1/29/14 - Snow and Other Unexpected Gifts

We've had an interesting few days in Atlanta.  A combination of snow that quickly turned to ice, a city not prepared for winter weather, and businesses and schools all dismissing at the same time created a traffic nightmare.  Fortunately, the kids and I got home safely and our longer-than-usual commutes were nothing compared to people stranded for up to 24 hours on impassable roads in freezing weather. I practically cried from relief once the kids and I arrived home separately to our nice warm house...until our daughter pegged me with a snowball as I got out of the car!

Then, a 75-pound box arrived.  Really.  Once the kids and I lifted (ok, dragged) it into the house, we found quite a surprise.  Myles's former colleagues at Two Degrees/Slalom Consulting sent us a gigantic care package with a note saying they hoped these six large bags of groceries, household items, chocolates, and even a bottle of wine, would be helpful to us during this crazy time. What a thoughtful, unexpected gift!

With the roads impassable, we couldn't get back to hospice last night.  Even though Myles said he was fine on his own and I know he's well cared for, it was hard.  Then along came another gift.  The kids' wonderful orthodontist, Dr. Mary Lynn Crews, and her husband, Chris, who attended high school with Myles, live near hospice and offered to walk through the snow to visit Myles.  It was such a relief to know someone could be with Myles for a visit before he went to sleep for the night.

Today, the kids and I stayed in the house due to the iced-over roads in our neighborhood. One of Myles's two amazing childhood friends who visit him almost every day (and many nights), walked almost 4 miles from his house to hospice to spend the afternoon with Myles.  Myles dozed through most of the visit, but I know it helped him to have Danny there. A big thank you to Danny, and possibly an even bigger thank you to his wife who was snowed in alone today with four young children!

All of you - Myles's friends, family, running crew, former colleagues, and blog readers - remind me every day how much we have to be grateful for.  The kids and I can't wait to see Myles tomorrow as the temperature rises and the ice melts.  Be safe, everyone!

- Marcie

Myles Update, 1/27/13

Just a quick note tonight.  Myles has been resting a lot, watching a lot of ESPN (that's nothing new), and I'm told he was moved from the bed to a chair to have dinner with our youngest son and my parents tonight.

A special thanks to the friends we saw at our oldest son's school musical tonight who treated my daughter and I normally, with no head-tilting pity looks or sad faces. We appreciate you letting us have a regular night watching some really talented kids have a blast on stage.  Thank you for that gift of normalcy.

Good night.

- Marcie

Myles Update, 1/25/14

A close friend informed me today that when posting updates about a person in hospice care, skipping a day or two can cause some people to jump to, well, some not-so-good conclusions.  I didn't mean to scare anyone. So, for those concerned, Myles is still contributing mightily to Zesto's bottom line.  He did branch out today, from the standard vanilla malt to a butterscotch shake after he heard a story involving a Zesto butterscotch shake.  I think my new friends at Zesto were thrown for a loop. Please, no one mention the Chubby Decker to Myles....

The last few days have been good.  We're settling into more of a routine, with the kids coming to see Myles with me at dinnertime.  Thanks to all of you who have provided wonderful dinners for us to take and enjoy together as a family.  It's one less thing for us to worry about, plus, since Myles has spoiled me by cooking for the past 22 years, we'd likely all end up with food poisoning if I cooked.

To those of you who would like to visit Myles, please know he really appreciates your desire to visit. Sometimes he isn't up to visitors, and even if he is, he can only handle a few visitors a day for short times.  Otherwise, we end up in a situation like we did the other day, when the number of visitors wiped him out so much that he barely interacted with the kids when they came for dinner.

Thanks to our amazing friend Dara, who, in a superhuman effort to be the 'gatekeeper' and enforce Myles's wishes about visitors, is sometimes put in awkward situations.  We appreciate and love you more than you know.

I'm falling asleep as I type, so it's time to say goodnight....

- Marcie

Myles Update, 1/22/14

The word of the day is 'overwhelmed'.  Overwhelmed in a mostly good way.  We are completely overwhelmed by the love, support, prayers, comments and posts, and the memories that have been pouring in. They mean so much to Myles.  How wonderful for him to know the impact he's had on people and to get a chance to reminisce and laugh about stories (and pictures) from the past.

I'm also overwhelmed, ok, freaked out, by the number of people reading this blog.  There were 1,601 views yesterday.  And I'm not the writer in our family.  That's Myles's role. I'm doing this for purely selfish reasons - because I can't possibly respond to all the emails and calls I receive checking on Myles while spending time at hospice, being with the kids, and working.  And being the Type A person who feels she has to respond to all emails and texts, communicating to everyone at once via this blog is much less stressful.  But 1,601 people?  Oy.

Myles's first full day in hospice was a really good day.  He says he's much happier here than in the hospital, and it shows.  He's more relaxed and engaged with us.  Talking isn't that easy as it takes a lot of breath, but he still gets more correct answers on Jeopardy than the kids and I combined.  Other than being tired and quieter, Myles is his regular self and we're grateful for that.  We're especially grateful he's comfortable and not in pain. The nurses keep offering drugs, but Myles usually says he's fine and doesn't need them. And no, they're not transferrable.

