It seems like you can't help but trip over articles about the opioid crisis on the internet these days. Go to any major news site and they'll have one or more articles about the issue on their main page. Sometimes, the articles are puff pieces, with national statistics showing that things are still getting worse, and sometimes the pieces will be in depth articles about how the opioid crisis is hitting a small town or a big city near you.
I'm torn on the issue and what should be done about it. Part of my ambivalence is that I'm personally on a high dose of opioids, and I hate how the system for controlling them seems to err on the side of denying the medications to patients. For example, if I was going out of town and my prescription was due to be refilled on my second day out of town, I can't get it refilled early to accommodate my travel plans. There aren't any exceptions to this rule, unless your provider explicitly states on your prescription that it can be filled on the early date. And, prescribers are reluctant to provide early refills because it could be a request based on addiction.
Also, Vermont's most recent attempt to legally help out in this battle has imposed things that I think are burdensome to the patient. The first part of the law requires that I see my prescriber every 90 days. My doc would typically want to see me every six months, but the law now requires an appointment every 90 days. Secondly, if I have a prescription for a benzodiazepine (anti-anxiety drug) and an opiate, I am required to have a prescription for NarCan, the drug that can be used to counteract an overdose. It's unlikely that I'd ever overdose on this combo of drugs, but I am required to have the NarCan. I had already met my out of pocket max when I got the prescription, but it cost my insurance company money to cover that prescription for me and every patient who has both prescriptions.
Lastly, VT has an interesting tiered way of measuring how much medication opiate users are getting. Basically, they have a way to convert the dosage of any opiate to a morphine equivalent. There are tiers that define who can get a 7 day supply vs. a 30 day supply, and there are differences for patients who are considered opiate naive vs. patients who are regular users.
I am not considered opiate naive, and I've been on painkillers for about 30 straight months right now. When I started, I was taking 15 mg of oxycodone per day. That works out to a morphine equivalency of 22.5 mg per day. The threshold for a high dose user is 90 mg per day. Over time, I have progressed from 15 mg per day to 30 mg and then to 60 mg. When my dosage reached 60 mg, which is a morphine equivalent of 90 mg per day, I was officially classified as a high dose patient. Getting to that level didn't really change anything in how the law affects me, but it honestly didn't feel like I was on that high of a dose to be put in that high risk category.
In September, things took a turn for the worse for me. My pain levels escalated quickly in a period of week and the 60 mg of oxycodone was suddenly not enough. In retrospect, this was after a chemo had failed and I went through a period of time where I wasn't being treated at all. I believe I wrote about the terrible week that I endured, but here's a quick synopsis of how we got my pain back under control.
I woke up on a Monday morning in tremendous pain. I had been taking the oxycodone through the night, and I'd already met my dosage for the day by the time I got out of bed. I told my wife that I was going to call in sick and I'd consider trying to get an appointment to see my doctor. By mid-afternoon, I was feeling worse, so I went to the ED of a local hospital I'd had enough oxycodone that I had my son drive me to the hospital. They monitored me for a few hours, did an extensive check of my medical record to see my usage patterns, and after a few hours of doing nothing, they gave me a new prescription. It was for dilaudid, which they described as about 10% more potent than oxycodone in the dose that they gave to me. The prescription was only for a week's worth of medicine, and I was advised to follow up with my PCP.
The next day, I called in sick again. The new medicine hadn't made much of a dent in my pain levels. I contacted my primary care provider through the hospital's patient portal, and she luckily saw my message on a day that she wasn't working. She gave me her cell phone number and asked me to text her. She was in agreement that the dosage change was likely insufficient and she wanted me to be seen at a teaching hospital - either Dartmouth or the University of Vermont Medical Center. So, the next day, I called in sick again, and I had my wife drop me off at the ED at UVMMC. It was a slow day in the ED and I got some prompt attention. Their first goal was to get my pain under control. It took two doses of morphine to achieve that goal, but we got there. They ordered some imaging to see if my tumors had grown, to explain the new pain. The imaging showed that they had grown since August, but it was tough to measure how much. They were comparing a CT scan to an ultrasound, and comparisons between the two are not that easy to make, at least for the tumors I had.
By early afternoon, my morphine had worn off and this time, it took 3 doses to get it back under control. This concerned the doctor. Finally, he offered me two options. He could either take a guess as to what would work and send me home with a new prescription, or they could admit me and do a full pain evaluation with pain specialists from the oncology center. This was when the magnitude of the problem really hit home. He was telling me that things had progressed with the disease and that it made sense to do a more thorough pain evaluation. The way he presented it to me, it was clear that he expected that I would just take the prescription rather than being admitted. But, I wanted the issue to be resolved, and I chose to be admitted. By late afternoon, I was doing interviews with pain specialists. This included doing an Advance Directive, in which the doctor advised that she thought that I should decline CPR if things progressed to that level. This scared me again. Was I really this sick?
