Mets Day 596 - Giving Thanks

I told the family that this might be the last Thanksgiving that all of us are together -- not because of my cancer (although that is a reality), but because Chelsea, Josh and Rose may move to Utah next summer, and it would be unlikely that they would fly back to DC for Thanksgiving, or all of us would go out there.  Perhaps because of that, it was a very mellow holiday.  We played several family games, Josh made creamed carrots, candied yams, and homemade rolls, Jennifer did her usual great job with the turkey and stuffing, and we enjoyed our meal.  We watched some football, talked, took turns holding Rose, and felt the triptophan kick in. 

We have a Thanksgiving tradition of going around the table with each person naming something for which they are thankful.  No one can repeat something that has already been said, and the first one unable to say anything or give up has to do the dishes.  It's a great way to hear what each family member comes up with:  everything from God and the Plan of Salvation, to fractals and hot water.  I was interested to hear that there were far fewer naming of tangible things, and a more frequent naming of relationships and intangible things.  Stuff does not make us happy; it is the love and friendship that comes of long-lasting and trusting human bonds.   I am thankful for my wife, my children, my son-in-law and granddaughter; my extended family; my friends; my faith; and each day that my life is prolonged. 

Mets Day 593 - Cruise Recap

Friday November 15

Jennifer and I dropped Garrett off at his 6 am church class, then headed north to NYC.  We were planning to spend the day in the city, see a show, then get on the ship around midday Saturday.  We left the car at Metropark in New Jersey and took the commuter train to Penn Station.  We checked into the hotel (elements by Westin at 39^th and 8^th, using our SPG points, natch) at 10:30 am and were pleasantly surprised that there was a room ready.  We didn’t have much of a plan for the day, and ended up meandering through midtown.  We ate Korean dumplings at Mandoo Bar, then caught the IRT to the financial district.  We spent some time at the 9/11 Memorial Site, paused by the names of friends who had died on that awful day, stood in the shadow of the survivor tree, and reflected on the preciousness and unpredictability of life. 

We headed back to midtown and happened upon a Crumbs bakery, so we of course had to stop and sample the offerings.  Halfway through my thin mint cupcake, Jennifer informed me that it had 950 calories.  She knows how to kill my joy.  Heedless of the risks, I plunged on.  I staggered back to the hotel in the early stages of a serious sugar coma and recuperated on the bed.  We were not that hungry before the show, so we stopped by Chipotle for a quick bite. 

I had not told Jennifer the name of the play, but just before arriving I told her it was a Spanish play called Once (pronounced OON-say).  It took her a little while before she figured out I was pulling her leg.  The show was almost like a concert, with the small company singing and playing guitars, violins, and other stringed instruments, while weaving a boy-meets girl story set in Dublin Ireland.  It had minimal props, unlike most Broadway productions, allowing the music and story to flow unhindered.  We quite enjoyed it. 

Upon returning to the hotel, I mentally ran through the departure checklist for tomorrow and realized we had forgotten to bring our passports.  Oops!  I had electronic versions of our declarations pages available, and knew we could print them at the hotel.  I called the cruise line and was told that they could not assure that we would be permitted to board without our physical passports.  I researched options for immediate delivery of documents, and found that Greyhound had a delivery service – all we had to do was get someone to deliver the passports to DC’s Union Station, pay $22, and 5 hours later they would be at NYC’s Port Authority.  Good deal.  We got hold of son-in-law Josh, who agreed to drive to Union Station.  Crisis averted.

Saturday, November 16

Josh called at 1:20 am to report that he was at Union Station, and no one was at the delivery desk, even though Greyhound’s web site said it was staffed 24/7.  The Greyhound ticket agent was clueless, he said, and added that, without a delivery ticket, the bus driver would not take an envelope containing two passports.  Josh asked various passengers if they would be a courier, but found no takers.  With no other alternatives, Josh proposed that he drive north and I drive south and meet each other halfway.  Off I went to Penn Station to catch the next train to Metropark, then headed south on the Turnpike.  Josh and I met up at 4:10 am in southern NJ, then we each turned around and headed back.  I got to the hotel at about 7 am, about the same time Josh pulled got back home.  Sleep is overrated anyway. 

