Calling on the power of "lasagna"

It's been a rough week at the house. I picked D up from his truck, so excited. The five weeks he's been gone has been rough on both of us. I passed the time by taking care of the dogs, hanging out with friends, and taking massive doses of antibiotics. He passed the time by driving thousands of miles, thinking about how hard it is to be gone, and navigating a morass of new policies, procedures, and politics. I think I had it easier. 

Re-entry has been hard.  His story is his story, and maybe one day he will tell it to you, but for now, all I can say is I've been making tea, cooking favorite dishes, and feeling helpless in the wake of a tsunami of emotion that I didn't expect. 5 weeks is too long to be gone, and I can't imagine how my friend in a military family holds down the fort for months at a time.

Veggie Lasagna

A few years ago, one of my good friend's kids experienced a great, incomprehensible loss. The spouse had died, and my friend traveled thousands of miles to be with her adult child. In the face of the grief and the loss, my friend felt helpless, and she did the only thing that she knew to do. She made lasagna.

Layer by layer, she built the dish, and she told me, as she built it, it became something other than lasagna. She became something beyond herself. She made "the lasagna," the archetype of comfort, as did she became, "the mother."  She became the vessel for all the power of those two words. All the comfort, all the hugs, all the love, couldn't fix that loss. The only thing that she could do was be with her child.

Our house is having a "lasagna moment." Instead of lasagna, its early thanksgiving dishes (mushroom gravy, roasted tofu, stuffing, and mashed potatoes), apple pancakes, spaghetti and vegan sausages, tofu scramble, home fries, pineapple upside down cake, mushroom Cornish pasties, and chocolate cupcakes with coconut whip cream.

I can't make this better. I can't make this easier. I can only write love letters with the tools I have left. I can only be there as things get scarier and scarier.

D. This is the bottom, darling. There's no place to go, but up. I love you, my sweet, and I'll love you forever.

Source

I am fierce. I am brave. I am kind. I can do this.

It's been a long week. D isn't home yet, and I and the pups miss him something fierce. Honey heard a truck that sounded like D's old bronco, and she shot off the bed with no notice of her creaking joints to window whining in her "your home" voice.

I finished all my antibiotics for my finger infection last Saturday. The offending finger was almost flesh colored (instead of fire engine red), and the bone numbing tiredness that was probably my immune system's valiant attempt to fight off the little buggers had waned a good bit. Saturday and Sunday passed pleasantly. Pumpkins were carved, seeds were roasted, and the wee ninja (who isn't so wee anymore) helped me make pasta. There was some concern on Sunday as the red began creeping back around the mostly healed wound.

So Monday, I was ordered, guided, shoved towards the urgent care clinic again. This time I called ahead. My heart raced (121 beats a minute) and my blood pressure soared (144/90). (They haven't been this high at a doctor's visit in years.) My favorite doctor wasn't there. Instead, a hulking PA looked at my finger.

Interior: Generic strip mall urgent care clinic. Sterile room, flickering florescent lights overhead.

PA: Why do you think it's infected?
A: It was last week, and the red is coming back. It's puffy.

PA: It doesn't look infected.
A: I have to keep a careful eye on it. It was bound to happen.(said in a joking tone.)

PA: Tell me about this lymph-ditis thingy.
A: (internal dialogue: Ohhhhhhhhhhhhh dear lord. He can't pronounce my disorder and called it a thingy...) I have no lymphnodes under my arm or in my groin. My body doesn't pump lymph the way it should, and my right arm is prone to serious infections. (ID: Why am I telling the PA this, instead of demanding to see another doc?)

PA: Pokes my wound. Does it hurt?
A: I can't feel my fingers.

PA: Pokes my wound. Does it hurt?
A: I can't feel my fingers.

PA: Pokes my wound. Does it hurt?
A: I can't feel my fingers.

PA: Why can't you feel your fingers?
A: Side effect from chemo. (ID: did you read my chart?)

COLITIS!?!!?!

Let's just say I could keep writing, and it didn't go well. I left with a diagnosis of a boil (not what it was the week before), and I was told to watch it. Back at the office, the ladies convinced me to get a second opinion, and I duly consulted another doctor who prescribed a heavy duty topical. By Monday night, the exhaustion crept back. By Tuesday, the red started sneaking around the edge of my finger, and by Tuesday evening, I was waiting at Albertson's, sleepily staring at beauty products under the fluorescent light ready to pick up another batch of pills with a slightly scary side effect.

