Stem Cell Transplants, Moscow, and Borscht…life with Lisa in Russia.

Two Questions

Before I get to the point of todays post, I wanted to fill you in on latest news, and technical bits and pieces…

 

Isolation is in the works! Gowns and masks are being brought into the small ante chamber outside my soon to be locked glass doored bedroom. Sleep was difficult to find, and tossing and turning on the triple neck tubes played a fair game of sting the neck. Weary might be the word of the day. The body finally succumbing to the toxins, and counts dropping appropriately.

 

Great news, however! I had a long visit with Dr. Fedorenko yesterday, almost an hour. Tell me how many physicians you know would sit by a patient’s bed to discuss treatments, studies, research, trials and results? I am a researcher at heart, delving into all things trying to find answers. In Multiple Sclerosis, active lesions will “enhance”, or light up on a standard MRI. These are usually, but not always, good indicators of inflammation and damage taking place in the brain and often spinal cord.

With malignant, or PPMS, the overwhelming majority of patients show lesions, but no enhancement. Particularly in the spinal cord as most present with motor difficulties ad progress rapidly with loss of motor function due to spinal lesions. Why is this the case?

Dr. Fedorenko explained that Tesla-1.5 and Tesla-3 MRI’s are used by most hospitals today. Although powerful, they cannot begin to show the lesion load and activity for progressive patients. Last summer he attended a conference in Vienna on aspects of the use of Tesla 7 MRI’s on PPMS patients. Of twenty five patients whose T-3 MRI showed no enhancement, 100% of those twenty five showed active lesions and enhancement deep within the brain and spinal cord. Malignant MS patients do have damage – watch us cope in the world, it cannot be denied. But visually presenting the damage as “proof” on paper has been difficult. So difficult in fact, that many neurologists deny the diagnosis of MS due to lack of enhancements on an MRI, and wave us off. I call B.S. on that!

 

So where am I leading? As my counts are dropping rapidly, even more so than he predicted, this leads him to the conclusion that I do indeed have many enhanced lesions that are just so deep within the brain matter they cannot be detected as of yet. Diffusion in my spine is quite visible, but he also suspects much enhancement there as well. The growing lesion on the brain stem (not a good place at all) is also effected. This newest lesion explains my shortness of breath as the brainstem controls among other things, breathing and blood pressure – hello!

 

Why good news? Because active lesions respond extremely well to the process of chemotherapy and HSCT! Which means he feels I will do exceedingly well in the transplantation process and recovery afterwards. Does this mean I will be 100% again – no. And I am at peace with that prognosis. Just to be able to wander the beach, walk in open fields of Bluebonnets…dare I go on with dreams?

I guess this post is perhaps a bit too technical, but to all who follow and support me with words, prayers and kindness I wanted you to share in all aspects of the procedure, and perhaps teach you something new medically. Good water cooler talk, you will be lauded for your genius.

 

TWO QUESTIONS I WANT YOU TO ANSWER

The only part that matters is the opening 60 seconds…

 In the 2007 movie, “The Bucket List”, Morgan Freeman and Jack Nicholson play out a poignant scene in Egypt. Listen to the dialog, and answer the questions…

You can stop the video after 60 seconds. The only part that matters is the opening 60 seconds…

Goodnight Moon,

Lisa

 

Joy

…it’s waiting for you.

Advertisements

3 Responses to “Two Questions”

  1. Diana Smith

    Extraordinary information! Help me to understand the effect of the chemo and HCST on the lesions, particularly the one on your spinal chord: Will they be eliminated with this treatment or remain but be nullified or shrink? I certainly understand that a complete restoration to pre-PPMS physical ability is unlikely, but is that because of the damage done by the disease, your age or because the lesions actually remain in place?

    My answers to the questions are (thankfully): Yes and yes. Just not always and sometimes fleetingly.

    XXOO
    Diana

    Reply
  2. Adelaide

    Lisa,
    I LOVE the technical stuff because I am a doctor wannabe! Very interesting and compelling too.
    I am so crazy about your doctor and don’t even know him!
    How are you feeling? I am worried about your nutrition while you are healing. You probably don’t have much appetite, but PLEASE try and get some calories on board! I know the food is dicey, and sounds like that is the only negative about your entire experience, well other than having to do it at all! 😉
    You have entered your new life (!) and epiphanies abound!
    Wish I could send you a PIE from Eat More Pie! One chicken pot pie AND one apple crumb (or whichever is your favorite!)
    Keep a pluggin’ you are an inspiration to us all!
    ❤Adelaide

    Reply
  3. Susie T

    Loved this post-and that the prognosis is sounding even better! I think you would agree with me that grandchildren are an amazing source of joy in our lives. Hope you can hurry home to yours as a new woman.

    Reply

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Basic HTML is allowed. Your email address will not be published.

Subscribe to this comment feed via RSS

%d bloggers like this: