Please visit and book mark my website at www.IHaveMDS.com don't forget to visit the message board and sign the guestbook. Thank you.
July 23, 2008 5:11 am.
I took my third dose of my chemotherapy medication 46 minutes ago. After the first two pills I felt pretty good. I am adjusting the time I take it so that it will be taken before sleep. Waking up at 4pm yesterday I took a shower, a long one. I shampooed, rinsed, repeated and still was not out of breath. It was time to push it to the limit, I conditioned. I was even able to scrub off the tape residue from where they insert the IV. All this and I was still standing, not dizzy, not gasping for air. Feeling the way you probably do everyday, it was a small step for me. The lady of the house noticed a difference in my appearance and ordered pizza for dinner. I ate 5 slices of large Domino's Meatza. This is something else thathas not been done in awhile. My appetite is coming back. That means weekend at Mom's for home made chile relenos, menudo, caldo de res or all of the above.
This first round of chemo is 28 days long and I am barely into day 3, but if the first 2 days are any indication, the future just got brighter. If hurricane Dolly leaves us alone and I can wake up at a decent hour I may venture out to a barber, than who knows maybe even shave these 12 hairs on my face I try to pass off as a beard. I love you, Elle. What a difference a pill makes, granted it is a pill in the neighborhood of a few hundred dollars, but it makes a difference.
I am wide awake, this is a wierd feeling at this hour. I could keep typing but I have not read in awhile. There is a new author that I started, not a real page burner but it was a loaner book. I am going to start something like it, go to the homepage to find out more. Did anyone catch my subliminal message in the paragraphs above? Thanks for reading.
July 21, 2008 1:00 pm.
Today was the scheduled delivery date of my much anticipated drug. I waited by the door like a puppy awaiting his owner. I jumped to my feet at the passing of each vehicle. FedEx arrived about noon. I ripped open the package, read the warnings and took my first pill. This prescription can save my life. I learned alot in the first 100 days of this disease. I want my life back. I want to go to work and provide for my daughter, something I did not always do in the past (for various reasons). My parents need to be proud again, they instilled good values and taught me well, they deserve more from me. I want my sister not to worry about me (as much) she has MANY children of her own and needs to spend her time with them, not worrying about her brothers blood count. These are just some of the things I want to do when I can walk around the block again. When I can go an entire week without the need of a blood transfusion. One of the biggest task I want to start and know I will never accomplish is to repay the kindness, and generosity of my two cousins Mr & Mrs Maradiaga.
I would like to thank you for the comments & emails. They do indeed brighten my day. I am getting tired again, so I am signing off for now. Take a moment to read our message board on the "Your Stories" page. I will be back.
The First 100 – My introduction to purgatory on earth
July 21, 2008 3:00 am.
Four months ago I was a plumbing superintendant overseeing a multi-million dollar project. I recruited my staff, trained, supervised, and mentored them. Maintaining labor and material costs while maximizing productivity of a quality product were traits that drove me. Adulation from peers, and superiors was something I strived for. My experience and training in the field is well noted. Pressure is part of the project. Deadlines, inspections, manpower issues - stress was breath. I ate antacids and Tylenols throughout the day to relieve the heartburn and strain on my chest. This is not a cover letter, or an introduction to my resume. It is a statement of fact as to what I was before April 10, 2008.
This was a day that I started to work in the yard. I went to bring in the trash can and made it from the driveway to the garage. There is where my knees buckled and I began breathing hard. Light headed & dizzy I went inside to get a glass of water. I went online and found a clinic in the Tomball area, asked the cost, $54.00 for an initial visit. With $54.00 in my wallet I drove to the clinic. Once there the doctor saw me and immediately told me that I could not be helped there. I had to go to the emergency room. They offered transportation but I turned it down deciding to drive myself. Having to see a doctor is something I had been avoiding. When I had my last birthday a few of the ladies in my family brought up the topic of a routine visit. I said I would look into it. Who takes the time to go some place that they are afraid of? Needless to say, I had not seen a doctor in a few decades prior to this date. Now I would be seeing more than any person should see in a lifetime.
When the nurse had me in the observation room my heart was pounding, I was gasping for air and my arms were starting to tingle. The response of the emergency room staff was incredible. They ran an EKG, catscan, X-rays. The whole time I am laying on a gurney in wranglers and work boots you overhear the possible diagnosis. Heart attack, stroke, ruptured ulcer. I let them take off my shirt for the tests but I was keeping my pants and boots on. All that I needed was maybe some asthma medicine or a pill, even a shot but I was not staying there. (I think that was a run on sentence or improper grammar, but when you saw all the medical drama going on at the time you would understand why my English skills were not up to par.) A male nurse walked by and noticed my skin color; he suggested that I may be hemorrhaging. That was something that had not been suggested so blood was drawn. After an immediate reading they found my HGB level to be at 5.0, the norm is 14.0. With no blood in my system I had no oxygen. I was typed & matched and prepped for my first blood transfusion.
