From Stacy Gladstone

I'm one of Brian's friends from college and Champlain Shakespeare Festival days. I have so many memories of Brian, but two specific ones make me smile whenever I think of them. The first was the summer of 1979. We were doing Measure for Measure. He was Claudio and I was Juliet. Our director had chosen what she called "Gothic Futurism" as the concept for the piece. Those characters who were the greatest sinners were slathered in gold makeup. Brian and I were doused in it. The prop baby I was given at the end was a block of wood covered by silver metallic cloth. I was miserable and Brian knew it. During strike, as a gift to me, he hung this prop in effigy.

The following summer we did A Midsummer Night's Dream. Brian was Lysander and I was Hermia. The final night of performance the actor playing Bottom decided to do a bit of ad-libbing. Toward the end of the play, when we were asleep in the forest, our Bottom said "The eye of man hath not heard, the ear of man hath not seen, the feet of man hath not smelled...nay feet do smell a little..." and I began to vibrate with silent laughter. My movement threatened the verisimilitude of the scene so Brian tightened his grip on me and, through clenched teeth, as quietly but as intensely as he could, whispered "Stop It, Stop it!", until he just gave in and silently began to laugh with me.

From Dr. Cori Torres

I was struggling with the business end of running my office- well trained as a doctor, no training as a business owner. Brian offered to come in and have a look around to see if he could make some practical suggestions for me.
He took a critical look and pointed out all the things I could be doing better; things I had never noticed or thought of. It was a bit painful to be faced with that reality but I was grateful. He then asked to take a look at my patient scheduling software. I showed it to him, explaining the problems I was having using it. He brought the program up on the computer and starting messing around with it. After a couple of minutes he said, "Oops." I said, "Oops what?" He said, "Oops, I believe I've deleted all the data in this program. Sorry about that." I was never able to use that program again, but it turned out to be a blessing in disguise- it was an awful program and I got a much better one with Brian's help.

Several years later my son was in the hospital having major surgery and he ended up needing an emergency tracheotomy. I was devastated and my son was struggling to handle not being able to talk. Brian had a trach not too long before this and he and I had talked about that experience. I knew how well he handled all of the invasive medical procedures he had experienced. I called him from the hospital to ask for his help with my son, and he and Diane immediately showed up at the hospital. Having them there gave me more comfort than I ever had a chance to express.

The day after he passed away I was in my office working when I got a phone call informing me of his passing. I had patients in the office but needed to take a few minutes to compose myself and went an empty room and closed the door. When I came out, I went to my patient appointment book to re-orient myself. Something toward the bottom of the page caught my eye and I did a double-take. There at the bottom of the page was the name "Brian Nelson". I stood frozen where I stood. Brian had been a patient in my office, but not for quite some time. I looked again and saw there was a patient named Brian and a patient named Nelson coming in one after the other that day. I truly believed in that moment that it was Brian's way of saying "hi" and giving me a laugh. I somehow felt in that moment that he was okay and I should not be sad.

It is hard not to be sad, just because there is now a significant presence missing from this world. Knowing Brian was a privilege. And Brian, I'm sure you're reading this, so I just want to thank you for everything- thank you for letting me know you in whatever small way I did.

From Heather Reardon

I will always remember the first time I saw Brian. We were walking to Special Olympics basketball practice, and he was by Diane's side wearing a hat. He looked as if he was from a classic era.

It was so nice to watch their relationship evolve. He was witty, intelligent and charming. They were a perfect match.


Heather Reardon

From Liz McGlinchey King

I was college buddies with Brian, we were in the Champlain Shakespeare Festival together for a few summers, and we were friends in New York in the early 80's. My husband, Ron King, and I have many happy memories of our friendship with Brian, but two stand out very clearly for me. One was when we performed Cabaret as a college production in 1979. I was the piano player and terrified because I was used to being behind the scenes, but in Cabaret the musicians are characters in the show. Each night Brian escorted me to the piano, staying in his character. When I put my arm in his, he sensed my nervousness. He'd tell me it's going to be OK, you're going to be great. Another memory I have thought about hundreds of times in the past 30 years was something he said after my brother died during our college years. When I returned to college after the funeral I told Brian that everyone seemed to be going about their lives as if this awful thing hadn't just happened to me. He said, "Liz, people with laugh with you a hundred times, but they will only cry with you once." It was his way of saying that when we are faced with adversity we have to go on, we have no choice in the matter. What he said gave me strength at a time that I really needed it. He was dearly loved. Liz McGlinchey King

