What the doctors don’t tell you

24 Jan

My blog posts have slowed down a bit recently, which has been a direct correlation to my energy level.  I’ve had a difficult past few weeks and it wasn’t really something I was prepared for.  Since commencing my cancer treatment, I’ve signed countless release forms, acknowledging endless potential side effects ranging from loss of salivary glands to internal bleeding to death.  However, there’s one thing that none of my doctors warned me about…addiction to pain medication.

I had been on one type of pain medication or another since my surgery in the beginning of November.  By the first week in January I had progressed enough that I decided I didn’t need any more pain meds, so I stopped them.  Cold turkey.  It was only then that I realized I had developed an addiction.  Not a mental addiction, but a physical addiction.  My gut instinct was to feel slightly ashamed; how had I let this happen?  I shared this with some family, friends and doctors, only to find this is more common than one might think.

My doctors had been so quick to prescribe endless amounts of pain medication, but never provided the instruction manual for discontinuing it.  I think I’m going to offer to write one for them to give patients.  It would read something like this: Before going to bed, place three spare t-shirts next to your bed.  You will sweat profusely through all of them before morning comes, yet manage to have goose bumps on your arms the entire time.  Plan to exert 300 times the effort, only to accomplish 20% of the work.  Your legs will sometimes shake with tremors – just ignore this.  You will be exhausted the entire day, but won’t be able to sleep.  Once you are almost through the withdrawal process, your adrenal glands will be completely reversed and your energy will bounce back to normal levels…at 2am.  At this point, quit your day job and try to find a graveyard shift you can work.

Needless to say, going through this process was difficult.  After quitting cold turkey – and being miserable – I did some research and found that most doctors will tell you never to quit instantly, but rather to wean yourself off.  So I gladly resumed the pills for a short while in order to gradually come down.  It’s now been a week or so and my energy and internal clock are finally falling back into place.  So what’s next?

I continue to sport my ileostomy bag – it’s been 12 weeks now, but who’s counting?  In order to get rid of the bag my new GI tract has to be leak-proof, however I failed the last leak test they performed.  So we wait a few more weeks and try again.  In the mean time, I’ll be getting another CT scan done to assess the remaining lesion on the liver.  Depending on the size (if it’s shrinking, maintaining, or growing), we’ll determine the next course of action to treat this area while we’re waiting for the plumbing down below to seal.  While there is still a lot of work to be done, I remain optimistic.  During my last visit to the oncologist’s office, I informed him that I turn 30 this summer and that I plan to be cancer-free by this time.  He thought this was a completely realistic goal, which was reassuring.  It’s been a long time since I was this excited for my next birthday!

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9 Responses to “What the doctors don’t tell you”

  1. Suzanne Svoboda January 25, 2011 at 4:34 am #

    Emily,
    Oh boy I had not even thought about this piece of the puzzle for you. With time the mind has a way of healing and I had forgotten the pain component of the situation, I could have warned you. I was on pain medication for what seemed like forever and progressed to something called Fentanyl (spelling?) which was prescribed in a patch form to give me as much consistent pain relief as possible. I had almost the same experience as you except I was told when the medication was prescribed that going off it would have to be monitored by a doctor and they would wean me off it. I decided I could live with that, did not sound like a big ordeal to me in light of my situation. Did not really seem like a warning or red flag at the time. Maybe if they had made me watch an episode of Intervention and said this could be you at some point I may have made a different decision, but then again maybe not, pain is pain and the brains natural impulse is “Stop Pain”. Well I was on patch for about a year and began to decrease the dose, with doctor’s help and did fairly well until I was down to my last milligram change and boy oh boy no one warned me about that one. I thought I was going out of my mind, it was like the worse flu ever times ten and I managed to fall down a flight of stairs not once but twice, once during the night while running to the little girls room I ran smack into a wall with my face and broke my nose.
    Decided enough was enough and doctor had to actually admit me to the hospital for three days to get me through the last phase. But when I read your posting it reminded me how it was never reinforced that yes you can take medication to help with pain but “BEWARE” you will go through withdrawal even seasoned addicts would have a difficult time dealing with.

