Fortunate to be a Canadian

As I watch the funeral service for Corporal Nathan Cirillo, I am reminded how fortunate we are to live in this great country of Canada. How quickly life can change, in the blink of an eye, a family and nation's feeling of safety and comfort is gone. It is a reminder of the fragility of life, and that we live life in a balance. There are events that are out of our control and we seek ways to respond.

I did not ask for this diagnosis of cancer. That was out of my control. I am blessed to have had excellent health care and access to an abundance of resources and treatment available in our country of Canada. Because of our health care system, Hodgkins Lymphoma is a cancer with a high cure rate and one that has many lines of treatment that have been proven to be highly successful. How blessed and fortunate am I.

I talk much of being grateful. It is a feeling that I feel very strongly about instilling in my own children and I share freely with our friends and family. I am grateful that my oncologist Dr Stevens is being thorough and taking no chances in my treatment. While I would have preferred to hear last week that my appointments will lessen and my treatment is complete, I know that in ensuring the best chance of a cure we need to seek consultation and opinions of specialists in the field of radiation.

I will be having a follow-up PET scan on November 4 at St. Joseph's Hospital in Hamilton, ironically this is the hospital where I was born. I will then meet with Dr Steven Sagar on November 12, a radiation oncologist at the Juravinski Cancer Centre in Hamilton. My case will be reviewed by the Haematology team and recommendations will be made based on the PET scan and CT scan results to determine whether a course of radiation is a necessary. Having to endure radiation treatments are not something I look forward to, particularly after beginning to gain my strength and feel so much better in the past few weeks however, I know that I need to do everything I can to be cured of Hodgkins Lymphoma so I can continue to be a survivor.

In the meantime, I look forward to beginning physiotherapy treatments again and will continue to build my strength. I will soldier forward and meet whatever comes my way. Thank you for the ongoing support of my close friends who accompany me to tests, phone calls and emails saying hello and visits during the week to fill my sometimes long and lonely days as I recuperate.

The Icing on my Cake - Not just Remisson, Going for a Cure

The blog has been quiet during the past few weeks and that's a good thing. While I love sharing all of the wonderful happenings in our life and updates about my journey, normalcy is something I have craved and the lack of updates mean life is slowly returning back to a "new normal".  Each day I spend time regaining strength and I take enjoyment in simple tasks that have been absent the past six months. While I have considerable strides to make in terms of my energy, strength, fatigue and endurance, I see small improvements daily.

I have been learning to live as a survivor. Anxiety and worry are new feelings that I am learning strategies to manage and keep at a distance with assistance from counselling support and the nurse from Cancer Care Path. The worry of the cancer returning will be at a peak in the coming months and will lessen with each week and positive test result. But it still remains.

I recently had a CT scan of my neck, chest, pelvis and abdomen. I saw Dr Stevens yesterday for the results and an update on my bloodwork and recovery from chemotherapy. The CT scan results showed that there continue to be improvement in my cervical lymph nodes (neck) with "sub-centimetre shoddy nodes" which I have been assured means scar tissue left over from the enlargement. The lymph nodes in my armpit continue to be resolved. There is no indication of any lymph node involvement in my pelvis or abdomen and all organs appear to be normal. The mass that is in the mediastinum area of my chest has decreased. I was a bit disappointed to hear that it's size is still 7.5 cm x 2.9 cm - 3 months prior it was 7.5 cm x 4.4 cm. Dr Stevens said in the medical world particularly when we are talking about tumours in the chest area, a decrease of 2 cm is significant. He was pleased with the results and said we are moving in the right direction and in his words "it's all good".

Dr Stevens, (being the thorough doctor that he is) explained that he would like to refer me to see a Radiation Oncologist who specializes in blood cancers and has a vast experience with lymphoma and treating it via radiation. Dr Steven Sagar works out of the Juravinski Cancer Centre and is going to give Dr Stevens his opinion on the costs/benefits of radiation therapy as an additional treatment to ensure me the best chance of an eventual cure. Dr Sagar would like me to have a follow-up PET scan in the next couple of weeks before my appointment so that he has confirmation that I continue to be in remission or whether there are lurking cancer cells (which is unlikely) that have surfaced since the end of my chemotherapy; we need to know that definitely before we can proceed. Dr Stevens said he doesn't feel that there will be active cancer cells based on the CT scan and my lack of symptoms however we need to be exactly sure. Of course, this will continue to cause me anxiety and worry leading up to the PET scan. If there is any indication of active cancer cells, radiation will be a certainty and we will "zap" those cells!!

