Thursday, September 16, 2010

The Importance and Responsibility of Being Your Own Advocate

TMI Warning light on. Just sayin'.

Yesterday, I mentioned the ouchy hurty parts of this healing process and chemo hangover. OH lordy did I not know what was in store for me this morning.

While I was in the hospital, about two days before my transplant, I started my period. Yeah, fucked up, I know. Because my platelets and hemoglobin were very low ( a recipe for disaster when you're bleeding for several days in a row) AND it's just cruel to have your period and chemo at the same time, my team gave me a hormone shot called Lupron to stop my cycle for that month and the following two (three months total). Awesome, right? Uh, I thought so too. Yesterday I began to notice what I thought was some breakthrough bleeding, which is expected with any hormone treatment, and while I was annoyed, it was no big deal. Well, this morning, at 5:27 am to be exact, I shot upright in bed with the worst abdominal and lower back pain I have ever experienced in my short life.

At first, I thought maybe this was some residual intestinal nonsense from the chemotherapy (something they told me could happen), but I quickly realized that this pain was very different and was very clearly NOT that kind of cramping. In all hospitals, and most doctor's offices, they use a "pain scale" of 1-10 to indicate the intensity of pain a patient is feeling, 1 being very slight and 10 being "I think I'm going to die". This morning, as I sat doubled over in the bathroom, clutching my head and dry heaving  into the trashcan from the pain, I was at an 8. That's crazy high. This was, without a doubt, the scariest pain I have ever experienced. There was no doubt in my addled mind while this was happening that I was a) going to need to go to the ER and b) having a miscarriage or c)bleeding internally and was going to die. Yes, I was in so much pain, like, contraction pain, that I convinced my groggy self that I was having a miscarriage. Um, righto Laur. In hindsight, that's pretty stupid, but trust when I say this pain would have convinced any woman that this was a possibility.

After a half hour of this, I began to realize that I was holding my breath and bearing down (two not so good things to do in this situation) and managed to calm myself down enough to begin to start a slow deep breathing pattern as the waves of pain came. This helped considerably. Once I got myself to a point when I could stand up, I got in the shower (to get ready for clinic), which was quite difficult, and then wrapped myself in towels and curled up in a ball child's pose style on the bed crying and moaning. P got a pain pill and an anti-nausea into me and whisked me off to my clinic visit.

The first thing I told the nurse, Jennifer, as she hooked me up to my magnesium IV was the excruciating pain and the continued horrendous throbbing I was feeling, and then requested to speak to the PharmD and Nurse Practitioner about something to alleviate the pain. She expressed her sympathy (duh, she's a woman) and scurried off to speak with them. After a few moments, Jennifer returned and said that the PharmD did not want to prescribe anything, muscle relaxers in particular, because he did not feel that they would work for this kind of pain. Ok, fine. But I still want to speak with him face-to-face. An hour or so later, during their rounds, the NP and PharmD stopped in and kicked off the conversation by addressing my pain, a good thing (you listened!). After explaining the pain, giving my pain scale number and expressing that this should NOT be happening because of the Lupron, the PharmD dropped this lovely bomb: "Yeah, we've been seeing this more and more in younger patients like you. The Lupron just doesn't seem to work". Really? Now is the time you choose to tell me this? And exactly WHY haven't you found a better alternative? Jeebus. The PharmD then said, and I knew this, that an NSAID pain reliever, like Motrin or Midol, would be the thing to really work on this however I am not allowed to take them. Then, THEN he says "I just don't think that muscle relaxers are going to work on cramps" to which the NP made the most AMAZING FACE EVER and says "I disagree with you.". Not wanting to get in the middle of that awkward mess, I sat silently as they argued about what could be done to help: the NP suggesting the muscle relaxers to try for a day or two and the PharmD insisting that I should just take the pain meds I already have (which weren't working on this pain, something I let them know). Finally, they looked at me and said "What do you want?". Well, what do I want? I want to NOT BE IN PAIN because it it BULLPUCKY that I should have menstrual cramps on top of everything else. I want you, the health care providers, to make a decision in my best interest. If I am going to be a compliant and responsible patient, I expect that my health care team will reciprocate with compassionate care. My response was that, if there was no reason why a muscle relaxer would damage my cells or interact with any of my medication, it was worth a FUCKING TRY (ok, I didn't say 'fucking', but trust that I was forceful). The PharmDde Lima does not like to prescribe additional "unnecessary"  meds like this. Now, and this is my real point in this post, if there is no compelling reason why the addition of this medication would harm me, and a chance that it would actually HELP me, who are you to tell me that I need to sit in excruciating pain simply for principle? It is clear to me the reasoning behind Dr. de Lima's stance, there are many patients on large amounts of medication which are not all necessary AND muscle relaxants can be hazardous in terms of drug interaction and fall risk in many patients. Totally get it.  However, I am not one of those patients. Also, and I said this to both of them, Dr. de Lima has never menstruated. Fair? Fair. Remaining in distressing pain is not conducive to proper healing for my body. It is not my interest to stay on this drug for a long time, or to use it recreationally, so it appears clear that a chance at alleviated pain is a good thing. The NP and PharmD agreed to write the order for a muscle relaxer but ended our chat by saying that 'the boss' is going to take their heads off. Alright, look. If you are anticipating this being an issue, have Dr. de Lima actually call me and we can address this together. The last thing I am interested in right now is keeping my health care team happy in the workplace. Your primary interest should be in what is best for the patient.

