Another Shot in the Bum

Last June, I got my last shot in the bum in the name of science. I had a caudal epidural to ease my nerve discomfort. It took a while to work, but one day I realized that the tingling was gone. I could move into all sorts of positions without a zing.

In the last month or two, the tingling has returned, so I scheduled another epidural at our Pain Clinic. With the muddy weather, my daughter and I have had to give Mango several baths, sometimes in the same day. Bending over, even from on my knees, has caused my entire left buttock to tingle. That's not as much fun as it sounds. Just bending slightly over the sink to brush my teeth causes the same problem. I get a different tingle if I lay down on too high a pillow. Installing a car harness for Mango in the van was distinctly uncomfortable.

In advance of my two o'clock appointment, I had to fast from 8:00 am. I could take clear liquids until noon. I got to the hospital early for my appointment, as they requested. [Really, if they want you there twenty minutes early, why don't they make the appointment for 1:40?] I scarcely had time to complete the usual paperwork on my pain before the nurse called me in. From there, it was zoom, zoom, zoom and I was out within the hour.

The procedure is awkward, for all concerned. First, I had to lie face down on a slanted table with a pillow under my hips. As soon as the table was straightened and raised, my pants were lowered. Yes, the handsome technician, or was he a nurse, exposed my tingly buttocks and washed them with a bright pink cleanser. Since I had had the procedure before, the doctor and x-ray technician easily found the spot the we're looking for. The doctor shot some local anaesthetic into, um, my bum-crack. It worked instantly and before I knew it she had injected the steroid. Pants up, I was moved to a chair and given a snack while my blood pressure was monitored.

Never one to put my feet up when I am supposed to, my Sweetheart and I stopped at a pet store and the veterinarian's before returning home. I have tried to stay mostly couch-bound since then, the local has worn off, but the steroid isn't yet working. So I have a sore and still tingling bum.

The doctor used a lower steroid dose than last time, since I described my previous side-effects. Last time, I had the typical steroid face: round, red, hot cheeks. I felt "odd" for a couple of days, and low, like chemo low. And I had chills. I was just rereading my blog posts from June 2013 and remembering the side-effects. Ew. Like childbirth, it is good to forget. I hope with the lower dose, I can avoid all that. Either way, for me to do it again, it really had to be worth it. I just hope it works as long this time.

There is a lot of good information from hospitals and clinics to be found online. But if you are considering a caudal epidural and would like to talk to me about it, please email me at jimsgirlblog at gmail dot com. I would be happy to answer any questions you have. You should also have a look at my posts from last June about the procedure.

Have any of you, dear readers, had a caudal epidural? What was your experience like?

Stage IV Snapshot -- Bad Girl!

We have been talking about getting a dog. So when we found out our neighbours were going away, we agreed to look after Lily. She is one of the most lovable dogs on the planet. Although it is certainly a big adjustment having a dog in the house, I see the upsides to the extra work.

Lily is a young dog, a one year old Golden Doodle. She loves to play. Sometimes, all it takes is to toss the ball for her. She even does this crazy dog thing when you make a sudden movement. But Lily also likes tug of war. The other day, I made the mistake of trying to play tug of war with her. I lost. I also hurt myself. I hope I didn't cause a new vertebral fracture. With the amount of pain killers I'm on, it's hard to tell. Not good. Bad girl!

Paying the Price for My Vanity

Vanity isn't the only reason I didn't bring my walker to lunch today, but it was a part of it. I feel like I look so much older and sicker with my walker. Then there's convenience. I would rather use the stairs and escalator than go around to the ramp and elevator. There is another reason. My back. I hurt it the other day (ignoring my limits) and didn't think I should lift the walker in and out of the trunk.

So I went to lunch downtown with my cane and had a great visit with my friends from work. After lunch, I stopped to chat with most of them in their offices. I didn't sit down often enough. That's why I should have had the walker, for the seat as much as the handholds.

