If. (A love note.)

I heard this song on the car radio today, right after I’d driven Paul from his first radiation treatment at UWMC to his second infusion at SCCA. Its sweetness made me ache (in a good way), and put me in touch with how I wish I could change what’s happening in our lives – particularly in Paul’s life – right now. If the world was mine, I’d take care of a few other things (such as Paul’s cancer) before playing around with the stars and the birds and the color scheme. Still, the sentiment, the lyrics and the song are lovely. So here’s a little love note for my sweetheart. (Love, also, to all of you reading.)

If the stars were mine I’d give them all to you
I’d pluck them down right from the sky and leave it only blue
I would never let the sun forget to shine upon your face
So when others would have rain clouds you’d have only sunny days
If the stars were mine I tell you what I’d do
I’d put those stars right in a jar and give them all to you

If the birds were mine I’d tell them when to sing
I’d make them sing a sonnet when your telephone would ring
I would put them there inside the square whenever you went out
So there’d always be sweet music whenever you’d walk about
If the birds were mine I tell you what I’d do
I’d teach the birds such lovely words and make them sing for you

If the world was mine I’d paint it gold and green
I’d make the oceans orange for a brilliant color scheme
I would color all the mountains make the sky forever blue
So the world would be a painting and I’d live inside with you
If the world was mine I tell you what I’d do
I’d wrap the world in ribbons and give it all to you
I’d teach the birds such lovely words and make them sing for you
I’d put those stars right in a jar and give them all to you

–Melody Gardot

PEG. (It will come back to you.)

One of the enduring peculiarities of cancer treatment is the way it combines the most advanced modern science and great intellectual achievement with pre-human barbarity and heartless practical measures. One of the first times I encountered that was back in the 80s, when one of the chemo treatment regimes I had was called “leucovorin rescue.” In that technique, the patient is administered a lethal dose of a drug that chemically masquerades as a vital cell nutrient. Cancer cells, with their higher metabolism, greedily drink in the bogus chemical, and fall over dead when they try to use it, and then, to keep the rest of the patient from falling over dead, they flood the body with another drug which CAN be used as the expected nutrient, literally the antidote, and the good cells go on to live.

Another one of these high-tech barbarisms explains why I spent last night in the hospital.

Tomorrow I begin radiation treatments. Highly educated people have spent the last two weeks designing complex computerized targeting routines to drive an incredibly complex machine and align multiple beams of radiation with millimeter precision to destroy the cancerous cells in my mouth. That said, it is completely expected that this treatment will so trash the mucous membranes of my mouth that I will be unable to eat and perhaps not even drink, and I will have to continue in that state for weeks and weeks as I undergo daily doses of radiation.

But there is a well-established way to keep someone who can’t use their mouth fed and nourished for long periods of time. And, as readers of our previous cancer blog and those who knew us in 2004 know, we have a lot of experience with it. Following my 2004 surgery, it was months before I had learned how to swallow again. I spent most of that year getting my nourishment from a feeding tube placed into my stomach using percutaneous endoscopic gastrostomy, or PEG.

(Yes, Facebook fans, there was a reason I posted a link to a Steely Dan song that was going through my head yesterday. I was in the waiting room of the UWMC Digestive Diseases department trying to prepare emotionally for the process. That was no trivial undertaking.)

My memories of the 2004 procedure to place the PEG, and the adjustment to using it, rank among the most traumatic memories of my life. (Yes, that is saying quite a lot.) It was placed in the days shortly after my major head and neck surgery, when I was barely able to communicate, and I was on a variety of powerful drugs. The team in the Interventional Radiology department misjudged the interaction of the opiate painkillers I was on and the sedatives and anesthetic they were using to place the PEG. I was far, far too conscious, and in too much pain, but not able to effectively communicate that. I was also not thinking clearly enough to do much more than hurt, struggle and fail to be understood, and be afraid, imprinting a horrible memory for a lifetime.

Other bad PEG memories got logged later, when I was back in my hospital room. The summary of that experience is in the old blog. As we would later learn, my body, trained by years of healthy eating and whole foods, reacted badly to having highly synthetic feeding tube formula pumped into my stomach. That pain, combined with my tangled, drugged but painful memories of the placement procedure, and my memory that the death of one of my elderly grandmothers had been hastened by a misplaced feeding tube, started me panicking in the middle of the night. An awful, awful night, that was.

