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!

A Milestone: 20,000 Page Views

Wow! Sometime in the last couple of days, this blog has hit a milestone I never anticipated: 20,000 page views. This is something that merits celebration, and gratitude.

I started my cancer blog after a short career as a geaneablogger (about family history) mostly as a way to keep family and friends aware of how my treatment was going. I knew many were getting the info through my mom and their parents. I'm sure some details got lost in translation. It was also difficult to tell the whole story over and over. My blog gave me a chance to write it down, once and for all.

My secondary purpose for the blog was to raise awareness of breast cancer. For a while, I gave my readers a monthly reminder to "check your boobs!" I think I felt that I might have caught my cancer earlier if I had done regular self-examinations. Then, as I became more educated about breast cancer, I realized that self-exams and mammograms aren't the be all and end all for finding cancer. That's when I dropped the words "breast cancer awareness" from the blog's title and went for the straightforward "Kate Has Cancer."

I received some criticism for the change. Is it defeatist to call myself Kate Has Cancer on the blog and Twitter? No, it's realistic. Remember, I have Stage IV breast cancer. I have had advanced cancer since they found it. Chemo, radiation and the other therapies have shrunken my tumours -- you can't even feel the one in my breast -- but many of them are still there in my liver and bones. My blood tests are fine. so I figure, if my liver can live with these tumours, then so can I!

Over time, another purpose for my blogging has emerged. I hope that others with advanced breast cancer can find, in my blog, some peace, some information and some hope. I don't focus on the latest news from clinical oncology. I talk about my treatments and the resources available to me here in Ottawa. Judging by the Blogger Stats, my most popular post, with nearly 600 page views, is perhaps my most practical one, on PICC line covers. I hope my link to a crochet pattern helped someone with cancer or even someone who wanted to help someone with cancer. I've had 800 views of my About Kate page, which I imagine could use an update. Almost 400 read my early post about how I started onto this cancer roller-coaster. Around 300 read two of my glimpses into the terror of Stage IV cancer, Reflections on Recent Deaths and Someone Took the Monster Out of the Cupboard. I have seen my readership rise to, on average, 200 page views per post. I never expected this. I may be Italian, but I don`t have that many cousins!

That brings me to the grateful part. I thank you readers for continuing to read and support me. Your comments on the blog have given me new perspectives and great support. I also thank God that I'm still here to write! Every day, every post is a blessing. I must also express my appreciation to my fellow bloggers who have directed considerable traffic my way: Ann at Breast Cancer? But Doctor....I Hate Pink!, Nancy at Nancy's Point, Jenny at Putting the GRRRRR in Grimes, and Nancy at The Dirty Pink Underbelly.

I hope to be here many more years. And I hope you stick with me. Thanks for coming.

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.

Someone Took the Monster Out of the Cupboard

I have a monster in the cupboard. We don't need to look at him every day, so we keep him in the cupboard. My husband and I know he's there. We take him out from time to time, but not often; he's so scary. I thought my daughter knew he was there. She didn't. She didn't know we had a monster.

The monster is the fact that breast cancer kills.

My daughter, the Bean, was eight years old when I was diagnosed with Stage IV breast cancer. The day we got the biopsy results, we told her.  It was a "Hockey Fights Cancer" game night for our Ottawa Senators. We thought that might help. Before the game, she got into her jammies and she and I sat in the rocking chair, my Sweetie on the bed. After we told her, she started to cry. Why, we asked? She thought everyone with cancer dies. I told her that wasn't true. I told her that there was no cure for my cancer, but there is treatment. I told her that our beloved family doctor has not lost a single breast cancer patient. I told her the truth. But she didn't understand it all.

Last night at bedtime, as we chatted about otherwise happy things, she compared my sister-in-law's rare cancer to breast cancer and said something along the line that no one dies from breast cancer. I winced. Without a doubt, I will never win a poker game. My face shows too much. So, I winced and said that sometimes people die of breast cancer. I didn't elaborate. I just told her the truth.

To her credit, impressive for a ten year old with a history of anxiety problems, she said, "that's enough about that" and changed the subject. Still, the monster was out of the cupboard for a moment.

My Sweetie wasn't happy about this exchange. I want to preserve her childhood, her innocence, as much as he does. But in the moment she said what she did, I was afraid that some day, when I take a turn for the worse, she would feel like I had been lying to her about my ability to fight this disease. It is ugly, but it is the truth: breast cancer will kill me. I don't want her to confuse my attitude with invincibility.

