Stage IV Snapshot: Broken Rib

Part of everyday life with bone mets is never knowing when a fracture is around the corner. I would have thought, at this time of year, my biggest risk would be slipping on the ice and breaking my hip. The actual culprit:

Yup, the dog. I was in bed yesterday when Mango came up and stood her front paws on my chest. A few hours later I noticed the pain. The good news is that the pain only lasts a few days. Ribs heal quickly enough. I know this because this isn't the first broken rib I've had since cancer came into my life, the last break was around Christmas. At the time, I blamed it on exertion while carrying the Kitchen Aid mixer up from the basement to make cookies.

This is life with Stage IV. Cookies, puppy kisses. Each risks a broken bone.

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!

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.

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.

Mackenzie King, My Orthopedic Surgeon

I still have a lot to learn about the medical system. For example, when I was told I would be seen by an orthopedist, I didn't realize he was a surgeon. Interesting guy. He introduced himself by way of saying that he loves operating. It's his thing. But... His mortgage is paid off. Bottom line of yesterday's appointment was, to paraphrase Mackenzie King, "surgery if necessary, but not necessarily surgery."

He explained that the CT wasn't sufficient to assess the risk I will fracture my leg. He sent me straight over for plain old x-rays of my pelvis and both femurs (thighbones). He will see me again in four weeks. In the meantime, I will see my radiation oncologist, and now she will have the benefit of the X-rays to decide whether to radiate. And, if my hip pain (which we all agreed could be psychosomatic) spikes, I'm to get on crutches and get to the hospital. Unlikely, I expect.

"Patient at Risk for Pathologic Fracture"

There it is. The last sentence on the CT scan report. The sentence the doctor didn't mention. "A lesion in the right femoral neck places the patient at risk for pathologic fracture at this location."

Google explained to me that the femoral neck is the top of the thigh one, just before the ball (head) that fits into the pelvis at my hip. It is a pretty vulnerable spot, particularly in Ottawa during such a cold, icy winter.

I usually get up with my daughter and walk her to the school bus stop. The last few weeks I have become increasingly nervous about out our walk. The stop is only a few houses away. But there is so much ice on the road, and a bit on our front walk, to be honest. It is time to hand this job over to Geoff for a while. I hate to do that. He has taken on so much of the household tasks since I got sick. I like to let him sleep in a bit in the morning. But the risk is too great.

If I were to slip, the chance of the femoral neck snapping seems to be high. Surgery would be required to fix it, whether it is pinning the bone together or replacing it with a prosthesis (as in hip replacement surgery). I expect it would be more disabling than my previous pelvic fracture. Since reading the CT report, I've been feeling some pain deep in my hip. The Tamoxifen I'm on can cause bone pain. Or maybe it is in my head. Maybe I'm making a mountain out of a molehill.

On Thursday, I see an orthopedist, and then next week, my radiation oncologist. They will be able to tell me more. Maybe the risk isn't as great as I fear. Perhaps Dr. M could use radiation to strengthen my bone. Having been off chemo since November, my bone marrow should be able to withstand the radiation. We'll see what they say.

But in the meantime, I think I best stay off the road.

October is Breast Cancer Awareness Month

A year ago today, I wasn't worried about the lump my gynaecologist had found on my breast.  It felt like one I'd had five years before on the other breast -- a fullness that went away after it had been determined to be benign. 

A year ago today I didn't know that the lump was invasive ductal breast cancer.

I didn't know that my weird blood test results were a reflection of the tumours that riddled my liver.

I didn't know that my aching back wasn't "out" but broken in several places.

I didn't know that most women who get breast cancer don't actually have it in their families.

And I didn't know that men get breast cancer.

I didn't know that in about 10% of the cases, breast cancer has already spread to distant organs before it's found. 

Nor did I know that metastasised breast cancer cannot be cured.

A year ago, all I know was that October = pink  = breast cancer.  I thought that breast cancer was an easy cancer.

