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Sunday, right before mass started.

Seven year old: “Mom – do you have a paper towel?”

Me: “No, I don’t carry paper towels. WHAT IS WRONG?”

Kid: “I have a mouth full of blood and don’t know what to do with it.”

Me, not skipping a beat: “Swallow it.” (Daughter gagging in the background).

Kid: “Swallow it?”

Me: “Yes swallow it right now.” (and then hissing) “do not, DO NOT MESS WITH YOUR LOOSE TOOTH DURING CHURCH, I MEAN IT. I will pull it as soon as we get HOME.”

Daughter scoots away a bit.

During the longest hour, he would look at me slyly, grinding his teeth together and grinning while I grimaced and whispered “Stop it”. I envisioned a Carrie-like blood bath right in the pew. I saw myself interrupting everything shouting “It’s just a loose tooth!” We made it. Next time we will sit on the end of the pew at least.

So far this week no doctor appointments, no crises, just normal activities like a regular person might have – a surprise lunch with high school friends, coffee with my cancer buddies, cooking dinners (for the first time in awhile), and yesterday we went to a movie. Just regular mom stuff. I love it. I have started getting the kids ready for school. This is completely beyond my comprehension. This is the third school year starting out as a stage 4 melanoma patient. How is this possible?

Everyone tells me I look great and don’t look sick. I know they are lying since I have Bozo the Clown hair. I was trying to let it grow out but it just gets bigger and crazier.

My next scans are Friday the 26th, then a doctor’s appointment the 30th to find out if I will continue in the trial. Obviously the drug is working. I’d be a goner by now if it wasn’t. Is it working enough for Merck though? Will they keep giving it to me? I pushed my doctor last week to lay all these details out and he resisted. He did say that if this isn’t working, or isn’t working well enough, we will try to find something better. So there is time and a chance for something else. I found that very encouraging versus where we have been the last couple of months, including him asking about my final wishes in case something sudden happens and Alan asking about burial plans. From hard times to hope.

The down side of a clinical trial is that even if the drug is working but not enough or Merck isn’t happy with me for some reason, there will be no way to get this drug again or any of its competitors until they finish trials and are FDA approved in 2014 or 2015. If this all works out I can keep getting infusions every three weeks. This is the easiest treatment I’ve had which makes it a double bonus.

I don’t usually post my MRI results, but here you go curious cats, this is what I’m up against, we are hoping and praying for something better than this and NOTHING NEW. I simplified it for you.

Buckle up, it’s ugly.

6/27/13 There is a mobile, malignant right ventricular mass extending from the right ventricle outflow tract into the main pulmonary artery and invades the right aorta. The mass is 62 x 40 X 56 mm. It slips forward into the pulmonary artery causing at least mild obstruction. The mass obstructs the outflow from the right ventricle. A smaller (19 x 11 mm), mobile section falling into the right atrium, resulting in at least moderate tricuspid valve regurgitation. There is a small pericardial effusion. The main pulmonary artery is borderline dilated.

Official words from my doctor “Not Horrible”. It hasn’t grown much since May so I take that as a good sign. Now SHRINK ROSCOE!

I’ve also have the two tumors in my brain (treated in November) which continue to swell about 1mm a month from radiation-related “effects”. This is not related to the trial, but puts me at risk of seizures. My radiation oncologist wasn’t worried “Your problems are so much bigger than this.” He said. Very smart guy but not as good with the “oncobabble” as I like to call it. This is where a member of the oncology field can make almost anything sound less horrid. Almost anything. At one point I accused him of something saying “Come on – isn’t that complete Bullsh***?” Sometimes I can be a challenging patient.

How I am functioning at all? That’s called Grace my friends, pure Grace. We are hoping and praying for improvement, tumor shrinkage, and no new evidence of mel. Please join us. I will let you know the 30 th.

Surprisingly I’m not freaking out about the “what next”. I am just so peaceful and full of joy and gratitude to wake up every day and live.

Please save the date OCT 19 for the third annual Music City Miles for Melanoma. Team Willett will be out in force again this year. In the first two years you have donated almost $10,000 for the Melanoma Research Foundation to the team. Thank you! I will post a sign-up link when it’s available.

I and my family are so deeply grateful to everyone who works in and supports melanoma research including those who volunteered for trials, many of whom gave their lives, so that I am able to sit here and write for you today. I am privileged to be in one.

Peace to you all,

Amy

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