Wednesday, September 29, 2010
Tuesday, August 24, 2010
In all honesty I am scared out of my mind, I have cried, held back tears and bit my tongue til it bled. I do not know what the future holds, that will be discussed the 2nd of next month with an orthopedic surgeon.
I know I feel like I did something really bad before and must continue to fight for my life. Cancer (MDS at that, a rare form), infections, Diabetes, now fluid in my hip. I am a poster child for fund raising. My windows do not go down in my truck and I have no A/C. I should be in the hospital soon for heat stroke if I keep driving it. But I do not think they will change my compressor or thermostat for heat exhaustion.
I am not the first to say it nor will I be the last but "Cancer Sucks". It is not a tragic novel you read only to find the prince to save the fair maiden. It is not a trilogy, but a comprised set of lifes offerings. The cards you are dealt, the only distance is this is for more than money or a bracelet and I can not "FOLD" I have to play what has been dealt. Because every hands a winner, its just a matter of how you play that hand. My cards will be dealt on the 2nd and it may be my "all in moment" but like my baby girl told me on the phone, we have come to far, we beat cancer. My baby is my ROCK. She put me in check and dried my tears. I taught her to play Texas Hold 'em on the beaches of Southwest Florida when I go get these new cards she will be at my side. We play pretty good together, its been a while but it's like riding a bike. A beat-up one.
My cousins have opened their hearts and home to me since before this began. I was hoping to be at work first week of October. I really am turning into Alan from "Two & 1/2 Men"
Thursday, August 12, 2010
sac·ri·fice /ˈsækrəˌfaɪs/ Show Spelled [sak-ruh-fahys] noun, verb, -ficed, -fic·ing.
the surrender or destruction of something prized or desirable for the sake of something considered as having a higher or more pressing claim.
I find it hard to hang on some times. I am at the peak of the mountain trying to climb and make it to the top, but I am hampered by mother nature. To let go now would mean certain death. Yet the peak seems so far.
I have trapped myself into a form of isolation. Going what I went through runs you through the gamut of emotions. Its seems most have been spent and I still have two months until I see my doctor. How soon will I get my life back? As time passes I find other complications, my left leg has a searing pain that run for about five minutes every time I stand on. I need a cane but vanity will not allow it. I have yet to see a man wear a hard hat and depend on a cane. Therefore I grit my teeth and hobble along.
Trying to balance a budget when you do not have an income makes things difficult some things are mandatory, gas in the truck, hygiene products, food but than there are the ones you have to weight the importance of. Medicines versus paying phone bill (phone bill, lost this month. Please do not think I am ignoring you, it's just that it is a luxury I can not afford at this time. The future looks less bright with payments going to Medicare part A & B. If my cousins did not allow me to live in a room in their home I am sure I would have eaten the 40 plus bottles of prescriptions along with a bottle of Jack Daniels.
My family loves and cares for me but here I am allowed to walk into this room and stick my head in the pillows and cry til I fall asleep. My cousin is fighting her own battle with cancer. She and I were inseparable growing up and now in the prime of our lives we are diagnosed with this. She was the model patient/warrior facing chemotherapy and radiation on a daily basis. I went with her once to a treatment and she asked for little and fought through what ever pain she had. Her vitality and love of life are contagious.
October 5 is when I go to MD Anderson. I hope for a clean bill of health, I am taking my prescriptions and trying to eat better. But the sleep patterns continue to cause havoc. I am wide awake 40 minutes past midnight.
The 28th of this month I will be hosting a blood drive at Gabby's on Telephone. Donors saved my life and most donate on a regular basis. I want this time to be special I would like to offer some type of goodie bag to express my thanks. So I am asking for help in that department. Anything you could share would be great. Monetary donation are going to pay for catered lunches. If this means my tools and laptop go back to the Pawn Shop than so be it. This is important to me. It is also the closest date I could get to the Birthday of my sister. She gave me life, I need to give back.
Thursday, July 29, 2010
I have been asked how people can help out with the blood drive if they can not give blood. The next blood drive will be at Gabby's on Telephone Road, August 28. I was hoping to put together some goodie bags for the donors. If you or your company have coupons or other items please let me know. I am also accepting cash donations to pay for some catered food items. When the donor leaves from Gabby's that day I want them to know how much I appreciate them. Basically, I want to reward those donors that come out to give the gift of life. I can take Paypal with the link above or you can send to email@example.com no gift is too small.