From Julie Rossi

Brian and I were classmates in the Columbia MFA program in Theatre Management and Producing. Most students (myself included) spent much of our time there sucking up to our professors, making sure that we made a good impression so that we would be considered for potential job openings upon graduation. But not Brian - Brian always spoke his mind. He was so comfortable in his own skin that he would frequently challenge our professors, many of whom were and still are the titans of the theatre industry in NYC. He never shied away from engaging in a verbal volley with a classmate or professor with whom he disagreed. But he did so with intelligence, grace and wit and as such, frequently won us all over to his side. He contributed greatly to our class dynamic, and can't imagine what things would have been like had he not been our classmate.

From Jay Russel

So many lovely memories of Brian...where to begin?
His smile and his incredible, indefatigable humor even at adversities that would have wiped the humor out of many a man.
Seeing his company perform the Coarse Acting show, having you and he and your folks at Irish Rep last year at Around the World in 80 Days, him schlepping out to god knows where Williamsburg to see me in a ten minute play on a night that no one laughed at anything and he still was so gracious. The joy on his face on your wedding day. And his remarkable and infuriating online scrabble playing. I could never touch him but we kept playing. We were mid game when he passed.
He is missed so very much.
Much love
Jay Russell

From Diane

Thank you, all of you,

Who read this blog, who held Brian up with your words and wishes. I will be collecting stories and other words about Brian to post - I have a few in the box already. Many miss him, and none more than I. I can only hope to live into all that he taught me. And it is a great day.

From Elise Carper - Brian's primary nurse

I’ve been an oncology nurse since 1980. I’ve had the honor of working with many amazing people through the years, and as I think you know, I’ve loved my chance to work with them. Being a care-partner of Brian’s (and yours) was on another level in so many ways. He was the most heroic person I think I’ve ever known. His (and your) courage to face each trial, each recurrence, each treatment course, each side effect, etc., with such grace, was incredible, and rare. Even more special is how Brian never became “the cancer patient”. He remained Brian Nelson throughout our entire period of knowing each other. He never allowed anyone to reduce him to his disease, but instead, shared his open, full personality with us all. The birthday party last year spoke volumes on this point. When it threatened to become sad, Brian nipped the eulogies in the bud, and encouraged all to have fun, drink up!!!



When we first met at his original consultation, Brian told me that he was, unfortunately, an “expert” on hospitals, treatments, and medical personnel. He told me he was too experienced to put up with any “covering up”, or “downplaying” or “hiding information from me”. He said he expected to be treated as an equal at all times, and that if we (Dr. Harrison and I) slipped back into “typical medical crap” he would let us know. He told me, “I am a tough patient, Elise.” Diane, I found him to be anything but difficult….and it is one of my proudest memories as a nurse, that you and Brian called me that day you were deciding whether to get the trach or not. To have the 2 of you, want MY opinion on such an important decision?..... It was amazing, and an honor. It meant the world to me that Brian and you trusted me in that way.

From Chris Stack - about Brian's service

It is a great day.

Friday, Diane and the rest of Brian's family held a service here in New York at the Cathedral of St. John the Divine. It's claimed to be the largest Cathedral and Anglican church in the world, but the service, held in what is called the Great Choir, was warm and intimate, even with more than 200 (by my count) in attendance. Brian would have loved the music, aside from the lackluster performance of the congregation in singing Monty Python's "Bright Side of Life," ...but that was addressed later.

Then Sunday afternoon, which would have been his 51st birthday, his friends at the amateur theater club he's been a member of for 26 years held a reception in his honor. More than 150 friends showed up. We had the kayak there that he's been building for the past year with the help of friends. We had a great video montage created last year by his brother to celebrate Brian's50th birthday that showed bits of many of the mundane, embarassing, and exultant moments in the past 50 years. We had another video of Brian in all the plays he's acted in over those 26 years; it was amazing for many of his friends to see pictures of Brian at 26, 29, 31, and 43. We couldn't show the shows he's directed, designed, produced, or steered from behind the scenes because the 93 minute tape would have ballooned to 300 minutes.

