Woke up Saturday with a 100.6 temp, and a lymph node in my thigh the size of a Walkman...(for you youngsters- that’s like two Ipods taped together –or maybe three.) The fever subsided- so there was not a need to visit Moffit for a stay at their bed and breakfast. Just put a cramp into my weekend. No big plans-just going to the gulf to read and a visit to our favorite restaurant for a late lunch.
I read most of the day Saturday- finished off the new Lee Child book... and Sunday, watched the TV news program until I got sufficiently angry, read.
The tough thing is that my lymph node is somewhat painful- so I take a viccoden to make it through. I am also unable to lay down- because I experience a burning sensation on my face when I am reclined... So I sit in my chair- sleep until 4-5AM, then I stumble into bed and then, I guess because I am semi conscious I am able to sleep...
I see Dr. Lancet - and do the IVIG tomorrow... so I am hoping for a suggestion or two.
God Bless
Monday, August 31, 2009
Friday, August 28, 2009
Ah, August...time to relax
The end of summer- the time to relax and prepare for the rush of fall schedules- timetables, and new government incentives...
Rest well weary noble officials...September will soon be here--- as well as November 2010.
Wednesday, August 26, 2009
Blog Surfing
Occasionally I will blog surf. I sign on to my blog, and then hit next blog- to see where I might go. Different stuff out there- and a lot seems to be in Spanish. But some really great photos.
Anyway, I wanted to post something to get the blast from the seventies off the screen- or top position...maybe a new image to ponder...or as we use to say in the newspaper business- to put the other photo beneath the fold...
More when I feel somewhat "creative"
God Bless
Tuesday, August 25, 2009
and the beat goes on...
Cindy my friend from OSU, as well as from Facebook, CLL Christian Friends, and CLL Forum wanted me to post this on Facebook- fortunately, I was unable to...so I thought I would drop it here...
Denise has barely changed... but I don't know who that chubby boy with the disturbing mustache is with her...
It's Back
Funny, last week I actually was feeling a little guilty with the SS Disability and all- something about the Irish work ethic...Lazy bum- get out there and do something...So to ease my conscious, my CLL and the symptoms of my skin irritability has returned with a vengeance.
I had spoken to Margaret at Dr. Byrd's office last week- she was checking on me- I told her all was well, and that I felt great. Then over the weekend it started, deja vu all over again. I cannot sleep at night in my bed- I have this feeling of “hives” on my face when I lay down- so I sleep in my chair- my ankles are swollen; the skin eruptions are back and I have the lymph node- I call it the mother node- in my thigh that is about 2 ½ inches long and hurts like heck when I am not popping pain pills.
I am waiting for a trial program to open at OSU- Cal 101- that may be a way to calm down my lymph nodes so I can try for a Bone Marrow Transplant again... I seem to have a form of CLL that does not respond well to the traditional methods of treatment.
I spoke this morning to the St James Resort staff (OSU James Cancer Center) -I like to think of them as my concierge- so they will decide if I should go back on the Dex or try something else... Dexamethosone- a Steroid that makes me feel "human", and sometimes a bit more. I was on it for about six months last year, but it can have some "harmful effects." See my previous post on "whack a Mole".
Sorry, if I sound like a whiner- but lack of sleep does that to me,or at least that is something I can blame. I know there are many people out there who suffer more severe CLL symptoms then me. So I will remain thankful for the fact that God does not give me more than I can handle—and if he does, he provides some “help” along the way...
Positive notes: The grand daughters are back in school again... that will give Denise some time to relax, and break up the day a bit... Last week, we took them to St Pete Beach for a couple days--- they are really great travelers. I really am glad they are here.
Waiting for the St James Team to call back..
God Bless,
I had spoken to Margaret at Dr. Byrd's office last week- she was checking on me- I told her all was well, and that I felt great. Then over the weekend it started, deja vu all over again. I cannot sleep at night in my bed- I have this feeling of “hives” on my face when I lay down- so I sleep in my chair- my ankles are swollen; the skin eruptions are back and I have the lymph node- I call it the mother node- in my thigh that is about 2 ½ inches long and hurts like heck when I am not popping pain pills.
I am waiting for a trial program to open at OSU- Cal 101- that may be a way to calm down my lymph nodes so I can try for a Bone Marrow Transplant again... I seem to have a form of CLL that does not respond well to the traditional methods of treatment.
