Mets Day 628 - Out with the old

The holiday season has been relaxing and fun.  It's been great to have all of the kids home for the break, as well as my mom and stepdad here from Florida.  We've kept organized outings at a minimum, since I find herding all of the cats in a single direction can cause more stress than pleasure.  Instead, everyone is able to relax and do what they want -- sometimes playing family games, sometimes reading, sometimes napping, sometimes eating, or sometimes getting together with friends.

We did keep our Christmas Eve tradition of having a honey baked ham for dinner, then everyone gathering as we read the story of Jesus' birth from Luke 2.  Jenifer wanted to watch A Charlie Brown Christmas -- still good after nearly 50 years -- and then we watched A Christmas Story ("you'll shoot your eye out!").  Amazingly, Jennifer said that she never had seen it.  I thought that watching Ralphie and his family muddle towards Christmas was a required part of being an American. 

Christmas morning we also adhered to our tradition that the kids can wake up as early as they want and open their stocking gifts, but if anyone wakes the parents, then that person opens their presents last.  It's worked for 25 years, and I saw no reason to change it, even though Garrett was the only one who was at risk of waking up early.  It's fun to relax and watch as each person opens a present.  I am especially appreciative of how all of our kids seem to be taking greater joy in the act of giving (including the thoughtful consideration of specific gifts for each person) than receiving.  So it is in life. 

2013 ends tomorrow.  I've never been a big fan of celebrating New Year's Eve -- it seems to be a lot of effort for a calendar -- so I doubt if we'll be doing much more than watching a movie or maybe playing a family game.  Happy New Year to all. 

Mets Day 618 - Together for the holidays

In the past week the family has gathered for the holidays.  Jennifer, Chelsea, and Rose returned from the "Rose Tour" in Utah (Chelsea's medical residency interviews apparently were just a distraction, according to other family members).  Kirsten finished her finals at CNU, drove home and slept for several days.  Spencer finished his finals at NVCC and likewise took a long winter's rest.  Garrett's Christmas break starts today.  And on Wednesday, my mom and stepdad flew up from Florida for the holidays.  It is wonderful to have a full house.  Yesterday and today we've been baking and frosting sugar cookies -- I'm doing my part by letting my stomach fix the ones that are broken or are not perfectly frosted.

I've avoided the hectic shopping rush by doing all of my shopping on line. It's fun to look for offbeat and unexpected gifts for other family members. Jennifer likewise shopped via Amazon, and while she was in Utah, I had about a dozen boxes pile up.  I was under strict instructions not to open the boxes she had ordered, but the problem was that all of my orders were to her name, since I used her Amazon Prime account and didn't bother to change the recipient.  So after she got back, we carefully opened the boxes to decide who was responsible for what.  The presents are gradually congregating under the tree, and the low-key anticipation gradually is building.

Meanwhile, my incontinence has started to reappear.  Nothing regular -- I might be dry for several nights in a row, then leak for a night or two.  There is no pattern that I can detect -- it seems unrelated to volume or type of fluid intake.  Just another thing I have to deal with.

Speaking of which, my stamina has not improved by much.  I still get easily run down if I do anything involving physical activity.  I'm going to follow up with my oncologist after the holidays to see if she has any recommendations.  I'm also going to have another CT scan in early January to see if it can detect any further spreading of my cancer.  I find that I spend very little time thinking about my cancer, even though it has reordered my life.  I deal with the fallout, but since I can't control the disease, I don't worry about it.  It is what it is. 

Mets Day 608 - Home with the boys

This week there's nothing but testosterone at home.  Jennifer, Chelsea, and Rose are in Utah for the week, as Chelsea interviews at 4 different residency programs.  Jennifer is the babysitter, taxi driver, and sherpa, and Rose is responsible for drinking the milk and being cute.  With Kirsten at college, only the boys are home -- Josh, Spencer, Garrett, and I.  We've already scheduled a cleaning service to come muck out the place the day before the girls come home.

Garrett has had no school for the past two days due to ice and freezing rain yesterday, and a forecast of up to 6" of snow today (we only ended up getting an inch or two).  We have had a lazy couple of days, sleeping in, reading, Garrett playing video games, going out to eat.  My energy level is still markedly down post chemo.  I wonder how long the residual effects of the cumulative chemo burden will linger on.  I'm so glad that I have not been continuing with the ddMVAC rounds -- I can't imagine how lousy I would feel had I gone through 6 rounds.

I've been mulling whether I should continue on as a partner with my law firm, or take a permanent disability retirement.  On the one hand, I like having the option of returning should my health improve.  Plus, having the ongoing access to the firm's health care is nice (although as a partner I pay 100% of the cost, about $22,000 per year for family coverage).  On the other hand, I wonder how likely it is that I would ever be able to return to work, given the fact that I'm already past the statistical median point of overall survival for those with metastatic bladder cancer.  The head of my group and other partners are encouraging me to keep my relationship with the firm, so they can draw on my experience as needed.  I need to make a decision soon, as my current agreement with the firm only goes through the end of this year. 

Mets Day 605 - Garrett's Eagle Scout Project

Today my youngest son, Garrett, pulled off his Eagle Scout project for the Boy Scouts of America.  He had planned and coordinate the entire thing by himself.  The project was to build a French drain around a large pavilion located in Frying Pan Park, one of Fairfax County's parks.  The pavilion had a 12-sided metal roof and no gutters, so the rain would run off and erode the earth at the base.  Garrett located and identified the project, designed the drain system, obtained all the approvals, then recruited fellow scouts, church members, and class mates to show up and help.

Heavy rains had swept through the day before as a cold front passed through, and Saturday morning it was only 30 degrees with a stiff wind.  Fortunately, the ground was not frozen.  More than 20 people showed up to dig a trench about 10 inches wide and a foot deep, and more than 130 feet around the pavilion.  We brought hot chocolate and donuts, which helped fortify the helpers.  Garrett circulated among everyone, guiding them on what to do and directing all of the efforts.

