Everyone is waiting

I know I promised answers from the doctor on Thursday but I’m afraid we left with more questions again. Dr. Vasu is brilliant and conservative and patiently explains everything to us. She also tends to focus on the negatives when talking to us. She is not the type to pat your head and tell you everything will be okay. She tells us that we are smart people and she knows we can handle it so that’s why she shares so much. Her words bring reality and it is scary. I need to hear the truth but I also need to hear something positive from her. Like I might have a chance of long-term survival with minimal complications. I know it’s a slim chance for me to finish this and live a normal, healthy life but if there is a chance I need to hear it. It’s what keeps me going.

On Thursday we did receive some good news but it is unclear how we will proceed. The anonymous bone marrow donor who was tested for me is a 100% match. He meets 12 out of 12 criteria. An allogeneic stem cell transplant using cells from this matched donor is an option for my treatment. This is a risky procedure with scary side effects and possible long-term damage to my body. It would require a 6 week hospital stay and a year for recovery.

The other option right now is continuing with chemo. However, phase 3 of chemo relies heavily on on the drug Vincristine. This is the drug that possibly caused my dysphonia, dysphagia and autonomic neuropathy that I am still dealing with. After consulting with top doctors it was decided to challenge the earlier problems with chemo and try a 50% dose of Vincristine and monitor closely for side effects. A decision on the transplant will occur only after observing how I tolerate the Vincristine. Phase 3 of chemo starts Tuesday

Posted on September 9, 2012, in Uncategorized. Bookmark the permalink. 4 Comments.

  1. You haven’t shared and I haven’t looked up what the statistics say about your long-term prognosis. However, I think regardless of those numbers, you have to have hope. Why should YOU not be one of the 5, 10, 40, 80% (whatever the number is) that survive or don’t have lasting neuropathy or whatever the statistic may reflect. I think being a realist is good many times and in many situations. But, survival is about adaptability and sometimes that means changing your outlook to be an optimist. If some people survive your Dx and treatment, then why should YOU not be in that group, no matter how small it is. I think you can tell your Dr. that you need the facts and reality, but it would also be nice to have the unicorns and rainbows outcomes thrown in there for balance because they do exist. I’m glad they found you a perfect match, it is nice to have that option, should you need/want to go that route. Lots of hugs, Jen

  2. Well those are tough options all around Lauren, and I won’t pretend I have a clue how I’d respond in the same situation. What I do know is that your attitude and fighting spirit are AWESOME. ANd even with that, you’re more than entitled to a sucky day where you wish the answers were more clear or more positive. Thinking of you! Jeannie

  3. Love that video and song Lauren – it was as if it was written and sung for you! Waiting is the worst… it doesn’t matter if we are waiting for news like this, or waiting for a baby to be born, waiting for traffic to dissipate, waiting for the call about the new job or waiting for Santa Clause as a child. We are conditioned early in life to not enjoy waiting. When I am really frustrated while waiting – I try to stop and focus on the present moment. I work to focus on things like the wind blowing, one of the girls laughing, a bird flying by… I try to recognize how fleeting every moment is, and stop trying to rush whatever it is I wish would happen already. I eventually can usually find peace in knowing it is all going to happen exactly when and how it is suppose to happen….which is not necessarily when I want it to happen. My 2 cents… take it for what its worth 🙂 Curious where this all came from? Read some THICH NHAT HANH… he is my present moment guru 🙂

  4. I really like what Jen Weeks said!

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