Toronto, December 20, 2022 – After 3 years of the myeloma behaving, I relapsed and the cancer came back raging in November. And today, Nagib and I found ourselves back at The Princess Margaret Cancer Centre (PMCC) on the 4th Floor that we associate as the Chemo Floor. It felt strange and familiar at the same time.
It started with the medication that precedes the treatment. You know that sign you sometimes see on the streets of Toronto in the winter when you are trying to park your car? The one that says something like, no parking during certain times, parking only with a permit, no parking on one side of the street between November and April, etc. That’s how I am feeling about my new medication regimen. There is medication I have to take two days before treatment, medication to take the day off and the next day of treatment, medication for 3 weeks on and 1 week off (Revlimid), medication to be taken with food, medication only available at the Hospital pharmacy because it requires special care. Medication to protect the stomach, to prevent viral infections and to prevent blood cots. It’s going to take a few weeks to figure this out using the excellent calendar that PMCC prepared for us.
Today was Day 1 of treatment. The past two weeks have felt “heavy” and I found myself feeling a lot of emotions – sadness, loss, excitement, uncertainty, teary-eyed, hopeful, ready. I allowed myself to feel and express all these emotions as I prepared for this new chapter in my life. My daughter Sabrina, Afzal and Amaal surprised us by visiting the day before treatment and bringing a thoughtful basket of goodies – a robe, socks, hot chocolate, a mexican blanket and a hope container.
The part I loved most about my treatment was that the Daratumabab (Dara), the smart immunotherapy, was administered to me subcutaneously (Sub-Q) as an injection in my stomach. In the past, this treatment was only covered if it was administered through an IV. For me, that would have meant getting a PICC line as my veins are hard to find, staying in the hospital for many hours while the IV went through my body, and grappling with infections and inflammations. Getting this drug through Sub-Q means I can be in and out of hospital in two hours and not have to deal with many pokes to find my mischievous veins. Unfortunately, I did get a small reaction from the Dara today. The injection site got very red and the redness spread through my abdomen. I was given Benadryl by IV (one poke!) to resolve this issue and slept for a couple of hours while listening to Rachel Maddow’s podcast. Today I also started Dexa and am feeling beyond energized right now (I wrote this post at 1:58 am!). I could not have functioned today without Nagib. He held my hand, stayed by my side as much as he could (even though he was not allowed to be there due to COVID rules), managed my medication, stopped by on our way home to pick up a Greek souvlaki on pita bread to make my tummy happy (dexa makes you hungry). I love this guy!
One unfortunate piece of news we received is that our Insurance does not cover Revlimid so we have to use the Trillium program which is income-tested. We will be out-of-pocket some $11,000 for the year. But when we put things in perspective, the cost is only a fraction of what the total cost of treatment for Dara, Revlimid and other meds.
Tomorrow, we welcome Shayne, Cherrelle and Mos to Toronto. In the next couple of days we have plans for tobogganing, tree trimming, hot chocolates, long conversations, winter fairs, snowball fights, family and friends, a two-day cottage get-away and heartwarming hugs with them and with Sabrina, Afzal and Amaal. I am anticipating that it is going to be a crazy, wonderful time of togetherness. My heart is feeling so full right now. Day 1 of treatment is behind me and I am feeling ready to tackle this phase of the journey with a huge dose of hope.
30 responses to “Day 1 Treatment”
Dear Mukhiani Maa,
Our prayers are with you. We love you.
Yasmin and Nazir Dossa
P.S. Remember “The Fight Song”.
Yasmin Dossa — It was so good to see you from afar last week in khane. Yes, I have the Fight Song on my Spotify favourite list. Thank you for introducing me to it.
Dear Munira
I know the Iron Lady who can handle this with a smile and that is you. We got your back, Munira, always cheering for you.
Davinder from Sanofi
I can almost visualize you saying “Iron Lady”. I love it. Thanks!
Munira “you got this” as Sabrina said. You are an amazing, courageous and inspirational human being. A beacon to many of us. Take care and virtual hug as you go through your new journey.