Before I even got back to my car, I was wiped out and had to stop and sit down. I called my Sweetie on my way home and asked if he wanted me to pick up any groceries for dinner. Then I begged him to say no. I just couldn't face the grocery store. Accelerating and braking were painful. Sigh. By the time I got home I needed to drag myself inside. Straight for the couch.

I suppose that it made matters worse to have taken the dog for a walk, again with cane not walker, this morning. I'm not very bright, am I?

Honestly, There is a bright side to my foolishness. I won't shut myself in the house and wither. My nature is to regularly forget or ignore my limits. I just like to know where they are.

Epidural Update

I've been meaning to update you on the caudal epidural I had on Tuesday afternoon at the Ottawa Hospital's Pain Clinic. For those of you considering the procedure, I'll tell you a bit about how it was done and I will report on success and side-effects to date.

First, The Procedure

I was met by a nurse who interviewed me about my current pain medication and pain levels. After a bit of a wait (I'm not complaining), a young doctor I hadn't met before came in. I'd seen him consulting my regular anaesthesiologist moments before. He asked me a lot of questions about the extent of my pain and nerve symptoms, explained the procedure and its risks and then asked me to sign a consent form.

Moments later, a handsome young man -- who Sweetie thought was dressed for a joust given his head to toe x-ray shields -- took me into the room where the procedure would take place. He introduced me to the female X-ray technician and asked me to mount the bed. Yes, "mount." The bed was at a 30 degree angle. I was to aim my hips at one pillow and my head at the other. Now I'm not very athletic at my best... and Grace is not my middle name. So, it is a miracle I made it on there in one try. Then things got weird. I mentioned that the caudal epidural goes into the tailbone. Well, I hadn't thought through how they would get there. You see where I'm going with this? Yes, that's when The Jouster pulled my pants down around my hips. But we've just met!

He also set me up with a blood pressure cuff and the little thingy that monitors your blood oxygen. Then the young doctor came in. They placed a drape, wiped my butt with disinfectant, which I later discovered was that bright pink stuff that is hard to scrub off. Probably the worst pain of the procedure came next, when they gave me a local anaesthetic. I didn't feel much, maybe some pressure, when the doc inserted the catheter through my tailbone. The Jouster kept me informed of each step of the procedure, and reminded me to breathe deeply to relax. I felt more pressure as the doctor injected some contrast dye to mark his location. He continuously asked the X-ray tech for another shot, sometimes asking her to switch the angle of the X-ray machine for a better view. All that to make sure that the drug was released where my frazzled nerves needed it most. Next thing I knew, the steroid was being injected and the catheter removed, neither of which I felt. I was then unhooked and moved to a wheelchair for 20 minutes of monitoring... And a snack, which I appreciated having fasted through lunch.

The After-effects

The first few steps after I left the wheelchair felt a little funny, but I'm always stiff when I get up. Plus, my bum was numb. We stopped to pick The Bean up from our neighbour on the way home and I was able to stand a while to chat. Later in the evening I was drowsy, but that isn't unusual. I couldn't really tell if the epidural was working. I was told it could take a week to get the full effect. I thought I was feeling fewer zings. That was good.

The next day, I felt fine most of the day. In the evening I had some chills. I also got wicked indigestion after eating a chocolate bar. I also felt in a peculiar mood for a short while. By the next morning, it was clear that I was reacting to the steroid as I did during chemo. Thursday, my cheeks were hot and red all day. I was told I looked like I was teething! The chills continued off and on, as did the indigestion. I felt quite low, chemo low, for a couple of hours Thursday and again Friday. For what, I ask you?

This is the problem, the zings haven't completely disappeared. I do think they are fewer and farther between, but they are not gone yet. If I had to decide now, I don't think I would repeat the procedure. But let's give it a few weeks to see what the real improvement is.

It wasn't really pain I was hoping the epidural would relieve. The medication change in early May did that. It was the lingering nerve damage, which left long enough will become permanent. I want to be able to lie down beside my girl at bedtime, I want to brush my teeth, I want to pass the potatoes without feeling a zing up or down my back. That's all I'm asking for. We will see if I get that.