I spoke this morning to the St James Resort staff (OSU James Cancer Center) -I like to think of them as my concierge- so they will decide if I should go back on the Dex or try something else... Dexamethosone- a Steroid that makes me feel "human", and sometimes a bit more. I was on it for about six months last year, but it can have some "harmful effects." See my previous post on "whack a Mole".
Sorry, if I sound like a whiner- but lack of sleep does that to me,or at least that is something I can blame. I know there are many people out there who suffer more severe CLL symptoms then me. So I will remain thankful for the fact that God does not give me more than I can handle—and if he does, he provides some “help” along the way...
Positive notes: The grand daughters are back in school again... that will give Denise some time to relax, and break up the day a bit... Last week, we took them to St Pete Beach for a couple days--- they are really great travelers. I really am glad they are here.
Waiting for the St James Team to call back..
God Bless,
Monday, August 17, 2009
Forgiveness
We are by nature not very forgiving. Especially me... I have been known as a judgmental SOB for decades now. But in my daily prayers, I am asking for a "softer" heart. All things are possible through Him.
I think what Michael Vick did was deplorable- I cringe whenever I hear of any animals being intentionally mistreated. I will not address all the other things that are reported in the news that make me cringe- but stay on this topic. Animal cruelty displays a person’s mental and/or emotional defects’
Uncle Charlie might say “That young man’s “head and heart” lights don’t shine very bright...”
The Michael Vick issue has been rumbling around the blogs, face book, sports and talk radio. Many feel that he (Vick) should have had a stiffer sentence that he should have not been allowed back into the NFL. For me, I will wait and see by his actions if he is repentant. Having Tony Dungy in his corner is a good sign.
This all reminds me of what my Pastor back in Vermont use to say----“Good thing I am not God, there would be a lot of striking down going on...”
God is very forgiving (thankfully). I am working on that as well.
God Bless
I think what Michael Vick did was deplorable- I cringe whenever I hear of any animals being intentionally mistreated. I will not address all the other things that are reported in the news that make me cringe- but stay on this topic. Animal cruelty displays a person’s mental and/or emotional defects’
Uncle Charlie might say “That young man’s “head and heart” lights don’t shine very bright...”
The Michael Vick issue has been rumbling around the blogs, face book, sports and talk radio. Many feel that he (Vick) should have had a stiffer sentence that he should have not been allowed back into the NFL. For me, I will wait and see by his actions if he is repentant. Having Tony Dungy in his corner is a good sign.
This all reminds me of what my Pastor back in Vermont use to say----“Good thing I am not God, there would be a lot of striking down going on...”
God is very forgiving (thankfully). I am working on that as well.
God Bless
Tuesday, August 11, 2009
Randy’s Civic Adventure
I bounced out of bed this morning with purpose, with anticipation of my meeting with Senator Bill Nelson. (Okay, I figured I would see a staff person- not the man himself-but one can dream) The Obama Community Organizers (Mitch Stewart) mislabeled me as a left minded person to “organize” with a scheduled meeting with the democratic senator who represents Florida. Possibly to help ease his (Senator Nelson’s) mind that he should follow the party line on the volatile issue that has polarized the nation. They emailed me the talking points -and a quick click to arrange the meeting. I am, without a doubt, perplexed by the error- as I am with the direction of the Health Care Reform that seems to be stream rolling from the white house. I want to be fair- I want to understand. But I am a conservative. I want to slow this down before we start doing something “stupid”. But I accepted the opportunity. Heck, Senator Nelson did raise his hand to represent me as well.
Braving the rush hour Tampa traffic, I arrived downtown silently cursing my GPS (Dora the Explorer) for not being updated-there’s a lot of new construction that caused me to twist and turn about. After parking on the street- adding an hour to a meter with 45 minutes) I had an initial false start (according to the Marshall’s you cannot bring a cell phone or GPS into a federal building) Returning my cell phone to the mustang- I entered the surprisingly tranquil cool building- I made my way to the Senator’s offices. No news crews, no angry throngs of well-appointed country club type Nazi’s (thank you Speaker Pelosi).... just a young woman who apparently had been left alone to fend off the wild crowds. At that moment, that would have been just me.
