Kate on Friday morning, 30 January 2009

Kate says, "I mainly want you all to know that I care about you all and love you." Please read Kate's blog entry today, and comment. Thanks.

Back by popular demand - so "Hello"!!

Hi folks,

I'm getting some help to be in touch with you, because it's hard for me to use the computer right now. Sitting up that long, thinking, all of these things are difficult for me right now. But here we are. I'm having a good day.

A "good day" consists of being a little more comfortable because they're getting the pain meds under control, and a "good day" consists of not being nauseated, and a "good day" means getting up a little bit, getting up in bed, moving around a bit... so I'm not just laying around here being disoriented, like I was for a while.

I went through a period of time where I was very disoriented. People would tell me they have visited, and I had done such and such, said such and such... and during that time I was ridiculously out of it.

So that has changed, and I'm able to carry on a more or less coherent conversation... not necessarily a deep one, but relatively coherent.

I have really appreciated the friends who have visited. They bring me interesting things and if nothing else it becomes a topic of conversation. I may or may not watch or read something someone brings. Everything goes by in short, brief moments, and paragraphs... paragraphs of conversations... paragraphs of activity....

And if I get too much stimulation -- even wonderful stimulation, such as visiting with people I love -- I get tired.

So it's something that I think is hard for people to understand. My thoughts are very interruptable. I sometimes just drift.

My family has been here a lot lately. They're not in the house at the moment, but at this time period, yesterday and today, several of my siblings have been here. I have three sisters, and two have been here to visit (a sister from Colorado, and a sister from California), and my brother from Seattle.

My sister from California was featured on a blog entry fairly recently when she came and stayed with me for a while, Gwenda.

And my sister Raedene from Colorado, some of you have heard about, since she has been really good in terms of actual medical support because of her healing work. But now, there's a switchover. Raedene is not giving medical support, she's giving loving sisterly supportive help.

There's a tremendous lot of love among us siblings, I'm so fortunate.

I have two sons here right now... Arlo lives here of course. I'm living with Arlo. And his brother Day from California is here with us, too. It's possible Day will be actually moving to Eugene for a while, so then I'll have him here a lot. He'll be able to relieve Arlo when Arlo goes to work.

Arlo has a full time job and so he needs to be able to get back to work whenever possible, just for his own continuity. His workplace is being very cooperative, we're very happy about that. But for his own work continuity he wants to be there a considerable amount.

So it's good there's another brother of his here -- son to me -- Day.

Just a week ago another son, my son from Virginia, Rock, who I lived with for a while, where my bus is right now -- came here to visit. My son Rock brought two of my lovely granddaughters, Zoe and Nike.

So Rock, who is a United Pilot, flies the big ones...

Rock also likes to fly little-little planes. He brought videos of practically a stunt plane, practically a toy, he's bigger than the airplane, he can barely get in the cockpit. He's one of the very few pilots who can fly a plane like that. So he has a YouTube presence in terms of flying that little mini-plane.

Rock showed that and all kinds of other exciting YouTube and video stuff, including things he has not done, like "wing suit" flying. So if you're interested in tiny little things that can barely cover your body that can fly you around, that's the entertainment that Rock brought. That was quite fun.

It's addicting watching those things.

I need to wrap up here. Let's see, how do I do that.

Friends and family and hospice workers have come in with interesting things. I can play with clay, I can play with watercolor, I have not expressed myself artistically that way much in my life but I'm doing a little of that now.

So that's how things are just being here...

...just being here...

I think that's it.

Love, Kate

P.S. This is David Oaks typing what Kate said this morning, hopefully accurately. You are encouraged to post replies to this blog, and Kate's friends and relatives will try to read those to Kate, if she has any trouble getting on the web herself. To reply to this or other blog entries, I believe you have to 'log in' first, and it's very easy to pick a user-name and memorable password.

Kate mainly wants you all to know that she cares about you all and loves you.

Winter, Eugene. Missing Sunshine. Socorro Where Are You.

It Snowed last night in Eugene, Oregon. Eventful!

Here I go again, hesitating to report because I don't seem to have enough glowing wonderful hopeful things to report.
It is interesting though. Pain remains the primary impetus for choosing steps along my healing path. A friend was speaking recently of our human problem of pain relief seeking. I've worked with persons addicted to pain killers. I commented to my friend that as far as the temptation that pain killers might offer, I have little perspective because I have no experience in pain relief. Only pain. Its a true drag on my psychic and emotional energies and certainly physical energies. I'm looking into everything.
Last week I had a surgical procedure for pain relief--the celiac plexus block. I had misunderstood and expected immediate pain relief after the procedure--done under conscious sedation, with long needles that spread a nerve disolving solution at the site of the problem. Now, I've read that the procedure doesn't provide immediate relief and that the effectiveness and length of pain relief generally increases with repeated injections.
I called the pain specialist's office this morning and asked about scheduling a second procedure. I have to wait until a seven day recovery interview can be done and then on the basis of that schedule a repeat procedure if it is considered appropriate by the doctor.
Here is the link for information about the celiac plexus block.

