Note: This is another long blog (albeit an easy read). I am feeling especially sappy and emotional and forever grateful for my support system.
I believe we show our true colours in how we react to adversity. The same can be said about our friends. I found this saying: “If someone wants to be a part of your life, they’ll make an effort to be in it.”
This past year made me dig deep within myself to get through the most challenging experience of my life (so far). It made me discover who I am and realize and acknowledge my strengths and capabilities. I love life and am certainly not ready to give up. It’s not always easy and many times I have prayed for help in finding the strength and energy to get through it all and my prayers have been answered.
Whenever I think I might not have anymore to give, there’s a little spring deep within that bursts with inspiration and energy to enable me to get through what needs to be done. Often, that inspiration comes from my friends and family. It might be words of encouragement, or a shoulder to cry on, or someone to listen to my fears, concerns and anxiety, or someone to help me keep everything in perspective and make me laugh or someone to take a walk.
The inspiration also comes from losing dear friends to blood cancers and wanting to keep on going in honour of their memory.
When a tragedy, challenge, hurdle, crisis, adversity arises in our lives, our friends rally around us to offer help and support. However, at one point, life goes on and people resume their daily lives, which is normal and healthy. The true testament of a friend’s love and dedication is tested when the challenge becomes long-term and our friends are still there, with their continued offers of help and support.
My journey has definitely shown me my true friends. After a long year from the start of my roller-coaster ride of a lifetime, and they’re all still here for me, present as ever, ‘showing up’ when I need them the most. How blessed I am to have these people in my life. I’ve said it before and it bears repeating, it’s the people around you that gives you the inspiration to keep on going and pushing through. I am single, no children, live alone and need to do most things for and by myself, however, I am not alone through this journey. I have
an amazing bunch of friends, family, and colleagues here to support me.
They have been there for me to offer much-needed assistance when I didn’t have enough energy to do things for myself while going through chemo, when hospitalized in isolation for a month, during my stem-cell transplant and when I was discharged post-transplant. They brought me groceries (well actually helping me get groceries as I was too stubborn to have someone else do it without me – it’s called not being able to let go – I’m a control maniac! – thanks Monika for coming with me while I’m wearing a hospital mask, gloves and looking like a freak!); preparing food, bringing ginger ale (I lived off ginger ale and anything ginger while I was constantly nauseous for about 8 months); cleaning (thanks to my office for paying for a cleaning service); doing my house chores, chopping food and bringing me crystallized ginger and ginger tea (all the way from Chinatown because it’s
the only one that worked that I liked – thanks Janice).
They have been at the hospital to check up on me, keep me company, and bring me treats (sometimes provided by my favourite neighbourhood coffee shop who believe it or not is also part of my support system); essentials to make my daily ‘hospital’ life more manageable (a fuzzy warm blanket – thanks Kyla) to keep me warm during my bone-chilling rigor phases and provide me with a hug when no one was allowed to hug me; a kettle (thanks Anita) for my room when I wasn’t allowed to leave it so I could have tea and coffee when I wanted it; crackers, snacks, popsicles, fresh fruit (thanks to my colleagues) so I could always have a stash at hand. Some brought me movies and comic relief which was much-needed, along with bottled water from Quebec – just because it was from Quebec (thanks Dave); and of course the coffee runs when I craved a latté, an Americano Misto (thanks Miriam), or a Tim Horton (thanks to my hospital roommate’s mom). My brother, while in town, was with me every single day to keep me company, make me comfort food and go for french-fries the few times I craved them.
I am grateful for all the hats I received from friends and colleagues because I didn’t want to wear a wig and my scarves were too cold for winter, even Vancouver winters. The various baskets of goodies I’ve received from my colleagues along with innumerable cards (all of which I still display on my desk and re-read their encouraging notes constantly). And for Joan, my dear colleague who came to be with my brother and I during the transplant itself because I wanted her nurturing presence there with me.
