Blarf: Dear B of A

I'm frustrated, and don't feel like spending time on B of A's chat to get what SHOULD be a simple, logical answer. I'll bet I'm not the only one asking this question:

Dear B of A rep...I thought I'd easily get an answer by calling your "Customer Service" line with what I thought would be a simple question, followed by a straightforward answer.

THAT was NOT to be, as I've hung up, after waiting on hold for 20 minutes. I'm not up to going through your chat, as my experience with various "customer service" chats supports the idea that doing so on your site would only DOUBLE my frustration as I try to dialog with a rep having probably 20 other "conversations" at the same time.

Question: Do I REALLY have to set up my Bank of America credit card as a "Pay To" account on your site?!

I'm logged in, I can see my account balance and transactions on YOUR site, and I'm being prompted to enter my credit card number TWICE?!

Do you really not provide a link from my credit card statement to simply pay you? I'd think that since credit card companies encourage us to go paperless, they'd make the process EASY. But I guess I'll be providing you with some good old-fashioned paperwork to process when you get my stub and check...that's OK...those checks were getting dusty, anyway.

Signed, Valued Customer "Thank you for holding"

November is Lung Cancer Awareness Month

I am the face of lung cancer:

Here I am, a few months before I became a lung cancer statistic, one of over 215,000 people in the US diagnosed annually with lung cancer.

I received my diagnosis in December of 2008, three days before my 53rd birthday.

What was originally thought to be stage 1 cancer was staged at IV, after surgery to remove the upper lobe in my right lung. 2 years later, I'm still in treatment, still fighting.

According to http://www.lungcancer.org/reading/about.php
“It is the second most diagnosed cancer in men and women (after prostate and breast, respectively), but it is the number one cause of death from cancer each year in both men and women.”

The most immediate question I face, when sharing my story is "Do you smoke?" I am a non-smoker.

Think about it: many of us know people who have smoked for 30 years or more, and THEY DON'T have lung cancer.

According to the Lung Cancer Alliance: Over 60% of new cases are never-smokers or former smokers, MANY of whom quit decades ago.

So, folks--let's get past the stigma, and make the battle against the #1 cancer killer as fashionable as the battle against breast cancer.

Lung cancer kills mommies, too.

HOSPITAL, “THE ENDORPHINATOR” AND MORE TREATMENT

Welllll…..after my last post, I forgive myself for whining! Three days after posting that Blog, I found myself being admitted to Scripps Encinitas Hospital for what ended up being a 4 night “confinement.”

And now, it’s taken me SO long to update my blog, it seems like old news.

On the evening of Sunday, October 3rd, I found myself heading to the Emergency Room. I know I was feeling crummy, because I had my husband drive…I usually do ALL the driving. I had been feeling progressively worse throughout the day, and with an increasing fever, the on-call oncologist recommended I head in. I was given a CT scan, which revealed that my right lung was not functioning at all, and appeared to be surrounded or filled with fluid. I was scheduled for 2 procedures the next day: a bronchoscopy to look inside the lung, and a chest tube insertion to withdraw fluid. It was a LONG night, with my not being placed in a room until around 2 AM.

The bronchoscopy revealed nothing abnormal in the lung; all the fluid was in the pleural cavity (the pleura is a sheath that surrounds the lungs.) I’d already had the pleural cavity drained 4 times before, by a simpler procedure, called a thoracentesis. Normally, I could feel increasing pressure which told me I needed to get the fluid drained, but I hadn’t experienced that sensation this time. Within 2 hours of having the chest tube inserted, I noticed an improvement in my breathing and my energy. That night (Monday) I also had a transfusion because my hemoglobin measurement was low.

I credit the nurses with working with each other after my first night to coordinate the timing of IV hook-ups and changes with vital sign checks. I had many WONDERFUL nurses (RNs and LVNs), and then there was “Bad-attitude Anna,” who acted like everything she did was an imposition. I discovered that venting to my RN resulted in having me removed from Anna’s “care!” There is evidently no reason to put up with an LVN with an attitude!

Contrasting wonderfully with Anna was the staff member (nurse?), named Ben who wheeled me from emergency to my room on the 2nd floor. We conversed during the short (5 minute) trip through the halls and elevator, and he shared that he would be celebrating his birthday that evening, and that his wife would have a homemade carrot-cake, with homemade cream cheese frosting waiting for him at home. Of course, I commented on how wonderful that sounded…but little did I suspect that he would seek me out the next day to bring me a piece of his birthday cake! I think I made some of his co-workers jealous!

Another high point was a visit by a “Pet Ambassador,” an English Bulldog named “That One,” who was dressed up for Halloween as “The Endorphin-ator.” Isn’t he adorable!

As a result of my hospital stay, I got several “2nd opinions.” My right lung did not fully re-inflate after the fluid was removed, but that has evidently been the case after the prior thoracentesis procedures. My lung re-inflated by about 75%. This is sometimes called a trapped lung; the accumulation of fluid in the pleural space causes the lung to compress, and not re-expand, even after the fluid is removed. Four different doctors are still unable to come to a consensus as to the source of the blood I have been coughing up, since the fluid is building up in the area OUTSIDE the lung . Whatever the cause, surgery isn’t a reasonable investigative or corrective option, because I have active cancer.

The chest tube was removed Wednesday night 10/6, after draining about 1.8 liters from the right pleural space, with an understanding that the likelihood is high that the fluid will re-accumulate; it’s just a matter of when. I was told that if the pleural space refilled soon, I might consider having a semi-permanent pleural catheter (a PleureX catheter) installed, which would enable me to drain the fluid myself. Initially, one of my doctors indicated I needed to have it done before being discharged, but my thoracic surgeon fortunately recommended otherwise. This was something I need some time to digest and accept.

I was released Thursday afternoon, craving FRESH air, home-style cooking and undisturbed sleep.

Upon my discharge, I started keeping a daily log of my health, because I had noticed how hard it was to report on the chronology of symptoms based only on my memory. I felt wonderful and renewed for about a week. Unfortunately, within that time, I started observing that some of the symptoms were returning, starting with some wheezing and coughing (of blood.)