We sang "Bright Side of Life" the way it should have been done.

It was a great day.

If you are so inclined, please write something about Brian A. Nelson. A remembrance, poem, rant, joke, anything at all - and send it to diane@dianereiners.com . She will post a collection on this blog. Much love to you all. Brian would want you to remember: it's a great day!

A Cancerous Man with a Plan

Quick blast of semi-good news! We finally had an MRI done on the shoulder, the hematologist oncologist Dr. Bruce Culliney - a grand guy and super smart and well respected chemo doctor - wanted to be sure it wasn't the disease affecting it. I've torn my rotator cuff and the only solution (apart from surgery, which I am definitely not a candidate for) is cortisone injections. So there's a plan to help the shoulder pain. Also the very same Culliney said that we should try Motrin, even though it's effect is very similar to the steroids I am on. Et Voila!! The pain reduces significantly! Yeah!
Diane and he both agreed that I should restart the Keflex antibiotic to stop the smell coming from the recent fistulas (ulcers) on my neck skin,"Et Voila!" the smell is gone the next day!

Now every time a Dr. looks at my fistulas he gives us the "Carotid Blowout" scenario, very seriously, we cut them off saying Dr. Harrison gave us this speech before even starting the neck skin radiation. It's an odd telling though, for the docs explain very somberly how the opening fistula could reveal the Carotid artery and then the Carotid could open - leading to the "blowout" (see it in the summer blockbuster "Carotid Blowout!!".) Then he goes on to the plusses, where how it is painless, happens in a couple of minutes and all I would notice is my getting tired, and going to sleep for a long long time. Its the up-beat moment - like a get out of jail free card! Actually, it sounds a lot easier that way than languishing in bed, besotted with opiates, half-dreaming of naked female pirates at battle with the neo-cons for clothes at JCPenney!
There is no treatment for these fistulas, just keep them dry and avoid hitting them with your golf club.
So we picked up plans and news today and we both felt is was a great day! How was yours?

Progress with a kink!

Ironically I re-injured my shoulder planing the kayak - which is finished and beautiful. And still in our parlor. My shoulder has been very painful, and to add injury to injury: a week and a half ago I was upstairs with Diane on the couch and I thought I'd quickly go to the loo - I forgot to rise slowly, given my blood pressure problem, and on my way started to pass out. Unfortunately, my brain went on the fritz and I fell down the spiral stair case wedging myself in the struts and the rails pretty well. Further injuring my shoulder. If you remember my earlier posts, I am accident prone!! So my shoulder has been keeping me in bed for almost a full week - I am now upstairs for my first real bit of "doing" and writing to confess my stupidity. More physical therapy tomorrow. The shoulder isn't broken, but may need an MRI - which I hate.

Otherwise, I've been keeping my food intake up. Chemo does its stuff. My neck skin is very thin from all the radiation and is now developing fistulas (open holes through the skin to whatever is below) that are luckily not anywhere near my carotid. These scare Diane a lot, but I can't see them so I remain blissfully ignorant.
The cats are not behaving well - Poe wants to go outside all the time since the weather is so nice, according to him even in the middle of the night, and Emily refuses to adjust to the time change - insisting instead on falling further back by an hour and asking for dinner at 4! Mere distractions!

But being upstairs, working finally on medical bills with Diane, and sending in the parking ticket excuses (medical of course), and sorting through the mail with Diane have been invigorating. And perhaps we will enjoy a night of sleeping through. So it has been a good day! Hope yours has too.

Oy and Oy and Oy!!

