hats and wigs. While on the outside, I can be often found smiling and poking fun of my new look, it takes a toll on my self-esteem and when I face the mirror I see such a different Michelle, it is my new reality for some months to come. Difficult because right after the last treatment I had considerable back pain near my kidneys. It scared me and I required some heavy-duty pain killers. We were almost back in emergency and was significant enough that my oncologist's nurse phoned me daily to check on my symptoms. We did not find the cause and I worry about it happening again tomorrow at my next treatment. It is causing me some anxiety, another struggle I am coping with every day.

Fast forward gears to the wonderful. The past few weeks have had many moments where the sun was shining down on us and the Low family were enjoying life. We were fortunate enough to spend a week at the cottage. This was made possible by CCAC and the Red Cross Care Partners. A simple request resulted in a nurse coming directly to our cottage in Wiarton on Colpoy's Bay to change my PICC line dressing (as it needs to be done once a week). Due to my white blood cell counts continuing to be significantly non-existent, the nurse comes directly to me rather than me going to a clinic or hospital. This was carried through with no issues at all. We had a wonderful family week at the cottage, sitting on the dock, reading books, watching the kids in the water, archery, ATVing, playing games. We were able to visit my parents in Southampton and have some time with my sweet niece and nephew. Our days this past weekend were very busy and although I made it through I did have a reminder that I just can't keep up to our schedule as I used to. We celebrated my dear friend's birthday with dinner al fresco and fireworks. And the highlight of my weekend was a visit on our 17th wedding anniversary to my best friend Jacquie's to meet her new baby Summer. Summer is a true miracle and an example for Jacquie and her husband Jeff that miracles can happen and that believing and never giving up hope will result in greatness. Despite the odds, Jacquie and Jeff have their beautiful little girl and I have the utmost respect and admiration for what they have been through. They are an inspiration to me as I need to instill the same perseverance and hope to believe in myself when the days are dark and I don't feel like I can go on.

So I move forward, after tomorrow 3 treatments left. I have an appointment with my oncologist tomorrow so it will be a long day at the hospital. Thank you to my friends for their visits the past few weeks, your support helps me in more ways than I can describe. Even the shortest of visits breaks up my days and makes me feel some resemblance of a "normal existence" outside of bed or the couch. This next week, short visits are about all I am able to conquer. I welcome your contact and please know that despite the difficulties I have described, I know in my heart, I am doing incredibly well and that there are other people who face far greater battles than I.