I found that I was still weak from the chemotherapy -- after a few minutes of shoveling, I was wheezing and gasping for breath.  I took some satisfaction watching Garrett coordinate and direct the work.  He is maturing rapidly, and is overcoming the social awkwardness of mid-teens that is compounded by his Asperger Syndome.

The work moved relatively quickly, and by 1 pm all the gravel was in the trench, the earth smoothed out, and the gazebo swept up.  We were done.  I was so appreciative of everyone who came out to support Garrett.  We returned home muddy and wet.  Garrett willingly cleaned out the car and hosed off all of the tools while I climbed into the hot tub, then took a nap. 

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. 

Mets Day 567 - Round 3 report

Yesterday's administration of round 3 of ddMVAC chemo was no different from rounds 1 and 2.  Infusion took all day.  I didn't have much of a window of feeling ok after the infusion, but immediately felt fatigued.  I climbed in the hot tub when I got home, then curled up around a heating pad.  Sleep was repeatedly interrupted by feelings of nausea.

Today I went back in for hydration today, and got additional anti-emetics along with the saline.  Jennifer took me back home, where I once again alternated between the hot tub and the heating pad.  I'm lethargic and fatigued.  I'm resigned to spending the next week or more being dragged through the quagmire. 

Mets Day 565 - Round 3 tomorrow

I've very reluctantly decided to do the third round of ddMVAC chemo.  I get nauseated just thinking about it.  But I've re-reviewed the literature, and it consistently suggests that multiple rounds increases the ability of the chemo drugs to inhibit the growth of the cancer.  I've also reflected on the advice of my doctor, consulted with my family, and given it some prayerful consideration.  Even though emotionally and physically I don't want to do it, going forward with round 3 seems the right thing to do.

I've also decided that round 3 will be my last round, at least for this year.  I'll have a scan next week, and then have another scan in January, and take it from there.  Knowing that round 3 will be my last round for a while helps somewhat in going forward tomorrow.  I also can look forward to our cruise on Nov. 16 as incentive to get my strength back.  But for the next two weeks, I know I'm going to feel pretty bad.  As one of my friends said to me, it's one thing to be served a [crap] sandwich.  It's another thing to know you've ordered it.  Waiter, oh waiter . . .

Mets Day 560 - debating whether to do round 3

My recovery from round 2 of ddMVAC has been a long slog.  Yesterday I met with my oncologist, Dr. Aragon-Ching, and told her that I was at around 60% -- better than the week before, but still easily fatigued and lacking in stamina.  I told her that I was glad that we already had agreed to push roud 3 off a week, because there was no way that I felt ready to plunge back into the chemo hole this week.  I added that I was trying to decide whether to go forward with round 3 at all.  I was most worried about long-term deficits created by chemotherapy, and whether the chemo burden would permanently weaken my immune system and organs. 

Dr. Aragon-Ching acknowledged that, with each round, the cumulative chemo burden increased.  She could not quantify the risk of permanent damage, but said that it could not be ignored.  She said that my labs were ok, and was glad that my mouth sores finally had gone away.  She agreed that it would be likely that my recovery from round 3 would take longer than round 2.  We decided to leave round 3 tentatively scheduled for next Wednesday, and that I would decide early next week whether to do forward with it. 

We also agreed that I would pause after round 3, and not do any more chemo for at least a couple of months.  I'll have a CT scan in early November, then another scan in January, and we'll see whether there is any progression of the distant metastases.  In the meantime, I'm not going to let chemo ruin what might be my last holidays with my family. 

This weekend, Chelsea and Josh will be blessing baby Rose. In the LDS Church, a blessing is similar to a christening, where family and friends gather to celebrate the new family member.  We'll be hosting several extended family members at our place for a few days.  In addition, this weekend is is Jennifer and my 30th wedding anniversary. We knew we'd have a full house which will be a wonderful way of celebrating. 

A couple of days ago, Jennifer and I spontaneously decided that we'd continue our anniversary celebration by booking a last-minute cruise, departing in mid-November.  We'll drive up to NYC on Friday November 15, catch a Broadway show and stay overnight in the city.  The next day we'll board the Norwegian Gem for a 9 day trip around the Eastern Caribbean.  We'll be home on Monday, November 25.  The Gem is the same class as the Jade, which we took on our Adriatic cruise this summer.  We're looking forward to lots of time in the spa. 

We're unaccustomed to doing something so spontaneous, but now that our kids are largely self-sufficient, we decided to seize the opportunity while I'm still feeling ok.  Carpe cruisum.

Mets Day 555 - slowly climbing out of the chemo hole

Recovery from round 2 of the chemo has taken substantially longer than round 1's recovery.  It's taken me 11 days to feel close to the same point that I was about 7 days after the first round.  I'm at maybe 40% of normal.  Climbing a couple of flights of stairs still gets me winded.  Doing anything involving physical exertion is difficult.  At least I can read for a while, unlike in the week after chemo where the words would fail to penetrate my memory.

I have not yet decided whether I will go forward with round 3.  If I do, it will be my last round this year.  I'm not going to do chemo in November and December.  I'd much rather enjoy what may be one of my last holiday seasons in relatively good health and spirits.

This weekend my oldest son, Spencer, is running his third Tough Mudder.  If you don't know what that is, check out the videos or read about it -- it's a 4-5 hour test of endurance.  I shake my head in wonder.  I am amazed that anyone would voluntarily subject himself to something like that.  Maybe I dropped him on his head too many times as a baby.  Next month, he is running the Philadelphia Marathon -- his second -- with the goal of raising money for the Chris Atwood Foundation.  Chris was Spencer's good friend who died earlier this year of a drug overdose.  Spencer spoke eloquently at Chris's funeral.  Spencer's fundraising page for the foundation is here -- feel free to check it out and donate a few bucks if you want.