I tried to doze for a few hours, then we roused ourselves for a quick breakfast and headed to the pier.  We found a long line waiting to check in.  The Coast Guard had decided to make a surprise inspection of the Norwegian Gem, thereby delaying embarkation.  We boarded at about 1 pm, dropped our bags at our room, then went up to the spa to arrange for unlimited access.  We were told that the spa would open as soon as the ship sailed, so we headed back to the buffet for a leisurely lunch.  As soon as the ship blew its horn for departure, we headed back to the spa.  We knew from our experience during our Europe trip on the Gem’s sister ship that the spa would be our primary destination while on board.  We watched from the spa’s forward windows as we sailed down the Hudson into New York harbor.  I thought of all the ships and people who had arrived or departed from those piers:  troops going off to war in Europe and returning home; immigrants (including my mother’s family) craning their necks for a glimpse of the Statue of Liberty as they sailed in the harbor and processed to Ellis Island; colonists filled with excitement and trepidation; the Italian explorer Verazzano as he first mapped out the harbor.  The setting sun reflected off 1 WTC, newly crowned as the tallest building in America at 1776 feet high.  As dusk fell, we sailed under the Verazzano Narrows bridge and into the open Atlantic. 

The Gem’s spa is larger than the Jade’s (the ship we sailed on this summer out of Venice), and has a large common soaking pool with two huge faucets that, when you push a button, spews out a wedge-shaped line of 100+ degree water with the force of a power washer.  Standing under that while letting it pound on your shoulders was like getting a very powerful massage.  Both Jennifer and I lingered under our respective faucets, moving our backs so the water spray would pound up and down our backs.  When we had our fill of that, we alternated between the hot tub soaking tub, the heated stone recliner chairs, the lounge chairs, or withdraw to the gender-specific areas for the sauna, steam room, and individualized whirlpool tubs.  What a wonderful place to relax. 

Sunday November 17

I expected to sleep well last night, since I got no sleep the night before.  What I didn’t count on was being so tired that I would not awake when all the Diet Pepsi that I drank on board started to leak out.  I ended up stumbling to the bathroom, grabbing a towel to throw on the bed over the wet spot and falling back asleep.  In the past couple months my nocturnal incontinence has been largely under control because of the imipramine, so I have not been consistently wearing pads.  Oh, well, good thing we have a cabin steward to change our beddding. 

Today and tomorrow are sea days – no ports of call – so R&R is the order of the day.  More accurately, eat, spa, nap, eat, nap, spa, nap, eat, and maybe go to the evening show.  I’m certain to gain weight on this cruise, but one of the few advantages of having Stage 4 cancer is that I don’t care. 

I got up at about 7:30 am.  Jennifer was sleeping deeply so I put on my swimsuit and t-shirt, slipped out of the cabin and went up to the buffet for some food and await the 8 am spa opening.  One of the cooks made me a surprisingly good omelet, and I found a quiet corner and ate while watching the sea.  Now that we are in the open Atlantic, the ship has a distinct rocking motion, far more pronounced than the Med or our prior Caribbean cruises. 

I was one of the first customers in line for the spa at 8 am, and ended up staying there for more than three hours.  Jennifer showed up at around 9 am, having enjoyed her sleep in.  I noticed that my shoulders were sore, and once I went under the blasting faucets I deduced that I might have overdone it the night before.  Sometimes leisure demands sacrifice, so I experimented with different positions for the water flow for the maximum effect.  Of course, I had to rest from all of my labors, and the heated stone chairs were the perfect place to do so.  Mary Chapin Carpenter’s lyrics from “To Italy” came to mind:  “What if we spent all of our days, improving our minds, learning new ways to be lazy / It wouldn't be too much of a strain / Relax after breakfast till lunch comes around / Can't wait for dinner, oh, I need to lie down / And refuel, out by the pool.”

Tonight’s show was a comedic juggler named Charles Peachock.  Perfect cruise ship entertainment – he didn’t take himself too seriously, unlike the in-house singers and dancers who act like they are professionals, when they are only slightly better than a high school troupe. 

Spencer ran the Philadelphia marathon today.  We’ve been off-line, so we don’t know how he did.  I am impressed at his dedication to run marathons and Tough Mudders, and am glad that he is remaining committed to his choice of sobriety.  His ongoing determination to fight well his battles inspires me to keep fighting my battles.  

Monday, November 18

Today is another sea day, and largely a repeat of yesterday’s schedule.  Jennifer joined me for breakfast and the morning spa routine.  She brought 5 books with her, and already has plowed through two of them.  I brought one hard copy book and several more on the iPad, and have yet to turn a page.  At some point I’ll do some reading on this cruise, but not yet.  I’m still feeling residual lethargy from the chemotherapy, and find it exhausting to concentrate for extended periods.  I can walk up several flights of stairs and not get totally winded, so that is small progress, but physically I still am nowhere near my pre-chemo form (which was not all that spry to begin with). 

