And Then There are Other Days

Like yesterday. Yesterday was one of those days.  I found out that because I have metastatic breast cancer, I can no longer be an organ donor. I have been an organ donor since the day I first got my drivers license. I was proud of this fact.  I didn't plan on handing over my organs, but if I died in a fiery accident, I knew my body would do some good for someone else.  But no more.  Yesterday, I contacted the DC Department of Motor Vehicle and officially removed myself from the organ donor list.

That was hard.  It was hard because it meant I was sick. It was hard because it had a finality. It was just plain hard.

But did I leave that moment alone? No. I had to, on top of my physical exhaustion and difficult emotions, look up survival statistics for metastatic breast cancer. They're not good.  My own oncologist told me not to look these up. The nurse practitioner told me not to look these up, explaining that the numbers have changed greatly even just recently and that no one is a statistic. But I had to go and look them up. Silly me.

So that set me off on a really horrible, horribly rotten, I'm gonna die kind of day.

After a nap and a visit from my dear friend Ingrid, I finally started feeling better (it's incredible what a hug can do). But before that, I had the word hospice in my mind (only once) and actually made a stupid comment about how I wouldn't be around to have to empty the dishwasher anymore (this was related to me commenting on how much I hated emptying the dishwasher, so maybe in a way this was a positive thought). I was convinced that my family thought I was going to die and that everyone around me thought I was going to die.  Hey, the pity party comes with the territory folks.  At least once a week, on my most exhausted day, I am likely to have one.

But then this is what happened next.  I got angry.  I got angry at the co-workers who pretend nothing is wrong, yet stare at my wig (I wore it for the first time yesterday). I got angry at the few folks who haven't called me most likely because they have too much to deal with, but still it pisses me off. I pissed and moaned with my friend Mary Rose over the phone and the anger helped me to start feeling better.   Hey, I don't care if, according to Ms. Kubler-Ross, anger is only one step past denial and so not close to acceptance. It felt good to get pissed.  I'm frankly pissed about getting breast cancer and being so special it swept out the door, past my non-enlarged lymph nodes, and straight into my liver (poor Beatrice).

And then I picked up Bernie Siegel's book Love, Medicine and Miracles for another read.  Siegel refers to the group of sick people who are waiting for the long-term effects and inevitable death as the Bleak Brigade.  I sure as heck don't want to be a part of the Bleak Brigade. In fact, I am not a member of the Bleak Brigade.  I am what he refers to as an Exceptional Patient, the one who insists on being part of the treatment and cure and is seen as downright difficult.  Or what I call the Uppity Cancer Patient.

I am downright uppity.  I will not agree to having treatment or tests put off (I will schedule them myself, if I need to, damnit). I will not immediately say yes to a treatment until I understand and agree with that treatment. I will not let a nurse practitioner send me off to a dermatologist two weeks after the steroid-induced acne has engulfed my face.  This would be yet another appointment I do not have energy for and it's just acne, dangit. Call something in for me.  And if you won't do that, I'll call my internist who will call it in for me. And then I'll tell you what I did and why and illustrate to you why you do not exhaust a chemo patient for plain old acne.

Because I am difficult. I am uppity. And I am going to live. Damnit.

Gratitude. It does the body good.

I have never felt so grateful in my life. And happy. I'm happy.  I'm learning how to accept help from people and that help makes me feel loved and cared for.  And who doesn't want to feel loved and cared for? That's really the goal we all have.

The question isn't, "Hey, why did you show up late?"

It's, "If you loved me, you'd show up when you said you would." The fear is not being loved.

So now I have the answer. I am loved. I am cared for. I am happy. And I am grateful. Very, very grateful. People want to help me. They make me hats for my bald head. They bring me food. They offer to pick up dog food for me.  They come with me to chemo and stay with me after.

Previously I was so fiercely independent I never wanted to ask for help.  I'd muscle my AC units into the windows each Spring by myself.  I wouldn't call for help even if I was so sick I was afraid I'd fall over.  I worried that if people didn't call me that meant they didn't like me.  All of that was wasted time.  It's too bad it took Stage IV breast cancer for me to learn how to take help and let people care for me.  But, hey, better late than never.

