Wednesday, July 31, 2013

Tip 24, maybe 25

Tip # 24 or 25 – Jeez I am still flummoxed by Mackie being at the hospital. I’ll figure it soon; she should be back to me on Saturday. I’m skeptical. Anyway, thanks for the great suggestions about showering with picc lines. I’ll consolidate them all in a bit. On with Tip 20- something-or-other.
Do not allow yourself to pout, suck your thumb, or get depressed for more than 48 straight hours. During that 48 hour period listen to whiney country music, write depressing poetry, watch Ingmar Bergman films; or better still listen to modern remakes of classic tunes (that will really depress you. Lauren Hill’s mess of Roberta Flack’s “Killing Me Softly” comes readily to mind. I’m depressed just thinking about it – but that’s not the point.) On the 49th hour snap out of it. Take your non-dominant hand, reach up and pull on the hand with the thumb in your mouth until you hear a popping sound. Now dust yourself off and get back into the fight with a good positive mental attitude. Feeling sorry for yourself is good in stages and good cries are cleansing, but prolonged doubt allows cancer to redouble its efforts and counter attack (I think I mentioned that I believe cancer is a living, thinking enemy; I know it’s not true, but I believe it anyway.)
“Bill that’s kind of harsh?” you may be thinking. Well most remakes aren’t as good as originals.

Tuesday, July 30, 2013

cancer Tip 24

I’ve got a couple of more guest cancer tips to sprinkle in. And I have a request. Showering with Picc Lines how did you guys do it?
Cancer tip #24 – Don’t rub the site where you give yourself injections. It can cause bruising and look incredibly nasty. Giving myself injections was the one thing that broke me down emotionally. There was something about it that just tore me up. I used to do a little dance every time my doc would look at my numbers and say no more neuprogen.

Saturday, July 27, 2013

#21

Cancer Tip #21. This one is hard. Don’t chase blood numbers’ it’ll drive you nuts. They are important and all, but obsessing about them and putting them on spreadsheet and making graphs tracking them (I know from whence I speak) will just confound you. It is like when you’re on a diet and you hop on every scale you can find to see which one weighs you the lightest (and therefore most accurate). Sure you need to know, but don’t obsess, they’ll generally take care of themselves. For you rookies, it can all be very scary, but fear not after a couple of transfusions …

Friday, July 26, 2013

quick tip #20


Tip 20.

Okay quick tip from John. Once you're done with chemo be patient. Recovery is a long bendy process with lots of false starts and imperceptible gains. It truly is a matter of inches and ounces. It’s its own special kind of hell that can take years. Lots of false starts, until you find your way.

 I had to paraphrase John because my computer issues are back this morning. Macky (that’s her name) is blinking at me and I don’t know how long she’ll last before I do some meatball surgery on her. Anyway I doubted my ability to cut and past with my wounded machine so I took Johns idea and put it in Bill-speak.

Thursday, July 25, 2013

#19


cancer tip #19 This one is from Beth. And it’s a good one that I almost forgo all about. She writes: “Was visiting at the hospital today and thought of another one. Get dressed in regular clothes. I know that in the whole scheme of life that seems unimportant but, it gives a sense of normalcy about your life.” 


Things are going okay. Very tired today. Lots of home stress. Nothing too outside of the norm, but home stressors nonetheless. 

A minor catastrophe Tuesday, (if there is such a thing as a minor catastrophe). I dropped my wonderful MacBook in the parking lot of Delaware State University. I thought my padded carrying case was zipped, but it wasn’t. My laptop slid out of the case when I laced it on the roof of the car. Wham!

At first it didn’t work, but as I fiddled with it I discovered I have to put the screen just so and it works okay. The mouse pad is messed up, but the machine is useable. I have a great emotional attachment to this stupid thing; it was with for my entire cancer journey. I’ve get stickers on it. Poop.

