writing your way through breast cancer

It's been two days since chemo, so I feel lousy and have the attention span of a gnat.

It works out well for me, therefore, that I have something I've been meaning to share with you all for a while now.

I really like the Philadelphia based organization Living Beyond Breast Cancer. I've been fortunate enough to attend two of their own conferences (one called "News You Can Use" and one specifically for women living with metastasis) and the Annual Conference For Young Women Affected By Breast Cancer, which they co-sponsor (last year's was in Dallas and I'm applying for a grant, in the hopes of being able to attend in Atlanta this year. It will be the 10 year anniversary of the conference).

A little while ago, LBBC contacted me to see if I would be willing to be interviewed for their Winter 2009/2010 newsletter about "writing your way through breast cancer." I didn't hesitate, as this is a subject about which I am passionate.

You can read the interview on their web site. I am also please to not that they have listed "Not Done Yet" under the heading "Creative Coping: 10 Publications To Motivate You."

my husband's chest

You don't need to tell me how lucky I am.

I have a roof over my head, great medical care and I'm surrounded by people who love me.

And don't think I forget how very lucky I am to be alive at all. Why did I get to go into remission? Why me? I am indeed very fortunate.

But there are times when I do feel sad that I will never put this cancer behind me. I feel the toll ongoing treatment takes on my body and my emotional well being.

So last night I stood in my kitchen, with my head on my husband's chest (we say we were built for each other. My head lands flat on his chest and tucks under his chin). He put his arms around me and we just stood there, breathing together.

He didn't need to say anything. He understood my frustration. Only a few hours before I was finallly feeling sharp and healthy and energized. And then, after chemo, I stood in his arms, feeling sick and more than a little shaky.

He didn't remind me how lucky I am.

But I know it.

aware of the irony

Life is funny.

This morning was perfect weather for a bike ride. The sun was out and the temperature climbed to 17C (that's 62.6 in American). It was my first time on the bike in more than a week - since before the plague toppled my family, like a series of dominoes.

It was a fun ride, and I didn't even mind the big hill I have to climb on my way to the hospital. I arrived twenty minutes after I set out, a little sweaty and with my heart pumping. As I locked up and headed into the cancer centre, I noted with pleasure that I hadn't been coughing.

"It feels good to be healthy."

I very nearly said it out loud.

I was suddenly struck by the absurdity of my situation. Here I was, going to get my bloodwork done the day before chemo and thinking about how healthy I am.

Three years ago, at almost exactly this time of year, I learned that my cancer had become metastatic. I don't think I could have imagined this day, when I'd be riding my bike up Smythe Rd. and thinking about how healthy I am.

So, as I was saying at the beginning of this post - life really is pretty funny.

Cross-posted to Mothers With Cancer.

chemo brain or just getting older?

A few days ago, a massive filling popped out when I was brushing my teeth.

I made an appointment with my dentist to go in today. It hurts, so I've been very much looking forward to this appointment, mentioning it a lot and looking forward to being able to chew again.

I was shocked this morning when my dentist's office called, and his assistant said, "You're supposed to be here. Do you remember your filling?"

I hadn't forgotten my appointment or the filling (did I mention it hurts?) but I had been convinced it was at 2pm this afternoon, not 9:20 this morning.

As it turns out, they did have an opening at 2pm, so I will get my tooth fixed this afternoon, after all. As she was hanging up, the assitant said, "It was just a misunderstanding." I responded with "No, I'm an idiot."

Please tell me that this kind of thing happens to you, even if you've never had chemo.

making the best of it

I think I've coped with chemo week much better this time around (thanks in part to some good advice from a friend).

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

random. out of necessity

It's Day 3 After Chemo and my brain is jumping around like a puppy with a burr up her butt. I can't focus on anything for more than a few seconds so here is a little bit of randomness:

One:

It appears that my family and I will be among the first in line for the H1N1 vaccine. My kids will be so thrilled.

Two:

My friend Jeanne, the Assertive Cancer Patient, posted about a reader in Texas who has $187,000 worth of Neupogen that she can't use:

"Texas doesn't have a drug repository that would take this medicine and pass it on to someone who needs it, and she hates to see it go to waste, as do I.

Any ideas, readers?

