Check-in

 12/16/22

Hello, this is Brian's wife checking in for him. It is hard to believe it has been 15(?) years since he started this blog to share information about his bout with colon cancer.  Since then,  I have followed two non- profits...  the Colon Cancer Alliance  which, among other things, helps patients and their families to connect with others for support and shared information. The other is Compassion & Choices, which advocates for terminally I'll people to control the manner and time of death. Having watched Brian's struggle, and my mother's (also with cancer), it is something in which I firmly believe. I will note that Brian would never have used the option to end his life; but it would be nice to know the option was there

. 

I do not want this blog to go dormant. Until I archive it, I will continue to add periodic updates.   Please read Brian's entries! They are informative, and personal (relatively), and a real tribute to an incredible man. 

Be well!

Robbie

Brian passed away a little over a year ago.   This blog is one of the remarkable legacies he left his family and friends.   It is a great source of strength and inspiration to people who are going through a similar struggle or who know someone who is -- in other words, all of us!
To keep the blog from going dormant, I am posting one of the eulogies read at his funeral.   I'll post the others at other times.
As his wife, I will say this past year has been hard because I missed him; but I did not properly remember him.  I recently revisited the blog and it reminds me of what I can do to move forward and honor my husband's memory.   I'm sure that's what he intended!
Be well, Robbie

From Frank:

May 14, 2013.  Thank you, Brian.

Looking at all the pictures around the room, I realize that I’m a latecomer to the miracle that was (is) Brian.

I met Brian at our kids’ charter school.  He was the outgoing finance wonk on the Board and I was the newcomer.  That was 2002, I believe.  We met for him to give me some background on the school’s finances and to go over what he thought the challenges were.  He told me there was only one major challenge – he said “we need to expand or we’ll die.” 

Over the next few years, Brian was a leader on the Expansion Committee.  Moreover, he was our chosen presenter at school-wide status updates.  I remember being awestruck at how wonderfully reasonable and cogent his presentations were.  He could always see things more clearly than everybody else, and he was a master of communicating that clarity.

I missed Brian when he and the family moved to Richmond, though we did visit on the way back from our trip to North Carolina and Tennessee.  I recall that we took a tour of Petersburg battlefield site with his family.

It was when Brian came back, though, that we really became close.  I had a consulting gig in Manhattan, and he and I would meet for Scotch and dinner some evenings when he was staying at the corporate apartment.  He even lent our family the apartment for the 2008 4^th of July weekend.  It was great living in Manhattan for the 4^th!  But this was also around the time that he gave me the bad news about his colon cancer.  He was clearly concerned but still upbeat and optimistic.  His objective was to live life to the fullest and just get as far as he could.

That winter, in early 2009, we embarked upon what has become known as the Puerto Rico Frat Boys Vacation.  Quite frankly, I was surprised and flattered to even be invited – again, being the latecomer to Brian’s inner circle, even though I knew the rest of the crew from the charter school.  Those few days were magic.  Despite the obligatory afternoon nap, we had a wonderful time lounging on the beach and exploring the island by night – the casino (Brian won $120), out-of-the way restaurants, and even a bar or two (surprised?).

In June 2010, Brian, the great presenter, enlisted me to explain the story of the housing bubble and the 2008 economic collapse to a rally of the Coffee Party.  I did just that (as it turns out, in painful detail) to a packed crowd of over 5 concerned citizens.  I’m sure they knew it was going to be me talking, not Brian.

In January of 2011, I was able to have Brian to myself for a 4-day weekend in Miami.  We toured the architecture (and the bars and restaurants, of course) of South Beach as well as a really neat park on Key Biscayne.  (Brian took many photos of the foliage and of lighthouses.)  But the most intimate highlight of the trip was his sharing the first 2/3 of his novel with me.  So while he took his afternoon nap, I sat in the living room rapt in the pages of his imagination.  One of the greatest compliments I’ve ever received was to be asked to be one of Brian’s literary critics.

