Dem Bones

In the past three weeks, I have had two scans, a full-body CT scan and a full-body bone scan. The previous CT scan showed some improvement to "shadowy" tumor areas. However, previous bone scans have not shown any progress -- until now.

Get this, folks: the latest bone scan showed NO NEW areas of metastases; in addition, the report showed a diminishing (!!) of most of the previous bone shadows.

This....is.... great.... news. It means that we are on the right track in treatment protocols.

So.... although the tumor areas have not been completely eliminated, progress has been made. I will be continuing with chemo infusions. For how long? Can't say at this point.

I am tolerating the protocol pretty well. I do get tired and occasionally feel loopy, but am able to continue playing church gigs, singing, and teaching. I have begun experiencing some neuropathy in the left hand. It is possible my naturopath will recommend increasing my intake of L-Glutamine, which is the supplement that helps counteract the effects of hand and foot neuropathy.

Many have wondered how I have been able to tolerate 8+ months of chemo without experiencing extreme side effects. I credit my naturopath M.D., who has helped me manage a heavy course of supplementation to counteract the side effects of chemo. I actually take a supplement to "up" my white- and red-blood cell counts; and another to help lower blood pressure. I take six mega-multi-vitamins daily, vitamin D-3, black currant oil, melatonin, colloidal silver, calcium...... and on and on the list goes. I am even taking THC oil (cannabis oil). And, of course, I still give myself mistletoe injections every other day to bolster my immune system.

Living a relatively normal life -- in my case, this means making music and being with all my musician friends -- has been key for my survival. And, of course, prayers and plenty of good vibes from everyone have made an impact; of that I am certain. Thank you, all, for your support and love.

Onward.

November Update

I'm sorry that my absence from posting has caused concern to some of my blog followers. There has really been very little news to report. I am about to begin Cycle 7 of chemo infusion treatments. So far, have had 18 IV infusions in addition to the oral study drug.

Thankfully, side effects are not bad enough to keep me from teaching piano, playing gigs, and singing. Some tummy upset and general fatigue come and go, but I do my best to slog through those times. Having NO hair -- anywhere!! -- is just plain weird. I was forewarned about the head-hair loss and have adapted with wigs and hats. But it's kind of freaky having no eye lashes, no eyebrows, and no NOSE HAIRS!  I find it rather amusing to pinch my nostrils together and they just stay stuck in that configuration for several seconds. Gotta find humor where we can, ay?

My cough is almost totally under control, thanks to understanding the effects of acid reflux. The voice is not totally recovered, but I am happy to report that I am back to doing some singing.

Next scan is scheduled for November 15. Let's hope it shows positive results.

Looking forward to accompanying my grandson Jacob and his family to see a Penn State hockey game this Friday -- in honor of his 10th birthday!

xoxox to all....

Scan Results

Went in for blood work this a.m. in preparation for another week of chemo. I was anticipating seeing my oncologist in two days to discuss results of last week's scan. But my study coordinator stated that the doc wanted to see me prior to my next chemo treatment, just in case we needed to change the protocol based on scan results. So in the late a.m., I was squeezed into my oncologist's schedule.

The report showed improvement (i.e., reduction in size of tumors) in several areas: breast tissue (original tumor site), lymph, and liver. All of those areas show little, if any, tumor presence. No new growth. There were still anomalies in some areas of the bone.... in scapula (no change from before) and in the lower spine (no change). A new "shadow" appeared on a rib fairly close to the original tumor area. I had felt some soreness there earlier in the summer, which had dissipated. But there now appears to be "activity" there. I had felt that I had bruised that area when doing some gardening a couple of months ago. The doc said that inflammation due to injury often looks the same as cancer activity on a scan; so it is possible that this area might not be cancer at all, but the result of inflammation due to bruising. Let's hope that is the case!

All in all, the news I got today was good. We are sticking with the present chemo protocol, especially since I am tolerating it pretty well. Cancer blood markers were drawn today; I will have results of those on Wednesday when I begin Treatment I of Cycle 6 of chemo.