My bloodwork results were fantastic! My white blood cell count, specifically my neutrophils have already returned to normal range! This is quite remarkable considering they were 0.1 - they are at the low end of the normal range but they have revived. A great sign. My immune system is still compromised and I need to continue hand washing, sanitizing and staying away from illness where I can. My other blood counts were all within normal range except for three liver counts that continue to be elevated. This is very normal after the type of chemotherapy I have endured and Dr Stevens expects that they will come down in the coming weeks/months. I have a follow up appointment with him on November 14, 2014 to check in on the bloodwork and hopefully by then the PET scan will have been completed.

I am realizing that being a cancer survivor is almost more difficult than being a cancer patient. I have been struggling with the emotional/mental aspect of my recovery and while I know this is very normal for cancer survivors, I have been surprised at how much the worrying thoughts occupy my mind. Having the PET scan will bring peace of mind but the worrying of the "what ifs" leading up to the scan will be difficult. The good part is that I recognize my worries and have many avenues to voice them and talk my way through the scenarios.

I know that whatever comes my way in the next few weeks and down the road,  I will be able to face and overcome it. As the quote says, my track record for getting through difficult times is 100% so far. I can make it through anything. In the meantime, I am so enjoying life, my family and getting back into a routine where I can be apart of my kids lives, driving them to their sports, going to Cam's hockey tournament in Cleveland, watching gymnastics training, I am on my way back to being the "hands on mom" I have always loved being. This weekend we will celebrate my birthday and I will take joy in all the amazing blessings we have and am grateful to feel as strong as I do. I will continue to kick cancer's ass and work to regain my strength and endurance. I take comfort in knowing that I am in good hands and have doctors who are being thorough and paying attention to the icing on my cake - not just remission, a cure.

Our Yurting Weekend of Gratitude

February 2005 a group of families came together to embark on a new adventure, winter camping in a yurt. Organized by my dear friend Jenn Somers, with our children ages 1-5 we had our first yurting weekend in a snowstorm, with no power. Of course, we stuck it out in the freezing cold conditions, shoveling our way out and making the best of our conditions. The Pinery offered us a free night of yurting between September and November to compensate us for the lack of power, this is how the fall yurting tradition started. Fast forward 10 years, there are two of the original families still apart of the group along with new friends who have joined our yurting family over the years. Once you have been apart of this special weekend, it becomes part of your family's traditions. Now there are 6 steady families who make September and February weekends a non-negotiable part of our year. I am so grateful for the support of these amazing people.

We all knew that this fall yurting weekend would be an extra special one. My last chemotherapy treatment took place on Monday, when we booked our yurting weekend, the timing was going to be a little bit better for me but some delays etc took place over the course of the six months of treatment. Hence, I knew that I was not going to be feeling my best but we as a family decided that I might as well be surrounded by friends and sunshine even if I am not well. I am so thankful that over the course of the weekend, I had the energy to sit on the deck with my best friends, laugh, celebrate and watch our kids having the time of their lives. With Jason's help I made it to the beach for a short time on Saturday and was able to enjoy Lake Huron and bask in the sunshine. Everyone was so amazing with their support, taking care of our kids, feeding us and realizing that I was going to need frequent naps and early bed times.  The weekend could not have gone better.

What made the weekend most special was something my daughter Jordan organized. This 14 year old girl, is wise beyond her years, empathetic, thoughtful, caring and above all has learned how important it is to be grateful for all we have. Jordan created a "yurting grateful jar" decorated with pictures of our group from all our yurting years, ribbons to symbolize the cancer cells leaving my body and pictures for everyone from our yurting group to write down how they are grateful for me, thankful for what we are blessed with and appreciation for my journey. It brought tears to all of our eyes that this 14 year old girl would put this together on her own, she has shown unbelieveable maturity in supporting me in my cancer fight and I couldn't be prouder.

My wonderful friends Kristen, Trish and Karen arranged for the kids to make me a banner posted on the side of our yurt congratulating me on finishing treatment and beating cancer. The best part was a t-shirt proclaiming "I kicked Lymphoma's a**!" Everyone signed the back of the shirt and I wore it proudly all weekend. I am so priviledged to call these women my closest friends. As I have said before, these friends have shown our kids that friends really are part of our family. All of them love our kids like their own and have shown our family such unconditional love and support through this journey. Thank you.

