Thursday, December 13, 2007
We would like to wish everyone one a
Merry Christmas and a Happy New Year!
This year is almost over and we are so looking forward to 2008. We would like to thank each and everyone of our family members for all you've done of us this year. We appreciate all that has been done for us ,every thought, prayer you name it. You are all great!
I would like to start by thanking Moshura's sister for this great blog you made to keep everyone updated on Moshura's recovery and keeping everyone informed. I really enjoy writing in this blog.
Its amazing how you make this space through you computer where we can let loose on feelings of emotion. I have put in some tears on to this page. I have a place to write what I feel to hopefully give you a sense of what is going on at the time.
I have tried to ask Moshura to write in the blog but he always says one day I will. Yeah right! you know that day will never come, so I thank you ever so much for having this space for all of us to share.
Just to let you know ,Moshura checks this blog everyday.
So since this year is almost to a close I would like to take the time to thank all of you :
I would like to thank SaltnPepper and Medicated Man for getting up every morning since April to accompany Moshura and I to all the COH appointment. Sitting in traffic at times, going without food for hours, sitting for 6 straight hours in the waiting room because the machines were down. Watching our kids while Moshura was in the hospital.
Thank you for being there for me too. Even though you are retired you still get up early to be at the house for hospital, physical therapy appointments. Again driving long hours and staying very close by incase something was needed. We appreciate everything you do for us.
We want to thank Momma Men and the Girls for coming down to COH and go to breakfast once a week at Denney's ,they almost knew our names.
Thank you Momma Men for coming over to cook for us all the good food, I appreciate all the hard work you put into the good cooking.
Thank you also to ODAT, Weezy, CVS Kid, Contayjazz, MomnPop Men, Surviving 3 under 5 all of you for helping us money wise it was a great help in our time of need.
Kriticona thank you for cleaning my house while we were down and watching the kids and running errands for us.
Thanks to all who went to go see Moshura and myself in the hospital, we appreciate you taking time out of your busy schedules to visit the sick. (ha-ha)
We would also like to take this time to tell you each and everyone that we love you!!
Posted by Moshura's Sister at 3:56 PM
Monday, December 3, 2007
Friday, November 23, 2007
From Salt N Pepa:
Cancer … now I know why people are so frightful of such word
It represents the destruction, of the inner solitude, the rebellion of a character,
The uncertainty of the future, the pain unspoken, the torture of the spirit
The drowning of hope
And yet, I pray…
I pray that the Holy Spirit with its magnificent light enlighten the spirit of those
Who are struggling with cancer, cancer of any kind, so they all have the strength and the endurance throughout their treatment!
I pray that all of us that are nearby will find the right words to let them know that we are willing
To make their lives a little more bearable, if that is possible.
I pray too, for the wisdom to make you happy, so you’ll be distracted from the cancer. I’ll try to
Make you laugh. Someone said that laughter is the miracle healer. We need to go back to those days that you, were happy. We need to bring them back to you.
We need to hold on to the dearest things in your life starting with God.
Know that He will not leave you all alone. He is right next to you
Holding your hand as you walk this terrible path
He is within you. Pull your strength from His Divine Light. Ask Him to keep you strong, ask Him
To walk with you and don’t forget us, the ones that love you,
The ones that will be there with you and for you, in the best way we can, because your pain is our pain
Know that you are not alone!
When the treatment is over and the worst has past, we’ll be stronger than before.
We will learn to appreciate life and we will respect each other more
You will know that God never left you alone, yet you might think “For how long?
My life will never be the same?”
You are absolutely right! From now on you’ll have to be aware of any new symptom or re occurrence
I pray that we will have the patience handy for you when you need it.
I pray that we can recognize the effects and reactions that the treatment might pose on you, and that
Our patience and love will acknowledge the symptoms that are identified as the anger, the change in
Character the mood swings, the unpredictable reactions to any situation, and help us recognize those as
Symptoms, from the medicine and not take the offences so personally. We should face the situation with dignity, understanding, and love.
Yet life will seem more worth living. Life is short, and not just for you, but for all of us. Enjoy it, live it, and share it with us. Be happy with us, and thank God for it, with us. Never forget.. You are not alone!
From a friend, who will be praying for you and who’s only wish is for you never to lose faith or hope.
Posted by Moshura's Sister at 1:22 AM
Monday, November 12, 2007
Tuesday, November 6, 2007
A report from Surviving 3 under 5 from the frontlines:
Tables have changed in the household. The wife is in bed and immobile and Marco is running to the pharmacy and tending to his patient as well as he can. I feel for you all. The Wife is a tough patient. Don't think of making a false move...she will give you a glare that will take the blood out of your veins. Ha Ha. She was comparing notes with Marco about hallucinations caused by the meds...I guess she really believes all of the cooky stories Marco use to tell her about when he was at City Of Hope. She says that she just chuckles sometimes about how silly the visions are. On a serious note she is getting stronger and working hard to be more mobile each day.
Love you all.
Posted by Moshura's Sister at 9:49 PM
Monday, October 29, 2007
Well, she's not kicking yet, but she will be! We can't wait to have the wife back soon. No full out hip replacement but a resurfacing of the joint, I hear. I am sure you all can give us more details as they come in. Now its Marco's turn to play night nurse these next few days. I'd like to hear reports about that too! :)
Posted by Moshura's Sister at 9:12 PM
Tuesday, October 23, 2007
Tuesday, October 16, 2007
Monday, October 8, 2007
Friday, September 28, 2007
What happens when both the mouse in the house and Mr. Popeye both seek some much needed rest and can't get it? Take a look and see who ends up winning this Spinach-fueled duel. Warning: Popeye and the Mouse are works of fiction and any resemblance between the characters and persons living or in pain is purely coincidental.
While I am at it, I thought I'd add an interesting blurb from a Harvard patient handbook on Cancer pain I came across:
Myths and facts about pain medication
Many patients, family members, and friends have fears or believe myths about pain medications, especially opioids (narcotics). Learning the facts can reduce these fears.
Myth: I will become addicted to pain medications by using them.
Fact: Simply using an opioid pain medication will not result in addiction. About 3–18 percent of patients using opioids for pain management will develop a problem with drug addiction. These patients often have had previous addiction problems. So, not surprisingly, this is the same percentage of people in the general population that have drug-addiction problems.
Myth: If I use pain medication now, it won’t work later if I have more pain.
Fact: When you use a pain medication over a long period of time, you may eventually need a higher dose or a different pain medication to get the same relief. This response is called tolerance and has nothing to do with addiction.
Myth: Over time, I will become dependent on the medications.
Fact: Dependence means that you will experience “withdrawal symptoms” if you stop taking medications suddenly. This happens because your body has gotten used to the medications. Withdrawal symptoms include nausea, diarrhea, sweating, anxiety, and irritability. If you need to stop a medication, you can avoid these symptoms by cutting down on the medication slowly. It’s important to remember that withdrawal has nothing to do with addiction.
Myth: Using pain medication will cover up new problems.
Fact: If new pain occurs, or a pain you already have gets worse, you will know it even if you are taking pain medication.
Eight tips for getting the most from your pain medication
1. Take your pain medications as directed by your doctor or nurse. Ask for a written schedule, if necessary.
2. Take sustained release or long-acting opioids, NSAIDs, and nerve pain medications on a regular schedule.
3. Keep a journal. Write down what works, what doesn’t, and why. Tell your doctor or nurse so that changes can be made, if needed.
4. Write down how much short-acting medication you take, and how often.
5. Take short-acting medication before your pain becomes really uncomfortable. Your pain will be easier to control.
6. If some activities cause pain, take short-acting medication 30–45 minutes before the activity.
7. Keep your pain medications in labeled containers so that you do not confuse them with other medications.
8. Keep your medications in a safe place that is out of the reach of children.
Do not stop taking pain medications without talking to your doctor or nurse. If you stop taking them suddenly, you could have side effects such as anxiety, sweating, runny nose, tears in your eyes, stomach pain, and diarrhea.