Obviously, we can't break the law and put this stuff on eBay or Craigslist, so I am looking for legal ways to get these expensive drugs to someone who can use them."

Three:

Yesterday, I got a phone call from the CT booking unit at my local hospital. I was informed that my oncologist had ordered a scan of my abdomen and chest, to be administered within the next couple of weeks.

I had a CT scan on September 4. When I mentioned this to the person who was booking the appointment, she had me call the nurse who works with my oncologist to confirm that they really want me to have another one. The nurse called back today and said that I didn't need to do the abdomen but since it's been a while since they have done the chest, we should go ahead with that.

I called the booking person back and the appointment has been scheduled for this Sunday afternoon at 1:20 (I had to cancel plans). My questions: Why didn't we they just order my chest scan for the same time as my las CT? Or my next one? I have no reason to believe that my doc suspects that there is anything wrong and I bet that if I could talk to him directly he would say that the chest scan can wait until we next do the abdomen. Why should I be subjected to extra radiation, an extra trip to the hospital and an extra session of find-the-vein when we have no reason to believe that there is anything wrong (and while I continue to undergo chemotherapy)?

But it's just not worth fighting about. Sigh.

Four:

Finally, I have another finished object to show. It's a Clapotis. I totally wish this one were for me but it has been promised to someone else. I will definitely add another one to the knitting queue. I made it from Knit Picks yarn (the Gloss Sock Yarn, merino wool and silk). It's lovely stuff (especially after washing) and relatively inexpensive. It also came quickly. I'll definitely order from them again.

These photos don't really do it justice but my son was a very, very good sport about posing for them.

frequent flyer

I had chemo on Tuesday. It was kind of a long day (I started with bloodwork at 8:30 and left the hospital at 3:30) which passed quickly due to the company of a really good friend. We had so much to say to each other that we needed the whole day to cover everything (except for when I was sleeping. The demerol/gravol combo really does knock me out).

It would have been an even longer day if I hadn't been on the receiving end of a little preferential treatment. At one point, the nurse who coordinates the chemo floor came out to reception and wrote on the notice board that they were running an hour behind schedule. I happened to be standing nearby and she caught my eye and said to me, in French, "environ" (approximately).

I was surprised, then, when my name was called a few minutes later. I passed the same nurse again, on the way in, and said, "That wasn't an hour."

"We squeezed you onto another team," she replied.

My friend, C. said, "Are you queue jumping?"

I smiled back. "It's the life-time membership."

43 things (part three)

22. One day, when I was small, my aunt bought me a Buster Bar. Before I could eat it, it fell off the stick. She didn't buy me another one.

23 I had Dilly Bars instead of cake on my birthday this year. I ate two.

24. I also had a beer during the day on my birthday, something I consider very decadent. I usually only do this with my friends L. and K. (otherwise known as Sassymonkey).

25. The day after a social gathering, I spend a lot of time second guessing my behaviour, even when especially when I had a good time.

26. I feel guilty about something several times a day. Only recently did I discover that this is not a universal experience. I'm curious what it's like not to feel guilty.

27. My life in treatment is a constant tension between search for structure and then rebellion against self-imposed structures.

28. I have voted NDP in every provincial and federal election since I was old enough to vote (although I have sometimes done so while holding my nose).

29. This was the first year since 2007 that I didn't go to BlogHer. I'm OK with missing it (I had three great years there. The first was an amazing birthday present, the second I was a speaker and last year, I got to bring my book) but I'm a bit sad, especially since I finally feel like I figured out how to really enjoy the experience. There are lots of folks I would have liked to see (Average Jane and Nonlinear Girl were on a panel together. Whymommy was on a panel about blogs as an agent for change) and there are so many folks with whom I would like to spend more time.

30. When I was a teenager, I had a huge crush on the Cassidy brothers. I especially loved Shaun.

31. I was a hideously self-absorbed and narcissistic thirteen year old. It's amazing that my mother let me live.

living large

Chemo typically turns me into a horned, fanged, clawed she-devil for at least one day following treatment. Today is that day.

My head knows the mood will pass but boy am I pissy.

But I'm trying to re-commit to having something vaguely resembling content on this blog, so I thought I'd share a couple of shots taken in a parking lot outside a Sonny's restaurant in South Florida (we'd had lunch that day at my first ever Waffle House. We were on a greasy streak).



