All those drugs

When you are diagnosed with cancer, they start handing out prescriptions like they are candy bars. Take this to prevent infection, take this one for pain for the next five days, take this one for stress, and they they keep adding more and more. Precancer, you can live the life of Riley. Post cancer, you have to adopt the weekly pill box that you religiously fill each Saturday and when you travel your tooth brush and passport are no longer the most important things to bring.

Currently I take five medications daily - including the one I am weaning off that has been replaced by a pain patch (which works much better). These include post thyroid cancer replacement meds, post breast cancer hormonal meds, anti inflammatories for my back, pain pills for my back, and an anti depressant to help me cope with the lovely state of my health. Then I have two 'just-in-case' prescriptions plus a different pain patch. In addition I have a little stash of a varying number of bottles and pills that I tried or took for a while and no longer use.

Of these, I know at least three of them have what I call 'street value' meaning I could find  someone to sell them for me on the side if I was inclined to break the law and contribute to the drug problem in this country. Instead at least once a year I take my unneeded medications to the drug collections at community events for proper disposal. I will not flush medication down the toilet because that causes other problems with drugs in the water supply.

I will not give them to anyone else. I know people who routinely share their medications with friends and relatives. This is illegal to start. There was a time as a teenager when I was in a remote portion of Maine and developed an abscessed wisdom tooth and was a four hour bus ride, followed by another three hour drive from home where my mother gave me a couple of her pain pills. But that clearly was an exception to the rule.

I have one friend who talks about getting medications from her sister and her sister in law from prescriptions they get and either don't use often or don't have a problem getting them refilled. I think they see it as 'well she wasn't using it so she gave it to me'. Probably these drugs are not going to fall into the wrong hands and leave this little circle but it is still illegal and I haven't quite figured out why they do it. Another time I was on a retreat with a bunch of women and one of them started asking everyone for an ativan so she could sleep. Um, I did not speak up but someone did give her one, to my dismay.

My policy is my doctors gave me my drugs and they are not for anyone else's use. Sorry. If there were undue circumstances where I had pain pills and there were injured people far from medical care, I might share, but they would have to be dire circumstances.

Health insurance companies are getting more and more on the bandwagon to help prevent the availability of prescription drugs on the street. Blue Cross of MA has just announced a program where prescriptions will be filled for certain pain pills for 15 days and refilled for another 15 days without prompting a review. Unless they are for cancer patients or others with terminal illnesses.

They hope not to bury the medical profession in more paperwork but they also realize there are too many patients who refill unneeded pain medications and they end up on the street.  There is a real problem with pain killer abuse in this country. I have two goals here: not to contribute to that problem and to make sure I don't end up with any unwanted dependencies either. I try to eliminate as many prescriptions in my life as possible. Popping a pill isn't an answer.My doctors have offered others for various ailments and I decline.

I would be happiest if I could be so healthy that I had no prescriptions.

Hospital parking

Yesterday I went to another hospital - not as a patient. I was there to staff a table at a community wellness day. It was full of all sorts of free screenings - PSA, skin, thyroid, cholesterol, diabetes, blood pressure, cardiac monitoring, balance testing (I passed that one) and many more. It was a nice event and I thought it was productive - meaning it created more follow up work for me. (Even though they had a continuous loop going from a camera from a colonoscopy - thank GOD I was not right across from that!)

One of the big patient peeves where I am treated are the parking fees for the garage. They are $2 for the first hour, $5 for up to 3 hours, and then $8 for 3-24 hours. The goal is always get in and out in less than an hour. Everyone complains about the parking fees because it used to be free before there was a garage and only a giant lot where you had to walk for miles to get back to the main entrance.

But at this other hospital, where half their parking is in a lot along side of the highway out in the suburbs (read 'giant snow filled parking lot in the winter where you have to figure out which bump is your car and then dig it out before driving home'), has higher parking fees. The list started at 0–½ hour - free, ½–1 hour: $4, 1–2 hours: $6, 2–3 hours: $7, and 3–24 hours: $8

Your basic doctor appointment is going to last an hour-ish by the time that you get in and out and sit around the waiting room, so unless you are lucky enough to get in and out in 30 minutes (doubtful), you are probably going to pay $6 for the privilege of parking. If you want to go to a fancy hospital in Boston, parking is more. $8 for the first hour - ow! 

