Goodbye My Friend

October 12th, 2011

My friend Krista died yesterday of Stage IV Breast Cancer metastasis.  (Yesterday was also Mark’s and my first wedding anniversary.)  Like me, Krista was 50 years old.  We met during treatment for our shared diagnosis last year at the clinic in Reno.  She inspired me.  She was vibrant and beautiful and sexy, and funny.  We sat there with IVs in our arms in side-by-side recliners, surrounded by the sick and dying people, who we were not.  We loved them… but they had come for naturopathic treatment too late, and their days were numbered.  We were different.  We would survive.  We compared notes and shared strategies and knew we would make it.

One day Krista, always the multi-tasker, had an on-site windshield repair service come and work on her car in the parking lot of the clinic.  She told the receptionist to send the guy back to her for the keys when he arrived.  When he sauntered in, cute as a button, she gave him her keys and a spectacular smile.  He seemed confused, but happy about it.  When he left, she turned to me and asked; “Do you think it’s weird to flirt with an cancer IV in your arm?”  I assured her it wasn’t.

I had just started my first GiveForward fundraiser when I got there, and Krista was full of questions about that.  She tracked the progress of donations to my site on her smartphone, and gave me blow-by-blow updates from the recliner.  I was feeling ill from the treatment and she was cheering each time a donation showed up on the site.  I had started the fundraiser as a last ditch effort to get treatment and felt embarrassed to be begging in public, but Krista saw it differently.  She thought it was brilliant and brave and she wanted all the details.  Shortly after we returned home, she started her own wildly successful fundraiser, which she credited all to my inspiration.  She focused hers, in addition to funds for treatment and expenses, on donations of airline miles and vacation rentals so that she could spend precious time creating memories of family time for her two teenaged children.

Last year she went to Mexico, Europe, and Hawaii with her kids, all on donated miles and lodging.  She also met the love of her life and traveled to Spain with him… but in the Spring of this year, she was having more and more pain and confided in me that something was happening, something really bad, inside her body.  Still, on April 3rd in an email she wrote: “I am loving my life right now – and I see myself well and strong and helping others.”  When she returned from Spain, she was rushed to hospital with tumors blocking her intestines.  She called and told me that things were serious, with cancer in every major organ, and time was running short.

I flew down to CA in July to see her for the last time.  She was preparing.  She had asked her ex-husband to move into her condo so that her kids would not have to move and change schools when she died.  She was in the process of giving away all her belongings.  She had just moved in to her new love’s cottage, but was wistful about the circumstances… as she said, they weren’t really starting something, but both knew that she was coming there to die.

I wish I could remember clearly all the brilliant things she told me about myself that weekend, but I can’t right now.  I’m too stunned and saddened that such a force of nature could ever be quelled.  Of course, she’s not been extinguished, just transformed… but I can’t reach her on the phone anymore, so we are going to have to find another way to communicate.  She’s been my cheerleader and sister-in-arms for the past year and half, the only one who really “got” what I was going through, because she was going through the same, and I was humbled by her practical and present approach to her own death.

But tonight I’m just trying to grasp a picture of Krista in my mind, feel the warmth of her smile, her energy… I watched a video that someone made at the clinic (video here: http://youtu.be/UiuAmla3EE8); Krista is the blonde in the grey sweatpants and black hoodie.  The speaker is Marilyn, in a star-spangled sweater, who Krista started calling “Mom” that week.  Stew is in the corner, doing poorly, and to her he was “Dad” – spouting wisdom and Shakespeare and telling us all that love is all you need.  Krista told me that she and I were the “kids”, sisters.  It’s so painful to watch now, all that hope and enthusiasm… not that it is ever wasted, but just poignant.  Our “Mom” and “Dad” from the clinic were dead within the month, and most of the patients in the video within the year.  And now Krista.  So that leaves me.  The only one left alive from our hopeful little group.  And I am wondering about how cancer chooses whom to take, and when.

For the past five months my own cancer markers have been steadily rising, up to 40 points over normal.  And I’ve been in constant pain from the small cancer lesions that are in my spine now.  Krista knew this, and warned me to live my life as strongly as I could, because this, she said, could be the beginning of the downward spiral.  She scared the shit out of me, and woke me up to my life every time we talked.  Today I awoke to the news of her death.  Today too, I got the results of my latest blood work – my markers are suddenly DOWN by 20 points.  The cancer is backing off for now, perhaps, giving me time to live a little more.  Thanks to Krista, I have a good idea of how to do that.  SO, I’m launching a new GiveForward fundraiser today to get the treatments I need to keep going (link above right).

