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Posted 2018-08-27T21:16:21Z

Our Guardian Angel

On behalf of our beautiful Molly,

Today at 1 pm after a strong fight, Molly joined her father and horses in heaven.  She and her family are so incredibly grateful for the tremendous support over the last year.  She passed peacefully after some hard days.  Her grace and strength through this process have been unbelievable.  We will post here the details for the funeral arrangements when they are confirmed.  We all love her, we all would miss her. [...]

Posted 2018-08-26T01:55:20Z

Keep Praying and Hoping

We were hoping to get an update out sooner and Molly really wanted to be the one writing this or at least dictating it to us.  Unfortunately, this is a tough one to write and she hasn't been up to it, so I'm writing it on her behalf.  For those that don't know me, I'm Molly's sister, Barb.  Molly has done such an incredible job updating everyone on her battle with this horrible disease with humor, wit, and grace.  Try as I may, I don't think I'll be able to match that, so I'll keep this entry short.[...]

Posted 2018-08-03T02:29:34Z

Cancer stinks

Wow, I really have some catching  up to do! Looks like I last posted right before the Fourth of July holiday.  I will try to do a brief synopsis of July (you know, though, that brevity is not my strong suit!).[...]

Posted 2018-06-29T03:25:51Z

Getting back on my horse (figuratively. Still waiting for literally.).

I had a great appointment with Dr. Lao yesterday.  We have a new care plan that gives me hope and confidence!  Since the steroids are prohibiting me from getting immunotherapy right now, I am going to start the BRAF therapy again.  I did this in December, January and February when I was recovering from the spinal fusion surgery.  We had good results with it, and saw tumors shrinking.  BRAF is an oral pill therapy that I just take at home daily, no needles required, and fewer trips to Ann Arbor!  So I am thrilled to get back on the protocol, especially since that recent chest CT revealed new growth in my lungs (hence the shortness of breath that I experienced).  You might be thinking, why would I have stopped the BRAF protocol in February if it was being effective?  That's what I asked too.  It turns out that the BRAF protocol is only effective while it is being administered, as opposed to immunotherapy which can keep working for awhile after it is in your system even if you are not getting additional infusions.  Additionally, the body will reach a point with BRAF where the body gets saturated and the BRAF is no longer effective (there's a word for this that I am trying to remember but I can't quite think of it at the moment).  There is no way to know how long the BRAF will be effective for each individual.  So BRAF is like a bridge therapy, an effective short-term therapy,  perfect for my situation where I need a little more time to wean off these steroids.  The new care plan has me on BRAF for about three months and then we plan to restart immunotherapy, and we might go back to the two-drug infusion.  Dr. Lao said my case is very unique with all the changes and switches of therapy protocols, and we are in uncharted territory.  It is fascinating and scary all at the same time.  I am just thrilled to start the BRAF and attack these darn tumors![...]

Posted 2018-06-04T19:38:27Z

Deja vu all over again

I think I'm just going to tell my docs to stop looking at my brain.  I went to see Dr. Kim (radiation oncologist)  right before Memorial Day weekend and she had a look at my 5/23 brain MRI. She found another "collection of cells" that she wants to radiate.   She did not call this a new brain tumor.  She said that a shadow had been in the previous April MRI but it was ever so slight.  Since April, more cells have "collected" on-site, i.e. the lawyer in me knows she is saying that a tumor has begun to grow there.  She wants to radiate while it is small, which gives a great chance of eradicating the entire spot.  That's a good thing, but all I can think of is:  get ready for another bald spot on my head.  Grrrrr.  No date yet for this brain radiation.  And I get to wear the iron maiden mask again-  lucky me![...]

Posted 2018-05-23T00:57:28Z

A little bit of normal

I don't look like myself anymore.  I have the fat round chipmunk cheek face that comes with having been on steroids for quite some time, often referred to as moonface.  I hate it.  I haven't been able to get my hair cut or colored since July 2017, and it's been slowly thinning and falling out since I started on all these meds way back when, so the gray has taken over and there is no style other than brush it straight.  Oh and let's not forget the 3 permanent bald spots I got from the brain radiation.  Awesome.  I got to feeling rather down recently.  So I decided to pull myself up by the bootstraps and go on the offensive against all this madness.[...]

Posted 2018-05-18T11:32:28Z

Don't call it a comeback (yet!)

It's been almost three weeks since I was discharged from the hospital for the internal adrenal bleed and the blood infection, my apologies for not keeping you all up-to-date better.  It took longer than I anticipated to get myself back in the swing of things after that ICU stay.  As in, I just climbed the stairs to the second floor of my house YESTERDAY for the first time since discharge on April 30. Seventeen days to climb a flight of stairs- what?!  That means I have had to rely on Aaron bringing  clothes downstairs for me to wear during that time.  Trust me, hilarity has ensued!  Try letting your spouse or sigificant other dress you for a few days, I bet you get some surprises about what he/she likes you to wear![...]

Posted 2018-04-24T14:10:33Z

Cheers to continued improvement!

I'm so happy to report that I am continuing to get motor function back! I am walking without assistive devices! Stairs are still difficult but I can manage. I have this residual "toe drop" which is slightly annoying because it's a trip hazard but we are working on strengthening the right muscles. My handwriting is mostly back, it looks a little different than before, the brain is a strange and mysterious thing.  I'm just happy to be able to walk, talk, sit, stand, move around, and get out of the house a bit![...]