I continue my health enhancing activities, including one hour each mid morning (except long infusion days) on my Precor AMT Adaptive Motion Trainer (a hybrid of stair stepper and elliptical - an excellent no impact workout, which allows me to use my laptop to browse, watch videos and type [with even more errors than my usual many errant key strikes due to old-age neuro-degeneration]). I do the AMT alone in our bedroom while Gigi is downstairs. We have small, lightweight neck-lanyard walkie talkies (as ell as cell phones) in case we need to talk. In the afternoon, I do an hour on the recumbent bicycle in the family room, where we watch movies together with running commentary and analysis. This is one of our favorite activities, for which we praise the pause and rewind buttons. According to my Apple watch, I usually burn around 600 extra calories/day, which enables me to indulge - in carefully-limited fashion - in my one remaining physical pleasure: clever combinations of fat, sugar, protein and fiber, respectively.
We intermittently (breaks are necessary or it becomes obsessive) search the literature for other or additional cancer treatments. Of especial interest are re-purposed drugs as possible adjuncts. Both metformin and ivermectin have a solid literature base as effective adjuncts, complete with study of biochemical mechanisms by which they reduce the usual emergence of cancer cell lines which are resistant to the agents which have, in effect, selected for them as antibiotics select for resistant bacteria. Both of these drugs are well known, well studied and non-toxic at therapeutic doses - contrary to the unprecedented propaganda campaign aimed at demonizing ivermectin and those physicians who even discuss it in the very manner physicians have always ācrowd sourcedā experience-based knowledge and thereby significantly advanced medical knowledge, generally
Finally, and most important, is the first word in the title - āloveā. Gigiās illness has been, like most of lifeās painful experiences, revelatory and moulding as to my person and my understanding of self. I have undergone sufficient self-analysis to know at the outset, that without discipline, my formative childhood abandonment issues would contaminate and perhaps overwhelm any effort I would make in responding to Gigiās needs during this illness. Again, I have worked through and learned to abstain from acting on such feelings - fears of abandonment - in my lifelong quest to be a less self-centered, dependent individual. Thus, I made a conscious decision that I would continually monitor my thoughts, fears and actions so as to act - to the extent I am capable - for fulfillment of Gigiās needs, rather than my own. Usually, my mere conscious awareness of the emergence of such impulses, allows me to refrain from acting on them. My self-talk goes - āthis is about Gigi, NOT meā. If I am unsure, I discuss it - with Gigi, a trusted friend or our children.
Gigi and I have been together since 1984. I am very aware that I have not been the easiest man to which a woman night be married. Accordingly, as I did before the illness, I have told Gigi many times just how grateful I am that she stuck with me - only more urgently than I did before. This is my best flesh-and-bones model of unconditional love and I have incorporated that model. I can can say I learned from Gigi how to love unconditionally. It follows, then, that I have told friends and family that Gigi saved my life twice over. First, and most mechanistically, she spotted a melanoma on my chest that our skilled dermatologist thought as benign. He ate crow as a side-order when he consumed the biopsy report. A substantial wide excision along with a sentinel lymph node in my axilla under general anesthesia, ended that rescue episode.
The second salvation of my person by Gigi was the aforementioned NOT running away for self-preservation. In the middle of my outwardly-successful anesthesia career, I got myself addicted to fentanyl. That story is long and beside the point. The essence is that I was toxic to people in my vicinity in ways which, for me, felt like a matter of life and death. Inside, I was drowning in an ocean of shame and self-loathing, while desperately trying to look OK on the outside. Long story abbreviated, Gigi stuck with me through a 5-month rehab in Atlanta and through the very painful adjustment of my personhood and our relationship. Bottom line, she stayed and worked on herself and on us. This saved me as surely as her diagnosing the melanoma.