Posted by Moshura's Sister at 2:46 PM
Wednesday, September 26, 2007
Thought I'd add a little tidbit of info of complementary/alternative ways of dealing with pain. I imagine pain is not just a mind over matter situation but some techniques could help Moshura get needed rest! Some things might seem a little cheesy but I think the music and massage techniques (ahem, wife!) may work to reduce anxiety. I found a music for accelerated learning CD from Steve Halpern very relaxing and tension-releasing instead of essay-writing producing. I'll send a copy in the mail so you can listen before you go to bed. It may put everyone in zen mode!
Here are some thoughts from the National Cancer Institute on alternative and complementary ways to deal w/cancer pain:
Thinking and Behavioral Interventions
Thinking and behavior interventions are also important in treating pain. These interventions help give patients a sense of control and help them develop coping skills to deal with the disease and its symptoms. Beginning these interventions early in the course of the disease is useful so that patients can learn and practice the skills while they have enough strength and energy. Several methods should be tried, and one or more should be used regularly.
* Relaxation and imagery: Simple relaxation techniques may be used for episodes of brief pain (for example, during cancer treatment procedures). Brief, simple techniques are suitable for periods when the patient's ability to concentrate is limited by severe pain, high anxiety, or fatigue. (See Relaxation exercises below.)
* Hypnosis: Hypnotic techniques may be used to encourage relaxation and may be combined with other thinking/behavior methods. Hypnosis is effective in relieving pain in people who are able to concentrate and use imagery and who are willing to practice the technique.
* Redirecting thinking: Focusing attention on triggers other than pain or negative emotions that come with pain may involve distractions that are internal (for example, counting, praying, or saying things like "I can cope") or external (for example, music, television, talking, listening to someone read, or looking at something specific). Patients can also learn to monitor and evaluate negative thoughts and replace them with more positive thoughts and images.
* Patient education: Health care providers can give patients and their families information and instructions about pain and pain management and assure them that most pain can be controlled effectively. Health care providers should also discuss the major barriers that interfere with effective pain management.
* Psychological support: Short-term psychological therapy helps some patients. Patients who develop clinical depression or adjustment disorder may see a psychiatrist for diagnosis.
* Support groups and religious counseling: Support groups help many patients. Religious counseling may also help by providing spiritual care and social support.
The following relaxation exercises may be helpful in relieving pain.
Exercise 1. Slow rhythmic breathing for relaxation *
1. Breathe in slowly and deeply, keeping your stomach and shoulders relaxed.
2. As you breathe out slowly, feel yourself beginning to relax; feel the tension leaving your body.
3. Breathe in and out slowly and regularly at a comfortable rate. Let the breath come all the way down to your stomach, as it completely relaxes.
4. To help you focus on your breathing and to breathe slowly and rhythmically: Breathe in as you say silently to yourself, "in, two, three." OR Each time you breathe out, say silently to yourself a word such as "peace" or "relax."
5. Do steps 1 through 4 only once or repeat steps 3 and 4 for up to 20 minutes.
6. End with a slow deep breath. As you breathe out say to yourself, "I feel alert and relaxed."
Exercise 2. Simple touch, massage, or warmth for relaxation *
* Touch and massage are traditional methods of helping others relax. Some examples are:
o Brief touch or massage, such as hand holding or briefly touching or rubbing a person's shoulders.
o Soaking feet in a basin of warm water or wrapping the feet in a warm, wet towel.
o Massage (3 to 10 minutes) of the whole body or just the back, feet, or hands. If the patient is modest or cannot move or turn easily in bed, consider massage of the hands and feet.
o Use a warm lubricant. A small bowl of hand lotion may be warmed in the microwave oven or a bottle of lotion may be warmed in a sink of hot water for about 10 minutes.
o Massage for relaxation is usually done with smooth, long, slow strokes. Try several degrees of pressure along with different types of massage, such as kneading and stroking, to determine which is preferred.
Especially for the elderly person, a back rub that effectively produces relaxation may consist of no more than 3 minutes of slow, rhythmic stroking (about 60 strokes per minute) on both sides of the spine, from the crown of the head to the lower back. Continuous hand contact is maintained by starting one hand down the back as the other hand stops at the lower back and is raised. Set aside a regular time for the massage. This gives the patient something pleasant to anticipate.
Exercise 3. Peaceful past experiences *
* Something may have happened to you a while ago that brought you peace or comfort. You may be able to draw on that experience to bring you peace or comfort now. Think about these questions:
o Can you remember any situation, even when you were a child, when you felt calm, peaceful, secure, hopeful, or comfortable?
o Have you ever daydreamed about something peaceful? What were you thinking?
o Do you get a dreamy feeling when you listen to music? Do you have any favorite music?
o Do you have any favorite poetry that you find uplifting or reassuring?
o Have you ever been active religiously? Do you have favorite readings, hymns, or prayers? Even if you haven't heard or thought of them for many years, childhood religious experiences may still be very soothing.
Additional points: Some of the things that may comfort you, such as your favorite music or a prayer, can probably be recorded for you. Then you can listen to the tape whenever you wish. Or, if your memory is strong, you may simply close your eyes and recall the events or words.
Exercise 4. Active listening to recorded music *
1. Obtain the following:
* A cassette player or tape recorder. (Small, battery-operated ones are more convenient.)
* Earphones or a headset. (Helps focus the attention better than a speaker a few feet away, and avoids disturbing others.)
* A cassette of music you like. (Most people prefer fast, lively music, but some select relaxing music. Other options are comedy routines, sporting events, old radio shows, or stories.)
2. Mark time to the music; for example, tap out the rhythm with your finger or nod your head. This helps you concentrate on the music rather than on your discomfort.
3. Keep your eyes open and focus on a fixed spot or object. If you wish to close your eyes, picture something about the music.
4. Listen to the music at a comfortable volume. If the discomfort increases, try increasing the volume; decrease the volume when the discomfort decreases.
5. If this is not effective enough, try adding or changing one or more of the following: massage your body in rhythm to the music; try other music; or mark time to the music in more than one manner, such as tapping your foot and finger at the same time.
Additional points: Many patients have found this technique to be helpful. It tends to be very popular, probably because the equipment is usually readily available and is a part of daily life. Other advantages are that it is easy to learn and not physically or mentally demanding. If you are very tired, you may simply listen to the music and omit marking time or focusing on a spot.
Posted by Moshura's Sister at 9:52 PM
Sunday, September 16, 2007
Photo: The Wife and Marco and familia enjoying an Angel's game (we won't tell the Dodgers they were dressed in red, and matching, and enjoying a Bud lite!)
Written by The Wife:
Well its been a week since Moshura returned to work. All is well, he says he hasn't missed a beat. Said it feels like he never left. I as well as the whole family have been overjoyed with the exciting news Dr. T had given Moshura on 9/6 saying:
Moshura MAY RETURN TO WORK FULL CAPACITY and NO RESTRICTIONS those words came out in slow motion.
I wish I could have had a camera that day to have taken a picture of Moshura's face. He was very happy to get the A-OK from Dr.T.
Everyone at work was very excited to have Moshura back at CC.
On Monday 9/10 we went to CC to pick up the van. This was a very exciting day.
Moshura woke up as if it were his first day on the job, got all cute (as if he needs help) and like a little kid was anxious to get there. As we arrived to CC he looked so excited to go in and see all of his friends and glad to be back. That was a good feeling seeing him so happy to go back after all he's been through these last couple of months.
I get very sentimental just thinking of all that he has gone through and endured before his diagnosis and after his operation. But the sentimental feeling is of a proud feeling not so much sadness, well, hell I'd be lying... its all in a mix.
You can say there are times when the feeling is very angry but most of all it’s a proud (satisfying) feeling to have my husband as a "CANCER SURVIVOR" and our two kids, all of our family and friends. We have come so far in this path that was put in our life.
I feel proud to have a man who values his life as a husband, father, son, and brother. He faced the most difficult challenge in life and came out with his head held high.
Moshura and I always have conversations about how we see things differently now. We see that fighting or worrying about the little things in life are pointless.
