Surviving Cancer Not So Simple

When the cancer doc says, “you’re cured, go home,” it’s not the end of the story.

In about a year, roughly eight years out from my year-long, every-three-week Herception treatment that targeted the over-expression of a certain protein in my tumor, doctors will start monitoring my heart. Why? Because the same drug that may be saving my life right this very minute, also has the power to compromise heart function after about 3,000 days.

(oh, and the chemotherapy drug Adriamycin that I received via dose-dense infusion on four separate occasions can also cause heart damage.) (dose dense means given every two weeks instead of three.)

(oh, and the radiation that zapped the breast right over my heart every day for 30+ days can also cause heart damage.)

I choose not to think too much about these potential side effects.

Still.

My point:

Surviving cancer is not so simple.

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Julie Clark: On Cancer and Making Kids Smile

Tell us a little about your life at the time you were diagnosed?
I was first diagnosed with breast cancer in 2004, at the age of 37. My life was stressful, but terrific. I had sold Baby Einstein to Disney and was financially lucky, and I was in the midst of filming a video for my new company, The Safe Side. I was raising my daughters, and I was happy and healthy. I ate well and worked out most days.
Can you share a bit about your diagnoses and treatments?
When I found the lump in my breast the first time, I was ‘lucky’ because the disease was stage 1. The tumor was under 1cm in size, and it had not visibly spread to my lymph nodes. Though a lumpectomy was recommended, I opted for a double mastectomy. I was devastated by the cancer, and wanted to assure that this would never happen to me again.
Unfortunately, it still did. In 2008 I found another small lump on my chest wall. When I learned that the cancer had spread to my lymph nodes and liver, I was in shock. I heard the words Stage 4 in relation to me, and I couldn’t believe it. I did chemo and Herceptin (another cancer treatment) for five months, and came out with no evidence of disease — the best news I could expect. Now it’s about maintenance. Trying to stay in this place. I had my ovaries out, because my cancer was estrogen positive. I take a medication called Femara to help shut down any additional estrogen from my body. I have osteoporosis in my spine and neck from early, forced menopause, but I’m here. And thankful to be so.
How old were your kids when you were first diagnosed, and how did they handle the cancer news?
They were six and nine the first time, and eleven and thirteen the second time. The first time they were young, and I was really optimistic that I’d caught it early and eradicated it. The second time was harder. They were older, and had a better understanding of what it could mean. They knew people died from cancer. And chemotherapy was worse to watch than surgery, because I really looked sick. That’s when I saw the need for a book like You Are the Best Medicine.
How did you deal with having a recurrence (mentally, physically and emotionally)?
Anxiety. Fear. Depression. Shock. I still feel these emotions, but I also feel hopeful. I feel grateful for the beautiful life that I have, and lucky to have my current health status.
What “aha” moment led you to write “You Are the Best Medicine”?
I’ve never seen myself as a very brave person. I don’t deal well with physical pain. But I knew that I would be brave and strong because I wanted to be around for my children, and I wanted them to know how much they were a part of my strength and hope. I wrote the book because I wanted to give other people with cancer a way to tell their children the same important message.
What do you hope is the end result of having written this book?
I hope it will help kids understand how much their love means. And I hope to raise $100,000 for the research team at UCLA, to help with their incredible work in finding a cure for all cancers.
Since you have accomplished so much, what do you hope will be your greatest legacy one day?
Julie Clark made children smile.
Julie Clark
Julie Clark

Julie Clark (you know, Baby Einstein Julie Clark!) recently worked with me on a giveaway of her new children’s book, “You Are the Best Medicine,” and then she kindly answered some questions for me about her breast cancer journey. What follows is what Julie has to say about being diagnosed with cancer — twice — and how important kids (hers and yours!) are in her life.

Tell us a little about your life at the time you were diagnosed?

I was first diagnosed with breast cancer in 2004, at the age of 37. My life was stressful, but terrific. I had sold Baby Einstein to Disney and was financially lucky, and I was in the midst of filming a video for my new company, The Safe Side. I was raising my daughters, and I was happy and healthy. I ate well and worked out most days.

Can you share a bit about your diagnoses and treatments?

When I found the lump in my breast the first time, I was ‘lucky’ because the disease was stage 1. The tumor was under 1cm in size, and it had not visibly spread to my lymph nodes. Though a lumpectomy was recommended, I opted for a double mastectomy. I was devastated by the cancer, and wanted to assure that this would never happen to me again.

Unfortunately, it still did. In 2008 I found another small lump on my chest wall. When I learned that the cancer had spread to my lymph nodes and liver, I was in shock. I heard the words Stage 4 in relation to me, and I couldn’t believe it. I did chemo and Herceptin (another cancer treatment) for five months, and came out with no evidence of disease — the best news I could expect. Now it’s about maintenance. Trying to stay in this place. I had my ovaries out, because my cancer was estrogen positive. I take a medication called Femara to help shut down any additional estrogen from my body. I have osteoporosis in my spine and neck from early, forced menopause, but I’m here. And thankful to be so.