Apparently Senator Nelson was out of the country on a Senate Intelligence Committee Meeting... I found out later that no one at his office was privy to the secretive location- especially the lone young lady at the reception desk, Melissa. Actually, because she was the only person there it IS possible that some valued staffers somewhere in Florida know his whereabouts. But I guess they were all on holiday -acknowledged Gil McCormack sarcastic term- while the Senator slaved away in search of intelligence.
There is no truth to the rumor that Senator Bill Nelson was protecting us as a member of the Senate Intelligence Committee in meetings held at Lake Como, along side Brad and Angelina, or George Clooney’s summer homes. I am sure that Continental Airlines was the carrier of choice for this committee- not some decked out G-5 (aka out of touch auto executive style).
So, I was handed a form to fill out, (compliments of Obama.com) so the Senator could read in my own words my very important thoughts and concerns on this pressing issue- and vote accordingly. I could, Melissa suggested somewhat anxiously, fax it back if I preferred. Being retired and in a cool comfortable place, I declined and decided to sit there and compose my numerous random impulses into some legible format. While there I did see three other people arrive, to encourage Bill to fight the evil conservative rats that have dared to speak their mind.
I listened to a couple –a Doctor and his wife, who felt that they should actually verbalize their message to poor strickened Melissa at the desk- surely when Bill returns Melissa would recount their words in a private meeting with Senator Bill-with the verbal passion they displayed. I wrote on the form that Melissa needed a raise. Pro Obama health care. They mentioned how hard it was for their son- who they had to put on their business healthcare plan as a “part-time” employee so he could buy affordable health care- it was not available to him as a free lancer. I thought briefly about the choices we make with our career and all- the sacrifices, and I thought just a little bit about insurance fraud. Mentioning tort reform, the doctor suggested that malpractice insurance was not an issue. I wondered if he was available for a spine alignment- making a rash judgment call, as I am prone to do...
The other was a man who waited patiently to speak to Melissa as well.
I completed my form and passed it to Melissa while the three guest stood there and radiated positive energy into the room. Notifying the Marshall on my exit that I caused no disruption- they could stand down. He smiled.
One hour and seventeen minutes on the meter.
I will let you know what I hear from Senator Bill when he returns. Last response to my fax on the stimulas was a note on what he was doing for the light houses of Florida.
Hope his search for intelligence is successful.
Tomorrow the beach.
God Bless.
Braving the rush hour Tampa traffic, I arrived downtown silently cursing my GPS (Dora the Explorer) for not being updated-there’s a lot of new construction that caused me to twist and turn about. After parking on the street- adding an hour to a meter with 45 minutes) I had an initial false start (according to the Marshall’s you cannot bring a cell phone or GPS into a federal building) Returning my cell phone to the mustang- I entered the surprisingly tranquil cool building- I made my way to the Senator’s offices. No news crews, no angry throngs of well-appointed country club type Nazi’s (thank you Speaker Pelosi).... just a young woman who apparently had been left alone to fend off the wild crowds. At that moment, that would have been just me.
Apparently Senator Nelson was out of the country on a Senate Intelligence Committee Meeting... I found out later that no one at his office was privy to the secretive location- especially the lone young lady at the reception desk, Melissa. Actually, because she was the only person there it IS possible that some valued staffers somewhere in Florida know his whereabouts. But I guess they were all on holiday -acknowledged Gil McCormack sarcastic term- while the Senator slaved away in search of intelligence.
There is no truth to the rumor that Senator Bill Nelson was protecting us as a member of the Senate Intelligence Committee in meetings held at Lake Como, along side Brad and Angelina, or George Clooney’s summer homes. I am sure that Continental Airlines was the carrier of choice for this committee- not some decked out G-5 (aka out of touch auto executive style).
So, I was handed a form to fill out, (compliments of Obama.com) so the Senator could read in my own words my very important thoughts and concerns on this pressing issue- and vote accordingly. I could, Melissa suggested somewhat anxiously, fax it back if I preferred. Being retired and in a cool comfortable place, I declined and decided to sit there and compose my numerous random impulses into some legible format. While there I did see three other people arrive, to encourage Bill to fight the evil conservative rats that have dared to speak their mind.