This past Thursday, two weeks after being discharged from the hospital, I had to have another liter of fluid drained from the pleural space. Fortunately, that fluid will be useful in determining the next line of treatment. A “cell block” spun from the fluid will be sent to a lab to look for tumor markers, which will enable a more targeted approach to my next chemo med. Not all patients with lung cancer exhibit the same tumor markers, and the presence of some markers indicates a stronger likelihood of response to specific chemo treatments.

I’ve spent all or part of the last 4 nights sleeping in the recliner. Last night, I was very discouraged; as the wheezing and fluid build-up was severe enough that I struggled to sleep even in the recliner…leaning against my back seems to exacerbate the problem. It’s almost a feeling of drowning in chest fluid, and the sound of fluid is audible to my husband next to me. I felt this sensation occasionally prior to going into the hospital. I finally managed to sleep for maybe 2 hours at a time (after midnight), going between the bed and the recliner. It wasn’t quite so bad on Friday, when I left a message for my oncologist, indicating I need to know who to direct my questions regarding the PleureX catheter. Unfortunately, he was out on Friday, and my symptoms worsened since then. So, the next step is to give another call to the oncologist’s office: I don’t want to wait until his usual late afternoon phone calls. I need to move ahead and get this fluid out so I can get some rest.

I wish the news was better, but I can manage to close on a humorous note. Those of you in my age group (and older) know that wearing reading glasses becomes an unfortunate necessity, as our arms get shorter and shorter (uh-huh.) It’s useful for some, including my husband, to have several pairs of glasses, as it makes it easier to find a pair when you need them. (uh-huh, yeah right…)

Well…it should work that way, but I don’t think a day goes by that I don’t hear my husband ask “where are my glasses” as he searches various rooms (in our very small house!) Unfortunately for him, he’s married to an easily amused and somewhat irreverent woman who embraces humor where it can be found. Look what I found in his office one day! I felt compelled to line them up for this snapshot, which I call “Where’s my Glasses?” (He wasn’t looking for them that day!)

LUNG CANCER WHINE

Well, PHOOEY…The best “F” word I can come up with now. I had such a wonderful time with my daughter and her family, AND her husband’s family these past few weeks, and I know I’ll be ready to share all the sweets on that later, but right now I’m “PH-n” grumpy. I know blogging right now is more like BLARFING, but if I can’t be honest here, where can I be? I guess I feel like my body is making my life a little prickly right now.

Hubby is out on a biological survey right now, and I’d normally be in creative mode, but I’m having a hard time concentrating with these flippin’ side effects.

NOTE WARNING: The following paragraphs contain details of symptoms which MAY set off the stomachs of some queasy folks (Renee, this might mean you!...I’m coughing, and it’s icky.) I share the following information 1) In order to hopefully help anyone else dealing with chemo or lung, (or other cancers), 2) to help my friends understand why I am laying a little low right now, and 3) so they can admire me for being so brave…oh, just kidding, but SEE…blogging is helping restore my humor already.

READ on, or skip forward to where you see: “SAFE TO READ FROM HERE!”

NO, thank goodness I’m NOT nauseous. But, crap, this year I’ve had so many digestive and breathing issues. Something in my body has changed, possibly the lining of my stomach and lungs, but I have to be SO careful about the quantity and mixtures of food I eat, otherwise, I spend the evening like I am tonight, CONSTANTLY salivating (for over 6 hours now), belching, coughing (including some blood), and spitting so I don’t swallow a bunch of gas by repeatedly swallowing. Not being able to eat as much or as frequently as I'd need to or like to is frustrating...I'm trying NOT to lose any more weight!

The coughing up of blood is something that has been occurring for maybe 6 months, and I’ve been through various tests to determine the source, with no conclusive answers. The cancer isn’t growing, according to the scans. One possibility for the bleeding is that the chemo is attacking the “infected tissue.” I mean, I look pretty healthy, ‘tho my stamina doth sucketh. (I joined some friends on-stage at a performance recently, and I could either sing or I could dance along, but I couldn’t move AND sing! Also, I was able to play ping-pong with my daughter and granddaughters recently (short rallies), but chasing the ball REALLY took it out of me.)

I know you’d rather see a photo of my daughter or granddaughter, but I’d better get permission before going there!

Anyway, the coughing up of blood issue waxes and wanes, usually subject to treatment, but this last time it didn’t clear up before my next chemo, so I started at a disadvantage. What this means is that I sleep with a pile of about 5 or 6 pillows, and usually only on my left side. This has been the standard for MONTHS. Sleeping on my right side or back generally generates coughing. Sometimes (like last night), I have to sleep in the recliner.

Also, the coughing and spitting isn’t limited to night-time, and sometimes it’s almost spasmodic. I carry a jar/spittoon around, and I’m very self-conscious about grossing people out. The coughing, spitting, and congestion sometimes can make it VERY difficult to talk.

“SAFE TO READ FROM HERE!”Between being self-conscious and having problems breathing/talking, I find myself getting a bit behind on my communications. I try to talk to my daughters and granddaughters when I can, of course, but sometimes that’s the only phone call I make during the day. I grab the time when my body decides to go along with my wishes.
So say a little prayer for my patience and my body…I KNOW this will pass, it has before, but I’m sure uncomfortable now. (I haven’t been able to paint or journal right now, and I’m working on a special video project for a friend, so nothing but photos to share for now.)

Creative Enlightenment, 101

My hair is growing back, though a bit more slowly on top, and baby-fine! I asked my friend to take pics of me this weekend. This is just one of a few nice shots she got.

I continue to follow the ebb and flow of my 3-week chemo schedule. I’m about mid-way through, feeling pretty decent, and knowing I’ll be feeling better as I approach my next treatment. It’s just wonderful to have my energy back—-to have time to feather the nest AND indulge in creativity. All the better, as I excitedly await the arrival of my older daughter, and her family, including my 2 granddaughters. Since they all live in Hawaii, I only get to see them twice a year. Yes-yes--I know, "Hawaii is a great place to visit family", but I’d rather be able to see my granddaughters every week!

