Writing, Summer From Hell
Tuesday August 19th 2014, 4:04 pm
Filed under: Family, Health (Not Cancer), Leukemia

I’ve written a tremendous amount in my WordPress (the Internet software that powers my blog) over the past year, but I’ve only posted a tiny fraction of it. What always seems to happen is that I start writing about an important current event, but I don’t quite finish those entries. I have every intent to finish them, but by the time I get back to them, they don’t seem nearly as important to me as what’s going on more currently (currentlier?). There’s always something more current and more important-seeming that I start writing about and don’t quite finish. I’m going to do my best to write shorter blogs so this doesn’t keep happening.

This has been a bad year for me. It started with lots of fruitless investigation into my tactile hallucinations. Even in the nation’s supposed best medical center, the Mayo Clinic, no one had any answers for me. I have a small, unfinished entry about the Mayo Clinic that I’ll post eventually.

Before that though, I’d like to write about this past summer. It’s been awful, and not because of my weird hallucinations, but because of bad doctors and bad practices. And an unexpected death in the family.

1) I finally narrowed down my rolodex of doctors to a number I could count on one hand, which was a great feeling. I knew all my doctors well and I trusted them. I had one gap in my treatment, though, which was a primary care physician (PCP), to both take care of me when I randomly became ill and to be the quarterback who kept my other doctors on the same page in treating me. Lo-and-behold, one of my trusted doctors had a great PCP, who she insisted would be great for me.

2) I took her advice and made an appointment with her PCP, and I loved him. I felt he immediately understood my weird circumstances and saw he was very excited to coordinate with all my other doctors about how to go about trying to take on my hallucinations. I also found out that he was an addiction specialist. I told him about my trials and tribulations with Methadone.

2.a) I’d been put on 200mg a day of Methadone to treat my pain during my hospital stay at the beginning of chemo in early 2008. In 2009, still on chemo, I weaned down to 10mg a day over ten months, but I suffered massive withdrawal when I tried to wean from 10mg to 7.5mg a day. I was told I couldn’t go through withdrawal during chemo because it was too much strain on my already weak system, so I had to wait until after chemo to get down to 7.5mg.

With no help from the pain management clinic I was seeing at the time (they were supposedaddicted to Methadone–meaning I never took it in a way that wasn’t ordered by a doctor. I followed my doctors’ instructions by taking it to a T and never abused it. I was dependent on Methadone, though, which means that I did everything right by following all the right directions, but my stupid brain still thought it needed it–even though I had no desire to keep taking it.

4.a) Brains are majestic in what they can do and the amount we don’t understand why they do what they do. But they’re also stupid and gullible in lots of ways.

5) Instead of weaning me off the Methadone, my PCP took me off of it cold turkey and put me on OxyCodone. He did this to fool my brain into thinking it was still receiving Methadone. I was then, after two weeks, to go cold turkey on all opioids (which would just be OxyCodone) for a weekend, and then I’d be switched to another medication for six months, called Suboxone, that would help me get through any and all withdrawal.

6) For the first few days after my switch to OxyCodone, my doctor called and adjusted the amount I was taking. He did a lot to make sure I was comfortable, and this made me feel confident that I was in good hands. Then the calls stopped. And I ceased feeling comfortable.

7) I called his office and found out that he was out of town for four weeks. This was a total surprise to me, and I had no idea what to do. His practice has no other doctors, though it does have one physician’s assistant (PA).

8) Their system of communication is also very odd. Everything, from emergent questions to prescriptions went through the receptionist and she decided if they were worthy of sending on to someone else. I understand that when you’re managing a large number of drug addicts, a doctor probably needs a firewall, someone to make sure the calls legitimately need to come through. This non-medically trained receptionist is just not the right person to do that.

9) I got a message through to the PA about my pain and discomfort. She prescribed a medication to help me.

10) The pharmacist called a short time later and said that the medication I’d been prescribed could kill me.

11) We got notice back to the receptionist, who let our message through to the PA, who prescribed a different medication.

