Mets Day 18 - Supporting the family

I have written relatively little about the effect of my cancer on my wife and children.  As surgery approaches, I can sense the stress level increasing, especially in Jennifer and Kirsten.  Jennifer tries to deal with it by her own spiritual means, including prayer and mediation, as well as talking through her feelings with others.  Kirsten is processing everything internally, not wanting to talk with most people about how she is feeling.  Spencer appears to be coping by confronting his uncertainties and resolving to be a better person and reconnecting with his family.  Garrett continues with his boundless optimism, as well as an essential understanding that he can't control what is happening, so he chooses to not dwell on it.  Chelsea and Josh have each other, and talk through their concerns and provide support to each other. 

It is not for me to pass judgment on how each family member is dealing with the consequences of my cancer.  Each person deals with with stress in his or her own way.  But I am noticing tension between Jennifer and Kirsten and they are the most dissimilar in their approaches.  Attempts by Jennifer to draw out Kirsten usually end in a monologue by Jennifer, and monosyllabic responses from Kirsten. 

We've chosen to not fly any extended family out here while Jennifer and I are in Chicago.  All of the kids wanted to handle things on their own.  So, the kids will manage the house and take care of all of their obligations.  Our church is taking an active role in supporting our family while we'll be gone.  People will bring by meals for the kids and make sure the house hasn't burned down (although I don't want to know if it has).  Our good friend Nicole is coordinating the efforts.  We're grateful for the support of our fellow church members.

One of the great things about writing this blog is that it lets me communicate with my extended family, friends, and colleagues about what's going on with me, and relieves me of the burden of having to repeat the same depressing facts 20 times a day.  Yep, still have cancer.  Nope, not cured yet.  Yep, chemo sucks. Yep, I've still got most of my hair.  Yep, I'm having surgery.  Maybe it will work, maybe it won't.  Yeah, it sucks.  I'm baring my soul in my blog, and everyone knows how I'm doing, and I don't have to talk about it. 

My immediate family, on the other hand, has not been blogging (with the occasional exception of Chelsea; see her blog here).  Most people don't know how the the family members are doing, or feeling, except what they can glean through my commentaries.  I've realized that many people don't know what to say to my family members.  Asking "how are you doing?" to the kids rarely draws an honest response of "my dad's got cancer, the odds suck, he's going away for weeks, I'm afraid he'll die, and I don't know what I'm feeling."   Saying "let me know what I can do to help" is well-intentioned, safe, and usually useless, because it's virtually impossible to come up with a socially appropriate response.  For Jennifer, if you are reading the blog, then ask Jennifer how things are going is tough for her, because dozens of other people are doing the same thing.  I know that I don't want to talk about the same damn thing over and over again, and while Jennifer has a greater capacity for conversation then me, I think that she also gets weary of repeating what's in the blog. 

So, how can you support my family while I'm recuperating?  I have no idea.  I have no doubt that they are going to need that support, because I'll be focused on other things, such as trying to move without tearing my gut open, or learning how to pee again, or other mundane things.  But here are some ideas:

• Send a card or letter or text to an individual family member to let them know you are thinking about them.
• Take one of the kids out to Chipotle or for ice cream or the like.  Don't grill them; just relax and let the conversation flow.
• Take Garrett and Nephi to the dog park, or to come and play on a weekend.
• Bring or send some flowers to Kirsten or Jennifer.

I'm sure there are lots of other things that more creative or socially adept people than me can think of.  Don't be upset if they resist or blow you off or are hard to schedule.

I am grateful for the support of family, friends, and my church and work communities.  I have been heartened and strengthened by many, many emails from so many.  Old friends that I have not spoken with n decades have called or emailed to say that they heard the news and wanted to wish me well.  I am most grateful for those people of faith who have included me in their prayers.  I believe that God hears the call who call who seek him, and am humbled that so many have bent their knees on my behalf.  Thank you. 