Monday, July 22, 2013

Cancer tip 17


Cancer tip #17 from Beth Hiles Hearlihy
Another one --For long term in patients, there needs to be care for the caregivers. I don't know how to word it correctly, but I think the caregivers are the forgotten cancer victims.

I agree with Beth. Shoot, I’d rather be the patient than the caregiver any day. First of all I’m too lazy. Being a caregiver is a stinky thankless job. And watching the one you love have cancer is just the worst, just the worst. It’s so hard. Some places like Gilda Houses or Cancer Support Communities, or Wellness Centers have support groups for caregivers. That’s probably a good place to start. This website from America’s National Cancer Institute is pretty cool too http://www.cancer.gov/cancertopics/coping/caring-for-the-caregiver/page1. Thanks beth.

Saturday, July 20, 2013

Tip 15


Cancer Tip 15 – Get some counseling. This cancer thing is not like having the flu. It’s a big deal with lasting psychic changes – at least for me. Up ‘till my diagnosis I never had much time or use for physiologist or mental health stuff. I’m a “tape it up, you’ll be fine” kind of guy. But a holy smoke was I wrong. This whole life and death struggle, the dangerous predicaments (from neutropenia, to neuropathy), the implanting of medical devices, the self-injections, and the 50/50 survival rate for chubby middle-aged guys took my breath away. Patients and caregivers have to surrender control to a group of medical professionals they just met and hope they’re not knuckle heads. It’s helplessness defined. I can only speak for me, but I found counseling (and my teddy bear) invaluable to help me through it all. I still go to group every other week and I went to therapist a couple of times, but I had to fire him (sack for our British friends) because he had no respect for time. The point is cancer treatment and cancer survival are not do-it-yourself operations. None of us know enough and we’re all wandering blind. 

Friday, July 19, 2013

clarification about privacy


Had some questions about a previous post. Did some homework and here is the answer 

Cancer Tip #14 – Know the laws governing healthcare and privacy. AS a general rule I don’t care who knows what about me, but some people care so make sure you know what’s what. For example I talked to some HR folks and they told me that you can say anything you want about yourself – you can start a blog, a caring bridge site, put up billboards, or have a fundraiser. That self-promotion is NOT implicit approval that you have somehow given up your privacy right. IN order for employers to use your illness information requires explicit approval by you. Simply, you can talk about you all day long – they can’t unless you allow it. 

Thursday, July 18, 2013

Cancer Tip Lucky 13

Cancer Tip Lucky 13 – Don’t be stupid. Although this never happened to me, I am told that someone, after his first or second round of chemo, attempted to mow the front lawn even though his red blood cells were non-existent. His wife came out, scraped him off the front stoop, wheeled him into the house, and his next door neighbor came over and finished the job. The next day he attempted to fix a ceiling fan in the bedroom and that three-hour job lasted a week and a half. That probably wasn’t me, but pride goeth before the fall (off a ladder in my case). Damn! I slipped up; it was me. Shoot. Anyway, only push yourself to the limits of your blood counts. Remember what John Wayne said, “Life is tough;it’s tougher if you’re stupid.” At least I think it was him -- it might have been my mother after report cards.

Wednesday, July 17, 2013

A blast at work


Well, I rarely say this; yesterday was a blast at work. One of my good buddies came back from vacation, I went to a contentious yet meaningless meeting, and the overall lunacy of the people I work with was on full display. I love them all, but I am quite sure they are insane. At this moment I thank God for giving cancer and perspective.

Those of you who know me realize that I think I am wonderful. I love to go to meetings and hear that most beautiful of music – my own voice. Not only is the sweetness of my voice so soothing, I am equally convinced that the pearls of wisdom I pronounce are so full of sagacity that a scribe should follow me around and jot down my utterances for posterity.

At one of my life and death meetings yesterday I watched as lesser mortals tried to emulate my approach. If not for fire alarm caused by a faulty toaster that had – I suspect – an errant raisin lodged in the heating coil, the august gathering would have been a muddle of gobbledygook we’ve covered a hundred times with most beating the same drum they beat at the five previous meetings would’ve been uninterrupted. It was wonder in its tediousness and blather factor. And yet I just sat there and watched.

