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.

Sometimes I Lie

Little white lies. I feel I have to tell them. Why? Mostly for the sake of the Bean, my little girl.

Frequently in the neighbourhood, at school, or this week at the dentist, people ask me why I am using a cane. I explain that I was diagnosed with breast cancer and it has spread to my liver and bones. God bless them, they usually say something like "but the cancer is all gone now?" Uh, well, no. "But you'll be alright, won't you?" That's when I tell a modified version of the truth. I say that the doctors treat it as a chronic disease, like diabetes. If I mention that there is no cure, I do it in my sweetest, most hopeful voice. Why? BECAUSE MY DAUGHTER IS STANDING RIGHT THERE!

Yes, the doctor really is treating it like a chronic disease... because there is no cure.  Trust me, it's not like diabetes. With all due respect to my dear friends with diabetes, it's not the same. They wouldn't want to trade diagnoses with me.

In front of the Bean, do you think I am going to mention that breast cancer is likely to kill me before she grows up? Come on, nobody wants to hear that. Especially me.

I really wish there was meaningful awareness of breast cancer. I wish people understood how common it is, that there is no cure. Damn Lance Armstrong and the Pink Police for convincing everyone that cancer is easy to fight. It isn't. It is an insidious demon attacking me daily. I fight it with handfuls of pills, IVs and radiation. I fight it with every stubborn breath I take. But it isn't easy. Unless you ask me in front of my girl, in which case I'll say, "I am fine, really. The doctors have it under control."

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.

"Don't Count Spots!" and Other Friendly Advice from my Oncologist

I saw my oncologist yesterday and he took the hammer out to get it through my head to stop worrying.  And I have been worried.  I have a lot of tumours in my liver and bones.  Unlike some Stage IV women with a single spot here or there, mine are "numerous."  The radiologists can't even count them all.  And what if they move into my lungs or heart or brain?  Dr. G said, "Don't count spots!"  Stage IV is Stage IV as soon as there is one tumour outside the breasts or lymph nodes.  There is no Stage IV and a half.  No Stage V.  It's Stage IV and the treatment is the same whether it's one spot or "numerous" ones.  I need to relax...

He also clued me in to some more of the side-effects I've been suffering.  My runny nose and constantly tearing eyes?  Chemo.  I thought it was my allergies but no... which means it's not going to stop anytime soon.  I can try artificial tears, or if necessary, the doctor can give me steroid eye drops.  And the swelling I feel on my back, near the latest fracture, is just swelling.  That's common after radiation.  By the way, my back is still "tanned" and itchy from the radiation I got in November.  I had no idea it would last so long.

I asked my doctor if it was OK to try to lose some weight.  He was ambiguous, to be honest.  It sounds like it's not necessary for me to keep on extra weight as an insurance policy -- because if I stopped eating suddenly, he would treat it right away.  On the other hand, women gain weight with breast cancer, and in truth I had lost weight since December, back when I was at the worst of the ankle and leg swelling.  I think the bottom line is that I can do what I want.  Next question is for me:  do I want to work at losing weight?  Hmm.

Next, the big question:  could I have a drink?  Because of my abnormal liver results and "numerous" tumours, I haven't had a drink since the early Fall.  And some days I really would like one.  Dr. G said "absolutely!"  My liver results are now normal, despite the tumours.  I can have one to two drinks a day if I want.  That would be more than I need, but now that the sun is shining, I am thinking of sitting in the yard with a cold glass of hard apple cider.  Mmm.

About that new chemotherapy treatment that has been in the news, TDM1, he says it's available in Ottawa.  Clinical trials are continuing; approval should come relatively soon.  He'll look into whether and when I might get it.  That said, he did agree that it makes sense to continue the Taxol, Herceptin, and Pamidronate combo as it is still working.  He says all good doctors have Plan B and Plan C at the ready.  And he's taking good care of me.

What Breast Cancer Looks Like: Lucia Alloggia

Geoff and I have often mentioned how wonderful our neighbours are.  We've focused on how kind and generous they are, but one, in particular, is also very talented. 
Let me introduce you to Lucia Alloggia.  In 2010, Lucia was diagnosed with breast cancer and underwent surgery, chemo and radiation.  On her website, her 2010 gallery is made up of four paintings chronicling her experience with breast cancer:  The Mastectomy; The PICC; Chemo; and Radiation.  They are fantastic paintings. 

Chemo is particularly touching.  With Lucia's permission, I will reproduce it here:

If you have had chemotherapy, even if it's gone well, you will recognize yourself in this picture.  To me, the slumped shoulders say it all.  Like they say, a picture tells a thousand words.

I encourage you to visit Lucia's website here.  In addition to the cancer series are many portraits, and paintings modelling the styles of the masters.  And did I mention that Lucia is as generous as she is talented?  You'll also see paintings she has donated to the restoration of an earthquake-damaged church in the Italian town of Camarda, where she is from.

I hope you enjoy her paintings as much as I do.  Lucia can be reached by email through the contact form on her website.