Top 75 Cancer Tips for Burkitt’s Lymphoma, But You Can Use Them for Almost Any Cancer Journey. Really You Can
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.
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.
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.
Tip #5 -- Build a Binder -- Get a three ring binder (maybe two) and 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.
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. In you “Gosh Darn It I didn’t Plan To Go To Hospital Today” bag have everything ready for a week long unplanned hospital stay. You know, undies, pj’s, books, secret blankies nobody knows about – 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.
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.
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, or 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 that 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?
Tip #9 For the girls. Make sure you lift up your shirt and free your bra from being restrained from your IV when you get admitted. This will allow you to change your clothes freely without having them come in and plug the line for a few minutes. Make them add a coiled line to your IV tubing so you can move around your room, go to your bathroom, without dragging your pole with you.
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.
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 story. It’s all about the lion and the mouse. Everyone matters.
Tip #12 Bring a foam mattress cover to 1) make the beds much more comfortable 2) keep you from sweating on the plastic beds. The hospital staff don't really like it, but if you give them some puppy dog eyes or a real dirty look they’ll give in.
Tip #13. Have your mom there so she can drop the F bomb when the chair keeps flying back into the wall every time she goes to sit on it. It adds a lot of humor, especially when nurses are in there trying to get meds ready and she goes flying for the fifth time that day.
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.
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 physcologist 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.
Tip #16 – Okay first things first. Starting Monday its guest tip week. A lot of you guys have sent me tips. And I’ll post them next week. This is kind of fun. Thanks for bearing with me. It’s not like I know anything, but still … you guys are very indulging. On with tip #16. As your taste buds change, deaden, or whatever you want to call it, you will discover there are certain foods you once loved, but now are ambivalent toward (for me it was chocolate). You may find there are only a handful of things that are palatable so experiment and find out what you like. For me it was, Honeycomb cereal, hotdogs, Powerade, Pizza (the local pizza joint is still on my speed dial), and of all things – egg salad sandwiches. Just about everything else was blech, yucky, stinky. Anyway you may find you like new things. As a general rule I’m not a big fish eater, but when I was sick fish with lemon was pretty good – not as good as grilled cheeseburger, but still good.
Tip #17. 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 . 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.
Tip #18 – Here's one that might just be rather exclusive to my experience, but it might help somebody: "Don't wait weeks to look in a mirror." I thought I had survived a secondary disease that caused aging of ten years over two months...I got over it, but it was a bit of a shock.
Tip#19 – While in the hospital, 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.
Tip #21. 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 …
Tip #22. 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.
Tip #23 – 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.
Tip #24 – Develop a system to remember what drugs you took. Those little trays with Monday, Tuesday, Wednesday, etc. 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.
Tip #25 – 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 one 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.
Tip #26 – 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.
Tip #27 – 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.
Tip #28 – 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 made 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.
Tip #29 – 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 out 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.
Tip #30 – 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 is 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 you have to slowly and painfully shuffle away. Don’t skip because you bilked someone out of a free donut. It’ll ruin it for the s rest of us.
Tip #31. 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.
Tip #32 – 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 can 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.
Tip #33. Bring a supply of birthday cards. One can never tell.
Tip #34. Puzzles books and crosswords. You’re gonna be there for a while and some of that time is spent alone, so puzzle books and crosswords can be a big help
Tip #35: 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.
Tip # 36 There was something about Burkitt’s I really liked besides the weight loss. Okay it’s disgusting, but it’s true. Ready. You know how you have to use a urinal for all the measuring they do while you’re in the hospital? And you know how you sometimes get a private room if you have neutropenia? Well during football season I never missed a play when I was in the hospital because I … you can guess. My wife said I couldn’t do it at home – especially now. Damn!! The good old days.
Tip #41. Big boy stuff. Make lot’s of copies of your living will and bring them to the hospital with you ever time. I’m not 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.
Cancer Tip #42 – 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.
Cancer Tip #43– I hope this isn’t too controversial, but I’m gonna talk about religion and/or spirituality. Be specific in your 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.
Tip #44 – Be prepared for angels. I believe in angels. Here’s what I think happens. The Supreme Being, Ultimate Reality, God, or whatever you want to call it/him/her (I hesitate to use personal pronouns, but language is insufficient) visits us through people. Anyway when you are in a moment somebody will say something profound to you and if you are prepared to receive the message, you will interact with an angel. Here’s what I mean. I was walking out of Wawa (a local convenience store, for those outside of Pennsylvania, Maryland or Delaware). I was feeling down, but I opened the door for this fellow and gave him some standard greeting of the day and he replied, “You should be thankful, some people don’t make it as far you have. There may be things you can teach others.”
I was stunned; stopped for a minute and then went to find him – he was gone. It happened as fast as you just read it. Nobody moves that fast. I believe it was an angel. Here’s the thing – I think we are angels too and might never know until we look back and think, “Why did I say that, or do that?”