I have been absent (again) due to the various medical events that seem to roll into me like a strong wave. Recovering is harder each time. It was almost comedic.
Restarting Gemcitobin 3 weeks ago was accomplished by commitment, obviously(!), and was dependent on regaining the weight I had lost. Well, I got up to 157.5 lbs and restarted it along with a new drug (for me), Tarceva. I was sick a few times the first week and then after a short visit from my brother I went through 2 1/2 days of constant vomiting - not that I am accusing him of being so nauseating I couldn't help it - but his son had just gotten over a stomach bug several days before and we suspected it might have transferred to me in my weakened state. We stopped the Tarceva, too – in case that was cause, which we are now fairly certain of. Among other things, this is a public apology to my brother Rolf, and to Reece, too. Anyway, the very morning I recovered from that, I literally waterpicked my molar bridge out of my mouth! Bit of a panic. Went to see my great dentist, Dr. Verona (BI), and we decided to leave it out since my teeth have not met, even to say hello, in several months and I can not chew.
But as this was going on, my left shoulder sort of froze - intense pain ensued and still ensues each morning - luckily my mother bought a large moist heating pad, which has taken the edge off. Of course, it severely limits my movement.
Have I complained enough yet?! Through all this we finally got approved for Visiting Nurse Services and I have a home healthcare aid who is great! BUT, of course there is a 'but', the VNS administration is a bloody nightmare. They don't have enough nurses. They keep insisting that our insurance has to send approvals on everything, when we have a coordinator at the insurance company who keeps saying "no you don't" that our contract is different. So we tried for 3 weeks to get extra hours on Tuesday: the insurance said "yes" and VNS said "no we need insurance approval."
Next the VNS Social Worker shows up and says the insurer is cancelling our approval for home health care!!! Of course she is talking out of the wrong end of her body.
So it has been an eventful 3 weeks and I am still weak, underweight, frustrated, and starting to argue with everyone - now via Proloquo a software voice for me to type with because I can't speak clearly enough. So forgive me if I vent "F F F F F F F!!!!!!" That's better. At least the software has a good, RP British accent (mine is Public School British, but it is close enough that my friends find it comforting.
On a good note, I took a walk with a good friend yesterday - here in NYC it was 70 degrees - to the park's entrance 4 blocks away. Good company, lovely weather, a little walk. It was a great day!

Troubled Waters

Briefly, I am now on Ritalin to boost my energy and strength. It works, even though it makes me a bit shaky. I have been eating well - thank God! - and have gained a bit of weight. My big fight at the moment is that I am having panic attacks. I have never experienced them before and can't seem to control them. We go to visit my palliative care Dr, who is great, tomorrow to see if they might be caused in part, or solved in part by medication..
Today we saw my medical oncologist (chemo) and the plan is to start steroids tomorrow to see if they help the swelling and to also start one of the new bio-drugs, Tarceva, a kinease inhibitor, which is designed to block cell tumor cell growth by targeting the protein called the Human Epidermal Growth Factor Receptor. Along with that, we will restart the Gemzar that I was on before as it did have a slowing effect on the cancer. I like this plan of attack.
Even better though is the conversation we had with the Beth Israel social worker, Darren Arthur, who not only knows the ins and outs of the system to try to get home health care for me, but also helps me identify and understand the source of my anxiety. (3 major sources: abandonment - my birth mother abandoned me and my brother when I was 2 and Diane's return to school after a whole summer off has triggered that; second I am dealing with the first illness in my life that I can't manage a "work around" as I always have; third I am very social and the swelling has really put a damper on my old habits, especially of talking with people, and directing plays, and such) So I feel that I can start to deal with these issues now that I have an understanding of where they come from. Much better than just saying as I did in the first paragraph (that I wrote this morning) I am powerless to deal with them. Don't you think?
Oh! and I forgot to mention that I have gained 4 lbs in the past week. Still 3 pounds short of where I should be for a minimum but it is great that Diane's shakes and our determination to get back to a fighting weight is starting to work.
So while this has been a good day, or more accurately a definite swing in the right direction, I can't sign off with my usual "Yep, it's a great day!" just yet! Though as I write, both Poe (the ginger) and Whitman (the grey short hair feral-come-adopted us) cats are at the bottom of the bed! Good boys!
"Yep, it's a good day!"

