Kindness is Contagious

Late last week Susan, Barb and I were at the cancer center for my injection. It was a packed house. We had never seen it so full.

We took the last couple seats besides one odd seat here and one odd seat there. Just then an older couple walked in. Their walking was both a little challenged. She was assisted by a cane. They scoured the full room and decided to stand and prop themselves up against a wall.

I squished into the love seat that Barb and Susan were already sitting on and waved to the couple to join us in the two-open chairs this move made.

The wife noticed my waving and brought her husband's attention to it. But he shook the offer off.

I was a little flustered. I wasn't happy seeing them have to stand. I thought I'd take a different approach. I went to the ladies at the registration desk, who know me well. I wanted to let them know that they had people standing out here and maybe it might help to toss me through my five-minute treatment and just get me out of here.

It turns out that they had an "emergency" in the chemo room and someone had a bad allergic reaction to their chemo. I'm sure my face said it all. This put a new perspective on everything.

On my way back to join Barb and Susan on the love seat (it was cozy) I pulled the two stray seats together, away from the wall, and placed them nicely around a coffee table. Again I tried to wave over the couple that was left standing.

I saw the wife bring attention to the seats again to her husband. He shook them off. He wanted nothing to do with it.

Well I did all I could. I tried. It was a little strange.

Most of my life I probably would have just ignored them, I'm ashamed to say. Obviously I have some company because everyone else in the waiting area was working very hard not to notice any of this, or anyone else for that matter.

Eventually the wife did ditch her stubborn husband and came over to sit down on one of the chairs I made available. She quietly picked up a magazine and kept to herself.

I guess acts of kindness are important whether they're acted upon or not. In the big picture one act of kindness eventually leads to more, by others, by yourself. It becomes contagious, in time.

Yesterday a neighbor stopped by our backdoor and asked if he could rake our leaves for $15. I was struggling to think of a way to get that done. He worked his butt off, did a great job. Barb gave him $25.

Two Steps Forward, One Step Back

After noticing that my Dad was retaining fluid through his chest and into his ankles, my Dad's doctor ordered a CT scan which showed some fluid on his lungs. Yesterday my Mom was going to follow-up to ensure that an appointment was being made with a pulmonary specialist.

My Mom seems to feel confident that my Dad's issue can be handled with the right medications if they get in there and figure out the cause of the fluid retention. My Mom had my Dad at the house on Saturday and all reports were that it was a very good visit. I can't blame him for a second. It's good to be home.

But as I know all too well, it's often two-steps forward and one-step back when you're on a health-related journey. It can be a roller coaster ride.

I've come to learn that the Interferon that they have me on is certainly named appropriately, "Interfere On" everything. Every night after the injection earlier that day I get intense chills. Then later I get night sweats, small headaches and difficulties sleeping. My digestion becomes all screwed up and eventually I will have strong fatique and aches all over. How's that for well covered?

When my Mom had my Dad at the house, she called me and put my Dad on the line. It was great to hear from him of course, although my Dad and I aren't two of the bigger phone gabbers in the world.

I realized that a lot of the issues my Dad was working with I was working with too. Sometimes the simple routines of life proved a little challenging to keep up with.

Tomorrow I have my fifth Gamma Knife treatment. I'm setting new records there. Even doctors are surprised when they hear that. Ugh. Thursday I'll meet with the oncologist to ensure that the local oncologist and the doc from Sloan-Kettering compared notes. We'll see how it goes.

Thoughts in Florida

When I was a real little tyke I apparently couldn't say Martha so I just said "Muk," in reference to my Aunt Martha. In our family it stuck and Muk she became and still is to this day.

Muk was always like a second Mom to me. Even though the Putnam family spent much of their lives working in Saudi Arabia, Muk always kept her family ties to Myerstown very close. Muk is very thoughtful, exceptionally kind, with the biggest heart of anyone around.

In college I would receive notices from the post office now and again that I had a package waiting for me. Curious I'd speed down to the post office and find a shoe box sized package wrapped in plain brown packaging paper. It would always be from Muk. It would be a shoe box filled with homemade brownies or banana bread. It was awesome! When you're living on chili dogs and burritos nothing hits the spot so well as a box of Muk's homemade goodness!

I can't tell you how many smiles Muk has brought to so many people just by taking the time to send a simple card. I know from experience that a card from Muk would seem to show up just in time, when I needed a smile most.

I would visit Muk often when her and Rhea had retired to the Eastern Shore of Virginia. She had rules. No man and woman could sleep together unless they were married. Everyone who stayed for a couple days or so had to swim laps in the pool everyday, kids, adults, everyone. A chart on the fridge tracked daily swimming accomplishments. She was great that way.

