Maybe I’m Amazed (you’re still alive)

Borrowed time:
(To)live on borrowed time
to continue living after a point at which you might easily have died:
Since his cancer was diagnosed, he feels as if he’s living on borrowed time.
to continue to exist longer than expected:
It is unlikely that serious decisions will be made by a CEO living on borrowed time.

Definition of “borrowed time” Cambridge Dictionary Online

The value of living on borrowed time bears an interest rate that’s unpredictable and unpayable. Apparently last December, my body had an amount of cancer physically insurmountable by standard oncological metrics. My disease probably should have killed me by now. How do I find a find a way to absorb such potentially life altering information? I’m unsure how to feel about it, since my recent scans showed that 26 weeks of Taxol had gotten rid of my tumors, and my bones revealed not cancer but the mesh-like scars of healing?

Since last week a cloud of oxymoronic amazement and fear hung low and put a bit of a fog over my generally happy convivial personality. Introspectively and quietly I digested the news my doctor delivered on July 1st. He didn’t expect me to make it to sit in his exam room through much of this year.

As I quickly scanned my mind for clues to his unrealized prognosis, I could only recall a few subtle cues. He became more empathetic generally and more concerned with my stressors at home. He’d say “bless you, Ilene, you’re a very strong woman.” He’d force smiles sometimes. I thought he’d been overwork and just tired.

This week a very competent nurse practioner took my vitals and we discussed my health in general, my increased neuropathy, my overall issues with pain from fulvestrant, and how I’m tolerating Ibrance and fulvestrant combined treatment. If you’re not familiar with Ibrance, it’s a targeted therapy used to treat metastatic breast cancer in patients who are hormone receptor positive by going after CDK 4/6 receptors that basically stimulate the growth of malignant cells especially in metastatic breast cancer. In studies the drugs that are chemotherapy, although taken in a pill form at home has shown an extension of time without new cancer growth and a halt of current cancer growths by about two years. In metastatic terms we like two year life extensions.

However the drug still costs $18,000 per month. I lost my Ibrance after the second dose spilling 26 capsules down the toilet. Yet here I am alive and with my disease stable and poof like that once again Ibrance gone. I cried from frustration and worried for my life again. But the nurse practitioner put my mind at rest and called Stanford’s pharmacy where I am now getting my at home bottles of chemotherapy from, and they procured a full emergency prescription through my new Medicare part D insurance company Blue Shield. Now, all is right in the world and with little stress on my end. The very thought of an agency going to bat on my behalf gives me hope that there are people who understand that stress kills cancer patients by infusing the body with cortisol, a cancer cell’s favorite desert. Now I am back on the medication. Borrowed time indeed.

PET Me.

During the same visit my oncologist came in to see me. He revealed that he didn’t think I’d make it through March of this year. He said, ”keep continuing to amaze me.” I, his miracle kid, amazed him? The clues of his grave and real concerns about my mortality started before the commencement of my appointments. He projected and telegraphed this through his change in facial expression, with the bounce in his step and via the quickness of his pace when entering the exam room. He looked at me quizzically and it seemed to me quixotically in the fanciful way one might peer into a lions den and hope the big cats weren’t hungry.

Prior to May’s PET and June’s CT scans he quietly would sneak up on me with his lips pursed and brow furrowed. “How we doin’, ” he asked with hesitation. ”Great!” I’d exclaim. And given the circumstances it was true. My white blood cells and liver function both responded by remaining stable even with Taxol for 26 straight weeks.

Yet there’s another twist to my life extension and projected expectancy. If you’ve read my earlier posts from December of 2018 regarding my hospitalization it was due to a complete clusterfuck by the Medicare part D insurer Silverscript, Pfizer, a nurse practitioner at Stanford Cancer Center, and the problem of the drug costing so much money that no one without insurance except the hyper rich can afford it.

It was due to a fax that the Stanford nurse practitioner never sent to Pfizer for a three month hardship supply because my insurance was dropped by Silverscript and the CVS Specialty pharmacy (both owned by CVS talk about the Fox guarding the henhouse!). I went four months without treatment and landed in the hospital for over a week until I went poop. And as all of you who have cancer of any kind know, your digestion is of utmost importance to your oncology team! Pass gas and you’ll pass the get out of the hospital test. Passing bowel movements is even better.

Good Times, Bed Times

Today was a bed day. Never got up once. I did bathe and fell asleep in the tub, but I needed to rest my body in the transition from one poison to another and from the psychological internal melodrama of finding out I should be dead. I’m glad to be here writing this post at the four year and four month time stamp since diagnosis. I’m pushing hard for year number five, and here’s three things I’ve learned through this waking nightmare called metastatic cancer:

  1. Meditate. The mind truly is connected to the body and I know along with everything else I do this is mission critical as much as keeping stress to a minimum.

  2. Cancer is about money and metastatic cancer patients are loose slot machines that pay out consistently like the ones near the entrance to a Vegas casino to lure people inside. Follow the money if you need something like medication.

  3. Trust your instincts and listen to your body. For instance right now I know my ascites is acting up and I’m going to push for a draining periocentesis since sleeping morning to morning is one way my body tells me to get a move on with the procedure.

And until my next post, be well, have fun, and follow your heart. Sometimes following only your head can send you down the wrong path even with the right logic. If there’s no path in to put your left foot on, just feel free and your right foot will land on a cobblestone and off you’ll go in a new direction.