I listened to a couple –a Doctor and his wife, who felt that they should actually verbalize their message to poor strickened Melissa at the desk- surely when Bill returns Melissa would recount their words in a private meeting with Senator Bill-with the verbal passion they displayed. I wrote on the form that Melissa needed a raise. Pro Obama health care. They mentioned how hard it was for their son- who they had to put on their business healthcare plan as a “part-time” employee so he could buy affordable health care- it was not available to him as a free lancer. I thought briefly about the choices we make with our career and all- the sacrifices, and I thought just a little bit about insurance fraud. Mentioning tort reform, the doctor suggested that malpractice insurance was not an issue. I wondered if he was available for a spine alignment- making a rash judgment call, as I am prone to do...
The other was a man who waited patiently to speak to Melissa as well.
I completed my form and passed it to Melissa while the three guest stood there and radiated positive energy into the room. Notifying the Marshall on my exit that I caused no disruption- they could stand down. He smiled.
One hour and seventeen minutes on the meter.
I will let you know what I hear from Senator Bill when he returns. Last response to my fax on the stimulas was a note on what he was doing for the light houses of Florida.
Hope his search for intelligence is successful.
Tomorrow the beach.
God Bless.
Monday, August 10, 2009
Back to the Beach
Denise and I are back from Sanibel Island. We had some wonderful food, plenty of sunshine, just a relaxing time of it... so we decided to do it again- on a smaller more hectic kid scale. We are loading up the grand kids-Heavyn and Neece, and heading off to Treasure Island on Wednesday for a couple of nights at a kid friendly beach hotel. Trading in the wine and escargot for kool aid and ho hoes...but we will have the grand kids.
Not much to report from the St James Resort people (James Cancer Center at OSU). I did receive a return call today from Doris- I was scheduled to see the transplant Doc next week, but since we have not started any treatment- I let them know not to expect me. It has been a bit frustrating waiting for other people to jump into action here. I know the “trial” is being administered by the pharmaceutical company, and that according to Doris (Dr. Byrd’s assistant) when I make my frequent calls- everyone is put in the loop. Good to hear, because as I told her- I have not heard jack. In fact, since I have not spoken to anyone with an advanced degree from Ohio in so long; I am starting to get withdrawals.
So being the control freak that I am, I told her that since nothing is going to happen until at least September- let’s just do six months of chemo treatments before we jump into the Bone Marrow Transplant commitment. I can fly up to Columbus, spend a couple of days doing the chemo chair thing, and then get back to Florida where the temperature will be moderate. With any luck I can put off a relocation to the frozen tundra of Columbus until March or April- when I will have to spend at least three months. I mean, Florida or Ohio in the winter months- whatta think? There does not seem to be any sense on urgency right now- my skin is cleared up (maybe the salt water), I feel OK, steroids have me hitting like A-ROD(just kidding), so maybe we ought to slow this tap dance down a tad. I informed Doris that I was ready to pack and move to Columbus in early summer- but again since there has been no real sense of urgency (or contact) from the OSU team, what the heck- slow baby slow. Maybe I am being a bit cranky?
Speaking of cranky.
Tomorrow I go to US Senator Bill Nelson’s office in Tampa to discuss health care. I got an email from the Obama team asking me to go, I responded to the quick links, and they set it up. Hmmm. I did acknowledge him (Obama) as my president, and somehow I wound up on the mailing list. I am an American. Senator Nelson does represent the people of Florida- where I reside. I do believe that once elected patrician politics should be set aside- and yes, if I put a tooth under my pillow, I will see a saw buck in the morning. But I hardly think I qualify for the Team Obama picnic. Not going to mention any attempts to organize here. I am just going to go and explain that I think we need to make sure we don’t jump too hastily into the same type of quagmire like we did with the bailouts. One morning in September I woke and was told by the big loud talking heads that unless we gave billions (or was it trillions) of dollars to the banks and financial systems that were too big to fail- I would be selling pencils on the street corner. The banks got the money (and no, there are no Ticonderoga #2’s in my hand so far)- but I see the banks looking healthier- but the mortgages and lending sure did not do any somersaults.
I realize that I will more than likely be speaking to some overworked staff member- but I think it important to go.
