Tag Archives: Illness

My Hero Of The Week

Polish discus thrower, Piotr Malachowski, won a Silver Medal recently at the games in Rio. But it’s not what he did at the games that mattered, it’s what he did when he returned home.

Piotr heard about a three-year old boy suffering from a rare form of eye cancer called retinoblastoma. The little boy needed surgery that could possibly save his life, but it cost 126,000.  Piotr immediately put his Silver Medal up for auction in hopes it would raise 84,000 for the surgery. A third of the money had already been raised by the Polish Foundation, Siepomaga.

The price of the medal had reached 19,000 when Piotr removed it. It seems two Polish billionaires, Dominika and Sebastian Kulczyk agreed to purchase the medal for the remaining cost of the surgery.

I don’t know of a more important medal that was won at Rio and I don’t know of a more worthy participant.

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Let’s pray Piotr’s compassion and the generosity of everyone involved results in a happy and healthy life for this little boy.

God Bless them all.

 

When It’s Not Funny

Let me start by saying that my sense of humor has few limitations. I think we can, and should find laughter wherever possible. Life can be too serious so I allow people to joke about a wide range of topics and I usually don’t care about political correctness. I think laughing at ourselves is a good thing and helps us really appreciate and understand humor, which in turn makes our lives more fun.
But I have limitations. I don’t think there’s anything funny about tragedy or sickness. While I understand the healing power of laughter and how humor helps us cope with our illnesses, that’s a personal choice between those who are ill and anyone they care to share it with.

So when I read today that Will Farrell is going to star in a black comedy about Ronald Reagan’s battle with Alzheimer’s disease, beginning with his last term in office, I was more than a little upset. Apparently, the premise of the movie is about an intern who has to convince Reagan that he’s an actor playing the President Of The United States.

Alzheimer’s disease is not funny. Dementia is not a punchline.

This isn’t a political statement. It doesn’t matter what political party you favor or whether you loved Reagan or hated him as President. The man was a human being with a family who watched him battle this dreaded disease for many years. A family he loved but could no longer remember.

I suppose I should expect noting less from Hollywood but this seems to take meanness to a new level. Of course this is America so I respect their right to freely create whatever type of entertainment they feel will make them their share of shock dollars.
I can state the obvious and ask whether these people would make a comedy movie about their own fathers battle with Alzheimer’s, but I think we know the answer to that question.

Five and a half million people in the United States have Alzheimer’s. MIllions more love and care for these individuals who were once as active and productive as the rest of us.

Alzheimer’s disease is not funny. I don’t know why that’s so difficult to understand.

Fight Like A Kid

Dear Matthew,

Where do I begin? The details are all in front of me; done with chemo, scans are clean and your port has been removed. Based on how you responded to treatment, the doctors don’t expect this to ever come back again. You’ll still have to go for scans every three months for a year and then a little less for five years but that’s part of the deal.
So this nightmare that began four months ago but feels like a year is behind you. Still, a part of me wants to try and make sense of what happened, to transfer thoughts and feelings into words. But we both know that’s not possible. Words like that don’t exist for people like us.

I can’t explain what we felt the day we found out that the simple surgery you had to remove what we all thought was a hyperactive lymph node, was much more serious. You were still sedated as we drove home in silence. Your dad carried you into the house, your grandmother went with him to get your sister and I sat in the car with your mom. For as long as I have breath, Matthew,  I’ll never forget the sound of pain that came from somewhere inside her. All these months later and I can still hear it.

A few days later your parents told you that you had (Batman) Jokers in your body and they had to be removed. I can still see you coming down the stairs and walking toward us with your shoulders slumped saying, “Tomorrow’s not going to be a good day, I have to go to the hospital in New York because I have Jokers in my body.” Then you went to sit with your sister and watch television. We couldn’t help but look at you and feel guilty for not being able to tell you everything. As you sat there and laughed at the TV, you had no idea there would be radioactive liquid to drink the next day, more anesthesia, a lumbar puncture, an IV line and a series of PET and CT scans. You had no idea you were going to be thrown into a world you couldn’t possibly understand. In your mind you were healthy, had a motor that never turned off, were enjoying the summer and had just celebrated your seventh birthday the month before. We were at the beach a few days earlier and you had plans for us to go back the following week. We never did but we will soon.

