Monday, November 26, 2012

War of the Girls

Bertha and Mabel explore their new world
Well, I wouldn't call them girls at this point, more 1950 B movie space ships splashed down on my chest. The epic battle of the pectoral muscle and the silicone beast/breast. These battles can be hard and nasty, breast tissue gone, skin struggling to re-establish blood supply. Sometimes some of the skin loses that battle, as happened on my right breast. A small swatch of skin has gone necrotic and must be removed.

When will this happen, you ask? Wednesday, November 28 at 1 pm at George Washington University Hospital. The procedure will be outpatient and hopefully my sister Meg, who is here to help, and I will be blithely skipping our way back to my house within a few hours.

One million steps forward removing that nasty, cancerous breast tissue, a tiny step back requiring that Mabel, the right breast, be rid of a pesky bit of dead skin.

But, hey, what's a little dead skin when we were talking about getting rid of 800 to 900 cc's of cancer-creating breast tissue. Goodbye death machine, hello my little plastic friends, Bertha and Mabel.

Monday, November 5, 2012

Today's Fighting Thought

This seemed like the perfect image for anyone fighting for their life. Not today, mother fucker!


Sunday, November 4, 2012

Boobs On Order

Boobs in a Box
There was something comforting about the final meeting with the surgeon before my surgery this next Tuesday. At least that's what I discovered. Prior to this final visit with the plastic surgeon, I was waiting. Waiting to learn more about the recovery process for my bilateral mastectomy. Waiting to find out how much I can lift, how long until I can drive, what types of pain medicines I might be taking. It was comforting to learn those details.  And I also finally have something to do. I can finish packing. I can buy a few more supplies. I can ensure my disability and FMLA paperwork are in place (without the doctor, I couldn't even start this process).  Having something to do is helping me to relax, calm my stomach, loosen tightened muscles in my shoulders and legs.  All I can say is, thank God.

My favorite part of the appointment? The pre-surgery breast photo shoot, two to the front, two to the side.  I'm calling them my boob mug shots.  I tried to pose for the shoot, but the surgeon quickly instructed me to drop my arms back to my side.  So much for my modeling career.

Dr. Lenert, measured, assessed, discussed the fact that she may or may not be able to install the implants right away, depending on the thickness of my skin.  If no to immediate implants, she'll place tissue expanders under the pectoral muscle instead.  So I figure that when I wake up, I will find out the results of the 2012 election and whether I have breasts at the same time.  Either way, I'm happy to sleep through the last of this pain in the ass (the election and my mastectomy).

After completing our detailed discussion of skin, drains, and other surgery unpleasantness, the doctor casually remarked, "Well, we'll get those ordered," meaning she will order my new breasts.

I almost laughed out loud. They're ordering my new breasts?  Are they coming via UPS or FedEx? As a friend Lisa remarked, are they eligible for super saver shipping?  I want to know if the package will also contain a ribbon-tied box of bonbons, considering the likely high price of those new breasts.  My breasts are on order.  I'd like a C cup, please.  Oh, okay, I'll take what I can get.  As long as they don't try to kill me like my real ones did. Just mare sure you send them express, and make sure they're here by Tuesday.



Tuesday, October 16, 2012

The Things I Wish I Were Told When I Was Diagnosed With Cancer


by Jeff Tomczek  (link to original article)

Your relationships are about to change. All of them.  Some will get stronger. They will probably not be with the people you would expect. The people you want to handle this well might not be able to for a variety of reasons. Some of the reasons will be selfish. Some of them will be entirely innocent and circumstantial. All of them will be forgivable because no one plans for cancer. Carrying bitterness or anger won't help your recovery. Fighting for anyone to stick with you won't cure you. Those who can, will.

You will be determined to have more energy than you do. You will convince yourself that you are thinking straight, are able to handle all of this and do not need anyone. You will run out fuel. Your body will change first and your mind will follow. You won't lose your mind, memories or sensibility. It will all come back.   But, you will be different. You will never have the same sense of self. You should embrace this. Your old self was probably really great. Your transformed self will be even better. Give into what is
happening and trust it.

You are going to feel fear. Even if you are normally stubborn, confident and seemingly invincible you will finally find yourself admitting that you are scared of something. Cancer is scary and incredibly confusing. The unknowing will eat at you worse than the disease itself. You'll need distractions. Music and sleep will probably be the ones you resort to most. Reading will become difficult. So will watching TV or movies, having conversations, writing and basically everything else. They call it "chemo brain" for a reason. You will feel normal eventually, just a new kind of normal.  When you feel afraid let yourself lean on those around you. Cry. Be vulnerable. You are vulnerable. There will be time for strength, but never admitting weakness will cause anxiety to mount and your condition to worsen. Let it all out. Yell if you need to. Sing when you feel up to it. Sob uncontrollably. Apologize for your mood swings. Treatments and prescriptions will often be the cause of them. The people that love you will understand.

The people that love you will be just as scared as you are; probably more. They will be worrying even when they are smiling. They will assume you are in more pain than you are. They will be thinking about you dying and preparing for life without you. They will go through a process that you will never understand just like they will never understand the process you are going through. Let them process. Forgive them when they don't understand. Exercise patience when you can. Know that those who were built for this will be there when you get to the other side and you will all be able to laugh together again. You'll cry together too. Then you'll get to a place where you will just live in   the world again together and that is when you know that you have beaten this.

The sooner you recognize that you are mortal, the sooner you can create the mentality for survival. There is a chance you might not make it. Just like there is a chance that you will. Don't look at statistics. You are unique and what is happening inside you is unique. Your fight is yours alone and there are too many factors to compare yourself to others that have had your condition. No one will want you to think about death, but you won't have a choice. You will think about it from the moment you are given your diagnosis. Come to terms with it. Calmly accept it. Then, shift every thought you have into believing that you won't die. You are going to beat this. Your mental focus on that fact will be more powerful than any treatment you receive.

Your doctors and nurses will become your source of comfort. You will feel safe with them. If you do not feel safe with them you need to change your care provider immediately. There is no time to waste. This shouldn't be a game played on anyone's terms but yours. When you find the right caretakers you will know immediately. Do not let insurance, money or red tape prevent you from getting the treatment you deserve. This is your only shot. There is always a way. Find those hands that you trust your life in and willingly give it to them. They will quickly bring you a sense of calm. They will spend time answering your questions. There will be no stupid questions to them. They won't do anything besides make you feel like you are the most important life that exists. They will never make you feel like they don't have things in control. They will be honest and accessible at all times. They might even become your friends. You might celebrate with them over drinks months or years after they have cured you. They deserve your gratitude, respect and appreciation daily. If you get upset at them during treatment know that they'll forgive you. They get that you're going through something they can't imagine- but they understand better than anyone. They see it every day and they choose to be there because they want to make the worst experience of your life more tolerable.

You will need to find balance after treatment. Start by seeking balance during treatment. Eat well. Sleep well. Listen to your body. Explore meditation. Experiment with new forms of exercise that aren't   so demanding. Embrace massage and other body therapies. Go to therapy. A therapist will be able to guide you through your journey in ways you could never fathom. Do not be too proud to speak to someone. You cannot afford to store up the intensity of the emotion that comes with fighting a life-threatening illness. Let it out for yourself. You will begin to hear your voice changing. That voice is who you are becoming in the face of mortality. Listen to that voice. It will be the purest,
most authentic version of you that you have ever known. Bring that person into the world -- strengths and vulnerabilities and everything between. Be that person forever.

You will inspire others. It will feel weird.
People you haven't spoken to since grade school will be in touch. Ex-girlfriends, former colleagues... even people you felt never wanted to talk to you again. The influx of interest in your seemingly fading life will be greater than any living moment you have ever experienced. That support is what will shift a fading life into a surviving one. Be grateful for every message. Be appreciative of each gift and each visit. There will be moments where all of this attention will make you feel lonelier than you have ever felt in your life. In a hospital room full of people with messages stuffing your inbox, voicemail and mailbox you will find yourself feeling completely alone. This is when you will realize that you could afford to have a stronger relationship with yourself. That only you walk this earth with 100% investment in you. Make the investment and use this as an opportunity to reexamine your self-worth. Love yourself more than ever and recognize how much love there is for you in the world. Then start sharing that love. You will come to see that even when you are the neediest person you know you can still be giving. Giving will make you feel better than taking.               

When you get to the other side you won't believe it. They will tell you the disease is gone. Everyone you know will rejoice and return back to their lives. You'll constantly wonder if it is coming back. Slowly this feeling will fade, but cancer will always be a part of you. It will define how you see the world moving forward. You're going  to feel like the future is a funny thing to think about because the present is going to suddenly seem incredibly important. Keep moving. You'll be more productive. You'll understand who truly loves you because they will still be there. You'll want to meet new people that connect to the newly evolved version of your old self. You'll want to let go of those that don't "get" who you are now. You'll feel a little guilty doing it. Then, you'll move on. You don't have time to waste. The greatest gift you've been given is that you now understand that and you're going to make the most of every second. You're going to be the most passionate person you know going forward. Translate that passion to a greater purpose. Be fearless again.

I was diagnosed with leukemia at the age of 27. Now 28, I have been told I have no trace of the disease in my body.

