More on OxyContin

It's now been about a month that I've been trying to wean off of OxyContin, (Oxy) and although I'm able to take a much lower dose than I used to be on, I still experience withdrawal symptoms if I'm late taking a dose.  I am now down to a little more than half a pill per day, divided into two doses.

I spoke to a friend who successfully helped a relative wean off of Oxy not long ago.  With advice from a pharmacologist, they reduced the dosage in small increments and stayed on that dose for three weeks before reducing again.  The overall weaning process took five months!

A few days ago I spoke to the physician's assistant (PA) in my oncologist's office about the need to have an "exit plan" before prescribing Oxy.  It was an interesting, and sobering, discussion.  Although she agreed that such exit plans are sometimes necessary, most patients with metastatic cancer have pain that will never go away and there is no plan to get them off of Oxy...ever.

I will say that Oxy is a great drug for controlling pain because it not only took my pain away, it also gave me a feeling of wellbeing that I've never experienced before.  I would feel warm in the core of my body and relaxed enough that I could sleep if I wanted to. It's very obvious why it is so highly addictive.

I expect that in the course of this cancer journey I'm on, I will need to consider taking Oxy again in the future.  I will do so with my eyes wide open and will likely only choose to go back on it when I know that I will need it forever.  Withdrawal symptoms while weaning are unpleasant and annoying,  but as I see it, the only thing worse is being on a drug that I don't need.  Celebrate with me being pain-free for now and hope it lasts a long time...

Time and the Triad

Early on in my cancer journey was a very scary and confusing time for me.  I was being forced to learn information I didn’t want to know. I had many questions and was so fearful of the answers.  Some questions I asked or looked up right away, while others I decided not to search because I knew I was unprepared for the answers.  A close relative and an old family friend talked or asked about ‘when (I) die’ and ‘how long’ I had, which was extremely difficult and painful to deal with within the first few weeks.  It has now been about 4 months since I was found to have cancer.  I still sometimes feel like I’m in the middle of a nightmare and will soon wake up. 

Four months from diagnosis is a poignant time marker for me.  One of the questions I searched, with great trepidation several weeks after my diagnosis was established, was “How long do people with stage 4 adenocarcinoma of the lung live?”  I found two answers online.  One online source said, “Six to 12-months” and another said, “The median life expectancy is eight months,” meaning that at eight months after diagnosis half the patients are alive, the other half are dead.  Being at four months feels like being somewhere around ½-way to these online predictions. 

No doubt, these past four months have been, physically and emotionally, the most difficult months of my life.  Not only have I been through the wringer, but my illness and treatments have put everyone close to me through the wringer, too.  It continues to be so painful to watch my husband, children, mother, extended family and friends walk this journey along side of me. 

However, despite the deadlines I found online, (pun intended), I don’t feel like I’m halfway to the end.  I feel healthy and strong enough to go on for much longer.  My oncologist has always talked about being in treatment in terms of years…not months. He tells me that with the new treatments now available, life expectancy for patients like me can be measured in years.   

These past four months have also demonstrated to me the power and strength of the mind, body and spirit triad.  I’ve always felt the need to nurture each component, equally, because I feel they are all equally important to being a healthy, well-balanced woman.  What I have learned during the first four months of my journey is that having nurtured all parts of the triad and working to try to make each part as strong as possible, when one component was letting me down…my body… the other two parts were able to step in to assist.  At a time when I was so worried that my body was going to fail me all together, my mind and spirit told me that I needed to face my cancer challenge, head on.  My mind and spirit reminded me that my fight wasn’t just for me, but also for Wynn, Nathan, and Nina.  My mind and spirit reminded me that I still have unmet dreams.

I'd really hate to jinx myself by saying that my body has been feeling stronger the last couple of weeks.  This strength brings energy, and relief, to my mind and spirit, (which have been working overtime lately.)  Although I won’t know for sure until my next CT scans, I believe my oral chemo is helping me move toward the mind, body and spirit balance I always want.

Still Trying

Ten days have passed since I blogged about trying to get off of Oxycontin.  Unfortunately, I’m still working on getting off of it.  My doctor continues to make suggestions and encourages me to wean slowly...very slowly.  It takes patience, which I don’t have much of. 