How old were your kids when you were first diagnosed, and how did they handle the cancer news?

They were six and nine the first time, and eleven and thirteen the second time. The first time they were young, and I was really optimistic that I’d caught it early and eradicated it. The second time was harder. They were older, and had a better understanding of what it could mean. They knew people died from cancer. And chemotherapy was worse to watch than surgery, because I really looked sick. That’s when I saw the need for a book like “You Are the Best Medicine.”

How did you deal with having a recurrence (mentally, physically and emotionally)?

Anxiety. Fear. Depression. Shock. I still feel these emotions, but I also feel hopeful. I feel grateful for the beautiful life that I have, and lucky to have my current health status.

What “aha” moment led you to write “You Are the Best Medicine”?

I’ve never seen myself as a very brave person. I don’t deal well with physical pain. But I knew that I would be brave and strong because I wanted to be around for my children, and I wanted them to know how much they were a part of my strength and hope. I wrote the book because I wanted to give other people with cancer a way to tell their children the same important message.

What do you hope is the end result of having written this book?

I hope it will help kids understand how much their love means. And I hope to raise $100,000 for the research team at UCLA, to help with their incredible work in finding a cure for all cancers.

Since you have accomplished so much, what do you hope will be your greatest legacy one day?

Julie Clark made children smile.

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Surviving Cancer — and Its Side Effects

Oncology: a branch of medicine that deals with tumors (cancer).
Oncology: a branch of medicine that deals with tumors (cancer).

I went for another cancer check-up this morning, the first since my 5-year cancerversary. Mostly, everything is A-OK — so well, in fact, that I now get to see my favorite doctor once a year instead of every six months.

But with the happy hooplah of surviving cancer for a good amount of time comes the fact that I need to start thinking about surviving the side effects of cancer for a good amount of time. There are certain issues that come with life after cancer. For me, it’s mostly heart stuff.

Three things that might affect my heart: the chemo drug Adriamycin (I had four doses), radiation (it was delivered right on top of my heart) and Herceptin (the wonder drug I received for one year). All three of these life-savers can compromise heart function over time. “You should be so lucky to get heart disease in 20 years,” someone once told me, “because it means you will have survived cancer for 20 years.” Yea, that doesn’t make me feel so relieved. In fact, it’s apparently cause for a consultation.

Someone is going to contact me soon to discuss survivorship issues, says my doc, and this person will notify my primary physician of potential concerns, too, so he can monitor me appropriately. I’m not overly concerned about this, really. I’m basically just thankful to be alive, with a heart that today is very strong. For now, that’s just enough.

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It could be worse

jt-aug-2008-034.JPGJoey's new mantra: It could be worse. He uses it to excuse his questionable behavior—like when he was playing at the dinner table recently, waving his arms all around like we tell him not to do, and he knocked over his cup of milk. "It could be worse," he announced after locking eyes with my frustrated gaze. Not exactly my preferred response—"I'm sorry, mom, I know I shouldn't have been horsing around and it won't happen again" would have been my pick—but hey, the kid is seven. How much can I expect, really? Besides, he's right. It could be worse.

Sometimes Joey is wise beyond his years. The kid always gives me something to think about. Once Joey told his dad about the grandfather he never knew (he died before Joey was even born): "Don't worry that your dad can't see you anymore. He's in the sky now and the clouds are his eyes." He told me three years ago that cancer is "medicine and love." Pretty good way to sum it up—I got lots of medicine and lots of love. I'm not sure in hindsight that I'd describe it much differently.

It could be worse. I keep thinking about this and realizing Joey is right on with this perspective.

Back to cancer.

I found a lump—early. It could have been worse. It could have spread. It could have been larger.

I had a lumpectomy. It could have been worse. I could have had a mastectomy.

I had chemo, and it made me sick. It could have been worse. My cancer could have been so bad chemo wouldn't have worked.

I was hospitalized twice during treatment. It could have been worse. I could have been hospitalized three, four, five times.

I had radiation, and my skin burned slightly. It could have been worse. My skin could have been left sizzled and scorched. I could have been in pain. I wasn't.

I had more drug therapy. It could have been worse. I could have been a non-candidate for the treatment (Herceptin), which could be the very thing saving my life.

I went to counseling for more than one year and took an anti-depressant too. It could have been worse. I could have denied these forms of help and could be battling depression and anxiety at this very moment. I'm not. I'm happy.

I could go on and on, but I think you get my drift. I hope you get how this applies to your life too. Try this next time you’re down in the dumps: Tell yourself: It could be worse. See if it makes a difference. It does for me.

And Joey too.