I am profoundly grateful that I can spend time with my family, and they with me.  Each day that my life is prolonged is a gift from God, for which I give daily thanks.  Even now, it is too easy for me to let that attitude of gratitude slip away.  Before cancer, I had so little comprehension how the proximity to death makes me so much more grateful for each moment of life, with all of its little joys. 

ddMVAC chemo day 21: this regimen sucks

It's official:  this ddMVAC regimen is really, really hard.  The past seven days has been a lost and wasted week with little positive quality of life.  For the most part I have been unable to eat, sleep, read, move, talk, or even think.  I shuffle from my bed to a chair and ease myself down, breathing hard from the effort of moving 20 feet.  I go upstairs one step at a time, pausing to gather myself before I take the next step up.  I merely subsist, waiting for time to pass and for my body to recover.  There is little I can do to address my impotence, or salve my frustration at being unable to do the things I would like to do. 

Each round of chemotherapy has a cumulative effect, which means that it's harder to recover from round 2 than round 1, and round 3 will be harder than round 2.  There is the real risk that my body may never fully recover from the effects of this regimen, and that by doing this so-called therapy, I have done permanent harm to my system.  My hopes that my body could endure this type of chemotherapy are nothing more than a bitter metallic aftertaste.


Last night I sent my oncologists the following note:

Drs. Aragon-Ching and Apolo:

I'm just emerging from round 2 of ddMVAC, and feel like crap -- ongoing mouth sores, fatigue, GI system distress, lack of sleep.  My quality of life is not so good since I started this therapy.  I am seriously questioning how much longer I can stick with it.  I'm meeting with Dr.
Aragon-Ching tomorrow for labs and to consider my options.  Would it be possible to schedule a CT at NIH after round 3 so we can perhaps find out if my cancer continues to spread (like it did during GemCis)?

FYI, enclosed is a recent NY Times article (link here) on immunotherapy.  Dr. Apolo, you had mentioned immunotherapy as a possible option.  Has there been any further progress using this therapy with mets bladder cancer?

Thank you for your ongoing care,

Ken Brothers

Dr. Apolo responded withing 10 minutes as follows:



We can do a scan after cycle 3. Contact Kattie with the best dates and she can help you arrange this.
We have a PDl-1 study at the NCI and there are 2 at Hopkins. These are good options in the future but for now we have very little data in bladder cancer.

Today Jennifer and I met with Dr. Aragon-Ching, who said that she had traded further emails with Dr. Apolo regarding my treatment.  They both are concerned that this chemo seems to be demanding a particularly high price from me.  They fully agree with my decision to not do round 3 next week, but to give me at least an extra week to recover.  Dr. Aragon-Ching indicated that, if my mouth and throat sores caused by my mucositis do not get better, there is a chance that she might recommend that we pull the plug on this therapy after two rounds.  If I do recover, and I am physically and emotionally ready to do another round, then we'd do it on October 30, followed by two days of hydration.  I'd then have the CT scan the following week to see if my cancer has spread. 

I told Dr. Aragon-Ching that a small part of me hoped that the cancer had spread, because that would mean I would not have to do more of the ddMVAC chemo.  That of course is completely bass-ackwards, and makes no logical sense whatsoever.  But it captures just how deeply I loathe the corrosive weakness this chemo causes. 

Mets Day 550: mouth sores and Mt. Baldy

I've been lethargic and listless for the past several days.  The chemo drugs have impaired the regeneration of lining of my mouth.  It feels like my mouth has been scalded.  Yesterday we got some "magic mouthwash" -- a specially compounded mixture of meds to help remedy the pain.  I swish and spit, and it numbs up the raw spots and gives me temporary relief.

For the past few mornings my pillow has been awash in hair.  Sleep has been hard to come by as it is, and having my sheets and pillowcase coated in hair does not help.  Yesterday morning I took a shower and watched as the drain clogged with a hairball more than an inch thick.  That's it, I decided.  I grabbed the hair clippers and buzzed off all of my hair.  I started with the #1 attachment, then went with the bare clippers.  I then lathered up my skull and tried to shave the rest of the stubble off.  It's not as easy as I thought it would be.  Each of the family members got a shock as they came in and saw my bald head.  Jennifer good-naturedly helped finish the job, shaving those hard-to-reach places.

So now I'm getting used to being bald.  It feels strange when laying my head against a chair, or when my skull is perspiring.  On the one hand, I'm glad I don't have to have my hair shedding over my food or clothing or pillow or shower, but on the other hand, losing my hair is a tangible reminder that my cancer is inescapable. 

Mets Day 547: hydration and hair loss

Yesterday I went back to the cancer center for two liters of saline, an anti-nausea drug, and the Neulasta growth hormone booster shot.  I think that the extra hydration is helping -- I don't feel quite as bad as I did after the first round.  I'm going back this afternoon for another couple of liters.

I don't have much of an appetite. My taste buds think everything is moldy wet cardboard.  I'm mainly drinking protein shakes. 

Meanwhile, my hair is falling out by the handful.  This morning the shower drain looked like a gerbil was lying on it.  When I combed my hair there was a shocking amount hanging from the tines.  I'm currently debating whether to let it fall out on its own schedule, or whether to give it an assist.  If there ever was a time for one of my kids to do something stupid, this is it, so I can literally tear my hair out. 

ddMVAC chemo day 15: chemo and donuts

I met with Dr. Aragon-Ching before today's chemo session started.  I told her I was feeling much better than last week, and I might be as high as 40%.  She verified that I was serious, and carefully checked me over for any signs that the chemo was pushing my body too far.  She said my blood counts were ok -- my platelets were a little low, but everything else was in the normal range.  So now I'm back in the chair with a liter of saline being pushed into my chest through my port.  Today will be the same drill as two weeks ago, with the anti-emetics and four chemo drugs pushed into my body, along with nearly a gallon of fluid.  I'll be back tomorrow and Friday for more hydration.

I came better prepared for today's session -- I stuffed a box of Entemann's donuts in my bag.  Jennifer doesn't know; she has developed a nasty cold and didn't want to inflict her germs on the denizens at the cancer center, so she dropped me off this morning and went back to bed.  I'm testing the theory that eating certain foods during chemo will cause me to avoid them later because I'll associate them with chemo.  A chemo-food association occurred last year with blue PowerAide Zero (I'll drink it now and instantly be reminded of my GemCis chemo).  I also have a chemo association with the large chocolate chip cookies from the nearby deli, but after extensive (and ongoing) research, I'm pretty sure the association is just the cookies from that deli.  I feel an obligation to increase the confidence in that conclusion, as well as my testing for Entemann's.  The sacrifice comes when I have to determine whether I have an aversion to that specific type of donut, or whether it is all types of donuts, or all types of Entemann's.  And because this is for medicinal purposes, I'll ask my tax advisor whether I can include the cost of cookies and donuts in my itemization of medical expenses on my federal taxes. 

