January 2010 – Riding a new Horse

Paint the fence, wax the car

B: Tiresome. That is what cancer has become. Not tiresome in an angry or frustrated way. Not tired in an exhausted sense, but in a tedious way. At the outset the newness, the fear, the urgency, pushed treatment along. It was hard to keep our eye on the ball, because we were jostled and bounced around. Now it is hard, for me at least, to keep my eye on the ball, because I’m dozing off. Literally. P, is starting to show cumulative effects of the chemo. But how many times can we write about her going to bed early? Or working from home to preserve her energy? What does it mean to say that cancer treatment has become boring? It still takes up a big space in the room. We still care a lot about the outcome, and daily, even hourly, we check in with P. But treatment and living with treatment is tiresome . A while back, I mentioned a metaphor of hiking switchbacks and I think that was really apt.

For me there is a nervousness that goes along with boredom and feeling dozy. I snap awake with a jolt of adrenaline, starting and flailing about a bit as I try to re-orient. We aren’t out of the woods yet and so I don’t want to relax too soon.

P: Marathon, switchback…you pick. Endurance.

Just as I started getting back in the swing, hair growing, going to work, more active, I must slow the pace. Hair has slowed, and some has fallen out. I need more naps. OK. We can do this.

Yea, I’m tired. No entries all week. After 8 weeks of infusions, we are noticing more the cumulative effects of treatment. On Thursday after dinner I just put on my comfy clothes and crashed. From my vantage point I slept very soundly. B said I was a bit restless. So much of life feels normal to me. I ‘m up and going to work every day. I’m cooking sometimes. I’m skiing on the weekends, doing chores during the week. Going to book club and staying out “late” with my pals. I’m actually reading and finishing books. The part that does not feel normal is the fact that it feels too good to close my eyes at any time of day.

I am grateful beyond belief that I can work at my own pace and from home. I’ll catch up on what I slept through this afternoon, tomorrow or on the weekends.

I can muster up energy most of the time. For example, I could go skiing again today. BUT I’m deciding to stay put and conserve. I just know that it would take a lot out of me trying to stay warm with sub zero wind chill. My friend L who has much experience with breast cancer treatments has talked to me over and over about the conservation of energy. It’s really the long haul thing. I could fool myself into thinking that an activity would be fine, but it all seems to add up. I find myself wanting to be active and yet aware that we still have 4 weeks of infusions left, and my body is not recovering to normal before the next invasion hits. B came home Thursday and said “We had ‘fun with weights’ today…my favorite workout!” He was all sweetness and light, it was so cool. I wanted to hear every detail…from the recliner. I’m finding that the day I tire most is on Thursday at this point. It seems that the effects last longer and longer after each infusion. This is something we saw back in the fall with AC, but it felt more dramatic with that powerful cocktail.

As far as other stuff my gut just doesn’t feel right. I don’t really know how to describe it. I don’t feel nauseous, thank heavens. I do have an appetite sometimes. It’s like my digestive system is tired and working really slow. I’ve been taking Rhubarb 17 and Diagnostic Tablets (both herbs) which help sometimes, but definitely not completely.

Fatigue, gut awareness and pressure in my sinuses behind my eyes are the biggies right now. My skin seems to be in good shape, probably because I’m just taking care of it better than I ever have. (Thanks to the sweeeeeet care package from my niece D, full of good things for the bod.) Flesh wounds take a little longer to heal. On the other hand I have been humming and singing a lot. I feel happy and silly a lot of the time. We have been laughing a lot together. I’ve been so in the moment it has been wonderful for my spirit.

Love continues to pour in, cards, calls, prayers. Thank you for sticking with us, readers. It really helps. I don’t know if you know just how much.

Transformations

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During today’s infusion there was someone who was a few chairs away, behind me. This person was apparently really struggling. I was only peripherially aware of this as I had my ipod on and was tuned into my niece V’s gift of songs which are really fun to sing to.

