Here I am

I know I've been away for two weeks. I needed to focus my energies on many other things.
Christmas bore down on my like a fast-moving train. Relatives came and went. We came and went. Meals were cooked and eaten and praised and packed into little plastic containers for another day. Tiny white lights made each evening a wonderland of respite in my house. Fires were going most of the day in the fireplace. Norman Rockwell was alive and present in Trinity.
And somewhere in between all the hustle and bustle; the music and joy; the praise and heart warmth, I managed to have two small lesions burned away in my brain by a Cyberknife and my liver biopsied for ER/PR hormonal confirmation of my original cancer pathology.
It's been quite the fourteen days. I couldn't write about it all because I had to keep each day and each separate event in its own little box until it was time to pull it out and deal with it.

But I found that God was sitting in a big comfy chair in my house, covering my family with love and faithfulness. Reassuring me of more Christmases to come. Loving me, encouraging me, never leaving my side...not for a minute. And all the while, we honored His son, the Greatest Gift of all.

2009 is two days away....a mere 48 hours. How did this happen so quickly? Through faith and medicine, strength and wisdom, truth and trust............mostly through love. Love I have for the Lord, my family, my friends, my medical family, for my life...good, bad, scary or easy.


During my last appointment of the year with Maha, she said something to me that snapped me right out of the stress of the holiday and the medical procedures that were waiting for me the last two weeks. In absolute calmness and confidence, she said, "you should go to San Antonio
next year." San Antonio....National Breast Cancer Symposium...where all development, data and hope comes together for the previous twelve months. "I should go to San Antonio" translated immediately to "you will be able to go to San Antonio" Twelve months away....another entire year of living and loving and trying our best to keep the beast at bay.
I'm ready...so ready. I am fixing my eyes on the future and I am so grateful to be taking all of you with me! Are you all ready to go??? Well then, hang on for the ride of my life.

"For our light and momentary troubles are achieving for us and eternal glory that far outweighs them all." 2 Cor 4:17

Hooray for me, I'm 53!

Today is my birthday. Another year, another milestone, another VICTORY! We have kept the enemy at bay. Even though evil lurks constantly in the background, and every so often, something wicked this way comes, we have managed to pull off another 365 days in the life of me. It is 10 days before Christmas and 17 days before the first day of 2009. I woke up this morning pain-free again, fairly clear-headed and ready to focus on the next set of tasks at hand.
I am increasingly encouraged by my recovery from all the ugliness of November, my lack of any symptoms defying what the last set of numbers wanted to tell us. God's grace is truly upon us all.

To those of you who know me, who know what this past year has been like....to those of you in my boat.....I cannot say thank you enough. Thank you for another great birthday gift. Thank you for another wild, wonderful, sometimes scary year to live. Thank you for believing, right along with me that we had a lot of things to do, a lot of life to live, a lot of love to give to one another. It was your faith in me that kept my head above water. It was your acknowledgement of my faith in my Lord that allowed me to let miracles work in my life all the time. It was your love for me that made even the worst of days and darkest of times bearable.

Tonight, I will be having a birthday dinner with my husband and daughter at Maggiones' in Durham. We will have some champagne and eat great food. And you can be sure we will be lifting our glasses in a toast for my birthday. Even though it will be just the three of us sitting there, everyone who has been in my boat will be there in our minds, in our hearts, in our souls. God and all of you, raising a glass for me.

Cheers! My cup runneth over.

High Maintenance Girl

High Maintenance Girl....HMG.....a title we have always reserved for my daughter. She's an only child who demanded attention and got it all through her growing years. She has a taste for expensive purses, designer shoes, clothes from Nordstrom, European cars. She's been a privilege to raise, albeit and expensive undertaking. She is the best thing I've ever done, HMG and all.

I began to wonder on Wednesday if I was becoming a HMG myself. I have always prided myself on being independent, confident, positive, and focused. As my journey this fall into the world of chronic pain has evolved, I suddenly find myself doubtful, distracted, dependent, and dare I say it, weepy and weak. This was brought into full bloom by a reaction I had to a pain patch I was
giving a try. I put the patch on my shoulder on Tuesday, ready for the 24-hour adjustment period, ready to be pain-free, ready for no worries. Wednesday morning, by 10:00 a.m., I was
knocked to my knees by the strength of this patch, suddenly out of control, nauseous, disoriented, barely able to lift myself off the sofa, feeling like I could not breathe......scared and alone.

My one lifeline? A cell phone call to the triage nurses on Asheville Avenue. I needed reassurance, I needed advice, I needed someone to tell me it was going to be all right, that the symptoms would soon end. I called twice in one day. I was reduced to a frightened, blubbering mess while I waited for Janet to call me back to tell me what to do. And I was, in a way, ashamed that I had to bother all of them, with my inability to handle the situation. I felt like a turtle who had been flipped on its back....soft underbelly showing....vulnerability bright white for all to see.

Now that the patch is off; now that the 8 hours of hell it took to get the opiate out of my system are over; now that I am feeling very close to normal; and now that my pain issues are minor and seemed to have improved greatly since my first round of Taxotere, (is that possible?) I can
look back on Wednesday, a day lost in a drugged nightmare, and know one thing. I do not ever
want to be a HMG when it comes to my medical care. I don't like bothering the girls. I don't like clinging to a cell phone, waiting for instructions, I don't like letting Jan hear my voice crack. confessing my fear and telling Janet that I had been reduced to crying on the sofa. And I don't like showing the underside of my belly. And I want them all to know that it takes a lot....a whole lot of bad....for me to pick up that phone and call. Because I want them all to think of me as the strong one, upright in her journey, certain of her path, confident in the decisions we all make together.
I never, ever want to be their high maintenance girl.

"For the Lord gives wisdom, and from his mouth come knowledge and understanding. He holds victory in store for the upright...." Proverbs 2:6-7

This week in December

This week in December:

I started back on Taxotere/Xeloda. My old friends from 2004
I am through with radiation in a strange place and back to the home front on Asheville Ave.
We are back to trying to figure out how to bring the marker down.
Another year has gone by since the days of Ixempra as a last, best hope.
I will have to change my profile on this blog to say "53 years old."
I will be seven years out from a transplant.

My bones are in bad shape, but everything else seems fairly manageable.
We are examining gamma knives, hormone shots, numbness in my hand.
Maha is off to San Antonio, to the National Breast Cancer Symposium. I know I will be on her mind...a little gnawing voice in the back of her head, demanding attention, wanting her to find another back up plan, and better yet, a world of possibilities.

My daughter starts her first set of senior exams...college almost done.
My Christmas tree will be decorated, presents wrapped, house full of little lights.
The days will be filled with food , fun and family.

And, as so many years before, this week in December will be interspersed with medical information, scans, hopes, prayers, gratefulness, tearful moments, snapshots of life, still going by, still being lived, still being watched over by the grace of God.....still mine, creating memories
to last us all a lifetime.

And, as always, what can I possibly say to thank all those who got me here, who keep me here.
I love you all more than you could ever know.

Oprah Snapped me out of It

It never fails. It never ceases to amaze me. It happens every time and has happened consistently since 2001. Every time I feel myself going down, every time I want to stop with the positive energy, every time I want to crawl under a rock or run away, every time I want to drown myself in that good-old pity-pool, God puts someone in front of me that makes me say,
"Wow. I am so much better off than they are. I am so blessed to be where I am instead of where that person is."

It happened yesterday. You would think that in my volunteering on the Cancer floor at the local hospital, I wouldn't need to see anything more than what I see every time I am there to snap me out of my misery. But apparently, I do. You only need to read the last month's posts on this journal to know that I was coming from a dark place....that I had lost sight of the light...that the curtains were, once again, getting heavy for me to pull aside. I have been smothered by pain and doubt and bone-weariness. I have been feeling overrun by physical and psychological demons. And, I have been feeling like God has been silent....just watching me...waiting to see how my faith was going to hold up.......knowing that I was so close to saying I'm too tired to do this anymore.

And then came the Oprah show. And there she was. The latest in the line of people put before me to make me ashamed of my self-centeredness. Another person worse off to make me thank God for his mercy and goodness. A woman who had battled stage IV breast cancer since 2003.
Another person past her 5 year mark. A woman who had heard "It's progressing again" four times. A woman in congestive heart failure because of all the treatments....who had been sent home to be with her family.....who had been told her time was short. Oprah was giving her a basement make-over for her husband and two boys. Two boys who may very well lose their mom well before they should, at 10 and 13 years old.

I couldn't take my eyes off the woman. All made-up and smiling. Painfully thin. Oprah also gave her a new bedroom since she spent so much time in there. I thought about my sofa and all the time I spend there. It made me question...did I really need to be laying around by 6:00pm
every night? I don't think I do. I think I need to remember that I can still get out, walk, shop,
and take care of my dogs, even though the pain has kept me from that lately. Pain is relative, and they make pills for it. Pills I can learn to take, if I have to, during the day so I can get out and do the things I can still do and the woman on Oprah cannot. Life is still waiting to be lived
and after watching Oprah yesterday, I knew I could not waste any more days because of the pain. It does not honor God. It does not honor the battle of the woman I saw yesterday on TV.
I bet she would take my wasted days in a skinny minute....to tack on to her own...to have one more day with her family. Of that I have no doubt.

So thanks, God, for that good slap on the face, the bucket of ice-water You poured on my head;
that good swift kick in the pants. I needed it. This afternoon, the sofa will be empty.

"The life I live in the body, I live by faith in the Son of God..." Galation 2:20

Pain Changes Everything

Let me tell you like I told my husband on Saturday: pain changes everything. I have been so very blessed to have not known much pain with my recurrence and continued fight. I would have episodes....."bad days"......as I was told by Janet, but have been basically pain-free in this long, long marathon we are running. I have always been up for the task, ready for anything, gung-ho and forging ahead. Then, suddenly I met my match and he is PAIN.

Pain keeps me from getting out of bed or getting a good night's sleep. Pain keeps me from the car, a walk, my dogs, my life. I am growing into my sofa like an outcropping of fungi. I desperately search for the right combination of pills to make me functional, to offer relief and distraction, to feel like I felt just one short month ago before all this started.
I know this sounds absolutely crazy, but I miss my chemo. My old friend whom I knew how to face and handle and recover from. I cannot wait to get back. Back to Asheville Avenue. Back to a routine I can live with. The two weeks that now loom in front of me for radiation seem ridiculously long. My bones suddenly seem ridiculously diseased. Even though the cancer has been there, lurking since 2004, the bone mets have reared their ugly head for the first time and they have been a force to be reckoned with.

So as I sit hear this morning, hoping to make it through Thanksgiving dinner without letting anyone know about the pain, I count myself so, so lucky. I am lucky because I have been in the dark all this time about the pain. I am so lucky that God has had His hand on me, protecting me from times like this when He knew all along the trials that the pain will present. I pray now that we will face the pain...stare it down...conquer it like everything else, and move forward.

Dr. Nancy, my radiation oncologist, came in last week to check the positioning of the treatment
area. We talked briefly and as she was leaving, I thanked her. I heard her say as she exited from the treatment room; "You can thank me when the pain goes away."

Truer words were never spoken. Except of course the words I go to every morning, the words that I cling to...The Word:

"Dear friends, do not be surprised at the painful trial you are suffering, as though something strange were happening to you. But rejoice that you share in the sufferings of Christ, so that you may be overjoyed when his glory is revealed." 1Peter4:12-13

The Boat's gettin' crowded

"They're just more great people in your boat," my cousin Brenda said. I had just been explaining to her about how weird it was to be navigating the world of radiation oncology; how difficult is was to meet new nurses, doctors, and technicians. I told her I did not like it that they did not know my story. They had no idea of what the last almost eight years of my life had been like.
The new people in my boat were making things crowded. Brenda thought it was great, and I wanted to elbow them out and overboard into the wicked, wicked waters of the world of cancer treatment. I felt I had enough people in my boat.

Where I was once desperate to find people in my boat, (hence the first journal entry in this blog and the name of this blog), now I was longing for some breathing room. I am still, I find, wanting to be left alone, wanting the waters to be still and calm, wanting a break from the unrelenting storm. I long for a day when my sails are full and the breeze is steady and sure, the charted course is perfect and the rumble of thunder that is a constant companion with having metastatic
disease will be silent....just for one day, one voyage, I want it to be clear sailing. I cannot see a picture of a sailboat on the water without a sense of jealousy and longing. I remember what it is like to have the perfect day, the sun, the sound of the wind filling the mainsail, me Katie and Raul the only people on my boat, the Slow Dance.

The Slow Dance has been gone since 2001, and my journey since then has often been symbolized as being in a boat with the raging storm all around me, God holding me, people in my boat loving me, helping me. People waiting for me on the shore. All of us willing to go the distance, to out ride the storm, to trust in the calm waters of faith, to keep our eyes on the distant shore of hope and determination. To know that the ultimate captain of this ship is no one person or doctor....we are all just passengers under the perfect plan and purposes of God.

So what if the boat is getting crowded again?? As always, we'll all just scoot over and make room on deck. We'll hold onto each other, share knowledge, try a new drug or two, and pray that the voyage will go on and on. We are getting ready to sail through another Thanksgiving, then another birthday, then another Christmas. How blessed am I? Everyone in the boat, some from the very beginning, has helped me see eight of these holidays seasons. In my crowded little boat, we somehow keep going forward...somehow keep on the charted course, somehow keep the rumble of thunder behind us. And God somehow finds a way to keep the waters calm and whisper to me when the winds are high and the storm is brewing, "make room, Kathy. We have a few more of my children who need to climb on board."

"I will lie down and sleep in peace, for you alone, O lord, make me dwell in safety." Psalm 4:8

Because they know me

Her name is Mary. She is a new nurse. The new doctor's name is Nancy. They are now entering my bubble of a life of cancer treatment. And they don't know me. It is like going on a first date, bringing a new puppy into the house, having your boss replaced, watching your daughter bring home a new boyfriend, having to find someone new to cut your hair just so.
Starting back from the beginning and hashing through my life with these new people. It is mentally disruptive. It is like an unwanted intrusion, a necessary evil, an unavoidable detour.

For I will be entering, for the first time since early 2002, the realm of radiation oncology.
We are looking for pain abatement and bone preservation. My femur was calling out to us with a pain so fierce that it had rendered me close to defeated and the disease that had sat so long and complacent and secondary in my hips and that leg bone was suddenly being the squeaky wheel.
A very painful, squeaky wheel. So we gotta go oil it.

I have been temporarily pulled off a chemo regime that I hated and did not work. Although I would have loved to have seen lower markers, I am relieved to not having another round right now, but I am anxious to get this new "thing", this radiation approach over and done with and back to where I am known.

It was so apparent that medical records could not possibly scratch the surface in letting this new nurse and doctor know about my last 7 1/2 years. They had no idea what was not written in the charts and scans and information that was in their ridiculously thin file with my name on it. There was not enough time in that appointment, not even in the entire day, to make sure they knew who I was and what I was about.

They do not know
What my faith is like
What a great family I have
How I survived a stem-cell transplant
How many rounds of chemo I have been through
How I deal with chronic pain and acute side-effects
How many drugs I have tried and tolerated
How much I value each day
How much I love my medical team in Cary
How bad a stick I am
How bossy I can be
How I love to volunteer around those in my position
That I show dogs
That I am not only interested in increasing the number of my days but also in the quality of those days
That I am a soldier, a warrior, a flat-out life-liver.
That stepping away from my life-line, my safety net, my healers and friends at CCNC...even for
a few weeks is rough for me. I already miss them. I took up 27 minutes of Janet's time on the phone yesterday....not wanting to hang up...wanting to stay connected and close and cared for.

During the long and exhausting initial appointment at the Radiation Oncologist's yesterday,
both the nurse and the doctor asked me the same question at some point in the fact-finding.
If I had lived here (Greensboro) for over three years, why was I still being treated in Cary.
Why had I not been seeing someone locally. I wanted to answer them with everything I have just written about in today's entry. The answer to that question, which is asked of me often, is multi-faceted and partly summed up well in the words written here today. But, both times, when asked by nurse Mary and doctor Nancy, I gave the same, simple reply: Because they know me. And that was the only reply that was necessary.

"Oh Lord, you have searched me and you know me. You know when I sit and when I rise;
you perceive my thoughts from afar.......you are familiar with all my ways." Psalms 139:1-3

I'm on my way

I'm on my way in. In to get my blood tested. In to get a physical exam. In to figure out what has been going on with me since the middle of October. I am leaving my house and driving for an overnight stay with my friend Jennifer so I can make an 8:30 a.m. appointment with Janet.
I have had a rough week. Bottomed-out blood counts, absolute exhaustion, previously unfelt pangs and twinges, unreal bouts of leg pain that prompted a 5:30 a.m. call for help. So unlike me....so unusual...so much like the cancer patient I have never been.

For the first time in quite a while, I don't trust my body and what it is saying to me. I don't trust the scans that were made last month, I don't trust the chemo they have been trying on me. I am down trodden, worn out, discouraged and don't feel invincible. Funny how feeling bad can do that do you. Despite the great days, despite the wonderful times, despite the power we have all felt of God and positive thinking and focused attitudes.....despite what has happened and been recorded over the past year.....despite all that......all it takes is a continual barrage of symptoms and setbacks for 30 days and I have had it. I feel defeated.