Onward.

Scanning the Horizon

This will be a quickie post, just to check in.

I am chugging along with treatment and, so far, it's fairly tolerable. Last week marked end of Cycle #4. I have now had 12 infusions of chemo along with oral study drug. I will have results at my next oncology appointment... September 14.

This coming Thursday (September 8), I will have another full-body scan. My last scan (in July) did not really show any improvement, except for some change in right lymph nodes. I am not thrilled with having so many scans, but alas, I am now on this bus and I am not the driver.

So let's try to enjoy the ride!

"What you eat....

....could EAT YOU!"

This is another take on that famous bumper-sticker phrase: "You are what you eat."

Those of you who have been following this blog know that, in addition to the cancer that is trying to get me down, I have been suffering from a chronic cough that has been exacerbated by speaking. The voice has also been adversely affected, preventing me from doing solo vocal work. It's been a real bummer.

But after learning of LPR (laryngopharyngeal reflux) from my friend Carol, who has suffered vocal problems from this condition, I began to more carefully monitor what I was eating and drinking. The results have been dramatic. I have totally cut out coffee, wine, beer and most (but not all) teas from my diet. I have also learned which foods are alkaline and which are acidic; the goal is to "drop acid" (fun pun!). I am also drinking a ton of water and sipping apple cider vinegar mixed with honey and warm water throughout the day. Eating large meals is a no-no, especially close to bedtime.

The result of my dietary changes is that the cough, although not totally gone, is significantly less frequent. I am able to speak for long periods and do some brief snippets of singing with little or no coughing.  I hope that, in time, my cough-ravaged voice will heal. After over a year of suffering with this, the relief I am feeling is monumental!

So.... hey out there.... if you know anyone who has a chronic cough, consider an acidic diet and acid reflux as a source of the problem. I cannot believe I suffered with this for so long and no medical professional seemed to have the answer. I have discovered that there are, indeed, doctors who know about this, but you have to know who those smart ones are.... alas.

Sidebar comment about chemo treatments: I am in the middle of a treatment-free week. I seem to be tolerating everything pretty well, thank goodness. Next Wednesday begins 10th chemo treatment.

Life in the Wig Room

Translation: "the wig room" is the place where chemo patients gather for weekly chemo infusions.

I have now been "in treatment" for almost 10 weeks. The first few weeks were a bit of an adjustment. There was some nausea and stomach upset, and a dizzy, loopy feeling -- almost felt like a constant hangover. After the first round of treatment (3 weeks), I experienced some relief from adverse symptoms with help from my mistletoe doc who changed my supplementation to alleviate side effects. This helped immensely!

The biggest problem I had was with a huge dose of Benadryl given in a pre-chemo cocktail with every infusion. I found that I simply could not tolerate the intense groggy stupor from the Benadryl; then, as it wore off, I experienced a hyper-jittery state that prevented me from having a peaceful night's sleep. So every Wednesday afternoon, I was in a fog-like state and every Wednesday night, I lay awake all night long; hence, Thursday was spent in a state of total sleep deprivation. The Benadryl is given only as a prophylactic drug in case of allergic reaction to the chemo. I finally convinced my doc to reduce the Benadryl dosage.... and then, when even that didn't seem to help much.... to eliminate it completely. It has made a huge difference in my ability to function every Wednesday and Thursday of treatment weeks. I never displayed an allergic reaction to the chemo, thank goodness. So "bye bye Benadryl!"

A follow-up scan was administered on July 13. It showed no advancement of the cancer and possible reduction of a lymph node tumor. Because I am on an additional study drug, scans will be pretty frequent. I found out that the study I am on requires most patients to be in treatment for at least six 3-week cycles -- that's essentially 6 months' time. Some patients are in treatment for a year or more.