We have mentioned several times that at chemo, we have observed quite a range of human coping and suffering. Some people go to treatment in their sweats and slippers. Some bring stuff to do. Some lay back and rest or sleep pretty much the whole time. Each chair has its own television, so some are tuned in to that. Most dialogue is private but there is usually a hum in the air. I pretty much say hi and smile to anyone whose eyes meet mine, but basically I tune into my stuff. I dress partially for work with a matching shirt from B’s closet and always have my cowboy boots on. (I wear B’s shirts both because they are comforting and it’s much easier to access the port-a-cath with a button down shirt on, which I don’t have many of.) You’d find me content I’d say, usually singing silently as I work on my lap top or drawing. Occasionally I read.

Today when this other patient’s lament came into my awareness I kept my music on as I wanted both to afford this patient some privacy and honestly, I didn’t want to be dragged down. When the nurse checked in with me she asked if I was ok with what was going on, and all I said was that I was sympathetic to the patient’s suffering, but didn’t know if I could do anything for them. This is really important for me to write about here. Unlike the other chemo cocktail I was on, with this one my defenses are mostly still in tact. Keeping my stride during this marathon includes looking over my armour for any areas of vulnerability. Finding the balance of compassion for others and self care is always important to my well being. In having compassion I am able to do what I can to send energy out. This is what I CAN do.

This patient was going through a transformation just like I am. I think if a person observed me they would see someone who really looks like she is content…maybe enjoying herself. Music transforms me. Art transforms me. Being able to reestablish myself at work is part of what makes me feel productive and useful. Love transforms me and we know there is so much of that free flowing into our life. Pain transforms me as well.

Right now I feel like I’m in a time warp, an incubator of sorts. Today’s drawing is about that. Physically I’m feeling good. No nap this afternoon. I left the infusion at 11, went to work for 2 hours, came home, finished the funding application (YEA!!) and have been working and taking breaks since. It’s a really rainy afternoon, and aside from grief over skiing conditions, I’m doing well and plan to retire early after a nice long shower after dinner.

Taking time

I left work on Friday noonish with the full intention of going home and working. I have a funding application that is due this coming week, and the draft needs some quiet time…rather I need quiet time to complete it. I made it home ok, but then received a call from a friend that had something to drop off. She stayed for tea. Then I remembered I wanted to call my 93 year old aunt who’d just given up driving at the request of her children. So much for work.

“I’ve been praying for you every night.” was the first thing my aunt said when she realized who was calling. We eventually chatted about the difficult decision to stop driving. I remember how it was for my mom, her sister, when she chose to do the same. Giving up that particular independent task must be such a loss. Both my aunt and my mom have been independent women. They ran their homes with 4 and 5 children respectively…and husbands too. Even in their aging they both want nothing to do with burdening their children. I am taking a liberty here to say that my family, my brothers, sisters in law, cousins, nieces, nephews and I have all been blessed with their tender loving care. So when my aunt told me about praying for me, I smiled and thought to myself that this woman just gave up something that most of us take for granted and here she is wanting to talk more about me than her. The word selfless comes to mind when I think about the two of them. They always take time for me.

This call got me thinking about a comment that A made a few days ago. I referenced it in my last entry. I had left work early so that I could take my kids to get hair cuts, and I planned on being on a phone conference during their appointments. The haircuts didn’t take as long as the conference, so we walked to the car with me attached to the phone, and sat in the car until the meeting was over. A said something like “you are always on the phone and I don’t feel like we get time with you any more”. Boy Hardy, let me tell you it took all of me to hold back my self absorbed thoughts. I did engage in a very unsatisfying debate for a few minutes and decided to wait until I collected my thoughts before we went on.

Running the breast cancer treatment marathon totally rearranges my availability to my family…and myself. Obviously, there are other things I’d rather be doing. So as I think that I’m getting back to work, finally ending the drain on my paid time off accrual, managing to get our kids where they want and need to be, feeling more like a partner to B, finding time to do what I want to do…balancing and juggling… I hear that my kid thinks I’m not available. Our kids have gracefully accepted something that has gyped them of so many things. They have not complained one bit. And although this chemo drug is not nearly as depleating as the first combo, my fatigue is evident at times now. At dinner that night I asked A how I could be more available. She really is very logical about it all.