Mets day 17 - Today's BCAN patient forum

Today Jennifer and I attended a patient forum sponsored by BCAN.  Seven different doctors talked about all aspects of bladder cancer.  Most relevant to me was the discussions about chemotherapy options, and new research approaches, by two oncologists, Dr. Apolo from NIH and Dr. Dawson from Bethesda Naval Center.  We spoke with both about my case.  They said that they agreed with the decision to proceed with the RC, but also said that there was a significant chance (in the 70% range) that my cancer would later present in distant locations.  They also agreed that there was no established second line chemo regimen since GemCis had failed.  Neither recommended immediate adjuvant chemo, but instead wait and see if and when distant mets would surface, but Dr. Apolo acknowledged that an aggressive therapy might mean immediate chemo.  Dr. Apolo suggested that the most likely candidate for second line chemo would include a taxene.  When they heard that my cancer was micropapillary and nested, they said that they were not surprised that chemo filed, but they both said that they would have recommended it. 

Other interesting facts from the forum:  Bladder cancer receives the least amount of funding (based upon number of cases per year) for the 20 most common cancers, even though it is the sixth most common cancer (and 4th for men).  Bladder cancer is the most expensive cancer to treat.  Bladder cancer has had no new FDA-approved drugs for more than 20 years.  Bladder cancer, once it metastasizes to other organs, is among the most lethal and fastest-acting of all cancers.  There is no cure for metastatic bladder cancer. 

Also, Jennifer observed that we were probably the youngest patients there (by 20 years or more).  Life isn't fair, eh?

Jennifer reminds me that the BCAN fundraising walk is a week from today.  See my fundraising page here (or paste this link: www.stayclassy.org/fundraise?fcid=193020).  For those in the DC area, you are invited to walk on the Mall at 9:30 am on Saturday, May 5.  Sorry I won't be there, but I'll want pictures. 
In Chicago planning news, we're nailed down the lodging.  A friend of ours who is a theologian and seminarian put us in touch with a Augustinian order that has a guest house in Hyde Park, which has offered as many rooms and beds as we need.  Jennifer, Chelsea, and I will stay there on May 1, then I'll be they'll stay there while I'm in the hospital (Chelsea will likely return to DC over the weekend).  Anticipating that I'll be discharged around May 9, we'll move to the Westin for the next 10 days or so.  Hopefully, I'll be cleared to return to DC around May 20.  Jennifer is looking forward to quiet time in a chapter house that is walking distance from the hospital.  I'm grateful for all of the offers for assistance and unexpected graces that provide comfort during these turbulent days. 

Mets day 16 - so many logistics, so little time

Logistics for the surgery are coming together.  The insurance company has authorized the surgery, and the hospital has all of the information from Hopkins, GW, and my primary care physician.  I go under the knife at 9:45 am on May 2.  Jennifer and Chelsea will be there; one of them will update this blog until I am ready to take back the keyboard. 

I'm excited to be moving forward with this.  It's good to have a goal, and to identify the interim steps leading up the the objective.  Break it down, plan it out, move forward. 

Finding lodging for Jenifer and Chelsea is another matter.  As my travel office advised me: "With regret, it would appear that several conventions are creating what amounts to be a sell out, citywide.  I do not see anything close to  the location you mention, as being available for an extended period."  Among others, NATO is having its 2012 Convention in Chicago in May.  Don't they know that something more important is going on, namely, my surgery?  How rude of them!

The American Cancer Society has special arrangements with several hotels, but most were sold out.  The ACS managed to arrange a room at the Westin on Michigan Ave for $50/night (usually around $400), but the place is sold out through May 9.  We have a reservation starting on May 9.  Finding a place for Jennifer for the fist 9 days has been tough - there is very little in Hyde Park.  I finally found an Extended Stay America near Midway that had space available the first week of May.  Then a friend told Jennifer about a group of monks of the Augustine Order that had rooms available near U. Chicago.  That idea appealed to Jennifer.  I'll be in the hospital, I said, so suit yourself.  Either way, I think we're covered.