Our 10th annual yurting weekend approaches in February 2015, I look forward to enjoying the winter experience stronger, full of energy and on a healthy path to wellness.

When Will I Return to Work?

This picture symbolizes the heartbreak that I feel when I think of Cameron and Jordan and their perspective of what having a Mom go through cancer treatment must be like for them. Each and every day when they come home from school they are greeted by our closed bedroom door. This closed door means many things to them. Mom is sleeping again, Mom is too tired to get up and make us dinner. Mom is having a nap. Mom is having a hard time. I lie in bed behind that closed door and have cried many tears as I hear life going on in our household in my absence. Dinners appear from loving friends or get made by Jason, homework gets done, hockey practices have happened and sleepovers have continued.

Almost as soon as I was nearing my last treatment the questions began. Innocent questions from well-meaning friends, acquaintances, colleagues, relatives. "So now that your treatments are over when are you going back to work?" My career as all of you know has been my passion, my identity and so much apart of me. I would love nothing more than to be able to finish my treatments on September 22 and return to work full of energy and cognitive capacity the very next day on September 23,  ready to go non-stop from 8:00 am to 6:00 pm, working through my nutrition breaks, driving my kids to practices, getting home, making dinner and then leaving to go pick the kids up, sitting down to craft letters, IEPs, lesson plans, professional development day presentations, assembly videos. Unfortunately, this is not how recovering from cancer treatment works.

When Jason and I sat down with Dr Stevens on April 17, 2014 to discuss my treatment plans and he learned I was a Special Education Teacher working full time in a school setting, immediately he looked me in the eye and said, "Michelle, you need to treat this exactly like a maternity leave, but without the baby in the end. In the end you will have your life and health." What a shock to hear, a year off work? That can't be true. He explained that typically on average, it takes about one month of recovery time for every month of chemotherapy that your body endures. One month per treatment cycle for your body to process the toxins that continue to circulate throughout my body. Add to that, the fact that Hodgkins Lymphoma is cancer of your immune system and that currently my white blood cell count or my neutrophils which are what fight infections are 0.1. My immune system has been essentially wiped out and I am now starting over. Now this being an average and everyone knowing that I strive to push myself to be better than average, I feel that this timeline has some room. Room for my own feelings, re-building and that statement I have heard time and time again in the cancer world "Everyone responds differently to chemotherapy."

So I have a guideline. A guideline from my doctor and a belief inside of me that my body will guide me in making the decision when I am ready to return to work. Right now, I can't get through one day without sleeping for several hours in the afternoon. Driving Jordan to gymnastics is a task that I don't feel some days I can do safely due to my reduced cognitive functioning (Google the term chemo brain) Walking up the stairs or a simple walk around the block leaves me out of breath. I am at constant great risk of contracting an infection. I don't even know for sure that I won't be also facing radiation therapy in the coming months. Returning to work is actually far from my mind. Learning to live as a cancer survivor and getting through each day feeling stronger and stronger is my main focus right now.

And a true sign of when my body will be ready for the rigors of a full time job and full time mother will be the open door when my kids come home and Mom greeting Cam and Jordan enthusiastically at the door with energy and brightness that right now just isn't there. I realize that returning to work is a symbol that I am healed and well enough to return to the real world. It will come and I can't wait!

What Comes Next?

My last chemotherapy treatment!

Here I am one week past my LAST chemotherapy treatment. It is still hard to believe that I have finished 6 cycles, or 12 treatments of chemotherapy. I remember Easter weekend so vividly going for dinner at Kristen's right after my first treatment. The number 12 seemed so overwhelming and unattainable and here I am. Many of you have asked what happens next for me?

I had my PICC line removed from my arm the same day as my last treatment. It was a very quick procedure, painless and over quickly. It is so great not having to worry about having my line travel with me with every pull and stretch. The other reason it was so important to have the Picc line removed right away is that I have been diagnosed with "deep vein thrombosis" as I have a blood clot formed in my vein around the picc line. I have been taking daily Heparin injections in my stomach to prevent the clot from moving, more from forming and to manage it while the Picc line remains in my arm.

Yesterday, I had an ultrasound of my arm to check on the blood clot and determine next steps. The technician informed me that she was not able to locate a blood clot in my arm!! I am not sure whether she was supposed to tell me this, but she said it was good news. So I am waiting to hear from my oncologist to find out if this means that I can start weaning off the heparin injections. As I hate them!! I cannot wait to stop them!

