chemotherapy (part 3 - the grim aftermath)

Two down, four to go.

Feeling a little "off" after this morning's chemo but OK.

Anxious, though, because last time I was fine for the first 24 hours and then...became very sick.

I spent the week end curled up in the fetal position, in agony, unable to deal with sound, light, movement (I read an interview with Melissa Ethridge yesterday, in which she described living through the exact same experience after chemo. I'm in good company). On the Saturday afternoon, I had the home care nurse come and give me an injection of an anti-nauseant which helped me keep the oral medicine down.

As for eating, once I could keep food down, chicken soup and soda crackers were the only item on my menu. That's tonight's dinner.

Once the nausea subsided (the following Tuesday), I started to experience the bone pain associated with the injection I get to keep my blood cells up (at $3,000 dollars an injection, which I'll get each round of chemo), an unbelievable case of the jitters and restlessness (like I'd had three pots of coffee injected directly into my bloodstream) and a weird twitch in my hands (couldn't knit or type). Turns out that was a side-effect of the anti-nauseant.

We've tinkered with my drug regimen slightly this round and I'm going to acupuncture tomorrow. Hopefully that will help. This is all so surreal. I still can't quite believe I'm this person with cancer and seven different prescriptions to take at bedtime.

On the other hand, when the fog lifts and the nausea subsides I feel joyous (I have a friend who is going through this at the same time I am and she describes this feeling as euphoria). I feel so damn grateful not to be sick that everything seems wonderful. I have grabbed onto those days and carry them with me because I know they'll come again.

I've been listening to a lot of music lately. The album of choice today is Casino by Blue Rodeo, in particular the tracks "Till I am Myself Again," and "What am I Doing Here?"

Not very subtle, I know.

chemotherapy (part 2)

This is what it was like to get chemotherapy:

1. The Vampires
They're actually three attractive nurses but the women who work in pharmacology were introduced to me as the vampires, and as such I will always think of them. This is where I had blood drawn and ended up performing a duet of Patricia the Stripper (Chris DeBurgh, circa my misspent youth), to which, I was astonished to realize, I remember all the words.

2.The Chemo Room
This is a large room with a nursing station at the centre. At a guess, there are at least thirty of us receiving chemo along the room's perimeter, at any given time.

Before, we begin the infusion, an oncology nurse goes over my extremely complicated post-chemo drug regimen. I have seven different prescriptions to be taken at varying intervals over the next several days.

3.Red Devil
The first chemo drug is nicknamed this way by the oncology nurses because it's bright red, it burns, it's the one that guarantees hair loss and - you excrete bright red after it's infused. The red devil takes 15 minutes to do its work.

4.Icy Fingers
After an hour's break, during which I receive saline, it's time for the Taxotere, famous for the fact that it can make your fingernails turn black and fall out. In an attempt to prevent this, patients are encouraged to spend the hour and fifteen minutes of treatment with their gloved hands in ice (I am reminded of my college Economics prof, "A statistician is someone who has his head in the oven and his feet in a bucket of ice and says, on average, he's comfortable.")

5. The Closer
The last drug is a walk in the park, because I can move my arm, and, thus, read. It takes about half an hour and then, after my "vitals" are taken, I am free to wobble off home. All told, I have been at the hospital for nearly 6 hours.

My spouse has observed how surreal it is that an experience can be simultaneously so intense, yet so unbelievably boring. Thank god we brought music. Greg Brown, Jesse Winchester, Johnny Cash and the incredible Melissa Ethridge got me through it, along with the aforementioned very patient spouse.

chemotherapy

Today I learned that if I throw up on my clothes in the first forty-eight hours after receiving chemotherapy, I am to put them in a plastic bag and bring them to the cancer centre, where they will burn them.

I am not making that up.

Chemotherapy is very scary stuff.

On March 9 and every third Thursday thereafter, I will spend at least three hours in the chemotherapy room, being infused with a toxic cocktail. Then, after a break of a couple of weeks, I will be radiated every Monday to Friday for five weeks.

Being a cancer patient is a full-time job.

I had a fitness test done at the gym at the cancer centre yesterday (every cancer patient gets a free life-time membership). I am in excellent shape, despite my post-surgery inactivity. This made me feel very good.

a boy in the bath

My son D. lives in the moment. I am trying to learn from him.

