Is cancer a gift or a battle?

This short blog post on NPR (National Public Radio), Is Cancer a Gift?  was interesting. In case you can't access it, I pasted it at the end of this post. It's about a reaction to being told that cancer is a gift.

Communication is a sensitive thing, I suppose for everyone. How much more difficult when fear or grief, or just vague discomfort, are involved.

Perhaps earlier, more inspired phases of this blog would have driven the woman who wrote that article crazy. I don't feel that cancer is giving me a lot of gifts now, although from a certain point of view...whatever life doles out is a gift, or at least that's a more useful way to look at it, when possible, than the alternative. I guess this assumes there is some potential value in human experience, in whatever it delivers. I think of this as roughly equivalent in other religions who strive to live with 'God's will.'

Which is the opposite of a fight, or a battle, the popular language these days in talking about disease. One model is rather more passive, or receptive. The other is, I am an agent of my own destiny, I shall think positively. Cancer and I are engaged in mortal combat, and I shall conquer it (and then if I do not, I will have failed.)

Telling someone how they should see things is a problem. The point I suppose is to learn how to be truly sensitive to other people, without our own views or advice getting in the way. It is not easy to do. It reminds me of a Buddhist teacher who said something like, The greatest gift we can give is to be less of a problem to our friends by understanding ourselves.

I will write more about how I am in another post.



By BARBARA J. KING

Originally published on Thu July 25, 2013 4:02 pm

There's a gift in cancer. It says so right on page 203 of Greg Anderson's book Cancer: 50 Essential Things to Do (2013 edition; first published 1993). Anderson quotes the singer Olivia Newton-John as saying this about her "journey through breast cancer": "I see it [cancer] as a gift. I know it sounds strange. But I don't think I would have grown in the areas I did without this experience."

Then Anderson urges his readers to "Seek the gift in cancer. It's there."

Anderson's way of putting things is no fluke; the cancer-as-gift trope is all too popular. Mark McKinnon used it in writing for The Daily Beast, and Barbara Ehrenreich reports (but does not buy into) other examples over at The Guardian.

In the two-and-a-half months since my diagnosis of a rare form of uterine cancer, I've not succeeded in locating any gift in cancer. I have discovered that, with the steadfast love and support of family and friends, I can deal with the effects of extensive surgery and of chemotherapy, ranging from discomfort related to the removal of various bodily structures including 29 lymph nodes and intense pain in muscles and bones that follows (for some people) an infusion of carboplatin and taxol drugs, to fatigue and oral thrush. It's hard work, this recovery.

But maybe the gift is yet in hiding and will appear sometime in the next six months as the chemotherapy regime and, later, radiation continues?

I don't think so. And let me clarify one thing: The hundred ways, large and small, that I'm shown logistical and emotional support from those who care about me is because of the generosity of the people in my life. In no way does cancer get the credit for that.

Ehrenreich is one of my guides on this topic. She concludes her essay on "the bad science of positive thinking" this way:

"Breast cancer, I can now report, did not make me prettier or stronger, more feminine or spiritual. What it gave me, if you want to call this a 'gift,' was a very personal, agonizing encounter with an ideological force in American culture that I had not been aware of before — one that encourages us to deny reality, submit cheerfully to misfortune and blame only ourselves for our fate."

Another of my guides is Lisa Bonchek Adams. Adams, also a writer, and a person with stage IV metastatic breast cancer, is a friend of mine — although we know each other through social media only, she is a friend nonetheless. On cancer-as-a-gift, she writes in a blog post something that resonated with me:

"A gift is something you want to share. 

"Something you want to give to someone else. 

"Something [about which] you say 'Next time I need to give a special gift to show someone I care, this is what I want to give.' 

"Cancer is not that thing. 

"Language matters. 

"The words we use to describe illness, death, and emotion are important — we should choose them carefully."

How right Adams is: Language matters.