Over the last couple of years, we’ve found ways to get together despite being some distance apart.  He’s visited me at my house, and I’ve visited him at his.  We went to Monmouth Park racetrack together, then ate steamers at a little restaurant on the water near where he grew up.  We also met at a lobster roll place in NYC’s East Village.  We started the practice of meeting for lunch at different restaurants in New Brunswick and did that a few times.  I know it’s selfish, but it was always great to have him to myself to talk about his treatments, about politics, about work, about our families, and about life.  He never sugar-coated anything, but he wasn’t needlessly cynical or pessimistic.  There was (is) a beauty of spirit about Brian, and that relentless clarity of thought and expression.  I learned so much from him, and it has softened me over the years.

A few weeks ago, Brian and I had lunch together for the last time at a local sushi place.  It was the most intimate conversation we’d ever had.  I had to ask him.  I asked if he was or thought he would ever be at a point of closure about life.  What he said surprised me, but it shouldn’t have.  He said “No.”  He said that there could never be closure.  He said that there was more to do every day, there was more to learn every day, there was more to enjoy, and to love.  I thought he was talking about himself, but I realize now that it was his message to all of us.

Yes, I came late to the miracle that is Brian.  But I’m grateful to have been part of his life at all.  Thank you, Robbie, for sharing him with me.  Thank you, Brian, for being who you are.

Hospice Update

Hello to all our friends and family.   It’s been quite awhile since Brian wrote his “Palliative Care” entry.  There have been several times since then that he’s started to update you on Hospice care, but fatigue keeps getting in the way.   So, I’m stepping in to let you know that, while he is steadily declining, he is also hanging tough.   He sleeps a lot, and is on lots of meds.   There are many uncomfortable changes that go with liver failure, and the cancer spread to his bones does cause pain.  But he still gets himself up and around, and we have several comfortable ‘sleeping stations’ throughout the house.   We've had a steady stream of visitors, which breaks up the days.  So far, the Hospice folks have been quite supportive and responsive to Brian’s needs.  They have paid for two individual radiation doses which greatly eased the bone pain.  He is scheduled to have a third shortly.

Thanks to you all for your blog comments, texts, emails, phone calls, letters, food, gifts  and visits!  It’s really helping us through a tough time.   I must give a special shout out to the families who helped fix our hurricane-damaged fence –it was a fun day, and just in time to prevent the deer from eating the Spring growth.  Thank you!

I must also say that life is moving along as usual.  Our kids are both successfully forging their way through the school year.  David recently went to his junior prom and had a terrific time.  Vicki just celebrated her 20^th birthday!   Next week, I will help host a senior citizen prom using the junior prom’s theme and decorations.  It just shows you’re never too old to be crowned a prom royal. 

Feel free to contact us any time.   If we can’t answer right away we won’t; so please don’t worry about imposing but don’t be upset by a lack of response.

 
Sincerely,
Robbie

 

* ADDENDUM:  I wrote the above entry several days ago.  Since then, it’s been a very challenging time.  Bri was up with hiccups for a couple of nights.  In that time he became exhausted, tremendously uncomfortable, and had very little to eat or drink.  Fortunately, the muscle relaxer Hospice provided seems to have made the difference and he is comfortable now, but it sure took a toll. The next few days will determine whether he rallies or not.  He is scheduled to have radiation at the base of his skull, a sensitive area that influences many important body functions – swallowing, the phrenic nerve (which if irritated can cause hiccups), clear vision, and much more I don’t know about.   If he isn’t strong enough we won’t do the radiation, which involves several visits to the hospital and has its own side effects.   The biggest problem with the bone cancer though, has been pain.  The radiation will help alleviate that better than the pain meds can, and may relieve other problems such as the hiccups and difficulty swallowing.  But the radiation won’t help the fatigue and other symptoms that go along with liver failure.  Either way, the path ahead is more tenuous than it seemed a week ago.  