Downs and Ups

Back again! We, Diane and I, have been through a very rough period both physically and psychologically. My weakness continued and early this week I developed bleeding in my nose and mouth. Luckily that went away - but at the same time I was so week I couldn't stand up. This lead me to become extremely depressed.
We went to see my surgeon to find out about the bleeding and the white fungal type stuff in my trachea's stoma (the hole in my throat.) The news was quite simple - the disease has progressed and the white area is disease with perhaps an superficial infection, and the bleeding was coming from more disease at the back of my mouth & nasal passages.
While this may sound terrible, it was good to know what was going on.
The surgeon suggested I have a "peg" (feeding tube) put in to avoid using my mouth for food. i decided that I didn't want another surgery now and would add the weight orally.
The remarkable thing is that once we'd made the decision and emailed my palliative care doctor about the weakness and depression, we felt we could make a plan with his help.
Add weight with a concerted diet of Carnation Instant Breakfast Very High Calorie cans (560 cal each) mixed with peanut butter, oil, and ice cream. Start taking a stimulant, Ritalin, to make me feel stronger, more energetic, and increase my appetite. And approach my chemo Dr to go back onto chemo to slow the disease again.
Remarkably the next day I was stronger, had a 2700 calorie day, and felt like the extreme depression (almost suicidal) was lifted! Perhaps it was just the little pill - or maybe it's my natural state and I needed help getting there - but my mental transformation is so remarkable that I can hardly believe the thoughts I was having before.
My palliative care doctor, Stewart Fleischman, pointed out that cancer can do that. It can both sap your strength and medicinally create depression.
But it feels great to be back fighting!
Oh! And here's a great little discovery from last night: I can use my wedding ring to open my left eye! i take it and put in right over where my pupil is, which holds the swollen eyelids back allowing me to see out of two eyes at once!! I'll try to find rings that work even better that I can put in both eyes. It may look odd but from inside it makes the world so much brighter!
Of course, I have to tell you that our ginger cat, Poe, was very attentive throughout this whole episode. If I was on the bed, he'd be there. If I was on the couch, he'd be above me on the pillow, and he silently followed me around for several days. Very sweet! So again I say to you " Yes, it's a great day!"

Absentitis

I've been off line for a while due to debilitating headaches, shortness of breath and weakness. Diane and I went to the ER earlier this week, only to find out nothing except one can never have enough patience in the ER!
So without any evidence that my lungs or heart are poor, we're working on the assumption that I've reached a saturation point in my chemo, the last two treatments made me feel like I'd played the hardest game of rugby ever and needed a full week to recover while feeling nauseated, and that coupled with a 2 week cold are why I'm off line. I think the cold would have gone away had I not had low white cells from the chemo.
Anyway, I've been resting. The headaches are sinus ones and are quite blinding. Tylenol does its job for a bit - amazing really since I never found Tylenol to do anything for me before. My theory for them is that it's that time of year when we have allergies, and I always used to get mild sinus headaches in the fall. Now they're just giant ones due to the increased swelling.
Enough analysis...it's how I deal with adversity. I try to think my way to a good solution - I feel safer that way! Anyway, Poe, our ginger cat and last adoptee is quite happy to follow me around and take his naps where I do - on the bed or couch. He always announces his arrival with a trilling, "tremph-ph-ph-ph" going up the scale. In case I didn't notice him! So all in all - it's a great day, even with the rain.

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.

Medical Miscreants

The half-witted Gastroenterologist I last wrote about just skims the ineptitude that lingers in the dark recesses of our brilliant, very costly, and extremely inept medical system.

Perhaps the most dangerous of these medical miscreants was an ICU resident, Dr. K., at UPMC (Univ. Pittsburgh Med Cntr,) whom I had the misfortune to come across in 2000, when I had my dual transplant (kidney-pancreas.)

I received the all-important call while on the loo; I didn’t know what to do first – pull up my trousers or leap for joy! Soody, my wife at the time, took control and got us to UPMC in quick order – with my emotions overwhelming me every time I had to talk to anyone. As soon as we crossed the Center’s threshold, I was thrown into a spare hospital room’s bathroom, had a tube up my bum, and before I could say, “I’m sorry but do you have the right person!?” I was double enema’ed, body shaved and chatting with various nurses, technicians, the surgeon, and the anesthesiologist in pre-op.

The surgery took 10 hours. They had to remove my original kidney transplant, insert the new cadaveric kidney, and then insert and attach the new cadaveric pancreas – the pancreas is a wobbly little thing with multiple attachments and takes a long time to go in.

I seemed OK at first in post op. Then my blood pressure was off and they moved me to ICU and gave blood – several times. This is where things started to go wrong. ICU, for those of you who’ve not been there is not a place you get better in; it’s a place that deprives you of sleep as you get poked, blood pressured, and attached to machines that beep constantly and are designed to keep you awake. It is a place you try to escape from so you can actually try to sleep and recover. Fortunately, my ICU nurse, Marjorie, was a joy. A kind, and attentive nurse, she worked at getting me some quality sleep and care.