A teacher in an American school in Saudi Arabia, a golfer, a tennis player, a housewife extraordinaire, Muk will always occupy a huge part in my heart. This weekend she celebrated her 80th birthday with many close family members traveling to Florida to shower HER with cards.

HAPPY BIRTHDAY MUK! Barb and I love you much!

Our thoughts are also with Lou and Doris in Florida this week. Lou is preparing for shoulder surgery. Lou and Doris are also very special, unique people. Doris's heart is as big as the day is long. And Lou? Well how many people do you know who stop their bride halfway down the aisle to sing to them? Lou is that kind of special.

I have no doubt that Lou will pull through the surgery well. He's a tough guy. But I also know he's a typical stubborn male gorilla like me, so I ask him to practice patience with his recovery time. It's something I have to be reminded of myself quite often.

Oh, and to all our friends and family in Florida...it's 41-degrees up here and I'm extremely jealous!!! lol (pouty lip)

The Big Picture

There is little doubt that Memorial Sloan-Kettering is like a Holy Grail in the world of cancer care. As soon as I returned all the nurses in Lancaster approached me with questions about what it was like.

It is a very professional place, set-up meticulously and extrememly well organized. First I had to be registered. Then I was issued a member card so I could go straight to my doctor's office in the future. Then I met with a very well-versed nurse. Then I finally met with the doctor. It was obvious that the whole event wasn't being timed to see how fast I could be run through the machine. I was a mission and the Sloan-Kettering team were dedicated to giving their best to that mission. I appreciated that.

If I have one complaint, and I do only have one complaint, I wasn't fond of having to recap my total cancer history four separate times. I had to gather my entire treatment history and forward it to Sloan-Kettering before they would even consider seeing me. When I registered I had to rewrite my cancer history once again. When I met with the nurse I had to review it with her in great detail. Then when I met with the doctor I had to once again go over my entire cancer history.

We worked hard, with the help of Lancaster General, to compile my entire history before the appointment was made. I never anticipated that I'd have to have my extensive cancer history committed to memory to repeat over and over and over again.

But in the big picture I'd rather have the doctor and his team err on the side of an abundance of information than very little information. This doctor definitely took a great interest in everything, from how the cancer was originally diagnosed up until today with the cancer spread throughout my body.

The doctor and I did discuss a somewhat philosophical subject that I had discussed recently with my local oncologist as well. It gives me, and my "team," things to think about.

Both doctors now have explained to me that we are reaching a point where all the doctors are truly doing through further drugs, and through radiation, is beating me into a pulp. Chemotherapy is poison. Radiation is poison. Everything in cancer care is meant to kill the cancer, and just stop short of killing you. After more than three-years of chemo and radiation both of these doctors have now explained to me that they are concerned that their treatments will do more to make me suffer more than anything else.

I understand what they're saying.

Both doctors have told me that ultimately it is up to me. If I choose to continue getting beat into a pulp they will oblige. But they want to make me aware, as the doc at Sloan-Kettering said, "Quality of life may be more important than quantity of life."

It's exactly how kidney cancer was advertised to me from the very beginning. I've always known this. It's an interesting issue. It's an issue I wanted to share with all of those who have incredibly built up such magnificant support around me.

It's not a question I face today. It's more of a looming question that I must consider moving forward. There doesn't have to be a "yes" or a "no" as an answer either. It can be hedging across borders.

I am very curious though how others would interpret this question.

I've always felt that I was compelled by God and by my faith to treat my body as well as possible, like a temple, until called by God. I've always thought that we are meant to continue our Earthly lives through all troubles and tribulations. I've always felt that we all had our crosses to bear and bear them we must.

This is why I've kept up this fight. People are not supposed to be on chemo for more than three-years, or have five Gamma Knife treatments.

But here I am, a piece of Swiss Cheese or not.

New York - Part 3

On Monday Susan, Bill, Barb and I all got ourselves ready, grabbed a cab in front of the hotel and made our way toward Memorial Sloan-Kettering where I was scheduled to meet with the doctor.

Getting a cab in front of the hotel is as easy as it gets. Cabs troll in front of the hotel just looking for any hotel guest that needs a ride. Cabbies "live" in their cabs and apparently only take showers or baths occasionally. So each cab is filled with the fragrant aroma of the cabbie himself.

Again there was a language barrier. But the cabbie seemed to recognize something we said and took off.

