That first day started quite early for me. It would have been 3 o'clock in the morning, California time. What little sleep I got through the jet lag, was interrupted by the awesome light show of the night lightning. Not complaining, you understand. I LOVE lightning!
We all met in a large room of the hotel where all the bicycles were awaiting our presence. I looked around me as everyone got ready, admiring all the slick biking attire, and those really great helmets that always remind me of some part of a Klingon costume in a Star Trek episode. It felt very surreal to this woman who hasn't been on a bike since 1975. There just isn't any butt bone to keep me on one of those banana seats no matter how much padding I have grown!
After everyone was introduced to their bikes, and we all went outside for a couple of group photos, the rain began in earnest! This resulted in a few deciding not to particpate.
Blanca, from Mexico City, and her young son, Ricky, rode in the van with me while we passed by the cyclists and checked on their progress. The longer we traveled the more distressed our nine year old passenger became. He came all the way to the US to ride his bike, after all. And what was this? The very first day, he is banished to the van! Well, mother knows best! That is for sure. It has not been that long since Ricky finished Chemo. So van duty was the order of the day. He was unconsolable. Finally, Chris, our Sojourn driver, was able to take a moment, pull off the road, and communicate man to man with Ricky. Even though they didn't speak the same language, I saw Ricky respond to the guy to guy thing and pull himself together. His mother and I had no luck, so it was heartening to see the positive effect that Chris had on him, plus the package of skittles.
As unhappy as Ricky was, I couldn't help but think how brave his mother and he were to come all this way to be in Vermont with us considering his Sarcoma diagnosis and all they had been through so far.
I am used to communicating with Sarcoma patients through the internet. Though I have deep feelings for my cyberfriends and family, it sure brought home to me that life can go on. The sun doesn't stop arising, the rain comes when it chooses, and life continues in whatever direction we take it, even after the diagnosis, the surgery, the treatments. And, yes, sometimes we don't get to ride our bicycles! But, another day may come when we can! And in the meantime, we can find people who care about us enough to bring us out of our funk, and make life sweet again.
I have not been very socially active for quite some time. Maybe it is a natural part of "aging", now that I am an official senior citizen, or maybe I have just been withdrawing from the "real" world as so many of the anti-internet folks would say. I have to admit that while away in Vermont, I was extremely aware of my lack of comfort of not having my fingers glued to a keyboard. But, perhaps my association with about 60 others on a day to day basis helped keep my fingers busy in other ways. Thrusting my arm upwards out a window and shouting out, "Go Team Sarcoma" to the cyclists along the route while my gallant Sojourn Tour Guide drove along the course was one way to keep me happy, while somewhere deep inside me, a little jealous girl from my past cried out, "but I want to ride a bike, too!"
I quieted that little voice with promises to let her ride the wide seated recumbant bike that sits in the Easy Racer warehouse back in Watsonville. I got to try it out a few months back. I will have to find a way to attach my right foot to the pedal so it won't fall off due to the missing muscles of my leg. But, I am going to try it again!
We can make a difference, one person at a time.
Thank you to all who have contacted me asking for more blog. I will continue it.
I have returned from the Team Sarcoma event and will be 
catching you up on all the highlights. What an incredible experience it was. I hope you will consider attending next year's event, or plan on creating your own. If so, for more information, see:
http://tinyurl.com/cdv6b
Presently I have a terrible bad cold or flu which quickly developed into bronchitis. The doctor has now placed me on antibiotics, and as soon as I am more rested and feeling better, I will be able to return to posting more sarcoma stories. In the meantime, if you would like to share your sarcoma experience, either as a patient, caregiver, medical professional, or bereaved loved one, please let me know by using the comment section or contacting me at chondrosarcoma_care at yahoo dot com
Arrived at Burlington Vermont airport at 9:45 am and sat outside the baggage area awaiting my ride. I took photos of all the lovely lilies growing in the meridian. Shortly, Bruce and Beverly Shriver drove up. I hadn't noticed them at first, as I was busy focusing. Suddenly there was Beverly. I have never met her before. We have only spoken on the phone. Knowing someone by their phone voice creates a picture in the mind. It certainly didn't match the realizty. I never would have been able to predict that the woman I saw coming toward me was the Beverly I have spoken with. Yet, there was that instant of recognition... It must be her. It was a joyous sensation.
Bruce drove and immediately we spoke of Team Sarcoma plans as we went to the hotel. It has all been a strange dream. I have a severe case of jet lag. It seemed imperative to get me to a bed and sleep. But, I had not taken my medicines which need to be with food. So, Bev and I walked down the street to get a bite to eat. She introduced me to Truess, who is from the Netherlands who walked with us. She is attending the Team Sarcoma event to ride a bicycle, and to honor her youngest son who died of Ewings Sarcoma which was located behind the fifth rib. He was treated with the standard protocol for six months and surgery. But it quickly relapsed and moved into the eye and abdomen. Now her other son has recently been diagnosed and treated with another kind of cancer. He is presently doing well.
Once back at the hotel, I met my roomate, Maribeth from Illinois. Her son, Alan, died 13 months ago of Ewings. The grief still hurts, but she is one to turn her misfortune into action and that is why she is here, to create Sarcoma Awareness and raise funding for research. Considering her own disabling medical problems, including a severely degenerated foot surgery gone wrong. It can only be a mother's love and remembrance of her son that puts her on that bike and pedal way for Team Sarcoma. Maribeth says she can hear her son cheer her on!
