I am midway through cycle 5 – this cycle could easily be titled Keith dissolution. I notice myself disappearing at times- hours and days blend together in a strange array of vaguely interrelated activities. I keep hearing this term and discussion around ‘the new normal’ in the news. I’m trying to be careful not to make this state my ‘new normal’, but at times it feels like it may be. Now, three months into chemotherapy it feels like I am getting used to it and the people in my life are getting used to it. I’ve been poor at communicating, at staying connected, and I am noticing a desire to put all of my energies into a sort of self-preservation mode. I feel closed, disconnected, less open than I did in the early phases of my healing. This morning as I glanced in the mirror I realized I have been avoiding looking at myself or taking photographs (despite all the feedback about how well I rock a bald head). Yet again, this points to the intimate body-mind connection. This is no surprise at this point in my treatment. Many, in similar situations suffer from pretty severe depression as a combination of the physical and life changes along with the side effects of the various drugs. I do notice occasional depressive thoughts, however, I would consider my lower moments more like numbness or disconnection than depression.
I should share that I am writing this at my nadir point, where I am at my lowest blood counts, energy levels, and therefore mood. Only ONE more of these cycles, thank God. Checking my HRV app over the past months I see that it is exactly this Saturday, eight days after chemo where my vitals and energy begin to turn around. An interesting observation is that over the last couple of cycles I’ve also noticed a strong uptick in my sexual impulses and thoughts around this day. I find this a remarkable aspect of biology – despite being nearly dead physically, as soon as the energy shifts towards more strength, the ability, and impulse to procreate, along with the hormones and thoughts, follows. During my chemotherapy I have been observing a strict sexual continence, a topic I notice is sorely missing in discussions around healing and health, and men’s sexual health in general. This concept I will unpack post-chemo when I look back and share and analyze the different factors and choices I made to support myself during this period.
Allie has remained with me in these weeks, despite the difficulties of trying to share a space with a man going through significant physical, emotional, and mental swings daily. I am incredibly grateful for her willingness to sacrifice her health and sleep at times to support me. She has postponed her other plans stayed longer than we had anticipated as it was too difficult for either of my parents to travel here with the pandemic still rolling. I’m very grateful for her friendship and presence!
For now, I look ahead to (hopefully) a better week and soon the conclusion of my chemotherapy. My last treatment will run June 1-6 and the sixth, and final cycle will conclude on June 21. At one level, it feels like forever since I began, at another level time has passed quickly. I am beginning to plan and prepare for the shift from conventional to holistic treatment. The alternative and holistic care center I was visiting has begun a gradual reopening, allowing me to receive acupuncture again. I’m in the process of scheduling appointments with an integrative oncologist, kinesiologist, nutritionist, massage therapist, etc. The healing will continue in one fashion or another well beyond June.
Good news team. All that we are doing is working. Last week I performed my mid-treatment PET-CT scan and the results are in. My tumor has shrunk in size by about 80%! For those more imagistically inclined, that’s a 9 cm diameter grapefruit down to a 3 cm strawberry!
The other significant news is that the SUV (standard uptake value) of the tumor is now 2.4, down from 27.0 in January when my first scan was performed. The SUV is the rate at which the different tissues and/or tumors in the body metabolize special radioactive glucose injected intravenously before the test. You can see from my scans the significant difference:
January 22nd, 2020 (Before Treatment)
No need to circle anything here, as the massive tumor is indicated by the bright color in my left lung space – the organ appearing next to the tumor is my heart.
May 1st, 2020
(After 2 months of healing work and chemotherapy)
This time I circled the tumor in yellow, as you can see it is MUCH smaller and does not ‘light up’ like it did in January. I’ll explain this below.
The bright portions you see in my recent scan are what is clinically called a therapeutic response – meaning my bone marrow is lighting up because of the Neulasta medication, stimulating new blood cell growth. This was expected as my last injection was a few days before this scan.
