Feed aggregator

Gearing Up for Chemo

Laird's Blog -

It's the weekend. For Susan and I that means a couple day off—as in no medical appointments—before action resumes Monday, when I get a central port placed high in my torso (to ease blood exchange for the chemotherapy to come) and a sample of belly fat taken to test for amyloids (see more about this new wrinkle below). 

Good news for ducks and flower beds. It's raining steadily as I type and that's supposed to keep up all day. That makes it a good day to not walk to the clinic, and a good day to compose a blog. Susan and I had been hoping to stroll over to the farmers market this morning, but we gave up on that idea once the skies opened up.

We saw Dr Buadi yesterday. He's the hematologist overseeing my stem-cell transplant. All systems are go for my receiving the chemotherapy Wednesday (melphalan), to be followed Friday by the reintroduction of my stem cells. In the parlance of my Bone Marrow Transplant (BMT) Team, next Friday will be dubbed Day Zero. While Susan and I had been hoping this timetable would not have been so stretched out (six days between the completion of stem cell collection and the chemo treatment), we are grateful for the down time together this weekend. 

My sister Alison is slated to arrive late Monday morning (July 25) to tag in as my primary caregiver, allowing Susan to drive back to Duluth that afternoon. She'll have 10 days or so at home to catch up on work at church, to get a break from Mayo coffee, and to convince our dog, Lucyie that she's still loved. She'll then return in time to take back the caregiver baton from my dear friend, Annie, who will be in charge of Laird duty Aug 1-8.

From Day Zero onward my routine will be the same every day. There will be a visit to the clinic so that the BMT Team can get eyes on me to make sure everything is proceeding on course. This is important because I will be immune-suppressed after taking the melphalan, and therefore susceptible to catching random germs and diseases that a normal body could shrug off easily. If there's a complication, my BMT Team wants to be right on top of it.

When I first tried to imagine what the transplant would be like, I pictured a challenge similar to what I went through in Feb and March, recovering from getting knocked flat on my ass by both severe back pain and my body's response to the early cancer treatment. Last winter I wrestled with being bed ridden and learning to walk again. After talking with Elsie Martin though, a friend who went through a stem cell transplant 2-1/2 years ago, also for multiple myeloma (MM), she reported how important it was to her to have the goal of walking at least one flight of stairs every day. I thought, huh? I didn't attempt stairs until returning home after almost seven weeks of hospital and rehab therapy last winter.
But this will be a different deal. I will be attempting to not lose the ground that I have carefully gained since Feb, and that means I need to keep moving. To be sure, it needn't be fast; I just need to keep using my legs, because that will get me home faster. Conveniently, I have one flight of stairs separating my room at Transplant House from the kitchen/dining room, so I may adopt the same post-transplant recovery goal as Elsie did. If I am able to walk to my daily appointments at Mayo (as I have so far), so much the better.

In any event, I'm looking forward to moving on to this next and final stage of the transplant process (in the spirit of, you can't get done until you get started). I have a comfortable setting, a terrific care team, and top-notch medical assistance. Let's get 'er done!
• • •Now back to the amyloids. There was modest (inconclusive) evidence that I may have an incipient problem moving me in the direction of amyloidosis. This is a relatively rare, but serious disease that involves the accumulation of unwanted protein fragments (called fibrils) that the body has trouble disposing of. These fibrils can aggregate and interfere with normal body functions. While this disease can present in a variety of forms, one version compromises the kidneys and heart.

With that possibility in mind (because I need my heart and kidneys to be hitting on all cylinders as I continue my battle with MM), Buadi ordered tests to take a closer look for amyloids. Because they are rare and show up in many forms, they are difficult to diagnose. Nonetheless, it is a measure of my doctor's thoroughness that he's checking anyway.

On the good side, my kidney functions have steadily steadily improved from their dangerous low point when my cancer was first discovered in late January (I was only functioning on 20% capacity at that time and was close to renal failure), and that kind of improvement is contraindicated in the presence of amyloids. So the early evidence is mixed, and I think the best way to see this is my doctor is being prudent. While I don't want there to be any more complications, I want my doctors to be looking in case there are. Who would want it any other way?
• • •It looks like an all-day soaker today in Rochester—a good day to read or go to a movie as I keep building strength for the weeks ahead.