We had just come back from a day at Corkscrew Swamp and filled up on ribs and other good fried things and I think I was a little giddy.

Anyway, this car just called to me and I made the boys take photos.

watch me wave my hands around a lot

As promised, here is a direct link to the Connected segment on cancer blogging:

http://www.cbc.ca/video/#/News/TV_Shows/Connect_with_Mark_Kelley/ID=1549366307

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.

book review: Getting Past the Fear. A Guide to Help You Mentally Prepare for Chemotherapy

Nancy Stordahl is an outspoken breast cancer advocate. She's been through treatment herself and lived through her mother's illness and death from metastatic disease. She started her blog, Nancy's Point, when she was still in treatment and continues to write there today. Nancy is generous with her experience and supportive of others living through breast cancer. Who better, then, to write a guide to conquering the fear of chemotherapy?

Not just another advice manual, Getting Past the Fear: A Guide to Help you Mentally Prepare for Chemotherapy is full of advice and personal observations. It's not a long book, only 60 pages, but to my mind that's a serious advantage. I couldn't concentrate on very much at all when I was first facing treatment. I was given many books that ended up being helpful and interesting but I couldn't read any of them during the weeks leading up to chemotherapy. Nancy understands this and wastes no time getting right to the point (get it? Just like her blog?)

Getting Past the Fear is full of practical tips, many of which I have never read anywhere else. For example, if I had known that you can get a head cap to fit under your wig "to help keep cooler and minimize itching", I might have actually tried to wear one! And it would have been very helpful to know before my first treatment that it's perfectly OK to unplug the IV (from the wall, not your arm!) and wheel everything to the bathroom. Treatment involves a lot of liquid. No one needs a bladder infection added to their list of chemo side effects.

Nancy is very clear that her experience is just that, and that yours might differ and so might your choices. I do think though that most cancer patients will benefit from considering her advice -  to keep a journal, ask for help when you need it, do your research and bring your list of questions to appointments with your oncologist.

Nancy also suggests planning a getaway, to give yourself a break before, during and/or after treatment. In a passage that I especially loved, she writes of her trip to the North Shore of Lake Superior with her husband:

"During that time away, we spent precious moments sitting on our private balcony marveling at the vastness and beauty of the ever-changing water, reveling in leisurely meals...and enjoying each others' company...One afternoon, there was even a brief, lovely wedding ceremony that took place directly below our balcony. The bride and groom and all their guests never once looked up, so they never realized they had two more unannounced wedding guests. Observing an intimate occasion...was a nice reminder of the fact that life was carrying on."

If reading all of Getting Past the Fear seems too daunting right now, you can dip in and out. Read the chapter headings and the conclusions in bold that Nancy has inserted at the end of each chapter. Check out the list of questions for your oncologist. Read the parts that speak to you, then stick the book in your purse for when you next need Nancy's advice. She's even left you a few pages at the end to add your own questions and observations. And if digital media is more your thing, download the ebook for your tablet, phone or ereader.

Nancy ends her book with the following quote: "What lies before us and what lies behind us are tiny matters compared to what lies within us." (author unknown) 

That sums up the book's message rather nicely: You will get through this. You are not alone.

For more information on how to buy Getting Past the Fear: A Guide to Help You Mentally Prepare for Chemotherapy is its various formats, visit Nancy's Point. The blog is also a great resource for anyone facing breast cancer at any stage.

Nancy's offered two copies of her book, one ebook and one physical copy. Let me know in the comments, if you would like either. If more than one person is interested, I'll choose recipients at random.

The author, with some friends.

Update: Would Jo Bucktin and Alene contact me, please? I need to get the info to send you you book!

the brain of a monkey

First:

My spouse and I had the following conversation this morning:

T.: "I had a really hard time falling asleep last night."

Me: "Did you have monkey brain?"

T: "What? Like I couldn't stop thinking about bananas?"

Second:

I woke up feeling kind of bummed out this morning. After coffee, my mood changed dramatically. I actually tweeted, "I think I love coffee the most."