D. is 2, or, as he says, "at my next birthday I be three." Tonight he had a bath. This is a small victory in our house. For months now, mere mention of bathing has been enough to make him run screaming from the room.

Tonight, he willingly climbed into the bath, washed himself, played with his toys, his fears forgotten. I had to pull the plug to get him out and even then he didn't notice until the tub was empty, inquiring "Where did the water go?"

After we put his Spiderman pajamas on ("Grammy gave these to me") and brushed his teeth with his SpongeBob toothbrush (the influences of an older brother), he climbed into my lap for a story (poetry, actually, Garbage Delight by Dennis Lee).

I watched his face as he took in the pictures, completely absorbed. He belly-laughed at some of the silly-sounding words. And then he climbed into bed to read to himself.

D. can focus completely on whatever is right in front of him, whether pleasure or irritant.

My older son, S., is a dreamer and a worrier (at 7, he's a child who would lie awake worrying about cancer before he knew his mother had it). He finds it very hard to be in the moment, anticipating the next activity so much that the present goes by unnoticed. I am like that too.

Sometimes it has served me well, helping me to plan and anticipate problems before they arise.

But both S. and I need to learn how to enjoy what is happening right now and not lose sight of that in anticipation of the future.

My children are growing up so quickly. Every age is interesting, challenging and fun. They are so different from each other but both such beautiful, engaging and interesting kids. I need to stop rushing ahead in time so I can enjoy them more, savour each moment with them.

Especially now.

I have my first appointment with the oncologist on Monday, and then an appointment with a radiation oncologist a week after that. This is much sooner than I expected to hear. Good to move ahead but also a little frightening.

I am going to try and enjoy this week end, and every moment, to work very hard at not worrying about what the coming weeks will bring.

moving forward. slowly.

Call it hubris.

One should never post to the internet how easy one's recovery has been from surgery when one does not really know what one is talking about. One definitely should not crow about it.

Within a day or two of my cathartic crying jag, I was on much more solid ground emotionally but finding the fallout from surgery a little harder to handle. There was more pain. A buildup of fluid at the site of the surgery that had to be drained. Twice. Scar tissue has developed under my arm and near my shoulder (my surgeon calls it a "web", looks more like rope, to me) which should go away over time but has greatly impeded mobility in my right arm.

Several people who've had surgery as adults have told me that this kind of back-sliding is normal. I did find it discouraging. Especially as I was trying to work last week, in a context that was particularly stressful (I'll write more on my reasons for this in a future post. Suffice it to say that this was not as insane as it sounds, since I have the best co-workers in the world and that they made sure I took care of myself when I appeared to be forgetting).

I do seem to be on the mend again.

I got my pathologist's report yesterday. My tumour is smaller than I had thought (4cm) and had spread to 4 of the 13 lymph nodes sampled. They also found another kind of cancer (ductal carcinoma in situ) in another part of my breast - but it does look like they got it all (the advantage of mastectomy over lumpectomy). The cancer was graded 3/3, which means that it is very agressive (my surgeon says that is to be expected, given my youth). So...good news and bad news, as they say, but generally speaking, things could be worse. My surgeon stages my cancer at a 2b (with stage 1 being small and with no nodes affected and 4 being cancer that has spread beyond the lymph nodes).

I am now on the waiting list to see an oncologist. Next step - chemotherapy.

I messed with my own head a bit last night by looking up the survival stats for those with my stage of breast cancer. I then re-read a wonderful article by Stephen Jay Gould on cancer statistics, called The Median isn't the Message ( http://cancerguide.org/median_not_msg.html ).

One thing the author writes about is the documented evidence that a positive attitude and belief in one's own survival contribute greatly to battling cancer succesfully.

I should be fine.

the rollercoaster takes a downturn

It was bound to happen. I finally cried last night.

The English language is full of descriptive expressions that I have come to understand viscerally in the last couple of months. Heavy heart. Heartbreaking. Gut-wrenching. Wracked with sobs.

When the dam finally broke, I cried with my whole body, until my chest ached and my throat was raw.

I was crying for how awful this is - being "sick", disfigurement, fear of dying, the prospect of chemotherapy, anger and fear that I can't and won't be there for my children, losing my hair, early menopause, all the horrible side effects of cancer and its treatment, losing myself as a sexual being. And for how it's possible to feel loved and cared for and still be so utterly lonely.