Jeff Tomczek is a freelance writer and the founder of C2Bseen
Follow Jeff Tomczek on Twitter: www.twitter.com/C2Bseen

Tuesday, October 9, 2012

Prison Hair Series Part II

In the name of continuing to document the growth of my hair (Look, Ma!! I'm no longer bald!), I bring you the October issue of Prison Hair Series.

I guessed the hair length at 1 inch. What do you think?  I had no ruler handy, and frankly, I'm not that ego driven that I had to "prove" how long my hair really is.  I just figured it at 1 inch.  This month brings no images of a power fist pump, but instead shows a smiling pumpkin head gal look.  I'll have enough hair to flip back and forth soon enough. Just you wait.

And the hair couldn't come back at a better time since I'll need it in order to look fine and fancy in the hospital during my finally-scheduled double mastectomy.  Yes, folks. I'll be voting and having my boobs removed on November 6, 2012.  Wish me luck. Wish me new boobs.  Wish me cancer free (my greatest dream of all).

I know that Asshole 2 and Asshole 3 (the 1 cm masses on my liver) will still be there. But at least this surgery will remove Asshole 1 (the 1 cm mass in my breast), along with the possibility of any further assholes growing in that venue.  I consider that a big old check point in my favor.  Don't you think so?

Sing it with me and think of my boobs:

Na, na, na, na!  Na, na, na, na! Hey, hey, hey! Good bye!

Wednesday, September 19, 2012

Cute Shoes and Boob Jobs

And I'm off. Finally have the sign off from my Oncologist for a bilateral mastectomy, hopefully to be scheduled in early November. As I've said before, my aunt and uncle are blessedly offering to let me stay with them while I recover.  My uncle's only request is that the surgery not be on Election Day. Got it. Do not mess with the man's ability to vote. 

While I'm scared of the surgery and recovery pain, I am very happy to finally be able to have these petri dishes of cancer removed.  I know that there is a great deal of controversy regarding mastectomy for Stage IV breast cancer folks. At the same time, women are living longer with this disease and there are more and more studies regarding the survival benefits of mastectomy for those with metastatic/Stage IV breast cancer.  Towards the end of this approval process, I had begun to joke that I would find a place for a back alley boob job.  When a friend asked where I would find one, I said, "I don't know. Maybe Mexico."

But the approval is here and ding dong the boobs are gonna be gone.

Thankfully I am doing well.  Even though I'm not on chemo, and only receiving Herceptin to stop the tumors from growing, my tumor markers keep dropping.  My last visit to the Oncologist showed my tumor marker dropping yet again, from 26 to 21.9 (normal range is 0 to 38.6).  My Oncologist tells me that my cancer is stupid and hasn't figured out the meds I'm receiving (every good virus will mutate and learn to fight the meds being given).  In this case, stupid is a good thing.  So because I'm doing well, I can have my boobs removed.

Where do the cute shoes fit in, you ask?  Well, about three weeks ago I decided to wear my cute shoes.  Nothing complicated.  Just an open-backed mule with a two-inch wedge. But here's the deal.  My feet are still a little numb due to neuropathy, and apparently feeling your feet is important when wearing open-backed cute shoes.  Things seemed to be going well the morning of the cute shoes, my descent down my front stairs seamless. But then my foot hit something. Maybe the tread on the stair. Maybe a stone. Who knows. The next moment I was falling forward toward my front walk.  Luckily, I landed in the flowers next to the walk. After laying on the concrete a few minutes to gauge whether my foot or ankle was broken, I finally got up and limped my way to work. That afternoon's doctor visit showed a bad sprain, and I was relegated to several days of Advil, ice bags and propping the foot.  Bummer.

At first I was pissed about the ankle.  I had been slowly regaining my strength and a sprained ankle certainly put a pause into exercising.  What finally comforted me was an ecard from http://www.rottenecards.com/ showing the smiling face of a man and the caption, "Just got a booty call from life. Apparently it still wants to keep fucking me."  I laughed and laughed when I saw that card.  That's exactly what this was. A booty call from life. I could deal with that.  Every time I think about that card, I still laugh. And for some reason, that makes me feel better.

Now I'm off to book my gig as a stripper for a night. Cause as I told my uncle, as long as they're still real, I should put the boobs on stage at least once.  I think of this as the boob swan song. Woohoo.

Wednesday, August 15, 2012

Prison Hair Series 1

Department of Corrections for Hair
I've decided to document my growing hair in a series of mug shots that I will call my Prison Hair Series.  Here is the first installment. Notice the Jane Fonda fist of power in the front shot.

If you all could help me, and let me know your vote on the important issue of hair color.

Stance 1:  Leave hair the color it currently is and see just what grey might do to my face.

Stance 2: Buy that box of semi permanent auburn and get thee to a red color hence.

What say ye?


Tuesday, August 14, 2012

Take Me Away From All This Death

I don't even know how to talk about the sorrow I feel. It sits like a cold, jagged space in the middle of my chest.  This Friday I fly back to Wisconsin to finally bury my sister Melissa, the sister who died of a combination of pneumonia and heart attack just before Valentines Day 2011. Her death was so close to the holiday that when I returned to my home after the funeral, I was greeted by a Valentines Day card she likely mailed to me the day she died.

I received the call telling me my sister died while I was talking to a tattoo artist about adding to a piece I'd had done in memory of my mother who had died in August 2008.  That tattoo is a heart with the words "I love you forever" curved around the bottom.  My mother always signed every card, letter, and email this way, and I wanted a permanent imprint on my body to remind me that my mother still loved me forever.  The tattoo artist and I were discussing flowers when my nephew Josh called.  I didn't realize what he was calling about, so I asked if I could call him back.  Once I left the studio and returned his call, hearing the news, I wandered the streets near the studio, not remembering where I had parked my car.  I was stunned and I was in shock.  I walked in that confusion for an hour until I finally found my car. I flew home to Wisconsin the next day to attend my sister's funeral.  My beloved, beloved sister.

Funerals are occasions to get things done. Talk to the funeral home. Order the programs. Create a picture board in memory of.  You're so busy, you don't have time to feel the full brunt of the grief. But when I walked into the room to view my sister's body, that is when I broke down. And when I say broke down, I mean sobbing. Deep, deep sobbing that weakened my body and drew me down to the ground.  My sister was dead. The sister who sent me care packages. The sister who called to make sure I was okay. The sister who sat up all night with me, as my mother died, sitting vigil with me, each of us helping the other through the deadening pain. My sister.

So Friday I fly home to finally bury my sister's ashes a year and a half after she died--my brother-in-law seemed to not be emotionally able to deal with a burial, and only my diagnosis of cancer pushed him towards letting us bury her at all.  Now I sit with the pain freshened up in my soul, reminding me that neither my sister nor my mother are here to help, to call me, to comfort me, to hold my hand through this horrible cancer journey.  Yes, I'm selfish. I want them here to comfort me.  I feel lonely in the world without them. I want them back. Just like my brother-in-law, I don't want to bury my sister either, if it meant I could have my sister Melissa here with me again.

But Melissa is dead, and she left burial instructions.  So no matter how painful the task, I will help to ensure her burial instructions are honored.  Melissa will be buried on a rolling hill, overlooking the Wisconsin farmland she lived on for many years.  It is what she wanted.

Years ago, on my way home, I'd take a short cut through a small cemetery.  Towards the edge of that cemetery was a small grave, a lamb sculpted into the top of the headstone. The toddler buried there died in 1935. And over fifty years later, every week someone was leaving fresh flowers near the stone. I used to wonder about that grave. Was the mother of that barely two-year old child still leaving those flowers? Or was it maybe the sister of that child, the mother leaving an indelible mark of sisterly duty, compelling the living child to continue to leave flowers, even after the mother had died.  Either way, those flowers represented over fifty years of dwelling on death and loss, and that struck me as very sad.

In a similar way, my life has become about death and loss, whether the deaths are those of my sister and mother along with two close friends, or my own possible death due to breast cancer. Whatever the death or loss, I'm tired of it.  As Winona Ryder's character desperately whispered to Gary Oldman's Dracula in the 1992 movie Dracula, "Take me away from all this death."  Her breathy whisper always struck me as Winona Ryder's morbid call for Calgon to take her away.

Like that death-whelmed character in Dracula, I want Calgon to take me away too.  I don't want to lay flowers on anyone else's grave. I don't want to help anyone else die.  I don't want to think about death and dying anymore. Screw Elisabeth Kubler-Ross and her death and dying.  I want to live.

Anyone else want join me in being alive? Let's not talk about funerals anymore.  How about we skip the imaginings of end of days and burial plots? Let's focus on babies and puppies and sprouting fields of wheat. Let's wallow in new car smell, freshly planted mint, scrumptious meals, movies that won't be out for years to come. That's the kind of life I want to live. A life focused on life rather than death.  Because frankly, I'm just plain sick and tired of death. So let's all get back to the business of living and be done with it. Damnit.  I'm off to Kmart to buy some new car smell in a can. I'll drive. Wanna join me? Hop on in.

Monday, August 6, 2012

What'd You Call Me?

There are lots of ways to refer to what I have.  Stage IV cancer. Metastatic breast cancer. Advanced breast cancer.  Frankly, I don't like any of these labels.  I'd rather say, "I'm just a touch under the weather. Give me a sec, will you?"