What is important to note is that the tumor is not lighting up any more than the organs around it. My report said the tumor has a maximum SUV of approximately 2.4, minimally below mediastinal uptake, meaning that it is in the normal range for tissues in this area. This was given a Deauville Criteria score of 2, indicating a complete response to treatment. This is a very positive result for me as often patients’ mid-treatment scores can be Deauville 3 or 4, as inflamed tissue or continued cancerous activity may still be present.
When a nurse read the report to me over the phone I turned to Allie and high-fived her and breathed a deep sigh of relief. Since it was Cinco de Mayo we celebrated that evening with a Chipotle bowl and a terrible margarita in a bottle. Days later, my stomach is still not happy about that decision!
I told my doctor I was considering skipping the last two rounds of chemo – she suddenly became rather stern and explained that I need to complete the protocol to clean up any microscopic cancer cells not detectable on the scan. We laughed when I said I was joking and I just wanted to see her reaction.
Many people have asked me if I am elated or super-excited about this result. The truth is that I expected it. I know the work that I’ve been doing to heal, how you all have been showing up to support me, and listening to my intuition of what is happening inside me, was going to result in such news. Of course, I am thrilled to have it confirmed by a million-dollar machine and to be certain that the decisions I have been making the past 3 months have been good ones.
Today I am fasting and preparing to begin the fifth round of chemotherapy tomorrow. As I have written recently, the last weeks have been particularly difficult. The results above certainly help with my motivation, outlook and mood. June 21, the official last day of my chemotherapy regimen, feels a lot closer than it did in February. The healing and recovery will continue much beyond June, but at that point, most of it will be back in my hands.
As I mentioned in my last post, I want to say a few things about HRV today for those who may be interested.
In the late ’90s, researchers began to see the heart in a new light as studies noticed and defined a critical link between the heart and brain: The heart is in a constant two-way dialog with the brain. Our emotions change the signals the brain sends to the heart and the heart responds in complex ways. Research has shown that the heart communicates to the brain in four major ways: neurologically (through the transmission of nerve impulses), biochemically (via hormones and neurotransmitters), biophysically (through pressure waves) and energetically (through electromagnetic field interactions). Communication along all these conduits significantly affects the brain’s activity.
The heart’s input to the brain during positive emotional states facilitates cognitive function and reinforces positive feelings and emotional stability. This means that learning to generate increased heart rhythm coherence, by sustaining positive emotions, not only benefits the entire body, but also profoundly affects how we perceive, think, feel, and perform.
Therefore paying attention to, and altering what our hearts are up to may potentially have a profound impact on our daily wellbeing and health.
As I mentioned in my last post, the heart at rest was once thought to operate much like a metronome, faithfully beating out a regular, steady rhythm. Scientists and physicians now know, however, that this is far from the case. Rather than being monotonously regular, the rhythm of a healthy heart-even under resting conditions – is surprisingly irregular, with the time interval between consecutive heartbeats constantly changing. This naturally occurring beat-to-beat variation in heart rate is called heart rate variability (HRV).
This variability can be monitored and analyzed and provide incredible feedback for the state of our immune system, our emotional and mental states as well as our physical state. High-performance athletes are using this data to determine when to push intense training programs, when to rest and when the exact day is to break that record or to be at their highest level for competition.
I’ve been monitoring HRV for a couple of years and have been paying particular attention to my ups and downs during chemotherapy treatment. I believe HRV is a big part of the biohacking movement currently underway that is attempting to aim modern technology at improved vitality and health outcomes. It is certainly an area I am considering exploring on a more professional level in the near future.
I can go on indefinitely about HRV – there is an incredible amount of research and science out there, so search for yourself – a couple of great places to start are:
I particularly appreciate the HeartMath approach – in addition to highlighting the physical health benefits to improved HRV, the focus specifically on what they call Heart Coherence (also referred to as cardiac coherence or resonance). They demonstrate that greater than any physical tool at our disposal, our mental and emotional states play the largest role in balancing our ANS (autonomic nervous system) and creating an optimal state of heart/brain balance.