Well, it wasn't easy telling my little girl I have Stage IV breast cancer.  No, this year hasn't been easy at all.

In the last year, I have had 14 rounds of chemotherapy, 10 radiation sessions, 4 CT scans, 3 MRIs, 2 echocardiograms and a MUGA scan.  I couldn't count the blood tests, appointments with doctors, nurses, and social workers.  Also, my freezer has been filled twice and I`ve been given at least a half dozen hats and two wigs.

Yesterday I power-walked 5km and raised $1295.00 for the Canadian Breast Cancer Foundation.  It will use that money (most of which was generously given by you, my readers) for awareness, support and research.

Because a year later, there is still no cure for breast cancer.  And I need a cure.

The Bean tells me that anything is possible.  Smart girl.

Chemo Update: February 19, 2012

I had my chemo treatment again last Friday.  As promised, the doctor reduced the Taxol dose by 20% and I believe he changed the dose of steroids given before the Taxol.

The session went as normal.  What was new was that my mom and dad came to visit, to see what the chemo was like.  They left as the Benedryl drip was ending.  At that point, Geoff came in and watched me sleep through the rest of the session.

Early in session, I noticed a dietitian speaking to some of the other patients.  Given the lost appetite I've been suffering after chemo, I may ask to meet with her myself.

That said, I haven't yet noticed any loss of appetite since Friday's chemo.  From the previous week's chemo session, my appetite left on Saturday and returned on Thursday.  I expected it to be gone by now, but it's not.  In fact, I really enjoyed my cereal for breakfast this morning.

The other thing that is new is that I noticed this morning that the swelling in my feet was virtually gone.  You wouldn't have believed the swelling I had on the tops of my feet.  But now I have a normally shaped foot.  You can almost see my ankle bone too!  This is incredible.  In fact, I went over to the scale and was amazed to see that my weight had dropped about 12 pounds since I was at the doctor on Wednesday.  That's really something!  A lot of water gone.

I have one non-chemo update for you as well.  I've virtually stopped using the walker in the house.  And I've been forgetting my cane here and there, which means I can walk short distances without either cane or pain!  To be truthful, I can't get very far without some pain in my lower back, but I feel like I have regained the strength I had in November before the pelvic fracture and my hospitalization.  Again, this is great progress.

Pretty much all good news.  Hope that pleases you as much as it does me!

Oncology Results: January 18, 2012

First, thank you for all of your good wishes and prayers since my last post.  I am sure they helped.  And I am sorry to keep you waiting with this post, but I have been terribly drowsy for the last several weeks, to the point that I couldn't stay awake reading the morning newspaper or wait for the doctor's appointment.  During that point in time, my Sweetie posted for me.  You can see his summary on the Geoff Takes On blog, here.  Despite today being a chemo day, and me having slept most of the day, I'm feeling more energy this evening.  So, without further ado, here's my take on the oncology results we got on Wednesday:

The previous week, I had had two tests, an echocardiogram and an CT scan of my chest, abdomen and pelvis.  I was worried that in the month or so when I didn't have chemo that my cancer might have spread.

First, the echocardiogram, nothing had changed since the one I had in the Spring for unrelated reasons.  My heart is good.  I have mild regurgitation in my mitral valve, but that doesn't seem enough to call it mitral valve prolapse.

And then there's the CT scan.  Geoff and I were holding our breath.  I don't know if I'd really given you a sense of the liver tumours I had.  This CT scan described them as "innumerable."  That's not great on its own, but the rest of the news is.  There were a couple of large tumours that had been measured last time.  One of them went from 4" by 3.6" down to 3" by 1".  That is a major change!  Another went from 1" down to 0.35".  In the words of the CT report, there is, "marked interval [since last test] improvement in hepatic [liver] metastases  consistent with partial response [to the chemo treatment]. No new metastatic disease is seen inter-abdominal [No mets in other abdominal organs]."

