Ruminations – Page 3 – Riding a new Horse

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.

Hi…

I really don’t have any clue what my mom is talking about. I never sing. She probably just has her iPod in listening to her funky tunes, and mistook those voices for my own. Funny story! My dad told me a joke. An older, kinda dumb man is sitting at the bar when he realizes that he’s gotta fart (bleck! I never do that either). He realizes that there’s music playing, and figures that at a loud part in the song he can take care of his business. So a loud part comes, and then he slowwwwllyyyy lets out a fart. He does this a couple time until he’s much better. He takes another sip of his beer– feeling pretty smug about himself, when he notices everyone in the bar staring at him. He turns around to give them what-for…. and a headphone falls out of his ear. See! It can happen to anyone!

I know that my mom would really like me to share some of my experiences in dealing with breast cancer. I don’t really know how to describe my experience without sounding ignorant. I used to read books about cancer victims all the time. It was something I never believed would touch so close to home. When I first learned of my mom’s diagnosis I was shocked, a little pissed, and sad. I was mad because my mom had never done anything to deserve something like this. No karmic baggage. But really, I was just sad. The word cancer has an echo that sounds just like doom. However, in all this emotion, never, for one second, did I believe cancer could take my mother. She was not going to die from it. I refused to believe it, and that made everything a bit easier for me to handle. I know death is a part of life. I realized that in fourth grade when I was reading a magazine where a body of a 16 year old girl was found on a hill in South America, a sacrifice. It was a weird experience. Kind of difficult to explain. But for my mother, death was not an option.

Sometimes I forget. She’s a tricky lady. She’s so loving and optimistic.I don’t know if this cancer has changed us as a family. But I do know how much love and support there is out there for my mom, and our family. There’s so much love. I want everyone to know that I appreciate everything they’ve done to make my parents lives easier. They’re stuck with two teenagers, and we can be very demanding. Emmitt’s the worst, I swear!

Thank you so much.

I love you Mom.

Enjoying “A”

As I was writing the entry below about the recent infusion, A and I looked like dualing laptops at the dining table. We laughed as she played this game over and over and over singing and singing random songs at the top of her lungs. Her eyes were aglaze. “I can’t get out of this!” You know the feeling you get when you play whatever game is your favorite and just cannot stop telling the darn machine to start another game and you say something like “ok after this one I’ll do my work.” It’s funny to see such an intelligent and at this point motivated young woman mush out sometimes.

She reached over and grabbed my hot cup of tea for a sip as she looked at me with loving eyes. As her lips touched the cup, I told her it was called “smoothe move tea”. She gave the cup back unsipped. B tells a story about when he was in school and some kids kept stealing lunches. So the victim brought chocolate chip cookies in with ex-lax in place of the chocolate. I just could not let her take a sip of that tea, but it reminded me of this funny story of B’s.

I have a really hard time concentrating when there is noise. Sometimes I want music, but if it’s too “bumpy” I just cannot wrap my brain around what I am trying to do. Most of the time if I’m reading, working or writing, I need silence to be able to focus. My daughter, on the other hand, has to have her phone right next to her computer which is playing music and/or videos, a video chat session going and her homework in front of her to get the job done. Have I mentioned she’s a straight A student who, when she entered high school struck a deal with us by saying “If you don’t ask me about my homework, I’ll get it done.” ? So it’s now been about 50 minutes since B and E left for their activity, and the singing has NOT stopped. In fact she has ended video chat with a friend because she just wants to keep on singing and doesn’t want anyone to see her like this…except me, of course. Before B left I kept looking at him and he knew exactly what was going on for me. This is what choosing my battles is about. I could wreck this experience by being cranky about not being able to concentrate, but I’m having too much fun to do that.

For A to say “are you writing about me and my singing?” and to suggest that an entry get devoted exclusively to her, is remarkable. She does not like to talk about breast cancer, and usually does not want me to talk about her to others. At the same time, she is sympathetic most of the time, sensitive to my needs and tolerant of, though not always liking, what is going on. She helps me see when I am being irrational or too sensitive about things. She is a good mirror for me.

How strange it must be for teenagers to deal with their mom’s breast cancer. At a time when their own bodies are weirding out and doing amazing and beautiful things, their mom’s body is being ravaged by something out of her control. Their parents are dealing with a very real and intimate bunch of complex issues. Dad may be scared or at least feeling powerless. Every day they are reminded. For months and months treatment is in the middle of the room. Mom’s body looks and feels different. They are cheerleaders as Mom’s hair grows back. They are unconditional in their loving acceptance of this person who doesn’t look anything like she used to, and who is not able to keep up the way she could last winter. I do not know how families deal with a dad’s breast cancer. I’m sure it has its own story.

