Home Sweet Home

Last Thursday afternoon I realized that my surgical pain was worsening, not improving. "I'm just pushing myself too hard," I thought. After all, it went away when I lied down ... every time. Friday morning I felt pretty good, and headed off to school to help with the Mexican Independence Day celebration. By the end of the three hours I was in pain again, so I went home and took it easy. Saturday morning I awoke to make Bill his birthday breakfast of eggs benedict. By the time we had eaten and the dishes were done, I was in pain yet again. "Call your Dr.," Bill said. "He wanted to be kept informed of any changes."

Yeah, I thought. But it's Saturday ... I don't want to bother him ... And besides, we had a sitter for that night and Bill and I were going on a real date. I didn't want anything to spoil that.

Then the little voice spoke up. "That's ridiculous Page, you're in pain and your doctor should know about it." So, I called him. He was very concerned and called in an antibiotic prescription immediately. He also asked me to take a picture of the incision area and email it to him (how very high tech), so I did. I didn't see anything fishy but it's kind of hard to carefully inspect your own chest, isn't it?

A few minutes later the phone rang and it was him. "It looks like an infection," he said. OK, me thinks. I'm taking antibiotics so that should take care of it. But then he kept talking.

"Page, I'm a pretty conservative guy. Because your skin is previously irradiated and we're trying to get you ready for chemo in a week and half, I'd like to admit you to the hospital for some IV antibiotics. They're much stronger and will get to work much more quickly than oral meds."

"Well that's really going to ruin my weekend," I said, but dilligently took down the details of what I needed to do ... go to the ER ... see the Hospitalist on staff ... etc.

"So this will just be an overnight thing, right?"

"Well no. I'd like you to get several doses of two different antibiotics. I'll come in and see you Monday morning and will likely send you home then."

After I hung up I had my own personal mental breakdown. I was mad ... No, I was pissed. I didn't want to go to the hospital. I didn't want to tell my kids that mommy has to go away for a few days. And I didn't want to not be home for Bill's birthday. So I did what all overwhelmed 40-something superwomen do ... I cried. For about three minutes. Then I pulled myself together, wiped my eyes, and got on with it.

I told Bill first. He was, of course, completely understanding and wonderful. Then I gathered the kids. "Mommy has something to tell you guys, can you come here?"

Wrong thing to say. Rosie gave me a terrified look, said "Not something else bad!" and ran upstairs. Tess didn't run away but was crying ... no bawling ... on the couch. "I just want this to be over. I didn't know cancer would take this long. We were going to bake a cake today!"

Rosie came back, also in tears. I, of course, started crying again too. It wasn't pretty ... at all. Bill wisely distracted the girls with thoughts of heading to the annual YMCA luau and each bringing a friend. That redirected everyone to the telephone to see who was available on short notice.

I headed upstairs and packed a few things ... jammies to avoid the humiliation of the hospital gown ... books, knitting, and my computer, to provide entertainment ... and of course, ear plugs in case my roomate snores (learned that lesson the last time around).

I drove myself to the hospital so we wouldn't have to subject the kids to the unknowns of a Chula Vista ER (which turned out to be a good thing. The 91-year old woman in the bed next to me called out "Mamaaaaaaaaaaaaaaaaaaaaaaaaaaaaa" very loudly about every 90 seconds). All things considered, everything went very smoothly. I hardly had to wait before being given a bed, and within just a couple of hours I was heading upstairs to my room.

Bill and the girls arrived just in time. They headed straight to the room to wait for me to be delivered from the ER. Of course hospital policy required that I be wheeled up in a wheelchair. When Rosie saw me, she burst into tears again. I pulled her to me to give her a hug. "Honey, mommy's just fine," I said. "Really."

"Then why can't you walk?" she wailed. Oh the mind of a young child. Apparently before I arrived she had seen a woman walking through the hall using a walker and rolling her IV along with her. Apparently she made quite an impression on Rosie.