But I know it is just for this moment. This window of time when I am packing my little bag to make the one and 1/2 hour trip back to Cary. Back to where I have been going at least every 14 days from the day we moved away. It has to be close to 200 trips back. Back again...not wanting to go, knowing I need to. Back where the weapons and wisdom and empathies lie. Back to where we will sit down and figure it all out for the umpteenth time.
Back to finding out if this chem combo is working and if not, kick it to the curb and regroup.
Back to where it all began and will begin again.

Back to where hope lives.

"...we who have fled to take hold of the hope offered to us may be greatly encouraged. We have this hope as an anchor for the soul...." Hebrews 6:18-19

The stranger

"What is your name?", the stranger at church asked me. This middle-aged man who had come before me and layed his hand on me just minutes before to pray for me. I had been called to the front, moved by God, hearing His voice as the worship leader had called for all the dreamers to come forward. An invitation to those who still dared to dream despite those dreams not coming true....yet. An invitation for those who were still looking for God to fulfill the dreams of their life.
An invitation that I could not turn down.

As the dreamers all stood at the front of the church, waiting with heads bowed, waiting for prayers from ministers and elders and whomever felt like praying for us, I was already blown away by the invitation to begin with. For my dreams were becoming my enemy. They haunt me at night and wake me up too early in the morning. They are strange and non-specific. They are about people I know but in bizarre places and circumstances. They represent struggling and stress and distrust of my body. The dreams of my sleep project the uncertainty of my life. Under treatment again, I feel that I have fallen off the path and dream that I am lost in a maze of confusion and worry. My sleeping dreams are no where near what my real dreams are. My dreams of freedom and healing and rest and lack of worry; the wind and the water, seas and sunsets, weddings and babies, retirement and everyone released from the tension and drama of this cancer-ridden life.......those dreams are my waking dreams, my praying dreams.....the subject of my focus for the fight. My waking dreams are my hope and I am waiting, always waiting for them to come true.

So to be called to the front of the church as a dreamer was such a God moment already. Then the stranger moved up to me, put his hand on my shoulder and prayed for me. I can't remember what his exact words were the first time he was with me, but they were comforting. He walked away from me for a good five minutes before he returned and asked me my name.

"Kathy." I said. And then, through this man I still do not know, God spoke loud and clear.
I cannot quote the man directly because after his first sentence was out of his mouth, I was a blubbering wreck. Weeping and trying to listen to his words because I knew without a doubt that God was speaking through this stranger. He told me that God wanted me to know that I had a special place in His heart. That God knew I was broken-hearted right now and that He,
God was broken-hearted with me. And that God also wanted me to know that it was all going to be okay. That He was with me, always, and He loved me beyond measure. Suddenly, there was no one in that church but me, the stranger and the Lord. I heard God this time, break His silence of the past month or so, acknowledging my disappointment and weariness, and reaching out to me through a comforting hand of a nameless man on a Sunday morning.

Suddenly I could let go of the questioning. I could let go of trying to figure out where I was going with the direction of my fight. Suddenly I was back on the path and the path was still rocky, but it was straight. Suddenly, the dreams during the night meant nothing....the struggling in my head was ending. The dreams of my days are the dreams of my reality. The dreams during the waking hours are the dreams that will come true. They will happen. I have to believe and be patient. And just when the sleeping dreams threatened to cover my real dreams with a blanket of doubt, disease, and darkness, God spoke to me through a stranger to let me know that nothing is lost...no dream, no hope, no future....nothing is lost. It is all right before me, ever-growing on my horizon like a beautiful sunrise.

"Now faith is being sure of what we hope for and certain of what we do not see." Hebrews 11:1

The Year

"For I know the plans I have for you," says the Lord. "Plans for good and not for evil, to give you a future and a hope." Jeremiah 29:11

This scripture sits on my dresser at home. Given to me last Christmas by my sister-in-law, Jackie, for my birthday on December 15, 2008. I received it during a time when I was not sure about that future. I had started on Ixempra in hopes of stopping a potentially future-ending progression of the enemy. All we knew is that on October 31, 2007.....one year from this coming Friday.....scans had been run and my doctor had had to call me with very, very bad news. There was no place for the cancer to go that it had not made it to. I had BB shots of metastatic disease in all four major sites of recurrence. It was quite devastating.

It was around that time that I started putting my journal on this blog site. It was around that time that I wondered what the holidays would be like...knowing this new development....knowing what the scans said and the tumor marker levels were. It was around that time that I met with Maha and Janet and learned of the new drug.....the new hope for me. And by the time I got the framed scripture, even though we knew nothing of what success lay ahead, I believed in what the Lord had promised me in Jeremiah. I had felt all along, even after that bad, bad phone call,
that He still had plans for me. Turns out I was right.

In the year that has followed, I cannot possibly list all of the divine and spiritual things that have happened to me. This blog site documents some of the highlights, but cannot possibly convey
how God has woven such a beautiful fabric out of the threads of my life with cancer and all of the people who surround me in this fight....this destiny. The love, support, revelations, declarations,
and prayer....so much prayer.....can never be measured.

Maha and I talked briefly about this on my latest visit with her. What a year it has been, we both acknowledged. What a very different path we have walked than the one we first prepared ourselves for back on November 1, 2007. God did have plans for me, for all of us....a future and a hope. I now find myself a volunteer, a comforter and example for others in the fight. I always knew God would use me in some way to offer care, compassion, and empathy, I just never imagined that I had to stare at the end of my rope, turn my back on the facts, step out in faith and know that some how, one year later, I would be living life even fuller than before.

What a year it has been. Makes you wonder what the next year will be like. God has blessed me with the knowledge that I will have the chance to live it and I cannot put into words my gratitude. Nor could I possibly say all I want to say to the people who lived this year with me.
You know who you are. You encouraged me, prayed for me, treated me, loved me, supported me, comforted me...believed in me. You all saved me. All of you and my ever-faithful God worked in perfect, life-giving harmony to ensure my survival for another year.

I ask you all....are you ready for another great year? I am. I am far from done here. We have work to do. We know it won't be easy....but I guarantee you one thing: it will be fun, inspiring, emotional, spiritual and divinely woven...just like the past twelve months. So let's take a breath and get ready. Another year of life is waiting...maybe two or three or fourteen. Let me just say here, before I forget and even though it is not going to fully express what I feel, thank you all, oh so very much, for living my life with me. You and the Lord, giving me plans for the future.

Park it in the corner.

I have waited over a week to write anything in my journal about the CCNC support group that met, no,no....it happened last Wednesday night. It was an open forum. It was the patients' and caregivers' chance to ask the oncologist any question....any concern. It was Maha who was up for the answering. I knew it would be good. I knew it would be intense. And I took my 21-year old, self-absorbed in her own life, daughter to let her get a true sense of what people deal with on a daily level when they are fighting the beast. When she thinks her life is in the tank, I wanted her to remember the group that gathered for this meeting and realize just how lucky she is...how insignificant her social drama can be. And I wanted her to watch Maha in action. I wanted her to know why I had put such absolute trust in this woman for the past almost eight years of my life. I got what I wanted and way, way more.

First of all, they kept having to bring in chairs because of the number of people who showed up.
Then, right before things got started, they wheeled in a patient, down from their hospital room, family and friends in tow. A newly diagnosed. A frightening and aggressive cancer. The fear, anger, and disbelief so fresh so tangible. All the rest of us knew what they felt like.....they were coming in to question why.....to try to find a reason...to try to blame somebody or something for this catastrophe. The were overly distraught, exhausted, and heartbroken. They wanted to know how to deal with their anger.

And in the midst of this emotional maelstrom brewing all around her sat Maha. The voice of intellect, calm and reason. When she spoke to their questions, she turned to the family and the rest of the room fell away. She looked right at them all and said so many true and great things, I doubt I can remember them all. The same kinds of things she said to me on June 1, 2001 during our first appointment. Like, (loosely quoted, of course)
We couldn't change the fact of what has happened. That is finite.
Fighting cancer is a marathon, not a sprint. If you insist on making it a sprint you will absolutely wear yourself out.
To the caregiver; you need to take care of yourself or you will be no good to no one.
There have been great strides in the treatment of your type of cancer, so there is hope. You have to have hope.

And the two most profound things said at that time, that moment when she had engaged the small group in the corner and the rest of us became observers of a remarkable event I have thought of this way: one statement for the family and one statement for the rest of us.

The statement to the family who sat before her with anger rolling off them like a tropical depression comes off the coast of Africa was: You need to take your anger...all that negative emotion...and park it in the corner. Put it away. It's not doing you any good. You cannot move forward through this as long as you are looking back.

The statement for the rest of us was about fear. The fear that each of us deals with and fights so hard to squelch on a daily basis because of our disease. She told us all that she has fear, too.
Every time she starts a new treatment on a patient she is fearful that it might not work. Wow.
Me too, Maha, me too. I realized that I have probably scared her a lot in our relationship. It was such a humbling "aha" moment for me that through all the things she and I have gone through, she even shares my fear.

