Mets Day 1168: Tenth Opdivo infusion & "complete response"

Today I met with Dr. Hahn prior to getting my tenth infusion of nivolumab. We reviewed the CT scans, and he pulled up the images and showed me the nodes in my neck that three months ago had been more than three times larger.  Dr. Hahn said that the target nodes were now about the same size as regular nodes.  The only reason they were paying any attention to them is because the doctors knew that they used to be the site of metastatic tumors.  If a radiologist unfamiliar with my history and without access to my prior scans looked at my scans of last week, the radiologist likely would not conclude that there was evidence of metastatic disease.  Dr. Hahn added that there was no evidence of carcinoma anywhere else in my body. In his view, I have had a complete response as a result of my nivolumab treatments. Woo hoo!

Because we know that the nodes were the site of tumor cells, however, Dr. Hahn is not willing to say that there is "no evidence of disease", or NED. He does not know whether there is any active cancer left in those nodes. He said it was possible that the tumors are completely gone, or that any residue is inert. But it is also possible that the cancer is still present, but just not growing right now. And of course my cancer is systemic, and not confined to those lymph nodes that were actively growing. The hope is that the nivolumab has acted upon the cancer where ever it is, but it's too soon to say that it is eradicated. Only time will tell whether it truly is gone, or whether it is still lurking and searching for a way to start growing again.

At the Spring 2015 meeting of the American Association for Cancer Research (AACR), some papers were presented that noted that many cancers contained multiple mutations, yet most tumors were a result of the active growth of a single mutation. The researchers theorized that cancer might be viewed as a line of mutations, with the dominant mutation growing fastest, and the other mutations biding their time. If a therapy such as chemo or immunotherapy kills the dominant mutation, a less dominant mutation might kick in and start growing. In my case, it may be that my two different types of platinum-based chemo could have suppressed the mutation that caused my original tumors in my bladder. The PD-L1 mutation may then have kicked in, growing in my lymph nodes in my neck. The nivolumab appears to have acted on those tumors, prompting today's good news of a complete response.  The questions now are (1) whether the effect of the nivolumab on the PD-L1 mutated tumors is permanent, or temporary, and (2) whether another one of my mutations will kick in and start growing. Like I said, only time will tell.

For now, I'm going to bask in the sun of the pronouncement a complete response. I'm so grateful for this news. I believe it is an answer to the prayers of so many. Most prayers are answered in the form of the actions of other people, and I'm thankful for the actions of the doctors and other health care professionals who have made possible my access to this newly developed drug. I'll continue with the nivolumab infusions, as data from the metastatic melanoma clinical trials suggests that continuing with the drug increases the odds that the tumors will not reappear.

After Dr. Hahn and I finished celebrating his pronouncement of a complete response (which took about a half second), I asked him about the radiologist's observation that my thyroid cyst seemed to be slowly increasing in size. I told him how that cyst had been noted on my scans for quite a while, and that everyone had ignored it. He said that it was highly unlikely to be cancerous, and even less likely that it was related to my metastatic bladder cancer.  But he said that I should have an ultrasound and biopsy done to make sure. He'll put in the orders and I'll schedule that up in the next month or two.

I also asked him about the small pulmonary cysts noted in the chest scan, and whether  they were related to my pulmonary embolisms of last fall.  He said that they were not, but were instead residual scar tissue from old viral infections. The radiologist felt obligated to comment on them, but they were nothing to worry about. My tenth infusion of nivolmab was unmarkable - my port is working just fine, and everything went like clockwork (albeit a slow clock).

I've decided that I'm going to drop the "Mets Day xxxx" count from the title of my blog posts.  I know that I've still got mets BC, but I'm hoping that I can now focus on getting to five years with no evidence of disease. If and when I hit that mark in the summer of 2020, then perhaps I can consider myself to be cured. That's a long shot, but it's nice to think about. Maybe I'll replace the mets day count with "CR", or maybe I'll just drop the whole counting thing.

