Blame Garry!

One of my good buddies, Garry, stoked my ego yesterday by telling me I didn’t post to my blog often enough. The rest of you needn’t worry, I told him that, as honored as I am by his opinion, I don’t intend to bore the rest of you with more frequent blathering. (More on Garry & his lovely wife, later.)

But, as timing would have it, it’s time for a health/treatment update. And, since I simply can NOT stand dry and droll cancer-talk, I’ll close by sharing some SWEET news and products of my creative endeavors. (The one above gives you an idea.)

The six months of major indigestion I endured since December wound down in June after discontinuation of 2 of the chemo meds, those that I received through my port.

After 2 months of treatment by Tarceva pill only, I was due for my PET scan, which I underwent this past Tuesday. I’ve been taking the smallest dose possible, 25 mg. of Tarceva, as I’ve struggled to combat side effects of medications.

Unfortunately, at about the same time that the indigestion ended, I began experiencing more pain, mostly in my right back and side. I began taking Extra-strength Tylenol during my Hawaii visit, but by the time I returned home toward the end of June, I was concerned about the frequency with which I had to treat the pain. Additionally, I began experiencing nausea in the morning. Ibuprofen controls pain for me better than acetaminophen, but I must REALLY watch my intake, because it can induce or increase bleeding, which has already been an issue with the fluid I’m draining via my catheter. (Did I put that delicately enough?)

After a few weeks on Tylenol and occasional Ibuprofen, I reached a day when neither the nausea nor pain would respond to Tylenol or Ibuprofen. As noon came and went, with me unable to eat, I reluctantly broke out my bottle of Vicodin. Within an hour, both pain and nausea were gone, and I was able to eat my breakfast, at around 1:30 PM. I somewhat reluctantly added daily Vicodin to the med regimen. After about a week, I made appointments with both my oncologist and pulmonary specialist.

In the meantime--I began experiencing a PROFOUND lack of appetite. I’d manage to eat breakfast, but had to force myself to eat lunch or dinner, usually not both. I’d serve myself the smallest of portions, and still only be able to consume ½ of that.

My oncologist assured me that I was medicating myself appropriately to manage my pain until I was able to get in for my scheduled PET scan. We didn’t really discuss, at that point, what to do about my appetite. We had no idea as to whether the pain was related to the cancer or possible scar tissue, especially in the area of my drainage catheter. I had him examine the increasing lumps and bumps developing under the skin by my ribs on the right side. He thought they might be either scar tissue or increased cancer growth.

My pulmonary doc reviewed the Xray he ordered, and felt that there didn’t seem to be anything out of the ordinary.

It wasn’t until about a week ago (a week before my scan) that the light bulb finally went on regarding the loss of appetite. I awoke feeling less pain than usual, and skipped my morning dose of Vicodin. That afternoon, I noticed an increase in my appetite. An internet search confirmed that Vicodin can interfere with appetite. Since then, I’ve tried cutting the doses in half, but I have struggled to find that happy medium between pain management and appetite.

Teaser for creative update at end:

Fast forward to yesterday’s follow-up to my PET scan. The increase in pain had me expecting very bad news about my health status. My weigh-in didn’t help, as I found I had dropped under 100 pounds…98, meaning I’ve lost 19 pounds since diagnosis.

The PET scan revealed very mild disease progression. The Tarceva, even at the lowest dose, is working. So the plan is to gradually increase the dose, as my body allows, to hopefully let the Tarceva do its thing. The progression is in the area where I’ve had increased pain.

The more immediate issue was to find a remedy for the loss of appetite. Rather than trying to find a new method of pain control, my oncologist suggested an aid to stimulate appetite. He prescribed Marinol, a cannabis derivative. Of course, I asked my doc about potential side effects, and he said some dancing in the streets was reported. I clarified that I was only interested in ADVERSE side effects. Another option would have been some sort of steroid, but the marinol seems to be the most natural option.

Boy, am I pleased with it so far! After filling the Rx, we returned home where I took my first dose as I was preparing lunch. I was thrilled to be hungry enough for a second serving! I had similar good results with my evening dose, not only finishing my dinner, but having room for a Vanilla Ice Cream Drumstick. NOW, I think we are on to something.