Anderson, in Cancer: 50 Essential Things to Do, urges patients to "reframe" their disease and see it as "an inspiring challenge rather than a threat." He also suggests some affirmations for the patient, ranging from I am filled with hope to This is going to turn out perfectly and I am in charge of my cancer.

It's no gift to suggest these last two affirmations to people with cancer.

There is no gift in cancer.

Somewhat stream of consciousness

Padmadharini, Singhashri, Hridayashri, myself

I haven't written an update in a week or so, so this may be somewhat patchy. Actually I have been writing a bit, but mostly thinking about it more than doing it.

I'm finding it harder to describe my experience. Partly maybe because I'm talking much of the day. Not that that wears me out, but I am spending much less time alone than I used to, by necessity. There are so few things I can manage on my own these days, and that seems to change a bit every day. For example, a few days ago I thought my stamina was improving, I was able to walk a bit further. I was able to take a shower standing up. The last two days though it's gone the other direction. After taking maybe ten steps and I lie on my bed panting and wheezing for a few minutes, then I feel fine. Sometimes I cough a lot or hardly at all, or I have energy one day (relatively speaking) and the next day I have next to none.

Various people have suggested getting oxygen. It might not help but I will bring it up with the nurse Mary Jo next week. She mentioned last week that "young people" such as myself (I'm 49, i don't think of myself as particularly young, but I am a young cancer patient) tend to live beyond the 6 months estimated once someone is in hospice.

I've never moved my body so little. I've lost muscle tone. My skin is different. My body feels like a different body. Generally, my feet are cold, and my head and neck are warm. If I put the heating pad on my feet, it will feel good for a while, then my upper body starts to sweat. Mary Jo said many cancer patients have temperature regulation issues, so it's not hormonal as I thought. I have written for so long that I have no actual cancer symptoms, that all my symptoms were from treatment. Of course that has changed.

I woke up yesterday morning wheezing with my sacrum throbbing in pain. Before that I had been spared dealing with the shortness of breath at night. I tried some of the sublingual morphine. It wasn't dopey like I expected, actually rather mild. Dealing with shortness of breath is the most deeply unpleasant thing I have had to deal with on this journey. It brings up an instant feeling of panic in my body. Moving slower and sitting down when I have to walk more than a few steps helps, but after a lifetime of zooming around it's a hard adjustment to make.

Saw Misha for acupuncture last week (felt great), and my bed got sorted out, and have a wheelchair now, too. Still have little desire to go outside. In fact, I don't have much desire in terms of doing things. Mainly I want to avoid the newfound challenges inherent in stepping outside this apartment. I thought I might be more adventurous. Not at all.

Laura, Jules, Lisa

My three sisters were here from the four corners. That was good. They are all super sweet. I gave them all my old drawings (most are dated 1979 or 1982) which was a relief to me but seemed to make everyone else sad. Laura's going to stay for another while and at the end of this week, bring my mom up from southern California for a day or two. Also help me finish some paperwork.

Apparently email updates about me are going out now and then. I don't usually see them or know who they go to. It was pretty amusing when my sisters would attempt to pronounce the name of someone who replied - it would remain a mystery until I asked for spelling. 

You can also email me directly, though I may not have the energy to reply.  

Hospice first impressions/The girl with the temporary dragon tattoo

Met with some of the hospice folks this week - an intake person and a social worker. They are super cool people. Here the focus changes to keeping one relatively happy and comfy, rather than merely alive. Also, they come to me, which is AWESOME, and they're available on the phone 24/7. I'll meet the nurse on Monday or Tuesday.

Kaiser hospice provides various visitors and some kinds of equipment, but no...I don't know what to call them. Caregivers, aids, workers. In other words, the hospice nurse and some other people are going to visit and talk to me at specified intervals, once a week or whatever is decided, to help with medications/pain/any issues that arise, etc., but they're not going to stay for 5 hours and read me stories or administer morphine. (They can arrange this, which I would pay for.)