This past weekend my dear friend, Brigid, and I went to Austin, TX.  I was really feeling the need to get away and have never been to TX.  Since my diagnosis in December, I’ve hardly been out of my suburb.  Austin has a great music scene and inexpensive, good food.  The most appealing part of Austin was the warm sun.  The Chicagoland area has had a cold, wet spring.  I usually don’t complain about the weather much, but having cancer and going through bouts of withdrawal are leaving me chilled to the bone.  It was in the high 80’s and a little humid in Austin, which felt amazingly good.  We sunned, pool-side, walked along the Colorado River, and relaxed.  The flight down to TX was challenging.  I got sick a few times and am so grateful that Brigid was with me.  She’s a real trooper and a great friend.  Once there, everything else went smoothly, including the flight home.  Wynn and I are planning a week vacation soon and this quick getaway gave me the confidence that I can actually travel and nothing bad will happen.   

My next CT scans are scheduled for the first week of May.  These are the scans that will let my doctors and me know if the oral chemotherapy I’ve been taking for the last 6 weeks is working, or not.  I was so nervous about my first set of scans, which told us that the chemotherapies I was initially on weren’t working.  You can imagine how nervous I am about this next set.

The Unintended Addict

My cancer story started with a trip to an emergency room because I had abdominal pain.  Since then, I’ve been dealing with pain of some kind (from mets to my liver and bones) on a daily basis.  Most of the time, my pain has been fairly easy to control.  For the first couple of months, I took ibuprofen (Motrin).  Despite having to take ~1200-1400 mg per day, everyday, it did the trick and I was glad that I was able to manage my pain with an over-the-counter medication.  At the end of January I needed to prepare for a second liver biopsy and since ibuprofen causes increased bleeding, I needed to switch to another painkiller before my doctors were willing to consider doing a surgical procedure. 

My oncologist suggested Oxycontin as an alternative painkiller because it’s so good at controlling pain, plus it doesn’t add any bleeding risks.  I was very hesitant to take it because I’d heard that it is so addictive.  After a long discussion with my doctor, it didn’t seem like I had many choices if I didn’t want to delay getting my liver biopsy, which I didn’t.  So, towards the end of January, I switched from ibuprofen to Oxycontin, (Oxy).  Oxy is easier to take because it’s a longer-acting drug.  Rather than taking 2-3 ibuprofens 3-times/day, I was taking 1 Oxy, twice a day.  It easily worked into my medication regiment and controlled my pain well. 

In March I started my new oral chemotherapy, which has been a real pain in the keester, (figuratively), to adjust to.  I’ve had lots of dizziness, nausea/vomiting, and fatigue.  It’s taken nearly a month, but it seems that my body is finally adjusting and the side effects seem to be subsiding.  In dealing with all the side effects, it took me awhile to realize that I was actually feeling fewer disease symptoms…less liver discomfort and almost no bone pain.  After another discussion with my oncologist, I decided to stop taking Oxycontin,  (which is much easier said than done.)  For the first week, I cut back to half an Oxycontin pill, twice a day.  I really felt no difference.  Then, a few days ago, I reduced my intake to ¼-pill twice a day.  That has not gone so well.

Mid-day of the second day I was on a ¼-pill, I started having strange sensations that I’ve never experienced before.  I was hot, then cold, within minutes, then I’d be sweaty and had nausea/vomiting.  When cold, I’d shiver.  Then there were moments where I needed to violently shake my body. I was experiencing incredible anxiety and felt like I wanted to jump out of my skin. I soon realized that I was experiencing withdrawal. I called my oncologist who agreed that I was probably experiencing some withdrawal symptoms and suggested weaning off of the Oxy even slower than I was.  He suggested ½-pill in the mornings and ¼-pill at night, so that in total I was taking ¾ of a pill per 24-hours.  I’ve done this for two days now, and things are going a little better.  I haven’t had any more nausea/vomiting from withdrawal and less anxiety, rapid temperature changes and shakes.

In getting information on-line, I now understand that detoxing from Oxycontin is very difficult.  It’s a synthetic opiate that’s highly additive and most successful detox stories involve either out-patient or in-patient professional help of some kind.  So, if I can’t do this by myself, I’ll take the next necessary step. 

I am now sympathetic to addicts of any kind.  I had no idea how such cravings start and now understand that one can also become an unintended addict while just trying to legitimately manage one’s own health. Shoot….I’m even empathetic to Rush Limbaugh, who also became addicted to Oxy.  I think of street people I’ve seen lying on a sidewalk, shaking, and now realize the hell they were experiencing. No matter how they ended up there, withdrawing from a toxin is a horrible experience.  Trust me.

Lost in this whole story is that I’m trying to get off of Oxycontin because I have a lot less pain these days…which makes me more hopeful that my new oral chemotherapy is actually working.