Creatively, (and otherwise) I tend to work on multiple projects at each sitting, doing one step on one project, setting it aside and picking up another, and another. (It’s part of my personal “style” in other areas, and maybe not very productive!) Dream Garden was a project I started months ago, and it wasn’t working for me. After enjoying the effects of adding a MUCH larger image bit to “Pet Your Sunflowers”, I tried the same approach by adding the magazine cut-out of pink flowers flowing from the top. It helped immensely, but I was ready to move on. I’ve committed myself to posting my progressive work on my blog, so after adding a little verse to the piece, I pronounce it “complete” and am ready to turn the page of my journal.

Sleepless in Del Dios” was also started months ago when I was having nightly sleep issues. It started with doodling on black gesso, where it languished for many weeks, as I looked at the project and found NOTHING else to inspire, until I found an ad for a prescription sleep aid. Then-more waiting for inspiration, until I found the shimmering flower image from a card I’d received, followed by the tissue. Again, I consider this more of a learning experience (as in “a page of the same doodle is more cohesive than a bunch of random ones”).

I’ve wanted to delve more into digital art and use my scanner. I was THRILLED when I bought my HP ScanJet for a dollar at a local garage sale, but then found I was disappointed with the image quality when scanning 300 dpi JPEGs. While reviewing a 2005 issue of “Cloth, Paper, Scissors” (anyone else find inspiration in that publication?) I found the recommendation to scan images in as 600 dpi .tif files.

What an improvement! So now, instead of photographing my work, I’m scanning it in! AND I went back to a reference book from my Photoshop class to straighten out one of the images that had scanned crookedly! AND, while I was reviewing my class notes, I also experimented with creating a line drawing from a photographic image. Oh, yeah, AND I learned how to use my images in text to create my new banner (above: “HalfRaven.”) I am obviously easily pleased, and sense that I’ll be testing out many new techniques for working with my photos and scanned images.

I stumbled upon this link a couple of weeks back. The artist’s name is Ben Heine, and he calls his work “Pencil vs. Camera.” I’ve NEVER seen anything like this, and I sure wish I was talented enough with pen or pencil to try and emulate it, but I DO find it inspiring. I know you will too!

"There is not one blade of grass, there is not one color in this world that is not intended to make us rejoice" John Calvin

Of family and facials…

I’m slowly emerging from my chemo cocoon, having spent most of the extended weekend in bed. Monday, I was able to wield the broom upon our entry, which was more pleasurable than it might sound. The lake glinted silver and blue, the birds swooped and dove, and a hint of fall sent me in for another layer before continuing with my chore. I rewarded myself after my half-hour workout by sitting in the sun watching the holiday boaters, letting the breeze provide the perfect balance to the sun’s warmth. In spite of (or because of) my energetic start to the day, I found myself ready for a 2-hour nap before noon.

After snoozing, I was eager to start catching up on the lost hours from the previous days, but I knew I needed to pace myself. I called my Mom-in-law before heading to the market. Gloria is an active 87-year old, who still kicks butt on the pool table. (That’s her pool cue in its case in the back seat of her car.) She regularly exercises her expertise in worrying about “us kids,” so I find myself cautiously navigating the conversational waters regarding my cancer. I personally find the level of worry interesting, for one of “the faithful,” but it is a comforting thought to know she’s praying for us every evening.

Monday’s conversation was upbeat and somehow we landed on the topic of pampering ourselves, via massage, pedicures and other body treatments. I’ve been spoiled in that the only massages I’ve had have been in-home. Currently, neither massage nor pedicure costs are expenses I spring for, but it’s hardly a hardship.

One treatment we both pondered over is the facial. Call me a dinosaur, but what’s the big deal about facials? Even when my income was decent, I couldn’t get myself revved up to plop down $100+ to have someone massage stuff on my face, especially when I have a masseuse who can do my whole body for less than that. I mean, how many nerve endings are there in my face, and how long can the “facial high” last? I’m still holding the gift certificate one sweetly-intentioned friend gave me 2 years ago for a “chemical peel!” I know they don’t use battery acid, but this doesn’t sound like anything I would want to do to any part of my body, let alone my face. Of course, someone with a cupboard full of brown rice and quinoa is probably not likely to do anything to themselves that has the word “chemical” so obviously involved.

At any rate, it was a sweet conversation, bonding with Gloria. (I’ve only been married to her son for a little over 2 years.) I lost my Mom last February 20th (2009)…less than 2 days later, Gloria lost her husband, Willie, of 50+ years. My Mom had been suffering from Alzheimer’s, but her trip down what was expected to be a long, slow path was halted by a stroke. Willie’s passing was not unexpected, as he’d been suffering from congestive heart failure for several years. Nevertheless, last year was a tough one for Gloria.

So, it was heart-warming to capture this moment last June, 4 months after the passing of my father-in-law. My brother-and-sis-in-law like to add a little friendly competition to our gatherings, via the game of “washers.” Everyone has their own style, and Gloria’s funny-bone was certainly tickled by the delivery of my sis-in-law’s sister, Lollie. I can’t watch this video without smiling!

Back to Monday evening, where I treated myself to a personal massage of my legs and feet, using only essential oils and 100% natural lotion (all recognizable ingredients) while viewing “national treasures” on ANTIQUES ROADSHOW. The older I get, the simpler my simple pleasures get.

Finally, I’d like to share another artistically inspiring link. Susan Tuttle’s images require no words. I’m MUCH more tempted to spend $130 on her “Visual Poetry” (digital alteration) workshops than on a facial!

Update on my lung cancer treatment

As promised (or threatened) I’m temporarily (for today) switching my blog post back to the subject of my original posts…the status of my lung cancer. While I’ve tried to avoid making my life all about my cancer, I do want to keep my friends updated as to the results of treatment. I’ve enjoyed delving into new artistic pursuits, and it’s been a lovely experience being able to share this with you. It helps me take my mind off some of the more difficult aspects of my cancer.

When unpleasant side effects of cancer or treatment take control of my body, it can be difficult to stay positive. The last few days have been like that. I’ve noticed an increase in pain and pressure in my back and side…issues that previously arose last winter (2009)after 10 months of treatment…which ended up being indicators that the cancer was back, after receiving a clean scan in late October.

