healing

Well it's not been linear but I definitely am healing well.

The drugs have made it hard to concentrate and type but things are progressing well. Today is the first day that my fingers and my brain seem to move more in concert.

And now I have treatment tomorrow.

So please don't worry if I don't blog. I'm doing fine - and expect to get back into regular writing next week.

Thanks so much for all the love and support from near and far.

It means more than I can say.

it is what it is (and what it is is ok)

Herceptin makes me feel lousy. Or maybe it's the Demerol they give me from flopping around like a fish with a fever. Either way, after every treatment I feel achy and hungover for a couple of days.

It's a not nearly as bad as when I also have chemo (and I bounce back more quickly) but I'm still really dragging my butt around, when I bother to get up at all. I'll go for a walk later but it will take every ounce of the meager willpower I possess to get myself dressed and out the door.

I saw the cardio-oncologist again on Monday and that appointment went as well as could possibly be imagined. My heart was slightly damaged by the Adriamycin but has remained just below normal, since being on the Herceptin. The verdict: I can continue with Herceptin. I don't need to have heart scans every three months, as I have been. I don't even need to be followed by a cardio-oncologist unless my ejection fraction dips below 45 (it's currently around 49) or I experience symptoms of heart failure (um, yeah).

It appears that this whole heart scare was a tempest in a teapot - a reminder that when it comes to treatment of women living with metastasis, doctors are just making stuff up as they go along. They really don't know the long term effects of the drugs that keep us alive because our being alive and in remission is still so unusual. It's a bit unnerving but, given the alternative, I'm happy to serve as a human guinea pig.

Cross-posted to Mothers With Cancer. 

not worried

I had a heart scan at the hospital today. 

I rode my bike there up some pretty steep hills.

I was so engrossed in my book, I didn't hear the technician the first time he called me.

I fell asleep during on the scan table.

I guess I'm not too worried.

being the first

It turns out that a cardio-oncologist is a doc who knows something about the heart and oncology drugs. The guy I met yesterday looked way too young too have studied for that many years but really did seem to know his stuff.

Perhaps I'm just getting old.

Some things I learned:

My heart was permanently damaged by the Adriamycin. As a result, my ejection fraction has been bouncing around the low range of normal for years.

Echo cardiograms have a ten point margin of error, so my ejection fraction may not have dropped as much as it appeared.

I have no symptoms of heart failure.

Should I have the symptoms of heart failure, I should go to emergency (no kidding!).

There is no reason that I cannot engage in vigorous excercise (there goes my excuse for not running).

I don't need to stop Herceptin (awesome news).

I might have to go on a drug that protects my heart. The doc is on the fence about it right now but if my ejection fraction drops much more, than he will prescribe it.

Even then, I still won't have to stop Herceptin.

I am being sent for a MUGA - a different kind of heart scan - to see if it picks up anything different than my echo.

I mentioned that there must be some uncertainty, given that he likely hasn't seen many people who've been on Herceptin on a long term basis.

He told me that I am the first. But that there will likely be many more.

ambiguous ambivalent

I had abdominal and thoracic CT scans a couple of weeks ago. For the first time since July 2007, I was not simply told that all is clear.

But I wasn't given bad news either.

I was told over the phone that some of my lymph nodes look "suspicious" but as my oncologist conveyed via his nurse, "that could be anything."

I was just recovering from a bad cold when I was tested, so that could have inflamed by lymph nodes. The only thing to do right now is wait, go in to see my oncologist on October 10th and then - I don't know. Do another scan and see if there is any change?

I've been told not to worry, so I'm working on that and on patience.

Meanwhile, I have a brain MRI scheduled for next week. This is purely routine, as herceptin does not cross the brain blood barrier. I have been fretting about it because I did not enjoy my last one - it's so unbelievably LOUD! I'm bringing company, extra ear plugs and lorazepam.

I'll have the results for that on October 10th as well.