I still experience some days of fatigue. But for the most part, I am tolerating the treatment pretty well.
Hair is not totally gone; but after having a buzz cut and now looking like a white-haired chicken, hats and wigs are standard apparel.

I am grateful that I am still able to play a lot of church gigs and teach piano. Making music is key to my survival. Singing is still problematic but progress is being made; will save that story for another posting.

Thanks, as always, to friends who send emails and cards to let me know you are "out there" and thinking of me. It really does matter -- so very much.

"I get by.....

. . . with a little help from my friends."

This post is a thank you note. To my friends. Wonderful, supportive, email-writing, card-sending, well-wishing friends. Three such friends responded to my (previously posted) clarion call for help about the dratted cough that is plaguing me.

My ole college roomie and buddy Carol (Wolf-o), who is a professional vocalist (opera in Pittsburgh), shared some very valuable info about vocal issues she has had; she wondered if perhaps my cough and subsequent voice problems might be related to what she has uncovered about her own problem. Not only did she give me a physician reference, but she shared many links to sites about .... ready? it's long.... laryngopharyngeal reflux (LPR, for short). I could give all the boring details about this, but if you are really interested, just look it up on-line, and you'll find plenty. Bottom line is.... it seems that this condition can often contribute to a chronic cough. Which I have, doggone-it!

Another old pal, Juliann (Jules),  synchronistically as Carol was emailing me, sent along a plethora of links to information about LPR and many other articles and medical sites related to chronic cough. Wow, Jules, you really did a huge search for me!

And then my out-law "sistuh" Peggy messaged to me the name of a good vocal doc right near me in Chevy Chase. Thanks, Pegs!

So thanks to "a little help from my friends," I may be making some headway in the cough department. More to come on this later as progress is made -- hope, hope.

 Another pillar of support deserves a shout out: my singing buddy Cindi. When I knew I had to pick out a wig, I knew who to call for selection advice; Cindi was at the wig store in a heartbeat.
She is a rock of support; best of all, she can see the humor and irony in every dark situation and can bring you around to the lighter side. A couple weekends ago, she treated me to dinner and pulled out a present: an adult coloring book entitled "Hello, My Name is Cancer" (picture a large name tag, like the kind you'd where to a conference). It is absolutely hilarious! If you google the title, you'll find a site that describes the book and shows sample pages. This book will keep me laughing my way through chemo treatments.

So thank you, Beatles, for that wonderful song. And thank you friends. With your help, I can always "get by."

The Buzz

Well, the hair loss thing finally took its toll. While the hair was still long and curly, I cut several strands and have created a "halo," a simple elastic band on which I have sewn several strands. When I wear the band under a hat, the hair "peeks out" just like my old hair did. Quite a fake job!

Meanwhile, as the hair kept coming out in handfuls, I was looking more and more pitiful . . . like a chicken.  Truly. Feathers here, feathers there. Not pretty. So last weekend, son Nick gave me a buzz cut. Once I got over the initial shock of appearing almost bald, I concluded it doesn't look half bad. With a little make-up and some ear-rings, I look almost "old lady hot." SSssssssss!

I face-timed with the grandkids to show them my new look. They were very kind. Didn't laugh. But they did stare a bit bewilderingly. Then I gave them a hat and wig fashion show, with and without the halo.

I am working on the cough problems. Stay tuned on that score. I am seeing light at the end of that tunnel; and nope, this time, I'm pretty sure it's not a train. There are answers out there and I am finding them, thanks to a squadron of knowledgeable friends. Yayyyyy, friends! xoxox

Diane or Elmo?

My chronic cough continues to be an enigma. It is always with me, even when I am not talking. But it becomes significantly worse when I use my speaking voice.

I have begun trying to speak in my head voice (sounding a bit like Minnie Mouse or Elmo); I find that doing this helps immensely to keep from going into coughing fits. When I speak in my normal speaking voice, I sound like PBS's Diane Rehm. When I revert to head voice, I sound like a cartoon character.

