Monday, Monday, so good to me
Monday mornin', it was all I hoped it would be
—opening lyrics to Monday, Monday by the Mamas & Papas (1966)
I know that Mondays generally have a poor reputation, but yesterday turned out to be a really terrific day for me.
1. Health Costs
After being buried in medical paperwork over the course of my hospitalization last January and subsequent battle with cancer (multiple myeloma) the last seven months, I've been in limbo regarding what portion of my staggering medical costs would ultimately fall to me to reimburse. While I had Medicare coverage in place as well as supplemental insurance (with Aetna for the period Jan 1-March 31, and with Medica from April 1 onward) it has not been easy to tell who was going to foot the bill for everything when the music stopped.
Part of what makes it hard is the long time lag between services and billing (in some cases months). Another is the way that doctor and hospital bills are typically recorded separately, even though they are coming from the same entity (in this case, St Luke's Hospital in Duluth) and arriving under the same letterhead. It is the very devil knowing how costs have been attributed and whether or not you've seen everything.
When you further add in the likelihood of 500-lb sumo wresting between the hospital and my insurance carriers, it leaves a financial lightweight like me breathless and confused. I want to be responsible for my bills—but what, exactly, are they?
I had delayed making payments on my St Luke's bills because the numbers kept changing and I am loath to accidentally overpay. I wanted to make sure both that the bills were complete and that all the intramural wrangling with the insurance companies was complete before I started signing checks.
Thus, imagine my chagrin when I received a call last Thursday from a collection agency that was inquiring about my overdue St Luke's account. Yikes. I had hardly had any contact (other than routine paperwork) from St Luke's accounts receivable department and here they'd turned it over to a collection agency.
From the person I spoke with, I was—for the first time—able to get straight answers to four questions: a) did this cover hospital bills, doctor bills, or both (answer: just hospital); b) over what period of time were the bills for (answer: Jan 1-March 15); c) could I count on the hospital bills being complete for that period (answer: yes); d) had all the negotiating with Aetna, my supplemental insurer, been completed relative to my bills (answer: yes). OK, that's what I needed to know to be ready to start making payments.
I was quickly able to negotiate a payment plan whereby I contributed $250/month against an outstanding debt in he vicinity of $5500.
That done, I still had important outstanding questions about my overall financial liability:
Open Question #1: What would be my portion of the doctor fees for the first quarter of 2016?
Open Question #2: What might I yet owe for hospital charges for March 16-31, the remainder of the time I was covered under Aetna? While I was not hospitalized that final fortnight of the first quarter, there was ongoing testing and infusion therapy, so I'm expecting further charges.
Open Question #3: What would I owe while being under Medica's insurance umbrella (April 1 onward), which offered superior coverage, yet would include the entirety of my stem-cell transplant at Mayo Clinic. This had the potential to be a very large figure.
In Monday's mail I got a bill from St Luke's for $111.18. I had no idea what services it covered, or for what period of time, so I called to ask. It turned out to be the total of what I owed for doctor services for the first quarter of 2016—everything else was being picked up by Aetna. Whoopee, that was good news. I had been girding loins for a bill that was at least four figures.
While it was curious to me (as a retired administrator) that St Luke's accounts receivable was handling the doctor bills so differently than the hospital bills, I didn't ask why. I was just happy to get such a friendly answer to my first question.
Next, I called Medica to get a handle on what I might expect in the way bills for April 1 forward. Here the news was terrific: in all likelihood, everything would be covered by Medica! Now that's what I'm talking about!
Once I had committed to moving to Duluth from North Carolina at the end of March I had to switch insurance policies (it turns out that under federal guidelines one's options for supplemental insurance under Medicare are specific to the county in which you reside and the policy I had with Aetna—suitable for Orange County in NC but not St Louis County in MN—was no longer an option). With the help of a local broker, I chose to go with Medica's best policy: Prime Solution. While I contribute a small co-pay on medications, and my policy doesn't help with housing (such as staying at Transplant House for 5+ weeks in Rochester, which ran into four figures), it pretty well covers everything else, with no deductible.
That was a great stone lifted from my shoulders (and a wonderful answer to my third question). While I don't yet have the answer to my second question, my exposure there is fairly limited (only two weeks of outpatient services), so I expect to be able to weather it.
