Friday, August 30, 2013

Cancer tip #46


Cancer Tip #46– I hope this isn’t too controversial, but I’m gonna talk about religion and/or spirituality. Be specific in you pastoral care requests when they check you in at the hospital. I know that every BS story starts with, “I swear this is true.” This isn’t like that although “I swear this is true.” When the nurse wheels that computer cart in your room and begins asking you those update kind of questions and you get to “would you like some pastoral care?” Be specific. On one of my trips I’m not sure which block it was, or what was going on, but when they asked me, I was so miserable I just said yeah, yeah, yeah and waved them by with a dismissive gesture. I imagine in the basement of the hospital there is a room full of holy men/women in sprinter starting positions waiting for somebody to answer yes to pastoral and the all dash to the door to see who can be the first one to the room. Oh yeah – that’s how I see it. Because when I gave a non-specific yes, I got a parade of holy people from just about very denomination you can imagine. The only no show was an Imam. I had priests, reverends, rabbis, and some guy who, to this day, I don’t know what he professed. They were all wonderful people, but there were a lot of ‘em. I won’t even go into the offer I had from a wonderful Native American to smudge my room to purify it. Anyway the parade ended with this priest from the local Korean Catholic Church explaining Groupon to me. Be warned. 

Tuesday, August 27, 2013

Cancer tip 45


Cancer tip 45 – Don’t tolerate shoddy home health care. I had real problems with the yahoos they sent me from the local visiting nurses place. Send letters and emails to their bosses and don’t let them bully you. The only nurses your life depends on are at the hospital or chemo suite. 

Monday, August 26, 2013

Running to Booze

I had a major breakthrough the other day. I got my fat (and I do mean fat) old body to plod (aka run) for 100 minutes last week. That is a new world record. I’d call it ten miles, but it sounds cooler to say 100 minutes.

Not only that, but I drank booze Frida night. So There you have it booze and running. I’m a crazy man. Two glasses of beer and two glasses of wine over a six hour period. I’m wild. I ate way too much this weekend, but I am working on my carbo-loading.

Super busy week this week. I got speeches, meetings a proposal review thing, and assorted sundry “if I don’t do it the world will end” tasks. Thank God labor day is this weekend,

Cancer Tip44


Cancer Tip44: Prescription Control: Because you will be on 36+ different prescriptions:  Preparing a spreadsheet drug schedule which will come in handy when dosing yourself up with all those drugs!  I prepared one for prescription drugs & OTC with: what it was, dosage amount, what it was for, when to take it and left blank parts to fill in by hand such as date, time, and dosage amount.  This helped keep me on schedule and ensure I took what I needed when I needed it no matter where I was and I didn't OD on the plethora of pills.  I also carried this to the Oncol's office.  I still use an updated version of what, who much, when, how many, and why to my PCP or other specialist know what I'm on, how much, when.  I am not on as much but my mind is not what it used to be so when they ask: what are you taking; I pull out the list and give them a copy.

Thursday, August 22, 2013

tip 43


Cancer Tip 43 – This is from the nurses on the idyllic 6b and BMTU cancer ward on Christiana Hospital and it for caregivers. Ask doctors more questions! Apparently these doctors have it too easy and we’re supposed treat them Like Jack Bauer treats terrorists. Oh well! 

Tuesday, August 20, 2013

Tip 42

 Big boy stuff. Make lot’s of copies of your living will and bring them to the hospital with you ever time. I’mnot saying anything is going to happen I’m just saying … At one point they didn’t know if I was gonna be walking out or rolling out feet first and I was in no mood to take care of legal stuff. Luckily I had this binder (I’m a nerd in a lot of ways) full of “get your affairs in order” stuff and they had all those documents on hand.

