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!

Where have I been? (Pay-for-delay)

No…I’m not providing a long-overdue update on my treatment. I’ll get around to that one of these days. I’ve yet to share some wonderful...even spiritual...experiences from my December birthday, as well as the news about grandchild number 3, due in June.

What’s finally prompting me to write is my reaction to reading a small piece on page 2 of yesterday’s Union Tribune (San Diego.)

We all have our opinions of what is wrong with our health-care system, and I’ve tended to practice old-fashioned caution about voicing my political opinion, lest I offend friends. And though I KNOW it’s too easy to point the finger at pharmaceutical companies, I’m still shaking my head after reading yesterday’s article, which covered the practice of “pay-for-delay.”

“Pay-for-delay” is a practice whereby a manufacturer of name-brand drugs pays competing manufacturers to withhold marketing of generic equivalent meds, thereby allowing the manufacturer of the name-brand drug to continue to charge name-brand prices past the expiration of the patent. And the company who might otherwise be selling the generic med is able to make millions, for a drug they don't even sell...all while avoiding manufacturing and marketing costs.

Any of you ever taken Cipro? Well, evidently the Supreme Court is scheduled to hear arguments next week against Bayer Corp, the manufacturer of Cipro. Bayer is alledged to have paid competitors $400 million to keep generic versions of Cipro off the market. According to a link I found (after searching “patent expiration Cipro”), Bayer’s patent on Cipro expired in December of 2003.

Even if your meds are covered by insurance, keeping the prices of meds artificially inflated by these back-door deals comes out of ALL of our pockets. In fact, according to an on-line article in The Washington Post (7/29/10), the Federal Trade Commission estimates that the practice of pay-for-delay costs consumers over $3 Billion ANNUALLY.

I watch the news…how could I have missed this story before? Are any of you familiar with this practice?? I’m sure hoping we’ll be hearing shortly that this practice has been officially banned.

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!)