Since that day I have been living in limbo. It took months to find the cause of my illness and I still await a cure. FedEx should deliver a much anticipated prescription drug later today. It will not cure me but should extend the period of time between blood transfusions. I received my 26th pint of blood yesterday. Actually it was 4 pints of type O positive administered intravenously within a 24 hour period. The only cure is a bone marrow transplant. My doctor told me that they could not begin a donor match until funding for the transplant was set.
I started this message with so many thoughts that I wanted to put out there. My mind keeps wandering. In 2 ½ hours I should be waking up and getting ready for work. This is the summer, the hottest time of the year. You can work an endless amount of hours. The sun and heat never bothered me. I want to put my boots back on and get muddy. Sweat dripping down the spine of my back, bones aching that is what I want to be doing this afternoon. Not waiting on a FedEx truck. I do not make plans anymore; no one knows when I will need another transfusion or when I will sleep 20 hours in one day. Frustration has been an emotion I am learning to live with. There is a cure out there but it appears to be out of my reach. Loneliness is a constant factor. I have the love and support of family but that is different from sharing a precious moment with a special woman. Insomnia has set in, I hope to see the sun come up and than I hope to take the trash can out to the curb. That is my goal for today. Tomorrow is a lifetime away. Please take a moment to read more of my story at www.IHaveMDS.com
July 12, 2008 2:34 am.
Saturday am. So much to say. Do not know where to start. Am going to change the pace and make myself feel good. I had recieved an email from my daughter. Without her permission I am going to repost it here. I like reading it.
There is no other man better than my daddy.He's one of a kind, a man that will last forever.He gives me the example of what to look for in a young man.He's the best father ever; I could never ask for better. He takes every gray and dark day and makes it better than ever.
He fulfills all my needs and helps me when I'm in need.My daddy is so wounderful no one could ever compare to the person he's been to me in my life. He's more than just a dad, he's a wonderful man.If I had a choice to ask for more, there wouldn't be a single thing I would wish for.
My dad is the best gift I've ever had and will ever receive. No other's love has been better and will never compare to the love I HAVE for my daddy! When the day comes for me to get married,it will be someone similar to my daddy!
I love you, Dad.
July 9, 2008 1:29 am.
Monday was my appointment with the Hematology dept. I checked in with a 6.8 hgb level. Iwas admitted for the night. Got a refill with numbers 20, 21 and my 22nd pint of "the O+" I have now had more pints of this than I have of Bud Lite over the last 3 months. My final results came in, I tested negative for PNH ( Paroxysmal Nocturnal Hemoglobinuria (PNH) is a disorder in which the most immature of the blood forming cells in the bone marrow, the stem cells, are lacking proteins that prevent them from being destroyed by the body) this was the last remaining test needed to conclude my diagnosis.
I have MDS. Nothing else just a rare bone disorder that can only be cured by a bone marrow transplant. I can not imagine what the total cost for the procedure would be. That is why I am at the mercy of the hospital to schedule and accept an uninsured patient. At the same time I need to find a donor. My sister is a possible match, she would have to be tested. How do you ask someone to save your life? Your kid sister at that. I used to be the big brother. I protected her from everything frogs, bugs, boys while growing up. Over the last few years she has become my protector, adviser, friend. If there is not a match I am entered into the national data bank. It could be months until the procedure is performed. I am now receiving transfusion at a weekly pace. The needles scare the BLEEP out of me and I still cover my eyes and want to cry. I can not take much more of the poking and probing. What I am going through can not be normal.
There is a medication available that may extend the time between transfusions, Revlimid this drug is very expensive. Over $200.00 a pill that must be taken daily. Good news arrives. Wearing a gown with my boxers exposed and a needle in my arm I receive a great phone call. It is long distance, I answer and it is a medical company. My first thought is that my bill collectors are on the prowl, looking for cash. I just remembered a phrase. Squeeze blood out of a turnip. Kind of funny and appropriate. I have neither cash or blood. Back to the phone call. I said " This is he speaking" and waited for the onslaught. Much to my suprise, it was the offices of Revlimid. they received my application from the Doctor at Ben Taub and approved me for my first months supply of Revlimid. If all goes well I can take my first pill by Monday. Good news can strike at any time. I have not been praying as much as should, I want to and am always thinking in my head but have not got down on my knees. I should have, I will. I have family, friends and people I have yet to formally meet praying for me. The prayers are being answered. My hope and faith in my recovery has been rejuvenated.
When I am in need of a blood transfusion, it depletes my body of oxygen. Shortness of breath is the main symptom I suffer. Being moody, irritable and tired is another. I am basically experiencing "that time of the month." I apologize and thank my cousins for seeing me through this time.
