September 2023 Is Blood Cancer Awareness Month
September 2023 is Blood Cancer Awareness Month and a chance to share vital information to inspire change in the fight against blood cancers. The 3 major blood cancers are multiple myeloma, leukemia and lymphoma. Myeloma accounts for 19% of blood cancer diagnoses each year. Lymphoma, around 48% and Leukemia, around 33%. 12 years ago, I was diagnosed with two of these blood cancers; stage 3 multiple myeloma and stage 4 non-Hodgkin lymphoma. I am in remission from the aggressive lymphoma; however, continue to battle myeloma.
Myeloma is an incurable cancer. I remember the first time I was told I had multiple myeloma at Toronto General Hospital. I had never heard of this cancer and my husband and I immediately went on google to learn more about it. The information was dim and dire. We decided that Google did not have a medical degree and that we needed to wait until we met an oncologist to understand the disease better.
So what is myeloma? It is a rare blood cancer. It is the cancer of the plasma cells within the bone marrow Plasma cells make antibodies to help fight infection. When you have myeloma, the plasma cells become cancerous. The cancer cells crowd out healthy blood cells. Rather than make helpful antibodies to fight infections, the cancer cells make proteins that that can cause problems with blood cell production, the bones and kidneys.
Every day, 11 Canadians are diagnosed with myeloma.
The causes of myeloma are unknown. The symptoms of myeloma generally fall into four categories, known as CRAB:
- Too much Calcium in the blood
- Renal (kidney) failure
- Anemia (low blood counts)
- Bone disease (pain, increased risk of fractures – especially in the spine, hip bones, upper arms and ribs).
If you have one or more of these symptoms, speak to your doctor. Have them do the necessary blood tests. Early detection can make all the difference and allows for more treatment options.
When I was diagnosed with myeloma in 2012, the expected progression-free survival was about 2 years. The treatment was limited to chemotherapy and stem cell transplants. Now there are new-generation treatments being researched and approved, that have improved survival rates significantly. These include promising immunotherapy drugs, bi-specific antibody treatment and CAR-T. I am currently on an immunotherapy for myeloma, after receiving 2 stem cell transplants, one in 2012 and the other in 2019 when I had a relapse. Blood cancer is a serious condition but you can lead a full, healthy life after diagnoses. It is an exciting and hopeful time for research and I believe that a cure for myeloma is imminent and will happen during my lifetime.
#ThisIsBloodCancer; #BloodCancer; #SayBloodCancer; #bloodcancerawarenessmonth; #bloodcancerawareness;
It’s a Fine Line…
One of the highlights we were anticipating all year was going to Nairobi for 6 weeks to spend time with our son, Shayne, his wife, Cherrelle, and their children, Mos Malik and Robi Rakim. The bonus was that our daughter, Sabrina, and her family were also going to come with us to Nairobi. So this was our time to be with family, play with our grandkids and take time to enjoy the sights and sounds of Nairobi. Except I got incredibly sick while in Nairobi. It started with a stubborn cold and cough that escalated into shortness of breath. I went to the hospital and they determined that there was no infection. But the stubborn symptoms continued and soon I had severe pain in my eyes and my eyesight got blurry. Another visit to a doctor and an ophthalmologist diagnosed a bacterial infection in my eye along with significantly scratched corneas. She treated me aggressively and slowly the pain and discomfort reduced. Throughout this time, I just felt exhausted due to extreme fatigue. I could not eat and started to lose weight. As a result, I needed help with balance and walking. I also found that, after many years, I experienced chemo brain.
My family was extremely concerned. They kept asking me if this is how I live generally, and I had to say that this is not the quality of my life. In spite of feeling poorly for most of the trip, I showed up and participated in every activity – from a visit to Watamu and Mombasa on the coast, to visiting The Giraffe Centre and having lunches at Hashmi’s and Art Caffe. Nagib and I looked after Mos, Robi and Amaal. We participated in long, juicy conversations with the family. But practically every day, I had to focus on self-care and put myself first. This meant sometimes going to bed at 7:30 pm. Sometimes it meant sleeping in. My family was extremely kind in giving me the space I needed to remove my superwoman cape and use the cape as a blanket to rest.