So, despite all my powers of positive thinking, and ability to self-coach and think of all that was different, I was having trouble staying calm while waiting to be called back for my procedure.

The good news is that this time around, the entire process went better, and went according to the plan. I got the tube placed late in the afternoon, then spent the night in a room at the hospital so I could be monitored, and they could check the tube in the morning before releasing me.

Of course it helped that I went into it fit and functioning, not recovering from major surgery. We were able to have a preliminary meeting with the doctors, resident Jarrad Scarlett, MD, PhD (!) and Dr. Kuver, from the Digestive Diseases team — the other team in the hospital that does PEGs. They listened calmly to my story, and showed great care in making sure that I’d have a better experience this time. They asked careful questions about how much pain medication I’d taken, and when, and even suggested that they could reschedule the procedure to have a full anesthesiologist available, if I wanted. I felt like I was in good careful hands. (And, though he appeared to be no relation to the Captain, I did feel that I could count on Dr. Scarlett to protect me from Mysterons.)

In the event, I remember being wheeled into the procedure room, and getting all the monitors hooked up, and not really anything after the nurse said she was starting the drugs. Nice. The other good thing about this time around is that we don’t actually have to start using the PEG tube yet. I’m still able to eat and drink by mouth.

The night in the hospital was also nicely routine. Kimberly left after accompanying me to the room and staying through the “clear liquid” diet I was allowed for dinner. After that I took a nap, and then awoke with a great idea. Normally when we are apart we call each other to say good night. But I had brought my iPad with me, and my great idea was that I could use FaceTime to talk to and SEE Kimberly. (Yeah, this idea would have occurred to my teenage niece in a split-second – I’m old. Sue me.)

Following a nice FaceTime chat, I went back to sleep, lulled to sleep as usual by the sound of the podcast of As It Happens from the CBC radio. I had a quiet night, and in the morning my PEG checked out OK. Dr. Scarlett came by and did some minor adjustments, pronounced it good, and I was able to go home. There is some lingering pain at the entry site, which will fade as it heals up and is no worse than the other parts of me that are hurting in my mouth.

Before we left, we met with the young woman who is the dietician representing the formula supply service, but I’ll skip those details until we start actually using the new tube.

So, the morning went great, and we had enough time to get home and recharge before returning to UWMC in the late afternoon for the “dress rehearsal” of my radiation treatments. Which will be covered in a later post, not tonight.

At the SCCA.

Last Thursday, Paul and I spent most of our 15th wedding anniversary at the Seattle Cancer Care Alliance (SCCA). The plan was for Paul’s treatment to take place at the UW Medical Center (UWMC), so what were we doing at SCCA?

Before I answer that question, let’s take the way-back machine about a month into the past for a little catch-up…

The Monday after we got back from Houston (April 29), we met with a medical (chemo) oncologist, Dr. Christina Baik, at UWMC. She confirmed what Paul had learned through some web searches, that the two drugs used to treat oral squamous cell carcinoma are cisplatin and cetuximab.

Cisplatin is a long-time stalwart of the chemotherapeutic armamentarium. Paul’s uncle was treated with it in the 80s for a brain tumor, so Paul knows that it’s, as he puts it, one of the most “puke-tastic” drugs ever developed. It has a variety of debilitating – and sometimes permanent – side effects, including neuropathy, kidney damage, hearing loss, and bone marrow suppression. Paul already has some peripheral neuropathy from the CHOP chemo cocktail he got in the 80s, and losing any more finger sensitivity and dexterity would not be good.

The other option, Cetuximab, was just a dream back when Paul was getting chemo in the 80s. He remembers reading about the marvelous research starting into what were called ‘monoclonal antibodies’, and thinking how cool it would be to get one of those. Now here we are, living in the future: cetuximab is a monoclonal antibody drug, approved for treating Paul’s type of cancer in 2006.

Cetuximab (the ‘-mab’ ending indicating that it’s a monoclonal antibody) is not really chemotherapy, in that it’s not a poison. However, it does have side effects, the most common of which are an acne-like rash, and flu-like and lower GI symptoms that suggest you wouldn’t want to use it for fun. However, a small percentage of people have severe allergic reactions, especially to the first dose, so benadryl is typically administered before the drug.