By about 6:00, I was transferred to an open bed on the cancer ward. The doctors had conferred and they started a new dose of pain medications right away. This time, I was going to add Oxycontin - the drug frequently referred to as "hillbilly heroin" to my pain management. The doses that they tired were 40 mg of Oxycontin every 12 hours along with my old dose of oxycodone - 10 mg every 4 hours for breakthrough pain. That night, I slept through the night for the first time in over a week. Even though the nurses were busy taking vital signs, I was able to sleep.
By early afternoon the next day, the doctors were comfortable that they had gotten the doses of the medicines correct and they suggested that I go home with the new prescriptions.
My new dose of oxycontin plus oxycodone was a total of 140 mg per day, or a morphine equivalent of 210 mg - more than twice the high dosage threshold. Three months later, I'm still on this same dose of medicine and it seems to be working. I am no longer driving. I gave up alcohol. I am fighting persistent nausea, which might be caused by the pain medication, but I need the pain medication. The alternative would be to try Fentanyl patches. If you've read any of the articles about the opioid crisis, which is how I started this conversation, Fentanyl is today's bogeyman. The problem is that Fentanyl is exceptionally strong - way stronger than morphine or dilaudid or oxycodone, and it's ending up in street drugs.
So, I'm now on a very high dose of medication. My primary care doc is on board with this and she writes my prescriptions every month. Things are working.
At the same time, I'm a high dose user. But, I have cancer and the system isn't preventing me from getting the medication that I need.
I was lucky that I got the appropriate level of care. How many others are given these drugs by doctors who mean well, but end up with the patient being hooked on the medications? How many people started out with a strain to their back and six months later they were hooked on high dose painkillers? And, how do we help those people once they've become addicted?
At a time where there is a big push to contain the costs of healthcare, not everyone can afford to go to a rehab clinic. There aren't enough rehab beds for everyone who needs treatment. How many people end up homeless and injecting street drugs because their well-intentioned doctor gave them too much pain medicine? CNN has an interesting article about a neighborhood in San Francisco that is worth a read.
I do believe that we need to treat rather than punish the people who end up addicted. My docs don't care if I become addicted. I will be on pain medications for the rest of my life. As long as I am safe (being smart by not driving, for example), it makes sense for me to be on these medications.
I feel a tremendous amount of sympathy for those who are addicted. It could have happened to me under the right circumstances. I want to see this problem fixed, but does the US have the will and the money to do it? How much would it cost us in insurance premiums to be able to offer quality rehab programs to everyone who needs one? What about people who are treatment resistant - people who need multiple trips to rehab and they still aren't clean. I have friends who have lost loved ones to this epidemic. None of them want to see punishment as the solution.
But, until we find the will to pay for treatment for everyone, I doubt that this problem can be solved. How much will the US tolerate before someone screams "Enough!"
Thursday, December 27, 2018
Wednesday, December 12, 2018
Little things going my way - an optimistic update
Lately, I've had some little things that are going my way, and as I stare at the big picture of the cancer and my treatments, I wanted to take a moment to acknowledge the good things that have been going my way.
When I started my last chemo and changed my pain medications around, I got connected to Matthew, a social worker at the local teaching hospital. He was assigned to me as my social worker, and immediately got to work seeing how he could help me. We agreed that I had a good support system at home and that I'm still able to take care of myself, but when I told him how my company had treated me, by reducing my role and my income so dramatically, he said he thought he could help us out financially, even though we still make well above the median household income in VT.
The first thing he did was get us a $300 stipend from the hospital to help cover some unexpected prescription drug costs. That offset some costs we encountered when my pain medicine regime was changed so dramatically in September.
In addition, he applied to a local charity on our behalf - a charity that helps people to make ends meet by helping with a household bill - rent, fuel bill, car payment, etc. It took some paperwork, but that charity ended up paying our car payments for a month.
Another little perk was a free gas card to help offset our commuting costs. It was just one tank of gas, but every little bit helps.
In addition to working with charities, another social worker was assigned to work with my insurance company because my insurance company declined to pay for one of my pain medications. I paid $550 out of pocket because I was afraid I'd end up being readmitted to the hospital without the medication. The odd thing is that it turned out I was covered for this medication, as long as I used the brand name medication and I had a prior authorization. But, that first time, they sent me home with the generic medication and my insurance declined to pay for it. But, after a lengthy appeals process handled by the social worker, my insurance company relented and they have now refunded me the entire amount of the prescription.