Thank you very much,
Without these blood drives I would not be alive today. It is a cause that is very important to me. My sister and I were chosen to be in the Gulf Coast Regional Blood Bank's 2010 calendar. We are Mr. & Mrs. November. I was able to get a few extras that will be available on the day of the event.
Both are women but how they conduct their lives makes me want to do something. Like Forrest Gump, I was just running and running. I am determined to sleep no more than 8 hours and start daily calisthenics. Although I am under doctors orders with my treatment, I could easily use that as a crutch. I do not want crutches. It will be two months til I can work again and make an income. I have to choose whether I need a cell phone or do I need 12 more prescriptions. Obvious choice, I will resort to using smoke signals from the Weber grill out back.
I am heading to my sisters to watch my nieces and nephew while she works. She has been the shoulder that has felt my tears. I feel like I reached a point in my recovery where things will go positive. As long as I can find inspiration I am invincible. I like girls.
Tuesday, July 20, 2010
Being admitted stripped me of many things. Dignity was the biggest. I find myself asking why me. I try to volunteer to help others, I read to escape but I keep coming back to the same place where I want to feel sorry for myself. Like life owes me something. I saw cancer, fought it and am winning, I deserve something. A sticker, I got. Maybe a happy face drawn on my arm.
Do not take your health for granted, and hopefully you are sound asleep as I type this.
Thursday, July 8, 2010
I want to wake up before dawn and prepare my lunch. Put on my Wranglers, boots and a Commit for Life T-shirt. Drive my truck to a muddy field that I will help convert to a hospital, school or other building. I need to transform these smooth palms to the blistered, calloused hands that grip pipe wrenches as if it were second nature. To feel the sweat drip down the back and hoping for a slight breeze to cool you down. The weight of my hard hat multiplying as the day progresses. This is what a man should be doing.
After receiving only my second round of vaccinations this has been placed on hold. All I can do is try and fight the lethargy that the prescriptions bring. Try to regulate my sleep so that I am not awake at midnight and taking naps like a child during the day. I am having to learn to control my anxiety.
Tuesday, July 6, 2010
I had a more extreme round of chemo prior to my stem cell transplant. This caused more pain and weakened me to the point of being bed ridden. It also took a full head of my hair. The recovery from the full effects trickle down to today. I still struggle with sleep and am lethargic through the day.
Cancer knows no boundaries and it definitely does not discriminate amongst income classes. It is a silent terror that can attack anyone, anytime. I am in the final stages of my treatment and trying to do more volunteer work and help educate those that are new to this world. Today I will be going to the hospital, but not for my own medical treatment. A member of my family has been diagnosed with cancer and is undergoing radiation and chemotherapy. Today is the day for chemo, I will be going with her. She is a strong determined woman and may not need me there, but if she needs another blanket or a glass of water I will be there for her. Sometime just knowing you have someone at your side is enough to put you at ease in an already difficult situation. I just hope I can help.
Saturday, July 3, 2010
Roger, I don't know the full extent of your transplant story but I can certainly empathize about the loss of income and watching everything you'd worked for over the years disintegrate; my unrelated allo transplant story's been different in that I was given every warning you got, the same rounds of immunizations, but encountered no post-transplant infections or GVH issues. I returned to work fulltime relatively soon, and with young behavior-disordered kids at an alternative school---not exactly what my oncologist would've recommended, they advise against working with kids who can be little germ factories in regular classrooms, but in my job moreso, since we have to do a lot of "hands-on" stuff. But this was my line of work, and I think my oncologist recognized that my mental health was helped a lot by my job, so she's cautiously okayed it---and I wash hands religiously, use hand sanitizer several times daily, and have had no sick days, as opposed to my fellow employees (who got swine flu, etc.)---but you never know, I just take one day at a time. The new immune system has turned out okay so far for me, knock wood.