Getting Turned Inside Out

Laird's Blog -

I've now completed three days of apheresis, having collected 4.4 million stem cells on my way to six. (Although the transplant will use only three million, my doctor wants double that amount in hand in case a second transplant is indicated.) While I'm getting tired of being a pin cushion (think lots of IV sticks and belly pokes) the end is in sight. With luck, I'll inch across the finish line tomorrow.

I awoke today to scary news. My brother-in-law Norm suffered a stroke yesterday, and his wife (my sister Tracey) went to bed last night with Norm in the hospital, not being able to talk. We got a brief note from her first thing in the morning apprising us of the situation. Fortunately, Norm recovered his speech later today. While they're still testing, it appears he'll have a full or nearly full recovery. Whew. It's sobering to be reminded that serious health challenges can strike any of us at any time.

On a positive note, there is a riot of flowers in bloom in downtown Rochester (after all, it's mid-July) and it's a multicolored joy to walk the pathways that Susan and I traverse between Mayo Clinic and Transplant House each day. Further, Rochester is an exceptionally clean and friendly town, and from the eighth floor of the Eisenberg Building (where apheresis is conducted) we have a nice panoramic view of the north side of the city in full green raiment. Today we got a bonus as storm clouds rolled through all morning. Though it didn't rain, the view was spectacular.

Looking back over my first 10 days in town, it's been wonderful having so much time with Susan (who is taking time off from her regular duties at St Paul's Episcopal Church to be my primary support person). Starting next Monday Susan gets relief as Alison, Ceilee, and Annie takes turns covering the next fortnight. While I'm anticipating good connections with those loved ones as well, it's been precious sharing with Susan all of my fears and joys as I surrender to the fast water of the transplant process, trusting the sturdiness of our intimate canoe to see us safely through. It is, after all, a big deal. Our future is at stake, and I hold dearly the hope of being able to enjoy substantial time together in good health.• • •Mayo Clinic thoughtfully offers apheresis patients access to movies while they go through the five-hour collection sessions. Monday we watched The Intern (a lovely comedy with Robert De Niro and Anne Hathaway). Being an older guy myself it was touching watching how De Niro portrayed a 70-year-old widower who was not yet done with making a contribution in the world. I admired his patience working in a company run by people who were a generation younger than himself—available to give advice if asked, but never pushing it. Without rancor or ego, he gracefully accepted the role of office intern after retiring from a successful career as a business vice president. He simply wanted to be back in the action and knew how to be a team player.

The action hinges off a personal crisis for the company founder and CEO, Jules Ostin (Anne Hathaway). She loves her company (an online fashion start-up) but the long hours take her away from her daughter and stay-at-home husband. The neglected husband has an affair, Jules finds out, and feels she has to choose between a job she loves and the family she loves. In the end, hubby repents and Jules gets to keep both, but left unexplored is how that adds up. Where are the extra hours needed to do both well going to come from? The movie got right up to the crucial question and then ducked.

Tuesday we saw Spectre (the latest James Bond thriller), and today we caught Star Wars: The Force Awakens (episode VII). Sandwiched between these two escapist thrillers (where once again, wouldn't you know it, good triumphed over you know what at the last possible moment), we enjoyed Inside Out, a delightful Pixar's release from last year. (Does Pixar ever produce a bad movie?) While I'm not sure that catching up on movies you missed first run is an even trade for having cancer, it's at least a sliver of a silver lining.

The best of the bunch was the animated film, Inside Out, which I had never heard of but Susan knew to be a winner. The concept is what's happening in the consciousness of an 11-year-old named Riley as she tries to integrate her five primal feelings: Joy, Sadness, Fear, Anger, and Disgust (think of a team of five trying to cooperatively resolve how Riley should respond in any given moment, with Joy as the team leader, but not necessarily always in control—it was hilariously insightful). 

The film's dramatic crisis occurs when Riley (an only child) and parents leave their happy home in Minnesota to explore a new life together in San Francisco. Riley stumbles out of the blocks in her first day at her new school, and this movie brought me to tears as Joy learns to make friends with Sadness, helping Riley reunite with her parents—rather than trying to keep Sadness confined to a small circle where she doesn't touch much.

What a delightful way to introduce the concept of emotional health—something we all struggle with, not just 11-year-olds. While Riley's brain worked overtime to make sense of her conflicted feelings toward her parents (why did they take her away from the Land of 10,000 Lakes, where everything was going so well?), it triggered sympathetic tears in me about my complicated relationship with my father, where I struggled mightily to understand my emotional responses (and his).