My friend Monika (whom my brother and I made an honorary sister) had the more onerous task of being my emergency person here in Vancouver (since my brother lives on the other side of this vast country of ours) and be the ‘it’ person to take care of business should things go south as well as take care of my bills while I was hospitalized. These logistical conversations are essential to have but not necessarily an easy position for a friend to be in. Thankfully Monika is also a life coach and fortunately/unfortunately has
experience with grief management from her own personal experiences. She is also the one who came with me for doctor’s appointments when I was scared of what that visit would divulge and didn’t want to be alone. She has been instrumental in helping me remain sane by being able to talk with her freely about the possibility of dying.
Encouragement is always welcome, but it’s a fine line between offering positive cheerleading support and not wanting to hear the truth of the matter that death is a huge possibility we are confronted with and we need to come to terms with that. We need to be able to talk about it. Death is as much a part of this journey as staying strong through it all. Acknowledging the possibility of death is not a sign of giving up. When I was told I had 5 months without treatment, or a maximum of 2 years with only chemo, and that a transplant might save my life, but I could also die from it, are all things we need to be able
to discuss with our support team. It’s our reality.
You can’t just sweep everything under the rug, say “I just know everything will be all right” when in fact, there’s no guarantee of that. The doctors can’t promise that, I don’t know it for a fact, and no one ‘feels it’ for sure. I’m not too crazy about blanket statements. I much rather hear “I’m here for you; you can talk to me; I love you and support you; I send you strength; one step at a time.” I need to remain realistic while being hopeful for the best. False hope and disappointments are the worst. I have to deal with the emotions associated with losing friends to the same disease that threatens me. I need to feel free and safe to express my feelings.
Even now, 8 months post-transplant, there is still a chance that I might get an infection and things take a turn downwards (of course, so far so good, and I am optimistically hopeful that it will remain good for a long time). Heck, I’m dealing with chronic GVHD when I thought it would be all uphill from now on – I’ve adjusted and dealing with it. Yes, I am doing great, in fact, all-things considered, I am thriving, but I need to remember that there are chances that it will come back down the road (I hope not). Perhaps in a few months, a year, or two, or years from now, but there is a 50% chance of recurrence
because of the disease complications I’ve had. The transplant is a management tool we hope will extend my life beyond the initial poor prognostic and the hope is that with luck on my side, I’ll have years ahead of me.
Last weekend, as I was amazingly celebrating my birthday with my friends (I was so giddy at being here, able to celebrate my birthday, I was bouncing off the walls! OK, perhaps the extreme amount of caffeine and sugar had something to do with this as well, but for the most part, it was pure adrenaline of excitement at being alive and being surrounded by most of my friends). I realized how lucky I was to have these amazing people around me. I took a moment to think about each one of them, and acknowledge their incredible
contribution throughout this journey. I could not have done it without them.
Naturally, the same goes for my friends and family that live across the country, and the international ones, of course, unable to be with me in person. Their availability, love and support they provide by sending me emails, messages, cards, (and tea – thanks Alex F.) and phoning is meaningful and of great value to me, including sage and wise advice and exercise tips from my best friend Lynn in Montreal who happens to be a personal trainer and my longest friend. In this world of technology and social media, it has become so
easy to reach out across vast distances and keep in touch with someone.
I was diagnosed 2 years ago, but publicly disclosed it only last year as the disease was progressing and urgent measures were becoming necessary. It was time to ‘come out’ and tell people what I was going through. I knew that I’d want to know if one of my friends was going through something like this, and at the same time, I realized that telling people would also benefit me in gathering more moral support (which is the most crucial thing we need to keep us going). So I chose to make it public on my Facebook.
Facebook allowed me to reconnect with long-lost friends from various different times of my life and these new-found connections with old friends have become an important part of my support system as well. Life might have taken us in different directions over the years but here they are again, offering me virtual hugs, support and love, along with laughter. One of the most unexpected benefit of social media is to also get a glimpse of people’s daily lives, reminding me that life goes on outside the ‘soap opera’ which my
life resembles at times. I enjoy seeing photos of my friends and their family, enjoying life.
Social media and the internet has also made me connect with other patients/survivors and we are able to offer each other support, commiserate and laugh through it all. That in itself is invaluable. Connecting with someone who can relate allows us to realize our feelings and emotions are natural and we remind each other to take it one step at a time.