Extreme congestion, coughing and shortness of breath have recently severely impacted my ability to sleep, to get the rest I need, to refresh through sleep, that most welcome respite from these stresses. Being tired hurts the spirit. It makes it too easy to not worry about the future.

When we talked to the oncologist last month, we were told that I would likely switch off of my current treatment after my next scan, which occurred last week. Eight treatments of Taxotere is about the max that most folks can handle, and I’ve just completed eight. The side effects become cumulatively worse, and the med becomes less effective.

We (my husband and I) were pleasantly surprised to hear yesterday that my cancer is mostly stable, with a bit less metabolic activity (showing a slight reduction in cancerous activity.) So, we jointly made the decision to continue on with the next 2treatments of Taxotere, which will make a total of 10 treatments. I had my 9th treatment today, which means I’ll be out of it for about 4-5 days, beginning this Friday.

During those down-days, my activities consist of the bare minimum: living in my PJs, and basically only sleeping and eating (OK, and toilet activities, of course.) My appetite seems to hold steady, amazingly, considering I’m not really burning any calories. I sleep, get up to eat, then go back to bed or to the recliner. I’m realizing that my attempts to downplay the impact on my life, (calling it a mini-vacation) have made it difficult for friends to realize how this impacts the usually energetic person that they know. Sometimes, even holding a book or watching a movie is more that I can handle. It IS an interesting experience for someone who has always been so active, but it does pass.

I sometimes have weird food cravings; last time it was Corn Flakes, which I haven’t purchased in YEARS! I’ve also craved canned chili and grilled ham and cheese. Who knows what it will be this time!

Anyway, the basic news is the cancerous activity is very slightly reduced, but considered to be holding steady. I can appreciate that! Funny, how not having the energy to do housework REALLY makes me appreciate doing housework when I come out on the other side of the chemo funk! Looking forward to some serious dusting come Tuesday!

Bring it on!

My Creative Discovery Voyage

It looks like it’s been about 2 weeks since my last post, so I can’t feel TOO guilty about overwhelming the inboxes of my friends with pleas to read my most recent post. I know some folks post almost daily, but I can neither get comfortable with nor manage it. However, inspiration struck yesterday, after discovering a magazine called “Artful Blogging.” These days, it seems like I can find artistic inspiration most anywhere, but it usually directs me to get out paint, papers, glue, scissors and photos.

Recently, driving in the city of Escondido, I caught a glimpse of this funky old gift shop, which is housed in an old metal building. All the buildings around it are fairly new, so the gift shop seemed to stand out, especially (to me) because it was COVERED in morning glories. I made a point of heading over there early the next morning, when the light was better…something about morning glories just makes me smile.


“Picnic in the Valley of Flaming Geraniums is a little (5” x 7”) mixed-media piece I finished recently. I started with a gel transfer of a photo of geraniums from my yard, then layered with acrylic paint and art papers. Up until the addition of the bright yellow and orange papers I felt lost as to where I wanted the piece to go…the colors were putting me to sleep. The colorful addition of the papers gave me my 2nd “YES, YES!” creative moment, and also blessed me with the title, which somehow made me giggle. Of course, what is a picnic without ants? They were added with my Staedtler pigment liner pens.

This last piece was one of the quickest projects I’ve done. I’d been sitting on the background for some time, a result of my having decided to try and use up paint from one project by starting a new background. When I received an invitation to a house-warming party for a friend, I pulled the background, and added a “house” created from classified ads for real estate. After adding the recycled magazine pages (along the bottom and the clouds in the sky), I stippled more sky to calm that screaming yellow, added a photo from my friend's wedding, and used the Staedler pen to draw in the tree. I’m not sure it really goes with my friends decorating, but I had fun making it! (I've posted a small image, since she's kind of a private person.)

I’m enjoying sharing this Creative Discovery Voyage with friends who I’ve known for a while, as well as those who I’ve met more recently through these mediums. For all, I’d like to share links to other artists (no matter the medium) who inspire me.
Lisa Bebi is an artist-friend-of-a-friend. I first “met” her on Facebook, through her art, and am pleased to I know the possibility exists to actually meet her F2F, since she does live here in San Diego County.

Some day, (when I’m back in the working world and not paying COBRA rates for health insurance!) I’d love to take one of Lisa’s workshops…I’m most interested in her “Paintover” workshops, in which she has her students use magazine photos, personal photos and paint. Sounds simple, but I find her work whimsically inspiring. Maybe Lisa can help me cross off one of the items on my mental Creative-To-Do list. "Entering an Art Challenge" spooks me a bit, but the incentive to win a piece of Lisa’s art might help me overcome that fear!

Check out Lisa Bebi's page!

On a personal note, I’ve got a PET scan coming up on September 1st, and expect to get the results the following Tuesday. That means that I’ll “get back to business” in an upcoming blog, and get all my friends updated as to the status of my treatment. Until then, go out and make your own beauty!

Art Journal pages

I spent a few creatively self-indulgent days last week, but guilt hasn’t overtaken me, because I haven’t had the opportunity to repeat those efforts this week. (I DID work on a video project for a friend’s birthday, but it was a COMPLETELY different effort.)

When my hubby told me he wanted to head out on an overnighter in Idylwild with herpetological (snakes and lizards, for you non-scientists) buddies, I made MY plans to let the creative juices flow.

The above journal page, which I’m tentatively titling “Pet Your Sunflowers" was a project which was languishing, due to some over-thinking which my friend Suzanne accuses me of. (OK, others have done the same…) I’ve heard many art journalists finish a page in a night. HUH??? I finally gave up on trying to layer various yellow acrylic paints on the sunflowers in an attempt to block the blue sky background from peeking through, and turned my attentions to my growing stash of art papers and images. (This prompted another note-to-self: “When stuck, change mediums.”)

After adding the hand image, topped by some tissue, I tapped into my fabric stash. When I laid those apple circles down, I experienced an immediate “ah-ha…YES!” moment. (I’ve since experience another similar moment, but that project isn’t done yet.) I’m happy with the illusion of depth here, and the fact that my eye wants to wander over the image.