When you've had serious infections, like it sounds like you have had, they are understandably very cautious. And I can really relate to your subject line about not bringing in an income....I went to work 6 months after BMT, but had 6 months off (after my AML relapsed) prior trying to get into remission, waiting for my donor to be ready, etc., so a full year off work in total. And my husband's a self-employed graphic designer, so I was the health insurance provider for both of us. The $$ I've paid for COBRA---don't get me started. And his business was down due to our lovely economy. I had short-term disability, when that ran out, I never applied for long-term as I was determined to go back to work (I'm hard-headed) but that is certainly an option for people in our situations. But we went through all our retirement savings, bank accounts---any assets we have, we have used. I thought my first round through AML treatment four years ago was financially devastating for us, however that was a drop in the bucket compared to transplant. Some poeple do web pages where you can contribute funds, or have friends and families organize fundraisers---all viable ideas, I just never did that, it was hard for me to ask others for money when everyone was cash-strapped in this recession. But I do know people who have been very grateful for fundraisers that have been successful in their communities.
I'm 2 years post now, Roger---still owe my transplant hospital money (and I had health coverage) and I work during the school year about 60-65 hours a week (I have a parttime job, too) because frankly, I need the money. I feel great, normal again---I always ruefully tell people the only way I you can tell I've had a transplant is to look in my bank account! I try to remember it's all been worth it---our retirement fund is gone, our savings next to nothing, but I'm still around to mourn the loss of all that stuff, so I'm appreciative of that!
I think your work for the Blood Bank, and educating others, sounds fulfilling. I do the same for the LLS, my husband and I are currently putting together an educational DVD for them, plus I do first connection. These things help us help others and give back a little, but they are also very cathartic for us, too. So I think it's great that you are doing that! Remind yourself how very important that work is, even if it isnt a paying job.
Do look into the long-term disability. I never did, so I'm clueless as to how to help there, but others here have done it and will gladly give you more info. With your extra health precautions due to the infections you've had, etc. I'm sure your doctors would agree you'd qualify. The hospital social workers are usually very helpful with that sort of thing, too.
I wish you well, Roger, and hope that the infections are a thing of the past for you! Please let us know how you are doing.
I'm sorry to hear that your immune system is taking so long. We all have melt downs at different points. In some ways, they can be theraputic. It sounds like you were able to get control again which is great. I just encourage you to be vigilant about your meds and care. I believe it's worth the fight.
I will just echo what others have said about applying for SSDI and looking into working from home. Some of those work-at-home deals are fishy but I would talk to a job counselor to see what they may be able to offer. I know of some community colleges around here that offer help with job searches and you typically only need to be a resident of that county to use them. You may want to look into that in your community.
I don't think you're concerned about bringing in an income from the financial end, at least not as much as you're concerned about not doing what you're supposed to be doing. Am I right? I mean, I've been there, too. The money's a bitch but not being able to do what we were brought up to do is a bitch.
I hear what you're saying about feeling, can I say "useless" or not being the man you're supposed to be? That crap still weighs me down sometimes and just kicks me in the ass. If I'm misreading you, I apologize and won't turn this into my own vent.
However, in the event I'm on the right path, let me address a couple of things. You mentioned your life is on pause. It depends on how you look at it. I come from the angle that life's what it is whether I like it or not. My life hasn't been on pause a minute. My life has been redefined and refocused for a period of time. I am living life even in this very strange and somewhat disappointing world I've found myself in. Whatever lies ahead is my life. Time to get an lead pipe and bludgeon my way through it.
My choice of CDs would've been David Lee Murphy instead of George. But we all need the medicine we need, ya know?
I'm most sorry that you seem to be finding all of this out now. It would seem more appropriate if they'd've gotten you ready for this going in. You need your vaccines, you need to get your immune system up, especially if you're a plumber. But, who knows, you might be on a new career path with the work you're doing. Many people in health care got there in response to disease. I once thought I might, but then thought better of it. Just not my calling.
Now, if I'm reading right, I need to clear something up for you. GVH is not an infection, in fact it's kind of the opposite of an infection. In a way it's about too much immune system. You might want to get your doc to go over that with you again.
But kudos to your doc. As WBF said, the emotional/mental side of this isn't usually addressed as directly as it should be. I think that your doc got you with a grief counselor was a great move. I hope the counseling helps.
I'm not aware of when you had your transplant but if you're just now getting your vaccinations, I figure it has been over a year? So I'm having a tough time figuring the timeline here. Sorry, I have chemo brain...another way life changes for some of us.
I hope you're feeling better today and will continue to get better each day.
