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.