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Early Indications

12/30/2013

Art, the kids and I spent Christmas week in San Francisco along with Art's side of the family. It was easier for the 16 of us to gather there in one hotel rather than shuttling back and forth to places to/from the south bay where we live. We had a joyous time ... it was great to see everyone ... but it is also good to be back home, settling into our familiar routine.

I spent all day Thursday and most of Friday at the hospital, and began round two of the clinical trial. I had my routine blood work done and I had my monthly tumor marker blood test done. While there are several tumor markers that may be used to measure the presence of metastatic breast cancer, only one has proven to be reliable for the cancer I have.

The carcinoembryonic antigen (CEA) test measures the amount of a certain protein that may appear in the blood of some people who have certain kinds of cancers, especially large intestine (colon and rectal) cancer. It may also be present in people with cancer of the pancreas, breast, ovary, or lung.

CEA is normally produced during the development of a fetus. The production of CEA stops before birth, and it usually is not present in the blood of healthy adults.

The CEA test is used to:

Find how widespread cancer is for some types of the disease, especially colon cancer.
Check the success of treatment for cancer.
- CEA levels may be measured during treatment with medicines to destroy cancer cells (chemotherapy). This provides information about how well the treatment is working.

The "normal" level for CEA is <3.8. After radiation, my level was 3.1 and all was fine. However, this number has been rising ever since then, never going down. In October, it reached 56.6 and stayed at that level in November. After one month on this trial, my CEA number has dropped 30% to 39.4. It's still far from "normal," but everyone is ecstatic over the drop! This is an early indication that the trial is not only preventing the cancer from spreading, but is killing off some of the cancer in my bones.

It's easy for me to get caught up in the numbers ... they are objective and don't depend on emotional input to evaluate them. They are what they are. I have gotten so used to seeing this number rise, that I've even moved away from being impacted by it. However, tears came to my eyes when I received these results. I feel like I've been given a gentle reprieve from the tyranny of cancer for a while.

The photo is the graph of my CEA trends. It will be interesting to see what they are next month. I will have scans taken on the 16th to get a picture of what's actually happening in my body.

I still have cancer. It's not gone. My health can change at the drop of a hat. However, I've been given another gift ... another miracle ... of perhaps some extended time. As I told Art, I feel like I can plan for this upcoming year without so dark of a cloud over me. I continue to feel well and have plenty of energy. I'm managing the medically induced diabetes as well as it can be managed and I've gotten used to saying, "I'm a diabetic" when ordering food and asking for changes to menu items.

As always, thank you for being a part of our journey. Thank you for walking with us and participating in the ups and downs. I'd still like to challenge us all to live in the present and to not put things off for the future. There's no time like now to be who God wants you to be.

Here's to 2014! May we live and grow in God's love.

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Peering into the abyss ...

12/23/2013

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"Strange as it may sound to modern ears, the contemplation of one’s own death is among the most time-honored approaches to personal transformation. In our day of runaway narcissism it is a practice we would do well to revive. What would happen if you were to die today? If I were to die today? One of the most sobering insights from such a meditation is the realization that life would continue right one without us –and quite well for that matter. The sun would come up the next day. People would go about their normal duties. Nothing of substance would be changed."

The above is a continuation in the practice of solitude as written by Richard Foster in "Celebration of Discipline." It's hard hitting for me because on Saturday, I lost another friend. Dying at age 40, leaving her husband and 13-year-old daughter is something that just "should not happen."

I find myself thinking that we should all stand still in time, just as Michelle will for us. While I firmly believe she is alive in Christ and that she is fully healed now, I struggle with her absence. I struggle that the sun is still shining brightly and that life is so vibrantly going on for the rest of us.

Michelle was a part of a group of 50+ women who came together because of the common diagnosis of breast cancer at a common time (late 2011/early-mid 2012). We were drawn together because we were going through the same treatments at the same time. We lamented side effects, laughed at hair loss, took pictures of hair regrowth, cried at the impact all of this was having on our families.

