Greg was born with MHE. ( Multiple Hereditary Exostoses )It wasn't much of a problem, though, he did have surgery to remove a "Calcium Deposit" from behind his knee when he was seven. (Note:Benign cartilage tumors, are NOT calcium deposits.)
At age 34 Greg noticed that one of two "deposits" on his rib cage (which were always large) started to get sensitive and seemed to be growing. Since it had always seemed large, he didn’t pay much attention to it, or, perhaps "just blocked it out of his mind", as he says. He believed that once you reach adulthood, that MHE tumors do not grow anymore and you don't need any surgery. It wasn't long before he learned otherwise.
It continued to grow and be sensitive. The aching toothache-like pain in his ribcage was most noticeable when he was out working in the yard. He had just bought a new home and had a lot of ideas about he wanted to create before summer ended. At first he thought the new growth was from too much calcium in his diet. That was an old fashioned myth about the multiple bone tumors held in his family, about how these growths were supposed to have developed. As an adult, Greg admits, he really hadn’t bothered to learn anything new about MHE, But he finally got curious enough because of these new symptoms. So he has searched the web. But, the more he read, the more he says he felt like he was a hypochondriac, and it was easier to just not think about it.
By autumn, Greg realized he still had the annoying symptoms, and couldn’t just explain it away and blame it on his yardwork. He had finished all the gardening he could do for the season. So, he listened to his body, and made the decision to see a doctor. He wasn’t sure how to go about finding one. So he just looked in the yellow pages and picked one listed under "Orthopedic Surgeon”. Fortunately, he found a qualified doctor that knew exactly what he was doing.
By Thanksgiving time, Greg had been through a gamut of tests: xrays, scans, and MRI's. He had thought it would be a simple thing to take care of. Just another one of those exostoses to be removed, like when he was a kid. So, he was very surprised when the doctor explained that he most definitely suspected Chondrosarcoma. The tumor on the front of the ribcage pointed outward, and that was the part that Greg was aware of, but, it was just the tip of the iceberg. That was only one tenth the size of what was embedded on the underside of the ribcage, and pushing against his spleen, and heart. It was imperative that surgery be performed as soon as possible. So, just two weeks before Christmas, Greg had complicated but expert surgery which removed a total of five ribs and the large tumor attached to them. This created a large gaping hole which the surgeon covered by taking a piece of Greg’s pelvis muscle and pulling it upward to protect his inner organs, and held it all together with surgical mesh.
Amazingly, Greg was able to return home in time to celebrate Christmas. One would think that with all that surgical work done on his body, Greg would have a lot of pain and immobility. But, Greg was fortunate that he could manage it all with strong doses of anti-inflammatories. He had bad reactions to narcotics at the hospital, so "non-narcotic" options was the best option for him. As far as Greg was concerned, the biggest pain for him to bear, was the removal of the innumberable staples that held his very large incisions together. What a way to bring in the New Year!
Some folks would probably like the idea of curling up with a good book to ride out the winter months, after such a surgery, take advantage of the time off from work allowed to him. But Greg was more interested in his computer and getting back to work with it. At his age, he was in the best of health otherwise, and able to regain most of his range of motion. So, he worked hard to convince his doctor that he was well enough to go back to work sooner than originally predicted. It wasn’t like he had any hard physical labor to do. That would come in the summer, when he planned out further landscaping of his yard.
The doctor, in his wisdom, told Greg to hold off a little while longer. After all, one of his incisions hadn't healed as neatly as the others. And part of the ribcage reconstruction was still very swollen and puffed out. Greg had to admit that many of his clothes didn’t fit right over that area of his chest. The doctor said the muscle would eventually thin down, and Greg could wear one of those blue neoprene belts over the area. Admittedly, Greg was not too happy to wear such a device, and it took a little time to get used to it. It was a little weird for him on the first day, but he knew he would have to wear it if he wanted to return to work, and feel comfortable with the new bulge not popping out on his chest.