But still, these are the official names of "oh, crap, it's bad" cancer.  Does it matter how I refer to my disease?  A study I read recently says, yes.  In the study, the group referring to themselves as having metastatic breast cancer had slightly higher survival rates than the group referring to themselves as having Stage IV breast cancer.  I know for me that the term Stage IV has always meant imminent and fast-approaching death, so I tend not to use that label.  If asked, I'll say I have metastatic breast cancer. It's the label I prefer.

Lately though I treat my disease as if it is an unpronounceable name; like the Judaic Yahweh, so beyond any human's understanding, that even a label couldn't begin to capture the essence of God.  But instead of this disease being so grand in my mind, it is so frightening, the words sticking in my throat in an attempt to not talk about it at all.  If I don't say the label, but merely motion toward it, I don't give it the chance to terrify me yet again.

It took me a long time to realize that several people assume I am going to die soon.  A look in someone's eyes, a sudden changed experience with that individual and it dawned on me, "Oh, they think I'm going to die."  Luckily I hadn't been thinking that way at all.  I still think of myself turning 70 or even 80. I continue to look down the road to what life will be like when I am old.  It just never really struck me that I was shooting down a path of death. I do think of dying here and there. But that stuck in the craw thought of, "you're going to die real soon" just wasn't happening for me, thank God.

Recently I watched an interview with Michael J. Fox. He was describing what it was like to live with Parkinson's Disease, comparing it to freezing in the middle of the road as a bus hurtles toward you. That is a perfect image for this disease. Frozen with a bus coming down on me.

Here's the challenge. How do I live with that bus on the horizon? Lately, I've been staring at that bus, looking for some sign, some clue. Will the bus hit me hard now? Or will it clip me and leave me disabled and dragging through the rest of my life?

I've talked to people who, although they've survived for years with metastatic cancer, talk only about what they can't do or what they can't have. I've gotten a taste of how hard this journey is going to be. I'm scared of what comes next. But, frankly, the bus may never hit me. I know the odds are low, but I might die many, many years from now of a standard heart attack. So I may live for years with this disease, and I don't want those years to be me focusing on what I can't do or what I can't have.

Yeah, my feet and fingers continue to be neuropathy numb. Yeah, I get up in the morning, or push myself off the couch, and I'm waddling sore. I admit I'm chemo fatigued.  But you know what? I keep pushing myself off that couch. When I see something on the floor that needs to be picked up, I make myself bend over to pick it up because I don't want to live in a littered house, and bending over will give my legs and hips a stretch.  At night, when I lift Pearl, the miniature schnauzer, onto the bed, I pause and lift her above my head several times to strengthen my arms. It might sound stupid, but it's my way of taking it slow, and I figure if I do little things along the way, I'll build up to bigger things down the road.

I remember when I was in Barbados years ago, there were two types of public buses.  One was a government-owned bus, plain blue, simple, gets you around.  The other was a privately-owned bus, tricked out with decorations, raucous, packed with riders, leaving only standing room in the aisles.  The bus I chose to ride was the 50 Cent bus, decorated with oversize images of the rapper, his music blaring loudly from speakers above the riders' heads.  Ice cream in hand, I rode that bus standing, hanging on to the overhead railings, leaning into the curves as the bus careened around the island's twisting roads. That was an alarmingly fun ride.

So maybe that's the bus coming toward me. Loud, glittery, careening around the curves.  At least then when I stare at the bus, I can listen to the music, see the sparkling decorations, and enjoy the raucous crowd taking the ride. It's better than thinking of death.

Also published on CureToday

Monday, July 30, 2012

A Girl and Her Tiara


Her highness of fuzzy, new hair growth.
Well, not so much a tiara as a sparkly head thing.  As long as the sparkles set off my hair, that's all I care about.  I want it to showcase the hair I get to keep. 

That's right, kids, my oncologist tells me that I don't need chemotherapy for a while, until we see a progression, which will hopefully be never. So my beautiful, fuzzy hair gets to grow and grow and grow.  And in honor of that news, I wear a sparkly headband.  I certainly don't need a headband, there's no hair to hold back.  But the sparkles say this virgin hair of grey and brown get to stay. Yippee!!!

The news about chemotherapy, along with the seven point drop in my CA2729 tumor marker from 33 to 26, and an x-ray and  scan that show no gaping holes in my bones, makes me a happy, happy woman. 

In the world of metastatic cancer, there are no guarantees.  But in spite of that fact, I am going to take this joyful, good news and relax.  I will wear my sparkly head band, watch bad movies, and order take out Chinese food every night, if I want to.  I am just so grateful to get positive news.

And frankly, it's about damn time I got some good news.  About damn time.




Thursday, July 5, 2012

I Used to Have Such Nice Hair

Ze baby ostrich look
And nails. I had nice nails. Oh, and let's not forget eyebrows and eyelashes. I liked those too. But thankfully, now that I am on chemo break from Taxol, I'm starting to get those things back, hair and nails. It's slow and I look like a baby ostrich, but things are growing back.  You need evidence?  Here I am in the baby ostrich mode.  I call this photo "Baldie". Can you see the slight outline of tiny wisps of eyebrow growing in? Notice the grayish tinge of the scalp hair peeking through? I hear from past chemo folks that the hair tends to come in gray at first, but then reverts to your original color.  We'll see.  Either way, I will be grateful to have hair, I don't care what color it is.  At this point I make jokes about using hair gel to slick things up into an Alfalfa impersonation.  The look may not be ideal, but with temperatures in Washington, DC reaching 105, I am sans scarf, hat or wig. No need to send myself into heat stroke.

And now the nails. There are so many wonderful side effects that come with chemotherapy. Taxol, my assigned drug for 20 weeks, is supposedly kinder to the body than many other chemotherapy drugs. However, the steroids I took to avoid allergic reactions, and Taxol, have left me with:

  • No hair, eyelashes, or eyebrows;
  • Neuropathy in the hands and feet (hopefully, this will fade);
  • Deadened nails, partially lifting off the nail beds, creating that coveted swamp thing look;
  • Acne scars from the encroyable amounts of steroid-induced acne that spread across my chest, sides, and face; and,
  • Swollen ankles I have affectionately dubbed my old Polish lady ankles, bringing questions from friends like, "Do you speak Polish or do only your ankles speak Polish" -- such clever friends.
While I hate these lingering gifts and hope they fade over time, I am certainly not stupid enough to not feel incredible gratitude toward Taxol. Taxol saved my life, knocking the cancer in my breast and liver back by over 90%.   I can deal with a little neuropathy, and suck it up when it comes to my ankles and slow-growing hair.

Still, the nails are gross looking, and the now disabled nails, combined with neuropathy of my fingers, makes it very hard for me to perform basic tasks such as opening a can of soda, pulling a credit card from a wallet, or taking out a pair of post earrings.  So I bring you a picture of the lovely little items, my lifting nails.

Was there a way to save the nails and hair, you say? Why, yes, there was. Some folks choose to wear what is called a cold cap and ice their nails during chemo, both uncomfortable procedures involving application of very cold ice to head and hands.

Here's the reason I chose not to do either of these things.  The goal of chemo is to kill fast growing cells, cancer being one of the fastest forms of those cells.  Unfortunately, other fast-growing cells, such as hair and nails, are hit by chemo too.  The theory of icing is to keep the chemo away from the fast-growing nail and hair cells. But what if cancer cells have moved towards the scalp or into the hands? What if while protecting your hair and nails, you protect some cancer too?  
 
Considering that I already had cancer on my liver when it should have damn well stayed in the breast, I didn't even want to accidentally let any cancer cells live while I was trying to save my hair and nails. So no icing for me.  I wanted Taxol to cover every millimeter of my body. I wanted it to bomb the hell out of cancer cells that might be hiding in my scalp, near my nails, or even, God forbid, on my butt.

So I knew what I was in for. I'd seen the pictures other chemo friends had posted. That doesn't make the nail, hair, neuropathy moments any easier. But it does put them into perspective.  Just call me Nuclear Meltdown Woman.  I practically shine in my decrepitude.  Hair be damned. Nails be damned. Ankles be damned. And most especially, cancer be damned. Because killing the cancer was my goal. The hair and nails were only collateral damage.



Monday, June 25, 2012

Progress Not Perfection

That's my new approach. I saw my oncologist today to go over the results of my bone and CT scans.  Here's the interesting part.  My oncologist was so concerned that the cancer had grown in size, she was thrilled the scans showed a decrease in size of the tumors. I, on the other hand, had been hoping that all the tumors were gone.  So I was slightly disappointed. Same result, different expectations, and, therefore, different reactions. My doctor has seen patients like me show increase in tumor size at this point, and I have no experience so figured I'd be at zero tumors by now.

Certainly, my oncologist's experience and reaction had an impact on me.  I am now grateful that the tumors have decreased even a little and that the chemo and Herceptin are still working. I learn quickly.

But here is what I am really thrilled about.  I get a two month break from chemo. Thank God. I need this break. The chemo has been kicking my butt to the point where I feel ground into the floor.  I am exhausted, my hands and feet are plagued with neuropathy, and now my nails are falling off.  My body feels very weakened and I would like some time to get my strength back.