By this time I was "punch drunk" with jet lag and dragged myself to lie on the bed and fell into deep sleep for several hours. Maribeth came in to wake me so we could go to our first Team Sarcoma dinner with all the other participants. There was a lovely buffet in a room full of strangers. I felt so out of place. Where was I? And what am I doing here? Surrealistic.
As I entered the banquet room a stunning woman was suddenly in my path with arms outstretched. Something familiar about her, but I couldn't place it. Another of my cyber phone friends, I also have seen pictures of her. Funny how the mind plays such tricks on us, convincing we know someone's appearance due to these subtle clues. Another moment lingered as I questioned in my mind, "Who is she? How do I know her?"
Then as she hugged me, in a flash, tears stung my eyes. It' s Mary-Elizabeth! I felt quite shaken with emotion. Here was the woman who I had worried about so much in my group when things were not looking so good for her. She is looking healthy as a horse! I am so excited to see her. I so enjoy the jug.
But, the show must go on, as they say and so began to settle into our seats for dinner and a presentation. I couldn't tell at first if it was my left over jet lag, my emotional lability or that it was just plain hot and stuffy in there, but soon after the meal, I had to make a quick exit, and pull myself together.
After I had calmed down, and felt better, I sat out in the lobby where I met with Rose and her solid rock of a husband, Bill. They will soon celebrate 50 years together. Again, it is odd how we get an impression of a person that doesn't match up with reality. It was Rose who I thought would be a tall stately woman with a force field around her to rival Star Trek. Imagine my surprise and delight when I met this petite pixie woman with the ageless face, and the beautiful smile. Rose and I spoke of Sarcoma Group moderating/managing issues we had in common, while Bill sat with us in his calm, accepting presence. I felt like I had been with these old friends before.
Then, while looking for a computer to use, I met Marthen, from Denmark, a handsome young man with crystal blue eyes and blonde dread locks. He was diagnosed with a very large 17 cm by 4 cm Liposarcoma in his right medial thigh and shin area. He had radiation and major surgery to remove it seven years ago and very happily has had no further recurrence. Though damage from the surgery has left a large indented scar and complete numbness of the shin, Marthen rode bicycle in last year's Team Sarcoma event. Even though he went through all that, he says, he wasn't "paying attention" to the message behind his diagnosis. Always in his life he had been very sports oriented, participating in climbing, hiking, underwater sports, and so on, he continued to pick up and do the same after his sarcoma issues were done. Since participating in last year's event, he came to meet many others with Sarcoma diagnoses. This brought him to an awareness of his own good fortune. He realized he didn't think anything about it. He didn't think anything about the possibility of losing a limb or his life. Marthen came to a conclusion that he wanted to do something more for sarcoma. He got involved with the Danish Cancer Society Youth Group.
So many other stories to tell, but I am on a borrowed computer and now my time is up.
I'm leaving on a jet plane....
What a great old song!
Tonight is the night, and I have just a few hours before Katsumi arrives to take me to San Francisco Airport to catch my flight. I am nervous as a cat. The suitcase is sitting open on the sofa and I keep walking back and forth from room to room trying to think of what it is that I am forgetting. Oh, yeah, this. Oh yeah, that. And I toss it in.
Taking a break, I sit down next to my mess and start pulling out some of the "this and that's" and scold myself for being silly. I don't NEED that! Lighten the load!
I'm not sure of what my computer accessibility will be while away in Vermont for our Team Sarcoma event, so I will more to update the blog this coming week if I can.
But, be sure I will take a lot of pictures with my new birthday camera, and will load them up later.
My flight is overnight from SF to Washington DC, then a two hour wait before flying into Burlington tomorrow morning. I hope I can get a good night's sleep while traveling.
Keeping this a short note.
Bon Voyage!
Resilience is not something we are born with. It is what we gain from our experiences. Today is dedicated to Belinda, a very resilient woman, who was diagnosed with chondrosarcoma in the skull base in March of 2000.
She had gone to see her Ophthalmologist when the movement in her left eye had stopped. The tumor was found with a MRI.. It had wrapped about the 6th cranial nerve, grown up through and around the entire left lobe of the brain. Her doctor, not having seen a case such as hers before, informed her how rare it was. Since no one in her state did skull base surgery, she was referred to
Feeling quite alone because of the rarity of her diagnosis, she searched the internet for information and support. There was absolutely no information available to her from the places she searched. (The information highway has expanded considerably since then!) It was rare to even find an article on it. But, she did find the Chondrosarcoma Support Group and became one of the early members.
Belinda had a craniotomy. Dr. Al-Mefty was able to delicately remove most of her tumor. A small remaining piece was inoperable because of its location beside the brain stem.
After being given some time to heal, she was sent to
With such drastic trauma to her head, brain, skull, adjacent tissues, one would wonder if she has any quality of life. While most would rather not think of these things, Belinda openly shared with the group some of the symptoms she experienced after her treatments and made assurances that things do get better. Like a pioneer she led the way for the group, so that others will not be so overwhelmed by the inevitable reactions of the brain to such intrusion.
Not all Skull Base Chondrosarcoma (and Chordoma) patients experience the exact same set of symptoms. It all depends on what parts have been affected. Because of such invasive surgery there is also swelling that can cause symptoms, which will diminish after the swelling goes down. In Belinda’s situation, she did have headaches. In her own words, she says:
“I could not stand light or noise during the headaches and to even touch my head was painful (like to lay down on a pillow). My surgeon told me it could take up to 3 years for the brain to "re-route" some of its functions. As time has passed things have gotten better. I had a lot of fluid behind the ear drum, which felt very strange. I could move my head back and forth and actually hear it slush around in there! It seemed to affect my hearing at first, but that has improved now. If you are going through this, you will notice over time things slowly improving.”