Because of these cough and vocal issues, I am asking everyone to please keep up with my progress by checking in periodically to the blog instead of expecting phone updates verbally. If you access the blog on-line (and not in email digest), you should be able to subscribe at the very bottom of the blog to be alerted by email when a new post is up. I know that many simply prefer talking by phone. I find it emotionally painful to be apologizing to so many folks who want to chat with me over the phone; I simply cannot sustain a conversation without exacerbating the cough. So many have said they just want to call me and "hear my voice." That is a sweet thought. But I must remind all well-meaning friends and family that my "voice" is no more.

I would like to find the source of this cough issue. I have been to an ENT. He said everything looked fine. He ordered a sinus scan; it was clear. I have been to a pulmonologist. He is totally perplexed; had no clue what was causing the cough. I have had chest x-rays and scans; all is clear. I have been on steroids, inhalers, and allergy meds; no relief. I take homeopathic and pharma cough meds; some relief, but minor and only temporary. It has been difficult trying to cope with this while dealing with stage-4 cancer. And now that I am on chemo, my coping capabilities are diminished. My oncologist has wondered if there are lymph issues associated with the cancer. But in essence, she is at a loss, as well. If anyone knows of a really competent (!) vocal / bronchial expert, I would appreciate any names. It is quite possible I have done some damage to my vocal cords; might explain why my speaking voice is terrible but my head voice (not as dependent on air passing over cords) is intact, both speaking and singing.

So.... if I do happen to have a conversation with any of you, know that you might hear me do a quick switch from Diane Rehm to Elmo mode. Try not to laugh too hard. And thank you for understanding.

Wiggin' Out

I have begun wearing a wig as I go out and about. I like it. It looks good, or at least everyone tells me so. Losing the hair was a bit freaky at first. Most people just shave the head as soon as the hair starts to fall out. I have continued to collect bits and pieces of hair to make the halo gizmo I plan to construct (this described in previous post). Meanwhile, I also have lots of hats and am enjoying wearing them. As weird as this sounds, I prefer to be a participant in the process of the hair loss; I will sit in the backyard and run my fingers through my hair pulling out handfuls. I prefer not to hide from what is happening.

It's a fascinating process.... this observing of the "killing" off of cells in the body. The hair loss is proof that something awful is happening. It is also proof that something wonderful might be happening: the killing off of the cancer cells. A Tale of Two Cities: it was the best of times, it was the worst of times. Again with the ying and the yang.

Tomorrow I start the second 3-week round of chemo treatment. I have enjoyed having a week off -- accomplishing much and feeling pretty good. Knowing that after three upcoming weeks of hell, there will be a respite will make those three weeks a bit more tolerable, I think.

I hope.

Ying Yang

Good often follows bad. Bad is countered eventually by good.

Every cloud has a silver lining.

There is no joy without sorrow.

Everything is relative.

You've heard all of these. It's the Ying and the Yang. The up and the down. The happy and the sad.

Hop on board the canoe, chuck the oars, and sooner or later the river will carry you to the good, the bad, the ugly, and the beautiful.

A couple of days ago I felt like hell. Today was terrific. No nausea, no dizziness, no fatigue. Since my hair is still exiting the premises, however, I decided to take advantage of my good physical condition to go hat shopping. I headed to Kohl's where, of course, there is ALWAYS a sale going on. I went a little crazy and bought four hats: two straw, one blue canvas and one very floppy lightweight cotton.

That is all. Just thought it would be nice to issue a positive report. Yay.

Sheddin' like a Dawg......

on a hot summer day.

Hair coming out fairly rapidly. I had to play a funeral gig this a.m. Thought about making a debut appearance with new wig, but decided I was presentable enough with short and thinning locks.

This afternoon I had two piano students and, for first time, I really had to fight to maintain the patience to teach. The fatigue is heavy. I ate dinner but had to force it down; am now fighting waves of nausea.

