9/30 The Naked Pirate

An image finally came to me yesterday in accupuncture.  I originally was calling it “Dig Deep”.   A few days this last week I felt like I was sinking.  The  earth surrounding me is  not devouring, however.  It is a quiet place, where it’s safe to be with sadness and dark.  I am reaching with my hand and foot for the vital energy that will join with the healing and nourishment of the rich soil.  This particular rendition sort of  looks like I’m a naked pirate on a mission, now that I’ve put it on paper.   AAARRRRR !

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Each time I’ve had an infusion so far, my body / my horse has worked to get itself back into balance.  I am grateful that it has strength to find this each time.  Anyone reading this (that means you) is part of the sky colors, holding my family and I in thoughts and prayers.  This is especially helpful when I and we feel like we cannot hold ourselves up.  I could not ask for more.  We have been shown evidence of your love every single day since we spread the word.

There is a part of this journey that is just mine.  A part no one else can do for me.  I have to dig deep some days to find what I must to cope.  Thank heavens these days have been rare.

Today’s walk with D was especially fun.  I feel like tearing up some carpet now.

9/28 Reaction

Not sure why boys need to get quite so specific, especially with someone else’s stuff (see post below).  However, like pregnancy, breast cancer and treatment seem to shine a bright light on just about everything about my body, so what the heck.  At first diagnosis I was saying ‘never have my breasts caused such a sensation’.   Now whomever reads this knows I have an exhaust system.

The phyiscality of it all gets tiresome.  For someone who has gone through many, many years with a body that was not calling much attention to itself at all, I find the constant awareness of body a drag at times.  Being able to laugh it off, especially after a heavy Sunday, is a blessing, I must say.  Thanks B.

When pregnant, the attention was excited and so many people wanted to touch the orb.  Now under the influence of chemo, so many have been willing to just let me rest my head on their shoulders at a whim. (like on the bleachers at a soccer game) I get compliments from the brave on my choice of doo rag.  And then there are others who just think it is terrific that I’m even trying to be an active mom.  Validation is such a cool thing.  But darn the whole idea that medicine that is supposed to help me heal, is also ravaging through all of my body like a wildfire at times, so that I don’t even recognize normal things like hunger.

Stacking wood when one feels able is also a cool thing and can get the eye back on the prize and out of the discomfort of the moment.  Thank heavens for silly boys and piles of split wood.  Today is a better day.

9/28, Fart Family

P has an excuse she after all is getting Chemo.  I on the other hand seem to be suffering Chemo Covade, or else, just disgusting man syndrome.  Dueling Bugle butts have our pre-adolescent in giggles and our girl-teen completely disgusted — which just may be a symptom of girl-teen.  The toots range from Moose bugles to Goose calls on a foggy morning, and some just squeak and chirp, rarely do SBD’s slide out.  I’m remined of Ludo in “Labyrinth” trudging in the bog of eternal stench; “Smell Bad!”   Walking through a room one can slide into a pocket of odiferousness; wafting and lingering, or perhaps malingering, at any moment.  Farts are funny mostly and since both P and I are feeling low at least we are able to giggle about this mild ignominy.

9/27

K sent this comment via email that I wanted to share with permission:

P and all,

E,  I loved your blog entry and how you looked out over those hills and found some kind of meaning for the steep declines. I never thought that it would be your mother either that would have cancer. I never thought that I would shave any one’s head. I never knew that your mother drew so beautifully even when her strength was tested. Your mom does have one of the strongest physical and emotional constitutions of anyone I know. That will serve her well.   P, the image of your curls next to your cowboy boots is as touching as that little French girl cutting her hair to match her brother’s. I can only imagine the angst of the hair thing, the anticipation, the unknown, the metaphors, the acceptance, the sadness, the acceptance.   P, you wanted a ritual around the shaving and what you got were friends, brilliant sunshine, the cats meandering, basil everywhere and the ominous clipper box that was ready and open.  I wanted to cry for all that you are going through but your bouyancy and your boots overtook the sadness and we dragged out the headwraps.    Love to you all K

When I think about staying afloat in a rough sea, it seems daunting.  Treading water is exhausting, and the life saving float is crucial.  I have moments where the only weird thing about my life is that I’m not working (not that I mind), and that people just keep sending love letters and dropping delicious food off at our house (yummmm and thank you).  I have moments like today where I cry very easily, or just feel really sad and don’t like this, not one bit.  My choice to shave my head was an important one for me.  Empowering, yes, but not something I like.  My friends and E being witness and partners were exactly what I needed that day.