A late effect that Belinda experienced began September of 2003. She started having fatigue along with a few other problems. It was a struggle to get up and go to work. Walking to and from her car was exhausting. She saw an Endocrinologist who diagnosed adrenal insufficiency (Secondary Addison’s disease). She was given steroids and thyroid medication after her results from the ACTH stimulation test came back. It seems to be pretty common for those who have had proton radiation done in close proximity to the brain stem. Over a period of time, this may stop the function of the pituitary gland.
“It can be taken care of with medicine, but you have to stay on it for life. But, hey, you CAN live without the pituitary gland. I’m just glad someone knew what to look for. Being put on thyroid and steroids made all the difference in the world in my day to day living.”
Belinda was always there to offer help to others going through the same thing. She would put worries at ease or tell how to work out the problem. She reassured others of the proton beam experience and has truly benefited others in the group as well as herself.
“I feel blessed that I can provide that information....and maybe ease some of the anxiety they have.”
She has since returned to work. She drives her car and lives a normal life. By Thanksgiving week of this year (2007) She will be a 7 year survivor!
This is a difficult dedication. It is like reaching into the sea and trying to find the pearls floating in the seaweed. Oh, I know that pearls are way further down, hiding in the oyster shells. But, this is what came out of my brain and into the keyboard. (Maybe it's the insomnia.)
The sea itself is made up of components so important for survival. Seaweed provides protection, shelter and refuge as well as a valuable source of nutrients for the abundant marine life. The various sarcoma organizations represent to me, this very same kind of environment. 
The pearls not hiding in the oyster shells symbolize the leaders of the diverse sarcoma organizations. Maybe, it is one heartbroken mother, who has set up a chat website with other parent's whose children have died. Perhaps a Sarcoma patient he wants to leave his mark on the world by sharing his blog. Maybe it is a whole family, enthusiastic to raise funding for a particular type of Sarcoma. They are the ones who organize bike rides and public awareness, and seem to make all the connections in the right places.
Then, there are the sarcomas survivors, who have created an online support group or website. And of course, the business savvy people who know how to form a great non-profit organization creating opportunities for fund-raising dinners, galas, and golf outings. They have the dreams and find a way to meet their goals.
All of these are the pearls I allegorically perceive floating among the seaweed. I dedicate this blog entry to the Pearls.
When I first began the Chondrosarcoma support group, I felt like the
Lo and behold, the first
Then I discovered ACOR's Rose Burt. Need I say? A rose pearl? I joined for a while, but my heart was already nurturing my brand new creation... the Chondrosarcoma Support Group. As more members joined, and my responsibilities increased, I had less time to read through Rose's group's emails, many of which were regarding other types of Sarcomas. It was more than I could handle. She sure had a strong shoulder and a good ear, though, because I took advantage of them often back then. At one point she encouraged me to move my group to ACOR. I thought about it, I read through the site and learned how it worked. It was the most stable, well organized, multiple self-help community I ever could have imagined. Here was ACOR doing it not only for Sarcomas, but for a ton of other conditions that had not been getting the interaction and support needed.
Rose has had her ups and downs throughout the years with multiple recurrences of Liposarcoma. Life is challenging enough to face under normal circumstance, those with Sarcoma have the added problem of feeling quite alone in their battle. Rose has been there for them, even when she might have been needing someone to be there for her. Rose is the kind of pearl that you just know has layers and layers of inner strength and character built right in underneath that soft pink exterior.
Then, another
It was quite confusing how different the treatments are for Conventional Chondrosarcoma and Mesenchymal Chondrosarcoma. Some of the members were noticing and were unnecessarily frightened by the chemo, and radiation the Mesenchymal Chondrosarcoma members were going through. Generally, they are not standard protocol for conventional Chondrosarcoma. This disparity caused some of the Mesenchymal Chondrosarcoma members to question their doctors treatment choices. I saw this dichotomy and asked Mimi if she would head her own group. She said she couldn't do it, she had no experience. Of course, she did! She had a granddaughter who gave her all the experience that put her on this track in the first place. She had the intent, the fervency to put her life on the line to research whatever she could to help her precious Carly. Now, she has grown and reached out beyond her own group, gaining more connections in the Sarcoma community than I will ever know. I don't know how she does it with 3 grandchildren in the house!!
The luster on the Mimi Pearl is slathered with pony tails, cartwheels and baby burp-up, and all the love and compassion that two grandmotherly arms can squeeze into one hug! Okay two hugs. As many hugs as you want!
Then along came Doctor Dee on her broom. She is the extraordinary Black Pearl, another kind of rare.
Her Leiomyosarcoma site knocked me off my feet. I recall perusing page by page into the wee hours of the night. Before you know it, I sent an email to ask something regarding an article posted there. She provided a flood of information. I got the fastest education from this woman! And continue to learn from her daily.
Dr. Doreen Kossove has continued dealing with her own Leiomyosarcoma recurrences, while this labor of necessity fills her life. Her site also educates others who seek to gain knowledge from her wisdom. Dee and her alter ego, “Madame Brimstone” seem to have worldwide connections. She's not afraid of anything I can think of, though some may be afraid of her.
She sticks to the business of finding answers where sarcoma is concerned. She is focused and keeps her eye on the goal, and will not be distracted with frivolity. I love this woman. I wanna be like her when I grow up! The powerful Black Pearl has a soft spot, I suspect, because when she heard I had a possible brain mets, she was right there feeding me information. My motto, "Knowledge is Power" is the epitome of the information gatherer. I know this woman is at my back! And she will give me a good kick, if I need it.