But, we learned from Dr. Baik, the role of chemo for treating Paul’s cancer is secondary. The drugs are used to “soften up” the tumor, improving the effectiveness of the radiation treatment, but are not curative on their own. So the real question was whether Paul could be given enough radiation to zap the tumor without damaging all the important stuff around it too badly. The radiation oncologist decided that he could (more about that later), and the tumor board decided radiation with cetuximab was the best treatment option for Paul.

Now let’s skip forward two weeks, as preparations for Paul’s treatment were beginning…

On Wednesday, May 15, Paul had his radiation mask fitting at UW. After the fitting, it takes about two weeks for the radiation folks to get everything ready for the first treatment. And, since the protocol is to give the first dose of cetuximab one week prior to starting radiation, the rad-onc folks coordinate with the med-onc folks, and med-onc sets up the appointments for the drugs, and in Paul’s case, for the insertion of the PICC line that will be used to administer the drugs. So when Paul and I flew east to New York City on Thursday, we were expecting a phone call to confirm scheduling for the PICC and the first dose of drugs. The call didn’t come while we were in NYC. There was no voice mail when we returned home. Monday passed with no call.

So Monday evening, I searched the internets until I found a phone number on the UW website for Dr. Baik’s assistant, whose voice mail message revealed him to be an academic department assistant, not a medical assistant. But on his message, he reeled off the names and numbers of nurses to call if one was, in fact, the patient of one of physicians for whom he works. I called and left a long, tense voice message for Karen, Dr. Baik’s nurse, detailing Paul’s name and his patient number and the start date for his radiation treatments and what we needed from medical oncology this week in order not to delay his first radiation treatment next week and all of our phone numbers and please to call first thing tomorrow morning. (And I got through it without crying, which is what I tend to do when I’m angry that people are not taking care of Paul the way that they should.)

Karen called back the next morning, and told Paul that my message was the first she’d heard about this, but that they could schedule him to get his drugs at UWMC on Wednesday. He reminded her that he needed a PICC inserted before he could get his first infusion, and that he’d been waiting for almost a week to hear from them about scheduling it. She apologized, saying that someone had obviously dropped the ball. And she got to work, and called back shortly with a PICC appointment for Wednesday, and a whole slew of appointments for Thursday, but scheduled at SCCA, because they only do cetuximab infusions at UWMC on Mondays and Wednesdays.

Paul’s six (!) appointments at SCCA – patient registration (because he has never been to SCCA), blood draw, doctor visit, pharmacy tech, PICC dressing change, and infusion – were scheduled with plenty of time in between, apparently to allow for each one to run late without affecting his ability to show up for the next one on time.

After the blood draw, made easy by the new PICC, we headed upstairs for Paul’s noon doctor appointment. First in was Nurse Karen, who apologized again for the ball-dropping, and gave Paul his 3/4-inch-thick SCCA Patient Care Manual. Directly below the title are the words Knowledge is Power. Indeed. On the first page of the manual are the phone numbers and email addresses of important med-onc people. The rest of the manual appears to be undergraduate level reading, less useful for us than for newcomers either to Seattle or to cancerland.

Next Dr. Baik came in, and let Paul know that his bloodwork looked fine for the infusion. She told him that his first infusion would be a loading dose, double the usual dosage, and that future infusions would be half as much. As Dr. Baik left, she told us that the pharmacy tech would be in shortly for the “patient education” session on side effects and their management.

When pharmacy tech Kathy showed up, her first question was, “What do you know about the drug you’re getting?” Really? What kind of question is that? Paul responded, “A lot.” And things got worse from there. We already knew most of what she told us, but she presented the information in a way that didn’t allow her to gauge that. Also, she downplayed the rare cardiac side-effects in a way that led Paul to comment that those 1% are real people, not just numbers. The kicker was when she pulled out a prescription for meds to combat possible side effects: Zofran, in case of nausea; minocycline, an oral antibiotic to treat the rash; and Cleogel, a topical treatment for the rash. She explained that Cleogel is clindamycin… and Paul snapped, “I’m allergic to clindamycin.” Ironically, it gives him a rash. And, yes, the allergy was in his chart. She left the exam room to verify that Cleogel really is clindamycin; when she returned, she apologized, and handed me the scrip form with the Cleogel scratched out. (Dr. Baik also apologized via email the next day.)

