After a long time of silence, silence that I considered a necessary part of my healing, I am returning to this blog. So much to share, retroactively, of what some of my wanderings were in the last year of silence. But, today, everything is present tense. I relocated to yet another sister’s home in my ongoing quest to get back on my feet, literally and economically, after the challenging medical circumstances of 2014-2017. I came here in mid-March and it is a beautiful place, but not one I can settle into without a car and a job and affordable housing, all outside my reach. I am lucky to be amidst this beauty for so long as I am allowed as I keep figuring out the next direction for finally making a more permanent home for myself, at last.
A complete remission has been achieved and maintained now for almost 20 months since the ACST in late September, 2015. Yes, I did relapse too quickly after the ACST (autologous stem cell transplant) and that makes me sad after going through all that it took out of me to do the ACST. But, I still believe the ACST did enough to lower the tumor burden of myeloma to the point that it is no longer in my bone marrow as a result of the medications I have been taking since late December, 2015. Unfortunately, those drugs are obscenely expensive (as I’ve probably said before; having risen in cost to $22,537/month) and that is the cost of my remission and continued “good health.” I could not afford this without help that I have received from the Leukemia & Lymphoma Society and a reduction in out-of-pocket costs granted by the Social Security Administration. Those of you entering Medicare years should know that Medicare has been legislatively prevented from negotiating lower prices. Also, the drug companies cannot offer any help in reducing the cost if one is a Medicare patient, as they will for people who are either uninsured or privately insured. In short, Medicare is paying the full retail price of capsules that cost, respectively, $3247 ea./month x 3 and $610 ea./mo x 21).
I write this as the country has been thrown into fear and anger over what will happen to their healthcare as a result of the current Republican vengeance against the Affordable Care Act and Medicaid; it is hard not to fear that they will come after Medicare next. I am one of the many whose medical care to fight this cancer was completely covered by the insurance exchanges created by the Affordable Care Act. Yes, I paid for a more expensive plan each month, and I am grateful; neither I nor my family were left with a huge monetary debt for that care. Yes, if the ACA had not been in place, I would have been on Medicaid and my outcome may have been different as many of the specialists I sought out in their medical institutions did not accept Medicaid where I then lived. I am a lucky woman to have gotten this disease under control before I became eligible for Medicare.
Now, though, I am living in a remote rural section of northeast Nevada; it is officially referred to as frontier by Nevada State agencies. Healthcare here is minimal and disturbing to me in its lack of access. The gold mining companies near here maintain their own medical clinics for employees who do not need to patronize the local providers outside those networks. There are not enough resources available for the population of what is considered the third “largest” town in Nevada. There are three vendors who provide air flight services for transporting patients to Salt Lake City or Reno in the event of more critical medical care or emergencies that cannot be managed here. I live farther out from Elko, on rangeland up against the base of the Ruby Mountains. I travel to Salt Lake City to the University of Utah, a 4-5 hour drive one way, for my check-ups that, until recently, were every month. I must use FedEx to ship my more complex blood tests to SLC as well as there are not the resources to handle them here. Yes, there is a hospital–a for-profit hospital. Yet, it cannot deliver any complex chemotherapy such as what I might need in the future when these oral drugs may no longer be effective (an expected outcome with multiple myeloma).
Additionally, I have yet been unable to locate a primary care physician, who I must have on board locally, because most of the doctors I have been referred to do not accept Medicare–this in a rural community with many older residents! Everyone must travel, often in another direction west, to a very small town where they can see Medicare-associated doctors. Luckily, I am in good health with respect to the common infections that could be a problem for me because my immune system is still extremely compromised. I tend to think this is because I have spent so much time in solitude the past few years. The children of parents who do not vaccinate their children present a threat as I am vulnerable to all those childhood diseases that periodically flare into large outbreaks, e.g., measles, mumps, chickenpox. My immune system still cannot accept any live vaccines to replace all the immunity I had built up over a lifetime before the ACST. Again, I am lucky to date and I appreciate what my body has been able to overcome after the rigors of the ACST.