So for two months I'll be receiving Herceptin every three weeks (the Herceptin will keep the cancer from growing) and I will be closely monitored to make sure nothing starts up again.

Plus, during this period, my oncologist wants to take a closer look at the metastatic area on my femur and consider using radiation on the spot. Based on the bone scan, the area is less active but the oncologist still wants to asses it. Compared to chemo, this all sounds like a breeze.

What struck me the most though is my oncologist's overall reaction. She's very relaxed about it all. There's no urgency, no air of "we need to deal with this now or you'll die." She views the cancer as something we can contain for a period of time and then go back to attacking.  This air of relaxation means I can relax too and enjoy my break, although I am fully aware that if the tumor markers go up, I will be back on chemo lickety split. My oncologist is demonstrating a progress not perfection approach, and that is a healthy view.

Even a Weeble has more hair than I do
I'm looking forward to the next social occasion I'll actually be able to attend since I won't be knocked out by chemo. And I'm looking forward to seeing the tiniest bit of hair growing back, even if it is immediately thrown off my head by the next round of chemo. I've become a person who is grateful for the very small things.  Hair growing back, the tiny bit of healthy nail showing at the base of my nail bed, the ability to even get up and attend a movie, any feeling coming back to my hands and feet. 

Progress not perfection. It's not a bad idea. And frankly, when you look like a Weeble, but with no hair, eyebrows, and eyelashes, progress sounds like a really fine thing.

Friday, June 15, 2012

Is This What Hell Looks Like?

I've seen the inside of Hell a few times. There was the stunningly abusive boyfriend of my early 20's who I was sadly head over heels in love with. After finally escaping from him, in spite of his stalking me, that one took years to crawl back from. When  I described the experience to people, they likened it to a stint in a Southeast Asian POW camp.  That was Hell.

Then there was the death of my beloved mother and sister within too short a period of time, deaths that could have been prevented had my mother not been affected by the after effects of food addiction and my sister not lived so deep in her food addiction, she chose death instead of recovery. Those losses were Hell.

Now I have metastatic breast cancer and this is a new version of Hell.  No one is yelling at me or berating me. The grief of death and loss is not rolling over me like a wall studded with sharp, poisoned knives. Instead I am being beaten by constant chemo and constant fear that comes speeding in like a roller coaster. And I don't even like roller coasters.

I keep reaching for bits of hope.  Let's be honest. My situation is hopeful compared to many.  Metastatic folks come in three varieties: one group will get the cancer and die soon after; another group will get the cancer, be treated, and go into remission for a while and then the cancer will come back and take them; the third group will get the cancer, be treated, and go into remission and live a long, long time.  We all want to be in that third group.  I sure as hell do.

At this point it's clear I'm not part of group one, since I'm responding so well to chemo, but instead a contender for groups two or three.  But meanwhile the chemo continues and with it goes my spirit, beaten down by constant exhaustion, neuropathy and other side effects.  I reach for any bit of hope to keep me floating above the constant hum of impending despair.  I just want to find out which group I'm in, two or three. So I ask my doctor about more scans, blood tests, anything to get a read on this.

Here's the deal though. Every effort I've made toward finding out more have slapped back at me, from seeing the CT scan and realizing this is real, really real, and then dropping into yet another depression fed by fear; to having the ultrasound technician scanning my liver tell me she measured a mass of 4.2 cm in my liver.  4.2 cm is what we started out as the largest tumor before chemo, and that tumor had astoundingly shrunk to 1.7 cm. Had it grown back?  This remark was made just before the weekend, leaving me in yet another weekend of terror, only ended the following Monday with a visit to my my oncologist who told me that this was not a cancerous mass but something benign.  Geez and cripes. What a waste of terror.

After this I decided I no longer cared.  Not about living. I do care about that. But I don't care about the scans or the results, at least not from the mouth of the technician doing the scan.  And I no longer care what group I'm in. Fact is I can't do a damn thing about any of these things. I can only show up, be scanned, hear the results, and then talk about the next steps in my treatment.

Here's what I want.  A break from chemo so I can experience a normal life, even for a little bit, and so I can fly back to Wisconsin and bury my sister (Melissa died in February 2011 and was cremated, but my brother in law is not doing well in his grief so seems to have avoided the actual burial in an effort to forget about all of this).  There are other things I want, like my hair back, my eyelashes to regrow (when you lose your eyelashes, you realize they actually do something like protect your eyes), to be able to walk my dogs, a social life, and on and on.  But those things will have to wait until I'm completely done with chemo. For now, I'll focus on a break from chemo and my sister's burial.  Small but at least it's something.

I've  also realized I can't look very far forward into the future, mainly due to chemo. So I've got no choice but to focus on immediate pluses and hopes.  Today is my last treatment with Taxol and my oncologist is already talking about using a new chemo formula for the next round (the Taxol has been giving me a heck of a case of neuropathy and my oncologist wants to avoid that becoming permanent). At the end of this round of Taxol, I'll have had 20 weeks of Taxol chemo. That's a lot.

Monday I go back to the hospital for a new CT and bone scan. Then the following Monday, 6/25, I'll meet with my oncologist to go over the results and talk about what to do next.  I do not believe in a God who does things, saves some, takes others.  But at this point I am a foxhole atheist, openly praying that this cancer goes away, that it won't be seen on this next set of scans. Even if it's shrunk further, that would be wonderful.  But nothing showing on the scan, that would be miraculous and wonderful.  So I'm in this foxhole praying, praying desperately.

And I'm focusing on the week break I get from chemo while we scan and talk, the one week I'll have of being awake.  I'm not quite sure what I'll do with that time. Walk a dog? Go out with friends? It's boundless. See what I mean? It's the little things that count and help.

And by the way, I wanted to thank all of you for your cards, emails, calls, assistance during chemo, going with me to doctor appointments, helping me with grocery shopping, helping me around the house.  I am deeply grateful to you all and every little thing, and I mean little thing, helps.  You all have been keeping me afloat and I cannot begin to repay you.  If I had an in with the kind of God who did things, I'd get you all straight into Heaven, or at least buy you a Slurpee. Wait a minute, the Slurpee I can do.  Slurpees on me, everyone!  Right now I'd really appreciate you all joining me in my foxhole for a prayer. Come on down. It's clean and dry and I got boxes to sit in.  Just do me a favor and pray for a miracle.  That would really help.

Thursday, May 24, 2012

Evicting my White Trash Tenants

All this talk of my white trash cancer tenants got me thinking. Last night my friend Linda began proposing interesting ways to kill the White Trash C's. Linda envisioned blowing up their meth lab, along with other clever removal methods for the C family.  Now, I'm not willing to have a meth lab, even imaginary, in my body. But I do like the idea of inventing fun and interesting ways to evict my little White Trash Cancer Nemeses.

How I see it, Billy Bob, Mary Jo, and little Buford and Betty Jo are more your trailer park, windows covered with a Confederate flag, big-ass satellite dish propped outside, beer cans strewn across the lawn kind of White Trash family.

They have a big, fancy car but never buy new clothes for the kids, instead taking clothing from church give aways and other sources of donated items.  The C's have have been seen late at night pawing through donations dropped off behind Goodwill.  Meanwhile, their car has gold hubcaps that spin.

Here's where I thought things could start.  The C's live in a trailer in a trailer park of course. Now we know they've been roaming the hood, breaking out light bulbs in nicer neighborhoods, but they always go home to their well-used trailer at night. A trailer that could easily be lifted from its base by a well-timed tornado.

Let's make sure the C's are at home.  Mary Jo is chain smoking cigarettes, rocking rapidly back and forth in her ratty easy chair. Billy Bob is on the couch, chugging a beer. He belches as he finishes the can, and grabs another from a cooler, rubbing the can against his hairy bare belly to cool himself down.  Buford and Betty Jo are in the bedroom, posting taunts on school mates' Facebook pages.  They don't notice the sky darkening. They don't hear the sound of a train coming up toward their trailer.

The signs are a bit gentle at first, the curtains blow in every room. But then the wind picks up, sending curtains stretched up and away from windows in a constant stream.  Betty Jo is just  about to post a taunt on an overweight classmate's Facebook page, a taunt she has posted before.  The sound of the train comes closer.

Finally, Mary Jo gets up from her chair and looks out the window.  She sees the massive funnel heading straight to their door. "Holy shit, Billy Bob! Here comes a tornado!"

Billy Bob grabs his cooler and sprints for the door. He doesn't look back to the children's bedroom.  Mary Jo runs to the door as well, kicking the dog who had unfortunately gotten in the way.  Betty Jo and Buford leave their computer on the bed, and crawl into the closest in their room.

Just as Billy Bob opens the trailer door, the tornado is only several feet away. The wind grabs the door, Billy Bob's hand firmly wrapped around the door's handle, and he and his cooler are thrown high into the air and across the field. Mary Jo rears back but it's too late. The wind grabs her and throws her bodily after Billy Bob.  Somehow Mary Jo has kept her cigarette gripped tightly between her lips during the entire flight.