I just found a parting gift from Krista.  Last Fall, she sent me a recording of her talking to one of our favorite doctors in Reno, Dr. Maged.  I hadn’t listened to them before, but now just hearing her voice is precious.  If you would like to listen, here it is: https://public.me.com/lightpoler  (It was recorded in two parts, so there is some overlap.)

Goodbye my friend.  We shall meet in the sweet by and by.

Krista at the clinic August 2010 - Third try for a good vein - yikes!

One Year Later

It’s just about a year since I returned from my first trip to Reno for treatment.  My cancer markers have remained in the “low normal” range for all this time, so things are looking really good.  Thank you to everyone who contributed time and energy , love and money, towards making my treatment and recovery possible.

To see some of the wonderful donor comments from this past year of fundraising, please check out these links (and click on “Donors” tab) :

http://www.giveforward.com/megpattersonfund

http://www.giveforward.com/Meg-Patterson-Breast-Cancer-Fund

http://www.giveforward.com/megpatterson

[I had to keep varying the name of the fundraiser to keep my site up on GiveForward.  I will be revising the site soon and opening it again to accept new online donations.  In the meantime, donation checks can always be sent to: Meg Patterson Cancer Fund, c/o Clatsop Community Bank, 988 Commercial Street, Astoria, OR 97103]

There were also wonderfully inspiring notes and cards and emails that came and helped give me courage throughout the year.  Thank you all so much.

In October 2010, Mark and I finally got married!  There are wedding pictures at www.megpatterson.org

And this Spring, I began graduate school!  I am studying for my MA in Humanities at Pacifica Graduate Institute in Santa Barbara.  It’s a hybrid online/residential program, so I work mostly online and go down to Pacifica once each semester.  The photo is me on my first day of school in 30 years, with my new friend Debbie (photo by another new friend, Rachel Ford).

I’m moving slowly into what cancer survivors call “the new normal” stage of the journey, although the doctors never use the word “remission” with Stage IV cancer.  All I know is that my markers are normal, I feel fine mostly, and I am working hard to rebuild my life.  Cancer will always be a hum in the background though, and I will always be “in treatment” in terms of diet, supplements, and naturopathic protocols, which are costly and time-consuming.  The gift of survival comes with the knowledge that things will never be quite the same.

Home from Reno

.

I am SO happy to be home from Reno.  Even though it’s where I need to be for treatment, the dry air and heat in Reno just don’t agree with me.  Also, SO many people smoke there!  Now I am back to the fresh air of the Pacific Northwest and all my healthy habits.  I can walk by the river and go to the Farmers Market today.

OK, so there WAS one very good thing about Reno – MY VESPA SCOOTER!  I got my housing this time for free by placing a listing on HomeExchange.com, and it turned out that a very nice hairdresser in Reno with an apartment in the historic older part of town near the river wanted to do a non-simultaneous exchange.  So I stayed in her apartment while she stayed with friends across the hall, and I had the use of her scooter while I was there!  It was a real challenge, riding in the heat and smog, but I’ve loved Vespas ever since I rented one in Italy years ago, and took to it again pretty easily.  There was one day when I felt too depleted from the treatment to scoot, and that day my friend Krista (we met last time, and arranged to go back for the same week this time), picked me up in her air-conditioned Volvo – bless her.

So, my markers are down, my blood work looks good, the doctors were VERY pleased with my progress, and revised my protocol somewhat.  I think I will take about 10 fewer pills a day (still taking over 50 pills a day, plus some nasty tasting – and expensive – liquid Poly-MVA).  And I will start alternating IV Chelation therapy with my weekly IV Vitamin C routine.  The results of a hair analysis showed that I have high levels of Cadmium, Tin, and Lead in my body and I need to get rid of that to keep the cancer in check.  Unfortunately, I also still have parasites, possibly from a trip to Peru 20 years ago, so I will be taking Artemesia and a homeopathic Parasite tincture for that.  Whew!

And the wedding plans are still in progress.  Yesterday on the way home from Portland airport, I went to an AMAZING fabric store there called Mill Ends, and got some exquisite ivory English netting and lace to make my wedding veil.  I spent about three hours in sensory heaven there, looking at all kinds of fabric I don’t need, and dreaming up projects in a way that I haven’t done in many years.  Such fun!

Thank you to everyone who has been donating to make my treatments possible.  I am starting a new fundraiser on GiveForward.org that will be up and running later this week, as I still owe the clinic about $7,000 for last week, and I have to get about $1500 of treatments and medicines each month now.  Medicaid thankfully covers the Zometa, Zoladex, Femara, and even some Acupuncture! but there are still co-pays and necessary treatments that they do not cover.  It really doesn’t make sense to me, since what I’m doing is working and is cheaper by far than traditional chemo… but that’s how it is, so I must raise the money for myself.