I lay in bed Friday night thinking about how the heck I was going to make it through Saturday. We have passes to a couple ski mountains and we have been alternating hills each week in January. Saturday was to be the bigger of the two, a place that is really one of my favorites in Maine. The reason for my trepidation was the accumulating fatigue that I’d been noticing this week. There was no way I was going to make it through the whole day skiing. I’d planned to bring my computer so that I could get that application completed and put in the time I’d abandoned on Friday. I was even wondering about the drive. What I was doing was anticipating fatigue, not necessarily feeling it. My thoughts included “I SHOULD really take it easy. I SHOULD NOT over do things. I SHOULD be careful. This fatigue will put me at risk.” And finally: “I SHOULD get that work done.” These thoughts are so foreign to me that I could not believe I was actually thinking them.

E brought a friend along and A and I planned to ski together for as long as I could. The day was your picture perfect winter day. Crystal clear sky as blue as blue is blue. Cold enough to keep conditions terrific and warm enough to stay warm enough. As we went up the lift each time it was impossible not to notice and comment on the beauty. The snow covered trees against the pristine sky provided an amazing back drop for wonderful conversation between us. We skied and skied. We started racing down the hill taking different paths to see who could make it to the bottom before the other. Even the lift attendants were watching to see who arrived first. I found myself skiing with complete abandon, which for me is like what Dory did in “Finding Nemo”. You know, where she’d be on a mission and then just start weaving around and singing? Well, I’d start racing down the hill and then get into my form and turns and weaving and humming and sometimes singing really loud, before I remembered that I was in a race. It was so freeing. Incidentally, A finished first many times more than I did. Riding up the lift one time A said “I feel so happy when I ski.” She described the feeling of “infinite” that the boy in the wallflower book spoke about. We started talking about the sky and the expanse of the universe and the blue. At what other time would we have had this conversation? There is just something about skiing for A. Her smile was noticed by many who commented and she said “Of course I’m smiling, I’m skiing.”

Before we knew it, it was time to pack up. The ride home was quiet as we drove into the dusk. The views over the lakes and mountains were spectacular. A joked about a conversation she had with a friend she saw. “He asked who I was here with and I said…my mom. How lame is that?” We laughed and laughed. As we pulled in the driveway A was planning her ride to the hockey game, immediately after our return. I looked at her and said something like “you know I’m not going to be able to drive you…” and she said “I’m all set mom. Daddy is going to take me. Thanks for spending time with me today.”

Today is Sunday. I slept well. I feel ready to FINALLY put in some work time. The fire’s roaring, the katz are snoozing. E and B are out on an adventure. A is still abed. I’m so happy we went skiing yesterday.

So Much Trouble, Blues

Some who know me know that I’ve got a whole another storyline of psycho-drama in my life. I’ll spare the details. But suffice it to say that some of that drama came to full bloom this week. In any case progress was made, nobody died or went insane. However, in the midst of it P, speculated that my Karmic baggage must be really screwed up. I suppose a person could be offended by that, but, it tickled my funny bone. She speculated that in a previous life I must have been Hitler or something — which again probably passes over to poor taste, but, the absurdity caused both of us a fit of the giggles. I argued that Hitler probably came back as snail scum, or, as an intestinal parasite, rather, that I was probably just your garden variety axe murderer in my previous life (perhaps like Maggie Smith’s character “Grace Hawkins” in the movie “Keeping Mum”). The irony and absurdity got us laughing. The whole thing has real potential for a monologue or a stand up routine. We tried it out on the kids and it really bothered A. She was really defensive of me and she didn’t really see the humor — it is touching that she would go to bat for me. I think perhaps physical and emotional tiredness made it more funny for P and I — kinda giddy.

In any case I found these guys singing the blues and I thought (since, I’m a musical dunce) that I’d let them sing for me. Just, glad it is the weekend.

The time before spring

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Home from the infusion. You know the feeling when seed catalogs start appearing in the mailbox? Well here in Maine it is a sacred time…at least for me. Today I got that feeling when I drew this panel. Something is moving for me. I and we are doing what it takes to enjoy and endure the winter cold, snow, quiet, dark, ice. I feel the incubation and am taking care of our plants more than usual. The cyclamen that I was given at my 20th anniversary at work is actually producing a whole bunch of new blooms. (Usually those plants end up a frozen block on the top of the compost awaiting spring to put them out of their ugly misery.) The only plant that is not happy at all is our Ficus. She is shedding every leaf (could it be chemo covad??) and believe it or not, has new green sprouts here an there. Mangy fox syndrome if I ever saw it.