I know you must have been confused, Matthew. The truth is, we all were. Like you, we didn’t understand how this could happen. The thing is, adults eventually find answers to the questions they ask; but children ask questions that adults have no answers for. And so it was with you. The question of why had no real answer, at least not one that made any sense to you. So the first several weeks and beyond were especially rough for everyone. You see, there is no segue into this world of chemo. Your parents sign release forms that clearly explain the risks and side effects, both short and long-term. It’s not pretty but there are no choices. Time is not a friend. It owns you and you have to find a way to buy it back. You were given a schedule and a dozen different kinds of pills. Sometimes you had to take as many as twenty a day. Some tasted really horrible and no matter how small it was crushed or how much ice cream or pudding you put around it, it was hard to disguise. The pills were constant, as was the negotiation with you to swallow them.

So you take a happy and energetic seven-year old, pull him out of his world, tell him something is wrong with him even though he feels fine, stick him with needles, force disgusting mood altering pills down his throat, sew a port in his chest, put him in the car at 5:30 in the morning for a  four to five-hour round trip ride to the hospital, spend anywhere from 8-10 hours there, hook him up to drip lines that make him feel even worse, cause him to have sores in his mouth and a fever, then do it all over again the next day. What would any seven-year old do? Pretty much what any adult would do. They rebel.

You rebelled until you came to an understanding. Until those walls became your life. It took time and lots of tears, but you adjusted your old life to fit your new one. Not an easy thing for a seven-year old to do. By the time you were done, you took needles without complaint or support, walked into your treatments with an attitude, spoke your mind and asked your own questions. You came to accept what you fought and made us laugh in the most difficult moments.

When a doctor, in the middle of your treatment came into your room and asked if there was anything they can do for you, you would reply, “Yeah, get me out of this place.”

When you had to stay in the hospital for a few days and your mouth was swollen and filled with sores and you couldn’t eat and were hooked up to morphine and antibiotics and in obvious pain; the doctor would come in and ask you to rate the pain on a scale of one to ten. You would always say zero because you thought they’d let you go home.

You would never admit to pain or feeling tired or weak even when we knew your blood counts were close to nothing, even when the sores in your mouth made the doctors cringe. You pushed yourself to do things when you had no business being upright. When you were in between treatments and found a little more energy, you’d always want to go outside and play soccer or baseball or basketball. It was hard to watch you labor through those moments, to see you out of breath, to listen to you ask for a rest. But that was your way of fighting, of letting this disease know that it slowed you down but it hasn’t taken you out. So I wasn’t surprised. That’s just who you are. You don’t back down. You fight like a kid.

But you know, no one goes through this alone and you were no exception. I really don’t know what to say about your parents. Aside from watching their child go through this, they had to learn a different language, one that included medicines, tests, protocols, surgeries and scheduling. There was no class to take, no instructional video to watch, It was on the job training and they were relentless with you. When you pushed back, they pushed back harder. When you fought, they fought harder. When you cried, they held you.
They stayed together, asked all the right questions, developed relationships and never left your side. Not for a moment. Not once. They were amazing.
Your sister who is four years old was confused at first but eventually understood you were sick and made it a point of taking care and defending you whenever you were home with her. She took care of you in ways only a four-year old can and you understood in ways only a seven-year old could.

You know, I’ve always believed there comes a moment in any relationship when you find out all you need to know about someone. People will show you who they are without a word. That’s what happened here, Matthew. When people found out you were sick, they responded. People you know and some you’ve never met. They responded with prayers, and food and gifts for you and your sister. They didn’t ask if there was anything they could do, they just did what they felt needed to be done and made this difficult time more bearable. They called and checked in, letting us know they were still praying, asking how you were doing. So many people took time out of their lives to let us know they cared about you. We will never forget their kindnesses or their concern for you and our family. You can’t repay those gifts of love, you just count them as blessings and file them away in your heart.

When expressing our thanks, how can we possibly forget the amazing doctors and nurses at Memorial Sloane Kettering in New York. They deal with children who face uncertain futures every day.  Quite honestly, I don’t know how they do it but I thank God there are people like that in this world and that they were part of your life when you needed them most.