I am quite happy to put the monster back in the cupboard and leave him there as long as possible. I don't like the monster. Not one bit. But she is my girl, and I had to tell her the truth.

Can I ask, moms with mets and tweens, how much do your children understand about Stage IV cancer. Do you keep your monster in the cupboard or on a shelf? How do you balance honesty and innocence?

The Ottawa Regional Cancer Foundation runs the Maplesoft Centre here in town, not far from the hospital where I get my care. Maplesoft offers the Wonders and Worries series for children aged five to twelve to help them cope with a cancer diagnosis to their parent or grandparent. We've told the Bean about the program, but she says she isn't interested. If your child needs help, in the Ottawa area, please contact the Maplesoft Centre at 613.247.3527 or info@ottawacancer.ca.

You may also want to read the new book, "My Parent Has Cancer and It Really Sucks" by father and daughter team Marc and Maya Silver. I was fortunate enough to win this book from Nancy Stordahl at Nancy's Point. The book offers a terrific compilation of practical advice, much of it from teens who have lived with their parent's cancer diagnosis or even death. The book is written for teens. The Bean isn't ready for it yet, in terms of maturity rather than reading ability. Nevertheless, the book has given me an idea or two to open up the conversation about cancer. After my diagnosis, she had so many questions for me about cancer and the treatment I was getting. She, like her parents, got the hang of it after about six months. Now she doesn't really want to talk about it. I don't know if that's good or bad. I certainly don't want to make her life "all cancer, all the time." But neither do I want her to live completely in denial. I'm a big fan of denial, don't get me wrong, but it's a matter of proportion. That's why the monster lives in the cupboard, but we don't pretend he's moved out.

Call Me Mabel, Stable Mabel

This morning I saw my oncologist to get the results of the CT scan I had last Friday. Everything is stable! I will admit that I really liked the CTs I had during chemo that showed my liver tumours shrinking dramatically. OK, I wish I was NED (no evidence of disease). But I am happy to be sable, Stable Mabel.

This was my first CT scan since I began Tamoxifen treatment. I had thought of this drug only for its value in preventing the recurrence of breast cancer; I hadn't realized it was used for metastatic disease as well. I thought I was going to have to do chemo for the rest of my life. [Yes, there is SO much I don't know!] My bone marrow is glad for the chemo break, not that Tamoxifen is completely benign. I have had increased joint pain, significant nausea and, most recently, hot flashes. It's almost as bad as my chemo, Taxol. But it isn't as toxic. Knowing that my doctor has so many drugs to use against my cancer (triple positive ductal breast cancer) is comforting. In fact, the doctor mentioned that it appears that cancer cells are forgetful. They lose their resistance to particular chemo drugs after about a year. That allows the oncologists to retry a drug that stopped working. It gives me hope that I will be around for a while.

I swear, I cry almost as much after good news as bad. My Sweetheart and I admitted some of our fears to my oncologist. My doctor is, and always has been very optimistic about his ability to treat my cancer as a chronic condition, rather than a life-threatening one. The truth is that right now my cancer is not threatening my life. i really should relax a little. Both the doc and my Sweetie would like it if I stayed off the Internet and forgot about median survival rates. They have a good point, but it would be hard. I feel a great deal of comfort and support from the breast cancer blogging community. Plus, I want to use my blog to keep my loved ones up to date and to, I hope, be of comfort and support to others.

[My title was inspired by Jen at Learning to Live Lengendary and her post "Missing Mabel.")

Reflections on Recent Deaths

I was shocked today to learn that Roger Ebert had passed away only days after announcing he was taking a "leave of presence" due to the return of his cancer. He had so many plans for this leave and now he is gone. Just weeks ago, Donna Peach, a breast cancer blogger, passed away after what seemed to be a recurrence of shingles. Through the Twitter feed I was informed today of another passing, this time of the mother of young children.

Given my condition, I can't help but be touched by these deaths. There but for the grace of God go I. Reflections fill my head and spill out my fingertips to my blog. I need to write these things publicly. I need to be held to account. Because I don't want to slip away before I do the things I need to do.

WARNING: this post is not for the faint of heart. Please stop now if my honesty may disturb you.