As the days have gone by and Katie, Jan, Rebecca and others have re-hashed that night during the support group with me, by far, just about everyone talks about and will remember Maha engaging that family in an intimate and reassuring conversation about what to do with anger. That "park it in the corner" phrase is bound to be quoted and re-quoted by us all. It was great stuff.

Katie now knows what an amazing woman my oncologist is. The quiet confidence exhibited by her during that Wednesday night gives Katie confidence that I will be well taken care of and that Maha is a huge part of the reason that I continue to believe that I can live a long and full life. She will not soon, if ever, forget all she witnessed there.

As for me, I have been mostly touched and changed by her statement on fear. For almost eight years, fear has been the hardest thing for me to deal with. Fear can be paralyzing, crippling and crushing. It can change your outlook, your faith, your personality and your health. Fear is like a creeping, multi-legged insect that can cover your brain and blur your focus. There are times, days at a time, where I am constantly fighting the fear, trying to stand tall, trying to stay faithful and focused and full of hope. To know that my physician knows my fear, shares my fear, is even willing to confess my same fears means more to me than anything else she could have said on that Wednesday night. We all want to know that someone understands what we are going through. And that one revelation about fear got me thinking that if Maha has it for her patients,
so must all my girls. Janet and Jennifer and Jan and Gail and Lynn and Rebecca. They must all feel a certain amount of fear for me when I need to start something new to try and keep the beast in check. OMG I had no idea. And I know why I had no idea......because they all have an
incredible ability to park it in the corner. Fear, like anger, is negative and will get you nowhere.
My team knows that in order to treat me as well and successfully as they do, they will have to park quite a few things in the corner and set about the business of moving forward to better results, better numbers, better treatments......my better life.

"The fear of man will prove to be a snare, but whoever trusts in the Lord is kept safe." Proverbs 29:25

The Group

"Gosh", I said to Jennifer. "I'm gonna have to stay down at this end of the room because those three women are talking continually. It's like white refrigerator noise. It's driving me crazy." (It was my volunteer/patient day at CCNC.) She cut those baby-blues at me and said with a snicker, "And this, coming from you????

She then reminded me of our old chemo group. It was three to five of us girls who happened to sit down at one end of the treatment room. We were all outgoing, talkative, and at times, loud.
Always laughing, having fun and making other patients avoid us like the plague because of it.
No one slept down in our corner. Rarely did any of us have a bad day once we had spent it with each other. I look back on that group and think about where we have all gone, what we are all doing, HOW we are all doing. Dawn, Barb, Sue, Paulette and myself spent one season of summer/fall all together at the far end of the chemo room. Being our own little support system....sisters in the fight. Breast, ovarian, colon...Stage IVs the whole lot. It is pretty amazing to think that we found each other under the worst of circumstances. Dawn, Sue, and I were carry-overs from the old office location. Living our lives straight past the percentage predictions of our circumstance. We are all three approaching our 5-year anniversary of living
with what was supposed to have killed us.

The group is no longer intact. We lost Paulette, a soldier who entered her fight way too late in the game but laughed along with us until she was sent home with nothing more to be done. Barb has not had to come back.....and I hope it stays that way for many more years to come. Sue, Dawn, and I have all had breaks over the past six months, but we each know how the other is doing. Dawn is off to have some surgery...ever aggressive...always attacking her enemy. Sue is opening up a bike shop with her daughter, and me...well you know what I've been up to....living life as large as I can.

If you take a good look at us.....Dawn and Sue and I.....battling the hard way since the winter of 2004....it is remarkable that all three of us; one in their thirties, one in their fifties, one in their sixties; all three of us Stage IVers are still alive and kicking and screaming against the enemy. A true testament to our great healers, both human and divine.

So the next time there are a group of women cackling continuously in the corner of a medical treatment area, you just might not want to avoid them. They could have the secret.....they could know the skinny....their ability to cause such a commotion every time they are together could be just what the doctor ordered. I believe those times together, laughing and supporting each other is definitely a piece of the puzzle...faith, medicine, family, friends and finding people like you.....that fit together and give you a longer fuller life, even when the enemy is ever-circling the group of LOUD and happy soldiers.

"A cheerfull heart is good medicine, but a crushed spirit dries up the bones." Proverbs 17:22

Too Much Life?

I had too much of my life crammed into last week. As I am sitting here, totally uninspired about what to say, I just start wandering back to last week. A week of too many "moments", too much drama, too many surprises...too much life.

Physically, it was not the best week for me. I am not tolerating my new combo of drugs as well as I'd hoped. The ever-present possibility of a sudden nausea ambush has begun to affect the way I approach each piece of food that goes in my mouth. I think also, that my old friend Avastin is causing my calves and sides to cramp....again at any given time. And then there is the new feeling of exhaustion......days of exhaustion....that comes on in the early afternoon and put me on my sofa much earlier that I would like. So each new day has become like a physical crap-shoot. I never know what the roll of the dice will bring.

Mentally, I have had to deal with another heartache for my daughter. If only I could transfer my life lessons into her directly. If only she knew how to stand alone and tall and strong in any situation. If only...and this is a double edge sword.....she could live without me for short periods of time when her life gets awful and she feels like she can't go it by herself. I do love feeling needed and don't get me wrong...I am SO-O-O glad that I am around to be her Mom and her supporter, but I am still looking for that sprouting of independence...HER faith...HER strength....HER confidence. Not me trying to give her mine.

We attended the CCNC support group together last Wednesday night, me hoping to give her some real perspective. It was such a raw and real place to be and it will be a whole entry in itself. The feelings and emotions that were shown there were more than most people are exposed to in their normal lives. Such an intense experience...so much to for her to learn...so much for us to discuss.

And then I ended up starting my girls' weekend beach trip with a trip to the emergency room. Hit by a fever of 102.4 in the wee hours of Friday morning, and already in Wilmington, Debbie had a small taste of how unpredictable living with someone in chronic cancer treatment can be. We spent three hours waiting, wondering, IV's running with antibiotics and saline. It turned out to be a urinary tract infection, but the possibilities of what it could have been were frightening. We prayed.....a lot. When we got the word that it was not low blood counts and an identifiable and easily treated UTI, we continued on to the beach anyway. I was determined not to let this small set-back get in our way. I cheated by drinking coffee each morning, but never did cheat by drinking wine. Not quite the "girls gone wild" (Ha! at our age) we had in mind. And it rained.....the entire time we were there.

On top of everything, I did not see my husband for five days. Schedules were not in sync......conferences and support groups to attend.....just too much life between us. Missing days we will not have back to spend together.

When I got back home from the beach trip yesterday, copies of Today's' Charlotte Woman were waiting for me. The article is out. My life before strangers, hopefully an inspiration. My husband and I both sat down in separate rooms to read it....both afraid to cry in front of the other...seeing it in writing in a magazine somehow making it more magnified.

My of my, where did all this life come from???? It seems a mess sometimes, out-of-control sometimes, not going the right way sometimes, hard to live sometimes. But it is still what it is.
It is my life and it is still wonderful. In between all the negative stuff crammed into last week,
there were still so many moments to remember, things to cherish, words to live by.
Time with Katie, seeing Maha touch her face, hugs and kisses, caring friends, walks on the beach, prayer, solace, relaxation, a haircut and color! So much life....but I now know after looking back, it will never, never be enough.

"This day I call heaven and earth as witnesses against you that I have set before you life and death, blessings and curses. Now choose life, so that you and your children may live." Deut. 30:19

At least he went down swinging.

I lost a fellow soldier this week. On September 30th, my dear sister-in-law from South Carolina
suffered the loss of her brother, Jay's, partner. These two guys had been together for longer than most marriages. They had built a long, successful and pristine life together on the outskirts of Charlotte, and even though we had not seen a lot of each other over the past few years, they have always been part of the family and I know Jay had been keeping up with me and my progress over the last few years.

When my younger brother called two weeks ago to tell me that there was trouble, that Jay's partner was in the hospital, that is was some sort of acute lymphatic leukemia and, for a chance at survival, that they were going for high dose chemo and bone marrow transplant, I knew what terrible, terrible things they were all in for. You all know from reading my entry "The Touch" how truly, awfully sick one gets in the brutal process of marrow implantation. It is nothing but ugly. Whether it be from your own stem cells or a donor match, the high doses of chemotherapy are enough to kill you. And they did.

When I got the e-mail from my sister-in-law on Monday that he had lapsed into a coma and been put on life support and the family had been called in, I called Jay and left him a message.
Because I knew at that moment, he had to be re-thinking every decision the two of them had made together over the last month. He was probably regretting that they didn't just skip the treatments and give his partner whatever time he had left to die at home. So I left a voice mail for him to let him know this: at least he went down swinging.

