Saturday, July 27th at 1:30 p.m. marked yet another chapter in my Journey through and beyond cancer. I started treatment for relapse of Multiple Myeloma after 6+ years. I feel blessed to have benefitted such a long time from my previous stem cell transplant – the average period to relapse is approximately 3 to 3.5 years. As the coffee commercial used to say, “Good to the last drop”. Munira Version 2.0 was certainly “good to the last drop!”
I am so excited to start this treatment.
To recap, it was becoming evident in June of last year that the myeloma cells were starting to resurface from my bone marrow and into the bloodstream. Dr. Tiedemann shared this news with us and suggested that he monitor my situation more frequently than the 3-month check-ups I’ve been used to since 2012. This so that we can start treatment at the optimal time – “the sweet spot” as I’ve mentioned in a previous blog post. Fast forward to this past June, and Dr. Tiedemann suggested that the numbers warranted treatment. Here is how the conversation went:
Dr. Tiedemann: “The numbers warrant treatment. How are you feeling?”
Me: “Feeling pretty awesome!”
Dr. Tiedemann: “Ok, let’s monitor your bloodwork on a weekly basis. If anything changes and your condition worsens, you need to let me know immediately and we will get you on the chemo regimen.”
Me: “Sounds perfect” (big smile). In my head, I’m already making plans of how I am going to spend the month and maximize my time before commencing treatment.
And what a month I had! I met up with so many friends for breakfast, lunch and dinner. Nagib and I spent a wonderful weekend with Mary Gemmiti at her log cabin at Wasaga Beach. Mary and I got to know each other when her husband, Tony, was diagnosed with myeloma and lost his battle 5 years ago. Mary continues to be one of my favourite people and our time together was therapeutic, wholesome and productive – she shared with us her passion for scrapbooking and helped us create a work-in-progress masterpiece. Another weekend, we hosted more than 80 friends at our home for breakfast and it is a day that brought my heart so much happiness. During this time, I continued to honour client work and move volunteer projects forward.
Finally, in early July, I developed anemia (my hemoglobin dropped to 86 – which is low), I ended up in emergency with unstoppable bleeding from a cut lip, and I picked up a nasty sinus infection that knocked me down for three weeks. Unfortunately, I had to cancel a trip to Brockville to visit Dave & Lynda Cavanagh, friends forever. My latest bloodwork showed that my M-protein numbers had risen to 24.8 (which is really high) and I knew that the time had come.
Thursday, July 25th was an eventful day. Shayne arrived from Nairobi and we picked him up from the airport. Shortly after, we all headed downtown and met with Dr. Tiedemann. Very swiftly, we came to the conclusion that it was time to start treatment – and the sooner the better. So chemo was scheduled for two days later (a Saturday).
Given the short notice, on Friday, Nagib drove to Welland to pick up my prescriptions including an injection to increase my red blood cells. Although we are grateful for our Canadian health care system, all chemotherapy medicine (except one) is paid for by the patient. In one day, we exceeded the maximum for the year on our group insurance plan. This is a bit daunting.
The chemo experience today was so positive. I started the day working with Leila, another friend, on a volunteer project.
Then Shayne, Nagib and I went to The Danforth to have breakfast at a favourite spot, The Starving Artist, where I officially started treatment by swallowing 25 pills!
Then it was on to the Princess Margaret Cancer Centre. No traffic. Cheap parking. Only 2 people before me in the Chemo Daycare on the 4th floor. I asked if I could have my favourite nurse, Manny, only to find out that he retired from the hospital in January this year. What an incredible loss! Manny was a beloved nurse who had the ability to seduce my veins to secure an IV in one try. He was funny, irreverent, competent, collaborative and he gave the best hugs! Even people in the chemo ward who have not had the pleasure of working with Manny, know of him. Imagine one person having thes impact he had that is felt so strongly even after he has left. Instead of Manny, I met Stanley. He injected me with velcade, which he inserted sub-cutaneously in my abdomen. He then injected me with Eprex to help stimulate my red blood cells. In less than one hour, we were done!