I'm mulling on what I should do to celebrate my CR. Maybe I'll buy another Harley. I sold my hog last spring after realizing that I'd ridden it less than 100 miles in 2 years, and thinking that I'd likely given up riding for good. Hope rides a Harley. Humm, I like that.

Mets Day 1163: Today's CT scan: holding steady

This morning I drove up to Baltimore for another CT scan. My clinical trial protocol calls for a CT every six weeks. Today's scan was the fastest yet: I was in and out in less than 45 minutes. This evening JHUH posted the results for my neck. The radiologist wrote:

There is a left level 5 A lymph node measuring 1.3 by 0.6 cm, unchanged compared to prior exam. Additional right level 5 lymph node is identified on series 2 slice 58 measuring 0.7 by 0.6 cm , also unchanged compared to prior exam. Previously seen target left level 5 (slice 79, series 2) and level 4 (slice 90, series 2) nodes and additional small scattered nodes are not significantly changed. No additional enlarged neck lymphadenopathy is identified by size criteria.

It's good news that my tumors have not increased in size. But the fact that they did not further shrink makes my wonder if the nivolumab has had the maximum effect. I guess I'm spoiled after my last two scans showed a 50% reduction, then a 25% reduction, respectively. My next infusion is in a week; I'll ask Dr. Hahn for his thoughts then.

The results for my torso and abdominal CT scans have not been posted. I assume they will show up in the next day or so. I'm not expecting anything significant there, since the prior scans have seen nothing remarkable.

Unrelated to my cancer is the fact that I have a thyroid nodule that is slowly growing in size. It's been noted in my CT scans since 2011. Today's scan measured it at 1.9 cm. If it were to grow a lot more, it could affect my ability to breathe or swallow. But so far it's been so low on the list of things to worry about that I've ignored it. I intend to continue doing so.

Mets Day 1156: Ninth Opdivo infusion

I reluctantly flew back home on Tuesday night, leaving a crying Rose who did not want "Bampa" to go. I'd so enjoyed the time that I'd been able to spend with her, as well as with Lily, and Chelsea and Josh. But my next infusion was scheduled for Thursday, and in some ways my life depended upon my getting home.

While I was in Utah, we learned that our lake house had sustained severe damage as a result of water damage and subsequent mold. For reasons no one can explain, the water filter in the fridge developed a crack, letting water cascade through the fridge and out the bottom, where it spread throughout the first floor as well as seeping throughout the basement. The carpets throughout the house were soaked, as well as the upholstered furniture, and every surface was coated with mold. The house interior will have to be gutted down to the studs, dried, and treated until it is certified to be mold-free, then rebuilt. All the furnishings will be trashed. Fortunately, all of the expenses will be covered by our homeowner's insurance; State Farm already has agreed to extend coverage, and remediation is underway.  I'm driving down there tomorrow to meet with the claim adjuster and project supervisor. I guess this means that we won't be able to use our house this summer, but after it's done, we'll probably put it on the market as essentially be getting a new house. It's too bad we didn't get around to selling it before this happened, but we'll deal with it.

If that wasn't enough, while I was in Utah another water leak started in our Great Falls house. The toilet supply line valve in one of the upstairs bathrooms started leaking, staining the kitchen ceiling. My homes are like my neobladder, I've decided. I should expect unexpected leaks. Jennifer shut off the toilet water line and added it to my honey-do list. It's good to have a purpose in life.

After I landed at 1 am yesterday morning, I got a few hours of sleep, then went to the downtown DC Labcorp for my blood work. (I went downtown because I needed to make my monthly appearance at my law firm, and assumed that the Labcorp was staffed by competent people.) I found the lab receptionist to be deeply engrossed in a conversation with another employee - something about how all men were jerks - and kept me waiting for about 15 minutes before acknowledging my existence. She demanded for my doctor's orders and huffed when I said that they were already in their system. She wearily dragged her hands six inches to the keyboard and glared at the monitor, occasionally stabbing at the mouse. When she located my orders, I asked her to confirm that the lab would be able to do the blood work that day, as the orders were marked "stat". She stared at me as if I had a massive zit on the end of my nose, then without looking at the monitor said that my orders were not marked stat. I explained that I knew that they were, as they were standing orders, and I had gone to other Labcorp locations on the same orders with no problems. She stared at me again, then summoned her fellow employee to look at the screen. No, said man-hater number two (barely glancing at the screen), she could not see "stat" in the orders. They could draw my blood, they said, but it would not be analyzed for a couple of days. Realizing that there was nothing I could do persuade these good people otherwise, and not eager to subject my veins to vicarious revenge on behalf of women everywhere, I decided at I would just show up early to Hopkins to have my blood drawn by people with a semblance of professionality. Moral: never again go to the Labcorp location at 1145 19th Street NW.