Tip #45 – Send your caregiver home. Caregivers don’t be guilty. Cancer patients are a pushy bunch and can get all wrapped up in being sick. Caregivers don’t know this, but we patients receive special instruction on being pains in the ass (what do you think is in all those self-help books we read). So the point is caregivers can only take so much without some personal preventive maintenance, so it’s up to the patients to make sure the caregiver doesn’t get sick. On a slow night send ‘em home or to a hotel. When you caregivers get a night off, do something relaxing or fun and don’t feel guilty. We need you in the fight (even soldiers get passes).
Tip #46 – 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 your cancer journey. It would sure be sad to make a life threatening permanent decision to a somewhat temporary problem.
Tip #47 – Crocs is good shoes -- for the cancer ward. If you’re a wanderer like me, you’re gonna need some easy-on, easy-off footwear for your jaunts through the hospital. I always wanted to get a white lab coat that said “patient” on it and see how far I could get – the goal always being the coffee kiosk in the lobby. Anyway the Crocs are good because they prevent falling on your buttocks on the slippery floors, they have a pebbly bottom that kind of massages your feet (it’s neuropathy thing), and they are pretty durable (I wonder where mine are? Oh that’s right, I threw them out in an “I don’t have to go the hospital anymore ceremony.” Not only that they’re pretty inexpensive and quite fashionable.
Tip #48 – Instant Coffee is good. I loved my nurses and they were so kind to me and brought me coffee at strange hours, but they have better things to do than play room service for some 54-year-old crybaby. There are real sick people in these cancer wards. So I wandered about and discovered that the Bone Marrow Transfer Unit had one of those water coolers with the hot/cold spigots. That brings us to Starbucks Instant Coffee. It is excellent. For our non-U.S. friends I don’t know if you have Starbucks, but I am sure there is instant coffee in South Africa (probably delivered by lions), and aboard local carriages in Australia (trains I think). The point is, as you are wandering about the cancer ward begging for donuts you might as well grab some hot coffee on your own, especially if the nurses are too busy saving lives to wait on you.
Tip #49. 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.
Tip #50 – 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.
Tip #51 – 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.
Tip #52 – 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. People who have never been caregivers, don’t get it. They don’t understand. I prefer to 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 new slate 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
Tip 53 – Contact info. Pestering people 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). .
Tip # 54. Know what an emergency is. An emergency can mean different things depending on where you are on the journey – so know what one is and know who to call when you have one.
Tip #55. Know how your phone works. Some doctor’s use a service after hours and may ask you turn off the call waiting on your phone before the doc calls back. Not knowing how to do that can make emergencies hard to hndle.
Tip #56. Adult patients have a lot of info they need to share --- so Caregivers need to 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.
Tip #57 – It’s important for caregivers to list questions and them bring ‘em with you and write the answers down in your decorative cancer notebook. We all know that, but 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. .
Tip #58 – 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, 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 remember I almost died from infection and blah, blah, blah. 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 came from, but that’s how I feel.
Tip #59 – As you know the Army problem solving method is “identify a problem, build a binder.” While I advocate stuffing everything in a binder, the patient should prepare and update weekly a special caregiver binder with the following stuff:
An updated list of medicines, dosages and times taken -- this includes the stuff you take at home, the crazy herbal stuff your aunt is making you take, and all the chemo drugs as well; a complete list of contact info; a living will or what every you want in case you can’t communicate; a power of attorney; insurance policy numbers (life and health); all those release slips the doc send home with you.
Tip #60 – Caregivers – Be on guard and don’t ignore your own needs. The sicker your patient gets the more your needs increase. Remember, it is more likely than not that your patient will get miserable for a period of time and having a half-dead caregiver doesn’t help anyone. The most common signs for caregiver burnout and fatigue are: Fatigue, Guilt, Anxiety, Stress, Frustration, Isolation, Depression, Anger, Resentment, and Illness. (As I look at these, it seems like a pretty standard day in Caregiver-land),
Tip #61 – Let’s start from the beginning chemo sucks when you’re going through it, but you might get a lifetime gift from it too. Chemo Induced Peripheral Neuropathy! Yeah baby. The symptoms are miserable and they include: a burning feeling in you limbs (and everywhere else for that matter); numbness, stabbing pain (when not numb), pricking (what ever that is), tingling, sharpness, shooting, and electric shock type feeling in extremities. But wait there’s more! Apparently this little gift can come with a healthy dose of constipation too – aren’t cancer patients lucky (and apparently full of sh#@T). Mine is usually worse if the lawn needs to be mowed, my lovely wife wants to go purse shopping, or there is a good football game on TV.
Tip #62 – Recovery stuff. Since I lost my neuropathy notes and the Internet is full of stuff here ‘s a link to the mayo clinic -- http://www.mayoclinic.com/health/chemotherapy-neuropathy/MY01327. Okay maybe I should’ve held the mayo (heh, heh). Oh god I love “Airplane” humor. One question -- why does the spell-check make you capitalize Internet? How did that become a proper noun? I digress.
