So the last post was "Clear as Bell", but we were still waiting on the brain. Dr. Naryana cancelled my brain MRI for this past Monday because I also had an experimental PET MRI the day of the PET scan. It actually takes images of the brain as well. The images clear enough to make a general assessment of the brain.
On Tuesday Dr. Volm told me that he had spoken with Dr. Narayna and everything looked stable. What did that mean? Stable? Volm said I should wait to speak with Narayana directly for a better explanation. Hmm...I was a bit apprehensive about the word "stable." I was hoping for something along the lines of vaporized, decimated, no sign of, no evidence of, no nothing. However, the news is still really good as far as a brain doctor is concerned. There are no new lesions and the ones that are there are very small, not growing and showing no activity. Essentially, they are just hanging out now. C'mon guys, I know a great little spot in East Village where nobody would bother you. Oh, well. The lesions may never disappear but as long as I have no symptoms and there aren't any negative changes with the MRIs, than there is no reason to be worried. Ok, here is where I release control. Deep breaths.
As I said earlier, I was nervous before I spoke face to face with Dr. Narayana. Nathan reminded me that this is our life now. We are way ahead of the curve. Very few patients with my diagnosis has progressed so far so quickly. It is extremely likely I will live a very long life with continued observation and treatment. I just have to manage my expectations. He said to have faith that the news IS really, really good. So, I'm going to break open the champagne on New Year's Eve and have a sip from someone else's flute. It's going to be a great 2013!
Whatever you celebrate this holiday season, may you be filled with joy, health, hope and prosperity!
"...And to all a good night."
Clement Clarke Moore
Wednesday, December 19, 2012
Wednesday, December 5, 2012
Clear As A Bell
Okay - so there is so much information to share I'm going for bullet points and not necessarily in chronological order.
1) My PET scans came back clear as a bell yesterday! As my friend Laura would say, "Whomp, whomp!" I do have my Brain MRI coming up on the 17th but you all have my back so I'm not worried.
2) Dr. Volm is so pleased with another clear scan that he is giving me off from my January chemo cycle so I have a chance to enjoy a long vacation. Luckily, I have family living in St. Maarten and they are flying us down for a warm, Caribbean vacation. Ahhh.
3) Sadie is THE BEST!!!! I am totally going to brag about me and her so if you don't want to be grossed out, skip to number 4.
Me: Sadie, why don't we get rid of some of your toys? You have a lot of them and there are children that don't have any.
Sadie: Okay. (As if this is no big deal, she begins tearing through her buckets of stuffed animals and toys.) How about this, and this, and this, oh and I don't use this anymore, and this? She continued for a good ten minutes and was giving up some prized possessions. Finally, there was entire box filled of her toys.
Me: So, why do want to give your toys away now? (A few weeks ago, I had made the same suggestion and received a resounding, NO!)
Sadie: Because you give ALL your stuff away, Mommy.
Me: (lip beginning to quiver and eyes welling up with tears) Sadie, you just made me the happiest mommy in the whole world.
Sadie: (genuinely surprised) I did? Oh, I am so happy for you, mommy. I love you so much. (Big hug and kiss)
Okay, I know this is complete, gratuitous, self-aggrandizement, but it will be with me for the rest of my life. I found out my scans were clear and my daughter said the words above to me on the same day. I'll never be happier than this. Well, never is a strong word, but I am going to revel in and remember it for quite awhile...especially when she's pushing my buttons!!
4) Nathan's scans were also clear. He goes back for a colonoscopy in six months and a follow up with the doctor in a year. They are really confident about his status.
5) Thanksgiving was wonderful. We spent it with my mom's side of the family. Haven't done that in ages. Fun, fun, fun! Loud, loud, loud. Love, love, love.
6) Sadie's a theater-lover. My mom has taken her to see two performances, Once Upon A Mattress and Alice in Wonderland at The Heights Players, our community theater. She and her cousins were taken to see the Rockettes at Radio City for The Christmas Show by their Great Aunt Barbara. She got to pet the camel after the show and now demonstrates to us the signature Rockette move, "you kick, and then kick, and then kick..." And last, but not least, she saw Angelina Ballerina LIVE with her Grandma Lynda. Again...loved the dancing. Wonder where she gets that?