I was really tired in spite of the fact that the infusion went quickly and smoothly. So instead of going to a meeting at work and then a friend’s house for an enchilada lesson, I came home, met by phone and snooooooozed with the furry you know whozzzzz. The friend said she’d be delivering the enchiladas and the lesson could come at another time. At this point the fatigue is evident, definitely a cumulative thing. I’m incredibly grateful that my night time sleep has returned to my usual which is total slumber. Occasional dreams which are comforting, occasionally waking because a light is on in the living room illuminating the scene for teenage activity. I’ve come up with a hydrating routine that seems to be good enough for the raisin body.

I’ve moved acupuncture to every other week as our insurance has changed and they don’t wanna play. I’m looking forward to tomorrow’s visit. My guts aren’t right. Not nausea, not exactly constipation, but definitely not functioning the way it should be. Don’t like that. Haven’t had any major celebrations of late, if you know what I mean.

The weekend was really fine. I volunteered at the commissary at the ski mountain near our house on Saturday afternoon while the kids skied and boarded. It is always a fun thing to do. I was able to attend a wonderful 50th birthday party for a lovely friend after and we even stayed till almost midnight. Wonderful to be around fun people we’ve known for a long time, and to listen to, play and sing some great songs as a family with friends. Amazing. Amazing for me even sans chemo to be up and alert that late. On Sunday I mostly made up some work time that I missed last week, having left work early for snoozeland.

And today we awoke to a nice snow fall. It’s just stopped, we may have gotten 4 or 5 inches, enough to clean things up and improve conditions for the activities we enjoy.

Every so often I still run into people who have not been privy to the information about my health. I’ve probably mentioned an observation that as people age, their annual holiday greeting letters get longer and longer, and more and more about health issues. I see how it became the main focus for Pop, and is becoming the focus for mom as body ages and activity slows. I take any opportunity to ask someone who’s been there about the things I am about to embark on. You can bet that if you’ve had a colonoscopy that I may be calling for some hits from Heloise when I turn 50.

But even if I didn’t want to mention it, my coiffe is hard to ignore. I just happened to run into 3 such people this past week. The general response is “let me do something to help…I didn’t get to all this time…what do you need?” More love and support. The genuine interest in what we’ve been through is touching. While I love talking about other things, I want these people to know whatever they want/need to know to get caught up. AND it is something that has woven itself into the tapestry that is our life. SO the conversations were about both what we’ve been up to since we saw one another, and what we’ve been up to in relation to breast cancer. Saying that I was diagnosed in the summer gave me a view down the long trail that we are on. This is a view I don’t look at too often, since staying in the NOW is where I’m at these days. I think that breast cancer touches us all. I still see in the faces of people I’m talking to the old “if she can get it so can I”. Women grieve breast cancer, men grieve breast cancer. Everyone wants to save the Ta Tas, and so there is a load of compassion.

A lovely woman at work who cheers me on every day, who celebrates fantastic socks, and embodies G.O. energy told me that she has a new car. I was appropriately excited I think. Then she said that she was registering it and thought of me and got a breast cancer plate. No whiplash. We shared watery eyes, smiles and the knowing that G.O. energy was alive and well.

I think our family is doing ok with stuff. I’m working much of the time, and when I do at home, I’m on the phone or my computer a lot. I’m working afterall. My family thinks I love talking on the phone, which I really don’t, but I DO want to spend the time with callers or people I call in the name of being present and connected to the important stuff in my life. I HAVE to use the phone for work, and sometimes do supervision or have meetings on the phone for HOURS AND HOURS. Kids don’t like that. Mom’s home, mom is home for me. And because I cannot concentrate on my role in the meeting when A is standing before me with the most crucial social plans awaiting my approval, or just wanting a hug…sometimes I have to say “excuse me, your honor, I am taking a minute to hug my daughter…” in the middle of the meeting. Thank the universe that my colleagues and boss understand what is important in life.

We don’t talk about treatments or cancer or how they’re doing with it all a lot. That would be picking the scab if you know what I mean. They know my schedule and say “good luck” or “I’ll be thinking of you today.” when they know I’m going in for an invasion. They know to close the door and keep the volume down when the katz and I are in a pile on the bed. And when we are doing something fun they take the time to say “I’m glad we are doing this.”

