Visitors!

We've had several visitors since last Wednesday. My brother Jonathan visited the second half of last week and then Robin's family visited over the weekend. Saturday we played cards for a couple of hours with Sharon and Ed, plus Robin got out for a walk to Times Square (just a few blocks away). Sunday she went out to a restaurant with the entire clan to celebrate some birthdays - Billy's & Peter's! Robin brought along a pad of paper for when she had something to "say". It was great to get out of the apartment and to see everyone for a while!

Robin's graduated to using her PEG feeding tube full-time - so she didn't get to have any birthday cake this weekend! She's using five to six cans a day of the Nutren liquid supplements. She seems to feel better, to have a little more energy and she thinks her hair is growing faster :) If she keeps her mouth closed she occasionally has slight pain, but it is about a "six out of ten" pain if she tries to eat or talk. It really is strange going days without hearing a word out of her - but at least she can still smile!

Today she was having nausea on the way to and from the radiation appointment. Sometimes just getting up out of a chair can cause nausea, so taking the subway often sets her off. She just pauses for a moment on the street and then she's ready to go again! In the radiation therapy waiting room she tends to be the "senior" patient these days. We've seen many folks finish up their course of treatment and we've also seen a lot of new people who are just starting out on their radiation plan.

Robin's brother Mike will be arriving next Monday from England, just in time to head back home with us Tuesday! We've already started planning what to bring home this weekend, and what we'll need to leave for the last few days next week!

She's not talkin'

Early this week Robin was still talking, but she would do it through clenched teeth. One day I noted how amazing it was that we've been together for months now, twenty-four hours a day, seven days a week and yet we've had no friction between us the entire time. With her clenched teeth she muttered "that's because I don't talk much anymore" :)

Things have been getting tougher the last few days. Robin started using charades to communicate, after a few fumbled guesses each time (on my part) she would speak some words thru clenched teeth to clarify what she was trying to communicate. Today she simply began writing on a notepad which seemed to work OK. At the end of the day she tried to say a three-word sentence. I don't know if it was the increased swelling and pain, or the fact she hadn't spoken all day which caused it to sound completely mumbled. I did eventually guess the message, but it's obvious her ability to speak has decreased significantly.

She has some gel-style lidocaine (similar to what the dentist uses to numb gums) which she spreads on her tongue and her inner cheek with a q-tip. She's been using that more often throughout each day. Plus she has increased the amount of food she takes in through the stomach feeding tube (versus simply eating regular food). Early this week she started taking two cans a day (200 calories per can) and today she used three cans - it's easier for her than trying to chew even something as soft as macaroni & cheese or sipping a fruit smoothie.

On a positive note, on the way to her appointment today she was walking a little faster, so she's got a little energy back!

Things are looking up!

Next week is the last full week of radiation - then just two days the week after that!

Doldrums

Doldrums: An area of low pressure near the equator where the average winds are slight. Early sailors named this belt of calm the doldrums because of the low spirits they found themselves in after days of no wind.

Yikes - guess we've hit the doldrums! Robin's energy continues to be low. Today she went out only to go to her radiation therapy appointment. This evening we started watching "Hellboy" on TV - a guys "comic book hero" action movie. I went out for an hour to take a short walk and pickup some groceries and when I came back the same movie was still on the television. Robin didn't even have the energy to change the channel while I was gone! ;)

It's even hard to get a smile out of her these days, though it's still there! We can sense that we're nearing the end (we're about 70% through) and Robin focuses each day on the number of treatments remaining. This morning we asked the radiation oncologist about finishing early but he implied we're going all the way to November 7th.

We had planned that we could stay in New York a few days after radiation completes in case she needs time to recover, but I think we won't hesitate to get packed and get headed home as soon as possible! We're already lining up appointments through the end of the year: two pre-surgery meetings next month, one post surgery follow-up in December. If they do perform reconstruction in December, then there will be several follow-on procedures to finish up the dental work - potentially March and April of next year!

Slugfest!

Whew -"slug on the couch" that is! We don't know if it's the fatigue setting in, or just the after effects of Monday's chemo, but Robin has been a super slug the last couple of days. Her body must need all this time to recuperate!