Not exactly an inspiring story of survivorship I grant you, but it was nonetheless a sublime exercise in pole-vaulting over mouse turds and new perspective. 

Tuesday, July 16, 2013

Cancer tip #11


Off to work and a bunch of very silly meetings. I have a whole lot of Monty Python silliness in me today, I may not make t through the day without being reprimanded.

Cancer tip #11. I really am surprised I have this many tips. Getting to 100 is going to be tough. Still I have a bunch more. Okay enough of that, on to tip #11. Learn everyone’s name and background. Engage the nurses who give you chemo. Find out why, when how long ago they became nurses. Talk to the food service folks find out their names too; let them know they matter. Don’t forget the people who clean the rooms; they have a thankless job and an important storey. It’s all about the lion and the mouse. Everyone matters.

Monday, July 15, 2013

six month check up resuls


He had been gone for about six months when he walked through the door of the third floor doctor’s office. Something was different, though it really wasn’t readily apparent.
The same faux cherry furniture was arrayed – that’s the best word really arrayed – in rows and boxes giving the illusion of a living room while maintaining the industrial look of the waiting room. The beige walls continued to lack the personality of anything and it too strove for soothing, as did the grey striped carpet.
No one was soothed. No one was happy; everyone was afraid or at least apprehensive. The automatic door fitted with a handicapped button swooshed and cajinged every time someone entered or left the chemo suite where all the patients were getting controlled poison to save their lives.
“I’ll be right back,” he told his wife as he walked to the suite carrying a dozen donuts.
“My God. How are you?” asked Dawn the head nurse of the suite who reminded him of a Hispanic Farah Fawcett with full head of frosted blonde hair falling in a controlled tumble.
“I’m fine,” he said. “I’d like to say I miss you guys, but that would be lying.”
“I understand.”
“I just wanted to drop these by.”
“Thanks,” she said. “We appreciate it.”
He scanned the room. The industrial blue steel framed recliners he remembered were all there and unfortunately occupied. Blood was being drawn; chemicals added to IV’s and nurses speaking in hushed tones. Less than 29 months ago he knew all the patients, all the nurses, was a member of the family. Now he looked and to the new patients he was either an intruder or the future, a goal they aspired to or a lament they dare not discuss. He was a survivor.
“I have to go,: he said feeling as an outsider and a member somehow all at the same time.
The nurse called his name before he could sit and he walked to the phlebotomy area for patients without ports, catheters, or lumens. They drew five vials from the huge vein in his right arm and sent him back to the waiting room.
In the faux cherry chair he waited with his wife. His stomach churned as patients – one after another – went to their appointments. One minute turned to five, which turned to ten, which turned to twenty, and finally to thirty when the short African-American aide, Nicole, called his name. He jumped up, walked quickly to the door, and for a minute forgot his wife was with him.
Every time he saw Nicole, he remarked that she looked thinner and her new hair style was a great fit. In the pas two years the aide had neither gained nor lost a pond or changed her look. She always smiled and said thank you, thinking he was scared or nervous or both.
She was right.
Every time he walked through the door to the examination rooms he felt like he was choking. He made idle conversation, talking way too fast.
When they got to the examination room he made a beeline for the blood report. It’s why he was there; everything was secondary. In two years he had read enough of his own reports to know good news from bad and dangerous from safe.
He looked for one of three things next to each entry: a blank meaning normal; an “H” meaning high: an “L” meaning low, or a “C” meaning critical.
First things first; there were no C’s. A couple of L’s and a pair of H’s. Where was it? The one thing he was looking for.
And there it was. Platelets. For more then 18 months his platelets had never been above 100 and today they were 130. “Yeah baby yeah,” he shouted as he ineptly moved his 55-year-old body into a very bad moon walk.
“Honey! Platelets – 130.”
“Yay,” she shouted.
The aide got all caught up in their enthusiasm and said, “That’s great. Way better than last time.”
The good news just kept coming.
The scale showed a drop of seven pounds and he was as happy with that as he was the blood.
“Okay Lori (nurse practitioner) will be in and then Dr. Martin (hematologist),” see you in a few months.
The husband and wife glowed in the same kind of intimate way newlyweds did the day after.
“I just might live through this,” he said.
“You just might,” she said almost giggling.
Lori came in probed, questioned, and took notes.
“Your red blood is a little low, but hemoglobin is great so everything looks good,” she said. “See you in a few months.”
Dr. Martin a thoughtful graying man in his early sixties or late fifties came in wearing his white ubiquitous lab coat.
“Everything looks good,” he said. “You are in a category now. Two years past diagnosis and everything is still good. I think we will see you again in six months.”
The three were elated.