Anyway, that's what I noticed during cancer treatment today. What's it going to be like when the hard part comes?

Prime Time in Rochester

Laird's Blog -

Today I completed four rounds of priming, which chemically encourages my bone marrow to release stem cells into the bloodstream. Tomorrow the harvesting begins. Each morning—for as many as are needed to gather six million stem cells—I'll start my day with five hours of apheresis, where my blood (through intravenous ports) will be circulated through a machine that is clever enough to extract stem cells from everything else.

It's a pretty straight forward operation. After getting set up, I just relax and let the machine do its job. As I went through several rounds of this in Duluth in order to shed my excess plasma cells, I know the drill. I'll be sure to bring a book.

The staff estimates that it will take 2-4 rounds of apheresis to get enough stem cells, after which I should be all set to begin chemotherapy—which starts with the injection of a poison to kill off everything in my bone marrow.

Meanwhile, Susan and I have been settling into a routine during our first week at Transplant House, located just four blocks from the Mayo Clinic. At least at the outset of my visit here I am strong enough to walk to and fro between the two. It's a bit over half a mile one way on fairly level terrain and terrific exercise for my legs and lungs. As a bonus, I've noticed that my peripheral neuropathy (numbness and tingling in my hands and feet) has diminished since my walking has increased. Yay! Because I'm expecting my overall energy to nosedive after I receive the chemo, it's important to keep building strength now to help sustain it as long as I possibly can (I figure it's easier to retain than to recover).

One of the conundrums that Susan and I face is anticipating my food interests after I take the chemo. We've been warned that my sense of taste will be wonky after chemo and that I'm likely to suffer loss of appetite. That's unfortunate because I need to keep eating to maintain strength. My weight is down to 154 as of this morning (from a high of 206 back in October 2014, when I first experienced lower back pain) and the transplant nurses have told us that it's common for stem cell recipients to lose 10-15 lbs over the course of the protocol—an additional droppage that I am loath to shed.

Yesterday we went to a local farmer's market and bought fresh veggies, enough to make a large pot of soup, in anticipation that I'll like soup during recovery. I sure hope I do. Today we went to a grocery store and picked up more ingredients for the what-will-Laird-eat-after-chemotherapy-has-wiped-out-his-taste-buds-and-appetite sweepstakes, which we expect to begin playing sometime next week.

It was great being able to take advantage of the season (mid-July, with lots of stuff available fresh and local), the weather (lower 70s), and my burgeoning stamina to add a two-mile detour onto our walk home after my daily dose of neupogen. Susan and I then had fun cutting up in the kitchen, adding peas, corn, potatoes, carrots, onions, green beans, Great Northerns, and a couple of diced chicken breasts to a base jump-started with some garlic salt, a can of crushed tomatoes, and a box of chicken stock. Yum.

I'm anticipating that the trickiest part of the post-chemo period will be adjusting to the hygiene protocols while I'm immune compromised. Lots of hand washing, teeth cleaning 4x daily (using a sponge-like thing called a "toothette" because a regular toothbrush may cause bleeding), wearing a mask when out in public, and generally being what Elmer Fudd would describe as "wery, wery cautious."

While I'll probably be plenty tired of it by the time I'm past the danger zone (typically 2-3 weeks), there is no way around it; I simply have to go through it.

Me and Fellini

Laird's Blog -

This is my 1000th blog. Wow. I figure it's an opportune moment to step back and reflect a bit on what's transpired since I launched this site in December 2007.  8-1/2 years. Me and Fellini.
 
Frederico Fellini released his autobiographical masterpiece, 8-1/2, in 1963 (I was just graduating from eighth grade), featuring a movie director (played by Marcello Mastroianni) who takes a step back from a busy, harried life to slow things down and consider what he's accomplished and where he wants to go. This movie was notorious for its examination of intimate details in the director's life. Though it would be considered tame today, it was risque at the time. Now why would that remind me of my blog... or for that matter, my life? Hah! Art foretells life.

I started this blog to help drive traffic to the FIC website through the more contemporary venue of social media. While you'll never catch me tweeting, I at least have this one oar in modern waters. While assisting the Fellowship still motivates me, that alone would not have been sufficient to have sustained my interest. I reached this milestone because my blog has also served as a place to lay out my thinking about cooperative group dynamics—strung out like so many pearls, released one monograph at a time. Finally, I personally benefit from the discipline of writing, which requires me to be more precise and complete in my thinking. I write better reports, for example, because I write regularly for my blog. (Is one ever through learning how to be more to the point?)