Tip #63 – Recovery from Burkitts is an intensely personal thing. Just because I can or can’t do something doesn’t mean that you can or can’t. It’s just one of those weird things about this. For example I am 50 er, ah, um something years old and had a very active lifestyle before I got sick. My start point was stage two with a bowel resection. I could only withstand six of the eight rounds of hyper CVAD and blah, blah, blah. The point is my starting point, damage, and approaches are mine. A 50 – something year old will have different effects and long-term side effects than a 60 – something, or a 40 – something. Even so there are still some things we can share. More Monday.
Tip #64 – I thought we’d do well to define “Recovery” before giving tips about it. Think Recovery is a continuous individual process that attempts to return a Burkitt’s Lymphoma patient to a quality of life that allows him/her to pursue happiness within the confines of their new physical and psychological condition. Recovery begins at diagnosis and lasts for the remainder of the patient’s life.
Tip #65 – Now that we’ve defined recovery and have common language here’s the tip -- Be violent in your execution. Whether you goal is to walk to the stop sign a block away, or as time goes on run ten miles – dedicate yourself to doing it. Nothing can stop you; you must have a ludicrous drive to get there. It doesn’t matter what it is. Be insane about taking the trash out, or washing the kitchen floor (men’s work by the way), whatever it is. Nothing can stop you. Remember the goal you set for yourself comes from within and each one is just as Herculean as any other. One of my was mowing our tiny front lawn – it was a big deal to me (my wife keeps asking me to do it again, but I already was successful at it – no need.)
Tip #66 – Do an inventory of you. How beat up are you from your cancer treatment? What are your limitations? What still works pretty well? What doesn’t works so well? Is there anything you can fix? Do you want to? For caregivers – same thing.
Tip #67 – Don’t rush back to work. If you can afford it, return to work with the same enthusiasm of a dog going to the vet or a cat taking a bath. If I had to do over, I would have stiff-armed my return by a couple of months. I wasn’t ready. Even though my job has been very supportive and I felt a moral obligation to get back as fast as possible as symbol of returning to normal – I did it too soon.
Tip #68 (Recovery) Stash some money away to cover federal income tax. This is one of those “Do as I say. Not as I do.” Tips. If your employer has a disability policy and you go out on short or long term disability, be advised some insurers DO NOT withhold income tax. I dropped the ball here and it cost me a bit of cash just as I was coming out of my cancer haze and returning to work. Even though most disability insurance is woefully inadequate to cover lost wages, the tax bill can be shockingly high.
Tip #69 – Get in shape if you can. Referring to tip 66, Set up a plan to get yourself back in good enough shape to do the things you want to do. This can be ridiculously hard, but it’s gotta be done. Want to go fishing and need to walk two miles to get you your fishing hole? Slowly work up to it. Important note – make sure platelets are sustained at 50,000 before you do anything too crazy. Although normal platelets are 150,000, I think we all threw normal out the window a while ago. Safe – for exercise – is 50,000. That’s what Lance Armstrong says – he’d never lie.
Tip #70 – Forgive yourself for the emotional outbursts you’re gonna have at work. This goes for caregivers too. When you go through this and return to work, you’re gonna realize that a lot of what you’re doing is way less important than ti once was.
Tip #71 – Comedy is easy, sex is hard. Don’t let a bad sex episode get in your head. All things in time. I guess I can only speak for balding quintogenarians (I just made that word up), who likes pizza too much. Sex, while important, is pretty low on the laundry list of things to worry about as you battle through the haze of residual side effects. As you all know side effects can hang on for a while, so be patient. I have a lot of stupid jokes, but this is too important to be glib about. Okay never mind, remember like anything else, practice makes perfect.
Tip #72 (recovery) – Prepare for a bit of sticker shock. Unless you’re a member of congress, or live in a country with a single payer health system, sooner or later you’re gonna: a. find out how much your hospital charged your insurer, and b. you still owe some money.
Hopefully your out-of-pocket costs won’t be too devastating, but between that and lost wages you can go through money faster than a drunken sailor on shore leave and not have a tattoo or social disease show for it. Stashing money aside is virtually impossible too due to copays, bills that don’t go away, lost income and blah, blah, blah. Just relax and do the best you can.
Tip #73 – Beware Maslow. Maslow’s hierarchy of needs is real. In the midst of the cancer fight you have a certain clarity about what’s important and what isn’t. As you move further away from the chemo and things become fuzzy you may start to drift back (or forward, I’m not sure) to different priorities forgetting some of the “stop and smell the roses” lessons you once embraced as a newly minted survivor. I’m not sure if it is good or bad, but it can happen.
Tip #75 – Expect pain. Okay here’s the thing. Depending on what operations you had to save your life and how fast you went into chemo afterwards things might not heal as optimally as you a person who didn’t have chemo injected into the recovery process. For that reason there may be residual pain for a while. I understand it is also very common for hernias to develop at or near incision sites due to chemo immediately after surgery. I suspect it has to do with platelets, but I’m not sure. It mostly goes away after a while.
© 2013 Compiled by Bill Potter with suggestions from survivors and caregivers at the Burkitt’s Lymphoma Society Private Facebook group and the Burkitt’s Lymphoma Support Group also on Facebook