You don't know the real meaning till someone near and dear to your heart is affected by cancer or something so horrible that it brings your whole world to a complete stand still in a blink of an eye. Then you realize what it means that those little things in life are pointless.
We see that when someone in the work place or on the street would talk about one of their loved ones with cancer and we ourselves would say "I'm sorry" but we didn't know what to say at the moment. Now we know what "I'm sorry" means, it means: I feel for what your loved one is going through or went through. Now, we know what it really means.
The one thing we both see is that it doesn't matter what you've done in your past, how good you think your life was going or feel that you will be rewarded for the good you've done. "Bad " things do happen to "Good" people.
We know this is not the end of Moshura's journey with sarcoma cancer. We'll still have the 3rd month check up coming up and the 6th month CT Scan (when that time comes, we will deal with our anxiety) but we will not let it be our constant anxiety in our daily lives. We will take it one day at a time.
Our compadres from Mexico told us this and this should be something we all take to our own lives whether you're sick or not.
"LIVE LIFE TODAY TO THE FULLEST BECAUSE NO ONE IS PROMISED TOMORROW"
No one is promised tomorrow. We all need to take this and use it in our daily lives.
Moshura is living proof that nothing was going to get him down not even "CANCER".
Posted by Moshura's Sister at 10:53 AM
Tuesday, September 11, 2007
I am glad you all had a chance to each celebrate this little boy's birthday last week, even in a modest way. By the look on his face I am sure he thought it was the grandest thing. He looks very happy! Hey, two small cakes do equal one big one! Anyway, glad to know you all were able to do a little something when it looked like it was going to be the roughest week ever. Hope the hip is doing better with the new herbal treatments from el indio amazonico :)
Posted by Moshura's Sister at 12:32 PM
Sunday, September 9, 2007
Thursday, September 6, 2007
There's lots to celebrate today!! Happy Birthday Machito and Happy Exam Day to Moshura!! Glad to know the results from the CT scan came back A-O.K.! By the way, I know times are tough, but are you guys cutting Machito's hair? Tres flores to the rescue!!
Posted by Moshura's Sister at 6:30 PM
Wednesday, August 29, 2007
Unfortunately, the fam couldn't make it to Manhattan Beach last Sunday because of the Wife's possible hip surgery. Treading through sand did not exactly sound like fun after the MRI results came in. Fortunately, ODAT was able to make it. She provides her report below:
one day at a time said...
"I attended the Ocean of Hope Event this weekend in Manhattan Beach where I had the opportunity to meet some wonderful people from the Sarcoma Alliance Organization. Even though I was there for only a short amount of time, I had the opportunity to speak to some of the volunteers and board members of this wonderful organization. I had a chance to share Marco's courageous experience fighting soft-tissue sarcoma and his continued determination to beat this.
Two people that stood out in this event was Dave Murphy, board member of the organization whose wife had sarcoma and Marites Tullius. They both took the time to listen to my story and offered me words of encouragement and support. This event has done alot to open my eyes to this disease. Even though it is something that we never expected or ever wanted for our wonderful brother, Moshura, we hope that organizations like this are available to help him get through this."
Posted by Moshura's Sister at 4:54 PM
Sunday, August 26, 2007
Friday, August 24, 2007
So this is not a Shakira posting - although I am sure the wife and DLP have had their share of hip shimmying - but this serves as a posting to let The Wife know that we are all thinking about you and hoping the best outcome on the unfortunate news of possible hip surgery. Wow, 2007 has been a ^&^&$! Keep us posted on what happens. We're all praying all goes well!!! In the mean time, some not so pretty - but informative - pictures of hip anatomy.
Posted by Moshura's Sister at 7:38 PM
Thursday, August 23, 2007
The main reason I wanted to post this is for public parking access and for a legend to stores in the area... (Click on map to enlarge, [interactivity only on hyperlink].) As if you needed more things to do that day! If you click on the hyperlink, you can hover over locations on map and see what shops and places are there. The paddle boarders are supposed to arrive back near the pier so looks like you should seek out a Sarcoma Alliance tent/booth nearby. Have fun!!! No t-shirts on my side. But take your cash or checkbook in case you want to get some from the Sarcoma Alliance, they're supposed to have some shirts on sale that day. Also, the greatest spa in the world is nearby (Monica does the best facials, Kristin best massage), so if you feel crispy and need some pampering, call ahead....
Posted by Moshura's Sister at 12:51 AM
Saturday, August 18, 2007
Profiles of a few of the paddleboarders and fundraisers for Sarcoma Alliance:
On August 26th I will enter the waters off Catalina Island and embark on a 32 mile open-ocean paddleboard race, finishing at Manhattan Beach. The Catalina Classic paddleboard race may be one of the most gruelling endurance events on water, but shadows in comparison to the daily fight against cancer. Every day, courageous cancer patients devote hours in treatment, preparing for surgey, or resting up for another week of radiation. It is this dedication and strength that motivates me. My involvement in the Ocean of Hope and dedication to this cause is in honor of everyone affected by cancer and to all those who have the strength and courage to face insurmountable challenges on a daily basis. Through the Ocean of Hope campaign, we hope to raise awareness about Sarcoma, a rare and aggressive form of cancer. 100% of the proceeds raised are donated to the Sarcoma Alliance, which helps provide guidance, education and support to those people and families with this deadly disease. Last year through the Ocean of Hope we were able to raise $50,000 for the Sarcoma Alliance! We hope to exceed that amount this year. Your support and donations are greatly appreciated and will endure far beyond the 32 mile span of the Catalina channel. Mahalo!
As most of you know, I will be competing again in the prestigious and grueling Catalina Classic Paddleboard Race this August. For those unfamiliar with the event, “The Classic” is a 32 mile open ocean crossing from the Island of Catalina to the Manhattan Beach Pier. Using only your arms to paddle long "surfboard-like" boards, it is a test of strength, endurance, and will, which can take anywhere from six to eight hours, depending upon conditions. Now with two “Classics” under my belt, I am looking forward to my 3rd consecutive. The experience is both humbling and rewarding. Like the previous two years, I will be paddling for both personal reasons, and for a campaign called the Ocean of Hope. The Ocean of Hope consists of a group of both national and international paddlers who dedicate the Catalina Classic Race to raising awareness for the Sarcoma Alliance, in turn sarcoma cancer. Sarcoma is a rare form of cancer that mainly attacks the connective tissue of the body. Through the Ocean of Hope, I have had the pleasure of meeting Sarcoma Survivors at the finish line. Hearing the stories about their fight and putting a face behind the cause, is what continues to drive me every year to compete. Truly, they are paddling a Catalina Classic almost every day.
Last year I was proud to have raised $4615.00 for the Sarcoma Alliance as a fund raiser. This year I will paddle the 32 mile race from Catalina Island to the Manhattan Beach pier. The Ocean of Hope campaign is a group of paddlers dedicated to supporting families with a loved one striken by this deadly cancer. Please help me reach my goal to complete this grueling paddle and support those with an even more grueling life experience.
Hello and thank you for visiting my fundraising page. I will be paddling again this year in the Catalina Classic, as a part of the Ocean of Hope team. The “Classic” is a 32 mile paddleboard race across the Catalina Channel. As most of you know, last year’s race did not go too well. With strong winds, large swells and my lack of experience in the sport, I struggled for nine and a half hours to finish the race, but with a little luck, I made it. I’m back again this year to challenge the Catalina Classic one more time; not to try to better my time, but to once again join the fight against cancer, raising much needed support for the Sarcoma Alliance. The fight against cancer continues to be a difficult one. Now 5 years after Suzanne lost her fight to synovial sarcoma and with the sudden and shocking loss of aunt Mercedes to leiomyosarcoma, the importance of the services provided by the Sarcoma Alliance and groups like it, could not be more clear. The passing of Mercedes Capati, my wife Ria’s dearly loved aunt was a shock and a tremendous loss to us all. She was much like Suzanne and others who have had to face cancer, in that she fought the disease with the courage, determination and positive attitude that I admire so much. So I dedicate my race to the memory of this wonderful woman. Though I had the privilege of knowing her for only a short time, the impact she had on me was truly profound. The Sarcoma Alliance provides much needed guidance, education, and support to anyone affected by sarcoma. Early and appropriate intervention can make a difference in survival. Together we can make a difference. The survival of this organization is due to the generosity of supporters such as you. Any amount that you can contribute to the Ocean of Hope campaign to help me reach my goal of $5000 would be greatly appreciated. As a member of the board of directors of the Sarcoma Alliance, I thank you on behalf of the many people we serve for your kindness and support.