During the next few weeks I will continue to recover from my last chemotherapy treatment. As I have mentioned previously, the treatments have been harder and harder to recover from. Knowing that next Monday I won't be having to go to the hospital for another treatment will really symbolize a new beginning of recovery for me. I return to the hospital on October 16th for a CT scan of my chest, neck, pelvis and abdomen to compare the CT scans taken before I started chemotherapy and the ones I had at 3 months. While I am nervous of the findings, I have to feel confident that they will show progress and improvement in the mass in my chest. I will also have a full bloodwork done as a major goal is for my blood levels to begin to return to normal. Particularly my white blood cell neutrophils which continue to hover around 0.1. My liver counts were also slightly elevated as well. I see Dr Stevens on October 22, and we will discuss what comes next. It has not been 100% confirmed that I won't need radiation therapy. While I try not to think about this possibility, I have to trust his judgement in making this final decision.

The beginning of my true recovery begins. My strength and energy levels are so weak right now. I continue to deal with mouth soreness, peeling gums, mild neuropathy in my toes (numbness and cold) and the feeling of achiness and fatigue. I long for increased strength and more days where I can begin to focus on my physical and mental recovery from chemotherapy and a cancer diagnosis. Learning how to live as a survivor is also going to be a huge journey ahead for me.

More amazing blog posts coming!! Our weekend of gratitude with our yurting friends at the Pinery and the question that everyone seems to want to know, When will I return to work?

I Can't Wait!

Hummingbird today in our backyard

As I sat in my backyard today in the sunshine, watching the birds and the butterflies. The breeze was blowing and the temperature was perfect. If I closed my eyes I could imagine and pretend just for a second that I was completely without pain, fatigue or worry.

Today is a good day.

I am beginning to gain some strength back from this second to last treatment. Typically around the Wednesday I start to feel not quite so flu-like and although I continue to deal with the fatigue, I able to face each day with a bit more energy. As I sat outside today I began to dream and envision all the amazing things that we will be able to do again once I am back on the road to recovery and I can't wait.

It is so easy to take small little things for granted. Very simple chores, outings, errands, visits. Something I would accomplish one hundred times a year ago now is such a big big deal. Tonight, feeling buoyed and energized after my nap I proclaimed to Jason, Cam and Jordan. It's half price burger night at Casey's we're going out for dinner! Do you know how long it has been since the four of us have gone out for dinner together? I am not even sure if we have since I have started treatment. Jordan was so excited, she put her arm through mine in the parking lot and said "Mommy is back!" We laughed and joked together, no phones out at the table. Just enjoying each other. Jordan drew a pie graph on the table, and said this small slice was Mommy feeling good and the rest of the pie I am normally in bed. We all talked about how the piece of the pie is just going to keep getting bigger where I am feeling good. there are so many things we can't wait to be able to do again. Here are a few that we talked about tonight, I am adding some of my own personal goals that I can't wait to do!

I can't wait to.....
- go canoe camping in Algonquin Park in August, possibly going back to High Falls, the kids favourite part of the park
- winter camping in February Check! Feb 6-8
- camping with our friends in the summer - try Arrowhead Park, back to Grundy Lake
- dancing at Abstract on Fridays with the girls again Check! April 29
- hiking a trail at one of the parks we camp at - Check! June 11-13
- going for more than just a walk around the block - Check! December 7
- riding our bikes together around Macgregor Point - Check! June 11-13
- cross country skiing up in Southampton
- camping at Cyprus Lake and hiking the Grotto
- birdwatching at Point Pelee, Lake Erie
- ziplining at Lake Erie
- running up the stairs without having to hold the bannister Check!
- dance parties with the yurting group out on our deck at midnight
- getting through more than one day without having to have a nap - Check - some days
- sleeping through the night without waking up Check!
- grocery shopping or shopping at a mall - Check!
- walk around NYC or Chicago all day long, two of my favourite cities
- return to work at school with such a great staff
- be able to work all day, drive the kids to their sports and not think about being tired
- watching all of Cam's hockey games and going to tournaments with our hockey parent families! Check!
- many more trips to the schoolhouse, to shop, eat, drink and be merry!!! (Dancing in the kitchen?)

One treatment left, several important appointments coming up in October. A whole lot of rest and recovery ahead of me. But I am getting there, one day at a time. I wouldn't have been able to do it without all of you.

I can't wait!

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.