It’s safe to say that we’ve all been changed by this. None of us will ever be who we were before. How can we? We’ve seen and experienced too much. We’ve become vulnerable and more cautious about tomorrow. It’s hard to explain, just as it’s hard for you to put into words how this experience has changed you. But it has. I can see it. You see things differently and you’re more vocal about expressing what you see. You never had much of a filter but you have less of one now. In some ways you’re much more mature, not in a boring kind of way, but in a way someone who knows you has to see to understand. I think, in your own way, you see life differently. But then you’ve seen and experienced things many adults never have. You’ve grown up quicker than most seven-year olds and you’ve become even more sensitive to the feelings of others.  Thankfully you’re still inappropriate, which I appreciate and you think I’m the same way, which you appreciate. So it’s a mutual admiration society of two in that respect. We know it makes people around us crazy but that’s part of the fun, right? So let’s agree never to change in that respect, regardless of how old we get.

But you’re still you. Your cousin Jake reminded us of that. He was coming to visit you one day during your treatments  but hadn’t seen you since you began losing you hair and decided to have it buzzed. Your aunt prepared him before they walked in, telling him you would look differently and may not be as active as he remembers you being just a couple of weeks earlier. Your cousin listened to what his mom had to say and then asked the only question that meant anything to him. “But he’s still Matthew, right?”

Yes, Jake, he’s still Matthew.

God Bless you, Buddy.

 

Anniversary Re-Blog (Without A Voice)

I often wondered what it must feel like to find yourself in a situation and not have a voice in what happens to you; to have lost all control of your life. So i tried to put myself into that situation, complete with the helplessness and anger that are part of process of dying. Its what we all think about in our darkest moments, but are afraid to speak.

Without A Voice

I’m laying in a hospital room looking like a poster child for health care and beginning to think this process of dying is nothing more than an exaggerated form of free verse. My mind’s in the middle of short little thoughts strung together to form a moment that has no possibility of being remembered without dramatic embellishment. If nothing else, death is drama at its very best, one that allows each of us the opportunity to star in our own limited one-act play. Fortunately, or unfortunately, some of us close after one night while others are forced to tolerate longer engagements of various lengths. Still, the process is unique in terms of how it relates to what remains of our lives.

During the last few days I tried to remember when I stopped being the person I’ve been my entire life. Terminal illness has a way of robbing you of your identity and how you seem to be defined by others. Rick no longer has a house in the suburbs, he has cancer. Rick doesn’t have children, a wife or a job, he has cancer. Seen Rick lately? No, he has cancer. It seems to me I was terminal before I was terminal.

I wonder how and when that happened? There has to be some rule or understanding among non-terminal people who decide when The Terminals will drop out of society; some sort of definition or timeframe they embrace. We love definitions, don’t we? We actually place labels on death depending on a person’s age. If you die under the age of twenty it’s a tragedy. If you die between twenty and thirty, it’s sad. Between thirty and fifty, a sin. Between fifty and seventy, you’re still relatively young. After seventy we quietly move from definition to expression. If you’re between seventy and eighty we raise our eyebrows and tilt our heads as if it’s no real surprise. Beyond eighty we just shrug our shoulders. After all, how much life can one person expect? You suddenly get the feeling you’ve finished dinner a while ago and are taking up space at the table; as if seats at this buffet are at a premium.

Me? I’m in the raised eyebrow/tilted head category. People who work here don’t know whether to feel sorry for me or pat me on the head and ask me if I’ve had fun in Disney World. I have a trach that prevents me from speaking but everyone walks around this room and acts as if I’ve lost my ability to hear, think, reason and feel. Seems like creative math at its worst; you minus sound equals nothing.

There’s a certain mosaic pattern to this eventuality that we don’t seem to appreciate until we’re facing death. Then time suddenly feels like money on a bad night in Vegas. For me it begins and ends with the eyes. I’ve taken and stored mental snapshots in my mind since I reluctantly checked into this paradise a few weeks ago and have watched the eyes around me gradually become as sad as I feel and as dead as I’ll be in a short time.