The day after I got back to Toronto, I had an appointment with my oncologist at The Princess Margaret. They had me do an X-Ray and CT scan and I was diagnosed with pneumonia and a lung infection. They also found that my hemoglobin had dropped considerably, which explains the fatigue. This week, I had a transfusion of two units of blood. And the very next day, I facilitated a brilliant leadership session for a client. Sometimes I astound myself. And sometimes I wonder if I am insane. It’s a fine line between insanity and astounding!
Next week, I am off to Vancouver for 2 weeks to co-facilitate a leadership program with my colleague. It is something I am excited to do and literally can’t wait to get on the plane. Nagib and Sabrina are shaking their heads. They want me to rest up, take care of myself. And while I know they mean well, I must follow my passion for doing what I love to do with clients and colleagues that matter. It is a fine line between amazing and madness.
Cancer is a funny beast. There is no rule book on how you are to be or act as a cancer patient. It is easy to play the victim card (which I did when I was first diagnosed). Somewhere, along the way, I decided that I was not going to let cancer define me. I was going to accept the diagnosis and move forward in spite of it. Over the years, this has served me well. I am sitting in gratitude that in spite of having 3 advanced cancers in 5 years, I live my life from a place of joy and hope. It’s a fine line that I tread everyday.
All I did was play
All I did was play
Amaal Noor Habib, my granddaughter, is two and starting to speak in sentences. And one of our most enjoyable activities is having a conversation with her. Yesterday, she saw me on my laptop and said, “Nima, you working?” And I said, “Nima is working!”.
“Did Amaal work today?” I asked. She said, “No, Amaal play in school”. To put things in context, Amaal goes to a daycare from 8 am to 4:30 pm, so it’s a full day for her.
And at school there is a plethora of activities, from playing with blocks and sand and clay, to finger painting, to reading books. They learn to dance, to share, to play fair, to wash hands, to take a nap, to discover new food. That’s a lot of working, except Amaal sees this as play. Periodically, Amaal is evaluated against a scale to determine her progress – can she wear her shoes by herself? Can she point to things in a book when asked to find them? Can she point to at least two body parts? etc. It is like a performance review.
Over the past few weeks that we are in Nairobi, Amaal has been going to Mos’s school and it is a whole new experience of learning through play. They bake cookies and mandazi and get to eat what they make. They ride bicycles. They garden. They play with animals. They pick tomatoes. Today is swimming day. When I watch Mos with his Lego blocks or Play-doh, I find he is utterly absorbed in what he is doing. Occasionally I hear an “Oh,oh, almost falling”, when he puts a big Lego block over a small piece. There is no judgement, just fresh eyes, figuring out combinations, being broad and imaginative and willingness to take a risk.
In my coaching practice, I talk to people who are exhausted and burnt out, not having a lot of fun. Work for them has become intense and all-encompassing. The expectation (sometimes self-imposed) is to hustle, to push themselves beyond their limit, to prioritize work over everything else, to see play as guilt. The notion is that everything will be better when they have completed the work and achieved their targets. But surely, the quality of the journey is as important as the outcome.
It got me thinking about what life would be like for us if we approached our work with a sense of play. If somehow we could balance work with play, understanding that recovery and renewal is an essential part of performing well at work.
I have discovered a powerful way to bring play into my work. It is something I learned when I went on vacation to Portugal and was inspired by how people lived and how they prioritized family and children and laughter. I observed how large families – 15 to 20 people – would come together at nights at a table outside a restaurant, eating together, over many hours, laughing and playing. The food would be based on what they could afford, often just sardines and bread. I saw this happen on park benches, in makeshift areas overlooking the city. I kept thinking I want more of this. An indelible image from my time in Portugal was watching a couple on the rooftop of a home, talking and drinking wine.
So when I came back to Toronto, I decided to create a 2-hour vacation everyday, which my circumstances allow for. I take two hours each day to do something I enjoy. It could be calling up a friend for an impromptu lunch, inviting myself to my neighbour for a swim, taking a walk with Nagib in the ravine, baking a chicken pot pie for a friend, going to a coffee shop to read a book, calling up a friend for a long, delicious conversation. Small things, done intentionally, to make time to recharge. Basically what I have done is to create a life I don’t want to escape from.