Greg was sorry later, that he had returned to work so early. He had arranged ahead of time with his employer to go it slow and take it easy, but since he didn’t have any obvious outward signs of disability he was soon overloaded with work. Though working at a computer all day may not seem difficult, anyone who has had major surgery such as what Greg experienced needs more time to be able to be productive and still have the ability to give the body a chance to heal.
“Don’t try to convince yourself that you are tough and you can take it,” Greg advises others in this same situation. “Even if you are bored with sitting around doing nothing, returning to work before your body is ready makes it a lot tougher than you ever thought it would be. The word stress doesn’t even cover it!”
But, not one to back down, or turn around and ask for more time off to recover, Greg stuck it through. So, back to working hard, he felt annoyed at himself that he couldn’t lift and carry his notebook computer on his shoulder. He got a few stares from others as he toted it around on a wheeled laptop carrier.
“I kept things low-key at work. I didn’t tell anyone what my diagnosis was and only a few knew I had surgery, but no one knew how serious it was. Maybe I shouldn’t have kept it a secret.” Greg says.
It was a relief to get his first set of post-surgical scans done, and he returned every three months for the first year, then bi-annually, now his scans are done annually, and he continues to be free of any signs of cancer. The doctor also includes tests every two years just to follow up on how his MHE tumors are doing, too.
“I learned the hard way,” Greg says, “It is not over when you reach adulthood. People with MHE should be checked regularly. If I had known earlier, I might not have had such a large tumor or surgery. Woulda', Shoulda', Coulda'..... I'm just grateful that I've come through this Chondrosarcoma experience. I will never leave it behind me, but let it be a lesson to take better care of myself."
We can make a difference, one person at a time.
How do you tell your child about cancer?
What do you tell your child when the cancer is there own?
Do you tell him everything will be okay when you know it is not?
How do you tell him why the surgery wasn't enough?
What do you say when it is time to have chemotherapy?
How do you explain what it all means when you don't even know yourself?
How does it feel when your own child knows more about his own Rhabdosarcoma, about his own chemo port, about his own blood counts than you do?
How do you keep your emotions under control when you see your child suffering?
Who can you go to when you realize you have no control over the situation?
How do you deal with the fact that other cancers get the funding needed for research?
I once was an extra in the film, Eight Men Out
I was happy as a clam to be an extra in the movie. Part of it was filmed in Indianapolis, at Bush Stadium. If you pay attention, you can see me
When I was a kid, had I known about my cousin, I wouldn't have had to go through the trouble I did as a kid just to be allowed to play baseball. I lived directly across the street from a circular park that the boys claimed as the best location for their baseball games. As time went by, a diamond formed just from their use of it. The city didn't make baseball diamonds in their parks in those days. Today, a girl can be involved in any sports she wants. Back then, I had to finagle my way to play third catcher. Those boys sure were bad catchers. I soon moved up to second catcher, then earned the privilege of being right behind the batter. Once there, I got to bat, run the bases, and play first base. I LOVED baseball!
Ironically, at the same time I was getting my recognition on the Laughlin Drive Neighborhood Team, (1959) Zack was inducted into the Baseball Hall of Fame! He was included in the books, by Lawrence Ritter, " The Glory of their Times
So, when I first learned about Dustin, I could really relate, not only because he and I have Sarcoma in common, but because he LOVES baseball!
So it is with great interest that I have been following his story in the his carepages blog and in the news. This is a kid with spirit. Well, I should say, this is a young man with spirit!
Dustin is 22, the same age as me when first diagnosed with Chondrosarcoma. Dustin was diagnosed in March of this year with stage 4 Osteosarcoma. He immediately began chemotherapy treatment at University of Iowa Hospital, a good place to be if you have a bone cancer. Chemo, of course, has it's side effects, but Justin took it as it came, and stood up to it, like the quote in his Carepage, from a song called "Stand" by Rascal Flatts:
'Cause when push comes to shove,
you taste what you're made of
You might bend 'til you break,
'cause its all you can take.