Tuesday, November 19

It takes two and a half days to sail from NYC to Puerto Rico.  Today’s scheduled arrival time in San Juan is 3 pm, so the morning routine is once again a relaxed breakfast, then relax in the spa.  We usually emerge at around noon, nicely poached and ready for a nap before a later lunch.  It’s a hard life, but somebody’s got to do it. 

We had booked a shore expedition to go up the El Yunque National Forest.  I generally avoid shore excursions arranged by the cruise line, as they are overpriced and underwhelming.  But because we arrived so late, I knew time would be short and daylight waning.  We queued up and loaded into minibus for the hour drive out of San Juan and up the mountain into the rain forest.  We spent a while at the visitor’s center, then drove up to El Coco waterfall, a pretty cascade down a nearly vertical rock face.  We left as night fell.  The drive back to the dock seemed much longer than the drive out.  We briefly walked around the old town, realized we were tired and hungry, so made our way back to the ship for dinner. 

Wednesday, November 20

We arrived in St. Maarten at 8 am.  We spent a week on the island in 2007, and have stopped here on two other cruises, so we were pretty familiar with the island.  I’d arranged to rent a car and get away from the cruise ship crowds.  We were glad we did, because there were nine (!) ships in port.  We stopped at a grocery store for some picnic supplies, then crossed over to the French side of the island and headed for Friar’s Bay, a small beach with powdery white sand well off the beaten path that we’d discovered six years ago.  We rented padded chaise lounges and an umbrella, and whiled away the day.  I stayed under the umbrella except for a brief time in the water, since I didn’t want to burn by newly bald head.  At about 2 pm, I noticed I was getting burned anyway – the UV rays must have been pushing through the umbrella. 

We drove to the Minguet art gallery – another place we’d visited in 2007 – and purchased a couple of posters.  We also stopped by the Harley Davidson store so I could get a St. Maarten HD shirt.  With all the ships in port, we ran into heavy traffic getting back to the ship, so it was a good thing that we left when we did.  It was a great day on one of our favorite Caribbean islands. 

Thursday, November 21

Today was St. Thomas.  We had planned on going to Megan’s Bay, but the weather did not cooperate, as it was raining most of the morning.  We took our time getting breakfast, and eventually decided that we’d just spend some time in Charlotte Amilie.  We’d spent several days on St. Thomas and St. John in 2005 or so, and knew the layout of the town.  We ended up buying gifts for each of the kids, while trying to avoid what I called “the German stuff”, aka junkunschloken. 

We returned to the ship in time for a late lunch, then went to the spa for several hours.  Tonight’s show was an occasionally funny comedian named Bud Anderson.  He tooted his own horn a bit too much for my taste, but you get what you pay for.

Friday, November 22

The ship anchored in Dominican Republic waters in a bay off of a town called Samana.  We took a tender to a small island beach called Caya Levantado, where we spent several hours slathering ourselves in sunscreen and basking.  It was a perfectly lazy beach day.  We had to be back on board by 3 pm so the ship could start its two and a half day journey back to New York, 1619 miles to the north.   We headed straight to the spa, where we relaxed some more, then had a nice dinner in one of the specialty restaurants. 

Jennifer has been reading Ender’s Game by Orson Scott Card, and after she finished it, I picked it up to reread it.  I then returned to Ender’s Shadow, which I had read some time ago, as well as the second and third books in the Shadow series.  Not strenuous reading, but perfect for my chemo-addled brain.  I then downloaded the fourth book of the Shadow series (Shadow of the Giant) and have been plowing through that.  It’s great to lay on the heated stone recliners in the spa and read. 

My cancer was diagnosed two years ago today.  It’s been a long two years, and in many ways has turned my life upside down.  I feel like I’m compressing 30 years into three years. 

Saturday November 23

Another sea day and we head back to New York.  I spent more than four hours in the spa – Jennifer came up a bit later – then we found some lunch and took a nap.  The sea has been getting rougher as we sail north in the open Atlantic.  Saturday evening, crossed the boundary of a cold front.  The temperature dropped 30 degrees in about 3 hours, the wind spooled up to gale force, and the waves got steadily larger.  Our cabin is in the center of the ship, so we have the least amount of pitching, but we can still feel the pitching of the 1000 foot ship in the waves.

Sunday, November 24

We woke up to feel the ship moving in the heavy seas.  We headed to the spa located on the 12^th deck above the bridge, and watched as the bow crashed through waves over 40 feet high.  At times the spray reached up to the windows of the spa.  I was grateful that we were on a ship larger than a WWII aircraft carrier.  Even so, it was such a bumpy ride that the ship had to slow down to about 20 knots.  Winds were over 60 knots; walking across the outside pool deck was like walking through a wind tunnel.  The captain warned that we might be latte arriving in NYC tomorrow.  We spent the afternoon watching three NFL games and dozing in our cabin.  We’ve discovered that the brownies that room service delivers are mighty tasty. 

