Events – Page 3 – Riding a new Horse

Bravo

Thank you L for the surprise visit. Thank you for the rose and pussy willows. Thank you for playing the harp for me as I drew the final panel AND for your gift of music for all who were there today. Thank you for your support. As a sister-in-the-know your story provides us with an experienced lense to look through during all of this. Thank you for being part of the clinical trials years ago which make my treatment probably easier than your own.

Thank you S, cancer center volunteer, sister-in-the-know, who celebrated 5 years out during my treatment. Thank you for bringing your sweet dog around to all of us, her energy is so therapeutic. Thank you for your gift today. Let me explain: S brought me a box and told me that she just had to share something with me. When I opened the box and we looked at the angel figure (you can’t really see her wings here) and at my drawing we shared a glance and a smile. There was no whiplash.

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Incidentally, I was given a different angel of this series at the start of my treatments. She’s holding a lantern which has illuminated the dark times. (Thank you to another S for that one!)

Thank you J, patient navigator, for dropping by to show me your artwork and for talking art with me. I look forward to lunch sometime.

Thank you K, my very own nurse. Our conversation today was poignant and heartfelt. The ending of this treatment is bitter sweet. More sweet than bitter, because I know where you work and will certainly fulfill your wish for visits.

Thank you volunteers and nurses for the great balloon that you signed. The katz are playing with the tail and E wants to suck the helium out of it, but I’m not ready to share it. Mostly thank you for all of your TLC. You are an excellent staff.

Thank you friend S for taking me out to lunch, for the flowers and card, for your attention and our growing friendship. It was lovely to receive your celebratory energy as I walked into the restaurant. I can’t wait to make you a cheese bread!

Thank you readers of this blog for supporting my artwork. This particular series was so exciting to do and return to each week. Some waited with baited breath for the next panel, and the anticipatory energy was really exciting for me. The finished work is 10″ in diameter.

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I was also working on this pic of my boots since the beginning, it was the other part of my view during the infusions.

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Thank you B, A, E, Chang Tzu, Guiseppi and Sofia, friends, family, loved ones for helping me through this particularly challenging part of the journey. It feels like a big chunk will soon be behind me and us.

Thanks Body for tolerating the invasions. This part is almost over. Each step we take this week will take us beyond the 7 day cycles we’ve been on for 3 months. Bravo.

Eye on the ball and living in the moment.

Cheesebread really comes out better when you let it rise two times. I was making the bread yesterday for the staff at the cancer center and A asked if I would make one to go with the soup she was going to make for dinner. If I let the family bread rise twice it would have taken too long and the meeting B was having at 7 at our house would have bumped into dinner time. SO I let OUR bread rise only one time. It was tastey, but the second bread was BEAUTIFUL. I bagged individual pieces this morning and put them in a life is good bag and handed them out to the secretaries, nurses, vounteers and technicians at the center. Today is Presidents Day and the center was to be closed for the holiday except they had too many medical oncology patients to accommodate and thus some staff came in to work. The other parts of the center were closed. It was just the right day to bring a gift of gratitude. They were so appreciative and if you’ve ever had Nonni’s cheese bread, you know why. It’s the ultimate.

All went well. Several “special” folks came to me to comment on this being #11 of 12. We started talking about the transition and saying good bye. It was really natural and groovy. I wore my favorite blue Keen shoes with no socks as it felt like spring to me. I didn’t feel like I needed ‘tallitude’. Several came to see the drawings I was finishing up and, of course today’s panel.

I walked in the house after the grocery store after the infusion and E said “wow, Mom, you look tired.” I said “yea, I ‘m going out for a short walk with D to get some fresh air and move my body and then I’m going to cool it for a while.” He brought his bike along with me and ended up going to hang with his buddy, who happens to be D’s son. I went further than I intended to but felt so much better after fresh air and wonderful conversation. And now me and the Kat-man-doo, our big siamese are hanaging and resting. It will most likely be just B and I for dinner which is perfect.

All’s well. This is Round 2, Cycle 11, day 1. These cycles are 7 days. Pretty soon I will have a day 8 which will be the furthest away from chemo that I’ve been in 12 weeks. Just the thought of that makes me smile. I can do this.

