In November 2019, I got my second stem cell transplant and Munira Version 3.0 was born.
And Munira Version 3.0 was on fire. I wrote a book, travelled extensively, worked, and embraced my role as a grandmother to two little ones. Life has been a whirlwind of living fully and fearlessly, with intention. Until now.
In the past couple of months, multiple myeloma has slowly been making its presence known and now has officially resurfaced, raging in my body. This second relapse was entirely predictable as myeloma is not yet a curable cancer. Someone asked me recently what myeloma is. It is the cancer of the plasma cells in the bone marrow. The bone marrow is where our red blood cells, white blood cells and platelets are created. Just like red blood cells are needed for oxygen and energy, and platelets help prevent clotting, white cells are the defence mechanism against infections and viruses. Plasma cells are a type of white cells. Myeloma is like an unwelcome guest that turns the plasma cells cancerous, so that they grow uncontrollably and invade the bone marrow with impunity. It prevents the red blood cells, white blood cells and platelets from doing their work. The way myeloma manifests for me is it creates chaos in my system as my hemoglobin drops considerably, infections compound and multiply, and fatigue is like a blanket that I wear reluctantly. My oncologist wanted me to start treatment immediately but my weeks-long cold turned out to be pneumonia, so I have to deal with that first.
And treatment starts next week, on December 14th. For the first two myeloma treatments, I went through chemotherapy and stem cell transplant. Thankfully, there are many more treatment options now than existed 10 years ago, when I was first diagnosed. The treatment I will be on is based on immunotherapy, known as DRD (Daratumamab, Revlimid and Dexamethasone).
Daratumabab, which was officially approved by Health Canada in 2016 and made available by Ontario in 2018, is a type of targeted cancer drug called a monoclonal antibody (MAB). It is a smart, sneaky drug that recognizes the myeloma cells, quickly informs the immune system, which in turn attacks and kills the cancer cells.
Revlimid is an immune-modulating drug, which stops the growth of cancer cells. It is standard treatment for myeloma maintenance. It is not exactly chemotherapy, although I understand from friends who are on this drug that the side-effects resemble those of chemotherapy.
And then there is Dexamethasone (Dexa), which is a steroid used to reduce inflammation It gives me energy and makes me feel like a superwoman until I come crashing down. I have a love-hate relationship with Dexa. Nagib has a hate-hate relationship with Dexa because he has witnessed me doing crazy things on Dexa, including vacuuming the entire house at 3 am in the morning, and buying everything that shows up on late night TV (…and if you order in the next 20 minutes, you will get a second frying pan for free. Operators are standing by.).
The treatment regimen is quite precise. For the first two months, I will be in the hospital once a week to get DRD. And then from months three to six, I will have to go to the hospital once every two weeks. After that, I will receive DRD once a month. If this treatment works, it should give me 44 months of Progression Free Survival (PFS), which is almost 4 years of life. I will happily take it! And after that time, there is the possibility of clinical trials and exciting new discoveries like, CAR-T, which involves extracting the patient’s T-cells, reprogramming the DNA in a lab, and transfusing them back into the body to recognize and kill cancer cells. (Space age stuff, for sure).
So how am I feeling? A little overwhelmed at starting treatment again after 3 years. A little excited to try this promising treatment. And mostly hopeful and optimistic that DRD will once again knock down the cancer and allow my body to heal. To give my body a fighting chance, I have decided to take a year off work to focus on self-care. I am not good about resting and I don’t know how not to work, so this will be an interesting year. I will think of it as a sabbatical, a time to take a pause from the busyness of life.
Some of the immediate things I want to do is spend oodles and oodles of time with Amaal and Mos. I want to expose them to Dr. Seuss and baseball and magic castles and Christmas songs. I plan to watch many Hallmark Christmas movies and binge on all the Star Wars movies and spin-offs on Disney. I want to spend time with family and friends and read books. I want to learn how to make cinnamon rolls and poke bowls. I want to meditate more and walk 10,000 steps a day. Cleaning the garage while I am on Dexa is sounding like a great project (I can already see Nagib roll his eyes!). I literally can’t wait to see what is possible for me in 2023. Let the adventure begin!
42 responses to “The Next Chapter”
Praying for you and thinking about you
Love hearing from you Nadya!
Dearest Munira, If there is anyone who can beat this – it is you! You are one of the strongest and most inspirational of women that we know! Wishing you ground-breaking results and a quick recovery on this next journey; and lots of fun and amazing memories with your grandchildren. All the best!
I love the idea of ground-breaking results and fun and amazing memories with the grandkids. Thank you!
Dear Munira,
I am so sorry to hear this news.
You have many reasons to feel optimistic as you continue your cancer journey, but it is not an easy one. Family, friends, your religion, the medical profession will all support & help you through this new phase. And your courage and spirit will lift you up on the especially hard days.
Until we meet again, I wish you only the best results,
Patricia
Thanks Patricia – – Today is a heavy day for me. Just trying to process and be ready for treatment next tuesday. I am so hoping that my body will embrace DRD…Hope you’re doing well Patricia.
Dearest Mukhianima,
I’m so sorry to hear this news, and happy that you are such a positive human being – don’t know how you do it!
We pray for your good health and happiness. And we pray that you will quickly sail through this phase of your life without any problems, and come out of it even stronger.
Remember, if we can help in any small way, we are just a phone call away.