Of course, I'm still paying hefty monthly premiums for both Medicare and Medica, I had bills from my time at the rehab unit of Ecumen Lakeshore in February, and I've still got cancer (which translates to more treatments and doctor visits ahead), yet it now looks like I have a decent chance to end the year with a bit of money still in my checking account—a possibility that did not at all seem likely a month ago. In that regard it was huge that I've received over $8000 in donations to help with my health care costs in response to the appeal I posted in this blog July 7 (My Health and My Finances). Almost 30 people (both individuals and couples) generously responded and it's made all the difference. Thank you one and all!
2. Maskless in Duluth
While the news about my financial exposure would have been enough to have made Monday a stellar day, it got better. I had taken a blood test Friday and Dr Alkaied's nurse (Alyssa) called Monday to let me know that everything was in the normal range. That meant I could stand down on mineral supplements (such as magnesium and potassium) and my neutrophils (disease fighting white blood cells) were now strong enough that I no longer needed to wear a mask in public. Hurray!
Every day, things are getting better.
Tuesday, August 30, 2016
Monday, Monday, so good to me
Saturday, August 27, 2016
I've just read Tom Brokaw's A Lucky Life Interrupted. Published last year, it's a breezy, personal account of his journey with multiple myeloma, the same disease that I have, contracted two years ahead of me. While he doesn't have the exact same version of myeloma that I do, it's close enough. Especially his coping with chronic back pain amidst all the chemotherapy.
One the things that helps most in navigating a life-threatening illness is stories from others on the same journey, and Brokaw's offering was terrific in that aspect. While upbeat, it is not sugar-coated.
What I'm finding—which parallels what Brokaw reports—is that coping with cancer is another life experience, a chance to find out powerful things about yourself, even though you didn't sign up for the exploration. You can fight it, lament it, or roll with it.
o Life gets stripped down to essentials. If you have limited time and/or energy, how will you budget what you have? This question suddenly looms large. While it may always have been there in some capacity, now it is front and center.
o Beyond "why me?" there are richer existential veins to mine. Tom, on the advice of a close friend, was able to shift it subtly to "why not me?" which I adore. There is a lot there. First of all, you need to move beyond self-pity, and make peace with your mortality (which is surely coming, no matter how fast we run). One's life is changed by serious illness (you have to make adjustments to diet and concessions to the limitations of a body now more frail), but you can still be you. All you have to do is sort out what that is, and how to pursue it within your new constraints.
I fully intend to be as vital as possible, for as long as possible. While that's not a change of plans, it is now a concrete plan, not a vague ideal.
In writing the book, Tom ultimately made the choice to share his journey publicly. I have made a similar choice, and it helped me to have this peek behind his private curtain. Not because I am suddenly so wise or heroic, but simply because sharing our stories is the oldest coin in human relations, and, ironically, you don't grow richer by hoarding—only by spending.
o I have written previously about how cancer can become a potential bridge to others who feel isolated by health challenges—something that I sense will, on occasion, be an asset for me as a professional facilitator. But there's more.
For example, I'm finding out a lot about my tolerance for pain, and my motivation to be physically functional. It's one thing to give up rock climbing (which I hardly ever did); it's more urgent making sure I can bathe myself and recapture my agility and stamina in the kitchen—while I can accept a wide range of limitations on my choices, I want to be minimally reliant on others (Susan especially) to meet basic needs. Apropos this dance, it was helpful to read what Brokaw wrote about his debilitating back pain and how difficult it was for him to accept limitations on what had been a freewheeling lifestyle.
While I don't aspire to complete independence (does anyone?), I do want a balance of give and take with Susan, where our relationship can settle into a rhythm that is a more partner:partner than nurse:patient. That's my goal.
o Cancer, unexpectedly, gives me a forum to speak about wrestling with difficult choices, about death, about what it means to live a life well. I like having a chance at that bully pulpit. Like Tom, I'll be sharing about a life that has been full of magic moments, yet not without bumps and missteps along the way.
Wednesday, August 24, 2016
I recently received an engaging email from a close friend who has been going through her own journey with cancer, parallel with mine. Though we have different diseases with different treatments and prospects, it's nonetheless been a time for deep reflection for both of us.