I got on a new horse in July 2009. My boots are wearing in beautifully and are becoming a regular part of my life. The horse is not unruly, just unpredictable. The more I work on mindfulness and being awake, the freer I feel, and the more flexible I become to stretch in ways I did not think possible.

Some of my favorite things

E and I were going out to take the recycling to the transfer station this morning. As we approached the end of our driveway, I saw in the dusting of snow two very distinct and large hearts which were made by someone evidently turning around in our driveway. I stopped the car at the same time E said “hey do you see those hearts?” We looked and smiled and as we pulled out of the driveway E said “Someone loves us.”

Thank you, thank you for talking with me about mortality and life and living and dying. It is always enriching to me to learn how others grapple with the unknown. Reflecting upon the honor of being at births and deaths always gives me a warm heart. I am awed by these experiences. I firmly believe that having midwives at both transitions is as it should be. Having been in that pseudo role on a few occasions has enriched my spirit.

Many many moons ago I was given a passage that I committed to memory immediately. I wrote it, I painted it, I wrote it again. I recited it. Long days have passed since then, and I found myself reciting it to B during our preslumber time the other night. I think I remember who gave it to me and will ask her if it was she the next time we speak. However, I had no source. Then I attempted to write it down here and saved it as a draft. I went into the shower for a long hang out in the steam and warm, and remembered more.

And so today, I opened the draft up to find the source and the exact passage. Some Little Sisyphus must have snuck in. My provider of so much. We were both fairly impressed at how close my ‘draft’ was to the actual wording. (It amazes me that my space cadette brain holds on to the gems no matter how garbled it gets with all the other stuff. Don’t get me started on all the numbers I retain. GEEZ.)

Anyway, here is my absolute most favorite passage of all time. It is so fitting at this point and time in our life lesson.

“Peach Blossom Spring”

“Ah, how short a time it is that we are here! Why then not set our hearts at rest, ceasing to trouble whether we remain or go? What boots it to wear out the soul with anxious thoughts? I want not wealth; I want not power: heaven is beyond my hopes. Then let me stroll through the bright hours as they pass, in my garden among my flowers, or I will mount the hill and sing my song, or weave my verse beside the limpid brook. Thus will I work out my allotted span, content with the appointments of Fate, my spirit free from care.”

T`ao Ch`ien (A.D. 365-427)

Two Zen Monks

Two monks were once traveling together down a muddy road. A heavy rain was falling. Coming around the bend, they met a lovely girl in a silk kimono and sash, unable to cross the intersection. “Come on, girl,” said the first monk. Lifting her in his arms, he carried her over the mud. The second monk did not speak again until that night when they reached a lodging temple. Then he no longer could restrain himself. “We monks don’t go near females,” he said. “It is dangerous. Why did you do that?” “I left the girl there,” the first monk said. “Are you still carrying her?”

I think that this story is a lot of what I was exploring in our friend’s account of her struggle with front squats. For me, the first cycle of chemo, was fairly overwhelming, and I wasn’t even taking the drugs. The surgery was also full of angst. And so, I kept my eyes down. I looked out about a week and no further. I would look at today on the calender and do exactly what I had to do and just that: work, taxi the kids around, go to doctor’s appointments. But, as I mentioned, the feel of treatment, and, our self-identity; that of cancer survivor, has changed. A future, aware of, but, not dominated by cancer extends around us.

I think the wisdom I see S exhibiting in her struggle with front squats is that we carry our emotional burdens around and forget to put them down. In order to lift the barbell she had to stop a moment and put down the other burdens she carries in order to deal with the immediate challenge of the barbell. And to my mind that is the same lesson that the two Zen monks teach us — and so my analogy of gym, and church and mediation hall extends a bit further. I’m not certain S is aware of that, or that she thinks about it in that way — rather that is my understanding, or mis-understanding. Yet, I dare any man here to stop and have a little cry before they go for a 1 rep max. Generally, we are so emotionally constipated, that were we to let our guard down to do this we would instead be overwhelmed by weeping. Weeping about the gentleness we wanted our fathers’ to show us, angry that we were mocked for any sign of gentleness or compassion by adults and peers, weeping about our own fears of inadequacy and unavailability to and for our children, weeping at our losses of mentors, and friends, and so on, and so on…. It is unfortunate that in the story girl=danger, we risk, re-creating the misogyny implicit in our culture and gender if we are not careful. Yet, we carry our emotions bound up in boxes, boxes wrapped in plain brown paper, so that we don’t even know what they contain, and yet, we carry them. I have wept more in the last year then in the last 30. I have cried in pride of my children. I have wept over the burden of ailing parents. I have mourned P, and my own mortality, brought into sharp contrast by cancer. Am I done, probably, not. Am I “good” because of it, certainly not — merely human and finally waking up to it.