The suit and scope guys don’t really see me anymore. I’m not sure they ever did. At a certain age faces become blurred to the med dispensers at the side of the bed reading the current box score of my fading life. To them, I’ve become a billable commodity whose space will soon be filled with another, hopefully younger, individual, willing to play another round of poke and probe. Am I sounding cynical yet? Good. I was afraid I was being a bit too subtle.

Of course, no one really wants to hear or speak about this morbid topic unless they have a stake in the outcome. Who can blame them? Why would anyone want to sit around and dissect pain and its eventual outcome? After all, when you’re a Terminal the outcome is like bad literature; predictable and without life. Revisions are unnecessary. So why stick around for the reviews when you know the critics have already made up their mind?

Sometimes, it’s just time.

Laughter And Medicine

A famous comedian once said, “Tragedy plus time equals comedy.” For the most part, I believe that’s true, though there are several tragedies I can think of that no amount of time can render funny. Still, we sometimes find ways to laugh at things or situations we never thought possible.

Since I was a child, I’ve believed it’s important to find humor wherever you can. I learned that from my mother. She didn’t have much of a filter. If she thought something was funny it usually came out of her mouth. She loved to tell stories and, by the number of people around her at parties, it was obvious people loved to hear them. Sometimes you shook your head and laughed, sometimes you just laughed. But you always walked away with a smile on your face.

My mother would have loved my grandson Matthew because they’re cut from the same cloth, as is Matthew’s mother, my oldest daughter. You think it, you say it, you deal with the reactions. So you see, the apple really doesn’t fall too far from the tree. Must be a genetic thing.

For the first few weeks after we found out about Matthew’s lymphoma, we didn’t laugh very much as a family, and if we did we felt guilty. We put on happy faces in front of him but that was all smoke and mirrors. Reality was still sinking in and we were still trying to get our arms around this thing, do what we had to do and understand how to do it. Lots of information to digest, decisions to make and things to do.

But something happened along the way.  Laughter crept in. Slowly at first, and then a little more. The thing about laughter is that it makes you feel normal again, at a time when nothing felt close to normal. It heals in ways medicine can’t and it becomes infectious. The more you allow laughter into your life, the more life you seem to have. It’s part of the process.

Last week Matthew was in the hospital for four days. Following his treatments, his white blood cell count dropped to nothing, he developed sores in his mouth, an infection that he needed antibiotics for and a transfusion. These are all side effects to the chemo. For a few days he looked terrible. His cheeks were swollen from the sores, he couldn’t eat or get out of bed, his hair was falling out quickly and he barely smiled. But as his white blood cell count began to rise, his sores began improving, the transfusion kicked in and his smile slowly came back.

On his last day in the hospital before they released him, we were sitting around talking to him and realized he looked like Marlon Brando in The Godfather, with his puffy cheeks. So we took out our cell phones, and asked him to repeat a few lines from the movie. As you might expect, he was only too happy to oblige. Still a bit out of it, with some sores in his mouth and his cheeks puffed up, we video taped him say, “I’m gonna make him an offer he can’t refuse.” He not only repeated the line, he did it with attitude. Of course we didn’t stop there. We recorded other lines, including the famous, “Leave the gun, take the cannoli’s.” He laughed as he watched them back and we laughed as we watched him watch it. I still view those videos every day and laugh out loud when I do.

This past week, his hair was falling out quickly so he wanted to get it buzzed because it was annoying him. Of course we told him girls think guys with bald heads are sexy and I think that intrigued him, even though he shook his head and covered his eyes at that statement. We did a face time with him a day or two later and told him the haircut looked good. Then I asked him if they gave him a free comb with the cut, in case he needed to fix his hair when he went out. He laughed and shook his head.

And we laughed with him.

 

 

 

The Ninth Floor

There aren’t many places you can walk into that will cripple your spirit and forever rearrange what you think is important in life. There aren’t many faces you can look at, and know instantly, you will see them when you close your eyes at night. A year from now, five years from now, you’ll wonder how they are. Where they are.

If they are.

The ninth floor of Memorial Sloan Kettering Cancer Center will do that to you.  It is the pediatric floor of the hospital and is filled with children who have cancer and young parents who are wondering how and why they got here. Year old babies being held by moms pushing IV poles. Toddlers who haven’t been walking that long are now walking attached to a drip line. Teenagers who should be enjoying some of the best years of their lives are instead confined to a chair for six or seven hours a day.