Monday, August 19, 2013

Cancer tip 41’ish Essential Elements of information


Cancer Tip 41. Develop a list of essential elements of information. Now listen – as you wander about the hospital getting your daily exercise you’re not just wandering with no agenda like some zombie for the Walking Dead. IN the words of Dr. Evil, “Need the info.” There is stuff you need to know. Where’s the microwave, what kind of coffee do the nurses drink (K-Cups?), where do the drug sales people hang out, where is the water cooler that has the hot water spigot, what visitors are being mean to our nurses, what families bring donuts?
Grasshoppers, each will be explained in time although the donut one pretty easy -- you have to put on you your very best “poor me I have cancer face” and shamelessly stare at the donut box like a Dickensian waif in an orphanage wanting more gruel. Imagine a little British Boy with a cockney accent, “Excuse sir, (cough, cough), are donuts the same as when I came to the ‘ospital so long ago? No, no I don’t want one. I was just enjoying the aroma, sir. No one ever brings me donuts. (cough, cough) Okay if you insist. And then o slowly and painfully shuffle away. Don’t skip away or do a jig because you bilked someone out of a free donut. It’ll ruin it for the rest of us.

Friday, August 16, 2013

Cancer tip #30 -- something

Cancer Tip #35 – Bring lots of change – Okay this actually two tips in one.  First wear pants or shorts that have pockets. There may be things worth stealing as you GOYA and wander down the hospital hall. Kleptomania aside, this brings us to our second point, bring lots of change for the vending machine and carry it in your packets. You’re gonna be busy with your IV pole so you can’t carry a bunch quarters in your hands as you sneak off for a Swedish Fish resupply.

Thursday, August 15, 2013

Quick tip 39

Quick tip 39 -- I’m not a doctor, though I play one when my wife and I are alone, consider using condoms for a while. ‘Nuff said.

Sex and Lymphoma recovery


Cancer tip 38 – Since Lance brought it up (no pun) let’s talks sex. I can only talk for middle-aged fat guys from Delaware with a smoking hot wife and three nosy dogs. Give it time. Just give it time. From all the pounding our blood took there is going to be a period of “what the hell just happened” and sex is way off the radar screen. Not only that with every Cialis add reminding us, “It may be a matter of blood flow,” the leap – real or imagined – from blood flow to blood cancer and performance anxiety create a real mental mess. Here’s the thing – all things in time. Middle-aged fat guys from Delaware will bounce back in about six months or so if you can manage to keep the dogs away from the door of whatever room you are using. Especially the GD Yorkshire Terrier. 

Wednesday, August 14, 2013

Tip #35


Cancer tip #35. Get snacks for the nurses. Your life depends on nurses. Keep them happy. Regardless of what they say, they love junk food. I’ve heard the lies, “Fruit, and healthy snacks! Why we never eat sugar.” You bring some cookies in and they’ll be all over them like piranha on a fat man.  J Seriously ... I’m not kidding. Get your nurses snacks. Alright fruit if you have to.

Tuesday, August 13, 2013

Yech, yech, yech, Ensure freeze pops


Cancer Tip #34 – Mix ice cream with the Ensure and freeze them both It’ll taste like a fudge pop and cut the chalkiness.  – Sooner or later a bottle of Ensure somehow makes it to my food tray. No matter how much I lost my taste buds, that nastiness was unpalatable. Ensure – nasty, nasty, nasty.  Freeze it or toss it. 

Secret menu


Tip 33 – Get the secret menu. Okay I’ve mentioned this before, but there is a secret menu at most hospitals; you have to ask for. You don’t have to eat all the mass produced stuff everyone else gets. You can have your own personalized institutional food just for the asking. For example if you like hotdogs (who doesn’t?) you can eat them to the point of nitrate toxicity, just by asking. 

Thursday, August 8, 2013

Tip #32


Tip #31 – Be forgiving. When you get cancer, especially something like Burkitt’s people get freaked out and don’t know how to talk to you. They’re going to be thoughtless, say the wrong thing at the exact wrong time, and not even realize. Take the high road. Be forgiving. They don’t understand.

I once had somebody say, “My uncle had that. He died, but you’re a lot stronger than he was.”