Third:

Speaking of Twitter, a bunch of folks have changed their time zone to Tehran, in order to confuse Iranian censors. I've done it, too, although I am not sure if this really works. And I love the fact Twitter and Facebook are playing a role in helping activists all over the world get the word out. Makes me feel virtuous and less like I am just wasting time (although, I know it's a stretch to describe playing a Scrabble knock-off and commenting on my friends' status updates as activism).

Fourth:

Just over one week of school left. Double-edged sword, that. S. has had a fantastic teacher this year. Can't say the same of D. His teacher was complaining that he does his own thing too much, like reading a book by himself during story time. Um, perhaps this is because he is READING NOVELS while she is teaching the kids what sound the letter 'a' makes. Sigh.

Next year, he is switching schools and entering the "gifted" program (this term is a "don't get me started." Both my kids have tested as "profoundly gifted." My friend M. says we should just call these kids "idiosyncratic learners." Another terrific teacher once said, "It's just another kind of spec. ed." These kids have their own set of learning challenges and my older son is thriving in the program). It will be great to have the kids in the same school.

Fifth:

My older son has been asking for guitar lessons for a shamefully long time (shameful because music is an area of my kids' education that we have sorely neglected). I just signed him up for Rock School. If he enjoys the week, we will sign him up for lessons.

Sixth:

I have never set foot in an Abercrombie and Fitch. The fact that this beautiful young woman was relegated to the stockroom because she has a prosthetic arm has ensured that I never will.

Seventh:

My Xmas tree is still in my back yard. I think that's kind of sad.

Eighth:

I am seeing my oncologist in person for the first time in months, this afternoon. I plan to give him a copy of my book and remind him that we discussed taking a break this summer. I plan to skip treatment in July (so I can go to BlogHer). I also want to ask him if I can take August off as well. If he has any hesitation about this at all, though. I won't push.

I promised.

Ninth:

Posting gratuitous photos of my son being goofy (future blackmail fodder for sure). Noticed that I look even goofier in that hat but decided that censorship on that basis would be hypocritical. Thanks to my bro-in-law for capturing the moment with his cell phone.

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.

i have excuses (no, the dog didn't eat my blog posts)

I'm back.

I didn't intend to keep Will and Billy and the boys at the top of the page for so long. I keep meaning to post but I never seem to get around to it. I wanted to assure those who have expressed concern that all is well.

It's time to re-commit to regular updates and to begin, please let me explain my absence:

The last round of chemo was kind of hard. I'm not sure if I was hit with an additional bug but I experienced some really gruesome side effects (I'll let you use your imagination), especially last Friday, when I should have started to feel better.

The truth is, that I am taking longer to recover every round, these days. My oncologist has suggested that I skip a treatment this summer. I plan on taking July off so I can go to BlogHer (Did I mention that I got in? I was so disappointed when I came back from Florida to find that the conference had sold out. I can't really afford this but when I learned that there was a space for me, I hesitated for only a couple of hours before taking out the credit card. After all, my book will be there, I want to be there with it!)

I'm going to ask my doc if I can take August off, as well. It can't hurt to ask, right?

When I have felt well, I have been running around a fair bit. I have had a bunch of appointments (among other things, I have returned to physio and lymphatic massage, after taking a long break), errands and other commitments.

Last week end, for example, my spouse and I took D. to the Cumberland Heritage and Power Festival. There were so many cool things there, a steam powered rock crusher, water-powered toys and little tiny steam trains on which you could ride. I wish I had brought my camera. The photos would have made a great blog post.

I blame Twitter. I find sometimes that I have begun to compose my thoughts in 140 characters. For example, I tweeted about my brain MRI results but I see that I didn't write about them here (I think this is a common problem. I remember Average Jane citing Twitter as an excuse for not blogging). They were great results, by the way with absolutely nothing suspicious in evidence, or as I reported to my spouse, "There is nothing there."

I have had BSG to watch knitting to do.

Promoting my book, while fun, has left me kind of uninspired. But I am getting past that. How many more times can I say, "Please buy my book?" or "Don't forget about the Toronto launch on June 11?"

The truth is I haven't been doing much writing of any kind lately. And I miss it. I just seem to have fallen out of the habit.

But the only way to make something a habit is to do it.

So here I am.

maybe it's the demerol

Or post-chemo brain rot.

But I loved this: