Wednesday, May 27, 2009

The Deed Is Done

Posted Nov 3, 2008 3:48pm

You know how you just can’t resist rubbing a guy’s head right after he gets his first buzz cut? It feels even better to be the rub-ee. Imagine how much fun it is to have your own fuzzy head and able to rub it any time you want! I look a little like a grandpa with a buzz cut, since my hair has thinned quite a bit, but it feels amazingly good. The shower feels awesome on my head, and after a shampoo and a drop of conditioner it’s very soft.

Yesterday Kanako called to assure me she would be over by 4:30 for the Big Cut. Kat had planned on visiting late afternoon, so I called to let her know that this was The Day in case it would freak her out. Heck no, we were going to make this a celebration (unfortunately without the wine).

My sister (a retired hair stylist) called from Mountain View to wish me luck, with her regrets that she did not live closer so she could be the one to do this. I still feel everything happened in the right sequence with my cutting it a little at a time over the week, but I can’t describe how good it felt to have it so tenderly shaved. It wasn’t like those military movies where they just attack your head and shave it to the skin. Kanako has given this gift to many of her clients, and she does it with such care. She started by trimming around my ears, and then actually worked in layers, combing and shaving a small section at a time. I wasn’t watching the clock, but it felt like it took at as much time as a real haircut.

We didn’t have a mirror in the kitchen, but I could see a mottled reflection of the top of my head in the shiny tiles on the backsplash of the stove. Kat took a few pics, they both complimented the shape of my head – and reminded me of the importance of always wearing lipstick and big earrings! When she was done, Kanako rubbed my head in quick motions to free any loose clippings – it felt so good I started tapping my foot on the floor like a happy puppy getting a belly tickle!!

I went to the bathroom to check out my new ‘do in a 360 degree view, and it was not the shock I had anticipated. In fact, it was not a shock at all. It’s a different look for me, but it is what it is. I’m comfortable going bare-headed at home, and wear a turban cap if I’m cold. For the time being, I just put on some big lime green earrings and touched up my lipstick!

We gathered up what hair clippings we could for the collection that I’ve been saving in a paper bag for the birds, and I vacuumed the rest. Finally, I can put the vacuum cleaner away – I’ve been dragging it around all week to clean up the ongoing hair trail. Shortly after Kanako left, another friend popped in with a gorgeous potted plant of enormous burnt-orange mums! She had read the carepages and knew about the event of the day; as a cancer survivor herself, wanted to offer her support. I asked her to rub my fuzzy head for good luck, since she has, as she said, “Been there, done that, got the T-shirt.” I just love this new sensation of head-rubbing!

When we first moved into the house, every time Dave went for a bike ride I’d paint a room, so he was never quite sure what he was coming home to find. Now that I’ve run out of rooms to paint, I had to do something to surprise him; why not shave my head? I know there’s an art project waiting to happen around this; there was just too much going on yesterday to get started. Everyone had left by the time he came home from his ride yesterday, and I was wearing a soft terry turban-hat when he arrived, since my head had been a little chilly. I was kind enough not to greet him at the door with a bareheaded “BOO!” When he had called earlier, I told him that Kanako had been visiting – he knew what that meant. As I pulled off the hat, he started to give me a sympathetic pout until I had him rub my head – for good luck – and we got a good laugh out of it.

Although this eliminates the get-ready time for doing my hair, the turban-wrapping can be quite involved. Here are some tips for wrapping scarves – cotton works best, and the long pashmina style shawls are my personal favorite. They don’t slip, and the length allows some pretty fancy twisting and wrapping.

If you don’t wear a head covering underneath the scarf, your head can look pretty flat. I like wearing a plain, fitted turban (either cotton or terry) for that. These are also very comfortable to wear alone to keep my head warm.

When it comes to earring, size matters! The bigger and more colorful, the better. There are some great finds for these and the scarves at Cost Plus (World Market), Ross, Marshall’s, TJ Maxx and Target.

So there you have it – a story, a picture and plenty of chemo beauty tips! Round 2 is this Thursday, and since chemo treatments have cumulative effects, I don’t want to even imagine what mysteries await. What I have learned is that no matter how bad it gets, there is always a solution, and it usually involves getting creative to find new resources and make the best of it. Like those who have gone before me and made my journey less terrifying, I offer what I find to those that follow me. Every person who has walked this path has an amazing story to tell, and I am honored and humbled to be among them.

I have been blessed with a warped sense of humor that focuses on the lighter side of what could be a terrifying experience. That is my means of coping, and simply an offering of a different perspective. My humor is never meant to minimize the impact that cancer with all its collateral effects can have on not only the patients, but everyone in their lives. The best thing anyone can do when you find out someone has cancer is to just be there for them in whatever way you can, and whatever way they need – listen, laugh, cry, send a card or email just to let them know you are thinking of them, drive them to an appointment, make some soup – big or small, every contact means so much. I love carepages; it has been my best outlet for expression through all this. Just knowing that you care enough to be following this story is absolutely the best thing you could do for me. Thank you, thank you. Have a wonderful, cozy autumn week!
Love, Laurie

The Un-'Do!

Posted Nov 2, 2008 1:23pm

OK, today is the day. As Dave rolled over toward my pillow to kiss me good morning, I tried to warn him, but it was too late – he rolled right into a fluff of hair I had shed through the night when my protective cap slipped off. We both said, “EEEEuuuuuuwwww!!!” and he made a lot of “pffffth…” noises trying to blow the strands off his lips. It was gross. I knew if I didn’t do something about this soon, we’d both be coughing up hairballs. With this nice muddy weather, he was off for a dirtbike ride after breakfast, and I went in for what I thought would be the final cut. After trimming what was left to about 2”, it still kept falling and clinging to everything like spiderwebs. Enough already.

So many women have told me they just reached a point where they wanted to shave it all off, and I wondered what that feeling would be like. Now I know. It’s like a breakup – the fear of the unknown is so strong that you justify staying even though you know it's not right. Then one day you are so done you just want out, even if it means leaving everything behind. Cutting my hair in stages over the past few days has given me a certain sense of control, not over my hair loss, but in my choice in how much I was ready to participate in the process. At this stage, I’m OK with shaving it. I took out my electric shaver and started at the front of my head, but it’s not really designed for this heavy duty task, and it was leaving odd zig-zag trails. Good grief. I look like a gang member. I gave up on that project and left a message for my hairstylist friend that offered to do this a few months ago. I hope this is not the week she is out of town.

In the meantime, I have errands to run, so today is my red scarf day. I had gone grocery shopping yesterday, and while everyone else was dealing with umbrellas and hoods, I had my green scarf to keep me dry. When I was checking out, a woman waved to me from the next register and said, “I love your scarf!” I could be starting a new trend in Folsom! Here’s the up side – I can blow dry my fuzz in 30 seconds instead of 10 minutes. I don’t need color, conditioner, mousse or hairspray, and I save at least another 10 minutes because the hot rollers just won’t fit.



There’s a break in the weather, and while the sun is shining I’m going to hit the road. Enjoy your Sunday!
Love, Laurie

I Am Not My Hair

Posted Nov 1, 2008 6:30pm

A salesman is lost in a rural area and stops at a farm to get directions. As he is talking to the farmer he notices a pig with a wooden leg. "How did the pig get a wooden leg?" he asks the farmer.

"Well", says the farmer, "that is a very special pig. One night not too long ago we had a fire start in the barn. That pig set up a squealing that woke everyone, and by the time we got there he had herded all the other animals out of the barn and saved every one of them."

"And that was when he hurt his leg?" asked the salesman.

"Oh no" says the farmer. "He was fine after that. Though a while later I was in the woods out back and a bear attacked me. Well, sir, that pig was near by and he came running and set on that bear and chased him off. Saved me for sure."

"So the bear injured his leg then," says the salesman.

"Oh no. He came away without a scratch from that. Though a few days later my tractor turned over in a ditch and I was knocked unconscious. Well, that pig dove into the ditch and pulled me out before I drowned."

"So he hurt his leg then?" asks the salesman.

"Oh no," says the farmer.

"So how did he get the wooden leg?" the salesman asks.

"Well", the farmer tells him, "When you have a pig like that, you don't want to eat him all at once."

And when you are as attached to your hair as I am, you don’t want to cut it all at once. Monday morning I was looking out my bathroom window and noticed a few leaves had fallen from my fig tree. Uh oh… I had my normal energy back, so I put in a full day at work, stayed late to finish up the billing, did some grocery shopping, and came home with energy to spare. After dinner, I was lounging on the couch talking to Dave, and ran my fingers through my hair. I felt a little “snap” like when you pull a hair, but there was no physical sensation, except the tickle of a couple of hairs between my fingers. Uh oh…

Tuesday I washed it gently, and noticed there was more hair on the bathroom floor than usual after blowdrying it. That was the last day of my hair as I have known it. I wore it up in a clip for safekeeping, but when I tugged on a few stray hairs that had dangled to the back of my neck from the clip, I was able to discard most of those. There was no doubt that the process had begun. That night I showed Dave my new trick and he felt worse than I did. At that point I became more fascinated by the process than upset. I had been telling him that my roots were showing, and if my hair was going to stay much longer I'd better color it. Guess that problem is solved!!

So I decided I might as well make this fun. I tied back my hair, Dave took a picture, and I sent it to a whole bunch of friends with a request to help me decorate my head! (If you didn’t receive one and would like to play, just email me!)

I don't know if I got all my anxiety out of the way worrying about it earlier, or if it hasn't hit me yet, but right now it doesn't bother me & I'm curious to see what the process is going to be like. If nothing else, it is incredibly messy. I’ve tried wearing those little hair-catching caps to bed, but they pull off as soon as I turn over, and there is hair everywhere. One of my friends described it as “falling like autumn leaves,” and that is certainly an accurate metaphor. I either had to cut it or drag out a blower and a rake.

