Tumor Dissolution – Cycle 3

Greetings from the underworld! I have been laying low the last few days, anticipating the usual several days of bone-crushing pain from my Neulasta shot. This round did not disappoint – I mentioned to a few of you that I could literally feel and hear my lymph system working. Liquid moving its way through tight channels…causing pressure and swelling. This body is fascinating! As I write this, a combination of pain killers and time has brought me into more equilibrium.

On the positive front, I am nearly halfway through treatment. My official midway point will be April 19th when I complete this third cycle. A few of you have been asking about my next scan: It will happen around May 1st, after the completion of my 4th round of chemo. I am certain my tumor has shrunk, and my suspicion is that it has radically decreased in size. I even have mental imagery of meeting my doctor the next day and her telling me they cannot find any trace of a tumor… why not be fully optimistic!? 

The PET scan done midway is to ensure that the tumor is responding to chemotherapy– however the data that comes back from the scan can be misleading. This is because the scan has a difficult time determining if the activity in the area is due to malignant cells, or inflammation from the body recovering the tumor space. It will for sure detect the overall size of the tumor, and from what I read, this mid-treatment scan is more for patient encouragement than medical necessity. The ‘big’ scan will be approximately 6 weeks after chemotherapy when I will see the results of this painstaking 5-month journey.

Throughout this last week I had the great fortune of being supported all week by my sister Carrie, herself a nurse at Children’s Hospital in Denver. With coronavirus quieting things significantly at her hospital, she was able to take the week off for some brother-sister-chemo bonding time!

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We tore through Ozark season 3 together and managed a nice afternoon walk each day – I think the weather was great except for this one day where we had some spring snow and cold temps. Carrie is now well-versed on the usage of my juicer machine but refuses to partake in the bitter green culinary delights herself.

Thank you Carrie!

Overall, I am in relatively good spirits – I’m noticing a similarity in feeling to the 100 day Zen retreats I’ve done in the past. There is this point in the middle where the beginning is no longer in strong memory and the end is not yet in sight. In the middle, in the midst, of the journey. Small delights are making a big difference for me – letters in the mail, voice messages, my daily walk to the creek. As the body doesn’t respond like I always wish it to, I rely more on my state of mind, my intention to be present and awake and alive. This really is a practice of accepting. I have things I WANT to do – and admit in moments these things feel like ‘should do’s’. I’m sure many of you can relate to this attitude in this time of stay at home orders and social distancing. Be productive!…..

This is a bigger topic to write about (and here I am creating another should!), related to putting pressure on myself to ‘do something’ with this healing journey, rather than just living it and accepting it and being free and spontaneous to what manifests within it and into the future.

Supporting Keith

I intended to write this over a week ago, yet with coronavirus affecting so many lives it feels somewhat irresponsible for me to ask for anything. This is magnified by the fact that there are truly, many people in greater need than me in this moment. For most of my life, asking for help has been extremely difficult for me. I have been very successful to this point using an attitude and approach of independence and autonomy. However, in recent years I have become increasingly aware of the limitations of my individuality. Therefore, as part of my practice and healing, I will take this opportunity to ask, to express this need, without expecting anything. I may even express it again, and differently, in the future.

And I would be remiss if I did not share that until this point I have received an abundance of support: fresh meals, cards, rides, packages, sweet messages, financial support and so much more. However, as I prepare for the journey of the next months, I know I will be ever more reliant on you.

Here is where I am, currently. As many of you know I have lived very humbly for the last 10 years, since retiring from IBM and corporate America in 2009. Decent investments and a modest lifestyle have allowed me to live the lifestyle I have desired, focusing my energies on my internal world, meditation, relationships, sexuality, yoga and small communities. I earned very little, I kept expenses low and used savings as-needed. I lived in monasteries, in bungalows and friends’ basements along the way. I cashed in many hard in frequent flyer miles to cover those transoceanic flights.