On Sunday, August 26th, I will be paddling the 32 mile Catalina Classic in honor of the Ocean of Hope campaign. Please help me reach my goal of helping those people affected by cancer. I am also paddling this year's race in honor of my dad. He is the one who taught me about strength and courage. Again, this one's for you, dad! (Pictured above.)
On Sunday August 26th, Team O2H, will for the eighth year, paddle the 32-mile Catalina Classic, from Catalina Island to Manhattan Beach pier, in honor and support of those who are afflicted by cancer. In my 2007 campaign for the Catalina Classic Championship, I have joined in this great team of paddlers to help those who aren't as fortunate as I to paddle this great race. The Ocean of Hope paddlers dedicate the race to everyone affected by cancer and to all those who have the strength and courage to face insurmountable challenges on a daily basis. All donations go directly to the Sarcoma Alliance, which helps provide guidance, education and support to those people and families with this often deadly disease. Your support and donations are greatly appreciated and will endure far beyond the 32 mile span of the Catalina channel. On behalf of the entire team, I thank you for your continued support of our campaign and those that we paddle for. I hope that you will again take this opportunity to support the Ocean of Hope (O2H) and the Sarcoma Alliance.
I lost my mother to cancer and know many others who have been affected directly or indirectly by this awful disease. I’m grateful for the opportunity to join team Ocean of Hope and marry my love of paddling with their fundraising efforts on behalf of the Sarcoma Alliance (www.sarcomaalliance.org). On August 26th, 2007, team O2H will compete in the Catalina Classic, a 32 mile, open ocean paddleboard race from Catalina Island to Manhattan Beach. This is the eighth year team O2H has paddled on behalf of the Sarcoma Alliance and it will be my first as both a team member and a competitor. I’m dedicating my race to all who have battled cancer and I’m confident that their fighting spirit will give me the extra gas to make the crossing. Please join me in supporting this great cause. Thanks, Scott.
My dear friend Suzanne died of synovial sarcoma, a rare form of cancer, in August 2002 at the age of 35 after a 10 year struggle with the disease. After a brief remission, the last 5 years of her life were spent with chemotherapy, radiation and 8 surgeries to remove recurrent tumors from her right lung and around her heart. She also spent that time working as an RN, going to graduate school to get her masters degree and forming an organization called the Sarcoma Alliance. It was during that time that she realized how alienating the rarity of this disease was and wanted to do something about it. She opened a website, gave it a name and tirelessly answered phone calls, emails and letters from the living room of her home.
Suzanne worked hard, laughed a lot and she never complained. She was truly inspiring and amazing. So when she asked me to help back in 1999, how could I refuse? It has been a roller coaster ride ever since. We weren’t sure the Sarcoma Alliance would survive her loss. But 5 years after her death, the organization has grown tremendously and has helped many, many people nationally and internationally. I continue to volunteer for this organization in the memory of Suzanne as well as in honor of many others whom I’ve had the privilege to know and who continue to inspire me as they live with this disease.
The Sarcoma Alliance provides much needed guidance, education, and support to anyone affected by sarcoma. Early and appropriate intervention can make a difference in survival. Together we can make a difference. The survival of this organization is due to the generosity of supporters such as you. Any amount that you can contribute to the Ocean of Hope campaign to help me reach my goal of $5000 would be greatly appreciated.
As a member of the board of directors of the Sarcoma Alliance, I thank you on behalf of the many people we serve for your kindness and support.
See many other fundraiser profiles at http://www.sarcomaalliance.org/master.html?Page=oceanofhope
Posted by Moshura's Sister at 1:37 AM
Thursday, August 16, 2007
For more comments see previous posting, excerpt from the wife:
The Wife said...
ok you guys, it wasn't that bad.
i mean we just had to hear all 4 big wild voices till 3am (salt n pepper, jesus, moshura, surviving3under5)some cars that would pass by , not to mention the motorcycles that would rev as they passed by.
At least(not that we would know)we didn't get to sleep near a fire ant hole. (CVSKid did)
i thought putting up a tent was easy 1,2,3 yeah right.(2 and 1/2 hours later) maybe if salt n pepper had all the right connections in the right place it would have taken a half an hour.
But just think of it this way if we didn't have all this, we wouldn't have our own camping stories. (this was our first camping trip together)
So let see lets turn this adventure around, shall we.....damn the carne asada was good, the chile, torts, rice and beans were delicious.
Seeing Jesus bring in the just caught catfish to the camp site to cook was a treat ,not to mention delicious(all 3under5 attacked Jesus for some of the cooked catfish and Machini was not far behind.)
And what about the melting JACKPOT cake that was funny, salt n pepper had to take it home to put in the fridge till we needed it. All the boys took off fishing while the girls relaxed, ate, and drank. Till it was time to put the tent up that was funny and a neck choking experience.
Pictures speak louder than words and I think we all had an amazing time together in the wild.
HP Momma seemed to love it all. The night got even better with the camp fire and clear night shooting star entertainment was breath taking. Then what about the fish on the grill we forgot about , they didn't look to the same the next morning.
What about being woken up my DLP at 3:30 am to say that Moshura was MIA after leaving on a nature call and didn't return to the nest. DLP ran to call me just to find Mushura (MIA) at the foot of the camp fire like a sleeping little bird with his head leaning forward.
Then we couldn't go to sleep ,so as soon as weezy's tummy said i think we need something to munch one,so we all agreed and started to make smore's at 4am that was great we all enjoyed smore's and we got see the sun rise.
Then we couldn't convince CVSKid to call in sick to work to enjoy the rest of the camp out and so we all started to pack up our camping area and left all the wilderness behind with alot of stories to take back.
I think we can hang once a year and then we know we will be more prepared the next time around.(yeah right) Till next year
(I think it will be fun).
Family time well spent!
Thank you all for coming out to camp and being brave little indians.
Posted by Moshura's Sister at 12:22 AM
Saturday, August 11, 2007
Wednesday, August 8, 2007
I hear Tio B was pushing the Aloe cure at the quinceañera. Well, my mom is probably out at la Superior and possibly consulting with el indio amazonico for gallons of the stuff. So here is a monograph from Natural Standard explaining some scientific evidence on the uses of Aloe and the "grade" recieved based on results.
Aloe (Aloe vera)
Related terms: Acemannan, Aloe africana, Aloe arborescens Miller, Aloe barbadensis, Aloe capensis, Aloe ferox, aloe latex, aloe mucilage, Aloe perfoliata, Aloe perryi Baker, Aloe saponaria, Aloe spicata, Aloe vulgari, Barbados aloe, bitter aloe, burn plant, Cape aloe, Carrisyn, hirukattali, Curaçao aloe, elephant's gall, first-aid plant, Ghai kunwar, Ghikumar, Hsiang-Dan, jelly leek, kumari, lahoi, laloi, lily of the desert, Lu-Hui, medicine plant, Mediterranean aloe, miracle plant, mocha aloes, musabbar, natal aloes, nohwa, plant of immortality, plant of life, rokai, sabilla, Savila, Socotrine aloe, subr, true aloe, Venezuela aloe, Za'bila, Zanzibar aloe.
Background: Transparent gel from the pulp of the meaty leaves of Aloe vera has been used topically for thousands of years to treat wounds, skin infections, burns, and numerous other dermatologic conditions. Dried latex from the inner lining of the leaf has traditionally been used as an oral laxative.