The lesson? Ask for help when you need it. Take that help. Express gratitude. And enjoy the love.  It rocks.

Hallelujah! Hallelujah!

Today is week number three of chemo tripping (nine more to go).  Today's Chemo Buddy is my nephew Ben, who flew into town for work, and stayed several days to do Chemo Tripping and Chemo Watch (Chemo Watch duties are described as making sure that Susi doesn't drown in her own spittle).

Like last week, I asked to see my liver enzyme readings.  Remember Alkaline Phosphate S, AST (SGOT), and ALT (SGPt)?

Where we last left off in our story, all three of the readings dropped by 10 to 30 percent after just one chemo treatment.  Here's this week's numbers, after chemo number two:

Alkaline Phosphatase, S    244 (started at 286 pre-chemo, high normal 150, 15% drop from start)
AST (SGOT)                    50 (started at 150, high normal is 40, 33% drop from start)
ALT (SGPT)                     71 (started at 124, high normal is 40, 43% drop from start)

So kids, looks like I'm here to stay and Beatrice the liver keeps feeling better and better. Go Bea!

Here's my list of plans for the future:

• Re-do my basement and second floor bathroom;
• Get my nose pierced;
• Have my leg tattoo purtified and then have another tattoo put on my lower right back;
• Adopt a child through the foster care system in DC (I've always, always wanted children but was afraid to go forward because I'm single. Screw that. I'm adopting.).

You see it. Survivor carved into the hair.

In other news, I had my hair buzz cut last night (just in time, since the hair began to fall out wholesale last night).  The cut was done at Diego's Hair Salon, a barber shop in Dupont Circle (I'm not paying women salon prices for a buzz cut).  The young Camillo did a wonderful job, especially with the carving of the word "survivor" into the hair on the back of my head. 

Now I'm officially in wig and head wrap world.  I have a few knit caps being made by friends (Ingrid is an incredible knitter, and I hear Helen, the wonder knitter, is knitting one too).  But in addition to getting to play with wigs and head wraps,  I also have had a truly fun experience getting a buzz cut and stencil, with pictures to prove it (thank you, Jo Ann).  The cut looked pretty good for a buzz cut on a chick, and I found out that my real hair color is light brown shot through with grey (my natural hair color has not seen the light of day since I was 24).  My hair dream? That the hair will grow back a different color like dark brown (it's not uncommon apparently).

The young Camillo at work.

Meanwhile, enjoy the pictures.

And this week's shout outs go to:

• Deborah and Carole for the incredible quiche and brownies they left on my front porch.  Gourmet food left at the door;
• Connie and Emma for incroyable soup delivered to me at church. Gourmand with God;
• Jo Ann for coming with me for the survivor hair cut and to take pictures;
• Ben for taking time out of his upwardly mobile professional life to shuffle his poor, old decrepit aunt to chemo and to watch over her after. By the way, he is only 17 years younger than I am;
• Jessica, the two time breast cancer survivor who keeps me going with regular venting phone calls. And;
• Cathleen from Ohio, another breast cancer liver mets survivor matched up with me through Y-ME Breast Cancer Support, who is helping me believe I can survive this and live.

Catching Breast Cancer

Since I've come out with my diagnosis of breast cancer to folks, I've received an incredible number of supportive comments and some interesting ones.

The most interesting? How did I get cancer.

My answer. "I don't know. My boobs never smoked."  I added later, "Maybe they hung out with bad company."

I did wonder though, was there something I did. Was it my heavy drinking (thank you Alcoholics Anonymous for helping with that)? Was it the fact that I'm considered obese (I prefer to say pleasantly plump)? Was it the fact that I've never had children?

Bingo. That's part of it.  I found great answers from a book called Breast Cancer: Real Questions, Real Answers by David Chan, MD from UCLA, who has been treating breast cancer for 40 years.  By the way, I would recommend this book to anyone who has been diagnosed with breast cancer.  The book takes you through the process and all the questions in a plain, readable and incredibly helpful way.