    I commend you, it sounds as if you are doing better now, thank God. If you are just newly coming off this stuff it can take months and months to feel like your old self again, but going through this episode should not deter you from future pain treatment. Learn from your experience and only take as needed instead of how prescribed. Believe me there is a difference when you take it only for severe pain verses taking it as prescribed. Also drink Smart Water which replaces electrolytes and try Flintstones chewable vitamins which give your body a better chance to absorb the much needed nutrients. Also you can try making fruit smoothies at home with frozen fruit and some vitamin D milk and/or yogurt adding protein powder to it. I have a problem with digesting some dairy products so you do not have to add the milk but yogurt is great for your bowels period. Since having the ileostomy reversed in 2001 I have never been able to digest food correctly so to this day these three items are part of my daily routine.

    Thank you so much for posting I always look forward to reading your updates and I continue to pray for you and a speedy recovery. Hopefully someday this will all be a distant memory for you.

  2. diane rislow January 25, 2011 at 6:08 am #

    I need to introduce myself…I’m Diane, a former high school classmate of your Mom and Dad. I am a cousin to Bob Burfeind and I understand you were close friends of his daughter while you lived in the cities. You are also my daughter’s age and I think about what if this was my daughter. Your Mom gave me permission to follow your blog as long as I prayed for you. That was easy.

    Your blog is amazing and I hope and pray that you will make a book some day with the entries you have made. I think it would help so many cancer patients. I truly believe that is why God is having you go through this trial, to share your message with others.

    I love your upbeat attitude no matter what the citation. You are going to kick cancer’s butt. I know it.

    By the way, I’ll keep praying. I hope I can meet you some day. God be with you Emily and also your family.
    Diane Rislow

  3. Rita Hartert January 25, 2011 at 8:13 am #

    Em, my first reaction in reading your post this morning was ‘Wow!’ Since your diagnosis you have kept us informed and educated many. I truly believe you could/should formulate your pages into a pamphlet that should be in every oncologist’s office for patients. Not so much a ‘how to,’ but a ‘what is possible’ booklet. Think of all the sales, and the hope you could give cancer patients….especially those experiencing your type of cancer. You have superb writing abilities! We continue to pray for positive results on your upcoming scan.

  4. Mike Ihrke January 25, 2011 at 10:41 am #

    Hang in there Cuz! We all look forward to celebrating your 30th birthday free and clear!

    Thoughts and Prayers,
    Mike & Amy

  5. Fabs January 25, 2011 at 3:09 pm #

    Hi Em,
    Thanks for posting more updates.
    Hang in there Em you will win this battle, you are an amazing and a strong woman and it will be over soon!!!! I hope I can celebrate your birthday with u, it will be great and you will definitely reach your goal!!! My thoughts and prayers are always with you. Love and miss u xoxo

  6. Holly (Angela Ihrke's sister) January 26, 2011 at 5:17 am #

    Hi Emily,

    Thank you so much for sharing your journey in such a open, honest and inspiring way. You are truely a gifted writer and we are praying and pulling all along the way.

  7. Karen Moger January 26, 2011 at 7:05 pm #

    I too had the same “Love/Hate” relationship with pain pills. What would we do without them? Be less constipated, that’s for sure. It will be good to put it all to rest, in the mean time, soldier on dear one!

  8. Mary Nakaki January 27, 2011 at 1:08 pm #

    Hi Emily,
    You sure are getting expert training in something no one wants to be the expert at. It’s amazing what you have taught all of us especially how we need to stop and think about what a person might be going through. One thing is for sure that you could never have anything you need to be ashamed of you are just to inspiring for that to happen. Please hold on to that optimism that is what will take you to 30th birthdays and beyond!

  9. Toni Sandler January 31, 2011 at 10:07 am #

    Em, you continue to amaze me. I went through a similar post-op pain killers issue and wish somebody had forwarned me, especially since I think I have a fairly high pain tolerance. Your writing something to help both colorectal and any other people with pain killer needs is terrific and I suspect it would be good for you. How typical (I think I can say this now) of you to fashion something positive out of something not-so-good! Bravo!

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