All morning I kept talking about how we could go for a walk around the block. An idea which Robin supported, but she seemed content to continue to watch TV. I knew she was wiped out when she offered me the remote and then she started watching the shows I picked on TV. We settled in to watching "Megaprojects" and then "Extreme Engineering" on the Discovery channel - shows she never would sit through at home - there would be too many other things to do around the house! She looked as if she was using all her powers of concentration as we watched the building of the "Hoover Dam Bridge" in Arizona. Then with five minutes to go in the program she must have been overwhelmed - she finally leaned over on a pillow and fell asleep.

Hey, I'm all for having an afternoon of rest - but a whole week of it is starting to make me jumpy! ;)

The Chemo Lifestyle

This has been Robin's week so far - lot's of sleeping. She's had a constant low level of nausea but it hasn't been as strong as past treatments. Our typical day is just getting her to radiation then she naps much of the day. She actually seems to have been getting better over the past couple of months (instead of getting sicker as the doctor's expected) so we can't wait for her to get over this last chemo treatment. She's still doing well with respect to radiation - not too much pain or fatigue!

Someone asked if we've seen all the city sites by now. Actually we haven't seen any. We've managed to get to Central Park about three times to walk and to see the zoo, but we've only seen maybe 20% of the park. At this rate we'll have to come back to the city some other time to see anything...

Chemo #4 (maybe the last course for her!)

Robin was admitted to the hospital yesterday morning and received a four hour IV of Cisplatin. She tends to be so strong about everthing these days - but just the thought of getting chemo makes her feel anxious! She finally settled down in the afternoon after the process had begun.

She slept most of this morning at the hospital until they finally checked her out at noon. We went directly over to the Radiation Therapy suite where she received her daily treatment. Since it is Tuesday she also met with Dr. Harrison (the Radiation Oncologist) who noted that he's very pleased with the rate at which the tumor has been shrinking. It's now the size of a pea! The progress has been so good that Robin might even finish up prior to November 7th!

If she finishes anytime prior to November 6th then there is no possibility for her to get a fifth course of chemo. When she realized she might not have to do another course she had a HUGE grin on her face!

We got back to our apartment around 2:30pm and she's been asleep ever since. Guess her body is taking time to recover from all the treatments in the last 36 hours! We're very excited - she's only experienced a slight bit of nausea so far!

Michael J. Fox, Lucky Man

Michael J. Fox has a different disease - Parkinson's - which is a degenerative neurological disorder with no cure. Drugs have been developed to manage the symptoms however they do not stop the disease from progressing. In his memoir, "Lucky Man" he writes:

"Coping with the relentless assault and the accumulating damage is not easy. Nobody would ever choose to have this visited upon them. Still this unexpected health crisis forced a fundamental life decision: adopt a siege mentality - or embark on a journey. Whatever it was - courage? acceptance? wisdom? - that finally allowed me to go down the second road (after spending a few disastrous years on the first) was unquestionably a gift - and absent this neurophysical catastrophe, I would never have opened it, or been so profoundly enriched. That's why I consider myself a lucky man."

http://www.michaeljfox.org/

Lance Armstrong

The follwoing two excerpts are from the book "It's not about the bike: My Journey Back to Life", by Lance Armstrong:

---------------------------------
I wanted to live, but whether I would or not was a mystery, and in the midst of confronting that fact, even at that moment, I was beginning to sense that to stare into the heart of such a fearful mystery wasn't a bad thing. To be afraid is a priceless education. Once you have been that scared, you know more about your frailty than most people, and I think that changes a man. I was brought low, and there was nothing to take refuge in but the philosophical: this disease would force me to ask more of myself as a person than I ever had before, and to seek out a different ethic.

A couple of days earlier, I had received an e-mail from a military guy stationed in Asia. He was a fellow cancer patient, and he wanted to tell me something. "You don't know it yet," he wrote, "but we're the lucky ones."

I'd said aloud, "This guy's a nut."

What on earth could he mean?"

---------------------------------
[I] had no idea where to draw the line between spiritual belief and science. But I knew this much: I believed in belief, for its own shining sake. To believe in the face of utter hopelessness, every article of evidence to the contrary, to ignore apparent catastrophe - what other choice was there? We do it every day, I realized. We are so much stronger than we imagine, and belief is one of the most valiant and long-lived human characteristics. To believe, when all along we humans know that nothing can cure the briefness of this life, that there is no remedy for our basic mortality, that is a form of bravery.

To continue believing in yourself, believing in the doctors, believing in the treatment, believing in whatever I chose to believe in, that was the most important thing, I decided. It had to be.

