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.
Wednesday, January 15, 2014
Tuesday, January 14, 2014
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!
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
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
Sunday, January 12, 2014
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
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
Monday, December 30, 2013
2013: The Year Cancer Kicked Back
Welcome to the oh so cliché Year in Review post. This is when good writers rehash some of their posts from the past year, essentially pulling off a long and hopefully entertaining column with relatively little effort. With that in mind, here we go...
The year began with some not-so-great news and some pretty good (Huey Lewis and the) News. We learned that the chemo routine I'd started in the fall wasn't doing much good. The cancer was still growing, albeit slowly. So, as Huey and I both said at the time, I want a new drug.
In February, I was nearly trapped in NYC, but pulled my best Snake Plisken and escaped. We also decided on that new drug, Stivarga. It happened to be my most expensive oral drug to date, retailing for $11,000 a month. But it gave us some hope since it was a new approach to stopping the spread of my cancer.
March came in like a proverbial lion, with an ER visit that turned out to be a false alarm. Soon after, my hip and leg pain returned with a vengance. Scans confirmed that it was not a recurrence of cancer in my pelvis, which was of course my biggest fear. I finished off the month with an off topic post, explaining the Story of Passover, with a modern take.
Things were pretty quiet in my world in April, although I did debunk a couple of chemo-related myths, Amazing Randi style.
May brought a mixed bag of news. We learned Stivarga wasn't working - that's the bad part of the mix. The good part was meeting and becoming a patient of Metallica's personal Physical Therapist. Soon after, my pain diminished, and my guitar solos approached legendary status.
Things started getting a little dicey in June. During a trip to Johns Hopkins, we discovered what might have been a small clot in one of my lungs, and a whole bunch of fluid. The blog never really reflected it, but I started feeling pretty crappy and stayed that way for much of the summer. I had oxygen tanks with me 24/7, and generally started to look and feel like a terminal cancer patient. Spoiler alert - I got better.
By the end of July, I'd had another draining of the lungs, and had started on another new drug, Zaltrap. I started feeling better, and the scans showed why. No new growth. Had we finally found the magic bullet? Not really, as a magic bullet would reverse cancer's course, not just hold it at bay. But it was a step in the right direction.
I told the story of Sally (not her real name) in August. The story itself was inspiring, but it also inspired a whole bunch of people to try to guess Sally's real name. I had to point out that people at my kid's former school were barking up the wrong tree thinking it was a staff member there. The thing to remember from that story isn't Sally's true identity. It's the phrase "Bronze the Kayak!"
I spent much of September feeling like a lab rat. There's no better way to describe what it's like to participate in a drug trial, with its regimen of tests, dose administration, and scheduled bathroom breaks. We had high hopes for the trial, but my cancer became decidedly worse, and I dropped out of the trial. It was worth the risk, and I'm hoping to find a new trial again soon.
Most of the year, I was focussed on October 26th. That was the day of my twins' B'nai Mitzvah, and it was really important to me that I be in decent enough shape to enjoy their special day. It turned out perfectly. I was feeling good, they did a great job, and our friends and family had a great time too.
While I didn't post anything in November, I tried to explain in early December that I'd been in a pretty dark place, emotionally, much of the month. I'd lost a lot of weight, and I'd been having pain in my jaw that was pretty intense. Combined with all the routine side effects, I was pretty depressed. But I got some help working through it, and I've been feeling pretty good this month, physically and emotionally.
In December, I was reminded that I'm not in this alone. I wasn't referring to my supporters, as I hear from so many of you often in response to these posts and elsewhere. I meant that my treatment and my progress impacts my family just as much as it does me. My oldest son was upset to hear that I might be delaying treatment over the holidays, granting myself a six week break. He knew that it was during shorter breaks earlier in the year that things got worse, and he was scared. I talked to Dr. Z, scheduled what Marcie calls "chemo light," and made everyone happy, including myself.
The year ended with a tooth extraction, some reshaping of the exposed dead jawbone, and a soft food diet. Things could be worse...
Cancer took a few shots at me this year, and I was able to absorb its blows. I'm grateful for that, and for each of you reading this who keep me in your thoughts and prayers. I'm blessed with an amazing family. And lest I forget, Dr Z and his team, from the front desk folks to the techs, to the nurses, are the best there is. I'm in good hands.
Here's to 2014 - may it be a year of happiness, prosperity, and good heath for each of us!
The year began with some not-so-great news and some pretty good (Huey Lewis and the) News. We learned that the chemo routine I'd started in the fall wasn't doing much good. The cancer was still growing, albeit slowly. So, as Huey and I both said at the time, I want a new drug.
In February, I was nearly trapped in NYC, but pulled my best Snake Plisken and escaped. We also decided on that new drug, Stivarga. It happened to be my most expensive oral drug to date, retailing for $11,000 a month. But it gave us some hope since it was a new approach to stopping the spread of my cancer.