While I celebrated my double-serving of lunch, I reviewed the information sheet provided with my Rx. Hmmm….Potential side effects include red eyes, dry mouth, feeling “high”, an exaggerated sense of well-being. Well, I could certainly use a sense of well-being, as I’ve been wallowing in discouragement with increasing frequency these days. My first dose did seem to make me feel pretty darned good—in fact, while I THOUGHT I was ready for my afternoon nap, I found myself relaxed and happy, but NOT tired!! It appears that these side effects diminish as the body adjusts to the dosage…dang!! My night dose did not seem to provide the same sensations, but I’m elated to see my appetite return!

On other fronts: I got some VERY HAPPY news a little over a week ago—My older daughter and her family of 5 (total, including her!) are moving back to San Diego County on August 25! My son-in-law has found work here, which will enable them to establish residency. He’d like to study diesel mechanics at Palomar College, but must have established residency for at least a year to avoid paying non-residence fees. So, I’ll have my grandkids an hour’s drive away, instead of across an ocean!

I’ve been enjoying (immensely!) a 5-week online class on art journaling given by Pam Carriker. The images posted today are all products of that class. I’ve completed 2 pages so far. My favorite part of this process is painting. Although these pages are painted with acrylics, the use of a baby wipe to blend creates a washed look, similar to a watercolor. I’m also enjoying experimenting with new tools including a woodless graphite pencil, glazing medium, and watercolor pencils. I can’t wait to test the new techniques on a larger surface. OK, Lindy…maybe I’ll have some art for the school sooner rather than later!

Oh, and with that message to another friend, I’m reminded that I want to share the website for my friend Garry, who encourages me to blog more. Garry’s lovely wife Cherrie is also his partner with their Glass Ranch Studio. Their home studio grounds encompass their hillside garden retreat, where they have a gallery and glass blowing structure. They hold semi-annual art shows, as noted on their site. Their shows are an awesome opportunity to stroll their grounds, strewn with artistically placed glass “discards” and hung with a lovely assortment of garden art. If you find you’re inspired by Cherrie’s glass jewelry, you can buy a piece or two AND/OR sign up to take one of her classes.
Check out their website
…and then go do some creatin’ of your own!

Short and simple: Art, animals, and answers

Can I rise to the challenge of keeping this short and simple? Probably not, but I’ll try.

I took a wee bit of time this week to finish this art project. There’s not much to the technique, so I’ll fancy it up and call it a color study. It took some time to grow on me, but I’m kinda, sorta mostly satisfied with it…I’m positive, I think. It’s mostly acrylics, with pens (gel, metallic & Pitt Brush Pens), and papers.
I’ve got a few other creative projects on the back burners which I’ve been playing with---I mean educating myself about---digital scrapbooking and Photoshop, thanks to my dear digital friend Electra! More to come.

Since we don’t have pets, I stroke my animal instincts with the local wildlife. We have all kinds of birds in the area (thank you Lake Hodges), which we love, except when they eat our lizards. I never was afraid of reptiles as a girl, which is fortunate, since I’m now married to a herpetologist. Maybe I’m taking that too much too heart? Anyone got a tiny collar?

On the medical front: I’ve made my decision about the Tarceva. This was probably THE toughest decision I’ve had to make in the 2 & ½ years I’ve been in treatment…and I STILL wasn’t certain when I talked to my oncologist at 6 PM last night. I was leaning more toward staying off the Tarceva; it has been heavenly to be able to eat what I want with less concern of side effects…and not listen to that damn-ding-dong alarm all day telling me when to stick something in my mouth. However, when the doc pointed out the logic behind the three-fold chemo attack, I decided to continue on. The thinking is that if one chemo only “kills” 99 out of 100 cancer cells, with one resistant cell behind…that’s all it takes for the cancer to come back. A 3-pronged attack gives less opportunity for a resistant cell to slip through…each chemo works differently, and hopefully NOTHING slips through the triple whammy.

I was happy to hear that his plan is to have me start out at 25 mg. EVERY OTHER DAY, as opposed to the what I thought would be 25 mg./day. (I was previously taking 50 mg./day.) Today is the first day; I’m crossing my fingers!