Enter Dr. K., the resident “in control” of my case. After a couple of days, and several blood transfusions, I had started vomiting. K. insisted I had stomach problems and ordered an NG tube. If ever anyone suggests putting an NG tube into you – run for the nearest exit. You are awake while a doctor thrusts a too large tube up your nostril, past your (gagging) throat and finally down into your stomach. If only you were given a mallet to whack him on the head as he does it – that would even the score a bit. I could tell from K.’s forceful ineptitude that he had been one of those children who failed the round peg in the square hole test and broke the toy instead. After one attempt he had my right nostril bleeding, so he tried the left. Painful success finally ensued. Unbelievably, the next day he took it out as it wasn’t working. Then he proposed to do it again (and by this time I wasn’t able to breathe very well.) I said, “NO! Go away!” Luckily, he was shortly replaced by the chief surgeon, who’d returned from time off. He took one look at me and rushed me to the operating room, apologizing that he would have to split me, from stem to stern, up the middle. It seemed an odd time to be asking me for forgiveness as I was barely conscious but I took the mask off and said, “as long as it works.” Two hours later the leaking pancreas graft was repaired and my abdomen emptied of blood like a boat’s bilge.

I never found out whether K. made it into transplantation as a specialty, and I really dread to find out the answer.

The kidney transplant had a mind of its own, 3 months later I was back at UPMC fighting rejection again. But it wasn’t going to stay and after 3 years I was back on dialysis. I am extremely fortunate to have friends like John Schlesinger and Margaret Rowe, a married Brit/Irish couple who both tested to donate to me. It is hard to say how much that 2004 gift from John has meant to me, or how high it ranks in the heavenly scale of human altruism, but I am always aware that John’s gift has made my life longer and better. God bless him.

The 2000 pancreas cured my 27 years of type 1 diabetes and is still going strong after 9 years, a good record for pancreatic transplants which I’m told usually average 5 years.

Thanks to both the pancreas/kidney transplant and John’s donated kidney I’ve been able to volunteer at Ground Zero’s relief effort (St. Paul’s Chapel), volunteer coach Special Olympics, move to Brooklyn, get remarried to a lovely woman - Diane, plant a wedding fragrance garden, establish a valued friendship with Soody, direct several plays, fight cancer, and with the help of friends, Steve and Chris, build a kayak. I am so very lucky and yes – it’s a great day!

Bowel Me Over

Pain medication can bring blessed peace. Like the calming sensation of a warm bath stroking your neurons, soothing your synapses, cooling your brain. It’s a cancer patient’s indispensable sidekick. But it also has another less desirable effect, the cure for which Jamie Lee Curtis chirps about with irritating “regularity” – constipation!

There is unsettling about the oncology nurse’s inquisition when it goes from “are you in pain?”, (of course, and it’s either from the cancer or the treatment!) to “when did you last go to the bathroom?” The question seems out of place, a brain fart almost. But, without batting an eye, you answer “yesterday,” or “three weeks, two days and five hours ago,” and groan.

Suppositories, enemas both water and mineral oil, Senna tablets, Docusil, Milk-of-Magnesia (where is ‘Magnesia’?), magnesium citrate are the OTC (over the counter) remedies and it’s up to you to find the right balance. But sometimes another drug or treatment conspires with the pain meds to ambush your best defenses, and then you get an impacted bowel, as I did a few weeks ago. I’d rather call it a painfully immovable, over-stuffed sausage angrily meditating above your groin.

Admittedly, we were slow to ask the right person for the OTC cure so we threw suppositories and water enemas up there like shoppers at a Prada sale. I consumed the oral options too but the angry Buddha had shut down my entire gastric system, so they came back rather quickly. The answer turned out to be mineral oil enemas. Days later I was back chirping with Jamie Lee.