So I'll be sitting tight, keeping busy and focusing on the things over which I have some control.

Anyone want to sit and knit somewhere or come help me organize my house?

"Worry has an anxious and unfocused quality. It skitters subject to subject, fixating first on one thing, then on another. Like a noisy vaccuum cleaner, it's chief function is to distract us from what we are already afraid of." - Julia Cameron, Walking in this World.

this could be me

I've been on Herceptin for nearly five years. I think I'm alive because of it. And I'm fervently hoping that my heart bounces back quickly so that I can continue with treatment. 

However, should I have any kind of relapse, funding for Herceptin will be withdrawn, despite the fact that studies show that switching up treatment regimens (pairing another drug with Herceptin) can give good results.

Earlier this year, breast cancer patients and advocates in Ontario fought for and won access to Herceptin for women with early stage breat cancer. Now, we must lobby to extend this access to women with metastatic breast cancer who experience a progression of the illness.

From the Canadian Breast Cancer Network:

We are reaching out to you today to let you know about the inequitable access to care for people living with HER2-positive metastatic breast cancer in Ontario.

The Issue:

HER2-positive metastatic breast cancer patients in Ontario who received a treatment called Herceptin when they were first diagnosed and who responded well to initial treatment are being denied access to the treatment should they relapse.

This is happening despite recommendations from Ontario oncologists and clinical evidence included in a report from Cancer Care Ontario, which states that the continued use of Herceptin in combination with chemotherapy is a valid treatment option for those whose breast cancer has progressed on Herceptin.

Even though there is evidence to support Herceptin beyond progression, government funding is not in place in Ontario – one of the only provinces to deny this treatment regimen for HER2-positive metastatic breast cancer patients. The BC Cancer Agency recently approved funding for Herceptin for HER2-positive metastatic breast cancer patients who have been previously treated with it.ii
How can YOU help?

Share your story! If you or someone you know has HER2-positive metastatic breast cancer and are currently being denied Herceptin treatment in Ontario, we want to hear your story. For more information, please contact me directly at 613-230-3044 ext. 221, amacisaac-butler@cbcn.ca

just slightly below par

On Wednesday morning, I had an appointment with my oncologist. I had confirmed that we would do it over the phone and kept my phone handy to await is his call.

At 11:00, the nurse who works with Dr. G. called to say that I would be hearing him before the end of the afternoon, thus giving me several hours to work myself into a state of high anxiety. I'd had an echocardiogram and two CT scans on August 29 and I knew that my doc would have the results.

I had no reason (other than history) to believe that the CTs would reveal anything bad and I'd managed to pretty much forget about the results until the day I was to receive them. On that day, I became a nervous wreck. I jumped every time the phone rang and when the call I'd been waiting for finally came through at around 5pm, I was a mess.

My oncologist apologized for the delay, and, as always when I hear his voice, my annoyance and anxiety dissolved. He told me that both CTs were fine. I have lots of scarring on my liver (from the cancer) and a little scaring on my lungs (from the radiation) but that there was no sign of cancer anywhere.

Excellent news.

Then I asked about the echo, which surprised Dr. G. He didn't have the results in front of him and had to go look them up. When he did, he sounded a bit taken aback.

My ejection fraction is at 48%. The normal range starts at 55%, so I'm really just below that but it's enough of a concern to send me to a cardiologist and to cancel next week's treatment.

My concern is not that there is permanent heart damage (although it's a bit freaky to think that my poor heart is a bit over-stressed) because Herceptin damage is usually reversible. My fear is the length of time it will take my heart to bounce back and what my treatment options are in the interim. And what if the toxicity has built up to a sufficient level that long term treatment with Herceptin is no longer viable?

This drug has been my magic potion, the one I credit with my remission and the fact that I'm here today. I'm not ready to think about giving it up.

And I don't have to. Not yet. Going to try and save all my questions for the cardiologist and, in the interim, carry on with my happy, busy life.