Meanwhile. I've become interested in Medical Marijuana. Oregon has a Compassion Center that will help with doing all the necessary steps to register as a patient whose doctor has recommended smoking pot--cannabis--to relieve serious medical symptoms including severe pain, and the nausea that accompanies pain treatment and chemotherapy. My general practitioner, my doctor of nearly 30 years, has made that recommendation to me and I'm exploring it. I'm not interested in growing any "my own." I hope to find somone who will agree to be my "designated grow site". The site, my doctor, and myself, have to be registered and recorded on the registration card that I will receive as a registered user.

I've heard of problems in California with police and growers clashing. I've been told that these problems are not happening in Oregon and that when there has been a legal question it has been settled in favor of the registered medical marjuana user.

Besides these explorations, I have consulted a naturopathic doctor, ND, who specializes in 'oncology'--the medicine of treating cancer. She has me on an anti-cancer program. The recommended diet includes some fermented food--so far all I've managed is Miso; a powdered drink supplement called Nanogreens, and another containing Aribogalactins; my trusted systemic enzymes--Wobenzym; N-acetyl L carnitine to relieve th neuropathy in my hands and feet; Melatonin--in larger amount that would be used for sleep aid, because the substance itself may be an anticancer agent.

I'm also using a self hypnosis CD from the Ontario Hypnosis Center called "Healing the Body Through Mind and Spirit", and another CD by Belleruth Naparstek that uses imagery and affirmations. I haven't listened to the Nancy Hopps pain CD for a while. I will. I tend to switch from one favorite tape to another.

Some of my friends are managing to keep in touch, while others have been finding it difficult with the flu season upon us. I can't be exposed to anyone who might have an infectious sneeze or cough, so it limits us. And also I am in so much pain that I cannot get myself out of the house. I haven't even been for a walk. I am doing some exercises, though, remembered from when I had an injured knee. I do these on the living room floor and hope they are keeping me from increasing debility.

You may be able to tell that I am not feeling very hopeful. I think that if I were not in pain, and that if eating did not hurt me that I could have a more positive attitude.

Just yesterday I decided to let go of the idea of traveling to the Morgenthaler Christmas in Petaluma, California. It was a good decision. It's opening it up for me to get to have time with both Day and Arlo and their families here in Eugene. I'm delighted at that and looking forward to Arlo's and Marina's, and Rebekah's, cooking. If we can somehow include Wendy and Rock in the Holiday events it will be quite perfect. I know both of them will be engaged with their own families--kids and spouses. Anyway, I'm glad I decided to stay home.

Lets all ring down the holiday with wishes for me to be free of pain, and able to enjoy my wonderful family.

Purple Iris

Be kinder than necessary
Because everyone you meet is fighting
Some kind of battle.

The KIVA

Remember back in the 70's when the Kiva was a big warehouse down on 11th, next to a dance hall, and other good stuff. The whole foods grocery if I visualize it right was in the back right hand corner. There were books, and wines, and things--kitchen things, homesteader things, bulk foods. There was an earth shoe shop in a little loft near the front door accessed by a ladder and not tall enough to stand upright in. Remember? And down along one side there were booths and tables and folks hung out there. We ran into friends. I was living down by Cottage Grove then, and would come in with my partner Wayne, and friends from our little "back to the land" farm we called Tanager. I was the only person in our friend group to have a baby one of those years--Day, born in 1974-- in our little home made house on Blue Mountain School Road made from the recycled boards of the old Cottage Grove Hardware Store. There was a bunch of us living there then, maybe a dozen. It was eventful and full of love, work, gardening, goats, and other forms of angst. When Day was born, being the baby of a big household he was a pretty popular item. Everyone wanted to hold him, a phrase was born--"Let me hold 'im", which came out "...hold eem" and then became a nick name for a while. I remember being in the Kiva one day after Day started toddling and he was loose running around. Across the room I heard a happy shout. "It's Eem! It's the Eem beam!" Our friend Michael Forster, Magic Michael had spotted his little darling.

One day not long ago, I saw a young mom with a little kid, blond hair long enough to blow in the wind, wearing a little jean jacket with the sleeves rolled up to let out his baby hands. They were stopped on a street corner she bent over him. I felt liked I'd looked in a mirror to the past. It made me cry for those old days of hope and friendship, before the fall. When a new baby was the hope of the world, our world, the one we were envisioning and building.