So, in my mind anyway, I am scooting on!  [I'm wondering how one can add a pair of matching Vespas to a wedding registry.... ]

Driving AWAY from the clinic!!!

Cautiously Ecstatic

The good news is that my cancer markers have gone down for the second month in a row.  Dr. Forsythe called me from Reno when he got the report to congratulate me!  So I guess the wedding plans are on for October!  It feels reckless to be planning a forever thing when just recently I was thinking it was the end of the line…

So to celebrate, my wonderful friend and neighbor Carrie took some photos of Mark and me and (a reluctant) Tasha, all dressed up, yesterday down at the train station.  Thanks Carrie!

Feeling Separation (a Rumi poem)

 

Don’t let your throat tighten

with fear. Take sips of breath
all day and night, before death
closes your mouth.

Pale sunlight, pale the wall

Love moves away.
The light changes.

I need more grace
than I thought.

- Rumi

Home again

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Sorry for the long silence.  Great news from my doctors back home (after the Reno treatment).  The cancer spread on the breast surface appears to have improved by 90%! – that’s a quote from my dubious oncologist.  AND my cancer markers are down by ten points.  YAY!

To those of you who so generously donated to my Cancer Treatment Fund, THANK YOU!  I want you to know that I was aware every second of the time that I was in Reno, that it was only through the gifts of others that I could be there at all.  Being able to pay for my treatment without having to worry about bouncing a check (!) was the greatest gift of my life.  There is NO way I could have done this without you all.  I am humbled, and inspired to try to help others too.  I’ve already started hatching a plan for some kind of foundation that does this… when I am through with my own treatments, and stronger, of course.

The end of the treatment was very chaotic because the day we were to drive back to Oregon, Mark had a seizure.  He lost some memory (temporarily) and I had quite a time trying to explain to him what we were doing in Reno, NV!  So, we stayed a few extra days, and I carefully transported him home.  He’s doing much better now…  One of the doctors from the clinic, Babs Clough, even made a housecall that night to check on him.

Dr. Forsythe’s clinic in Reno was amazing, not only because of the practitioners and the holistic nature of the treatment, but because the other patients were so interesting and inspiring.  I am going to write a separate post about the protocol specifics for those who are interested.  But the days were exhausting with IV treatments and lots of doctor appointments with tons of new information each day.  I had a couple of “Herksheimer Reactions” where I was very sick, but the doctors were (sadistically, it seemed) thrilled to see that and encouraged me to keep going.  And I did.  It was about the 5th day of treatment when I realized that my tumors were visibly shrinking, and that was motivation enough to keep going.  I didn’t have any trouble with my veins until the last day, when they “blew out” twice trying to find a good one.  I was really glad, because sometimes people need to have a “port” installed, and I did not want to go through that…

Now that I’m back home, it’s a little harder.  I still have to keep up a routine of diet and dozens of supplements, plus a weekly Vitamin C IV treatment (for which I have to drive 2 hrs each way to Portland), and try to get back to normal life.  It’s harder without the support of the clinic staff, the enthusiasm of the doctors there, and the peer support from fellow patients.  Also, Mark had to go back to NY, so I am on my own again.  I have kept in touch with a few other patients by email, and that is helpful.

There’s also the constant worry about the cost of continuing this treatment, but I know I MUST find a way, because now I have proof that it’s working.  [I do have "before and after" pictures, but I don't want to post them on the public website.  If you know me and want to see them, please ask and I will email them to you.]

Thanks again everyone, and please do check out the new fundraisers on the tab above.  There are a couple of friends donating their vacation rentals that will help raise the funds for me to go back to Reno for a tune-up in August.  One is in Salt Lake City, near world-class ski resorts; and the other is in St. Croix — http://www.facebook.com/event.php?eid=125229407490736

Blessings to all!

Shot through with beauty and love

“The world is not respectable; it is mortal, tormented, confused, deluded forever; but it is shot through with beauty, with love, with glints of courage and laughter; and in these, the spirit blooms timidly, and struggles to the light amid the thorns.” - George Santayana

Shot through with beauty and love.

My friend Nan sent me this quote, along with her donation this week.  And it’s the perfect way to describe what is happening right now.  Yes, I still have breast cancer. Yes, I still need the treatment.  Yes, I’m still in pain, and the worry is even worse than the pain… But putting myself out there for all the world to see has brought me so many blessings this week that I cannot even count them.  Over 65 people have donated to my medical expenses fund, for a grand total of $9031, which is nearly one third of the total I need for the treatment in April at the Cancer Hope Center in Reno.