This auspicious date comes on the cusp of my entering a new and crucial phase in my cancer chemo-choreograhy. (I came within an ace of writing "battle" with cancer, but I'm uneasy with the martial metaphor and believe I'll ultimately have greater success learning to live with cancer, rather than attempting to "vanquish" it.) In fact, I'm polishing today's post from my second floor room at the Gift of Life Transplant House in Rochester, where Susan and I landed Monday evening for the start of my stem-cell transplant procedure at Mayo Clinic.

It's interesting to have manifested cancer just as I stepped out of FIC administrative work. I reckon it's true that nature abhors a vacuum. As a cancer survivor (since January) I now have one more powerful way to bridge to people who feel isolated, which is a set of tools you never have too many of as a group dynamics technician. I've found that being able to bridge to folks who feel isolated is an unsubstitutable skill, so it's great having another point of entrée.

After two days in Rochester, I've been poked and prodded more than a side of US Grade A beef. This afternoon I met with Dr Buadi, who will oversee the transplant procedure. He gave the green light to proceed based on my baseline test results, and I received my first shot of Neupogen, a stimulant that will cause my bone marrow to release stem cells into the bloodstream, from which they can be harvested starting Monday.

Stem cell collection is accomplished through a process called apheresis. They'll draw my blood out of an intravenous port in one arm, cycle it through a machine that separates plasma from blood cells, and then return the residue into a matching intravenous port in my other arm. A single apheresis session takes about five hours and I'll do 2-4 of them to gather enough stem cells: about 6 million.

After that I'll be injected with a poison that will kill everything in my bone marrow—good cells and bad. Two days following that, they'll reintroduce my healthy stem cells to start the recolonization of my bone marrow.

As you might imagine, my main job throughout this is to maintain a positive attitude and to recover energy, motivation, and appetite. I'll be immuno compromised right after the poison injection, will lose my hair (such as I have any), and will feel like shit. But health is on the other shore and I'm highly motivated to cross this river.
For the duration of my time in Rochester (maybe six weeks altogether) I have a terrific caregiving team lined up. In addition to Susan (my main primary support), I'll have Alison (my youngest sister), Ceilee (my son), Annie (my ex-partner and Ceilee's mother), and Jo (my daughter) all doing shifts to give Susan a break. As if that weren't enough, there are even more who volunteered for shifts, but I didn't have more spaces on my dance card! 

It's an incredibly good feeling to know that so many folks are rooting for my recovery, and are willing to suspend their regular life long enough to lend a hand. The power of being touched by this kind of love is palpable, and it appears that one of my main life lessons these days is learning to place relationships more in the center of my life.

What does that mean? Let me share the story of two unplanned visits that created delightful bookends for me last week. On Sunday afternoon River Oneida came by for a couple hours, taking advantage of being in town to visit his son's family (most of which are in Duluth) and knowing that I was going through a major health crisis, he decided to see me as well. River lives at Twin Oaks, an income-sharing community in central VA that will be celebrating its 50 birthday next June (which is a far more significant accomplishment than my posting 1000 blog entries). I have been visiting Twin Oaks off and on since 1980, and have known River for decades as a fellow traveler in the arcane word of income sharing. Though I had not seen him in 4+ years we had no trouble whatsoever picking right up with the threads of our lives, as if it had only been last week. Sharing a community bond with someone creates that kind of intimacy.

Amazingly, this was followed by a surprise visit from Jim Crowfoot & Ruth Carey, two long-time friends who live at Sunward Village, a cohousing community in Ann Arbor MI. They were in state to attend the  Quaker annual meeting (held this year in St Joseph, close to St Cloud). On whim, after the meeting ended they decide they wanted to see Lake Superior and at the same time to see me before I headed to Mayo. Saturday they made both wishes come true wish and we had a lovely visit, replete with fresh blueberry pie and ice cream. (Does it ever get better than good friends and fruit pie a la mode?)

I love that I'm moving into a lifestyle where these kinds of accidental visits can find ready oxygen.

