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.