Ending Before You Begin

I am a huge believer in the philosophy that you must end before you begin and our vacation to Florida gave us just the opportunity to do this. It was the midpoint of our family’s journey with cancer.  The  lymphoma was in remission and I would be starting treatment for the multiple myeloma in two weeks.

So Florida gave us the occasion to celebrate, to reflect and to recharge our batteries.  We stayed at a hotel in St Pete’s over looking the beach.  We woke up with the sun instead of the alarm clock.  We swam, we walked, we talked, we watched beautiful sunsets.

And we ate.

 

 

After months of not being able to enjoy or taste most food, my appetite came back with a vengeance.  I enjoyed crabs and blackened fish at Crabby Bills, consumed huge portions of pasta and salad, experimented with Thai and Cuban food and wolfed down waffles with various toppings from the Waffle House.  I will never take food for granted again!  I put on some much needed weight and my stomach was happy with me.

 

We landed in Toronto on August 1st and my chemo treatment began the next day.  The chemo for multiple  myeloma is significantly different from what I experienced with lymphoma.  The lymphoma chemo was R-Chop, an invasive chemo that took place every 3 weeks for a full day.  Most of the chemo was administered through IV.

 

The myeloma treatment has a fancy name: CyBorD, which is a combination of oral and intravenous chemotherapy and steroids.  CyBorD stands for Cycloposphamide, Bortezomib and dexamethasone.  Every Thursday, for the next 16 weeks, I have to take 22 pills on the day of the chemo, go to the hospital to have bloodwork done and then check in to Chemo Daycare for the IV portion of the chemo.  The IV portion is Bortezomib, a drug known more commonly as Velcade, which takes about 10 seconds to administer by IV.   That’s it!  It is a new and highly effective drug in treating myeloma. The drug is not currently covered by the provincial government for all cases.  The cost of each Velcade dose is approximately $3,000!  I am expected to go through 16 chemo treatments which will cost approximately $48,000 over four months.  Dr. Tiedemann submitted a request to the distributor of the drug in Canada, Jannsen Inc., to approve this drug for me on compassionate grounds.  On our last day in Florida, we got a call that I was approved for the drug.  Our gratitude knows no bounds as we would have been out of pocket for this cost.

Myeloma is a disease of the blood and approximately 6,,000 Canadians are currently living with it.  It is a disease that affects older people. The unique characteristics of this cancer are bone pain and damage, recurrent infections, anemia, problems with bruising and bleeding, and damage to some body organs (particularly the kidneys).  While I have myeloma, I am not experiencing any of the symptoms, except for the anemia.  My bones and kidneys are fine.  Another miracle! For more information about myeloma, stay tuned for our Myeloma 101 blog.

We are now settled into the second phase of our journey and are feeling good.  Florida was the perfect place to close part 1 of this journey and we welcome part 2  with optimism and a sense of moving forward.

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26 thoughts on “Ending Before You Begin”

  1. Munira, I’m glad part 2 of your journey is well begun! You are so inspiring. I would love to see you when you feel up to it! Love, Patti.

  2. Hey Munira Mukhiani
    Just got back from NEW YORK!!! I always love seeing the pictures in your blog. You all look absolutely beautiful!! It really warms my heart every time I read your blogs and continue hearing the positive news. It gives me a renewed sense of appreciation about life that miracles still exist and you are living proof of that – from your personality, your attitude your strength, your courage, your life lessons and just being YOU!!! I’m glad you have recharged your batteries and are tackling the next course head on! Our family’s prayers continue to be present and are intensifying as you complete this 2nd part of your treatment. Love you all and I really miss seeing you and your beautiful smile.

    Dilshad

    1. Sounds like you had a fabulous time in New York. We are convincing the kids to go to columbia for their masters to give us a chance to visit the city more often! Thanks so much for your kind words Dilshad. Florida was the perfect place for us to charge our batteries. Denny’s serves a mango smoothie that tastes totally like your mango delite. So we remembered and toasted you every time we had the smoothie! Love Munira

  3. Munira and Premji family always in my thoughts and in my prayers. I read all posts and get a smile for you that you are encouraged. GOD is watching over you. You are a blessing to many and He is happy and blessing you.

  4. Munira Mukhianima, You are always in our thoughts and prayers. May Mowla bless you with strength and courage to fight this. We love you and pray for your speedy recovery.

    Rashida & Madat Somani

  5. eid mubarak and wishes for peace and speedy recovery , shukar for being able to go so far,tommorrow will be totally different and soon it will be history

  6. Way to go Mukhianima! Beautiful pictures! Sending you love & prayers for full recovery!

    Eid Mubarak to you & your Family!
    Hugs,

    Rashida ,Salim & Family

  7. Apart from sharing your sickness and informing us about various treatments, you sure inspire about relationship building, and enrichment as well LOL, JUST KIDDING

  8. YAM Mukhiani Ma,
    First of all Im extremely happy for you and all the positive things in your life, your much deserved vacation and more. As always, the information you provide in such detail is also good to know. All the very best, always,

  9. Beautiful pictures, beautiful family, look out Myeloma, here comes Munira….it doesn’t stand a chance! Peace & love xo

  10. Good to read about the improvements.
    May you have full recovery, and never have to look back again.
    Our prayers are with you.

  11. Ahhh one of my favorite place–St. Pete. I loved seeing your pictures and will be sending love and energy for this next step in your journey, Munira and family. BJ

  12. Mukhiani Maa,

    With all the good work and wishes you have done for Jamat and other people, surely God is watching you too. Again you have been so nice to let us know how different kinds of cancers and treatments are available. I look forward to read your blogs. Keep up the smiling face.

    Begum

  13. Thank you for sharing. I learn a lot at all different levels. As a nurse people expect one to know everything about disease processes, but as a cardiac nurse my knowledge about cancer is very limited, especially since there’s so much change in treatment now.

    Wish you all the best from the bottom of my heart. It’s incredible to be part of your journey and to hear all the positive news.

    Love and hugs,

    Shehnaaz Dhanani

    1. I really appreciate your comments because sometimes I am not sure how much technical info to put in the blogs on the different kinds of cancer. Your feedback tells us that we are on the right track. Thanks! Munira

  14. Saira Nasirdin,

    Great News!!
    Munira, i am so glad that you had a good time on your vacation and ate to your heart’s content! it is so true we are always watching what we eat!!!!!!!, but i am glad you are fine. Look at the miracles in your life amazing!!! first you dont have to pay the 48,000 thousand dollars and secondly your organs are perfectly okay!! Munira mark my words at the end of all these treatments you will be completly cured!! i will be watching this blog for the great news! Someone has his hand on your shoulders! and is walking the walk with you. May you always be showered with the best blessings! i am extremely happy for you!!!

    1. Thanks Saira. I am feeling very blessed and I do feel Gods hand on my shoulder. Amen to your prayers and your wishes. I am currently at the hospital waiting patiently for chemo #3! Love, Munira

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