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Saturday, May 7, 2011

Big Decisions

I've been kicking around a lot of ideas lately, many concerning my blog, many concerning where I go now regarding life, treatment, the future.  I've composed numerous entries in my head; however, inertia and the end of the semester have really done a job on getting anything posted here.

To start things off, for those of you not following along on Facebook, I'm doing much better psychologically.  Mostly.  I'm feeling like that little dip into depression was caused by anesthesia and forgetting to take my Lexapro for a few days.  Not something I want to experience again.  The whole two surgeries this past academic year, over the dark months nonetheless, has rather messed up my self control, especially regarding eating. I've been indulging in more food in general and more comfort food in specific.  Add to that some physical limitations, such as problems with my heels and being forced to NOT do cardio for periods of time and just crappy weather, I've rather porked out over the winter.  I've been doing 4 days a week of exercise classes, but that's certainly not the same as doing classes plus running.  When I switched out my cold weather with my warm weather clothes, I was really disappointed to discover that I can't even zip some of my pants.  So if you see me wearing the same clothes over and over this season, just ignore it.

Also for those of you not following along on Facebook, I have decided to go back into treatment starting next week.  When I talk with people and when I do research, I get mixed results as to whether this is chemotherapy or not.  The makers of the drug, the nurses at the specialty pharmacy I deal with, and much online literature calls it chemotherapy.  My onco nurse doesn't refer to it as such.  The drug itself is Tykerb.  And I'll be taking it off-label. So if you read that Tykerb is used for advanced, metastatic breast cancer, which I do not have (that I know of).  Although functioning in a chemically different way, Tykerb functions very similarly to herceptin, which I was infused with for over a year.  Herceptin "attacks" or "blocks" the protein that the type of cancer I have expresses.  Herceptin is a large molecule.  Tykerb has a small molecular structure and invades cancer cells and also is effective against two types of proteins whereas Herceptin is only effective against one.  Tykerb also crosses the blood-brain barrier (BBB) and Herceptin doesn't.  Normally, Tykerb is taken with two other drugs, which I won't take because I do not have advanced disease.  Most of what is written about Tykerb is written with the assumption that it is taken with one of these two drugs.

This has been a difficult decision.  Initially, when I expected my insurance to deny me coverage, I was all over taking Tykerb (it's a pill, by the way...or rather 4-6 pills a day.  I'll be taking 4.) .  Tykerb is expensive, and as I said earlier, I am taking it off-label.  Another friend of mine who has the same health insurance plan was denied coverage for Tykerb a year ago.  I've seen it quoted at anywhere from $3K-$6K/month.  Assuming that I'd be denied, it was easy for me to agree to try.  Really, I had not decision to make.  My insurance would make it for me.  Then, I got a phone call saying that my insurance would cover it, but that my co-pay would be $2K a month.  At that point, it was easy for me to be indignant and to say that I would take it but that I was unable to afford to take it, and I could then rant about death panels and get on my high horse about the need for health care reform.  And, although I was concerned over my longevity in the face of not taking it, yet it was good.  The decision, ultimately, was out of my hands.  And if I got a recurrence, I could blame my insurance company and the Republicans who blocked a decent (or any, really) health care plan.

Then, out of the blue, while sitting in the Walmart parking lot with Amy, I got a phone call.  Some odd woman was telling me that my insurance did blah blah blah and my co-pay was going to be $100 a month and how did I want to pay for that this month?  It was surreal.  I paid by credit card, and she told me that the Tykerb would be delivered in two days.

So, my hasty "yes, I'll take it" without really investigating, since I wasn't really going to take it any way, suddenly became a reality and I new very little about it, other than how it worked, and that it was some serious stuff because in saying "yes, deliver it," I suddenly had to to have two 20 or more minute long discussions on the phone with nurses, an order for blood work, and a book was delivered to my home detailing what side effects to expect and how to deal with them.

Side effects.  Do I have to?  Really?  For starters, it can cause fatal liver failure.  Sure it can.  Like all chemo, it's toxic (by definition, really).  It can also cause congestive heart failure (probably reversible, as if that's a comfort, given that I watched my mom die for chf).  It can also cause lung problems (and to be honest, I've just been to freaked to find out about those).  All of these problems are found in a small percentage of patients, and my doctor doesn't think I'm at risk.  Yet...

hand/foot syndrome, which I hear is a horrible experience--redness, swelling, peeling, sometimes blistering on the palms of the hands and soles of the feet (my friend Scott has experienced this recently and it just doesn't sound fun or like something I would tolerate with grace).  On the bright side, hand-foot syndrome, according to my onco nurse, seems to only happen with the addition of one of the other drugs I won't be taking, exactly the drug that Scott is taking.  So, I'm hopeful.  I have enough pain in my feet already (more about that in another post, as it seems to not be a cancer related pain but perhaps plantar fasciitis).

Tomorrow, then, I'm off to the lab for my blood work in the morning.  Then, sometime between then and Sunday evening, I need to discuss this all with boys 2 and 3 (boy 1 is in the loop), and Sunday when I go to bed, I will down the handful of large pills and be on my merry way.  I've committed to the summer.  All I'm doing this summer is one week of scoring AP exams in June, teaching one class in July (a total of 7 classes and 4 faculty meetings), and taking two courses independent study myself.  I'll reassess in August and decide if I'm going to stick it out through fall semester.  I'll reassess in December if I'm going to finish out the year of treatment.

At least my hair won't fall out.

My second decision lately is that I need to do something about this blog.  What, though, I'm not sure.  Look for changes in the future.


Karen said...

Geez, Louise. I wasn't picking up on exactly what was going on with you, but I thought it was normal followup stuff, not a new course of treatment. I'm sorry to have had my head up my ass.

I have to conclude that the medicine is good for you because of the way it found its way to you -- a phone call out of the blue, the manageable cost when you expected it to be out of reach. Guess you're supposed to take this stuff, huh? The universe has spoken.

Always have you in my thoughts and prayers, friend.

Anonymous said...

Well, Dawn, once again, it's great to hear from you!! Lisa