I will be respectful. I will be respectful. I will be respectful. I will be respectful. I will be respectful. I will be respectful. I will be respectful. I will be respectful. I will be respectful. I will be respectful. I will be respectful. I will be respectful. Actually, I will be respectful. But I will also make sure my opinion is at least heard- respectfully. I will not utilize the talking points from Mitch Stewart- the Obama political operative that encouraged me to “speak up for health care.” I think there are some personal responsibilities that should be addressed-like if you have a plasma television and no health care- you made the wrong choice. Catastrophic illnesses can strike anyone- I think we need to be a benevolent government to assist those people, but as for those that we in the south they say, “Bless their hearts, they just don’t have enough sense to get in from the rain...” maybe a little less.
I am all for a hand up- not a hand out.
Anyway, time to go to bed and get back to my Jason Bourne book. I don’t seem to get much reading done at the beach- staring aimlessly at the surf and horizon.
One last bit of housekeeping. I need to admit a plagiarised transgression here: The Blog sub title, “Perfuming the Pig” has been lifted from the verbal artillery of my good friend and role model Gil McCormack of Rutland Vermont. One day, I hope to be like him when I grow up. Until then I will just steal his good lines. He does continue to amuse me.
Sorry Gilbert, forgive me for my trespass.
God Bless,
Not much to report from the St James Resort people (James Cancer Center at OSU). I did receive a return call today from Doris- I was scheduled to see the transplant Doc next week, but since we have not started any treatment- I let them know not to expect me. It has been a bit frustrating waiting for other people to jump into action here. I know the “trial” is being administered by the pharmaceutical company, and that according to Doris (Dr. Byrd’s assistant) when I make my frequent calls- everyone is put in the loop. Good to hear, because as I told her- I have not heard jack. In fact, since I have not spoken to anyone with an advanced degree from Ohio in so long; I am starting to get withdrawals.
So being the control freak that I am, I told her that since nothing is going to happen until at least September- let’s just do six months of chemo treatments before we jump into the Bone Marrow Transplant commitment. I can fly up to Columbus, spend a couple of days doing the chemo chair thing, and then get back to Florida where the temperature will be moderate. With any luck I can put off a relocation to the frozen tundra of Columbus until March or April- when I will have to spend at least three months. I mean, Florida or Ohio in the winter months- whatta think? There does not seem to be any sense on urgency right now- my skin is cleared up (maybe the salt water), I feel OK, steroids have me hitting like A-ROD(just kidding), so maybe we ought to slow this tap dance down a tad. I informed Doris that I was ready to pack and move to Columbus in early summer- but again since there has been no real sense of urgency (or contact) from the OSU team, what the heck- slow baby slow. Maybe I am being a bit cranky?
Speaking of cranky.
Tomorrow I go to US Senator Bill Nelson’s office in Tampa to discuss health care. I got an email from the Obama team asking me to go, I responded to the quick links, and they set it up. Hmmm. I did acknowledge him (Obama) as my president, and somehow I wound up on the mailing list. I am an American. Senator Nelson does represent the people of Florida- where I reside. I do believe that once elected patrician politics should be set aside- and yes, if I put a tooth under my pillow, I will see a saw buck in the morning. But I hardly think I qualify for the Team Obama picnic. Not going to mention any attempts to organize here. I am just going to go and explain that I think we need to make sure we don’t jump too hastily into the same type of quagmire like we did with the bailouts. One morning in September I woke and was told by the big loud talking heads that unless we gave billions (or was it trillions) of dollars to the banks and financial systems that were too big to fail- I would be selling pencils on the street corner. The banks got the money (and no, there are no Ticonderoga #2’s in my hand so far)- but I see the banks looking healthier- but the mortgages and lending sure did not do any somersaults.
I realize that I will more than likely be speaking to some overworked staff member- but I think it important to go.
I will be respectful. I will be respectful. I will be respectful. I will be respectful. I will be respectful. I will be respectful. I will be respectful. I will be respectful. I will be respectful. I will be respectful. I will be respectful. I will be respectful. Actually, I will be respectful. But I will also make sure my opinion is at least heard- respectfully. I will not utilize the talking points from Mitch Stewart- the Obama political operative that encouraged me to “speak up for health care.” I think there are some personal responsibilities that should be addressed-like if you have a plasma television and no health care- you made the wrong choice. Catastrophic illnesses can strike anyone- I think we need to be a benevolent government to assist those people, but as for those that we in the south they say, “Bless their hearts, they just don’t have enough sense to get in from the rain...” maybe a little less.
I am all for a hand up- not a hand out.