I guess what was lost, for a while, is how ongoing that task is. How it doesn't just happen by our hard work and then we get to live in it. It happens, and unhappens, and morphs, and changes, and succeeds, and fails, and births new fears,and new dreams. Some of us are still here, or here again, or left the planet for a while and will maybe be back.

Today, I called the Kiva with a special request, and guess what! Its still here, its still real, its still the heart of the downtown community, and the Kiva came through--the people came through. Because that's always all that can come through. The people. The love.

My friend Sherril Bower who is a clerk there shopped for my groceries for me--cuz I'm house bound--and my son Arlo, born a couple of years after "Eem", stopped by the store which is just blocks from his workplace, to bring me my groceries.

May the circle be unbroken. I'm just spilling over with good feeling right now.

Love to you all.

Body Size as Blessing

artist: Noora K, age 16, Finland

This morning in the tub I thought, hey, after all those years of having a large body, I finally have one that can be completely submerged in a tub full of water. No belly and boobs emerging into the air. Pretty cool. I don't recommend the weight loss method, but it is enjoyable to have a body that can completely soak in warm water without my going to the hot tubs.

What that submerged body looks like is quite another matter, unique in my well fed, always trying to lose weight life. My body is now a deeply wrinkled and creased bag of skin.

Seriously we are so screwed up about what constitutes a healthy body, so certain that thinness is preferable. I remember reading that a woman entering older age is somewhat better off carrying a little extra weight. I see now how having a bit of bod can start one out on an illness or other stress with a resource to help you get through it.

Definitely we are not talking about obesity. After years of nursing and care giving, I am very aware how difficult it is for the patient and the nurses to keep an over sized body comfortable and healthy. Everything--toileting, skin care, mobility, everything--is more difficult and may require special equipment to avoid injury to the patient and the care giver. I strongly recommend maintaining a healthy weight.

However, I am seeing the other side of this picture. During this illness and during the devastating side effects of chemotherapy my body has wasted. I now don't have an ounce of unneeded fat, but I also do not have enough muscle mass. Muscle, when it is adequate will allow me to move, walk, sit, stand, and do tasks without the pain that comes from muscle strain.

I made choices, which included miscalculations, about how to deal with it when I first realized that the chemotherapy, by contributing to demineralization of my bones, had caused compression fractures in my spine. I was in pain at the time, not only from that, in fact possibly not from that at all, but I set about immobilizing my back--resting in correct positions keeping my back straight, resting more, staying off my feet. I did do a few exercises to try to keep the muscles functional. The exercises I did were seriously not enough. I was ill and did not do them regularly. I could have, but I did not. I went often for much of every day into a drifting mindless state, and during a week I might remember to do bed exercises twice for a few minutes. Hardly adequate.

Suffering from the weakness eventually defined itself, and I recognized that I have a very big task in front of me. It got so that shuffling across the house to go to the bathroom was enough to make my back ache. Muscles I wouldn't think of were affected. My handwriting became shaky, my bladder weakened.

The good thing is this is something I can do something about. Affirming that I am healing from my disease, then the task of building my body back becomes very near the top of the list for daily activities. Working carefully I'm getting to where I can do a little "workout" and then rest. I can take a walk.

I've seldom been a disciplined person. I'm still not. This is not discipline, it is motivation, it is hope, it is intent. It's something to do, too. You may be able to imagine how boring it is to be sick. To have just about zero energy for activities, and on top of that to be plagued by the notorious "chemo brain" so that even mental activity becomes null and void.

So in my sudden maturity, suddenly having a body that shows its age after a lifetime of seeming younger than I am, there is this brand new thing. I've become a body builder.

What Has Happened

I'm back at Arlo and Marina's Eugene house. Marina has her first big, real, teaching job after graduating U of O. Its in a nice charter school in Newport, lovely Newport, on the coast. Arlo spends as much time over there as he can. Aren't they lovely!

What happened, in August, is that I got sick so bad and so fast that a moment never felt like the one I could take to talk to you all. Only those I specifically called for help knew what was going on.

It was pain. I have a great deal of respect for pain, long have had from a nursing point of view, and now its personal having experienced some of the effects of constant unrelenting pain, not only unrelenting but increasing on a daily almost hourly basis. Pain management advises getting on top of it and staying there, because playing catch up once you're out of control is a battle won only after major scrimmages.

Knowing why one is in pain helps determine the approach. One might expect a cancer patient to immediately expect and explore new tumor growth. Instead I immediately said well it probably is not that because I'm doing all these good things and have high positive expectations.

I was invested in being well and continuing to do the things that I have wanted to do. I'd written to friends and professional contacts with the information I'd be coming back to New Mexico--in September or October. I was leaving open for myself the idea that I'd return to a retreat setting for further healing. I corresponded with the New Mexico Women's Retreat--a wonderful place where women teach, learn, and share, healing and building homes, among other planet loving activities in one of the most beautiful places on earth.