I've also been advised that Dr. Steinberg wants me to stay in the Chicago area for up to three weeks after I'm released from the hospital.  I will be released with at least two, and possibly three, drains from my body - a blake drain from my abdomen, a foley catheter, and a suprapubic tube (or SPT).  The purpose of the blake drain is to drain excess fluid from the surgical area and to monitor the amount and type of drainage coming from the surgical area.  It will be removed first.  Next is the foley, which drains urine through the urethra.  That stays in for a week to 10 days after discharge, then is removed, and I get to learn how to pee again.  Last is the SPT, which stays in for another week to 10 days after the foley is removed.  It also drains urine from the neobladder, and also is used to flush the neobladder.  The surgeon won't want me to go home until the foley is out and he knows I can pee.  He'll probably be ok with Dr. Schoenberg removing the SPT.  I'll also be learning to control my urine flow by doing kegels.  Every mother who is reading this is nodding her head.  I'm with you, sister.  



 

Mets Day 15 - Surgery will be on May 2

These past 24 hours have given me whiplash.  Yesterday morning, Hopkins said that they could not move up the surgery from May 14.  Then MD Anderson questioned whether I should have surgery at all.  I was in the middle of arranging a consultation with MD Anderson when I learned that Dr. Gary Steinberg at University of Chicago might be able to do the surgery next week(!)

How did this come about?  Dr. Schoenberg had told us that Dr. Steinberg as a highly experienced colleague with whom we should check.  Chelsea emailed him with a summary of my case, and he promptly responded:

I would be happy to see your father and review his records and x-rays. I would recommend that he have surgery, but he needs to be seen and operated on by an expert. Many times the lymph nodes are necrotic and do not have residual cancer; however, an extensive and meticulous lymph node dissection needs to be performed. In addition, orthotopic neobladders are best performed by surgeons that perform them often, and few people worldwide, have my experience. I may be able to perform your father’s surgery next week. Wednesday May 2^nd  is not one of my block days but I can usually get additional time as needed. I do think that it is better to operate now rather than wait. I typically try to operate 4 weeks after completion of neoadjuvant therapy. Most important is surgeon experience as well as hospital experience. I have performed over 1300 radical cystectomies in the past 15-20 years and that experience is vitally important and helpful for patient outcomes.

I passed this information along to Dr. Schoenberg, who strongly endorsed going with Dr. Steinberg. After consulting with Jennifer and Chelsea, and exchanging a number of emails with Dr. Steinberg and his assistant, we've decided to go for it.  We're still planning all the logistics and some of this is doing it on the fly.  This morning I bought the tickets for Jennifer and me to fly to Chicago on the morning of May 1, then we will meet with Dr. Steinberg and do the pre-op.  Surgery will be at about 8:30 am on Wednesday.  We are expecting to be in Chicago for about 10 days.  Chelsea may come out for part of the time; she's checking on rearranging her finals schedule. 

This morning, Dr. Aragon-Ching called for an update.  We discussed the MD Anderson view, and she explained why she did not agree that chemo only was the best option.  I agree with her and Dr. Schoenberg and Dr. Steinberg -- surgery is the best, if not the only, chance at a cure.  The point is to remove the source of the cancer, so it doesn't keep pumping death throughout my body.  Hopefully, the removal of the lymph nodes, along with the bladder and prostate, will get most if not all of it.  To the extent anything remain, perhaps other chemo regimens can keep it in control, although those additional regimens probably would be part of clinical trials. 

Dr.  Aragon-Ching also wanted to make sure that we were carefully considering all of the pros and cons to going to Chicago for surgery, since it was so far from home.  She said that if there were complications, I might be there longer than intended.  I appreciated her acting as a check, and making sure that were were not reacting without thinking everything through.  At the end, she endorsed the decision to have the early surgery, and asked to me keep informed of my progress.  Maybe I'll send her a link to this blog. 

An interesting aspect of all of these developments was trying to balance this medical adventure with work.  I feel a deep sense of dedication to my clients and colleagues, and for a while was trying to balance the likelihood of moving up the surgery with the fact that I was scheduled to participate in a hearing in San Francisco 9 am on Monday, April 30, then be at another hearing in Norfolk Virginia at 11 am on Tuesday, May 1.  I had those flights all arranged, and I actually checked flight options to see if I could get from Norfolk to Chicago on Tuesday afternoon, before I realized that was insane.  I knew that my partners had offered to cover for me, and that I should be focusing on what is best for my health.  Once I made the decision to clear the decks of all work-related stuff, the work-related demands evaporated, and I was able to focus with greater clarity on my health.  That's the way it should be, and knowing that my partners are covering for me, and have my back, brings me a tremendous sense of relief.  I am grateful for their support, and working at a place that provides that support. 