You know how they say that finding something precious is like digging through haystacks looking for a needle? Where Dr. Doreen Kossove is concerned, I found the Black Pearl.
(Illustrations by Alison Woodman)
Dave Murphy is the Illusive Pearl. His name kept coming up when I searched the web for Sarcoma, or whenever I had communications with others who knew him. "Oh, you should talk to Dave, he'll know what to do. You two would have so much in common. He works tirelessly on sarcoma issues.” Dave has been responsible for establishing the sarcoma alliance reimbursement grants for getting sarcoma expertise for sarcoma patients. “A wonderful man, with a Dave sense of humor.
His name was always popping up. There it was again, the signature on a circulated email among the various sarcoma group leaders, managers, moderators, and all those other titles we end up with. I’ve learned he is humble, calm, effective, and just quietly gets things done. He has a knack for getting people connected and Dave continually encouraged Chondrosarcoma people towards my group. How could I not begin to know his character, by his actions, his commitment, his good heart? We have met more than once, in person, and still he is a bit of the Illusive Pearl. He's the kind of guy whose got a lot of mystery behind him, and incidentally, a good common sense on how to handle a computer to it's best capacity. How he manages to handle the work he does with the Sarcoma Community and still hold down his full time job as a university Computer Networking guy, I cannot fathom. Maybe it is because the one with the Sarcoma is no longer in his life but in his heart. Piera, his wife, died of an unknown kind of sarcoma in a very short time. During her illness, the diagnosis changed from one kind of sarcoma to another, so he may not ever be entirely sure exactly what kind she had. All I know is that he is here, now, for so many who are facing what he and Piera once did. I am sure others' have put their hands into the seaweed and pulled up this precious gem of a man.
Then there is the Clear White Pearl, with that hint of the heart of gold glowing through, and the sparkle of youthful ideals and integrity that is precious to behold. This is the kind of Playful Pearl that, if it were to fall on the floor, the cats would think it a great toy, and she would roll around corners, laughing, just to see them leap after her pearlness. I consider myself very lucky to have Mary pop into my life.
Suddenly there she was, encouraging me to join her group, to participate on her Adult Bone Cancer Survivors website. So often the larger percentage of bone cancers are in children. As a young adult with a very rare Parosteal Osteosarcoma, it seemed somehow as though she just didn't belong. She wasn't a kid anymore. The groups were full of parents communicating about their sarcoma kids. She wasn't a parent, but seeing them suffering on account of their kids, made it difficult for Mary to express herself. You know... when there is a problem, some folks just live with it. But, Mary is not like that. She has a mission in life and that is to get things done. She is so capable and organized she does ten times more the concentrated computer work than I do, and she has ten times less the arm capability that I do. I think of her as springtime, with lots of ideas and plans and energy (though she would say she doesn't have energy, I bet.) And I compare myself to Autumn, getting burned out, slowing down, needing a rest. (Just don't start snowing though, I better watch what I say. I'm not ready for winter just yet. Halloween, maybe.) Mary has a gift; she created her group on her own website; she got it up and running with a very professional format. She created a lot of educational patient self-help material and the site practically runs itself. A lot of the diverse young Bone Cancer members can relate to Mary, her site, and others of like mind. I know there is a lot of “joi de vivre” in her group, as well as the typical challenges that come along with bone cancer diagnosis and treatment. I think it is because of Mary’s Heart of Gold Pearl Energy.
Then there's Bruce Shriver. To me, Bruce is like that unusual pearl which is not round. It has an interesting, convoluted rough texture and shape to it. But the luster is there, and for sure, those layers of multifaceted inner strength and purpose. I had seen his site in passing, and that's exactly what I did. I passed it, and went on with whatever I was searching for elsewhere. Then, there was his site, popping up again and again, enough times that I really was feeling NUDGED! So, I quietly read it, and continued to learn things. I cried about his daughter, Liddy Shriver, with her bicycling days behind her. I had to give that up a long time ago. But, she had no choice about it.
Survivor's guilt may be the cause of my tears. And then, to think of her Dad dedicating the rest of his life to her memory. That's something my Dad would have done. I cried some more.
I signed up for the ESUN newsletter and some time later realized I had closed out the account in which they would arrive. But, Mimi was sharing them with me, and I was working on my group many hours a day. Didn't have time nor inclination to leisurely seek outside of chondrosarcoma, dismissing anything that didn't have that word in it. I was like a horse with blinders, a stubborn mule. You know how they say, "you can lead a horse to water, but you can't make him drink"? That was me. I kept on being led to Bruce and the Liddy Shriver Sarcoma Initiative. I just didn't "get it" as Donald Trump says. Well, maybe you can't get a horse to drink, but a mule might be coerced. Just dangle that carrot and it might get a move on.
However, I would have to say that two pearls are better than one and can get a clueless zebra to do what they want. That's right, not a horse, not a mule, a zebra. If I am to compare myself to the equine, that is my symbolic totem! And this zebra found those two pearls working together fascinating! It was the collaboration of Mary and Bruce that made the opportunity for me to pull my head up from the monitor long enough to see what they were up to. Yes, you guessed it. Team Sarcoma. Bruce encouraged me to participate. I couldn't conceive of it. I was dealing with some complicated medical problems at the time (torn rotator cuff was the most painful of the three) and really I just needed to be in a cocoon mode. But, Mary went ahead and joined with Bruce and all the others she met at the Team Sarcoma Event last year in
It's kinda funny when I think of the Pearls in my life, the life I thought was so empty, the life I thought was a lone island.