For those of you who have been fortunate not to ever have to be faced with a cancer diagnosis,
to hear the awful words, to have to look at your life, cut short, on charts, scans and test results,
you will not be able to understand the significance of the end of the last paragraph. I feel, that no matter what you've been told, no matter how badly the deck is stacked against you and what the odds are, you have to fight. You have to do battle with the enemy. To try and fail is sad.
To not try at all and still get the same results, to me would be the worst thing of all. So as I left Jay the message, I said I was sorry for the terrible turn this was taking, but mostly I talked about how much I admired their courage. The courage to face the fire. The courage to stare at a terrifying beast and say, "I might only have a 5% chance of beating you, but that's better than no chance at all." The courage to be a soldier in the battlefield instead of a passivist hugging a tree.
For many, many reasons that I will not get into, the courage it took for Jay's partner to say "bring it on" and "we have to try" is phenomenal, monumental....supernatural.

He did not make it through the second round, his body giving up long before his spirit. He died Tuesday at 10:30 am. When I talk to Jay again, I will talk to him about regret. Not regret in the fact that they tried, but the awful regret that he, the survivor, would have to live with from here on out had they not. That overwhelming "what if" that would have come with taking the passive route and not the treatment decision. That constant looking back and wondering if perhaps his partner could have been in the 5% group. That maybe he would have been one to make it through and recover and live a few more months or years or who knows? I will tell him that living with the regret that they had chosen to do nothing but succumb would be so far more haunting that living with regret that his last days were physically miserable. You never, ever want to look back and think "we should have done more." It is so much better to say "we did everything we could."

So my message here today to anyone who has made these tough, sometimes unthinkable-in-scale decisions and ended up losing someone is to always, always honor the memory by honoring that decision....honor the courage......honor that faith. Don't regret it! There is so much more to be said for swinging at the ball and missing than standing there and watching the perfectly thrown pitch come at you and not swinging at all.

"I have fought the good fight, I have finished the race, I have kept the faith." 2 Timothy 4:7

About the husband......

My sister-in-law called me yesterday. The article for Today's Charlotte Woman is on it's way to the printer. "It's wonderful," she said. "There's just one thing that bothers me. They never mentioned your husband."

What?? Oh well. It is so like him to once again be a fixture in the background of my crazy cancer life. When I told Raul this, as always, it was not important to him. What remains important to him is that I continue to do well, feel well, feel purposeful, stay positive and live life.

Amazing, isn't it? A man, a very handsome man, who has weathered the storm with me for eight years. Never once wanting to step away. Never once has he wanted to give up. He has never lashed out, cried out, or let me sink into the depths of darkness of my disease. My husband is a little bit of God on earth. Put here to be a rock for me to stand on and that is no metaphor. He is my physical proof of God's solid ground on which I stand.

I often worry about the toll that being a silent and strong caretaker must take on him. He always thinks of me, my comfort, my condition. "How are you feeling?", and "Can I get you anything?" are two questions posed to me at least once every day. He knows where to put the heating pad, how to stop the chills, what pills to bring, what crackers taste the best, and what I look like right before I'm about to sink from over-doing it. He insists on getting me out of the house when I'm down and taking me on trips even when I sleep the whole way in the back seat.
He is adamant that I live the life I love....he has never allowed me to be a victim, even when I wanted to. He has taken every phone call about test results with poise and determination,
optimism and calm and reason.

Is he so perfect? No. But he is the perfect man for me in how I have dealt with living with the
beast that invaded our home almost eight years ago. And even though I was never a big believer in Cinderella, my prince, my knight in shining armor, showed up at my bedside on May 14th, 2001 when "cancer" was being whispered in my ear. I never knew the depths of the man I had lived with for 17 years prior to that day, but I certainly do now.

This past Tuesday, the pastor of the Food Bank where I volunteer some of my time asked me
how Raul was doing. "Oh, he's fine." I answered as always. But it really got me thinking. Is he really??? I should probably find out when he gets back home tonight. He has been away all week, in Scottsdale, Arizona. He is at a conference filled with great fun and food and decadence and natural Arizona beauty. Being pampered at a five-star resort...no one to look after but himself. He so deserves to be there. And when he walks through the door this afternoon, I will ask first..."How do you feel?" and "Can I get you anything?".

I will make sure that he is fine, really fine and not just saying so. You see, no matter what I have written here and how many people I have credited for my continued victories in this battle, next to God, he is the one person I am certain I could not have fought this war without. There are great physicians, nurses and caregivers all over the country, but there is only one Raul
and I am so, so grateful he lays his head on the pillow beside mine every night. I am certainly blessed to have a husband strong enough to stand behind me...always...even when no one can see that it is he who is holding me up.

"How are you?", he asked. "I'm fine", I replied. "Any fool could see that," he answered.

First line from first date with Raul. 5-4-82. I was hooked.

It's gonna rain

In all my years of writing in journals and now blogging, I have recorded my relationships with so many people. I have talked about all my relatives. My ever-present and strong husband and beautiful daughter. You all know I lost my Dad in '07...the "bad " year. I have talked about my friends, the faithful ones who share in my ups and downs in all kinds of different ways. I have mentioned my wonderful boss and my church members who pray every day for me. You know about my show dogs and my dog people. I have written about them all. But, looking back through almost eight years of writing, it is easy to see that I have written the most about my medical team and my fellow soldiers in the battle against cancer. To me, the entries I love the best, love to re-read and remember why I wrote what I wrote, are the entries about my doctor,
my nurse practitioner, and my chemo nurses.

I have written about them so many times...for them, for me, and for the people out there who
somehow find their way to this obscure little blogspot. I have always wanted everyone to know the truth about what goes on in those offices on Asheville Avenue. I want everyone to know that I believe without my faith, family and them...my girls....that I would not be sitting here on a chilly September morning in 2008, getting ready to plan for Parent's Weekend at NCSU during my daughter's senior year of college.

I have been so blessed to be hand-picked by God to be cared for by everyone at CCNC Cary.
And, truthfully, I have for over a year, thought occasionally...when things looked dark... about the words I would write to each of them if at anytime we figured out that the fight was over. Those thoughts and words are tucked away in a secret place in my heart, and after yesterday, I got a slight twinkle....a sublte hint that I might not have to use those words for a long, long time....maybe never. Because my friends, it's gonna rain.

After my meeting with Maha yesterday, after learning my blood counts were, for the first time in regular chemo treatments, too low to get a second dose right now, we were once again discussing how far we'd come in breast cancer detection, prevention, and treatment.
She threw out one last comment with a twinkle in her eye, that I should see what's coming down the pike. Meaning, new developments are on the way....something is out there to make her hopeful...to get her excited, and I now believe I will get to see it.

I turned back to her and recalled a line from the show "Stand Up for Cancer" where a research doctor was talking about their advancements and how close they were to cracking the impossible code that will stop this awful, insidious disease. He gave the analogy that they (researchers) felt like it feels just before a rainfall, where you can feel it in the wind, smell it in the air, almost taste it before the downpour starts. And then he said, "Well, guess what? It's gonna rain." It made the hair on the back of my neck stand up.

So, I think back on this year...2008...where in its beginning I was fighting for time with Ixempra, my family made the declaration and then the same thing came from Maha....that this was the year. The year of blessings and love and miracles. Even if it would all end tomorrow, it would still be true. It has been one heck of a year so far. But perhaps, we haven't seen the best of it. Perhaps, my friends, its gonna rain any day now and by Dec.31 2008 it will be pouring.

"Test me in this", say the Lord Almighty, "and see if I will not throw open the floodgates of heaven and pour out so much blessing that you will not have room enough for it." Mal. 3:10

Thoughts while waiting

Have we made a mistake here? Have we broken some kind of rule here, becoming so entwined in each others' lives...such great and caring friends within the confines of this office?? We have grown to care so much about each other. The doctor and the nurses.....stepping over the line into a deep emotional relationship with their patient....with me.

Right now, they are all worrying about me, praying about me "sending me nothing but good thoughts", the PC Rebecca says (I know she is praying), hating the fact that I have been called with bad news and called in to run scans two weeks earlier than we thought. I know they are pulling for me, hoping against reason for me, and at times they grieve for me. (maybe today?)

And I am a study in opposites right now, sitting in an exam room, waiting for Maha, overwhelmed by gratitude, overcome with a sense of guilt. Guilt because I hate dragging them all into the constant drama of my up-and-down cancer-ridden life. Gratitude because I love them all so much and they are part of my family, part of my life, and, partnered so very well with God, a huge part of the reason I am still here after all this time.