Update: I have an appointment with a cardio-oncologist on October 3rd.

Cross-posted to Mothers With Cancer.

done with the "good girl"

Since the beginning of my treatment, I have asked questions and attempted to make the most informed decisions possible. I've worked at being a good self-advocate without being difficult, just because I'm pissed off and fed up.

Sometimes that's a challenge.

I am, however, fundamentally, and through lots of conditioning, a good girl.

I've put up with a lot of crap and maybe endured some things I didn't need to, for the sake of keeping the peace, getting through and not rocking the boat. The need for approval runs deep in this girl.

Tomorrow, I go in for further testing on my port. The nurses in the port unit are work in very cramped conditions and seem overwhelmed. Last time I had an appointment, I waited for over an hour to be seen and was then treated like I could not possibly know anything about my own treatment or medical experiences.

After five painful attempts to access my port, they filled it with fluid (what the nurse at the treatment unit the next day, called "Drano for ports") that stayed in overnight. That didn't work. When I next spoke the port-team coordinator, I was told to come in for a "portogram", an X-ray with contrast fluid inserted, so that it will all show up better on film.

I asked "Can you tell me why I need to do this? We know it's broken. What will the portogram tell us that we don't already know?" 

The coordinator seemed taken aback but answered readily enough: If the port does not seem to be obviously broken, they can try a slow flush over four hours of the same fluid that sat in my port overnight a few weeks ago. Apparently, pushing the fluid through slowly can be more effective.

All of this begs the question - Why didn't we just do these things in the first place? Why did I have an ordinary Xray and why the overnight with the Drano?

If the portogram shows that, after more than seven years, my trusty port is truly broken, they'll have to replace it. It's relatively minor day surgery, and worth it to have a working port, as 5 years of chemotherapy has wizened and toughened my poor little veins. The two treatments I've had since it stopped working have been stressful, time-consuming and painful. My arm is still covered in bruises. A working port-a-cath makes treatment so much easier.

But there is a catch. They want to put it in on the other side (it's currently on the left). This would mean another very visible scar, just below my clavicle. And because there is very little fat left on the mastectomy side, the port itself will likely protrude as well. The area just below my clavicle on the right side is already sensitive, the idea of adding a port to that side is extremely unappealing.

I know that, in the grand scheme of things, this is nothing but I'm feeling very annoyed. I think I'm going to dig in my heels, this time. If my port worked for 7.5 years on the left side, I see no reason that a new one can't work on that side again. 

After everything I've been through, it may seem like an odd place to draw the line but this good girl has had it. After tomorrow, no more tests. It either works or it doesn't. And I'm not giving up my left side port without a fight.

twilight zone

Nurse (shouting from the other room): "How old is your port?"

Me: 7 years

Nurse (still hollering): Holey Moley. That's old. (pause) Are you sure?

Me: March 2006.

Nurse: When was it last accessed?

Me: 4 weeks ago, tomorrow.

Nurse: What are you getting?

Me: Herceptin.

Nurse: For 7 years? 

Me: Yes.

Nurse: No. Herceptin is for one year. 7 years is not possible.

Me: It is when you're metastatic.

Nurse: Are you on (name of drug I don't remember)?

Me: No. Herceptin.

Other nurse: It's Herceptin. I checked her chart.

Unbelievable.

treatment week

you can't always get it

Mixed results from my appointment with my oncologist yesterday.

First of all, I was late. As I was riding to the hospital, I noticed that it was getting harder and harder to pedal. When it actually became impossible, I got off the bike and checked. My front brake was squeezing the front wheel. Hard. I think I had been riding like this for some time - and tightening every time I braked. I just thought I was tired and out of biking shape. I solved the problem by releasing the front brake entirely (I'm sure that's not the safest thing). This meant that when I hit the big hill before the hospital, I was already wiped out from pedalling with all that friction.

I arrived at the cancer centre twenty minutes late and a hot, red, sweaty mess.