They delivered a hospital bed a few nights ago. It's small, looks and smells very hospitaly and plasticky. I didn't sleep that well on it 'cuz of this...layer that's on top of the mattress. It has these sort of pockets that fill with air...it's like lying on a carpet of hacky sacks. I deflated it a bit, we'll see. Being able to easily sit up in bed is great, which is why I wanted it.

Just got my feet rubbed by my niece Paris, and the catering around here has been excellent. Kathy has made spring rolls, spinach and ricotta ravioli, hummus plates, quesadillas...

I'm feeling that I have a little bit more stamina, meaning that I can stay vertical a little longer. My mouth seems not so dry. Perhaps much of what's gone on in the last few months really was radiation fatigue, rather than a sign that I have 8 toes in the grave.

Morning pills, hope the dye they use isn't carcinogenic...

Something to do. There's a moustache of normal hair
you can see the five o'clock shadow of on my neck.
Wonder when hair will grow back?

Kathy and Paris making way for new bed

Doctor visit

Jules and my sister Kathy and niece Paris came with me to see Dr. Nelson yesterday, wheeling me around in a wheelchair which helps a lot with the breathlessness I get from walking. Still, just getting dressed to go out continues to feel like a lot of work. I have to pace myself and I am learning how to do things more slowly, after a lifetime of zooming around.

Dr. Nelson was being very friendly. She actually made small talk for the first time ever. As we were leaving I was surprised to hear her say, "You're an amazing person." I'm not sure what she meant really but I'm glad she likes me.

We talked about palliative options. She gave me a load of cough stuff (syrup, Tylenol with codeine, and something else), to see if something can help. If it doesn't, some lung radiation (not Cyberknife) after a CT scan would be an option. Chemotherapy is off the menu. At the moment, I'm disinclined to do either.   

My appetite is back, and I am sleeping much less. The coughing bothers me, and some hip pain. The most disturbing thing is not being able to walk (I fear I repeat myself) or having to lie down so much of the time. Thinking back to my anagarika ceremony I see how exhaustion somehow reduced my personality to the bare minimum. I guess that was radiation fatigue.

Meeting the hospice lady today. (She had to reschedule to later because of the recent plane crash at SFO.)

I miss my retreat massages. If anyone knows a good masseuse who makes house calls, let me know!

Walking slow

I can't summarize the last two weeks, but maybe I can say a few things.

The retreat was wonderful. Because I got a chance to really take in my current physical situation, not to say predicament. And because my friends took excellent care of me there, brought me three meals a day, gave me massages, walked with me up to the shower with a chair so I could sit down to catch my breath every 15 steps or so. I have never been the object of so  much kindness before, as far as I can recollect. It takes some getting used to! It's so nice, too, to be in an environment again where the focus is on...well, existence really, one's own, and how one interacts with it. 

Right now breathing in sounds incredibly wheezy, like there are ghosts in my throat. Or sad elephants. 

Seeing Dr. Nelson Monday morning, and a hospice nurse Tuesday morning (here). 

My sister Kathy and my niece and nephew arrived tonight. 

Putting together Tania's massage table

On retreat

I'll be at Jikoji for the next week or two. July 6 is the latest I'll be back, could be sooner. Love to you all. 

What is being tired? What is being me?

Sweet sister Laura and Jon
who left for Fresno on the train yesterday

For the last few weeks I would get the idea, for example, to open, or close, the curtains in my room, which are about 10 feet away. Lying in my bed, I would think about it, off and on, for say an hour. Then I might decide not to, thinking it's really not worth the effort. Or I'd do it, and fall into bed afterwards, breathing heavily, to recover. I lay this out in some detail because I myself have a very hard time understanding 'the new tired'.

But, I don't feel that tired anymore. I can do a few things. I started taking 2 mg of dexamethazone (steroid) yesterday but I had more energy before that. I'm still lying down most of the day, but I'm not sleeping as much. You know what else takes energy that I never noticed before? Humor. That's when you know you're really sick. It's impossible to make a joke. I really enjoy making people laugh. Not being able to do much for myself and often not being able to make jokes, I can hardly recognize myself. 

