A Setback or a Speedbump?

We had an appointment with Dr. Tiedemann last week and he discussed with us the progress of the treatments so far, and the plan for the future.

STATUS OF CANCER

In spite of two months of chemotherapy, the Multiple Myeloma has not decreased as much as Dr. Tiedemann would have liked.  The doctor is looking for at least a 90% decrease, or even a 100% decrease, before continuing with a stem cell transplant.  He performed another bone marrow aspiration and biopsy to get an accurate reading on the number of myeloma cells in my bone marrow.  Based on the results of the bone marrow biopsy (which hopefully will be available at our next appointment on October 31st), Dr. Tiedemann will likely recommend another two cycles of chemotherapy with Velcade or another drug (Revlimid).  This will likely take all of November and December.

STATUS OF STEM CELL TRANSPLANT

Stem Cell Aspheresis Machine
Plugged into the Stem Cell machine, with Nurse Beryl and Fareen looking on.

We began the stem cell process, starting with a big dose of pre-stem cell chemotherapy (Cyclophosphamide) on October 1st.  I had a Quinton line — tubes implanted in my neck  — to enable the stem cell collection.  The insertion of the line was a small surgery that took about 30 minutes, but the pain and discomfort lasted for days and days.

After a week of trying to mobilize the stem cells (i.e. push them out of the bone marrow into the blood stream), enough stem cells were collected for one transplant, before the stem cell production decreased.  The target was to get enough stem cells for two transplants, so it was quite disappointing that we could not collect the full amount.

Once the cancer is eliminated by 90% or more, I will have to go through the stem cell mobilization and collection process all over again to get additional stem cells for a second transplant, in case one becomes necessary.  If everything goes well, the timing for this will likely be January and February of next year.

As we left the hospital after seeing Dr. Tiedemann, we were quite deflated.  We hadn’t expected this setback – we had expected the Multiple Myeloma to be wiped out after two months of targeted chemotherapy.  And, I was prepared to spend most of December in hospital recovering from a successful stem cell transplant.  I was hoping to close the chapter on cancer by the end of this year.  Now it looks like it will take a little bit longer than we had anticipated.

Our family was impacted with the news in various ways:  Sabrina strongly weighed against accepting an eight-month contract with the Aga Khan Health Service in Dar-es-salaam, Tanzania, which was to have started in January.  (She had already declined another offer to start this past September, to be with me during the stem cell transplant process).  Shayne spent the weekend at home, working remotely, but also tried to stay close to me, to keep my spirits up.

We thought through my situation – inside and out – over the next few days.  We went to Jamatkhana daily and prayed.  And, we received encouraging words and prayers from the leaders of our Jamatkhana.   All of this introspective and discussing our fears out loud caused us to change our paradigm.

First, instead of fretting over having two cancers simultaneously, we thanked God for an unexpected blessing.  The chemotherapy treatments for the Lymphoma (R-CHOP) not only defeated the Lymphoma but also knocked down the Multiple Myeloma by 50%.  (In terms of measurement, the M-Proteins produced by myeloma reduced from 46.3 grams per Litre of blood to 23 g/L.).  Further, the chemotherapy treatments for the Multiple Myeloma (CyBorD) reduced the M-Proteins to 17 g/L.  This is considered, in medical terms, a “Partial Response”, which is better than “Stable Disease” (no change) or “Refractory Disease” (increase in M-Proteins).  Our goal is to get a “Very Good Partial Response” (90% decrease) or a “Complete Response” (100% decrease).

Second, at the 5K Walk after-party, I met a new friend, Roma, who went through a successful stem cell transplant in August this year.  We agreed to meet for coffee or lunch.  Being downcast after the news I had just received, I wrote to Roma and cancelled our meeting.  Her response?  She gave me some tough love and said that two additional months of treatment was a small price to pay in the scheme of things.  She reminded me to focus on all the things that were great in my life, starting with a supportive family and wonderful friends.  She asked me to think of people who were worse off than me, and to count my blessings.  And there are a lot of blessings to count:  the independence to drive to hospital appointments, friends to have lunches with, raising critical funds for Multiple Myleoma, going to Jamatkhana several times a week, top-notch care from a dedicated team of professionals at The Princess Margaret.  Most of all, I have strong hope for a happy and fulfilling future in which I can contribute meaningfully to the world.