Friday was my first venture out, my head wrapped in a cloth that A picked out for me.  I wore my boots to the soccer game (girls team won 4-0).  My boots had me standing tall(er than usual) and my wrap kept my head warm, protected from the sun, and there was a privacy about it, I don’t know how to explain it better than that.  I had all delusions of grandeur about going to the football game, but I was cold and really beat by the end of the game, so I went home with E.  I put my most comfy clothes on and built a great fire in our big fireplace.

I went to the Fair yesterday, a bigger step into the world.  ‘A’ rubbed my head from time to time during the long drive.  It felt very nurturing, I think, for both of us.  Getting used to a loved one suddenly without hair must be weird.  I appreciate how A and E are evolving and coming to terms with this part of our trip.  I am careful not to appear without a cover as it is fairly drastic.  The fair was fun. I was completely anonymous.  One can do or be anything there, I found it freeing.  When I got home I had an incredible nap.  The kids ended up going to friend’s houses for the night so after friends came to help us consume some of the delicious offerings, B and I got to just be.  I am touching his long hair more,  grateful that he has chosen to keep it for our strength.  I uncovered my head for the night just because I was sick of having something on it all day.  I hated feeling relief and vunerability all at the same time, but I was home, my safest place.

This is day 5 cycle 2.  I have had a relatively mild reaction to chemo this time.  I have felt a tentative sort of relief, with some annoying GI discomfort.  I don’t like that I tire more easily.  I may appear buoyant and graceful, but I feel like I am trudging today.  I think stacking wood and napping will generate a balance of energy for me.  It fits that it is raining.  There are times when I cannot put to words what I’m feeling and that is where I’ve been since last night.  I want to be quiet.

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9/24/09

Did I really get infusion #2 yesterday?

Thus far my body is aware, but the symptoms are very mild indeed, for which I’m grateful, truly.  B and I spend the day going to accupuncture, getting the neulasta shot to help production of white blood cells, eating wonderful chicken soup and taking a nap with our katz.  D and I walked the course in good stride.  I picked a huge tomato that is almost completely red.

Lasagne for dinner tonight, thanks J.  The meals you all are preparing are amazing and are opening up our family’s palatte nicely!

I am cautious about how good I feel.  I’m resting intentionally.  But sometimes when the horse wants to gallup it’s hard to hold her back!

Going to Chemo

          Today was the first time I went with my mom to chemo.  I wasn’t sure what to expect but nothing surprised me. All we did was sit in a room and wait for the process to be completed. Even though there wasn’t much to do, I pictured in my mind that the red liquid being put into my mom’s body, changing into the strong brown rope lassoing the untamed cells. This thought came to me as I remembered the picture my mom drew.

          We were stationed in window seat in the chemo room. The panorama of the rolling hills, and the sunny sky was a reminder that my life would sometimes be one of those hills with one steep up hill side, and one sloping side. But which side was which, sloping, or up hill. This depended on our thoughts, if we just thought that this situation was stupid and then, poof, it would be gone is definitely the wrong idea. But we could also think that, yes, it is stupid but being prepared and aware is the most important thing to do. I choose the down hill : being aware and prepared.

          The chemo suite was a huge part of the building. I think there were about 25 stations where people were being treated. I looked around and saw young people, and elderly people. I thought, why is there so many people here? Why should anyone have cancer at any age? Why should there even be a word, cancer? The last person I ever would have thought to get cancer, was my mom. And somehow she feels in the best shape physically than any other time in her life. I think that it isn’t just physical health. Mental health is, I believe more important that physical health. I think that since my mom is being very confident in herself, that her mental health is the biggest of the two.

            Whenever my mom’s friends and even our family, ask me what I think of this situation, I am at a loss for words. Somehow I don’t think I have any thoughts but as I go to empty them with drawing and writing, I realize that I haven’t done much of it. Should I be more focused on thinking about this, instead of trying to make it seem as though our lives are normal? What I try to do is to not let it eat me up by thinking about it too much. I don’t let it thrive on my thoughts and basically suffocate me. If I do have thoughts I sometimes communicate with my friends. I think I communicate well with my friends because I guess we understand each other well, and also that we may have something in common. By telling my friends, I have realized that some of their loved ones also have had or have cancer. I think by telling them, I feel more confident to share my thoughts with others, not just friends.

            This does suck, but that’s not going to change anything by complaining. The down hill is much easier to walk on than the up hill. Also telling myself that it sucks over and over again is a part of mental suffering. Having mental health is more important than physical health so that I stay healthier than ever before. But having physical health is important too, because walking up a hill is sometimes a lot of work.

Giddyup Cowgirl (Day 1 Cycle 2).