When I finally saw my doc, he easily agreed to a break in July (which is a good thing because I have non-refundable air tickets and a pre-paid hotel for BlogHer). That went so well that I (without making eye contact) asked for August off as well.

The answer was an unequivocal "No."

I didn't argue with him and I listened patiently as he reminded me that I need to think in terms of a chronic illness that we need to keep treating. I can't really take a (longer) break because we need to keep managing the illness.

I told him that I understood. That I know that the treatment I am on is our first line of defence and that the longer I stay on it, the more chance there is for the second, third, fourth and fifth lines of defence to be developed and improved.

He said, "Well, that makes me feel better. When I saw the note in your chart [that I wanted to ask for two months off], I got a little worried."

I reassured him that I am not planning to bail on treatment, I'm just feeling ground down and fed up.

Dr. G. also reminded me that, "Although, it's great that you have remained with no evidence of disease for so long, there is likely cancer somewhere in your body. Statistically, there is something there." But then he added, "But we don't know enough about Herceptin in the long term. Maybe you're cured. We just can't know."

"Cured." Nice word, that.

And I get it. I really do. And I know that while I was incredibly unlucky to end up with metastatic breast cancer (especially in the liver), I have been fabulously, gloriously fortunate to end up in remission. I know so many other wonderful women (Jeanne and Rebecca, for example) who have had to move to regimens that are harder to tolerate.

I can accept the fact that I will be in treatment for the rest of my life, with only very short and very occasional breaks. I can even make the best of it. And I can feel pretty positive most of the time. I think I am also allowed to get pissed off every once in a while.

On another note, my spouse wants you all to know that the Xmas tree in my back yard is "next winter's firewood." It hasn't been chopped, though. Maybe we are going to have a bonfire in my living room.

short term planning

I kind of left you in suspense yesterday.

I was sitting an exam room, waiting to see my oncologist to discuss whether I could continue my break from chemo. 

Here's what happened next:

We waited.

We played a little Lexulous.

I knit. My hands shook a little.

And then the door swung open and Dr. B. entered the room. 

Dr. B. is not my oncologist. The cancer centre has a title called GPO (which I assume means general practitioner - oncology) for doctors who work with the oncologists. I hadn't seen Dr. B. in more than a year and without hesitating, we hugged each other - something I've never done with any doctor. She's wonderful and she's the only doctor I trust as much as my oncologist.

After a physical exam (liver is where it should be and the size it should be. Chest sounds fine) and looking over my bloodwork (everything normal), we had the following conversation:

Dr. B.: "I'd bet you'd like to extend this break from chemo."

Me (nodding vigorously): "Yes!"

Dr. B.: "For the summer?"

Me: "Or longer? I'd love to think about longer term plans."

And...she shook her head. She said, "When it comes to metastatic breast cancer, there are no 12 month plans."

While it may seem like forever to me that I've been at this, it really is still pretty new. And as I've written before, many times, there is just too much uncertainty to make any longer term treatment plans or even to be absolutely certain what choices are the right ones.

It was very good having Tim there, though, as he brought a different perspective to the table. I wanted to choose between a short break and an indefinite one. Tim's concerns were more about the risks of taking even short breaks from chemo. He loves me and he wants me to feel well but also to stay healthy.

But Dr. B. explained that the break from chemo is not just to give me some respite from side effects (although I needed that, both physically and emotionally) but to help my immune system and bone marrow to rebuild so that chemotherapy, when I need it again, will continue to be effective. She also said that most stable metastatic breast cancer patients need to take breaks long before I did.

This was a breakthrough moment for me. I've been feeling like my body failed me by becoming run down and developing more side effects. I felt like I was wimping out by feeling an emotional need for a break. I felt that I just wasn't strong enough.

I felt ashamed.

However, it turns out that I'm not taking an irresponsible risk by taking a break from chemo. I'm readying my body for whatever lies ahead. And I'm not weak. I've been doing this for more than five years, while continuing to live my life. I'm actually pretty damn tough.