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See my boobs

dsc_0195.JPGSee these boobs? Protruding outward in all their glory. Pushed up in a fancy bra, positioned under a tight pink shirt, pointing right at you as you read this post. These are the very boobs that threatened to take my life almost four years ago. Well, the cancer inside the boob—just the left one, to be exact—is what made the threat. The boob was simply the packaging for the tumor that presented itself underneath my fingertips on that horrible November day, in that hot, steamy shower where I thought I would merely wash my body, not find a cancerous mass.

A mass I did find—a mass a surgeon removed, an oncologist poisoned, another oncologist radiated, and the first oncologist targeted with the glorious drug Herceptin. Thanks to these two men and one woman, the mass I found is gone. So are all traces of cancer that could have started pouring through my system but for now, have not.

Yes, the mass is gone. My boobs, they are not. And this is such great news that I just have to share—my joy, my relief, my pride over having two very healthy and hearty boobs that will be featured in published form in September when they hit the newsstands inside Family Circle magazine.

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It’s a wrap for Herceptin

No more Herceptin. No more infusions. No more pink chairs and chemo nurses and my favorite pharmacist who mixed my drugs with me in mind. No more hours spent waiting. No more hours spent visiting, hours spent observing, hours spent thinking. No more personal retreats to a place that became home. No more powerful potions saving me from cancer. No more bald head. No more sprouts of short brown curly hair. No more every-third Wednesday. No more. No more. No more.

It’s only me. And my port that I will keep. Just in case. And a stop every month to keep it clean. And one scan of my heart. To check for damage. And periodic follow-ups. And longer brown curly hair. Long enough to pull back, straighten, style. And memories of a place that took cancer away and gave me a life more precious than ever before. A life that is all my own. On my own.

One year behind me. Fifty-two weeks of treatment. Seventeen infusions. All above and beyond my initial treatment plan. An extra protection to stop cancer from returning. Because of studies and trials and women who lost their lives before me, I benefit. I am a recipient of this wonder drug. I am a recipient of the gift of life. I am happy. I am relieved. I am thankful. I am overwhelmed. I am sad.

No more active treatment. No more help from cancer-fighting drugs. No more constant attention. No more company in strangers who are like me. No more strength in numbers.

Just me. And my safety nets. Zoloft. Counseling. Family. Friends. Writing. Sharing. Praying. Helping. Honoring. Hoping. Laughing. Making sense of it all. Making it matter.

Today, the real surviving begins.

Jacki Donaldson

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Reflections

I went for my Herceptin infusion today thinking that after today’s dose, I had two more infusions ahead of me. But I don’t have two more remaining — I have one. So the end, which seemed so far away at the beginning, is upon me. The end of 52 whole weeks of Herceptin. The end of my visits on every third Wednesday. The end of the pink recliner and the community of cancer patients who surround me. The end of chemo nurses taking care of me. And maybe most important — the end of my own little getaway that was scheduled and required and never canceled. While John watched the boys, I spent several hours relaxing, thinking, breathing, reading, sleeping. Despite the reason for my mini-vacations over the past year — cancer — I have enjoyed the peace and the quiet and the time for reflection. Here are some of my reflections as my last visit to the infusion center approaches on June 28 and this one-year treatment comes to a close.

  • There is light at the end of the tunnel. I have been tunneling through this cancer journey for almost 19 months and I can truly look back and wonder where the time has gone. Some days are long and some moments are bad, but time does heal wounds and pain and despair — and the light of the world does return.
  • My children are more beautiful and glorious to me now than they ever have been.
  • Some people do not get to live their lives over again — I do. And I want no regrets.
  • I have many angels in my life — family and friends and people who have never met me. They are priceless.
  • Hair does grow back. Mine was only just sprouting when I received my first Herceptin dose in July 2005 and now it’s long enough to pull into a clip.
  • My port is a gift. Never have my veins been stuck or injured or damaged by needles or drugs. I watched a nurse today struggle to insert an IV into a man’s arm. One quick stick is all it takes to access my port and drugs flow in effortlessly and efficiently.
  • Medicine is powerful. It saved my life.
  • Attitude is powerful. It saved my life.
  • Cancer survivors are powerful. They empower me and inspire me and make me want to fight.
  • Everything happens for a reason. Whatever the reason, I am okay with having had cancer.
  • I can find many silver linings in my cancer cloud — and one day, I’ll post them here.

For today, I will stop. My three boys are outside playing in the yard — two of them are wearing Superman pajamas and capes — and I don’t want to miss the moment.

Jacki Donaldson

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Immortality

I heard a woman in the Cancer Center waiting room today say to a man I assume was her father, “When I was 18, I thought I was immortal.” I thought the same thing, that I was immortal, at age 34, just before cancer flashed in front of my face and reminded me that I am not. And today, looking at the man I think was this woman’s father, I felt deep in my gut a sad realization that life passes by so quickly. I know this from watching Joey grow in no time from a chubby, cuddly baby into a long, lean five-year-old who is about to perform in a school musical this weekend. And from watching Danny, my second chubby, cuddly baby who asks each day, “Am I three now?” I tell him, “Not yet. In two months.” He asks, “Is it a long time?” and I tell him, “Yes, for you, it’s a long time,” all the while knowing that for me, two months is nothing but a just quick passage of time that will end with Danny’s third birthday and will make me long for the days when my babies were babies.