The downside was that I had to fight my way through rush hour traffic this morning, with it taking two hours instead of the usually hour to get to Hopkins.  The horror! Fortunately, my port immediately gave a return, and the blood draws were quick. Unfortunately, the Hopkins lab was backed up, and so I had to wait an extra two and a half hours for my nivolumab dose to be compounded at the pharmacy.

Meanwhile, I met with Dr. Hahn. He introduced me to another doctor who was visiting JHUH, and called me the "poster child" for the nivolumab clinical trial. I thought of the "Save The Children" posters and thought his description was spot-on. I asked what new things he learned at ASCO about the durability of  nivolumab on metastatic urothelial carcinoma. He said that no new data had been published specifically on that point. There was newer data on nivolumab on metastatic melanoma, which showed that the survival curves that had been published last November were essentially unchanged. Dr. Hahn said that he expected that the survival curves to be similar for patients with metastatic bladder cancer, i.e., of the 60% or so of patients that had an overall response, about half could be expected to have a durable response lasting for several years. But accruing that data will take some time, especially since nivolumab was first administered to mets BC patients less than 12 months ago. But the recent sea change in how doctors are now classifying cancers (by genetic type instead of location) means that the data from metastatic melanoma patients and non small cell lung cancer patients can be more readily applied to urothelial cancer patients like myself.

Dr. Hahn added that, with regard to durability, data would accrue as patients getting nivolumab stopped  getting doses, then restarted when their cancer started growing again. He said that the trial sponsor had been granting permission to some patients to "go on holiday" from therapy, with the understanding that they would go back on if their cancer came back.  Now that the drug has been approved by the FDA for melanoma and NSCLC, more patients would be getting shorter doses of the drug  (probably due to cost concerns), and that data would provide insight as to both how long I need to get betting this drug, and how long the effect will last. Good news, I guess, but I have little interest in discontinuing the trial prematurely. The plan is that I will continue to get my infusions every other week for quite a while - maybe into 2017.

Dr. Hahn also talked about how the next exciting area of research was using combination therapy, such as GemCis chemo and immunotherapy, at the same time.  He also mentioned how there were so many genetic mutations that we did not yet know how to treat, and expected that more immunotherapy drugs would be developed to target the damage done by those mutations.  I could sense his enthusiasm and excitement at those future developments.

At 3 pm, the pharmacy finally sent up my nivolumab, and the stuff was pumped into my body.  By 4:15 I was out the door, just in time to sit in rush hour traffic out of Baltimore and on the beltway on the way home. I am richly blessed.

Mets Day 1151: My wife's church talk on service and caregiving

Our church has an all-lay clergy, and members of the congregation take turns speaking at the primary congregational meeting. I've posted a couple of my church talks; following is a recent talk by Jennifer, my wonderful wife and patient caregiver during my cancer journey. I am posting with her permission.

            So, Brother B. called me a couple of days ago as a pinch speaker for today as the scheduled speaker had to go out-of-town unexpectedly.  Now, I don’t recommend short notice to speak in sacrament meeting, but I am grateful for the opportunity to share some thoughts with you about service.

            A great example of unselfish service is the late Mother Teresa of Calcutta, whose vow committed herself and her fellow workers to “wholehearted free service to the poorest of the poor.”  She taught that “one thing will always secure heaven for us—the acts of charity and kindness with which we have filled our lives.”  Mother Teresa stated that “we can do no great things, only small things with great love.”  When this wonderful Catholic servant died, the First Presidency’s message of condolence declared that “Her life of unselfish service is an inspiration to all the world, and her acts of Christian goodness will stand as a memorial for generations to come.”  That is what the Savior called losing our lives in service to others.