So, lots of little financial things have been going my way. Yesterday was even better though. My assigned social worker sent me an email, asking if I was interested in a free week in a high end rental home in Stowe, VT. Apparently, the week had been donated to a cancer fund raiser, and the person that won the auction donated it back to the charity, to be used by a cancer patient. My social worker suggested that I would be the ideal recipient for the week in the house. So, we are now trying to find a time that the property is empty. It looks like it will be in April, which could mean some late season skiing at Stowe.
If you add this in to the two fundraisers that my gym has done for my wife and me, I feel like we have someone looking out for us. In reality, it's just friends and, in some cases, charities that are funded through the kindness of others, but it's nice to know that these resources are out there. I know that there will still be tougher days ahead, but for now, I am feeling blessed, a word that I rarely use any more.
One quick cancer note: I had a CT scan done yesterday here in VT. It will be sent to Sloan Kettering and the doctors there will make the final determination on my next treatment. It is likely to be proton beam therapy at ProCure in NJ. My insurance has approved this treatment, and it has the potential to reverse some of the symptoms that have gotten worse in the past few months. The other alternatives are chemo, which I've been doing, or surgery, which my surgeon seems reluctant to do right now. So, now I wait to hear from the docs at Sloan Kettering before I book my next treatment.
When I started my last chemo and changed my pain medications around, I got connected to Matthew, a social worker at the local teaching hospital. He was assigned to me as my social worker, and immediately got to work seeing how he could help me. We agreed that I had a good support system at home and that I'm still able to take care of myself, but when I told him how my company had treated me, by reducing my role and my income so dramatically, he said he thought he could help us out financially, even though we still make well above the median household income in VT.
The first thing he did was get us a $300 stipend from the hospital to help cover some unexpected prescription drug costs. That offset some costs we encountered when my pain medicine regime was changed so dramatically in September.
In addition, he applied to a local charity on our behalf - a charity that helps people to make ends meet by helping with a household bill - rent, fuel bill, car payment, etc. It took some paperwork, but that charity ended up paying our car payments for a month.
Another little perk was a free gas card to help offset our commuting costs. It was just one tank of gas, but every little bit helps.
In addition to working with charities, another social worker was assigned to work with my insurance company because my insurance company declined to pay for one of my pain medications. I paid $550 out of pocket because I was afraid I'd end up being readmitted to the hospital without the medication. The odd thing is that it turned out I was covered for this medication, as long as I used the brand name medication and I had a prior authorization. But, that first time, they sent me home with the generic medication and my insurance declined to pay for it. But, after a lengthy appeals process handled by the social worker, my insurance company relented and they have now refunded me the entire amount of the prescription.
So, lots of little financial things have been going my way. Yesterday was even better though. My assigned social worker sent me an email, asking if I was interested in a free week in a high end rental home in Stowe, VT. Apparently, the week had been donated to a cancer fund raiser, and the person that won the auction donated it back to the charity, to be used by a cancer patient. My social worker suggested that I would be the ideal recipient for the week in the house. So, we are now trying to find a time that the property is empty. It looks like it will be in April, which could mean some late season skiing at Stowe.
If you add this in to the two fundraisers that my gym has done for my wife and me, I feel like we have someone looking out for us. In reality, it's just friends and, in some cases, charities that are funded through the kindness of others, but it's nice to know that these resources are out there. I know that there will still be tougher days ahead, but for now, I am feeling blessed, a word that I rarely use any more.
One quick cancer note: I had a CT scan done yesterday here in VT. It will be sent to Sloan Kettering and the doctors there will make the final determination on my next treatment. It is likely to be proton beam therapy at ProCure in NJ. My insurance has approved this treatment, and it has the potential to reverse some of the symptoms that have gotten worse in the past few months. The other alternatives are chemo, which I've been doing, or surgery, which my surgeon seems reluctant to do right now. So, now I wait to hear from the docs at Sloan Kettering before I book my next treatment.
Friday, December 7, 2018
The plan going forward
I spent Tuesday at Sloan Kettering. I started the day with a CT scan, but it was barely a scan. Just my lungs and done with no contrast. As it turned out, they should have done the full scan.
Next, I visited the radiation oncologist. His office was unhappy that there had been the mix-up with communications and that I hadn't gotten the go-ahead to do the radiation therapy despite the tumor growth. The doctor's comments regarding the communication were "It's not that hard". He said that it's imperative to get the radiation started as soon as possible, while there is still a window to do it.