My introduction to HRV was during my yoga therapy training when I took to the front of the class wearing a measuring device to see what kind of coherence I could maintain while the class prodded me and teased me and attempted to make me uncomfortable. Relying on my yogic training and techniques I was very proud to keep a high level of coherence. Eventually, the one thing that knocked me out of coherence was the voice and presence of a jaded ex-girlfriend in the room playing a passive-aggressive game that was all too familiar to me! Another story for another day.
I’ve also worn measuring devices during meditation and kundalini retreats to learn more about my HRV and heart coherence, as a way to confirm that was is going on at the subtle level is also going on at the physical. The morning measurement process I use takes only 2 minutes and requires a smartphone and a chest strap. The last thing I’ll say for now is a quick word about devices and apps:
There are a lot of devices out there that claim to measure HRV – including ear clips and finger clips. My research has shown me that the only accurate way to measure HRV (currently) is a chest strap, with the one exception of a finger device called CorSense, which unfortunately runs $165. The best and most affordable options are the following two chest straps:
Polar H9 (released this year as a more affordable version of the classic H10)
My advice is to go with the H9, as my Wahoo device stopped working three times for me and I needed to warranty them. Polar has a much better record of reliability.
And finally, for apps, there are several good ones available out there:
InnerBalance by HeartMath has there own app which focuses on the emotional coherence I just referred to, however they REQUIRE their own finger device, which according to some researchers isn’t highly accurate. If you are primarily interested in the least technical and most user-friendly app, this is the one.
HRV4Training may be the best app for high-performance athletes.
EliteHRV is the one I use daily. It is very easy to use and each day gives a morning readiness score and the current state of my nervous system. A little more about this directly from their website:
The Morning Readiness gauge indicates your state of relative balance. In other words, it is comparing your HRV values to your recent past and telling you whether your Autonomic Nervous System (ANS) is in a similar state or if it is swinging widely outside of your norm.
1-3 is the red zone. This indicates a wide swing in balance either towards the Sympathetic or Parasympathetic side. A wide acute swing in either direction is usually in reaction to a strong acute stressor or reaching a threshold of accumulated stress.
4-6 is the yellow zone. Yellow indicates a similar, but not as drastic, change in relative balance as a red indication. Yellow days are often nothing to worry about in isolation.
7-10 is the green zone. Green indicates that your relative balance is very close to your norm. A perfect 10 score is achieved when your relative balance is slightly Parasympathetic leaning. This means that if you normally score around a 45 on your HRV score, then an HRV score of 46 may produce a relative balance score of 10.
The sensitivity of the 1-10 relative balance score depends on your individual patterns. If you often fluctuate widely day-to-day, then your relative balance gauge will become less sensitive to change. If your HRV scores hardly fluctuate at all, the relative balance gauge will become more sensitive to small changes.
This is the feedback I can use to observe how the choices I made in the last couple of days are effecting my health (stress, sleep, eating, alcohol, stress, sex, exercise, etc) and help me make more informed choices for the days ahead.
Ok, this was supposed to be a short article and its late so I’ll leave it here! If you’re interested in geeking out on this with me or have also been involved with HRV, please let me know!
This morning I felt my body-mind emerge from a long rest and recovery. Since exactly a week ago, I have been a fragment of myself physically and mentally. Barely able to practice any yoga, hardly able to write anything, unable to respond to messages, and mentally I was in a deep chemo fog. I had several situations with people this week where they swear I did or said something or referred to a past conversation that I simply have no awareness of! If this happens to you, please forgive me, and remind me with a sense of humor that I may have completely blacked out on a conversation or message that you sent me!
In my better moments, I meditate or tackle a rather heady Ken Wilber book called that Religion of Tomorrow that at least reminds me that I can do something besides watch YouTube and sleep.