Next, we stopped to visit with the scheduler, Keegan, who was trying valiantly to arrange Paul’s future infusions and associated appointments so that they played nicely with his radiation appointments at UWMC. This was more difficult than one might imagine; in the end, no two infusion days are scheduled the same. Might the scheduling have been simpler had it been done a week earlier? We’ll never know.

After getting his PICC dressing changed, Paul checked in for his cetuximab infusion. The receptionist gave him a pager, which buzzed a few minutes later. A nurse took us to one of the infusion “suites”, a small room with a hospital bed and recliner. Paul chose the recliner. I took the rolling doctor’s stool and table. The nurse hooked up the infusion pump to Paul’s PICC, dosed him with benadryl and steriods, and then started the cetuximab. Paul watched a movie on his laptop and dozed a bit. (The benadryl made him sleepy.) I did some work, wrote a bit, read a little. And two hours later, he was done.

paul infusion 1a

And he felt fine. No nausea, no difficulty breathing, no heart attack. Whew. It was, as we’d hoped, a non-event.

By the time Paul was unhooked and released, it was almost 7:00 pm, too late to catch the movie that we’d planned to see. So we went home, snuggled with each other and the cats, and had a quiet, uneventful evening.

We’ve had happier anniversaries, but we’ve had much worse days in cancerland. The day could have been worse, and we’re thankful it wasn’t.

Gettin’ PICC-y wit it.

During what I now think of as my undergraduate thesis work in the Hero’s Journey, I had a lot of toxic stuff injected into my arms. The chemo regime that we used against my lymphoma in the 80s involved regular injections of chemicals that actually came in bags bearing big ‘BIOHAZARD’ stickers. And I had round after round of such injections. As a result, my veins are a mess, a network of vessels that are scarred, or shrunken or blocked, or otherwise hard to deal with. Nowadays, I count myself lucky if I can get even the most routine blood draw with only one or two needle sticks, and lab techs sometimes spend 15-20 minutes prowling my arms, using warming cloths and other tricks to find a usable vein.

Which is why I had an appointment on Wednesday for the insertion of a PICC line. A PICC is basically a long, flexible tube that gets inserted into a big blood vessel in an upper arm, and threaded up until it empties in the chest near the heart. It can be fastened in place for an extended period of time, and the external end has a plastic fitting designed to mate with syringes. It can be used both to inject drugs and to take blood samples. Which means no needle sticks required until the PICC gets removed weeks from now. YAY!!!

Back in the 80s, I had an ancestor of the PICC inserted when my veins ran out before my need for chemotherapy. At that time I had a ‘Hickman catheter’, which served a similar function, but was much more problematic. For one thing, it required a surgical procedure  to place, and for another, it required daily maintenance injections of the anti-clotting agent heparin, which I had to do myself in sterile conditions.

Insertion of the PICC was much simpler. It happened in a regular hospital room on the “Special Procedures” floor. The process was handled by one quiet and competent RN, Claudette. There was much draping of areas, and unfolding/upackaging of sterilized kits, and masking of everyone in the room, and slowly, in calm workmanlike fashion, it was done. No pain, nice and quiet, routine. The way you like to have procedures go.

A short trip to the radiology department for a chest X-ray showed that the end of the tube had taken a short detour the wrong way, so the PICC nurse came down and applied an easy fix, which was confirmed on another x-ray. I was good to go.

I now have a bit of plastic stuck by adhesive to the skin of my upper arm that holds the tube in place, and the outer end protrudes a few inches with a fitting on the end for syringes or IV tubes to screw into. There is a clear plastic bandage like sticky Saran Wrap that covers the plastic bit and the end with the fitting sticks out from that. I get a niffy elasticized cloth sleeve that slides over my arm to cover and also keep the dangly bit from getting in the way or caught on anything.

The best part is that the bandage only needs to be changed once a week, and the tube only flushed once a week. I have infusions once a week. Voila! It all gets taken care of at the same time, by professionals, and all I have to do in between is keep it dry and undamaged. Yippee!

(I have a couple of iPhone photos I took to show you how it looks, but they seem to be lost in some void between mail servers at the moment, and I’m too lazy to chase down the cable to get them off my phone in the ‘old-school’ way right now. They’ll show up eventually.)

