being (a) patient

There is nothing like sitting in a cold waiting room, wearing an unflattering robe and your winter boots to test both your patience and your dignity.

The latter part of the week that just ended was filled a gruelling round of pre-operative appointments:


Wednesday, January 25
Location: the hospital where my surgery will take place

admitting
I am issued with a green plastic card with my name, address, etc.

the pre-op nurse
A nurse fills me in on the details of my upcoming surgery, what I need to do to prepare and how to follow up. She is very calm and thorough and I remember almost nothing that she said to me. I am grateful for the written material they give me and for my friend, taking notes.

the physiotherapist
I am provided with exercises to regain flexibility and strength in my right arm after surgery (and to ward off lymphedema, painful swelling in the arm that can occur as result of the removal of the lymph nodes). I am expected to start these exercises the day after surgery and to progress gradually until I have recovered fully. I find this appointment very reassuring.

the home care nurse
I remember two things from my meeting with the coordinator of the home care program:

1-A nurse will visit me after the surgery and at least one other time after that.

2-The reply to one of my questions: "Oh you should talk to the pre-op nurse. She handles all of Dr. M's breasts." I refrain from pointing out that I still think of them as my breasts, despite the fact that Dr. M. will be removing one of them.

Thursday, January 26
Location: different hospital, nuclear medicine

the bone scan
I had been told to arrive at 8:15 in the morning, when I would be given a drink to prepare for my bone scan later that morning. Instead, I am injected with "a small amount of radioactive material" and told to return in 2 hours.

Why are hospital robes always too small, no matter what size you are? After cooling my heels for a while, I am ready to be scanned. This process involves lying on my back while a camera passes slowly over me. The five minutes spent with the camera directly on top of my face (not touching but really, really close) are a bit weird but, otherwise, the process is painless.

My oldest son is really impressed with the idea that I have been injected with radioactive material. However, a series of experiments proves that, unlike Spiderman, the experience has not given me superpowers. I don't mind. Those superheroes lead pretty lonely lives.

My friend and I notice a sign in the waiting room, "Please notify us if you are preparing to travel by air in the near future and we will provide you with appropriate documentation." Apparently the stuff with which I have been injected can set off airport security alarms. Scary stuff.

Friday, January 27
Location: a publicly funded private clinic

the abdominal ultrasound
The attire to du jour is a white paper poncho, open at the sides and tied with a blue ribbon. It looks particularly fetching paired with my black Blundstones.

The technician is motherly (actually uses the phrase, "atta girl!"), and like all the others, is very nice. She has me breathe in and hold the breath more times than I can count. I forget to breathe out at one point, as it suddenly occurs to me that although these tests are routine, they are meant to determine if the cancer has spread beyond my lymph nodes and into my bones or internal organs.

the chest x-ray
A run of the mill x-ray, with front and side views. The is the first technician to mention the fact that I have breast cancer.

the heart scan (aborted)
I was told by the woman at the cancer centre who had booked my appointments that this last step would be further blood tests. I am, therefore, a little surprised to be taken through a door with a now familiar graphic and the words "nuclear medicine."

After being seated in a tiny room, identical to the one I'd been in prior to my bone scan, I have the following conversation:

technician: "Are you ready for this?"

me: "I don't know what this is."

technician: "We need to scan your heart to make sure that it's strong enough to withstand chemotherapy."

me: "Is it really safe to be injected with radioactive material two days in a row? Because I just had a bone scan done yesterday."

technician: silence.

She then goes off to check with "the doctor" and, after a short wait, I find myself once again under a camera. The "doctor" (to whom I am never introduced) comes in, and after a brief, muttered conversation, I am informed that my ribs and sternum are still "glowing." A heart scan will be impossible.

This may seem like no big deal but I had really been counting on having three whole days with no appointments prior to my surgery. Now half of Monday will be lost to more waiting rooms and another test.

I am told that it would have been OK for my heart to still be radioactive when my bones were scanned. If the two days had been reversed, I could have fasted before the ultrasound, had my heart scanned and then done the bone scan the next day. While this setback is minor, it is another example of how patients are right to ask questions when something that is communicated to us does not make sense. Even with the most skilled, compassionate staff involved in patient care, these breakdowns in communication seem to happen with a fair amount of frequency.

