Ward of the State

The Eagle has landed... Social Security has deemed me appropriate to receive a monthly disability check... I kind of wished they had resisted a bit- put up some mock objections...but what the heck, I am now officially retired. The law firm that called to “assist me”... has barely received my signed paperwork. I expected some "gnashing of teeth...some indignant comments...not a quick acceptance.

Actually, I feel like I am tap dancing on ice here... Waiting for the call from Ohio State accepting me into the trial chemo program... bouncing on and off steroids... skin erupting, then calming down... totally out of control. Once they call, (The Ohio State James Cancer Center- or as I refer to them as – The St James Resort) I can hop in the car and head north... until then, everything is on hold.

I called Moffit (my local cancer center) to find out if I am scheduled for anything...Dr Byrd from OSU leads the parade- but Moffit has a habit of scheduling me for appointments without letting me know... Moffitt has some great Doctors... but as for quality of customer service--- well I guess I have officially lowered my expectations... They may be getting the jump on practicing Obama care...sort of like a free clinic environment at times...

Last week I was called in for a Pulmonary appointment... I questioned it, lightly- then figured, what the heck... CLL patients have pulmonary issues- maybe they are just crossing their t's and dotting their i's. Nope... Should not have been scheduled... no need... normally I would go ballistic--- but hey- it broke up the day.

Just trying to get some sort of pattern together on a daily basis... Not going into the office, taking business trips, well- you need to make some adjustments. The energy level is really the determing factor... Somedays I am ready to rock and roll- others, I am just stumbling about.

I spent the last several days with my sister from Pennsylvania, Just hanging out, eating, laughing... a good time. Trying to get her and her husband to spend more time down here in the winter... we’ll see.

I have a list of things to do...buy some grass feed and seed, tail light for the PT Cruiser, wiper blades, etc... My son has a birthday coming up- so I may go buy something he can exchange... (no illusions here...)I will wind up spending some quiet time reading...praying- clearing the head.

Of course being home has some advantages- my granddaughter Neese just came in to show me a worm she found- she named it “Wormy Sabrina” and she will keep it for an entire year... she wants to wash it...

I better go check on that...

God Bless,

Whack a Mole

You know that computer game where you use your mouse (as a hammer) and try to whack the head of a mole as it pops up from one burrow hole to another...but the thing is relentless- on and on it pops up... and you keep trying to whack it back down.

That’s what I feel this cancer thing is like...CLL, Bladder, Kidney...all my cancers that crop up and cause unrest and concern. What caused them? Maybe smoking in my youth caused the bladder cancer, BCG- as a very caustic chemo for the Bladder (knocking my immune system out of whack) may have kick started the CLL, Cytoxan to keep the CLL in check- may be the culprit that caused the removal of my right cancerous kidney, and Dexamethosone- giving me energy while knocking down my lymp nodes is my suspected cause in my frequent bladder cancer tumor recurrence...The dexamthasome seems to “rough” up my bladder... kicking my superficial bladder cancer into gear. Tumors begin to grow- and I have had four transurethral bladder cancer surgeries since last November to keep it in check- taking it a full circle.

This is the first day of being off the steroids---I have energy- spent a great day out and about- and now I suspect tumors are growing once more in my bladder...

That happened before when I was on the roids... prior to making numerous BMW payments for my Urologist. It has been superficial- and as an out patient-but a pain to deal with no matter what.

Dr Byrd seems to think the bladder cancer is secondary... and truthfully I guess it is...The CLL takes priority... It is just a pain.

It is just a bit tiresome to deal with the cause and effect suspicions...and the whack a mole mentality of dealing with cancer...


The battle continues...day by day.

God Bless,

3:30 AM Roid Ramblings...

Ming the wonder dog and I are up and in the computer room/Guest room. Denise had built a Murphy bed in here, so when it is unoccupied- the bed is hidden in the wall. Ming (our 17 year old Shih Tzu) has a bed in here as well and he seems to spend a lot of time sleeping in it these days... He often gets up late at night and follows me to whatever room I wander to...His age concerns me--- He is still moving around well but has an occasional back hump associated with kidney failure. He does not seem to be in any pain, and while his jumping on the couch is sometimes “miscalculated” and he slams into the front of the cushion- I am not yet to make a “quality of life” call on him yet.