On your knees you look up,
decide you've had enough.
You get mad,
you get strong,
wipe your hands,
shake it off...
then you stand...
then you stand!
I think the song says a lot about Dustin. He went through weeks and weeks and weeks of Chemo with some pretty nasty side effects. He only just finished last week. And yet during all this he stood up and prepared himself for participating for something else in his life that was more important than letting the chemo keep him down. His family and friends stood together with him throughout all this, too.
By the end of May, the chemo was interrupted, and surgery was performed on Dustin's shoulder/humerus. He had limb salvage surgery, and removal of involved lymph nodes near his neck and under arm. He had only a month to recover from the surgery, then chemo was started again. It really surprised me to learn that Dustin was able to sing while he had chemo sores in his mouth. I get mouth sores from Oral Lichen Planus and singing is not possible. I know chemo sores are way worse. Dustin sang at his school principal's retirement. This is one tough guy! So tough, that Dustin even entered a singing contest.
The Chicago Cubs, (Dustin LOVES the Cubs!) had a contest to sing, "Take Me Out to the Ballgame" during the Ultimate 7th Inning Stretch Competition. Not only did Dustin perform for the competition, but continued to go back for more auditions as he continued to make it as a finalist. All this, while recovering from the major surgery on his shoulder, arm, and lymph nodes, plus his continuing chemotherapy. And sadly, his Grandpa, who taught him everything there was to know about baseball, died in late July. On top of this, the news people got wind of his story and overnight he was being interviewed by TV and Newspaper Reporters.
How in the world did he do this? How could he repeatedly perform his singing? How could he continually talk to interviewers with those sores in his mouth, with anemia and low white blood cells and dehydration, and breathlessness and exhaustion? When did he rest? How could he stand it?
If you take a look at his audition video, you will see that not only did his stand up and sing, but he's definitely got spirit
What a great smile! What a good-lookin' guy. What a voice!
So, today I learned from the news that Dustin won the competition. I cried for him with joy. I cried for his mother, Rose, and sister, Amy, and his friends who have stood by him through all this. I am so happy and excited for him!
They didn't even have time to update his Carepage with the news. Yesterday, just seven days after that last chemo treatment he performed in Wrigley field during the 7th inning stretch. I love it, that the last comment in one of the news article says:
When the stretch came, "he stood up in front of 41,000 people and just nailed it!"
This is a link to the KWWL story on Dustin where they have a video of his performance. I don't know how long they will have it, so take a look while you have a chance.
A young woman in Scotland, Zoe's her name, died ten days ago. I found the article about her online in the Edinburgh Evening News. She was supposed to participate in a charity fashion show to raise money for cancer. Her mother stood in her place. I have conflicting emotions about that. How could she? Isn't that a little macabre, and unfeeling? On the other hand, how could she not? I admire her ability to stand in her daughter's place when she must be crumbling inside! Like I said, conflicting emotions. I can't imagine myself being able to do that. The show must go on? But, who am I to judge someone else's motivation? There's way too much of that going around. There seems to be no instruction manual that describes how to function in a situation like that. Perhaps Hospice is the closest thing to it with their bereavement counseling.
I have a feed on my desktop that brings me links to articles with the words sarcoma or bone cancer in them. Nearly every day there's something new. Some of the articles are about pharmaceutical companies making announcements for their stockholders of a new drug that might be the next cure. I have seen these articles come and go. They are written from a very positive perspective. I am sure it helps them to get more investors. They are not misrepresenting themselves. They have already put years of money into researching those drugs.
There is a lot of controversy among various cancer support groups, and individuals, about pharmaceutical companies.
"They're just out to make money, to take advantage of cancer patients."
"They're working against great odds to create a new effective drug just as fast as they can."