So Thursday morning I cut off about 6”. I tied the locks with a ribbon and saved them with the first yellow fig leaf to fall from my tree, and a beautiful red and yellow leaf from my maple. I look like the old photo on my website, so it wasn’t much of a shock. From this point on, we’re going for the ‘do of the day! On Friday I took advantage of Halloween & the rain and wrapped my head with my long, fringe-y burnt orange scarf. The explanation I use with the patients that don't know about this situation is that my hair is out of control in damp weather & I would rather wear a scarf, and they just love it :>)

Several times last night I woke with flying hair tickling my face, crawling down my back when I got up to go to the bathroom, leaving a trail on the tile. So this morning I cut it even shorter, and I had to laugh at the lack of control I had over it. Every time I would pull a section to cut, long strands would just loosen & fall, so I was never sure if what I cut was attached or not. Or if it would attached much longer. What a mess! Where’s a Flowbee when you need one? I swept everything into a paper bag, in the spring I’ll scatter it in my garden for the birds to use in their nests. It’s like the opposite of scattering my own ashes, a way to celebrate my life and share it with the other living critters that share the property.

Before taking a shower, I wanted to treat myself to the Miracle Whip facial that Lori-with-the-gorgeous-skin has been telling me about. I am not making this up. Her dermatologist was amazed that her skin has absolutely no sun damage, despite the same ritual of baby oil and iodine sun worship we all succumbed to in the ’60’s. You spread a thin layer of Miracle Whip on clean skin, wait a couple of minutes, and then rub gently. Off comes the old, dead skin! My skin is absolutely glowing. The only drawback is that I smell like a sandwich. But that’s not necessarily a bad thing. I may not repeat the process tomorrow, when my hair is really short. Looking like a glowing Chia pet that smells like a deli delight could just be the thing that sends me over the edge.

Tomorrow (if there’s anything left) we’re going for the spikey ‘do, but who knows? Stay tuned.

Here’s an exerpt from wonderful song by India.arie:

I Am Not My Hair

Little girl with the press and curl
Age eight I got a Jheri curl
Thirteen I got a relaxer
I was a source of so much laughter
At fifteen when it all broke off
Eighteen and went all natural
February two thousand and two
I went and did
What I had to do
Because it was time to change my life
To become the women that I am inside
Ninety-seven dreadlock all gone
I looked in the mirror
For the first time and saw that HEY....

I am not my hair
I am not this skin
I am not your expectations no no
I am not my hair
I am not this skin
I am a soul that lives within

Does the way I wear my hair make me a better person?
Does the way I wear my hair make me a better friend?
Does the way I wear my hair determine my integrity?
I am expressing my creativity..

Breast Cancer and Chemotherapy
Took away her crown and glory
She promised God if she was to survive
She would enjoy everyday of her life ooh
On national television
Her diamond eyes are sparkling
Bald headed like a full moon shining
Singing out to the whole wide world like HEY...
india.arie “I am not my hair:

If I wanna shave it close
Or if I wanna rock locks
That don't take a bit away
From the soul that I got

The Chemo Adventure Continues

Posted Nov 1, 2008 5:10pm

The past two weeks have been almost surreal – my poor body, which hadn’t seen so much as an aspirin before all this started, is completely confused by this chemical bombardment.

So much for defending myself against chemo. A few hours after my previous chemo update, “Miffles” had dragged me to the couch and sat on me for the rest of the day. I was somewhat consoled with the thought that I wasn’t the only one laying around on a Sunday afternoon, watching TV and feeling flu-ish, but it was certainly out of character for me. I was back to a normal schedule on Monday, although my energy was up and down over the next few days. The worst of it was a mild nausea, not enough to feel like throwing up, but enough to make me feel miserable and not the least bit interested in eating. The medication alleviated the problem, but I found something even better. One of my patients told me her dad is going through chemo, and by using some pressure-point bracelets from Rite-Aid, he didn’t have any nausea. Sure enough, I tried the PsiBands, and I haven’t had to take the meds since. They have a button that presses on the anti-nausea pressure point on the insides of both wrists, and they really work!

On Wednesday I had the MUGA heart scan, and I’m delighted to report the injection was in the arm and not the heart (whew). My charming tech, Stefan, explained every step of the procedure which started with a blood draw. He then disappeared into a shielded room, where over the next 30 minutes, while I patiently re-read a 2004 Architectural Digest several times, he processed my blood to break down the outer cell walls, and replace it with a radioactive marker. He reemerged with my blood vial enclosed in a protective lead tube (that was reassuring) and injected it back into my arm.

We went next door to the imaging room, where he helped me get comfortably situated on a narrow padded table that would later slide into the scanning tube. I didn’t even have to change out of my regular clothes. He placed a pillow under my knees, had me slip my arms into a wide fabric tube so they wouldn’t dangle off the edges, and the table rolled into position. Unlike an MRI, this is an open tube, with film panels that rotated into different positions around my body. The film is sensitive to the radiation that was pumping through my bloodstream, and as they fill the heart chambers, the image produced by the gamma camera is essentially an outline of those chambers. With some fancy computer manipulation, the final product is a movie of the beating heart. About 20 minutes later, I was able to watch the final film of my “anatomically perfect heart.”

I didn't feel so hot on Thursday when I went for the don't-worry-there-are-no-side-effects herceptin infusion. No wonder – my blood draw showed that my white blood cell count (immunity) had dropped to 0.8 from 13.3 the past week. The normal range is 4.0 – 11.0, which means I started out with a stronger than average immune system, and the chemo knocked the living daylights out of me. They started me on injections right away to raise my white cells and told me to monitor my temperature. I snoozed through the 45 minute infusion, and hoped the nap would give me a little boost. By the time I returned to the office at 1:00, I felt pretty sick, had diarrhea and my temperature was over 102. I left the chemo nurses a message, cancelled all my appointments for the day and went home to go to bed. They called back late afternoon & told me to go check into the hospital. I decided that driving myself was probably not the best idea, so I called a girlfriend who lives nearby. God bless her, she interrupted her shopping spree to pick me up within 10 minutes - now THAT's a friend :>)

I called Dave before I left, pocketed my license, insurance card and keys, and off we went. I must have been delirious to not bring any personal items. Every trip to the hospital so far has involved only a few hours, so I wasn’t even thinking that I’d be there overnight. I checked into Sutter Roseville around 4:30, and when I first entered the lobby, I had to ask someone if I was actually in the hospital. It is a beautiful facility, with colorful landscaping and a rocky fountain in the lobby. The oncology ward is new, every room is private, and by my bed was an enormous window overlooking a wooded area. Dave was there within minutes of my getting settled, and luckily he had the foresight to suggest he run down to the gift shop to get me a toothbrush.

The staff was absolutely wonderful, although the first hookup to my port was… interesting. It gave me a profound appreciation for how adept my regular chemo nurses are at accessing it in an instant. You know how I dreaded the thought that the MUGA scan might be like the scene from Pulp Fiction? I may have been spared on that round, but we made up for it during the port episode. The nurse first lowered the bed to a fully reclined position, which was strange, since the port is always accessed with me sitting up.

I started to worry when after palpating around it curiously for a few moments, she muttered a “hmmmm….” I think a little bead of her forehead sweat hit my nose, but I was getting nervous and it could have been my imagination. At that point, someone opened the door to ask her a question, and through gritted teeth, she said, “NOT RIGHT NOW, I'M ACCESSING A PORT!” Oh boy. Please don’t piss her off. Just back out of the room slowly, and we’ll all be fine.

After a few uncomfortable and unsuccessful attempts, I suggested that maybe it’s just my type of port; we never have a problem if I’m sitting up – would she like to give that a try? (Please???) She gave a surprised “Hmph…,” and said they had been trained to have the patient prone for the process. I convinced her it might be fun and easy, and she agreed to sit me up. Fortunately it worked, although for the first hour or so I still worried if she may have missed entirely and the fluids were just splooshing uncontrollably into my chest. When all was said and done, I was again very grateful for the port. For the next 4 days I was on IV antibiotics and fluids, and frequent blood draws; I can’t imagine what a nuisance it would have been if I were trying to function with a needle in my arm.

Thursday had been one of those days I didn’t really need to wash my hair, and it looked perfectly fine up in a clip. Which means by Friday I knew it would be plastered to my head and I’d feel like I’d slept under a bridge. Once I realized I would probably be there at least until Friday night, I sent Dave home with a list of a few basic toiletries to retrieve for me when he came back after dinner. Very basic – he is just too sweet a man to be subjected to digging through drawers of potions. I didn’t even care about cosmetics; I just wanted to get clean. But I should have thought of a hair drier, since it was a little chilly trying to dry my hair with just towels. Oh well, hopefully I won’t have to do this again, but if so, I know how to prepare,

My mind felt so dull that I didn’t even feel like reading, and although daytime TV should be enough to bore anyone into a trance, it is very difficult to sleep in a hospital. By Friday night, my blood pressure had dropped to 77/44 (from my usual 125/70). Since that can be a sign of sepsis (systemic blood infection), they were considering calling in the Rapid Response Team to determine I should be in ICU. Fortunately, I wasn't having any signs of low BP - dizziness, slurred speech, etc. - so they checked it every 1/2 hour all night and it slowly started going up. Whether it went up because I was recovering or because I was getting agitated from being awoken so often, at least it was increasing.

Although it was the only time it happened, they were not able to draw blood from the port that night, so the nurse said she would send in a phlebotomist later. In the middle of the night, just as I was starting to rest, there was a knock on my door. It slowly squeaked open, and a short, bald, wiry guy with glasses poked his head in the door. “Miss Andreoni? They sent me here to see you…” Good God, now what? As he pushed the door open with his back, and dragged in his cart of tubes & vials and needles, I swore he was one of those sinister “doctors” that would have the means to make me talk… I’ve been watching too many Netflix episodes of Alias. I’d been pumped up with so many fluids that he had no problem painlessly accessing a vein in my hand, and actually told me I had the kind of veins that phlebotomists dream of. How sweet.

A neutropenic diet was my introduction to the dark side of oncology nutrition. If the cancer doesn't kill you, the hospital food and/or lack of sleep from being prodded every 1/2 hour will for sure. I was so excited when I saw a "Tossed salad" on the menu - ah, leafy greens at last! Imagine my dismay to learn that in hospital language, this means 1/2 cup of the whitest part of iceberg lettuce, a 3 inch shred of red cabbage and a cherry tomato. Most vegetables are canned (unless you choose the baked potato chips), and I never realized there was a way to cook brown rice to bring out the ultimate bitterness of the grain.