“Words shift Shape” was the 2nd journal page project I attempted. The background was laid out in my favorite color combo: butter-cream yellow and rose. I’ve collected words & phrases for years (goes back to my song-writing days), and I imagine I’ll turn to that list for future projects, as others turn to their stash of papers or other ephemera. I figure I’ll have a lot of fun with the “jar” rubber stamp in future projects.

In the meantime, I’m having creative withdrawls…hoping to indulge tonight.

Creative pursuits

I THINK this will be a relatively quick post (given that it’s ME who’s writing. Who knows, my fingers seem to have a life of their own.)

Having time off in between chemo treatments has afforded me a chance to pursue some new creative pursuits. I’ve been musically inclined for years, but will admit to laziness about pursuing mastery of instruments. I’ve got a half-way decent voice, and performed for a number of years, but it was too much work. I've exercised well-received efforts in song-writing, but it’s hard to go anywhere with it without backing myself up on an instrument (other than the kazoo.)

I love color, and have been told I have an unusual color sense. (Sometimes, the word “unusual” covers an effort to be polite…I’ll choose to take it otherwise.) A friend and several magazine articles turned me on to art journaling, and one thing has led to another, as I’ve dipped my creative toes into drawing, painting with acrylics, and other mixed media efforts.

These are newborn efforts of maybe 2-3 months, and sharing these publicly is kinda scary, but one of my recent projects (while in Hawaii) was focused on setting aside fear as it relates to creative experimentation. It’s hard, as the perfectionist in my lays out obstacles before I even try! Dumb! So, tho’ I sat down to share another image, I’ll share my “Fear Has NO Place” journal page first. The story is that I’ve wanted to experiment with drawing faces, but wouldn’t try because I didn’t want to deal with the anticipated first failures. So, YES, the gal in the image looks like she has a moustache, but that unfortunately is reality for many of us anyway! I also found that I was being too damn prissy about not getting paint, ink and art mediums on my fingers, so that’s another of the fears listed. I’m not sure that the page is done, but it’s fine for now. (Big step, Linda!)

The other image is one I’m very happy with. I call it “Postcard from a Yard.” I started by creating a background using gel transfer of a photo I took of an iris. (If you see text out of place in my blog, I’m doing battle with Argentine ants…you don’t EVEN want to hear the words running around in my HEAD!) Anyway, I also used a photo my hubby took in Hawaii (he didn’t know he’d captured a beautiful spider web!), an image from a magazine, gauze from the medicine chest, and a free-be art paper (the postcard.) Added a bit of acrylic paint and some ink…and voila. I think this one is done!

Now, I’m on a roll, and had to play around with a photo of my lovely head (I changed my profile pic). OK, Linda, do some housework. (I HAVE been in bed for 4 days, and DO have some catchin’ up to do!)

Aloha, from California

Aloha from California! I'm getting re-settled after a 9-day trip to see da’ family in Hawaii. This gave me 7 days on the Big Island, and 2 days to travel.

I belched out a blog of frustration upon arriving in Hawaii and finding several problems with my rental. Most of you didn’t get my usual e-mail notifying (or warning) you about my post. You didn’t miss anything uplifting. Since I rent little apartments, relocating isn’t so easy, but I’m glad they were able to find another home available a few miles away, where I stayed for one night until the property managers could clean the rental and restore power to the refrigerator. I did lose some food that I couldn’t keep cold enough to trust eating (including a scarily warm Costco-sized package of chicken thighs), but most of the rest of the trip was much better!

It’s tough only seeing my granddaughters 2 times a year. At 2 years and 4 years old their changes are rapid and profound. Hearing those little voices call out “Nana!!” with excitement when they see me is THRILLING, though! We made as many memories as time and energy allowed…a couple of beach trips, a hike at the north tip of the island, and sharing some fun, goofy family times including prolonged games of “Babies”
(just add imagination)
and endless (painfully so to adults) Knock-knock jokes. (You don’t want to get me started.)

The afore-mentioned hike, to Polulu Valley really tested my endurance. We were at least able to rest on this lovely bench at the bottom before starting back up the trail. I think it was good for both my younger daughter, Karen, and I to change places, as she did a GREAT job taking care of me on the way up!

I did indulge in some solo time, including attending my first luau. I’d never been to one before, as I thought of them as too commercial, but was referred to “the most authentic luau on the island” through a young local fellow I met. I’m GLAD I went! Here’s a link to an abbreviated clip of some of the dancing…loved the power of the male dancers. http://www.youtube.com/watch?v=LYo64_PCSyE

I was also able to spend an art day with my older daughter, Lauren, thanks to her mother-in-law taking care of the little ones. Lauren showed talent in sketching (particularly facial portraits) from an early age. What with the responsibilities of raising little ones and limited space in her little house, she doesn’t have much of an opportunity to indulge her creative side. It was a wonderful day for both of us, and it FLEW by! The screened-in lanai at my rental proved a lovely space to indulge.

On my last night in Hawaii, the family met at Bubba Gumps (which my younger granddaughter pronounces as “Bubba Dumps.) While it might seem funny to eat at a chain when in Hawaii, it was my 2nd meal there on this trip. The food IS good…and we had a lot of fun together. Here’s a pic of my younger daughter, Karen, and her boyfriend, Dakota.


I flew back home on Saturday, and have settled back in, unpacking and making up for lost sleep. On Monday, I went in for another PET scan, got the results on Monday, and had my regular chemo on Wednesday. I’m back in the groove, so to speak. I loved seeing the family, but it is really wonderful to be home again. It does help that I’ll be seeing my granddaughters and one of my daughters in about 2 months, when they come to the mainland for a wedding.

Aloha!

July 8, 2010---Is it really possible that I woke to my alarm in Del Dios at 5:30 this morning? Because it sure FEELS like at least 48 hours have elapsed since I boarded the flight leaving San Diego, bound for Kona, at 10:30 AM California time. It is now after 10:30 PM, Hawaii time, (making it truly after 1:30 AM by my California internal clock) so I’m bound to be loopy…but the story goes a bit deeper than that.