It's so hard when I am sitting in an exam room with an unhelpful professional attempting to communicate my needs and obviously failing. It takes two to tango, and I know I can get prickly, but sometimes, I just need to feel heard.

During my first run with the big C, I, bald and bloated, stood at the meat counter with my number trying to get lunch meat. A lady, I think it was the lady across the counter smiled at me, and she asked, "How're ya feeling?" All I could get out was, "sick and tired." She bit her lip, and she said, "I know, honey, my dad has cancer. It's hard, but I know you can do it." I smiled at her and said, "Thank you. Good luck to your dad."

If she hadn't been fiercely determined to make my day better, bravely outspoken, and stunningly kind, I would never had made that connection. I would never had heard those words, and I needed them.  A side note: she also reminded me that as a survivor, to family members and other survivors, I am often a symbol of hope, whether I like it or not, and I had better act like one. It's a role that I am sometimes asked to play, and it's one I will take on.

Anyways, during my second run in with the big C, I would chant to myself, "Be fierce. Be Brave. Be Kind. You can do this." I'd chant it as I sat waiting for tests, as I submitted to the chemo chair, as I walked into the radiation room, as I fought to stay mobile and well, etc. I chanted pretty anytime I was doing something that felt I couldn't do.

This week in that bright exam room with that PA who hadn't read my chart or treated a patient with lymphedema before, I chanted it again.

Be fierce. Be Brave. Be Kind. It reminds me that I can get my needs met without being angry, cruel, or detached. I can get it done my way, all sportsman like.

"God, please help mommy's friend not be mad."

When I was diagnosed the second time, I had taken a job in Southern Oregon. It was closer to D's sister who was having a hard time. It looked like fascinating work, and I saw lots of ways I could assist people with developmental disabilities and grow my own skills. I started bleeding heavily three months after I started.

I would do trainings and have to change my tampon every hour. The cramps would start to pulsate, and I would imagine myself floating away from my body, disconnecting my brain from my physical presence to make it through the day. The turning point came when I bled through a night time pad, a towel, a sheet, and a mattress pad in a hotel. I left the cleaning ladies a 20 dollar tip.

Eventually, this bleeding led to my diagnosis with endometrial cancer. My boss and my co-workers took amazing care of me. My work was adjusted, and I was given development work that I could set my own pace at. My friend's little girls would pray for me every night, and Rainbow, the youngest would pray, "God, please help Mommy's friend not be mad." Rainbow, at four, would get mad and sad confused, fairly frequently.

Of all the prayers she could have said, she said the one I needed the most. I was so angry. I was angry at my rotten luck. I was angry at the medication that set me up for a second cancer. I was angry for not stopping treatment and having a baby when I had a chance. I was angry that I couldn't have that "20s" experience. I was angry that I kept having to ask for help and having to pay for medical bills. I was so mad for a little while.

Every time I'd feel that stab of pain that shifted quickly into anger, I'd chant, "God, please help me not be mad. Please help me see this anger as grief." I don't know about God. I'm not an atheist. I'm a cultural Christian. I know in those dark seconds, I called for something beyond me. I needed a strength that I didn't have.

Now, I am struggling again. I am having to leave a job I really do love, and I am having to leave it, because I physically can't do all that my work requires. I know this, and I've made plans. I'm going to be Ducky's nanny for a while. I'm taking the time to be her aunt,  a sister, a daughter, a god mother, and a patient. 

I'm running to something, instead of just leaving something. This helps.

I have experienced both my cancer diagnoses as "little deaths." The me who I would become died on both of those days, and the me who I became was born. The grief I felt on those "little deaths" cannot be explained in words. Looking back though, I feel an odd sense of welcome and accomplishment. The me who I was will never be, but those days are the birthdays of the new me.

This moment is one of those "little deaths." It is a "little death" that I at least knew was coming. The me I was to become is gone. The me I will become is unknown, and this is OK. Right now, I have been holding on so long, buffeted by the wind, that my arms are tired. I am letting go, sailing with the wind, and knowing that all will be well.

Identity as freedom...and all about my middle finger

That's one cute baby, and to a trained eye, one puffy arm.
The baby is the important part :)

Last Thursday or Wednesday, it's all blurring together, I accidentally slammed my middle finger in my bathroom door. It hurt. It bled. I cleaned it out, and I treated it with antibiotic ointment. The next day, I woke to a creeping swelling mass of infection. Dutifully, I traced it with pen, and I watched it. 