I sit with my mixed metaphors and analogies. I don't feel quite so much an island anymore as part of a peninsula that spreads around a bay. Or is that an archipelago? All the other sarcoma groups and organizations that once seemed like islands to me, are now a part of that conjoined land reaching out to one another and embracing the still unknown waters. We are getting to be like a string of pearls as we come together and tying knots to hold us to one another. (Yeah, networking is what I am trying to convey.)
My biggest dream for so many years has been to have the clasp that closes the circle of pearls and creates a necklace of completion in the medical treatment of Sarcomas. That clasp is created by the Researchers, and those who fund them. I'd really like to see that dream come to fruition.
It's true. Sarcoma has no borders.
Was there an angel among us? Today's entry is dedicated to Maddison.
There is a belief in certain cultures in the world that sometimes a very special person is born whose main purpose in life is to make changes for the better and bless those who come in contact with them. Sometimes these people are called Avatars, Bodhi Satvas, Immortals, Tzadikim, or Angels. We may think of them as adults who live many decades in order to do their work, perhaps like Mother Teresa or Gandhi. Whether these very special beings exist or not, this is the story of a child who sure seems to have been one.
In June 2004, Maddison ( age 12) was diagnosed with Ewing's Sarcoma. Beginning a month later, she underwent 11 months of chemotherapy, surgery and weeks of daily radiation.
Her father died when she was six years old. During his long-term illness, (since her birth) she naturally grew into a girl with a heart filled with compassion for others. Her selflessness, even in the face of her own disturbing medical situation continued throughout her life. Perhaps, she had a mission to be fulfilled.
The Children's Wish Foundation, which grants wishes for children with life-threatening diseases, offered Maddie anything she wanted.
Did she ask for a trip to Disneyland, or a wish to meet her favorite rock star or athlete? No. This young lady had a completely altruistic wish to make. She wanted to fund a tiny impoverished community school in an African village called Enelerai in the Masai Mara region of Kenya, and to dig a well so that drinking water would be available. This plan was so successful, and so inspiring that others contributed to the point where there was an excess. So, then Maddie chose to put that money towards books, supplies and other necessities.
During her third recurrence, and treatment, which included 80 days of not being able to eat or drink due to esophageal damage, Maddie again took up making her wishes come true to help others. She set up an Ebay account selling jewelry, the income from the sales, she donated directly to Free the Children.
Maddison died at age 15.
"She was everyone's gift," Her mother said. "She had a short life, but such a life! Maybe she had to have a short, forceful life."
***
I look at the picture of the Masai jumping/dancing, and think about those times I used to be able to do such things, and maybe took it for granted. Though I do recall being exhilarated by all the athletic activities in which I was involved. I wasn't much into competition, but enjoyed the sport or dance just for the pure joy of it. I wonder if the Masai dance in remembrance of Maddie?
Today I did a trial run (walk) with my luggage. I don't have it completely packed just yet, but I wanted to see how I will manage, since no one will be traveling with me on the way to Vermont. If it becomes necessary to tote it somewhere, how will I do?
I can see it will be challenging for my shoulder more than my pelvis. I tore the rotator cuff last summer and opted to not have surgery. It took months of therapy to become less painful and reasonably functional, so I have a tendency to guard it. If I do not have other luggage to carry, I may do all right.
I am sure my neighbors, if they were watching, wondered if I have become demented. There's not much chance they already could have thought that, as I live in a senior neighborhood and many go for walks. So, that is not unusual. Walking with luggage dragging behind you is cause for raised eyebrows, though. One can usually tell when it is time to contact a neighbor's relatives. Perhaps someone is wondering how to contact mine. Well, of course, my walks are not being followed with such interest, but I guess my mind wanders into something to make it more interesting. I miss my car and the opportunity to have it take me to other places to walk. I like diversity.
I didn't get very far with the luggage. So, I returned home and decided to go out later. It is surprisingly cool again today, with breezes and gray clouds. Just over the range, the temps are in the three digits, and brush fires abound. Today, in Watsonville, a crashed world war II airplane was discovered when construction workers began clearing a site.
I have been watching the weather reports for Burlington. Looks like it will be in the eighties next week. Tonight's walk was a luxury for me to be in the cool weather. I don't know how I will do in the heat. It is not one of my friends. Well, I should say my body doesn't like it much, only in small doses.
Later, I went out to walk without the luggage, and it was much better, though Mother Nature is sure getting even with me for criticising hot temperatures. It rained! Well, not as heavy as most places in the country where the deluge is being re-born, of course. More like a sprinkle. But, rain this time of year in my region is so unlikely.
I wonder if my Ipod is waterproof? Could I get zapped if it gets too wet? I listened to Tataku: The Best of Kodo, a very upbeat, modern, walk-inspiring album. Dare I say better than traditional Taiko?
"You know you are living a grateful life when whatever happens is received as an invitation to deepen your heart, to strengthen your ability to love well, and to broaden your hope."
I cried when the messages kept coming about Alex. One after another, the updates came through those last weeks. His mother was texting me. Occasionally, we got a chance to talk on the phone.
My blog dedication today is for Alex and his 4 generational family.
When his wife, Amy called me some years ago, we stayed on the phone until 4 o'clock in the morning. She had a lot of questions, and I was not going to hang up on this young mother of two.
When I went through being diagnosed and treated I didn't have anyone to ask. No support groups either. I don't ever want that to happen to another person ever again. So, I didn't mind staying on the phone with her at all.