People say I might be happier somewhere else, not cooped up in this room. But who's cooped up? Not me. I have everything I need here. Going outside is somewhat stressful. Going on retreat in a few days will be fine because once I get there I'll possibly do much the same thing (but in a prettier place, with help and meditation options.) 

How do I feel? A prisoner of my body, which is going to stop, and a certain level of acceptance of that. A lone polar bear swimming, scanning the horizon for land. Other people's sadness. Trying to get used to being a different person, or maybe just a different body. Eyes closed and a hand feeling around in a drawer for something lost. A clock. A future goodbye to myself. Taking off the hazmat suit. Looking at the ocean.

Here's me saying a little about why I became an anagarika. 

Dr. Nelson in the morning

I lost 4 lbs since I saw her last (around one week ago) which I was surprised by, because I've been eating a little more.

I caught a glimpse of the lung x-rays but did not manage to take a photo. They revealed that mets in my upper left lung lobe have caused it to collapse. Which is distressing but at least explains the shortness of breath and weariness. Apparently people can live with just one lung. At this point I have one and a half. 

The brain MRI was checking for 'disease progression' only, since an accurate scan can only happen 2-3 months after radiation. Some of the smaller mets are gone and the largest one has shrunk, but there is some swelling around it. She suggested taking a low dose of steroids to help with appetite and energy (and swelling) and see how it goes. 

Cyberknife could be an option - it's a super focused kind of radiation treatment - for the brain and/or lungs. She's going to talk to Dr. Patel about options. 

I told her I would not do chemo unless I start feeling a lot better than I do now. She said she'd put me on hospice but since I'm going to be away anyway she'd wait 'til I get back. If I do decide to do chemo she'd take me off hospice (apparently one can start and stop it like that.) 

My next appointment with her is July 8. I'll leave the retreat July 6, if not earlier. I imagine that it will be my last retreat.

It was a sobering visit, which probably hasn't totally sunk in.

Can You Find It?
Circa 1987 painting of Ronald Reagan,
Laura with laptop,
gold kesa,
shrine,
walking brain sent by Dhammagita

Ceremony

photo by Dhammarati

I had my anagarika ceremony yesterday led by Parami. It was very moving for me, although I was a bit worried the whole time about whether I would have the stamina for it.

On other fronts, energy is variable, but mostly low. Some days I can hardly get out of bed and don't want to eat anything, other days the sleep is rejuvenating to some degree and I can do a few things. Overall, it doesn't seem to be improving.

Now what remains to be seen is whether or not I can manage to go on retreat for two weeks on June 22.

Prosaic update

Laura's here and made an 8:00 AM appointment yesterday with Dr. Nelson, who said the reason for my fatigue could simply be cancer, or it could be a prolonged side effect from radiation, or dehydration, or other things that I don't recollect. We talked with her for a while and then did various tests on various floors (they wheeled me around in a wheelchair.) Chest X-ray, and an hour of hydration, and a trying time with a nurse trying to get blood out of a vein three different times. Finally she tried another vein and it was fine. Anna Dowling, the nurse, called later and said I have a bladder infection which they want to give me 7 days of antibiotics for. I've had it for 2 or 3 months, was getting used to it. I might have been able to get rid of it drinking corn silk tea. But I didn't. Botheration.

Life at this point seems to be a big chore, or more accurately an endless stream of chores, many of which I used to take pleasure in (or barely notice.)

Dr. Nelson asked me if I was still interested in doing the chemotherapy that we talked about. I replied that I was still planning on it but I had also been planning on feeling a lot better than I do now. I wonder if I'm going to have to change the game plan on that. What if I don't regain my energy? Unknown.

Having said all that, I feel a bit more energetic now.

I got the Chinese lozenges. They are very strong but not too sweet.

If you have emailed me, or given me something, please forgive me if I haven't replied. I have not been able to keep up with things.

Golden throat lozenges

Watching "Girls" (HBO series) and a documentary about Richard Attenborough.

