Getting ready to go

Good morning all

I lied. I am going to post today. A little one anyway. I am very curious about what is gong to happen today. I suspect my platelets are low and will likely need a transfusion, but will it be outpatient or inpatient since I already have a bed reserved and well frankly, isolating me from the rest of the world is always a good thing. We’ll see and I’ll know by 0930. As miserable as this round of chemo is I’d just as soon get on with it. So cross your fingers and say a little prayer.

Went to a place called Nino’s Ristorante for dinner last night and had the baked Ziti. It earned four out of five chemo bags. Very rich. I guess there’s more than one Nino’s I should really try the Pizza. As I’ve mentioned before, pizza – for me – is a standalone chemo wonder drug. So I should continue my research.

Speaking of chemo 13 approved products. I recently discovered the Craftsman Rear Propelled Rear Bag Key Start Lawnmower. This thing is cool. It starts with the turn of a key and the operator can control the speed of the rear wheel drive by tightening or loosening a little red handle. The only downside is -- this thing heavy and if you are tired or having a not so good day, it’ll drag you around the yard until your wife rescues you, sits you under a ceiling fan, gives you some lemonade, and then tells your sister your being an a**hole (not that I’d know anything about that). Aside from the tail whipping this thing can give you, the key start feature is perfect, as you don’t have to get in a wrestling match with a pull cord. It earns three and a half chemo bags. J

Here’s the real deal –it’s perfect for either men or women so the lawn can still get cut regardless of who is doing the lawn and who is doing the supervising. In the words of Montgomery Burn, “Excellent.”

I guess that’s it.

Peace,

Bill

Here is something to scare you -- me anyway

Came across this little gem of reality this morning. Yikes!  That is enough to focus me for the next few days! I sometimes don't take this cancer thing as seriously as I should because I am doing very well, but I have non Hodgkin's Lymphoma too. This poor guy -- Jeepers!

http://news.yahoo.com/spartacus-star-whitfield-dies-lymphoma-39-004301065.html

Spartacus' star Whitfield dies of lymphoma at 39

LOS ANGELES (AP) — Andy Whitfield, who played the title role in the hit cable series "Spartacus: Blood and Sand," has died at age 39, according to representatives and family.

Whitfield died Sunday in Sydney, Australia, 18 months after he was diagnosed with non-Hodgkin lymphoma, manager Sam Maydew told the Associated Press.

"On a beautiful sunny Sydney spring morning, surrounded by his family, in the arms of his loving wife, our beautiful young warrior Andy Whitfield lost his 18 month battle with lymphoma cancer," Whitfield's wife Vashti said in a statement. "He passed peacefully surrounded by love. Thank you to all his fans whose love and support have help carry him to this point. He will be remembered as the inspiring, courageous and gentle man, father and husband he was."

Andy Whitfield — who was born in Wales and moved to Australia in 1999 — was a virtual unknown when he was cast as the legendary Thracian slave in "Spartacus," a role made famous by Kirk Douglas in the 1960 Stanley Kubrick film.

The series proved a breakout hit for the Starz network and made waves with its graphic violence and sexuality.

Whitfield appeared in all 13 episodes of the first season that aired in 2010, and was preparing to shoot the second when he was diagnosed with cancer.

While waiting for Whitfield's treatment and expected recovery, the network produced a six-part prequel, "Spartacus: Gods of the Arena," that aired earlier this year with only a brief voiceover from the actor.

But in January after Whitfield's condition grew worse, the network announced that another Australian actor, Liam McIntyre, would take over the role.

"We are deeply saddened by the loss of our dear friend and colleague, Andy Whitfield," Starz President and CEO Chris Albrecht said in a statement Sunday night. "We were fortunate to have worked with Andy in 'Spartacus' and came to know that the man who played a champion on-screen was also a champion in his own life."

Whitfield's previous credits included appearances on the Australian TV shows "Packed to the Rafters" and "McLeod's Daughters."