A range of beliefs about them exists beyond both ends of the above spectrum. Imagine everything between pharmaceutical angels with the next gift for humanity to being in league with the devil permitting people to die unaided.
I used to feel quite neutral about them, then as I learned more about sarcomas, and how little funding there is for rare diseases, I felt resentful. Then, when I learned of a drug that actually could cure one kind of sarcoma, but not others, and the company decided to not go into production, I was vehemently angry. Then, as time went by, and I learned more about the intricacies of such endeavors. I grew more patient, not complacent, but at least comprehending. There's more to it that meets the eye, certainly more than one entity (company, government body) at the other end holding the reins.
What does this have to do with a girl in Scotland who died of soft tissue sarcoma? Probably little, maybe a lot. I am free associating here.
When I read these articles of brave young people courageously facing their particular sarcoma, often Ewing's, when I read about father's or mother's selflessly sacrificing their heart and soul to those children; or adults who get involved in fundraising events even while they are having surgeries or chemo, or grieving, I have such a mixture of emotions. It never fails to amaze me how these stories are never something about which I can feel neutral.
I do wish, though, that these reporters would say in their articles what kind of cancer a person has, instead of just "hip cancer", for example. This is so misleading and doesn't give due respect to the patient or the disease. OK, well, maybe I am being judgmental again. But, the public, the readers of those articles, should they remain in the dark about cancer? Should it be some mysterious, threatening thing that has no name, about which we should hide the facts? When one reads an upbeat article about a person who does really well, who survives many years, who "beat cancer", doesn't that give a false impression that it is easy to beat, that cancer is curable? Maybe that person has an easy to beat cancer, but without the actual name of the disease specified, doesn't that soften the impact? Doesn't that mislead the reader into complacency and lead them to believe that all will be well when it is their turn?
Conversely, when one reads an article where someone had a very terrible "battle with cancer", a beast without a name, doesn't that lead the readers to fear the great monster that will kill us all? I have seen too many people uneducated about cancer, who live in ignorance of their disease not bothering to arm themselves with the weapons to fight the cancer dragon, because of their positive-minded faith (denial?) in what they understand is the cure rate. I have seen too many totally frozen in fear because of the overwhelming mistaken understanding that there is no hope for them. Why bother to apply themselves to learning the facts? Reporters and newspaper editors, I hope will become more knowledgeable themselves and name the kinds of cancers about which they report, while they are creating these types of human interest stories.
Over the last six years, (since I started the Chondrosarcoma Support Group) I have read scientific articles on various aspects of sarcoma research. At one point, a cancer scientist was a member of my group. I could call him up any time, tell him about the article, and ask him what it meant. I learned a lot from Peng. He's not here anymore. (I miss him so much!)
But, now I sometimes call the author of a particular article and ask questions. I call the pharmaceutical company representatives, too. I ask them about whatever is the latest sarcoma drug about which I have read. I have never spoken with one who hasn't had a shred of humanity, who doesn't take pride in the work they do, whose voice doesn't waver just a tiny bit when I am tell them about why I called them, about the chondrosarcoma patients who need a new drug...
Need a New Drug? Wasn't there a song?
Yes, Here it is! I found it.
When there is a trial being planned for one of those new drugs, and I am asking how 
soon they expect it to begin, and they want to know why and I tell them because I have a group member who is counting their days, I can hear the regret in their voice when they tell me the date will not be any time soon.
So, I extrapolate that if they read about a Zoe, or a Miles, or anyone else, they cannot be entirely neutral either. So, I am realizing that Researchers are human, and pharmaceutical companies are made up of humans, and they are committed to their work. Now, that leaves me with wondering about the FDA and what are the workings behind getting a new cancer drug approved.
Just some thoughts...