Epidural Time: Wish Me Luck!

I am fasting now, in preparation for my caudal epidural this afternoon. To avoid nausea, the Pain Clinic asked me to stop eating six hours ahead. I still have a few minutes where I can drink clear liquids, then nothing for two hours.

The epidural will go into my tailbone and be threaded up to my mid-back, where bone mets caused my vertebrae to shatter before I was even diagnosed with this cancer. There, a steroid will be released, which we hope will relieve some of the nerve pain I have been experiencing. Maybe I will be able to say goodbye to the zings that go up and down my body every time I bend a little, like doing something as risky as brushing my teeth. I get a lot of muscle pain in my mid-back too. I think the muscles are trying to firm up what the bones can't. I don't know if the epidural will help with that.

There are a few risks associated with epidurals. If the spinal cord is nicked you can end up with a headache, or dead, if I understood that right. Perhaps I shouldn't Google as much as I do. No, really there were helpful documents online about caudal epidurals. And the anaesthesiologist explained it to me at my last visit. This procedure is safer than an epidural for labour. First, they go in the tailbone, which is farther from the spinal cord, and second, the procedure is guided by X-ray to ensure they know where they are before releasing the medication.

I am not worried or nervous. I think. In fact, I think my greatest concern is that I have to skip lunch. Really, I better go now. I just have ten minutes left on clear liquids. I`d like to get a few more calories in me before I have to stop drinking. Cranberry juice? Oh that reminds me, a possible -- and temporary -- side effect is urinary incontinence. Oh great!

Wish me luck, friends!

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.

We Can't Not Treat It

Yesterday, we saw Dr. M, my radiation oncologist. The first time we saw her, over a year ago, we were a little bowled over by her approach. Unlike most doctors we see, she took us on a journey through her thought process. She did the same thing yesterday, and I like it. I came out feeling like I understood exactly how and when I would be treated, why I would be treated and even what the risks of the treatment would be. Really, that shouldn't be too much to ask.

Having looked at the CT and X-rays as well as the orthopedist's report, Dr. M was clear that my hip needed to be treated. The problematic tumour is in the femoral neck, the thin part of the femur leading to the ball that fits into the hip joint. It is a vulnerable spot. I should get a call soon to go in for marking in the next 10 to 14 days. The marking (tattooing, actually) is done before the radiation to allow the beam to get the right spot each time. After that, I will get five sessions of radiation to the femoral neck as well as up towards the ball and down a bit into the femur. She informed me that after the radiation, the blood vessels in the area would dilate, which may put me at increased risk of fracture for a period of time. While this risk is known, there isn't sufficient research to determine how long the increased risk would last. Given my health (good compared to many cancer patients) and mobility, she estimated that within a month, my hip should be healed. We also talked about the possibility the orthopedist would recommend surgery, or a fracture would require surgery. She assured me that the radiation and resulting dilation would not have an impact on any subsequent surgery.

As you may know, typically with breast cancer, patients receive 20 to 30 sessions of radiation after surgery and chemo. Bone metastases are treated very differently. Dr. M does five to ten sessions on bone mets. As I understand it, they limit the number of sessions because the radiation can seriously affect patient's bone marrow.  This isn't an issue when the breast is being radiated.

I am preparing myself for two side effects from the radiation. First, I am likely to experience some increase in bone pain in the days after the radiation sessions. That shouldn't last long. I may also get a "sunburn" from the radiation. I still have a darkened, dry area on my back from the radiation I had on my spine. This morning I started applying Dream Cream from Lush to my hip. Perhaps if I keep the area moisturized, it won't burn.

In the meantime, I'm to continue to be careful of the ice. And no jumping off buildings, Dr. M said.  That's a shame. Tomorrow is Superhero Day at the Bean's school. I won't be able to join in.

Round 16

Amazing.  On Friday, I had my 16th round of chemo.  Again, I had a dose of Taxol, with Herceptin and Pamidronate (for my bones).