I’d better get…much to do, but at least dishwashing isn't on today's agenda. Hubby and I are celebrating our 3rd anniversary tonight and will slip out for some sushi before returning home to watch a video. Love those simple pleasures.

I have to share a moment of sweet marital communication…direct from our bed. We had some pillow talk about “Tom Swifties.” This was the result of listening to a podcast of “A Way with Words” earlier in the day. Tom Swifties, are adverbial puns, that make most people groan; they make me giggle. An example would be, “’We’re out of toothpaste,’ Tom said, crestfallen.”

At day's end, we couldn’t quite recall what the puns were called, even after a bit of discussion. You know how things come to you, unbidden, in the middle of the night? Fortunately, just as the answer arrived, hubby returned from a trip to the loo. As he tucked himself back in he heard me murmur: “Tom Swifties.” No explanation was required for him to utter his 2-word agreement...and, so, with 4 words uttered in the middle of the night, we completed a conversation started hours before. See what simple pleasures you singles miss out on?

If you’d like to torture others with Tom Swifties, you’ll find more at Thinks.com.

It's NOT hard to find something in life to smile at.

Decisions…decisions…

Time to tap out a few notes, since friends are writing to ask if I’m OK. Hey, I’m just trying to be a good girl, stay on track, keep my life in balance and stay active, instead of unfolding myself from my chair after I discover that 4 hours have passed while I am web-wandering.

OK, I’ll let myself indulge periodically, as with the Photoshop lessons I’ve been toying with, but that’s really about education, right? Don't I look more scholarly?

The quick answer to the question of how I am is “Fine,” but it’s been a long dang year, this one. To call this daily pain & distress that I’ve been experiencing for 4 months INDIGESTION, just doesn’t feel accurate. It’s frustrating to have hours eaten up by The Daily Dyspepsia as I try to find comfort in the recliner, especially since I’ve given up foods I love (and which I know are good for me) to try and maintain some sense of comfort.

Try to imagine eating like this for 4 months: NO onions, garlic, tomatoes, citrus, caffeine (including green tea) or bananas. That means NO Mexican or Italian food, and where do you get soup that isn’t made with onions and/or garlic? (Who would want to eat THAT?) Potlucks are no fun, and it’s pretty much impossible to meet anyone out for meals or eat at their homes. It might be more worth it, if this eliminated my symptoms, but that is not the case.

At my doctor’s recommendation, I’ve tried numerous treatments and prescriptions to combat the pain, which has only gotten worse, AND caused me to skip too many meals, loosing additional weight. The size 2 jeans I had to buy a few months back are now baggy. None of the 3 meds I’ve been taking can be taken together, and they are supposed to be taken an hour before and 2 hours after meals, so I’ve set up spreadsheets and timers beginning at 6 am to tell me when to take meds and when it’s ok to eat.

The culprit for this issue is evidently the Tarceva pill I take…one of 3 chemo treatments I’m on now. I get the other 2 meds via my port, weekly.

After reading about the side effects from Tarceva, I was concerned, but my doc felt combining chemos was the best approach, even tho’ it has meant fighting a losing battle with my insurance company. This combination treatment is NOT FDA approved…in fact: published data states that Tarceva should NOT be combined with other meds, but my doc says that’s based on OLD studies. After 4 appeals, my insurance company’s FINAL answer to covering this combination treatment is “NO.” However, we have managed to get support from the pharmaceutical companies, and so I can continue taking (enduring?) this treatment.

I know you’all love me, but I ask that you not to join the gripe-group ready to take aim at the insurance company. My personal feeling is that our culture has come to feel that insurance companies should pay for any and all treatment, even if there is insufficient evidence to prove its effectiveness without doubt. YES…I got a scan that showed that SOMETHING is going right…but I have no way of knowing whether it’s one of the meds, 2 of them, or all 3. I’ve told my friends that I want to trust that what should happen, will, and if I need to discontinue some part of this treatment, it’s because that’s how it’s supposed to happen.

What I’ve found is that this combination has caused me increasing pain and the loss of valuable weight and stamina.

