Some Things

A year ago when I was rediagnosed with breast cancer I was diagnosed with stage IV Metastatic breast cancer. which basically means my cancer had spread outside my chest area to other parts of my body. I kept this pretty private do to the girls and tried to make it as easy on them as possible only making some details known to them, to protect them in a way.

Lately my scans have been good I have had some set backs but I believed I was on the up swing. I had another round of scans last week and my scans reviled a shadow that my doctor wanted to check out a little closer. So I had a brain scan on Friday morning, by two o’clock my doctor called me with the results. The cancer has spread to my brain in one spot on the right side in the back of my head. I also had questionable spots throughout my brain.

So this has been really hard to soak in. It’s not an easy thing to process. Yes I have cancer, in my brain what will happen to me? So I start radiation to my head tomorrow, and they will treat me for two weeks everyday. Then we will work on the spot of cancer if it needs to be treated. they will stop my chemo until then, they don’t like to mix the two together.

So that is what we are facing right now, it’s hard and scary and I hate sharing it all with you, but you are all a big part of me and my recovery and my blog has pulled me through some really tough times. So I thought I could share this with all of you.

Thank you so much for all of your prayers and support

Sarah

Cross posted on Spruce Hill

I love ladybugs, by Judy

No, not for any international adoption reasons. For a very special, personal reason.

I was reminded of why I love ladybugs when I read Susan’s post, Signs of hope.

It takes me back to a day in the Fall of 2007 — September and October — when I was getting radiation treatment for my Inflammatory Breast Cancer. I had already had six months of once/week intensive chemotherapy and was still getting once/week of one kind of drug via chemotherapy. I had had a mastectomy in August 2007. I was then in an intense radiation treatment. All of these treatments were done in the hopes of saving my life from an aggressive and rare type of breast cancer, one that I unfortunately already had in Stage IV. I went through the year not knowing if I would live or die.

I was in the last part of my radiation. Radiation doesn’t have the side effects that chemo does, but it does have its own side effects, mainly of being tired and of getting very burned where you’re being radiated. I was burned, very burned. I’m fair skinned and burn easily in the sun. The radiation was burning me so badly that the area was getting severely burned. I was tired, scared about my future, and sad. I was basically just downright weary.

I had my radiation treatments in the afternoon, and one particular afternoon after treatment, I went to JC Penny on the spur of the moment. I parked my car, but I didn’t get out of it right away. I was so tired, so weary that I sighed as I put the car into gear and sat for a moment, building up my strength to go into the store.

Just then a ladybug flew through the window, and landed on my left chest, right where I was getting the radiation. And it stayed. I don’t know how long it stayed there, but longer than I would have anticipated. I was quiet and still. I watched when the ladybug flew away, and whispered a quiet “thank you.”

I felt a peace come over me after that. Oh, I’m not saying that the peace has stayed with me since then. But at that moment, that ladybug, in legend said to be lucky, helped bring me peace.

As this site says:

Nearly ALL cultures believe that a Ladybug is lucky.
Killing one is said to bring sadness and misfortune.

I don’t think I survived just because that ladybug landed on me. I think many things — God, good medicine, a great medical team — contributed to my survival.

But that day, that ladybug did bring me luck in the form of peace of mind.
__________________________________________________

Cross-posted to Just Enjoy Him.

Signs of hope

(by Susan, diagnosed with a recurrence of inflammatory or infiltrating breast cancer and locoregional metastasis in March 2010.)

Way back in 2003, I was deeply involved in animal rescue, fostering beagles and helping them become ready for new homes.  I did telephone interviews, homechecks, ran an online auction site, and participated on an email list for beagle owners.

One of the contributors to the I-BARC listserve was a man named Bruce, who lived alone with four beagles who he doted on.  One day, he lost his first dog, a beloved little beagle named Duncan.  Duncan’s death just about broke Bruce’s heart, and he talked about it online with his friends, who understood and provided support.  Bruce grieved deeply, talking about the loss of his little friend, not knowing how he would move past his grief.  It was my first brush with public grief, and I grieved along with him, as did we all, for we were learning that an internet listserve could be a very tight community.

