My Journey Through Cancer – XIII – Stockholm Syndrome?

•July 22, 2018 • 2 Comments

stock1Suddenly it is over… suddenly there is that last day of readiness, the last necessity of an empty bowel and full bladder at exactly right time, the last whining of the radiation machine, circumscribing its rays of high energy. No more anxious waiting after the initial imaging… in the silence directly following those first “clicks”, with the red flashes of the red warning light, alerting of the presence of X-rays, wondering whether the machine would then move into its start position, to start delivering its circle of radiation or whether a technician would come out to say that my bowels were not empty enough or my bladder not full enough. That happened only once out of the 38 times, luckily. Still, the anxiety is there, every single time. And now it is over, done, finished! I do not miss the Machine, I miss my buddies, my cheer leaders! Stockholm Syndrome? There may be a certain level of Stockholm Syndrome here, but it is good to contemplate the meaning of captor here. Could it be that it is really me, specifically my mind, who is the true captor here? Not an uncommon scenario, where you get captivated by the stories that your mind comes up with. By empowering the stories, we disempower ourselves.

Now it is time to embrace the start of a new chapter, one that started a couple of weeks ago, when I met with my medical oncologist, at the end of my entire treatment. Radiation therapy ended about two months ago, and now the hormone treatment ended! All blood work looks splendiferous! “Soon you will be your old self again”, which may sound great, but that is not my aspiration. My oldFire Fancies - Arthur Hacker self had cancer. I am working towards healing into a New Self! It’s good to have an aspiration, an intention, a goal to work towards. Just like with pretty much anything else, it is a journey. I guess at this point, I could rename this series “My Journey After Cancer Therapy“. There is definitely a celebratory aspect to this journey, but if you were to ask me to list one single word for what is the most viscerally and emotionally present in my life, right now, it is fatigue, very closely followed by gratitude. Fatigue started growing during my last week of radiation therapy, but seems now even more intense as it was back then. It turns out, I’m not alone in this. Information provided by my friends at Dana-Farber Cancer Institute says: “Researchers are still learning about what may cause fatigue after treatment.” Similar information can be found on the Mayo Clinic website: “Your cancer fatigue may occur episodically and last just a short while, or it may last for several months after you complete treatment.” The most insightful is this talk by Dr William Breitbart (Memorial Sloan Kettering Cancer Center). I think he gave this talk 7 years ago, and even though it looks like so much more is available treatment-wise (at least from what I have seen at Dana-Farber), I get the impression that attitude among oncologists has not changed drastically. Patient initiative still seems to be playing a major role here, in terms of getting the right attention. Of course, I’m saying this based on the extremely small sample of my own experience! This fatigue is different from feeling tired after a long drive, pulling an all-nighter or an intense day at work; this fatigue feels systemic or even cellular or atomic. It expresses itself physiologically, systemically and emotionally. The Silence of the Woods - Arnold BöcklinIt’s there, it’s real and it has noticeable impact. Dealing with it is part of my new Journey, starting with acknowledging that it is there and act accordingly. There is no road to the New Self that goes around the Valley of Fatigue.

This is a time of arriving. Arriving in every moment, every day. If I arrive feeling fatigued, that just the way the cards are dealt at that moment; pretending that the situation is otherwise won’t do me any good, or anybody else for that matter. Actually, right now it is a time of learning to arrive and be as I am in the moment of arrival, especially if I don’t happen to like the arrival. So, I’m learning, learning to arrive. I feel deeply comforted by David Whyte’s poem The Journey. The poem feels like the Universe reaching out and sending compassion.