Alex had Multiple Hereditary Exostoses, like me. His chondrosarcoma was located in the same spot in his body as mine. He had similar surgeries to mine and just about as many recurrences. I felt an immediate bond especially after we met in person.
Alex's Chondrosarcoma was more aggressive than mine and chemotherapy was part of his treatment. It was able to stem the recurrence for a few years while he pursued a new career, succeeded in getting his dream job, and moved his wife and children out of the crowded smoggy city into Big Sky Montana. He absolutely loved it there and looked forward to the future with a smile on his face and hope in his heart.
I met his wife and children some years back when we both went to a gathering of MHE patients. We stayed in touch by emails and phone calls. His mother joined the Chondrosarcoma Support Group when Alex had a recurrence a couple years ago. His Grandparents also joined the group. I met Alex in person just before my father died (at age 90). His family took me in, gave me a place to stay, as I was far from home when Dad was so sick, and fed me. Alex and I had some time together to discuss in more detail our mutual Chondrosarcoma pelvic issues. He was two years older than my son, but seemed to be as old and wise as a saint. I truly admired how he had handled his misfortunes and turned them into a positive life.
When the time came, his children were flown out from Montana, and brought to his side to say goodbye to their Daddy. It was like he was waiting for them before he could leave this planet. A few short hours after he got to hug the children and speak with them a little bit, Alex died.
I had been wide awake all night, unable to sleep not knowing what was soon to occur. His mother texted me early the next morning. I called her and we both cried. It's a difficult journey to make, when the end result is not a cure. And it is more than disappointing for those of us left to deal with his loss.
Alex was a man of strong faith and integrity. It was what kept him going throughout his challenges. He was a shining example to so many. The world has lost a very special person.
******
I sit at the computer reading the daily group emails. Some are introductory, and welcoming. Some are updates on scans. Some are filled with hopes, prayers and good wishes. It's a good group of people. The kind you would like to have over to visit. We have become intimate friends in the bone category.
Everyday I have something to smile about, frown about, laugh about, cry about. The good news makes us all send emails as we celebrate with chocolate, a glass of wine, or a "happy dance" of gratitude for one of our cyber-friends. The sad news brings on a plethora of condolences and then a few days of "silence", or at least not the camadarie we had been building the week before. Life goes on and other members do have experiences to share. Life and death, suffering and healing all in one day, every day, continually makes me concious of the preciousness of each moment, here and now.
I have waited to honor Alex on this site. I just couldn't bring myself to this point until now. It hit me a little harder than some others in my life. Alex's death still stings. It hurts all the more because I am aware that the chances for anyone with a sarcoma diagnosis has the same possible outcome without appropriately funded research. I have often wondered why I managed to survive, grade II dedifferentiated pelvic Chondrosarcoma with seven recurrences. I'm not stronger, smarter nor more faithful than any other CS patients I have known. I don't eat right, sleep well, and I had a very negative attitude while I was going through my years of CS struggles. Though I have changed quite a bit since then. Why does one person survive and another not survive?
The death of Alex, the loving support the group members gave his family, the tributes to Alex by his co-workers and long time friends had a tremendous impact. His life, his death, seemed to have a ministry by bringing so many hearts together in his memory.
I think it has turned me around quite a bit. Examining my life, and pondering what I am doing, makes my walks a bit misty these days. The rest of the country is in a heat wave and here I am snuggled in my little corner of the world, wearing a jacket and long pants to walk in. The cold feels good to my face and hasn't hit my bones too much. So, though there is joint pain, there wasn't limping. I walked the length of "el barrio" today, listening to Los Hombres Calientes on my Ipod, I always wonder why dogs don't bark or come running out to threaten me.
Time passes so quickly, the fog crawls in shrouding the earth. It's not so hot out anymore.
Making Art from the Sarcoma Experience…
My dear husband, Scott, has been battling skull base Chondrosarcoma for nearly 4 years now. It has been a difficult struggle for him, for me as his wife, and for our three children. I felt compelled to build something positive out of this situation, so I did what I do best – I made art.
Artist: Eileen Downes
Title: Beauty and the Brain #1
Medium: Collage of torn magazine papers
Size: 30” x 30”
Private Collection
My name is Eileen Downes; I am a 
Artist: Eileen Downes
Title: Beauty and the Brain #2
Medium: Collage of torn magazine papers
Size” 30” x 30”
Private Collection
I select top-notch
Artist: Eileen Downes
Title: Beauty and the Brain #3
Medium: Collage of torn magazine papers
Size: 30” x 30”
Private Collection
I am currently working on the next painting which will be given to a neurosurgeon in
Artist Eileen Downes presenting
Beauty and the Brain No. 1
to Dr Cully Cobb,
My husband had two craniotomy surgeries to remove as much of the tumor as possible…not all could be removed. He then had proton beam radiation treatment in Loma Linda CA.
When he finished treatment, the radiation doctor asked if he wanted to keep his radiation mask for posterity and he replied, "No." But I saw artistic potential in the mask and gladly took it back to my studio where it hung on the wall “looking at me” for two years. I have made it into an art piece embracing the human spirit. See below
Title: Essence of the Shrouded
Medium: Mixed Media
Size: 60” x 13” x 16”
This piece was exhibited in Lexington Kentucky as part of their city’s spiritual art experience where art made by US artists is hung all over town in various places or worship of all faiths. I hope you enjoy looking at my artwork, and I hope it “speaks” to you encouraging and motivating “words.” It is an honor to be given the gift to create beautiful artwork, but it is a tremendous blessing to share it with others.