As I wait for my latest meeting regarding a higher tumor marker and the latest pictures of possible disease progression, it is hard to explain the emotions I feel. I try to write them on a yellow legal pad, knowing that my doctor will use the next page of the same pad to describe what things look like and what drugs we will try next. I know she is waiting just as anxiously as me, having given out her cell phone number to the radiologist who is reading my CT scans. By the time she makes it into the room, I am, for the first time ever in the exam room, crying.

When Maha does walk in, her first question to me is "have you been crying?" I am sure she is surprised to see evidence of such a thing...rarer than the pileated woodpecker. I tried to explain, now dry-eyed, that my tears were shed because of everyone's concern for me right now...my family, my friends, my dear family at CCNC. Knowing that they were riding another roller coaster with me, all of us gripping the guardrail in front of us, petrified of making the crest of the highest point and seeing what the drop will be like. My tears had not been for me and the upcoming results, they were for everyone who loved me and who were waiting to know what was coming.

"There is progression," starts Maha, "but it is slight." Seven little words, another flood of tears,
from me...how bizarre. She must think I'm losing it. But these were tears of relief. Not for me but for the dozens of phone calls that will have a positive message. Relief for my girls in the back,
for Janet, for Rebecca who had been bustling around the exam room area. Smiles all around for the fact that we had a new plan, a new set of artillery, a starting point much less scary, much less urgent than the last time. We will save the big guns for later. Hugging Maha, and crying tears of relief for her, my heart of hearts, because we had a fight to fight on relatively even ground. Because she hadn't had to tell me news like she had last November. Because what she is scribbling down on the yellow legal pad is a battle plan we are approaching with calm and confidence. Hallelujah.

As I was driving back home yesterday, making my phone calls, hearing everyone's relief through the cell signals, the new set of drugs already coursing through my veins, I thought a lot about the fact that the group of women who surround me at CCNC may have crossed over an invisible line into my dramatic little world. But what should I expect?
Three of them have been with me almost eight years, one at least five. I am a long-termer. Something they don't see a lot of. No wonder we all love each other so. Out side of their immediate family, they see me more often than their relatives, and vice-versa. There have been no rules broken here.....but there have been many followed. Rules like "This is my command: Love each other." John 15:17., and "if I have a faith that can move mountains, but have I not love, I am nothing." 1Cor. 13:2b, and this one "Whoever loves God, must also love his brother." 1John 4:21. When it comes down to it, we are following some of the greatest sets of rules ever written,

SO we all are just as we should be: caring for each other, loving each other, inspiring each other,
making my life, and hopefully theirs, richer, deeper, purpose-filled and meaningful. No rules broken, no mistakes made...we are all doing it just right.

The Touch

It is December 17th, 2001.

I am in the hospital, as sick as I can be. My counts are at .00001. I have mucositis everywhere.
I have a fever. There are 14 bags of medicine hooked into my Neo-star external catheter. I am too weak to move, to weak to think. Trying to stay awake through a cloud of morphine. It is the lowest of low points during my stem-cell transplant. My cousin Brenda has faithfully spent the night on a cot next to me. My husband, banned from me by a cold. Little moans escape me with each exhale. "What's wrong?" Brenda asked. "Nothing." I say, "it's just the noise I make when I'm miserable."

One of the bad, bad times, that day back in December 2001. 2 days after my 46th birthday. 8 days before Christmas. I easily could have been convinced I was dying. Knocked down by massive doses of chemo.....before my stem-cells can start back to work. Holding on, barely able to speak. A lost day to all the medical treatments, pain and semi-awake state. Until that night.

Somewhere during that night or early morning hours...in that hospital room with only a soft light on over my head and the constant whirr and whoosh of the IV pumps, I was awakened. Awakened by an unmistakable hand on my left shoulder. I opened my eyes to find no one standing there. I was alone. Alone with the knowledge that I had been touched. Touched by a strong and comforting hand. A touch that said "I am here, I am with you. It is well."
Somehow I knew it was all real.....not a dream...no way. God had come, as always, just when I needed Him most.

It is December 18th, 2001. I wake up and I know. My counts are 600. The doctor warns about premature optimism, but I can see he is pleased. I can feel it in my bones, my body, my soul.
My new immune system has kicked in. The stem cells have engrafted. All is well, just as I was told the night before.

I walked out of the hospital on December 21st. Home to my family. Home to Christmas. But most importantly home with the first-hand knowledge that I am never alone, particularly in those dark and dreadful hours.

Today is September 8th, 2008. I was sitting on my front porch this morning. It was a beautiful start to the day. For some reason, I thought about that touch as a slight breeze blew across my shoulders. A gentle reminder that after all this time, down this long and winding path, God's message has never changed: "I am here, I am with you. It is well."

"If I rise on the wings of the dawn, if I settle on the far side of the sea, even there your hand will guide me, your right hand will hold me fast." Psalm 139:9-10

I'll take those days.

I was so glad to see her today. The patient I had talked to last week who was in a very dark place. The woman who could not get out of the bed, so paralyzed by her predicament...so depressed by her diagnosis....put under by the way her life had been forever changed.
Today she was in a better place. She was learning to live with it. She was beginning to wander out of the darkness a day or two at a time. She was smiling at me. It was great to see.

I also have been waiting for a call from another woman who has not left her house since finding out about her stage IV diagnosis. She cannot function. She cannot bring herself to call me, to reach out to a fellow sister in the fight. She is in the darkest of places. Refusing to get help, refusing to accept love and caring, refusing to live.

I have given the first lady my pep talk. Told her all the things I will say to the second woman when and if she calls. Things like how you still have your life to live. How you cope with a new "normal". How you must not let the darkness over take you. How you have to fight, fight, fight...never give in...always have hope. How you can live a long and full life even with this disease following you around.

And if that doesn't help them. If either women cannot get past their circumstances and get on with the business of the battle, I have one more thing to say to them: if I could, I'd take the days. I'll take all the days you are wasting. All that living you are not doing. Every hour you spend poorly by feeling so sorry for yourself...give them to me. I will live them for you. I will add those days to my own. I will spend them wisely, cherishing each moment, recognizing each day for the gift that it is. I will use that day you spent locked in your room to ride in a convertible, kayak on a lake, go out to a great restaurant, cruise up the waterway on a boat,
walk down the street with my husband, sit outside in the early evening with a glass of wine and Michael Buble on the stereo, and take my daughter shopping for shoes. I promise, if I could only have your wasted days, I would see to it that they were spent with so much purpose and enthusiasm and love, it would make you want them back.

Really, my friends, life is precious, days are like diamonds. And I want all my time to be well and meaningfully spent. So I say to anyone who makes it a habit of wasting your days.....please don't. To those of us who live with the fact that our days may be limited.....that time is golden.
Honor God and spend it fully.

"Better is one day in your courts than a thousand elsewhere." Psalm 84:10

You get what you get

The three drug reps were talking in the lunchroom among themselves, but loud enough for me to hear them from the hallway. All three of them young and healthy, all three of them looking at their latest drug's new development/testing results/data from a strictly clinical selling point of advantages over the old drugs/competition. One young lady put it simply: "where you used to get two years, now you get three years." I thought to myself...smiling as I walked..."you don't have a clue, little girl."

We were so busy at the cancer center yesterday, I had no time to offer these young ladies a different perspective on their drug and its data. I would have LOVED to have said to them:
"I know you're bragging on your drug here, but always remember that in those three years you're talking about, some people "got" five years, some people only "got" one. You have a three year average to talk about today, but in reality, there's a whole new crowd of folks just like me.....waiting for the new drug regimen...not even part of the numbers, yet. People like me who are determined to by-pass the life-expectancy you're talking about. People who are determined to blow that three-year average out of the water. We were not a part of your clinical trials and we are not yet, as long as we are breathing, reduced to an average of life expectancy for your drug. When it comes down to it, ladies, the fact of the matter is you get what you get and that's it. Not one day more, not one day less."

Now don't get me wrong. I wasn't offended or angry or upset by what I had overheard. I think nurse Gail thought it might have bothered me in some way. Had I had any time to sit and talk with her, I would have said: I know this is part of the deal of hanging out with you guys once a week. I know this kind of casual talk about people's lives is just a clinically medical way to receive information and deal with the enormous responsibility of treating the catastrophically
ill. I am totally fine with that. But there is a part of me that wants those drug reps to understand the other side of the fence, that we, the human beings waiting with ready veins and hope for the life-saving or life-extending drugs they sell have not yet been factored in. And some of us will not want to know about the extra year, because we don't consider ourselves part of the mix....part of the data...we were not in the study...and we will have extra years.

After a day like yesterday in the office as a volunteer, when things were crazy busy, and several patients were struggling with their latest turn of events, I was left feeling so downright grateful.
Grateful for the life I live. Grateful for the treatment I have been given. Grateful for the way everyone who has had anything to do with my care over these almost eight years has never once
put me in a box of numbers and results and data. Grateful for a staff of friends who are on the same page with me, knowing that we get the days, weeks, months, and years that we are given by God and that's what we get. No more, no less.

