If you knew what I know about the power of giving, you would not let a single meal pass without sharing it in some way - Buddha (563 BC - 483 BC)
Tomorrow
Thanks for the comments and suggestions for my daughters birthday. I am not particularly fond of the idea of Chippendales or others places that have men in thongs. So the planning continues.
I robbed my daughter
This April I hope to be released from medical care. I can than begin to move forward and repay all those that have done so much for me. I can not turn back time but I hope to have a birthday party for my daughter. Something along the lines of 21+1 she has been through so much that it hurts. I have caused her such pain that no child should have to endure. Her birthday is in mid April. I do not have a clue as to what I am going to do, I just know it has to be special. I again am asking for help, if you have ideas on how we can celebrate this special event please leave me a comment or text me at (786) 281-8316. I need all the help I can get.
As for my health, I go to see my doctor this Tuesday for a check-up. I still have good days and bad. The cold bothers me now than it did prior to the transplant but I can bear it. I think my hair is receding and the acne from the steroids is still present. My weight has not changed much. The love I have for my daughter has not wavered, but grown stronger. Realizing how important each day we have together is. I hope to see you at her birthday party this spring.
Blood & Bone Marrow Drive Today @ Gabby's on 610 and Telphone
What a year this has brought
Seven months after transplant I am running into a few complications. I am staying at my parents home because I am at the hospital so much. My father takes me to and from my appointments without complaint. My mother is seeing to it that I have a nourishing and complete meal so that my diabetes can be controlled. They are handling the burden of caring for a 40 year old son back at home pretty well. The diabetes is a direct result of the steroids I am taking. These are needed to combat an infection in my liver. I just had a upper GI biopsy performed Wednesday. The doctor just called and I am negative for Graft Versus Host Disease. This is a very good sign. I am consuming about fourty pills and taking 5 insulin injections daily until my liver is taken care of. At times my ankles are the size of my knees and still suffer from cramps. All in all it is not a bad deal, I am being treating at perhaps one of the best cancer hospitals in the world.
I am grateful to so many for so much. This has not only been a venue for me to seek solace but it has been followed by others that have similar problems, hopefully they were able to use some information or find comfort in knowing that they are not alone. As I grow older I want to be younger, but this year is different. It took a lot of work to turn 42 and I am proud to be here..
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It has been almost 18 months since I was diagnosed with MDS. I received over 200 units of blood in a ten month period. Without blood donors I would not be here today. My birthday is October 25, 2009. I am holding the blood drive the day before I am to turn 42. My goal is to raise 42 units of blood. I need volunteers to come out and donate, the process takes about 15 minutes and at the same time you can have your cheek swabbed for a possible bone marrow match. I have since developed Diabetes and am not in the best of health. This event is important to me to keep the blood and marrow donations coming in.I hope to have a table with some literature set up inside where I can meet the many people I have come into contact with over this time.
I have found new email, Facebook, and Twitter friends that have followed on my journey at www.IHaveMDS.com . The website is growing and I need to expand it to put more information out there. We will be selling bracelets to help raise funds to offset some of these costs.Please help me, help others. October 24, 2009 at 11 a.m. We will be hosting our first Blood & Bone Marrow Drive. It will be held at Gabby's 4659 Telephone Road, Houston, Texas. The Gulf Coast Blood Center will be taking donations until 3:30 we would like donors to sign up as soon as possible.
You can sign up by contacting Roger at (786) 281-8316 or
A quote for you to carry
Saturday kicked things off with the bike ride. Please take a moment to read their stories here.
In their goodie bag was a book simply titled "hero", I just read it and a quote with so much truth and so few words hit home. I would like to share it with you, I am putting it at the end of this message so that you can print it and keep it with you. You know who you are.
Some people strenghten our society just by being the kind of people they are. - John Gardner
Lone Star Circle of Life Bike Tour set out today
I am back at my parents house so that I could take my morning medications as well as insulin injection. I held off before hand because I know the effects. My weight is increasing as fast as the bump on my body grow. I feel like the elephant man, but rather than try to fight it I am conceding with the experts and let nature and it's medicine run its course. So, when you see me I do not need to hear about my pimply face. I had high school for that. The Texans host the Oakland Raiders in the morning and I hope to be there. My cousins have been tailgating in the orange lot and are not gettting a team together. You can find them on Facebook by searching "Grilling Gaters" or try this link http://www.facebook.com/topic.php?topic=10306&post=38241&uid=142501542411#/group.php?gid=142501542411 last week they let me man the bar and sell some of the "Cancer Sucks" Bracelets we had made. It was a huge help in this weeks medical costs. I have more bands & T-shirts and hope to see you there. If I am not able to physically walk that well or the pain is too much, my daughter will be there. Thank you Tailgaters for thinking of me when we all need to be thinking how we are going to stop the run over our defense.