By this time, the steroid, Dexamethasone, started to kick in and suddenly, I had way too much energy to call it a day. So we collected my mom and sister and took a short hike through Edwards Gardens.
After, I still needed to expend all this excess energy, so Nagib and I went out on a date to one of our favourite Thai restaurants. We came home and I was still feeling energetic, so we watched a documentary called “Wiener”. It’s now 12:22 a.m. and I still can’t sleep so I decided to tackle this blog post.
I am feeling incredibly optimistic as I start yet another journey through cancer. This entails 12 courses of chemotherapy over a 16 week period – every week for three weeks, then one week off, culminating in a stem cell transplant at the end of this year or early 2020. Sometimes I wonder if I am in denial because surely I could not have forgotten the cumulative effects of chemo, the horrible side-effects, how sick I got the last time and the long hospital stays. Perhaps my optimism comes from starting treatment on my own terms when I knew I could not delay it any further. Perhaps its because I had a great month and was able to do fun things that fuelled my energy. Perhaps your prayers and God’s grace are giving me the strength I need to tackle this with peace, without anger or sadness. Perhaps I have just built my reslience muscles because this is not my first rodeo and I have learnt how best to surrender and reduce the wasted time and energy that comes from any setback.
I plan to ride this wave, live life as normally as possible and take care of myself on days when I am not well. My focus is on getting better and hoping for complete recovery by spring 2020. What is a few months of difficulties to get another 3 years of remission that the second stem cell is expected to give me? And Dr. Tiedemann already has another plan to increase my longevity at that time – so I am in great hands.
My reflection for today is about the sanctity of life and knowing that I will do whatever I must to fight to live everyday.
43 responses to “Good to the last drop!”
You will get there my friend. Keep that beautiful smile going and we all are praying for you .in t You are such an inspiration. You have Mowla Bapa with you and he will give you the strength to overcome this. Such beautiful family.
I will be thinking of you as you start your chemo.
We met several years ago as I waited for a bone marrow biopsy and you were waiting to see the same wonderful doctor.
My Myeloma is great but unfortunately I have developed Myelodyisplasticsyndrome. (MDS) . Somewhere along the treatment my stem cells were damaged and now they are producing damaged red blood cells. This has caused fatigue and breathing difficulties. I see another doctor at PMCC for this condition -Dr. Karen Yee. I also see Dr. Tiedeman. I have now had 2 transfusions ( Hb61) . I go for BW every Wed. and if my Hb is below 70, I have a transfusion the next day. I am now transfusion dependant. I am still live alone with help and great friends. I will probably have to go to an assisited living facility within the year.
All the best as you continue your journey.
Mary Coulas, Sault Ste Marie
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Oh Dearest Mary – – How often have I thought of you and have sent green energy your way. I am so beyond sorry to hear about the MDS and the transfusion-depencdence, and yet you maintain such a positive attitude and seem to have accepted with grace what is happening to you. The next time you are at PMH, can I offer to host you at my home? You can reach me at 416-302-9459. Would love to spend time with you and help you through your journey. I am doing really well overall. Had my second chemo and am learning to cope with a new normal. Working hard to ride this wave.
You’ve had quite a journey. I admire your positive energy and resilience, glad you have such a great support system. May God give you strength as you face the 16 week chemo period and the steps there after. Sending you warm hugs all the way from Kisumu, Kenya. I’ll keep you in prayer
Hi Hi Hi Francesca from Kisumu! Amen to your prayers. Today was Day 2 of chemo and it was quite painless. We hosted a barbeque at our home tonight and I am in fine form! Could even consume a whole steak…….Thanks for the warm hugs……
Your positive and beautiful soul is what makes you a survivor!!! Wishing you Many Blessings 🙂
Amen for your blessings…..
With Allah’s grace and his name in every breadth , you will have all the strength
….Allah’s name in every breath.
Mukhianimaa, I look forward to reading your blog posts because I know in them I will find pearls of wisdom from a woman whose faith and love of life will inspire me for my lifetime. Continuing to pray for your excellent health, yours and your family’s strength of faith.