It was a great appointment. I feel relieved of an awful lot of guilt I didn't know I was carrying around. I feel hopeful. And my step was a little lighter today.

So for the next three months, I'll continue on the Herceptin. In early September, I'll have a brain scan (because Herceptin doesn't cross the brain blood barrier) and an abdominal scan. I'll do more bloodwork. And we'll plan for the next three months.

not so jaded after all

Yesterday, I had an appointment with my oncologist, the first since our decision that I should take a break from chemo and do Herceptin only for three months.

I usually do my appointments over the phone but I decided to go into the cancer centre so that I could have a physical exam and meet with him face to face. Also, I wanted Tim to come with me, so that he would get the same info as I did first hand and have a chance to ask questions.

One of the great things about doing appointments on the phone is that I can carry on with my life around the house as I wait for my call. I was reminded of this after waiting first in the waiting area and then in the exam room for nearly an hour.

But it was worth it.

The first person I met was the nurse who works with my oncologist. It was the first time we met face to face. After checking me in, she hesitated for a moment, then looked me right in the eyes and said, "I read the article you wrote for the CBCN newsletter (after the conference I attended last fall). It was wonderful. You are very inspiring."

I hope that I sounded as pleased as I felt when I thanked her. It always means a lot to me when someone is moved by my writing but to hear that a nurse who hears all kinds of stories every day was inspired by me...I was floored.

10 in june part one: health

The last month has been challenging, as far as my health is concerned. There is nothing seriously wrong with me and as far as the cancer is concerned, I'm in fine shape. Instead, I've been dealing with some unpleasant and uncomfortable digestive issues. Whether this is due to my age or the toll of long term systemic cancer treatment, I don't know. I just know that, by the time I went to see my doctor, I was feeling prettty miserable.

I suspected my gall bladder was the source of the problem but we had the benefit of a recent abdominal CT scan that showed that organ to be fine. My doctor diagnosed me with Gastroesophageal Reflux Disease (or GERD) and instructed me to stop consuming coffee, tea, chocolate or coffee (my immediate response was the somewhat ironic, "I'll die!" She also gave me some medicine. 

After a couple of weeks, I do feel very much better. I've only been eating tiny amounts of chocolate and I have had a couple of pints of beer (which didn't seem to bother me). What does turn my innards inside out is coffee, something I find to be fairly tragic. I'm now drinking a mug of Matcha green tea every morning and then, only occasionally having a single mug of half-decaf (and I am coming to accept that this needs to be a pretty occasional thing). 

I was feeling pretty bummed out about all of this (haven't I already been through enough?) until one day I was out walking the dogs and I got to thinking. What if I chose to look on this as an opportunity to clean up my diet?

I've also come to realize that fatty foods or eating anything too quickly can give me pain and heatburn. But I should be avoid junk food and mindless eating anyway, so that shouldn't seem like a bad thing.

When life gives you lemons, make lemon water (which also really helps with digestion and I like how it tastes).

Next visit to my doc, I'm going to risk being labelled a hypochondriac and ask to be tested for Celiac's disease (my sister has it, and although I've had the blood test, I know that it can result in false negatives) and also asked to be tested for a stomach bacteria called H. pylori (because a friend just tested positive and really I am a bit of a hypochondriac.

Keeping all those things under consideration, here is the part of my "Ten Things" to do list that addresses health:

1. Make soup twice. I've been having fun on this soup adventure. I've already made chicken soup this month. What surprised me though was that I took a recipe from my nutrionist and altered it significantly to make it more flavourful. On the heels of my made-up cabbage soup from last month, I am displaying a willingness to depart from recipes that I have never been brave enough to do. It pleases me enormously.

2. Do an average of sixty minutes of cardio five times a week (a total of 300 minutes a week). 

3. Start the Running Room beginner program and run/walk three times a week. I'm on track and on week two, which means I'm alternating one minute of walking with one minute of running for twenty minutes.