Hospital manana, nurses, and snacks

Good morning Chemo 13:

I don’t have a lot to report today. I woke to find the Dallas Cowboys gave another one away in the last minutes of a game. God, these guys are more trying than cancer – I should know. Fudge – I wanted to use another word that begins with Fu, but I m saving that for the Freaking Red Sox who have begun their September swoon in typical fashion. Following these two teams makes taking chemo seem like a blast! They’re killing me!

Can you believe it’s September 12, 2011? September 12, 2011! Jeepers creepers. I feel like Rip Van Winkle … I’ve slept the summer away. Oh well, I guess that’s how that goes.

I probably won’t write to you guys tomorrow; it’s a hospital day. I’ll go to the doc at 0900, get my blood checked, and head over to Christiana Care if my platelets and hemoglobin check out. I’m a bit skeptical at the moment, as I’ve had a runny nose this weekend and my calves have been aching – for me that usually signals low blood counts, but we’ll see. After I get the thumbs up from the doc, I’ll mosey over to Wawa and get my pre-chemo large roast beef sub with extra meat, American Cheese, lettuce, tomato and mayo. After that I’ll go to Christiana Care and check in – keep your fingers crossed for the bone marrow unit!!! If you have to get chemo for four days, that’s the place. Anyway, I’ll chill out for a little while, take a nap, and begin the poisoning at about 1630 (4:30 pm).

I started reading Seven Pillars of Wisdom by T.E. Lawrence. If that doesn’t cure my insomnia, nothing will.

I have a lot to do today and tomorrow before I go to chemo. I have to finish my long term disability packet, I have to contact the Defense Finance and Accounting Service because I need a new login for the super secure retiree website, I need to fold some laundry, and I need to put my overnight bag together.

I should probably run over to Dunkin Donuts first thing tomorrow morning and buy some coffee for the nurses. You know, I might run over Dunkin get the nurses some snacks first thing in the morning, run by the cancer ward and then roll by the Helen F Graham Cancer center to see the doc. I have to go to Pathmark today too. I need to get some cookies for one of the nurses.

I guess that’s it. I’ll talk to you all tomorrow night or Wednesday morning.

Peace,

Bill

Little adult thoughts

Good Morning all:

I am going with small thoughts today.  The past couple of days have made my head want to explode. To the mundane -- 

Feeling okay today. I have a lot on my mind, but it empties quickly and I forget most things anyway – oh well (that’s actually a joke). Off to the hospital Tuesday for chemo round six of eight.

I can feel that my blood numbers are okay – not great but good enough for the next round. It’s odd, when my platelets are low, I get a runny nose like a fiver year old and if my red blood is low, my calves ache. It’s weird how your body comes up with little warning signs.

Today is bill paying day at the Potter house. I’ll knock that out in a little while, but first I’m gonna go back to bed for an hour or two.

I guess that’s it.

Peace,

Bill

Big adult thoughts

Good morning all:

Big adult thoughts still going on in my head.

I need to drive on with the Long Term disability paperwork. And I need to drive through the finish line with the chemo regardless of what happens beyond that. If it blows up my face … well it blows up in my face. There’s not a whole heck of a lot I can do about that.

It’s all very hard.

One of my many personality foibles that has, over the years, been blessing and a curse is my organizational dedication. I tend to put my organization first – that whole idea of selfless service and organizational loyalty is always a big deal. That manifests itself in getting back to work as fast as possible. Maybe its time to put self before organization.

My doctor is concerned I don’t appreciate how hard this has all actually been and that I may not even be physically, emotionally, or spiritually ready to return to work as fast as I want to given the rigors of the past six months. A lot to consider.

Oh well more tomorrow.

Bill

disability, fear and Murphy

Good morning everyone:

When I first started this blog I said I’d work to be as honest as I could. For the next little while I’ll be wrestling through some really important ideas and trying to figure out my next steps.

There are a couple of things running concurrently in my cancer recovery and return to work life that are causing me great anxiety. There’s really nothing that can done except for me to analyze this stuff and make some adult decisions. Getting my thoughts on paper will at least help me think effectively.

