10/12/09, Pick’n’um up and put’n ‘m down

P, keeps pressing me to articulate the partners experience of breast cancer and chemotherapy. The other day I was having a wonderful conversation with a co-worker, a 20 year survivor of lymphoma. And, she has really taken a concern in my well-being, very sweet. The point however, was I mentioned that an essay was tumbling about in my thoughts about exercises that produce mental toughness, emotional resilience and spiritual alertness. In my conversation with M I wondered about partners, unlike me, who after dinner flick on the TV and zone out till bedtime, perhaps they get some golf in on the weekend. How do they handle the intensity of this experience? M pointed out that she had attended a support group during her treatment and that she saw a lot of families breaking up – that indeed the partners couldn’t handle the added stress.

There are certainly people who train longer and harder than I do, and, I salute them, my point in this is not to boast about that, but, rather to examine the unintended consequences, the side effects that exercise offers (or, perhaps, we have it backward and the muscular power is the side effect, rather the mental toughness is the sought after). P, was pressing me a bit last evening as she struggled to deal with her own lack of energy, and general malaise. She asked me how I kept going. I found myself calling upon the dead lift, and a statement that the yoga teacher makes regularly in class – to explain. Coach Glassman of CrossFit, prefers to call the dead lift, the “life lift” since it is such a fundamental movement, picking up a toddler, our car keys, or a bag of groceries. I’m a profoundly lazy man, and so, I look for efficiency in everything I do. The dead lift gives me more bang for my buck than many other movements. Really, if there is a weakness here it is that usually the lift is done with really heavy weights and hence gets done slowly. Its focus becomes strength, rather than power, but one can use lighter weights and jump, or pair it with something explosive, like dumbbell snatch and overcome that easily. To the point, P, said how do you keep going? And I slipped into a metaphor – I just squat down and grab the bar with my right hand, and then my left hand, and then keeping my back straight I stand up – simple, mostly.

Some days, I can do that a lot, others, not so much. But, using the words of the yoga teacher, “Just, observe what you can do, don’t judge it. Make a note of it and then get back to breathing, and working.” I had the concept before, just not the words, and so it is nice to have the words. Some days the emotions make it difficult to do anything let alone to work out, and on those days, I give myself double credit for attendance, but, I make certain that I’m in attendance. I don’t set high goals for those days, but I do try to make certain work gets done and I don’t beat myself up for what doesn’t get done. Mostly for me the emotion I’m experiencing is anxiety: too much energy to burn and no place to point it. I recall this summer waiting for test results and being so anxious, my bullshit meter was pegged. I asked my boss to please shelter me a bit, because, I knew that if some whiney, self-absorbed, dufus got past the safety barriers, I was going to rip their head off and shit down their neck – fairly anti-social — without context. My boss has been a dear about that. The gym is a place to pit that anxiety and aggression against inanimate and indifferent weights, and to re-create myself. The anxiety is probably the same as fight or flight, and remembering back to my friend M and her observation about couples breaking up I suspect the partner ended up with overwhelming flight response – nothing in their lives prepared them for it, nor did they have a way to convert it to fight and then to burn it up. I’m fortunate to have experiences with martial arts and in the gym that give my points of reference and words for what might otherwise just be an acid bath of emotion. Pick’n’um up and put’n ‘m down that’s how I get through.

10/11 Farther away, as you get closer

The farther away we are from the last infusion, the better I feel, the closer we are to the next one, CRAP.  The last one, YIPPEE.  I awoke the other day and said to B  “hey, more than half way there” and quickly realized how focused I am on this phase of treatment.  Keeping our eye on the prize and focusing on what I and we need to do to get through today is tricky some times. 

This cycle is different from the last, which was different from the previous.  I’m not sure what my body is feeling much of the time.  I know when I need to lay down.  I don’t know if I’m nauseous or hungry or neither or both.  I know that I cannot put two thoughts together sometimes, and thankfully, B and the katz understand this and do not expect anything of the sort.  I know A understands.  I felt it in her warm grasp during our entire walk today.  I know that E understands because he rode his bike past the window several times doing goofy stunts just for me and I was gratefully trapped in the moment of joy with him.