4. Follow the diet prescribed by my nutritionist, while cutting mysellf some slack (ie letting myself have a cookie or a piece of chocolate every day, eating exactly what I want once a week, cutting down on carbs and increasing fruit and especially low sugar veggies). If my approach isn't moderate, it's not sustainable.

I'm putting the strength training on hold in the hopes that July will be a little less busy and my gut will be healed enought that the thought of sit-ups doesn't make me puke (although I'm not sure if this is a real problem or just a dislike of sit-ups).

I'll save the rest of this month's goals for another post. What's on your to-do list for June?

well, hello there

Yikes!

It's been a while, hasn't it?

I seem to have lost my blogging mojo. I remember a while back when Average Jane wrote that her blogging had been derailed (my word, not hers) by Twitter and Facebook. I get that now.

Whenever I have a quick observation or a link to share, I can gratify myself instantly with Twitter (I'm lauriek, by the way). And while each tweet does go to Facebook and the sidebar of Not Just About Cancer (on the right - see it there?), it hasn't done much for my blogging.

I don't want to give up the blog though, so I'll try and re-commit to posting regularly (how's that for hedging my bets?).

On the cancer front, there is a little news. I loved having a break in April. That month also brought another clean CT scan. My oncologist continues to be happy with how things are going (or not going, really).

We talked a bit more with about the weirdness of being in ongoing treatment (with side effects that are cumulative, both physically and emotionally). He talked frankly (one of the things that I love about him) about how, in my case, he really has no idea what to do.

We don't know what would happen if I were to take a longer break from treatment or stop it altogether.

"You're a riddle, wrapped in a mystery, inside an enigma," he said, quoting Churchill.

He said that, theoretically, we could start our own clinical trial, where half the women stop treatment for three months and half continue as I've been doing.

"But then what do you say to the women in the first group, if the cancer comes back? 'Oops?' 'Im sorry?' " (I'm convinced that the man lies awake at night wondering about these things. His compassion is another thing I love about him).

He has a way of putting things into perspective for me.

I had planned on asking for another break in six months but he surprised me by suggesting I take a break in August (hooray!)

He also said that, some time in the future, he's not sure exactly when, he's going to feel ready for me to take a longer break. Meanwhile, I'll have fewer appointments with him and, unless I'm worried about something, I can call them in (another hooray!).

I am very pleased about all of this but I admit to also feeling a little blue. I'm still dealing with some of the "grey area" fallout. It's really hard to articulate (and I feel guilty for even complaining. Guilt would be a good subject for a whole other post).

Life is a funny thing. And it's really hard to plan even five years ahead, because you never know what's going to happen. I'm trying right now to return my focus to living in the moment, accepting what is and reminding myself to notice the good things.

not as simple as it would seem

As someone living with metastatic breast cancer, I pay keen attention to the development of new cancer drugs. And of course I pay particular attention to the drugs that are likely to one day benefit me.

I have been on Herceptin for 7.5 years. My response was rapid and complete and there is no sign that the drug has stopped working. That doesn't mean, however, that I don't worry about the future and how I will proceed once I come to the end of the line with this miracle drug.

Enter trastuzumab emtansine, or TDM-1, as it was more commonly known. Over the last couple of years, I watched with great interest as clinical trials occurred all over North America. I have been personally in touch with several women who had as thorough a response to TDM-1 as I did to Herceptin. It was very exciting.

Then the trials ended and we had to wait for Health Canada to grant their approval. When that hurdle was cleared, I breathed a sigh of relief. Unfortunately, the sigh was a little premature.

The time between Health Canada approval and provincial funding can be long and complicated. Once Health Canada grants its approval, a body called the Pan Oncology Drug Review (pCODR) assesses the drug, a process that can take up to 149 days. After pCODR makes a recommendation, each province decides if it will fund it. And while this is happening, Ontario, unlike some other provinces "...does not have a mechanism in place that would grant cancer patients access on compassionate grounds to a drug that has been approved by Health Canada."