Not only did she save me physically, however. Her presence, kindness and love enabled me to finally become and see myself as a decent human being - behavior and a self-image which had eluded me for the first 47 years of my life. In rehab at age 47, I was told āYouāre only as sick as your secrets and, if youāre like me, your deepest secret is that āif you knew me, if you saw who really lives in my skin, you would run - not walk - to get far away from meāā. That was my secret. Itās called toxic shame.
Through addiction recovery 33 years ago, plus Gigiās cancer, I am now able to set aside my own perceived needs (āwantsā, really), including existential angst of various flavors, and to act according to her needs. As a bonus, my overriding feeling is gratitude - gratitude that I am able to do the things I do to take care of this woman I love more than I used to believe I was capable of loving anyone. That, believe it or not, I experience as a gift given me by this terrible reality, though I had a prior 4 year similar effort ( and feeling of gratitude) throughout the Covid period. Then, prior to Gigiās lupus diagnosis and hip replacements, she was mostly immobilized for those years and needed much help. Having had that āwarm upā, I feel that this is what I was born to do; gone are my eternal existential questions.
There are other ancillary results - mostly positive ones - of Gigiās illness. I really have no option but to accept the need to live in the moment. My innate fear-based self - reinforced by my line of work - was ever inclined to be consciously vigilant (the motto of the American Society of Anesthesiologists is āvigilanceā), āsituationally awareā so as to anticipate the next thing which could possibly become a threat and ever trying to prevent it; being ready to intervene to stop it.
Had I continued it, such an approach to Gigiās cancer would have either killed me or driven me promptly insane. Before, I would have treated every passing symptom, however mild, as life-threatening and begun to obsessively and compulsively search for a fix. Now, there are so many potential harbingers, doing that is simply impossible. āOne day at a timeā has constricted at times to āone hour at a timeā or āone minute at a timeā. I can only take things as they come and am mostly living in the moment. A small example: if Gigi speaks to me while I am on my laptop, I close it, look her in the eye, listen actively to whatever she says and engage in conversation as appropriate. This is an example of my conscious decision to be emotionally present with Gigi at every opportunity - to not miss a single chance to interact with her.
Spiritually, too, we are exploring. Gigi was raised in a fire and brimstone Methodist church in WV. She emerged a Christian in belief but with strong avoidant reflexes when it came to church or organized religion. She lives a morally Christian life. About 25 years ago, our across-the-street neighbor, Jane, was diagnosed with ovarian cancer. While we were neighborly, Gigi wasnāt particularly close with Jane; actually she thought Jane had some rather ārough edgesā and didnāt particularly like her.
It turned out that, because of blood clots from her chemo for ovarian cancer, Jane needed to have twice daily injections of Lovenox, an anticoagulant. Most patients do this themselves. Jane couldnāt stick herself. Gigi quietly volunteered and went to Janeās house twice a day, morning and evening, every day for an entire year; never missed once. Now, thinking back on it, Gigi says that she is very glad she did that and would not have been able to live with herself had she not. At the time, she even asked Jane to not publicize what she was doing. Gigi is shy and preferred no recognition or praise from anyone. It was merely a personal kindness she wished to do for Janeās benefit only.
Another series of acts gives further insight into Gigiās character. Just before we met in Harrisburg, Gigi was in the process of separating from her then husband and was asked by one of her hospital patients to do some private duty nursing at his home. He was a well-known wealthy local businessman with a reputation for uprightness and charity. She took care of him outside her normal hospital work for about a year. He brought Gigi and her young daughter along on several vacations, along with his wife and family members.
Being a worldly and cynical fellow back then, when she later told me about this I figured there had to be a sexual angle. Wrong! When Gigi first encountered him, he was 76 years old and was in the hospital for an orchiectomy, to treat his metastatic prostate cancer. So, a sexual attraction couldnāt have been the reason. Gigi told me about all this soon after we resumed dating (after I had moved away and dropped her, as explained above).