Monday November 25

Our arrival in NYC was delayed by two hours due to the heavy seas.  We got up at about 8 am, packed up (one small rollerboard each), had breakfast, then went to the Spinnaker Lounge above the (closed) spa to watch us sail back under the Verrazano bridge and into New York harbor, with the sun shining on the face of the Statue of Liberty.  

Our delayed arrival made disembarkation a rush.  Even though the first hour was supposed to be for passengers with carry-on luggage only, it seemed that everyone was crowding to get onto dry land.  We shuffled along and finally got off, found a cab and went straight to Penn Station for a train to Metropark.  We were on the road by 12:30 pm, and made good time on the drive home. 

All in all, it was an enjoyable cruise. 

Mets Day 582: Of wills and shortness of breath

Yesterday Jennifer and I executed a series of documents to update our estate plans:  wills, trusts, durable powers of attorney, and medical directives.  We hadn't done anything since we created our first wills back in 2000, and those documents were outdated from both a tax planning issue and for who would be caring for our kids.  It was good to have that done. 

I've slowly been getting better, but noticed that my level of energy is quickly sapped.  For example, this morning Spencer and I were doing a little bit of cleanup in the yard, and after about 10 minutes I was short of breath.   It was like I could not fill my lungs.  I felt that way after chemo, but it was a painful reminder that I'm still in recovery mode.  I'm maybe at 50% of normal capacity. 

I'm so glad that I didn't do the 4th round yesterday.  The idea of spending another day getting poisoned was nauseating.  The cumulative effects of the ddMVAC chemo on my system are ongoing; I only hope that I can slowly regain my strength and have a little bit more endurance.  I'm grateful that I can have the next couple of months to enjoy my family and the holidays, without worrying about whether I can shuffle from the bed to the chair, or wondering if my bowels are working.  It's good to be grateful for the little joys in life. 

Mets day 579 - Living like I'm dying

A few days ago I came across an article titled "Why We Should Live Like We Were Dying" (link here).   Instead of bucket lists, the author focuses upon what she calls a "legacy list": the process of building strong connections, continuing (or starting) family traditions, and sharing memories with your loved ones.  The author speaks of the need to schedule "legacy time".  What is important to each person differs, so she offers some self-assessment questions: 

• What am I doing to lead a life that has the greatest meaning?
• What stories do I want to leave for others?
• What do I do (or have I done) in my life that has been impactful?
• What do I want to say and do with the special people in my life?
• What wisdom and experience do I have that is important to share with my loved ones?
• What kind of legacy did my parents leave for me? What are the best things about their legacy and how can I replicate them? 

She offers a number of suggestions of what might be on the legacy list, including a personal history or collection of memories; favorite recipes; mementos; or traditions.  "The key is to think about how you would like to be remembered. What stories would you like your loved ones to tell their loved ones about you? What examples would you like to set for future generations?"

I think those are questions that are useful to every person to ask themselves, not just those who are keenly aware of their own looming mortality.  A legacy list should not be about death, but about a purposeful, positive, and meaningful life.

I've been considering pulling together a personal history, but it seems to be such a daunting project.  I need to just get going on collecting stories from my life.  There are so many threads to the tapestry of my life, but most are shrouded in my memory, and no one but me knows how it is woven.  Unless I record it somehow, those fragments will probably not be tied together.  I'm going to recommit myself to leaving a better legacy to my loved ones. 

Mets Day 573 - Labs and CT scan results

Today I went to GW for lab work and to meet with Dr. Aragon-Ching.  My counts were consistent with my prior results for one week post-chemo -- low, but basically okay.  I also reported that, after nearly a week of painful constipation, I could report a splashdown from some astronauts.  I told my oncologist how relieved I was to be taking a break from chemo.  I told her how we'd decided to book a last-minute cruise after I'd decided to stop after three rounds, and she was genuinely happy and supportive of my decision.  We agreed to circle back after the holidays to see where we were, unless something bad happened in the meantime.