One of the children who was there that day was my seven-year old Grandson, Matthew, who was diagnosed  with a rare and aggressive form of Lymphoma a few weeks ago. The positive news is that the doctors believe it is curable and this will only be a page in his life. But curable doesn’t mean that he hasn’t had surgery, endless tests, spinal taps, or bone marrow pulled. It doesn’t mean he’s immune from having to take endless amounts of pills or five-hour round trip car rides into the city or fourteen hour days 4-5 days a week during chemo weeks. It doesn’t mean he’s not confused or angry at times, especially when he looked and acted like a normal seven-year old boy whose energy level was off the chart. It doesn’t mean he won’t have to endure several rounds of chemo, risk of infection, possible hospital stays or transfusions. It doesn’t mean he won’t have side effects or that his self-esteem will not suffer. And we haven’t even started to address what this has done to his parents and our family.

When you find out an adult has cancer people generally ask questions. When you tell someone a child has cancer, no one knows what to say. They stare at you and shake their heads as if they misunderstood. They tell you it must be some sort of mistake.

Except it isn’t.

The ninth floor at MSK is a violation of everything you might believe in or hold holy. And yet it is a place of laughter and smiles, hope and healing. It’s where courage lives, battles are won and heroes are born every day. The kids here may have visible scars and be without hair but their strength, and that of their parents, is palpable. The nurses are a special breed of people, the doctors are respectful, patient and honest.

As difficult as this is for Matthew and our family, we feel blessed that his cancer is curable. As my younger daughter said, this is the best possible news in the worst possible situation.

I’ve known a lot of people in my life but there have only been two or three that have made me laugh out loud every time I spoke with them. Matthew is one of those people and the things he has gone through recently has not changed that at all. He has an unfiltered and irreverent sense of humor that can make you shake your head or laugh out loud and I’ll take those chances every day of the week.

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A few weeks ago we were sitting on the beach late on a weekday afternoon watching the waves and talking about life. Cancer was not part of his future. These days we’re sitting in a treatment room on the ninth floor of Sloan Kettering as the meds alter his little body. Life changes pretty quickly. What was important a  few days ago now seems trivial. What was once upsetting now seems petty.

People have asked if there is anything they can do for us. We always answer the same way.

Pray. Pray for Matthew and for all the ninth floors everywhere.

P.S. Last night after he got home from a long day of treatment at the hospital, Matthew and I were sitting on the sofa watching one of the America’s Funniest Home Video shows I DVR’d for him. (Are you surprised he loves that show?) He was sitting curled up next to me with his head laying against my chest laughing. As I began fast forwarding through a commercial he looked up at me and said very seriously, “You know, Grandpa, you’re the nicest old man I know.”

It was one of the nicest things anyone ever said to me because I knew exactly what he he was telling me and where his heart was. That’s who he is and that’s why I love him so much.

Thank you for listening.

What The Heart Knows

One of my daughters sent this to me the other day. I thought I’d share it with you.

imagesIt was a busy morning, about 8:30 when an elderly gentleman arrived at the hospital to have stitches removed from his thumb. He said he was in a hurry as he had an appointment at 9:00am. The nurse took his vital signs and had him take a seat, knowing it would be over an hour before someone would be able to see him. I saw him looking at his watch and decided, since I was not busy with another patient, I would evaluate his wound. On exam, it was well healed, so I spoke with one of the doctors, got the needed supplies to remove his sutures and redress the wound. While taking care of him, I asked if he had another appointment that morning, as he was in a hurry. The gentlemen told me no, that he needed to go to the nursing home to eat breakfast with his wife. I inquired as to her health. He told me that she had been there for a while and that she was suffering from Alzheimer’s Disease. As we talked, I asked him if she would be upset if he was a bit late. He replied that she no longer knew who she was; that she had not recognized him in five years now. I was surprised and asked him, ‘and you still go every morning, even though she doesn’t know who you are’?
He smiled as he patted my hand and said, ‘She doesn’t know me, but I still know who she is.’