Weird. Yesterday I thought I was feeling ok despite dizziness. Today it's like I'm being hit with a sledgehammer.

I take some consolation in the thought that the same agony I am experiencing is being felt by all of those rogue and nasty cancer cells inside my body. Remember that old Raid commercial? The one where the roaches are running around in terror and yelling "RAID!!"? I sort of enjoy picturing that scene happening inside my body. Only they're yelling, CHEMO!! Run for your life!

Trust me... if those pesky little cancer cells are feeling like I am starting to feel...then maybe this stuff is working. Gotta hope so.

Surviving first Round of Chemo

I have made it now through the first 3-week phase of chemo plus study drug. First two weeks not so bad. But after the third infusion (last Wednesday, June 8), the beast started rearing its ugly head. In addition to the Benadryl stupor and the steroid face swelling, I began to experience extreme dizziness. I think this is what many patients refer to as "chemo brain fog." It is a sense of vertigo, almost feeling drunk or high on something... sort of disconnected and out-of-body; it is at times accompanied by an overwhelming fatigue. I can still function my daily activities, but find that I just need to sit and relax with great frequency. And I do just that.

Yesterday I noticed that hair loss was beginning to occur. Today it was even more dramatic. This was my trigger to give myself a haircut; it is thought that hair loss is less noticeable when the hair is short. As I trimmed, I preserved many longer locks of hair to later create something called a "halo." This is an elastic headband on which is sewn snippets of hair to create the "illusion" of having hair under a hat or cap. Not sure how this will fly, but I am going to give it a try. Meanwhile, have wig - will travel. And I have found a pattern for a crocheted sunhat; am enjoying creating this in a variety of colors.

This coming week marks a break from treatment. So it's 3 weeks on, 1 week off. I am very much looking forward to this 7-day respite.

Thanks, as usual, to so many of you who have sent cards and emails and FB messages of support. It is great to have a squadron of cheerleaders. My friend Mark Rossman wrote this gem: "Stay strong. Stay tough. Be mean. Attitude wins the day." Yup, works for me!

Wig Room, Week 2

I have now completed two rounds of IV chemo and 6 doses of trial drug. After the first round, I felt ok. Any nausea that I felt was quite mild, nothing worse than I had experienced on previous chemo drug.

Today marked Day #3 after second infusion treatment, administered June 1. I can definitely say that I am feeling the effects today. I have been quite dizzy and "loopy" all morning and I am experiencing stomach upset and some nausea. It feels strange to have no appetite and yet to hear my stomach grumbling for food. In spite of feeling bouts of mild nausea and dizziness, I decided to force myself to consume a healthy and substantial lunch. So far, so good. I do have anti-nausea meds and will take them if need be.

So far no loss of hair. But it's still early in the game.

My biggest problem is still a chronic cough, exacerbated by talking and attempting to sing (which I did too much of yesterday at a church gig). By the end of a typical day, I am exhausted from coughing. My oncologist is hopeful that the steroids I am being given in my pre-chemo cocktail infusion might help alleviate the cough; so far, this has not been the case. No one seems to be able to get to the cause of the cough; my doctor wonders if it might have something to do with the cancer (lymph?), but nothing has shown up on scans or x-rays. Meanwhile, I avoid conversations with people, either on the phone or in person -- the coughing is an embarrassing annoyance. And of course, not being able to sing is a huge deficit in my life.

Meanwhile, I try to find joy wherever I can.

 I saw my first goldfinch feeding at a new bird feeder outside my dining room window this afternoon. Beautiful.

I also bought some new "sexy" silver shoes to wear to my niece Jessa's upcoming wedding.

Pretty birds and pretty footwear -- hallmarks of the day.  :-)

Lab Rat in the Wig Room

First, let us define the "wig room." It is that mysterious place where I have seen patients entering and exiting when I am in the oncologist's waiting room. It is where chemotherapy is administered via IV.  It is that place from whence come stories abounding in the horrors of chemo: hair loss, nausea, fatigue, etc. People come and go from the wig room with various forms of head-gear to hide that trademark of chemo: loss of hair.

