Off-Label Uses

Sometimes people use a medication or a health care product to help with things besides the ailment or condition that the product was intended to address.  This off-label use is often done out of necessity, when things recommended by health care professionals or others have not solved the problem.  It's more of a last resort, a whatever-it-takes type of effort, or sometimes just a belief in a wives' tale or a carrying on of tradition than a science project.

Vicks VapoRub ointment is one product that has been said to work for treating things other than what its label says it treats; a couple of its off-label uses are treating toenail fungus and repelling mosquitoes. 

Proctor & Gamble, the company that makes Vicks, has a disclaimer on their website that says their product "can be used for the treatment of cough associated with the common cold" but that they "haven't tested, nor has the FDA approved, Vicks VapoRub as a toenail fungus treatment" and, therefore, they say, it is not recommend for the treatment of toenail fungus.  I think there are lots of people, though, who swear that Vicks alleviates them of that condition.  Not having fungus-y toenails (yay for me!), I haven't ever tried using it for that, but I have tried it a couple of times for keeping mosquitoes away when I've run out of Off! and it seemed to work just fine for that.

One of my sisters has yet another off-label use for Vicks Vaporub: she puts a little bit of it under each of her eyes whenever she has trouble sleeping.  She's done that since she was a teenager; she says the fumes it gives off sting her eyes, which forces her to keep her eyes closed, which eventually causes her to get bored enough to go to sleep.  I don't see any kind of warning about that on the Vicks website, so I guess it's an ok thing to do, and, as anyone who has ever suffered (and I do mean suffered) from insomnia can attest, at a certain point in a sleepless night, it's anything goes/whatever works to provide a little shut-eye before the sun comes up.

When I was running competitively a lot in high school, I sometimes tried to emulate some of the rituals that my dad had surrounding his running routine. One thing he did that I started imitating then was taking a couple of swigs out of the bottle of Mylanta that we kept on the door of the fridge as soon as I came in from a strenuous run.  I didn't know why he did it; I just did it because he did.  Many years later, I happened to think about how we used to do that, and I asked him why he did it back then.  "When you run hard, most of your blood goes to your arms and legs instead of to organs like your stomach, and so a hard run can make you feel sick to your stomach, and Mylanta helps with that," he told me.  I kind of half-laughed and asked him he'd ever tried any other remedies for the same problem, and he said, "Well, I guess I've tried beer, but I'm not sure if that helped my stomach or if it just tasted so good after a hard run that I didn't care if my stomach hurt."

I don't think the company that makes Mylanta has looked into billing it as a special after-workout remedy for runners, but maybe they should.  I know of another off-label use for it that they could advertise, too: when my oldest child was a baby, I worked in a nursing home, and one of the residents there told me that I should try using a liquid antacid like Mylanta to treat diaper rash.  "Just put some on a cotton ball and dab it on the rash," she told me.  Later, when I tried it, I found out that it worked better than any diaper-rash ointment I'd tried.  I ended up telling a friend of mine who was also a new parent about it; luckily, she asked me for clarification of how it should be used before she tried it because she later told me that she first thought I'd meant that an oral dose of it should be given to the baby. 

One thing that has surprised me about the process of grief has been the way the emotional pain often flows over into physical pain, and one way that that has occurred for me has been in the form of back pain.  Before I'd really realized what was causing the pain that plagued me night and day, I had been attributing the pain to poor posture or just to having slept  wrong, and I tried the usual treatments - ice, heat, stretching, pills, chiropractic.  Nothing worked, at least not for very long.  Finally, after reading about the grief process, I came to the conclusion that my sorrow and the other emotions tied up with the whole process had sort of settled into the joints and the muscles affecting my back, and I told myself that, like a lot of the intense emotional pain I was feeling at the time, I just had to ride it out until it got better on its own in time. In the meantime, though, especially at night, I ended up calling on my old running training buddy, Icy Hot.  The weird first cold-then hot numbing action it has helped me to relax; some nights it was the only thing that allowed me to go to sleep, essentially making it yet another product with an off-label use, this time to curb the often almost-debilitating pain of raw grief.

Trying to Fix Grief

I'm a "fixer;" I like to fix things.  Maybe that's one reason I'm finding the grief process to be so tough - because there's no righting this situation.

Not that I haven't tried.  I went through with three different counselors in search of a remedy not long after Dad went on ahead, each of whom didn't specifically deal with grief; I liked all of them at first precisely because they seemed to have a linear approach to how they laid out their sessions - my impression was that they were "fixers" too, and that seemed like a good thing to me at the time. 