After two years of interacting with health care providers who run the gamut from very liberal in the administration of medication, to those who require some more...nudging to convince the necessity of certain medications, I have learned a very valuable lesson. It is so damn important, especially for young patients who (and I'm only speaking from personal experience) often feel in an inferior position to their doctors (because of age or education),  to speak up for yourself and your best interest. I am NOT saying that you should demand every pill you think might help, or things that you read on the internet  or question your doctor's every move (unless you go to quack, and at that point, what the hell is wrong with you?). What I'm saying is that there is just no reason to be miserable due to side effects if there is something available to help, within reason. It is worth saying again: pain is not conducive to healing. My advice (if it is worth anything to anyone, which it probably isn't) is to be a smart, informed and active patient. Again, I am not saying that it is appropriate to question everything, these people are the best in the world at what they do and know far more about this than I ever will, however, I know when something isn't right in my body. I know when something isn't helping me heal.  Often you will hear about the doctor 'God complex'. This has not really ever been my experience here at MDA, or most anywhere else for that matter, but I can see how that happens. There is also, I believe, the 'sheep complex' in patients. Do whatever they tell you and don't question. Don't research because you'll just scare yourself. Don't bug them with questions or after hours calls when you are having problems. Be embarrassed to report side effects. No. Fucking. Thank you.

They gave me the meds and they have helped quite a bit. While the pain has not subsided completely, there is now no pain in my lower back and I am no longer clenching my abdominals down, causing more pain. So, that being said, did the meds really work completely on these cramps? Kind of. Have they offered a bit more relief and at least the ability to function this afternoon? Oh yes.

The bottom line (especially to you, young adults): stay involved, stay smart, stay POLITE, stay informed and stay persistent. They work for you and YOU are number one. No other body is like your body. Speak up and do it NICELY when you feel like something isn't right and don't be afraid to talk about the gross stuff. It's only gross to you because you don't talk about it a billion times a day like these folks do. Being an advocate for yourself is the most important role you can play when interacting with the health care community. It is a responsibility and a duty. Will your suggestions and requests always be correct? Hell no. I'm not a doctor, after all, but I do have a uterus and that was some bullshit.

Tonight, heating pads and bed rest abounds. Tomorrow is a new day, my friends:)

 Much (relaxed) love.


  1. Keep talking girl. Your very best advocate is you at this point. No one knows what you are feeling if you don't tell them and tell them and tell them. It may take come convincing sometimes but you have to persist. Feel better. Love you, Nan

  2. Sending love your way girl. I think this post is right on the money and it was worth something to me and I will very much take it to heart. Hugs.

  3. 11111111111111111111. (the clapping symbol i learned from craig.) I just can't beLIEEEEEEVE the craziness of cramps with all you've been through.... that THIS should double you over actually makes no sense and i applaud you for standing up, speaking up, keeping up, and getting your needs met. all done with respect. here's what's great, when this blog beomes a book, it contains wildly important words on life, love, medicine, ... MORE,.... an incredibly powerful self-help/"how to" kinda deal. KEEP WRITING, hon! sending love from the east daily. xo

  4. Totally believe ,as you know, in being your own advocate.
    Sorry that you are in pain and and happy that there is some relief.
    Keeping singing your song.
    Much love

  5. Laura - a very important point you make, and one that will serve you well -always. You are your own best advocate! All anyone can do (medical practitioners included) is give you an opinion. That's it. I've had the experience of seeing 5 docs, showing them the same films & test results, and hearing 5 different approaches. Girrrrl, stick to your guns, as they say. You are doing GREAT!! :)

  6. There was a lot of truth spoken in this entry, especially that it is cruel and unusual punishment for you to have to put up with your period. My favorite, however, remains:
    "Dr. de Lima has never menstruated."
    Intensely painful cramping is something that only women (and not even all women) can understand. Hope your cramps go away soon. I'm sending you mental chocolate. :)
    <3 Heather