As of my midday appointment, neither Dr. Aragon-Ching nor I had heard from Dr. Apolo regarding the results of yesterday's CT scan.  That came this evening, when Dr. Apolo called with good news.   She said that the CT scan did not detect any additional distant metastases, including the liver, which was a potential area of concern from the August PET scan.  She said that the node in my neck measured .8 cm, which is essentially unchanged from the 1.0 cm  (10.2 mm to be precise) in the August scan.  Because the CT scan slices at every .5 cm, the difference between .8 and 1.0 cm could be the result of a slightly different CT slice of the node, and she could not definitively conclude that the node in the neck had actually shrunk as a result of the ddMVAC chemo.

We discussed my decision to put on hold further chemo rounds for now.  Dr. Apolo said that I had been tolerating the chemo very well, which was news to me.  She then explained that, by tolerating the chemo well, she meant that I had not required hospitalizations or blood transfusions.  She also said that a full ddMVAC regimen was typically six rounds, and by stopping now, I was not doing the full regimen.  She said that the best possible outcome of ddMVAC was total remission, then immediately added that happens less than 5% of the time.  She implied that, by not going for all six rounds, there was less of a chance of a full remission.  She then said that it was my decision, and she would support my decision either way.

The way I see it, the odds of full remission are remote.  A full remission means that once detectable distant metastases is no longer detectable.  So far, the ddMVAC chemo has not shrunk the node in my neck.  If that hasn't happened after three rounds, it's probably not going to happen after three more.  On the other hand, there has been no additional growth either.  But there is no way of knowing whether that's a result of the ddMVAC, or just that my cancer is taking its time, or divine intervention, or eating Entemann's donuts.  What I am certain of is that, if I were to continue chemo, I'd feel lousy for another two months, I would miss the chance to celebrate my 30th anniversary on a cruise in two weeks, and the holidays would not be nearly as bright.  I'm comfortable with my decision.

Dr. Apolo agreed that she'd do another CT scan in January.  She also said that she had put in a request to have my tissue sample from the biopsy run through NIH's gene sequencer, so we'd have that information at our disposal if and when I have enlarged nodes and become eligible for one of the gene therapy clinical trials.  While gene therapy looks like it is the new frontier for cancer treatment, I hope that my nodes stay small for a long time. 

Mets Day 572 - Constipation and CT scan

Since my last round of ddMVAC chemo on Wednesday, I have been suffering from a bad case of constipation.  I'm passing prodigious amounts of gas, but virtually nothing in the way of solids.  I sleep with a heating pad wrapped around my gut, hoping for movement.  I alternate between the hot tub and the bed, trying to rest.  The night before last I woke up at 2:18 am in pain from the constipation, and could not get back to sleep.  My colon feels like an old bic pen tube loaded with dozens of wet spitwads: no natural force will be able to expel them from their prison.  Miralax and colace have been ineffective.  I even resorted to taking Ducolax, with little effect.  An enema might be next.   

This morning I have a CT scan at NIH.  Hopefully it will fail to detect any spreading of my cancer.  I know the statistics and the virtual certainty that the tendrils of cancer slowly will choke my organs.  Yet I can give thanks for each day that my life is prolonged, ever aware at how thin a reed life can be. 

In times of pain, I am comforted by the small things:  holding my granddaughter; a family game; a kind conversation with my wife; a shared laugh with one of my children.  I wonder if my kids are aware at how a simple smile or a "thank you" can help raise my spirits.  Such small acts of kindness helps teach me to try to be more gentle in my words and deeds. 

Mets Day 570 - Back in the chemo hole

I stayed home from church today to limit my exposure to germs and infections.  I know that I'm at my most vulnerable at this point, with my battered immunity system struggling to recover from the chemotherapy hit.  I can feel mouth sores beginning to develop as my mucosis has been worn away and slow to regrow.  I try to keep up with my hydration, sipping fluids as I can.  My energy level continues to be low.  I'll have to wallow through this trough for another week or so before I see my energy levels start to come back.

Psychologically, it is a huge difference to know that I'm not going to face any more chemo in the near future.  The burden after rounds 1 and 2 of knowing there was another body blow waiting for me was tremendous.  Now that I've decided that I'm standing fast after three rounds, I am surprised at how much of a difference there is in my attitude.  I'm not dreading the next couple of weeks, but instead am focused on getting better.

It also helps that Jennifer and I have decided to take a cruise in a couple of weeks for out 30th wedding anniversary.  Having that reward as a tangible goal gives me something to look forward to, and focus upon.  I feel like I'm shoehorning in experiences and memories in every spare moment.  I am ever so keenly aware of the passage of time, and to try to find the joy in each minute.  Yet, at times, sometimes the best moments are the quietest ones, such as when I was holding my granddaughter last night, after she had finished her bottle, and was quietly dozing in my arms.  Sometimes, the simple pleasures are the most profound.