Three Tooth Tuesday.

My New England forebears had the good sense to be farmers and not whalers, but I have heard the term “Nantucket Sleighride”. The metaphor of being in a small boat being dragged at overwhelming speed across the open ocean by a powerful force, doing everything in one’s power to hold on until such time as you can prevail, came to mind this morning. The harpoon has been sunk, and we are off!

Yesterday afternoon I had a session at Seattle Special Care Dentistry, the local hot-spot for hip head-and-neck cancer patients about to get radiation. As we learned years ago when we visited MD Anderson for a consultation on my 2004 cancer, radiation to the jaw raises a host of issues.

Most of us don’t quite get how the jaw and the teeth are living tissues, with blood flowing through them, and growing cells and everything. There is an elaborate system of micro-vessels and cellular interaction going on all the time that keeps things healthy. Radiation does very, very bad things to that.

Radiation will damage the blood flow through the bone, so that any future wounds, like if you needed to extract a tooth, may not heal. Also, while I am proud of my big vocabulary, I really would prefer to not have encountered the word “osteoradionecrosis”, basically the bone dying as a result of the radiation. Ick. To make a long story short, before they zap you, they need to look skeptically at any of your teeth that may need treatment for decay in the future, and if any look too bad, they need to come out while your body still has time and ability to heal from the wound.

For me, there were three. One on the lower left, where a previous crown had broken off and given me the excuse to have a dentist take a look at the sore spot in the back of my mouth (which is when we officially discovered the cancer.) The other two are the rear molars on the right side top and bottom, which will be directly in the beam. (As it turns out, I don’t use those teeth much anyway, since the 2004 surgery left that part of my mouth numb, and I don’t chew much on that side.)

I have never liked going to the dentist. My early dental experiences were as a child in the 60s, when my dentist, Dr. Milton, was an old man who had been and was still my father’s dentist. God knows when his training had been, but let’s just say it’s a good thing dentistry has evolved rapidly since Dr. Milton’s day. By the time I was an adult in Seattle, I was able to find an office with a staff and dentist I really like, who use state-of-the-art equipment and techniques.

Still, I don’t like having people working inside my mouth. And consciously knowing that the Special Care Dentistry people are Seattle’s top choice for this kind of work was only a small consolation. I was really afraid of yesterday’s procedure. I knew I was going to be sedated, but not completely out, and it was unclear to me how awake I was going to be, and how much pain or conscious participation was going to be called for.

In the end, all went well. In the waiting room, after being of sound mind to sign the consent form, I dissolved two pills under my tongue. 20 minutes later they were kicking in, and I was able to walk to the chair and get settled, and they gave me a nasal cannula with nitrous oxide. I remember them injecting anesthetic into my gums, and a few parts of the process later on, mostly them telling me to take more deep breaths of the nitrous, and it was done. I’m happy to say it was far less traumatic than I had feared.

Still, I did just have three teeth pulled. There was a fair amount of bloody gauze involved and I have an ice pack on my cheek as I type this. I’ve dialed up the pain meds. And, I do remember all the instructions about monitoring for infection or other post-surgical complications, which they carefully gave me before I was allowed to take my pills in the waiting room. So far, though, so good.

Which means I should be in good shape for this afternoon’s adventure, the PICC line insertion!

 

Full to Bursting.

Is it possible to wake up hungover after a day when you drank no alcohol?

What a day I had Friday! Waking up overlooking the September 11 Memorial, a sight (and a site) that holds such complex emotions, in what Kimberly and I are calling the ‘architect’s dream room’ because we have a bird’s eye view of all the construction crews working busily every day.

Then, properly kitted out in jacket and tie, a short walk past historical Trinity Church over to the New York Stock Exchange. Wall Street is different than the last time I visited, when there weren’t so many fences, or giant obstructions in the road to prevent vehicles from getting too close. Rounding the corner to see a huge banner with my company’s name and logo on the front of the building for Tableau’s IPO. Then getting to go inside for breakfast and to see our young CEO ring the opening bell, and waiting on the floor for the first public trade of our stock. Even the normally jaded among our small crew found themselves thrilled.

paul at nyse tableau nyse

Back out onto the street by 11am, I would have already counted it a once-in-a-lifetime day. I took a short walk up Broadway, to connect with Kimberly, who’d been visiting a market of her own, GrowNYC’s City Hall Park Greenmarket. After we went back to the hotel to change and for me to come back to Earth a little more, we set out for our afternoon.