For someone who takes joy in putzing, I have to admit that I cannot putz to my hearts content now.  I putz in spurtz, and although it is sort of satisfying, it sure ain’t the Full Monte.  Being aware of what my body needs, and being ok with it is my primary job right now.  It is what it is.

Today it feels like chemo is wearing down some edges that will take time to sharpen.  In time.

10/8, Time keeps on slipping, slipping into the future

E and I went camping/canoeing last weekend. It was a grand adventure. With P’s situation I’m afraid I/we lost track of E’s birthday. This losing track is something that I’m struggling with in this situation. Mostly it is anomalous sense of time passing, more than forgetting. I didn’t forget his birthday, I just couldn’t keep it in focus as the time elapsed – I’m not sure I’m explaining the experience. Anyway, I realized around Tuesday, that I wanted time in the woods, and I wanted something special for E. So, I noodled around on-line a bit and talked with a buddy at work and decided to go to Flagstaff Lake. In truth it is 2 lakes, nested crescents divided by a peninsula/island where there is a primitive campsite – about 6 miles from the Stratton boat ramp. Perfect I thought.


View Larger Map

So, we threw our gear together Thursday evening for a Friday morning departure – no school. The plan was to overnight and return late the next day. We had perfect conditions for our paddle out. The Bigelow Mountains filled the horizon to the south; the tops shrouded in clouds, and were dusted in early snow, the sides in full fall color. We arrived at the campsite about noon, set up camp, and then took a long slow walk. We saw partridge, ducks, and geese, lots of moose and deer sign. Our planning had been so punctuated that at the C store I stopped to fill the gas tank, and sent E in to pick out food for dinner – 2 cans of Chile, and a package of hot-dogs, as it turns out. Whatever. Time to cook it and I was up for cooking it all, but, E held me back he insisted he couldn’t eat that much. OK. So, one can and half the hot-dogs – and as we will find out this was a prescient thing. Indeed as the weekend unfolded I found myself trusting E’s misgivings and observations increasingly. He doesn’t have the experience to really articulate his concerns, but he has good gut instincts. Next day, I thought we would paddle out by going around the island on the other side, see some new stuff. We had a slow start, packed and underway, by 10. Cloudy and breezy with brief showers. As we neared the foot of the island we found that with the lake level being down 3 feet or so there were no channels back through to the main lake, just, mud and no real sense of how long a portage it would really be. We were left with the option of paddling back the way we came and the weather was worsening. By the time we got back to the head of the island the wind was howling and the waves were picking up. I in a fit of parental democracy in action I decided that we were done. Back to the campsite for another night, fortunately we had food for dinner. We set up a tarp to shelter the tent from wind and rain and went to bed early. At dark the wind died down, but the rain started in earnest, and poured for 3 or 4 hours. We awoke to silence, no wind, or rain – but, fog. Fog so thick we couldn’t see the far shore. Whatever, as my Grandfather used to say “If it aint one thing tis’a-nuther”. We made breakfast, and packed and by the time we were ready to go, the fog cleared enough that we could see the other shore. So, we paddled across and followed it out to the ramp, and we were home by noon. Refreshing, and exhausting, a good adventure all around, I thought my batteries would be recharged. But, I find myself still struggling with how slow P’s treatment seems to be going and how incredibly fast everything else is going,

A’s soccer season is almost over, responsibilities with the Boy Scouts, and E’s Jujitsu, all seem to explode on me. Work is the same way, minutes drag, and hours pass in kaleidoscope haze of speed. It is humbling to see the generosity of our friends. And I’m sure they would do more, or rather more precisely, if we knew what we needed and how to ask for it. But, that is the rub. I’m not sure what I need. Do I need more time, or conversely, fewer responsibilities? I’ve tried that, sort of, with the Boy Scouts, but, alas, that time is therapeutic, giving it up costs me something. But, I can’t pretend that I’m doing my best with what I’ve kept, again, because I can’t keep the passing of time consistent. I don’t think I’m dropping too many balls, or looking too awkward when I do, but, it is still an unnerving temporal disorder.

