Life after the stem cell transplant

Toronto – March 17, 2013:

Friday marked one month since I had my stem cell transplant and it is not what I had expected.   I figured that once I came home, I would be able to reclaim my life with vigour and energy. Instead, I take two long naps a day and then look forward to sleeping again at night. Getting a glass of water makes me tired. Taking a walk around the block guarantees that I will need to sleep for two hours. Eating is exhausting so I eat in small portions.

On the plus side, my oncologist, Dr. Tiedemann, is happy with my progress. His orders are for me to rest and let my body — and bone marrow — heal for two months.   He will conduct tests in May to determine the success of the transplant. Since there is no cure currently for Multiple Myeloma, the stem cell transplant, if successful, will keep the cancer at bay for an average of 2.5 years.  It is expected that the cancer will come back at some point and I will require a second transplant.  In spite of these numbers, I am pretty optimistic. I plan to defy the odds! At the hospital, I met people in the ward who did not require a second transplant for 5 years and longer, so I know it is possible. I also know that God is the ultimate healer and is in charge so I leave my worries to Him. Sometimes I tell Him that I would really like a cure for Myeloma during my lifetime. I visualize him smiling as I put my request somewhat repeatedly to him!

The biggest challenge for me right now is learning to be patient while the recovery is much slower than I would choose, and finding the opportunity in that space between where I am now and where I expect to be. I have found this difficult. My emotions have been all over the place and I have been teary-eyed and sad as I deal with this “new normal”.  Part of this is that I am still feeling the effects of the intense chemo that was given to me as part of the transplant.  Slowly, things are improving and everyday I am a little bit stronger.  I am re-learning that it is okay not to accomplish projects and do something I consider of value every day (I am such a high achiever!).  I am learning that napping and sleeping is okay and the best thing for me right now.  I am also finding it helpful to connect with individuals who’ve been through the transplant process and to talk about shared experiences, concerns and fears; and to learn from each other.

In the meantime, life goes on. Nagib and I are planning to go to New York in six weeks to celebrate our 31st wedding anniversary and watch the Blue Jays at the new Yankee Stadium! (Remember the bucket list?). I am delivering a workshop on teamwork in April. I hope to start working out once my Hickman Line is removed on March 27th.   And, I’m emceeing a wedding in May!  These are all baby steps on the road to recovery.

Today, I went to Shoppers Drug Mart and bought a gorgeous purple eyeshadow and beautiful lipsticks to herald the beginning of spring next week.   I declare that life is to be lived – no matter what the circumstances!

– Munira.

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36 thoughts on “Life after the stem cell transplant”

  1. God bless you, Muni Bai!,
    Thank you so much for these words, “I declare that life is to be lived – no matter what the circumstances!”

    1. Hi Ashif bha! I love when you respond to the post, as it is a way for us to keep connected.
      How are you doing? Yes, I am totally living life to the fullest (when I am not sleeping!).
      Love, Muni bai version 2!

  2. And do not forget,Life is to be CELEBRATED as well!!!
    God Bless you & your family with Love,Happiness & Good Health…..Amen

  3. Munira,

    I am so sorry to hear that your emotions are all over the place. It takes 3-6 months to go back to your normal lifestyle. Hang in there and you are improving everyday! Just think about everything you have been through, you will get your energy back and you can do everything that you planned to go! Keep smiling and focus on the positives. Other than the fatigue, it’s good to hear that you are doing okay. Hope you didn’t do too much damage on shopping. =) Sending you lots of hugs.

    p.s Poppy red is the new spring colour. A great lipstick colour or hair highlights…

    Joanne C

    1. I am so inspired by your comment. I will check out poppy red and plan to go shopping soon! Right now it’s tough because I need so much sleep. Getting better slowly – – fatique is turning into tiredness….. Lots of hugs back Joanne, Munira

  4. Hi Munira,
    I had to smile when I read the list of things you are doing along with the words ‘these are all small things’. Here is what I hope – apart from a deep wish that myeloma and other forms of cancer are cured in our lifetime and you recover fully, quickly. I hope that you gain the perspective to see that what you are doing right now – purple eyeshadow, living life fully regardless of the circumstances, allowing your body to do what it needs, is doing something BIG. Your writing is big, who you are is big and the impact of reading what you are living and the gift and inspiration that offers – including the hardships, the frustrations, tears, fears, joys and fully human experience – is absolutely enormous. I treasure your blog, and, regardless of distance in time and space of interactions with you, treasure who you are and how you live life.
    I’m not saying any of this to make you feel better, though I’d love you to feel better, I’m saying this so you can have that other, larger perspective included as you reflect on your life at the moment.
    With love,
    Elizabeth

    1. Wow Elizabeth. Thanks for sharing your perspective. It’s funny how when you are in the throes of a situation you sometimes lose sight of what is happening in the present. I felt really encouraged and good after reading your comment. I am doing some really cool stuff – – thanks for allowing me to see it. My focus was on all the things I was not doing because I was sleeping so much. You are a great coach! Munira

  5. I agree completely with what Elizabeth has just written above. She must have just posted this as two minutes ago, when I checked, this comment was not there. So I can see that becoming a better swimmer is still on your bucket list but not until you have the strength to spend some time in the pool, and I look forward to that moment when I can say “OK Muni, jump into the shallow end”. As Elizabeth said, you are doing BIG things, so keep at it. Warm Regards. Naz

    1. Hi Naz! I will be calling you in April and jump in the shallow end with your support! My hickman line is scheduled to be out on March 27 – – I hear that the site will be quite sore for a few days after. Then, not only will I be able to swim, I will also be able to shower normally, and work out! Can’t wait to call you and get to know you well……! Munira

  6. YAM Mukhianima, Navroz Mubarak and may you be blessed with speedy recovery, good health, immense happiness, barakat and spiritual strength.