Sloan-Kettering is actually a series of buildings in one general area. There is an overall hospital, and there are individual buildings for different types of cancer. We were looking for a specific building that was solely for kidney and testicular cancers. The cabbie dropped us somewhere in the middle of the Sloan-Kettering complex of buildings. We knew we were close. But we were lost.

One of Susan's great talents for the group was as our spokesperson. She was the representative of our group to New York City. We stumbled about, looking aimlessly around for our destination, when Susan took charge.

A lady passed Susan and she tapped her on the shoulder and asked her if she knew where Sloan-Kettering was. The lady turned around, startled looking, and she wasn't a lady at all. It was Mick Jagger!

Now it wasn't actually Mick Jagger. But it was the closest thing to Mick Jagger I have ever seen, and it obviously was no accident. The picture I cannnot get out of my head is Susan and Mick Jagger both seeing each other for the first time. Susan was startled at the site of Mick, with good reason. Mick was startled with Susan because Sloan-Kettering was just across the street and because you're not really supposed to talk to people on New York City streets.

That meeting is an image that will be locked in my brain forever. I wish I could share it with you. Every time I think of it I get the biggest smile. It's the highlight of my trip. Hey, I'm a simple guy.

Mick had shown us the way. We crossed one street and there was the Sloan-Kettering building where we needed to be.

(Part 4 Tomorrow) Overall Sloan-Kettering Review

New York Part 2

I am incredibly thankful that Barb's Mom and Dad joined us on our trip to New York. They gave us a wider base to stand on, if that makes sense, firmer footing, a couple good friends to turn to amongst the millions in the big city.

I think we all agreed that the trip was conducted well. We did not want to have to endure too much traveling all in one day. So Sunday was all about getting to our hotel in New York. Monday was all about meeting the doctor at Sloan-Kettering. And Tuesday was all about getting home.

Our train came into Penn Station on Sunday late afternoon and our first challenge was finding our way out of Penn Station. I think somehow we walked the length of the facility before we somehow popped out on a very crowded street.

We just wanted a taxi to the hotel.

Some joker decided to help us hail a cab, for a tip of course. Problem with the cab drivers seemed to know him and seemed to be ignoring him. Susan and I started trying to hail a cab as well and he started to compete with us. He was shady. But eventually he did get us a cab and we were heading north through the city.

I'm sure everyone knows this, although it still seems a little strange, but no cabbies in New York speak English. You have a weird conversation and the cabbie takes off and you just can't believe that there was any understanding of where you want to go...but then somehow you get there.

On the way to the hotel our cabbie endlessly talked to his girlfriend on the phone while we whizzed in and out of cars and through side streets. I didn't think there was any chance we would reach our destination...and then...poof...he made one turn and we were there.

I asked for two rooms as far away from the street noise as possible. We landed on the 15th floor. Everything was clean. The staff was kind and professional.

By the end of the trip we had all commmented about how polite the people in New York had been. I think we were all a bit surprised by this. Wouldn't you be? Our hotel was on the Upper East Side, in a residential neighborhood, between Central Park and the East River.

Barb and her parents went out for a walk one morning and visited the East River.

"How was the river?" I asked Barb.

"Stinky," she replied with a scrunched up face.

(Part 3 Tomorrow) Susan asks Mick Jagger for directions.

Back From the Big City

We've virtually just landed back here in Marietta from our trip to New York City. We immediately have to get ourselves together to run out to the Lancaster General Health Campus to meet with the nurse practitioner and have an injection of Interferon.

We're still trying to decrompress from the trip, and start to unpack our suitcases. We're still trying to get used to sleeping on the second floor (of our house) rather than the 15th floor (of the hotel).

There's a lot of stories to share from New York. But with little time this morning I should share the main story and then follow with others.

Barb and I did meet with the kidney cancer specialist at Sloan-Kettering. He was a very young guy, but he was obviously suited for his prestigious position. The doctor was very sharp, and certainly had skills both as an academic and as a physical, hands-on doctor.

We spoke of all kinds of different things. But here is the bottom line:

- because of the spread of the cancer to my brain I am not eligible for any clinical trials

- if cancer will stay out of my brain for at least three-months I WOULD be eligible for clinical trials

- there are two FDA approved kidney cancer drugs out there that I have not tried yet.

The doctor at Sloan-Kettering was planning on contacting my oncologist here in Lancaster today to discuss these options.

There is much more to discuss as time permits. But that is the main response we received from the expert in New York.

There are some fun stories from New York too, like when Barb's Mom asked Mick Jagger for directions on the street.