I stood up immediately and reiterated "Look, of course I can walk!" but she was inconsolable. Ultimately Bill took her down to the lobby to wait for Sofia and Tess to have a visit before leaving. She refused to come back and see me again, which I understood, but which also cut deeply ... A situation which I cannot control has made my children scared and sad, and there's nothing I can do about it but move forward and try to help them make sense of it. How do you make a six-year-old understand that?

I was discharged this morning and am happy to report the pain is completely gone and the redness has diminished too. I've got three weeks worth of antibiotics to take and will also be receiving hyperbaric oxygen therapy to aid in the healing. We're pulling out all the stops to assure I'm as healed as possible prior to starting chemo.

Certainly wasn't the way I wanted to spend my weekend, but it was yet another step forward in this journey.

Give me a C-H-E-M-O!

So I knew there was a reason that I never got around to updating my blog with my chemo plans. A week ago I saw the oncologist. The news overall was really good. I'm definitely Stage I, which means it's very early. I'm also estrogen/progesterone receptor positive, which is also a good thing even though I have no idea what it means. The best news: he's giving me only four cycles of chemotherapy (rather than the six I anticipated ... yay!). He then scheduled me to begin my TC regimen (Taxotere and Cytoxan) this coming Thursday, and assured me I would do great, feel great, look great. Then he confirmed I would lose my hair.

Today, I saw my general surgeon (whom I love), and she officially released me. I also saw my plastic surgeon, who said things are progressing very nicely. "So far so good," were his exact words. However, when he heard I was scheduled to begin chemotherapy in two days, his tone changed. "I'm not sure I'm comfortable with that," he said. "Irradiated skin (which I have thanks to my 24-year-old cancer treatment ... I'm sure you've all noticed my glowing personality anyway) heals more slowly than average skin. Plus chemotherapy makes you more susceptible to infection and will cause the wounds to heal even more slowly. I'm going to call your oncologist and see if it's OK to postpone for a couple of weeks."

So he took off my steri-strips, then used dermabond to reinforce the healing incision. "Is that SuperGlue for the skin?" I asked, jokingly?

"Actually, yes. It's the exact same thing but it's been formulated for skin use and obviously sterilized."

Who knew? He then said "I'll be back in a few minutes. You just sit there and let it dry."

OK.

Five minutes later he returned. "I've just talked to Dr. Funnyguy (my oncologist ... name changed to protect the innocent) and he's agreed to postpone your chemo for two weeks."

Whoopee. I was just getting myself all psyched up for it. I already bought a wig - a really cute and sassy one. I've been eating ultra-healthy to shore up my immune system. I've been exercising every day because I should. Two more weeks? They say it takes three weeks to form a habit so maybe these measures will stick. We'll see. Unfortunately that means two more weeks on the back end which means I won't be done by Thanksgiving, but I will be done by Christmas, so there's that.

It also means I can celebrate Bill's birthday (and mine for that matter) and feel good all at the same time. I can also ease back into life ... work ... mom stuff. All that jazz.

All things considered, the news is great. Yeah, I have cancer, but we caught it early and it's of a kind that's got a great success rate. How lucky am I to have had cancer twice in my lifetime, and both times have it be of a form that's one of the "curable" ones (don't tell Dr. Funnyguy I said that ... he'll say "breast cancer is something we don't cure, we manage for the rest of your life.")?

I've thought a lot about my first oncologist lately, comparing him to my present guy and remembering specific moments in time. Like the first time I met him. I was with my mom and dad, and we were ushered into his wood-paneled office. He sat in a big red chair. He didn't say much with me in the room ... (Mom ran blocker for me that time around. Best blocker ever!) What he did say, I remember vividly. "Well, if you have to have cancer, you've got the right kind."

Well I had two bouts of Hodgkin's Disease which makes this my third. Third time's a charm, so this will be it, right?

Cancer is SO Limited

My parents forwarded this to me. It was on a card that they received. Enjoy the truth.