Here's the scoop:

• The industrialized countries have the highest incidence of breast cancer in the world;
• Research has shown that this is due to the fact that young 'uns in these countries get higher calorie, higher nutrition diets so young girls enter puberty sooner;
• Also women in industrialized countries put off having children longer and tend not to breast feed their babies as much or for as long;
• This means that the breast tissue of women in these countries are more exposed to estrogen and progesterone, key growers of breast cancer;
• Obesity and drinking can be a factor (the fat in women's bodies produces more of those hormones), but compared to the where you live question, these factors are fairly minor;
• Finally, Dr. Chan says it ain't your fault. Just because you were born in an industrialized country automatically adds you to the group of more likely to develop breast cancer;
• Oh, and really finally, the United States has the most aggressive approach and research in breast cancer so has the lowest mortality rate for the disease in the world.

So here is my tip list:

• Don't add any extra hormones to your system if you can help it. The newer versions of the birth control pill are much better about this, but otherwise, keep that estrogen and progesterone toward your already natural levels if you can. I.E., when it comes to birthing babies, have 'em naturally without pumping extra hormones into your body or adopt (there is clear evidence that fertility hormones increase your odds of developing breast cancer). Breast cancer ain't worth it;
• When you do have babies, breast feed them and breast feed them for at least a year (studies show that when women do this, they cut their chances of breast cancer by 50%);
• And finally, go get those mammograms and report any damn bump you feel on the self exam.  Push about it.  It's your life.

And another note about me (as a friend would say, it's all about me).  My cancer is not fed by estrogen or progesterone (they test this stuff, really).  It is HER2+ and aggressive as all get out.  The good thing?  I can still eat soy, which mimics estrogen.  The bad thing? This shit is aggressive.  But in the end, we're back to it's not my fault.

Also published on CureToday

The Liver Speaks

The chemo Tommy gun of cancer killing love.

She speaks softly, but she speaks. Today, during my second chemo, I asked to look at my liver levels and compare them to the readings prior to chemo number one.  There's been improvement.

Alkaline Phosphate, S has dropped from 286 to 257 (down by 19, normal high is 150), AST (SGOT) has dropped from 150 to 92 (down by 58, normal high is 40), and ALT (SGPT) has dropped from 124 to 85 (down by 39, normal high is 40).

One week of Taxol and Herceptin and my liver readings are improving.  Improving.  That's a bit of hope to grab on to and I'm grabbing it with everything I've got.

When I thought I was having gallbladder problems this summer (turned out that was the breast cancer in the liver), I named my gallbladder so that I could name the thing that was hurting me. My gallbladder is named Hilda and I thought she was giving me such pain. I would say Hilda is giving me hell. Turns out it was the liver giving me such hell.

What shall I name her?  Hilary, Ulla, Margeurite?  I think something soft yet kind is in order.  My liver is my friend. I want her to feel better.  Beatrice. I'll name her Beatrice, Bea for short. This was my great aunt's name on my father's side. She was a woman I greatly admired for her kindness, independence, and chutzpah to live life on her terms and without a husband. Beatrice was strong, kind and giving, qualities I am hoping to which my liver will return.

So Beatrice is feeling better and emotionally so am I.  Thank God.

Building Hope One Plan at a Time

Last night was a bad night.  It's one thing to have breast cancer that is in the breast, hasn't broken out, can be shrunk, and then cut way.

It's another to have breast cancer that has run out the door, through a very tiny crack, and f'ed up your liver beyond some comprehension.

I am at that between time when we've started treatment and we wait. We wait to see if the Taxol shrinks the spots of my cancer in my breast and liver. We wait to see if the Herceptin keeps it all in check.  We wait to see if my flipping liver functions and tumor marker levels improve.  That's a whole lot of waiting between start and "you're gonna live."

So last night was a bad night. A night where I didn't have much to do but sleep and instead hugged the pit bull crying in fear and loss for my sister and mom (I so wish they were here). A night where I laid alone and thought, this is not good.