Life moves at a fast pace. I’m sure it did for this man in the waiting room. I heard him reminiscing about his younger days. I heard him say, “When I was the captain of a DC-3,” and he talked about flying planes and landing planes and airports. Today, this man is elderly. His skin is wrinkled; his posture is slumped. He looked fragile, and it made me sad to witness an image of aging, knowing this is what happens as time ticks on. And it made me sad to see him in the pink infusion chair, receiving treatment for an illness that is undoubtedly threatening the life that is already passing him by. But I am also inspired by this man who is fighting for those precious moments in life. He had no sadness about him. Perhaps with age comes a wisdom that the passing of time is an OK process, the way life is meant to be. And mortality comes with life (cancer or no cancer) and being reminded of it is not such a bad thing but a wake-up call to appreciate the teeny tiny moments that pass by so quickly. Like when Danny said to me last night at the dress rehearsal for Joey’s musical, “Mommy, you are pretty.” Or when I poured his cereal into a bowl the other day and he said, “Good job, Mommy!” So while I regret that my boys are growing so quickly and I am aging right along with them, I also would not trade these phenomena for anything. So when I have moments of sadness about mortality, I will focus on the gift of life that allows me to watch my babies grow up, however startling and swift the process may be.

I am thankful today for the glimpse of the man in the waiting room. I am thankful for the life I have with two little growing boys and one big boy who takes care of them while I receive my Herceptin treatment. And I am thankful for my Herceptin treatment and the fact that it is likely giving me more life than I may have had without it.

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My heart

“In a small number of women, Herceptin alone or in combination with chemotherapy can lead to serious heart problems including ventricular dysfunction and congestive heart failure . . . Women considering Herceptin should have their heart function evaluated by a physician before beginning treatment. Once on Herceptin, women should be closely monitored for any heart problems that may occur.” (From: http://imaginis.com)

Today I had my heart monitored for Herceptin-related problems. I first had this done in July, prior to the start of treatment. I learned at that time that my heart was normal and healthy and strong. Today I learned that nothing has changed. My heart is still normal and healthy and strong. Herceptin has not affected my heart. From what I understand, if my heart has not suffered up to this point, it is likely that nothing will happen as a result of my next seven treatments. A victory. A relief. The good part of my day.

The not-so-good part of my day involved multiple attempts at effective discipline with my “spirited” Joey — attempts that leave me frustrated and angry and full of questions about how to best guide a five-year-old with such stubborn tendencies. Today Joey teased Danny, refused to listen to much of anything, talked back to me, laughed at me when I spoke firmly with him, slammed doors, and told me more than once, “Mommy, I am mad at you.” None of these behaviors is odd for Joey — they are sprinkled into many of our daily moments — but there were more of these moments today and they drove me to the edge of my emotional capacity.

And then I distracted Joey with arts and crafts. Joey said to me the other night, “Mommy, what do you know a lot about? Arts and crafts?” I told him, “yes, I guess I do.” This came right after he asked me to tell him a story about space — like his Daddy does every night before bed. I told him I really don’t know much about space. Arts and crafts I can handle, though. So I dug out two shoe boxes — one for Joey and one for me. We tipped the open shoe boxes so they faced us and we made three-dimensional type scenes. We cut and glued and taped and talked. Joey is still proud of the boat he made — complete with steering wheel — and the ocean he made from blue paper and the rocks he made with kidney beans and the fence he made with white ribbon. And I am still proud that for one hour, I was able to engage Joey is an activity that kept our threesome mostly calm and quiet and focused.

I am not sure that distraction is the best discipline method — but I’m not completely sure about any other method I’ve tried either. Distraction does work in the short term — it stops the behavior and allows us to start fresh with a new activity. I don’t know if it teaches anything, though. But I don’t know either if Joey is capable right now of learning the life-long lessons I want him to know. Sometimes I think, “the kid is five — he should know better.” Other times I think, “he is only five — maybe he can’t know better.” And so goes the dilemma of parenting. There is always a different perspective, another opinion, a new way of thinking. I think for now I will go with the philosophy that says, “Don’t try to fix everything — just get through it!”

So get through it I will. With my heart full of love for this guy who makes me both crazy and proud. With my heart that is healthy and normal and strong. Thank goodness for that.

Jacki Donaldson

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The hours that follow

In the hours that follow each Herceptin treatment, I have a routine of sorts. Not a purposeful routine. Things just seem to fall into place the same way each time, making every third Wednesday afternoon strikingly similar to all the other third Wednesday afternoons.