Manifesting energy and making lemonaid

It’s like the problems with the port-a-cath are a thing of the past. By living so in the moment, I have had the good fortune to celebrate with the nurse when there is good blood return. I either have to get a life, or I’m doing something good for me. Celebrating anything is good for me.

You know the whole thing about not wanting to jinx something by saying something? Well tra la la to that. I just have to say it’s wonderful when there are no hitches. My energy has been plentiful all day. My spirit content and very much in the moment. Symptoms are relatively manageable.

Yesterday D and I got our arses in gear and took our hour long walk on the road. It felt great in so many ways. Moving is good medicine for me. Today I was a good girl and went to chemo, went to work until about 2 (had some wonderful and funny women doing walking lunges in the hall after supervision), went home, worked more, and went out at o’dark:30 in the PM with D. It was unusual walking into the dark rather than into the light, but man we both felt great. That I have energy to do this is something for which I’m truly grateful. And D, I am grateful for you. Thank you for loving me and meeting me at all hours of the day, in the freezing cold and in the sweaty heat of July for the past 10 years.

Today’s image, as the last few, just poured out of my pencil box. It is oozing into the next panel, and I just went with the energy. Now that I can fathom the last infusion, I feel much more fluid. The beginning of this round was much like starting a labyrinth. Knowing how AC affected me, and hearing so many different reactions to Taxol, I wasn’t exactly going in blind, but I certainly found that I was kind of peeking around corners to see if the symptom fairy was ready with her stinger. The first image, if you recall, is very static, and illustrates this feeling well for me. I was open, but certainly not fluid, in hindsight.

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I’m totally drawing about rebirth. B says that we are finding a new normal. My plans for drawings rarely materialize. I chose to let my energy, my hands and the colors tell the story, not my head. The still quiet of the previous panel was certainly not the energy today. I’m moving, I’m doing, I’m resting, I’m holding on. It’s a little on the edge of risk which I love. The bedroom project is on the front burner again. I’m feeling competent at work. I have no room for negativity and self doubt at this moment. It feels good and right. It felt great to go to sleep last night, it feels great to be awake right now. I’m getting lost in music, finding myself just dancing in the kitchen or singing like a rock star in my car.

I was talking during our walk today about the whole reconstruction, prostheses or nothing issue. I continue to feel that for me not doing reconstruction has been absolutely the right move. I’m still doing scar massage, so intrigued by the sensations that DO exist and those that don’t. I’ve given myself time with this new body with no intrusion and that’s been right for me. Everyone has to find their right. Rushing into a decision I was not at all ready for, and not convinced that I even wanted, would not have been true to me.

If reconstruction gives me a perky breast, it’s 47 year old partner will not be able to keep up if you know what I mean. Even if I become a work out fiend when this is all over, breast tissue just is not muscle, and without external cables or a good underwire, I cannot imagine symetry will be sustained as the years go on. The potential hassle and risk of reconstruction for one side which will never have sensitivity just doesn’t fit for me. I’m thinking more about talking with the “fitta” and just doing some dry runs . This for me is mostly about clothes fitting. Summer clothes, I mean. I could go with the non fitted sort of summer stuff, but I don’t want to overlook the possibility of symetry as well. If I find stuff that can work with an asymetrical shape, I may just go that direction. It’s my body and I don’t really have a need to hide anything. Sure, it would be nice to get attention for looking good in my clothes, but I get the attention I need most of the time from the people who matter to me most. The way I look has never been the most important thing to me. My good friends and family know I’d rather wear warn holey jeans and a t shirt that’s been through the wash a few hundred times.

This is the reality of breast cancer. I don’t need to be a poster child, that’s not my mission here. I want to be comfortable with myself. That IS my mission. I will talk with some women who have gone with the body as it is and will let you know what I find out. I love hearing how others have coped as we look at our new normal. Cancer and treatment are no fun at all. What remains is what is. I’m making lemonaid.