Unfortunately, pain and other indications of ill health led me to believe that I had some other problems that, frustratingly, I would have to deal with here and now while I am in easy contact with my long time physician, Dr. Cordes, and with others in the medical community, as well as with many of my wonderful friends, sisters and brothers and guides along the path.

Subsequently my various theories surfaced, were considered, treatment instated, and after a hopeful day or two, the repeated result: this is not working. We considered a gastric ulcer, post shingles neuralgia, liver disease, compressed discs, pain from a long time post surgical umbilical hernia. I saw a pain specialist, Martin Kloss, who agreed to advise me and my doctor though he didn't officially see me--I'm on medicare only. He was very very kind and good and suggested the compression fractures which were subsequently found on a new xray the next day.

I was on various medications specific to those possibilities, doing back exercises--passive, positional-- and wear a back brace when I could stand it.

One weekend it all came to a head. I went to stay with Tricia and Paul who said, "You go to bed and do nothing, we'll do everything. OK?" On the following Monday, I kept an appointment made weeks before to explore the possibility of repairing the umbilical hernia. I arrived at that baffled doctor's office vomiting in his waste basket and clawing the paper of the exam table. Dr. Dickinson walked in took a look and said, "...and What are we here for???" Clearly not his patients' usual presentation!

The good physician however did exactly what had to be done. He called my oncologist, who was out of town, but arranged with the Willamette Valley Cancer Center to do a new CT Scan that very afternoon. The contrast material didn't work out well for viewing inside the stomach because I was retching, but the photos were sharp and revealing: New lesions scattered down behind my sternum, one sitting on the adrenal gland, others across the waist, and one big old grapefruit hunkered in tight behind and between my liver and my stomach.

Dr. Cordes gave me the word, held my hand, waited for it to sink in, discussed the options, got me on real pain medication, got me an appointment the same day with the on call oncologist, Dr. Caton, at the Cancer Center, and sent me on my way with a healing hug.

These tumors had grown very very fast. Barely a month earlier a scan had indicated a tiny possible something-or-other that we had decided to "watch" and a further scan had been scheduled but was not yet due when all this happened. Its terrifying to see something like that in my body. But I did see it, clearly, on the films in Dr. Caton's office. And had "seen" it during a recent middle of the night melt down with my sister. Gwenda, holding me while I cried, asked me what the pain in my abdomen looked like. I said, "...it's...a...cantelope".

The short of it, and hopefully not the long of it, is that the large tumor on the liver was in a position to stop my life fairly promptly and of a very unpleasant shut down liver and subsequent necrotic liver disease. I chose not to opt for that, and the option available, the only thing known to be fast enough, is chemotherapy.

I've had the first of my second round of chemo now which consisted of weekly sessions, once a week for three weeks. I have a "break" this next week to allow my bone marrow to recover, and other damage to recover. Then I go back for another three weeks of sessions. After that the cancer doctors will do a new Scan to see how much we've been able to destroy.

Chemotherapy we know, does not only target cancer cells, the way it does identify the cells to destroy is to destroy the fastest growing cells, so that a cancer, generally growing faster than the rate it takes to maintain a healthy body organ, is targeted in a scattershot kind of way that also destroys other fast growing cells that we constantly need for renewal--nerves, heart, skin, various repair jobs, bone marrow, bone. We walk a narrow line--using a damaging toxic substance and betting on the body's system renewal mechanisms to repair the collateral damage.

That is the important bet: That my body can celebrate the removal of dead damaged material, repair and replace necessary healthy tissues, and return to its natural state of vibrant health. This is my strongly held belief.

Morgen, Day, Rose, and Rebekah

Cancer is a formidable foe. My son, Day, who is visiting me here right now, met a man on the train coming up through the Cascades. The man is living with and soldiering against cancer--he called cancer a "magnificent" enemy. Not sure of that term, but bein' as the man may be a soldier, a warrier, then probably approprieate for him. What bopped me on the head this time around was the mere fact that "my" cancer did not turn tail and run with the very first clobber with a big stick. I really thought it had. I'd turned happily to my alternative therapies and though I'm less disciplined than I ought to be I believed I was succeeding.

I'll tell you more about the alternatives I am using in another post.

Having this setback, and serious enough that I chose another go round with chemotherapy brought out in me deeply conflicted feelings. I've been sad, mostly. Disappointed. I've also felt I've been naive, and that I really did not "get" the seiousness of this disease and its lessons for me. Those lessons are beginning to come and they are good, and I still feel some unnecessary shame for being so difficult to teach. But mostly even that shame is nothing beside the depth of insight that is occurring in me.

When I am well, when I look back on this phase of illness and treatment, shining through it will be a thread of bright illumination, happiness and gratitude for the deep deep gifts that are beginning to transform my life.

What an adventure.