I had requested grapes for dessert, but since they can’t be peeled, they substituted a tiny sealed 2 ounce container of “strawberry” ice cream. It was the color of Pepto Bismol, and glowed threateningly in the dim light of the room. On Saturday I had Dave smuggle in some real food, although my choices were still limited because of my susceptibility to infection. No fresh fruit, except bananas, which could be easily peeled after a thorough washing. Everything else had to be factory sealed. So I settled for some Odwalla shakes, carrot juice and organic yogurts. YUM!!! Really, I felt so nourished!!!!

The upside of all this is that the staff was wonderful, and the room was as comfortable as a hospital can be. If I hadn't had to drag an IV contraption with me every time I went to the very nicely tiled huge bathroom where I had to pee in a measuring "hat," I may have felt like I was in a hotel.

Apparently the reason they could not give me the meds prophylactically to prevent the drop in my white count is because the shot is $3800 a pop, and until I show a need, the insurance company won't approve it. I'm going to guess a couple of shots of this stuff would probably have been less expensive than 4 days in a private room in the oncology ward, but what do I know about cost containment... :>) In all fairness, Laura (my oncology nurse) said most folks don’t react this strongly to the first treatment. The good news is that the chemo is working. The other news is that I am extremely sensitive to it. If I have a similar reaction on the second treatment next week, they will lower my doses for the next two treatments. I thought I was just supposed to grin and bear it. But the objective is to wipe out the cancer without my feeling so miserable in the process. They kept me on shots to raise the white blood cells, IV antibiotics and fluids, and the worst food on the planet until Sunday, when everything normalized.

Dave's mom had us over for a wonderful dinner on Sunday night, so I didn't have to cook. Even though I don't have my normal appetite, it was such a delight to eat real food!! You would think 4 days of starvation would be a great kick-off for diet, but with all the fluids, I actually gained five pounds. I was back at work full time & feeling my old normal self on Monday, and the extra weight dropped of over the week. But wait, the fun didn’t end there! To be continued…

Love, Laurie

Screw Chemo...

Posted Oct 19, 2008 2:44pm

This morning I woke to meet my new roommate smugly staring me in the face. Introducing “Miffles” – a sloppy acronym I created to name MIld Flu-Like Symptoms, the most minimal initial side effects of chemo. Achy joints, dull head, tired, nauseated. Ugh. She started quietly sneaking in yesterday, and was easily subdued by a light lunch and a couple of pieces of ginger. But by 9 a.m. she was determined to ruin my day. Fat chance. I bypassed the usual cup of coffee, and as water bubbled on the stove for lemon ginger tea, I dug through an unfamiliar pile of drugs that were prescribed for the situation.

So many choices! One med “increases transit time” (i.e. has a laxative effect) so food won’t stay around long enough to bother my stomach. Another is a strong anti-anxiety med, so I’ll conk out and not worry about feeling lousy. I decided on a straightforward anti-nausea med, and within moments I was able to look at toast like it was not the enemy. I am glad I spent some time shopping yesterday to stock up on organic veggies for juicing. As soon as my tummy settled, I concocted my beet-carrot-spinach-ginger brew – it sounds awful, but it has such an energizing kick!

I didn’t think my appetite would be impaired so quickly. It’s a good thing I made a big batch of vegetarian stuffed peppers in the slow cooker last night, because recipes are not my greatest inspiration today. Fortunately, I think these red peppers are going to be irresistible no matter what – stuffed with coconut-ginger quinoa, mango, cilantro, basil and lemon balm. Yum.

If I really were coming down with a flu, I would have spent the day lounging, but knowing that the chemo is trying to get me puts me on the defensive and I want to keep moving. It is a glorious fall day, the perfect temperature with brilliant blue skies and fluffy white clouds. I went for an hour walk around the neighborhood, with a few new detours that time usually doesn’t allow when I’m on a tighter schedule. The Chinese Pistachio trees are turning bright crimson, their tips speckled with dusty turquoise berries. Decorative grasses have gone to seed, and sway to their delicate dance in the soft breezes. The neighbors’ friendly competition with Halloween decorations never fail to make me laugh, and every year there is an expanded population of hanging goblins and creepy creatures. Achy hips notwithstanding, the walk certainly made me feel better, and I’m up to a day of puttering.

Enjoy the sunshine! Love, Laurie

Friday, May 22, 2009

Trust a Professional!!

Posted Oct 18, 2008 1:56pm


Check out the slide show and enjoy the first batch of photos Kat just delivered from our vacation. The really awesome floral shots are the spectacular work of K. Walker Photography, and let me throw in a blatant plug. You should see what she creates with kids and families!!

I suspect she would be a good person to bring on your next exotic vacation to make sure you get great photos!
Love, Laurie

One Down, Three to Go...

Posted Oct 16, 2008 8:59pm

Well, that was easy. After nearly 5 hours on an IV, I am very pleased that I decided to have a port implant last week. Other than looking like a tiny alien is about to burst from under my collarbone, it’s not much of a bother. Unless I wear a seatbelt. But I can work around that, and ‘tis the season for scary special effects, so I can’t complain.

Last night I had a difficult time sleeping, which I attribute to first of three days of the steroids necessary around each session. Fortunately, a friend recently told me about a “Healing Sound” concert she attended that was quite impressive. I sampled the collection, ordered a couple of CDs and received them just in time to load into the iPod. A fascinating arrangement of gongs, Tibetan bowls, didgeridoo and intermittent chanting, it reverberates through your entire body. You can listen to clips at SoundEnergyHealing.com
I had first listened to them yesterday on my lunch break while doing the 30 minute detox footbath and it was so relaxing that I fell asleep in the chair! It was just as effective last night, and I woke up feeling quite refreshed. Thanks, B!

Dave & I arrived at the clinic at 10:00 a.m., and after I was comfortably settled into a big green recliner and plugged into the drip line, I kissed him goodbye & sent him off to work. The treatment areas are very small, with little room for visitors. There is enough room between the three recliners that patients don’t feel crowded, but can still carry on a conversation with each other when we choose to do so. One of my “roommates” in today’s session said she was going to make her port into a necklace after it was removed – her way of thumbing her nose at the cancer she knows she beat.

The treatment started with a blood draw, which I’ll do weekly, followed by anti-nausea meds. Each drug is given separately, and takes 45 to 90 minutes each, depending on the dose. The first was herceptin, and then taxofere. Just before starting the last round, carboplaten, I took a bathroom break – eeeeeeuuuwwww! The nurses laughed and nodded knowingly at the puckered expression on my face as I came out of the bathroom. The upside is that my kidneys were appropriately detoxifying. The downside was it smelled like rancid popcorn!! I know, overshare. Happy to report it all normalized by the second break.

As usual I overpacked. Essentially, I prepared for a cross-country flight. The neck pillow came in very handy, and I had time to watch a couple of movies on the portable player as well as read 2 chapters of “Crazy, Sexy Cancer Tips.” But the second book and two magazines were extra weight, not to mention most of the snacks I lugged along in my mini-cooler. I never did get to the iPod music, because I never felt like snoozing. I was alert and comfy for the duration, and by the time we left about 3:00 p.m., I felt good enough to have gone to work. Not knowing what to expect, I had not scheduled any appointments for today, but tomorrow is a full day and I anticipate I’ll be raring to go.

The cheerful nurses hovered attentively, checking up on meds, and swooping en masse to get the name of my movie (“Night on Earth”) when I laughed out loud. The room divider had two candy dishes – one with Tootsie Pops and the other with ginger candy for nausea. Have I every mentioned I am a ginger addict??? I use it in my juicer, and could easily devour a bag of Trader Joe’s crystallized ginger (the one without the sugar coating) or their new ginger chips, which are thankfully a fraction of the calories. I keep stocked up on Stash Lemon Ginger tea, and even keep some at the office in case anyone feels nauseated. So I felt right at home!

I don’t mean to make light of this process; some of the folks that came and went during the day were obviously very ill. But not everyone was, not everyone was hairless, and the response to treatment appears to be as mysterious as the disease itself. Both of the ladies in my treatment pod warned me that taste buds become useless, and even when hungry, nothing is appealing. I am ever grateful for my juicer; I think it will make it easier for me to ingest a lot of concentrated nutrients without having to force solid foods if I’m not in the mood.

Dave is a little apprehensive about my focus on vegetarianism, but I have so many fabulous cookbooks on the subject, that everything will be delicious. We rarely eat red meat, and every meal is primarily veggies as it is. Just a little compromise; I’ll make sure he’s well fed and make sure there’s always some chicken on his salad! A year without alcohol will be interesting, but I know I’ll come out of this healthier than ever.

With the assistance of some wonderful colleagues, I’ve narrowed down the supportive supplements that will be most effective in the process, and I’m actually excited to see how this unfolds. Thank you for all your love, support, healing gifts as you carry me along this journey.
Love, Laurie

Tuesday, May 19, 2009

The Journey Begins

Posted Oct 11, 2008 9:49pm

The mythologist Joseph Campbell describes the archetypal hero’s journey as an ordinary person faced with an extraordinary quest. The result is discovering one’s greatest strengths by facing one’s greatest fears. I’m packed for my journey, carrying your love and support, confident that more guides await me in the forest of fear. Preparation started on Sept. 25, when I had a second oncology opinion from Dr. Kristie Bobolis at Sutter Roseville. Dave and I knew right away that she was “Dr. Right.”

Warm, knowledgeable and supportive of good nutrition, she was in alignment with my intuition that 6 sessions of chemo is overkill (my word), and she recommends four. She used the back surface of my lab report to draw pictures of how cancer cells can travel, and explained the reasoning and effects of the chemo. She also recommended that I have a port implant, to prevent the irritation of being needled for a year. Ugh. It means 2 more surgeries, but now I understand how I’ll appreciate it in the long run.