Appearances

My hair is sort of coming in and falling out and light on the top and dark on the sides and really fuzzy and funky. I get tired of wearing stuff on my head, but really need it there for warmth. My thermostat is just in malfunction mode at this point, and most of the time I’m really cold. My eyebrows never really fell out completely and seem to be thinning again. I am really interested in how mindful I am of the hair stuff. Oh, I get by. I have hats I love to wear and some scarves that actually stay in place. I still have absolutely no interest in wearing a wig. I get tired of having stuff on my head, but cannot do without it for long, purely for the heat retention function. My friend and sister-in-the-know said that losing her eyebrows and eyelashes was the worst of the worst for her. While I’m not completely bald in those places, I’m definitely not bushy. It looks like some features are fading away when I look in the mirror, and that’s just weird.

I went to a party last night where a bunch of people dressed up all groovy and 60’s like for a friend and colleague’s retirement celebration. I went straight from work, having grabbed our Marti Gras peace sign beads from the cabinet in the morning. So I sort of looked like I was groovy. (I mean I’m always groovy, but you know…) My doo rag was among several others, and I was loving that. I hadn’t seen these folks in many months, several of whom have been in the stampede with us. It was wonderful to be with the celebrant as well as others and to feel so good at 6pm on a Friday. I was fortunate to receive warm welcoming hugs from many people. Someone I had not seen in a very long time, (like 2 years) who also apparently has not learned of our ordeal, was sitting across the table from me when we sat to have dinner. When we made eye contact she said something in passing about my appearance, not thinking twice that anything was up, and immediately went on to talk about our mutual work interests. She had no clue. But I did think about what affect such a comment would have on someone feeling more vulnerable than I. She meant no harm, that I have no doubt about. She was happy to see me and we had a great conversation about what we were up to on the work front. I actually sort of made a quick evaluation about whether to “go there” with her, and decided not to. We were having too much fun.

What she said exactly is not important. She did make me think. When I left the party, I wondered about what, if anything, I might say to a colleague if I saw her having what might look like obvious chemo effects or perhaps something less obvious. “I notice that you have no eyebrows, did you have another bout with the wood stove?”

I do love it when someone notices my sideburns and wants to see the latest mutation of hair. It’s like they are the hair folicle cheerleaders. Come on, you can do it! I enjoy the indulgence when people fuss over stuff like that.

I think what people see in me is someone who is not necessarily set back by an obstacle. They see something beyond my appearance. They see the G.D. optimist each time I show up somewhere. They see someone living in the moment. There is no dwelling in this reality for us. That’s why when I chase shiny things I don’t look back. You should see me during firefly season! It makes B crazy sometimes. Like this morning when I started making breakfast and something shiny caught my eye…

He wears pink high tops

We have been so fortunate to have been assigned a wonderful nurse who is usually the one who works with me at each infusion. She told a story today of being at the gym and seeing a young man (late teens early 20’s) who was very handsome and buff wearing pink high tops. A few days later he had different sneakers on with pink laces. SO she asked what was up with the pink. He told her that he wore them in honor of his cousin with breast cancer. She thought it was very cool that he would do that. Another young man, who was much smaller and not as buff, apparently, said something to the effect that he could never pull that off. I can’t remember exactly what he said, but it was really funny. When thinking about the young guy wearing pink sneakers, I love how diverse the support for breast cancer is. I will miss this nurse when the invasions are over.

Another one without a hitch. I am so thankful. While I was there a woman brought her therapy dog around. Ruby is a cocker spaniel and is so incredibly sweet. What’s sweeter is that Ruby’s human just celebrated 5 years cancer free. She and I spoke a lot about what good news that is and yet how it still looms in her mind, especially around times when she has scans. She spoke about living in the moment, so beautifully. She looked at my artwork and said that she journalled through her infusions too, and feels that is what gave her the most strength.

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When I drew today it came out quickly. It feels like a transitional panel, like a way to get ‘there from here’. It does depict the feeling of floating that I have, just going through the motions until the last infusion. I must say that having 3 hours to do stuff like draw and read when I’m not working, will be missed and I will have to make a point of carving out time if it is to continue. The inaction in the drawing is necessary, conservation of energy and all. But it can be BORING as B suggested in the last entry. Mind you, I’m not bored. I can’t imagine that… I just prefer to be active.

While I am very patient with others and with myself usually, it is balanced with thoughts of “OK, come on girl, let’s go. GIDDAY UP now.” Funny, that’s what I say to myself when I don my boots and head out on infusion day…

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.

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.

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.