Even worse: I discovered this week that patients who are on the combination of Tarceva and a “taxane-based” chemo (which I am) are at increased risk for gastrointestinal perforation…including fatalities.” (Emphasis mine.) I already knew that there was a chance of gastrointestinal perforation with Tarceva use, but had somehow never stumbled on the issue of elevated risk for this combination therapy…and my oncologist had never mentioned it.

I discovered this after my husband questioned whether I could be getting an ulcer. I had been awakened by pain at 2:00 AM, and managed to get only minor relief by the morning. Dinner and breakfast portions were tiny, as I could not comfortably eat.

I called my oncologist, and the upshot is that I am taking a break from the Tarceva. I thought it would take me a week or 2 to get my gut to settle down, but within 2 days, I’d seen substantial improvement. Today is Monday…I took my last Tarceva pill last Wednesday…and last night I ate tacos (with salsa and my garlic-laced Spanish Rice.) I had more Mexican food for breakfast. Heavenly! Oh, and I’ve been able to cut back on the meds I’ve been taking for stomach upset. I hadn’t realized just how stressful it had been to have the timer going off all day to tell me when to stick something in my mouth, until I didn’t have to do that!!

But, now, I need to make a serious decision. The doc wants to talk after one week off the Tarceva to see whether to go back on it at a reduced dose (25 mg. instead of 50 mg. which I’ve been taking.) My original dose was 150 mg., but we’ve had to reduce the dose due to side effects, and it seems that STILL hasn’t been enough. I’m confused, and have no idea as to the best plan of attack.

I’m scared to go back on the Tarceva at all…a gastrointestinal perforation normally comes on suddenly…dang…I don’t want the chemo to kill me! But my doctor thinks this might be the best shot at getting the cancer. Since it’s a non-standard treatment, I’m not finding much in the way of data to help in the decision-making process.

I don’t want to be driven by impatience at wanting to get back to eating normal food. It’s not just childish selfishness that causes me to want to stamp my feet when I want to eat what others are eating, but there’s a bit of that there. but then again: Is my digestive tract trying to warn me?

So send out some “good decision” vibes…I’ll need them!

I don’t want to make this too long, so I’ll close with a few images. One thing my cancer has given me is time to join hands with my muse. I’ve previously been too impatient to want to practice sketching…I want to be good at it without trying. You must wonder what kind of example I set for my daughters…

So, I’m trying, and still learning…and am led to believe that practice might NOT be so painful, after all.

Cancer and Creativity

Normally, I follow a possibly abnormal self-imposed rule to make my posts EITHER about creative pursuits OR about cancer, and that WAS my intent. I’ve been FIRED UP creatively lately, though I’ve not had enough to time to indulge. I did however manage to finish a couple of projects last month, and it was my intent to share those projects, but dang it, I had a PET scan in the middle of trying to complete my blog. I know my friends will lovingly hound me if I don’t give a report…so here goes:

After 3 months of treatment (described in my January 14 post), I had my first PET scan, after which, I received good news! There was decreased size and activity in the cancerous nodules, as well as in nodules which had appeared in my left lung (a new site, as prior activity had been on the right.) The new nodules in my left lung (over 20, at last count) had previously been considered non-cancerous, but the fact that they responded to the chemo indicates they were either cancerous or pre-cancerous. The report also indicates that there is improvement in of the hydropneumothorax…which is a mixture of fluid and air in the pleura (the lining around my right lung.) I still have the chest catheter in place, but am crossing my fingers that continued improvement will mean that this can be yanked out one day soon!

Unfortunately, I am in a new battle…with my insurance company. The 3-fold chemo treatment is non-standard. One of the meds alone is standard, but combining the daily chemo pill I take with the other 2 chemos I get weekly is non-standard…not FDA approved. Well, the FDA approved treatment did NOT work for me, and this IS working. So, although coverage for this treatment has been denied twice, the last denial having been deemed “final”, the new development of measurable improvement means we can re-appeal. Send out those good vibes and prayers and hope that we prevail!

OK…on to the FUN stuff!

