Celebrating the Life of Lilian Hadsley 1920-2014

Our dear Great Aunt Lil was promoted to Glory this past weekend in her 94th year. Great Aunt Lil has been such a wonderful connection to the legacy of our Spence family. She is a gifted story-teller, having served missions overseas with the Salvation Army, it has been so inspiring to hear of her experiences and gratefulness for what life has had to offer her. Never one to shy away from opportunity and travel, I so cherish the visits and stories she shared when I was able to visit with her at Albright Manor. Often finding her at the "horse races", or yoga or bible study. She seemed to know everyone and loved introducing us to the nurses. She jokingly referred to Albright as the Taj Mahal. Knowing how fortunate she was to be able to live there comfortably and be taken care of. Aunt Lil loved to write me letters back and forth and hear about all the children's new skills, sports and academics. She loves hockey and loved watching Cam play hockey when I would bring my laptop for her to watch him in action. I smile fondly hearing her say "A bonnie lass" and a "bonny bonny boy". There have been several news articles written in Niagara and Grimsby about her travels and life. (http://www.chathamdailynews.ca/2010/07/17/look-at-all-these-posters) 

I proudly repeat them as in my eyes, she was an amazing woman, who gave her time and love to others. Rest in Peace and be promoted with Glory, Aunt Lil. You lived a full and wonderful life.

I am saddened that I will not be able to attend the Celebration of Aunt Lil's life as it takes place on the same day as my last chemotherapy treatment. I take solace in knowing that I have made the most of my opportunities to visit with Aunt Lil and that she knows how dear she is to me and how much we love her.  It is important that I stay with my chemotherapy plan and while I am upset that I will not have an opportunity to say the goodbye I would like, I will remember her in my own way.  

A Jumble

These past few days have been such a mixture of ups and downs, good and not so good. I have been processing and turning around this blog post in my head trying to figure out what I want to say. I knew that I had this need to write. As I have said before, this blog is more of an outlet for me to write and express myself and my own feelings as I continue through this journey that I have before me. I am just a jumble of what I want to say. I am torn between not wanting to sound as though I am re-stating the obvious once again, that I am finding these past few treatments incredibly hard and the fatigue crippling or on the other hand, how I am going to kick cancer's ass and how strong I have been. I am somewhere a jumble in between.

As I sit here today, I am one week away from my LAST chemotherapy treatment. My 12th treatment. A feat that back on April 22 seemed so unsurmountable and overwhelming. And I did it! Yes it has been hard, and yes I do not wish anyone to have to go through this. But I am facing my final chemotherapy treatment knowing that I am in remission and presently cancer-free.

How blessed am I?

So in the dark moments of loneliness during the months of September when everyone has returned to their lives of school and work, I am trying to remind myself that this is a temporary state of mind. I cannot let it get me down. I am almost there. One more treatment to endure, one more jumble of days where I am sleeping constantly, in pain, nauseous and unable to walk up the stairs without help. The sun continues to shine behind those clouds and little by little, day by day I am going to get stronger again. I cannot lose my faith. It will get better.

I also have to say thank you. (See I told you I was a jumble, I'm all over the place here.) Thank you to everyone who takes the time out of their busy lives to send me a text, a card in the mail, bake sweet treats for my family, an extra meal for us, a phone call, a well-placed visit even for a few minutes. Every single one of those special choices makes my day go by a little faster and reminds me that I am not alone in this. There are so many of you who have helped love our kids, make them feel like part of your family, provided drives to gymnastics and hockey. Cancer has shown my kids to be extra grateful to all the people in our lives who love us. It has given them a whole new appreciation of friendship and family. I think both Cam and Jordan are so much more aware of helping others and doing things for other families because we care, because that's what we do. So thank you for being such a wonderful example of love to Cam and Jordan. It has not gone unnoticed. They are very aware of all the wonderful things that have come our way.

Thank you for listening, for reading and for helping me sort through this jumble of feelings, fears and struggles that cancer has brought to our lives.

To That Level

There is a poster that I read on the wall of the Chemotherapy suite where I sit to wait for my bloodwork to be done. Today I hold on to that quote.

"It is important to remember that no matter what our situation, no matter what our circumstance, above the storm - above the clouds, the sun is always shining. We just have to elevate ourselves to that level." Tony H. Ward

Brave Face

"The strongest people are not those who show strength in front of us, but those who win battles we know nothing about."

Many of you see the strong side of Michelle, the outside portrayal of my strength. I put a very brave face on for most. Hiding away in the safety of my bedroom and home during my moments of struggle. Immediately after my chemotherapy treatments, the week following, I often do not have the strength for visits, outings or much contact outside my family. Jay and the kids unfortunately have grown quite accustomed to seeing me curled up in a ball in bed most of the day, some days crying from the discomfort and pain of what the chemotherapy drugs are doing to my body. As my treatments have progressed, there have been more days of difficulty and fewer days where I can put my brave face on and smile, laugh and face the world. The cumulative effects of the chemotherapy are building on each other, making the recovery time longer and my good days fewer. Have no fear, my spirit still remains,  even in moments of weakness,  my resolve and strength to fight this disease remain. I guess the point of this blog post is that there are many battles that many people face that we know nothing about. To some, on the outside, with my wig on, makeup, smiles on my selfies, I don't even appear sick. To a select few, the reality is that the chemotherapy treatments are kicking me in the a**.

This past weekend, several of my close friends, girls who have known me since highschool and university saw an inside glimpse of how sick I really am. The "Michelle" Jason sees at home, crossed over into the outside world where I try so hard to be strong and appear in control. Friday night, I so wanted to be normal and have a night out with my three close friends and Jacquie's sweet new baby girl, Summer.  It had been so long since we were all together and I was determined to join them even for a short time. This unfortunately did not go well for me. It soon became clear that I was struggling and I had told Jason it was time to go. I told the girls that I would be needing to leave. Surprise on their faces, what do you mean? We wanted to get one picture of the four of us together, during us getting our picture taken, I began to see spots, blackness and almost fainted. Very quickly my loved ones clicked into gear and I found myself being swept up in their love and caring, lying down with ice on my neck, my feet up, as waves of nausea swept over me. The Michelle I so vehemently try to hide was front and center and it was ok. There was no apologies just acceptance. That is how you know that you are in the company of true friends. Thank you Jacquie, Donna and Sharleen and your significant others, my body was reminding me that there will be times that I can't put that brave face on and that I need to let my friends see what's really happening to me and take care of me.

And so my 10th treatment and the end of Cycle 5 has passed. I am in recovery mode once again. Everyone keeps reminding me that I am so close to the end but to be honest, the last two treatments seem overwhelming and they just seem to be getting harder on me each time. I am on my second round of antibiotics for the urinary tract infection as it has not yet cleared up, so the discomfort from that continues to cause difficulties for me. Strangely, I am also dealing with increased nausea through this weekend which has not been typical for me. But I am learning that I need to adjust my sails continually and that predictability has not been the case for the past few treatments.

Thank you to our dear friends Jim and Cory who hosted a great dinner on their beautiful deck, something that was much needed for me. I thank God and am grateful that our son Cam was not more seriously hurt when he had a mishap on his bike this weekend. Everyday we are reminded how we take simple things for granted. Our two kids are both in highschool this year, I am so proud of the individuals they have become and look forward to getting up tomorrow morning to see them off on their first day. I look forward this week to an oncologist appointment to learn more about my next steps and hopefully a visit with some dear friends, one of whom is facing her own inward battle of true strength.

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.

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.

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.