I don’t think that P and I will ever be able to put all of cancer down. And yet at the end of the day, I don’t want to be the monk that carries the “girl” all day long. Moreover, not all about cancer has been “bad” we have been overwhelmed by generosity, kindness and love, so much love, love from unexpected quarters. We are by no means done with treatment, 6 more weeks of chemo, 4 weeks of rest, and then 4 weeks of daily radiation. And then as P describes, ongoing Tamoxifen, upto 5 years, and 6 and 12 month check ups with rounds of tests each. Yet, we are almost ready to exhale, and to take another breath as life takes on a new normal.

Halfway Through

It has been awhile since I’ve posted. Perhaps I’ve been holding my breath. Certainly, surgery was a turning point in the treatment. The grain of the experience subsequently has taken on an entirely different feel. P met with the Surgeon at the regular scheduled after visit. And there the Surgeon made the claim that, “All the cancer is gone now.” Some of my silence is, perhaps, I think trying to balance and adjust to being cancer survivors. What is the flavor of hope in a world of diminished expectations? Yesterday the Oncologist hedged a bit on the notion that the cancer was gone. That hedging certainly isn’t enough to tip us into despair, but, it raises questions. Is this just Surgeons and Oncologists talking past each other? We’ve seen that before. Is it the lenses of statistics that describe everyone and no one? We are particular people. I suspect that we will live with these questions, hopefully, for a long time to come.

This round of chemo seems to have less side effects, although, I’m beginning to see a cumulative effect of fatigue. P, is too, but, she is Winnie-the-poohing through. And that brings to mind some observations I’ve made about the toughness of women. Certainly, I risk overstatement, over generalization. But, I was intrigued to hear a dear friend, S, tell about her challenges with front squats in the gym. I don’t recall exactly the goal she had set, whether it was 1 rep max, or, what, but, in working up to it, she felt the tension rise, and the fear. And she went off to the side and had a little cry and centered up. And after that moment of self care came back and kicked gravities ass.

Persistence – Sarah gets her handstands from Bill Getty on Vimeo.

There is a subtlety to this, that many guys, myself included, miss altogether. Guys tend to kick their own asses into accomplishment. We take ourselves by the scruff of the neck and shake ourselves, tell ourselves to man up, shout a bit, kick furniture or whatever. But, to my mind, this psyching up is similar to Winnie-the-poohing through — not identical, but similar, there is something fictional, or one dimensional about them. Indeed P questions this herself when she asks if she has “tallitude”. I think P is struggling to get to and articulate the more subtle toughness that our friend S was exploring. I’ve seen it in her. But, it is a hard thing to talk about being gentle with oneself and at the same time grapple with the crushing physical or emotional weight of some challenge real or arti-factual.

P, wants to explore mortality and I think that is fine. Seeing ones own death is part of many spiritual practices. Yet, just at the moment I find myself struggling more immediately with the diminished expectations of middle-age, with a life direction etched and changed by disease. I’m not one for attending church, or at least, “church” as we often think about it. Yet, I’m daily in the gym. Is the gym my sanctuary? Are the exercise circuits my rituals? Are the 3-rep max efforts, and the personal records the sacraments? I find my own mentality changing as I mature and I continue with the arti-factual challenges of the weights, of gravity. I scream at myself less, I don’t let the failure swamp me in negativity. Instead, I break big challenges, say 21 reps, into 3 small challenges of 7 reps and I celebrate each accomplishment as I achieve it. If, I truly fail at something, I put it in the future, “I’ll try that again next week, I bet I can do better.” Or, when I hear myself slipping into negative self talk, I turn the statement around,from, “I can’t”, to, “That is really hard, but, I love the challenge!” I think this is closer to the toughness our friend showed when she stopped and relieved herself of the tension and fear, “a little cry” and then went back to the battle. Sure it was the little battle of front squats, an arti-fact of the gym, but, perhaps too an analog to other challenges in her life.