10/9 Cycle 3 Day 3

I’d say things are going ok.  Yesterday I had the pleasure to have a friend I have not seen in too many years drive me to my herbalist and acupuncture appointments, and to get that darn old neulasta shot for my white blood cell production.   It was wonderful spending time and catching up.  Today I feel tired, so I have a mellow yellow day planned.  I’m hoping to draw what this looks like once I get the energy!

As far as nausea and other body stuff, I’m guardedly optimistic when I say that this round has not been as uncomfortable as tha last two so far.  I say that with a whisper, mind you.  I do know that I need to sleep, and that I will do.  The Katz are already positioned at the foot of the bed for their morning siesta.

After the 4th infusion, my surgeon is booking an MRI at the same place as the first one, and we will meet after the results come in to learn about the progress and next steps.  Oncologist wants to see a CT scan just to check out a bigger picture to make sure all is well. 

SO the painting of the bedroom and picking out flooring will have to wait, DARN IT ANYWAY!  Maybe tomorrow!

The love, support, emails, comments, prayers, thoughts, food, surprises, calls are all so wonderful.  We are grateful beyond measure.

10/7 Cycle 3 Day 1 “HYAAAAAA!”

cowgirl-150x150Back up on the trail this morning.  The horse and my family  in sinc.  My boots are wearing well.   I spent most of my time during the infusion knitting socks and visiting with B, A and our sweet friend S.  When I knit, I can visit  at the same time.   When I draw I have a hard time doing anything else!

It’s 6pm.  The infusion was at around 10 or so.  Vitals are all good, blood count is good, especially the white blood cells.  All news we want to hear.  We met with our oncologist who wants to order scans after the 4th infusion.   Options:  whether it has shrunk like a good little tumor, or remained the same or gotten bigger, surgery is next.  Once we get the scans we meet with our surgeon.   It feels and looks  like it is shrinking to me, being the “G.O” (see the ABOUT page if you don’t know what G.O. is) that I am.   Short story:  wait two more weeks, spend time healing, visualizing, eating when possible, resting, acupuncturing, herbing, drawing, stacking more wood, going to soccer and jujitsu, hiking, laughing, visiting, painting, hammering, sawing, tearing out walls…you know, that kinda stuff.  The stuff I love to do.  THEN we do the scan thing.  This brings up some memories for us about the pet scan and waiting.  We will be writing about that experience sometime soon I’m sure.

I feel good right now.  A headache and caution.   A nice long nap with B and the katz was wonderful this afternoon as A stood guard.  A came with us.  She said she has a hard time with the port.  She doesn’t think she could be a doctor.  I meant a lot to me to have her there so she knows what goes on.  We are all working together to come up with the best ‘stay ahead of the body stuff’ as we can.  Cycles 1 and 2 were different enough that I don’t know what will happen, but I do know what to expect, if you know what I mean.  B and I just took a good walk.  I’m ready to settle in for the night.  I’m just taking it easy at this point…

10/6 For the love of katz

katz-7-150x150While the family slept, a friend and fellow kat lover went on a hot pursuit of some kitty furniture.  This friend called a maker of such exquisite works to see what kind of deal she could finagle …in the mean time, others hearing of this mission offered to help raise funds to obtain the goods.  The short story is that the craftsman created a tree and scratching post for the katz and donated it.  It was picked up from the far off land by yet another, (who actually is the Cheshire Cat incarnate) and ultimately found the felines it was made for.  Upon delivery, Guiseppi, Sofia and Chuang Tzu sniffed and scratched and perched and played happily ever after, and it brought deeeelight to the humans.

Thank you D for this gift.  Thank you B from r6meows for your kind heart and craftsmanship.  If you have katz or know someone who does, please visit www.r6meows.com.  Thank you to all the others who helped blow wind in the sails of this vessel.  The katz are feeling very supported indeed!  Port-o-love strikes again!

I’m learning not to get whiplash when things like this happen.

10/5 Awake

My oldest and very loving, swell and attentive brother sent me an off line comment that I would like to share with permission.

