Paint on a Face

It's time to paint on my face.
It's time to walk outside into fresh air.
It's time to stop feeling sorry for myself, stop wasting time, stop the darkness from becoming so prevalent.
It's time for a ball cap and earrings.
It's time to stop by the church and say hello.
It's time to realize that whatever is going on with me, I still need to be a good steward, honor God, not spend time in needless, mindless sorrow.
It's time to live again.

I have spent the last month trying to second guess a hormone treatment that has caused me more pain, frustration, and doubt that anything we have tried over the last eight years. The real kicker here is that we don't know, won't know if it is working until I surrender to that ever-looming blood test and series of scans I believed the past month would offer relief, respite, recovery. Instead, I have suffered from aches, pains, chills, nausea and such terrible malaise that it is frightening. Middle-of-the night "episodes" that I cannot explain and make me yearn for a hospital. Daytime ickiness that keeps me on a sofa. The constant dizziness of lack of confidence and impending dread that this could be disease progression and not hormonal manipulation has been exhausting and defeating. Trying to stay the course through the roughest course yet.

But the funny thing about the trials of the last month is that life kept on going. Exciting times are still happening. God and my husband still love me through it all. My daughter graduated and found a full time job with a company she loves. Soon she will need my help moving into and decorating her new place to live. We are going to Florida next week. I just got back from the beach. Life goes on with or without me and it's time to jump back in the game.

Time to paint on my face...color in eyebrows, pretend I have lashes.
Time to put on dress pants instead of sweats.
Time to pray and ask forgiveness for my loss of faith.
Time to face the music and play along.
Time to walk in the sunlight of a beautiful day.

The Light Within

In the book of Matthew, Jesus tells us that we are "the light of the world" and that people should not "light a lamp and put it under a bowl" but rather we should put the light "on a stand" to "give light to the everyone in the house." (Matthew 5:14, 15)

I have always hoped that I did this during my journey through this cancer-ridden battle. I took these scriptures to heart in trying to encourage, uplift, and help those who are like me; those who are dealing with the relentless beast. To bring some small light into a sub-world of fear, pain, sickness, struggle, and confusion. To be a beacon in the night, was more than I could ever pray for, ask for, and hope to accomplish. It is the whole goal of my journal, the true purpose of baring my soul.

But there are times, my friends, when I know you all can sense that my light is dimmer that normal. There are times when I don't write because I am tired of it all, or too busy concentrating on my family and other aspects of my life, or, like the past two weeks, times when I retreat inside myself.....allowing to be pulled toward the darkness.... putting my light under a bowl so no one can see. The past two weeks have been my toughest since stem cell. The past two weeks have been a daze of pain and nausea and dizziness and weakness while my body adjusts to a new treatment plan. It has been both frightening and upsetting. I felt like I have fallen so far so fast into darkness, weakness and despair that it was going to take a miracle to pull me out.

And then I remember the light. The light within me. The light that has always been there. It is a small flicker today, but I know that I am better this day than one week ago. I believe I will be better tomorrow than I am today. Our hope and prayer is that estrogen is going to become my friend, that disease progression will stop without the use of chemo, that I will grow stronger and the light will once again go from a small flame under a bowl to a bright beam on a stand for all to see.

As I navigate my way out of the darkness this time, I will be putting the light back on its stand.
Slowly but surely you and I will begin to see the brightness grow, the flicker become a flame,
the hope return. Forgive me for keeping it hidden these past two weeks. Just know that whether you hear from me or not, the light within me is always there. It's just that sometimes it is hidden by the enormous blackness that we in the fight have to wade through every day.

Time to Bloom

Hey guys,
Sorry for the lack of communication. There has just been too much life going on lately. Good and bad, happy and afraid, proud and deflated, the last two weeks have run the gamut. Oh and then there's tax day.

When I get a call on Friday afternoon and it's Maha, not Janet, it is never a good sign. But she knows that not knowing over the weekend is far worse than hearing that you latest round of chemo....the chemo that has put you in the bed, taken your hair, made your eyes permanent water spouts, taken a fingernail and a toe nail, taken away days of you life because you couldn't get out of bed...THAT chemo...has ceased to do its job and the numbers are on the rise again.
As disappointing as that may seem to most, in a way I was relieved. Relieved to not have to wonder if stopping Taxotere to try the Estrogen manipulation therapy was the right thing. It now became the ONLY thing. Relieved to know that I had a chance to try to help my body recover in any way it could, while I am off chemotherapy. Relieved, for just a while, to have permission to give up the struggle to past 3 months have presented and focus on something new
and maybe tremendously beneficial. Relieved to be able to fight in another way other than just getting through the side effects, being stuck and sick and tired.

Now I am taking three pills a day. Now I will get one IV a month. No we pray harder than ever, because we are again being pioneers in this world of chronic advanced breast cancer. Now is the time of spring, the resurrection, new growth, birthdays, graduations, sunshine on my face, time to bloom.