Seems my life is proving my theory that time is like a woman’s purse…the more time (or the bigger the purse), the more we’ll find to fill it up. It certainly seems like it should be an easy enough thing to do to find/make time to blog, but it seldom seems to work out that way.

There’s got to be a way to make the time…

My most recent solution found me trapped in a chair for 7 & ½ hours at Scripps Hospital, Encinitas, where I received a transfusion. The other option for that day was to drive up to Julian to stay with close friends, in hopes of getting snowed in. Although one might think we’d opt for that, I couldn’t quite convince my husband that reclining in the snow on the side of the road with his arms entangled in snow chains was the best way to spend a Saturday…so we opted for the transfusion. It gave my hemoglobin a boost AND gave me a chance to get most of my blog written up.

As I mentioned, I was able to finally complete a couple of art projects early last month.



“It All Comes from Within” started with a background in my favorite color of yellow, to which I added text from my collection of words and phrases, and a bit of black acrylic paint. The resulting image seemed disjointed, until I layered blue, green and yellow tissue paper swirls to create depth and movement. This is one of my husband’s favorite pieces of mine, so far. I really like working with tissue paper, and am starting to collect probably WAY more than I need.

Sometimes I’ll work, re-work and overwork a piece to get it to where it feels done (or I’m ready to give it up), which was NOT the case with “Fractured Forrest, Winter.”



It was probably one of the simplest pieces I’ve created. You know how hard it is to throw out those pretty images from calendars? That’s what started this page, as I cut into strips a serene winter scene. I laid on a little paint, winter-based text, bird image from a discarded book, and the yellow tissue moons, and called it “done.”

In the meantime, I’ve finally put my new sewing machine to good use. Until last summer, I used a Signature sewing machine, one given to me back in ’73. My little office/creative space doesn’t really have sufficient room to keep my sewing machine set up, and I swear that old machine gained weight with the passing years…it would have been easier to pick up my car, and I’d generally have to ask for help to get it (the sewing machine, not the car) out of the closet. Last summer, I saw a Brother sewing machine at Costco for $100. Light as a flea, lots of stitches I’ll never use, and a few cool features that please me. Time, and a little learning curve kept me from letting it earn its keep, but the fabric stash from my good ‘ole quilting days beckoned, and provided some inspiration to replace the pillows on our bed.

Those who quilt will understand that, in spite of a closet-full of fabrics, I found I didn’t have the right color for the background of the pillow. This sent me marching into the local quilt store (SERIOUSLY) chanting to myself “I’m only buying 1 thing, I’m only buying 1 thing.” A sales clerk with an obvious artistic eye (who started out in mixed media, including metal, before moving into textiles) turned me on to a technique I’d never seen before, called “chenilling.” It basically involves layering 4—8 layers of fabrics, stitching grids on a ½” bias, and then cutting through all but the bottom layer, before washing and drying the piece a couple of times to cause all the cut edges to fray and open...creating a piece with lots of visual movement.

I got started on that piece, but had to set it aside to start up sewing a dress for my nearly 5-year old granddaughter. (I used to sew clothing for my daughters, as well as myself, but haven’t made clothing in YEARS.) Both projects are as yet, “to be continued.”

Looking for a little creative kick? A friend turned me on to a site recently, called StumbleUpon. I set up my profile to tag various interests…they cover a WIDE range from Philosophy, Geneology, Humor, Health, Fashion, Mythology…YOU name it! Every time I go to the page, it makes recommendations about other websites I might be interested in, and I give the recommendation a “thumbs up” or a “thumbs down.”

So, (since I’m not already suffering from enough “informational overload”) I set up my profile to (OF COURSE) include “Art.” Based on this, StumbleUpon made a recommendation for ColourLovers.com. Those who love color will find PLENTY to distract them from things they REALLY should be doing, like paying bills or cleaning the toilet. You’ll not only find lovely palettes AND patterns, but you can copy these patterns for use in your art projects. AND, you can design your own palettes and patterns.

I haven’t experimented with designing patterns, but have used several patterns to create greeting cards. I’ve also created a couple of palettes, and was pleased today to find that someone had created a sweet plaid pattern, which they named “Sherbert Plaid” from my palette, named “Rosy Sherbert.” And, ever-learning creature that I am, I now have discovered that the correct way to spell “sherbert” is “sherbet,” at least according to good ‘ole Spell-Check! (Dictionary.com DOES show it both ways!)

