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.

Believe

"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.

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.

Celebrating the Life of Frank Low 1918-2014

“Carve your name on hearts, not tombstones. A legacy is etched into the minds of others and the stories they share about you.”

 Jason's grandfather, Frank Low lived a long, prosperous life and passed away on June 24, 2014 at the age of 96. We have been blessed to have Great Grandpa in our lives and to share his stories from years past with our own children. We have lived with four generations of Low gentlemen and Great Grandpa has created a legacy for Cam and Jordan to remember. 

We will remember Great Grandpa for his long-winded stories of coming to Canada from England. His days of youth playing football or soccer. Always interested in sports, he enjoyed watching videos of Cam playing hockey and in recent years, loved watching soccer, baseball or hockey on his large screen tv. When prompted to spend his money on a new tv, he finally went to Owen Sound and got a nice 54 inch television to prop up on his mantel in the living room, way to go Grandpa! He could be counted on to share his life experiences running Low's Fruit Market, the trailer park, mini-putt course and other businesses he put together in the town of Sauble Beach. Interested and knowledgeable about the stock exchange, he would sit in front of the same large screen tv looking over the stock market. We appreciate his large laugh, stories of growing up, stories about "Ronnie" to share with our kids about their Grandpa. He loved Grandma's baking and loved pouring cream on any dessert, English style. One of the funniest stories about Great Grandpa is when on a visit, he asked us to go to the basement to check on his wine. He ordered home-made wine by the large pail and when Jason went down to the basement to find the pail leaking on the floor, one has never seen Grandpa move quite so quickly down to the basement to inspect the damages. Oh how we laughed! 

We will remember and cherish two gifts from Great Grandpa that he made sure to give us quite a number of years ago to remember him when he is gone, A true piece of the London Bridge that he acquired in England and a special gold coin passed down through generations of men in the Low family to be given to Cam. We will cherish and hold these pieces dear to our hearts for many years to come.

We celebrate a life long-lived today. A life full of prosperity and success. A hard-working man who provided for his family right up until the end of his days. Jason had a wonderful visit with his grandparents a few weeks ago, and Great Grandpa recognized him as "Ronny's boy", a visit Jason is grateful for. We take comfort in Cam and Jordan having the amazing opportunity to not only remember their great grandparents but hold stories and memories dear in their hearts of the legacy left behind. We take comfort in knowing that Grandpa died exactly the way he wanted to, in his own home, on his own terms. We are saddened for the loss of the head of our Low family, sympathetic for Great Grandma who is mourning the loss of her life-long love of her life. A void in her home that she will feel everyday. But we celebrate a great life and contribution to our memories and lives of children, grandchildren and great-grandchildren. Thank you Frank Low. We will miss you.

Cheers to the beginning of Cycle #3

CHEERS - "Sometimes you want to go
Where everybody knows your name,
And they're always glad you came;
You want to be where you can see,
Our troubles are all the same;
You want to be where everybody knows your name."

How very different 3 months can make. I am now part of the Cancer family at the Grand River Cancer Centre. A place that I never envisioned I would visit so often. A part of a group that I never thought I would be apart of. I so vividly remember the fear I felt walking through the large wooden doors and lining up to register back on that cold March day. No clue where to go, or what to do. I was spinning and lost. 

Fast forward to this week. I am greeted with "Michelle!" and a huge smile. Joking with the familiar faces, "I'm back again." Up the stairs, check in with my on-line symptom reporting kiosk, wave to the nurses at the registration desk in the chemo suites, back to the PICC line blood draw, sign in, wait for the time it takes to process my bloodwork. Waves to my favourite nurses, a hug from one in particular. We bonded the day that I wasn't able to receive treatment and she held my hand as the tears of disappointment came. It is such apart of my life right now, this special place. The place that is healing me. I need them. There are usually the same amazing volunteers who work in the chemo suites, never stopping, always checking in with us, do we need juice, water, icechips, gingerale. Offers of hard candies or crackers are always there, let me get you a heated blanket, tucking it around my feet. I have learned the comforts from home to pack. A larger cup so that the volunteers don't have to get ice for me quite so often, a pair of cozy socks to keep my feet warm, healthy snacks, change for parking, my stack of magazines, my i-pad and of course my phone. Texting back to my friends who are all checking in on me knowing that it is treatment day. 