Six month follow up and tip #10


Well I’m off to my six month follow up. I’m always a bit angsty on these days. Not so much about cancer, but I’ll have to get on the scale. Yikes! Okay the cancer stuff freaks me out too. 
So far I’ve been asymptomatic and it’ll probably stay that way. I don’t feel any cancer and I haven’t been nauseous. So all is good. I bet my platelets are still <100,000. Even so that’s good. I’m hoping for a "see you in a year” follow up. 
I was thinking about going to the chemo suite to say hi, but I need to stop and get some donuts for the ladies and whatever poor bastards are hanging around having poison drip into their veins. The good news is that the chemo patients won’t have any appetite so a dozen donuts should do it. 

That’s it,
Bill



Cancer Tip #10 – Start a blog. Either Caring Bridge, whatever the hospital might have, or go to blogspot. It’ll save you a lot of time telling the same story over and over again. Type it up once a day and everyone is informed. While you’re at it establish “office hours’ so people won’t be bugging you when you nap. Post hat on your blog. Email the address and/or login info to everybody that needs to know your business. 

Saturday, July 13, 2013

tip #8


Cancer Tip #8 – Study. Learn the language. Having cancer – especially Burkitt’s – requires rapid immersion in a whole new world. There is almost no time to ponder, to consider, to digest. It’s like being an immigrant to a country and not knowing the language, but you have more to figure out than how to order a menu item at Mickey Dee’s in a new language. The easiest way to start is to Google everything and go from there. Think about it – Hickman, catheter, neutropenia, Absolute Neutrophil Count (ANC), and hat is just the medical lingo. There insurance, employers, state and federal law; and blah, blah, blah. I’d recommend going to www.liverstrong.org and sign up. I know. I know. Lance Armstrong is a bad man. I don’t care if the guy sold crack in the churchyard, those Livestrong guys do a helluva job educating people. Being lymphoma folks don’t we want our advice from a bloke who knows how to manipulate blood? 

Friday, July 12, 2013

tip and death march


Here’s the stupid ting I did yesterday. Lately I’ve been going on walks/runs with one of those surgical tubing exercise band things. At the end of every song (I am also wearing my Ipod) I’ll stop running do some push ups or use the exercise bands. I’m figuring that’s getting easier so I should move up to a couple of ten pound weights. 

Yesterday I start out on my two and half mile loop and begin my thing. It becomes apparent pretty quickly that walking around with these weights is kind of hard. so I start doing curls while I’m walking, some lateral raises, and other little oddities of self-sadism. Once I throw in some leg lift after every song I’m working hard. The sweat is drenching me and this small walk turns in to the Bataan Death March. 
I feel like the legionaries from Beau Geste.  I can hear Telly Savalas yelling, “March or die.” 

After almost and hour and ten minutes I make it back to my starting point. Go up to my office and collapse in my chair. 

Well, after this bout of silliness, I decided the only thing worth doing now is undoing all the hard work by overeating at dinner. Two cheeseburgers and two hot dogs later. I’m in my recliner all roly-poly, watching Big Brother. 