And when you come to realize that about life, when you really get that concept, it can free you up
and let you make your journey through the rest of your life rich, and fun, and meaningful. Despite your disease, despite your circumstances, despite what the drug reps have to say.
We all get what we get and we need to honor God by making the most of it.

"Do not boast about tomorrow, for you do not know what a day may bring forth." Proverbs 27:1

The pill

Can't they just make a pill for it??

If they could just make a pill that for one full day, you could be transported away from the crushing reality of cancer. That for 24 hours you could look at your husband, your children,
your friends and not think: "oh my, how could I ever leave them....let them down....cause them anguish. Why do they have to be burdened? How did this all happen?"

24 hours of normalcy...the old normal....the before cancer normal.
When you worried about your hair and how you looked in a bathing suit.
When your child had not known the fear of "Mommy has cancer."
When there were no questions of why, no thoughts of how could this have happened, and no
doubts about the future.
When you ran three miles on the treadmill and taught kickboxing.
When you still viewed yourself as sexy.
24 hours of no scars. No pain. Great sleep.
A full day out from under the suffocating fact that you are forever-more under some thick type of water, molasses in the winter, slowly drowning inch-by-inch and hour-by-hour.

24 hours without any pills but the one pill to make you forget everything since the first instant you heard your name and cancer together.

The longer I live, the further away I have gotten from mourning my old life that was ripped away with my diagnosis. But I often see other patients whose diagnosis is new and the facts of what they have lost are haunting them. I see it in their eyes, whether they want to come to grips with it or not: nothing will ever be the same again. They will replay their old life and new reality over and over and over in their heads, not able to sleep, not able to yet accept their altered state.

I remember so well a moment I had when I was in between surgery and my very first chemo treatment. We were down on our sailboat, the Slow Dance, for the weekend. Everything on the boat and at the marina was exactly how we had left it four weeks before....but nothing was the same. In a rare moment of raw emotion, I turned to my husband and screamed over and over: "I want my life back!, I just want my life back." I knew this place, this boat, our weekends were never going to be the same. We sold the boat the next month. That part of us gone....a new normal to come.

Over the years since that last day on our boat, I have still lived a great life, a rich life, and a life filled with more joy, love, and faith than I ever thought possible. The new richness and fullness of my life and God's ever-present faithfulness has allowed me to not only survive but become a much better wife, mother, friend, and human being. I am so grateful. But there is still a small part of me that makes me want to look back every once in a while and long for my old life. And for all the things the Lord has done for me, he has not erased my memories or delivered me completely from these dark and heavy waters. I am so saved in spirit...yet I am still fighting against the current, struggling to keep my head above the surface. Cancer has become like constant dark cloud on my horizon. Always within view. Or the constant low hum of a refrigerator....background noise for my life with no letting up, no sweet silence. It is a fact we now always have to factor in...no matter what we have planned or how good I feel.

So if they could just make a pill for us, the ones slowly drowning, the ones who do not know how to keep from looking back and longing for another time, another place, another circumstance. Those of us who feel the constant erosion every day of our bodies and our futures.
Just 24 hours, one more day, to not be the one with cancer on their resume. What I would pay for a pill like that.

I've had trouble

I've had some trouble. I've had trouble sleeping well. I've had trouble waking up feeling icky, I've had trouble with pain after exercise. I've had trouble logging on my blog account. (hence the long absence) I've had trouble getting to church and remembering a meeting. I've had trouble with my car, trouble with my life insurance company, trouble over a disability check, trouble with a few of my dogs, and periodic trouble with my stomach. I have had a slightly troubling trend in my marker numbers. You know what I say? SO WHAT?

My personal troubles over the last few weeks were at one point a major focus in my head...a source of angst, or fear or frustration. I was feeling myself drifting away. Away to a bad place of self-doubt, self-pity, less faith.....growing despair. Questions of the future, the past, the present, the constant mind-swirling of a person like me....a patient like me.
Then two things happened:

1) I had a phone call from a 41 year old woman who was in treatment at MD Anderson (big time)
for metastatic disease with a similar history to me. As we exchanged stories I began to realize that I was getting great medical care, just as many chances, just as many successes, and even more breaks than someone who was flying to Houston TX every three months. Affirmation of something I had always suspected.....there is no better place than with Maha, Janet, and the
girls.

2) I went to the beach. My great husband saw the blues heading my way and put me in the car for an overnight to Wrightsville. Sitting in chairs, where the water just rushes under your feet, we talked and swam and reveled in the beauty of it all for three hours. We had dinner looking out over the intracoastal waterway, walked the docks looking at ridiculously expensive yachts,
slept in late and drove back home. It was so therapeutic. My troubles faded into the background and life, wonderful life came back into focus.

My troubles, in the great big scheme of life, are no different than anyone else's. They are just like anyone's , but they have different names and one has a relentless mission to slowly take over my body. If there is one thing that I have learned over the last two weeks, especially through volunteering, is that everyone has troubles....and God always has a way of showing me that mine are small and meaningless because He will take care of me. This time, when I was about to sink under the weight of all my troubles, God saved me yet again. Through a long, affirming phone call and a chair on the beach in the sun.

"Peace I leave with you, my peace I give to you......Do not let your hearts be troubled and do not be afraid." John 14:27

The article

My sister-in-law called my yesterday. She wanted to know if I was interested in doing a follow-up piece for the Charlotte Woman's magazine she works for. In 2002, I wrote an article for the October, Breast Cancer Month issue, describing what is was like to go through a stem-cell-treatment and recover. I covered areas like how did I come to that decision, how did I get through the tough treatment, and how did I cope?

She now would like me to follow up with a story about what it is like to live with the disease for so long. It will be an article about "the new face of breast cancer." This time, the article will be about how I get through all the tough times...how do I cope...but mostly how do I live.

The article will be a lot about trust. Trust in my incredible medical team. Trust in the amazing ability of the human body to recover from numerous treatments. Trust that the next treatment will leave you better off than the last one. Trust that there is a purpose for you in all this. Trust that this is a life for you to live to the utmost and fullest. And trust, of course, "in the steadfast love of God forever and ever." Psm. 52:8

After volunteering at the Cancer Center yesterday, I had my monthly visit with Janet. I will not know what my marker number will be until today or tomorrow. But I will have to trust, once again, that whatever it is, we have a plan set in place to keep me moving forward. To keep me around and help me live with it. As we sat in the exam room, she had a little trouble entering my treatment option into my file on the computer. This treatment of Xeloda pills will be my ninth chemo regimen since recurrence in 2004. The computer could only take six. Oops.....so sorry to outlive your computer's parameters of possibilities for long-term care and survival. (not!) When you count the five hormonal courses (Tamoxifen, Aromisin, Femera, Fosalodex, Arimedex) there have been a total of fourteen medical treatments for me in almost five years.

Looking back on all that, looking back to times like February 10, 2004, January 2006, July 23. 2007, November 1, 2007.....the times when news was bad and a crack was made in my armour of trust, I am so glad that we.....everyone involved in my love and care....were able to trust in each other and in the Lord that we could all live through it. That I, for some unknown and divine reason have been able to stick around, cope, manage, live my life like always. With faith, enthusiasm, wonder, and trust.

After yesterday's morning of having the privilege of working side-by-side with the wonderful angels in the back treatment room, after my exam with my friend Janet and the computer problem, after the phone call about the follow-up article, I had an hour and a half drive to think about what it has been like, what it means to live with chronic, metastatic disease. I know I will have quite a bit to say. I hope when it is finished and people will read it, it will say all I need to say about faith, love, determination, optimism, trust, and all the people who carry me through my chronic-breast-cancer life. I hope all who read it will see that women are living longer with it, thriving despite it, coping with life just like any one else.

Most of all, I pray and believe that there are and will be many others like me and coming after me who will be sitting in an exam room one day and have to laugh at the computer like Janet and I did and realize that it just might be time to change the parameters that have been set up by that machine...it knows nothing.... and live by the trust we put in the Lord.

Trust in the Lord. That is how I cope. That is how I have come through 14 treatments and all the scans, tests, and news that goes with them. That is how I live.


"Let me hear your steadfast love in the morning, for in you I put my trust. Teach me the way I should go, for to you I lift up my soul." Psalm 143:8

Even Though

"If only we could inject her with all of what we know," I said to the patient outside the bathroom door last Thursday. He and I...veterans of a long road. Both of us stem-cell transplantees, both of us in it for the long road. Both of us fearless fighters in the battle....walking, talking proof of life still well lived, even though.

Even though he and I had gotten devastating news on numerous occasions. Even though we had been treated hundreds of times between us. Even though our lives had been forever altered by the dark and creeping monster. Even though....here we were, standing in the hallway. Worried about another.