At the start of 2020 I started looking for work – for two reasons. One, I decided I needed to include more routine and human connection into my life. And two, my savings account is steadily approaching zero as the expenses related to living in the U.S. accelerate. Working is not an option right now, for several reasons. Primarily because remaining unemployed enables me to continue use Medicaid insurance for my cancer treatment. As far as costs go, I never see a bill, but my understanding is that the sticker price for all the diagnostics and 6-cycle chemotherapy is between $300,000 – $400,000. I am grateful every single day that I am receiving this benefit from the government, and more fundamentally to YOU (everyone currently paying taxes in the US – Medicaid is funded 50/50 from state & federal funds). There are many individuals out there today making decisions about whether to pursue treatment or to feed their families. I cannot imagine the immensity of this struggle. All of this to say that I do recognize my fortunateness, my privilege and luck in this situation.

Finally, as I spoke about in my Two Hearts post last month, something I have been overlooking, despite being a warm and kind being, very capable of love and care, is in fact my inability to receive that very same love and care from others and the world. To deeply, fully, profoundly receive it. Therefore, with deep humbleness I ask for your continued support and love throughout this healing journey.

Here is how to help:

1. Meals and Groceries:

My wonderful friend Nikki has organized a meal train that has had a group of committed friends dropping of wonderful meals and snacks each day. Some people are cooking, others are ordering takeout from local restaurants. I worry that this small group may need extra support during my 5 months of treatment. If you live around Boulder and like cooking, please consider signing up! Also, it costs about $25 for a good, healthy meal to be delivered from a local restaurant, so if you live far away and still want to support me in this, please see option #5 on how to send $ to buy a meal.

This is the link to the meal train: https://www.mealtrain.com/trains/z1q9eo

2. Complementary and Alternative Care:

As I move through the process of chemotherapy, it is critical that I support it with alternative healing modalities like massage, acupuncture, supplements, etc. Due to coronavirus, the oncological clinic I was visiting has closed down and I am seeking outside and much more expensive support. Throughout these months I plan to visit integrated, holistic healers and doctors, which will not be covered by insurance. As I move towards the end of my treatment in June/July, I will prepare for a series of detoxes and alternative healing to fully support and quicken my recovery.

3. Local Support (Rides and Errands):

If you live in Boulder and can support me by running errands like grocery shopping, picking up prescriptions, or potentially giving me rides to the healing center for my treatments, please let me know and share your mobile # with me. My friend Mary Kathryn has organized a text-message group for exactly this purpose.

4. Mail:

I absolutely love receiving things in the mail – cards, photographs, flowers, snacks, boxes, postcards from around the world. Anyone who sends me a wig or a hat I promise to wear it and send you some pictures.

If you have the time and inclination to send anything to me, you can trust that this will absolutely brighten my day in an instant! My address is:

Keith McGuinnes

410 S 38th St.

Boulder, CO 80305

U.S.A.

5. Financial Support:

If you have the desire to support #1 or #2, or wish to send financial support for me to use on anything in my process, please consider sending your support via PayPal or Venmo. Amazon gift cards are also very helpful. If you are specifically sending money for a meal or acupuncture or anything specific, please say so in the notes and I will apply it appropriately!

Venmo App : @Keith-McGuinnes (last 4 digits 6417)

https://venmo.com/Keith-McGuinnes

PayPal Transfer:  paypal.me/KeithMcGuinnes

(Be sure to choose a friends & family transfer – otherwise Paypal deducts a 5% fee if you choose Donation or Paying for Goods or Service)

E-mail Address: kmcguinnes@gmail.com

6. Love, Support, Blessing, & Prayers:

Most importantly of all I ask you to continue to keep me in your thoughts, to continue sending healing energy my way. If you pray or meditate regularly, please include me in these. If you have an altar and can offer a candle or a flower to your higher power on behalf of my healing, please do.

And please continue to shower me with supportive WhatsApp, Facebook and E-mail messages. I love receiving photographs, music, poems, and anything else inspirational.

With Love and Gratitude,
Keith

Bowing

Wave Follows Wave

Last week I wrote rather optimistically that my blood counts were high and this didn’t place me in any sort of immunocompromised position. Well, it seems like that was a false-positive of sorts. Last Friday, my next blood test put me, for the first time, in immunocompromised territory. I’m learning as I go – the high result on Tuesday was expected from the G-CSF shot I spoke about last week, but it is a false positive as these white blood cells are just being created and not yet in full service of the immune system.