Today we arrived at Mayo for our first appointment mid-morning and settled into the waiting room. When the escort nurse collected us and took us to an examination room, she remarked , "Welcome back." I looked at her quizzically and she replied, "I recognized your devil bag from March." Holy cow! She had remembered my canvas tote bag from four months ago. Talk about putting patients at ease with a personal touch. I was gobsmacked. 
Later, after the doctor's assistant went over the adjustments to my medication list, we asked if there was a pharmacy she'd recommend. We were told there was one in the Mayo complex. When we asked where, she began her explanation with, "You know where the Starbuck's is, right?" You know you're in America when even the directions at Mayo Clinic start by referencing Starbuck's as a universally known landmark. What a (caffeinated) country!

For the next six weeks (or so) I'll be bivouacked at:
Gift of Life Transplant House
room 238
724 2nd St SW
Rochester MN 55902

Who knows where I'll be when it's time for blog #2000?

Residents of Anchorage's first cohousing neighborhood prepare for move-in day - KTVA.com - Anchorage, Alaska

Cohousing News from Google -


KTVA.com - Anchorage, Alaska

Residents of Anchorage's first cohousing neighborhood prepare for move-in day
KTVA.com - Anchorage, Alaska
Ravens' Roost Cohousing is located near Abbott Road and Lake Otis Parkway. Jeff Heuseveldt gave KTVA a tour of his future condo and said cohousing is essentially a neighborhood built in a way that encourages residents to get to know each other.

Healthy Uses of Power and Authority

Laird's Blog -

If power is the ability to get others to do something, or to agree to something, how does the equation  change if one of the two people has authority the other doesn't have?
Let's say Sandy has been authorized to make decisions about the group's anniversary party. Taylor is also a member of the group and has ideas about a new interactive game that might increase participation (which has been waning in recent years). Now let's suppose that Sandy does not share Taylor's excitement about the new game because it will take too long, making dinner start too late for parents with young kids.

Sandy appreciates that Taylor is trying to enhance participation, but Sandy is also sensitive to complaints from the parents of young kids about how few group activities are designed to work well for their family schedules. What to do? Let's suppose Taylor is a new member to the group and has been encouraged to get involved. This offering of the new game at anniversary is Taylor's first attempt to do something for the group and Taylor is baffled by Sandy's cool reception. There is a risk that if this exchange goes poorly that Taylor will back off and become cynical about the group's supposed commitment to inclusivity.

To be clear, Sandy has the authority make the call without getting buy-in from Taylor. Still, Sandy wants to be careful about proceeding in a way that is not disrespectful to the well-intended newcomer. Yet neither does Sandy want to get bogged down negotiating with Taylor over an idea that's a non-starter. After all, what's the point of having the authority to make the call unless you exercise it?

At what point is Sandy being arbitrary? At what point is Sandy being held hostage to unreasonable expectations?

By virtue of delegated authority, Sandy is not obliged to get approval from Taylor. Is it enough that Sandy makes a good faith effort to hear Taylor and explain why there will be no new games played at anniversary? What level of response from Sandy constitutes due diligence? 

These are nuanced questions, and I don't believe there is one right answer. That said, it's worthwhile to dwell here a bit to describe the lay of the land and to offer some suggestions about how to proceed.

o  I believe the hardest part of this dynamic is that people do not tend to respond openly to others raising questions about how cleanly they've used power. Thus, the biggest challenge tends to be creating a culture in which these uncertainties can be explored without anyone going ballistic.

o  One thing that will help is having a conversation about what's wanted in the situation I've described with Sandy and Taylor. What can Taylor expect in the way of consideration and an explanation from Sandy? What latitude does Sandy have to go in another direction if unpersuaded by Sandy's suggestion?

o  It might be interesting to ask other members of the group who have had experience filling roles of authority for the group what they would like the standard of responsiveness to be.

o  Caution: One known pitfall here is sloppy delegation. Just imagine how much more complicated it can get when the hand-off to the person(s) in authority has not been well defined. Ugh. When people have to guess about the limits of authority, can misunderstandings be far behind?  

o  There's a difference between being unhappy with how someone used their authority (perhaps you feel they exceeded their mandate) and being displeased with their judgment (even though they had the right). Be sure not to conflate the two. The former is a process complaint; the latter is a disagreement of substance.

While the advice above does not constitute foolproof protection against falling into the pit, it'll help.

People Looking For Community Are Drawn To Colorado Cohousing - Colorado Public Radio

Cohousing News from Google -


Colorado Public Radio

People Looking For Community Are Drawn To Colorado Cohousing
Colorado Public Radio
According to the Cohousing Association of The United States, there are 162 cohousing communities in the U.S., including 20 established or forming in Colorado. That makes the state home to 8 percent of all cohousing communities nationwide. Of those 20 ...