Video Credit (Allie – Titled: “The moment you turn into your Dad”)
My bloodwork hit an all-time low last week, with my white blood cells and platelets near 0 and my red blood cells in the very low territory. In the early cycles, the effects of this would last 2-3 days, but in the last two cycles, I’ve had a week to deal with the strong after-effects. There is odd conjunction of energies happening in my physical body – the immunotherapy and chemotherapy drugs continue their work on destroying fast-dividing cells in my body (cancer cells, blood cells, hair cells, gut cells), while the G-CSF Neulasta injection works hardily in the opposite direction stimulating my bone marrow to blood cells. This is an odd battle to experience in one’s own body. The best place to perform this observation is on the sofa with Netflix or YouTube as support, trust me.
For years now I’ve been measuring my HRV (Heart Rate Variability) to observe changes in my health. HRV is different than your heart rate – when you attempt to feel your heart rate it should appear rather steady, approximately a beat a second based on your current health and activity. However, there are minute changes in length between each beat (for example 1.01 seconds, .99 seconds, .98 seconds, 1.00 seconds, etc). Higher variability is an indicator of greater health and an ability to recover from illness or intense training more quickly. HRV research has been dominated by high-performance athletes who are looking to squeeze out extra seconds on their performances, however, it is also being used by holistic healthcare practitioners such as yours truly to help monitor my body’s nervous system. I track things like sleep, eating, alcohol, stress, and sex, and then through a daily morning reading I have a sense if my nervous system is tilted in more sympathetic(fight or flight) parasympathetic (rest and relax) direction. Swings or tilts in either direction are often indicators of stress or illness. If monitored closely, it can predict an illness 24-36 hours in advance and give me some time to prepare by resting and supplementing as appropriate. Specifically, with this Neulasta shot, I see a massive drop in my HRV to around 40-45 (when my baseline is 60), which indicates a sever sympathetic (stressful) situation for the body.
Rather than go on here, I will write another article about HRV numbers and suggested apps and devices to use if this is something you want to get into. This is all a long-winded way to say that today my HB ‘popped’ back up into the mid 50s and it was accompanied by a much better sense of well-being and energy. Let’s hope it lasts!
Cycle 4, in progress. I am past the halfway point, at least for the chemotherapy portion of this healing journey. I am tired and I am very weak. I am noticing some anger and depression. I do not wish to write much. I wish for this to be over, to be back in good health and living life as I always did. It feels good to complain. Within the complaint there is some relaxation, as the other day I was speaking to a friend about her future plans, and realized for the first time in a long time, I am not planning or considering anything for the future. I am just here. My primary focus is beating cancer, staying alive, and recovering my immune system. I realize that if I did not have this healing crisis I would probably be even angrier and more frustrated at the prospect of being stuck at home during a pandemic. Especially at a time when I planned to be launching a business and shifting into new career directions.
Despite the frustration and anger, there is still gratitude. In this very moment, maybe not the all-pervasive radiant golden bubble of it, but in general this inner attitude persists for this process I am going through and everything and everyone that is supporting it.
I am particularly grateful for my close friend Allie, who has taken care of me this cycle. One month ago, she was in Thailand, considering if she should ride out the pandemic on a tropical island or return to the US to spend time with her parents and to support me. She decided to return, braving quarantine and border restrictions from Thailand to New Jersey to Colorado. After quarantining in New Jersey for two weeks, she drove 48 hours, dodging tornados and snow storms, sleeping in the back of her car before safely arriving in Colorado. My doctors were not particularly enthused by the idea of a caretaker traveling to me via Asia and New Jersey (you should have seen their faces when I told them!), but we took the best precautions possible given the circumstances.
Allie’s arrival coincides with a time where I simply need more support than I did in the beginning. After she arrived and began helping me, I noticed that I was probably pushing myself too much, trying to maintain with my old attitude of independence and self sufficiency.
