Friday, May 17, 2013

Moving On!

It's been more than a year since I was diagnosed with breast cancer, and a recent mammogram confirmed the cancer is gone. I was very pleased, of course. I feel great, I have hair again (darn, it's still that uncontrollable curly mop) and life is back to normal. I continue to receive one drug through infusion every three weeks but it has no noticeable side effects. That will continue through the end of June, and in July my port will be removed and I will be able to wear tank shirts without looking like an alien is protruding from my upper chest. It's truly scary looking - sometimes when I wear a tank top around the house I'll catch my kids staring at the bump with a slight look of fear. It's so unattractive. But it's been a lifeline to health so I won't knock it.

Celebrating health and a head of hair, at the Cancer Support Community
It's a relief to be able to put this all behind me. But part of me is still fearful that cancer will return, perhaps in the breast or somewhere else. The 5-year survival rate for my type and grade of cancer (Stage 2, invasive ductile carcinoma) is about 85%. It's 98% for women with a type called DCIS. It's considerably lower for the more advanced stages. Hitting that fifth anniversary is a big deal for most ladies. I'm planning on a party, just so you know.

This spring I participated in a writing workshop at the Cancer Support Community -- which is a fabulous place for patients and caregivers by the way -- and at one of the sessions I wrote about my fear of recurrence. It's something every cancer patient thinks about... it sort of lurks in the back of your mind at times. Here it is.


I go on, despite the uncertainty.
I move on, in small, sometimes imperceptible ways.
I soldier on, marching straight ahead,
But with eyes that dart ahead and to the side,
Searching for signs of danger, knowing the enemy
Is quite possibly lurking in some hidden alley or underground bunker,
Ready to spring into action,
To invade,
Rifles loaded, scoped in on me.

I carry on, resolute, stoic, reassuring others,
As if nothing unusual has happened to me
But with legs in the ready stance
Should an attacker come my way.

Risks, I used to think of as things to fear,
Such as skydiving or walking on an icy sidewalk.
Now risks are numbers mentioned by doctors,
Percentages that hold magic,
That seem to know something I don’t.
I bow to them in reverence, not knowing what else to do.

Can You Help?
On a lighter note, tomorrow my mom and I are participating in a fundraising walk for Cancer Support Community. As I mentioned, it's a great place to go if you or a loved one are dealing with cancer. It's part of a nationwide organization formerly known as The Wellness Community. They offer great programs such as Art for Recovery, yoga, Qui Gong, meditation, support groups, healthy cooking classes and a dance/martial arts/movement class called NIA. 

All of the programs are FREE. It's pretty unbelievable. Please consider donating to their fundraiser. Just click on this link and look for DONATE NOW.

While 2013 has been my time for healing, it's been my mom's time for sickness and treatment. Many of you know that my mom, Carol, is undergoing treatment for Chronic Lymphocytic Leukemia (CLL). This is a blood cancer that has no cure, so the goal is to get the patient into remission. After four sessions of chemo (January through April), my mom's oncologist and a specialist determined that the drugs weren't stopping the disease, so now she's participating in a very exciting trial at Siteman Cancer Center.  We'll find out in a few weeks how well the trial drug is working. Only 110 people worldwide are part of the study, and it just opened at Siteman/Washington University two months ago. Great timing, I'd say!

My mom was there for me at my chemo sessions and all my doctor visits, studiously taking notes and asking questions. Now, I'm the scribe and supporter (along with my dad). The tables are turned and I'm just grateful I can be there for her. She's got a great attitude and feels pretty good most of the time. The chemo had been knocking her down quite a bit so we're glad that's over.

Thinking about it now, sometimes it seems unreal that I had cancer, like it was just a bad dream, or something that happened to someone I know. It's gone now, so let's move on. But wait a minute - before we do that I want to thank you, my friends and family, for your supportive notes, meals, visits during chemo sessions, chocolate-covered blueberries, funny books, helpful books, inspirational books, jewelry, flowers, pajamas and phone calls.  I felt VERY LOVED!