More of my work can be seen on my web site www.eileendownes.com
An American President was diagnosed with Sarcoma and it was kept secret. On this American holiday, I dedicate this blog to my very distant kin, Steven Grover Cleveland. 22nd and 24th President of the United States
Remembered as one of the few truly honest and principled politicians, twice President of the United States Grover Cleveland had Sarcoma of the jaw. It is ironic that because of his presidency his Sarcoma was kept secret.
A few months after being in the white house the President asked Dr. Bryant, White House Physician, and friend, to take a look at a "rough place" in the roof of his mouth.
Dr.Bryant took tissue samples to a well respected Pathologist, Dr. William H. Welch of Johns Hopkins Hospital, resulting in malignant sarcoma diagnosis. Immediate surgery was necessary. The next problem, however, was to find a place to perform it without scrutiny of the press. An elaborate plan was hatched.
On June 30, 1893, President Cleveland boarded a northbound train out of Washington DC. If there were any questions as to his whereabouts, the press was to be told he was going to his summer home in NY. Back in those days, even congress had summer vacations. So the President's time away from the White House was not considered unusual.
After leaving the train, then a carriage ride, the President arrived at his yacht located at Sag Harbor. Other asssociated physicians attended,including a young dentist who had expertise in administering the new anesthetic, "laughing gas" nitrous oxide.
Now, this is the part of the story I find so incredibly unbelievable! For every patient I know with a maxillary sarcoma, none have had such a surgery like the President had. Even Grover should not have suffered this indignity!
The President was tied to a straight-backed chair secured to the mast of the ship!
July 1, 1893
The above mentioned chair, and patient, was surrounded by Dentist's gas machine, a standard set up for administering ether, a manually operated cauterizer, tables for surgical instruments, and a chair for another doctor who would monitor vital signs throughout the surgery. The President's mouth was disinfected and rinsed out several times during the surgery to keep him from choking. President Cleveland, because of his girth, was the type who might have complications if he choked.
Keeping his location and the surgery a secret was one thing. But anyone who has performed such a surgery as this, or anyone who has been the recipient may wonder,how did they do the surgery without making an obvious incision? How could this be done without leaving the evidence of an external scar? Well, perhaps I have asked this too late. Now that surgical techniques, and skills are so advanced my question may be uneccessary.
Rather than having to cut a hole in the President's face,the entire operation was done inside the mouth with the help of a dental cheek retractor. The President's friend, Dr. Bryant, excised the entire upper left jaw, from the first bicuspid to just beyond the last molar, and a section nearly up to the middle line of the mouth roof, and back to an apparently unaffected portion of the palate. His was careful to avoid carving into the eye socket. It was imperative that the President's eye continue to appear normal.
About halfway through this procedure, the anesthetist/dentist warned that the Nitrous Oxide gas was about to wear off, so then, Ether was administered and surgery continued.
Dr.Bryant carefully scraped and scooped the surrounding area to remove as many wild fringe cells as possible. The President's bleeding (about 6 ounces) was staunched and the cavity was stuffed with gauze. The operation was completed. Once the effects of the anesthesia wore off, The President was removed from the chair and
placed in his bed. Pulse, blood pressure, and temperature all remained within normal limits. Once aroused, he was given one-sixth of a grain of morphine, after that he apparently never complained of pain as records suggest he was given no more medicines.
Late on July 5, the yacht moored at the President's summer home, and he made his way up the private dock.The world was then told he had been treated for two ulcerated teeth, and a recurrence of his rheumatism.
On July 7, the gaping hole left in the President's mouth was filled with a vulcanized rubber prosthesis in the hopes of his being able to restore normal speech.He spent the next several months teaching himself how to talk again and returned to his normal voice, which was the most important evidence of all that would have given away his secret.
Despite his discomfort, Cleveland was back in his office by July 12. Pain did not cease, so on July 17, Dr. Bryant again advised a trip on the yacht. The plug was removed where they found, to their dismay, that patches of malignant tissue were regrowing. With a make-shift gas job, Dr. Bryant again scraped out the President's mouth. After this there were no further recurrences.
"The President of the United States had confronted a mortal enemy and in all likelihood, defeated it for himself--and the nation."
President Steven Grover Cleveland died in 1908, not of his deadly Sarcoma, but of a heart attack.
The operation successfully remained a secret until 1917 when W. W. Keen, assistant to surgeon Joseph Bryant, documented the famous case in "The Surgical Operation on President Cleveland " in 1893.
Note: There have been some discrepancies within my sources as to the whether it was an Epithelioma or a Carcinoma. Until the final results come back I am sticking to Sarcoma, for the sake of this blog.
Today's dedication is for Manny, who came into the group with several extensive surgeries already under his belt for his Skull Base (paranasal sinus) Chondrosarcoma.
Skull Base Chondrosarcomas occur not necessarily attached to the outside of the skull, but can be located within the skull cavity anywhere that cartilage may be holding all our "headgear" together. According to statistics they usually involve the clivus and the petrous bone. Things can get a bit crowded in there! Chordomas have similar characteristics. Sometimes a person will go into surgery thinking they have a Chondrosarcoma and come out learning they have a Chordoma and vice versa. This particular phenomena had me mystified when the first couple members of the group signed in with skull base diagnoses. It's mind boggling enough to be told you have a rare cancer, but that it is located in one of the more rare locations in the body? But inside the head?
At the age of 31, February 2002 Manny had his first major surgery. A tumor the size of a softball was removed from inside of the nose. In order to do that, the surgeons removed his right sinus. His incision went from the top of his forehead down to the bottom his right nostril. It was quite a shock to him and his family.