In the end, we have strengthened our resolve to beat this cancer, and not let it hamper our future plans (Sabrina is going to Dar in January!) and we have decided to stop calling this a “Setback” – just a Speedbump (Speed Hump?) on this journey through cancer.

28 Comments

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  • Roma , November 8, 2012

    HI Munira….I am so sorry, haven’t had a chance to read your blog as work took over everything else. I am so happy to see all is WELL!!!! Remember you are brave!! Courage does not always roar, Sometimes, courage is the quiet voice at the end of the day saying, “I will try again tomorrow”. Sending you lots of positive thoughts and big hugs…Roma

    • Premji Family , November 11, 2012

      Hi Roma. You are a wise woman! Thank you for helping to put things in perspective. Much love, Munira

  • Anonymous , November 3, 2012

    Munira, you are always in my thoughts and prayers. I’m glad you and your family are not letting the cancer hamper your futures. All my love, Patti.

    • Premji Family , November 11, 2012

      Can’t let the cancer hamper us Patti. We’ve got to beat it! Munira

  • Anonymous , November 1, 2012

    It’s just a speed bump to jolt you around a bit Munira. You are a believer and even the toughest of road conditions will not stop your journey. Only good things are on your way. This will no longer be a difficult ride once you will it to go away. Your beliefs and trust can bring about miracles. I believe in your strength to defeat this little hump!
    Love, Deva

    • Premji Family , November 3, 2012

      Thanks for believing in me Deva! More and more, I am doing what I can and trusting in God to do the rest. Love, Munira

  • Anonymous , November 1, 2012

    Hi Munira, Thinking of you and praying with you. Thought I would drop you a line to let you know you are thought of ofen. Still in LA and see Nargis Alibhai often and talk about all of you.
    Warmest to Mukhisaheb.
    Love and prayers,
    Naseem Glaubitz

    • Premji Family , November 3, 2012

      How are things going with you Naseem? I miss you. I just heard from Yasmin Alibhai – she is part of a novel campaign to raise awareness and funds for cancer. When do you anticipate being back in Toronto? Thinking of you and wishing you lots of success with your project in LA. Hugs, Munira

  • Anonymous , October 30, 2012

    Munira, you inspire me over and over! May Mowla always shower his choicest Blessings on you!My prayers are with your family.

    Saira Nasirdin!

    • Premji Family , November 3, 2012

      Ya Ali Saira! How have you been? Your prayers and support mean the world to me! Munira

      • Anonymous , November 6, 2012

        I have been good Munira planning a trip to Nairobi in December, haven’t seen my mum in 7 years, she is not keeping too well and we are not getting any younger. Really looking forward to seeing her, would you like me to bring you something from Nairobi? please dont hesitate! take care dearest!

  • Anonymous , October 29, 2012

    Munira – your positive attitude in life is attracting like minded people like Roma. Everyone is allowed a little bit of wallowing. However you have found the strength, courage and friendship that helps you put things in perspective and fight back. This is a great blessing. Our prayers are always with you. May you continue to be inspired and have the strength to overcome any speed bumps or humps. Lots of love and prayers. Mahbanu and Yasmin.