Some background. On or about (o/a) October 17^th my short-term disability through my job at the State of Delaware will end because I will have been on the program for 182 days while fighting this cancer. Had it just been the Burkitt’s Lymphoma, there wouldn’t be a problem because I would have had enough days to go through the eight 20 day blocks of the Hyper RCVAD chemo I am going through. Ahh but two problems snuck in. I did not calculate the original bowel resection surgery into my projections, nor did I account for an additional 15 lost days due to blood infections/levels and some scheduling snafus not of my making.

The result is o/a 17 October I will be on day 15 of block #7 about 25 days short of my completed chemo; with one more block to go.

In anticipation of that, I am submitting a Long-term disability application with the state’s insurer. I turns out that this is not an automatic acceptance thing, but rather an application approval thing. If approved I can get up to 60 percent of my base pay for a period I have yet to figure out. I could get nothing. The thing that really gives me pause is that on the 182d day I am terminated from state service, pending my doctor’s approval to return to work. As I understand it, I have some reemployment rights as far as this goes – but nonetheless I am terrified of Murphy! Remember Murphy’s Law? If something can go wrong it will?

So the major question is: “How much risk am I really accepting?” One would think I could stand on my head and do 25 more days of cancer treatment with or without a long-term disability program, but there are other considerations. If things continue on schedule I would complete the entire eight blocks including recover o/a 12 NOV 2011. My final infusion of chemo drugs would take place on 3 NOV 2011.

God this blows!! I hate being an adult.

So that’s kind of the overall situation – but the Devil is always in the weeds, you know? 

The weeds. I need more info. All my calculations were based on moving smoothly from one block to the next, with little if any complications causing delays – I didn’t build in any downtime. But as I discovered, sometimes you don’t get a vote. But, I also have an ace in my back pocket, I just don’t know how, or if to play it – my cancer is in remission.

Here are some things I have to know.

After the final infusion o/a 3 Nov, what happens next? When do I get the Hickman removed? How often do I have to go to the Cancer Center after that?

Typically how long after finishing Hyper R CVAD chemo do people return to work? Since I am not typical, what does that mean to me?

Do people typically return to full time status immediately?

Am I tough enough to return immediately if I had to?

Given the cumulative effects of the chemo, do the second half blocks have more delays than the first?

Since my cancer is in remission, what is the benefit to continuing chemo, losing my job, and then getting it back again? Does it make more sense to just stop? Are there future insurance considerations if this cancer were to come back? Poop1

Like I said all adult stuff!

The bottom line – I have a doctor’s appointment today and it is time to start figuring the end state. The only thing I know for sure is I need to submit some paperwork ASAP.

Thanks for listening,

Bill

feeling better 7 sep

Good Morning everyone:

I feel like I’ve been in a meat grinder for the past four days, but I’m coming out of it in pretty much one piece. God bless America!

For some reason this last round of chemo has been especially hard – or rather recovery has been especially hard. My hands haven’t worked (neuropathy) quite right, I’ve had some incredibly annoying insomnia, and my stomach has this – and you’ve heard it all before – unrelenting gurgling.

I went to see the doc yesterday and of he was quite happy with my progress. How did he put it? Something like, “I don’t want to make light of your discomfort, but this is all to be expected. You’re actually doing very well especially when you consider the intensity of what you’ve been through.”

He said that all my numbers are trending up and things look like they’re going the right way – meanwhile I want to puke in a bucket. If I didn’t laugh, I’d cry.

The doc seemed to think the five rounds of chemo thus far are finally catching up with me a little and I am experiencing some cumulative affects from it all.

Went to bed at 1930 (7:30 pm for you non-nursing or nonmilitary types) last night. Man that was a great idea. I slept from 7:30 to 2 am, got up, had a bowl of cereal, and then went back to sleep ‘till 0500. I feel a lot better today.

I guess that’s it for now.

Peace,

Bill