Cancer is So Limited

It cannot cripple love;

it cannot corrode faith;

it cannot shatter hope;

it cannot eat away peace;

it cannot destroy confidence;

it cannot kill friendship;

it cannot shutout memories;

it cannot silence courage;

it cannot invade the soul;

it cannot reduce eternal life;

it cannot lessen the power of the resurrection;

it cannot quench the spirit.

Damn straight.

Remembering

Today is September 11th. President Bush is speaking on the television. I'm explaining to the kids, especially Rosie, what happened that day. It's not an easy thing to explain. "Why did they do that?" "I don't know honey. I don't know."

I remember exactly where I was when the towers fell. I was heading in to work, just getting on the freeway, when Peter Jennings' voice on the radio said "Oh my god, the tower's falling." Not knowing what else to do I continued on my way to work on the 22nd floor of a downtown San Diego high-rise. The second tower fell before I arrived at work. As the day unfolded the details unfolded. Many people didn't come to work at all. Those of us who were there weren't quite sure what to do. None of our clients were calling, nor where they answering the phone. It was a very surreal time.

As the gravity of the news sank in I vividly remember craving comfort. The comfort of my home, my family. Only two of my children were born then .... they were at daycare down the street from our house, but 20 minutes from my office. I was three months pregnant with my third. What if it wasn't over? What if something happened here in San Diego? What if I needed to get to them? Oh my god, I need to get home. Now.

So home I went. Bill was still at work. The house was quiet. The kids were safely oblivious four doors down. I was alone. With my thoughts. With my questions. With my craving for comfort. With a need to be grounded. To process it. To cry. To grieve.

Needing to connect with the earth in an attempt to make sense of it all I turned to the garden. We were in the midst of planting our backyard in our then-year-old home. With bare hands I turned the earth, pulled the weeds, needing to gain some control over an otherwise out-of-control day. I got dirt under my fingernails. On my knees. Smudged my face. With every weed I pulled harder. More quickly. The sun was shining hot and I was sweating. It was what I needed to do.

What is it about times of tragedy that cause us to turn to the most fundamental things? A connection with the earth. With our families. With those we love. In these times all but the most important things fade away. Material things become insignificant. It doesn't matter what kind of house you live in. Which car you drive. Whose shoes you wear.

And what is it about time that reverses this focus?

Cancer and life-threatening illness are an equal tragedy. I have told my husband, kids, mom and dad that I love them every day since this ordeal began. I intend to do that every day for the rest of my life, but I haven't always. I've been distracted by less important things, but vow to not let that happen again.

Peter Jennings died of lung cancer a few years ago. Since those 3,000+ people perished 7 years ago today, hundreds of thousands have succumbed to this disease and hundreds of thousands more, incluidng me, are in the throes of battle.

So on this day of remembrance, remember not only the events of September 11th, but remember the important people in your life. All of us are fleeting beings, and too often it is only after someone is gone that we reflect on how very much they meant to us.

Taking a Bye on Blogging

I haven't blogged in a few days. This is a good thing. Mostly because I've been busy living my life. I'm stronger, with more mobility, and very little pain. I'm reading with the kids at school. Helping with homework. Visiting with friends. Running errands. Even went to the gym yesterday and rode the bike 10 miles. Go me! Getting back to life is a welcome distraction and is absolutely my way of coping.

When I had Hodgkin's Lymphoma back in the early 80s, I stayed in school, continued my extra-curricular activities (including racing on the ski team), and attended UCSD while receiving chemo. Lots of people were amazed. I was just doing what I needed to do. Sitting around is not something I've ever been good at, regardless of how I feel. There is far too much to do. Life is rich, and I don't want to miss a moment.

And so it will be again. This morning we see the oncologist. I'm nervous. Both because he may say something I'm not expecting. "You're Stage II, not Stage I." "We need to go in and take the axillary nodes." "You'll need very aggressive treatment." "Recurrence is likely." "We can start today."

And because he may say something I am expecting. "You're going to feel sick." "You're going to lose your hair." "You're going to be weak." "You're going to need to stay away from crowds." Yeah. Been there, done that.

