Wednesday, July 23, 2014

Beauty and the Beast

"Fatigue associated with chemotherapy is like a bad battery for your device... it takes a long time to charge, it depletes for seemingly no reason and no matter how long you charge it at night it just can't hold its charge all day. About mid-day you must power it down to re-charge it, if even for a little bit or it will slow down, freeze up, crash and power itself down on its own."

Fatigue is a very different beast than simply being tired. I cannot describe the feeling of fatigue that I feel on varying degrees every day. When they warned me and I read about the fatigue associated with chemotherapy in all the reading material provided to me on my first visit to the cancer centre, it does nothing to prepare you for how it actually feels. Many people exclaim to me "how good I look" often in surprise. While on the outside, I can function and carry on with simple tasks for short periods of time, only those who truly live with me have seen how quickly fatigue can come on and overtake me. It can come on so suddenly that I could be out enjoying myself one moment and then this deadweight feeling comes that is like trying to walk under water and I need to sit, and go home NOW. There are times where the simple act of climbing the stairs fills me with dread.

I have been relatively fortunate with the side effects I am facing with each treatment, annoyances continue i.e. metallic taste, mild nausea, mouth sores, dry skin, hair loss, but the fatigue seems to be increasing and lasting longer during my off week between treatments. I am trying to rest and sleep when my body dictates and am exercising in small amounts going for walks with Jason, often at times dragging myself around the block. I haven been cautioned that the fatigue will accumulate with each treatment and will continue for months after my chemotherapy treatment is completed.

In my moments of darkness, I become quite emotional, mourning the loss of my energy levels, remembering what Michelle used to be able to accomplish in a day. Our busy busy lives often had us driving each night, rushing to complete errands, going to hockey games, working until 5:30 often many nights. I am sad for the Michelle before cancer and hate the changes that cancer has forced me to accept. I know that my strength will come back, but it is hard not to be frustrated with what I used to be able to do, compared to how hard it is to accomplish small tasks now. One cannot possibly understand this unless you have lived this similar journey. Thank you to those who understand how fatigue is affecting me daily. While I may look "amazing" on the outside, there are days where I am struggling and I certainly have a long way to go in my recovery still.

There are so many wonderful beautiful moments to share with you from this past week.

After some considerable prayers and rest, I was so grateful that I was able to attend the full day festivities for my cousin Darcy's wedding. Darcy was born a decade+ after me and she was my first experience "babysitting" and taking care of a little baby. I loved carrying Darcy around, playing with her and taking care of her. One of my favourite pictures is Darcy and I sound asleep cuddled on the couch after a full afternoon of Cabbage Patch kids and babies. This would be the last wedding of our cousins and it was so important to me that I was able to attend and see my relatives. Particularly since I had not seen many of them face to face since my diagnosis, there were quite a few tears and hugs, relief of my good news and seeing that I am doing "ok". I am so happy I was there. Words can't describe it. I can only hope and wish that I am as blessed as my grandma, Gigi who has been able to attend and see all 6 of her grandchildren marry and find happiness. We had a great time at the wedding, and I was able to stay right until the dance floor was packed and the cousins were having a great time.

Sunday afternoon, my best friend Jenn and her daughter Rosie were home from Calgary and we had a bbq at K and K's reuniting not only a close knit group of adult friends but a group of "yurting" kids who have known each other their whole lives. Heart warming to see them pick up where they left off, Jenn and I were able to have a great visit Sunday night, Monday hanging out and a market trip Tuesday. How I have missed her so. I am so happy to she has found true happiness as well and her blended family is together and complete. Despite the distance, our friendship will stand the test of time. Jordan is looking forward to a 10 day trip to Calgary in August with her "sisters" Maggie and Rosie. 

I am able to travel up to Southampton beach for a stay with my parents this week, Jason will be joining me and we can't wait to have a short getaway at Ben Miller Inn this weekend. A fantastic musician Matthew Hussey is playing at Ben Miller again Saturday night, we loved seeing him a few years back. A great way to spend the weekend before treatment #8, the end of cycle 4 this coming Monday. 

Love to you all, thank you for the visits, had a great catch up with a wonderful hockey mom this week. The week of July 28, there are no kids at the Low house and I would love a chance to catch up with anyone is around. Call or text me, I welcome the company with Jason working now.