The same can be said of my work colleagues. Again, I have said this many times before, but I work with some of the most amazing people ever. Just imagine if you will, a relatively small office of about 20 people, roughly made up of 2 teams (Professional Development and Operations), and 2 people out of 20, one from each team, has CLL! Really? How weird is that? Chances of having 10% of your staff with not only cancer, but leukemia, and at that, the same type of leukemia, and being off doing chemo and having a stem cell transplant around the same time is mind-boggling! So here’s the entire office having to
reshuffle, take on extra duties to make up for Lynn’s and my absence, while going through the emotional upheaval of having friends they work with going through a life-threatening situation.
Naturally, the fact that unfortunately our friend and colleague Lynn lost her battle while here I am, doing well, is bittersweet for everyone, to say the least. Everyone is devastated at losing Lynn for she was such an amazing woman, friend and colleague, and such a huge part of the organization. Her loss leaves a huge void at the office. And yet, I know they are excited for me. Every time I go for a visit, they still make me feel part of the team, they still cheer me on, and offer me help and support every which way they can – after a whole year
of being absent and still without a specific return date.
Our CEO is constantly making sure I’m doing well on my healing journey and that I lack for nothing. The constant show of support is phenomenal from everyone. It’s not like someone on mat leave where they have a specific return date. My back to work date will be determined when my body is done dealing with all the complications and is strong enough to handle being in public on a daily basis and I look human again. As an employer, trying to manage that type of unknown with people hired on contract to replace you must be a managerial nightmare. But all I get from them is “Get well and you’ll be back when you’re
ready”. How many organizations do that for people in similar situations?
My BMT medical team is incredible and have all the patience in the world dealing with my constantly asking the same questions over and over because my brain can’t register the information they tell me the first ten times they say it. The BC/Yukon chapter of the Leukemia & Lymphoma Society staff have been so phenomenal in offering support, resources, information, symposium with phenomenal specialists, peer support groups and activities to help me get everything I need to deal with this journey, every step of the way.
I have also made new friends that happen to live near me and will call me up out of the blue to go for a walk which gets me out of the house, exercising and socializing. One of them is a friend I’ve known for a few years but we have recently reconnected. The strange thing is, she happened to be the physio therapist on the BMT unit while I was there for my transplant. Again, how fortuitous is that? Not only did we meet years ago, but our paths were crossing again during this time of need.
So, a quick run overview of my friends:
Lynn V., sister-friend, wise woman and a personal trainer
Monika (honorary sister and one of my best friend), my emergency
person, emotional sound board, personal coach, sitting, walking and hiking
Anita (colleague and friend), very no-nonsense, pragmatic, who reads
between the lines, hears what I say and solves issues (kettle, scarves,
outtings, coffee, snacks)
Miriam (accountant and movie buff) my coffee, treat and kits beach
walking buddy and my personal supplier of yoga and pilates DVDs
Susan M. (neighbourhood friend), BMT physio therapist and walking
Annemarie (neighbourhood friend) and Hawaii-addict like me, into
Janice, also a sister-friend and raw food chef and nutritionist
Dave, laughing buddy and very good friend (for the past 11 yrs) with
the same warped sense of humour as me
Dr. Fruthaler, a retired physician living in New Orleans, whom I’ve known for years through working at Rocky Mountaineer for having planned and booked him and his wife’s holidays with us multiple times. Get this, he happens to be a former Secretary Treasurer of the American Board of Pediatrics, whose student and resident was the illustrious Dr. Max Cooper who was amongst the first to research immunology pertaining to B Cell lymphocyte differentiation defects in immunodeficiency diseases and lymphoid malignancies, and develop the bone marrow transplant program. (I was diagnosed with B Cell Chronic Lymphocytic Leukemia. Again, coincidence that I am friends with someone
connected with this person?) And we share a love of the great outdoors, National Parks, especially Hawaii and photography. He’s like a grandfather to me, one who can actually understand my medical lingo.
So honestly, look at this list of friends, see who they are and what they do, and tell me that people are not put on your path for a reason? Could I surround myself with better people? I think not.
And of course, every family member and other friends, near and far, constantly sending me hugs, love, strength, support, encouragement and jokes.
I believe things happen for a reason and people are placed in your life because of what you can learn from them and what they can bring to your journey. I am surrounded by the best people ever and for that, I am forever grateful and feel very blessed.