In August of 2003 he had his second surgery that removed his nose completely. These surgeries were quite extensive. Enduring such disfiguring surgery, surviving it, realizing that the tumor was finally gone, Manny thought he was done with Chondrosarcoma. All he had to do then, was deal with what he felt was toughest part, getting used to the prosthetic nose. And trying to pick up the pieces and get on with having a normal life with his wife and little one.
He might have been done with chondrosarcoma, but it wasn't done with him. Manny had metastacis to the top of his skull and to the lungs. The tumor on the top of his skull was lying on the brain. In July of 2005 he went through his third surgery which removed part of the left skull. The good thing is, they were able to remove the tumor without damaging the integrity of the brain.
No one would ever be able to damage Manny's personal intregrety however. In my opinion.
It was very difficult to stay employed, and maintain the new house he and his wife had just purchased. Then the new baby came along. What could he do?
Ask questions. That's what he did. He is really good at it. Like one of those bulldogs that hang on. Manny has spent his life learning everything he could in order to get by.
Having Chondrosarcoma needed some answers, too! These drastic multiple surgeries needed to be understood, dealt with, and life needed to be picked up and carried on.
What was this enemy trying to destroy his face, his livelihood, his family? And then, his life? How could he combat it?
The enemy was not going to sneak up on Manny again. He wanted to do everything in his power to bring back his health. With these kinds of challenges in one's life all the superfluous things fall to the wayside and you can focus on what counts and how to keep it counting. Manny was able to appreciate so much that most take for granted.
In August of 2005 he was then diagnosed with having eight nodules on both lungs. So again another surgery was performed. Manny, then stated, "it was worst experience of my four surgeries!"
One time Manny wrote in a message to the group that really touched me:
"I know that I fight every day to wake up every morning and walk, to eat as much anticancer foods as possible, to remove my prosthesis and clean my wound, to do my breathing exercises every hour, to pray and ask God for more strength, courage, and wisdom to continue with this war that I am dealing with. I know that this upcoming surgery is probably going to be my toughest challenge and if my body can’t handle this surgery. I don’t want anybody to say that I lost a five year battle with cancer, when I have been fighting one of the toughest wars in life."
This new way of living life to the fullest kept Manny out of the hospital for a full year. Then, the fifth surgery, this on the lungs again, came upon him. Not just a few months later, there they were showing up on scans again.
With all the research Manny did in the meantime, he decided to go to Stanford and have cyberknife.
This was when I got to meet him, as Stanford is just an hour's drive from my house. Between treatments, we played tourists to the Monterey Bay area, and enjoyed each other's company.
Manny is still doing well right now. Thumbs up to Manny!
***
I didn't fill out my part of the day, Sunday. I was too ill. I don't know what hit me. I was unable to walk in a way that I have not experienced in a very long time. Severe debilitating pain. I am glad that Katsumi was there to help me. He brought my walker to me. But, mostly it was necessary for me to remain in bed and just rest.
Today, I am doing a bit better. At least I can get about reasonably well without feeling that I have been hit by a truck. It is discouraging. Yet, I have often faced such setbacks in the last forty years of survival. I remind myself that it is worth it, that others are much worse off than I, that I will feel better on another day, that it is not the end of the world just yet, that I can get through this, and I have gotten through much worse. So I accept the fact that here it is, my old friend, Pain, who insists that I lie down and rest. Okay, Okay, I get the message!
I'm not going to include photos of my walker, or me resting or Kats helping me. I have already done that. The pictures are a couple favorites of mine.
Many of the pictures here on the blog are those which I have taken myself. Some are linked from other sites. If you want to figure out which are which, just click once on any picture and you can see what the address is of it's true location.
If "blogger" is in the address, it is something I took or that someone sent to me directly to post to the blog. There is also another advantage to doing this. If you see a picture you would like to see better, some of them are quite large once you click on them and you will see in much more detail.
In order to see the previous blog entry in it's original characters, go to View, then Character Encoding, then choose Auto Detect, then Chinese. (If you have Firefox). With Internet Explorer, I believe you go to View, then Language to change it.
When I posted it, I checked it to see if it would work, and it did just fine, but I forgot to think about the fact that not everyone would be able to see it correctly. Mine just naturally comes up in the Asian font because of Katsumi's use of my computer.
郭西苑，1954年10月14日 – 2006年12月1日
一个慈爱的父亲，体贴的丈夫，情深义重的兄弟和朋友。也许他的一生朴实无华，但他如金子般的心永远闪光。他的真诚和善良永远留在我们的心中。虽然他离开了，他的爱仍与我们同在。
在那14个月艰难而孤独地和软骨肉瘤作斗争的日子里，有痛苦，有悲伤，有恐惧，有眼泪，有愤怒，但他顽强地坚持，用他的幽默，笑声，坚强的意志和不屈的精神勇敢地和病魔搏斗。他从来都没有放弃，即使在那最困难的最后的日子里。
西苑，安息吧，我们永远地怀念你。
病情历程
2004年2月由于冬天路滑，不小心摔了一交，右侧髋关节和肩膀疼痛约一个月。（可能造成髋关节内淤血，这也许是肿瘤的诱因）
2004年10月：右脚跟有时会疼。（肿瘤可能已悄悄生长，）
2005年2月：被注意到右腿有点瘸。
2005年5月：右腿感觉疼痛、麻木、无力，像腰椎间盘突出发作的症状，卧床休息稍有改善。
2005年5月 – 2005年9月：6月照了X-光片，没有诊断出任何骨盆的问题，有的医生拿着