It’s not the what? It’s the how. It’s not when? It’s now.

December 1, 2009

How do you free yourself from an experience? I have loads of them I have sloughed off, can’t recall unless someone reminds me and even then it’s sketchy. Almost all of my elementary school through college is vague and disappearing slowly. Unused. Then there are the experiences that I’d like to release and yet they have burrowed so deeply inside me that they are no longer memories, or feelings, but have become part of my DNA.

I’d like to free myself of the experience of cancer. Not because I am not proud or grateful for some of what came from it. But mostly because I get fearful that if I spend too much time thinking about it, it’ll come back. Obviously, I can’t walk away and every day I think about it, more than once for certain. Really I just don’t know what to do with my experience of having had cancer now. And I do feel like I should do something with it.

You know those tea bags that have the little fortune dangling from the string. Well, I can’t help but see them as a particular message meant for me (because I happened to grab THAT very tea bag) at that very moment. Superstitious much? Yep. Anyway, tonight mine said:

To learn, read

To know, write

To master, teach

Okay got it. But teach who? teach what? teach where? And is that even it? I just dont know. But I sure would like to think that there was something meaningful to do with this experience rather than try to slough it off.

Something will eventually come to light, the path will reveal itself… I just need to drink more tea, that’s all.

I hope you had a lovely Turkey day if you celebrated it. I Hope you had a lovely Thursday if you didn’t.

My holiday blessing to you:

“Let us rise up and be thankful; for if we did not learn a lot today,

at least we learned a little, and if we did not learn a little,

at least we didn’t get sick, and if we got sick at least we didn’t die, so let us be thankful.” (Buddha)

Done wishin: In Remission

October 21, 2009

“Out of need springs desire, and out of desire springs the energy and the will to win.”– Denis Waitley

I win, you win, we win!

I got the call from my excellent Dr. Oncologist who reported that the radiologists that went over the PET and CAT scans with their fine toothed combs came back with an all clear, all gone, all be happy!

This is a short and sweet and happy post to say. YAHOO, WOOOOOOHOOOO, HALLELUJAH! Good riddance… goodbye cancer! HELLO second lease on life!

And hello to any and all that want to come visit, talk, walk have a glass of wine and a cup of coffee (both really good for getting rid chemo brain) and just appreciate, love and be with each other.

Thank you all for your various ways, thoughts ideas, and unending ever flowing support and BELIEF. Sweet Jesus we rock, huh?

Besos, smootches, hugs, and raised glasses!

remissionthe harder you fall, the higher you bounce

The sun, the moon, and the truth

October 15, 2009

“The sun will rise tomorrow. It always does, and all the wishing in the world for the way things were, or for what they could have been, won’t change that. It won’t change how things are.” – Elizabeth Scott

Tomorrow I get my CAT/PET scan. It is the definitive answer to the question of the month: whether the cancer is truly gone? Like I said before; I feel in my heart of hearts that it is, but still need the technology to confirm it.

The other day while out on a walk up lovely Mt.Peg, my mum asked whether the physical or the mental/emotional part of this cancer journey has been more difficult. There was no time spent retrieving the answer. The physical has been a breeze comparatively.  My body seems to heal pretty darn well and fast, the chemicals and poisons seems directed to the right places for the most part and don’t bring too much extra damage. I have been told throughout this entire journey how I look quite healthy. I have my muscles, I have danced, and I have hiked the little Woodstock mountains throughout this.

The thing I have found is that the body does heal. The scars are there for sure. They are real, they are red and sometimes angry looking: but they are the testament to some serious healing. And, aside from in the initial 6 weeks after my liver surgery, there is no worry of the wounds  doing anything other than healing. This is true for all the physical scars I have amassed throughout my entire life. This is true for you too, right? Unless you had a tendency to trip, or fall often and that pesky chin wound (that almost EVERYONE seems to have, except me) seemed ever present. Regardless, whether somewhat disfiguring or not, the physical scars heal and you and I and everyone in the world can SEE it and FEEL it.