Anyway, time to go to bed and get back to my Jason Bourne book. I don’t seem to get much reading done at the beach- staring aimlessly at the surf and horizon.
One last bit of housekeeping. I need to admit a plagiarised transgression here: The Blog sub title, “Perfuming the Pig” has been lifted from the verbal artillery of my good friend and role model Gil McCormack of Rutland Vermont. One day, I hope to be like him when I grow up. Until then I will just steal his good lines. He does continue to amuse me.
Sorry Gilbert, forgive me for my trespass.
God Bless,
Thursday, August 6, 2009
Off to Sanibel Island
Denise and I are sneaking out for a couple of days, going to Sanibel Island to read near the water, sit on the beach, and dine out while we take advantage of some off-season rates. . Sanibel is a relaxing place that reminds me of a much more sedate Key West. No Duval crawl- just breathtaking (and better than Key West) beaches. We will be on the gulf a few steps to the beach. It has been awhile since we have done this- taken some time for R&R...and oddly enough, being recently retired- I am looking forward to the escape. New “Jason Bourne” book in hand, as well as 50+ sun block, and a tank full in the mustang -we will be off. Just as soon as I pack.
The other grandma is coming to Florida from Vermont, so our grandchildren will be with her, giving Denise a break. Denise spends a lot of time with them, going to the zoo, beach, play grounds...as well as conducting Grandma’s summer school. She does get a bit spent by the end of the week. I try to give her some breaks, but as usual she steams on. She is looking forward to some lounging time and a few good meals out. My buddy Doug Evans has suggested a couple of places, and he has yet to let me down.
Yesterday, I had an IVIG infusion at Moffit, and caught up on my guilty pleasure of “Rescue Me” season one DVD 2. IVIG is when they combine 100 pints of blood and remove the “good stuff.” The goal is to improve my immune system. I have been doing this for five months or so...and thankfully my insurance covers it, approximately 10K per treatment. I will say that the numerous fevers and hospitalizations I had before this has subsided. Maybe that offsets the cost?
I still have no word on the St James Resort at OSU Cal 101 trial, although my local Moffit Hem Doc Lancet has suggested I look at a trial MD Anderson has been conducting called OFAR. It would be “off trial” at Moffit, if I wanted to proceed. I won’t go into the details of the treatment or results- but my sounding board is retired Physician Terry Hamblin in the UK, a no bones about it CLL specialist and devout Christian. He I trust for the straight scoop. I am fortunate to get his input. He has suggested that the Cal 101 trial with a 50% PR and little if any toxicity is a no brainer over the more toxic OFAR. Ok. Sounds good to me, although I was hoping to have my treatments closer to home...but if I need to go to Columbus, ok. So I wait for word.
Over all I am feeling pretty good- on day four of my Steroid pulse... all seems to be going well. The skin issue still has me shopping for good band-aid sales... Testing some Walgreen brands- so far so good, at .05 each... being retired and a cheap son of a gun gives me “shopping purpose these days...” My legs are not so bad as to scare small children off the streets if I wear shorts.
Other than that- that’s my ramble for today...
God Bless,
The other grandma is coming to Florida from Vermont, so our grandchildren will be with her, giving Denise a break. Denise spends a lot of time with them, going to the zoo, beach, play grounds...as well as conducting Grandma’s summer school. She does get a bit spent by the end of the week. I try to give her some breaks, but as usual she steams on. She is looking forward to some lounging time and a few good meals out. My buddy Doug Evans has suggested a couple of places, and he has yet to let me down.
Yesterday, I had an IVIG infusion at Moffit, and caught up on my guilty pleasure of “Rescue Me” season one DVD 2. IVIG is when they combine 100 pints of blood and remove the “good stuff.” The goal is to improve my immune system. I have been doing this for five months or so...and thankfully my insurance covers it, approximately 10K per treatment. I will say that the numerous fevers and hospitalizations I had before this has subsided. Maybe that offsets the cost?
I still have no word on the St James Resort at OSU Cal 101 trial, although my local Moffit Hem Doc Lancet has suggested I look at a trial MD Anderson has been conducting called OFAR. It would be “off trial” at Moffit, if I wanted to proceed. I won’t go into the details of the treatment or results- but my sounding board is retired Physician Terry Hamblin in the UK, a no bones about it CLL specialist and devout Christian. He I trust for the straight scoop. I am fortunate to get his input. He has suggested that the Cal 101 trial with a 50% PR and little if any toxicity is a no brainer over the more toxic OFAR. Ok. Sounds good to me, although I was hoping to have my treatments closer to home...but if I need to go to Columbus, ok. So I wait for word.