I am glad I was able to write the first blog entry before the last few days.  It shows that even at this point things can be positive.    I will post another update soon.   Maybe Bri or the kids will help me craft an ode to Hospice, or we’ll share the nicknames to his many new drugs.

Please still feel free to stay in touch.  It's often a welcome distraction. 

RB

Paliative Care

I’m back with an update – but I must tell you that there isn’t a whole lot of good news in this post.  I had my radiation procedure on January 11^th, which went without incident.  However, the exhaustion I expected afterwards never lifted.  January and February seemed to just slip by as I logged about 16 hours a day sleeping, or at least attempting to. 

 Last week, I had a follow up PET scan to determine the effectiveness of the radiation and it was a bust.  My CEA is at an all-time high, my bilirubin level is well into jaundice range at 3.5 and the cancer has continued to spread.  I knew going in that the radiation procedure only works in two out of three cases; unfortunately I am in the other third.  But, it was worth a shot.

Robbie and I met with Dr. S on Tuesday to go over the results and see if there is anything else to be done.  There isn’t.  The “Plan B” drug – Stirvaga – that we talked about in December cannot be given to patients with my bilirubin level.  In addition, Dr. S has been trying it with others and evidently, it is quite a bit harsher than originally predicted.  In any event, the cupboard is bare and there are no treatments left to arrest my cancer.  From this point on, we will just work on issues of comfort and pain relief. 

The first item for pain relief will be some radiation. I have had a lot of pain in my hip this past month or two, which I thought was tendonitis from spending so much time in bed.  But, it turns out that the cancer had spread to my bones.  Some local, external radiation should help alleviate the pain and attacking the cancer there can also lower the risk that I break my hip, which I am now more likely to do.  Robbie and I will also meet with MSK’s hospice people to put together a management plan to help as this gets worse.

As for timing, Dr. S (as always) will not make a prediction since he cannot make one accurately.  But he did agree that I have “weeks or months” left.  He does not expect me to decline immediately – in fact we made a follow up appointment in six weeks which he said he expects I should be able to keep.  However, at some point soon, my liver will fail or some other bad event will occur – like an infection – and I won’t last long after that. Until then, I plan to do my best to stay as active as possible and enjoy life as much as possible.

I would like to say thank you to all of you who have been so supportive over these past 4 and ½ years.  It is a tremendous benefit to me and to my family to be able to stay connected and live as normally as possible.  Your kindness, humor and companionship have made a big difference and I can’t thank you enough.

New Year Update

Happy New Year to all y’all…I hope you had a great holiday season and are getting off to a good start for 2013! I thought I’d post an update before I go back in for Part II of my radiation procedure.

The first procedure went reasonably well. It was a long day at the hospital but no major complications. The first few days after were a bit rocky –including two trips to the ER – but in the end, everything settled down and I have been feeling better every day since. Tuesday, I went for a PET scan and some blood work to make sure I’m in good shape for the procedure tomorrow and to set a baseline for my post-procedure monitoring. When radiation is used in my case, the tumors won’t shrink but rather they will die, or partially die, in place. Therefore, a PET scan is done before and after the procedure to look at the amount of cancer “activity” in the tumors and hence, determine if the procedure worked.

My blood work checked out okay, so I will go back to the hospital tomorrow to have the radioactive microspheres injected into my liver. I am told that this process will be shorter than the last one, which involved mapping the arteries and sealing off the branches that go to places outside the liver. I should come home tomorrow night and then I’ll need to lay low for a week or two. The doctor says that the most common side effect from the radiation is fatigue. He is going to try to do both lobes of my liver in one session which, if he does, will eliminate the need to have a third round. That’s good news to me since I didn’t really enjoy the first one all that much. The downside is that the reason he wants to do both sides at once is that I have a lot of cancer in there and he’s concerned about getting to it quickly enough that I don’t jaundice (and thus would no longer qualify). In any event, I am hopeful that things will go as smoothly as possible and we’ll see some results by the end of the month. I just need to suck it up for one more rough patch.