March came in like a proverbial lion, with an ER visit that turned out to be a false alarm. Soon after, my hip and leg pain returned with a vengance. Scans confirmed that it was not a recurrence of cancer in my pelvis, which was of course my biggest fear. I finished off the month with an off topic post, explaining the Story of Passover, with a modern take.
Things were pretty quiet in my world in April, although I did debunk a couple of chemo-related myths, Amazing Randi style.
May brought a mixed bag of news. We learned Stivarga wasn't working - that's the bad part of the mix. The good part was meeting and becoming a patient of Metallica's personal Physical Therapist. Soon after, my pain diminished, and my guitar solos approached legendary status.
Things started getting a little dicey in June. During a trip to Johns Hopkins, we discovered what might have been a small clot in one of my lungs, and a whole bunch of fluid. The blog never really reflected it, but I started feeling pretty crappy and stayed that way for much of the summer. I had oxygen tanks with me 24/7, and generally started to look and feel like a terminal cancer patient. Spoiler alert - I got better.
By the end of July, I'd had another draining of the lungs, and had started on another new drug, Zaltrap. I started feeling better, and the scans showed why. No new growth. Had we finally found the magic bullet? Not really, as a magic bullet would reverse cancer's course, not just hold it at bay. But it was a step in the right direction.
I told the story of Sally (not her real name) in August. The story itself was inspiring, but it also inspired a whole bunch of people to try to guess Sally's real name. I had to point out that people at my kid's former school were barking up the wrong tree thinking it was a staff member there. The thing to remember from that story isn't Sally's true identity. It's the phrase "Bronze the Kayak!"
I spent much of September feeling like a lab rat. There's no better way to describe what it's like to participate in a drug trial, with its regimen of tests, dose administration, and scheduled bathroom breaks. We had high hopes for the trial, but my cancer became decidedly worse, and I dropped out of the trial. It was worth the risk, and I'm hoping to find a new trial again soon.
Most of the year, I was focussed on October 26th. That was the day of my twins' B'nai Mitzvah, and it was really important to me that I be in decent enough shape to enjoy their special day. It turned out perfectly. I was feeling good, they did a great job, and our friends and family had a great time too.
While I didn't post anything in November, I tried to explain in early December that I'd been in a pretty dark place, emotionally, much of the month. I'd lost a lot of weight, and I'd been having pain in my jaw that was pretty intense. Combined with all the routine side effects, I was pretty depressed. But I got some help working through it, and I've been feeling pretty good this month, physically and emotionally.
In December, I was reminded that I'm not in this alone. I wasn't referring to my supporters, as I hear from so many of you often in response to these posts and elsewhere. I meant that my treatment and my progress impacts my family just as much as it does me. My oldest son was upset to hear that I might be delaying treatment over the holidays, granting myself a six week break. He knew that it was during shorter breaks earlier in the year that things got worse, and he was scared. I talked to Dr. Z, scheduled what Marcie calls "chemo light," and made everyone happy, including myself.
The year ended with a tooth extraction, some reshaping of the exposed dead jawbone, and a soft food diet. Things could be worse...
Cancer took a few shots at me this year, and I was able to absorb its blows. I'm grateful for that, and for each of you reading this who keep me in your thoughts and prayers. I'm blessed with an amazing family. And lest I forget, Dr Z and his team, from the front desk folks to the techs, to the nurses, are the best there is. I'm in good hands.
Here's to 2014 - may it be a year of happiness, prosperity, and good heath for each of us!
Monday, December 16, 2013
Taking One for the Team (and for myself)
It's been a while since I live-blogged from the chemo room here in Johns Creek. I just thought it was a good time to catch everyone up on the latest. You may be wondering why I'm here when at last report I was headed for a nice long break from chemo. Well, that's where the title of this post comes in.
The truth is, for many of us chronic cancer patients, knowing when to treat and when to rest is at best difficult, and at worst, a Sophie's choice. Stay on treatment too long and you stop being able to do the things you want and need to do - being truly present with your family, working, enjoying time with friends. Take too long a break and your disease could progress to the point that a) the treatment needed is harsher, or b) you no longer have viable treatment options.
I had been enjoying the break, I must say. And as a practical matter, my chemo always has to involve a Wednesday visit to Dr Z's. Either I start on Monday and have my take home pump removed on Wednesday or I start on Wednesday and d/c the pump on Friday. So with Christmas and New Year's days falling on Wednesday this year, it would have been January 6th before I could have had another treatment.
Faithful readers will recall that the last couple of times I've had lengthy breaks, things didn't go too well. I ended up feeling crappy from cancer, as opposed to crappy from side effects. But the crappy from cancer is obviously a more serious matter. I had been conveniently ignoring this little fact while making my plans to go chemo-free from Thanksgiving until week 2 of January.