Me, I am bouncing off my steroids- since the Ambien CR has worn off...Snoozed off around 10PM- up 5 hours later. I finished my book (Robert Parker -Jesse Stone series...) and have the newest Baldacci book to get into...

It was hot today...big flash from Florida. I had to wash the mustang in shifts- big priority was cleaning the convertible top with a careful bleach mixture to remove the algae that accompanies the intolerable humidity here in the summer heat... It is getting a bit worn... frayed on some of the seams-so it might need to be replaced soon...

I scrubbed the roof, went in and cooled off- washed the body and shammed it- (not Sham WOW) went in to cool off... cleaned the inside, went inside...cooled off, and did the windows... I started at 8AM... finished around 10:30. I love a clean car... really dislike heat stroke.

I am looking for something to do tomorrow--- something to entertain Denise with- since I have been pretty much a lump for the last month or so....This CLL and the fatigue really takes the wind out of your sails... Maybe we can go to the beach- eat some Grouper at out favorite biker bar (CFO’s during the week- Bad boy Harley bikers on the weekend), take another cruise in the mustang- top down, air conditioning blasting.

The girls’ other grandma is coming early next month for a couple of days- so we might sneak off to Marco Island, or Savannah for a few adult days...maybe to Key West. We use to go to Key West pretty often when we were in Vermont... Now it seems like it is too expensive to fly from here (Tampa), and too far to drive. We do not do the massive Duval Crawl- but our system is to go to a beach in the AM- lunch in town, go to another beach in the PM, see the sunset, have a great dinner, and do it again the next day- maybe even see the sun come up. I try to get a half day deep sea fishing and we have a off site 55 foot cataman that we take out with very few other passengers. In the past, being the cheapest man in America, on day one I would go to Kmart- buy a Styrofoam cooler and a couple of beach chairs...donating them to a worthwhile looking young couple on our last day...

It is a very relaxing place...it can make you slow down. The first time I went, I met my family there after a hectic business trip with a petulent Artist who my publishing house represented- He was insistent upon ailenating all possible revenue resources I had established... WE were in the keys prior to my nephew's wedding in DC. We landed, and I was Mr A personality- looking for the Margarittaville waitresses to deliver my burger in some reasonable time frame... tapping my foot- sighing, etc... But then it happened- Several days later, the Conc Republic lifestyle change was complete- going to the dry cleaners for my suit- I was told it would be ready in 45 minutes... I said "cool- and sat on the provided couch and read a magazine..." It could have been the snorkeling, scooter rides, deep sea fishing- or simply reading a book on the beach... The Key West experience became a yearly adventure- leaving snowy Vermont in April and kick starting the spring/summer season.

Tonight the Plant City Car Show is downtown- so we will more than likely walk that...it happens every third Saturday in the month, and brings a lot of cars... especially in the winter when the snow birds are down here...

Maybe I will take a Benedryl and start that book....

God Bless,

Day Six- Roids

Thursday-sitting at the computer- arranging the piles of stuff I need to do.

1. Pay bills
2. Answer some cards and letters
3. Answer some emails from former work mates
4. Switch over my 401k
5. Consider whether the legal firm that is soliciting me to represent me to the SS disability office is legit. The long-term disability company brought them forth, and claims to take their compensation from the insurance companies portion...
6. Set up a cell phone service for Denise.
7. Wash the mustang
8. Spend some time reading and praying -A favorite daily activity of mine
   
   Still no word from The St James concerning the trial... or schedule for a Bone Marrow Transplant... I am feeling pretty good- a bit itchy...but nothing some bag balm won’t cure... My granddaughters are here-playing outside. When they come in- due to heat, I will turn on the National Geographic Kids Channel... yesterday we sat through a wonderful travel feature on Ireland...
   
   Poppa’s Boot Camp...
   
   God Bless,

Day 4 on the Roids-

I feel pretty good. My skin is clearing up- my swelling has subsided... Not too irritable- yet... I have slept in my bed (instead of my chair) for the last two nights now... so all is well, for the moment.