Mets Day 544: slight change of chemo plans

Today my doctor told me that she can't grant my request to break the ddMVAC chemo infusion into two days, because the cancer center is fully booked and can't take another all-day infusion on Thursday.  As a result, I'm going to get all 4 drugs tomorrow, with extra hydration.  Then I'm going to go back on Thursday afternoon, when there will be some chairs available, and get more hydration, anti-nausea drugs, and my growth hormone booster shot.  I'm also scheduled to go back on Friday afternoon for even more hydration and anti-emetics if I need them.  I'm sure that, by the end of the week, I'll be thoroughly sick of the place.

My doctor thinks that one of the reasons why I was so wiped out by the first round was that I didn't keep adequately hydrated.  I knew I was supposed to be guzzling fluids, but all I could tolerate was a sip at a time.  I knew I was in a bad place when I was turning down Diet Coke.  Hopefully the extra hydration this week will help me avoid the worst of the blahs. 

Mets Day 543: More chemo (reluctantly)

I just sent my oncologist the following email:

Dr. Aragon-Ching:

I've decided to embrace the horror and submit to another round of chemo this week.  Let's spread it over two days, as we discussed, and hope that the extra hydration will help ameliorate the fatigue.  I'll plan on showing up on both Wed. and Thurs. at 8:30 am unless you advise otherwise.  Please confirm.  Also, please order the Neulasta booster to be sent to my house so Chelsea can inject me on Friday. 

Let's also plan to have an extra week between rounds two and three.  This is both for my sanity, and because we have a lot of family gathering at our house during the last week of October, and I'd like to be feeling better than something stuck to the bottom of my shoe.  That would mean that round 3 would start on Wednesday, October 30. 

Many thanks,

Ken Brothers

'Nuff said.

How to get SSDI for Mets BC

After the August CT scan showed that my bladder cancer had metastasized to a lymph node by my neck, I started looking into whether I qualified for social security disability benefits, or SSDI.  I checked out from the library Nolo's Guide to Social Security Disability, since I knew nothing about SSDI, other than I had been paying into the social security system for decades.  It's a very helpful book, and clearly explains the eligibility and application process.  I recommend it to all SSDI newbies.

I went to the Social Security Administration's website and accessed my current Social Security statement.  It stated that, over my career, I've paid $168,251 in Social Security taxes, and my employers have paid an additional $58,976.  I've also paid $95,539 in Medicare taxes, and my employers have paid $82,432.  It also confirmed that I had worked the required minimum 10 years to qualify as a direct benefits recipient.  I figured that I've contributed my fair share, and I may as well see if I can what I can now, since I'm almost certain to not be collecting regular retiree benefits.  

Reading the book, I learned there is a two-part process to receiving SSDI:  first, one must qualify as disabled; second, one must pass the financial eligibility threshold. One must wait for five months after the initial date of disability to qualify for benefits.  SSA will pay only a year of accrued benefits, so anyone who waits more than 17 months from the initial date of disability is forfeiting benefits that would otherwise be paid.  Pass both tests, and I can join millions of others sucking at the massive federal teat, oops, I mean receiving tax dollars redistributed by our munificient and compassionate federal government. 

The Nolo book warned that the disability qualification is the most difficult and complex.  I learned, however, the Part 13 of the SSDI Medical Listings regulations explicitly state that persons with metastatic bladder cancer are considered to be totally disabled for purposes of the social security disability income, regardless of your actual physical condition.  Here's what it says:

Listing 13.22: Carcinoma of the Urinary Bladder (Adults)
The urinary bladder stores urine received by a means of a ureter from each kidney.  The bladder discharges urine from the body through the urethra. Most urinary bladder cancers are transitional cell carcinomas.  Like other cancers, bladder carcinomas have a much better prognosis if detected early before they have spread beyond the bladder.  Even metastasis to regional lymph nodes results in a poorer chance for survival, so it is an allowance (part D). Failure to achieve complete surgical removal of the cancer for any reason satisfies part C.

Total cystectomy (part B) means complete removal of the bladder. When cystectomy is necessary, the ureters can be sewed into the last part of the small intestine as a drainage site for urine. Any infections or other complications affecting kidney function as a result of such urinary diversion must be evaluated under Listing 6.02 (Part 6), which deals with decreased kidney function.
 
a. Listing Level Severity
For your condition to be severe enough to meet this listing, it must match A, B, C, or D, below.
A With infiltration beyond the bladder wall.
B Recurrent after total cystectomy.
C Inoperable or unresectable.
D With metastases to or beyond the regional lymph nodes.
 
b. Residual Functional Capacity
RFC has little relevance to this listing, since this listing is met when the cancer is advanced
enough to cause any significant symptoms or other complications.

Nolo's summary of the Medical Listings is available for free download here.  This contains SSA's medical listings and disability qualifications for for all health conditions.  Cancer is in Part 13; bladder cancer is section 22 of Part 13. 

For mets BC, the key language is "Even metastasis to regional lymph nodes results in a poorer chance for survival, so it is an allowance (part D)." An allowance means that you meet the threshold definition of disability.  This definition of disability applies regardless of your actual physical limitations; as long as you have confirmed metastatic lymph nodes outside your bladder, you are considered to be totally disabled by the Social Security Administration.  I note that T4 bladder cancer (infiltration beyond the bladder wall) meets part A; a recurrence of the cancer after RC meets part B, and inoperable BC meets part C.  Those didn't apply to me, but I know other BC warriors may have those conditions.