A short ride on the subway, which is both better and much the same since the last time I rode it, I think in the pre-MetroCard days. (No, I don’t get to New York much these days) up to 14th Street, so we could have lunch in Chelsea Market at The Green Table. That was just what I needed: wholesome, tasty food eaten slowly in a quiet space at a real sit-down table, away from the crowded, hustle-and-bustle, perch-on-a-stool wolf-it-down-while-elbowing-a-stranger that is so easy to find in Manhattan.

Because, and this is where the music cue shifts to ominous strings, wolfing it down isn’t so easy when your mouth hurts and the cancerous sores make it sharply painful to open your mouth very far. Because in my pocket pill case is an assortment of OTC analgesics and some prescription narcotics from which I have been carefully dosing myself all morning but even so I can’t escape the frequent awareness that It is There, especially when I’m eating. Pain management is an inexact science. (Though, in hindsight, I can acknowledge and salute my superior skills at compartmentalization, since at no point during the afternoon did I dwell on the blue targeting mark on my chest or any other aspect of my radiation simulation two days earlier, but I digress.) However, over the course of a restorative lunch, the ominous strings faded to a low murmur, and on we went for our adventure.

Chelsea Market had been picked strategically, because we were on our way to walk the High Line, the beautiful public park transformed out of a historic freight rail line elevated above the streets on the west side of Manhattan. While we were clearly not the only design, urban planning and civic amenity fans strolling along, it was great to see that this new park is really becoming part of the urban life of its neighborhood and there were plenty of locals.

I loved it. It was a perfect day for a walk in a park, sunny and just the right temperature. And it is a beautiful park, up in the air where you can catch a breeze, and lined with lovely plantings, and full of fascinating design choices and ways in which they transformed this old, ugly, industrial relic into a wonderful civic space. We walked all the way to its current end at 30th Street, enjoying each of its changing zones. There was plenty to look at, ranging from the close detail of how they textured the concrete, to views of the  surrounding buildings, the long street-scape canyons and even, at one point, a view down to the Statue of Liberty. It was great. I really enjoyed it. (Even if, for part of the walk, my cheek was burning with a feeling like the mother of all canker sores.)

Our intended destination was the big B&H Camera superstore at 34th Street. Kimberly, who has developed into a great photographer, has been dreaming of a new camera to replace and upgrade the aging and somewhat damaged one she has, and our anniversary is coming up, and well, a camera lens has glass, and crystal is the traditional gift for this anniversary and…..well, we were on our way to B&H. So we descended from the High Line at 30th Street and started walking along the city streets.

And there I was. The temperature was perfect for walking, and I thought about just how glorious a day it was, and how happy I was, and I opened my heart just a little bit wider to drink it all in, and I was crying. Walking along 30th Street in a construction zone with tears running down my face.

Kimberly sweetly steered me off the sidewalk into a little-used covered walkway where I could try and compose myself. But it was hard.

In fact, I’m crying again just writing about the experience. Because there is just too much. So much good. So much bad. All of it. All together. And it’s awesome, and it’s awful. And right now it is so packed with new and wonderful and once-in-a-lifetime moments and some of them are ones that are enviable and others are ones that are dreadful and they are all here and I am living them all and it’s life and it’s the warm sunshine and it’s lying in the radiation machine and it’s the thrill of being on the trading floor and it’s the pain and the fear when I eat, and it’s life and it’s full and I’m full and when I feel too much of it at once it leaks out and tears come streaming down my face.

And it’s not that I’m sad. I’m not crying because I’m sad, really, and they aren’t properly called tears of joy, either, because I’m in some further emotional space, where they are really just tears of life, of experience, of letting in all there is, both ‘happy’ and ‘sad’ and all the other shades of feeling.

In a minute or two of trying, I was able to turn off the water, not feel too much too deeply too quickly, and get ‘back to business’, so that we could continue on our way and I didn’t have to pass the construction workers on the street crying like a little girl. Which was good. After a block or so, we stopped at a little corner store and got ourselves something to drink, which eased the burning in my mouth. We got back to being on a normal tourist afternoon, and it was nice.

