Saturday, September 28, 2013

I narrowly escaped


Dear Burkittians:
I was mugged last night – by a group of 60+ year old water aerobics ladies. It’s true. Me – whose body was crafted on Olympus and forged in the same ovens as German Chocolate Cake, I was waylaid by smiling grandmothers and lured into a sadomasochistic 90 minute ritual of exercise and swimming pool volleyball. They were evil. I tell you evil, with their talk of covered dish goodbye Pot Luck after next week’s water aerobics class. All the while a Life Guard paced back and forth and never once offered to jump in and guard my life as these Marquis De Sade matrons tortured me with shoulder circles, leg kicks and Styrofoam dumbbells. P90 X -- I’m not impressed. These grinding grandmas would turn Tony Horton into a blithering idiot. They made me do leg lifts, crunches and all sorts on unimaginable movements meant to reduce a man to tears. All the while, I’m huffing and puffing and they are casually chatting about recipes, trips, and the inevitable battle of decorating the house for Christmas. It was all I could do not to drown. You know what’s worse? These torso-twisting terrorists were only the “coping with arthritis” squad. Can you imagine what diabolical dexterity is required from the full-functioning water aerobics class (class - misnomer for sure)? 

Friday, September 27, 2013

Angry tip #58


Cancer tip #58 – I lied I’m not talking records today. As you all have probably guessed my now I can be an opinionated meany especially as far as adult Burkitt’s patients are concerned. I need to be clear; I can only talk from my experience. Someone could easily infer, from the session I went to at the blood cancer conference, that patients should take chemo, lie in bed, and surrender to the world at large, while caregivers shoulder the load of every logistic issue small and large, ranging from nose wiping, to coordinating with health insurers. It makes my blood boil. Balderdash I say! Balderdash!
Again I can only speak for me and my experience, and remember I almost died from infection and blah, blah, blah. The main thing patients’ want is someone to hold their hands when needed and someone to bitch to. All of the stuff I’ve been talking about the adult patient can do early in the journey. He/she isn’t helpless. On the wall of the cancer support community where I go ever Tuesday night there is a picture of the founder and a quote that says patients have a much better chance of survival if they advocate for themselves (or something like that). Anyway, the point is, caregivers are not pack mules, or litter bearers. Patients have work to do to make the caregivers life easier. I guess that’s it – I don’t know where that cam

Thursday, September 26, 2013

Cancer Tip 57


 Caregiver stuff continued. Boy, apparently there was a lot of info at this session. We’ve already talked about the value of asking questions of everyone in sight. It is important to compile questions between appointments and hospital stays. List them bring ‘em with you and write the answers down in your decorative cancer notebook. We all know that, but this guy suggested that we ask the rest of the family if they have any questions for the docs, nurses, nutritionist, and etc. This may uncover questions you hadn’t thought of, but may also help younger family members feel part of the team and not be bystanders in the biggest battle that can hit a family. I guess that’s it. Tomorrow we will talk about documents, records, and binders. 

Wednesday, September 25, 2013

tip #56


Cancer tip 56 – Caregiver stuff continued. Contact info. Pestering doctors is what we do, but in order effectively drive them as crazy as we can, we need to know how to contact them.  Somebody should make a list of all the needed potential contacts. I say make the patient do it – his dance card probably isn’t all that full and would welcome the task. Those numbers need to include everyone on the medical team, employers, insurers, pizza delivery boy (no kidding mine is on speed dial), and anyone else who can help in a pinch. That list should be posted somewhere at home. I had one of those cork bulletin boards I put I the kitchen (the pizza joint’s flyer was also there). Now here is the trick – know what an emergency is. After different times an emergency can mean different things depending on where you are on the journey – so know what one is and know who t call when you have one. Some doctor’s use a service after hours and some may ask you turn off the call waiting on your phone before the doc calls back. Anyway, know how your phone works. Adult patients have a lot of info they need to share --- so sweat ‘em. Like who’s the little old lady that handles disability at the office? Why do you have Selma Hayek’s home phone number? For someone who can’t taste anything, you sure have a bunch of restaurants on you contact info, why is that?  Who’s the nurse navigator coordinator at the doctor’s office? Pay special attention to the after hours stuff. Oh I almost forgot, when the hospital calls to update your before your scheduled stay make sure you get a call back number in case you have to answer the door for the pizza guy. 