Shamim & Zul
Ya Ali Shamim — Not feeling very strong today. But tomorrow is a brand new day and the sun will rise as it always does. Thank you for your offer to help, so appreciated.
Munira – may the positive energy of the creation be with you. May the light of the Almighty shine on you and help you overcome these challenges. Like the goldsmith looks at the most malleable material, Allah seems to favour you and therefore will always be by your side.
Now that’s a comment! I have never considered myself as malleable, but i suppose this journey has taught me to adapt and accept God’s will. Your words are so comforting…
I love your eternal optimism, Munira! I know that your experience has not, and will not be an easy road, as I have had the opportunity to speak to a few patients on DRD at the cancer centre where I work part-time. Your attitude and zest for life is inspiring and I continue to be one of your cheerleaders 🙂
Hi Nita – – Day 1 was really good. I am visualizing my body embracing the DRD, falling madly in love with each other and living in harmony! If subsequent treatments go as well, that would be a blessing. It only been two days so I am cautiously optimistic.
Munira we pray that you have the determination and strength to go through your treatment and speedy ❤️🩹
Amen for your prayers for a speedy recovery…..
Munira Mukhiaima,
Our best prayers is with you for your fast recovery and pray that you come out clean again in this battle, we all are with you and just a phone call away if you require any kind of help
I was so thrilled to speak to you last week and hear about your commitment to give blood. You can so do this! I promise to call you if I need help….
My dearest Munira. So sorry to hear this, but I know you will win this battle as well. While on DEXA, call me. I’ll come by with a crate of oranges and a plate of Pilau. I’m only a phone call away. Heck, call at anytime. You’ve got this!
Oranges and akni sounds divine. I promise to hold you to this! Miss you Naznin. Have not seen you in a very long time.
Prayers for Speedy Recovery and Mushkil Asan.You are a strong woman .. let the adventures begin.
Lots of Hugs and Prayers
Muizz Nagji
Let the adventure begin!
Munira, heaps of positive vibes come your way. Love your positivity and can -do attitude. It reminds me of my Mum’s approach to her treatments over 20 years ago. You are an inspiration. May this year bring you reset and recharge and tons of love, laughter and hugs! Will be thinking of you throughout.
Such hopeful, inspirational, heartfelt words Noor. Ok, I will focus on resent and recharge. Maybe those are my words for 2023.
Heartfelt best wishes.
K.Amersi
K. Amersi. I so love hearing from you. Thank you for your heartfelt wishes. And come visit us soon!
Munira I wish you the best of luck and prayers to ease all your burdens. You are a very strong person and I am sure you will pull through the treatment.
Thank you for your encouragement Nermin. I learn from you – the best!
Thank you for sharing the information about multiple myeloma and the current treatment options. Amazing news. Wishing you a speedy recovery and continued strength on this adventure.
Shirley – – I think a cure is imminent – in the next 10 years. The amount of research and what I am learning about how different countries are managing myeloma blows my mind. Some countries are treating this while it is in the smouldering stage, others are going straight to immunotherapy, others are starting with CAR-T. Something has got to click with the international community working on a cure……
Oh my!!! Munira Mukhiani, sending you lots of love, hugs, well wishes, and prayers for your quick recovery, return to good health and Mushkil Asaan. We are with you on this journey and know that you can count on our combined strength and support. We are confident that you are going to beat this one and be able to be the winner that you are. Love and Hugs from Anis & Naj
I will never forget your incredible support when I was going through the outpatient stem cell transplant. You were compassionate and so generous with your time and knowledge. The adventure continues!
Wow, wow and wow! You are so amazing in your generosity of spirit, determination and compassion. What a wonderful model you are to us all for your faith in hope. You manifest your positive energy throughout your journey. Sending warm hugs and much love,
Suzanne
I so love you Suzanne!
The very best of prayers! May “The Force” remain with you, always!!
So one of the things I hope to binge on are all the Star Wars movies and feel that force while i am on dexa! I love when you send me this quote!
Munira, you will make this an exciting adventure especially the plans you have for being with Amal and Mos. Family and friends will join you on this adventure – you know we are here for you xoxoxo.
Hi Barb! Looking forward to spending lots of time with you!
Mukhianima, You are a strong person, we are praying for good health and speedy recovery and Mushkil Asan and Thank you for all your Khidmat.
Mukhisaheb. Your prayers and support has carried me through some tough times. And your khidmat is exemplary!
Always sending you lots of prayers for health and fulfilment, Mukhianisaheba!
And here’s a cinnamon bun recipe I just recently tried that is easy and soooooooooo good: https://smittenkitchen.com/2009/04/cinnamon-swirl-buns-so-much-news/
You can do it! (Both the cinnamon buns and the treatment!)
Dearest Jehan – Making your cinnabon buns on christmas eve. Thank you so much for taking the time to write when there is so much going on in your life. Would love to hear what you are up to. Its been too long since we’ve chatted,
My dearest Munira. So sorry to hear this, but happy to hear, that as usual, you’re going to face this setback with your usual vigour. When you’re on Dex, let me know, I’ll come by with a crate of oranges that you can peel and eat. Pilau on the stove too. Whatever you need to fill any cravings. I’m only a phone call away. Godspeed.
You got it! Perhaps you should teach me how to make akni like you make it. I can get the oranges. So much time, so many things to do and learn…..