Without belief, we would be left with nothing but an overwhelming doom, every single day. And it will beat you. I didn't fully see, until this cancer, how we fight every day against the slow lapping of cynicism. Dispiritedness and disappointment, these are the real perils of life, not some sudden illness or catasclysmic millenium doomsday. I knew now why people fear cancer: because it is a slow and inevitable death, it is the very definition of cynicism and loss of spirit.

So, I believed.
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Surgery date booked

At the clinical appointments this week we confirmed dates for a couple of future events. As expected, Robin will receive chemotherapy #4 next Monday and will spend the night in the hospital as an inpatient. There will be one more opportunity to receive chemo on November 6th - on nearly the last day of radiation therapy. Robin doesn’t look forward to the chemo treatments because of the nausea and weakness they impart. It seems ironic that the decision about whether she will receive chemo on November 6th may be based partly on how she is enduring her treatments. If she seems strong, then they will hit her with one more course!

She has also been booked for facial surgery on December 4th - four weeks after radiation ends. You may recall she lost her upper right molar in August when the tumor had dissolved away a portion of her upper jaw (apparently just the tumor putting pressure on bone can dissolve it). The surgery will entail removing some of her upper jaw, verifying that no cancerous cells remain and then rebuilding the area with a bone graft from either Robin's hip or leg. If any evidence of the tumor were discovered during surgery, they would skip the reconstruction and instead create a prosthetic device (kind of like a denture) for her mouth. The December surgery will require about seven to eight days in the hospital for recovery.

We've never backed away from scary questions so we asked "what if the tumor begins to grow again between the time the radiation ends and the surgery is planned". The doctor stated that it would be highly unlikely for that to occur, but if it did they could change their plan.

Bill and Gloria dinner!

Bill and Gloria came into town Wednesday night from New Jersey and we went to one of the best gluten free restaurants in town, Risotteria! We had intended to meet at 2pm and spend the afternoon together, possibly walking around a park. Instead the forecast rain came in early, and Robin's Wednesday appointments went about four hours longer than planned. We did manage to spend dinner together and then we shared a long slow cab ride (it was raining -and- rush hour)! The slow ride allowed for some extra time to talk with Robin before Bill and Gloria headed out of town!

Half way!

Today Robin finished radiation treatment #17 which is halfway to November 7th (35 treatments total). Robin's been holding up better than average, and everyone we speak to seems surprised that she's still eating mostly solid (or rather solid soft) food.

The right side of her tongue has several blisters. Apparently her tongue is in the field of radiation so it is purposely exposed to a small amount of radiation each day. Unfortunately she has fillings in her teeth. As the radiation passes through her cheek the portion which hits her fillings gets scattered in many directions. Her tongue and inner cheek which are nearest the fillings end up getting more radiation than planned. The last two treatments they've begun having her insert gauze between her tongue and teeth to increase the distance, thereby decreasing the amount of scatter to her tongue. Robin already wears "dental trays" (they look like a boxer's mouth guard) during radiation so she hasn't really found a comfortable place to fit the gauze in there yet.

She says that she only feels pain when she's talking, or when she is chewing food, so she's speaking less. We have occasional fits and starts of her trying to do charades and then finally telling me what she's trying to communicate. I get the sense that if I don't get better she's going to cut back on speaking anyway. We're thinking of getting one of those kids toys on which you can write and erase words easily - kind of like etch-a-sketch!

Monday, morning sickness

While getting ready for Monday's radiation appointment Robin broke out in a couple fits of vomiting. You can see it coming when she covers her mouth, furrows her brow, and makes tracks for the bathroom - she felt nauseous all morning long. We each speculate on the cause, Robin attributes it directly to receiving radiation. I attribute it to the weekend off from radiation (because I've read about patients who didn't experience nausea until after their treatments had ended). It's odd how we individually try to make sense of what's going on around us, reaching the same conclusion but with different rationalizations.

So today becomes a taxi ride to the clinic. Mostly we've been taking the subway, but when she's not feeling well we simply walk fifty feet out to the corner and hail a cab. Due to the holiday it turns out to be only a fourteen minute cab ride - ridiculously quick compared to average twenty-four minute taxi ride in normal traffic.

On the way back Robin was feeling up to taking the subway. We have tried a couple of options the last few weeks. If we're up to a long walk (almost mile) and lots of stairs up and down then we can take a train directly back to Times Square and hoof it back to the apartment. We've pretty much given up on that route because of the athletic effort it requires (all those darn stairs!). We can walk half the distance and only have to take two flights of stairs if we're willing to transfer from one train line to another part way through the trip.