So I got up and made a phone call. I called my friend Lisa and sobbed. Then I called Y-ME Breast Cancer Support's 24 hour helpline and asked if they'd match me up to someone living with a similar diagnosis.  And I contacted Living Beyond Breast Cancer and asked for the same thing. To top it off I read a brochure called I Still Buy Green Bananas from the Breast Cancer Network of Strength, making sure to mark out the areas of the brochure that talk about end of life planning and palliative care (I don't even want to think about getting to that point, although in my compulsive way, I already have end of life measures fully in place).

Today I made more plans.  Next week will be my buzz cut with a barber shop not far from here, the word Survivor stenciled into the back of my hair.

March will be meeting with a tattoo artist to work on the tattoo I got earlier this month in support of my chemo.  I love the message "All is Well With My Soul" but thought the end product was less feminine than I was seeking (I sometimes whistle "Popeye, the sailor man" when I catch a glance of the tattoo).  The tattoo work will happen after chemo is done.

And in that vein, I will be visiting a piercing studio to have my nose pierced (small stones are purtiest).  I've for years wanted to do this but work made me hesitate.  Now I can point at my pierced nose and say, "I have cancer. I wanted it. Deal with it."

Living this close to the bone of life has certainly made me more aware of the things I've denied myself over the years, some big, some small.  But the one great affect is I care even less what people think of me.  If I could have passed that to myself at a younger age, I think life overall would have been a little less angst filled and a lot less annoying.

So there you go. Building hope one little plan at a time.  Shoot.  What's the worst that could happen? I could die.  But hopefully, I'll have gotten the damn nose pierced before that happens.

The News - For Now

After all the shit hitting the fan of the last several weeks, I finally was able to meet with my Medical Oncologist, Dr. Rebecca Kaltman.  Here's the news so far:

• 12 treatments of Taxol and Herceptin once a week and then re-scan;
• Tumor marker and blood level baselines taken to check progress as we go (if the liver readings get better, things will be seen as progressing positively);
• Once the scan is done, re-assess what to do next. My goal is to get these time bombs off my chest but the doc says we can't delay needed treatment for surgery.  Okay, she's got me there.

So it's kind of a wait and see.  Interestingly, in spite of my exhaustion and anxiety, I've come to an acceptance of this.  I'm scared and don't know if the drugs will kick this cancer (I am hopeful though). Yet at the same time, I'm willing to accept what happens. I'm not saying I'll be giving up, I'm just not going to throw my mind out trying to figure this out. It'll be Que Sera, Sera, except without Doris Day singing in the background.

I'm still exhausted (last night was about 12 hours worth of sleep once the doc finally realized I was still taking the steroid dose that applied to the previous chemo regimen and reduced that dose)..  I'm hoping once I'm able to sleep well again, things will even out a little bit. Meanwhile, the front of my stove, fridge, and dishwasher are lickety split clean. 

Anyone coming to my house, please at least take a look at those fine appliances. This may be the cleanest they will be in a long time, because after this I'm going to sleep.

Relax, Baby, Relax

The day after chemo I went shopping. Not a drop in and pick something up quick shopping, but shopping.  I call it chemo shopping.  I needed small packets of tissue to carry with me when my nose begins to drip due to loss of hair nose (really), small bottles of hand sanitizer, several soft toothbrushes so I can change out often, that kind of thing. There is really a chemo shopping list and you can find it on www.breastcancer.org.

But frankly, I had no business being out shopping.  I needed to go home and go to bed.  I was exhausted, muscle sore, running hot and cold, thirsty beyond belief, and at points stumbling and staring. But, no. I had to shop, get my stuff done.  Sometimes I could just slap myself.

And this was after dropping my friend Jill off at her house in south Alexandria (God bless you, Jill, for coming over), and then high tailing it out to Falls Church for my I'm gonna get their do or die AA meeting.  Once I finally got to the AA meeting, I simply sat next to my friend Mary Rose and cried, I was so exhausted.

AA meetings fine.  Shopping no.

I need to learn how to let people help me.  Friends and family have been at my house for 3 days now (God blesses again), but I can't seem to just relax and let them help. Instead I host.  "Do you want some tea," I murmur through my stumbling exhaustion.  I want them to be comfortable, I want them to be happy, and I apparently want me dead.

