Speed Bumps

After a whirlwind of activity moving us towards treatment, this week we hit a bit of a stall.  When we met with Dr. Hutchison on the 17th, they told us the Lupron injection could be picked up at the pharmacy located beside his office and he could give it to me that day.  (Yay!  Instant menopause!)  Milo and I were more than ready to get things moving; while Dr. H finished with his prior patient, we headed to the pharmacy to get the drug.  This was where we met our first disappointment of the day.  Our CVS Caremark prescription plan told the pharmacy that we couldn’t purchase the drug there despite having told the doctor’s office they could call it into any pharmacy.  When I was willing to just pay for it myself and get going, I was told the cost was nearly $2000.  I am a nurse and we have a comfortable enough living, but that’s a bit rich for my blood.  Picking it up was clearly out of the question.

We returned to Dr. H’s office to give them the news that The Apothecary (the name of the pharmacy) was not an approved location and it would need to be called in elsewhere.  Pam, his MA, said she would take care of it for us.  She led us to the doctor’s office and we sat to talk to him.  He explained, again, what he intended to do with the Lupron while asking me questions a fertility specialist would be interested in.  After about twenty minutes, he had Pam take us to an exam room.  We were going to count how many follicles (potential eggs) were present in my ovaries and take a look at my female gear.  (I just love impromptu gynecological exams.)  What we discovered was, for me, equally as upsetting as learning I had cancer.  My ovaries were severely enlarged and both the ovaries and uterus were cystic.  While I had plenty of egg reserve, Dr. H felt that I hadn’t been ovulating for some time because of the size of my ovaries.  He immediately diagnosed me with PCOS (polycystic ovarian syndrome) and told me he wanted me on a special diet.  He recommended I see a dietician, explained I might need to go on Metformin once my chemo treatments were done and that as soon as possible we should get on the Lupron.

I left there in tears.  All these months of trying to get pregnant only to learn that my body had been fighting us from the get go.  He had calmed me slightly by saying the inflammation in my ovaries wasn’t the cancer spreading, but to know that I was why we couldn’t get pregnant really broke my heart.  It was just too much on top of everything else.

The next day, I went with my parents to meet with the nurse practitioner, Linda, at the oncologist’s office.  This is where we learned more bad news from the insurance companies –gosh they are awesome!  They were not going to cover the injection at all because “Fertility preservation is not an approved diagnosis.”  Thanks Caremark, you rock.  Apparently, infertility, or the preservation of one’s fertility, to the insurance companies isn’t something for which you should be treated.  If you don’t want a baby, though, we’ll happily pay for you to have the pill!  To top it off, Blue Cross Blue Shield was refusing to pay for my PET scan because “cholangiocarcinoma does not require a PET scan.”  What?  Because my tumor might have started in my bile ducts it doesn’t require a PET scan to see how far it had gone??? Really?  That’s…wow.

Linda didn’t really have much else to say since we seemed to have hit a brick wall.  She did, however, decide we needed some blood and that we would access my port to do it.  By this time, my mother had already withdrawn from the situation; she just couldn’t listen to us talk about the seriousness of my cancer.  It was far too much for her; as dearly as I love her, it is difficult to babysit her feelings when I need to be frank with my physicians.  I decided then and there that I needed to be really selective about who came to appointments with me or were allowed to sit with me during my chemo treatments.  Everyone might think they are strong enough for the situation, but when faced with the challenge of listening to the facts it is an entirely different ball game.

Linda led my father and me to the chemo room, where they would access my port to draw the blood.  I was not really that excited by the idea.  The port was less than a week old and tender to the touch; I didn’t want them to stick a needle into it, especially since this wasn’t a small needle.  It is a large, curved metal needle that is insanely painful looking to the casual observer. Unfortunately, I didn’t get a say.  They sat me in one of the chairs where they would give chemo and I waited about ten minutes, growing more and more anxious by the second, for a nurse to come over and access the port.  The nurse didn’t introduce herself, but was kind and sweet, trying her best to make me relax.  Though she admitted it would hurt a little, she offered to spray a numbing agent onto my skin to help a bit.  The numbing stuff was cold and then stung like pins and needles.  Before I could do much else, she had me turn my head, take a deep breath and on three let it out slowly.  On three, she jabbed the needle into my port.  I flinched.  Damn it was sore, but it didn’t hurt as badly as I had expected.  In fact, it was no worse than getting a shot into the muscle of my arm except for how tender the site was.  She had drawn the blood and de-accessed the port before I could even complain.  The nurses there are especially good!

The next day, I was back to my light duty at work reading charts for review.  My boss, Ann, had been kind enough to get Employee Health to find me something to do so I wouldn’t lose my job.  I have to admit, it was a major relief not to be stressed about job security.  While there, I tried to contact Caremark about the injection but they wouldn’t budge even a little.  I needed the injection, pronto, so we agreed that we would just pay for it (ouch).  Monday I get the injection from Dr. H and I should start chemo sometime this week.  Here’s to the battle!

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2 thoughts on “Speed Bumps

  1. Mischala says:

    Janine,

    I’m always thinking about you and finally just got to this site to read what you have written. Hmmm, not surprisingly after the greatest red and white blood cell essays to ever cross my desk, who would have thought you would make a whole blog out of the cancer cells. I love that you are honest, I love that your posts have their ups and downs and back ups, I love that you (again not surprisingly) are doing this so others may be comforted. You are still you, I see it in this blog. You are amazing, this cancer has no idea the tour de force it is up against.

  2. Sara says:

    Don’t be discouraged about the PCOS. I have it too and was told by quite an uncaring doctor that I’d not be able to get pregnant (before he even found out that was my problem!!)

    My husband and I were SO upset by this news. I would up going to another doctor who wound up (coincidentally) treating my diabetes with the PCOS miracle drug …. metformin. Three months later came my surprise.

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