    • Premji Family , November 3, 2012

      Mahbanu and Yasmin. I look up to you for your wisdom, your kind words, your perspective and your friendship! Love, Munira

  • Lucy , October 29, 2012

    Success with the cancer will be yours and family Munira. Do not wither God is with you. You will definitely becomes a blessing to many with the testimony of conquering and all the knowledge and experience you are passing through will help others even more. There is a song which says……………’count your blessing name them one by one, count your blessings see what Lord has done, count your blessings name them one by one, and you will be surprised to see what Lord has done.” Hope and victory will be yours

    • Premji Family , November 3, 2012

      I love hearing from you Lucy! I really see the value of counting blessings one by one. It makes me realize how many blessings God bestows upon us every moment of every day. Great reminder! Munira

  • Anonymous , October 28, 2012

    I was watching tv and there was a program that mentioned “dont just sit there and nurse your wounds,but if you are still in the game with all the pain, all your scars will turn into stars” since God is listening to you and appreciates your fight and .instead of saying”I give up” he mentioned ” stay in the game and continue to do what you would normally do.”…(something like that.. and went on to gave do many examples

    It was on Sunday program channel 10

    Salome:))))..

    • Premji Family , November 3, 2012

      I am so staying in the game Salome. Givingup is not an option. It’s always great to see you in Khane! Munira

  • […] via A Setback or a Speedbump? « I WILL SURVIVE. […]

    • Isabelle , October 29, 2012

      coucou munira…. I am following jour journey on this Blog. I think of you often and most important, you always teach me something…. I hope this day will be a good day for you.
      isa xx

      • Premji Family , November 3, 2012

        Hi Isa. How are you mon ami? Can we talk on the phone? I miss your sense of humour and want to hear about everything g that is going on in your life! Did you come to Niagara Falls in the summer? Love, Munira

  • Julie Nunes , October 27, 2012

    I like Roma. Thinking of you as you gracefully leap over the speed hump. Let me know when you are up for a lunch. Miss you and love you lots.

    • Premji Family , November 3, 2012

      Hi Julie. The thought of having lunch with you is tantalizing! I miss you too and look forward to seeing you soon! Munira

  • Begum Janmohamed , October 27, 2012

    Mukhiani Maa, We pray for the success to resolve this cancer and fulfill your wishes. And pray for Sabrina’s success in her plans going to Dar. Mowla give you and your family more courage .

    Begum

    • Premji Family , November 3, 2012

      Thank you so much for your prayers and your wishes for courage Begum. Also appreciate your thoughts for Sabrina! Munira

  • Azmina , October 27, 2012

    YES! Munira Mukhiani. Way to go. You are a very strong lady, my prayers are there for you.

    • Premji Family , November 3, 2012

      I am actually not very strong; just doing the best under the circumstances. Thank you so much for your prayers. Munira

      • Heather , November 9, 2012

        Hi Munira,

        I was reading your blog this morning for the first time and it’s incredible. It must be so cathartic for you sharing what you’re going through by writing this wonderful missive. You’re an inspiration to us all!!

        I’ve got to that stage in my life when I worry a great deal about getting ill – almost to the point if paranoia. I’m SO unbelievably sorry to hear that this is happening to you. You’re absolutely spot on when you say that right now, it’s a speed-bump and not a setback. I, for one, have always found speed-bumps to be over-rated as a method of slowing us down. I generally grit my teeth and accelerate over them. They’re annoying pseudo obstacles installed in an attempt to check our intended course and, to my mind, they are best disregarded as such. It can be rather painful speeding over them, but if we bite that bullet, it means they’re behind us a little sooner than if we came to virtual stop to negotiate them, leaving the road ahead as smooth as it was before some b—-r decided to stick them there!

        In no way do I wish to trivialize the horror of what you’re going through, Munira and I only use this description because I know that you know me well enough to know that. Right now, you’re my heroine! You are absolutely positive attitude personified.

        I’m not a religious person, so it seems a little disingenuous for me to ask God to bless you. Instead, I shall tell you that you are one of the most beautiful people I have ever had the privilege of knowing and I look forward to being your friend for many, many years to come.

        I shall continue to follow your slalom through the various pieces of traffic furniture life is throwing at you right now and will feel close to you through your wonderful talent for writing.

        All my love,
        Heather xx

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