 

 

Advertisements

My Journey Through Cancer – XII – Carry Gracefully, Mindfully

•May 24, 2018 • 7 Comments

52943365Some things cannot be fixed. But they can be carried“. That is a great observation in a powerful book I’m currently reading: It’s OK That You’re Not OK: Meeting Grief and Loss in a Culture That Doesn’t Understand – by Megan Devine.  Grief enters life in so many different forms or disguises, at different times. Obviously we grief when we process the death of a loved one. However, grief also touches your life when we process the impact of other traumatic experiences, like dealing with a chronic illness. To me, in this case, it feels like grieving the loss of a certain quality or aspect of life. Not “quality” in the sense of how well something is made, but how one musical scale resonates differently from another, or how we react to certain colors. It is something ethereal. When I had surgery, 3 years ago, it was a traumatic experience, but the “quality” of the experience was different. This time I have a feeling that it is the combination of the cancer relapse and the character and duration of the treatment that makes me feel touched more deeply and profoundly. Now I truly feel like a “cancer survivor“.

So, I’m grieving. I’m trying to reconnect with “normal life”, get back into the “swing of things”, but in a mindful way, gracefully. I cannot have this experience, this journey be like coming home after walking through a rain storm and letting my rain coat dry in the mud room and be done. I have to honor the experience and acknowledge how it has Elizabeth Stanhope Forbes - The Leaftouched my being. Just like how it is not OK to say to a grieving person “he died doing something he loved”, “they’re in a better place now” or “this will make you a better person in the end”, I feel that you are doing yourself a disservice, or even harm by not giving yourself permission to grief and process. So, that is what I am doing!

disks_psThis is also why I feel that me pulling the Princess of Disks card is so wonderfully appropriate. To me, even purely from a Rorschach-like point of view, the Princess of Disks represents “warrior” energy; that is, “warrior” in the sense of the Buddhist principle of Bodhisattva. That energy to me is very much present in my experience of identifying myself as a “cancer survivor”. How do you keep your heart open, and tender, having gone through an experience that has touched you, and is still touching you, so deeply? How do you do that in a world, a culture, that finds it challenging to acknowledge grief and be with it gracefully and mindfully? How do you keep yourself from clinging to the [few] sources of comfort you encounter or even your grief, for that matter? How do you let go, when the time is there to do so? Big questions! However, also, in many aspects, everyday down-to-Earth type of questions. What do you do when people don’t reach out, not even with a “thinking of you” message?  Having a chronic illness, lost a loved one or whatever the source of your grief is, is difficult enough as it is. Having a feeling of being “invisible” or carrying a “big secret” is an additional layer of challenge. Loneliness has an impact on our lives under normal circumstances, and even more so when you’re dealing with big emotions. A simple acknowledgement can have a big impact on the quality of your day. When somebody asked me, earlier this year, the standard “how are you?” question, part of me wanted to answer with something along the lines of “pretty good, apart of my cancer relapse and radiation therapy“. It’s something you simply don’t do, probably a consequence of the subtitle of the book I mentioned at the beginning: Meeting Grief and Loss in a Culture That Doesn’t Understand. It totally brings me back to being at my dad’s funeral, as a twenty-something. Would the pain have been any less or would I have grieved for a shorter amount of time? Not very likely. It may have had an impact on the quality of my grief, in a positive sense. Some cultures have greetings that mean something close to “I see you“, we Westerners do not, or at least not so explicitly and spontaneously. It feels good to be seen, especially in difficult times. So, a heart-felt Thank You to everybody who left a comment or a “like” at any of my blog entries!

My Journey Through Cancer – XI – Α/Ω

•May 7, 2018 • 2 Comments

invasion_of_body_snatchers_1956_poster_02It’s done! The last radiation therapy session came and went! In Dana-Farber style, it did not go by unnoticed. My team (every step of the way I felt I was part of a team) was beaming and smiling and when the final round of radiation was over, it was hugs all around! One of my oncology nurses even had a little ceremony to celebrate the closure. It moved me to the core, and it still does thinking back!

So why the Invasion of the Body Snatchers poster? That doesn’t sound festive at all! It represents the side-effects that have now caught up with me. It really is mostly the fatigue. The fatigue feels like being invaded by an alien life form, one that feeds on energy. If I exert myself too much, where the too much varies in unpredictable ways, I can suddenly feel an inertia build up, making doing anything feel cumbersome, like trying to walk through syrup. Unexpected? Not at all. It’s a common side-effect, in particular of the combination of hormone and radiation treatment. It will pass and it’s up to me to listen to the signals and honor them.