Cambridge, Belmont residents team up to open first senior cohousing - Wicked Local Cambridge

Cohousing News from Google -


Cambridge, Belmont residents team up to open first senior cohousing
Wicked Local Cambridge
Thatcher, along with her husband Mayhew Seavey, has teamed up with friends in Arlington and Cambridge to form the Middlesex Senior Cohousing Initiative. The group held an introductory meeting last month, which drew 80 people, 60 of whom signed up ...

My Health and My Finances

Laird's Blog -

This is an appeal for financial support. It has not been easy for me to write this, but it looks highly likely that my medical expenses in battling cancer will exceed my savings and I need help. 

I made the decision back in my 20s that by choosing to live in an income-sharing community (when I started Sandhill in 1974) I would be devoting my life to social change work and taking the radical step of redefining security in terms of relationships instead of bank balance. I'm about to find out how well that works.

As most of you know, I'm sick. In January I discovered I have an aggressive form of multiple myeloma and my #1 job right now is getting well. That means trying to place the cancer in remission so that I can resume my life's work: building a better world through articulating and promoting community and what it takes and on a day-to-day basis to live cooperatively.

The good news is that I have a decent chance of weathering this storm. A lot of progress has been made in treating multiple myeloma in recent years and I'm about to go to Mayo Clinic to undergo a stem-cell-transplant, designed to restart my bone marrow by wiping out the cancer there (the site of my cancer) and recolonizing it with my own healthy stem cells. This is the latest thinking in how best to treat my condition. With luck, it will knock back the cancer and open a window in which I can enjoy a good quality of life for years ahead. How long that window will remain open is the $64,000 question. It varies from person to person.

Where Medical Costs Swamp My Bank Balance
I am five months and counting into heavy-duty medical treatment with at least two more months of serious expenses ahead of me, after which I'm not sure what to expect, but I think it's reasonable to project some maintenance medicine will be ordered and that will mean further expenses.

While I am fortunate enough (by virtue of being over 65) to be eligible for the protective umbrella of Medicare—and have secured excellent supplemental insurance through Medica—I am still on the hook for some fraction of my expenses. This means that most of the staggering medical bills that I've been generating (as I follow the advice of my oncologist) are covered by either the federal government or by my insurer. Please note however, that most is not the same as all.

So my costs have been mounting and the end is not yet in sight. On the other side of the equation my income has mostly dried up (because my debilitated health makes it difficult to travel to clients) and I am facing the music for having lived a life that did not emphasize financial accumulation. Thus my savings are modest and it appears inadequate to handle the entirety of my health care bills. Hence this appeal.

Unfortunately, I cannot offer donors a tax deduction. I investigated setting up a Health Savings Account (which offers contributors a tax deduction), but I'm not eligible for that by virtue of being on Medicare.
I have known for many months that this was coming but have been putting it off, both because I was hoping for better information, and because it's awkward asking for support. As someone who managed FIC's Development program for 17 years I got to the place of being comfortable asking others to contribute to a worthy cause. And when Geoph Kozeny was diagnosed with pancreatic cancer in 2007 I cheerfully took the lead on getting $20,000 donated to cover his medical expenses. But asking for myself is harder.

The Back Story It was just about a year ago that I pulled up stakes in northeast Missouri after 41 years and moved to North Carolina. While my time as a Tarheel proved to be all too short (the down side was that I was really looking forward to seeing what I could create with Joe & María; the upside was that it was terrific moving to Duluth to be with Susan six months later), it marked the first time since 1971 that I was solely responsible for my own finances. It was an experiment to see if I could return to the work-a-day world as a financially self-sufficient adult.

It's now a year later, and the experiment continues. While the first half year went fine (I had steady work as a consultant), everything slid into reverse the second half, which has mainly been characterized by my suddenly needing to cope with the expenses of treating multiple myeloma.