Tuesday, September 24, 2013

tip 55 care giver commo


Cancer Tip 55 – Caregiver Communications concerns. Okay we’ve talked a lot about some of this stuff in different posts. You know, tape recorders at appointments, use of blogs and caring bridge to keep people informed, and etc. One note I picked up is that caregivers have to understand how patients best communicate. All of us have different modes of communications we favor. For example I hate talking on the phone.
Okay, the social worker that ran the session stressed that people who have never been caregivers, don’t get it.  They don’t understand. I prefer t think that they CAN’T (language matters) get it. For that reason, caregivers need to be exact when non-caregivers ask to help (let them ). The communication audience for caregivers has increased so has the language requirements. They now may have the chance to talk to doctors, the entire medical team, family, friends, the always-pleasant insurance calls, and the employer. Each new constituency has its own language the caregiver may need to learn and a whole series of points of contact. Don’t forget to keep the patient involved he/she should only be playing the cancer card when it comes to cleaning the house. One other thing – try to find some poor unsuspecting schlep to be the stand-in caregiver when you’re not around (you can’t be everywhere). I had this wonderful lady down the street who took me to an appointment to drop me off and ended up getting stuck at the chemo suite for like seven hours because they had to get me a hospital room and pump me full of stuff.

Monday, September 23, 2013

tip 54


Cancer tip #54 – Okay guys I went to three sessions last week and came away with some really good info about Chemo Induced Peripheral Neuropathy (CIPN); Caregiver Maintenance; Americans with Disabilities Act; and some cool stuff about breakthroughs being worked at the University of Pennsylvania. 
I took a ton of notes, so let’s go. I think I’ll start with caregivers. Let me get my prejudice out of the way before we go any further. Having a caregiver doesn’t mean the patient gets to sit on his duff and direct actions like a wounded potentate. In the world according to Bill, adult patients are responsible – not caregivers – for keeping track of some stuff (e.g. updating drug lists, keeping appointment calendars, and communicating with crazy relatives). Kid patients are altogether different – I’m sure. Caregiving is a super hard job and patients are pains in buttocks and having some middle-aged fat boy whining about his pillow being fluffed – well, that dog don’t hunt.
Where was I? I better ask my caregiver.
For caregivers there is no training, the world drops this on you from nowhere, and nobody takes anything off your plate. In most cases caregivers learn from their patients what is needed. The thing to remember is every other commitment before the diagnosis still exists. There are still jobs, kids, and house stuff to handle.
The next week I will rant about: Communications; Contacts; Questions; Emergency procedures; Current Conditions; Anticipating Change; Medications; Records; Document handling, and Recognition

Friday, September 20, 2013

blood cancer freak out


This is probably going to be an overly long note, but what are you gonna do; sometimes it takes me longer than I want to get to the point. Oh, well. I went to the Blood Cancer Conference with my bride, some survivors and their caregivers I know (truly beautiful people) and some of the nurses who worked me over (in a good way) when I was sick. Anyway it was a good deal – when it was all over.
Even so, it was kind of rocky at one point. And I got kind of freaked out.
I am in this big auditorium at the University of Delaware. It seemed as if it was all beige; beige stage, beige walls, and all pretty bland. The harsh lights added to the beige-ness of it all. The Lymphoma presenter was one of the docs whom took care of me when I was sick. He is a younger – younger than me anyway – man with a somewhat monotone voice tending toward the higher pitched side of things. Anyway he stood behind his beige podium bedecked in his white lab coat, pointer in hand and PowerPoint slides rolling on the screen to his rear.
And then it happened.
He got to the diagnosis and staging slides and it hit me square between the eyes – I forgot how miserable, terrible, and treacherous the whole journey was at the beginning. As he talked about the bone marrow biopsy, I could almost feel the needle piercing my hip again; I could see the doctor applying the blood/marrow to slides and setting them down on a wheeled steel cart with a towel underneath the specimens. My throat was constricting’ I’m not sure that was a panic attack, but if it wasn’t it ought to have been.
The slides moved on to the discussion of staging and the placement of cancer on the body above and below the diaphragm and what that means in relation to stages I, II, III, IV. I was freaked.
And it didn’t get better. The next set of slides talked about the mortality and morbidity of patients and risk assessments of patients < or > 60 years old. At this point I’m not praying to avoid relapse, I’m praying that it happen before I’m 60. I soon get up and wander around the lobby outside the auditorium. I eventually calm down go back inside and gut out the rest of the presentation.
After that brief episode I was okay – sort of, until I watched the Philadelphia Eagles, then I felt just as bad. 