Monday I was at the Cancer Centre for my bloodwork and my appointment with Dr. Stevens. Tuesday, was my 5th chemotherapy treatment, technically called Cycle 3A. My appointment with the oncologist went very well. Dr Stevens, exclaimed, "look at how slim your neck is!" The lumps in my neck are barely palitpable, they have shrunk significantly. We go through my side effects, how I am feeling. He continues to say how great I am doing. I can tell he is quite shocked that I still have a pretty full head of hair, he assured me that it does not indicate whether the treatment is working or not.  Everyone responds differently to chemotherapy and in time I will most likely lose all my hair or most of it. I can atest that it is coming out all over my bathroom floor on a daily basis, but not in clumps like I envisioned. I will ride this out as long as I can. We discussed my blood results and most tests are in the normal range. My neutrophils continue to hover around zero but his plan is to continue status quo as I am feeling well and do not have a fever. He said that recent studies indicate that putting me on Neuprogen (the injections for white blood cells) is not advisable with the type of Chemo drugs I am receiving (ABVD) - the B drug can cause lung and breathing issues (which I don't have) but the chance of problems increases x20 with the Neuprogen shots. I was thankful for this, as the daily Heparin injections are enough for me. There are two other tests that indicate that my liver is slightly inflamed but this is also normal for my type of chemotherapy. Platelets and red blood cells are perfect in the normal range.

I have two appointments coming up that I am looking forward to but also cause me a little bit of "scanxiety". I have a CAT scan of my chest and neck on June 30. This test is a repeat of the CT scan I had before I started treatment so they can compare the size and swelling of the lymph nodes in my neck and the mass in my chest. Then on July 8, I go to St Joseph's in Hamilton for a PET scan. You will remember back that I had a Gallium scan, this is a similar test but thankfully doesn't take as long (holding arms above my head for 45 minutes) This scanner is more up-to-date, Grand River doesn't yet have a PET scan machine. This test will show with a radioactive tracer, where cancer cells still appear in my body. I see Dr. Stevens on July 11, for the results of these tests. I am excited to hear that the cancer is leaving me but understandably anxious. 

So while I realize that my new "normal" involves being on a first name basis with the staff of the cancer centre, it has become my new family. The rooms in the chemo suite are filled with others whose "troubles are all the same". I look forward to the day down the road where my visits become less and less but I will be forever changed by this experience. 

Thank you to my amazing staff who continue to check in with me and send me pampering treats in the mail, the Straus family for cooking for us, they inspired Jason and I to bake our own rhubarb loaf, with rhubarb from the cottage. My dad and my mom who is recovering from a cold and will hopefully be able to take me to a chemotherapy treatment in July.  Jason's parents for taking care of us this past weekend at the cottage and giving so much love to the kids. Jordan got to spend the weekend with Grandma, they both needed some grandma love this weekend. Angie from Hopespring who calls to check in with me to see how I am doing. I also need to give a shout-out to our ETFO representatives, I am so grateful for the support and immediate assistance I have received with every question. Stay tuned for my wonderful experience with Cancer Care Path. A service available to ETFO members that is unbelieveable.

Michelle 5 Hodgkins 0 - almost half way there!! Love to you all. xoxo 

Celebrating the Fathers in our Lives

"Be more than a father, be a dad. Be more of a figure, be an example."

Since being diagnosed with cancer, I have certainly had many opportunities to acknowledge what a truly amazing husband I am blessed with. Not only has he been there with me every doctor's appointment, every long night, every fear, and giving me every hope, he has been the example and measuring stick of love for Cam and Jordan. 