I'm thinking right now that I'm not quite ready to give up this blog. So maybe I'll post random thoughts from time to time. I also need to post photos from the Wig Party - it was crazy and fun!

Please sign up to receive an automatic email whenever there's an update. Just add your email address to the box on the right side of the blog. And please share your comments right here on the blog -- it's a great way for me to archive the entire experience. You all have been an important part of my battle and I thank you.

Sunday, November 25, 2012

The Radiation Vault

Written October 30, 2012 in a writer's workshop. Assignment: practicing the use of similes and metaphors. At this point I was almost halfway through my regimen of 33 daily radiation treatments. Now I've got just two more to go. 

The technician escorts me into the room. It’s no ordinary room. The door is six inches thick, made of a gray metal like a bank vault. When I remark on the thickness of the door, the tech informs me that the entire room is surrounded by this metal barrier.  Unlike a bank vault, these walls are designed to keep the bad guys (radiation) in. It’s not a comforting thought when you’re the one inside the vault.

The door is wide open now, but in a few minutes I’ll be alone inside the vault and the door will be closed quietly but firmly, and perhaps even locked. I am a prisoner in solitary confinement. My only contact with the outside world is through a scratchy speaker that the techs use to give me instructions. It’s a one-way speaker.

I’m told when to take in a breath, and when to exhale. This is done in order to protect my heart from the radiation. My tumor was near the chest wall, close to my heart. Each inhalation raises the chest wall away from the heart so those harmful rays don’t damage the organ. Radiating the heart is about as bad an idea as jumping into a pool with sharks or photographing bear cubs when their momma is looking for them.  You’re asking for trouble.

Unfortunately some of the radiation will reach the heart. Like a strong vine that forces its tendrils in between old fence boards, the rays can penetrate the body beyond the planned trajectory.  How much? I don’t know, but that’s okay. The chance of cancer coming back is reduced by 40 percent when you play the radiation game, so I’m taking the risk.

It’s impressive that radiation oncologists have the tools and knowledge to pinpoint the radioactivity and find ways to avoid healthy organs, but it’s still radioactivity and unnerves me a bit if I think too much about it. 

Heart damage scares me. The other night I felt sharp pains in my chest, so I did a scaredy-cat move and Googled “heart attacks in women.” I remembered hearing that women’s symptoms are different than the typical chest pains that men experience, and it’s true. Many women never even have the crushing pains. My sharp pains were very brief and never came back. Ah, just another overreaction.

Chemo #3 - Electric Blue Toenails and Silver Strappy Stilletos

Organization is not one of my strong points. I carry a tremendous amount of guilt for not having created family photo albums as my kids have grown up. All the pictures are in boxes, waiting to be lovingly placed in chronological order in leather-bound, archival quality photo albums, with appropriate and accurate captions to reflect the importance of the event or milestone represented in each photo. I just haven't been able to motivate myself to tackle the project, and each year that ticks by just adds more stress to the whole thing.

Now that I've laid out my terrible secret about neglecting to document my kids' lives, you'll understand why I've failed to organize and post my chemo open house photos (I finally did post chemo #2 a few weeks ago). But my past behavior is in the past and I'm turning a new leaf, folks! I'm going to get all the open house photos on the blog so we'll be caught up. Then once the dust has settled, maybe I'll pull out the hundreds of photos of my kids and start organizing them. (Note the key word "maybe." Just being honest, because I don't know if I have the courage to face all those boxes).

So, here are a few photos from Chemo #3 (June 27) , where we had a fun party at Pratt Frat House. I know more photos were taken but couldn't find them!
Fabulous shoes on loan from my 17-year old shoe patron, Paige (daughter of  Cindy).

Jenny and Liz

Paige (fabulous shoe owner) and Cindy

Sunday, September 30, 2012

Being Mrs. Doubtfire

Greetings from sunny California! I'm taking a respite from my life of doctors' appointments, tests, blood draws, etc.for a 5-day stay with my sister and her cute family at their house in Burbank.  Kathleen and Bob have two kids, ages 6 and 8, so we've been doing what people with kids do..So far we have attended a soccer game and a grade school musical performance, broken up fights, mediated for peace, played Battleship, reviewed my niece's school papers and showered her with praise, and cleaned up crumbs and spills. I forgot how much work it is with young  kids!  But they are both amazing and funny and interesting so it's been great to be with them.