I wanted to start the pills yesterday, on Easter and also my husband's birthday, but he asked me to wait until today. He wanted a great day with no thought of what we were getting ready to dive into. He wanted to keep his day and Christ's day and a day spent with our daughter and new boyfriend separate from "Day 1" of Estrodial.

So day 1 is today. I am ready. I am hopeful. I am absolutely firm in my trust of the Lord and the plans He has for me, as well as the medical plan that Maha has laid before me. Even so, I ask all of you, as always, pray......without ceasing. Lift me up and keep me strong, my friends. You always have.

"I will sing of the Lord's great love forever; with my mouth I will make your faithfulness known through the generations.: Psalm 89:1

This Is What We Do

Stepping off of dry land. Back we go, into unknown waters. Molecular studies have been done on the cancer cells from my lung from the 2004 recurrence. Hi-tech/Sci-Fi print-outs of the make up of the enemy. A lot of information about the enemy. Recognisance run in a lab out in Arizona. We now have a better idea of what the cancer that roams around in my body may or may not respond to. It is fascinating. It is frightening. Such a resistant little devil, is the cancer, to most chemo agents. But not to all. One new name pops up that I have never been on. Some old names come back as surprisingly ineffective when we know it is not so. The real direction of the study, the deconstruction, seems to be hormonal manipulation. Something that was discussed in San Antonio this past December. Something Maha and I had talked about. Something we are going to try.

I seem to be the perfect candidate for this new course of attack. But it will mean stepping away from the chemotherapy and trusting a new theory of re-introducing the enemy to the one thing it craves the most....estrogen. Then we will snatch away the "candy" from the cancer and hit it with an aromitose inhibitor. Stop all the estrogen cold turkey. And like a reformed alcoholic who has fallen off the wagon and been drinking for days on end, when we remove the bottle, take away his precious source of addiction, we hope he (the cancer, of course) will have withdrawal so, so bad, that he just shrivels up and dies. Interesting approach, don't you think?

When I was standing in the office with Maha and chewing on all this stuff, I just kept trying to grasp the concept. Something new. Something that won't tear my body apart bit by bit. Something that will not require an IV infusion once a week. Something that won't make me feel like my bones are on fire, my tongue is splitting in half, my hair won't stay or food tastes like metal. Something different, exciting......scary. So I looked at her for a good 15 seconds. We just stood their looking at each other, nothing more to say. Just the unspoken understanding that I finally put words to. "Well," I said. "This is what we do."

She and I, Maha and Kathy, we will try anything and everything to keep the monster at bay.
I know without a doubt that she always has an ear out for what is new, what may help me, what the next step might be when needed. And she knows that I will be a willing partner, that I will believe in what she believes in when a new treatment starts.

So we are off on another adventure. We are stepping into unknown waters. We are excited, yet cautious. But our hearts are the same, our hopes are the same, and our dreams are the same.
How did I find a doctor like this??? Whenever you doubt about the perfect plans of God. Let me remind you about odd couple at 216 Asheville Ave. The devout Christian patient and the devout
Muslim oncologist. Eight years of standing beside me. It's perfect proof of a perfect plan.

"But those who plan what is good find love and faithfulness." Proverbs 14:22

Finally, someone has an idea!

"You have no idea". How many times have you said that. If you are like me: a chronic cancer patient, been in the fight for years, always being hunted and hounded by the enemy, then you know what I'm talking about. People will ask you...how do you live with it??? I write about it all the time....living with the knowing. I describe the constant drone of my diagnosis as suffocating,
being held under water and let up to breathe every so often, just enough, just for a moment in time, to keep going. I describe it as a daily battle and part of a war. I describe it as a path I have to walk....I have no choice....no matter how crooked and hilly the path gets. But someone wrote a description in Cure magazine that I saw on their website and they hit the nail on the head.
To paraphrase, the woman was talking about what it is like to live with a Stage IV diagnosis and she described it something like this: It's like having a radio constantly playing in your head that is distracting you from life. You can never turn it off. You can only learn to turn down the volume.

I am not a crier, but those words brought tears to my eyes. Because that woman knows. She knows what it is like to live my life. She does have an idea of what it's like to have the constant cloud of cancer as your companion. And she found a way to describe it perfectly.

And so the radio plays on. There are some days when the volume is way up and I can't make the noise fade into the background. But most days, I make it a point to turn the volume down and listen to the sounds of life and the living. I am sure that this woman, like me, longs for the days when the soundtrack of her life played only the music she wanted to hear. Now we have
that irritating type of music you hear in the elevator. The kind of low-playing garbage that makes you want to hurry up and get off on your floor. If only we could........

So now, you of the undiagnosed and healthy, have an idea what it's like.