First, let me say how grateful I am to have lived eighteen months since my diagnosis of Stage IV breast cancer. You don't want to know what the median survival is. Google it if you have to, but you don't want to know. My doctor talks of treating me for decades and decades. I hope so. I know he can't guarantee me that much time.

Whatever time I have, I want to write more, sit less. I don't want this sore neck that comes from too much time sprawled on the couch. Now that spring is approaching, or at least the snowbanks are receding, I want to drag my walker outside and walk, damnit! I want to smell the fresh air and feel the sun. It is time to listen to the birds call my name. I'm not confident that I can walk 5km like I did last fall. My hip appears to be healing. Walking helps it heal. What I need to do is clear.

I also want to use up my craft stash. I can't bear the thought of my Sweetheart having to sort through it without me. It would be best that he not know how many things I plan to make a purse out of, on top of all the other purses I have. There is so much wool. So many beads. I want to make a rosary for my niece before her baptism. I'm proud to be her godmother!

Organizing my paper and electronic genealogy files is another priority. Genealogy isn't a project you finish. Nevertheless, there is so much I should do, like improving my source citations and adding photos and then posting my family tree to the public. I am late in responding to a couple of people eager to share research. Cancerland has been a busy place the last few months. So many appointments. Gee, why don't I make myself an appointment to visit the National Archives again with Sweetie? I should schedule time to tackle my hobbies.

And then there is the pile of stuff at my office. I've been trying to get back there since January to sort through my effects and my working papers. I appreciate my coworkers packing up my office to clear it for my replacement, but there's so much for me yet to do. I've been thinking of holding a garage sale for the candy dishes, mugs, vases and toys I had at the office. There's a way to raise money for "the cure."

I also want to prepare for, shall we say, the worst case scenario. I need to write messages for the Bean in case I'm not here for her the day her heart is broken or she runs up her credit card. So many things I have to say. She calls them Mommy's lectures now. She is turning ten. Another few years and she won't hear a word I say. But one day she will regret that. Do I write or do I videotape my messages to her? Maybe both. It won't be a small or easy task.

There are practical preparations too. I take care of the family finances. We have been meeting with our financial advisor and most of our retirement and education savings, insurance and mortgage are with him. I think it is time to get rid of my bank account in favour of joint accounts with my Sweetheart, so he has easier access to all our assets when I am incapacitated or gone.

I have been reading books about healing, meditation and happiness. I would like to practice meditation. In fact, my physiotherapy routine is primarily breathing and relaxation. I can believe that meditation may help shrink my tumours, shall we say by helping my medical treatment to be as effective as possible. At the very least, meditation would improve my quality of life. Hmm, quality and perhaps quantity of life?

I don't know if you can understand this if you don't have a terminal illness, but one ache, one bad day can be terrifying. The bad days can snowball quickly, as they did for Donna Peach and Roger Ebert. I feel very vulnerable, naked and unarmed. Those who knew me before my diagnosis know I'm a planner. Very deadline oriented. When it came to my work, I could do miracles with the right team. I told my boss today I should have saved myself a miracle. We will see. Maybe I did.

The thing is that we don't know. Unlike my work projects, I don't know what my deadline is. Don't know how much time I have left to clean my closets, raise my girl and teach Sweetie how to pay the bills online. Truth be told, you don't know how much time you have either. You probably don't want to think about it though. I can't avoid it.

And that brings me to the thought I want to leave you with: peace. I was raised a Roman Catholic, though I'm not a practicing one. Pope Francis intrigues me and so I've been following several Vatican Twitter feeds. His words today about the "joyful wonder" of being a Christian really touched me. In my opinion this peace can be sought and received from whatever you believe is a Supreme Being or life force. Whatever your faith, please consider these words. May you find peace in them, as I do:

"Of course we cannot live forever in [a state of] wonder. No, we really cannot. But it is the beginning. Then, this astonishment leaves an impression in the soul and spiritual consolation. It is the consolation of those who have encountered Jesus Christ”.

"First wonder, then spiritual consolation and finally, the last step: peace. Even in the most painful tests, a Christian never loses the peace and presence of Jesus. With a little 'courage' we can pray: 'Lord, grant me this grace which is the hallmark of our encounter with you: spiritual consolation and peace'. A peace that we cannot lose because it is ours, it is the Lord's true peace that cannot be bought or sold. It is a gift from God. This is why we ask for the grace of spiritual consolation and peace of mind, that starts with this joyful wonder of our encounter with Jesus Christ. So be it. "