It feels very safe and nourishing to have someone so close and supportive staying with me. Social distancing has been particularly hard for me and having a friend to cheer me up and share Netflix laughs with has been priceless. Unfortunately for her, she also must listen to my various ranting about quarantine, politics, society and the various other old man inquiries I take to distract myself from the pain of cancer. Please thank her otherwise I would probably be making these rants public!
I am sliding into my nadir days now, and in general I am noticing I am less responsive to the outside and to communications in general – I do apologize if I have not acknowledged your card or message in a timely fashion. Please keep checking-in with me, the smallest gestures mean a lot to me.
The snow falls gently outside as I sit down to write this afternoon. A gentle spring snowstorm has blanketed Colorado with a foot of snow. One of my saving graces during this period of coronavirus cancer treatment has been my afternoon stroll. These past two days were especially beautiful, snowy, cold and still. Not only is it a time for me to move my body as an important aspect of this healing process, it is also a time for me to detox my mind. It almost feels like a dog shaking off water, allowing all the fears and anxieties that may have accumulated from the news or my own mind to drop away. This time is sacred to me at this point I will not let anything prevent me from taking it as long as I am capable.
I have had a few of you inquire as to why I have not been blogging as much recently. The first reason is that I have been very weak and tired and a serious chemo brain fog has accompanied this. The aftermath of the 3rd cycle was more severe than the previous two – I needed to rely on painkillers and for several days I slept 12-14 hours from fatigue. My bloodwork last Friday placed me square in the ‘neutropenic’ category, with near zero white blood cell and platelet counts and a lowered red blood cell count. This means that my body is unable to fight infections, bruises easily, and is rather anemic and weak. Accompanying this is a mental and emotional low. While this is a normal response to chemotherapy, I believe I had a story in my mind that somehow, I would avoid these low points, that my body would resist and not succumb to these powerful drugs. The truth is that if the body does resist and persist, my oncologist increases the dosage each round until it does not, following her carefully scripted protocol. A lose-lose? A catch-22?
The second reason I have not been writing as much is because I notice that due to reason # 1, I find myself a bit grumpier than usual and I feel hesitant to publicly complain about my situation… Yet, I know many of you are curious about my ups and downs and so I will keep sharing and exploring this process with each of you.
I have also noticed that a big part of this grumpiness is with the ongoing situation in the world, for the grief and suffering that is so present now. Nearly all of us are grieving in one way or another, for the future that has been altered or taken away from us. I have lost trust in most mainstream media and governmental information sources. I am finding solace in several alternative sources. I will share my own journey in seeking accurate signal within all the noise that is currently being generated in the public sphere. MY future has not been altered that much – in fact, nor has my present. Quarantine was already on the menu. But I grieve for the untold story unfolding – beyond the coronavirus victims. The list is long. Every reference is someone close to home for me: For those falling into addiction, for those falling into depression, for those unable to get medical care for cancer or other serious ailments, for those unable to have an abortion, for those losing their income and careers, for those children now programmed with a belief that getting within 6-feet of a stranger is dangerous, for those losing their faith, their hope or their motivation. Etc, etc., etc. These untold stories will unfold over a much longer timeframe than corona, and with much heavier and extended consequence.
For now, I just want to say that I am noticing in myself and in my friends a tendency to avoid the pain of a crumbling society and system by projecting this grief onto the OTHER: Onto our government or it is officials, onto our families or partners, onto the virus itself or onto an untold number of targets. For me, the current target of choice is the sheepishness of human beings, their lack of ability to have any autonomy or sovereignty and their willingness to simply follow certain narratives presented to them through their partners, family or media. If I look more carefully and honestly, I can see that this is my own projected judgement and anxiety at not being as sovereign and narrative free as I desire to be! We are all clutching to various stories- compilations of our past, our desires and of societies expectations or our rejection of said expectations. May this be a fruitful time of exploration of the shadowy and unexamined parts of these stories.
I leave you with a beautiful poem called Waiting, recently shared with me by a dear friend from Holland. This first line, There is a good kind of waiting which trusts the agents of fermentation has remained with me as a potent metaphor for our current moment.