There is strong scientific evidence in support of the laxative properties of aloe latex, based on the well-established cathartic properties of anthroquinone glycosides (found in aloe latex). However, aloe's therapeutic value compared with other approaches to constipation remains unclear.
There is promising preliminary support from laboratory, animal and human studies that topical aloe gel has immunomodulatory properties which may improve wound healing and skin inflammation.
Uses based on scientific evidence
These uses have been tested in humans or animals. Safety and effectiveness have not always been proven. Some of these conditions are potentially serious, and should be evaluated by a qualified healthcare provider.
Dried latex from the inner lining of aloe leaves has been used traditionally as a laxative taken by mouth. Although few studies have been conducted to assess this effect of aloe in humans, the laxative properties of aloe components such as aloin are well supported by scientific evidence. A combination herbal remedy containing aloe was found to be an effective laxative, although it is not clear if this effect was due to aloe or to other ingredients in the product. Further study is needed to establish dosing and to compare the effectiveness and safety of aloe with other commonly used laxatives.
Limited evidence from human studies suggests that extract from Aloe vera in a hydrophilic cream may be an effective treatment of genital herpes in men (better than aloe gel or placebo). Additional research is needed in this area before a strong recommendation can be made.
Early evidence suggests that extract from aloe in a hydrophilic cream may be an effective treatment of psoriasis vulgaris. Additional research is needed in this area before a strong recommendation can be made.
Seborrheic dermatitis (seborrhea, dandruff)
Early study of aloe lotion suggests effectiveness for treating seborrheic dermatitis when applied to the skin. Further study is needed in this area before a strong recommendation can be made.
There is preliminary evidence that oral aloe may reduce the risk of developing lung cancer. Further study is needed in this area to clarify if it is aloe itself or other factors that may cause this benefit.
Canker sores (aphthous stomatitis)
There is weak evidence that treatment of recurrent aphthous ulcers of the mouth with aloe gel may reduce pain and increase the amount of time between the appearance of new ulcers. Further study is needed before a recommendation can be made.
Diabetes (type 2)
Study results are mixed. More research is needed to explore the effectiveness and safety of aloe in diabetics.
Without further human trials, the evidence cannot be considered convincing either in favor or against this use of aloe.
Preliminary evidence suggests that aloe may be effective in promoting healing of mild to moderate skin burns. Further study is needed in this area.
There is limited but promising research of the use of oral aloe vera in ulcerative colitis (UC), compared to placebo. It is not clear how aloe vera compares to other treatments used for UC.
Study results of aloe on wound healing are mixed with some studies reporting positive results and others showing no benefit or potential worsening of the condition. Further study is needed, since wound healing is a popular use of topical aloe.
There is preliminary evidence that oral aloe vera does not prevent or improve mucositis (mouth sores) associated with radiation therapy.
One well-designed human trial found no benefit of topical acemannan hydrogel (a component of aloe gel) in the treatment of pressure ulcers.
Reports in the 1930s of topical aloe's beneficial effects on skin after radiation exposure lead to widespread use in skin products. Currently, aloe gel is sometimes recommended for radiation-induced dermatitis, although scientific evidence suggests a lack of benefit in this area.
*Key to grades: A: Strong scientific evidence for this use; B: Good scientific evidence for this use; C: Unclear scientific evidence for this use; D: Fair scientific evidence against this use (it may not work); F: Strong scientific evidence against this use (it likely does not work).
Uses based on tradition or theory
The below uses are based on tradition or scientific theories. They often have not been thoroughly tested in humans, and safety and effectiveness have not always been proven. Some of these conditions are potentially serious, and should be evaluated by a qualified healthcare provider.
Alopecia (hair loss), Alzheimer's disease, antimicrobial, antioxidant, arthritis, asthma, bacterial skin infections, bowel disorders, chronic fatigue syndrome, chronic leg wounds, congestive heart failure, damaged blood vessels, elevated cholesterol or other lipids, frostbite, heart disease prevention, hepatitis, inflammatory bowel disease (IBS), kidney or bladder stones, leukemia, lichen planus, Merkel cell carcinoma, parasitic worm infections, protection against some chemotherapy side effects, scratches or superficial wounds of the eye, stomach ulcers, systemic lupus erythematosus (SLE), tic douloureux, untreatable tumors, vaginal contraceptive, yeast infections of the skin.
The below doses are based on scientific research, publications, traditional use or expert opinion. Many herbs and supplements have not been thoroughly tested, and safety and effectiveness may not be proven. Brands may be made differently, with variable ingredients, even within the same brand. The below doses may not apply to all products. You should read product labels, and discuss doses with a qualified healthcare provider before starting therapy.
Adults (18 years and older)
Pure Aloe vera gel is often used liberally on the skin. Creams and lotions are also available. There are no reports that using aloe on the skin causes absorption of chemicals into the body that may cause significant side effects. Skin products are available that contain aloe alone or aloe combined with other active ingredients. The dose often recommended constipation is the minimum amount to maintain a soft stool, typically 0.04-0.17 gram of dried juice (corresponds to 10-30 milligrams hydroxyanthraquinones) by mouth. As an alternative, in combination with celandin (300 milligrams) and psyllium (50 milligrams), 150 milligrams of the dried juice per day of aloe has been found effective as a laxative in research. Cases of death have been associated with Aloe vera injections under unclear circumstances. Oral or injected use is not recommended due to lack of safety data.
Children (younger than 18 years)
Topical (skin) use of aloe gel in children is common and appears to be well tolerated. However a dermatologist and pharmacist should be consulted before starting therapy.
The U. S. Food and Drug Administration does not strictly regulate herbs and supplements. There is no guarantee of strength, purity or safety of products, and effects may vary. You should always read product labels. If you have a medical condition, or are taking other drugs, herbs or supplements, you should speak with a qualified healthcare provider before starting a new therapy. Consult a healthcare provider immediately if you experience side effects.
People with known allergy to garlic, onions, tulips or other plants of the Liliaceae family may have allergic reactions to aloe. Individuals using aloe gel for prolonged times have developed allergic reactions including hives and eczema-like rash.
Side Effects and Warnings
The use of aloe on surgical wounds has been reported to slow healing and may cause redness and burning after aloe juice was applied to the face after a skin-peeling procedure (dermabrasion). Application of aloe prior to sun exposure may lead to rash in sun-exposed areas.The use of aloe or aloe latex by mouth for laxative effects can cause cramping or diarrhea. Use for over seven days may cause dependency or worsening of constipation after the aloe is stopped. Ingestion of aloe for over one year has been reported to increase the risk of colorectal cancer. Individuals with severe abdominal pain, appendicitis, ileus (temporary paralysis of the bowel) or a prolonged period without bowel movements should not take aloe. There is a report of hepatitis (liver inflammation) with the use of oral aloe. Electrolyte imbalances in the blood, including low potassium levels, may be caused by the laxative effect of aloe. This effect may be greater in people with diabetes or kidney disease. Low potassium levels can lead to abnormal heart rhythms or muscle weakness. People with heart disease, kidney disease or electrolyte abnormalities should not take aloe by mouth. Healthcare professionals should monitor for changes in potassium and other electrolytes in individuals who take aloe by mouth for more than a few days.Aloe taken by mouth may lower blood sugar levels. Caution is advised in patients with diabetes or hypoglycemia, and in those taking drugs, herbs or supplements that affect blood sugar. Serum glucose levels may need to be monitored by a healthcare professional, and medication adjustments may be necessary. Avoid aloe vera injections, which have been associated with cases of death under unclear circumstances.
Pregnancy and Breastfeeding
Although topical (skin) use of aloe is unlikely to be harmful during pregnancy or breastfeeding, oral (by mouth) use is not recommended due to theoretical stimulation of uterine contractions. It is not known whether active ingredients of aloe may be present in breast milk. The dried juice of aloe leaves should not be consumed by breastfeeding mothers.