Mets Day 14 - to cut or not to cut?

Several weeks ago I traded emails with Dr. Ashish Kamat at MD Anderson, seeking his input re micropapillary bladder cancer.  He was the lead author on an article in Cancer from 2007 titled, "Micropapillary bladder cancer: a review of the University of Texas M. D. Anderson Cancer Center experience with 100 consecutive patients" (link here).  I was inquiring whether he had availability to do the surgery earlier than May 14, if Dr. Schoenberg could not advance the date.  Dr. Kamat's response was troubling:

I am currently overseas, so briefly: if your tumor has truly progressed to proven metastatic disease while on standard chemotherapy, I would NOT recommend surgery at this. Rather, I would recommend additional, alternate chemotherapy regimens asap in an attempt to control what is most likely a systemic event at this time. (This is a conundrum with MPBC histology). If you wish, you can call our New Patient access line and request a consultation with our medical oncology team.

This information is opposite of what Drs. Aragon-Ching and Schoenberg told me last week.  I have forwarded Dr. Kamat's email to both of them; Dr. Aragon-Ching suggested that I consult with MD Anderson to find more about the "additional, alternate chemotherapy regimens".  Dr. Schoenberg responded: 

unable to move up the surgery because the hospital is moving to the new building and this has closed some of the OR's
with regard to Dr. Kamat's advice, I have no evidence that I can lean on that proves that you have metastatic disease. That said, it is always possible that you have positive lymph nodes and these will only be discovered at the time of surgery. I realize that you have been given conflicting information about this tumor's behavior and I am sorry if this has produced confusion. Our current practice is to recommend surgery for patients in your current situation irrespective to cell type (except in cases of small cell cancer which you do not have).
Perhaps a face-to-face consult with Dr. Kamat would be useful to you in helping you resolve your plan of action.
Please let me know if I can help facilitate this should you wish to make that trip.
Best,
-m

I have spoken with MD Anderson  and gotten the wheels rolling for a consultation. 

This conflicting information further reinforces my belief that medicine is an art laced with a series of assumptions and judgment calls, not a science where data is plugged in and the same answer is produced every time.  It's also frustrating to go through as a patient.  It's just a matter of life and death.  No big deal, right? 

Note also that Hopkins can't get an earlier date for the surgery.  So it will be on May 14, unless something changes.  My gut feeling is to proceed with the surgery, then pretty quickly get more chemo using a protocol to be determined.

(Knuckles whiten as I hold on tighter to this unending roller coaster.)

Mets day 13 - earlier surgery?

Last night I sent Dr. Schoenberg the following email:


> Per the enclosed, your staff has advised me that the earliest that you can do my RCP is on May 14.  As we discussed after you did my cysto last Thursday, I am very concerned about a long delay, and had understood from you that you agreed that the surgery should be done earlier.  My concerns about waiting are amplified because my TCC has both micropapillary and nested features, that the tumor has regrown so quickly since my second TURBT in January, and that the recent scans suggested that it has metastasized into my lymph nodes.  I feel like every day that I wait after terminating chemo is another day for the cancer to systemically spread.
>
> In light of these concerns, I would very much appreciate your views on the following:
>
> 1.  Is it in my best interest to get the surgery as soon as possible?  Put another way, how much do my risks increase by waiting until May 14?
>
> 2.  Is there any realistic chance that you will be able to move up the surgery date from May 14?
>
> 3.  Would you recommend that I reach out to any other surgeons to see if they could do the surgery faster?  Earlier you had send me the following list - should I be talking to them?
>
> Bernard Bochner-Memorial Sloan Kettering Cancer Center
> John Colberg-Yale University
> Thomas Guzzo-University of Pennsylvania
> Gary Steinberg-University of Chicago
> Ashish Kamat-MD Anderson Cancer Center Houston
> Seth Lerner-Baylor College of Medicine Houston
> Mike Cookson-Vanderbilt University Medical Center
> Eila Skinner-USC Medical Center Los Angeles