Bald-cowgirl-150x150We did it!

There’s nothing like friends who would shave your head if you asked them to on short notice.   This includes those friends who would try like hell to change their impossible schedule…and alas, have to decline.  Today was the  day.

The infusion went without a hitch.  K drove, E came, S visited with treats.  It was wonderful…the love, company and support I mean.

I could pull pinches of hair out as of 2 days ago, but this morning it was a little easier to do.   I think it creeped some of my family out, actually.    I’m surprised it didn’t all come off in the shower.    As we drove from the cancer center, I knew it was the day.  K  had a bit more time, D was between gigs and accepted the invitation willingly.  E went on his bike and made trails in our woods…  Once it was over, I felt nothing but relief.  I walked to D’s house with some Baldy Pesto, and felt strong.  Anticipation gets me every time.   Now I get to adorn and wrap with beautiful colors.  I also think it feels cool when I rub my head.  AND I can finally look at the scar that’s been on top of my head since I was 8.   Simple pleasures.  Whodathunk?

It’s about 3 hours post infusion now, and I have a  headache.  I think the katz and I will take little a  nap under E’s loving and watchful guard.

9/23, Cowgirls, magic, and biblical ironies

Day 1, cycle 2, I think if we were to ask P if she were nervous, or something like it, she would deny it.  But, after these few years, I can detect a layer of subtle anxiety.  I think it is kind of like when sparring and somebody demonstrates that they can land a solid blow on you – at will.  There is a wariness that one develops from that experience.  It doesn’t mean you won’t spar with that partner, but, you have a healthy fear.  I think that is where we are at.  I’m not sure how to create a CowGirl analogy here other than to say that you have to get back on the horse that bucked you off.

The whole hair thing is becoming an interesting issue as well.  It is complex.  I think there are issues of gender identity — many women are their hair in a way like many men are their baldness.  Perhaps it  is a way to obsess over something that doesn’t really matter and so wrangle with the neurosis inherent in poisoning yourself to heal – a distraction.  I think keeping the hair around as long as possible is also a denial – “I’m not really fighting a disease and this isn’t really happening to me.”  Denial and rationalizations are the two sides of the same coin – I think.

From “The Big Chill”:

Michael: “I don’t know anyone who could get through the day without two or three juicy rationalizations. They’re more important than sex.”

Sam Weber: “Ah, come on. Nothing’s more important than sex.”

Michael: “Oh yeah? Ever gone a week without a rationalization?”

P wanted as she does, to turn the head shaving into this big ritual – a circle of family, drumming, probably chanting.  Alas, neither A nor I were really able to accommodate that, E was still in bed, but, he might have been more sensitive.  A dear friend, K,  is taking P and E to Chemo today and another friend, S,  is meeting them there as well.  Full house, therefore, I’m at work.  I suggested to P that she shave when she got home, before the drugs kick her butt – perhaps K and E can help here with that.  I wonder what I will find when I get home?

I have little patience for the Bible, but two stories I like, and they are related, are that of Samson and of the Parable of the Talents – wisdom is where you find it and if you are smart enough to pick it up.

Samson and Delilah Judges xvi, 4-20.

And it came to pass afterward, that he loved a woman in the valley of Sorek, whose name was Delilah.  And the lords of the Philistines came up unto her, and said unto her, Entice him, and see wherein his great strength lieth, and by what means we may prevail against him, that we may bind him to afflict him; and we will give thee every one of us eleven hundred pieces of silver.  And Delilah said to Samson, Tell me, I pray thee, wherein thy great strength lieth, and wherewith thou mightest be bound to afflict thee. And Samson said unto her, If they bind me with seven green withs that were never dried, then shall I be weak, and be as another man. Then the lords of the Philistines brought up to her seven green withs which had not been dried, and she bound him with them. Now there were men lying in wait, abiding with her in the chamber. And she said unto him, The Philistines be upon thee, Samson. And he brake the withs, as a thread of tow is broken when it toucheth the fire. So his strength was not known.  And Delilah said unto Samson, Behold, thou hast mocked me, and told me lies: now tell me,… And it came to pass, when she pressed him daily with her words, and urged him, so that his soul was vexed unto death; that he told her all his heart, and said unto her, There hath not come a razor upon mine head; for I have been a Nazarite unto God from my mother’s womb if I be shaven, then my strength will go from me, and I shall become weak, and be like any other man.  And when Delilah saw that he had told her all his heart, she sent and called for the lords of the Philistines, saying, Come up this once, for he hath showed me all his heart. Then the lords of the Philistines came up unto her, and brought money in their hand. And she made him sleep upon her knees; and she called for a man, and she caused him to shave off the seven locks of his head; and she began to afflict him, and his strength went from him. And she said, The Philistines be upon thee, Samson. And he awoke out of his sleep, and said, I will go out as at other times before, and shake myself.  And he wist not that the Lord was departed from him.