About halfway through my second session with the first counselor, she asked me how I defined myself after the loss of my father.  What the hell does she want me to say? I thought, and I felt as if I had been sucker punched.  I felt like I was afloat in a sea of sadness on my best days during that time, and on many of the other days I felt like I was drowning.  How do I define myself???  I had absolutely no idea, and I knew it would be a long time before I could withstand even the thought of redefining myself without my dad here with me in this world. And so, without answering, I thanked her for her time and walked out the door.

Two sessions in with the second counselor, she leaned back in her chair, put each of her fingers together with each of the matching fingers on the opposite hand so that it looked like she was about to start doing the hand-gesture that goes along with "Itsy Bitsy Spider," and said, "I think what you need to do is to realize that you were lucky to have been given the time to say goodbye to your father."  Then she just sat there looking at me expectantly, as if she thought that some giant epiphany was going to come to me in that moment.  Anyone who has ever been through the death of a loved one after that person has had to suffer through a terminal illness would not find comfort in that statement, particularly at that point in the grief process.  Without a word, I stood up and walked out.

I waited a couple of weeks and then, mainly because I was concerned that I still wasn't sleeping much at all, I tried again.  About 45 minutes into the first session with Number 3, I got "It's already been six weeks since your loss.  You should ask your primary care physician to write you a prescription for an anti-depressant."  The message I took from that was that I should have already moved on, that six weeks was plenty of time to have moved through the grief, and that I should get over it, and that's really the last thing I wanted to hear.  Strike three.

Luckily, through a friend of a friend, I found my way to a grief counselor about six weeks after that, and that was a different ball game all together.  That made me realize the lack of training and knowledge in the area of grief that the other three had.  The grief counselor let me talk about my experience and my feelings; she had posters on the walls of her office that said things like, "To live in the hearts we leave behind is not to die" and, my favorite: "Every grief needs a thousand tellings."  

More than one physician, when I've gone in for a check-up or for a minor physical complaint and then when I've brought up the subject of my struggle to try to figure out how to cope with the loss of my father, has offered to prescribe medication as a solution for grief.   As society does so often these days, these doctors have seen grief as a sickness, as an imperfection, as something that needs to be "gotten over."  I didn't want to be on medicine.  I know it's something that's helpful or even necessary for some people, and I told myself that I wouldn't completely rule it out as an option for myself on down the road -  but I instinctively realized that to numb the feelings associated with the loss of such an important person in my life at that point would not only put the feelings associated with grief on hold temporarily but also would likely numb me to the goodness in my life, and I knew that the latter was all that was keeping me going.  As I had learned from my dad, I mustered all the courage I could and forged ahead, for the most part with the belief that someday, somehow I would find a way to make it through.  Because one thing that I've learned about grief is that not only is there not a "quick fix" for all the things that come along with it, but there isn't really a "fix" at all.      

The Sandman Has Left the Building

 

When a person gets a splinter in his hand or foot, pain comes from the foreign object as well as from the swelling of the tissue around it.  A similar thing happens with a brain tumor in that the surrounding tissue in the brain swells, which can cause a variety of problems other than just pain, including an increase of neurological symptoms and seizures.  This swelling, or “edema,” is treated by steroids, usually given in high doses for a long period of time.

Like most of the medications given to cancer patients, with this type of treatment comes the potential for side effects, many of which in turn require lifestyle changes and/or the addition of other medications.  For example, steroids like the Dexamethasone that was given to my dad can cause problems like severe heartburn, swelling of the face and extremities, muscle weakness, headaches, and extreme difficulty sleeping.  The risks were even greater than usual given the dosage at and prolonged period of time during which my dad had to take this type of medication, which is 30 times more potent than the naturally occurring hormone cortisol and 5 times stronger than the most commonly prescribed steroid prednisone – and Dad was on four times the normal dosage of it. This powerful steroid, coupled with the chemo which had side-effects like nausea, a decrease in appetite, extreme fatigue, muscle weakness, and decreased immunity, among other things, contributed to the ongoing struggle of trying to provide comfort while waiting for the treatment to affect the cancer cells. 

And herein lies the dilemma that we faced, one that is faced by every cancer patient and his or her family, especially in cases when the treatment is not considered to be a potential cure.  From my perspective, when the goal moves from a cure to providing comfort through symptom relief and buying time, the decision of which remedy to try and, in cases like ours, which medical professional to listen to, becomes even more complicated. 