The Wig Room is a place I have been trying to avoid. But today I joined the ranks of IV chemo users.

How on earth did this happen? I had been on Afinitor since January (see previous post). And although results were not showing much advancement of the cancer, not much was happening in the way of improvement (according to a scan in early April). Also, blood work, although not getting worse, was getting better only in small increments.

My oncologist knows how I feel about full-body chemo; she knows I have been trying to avoid it. I think she was a bit astonished when I was the one expressing an interest in finding something stronger. I recall using that age-old adage, "Doctor, I think it's time to shit or get off the pot. What do you think?"

She then took the lead and offered me three options: 1)chemo in pill form, 2) full-body IV chemo with a once-a-month triple dose, or 3) full-body chemo more spread out in once-a-week-for-3-weeks cycles. I opted for #3. I felt that the pill option would not be potent enough, similar to the Afinitor I had been on. And although the triple-dose IV would mean fewer visits to the Wig Room, the full-body damage would be pretty extreme.

Then the doc sweetened the pot by offering to put me on a new experimental research study. A new chemo drug (in pill form), Alisertib, is being studied to see if it boosts the effects of the IV chemo (Paclitaxel). The study is randomized, with some patients taking only the IV chemo and some taking it in combo with Alisertib. Today I found out that I am one of the study patients who will be taking both chemotherapies. This might mean an increase in side effects; just not sure. But I am very happy to get the opportunity to be taking this added drug; initial studies have found it to be very effective.

Today was Day One in the Wig Room. Prior to the chemo IV, I was given anti-nausea med, steroid, and Benadryl in IV form. Before the pre-chemo cocktail was even finished, I could feel the effects of the Benadryl; I was super sleepy. I have remained pretty groggy all day; really had to rally my brain to teach piano students. But otherwise, I am feeling ok so far. Appetite, although somewhat suppressed, is ok. No puking, no nausea. I am told that the third day more side effects might appear as the anti-nausea and steroid meds where off. We shall see.

So I am now the Lab Rat in the Wig Room. I am trying to approach all of this like a Taoist. Although I am not driving the bus, I am going to do my best to enjoy the ride. Am working on adjusting my thinking.... just trying to approach all of this with a cheerful heart. I believe it was Wayne Dyer who said "Change the way you look at things, and the things you look at change." Now, ain't THAT a little pearl of wisdom?

Coasting

I have not posted to the blog in a long time.... simply because there hasn't been much to report.
I have been taking the chemo drug Afinitor. Side effects are not debilitating. Stomach pain has been alleviated with probiotics (fermented sauerkraut). I have had occasional days of low-grade fever, feeling loopy with accompanying headaches. But over all, I am tolerating the drug pretty well.

The last two visits to the oncologist have shown blood cancer markers to be slightly elevated, which is generally not a good thing. My doctor was not alarmed by this the first time. But after the second elevation, another scan was ordered; this occurred last Wednesday, April 6.

I have not met with the doctor to go over the scan report in detail. But in a brief phone conversation, she said that the scan revealed very little change since the last scan (late December). There has been no improvement (that is, no reduction in cancer); and there is one additional "shadow" found in the upper part of the breast where the cancer originated. The recommendation was that I should just keep taking the Afinitor, with a "wait-and-see" attitude.

So I am coasting. No longer driving the bus. The driver appears to have put the engine into neutral.

I have stopped singing, since the chronic cough I have had for almost a year affects my ability to sustain good vocal quality. No one seems to know what the cough is all about. I have been to an ENT doc, a pulmonologist, taken steroids and inhalers and antibiotics. Even my oncologist, wondering if it was related to the cancer, ordered scans of chest and lungs. Nothing found.

I suppose the fact that the cancer is not overtaking me and spreading like wildfire is a good thing. But it's still there. I try to keep my daily routine as normal as possible. Still teaching piano, still playing church gigs. Living "in the moment" is the best survival tactic.