The children? They never left the trailer but instead rode that tornado pony far up into the sky, across the fields and kerplunk heavily back to the ground. The only member of the C family who survived is the dog, who sprinted out of the trailer between Billy Bob's legs, running into a ditch and hiding until the storm was over.  He now is named Gorman and lives with a very kind family who gave him his own dog bed and lets him sleep with them in bed at night. He is never kicked and only petted.

Interestingly, Gorman was a friend of Beatrice the liver and had been secretly telling her about the C family's damages to Beatrice's part of town. She could have had the C family arrested for all the damage they caused, but truthfully Beatrice is just as happy they and their trailer perished in a fast-working, wind-defying tornado of revenge.  Just as long as the White Trash C family are out of her life. That's all that matters.

Got another idea for killing off the White Trash Cancer family? Let me know.  We could have a nice series of killing the Cancer family. Let's make cancer killing fun.

Wednesday, May 23, 2012

Show Me a Picture

Actually, don't. Monday I met with my oncologist and asked her to show me the CT scan of my liver (aka Beatrice).  The idea was that once I saw Beatrice's less spotty surface, I would feel more hopeful, grateful for the progress made. Indeed, Beatrice was far less spotty and I am grateful for the progress.  But there's something about actually seeing the spots of cancer on my liver that sent a shiver through me. Before seeing that CT scan I could only imagine the cancer as this vague thing, a cartoon-like mass on my liver. Now that I've seen the darkened spots of disease on Beatrice's surface, I am sobered. There it is. The cancer.

My doctor and I went on to talk about next steps, more chemo sessions; an ultrasound  of my breast and liver to spot check the tumors; meeting with breast surgeon with thought that sometime soon the liver will be clear of cancer (that's a positive thought); and confirming status of cancer with another bone and CT scan in late June.  In the midst of this conversation, she casually spoke of the spot that had lit up on my femur, confirming that indeed this meant that the cancer had spread to the bone but apparently was responding to the chemotherapy. Before this I had the held on to the illusion that maybe the cancer had not actually spread to the bone, but that the spot on the scan was just some sort of fluke.  So much for illusions.  I was fully in reality now.

Seeing the actual cancer, talking about its spread to my bone, reminded me that even if I respond wonderfully, this cancer could kill me sooner rather than later.  It reminded me that I may have lots and lots more chemo sessions in my future. It reminded me that my life is different now. Dating is not really an option (who would want to date Stage IV cancer gal?), adopting a child is iffy at best, even planning improvements to my house or buying a new car could be a day by day affair.  I'm not saying that this day by day imminent death is my reality at this very moment--I still live in the hope that the chemo will knock back the cancer and the Herceptin will keep the cancer at bay.  But cancer is capricious.  It learns how to respond to the meds. It changes structure. It could come gallumphing back, just like it did to a friend who has breast cancer metastasized to the liver who has discovered that the cancer is now in her brain. Those kind of thoughts are depressing.

Finally, seeing that CT scan has driven home the thought that cancer is a permanent part of my life. I will be dealing with one form of treatment or another of this cancer for the rest of my life.  I don't have the luxury of dreaming of a life after chemo and surgery where I can just move on, seeing the last year as a distant nightmare.  As I told a friend  last night, the white trash have gotten out of the trailer park of my breast and they're roaming. The goal now is to make sure they don't roam too far and don't bust out too many more light bulbs. 

So there you go. I am stuck with my new white trash friends. I didn't invite them, I hate it when they tie the hound dog up outside, and I certainly don't want them bringing moonshine onto the premises.  The question is how do I make peace with these trailer park personalities.  And how do I stop myself from busting out my own emotional light bulbs in the process?

Right now, I don't know how to do this. I say prayers. I ask my dearly departed mother and sister for comfort. I try to block the thoughts. Sometimes I do okay with these efforts. Sometimes I don't. I do know that the continuing exhaustion of chemotherapy makes comfort harder--it's a bit like having a leg trapped under a log for a never-ending period of time and trying to stay positive in the thought that someone, some where will be here soon to free the leg.  At this point, I just want someone to free my leg, give me a break, and let me rest from the treatment, scan, news treadmill.  Maybe I'll throw it out to you all. Any ideas on how to escape this world of cancer, if even for a moment?  Go ahead. Throw an idea my way. I can take it.  Maybe one of you all can put the trailer park gang up for the weekend?  Nothing permanent. Only the weekend. Just saying.  It sure would be nice to have a break.  Any other ideas?


Friday, May 18, 2012

I Know. I'm Fat.

Well, not fat. I'm plump, Rubenesque, juicy. Okay, overweight. I'm overweight; obese according to the medical world.  And when you're obese in the Her2+ breast cancer world, the news ain't so positive, pun intended.

According to OncLive, December 2011, "A large study of HER2+ breast cancer patients shows that obese patients with this type of breast cancer had worse outcomes than normal weight or overweight patients."

That's a cause for concern.

So why am I obese?  I'm middle aged (read lowered metabolism); I take one drug that lowers my metabolism further; and I eat too much for this lowered metabolism.

Another factor in my obesity. I live alone and I hate cooking for myself. I mainly hate cooking for one because  in order to make cooking worthwhile, you need to make more food, resulting in leftovers.  And I hate leftovers. Well, I don't hate leftovers.  I dislike them.  And dislike leads to my not eating said leftovers. And then that leads to me throwing away said neglected leftovers.

The result of not cooking is that I eat things like cereal for dinner, or a sandwich, or on rare occasions, chips and dip.  My mother would not be proud. Actually, she'd be worried.  And now that I have HER2+ breast cancer, so am I.  This erratic eating pattern helps keep me obese. But let's also be clear. There's no problem with me getting exercise. I am not sedentary. I typically walk 3 miles per day. The issue isn't moving, it's portions and quality of food.

With this worry in mind, I started thinking, "Wouldn't it be cool to have someone cook healthy meals for me that I can just heat up?"  I'd experienced this to an extent with  ready-made meals from  Let's Dish, given to me by my lovely AA Sponsor. The challenge with Let's Dish meals for me though is that the meals are portioned for 3 to 6, which then puts me into the leftover zone again. My trash can runneth over. Not even great tasting leftovers can make me like leftovers apparently.

I need non-leftover creating meals. I need tasty meals. I need nutritious, pre-portioned meals. After researching reviews of ready-to-go meal companies, enter diettogo.  diettogo apparently offers individualized meals on a weekly basis, with each meal costing roughly $10.  Exit the leftover zone.

The goal of all this research and thinking is that by eating ready-made, tasty, portion-controlled meals, I will hopefully eat more happily and healthily.  The end goal?  Drop from obese to just overweight.  Any advantage I can get in this cancer battle, I'll take. And dropping from obese to overweight will hopefully reduce my risk of having "worse outcomes" in the HER2+ breast cancer world. 

Portion control shouldn't be this hard, but apparently it is for me. I have followed meal plans before, lost weight, only to go back to my previous eating patterns and gain all the weight back and more.  I need help.

Helping dogs lose weight is easy. I just cut back a little on the portion I drop into their bowl, and voila, the pound or so just drops off that dog's frame. So like my dogs, I need someone to drop a measured portion into my bowl, which I will then eat with verve and gusto, although unlike my dog Sidney, I won't gulp my food.. 

The not fat gang.
If I have to act like a dog when it comes to eating in my fight against cancer, I'm cool with that. As long as it gets me to a healthier, better shot at living, place.  I might even buy myself a fancy, crystal studded collar or a new dog bed to go with this latest effort.  Or I might start acting like I'm Oprah, and treat the lovely individuals at diettogo as my personal chefs, having at least one chef travel with me in all my journeys to fame. 

A dog. A celebrity.  I'm happy to be either in this case. As long as this experiment in ready-made, portion-controlled meals dropped into my bowl ends in a healthier advantage in this cancer fight.

Can you say Woof!?




Friday, May 11, 2012

A Tumor By Any Other Name Is Still a Tumor

But at least it's smaller according to last week's tumor marker reading.  I've read that tumor markers may not always be a reliable measure of active cancer in a body. But in my case my tumor markers appear to be reliably tracking with the shrinking of the cancer in my body.

Today's number? 37.8 (normal range is 0.0 - 38.6).

When I saw the number dropped in front of me I hooted. Hooted.

This has been a long process of chemo that I had hoped would be over on April 20. But after scans, I was told the cancer was not entirely off the liver so I would need 7 more weeks of Taxol and Herceptin. Even with the good news of the scans, showing a marked decrease in tumor size in the breast and on the liver, I became depressed.  Really depressed.

Added to this the news from my oncologist that a spot on my femur had lit up in this last bone scan, I became even more depressed.  The doctor intimated that the breast cancer might have already been in the bone but it hadn't been spotted. And the fact that it lit up this time might be due to the area healing from the chemo.  Either way, she told me not to worry.  Nancy, my Imerman Angel in New Jersey, also told me not to worry since bone metastasis tends not to kill people (Nancy is a 10 year survivor of breast cancer metastasized to the bone). She is my angel.

But still, I was down, baby, down, down, down. Comma, comma, down, dooby, down, down, down.

I finally reached out to others living with long-term cancer and guess what? It's apparently normal to be depressed after going through this much chemo.  Just knowing that helped me.  And several emailers mentioned that I could ask my doctor about taking a break from chemo just so I could have a month of having some strength.  And finally, my friend Lisa came over Wednesday night just to sit with me and listen to me cry and express my frustration.  That helped immensely. Thank you, Lisa.