I never imagined that there would be this much support, but I knew I had to try.  What’s been equally amazing is the notes of support and tributes that I have been getting.  Every time I open my computer, there are more missiles of love and hope than I can absorb.  It’s truly wonderful.  I’m taking some of them and starting a new section of my website called “Tributes & Inspiration” so you all can share them too.  What an ego boost!

The other thing that’s happening is that friends from all over are starting their own fundraising efforts and coming up with other creative ways to help:

- Bari, in Rhode Island, is raffling off a weekend at her 1760 home in Newport, among other goodies: http://web.me.com/bari205/Site/Raffles_for_Meg.html

- David in California, a brilliant photographer, is raffling off an original signed print: http://elizabethavedon.blogspot.com/2010/03/david-maisel-lake-project-38-fundraiser.html

- Candice, who runs a cleaning service here in Astoria, Oregon is organizing a car wash with local high school students!

Other friends have sent gift certificates to Whole Foods, a juicer, and are shaking the bushes for free housing in Reno.

Wow.  As my friend Anni wrote (with a nod to Shakespeare):”Your army is recruiting – signal fires are being lit across the land!  The flames leap from mountaintop to mountaintop, sending out the call for aid.  We’ve got your back, grrrrrrrrrrrl.”

So, I am galvanized.  Thank you ALL for your love and support.

More news to come… keep your dial tuned here.

p.s. I almost forgot to say.  The GiveForward website founder contacted me to let me know that my fundraiser is now one of the “featured fundraisers” on the site! Whoo hoo“The world is not respectable; it is mortal, tormented, confused, deluded forever; but it is shot through with beauty, with love, with glints of courage and laughter; and in these, the spirit blooms timidly, and struggles to the light amid the thorns.” - George Santayana

Magellan’s Journey

Tuesday, March 16, 2010 11:02 PM, PDT

A chronicler of Magellan’s voyage to circle the globe, observed:”During those storms the holy body, that is, to say St. Elmo, appeared to us many times in light…on an exceedingly dark night on the maintop where he stayed for about two hours or more for our consolation.”

Well, I turned on the TV, which I almost never do, to take my mind off the cancer and fundraising… and watched a PBS show about Magellan’s journey and the modern day replica of his ship which retraced his path and circumnavigated the globe.  I couldn’t escape my brain though, which started hearing his travails and triumphs as symbolic of my own journey.

I learned some things I didn’t know, like the meaning of “St. Elmo’s fire” (named after St. Erasmus, the patron saint of sailors).  Apparently it’s a natural phenomena when electricity builds up near the end of a lightning storm and what appear to be glowing balls of fire hover near the top of tall things at sea – like masts of ships.  Magellan’s men, during a ferocious storm, were looking for divine intervention, and there it was; torches burning in the sky.  The storm then ended.  They took it as a sign to keep going.

So what are my signs to keep going?  The description of the hard months at sea without even knowing if they were going in the right direction really got to me.  How do we know if we are going in the right direction?  We don’t.  We just keep going.

When Magellan reached South America, the first thing he did was sail into a 500 mile inlet.  By then, his whole crew knew he didn’t know where he was going really.  So how do you keep your faith, your strength, your hope, when you sail a long ways into a dead end?  When everyone else thinks you are wrong?  There was a mutiny attempt and he had to execute one of his captains to prove he was the boss.  They continued the journey, eventually found the passage through to the Philippines, and then Magellan got cocky (my interpretation) and tried to go to battle with a local chief who wouldn’t be baptised for Spain.  They killed him.

So, I’m thinking, why couldn’t he have just been nice, enjoyed the scenery, filled up on food, and sailed on to the Spice Islands? His ship and what was left of the crew DID sail on and complete his journey, proving definitively that the earth is round.

But why do I like, and identify with, these impossible stories?  My journey is not nearly as courageous as those sailors.  I am not doing something that one in eight American women don’t do – being treated for breast cancer.  But somehow it has shaken me to my core.  I don’t know what the outcome will be.  I’ve sailed into several dead ends, having seen the cancer recur twice now…  Maybe it’s the hope that, against all the odds, I will be one of the lucky ones.  I will get my life back.

I hope, if I do, that I can live up to that.

AND NOW THEY WANT TO TAKE AWAY OUR SUPPLEMENTS!