Lymphedema makes it more likely that small little scratches can turn into large system-wide infections. These infections can end up with the patient (me) in the hospital for a bug bite, scratch, paper cut, and other minor annoying booboos and scrapes. Up unto this point, the potential infection has never crossed the blue traced line that I have been instructed to make. 

This time, though, the infection pushed the pen line up, and the red fingers of inflammation started stretching towards my knuckles. By the time that happened, it was Monday. This apparently confused me enough that I couldn't remember what I was supposed to do. Go to the doctor? Go to the ER? What had my OTs/PTs said?? No WebMD for me, I've learned my lesson. Luckily, I had an OT appointment in the afternoon. She looked at it, and said "you really need to go to the doctor." 

D is far away. My finger is infected, and I have to GO TO THE DOCTOR. "Who will watch the dogs if I have to go into the hospital?" A hug and some reassuring words later, I sat in urgent care waiting for the verdict. No hospital, and as my favorite urgent care doctor said, "you'll live." 

Five days of antibiotics later, my finger is much less red and finally less swollen. I'm tuckered though. I made it through the things I had to do at work, with gracious help from my coworkers, and I came home early today. 

I rested while my sweet mother in law started putting my garden to bed for winter. Before she arrived, I was poking around on Facebook, and I stumbled on NPR's Ted Radio hour. The show was all about identity, and I had one of those moments of clarity. 

This guy had spent years writing this book about parents of kids with different identities. He, Andrew Solomon, was fascinated by children born to parents who are different than the child like a deaf child born to hearing parents or a child with down syndrome born to parents without extra chromosomes. So he's talking along and then he says something that resonated into my bones:

"As long as you experience your condition as an illness, it is a prison, and once you experience it as an identity, it's the source of your freedom." 

Wow...I mean wow. What does this mean for me? What is my identity as a cancer survivor? What is my identify as a person with lymphedema? What does this mean? I know it means something important.  Part of my grief is that I didn't choose this identity. I wasn't born with it. There is a disconnect between the me that I was and the me that I am. 

I've fallen into this trap where I am defined by what I am not and what I cannot do. I am the person who stares at the mountains and longs to go into them knowing full well I shouldn't. I am the person who can't feel the heat of the water or the metal car. I am the person who can't feel my feet. 

Is that the real Amanda? Guns blazing with stars?

Identity is not defined by what a person cannot do. It is defined by what a person can do. I spend my professional life teaching people this. Why is it so hard to see what I am? 

When I really think about who I am, I often relegate cancer survivor, lymphedema patient far away from the rest of me. It's like I've wrapped that part of my identity up and placed it in the closet under the stairs to my soul. I've separated it from me artificially in some vain attempt to control what I have no hope of ever controlling. 

So what does it mean to identify as a survivor and a person with a chronic medical condition? I don't know. It's a perspective that is all new to me, and it's something that I need to find out.

The good, the bad, and the pink

By DebMomof3
Licensed under creative commons

Pink month is here. Yeah.  It's kind of hip right now to hate on the pink "awareness" month. Not that it's not hard to hate on the pink. There's lots of really good reasons to do so.

A lot people are touched by breast cancer. 1 in 8 women are diagnosed during their lifetime. So chances are good, consumers know someone who was diagnosed. They've experienced the overwhelming helplessness of watching someone struggle with something that they can do nothing about. They are decent human beings in need of a way to do something, anything to help out. This makes them, read us, easy marks.


Companies, not all, but some put pink ribbons on products for this month, and they benefit from the pink bump. This benefit may not translate as people expect to nonprofits that actually help people facing breast cancer. This practice has a name: "pink washing." The product that company is selling may actually be part of a constellation of things we know cause cancer. "Pink washing" preys on the unsuspecting patron trying to do right.

If the product actually does donate money, the unwary consumer maybe surprised to find out that the nonprofit that recieved the donation may not donate much onto the cause. Several of them donate 10-15 cents on the dollar onto research etc. Again, some of these companies and non profits set a benevolent trap that sees them profit instead of the people the consumers think they are helping.

The hatred of pink kind of peaked when Komen tried to stop funding Planned Parenthood in what looked like an all out assault on women's reproductive rights.  In 2011, the holiday of pink intruded into February, and I became obsessed with it. I couldn't sleep. Facebook friends posted diatribes against planned parenthood, Komen, and pink, and I got lost in the middle.

When times are tough and I feel Isolation's claws sinking into my chest, I look around me, at the store, on the road, in restaurants, in elevators. Someone is always wearing a ribbon. Someone is always there reminding me that I am not alone. I can't hate pink entirely, because, in that moment, all that pink wraps me up in a giant hug.