They also said that the fractured pubic bones are healing on both sides of the body.  And I had been told the break was only on one side.  I also learned there are fractured ribs; I can feel them, now that I know they are there.  That explains the shortness of breath.

I have to laugh at they way they write the report.  It's by body part or organ.  For example:

"Lungs:There is no interval development of bilateral subsegmental atelectasis [collapse of the lungs] with no consolidation or suspicious pulmonary nodules." In my own words: blah, blah, blah, no cancer in the lungs, yay!

"Heart: Grossly unremarkable. ..."  Hmm, I suspect some of you would disagree.  On the plus side, what it means is that there is no cancer in my heart, which is very good news.

I won't go into detail about the bone metastases, since the CT scan isn't the best test to measure them.  We know they're there and there are a lot of them.  'nuf said.

This is very good news for us.  Geoff was visibly relieved during the appointment, thank goodness.  Personally, I thank God for the good news.  I know the doctors did an awful lot: choosing the right chemo is important, as is radiating the right spots.  After that, prayer makes the difference in the end.  So thank you all for your prayers and good wishes.

My oncologist says there's good reason to be optimistic this disease can be managed for many, many years.  That's what we're looking for.  Many, many years.

p.s. Strangely, this CT didn't measure the breast lump.  Could it not see it?  We can't feel it.

What I've Got, Exactly

As I said in my first post, I have been diagnosed with Stage IV Invasive Ductal Breast Cancer.  That means that the cancer has spread beyond my breast and lymph nodes to other parts of the body, in my case the liver and bones.  Usually it goes into the lymph nodes first, but my cancer hasn't been found there; it seemed to go straight out to the liver and bones.  I don't know if that's uncommon, but it isn't a neat fit in the breast cancer staging guidelines, a summary of which you can see at this link.

As part of the biopsy, breast cancer is examined to see if it has any of three particular receptors:  estrogen; progesterone and Her2.  My breast cancer is positive for all three receptor.  On the negative side, Her2 positive cancers tend to be aggressive.  On the positive side, positive receptors give the doctors more options, and in the case of Her2 a more powerful option, for fighting the cancer.

At the moment, Stage IV breast cancer can't be cured.  It's treated as a chronic disease.  As my medical oncologist said, my cancer is through me head to toe (literally in my bones), so he's going to treat it head to toe.  This is why my treatment started with chemotherapy, unlike many women's breast cancer treatment, which would begin with surgery.

I can see some patients wanting to start with surgery to get that tumour the hell out of their breast as quickly as possible.  I didn't look at it that way.  And as it turns out, the chemotherapy I've had, which started in late October, has already noticeably shrunk the breast tumour.  I'll have a CT scan next week that should be able to tell us exactly what impact the chemo has had to date.  I have mixed feelings about getting the results.  On the one hand, I can tell, and the doctors have confirmed that the breast tumour is smaller to the touch than it was.  On the other hand, I missed about a month's worth of chemotherapy as a result of having been hospitalised and receiving radiation therapy in late November. I'm afraid of how much the cancer may have advanced during that time.  The scan should be able to measure the breast tumour as well as the liver tumours, of which there were many.  It won't have as much detail about the bone metastases (mets).

What I can tell you about the bone mets is that they have weakened my bones in a number of places, to the point of causing fractures.  I have a couple of compression fractures in my lower spine as well as a non-displaced pelvic fracture.  The radiation therapy last month focused on these areas.

The greatest part of the discomfort my cancer has caused me is due to the bone mets and fractures.  I need a walker, and in tight spaces a cane, to get be able to walk.  I really can't walk one step under my own speed.  The walker helps to keep the weight balanced on both sides of my body so that I don't further damage my pelvis.  If the pelvic fracture were to move, become displaced, I would likely need surgery to reposition it and secure it with a pin or strap.  I don't want that.  The recovery would, I'm sure, be much longer and more painful.