Part of it is cancer patients are a mortality barometer to people. They see us – as you know only beautiful get Burkitt’s – and say, “Hell if he/she can get it, I can get it too.” And of course they’re right, but …

Wednesday, August 7, 2013

tip 31 and some serious BS

Every other Tuesday I go to a cancer survivor’s support group. Last night I got into a stream of consciousness loop about my treatment at the group and the other group members were astonished at the aggressiveness of the treatment. I drove home thinking about it all and as it fades into the background of life, I’m kind of stunned too. It’s hard to believe I did all that and lived to tell the tale. When I tell the stories, they are so fantastic that I am sure people think I’m bullshitting them.
Had I not been there for the 800 hours of chemo I wouldn’t believe it either. I’m just saying.



Tip #31 – Get a recliner. From Decadron to anxiety there are gonna be plenty of sleepless nights and a recliner can really help with the quick cat nap or make it easier on your caregiver as you slink out of bed at 3 a.m. I love(d) mine I still use it most days after work.

Tuesday, August 6, 2013

stomach yucky and tip 30


I’m doing fine, but I felt nauseous after my run yesterday. I am such a hypochondriac now. As you all know since my cancer started in my intestines I am leery any time I get a stomach ouchy, but I didn’t panic last night. I had a couple of PB&J’s , did some writing, watched a little TV, did some reading and went back to bed. 

Anyway tip 30.

Cancer Tip #30 – Shave you own head before your hair falls out. I don’t mean you actually shave it, but have your lover do it. With the right music on in the background and the proper amount of crying while it’s happenings it can be on e of the most romantic things ever – kind of an upside-down redo of the scene from “Phenomenon” when Kyra Sedgewick shaves John Travolta (okay that’s creepy). Regardless, shaving my own head seemed to symbolize gaining control over an uncontrollable situation. 

Monday, August 5, 2013

tip 29 and whining.


Hey guys:
Good morning. I’m thinking about moving all my blog stuff from here to facebook. I put together a Chemo 13 page a year or so ago and never used it. Maybe I’ll just keep it the way it is. Not much going on right now. I ate way too much this weekend and am really bloated. I realize that has nothing to do with recovery, but what the heck. Tip #29 is below. 


Cancer Tip #29 – Develop a system to remember what drugs you took. Those little trays with Monday, Tuesday, Wednesday, ets. Work okay, but I discovered I was too lazy and would drop stuff anyway because my hands shook. In lieu of that, when I took my pills in the morning, I turned my bottles upside down in the evening, right side up. That way I knew what I took. 

Sunday, August 4, 2013

play and tip #28


Okay before I get to the tip, i was looking over Bill’s Burkitt’s Play and I am ready to work on it some more. When I started it I didn’t know half of what was going to happen. Now I have some good material. It’s gonna work I can see the end now -- no not that end the end of the play. 

Cancer Tip 28 – Find a way to spit in cancer’s eye. A little, “Hey you cancer, kiss my ass.” My little bit of protestation was to walk in and out of every hospital visit and every oncology appointment. It was hard sometimes, especially when I had some motor control issues. I’m not suggesting everyone do that, but find something that is just between you and cancer; something empowering to you and demeaning to cancer. 

Friday, August 2, 2013

Tip 27


This one is from Steve Musser.
I've got a tip for those out of treatment. I have a hard time walking or running because of the neuropathy in my feet, but I found that investing in a bike has been great. It allows me to get a little more exercise and is much easier to bike 7-10 miles than to walk 1, and I don't have to risk tripping and falling when my feet don't cooperate.

Thursday, August 1, 2013

tip 26


Tip 26 or so – Again I won’t know until I get my Mac back.

Cancer doctors aren’t real doctors. They don’t care about the whole person. They have one mission – Kill Cancer. That can create boundary issues when mundane healthcare things pop up during treatment or recovery. I guess the thing is to make sure your primary care doc is kept up-to-date about what’s going on and go to them also when you should.