I'll try to continue to updating this blog, or hopefully convince/coerce Myles to post, as frequently as possible. I'm very grateful to his old friends who stay with him at night so I can go home with the kids without worrying, the wonderful nurses and staff at hospice, and all of you.

- Marcie  

Myles Update, 1/20/14

Today was more of a rollercoaster than most.  With the assistance of our wonderful physical therapist, Myles rolled outside, partly under his own arm/leg power, to sit in the sunshine on a beautiful 60-degree January day for some laughs with old friends.  Alao today, after listening to advice from his doctors, Myles made the decision to stop all treatment for his cancer and move to a hospice facility to enjoy whatever time he has without any more treatment side effects.

As we've learned over the past three years, nothing is simple on this journey.  So, our latest lesson is that despite having arrived at the hospital last weekend with left-side paralysis resulting from bleeding from one of the >20 metastases to his brain, extensive cancer in his lungs, some liver mets, and some pelvis mets, he's not 'acute enough' to qualify for inpatient hospice, which is where he wants to be. Since that's what he wants, of course I'll make it happen.  But now it's just more of a Hospice Hotel....

Which leads us to the best line of the day.  Myles's doctors and nurses have been wonderful.  They've understood how difficult it has been for us to wrap our heads around the fact that about one week ago, Myles was going about his life and working full-time, and now we're reviewing hospice brochures like we're choosing a vacation destination.

They share in our frustration that Myles isn't sick enough for hospice and we laugh with them that Myles is too healthy.  One especially witty nurse, on her way out of Myles's hospital room, looked back over her shoulder and said, "Just let me know if I can do anything to make you more critical!"

So, Tuesday morning, I will contact the hospice destination-of-choice and book a room. Myles is looking forward to moving somewhere less hospital-like than the hospital, the facility looks lovely, he'll still be able to roll outside to the gardens, the kids and I will spend lots of time there like we do now, and most importantly, Myles finally gets control back over this situation and will live his time left, however much that is, on his terms.

We are incredibly proud of him.

- Marcie

Myles Update 1/18/14

Dinner and a Movie, Beskind style!  Tonight the kids and I picked up a movie and dinner, and had a nice evening with Myles watching Despicable Me 2.  He watched some, dozed some, and drank the entire Vanilla Malt we brought him from Zesto (one of his favorites).  Since he hasn't been eating more than half of his meals in a few days, it was great to see him finish the malt.  We may start making a Zesto's run every day!

We're getting a lot of input from the various doctors, physical therapists, and others involved in Myles's care.  Myles is giving a lot of thought to where he wants to go from here and the kids and I are behind him, no matter what he decides.

Myles was getting a bit stir crazy this morning and really needed a change of scenery.   The nurses helped Myles into a wheelchair, we covered him in blankets (no jacket at the hospital), and took him outside.  Although it was brief, it was nice to get out into the sunshine.

Tomorrow, we'll bring his coat and take another walk.  As always, thanks for your emails, posts, love and support!

- Marcie

Myles Update, 1/17/14

Fortunately, today was nice and uneventful.  Myles slept a lot, our cousins came for a lovely visit, and I worked from the hospital room couch.  The physical therapists didn't come by, so Myles didn't pop any wheelies in the hallway (a relief to all patients doing their laps on two legs, I'm sure).

It's been a long week and the kids and I are ready to get some rest.  Good night all!
- Marcie

Myles Update 1/16/14

Every morning at the hospital, the staff and Myles set a goal for the day.  First it was sitting up, then sitting in a chair, etc.  Today when I arrived at the hospital, the goal said "Clean Hair."  I read it a few times, trying to see if it really said something like "Move to Chair," but it never changed.  Just "clean hair."  Well, it turns out that when you're 6'1" and tower over all the nurses and need help getting around, moving to the shower for clean hair isn't the best option.  So, our nurse, in a Caribbean accent told Myles, "Well, you can do what the ladies do."  This didn't scare Myles.  He is, after all, a goal-oriented guy.  If he can run a 26-mile marathon he's man enough to "do what the ladies do."

As it turns out, "the ladies" use some sort of shower cap contraption that is heated in the microwave, put on your head, and contains water and shampoo that is rubbed onto your hair.  After that, you towel dry your hair.  Myles was not very forthcoming about how rubbing a warm shower cap with shampoo that's not rinsed out cleans your hair, but who am I to tell him he didn't reach his goal today? I'm just mad there are no pictures of this spa experience.

I did get to witness some excitement today.  Myles's physical therapists helped him move into a wheelchair and he did one lap around the floor.  I was initially puzzled how, with one good arm and leg, he could do much more than spin around in circles, but there's a trick involving using his good leg as a rudder. He rolled around the floor weaving like a drunk driver, but he finished lap #1. Pretty terrific!  It was wonderful to see him up and out of bed.

Myles went through many of your messages, posts, and wonderful words of support this morning and they mean so much to him.   You guys are the best!

- Marcie

Message from Myles

As a blogger, reaching 1,000+ readers of an individual post is something of a milestone, so I have to say I was disappointed that it was Marcie's post that first reached this threshold, not one of my own.