This second cycle of chemotherapy gave me a better sense of what’s ahead than the first round. In each three week cycle(one week chemo, two weeks off), during the second week my cells continue to die and decrease towards a low point commonly referred to as nadir, about 7-10 days after the chemotherapy treatment. Most people who have been through this describe it as the time when fatigue is at its highest and side effects at their worst. It’s also the time I need to be super careful with exposure to any bacteria or virus as my body simply isn’t prepared to fight it off these invaders. After chemotherapy, for some, their immune systems remain compromised for years or the rest of their lives.  For others (and I hope to be in this category), they bounce back to a healthy or even stronger immunity.

With that news, and already low energy, I went very low emotionally last weekend. Numb, not quite depressed. I had a few visits planned, and in general have had the option of company when friends deliver my dinner. I had to really think about the value of that human connection versus the risk of infection at this time. I grumbled and whined internally for a while as I wrestled with the choice, but in the end its an easy one given my medical status. In this life, I’ve done five 100-day Zen retreats, walked alone across the state of Colorado in 2005 and a few years ago spent 3 months alone in a cabin in the mountains. Living in my basement alone for a couple of months isn’t really so bad!

Therefore I will be mostly isolating myself. Ironically Boulder decreed a stay at home order effective today. I will take solace with everyone else in my isolation! I’ve also made the decision to wear an N95 mask if I go anywhere in public- which has caused an interesting experience and reflection for me.

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As I am (and have always had) difficulty trusting the media and government, I looked into the mask issue myself. The surgeon general, CDC and media was and (still is) telling Americans that unless one is sick, mask wearing is not effective for the average person and may even make them more prone to infection if wearing masks incorrectly. I hate to say this, but that is just blatant disinformation. I fully understand and agree that the majority of our masks need to be reserved for doctors and nurses. HOWEVER, the government should have told us the truth – masks DO work to prevent transmission and infection, yet we do not have enough of them because of poor planning, incompetency, etc., and therefore we need to save the ones we do have for healthcare workers who are the soldiers in this ‘war on coronavirus’.

Last week when I went to the healing center, I was the only person (patients or staff) wearing a mask. Today all the staff and some patients had masks. I was glad to see this change. What I also noticed in the few public things I needed to do last week, a very strange energy from those that I interacted with (outside the healing center). This comes from the fact that in our society, mask wearing is generally reserved only for the sick. And when one is wearing one, I think it can evoke a feeling of disgust or fear in the observer. Hopefully this will change – watch any video that shows the subway or airport or crowded place in South Korea- 90%+ of individuals have their face covered. This was one factor of several of them being the one western country to turn the corner on coronavirus without severe impingements on human movement and their economy.

And yes, even cotton masks are better than nothing. They bring awareness to our face and prevent us from touching it. We have some kind of primal instinct that has most of us touching our face 23 times a minute unless we retrain ourselves. Let’s retrain ourselves and normalize mask wearing in times of pandemic!

OK Public service announcement over!

Here is some research on homemade masks.:

https://www.researchgate.net/publication/258525804_Testing_the_Efficacy_of_Homemade_Masks_Would_They_Protect_in_an_Influenza_Pandemic

OBJECTIVE:

This study examined homemade masks as an alternative to commercial face masks.

METHODS:

Several household materials were evaluated for the capacity to block bacterial and viral aerosols. Twenty-one healthy volunteers made their own face masks from cotton t-shirts; the masks were then tested for fit. The number of microorganisms isolated from coughs of healthy volunteers wearing their homemade mask, a surgical mask, or no mask was compared using several air-sampling techniques.

RESULTS:

The median-fit factor of the homemade masks was one-half that of the surgical masks. Both masks significantly reduced the number of microorganisms expelled by volunteers, although the surgical mask was 3 times more effective in blocking transmission than the homemade mask.