            What is service, and why is it so important in the gospel of Jesus Christ?  We are commanded to serve one another.  The first commandment is to love God.  And the second is like unto it, Thou shalt love thy neighbour as thyself.  We demonstrate our love when we help and serve each other.

            Elder Steven E. Snow said that as we serve in our various church callings, we bless the lives of others.  In missionary work, lives are changed as people learn of the gospel of Jesus Christ and receive a testimony of its truth.  By the sacred work in the temple, we bless the lives of those who have gone on before us.  In gospel service, we have the privilege to teach others, to strengthen the youth, and to bless the lives of the little children as they learn the truths of the gospel.  In church service, we learn to give of ourselves and to help others.

            President Spencer W. Kimball, a great example of service, said: “God does notice us, and he watches over us.  But it is usually through another mortal that he meets our needs.  Therefore, it is vital that we serve each other in the kingdom.”  The responsibility of service in the Church, however, does not relieve us of our responsibility to serve our families and our neighbors.  President Kimball went on to warn, “None of us should become so busy in our formal Church assignments that there is no room left for quiet Christian service to our neighbors.”

            We also have a responsibility to render service in our communities.  We should work to improve our neighborhoods, our schools, our cities, and our towns. We can commend those in our midst who, regardless of their political persuasion, work within our local, state, and national governments to improve our lives.  Likewise, we can commend those who volunteer their time and resources to support worthy community and charitable causes, which bless the lives of others and make the world a better place.

            Service changes people.  It refines, purifies, gives a finer perspective, and brings out the best in each one of us.  It gets us looking outward instead of inward.  It prompts us to consider others’ needs ahead of our own.  Righteous service is the expression of true charity, such as the Savior showed.

            Service increases our spirituality.  To explore how it does, I’d like to share with you briefly ten aspects about service from Elder Derek A. Cuthbert.  First, service helps us establish true values and priorities by distinguishing between the worth of material things that pass, and those things of lasting, even eternal, value.  If you would find yourself, learn to deny yourself for the blessing of others.  Forget yourself and find someone who needs your service, and you will discover the secret to the happy, fulfilled life.

            Second, service helps us establish a righteous tradition.  This is so necessary, particularly among young people.  Wise parents will provide service opportunities in the home for their children from an early age.  Growing up with this tradition will blossom into community service and Church service.  It will develop a spirit of volunteerism in a world where people more often ask, “What’s in it for me?”  The Lord has counseled: “For behold, it is not meet that I should command in all things; …“Verily I say, men should be anxiously engaged in a good cause, and do many things of their own free will, and bring to pass much righteousness.” (D&C 58:26–27.)

            Third, service helps us overcome selfishness and sin.  Sin is for one’s own ends, not another’s—certainly not for the Lord’s ends.  Service, on the other hand, is unselfish and constitutes a positive power for good.

            Fourth, not only does service overcome selfishness and sin, but it helps to recompense for sin.  We can express regret and feel remorse for things done wrong, but full repentance should include recompense, such as giving service allows.

            Fifth, service helps us generate love and appreciation.  We come to know people by serving them—their circumstances, their challenges, their hopes and aspirations.

            Sixth, service is the principal way of showing gratitude to the Savior.  We need to fill ourselves up with gratitude for His redeeming love, His infinite atoning sacrifice, His obedience to the will of the Father.  As we become full of gratitude, it overflows into service, and “inasmuch as [we] have done it unto one of the least of these [his] brethren, [we] have done it unto [Him].” (Matt. 25:40.)

            Seventh, service channels our desires and energies into righteous activity.  Every son and daughter of God is a storehouse—even a powerhouse—of desires and energies, which may be used for good or evil.  This great potential needs to be harnessed to bring blessings to others.