I seem to be getting more tired, rather than less, which is disturbing. I'm sleeping more, and the amount of time I am able to stand up or even sit in a chair is shorter. I'm making an effort to eat more and hope that will help me regain some strength.

When I'm in bed, I started lying only on my back, which means way less coughing. Dhammagita says I might like these (left), Golden throat lozenges. If you can find me a pack so I can try them, please do! She got them somewhere in Chinatown. American cough drops, even the sugar-free ones, are too sweet for me.

All right well, that's all I got right now!

Skinhead

You know how when you were younger and allowed your skin to get super burnt in the sun? And a few days later, in passing your hand across it, wherever it was, flakes of dead skin would wad up. My head is like that today, many layers of skin are coming off it. I took a bath and was astonished at how much skin was left in the tub. All part of the healing process I suppose. A couple of years ago could I have guessed that I'd be writing about dead skin in the bathtub on a cancer blog?

And occasionally coughing like crazy, tonight to the point of throwing up. There are simple things I can do that help this, like drinking hot water and using acupressure points. I did a bit this evening.

If I hadn't started out being overweight, I would probably be too skinny now. Hopefully the appetite will kick in again before I get past a certain point. A friend made me some cornbread with weed (actually it's only the butter that is cooked in weed). I tried one small bite and I must say (after quite a while) I felt my body relax in a way that it doesn't otherwise. I think it helps with my appetite too. Today I had a slightly larger bite and later talking to Padmadharini I could not remember what I was talking about once I got to the second half of a sentence. That happened three times. Oh well, I had an excellent nap afterwards.

I got a sweet message from Dr. Littel today asking how I am doing. I haven't seen him in quite a while.

Sorry, no pictures, as I am not actually taking any and don't have the wherewithal to search the archives.

What I've been up to

Not much!

Enjoyed watching all available episodes of Sherlock, a BBC series starring the impossibly named Benedict Cumberbach.

I don't feel depressed which I'm glad about. I did not anticipate how doing ordinary things - anything that involves standing up - could take such an enormous amount of effort. Like standing up and putting on my jeans, or say, walking 10 steps. It's a huge mental adjustment.

Ideally I would be drinking more corn silk tea and putting more moisturizer on my leathery forehead and skull, and doing some rudimentary form of movement. I'm doing a bit, just not every day.

I'm very thirsty, and I am eating very little. Sometimes I only want to eat a specific thing (like dill pickles, pizza, or watermelon!) Especially when I get very tired, food sometimes becomes disgusting.

BTW my anagarika ceremony is 10am on June 15. Unfortunately it's "Order only" because of chanting the 10 (Order) Precepts. Hm, I just remembered I had a dream last night that involved some kind of threesome. I remember thinking, oh well, might as well do it before the ceremony! Yes, things have gotten a bit sexier as I figured they might. It's funny how in my dreams I am really into sex.

Jules came over yesterday and helped me out a lot while I mostly laid in bed. She brought food and cut up watermelon for me and took away stuff (mostly clothes that are too big or conservative) that I had in a pile for a month or so. She also looked up "whole brain radiation fatigue" and reminded me that it usually only lasts a month, which is great news that I forgot. It's been about two and a half weeks.

winter rain

people have been so kind

my eyes fill with tears

-santoka

A homeless guy called me "sir"

Dhammarati and I worked on this groovy book
cover at some point. The photo is from my tent,
on the three month retreat I did in '09.

Perhaps for many women, being female is rather more obvious. Maybe it's the delicate bones or facial structure. But for me it's all about my earrings, hair, or whether or not I'm wearing a dress. I am fairly tall, with broad shoulders. I'm not sure why it annoys me so much when someone calls me "sir"!

Taught the second class downtown today. I enjoyed teaching the class and think it's good, but takes an enormous amount of energy in my current state. I realized that saying "it's only an hour" is ridiculous, because a shorter class is actually more work than a longer one. Anyway, half way through! Makes me appreciate even more teaching that class with Bill who was holding the reigns.
Padmatara is coming now and will be backup if I can't do it, so that makes me feel much better.

