The Sweet Spot

May 24, 2019

How do you decide when to start treatment?

Do you wait until you experience symptoms from the cancer?  For multiple myeloma, these could potentially include renal failure, bone lesions or anemia (including hyper hemolytic anemia — which nearly killed me in March 2012).

Or, do you start treatment before the symptoms manifest, when your body is healthy to go through chemotherapy?

That’s the position we find ourselves in.  I asked Dr. Tiedemann point-blank what he would do if he were in my position.  His response, “I really can’t say definitively.  I can make a case either way.”  My myeloma has a personality and a mind of its own.  After it declared itself and made its grand comeback, it has started to behave and the numbers have remained steady over the past six weeks.  Treatment or no treatment?  Some markers lean toward starting treatment immediately; other markers suggest a “watch and wait” approach.  We talked through the options with Dr. Tiedemann until we came to an agreement that we were all comfortable with.

The plan is for me to get a skeletal x-ray immediately to rule out any bone lesions, get bloodwork every two weeks to monitor any significant drop in hemoglobin and pay attention to the M-protein numbers.  And we have a scheduled appointment with the doctor in 4 weeks to revisit the question of treatment date, the sweet spot that is neither too early nor too late.

I am happy with this development.  Starting treatment for myeloma now could impact the regimen that I am currently on for breast cancer as my body would be immuno-compromised.  I also see this as an unexpected blessing of time.  I had fully expected when I went for my appointment today that Dr. Tiedemann would want me to start treatment immediately.  Now I have bought myself potentially another 4 weeks (maybe longer) depending on how my impish, unpredicatable and mercurial myeloma behaves.  4 weeks of time where I had freed myself of all obligations. 4 weeks of no commitments. 4 weeks of bonus time. I am beside myself as I think of all the things I can do during this time.

Perhaps I can use this time for delicious coffee dates with friends. Perhaps I can learn a fun new skill like salsa dancing.  Maybe a trip to Edmonton and Calgary to meet favourite cousins is in the offing. I am excited about a project of decluttering our home from top to bottom.  Or getting a personal trainer for the first time in my life.  Or working on another collaborative recording of devotional music.  I am thinking about a day of working in the garden, planting and pruning,  Or I could binge-watch Game of Thrones, as I seem to be the only one in the universe who hasn’t watched this show.  I plan to read a lot, go to baseball games with Nagib and try new Instant Pot recipes.  The possibilities are endless and entirely exhilarating!

Out of curiosity, what would you do if you had a full month at your disposal?  How would you spend your time and energy?

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19 thoughts on “The Sweet Spot”

  1. Dear Munira,

    Sorry to hear about the recent turn of events. I am forever amazed at your strength and positivity! Go Munira! You are in my prayers and sending you more positive vibes!

    Yes to BONUS time!!! I hope you go eat everything you desire, because that is exactly what I will do😋.

    Take care!

  2. Munira, you are a woman of courage, humour, beauty, and grace. I too have not watched Game of Thrones – although from what I’ve heard, I’m not sure I’m up for it! The gift of a month … magical. I would take gentle hikes in forests, play with the dogs, spend time with my husband, my children, and my dearest friends. I would laugh as much as I could, as often as I could. I would turn my face to the sun at every opportunity and spend time near water, listening to the surf and walking on the beach, soaking up every precious moment. Maybe I need to do more of these things more often right now, not waiting for the precious gift of a month … thank you for the reminder! Sending you a big hug!

  3. Love your excitement – if your month of “no commitments” does indeed involve a binge watch of Games of Thrones- call me! You are not the only one!!
    Jo
    😘 xoxo 😘

  4. During this month, on this special day
    Especially I pray for Strength and Mushkil Asaan
    Jointly, our prayers will be answered Insha’Allah

  5. Hello Munira, All the things you want to do in the coming weeks would be good and I would travel if it doesn t tired you too much. Go out have a coffee. I am in Toronto for the moment to see my queen mum and all my sisters also. So we can meet for a coffee in case karibu! Lots of love and hugs. Lailtul kadr tonight maybe will see u in khane inschallah. May you be blessed with your family always on this auspicious night. Love you. Nazline ne from Switzerland

  6. Munira I would forgo the idea of doing and focus on the moments, what if someone was to read this list on 5/27/2020 what would resonate and what would be the message and hope? would there be an “aaha” moment when they look back at your list.

  7. What a great question! I would want to accomplish a few things: make some great memories with family and strengthen my body (exercise and healthy food), mind (read, attend interesting lectures) and soul (help others). Decluttering is always satisfying too! 😀

  8. Here’s to BONUS TIME !
    Just wanted to let you know that I, too, have not watched Games of Thrones. There are more of us than not 🙂
    In getting back to practicing gratitude this year, I have realized that collecting memories and not things seems to be the most nurturing thing for my heart.

    From my heart to yours, I wish you an amazing four weeks of bonus time! GO Raptors Go! Go Jays Go! and GO MUNIRA GO! Cheering you on!

  9. Dearest Munira, Perhaps, we can make time to meet again?
    Coffee dates with friends—Love coffee and I am a friend and a fan!
    Salsa dancing—I can teach you my version of it.
    De-cluttering—I am so doing it this summer so let’s make a calendar, a to-do-list, and check each other’s progress.
    Personal trainer—Did I tell you that my very first and much-loved job was an “Aerobics Instructor”?
    Gardening—You know I’m your person.
    Game of Thrones—No, you are not the only one in the universe for I haven’t watched a single episode either. Maybe we can start together?
    Reading—Let’s come up with a book list!
    Instant Pot recipes—I do have a few, I’d love to share.
    To answer your question, I devote my whole summer for gardening– everything else I do depends on whether my garden needs me there or not. That’s where I get my peaceful oblivion, happiness, and inspiration.
    I hope you find you ideal sweet spot and do it all over again and come out a winner as you always do.
    Love you loads,
    Deva

    1. I so loved waking up to your note Deva! With you , I visualize wild karaoke parties – remember the one at your place? And poetry; lots of it. Let me know when you are available so we can get together. I miss you lots!

  10. I am sorry to hear your numbers are increasing; but knowing you, you will combat these numbers and bury them in no time. In the meantime, my intense prayers for you (as always). If I had 1 month of free time….hmmm…let me see – hands down if I was in your position and I was allowed by my doctors to travel, that is what I would do. Somewhere warm, sunny; the Mediterranean soft breeze cascading and healing my physical, mental and spiritual being, looking out at the miraculous blue/green ocean with the multitude of sea life I can explore, hiking and exploring the island, taking in its people and culture and just basking in the peace and tranquility life has to offer. Oops just lost myself and my thoughts – I better get back to work – LOL!!!!!
    Love you Munira and sending you positive thoughts, energy and prayers virtually.
    Dilshad

    1. Today my prayer for you is that you go to the Mediterranean, feel the soft breeze and be spiritually, physically, mentally and emotionally connected. I see you there!

  11. Good decision Muni. By the way, count me as another person on the planet, who has not seen “Game of Thrones”. Your question is to what I will do if I had 4 weeks of “doing nothing time”? For that I have to think it over and let you know in couple of day.

    With my immense love, and sincere prayers for your successful on going would be treatment, and Ya Ali Madad. Dearly yours, Daddy.

  12. Good morning dear Munira – we love your plan, and celebrate with you in having an extra month to do what brings you joy! Warmest wishes, Dave and Erika

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