Then, one day, the tone of his posts changed, and he told the list about the everyday magic of a bright yellow butterfly that visited him as he took the beagles out to the back yard.  The butterfly lingered longer than most, flitting around as if to be sure that Bruce noticed him, and staying longer than he should.  Bruce took this as a sign of hope, a message from his lost Duncan, and at that moment he knew that he would be okay.

As a scientist, I admit I scoffed.  Quietly.  But as a person with a heart, I was so relieved that no matter the source, Bruce had received comfort that day, and that he took the passing of the yellow butterfly as reassurance that Duncan was at peace, that he didn’t want Bruce to worry, and that Bruce would turn the corner and his heart would begin to heal.  I was amazed as over the next weeks it did.  Bruce’s tone became cheerier and cheerier, and he began to delight in the antics of his other beagles, coo over the list’s puppies, and celebrate adoptions with the rest of us.

I told you that to tell you this.

The week of my surgery, a pair of doves moved into our garage.  They laid eggs, tended the nest, and raised their babies until they were able to fly on their own.  We watched them from a distance, feeling comfort that our home was peaceful enough for doves to thrive in as lowly a place as the garage.  We parked in the driveway, tiptoed in and out of the house, and saved the “brrm-brrms” of the boys’ trucks for the sidewalk.  When the baby doves began to fly, they came around the house into the back yard, and they took practice flight after practice flight across the yard as my children and I sat on a blanket and watched them, amazed that they would do all this so near to us.

Not two days later, another mama dove moved into the nest in the garage.  She and her partner laid eggs, kept them warm, and hatched another pair of baby doves in that same nest.  They’ve been growing and growing, and the mama dove chirped to her babies from the driveway, coaxing them out of the nest, this weekend.  They took practice flights to the windowsill and back, finally moving out late Sunday afternoon.

On Monday morning, my husband and I went to Sloan-Kettering for a second opinion on our treatment.  We’ve been worrying over it for weeks.  We were gone all day and into the night.  I’ll tell you more about it in my next post, but I will tell you this.  When I left for radiation Tuesday morning (#19 of 35), two young bunnies emerged from a hole in our small pile of wood chips (where our giant maple used to be) in the front yard.  They hopped a few feet, looked at me, and sat down, as if to tell me that they were moving in.  And for reasons I can’t quite explain, I not only heard the message, I felt reassured.  I went to radiation surrounded by a sense of calm acceptance, and I daydreamed through the treatment.

I’ve been having a lot of trouble blogging this cancer, as I feel much more private this time.  I want to keep talking about it if it helps others, but I’m not interested in blogging for sympathy.  I need to be a big girl about this, and keep my mind on other projects in order to finish them up and to not get dragged down in the pit of questions (is my cancer metastatic? is it a recurrence? is it a new stage 3 cancer? why am i so lucky as to get three cancers in three years? what did i do to deserve this?).  You know this, as I haven’t been posting every day like I did last time, and I don’t always talk directly about the experience.   But today this was on my mind and my heart.

We don’t know what causes cancer like mine.  We don’t know why some cancers respond to treatment and some cancers don’t.  We don’t know a lot about it.  As always, I am hopeful for research to make breakthroughs that will help cure my disease and prevent others from developing inflammatory breast cancer.  I work to raise awareness of the symptoms, to encourage people to join the ACS Cancer Action Network and to sign up for studies through the National Institutes of Health or the Love/Avon Army of Women, and to raise money by supporting Relay for Life.  But some days, like today, it is enough for me to fight my cancer as the doctors tell me, to love on my children, and to take hope from everyday miracles like the constant company of small creatures.

Crossposted at Toddler Planet.

Burned, through and through.

(by Susan, diagnosed with a recurrence of inflammatory or infiltrating breast cancer and locoregional metastasis in March 2010.)

18 radiation treatments down, 17 to go.

I’ve committed to treating this part of treatment as no big deal, just part of my morning routine, but the truth is, it makes me tired. big time. I can still get out and about once a day, if I rest, but I am so tired afterwards.

My chest is turning red as well, slowly, so slowly, as if I were out in the sun on a summer day at the beach — but then I keep going back and doing it again! Every. Day.