12) The pharmacist called again and said that the new medication would KILL ME EVEN WORSE (or probably something like, “it could be even more deadly,” but I like my way of saying it better). The pharmacist could not get through the firewall to talk to the PA about these deadly meds she was prescribing to me.

13) Between the bad prescriptions, the receptionist not letting the pharmacist talk to the PA, and my doctor being out of town for four weeks, it became apparent no one was really running the show. No one was managing my comfort, yeah, but much worse, no one was going to get me off the OxyCodone in two weeks as had been planned.

14) We turned to the doctor that had recommended my new PCP, who had his personal phone number. We were able to get in touch with him. He was out of the country for four weeks, but said he could coordinate from there.

15) Through various emails that were exchanged, it became clear that he could do some things from afar, but not nearly enough.

16) Unrelated to the medical situation, my grandma passed away very unexpectedly during this debacle. It’s still sad and tragic for my entire family. She was an amazing woman. It was hard managing my health and her loss at the same time. She deserves her own entry so I’ll wait to write more about her until it’s just about her. Suffice it to say, I miss my grandma a lot.

17) When my PCP finally got back to town, I had been on OxyCodone for five weeks.

18) OxyCodone is much more addictive than Methadone.

19) As if no weird trip out of town without telling anyone had happened, my doctor ordered me to go off OxyCodone the weekend after he returned.

20) The problem was that I had become very dependent on OxyCodone over five weeks and my stupid brain really didn’t want me to go off all opioids cold turkey. I think my brain may have also noticed that it had been tricked about that whole going off the Methadone thing around this time, so it was pretty angry with me.

21) I did it. I went off the OxyCodone. My brain immediately made my body go haywire. My pulse dropped radically, down to a level that I couldn’t take any of my anti-tactile hallucination medications. When I tried to sleep (the time my tactile hallucinations come on), my hallucinations had changed into something absolutely terrifying. They’d been bad before, but nothing like this.

22) The hallucinations involved my entire body being converted to spiky metal micro-structures. There were metal spiders sewing layers of small, painful metal objects to every inch of my skin. They were also weaving different parts of my body together. Keep in mind, these are tactile hallucinations, so I can’t see or hear them, I can just feel them. There was no way to brush them off or to stop them. They just kept building metal structures all over me, piercing my skin, and sewing tender parts of my body together. It was the most pain my brain had ever put me through–my body was racked with unbelievable pain even though the pain was an illusion created in my brain.

23) The tactile hallucinations stopped being restricted to when I was laying bed. They were happening whenever and wherever I was, no matter the position.

24) I couldn’t sleep during this at all. It was more than miserable. It was torture. It lasted three nights and by the third night, I wasn’t sure that I was going to survive. It was a terrible feeling in the pit of my stomach and something I didn’t want to think about, but couldn’t get out of my head. Sleep deprivation and torture, even if they were coming from my own brain, put me on the razor’s edge.

25) My parents switched turns staying up with me. They had to switch because I caused whoever was with me massive sleep deprivation. There wasn’t anything I could really do other than holler and whimper. I have no clue what I’d have done without them.

26) On the third day, after three nights of hell, which was a Monday, my pulse was a steady 40. This is called bradycardia for people that aren’t very fit athletes, and it’s very dangerous for anyone who’s not a very fit athlete.

27) My PCP wouldn’t put me on the new medication, Suboxone, that was supposed to help me with withdrawal unless my pulse was holding steady above 70. I also couldn’t take my hallucination medications under these circumstances. My PCP told me to go to the ED (ER).

28) The hospital played with my liquids and found that pumping me full of them made my pulse go up. They gave me some of my hallucination medication (since my hallucinations felt like they were all over me even in the hospital), which made my pulse drop again. They finally got it figured out, though I’m not really sure how.

29) By the time I was leaving the hospital, my PCP had left his office for the day.

30) Another night of hallucinations, however, my pulse went up high enough at one point that I could take one of my meds. I fell asleep, even as metal spiders were crawling all over me and I got five hours of sleep. It was the sweetest five hours of sleep I’ve ever had.