It was the team, meaning my family, that reminded me. Our oldest confided in Marcie that he was worried I would get really sick again if I was off chemo that long. She shared his concern, and shared it with me. I began to wonder, was I being selfish by foregoing treatment voluntarily? Maybe not, after all even Dr. Z had admitted he'd pushed me about as far as he could without some kind of break after November. And lest we forget, I'm still dealing with the dreaded osteonecrosis in my jaw, the pain from which has subsided, leaving only the dead tooth and bone scheduled to be surgically removed December 30th.
It didn't take me long to work out the decision this time. Adam and Marcie were right. Six weeks off would have been too long. So I'm here today, 3 weeks after my last treatment, then will have another 3 weeks until my next one. That's the best plan I could come up with - for my family and for me.
-----
As we all look forward to time off from work and school, it is my hope that each of us is able to have some moments when we reflect on and perhaps connect with those most dear to us.
Happy Holidays to all, and thank you for supporting me through another year of life's challenges.
Tuesday, December 3, 2013
Of Side Effects and More
With the rain outside as my soundtrack on this steroid-induced sleepless night, it dawned on my that I went 0-for November in blog writing. It's not that I haven't had much to say; rather, I haven't known just how to say it, and as you'll learn, I wasn't always in good enough shape to write.
Lest you worry that my typing at 0-dark-thirty is disturbing my beloved or our offspring, I have banished myself to the recliner in the living room, a full story below those-who-can-sleep. I've had a cough (which is 50/50 side effect vs cancer) that makes it hard to sleep horizontally, so Marcie suggested the recliner, having remembered from her brief sojourn there several years ago that it was "surprisingly comfortable." Perhaps it's my 8 inch longer frame, but I've come to the conclusion that my SleepNumber is not "lumpy."
Side effects. I have been set upon by them like Auburn fans swarming the field after rolling the Tide. And for the record, while beating Alabama, including that miracle of a final play, was an example of great coaching, beating Georgia was pure dumb luck. Nothing wrong with a little luck en route to a championship, but let's call it what it was.
Side effects. Let's start with a list, each of which was a part of my November:
The familiar:
Heartburn
Constipation, lasting several days, followed almost instantly by:
Diarrhea
Fatigue, in varying degrees, culminating in last weekend's couch-fest.
Depression
The new:
Weight Loss - my fighting weight was always 175. I now need to eat a 16 lb. Pound Cake to get back there.
Osteonecrosis of the Jaw - Those of us who took Latin and those of you who attended Med School already know what this is. For the undereducated rest of you, it means bone death. And it hurts, badly. In fact, in my list of most painful maladies I've experienced, in which 1/3 of the score is based on intensity of the pain, 1/3 on duration, and 1/3 on the coaches' poll, I'll put exposed dying bone in one's mouth a close number 2 to a middle of the night leg cramp. The cramps get the edge because once they start there's no pill you can take fast enough to head them off. At least with the osteonecrosis, since it last for days at a time, you can knock it down from an 8 to a 4 with narcotics. Just beware, the side effect from treating this side effect is constipation (see above).
UPDATE - awesome leg cramp scene from Cosby Show: https://www.youtube.com/watch?v=0_v1phYhU3I#t=110
UPDATE - awesome leg cramp scene from Cosby Show: https://www.youtube.com/watch?v=0_v1phYhU3I#t=110
Where does ONJ come from, and why the jaw? It turns out that one of the drugs I've been on for years, Xgeva, does lots of good in preventing the spread of bone metastases, but leaves one open to lots of bad in the jawbone. Xgeva, and many other drugs, work by slowing down the natural cycle of bone cell death and replenishment. And that's great if you're trying to cutoff the energy cancer cells would piggyback on to take hold in a new spot. For reasons unknown, over time, these drugs tend to over-collect in the jawbone, leaving it vulnerable if, say, the gum is eroded and the bone exposed. Tooth extraction can be the culprit, or in my case, even a routine root canal during which the gum is injured by an instrument or by the clamps around the tooth. Something that minor would almost always go unnoticed, but combine a slow healing process on the gum with a little Xgeva, and boom - bone starts dying.
It's not any one or two of these side effects that has gotten to me these last few weeks - it's the combination of them. So Dr Z and I have agreed it's time for another break from chemotherapy. In fact, after we walked out of the exam room yesterday he turned to his staff in the hallway and said "I did this, I take full responsibility for Mr. Beskind feeling this crappy."
Maybe it was that admission, but I haven't needed a pain pill since, and I ate a proper meal last night. Actually, for the latter, I'll thank my friend Rebecca, whose response to us bailing out on her latke party at the last minute (due to my aforementioned couch fest) was to bring us the leftovers. Delicious and filling!
Meanwhile, the rain softens outside my living room window. Perhaps sleep will soon follow.
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