I think Tex brings up some really good points. I can only answer as a spouse, but I will tell you there wasn't a minute of my husband's treatment when I thought he was a burden. I was so busy being thankful that he was alive and fighting, that money didn't cross my mind. We have always been able to pay our bills, we have cut down on a lot, but we are fine with that! Dan has been off of work for six months and I am a stay-at-home mom. We are thankful that Dan's job has a really good "sick leave" program and we had bought an income protector policy a few years ago. Of course nothing kicked in right away, but it all worked out. We have gone through a bit more of our savings than we had planned but sometimes that's what happens in life. He's scheduled to return to work in 1 1/2 weeks. We'll still be close to a month longer without a "real" paycheck.
Money aside, our family has made it our mission to pay things forward. We fundraise. We raise awareness. We give back. For us, it's a need. We are determined to turn this whole experience into a positive one. My husband (a pipefitter/sheet metal worker) has often thought that maybe one day he'll change careers. For now, we are just moving on...life today is a "new normal." We'll never have Dan's pre-leukemia days back. Our family will never be the same. We are OK with that now. We have today, and today will rock! We are prayerfully confident that each day will grow into a new day where Dan is healthier and stronger and our family is that much closer. We are thankful every day for that!!
We have gone through little spurts of sadness. I guess we kind of mourned for the way things were. I'm sure everyone does at some point. More times than not, we just celebrate all of the GREAT things we have been blessed with. We celebrate the good days...we celebrate that the bad days aren't worse!
Maybe my answer is a crappy one. Dan said from the begining that cancer would not define him and anyone that wanted to play along HAD to be positive and enjoy life! I chose life. Leukemia, for us, is just a bump in the road of life.
PS-change the CD!! George Strait on a happy day would make me wanna drive off a cliff Get you some drivin' rock, jammin' music...I'm more of a Red Hot Chili Peppers gal myself!**************************************************************************
Thank you all for your time and your comments
Thursday, July 1, 2010
Sitting in my truck in the parking lot my arms went numb from the shots. Than tears rolled down my eyes, I could not stop. I was screaming and punching the dashboard like a madman. My life has been put on pause. How much longer can this go on? I am the house guest you invited over for the weekend that's yet to leave. I am a grown man with intelligence and skills, I am not supposed to be a burden. I asked what would happen if I stop listening to his orders and quit the meds and resume my life. He said that he would not be able to see me. I asked why he said that the last infection I had in October put me in the hospital for 3 weeks. The next infection (Graft Versus Host Disease) would most likely take my life. Dying from the inside out. By the time I felt any pain or showed signs of sickness the infection would have taken control of my body by than there would be little that could be done to reverse it. That's when he brought in the counselor to explain the severity of the situation.
I am still trying to put all this in perspective. The tears stopped (a George Strait CD can be the best medicine sometimes) and now I need to come up with a game plan. I will continue my volunteer work with the Blood Bank, I am scheduled to work the blood drive in Willowbrook tomorrow. I opened my email to find that I have been asked to be the keynote speaker at a meeting for Andarko Petroleum to explain the importance of blood donors. That made me feel pretty good. I might not get paid but I will work at educating and sharing the effects of my disease with others. http://www.facebook.com/home.php?#!/group.php?gid=126178420738609 This is the link to a group page I started on Facebook. Please take a moment to look and maybe become a member. I was sharing information and will begin offering different books and literature on different forms of cancer as well as promoting blood drives. Read some of the entries and if you can, help me share it. There is a discussion section that I welcome people to use. I have amassed a wealth of knowledge over the last few years and obtained excellent information from the University of Texas Medical Library. There is no cost for any reading materials just let me know what you would like and I will mail it to you. If you have reading material that you are no longer using I will gladly take it off your hands. I can share it online as well as find a good home for it by donating it to the MDA library.
This keyboard and you have helped keep my sanity. Not long ago I would be somewhere with a big bottle of Jack Daniels and a cup of ice feeling sorry for myself. Drowning your sorrows doesn't work, I've tried. Those "sorrows" can swim, they will not drown, they keep floating back up, no matter how much Jack you feed them. And Jeiger Bombs just make you stupid. So I sit here and thank God that I am here. This has been a journey not one I would have chosen had I been given the opportunity but it is mine and I must make something productive of it.