Dave’s office is 5 minutes from this oncology center, which will be a blessing once I start treatment on Oct. 16. During the several hours of each session, he will be able to travel to & from the office without the ordeal in Sacramento, which is at least 30 minutes each way in congested highway traffic.

After an hour Dave left, and Dr. Bobolis and I continued our conversation about her approach to care as well as my philosophy and state of mind regarding this adventure. I found it fascinating (a kind word) that in countries where research is supported by government, rather than the pharmaceutical wizards, there is a more sensible rein on health care costs. Doctors are paid fairly without the meddling of insurance companies that suck up financial resources. Best of all, foreign research found that cancer/chemo treatment can respond to much shorter periods of time and lower dosages – with results that are just as effective as the long, expensive protocols supported by American drug companies. Go figure.

So with Dr. Bobolis as my Guide on the next phase of my adventure, I feel confident to don my armor, mount my unicorn and trot into the deep forest as I travel along the road of healing.
The next day I flew to Rhode Island for a ten day vacation, divided between my family and a trip to Cape Cod with several close girlfriends. My brother, Mark (“Maahk” in Rhode Islandese) and his wife picked me up at the airport, welcoming me with an extra raincoat, umbrella, a chilled bottled water, a crisp apple fresh from the orchard, and Deb fussing as always to provide comfort to a weary traveler. The feeding had only just begun.

They safely delivered me through the rain to the place we called home from the time I was 16, where my Dad still lives with his wife, Muriel. After hugs and kisses all around I received my next of many commands over the next few days, to “Sit, eat…” Who could resist? I savored a “leftover” dinner of roasted chicken, their garden-fresh green and yellow string beans and cauliflower, a sweet potato stuffed with walnuts and cranberries, and homemade apple pie.
My bags were over-packed in anticipation of the unpredictable New England weather, so it took three of us to drag them upstairs to my room. Despite the comforts of home, my sleep was unbearably restless the first night. The air was heavy; typical of the region, there was no breeze. In no time, the dense humidity made fast friends with my hot flashes and they ganged up to bully me into a drenching sweat. Bleary eyed, I foraged around and found a window fan that aided in my defense. It was certainly noisy about its victory, and its rattle dangled me just at the brink of deep sleep. But by the next night temperatures had dropped considerably, and the autumn chill soothed me into dreamland for the rest of the week. Ahhhhhh!!!

The weekend at my Dad’s was mostly cloudy and drizzly – characteristic of early autumn in New England. Mornings brought an occasional break in the clouds; the air was delightfully crisp and fresh. It smelled of rain and moist leaves, with a subtle lingering scent of smoke that had curled from the chimneys the night before. Rather than dampen the mood, it was comforting to bundle up a little, shielded from the morning mist. The house is on a hilltop, backing up to a vast lawn and a 50 foot granite cliff. The area is densely wooded, each home on about an acre of lush landscaping and brilliant green lawns, the result of incessant humidity and frequent rain. It’s hell on the hairdo, but great for the foliage.

My early walks started down our long cobblestone driveway, and I carefully avoided skidding on the slippery surface of the moist granite. Cradled in a thin layer of moss, they are embedded with history, worn slick from centuries of trampling by countless footsteps, animal hooves, and rattling wheels - from carts and wagons to the horseless carriage. In our lifetime, we polished them with rubber treads from generations of cars, trucks and grandchildren’s tricycles bouncing across their durable surface.

Dad retrieved each stone during the ‘60’s when they were abandoned in the rubble as old streets and walkways in the area were torn up to make way for the new. On weekends he would venture out early in the morning in his green Rambler station wagon and scavenge through the ruins, loading as much as the car could carry. Returning home with his salvage, we three kids helped unload the hefty rocks into piles that he would later artfully lay into partially submerged, even rows. The final result is an impressive sweep of about 2000 square feet of cobblestone leading from the house to the circular blacktop area of the driveway, all of which is lined with flower beds and old oak trees.

Every meal was delightful – whether planned or serendipitous. One of the finest treats of the weekend was Muriel’s clam zuppa, a tomato based sauce made with a bountiful mixture of fresh seafood. It is served over a mound of spaghetti, and accompanied by lots of Italian bread to sop up leftover liquids, a big salad and plenty of wine all around. What made it especially delectable is that my Dad and Uncle (who joined us for dinner) had gathered the quahogs (giant clams) by the bushel on their last clam dig of the summer, and then froze them for later feasts. We gobbled down the smaller clams raw on the half-shell as appetizers, and I could smell the ocean in every lemony slurp. Over the evening a variety of relatives stopped by for a visit, succumbing to the temptation of Muriel’s fluffy-crusted homemade pies – a key lime and a custard crème to die for.

It saddens me every time someone tells me they don’t cook, especially those that are searching for a natural way to heal. Not only is it essential to physical health to eat fresh, whole food, but the process of creating a meal is a ritual that nourishes the soul, celebrates life and demonstrates gratitude for each ingredient. My grandfather used to appropriately call packaged meals “dead food.” We are losing the art and ceremony of nourishment as kids are brought up not knowing why there is a stove taking up space in the kitchen. Even if our busy schedules don’t allow the luxury of cooking each meal from scratch, so much is lost by not taking some time during the week to prepare ahead of time, to have wholesome, home made stuff we can “grab” instead of microwaving a plastic clump filled with god-knows-what.

In stark contrast to the hubbub at home, I visited my Mom at the nursing home each day, bringing her tasty fresh snacks and juicy gossip. Although her diabetes is under control now that she can’t sneak the foods that contributed to this problem, she is not able to walk, and does not like sitting up in a wheelchair. By nature she prefers solitude and chooses to stay in bed watching TV rather than participate in any social activities. The staff at her facility is wonderful, and she obviously enjoys cheerful banter with them during their frequent visits through the day as they tend to multiple needs of the residents. She was thrilled to see me, and I was happy to find she is feeling feisty enough to get argumentative. When I visited last Christmas, the previous doctor had her so drugged that she was incoherent and couldn’t even feed herself. Only after she was hospitalized and nearly died due to a painful infection, about which she couldn’t communicate, did they take her off all the meds and restore her back to mental normalcy.

Every moment was spent with family in various combinations until Tuesday afternoon when they packed me off with clean laundry and enough leftover clam zuppa for eight people. Lest I go hungry for a moment, Deb managed to squeeze a ziplock full of her freshly homemade wine biscuits into my bag before she dropped me off at the airport to meet a friend arriving from Sacramento.

I had brought my luggage to my friend Maya’s earlier in the day, as she lives five minutes from the airport, and spent some time as a volunteer body in the class she was teaching for up and coming yoga instructors. She had another class that evening, but picked us up at the airport and delivered us to college hill in Providence to explore until she was done. The pristine architecture around Brown University and RI School of Design is hundreds of years old, a mixture of brick, stone and Victorian structures that are breathtaking. In the late afternoon, deep golden sunlight speckles across their surface through the shelter of ancient lush trees, and flowering shrubs cuddle snugly against the low wrought iron fences. As nightfall softened the skies and chilled the air, we found a charming Chinese restaurant on the upper level of an old worn-brick building, and we warmed up with the exotic spices of our steaming meals. Hidden in the subdued light of golden sconces, we were inadvertently entertained by the colorful stream of college kids that flowed in their flirtatious packs through the streets below.

After a little browsing through the shops, Maya gathered us up for the long, dark drive to our rented house in Falmouth (“Fal-mith”) on Cape Cod, where 2 more friends had arrived the day before. The house was set deeply behind the trees along the unlit winding road, so they turned on the high beams and waved us in! Our residence for the week was a 100 year old barn that had been converted to a 2-story-plus-a-basement home. We each claimed our favorite spot among the 5 bedrooms and settled in. Even though it was late, they had waited for us to have dinner, and the clam zuppa provided yet another feast. So began several days of succulent dining, adventure and merriment – and lots of pictures.

Always the first one up in the morning, I savored both the chilly air and a steaming cup of coffee as I read my meditation card in the slate-tiled sun room that faced the ocean. Although the beach was not within walking distance, we had a beautiful view, and the expansive lawn led to a thick tangle of forest. The highlight of the lawn was a rose-colored hydrangea that had been pruned to the shape and height of a tree with such precision that it formed an arch over two gently weathered Adirondak chairs. [See gallery.]

The forest floor is splattered with marshland, paved with a narrow boardwalk for dry passage. Beyond this is a raised gravel road that buries an old railroad, running by miles of open marshland. Our morning hike introduced us to an array of brightly colored berry bushes, from vibrant red and purple to pearlized black, and a tree covered with tiny berries of teal and chartreuse that looked like miniature Easter eggs. Along the way we nibbled rosehips the size of marbles, plucked from between the last of the fading wild pink roses. Our only regret was not having one more day to just hang out at the house, because from that moment on, we were on the go!

On Wednesday our travels took us to breakfast in Falmouth before Maya had to leave for another class. We continued on for exploring in Mashpee and dinner in Hyannis. For the most part, weather was on our side. A house-rattling crack of thunder woke us to heavy rains early Thursday morning. It was just enough to give us a taste of temperamental New England weather, and by 10:30 the sun was shining. After breakfast in a quaint oceanside restaurant in Woods Hole, we drove the forest-lined highway to Provincetown on the tip of the Cape.

This historic tourist spot is now characterized by its artists and gay population, so everything and everyone is colorful and intriguing. After browsing the fantastic shops and galleries that lined the narrow street, as usual, we picked a restaurant at random, and as usual, we were not disappointed. One of the side dishes was a carrot slaw with a magical quality that casts a spell on anyone who tastes it, causing them to uncontrollably blurt out, “Oh my GOD, that is AMAZING!!!!”

With an irresistible combination of flattering enthusiasm and relentless begging we persuaded chef to share the recipe. He came out to present a copy to each of us, and autographed each one in the expectation of its increased value when he becomes famous. Photo op!!! With all our cameras assigned to our flamboyant waiter, we shuffled the chef across the room and huddled around him to pose in front of the chalkboard menu boasting his daily specials.