After satisfying myself that I likely met the disability threshold, I read about the income limitations.  I don't pretend to understand those rules; sometimes it implied that SSDI would be paid only if you are earning below a certain amount, and other portions implied that your current income was not as relevant for disability purposes.  Everything that I read told me that I should go ahead an apply and see what SSA said.  Getting the disability finding can be important, because it starts the clock ticking on when a recipient might be eligible for Medicare (maybe 24 months after the initial date of disability), or for other purposes.  I shrugged, thought "why not", and decided to apply. 

I went online to ssa.gov and filled out the forms.  It's also possible to do it by telephone, or an in-person visit, but online is by far the easiest.  The first form was to gather my basic information, and took only about 30 minutes to complete.  The second part required reciting my detailed medical history, including naming every doctor I saw and every procedure I had.  That took about 5 hours to fill out.  I frequently referenced this blog to refresh my recollection of who did what to me when.  I submitted the forms on August 26, and mailed in a foot-thick stack of medical records a week or so later.

During the week of September 9, I had a couple of phone calls with the claims examiner from my local SSA office.  She was most concerned with getting the details regarding my compensation history.  I explained it over the phone, she filled out some forms, then faxed them to me for review, additional information, and signature.  I provided a detailed explanation of my compensation since I was diagnosed in late 2011, signed the forms, and faxed them back to her.  

Less than a week later -- lightning speed, in my opinion -- the SSA mailed me a letter stating that it agreed that I was disabled within the meaning of the SSDI regulations.  The examiner cited the May 2012 pathology report and related CT scans showing that my cancer had metastasized outside of my bladder to my regional lymph nodes.  The letter indicated that I would get a separate letter stating the financial award.  That came a week later, when SSA determined that I was totally disabled in May 2012, when my surgery confirmed that I had metastatic bladder cancer.  The letter further explained that I was eligible to start receiving benefits as of October 2012 (following the mandatory five month waiting period), and I could expect a lump sum payment in the amount of $28,032 for accrued SSDI benefits to be electronically transferred into my bank account.  I checked and found that the transfer had taken place on September 19.  From date of initial application to date of first payment, the entire process took under a month. 

If that wasn't enough -- and apparently it's not -- SSA sent Jennifer a letter and invited her to apply for spousal benefits, and for minor benefits for Garrett.  The letter said that she could call the local office to schedule a phone interview, and they'd do the paperwork for her.  That's remarkable.  She called the office, and was told that the first phone interview date was November 15.  She was planning to do it online, but now that the federal government is shut down, I'm not sure if SSA is accepting new applications.

Takeaways:  The SSA is eager to redistribute our tax dollars, and is remarkably efficient.  If you or a loved one has mets BC, then get all your documentation together, fill out the forms, and you can join me and my family at the federal trough. Maybe later I'll wax philosophic on the morality underlying our country's social security programs, but for now I'm with Pink Floyd: Money it's a crime / Share it fairly but don't take a slice of my pie.

ddMVAC chemo Day 8: A talk with my doc

The past two days have continued to be rough.  I've continued to feel weak, with roiling nausea and constant exhaustion.  I've barely slept the past two nights -- not due to my nocturnal incontinence, I think but rather due to the effects of the chemo.  I have been hopting that I'd start to climb out of my chemo-induced hole, but so far it doesn't seem like I'm making any progress. 

Dr. Aragon-Ching quickly replied to the email that I sent her on Monday night (and copied in my post).  She invited me to come into GW at around noon, get my lab work done, then we'd be able to talk about our options.  Jennifer and I made our way in, and my lab work showed that my blood counts were doing reasonably well.  In fact, my red blood cell count was a bit high, suggesting that I has not sufficiently hydrated.  I had lost eight pounds since last Wednesday morning, right before I started chemo, further suggesting that I needed more fluids.

We met with the doctor for more than a half hour.  She commiserated with me about the difficult time I was going through. I said that, if the next 11 weeks were going to be like this last week, I didn't want to continue the chemo.  She noted that my counts were ok, and what I was feeling was the totality of the chemo-induced side effects.  She said that she hoped that I had hit the nadir of this round, and that I should be feeling better in the coming days.  She acknowledged that it might not be until next Monday or so that I could be feeling close to 100%, and that the prospect of plunging into another round of chemo-induced fatigue could be overwhelming.  I said that, given the limited palliative purposes of this chemo (not curative, but to try slow the spread of my cancer), I didn't want to lose 3 months now by feeling lousy, only for the possibility of gaining a it more time before the cancer spreads.  She agreed that it was a difficult decision, and ultimately one that was mine to make.

She did offer a few options to consider, however.  These are not necessarily mutually exclusive.  1) Stay the course, do the second round of ddMVAC next Wednesday.  2) Do the second round over two days, with the M drug on Wednesday (with lots of fluid), and the VAC drugs on Thursday (with more fluid).  3) Postponing round 2 by a week or so, to let me feel better.  She said there was no hard and fast rules to the individual treatment I was getting, since I was not in a clinical trial with specific rules.  She also said there was little evidence one way or the other of what effect a week delay would have on the efficacy of the therapy.  But she agreed that quality of life in both the short and long term was the most important criteria.  4) Suspending chemo after 3 rounds, do a CT test, and see if there is any disease progression.  If so, then we know chemo failed.  If not, then maybe it worked, or maybe the cancer was going to spread slowly anyway.  She noted that three rounds is a lot easier psychologically than 6 rounds.  5) Stopping chemo now and taking a wait and see approach.  She didn't support that option at this point, but understood if I chose to do that.  

She encouraged me not to make any decisions today, but to wait and see how I was doing early next week.  We agreed to reconnect early next week and decide then.  In the meantime, I'm going to see how I'm doing, consider and pray about what I should do, and make the decision when I need to. 

Dr. Aragon-Ching suggested that I have an IV hydration infusion, along with an anti-emetic, to help settle my roiling gut.  So Jennifer and I toddled over to the Cancer Center where Nurse Meg was happy to fill 'er up.  I cranked up the heat in the chair, got a blanket, and closed my eyes for an hour.  I've been so tired. 