CONCLUSION:

Our findings suggest that a homemade mask should only be considered as a last resort to prevent droplet transmission from infected individuals, but it would be better than no protection

Spring Equinox Meditation–TONIGHT

Hi All – I’ll be hosting a synchronized spring equinox meditation this evening. Join for all or part of it if you can!

This is an auspicious time and day in which our intentions and wishes that were planted and have been germinating within the previous season have the potential to burst forth in wild, optimistic color. Let’s dedicate this meditation to the healing and wellbeing of the planet and all beings.

Find somewhere to sit quietly with distractions set aside. This can even be done in bed (as you’ll see it’s very late/early in many time zones). Meditate however you wish, connecting first to yourself, then to each other, eventually to the entire planet. ‘See’ you there.

The exact moment of the equinox is 21:49 on March 19th in Colorado, so the meditation will be from:

21:25 to 22:13 MST

A few other time zones:

March 19

20:25 – 21:13 PST

22:25 – 23:13 CST

23:25 – 00:13 EST

March 20

4:24 – 5:13 (Europe)

5:25 – 6:13 (Israel)

10:25 – 11:13 (Thailand)

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Basement Musings

It has been a challenging few days since my last update. Today my big adventure was getting out to the backyard to enjoy a few minutes of sun. Monday was a low point as I even had difficulty walking. I took a short walk to the park and was in so much pain I considered calling my housemate to come pick me up. I eventually limped home, tears of frustration hiding behind my sunglasses. This was a very humbling experience, and a reminder of the long road ahead.

The silver lining to this pain is that it is due to to a process of growing new white blood cells. I get sent home from my last day of chemotherapy with a patch on my arm that injects me with a drug called Neulasta, 27 hours later. This drug is a granulate colony stimulating factor (g-csf) which kicks off a process of growing white blood cells in my bone marrow. The terrible side effect is bone pain. And it is really terrible. Just out of fascination I googled the cost of this shot and its a whopping $6,231 per dose!  That is an extremely expensive way to get yourself destroyed for a few days… It’s hard to describe this pain – its all pervasive and as deep as it gets. Our skull even has a thin layer of bone marrow which I could literally feel pulsating at night as I tried to manage the severe headaches. As I write this I can say the worst is over and I’m optimistic that I will continue to feel better as I approach my next cycle in a week and a half.

My bloodwork yesterday showed that I have a white blood cell count of nearly 13,000 uL, while the normal adult range is 4 to 9,000. This is good news when it comes to my immune system dealing with foreign bacteria and viruses – meaning I am not currently immunocompromised and at high risk of COVID-19 complications despite being on chemotherapy. Obviously I am taking extra precautions, as contracting COVID or any illness right now has the potential to complicate or delay my treatments.

I want to thank everyone for the continued flow of support, check-ins and love that is coming my way. Despite the pandemic requiring many people to focus on their immediate circumstances, I have not been forgotten! And I have to say, receiving things in the mail is especially nice during such a time. I received a box of love and chocolate all the way from Switzerland today along with a few beautiful cards. The meal-train continues to be so helpful and nourishing for body and spirit.

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Corona Brain Syndrome

As I attempted a short walk today I was contemplating the overload of information that has poured into me these recent days. I’m calling it corona brain syndrome (or CBS). Many people are writing about the different opportunities that are coming with this pandemic such as slowing down, getting outside, spending time more with family, and getting in shape. Do you really need a pandemic for this? I applaud the people who are on the optimistic side of this thing. Yet there is an even more fundamental opportunity here – to deeply examine long held patterns and beliefs around attachment, health, self and other. I hope to use CBS over the coming days and weeks to explore these themes for myself.

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Today I was contemplating the difficult choices that governments and individuals are making and the trade offs between these choices. In today’s news that ranges from lock it all down to live life as you always have and everywhere in between. Only time will tell who made the best choices with the limited information we have. We will analyze our individual and political choices for years to come. YET, what I am asking now is slightly more subtle: Wherever we fall on this lock down / isolation spectrum, WHAT is it that we are protecting, saving, etc. though the locking down, isolating or quarantining? 