In the meantime, it has been an enjoyable holiday here. Vicki is home and it sure is fun to have her around. David just celebrated his 17th birthday and passed his driver’s test – so he is now happy to bop on out to the car and go see his bros! Here’s a picture of him just after he passed the test!

Wishing you the best of the New Year! BB



Happy Nuclear Holidays

Okay, I haven’t blogged in three months, so I guess I should provide a brief explanation as to why. The fact is that I was a bit too melancholy about the results of my August scan to find the right words. My late August scan was the first scan after starting Irinotecan, which I eased onto after getting my stent. Normally, a first scan will show that a drug is “effective” if the tumors shrink by 50% or more. That scan showed shrinkage of only about 10%, indicating that the drug wasn’t going to be very powerful for me.

Normally after getting a bad - or in this case not-so-good - medical report, it takes me a couple of days to regroup and focus on the positive path forward. But in August’s case, I just couldn’t seem to do it. I guess my reserve of emotional resilience had run a bit low. I just couldn’t shake off the feeling that the report was a harbinger of bad things to come. So, I kind of laid low all Fall – not being particularly social on a number of fronts. In the meantime, a few events passed without comment – the 4 year anniversary of my cancer diagnosis in early October, the Super Storm Sandy in late October and, most notably, my lovely wife’s 50th birthday! I know, how could I pass up the chance to write about my “old lady”??

But it was a nice Fall nonetheless, with Rob and the kids doing well.

Unfortunately, my premonition that things would get worse medically has been confirmed. I had a scan two weeks ago that shows significant tumor growth in my liver and new metastases to my lungs. The Irinotecan worked only as a brief stop-gap much as the Vectibix did earlier this year. As a result, I have now used up all of the available chemotherapies and am in the end-game.

But providence still gives me a couple of options. There is a newly approved drug for end-game patients with low side effects and some modest ability to prolong life. In addition, there is a radiation therapy which can be both harsher and riskier, but might also provide a more meaningful extension of life. After discussions with my oncologist and the Interventional Radiologist (the surgeon who would do the radiation procedure), we have decided to give the radiation a try.

Since time is not on my side, I will start the process this Friday with an angiogram to map my hepatic artery, close off the portions that go to other organs (outside the liver) and test that the only blood flow left goes towards my reachable tumors. If it can be sealed off as needed, I will return for another angiogram in early January to have radioactive “microspheres” injected, which should lodge themselves in the tumors. I will have that procedure again a couple of weeks later because the protocol is to treat one lobe of the liver at a time (livers have 2 lobes and I have cancer in both).

An angiogram, by the way, is a procedure where a catheter is inserted into an artery in the groin and then threaded up to the doctor’s “worksite”. Normally, I avoid any activity whose explanation starts with the sentence “We’ll insert a large needle into your ______”, if the blank is filled with a word like eyeball or groin. But in this case, I’m making an exception.

Since these procedures will play out over the next 6 to 8 weeks, and issues may or may not arise in innumerable ways, I can’t say how easy or hard it will be. I’ll just hope for the best and take it as it comes. But most importantly, I hope the radiation will work!

In the meantime, I wish you all a happy holiday season.  

The End of Summer

This weekend is the quasi-official end of summer and I'm sad to see it go - even though September has always been one of my favorite months.  Despite the troubles of May and June, July and August went swimmingly.  I managed through the treatments with success and, at each "third week" break from chemo, I got out of town - three times to the Cape and once to Maine.  The Maine trip, in particular, was fun as Vicki was able to join us!  She was home all summer but worked two jobs - so we didn't see her much. And now she's back at school so it's just the three of us again. 

 

I'm thankful for a peaceful summer, full of beaches and good reading.  I hope you also found some ease from your usual routine - a chance to re-charge your batteries.  I end, therefore, with the picture above - a photo I took at sunset on a quiet cove in Maine near "The Contented Sole", a restaurant with the most delectable mussels!  And just for fun, another shot below, from Back Cove, south of Damariscotta, Maine.  A typical scene on a beautiful summer day!