We then went upstairs where I had an echocardiogram of my heart.  Dr. Aragon-Ching wanted a baseline to see if the ddMVAC was having an adverse effect on my cardiac function.  The tech rolled the sonogram sensor all over my chest and took lots of pictures.  This must be what an expectant mother feels during the fetal sonogram.  We found the heartbeat and confirmed it's a boy. 

ddMVAC chemo Day 6: I don't know if I can do this

I'm still wiped out.  I've got no energy to do anything.  I shuffle across the room or up the stairs and I'm breathing hard.  Who knew this chemo regimen would turn me into an 80 year old man?

I just sent the following email to my doctors:

Drs. Aragon-Ching and Apolo:

A quick note to advise you of my status.  I have found the ddMVAC to be exhausting.  I have kept the nausea at bay and avoided major GI issues, but have had almost no energy.  I am breathing hard after going up a couple of flights of stairs.  I am extra sensitive to bright lights or loud noises.  My existing tinnitus seems to have been ratcheted up a couple of notches.  I am finding it hard to concentrate on a task for more than a few minutes.  I've been hoping the effects will decrease with time, and maybe I'm impatient, but if this is what it's going to be like foe 12 weeks, I'm questioning whether the game is worth the candle. 

Dr. Aragon-Ching, I'm scheduled to do lab work at your office on Wednesday at around 3 pm.  I have an echo scheduled for 3:15 pm.  If appropriate, I'd appreciate checking in with you to discuss my labs and the side effects.  I can come in earlier if that helps.

Many thanks for your ongoing care,

Ken

I'm thinking that, unless this gets better, I really don't want to be feeling like this for 12 weeks.  The only reason I'm doing this is a chance that it will delay the spread of my metastatic cancer.  It's not going to cure me, and its unlikely to buy me much additional time.  I don't to spend three months feeling like this.  These three months might otherwise be the time that I'd be feeling the least affected by cancer. 

It's no longer strange to be weighing life in a matter of months.  Before cancer, how easy it was to live oblivious to mortality, to assume that I would have years or decades in front of me to do things, or make changes, or whatever.  Last night I opened a new tube of toothpaste and wondered if it would last longer than I would. 

Cancer brings perspective and humility like little else.  Having my granddaughter near helps immensely.  The joy and wonder and beauty of new life makes measure of what matters most. 

ddMVAC Chemo Day 3: Wiped out

This first round of dose dense MVAC chemo feels harder on my cells than any of my GemCis chemo rounds.  It feels like every cell in my body is swaying, like being seasick on a cellular level.  I am lethargic.  I'm not very hungry or thirsty, and have to force myself to stay hydrated.  I have an ongoing nasty taste in my mouth, a cross between cardboard and metallic. 

Fortunately, I have not been so nauseated that I've actually vomited (yet).  Last night I woke up at  midnight with acid reflux, and what seemed like the beginning of an sickness episode.  I stumbled over to the bathroom clutching my pink plastic barf bucket and moaned on the porcelain throne for a while until the acute phase passed.  The rest of the night was restless. 

I also have managed to avoid the painful constipation that plagued me during the first round of GemCis.  I've been taking Miralax each night, and spacing out my anti-emetics so they don't plug me up.  On the other hand, I have not been eating that much, so there's less passing through my GI tract. 

Yesterday Chelsea gave me the Neulasta growth hormone booster shot that my insurance company had overnighted to me.  That can cause a dull ache in the bones and the bone marrow gets kicked beck into gear.  My tinnitus is loud and clear, and at times I feel like I am on the ragged edge of holding it together.  It's hard to concentrate or read or even watch TV.  About the best I can do is lay back on the recliner and stay very, very still. 

Mets Day 530: ddMVAC Chemo Day 1

The day started at 5:30 am, when I got up to take my son to his 6 am religion class – something that most Mormon high school kids choose to do each school day.  Jennifer and I take turns driving him to the church for his class.  Back when I was working, I’d frequently continue on into the office.  Today I came back home and crawled back into bed with my snoozing wife. 

We left for GW at 7:40, and I was reminded at how little I missed my morning commute.  Jennifer dropped me off at GW’s Cancer Clinic at 8:30 am, then went to run some errands and to attend a parent-teacher conference.  We knew this would be a long day, and I had urged her to not sit by my side and watch the IV drip for 8 or 9 hours. 

I met with Dr. Aragon-Ching first.  She was pleased that Monday’s CT scan was negative, and we could proceed with the chemo.  I asked her about why she had decided to do all the infusions in one day.  She said that she had been consulting with Dr. Apolo, who thought that I would be fine with receiving all four drugs in one day, especially since I had strong kidney functions.  After reviewing my lab reports and history, Dr. Aragon-Ching decided that the original plan – three bags of hydration and the Methotrexate today, and then come back for three more bags of fluid and the Velban, Adriamycin, and Cisplatin tomorrow – was more hassle than it was worth, and that I'd be fine with getting everything in a single day.  I'll get the Neulasta booster shot tomorrow.  I’ll  come back next week for a blood draw and to check my counts.  She also said that it was important that I continue to keep hydrated, even if I lost my appetite, because dehydration was the greatest risk of this chemo cycle.  We talked about the other likely side effects – nausea, constipation, peripheral neuropathy, hair loss, and how to deal with them.  She also noted that the doxorubicin (the generic name for the “A” drug, Adriamycin), would turn my urine red, as if it were bloody, and said that was normal while it passed through my system.  It might also might turn my fingernails darker, so it will be easier for me to go goth.  She said she’d give me lots of anti-emetics before I got the MVAC drugs, and also write scripts for them in pill form that I should take as needed.  She said that taking ginger probably wasn’t necessary with all the other anti-emetics I would have, but there wasn’t any harm in it. 

Onto the chemo infusion room, the same place that I had last year’s GemCis regimen.  The same staff was there, including Meg, a great nurse who remembered me from last year.  She accessed my port and started me on a bag of saline.  She said I’d probably get between 2.5 and 3 bags of fluid today.  My infusion rate is 500 ml per hour, so that means I’ll be connected to the IV for about 6 hours. 