I for one don't mind the parking fees. Its expected these days to have to pay to park anywhere close to where you want to be. I still live in a town without parking meters up and down the main road but I am sure this will change. We have stupid parking lots with those little machines we love to hate - put in quarters only for a little slip of paper you need to walk back to your car to put on the dash board. Half the time they are broken so you have to leave a little not for the parking ticket man so he doesn't leave you a ticket.

Really I am just not a huge fan of hospital parking. I spend entirely too much time in the parking garage at the hospital anyway. I am down to only  a couple of appointments each month right now but still its too many.

New treatment standards

I am always torn when new treatment standards are announced which promise the same or better results with fewer side effects. My first thought is always "why didn't they have that when I was treated". I actually find it worse when they decide that the previous standard of treatment didn't really work, but that's another story.

In thyroid cancer treatment, the first step is a thyroidectomy. Because of where your thyroid is, it is virtually impossible to remove it all - its kind of squished in between some essential body parts - spinal cord, esophagus, wind pipe, arteries, vocal cords - that are pretty darn important. So after removing as much of your thyroid as they can, they treat patients with radioactive iodine to dissolve the rest of your thyroid. Thyroids absorb iodine - which is why we have iodized salt. Now that sums of my medical knowledge on the subject of thyroids. I haven't had one for so long I haven't really spent much time learning about it.

The problem with radioactive iodine is that it is radioactive. And patients treated with it tend to be radioactive as a result. And while they are 'glowing' going out in public isn't a good idea, nor is exposure to small children, pregnant women, etc. So often, after treatment, patients are stuck in isolation for a few days - which just sucks. Pretend you are the boy in the plastic bubble for a few days and you'll get the point.

Also before the radioactive iodine treatment, patients would have to go off their synthetic thyroid hormone for two to four weeks and live on a low iodine diet - no shrimp, no salt, and nothing made with either to start with and then a few (thousand) more restrictions on top of that. And since you are off your meds for so long, you feel like hibernating.

Now they want to change all that. They have found that they can reduce the radioactive iodine dose to 1/3 of its current dose, orally as an outpatient. And they do not have to reduce their synthetic thyroid dose either. So for the patient, its easier, quicker, and less disruptive. (For the health insurers, it costs a lot less so even they are happy.)

The only burning question is - when will it appear at a hospital near us patients?

What is wrong with these people?

Allow me to preface this by saying I am all for treating people with medical ailments normally. A friend's son is going to have scoliosis surgery shortly and my advice to her was 'treat him normally, he still should have to do homework, set the table, etc'. This is very important. They are human beings with an icky diagnosis. They shouldn't get to bend rules because of it. (I have another friend who was pulled over for speeding on the way to our support group. She burst into tears and told the officer she was rushing to get to her breast cancer support group and he just gave her back her license and registration and told her to slow down.)

But as a rule, treat people who have ailments normally. Just because I had cancer twice doesn't mean I get to cut in line at the movies or skip paying taxes (but I would consider it if it was legal). Keep treating me normally gives me the emotional support in that I am normal and I will still be here.

Sometimes there needs to be an exception or two. This woman is trying to finish her Master's degree and will finish her last credits in July 2012. She would like to participate in the graduation ceremony in May 2012. Chestnut Hill College is refusing this. Their policy is that, unlike most other colleges, students can't participate in the graduation ceremony if they have any outstanding credits to complete.The problem is she has an incurable form of Hodgkin's Lymphoma and there is a good chance she won't be here in June 2013.

Hello, what is wrong with you people? Do you need a smack in the head to get your brains in gear? Her oncologist has sent in a note as well as other supporters. This is a lifelong dream. She doesn't have that much time left. Your stupid rules are taking away one of the few dreams she has that she might be able to attain in her shortened life. Sometimes exceptions do need to be made and you stupid people are too stuck upon your policy to recognize when being nice could go along way. And your policy isn't even in line with most other colleges. So maybe its time to rethink this one.

This student has accepted this but she hopes the school will change the policy for others like her in the future. So please wake up and smell the coffee here.