If there are things to be grateful for in this pile of dung, one would be that A is 15 and not 5. She has a life, she has interests, she has some maturity, and she is incredibly independent and creative. Oh, I’m sure if she was 5 there would be gratitude as well. I am just so glad she was the little spirit in line next when B and I, well, you know. I’m so glad she was born into our family.

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.

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.

Is it me or is it chemo?

I marvel at whether what my family experiences in my behavior is actually chemo affect or just me. I don’t know if there is a way to tell. It’s so easy to blame the chemo for the crap. (as IF I didn’t have crap before all of this)

As far as the general body stuff, you all know that the dryness is still the biggest thing for me. My family benefits on occasion because I MAY just offer to moisten their dessicated epidermis before they shed like a snake. One has to catch me at a very generous moment as I quickly get bored with the task of massaging others. But when I do, you never know, you might get a good long one out of me. Rare, but possible.

My behavior is under the microscope at times. Perhaps those who love me are so sensitive to the changing tides, concerned for my well being, or whatever. I don’t know how much of this behavior is genuinely me (I suspect 95%). It is so great when I feel normal because life is normal and the “demons” as A puts it, are not in everyone’s face. It gives my kids and B no reason to consider me sick. On one hand, it’s great when I hound my kids about helping out or say no to something they’d prefer a yes to. It means I have enough energy to engage, so it feels great/normal for me, but not necessarily great for them of course. That’s happening more and more of late, I’m feeling more active in the parenting role. But I wonder some times if my clearly “affected” days eclipse the days when I am highly functional and normal. You know the looks everyone gives each other when the pink elephant walks into the room? I don’t want that to happen. YUK. But if they look at each other with “oh brother!” when I crack one of my jokes, or make a face or giggle when I probably shouldn’t…now that’s me.

There are days when people say “I can’t believe you’re doing this” (like shoveling the 16 ” of snow we received last Saturday night with B who turns everything into a workout, or hiking the mountain in the snow on New Year’s Day, or going to work, or preparing food with energy and love, or staying up past 7:30pm). Observing me on these days may be confusing or concerning for some. I don’t know. Similarly, observing me cracking the whip with my kids (can you even IMAGINE that??) or getting irritated when I’m tired and should be in bed, could produce the whiplash I and others referred to in previous entries. Perhaps when I’m doing or looking like something that is not pure G.O. it reminds them that I’m human like everyone else. Darn it anyway. As far as I can recall, I have always gone to bed early and gotten cranky when I was tired.

I vacillate between laughing about chemo brain space cadetism and defensiveness about the assumption that whatever I am doing/experiencing must be chemo affect. I suspect that it will all come out in the wash and sometime next summer when I’m spazing out somewhere, dancing in the middle of a crowded sidewalk, singing a goofy song, we’ll all have a better view of me sans chemo. I will have NO alibi and for that matter, neither will anyone who is seen with me.

Today is Sunday. I stayed home yesterday like a good girl, but I was busy as usual. Today I also stayed home. As B was leaving to pick E up from a friend’s house to take him to jujitsu, I mentioned a book that A told me I had to read before the end of January when it was due back at the library. B said “Why don’t you just read the book? You were all busy yesterday and crashed last night. Why don’t you really just sit and read this morning?” He walked out into the cold morning and A was soundly sleeping. I started by doing my favorite thing, I made tea and got the fires rolling. I sat in the chair and I provided a lap for our girlie cat who is JUST learning after 3 years that we are more than just can openers, and read the book. The whole book. Actually B and E arrived back home literally as I was on the last page. A came downstairs just a short while after this. It was lunch time and I hadn’t raised a hand doing chores or finishing the paint job on the window in our bedroom.

This is pertinent here for several reasons. The first is clearly on the subject of is it me or is it chemo? This could not have happened on the AC chemo combination. I could’t read two pages at one sitting. In fact before chemo it was a rare thing to read 200 pages in a day. The next reason has to do with living with teenagers. The book is among one of the best coming of age books I’ve read. It’s called the perks of being a wallflower by stephen chbosky (1999). As we are dealing with my medical business, our children are dealing with adolescence. What a bum rap for them. They have managed really well in my opinion, but it’s got to suck at times.