I am waiting to hear from OSU when I should come for a treatment- if I get on the Cal 101 phase 2 trial. If not, maybe I will try the Tru-16...

I looked at some of the Treatment Centers for the Bone Marrow Transplant... OSU does not have the number of Matched Unrelated Donor Bone Marrow Transplants as say, MD Anderson, Dana Farber, The Hutch- or even Moffit, here in Tampa... So why am I going there? Certainly not for the experience... I guess it comes to trust and faith... a Christian Doctor well known in the CLL world once told me that I could trust Dr. Byrd to lead me the correct way... There is peace knowing that one can trust someone... Besides, OSU is close to my birthplace-Cleveland. I have family and friends near by... Maybe being one of a few transplant patients there will make me more special- not just another notch on the belt... I am not sure...

Texas may be a viable option---but I have heard the term "cowboy" once too often in relationship to the treatment there...

I ask Him to direct my path--- and place my faith in His wisdom...

God Bless

Health Care

We are at a perplexing point in our country... Should we have insurance companies making medical decisions? Bureaucrats? Who should pay? Is it a birthright? A personal responsibly? Should some pay more than others?

Where is the greed: Insurance Companies? Big Pharma? Tort Attorneys? Doctors? Politicians? The rich?

Do we regulate or educate?

Do we insist- or suggest?

I believe health care for the needy should be above saving the salt marsh mice...

I believe there are circumstances where a hand up is required and should be extended.

I believe in encouraging self-reliance.

I believe paying for your health insurance is more of a necessity than say a plasma television.

I believe a person blindsided by a major illness can reasonably expect some benevolent public assistance.

I believe ridiculous medical lawsuits and class action suits need to be regulated.

I believe the extreme rhetoric from both right and left has become ridiculous...

I believe common sense is needed- with our benevolent hearts.

I pray some common sense solution is found...

Growing up in southwest Cleveland (we moved so often we had a frequent flyer plan with U-haul.) I discovered early on I did not want to be a “ward” of the state... qualifying for free lunch and such- by age 12, I turned the free programs down... Pride? Yep. I did not want anyone taking care of me. Was this too much pride? Nope- just enough to move me over and out of that situation...

I find myself now at age 54, a somewhat a crusty conservative, a former republican- disenfranchised with both parties... But even as a bootstrap republican-I always felt that federal and local government should have benevolence to the needy people, and there must be reasonable expectations of those people to address their own issues, as possible- when possible.

As an adult many times, I worked two jobs to dig my way out, to provide the basics plus for my family. I sometimes had to humble myself- I had to fall to my knees. I had to look for something less desirable- and most times I had to put off some of the things I wanted... until I could afford them without going on the payment plan...and eventually- with His grace, I found a success that was more than could be expected for a welfare kid from Cleveland.

Can I credit my success to my own hard work? I would love to say yes- but I cannot, I did have help... My faith in Christ Jesus, and His words sustained me as I cried out in anquish- as I failed and fell-He lifted me again and again... and provided me with a roadmap to follow in His word.


God Bless,

End of Day One

With 40mg of dexamethasone I felt pretty good today...Kind of like my old self... a bit more energy to say the least. I felt this way when I first started this treatment last year as well... still working I blew apart my contact management and could see a definite increase in productivity...Like the "old Randy"- pre CLL...

Unfortunately it seems to escalate my mood as well... I recall being on a business trip last late summer, getting a Charger Hemi as a rental car-with XM satellite radio blaring classic vinyl and driving way too fast on the interstate... I also made some pretty abrupt comments to people as well along the way... Eventually, after five months, I was weakened to the point of hardly being able to walk up the stairs... I did so, one step at time, like a child... That lead to me taking disability... knowing it was time to hang up the spikes.

But today, the skin eruptions are subsiding- my ankle has decreased and is returning to normal...everything seems to be "drying up..."

So, while I am happy today to feel the "old Randy" coming back- I know it is not sustainable for any long period of time...not with the steroids...

Looking for the Bone Marrow Transplant to be the definitive answer to this CLL roller coaster...God willing...

