Working to Stay Ahead of the Pain

I think I've mentioned in the past that I am a patient at my local hospital's Pain Clinic, here in Ottawa. Because my spine fractured in several places before I even got my breast cancer diagnosis, one of the first things my medical oncologist tackled was getting my pain under control. That's where the wonderful nurse Gini comes in.

Gini's focus is on the palliative side of cancer care, relieving the pain. She saw me before and after my pelvis broke and put me on the waiting list for the new Pain Clinic. Before long, my pain had receded to the point that I no longer needed the pain pump full of Dilaudid. In fact, it was putting me to sleep as I ate breakfast! She kept me at the clinic, although my pain was manageable. I think she had a feeling...

When I saw Gini at the clinic in early February, things were so stable we decided I didn't need to come back for three months. Unfortunately, I didn't realize the effect some treatment changes would have on my pain in the interim. In late January, after a short chemo break, I was switched to daily Tamoxifen pills. My late January CT scan found a tumour on my right femoral neck that put me at risk of fracture and was subsequently treated with radiation. In March, I started a double-blind clinical trial where I was either continuing my bone-building Pamidronate treatment (but every four weeks instead of three) or I was getting Zometa, a similar drug. Put them all together and my pain, or rather my pains, increased. I was taking long-acting hydromorphone contin (a narcotic), Lyrica (for nerve pain) and Naprosyn (an anti-inflammatory) as well as hydromorphone (AKA Dilaudid) for breakthrough pain. I was taking enough to address the bone and nerve pain caused by my tumours and fractures, as well as the pain of chronic problems I have with my jaw and wrists. However, by the time I returned to the Pain Clinic in early May, I was taking several doses of Dilaudid for breakthrough pain each day. I returned to wearing my bite guard at night, as well as my wrist braces. Something had to change.

The young doctor I saw took the time to fully understand my history and the pains I was now experiencing. She consulted a senior anaesthesiologist and returned with a proposal. First, we adjusted my medication, increasing the Lyrica dose and changing the hydromorphone contin from twice to three times a day. Second, she proposed that I return at the first available appointment (early June as it turns out) to have a caudal epidural.

With the aide of a skeleton, she and the senior anaesthesiologist explained that a needle would be inserted in my tailbone and a catheter would be fished up my spine to where my compression fractures occurred and the pain relieving steroid would be released there. The procedure is safer that a traditional epidural for labour. The tailbone injection site is farther from the spinal cord and therefore less likely to cause an injury. Also the placement of the catheter will be guided by X-ray. The relief from this type of nerve block can last as long as six months, generally less than that for cancer patients.

I learned about nerve block's from one of my favourite bloggers, Scorchy at The Sarcastic Boob.  Her recent posts, "Rear View Mirror" and "Paincation Redux" tell her tale of pain and relief and explain the nerve block she gets (it's a little different from the epidural). Thank you, Scorchy for introducing me to the nerve block! It meant that when I went to the Pain Clinic I knew there were options. I didn't have to live with pain. And living is what I'm trying to do.

Now that I'm awake, I Can Fill You In

Over the last month, I have certainly reduced any sleep defecit I had!  Honestly, I have had days where I napped for hours in the afternoon, slept on the couch all evening, had a normal night's sleep, and then fell asleep reading the newspaper at breakfast.  You have to agree, it's a bit much!

Finding a solution hasn't been easy.  Our working theory has been that my pain level has reduced enough that the level of hydromorphone I was getting in the pump was causing me to get drowsy.  It seems that you can tolerate high levels of this drug withough side-effects if you have high pain levels too.  But once they drop, weird things can happen.  In fact, when they first put me on the pump in the hospital, the levels were so high that I was sleepy and hallucinating.  Truly loopy.  Lately, just sleepy.

Realizing that my pump was set at a pretty low continuous dose, my pain nurse suggested we remove the pump and replace it with the right doses of both continuous and breakthrough levels of oral hydromorphone. We've spent the last couple of weeks adjusting the oral medications. The trouble is, I'm still drowsy.  And I've had more pain, especially in the morning.

My pain nurse, who is fabulous, has referred me to the Complex Cancer Pain Clinic in the hope that it will offer new alternatives that will help me.  Here's hoping. 

Chemo Update: January 20, 2012

After having a chemo break on Friday the 13th of January, I started up again last Friday.  As usual, my first chemo session gives me all three drugs:  taxol, herceptin and pamidrinate.