The last leg of the trip was another two hour drive to Salem on Friday, to visit the infamous graveyards and buildings, as well as the October “Witch Festival.” This event was much smaller than we expected, but it was certainly in line with the theme of day. We entered a softly lit room in the main mall that was fully decorated for Halloween, and found about a dozen of the town’s best psychics and a handful of vendors that had congregated to set up their mystical posts. The folks we met were charming, the wares were unusual, and each station was uniquely enchanting.

Although one day is certainly not enough to see everything, we crammed in as much as we could. A note to travelers – the “Witch Museum” looks great from the outside, but the “tour” is dumb. Spend the $8 on one of the fabulous cocktails at the Hawthorn Hotel instead (the “Vampire’s Kiss” has sweet, scary swirls of red, and the ghostly pale Chocolate Martini was the best in the state!). Then enjoy the trolley tour of the town – including the House of the Seven Gables!

The cooler weather in northern Massachusetts had coaxed the earliest fall colors from the trees, and they were the perfect seasonal frames for the memorial statues and old buildings. [See gallery.] We waited out a cloudburst while having a scrumptious lunch at the reputedly haunted Hawthorn Hotel, which felt more cozy than ominous. The high point of the day was an old-time photo place that was based on haunted themes, rather than that of saloon girls. In preparation for the Salem jaunt, Kat had made each of us flowery witch hats, and they fit right in to the costuming for our portraits!

We usually returned to the house by 9:00 pm; my sides still hurt from laughing at all our antics, but I’m pinky-sworn to secrecy. I can share that the language classes became a standard feature of the evening’s entertainment. As a RI native, I was the official translator, and would get a barrage of, “How do you say… [in Rhode Islandese]?”

Essential expressions for the traveler:

Fuh gedaboudit: i.e., forget about it, or “Don’t even consider it.”
Nah fuh nuthin: Not for nothing. Introduces a topic you’d rather not bring up, but will do so just to rub it in, such as, “Nah fuh nuthin, but it woont kilya ta cawl ya muthah maw than once a ye-ah.”i.e., I hate to bring it up, but it wouldn’t kill you to call your mother more than once a year.
Bub'bla: a drinking fountain
Buh-day'duh: a starchy vegetable; the sweet variety is known as a yam.
Chow'duh: soup made from clams
Da-boat'a-yuhz: the both of you
Flah'ridder: A warm southeastern state where New Yawkiz love to retire
Hah'ruble: Horrible. Used interchangeably with Tev'uble (terrible).
Jeet?: A question asked prior to offering a meal (Did you eat?)

Two of the ladies left early on Saturday, so Kat & I stayed at Dad’s that night, with a 20 minute commute to the airport on Sunday, rather than hours from Falmouth. Ironically, he and Muriel spent the weekend in another area of Cape Cod, so we could leave early the next morning without waking anyone. We spent the afternoon touring downtown Providence, with stunning walkways by the canal and a 6 story shopping mall. Nah fuh nuthin, but it should be illegal to have both Godiva AND Lindt chocolate stores within a hundred mile radius of each other, not to mention in the same mall. Fuh gedaboudit – if you don’t resist, you get on the scale the next day and feel haahruble!

Providence has recently undergone architectural and cultural transitions that attract both locals and tourists. At sunset we were enthralled by the waterfires, which entertain and educate thousands with a different ritual each week ( http://waterfire.org/about-waterfire/welcome). An extravagant sound system delivers music that is relevant to each ceremony, and the final result is an experience that stimulates all the senses. This particular event was called “A Thousand Ships – marking the bicentennial of the abolition of the transatlantic slave trade.” The organizers passed out 1,000 water bottles to the spectators for the “libation ritual.” As one of the actors poured water from a silver bowl into the canal, we all emptied our bottles into the waters, each representing a slave ship voyage that left from RI.

This was followed by a torch lit procession to different sites that had significance in the slave trade. Among the vessels in the water is a gondola featuring a fire juggler – and of course, there are several links on YouTube, including these:

www.youtube.com/watch?v=-BZvuzz95Ho&feature=related
www.youtube.com/watch?v=wEMVV3a1ytI&feature=related
www.youtube.com/watch?v=AB44qjmlJoc&feature=related

My brother invited us to stop by after the show, and he’d “Throw on an extra steak.” In Rhode Islandese, this means a banquet awaits. New Englanders love seasonal decorations, and Deb’s enthusiasm is unsurpassed. Every surface was decorated - including the centerpiece, placemat and napkins. Not only did we have yet another spectacular meal, but we were entertained by a screaming sword, blinking pumpkins, dancing witches that swung from the ceiling, and a yakity skeleton whose motion sensor reacted with the bellow of a spooky monologue.

We caught an early flight on Sunday, and it was good to be home with enough time to unpack, pick up some groceries and rest up for the busy week ahead. It was a rejuvenating vacation on many levels, and I felt refreshed and enthusiastic to get back to work on Monday.

My decision to transfer chemo care to Sutter Roseville was reinforced when I met with the oncology nurse this Thursday morning. Laura is well informed and compassionate, and told me I would “love” having a port. Not only does she encourage good nutrition, but was she was also able to provide information on supportive vitamin supplements during chemo. This is in stark contrast to the staff at the chemo center in Sacramento, which I learned is only located in the same building as Sutter, and is actually a different company.

Another surprising bit of information is that because herceptin is part of the treatment, the other drugs are not as brutal as the standard chemo, and not everyone loses their hair. There are a lot more possible side effects of the chemo, but everyone responds differently. My hair will at least thin, so the scarves will come in handy, but in any case, I don’t think I’ll bother with a wig. I was also under the impression that I couldn’t color my hair for at least six months. The latest advice is to use gentle products, because the new hair is fragile. Just as chemo doses are not as strong as they were, good hair products now have fewer damaging chemicals. “All things in moderation” seems to be the common theme.

The Roseville “infusion room” is arranged in small areas of 3 chairs each, in close proximity to the nurses’ stations. I asked her if it was really necessary to have company, or if I would be fine on my own. Although it is necessary to have a driver, she agreed it was “really boring” for anyone to sit and watch me for 3 hours unless we had a lot to talk about, and I could relax alone or watch a movie on my portable DVD player. This was great news – with Dave’s office close by, I’m fine with being delivered and picked up later. Maybe I will just relax and not do anything for a few hours. Now THAT would be a new experience!

Yesterday morning I went to Sutter Hospital in Sacramento for the final surgery for what I hope is about a year, to have a port implanted in my chest. This eliminates the need for hunting for veins to poke for chemo, meds, blood draws and similar gruesome procedures. I feel like a bionic woman.

As always, it was an exciting day in the pre-op room. My nurse was a fast-talking, sarcastic bundle of energy from New Jersey; we spoke the same language and kept each other laughing. The beds are separated only by curtains, the staff is friendly and thorough with their explanations, so conversations blend into an uplifting cacophony. The lady on the other side of the curtain was in her 70’s and being prepped for a hip replacement by another team. We had chatted in the waiting room, and she was quite a firecracker. When her nurse stopped in to see if she needed anything, she loudly requested, “…a tall young Italian with a nice butt!”

Everyone involved came in to check my name and birth date, offer reassurance, review what they will be doing and ask if there are any questions or concerns. My surgeon this time was Dr. Lee, who is Dr. Guirguis’s husband, and he was just as wonderful. Dr. Aurora was the anesthesiologist, and I felt reassured just hearing her name. I told her it sounded like the name of a goddess, and Dave said it meant that when she started working on me, I’d see the Aurora Borealis! Mary, the coordinating nurse that shows up for every procedure, sat on the bed, held my hand during a cheerful chat, and highly encouraged me to take my narcotics after this one. She gave me a big hug before she left, and the surgical nurse was next in line. She held up a syringe and announced with delight that Dr. Aurora had sent me a dose of “happy juice.” Not every anesthesiologist does this, but it sends you off to dreamland before being wheeled off to the OR. When all her paperwork was done & we were ready to travel, Dave gave me a goodbye kiss just before she added the happy juice to my IV. Mmmm. Nice.

It was a longer, more delicate procedure than I had anticipated, which makes me extremely grateful that I was not conscious. Some doctors do this with just a local anesthetic, which seems like torture. The aftermath is not as uncomfortable as the lumpectomies were; it’s like having an achy shoulder joint, since it’s just below my collarbone near my shoulder. I have a low dose of pain meds, taking about half the recommended amount. I feel a little ditsy, but I can stay awake and relaxed enough to stay put, catch up on the updates, and enjoy a few chick flicks. Is this “relaxation” thing what normal people do? It’s quite lovely.

I still don’t know where this journey will lead, and as I get down to the wire, it is getting a little scary. I had a dream the other night that I went in for chemo and they gave me a giant martini glass filled with a lemony yellow liquid. I told them I thought I wasn't supposed to have alcohol while I was doing chemo, and they said it was OK, this was my treatment (chemo is referred to as a "cocktail"). The next night I dreamed they gave me a giant yellow pill that looked like a SweetTart. I was concerned that I couldn't swallow it, and asked if I could just take a bite, because I didn't like taking drugs. I'm not sure what the significance of all this yellow is. Maybe it's the healing energy of the third chakra? Sounds good to me!

Thank you for all your calls, notes and emails, for adding me to your prayer circles and Reiki circles and sending so much love and compassion. Your love and support carries me every moment and has made it all worthwhile. May it come back to you a thousandfold.
Love, Laurie

Hair, There and Everywhere

Posted Sep 18, 2008 3:49pm

Finally – with the cooling weather, the hot flashes are less brutal. During the day I wear sleeveless tops, clip up my hair and keep on going. Night time is still the worst; despite the combined breezes of the ceiling and floor fans, the flashes shake me from my sleep almost hourly. Some days I just don’t feel rested, and that can be dangerous to my peace of mind. Unrest releases the goblins in my head that make me cranky and worrisome about crazy stuff like the hair issue.

A stylist friend called this week to assure me that I will absolutely love my new hair, and I should really look forward to the transition. She shared her experiences about clients that have already gone through this, and offered to come to my house and “buzz my head” when the time comes. We had a good laugh about how crazy our priorities can be. When I found out I had cancer, my attitude was OK, fine, now we know – what do I have to do? But the hair… this is so nuts. I have finally realized this new obsession is nature’s way of dangling a useless subject to distract me from worrying about the cancer.