Back on the Roids

Just a recap"

For over five years now, I have had skin eruptions of varying degrees- They sometimes start as a swelling on my legs and arms, and then a pimple forms and it erupts with a clear sticky crusty liquid. It is disgusting. Occasionally I have facial swelling- twice now around my eye causing me to be hospitalized... I now have two new eruptions on my forehead---sort of like Tom Hanks in “Philadelphia”, as well as on my jowl and even on my left index finger. I count ten such eruptions of varying condition on my right leg, numerous on my left- mostly near healed, and right elbo (looks like a golf ball).

My lymph nodes are noticeably enlarged- in my upper thighs... particularly my right...however my left is gaining on it. This skin issue is what originally brought me to a CLL diagnosis.

I have gone to numerous Dermatologists as well as Infectious Disease Doctors with varied explanations of what may cause this...The only thing that seems to keep it somewhat under control is antibiotics, chemotherapy, and steroids.

The skin issue also was controlled early on with my treatments--- although the CLL was not sent into remission.

2005-Fludarabine Rituxan
2006-Pentostatin Cytoxan Rituxan
2007-Flavopiridol (also hospitalized at JCC- antibiotic IV)
2008-steroids (dexamthasone?) 4 days on 4 days off. I had to discontinue- got extremely weak.
2009-Treanda-discontinued, this treatment did not seem to make a difference...either skin or lymph nodes.
IVIG- monthly, starting last summer

I called Ohio State yesterday and spoke to them about this continuing saga....It was a year ago that OSU first started me on this treatment of Dexamethasone with pretty good results skin wise. I discontinued it in January when I felt it had pretty much beaten me up and weakened me...and caused some erratic behavior.

Because of the return and the intensity of the eruptions/lesions- I have relented to start again on a one week basis- 40mg daily...I need to be off steroids at least a week before I start treatment- supposedly Cal 101- a trial program, loosely scheduled for the end of this month to hopefully prepare me for a bone marrow transplant.

Hopefully this will keep the eruptions at bay...

tossing and turning

My skin problems continue: extreme itching gave me an uneasy night’s sleep. My face has been particularly “itchy”, so much in fact that the night before last I got up and shaved. It didn’t help.

Last night I got up and watched Craig Ferguson’s late show... I dvr it since it comes on at 12:30AM- I think the guy is very funny. He is a naturalized American from Scotland, a recovering alcoholic who has a strange sense of humor. I dozed off and on in the leather chair and went back to bed at 6AM. I slept a bit until 9, and then up and at ‘em for the day.

My forehead seems to be almost healed, as is my neck- but I now have a swollen right ankle and leg. That started a few days ago- fortunately, it has hit its crescendo yesterday, and we are on the down side. It just looks terrible. After so many years of dealing with this, I can tell when the “extreme” skin eruptions have run its course. They never fully go away, they just intensify at certain times of the year- April and July. Maybe it is something that happens in this tropical region of Florida that sets it off during those time periods. It probably did not help matters to cut shrubs and rake outside.

By next April I should have had my Bone Marrow Transplant, with a stronger immune system.

Ok, I am not too swift

My last post mentioned how the heat might exasperate my skin eruptions... I wrote it, thought about it... and then in the heat and humidity of Florida I went and trimmed the bushes and raked the yard.

Macho man.

My ankle looks like a softball- my skin itches insanely...I barely got any sleep last night... and I am popping benedryl like m&ms.

Hot and Humid

July in Florida... Hot and humid. Tough for a “full figure” boy like me. I also suspect the heat exasperates my skin issues (associated with my CLL). I currently have skin eruptions on my neck, upper forehead, and ankles. They appear as a swelling, then a point that looks very much like a bug bite, then a draining of fluid...clear and sticky. Denise is tired of my other joke- about her not liking burnt toast- when someone sees the band-aid on my forehead.

The current eruptions can be easily covered by band-aids- so I can wear shorts...and actually seem to be on their way out...