I haven't posted much about my chemo in a while for two reasons.  One is that, for a number of reasons (not readily apparent to me), I wasn't scheduled for chemo at the end of September.  Then my next chemo was delayed to a Monday due to a mixup about when we returned from Disney.  I had just more than a five week gap between treatments.  The up-side of it was that I'm on a new three-week schedule that doesn't have me getting chemo the day before my nephew's wedding in Calgary.  I am very glad that I can go with my family to the wedding.  In addition to a family reunion on my husband's side, it will also turn into a high school reunion with the same BFFs who came to visit me last November for my birthday. 

The other reason I haven't blogged for a while about my chemo is that it's going quite well.  Knock wood.  This round, I had very little in the way of side effects.  There was no nausea.  I had less fatigue than usual.  The only real problem is that Taxol can give you diarrhea, while the stomach medicine Zofran can cause constipation (as can my pain medication).  This round, I was able to experience both. 

Also, sometime in the last couple of weeks, my swelling went down.  I could wear my wedding rings for the first time in nearly a year!  My watch is now spinning around my wrist in a very annoying fashion.

So the chemo itself isn't hitting me too hard, but I realize that what has depleted my batteries is the fact that I've been on chemo for a year and had cancer for a year.  I am coming to realize that I'll ever be the same. 

More on this, in my next installment, "Power Outages, Chemo-Style."

New Treatment Approaches for May

I went to the Pain Clinic on Tuesday, where they were able to check out my MRI results and let me know about the new compression fracture, which explained the pain in my back.  The Clinic gave me a new prescription. This time, for Naprosyn, aka Aleve, three times a day, with meals. I had stopped the Celebrex last month after it, paradoxically, made my joints feel swollen. The last straw was when my knees felt weak going down the stairs -- if I fall down the stairs now, I'll end up in a million pieces! I went back to ibuprofen until last week's appointment at the Clinic switched me over to Aleve. It took a couple of days to make a noticeable difference, but it's working now. It makes it much easier to get up of the couch to get another cup of tea!

Further to the April test results, on Wednesday, my oncologist has switched me to chemo once every three weeks. They had previously been splitting my dose of Taxol over two weeks. As of last Friday, I was given the full Taxol dose in one sitting.   I was a little concerned that my side-effects would be greater, but so far they have been minimal.  On Saturday, I had the standard moon face with hot, red cheeks.  My stomach felt a little iffy Friday night and Saturday night, so last night I took my Stematil.  I was expecting to feel quite tired today, more from Lena's marathon birthday party yesterday than from chemo, but I feel well.  I'm moving around well, without pain.  Feeling steady on my feet. 

I'm having one of those moments when I feel "like myself" and it feels good.

Update: March 31, 2012

This last round of chemo (yesterday and the previous Friday) has gone quite well, with few side-effects.  Today, the only thing I can complain about is red, hot cheeks.  Yesterday's chemo went by so fast that I didn't even have time to sleep!

I forgot to tell you that a couple of weeks back I finally got into the Ottawa Hospital's Pain Clinic.  My wonderful pain nurse had referred me some time ago, I think back when I was having so much trouble with drowsiness.  I found it interesting that before being seen at the Pain Clinic you have to sign a fairly lengthy agreement to ensure your pain medication isn't abused or shared.

First we met with a nurse there, and then a doctor.  She told me that the NSAIDs are the preferred drug class for pain from bone metastases and prescribed Celebrex.  Quite quickly, I noticed it relieved the pain I've had in my mid-back since a disappointing trip to Red Lobster with the folks (a one-hour wait, mostly leaning against a window ledge, hence the mid-back pain).  Since I've been on the Celebrex, I guess for about 10 days now, I have noticed other pains.  One affects my arms and sometimes legs.  It's a weird pain, mostly like I need to move around.  It kept me up the other night.  I've also been feeling the liver tumours and the pain formerly known as my endometriosis pain.  Mysterious.  At the Pain Clinic, they see patients every week or two, so I'm back there pretty soon for a check-up and maybe and adjustment of my pain medications.