I leave the infusion center when my treatment is complete, feeling no ill effects, and I walk to my car. As I drive home, I call John and the boys to tell them I’m on the road and will soon be home. I return home, get a running hug from Danny and a passing glance from Joey, and ask John promptly about what I missed during my 3-4 hour absence from the most important guys in my world. John usually tells me that they wandered in the outdoors or visited Home Depot or just played at home. I always want more details than I get — I want the play-by-play rendition of what I see every day but miss so much when I am away. But I settle for the basics. Do I really need to know, after all, who ate what and who said what and who was happy and who was sad? And could I, myself, accurately recall all this detail if asked? Probably not. So I jump back into the swing of things — which includes dinner and bath and book, an easy bedtime for Danny, and a not-so-easy bedtime for Joey. And then I tend to myself.

I get undressed for a shower and look for the first time since my infusion at the small round bandaid that covers the port that is buried underneath the skin on the right side of my chest. I peel the bandaid off and see the tiny red dot where the IV needle poked me, sat in my skin for a few hours, and then was pulled out. It no longer bleeds but it looks sore and irritated. It is not painful really — but it gives me a queasy feeling to look at it and this is the first tangible reminder of my treatment earlier in the day.

There is something about tending to my own medical needs that makes me queasy — like pulling off the bandaid and really thinking about this foreign item under my skin. I have felt like this when removing bandages after surgeries, when applying ointment to my own wounds, when merely considering the thought of giving myself an injection. And I feel this when I first go the bathroom after my Herceptin treatment. Herceptin has a unique odor and I can smell the drug as it exits my body. It repulses me — and is my second reminder of what occurred hours before this moment.

And then, perhaps because of a physical reaction to Herceptin but mostly due to a mental habit, I take one Zofran pill — to combat the nausea I begin to feel or think I feel. It’s all I need. I never go on to feel any nausea during the three weeks that follow treatment. Life continues on normally. I have normal happy thoughts and normal sad thoughts and thoughts about whether this drug is making me feel bloated (Joey told me tonight, “When I see this loose skin on your tummy, I think there’s another baby in there.”) and thoughts about new diets and health regimens I’d like to follow once my treatment ends.

I conclude my routine by writing this entry.

And then my night resumes like any other night. I get ready for bed. I relax. I call my mom. I talk with John. I watch TV. I mentally prepare for another day with two busy boys who will keep me completely and fully occupied for each day that follows until my next infusion takes place. And I do it all over again.

Jacki Donaldson

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Blessing

I recently read an article about doctors who are not recommending Herceptin therapy for patients they know do not have good insurance or who they suspect will not be able to pay the hefty price of this promising drug. If medical professionals cannot be reimbursed for the financial burden of dispensing Herceptin, they may not offer it to those whose life it may save.

I have insurance, and I was offered the treatment. My insurance pays 80%. I am responsible for 20%. Not so bad until you look at the math. Each Herceptin treatment (every third Wednesday for me) costs about $5,000. My 20% responsibility is $1,000 — that’s $1,000 every three weeks for 52 weeks. So even pretty good insurance doesn’t quite make this medical intervention affordable. But I am doubly blessed — I have insurance that covers the bulk of the burden. And I have family members who help me with the rest.

I think often about how fortunate I am to be free of financial worries in this cancer battle. I have never worried about the cost of tests and screenings and office visits. I have never felt lost in the expense of chemotherapy and radiation and hospital visits where every pill and blood draw and doctor opinion has a special fee. Instead I have felt complete and total peace about a side effect of cancer that crushes so many people. I wonder how we would have done it — paid all the bills that have been arriving at our mailbox for more than a year. Had we paid all bills in full, we would have had nothing left by now. Had we paid just the minimum amount on each bill, we would have been living with a cloud over our heads for possibly the rest of our lives. So I think about those who live this reality — or don’t even get treatment because of their financial situation — and I realize that it could have easily been my family destroyed by cancer bills.

I am blessed. I am thankful — thankful that I can sit in my infusion chair on those Wednesday afternoons without the stress and worry about how I will pay for the clear liquid that may save my life.

Jacki Donaldson

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Excitement

Last week, Danny stood on the side rail of an empty Target shopping cart and pulled the red plastic and metal structure over. It knocked him to the floor and when I saw him, after being prompted by his screams, he was flat on his back with the cart balancing on his chest. Shoppers gasped and Target red shirts surrounded me, offering assistance and kindness. An ambulance and fire truck responded, just to be safe, and it was determined that Danny was just fine. He went home with a plastic fire hat, stickers, and a complimentary blue slushy from the Target staff. When I said to him later that day, “Danny, that was scary,” he said, “No, it was fun.”

