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.
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.
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!
“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
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.
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.
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.
Wednesday, March 10, 2010 7:24 PM, PST
My horoscope today — You may feel as if you’ve exhausted your magic, but nothing is further from the truth. You are at a crucial turning point today as Mars turns direct in your 6th House of Work. Your dreams continue to be bigger than life, yet day-by-day they will seem to inch away from the night and out into the light of day. Keep the faith; you are closer to success than you realize.
Reno is insane. Slot machines at the airport gates, more smokers than I’ve ever seen in my life (some wheeling oxygen tanks; I’m not kidding), huge casino-cities with their own banks, bowling alleys, and Starbucks inside. It’s the twilight zone. I would never have come here if not for the cancer treatment.
The day started with the slowest taxi driver on the face of the earth. He read over the directions I gave him to the clinic about seven times, mumbling to himself. My mom and I were super-anxious and rolling our eyes at each other. When we got to the complex of medical buildings, he wouldn’t listen to us pointing out which one to go to, and instead spent 10 minutes driving around in the cul de sacs of the parking lot. I was ready to grab the wheel and push him out, but my mother restrained me.
At the clinic we waited a long time. Many very sick patients in the waiting room. Most seem to have had chemo prior to coming here, as they had no hair. The receptionist made copies of my reams of medical records and gave me back the originals. They were playing Vivaldi’s “Four Seasons” VERY loudly, and one of the sickest looking patients finally shouted out; “Does anyone else think this is too loud?” We are agreed and then another guy got volunteered to tell the receptionist, who obligingly turned down the music. That seemed to break the ice. There was a couple from Boston, a guy from New Jersey… people from all over. Several “veterans” of the Forsythe treatment assured us newbies that we were in good hands.
The wait dragged on and on. I thought of my friend Adrienne who has a self-imposed limit of 20 minutes waiting in doctors offices, then she leaves, no matter what. I knew I couldn’t do that, having flown in from Portland and Mom flying in from Cleveland, but I was sorely tempted to run.
A mother and daughter pair came in. Mother pale and thin, daughter vibrant and healthy looking with great curly hair. Mom and I placed bets on who was the patient. It was the daughter. Breast cancer, of course. We got to talking and I admired her pluck. She was coming here after just her first set of biopsies and diagnosis. They wanted her to have a mastectomy and she would have none of it. Right on. I wish I had known more two years ago at the start of my journey. Every biopsy and surgery I’ve had just served to spread the cancer around, and now I’m at Stage IV. Colleen and her mom were surprised when I told them that. “You look so healthy”, they said. Yup. I know. She was from West Virginia, 37, had $150,000 in college loans, and was borrowing the $20,00 for this treatment from her family. Her mom (who is originally from County Wicklow, Ireland, and speaks with a lovely lilt) flew in from Colorado to join her. <
She talked about how wanting to sue her doctors for putting titanium clips inside her breast. I didn’t tell her how many I’ve had… and all the horrible, painful, radioactive injections – one in the nipple in NY – and cancer-causing MRIs, CT scans, and dozens of mammograms. If I hadn’t already had cancer, these things would surely have given it to me. It’s barbaric.
Sometimes I can’t believe this is really happening, like I will wake up and just be better. I mean, seriously, how could I have CANCER?
When I finally met Dr. Forsythe he was no-nonsense, clipped as a Colonel (which he used to be, actually), and very knowledgeable. He examined my records and my breast, said he’d seen worse and he thought that I would do well with the treatment. I was actually more worried about my mom seeing the ugly red tumors clustered along the incision line than the doctor. I had avoided showing it to her at Christmas because I didn’t want to upset her, and now they were so much worse… I asked a few of my questions and got direct decisive answers: No to the oopherectomy/hysterectomy. Yes to the Lupron shot. Yes on Arimidex. Yes to the Zometa. Don’t worry yet about getting the mercury fillings removed, you can take a break from the Zometa later to do that. Double your Vitamin D to 10,000/day. Yes take the DIM for the cervical dysplasia. Possibly do Xeloda after the chemosensitivity test comes back from Germany, but it has to be done on a Monday or Tuesday, not today. Curcumin spray for the breast pain. No chemo. No radiation.
My mom and I were just catching our breath and gathering the rest of our questions when he abruptly left the room to order the supplements and tests he wanted. We thought he was coming back, but apparently he had gone to lunch! A nurse came in and took a hair sample to test for toxins. I was surprised at how big a hank she took and cut right to the scalp. Jeez. Now I have a bald spot on the back on my head. Oh well. I’ve always wanted to have this test done anyway, to test for toxicities, so – cool.
I then had blood drawn, and a long frustrating phone conversation with my Oregon medicaid about covering the blood tests. Turns out they won’t cover me for anything except life-threatening emergencies when travelling out of state. Um… I have Stage IV (termimal) breast cancer, is that life-threatening enough for ya? Apparently not. That’s when I cried for the first time all day. OK. They will send a fax to my Portland oncologist, who hopefully will do the blood testing for me. And I’m already holding an appointment for tomorrow to get the Lupron shot that will shut down my ovaries, so maybe I can get it all done at once. What fun. Then drive 2 hours home to Astoria.
The payment process was a little creepy. They don’t accept out of state checks! We worked it out. $500 for the consult, and $267 for the supplements and hair testing. My mom is amazingly generous to me… what would I do without her? I’d be doing chemo and radiation that would kill me, that’s what. I really want this treatment to work. It would be awful to spend all this money and then die of this stupid disease anyway. It occurs to me that this treatment costs exactly the same as the year of grad school that I just postponed in order to deal with my cancer. And I could get an unsecured Perkins loan for that, so how come they don’t have loans and grants for essential medical treatment? I make an appointment to return and begin the IV treatment April 19th.
OK, back in the cab. The reality that now I need to raise $20,000 – $40,000 by April 19th in order to DO what will probably save my life starts to become real to me. I am overwhelmed. We go to Whole Foods, eat chicken soup and vegetables (OK, and some bread, half a cookie, and some macaroni and cheese – all of which I’m not supposed to have – no wheat), and then get the cab driver to drive us around the neighborhood a little and try to suss out where I might stay for three weeks. This is a GREAT cab driver. He’s from NY, of course. Brentwood. And he drives fast and knows where he’s going. Yay.
Back at the hotel, I really collapse. I think the stress and the energy it takes for my body to keep fighting this tumor are cumulative. I rest awhile, till it gets dark, and then we go downstairs for dinner. There’s a live band playing awful 70s song in the casino – inescapable. Faux-Mexican food. Blech. Then I play a slot machine, just to say I did. I chose one with a Native-American wolf theme, in honor of Mark and of a dream I had a few days ago that I was zipping myself into a wolfskin preparing for battle. I lose seven dollars really fast. Time for bed. Alarm set for 5:30 am to catch my flight.