7) She is getting very excited for Christmas. We bought our tree and are decorating it a little every day. She is utterly creeped out by Santa Claus. This is totally fine with me. I rather my daughter NOT want to sit in a strange, old man's lap. And I think I have escaped Elf on the Shelf for one more year.
8) My cognitive testing confirmed that I am road ready. I am back behind the wheel of our ever so sweet minivan. Seriously, people, it has some great pickup. I also found out that I am officially ambidextrous. However, when I think of doing a left-handed cartwheel or using scissors with my right-hand, it gets very ugly.
9) Nathan turns 40 in January. Take it from us, it's good to get "old."
10) We continue to be humbly grateful for all your prayers, well wishes and good vibes as we continue this journey. Have a WONDERFUL, PEACEFUL & HEALTHY Holiday!!!
1) My PET scans came back clear as a bell yesterday! As my friend Laura would say, "Whomp, whomp!" I do have my Brain MRI coming up on the 17th but you all have my back so I'm not worried.
2) Dr. Volm is so pleased with another clear scan that he is giving me off from my January chemo cycle so I have a chance to enjoy a long vacation. Luckily, I have family living in St. Maarten and they are flying us down for a warm, Caribbean vacation. Ahhh.
3) Sadie is THE BEST!!!! I am totally going to brag about me and her so if you don't want to be grossed out, skip to number 4.
Me: Sadie, why don't we get rid of some of your toys? You have a lot of them and there are children that don't have any.
Sadie: Okay. (As if this is no big deal, she begins tearing through her buckets of stuffed animals and toys.) How about this, and this, and this, oh and I don't use this anymore, and this? She continued for a good ten minutes and was giving up some prized possessions. Finally, there was entire box filled of her toys.
Me: So, why do want to give your toys away now? (A few weeks ago, I had made the same suggestion and received a resounding, NO!)
Sadie: Because you give ALL your stuff away, Mommy.
Me: (lip beginning to quiver and eyes welling up with tears) Sadie, you just made me the happiest mommy in the whole world.
Sadie: (genuinely surprised) I did? Oh, I am so happy for you, mommy. I love you so much. (Big hug and kiss)
Okay, I know this is complete, gratuitous, self-aggrandizement, but it will be with me for the rest of my life. I found out my scans were clear and my daughter said the words above to me on the same day. I'll never be happier than this. Well, never is a strong word, but I am going to revel in and remember it for quite awhile...especially when she's pushing my buttons!!
4) Nathan's scans were also clear. He goes back for a colonoscopy in six months and a follow up with the doctor in a year. They are really confident about his status.
5) Thanksgiving was wonderful. We spent it with my mom's side of the family. Haven't done that in ages. Fun, fun, fun! Loud, loud, loud. Love, love, love.
6) Sadie's a theater-lover. My mom has taken her to see two performances, Once Upon A Mattress and Alice in Wonderland at The Heights Players, our community theater. She and her cousins were taken to see the Rockettes at Radio City for The Christmas Show by their Great Aunt Barbara. She got to pet the camel after the show and now demonstrates to us the signature Rockette move, "you kick, and then kick, and then kick..." And last, but not least, she saw Angelina Ballerina LIVE with her Grandma Lynda. Again...loved the dancing. Wonder where she gets that?
7) She is getting very excited for Christmas. We bought our tree and are decorating it a little every day. She is utterly creeped out by Santa Claus. This is totally fine with me. I rather my daughter NOT want to sit in a strange, old man's lap. And I think I have escaped Elf on the Shelf for one more year.
8) My cognitive testing confirmed that I am road ready. I am back behind the wheel of our ever so sweet minivan. Seriously, people, it has some great pickup. I also found out that I am officially ambidextrous. However, when I think of doing a left-handed cartwheel or using scissors with my right-hand, it gets very ugly.
9) Nathan turns 40 in January. Take it from us, it's good to get "old."
10) We continue to be humbly grateful for all your prayers, well wishes and good vibes as we continue this journey. Have a WONDERFUL, PEACEFUL & HEALTHY Holiday!!!
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