Drug Purgatory

Better than Drug Hell, ay?

I am still on the Afinitor chemo drug and the Aromasin estrogen blocker, just praying that they have an effect on the cancer. So far, side effects are not debilitating, just mildly annoying: mouth sores (they come and go), suppressed appetite, some stomach cramping.

Meanwhile, I had blood work last week. Thankfully, the cancer markers had not increased; in fact, one of them had diminished slightly. My doc says it is a bit soon to determine if the drugs are having the desired effect. So we take the drugs .... and we wait .... and we hope.

A couple of posts back, I mentioned that my bio-feedback practitioner found evidence that it was the daily IV vitamin C infusions that made a positive impact on my condition when I was in Mexico last September. So in December I increased my oral C dosage. My oncologist then told me that the drugs I am now taking will not work as well in conjunction with high saturations of vitamin C. So I have had to curtail my vitamin C protocol while on this drug. What a bummer. It's as if "life building" protocols are counteracting "life killing" protocols.

So sad I am to be on this train of destruction rather than that of "building up." Alas, it is important to remain positive, so I am hopeful that this drug therapy is working.

Next appointment for blood labs is in March. Stay tuned....   and keep those positive vibes coming!

DRUG H$LL

In my January 6 post, I talked about boarding the Big Pharma bus and how my journey was taking a turn down a road I am reluctantly following. To review: I am taking two new drugs: Afinitor (drug name "everolimus") and Aromasin ("exemestane"). I was under the impression that the Afinitor was NOT considered chemotherapy. I was wrong. Upon further researching, I found that it is indeed labeled "chemo," it's just supposedly more targeted to specific cancer cells than standard chemo (which pretty much kills everything).

I was able to begin both drugs right away because my oncologist gave me a week's supply of the Afinitor (although it was double the dose I was prescribed) and I was able to continue on Tamoxifen (an estrogen blocker I already had) until the Aromasin arrived.

So I thought all was well. I took the drugs and carefully monitored how I was feeling, hoping I would not experience any of the (absolutely terrifying) side effects that were listed in the drug description. So far, not a big deal. I have experienced stomach upset, loss of appetite, fatigue, and general loopiness -- but nothing that has kept me from average daily functioning.

Then I got a call from Humana, my drug prescription people. It seems I was being red-flagged because of the Afinitor order. The possibility existed that I might NOT be approved for the drug based upon my low-premium / high-deductible prescription plan with Humana. I was told that the cost of the drug was .... are you ready?..... $11,532.69 for a 28-day supply!! That comes out to approximately $412 per tablet. MY CO-PAY for this drug would be $2,600! I was asked if I wanted to go ahead and process the order and accept responsibility for this co-pay.

I was near tears. "Are you kidding me?" I asked the Humana rep. "Do you actually expect people to be able to pay this much out-of-pocket?" After a shameless rant to the poor Humana person, I apologized, told her that I knew it was not her fault; her name was Jessica and she was really very sweet and tolerated my rant with extreme patience. I then said that someone out there... not her, not me, but someone.... was making an obscene amount of money off the backs of "we the sick" in this country. Jessica agreed and sympathized. We mutually agreed that we were both in the system and could do nothing about it. She then said, "Humana has a finance department; they might be able to find you some financial assistance. Would you like me to begin that process for you?" It took me a brief 20 seconds to process what she had just said to me. I then responded: "WOULD I!? You bet, Jessica!" 

So the past week has been spent waiting for phone calls from Humana. Jessica put my claim onto the top of the "urgent" pile. I love Jessica for that. A few days later, I got a call from Carlyn (who happened to be in Ohio -- when I am on the phone with customer service people, I don't know why, but I enjoy knowing where they are when they talk to me); Carlyn gave me an update, letting me know that the Afinitor had been temporarily approved by Humana, PENDING my acceptance for financial assistance. I still wasn't out of the woods.