Last weekend the weather was glorious, and I took advantage of the temperate sunshine to start cleaning up the fading garden. I attacked the overgrowth and undergrowth without mercy, and more than once I was tempted to end the hair topic once and for all with some extensive hedge trimming of my own locks. I suspect Dave would have put me away somewhere quiet if he looked out to see me knee deep in garden waste, hacking away at my hair with the Fiskars PowerGear hedge shears, even if they are the “only hedge shears to be awarded the Arthritis Foundation Ease-of-Use Commendation.”

This hair fixation reminds me of the time I did a ropes course and discovered there are times when my body and thoughts have no regard for each other. Secured by a harness and pulley apparatus, I was to demonstrate my willingness to conquer challenges by climbing a 50 foot pole, balancing on the top and leaping off. It made sense at the time. As I started the ascent, my thoughts were, “This is going to be so exciting, what a wonderful lesson, I’ve been looking forward to this…” etc. My body said, “You are so full of it. You are going to die.” Despite the affirmations my knees turned to rubber; every cell in my body followed suit and shook uncontrollably. I kept climbing. I leaped into the void. I lived. So there. This too will pass.

On all these cancer issues, I recognize a particular stress pattern. The night before a consultation or event I’m restless and worrisome. I’m fine for the meeting, then intermittently jumbled and teary for the rest of the day. My chattering brain prevents any restful sleep that night; the next day it’s all processed and I’m fine. So last week I attempted a system overload and it actually minimized my worry time. Although the Thursday “chemo class” triggered my usual reaction, I actually had no post-funk response around the radiation meeting on Friday, or the Relay for Life on Saturday. I think I’ll cram all the appointments together from now on.

The Thursday morning “chemo class” involved a private meeting with a cheery oncology nurse, one of few people who can talk faster than I do. She rapidly scanned the pile of papers describing the process, schedule, drugs, possible side effects, what to do and what to avoid, and I signed enough paperwork to make me wonder if I hadn’t taken on another mortgage. She also wrote a prescription for a wig, but between the hot flashes and the hypersensitive skin that goes with chemo, I'll probably just stick with the colorful head wraps!

I feel great, and don't start treatment until 10/9, after I come back from vacation. Then it will be full steam ahead - 6 sessions of regular chemo (three weeks apart), and a year of herceptin infusions, also every 3 weeks. Chemo is big business and growing exponentially; I have to do 6 cycles instead of the usual four, because research in the past six months has shown it's more effective. I can't help but wonder who financed this research…hmmm…. Can you say “pharmaceutical?” 3 weeks after the regular chemo, radiation begins - 5 days a week for 30 sessions. Six months after radiation is complete, I will meet with the plastic surgeon again to see if insurance will cover refurbishing the damage that will be left in the wake of all this. Then five years of Tamoxifen. This is quite a transition for someone who never even takes an aspirin.

I have to bite my tongue as I listen to their “nutritional advice.” Sadly, because natural remedies can't be patented to produce a substantial profit, there is no financing for extensive research on the effects of nutrients/herbs/supplements on cancer, or during chemo. So they are all passed off as "dangerous" and interactive with the drugs. I have been warned repeatedly not to take any more than a single multivitamin, and especially to avoid antioxidants or herbs during treatment because of the possible interactions with the chemo. But there is no hesitation to prescribe a multitude of pharmaceuticals to counteract any symptoms. They may have horrific side effects, but at least those are a known factor.

And there are NO dietary restrictions. I find this very odd, since cancer cells thrive on glucose. The “nutrition” booklet from the American Cancer Society actually recommends refined carbohydrates, processed foods, ice cream, sugar-loaded shakes like Ensure, and other sugary foods. The logic to this is that chemo wreaks havoc on the taste buds, and since it is wiping out all the cancer cells, the most important dietary consideration is to make sure the patient gets sufficient calories in any way possible. I probably shouldn’t be so snooty about the whole thing. If and when that time comes for me I may be quite eager to dismount from my high horse, drop to my knees and plead for the extended companionship of Ben & Jerry.

I’m still waiting for insurance to approve the MUGA scan of my heart prior to treatment. When I pressed for details, Virginia of the Infusion Room reluctantly said they used to do the contrast dye injection for this directly into the chest – YUCK!!!! - but believes they now do it into the arm. If my internet research is correct, it is now injected into the arm. If not, I will graciously accept any sedatives they are willing to load me with. No wonder I felt teary after I left.

On Friday a patient brought me a jar of the "Chinese burn creme" to protect me from the radiation (miracle stuff!!), and an hour later Dave and I were sitting in the exam room of the oncology radiologist in Cameron Park. She is from SF, and said that in the Bay area, she was treating women with breast cancer in their 20's and 30's. Call it a conspiracy theory, but I find it ironic at best that each year chemical companies sell us over a hundred thousand compounds to dump into our environment, and then make more money on the other end to "cure" us from the damage. If they spent half the time removing all the junk in our food and environment that's causing and contributing to cancer in the first place, we wouldn't have to spend as much time and money treating it. But that’s another discussion.

She gently relayed what she assumed would be difficult news - for the rest of my life, I will have to get MRIs instead of mammograms. I expressed my delight and gave her the condensed version of meeting my ancestors during the recent MRI-induced vision quest. Her location facing the door prevented her from slowly backing out of the room, which may have been her choice at the moment. Dave remarked later how her expression changed from empathy to concern that I had probably lost my mind. I wasn’t embarrassed in the least – I intend to make the best of whatever they throw my way. Well, except that possible – but not likely – needle-in-the-chest thing.

The bottom line is that all the health care providers are saying my risk of recurrence is extremely low, but they have to bombard me with all this junk because of the HER2/neu gene. The other good news is that all the medical folks and survivors I've met with this week keep reminding me that everyone's response is different, so who knows? Some people actually breeze through this with little or no reactions, and I plan to be one of them.

On Saturday a friend invited me to join her group in Placerville for the Relay for Life cancer fundraiser. When I told Dave my plans, he immediately jumped in to join us, which is very special to me. He never hesitates to rearrange his work schedule to take me to all the medical consults; he's such a love. Our walk was at 5:00 p.m., and the late afternoon was balmy and beautiful. She presented me with a sparkly pink beaded necklace, her “Courage” bracelet, and a purple “I’m Living Proof” t-shirt. One of the discussion topics during our walk was at which point one is eligible to wear the “Survivior” t-shirt. Five years? Post-chemo? Post-surgery? Dave concluded that once you get the diagnosis, you are an official survivor - until you’re not. Works for me.

The bands that played throughout the day and night were fabulous, and volunteers of all ages put obvious effort into organizing the event. The relay path was lined on one side with luminaries, and on the other with information and memorial booths. Each white luminary bag was decorated by the kids that volunteered, and were labeled as either “In memory of…” or “In support of…” It was heartbreaking to see so many luminaries, representing too many victims of this disease. On the other hand, it was so uplifting to know there is such a high level of concern and awareness, and talk to women who have bravely survived much worse than what I face. They look and feel great, offer such positive support, and I always make new friends.

After our walk three of us claimed a picnic table in the shade to watch the continuing relay and enjoy our smorgasbord of snacks. Cooled by the light winds of the early evening, we watched the full autumn moon rise above the circumference of trees. We hooted and hollered our appreciation for the band and the relayers that passed our table, some walking, some dancing, others on canes or in wheelchairs. I chose to leave before the ceremony of lighting and reading each luminary. Over the past several months I’ve found that so much information at once about cancer can get overwhelming and depressing, even if it is supportive. It’s just too much to grasp sometimes, and I can only take it in small doses. Sometimes it’s just too much to become so connected to how deeply immersed I am in this.

So it’s back to the garden for a metaphor that will make sense of all this madness. Despite my attentive care, nuts hedge and Bermuda grass have made a merciless invasion throughout the beautiful planter strip around the lawn, now gradually creeping into the hillside garden. The only way to control it at this point is to dig up all the affected plants and spray the weeds with whatever herbicides will do the job. I hate using this nasty poison, and I know it will wipe out the healthy plants as well, but my conservative efforts were no match for the aggression of the weeds. Once this malignant growth has been contained and removed, I can make a fresh start with a nourishing foundation, and better knowledge of how to keep the garden healthy and prevent the weeds from returning. As much as I will miss the temporary loss of vibrancy and color, I know some things need to be sacrificed. In the long run, it would be counterproductive to fertilize anything while I’m trying to kill off the stuff that could eventually choke the life out of the entire garden.

Bring on the Roundup… I’m ready for the overhaul.

Thanks!

Posted Sep 2, 2008 2:55pm

Thank you, thank you, to all of you who send your good wishes, contribute your suggestions for remedies, offer to take me to appointments, sit through my treatments. And I really appreciate the private message with the term “infusion room” instead of “chemo room.” It conjures up visions of a relaxing day at the spa!

We had a fabulous weekend, which certainly helped get my mind off the usual routine. Saturday we enjoyed the warm late afternoon and cooling evening at a mini-Woodstock in Shingle Springs. These friends have 5 wooded acres where they hold an event they call “Humpbuckle” every Labor Day weekend. They are part-time musicians, and other musicians and bands of all genres and levels of fame gather there to camp out and entertain. This was Humpbuckle #25, and a grand celebration it was!

Our hosts are an engaging pair and by the end of the night Mr. “Humpbuckle” had blasted through my protests and dragged me out to the concrete dance floor of the “band barn.” What followed in his confident grip was an invigorating style that can only be described as an eclectic combination of two-step, crazed tango and intoxicating (intoxicated??) disco twirls. Thankfully, he stopped short before trying to lift me into the air, and we didn’t fall to the ground once, which I can’t say for his previous partner. I haven’t had that much exercise since a self imposed jump rope competition in the 3rd grade; we looked like quite a pair and certainly added to the entertainment!

Sunday morning we headed for Davenport (north of Santa Cruz) to join the camping entourage of Dave’s Dad and his wife. His Dad was born on this property, which had been in the family for many years before, and everyone refers his nearly 100 acres of redwood forest as “The Ranch.” Their one bedroom home is nearly a mile from the main road, which itself is several miles off the coastal highway. The home of their daughter and granddaughter is a quarter mile further along their well maintained dirt road, which runs parallel to the creek.