Most herbs and supplements have not been thoroughly tested for interactions with other herbs, supplements, drugs or foods. The interactions listed below are based on reports in scientific publications, laboratory experiments or traditional use. You should always read product labels. If you have a medical condition, or are taking other drugs, herbs or supplements, you should speak with a qualified healthcare provider before starting a new therapy.
Interactions with Drugs
Aloe taken by mouth may lower blood sugar levels. Caution is advised when taken with medications that may also lower blood sugar. Patients taking drugs for diabetes by mouth or insulin should be monitored closely by a qualified healthcare professional. Medication adjustments may be necessary. In addition, insulin may add to the decrease in blood potassium levels that can occur with aloe.
Due to lowering of potassium levels that may occur when aloe is taken by mouth, the effectiveness of heart medications such as digoxin and digitoxin, and of other medications used for heart rhythm disturbances, may be reduced. The risk of adverse effects may be increased with these medications due to low potassium levels.
Caution should be used in patients taking loop diuretics, such as Lasix® (furosemide), that increase the elimination of both fluid and potassium in the urine. Combined use may increase the risk of potassium depletion and of dehydration.
Use of aloe with laxative drugs may increase the risk of dehydration, potassium depletion, electrolyte imbalance and changes in blood pH.
Application of aloe to skin may increase the absorption of steroid creams such as hydrocortisone. In addition, oral use of aloe and steroids such as prednisone may increase the risk of potassium depletion.
There is one report of excess bleeding in a patient undergoing surgery receiving the anesthetic drug sevoflurane, who was also taking aloe by mouth. It is not clear that aloe or this specific interaction was the cause of bleeding.
Preliminary reports suggest that levels of AZT, a drug prescribed in HIV infection, may be increased by intake of aloe.
Interactions with Herbs and Dietary Supplements
Based on the laxative properties of oral aloe, prolonged use may result in potassium depletion. This may be worsened by the use of licorice root.
Theoretically, use of oral aloe and other laxative herbs may increase the risk of dehydration, potassium depletion, electrolyte imbalance and changes in blood pH.
Oral aloe can reduce blood sugar. Caution is advised when using herbs or supplements that may also lower blood sugar. Blood glucose levels may require monitoring, and doses may need adjustment.
Aloe may increase the absorption of vitamin C and vitamin E.
Last updated: November 2006.
This patient information is based on a professional level monograph edited and peer-reviewed by contributors to the Natural Standard Research Collaboration.
Posted by Moshura's Sister at 2:20 PM
Sunday, August 5, 2007
Correction: I kept writing paddle boat (those are the one's we have here in the Tidal Basin!) instead of Paddleboard, my bad...
Looks like the Oceans of Hope Campaign is part of a larger competition! So the few paddle board racers that will be participating will be raising money for the Sarcoma Alliance. All of the racers will be taking off at yawn dawn and the race is supposed to be about 6 hours long? Will provide more details about the Sarcoma side. I wonder if they'll have a booth or will be visible there. Here is more info on the details of the race itself.
Here is a nice old L.A. Times story from 1997 recapturing the spirit of the race:
Racers Make Their Own Waves
69 Paddleboarders Use Only Their Arms in 32-Mile Race From Catalina
By: ALAN ABRAHAMSON
TIMES STAFF WRITER
The sky was dark, the sea cold and, off in the far distance, the lights of the mainland twinkling apparitions.
A cannon boomed.
Cheers rang out--and nearly six dozen hardy souls flopped Sunday morning onto long, skinny paddleboards. Building to a full sprint, they edged out of the protected cove of a Santa Catalina Island harbor and into the restless sea, accompanied by the gurgling of escort boats and the steady slap-slap-slap of the waves beating on their boards.
As the first flecks of pink light painted the eastern sky, the Catalina to Manhattan Beach paddleboard race roared into steady throttle--a 32-mile test of skill, strength, will and endurance as well as a celebration of Southern California's unique surf culture.
To win the Catalina Classic, as the race is called, is to achieve nearly godlike stature at the beach.
To finish is to gain the immense respect of one's peers.
To compete is to be accepted into a fraternity of "watermen," those men--and almost all are men--equally adept at swimming, surfing, diving, boating and paddling. And to carry on a culture that dates to such venerable icons as Tom Blake, who some 70 years ago shaped the first modern paddleboard from wooden planks.
Nowadays, boards are made of fiberglass and foam. But contestants still paddle with their hands--no oars--while they sit on their knees or lie flat on their tummies on special boards 12 to 20 feet long, shoulders churning with piston-like repetition.
The race takes 5 1/2 to 9 hours. From Catalina, racers head almost due north toward a buoy off the Palos Verdes Peninsula, then to the Manhattan Beach Pier.
* * *
"It's like doing a marathon with your hands," said veteran paddleboarder Mickey Munoz--with the added challenges of seasickness, hypothermia and the crossing of a crowded shipping channel.
Leaving Catalina's Two Harbors at the island's isthmus, the sea was glassy, the winds calm.
Through the San Pedro Channel, the wind picked up a bit and the sea gained a slight chop.
Nevertheless, conditions were good enough that it became obvious early on that the paddlers had a chance to break the race record, set in 1987 by Gene Rink, now 32 and a Los Angeles County firefighter: 5 hours, 21 minutes.
As Ventura County lifeguard George Kabris, 32, rounded the buoy nearly four hours into the race, he was on record pace.
The stretch from the buoy to the pier, however, is the toughest part--with paddlers forced to fight another condition, a swift current.
Meanwhile, the remainder of the field stretched out behind him for 9.8 miles.
Who would volunteer for such punishment? So many people that entry to the event was limited to those who had qualified in one of four prior races this summer off the Southern California shore.
Why? It's not for fame or fortune. Top finishers get trophies, no cash.
Instead, paddlers said, it's a spiritual thing. "You start and you get into this aura," said Giles Douglas, 46, of Encinitas, who works as a contractor. "You keep your arms rolling and your mind tuned, and you go."
* * *
Fueled by the enthusiasm of Douglas and others, paddleboarding is in the midst of a renaissance. It's a resurgence with strong roots in Southern California's past.
In the 1930s, after Blake revolutionized the shape and weight of boards, making them smaller and lighter, it "caught on like wildfire," said Craig Lockwood, 59, of Laguna Beach, who's something of the poet laureate of paddleboarding--a newsman and playwright as well as accomplished waterman and paddleboard designer.
"You see these old photos, you see these lineups of boards, an infinite line of guys, all getting ready to take off in a race," Lockwood said.
The Catalina Classic was begun in 1955, launched by a young Los Angeles County lifeguard named Bob Hogan. Initially, it was known as the International Paddleboard Championship.
A few years later, in the early 1960s, the surfing boom began in earnest--and paddleboarding all but "hemorrhaged and died," Lockwood said.
* * *
A storm forced cancellation of the 1961 Classic, and dampened enthusiasm for any more contests until 1982, when two more county lifeguards, Karl "Buddy" Bohn and Weldon "Gibby" Gibson, revived it.
Ten paddlers turned out for that 1982 race, according to a story a few weeks later in the Easy Reader, a South Bay weekly newspaper.
After a few years, the race grew to a consistent field of about 30 or 40 paddlers. The 1995 field amounted to 43--including Hogan, then 63 and battling glaucoma. He completed all 32 miles.
Since then, the field has grown significantly. Last year, it was 64. This year, 69.
"I never figured [paddleboarding] would come back this strong. You really make the old guy proud," Bohn said earlier this summer at ceremonies after one of the qualifying races, a 14-mile mini-marathon from Cabrillo Beach to Torrance.
A combination of factors has turned increasing numbers of surfers to paddling.
First and foremost are the crowded conditions and resulting tensions often found at surf spots, called "breaks."
* * *
Paddlers can avoid that antagonism. In addition, surfers obviously need waves; paddlers don't.
"The surfing environment is now so cutthroat," said Charlie Didinger, 52, an assistant principal at Banning High School in Wilmington. "In this group, though, everybody helps everybody."
Added Mark Levy, 40, co-owner of a Redondo Beach coffeehouse: "We call that the 'waterman's spirit.' It's what surfing should be about--what it used to be about."