This post comes to you on day five of my stay at Emory University Hospital, where things are much different than they were just last week, but not the things that matter. Where we're treating and what we're treating is new, but the goal is the same.  I'm so grateful for your thoughts, prayers, messages, calls, and visits.  They remind me how lucky I am.

Myles Update 1/14/14

Today was Myles's first full day in a non-ICU room.  He also started his whole brain radiation treatments which seemed to go smoothly, although he said the mask is very tight and somewhat uncomfortable. Fortunately, the radiation lasted 'only' about seven minutes.  Myles had visits from the OT and PT folks, and the PT folks ran him through a routine that worked him out as hard as when he was doing P90X 7 days a week!

The two PTs brought Myles to sitting and standing positions, both with support, both of which were challenging.  Just try sitting and standing with very little control over an arm and leg! The doctors are hopeful once the radiation kicks in and the swelling and inflammation decrease that Myles will regain some control of his left arm and leg. But, as we say, at least it's not his 'phone hand'!

He had lots of visitors today including a cousin, friends who work at the hospital, and a special childhood/teen years reunion with three of his best buddies, complete with embarrassing yearbook pictures and inscriptions.  It was great to see them all together.

Again, thanks for the outpouring of love, supportive messages, prayers, and treats.  We are an incredibly lucky family!

Myles Update, Monday night 1/13/14

Wow.  Just wow.  I am stunned by the incredible reaction we've received from my post last night about Myles.  We are overwhelmed by the kind thoughts, funny stories, love, and of course, food.  Thanks to you all.

Total was wonderfully uneventful.  Myles was more awake and chatty than he was over the weekend. His head CTs remained stable, so tonight he was moved out of ICU to a regular room.  While this is good news for obvious reasons, the move was bittersweet for the kids and I.  The care Myles has received in the Neuro ICU was outstanding.  It is a lovely, warm environment where families and friends are encouraged to spend time with the patient.  Each ICU room has a "studio" off the patient's room with chairs that turn into beds and a table and chairs.  It's a comfortable space where the kids and I could hang out, do homework, watch movies, and just a few feet from Myles, but not crammed up against his bed constantly saying "are you comfortable, are you ok?" (not that I would ever do that, of course). It's good for the patient and their families and I'm certain helps patients recover faster when their loved ones can be comfortably nearby.  The ICU doctors, nurses, and staff were warm and encouraging and made us all smile and laugh.

So while we're sorry to leave that hotel-like womb, we're encouraged Myles is stable enough to no longer require constant monitoring.  His face was cast today for a hockey-like mask for his whole brian radiation which is scheduled to begin Tuesday (too bad no one took a picture of that).  Myles also had a procedure to insert a filter to catch any potential blood clots headed to his lungs since he can no longer be on blood thinners due to the brain bleeds.

Lest any of his regular blog readers think that recent events have changed Myles, when the doctor explained the filter to Myles, and asked if he understood the procedure, Myles responded, "So basically, you're giving me an IUD for blood clots?"  The staff burst out laughing and have passed that comment around to each other all day.

Thanks to all for your love and support, especially to Myles's amazing best friends since childhood who practically fought each other to spend the night with Myles in his new room, allowing me sleep at home with the kids.  And as I told one of them yesterday, "don't give up on Myles yet - he likes to beat the odds!"

Sleep well all,
Marcie

Myles

Hello, this post won't contain any videos, 70s references, or Myles's usual witty writing style. Myles's cancer began 2014 pretty aggressively and he's currently in the hospital ICU.  Myles has loved writing this blog and your feedback, support, and love mean so much to him.  So while he's taking a blog break to fight his cancer in the hospital (or more likely snore), I will use this venue to update everyone on his condition as frequently as possible.

Myles woke up in the middle of the night two nights ago and could not move his left arm.  Soon after, his left leg stopped moving normally and he was taken to the hospital by ambulance.  After many tests, we have learned that the cancer has now spread to his brain, and at least one of the larger lesions began bleeding, which led to the problems with his arm and leg.  

Fortunately, the bleeding appeared to stop yesterday afternoon.  He's being given large doses of steriods to reduce the swelling caused by the bleeding, and fortunately, his scans have been stable since yesterday afternoon.  The current plan is for Myles to begin radiation therapy tomorrow to hopefully shrink the lesions.

Myles is not in any pain; he's been sleeping a lot, watching a lot of football (what else is new?) and is in relatively good spirits given the situation.  The kids and I have been spending lots of time with him this weekend around their usual activities - soccer, musical rehearsals, and getting together with friends.

Like we have throughout the past three years, we don't let the cancer define Myles or our family, so the kids have continued their usual flurry of activities, around which we hang out together at the hospital. We greatly appreciate all the food, kid shlepping, more food, emails and texts, and more food.  But the greatest gift you can give the kids and I is to treat us normally. If we're not at the hospital, we likely don't want to talk about the hospital, or cancer for that matter.  Just give us the gift of normalcy.  We love that.  Plus, it has no calories.

I will update this blog as frequently as I can.  Myles will read your comments and posts, and they mean so much to him, so keep them coming!

Love to all,
Marcie