About 100 yards before the main house there is a vast clearing with a fire pit, large barbeque, and rustic outdoor kitchen facilities. It is the common area that easily accommodates the growing crowd that comes to camp and celebrate every Memorial Day and Labor Day weekend. The seating along the six long picnic tables gets tighter every year, as the size of the group expands with each generation. The biannual event started with about a half dozen couples and their kids. As the kids grow, they eventually bring partners who become spouses, and then their growing families.

If the kids ever tire of drenching all their available clothes as they explore the shallow creek, they are entertained closer to the main house in a play area, with an assortment of swings, structures and even a climbing wall. There is no shortage of areas to set up tents, and since our camper had to be put to rest a couple of years ago, we stay in the permanent camper near the main house. This tiny luxury accommodation is set up on a platform within listening distance of the creek (and walking distance to the real bathroom), with a queen sized bed, a real floor and electricity.

Even the changing generations of dogs look forward to making new friends with the other family dogs, and quickly introduce them to chewing stones in the stream and the art of rolling their wet fur in the dried redwood carpet, followed by affectionately rubbing on everyone to share the slobber.

The main activity, besides indulging in the overabundance of food and beverages, is an ongoing card game interjected with exaggerated stories and really bad jokes. Folks come and go through the rounds, taking breaks to socialize by the fire, hike, read, snooze or supervise the latest project on the lumber mill.

One of the younger women survived advanced breast cancer a few years ago, which involved a double mastectomy, chemo and the double reconstruction. She is doing great, and offered wonderful words of support and encouragement. Two of the other women in our age group talked about their recent scares with suspected lumps, and I encouraged them to follow up closely – and soon.

We discussed the cancer experiences of our own and our friends like we were exchanging tips to improve our latest hobby; it could have just as well been about beading or backpacking. Have we come to accept the toxicity of our planet that endangers our health as a way of life? Although medical treatments are saving lives, we had better recognize so much cancer as a stern warning that our planet is reclaiming its power to demand balance, before it defends itself by killing us off with our own poison.

On a lighter note… the temperature changes frequently, so we trek about with layers of clothing to sustain our comfort according to the level of shade or sun. Sunday night I welcomed my hot flashes to keep me warm! I had an incredibly restful sleep under a light sheet by staking a claim in front of the open window of the camper. Dave slept closer to the closed door, shivering under layers of blankets and comforters, every now and then nudging toward me to absorb some radiant heat. To avoid the risk of the consequences, he kept a safe distance – close enough for comfort, but not enough to elevate my temperature, in which case I’d kick all the covers onto the chilly tile floor.

After community breakfast on Monday morning I spent some time for exploring alone in the gentle silence and the clean air. By late summer the creek that ripples through the property is hidden under giant ferns, flourishing in the moist shade, occasionally splattered with the scarce sunlight as it sneaks through the protective evergreen canopy. This delicate row of green umbrellas diffuses the tranquil gurgle of the water over the rocks, the only sound to be heard once you are a short distance from the campground. The redwoods cast a spell that disconnects me from the rest of the world. No cell phones, no computer; nothing can get in, and nothing exists beyond this soaring shelter.

We periodically discuss if this would be a good place to retire, but ultimately agree that after a relaxing week or so we would go stark raving mad. Although we enjoy the brief seclusion, we love our own home, the proximity to civilization and the connection with our friends both near and far. Life in Folsom reminds us that there is ongoing activity, whether or not we chose to participate at any given time. “The Ranch” seems to suspend time and eradicate the rest of the world. Although this can be a soothing reprieve a few times a year, an extended stay starts erasing the memory of life to that moment.

There are still more experiences we want to remember than forget, more connections to make than to release. We enjoy our socializing, create solitude in our garden, and love our life. The following prayer from the Rig Veda is always on my mind, helps me stay on track, and assures me that at any given moment, we are surely in the right place at the right time.

God made the rivers to flow
They feel no weariness, they cease not from flowing;
they flow swiftly like birds in air.
May the stream of my life flow into the river of righteousness.
Loosen the bonds of sin that bind me.
Let not my work be ended before I am done
and let not the thread of my song be cut while I sing.

Where’s Patch Adams When You Need Him??????????

Posted Aug 31, 2008 10:16am

Side Note - Must-see movie: Big Fish (PG-13; anyone younger than that might not be interested.)

Last Friday Dave & I spent 3 hours (most of which was in the waiting room) at Sutter Cancer Center Hematology & Oncology Dept. (yikes…) At this stage I’m under the no-nonsense direction of Dr. Delphine Ong. Right from the start, she politely made it apparent she has no need for levity or conversation content that is any less than dead-on serious. Probably a bad choice of adjective, but it certainly describes her demeanor. She is matter-of-fact and methodical, and spent over an hour with us, with a thorough exam, detailed history, research information, online demonstration, and treatment options for the standards of care for my state of health (or lack thereof).

In the cancer world, I’m considered “young and healthy,” which I understood to mean I’m under 70, not on any medication, and have no other medical conditions or health problems. The benefit of this is there are extra medications I can bypass in the chemo process because I have a relatively low risk for some of the side effects chemo can have on my immunity. She also recommended that I not have a port surgically implanted for the time being, because I have “young,” strong veins and a minimal needle phobia. More good news – that means two surgeries I can avoid. The other good news is that I can wait until after my trip, so treatment will start October 10.

My tumor/s are classified as Stage 1 because of the small size, and Grade 2/3 (with 1 being the worst) as far as risk of recurrence. Being on the edge of medium to low risk, she doesn’t want to take any chances, and will consider this Grade 2 (medium risk). That requires a more aggressive program of 6 treatments (one every three weeks), rather than four. More good news – I can schedule treatments for Fridays, which will give me time to rest over the weekend and get back to work on Monday. She said people can generally keep up about 75% of their regular work load (based on a 40 hour week). Since I only work 75% of the week to start with, I'm hoping I won't miss a beat!

My greatest concern is that herceptin is brutal on the heart. Dr. Ong explained that chemo usually involves a combination of three drugs, one of which is already damaging to heart tissue. However, they substitute a different drug for that one when herceptin is involved, so the heart is not getting a double whammy. I'm sure “whammy” was not the medical term she used, but you get the gist. I will also have a base line heart scan before I start treatment, and follow up scans every 3 months to make sure everything is holding up.

When we completed the meeting with Dr. Ong, she escorted us to the chemo room for the tour. After introductions all around, she abruptly vanished, leaving us in the capable hands of Virginia, who scheduled my “chemo class” for 9/11. The chemo room is enormous, spacious, bright and lined with comfy-looking recliners. It's sad to note there is no lack of job security in the chemo industry.

They encouraged me to bring friend/s, snacks, laptop, music or DVD players – whatever would make the four hours or so most tolerable. For the most part, everyone looked like they could have just as well been relaxing on the deck of a cruise ship, except for the presence of the IV lines and the lack of tiny umbrellas in their beverages. It was rather comforting in a surreal sort of way.

Despite my weak protest, Dave insisted that he stay with me through at least my first session, since we don’t know what to expect. I’m not trying to be overly independent; I just don’t see the necessity to have anyone hanging out for the day watching me absorb dripping drugs. I think it’s a good idea to be dropped off & picked up, amusing myself or snoozing during my stay. I assume that will change quickly if, as rumor has it, the treatments make me feel progressively crappier, crazier and in greater need of support.

I plan to bring along my iPod, portable DVD player and humorous reading to start, so if you are nearby and have any funny books I can borrow, I will certainly appreciate them. (I loved the entire Janet Evanovich series and “When You Are Engulfed in Flames” by David Sedaris.)

After those 6 treatments, there will be about 35 radiation treatments (daily except weekends). Those are just a few minutes each, not uncomfortable at the time, but they typically damage the tissue, leaving a feeling of a severe sunburn. I have my remedies ready for that, also, and I’m always open to suggestion. The radiology oncologist at Sutter Sacramento was thoughtful to call me when he received the referral last week, and ask if I would prefer to do these at a closer facility, which would cut my commute in half. You betcha. I’ll be meeting with Dr. Goldsmith in Cameron Park on Sept. 12 to talk about preparation for the radiation.

As the summer draws to a close, I spend a lot of time working in the garden, pruning, weeding, pulling up overgrowth. It’s my favorite place to be busy and reflective for hours at a time, and every task is rich with metaphor. There is bittersweet camaraderie in knowing my life will be synchronized with my garden through the seasons over the next 6 months. I’ll be crowned with color as I drop my leaves this fall, rest dormant to regenerate through the winter, and burst into full glorious bloom in the spring. I’ve witnessed my garden survive this cycle every year, and it always returns more vibrant than ever before. I can do this.

Click here to see the gorgeous scenes of Autumn.

In a gust of wind the white dew
On the autumn grass
Scatters like a broken necklace
Bunya No Asayasu

Yippy Dogs and Gypsies

Posted Aug 28, 2008 2:32pm

Funny thing about this cancer, it never lets you ignore its existence. It’s as though I cheerfully agreed to pet-sit a spoiled, yippy dog for the rest of my life, and didn't realize what I was getting myself into. Never satisfied, it nips at my heels when I try to walk away, yelps for no reason in the middle of the night, and growls whenever I consume anything that is not potentially curative to my condition. My life and work go on as usual, but we are both bound by the leash, and I’m never quite sure which of us holds the controlling end.

One of the few things I collect is Tarot cards; apart from any mystical correlation, they are like mini-galleries of the art, history, and the mythology of different cultures. The first card of the Tarot is “The Fool,” (on our modern deck, the Joker), a wanderer who dreamily gazes at the sky while nearly stepping off the edge of the cliff. He represents that part of us that operates on intuition, hope and faith, and connects the real world to the imaginary.

Across cultures, this card illustrates a little dog at his heels, a constant companion that is always ready to warn him of impending danger so he can safely continue his adventurous life. In my Fool’s journey, I always have faith and hope, occasionally pat the yippy dog on the head, and thank this annoying critter for reminding me to do everything I can do to stay on track and get well.

