Everything Changes - The Guide to Young Adult Cancer

I’ve long been afraid of medication, even over-the-counter meds.  Since way before my cancer diagnosis, I was scared of what the side effects could do.  I opted for just feeling my pain or taking natural remedies instead.  But having cancer changed some of that for me.

I used to not even take Tylenol for a headache.  Now I toss back two extra-strength at the first twinge of pain.  I want to nip pain in the bud because A) Feeling pain sometimes launches me into a cancer PTSD anxiety spiral and B) Since cancer I feel like I have filled my life time quota of pain.  Why have any more than I need?

Without going into huge detail about my bowels, I’ll just say that my doctor wants me to start taking a medication that contains aspertame and might make me feel bloated and crap a lot.  (Or it might not.)  The sample is sitting on my kitchen counter.  I don’t want to take it.  And then I laugh at myself.  Aspertame is ridiculously benign compaired to the hundreds of milicuries of radioactive iodine I’ve consumed.  Can I have made it through cancer treatment and still act like such a wimp about over-the-counter, pink lemonade flavored medication?  Indeed, I can.

Has going through a serious medical illness changed your relationship to having to take medication?  Are you more or less likely to take over the counter pills now?

Check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about how young adults can manage pain.

When it comes to following prescription drug dosing and directions, I’m like a teacher’s pet.  I’m terrified of potential drug side effects – almost to a neurotic and paranoid level.  And I do exactly what my doctor says.  But many patients don’t or can’t.  Especially with the economy in the crapper, I know a lot of people who are splitting pills or skipping out of medications all together.

There have been times, however, when I’ve made educated decisions to go against my doctors’ orders for procedures.  I don’t have a medical degree, but I do have a ton of common sense and research the hell out of my disease.   And sometimes it makes more sense to me to disobey what my doctor is recommending. Here’s an example:

The last time my doc ordered a biopsy of nodes that were half a centimeter, I said, “Forget it.  Let’s watch them and if they grow larger than 1 centimeter, I’m game.” I’ve done my reading.  Medical guidelines don’t recommend biopsies of puny thyroid nodules less than 1 centimeter because the results usually come back as inconclusive.

But, sometimes my desire to disobey my doctors isn’t because of common sense examples like this.  It’s because I’m scared of pain.  I loathe anesthesia.  I don’t want to make one more trip to the friggin hospital.  I’d like to forget the trauma of being a young adult cancer patient.  These are the times that I fantasize about disobeying my doctors.  But still, I drag my myself to the hospital for the scan or surgery anyway because it is the smart thing to do.  (Says the woman who is long over due for a pap smear.)

I try hard to leave my emotions out my medical decision making. I don’t believe in using prayer, faith, or hope when it comes to making sounds medical choices either. I am a staunch believer in evidence-based research and common sense.  I am shocked though how often my really top-notch doctors do not approach my case with common sense.  This most often happens when they are racing the clock, or treating me as a statistic and not an individual whose symptoms and responses don’t always match the typical patient.

I’m not trying to promote Bernard Getz style medicine.  But I am interested in taking action when educated, logical decisions makes more sense than my doctors’ recommendations.

Have you ever disobeyed your doctors orders?  What was your reason for doing so?  Have you ever wanted to disobey their orders but been too scared to?

Read Everything Changes: The Insider’s Guide to Cancer In Your 20s and 30s to learn about Geoff who ignored his doctor and went mountain biking the day after his port was installed.

I read a fantastic article in the New York Times, by Lesley Alderman, about how to save money on prescription drugs. I’ve slash out the doughnut hole lingo and other senior factors and created a summary version that relates more to 20 and 30-somethings.

As part of the research for my book, I’ve done a ton of research on resources for discount drugs, and other forms of financial assistance for young adult cancer patients. On the right column of my blog page, click ‘Download Chapter One’, underneath the cover of my book. The resources section at the end of this free PDF is loaded with my finds.

Snail Mail Drugs
If you have health insurance, call the 800 # on your card or search on line to see if your company offers a drug mail order system. Many do. This service tends to be used for prescriptions you take on an on-going basis. For example I pop a levoxyl every single day, and will for the rest of my life. I could get these sent in the mail from my insurer at a huge discount. This service, however, would not be used from a temporary drug, such as an antibiotic for an infection. The paperwork to sign up for this service is relatively simple, so what the hell am I waiting for? Bulk levoxyl here I come.

Brainstorm With Your Doc
To your next appointment, bring a list of your Rx’s or the actual bottles. If you have health insurance also bring a copy of the list of drugs your insurer covers – this is called a formulary. You can get it by calling your insurance company or visiting their website. Then ask your doc the following questions:

• Is there any duplication of medications – are they all necessary?

• Have they all been effective and do you need to remain on all of them?

• Are you still on the correct dosage?

• Is there a generic version that could be used instead? (Be sure to ask about generics anytime you are given a prescription.)

Comparison Shop
If you are paying out of pocket, check out Destination RX to shop around for the best prices on prescription drugs. Times reporter Lesley Alderman also suggests trying the local or mom and pop drugstores in your area too. Sometimes they have surprisingly lower prices.

No Insurance or Low on Cash
If you don’t have insurance visit the Partnership for Prescription Assistance, that has a database and online application for free prescription programs for low-income, uninsured, and underinsured patients. Yes, the organization irritates the hell out of me because it is a non-profit group run by pharma to help those of us who cannot afford their drugs, and they are likely just getting a tax deduction from it all plus good PR, but I guess we take what we can get, right?

Are there other ways that you have tried to cut your Rx costs?  What was the most you have ever paid for a prescription?  (I once got a shot that cost $2,000.)  Do you ever get Rx by mail?  If so, has it saved you money?