The mind however… the emotional wounds of the past and present, whew. Well those are a bit more murky now aren’t they? Emotional scars do have a tendency to reopen. Those scars are so hidden and buried in soft, dark nests within us, that sometimes they don’t get to be exposed to the air, to the LIGHT in order to heal properly.  Often, just when I think I have healed everything; done my time, my therapy and let go of regret, blame, anger, resentment… POP the wound bursts open and I am left with a mess I am trying to re-suture in the pitch black of my psyche.

When I had my hernia operation  some gortex patches were put in to keep my muscles and intestine stuff together. Throughout this last 10 months I have been sometimes searching for, and sometimes avoiding, looking for the patches to tighten up those internal emotional wounds and let the scars do their beautiful scar thing. Huh?Beautiful scar thing? By its nature “scar tissue is stronger than regular tissue. Realize the strength, move on.” (thank you, Henry Rollins).

I don’t mind the physical hurdles, I am certain my body will do what it is supposed to do, heal stronger. I am still learning how to apply that to my heart, mind and the little kid in me that is looking for the gortex. It’s just that sometimes I would rather feel nothing than have to go through the ups and downs. A metaphorical example of this is that I am inclined more to a “french” bathing program. Luckily for me (and my family and friends) I am not a stinky person. However, it is not that I don’t enjoy a good shower, or bath. In fact I love a good shower or bath…really love it.   The problem lies here in; I hate the cold feeling of getting undressed to get into said shower or bath and I abhor the painfully cold feeling of getting out. So therefore I don’t go in often. Seriously. Metaphorically this stands true for a fair number of things in my life. I would rather not feel really good at all than to have to go through feeling bad/uncomfortable for a while.

BUT this has not always been true for me and now I set to work trying to find that person/kid/girl/woman who didn’t mind the stripping down and leaping in (literally and metaphorically ) because somewhere in the journey something was going to feel really good and bring lots of LIGHT and LOVE.

“To do anything in this world worth doing, we must not stand back shivering and thinking of the cold and danger, but jump in, and scramble through as well as we can.” – Sydney Smith

fingers crossed in prayer

fingers crossed

Come with me, take my hand, and we’ll run!

September 28, 2009

Optimism is the faith that leads to achievement.
Nothing can be accomplished without hope and confidence.
-Helen Keller

I am ready to hold hands with Roger Daltrey and sing out “ I’m Free… I am freeee”. And in many ways I am free, but I still have a CAT scan to pass and to get my skin brooch (metaport) removed.

I am feeling a huge mix of relief, nausea, excitement and exhaustion. On Saturday the visiting nurse didn’t show to release me from the cleano for almost 2 hours. I however, was so ready (and able, after 12 of these), so I unhooked, flushed and bandaged myself as soon as I realized she was one minute late. I have to say, it was extremely cathartic to take the situation into my own hands, to reclaim the power over my body.

We live in such a busy world. Moving here and there constantly doing this and that, constanly letting parts of ourselves slip away. If you are cuddling papa or a mother…a nursing mother… whose body and time provides necessary comfort for those around you it is even easier to lose sense of yourself/ your body. Nine months of medical intervention, chemical pushes, and surgeries can certainly detach a person in a variety of known and unknown ways.

Remember how things still felt new when you were small? Even though you may have experienced them one or more times before. The first day with out shoes in the spring, dew on the grass, cold and wet between your toes. The way a cool sheet falls against your still legs when some one tucks you in. A lost tooth and the way your tongue fits just so into the emptiness, looking at an insect for undetermined amount of time from about 2 inches away. The mystery and dance of dust motes in the light of a still moment.