Meg gave me printouts on all of the drugs that I’ll be getting, and the financial counselor gave me the cost sheet for everything.  Here’s what’s on the menu for today:

Three anti-emetics, to help control for nausea and keep my GI system going:  10 mg of dexamethasone ($1.10), 250 mcg of palonosetron ($207), and 150 mg of Emend (fosaprepitant) ($309).

The MVAC regimen: 100 mg of Methotrexate ($6.50), 6 mg of Velban (vinblastine sulfate) ($8.50), 60 mg of Adriamycin (doxorubicin) ($55.00), and 120 mg of Cisplatin ($112.00).

Each Neulasta growth hormone shot (6 mg of pegfilgrastim) costs $3083.83.  That’s not a typo.  After my infusion started, I spoke with OptumRx, the drug provider for my insurance, which confirmed that it could overnight the Neulasta drug to my home, where I could inject myself, or have Jennifer or Chelsea do it. I confirmed that Dr. Aragon-Ching was ok with my not coming in tomorrow and having the Neulasta shot at home, and confirmed the shipment with OptiumRx.  My copay was $60.   

According to the GW cost sheet, there are additional costs for the doctors, nurses, lab tests, the facility, etc., that runs around $850 per round.  Including the Neulasta, the total cost for each round of treatment is $4572.02, and the total cost for all six rounds is $27,432.12.  If I back out the Neulasta, the cost per each chemo round is $1488.18, and total cost for all six rounds is $8929.09.  My insurance covers 90% until I have paid $1500 in out-of pocket costs for the year, which I think I’ve already met, or am close to meeting.  Thereafter, it covers 100%. 

Unlike my first round of GemCis last year, there are no fire alarms, just the growling of the infusion pump and chatter of patients and nurses.  Two chairs away from my, another patient is loudly talking about the exploits of his father during World War II.  Fortunately for me, he’s facing the other way and directing his monologue to the poor guy his other side, who is tethered to an IV and can’t get away.  I studiously avoid eye contact with Mr. Family History, who occasionally glanced my way in hopeful search of a larger audience.  I put in my earbuds, closed my eyes, and cranked up Adele who could have been talking about my chemotherapy: There's a fire starting in my heart, reaching a fevered pitch and it's bringing me out the dark. 

By 3 pm, my butt was getting tired of sitting in one place for so long.  I switched over to Pink Floyd's Dark Side of the Moon, and Time started just as I am typing this:  Ticking away, the moments that make up a dull day . . . you're older, shorter of breath, and one day closer to death.  Not all prophets are religious. 

My friend Cynthia joined me at about 4 pm, and we sat together while the last drops of Cisplatin and saline entered my body.  By 5 pm I was done.  I'd had over three liters of fluid pushed through my port, and had drunk two more liters of PowerAide.  I made appointments for lab tests next Wednesday, and for my second round on October 9.  I picked up my new anti-emetics pills and headed home.  By the time I arrived, I was beginning to feel nauseated, so I began taking my pills and sitting very still.  It feels like I've got cellular seasickness:  every cell was slowly twisting and writhing.  I found that holding my granddaughter on my chest helped soothe the swaying feeling.

Mets Day 529: Prepping for salvage chemotherapy

Tomorrow morning I start dose dense MVAC (or ddMVAC) chemotherapy.  The goal of this chemo round is not to cure me of my cancer.  The doctors have made clear that they lack the ability or knowledge to "cure" (meaning to place into remission for more than five years) metastatic bladder cancer.  There has never been a proven curative therapy for my type of cancer that can be replicated with any reliability.  It is important to understand the limitations of a treatment before embarking on it.  I get it.

Instead, the goal of this course of chemo is palliative, meaning to treat and hopefully lessen symptoms, but without a curative intent.  This type of chemo also is referred to as "salvage chemotherapy." The symptoms that this chemo is attempting to address is the spread of my cancer to distant locations -- mainly the hundreds of lymph nodes in my torso, but also to slow the growth of tumors in other organs, especially my liver, lungs, bone marrow, and brain.

As I've recounted in my prior blog entries, doing this ddMVAC regimen at this point is an aggressive treatment, for three reasons.  First, we're proceeding quickly.  We are not waiting until I have lymph nodes that are over 1.5 cm in size, which is the traditional threshold for measurable metastatic disease.  Doctors usually like to wait until they see nodes or tumors of that size, so they can later measure them to see if the treatment worked.  But it made no sense to me to wait for the disease to progress before we start trying to slow its growth.  It's like waiting for weeds to completely take over a lawn before you apply a herbicide.  Better to attack the weeds before the roots get too deep.

Second, the evidence that ddMVAC actually works is not as strong as many doctors would like.  There is some evidence that it can slow the progression of the disease in up to 50% of patients, but the literature also indicates that when the effect (if any) wears off, the cancer progresses faster.  Returning to my gardening metaphor, the ddMVAC herbicide may slow the growth of the cancerous weeds, but when the herbicide wears off, the weeds grow faster than before.  But if it slows the growth of the weeds for some period of time, then the chemo will have worked.   

Third, ddMVAC carries with it the risk of some severe side effects.  It is likely to damage my GI tract, eventually causing blisters to the mucosa layer on the inside of my lips, mouth, and throat.  I'll probably have either constipation or diarrhea, or both, as well as nausea and vomiting.  I'll have fatigue and malaise. I'll be at risk for infections and fever.  I'll probably lose my hair.  During this regimen I'll be walking on the ragged edge of toxicity, taking just under the dosage that would so weaken my body that an infection would be fatal.  I can't keep taking the ddMVAC for more than six doses at a time, and 12 doses total, because over time the chemo drugs are so toxic that it would kill me.  The hope is that the chemo will have enough of a prophylactic effect that it will delay the further growth of the cancer, but not so much as to cause a systemic collapse.  My doctors have told me that they think that I will "tolerate the chemo well" and they they can manage these side effects, but I'll be the one barfing and writhing on the floor in cold sweats.