This was a very usual chemo session.  Just me and Geoff and a few things to read.  And as usual, after the benedryl drip, which always precedes the taxol, I fell asleep.  Of course, I've been sleepy for a week or more.  We're not sure if it has to do with the levels on my pain pump.  In any case, the drowsiness has continued through the weekend.

I took zafron Friday and Saturday to prevent nausea, which it has, but it's usual side-effect of constipation has also been the result.  Let's hope that doesn't last too long.

I realize this isn't a very interesting post, but let me tell you, a chemo session with little to report is a good thing!

Chemo Update: January 6

I had chemotherapy again on Friday, January 6.  As usual, Geoff came with me, but this time two old friends visited as well... somewhat to the chagrin of my otherwise cheerful nurse.  We are really only to have one person accompanying us to our chemotherapy treatment.  I suppose that keeps the noise down for everyone else.

This session, I just received the Taxol, along with the drugs that are given with it.  One is a steroid and another is Benedryl.  The Benedryl is given right before the Taxol.  The result is that I get really sleepy pretty quickly.  I always bring books and puzzles to while away the time during chemo, but every time, I end up getting drowsy or falling completely to sleep and if you would believe it, later on, I get drowsy at home trying to re-read the same part of the book or trying to do the same puzzle.  Very frustrating.  I would think that this doesn't make me a very interesting person to visit, but my old friends didn't seem to mind -- as far as I could tell through my droopy eyelids.

All those drugs are given through the PICC line, which is convenient enough, except that it can interfere with my pain pump delivery.  During certain IV treatments, I have to disconnect the pain pump.  Given that I'm spending that time sitting quietly on a bed, it's not generally a problem that I'm not getting my pain medication.  But with all the saline they pump into me, I do generally have to make a couple of trips to the bathroom down the hall.  With luck, I can reconnect the pain pump and give myself a shot before dragging my bad leg down off the bed and down the hall.  If you're curious, I don't use the walker for these trips.  I have to bring the IV stack, as it's still infusing medication as I head to the bathroom.  So I just unplug the IV power pack from the wall and put my weight on the pole to make it to the bathroom and back.  Haven't had any trouble so far; I just don't look very graceful.

Friday's chemo session started at noon, so I had some lunch there in the hospital bed.  I packed a light lunch of celery and peanut butter, crackers and clementines, with a cup of milk. And a cookie too; it's Christmas.  I've been choosing the hospital bed over the chairs for chemo lately.  I like being able to change positions easily in the chair.  Plus they have convenient tables on either side for your stuff.  But with the swollen ankles I've got, I figure I am better off in the bed, where I can keep my feet up higher in the hope the swelling will lessen.

So, Friday's session was pretty routine at the hospital; the only change being my extra guests.  I wasn't as tired as last week, but I was unsure how I would feel in the evening.  We were invited to attend a friend's bonfire that night.  It sounded like a lot of fun, but I wasn't sure how accessible it would be for me in my current physical state and I wondered if I'd be exhausted like after the previous week's chemo.  So I let Geoff and Lena go with one of Lena's friends and I stayed on the couch at home.  Just as well.  I ended up with stomach cramps just after they left.  Nothing too bad or too long lasting, but I was uncomfortable for about a half an hour.  Geoff later assured me that the layout of his friend's bonfire would have been easy for me to access, so I hope to be able to attend the next one.

Overnight, I had more problems.  I woke up feeling hungry, I thought, but not quite wanting to eat.  And I'm not "authorised" to go down the stairs alone, so I just lay there in bed hoping the discomfort would pass.  It didn't really.  It became more of a stomach ache, even nausea.  I didn't like it a bit.

Eventually morning came and I took the Zofran pill the doctor recommended.  Zofran is one of the anti-nausea pills that is available to chemo patients.  My doctor had cut my dose from one or two for each of the five days from the start of chemo to only taking one dose the day of chemo and the following day.  My doctors tend to be of the "if you need it, take it; if you don't need it, don't" school.  As a result, and hoping for a better night, before going to bed Saturday I took another Zofran and I brought upstairs my bottle of Stematil, another anti-nausea medication that I'm prescribed on an as needed basis.  It turns out I didn't need the Stematil overnight, but I'm glad I had it at hand.  All I had was my usual sore back by 5am.  It's not easy to find 8-plus hours of comfortable sleep positions when you have a broken pelvis and several broken vertabrea.

Awareness note:  In addition to the Stematil pills that are prescribed to chemo patients, we are also given vials of injectable Stematil which we can call the community/home-care nurses to come and inject anytime if we find we can't keep anything down.  It really is comforting to know that the system is working to take care of us from all these angles, day and night.