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.

Seriously? A Blood Clot?

"Welcome to the unexpected in life, I am learning to bend with grace."

Just when I think I am coming out of the fog of Chemo Round 2A,  I am side-swiped unexpectedly. I was asked to return on Tuesday for a follow-up ultrasound to check in on the superficial clots around my picc line. My arm was the one part of my body that had been feeling better, there was no more swelling, the pain had pretty much gone. I expected a routine ultrasound, no big deal. It was the same ultrasound technician as last week and the first thing she said was, "You still have a picc line in?" Hmm, that doesn't sound good. It soon became apparent during the ultrasound that things were not going all that well. I was asked, "Do you have an appointment at the cancer centre today?" No. Then she had to leave the room and said she would be right back. Ok, freaking out a little bit here!! She returned and had gone to speak to the Radiologist. Not so good news. She let me know that I had a clot in the vein of my Picc line that has now travelled up towards my shoulder. I had no symptoms of this, no pain, no swelling, no redness. They asked me to go over to the Cancer Centre to see Dr. Stevens and he would need to decide what to do. They would send over the report right away. Heart pounding, I text Jason (who is in the parking lot so we don't have to pay for parking) and off we go to the Cancer Centre again.

Once again, how thankful am I that I can walk ten steps and arrive at my oncologist office?

Off we go, "We're back!" I arrive at Clinic B and it wasn't long before one of the nurses is looking at me, she's on the phone to the ultrasound radiologist and I am back in an examining room. It was about an hour and Dr Stevens is with me and we are coming up with a plan. So blood clot in the picc line vein, "not a good thing." We ran through some options, all not real viable. He consulted with another blood cancer doctor and a decision was made based on the following:
- the Picc line is working for me and the clot was blocking about one-third of the vein right now
- I need the Picc line for my chemotherapy treatments, it is part of saving me
-if they take out this Picc line and put another one in chances are, that there will be another clot - something that is not entirely uncommon with Hodgkins and blood cancers
- the same thing could happen with a Port-o-Cath - and you can't see the signs as easily
- since I had no symptoms, it was caught early - a good thing

Starting immediately (yesterday), I am now going to need to have a Low Molecular Heparin injection in my stomach, once a day. This is a blood thinner that will work to prevent more clots, help break up this one and prevent this one from moving anywhere dangerous. They gave me my first shot at the hospital and within 30 minutes, CCAC is there setting up a home care nurse to come today to teach me how to give myself the injections. Can you say overwhelming? We went down the pharmacy to fill the prescription. My bathroom is really beginning to look like a pharmacy. We have hazardous waste containers, syringes, medications. The heparin shots are also very expensive. Once again, how grateful are we to live in a country and have a career with such amazing benefit coverage. We are truly blessed.

So here I am. Coming out of the haze of my last chemotherapy treatment. Finally starting to feel somewhat myself. Dealing with a few residual side effects. And now, I am faced with this next hurdle. I will need the injections for the remainder of my treatment. But think. There are many people facing diabetes who live with his for a lifetime. It is just something I am going to have to do.

I am thankful today for a beautiful sunny day and the opportunity for both Jason and I to watch Jordan at her Divisional Track and Field Meet. The smile on her face and wave when she saw that we came is worth all of the hardships I face. I do this for my kids. Jordan placed first place in high jump, third place in standing long jump and was on the 2nd place Tug of War team. She goes to the Country Finals next week for High Jump! We are incredibly proud!

The Good, Bad and Ugly - Part 2

The past few days have been incredibly hard. There have been some dark moments where I am waiting for the sun to rise and a new day to begin. A new day promising to be one step closer to regaining strength and feeling better. Each day, each treatment brings me further towards being cancer-free. Is it easy? Absolutely not. Do I try to remain positive, every single day. But there are seconds and there are minutes where I hate cancer, I hate how it's changed my life and how it makes me feel. Just when I think that I can predict the pattern that my chemotherapy treatments will take, something changes and what was manageable becomes harder and I lose just a little bit of control. And I hate that. I hope that as a new day dawns tomorrow that the worst of this round is behind me. I have been struggling with great fatigue, achy joints and bone/jaw pain. I have been sapped of energy and even simple tasks drain me. I am sleeping a great deal with the aid of pain medication and anti-nausea pills, which leave me groggy and drowsy. But, with the bad and the ugly, I can always find the good, the positives that I can take away with this treatment.

The Good: I am one quarter of the way finished. 3 out of 12 treatments completed. Each one is getting me closer to the finish line. My arm where the Picc line is, is no longer painful. The aspirin a day seems to be helping with the blood clots. I have another ultrasound scheduled at the hospital tomorrow for Dr. Stevens to check on how it appears. I have hope that it will be good news. I am fortunate that I have not been plagued with a great deal of nausea or vomiting. It has been much more tolerable than I expected it to be. There are other things to look forward to this week. Visting my best friend J, who is expecting a sweet baby, with my dear girlfriends is something I can't wait for. To be surrounded by those women who know me and where I came from, that laughter will be the best medicine for me. I will also have the opportunity to watch Jordan at the Divisional Track Meet, something that doesn't often happen due to my work and scheduling of provincial testing. I continue to embrace these wonderful opportunities and blessings that arise from being at home during treatment. Thank you to the wonderful friends who visited last week, a coffee, a lunch of soup and salad, a smoothie, stories from school, a note from a student, all ways that my friends are rallying to care for me. I thank you.

The Bad: My hair is coming out much more this past round of treatment. While I am ready with an awesome wig and scarves, I am not sure how much preparation can really help one adjust to this. I hope to embrace it with humour and grace but will need to rely on my friends and loved ones to help me smile and face this change.

The Ugly: The pattern of my treatment is becoming predictable, I am able to prepare for the fatigue, tiredness, insomnia that comes first. Followed by sore mouth and teeth. Followed by body aches and exhaustion and constipation. I am well-equipped and the doctors are taking wonderful care of me, I appreciate all the suggestions from everyone and am beginning to figure out what works and how to best care for the side effects. It hasn't been easy but I know that there will be light at the end of the tunnel.

And so I move forward...there is sunshine, there are new flowers emerging in my garden. I look forward to the sun rising with each new day, reminding me that there are better days ahead. I love each and everyone of you who make my days and nights comforting and filled with hope.

Bottle Drive for Leukemia and Lymphoma Society of Canada

The Bottle Drive for Leukemia is a fundraising event by the Beer Store to raise funds for the Leukemia and Lymphoma Society of Canada. It is a little known event that I found out about through an email sent to me by HopeSpring Cancer Support Centre. Often we hear about fundraising events for other specific cancers i.e. Pink Ribbon Campaign and Breast Cancer but we don't always have the same publicity for other cancers such as blood cancer research. I just wanted to use this blog to promote and raise awareness for this event that is coming up May 24-25, 2014 this coming weekend at your local Beer Stores. Jason and I plan to visit our Beer Store on Victoria Street to lend our support and thank the organizers behind this event. If you choose, you can direct 100% of your bottle refund to be donated to research into blood cancers such as Leukemia and Lymphoma.


Thanks for your consideration to this worthy cause, near to my heart.