Sometimes they are quite extensive- and cover my legs and arms... I have had twice now a skin eruption on the side of my cheek near my eye that causes a night or two in the hospital- to make sure my eyes are okay. I have been suffering with these skin eruptions for over five years. When I was working and at their worst- I would wrap my arms and legs in gauze and wear long sleeves and long pants- just what you want to do in the middle of July in Florida.

I have tried to determine what may cause it... diet- I stopped eating red meat (for awhile) and tried to go just organic... bugs? Florida is known for a few. Heat? I do seem to have an “episode” of eruptions when I get especially hot and sweaty---like raking the lawn. Maybe it is pollen. Don’t know. The head of Dermatology at Dartmouth, Moffitt, and Ohio State University have offered no solutions.

The Dermatology specialists have all chimed in on what to call it- folliculitis is the term most bandied about. Of course the remedies have been varied- one doctor told me to shower less, one told me to show more... many claimed there was no correlation to my CLL... It was not until I got a prescription from an Infectious Disease Doctor for daily antibiotics that “IT” seemed to be more manageable. I suspect the antibiotic’s that I take daily, the IVIG infusion once a month, and steroids have tamed them some. The eruptions now are not even close to the massive challenges I had prior to being diagnosed with Chronic Lymphocritic Leukemia.

Of that I can be thankful.

Attacked

I am not a bible scholar... some of the blogs I read are well thought out biblical essays. I am more of a meat and potato kind of guy. I am a blue-collar dude from Cleveland. I am a believer however...

The subject of the “Evil One” causes some concern among non-believers. Back in the 1960's,comedienne Flip Wilson use to say “The Devil made me do it.” Vampires seem to be making a strange comeback- but the Devil seems to be culturally "yesterday's news..." I believe in today's tolerant popular culture where everything is acceptable, it is not “cool” to believe in Satan...If you acknowledge that there is a God however, and that His son came to forgive us our sins-and His word is recorded in the Bible- then you must accept that there is also an evil one who wants us to fail in our relationship with Christ. It is in His word.

A few days ago, I felt I was being attacked... Not by bullies or gangs- but by evil itself. Health, family, finances, just about everything.I felt that situations in my life had compiled to a point that I could bear it no longer... We do have an enemy, one who wishes us to sink into despair and depression- but through His word, and the prayers of fellow believers the evil one can be defeated... By reading His word, asking for prayers from His believers, I made it through the tunnel. Thanks is given to my friends at CLL Christian Friends, my old (former) pastor and friend Bob Moston...and of course our savior, Jesus Christ.

I do not know how non-believers do it... but some suggest that they are not a threat to the evil that exists- only those that are in a relationship are a threat to the evil one. Ironic.

I know that God does not allow us to endure more than we can handle... I sometimes wish he had less faith in my abilities...

Proverbs 3:56: Trust in the Lord with all your heart. Do not lean on your own understanding. In all your ways acknowledge Him and He will direct your paths

July 1

July 1st....wow, the year is really moving along. Being in Florida, I sometimes miss the seasons- but there is no missing the Florida summers...hot and humid. In the north in the winter you can put on warm jackets, gloves and boots and go outside- summers here you go from air-conditioned car to air conditioned house or store, or restaurant... The heat exasperates my skin issues, so I am pretty much stuck inside. Denise tries to get some gardening and outside work done prior to 9 AM...

I was not accepted into the OSU Cal 101 trial... Apparently they only had two opening, and I was third on the list. The coordinator told me that if someone does not make it due to his or her poor physical exam, then I am up... I hope the two that are slated make it and it works well for them...I don’t want to wish them any illness.

They also have the trial at Moffitt--- I see my Tampa Hem Doc tomorrow...but I am not hopeful. Dr. Byrd suggested last week that if this was not available- I might try the Tru-16 trial... that would require me to travel to Ohio a bit more... I should have a clearing understanding of it all by week’s end- if the holiday doesn’t get in the way.

I got involved with some things yesterday morning and did not take my medications until mid day... at that point I decided not to take my Provigil--- it is a “speed-like” tablet that gives me a bit more energy, and I was concerned about it keeping me awake longer into the night. Originally developed for air force pilots to combat lack of sleep- it is now used most by narcolepsy patients... and those of us who have severe fatigue. I went to bed earlier than normal...