The cries of "Daddy!" and patter of feet running towards the door has always filled my heart, seeing Cam and Jordan run for Daddy when he arrives home. The joy on their faces and his willingness to play, Daddy bedtime routines, camping trips,  face flumpers, bike rides, building of igloos, backyard pools, sandboxes even after working shift work has set the bar high for many dads in our lives. These past few months, Jason has been blessed with the gift of time to focus on our family rather than his career. Somehow we have been given this chance to have Jason at home, to not only take care of me but to nurture and support our kids. Jason has become the gymnastics cheerleader, chauffeuring to competitions in Ontario, watching long hours of routines, now in charge of videos and picture taking honours. He has made many many trips to the arena on his own, late night practices, 4 on 4 games, playoff hockey. He is counted on to provide play-by-play updates via bbm to me at home while I am in bed, too tired to make it to a game. He has attended parent interview nights, drives to school in the rain, orthodontist appointments, doctor and dentist appointments, nighttime bike rides, provided computer programming advice to Cam, building laptops for the kids, studying for exams and tests. The kids know that their Mom is not able to do everything she usually does but without question their Dad is there to take on the Mom roles and still be the "Daddio". He has embraced this struggle in our lives to have an ultimate opportunity to be there for his kids. He is not just a figure, how he handles my cancer diagnosis provide our kids with someone to look to for comfort and knowledge that everything is going to be ok.

Thank you Jason for taking on so many opportunities to be there for our kids when I physically can't. You never ever act show you are tired, or scared or frustrated. I have been working to refrain from saying "I'm sorry can you...." because I know you will just do it because that's what husbands and dads do. We will one day look back on this time in our lives and smile at the time we have been able to spend not only together but with our kids who are at an age where as teenagers they will be drifting away from our home and beginning to make their own lives. How fortunate we are.

Jason and I are also incredibly blessed with having our own Dads in our lives. Grandbob and Grandpa are such important figures in our kids lives. They have set the bar high for us as parents in seeing them continue to care for our families as parents do. We couldn't do it without their support and love. 
This coming weekend, celebrate all the fathers in your lives. Embrace the chance to spend time with your families as we are going to do up at the cottage in Wiarton. I am continuing to seek out the positive ways that cancer is changing our lives. As I have said before the gift of TIME is one of the biggest revelations I have made. We only have so much time, allow yourself more time for your family and less time for the other stuff. 

What is Neutropenia?

This week I completed my second cycle of chemotherapy, each cycle being 2 treatments. The treatment went smoothly and I have been recuperating up at my Aunt's schoolhouse near Collingwood. The country fresh air, relaxed atmosphere here and how beautiful it is,  nurtures my soul.

While at the hospital for treatment, I have bloodwork done each time and I did learn from the oncology nurse that I have severe neutropenia.  "Neutropenia is an abnormally low count of neutrophils, a type of white blood cell that helps fight off infections, particularly those caused by bacteria and fungi." My neutrophils are at zero! So you can't go much lower that that.

If you have severe neutropenia — fewer than about 500 cells per microliter of blood — bacteria normally present in your mouth and digestive tract can cause infections. So being that I have zero cells in my blood, I am greatly at risk for infection. I will need to be extremely careful with hygiene, hand-washing, hand sanitizer and choosing to go to functions where there are larger crowds. I have been instructed to take my temperature twice a day and if my temperature is above 38F then I need to go directly to emergency. I got the message that there no messing around with this as it can be life-threatening if I have an infection that is not immediately treated.

Since I have been feeling well and have not had any signs of infection, Dr. Stevens allowed my chemotherapy to proceed despite the neutrophil levels. They will continue to monitor my bloodwork and there is a possibility I may need to have daily injections of Neupogen in addition to the Heparin shots I am already giving myself. I will see the Oncologist on June 16 and will find out the next steps in terms of how they are going to treat the Neutropenia, or whether they will just monitor me.

All things considered, I am coping with the side effects and taking each day as it comes. I am grateful for the time I am spending here at the schoolhouse. We have had walks, lunch at Lora Bay, a trip into Collingwood and patio time at the Firehall Pizza, one of our favourite places to go in town. I have been sleeping great and while I am tired, I feel ready and prepared for the next few days that I know will be difficult.

Jordan has had a busy few days, she competed at the County Track Meet last night and came in 3rd place in the High Jump. Today, Jason and Jordan left early to drive to Oshawa to the Reach for the Top Invitational Competition. Jordan came in first place on the Bars and second place on the Beam. She was also awarded a special award for "Best Free Hips" on the Bars. It is not recommended for me to be surrounded by such large crowds with my current bloodwork standing, I am sad to miss the chance to see Jordan and cheer her on. She knows and understands that I am her biggest fan and am there in spirit. I need to limit my contact where I am able to and while it is hard and I am disappointed that cancer is getting in my way, I know that it is only temporary and will be worth it in the end.