Play is an attitude I believe we need to cultivate to give our best selves to the world. Some of my clients create icebreakers in meetings as a way to get to know each other better. Others have game rooms and coffee corners, even nap pods to encourage people to get away from work for a period of time.
When my kids were in kindergarten, I remember a poem that was read at their graduation. It was about parents asking their kids what they did at school, and the refrain was the kids saying to the parent, “All we did was play”. There is something beautiful and poignant about this, something we seem to have forgotten as we have gotten older, something my husband is re-discovering as he becomes a grandfather. So, whatever your stage in life, create play into your world. It may be the best thing you do!
All I did was play
The past 3 months have been a busy time for me. In addition to delivering several workshops, facilitating meetings, doing keynotes and business consulting, coaching managers, speaking at The Princess Margaret Journey to Conquer Cancer event, and being featured in a number of publications, my workload has been full. During this time, I have also noticed a decline in my stamina as my body takes more time to sustain a prolonged effort. I suspect this is due to the new immunotherapy treatment that my body is adjusting to after I relapsed for the second time from the ravages of Multiple Myeloma.
Sometimes the lack of stamina shows up when it take a little longer for me to complete a project. Sometimes it shows up in fatigue. Sometimes it means using notes when I didn’t need notes before. This is frustrating for me. It sucks that I have an incurable cancer. It is certainly not the life I would have chosen for myself. But I have accepted that this is what’s in store for me in this moment, and not fight or resist it. Early in my diagnoses, more than 11 years ago, I started asking a question that helped me decide how to respond to challenges I was facing with the diagnoses. The question was “How do I want to show up (in this moment, at this time, in this situation, with this person)?” This one question opens up the possibilities and gives me choices. Not showing up is not an option for me. Showing up, even if feels heavy, means making a small, intentional and conscious choice of how I respond in each moment and encounter. It allows me to bring agency to my life, when so much of my life is out of my control.
I ask this question when I feel attacked. I ask it when a request is made of me. I ask it when someone reaches out to me for help. I ask it when I am in a conflict situation. This one question helps me be present and do what makes sense in the moment. It means deciding what to let go because it won’t matter one year from now. It means setting boundaries when necessary about what I can and can’t do. It means making every effort to be present for what matters most. This one question focuses my attention and energy on taking that next step, intentionally and unapologetically.
Showing up sometimes requires a leap of faith to take that first step when you can’t see the staircase. It requires having trust in the process, choosing hope relentlessly and a whole dollop of courage. Showing up is not, as I have learnt, about apathy, giving up or becoming a victim. Rather it is about accepting where you are and acknowledging what is in this moment (whether you like it or not), and then choosing consciously how you want to respond. When I show up intentionally, flaws and all, I put much less pressure on trying to be perfect. This allows me to be present to experience and live life in the moment, trusting in the universe to give me what I need to be the best I can be in that moment. I have a colleague who asks a different question that helps her navigate how she shows up, particularly during difficult conversations. Her question is “How can I be of service to this person in this moment?” Questions we ask ourselves can be a powerful tool to help us move forward. What are some questions you ask yourself to help you navigate your path forward?
I have such gratitude that cancer has given me the space to experience how to keep going, to keep trying and to move forward. I know that accompanying the treatment, the uncertainty, the good days and bad, there is an endless grace. Grace to try again, to experiment and learn new things. Grace to come out the other side of pain stronger, better and wiser. Grace to see the message inside the mess. To make me stronger and prepare me for whatever lies ahead. All we need to do is to show up and let life open us up to whatever we are meant to learn here.
Feature image courtesy of Garcia Creative and The Princess Margaret Cancer Foundation.
Compassion Begins With You
Compassion Begins With You
This past week has been a tough one for me.
After tolerating my new immunotherapy treatment extremely well since December 2022, I started to feel a bit unwell. It started when I noticed that I was fatigued. Not tired or even merely exhausted, but fatigued – not wanting to engage, staying in bed without embracing the day as I normally would, just feeling yucky. Part of this was clinical – my white blood cells and neutrophils have dropped and the medication is expected to cause fatigue. Yesterday I experienced brain fog after many years.