Tears as I read your comments. Thank you for your encouragement.
Cheering you on as your ride this wave and praying for some calm waters ahead.
Thanks Faiza – – i need to visualize calm waters ahead…..
You are an inspiration to so many, much love and prayers, May you always be blessed. Love and best wishes to Nagib and the family
Thanks so much! And amen for your love and prayers!
Dear Munira, May He Who WIlls be ever Graceful to your every moment of equally graceful sharing. As so many have already observed, how you enunciate / express that grace is a blessing to all who partake. So, as ever, may you continue to intuit and inspire, even as you pelt the invasions. 🙂 lol… We’ll smile thru it together; in prayer as well as hope for the very best of outcomes. May all within your inner circle of care and support find much blessing thru it all!
I love your musings and perspectives. I always find kernels of wisdom in what you say. Yes we will smile through this together in prayer and hope!
Our Golden Mkma, beautifully expressed! prayers for strength, good health and a very speedy recovery❤️❤️❤️
Praying for you to have strength and may everyday be a great day.
I love the idea of everyday being a great day!
Sending you lots of love and bigs hugs. You’re in my prayers every day.
Suzanne
Dearest Suzanne – – I feel your big hugs!
Thinking of you and your family travelling down this path together. I was shocked to read – “Although we are grateful for our Canadian health care system, all chemotherapy medicine (except one) is paid for by the patient. In one day, we exceeded the maximum for the year on our group insurance plan.” What happens to those who don’t have insurance? Will pass your blog to a friend and his wife who was just diagnosed with an acute leukaemia. You are truly a role model and inspirational. xx
Our prayers are always with you. You are an angel sent by Almighty. He will look after you.you are a very strong person and a great motivator. Hang in there, you will be ok. Yasmin
Wow – – I am humbled by your message. I do feel His hand on my shoulder!
Mukhiani,
first, i pray that i can get even an ounce of your enthusiasm in life and in the face of “mild difficulties” as you call them.
Second: Mashallah. You are going to tackle this just like everything you do, with a smile and positivity. Our collective prayers are for success in your treatment.
With love zahir
Thanks so much Zahir! It is rather incredible how you will fight for life when it is threatened…..Really appreciate your inspiring message….
I am in awe of your strength and will to fight every possible hurdle there is. All will be well soon.
Thanks Gulshan – hoping to get through this hurdle….
Simply humbled to read your blog..Courage and positivity oozing through the written words. Sending the warmest wishes for your treatment and good health. May your spirits continue to shine.. you are just awesome and amazingly inspirational.
Feeza xx
MukhianiMaa – You are very lucky to have a good family around you, who are all the time with you and your encouragement. Praying for your best treatments
I know. Right? This is something I do not take for granted. My mom is my rock. Nagib is a fabulous caregiver. And Shayne and Sabrina hold me.
What a blessing you’re in a positive mindset. A testament to your inner strength and to all the love, good wishes and prayers flowing your way. No doubt to be had… Wishing you strength. May your caretakers all be divinely guided.
xox
How wonderful to hear from you! Any chance of seeing you in Toronto?
Munira, as always I am so impressed by your sunny outlook. Hoping that the chemo and stem cell transplant will be successful and uneventful and that you will be able to continue enjoying time with your family and your favourite activities for a long time in good health!
Thanks Jennifer! I love your wishes for doing all this in good health. Sometimes we take our health so for granted….
I had a feeling there would be a blog sent out sharing your experience about your first day back on chemo treatment. Munira, once again you inspire and give hope to all of us. Thanks so much for bringing us along on your former and new journey forward.
Thinking of you. I will keep you in my prayers
Good luck with the chemo Munira. Your boundless energy and optimism is a wonder! Keep it up, you have it in you, I just know it!
Thanks hennagirl! Your encouragement brings me joy!
What a strong person you are Munira! Such an inspiration. God Bless You.
Thanks Shamim. NOt feeling so strong today, but working on it…..
Not strong Shamim; just submitting to God’s will and asking for His help……..Thanks for taking the time to write….