As moderator for the Chondrosarcoma Support Group and member of other Sarcoma Groups, I have an increased experience with the methods of coping that occurs with diagnosis and survival, or death. I think there is a place in all of us where grief resides. It sleeps there until it is nudged and suddenly it comes alive and fills us. It can be intense, and it is meant to be. Though, some of us have learn how to not let it be the dominating factor, so that we may be going about our lives holding it beneath our consciousness. Yet, it quivers like a nervous puppy, letting us know it is there no matter how we try to ignore it.
Really, I think grief sleeps until we need it, and yes, we need it. Without it we would not be fully human. Yet, we seem to be afraid of it when we work so hard to squelch it, put ourselves into denial so we don't feel it. Yet, when something occurs so overwhelming, it spills over us like
I have three children, all, grown up adults. Among them, I have 8 grandchildren, some are adults. I have 3 great-grandchildren, Alexander is the youngest. Among them all, life has visited upon them occurrences of grief. One might say that a three year old could not possibly truly experience grief. But, when the family husky had accidental opportunity for nose-to-nose acquaintance with the family bunny, nature took it's course before human intervention could take place. Alex and his four year old step-sister were inconsolable. As adults, our feelings about the rabbit were not attached, therefore grief did not awaken. But, observing the children's grief shook us to our core. Yet, as adults grief instructs us to take action to console those without consolation.
Perhaps in some other families where grief is stifled, not an acceptable emotion to be expressed, an adult would admonish the children. "It's only an animal! Stop that crying!" and they would learn right from the get go, it is not acceptable to share grief, or to have consolation. So, they learn to stifle it, as their parents have learned before them. It is my understanding, stifling our feelings can increase the intensity of the stress that it takes to keep denial in charge. This is not to say that we give our feelings free rein to overtake us. I believe that feelings wax and wane, and giving them fair opportunity to be experienced, allows for them to balanced.
I think Denial is a formidable enemy, especially when dealing with cancer. I see it doing it's dirty work in the various Sarcoma communities with which I am associated. Yes, it is true that denial may have an appropriate place in our lives as a coping mechanism, but when it takes over and controls everything we do to the point of not being able to work with our circumstances that is when it prevents us from moving forward and into the future, no matter what it brings. Denial freezes us and prevents our full presence in the moments of our lives meant to be cherished, even if grief is the central emotion being felt.
With little Alex and his sister, we could do nothing except permit them to be with their grief and to grieve with them and for them. (Empathy, I believe, is a healthy emotion, too.) Grief, given it's right to be, moves forward, and gives us the opportunity to take action to assuage it. It burns itself out periodically, so that we can function, so that we can make decisions about life, to respond to the next thing life brings us, to get out of the rain, if it rains, to go home when night falls, to make the effort to bury our dead. I think of that as healthy grief.
Comforting the children involved also, planning out and acting upon respecting the body of the bunny, burying it, and having a ceremony to put it to rest and help the children to have some closure. Of course, they were quite angry with Wolfie.
This too is a common reaction to the death of a loved one... Anger. And yes, it took a while, but they learned to let go of the anger, and forgive Wolfie for his part in the death, even though they still have episodes of grief popping up for them.
This is a minimal example of what we go through when we experience death and it's finality with those we love. Even in my position of having a support group, and being a member of other support groups for sarcoma patients, it is still not easy to accept the deaths of members. I am aware of the denial of the prospect of death, aware of the lack of preparation, aware of the shock and devastating results upon the family member. These situations affect me, too. I have a personal philosophy that gets me through it for my "logical mind" to grasp. But, this is not enough for my deeper emotions. So, I grieve the death and sometimes am forced to move on very quickly, as the needs of a newly diagnosed member take precedence. Unlike my great-grandchildren I do not have the luxury for closure by attending a ceremony to put to rest the people I care about.
I have been asked why I include in my blog, the stories of those who have died. Why don't I just write about those who have good results, who get to live out their lives without cancer, so that people can have hope. I can only say that death was my companion during the years that I was dealing with Chondrosarcoma, and formed my opinions about it now. Death is a reality of life, too often feared, and sometimes inevitable when there is a diagnosis with sarcoma, or most any cancer. To me, denying the possibility, increases a greater fear of death, and interferes with emotional healing and peace of mind, whether one dies or not.