Capitalizing on that spirit, paddling clubs have sprung up in various beach towns--just as local surf clubs were popular in the 1950s and 1960s.
"The whole thing has an old-style feel to it, a real old bitchin' flavor," said Tim Ritter, 36, a Redondo Beach painting contractor. "In the '90s, things are so different than when I was a kid. But paddling is like surfing was when I was a kid, and that's what's fun about it."
The race is not always fun.
The 1996 Classic was described in The Surfer's Journal magazine as the "paddleboard race from hell." Winds gusted to 20 mph, swells rose to 6 feet; a third of the field dropped out, many from seasickness, some from sheer exhaustion.
Conditions this year were far more favorable.
* * *
Rink led the race early Sunday. But he dropped out after about 2 1/2 hours, explaining to those on his escort boat that he'd hurt his arms Saturday in a fall and didn't want to risk severe injury.
Kabris, who took over the lead, never relinquished it, finishing in 5:23, a bare two minutes behind Rink's record. Kabris said he was not disappointed: "I'm always amazed I can do it. My first goal every year is to finish. It's an added bonus to finish first. And cream of the crop to almost break the record."
Second was Brian Zeller, 27, a San Diego County lifeguard. Third was Buzzy Kerbox, 40, who lives on Maui and paddles to stay in shape for what he likes to do best--being towed into 40-foot waves, then surfing the towering giants.
* * *
As the morning gave way to afternoon, as family and friends surrounded the racers just south of the Manhattan Beach Pier, the top finishers stayed on the beach to cheer for the others--even the stragglers.
And as Catalina disappeared into the afternoon haze, Zeller, nibbling at cubed fruit in a plastic cup, squinted out at the sea and shook his head in amazement. "You can't even see Catalina from here," he said. "It's just amazing to think that all these people paddled on these skinny boards all the way from there to here."
Posted by Moshura's Sister at 9:13 PM
Thursday, August 2, 2007
There's a Sarcoma Fundraiser / Paddle Boad Race happening in Manhattan beach soon. Thought you all may be interested in checking it out. Any time's a good time to hang out at the beach, might as well do it for a good cause. Details here:
Visit the The Sarcoma Alliance and click on page O2H website for details: Here is a blurb from the site.
Ocean of Hope 2007
Dedicated to the Sea of People Affected by Sarcoma
Please join the Sarcoma Alliance on August 26, 2007 in celebrating the 8th annual Ocean of Hope campaign (O2H). This is a day dedicated to the sea of people affected by cancer, and specifically those with sarcoma. It's a day filled with optimism and hope. It's a day where sarcoma patients, friends, families and their caregivers meet, share stories, and bond with supporters like you. It's a day when you know that "You are Not Alone." Team O2H is a group of paddleboarders who dedicate their race in the Catalina Classic to the Sarcoma Alliance. This dedication honors those with this rare and deadly form of cancer and assists them to find the guidance, education, and support that they need. This team of courageous men and women will be individually paddling 32 miles in the Pacific Ocean, spanning six to eight hours in the waters from Catalina Island to Manhattan Beach. On that day, many courageous patients with sarcoma will devote similar hours in treatment, preparing for surgery, or resting up for another week of radiation. Every year the Ocean of Hope paddlers travel across the unpredictable seas while navigating waves and unknown treachery. They are steadfast in their determination to reach the shore. Similarly, sarcoma patients navigate the unpredictable seas of diagnosis, treatments, and uncertainty. Read more...
Posted by Moshura's Sister at 8:23 PM
Tuesday, July 31, 2007
Back to the G rated image... I don't want the feds paying a visit !
The Wife said...
We are back!!!!!!
I want to thank weezy and one day at a time for a wonderful and exciting three day in Laughlin. It was great spending time together.
I've never seen Marco at he slots for a long period of time like i did these past three days. It was nice to see him enjoying the slots and not just putting a 20 in the machine and walking away 3 seconds later saying nada.
we appreciate everything everyone has given to us emotionally, personally, spiritually, herbally, metally and finacially...like Marco said we don't know how we are going to repay all that has been given to us from all of the family.
Thank you from the bottom of our hearts
Posted by Moshura's Sister at 10:00 PM
Saturday, July 28, 2007
Friday, July 27, 2007
Adjuvant Chemotherapy Shows No Advantage in Sarcoma, Trabectedin Shows Promise
July 19, 2007 — The largest-ever study of adjuvant chemotherapy in resected soft-tissue sarcoma has failed to show a survival advantage. Patients who underwent intensive treatment with ifosfamide and doxorubicin did not have significantly better outcomes than patients who were followed with observation only, European researchers told the recent American Society for Clinical Oncology (ASCO) 43rd Annual Meeting, in Chicago, Illinois.
The results were presented at the meeting by Penella Woll, MD, PhD, from the University of Sheffield, United Kingdom, on behalf of the European Organisation for Research and Treatment of Cancer (EORTC) Soft Tissue and Bone Sarcoma Group. The trial involved 351 patients, but 9.5% were ineligible and 4.8% did not receive the allocated treatment, Dr. Woll reported. Patients in both groups of the study underwent radiotherapy if the resection was marginal or if the tumor had recurred. Chemotherapy involved 5 cycles of doxorubicin 75 mg/m2, ifosfamide 5 g/m2 every 21 days, and lenograstim. Of the 175 patients allocated to chemotherapy, 163 started and 127 completed 5 cycles, and 38% had dose reductions or delays, mostly for hematological toxicity or infection.
An interim analysis was performed because survival in the control group was better than expected based on what had been seen in previous studies, Dr. Woll told the meeting. She speculated that this improved survival may be due to better surgery and increased use of adjuvant radiotherapy in this trial compared with those conducted in the past.
Estimated 5-year relapse-free survival was 52% in both groups, and overall survival was 69% in the observational group vs 64% in the chemotherapy group (hazard ratio (HR), 0.621 for both). Thus, the hypothesis that adjuvant chemotherapy improves survival can be rejected, Dr. Woll concluded.
Commenting on this study during a "Highlights-of-the-day" session during the meeting, Robert Maki, MD, PhD, from Memorial Sloan-Kettering Cancer Center, in New York, said that the study showed no advantage for adjuvant chemotherapy. "If there is an advantage to using chemo, it is very small and should be discussed on an individual patient basis."
Experimental New Drug Trabectedin Shows Promise
"We are still looking for better drugs to treat sarcoma," Dr. Maki commented, and he suggested that 1 new contender may be trabectedin (ET-743, Yondelis, PharmaMar/Johnson & Johnson Pharmaceutical Research & Development). He highlighted a study presented at the ASCO meeting in which trabectedin showed clinical benefit in patients with liposarcoma and leiomyosarcoma (L-sarcomas) who had failed on conventional cytotoxics. "When compared with historical controls, the results indicate activity for this novel compound," Dr. Maki commented, although he added that the response rate was low.
Trabectedin is an experimental drug, based on a compound originally found in the sea squirt, which is being developed for use in sarcomas as well as ovarian and prostate cancers. The product is awaiting approval in Europe for use in sarcomas and has orphan-drug designation in both Europe and the United States for use in sarcomas as well as in ovarian cancer.
The study presented at the ASCO meeting was a phase 2 trial sponsored by the manufacturers, involving 270 patients, all of whom had progressive L-sarcomas despite treatment with anthracyclines and ifosfamide and additional agents in the majority of cases. The trial compared 2 regimens of trabectedin, given either as 1.5 mg/m2 by intravenous (IV) infusion over 24 hours every 3 weeks (24-hour group) or 0.58 mg/m2 by IV infusion over 3 hours given weekly (3-hour group) in a 28-day cycle.
The results favored the 3-hour-infusion administration schedule. In a protocol-specified primary analysis, this 3-hour group had a statistically significant 27% reduction in the risk for disease progression (HR, 0.734; P = .0302). The median time to progression in this group was 3.7 months, vs 2.3 months in the 24-hour group. Secondary end points included median progression-free survival, which was 3.3 months in the 3-hour group vs 2.3 months in the 24-hour group (HR, 0.755; P = .0418), and median survival, which was 13.8 months vs 11.8 months (HR, 0.823; P = .1984), respectively.