Today everything aches. Oh well 

Cancer tip #7 -- GOYA (Get Off Your Ass). AS miserable as you may be or are gonna be., Get moving. Drag you and your IV stand down the hall of the hospital and make a spectacle of yourself. It’ll help you in your recovery later. If you don’t do something to get a little exercise you’ll start obsessing, become lethargic, and this damn cancer will start to thing it’s wining. Is It hard – You bet!! It’s better than lying in bed though.

Thursday, July 11, 2013

Tip 6


Wassup Guys:
Things are going great. I’ve been trying half-heartedly to get an adjunct teaching job. I’d like a little cash. I’m heading to Seattle in September and I want to spend like a drunken sailor, but money is getting a bit tight. OH well it’s not the end of the world. 

Played golf Sunday and it was sweltering hot. I had to swallow my massive male ego and quit after nine holes. The older guys I play with were kind and didn’t make fun of me. Better to be humbled than stupid I guess. 


Tip #6 – I didn’t realize I had this many. Okay Tip #6. Keep two bags packed at all times. One will be your “Gosh Darn It I didn’t Plan To Go To Hospital Today” bag and the other is your “Outpatient Chemo” day trip bag. Have everything ready for a week long unplanned hospital stay packed up. You know, undies, pj’s, books, secret blankies nobody knows bout – that kind of stuff. Once your “Gosh Darn It” bag is packed take it with you while you are getting chemo to every doctor’s visit.
In your Outpatient Chemo day trip bag, take snacks you can stomach, your Ipod, books or magazines, some cash for the lady with the snack cart, and other toys. Take a cell phone for the stay that goes extra long and you need a new ride. 

Wednesday, July 10, 2013

cancer tip 5

Not much to tell today. her’s your cancer tip.

Anyway Tip #5 -- Build a Binder -- Get a three ring binder (maybe two) end a three-hole punch. Keep everything somebody gives you about insurance, treatment, or disability. I filed my chronologically. On the inside cover over of your binder tape whatever referral system your primary care doctor uses.

Tuesday, July 9, 2013

Tip #4 and Dentist


Tip #4 – For those of us that deal with health insurance. Most insurers have a case management office that handles dangerous illnesses like cancer, heart disease, and etc. Call your insurer and ask about being case managed. Because Burkitt’s requires aggressive chemo, there are unscheduled hospital trips that will require more agility than a hulking bureaucracy can usually handle, Asking for a case manager seems to alleviate a lot of this.


Vini, vidi, vici. That’s right I’m bad. Went to the dentist and all I need is a crown for a damaged tooth I’ve had for a hundred years. Yeah baby. My pearly yellows had a small bit of tartar, but the gal said great for a guy who had been away for two years. The scraping, gouging, and picking didn’t cause a lot of bleeding either. all-in-all a day of 4.5 chemo bags. :) 

Monday, July 8, 2013

I’m back


I’m back, mostly. Got me and unbelievable dose of hay fever. I’m miserable. But that’s cool. Off the dentist today for the first time in two years. I am so excited. I wasn’t allowed to go when I was sick, but here it is -- the whir of the drill; the chip, chip, chip of the cleaning thing tool against my tartar, the inevitable water-boarding about flossing, and the new toothbrush. Yay!!

I am very excited. There is an unescapable symbolism with this act of mundanity. 

Here’s your tips.

Tip #2 – Only wear t-shirts with pocket and wear them inside-out so you stuff your catheter lumens in the pocket so they’re not jangling and tugging on stuff.

Tip #3 – For PICC lines Instead of gauze get some old athletic tube socks and cut off the toe and slide that up your arm to secure all the tubing. 

Saturday, July 6, 2013

today’s cancer Tip #1


Tip #1 – Take a tape recorder to your first oncology appointment, The information comes so fast it is impossible to take it all in the first time around. The doctor won’t care – he’ll probably appreciate it.