I don't like it when I am not given all the information I need to do my job, make informed decisions, help my kids, or you know, understand why I am all the sudden unable to eat, sleep, or function as a human being in any sense of the word.
But that is exactly what happened to me this past week. And it sucked - big time.
As you know, I went to MD Anderson for my 6 week follow-up in February. I had 3 days of packed doctor appointments, including my pain management doctor, who I like very much. I do want to note that he is a wonderful doctor and has helped me tremendously with some really horribly pain during my cancer journey. BUT, this is the second time he or his staff failed to give me all the pertinent information. The first was when I initially went on methadone in August way back when my mom and sister were with me in Houston the very first time. I still had a huge tumor growing in my mouth and was spitting up blood regularly. Ugh, those memories are so awful. Anyway, the pain was obviously horrible, so the doc, knowing everything I was about to go through as well, put me on methadone as a long-term less addictive pain killer. What he did not tell me was that it takes several days for methadone to build up in your system. He just said, take this instead, so that is exactly what I did. I stopped my previous medication and took methadone. Which immediately led to me writhing on the bed in intense pain for probably a day (? I was out of it and have no sense of time back then) until my mom yelled at them on the phone and found out I was supposed to take both medicines until the methadone built up in my system.
Gee, that would have been super nice to know. Thanks.
Fast forward to February 22nd and I am happily talking with the doc about my lack of real pain (I no longer have "pain" in my neck and mouth, it is more just discomfort - it is hard to describe - it feels thick and stiff and weird). We were all excited, and he gave me a slow plan to wean off the medicine - taking it down in gradual increments each week until I was down to none. Yay! I started that very day and moved from 3 does of 7.5ml daily to 3 doses of 5ml instead. Perfect. I was on my way to finally not having any outside crap in my body. Woohoo!
Things progressed nicely for several weeks and I was finally down to only 1 dose of 2.5ml a day. Right? Only half a teaspoon once a day - so fantastic! But then I started noticing a lack of energy, then a lack of appetite (which is a big deal since I am still way too thin and am trying to prove to different doctors that I don't need a feeding tube any longer). Then my body temperature started fluctuating unexpectedly at random times. I would be in the middle of a meeting at work and all the sudden I would be a block of ice to the point that I could not concentrate. Then, in a matter of minutes, I would be so hot I could feel sweat pouring (seriously) down my back. I tried to make light of it at work and to poor Brian who immediately noticed a difference, obviously.
Sleeping was the worst. I could rely on my tube since I had no desire to eat, and I was kinda used to not having energy, though I was sad since I thought I was doing so much better in that area. But the insomnia and temperature issues kept me tossing and turning all night. One night I remember changing clothes three times due to sweat but I was shaking uncontrollably with cold and did not actually sleep a single minute.
At that point, I knew something was wrong and contacted Houston and called out of work. I also texted my mom and older sister for advice. Cheri was the first one to officially figure it out, though I think I knew what was wrong the whole time, I just had no confirmation or information about it.
I have never done drugs in my life. I have never even held a cigarette (I know, I am weird, but no one has ever even offered them to me). I have confiscated drugs in my job and have been through training on how to spot a meth lab in a dorm room and make sure I am up to date on the popular forms of drugs to watch for it in my college students.
But I was certainly never going to go through drug withdrawal. It was something you see in movies about musicians with alcohol and pill problems. Not college town moms who work a full-time job and did nothing wrong other than the apparently horrible sin of getting cancer with no risk factors. I do recognize my privileged frame of reference, but the truth of it informs my experience.
So there I was reading the google articles Cheri pointed me to as I sweated and shivered under a blanket. My shaking fingers read the text on my phone and clicked off all the symptoms one by one on the list.
The doctor finally called me back and confirmed. I asked why no one told me to expect this - I do much better when I know what is coming, and he apologized and said some people don't experience it and it shouldn't have been so bad since we decreased so gradually. He also reminded me it could have been much, much worse if I had just quit cold turkey.
Basically, there was not much to do, I just had to get through it at that point. He said I could increase the amount I was taking to stave off the symptoms and in the meantime he could send me Valium or other medications to help, but I did not want to go backwards and I had already gone through several days and it supposedly only lasts about 10.
So I just spent the last 5 days at home, not working, not sleeping, not eating, and trying to hide my pitifulness from my kids. I watched a lot of TV and movies on my ipad (flashback to chemo days!) and read a lot. Distractions necessary. About 20 different people told me to get some weed and a few offered to literally bring some over for me at that moment. So sweet - I really have so many people who care about it me it is humbling.
Ultimately, I decided to grin and bear it the old fashioned way. I did not increase my medication at all and am now officially taking zero meds for the first time in, sheesh, I guess since my first biopsy in early June. The symptoms eventually slowed down and came less frequently. I began to sleep in more than 30 minute increments, and that helped my energy. My appetite slowly woke back up, and though eating is still a constant struggle, I am almost back where I was before. I am back at work and wearing a short sleeved shirt in my office - with no cold shakes or sweats! Whodathought?!
I am not actually sure it is totally over, but I feel mostly better. I still have some temperature issues and am not sleeping well, but definitely better.
I like 'better' in whatever form it comes to me these days.
My kids were confused, but I just told them that I was saying goodbye to all my medicines and it would make me sick for a few days. They were happy for me, probably remembering the sink covered in pill bottles, then liquid bottles, for months. I am not sure if I am thankful for the fact that they know how to handle a mommy who lays on the couch in pajamas for days on end or if that is sad. I'll take it as a good thing for now knowing that it will not be the norm for their memories of me. It is what it is, I hope to God it is over, and I write this to process my feelings, record my reality, and maybe help someone else who could be caught as unaware as I was.
Minor setbacks on the road to full recovery.
Surely that is all, now. Right? Right?