As luck would have it, I DO have time today to get out the paints, papers, colored pencils and other items from my creative stash…so I’ll give you’all a break for now. Go out…and create!

"I found that I could say things with color that I couldn't say in any other way-things that I had no words for." Georgia O'Keefe

Long-delayed Health/Treatment update

Two posts in one week? I KNOW I’m well-past due!
Forgive me friends, for I have sinned; it’s been about 2 ½ months since I delighted you’all with the details of my cancer treatment.

Actually, I did NOT have any chemo for 3 months. Based upon the results of an October Pet Scan, I made the decision to discontinue the prior chemo treatment (Taxotere), which I had been treated with from March through the end of September. While it initially seemed to work on my cancer, over time, that was not the case. The cancer stabilized, but didn’t back down any further, and I now I was dealing with constant fluid build-up (in the pleural space around my lungs pleural effusion), sending me to the hospital, and necessitating the eventual placement of a catheter in my chest.

One option for treatment was to submit cells, which the lab would examine for cell mutations. Not all lung adenocarcinomas (the specific type of lung cancer I have) respond to the same chemos, and over time & treatment, some of the cells can mutate. Doctors are now able to use these “biomarker” or "tumor marker" studies as a diagnostic tool to better predict which chemos will or won’t work on particular cell mutations of specific cancers.

So, some cells were collected at the end of October, via fluid collected/drained from my pleural space. Unfortunately, something went wrong in the processing of the first test, because not enough cancer cells were found in the sample….and we KNEW there was cancer in there! I lost several weeks waiting to get those test results back, and then had to restart that process by submitting more fluid/cells. That was one reason for the delay in restarting my treatment.

I submitted more cells, and waited 3 more weeks for test results.

The biomarker study report listed 4 types of meds which were deemed as “agents associated with clinical benefit.” (We also received a list of those unlikely to provide a positive response.) My oncologist’s recommendation was to combine 3 of the meds most likely to work. He gave us time to consider the options before deciding which approach to take. (Other options included using the drugs separately.) Since there isn’t any current research on the combination of these 3 meds, the decision wasn’t an easy one. The only data available on the combination was done prior to the availability of biomarker studies, meaning that theses chemos were being shot like bullets in the dark…hoping to work on cancers that might not have been responsive to those specific meds. The side effects of one of the meds, Tarceva, also made me nervous. But, in the end, we decided we want to give this our best shot.

So, I started my treatment on 12/17/10. (I did delay a couple of days so I could celebrate my 55th birthday on the 14th.) I now go in for treatment once a week, receiving 2 meds (Carboplatin & Abraxane) via my port. This part of the regimen is administered 3 weeks on then one week off. I received Carboplatin last year, and did get a positive response from it.

The 3rd med I’m receiving is called Tarceva, and I’m taking this via a daily pill. The mechanism of Tarceva is not fully known, but it is thought to work by blocking the activity of a protein which cancer cells need to grow and divide.

I had it easy last year in terms of side effects, so I’ve had to adjust to dealing with them this year. The side effect about which I’d heard the most about, has troubled me less than indigestion. About 1 week after starting the Tarceva, I began experiencing PROFOUND indigestion. This comes on most afternoons, and gives me the sensation that I’ve got a giant balloon in my belly, or that I ate 5 pizzas by myself. I begin belching, 3-6 times a minute…constantly, and am in extreme discomfort. This impacts my ability and desire to eat, and because I’ve now skipped or cut short many dinners (including Christmas….now THAT’S not fair!), I’m battling weight loss. (It’s compounded by another digestive issue, one which I’ve now begun to tread with Immodium.)