Of course anyone with half a brain is asking themselves, “why didn’t he speak to a gastroenterologist?” Well I tried. First my old GI didn’t take my insurance anymore and I hadn’t developed the sort of doctor – patient relationship with him that enabled a quick email or call (more on the vital importance of this in another post.) So then I asked both my primary doctor and my Chemo doctor, both of whom recommended a visit to the emergency room if it continued – a very expensive option that vacuums time like nothing else in the world. So I set about getting an appointment with a new GI.

Visiting a new specialist doctor, in New York City at least, is like landing on an orbiting planet – you have to wait for months for an opening. Call after call resulted in, “are you a current patient? No? He can see you just before hell freezes” or words to that effect. Frustrated, I emailed my oncologist for help. A week later I was sitting in the GI’s waiting room and since my crisis had ‘passed’, I was there for a general plumbing check.

In walked nattily dressed Doctor X carrying my freshly minted chart. He asked for my problem. I put my speaking valve on my tracheotomy and explained, in my difficult to understand voice, what had happened. As I was talking, he was reading my chart - this unnerves me because it’s like driving and talking on the cell phone, you don’t have undivided attention. He read my Medical History (written and printed at home, it’s an invaluable one page, medical summary that includes a medication list - saving a great deal of time with doctors’ and hospitals’ forms.) He expertly prodded my belly, announced I no longer had the impaction, and prescribed a drug and a colonoscopy, saying, “my assistant will arrange that with you for next week.” I didn’t bother with a peevish “I told you already it was gone,” but did reminded him that I get nausea for a week after each chemo dose, so it might be better for me to try to chug the reservoir of liquid required during my week off. Then he was out the door.

This all sounds proper. BUT, and this is my biggest concern with doctors today, I never really had his attention. He said all the right things but didn’t respond to the individual variations of my case. Later I found the medication doubled my chemo’s nausea and it wasn’t necessary since I was no longer impacted by the impaction. This sort of half-wittedness may just be the result of insurance income pressure. Many doctors today leave 15 minutes per patient or less, to keep up the frequency of reimbursements or just because they want to serve as many as possible. But that is not the doctor for my colonoscopy.

Here ends the blog on bowels and consternation. Thanks for reading and have a great day…after all the cats are happy with this great weather!

“I am Sir Brian, as bold as a lion!
Take that! – and that! – and that!”

Introduction to My Health

All mine: 3 kidney transplants, a pancreas transplant, 27 years of type 1 diabetes, 4 plus years of metastasizing cancer, a broken leg, elbow, wrist, both feet, hands, skull and ribs (yes I might be accident prone from time to time,) plus all the secondary illnesses that waltz along with these problems (osteoporosis, Gastroparesis, cataracts, chronic facial swelling (also known as moon face - see photo,) gall bladder failure, impacted bowel, chronic bleeding, etc...)

I have survived over 40 years of ill health. Sickness does not dominate my life. And okay, this is about my health, but it is also about yours. I have learned to live a life of chronic patienthood where I am not dominated by illness. I have managed to focus on goals that have nothing to do with illness. Living life for me is learning to surf above the uneven terrain of my health.

I had chemo Tuesday. Again. I’ve lost track of the months I’ve been on, but I started 7 drugs and two years ago after two years of surgery and radiation. And it IS a drag! So, to divert myself from the on-coming nausea and tiredness, I started this blog today.

I hope this blog will help others who are living with chronic illness, to laugh. Also, if you are already a friend, this will keep you updated on my health. Most, my wish is to help other patients realize hope and gain knowledge through shared experiences. (No one wants to, or should have to, deal with chronic illness on their own.)

Today’s word: GEMCITABINE, my current chemo drug. Don't ask me to say it, please. Pronouncing it would be difficult for an intact person and, as it is, I have only half a functioning tongue. 2 weeks on and one week off. Side effects: nausea, puffy skin, and fatigue. And fatigue. It seems to slow down the cancer, (metastasized squamous cell carcinoma that started in my rear tongue and spread to my lymph nodes and then (now) to the sub layers of my skin on my neck and chest. It hasn't stopped me.

I get up each morning and remind myself that I’m going to be swollen, tired and nauseous. So if I get something done, like epoxy the hatches of the kayak I’m building, it’s a great day!! Or if I get through all my (liquid) food, it’s a great day! Or if one of our cats comes up to say hello, rub itself on my leg and settle down for a nap near me…yep: great day!

Today is a great day! Thanks for reading.