Thank you for reading, I needed this.
Wednesday, June 30, 2010
That is from the November section of the 2010 Calendar/
Good morning all. hope the weather finds you ok and you are not in the path of Hurricane Alex. I was able to obtain some of the 2010 calendars that my sister and I appeared in. I am trying to raise some funds for our next blood drive. I hope to have food and goodies bags to give to the donors. If you can help in anyway it will be appreciated. You can also make a donation for the calendar and it will be mailed to you or held til the day of the event. We are trying to start a cancer/health library on our group page on face book http://www.facebook.com/?sk=2361831622#!/group.php?gid=126178420738609
Friday, June 25, 2010
As I believe our Volunteer Coordinator, has mentioned to you, we would like to invite you to become part of our Speakers’ Bureau.
Members of our Speakers’ Bureau work to raise awareness about the importance of blood donations by not only volunteering their time but also sharing their personal testimony with others. Our donor groups who host regular blood drives rely on the assistance of our Speakers’ Bureau volunteers to encourage their employees, patrons or members to donate during their regularly scheduled blood drive. While staff members can fill these requests, our message can only go so far. However, when individuals like you (someone who knows firsthand just how important it is to Commit for Life) share their story, potential donors can see just who their donation could be helping.
We believe you would be a great asset to the bureau and could help save even more lives. If you’re interested, please let us know and send us times of the day/week when you would be available to help in this capacity. Also, if you have a preference as to a specific part of town you would like to volunteer at, please let us know that as well.
Thank you, Roger.
We hope to hear from you soon!
Community Involvement Coordinator
I have seen and been through alot over the last two years. Although I have been the patient I seldom saw myself as a victim. I like to play poker and feel these are the cards I were dealt. It has not been a pretty hand and has often left me fatigued, nauseated and confused. In two months I have no idea where my life will be. It has been held in limbo as I continue to take doctor prescribed medications to fortify my immune system. Returning to normalcy will prove harder than expected, prolonged exposure to the sun effects me negatively. I do not know if this is a symptom of the drugs that will fade away once I discontinue them or if it will be a constant.
Lethargy and fatigue make my mind weary and when I see commercials for depression it seems to be describing me. I have never been emotional, other than joyous on a good poker hand or a Texans win. So to think I might be depressed is hard to fathom, but the warning signs are there. This may be a battle as tough as chemotherapy. I do not need nor want mind altering prescriptions, I simply want my life back. To walk with pride and not feel pity. To earn my own way and not rely upon generosity of others. To cook dinner in my kitchen, albeit a motel kitchenette for my daughter. When these simplicities of life return perhaps than I will be able to again walk with my head held high and walk with the dignity that cancer has stripped of me.
Sunday, June 20, 2010
I do not get to spend much time with my daughter, she is a young woman now and has a busy life so I tried to be well. My insides had a plan of there own. The bathroom was occupied so I ran outside, and it was not pretty. I had not been able to eat all day so it was mostly liquid. The rest of the day was spent in a fog. Feeling lightheaded I decided to call it a day and get some rest. I drink some water and the nausea came back with a vengeance. I barely made it to the toilet, before my mouth started spewing out fluids with gut wrenching force.
I am lying down, on my stomach afraid to fall asleep because I might have that feeling again and choke in my sleep. It is 3 days shorts of 15 months since my transplant. The medications still have side effects on me. I am so hungry but know what food would do to me at this time. I have been trying to get my life prepared for the day I can return to work. I am taking correspondence classes and spending more time volunteering with the Blood Bank, but a day like today knocks me back a few pegs.
How can I construct a million dollar project and supervise 20 men when I can not drink water without becoming so sick I find myself curled in a fetal position, sweating yet being so cold. Perhaps in the next month I will make the final turn to recovery. As has been the norm, each day is full of suprises and I pray for the best but am prepared for the worse. When am I going to be called a survivor? This hangs over and in me.
Wednesday, May 19, 2010
I was in the emergency room and my family was there, she was on her way to see me. She came and we talked. I went on to spend a few days each week in the hospital. We sent each other text messages. She called me twice. Never visited me in the hospital again. I lost my health, my job ($$$), and the girl in the span of a few days. I can not help but wonder if one was tied to the other. Yeah right! She is back in Midland and I am back on my feet. I made it through my ordeal with family, friends and prayers. I prayed as well, sometimes for her.