So relax, baby, relax.  Learn to lay on the couch and let people get their own tea and me one too. And learn how to online grocery shop and let kind men drop bags of food in the living room on dark, early mornings, followed by a nice tip and a thank you.

Cancer and a go get 'em, get yer shopping done, keep 'em comfortable approach to life don't really mix.

First Day of Chemo

Tiring, a hopeful start, painful when back spasms slammed in once the Taxol started (an infusion of benadryl and a slow restart helped diminsh that).

My beautiful friend Lisa kindly sat in a chair across from me and held my hand through the spasms. Yes, I cried. I insisted on dancing with the IV pole every time I had to roll it to the restroom (chemo makes me thirsty). Lisa will be loaning me her fuchsia feather boa so next week I can dress the pole properly.

I continue to read about people who survive and live with metastic breast cancer and that helps to refill the coffers of hope. I need to find more live people like this to talk to.

Apparently my sobbing incident in the chemo lounge last week and the way in which I was informed of the spread of my cancer was the subject of the group's last staff meeting. Good. The offending nurse practictioner was there when the spasms hit and showed incredible kindness toward me. My anger and hurt with her ebbed. I don't have time to hate people.

Overall I'm still scared but grateful that I have good treatment options, a growing comfort with asking for and accepting help, fabulous friends and family to call on, and a burgeoning understanding that no matter what happens now and in the future, that l have had a life well lived.

Oh, and I still won't put up with bullshit. That part hasn't changed.

My Gratitude List

I am grateful to live in Washington, DC that has some of the best doctors in the nation and to have one official Oncologist, Dr. Kaltman, and one unofficial to me Oncologist, Nico from the National Cancer Institute, reviewing my tests and spurring me toward hope.

I am grateful that there is now a drug call Herceptin to treat the Her2+ cancer in my breast and now on my liver. Six years ago people like me were simply sent home to die.

I am grateful for family and friends who are surrounding me, taking me to appointments, feeding me, just showing up or calling. I may miss some but here are some of my beloved angels:

-Lisa my biopsy and chemo buddy extraordinaire;
-Ann who calls, finds wig resources, sends helpful books;
-Jo Ann who did the doc shop with me (10 hours), asking questions, and somehow missing the chance to glance at my boobs during exams. And then when the diagnosis became Stage IV spread to liver, Jo Ann drove to pick me up from work while I sobbed and drop me home to be with my friends Lisa and Ingrid;
-Aunt Carole and Uncle Mike who  seem to have unofficially adopted me, who call and email constantly. Aunt Carole will also be coming to spend this weekend to help get me through this lump of fear. They are a blessing beyond belief;
-Jeanie and Karin who have provided fabulous food. I won't get sicker to get more food but it might be worth it.  Thank you;
-Jill who will be taking one of the nights of terror at my house this weekend, and will be driving me to a tattoo artist to discuss a tattoo I can get once this is over. Keep hope alive;
-Jennifer, a two time survivor of breast cancer who calls, emails, and inspires hope;
-Sheila who brought me Nico and graciously drove me to yet another MRI;
-Deborah and Carole who keep tabs on me and Deborah who drove me to yet another MRI (thanks Jeanie for the other ride);
-My nephew Josh and his wife Niki who flew in last minute to stay last weekend and walked into a morrass of it might of spread (it did);
-And Ingrid, who when the chips were down and she didn't know where to find hot fudge in the store, bought hot fudge and ice cream to the house just because that's what chicks do for each other sometimes when the news is bad.

I know I missed some folks, but I just wanted to focus on the gratitude in my life. I've lost a lot of hope in this last week. But yet, I am grateful. Cancer in the liver be damned. I have a love-filled life and I am blessed among women (except without the virgin birth thing).

Please Hold

This week I've had an MRI of the lumbar, thoracic, and cervical spine and a liver biopsy. And now I wait. Please hold. The doctor will be right with you.

Hopefully I will know more tomorrow or Friday -- I will be calling them.

The good thing is I start chemo on Friday. Right now it'll be once a week of Taxol and Herceptin, which they might change once they get the liver results. But right now I'm just grateful to be starting chemo. I want this shit out of me.