This morning, he responded (disdaining punctuation, per his usual practice):

i am going to look today to see if there is any earlier time to do you surgery
from a clinical perspective there is no demonstrable difference in risk between doing the surgery today versus May 14th but from a personal perspective I can understand wanting to get it done asap
i gave you the names of my trusted colleagues who i believe will do a good job for you should you choose to have the surgery elsewhere
i will let you know if we can move it up later today
best
-m

Mets Day 12 - Patience, patient

This morning Charlene Rogers (Dr. Schoenberg's assistant) emailed me:

"I know you are anxious to get the surgery behind you. Presently there is not an earlier date than the one Michelle gave you. Dr. Schoenberg is not able to obtain any extra operating room time.  If anything changes we will let you know."

So unless something changes, my surgery will be on May 14.  I can't control it, so I accept it.  I also am surprisingly ambivalent about it.  I know the surgery is necessary, and the sooner, the better, but I also know that it will be the start of several months of pain and frustration.  I'm not eager to quickly descend into that fiery pit.  I also feel like I have a lot to do before then - with the family, the honey-do list, things at work, etc.  I remind myself of Gibran's writings on time:
 
Of time you would make a stream upon whose bank you would sit and watch its flowing.
Yet the timeless in you is aware of life's timelessness,
And knows that yesterday is but today's memory and tomorrow is today's dream.
And that that which sings and contemplates in you is still dwelling within the bounds of that first moment which scattered the stars into space.
Who among you does not feel that his power to love is boundless?
And yet who does not feel that very love, though boundless, encompassed within the centre of his being, and moving not from love thought to love thought, nor from love deeds to other love deeds?
And is not time even as love is, undivided and spaceless?
But if in your thought you must measure time into seasons, let each season encircle all the other seasons,
And let today embrace the past with remembrance and the future with longing.  

Mets Day 9 - looking for an OR

This morning I've traded several emails and phone calls with Dr. Schoenberg's staff at Hopkins, trying to get an earlier date for my surgery.  I had been tentatively scheduled for surgery on May 21, but yesterday, Dr. Schoenberg said that he would ask his staff to look for the earliest available surgery slot.  So far, they've told me that they can reserve May 14, and they continue to look for earlier dates.  Apparently, Dr. Schoenberg's regular surgery day is on Mondays, when he has an OR and team scheduled for his use.  The Mondays prior to May 14 are all scheduled with cases that can't be moved; his staff apparently flip-flopped the case that was previously scheduled for May 14 to May 21.  For him to do surgery on other days, such as a  Wednesday, his staff has to check with other surgeons who have OR's scheduled for those days to see if one is available for his use, then he needs to make sure he has his team available.  These things take time, I was told, so I should remain flexible in the event an earlier date opens up. It's possible that I could be told of an earlier date with just a few days of notice.  I guess it's sort of like being on an organ transplant list, and being advised that a donor organ is available.  I'll just need to be ready to drop everything go.

Why the rush?  With my being a month or more past my last chemo treatment, there is nothing keeping my very aggressive cancer from rapidly spreading throughout my body.  Every day that I wait increases the risk that my cancer shifts from a regional disease that may be cured through surgery, to a systemic disease that surgery cannot cure.  I can't quantify the increase in risk, but would like to minimize it.  Having made the decision to proceed with surgery, I'm now eager to get on with it. 

I'm grateful that my law firm is being so supportive.  I've got several active cases with many deadlines, and I've been gratified by how many of my law partners have volunteered to cover for me on such short notice.  In the past, I've provided cover for others during their times of personal emergencies, and the wheel of karma is spinning so that I am the beneficiary.  It is good to work at a place that embraces its core values. 