Last week, Joey and Danny had their teeth cleaned. Going to the pediatric dentist is always exciting for me because my boys are perfect, well-adjusted, kind little men during their visits (they sometimes are not this way which is why dentist appointments are such special occasions). They get their teeth cleaned while I wait in the waiting room with no complaints, no cries for mommy, no problems. I get to read magazines and sit quietly and peacefully. When they march out to meet me, prizes and toothbrushes in hand, the dentist tells me they are so good and so cute and so sweet. And this time, the dentist also told me that Joey has two loose bottom teeth. Exciting! Especially for a boy who just turned five a few weeks ago. So each day we wiggle Joey’s loose teeth and wonder when they will fall out. We talk about the tooth fairy and what she might bring Joey. We are shocked by this milestone that just happened upon us.

And today, I had another Herceptin treatment. Not so exciting. I slept and am happy for the rest. And I am happy that for now, the excitement of Danny’s ambulance adventure and the thrill of Joey’s loose teeth outweigh the enormity of cancer treatment.

Jacki Donaldson

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When you live

I could not have written it any better. And it’s so fitting for today, when I feel down and emotional and troubled — a world away from how I felt when I wrote my last entry. There is no specific reason for my anxiety today — other than this: I am surviving cancer. And in six months, when my Herceptin treatment ends, I will be surviving in a whole new dimension. I’ll be on my own. And that’s scary.

Thanks for sharing this article, Adriene.

What Happens When You Live

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Happy

Jacki @ chemoMy friend Nicole was with me when this picture was taken at the infusion center today. She said I look happy. Scary may be a better word, but it’s still an important photo for the story it tells.

I sit in a pink chair, usually with my feet propped up and a blanket on my lap, every three weeks on a Wednesday afternoon.

There are pink curtains between each pink chair in the infusion center but I’ve never seen these curtains closed. They remain open and allow for conversation, observation, for the building of community among patients.

I have a port on the right side of my chest, a port that I numb with a cream called Lidosense one hour before my infusion so I can’t feel the thick needle that pierces my skin.

The drug Herceptin drips into the clear tube, into my port, into my jugular vein, and into the rest of the bloodstream. After 90 minutes, saline drips into my body through this same method in order to clean the tube out of Herceptin and to push the remaining drops into my body. Then an injection of blood thinner follows to prevent clots at the site of my port.

The tube is taped to my shirt so I don’t get tangled up in it.

My red bracelet alerts nurses to my allergies to sulfa drugs, the antibiotic cefapime, tegaderm tape, and latex.

I wear shirts to chemo that zip or button so my port can be easily accessed.

My hair is dark and curly, only significant given the fact that it was once naturally blond and straight. My photo albums, yearbooks, framed pictures, driver’s license, credit card photo, campus IDs, and memories capture my previous look. This is new and different and still shocking to me.

My hair is growing. In the five months since my Herceptin therapy started, my hair has changed quite a bit. See photo in July 27 entry.

I clip my hair in the front to manage my new curls that have a mind of their own.

And Nicole is right. I look happy. I am happy. Despite the reason I sit in this pink chair every three weeks and despite the fact that I am fighting to live long enough to see my boys grow up, I am still happy.

Jacki Donaldson

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Until this year

Until this year, I had never mowed a lawn. Someone once told me that if I never learn how, I’ll never be expected to do it. Seemed like good logic to me. But I took the plunge this summer to alleviate some of the lawn work burden that has rested on John’s shoulders for many years. I kind of enjoyed mowing — the physical exertion, the accomplishment of cutting rows into the grass, the neatness of the finished product. I’ll do it again — but I don’t promise to take it on as a regular job. John is still the lawn expert.

Until this year, I had never camped. I’m not much of an outdoor adventure person. I’ve always thought I’d prefer hotels to tents, daily showers to sporadic cleansing of the body, home-cooked meals to campsite goodies. And while I did not exactly “rough it” on my recent camping trip, I did venture into a world previously unknown to me.

My family of four joined relatives (another family of four) at Fort Wilderness — Disney’s campground — and we camped in their RV. There were some luxuries that prevented me from knowing the true camping experience — we had a bathroom, a mini-kitchen, beds, and heat. There were community showers too. Other than the cramped quarters, it was pretty fun. It would have been better had Danny allowed us to sleep. He struggled to fall asleep and then woke much too early, leaving all eight of us with not enough sleep to feel very spunky. So Danny and I returned a night early and left John and Joey for another night of adventure. Danny and I came back to our comfy beds, slept well, and soaked up the joys of being at home.

Until this year, I had never received treatment for cancer. And today, after another Herceptin infusion and one year of almost constant treatment, I realize I am a somewhat of a pro at this process. It’s routine, it’s somewhat effortless, it’s not all that bad. Maybe after a year of mowing lawns, I’d be really good at that too. Or camping. If I continued to partake in the outdoor festivities, I may actually find that it is peaceful to escape from the rush of life, despite lack of sleep.

I think I’m good at my current chemo. And I find the experience peaceful. Maybe it’s the time alone. Or the knowledge that I am actively fighting cancer. Or just the routine of it all. I think when this treatment ends in July, I will feel unsettled. I will be on my own then — just trusting that I will be okay without constant medical intervention.