On our return this morning the first train that arrived at the platform was loaded with folks coming to Union Square. So many people got off that it took longer than normal for us to get onto the train. As I reached the center of the car I toyed with the idea of not holding a handrail (wouldn't that be cool). Suddenly the train lurched forward and as I realized I needed a handhold I also saw Robin - just about to sit - now starting to fall over from the acceleration!

Without conscious thought my right hand grasped the nearest rail and my left hand reached impossibly far and latched onto Robin's left arm. I can remember wondering if I was going to pull her arm out of the socket. Once we'd recovered and laughed it off I muttered my standard phrase these days - "Don't worry - I've got you covered". It's a good thing that the positive power of the Universe (including all you folks) is looking out for the two of us! :)

What a weekend!

Robin's got more energy than she has had in a while. We walked quite a bit Saturday with Corry and Michele, going thru Times Square and walking through part of Central Park. Sunday was a rest day. After one trip around the block for bagels Robin was napping all day!

Hello from Robin!

Robin says: "Everyone keeps telling me how good I look for going through chemo and radiation and I attribute that to all the continued positive energy and prayers! Keep up the good work - it's helping!" :)

Thanks, Robin, C.S. (cancer slayer)



(This picture is from 9/11/06. Don't recall if we posted it before...)

Radiation Exposed!

Here's the daily radiation routine:

1. Getting onto the table.



2. Getting bolted down! This prevents her head from moving and ensures the radiation hits the same place every day.



3. The mask has alignment marks. You can also see the cut outs they made for her eyes.



4. Going up! Now they raise the table so the radiation head will be able to rotate all the way around her.



5. She's all setup. Time for everyone not being irradiated to leave the room! The door to the room is solid and about five inches thick. The technicians can see Robin via closed circuit television. If she ever feels uncomfortable (starts coughing or heaving) she can raise her hand and they'll stop.



6. Here's what Robin sees once she's ready to go. (To take this picture I laid down on the floor and pointed the camera straight up.)



7. The mask fits pretty tighly, so afterwards she has an impression on her face for about 20 minutes. She's been bragging about how much hair she has - I've offered to make her an appointment for a haircut when she's ready :)



The inside of her mouth is starting to feel more sore this week. In addition to the lidocaine mouthwash, now she has lidocaine gel which she can put directly on sore spots!

Afternoon at the Zoo!

Sunday we had walked all the way to Central Park but Robin ran out of gas by the time we got there. Monday we got smart and took transportation to and from the park so Robin had enough energy to see the kids zoo! We saw penguins, a polar bear, otters, turtles and the seals being fed! It's the most fun she's had in months!

That was enough activity for her whole day!

Walking to the Park

Robin has been feeling pretty well lately. The last three days she has visited many folks: our cousin Christy in New York on Thursday, friends Joe and Carol back at home on Friday, and Sharon (her sister) and Ed Saturday. Robin usually has enough energy to visit for an hour then she typically needs a nap!

Today we walked from Times Square to Central Park (43rd street to about 60th). We rested on a bench for half an hour and then we rode the subway back. Robin was fine until we had just one block left to walk, that's when she starting throwing up. Luckily she carries around a plastic bag with kitty litter in it so we just stopped momentarily while she did her thing. When she was done she shook up the bag (looks just like a cat's done their business in there!) then she gave me a weak smile. She says that because of her positive attitude she can still smile right after being sick! She spent the rest of the evening laying in bed. I rubbed her feet and head for about thirty minutes then we talked for a while about how we've been handling the cancer experience (we think we're handling it pretty well so far!). She's a lot more animated these days so it was nice to be able to hang out together and talk.

The last thing we did for the day was reply to a list of questions from our niece Jessica. Jessie's writing a journalism article for a high school class and asked if Robin would be the subject of her paper. I read a list of prepared questions to Robin and then typed her responses.

Here is Robin's response to question nineteen "How does it feel to be one of very few women in the world with this disease?" Robin: "Very special. I look at it as an opportunity. An opportunity to see where it's going to take me. Because it's going to change my life. It already has. I think it will change things in a positive way. So many good things have happened already - support from friends and family. I always look for the silver lining in the clouds. I prefer to take negatives and turn them into positives so that's what I'm doing with cancer. I've already met a lot of wonderful people."