Tuesday, May 18, 2010
Tuesday, May 11, 2010
Facebook can be fun. If you are a member and go to your home page you can read your friends post. There is some funny sh*t on there. Whats bad is that most people are not trying to be funny. I can't believe they put some of the things out there for the world to see. My life has become an open book over the last couple of years, I have shared my experiences and it has helped some people but it helped me get through some dark times. There is something soothing about being able to speak about what scares you to a keyboard. Most entries you may have read are topics I might not ever be able to speak to someone face to face. My life has truly become a journey.
Bellaire cop just found "not guilty" of shooting a minority. Tsk, tsk..
This weekend was Mothers Day, got me to thinking...My mom birthed and gave life to me. My sister is my bone marrow donor, she gave life to me. So does that mean my sister would be "my other mother"? Things that make you say hmmm??
Wow, it's almost five o'clock and I am still awake. This blogging thing really is good for me. I want to stay up til nine and sleep through the night. So that means I have about four hours of Facebooking to do. See you there.
Sunday, May 9, 2010
I have been looking at the classifieds for positions in my field. They are there, I hope to stay near Houston. The last few years have helped build a bond between my family and I. My daughter is a young lady with a life of her own. I keep a cell phone that is mainly used to keep in contact with her. Just a brief hello or a texted "good morning" is enough to make my day. I have been fortunate enough to live at my cousins home. Three years ago was the birth of their daughter and seeing her grow up brings back memories, how fast time goes by. I wish I knew now back than, I could have been a better parent, father. Learn from mistakes, and that I did, I just wish it did not take four decades to attain the knowledge I want to share with her now. As time goes by I find myself sounding more and more like my parents. The worry alone keeps me awake. My folks raised three children, I know I gave them heartache and worry. Never purposely but now that I am a father the weekends scare me, will she be careful, will others be careful. It is tough being a parent. Thanks to my mother can never be enough, she gave life, raised and cared for me. I hope some of my mothers skills rub off on me. If you are reading this, Happy Mothers day, Mom.
Wednesday, May 5, 2010
Yesterday I did a load of laundry and was reminded of how long it has been since I had total independence. Of 14 pairs of underwear, I had not purchased a single one. Living weeks and months confined to a hospital room and pajamas I had liitle need for clothes. My mother visited and cared for me during this time. She always brought me things. Magazines, socks and underwear. That's alot of hospital stays. Thats a strange feeling, not being able to purchase your own underwear. Never thought of it til now. With limited resources buying my own boxers falls pretty low on my priority list.
Today I edged the yard, not a major task but I was in the sun and getting some cardio in. Feels good to sweat. The obstacle called sleep continues to emerge. My body is doing it but at the wrong times. I have begun replenishing my tool box. In the opening months of my illness I tried to keep up with my medical bills which quickly dried up what savings I had managed to build. So pawn shops became a major source of income as I saw one tool after the other go into hock until I could go back to work and get it out. I would have never guessed it would have been 25 months and counting until I am gainfully employed again.
Cancer can take many things from you besides your health. Dignity is soon lost as you find that you are now dependent on others for shelter, food, and living expenses. For an independent prideful person that may hurt worse than some chemotherapy treatments. It did & does for me. I work with my hands and find it embarassing when I meet someone new and shake hands. I am complimented on the softness of my palms. These are not mine, the hands I know are calloused, blistered, or cut. They should show signs of labor. The medications I am on state that I should avoid prolonged exposure to the sun. I tried to play a round of golf only to find the sun gave me headaches and nausea. One of the drawback of taking so many pills.
Summer is here and I hope my immune system is soon strong enough that I will no longer need so many medications and that my doctor feels it is safe for me to go back into workforce. I feel so strong at times and act like I did before, only to find that the next few days I will be cramping, sleeping, and fighting nausea.
There is a second chapter to my life that is beginning, consider this the prelogue. My life has been a journey with the most turbulent times being the last few years. I have survived in part by prayers and warm wishes from family, friends and new acquaintenaces. Hopefully that support continues and I can share some good chapters of my life.
I think you can subscribe to this blog and it will be emailed to you when it is updated. I hope you do, because I could not have made it this far without you.