And then I will adjust to a new experience — living without treatment. I’m sure I can be good at that too. With a little practice. Next year.

Jacki Donaldson

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Time

I spent a lot of time in the infusion center today. Four hours to be exact. Which is a long time for a 90-minute infusion. There is always some delay and often I wait up to an hour before Herceptin begins to travel through my veins. But today was slow. Maybe there was a back-up because of the Thanksgiving holiday. Or maybe there are a slew of new chemo patients this time of year. Or maybe this is the usual business of chemo and I’ve been lucky to get in and out so quickly in the past. Regardless, I still felt lucky today — despite the long afternoon spent in the waiting room and then in pink chair #7. I felt lucky to have those four hours. Lucky to have received the gift that still causes me my most emotional moments — the kindness of those who surround me.

Nicole is a pediatrician at Shands Hospital. She is a new friend and already a good friend. Knowing I had my treatment today, she walked across the hospital campus to the infusion center and she sat with me — for all four hours. We talked about cancer and medicine and our jobs and our husbands. We talked about parenthood (Nicole is a soon-to-be mom) and baby names and our spunky grandmothers and their kind, peaceful ways. We talked about faith and religion and so much more. It was a calm afternoon for me, in the midst of a room that was hectic with activity. Surrounded by the continuous motion of nurses and patients and visitors, the hum of a dozen or more separate conversations, and the rolling of IV poles with their near-constant beeping, I felt focused and relaxed with Nicole seated across from me. And that’s the gift — to be distracted from the magnitude of the day by a friend who sits and talks and is just simply there.

I talked with my Ohio friend, Amy, today. She just completed her third chemo treatment, and she has three more to go. She is discouraged and while half-way there, she can’t visualize getting to the end. But even in her despair, she talked about how amazed she is by what others are doing for her — caring for her kids, cleaning her house, supporting her. This kindness comes at a cost — the cost of cancer — but it is refreshing and invigorating. It helps us pass the time. It helps us appreciate the time. It helps all the time.

Time will heal our wounds. The pain will fade. The struggles will be memories. But I think the friendship and the love and the support will live on. These gifts are the stuff that get us through the hard times and the stuff that keep us going.

We are the lucky ones, really. Lucky we have the chance to witness the true wonder of good people. Lucky to have friends like Nicole.

Jacki Donaldson

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The here & now

my hairIt feels good to know that Herceptin is such a promising drug. Just today, after receiving my fifth dose of this treatment, I heard on ABC news that Herceptin is simply a wonder potion. In fact, the drug was taken out of clinical trials early so doctors could start putting it to use. The results were that good.

It also feels good to know that through other people’s eyes, my hair looks good. Today while at the Cancer Center, a physician assistant said it was “gorgeous.” Another woman admired my hair while we stood in the infusion center. A 36-year-old lymphoma patient whose hair was just beginning to grow back, she was speculating about how her hair would look once it was as long as mine. As long as mine. It does seem long compared to the days when all I saw was a shiny scalp. But when I consider that it’s been eight whole months since my hair started growing, my dark locks don’t seem that long at all. It doesn’t seem that gorgeous to me either. Some days I do like it. I like that it’s easy. I like that it looks stylish on a good day. I like the dark color sometimes too. But mostly, I am struggling to accept my new look. It’s strange to look in the mirror and recall the blond, straight hair I had for 34 years. I never would have cut my hair this short, or added so much dark curl, so to look at this extreme makeover is still startling. It’s minor really. I am alive and would give up all my hair forever if staying alive was guaranteed for a really long time. But in the here and now, it’s an adjustment. The compliments help, though. It’s flattering to know others like my hair. One day I may really like it too.

Despite the promise of Herceptin and my still overall feeling that I am going to survive my cancer battle, there are moments when I feel so unlike I once felt. Maybe it’s the hair that changes my whole appearance. Or the port that sticks out of my chest and today shows where a needle stuck me twice — once so painfully I wanted to scream. Maybe it’s the thought every time I wash myself in the shower that I might find another lump. Or that chemo is not preventing cancer cells from traveling through my body. Maybe it’s the mammogram I will receive in November — the first one since my breast cancer diagnosis. It could be anything — and it’s probably everything — that has changed my life, my perspective, my hopes and fears.

These chemo days bring everything to the forefront. They remind me of what I’m fighting for — my life. And that is daunting. But also a reality check. And now I can proceed with the next three weeks, thankful that I am right now a healthy and productive recipient of the life-saving Herceptin — with a head full of thick, dark, curly hair.