            Eighth, service helps us cleanse ourselves and become purified and sanctified.  Not being perfect, are we not all sinners?  Yes, we all need the redeeming and atoning blood of Christ to purge us of our sins.  How is this accomplished? The way is through Christlike service.

            Ninth, charitable service helps us do as the Savior did, for was not His whole ministry one of reaching out and helping, lifting and blessing, loving and caring?  Jesus declares, “I am among you as he that serveth” (Luke 22:27), and again, “For I will raise up unto myself a pure people, that will serve me in righteousness” (D&C 100:16).

            Tenth, service helps us to get to know the Savior, for “how knoweth a man the master whom he has not served?” (Mosiah 5:13.)  As we immerse ourselves in the service of others, we find our spiritual selves and come unto Him.

            In all of these ways, righteous service brings us nearer to Christ, increases our spirituality, and brings others likewise.  As we give Christlike service, it helps us grow spiritually, “[put] off the natural man and [become] a saint” (Mosiah 3:19)—that is, one who is honestly trying to follow the Savior and doing what He would want us to do.

            I’d now like to focus on a specific type of service: caregiving, which I’ve experienced for the past three and a half years as a cancer caregiver to my husband, Ken.  I’ve learned much spiritually, physically, emotionally, and spiritually by serving in this way, and recently received this letter from a far-away friend in need:

Hi Jennifer,

            I’ve thought about you many times over the past few months.  I wonder how you, Ken, and your family are doing.  I moved in with my parents this winter to help care for my mother.  She has been bedridden for three months in excruciating pain.  I've had a very full plate dealing with her care, doctor's visits, the cooking and cleaning, working part time and trying to build my business.  I have been isolating from friends and finally realize I need to come up for air and reach out to the people in my life who I care about and want to maintain contact with.

            I didn't realize being a caregiver was so incredibly hard and emotionally draining.  That's one of the reasons I have thought about you so much over the past few months.  I've wondered how you are dealing with it and how you are coping emotionally.  I'd love to know about any tools you are using to assist with your day to day situation.  I find there is never enough time in the course of a day to do what needs to be done, so I feel like I'm always running but standing in place.  My mother isn't terminally ill, just in chronic debilitating pain.  I don't know how to gear myself up for the possibility that she could live like this for years.

            I came back into town on Monday at noon and immediately drove to my job.  After that, it was back to my parents’ house to care for my mother and learn about how she fared over the weekend.  I read all the medication logs we keep, pain level notes, conversations with doctors, etc.

            I've started seeing a counselor to have an outlet for the emotional turmoil I've been going through in the past few months.  It helps, but I'd also like to have contact with people who are in similar situations.  I realize I need to build a support system for myself while I'm part of my mother's care giving team.

             I'm making a commitment to be better at keeping in touch.  It's part of my self-care in this chaos.  Miss you!  Love, your friend

And my response to her:

Hi, my friend –

            It's good to hear from you - sounds like you're juggling many activities and concerns in life.  Although I don't have answers or advice, I can definitely empathize with your situation, and will share some caregiving insights and ideas to consider - take what you want, leave the rest.

             First, in reading through your letter, it seems that you're already aware of several effective tools for self-care, especially during the intensity of caregiving:  You said "I finally realize I need to come up for air and reach out to the people in my life who I care about and want to maintain contact with".  This concept is critical in caregivers' self-care, as is having healthy outlets for the swirling mix of emotions often inherent in caregiving - such as maintaining involvement in hobbies, working with a skilled counselor, and having contact with people who are in similar situations.  You're the best person to ask what tools you need in a support system for yourself while you're part of your mother's caregiving team - what are your spiritual, physical, emotional, and mental needs and how can they best be met?  Which of them are non-negotiable, and which of them are flexible and sometimes optional (needs vs. wants)?