Sunday, March 14, 2010 8:53 PM, PDT

I’m using my journal space today to rage about this proposed legislation. There are many proven cancer fighting supplements I take (like fish oil, curcumin, vitamin D, milk thistle…) that would be taken off the market if this goes through.  It’s outrageous.

Please make your voice heard by your representatives.  This is REALLY important for all current and future cancer patients.

Dark, Tangled 3am Thoughts

Monday, March 15, 2010 3:39 AM, PDT

Exposed Roots at Youngs River Waterfall

One of the lovely side effects of the drugs I am taking is that I’ve been slammed into premature menopause, complete with hot flashes, mood swings, and insomnia.  Also, all my muscles and joints ache from head to toe, with the neck, shoulders and arms being the worst.  And I lie here awake with my right breast throbbing in pain from the new tumors… When Mark is here, I can sometimes breath with his sleeping rhythm and get myself back to sleep.  But he’s not here.  He’s in NY taking care of his parents.

If you’d rather not hear me whine, then stop reading now.

Last Thursday, I had a shot that will shut down my ovaries.  My cancer is estrogen-positive, so this was the next step to take after the Tamoxifen failed to stop the growth.  For the next level of drugs, I can’t be pre-menopausal, so it was either the shot or surgical removal of my ovaries.  I’m trying the shot (Zoladex) first.  At 49, I already had a less than 2% chance of ever getting pregnant, but somehow it’s different to actually choose to do something that ends your fertility.  No children. Never now.  That’s landing very hard.  And even if I live through this and want to adopt, Mark and I would almost certainly be turned down – he with epilepsy, and me with cancer.

I think about where I want to be buried.  I used to think I wanted to be cremated, but now that death is a closer possibility, that really feels too harsh.  I can’t be buried with my brother at Arlington.  So is it here? My new home?  Or back in Mendocino, where I lived for 11 years and my first dog, Kima, is buried? Both of those would be hard for my mom.  So East Coast then? By my grandmother in Rosendale? That holds no meaning for Mark… but his family is buried in those awful New York City graveyards under the freeways. I want to be buried on a hill overlooking the ocean, someplace I love, someplace peaceful.  I think now of the old cemetery in Jamestown, Rhode Island where I did gravestone rubbings with Bari when we were still in college.  I was fascinated by the old stones there from the 16 and 1700s.  Yes. Maybe that’s the solution.  I wonder how to arrange for that?

OK, I’m not dying.  Stop it! I have a treatment plan.  I’m on the way to recovering.  Keep repeating to self: Spontaneous Remission, Spontaneous Remission, Spontaneous Remission.  NED – no evidence of disease.  I want to be NED.  My white blood cells are attacking and disabling the cancer throughout my body.  The cancer cells are being flushed away naturally by my incredibly strong immune system…

I’m angry that I had 28 lymph nodes removed from under my arm during my first breast surgery.  I didn’t know any better, and I thought I was just having a sentinal node biopsy.  The surgeon kept going because cancer was found in two lymph nodes.  He took 28, only finding one more, for a total of 3 positive nodes.  Now I know that removing ANY lymph nodes, even cancerous ones, does not improve your chances of survival at all.  In most cases it’s better to leave them in place, doing their job.  But I didn’t know that then.  There’s so much I didn’t know.

So now my right arm is forever damaged.  The way the doctor explained it, my right arm is now “diabetic”.  Prone to lymphedema (extreme swelling and pain), weakness, possibility of infection from even minor scratches.  I need to wear a compression sleeve to fly on an airplane. And because my right arm was debilitated, I overused my left arm.  Last September I was was walking a friend’s big dog on a leash and he pulled my left arm backwards, almost dislocating the shoulder.  The torn muscles and tendons still haven’t healed.  So both arms hurt most of the time.  It doesn’t sound like a lot, but try making the bed and pulling the fitted sheet down over the corners, or taking a shirt off over your head, or braiding your hair, or putting on a coat.  These motions can cause me excruciating pain.  Housecleaning, dishwashing, gardening, carrying groceries… all are dilemmas to be figured out.

Wondering if this disease can be reversed.  Can my breast heal? Will the bone mets in my hip and pelvis go away?  The next step is a Zometa shot for that.  I’m preparing for it.  I have to have any needed dental work done beforehand because there is a risk of jaw necrosis.  Yup, JAW NECROSIS.  Your jawbone dying off and disintegrating.  Nice.

I really think my best hope is Dr. Forsythe’s treatment in Reno. I must figure out how to make that happen.  Lots to do tomorrow.

I pray.  I take a half a Xanax for the anxiety.  I play my Belleruth Naparstek guided imagery for Fighting Cancer.  I pray some more.