Those of you who know me, know well, that strength is an attribute I celebrate and admire.  But strength for most of us is not magical or a gift of god, but, something we work for everyday.  Strength comes with a high price, exhaustion, pain, workouts with intensity that leaves you near black out, or, vomiting.  Samson it seems not only had great personal strength, but, he was a great martial artist, and a guerrilla leader.  Talents that he took for granted and perhaps even resented.  His Nazerite vow was imposed upon him by his parents as an infant.  In a way this story of Samson and Delilah reminds of the goofy movie cliché where the bad guy has the ultimate weapon of doom and it has weirdly a self-destruct mechanism.  We see this with our Sports hero’s too, they have pre-game rituals and superstitions.  Magic as it were.   Magic, perhaps, to explain extraordinary talent, and magic to explain extraordinary weakness.

The Parable of the Talents Matt 25:14-30

The parable tells of a master who was leaving his home to travel, and before going gave his three servants different amounts of money. On returning from his travels, the master asked his servants for an account of the money given to them. The first servant reported that he was given five talents, and he had made five talents more. The master praised the servant as being good and faithful, gave him more responsibility because of his faithfulness, and invited the servant to be joyful together with him.

The second servant said that he had received two talents, and he had made two talents more. The master praised this servant in the same way as being good and faithful, giving him more responsibility and inviting the servant to be joyful together with him.

The last servant who had received one talent reported that knowing his master was a hard man, he buried his talent in the ground for safekeeping, and therefore returned the original amount to his master. The master called him a wicked and lazy servant, saying that he should have placed the money in the bank to generate interest. The master commanded that the one talent be taken away from that servant, and given to the servant with ten talents, because everyone that has much will be given more, and whoever that has a little, even the little that he has will be taken away. And the master ordered the servant to be thrown outside.

It is ironic perhaps that Samson’s fall is seen rather like the 3rd servant.   I say ironic because the Old Testament “G”od , a wrathful and jealous one, seemed to love him in spite of his weaknesses, arrogances, and appetites.  And the New Testement “G”od one allegedly of love and forgiveness would seem to cast a person like Samson into darkness and suffering.  Certainly that is the human justice we love to see in our celebrities and reality TV.  The rest of us who have to work hard for strength or insight like to associate ourselves with the hard working servants and imagine fairness and justice in the universe.  Although this story of Samson’s fall fills our minds, we should not forget his success as a leader, a martial artist and a strong man – he led his people for 20 years after all.  Perhaps, he like the first servant doubled his masters’ investment – in spite, and perhaps because of, his human frailties.  Cancer is neither fair nor just and everything about it is ironic –our own bodies run amok against ourselves.

Perhaps it is extreme situations and how we play to our strengths, our unique geniuses, our talents as it were, that we will be remembered for?

So the question becomes how we manage our magic so that it gives us confidence, but, does not replace the thing it is meant to invoke?

If we shave P’s head, what remains?

In truth, I think we are left with a Winnie-the-Pooh, just bald, and for it perhaps all the more Winnie-the-Pooh.  The hair, no more than the disease, describes P – and yet, both are her as well.  I think the beauty of Samson’s story is that there are no lessons to learn, just a life to observe.   A life to reflect mine against an imperfect mirror as it were.

Cycle 1 Day 14

Today is the end of cycle 1.   We have made it around this course once, in really good shape.  I must say that days 5-14 were very nice indeed.  I’ve got a ride and lots of company for tomorrow’s infusion.  I’ve got an idea what meds, ginger concoctions, massage and breathing might be helpful this time.  I don’t feel like I’m so much in the dark.  It doesn’t mean I won’t be uncomfortable.  I just have some idea what to expect.   We’ll see if this cycle is like the last one at all.  I do not feel dread as some have asked.  I’m very much in the moment and still full of G.O. energy.  I’m on the horse and she and I are acquainted.  GIDDYUP Girl.

“Rooted “ was inspired by my walks this morning.  The trees are getting Rooted-150x150ready for colder weather.  As they loose their leaves,  I will loose my hair.  Not that you need to know this, but my cycles are often on with the moon.  I mention it here because I feel strength in my connection with nature, and so it is with the trees as well.  If my calculations are accurate, I may be sprouting in the spring.  That works for me.