When we finally got to B&H, we were disappointed. It was Friday afternoon, you see. B&H is run by observant Hasidim, who make sure their employees can be home for Shabbat. Kimberly’s new camera would have to wait.

We took a different route back to the High Line, then walked all the way to the other end. A subway ride back to our hotel gave us a short time to regroup and dress for the company party that night, a loud event in a dim club. (I’m not a big fan of trying to socialize with people while shouting to be heard and squinting. Perhaps it’s just that I’m old enough to be able to distinguish between sensory assault and pleasure. Maybe it would have been better if the opiates on-board didn’t preclude me from drinking on the company’s tab. Whatever. We didn’t stay too long. I made a mental note to suggest to the company party planners that we make sure to have a ‘quiet room’ at our next event.)

Note: most of this post was written Saturday morning. But it wasn’t completed and posted until today, Tuesday. We crammed a bunch more NYC experience into Saturday, then flew back early Sunday, so sleep deprived, time-zone-disoriented and medicated that Sunday mostly evaporated. Monday involved showing up back at work, and for me, tidying up some loose ends before going on leave. All of which could be several blog posts, but will probably end up being this paragraph, because we have more to cover, starting today.

 

Meeting the Nutritionist.

Thursday we had an appointment with a nutritionist at the hospital. While it was not bad, and actually, it was kind of good, it still left me feeling grumpy and frustrated.

Part of that was the way it started. We had an example of the downside of getting treated in a big medical center with multiple specialties. The nutritionist I was supposed to see spends some time in the Cancer Center, which is where the radiation treatments happen, in the basement at one end of the hospital. That was where my appointment was supposed to happen. But, when I called the other day to ask where the appointment was supposed to be, they told me I should check in at the Surgical Specialties department, on the 3rd floor of the Surgical Pavilion, an addition at the opposite end of the hospital across a skybridge. After checking in and waiting 20 minutes in the admittedly lovely waiting room there, someone figured out the mistake and came to tell us we needed to go to radiation oncology. Grr.

When we got there and met her, we found the nutritionist herself was a nice young woman, and she escorted us back to a room for our interview. There we quickly learned that she was not, as we had been led to believe, the person who was going to be talking to us about the details of getting my feeding tube and what formulas we were going to be using. That will be someone else, who we’ll meet when I have the tube implanted. (So much for Kimberly’s having prepped and re-read all the posts from the last blog about the myriad problems we had with the feeding tube.)

No, this was the person who has the job of assessing my diet and nutrition skills, and will be monitoring my weight and food intake to make sure I get everything I need during the course of treatment. She was very pleased to hear that it sounds like I have a healthy diet, and pay attention to food and nutrition already, and also that I had experience with the feeding tube years ago.

Of course, it also meant that there wasn’t really anything she could tell us that we didn’t already know. So it seemed kind of pointless for us. I guess it’s probably good that they have a meeting with someone like her built in to the process, for people who aren’t well-to-do organic locavores who make their own bread and cook because they are used to a low-sodium whole food diet. Intellectually, I also understand that it’s good she got to meet the healthy, pre-treatment me, so she’ll have something to measure against in our upcoming weekly appointments, but … eh.

And, as I thought about it, I realized that it’s good they have someone on the treatment team whose job is to monitor me and be responsible for me getting enough nutrition to stay as healthy as possible through the treatment and recovery. That’s great and means I am well supported. On the other hand, that implies that I will need someone to monitor me and be responsible for making sure I get enough nutrition during treatment and recovery. That is scary and ominous.

So, I ended the appointment thinking about how it’s very likely that in a few weeks my mouth will hurt enough that I’ll be happy to be able to barely swallow liquids, and just getting enough calories on-board will be a chore. And, as we learned, it will be an important one, because if I lose weight in my face, the targeting mask for the radiation might not fit quite right anymore. (Gee. Great. Are you kidding me? How much more ridiculous crap do I need to worry about?)

Finally, instead of dwelling on that, I decided I’d just put all that on hold, and delegate the worrying about it to our new nutritionist, and move on to the next thing on the list.

Which was Friday morning. My initial exam at the specialist dentist, who evaluated my teeth and jaws for their ability to cope with the treatment and after-effects. That was … something. More on that later.