Tuesday, July 15, 2014


"No pessimist ever discovered the secret of the stars or sailed to an uncharted land or opened a new doorway for the human spirit" ~Helen Keller

Positivity and believing is said to be related to recovery and the human spirit. While I have definitely had moments of fear, doubt and darkness I have truly believed that I am going to be ok. I received the wonderful confirmation of this last week.

I received the results from my oncologist from my CT scan of my neck and chest as well as the PET scan results. A PET scan is used to detect cancerous cells in my body. The CT scan measures any enlargement of lymph nodes through my chest and neck area. I am thrilled to share that the PET scan shows "No abnormal hypermetabolic activity demonstrated post 3 cycles of ABVD to suggest active residual disease specifically no abnormal hypermetabolic activity at the anterior mediastinal mass."

The CT scan shows that there remains a mass in the medistinum area which lies in the middle of my chest between my heart and lungs. It has reduced to  2.8 x 4.6 x 7.4 cm. There has been significant improvement in the reduction of the mass size but more importantly is that the PET scan shows that there is no longer cancer cells in the mass. I loved the analogy used by Dr. Stevens, my oncologist.

He said the mass in my chest is like an apartment building that everyone has moved out of. We got rid of all the"riff raff", the mass is like a frame with nothing inside of it. Our job is now to burn that building down and make sure that no "riff raff" can move back in (cancer cells)

The plan is to complete all 12 treatments of chemotherapy to best ensure no chance of relapse and an eventual cure. Technically I am said to be in remission and this term will be used for the next five years as that is how long I will need to be cancer-free to be considered cured from Hodgkins Lymphoma.

So I soldier forward with my treatments. The beginning of Cycle 4 was yesterday, so 5 treatments remaining which will take me to the end of September. The side effects continue to be manageable. The fatigue is the most crippling issue that I am dealing with and the effects will be cumulative, gradually increasing as the treatments continue. I do have a considerable number of "good days" thankfully, and I am enjoying them to the fullest.

Thank you to Jason's parents for their unwavering support, and enabling us to enjoy the cottage life, being by the water has been such a rejuvenation for me. Having our dear friends Kristen and Karsten there with their boys made for the best celebration weekend after we received the news of my remission. I look forward to a week of rest, as we have my cousin Darcy's wedding this coming weekend which I aim to attend even for a small portion of the festivities. I have learned to take one day at a time, not put a lot of pressure on myself, rest when I need to and take it as it comes. The good with the bad. Knowing there is an end to this part of my journey and new ones waiting for me down the road. xoxo Love to you all.

Thursday, July 3, 2014

The Good, The Bad and The Ugly Part 3

The Good - "Hope is beautiful." 

I am quickly leaving Cycle #3 behind me. The half-way mark of my 6 month chemotherapy treatment. It seems hard to believe,  as when I first started this journey I have to admit 12 treatments certainly seemed unattainable and overwhelming. Approaching it one treatment at a time, one week, one day has made the mountain seem much smaller as I look back. Of course, the forward horizon of six more treatments to go seems insurmountable but I know that I have the strength and perseverance to get it done. 

Wonderful experiences like I had today make facing these treatments a little bit easier. The good in the world shines through on a daily basis when facing a cancer diagnosis. My best friend Carole and I attended a Look Good, Feel Better Workshop at the Grand River Cancer Centre today. There were two other brave women at the workshop and it wasn't long before we were laughing and comparing chemotherapy stories as we tried on makeup products, wigs and scarves. It made the scary process a little less so, when you know that there are others going through the exact same thing as you are. We were blessed to have an army of volunteers with tips and tricks to use to help us feel beautiful and attractive despite the annoying side effects that come along with cancer treatment. Thank you to those women who give their time to provide this wonderful program, once again we are so fortunate to have these resources available to us so that we don't feel alone in this journey. Thank you to Carole for coming with me, our shared life experiences of eyebrows, zits, makeup expiry dates and lack of knowledge made me laugh and your tears of empathy made me cry. It was exactly what I needed today.