As a Viet Nam Vet, for one fleeting second his mind flashed-back on him, and he wondered if he had been shot. He was just walking along like any other day, and experience a cracking sensation and pain in his upper leg that knocked him right down. Not really knowing what had actually happened, but realizing it might be serious, his daughter, Debbie, took him to the Emergency Room. Ken couldn't talk her out of it. And in a way he was glad his daughter was such a take charge woman. He really didn't want to wait it out as much as he protested otherwise. He knew something wasn't right.
X-rays showed Ken had a fractured Femur, but the ER doctors were hesitant in telling him about the tumor that had caused his fracture without calling in an Orthopedic Specialist. So Ken had a long wait. By the time the Specialist had come in, Ken and his daughter had figured out it was more serious, but it never occurred to them it was cancer. They had never heard of Sarcoma, let alone De-differentiated Chondrosarcoma.
The fracture had broken the tumor open, so before there was to be any surgery, chemo was decided on first. When a chondrosarcoma tumor is no longer in one piece it has a tendency to spill itself into adjacent tissue. The hope of Ken's doctors was that the chemo might cause some containment.
Debbie, in the meantime, had spent time searching for information and read, over and over again that Chondrosarcoma does not respond to chemo. She couldn't bring herself to question the doctors, and trying to discuss it with her Dad was hard to do. He felt it important to "let the doctors do their job, and stay out of their way."
Unfortunately, the idea didn't work as hoped. Within the three months time of the chemo treatment, Ken's tumor rapidly grew to three times the original size noted at diagnosis.
There was only one option at this point, amputation of Ken's leg. Though this was a horrifying prospect to Ken's family, he faced the treatment option with a solid resolve.
"If my buddies back in Nam could have their legs shot off and manage... well, so can I," he said. "They'll just be a little bit more experienced at it. That's all!"
Ken's family had a much harder time adjusting to the circumstances than Ken did. Sometimes it is harder to be the loved one of a cancer patient than it is to be the patient. Ken refused to discuss the fears that others brought up to them. Thinking 
positive and tough was Ken's way. It had gotten him through to this point in his life and his family knew that he needed their support, so they put aside their concerns for his sake.
Ken was able to get through the surgery and rehabilitation process, as many of his buddies dropped by or called regularly. He took up working with weights to strengthen the rest of his body and actually felt healthier than in years, except for the pain. He found it annoying to take pain drugs as they made him feel worse than drunk and dopey, and so he would do without them until he just couldn't stand the pain anymore. He had a lot of phantom pain which finally got help with a drug that was not so mind-bending as a narcotic.
"Denying the pain is not as easy as denying fear" Debbie says. "Once the doctor explained to him the concept of the cycle of pain, it helped Dad to get a handle on it. He still didn't like the side effects of the drugs, but after a while his body adjusted. He even got himself into better shape by working out with weights every day.
Then, about a year out of recovery, Ken got a new pain in his back. He thought he had sprained it somehow. After all, being an amputee, one has to learn how to use the body differently. Other parts of the body have to take over for the missing part. It would be easy to have a muscle sprain.
But, the pain didn't go away. He was readmitted to the hospital after he began having numbness from the waist down. Scans discovered multiple tumors on his spine. This time, Ken declined to have chemo and chose to live out his life as best he could with whatever time he had left.
"My only regret is that I never questioned anything, or even really understood how serious this was. I thought it was supposed to be an easy cancer to have." Ken said. But, I am glad I am living out my time, without chemo. The pain is controllable, the nausea was not."
Debbie misses her father terribly, as do other members of the family. Ken was 53, and a first time grandpa. She says she wants others to know, "learn as much as you can, ask questions, and get answers. We never understood why this was so aggressive. And try to talk openly among your family about what you are going through, if you can."