So, not much energy for lengthy observations and ponderings. Enough energy for a smidgin! Maybe the Α/Ω title is a wee bit dramatic… call it poetic license! When I was considering my radiation journey, yesterday, I was looking at it from a End/Start point of view. An intense journey has ended, and a new period has started. But the closure and opening energies work on many more levels. How many and which ones? That’s the theme and subject of my pondering! But, being who I am, I couldn’t do that without consulting my friends the Tarot cards! Given my puny energy levels yesterday, the spread was simple: draw one card to represent End and another to represent Start. I shuffled a bunch of times and took the bottom card to represent End (left, below), the top one to represent Start (right, below).

How very appropriate! was my gut feeling. The very first words that came to my mind were “gift of insight” for the End card (left), and “something’s brewing” for the Start card (right). The whole experience has been one of empowerment and teaching, and that is what I see reflected in these cards. Apart from that, these are two just beautiful images in and by themselves. I also thought it was interesting to see the suit of Wands for the Start card, the suit of Fire (soul, primal energy, spirituality, inspiration, intuition). I have some journaling to do here! Last, but not least… having greeted my friends, the cards, again, after a long period of having been apart, the very first Tarot card I ever drew sprang to mind, clearly and brightly: the Princess of Disks. Another layer to go into the journaling journey! To be continued…

disks_ps

 

My Journey Through Cancer – X – Yes!

•May 3, 2018 • 2 Comments

IMG_4725The grid on the fridge says it all… tomorrow will be the last radiation therapy session! I’m definitely feeling the influence of the 37 preceding ones, mostly in the form of fatigue. Tomorrow the radiation journey ends and I get my life back! That’s pretty much all I can muster up for now… ready for the weekend and doing restorative things!

My Journey Through Cancer – IX – Mezzo Mezzo

•April 9, 2018 • 2 Comments

IMG_4702Today was my 19th radiation therapy session… I’m half way! I made this little, colorful grid, to mark my progress. It’s hanging on our fridge, held up by inspirational magnets. My radiation oncologist is happy with how things are progressing and I’m pleasantly surprised by how well I feel. Mind you, I’m working hard on upholding my part of the “bargain”…. I walk on average 4 miles per day and eat mindfully. I meditate everyday for about 10 minutes and I try to be present with everything I do during the day. No alcohol. OK, so I cheated last weekend… I had a glass of wine when we had Easter dinner with friends, and a mimosa. Bite me! 🙂 With input from the nutritionist, I have been able to create the perfect breakfast for me, to start the day with the right foundation: a smoothie made of sugar-free coconut milk (I’ve used hemp milk too), a cup of fresh fruit (blackberries, blueberries, raspberries and strawberries), two tablespoons of either ground chia or flax seeds, half a avocado and one serving of the Garden of Life “Raw Organic Meal Shake & Meal Replacement”. Sometimes I add some fresh orange or pomegranate juice. Adding pineapple adds a fun element of zing. In volume, the smoothie measures about 30 fl oz. Throughout the day I drink about 80 to 100 fl oz of water. Together with a light lunch and a normal dinner, it all amounts to a perfectly balanced diet. At least, for me. I also get acupuncture, once a week, for one hour. Having done acupuncture for over 3 years now, I can feel the difference when I’m lying on the treatment table, all needled up. I can feel the energy flow.

It is also important to me to wear something uplifting. Either color or mIMG_4700essage-wise. I got this great t-shirt from Life is Good. In general, I like their philosophy, but their merchandise is great and of really good quality. The shirt says “The Art of Optimism” and “We See It When We Believe It“. That’s me! One of the nurse practitioners complimented me on the shirt! It’s all about immersing yourself in positive energy… I guess the Buddhists would call it right attitude, right thought, right mindfulness,… in short, The Eightfold Path. For me, it is where the rubber hits the road. I now get to reap the fruits of my mindfulness practice. This doesn’t mean that I won’t have challenging moments or that everyday will be like dancing over mountain meadows like the Von Trapps.