It really was bound to happen at some point. And I guess it was good that it did.

Having cancer is really, really hard.

it wasn't that bad

My father-in-law says that, during his cancer treatment, he had to ask his spouse to stop being so nice to him - he was finding it disconcerting. His wife is a lovely woman and they seem to get along just fine, but I do take his point.

If food equals love, I am very loved indeed. My fridge, freezer and cupboards are bulging with wonderful food (both healthy and decadent). Friends have brought me flowers, books and a host of wonderful presents. I have been overwhelmed by this outpouring of support.
And I'm enjoying every minute of it.

I wonder if it will all stop once I tell how this business of having a mastectomy is not that bad after all.

The hardest part was saying goodbye to my spouse in the waiting room. Or rather several goodbyes. Before the nurse made him leave.

From then on, I was very well taken care of by everyone at the hospital - doctors, nurses, orderlies, volunteers. The hospital staff did everything they could to keep me warm and comfortable (heated blankets!). The surgeon came to see me to answer any final questions. He told me that he knew it was going to go well.

The last thing I remember after walking into the OR and climbing up on the table is a brief moment of panic (a nurse was arranging some very scary looking surgical instruments) before the anesthetist started asking about my kids and I relaxed and drifted off.

I woke up in the recovery room. I was thirsty. And hungry. And in pain. Water, crackers and Demerol were administered in short order and I lay there for some hours, oblivious to the passage of time.

My surgeon came in to check on me at some point and delivered the news that the tumour in my breast had not affixed itself to my chest wall (good news in terms of cancer treatment and recovery from surgery, as it meant that Dr. M. did not need to cut into my chest muscles).

By 3:15, eight hours after arriving at the hospital, I was on my way home.

I never thought I'd say this, but I now understand why mastectomies are done as day surgery. I was in my own bed, able to see my kids. I felt safe and, well, 'at home'. I'm sure this contributed to my recovery.

A home care nurse came the night of my surgery (administered another lovely shot of Demerol), the next day and one last time yesterday to change my bandage. Since the first day, I have managed with Tylenol 2s for pain (and I'm no hero when it comes to pain management).

And here's the most surprising part. It doesn't even look that bad. One incision. A neat row of staples that will be removed in a week's time. That's the upside of imagining the worst. When I screwed up the courage to take a peek after surgery, I fully expected to see a bloody stump where my breast used to be. Instead, there was just a single narrow bandage that ran the breadth of my chest. And it's healing well.

Today I even went out for lunch. With a baggy jacket on. No prosthethis until the healing is a little further along.

Right now, the worst I have to contend with is swelling in the area where the lymph nodes were removed and in my upper arm. It can still be painful but even that is getting better with time, elevation and exercise.

My surgeon should call in the next day or two with my pathology report (grade, stage, and the results of tests for hormone receptivity). I assume that I will be meeting an oncologist shortly after that and in a few weeks time, chemotherapy will start. I've already lined up a friend who spent many years bald by choice, to shave my head before chemo does its worst.

When I admitted to struggling with letting people do all these things for me, a friend said, "We are grateful to you. When something like this happens, people feel powerless. Helping makes us feel less powerless." That helped a lot. People are doing for me and for themselves. That makes it easier to accept.

I really believe that if I am doing well, it's because of all the caregivers in my life, at the hospital, at home and in my community. There are moments when this all seems too awful for words. My arm hurts. I'm exhausted. And scared. But it helps immeasurably to know that I am not going through this alone.

This is why I am also grateful to the friend who opened a phone conversation with, "Are you listing to one side?" Her girlfriend was appalled but I couldn't stop laughing. That was a gift, too.

Groundhog Day

Tomorrow is Groundhog Day. Thursday. The day of my surgery.

I'm a little freaked out.

But, I suppose, I'm as ready as I'll ever be.

I have been completely overwhelmed by the love and support people have shown to me since my diagnosis. It has helped more than I have been able to express. If it weren't for my family and my friends (and the compassion of a few complete strangers) I would not be able to face what lies ahead.

I really wish I didn't have cancer (and I still can't quite believe that I do) but it has served to remind me how fortunate I am.

When I've recovered enough to type again, I'll write a little more about what I've been feeling and some big thoughts I've been thinking.

Right now, I need to have one last glass of wine and go turn my room into a proper nest.

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.