A new day. There used to be a time when each one of us bounded out of bed to greet the new day, and whatever it had in store for us. Perhaps a pirate fight, a thunderstorm that carried the weight and smells of energetic ions, a rousing game of tag, some time gathered in anticipation around the easy bake oven. No matter what the adventure, we jumped each sunrise at the chance to HAVE that day, to live it. And sure, our “grown-up” responsibilities are tenfold; our time isn’t spent absorbing the wondrous dance off dust motes… But it could be a little more right?

Lovies, I have this chance of changes and newness; metaphorically, spiritually, intellectually and physically. The question keeps returning “how to make it so”. How does one not fall into the same rigamarole that got me here in the first place?

Well, here is my proposal. Each and every one of you has climbed this mountain with me. You have held my hand and I have held yours, you have pushed me forward when I was feeling logy, you have expressed pride and adoration and you have cheered and smiled at all the successes.  Time is too short to wait for perfect moments. Let’s support each other in doing the things we want to, long to do. Take the risks that make you uncomfortable. Help me, help you, and help each other. It isn’t and won’t be easy. These are muscles that have gotten little use for a too long while. Practice patience, love and humor with each other, and with your self especially.

Now is the time, learn to play guitar, try out for the play, lie out in the grass holding hands and watch the clouds go by, even if it means being late for dinner.

Yeah, maybe it seems unrealistic and impossible to live life to the fullest to appreciate each butterflies journey though your eye line, each mote afloat, each moment to run free: and at the same time continue to provide and live a financially viable and successful life. Probably. But I say, what the heck, I can’t think of a greater bunch of people to secede from the union and start our own utopia with.

Ps. don’t forget to dream.
figure head lina
Freedom is a body’s imagination
Freedom is a full-time occupation
Freedom’s in the state of mind- (Shenandoah)

goodness, that finish line does glow

September 24, 2009

This is a super short one. I am in the infusion room at the Norris Cotton Cancer center. The nurses are a buzz because I am on my final chemo with good looking reports. Happy ladies, happy Lina.  Arthur spent the better part of the day with me here and we had a good time, all things considered.

Was it rude to tell the nurses that I hope I never see them again, unless we are at the grocery store, craft fair, nudie show?! I think not.  Okay folks, I won’t be in celebration mode until 2 things happen.

1. I get unhooked and feel good

2. we go through the CAT scan and everything is confirmed as clear!

So get ready, soon soon.

I will write more on the weekend after I am unhooked and have broken that ribbon on the finish line! Here I go wooohoooo!

Like dandelion fluff I seem to go whichever way the wind is blowing.

September 14, 2009

For those of you who don’t know yet, my brain scan came back just fine. However, I spent an exhausting 36 hours waiting for the results.  Nothing like a little freak out to jumpstart your heart and mind in mostly unproductive ways. I did however find a Zen place while doing dishes last night that went something like: (to self)  “I hate doing dishes…. This stinks. Well, at least I am alive to be doing the dishes my family has made all sticky and yucky. I guess actually doing dishes isn’t so bad. I’d rather be here doing dishes than not here.” And VOILA now I can appreciate doing the dishes and cleaning the house and well, still not so much making salads, but I enjoy eating them!

Now I can focus back on my experience that almost got swept away in the terror of potentially having brain cancer too.  On the spur o the moment I decided to go for 3 days 2 nights to the Kripalu center in Stockbridge, Mass, to participate in an Ancient Tibetan Buddhist Healing Chöd.  The basis of it was we lie down and meditate or sleep while two Buddhist nuns and three Monks and the Rinpoche recite beautiful songlike chants that are supposed to heal what is ailing you, mentally, physically and spiritually.

My first night there I actually cried tears of frustration during the 2 hour session because I could not get my head to be quite. So many images, ideas thoughts memories were fighting for their place in the forefront of my mind. Argh.

The next day I ate breakfast, read a bit and then went to the 2nd session. This one was better. I cleared my mind and got totally into the experience. On our break I went on a long walk through the paths and into the woods to the ruins of the old estate on the grounds. During my walk I was consumed with thoughts about how trying this last 9 months have been and this idea of life equaling slowly dieing. And yes, kind of feeling self-pity. Which all spiritual and earthly beings know is both boring and ineffectual. But being in this state of self-consumption I am not exactly thinking on my feet and therefore ended quite literally not on my feet.