I wonder if because we create micro-environments, like church, or the gym, and practice elements of life in them if we don’t then imagine that life itself is practice for something bigger, hence, heaven and hell. What I’m seeing however, from P’s stories about “angels” (basically, just other folks, whose shit stinks too, but, who, seize the moment to “cry”, or rather to be honest, and vulnerable with another) that really life is enough. Death will take care of itself, but, life, is strange, beautiful, awesome, huge, ugly, frightening, and petty yet absolutely must be attended to.

From Tennyson’s Ulysses:
Tho’ much is taken, much abides; and tho’ We are not now that strength which in the old days Moved earth and heaven; that which we are, we are; One equal-temper of heroic hearts, Made weak by time and fate, but strong in will To strive, to seek, to find, and not to yield.

Another Inspirational Day

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So I have heard that it is a tease seeing only one or two of the panels to this drawing and not the whole piece. Ah, a little temptation on my part. Tune in next time! It is a work in process. My art has always been very personal, and not really much for public consumption, so sharing it in this venue is really new for me. Yea, you’ll have to wait to see the whole thing.

Infusion day angel story #3. It’s interesting, as the panels on my drawing became more fluid, I began observing the angels. Today I met someone during treatment who I’d spoken to briefly a few visits ago. She said that she tried to find me last week, but I was in and out like a flash. This week she came. “I just wanted to say that you inspired me. By seeing you drawing here, I’ve taken out my artwork and have made a commitment to make the time for myself this year. It’s not easy to take that time. I would love to bring it in for some consultation next week. I’m doing a portrait for a friend and the shadows are giving me trouble…”

We had a long conversation about art and other common interests. Part of what makes her an angel is the fact that she has a young downs syndrome child who has battled cancer. She also has 3 other children and a husband among other things. We both agreed that we needed wives. I hardly felt that I needed one as much as she, but if she was ordering one I wanted one too. She’s so right. Carving the time is what it takes. I’d not drawn for several years before my diagnosis last summer. Taking the time to read that book on Sunday is another example. If I blink I’ll miss it. Who cares about the bedroom walls. Meeting her and talking about art and the things that make us who we are was inspiring to me. Another gift on infusion day. It seems that for all these angels in my life they are considering me one in theirs. How sweet is that.

I’m not sure why these past two infusions have seemed to fly by. I bring my ipod and that’s a great thing. One ear plugged in to music I love and some music my loved ones have shared with me, and one ear ready for conversation from the really caring staff. I just make a point of unplugging if I find someone talking to me. I also love doing the panel of the day in my drawing. I do some work-work before the benadryl hits. I’ve got plenty of stuff to keep me engaged. That and a nice cup of tea and I’m really all set. The 3 hours or so passes very quickly. If any of the readers of this blog are interested in seeing the center or what the infusion is like, you are welcome to contact me and we might be able to set something up for one of my remaining infusions. I’m not finding that I NEED company (obviously) this round, but if you’re curious, seize the moment! Don’t blink or you might miss it.

I did meet with our oncologist today, more of a recorded meeting than our casual conversations, however it was casual as well. I asked about cancer markers in blood. Someone had mentioned them to me, but I never heard any of my providers talking about them. She said that for breast cancer, the cancer markers are definitely not the best thing to go by as an early indicator of cancer. (For prostate cancer, liver cancer and others the cancer markers are DEFINITELY helpful.) She used my early labs for an example. At the start of all this when the cancer was growing inside me the “CA 27 2” result was a 26.1 and the expected value is <=38. The “CA 19-9” result was 4 and the expected value is <55. Because of this, my cancer markers “were not specific for malignancy” but there was a very malignant tumor quite alive and thriving inside me. This, apparently, is typical for some breast cancer, and thus would not give us a sense that there was a problem. We will check them out again sometime for comparison.