(I’m unfortunately unable to post any pictures, because I haven’t picked up the parcels, including my camera dock, which I shipped over to Hawaii.)

I’ll wait to extol the virtues of my first-ever first-class flight. There was the icing on the cake of the inhumanly prompt transition from disembarking at Kona, to changing into my island togs, to finding my luggage already circling the carousel…only 3 minutes after the scheduled landing! And, of course, I was ecstatic to see my daughter and granddaughters after 9 months. We met at Costco, where I stocked up, in between hugging, kissing and playing with the granddaughters.

While I have previously stayed only in Kona, I decided on this trip to move north of Kona, where the VOG, or volcanic smog, doesn’t impact the air quality. As usual, I had arranged to rent an ohana unit, a “granny flat” type of rental which offers kitchen facilities, and which is more quiet and private than in hotels.

Since my daughter had to head off to work, I left Kona at around 4:30 PM, intending to get my Costco-sized packages of chicken, cheese and salad greens into the refrigerator, before heading back into Waimea to get additional foods. The 45 minute drive into North Kohala was beautiful, with the skies clearing and the horizon expanding the further north I headed. As I followed the provided directions to head uphill and eastward (or mauka, as it’s known on the Kona-side), I felt I’d really discovered the perfect place for me to stay. The grasslands climb up to the sky, the homes are widely spaced, and native Nene plod down the road. I even passed an unexpected botanical garden about 2 miles from my rental. I felt almost giddy!

I managed to find the rental around 5:30 PM (Hawaii-time) after a few false starts (due to inaccurate and incomplete directions.) This unfortunately turned out to be the first of several bumps in this road.

Continuing to follow the directions, I parked the car and entered the screened lanai, only to find that the unit had not been left unlocked, as promised. I was concerned about reaching Debbie, the property manager, since it was after 5 PM, but successfully did so, and she was able to direct me to a hidden key after making a quick phone call. I was becoming more concerned about keeping the food purchases cold, particularly the chicken.

As I opened the door I was disheartened to find the refrigerator unplugged, propped open and pulled partially away from the wall. The electrical receptacle behind the fridge was inaccessible to me, with a scant 2 foot space behind the fridge, and a wall and counter blocking either side. (My arms are not as strong as they used to be, and I was afraid if I managed to climb in there, I might not be able to get out.) I called the Debbie back, and insisted on getting some help. She said she’d try to find someone.

While waiting, I walked throughout the rental. It unfortunately became obvious it had not been cleaned prior to my arrival, nor in any recent time. Dusty insect carcasses (cockroaches and a 4” long centipede) littered each room. There were cobwebs throughout. Due to the amount of rainfall and leaf-litter here, I KNOW that both cockroaches and centipedes are to be expected, so it wasn’t necessarily their presence that concerned me…it was the fact that I could tell they’d been there a while. Another call was made to Debbie. She offered me the first night free and said they’d sent someone the next day to vacuum.

I’ll pass on entering into additional descriptive details of the status of the room, because what emerged was that a mistake was made: somehow communication failed between the room-booking department and the cleaning department of the rental agency. This, coupled with the fact that the apartment had only recently become a vacation rental, meant it had also been quite some time since it had been cleaned.

I turned on the A/C unit in the bedroom, and placed the perishables in front of it, while I waited for Debbie to find someone to bring ice, plug in the fridge and bring a broom. (She was on the mainland, and the property owner lives on the other side of the island.)

Debbie’s daughter/business partner, Leilani arrived around 7 PM. She and her friend Koa brought in some ice and plugged in the fridge. As I shared my discoveries about the condition of the rental, she immediately agreed with my concerns, saying would NOT want to stay there, and she didn’t want me staying there until it was cleaned.

It is our human nature to make mistakes, but Leilani saw to it that they made right by the errors. It is now morning--I was MUCH too tired to stay up to finish this story last night! The tale of how Leilani made this right is another story, which I’ll share with you in my next blog. For now, I am starving, so I’d better rustle up some grub!

Aloha!

I’m having a good “head day.”

Since I lost my hair, I don’t worry about having good “hair days,” and I do save on shampoo. I’m happy to know I really do have a well-shaped head. Until you lose your hair, you really don’t know!

I’m sitting in what I fondly call “the chemo spa.” This place is full of light, homey furnishings, wood floors, and kind & attentive staff. My sis-in-law, Pam is here to keep me company and entertain me (or is it the other way around?) We have really bonded since my diagnosis…add THAT to my list of “Things I like about my Cancer.” She hasn’t been able to be here the last few treatments, but not by her choice. Renee, one of my many kind friends has been attended the last 3 chemo treatments in order to provide “Healing Touch”, and since there aren’t always enough chairs to seat everyone, Pam thought it best to bow out. With Renee in Europe, Pam is happily back. It’s SO hard to pick between them, because I DO love the “Healing Touch” treatments! This pic is of my sweet sis-in-law.

Today, I am now having my 6th chemo treatment of a drug called Taxotere. Other than hair loss, fatigue and indigestion, I’ve not had much in the way of the horrific side-effects one thinks of when you hear of chemo. In addition to the hair on my head, I’ve lost over ½ of my eyelashes, and a few eyebrow hairs. The fatigue is mainly limited to the week following chemo, which means I’ll be spending this coming weekend, including July 4th, in my PJs. My body does seem to appreciate being able to sleep in daily until about 7:30 or 8. Before diagnosis, sleeping in usually meant 6 am…so I must be needing the extra couple of hours of shut-eye.

The indigestion isn’t something that I’m able to combat with my usual means, papaya tablets. Sometimes, the discomfort is extreme and prolonged, continuing for 4 or 5 hours, and the ONLY thing that relieves it is draping myself over a pile of pillows on the floor in an embarrassing position, hoping we don’t receive unexpected company. I call it “assuming the position.”