Just catching up on your blog and Caring Bridge after a challenging week. I'm so glad to hear things are progressing in good directions and that you are home! "Cancer survivor" is a label I have not yet become comfortable with myself, partly, I think, because of the uncertainty; partly because it seems strange to add badges of pride when I'm trying to learn to be more humble; and partly because "cancer treatment survivor" feels more apt in my case (and yours has been and will be much more grueling); but in any case may it be an accurate descriptor of you (and me) for many, many years to come.
This is a provocative topic for me, and I think there are a number of threads swirling around it, comprising the yarn ball of my thoughts:
o It helps me to hold a positive image of my future that is not about whitewashing. I need to simultaneously own that I have been very sick and that a positive attitude going forward is an essential part of my healing—that one attains or sustains “health" by working on many fronts, attitude being one of them.
On the one hand, embracing the label of "cancer survivor" may be seen as whistling past the cemetery (acting braver than I feel). On the other, I think it's good for me to not forget that I'll have cancer the rest of my life—however long that is. Axiomatically, I'll be a survivor until I'm not. Meanwhile, all actions I take from now forward are those of someone who has cancer and has been working diligently to not have my blood pressure spike when I think about it; to find ways to be vital and healthy anyway.
o I need to make peace with cancer in my body. I don’t want to ignore it and I don’t want to be obsessed with it. I want to accept it as part of the package of who Laird is today. I’m a person who is not done living and still has a lot to contribute in the world. Today though, unlike two years ago, I am a person with cancer and I need to make choices going forward that keep that in perspective. I do not know how much time I have left (do any of us?) and want to choose consciously how I apportion my time. It probably means more time with friends and loved ones, and less as a process professional, and that’s OK. (I think of it as a late-in-life course correction.) The key is wanting to be more conscious and the label helps me maintain vigilance about my choices.
o As a professional facilitator, I am always looking for additional ways to bridge to people, especially outliers. I’ve come to understand that my history of good health has, ironically, been a barrier with some folks (how could anyone who’s been that blessed possibly understand what I’m going through?) even as it’s helped me maintain a heroic work schedule (until I collapsed in December). Thus, being a cancer survivor gives me another point of engagement, that I fully intend to use where applicable.
o So much of what we identify as hard in life has to do with fear, and I’ve learned that by shining the light in dark corners fear is diminished. Because I want to make it easier to talk about fear, it’s incumbent upon me to take the first step. Thus, my cancer becomes an opportunity, and the label is an invitation.
o You are right, I think, to point out that it's more accurate to say that we've survived our treatments than that we've survived our cancers, the remnants of which remain in our systems with uncertain futures. That said, it is not for me to tell another whether it is a label they should wear.
Long ago I made the choice to be a public person. Not only does that mean that I ply my crafts in the public eye (as a public speaker, as a professional facilitator, as a writer), it also means that I have committed to live my life with a high degree of transparency and a willingness to explain how I got to hold the positions and viewpoints that I do. (If you're not interested, don't read my blog; no one's arm is being twisted.)
It means that I'm willing to share details about my personal life that many others consider private—not because I'm the arbiter of where the boundary should be or because I'm an emotional voyeur or a drama queen, but because I am often in the position of asking others to be vulnerable with me and I need to walk my talk.
Right now, cancer is a big deal in my life. While it's not going to stop me going forward and it may not remain the first article above the fold in the biweekly publication of What's Going on with Laird, it's a compelling complication and an entrée to the Pandora's Box of what remains of my life. Make no mistake about it; I am going to open the lid. And I'm going to write about what I find—warts, spiritual revelations, clay feet, and all.
I can't not do it.
Monday, August 22, 2016
Saturday I had a phone date with a prospective client—a community that was experiencing increased tensions and wasn't sure where to turn. Interpersonal dynamics were deteriorating and the folks calling me on behalf of the community were worried that they were going to soon start losing people—good people—unless things got turned around soon. Could I help?
Boy, did that energize me!
