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!)

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