Today, I received a phone call from Tiffany (in Phoenix -- she enjoyed hearing that we were about to receive snow in the DC area). Tiffany was the angel of mercy blowing the trumpet of good news: I was approved for assistance. My co-pay would be 0 (that's ZERO) dollars. Amazing -- from $2600 to $0. 

So.... this has been a two-week excursion into drug hell. But ultimately, the news is good: the drug is approved and paid for and will be here in two days. My side effects are not great, but so far tolerable.

In the process with Humana, I found out from Carlyn that the foundation that is footing the bill for my drug is called Patient Access Network. I went to their website; it's a non-profit with HQ in Washington, DC. I plan to send them a thank you note; I might even deliver it in person because I would like to learn more about this organization. Meanwhile.... if you are ever feeling inclined to make a donation in my honor, whatever you do, DON'T let it be to one of those useless "walks for cancer awareness" or pink-ribbon organizations; let it be for Patient Access Network.

And let's hope this drug works! At $412 per pill, it oughta be the elixir of eternal life!!

Worry

A dear friend of mine posted the following on Facebook, just as I was sitting in my stew-pot of anxiety last week. It hit home -- hugely:

Worry is a waste of time.

It doesn't change anything.

All it does is steal your joy and keep you very busy doing nothing.

Well now, ain't that the truth!

The Bus: Driver or Passenger?

I am not sure why, but I use the metaphor of a bus for a lot of situations. For instance, when having a conversation about leaving this earthly plane, I often say something like, "Well, when my time comes, I would like to just get hit by a bus." This idea worked for me until someone pointed out that such a situation would create bad karma between myself and the poor bus driver, who would be overcome with guilt and remorse -- so much for that plan!

In my journey to overcome my cancer, if you have followed this blog from its formation, you will know that I am a proponent of natural therapies, and have tried to keep as far away from Big Pharma as possible. Since my initial diagnosis in the fall of 2013, I have prided myself on "being the driver of my bus."

After a visit with my oncologist today, my status has changed -- from driver of the bus to passenger. Which bus? The AMA-approved bus, the Big Pharma bus, a bus that travels a road much more heavily traveled than the less-traveled road I have been taking.

My C-T scan a week ago came back showing some signs of improvement in the original cancer sites; but it also revealed some new anomalies in liver and bone. For reasons that are very personal (and not to be discussed in detail here), I have decided to board the Big Pharma bus. This is not a happy decision for me, but will provide peace to my family instead of fear.

This means that chemotherapy might be in my future. But first, I am on two new meds: Afinitor and Aromasin. These are usually given together to try to force the body to overcome its seeming resistance to hormone blocking activity. Afinitor (scientific name Everolimus) is a type of drug that supposedly targets cancer cells more precisely than chemotherapy drugs. Aromasin ( Exemestane) is a kinase (enzyme) inhibitor. Using these drugs together is supposed to stop the tumor from making new cancer cells and cuts off the blood supply to the cancer.

Sounds perfect, doesn't it? Until you read the two-page list of side effects -- everything from nausea, mouth sores, cough (which I already have!) and diarrhea to rash, anorexia and hair loss.

But alas, I am now on the Big Pharma bus and no longer driving or choosing the route. Those side effects are just part of the road trip.

Some of you are probably thinking: Wow, Betsy must be so disappointed. Yes, I am. This is not the road I wanted to take and, quite frankly, it stinks. But then again.... I have been dreading my visit with my oncologist today, worried that she would say something like: "Well, look sister, you are in really bad shape. Ain't nothin' we can do for you. Go home and put your affairs in order." I did not get this message from the doc. I left her office thinking, "Well, dammit, this just might work." And she said, "Look, I could give you these meds plus chemo right out of the starting gate. But let's just see if the drugs themselves have an effect." So I will go back in three weeks and see how the blood work looks.

Keep those good thoughts and prayers coming.