There have been a few challenges.  The kids don't know about my cancer or hair loss, so I'm careful to keep my wig on around the house. I certainly don't want to frighten them with my Uncle Fester look. There have been a few moments where I've felt like Mrs. Doubtfire, such as not noticing until it's too late that my wig is askew, or accidentally walking out of the bathroom all dressed and wearing makeup but bald as a newborn baby. More than once I've had to peek into the hallway to make sure all is clear, and dash to my room and lock myself in while I rummage through my suitcase in search of the wig (which I also have to hide because if they found it I would have many questions to answer!).

I have a terrible fear that my niece, who is a smart, perceptive and curious third grader, will discover my secret. I'm sure she's overheard more than a few conversations between Kathleen and me about my chemo treatments and the way I'm feeling now (which, by the way, is strange... my legs, arms, wrists and ankles are swollen, and my stomach has puffed up so much I look like I'm four months pregnant. I had a bit of swelling that started a few weeks ago, but it got worse on the long flights from St. Louis to Burbank.on Friday. More on that later.).

My niece is exactly like her mother was at that age,  hanging out with the adults and listening to their conversations. At times she's so quiet we forget she's in the room, but most of the time Kathleen and I use hand signals to complete a thought or we change the subject if it's something we don't want her to hear.

Today the kids are at a movie with friends so we can chat freely.

Back to the  swelling... I called my doctor yesterday and got her partner, Dr. Needles, on the phone. Love that name for a doctor!  He said if I were in town, he would prescribe a diuretic, but since I'm in California where they can't monitor me, he told me to go to the ER if it gets worse. He also said to avoid salt and elevate my legs and arms frequently.  I sure didn't anticipate this problem and wish I had realized I was swelling when it began a few weeks ago. I thought I was just gaining more weight and that the heavy feelings in my limbs were fatigue caused by the chemo.

So, I have some limitations on this trip but I'm still glad to be here and can enjoy myself fully with a few modifications. We went to a movie last night and I got up and walked around a few times to keep my circulation going (a tip I read on Web MD).

Tomorrow we're going to the Getty Museum, and Tuesday we'll hit Malibu or Santa Monica so I can see the ocean before I leave. We've been somewhat trapped in Burbank this weekend because of "carma-geddon" (the closing of the 405 freeway) but luckily it reopens tomorrow. More updates soon!

Tuesday, September 25, 2012

No More Chemo!

My sixth and last chemotherapy treatment was on August 29th, and I couldn't be happier.  The two weeks following that treatment were no fun at all.  The side effects were the same but lasted much longer --  nausea, fatigue, body aches, and even pimples (or red bumps of some kind). And I had a new side effect of muscle fatigue where I felt at times that I couldn't lift my arms or move my legs. They felt like lead. That weakness continues today, but it's not as severe. I called the nurse and she said the cumulative effect of chemo can do that to you. Then I saw my doctor last week and she said I'm still anemic from the chemo and it will take awhile until my red blood cells build up again.  It could be 6 months to a year before my energy levels are back to normal.

So my next step is 6 weeks of radiation (5 days per week) and that should be a walk in the park, or so I hear.  I'm also continuing to receive an infusion of Herceptin once every 3 weeks through the end of April.  It's a non-chemo medication that was just introduced 5 years ago for people like me that are Her-2 positive. So I was back at Pratt Frat House on Wed, in the chemo suite. But it's much quicker than full chemo (about an hour) and the Herceptin has no side effects. 

To commemorate the end of chemo, I'm finally posting photos from the open house chemo days. Thanks to all who attended and for those who sent good wishes!  You all made it much more tolerable and even fun. I saw more friends this summer than I would have if I didn't have this cancer thing. I also appreciated all the visits to my home and the wonderful dinners you all brought. I have felt very loved and cared for during this time and feel grateful for all the support.