I also wanted to share a resource available to us through our OTIP teacher's pension plan and our ETFO union. It is called Cancer Care Path. After a phone interview and consent forms were signed, I have been matched with an oncology nurse, MF who has 27 years experience at Princess Margaret Hospital with lymphoma/hematology patients. She arranges weekly or bi-weekly phone sessions with me to answer any questions I have, help me prepare questions for the oncologist, review symptom management with me, provide emotional support and counselling. She has access to all my records at the Cancer Centre and has presented my case to an Oncologist who will help make recommendations on treatment, follow-up and will stay connected with me during my recovery once treatment is completed. I find myself looking forward to her phone calls and have quickly established a rapport with her that I am finding so comforting and helpful. She is a voice to me that I can ask questions that I may forget to ask at my oncology appointments, or feel silly asking. She has given me strength and helped me with those "what if" questions by reviewing all the positive outcomes I am experiencing with my treatment. One more cheerleader for me who just happens to be a qualified professional, once again, how fortunate I am to have such a great support system.

The Bad - "Scan-xiety"

June 30 was not only my 6th treatment but was also a repeat CT scan of my chest and neck. The CT scan will show the whether there are lymph nodes that continue to be enlarged, the oncologist will compare the lymph nodes to the scan done back in March when I was first diagnosed with lymphoma. As well, it will show progress on shrinking (eliminating) the 8 cm mass in my chest in the mediastinum area. Understandably, I am trying to not let my anxiety come through in worrying about the results of the CT scan. In my heart, I know this to be true. 

I have not had one night sweat since I started treatment. I have not had any fevers, my itchy skin has disappeared and I can no longer feel any swollen lymph nodes in my neck. None. These are all wonderful signs that I am responding to chemotherapy. My heart knows this to be true. I know that there will only be positive news. My heart knows this. Sometimes my head gets the better of me and I ask those "what if?" questions. The what-if questions are unfortunately what I am going to have to live with for many years to come. The conflict between my head and my heart, and my gut will be my greatest struggle.  Next week, the PET scan will provide further confirmation of where the cancer cells still lurk in my body, the knowledge of exactly how much of the battle is left for me. I will have scans done every three months and then every six months once I complete treatment so this "scan-xiety" is not going to go away. Please be patient with me as I work through this. I will let all of you my loved ones and army of supporters know the results of these tests when I am able to. Thank you for your continued words of support, encouragement and positive thoughts. It means more to me than I am able to adequately express to you.

The Ugly - Anticipatory Nausea

I am going to share with you one of the most difficult side effects that I have been dealing with recently. It is a lesson in Psychology 101, remember back to university days friends. Classical conditioning and Pavlov. As my next treatment day approaches, I am beginning to become more nauseous and unconsciously anxious about having to face side effects all over again just when I start to feel back to my normal self. Since I have had a few experiences with chemotherapy my brain has established the pattern that goes along with it, knowing what's coming understandably I want to avoid this pattern. The negative stimuli being the nausea, groggy feeling, saline taste in my mouth when they flush my picc line... these are all triggers for me. What I have learned is anticipatory nausea is very very real. I am actually feeling real nausea based on my previous experience. I really had a taste for it this week and it was not pretty. It was downright something I need and want to avoid. We are going to try some new tactics next time. I have been doing my research and I am going to be better prepared after a great talk with the wonderful chemotherapy suite nurses. I have realized that you need to speak up, ask for help and advice and not be afraid to "do whatever it takes to get yourself through it" as Sandra (oncology nurse) says.

Thank you to Jason and a compassionate company by the name of Hoerbiger.  We have wonderful news to share that Jason will be starting a new position in two weeks time as an ERP Specialist. An amazing company who agreed to Jason working part-time for July and August to allow him to continue to focus on my recovery. He will begin full-time in September. This change may result in our having to call upon those of you who have offered to help us out with driving kids etc. We will be sending an email out with some dates where we may need some assistance picking up Jordan from her gymnastics training. Thank you in advance for your friendship. Thank you to my aunts and uncles and extended family who continue to send cards, emails and phone calls. Even though we don't see each other as often as our friends in daily life, we love you and feel your support and positive thoughts. It takes a village to raise a child and somewhere along the line, you helped raise me up and provided a role model for me growing up. Thank you.

Thank you! Half-way, couldn't have done it without you!

Sporting a new scarf, hair is slowly thinning out.