I’d like to talk about the whiplash thing.  I’m in Asia this week, staying in a nice hotel in Singapore, a thriving and very picturesque place.  Went over the bridge to Malaysia this morning where we saw a woman in front of her hovel washing what looked like the breakfast dishes while her little one did his business in the same stream (upstream).  So what’s my point?  We should all have whiplash.  I hope you don’t feel like you have to be perfect through this.  Fighting the good fight is important for you and the family, but it’s ok and maybe equally important to be real when it gets to you.  I think the kids see it for what it is.  You’re the best.”

He went on to say:  Anyway, I made a connection between my sighting and your comment about your ups and downs.  Maybe it makes sense, maybe I just wanted to talk about what I saw.  But I am intrigued by trying to find the balance between being too caught up in differences and being oblivious to them.  Whether it is as personal as your current ordeal or something as broad as the inequities in life.

I hope this makes sense. I know you don’t need the advice I am offering, but I needed to offer it to someone and your blog entry offered at least a vague invitation. I hope you’re feeling ok. I look forward to the next entry. It’s how we keep track of you.

Thanks R.  I’m so fortunate to have you in my life.  Anything you have to say to me is a gift. Truly.

I saw the movie “Angela’s Ashes” this weekend.  Somewhat like R’s experience in Malaysia, it had quite an impact on me.  Being a child in Ireland in the 1930’s is so far out of my realm of experience.

Awake-150x150One way I’ve been working to avoid whiplash is by being more awake.  I like to think that my eyes are open most of the time.  (Thankfully I’ve inherited Pop’s sleeping gene, so I must confess that my eyes are CLOSED some of the time.  As I digress, I just have to say that I’m grateful that, to date, I have NOT inherited his peeing gene – hey, with 4 brothers, I must have some crude “Y” need to talk about bodily functions once in a while…those who know me really well might say it’s more often than that…)

Through your comments on this blog and off line, I’m learning that my family’s experience with breast cancer has ‘awakened’ a lot in many people.  If you are moved to comment, I’m very interested in what it has woken up in you. (click on the paper tacked with a push pin to the right of the entry title if you want to comment)  Now that I think of it, we developed this blog to ease some of the whiplash after being diagnosed.

I’m happy to say that I’m feeling quite well.  Days 7-14 of the cycle are groovy.  The carpet in the bedroom is history, the walls are were patched this morning.   I had the true honor of going to support an elder for a few hours today.  B and the man cub had quite an adventure camping this weekend.  A finished her Rube Goldberg project with some of her classmates JUST in time…and she told me today it was the only one that was successful the first try in class.  The things of every day life are so vivid today.


10/2 Dedication

The people who live with me have quite a job.  They have seen me all calm and serene AND completely unraveled.  They see how the chemicals challenge my composure, my ability to think (to the capacity that I was able to before all this!) and they cannot avoid witnessing the  physical changes.  I can’t imagine what it’s like to see a loved one going through this.  It’s in their face every day.  They  must get whiplash from the extremes.  The past three days, I have had boundless energy.  I mean I cannot contain it at times.  Errands got done, calls made, visits were had, more carpet removal before dinner, wood is still getting stacked.  And I rest when I can reign that horse in.

I am so grateful that people have been thinking of B, A and E.  (For those of you who don’t know, B is my partner, A (15) is our daughter and E (13), or son.)  The kids got flowers, people ask about how B is holding up or how the kids are doing, we ALL enjoy the Calvin and Hobbs comics that are getting left in our mailbox (in fact some of us are hording them!).  People have asked about their food preferences and other needs.  That means so much to me.

Today is our son E’s 13th birthday.  B has taken him on a camping trip.   I love to think of this as a rite of passage of sorts.  I don’t think B will leave him in the middle of the woods all naked with a rock and a dagger, but I know he will put him to a test of skills that he has been learning over the years.  A and I get to spend time together after soccer practice, chopping wood and carrying water, closer to home.

Today I am dedicating this blog to my sweet and loving family.  They are goofy beyond measure and so real.  AND they have accepted me in my many forms.  I am so glad we are together.

UPDATE:  Please click on the Walk4Hope page to see our progress!