             As caregivers, it's essential to pace ourselves and take good care of ourselves, as no one else knows, comprehends, nor necessarily attends to our needs in these difficult times.  Caregivers do best when we meet our need for food, water, sleep, exercise, prayer, meditation, and use whatever tools work best for us to "relax" or at least decompress during stressful times.  Initially in caregiving, we likely experience the effects of intense emotional whiplash, so it's wise to be gentle with and kind to ourselves as we transition from being sprinters in navigating difficulties, to pacing ourselves in the marathon of some types of caregiving.  Perhaps we can discuss our situation with a few trusted people who can help us move through the caregiving journey with at least some degree of dignity and grace (or sometimes not!)  We can learn that it's okay and healthy to lean on folks for support in this process.  During the most intense caregiving times, hopefully we can call on friends in our church community and/or neighborhood to help us with caregiver breaks, preparing meals, and doing other service, with one of them designated to coordinate these efforts so we can focus our energies on regaining and maintaining our balance.  We also can have spiritual advisors and trusted confidants who assist us personally.

             Hopefully, some of the above will help in releasing your feeling of running but standing in place, so that you can experience the feeling of stillness in motion, as caregiving is rarely static nor predictable.

             Take good care of yourself, and I'll keep you and your mother in my prayers.  Love, Jennifer

            Elder Jeffrey R. Holland gave wise counsel to caregivers in the October 2013 General Conference: QUOTE “Watch for the stress indicators in yourself and in others you may be able to help.  As with your automobile, be alert to rising temperatures, excessive speed, or a tank low on fuel.  When you face “depletion depression,” make the requisite adjustments.  Fatigue is the common enemy of us all—so slow down, rest up, replenish, and refill.  Physicians promise us that if we do not take time to be well, we most assuredly will take time later on to be ill.”

            “If you are a caregiver, try not to be overwhelmed with the size of your task.  Don’t assume you can fix everything, but fix what you can.  If those are only small victories, be grateful for them and be patient.  Dozens of times in the scriptures, the Lord commands someone to “stand still” or “be still”—and wait.  Patiently enduring some things is part of our mortal education.”

            “For caregivers, in your devoted effort to assist with another’s health, do not destroy your own.  In all these things be wise.  Do not run faster than you have strength.  Whatever else you may or may not be able to provide, you can offer your prayers and you can give “love unfeigned.”  “Charity suffereth long, and is kind; … [it] beareth all things, … hopeth all things, endureth all things.  Charity never faileth.” CLOSE QUOTE

            Earlier this month, as a counselor in our ward’s Relief Society presidency, I attended an Association of Mormon Counselors and Psychotherapists conference, where one of the workshops was titled “Compassion Fatigue”.  Compassion fatigue is the gradual lessening of compassion over time leading to indifference, stress, anxiety, guilt, and decreased capacity to be authentic and present with another.  Contrast that with compassion satisfaction, which is positive feelings that helpers feel as a result of what they do, including a sense of fulfillment, motivation, and satisfaction of the impact one has on another.  Consider asking yourself: are the ways in which I serve leading me to experience compassion fatigue or compassion satisfaction?  In my good, better, best efforts, am I remembering to put on my own oxygen mask first before rushing off to help others with theirs?

            As many of you know, I’ve had and continue to have the privilege of participating in individual and family clinical social work, and am currently pursuing my Master of Social Work with an emphasis in expressive arts.  One of my most influential social work mentors is a woman named Brené Brown.  She has a Ph.D., is a licensed social worker and research professor at the University of Houston Graduate College of Social Work.  The main concept in her work is wholeheartedness, which includes letting go of exhaustion as a status symbol, productivity as self-worth, and anxiety as a lifestyle so that we can cultivate play, rest, calm, and stillness.  Calm is creating a perspective and mindfulness while managing emotional reactivity.  Stillness is not about focusing on nothingness; it’s about creating a clearing.  It’s opening up an emotionally clutter-free space and allowing ourselves to feel and think and dream and question.

            Many times in the scriptures, we read that Jesus Christ, after His numerous acts of service and caregiving efforts, retreated to the wilderness alone.  It’s my belief that Jesus Christ did so to cultivate calm and stillness as He regrouped and recharged through rest.  May we follow His example of unselfish service while simultaneously taking good care of ourselves as we serve others is my hope and prayer in the name of Jesus Christ, amen.