I want to show you a picture of what it looks like inside the treatment room, and on my chest, but I’m sure I’d run into decency laws along the way, so I won’t. if you’re curious, though, here’s how it is for me.

Radiation treatments are always carefully planned and targeted so that the tumor is attacked but the lungs and heart are, mostly, spared. (You do have to watch that, though — a woman I volunteer with through the American Cancer Society’s Cancer Action Network told me yesterday about the damage to her heart she sustained during radiation, called pericarditis, that will trouble her forever.). Although some women have spot radiation, the area, in my case, is large. How large? Hmmm.

Imagine yourself standing in front of a full-length mirror. Yes, naked. Sorry about that. Put your finger on the little bone in the middle of your chest, between your ribs and under your sternum. Yep, the zyphoid process. (Don’t say I never taught you anything!). Move your hand one inch to the left. Now, take a tape measure and stretch it from this spot in the center of your chest under your breasts if you have ‘em, and stretch it around under your arm and to the back. Nine inches. Make a little mark here. Sure, with Sharpie. The radiation techs dot me with Sharpie every day, so it’s probably not a carcinogen.

Then go back to that funny little bone called the ziphoid process and stretch the measuring tape up towards the neck seven inches. You probably don’t want to mark this one with a Sharpie, as it would show like mine do above the neckline of my tops.

That’s the area I get radiated each day. 9 inches by seven inches, front and center, under the armpit, and around the back.

It burns clear through.

I know this, now, because my back is red and blistering, burned as badly as my front. I was surprised by this, as it didn’t happen last time, until my radiation oncologist said, “Well, Susan, the radiation is 6 to 10 million volts.”

Oh.

So my front and back are somewhat red, with blisters on the back, and deep red crinkly skin under my armpits, which are thoroughly blasted from four different angles.

It’s not that bad, but it is something.

Any questions?

Crossposted at Toddler Planet.

Struggling.

(by Susan, diagnosed with a recurrence of inflammatory or infiltrating breast cancer and locoregional metastasis in March/April 2010.)

I admit, I’m struggling.

I suppose it’s not uncommon for a person diagnosed with a third cancer in three years or a metastasis of a previous cancer to be anxious, quiet, and withdrawn.

I know it’s not uncommon for us to withdraw into ourselves or close family, to concentrate on the logistics of cancer diagnosis, the testing, the treatments, the side effects, the complications, the procedures, the planning appointments, the specialists, and the treatments to come. That’s normal, right?

But I’ve been surprised a bit at how this all has gone down. I am relying more on my nearest and dearest, setting up playdates nearly every day (even though many of them fall through because of illness, mine, theirs, or kids), cleaning the house obsessively (because God forbid it be out of order should someone drop by; they might suspect I’m struggling), spring cleaning and changing out the winter clothes for summer (labeling bins so that the change back for fall is easy for whoever does the chore, since I don’t know how sick I’ll be then), setting up summer activities to distract and engage the children, offering to watch others’ kids when possible (since I’ll need them to watch mine), joining a church again at last (I need to have a family of faith, since I was so disappointed by the brush-off that I got from my pastor last time I was in treatment, homebound, worried, and desperate to understand), paying the bills (and setting them up for automatic payment), calling contractors (to paint, to rewire, to fix the gutters, things I’ve put off for months or years), giving away outgrown toys and reorganizing the lego and playmobil sets that march across the playroom. Mundane stuff, right?

Isn’t this the time that I feel so blessed to have caught the cancer early enough for simple treatment? Before it went to my bones or brain?

Isn’t this the time that I spend all day snuggling my children? (Actually, I do. I spend all day snuggling and reading to my children. And then when they go to school or play independently I clean, so I can snuggle them more when they come back. This is not the way I used to do it. I used to work when they were at school, and teach them to clean with me (among many, many other things) when they were at home. But I can’t concentrate on work and do a good job right now. Luckily, the laundry doesn’t require much concentration. I have control over the laundry. I don’t have control over the cancer.)