I'm going into this with my eyes wide open, choosing to subject myself to the side effects because this treatment offers the best possibility for extending my life.  I have made clear to my doctors and family that I don't want to torture myself to buy a few extra weeks of life.  In weighing the potential benefits against the risks, however, I have concluded that ddMVAC does not rise to the level of torture.  Maybe in a few weeks I'll change my mind, but for now, we're moving forward.

I've done a few things to prepare for my chemo.  On Sunday, I started taking 500 mg. of ginger twice a day to help reduce nausea.  My sister brought to my attention an NIH-sponsored study published last year (link here), which concluded that ginger reduces acute chemotherapy-induced nausea when taken for six days in conjunction with each chemo cycle, starting three days before and going until three days after.  There's no downside to taking the ginger pills, and I'll also be taking the anti-emetics.  I'll also be taking Miralax daily.  I've been to this rodeo before, and have a slightly better idea on how to keep my GI system in balance. 

I had a baseline CT scan at NIH yesterday.  As I lay on the table and felt the iodine warm my body and collect in my neobladder, I realized that this was my ninth CT scan in 20 months.  It's old hat now.  One of purposes of yesterday's CT was to see if it could detect a tumor in my liver.  If so, we'll probably pull the plug on the chemo, as ddMVAC does not work well with liver tumors.  Assuming the scan does not show a liver tumor, we'll proceed.  [After I initially posted this blog entry, Dr. Apolo emailed me the CT report, which did not detect any liver metastases or other enlarged nodes.]  I'll have another CT scan in December or whenever I end this regimen, to see if my cancer has spread.  If not, and depending on how I tolerate the chemo, I may have another six rounds of ddMVAC early next year.  If it the disease has progressed, then we'll know that the chemo didn't work. 

Dr. Aragon-Ching's nurse just called to tell me that she wanted to do all four drug infusions tomorrow.  This is different from what she had told me earlier(the M drug on day one, and the VAC drugs on day 2), with no explanation as to why.  I'll find that out tomorrow morning.  Tomorrow will be a long day, lasting nine hours or more for the infusions, plus the blood work and port placement.  I'll probably take in the laptop and blog, or maybe I'll start watching a new miniseries.  People have recommended Breaking Bad (teacher with cancer does bad things) or Mad Men (ad executives do bad things) or House of Cards (politicians do bad things).  On second thought, maybe I don't want to watch people doing bad things.  Yesterday I held my new granddaughter for about three hours.  There are very few things better than that. 

Mets Day 525: I've decided to have ddMVAC chemo

For the past ten days I've collected a lot of information about the treatment options for my spreading cancer.  I've spoken with three different oncologists about whether I should have salvage chemotherapy, and they have in turn consulted with four other doctors.  Yesterday Dr. Apolo said that she had consulted with two additional doctors, who agreed that ddMVAC was appropriate, so the final tally is 5 doctors support dose dense MVAC, and two advise against it.  In addition, I have extensively discussed whether to proceed with Jennifer and Chelsea.  I have prayed for guidance in, or at least comfort with, my decision.  Yesterday afternoon I decided to go forward with ddMVAC.

The things that swung my decision to go forward with treatment were as follows:  First, I trust the judgment of Drs. Apolo and Aragon-Ching.  Although I also trust the judgment of Drs. Plimack and Steinberg, who were advising against treatment, I was ultimately persuaded by review of the literature, and as a result of my phone conference with Dr. Apolo yesterday. 

Second, the fact that Dr. Apolo said that she had examined the cancer cells take from me during the biopsy a couple of weeks ago, and concluded that my metastatic cancer was undifferentiated and more aggressive, caused me discount the hope expressed by Dr. Plimack that my cancer might move slowly through my body.  It appears to be the type of cancer that, if unchecked, will move quickly through my body.  Doing nothing likely would ensure that I would form secondary tumors in a few months.

Third, Drs. Apolo and Aragon-Ching strongly believe that they can manage ddMVAC without the toxicities that were common 10 years ago, when 70% of patients ended up being hospitalized during chemo.  Dr. Apolo said how she had been treating a number of patients who continued to work, or garden, or otherwise keep ambulatory. This helped persuade me that the three months of chemo probably would not be lost months, but that I would be able to keep a relatively normal schedule. Whiel I don't expect the ddMVAC to be a cakewalk, I'm persuaded that I should be able to avoid hospitalization as a result of the chemo. 

Fourth, the upside of ddMVAC outweighs the downsides.  The average time for progression to full-blown tumors with no treatment is 4-5 months.  With ddMVAC, it's over 9 months, and 35% hit the two-year mark.  While there will be no way to prove whether ddMVAC bought more time, should that occur, it likely won't cause long-term damage, especially since I'm relatively young and otherwise healthy.

I've let Drs. Aragon-Ching and Apolo know of my decision.  Dr. Aragon-Ching has obtained the approval of my insurance company to proceed.  I'll have a baseline CT scan through NIH on Monday afternoon, since the insurance company balked at approving that.  I am scheduled to have my first dose (the "M") starting on Wednesday, September 25.  On Thursday, Sept. 26, I'll have the "VAC" doses.  On Friday, Sept. 27, I'll have the Neulasta growth hormone booster shot.  Then I'll repeat the cycle for six times, or until I have too many side effects (most likely mouth sores that prevent me from swallowing).  After I end the cycle, I'll have another CT scan to see what changes there are from my baseline CT scan.

For now, I feel as I am headed back into the toxic mire, poisoning myself to save myself.  To (mis)quote young Henry:

Once more unto the breach, dear friends, once more;
Or close the cells up, make our cancer dead!
In peace, there ’s nothing so becomes a man,
As modest stillness and humility:
But when the blast of chemo blows in our ears,
Then imitate the action of the tiger;
Stiffen the sinews, summon up the blood
Disguise fair nature with hard-favour'd rage;
Then lend the eye a terrible aspect;
Let pry through the portage of the head
Like a brass cannon; let the brow o'erwhelm it
As fearfully as doth a galled rock
O'erhang and jutty his confounded base
Swill'd with the wild and wasteful ocean
Now set the teeth and stretch the nostril wide
Hold hard the breath and bend up every spirit
To his full height.