I had a two hour massage today. It turned me into mush for the rest of the day but did take the edge off my anxiety. I'm fortunate to have this kind of resource at my disposal, as well as family and friends who have overwhelmed me with their kindness and understanding.

I'm also glad that I continue to see the humour in all of this.

getting to the root of the problem

Modified radical mastectomy.

I couldn't say these words for three days without my voice breaking. It's taken me more than a week to be ready to write about it.

My surgeon is very compassionate, yet blunt. After examining me, he told me that my tumour is too "bulky" to do a lumpectomy. His exact words were, "It would look like hell."

He also asked me how I would feel if he told me he was going to take out "some of the cancer."

Not that I was arguing. I was shocked and silent, my brain trying to catch up with all the information that was being thrown at me.

The surgeon did offer me "neoadjuvant chemotherapy" - chemotherapy given before surgery in an attempt to shrink the tumour so that a lumpectomy (or "breast conserving surgery") can be performed. He said that studies in the US show this process to be succesful 65 per cent of the time. In his personal experience, results have not been so good and women have often still needed to have the mastectomy.

The surgeon said I could take some time to think about it if I wanted but I could tell which way he was leaning (and while he does seem to have a bit of a god-complex, he is also very confident and has an excellent reputation). And I don't think I can face two full rounds of chemotherapy (before and after surgery). So I signed the release form. And then I went home and fell into a deep funk.

I have always had an ambivalent relationship with my breasts. They have been a source of pride and shame (I am both a product of Western culture and my Catholic upbringing). They have fed two children for a total of 40 months. When I weaned my boys, I felt both sadness and relief. Only recently have I come to feel comfortable in my own skin, to like what I see in the mirror, this familiar body.

And now it will change, dramatically and permanently.

Modified. Radical. Mastectomy.

I'm assuming that those who read this will know what a mastectomy is.

The modified part means the surgeon will also do an axillary dissection (the removal of my lymph nodes).

And radical means 'root', as in getting to the root of the problem (hey I learned something in university!). And this is what the surgeon and I are chosing to do.

I have come to terms with my decision. It is the right choice for me. At least I feel that way most of the time.

Before he wrote my name in his calendar beside February 2nd ("Groundhog Day!", I exclaimed. I then had to explain that I wasn't objecting to surgery on Groundhog Day...), my surgeon said, "I will cure you."

I went for a run with my dog in the snow today. It was hard work but breathtakingly beautiful. And the joy of a dog in the fresh snow is contagious.

I am writing this while sitting by my small son's bed. He is pretending to be asleep.

Right now, at this moment, it feels easy to be hopeful.

my timeline: from lump to diagnosis with one noteworthy detour.

December 2: the lump
While getting undressed at night, I find a lump in my right breast. It's feels about the size of a walnut.

December 3: the referral
A very nice Dr. (who looks about the same age as Doogie Howser was in that series) is concerned enough to refer me for a mammogram.

December 8: the mammogram (and ultrasound)
After calling around, I am able to schedule a mammogram in less than a week. The mammogram itself (which involves having your breast mushed between glass plates) is no big deal. Uncomfortable but not painful. I had been told to expect my results within a week but the technician comes back from developing my films looking very serious. She decided to show my films to the radiologist on call, who has referred me for an immediate ultrasound. Everyone I deal with from that point on looks very grim to me.

After the ultrasound, I am herded into a consultation room for an impromptu meeting with the radiologist. I don't remember much from this conversation except "It doesn't look good," and "hope and pray for the best but prepare for the worst." I also remember the word "urgent" being used several times. I later learned that this radiologist also called my GP to reinforce the "urgency" of my situation.

I do what any sensible person would do and spend the rest of the day drinking with friends.

December 20: the detour
I'm on my way out the door when my doctor calls. She sounds furious. Instead of being forwarded to the cancer centre, my mammogram films are in the film library at the hospital. My "urgent" films have been put into storage. I drop everything, go pick up my films and deliver them to the cancer clinic.