Isn’t this the time that I reflect, here on the blog, and share these thoughts with you? It is, isn’t it? But why have I not been able to write real, intimate thoughts like this with you lately? Why am I so quiet? Why can’t I sit here and tell you, once again, like I pledged in 2007, to tell you what it’s really like to be a cancer patient and survivor? Am I ashamed to tell you that this time it’s not as easy? That some days, I don’t know how we’ll get through it? That I rage against the cancer in private? That I sink into my bed, seeking comfort? That I still have no answers for why this all is happening to me, and I search my past, wondering if it was something in the physics building at college or graduate school, wondering if it was the work I did in the clean room, marshalling van der waals forces to move nanoparticles from needle to needle, or those years with the mass spectrometer, where I was the only one to consistently wear my radiation monitor, even though it showed only low levels? That I wonder if the cancer was caused by the mercury spill that I worked next to for four days, because I didn’t know it was there and the technician didn’t want to be bothered with cleaning it up? That maybe if I had become a writer, or a microbiologist, or something on the other side of campus I wouldn’t be sick today? That then I feel ashamed for questioning, because surely all the research labs I worked in and was surrounded by followed standard radiation protocols and were safe for students and researchers? That I know that I can’t blame myself for contracting inflammatory breast cancer, Paget’s, and infiltrating breast cancer (if that’s even what it is), but yet, some days, I still do?

Isn’t this the time that I feel grateful?

I want to feel grateful. I want to feel that grace that came over me last time when I realized how close a call I had. I want to write words of hope and strength and coping here, so that others may see that the fight is not hopeless and dismal. I want to reach back to so many who have reached out, on this blog, on their own blogs, on twitter, and in person, dropping by or taking me out, helping me laugh again.

I love it. I love you. I do. And I appreciate it so much more than I have been able to say.

I haven’t been able to say it. Truthfully, I’m struggling. I’m not sleeping at night (at all, some nights, four in the last three weeks, and only a few hours most nights). I’m not eating, but I’ve gained 14 pounds since my medication was switched in February. I’ve found out only this week that two additional side effects of the aromasin are weight gain and the inability to lose weight. Nice. Thanks a lot, aromasin. No wonder my clothes don’t fit and I feel so crappy helping the kids scale the pirate ship or scrambling into the tunnel at the nature center.

I’m worried about my kids and how they’re coping. I’m helicopter parenting them at school, I know, but I want them to be in a place where there is love and friendship, not exclusion, pre-bullying, and fighting games. I’ve seen the effects of these things recently, and it makes me sick. I’m working so hard to provide them with supportive, positive playdates to counteract that time when they are essentially unsupervised on the playground at school. I’m looking into support for families now, before it gets worse, and I’m calling on resources from the American Cancer Society, The Wellness Community, CancerCare for Kids, and KidsKonnected to help me find out where to go and what to do to help my kids weather the stormy days as I adjust to the new treatment and recover from the surgery and its complications (the seroma is quite large, needing draining several times a week, and the draining has introduced an infection into the wound, which keeps me awake all night now with alternating hot flashes and chills, in two to ten minute cycles, for hours). I’m looking for other resources now, finally able to reach out and ask for help, and I want most of all help for my children, to help them feel like regular kids, and to give them a place where they can talk if they need to. I am looking. I don’t have a link for that. I want to find a place, though, and I am finally strong enough to reach out and ask. Have you seen one? Do you know a place on the East Coast where kids with cancer can relax and talk to each other or a professional about their fears?

I am realizing that I’m withdrawn, because I’m afraid. I make plans, but I’m not sure whether I’m planning to enjoy these things with my children, or providing them a place to go when I’m exhausted and in pain from the radiation that is to come. I tidy up the paperwork, the finances, the house, old contracts, loose ends, in hopes of regaining control over something concrete in this life. I realize now that it’s probably because the thing that I want to control the most — cancer — is not really up to me anymore. I have a treatment plan, with the endorsement of the oncology experts at Georgetown and Sloan-Kettering, and now I must trust it and move forward with hope and confidence.

I want to be strong. I want to accept this with grace. I want to just take it in stride and continue on with my blogs, my projects, my playdates, and my work. One day soon I will. But for now, I struggle. I admit it.

I admit it.

Crossposted on Toddler Planet.