We are also picking the winners of each weeks teams on the group page "Grillin Gaters" it is being hosted by Yahoo and here is some information.
You have been invited to join us in Yahoo! Sports Pro Football Pick'em.
In order to join the group, just go to Pro Football Pick'em, and click the "Join Group" button. From there, enter the following information...
Group ID#: 71062
Password: texans
The more the merrier, please pass this along.
A mothers love
While that happened I was also checked for diabetes, which came back positive. Normal blood sugar should be in the 100 range, I am in the 280. The medical team agree that it is being brought on by the steroids I am taking. There is alot to read about diabetes and it is a common disease but this is the first time my doctor has used the word "fatal" so many times in a visit. My body is not like any other. I am susceptible to everything. My mother and father again have embraced me and are willing to care for me. When I was released from my original admission I pushed them away. This time it is too important, I need to eat, right and regularly. I must be at numerous doctor visits, I am not pushing back this time. I am too weak and need the help. It has been over a year since this began and my funding has expired. I have an appointment on the 6th seeking assistance, until than I am selling books on eBay (books that I have bought, not checked out) and pawning tools at the shop.
I am doing my homework on diabetes but this is what I know so far. Mitz, this is what I was trying to say but I was half coherent.
I need to inect myself with insulin twice daily. When I do this my blood sugar level goes down. It goes down because the insulin helps the sugar get into the body's cells, where it belongs, instead of staying in the blood. Once inside the cells, the sugar provides energy to the body. To make it easier I am taking my insulin with a pen. It has a short fine needle on the end, you turn a dial to the prescribed dose and press a plunger to inject the insulin. These are convenient because they are disposable, discreet, and easy to carry. This was the best choice for me.
There are some side effects of the insulin. Redness, swelling, or itching at the site of the injection (this is happening already). Low blood sugar if you take too much insulin, don't eat enough, or are more active than usual. When the blood sugar gets too low I can feel weak, tired, hungry, dizzy or shaky. If this happens I should eat or drink something high in sugar. Such as four ounces fruit juice, or regular soda pop. They also have glucose tablets. Mints seems to be the item of choice since they can be chewn quickly.
This all a whole new world to me and puts me on the road of another challenge.
Today was my visit with my head doctor, results of biopsy are back. I have acute graft versus host disease. This could be fatal with the other news. My medicines have increased and the collection of pills I take continues to grow. Without insurance life can be a nightmare. The lint in my wallet is so lonely it has left. Bank cards are turning a shiny negative red as I type. But, I have two good and clear library cards. I am a proud holder of both a county and city library card. They will be used to check out books and use their computer (once this laptop finds itself at Northside Pawn Shop).
So until I get to another computer I want to say thank you for all the prayers and words of support that I have recieved. The battle against cancer is being won, but I am now being attacked by infection inside my liver.
Sarah Palin has scribed her memoirs. I am not sure how the reading will be but I like the cover. It sits atop the best sellers list and has not hit the shelves. I have it on reserve at the library.
The blog hit a new high
Last post before I go to my parents and wait for the call that my bed is ready.
Lone Star Circle of Life Bike Tour
Local Events: Houston
Day 1:
Saturday, October 3, 2009
Houston Kick Off Event
The Lone Star Circle of Life team will kick off the 2009 tour in Houston on Saturday, October 3. The local event will be held at the new LifeGift facility at 2510 Westridge, Houston, 77054. The team will arrive at LifeGift at 8:30 a.m. to meet their honorees and tell about why they are riding in the 2009 Lone Star Circle of Life Bike Tour, then the riders will introduce the person they are honoring. Following the reception, the team will leave for College Station, officially kicking off the 2009 tour.
Information about blood, tissue and organ donation will be available on-site and a drive for the National Marrow Donor Program Registry will be held. More information about the event will be posted as it becomes available.
Event Coordinator
For more information, contact:
Anne Marie Cervenka
Gulf Coast Regional Blood Center
1400 La Concha Lane
Houston, TX 77054
Phone: 713-791-6697
Day Riders
Denise Van Kuiken – “I am fortunate to work for LifeGift. Every day in my work I see incredible people, who, in their time of grief can still think of others and say “YES” to organ and tissue donation. I ride in honor of them and the people they have saved!”