Live every day as if it were your last and then some day you’ll be right. ~H.H. “Breaker” Morant

I was planning on venturing from the upper part of the ruins down to the lower; I stepped off onto a downward slanting smooth rock, which turned my treadless Jamaican “get through Liver surgery trainers” into ice skates. I whizzed down and tried to catch myself on a tree my hand missed, my head just barely missed it and I fell face down into a tight little crevice; as if I were the meat inside a taco; knocking the wind from my lungs, my arms pinned beneath me, a nice sharp rock on the right side of my head and a giant woodland animal shit to the left, mere inches from my face. It took me a while to regain my breath and then lie there and figure out if I was indeed broken and how to get my arms out. Eventually I did get up and out and walked down the paths touching my body and muttering out loud to myself, “am I fine?  I am fine. Am I fine?  I am fine. Am I fine?  I am fine.”  And I was, save a horrible bruise on my left hip and generally sore body parts.

Okay, so it doesn’t take a genius to read into this. Our lives can end in a second. Anytime anywhere. Enjoy yourself.  It’s later than you think.

Later that same day, after the 3rd chanting session I went to the labyrinth.  Which for those of you who don’t know is a kind of mediation maze. You can’t really get lost physically, but it does wind and wind about. On my way in, again, I was thinking about my past 9 months, but in a different way. I was thinking about my road, and how compared to other people I have met and heard about going through cancer I have had a pretty easy time of it. And then thinking that every ones hurdles are their hurdles and the height varies from person to person. I may be able to jump a hurdle that others may not. My experience of pain is so different than yours, or hers or his. Sometimes I have felt almost ashamed walking into the infusion rooms at the cancer center, because I look healthy, I have my hair, my weight is fine, my symptoms and side effects, though there, are not what some people experience. I feel like a fraud. And yet this experience is so real and I wouldn’t want anyone else to go through it.

Once in the center of the maze, which I reached at about the same time as three other women, there was a Buddha sculpture and the other women lay symbols and trinkets at his feet. I didn’t come prepared to leave any thing; I didn’t know he’d be there. I thought about a trip to the Galapagos my family took when I was 16 and how the guide kept saying, take only pictures and leave only footprints. I kind of felt at a loss and tears sprung up into my eyes and then thought. I have nothing to give you but my tears. So I wiped some from my eyes and touched his belly.  As I walked the path out of the labyrinth the tears just started flowing like mad. My thoughts were of this 9 month journey, of how I, and many of you, have talked about “new life” “rebirth” my new liver and new self.  Is it a coincident that this battle with cancer has taken just as long as the gestation of a baby? Am I reading too much into it, or do I embrace this idea of rebirth?  If so, then I thought, I must have patience with myself, like we do with our children. I am hypothetically learning to crawl, walk, talk and look at the world a new. To take every day as an adventure and to look at the brilliance and newness and curiosities of the world like a child new to the world be the greatest gift, don’t you think? We are all so consumed with our lives, the dishes, the bank accounts, jobs and whether we look/seem like we are cool enough and fit into the society we exist in.

We’re fools whether we dance or not, so we might as well dance. ~Japanese Proverb

Wow, I know this is a tremendously long entry. But man, my head is spinning with all of these varied experiences.

Again and forever I will say and remind you, every one of you, your efforts, your love, your words, your support is invaluable, amazing, fantastic. And although I have my last and final Chemo infusion scheduled for the 24th of September I will say right now and forever that:  Because of all of you, I believe am the luckiest girl, that doesn’t have cancer anymore, in the whole world!

Don’t be fooled by the calendar.

lina lion

There are only as many days in the year as you make use of. ~Charles Richards

Oi Vay

September 10, 2009

So Folks…. “Oi Vay” is pretty much where I am at… also “what the heck” and “oh brother”.