Michelle's cancer was quite aggressive. She was clear of known disease in November 2012, but recurrences were found in February. It quickly moved to her bones, lungs and liver, never responding to any of the treatments that were tried. On November 7, she decided to stop treatments completely so that she could have some good days before her death. She and her family made some memories and on Saturday, December 21, Michelle left us.

Living hurts. Dying hurts. I'm caught in the middle of not wanting to live (longing for eternity with Christ) and of not wanting to die. Of wanting to make a difference in this world and of just slipping into the quiet. The world doesn't revolve around my existence. The world will continue along without me just fine.

And that hurts. It hurts that my life is going on while Michelle's life on this side of eternity has stopped. It hurts that the same thing will happen when it's my time to pass through the veil as well.

My thoughts went to the book of Ecclesiastes in the Old Testament. It's a sobering book ... going through joys and sorrows. However, the last chapter does summarize things well and helps to provide balance for me.

Honor and enjoy your Creator while you’re still young,
Before the years take their toll and your vigor wanes,
Before your vision dims and the world blurs
And the winter years keep you close to the fire.

In old age, your body no longer serves you so well.
Muscles slacken, grip weakens, joints stiffen.
The shades are pulled down on the world.
You can’t come and go at will. Things grind to a halt.
The hum of the household fades away.
You are wakened now by bird-song.
Hikes to the mountains are a thing of the past.
Even a stroll down the road has its terrors.
Your hair turns apple-blossom white,
Adorning a fragile and impotent matchstick body.
Yes, you’re well on your way to eternal rest,
While your friends make plans for your funeral.

Life, lovely while it lasts, is soon over.
Life as we know it, precious and beautiful, ends.
The body is put back in the same ground it came from.
The spirit returns to God, who first breathed it.

It’s all smoke, nothing but smoke.
The Quester says that everything’s smoke.

The Final Word

Besides being wise himself, the Quester also taught others knowledge. He weighed, examined, and arranged many proverbs. The Quester did his best to find the right words and write the plain truth.

The words of the wise prod us to live well.
They’re like nails hammered home, holding life together.

They are given by God, the one Shepherd.

But regarding anything beyond this, dear friend, go easy. There’s no end to the publishing of books, and constant study wears you out so you’re no good for anything else. The last and final word is this:

Fear God.
Do what he tells you.

And that’s it. Eventually God will bring everything that we do out into the open and judge it according to its hidden intent, whether it’s good or evil. [The Message]

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Resting well

12/20/2013

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Our church is doing a series on "What Are You [Not] Doing for Christmas?" They are addressing how stressed and fatigued people get in the rush of the holiday and are offering suggestions on how to cope. The first week emphasized simplicity, followed by a week addressing the need for Sabbath (rest). Last week encouraged us to seek out silence and solitude.

Personally, I crave solitude. I'm one who can easily drive for hours without a radio on. I can be in my house all day without additional sounds. A walk in the woods and a stroll on a beach are all up my alley.

In spite of my being a public "noisy" person, I am indeed, much more of an introvert than people realize. Large groups drain me after a while and I get re-energized by being alone. I process things better by thinking and writing and not necessarily by talking them out.

This whole topic of solitude reminded me of how Richard Foster wrote of the solitude in his book, "The Celebration of Discipline." This was in his chapter on the formation prayer.

Solitude is the first and the most foundational of these approaches. ‘Without solitude it is virtually impossible to live a spiritual life,’ writes Henri Nouwen. The reason for this is simple to see: by means of solitude God frees us from our bondage to people and our own inner compulsions.

To enter solitude, we must disregard what others think of us. Who will understand this call total oneness? Even our closest friends will see it as a waste of precious time and rather self-centered. But, oh, the liberty that is released in our hearts when we let go of the opinions of others! The less we are mesmerized by human voices,the more we are able to hear the Divine Voice. The less we are manipulated by the expectations of others, the more we are open to the expectations of God.