I could not possibly make her understand that life will still be lived even though on that day last Thursday she did not believe, could not believe that she would ever feel better, look better, think better than she did at that moment. So sick, so much pain, so much fear, so despondent.

"Fight, fight , fight!", I wanted to shout. I wanted to see her buck-up, get my words, pick up the sword, get mad, get determined and get going. If only we could inject her with the knowledge....

That even though she is so afraid, the fear will lessen.
Even though she hurts, the pain will subside.
Even though she is so weak, her body will recover.
Even though she is sick, a pill will stop that and that feeling will go away after treatment.
Even though she is in such despair, there is hope...of all kinds...waiting for her.
Even though the news is terrible, the future not so rosy, the sun will rise again tomorrow and she can rejoice in every day she is given....for that is all any of us are promised...today, our one day to live as best we can.
And even though she feels alone and in a dark place, there are people like him and me.... one patient hooked up to his IV, one patient volunteering, who know what it is like to come from such a place, to live through such despair and to live life fully.... even though.

I hope with all my heart she begins to fight, dives into the battle, hangs on tooth and nail for every improvement, chance, and possibility, even though she is so weak she can barely stand. I hope she knows that her fight is best fought in her spirit, her soul....the places where cancer cannot touch. Most of all I hope that she knows that God can help her with all of it, any of it, even though, no, no, particularly because she has been told the bad,bad news.

"Therefore take unto you the whole amour of God, that you may be able to withstand the days of evil, and having done all, to stand." Ephesians 6:13

Isn't God Funny?

Oh, sometimes God is funny. He will do just a little something to let you know He sees your efforts and applauds them and He never hesitates to give a gentle correction when needed.
That happened to me today.
I volunteer on Tuesdays at our church's food bank. I am not there to help distribute food. I am there to pray. We offer prayer to anyone who walks through the doors. God has done so much for me, I really just wanted to give back...help a soul...help heal a heart....pray for another....take the focus off me and onto someone else. At least every other person will want prayer for some type of physical healing.
Now let me interject here and say that I am fascinated by medical things. I could sit through an operation, watch blood and guts in the ER, witness practically any procedure...even ones done on me. But there are three things that really bother me: skin eruptions, knee injuries, and eyeballs.
I know, it's weird, particularly the knee thing, but I get the heebies when I see anything medically happening with those three things.

The first day I volunteered, I prayed for a woman with eczema. It was on her arms and legs. I had to confess to my prayer partner how difficult it had been for me to look at her rashes. He just smiled and said that everyone has something that gives them the willies. I did not mention that I had other willy-producers.

Today, our first two prayer requests were for knees. One lady's knee had been operated on so much, most of her kneecap was gone. Her scars were impressive. My teeth were clenched. When the second lady came in, 2 weeks out from a knee replacement, tape still over her incision, I really had to swallow hard and pray harder. It was then that I knew God was up to something.

We took a break and were helping bag cherry tomatoes when I told my prayer partner about the trouble I had with knees.....and oh yes, the soft cherry tomatoes that were too ripe reminded me of my third problem area, eyeballs. We all had a good laugh over my three icky things and went back to our next request for prayer. It was a woman and her father. (You know where this is going) When we asked "what do you want Jesus to do for you today?", the father said immediately, "I've got this problem with my left eye." I could have fallen out of my chair. My prayer partner just turned to me with this divine little smirk on his face. We both knew God was in the room, making a point to me, telling me I had to get over it. Every condition is to be prayed for with no discrimination.

Then, to top it off, when we walked back into the waiting area, the lady with the eczema was back. She wanted more prayer. Her skin was visibly better, and you know what? So was I. No heebies. Thanks, God. I got your message.

"And God is able to make all grace abound to you, so that you may do all things....." 2 Cor 9:8

Hope

Can you see it?
The underlying current,
Sneaking its way around beneath our feet
Whether they are standing behind the glass or out on the treatment floor.
Do you feel it?
As you walk in the double glass entryway into a suddenly somber and
muted place waiting your turn.
Does it wind its way into your mind while in the small exam rooms as you listen to the latest news, get the latest numbers, focus on the odds.
Can you sense it?
Even when the toxic meds are being pumped through your body and you are drowsy from your Benedryl, trying to rest in a restless place of lights and alarms and bustling of feet.
It is there, I swear.
Following around every one you see.
All the doctors, nurses, assistants, volunteers have a trail of it like a vapor behind us as we move through the days of your medical nightmare.
The monster that is cancer that crawls through you and around your life cannot
defeat it.
It springs eternal from the hearts and souls of the people who surround you at the office on Asheville Avenue.
I, for one, promise that I will always be covered in it. Blanketed with it even when words are said to make it disappear. Even when it is gone. For I know where it lies.
I have learned, I have seen, heard, felt, and sensed it for seven years. Without it, nothing would matter and life would be meaningless.
I know of this thing, this integral part of what goes on at CCNC Cary, not only because of what I believe spiritually, but because I can recognize it glowing amid the darkness that is the disease we all loathe.
It shines like a beacon in the middle of a terrible storm.
My girls, in particular, practically reek of it at times. I know they could not do what they do without having a boatload of it.
The next time you are in those offices....look for it.
Look for it in a touch, a smile, a tender hand on a hurtful needle.
Look for it among the charts and graphs and percentages and data.
Look for it behind the serious dark eyes telling you a serious diagnosis.
Can you see it?
Please try to find it, because it is there and it will make your journey so much easier.
Reach out and grab it and never, ever, give it up.
I know I, for one, will never let go of hope.

"Be joyful in hope, patient in affliction, faithful in prayer." Romans 12:12

Unbelief

The man said "but if you can do anything, take pity on us and help us." "'If you can?'" the other man said back. "Anything is possible if you believe." You just gotta believe......how simple yet how very hard. "Help me with my unbelief" the first man begged. Turns out it was the right thing to ask for. And the second man healed the first man's son.

Of course, the above is a very loose translation from the book of Mark, the 9th chapter. But I find it so appropriate so many times. So many times, I too, have cried out for help in my unbelief. Unbelief is a word that almost sounds like a mispronunciation. Most people think of the word disbelief, which of course is totally different...no really. Unbelief is the struggle your mind has accepting something you know to be true in your spirit. Like knowing that you know that you know that God has the power to pull you out of anything, but still having times of doubt, fear and depression. That is unbelief. Disbelief is when your mind cannot accept something that is true in the physical. Say, you experience disbelief over a magic trick you see, a test result you receive, words that are said to you about yourself or someone you know. That is disbelief. That is what I can see in the eyes of The New Ones.

Ah, The New Ones. The newly diagnosed. The newly told. Surrounded by friends and family, eyes red-rimmed. Kleenex wads in their hands and at their feet. An expression on their face like no other. How many times have the girls all seen it? The doctor and NP have calmly spelled out what life will be like from here on out to.... when? The nurse has been on the stool, explaining drugs, procedures, side effects. And there they sit.....first time in the chair....first time in the veins....first time when disbelief gets met head-on by cold hard truth and an IV bag, beeping pumps and blankets, pre-meds and red-filled syringes. But it is still there, lingering despite the reality. You can see it in those red-rimmed eyes. Disbelief.

There were two New Ones last Thursday. As I bustled around, the happy new busy-bee volunteer..."clearly in my element", I was told....I kept my eyes on the faces of the New Ones.
I knew they were too stunned, too scared, too devastatingly heartbroken to really have a talk with them. I would have loved to have gotten the chance to say so many things...but that time will come when they are ready. Because the first day, being New in the chair, you are completely overtaken by everything you have been told, everything you feel, everything you see. Afraid and in a state of utter disbelief.

In time, they will let the truth take over. In time The New Ones become old hats in hats, bald and knowing that they can live while all this is going on. In time they may even start to believe they can live a very long time because they are being treated by the best of the best. Their team will work tirelessly to fight their fight with the goal of sending them down the road with hope and health and love. In time, The New Ones will get over their disbelief. In time, they can be like me, left with having to deal with the unbelief.

In November of 2001, Maha sent me a copy of my tumor marker. It was 27. The first normal reading after all my chemo treatments, and right before my stem-cell transplant. The number is circled and there is a hand-written one-word note from her. It says, "Believe!". How right she was...truer words have never been written from her to me. She knows, because she see it all the time, with almost every patient. Our biggest challenge will not be the physical toll that cancer may take, it will be our unbelief that we will ever be normal, cured, healthy, out from under the cloud of doubt and living our lives again to the fullest. So, if I do get to impart any wisdom to The New Ones, it will be simply this: Believe...and when you can't, ask for help....plead like the man in the story at the beginning of this entry. I plead a lot....still, after all this time and all that has happened....Lord, help me with my unbelief.