Mets Day 8 - cysto and options

This morning I had a cystoscopy at Johns Hopkins by Dr. Mark Schoenberg.  He wanted to evaluate my bladder to see if there was any recurrence of tumor growth, and whether I would be able to tolerate surgery.  It was a relatively quick and painless procedure.  I had dye injected into my bladder so he could do a guided fluorescence cystoscopy -- somewhat more accurate than a regular standard white light cystoscopy.  Dr. Schoenberg observed that a tumor had regrown in the location where the big tumor originally was located.  It was about the size of a thumbnail, he said.  He also verified that there was no physiological reason to not have surgery, and that my ureters were not affected by the cancer.  All good news. 

Based upon this exam, and his review of the scans last week, and his long consultation with Dr. Aragon-Ching yesterday, Dr. Schoenberg recommends that I have nerve-sparing radical cystoprostatectomy (RCP) and a pelvic lymph node dissection (PLND) as soon as possible.  He is checking with his scheduler and hopes to know tomorrow when he can do the surgery.  He agrees that it should not wait until May 21.  My guess is that it will happen in early May, although there is an outside chance it could be next week.  Stay tuned for the actual date. 

We also discussed the type of urinary diversion that would be created during the RCP surgery.  He said that, in terms of the possible need for adjuvant (post-surgery) chemo, it made no difference whether I got a neobladder or an ilial conduit.  He said that a neobladder would require more physical therapy, but that would not preclude chemo.  We've decided to go with the neobladder, although he will still mark me for an IC and will do that if for any reason he can't do a neobladder. 

With regard to the metastases, Dr. Schoenberg tried to put the best spin possible on it.  He said that the CT and MRI scans put the size of the lymph nodes was under 1 cm (barely -- they were .9 cm on the short axis), and he said 1 cm is the rule of thumb for significant metastases.  It doesn't mean the cancer has not metastasized, he said, but that maybe it hasn't spread too far.  He said he was hopeful that, with immediate surgery, we'd be able to contain the spread of the cancer outside the bladder.  I took those comments as his way of peddling hope, and appreciated it for what it was.  But I'm also realistic about the odds.  

He also called surgery a "crude solution", since the idea is to cut out everything that might have cancer in it, and hope you got it all.  It reminded me of the first time that we spoke in December 2011, when he compared surgery to a hammer and said that, when surgery was your only tool, everything looked like a nail.  Guess who's about to get hammered.  I feel like Wile E. Coyote seeing the oncoming Acme anvil . . .

 

Mets Day 6 - pre-op for Thursday's cysto

This afternoon I drove to Baltimore for the pre-op for Thursday's cysto, when Dr. Schoenberg will do a trans-urethral examination of my bladder.  He will use a new type of dye and light that will make it easier to detect if my bladder still has cancer in it (which is almost certainly the case, since the chemo did not kill it).  The pre-op was routine.  The people at the pre-op said that Dr. Schoenberg schedules multiple cystos on Thursdays, and goes from OR to OR to do them.  They were not sure how much time we would have with him, although he has been very generous with his time the previous times we consulted with him.  

One of the things that Dr. Aragon-Ching suggested we discuss with Dr. Schoenberg was urinary diversion options, and whether an ilial conduit -- the diversion of urine into an external pouch -- was better than a neobladder if additional chemo might be indicated.  It's easier to recover from an IC, and if chemo is needed soon after surgery, then that might be the better option for long-term survival, even though I'd prefer a neobladder. 

Assuming Dr. Schoenberg agrees that we should go forward with surgery, I'd like to go forward with it as fast as possible.  Bit his scheduler has told me that the earliest slot he had available is Monday, May 21.  Another question I have for him is whether waiting for more than a month will increase the risk of additional metastases.  

Mets Day 5 - a ray of hope

Today I met with my oncologist, Dr. Aragon-Ching, for more than an hour.  We went over last week's scans in detail.  Most importantly, she said that the CT scan's finding of decay of the spine almost certainly was not related to the cancer, but was just normal arthritis.  We discussed how the earlier CT scan noted that there was nothing remarkable about the bones.  She said that, if it has spread to the bone, there would be evidence of solid tumors, and the fact that the CT scan found none told her that the cancer had not metastasized to the spine.  I gave her copies of all of the scans, and she said that she would read them and have others in her group also read them to be sure. 