Thanks to all of you who made this first cycle so comfortable for us.  People continue to blow us away with thoughtfulness.  My big brother commented on the previous entry about the giving that touches me so.  Even just writing about THAT gets me started.  Jeepers.   I love kindness.

Off to yoga now, but I wanted to give you a couple updates:

KITCHEN UPDATE:  On Monday I was able to make a whole BUNCH of caponata, I got the peppers pressed with salt for pickled peppers (which were just processed today), made a great pot o sauce with sausages and meatballs AND a killer eggplant parm.  Am I in heaven?

BLOG UPDATE:  Obviously,  B is playing with the format, something he loves to do.  Please let us know what you think.  The spot that looks like a small paper tacked to the post at the top right is the comment link.  Please feel free to comment, we actually love it when you do.  It goes directly to our email, and it gives us a sense that someone is out there.

WALK FOR HOPE UPDATE:  Our goal was 15 team members, and as soon as I fugure out how to put B, A and E on the team, we’ll be up to, I think, 17 members!  We started with a $500 fundraising goal and kept upping it.  Our goal is now $2,000 and we have already collected $1570.  This is so COOL!

9/20 Green Tomatoes and Hair Energy

Of course I cannot just keep this blog about cancer.  Life goes on and anyone who knows me knows that I’ve been steeped in the kitchen, and vow to keep my grandmothers’ italian kitchens alive.  This morning is chilly.  I love this weather.  Those of you in the northeast know the delay to our growing season which was caused by rain and more rain in June and July.  So now we have beautiful tomatoes, most of them green.  While the katz and I were rolling around in the morning light, I decided to make some fried green tomatoes for breakfast.   We did the usual flour, egg and and seasoned breadcrumb covering and fried them in olive oil.  They were a bed for the over easy eggs topped with grated Parmesan, fresh RED cherry and sun-gold tomatoes and some fresh basil.  It was really tasty.  I saw Julie and Julia last night.  Loved it.

The hair thing is interesting.  As many of you know I’ve chopped all my hair off.  This has been a great thing for me.  Not only is it fun to have short hair, I loved it when my friend S told me that with my baseball cap on I look young enough to be a boy.  She said it with such endearment in her voice, I wore it like a proud pony.   I feel like it’s given me strength to surrender something that has, in part, defined me on the physical plain.  You know that I don’t usually fuss with my hair…like not at all.  I am happy to say that I have come to love its color and texture (that took some time).  The messier the better.

My hair is still holding on.  Even before all of this, I had thought with great compassion about what it must be like deal with hair loss.  Whether it be related to aging, allopecia or other medical reasons.  I never imagined that I’d have to deal with it…my family is hairy.  Honestly, it is the thing I look forward to the least.  Give me nausea.  Hair loss?  I don’t think so.   I suspect that once it happens,  I’ll be able to get on to bigger and better things and that will be that.  UUUUGGGGGGGGGGHHHHHHHHHH.  Admitting this to myself and YOU is important for me.

While at the Jr. High picking up E the other day, I saw children frolicking about on the beautiful green grass behind the school.  A group of girls was running and laughing and one of them had no hair.  E said something about her having cancer and how he admired her for the courage to just go on with life as a baldy (my term).   I watched her for a while.  She taught me a lot about what is important just in the 3 minutes I sat there.

When I was probably 9, I did the 70’s thing and got my long hair cut into a groovy shag.  Mr. Marconi  had the male pattern baldness thing going on big time, and we used to talk at the neighborhood lake about his hair and my hair and he told me if I ever cut it off that he’d love to glue it on his crown.  So I brought the bag of locks to him after my back to school hair cut.  He cried.  Mind you, this was not a sacrifice but an offering on my part.  I HAD to have a shag.  No sweat off my brow.

My colleague, a cancer survivor, sent me this 1 minute clip before I left work.  I cry every time I see it.

A’s sacrifice still chokes me up and probably will indefinitely.  On Friday at the soccer game, her good friend who clearly loves me,  ran up to me, her once long blonde hair now shoulder length.  When she hugged me she tapped my shoulder and whispered in my ear that she did it for me.  Why does this bring tears to my eyes every time?

hair-energy-150x150I drew Hair Energy before chemo started.  I was not going to put it here because it’s kinda creepy with no face and all, but it’s part of what I’ve been visualizing.  I have learned that hair loss is common with the chemo drugs I am given because they go after fast growing cells, like cancer, cells in my intestines, blood cells and hair cells, to name a few.  This is why getting a shot to inspire my bone marrow to produce white cells 24 hours after the infusion is important.  This is why there is such gastric distress.  This is why I have thought a lot about losing my hair.   I’ve got the clippers ready and some days I just want to get it over with instead of waiting.