The positive side of this is that it forces me to be more creative in designing each day, and communicating that I can still function, despite this pest. I am repeatedly surprised during follow up calls to patients that seemed to have fallen off the map this summer. They typically ask, “Oh, are you back at work??” My goodness, I never left! Each surgery was on a Thursday or Friday, and I was back to work the following Wednesday – just a couple of long weekends off, shorter than most summer vacations. Sorry - I'm not sure what I said or didn’t say to confuse the issue, but I am trying to clarify it.

So I’ve sent out blast-emails with cheery promotions to let everyone know the office is still open, I’m alive and plugging along as usual. In case anyone is afraid of what they may see, be assured to know I even look a little healthier than usual. I’ve been quite faithful to the eat-all-you-want-of-the-foods-you-hate-diet, dropped a couple of pounds, and the profuse sweating from the hot flashes gives my skin an extra special glow.

August was a little wild on the dietary side, but I used my birth-month as an excuse. (Leo’s have an entire month to be worshiped for their existence, as opposed to common non-Leo folk, who get only a day.) I had thought a diet consisting mostly of vegetables was supposed to enhance my state of serenity, so you can imagine my surprise when the sight of kohlrabi made me hostile. I lightened up a little on the strict diet for a while, but now I’m back to the healthy routine. I do feel a lot better, and I attribute some of that to the distant, sweet memory of TJ’s peanut butter malted milk balls.

I’m happy to say that I snapped out of the recent hair panic episode after receiving a beautiful, burnt-orange pashmina shawl as a birthday gift. Suddenly inspired by a brief scene about a sultry violin-playing gypsy in a recent movie, I thought, “Hey, I bet this would look good on my head!” After a few flips and wraps and ties, my head was wrapped in a stunning turban-like configuration with its long tails and fringe cascading down the front of my shoulder. Add some big earrings, and hand me a violin. Oh boy… I dug into my assortment of colorful shawls, scarves and sarongs that have been hidden away for far too long. Only the tablecloths escaped my wrapping frenzy.

Dave came in at the point where I had completed the task with a cherry red cut velvet shawl, its beaded tassels falling into my forehead in a dripping crown. I announced it was my “Christmas hair” and he shared my excitement (or at least humored it sufficiently). This could be more fun than wigs.

Tomorrow I have my first chemo oncology appointment with Dr. Ong, and on September 12 I meet with Dr. Goldstein, the radiology oncologist. From there my treatment arrangements for the next year will unfold. I’m planning a visit to the east coast from Sept. 26 to Oct. 5, divided between a visit with my family and a girls’ trip, so I don’t want to start any treatments until after I get back. These first visits are preliminary, as there is a lot of preparation involved, so I think I’ll be right on schedule.

Rumor has it that not everyone loses their hair. That would be nice, but I may wear the head wraps just because they look so cool. My understanding so far is that even with chemo, most people stick pretty close to their regular work schedule, although maybe not with their usual pep. So the office is open, we’re as social as ever, and you never know what I’ll have on my head!

Monday, May 18, 2009

Sweet Dreams

Posted Aug 16, 2008 11:33am

Finally! After 3 days of headaches, hot flashes and sleepless nights, I slept like a rock last night. I admit it, I had to take a pain pill (left over from the post-surgical prescription, which I seldom needed then) to get rid of the final stubborn remnants of the headache. But enough was enough. And thank you to the angel among you that suggested I keep an icepack close by at night. I wrapped my 10x12” icepack in a light towel, and the few times I was awakened by spontaneous combustion, I rolled my neck and upper back onto that icy relief. AHHHHHHHH! My sister-in-law Debby sent me a spaghetti-strap short cotton nightie I can wear around the house, and it is wonderful for wicking away excess drench… This morning I’m enjoying a cup of Sir Jason Winter’s Healing Tea (motto, “Let’s create a healthy life!”) donated by another friend. Thank you so much; you all are taking such good care of me!

Yesterday was such a wonderful day. On Fridays I close the office at 2:00, and usually spend the next 3-4 hours finishing up insurance billing and paperwork. This week I was much more efficient; I caught up on everything between patients, so I was actually out of the office by 3:00 – to keep with the Olympic spirit, it was a new world record!!!! I had a leisurely 2 hour sushi lunch with my girlfriends (another new world record). I am so sick of healthy food I could scream, so I relished the spicy rolls of sweet rice and raw flesh. Yum! This week I splurged on a video camera that is no bigger than my cell phone, so we took some silly recordings of this rare event. Such a deal!! RCA Small Wonder - $79.95 (and free shipping) at amazon.com.

Last night Dave & I went to a River Cats game; his annual company picnic. We had the “party block” which was awesome – the two upper decks were open and breezy, and the choice of tables or row seats gave us the chance to socialize. Baseball is about as exciting as a snail race for me, but Dave is always a charming date, and the game is a fun excuse to get together with everyone. Good parking karma, too – second row from the front gate!

I have the laptop on the kitchen table, where I can enjoy our glorious garden, watch the red and yellow finches compete with the jays and robins to splash in the waterfall, and share the morning breezes with the wind chimes. We’re getting ready to go for a walk while it’s still cool, and then we’ll take some time to attack the weeds. They took advantage of the fact that I wasn’t supposed to do any lifting for a couple of weeks, and sneaked in beyond the blocking fabric. This weekend I get my revenge.

The SoulCollage for today is for those who go before me, leading the way so I know there are good days and bad, and we will make it through all of them. And thank you to all of you who share these pages; it is so comforting to feel your presence, and know you travel with me.

I am the One who leads with trepidation.
Not always brave, I tiptoe and leap.
These well worn trails are a sad reminder -
too many have trudged this route gnarled with fear.
Yet our souls accept this invitation
to unite in the pilgrimage of the Reluctant Sisterhood.
What would we do without each other?

Things That Go Bump in the Night

Posted Aug 14, 2008 1:02pm

It really annoys me that I can’t fool my brain. Despite my cheery update yesterday, by 6 p.m. I had a roaring headache and was melting in a hot flash. When I checked my biocommunication (Zyto) test in height of this fit, it showed several off-the-chart indicators of emotional stress. Go figure.

The headache didn’t subside, even after dinner, so I took a handful of Myocalm PM to assure a restful night. It worked – until 2:30 a.m. when my brain shook me awake by chattering its worries about how and when to take the dreaded step to shave my head. My headache pounded to make sure I didn’t lose this focus, and threw in a one of those random waking nightmare thoughts about brain cancer, just for something else to add to the mix.

This fear, too, will pass, but it was another transition period where the inner voice and images just would not shut up. Should I just cut it short at first to lessen the blow? Should Dave be there so he won’t be shocked at the results? Will it be fun? Will it be horrible? Will it look great with big earrings? Will the wig be too scratchy when the chemo makes my skin sensitive? Will the scarves fall off because my head’s too slick? SHUT UP!!! Why am I being such a big baby over this????? This is so CRAZY; cancer was a walk in the park, but the thought of being hairless keeps me awake at night – and it’s going to be only a flash in time.

I’m a Leo – not only am I annoyingly vain, but my mane is my glory, and nothing makes me grumpier than a bad hair day. Like a kid with nightmares, I kept getting images of a scene in the animated film “Narnia” where the wicked witch is about to kill the Lion, the ruler of the good guys. But first, to add his degradation to her victory, she orders her deformed gnomes to shave his mane, a symbol of his power. It was painful to watch – and it was a cartoon, for God’s sake.
By 4:00 a.m. I had it with tossing and turning, and got up to take a few more Myocalm. Of course, washing them down with water sent me on several trips to the bathroom. I was groggy, grumpy, my head was pounding, and I started feeling nauseated. Yuk.

While stumbling back to bed, I understood why people take anti-anxiety drugs and sleeping pills… The lack of sleep is what will eventually make me crazy. I know I could get them if I asked. But I really do want to experience the flood of emotions that goes with all this – for now, anyway.

I did a few rounds of EFT. That helped the pain and nausea a lot, and made me feel more in control of the ride. I fell asleep around 4:30 and enjoyed a couple of hours of nightmares that involved Dave & I riding in a car with neither of us steering, gangs robbing my neighbors and drive-by shootings, where I ducked for cover. Have fun analyzing THOSE...

First thing this morning, I checked the “Locks of Love” website,so I might donate my loss as another’s gain, and found the minimum length requirement is 10 inches – I’m at only 8. I felt the embarrassment of having a treasured belonging appraised, only to find it was worthless. I’ve been had.

So I scurried over to the Carepages, and read the updates on the other people I’ve been following – the young mother of 2 who has been through a year of chemo with no end in sight and is still celebrating every moment, the photo of the 8 year old girl with her shiny head, giggling at her Chucky Cheese party, the woman that recorded every single day for the past year of her journey so others can be comforted to know there is another side. One day she was celebrating her friend’s victory over cancer, a few days later she was mourning the woman’s death after a truck slammed her car into a tree.

In his book The Hero with a Thousand Faces, Joseph Campbell describes the hero’s journey, a symbolic quest that transforms the hero and renews the ailing community. There is a heroine or hero in each of us, striving to express her/his highest purpose in this lifetime in order to help others learn the same lessons. We just never know when or what that challenge will be, but there is no turning back once it is presented.

Back to Narnia – the Lion shaving and assassination later revealed itself to be a symbol of his humility, and the strength to submit to the enemy when it was necessary. His reward was that by allowing this sacrifice, he was able to rise again with greater strength – and his glorious mane.
The joys and terrors, celebration and heartbreak are what bring us together, remind us that we are alive. I’ll bypass the meds for now, and write instead. I went through my SoulCollage cards this morning and pulled a couple for today. The one I called Fear is what happened last night:


I am the One Who
blocks the route to your dreams.
Terrifying and elusive,
I challenge you to admit
my magnification
is a phase of your own imagination.



















but Strength is my guide for today:





I am the One Who
honors the cycles of transformation,
the purpose of your frightening phases.
A compassionate protector of those who seek,
I patiently guide as your power emerges.