A number of people close to me have discreetly inquired if I have enough money to cover my bills. The truth is, I'm not sure. I face a double whammy in that I'm accruing medical bills at a frightening rate and am simultaneously sharply diminished in what I can earn. Since I was hospitalized and discovered my cancer in January, money has been flowing out much faster than it's been flowing in. Taking stock of my finances today, on the verge of my going down to Mayo for a stem-cell transplant, my treatment is about to enter a new phase. While I will soon cease twice-weekly infusions in Duluth, those costs will be replaced by ones in Rochester, where I will be seeing medical professionals daily for about six weeks. Plus I'll need to cover my housing at Transplant House (while much more affordable than staying in the hospital, it isn't free). Thus, the health care meter will still be merrily ticking away at least until mid-August.
My financial reality over the prior 12 months partitions neatly into two disparate segments, each about six months long. At first, I reaped the success of my Dr. Jekyll consulting, characterized by steady work and limited expenses. While that put my bank account seriously into the black, the wheels fell off my financial wagon when my lower back pain flared up again in mid-December. It turned out that was a harbinger of bad news coming: the revelation of my cancer at the end of January. Essentially, Mr. Hyde had taken over the reins of my financial conveyance.
Today, even with insurance in place, I am puzzling out how much I am personally responsible for my medical bills. While the lion's share of the costs will be covered by Medicare and Medica, I am nonetheless on the hook for some fraction of the total bill and if the grand sum is grand enough—and believe me, mine is spiraling into grander territory all the time—even a small fraction of the total can be eye-popping. Here are the vagaries I'm wrestling with:

Financial Uncertainties Going Forward
o  Have I seen all the bills for work done so far (or will more trickle in later)? I have already had multiple experiences with people from Accounts Receivable (from various health care providers) telling me face-to-face that the bill they were handing me was complete, only to have them come back later with additional charges that they expected me to honor. Grr.

o  Is the accounting accurate? Has Aetna (my supplemental insurer Jan 1-March 31) paid everything they should with respect to my various bills? I have gobs of paperwork in hand (good) but it will take me hours to pore over it all checking for mistakes and inconsistencies (not so good). I have to keep in mind that as far as Aetna and St Luke's Hospital are concerned, both are more than happy to have me pay more, and I can't count on them holding my financial interests closest to their hearts—however much they tell me otherwise.

o  How much will I be expected to pay for the six weeks of treatment I'm about to undergo at Mayo Clinic? In addition to having limited familiarity with how Mayo charges, much depends on how I respond to treatment. If all goes well, the entire procedure will be done on an outpatient basis, which means no overnights in the hospital. As you might expect that will help contain costs substantially, but it is not prudent to base expected costs on the best possible outcome. It might be more expensive than that. In fact, it might be a lot more than that.

o  What kind of medical expenses will I be facing after I return home from Rochester? Even if I come through the stem-cell transplant with flying colors (hey, I'd consider walking colors to be a great outcome), my oncologist may recommend an ongoing course of maintenance chemotherapy, for which there will be additional costs. If my doctor tells me to take x—with the intention of keeping the light of my cancer under a bushel—I'm not going to compromise my health to pinch pennies. Rather, I'm going to take x now and figure out how to pay for it later.

o  How quickly, if at all, will I be able to return to consulting work, and therefore able to reverse the tide of my cash flow and start to see it coming my way again? I have work penciled in for September and October. Will I be well enough to answer the bell?
• • •The upshot of all this is that I don't have a clear picture of what I'll ultimately be paying to treat my cancer. While I have cash in hand to cover all the bills that have reached me so far, that's about all I have. I'm not confident that I have all the bills for the care I've received to date, I know there are more coming, and I don't know how quickly I'll be able to earn money again. 

Seeing this coming, I have been careful about paying down my bills. (Fortunately, no care provider is withholding service until I'm more current.) I have been managing my dwindling funds to make them last until I can see money coming in again—hopefully sometime this fall, but it may be later. Happily, care providers are mostly wiling to work with patients who are financially strapped. Thus, if I owe the hospital over $5000 (which I do) they are OK with my making payments of $100/month. By stretching out my payments, I manufacture some wiggle room.

What if the amount I raise with this appeal is more than I need to cover my medical costs (a nice problem to have)? As most of you know, one of the things I am prioritizing now that I've retired from FIC administration and have been facing my mortality is work on one or more books about group dynamics, starting with one on consensus. With that in mind I propose earmarking any surplus to help publish my writing. I have not yet turned my attention to how I'll get published so any extra funds will be most welcome there.

If you are moved by this appeal to make a contribution to my heath care, please mail a check made out to Laird Schaub to:
1014 Chester Park Dr
Duluth MN 55812

Alternately, you can send a contribution via PayPal, using my email address: laird@ic.org.

Thanks for considering it.

Pages

Subscribe to The Cohousing Association aggregator