The group does not currently train new members in their consensus decision-making process and doesn't have any agreements about how to handle conflict—two deficiencies that go a long way toward explaining why the wheels are just about to fall off the wagon. Yet, the cupboard wasn't bare either. When I asked how many people might come to a special plenary aimed at focusing on interpersonal tensions, I was told over 80 percent, which would be a terrific turnout. Further, the group started seven years ago, so they have considerable common history together, most of which is positive. That is, they have something worth saving.
While there are a number of things going on, a key one is understanding better how to work through differences. Inadvertently, the group had fallen into an unproductive groove where dissatisfied minorities were not voicing their concerns early enough in the process, with the result that the minorities were feeling steamrollered (where is it safe to bring up differences?) and the rest of the group was feeling monkey-wrenched (why are major concerns not surfacing until the last moment?). Yuck. Each side believes they are acting in the group's best interests but that is not being recognized by folks on the other side of the aisle.
The good news is that this can be turned around. While the group is (understandably) nervous about how to work constructively with strong feelings and is not confident they have the internal skill or permission to facilitate those moments, that can be learned. If you attempt to do problem solving without having first addressed major distress, you have a train wreck. Yet if you are too scared to deal with the strong feelings you feel trapped. In these circumstances it's easy to see why the group may be leaking a lot of oil, and coming away from meetings feeling drained.
Thursday, August 18, 2016
Today I wrap up in Rochester. I'll have my exit interview with the Transplant Team this morning, followed by a conversation with Dr Buadi (freshly back from Ghana), who will go over my status and give me final instructions for resuming my normal life, or as close as I can come to it at this time. It's a conversation I'm keenly looking forward to.
As it happens, our return to Duluth coincides exactly with the arrival of the tall ships (a flotilla of at least eight classic ships powered by sail) in Duluth, triggering a celebration that will extend through the weekend and is expected to attract 300,000 tourists. Ugh.
While traffic arteries may be clogged, that will not undermine my good mood. Regardless of what's happening on the water, I'll be coming home to complete my recovery and to start my new life as a cancer survivor. I'm ready.
Gradually, I've been able to overcome residual aftereffects of my treatment: persistent nausea, lingering diarrhea, and a balky appetite. Each day I've gotten stronger. It's been great having Jo join the care team from Las Vegas for this final push, giving Susan a break from cooking and gaining her complimentary help in managing the obscure pop culture clues in the daily New York Times crossword puzzles. (While Jo didn't think she'd be much help, it's turned that where she's strong is exactly where Susan and I falter.)
Last evening we ate dinner with Randy and Jerry, a couple from Grand Marais (on the North Shore) who have been in Rochester since February as Jerry battles the ravagement of Agent Orange, which he was exposed to in Vietnam 40 years ago. Susan became friends with Randy 20 years ago when they were both working in the art gallery world, and the friendship has continued. Jerry is at Mayo's with the blessing of the Veterans Administration (who can't do as much for him a this point as Mayo's can), and it's a tough road for him, facing infusion therapy every day with no end in sight.
It was delightful to be in the presence of their grace and hopeful attitude. Very uplifting. If possible, Susan and I will try to manufacture a reason to visit Randy and Jerry in their second home in Truth or Consequences NM (quite the contrast with Grand Marais). I had once visited the River Bend spa and hot springs in town (right on the banks of the Rio Grande River), and would love to do so again with Susan. Perhaps next April, when the calendar says it's spring but the outdoor gods in Duluth laugh at such folly.
Today I stand with tall hopes and am ready to sail into my post-treatment future.
Sunday, August 14, 2016
It's been nearly two weeks since I last posted. In the intervening fortnight I've been through the Valley of Despond, the Desert of no White Blood Cells, and have been spit out like a watermelon seed thrumming with Bone Marrow Vibrancy.
After about 10 days of enervation, bordering constantly on nausea, I was finally able to get traction on my white blood cell count last Wed—on my third day of being hospitalized to stabilize my reactions to anti-nausea medications. In my first 66 years I had not encountered an allergic reaction to medication. Since February, however, I've stumbled into four: elotuzumab (a chemo drug used to treat multiple myloma), compazine (an anti-nausea option), scopolamine (another anti-nausea), and benadryl (an antihistamine given as a prelude to stronger drugs. Who knew?