All this was playing havoc with my emotions. I noticed that I was feeling deep sadness. I felt I was not able to keep up. I was feeling less relevant. I was beginning to say it’s too hard. I noticed that my level of adding value to society was diminishing, and that was very hard for me to accept. This time, rather than having a meeting with my mind, I reached out to Nagib to share what I was going through. He was able to offer me much needed perspective, reminding me of all the things that I was doing brilliantly, and how the treatment is actually working phenomenally well. It is exactly what I needed to hear to shift my mindset and reframe my attention.
This was a reminder to me that compassion is not how just about how we treat others. Compassion begins with us. It is how we treat ourselves when things are challenging. It is the message we send to ourselves when we are not at our best. That self-critical voice, that inner critic when we are sad or angry, can be painfully judgmental and can lead us into a horrible downward spiral. I find it curious that when a friend has a failure, messes up or makes a mistake, we find it within ourselves to be compassionate toward them (“these things happen”). Why is it that we have such a hard time being compassionate to ourselves? (“I’m such a failure”). Self-compassion is accepting our emotions. It is understanding that part of being human is understanding our own imperfections. It is knowing that we always have a choice. It is treating ourselves with gentleness and kindness, rather than judgment and self-criticism. The key is to recognize this early and have the supports in place so these don’t turn into major relapses. For me, it was being vulnerable enough to open up to Nagib. To his credit, he gave me the space to open up, really listened, held me tight, did not dismiss what I was feeling, did not give me advice or a lecture. Instead, he validated my emotions and offered much needed perspective and support. Exactly what I needed to find my way back to the light for now.
So I spent the week taking care of myself. Resting when I needed, trying to get stuff done when I was able, practicing gratitude and staying connected with people, rather than shutting them off. This gave me the energy to spend a fabulous Mother’s Day at the Rogers Centre and reconnecting with my friend Lynda after 6 years, and feeling like we had not missed a beat. And this week is shaping up to be a much better week where I feel like I am able to cope better.
I interviewed Katherine Jansen-Byrkit, author of River to Ocean: Living in the Flow of Wakefulness, on my podcast, Choosing Hope: Living Courageously Through Adversity. She talks about worthiness, about being enough. We live in a culture that defines worthiness in terms of social status, work, income, accomplishments. What if our worthiness came instead from a place of innate value and acceptance of who we are, just the way we are? What if our worthiness was not conditional and need not be earned? Before cancer, I defined myself very much by work and my worth was tied to it. It took me a long time and a few hard knocks from cancer to finally come to a place where I wake up most mornings feeling intrinsically worthy. I think that practicing self-compassion is accepting that we are intrinsically worthy and not having to prove ourselves every day (which can be exhausting). This is particularly important when life events like health issues or job losses or relationship changes, or aging, or not feeling comfortable in our body, can shake us to the core and make us question our worth. There is freedom in claiming our worth because it gives us the courage to deal with difficult situations from a place of worth and knowing we are enough and figuring out how we move forward constructively. Kathleen shares a poem by Nayyirah Waheed that captures the essence of intrinsic worth :
‘as you are.’ says the universe
‘after…’ you answer.
‘as you are.’ says the universe.
‘before…’ you answer.
‘as you are.’ says the universe.
‘when…’ you answer.
‘as you are.’ says the universe.
‘how….’ you answer.
‘as you are.’ says the universe.
‘why….’ you answer.
‘because you are happening now, right now, right at this moment and your happening is beautiful. the thing that both keeps me alive and brings me to my knees. you don’t even know how breathtaking you are; as you are.’ says the universe through the tears – as you are | you are the prayer.’
NEJMA – Nayyirah Waheed
So today is an ode to self-compassion, to intrinsic worth, to treating ourselves the way we would treat a best friend, of accepting our fallibility and imperfections and knowing that this is part of the human condition, of reaching out to trusted people who care about us when things get tough, of tackling difficult times from a place of hope and gratitude, of remembering that after every storm the sun always shines.