She reluctantly told me that when he died - about a year earlier - she received an unexpected call from his lawyer. The lawyer told her that Mr. X (in the interests of privacy) had provided for her in his will! He left her his Mercedes auto, his Cessna 172, and a tract of land (destined to be a housing development of 200 homes) worth over $2 million! Because of her character, she immediately told the lawyer she could not possibly accept any of it and asked for the necessary paperwork to decline these bequests.
She explained to me that while she would have liked to have some of the proceeds to assure college funds for her young daughter, she could not accept anything. Thatās because she believed this seemingly generous act was, in reality, based on a pathological dependency. Somehow, she told me, Mr. X had evolved an erroneous belief that, in some magical way, Gigi would be able to save him from the advanced cancer. She also thought that such significant assets rightly belonged to his family, not herā¦ So, she foreswore all of it, even declining a gratuity offered by the family for acting honorably in their interest That is another insight into Gigiās values and character. I donāt think she ever even told her parents about any of this.
In addition to watching streaming movies, we have sought out some spiritual videos, usually on YouTube. We are exploring theism (Gigi always was a theist and Christian) and Christianity (I became a theist more than a year ago - based upon scientific evidence as to the nature of the universe and of living organisms). Born nominally Jewish, I have been attracted to Christianity since my early teens and would like to believe in the historical and Biblical Jesus. In that regard, too, Iām still a work in progress.
We are especially enthralled by videos of John Lennox, an Oxford mathematician, Christian and theologian and those ofJordan Peterson, whose belief in Christ is evolving, as are my own. Both men bear powerful witness to spiritual and material reality in comprehensible ways. Both have an uncanny ability to use language to describe their mental concepts, beliefs and actual reality in an almost visible manner. Both Gigi and I, understandably I think, deeply desire to understand the context and value of our lives.
I have had another stunning realization as well. Immersed as I am in Gigiās physical needs and emotional lability (multi-day episodes of diarrhea 25 times/day will do that to you), I hadnāt thought much about my own vulnerability and mortality. Since this began, I have had no formed thoughts of my life continuing, from which Gigi is absent. I had previously been certain that I would die first - either suddenly or following a prolonged illness. It never occurred to me that I would find myself in this position.
More importantly, I discovered that while all my conscious effort - literally near 100% - was dedicated to Gigiās needs, that I had acquired an unarticulated belief I am magically immune from death myself, while doing those absolutely essential tasks! Itās as if I were saying, āSorry, Mr. Grim Reaper, Iām busy now doing important stuff. Youāll have to come back later.ā Another surprising twist is that Gigiās illness has loosened my own extreme tight grip on my lifelong strong survival instinct. If/when Gigi goes, I just have no concept of what life could be like for me. I surely have no enthusiasm for it. Donāt get me wrong - I will not be suicidal. Rather, I sense I would exist as though a big part of my self were missing; maybe all my limbs gone. Or, like someone lobotomized - emotionally flat, numb to the point of being no longer aware of self; no longer fully conscious or caring about much of anything.
Our three children are all grown, independent, self-supporting, healthy and OK with themselves. They are not particularly close to each other, as we are a āblendedā family: my son, Patrickās mother was Swiss and he was born and grew up in Zurich. I wasnāt really part of his childhood; he is a serial entrepreneur. Nonetheless, we have had a close relationship throughout his adult life. Our daughter, Amanda, issued from Gigiās first marriage. I came to know her when she was 7 and we have had a comfortable relationship from the start. Jonathan is our only biological son, together. Like many father/son relationships, ours has had some tensions, but I think these have been outgrown - by both of us.
Having prudently and frequently foregone present consumption over the years of our marriage, we have considerable savings. Though Gigiās illness has added some costs, because we have husbanded our savings carefully, we are not being threatened economically. In fact, we saved in order to be able to leave some financial cushion for our children. Accordingly, more than a decade ago, we created a family limited partnership (FLP) and trust, which allowed us to shelter most of our savings from confiscation by the ever-rapacious federal government through the ādeath taxā.