Of course the latter is far more likely, based on what we know so far. But there are many unknowns still. Hormone receptivity, for example. What's that all about? Stay tuned. Additional diagnostics for staging ... scans and the like. Fun stuff.

I'm going armed with a long list of questions and my calendar through the end of the year. There are certain milestone dates during which I want to feel good. My father-in-law's 80th birthday celebration in Florida in December. The Girl Scout bridging ceremony. My daughter's 11th birthday weekend. Thanksgiving. Christmas. I'll have to prioritize and take what I can get, I suppose.

So if I don't blog for a few days it just means I'm busy being present in my life. Laughing with my kids. Relaxing with my husband. Talking to my mom. Visiting with friends. Knitting. Reading. Cooking. Being. Breathing.

At the end of the day, these are the things that make up the precious moments of this precious and fleeting thing called life.

Comfort Food

I had a Happy Meal yesterday. Yep. Cheeseburger, fries, coke. And of course, the toy. What good is a Happy Meal without the toy? Of course the toy was for something called Clone Wars which I know little about. But I did get the Obe Wan Kanobe character from Star Trek so at least that made a little bit of sense.

My first job out of college was with a medical device company in Carlsbad, CA. I was hired as a desktop publisher and worked with a graphic designer who became a lifelong friend. She introduce me to the Happy Meal as adult-comfort-food way back then. It actually makes a lot of sense for a number of reasons. One, you get small portions of everything you love about McDonald's. Unlike the super-sized #4, your portions are controlled so you can fulfill the ever-present need to "eat the whole thing." So many times one or the other of us would say "feel like a Happy Meal?", and off to Mickey Ds we'd go.

That same friend came to see me yesterday. She lives in the desert and drove quite a long way to get here. "What can I bring you for lunch?" she asked. "Hmmmmmm ... maybe just a sandwich. No, what about a Happy Meal?"

She laughed. "We could do that," she said.

"I probably shouldn't eat that stuff," I replied.

"Well you only live once."

"You're right. Happy Meal it is."

So she arrived with two white bags in hand.

"What'd we get? What'd we get?" We both said. We got a really good laugh when we pulled the toys out and neither had any idea what they were. As I said, I recognized Obe Wan. My friend got an orange-faced lady who appeared to be clutching a light-up phallus ... I mean light-saber. Thankfully the kids arrived home shortly and set us straight on the whole Clone Wars thing (minus the phallus, of course).

What is it about comfort food in times of need? As soon as we hear of someone who is ill, laid up, or otherwise facing one of life's challenges, our inclination turns to food. We've got two refrigerators, both of which are stuffed to the gills with things sent or brought by people we love, and who love us, I suppose. It started with the homemade tinga. For those who don't know it's a delicious Mexican dish including pulled pork, chicken and beef, all cooked in a yummy sauce and delivered with tortillas actually made in Mexico. My first real meal out of the hospital, and it was soooooooo good.

There's the Honeybaked Ham with all the trimmings (no calories there). The homemade chili with cornbread muffins. The delicious meaty lasagna (thanks to the cook ... the kids were terrified it would be laden with spinach. Yep, the cook has kids ... you know who you are!). There are the quiches and soup that were delivered while I was sleeping by someone I'd never met. An angel enlisted by an out of town friend to bring us comfort in our time of need. There are the containers filled with frozen chicken crepes and enchiladas. There is the very generous gift certificate given by my department at work for an online meal delivery service. We're holding on to that for when the parade of food deliveries slows down. And then there's the chocolate. Pink M & Ms 'for the cure', two enormous hershey bars, truffels, chocolate covered pretzels, bags of snack food from Trader Joes. Yep. We're flush with foodstuffs. No doubt about it.