From there, I had my vitals done and then we waited. And waited. We finally got in to see the medical oncologist. He was still fine with radiation as well, but he was also glad that we had started the chemo when the radiation got delayed. He wants me to stop the chemo during radiation, because the chemo hasn't been studied in conjunction with radiation. That reminds me that I need to cancel my next chemo appointment.
The surgical oncologist, who really coordinates my care, was last. And, we were running out of time to make our train home. He said that he was fine with doing the proton beam therapy radiation, but he wanted to see a CT scan first. So, I've got that scan scheduled for next Tuesday morning. So, we seemingly went 3 for 3, with everyone in favor of still doing the proton beam therapy.
I got home late on Tuesday night and Wednesday morning included a big presentation at work. I'm happy to say that the presentation went well, at least in my opinion.
From there, I headed to the hospital for blood work and chemo. I had my port accessed and blood drawn first. From there, it was a 45 minute wait for a chair in the infusion bay. The first thing the nurse said to me when I got to the infusion bay was "Do you know what your hemoglobin is?" I told her no, but I assumed from her question that it was low. It had been 9.9 only 9 days ago and it was down to 7.6 this week. They immediately began scheduling me for a blood transfusion.
The chemo went pretty well and I was back at work pretty fast. Yesterday, I spent another five hours at the hospital, getting two units of blood. I was hoping that the blood would make me feel better, but it hasn't. I'm guessing that it's the side effects of the chemo that are still keeping me feeling so tired.
I still have no appetite. I told my wife earlier today that I feel like I've spent my entire life looking forward to my next meal. Right now, I feel that if I just decided to stop eating, my body wouldn't care at all. My body would happily let me starve to death. It's no fun trying to force yourself to eat every meal, but that's where I am. Nothing tastes good, and I just have no appetite. It's honestly scary, because it feels like my body is quitting on me. Having an appetite is essential to survival, and I don't have one.
So now, some more waiting. The CT scan is Tuesday morning. Then, it will take a week to get it sent to Sloan Kettering. This time, I expect a rapid turnaround on the read, and permission to get to radiation treatments. Then, I have to start scheduling appointments at ProCure in NJ, the site for my radiation therapy.
Next, I visited the radiation oncologist. His office was unhappy that there had been the mix-up with communications and that I hadn't gotten the go-ahead to do the radiation therapy despite the tumor growth. The doctor's comments regarding the communication were "It's not that hard". He said that it's imperative to get the radiation started as soon as possible, while there is still a window to do it.
From there, I had my vitals done and then we waited. And waited. We finally got in to see the medical oncologist. He was still fine with radiation as well, but he was also glad that we had started the chemo when the radiation got delayed. He wants me to stop the chemo during radiation, because the chemo hasn't been studied in conjunction with radiation. That reminds me that I need to cancel my next chemo appointment.
The surgical oncologist, who really coordinates my care, was last. And, we were running out of time to make our train home. He said that he was fine with doing the proton beam therapy radiation, but he wanted to see a CT scan first. So, I've got that scan scheduled for next Tuesday morning. So, we seemingly went 3 for 3, with everyone in favor of still doing the proton beam therapy.
I got home late on Tuesday night and Wednesday morning included a big presentation at work. I'm happy to say that the presentation went well, at least in my opinion.
From there, I headed to the hospital for blood work and chemo. I had my port accessed and blood drawn first. From there, it was a 45 minute wait for a chair in the infusion bay. The first thing the nurse said to me when I got to the infusion bay was "Do you know what your hemoglobin is?" I told her no, but I assumed from her question that it was low. It had been 9.9 only 9 days ago and it was down to 7.6 this week. They immediately began scheduling me for a blood transfusion.
The chemo went pretty well and I was back at work pretty fast. Yesterday, I spent another five hours at the hospital, getting two units of blood. I was hoping that the blood would make me feel better, but it hasn't. I'm guessing that it's the side effects of the chemo that are still keeping me feeling so tired.
I still have no appetite. I told my wife earlier today that I feel like I've spent my entire life looking forward to my next meal. Right now, I feel that if I just decided to stop eating, my body wouldn't care at all. My body would happily let me starve to death. It's no fun trying to force yourself to eat every meal, but that's where I am. Nothing tastes good, and I just have no appetite. It's honestly scary, because it feels like my body is quitting on me. Having an appetite is essential to survival, and I don't have one.
So now, some more waiting. The CT scan is Tuesday morning. Then, it will take a week to get it sent to Sloan Kettering. This time, I expect a rapid turnaround on the read, and permission to get to radiation treatments. Then, I have to start scheduling appointments at ProCure in NJ, the site for my radiation therapy.
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