Tuesday, September 30, 2014

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?

Wednesday, September 17, 2014

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!

Monday, September 15, 2014

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.

Tuesday, September 9, 2014

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

Monday, September 1, 2014

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.