💜

My Struggling Ugly Days with Metastatic Breast Cancer

Everyone says to me that I don’t look like I have cancer. But I do have cancer. And there are days when I feel like I have all the cancer in the world. Today because of some screwup, I had been out of my pain medication for close to 48 hours. I take opioids daily to function and to have pain relief from the red ants crawling around my ant farm bones, biting my insides where you can’t see me.

I also take opioids to relive my abdominal cramping and pain from a continual battle with ascitic fluid in my abdomen, which I’m having drained again Tuesday morning and was supposed to have labs for today at Good Samaritan hospital, but I couldn’t drive. I couldn’t get to my palliative oncologists appointment either. My plan was 1. appointment and 2. blood draw, 3. then home. However, I came to find myself locked in a week long pharmacy-doctors office-nurse-communication struggle to receive these certain classifications of medication. I hope you never have to know the pain and suffering of metastatic cancer and the withdrawals associated with 48 hours of being out of your opiate based medication.

My beautiful angel friend and neighbor of 10 years had to see me like this today. I had to interrupt her busy day for this errand to get my medication. And she’s a terrific single mom of a terrific kid who I’ve seen grow up into a fine, happy, helpful and wonderful adolescent after 10 years. But to me he’s still the infectious giggling little boy. Only due to her being an awesome mom.

Yet today I know I scared her. I gave her my wallet and called Walgreens and she was visibly nervous. This is an ugly troublesome facet of my disease and a side reserved for my private hell. I do not even let Craig see me this way. Simon, seen here giving his mommy mouth to snout resuscitation, and love and kisses and trying to wake me up to feed him which I must go do, is the only one who sees me like this.

But I’ve decided to share with you the ugly side of metastatic cancer. The painful side. So, based on my no bullshit blog policy, I’m sharing selfies so that next time perhaps you’ll refrain from wanting to say to anyone with metastatic cancer, “you don’t look like you have cancer.”

#Chemotherapy and The #Customer Experience: #CVS, #Pfizer, and the danger of #outsourcing without educating agents

The scene from the movie, “The Jerk,” with Steve Martin, in which he becomes “somebody” because he finds his name, finds himself, in the local phone book. For those readers too young to have experienced this simple pleasure, you probably haven’t a clue what a #2 pencil and a cassette tape have to do with one another, either. “Hey, Ilene, what the fuck does phone book, “The Jerk,” cassette tapes, and a pencil have to do with cancer?” you’re asking? Well, gather round kids, grab a s’more, and I’ll tell ya. Not a goddamed thing. But neither should outsourcing and chemotherapy have anything to do with a patient who is speaking to a foreign call center with an agent without training to speak with stage 4 cancer patients, either.

Should FEDEX and UPS both of which delivered separate packages, have required a signiture from my partner or I as the special victims unit of CVS Carremark located in India? By the way, both packages contained VOLUMOUS amounts of Phizer literature. I used their web site irrespectively, even if the loads of junk looking mail in both boxes were important.

I am not a happy customer and my experience with this chain of events was on a scale of 1 to 5 a negative 2. The stuff could have sat in the sun on my front stoop all day rendering it useless had we not been home, seeing as the packages arrived one day early. Indeed no signiture was requested for my Ibrance chemotherapy . While online shopping for the holidays hits an all time record this year, so do the numbers of packages stolen from porches all across the United States. An abhorrent disregard for those of us who face awful diseases combined with theivery creates little dollar signs in the pupils of the eyes of would-be gift grifters. Like Richie Rich of comic book infamy, the spoiled rotten Peter Pan with dollar sign eyes, wearing Angus Young’s schoolboy stage outfit (sigh…the lead guitar player and co-founder of metal band AC/DC. A band named for the two types of commercial electrical currents that were the talk of the investment and scientific communities around 1900 and the fight between whether AC – Nicola Tesla, or DC – Thomas Edison, would prevail. AC won due to Tesla’s selfless power to the people efforts. Not AC/DC the slang term for bisexuality, although I am in huge support of anything anyone wants to do or try or be as long they consensually do it while not hurting anyone or anything.)

Okay, back now. Where was I going…

Right! CVS called to schedule the delivery of my first 21-day supply of Ibrance. I spoke to a nice enough woman who then asked that I hold while she was going to hand me off to someone who would get my information. Excuse me?

I was transferred to a man in an India-based call center who CLEARLY had no idea what the fuck Ibrance was for, since he was WAY TOO CHEERFUL and kept asking me how lovely my day was going and how great was I doing today!?! And he was VERY INSISTANT that me or my partner be at home THURSDAY, not WEDNESDAY, when Ibrance and a second unknown package containing oadnestron, a prescription anti vomit pill apparently my cool and yet sweet and very smart oncologist prescribed, would arrive.

So now the contact center has his infornation and mine stored neatly in a database to ANNOY US BOTH at some later date. Bad job, CVS, very bad customer experience indeed. Get your shit together or give Phizer’s the chance to outsource its fulfillment and support business for cancer medications to a company that will TRAIN ITS AGENTS on their customer’s needs. Yes, I did receive my Ibrance, and after reading enough about side effects, how to avoid them, and whatever else Phizer’s WEBSITE had to offer, here I go. Wish me good luck, good health, but please do not for the love of things great and small ask me how great my day is going.

I might puke on your shoes 🖖🏼