I am talking about all this now because I have been in several rural communities in the past two years. The people in these communities voted for Trump and the Republican majorities now in control of the House. They believed he cared about them or maybe they were just fed up and sending out a reckless message, not looking hard enough into what some of the proposed agendas are going to do to harm them. (It’s not just healthcare; it’s also NAFTA and midwestern farmers liable to be negatively affected by some of the proposed repeals, to name only two of many more.) I read periodicals dedicated to their concerns, philosophies, and frustrations with many issues in an effort to understand the “other” side or at least the differences between us, even though I do not agree often and am struck by the vehemence of a poisonous anger and what they believe has been their victimization. I want to hear the other sides but, unfortunately, there is a serious lack of critical thinking in this country, on all sides (if one must parse us into “sides”). I wonder how it will be alleviated, both in our educational systems and among those outside school? I wonder what I can do and will do to make a difference? don’t yet know how that can be done on a larger, more comprehensive and compassionate scale that will make a difference to the current chaotic, mean-spirited, ideological differences driving behavior that shocks and frightens many. And the underlying problems of racism, misogyny, classism, anti-LGBTQI legislation and persecution, plus unconscionable levels of poverty and homelessness still do not garner the empathy or willingness to change dangerous attitudes that are impervious to learning to see the “other” as a human being denied the dignity of essential human rights even here in our country.
Some of you who read me (and you are a small number), you need to know that it was never my desire to speak of political things in this blog, and I still do not want to use the blog for that purpose. BUT, I look out from the isolation of where I now live, knowing I must return to a city where I can afford to live and have some sort of income that sustains me (ageism is alive and well, too), and I know that I must understand what is possible going forward, despite my despair about what I see happening in the world at large. There are good people on all sides but there is such bad behavior being exercised, too, by people I would consider harmful, bad, or just plain mean. Rumi advises us to be among the people who help your being and I wish I was more able to live among such people now or create a way (or job) that will help me not only work on behalf of such people but, even more urgently, make a positive impact for change among those who “do not help my being” at first glance but help me grow and maybe allow me to help them grow. Wishful thinking of an idealist but I am who I am, always open to change and growth, always committed to doing what I believe is the “right” thing.
Thus, I ponder what it will mean to construct a meaningful “re-missionr” for my life. Mission is a guiding principle for me, having spent most of my years in non-profit work. I believe in social justice, environmental justice, racial justice, and the power of women to resist a sexist backward effort to take away any “rights” we have gained in the past 50 or more years. I am searching for how to best use myself in this life. Cancer has detoured me for several years; that is inevitable once one gets a diagnosis of an incurable disease. But, my life is not about cancer now. It is a part of who I am and it is under control. In fact, again, I say I am lucky that this is what I have had to deal with because there is life-saving treatment available that makes it nothing more than a chronic disease condition. Yes, there are a few side effects I dislike, but I have learned to live with them. Thankfully, I am now able to return to a job search and my writing.
Silence is part of healing; but, silence is not going to heal our communities. I’ve always believed that I would affect people’s lives for the better in a one-to-one encounter or exchange. I still believe that, both with my writing and my actions. I don’t yet know where I will land by the end of this year; I am searching. I am a warrior, despite my wounding. And, many of us, because of our wounds, are people now that sometimes still come from a place of fear and narrow-mindedness as a way to protect; this is just as true of liberals or progressives or conservatives, etc., all those labels we adopt that ultimately will mean nothing in a personal crisis requiring life-altering efforts to heal or survive a major crisis affecting all of us. I am just as flawed and working on what matters in terms of openness and commitment to values that are non-violent in action and words. Sometimes, it is hard, embarrassing to realize, disappointing. But, I use this blog to talk more about what is amazing in the world, despite what is awful; it is a counterbalance and I hope you will still be interested, regardless of how different we may be in our thinking. This is about connection, not separation. Thank you for following me.
P.S. I don’t post much on Facebook but, I have used Instagram to post photos of some of the landscapes where I have wandered in the last year; you can find me as fugubug (fugu being the Japanese word for the pufferfish).
Remission and “Re-Mission” by Linda Puffer is licensed under a Creative Commons Attribution 4.0 International License.