I think the default, unexamined answer is simply physical life. Being alive is assumed to be better than dying or being dead. I agree with this, most of the time! However, is this physical organism really the most important thing to protect? It’s an old question that our illness and death-averse society has avoided for a long time. Now I’m not arguing against the plans of those who can stay home alone or with their families for a week or two. This seems like a prudent, wise choice right now, one that is rather selfless and in the interest of the greater good. On the other side, I have one friend who advocates for letting the elderly and immunocompromised fare for themselves- Darwinian warfare!

But what if, our government’s decree that we need to isolate for a month, for two, for four…  Let’s assume in a perfect world we didn’t have to consider financial concerns and this was possible for everyone. Then we might have to ask ourselves what does it mean to be alive – is breathing and eating and procreating enough? Or might we need some meaning in our lives? Let’s not wait until we are forced to ask this question. I will leave you with a hypothetical choice to grok:  You have a near-death experience and and your guide at the end of the tunnel tells you that it’s not your time yet, you need to go back to the world but you have a couple of choices for your remaining time:

      CHOICE 1:  5 years of life, healthy, routine, unexciting.

      CHOICE 2:  1 month of life, also rather routine and unexciting – but touched by one very particular moment of ecstasy – be it falling in love, seeing the divine, experiencing a union with cosmos.

I’m not sure if this is a fair question – but your answer may say a lot about your current state of mind!

Tumor Dissolution – Cycle 2

I noticed a calling to start this post as Keith versus cancer or something – just for a a catchy title. The truth is there is no versus in any of this. Its much more with, a going-along, through, touching or meeting. Much of my practice related to this health crisis has been reframing my language and mentality on how I am in fact embracing this challenge. All too commonly do I see terms like beating, destroying killing, cancer. There is a battle aspect to this journey, obviously, but it is the inner battle of the warrior meeting a challenge. And I see this playing out in the world now. A virus is threatening the destruction of modern civilization. YET not from a standpoint that it has the ability to physically kill and remove its host(ALL of us!), as cancer does. But what it can do is destroy our reason, our calm or inner health and attitude. I am in an interesting position, in that for the better part of six weeks I went through an intense period of unknowing with the state of my own bodymind. And now I observe it playing out on a global scale. More on this later, I personally am saturated by the news, and need a break.

It’s Saturday morning and I wake up in good spirits and am well rested. 2 hours of predawn meditation dedicated to calming the storm in the hearts and minds of those in the world brought me great relaxation. My chemo pack was disconnected yesterday and what remains from this cycle is a box on my left arm that will inject me with white-blood cell booster juice around 5pm. A famous Zen teacher says that not knowing is nearest, meaning its best to just keep open and free and accepting to the present moment. I must delicately contradict this great sage when it comes to multiple cycles of chemotherapy!

As I’ve previously mentioned, I plan to undergo 6 cycles of 3 weeks (18 weeks total). In each cycle, the first week I receive treatment for 6 days, then I have 15 days to rest and recover. This time around, the ease of knowing what to expect was an incredible advantage over the anxiety and uncertainty of all the unknowns associated with chemotherapy. My father and sister joined me the first day for my longer Monday treatment. I knew all of the oncology nurses and the protocols that I would be submitted to throughout the day. Dad has mastered his way around town which consists of trips between Home Depot and Sprouts for my organic veggie juice ingredients (he is quickly learning to differentiate between varieties of kale and the subtle nuances of regional mangos and avocados!)

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The major insomnia I dealt with three weeks ago was under much better control this week. I struggled on Monday and Tuesday to get to sleep before 4am, but the rest of the week I slept well. And speaking of reframing, rather than resist the insomnia as a problem, I simply accepted that when on a massive dose of steroids, one just needs less sleep! Monday and Tuesday evenings I enjoyed leaving some loopy WhatsApp voicemail messages to a number of friends – sorry if you had to listen to one of those!

Today I will relax at home with Dad for one more day, try to rest and prepare for the next days – in Cycle 1 it was the 3-4 days after the treatment week that were the most difficult to get through.

Many of you are offering to provide things above and beyond for me in this time and I continue to be extremely grateful! My meal train has been supporting me sooooo well and I am humbled by all of the supportive messages and love coming my way each day. I am not alone. We are not alone.

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