We spoke about the trajectory from here on. I guess I’m half way through. At infusion 10 there will be a PA visit and at 12 I will meet with our oncologist again. We spoke about how we will keep track of me, and how too many scans mean too much radiation, and this is not good either, so she will most likely use CT scans of my chest, not whole body scans. She indicated that if there is a reoccurrence the best place would be in my chest wall or my other breast because it would be breast cancer (more managable than some other areas and cancers). She said something that caused me to pause, about my cancer, the size of the legion and the node activity that puts me in a “not necessarily cured” catagory like some. So she wants to watch me carefully. She said there’s just not enough evidence that says more scans are helpful. I appreciate her caution. She did suggest scans every 6 months for 1 or 2 years and then maybe yearly and did indicate that right now the marker is still 5 years out for decreasing observation from oncology. I would still work with our surgeon who is a breast specialist for follow up after that.

I have put a link to the song Landslide by Stevie Nicks here. It has always been a favorite song of mine. It felt particularly pertinent to me today because when she wrote it in the early 70’s she was at a decision making point in her life and I think I recall her saying something about knocking her ego down a peg. I can get so wrapped up in the shiny stuff, in the G.O., to the point where I will NOT give the reality of a life threatening disease more than a minute of thought. I can have “tallitude” as my brother calls it, and this feels great. I feel great in my cowgirl boots. But I like the idea of coming down a peg or two just so that I don’t miss the moment. Lindsey Buckingham’s acoustic guitar is such a support to Stevie’s voice. I looked at a bunch of recordings, some with slide shows of Stevie as a very young woman and others like this one, later in her life. I chose this one because I can just relate to the humility I see in her, I suppose. I think about my relationship with B and how he has stuck by me as several landslides have brought me down during our 20+ years. I know why he has stuck with me out here on the east coast. It’s really just a love story.

I know one minute I’m saying I don’t dwell on this too much. I think I mean I don’t let it get me down. Every once in a while I do think about not being around. But when I think about my own death, it has never been something I have felt that is in my control. Oh, other than the fact that I can drive carefully, take care of my body and make low risk choices to help this body endure life. It is weird thinking about not existing any more, but I won’t exist so it won’t be my problem. I just wish that we all could go when we have fully lived our lives and feel in agreement with our tired bodies that it’s time to go. Like Pop and Uncle Charlie seemed to do. I don’t think either of them WANTED to go, but they were ready to go. When my sweet friend Scott died at 42 of a brain tumor, I was certainly not ready to let him go, but he went with grace, never the less. Any one who wants to engage in this topic, PLEASE chime in any time. I’m DYING to talk about it with someone. (pun entirely intended) Maybe Morticia Adams is out there somewhere. She’d love to talk about it.

I just want to say that my life long friend M called to tell me that her biopsy was negative. I had encouraged her to get a specialist involved as she was feeling concerned about something. I was SO happy to hear the results, the joy went deep. The relief in her voice was a pleasure to hear. Thanks, M, for calling me with the results so soon! You are part of my foundation after 40+ years of love.

Thank you for your endurance, readers. It is so comforting to know you are there.

GATOR SKIN Tip from Consuelo

Here’s a tip with copyright permission from a loving cousin and diehard reader of this blog:

For Dry Skin:

Safflower Oil and Olive Oil (virgin) have omega and essential oils but Safflower is orderless, with vitamin E, and you won’t smell like a salad…..I make sure my hands are clean, I put about a dime size worth of safflower oil in my palm, fill my hand with running water wet down my entire face with the greasy water (feels awesome) then wash with mild face lotion while that is still on my face, rinse.

By doing this the skin is absorbing oil while you’re washing away valuable but dirty oil off you face. I’m telling you I have had such an easy time of dry skin this winter because of Safflower oil. I did use Olive Oil extra virgin but it is extremely smelly and safflower has the omega a E just as much as olive oil. I don’t have the super dry pulling of the skin after I wash anymore before applying lotion. It buys you time before you moisturize but in a natural way. Hope it helps! Actually lately my hands and legs are enough to make an alligator jealous and now I put safflower oil on my hands and legs before I go in the shower. Caution, always apply BEFORE entering so no residuals are around to make you slip! Hope this helps,

Love you too much,

P.S. It hasn’t eliminated my wrinkles unfortunately