The researchers concluded that both dosing regimens were efficacious, but "there appears to be superior disease control" with the 3-hour-infusion regimen. They also commented that the 3-hour-infusion schedule was associated with "somewhat more neutropenia and transaminitis without clinical consequences," and no cumulative toxicities were apparent in either group. In a press release, PharmaMar commented that this study confirms the safety profile of trabectedin, with transaminase elevations, emesis, and fatigue being the most common adverse events reported.
Zosia Chustecka for Medscape
American Society for Clinical Oncology 43rd Annual Meeting: Abstracts 10008 and 10060. Presented June 4 and June 3, 2007.
NOTE: The presentation at the ASCO conference will be available to public in September. I'll post it when its available!
Posted by Moshura's Sister at 2:19 AM
Tuesday, July 24, 2007
Yes, I dare. I've been trying to get you guys nice shirts but can't seem to find the right ones, or any for sarcoma. So I decided to design some. Well, I need your help. They are pretty wacky... Will Machin have nightmares over the mini-sarcoma devils... or the punching glove trying to impale them?
Posted by Moshura's Sister at 12:58 AM
Thursday, July 19, 2007
Well, I think Marco's a little sad he's not going to get to wear this t-shirt. But I think we're all glad his oncology team decided not to go through with the chemo. Chemo sucks butt! Based on recent findings presented at the ASCO cancer conference in Chicago, chemotherapy does not work well against sarcomas like Marco's. Check out the story in the side bar. Well, it's a good thing and a bad thing. The upside is that Marco doesn't have to put his body through these toxic treatments at this point in time. The downside is that there is always that sense of doubt, that what if about the positive effects of chemo's cancer blasting abilities. But if 300 people in Europe with sarcoma didn't benefit from it, then I think chemo can wait, and Marco can put this t-shirt on hold... For the meantime, let's keep our eyes on our distant cousin of the sea, the lovely Sea Squirt, who may hold some answers for sarcoma treatments in the form of the new drug Trabectidin or Yondelis as it's called in Europe. I can't wait for more studies and for its approval in the U.S.! For now, there is hope if the drug is needed, with clinical trials available as close as Santa Monica. Remember, these are still experimental drugs. For now, let's just breathe in a while and enjoy the downtime, especially your ding*ding*ding*slot time in the desert ;).
Posted by Moshura's Sister at 10:48 PM
Sunday, July 15, 2007
FROM cancer sucks said...
YEAH!! today is #25 and we have 10 more to go! Yes!
Now we start on the boosters on 1 dose after 5 we go 2 doses and that is it for radiation.
So far the Marco has done great with all the radiation and the doctor saw him today and says everything looks good.
So two more weeks of radiation an ending of Chapter 2 in this obstacle course of life (or journey if that is what you want to call it but a journey should be something you enjoy doing and that is not what we like to do).
I am glad it turned out great and not as bad as it could have been.
God is look'n out for you kid!
Posted by Moshura's Sister at 11:03 AM
Thursday, July 12, 2007
Tuesday, July 10, 2007
Silly Birthday Jokes:
Q: What did the birthday balloon say to the pin?
A: "Hey, Buster."
Q: What did the big candle say to the little candle?
A: "You're too young to go out."
Q: What does a clam do on his birthday?
A: He shellabrates!
Q: What do you say to a cow on its birthday?
A: Happy Birthday to Moo!
Marco your calendars... today is Moshura's Birthday!!!
Posted by Moshura's Sister at 8:41 AM
Monday, July 9, 2007
Well this weekend was really nice.
Surviving 3 out of 5 came up this weekend and she invited Marco and all of us to Hesperia Lake for the evening.
SaltnPepper's other half set a fishing pole for Marco and he hesitated at first, he didn't want to cast it out in the lake then he decided what the hell here it goes no one had to hold his hand behind his back.
Marco threw the first cast of the evening out. I was nice to see Marco toss that pole out the lake.
He did mention he might be ready soon to go out deep sea fishing in a couple of months he said.
Sorry to say no one caught any fish that night but we all enjoyed an evening at the lake.
Marco said he may go on Wednesday to see if he could catch something will see what happens he caught all of our attention when he said that. That is a good sign.
Check out the pics!
-Cancer Sucks aka The Wife
Posted by Moshura's Sister at 10:27 PM
Saturday, July 7, 2007
I think this deserves front page posting:
THE WIFE SAID:
Today was #21 and all went well, we got to COH 1/2 before our appointment and they called him in right away, it took 1/2 before he came out this time because they took some xray film to prepare for the boost next week.
Well we had to hurry home because I had therapy, got home in time to eat and for me to leave.
Well, I had to leave the house and I told Marco why don't you take me to the therapy place and then you can go run some errands and pick me up when your done.
He said no, that is ok we will wait till you come home and then we can all go together.
When I was on my way home I called the house and told DLP to get ready to leave. She says we did all the errands already. (What!) She said yeah we all ready did everything. I didn't think much about it and went home.
As I opened the door the first thing I noticed was that he had someone cut his hair. OMG!
I couldn't believe it Mr. Hot Shot had it all planned out,he was so sneaky.
I told him he had to tell me where they were going just in case anything happened.
Well he said he told me but I bet it was under his breath cause I am sure I would of heard something. So had taken the truck to go run the errands.
DLP said she asked "Are you sure? Daddy". "Are you sure you can do this?" Machini then says ( in a calm voice) "Momma my daddy was driving today."
I told him "Oh yeah, How did he do?"
he says "Um, good um,huh yeah he did good."
Anyway, that was another amazing day here in the desert. Marco dosen't stop surprising me.
I love you honey!
Posted by Moshura's Sister at 12:47 PM
Thursday, July 5, 2007
Hope you all had a great July 4th in that Southern Cali heat. It's been hot and humid and yesterday there was a tornado warning! Wahh? Pecos Bill in D.C.? People were asked to evacuate to local museums and had to go through security checkpoints all over again. Must have been a madhouse! Good thing I had a great view of the fireworks from my livingroom window. Hope you got the video on your cell.
Posted by Moshura's Sister at 1:26 PM
Tuesday, July 3, 2007
Radiation is a form of energy and is everywhere in the atmosphere. Microwaves zap your food with radiation. The sun heats the earth through radiation. And radiation makes it possible to see broken bones through x-rays. Radiation is also used to kill cancer cells and to shrink tumors. In a nutshell, radiation destroys the genetic material that cancer cells use to reproduce. Without the code needed to multiply, cancer cells eventually shrink and die off. The machines used to target cancer cells must be extremely precise to prevent damage to surrounding healthy cells. Radiation can also be applied inside the body using seeds and pellets about the size of a grain of rice and made out of radioactive material which are placed on or near the cancer site. Moshura's radiation is a targeted external radiation therapy using high energy rays to shrink any cancer cells surrounding the area where the tumor was removed from his leg. I imagine the machine used for his radiation is similar to the one in the video above. They can tell you more about it. I think the video provides a good visual of what it may be like. Above is one man's experience during radiation treatment of his brain tumor.
Posted by Moshura's Sister at 2:24 PM
Sunday, July 1, 2007
It's Super Marco!! Somehow, Superman manages to give the Monsters a run for their money, save the girl, and get justice for the bad guy. Maybe I can fit the cancer battle as a metaphor in this superhero classic? Don't think it's a stretch? Moshura, you do look good in blue, I dunno about the tights and cape though...
Posted by Moshura's Sister at 12:04 PM
Friday, June 29, 2007
Tuesday, June 26, 2007
Monday, June 25, 2007
Sunday, June 24, 2007
How can a bad attitude make you sick? The very average Marve and his very average family reveal this knowledge to us with the help of Doctor Thomas and a series of bad-attitude afflicted characters. If anything, we can learn to avoid getting "ticked" off like poor ol' Joe!
Posted by Moshura's Sister at 2:36 PM