Screen Shot 2018-04-08 at 6.28.08 PMThere is one other thing I do every day: brain gymnastics! Back in January, when I started my treatment, looking at all the potential side-effects, I realized that they could have an impact on my cognitive functioning. How do you keep track of that? It would be pretty hard without any objective measure to get an unbiased feel how things are evolving. That’s when the idea of games or tests occurred to me. If I do the same test(s) most days, I should get at least a somewhat accurate indication of changes. I figured I’d had to test myself on mental agility and acuity. The medium was obvious: it had to be available on my iPhone. After some research, I found the perfect candidate: Elevate! It says on their website: “Elevate is a new type of cognitive training tool designed to build communication and analytical skills.” I can say from experience, after having used it for about 4 months, that I think their claim is accurate. My goal for using it is perhaps not their intended one, but I’m sure they’ll forgive me 🙂 Every day I get a set of recommended tests, some of them focus more on agility, and some more on acuity, just what I wanted! Results? I can totally see that the treatment has had impact on my agility. Even this far into my treatment, and with my agility somewhat down, I’m still able to get high scores for tests that are more focused on acuity, especially math. I think there is also a support effect going into the other direction. By forcing myself to do these daily tests, I activate my brain, preventing it from wandering off into brain fog land.

215312_1892997320580_1697799_nThis is in a nutshell what I have been doing to support myself, to help me to stay “me” and to help my body in its healing process. I’m also extremely fortunate to have a loving and supportive spouse! She inspires me to walk this journey with my eyes open and to be present with what I encounter on this path. I would lost without her! Not having to walk the healing path alone is just as essential to the healing process as the medical treatment. The love and support of friends and family is a huge help too. I’m so lucky to have awesome friends! And then there are the doctors, nurses, therapists and technicians at Dana-Farber… I know I have mentioned this before… these people inspire me and every time I’m there, I feel well taken care of on a deep level. So much to be so grateful for!

 

My Journey Through Cancer – “Commercial Break”

•March 15, 2018 • 1 Comment

I have started my radiation therapy… more about that later. For now just two images. The machine I have dates with every weekday… not exactly this one, but one just like it.

VarianTrueBeam

And there is this:

tattoo

source: https://xkcd.com/933/

Yes, I have some tattoos, three dots in total. More later…

 

 

My Journey Through Cancer – XIII – Start of the Next Chapter

•January 16, 2018 • 1 Comment

PETCT-scanner.jpgI received good news, leading up to the next chapter: the PET/CT scan came out “negative”, meaning that no tracer accumulations were found. Since this was the most accurate scan available, it is the best possible news with regards to the question of potential spread. In other words, if cancer cells did spread, their concentration is below the detection limit. How was the experience? This time I decided to take care of myself and told the imaging people about my claustrophobia. Solution: they gave me a prescription for Lorazepam. Result? It didn’t do much for me! Next time I’ll ask for a higher dose! I managed to get through the experience without hitting the panic button, though, thanks to breathing and my meditation practice!

The Silence of the Woods - Arnold BöcklinToday my next chapter started: I got my Lupron injection and androgen deprivation pills. It was a long afternoon of mostly waiting. First blood work, followed by a meeting with members of my team (it feels so wonderful to have a “team”) and the glorious injection, and ending with waiting at the pharmacy for my pills. It was a sobering thought looking around at all the people waiting for appointments…. they all must be dealing with cancer, one way or another… why else would they be at Dana-Farber? The blood work results were ready while I was waiting for my next appointment. “Something amazing happened…. your PSA is undetectable again! You’re cured and free to go! Watch out for that unicorn behind you!“… yeah, right… maybe in Hollywood or LaLa Land! The reality was that my PSA level was higher again than earlier this month, roughly increased with the same velocity. All of this is very real. But I’m ready to walk the walk and talk the talk, and be with this next chapter, guided by the thoughts I wrote down in my previous blog.