That said, breast cancer is not photo shopped models sporting pink products. It's not a good deal on yogurt, wine, soda, etc. It's not free meat. It's not cheap plastic pink pompoms, car magnets, guns, porta-potties, mops, etc. It's ugly internal and external scars. It's crippling side effects. It's painful reminders of lost loved ones, potential, and dreams.

So when you see the pink this month, remember pink responsibly. Do your research. Hug a survivor. Check yourself. Consider giving to different organizations instead of the impulse buy section at the supermarket.

Some of my favorites that do great work:

• Young Survival Coalition
• The Pink Daisy Project
• Army of Women

Some of my favorite awareness campaigns. These guys may or may not make money, but they do raise awareness.

• The scar project
• Feel your boobies

If you are interested in more on pink washing.

• Think before you pink
• Pink washing for breast cancer

Throwback: Pink Ribbons, Komen, Planned Parenthood...nothing is ever really what it seems...

The postings on this site are my own and do not necessarily represent the views of the

American Cancer Society.

When I was 16, I lifeguarded.  I used a lot of towels between swim lessons, work outs, and dips in the cool water on 107 degree days.  As the summer wore on, my towels wore out. Eventually I ended up at some giant housewares boxed store looking for a towel.

I didn’t have a lot of money. I needed a cheap, durable towel. A thick one, thick enough to take a beating and repeated dryings.  I didn’t find one in the towel section, but as I browsed the store, I saw an end cap with pink ribbon towels. It was 10 bucks for a nice, huge pink towel with bright pink ribbons; all proceeds going to the Breast Cancer Research Foundation. This was the towel I bought. It came with a shower card that I hung in my shower.

Every day, the rest of that summer, I wrapped myself in this pink towel. Every day, I stared at the shower card. Every day, I thought about my breasts, and I got to know them.  No self exams really, I just felt them, and I knew them... They were a part of my geography. Something I didn’t take for granted.

Six years later, I was off at school, nearly insurance-less.  I lay in bed and I felt my breasts as I had been doing for years, my pink towel hanging on my door.  I felt a lump. It stuck out from the map of my breast: a boulder in a smooth road. I waited a month. It grew, and it grew. I could feel it shifting beneath my fingers.  Eventually, my husband made me an appointment at the school health clinic. I went in and the nurse practitioner spent ten minutes telling me it was nothing, and her face spent 5 seconds telling me it was something.

I was 21 when I was diagnosed with breast cancer. I knew to check myself because of the towel, the card, and a million of other things people take for granted. Herceptin, a drug targeted to a protein on my tumor cells, had just come out. It increased the chances of my survival and continued health dramatically.  I took tamoxifen for five years.  These were the drugs weren’t around at the beginning of breast cancer. They took research and funding and a pink ribbon. A lot of women died while they were being researched. I can’t ever forget them. These women held on for the hope that the next treatment would be the one to keep them here a little longer.

So, friends, when you disparage the ribbon and the research and the month, I just ask you this. Think of that 16 year old kid, that 21 year old kid who would have been another young survivor statistic (diagnosed too late, under or un-insured). Remember that we don’t have a cure for all breast cancers yet. Remember the human face of this disease. Remember that all that research is valuable, and remember that the pink ribbon saved at least one life.

Komen, I also have something to say to you. If I hadn’t been at school, I would have been in a Planned Parenthood for that exam.  As you know, mammograms don’t accurately detect breast cancer in women under 40. Women under 40 (like poor women, black women, and Hispanic women)are more likely to be uninsured or underinsured. Women under 40 (like poor women, black women, and Hispanic women) are more likely to be diagnosed at a later stage. Women under 40 (like poor women, black women, and Hispanic women) are more likely to die from the disease. That exam by the NP was all I had standing between me and a statistic. It saved my life. Planned Parenthood doctors using the same exam save lives every day in a population drastically under served by the rest of the medical community.

I’m the person your grand statistics on the validity of care doesn’t show. I’m part of the invisible minority of breast cancer. Your recent decision looks suspicious, and I cannot trust you. You helped me when I was first diagnosed, you helped fund research that kept me alive a little longer, but your lack of attention to me and those like me lost much my support years ago.  This most recent decision of yours was its death blow. Your explanations hollow, forced, and ununited. So I am left, as I have been much of the way, by myself facing an uncertain future of side effects and a second cancer, alone.

February 3, 2011, 12:24 AM.