It's all about reaching out and willingness to take help, skills I am not always good at. When it gets bad, I tend to isolate, laying on the couch, watching depressing documentaries.  Shall we call this suicidal depression soup?  It is one of my specialties.  A day or two of moping okay. But when it extends to a week or more, time to make those calls. Glad I finally did.

And now here I am looking at my tumor marker number of 37.8, an over 90% decrease from the starting number in the 500's.  That kind of news perks me up and will help me get through the upcoming exhaustion, neuropathy of hands and feet, and other side effects.

Now I'm even looking forward to my next scan. This tumor reading was taken after the first of 7 added chemos. Imagine what will happen once we get through this next round.  I deserve a steak with butter and sauteed mushrooms. I deserve french fries (I love french fries). I deserve a cash prize -- cash stuffed envelopes welcome in my mailbox.

It's just nice to get some straight up good news, no bad news chaser.  One thing is doing well. Very, very well.

Friday, May 4, 2012

It All Works Out

I am a planner. For those of you who know me, that fact comes out in, oh, about 5 seconds after introduction. Got a group needing to be seated at the restaurant?  I will work with the host to find the best table.  Looking for ideas to serve for a dinner party?  I might have some suggestions.  My helping ways may be a bit annoying at times, but I mean well.  And I like doing it.

That's why this cancer thing has me thrown for a loop.  Never mind the fact that I really have no idea how this will work out (will I go into remission for years or will I suffer bout after bout of recurrence?).  Weirdly, at this point, the most troubling aspect of Stage IV lite breast cancer of the liver for me is not the fear of death but my total inability to make plans.

I had several post-chemo appointments. An appointment on June 2 to add to a tattoo in progress on my leg. Had to reschedule that once I found out I needed 6 more chemo treatments. I had a plan to get my nose pierced in the middle of May. Have to put that off.  Trying to plan a time to fly back to Wisconsin to help fulfill my sister's burial wish of setting a head stone and then having a memorial picnic.  I have no idea when to schedule that.  All of this inability to plan is driving me nuts. This unexpected extra chemos and throw the plans out news threw me down so hard, I laid in my house alone from Sunday to Tuesday, not speaking a word to a soul.  I was depressed. Very depressed.  Thank goodness for anti anxiety drugs, an anti depressant, and friends with listening ears, once I started talking. And thank God I talked to a woman who has been going through chemo for 2 and a half years. That gave me perspective.

Another thing I like to plan is the chemo watch days for these hopefully last several chemo therapies (I ask a friend to spend the night of chemo and the night after because I'm afraid of having a delayed reaction to the chemotherapy.)  Plus, these two-night friendly visits really helps boost my morale by making me feel less alone in breast cancer.  I am grateful for all who have helped so far. Very grateful.

Anyway, when I was first told I needed more chemo, I was terrified to ask for additional help, that I was a burden. Then my lovely friend  Deborah told me to get over feeling like a burden and ask for help.  So I asked. Some people did respond right away, but others have been trickling in over time.  I originally interpreted this as "people are sick of me and tired of helping me all the time."  This might be true for some folks but obviously not everyone. And frankly, it's okay to be tired of helping.  I get tired too so go ahead and take a break. 

 What I didn't realize was the possibility that people may not respond right away, but instead respond at the time the help is needed.,  My Uncle Mike called on Wednesday and volunteered to sleep over this Friday after chemo.  God bless Uncle Mike and Aunt Carole. They're a package of blessing for me.  My friends Deborah and Carole emailed last night, volunteering to sleep over this Saturday night, the day after chemo.  Deborah and Carole, another package of blessing.  My friend Jo Ann called and volunteered to come to chemo with me, and since this chemo session started at 10:30, going straight over lunch, she fetched lunch for us both--there'd be no way I could take the IV pole to the local sandwich shop. Jo Ann is another blessings friend.

But wait. There's more.  My nephew Josh will be flying in from Wisconsin May 17 to cover that chemo weekend, and another nephew Ben will be flying in from Minneapolis the next weekend to cover that weekend's chemo watch. I have other friends who have not signed up yet but said they will. I can't tell you how much it helps to know that people care enough about me to help and to work to get me through this. I am truly, truly, truly lucky and blessed.

The main point though is that none of this help came the way I typically prefer to work, everything planned and scheduled well ahead of time. Because things weren't going the way I usually do things, I went straight to "nobody loves me" and "I'm a burden". But the help is coming, just when it's needed, in a one day at time kind of way.

I don't believe in a  higher power who sends lessons (I'll never forget the AA meeting I attended where a woman expressed hurt and anger regarding her friend's recent breast cancer diagnosis and then she said once she realized God was sending her friend a lesson, she felt better -- I thought, I don't want to sit anywhere near that woman because I might be sent a horrible less too).

This metastasized breast cancer ain't no sent lesson. But I do see how I am being forced to learn to live life truly one day at a time and learning to trust that just because everything doesn't all fall into place in my planned kind of way, that doesn't mean the help will never come and that the love isn't there.  I am an unwillingly-converted one day at a time kind of gal now. I have no choice. If I can add trusting that the help will come, after I've done the foot work of asking, to my conversion then that would be fabulous.  Let's face it. I am apparently not the Universe's social worker and organizer.  I am just a mere bozo on the bus, and I gotta learn to trust that when I pull the cord, telling the driver to stop at the next bus shelter, she will stop and let me gently step off the bus, rather than ignore me, forcing me to take a leap off the speeding boss, dropping into a roll to land on the side of the road.

The lesson?  I do have many wonderful friends and family and they are helping and they do care about me. The second lesson?  Just because that help doesn't come in a the way I expect, doesn't mean it's not coming and that I am not loved.  I am cared for.  I am helped. And I am grateful beyond words.

Thank you to everyone who has helped.  Your kindness has truly meant the world to me and made it possible for me to continue down this hard road to recovery.  You all are my support and my strength.  Volunteer any damn point you want. I will stop assuming things. And I only hope you know how much I love you back.

And, oh, you got problems or an illness? I got yer back and will help in any way that I can.

Friday, April 27, 2012

Comfort In God

The title Comfort in God sounds very traditional, but for me God, or my Higher Power, is not traditional at all. I don't believe in a  God who does things, creates miracles, gives us lessons, saves people, takes people; a seemingly very popular view of God out in the world.

After I found out that I needed to go back for 6 more chemotherapy sessions,  I spent much of the night crying. I just felt so sad about losing yet another 6 weeks of my life to exhaustion.  I had so wanted to be done with all of this and I was afraid the chemo would go on and on and on.

But then I received an email from my friend Emmy talking about those spiritual things.  The message was good. But it was really, really good in that it reminded me of my favorite spiritual writer, Etty Hillesum. Etty was a young Jewish woman in the Netherlands during WWII. She was part of the intelligentsia, privileged, self absorbed. And she kept a journal.  In the midst of writing that journal, she took on the task of praying.  And that praying changed her.

She found comfort, she found truth about others, she found greater compassion.  One of her main tenets in her belief in God was that God is inside all of us (very Quaker) and that God doesn't do things, change things, intervene. God is here to comfort.  Many clerics in the world, I've found, also hold this theology but I rarely hear it spoken in sermons. I wish they would talk about it more often.

I'll never forget the Sunday a guest priest spoke at my church, just after my mother died.  He worked at Walter Reed Hospital, the hospital that helps the war wounded heal and return to society.  He was there to minister to these men and boys.  In the sermon that morning he talked about how often a soldier who saw his buddy die in the same conflict that injured him as well, felt survival guilt. The soldier would say, "God must have saved me for a reason." The priest would pause, and then reply, "That would be a cruel god who would take one man and save another for a reason, leaving family, loved ones and you in indescribable pain. God is here to comfort us. Not to choose who dies."  Hearing this theology spoken openly in a sermon was a moving moment for me, as I struggled with the sudden death of my mother and best friend.

This theology has comforted me and helped me feel safe to turn to my God for comfort -- I never trusted a God who would blithely send horrific lessons or cruelly choose to take my loved ones away. This comfort got me through my Mom's death in 2008, my friend Joe's suicide in 2009, my sister Melissa's death in February 2011, and only two months later, my good friend Thann's cancer death in May 2011.
And it helped me fend off comments from folks who meant well, but would say, "God had a reason to take your mom."  I would politely reply, "I don't believe God takes people."

This has not been a good period of time for me and I need all the comfort I can get.  Reading Etty Hillesum's writings has meant I was able to once again squash the idea of a cruel, lesson-teaching God and reacquaint myself with a God who comes in comfort.  So thank you, Emmy, for reminding me to go back and read Etty. The passage below never fails to do the trick. If Etty Hillesum can find God's comfort in the midst of massive human suffering, cruelty and pain, I can feel safe to find comfort in my God in the midst of my own suffering, fear and pain.

Now I hope my God of comfort will get me through the treatment, no matter how long it takes, and hopefully the long-term survival of Stage IV breast cancer.  The results of  the CT scan this week were actually very good, with statements like "IMPRESSIONS: Marked decrease in metastatic disease within the liver, with the liver now appearing smaller and micronodular secondary to treatment."  So I can be sad about more chemo, and at the same time be grateful for my marked improvement.  And I can find comfort in my loved ones and my comforting God.