I have ongoing financial peace of mind from having done this. Most medical expenses are covered by Medicare and our Medicare supplement private insurance. Nonetheless, there are extras, which are out-of-pocket. That lifelong financial prudence allows us to buy things without worry. Last week, for instance, I bought a physiological monitor (like the ones I used in anesthesia practice) which shows EKG, non-invasive BP, pulse oximetry and temperature so I could know in real time, Gigiās vital signs during those periods of unusual symptoms, like palpitations. These can be scary when certain blood levels are known to be out of whack and one can only feel the pulse. In passing, I will mention that until recently, the cost of such monitors was > $10,000. That recently changes quite dramatically. This one - and it is very good - was $500!
To give the flavor of life in the time of cancer and chemotherapy, I will describe this morning. Gigi came downstairs for coffee, as usual. As, usual, we discussed our sleep quality (very important to both of us), shared our affectionate hug and kiss and voiced our love for each other. Gigi asked me to check something after my coffee. Being unable to wait, I insisted - asking what? She said she felt something in the upper left side of her abdomen. I had her lie down and immediately felt that her spleen was enlarged. I could feel its edge about 2 inches below the lowest rib (It should not be palpable at all). Most importantly, it was not tender or painful. That would have meant it had swollen rapidly, with risk of spontaneous rupture. I asked her to email her oncologist, she did, and received a phone call 15 minutes later. I was afraid they would send us to the ER (and waste an entire day). Fortunately, they offered an office visit, which we declined, since they said they werenāt concerned since it wasnāt painful.
Even as I was writing this, Gigi called me on the walkie-talkie each of us wears around our necks on a lanyard. With a shaky voice, she asked me to come upstairs right away, where I found her, pale, lying in bed with the automatic BP device on her wrist. I asked what was wrong and she took way too long to answer. She finally asked me to feel her pulse, which was 120 and somewhat feint. The BP was 96/45, saturation 98%. She eventually told me she had just taken a shower (She had a similar episode in the past after a shower), and was partly-dressed and sitting on the edge of the bathtub bending over for a prolonged period trying to dress herself. When she did this, she almost fainted, felt palpitations and became badly short of breath.
I knew this was hypovolemia from the previous two days of diarrhea. When one has decreased intravascular volume and is vasodilated by a hot shower and one bends over and holds oneās breath (Valsalva maneuver) these circumstances combine to drastically reduce venous return to the heart, which radically reduces cardiac output, simultaneously causing backup of blood into the blood vessels of the lungs. This results in the combination of symptoms cited and they are frightening, to say the least. They are self-limited, however, providing one lies down, and doesnāt fall incurring an injury. She felt fine again, lying down, in a few minutes. If you simply multiply such events by 50 or so over 6 weeks, you get an impression of āLove in the Time of Cancerā.
Loving and trying desperately to reduce pain and suffering one day at a time at times compresses to one hour at a time or to minute at a time, as I said. My former existential angst having vaporized, I now live in the moment. Also absent are the eternal questions: why am I here? does my existence have purpose? I am living in the answers. I have quickly come to believe I was born to do precisely what I am doing. I am loving Gigi in ways I used to think myself incapable - too selfish.
Each day we learn new lessons in how to be with each other as emotionally non-dependently as possible. I think we both try to be emotionally present and honest with each other in every interaction. This is no small task. Many long married couples simply fall into complacent codependent roles with manipulation of the other as a mechanism of āpeaceā and āstabilityā(not rocking the boat). To the extent that works, I believe it also prevents real intimacy and responsibility - i.e. the ability to respond honestly and share what may be some uncomfortable feelings which really need to be worked through in an honest give and take; itās work. In short, we both try to permit our relationship to continue to ripen and grow in true love in all the connotations of that word: agape, philia, eros, philautia.
