Tips For Survival

Post a NY Times post…

What a rush!! For almost a day I was famous thanks to all the great comments on the NYTimes.com essay : When Cancer Changes Your Appearance. I was humbled by the response, and filled with joy at the thought that my story helped others. Thank you.

One friend suggested I share my patient experience with those for whom illness and/or the medical system are relatively new and consequently monumental. There is a lot that I could waffle on about, but I’ll try to keep it usably concise.

The diagnosis: the doctor tells you that you are actually quite sick. Alarm bells go off in your head, your emotions trigger an instant need for oxygen or a run to the bathroom, and if you were asked what 2 + 2 equals you’d probably say, “milk!” As the doctor continues to talk, your otherwise together self dissolves into an emotional mess. So take a friend, spouse, relative with you to act as your support and to take notes. My wife Diane has done that for me throughout my medical mishaps - her notes and sense have proved invaluable.

Next stage: you’ve got the problem - how do you solve it? You feel like you are facing Mount Everest with one crampon and a goat. You want the best advice possible, but where is it? There are so many ways to find information. Burying your head in the sand isn’t one – this is where and when you start preparing for the fight to come. I suggest you ‘network’ your way to the best solution. Email and/or call all your contacts and ask if anyone knows anyone who has had your condition. Ask all your doctors whom they might recommend. Once you’ve got a few names, look them up on line – or get a friend to – to learn more about them.

Beth Israel (BI) Med Center’s Head and Neck Center for Cancer has treated me for 4 years. I found them because the wife of a fellow Master’s program graduate worked at Cancer Care (www.cancercare.org a great resource for all kinds of cancer information.) Her boss was the wife of the head of BI’s program. So through them, I called him. It was an encouraging conversation. I verified the excellence of BI’s Head & Neck cancer treatment by talking with several independent oncologists. I met with Dr. Persky, an oncologist there, and was again reassured of the high quality of their service. My original diagnosis had been done at NY Presbyterian Hospital, however their program wasn’t cohesive enough to meet my needs. I also discarded my other choice, Memorial Sloane Kettering, for their tendency at the time to treat patients like numbers, which I got from patients who were currently being treated there and I am definitely not a patient who tolerates that style of treatment.

Treatment: Like preparation – research your options. Get second opinions before you plunge ahead. Your insurance company should allow this and doctors encourage it. You shouldn’t feel that you are betraying your current doctor by “going behind his back” for another opinion. Either you will find a difference of opinion, giving you cause for further preparation, or you will be reassured that you are on the right course.

Tips during treatment:

• Have your medical history prepared and ready. Yesterday we were behind a woman who had just handed in pretreatment forms that she thought she’d filled out correctly. The receptionist said nicely, ”no dear, you’ve got to fill out this, …and this, …and this top part only, and all of this page, then you must sign and date here, here and here, OK?” as she flipped through what resembled the next Harry Potter novel. The woman’s jaw just dropped, it was deer in the headlights time for her. In order to cut through much of what she was facing, I suggest you summarize your medical history in a short form. (You can take a look at my medical history form as an example. It should include the dates of injuries, diagnosis, surgeries, the hospital of doctor involved; plus a summary of your current conditions; a list of your medications; and a list of your doctors with their contact numbers. This will help more than you can imagine when you go to a new doctor, go for a scan, or go for surgery etc. Just submit this with the forms they give you and scrawl (with glee) “see attached” on their forms.
  

• Always take something to pass the time – a book or iPod is my preference. You will run into delays everywhere in the medical system, especially in the emergency rooms!

• If you get nervous about tests, let your doctor know and be clear about it. It made a big difference when my doctor gave me a prescription for Atavan (or the generic Lorazepam) the anti-anxiety drug. I am claustrophobic so I always take one before PET/CT scans and MRI’s as the machines are very close.

Insurance issues: when you get your diagnosis, call up your insurance company to find out how they deal with your problem.

• Are you going to have to get referrals to every doctor (usually ‘’yes” with any HMO.)

• How can you see someone who’s “Out of Network?” This is not impossible, but you will have to convince the insurance company that this doctor is unique in his ability to deal with your problem and that they don’t already have such a specialist on their list of approved doctors. The specialist you want to see will usually help you try to win this argument.My kidney and pancreas transplant was “Out of Network” in Pittsburgh, PA. I petitioned beforehand with Oxford and succeeded to gain approval.
  

• Also one doctor at at center may not take your insurance (Dr. Persky didn’t take mine) but another at that center may (Dr. Sessions did.) So keep pressing until you are satisfied.

• Try to pay your co-pays at the doctor’s office the day you visit. The way some insurance companies present bills for co-pays can be very confusing, and they are often wrong. So try to keep your records sorted, the paperwork you might receive could be overwhelming if you don’t.

• If you get a denial for coverage from an insurance company: fight it!! Like a parking ticket in NYC. Insurance companies lean towards using “denied” often, and often on wrong information.Call the insurance company, if you don’t understand something on your statement. They can be very helpful in explaining, and can often correct mistakes they’ve made over the phone.
  