    Regards, Nazir

    1. Ya Ali Nazir Nensi! When are you coming to visit me again?! I know your prayers come from the heart. And on the occasion of Navroz, we also pray for you and your family for wonderful opportunities to serve and for material and spiritual well-being! Nagib and Munira

  7. Hello Munira Mukhianima, You are truely an inspiration to us all – your baby steps are giant steps for most – Navroz Mubarak to you and family. I hope you are able to complete all your bucket list and also that there is a cure for Multiple Myeloma in our life time! Take care and go girl with a Canadian flag to the Yankee Stadium!

    1. Hello Anonymous! I am not taking a Canadian flag to Yankee Stadium – – I may not come out alive! Nagib and I went to the old Yankee Stadium many years ago on a tour and anyone with Blue Jays memorabilia was drenched with beer, spat at, etc. We learnt our lesson! I love your wishes and wish you a spectacular Navroz Mubarak! Munira

  8. Dearest Munira,

    I am 100% sure that there will be a cure for Myeloma in your lifetime because you are going to be here for a long time dear!!! 🙂 and I am sure that Mowla is smiling down at you right now. Munira best wishes for your 31st Anniversary! I wish you many more years,may Mowla always bless you with health, wealth and happyness!! Ameen!!Munira do you skype? would love to skype with you. I am sure you will look amazing in that purple eyeshadow! Take care!

    Saira Nasirdin.

    1. Hi Saira! i do have so much to live for and really hope for a cure in the next few years. What a great idea to skype. Let me get some energy back and then we can have a skype date! Munira version 2

      1. Looking forward to skyping with you dearest Munira version 2 lol!!

        you are so full of life and optimistic, I love that about you. take care dearest friend.
        Saira Nasirdin.

  9. Mukhiani maa
    Navroz mubarak

    I hear you ,prayers for your success ,hang in and go with the flow and listen to yur body ,
    dont feel bad about yourself,
    if yu cant lift yur spirit, no one else can,
    so what?????

    hope yu enjoy this

    Enjoy it !

    salome

    1. I love the attachment Salome! I used to watch this program religiously every Friday night and it brought back so many wonderful memories. Thank you! You will be proud to know that I am totally listening to my body. Munira

  10. Many thanks for the inspirational blog. Navroz Mubarak to you and your family. May the new year be a year of peace and joy and may mowla fulfill all your good wishes. Enjoy the game and your purple eyeshadow ;-)).
    Yasmin

    1. Yasmin – – I am loving my purple eyeshadow! Amen to all your prayers. And I pray also for you and your family for an abundance of joy and love in your lives. Love, Munira v2

  11. Dear Munira,
    I love that you are sharing this experience. You are an inspiration to us all.
    The fatigue goes away, bit by bit. Your body has just undergone a huge process, and you can rebuild your strength but listen to your body and rest often.
    You go girl!
    Lorraine McCallum

    1. Hi Lorraine – – I am hoping that the fatigue goes away at some point. This is what I am finding most difficult at the moment – no energy. I will take your advice of resting and rebuilding my strength. I thank you so much for your encouragement. Hugs, Munira

  12. Amen to life has to be lived. A precious gift which God gave us and you have taught us through this blog that we need to appreciate it everyday. With God is hope, Love, Faith, ‘To get where God wants us to be, We need to choose to stay where He wants us to be, instead of quitting’. And this is the courage, the attitude God has given us and you Munira is really living it as difficult as it can be God is watching and walking with you. God bless!

    1. Hi Lucy! Habari gani? I really feel God’s love and presence in my life. Faith is a really important part of my healing, and you remind me of this everytime you write. Asante sana! Munira

  13. Dear Munira (Mukhiani Maa),
    Berzoor and I are truly blessed to have known you in our lifetime. You have brought so much hope, inspiration and love to the world. Navroz Mumbarak to you and Nagib and the kids. We pray that Mowla is by your side at all times. Mowla gives you the inspiration to help all of us through your recovery process. I can’t believe that after going through so much, I can still see your smile through your words. We feel your passion for life and Mowla feels it too. I pray for lots of joy, happiness and excitement for you in the new year.

    Shahirose and Berzoor

    1. Hi Shahirose and Berzoor! Navroz Mubarak to you. I had a pretty incredible day today and am just writing a post about it! Thank you for your prayers. I know that these prayers are keeping me energized and positive. Did you get a chance to listen to the cd’s? Much love Munira version 2!

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