Over all I am feeling pretty good- on day four of my Steroid pulse... all seems to be going well. The skin issue still has me shopping for good band-aid sales... Testing some Walgreen brands- so far so good, at .05 each... being retired and a cheap son of a gun gives me “shopping purpose these days...” My legs are not so bad as to scare small children off the streets if I wear shorts.
Other than that- that’s my ramble for today...
God Bless,
Monday, August 3, 2009
Out of the Closet
I saw a Chris Wallace interview yesterday on Fox with Debbie Wasserman Schultz, a Representative from southern Florida -she discovered a lump in her breast through a self exam, two months after her first mammogram at age 40. Though the cancer was detected at an early stage, she also learned that as an Ashkenazi Jew, she was at a greater risk of having the cancer recur in healthy breast tissue, prompting her to have both breasts removed. She was also at increased risk of ovarian cancer and had her ovaries removed -- the day after Election Day. Her final surgery was in December -- almost a year to the date of her diagnosis."
``I'm a very focused, methodical person, and I wasn't going to let this beat me. I wasn't going to let it interfere with my life.'' stated Wasserman Schultz.
She successfully hid this from the press and colleagues in Washington while undergoing seven surgeries. she came out of the Cancer Closet to highlight the need for self examination- to encourage women to be proactive in their health.
She did not want to let this “define” her...
I can understand that. I can respect that Heck- I am all about that.
I suspect Wasserman Schultz- a liberal and I do not agree upon many things politically- but being in control- not allowing this “beast” to define you- living your life freely -her handling of that makes her a hero to me.
With my diagnosis of CLL- it seems everything is now related to the ailment- at least as far as I am concerned. I had a fellow blogger write about an injury- some scrapes and cuts that caused concern due to his weakened immunity. I understand. He is the same age as me, and without this “beast” we battle, the incident would have been little more than an amusing self deprecating anecdote. CLL adds an element of dark substance to our lives. When I start to get a cold, I can see the panic in my wife’s eyes. My sister, whom I love dearly, seems to almost want to check my pulse when she sees me these days –over five years now-this illness changes things.
When I first told my work, an automotive magazine publishing company (Hot Rod Automobile, Muscle Car Review, etc...) I told the guy who recruited me to the company-he is pretty senior with the company. Combating the fear that one has with catastrophic illnesses and the workplace-fostered by bad television and stereotypes, I decided I needed to be up front with those in control. By utilizing faith, prayer and putting one foot in front of the other, I dove in. He listened, asked some thoughtful questions, expressed his support, and he walked me into HR. In his US Marine voice he said- “Randy has something to tell you... we do everything we can.” He turned and left us alone. In reality, the company was fine. I had no “TV Movie” bad experiences- no sliding me out on a technically. I feel fortunate.
Initially, I was selective whom I told at work. I did not want anything to change- I wanted to maintain my “sameness” in this time of chaos. I was actually able to work through the chemo- when I had treatment in Florida, I would come to the office afterwards, and many times while in the chemo chair in Florida, New Hampshire or Ohio, I had cell phone and internet services. I would conduct business with the stuff running through me.
Of course eventually word got out.Someone had one more cocktail- confided confidentially, and as I sat on the tarmac at the Phoenix Sky Harbor airport after attending a Barrett-Jackson Auction, two leaders in the industry called me to express their concern and offer their support. The cabin door closed- and I had three and a half hours to digest the information(Thank you Lord). I composed an email assuring them I was fine- that I appreciated their concern- I wanted to maintain a normal existence.
Two months later, I was the subject of a discussion point for a trade meeting.
I came out of the closet after that- full disclosure, to everyone in my email address book. Nothing held back. I wanted to get out in front of the rumors and fear associated with “cancer”. It was interesting the reaction from some people, some responded much better than I anticipated- and of course some did not. But that is the way it is.
I wish I could live without the specter of CLL. I wish I could decide to take a cruise to Ohio, without others having concern about me. But at this point I can’t.