Anyway, it took about three days in the hospital to sort out that I was susceptible to the last three on the above list, and I recall sitting in my darkened room on the last night (the wee hours of Wed morning), when Scott, my night nurse, shared with me the good news: my white blood count had come in strong: after three successive days of readings inching forward (0.1, 0.2, and 0.3), I'd caught a booster rocket: 0.7. I knew then that I'd turned the corner on engraftment—the point at which it's clear that my stem cells have successfully recolonized my bone marrow and were busily replacing my depleted blood cells.
It's weird to go from several days of a mind set geared toward survival (riding out the ravages of the mega-dose of melphalan that I took July 27) to suddenly having the sun come out from behind the clouds and the nursing staff natter about scheduling my exit interview. Wha' happened?
After finally shooting through the rapids of my stem cell transplant, suddenly I was in shoal water, looking for the quiet bay where we'd parked the car: it was time to go home.
In this case, our stay in Rochester will be extended a couple days to accommodate the return of Dr Buadi, the hematologist who is overseeing my transplant. He will be returning from his annual pilgrimage to his native Ghana this coming Wed, and we very much would like his take on my status before heading home. We would like his read on how my numbers look and what it portends for my cancer.
It's still sinking in that I'm now on the other side of my transplant; that I've accomplished what I came to Mayo's to do and the test now is no longer my ability to cope well with chemotherapy, but to turn all that good work into cancer in remission. My work now is to return with Susan to Duluth and live a full and joyous life. Wow.
There are many, many friends and relatives who have been following my journey closely, and wishing me well along the way. For months they have been the wind at my back, gently guiding me toward this moment, and steadying my gunwhales as the current got choppy. I am humbled by all the good energy that's been directed my way. Thank you one and all.
Monday, August 1, 2016
It's a new month and I'm entering the final stretch of my stem call transplant: recovery.
Yesterday I started feeling weaker—as predicted—and I was out of breath after walking downtown (a bit over a mile round trip) at a leisurely pace to collect a Sunday paper. Because I knew that was likely to happen it didn't freak me out, and the Mayo Care Team was not alarmed. In fact, my stamina is likely to decrease further before I hit bottom (around Tuesday or Wed) and start to rebound. So I'm preparing myself for All Ahead Slow on my engine setting his week.
I completed the crossword puzzle with Susan and Ceilee yesterday, and not much else. Though Susan had only left Rochester last Monday evening for a break from every day duty as my primary care giver, she couldn't resist sneaking down from Duluth for a 26-hour appearance on the weekend, and I'm glad she didn't. She has come to mean so much to me that my heart was filled with joy immediately as she arrived early yesterday afternoon. Yippee!
The three of us (with Ceilee) celebrated my extended appetite and energy Saturday evening (before today's diminishment) be eating at an Irish pub called Whistle Binkie's (amazingly enough, there are two locations in town), that featured Scotch eggs and Irish Stew. While the food was average, the ambiance was delightful and we laughed a lot—and that was good enough for us.
As July segued into August, I was up in the night a lot, somewhat disoriented, but never nauseous. It was kinda surreal and floaty, but I'd rather have just slept right through it. Today, at blood draw the nurse had trouble getting blood to flow from my Hickman port which meant fooling around with it at Mayo. The point of having a port installed is to facilitate blood draws, not complicate them, but sometimes it doesn't work that way. Oh well.
Annie arrived today from Floyd VA, and it was great adding her smiling face to the room. She'll be here for a week, overlapping with Ceilee for the next two days. Tonight Ceilee grilled pork chops, corn on the cob, brussels sprouts, and jalapeño poppers. Olé! I only ate about half of mine but that was plenty of calories for this recovering boy.
Meanwhile, Ceilee has been mildly inveigling Annie and I to get involved in Pokémon Go. Apparently he's been able to collect and capture goodies on his smart phone just traveling back and forth from Transplant House to Mayo's on my mundane daily transits. Those little darlin's are everywhere, and it just looked like sidewalks to me. While it's highly unlikely I'll get sucked up in the rush, it doesn't mar my vicarious enjoyment on Ceilee's behalf. He could be doing worse things, such as trying to make sense of Donald Trump's recent attack on a gold medal winner.
For me it's mostly a quiet day of recuperation and trying to regain strength. I am incredibly thankful to be surrounded by loved ones at this time.