Preparing for surgery: I believe that relaxation and positive thinking are absolutely necessary for you to recover quickly and with the best of health. I recommend Peggy Huddleston’s “Relaxation and Healing” (available on amazon.com) which I listen to for at least a week before surgery and for several weeks after. She uses a positive imagery (I like to envision Cape Cod sand dunes, the rustling dune grass, and the ocean) to help you relax and visualize images that help you feel good.
She also recommends you talk to your anesthesiologist before the surgery to ask her or him to literally whisper sweet, positive images as you go under and the same again as you come out. I love the conversation I have with them just before surgery – “Doctor as you knock me out and also as you bring me back, could you please describe Cape Cod sand dunes, and the wind and sea, saying how good this surgery will be, and how well I will recover afterwards at the same time?” Usually the anesthesiologist pauses, “…uh?” and I get the surgeon, who likely as not has already heard me ask this before, to pitch in on my behalf. It’s fun to spin it out a bit! But I swear it works!! In the past 10 years I’ve had about a dozen surgeries, 3 which lasted over 10 hours and one of which was 17 ½ hours and my recovery is always remarkable and, oddly, with very little pain.

In hospital: Be as nice as possible to everyone, absolutely everyone. The nurses work extremely hard and are the center for everything that happens in your room. They all have names, it helps if you get to know them and use them. Diane, God bless her, stays with me all the time, sleeping over in the reclining chair or, if we are lucky to find one, a cot. She helps by getting clean linens and making the bed etc. Just as with the “cable guy” in my early post, the nurses love the help and we get great attention when it is really needed. Diane’s staying with me helps me recover quicker too.
In hospital too: check your meds! Despite their best intentions, the doctors and nurses can mess up your meds, especially if you’re already taking some prior to admittance.

That’s all I can think of for the moment. To be a successful patient you have to be determined to beat your problem and to do it with a laugh and a smile on your face! So have a great day! Yep, because it is a great day!

"I Am A Doctor!"

“I Am A Doctor!” spoken with true authority that momentarily confused me as it was coming from our cable service technician last Friday at the beginning of a visit to clear up our perpetual TV and internet problem. (Does anyone not have a perpetual cable problem?) The odd thing about this statement, besides the obvious, was that it came just after he pronounced, “I don’t want you too close to me.”

Apparently he believed he was the “Cable Doctor,” and he also thought I would spit on him and infect him with my disease. He wasn’t the most charming of people. When Diane opened the front door at the top of the stoop in answer to his knocking on the gate under the stoop, he barked: “why does it say basement?” (On the Time Warner Cable account – who knows?!) Then he said, “You don’t have dogs!?” She reassured him we didn't and he entered, only to be confronted by a stooped, swollen headed, man who breathed through a hole in his neck and was dressed like a samurai on holiday. To further his unease, I started talking to him – apologizing for my terrible diction and unintelligible voice (an unfortunate and unintended result of my cancer.) When he responded, “ why doesn’t she interpret?” I naturally started to don my ‘kill the technician’ armor, preparing for a loud but unintelligible assault on the jerk.

Diane realized that I was about to sink our chances of ever again receiving my daily salve, the BBC America channel, and hastily cautioned me that “now wasn’t the time.” I disagreed and by nods of the head and hand gestures we commenced to argue, which luckily I lost. Diane talked with the tech, listening to his fear of contagion, fear of my spitting on him, and correcting him about my medical condition and my ability to spit. The contrite tech then confessed that two of his close relatives had died from cancer and apologized to both of us. I accepted his apology instead of lopping of his head and, of course Diane was right, and he redoubled his efforts at perfecting our service going above and beyond.

How does one deal with someone whose appearance has changed from the dashingly handsome, ok I’m taking some poetic license, to totally disfigured and, one might say, grotesque. We’ve been trained by movies and TV to worship perfection. After all the bad guy is always either bald, short, limps, is missing an eye, scarred or has some other abnormality to distinguish him from ‘us’ the perfect audience. My close friend recently told me he was “shocked, I tell you, shocked,” by my appearance when he saw me again after 6 months. I’m shocked sometimes too.

It’s as much a learning curve for me as for others. I am not sure how people will take me: whether I’d make them uncomfortable, whether they would be able to overlook the changes and look for the person who still inhabits this misshapen head. I have to talk myself into going out now. A little pep talk reassures me that, whatever others may think, I must not quit without trying. My difficult speech has similarly influenced my choices – I tend not to answer the phone and am now a listener in group settings, only lobbing in a few bon mots every so often, and then re-lobbing them until people understand. My timing is truly unique. To combat the verbal steamrollering of members of my family I raise my hand before speaking. Quite humiliating, sort of, but very effective!

What do I want people to do? I want everyone to feel comfortable around my appearance. Don’t worry that you have to address my illness in a compassionate way, or at all. Just say what you want when you want. I’ll let you know if you offend, or if I need something. What I enjoy most is watching others enjoy themselves. My friend Steve said “well, you’ve got that portly Asian look down now,” and that was nice, funny and quite off the cuff. It made me feel that I could relax and not worry that the conversation was going to slide into the Grand Canyon of medical awkwardness. My neighbor’s 3-year-old daughter treats me just like everyone else, someone to flirt with! So if you see a slightly hobbled, melon headed, man wearing a hat, walking with a stick towards you just say, “hi, it’s a great day! Isn’t it?” And I’ll say, “yep, it’s a great day!” and feel it too.

A Gardener's Friend

Federico Garcia Lorca - our garden Praying Mantis! Lives a romantic, violent life - keeping our roses beautifully clean of aphids and a watch on us as we potter around. Almost contemplative in his devotion to aphid cleanliness, Federico knows he is le boss des Mantides, for he is at the top of his game - having probably eaten all his competitors. Caught here, briefly, claiming the Lilac bush as his/hers? (Sorry, couldn't tell which.) We are proud of our Federico.