Throughout Dad’s illness, he had problems in several areas that affected his mobility, independence, and safety.  One of the most pervasive obstacles, though, was the chronic insomnia, which, oddly, also came with persistent fatigue.  Dad talked a lot about being so tired and really wanting to be able to go to sleep.  Nights were the worst for him as that’s when he expected and was expected to sleep and that’s when his inability to follow a typical schedule really seemed to bother him the most.  Every day he had such Big Plans to sleep that night, and every night he just couldn’t do it.  It wasn’t as if he had his nights and days mixed up, either, like people sometimes do; except for the couple hours at a time of deep, pain-medication-induced sleep and a few short naps here and there  – he just really did not sleep. 

Because he needed supervision at first and assistance later to get up to go to the bathroom or to get medicine or something to drink due to the lack of sensation on his left side and problems with his balance and later weakness, at least one of us was awake with him around the clock during the entire time he was sick.  We took turns sitting with him and lying in the bed with him.  If we turned out the lights and the room got quiet for a minute, he would sometimes say, “Hey!  Is anybody even in here?” to get our attention.  He seemed to really need companionship all the time, for security and safety and just plain old conversation.

The tricky thing about taking such a powerful steroid over time is that it eventually takes over and shuts down the body’s production of the naturally occurring hormone that it is at first just supplementing.  That makes it life-threatening to have too drastic of an adjustment in the dosage of the drug.  The dosage has to be closely monitored and medically supervised for just this reason.

We were told by doctors that the steroids helped to prevent seizures (although he was also on an anti-seizure medication), to decrease headaches (although those persisted and then worsened), and to keep the remaining tumor from compressing other brain structures.  Of course, every time the topic of taking steroids came up in front of Dad, he chimed in and said he hoped he didn’t get caught for doping when he finally made it to the Olympics or the Tour de France.  We explained to him several times that it was a totally different type of steroid, but he preferred to pretend that the type he was taking was going to make him stronger, and, after awhile, we figured it was a good way for him to “psych himself up,” as he liked to say.

I was glad that he was being given a drug that targeted all of those problems, but I grew to hate the side-effects for him, especially the muscle weakness, the sleeplessness, and later, the suppression of his immune system that I think was a big part of how he got so sick at the end.

Every chance we got to talk to a doctor about Dad’s case, we expressed our concerns about the insomnia and the resultant fatigue.  We were told by the neurosurgeon in the hospital just after Dad’s surgery that the dosage would be decreased over time under the supervision of the oncologist.  When we met with the oncologist in his office while Dad was in rehab, he wanted to wait until Dad was discharged from Rehab.  When that happened, the oncologist and the rehab director wanted to wait until we consulted with the neuro-oncologists at the Brain Tumor Clinic at Duke.  The neuro-oncologists recommended decreasing the dosage after the second dosage of chemo three weeks later, but at that time his headaches had gotten worse and so the oncologist was hesitant to change the dosage and instead upped the pain medication which was supposed to help Dad sleep but didn’t.  He said we would look at a change in the steroids again at the next chemo appointment, to which Dad never made it because he ended up in the hospital with a life-threatening infection.  From there, he came home on hospice. 

I guess our optimism every day about the possibility of Dad being able to sleep that night was part of our Denial.  Or our Bargaining.  Or our Desperation.  One of the last nights he was in the ICU, my sister and her husband were with him, and he came up with the idea that if he had some sunglasses on he would be able to sleep.  The room was fairly dark anyway, but they were game to try anything that seemed like it might help him.  My brother-in-law had recently had Lasix surgery and just happened to have a pair of heavy-duty sunglasses with him, and he gave those to Dad.  Dad put them on and said, “This ought to do the trick,” but again, no luck.  

The one good thing though that came from his 70-plus nights of very little to no sleep was that my mom, my siblings, our spouses, the grandchildren, and I all got to spend more time talking to him.  My sisters and I agree that we spent more time just hanging out with him and talking to him during the time he was sick than we had since we were kids.  He couldn’t really focus on TV or reading for very long, and even music irritated and/or distracted him, and so we just talked.  So I guess in a way I should be grateful to the steroids for increasing the amount of awake-time I got to spend with Dad, but, really, it’s Dad that I am grateful to, for sticking it out, for being such a warrior, and for all those late night talks.