I receive a call the next day to set my biopsy appointment for early in the new year.

December 30: the second lump
I find a lump under my arm, about the size of a large raisin, or a small grape. This is new. It was definitely not there when my GP examined me on December 14.

January 3: the biopsy
I have an ultrasound guided biopsy of both lumps. Once I am injected full of Novocaine, I feel nothing. I will be a little sore for the next couple of days but all in all, I am more traumatized by the sound the larger needle makes as it takes the sample from my breast (a loud sort of "kachung!") than by physical discomfort. Also, I'm not really sure why, but I can't raise my arm above my waist for the next 24 hours.

January 5: the diagnosis
My GP calls me at work with the news I have been expecting but still hoped not to hear. I have cancer. Technically speaking I have "infiltrating ductal carcinoma in my breast and metastatic adenocarcinoma in my axilla that is consistent with the carcinoma in the breast" (Translation: Garden variety breast cancer located in a milk duct. This same cancer has spread to my lymph nodes).

January 13: the surgeon.
My experience with the surgeon deserves an entire post of its own. The good news is that my physical exam reveals no lumps above the collarbone (this is a huge relief). The not so good news is that my tumour appears to have grown to about 5cm (the size of a plum, to continue using fruit as comparators).

My surgery will take place February 2nd.

Three observations:

1-I must act as my own advocate. I'm not sure that the snafu with my mammogram films would have been discovered so quickly if I hadn't been pestering my GP and the cancer clinic with daily phone calls. As a cancer survivor put it to me, "People may be concerned and mean well but it's your life that's at stake."

2-Our public health care system does work reasonably quickly and well. And the competent, caring health care practitioners have, in my experience so far, been the rule, not the exception.
Watch this space to see if I still feel this way in a few months' time.

3-One should always bring a small army of supporters (or at least one very good friend) to every appointment.

what (not) to say

It's not easy to know how to respond when someone tells you they have breast cancer, but for goodness' sake, say something. As hard as it, is, and as awkward as you might feel, it is worse to say nothing than to mutter a few heartfelt words.

I'm not sitting in judgment here. I have missed several opportunities in the past to speak up when people I care about have been in difficulty. It feels so hard to find the right words. Trust me, though, if you don't acknowledge the elephant at the table, it just gets bigger.

"I'm sorry" is a perfectly acceptable thing to say. So is "that really sucks."

Some of the most meaningful things people have said to me:

"This is a campaign and we're going to win it."

"If I know anyone strong enought to deal with this, it's you."

"I know your treatment will be succesful. You're a tough customer."

From a breast cancer survivor: "The majority of us will live long enough to die of something else."

Some more do's and don't's:

Do offer to help - if you mean it and you can.

If you want to tell me a story about your friend/cousin/neighbour who had breast cancer, think ahead for a second. How does the story end? Unless your friend is now healthy and cancer free, I don't want to hear it.

Do ask me how I am but don't act dubious if I say that I'm fine. At that particular moment, I might be. Or I might just be trying really hard to keep it together. Either way, let me take the lead on whether or not I want to pour out my heart.

I've also noticed that there seems to be a tendancy, in my social circle anyway, to say it with wine. This meets with my unqualified approval.

A word about God:

Although I'm a committed agnostic, I'm quite happy to hear that you are including me in your prayers. I'll take all the good thoughts I can, in whatever form.

Don't, however, tell me that this is all part of God's plan for me. Because if I believed in God and thought He'd planned this for me, I'd be pretty pissed off at Him right about now.

a whole new world

Well, I've finally found a reason to create my own blog.

I am 38 years old, have two young kids and breast cancer. Since there has never, as far as I know, been anyone with breast cancer in my family, the odds of it happening to me are quite small indeed. Nor do I have very many of the other risk factors. But here I am.

I would rather have won the lottery.

I have, however, decided to deal with this challenge in the way I always do - along with liberal amounts of wine, outings with my dogs and the abundant support of friends and family - by writing about it.

I have certainly found the experience thus far - from lump to diagnosis - to be interesting (at least I have lots to say about it). And I hope this process will help me understand and explain this new world that has opened up to me.