I heard last week from the Canadian Breast Cancer Network that TDM-1, now known as Kadcyla, has been approved for funding "for the treatment of patients with HER2-positive, unresectable locally advanced or metastatic breast cancer who have received prior treatment with trastuzumab (Herceptin)and taxane". Phew.

[Update: I learned from Delaney (see the comments and the Toronto Star interview) that OHIP funding will only be granted for "second line treatment." Should I need Kadcyla, it will be for third line treatment, as I will already have done my first 6 rounds of TAC (first line) and then the vinorelbine and Herceptin combo (second line). I'm only on Herceptin now but the treatment that follows will be third line. That means I'll only get Kadcyla if my private insurance will cover it. This despite the fact that I have known women who've had Kadcyla as a third line treatment, with great success.]

CBCN is urging voters to contact "local candidates and ask them their stance on improving access to breast cancer treatments." Improving access to cancer drugs is also a goal of FairCancerCare.ca. If you haven't already signed our petition, please do so today. You can also ask your local candidates to sign our pledge to advocate for fair cancer care in Ontario. This is super easy to do and takes almost no time at all via the website.

Meanwhile, I've also heard from CBCN that a drug that crosses the brain-blood barrier is in a phase 2 clinical trial. Will this drug be as effective as it promises to be? Will it be available by the time I need it? 

I'm holding my breath a little.

snarky brilliance credit: Andrea Ross

in translation

The cancer centre has implemented something new. When patients check in for treatment, we're asked to fill out a questionnaire related to our well-being (it has some acronym but I can't remember it). We're given the option of filling it in on a central computer but I'm really squeamish about germy public terminals. I always ask to fill the thing in manually (furthering my feeling that I am more of a Luddite than some of my seniors).

Filling out the form involves reading statements such as "I am in pain" and then circling a number between 1 (no pain) and 7 (excruciating pain - or something like that). Most of my numbers were very low except for the ones about my emotional well being and sleep habits. My answers resulted in the following conversation with the well-meaning nurse who checked me in for treatment:

Nurse: 

"You're depressed. Why?"

Me: 

"I'm just a little blue. Five years of doing this is a long time." (Translation: "I'm pissed off and fed up and I have survivors' guilt.") 

"I'm seeing someone at the psychosocial oncology centre." (Translation: "I don't want to talk about it with you, in front of the all the strangers in the room"). 

"The crisis is over and now it's all hitting me." (Translation: "I think I have PTSD. Did I mention that I'm pissed off and fed up?")

Next time, I'm stuffing the damn form into the bottom of my purse.

cash would be nice

The last time I checked in for chemo, I accidentally handed the receptionist my Subway card, instead of my green hospital card.

She thought this was so funny, that she showed everyone in the room. I pretended to be angry, trying to grab the card back. It felt good to laugh in that, sometimes sad, place.

I told her though, that my subconscious had been at play. I gave her the Subway card because I feel that after so many rounds of chemo, I should get some sort of bonus prize.

ask and ye shall.

Last night, I had dinner with my good friend Sharon, who has twice been treated for breast cancer. She's well now but we got to talking about asking for help during treatment.

We both had teams of people, providing all kinds of support during our health care crises. We were fed, entertained and accompanied to appointments. My kids were distracted and cared for, my dog was walked. My friends even paid to make sure that someone would come and clean my house while I was recovering from surgery.

To me, feeling healthy and strong again means requiring a lot less help. I speak with my oncologist over the phone. I breeze through echocardiograms. I walk or ride my bike to appointments. I even go to my regular Herceptin treatments by myself most of the time.

I feel fine about all this. I like being independent and I don't want to ask people for support when it's really not needed.

But sometimes it is.