Because I'm impatient and didn't want to continue in limbo, I called and spoke with the radiologist who read the CT scan and prepared the report.  She told me that both the December 2011 and April 2012 CT scans showed degradation in the spine, and that it was in no way connected to my cancer.  I was just getting old, she said.  Being told that I'm getting old and my bones are getting more brittle was never such good news.  This means that I'm probably not going to die this year from metastatic cancer in my spine, which had been weighing heavily on my mind since last Thursday. 

Back to my meeting with my oncologist.  She said that she was disappointed that the CT showed that there was metastases in three lymph nodes that were near the right side of the bladder where the largest tumor was located.  She said that this told her that my type of cancer was chemo-resistant, and that further chemotherapy using the same GemCis regimen was unlikely to stop or reverse the disease.  She suggested that it was possible that the chemo may have slowed the progression, but that we'd never know for sure.

She said that the fact that the lymph nodes were still relatively small suggested to her that the metastases was still early, and that there was still hope that the cancer was localized, and not systemic.  She said that, in some patients, bladder cancer that had nodal involvement can stay in the immediate area.  In that case, the best thing to do is stick with the original treatment plan:  radical cystectomy and lymphodectomy, and hope that all of the parts of the body that had cancer have been surgically removed.  She said that Dr. Schoenberg was best suited to make that decision, and strongly recommended that we proceed with the cystoscopy on Thursday.

Dr. Aragon-Ching said that she did not recommend any more chemo right now.  She said that I had been given the best first line chemo treatment, and the fact that the cancer did not respond told her that, at this point, more chemo would be ineffective.  She also said that there was no consensus on second line chemo for bladder cancer (unlike many other cancers, such as breast cancer, that have more than a dozen proven chemo options).

The big unanswered question is whether the metastases are local or systemic.  If it stays local, and the surgeon can get it all, then my prognosis is very good.  But if the cancer is throughout my vascular system, she said, then it is just a question of time before it would present itself elsewhere.  She said that there was no way to know that one way or the other before it actually happens and shows up on a scan.  There are no tests or scans that can tell in advance whether my cancer is throughout my system and getting ready to develop distant tumors elsewhere.  You just have to wait and see.  In response to my question of how often bladder cancer with nodal involvement becomes systemic, she said that it was relatively common.  She didn't want to put a percentage on it, but I recall reading that it's greater than 50%. 

Given the high odds that it is systemic, she said that the question of whether to proceed with the RC was a patient-specific question.  She said that, if I was in my 70's, she would probably not recommend an RC.  But since I am only 49, she'd recommend going forward, even though it's a difficult and complicated surgery with a long recovery time, and even thought there is a high chance that the cancer may recur in a distant location. 

She said that, if I elected to go forward with the RC, I would be closely monitored for recurrence.  Until and unless there was any evidence that the cancer had spread, she would not recommend any additional chemo.  If there was recurrence, then additional chemo and radiation would be temporary treatments, but not cures.  The only cure at this point to to go for the RC and hope that gets all of the cancer. 

So, while the news is still staggering, it's not an immediate death sentence.  My odds of 5 year survival have dropped to around 50%, but at this point I'll take the coin toss over cancer of the spine.

It's amazing how a change of perspective can make all the difference.  If someone told me a month ago that my odds had dropped from 85/15 to 50/50, I'd be rather upset.  But going from 1/99 to 50/50 makes my day.