At work, I did have a bit of over protection, but how do you really fault that? I pretty much stayed in the same position for five years. But that was ok. Other than my occasional ego shots, it really was a stabilizing period in my life. It allowed me to focus on my treatments. But I also like to think that I was able to pull my own weight- bringing new opportunity, maintaining and creating new ventures. When I made the decision to “pull the plug,” it was time. I also had been ranked pretty well among my peers in revenue- so I was not (in my opinion) leaving on a down spot-other than a rotten economy. I was becoming less effective, in my opinion. The fatigue was kicking me. I was not operating at 100%. The Doctors were given me some time frames as well, and I felt it was time for a new chapter in my life.
I am out of the CLL Closet.
Time for some changes.
``I'm a very focused, methodical person, and I wasn't going to let this beat me. I wasn't going to let it interfere with my life.'' stated Wasserman Schultz.
She successfully hid this from the press and colleagues in Washington while undergoing seven surgeries. she came out of the Cancer Closet to highlight the need for self examination- to encourage women to be proactive in their health.
She did not want to let this “define” her...
I can understand that. I can respect that Heck- I am all about that.
I suspect Wasserman Schultz- a liberal and I do not agree upon many things politically- but being in control- not allowing this “beast” to define you- living your life freely -her handling of that makes her a hero to me.
With my diagnosis of CLL- it seems everything is now related to the ailment- at least as far as I am concerned. I had a fellow blogger write about an injury- some scrapes and cuts that caused concern due to his weakened immunity. I understand. He is the same age as me, and without this “beast” we battle, the incident would have been little more than an amusing self deprecating anecdote. CLL adds an element of dark substance to our lives. When I start to get a cold, I can see the panic in my wife’s eyes. My sister, whom I love dearly, seems to almost want to check my pulse when she sees me these days –over five years now-this illness changes things.
When I first told my work, an automotive magazine publishing company (Hot Rod Automobile, Muscle Car Review, etc...) I told the guy who recruited me to the company-he is pretty senior with the company. Combating the fear that one has with catastrophic illnesses and the workplace-fostered by bad television and stereotypes, I decided I needed to be up front with those in control. By utilizing faith, prayer and putting one foot in front of the other, I dove in. He listened, asked some thoughtful questions, expressed his support, and he walked me into HR. In his US Marine voice he said- “Randy has something to tell you... we do everything we can.” He turned and left us alone. In reality, the company was fine. I had no “TV Movie” bad experiences- no sliding me out on a technically. I feel fortunate.
Initially, I was selective whom I told at work. I did not want anything to change- I wanted to maintain my “sameness” in this time of chaos. I was actually able to work through the chemo- when I had treatment in Florida, I would come to the office afterwards, and many times while in the chemo chair in Florida, New Hampshire or Ohio, I had cell phone and internet services. I would conduct business with the stuff running through me.
Of course eventually word got out.Someone had one more cocktail- confided confidentially, and as I sat on the tarmac at the Phoenix Sky Harbor airport after attending a Barrett-Jackson Auction, two leaders in the industry called me to express their concern and offer their support. The cabin door closed- and I had three and a half hours to digest the information(Thank you Lord). I composed an email assuring them I was fine- that I appreciated their concern- I wanted to maintain a normal existence.
Two months later, I was the subject of a discussion point for a trade meeting.
I came out of the closet after that- full disclosure, to everyone in my email address book. Nothing held back. I wanted to get out in front of the rumors and fear associated with “cancer”. It was interesting the reaction from some people, some responded much better than I anticipated- and of course some did not. But that is the way it is.
I wish I could live without the specter of CLL. I wish I could decide to take a cruise to Ohio, without others having concern about me. But at this point I can’t.
At work, I did have a bit of over protection, but how do you really fault that? I pretty much stayed in the same position for five years. But that was ok. Other than my occasional ego shots, it really was a stabilizing period in my life. It allowed me to focus on my treatments. But I also like to think that I was able to pull my own weight- bringing new opportunity, maintaining and creating new ventures. When I made the decision to “pull the plug,” it was time. I also had been ranked pretty well among my peers in revenue- so I was not (in my opinion) leaving on a down spot-other than a rotten economy. I was becoming less effective, in my opinion. The fatigue was kicking me. I was not operating at 100%. The Doctors were given me some time frames as well, and I felt it was time for a new chapter in my life.
I am out of the CLL Closet.
Time for some changes.
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