Once upon a time, beginning in childhood, usually alone in bed at night, I believed that the answer to all of lifeās important questions just might be revealed at the moment of death - a brief, grand AHA!! moment - all the dimensions of understanding might unfold at the speed of light to an infinitely expanded consciousness - running at unimaginable biological clock speeds. In case this happened, in my imaginings I even prepped myself to say, āThank you God, now I seeā! Fanciful, I know. Well, I havenāt had that moment (yet?), but some eternal truths are being revealed slowly, in ways I never dreamed of. As, for example, and most uncharacteristic of the younger me - the shocking fact that my overriding spontaneous feeling during all this suffering in the time of cancer is love for my mate and profound gratitude for being able to help her in whatever ways I am able. I bear witness to every word she says and every look she takes and endeavor to respond with all-but angelic love. Gigi tells me sometimes, she feels āGod loveā for me and from me. I feel that, too, and that is the greatest gift of all this finality. There is no doubt this is for keeps.
Never, they say, judge a book by its cover or a gift by its wrapper. Cancer is as crappy a wrapper as there is. Though this gift is not unequivocal in its inflection toward finality of both our lives, it is powerful, life-changing and has forced some broad new perspectives on life, as it rapidly evolves without an instruction manual. It also occurs to me that we are fortunate to be living in times where at least some medical help and pain relief exist. For most of human history, life was not only ānasty, brutal and shortā- but departing it with no known means of succor beyond powerless attendance of loved ones - must have been uniformly excruciating. I have reason to hope and will do everything in my power to avoid an outcome such as that.
Optional footnote:
*All 6 members of the anesthesia group which hired me strraight out of residency were indicted for fraud of many flavors (I had never heard of most of them) going back more than 5 years before I was hired and included my first three months of work. Though I studied for more than 13 years in pursuit of the necessary credentials to practice anesthesiology, I was, said the feds, a much quicker study in crime. It was alleged that while it took all those years to become a physician, I become an accomplished felon on day 3 of my very first medical practice!
This came about because in PA, anesthesiologists medically directed (or supervised) several nurse anesthetists simultaneously, rather than simply administer one anesthetic by themselves - which would have been my preference. Soon after we were charged, I tried to explain that the situation as a billing dispute in reality. It was very unfair to anesthesiologists. In effect, it penalized them for caring for three times the number of patients as compared to doing one at a time as I preferred.
When I finished my explanation to the hospital and said that if I was not going to be fairly paid for doing more work and in a manner which was not even my preferred mode of practice, the older medical director of the hospital wagged his finger at me and said āYoung man, youād better not limit the number of patients this hospital can take care ofā! By reflex, I heard myself say āYou know what, David, I am going to limit that number. I quitā! I immediately went to my partners, gave 2 weeks notice and left. I found a job in State College within days and moved there; I stayed one and a half years and then left to go to law school, after I beat the trumped-up federal rap, after refusing immunity in return for testimony against my partners. On the eve of trial (which never happened because my partners pled guilty to some misdemeanors), charges against me were dropped.
I still had a fight with the judge over the wording of the dismissal order, which said āThis dismissal is pursuant to a plea agreementā. You see, whenever you apply for a job or a license, youāre asked if you have ever been accused or convicted of a crime and I would need to clearly prove the disposition of that accusation. As initially written, the dismissal order did not say I was innocent. It strongly implied I had pled guilty to something, when I had not, leaving me with a complicated explanation and remaining under a cloud.
I had to make a formal motion for amendment of the dismissal order. In that pleading, I noted that I was charged as an individual and that pleas made by other individuals had nothing to do with her order of dismissal as to me. I reminded the judge that the standard of veracity to which I was held in her court was āthe truth, the whole truth and nothing but the truthā. I said that the dismissal order not only clearly fell well short of that standard, but that is was obfuscatory by design; that if I couldnāt insist that a US District Court judge uphold the highest standard of truth in her orders, to whom should I turn? She finally deleted the words āThis dismissal order is pursuant to a plea agreementā. I prevailed in what was a two year ordeal.