Now for the photos... starting with Chemo #2. I'll try to get to the other sessions soon. 

Let's start with the shoes. Note the clear acrylic heels and rhinestones, accented with teenage girl blue metallic toenails. Somehow this gave me the confidence I needed to strut into the infusion center. Or maybe it distracted me enough to face the day. Either way, it was fun!

The full effect -- fedora hat with wig.

Now to my guests, which included Peggy A., Cindy G., Jenny S., Claire R., Mary H., Kristin S., Liz C., Malina and Mila. It was quite a party!
Peggy A. got all dressed up too!

My dear friend Kristin, who I met in the 4th grade.

Monday, August 27, 2012

When a Lump is Just a Lump

Mark and I are just back from Mercy Breast Center where I had an ultrasound.  I felt a lump last week in the left breast (same one that had the lump in April) and naturally I was concerned. I called my doctor and she ordered an ultrasound with the option for a biopsy if the ultrasound looked suspicious.  But unfortunately the tests couldn't be scheduled until today, so my weekend wasn't exactly carefree. It's hard not to think of the frightening possibilities that a malignant tumor can bring.

The bottom line for me today:  the lump is just a lump.  The radiologist said it's probably breast tissue. It's not a cyst, it's not a tumor, just a lump.  And that's a good thing.  No need to do a biopsy.  "Women with dense breasts tend to have a lot of lumps," she said.  I didn't know I had dense breasts and I've never had a lump before, so now I need to get used to the idea of more lumps in the future.

I left the examination room feeling relieved and grateful. I saw Mark in the waiting room and gave him a "thumbs up" signal and a big smile. I told him what a relief it was and how worried I had been.  Turns out he wasn't really worried at all!  He said it just didn't make sense that a cancerous tumor could develop while I'm undergoing chemotherapy. We had discussed this last week and I agreed with his theory, but still feared the worst.  When it's your own body (and life) it's much more magnified.

So now I'm preparing mentally and organizationally for my final chemo, which is this Wednesday. As with the other five sessions, everyone is welcome to come to my "open house."  Time and place are the same; I'll send an email about it shortly.

Thanks so much for all your support!

Thursday, August 16, 2012

An Attempt at Poetry

Eight days ago I had my 5th of 6 chemo treatments, and it really knocked me down this time. I think I'm turning the corner now. Dehydration set in because drinking more than a sip at a time was making me feel sick. And being dehydrated makes you feel sick, too! It's a vicious circle. The nurse told me to start sucking on popsicles and drinking electrolytes so that's what I've been doing for the past 8 hours.  And I do feel better.

In the midst of all this discomfort I've had trouble sleeping. Last night at 4 a.m. I got out a notebook and wrote about something that's been bothering me -- how I look. I'm no poet so please bear with me.  Here goes...

The Face of Chemo

Eyes pale, receding, watery. Tired.
No longer blue, now gray.
Faded like a worn sofa no one will bother to re-cover.
Pleading “help me”
Asking “who are you?”

Lips muted, their outline blurred.
Thin, taut, unable to stretch enough to reveal a smile.
A straight line. 
A sore lurking in one corner.
“Don’t pick it, it will just get worse.”

Skin sallow. Sometimes, gray as a pre-dawn morning
With no hint of a rising sun.
Just dull.
With occasional flushes of red rash under the eye
Always the left eye.
And pimply marks, redder but smaller than a teenager’s.
Gone a few hours later.

Nostrils sore and swollen.
Dripping like a faucet one minute
And dry as Arizona dirt the next.

Tongue raw, rippled along the sides.
Tasting little.
Even dark chocolate has lost its allure.

Forehead etched with lines that look like
Utility wires strung across a meadow, marring the landscape.
The skin there is loose. Sagging.

Face rounded, puffy, bloated
Accented with a scarf that announces: “I’m a cancer patient.”
Well, I am after all.

O, vanity! O, poison in my veins!
Which of you is more destructive?