Both are maintaining their position on the high honor roll, both are involved in some activities, both are kind to others and seem to be making choices that would make a parent happy. I have asked them both to consider writing about their experience here, and hope at some point that you will have the fortune of learning from them. Those of you who have read through the whole blog have seen some entries from E already. For now, I’ll just say that parenting during treatments is a complicated thing. I never want to be a burden on anyone, especially my children. It’s hard to see a parent vulnerable, and they have been through about 5 months of it so far. I’m so happy to say that at this point the most vulnerable they see me now is tired and bald (well, fuzzy)…so far anyway. Earlier was tougher on all of us.

I’m grateful to A for recommending the book. It reminded me of my own coming of age, and I got a vision of A’s possible journey through several of the characters. I feel that when I told her that I took the time to read the whole book this morning, for the first time in a while she may have felt like she was my priority and this diversion we’ve been on was not completely monopolizing me and my time.

“It” was me today. As I prepare for tomorrow’s “invasion” number whatever, as I am noticing what may possibly be cumulative fatigue, some subtle gut stuff and really tight shoulder/neck muscles, as I hang out with the best katz in the world and invite B for a dance by the fire, as I look at E’s latest math paper and talk with A about her favorite characters in the book, I am feeling mostly like me. I am staying as in the moment as I can get. The crackle of the fire, the purrrrrrrs from the katz, the I love yous from my family, the continued support from people who really care about me. All of this is what will help me shine through as the chemo does its job and ultimately leaves my body.

1/8/10

Feeling better means getting back to work means having less time to do the things I’ve come to realize are SO important to me. And so it is with blogging. I’ve felt real good this week, and have been back to work AT work most of the days. When I picked my kids up the other day after school and took them shopping for some new jeans (they just keep growing for some reason…the kids, not the jeans), we got home after our usual dinner hour and I was exhausted. Oh yea, and that morning D and I did our walk at O’dark:30. Pretty much useless, I ate the great meal B prepared, and crashed in the recliner, a puddle of mush. Yesterday I worked another whole day and thus, I decided to work from home today…but not until after the chiropractor, food shopping and a nice ski with D and our goofy and swell canine companions.

Growing hair is a very serious business. I think the next baby I see I will appropriately hail them for their hard work! Now that I have a little more than a 6 o’clock shadow, I’m antsy for more…MORE…MORE! I never even thought about the process probably because A (our first child) had about 2 inches of hair when she was born and with E, the poor neglected second child, I don’t think I observed as much about the fuzz as I did other things. So this brand new hair is really funky and has started to have a mind of its own. I can keep my hats off in the car as long as the heater is on and at home, much of the time, if I’m close enough to the fire or the wood stove (or having a hot blast). It’s liberating, truly. I must remind myself that it could all fall out tomorrow, though not the usual outcome of Taxol as a second round chemo drug, apparently.

B has referred to Taxol and radiation as the suspenders part of treatment. I feel I’m somewhere in the bog of life between “Oh man, at least this isn’t as swampy as it was earlier.” and “Hey, is that high ground over yonder?” I just keep walking, just keep moving, just keep trudging, just keep laughing, just keep resting, just keep waking to face each day. SO another character that could give you a sense of who I am is ‘Dory’ in FINDING NEMO. She endears the hearts of some viewers and annoys others. BUT her “Just keep swimming, just keep swimming….” song keeps coming to mind as I move throughout my day like when I still catch myself saying “wow this is really happening” as I glance my fuzzy head in the rear view mirror.

I cannot / will not spend a lot of time dwelling on what we have been through over the past 4-5 months. Nor am I spending much time thinking about a reoccurrance, no more than I would wonder about getting hit by a bus each day. I no longer feel like I have breast cancer, but I am reminded every day by one thing or another. My body is my body and I think I’ve adjusted as much as I can at this point. I’m feeling really good still about the decision not to do any reconstruction as I continue to heal and regain my flexibility. I feel waiting on reconstruction has given my body time to heal from one thing. I have not been wearing many layers because of the hot blasts I am getting several times a day. My usual turtle neck and sweater winter wear is still in the trunk in our bedroom. I’m wearing one layer, often just a long sleeved cotton shirt, and have felt fine about my body. It is like I’m not even thinking about it any more. As I’ve said before, I suspect this will resurface in the spring / summer when I wear my bikini everywhere I go.

So in the area of how I’m doing on Taxol after 5 infusions, I’m definitely feeling the extra dryness in my skin that is more than just winter. I’m not feeling tingling at this point in fingers or toes, but am asked that every time I go for the infusion. It is a side effect that I am taking very seriously as neither I nor our oncologist want permanent damage from these suspenders. My several times daily application of skin cream entails pretty rigorous rubbing to stimulate circulation and keep my nerves alert (my words). My nasal passages are still like the desert. I have caught a cold this week, but it feels normal for a cold. I am tired and am intentionally laying low this weekend.