I’ve also been experiencing wheezing, congestion and the frightening daily (multiple times a day) coughing up of blood. This has been going on for maybe a couple of months now, and sometimes, it impacts my sleep. I’ve seen a pulmonary specialist, who referred me for a bronchoscopy. Knowing I was going to have a tube snaked down my nostril admittedly made me very nervous, but the procedure wasn’t bad at all. Fasting for 19 hours (no food OR water)…NOW that was tough! I think I was amazingly patient when my procedure was delayed an additional 2 hours, though I was less than happy when I realized that somehow, my doctor didn’t seem to have been informed that I was awaiting the bronchoscopy in the hospital’s Imaging Unit. Nothing abnormal was viewed during the procedure, which was good news, except we were still left with the mysterious bleeding.

My oncologist has eased my mind with a reasonable (but too involved for this blog) explanation of what might be causing the bleeding, basically having to do with scar tissue from the cancer site not acting properly to process air flow. In the meantime, I am back on steroid pills to relieve the inflammation.

I have scans after every 2 treatments, and in about 2 ½ weeks, I’ll be having my 3rd scan since treatment started. Although my first scan showed that my disease had simply held steady, my 2nd scan showed improvement. Of the 3 lesions previously seen, one has disappeared, and the other 2 were deemed to be smaller. I didn’t feel compelled to rush out with the “good news,” although a few folks with whom I shared this information were relieved to the point of tears. My personal response was tempered by the knowledge that the first scan indicated that the margins of the lesions were hard to determine, due to an accumulation of fluid. I had to ask myself how they could tell the lesions were smaller in the 2nd scan, when they couldn’t accurately measure them before. I’m not being negative, just cautious.

Still, the 2nd scan DID show less metabolic activity, which IS a good sign…AND (drum roll)…I have finally been able to wear a real bra, which I hadn’t been able to do since November. Now THAT is cause for celebration. The fluid build-up from cancer made this impossible to do comfortably for more than an hour.

All in all, I’m holding strong and steady, sleeping when I need to, and maintaining my weight and positive spirit. I am able to make a little time occasionally for creative pursuits (more on that later) and gardening.

This past weekend I felt well enough to put on my gorgeous hair and attend the wedding of a long-time friend, though I did have to leave a little earlier than anticipated when my body decided to have a disagreement with me. It got its way when it sent me home to “assume the position.” (I'll pass on posting a pic of that!)

Roller-Coaster

Hmmm…the Roller Coaster that is Cancer. After chug-chugging my way, somewhat merrily, up the rail to write my last chipper blog, I found myself plunging dismally down the other side. Lack of good sleep due to side effects and repeatedly disruptive neighborhood gatherings, along with cumulative discouragement conspired to knock my physical and spiritual knees out from under me.

It’s more comfortable to write about this in retrospect. While it’s one thing to display my blithe and sunny side, the dark days cause me to seek more private means of asylum. However, part of my reason for blogging my experience is to illuminate a life-situation that many of my loved ones have not experienced, and to hopefully help anyone who might stand to gain from the sharing of this. It’s not fair or right for me to pretend that wearing the “Linda Miss Sunshine” crown is something I’m able to do all the time!

So, I’ll indulge in a bit of whining, but stick with me…I’ll end on a positive note, I promise!

After months of having to sleep in the recliner due to pain and pressure that built up during the night while horizontal, I seemed to finally get that behind me. I was able to give up the pain meds which had been part of my life for months! My celebration was short-lived as I increasingly found myself wheezing when I lay down…back to the recliner. Seems one of the side effects of my chemo (Taxotere) is “pleural effusion”…a build up of fluid in the pleural space…which is what sent me to back to the doc for re-diagnosis this 2nd time around. So, I headed back to Scripps Hospital for my 4th thoracentesis, a procedure during which fluid is removed from the pleural space (via a needle in my back, not my favorite thing.) I have another Taxotere treatment, then another scan, but I’m considering switching meds after that.

Oh, yeah…the scans. How did I forget to mention THAT bump in the road? The plan is to have 2 chemo treatments, then a scan to measure “progress.” Well, the results of my first scan after 2 treatments indicated my disease is “stable.” While my 2 oncologists seemed to think that is good news, I have to admit I’m not thrilled at the prospect of staying on chemo just to keep my disease stable. I shared this with one oncologist, who says that the hope is that initial stability will be followed, on the next scan, with disease regression. I’ve got my fingers crossed.

So, at least the thoracentesis has enabled me to enjoy the simple pleasure of being able to sleep, ALL NIGHT, in my bed.

Well, that is, only as long as neighbors aren’t hosting 2 nights of large gatherings which went on into the wee hours of the morning. (Only a few days prior, the guests of one of the residents had to be reminded that although they were in party mode, there were those of us sleeping just a few feet away.) The downside of living in a rural setting is that you get used to quiet. Usually, the fact that our bedroom faces the street is not an issue…I mean over the usual course of the night, only 4 or 5 cars MAX might head down our dead-end street between 9 PM and 5 AM. So when inebriated party attendees leave at 11:30, and 12:15, and 1:45 and 2:10 and 2:50 and 3:30 and 4:15, guess who’s waking up as they forget to turn the vocal volume down on their conversations? This happened 2 nights in a row, on the same nights that I had chemo followed by the thoracentesis. I mean, I understand that there was a death in the family, but where am I supposed to sleep? Back to the damn recliner, aargghhh!

Thankfully, for now, the parties are over. The neighbor understands I’m not just being bitchy, I have a “medical condition” that means I’m SICK! I’m better rested. I’m making a point to start walking a bit, as I’ve lost much stamina from not being active enough. I’m focusing on eating to regain a few lost pounds.
The anticipation regarding Mother’s Day was more bitter than sweet. My husband and I celebrated with his mother and family on Saturday, but with my daughters and granddaughters in Hawaii, and my Mom gone, I admit to being a little melancholy about Mother’s Day. (Hubby headed out of town in the AM for a well deserved short get-away. We did not have children together, so I hold NO expectations there!) I DID get more than the usual number of calls and text messages, and enjoyed attending a lovely craft show with a friend. I treated myself to my favorite meal at Hernandez Hideaway, then soaked in a hot tub with a book before working on an art journaling project. So I made the best of my day, and re-earned my right to wear the “Linda Miss Sunshine” crown.