31) The next day, we went into the PCP’s office at 7:45 AM so we could get me on the Suboxone. A lot of stupid stuff happened. They asked where my Suboxone was, as I was apparently supposed to bring it with me, despite never being told to do so. In fact, I didn’t even have a prescription for the stuff. When my normal pharmacy said they didn’t have enough to fill the order, we called around to other pharmacies until we found one that could fill the whole order.

32) It turns out Suboxone is very expensive without insurance and that insurance needed prior authorization to pay for the drug. We were told to just buy some out of pocket and the office would get the prior authorization taken care of. Paying out of pocket even for a few doses was extremely expensive. And, for whatever reason, the receptionist took four days to even initiate the prior authorization request.

33) By that time, I needed more, so we just bought it.

34) My PCP once again started making contact every day, adjusting the amount of Suboxone I was taking, with the goal of getting me to a place of feeling like I hadn’t gone cold turkey on OxyCodone.

35) I felt very sick to my stomach taking the Suboxone. With a little research, my mom found that the Suboxone I’d been prescribed contained a second, inactive drug called naloxone. Naloxone is known for causing stomach aches, though that’s not it’s main purpose. It’s main purpose is to keep patients who are taking Suboxone from getting high on heroin.

36) I guess it worked, because I didn’t get high on heroin. The proof is in the pudding, even if I didn’t taste any of the pudding.

37) We talked to my PCP about the naloxone. This is where I realized I was being treated as an addict and not a dependent. I had no need for naloxone, as I never did or sought to do heroin. He very reluctantly prescribed a version of Suboxone without naloxone in it.

38) We went through the insurance pre-approval baloney again. The receptionist asked why we’d need it, as if there hadn’t been a problem with it before. Again, we ended up buying the expensive drug out of pocket.

39) Communication stopped. I heard nothing from my PCP for three weeks.

40) Between all this (1-39… I wrote more than I meant to), I decided to switch to a different doctor.

41) This new doctor was recommended by another of my trusted handful of doctors. This new doctor is not a PCP; he deals exclusively with addiction. It took some convincing, but he eventually came around to understanding that I did not want to go back on either Methadone or OxyCodone.

42) The new doctor immediately started weaning me off Suboxone.

43) It turns out Suboxone is an opioid that’s more addictive than OxyCodone. And my PCP was going to have me on it for six months. You can’t see it, but I’m throwing my arms up in total confusion right now. You’ll just have to trust me.

44) The new doctor and I worked out a wean schedule for the Suboxone. It was supposed to be done by the end of August, though the symptoms would likely last through mid-September. This was fine with me, because I just wanted off all these damn opioids and I just wanted to be done with the main focus of my summer being weaning off difficult-to-wean-off-of medications. It was also nice to have an actual deadline for something–the last time I had one of those was my countdown to being off chemo.

45) Everything was going fine, the schedule was working fine, until one night after I’d gone down a dose and I started having audio hallucinations. I was hearing voices in my bedroom. It was freaky.

46) My new doctor told me to go back up a dose on the Suboxone and that we were going to slow the wean down. Although this destroyed my deadline, I’m ultimately happier not hearing voices in my room at night.

47) That being said, I’m still experiencing lots of withdrawal effects and most days I simply do not feel well at all. No audio hallucinations, but a load of other bad feelings. I feel like I’ve had my summer stolen by negligence and “professionals” that just don’t care.

48) We’ll be playing the wean by ear from now on. If I feel I can go down, I will. But it’s going to be slower. I have a feeling it will last through much of September.

49) I wrote way more than I wanted to, but it’s good to have gotten this all off my chest.

Shorter next time, for sure,


2 Comments so far
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I stand eternally amazed at how much you have had to endure, have been able to endure, and yet also the breadth of wit, talent, charm, humor and insight you pour through those writings that you do share, amidst all you endure.

Bravo, sir. And by god so I hope things take stronger positive turns for you soon (and like to believe they will).

The Levin-ed bread of life always deserves to rise!

Comment by Matt Gallo 08.19.14 @ 4:58 pm

Thanks as always, Matt. I always appreciate your support.

Comment by Reid 09.02.14 @ 11:33 pm

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