Yesterday with the class and then seeing Misha I had to go downtown twice, which was extremely difficult. When I get really tired there is much more pain and coughing, but the good thing is that I do feel rejuvenated after sleeping, for a while.

I took some time writing to shabda, our monthly Order "reporting-in" journal. Here is what I wrote:

San Francisco, May 26, 2013

Dear friends, After receiving 10 days of radiation to my brain (yes, it is very sci-fi). I'm also taking Alzheimer's medication (in a very recent study it was shown to reduce cognitive decline from brain radiation.) So I'm probably at least a bit dumber than the last time you saw me, and the fatigue is intense. And lying in bed most of the day is a good time to catch up on reading shabda! Thank you to those who have wished me well.

My experience of the Order now is largely one of love and friendship. Having ended eight years of working for the Center, and, in a way without the distractions of the difficulties that come up working with people and getting tasks done, all that's left is this very strong sense of connection, and the feeling of love that arises for people, not just people here, everywhere. I'm finding it amazing, not so much that Bhante created this Order, but that he even had the idea in the first place.

Because in my experience the prospect of death brings out love. Much of the love is tinged with sadness, but even that makes me realize what a gift it is to be able to love so many people, and to be loved. I confess that I was not aware of this prior to knowing that I probably have a terminal illness.  Of course some of the usual barriers to expression have been removed, too, so much more gets said than it might have BC (before cancer.) I feel blessed to be part of this Order.

On a related note, I just spent a most delightful 10 days or so with Dhammagita. Not only was it fun  but she completely barraged me with gifts, which I sucked up like a hungry ghost  (albeit with a very large throat.) Sad to say goodbye yesterday.

Many people think of me as a dying person. This is mostly not how I think of myself. It's true that a year or two more of living is probably the most I can expect, that recent scans of my body (plus a routine brain scan) in the last month surprised everyone by showing cancer all over the place, even though I have no cancer symptoms. In terms of my daily experience, I am focused on life. The direction that my energy takes has completely changed to sort of interacting with my body, which is to say, mitigating the physical side effects of cancer treatment, and mental or spiritual effects as well. It is an all-encompassing task. In general, my orientation has almost completely changed from the future to now. I am still, at least sometimes, is very much full of life, which of course will be more apparent in person than it is on my blog. I remain cancer-symptomless, but after many different treatments in the last year and a half, all assaults in their own way, the side effects seem to be piling up. I include in the side effects all the different kinds of aging my body has done, mostly not visible, in a way that is beyond my 49 years.

Working with Vidyadevi to turn my blog Crap! I've got Cancer! into a book. Also, I will self-publish soon, also with her help, a collection of writings (from Bhante and other Order members') on brahmacarya called "Celibacy and Buddhism: Bits and Bobs on Sex and the Divine Life." I'm thinking it will be on the best seller list in no time...or else hopefully be a useful source of info for those looking for it. If anyone out there wants to do a second edition sometime - there is much more that could be usefully added - please do.

My anagarika ceremony will be on our Order day on June 15. Parami is flying out here to do the ceremony. (Fundraising for that initiated by Savanna in New York, bless her cotton socks!) My illness has pushed me a bit more into that way of life (simplicity...and a focus on my body in a way that is naturally not sexual) so it feels like something that's already been done in a way.

I've spent a lot of time writing the blog for the last...year and half, so have written into shabda maybe twice I think. I'm going to try to write in more.  As my paternal grandmother used to write, Armfuls of love, Suvarnaprabha

Correction

I realized I gave the wrong impression in my last post, that things are healing up and I'm chipper...So I changed this paragraph to say:

I did stop taking the steroids, and life is much better without them, tho' they probably help me have energy that's more similar to other people. Itchy ear canals have stopped, and fore/head much less burnt. However, so far I seem to have around 1-3 hours available per day of non-lying-down-activities. For example, today I was NOT lying down or asleep from 5-8:30pm.

It is a huge mental adjustment, realizing that I am able to do almost nothing but lie in bed.