Thursday, September 19, 2013

Tip 53


Cancer Tip #53 – Talk about something else for a while. Okay I know that fighting cancer is the most significant emotional event that will or has happened in our lives and that of our family’s, but man we need to give it a rest sometimes, especially for our caregivers. There are times when cramming one more bit of information about neutrophils, C-Diff, or that damn insurance company, is going to make their heads explode. I bet sometimes it’s like being locked in room with a life insurance salesman – good information, just too much of it. If you’re looking for something to chat about that is not cancer related you could try talking about how wonderful I am, the Boston Red Sox, the Dallas Cowboys, sunsets, or Monte Cristo Sandwiches (aren’t they the perfect meal, I mean French Toast wrapped around ham and cheese). I feel like George Costanza talking about manure. 

Monday, September 16, 2013

tip #52


Cancer Tip #52 Be a patient patient – I’m too funny. You saw what I did right I used the same word as an adjective and a noun. I think it’s an adjective, could be a gerund. Damn I’m screwing up the pun. Regardless, This Burkitt’s thing is pretty miserable while you’re in the middle of it. The thing to remember is this; “today is going to suck, but this isn’t about today. It is about tomorrow.” There are lots of winding and detours to get to tomorrow, but if all goes well, tomorrow will be way better than today.  

Sunday, September 8, 2013

hey not much happening


Guys:
Been on quite a reading binge lately. Read some great books in the past two months. I don’t often read so many good books in a row. Read a weird book called The Watchers by Jon Steele – I’d recommend it. Not a whole lot to post today, but I felt like I should say hey. I guess that’s it.
Oh it should be an interesting day I the NFL today – Jets fans have Geno Smith starting, Cowboys v. Giants, I’m looking forward to seeing what San Fran has, and would’ve thunk the Broncos would smoosh the Ravens so decisively.
There’s a really bad show on TV called Siberia and I love it. I think it’s dead last in the ratings, but I’m hooked.
Had a bad neuropathy day yesterday. The pain across my feet was searing’ it felt like someone took a hammer and drove a nail through the top of my foot. Thank God those days are getting further and further apart. Fu#$^%.
Did I mention I’m going to New Orleans soon for a wedding. I won’t say when in case bad people are trolling the web and their looking to knock my house over. 

Friday, September 6, 2013

day off today!


Not much time for tips today. I have to get all gussied up for a round of 18 at Frog Hollow in Middletown Delaware. I’ll put out some more tips later. I took today off after putting in some long hours in the past few weeks – you know -- nights, weekends that kind of thing giving myself a second three-day weekend.

It’s wonderfully cool here today. The low was 53 last night (11 or so Celsius) it was great sleeping weather and it’s not supposed to be over 75 today. My biggest problem is my wardrobe. Pants or shorts? Hmmmm

I guess that’s it for now. Peace,

Wednesday, September 4, 2013

Cancer tip 49


Cancer tip 49 – Okay serious big boy stuff. I read somewhere that the number one reason people quit chemo treatment is neuropathy. It’s not puking, it’s not hair loss, it’s not feeling lousy; it’s the discomfort people feel from neuropathy. So the tip I guess is to know what the symptoms of neuropathy are and realize that a bunch of it will dissipate after chemo is over. Admittedly it can take years (I still have an episode every now and then), but it’s important to know when you make decisions about tour cancer journey. It would sure be sad to make a life threatening permanent decision to a somewhat temporary problem.