Jacki Donaldson

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Hope

On Saturday, my mom and I attended a half-day seminar on the topic of breast cancer. It was sponsored by Shands Hospital and many of the speakers were my own medical people — a surgeon who took my blood prior to my lumpectomy for research purposes, an oncologist who treated me both times I was hospitalized during my first chemo regimen, my physical therapist, and the woman who coordinated my initial care when I was first diagnosed. I already knew a lot about what they talked about but I learned that there is a lot on the horizon for breast cancer detection and treatment — like new radiation techniques that can limit the treatment time from seven weeks to just one week and methods for detecting the smallest trace of breast cancer before it begins to grow. My physical therapist is studying cancer-related fatigue (I think I have it!) and how to manage it. It amazes me that these medical professionals are spending their work days seeking cures and miracles. What a huge responsibility. What a noble cause. I am lucky to be in their care.

But after hearing about all the science and hope and possibilities, I am reminded mostly of one loud and clear message I heard on this day. The oncologist spoke about the components of breast cancer tumors — there are about six criteria that are taken into consideration when studying a tumor, such as age, stage, grade, lymph node status, hormone receptivity, and HER-2 status. My criteria are: age 34 at diagnosis, stage 1 (out of 4), grade 2 (out of 3), lymph node negative, ER/PR negative, and HER-2 positive. Some of this is good; some not so good. A balance that has left me feeling okay about my personal situation. But the oncologist said, “even a good tumor in a young women is a bad tumor.”

I guess I knew this. My age is what qualified me for aggressive treatment — because young women have the most aggressive tumors. But to hear it spoken in a formal teaching setting, and in somewhat of a grim tone, is troubling. But I’m OK. I’m not wounded by this bit of information and I’m not anxious like I once would be. I still feel like I am winning my battle, so I can take this in stride. And if cancer comes back to me one day, I’ll just keep fighting — like this young woman who is quoted in the book, “Hope Lives: The After Breast Cancer Treatment Survival Handbook.”

“Why do I keep going through treatment when there is no permanent cure? I ask myself this every time. There are no options other than death, which to me is no option. It’s not that I fear death. I really don’t anymore. I just love life too much to quit. It’s a race against time. Treatment buys me time until they come up with new drugs or new ways to treat this illness. I’m not quitting.”

Robin, age 38, diagnosed 1996, 1998, 1999

Jacki Donaldson

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The fight

Last night I read this in the August 2005 Family Circle magazine:

Better Breast Cancer Treatment

A combination of drugs can significantly decrease cancer recurrence in women with the disease known as HER-2 positive breast cancer, according to multicenter clinical trials sponsored by the National Cancer Institute. Nearly one out of four cases of breast cancer is HER-2 positive, says lead researcher Edward Romond, M.D. These women have an overproduction of the HER-2 protein in cancer cells; this speeds cancer growth and increases the risk of spreading. For the trials, 1,679 women with HER-2 positive breast cancer in their lymph nodes received chemotherapy alone and 1,672 with the same disease received chemotherapy and weekly injections of trastuzumab for 52 weeks. After three years, those who received trastuzumab and chemo had a 52 percent dip in cancer recurrence compared to women who received chemotherapy alone. Side effects include weakening of the heart muscle; however, most patients regain normal function, says Dr. Romond.

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Today, I received my fourth dose of trastuzumab, also known as Herceptin. I fit the profile of the women who received chemo first and then Herceptin injections so the hope is that over my own 52-week treatment, my chances of recurrence will decrease. Unlike the women in the study, I did not have spread to my lymph nodes — but I am young and young women typically have more aggressive tumors so my treatment plan follows a somewhat radical approach.

My actual Herceptin treatment does not feel so radical because I don’t feel much at all. I just sit while a clear liquid drips through my port and into my jugular vein and then spreads throughout my body. I don’t get sick. I won’t lose my hair. My blood counts do not suffer. Besides some fatigue, it’s okay. And a bit relaxing too.

Today I slept in my reclined pink chair. It was quiet — I was one of three or four patients and the nurses worked at a more leisurely pace than usual. It was peaceful. But the whole chemo experience is still emotional and challenging. It doesn’t matter if the infusion room is overwhelmed with activity or quiet with just a few patients — I am still painfully aware of the obvious: that we are all there to fight for our lives. It’s empowering, and it’s sobering.

This evening, I came home and resumed my usual activities and got back to life — not without thinking about the importance of my every-three-week infusion but with a dull notion of it all. The power of the day will continue to fade over the next three weeks, until I report back to the pink chair and it all becomes crystal clear again — a reminder that life is precious and delicate and worth fighting for.

Jacki Donaldson

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Solo

Today was my first solo chemo mission. I went by myself, sat by myself, entertained myself, and drove myself home. It seemed time I handled this chore on my own. I am able to do it by myself. And it seems there won’t be any emergency situation that results from this drug. So I don’t need a safety person with me. I’d rather my mom and sister go about their routines for the next 10 months without having to sit with me each time for hours and hours. I can handle this routine now. Company is nice — but being alone is nice too. For me, it’s like enjoying a walk with others but finding equal pleasure in walking alone with my headsets on. Just me and my music.

Today it was just me and my thoughts. It was quiet and peaceful. And I survived my third treatment of Herceptin. One step closer to the end.

Jacki Donaldson

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