Shamira. Thank you so much for your inspiring note. I will look forward to seeing you in khane tomorrow. Sending you positive thoughts and good wishes
Munira, Munira, Munira … you are always such a beacon of light & hope for others. Let us be that light and hope for you now. Sending out white-light-healing-vibrations into the universe for you. You are a true fighter and I know you are always up for a challenge. You show us all how this is done … with grace and dignity. Feel all of the feels but remember who is da boss … we love you with every fibre in our beings, special lady. Keep up that beautiful fighting spirit. Lots & lots of love being sent you way xoxoxo Cindy
Dearest Cindy – – I have thought of you so often. You are one of the most extraordinary people I know. Your commitment and perseverance to make a difference in the lives of people with myeloma is simply remarkable. I so missed not seeing you at the walk this summer. It didn’t feel the same without you. I am inspired by you. I see your fighting spirit and I send you prayers for love, joy and beauty every day in your life. We need more people like you in the world. Thank you for being you. Happy holidays!
Munira, you have everything in you to get through this. You are one of the strongest lady that I know. Sending you healing thoughts and prayers. Enjoy the family. ❤️
What a beautiful note May. Thank you! And I am loving being the little ones. Its a circus in our family! Happy holidays!
Keeping you in my prayers and close to my heart! I know you have it in you to get through this regimen – you’ve proven it over and over! Enjoy your family time and give everyone hugs for me!❤️
Dearest Anny – – I so love you! Thank you for keeping me close to your heart. You have a big heart. Loving the time with the family, as I know you are as well. I remember coming to your home for christmas celebrations almost 40 years ago. I don’t know anyone who enjoys christmas as much as you do! Breakfast to celebrate our birthdays in January?
Munira, your grace, strength and your indomitable spirit are awe inspiring. Sending you lots of healing wishes for this next journey. Thank you for sharing and letting us cheer you on. Hugs.
Thank you for cheering me on Noor. I’m embracing this new treatment with hope and faith….
Munira,
I’m thinking of you always. Takes me back to my 2nd SCT back in February. You’re such an inspiration!!! 💕💕💕💕
David
David Young! Your message took me back to that time too. Thanks so much for reconnecting. How are you doing?
Munira, Sabrina said it all, you have everything within you and everyone around you to get through this. You have already shown the world that your hope, faith, positivity and determination have proven to be effective. Stay the course and lean in to everyone who is here to support you. Have an amazingly fun time with your family and friends on your 2 day get-away in a winter wonderland. Thanks for sharing your story, so we can in return send our love and prayers your way. Love to you and your family.
Barb – – As i was reflecting on your words it made me stop and think. Sharing my story has been so helpful for me. In return I get so much more – love, prayers, community, humanity. Feeling incredibly blessed.
Heartfelt prayers go your way, Munira. Wishing you and family auspiciousness in the year ahead.
Thank you for your prayers of family auspiciousness Mukhi!
Prayers for Mushkil Asaan and complete recovery.
May Mowla always protect you and bless you in every way. Ameen 🤲
Stay safe and remain positive with courage and strength.
I am so touched by your words Nargis. Ameen for all your prayers and loving thoughts
Thank you for your post, Munira. I’ve added your blog to my bookmarks so I can keep updated on your treatment and your adventures (for your “Dex in the City” days!) without bugging you. Have a glorious time with your family and know that like that like the oversized sweater all of your friends, family and followers are wrapping you with love and prayers–Ameen.
Dearest Leila. Feeling wrapped with love and prayers. Thank you for being so significant, so integral to my life….
YAM Mukhianima, Our prayers are with you for good health, speedy recovery, spiritual strength and Mushkil Assan and Thank you for all your Khidmat Ameen
Amen mukhisaheb and mukhianima. Your prayers are very welcome at this time.
Love you, Munira and I hope the togetherness in these next weeks is sublime!
You know that a big part of the next few weeks will be reading My Momma wants to Eat Me Up. We know all the words by heart!
Munira – you are the most positive person I know. Your positive vibes resonate across your family. May the Almighty shower you with love, peace, happiness and best of all return to good health. You are an inspiration to all. Prayers for strength, courage, fortitude and patience. You will get through this with flying colours
So grateful for your kind words. I don’t see what you see but am extremely appreciative of your prayers Yasmin.