Mets Day 3 - MRI results

On Thursday, I had nearly two hours of MRI scans.  I had a pelvic scan, with and without contrast, and an abdominal scan, with and without contrast.  As the machine slowly slid me into that tube, my arms above my head, I was thankful that I was not claustrophobic.  After an hour in the tube, I nonetheless began to uncomfortable.  My nose was about an inch from the tube wall, and my elbows had little room for movement.  I thought it interesting how an MRI seemed to distort the time-space continuum.  The technician would say, "the next scan will take three minutes."  Ten minutes later, the scan would end, and the technician would say that the next scan would take 90 seconds.  Fifteen minutes later, it ended.  At times I was instructed to hold my breath as contrast was pumped through the IV and my abdomen was imaged.  I visualized that I was swimming underwater, trying to see how far I could go before I had to surface.  One more stroke, then another, then another, then finally I could exhale.  As I felt the noisy thumping of the machine, like a badly unbalanced washer during a vigorous spin cycle, I sensed the fluid in my cells jostling back and forth, and I felt my pelvis getting uncomfortably warm.  I thought of the scene from Gremlins where one of the evil critters was lured into the microwave, soon followed by a green explosion.  I remembered that the floor and walls of the MRI room was all tile, and that there was a mop and bucket in the corner.  That realization did not comfort me.  MRI, I realized, was an acronym for Microwave Roasted Individual.  

I received the scan results Friday afternoon.  The results were correlated with the CT scan of Wednesday, and the scans generally correlated.  Here is the key paragraph:






One new piece of information in the MRI scan is the "abnormal nodular focal soft tissue thickening and enhancement along the serosal surface of the lateral wall of the bladder."  As I understand it, the serosal surface is the outermost lining of he bladder, and the suggestion that the cancer has gotten into the serosal surface means that it has progressed from muscle-invasive (T2) to penetrating the muscle wall (T3).   If it wasn't for bad news, there would be no news at all. 

After the CT and MRI reports were sent to Dr. Schoenberg at Hopkins, we exchanged emails.   He suggested 


"that we talk on Monday afternoon to determine next step since the lymph node involvement may require additional chemotherapy.  That said, will probably recommend that you move forward with cysto as scheduled."

The cysto is the trans-uretheral examination of the bladder scheduled for this Thursday, not the major surgery to remove the bladder.  Whether that RC surgery will happen depends on the consultations that I will have next week.

On Thursday evening,  after I received the CT results, we had a family council where we talked about the fact that my cancer had spread.  We honestly acknowledged that we did not know all of the details, but that if the cancer had gotten into my spine, I likely had only a few months to live.  We each talked about how we felt, and expressed our love and appreciation for each other.  We drew upon our faith, and belief that mortality is but a small slice of our eternal existence.

The reaction of Garrett (age 14) was interesting.  The first thing that he asked was whether there was any information that we had but were not sharing with us.  I was struck by how kids often perceive when things are being hidden from them.  We assured him that he knew all that we did.  He nodded, then said how he tried to look on the positive side, and not dwell on the things that were painful.

Kirsten (17) had a harder time with the news, and said that we needed some time to process it.  She didn't want to talk about her feelings too much, and after the council went to her best friend's house to talk.

Spencer (21) said that he wanted to spend more time doing things together as a family.  He said that, after a year where he had spent almost every night going to recovery meetings, he had his feet under him and was in a much better place.  He spoke of missing time with his family, since he usually was gone while I was home, and vice-versa.  Jennifer and I smiled, because it was just a few years ago that Spencer was actively fighting against spending time together as a family.  Actual quote from Spencer at age 17:  "Mom, you are too into this family unity crap."  Now, four years later, Spencer was wanting more family unity crap.  Jennifer said she was going to make t-shirts that said "We [heart] family unity crap."

Chelsea (23) talked both on the scientific, medical level, and on the spiritual level.  It was interesting to listen to her balance the practical facts with the deep commitment she has to her religious beliefs.

Josh (27) spoke of how he admired that we were facing this battle with calmness and determination, balanced by an absence of fear of death.   

We ended the family council with a very heart-felt prayer, where we asked for greater acceptance, understanding, love and compassion.  We asked that this experience could strengthen our spiritual depths, and reaffirm our willingness to look at life not from a short-sighted mortal perspective, but from the Lord's long-term view.  It was a very tender and spiritual moment.  It reaffirmed my belief that this journey with cancer is not about the destination, but about how we walk the path.  I do not know how long my feet will continue this walk in mortality, but I am determined to walk it well, to honor my commitments, to be a good example, and to give thanks for each day that I have with those I love.