Treatment options

So what if during your breast cancer treatment you were given a choice of treatments with essentially the same expected outcome:

- lumpectomy with standard radiation for 5-6 weeks, or
- lumpectomy with seeded internal radiation for 5 days known as brachytherapy

Which would you choose? Probably the one which offers the shorter treatment span. And what if we added in the note that the shorter treatment option would leave the patient with a higher risk (30-50% higher) of needed a mastectomy or side effects such as necrosis, rib fracture, or infections.

Hmmm.... that complicates the decision a bit. Me, I cant decide which one I would select. I can see the benefits of shorter treatment time and personally found radiation a real drag in that I had to go every day for so many weeks. I see the appeal in the shorter treatment time and if given the option that it would have the same expected outcome with the higher risk of side effects I would be concerned.

Side effects can't be undone. If you have a mastectomy,  necrosis, rib fracture, or infections they can be very stressful and never go away. You can't undo a mastectomy. A fracture, necrosis, or infection will heal but may result in more scarring or other long term damage.

In brachytherapy they basically stick radiated stuff inside you which has a definite 'ick' factor as well. I don't care what the half life is, I'm not sure I want anything left inside me.

What this is telling me is that just because a new treatment option sounds good, we need to be concerned with the long term side effects as well. We complain that the FDA can take eons to approve a medication or treatment protocol but they also need the time to learn about the long term effects.

Obsessing

So how much do us cancer people think about cancer? This summarizes it. Except the years are wrong. This was my life in the years surrounding 1981 and surrounding 2007.

You do see that it starts to taper down but with every cancer related appointment or medical adventure you get yanked back up to the top level. This is my life. Today, we'll just say I have a couple of cancer related appointments. How's my stress level? I thought I was camouflaging it well but have been accused of crabbiness over the past few days so maybe I am a tad stressed.

We'll see what the day's adventures bring.  First I will go to the gym to work off the fattening food I ate yesterday. Then I will get some work done before spending some quality time at the hospital. Then I get to go to a meeting if I am still sane.

There was an article recently in the field of Psycho-Oncology that talked about how the way the patient feels in terms of fatigue, symptom burden and risk perception caused the worry regarding recurrence. But I disagree. Once you have cancer, no matter how you feel, you are going to worry about recurrence. And the field of psycho-oncology? I think all oncologists should have a background in psychology to help their patients cope and improve their bedside manner.

All cancer people obsess over recurrence whether overtly or internally.

Predictive risk screening

We have all heard about genetic testing to see if you are more likely to get an ailment or not. I am not sure if I would do that or not simply because I am not sure I want to know. I can look at my family history without a genetic test to get an idea of what I might get. Oh, but there were no cases of breast or thyroid cancer in my family....

Actually the vast majority of breast and other cancers are not caused by genetic or family history. They just happen. There are risk factors that are known but the real reason of why someone gets it instead of someone else is not really known. But there is a fear among women regarding getting breast cancer. A lot of women are just scared of it.

So even though we do not have the cause ironed out, a company, BREVAGen, has developed a predictive risk screening test to see if women are more or less likely to get the disease. And they are selling it.

'"The vast majority of women who get breast cancer do not have familial history such as first degree relatives with cancer. For those patients, BREVAGen allows me to make informed decisions based on their individual risk indicators and genetics"... "Determining the appropriate level of surveillance is critical for patient compliance, early cancer detection, and controlling healthcare costs. BREVAGen helps me identify those patients that benefit from a more intensive surveillance. This proactive approach might include breast MRI and/or the use of anti-estrogen medications, coupled with patient lifestyle changes, all focused on the prevention or early detection of breast cancer." 

BREVAGen is a clinically validated predictive risk test that more accurately identifies a woman's unique risk of developing sporadic, estrogen-positive breast cancer. BREVAGen examines a woman's clinical risk factors, such as their lifetime exposure to estrogen, combined with scientifically validated markers to determine each patient's personalized five-year and lifetime risk of developing breast cancer.'

Hmmm... so they are analyzing exposure to risk factors. But that does not give us a cure.This is part of the role personalized medicine plays in helping treat patients. I am completely for personalized medicine but I am not sure what I think a company making money off analysis of risk factors as opposed to finding a cure. Yes this will help in getting the right women early screening and allow for early detection. But does it help prevent cancer?  Not really. Does it help determine the cause of cancer? No. Does it prey on the fears of women who are concerned about developing breast cancer? Possibly.