Yesterday my mom started chemo. We were all so anxious about how the day would go. When I had chemo 25 years ago there were no anti-nausea drugs and I would pretty much plan on not eating at all for a good 24 hours, else it would come right back up. Nowadays they have all kinds of medications to keep nausea at bay. Mom got some of those. I talked to her last night after she'd been infused with toxic chemotherapy for 6+ hours. After I got over my surprise that she answered the phone and sounded just like mom, I said "How are you doing?"

"Well, I've just finished an entire cheeseburger."

After laughing to myself and sharing my disbelief ... I mean who eats a cheeseburger after a full day of chemo ... I realized that we had a ten-minute conversation where she didn't cough once. First time that's happened in two months. Yesterday was a new day, as is today.

What a comforting thing.

The Benefits of Being Pushy

So I took a break from the blogosophere for the long weekend. I think I needed to just "be" with my family and friends and process the realities of my mom's situation. All emerged more clearly this morning so I'm back in the blog-saddle again.

Went to see both my general surgeon and plastic surgeon today. The general surgeon came in and said "I have good news, and I have news." What the !@#$% is that supposed to mean?

"The good news is that your disease is Stage I disease and the margins are clear. " I had expected that I would be officially dubbed "Stage 1" so this was comforting, but I was waiting for the other shoe to drop ... Damn that Damocles.

"The news is as follows. The sentinel node on your left side, where we knew you had cancer, shows microscopic presence of tumour cells. The right side, where we thought you had NO cancer, shows both ductal carcinoma in situ and lobular carcinoma in situ throughout the breast. No tumours, but evidence of disease all over the place."

OK, recall that when I was initially diagnosed my oncologist tried to talk me out of even doing the double mastectomy. Oy.

"Plus, the lymph node on the right side shows microscopic presence of tumour cells too."

Are you kidding me? Recall that after they roto-rootered my right breast it was concluded that I had no cancer on the right side. I had to persuade my doctor to go along with the lymph node biopsy on that side, especially because once you've done the mastectomy you lose the opportunity to do the sentinel lymph node biopsy. Ultimately she was very supportive of my need to be ultra-aggressive.

So, the bottom line is twofold.

1) I will definitely have chemotherapy. Bummer, yes, but had the doctor not recommended it I might have talked him into giving it to me anyway! I want to be as aggressive as I possibly can and I learned the first time 'round that it only takes a rebel cell to cause recurrence. Chemo is a body-wide treatment and it's much harder for those little rascals to hide. I'll see the oncologist next Tuesday to get the whole scoop. I also hope to go wig-shopping with my mom some time in the next few weeks. How crazy is that? Both of us starting chemotherapy within a week of each other. She starts hers on Thursday. Read more about that at www.carepages.com and search for Louise Mericle.

2) No one knows your body like you do. You MUST trust your instincts and question your doctors. You need to trust your doctors too, yes. But question them always. I didn't know if I had cancer on the right side, but I sure as heck knew I wanted to find out and know FOR SURE what I was dealing with. If I hadn't pushed for the treatment plan I got, I would have likely gone through the motions, possibly had chemo and taken care of the disease on the left side, but not addressed the festering disease on the right side. I would likely have been back in the same place in five years and perhaps in a far more dire circumstance. Yikes.

So, armed with that news we headed north to the schwanky plastic surgeon's office in Del Mar. He's very pleased with how I'm healing and thankfully took all of the bondages (I mean bandages) off so I'm MUCH more comfortable. Given the chemotherapy scenario, he'll likely wait until I'm done before beginning the expansion process. Looks like I'm in for 6 cycles of chemo, one every three weeks, which puts me right around Christmas time. So, I'm hopeful that I'll be all put back together again and bikini-ready by next summer. Stinks that it takes that long ... but certainly beats the alternative.

So, now I need to address how to get on with the business of living in the midst of all of this. There are children to raise, husbands to care for, parents to support, jobs to do, all that jazz. In the meantime, I'll be donning all kinds of things to convince each and every one of you that I'm a fully intact 43-year old woman. You'll have the advantage of knowing the truth, but please play along for those not as informed ... :-)

So stay tuned ... same blog place ... same blog channel.