Kimberly Davis – “As a Managing Director at LifeGift, I've worked to further organ and tissue donation in southeast Texas for the past 20 years. I so enjoyed the two times I've ridden before and I'd be very proud to do so again.”
Beatrice Hodgson – “I want to ride to raise awareness on organ and tissue donation.”
Steve Marucci – “I’m involved with Organ and Tissue donation on a daily basis. I lead teams in the recovery of organs and tissues for transplantation in addition to educating the public on the uses and needs for donation.”
Jessica Leibold - Jessica rides because she believes in organ and tissue donation as a gift.
Ken Cole - Ken rides to support donation.
Basil Housewright – The tour title honoree, Brian Brasseaux, was a friend and his family continue to be my family’s friends. His widow Christine is a running coach of our local marathon training group. Her strength to persevere inspire us all. I am a cancer survivor, diagnosed with non-hodgkin’s lymphoma in 1999. I run marathons and have completed four MS-150 rides. I love riding and am honored to be a day rider with the team.
Roger Contreras – Blood and Marrow Recipient
At age 40, Roger Contreras couldn’t have felt in better condition. He was working as a plumbing superintendent taking on projects left and right. One day as he took a “break” from work to finish up tasks around the yard, he felt something that would forever change his life. He was taking out the trash, when his knees buckled, he began breathing hard and feeling dizzy.
After several tests, doctors informed Roger that everything he was experiencing was being caused by a disease known as Myelodysplastic Syndrome, a disease in which the bone marrow does not produce enough healthy blood cells. The diagnosis devastated Roger and his family as they knew the journey to finding a cure that would require a bone marrow transplant, would be a long one.
As Roger underwent numerous chemotherapy treatments and received more than 200 units of blood, he began journaling his experience and using social media networks in hopes that someone would listen. His blog, www.ihavemds.com, has received attention from several potential donors and even other patients hoping to find their life-saving match.
While he finally won his battle and received his bone marrow transplant in March of 2009, he continues spreading the word to be able to save others battles in the future.
This should be pretty interesting and all are invited to come out.
Making plans for a return admission to MD Anderson
My doctor is concerned about my liver and has scheduled a biopsy. Sugar levels have increased to diabetic levels and that will be checked as well. Chances are the steroids are raising those levels. The unspoken scare is the threat of graft versus host disease, this is worse case scenario. Just when you think you are out "they pull you back in."
It has now been six months since my transplant so if there are going to be complications this is when they appear. Hopefully it is all the work of an overactive imagination and lack of a good nights sleep, but I have to wonder. Ponder really, what have I done with those 180 days, half of which were spent in the hospital or daily outpatient visits.
It seems as though I have just been existing. I can not work and take daily naps, I have given up hope on a social life because my personal life is in such disarray. The drugs have played some effect mentally, but now I have noticed physical signs. The color of my skin has darkened without being in the sun. I have a mild case of acne that I have not seen since I wore parachute pants with a Members Only jacket.
There are days when I am driving and wearing boots that I feel I should be on a jobsite, producing. This cancer, this nightmare has turned me into a medication nightmare. New ones are added while some are put on hold, but I keep following orders to the disagreement of my insides. My family continues to support me even though I keep them at a distance.
Next month I have a birthday. The day before I will be hosting a blood drive at the Gabby's on Telephone Road. I am asking for donors to take time out to come and donate, it will give me the opportunity to see some old friends and family that I have missed over the months. Please take the time to sign up.
My daugher is developing into a young woman with a life of her own. The struggle to help her while my hands are tied tug at my heart. She should not have to worry about me. I should be able to support her, neither of which are happening as planned. The roller coaster ride that has become my life is no longer filled with peaks, it is as if each valley is followed by one that plunges me even deeper. With no end in site, it continues to taunt me with good days. Making me believe I am normal. On days my outward appearance is such, but it may be due to the pain killers and anxiety meds.
As I sit here and look towards my future the season premiere of "Greys Anatomy" is airing. I would change the channel or better yet, throw the remote at the screen. I don't have the fight to do either. There has been enough medical drama in my life to last several lifetimes and I do not need to see more on television. They are broaching the subject of organ donorship, this has been asked of me but I do not know if there will be anything of value when this ride ends.