Today was supposed to be my last chemo. I had returned Wednesday night into the warm embraces of my husband and three doodle bugs, after a couple days at an Ancient Tibetan Buddhist healing Chod retreat. It was fabulous and so many interesting things happened there, which is what I had intended on writing about while I received my final infusion of the “cleano”.

However, my blood tests came back with a low platelet count so they were going to hold it off for a week. But then I was explaining some of the symptoms of my side effects like; word retrieval, memory problems, headaches, blah blah. Text book chemo side effects. Jeez, there have been articles in the NY Times about “Chemo Brain”. What I expected and wanted to hear was along the lines of “Oh yeah, those are all normal and should go away in a few weeks or so.” Okay, so Dr. Pipas did say that..super, then added, “But I want to get you in today or tomorrow for a brain scan. Generally, colon cancer doesn’t travel to the brain, but we should get a reading to be safe.”

WTF? No seriously. WTF? This was NOT the plan, the script didn’t say anything about this. SO you see, “Oi Vay”.  Well, I can say that now 12 hours later after having a good old fashioned cry festival.

So peeps, I am certainly not in the clear yet, and I know no amount of praying or cheering will make any different in the next 22 hours to the results of the scan (tomorrow, Friday at 6:15 p.m.) BUT I do need your love, and thoughts and belief in my strength to get through this final push. It will be fine. Right? RIGHT!

No pictures today, no quotes, I wasn’t ready for this, well except from Bill (Bio-Pop)… “When you least expect it, expect it”… I’ll write about my other experience with the Rinpoche and his band of merry monks and nuns later.

Oh Heck, Oh Jesus, Oh brother and Oi vay, i love you all so much….

The Forest through the Trees

August 30, 2009

“One problem with gazing too frequently into the past is that we may turn around to find the future has run out on us.” ~M.Cibenko

It’s Sunday. One day post unhook from the 11th cleano sack, phew, and I am already looking through the trees toward the finish line.  September 10th is my final cleano and then sometime after that I get my tests to see how things have gone. Well, actually to show that it is gone. Really, really gone. Right? Right!

Sadly, the day I got the 11th hook up was also the day my Bio-Pop, Bill, and the sweet canine-nanny dog, Bonnie, packed the car and headed back to Colorado. Bill, for those of you who don’t know has been living with us for the last 6+ months, working on our house renovations. It has been a tremendously generous sacrifice from him as well as my Step mom, Leslie and my halflings Emma and Mattie.

More valuable than the house being renovated was the time that Bill and I got to spend together and having the kids getting to really know and love him. It is the longest I have lived with him since I was about 9 or so. And although I would surely have not chosen cancer to put us under the same roof again, it has been one of the very best things that has happened from this.  Now if we can just get airfares down or high speed trains up and running.

This weekend I have been resting up at my folks, Anne and Arthur’s, in Sharon with my first born baby girl, who cooked me a delightful dinner straight from the garden..yummers, beets, greens sauteed in apple cider (her own successful concoction), and a nice helping of buttery mashed potatoes. Doesn’t get too much better than that…. except it does, because the weather has been decidedly chilly and Georgia was also running back and forth stoking the fireplace to keep her Mama warm. What a kid, huh?

Today the cold weather sort of broke into a gentle humidity and the sun is shining through some spectacular clouds. The last of the summer rolling through perhaps bringing on the Autumn. Bringing on the next phase. Dear Mother Nature, what is my next phase? What do I do with this experience? Any bright ideas out there?  Can I become the poster girl for Colon Cancer without making cancer my life? And how do I do that?