Clinging to small things

The things we cling to. I have to admit, sometimes they are so trivial, and yet they are so important. I met with Maha last week. I confessed that I was not tolerating the Taxotere/Xeloda regimen as well as I had five years ago. The doses must be different, I said. Five years ago, I did not get this tired, I did not have trouble with my mouth hands and feet, I did not lose my hair. I could barely tell I was getting anything. What is different this time?
The doses are slightly stronger...but mainly my body is getting tired of all the chemo. All the drugs...so many rounds of drugs. I have stopped counting. And now I have a brand new side effect that I had been complaining about for weeks. I told Janet, now I told Maha. My eyes will not stop watering. It is such a small thing but so irritating. Imagine what it is like to look through your tears about fifty percent of the time. I am constantly wiping, dabbing and blinking.
Maha told me it is a side effect of Taxotere.....(wow, really???I had no idea)... but it could also be that because I had no eyelashes that dirt and dust was........"No!" I stopped her right there. I HAVE EYELASHES! They are just so wet and clumped together you can't see them. But if I put on mascara, they are there!!

She just nodded and I felt stupid, becuase I am clinging to my eyelashes. I am also clinging to my eyebrows. I am losing the hair on my head with a slow and determined shed. I have had my head buzzed to 1-inch all around to keep it from hurting so much. I have a re-styled wig ready to go......but I am clinging to the fact that I will keep my eyelashes and eyebrows. I know it is impossible to fool anyone with even the best wig if you don't have eyelashes and eyebrows. They are a small yet strong source of vanity for me. Keep them and I can look healthy to those who don't know me. Eye make-up stays in place; wig-bangs can be brushed aside without the fear of revealing no brows. Here I am, after so many years, so many side effects, so many lessons learned, so many turn-arounds, miracles and medical wonders......clinging to a pitifully small number of eyelashes who are hanging in there despite all the drugs. Tiny little soldiers lined up in the relentless rain of unchecked tears. The metaphor seems to sad to even write about.
So as I sit here today, the 23rd of March 2009....one week before my daughter's 22nd birthday,
3 weeks before my husband's 54th and 6 short weeks before my daughter's college graduation,
I feel foolish for the importance I have given to those eyelashes. I should feel nothing but gratitude and love and faith. When it comes to clinging, I know I should be clinging to big things, really important things...the one BIG thing. Like the Psalmist David wrote from the desert:

"Because you are my help, I sing in the shadow of your wings. My soul clings to you; your right hand upholds me." Psalm 63:7-8

Again, I just need to remember. Remember that when I am clinging to the small things out of
vanity or stubbornness or fear, I need to let go and cling only to the Lord. And I need to sing in the shadows.

This Mountain of Sickness

What a description. I do a lot of "sporadic" reading. I have books, pamphlets, and journals where I pick up nuggets of inspiration, ideas, hope, direction, and prayers. I have rarely completed an entire book on healing or blessings or living strong and long. But I have certainly gleaned so much from these books. Their little sayings, attitudes, mantras and prayers are what help me start and get through each day. I have learned that God will usually make something leap off a page and hit me between the eyes that is so relative, so exactly what I need for that day, and it is so perfect that it can only be His words for me.

In a little devotional book on healing by Joe McIntyre, I found two sentences that I cannot let go of. They are my latest song, my latest chant, my latest prayer. McIntyre takes healing scriptures from the Bible, then gives you a daily prayer to say that goes along with the scripture.
In expanding on Proverbs 12:18, the author gives a long prayer to use on speaking health to yourself. I do this quite often, but two sentences in his prayer have stayed with me for over a month, so I thought it might be time to share. They go like this:

"The mountain of sickness is being removed and cast into the sea. It is being plucked up by the roots and thrown out of my life."

Notice how the author takes such a large thing (mountain) a reduces it in your mind to something small enough to be "plucked by the roots"....like a weed?
Cancer is so like this metaphor. Sometimes the disease appears on my horizon as a huge mountain. A mountain of fear. A mountain of pain. A mountain of treatments, tests, and uncertainties. A mountain so large and looming that there are days I have to turn away from it.
Crawl away from its shadow....hide from its enormity.

But if I follow through onto the next sentence and think of the mountain being plucked away like weed from a garden and thrown out of my life, it is so much easier to face. Bit by bit, weed by weed, no matter what your circumstance or diagnosis, aspects of cancer can be plucked up and thrown into the sea. Like your garden in the summer, you have to be ever-vigilant to keep up with the weeds. You have to pull at them everyday. If you don't, the weeds take over....the mountain looms....the enemy advances. But if you can just think of plucking the weeds for the day and throwing them away, you can weed out the fear for the day, the pain, the advancement, the uncertainty....for that one day.

So get out there people and pluck away....a little each day. Then the mountain of sickness won't be such a looming giant. Weed your garden, visualize the base of the mountain being chipped away....every day. Stand in the sun and ask God to help you rid yourself of the weeds. Speak it, pray it, sing it, chant it. He will hear you. He has on His gloves and will help you pluck. He will.
He has to. For He alone is the Master Gardener. And he is much much greater than our mountain of sickness.

"...but the tongue of the wise promotes health." Proverbs 12:18