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?
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: firstname.lastname@example.org.
Thanks for considering it.