I feel like I have a stick and there is this big Pinata hanging over my head and I don’t know if it’s filed with goo, crap, cancer, candy, money, love, fullfillment, answers…?   I am afraid to hit it for the fear of what might fall out all over me…and somewhere along the road I suspect I actually packed the Pinata.

lina sky

“The best things in life are nearest: Breath in your nostrils, light in your eyes, flowers at your feet, duties at your hand, the path of right just before you. Then do not grasp at the stars, but do life’s plain, common work as it comes, certain that daily duties and daily bread are the sweetest things in life.” ~R.L. Stevenson

Always a lesson…

August 17, 2009

Photo 252I am now lingering on the farther side of “cleano” number ten, though not quite done and I loathe to go into any detail about how my belly is feeling so I won’t.

When I posted the last blog, was feeling sort of, well quite sorry for my self. Not that I am going to retract the feeling of lonely I had previously described. No, that is real and a hurdle to be conquered. But right after I put the post up I got my “cleano” partner. His name is Bill. It was his first chemo. He Just turned 50 on June 11th and found out he has inoperable biliary cancer on July 17th.  Stunned, scared and walking that fine line between needing information and not wanting to hear too much. I feel like I did what I could to emote positivity, reality and humor. I hope I see Bill before I am done and see how he is fairing. What a stunner to turn a milestone birthday, thinking you are pretty much fine and then “pow” a big slap of mortality.

But it certainly ended up feeling like a sort of a slap in my face, by my own hand. I look fine. Generally I feel fine. I haven’t lost my hair, my weight has maintained, I get through my chemos fairly well compared o co many people. And here is Bill. bloated from fluid he has to have drained weekly, his skin and eyes completely yellow with jaundice, and loosing weight rapidly. Here he is just starting his journey, mine started 9 months ago and my prospects though somewhat dicely, stage 4 cancer often is, were and now are a lot better than so many of the people I have heard about and come across. I pray that Bill has the stamina, the genes and the response to the intense chemo he is about to experience in order to get through this.


“Experience is a hard teacher because she gives the test first, the lesson afterwards”- Vernon Sanders Law

Number 10 of Twelve

August 13, 2009

Yes, it’s true. I have been avoiding you (my blog). I have been trying to figure out why exactly. I got through all my surgeries swimmingly, my scar has healed into a beautiful flat centipede, I am getting used to my lack of gallbladder, and have put back on all the weight I have lost over the last 7 months (which my Doctor thinks is just great, and I  think “meh”).

The thing is, these last bunch of “cleanos” are really difficult. Not just the side effects; nausea, finger sensitivity, nerve tingles, acne rash, the “chemo brain”; The hardest part is turning out to be the mental hurdle of getting through this last bit. I feel fine, I feel in my heart the cancer is gone. To have to haul my self to the infusions, knowing I am going to feel so cruddy, knowing that in some ways I am also poisoning myself, is probably the hardest part of the challenge since first hearing the diagnosis.

I am in my head so much, trying to psyche myself up, trying to believe that once it is over it is truly over, trying to keep my chin up, trying to understand what sort of stresses may have contributed to this disease and how to not venture down that path again, trying to keep my wits about me as my brain seems to get foggier and foggier. Word recollection and names are getting more and more difficult to access and that is weird and worrisome as some people never get over the side effects.

I feel like I am at the end of the marathon and I don’t know how many people I have passed or been passed by. All I know is I am still running, the end is almost within sight, and that I feel incredibly lonely. Not because of any lack of love and attention from all my lovely people, but because, I believe, it is the nature of the race.

The wonderful nurse who sets up the home portion of my “cleano”, Barbara, is a breast cancer survivor. She and I were talking today about this mental hurdle. It’s normal. Not easy, but normal. We guess it builds character, though we both think we had an adequate amount of character to begin with and that getting much more character is just kind of greedy. Hah.

Anyhoo darlings, my last “cleano” is September 10th. At some point there will have to be some serious celebrating. Any ideas out there?

10of 12
“Life is not easy for any of us. But what of that? We must have perseverance and above all confidence in ourselves. We must believe that we are gifted for something and that this thing must be attained.-Marie Curie