I can get comfortable if I stretch out on my back in a recliner…but losing hours of most afternoons in this position is losing its appeal…even if I do get to watch more Oprah. I’ve found that eating a very bland diet, avoiding onions, garlic, bananas, raw fruits and veggies, caffeine (NO green tea...dang, that’s anti-carcinogenic) and acidic foods like tomatoes and citrus, helps, but only somewhat. I also make certain I drink at least 2 quarts of water daily. One of my favorite past-times, eating, has lost a lot of pleasure for me. Have you ever tried making a tasty soup without onions or garlic?? It doesn’t help that I must minimize eating of dairy and wheat (no macaroni and cheese!) due to food allergies. (Yes I can eat rice noodles, but I’ve yet to find a yummy mac & cheese w/rice noodles and pretend cheese!) I can eat white rice and applesauce…oh, boy! I tried my usual digestive aid, Papaya tablets, but that didn’t work. After talking to my oncologist, I’ve tried GasX and Maalox, with no improvement.

The side effect I’d heard the most about, skin rash, is not quite as troubling, but getting pretty uncomfortable. I was worried because I’d heard some patients were covered head-to-toe in an itchy rash, and found themselves waking themselves up, scratching and bleeding. My rash has been confined to my face and exhibits as a combination of what looks like acne, and extreme dry skin. The dry skin has actually become red, painful and scaly in a few places, including areas in the creases and corners of my eyes. I’ve been given a prescription for the acne-like rash (mainly to avoid skin infection), and have attempted treating the dryness with Evening Primrose and Vitamin E oils, as well as several good moisturizers. I’m now trying a cream moisturizer, called Udderly Smooth, recommended by the nurse.

I suffer from sudden and severe issues of eyes burning and watering…I’m not always able to determine an immediate cause, but it seems my eyes are more sensitive, just like my digestive tract and my skin. Since permanent eye damage is a potential side effect, I’ve scheduled with an opthamologist.

Oh, yeah…and after managing to grow out a pretty cute thick faux-hawk during non-chemo…I’m re-losing my hair. Oh, well. (This was me a few weeks before I started to re-lose my hair...it got even thicker after this!)


Several nights ago, while dealing with another sleep-deprived night due to indigestion (following a day when I only ate one meal), I decided to ask the doctor for a dosage reduction. Since this post has already gone on long enough, I’ll save some details for later, about why patients want to make CERTAIN they familiarize themselves with the drugs they are taking, what dosages they are available in, and what other meds they interact with! Suffice to say, at this point, that the doctor agreed to an immediate dosage reduction by alternating days on and off my Tarceva pill, until the new reduced Rx arrives via mail order in the next few days. My first day off, day before yesterday, showed promise. My indigestion was MUCH reduced, and I ate 3 full meals 2 days in a row, with improved digestion yesterday, when I had to take the Tarceva (at the higher dose…haven’t yet received the reduced dose.) I even managed to add a small amount of garlic to one meal, and have some fresh fruit with minimal side effects! I’ve been given a prescription for Zantac, which I’ve started taking, until the lower-dose Tarceva arrives.

I hope those who might want an answer to the question of how long I will be in treatment have stuck with me this far, as this is a question I am asked repeatedly. At this point, the plan is to continue with the treatments for 2 or 3 rounds (I’ve yet to confirm) of 3 weeks on 1 week off, before having a scan to see how well the chemo is working. After that, we will continue with the chemo until either there is no sign of cancer, or I must discontinue to due side effects. If I must discontinue, we cross that bridge when we come to it…seeing what other options might be available at that point. I know of some folks who stay on Tarceva for 3 years.

Oh, and back in October, I finally had to get the PleureX catheter installed in my chest. Fluids were building up (called pleural effusion) way too quickly, so I can now drain myself (with MUCH APPRECIATED help from my husband for 1 necessary step.) I drain the catheter every 2-4 days, as symptoms command, usually draining about 400 milliliters. There is some discomfort associated with it, but I can lesson that my draining slowly, and stopping as soon as the pain starts. The pain evidently is related to a change in pressure in my chest as the fluid is removed. I am hopeful that the chemo will work well enough to stop the pleural effusion, allowing me to have the catheter removed so that I can soak in a tub or hot tub, or swim and snorkel when I visit my family in Hawaii.

In the meantime, it’s time to put some meat on these bones, and maybe indulge in a little creativity…these posts are getting WAY TO serious and boring for me!

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.

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.)

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!

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