Etty Hillesum's writing:

Sunday morning prayer. "Dear God, these are anxious times. Tonight for the first time I lay in the dark with burning eyes as scene after scene of human suffering passed before me. I shall promise You one thing, God, just one very small thing. I shall never burden my today with cares about my tomorrow, although that takes some practice. Each day is sufficient unto itself. I shall try to help You, God, to stop my strength ebbing away, though I cannot vouch for it in advance. But one thing is becoming increasingly clear to me: that You cannot help us, that we must help You to help ourselves. And that is all we can manage these days and also all that really matters: that we safeguard that little piece of You, God, in ourselves. And perhaps in others as well. Alas, there doesn't seem to be much You Yourself can do about our circumstances, about our lives. Neither do I hold you responsible. You cannot help us, but we must help You and defend Your dwelling place inside us to the last. There are, it is true, some who, even at this last stage, are putting their vacuum cleaners and silver forks and spoons in safekeeping instead of guarding You, dear God. And there are those who want to put their bodies in safekeeping but who are nothing more now than a shelter for a thousand fears and bitter feelings. And they say, 'I shan't let them get me into their clutches.' But they forget that no one is in their clutches who is in Your arms. I am beginning to feel a little more peaceful, God, thanks to this conversation with You. I shall have many more conversations with You. You are sure to go through lean times with me now and then, when my faith weakens a little, but believe me, I always labor for You and remain faithful to You and I shall never drive You from my presence.

(From Etty Hillesum: An Interrupted Life and Letters from Westerbork, Henry Holt and Company, Inc, 1996, p 178.)

Also published on CureToday

Thursday, April 26, 2012

Fuck

I'm a big girl. I can say that word.

I just spoke to my oncologist. The CT scan shows that there are still masses on my liver. They're smaller, but they're still there.  The largest mass has gone down from 3.6 cm to 1.6 cm.  That's a good thing. But what this means is that I need more chemo.  Six more at this point. A month and a half.  A month and a half of more exhaustion, of more time on that goddamn steroid, of living a life limited to my couch and my bed.

I know I should feel grateful that the cancer has responded so well to the chemo. I am grateful for that. But really my first response was to cry. I am tired of living this limited life. What can I do though at this point except go for more chemo. It's that or die.  Okay, I'll stop being so whiny now, or at least whining online.  I think I'll go home and whine instead. Care to join me?

Thursday, April 19, 2012

What's In a Scan?

Well, in my case, my life. Or the answer to the question, do I get to live?

Now that I'm coming to the end of my chemo (hopefully), I'm starting back into scans (bone, CT, and breast MRI).  All are meant to answer the long-awaited question of how far has the cancer been kicked back.

The breast ultrasound yesterday showed a significant decrease in size of the breast tumor by perhaps up to two-third. The tumor is still too close to the pectoral wall, so the breast MRI will give us more info about that.  However, my breast surgeon (God love her) remarked that the MRI might even show that some of what looks like tumor on the ultrasound is now scar tissue.  Yeah, scar tissue. Root for that.

The CT and bone scan will tell us if the cancer is in the bone (it wasn't before, so let's keep it that way) and if it's still on the liver.  I'm shooting for nothing on the liver. Why? Because that means chemo is over and I can go straight to bilateral mastectomy and then on to maintenance doses of Herceptin. In other words, I'd get my life back.

And moving on with my life sounds pretty darn good to me right now.  I like my bed and my couch, but they've gotten a bit too familiar. And the only command my dogs seem to follow nowadays is "sleep."  I bet they're getting tired of that too.

Check back for more news. And let's all hope and knock on wood that it's good. I could use some good news about now. And the dogs would like to relearn certain commands like "walk".

Wednesday, April 11, 2012

Dragging Ass

You can't get more basic than that. That's what I'm doing. Dragging ass.  Chemo has taken everything out of me and my life now consists of sleeping, getting to work 2 days a week, receiving chemo, and then more sleeping.  The good news is that I have only 2 chemo sessions left. The bad news is that I continue to duck and dodge the bad news bearers, people who feel compelled to tell me of those who have died of cancer or will soon die of it. Do I really need to know this? No.  Even if I were to die sometime soon of this disease, I'd rather live in the hope that all will be okay, than in the surety that this son of a . . . . disease will take me down.  Let me have that illusion. We'll all be much happier for it.

I was so depressed by the bad news bearers, that I actually decided, considering how hard it's been for me to find positive stories of cancer survival, that maybe I could help myself and others by creating a small website of survival stories. Don't know if it'll help others, but it's helped me.

http://www.uppitycancerpatient.com

If anyone has more stories of survival, let me know. I'd love to add more stories.

And more in the good news department, my new CA 27.29 tumor marker number is out. It's now 86.5.

The reference range for this tumor marker is 0.0 to 38.6.  My number started at 565.6, meaning there's been an 85% drop in the tumor marker. The hope is that this, like my liver numbers, will drop back into the normal range, I can go on to have surgery, and then simply start maintenance drugs and be around to annoy you all for a long, long time.

Either way, I'm still dragging ass. Can't wait for chemo to be over. And when I say over, I mean, don't bring that sh*t near me, I don't want to wear a wig ever again.  All you bad news bearers, step down.

Thursday, March 29, 2012

A Cautionary Tale

Let's get this straight.  I have Stage IV breast cancer.  Now when a doctor says you're Stage IV, it's really a broad definition.  Earlier versions of breast cancer come in gradations.  Stage IIa means a certain size tumor and no cancer in the the lymph nodes. Stage IIb means a certain size tumor but cancer in the lymph nodes.  Once you get to Stage IV it can mean anything from "You have a touch of it in the liver" to "Man, it's everywhere, brain, bones, lungs, liver."   So I am lumped into a big group, and before I became Stage IV myself, I also thought Stage IV meant "Man, it's everywhere, you're dead."  So since the cancer for me is only in the liver, I prefer to call myself Stage IV lite. I've created my own gradation.

Here's the other thing we need to get straight.  I know I'm in for a long haul. I know this m-fing cancer can come roaring back at any moment and take me over. I know there are risks to surgery because of infection and that infection could mean not being able to do chemo when the cancer comes unexpectedly roaring back. I now know that the main drug that will be used to inhibit my HER2+ cancer, Herceptin, has been known to stop working, but luckily there are other drugs ready to go.  I know that there are many people who become debilitated by this disease and have to stop working and focus entirely on nothing but fighting the cancer.  I know all the bad news.  And the bad news I don't know, I don't want to know.

Because here's the deal.  I want to focus on getting better, starting maintenance with Herceptin, and get back to living my life.  I want my hair back and I want to dye it purple or whatever I damn well please. I want to go through a day without crippling exhaustion. I want the luxury of only going to the chemo lounge every 3 weeks for my maintenance Herceptin.  I want to be able to take out my own garbage. I want the feeling back in my feet (that's called neuropathy and it's one of the side effects of chemo). I want to be able to taste food again.

I want to live.

But for some reason I am constantly being told the cautionary tale. My doctor tries to dissuade me from a bilateral mastectomy because what if the cancer roars back and I get an infection from the surgery. She tells me this in spite of the fact that my liver numbers are back to normal, my tumor markers are down by 61% after only 3 chemos, and all indications are that my scan will be clean for the liver (I'll be the hopeful one here).

I am told by several metastatic breast cancer survivors that I can get SSI disability immediately since I have metastatic cancer. I finally get so fed up hearing this that I tell the last person uttering these words to me that I refuse to think of disability at this point because that would be like saying I give up. Note: I have short- and long-term disability through my job and am using intermittent short-term disability to get through the chemotherapy and the surgery, I just don't want to go on to permanent disability. I am only 47 years old, for God's sake, and I don't have a husband to provide medical insurance.

I am told my another metastatic breast cancer survivor who has been living with the disease for years, "You must feel ripped off."

My reply, "No. I don't feel ripped off. If a year from now I'm on my death bed, I'll feel ripped off. But now, no."

Finding life-focused long-term survivors of metastatic breast cancer has been more challenging than I thought it would be.  I understand that this disease is hard to live with, but even the survivors who haven't had the disease spread seem to focus on the disease and it's badness over just living. What is worse is that all of this has been coming at me during my lowest, sickest, most exhausted point in my treatment. The result has been that in my head I've begun to settle. I've started thinking of end of life, started thinking of more chemo, started to assume I'll be one of the normal stats for metastatic breast cancer, dead within 2 to 3 years. I can't afford to think that way.

The other result is that I'm pissed.  I'm pissed that I have this disease and I'm sick and tired of hearing the bad news. For cripes sake, it's like a bucket full of crabs.  If one crab tries to crawl out of the bucket, the other crabs pull the fleeing crab back down.  So I've stopped looking at online groups for advanced breast cancer, I'm limiting my contact with people I know have been cautionary with me before, and I sure as hell need to have a talk with my doctor about exactly who she has as a patient.