I REMEMBER (what I like about cancer)

It probably seems peculiar to consider what is there to like about cancer. I think that “THE C-WORD” gets a bad rap. For one thing: (stating the obvious) NONE of us is getting out of this life alive, and I think there are MANY worse ways to go. I’d choose cancer over sudden death by any means or a long painful downward spiral of physical function. Permanent loss of mental and/or physical function from stroke or aneurysm? NO thank you!

I’ve never included my name on the list of those who’d like to simply to die in my sleep. (I think the presumption of those who DO want to go that way is that they’ll get to live a “LONG” life before taking that long last nap. Obviously we don’t have a whole lot of choice in that matter.)

Speaking from experience, sudden death is horrifically painful for those left behind. Both the survivors and the departed are deprived of the ability to easily tie up loose ends.

But, I digress, because my point in appreciating my cancer is focusing on LIFE. I think that the fear associated with cancer has to do with the focus on impending death. The cancer diagnosis makes it uncomfortably more difficult for many to ignore their mortality and impermanence.

It seems much easier to pretend we aren’t going to die, to assume that we’ll live to “a ripe old age.” So, I’ll say it: I’m going to die, and so are you. And just because I’ve got cancer doesn’t mean I’m going to go before you.

Last year, during my first rounds of treatment for lung cancer, I had no problem finding much to celebrate and be grateful for. In all fairness, I felt I wasn’t really challenged. I was off work, on disability, without any big financial worries, and I tolerated my treatment well. No nausea, hair that only thinned. The worst side effect I experienced was occasional but profound fatigue. This meant that I’d sometimes spend 3-5 days in my pajamas, doing not much more than moving from my bed to the recliner. Kinda sounds like a vacation, huh?

This year, I’m finding myself dealing with a few new side effects, including pain, which has not only disrupted my sleep, but necessitated prescription pain meds over the course of months. I’ve also lost my hair, or at least most of it. Keeping my spirits up HAS been a little more difficult this time, but I am coming around.

As long as I can be comfortable, and am blessed (as I know I am) to not have to struggle financially, then this ISN’T so bad.

So, here’s at least part of the list, now that I’m beginning to remember what I like about my cancer:

I don’t have to wake to an alarm clock 5 days a week.
My friends bring me meals.
I can nap every day.
Friends and loved ones make sure to say “I love you” frequently.
If pain keeps me up for a few hours in the middle of the night, I can watch a movie and knit until the pain meds kick in, and just sleep in a little longer in the AM.
I’m expected to be grumpy once in a while.
I have the time to meditate, pray and generally focus on my health.
I gain a couple of hours every day from not having to “dress professionally”, prepare lunches, and drive to and from work.
I can take more time to stay connected with loved ones.
I cry more easily.
When I have the energy, I have the time to take walks or putter in the garden with my husband.
I am considered to have more wisdom because of what I am going through.
I am more aware of the simple beauty of life.

Hair: Down to here, down to there, down to where it falls by itself....

After trying out a blog site a week or so ago, I decided to move here, where my friends can post comments.

Since my first post on April 2, I’ve lost almost all my hair. Although I had extensive treatment last year (from January—September), including surgery, chemo, combined chemo/radiation, and MORE chemo, my hair only thinned the first time. It was noticeable when I was out in the sunshine, but overall, I looked healthy through my treatment…most folks NEVER guessed I was in treatment for cancer.

Funny…’tho I’d been told that 95% of folks on this year’s chemo drug (Taxotere) lose their hair, I guess I’d let myself feel rather cocky from skating through the treatment so easily the year before. Last year’s chemo cocktail was supposed to be a butt-kicker, but that wasn’t my overall experience. I’m BIG on botanicals and supplements, and give much credit to them for my ability to tolerate the treatment. I guess I thought I’d unearthed the collective “silver bullet,” but that remains to be seen.

So, I imagine you’d think I wouldn’t feel so blind-sided when I found wads of hair in my hands during my shower on the Friday before Easter. That was NOT the case.

My initial anticipated discomfort with hair loss had to do more with my loss of privacy than with vanity. I’ve been very open about my cancer, but wanted that openness to come on my own terms…I didn’t necessarily want to announce to the world-at-large “I’M IN TREATMENT FOR CANCER!” I’m surprised to find that after only a week, I’m pretty comfortable exposing my fluffy head in public, even around strangers.

However, for those times when I want to look “normal”, I did purchase the beautiful wig I set my sights on last year. It still has to be fitted, so, in the meantime, I’m wearing hats when I don’t want to scare small children. I’m finding I’m having more fun with that than I had expected. Around the house, when it’s warm, I’m going hatless. I’m loving my husband’s response…he seems to think it’s pretty adorable, and kisses or caresses my head quite frequently.

For now, I’ll close, and start my day, which means, in part, downloading a picture or two of my exposed head before helping my hubby garden.

Lung Cancer and other goodies

Ok, Ok, Mary Jo…I’m doing it, I’m blogging.
I’m letting go of all the “who’s going to read this”

I am the face of lung cancer. The current picture was taken March 13, 4 days before starting my 2nd go-around of treatment for adenocarcinoma, or non-small-cell lung cancer. Since then, I've lost almost all of my hair...I'll try to post a new pic shortly.

I was previously diagnosed just before my 53rd birthday in December of 2008. I was Little Miss Sunshine the first time around, and now find myself balking about whether I want to or can keep myself in that box, at least as constantly.

I’ve got such a good support group of friends. I guess part of me wonders how letting myself whine more will impact my friendships. I know…it’s easier to be around when someone isn’t darkly contemplative, or just plain bemoaning the obvious gradual loss of their hair. And I know I probably sound grumpy when I respond “please don’t suggest that I just be upbeat & cheerful.” If you know me, you’d have a hard time remembering me being anything other than that all last year during Round One.

I know, it’s hard to know what to say, but sometimes I’m not wanting advice.
I’m just wanting to be heard, and yes, maybe even babied.

Agree with me, please, so that I can move on. Put your emotional arms around me and say "Awww...
Sometimes, it DOES suck!”
OK, I feel better now.

Linda Miss Sunshine