On May 2, I have a brain MRI. These are always fraught with anxiety for me. My head is wedged into place and then encased in a small tube. And it's unbelievably noisy. I'm reasonably good at self-soothing and yogic breathing but as I force myself not to mind the physical discomfort, I start to worry about results. What will the radiologist see in my images? What can the technical staff see, as they test is being done?

There is not enough meditation or Ativan in the world to make this a pleasant experience.

Tim has come with me to my last few MRIs but on May 2nd we have a child care conflict. I was contemplating going alone when I was reminded by my conversation at dinner that there was another option: asking for help. 

When I got home, I logged on to Facebook:

Within minutes, I had a friend who offered to go with me and someone who said they'd be backup. And there were so many others who couldn't go but who sent their love and support or said they'd be there with me in spirit.

And they will be.

Note to self: Ask for help, even if you think you don't really need it. You'll be very glad you did.

how it's done

Everyone makes mistakes. And sometimes things go wrong that are not anyone's fault but someone has to take responsibility for making things right.

Over the last couple of years, I have come to realize that this is a deeply held value of mine, one I am trying to share with my kids. Mistakes don't necessarily make me angry but I can get royally pissed off profoundly annoyed when anyone - adult or child - tries to shirk responsibility. On the other hand, when people step up, acknowledge their mistakes and make a genuine effort to make things right, my resentment tends to evaporate entirely.

Some examples:

1. A few weeks ago, a received a notice from the Ottawa Public Library that a digital book I had ordered was ready for download. The same day, the library's new web site went live. When I tried to download my book - one I had requested months before - I found that all my requests had been deleted from the library site.

I was extremely disappointed. I immediately (and without much hope) sent an email to the library's tech department. The next day (a Saturday), I received an email informing me that they were aware of the problem and attempting to fix it. I was impressed with the rapid response.

The following Monday, I was sent another email explaining what had happened and that the problem had been fixed and informing me that I would be put to the top of the list for this book.

I was thrilled.

2. Last week end, my family ordered takeout from the Foolish Chicken. We have eaten there many times. Every experience has been extremely positive. This time, however, there was a mistake with our order.

We had ordered a ceasar salad with our family meal. When T. went to pick it up, he was asked if ours was the order with the ceasar salad and had confirmed. When we opened the boxes at home, though, we had a green salad.

I was tempted to let it go (the salad looked just fine to me) but S. had really wanted a ceasar salad, so I called the restaurant. My call was immediately transferred to the owner. He apologized profusely, explained what had happened (an order that was virtually identical - but for the salads - had gone out at the same time) and said that if T. were willing to come back and get the right salad, he would throw in some free dessert.

We were thrilled.

3. As I wrote in yesterday's post, I have asked for and received permission to cancel my chemo and herceptin treatments for April. However, when I arrived at the cancer centre last week, I discovered that my treatment for March had inadvertently been cancelled as well.

I went ahead with my bloodwork while staff attempted to figure out what had happened. Each person with whom I spoke (the staff on reception and the nurse who was trying to contact my doctor) made me feel as though they were working hard to get things sorted. A short while later, the woman who does the chemo bookings (someone I know to be extremely competent and accommodating) came to find me in the waiting room. She admitted, in front of a room full of people, that the mistake had been hers and that she had corrected it.

I was both relieved and impressed.

4. When I had my treatment that afternoon, the nurse administered the vinorelbine (the chemo drug, known in the US as Navelbine) right after the Demerol and Gravol (US readers know this as Dramamine). I promptly fell asleep. I woke up more than an hour later, thinking it would soon be time to go home.

Then the nurse came to hang my Herceptin, which takes ninety minutes.

Since the vino only takes ten minutes, I wanted to know what had been happening while I was sleeping. The nurse (not the same one who'd set up the vino) just shrugged and looked at me like she didn't understand the question.

I was too stoned and tired to push matters but I'm pretty sure that they'd just forgotten about me for a while. No one tried to explain or apologize and I was inordinately annoyed.

Mistakes happen. How we deal with our mistakes is what matters.