I was watching Eddie Izzard last night. He performed a piece about his gran and her life force. Three strokes and she would not go. "I have stuff to to do," gran proclaims. That's actually been the most helpful bit I've heard in weeks, gran and her life force.  It's true. Some people have such a strong life force that they refuse to leave. Certainly, I have enough piss and vinegar that I think I qualify.  Like gran, I have stuff to do. Plus, as I told my Uncle Mike and Aunt Carole last night, plus, I don't want the young lady who insulted me by calling me terminally ill to be dancing on my grave. Because I plan on dancing on hers. 

Wish me luck in finding more focused on life survivors. And pray I have the strength to tell the cautionary tale tellers to shut the hell up.  Chemotherapy and surgery are hard enough to go through without people telling me how bad it's going to be. Plus, we've already gotten it straight that I want to live. Damnit.

Friday, March 23, 2012

I'm Normal

At least in terms of my blood work, I am.  In other areas, not so much.

Here are this week's numbers, after chemo number 7.  For all three liver enzyme levels, I am solidly in the normal range.  Yeah, Beatrice! Yeah Taxol! And yeah Herceptin!

Alkaline Phosphatase, S    108 (started at 286 pre-chemo, high normal 150, 62% drop from start)
AST (SGOT)                    24  (started at 150, high normal is 40, 84% dr op from start)
ALT (SGPT)                     37 (started at 124, high normal is 40, 70% drop from start)

The next big measurement to be taken is the tumor marker level on April 6. Here's to more low numbers all around.

Today's Chemo Trippers are my sister Meg and her husband Bob, who flew in from Wisconsin last night to help for a week.  God bless them and thank you.

The other fact I've been finding is that when I am continuously exhausted, my morale goes way down.  The answer once again has been to get lots and lots of rest (stop feeling guilty about it, Susan, just sleep).   I've also discovered that when I listen in on online support groups for those suffering from metastatic cancer, I become even more dejected. Folks in these groups tend to talk about fearing results of future scans and say things like "The cancer is now in my brain - or spine, or lungs, etc.  As one of my Cancer Support Angels, Nancy, tells me, stop looking at those groups.  I cannot afford to spend my time thinking about if this cancer will recur and where, and instead need to focus on this cancer going away and staying away thanks to maintenance with Herceptin and other drugs.

So I've signed off those online groups and am instead concentrating on "Sticking with the winner4s" as they say in AA, other women with metastatic breast cancer who have been surviving for years without a recurrence. Those stories give me hope and that is who I want to be when I grow up, at least cancer wise.  I'll never grow up in other ways.

Friday, March 16, 2012

There's My Voice

Finally, I can speak.  My Internist's suggestion of using a Neti pot to rinse my sinuses, followed by Verimyst nasal spray is making a difference. That and the meds for GERD (go ahead, laugh, it does sound funny), which can also affect the voice, seem to be helping my voice make a comeback.  What a relief.

I did get the okay to have chemo today.  I dutifully showed up at 8:15 am (okay, I was 15 minutes late) for the xray and then dutifully ran back to the Katzen Cancer Center at Medical Faculty Associate building to find out what I needed to do next. Such a good patient. Such a, I can't control this, so I'll do what I need to do to get this sucker done patient.  The front desk told me to come back at 12:30 since Dr. Kaltman will have seen the xray at that point and have a decision.  Dutifully again, I showed up at 12:00 (early this time), and when the front desk placed the hospital bracelet on my wrist, allowing me back into the the chemo lounge, I said, "I'm good to go for chemo?"  When the answer was yes, I began jumping up and down and crying, "I get to have chemo! I get to have chemo!" The folks around began to laugh and one staff member remarked that everyone should be like me about chemo.  Why not? It's saving my life.

And here's more good news.  My liver enzyme numbers continue to hold, dropping 1 point each for AST (SGOT) and ALT (SGPT), which is fine since if they kept dropping dramatically as they had been, they might go to zero and I might be dead the other way. 

But a new number has appeared, tumor markers.  My doctor took a baseline breast cancer CA 27.29 tumor marker before I started chemo.  That number was 565.6, not the highest in the world but still pretty high.  The doctor tested the number again on 3/2/2012, after the third chemo.  The result was 218.4, a 61% drop after only three treatments. 

So woohoo, gang. Woohoo. Another dramatic moment in Soozi body numbers and another number to feel proud of.  I may have bombed by GREs (I did, really) but I seem to rock in the Taxol/Herceptin killing the cancer numbers. If I had to choose which test to do better at, I'm rooting for the one that means I get to live. Wouldn't you?

Thursday, March 15, 2012

This Officially Sucks

As if chemo was ever a good thing.  But for the last two and a half weeks I've been laid out flat and have lost my voice.  That exhaustion coupled with my inability to talk has left me feeling dejected and isolated, not a good combo.

I just spoke with my Oncologist and the situation has gotten even more interesting.  She's suggesting that I take a week off chemo. What?! A week off chemo?!  A chance for this garbage to get back in there and growing again? No way.

But like a stern mother she explained that she doesn't want me ending up in the hospital. So now I have to go down to George Washington University Hospital at 8:00 am Friday morning, the day of my chemo, and get a chest xray and have a nurse listen to my lungs to assess whether I'm up for it.  I'll damn well be up to it, you can bet your ass.

But the challenge is the extra steps in the process of getting up early, running around to grab the xray order, sitting in the waiting room of radiology, laying on an xray table, running back around to have my lungs listened to, calling my doctor, and then getting the okay to go ahead. 

I called this crap in to the Oncologist's office on Tuesday. The lovely nurse practitioner suggested I drive out to suburban Maryland where their other office is located to see the doctor.  I refused, saying I was too exhausted to make that trip (it really is a haul and frankly I couldn't get off the couch I was so exhausted).  I was hoping they'd find someone at the George Washington University Hospital location to help with this. Thursday is when I first heard back from the doctor and she suggests the xray and a nurse chest listen. So once again, I'm operating last minute.  If she'd called on Wednesday, I could have done this malarkey today (Thursday) and been good to go for Friday's chemo.

Lesson learned. If the doctor doesn't call back on Wednesday, call her.  I'm tired, dejected, and now I'm angry.  But as a good friend said to me recently, "Susan, when you stop being angry, that's when I'll worry about you."  I'm really angry.  They have mobile veterinary units nowadays. You'd think they could have mobile medical units or at least a way for my doctor to work with her other location to help an exhausted patient.  This is the kind of stuff that drives me batty.  Tell them I'm a dog and send over a mobile veterinary unit. I'm sure I can lay on that exam table just as easily as I can one made for humans.  At least that would save these exhausted legs the trip.

And, oh, if anyone asks? I'm a badly-bred wire fox terrier who will bite your face off if you stick your hand in my food dish or try to take away my blanket.  Just saying.

Saturday, March 10, 2012

The Latest in Numbers and Living Well

Got my latest liver enzyme readings, checking in on the all important Alkaline Phosphate S, AST (SGOT), and ALT (SGPT).

Here are this week's numbers, after chemo number 4. Yesterday was chemo number 6, which means I'm halfway through:

Alkaline Phosphatase, S    124 (started at 286 pre-chemo, high normal 150, 57% drop from start)
AST (SGOT)                    32(started at 150, high normal is 40, 78% drop from start)
ALT (SGPT)                     45 (started at 124, high normal is 40, 63% drop from start)

The drops in numbers are lower at this point, but since we're normal for two of the numbers and just about to hit normal for the third, that's ok. I don't want to head to the bottom of the scale and have the opposite problem.

Tonight I'll be joining my friends at Mi Vecinidad, a Cuban/El Salvadoran joint down the street, to toast Beatrice the liver, and her improving health.  Finally, I'll be meeting the fabulous Nico, the National Cancer Institute Oncologist who blessedly looked over my reports and offered me constant straight, encouraging talk.  How do I handle a situation like that? Give him a lap dance? That'd be kind of creepy coming from a balding cancer patient, plus, he is gay.  Maybe I'll just pay for his dinner. That might be more socially acceptable.

I continue to experience pure gratitude for all the help I'm receiving from friends and family. I could not do this without them.  I also continue to experience challenges in finding others who are also dealing with metastatic cancer and living well with it.  Some folks are doing just that, and some seem to have dropped into a life of settling for the constant threat of recurrence and death.  This disease might take me early. Who knows. But I want to live my life and live it well, loving the people around me, helping others, just taking it a day at a joyful time.  At this point I do not need to go onto disability and I don't need to think of end of life planning (I've had the will set up for a long time now anyway).  Right now I am focused on healing, surgery, maintenance and moving forward.  Who knows what will happen next, but I can't control that, so why dwell on it.

I've got t-shirts to create (I have more in mind-http://uppitycancerpatient.spreadshirt.com).  I have organizations to volunteer for, mentoring other women going through this crap.  I have movies to see, books to read. coffee to drink with friends, walks across the Mall, jokes to crack, counted cross stitch to create, dogs to pet and play with, vacations to take, and so, so much more.

So the news continues to be good and I am happy. I did have one hell of a cold for two weeks and discovered that colds on chemo suck. Suck real bad.  But still, I'm alive, I'm loved and cared for, and now I have some fun t-shirts to wear. The Uppity Cancer Patient t-shirt was quite a hit at chemo yesterday. Wait until they see the Embrace Your Inner Cockroach, Kick cancer to the curb shirt.