In solitude, however, we die not only to others, but also to ourselves. To be sure, at first we thought solitude was a way to recharge our batteries in order to enter life’s many competitions with new vigor and strength. In time, however,we find that solitude gives us power not to win the rat race, but to ignore the rat race altogether. Slowly we find ourselves letting go of our inner compulsions to acquire more wealth than we need, look more youthful than we are, attain more status than is wise. In the stillness, our false, busy selves are unmasked and seen for the imposters they truly are.

St.Jerome reminds us that we are ‘never less alone than when alone.’ I invite you into this communion of solitude."

It's hard to let go of expectations we have of ourselves. To let go of the feeling to meet all the expectations of others. To be frank, to think that we can do so is to set ourselves up for failure. We anguish over the perfect gift, the perfect meal, the perfect atmosphere, the perfect experience. We fear that if things aren't perfect then we, personally, are responsible for the emotions of those around us.

We're not. Anything done with love should be considered perfect. We are not responsible for how others react if we have prepared for them with love.

I encourage you at some point before Christmas, to find some time for solitude. Carve out at least a half hour to sit in the moment and to breathe in and relax. If this were to be your last Christmas, how would you want it to be spent? What would you want final memories to be? Frantic haste? Or that of peace throughout the season?

One of the most famous Christmas greetings says, "Do not be afraid! I bring you tidings of great joy for all people! Glory to God in the highest ... peace and goodwill to all." (Luke 2:10, 14)

As we continue through this joy-filled celebration, I hope to keep my eyes on the reason for the joy. May peace fill my heart and yours as well.

Merry Christmas!

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Back in the trial

12/10/2013

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As you know, I was taken off the clinical trial last week due to hyperglycemia (high blood sugar levels). My fasting levels had to be below 100 before I could be put back on the trial medication.

I reached that goal on Friday. I drove back to San Francisco for confirmation of the glucose levels. While the lab values were slightly different than my home meter, they were within an acceptable range and I was started back on the trial at a 25% reduced dosage.

I went back today for an evaluation and determination as to whether or not I could stay on the trial. My glucose levels have been remaining fairly constant and the fasting levels were acceptable. I'm to remain in the trial!

It's important to point out that at no time was I in danger of being denied the established drug. That is my primary treatment right now and I received my second dose of that today. The trial drug is in addition to the primary treatment.

I am relieved and encouraged. The clinical trials team told me how much they want me to stay on this trial due to its promising results. While this trial is new to UCSF, it's in its third year of study and other institutions are sharing information. Things are looking good.

In the meantime, I continue to have emotional ups and downs. I'm mentally exhausted and I've been staying away from my computer and often, away from my phone as well. Forgive me for not answering emails or for not acknowledging messages. I just don't have it in me right now. Mental fatigue spills over into physical fatigue. I'm also emotionally fragile ... I don't know what will set off a crying spell. The holidays are difficult because the shadow of "Will this be my last Christmas on this side of eternity" continually hangs over me. I so desperately want to live in the present, but I swing from the past to the future in the blink of an eye.

I lost a friend from my metastatic support group. We all thought we had more time with her. This disease, once it gets to the vital stuff, can move extremely quickly and can take someone with little notice. To be frank, we all have in the back of our heads, "Who's next?" and I never suspected it would be Franca.

I'm really tired, so I'm going to close now. As always, thank you for walking this road with me.

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Below 100 is the goal

12/3/2013

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No, I'm not talking about my weight (HA!), but about my glucose levels. In order for me to re-enter the trial, my fasting levels in the morning must be 99 or lower. This is the protocol established by Novartis, the pharmaceutical company sponsoring the clinical trial.

I spent three hours with the diabetes clinic today and left feeling very overwhelmed. My situation is very different from most others diagnosed with Type 2 diabetes and most of the information for them just isn't wise for me. Fortunately, the dietician was very understanding, telling me that I had to do what I had to do for my particular case.

The nurse reassured me that there was nothing I could do to avoid what happened. She reviewed my food diary for the week and said that without the trial drug, there was absolutely no reason my blood sugars were so high.

After two days (Monday and Tuesday) on the glucose treatment drug, I am seeing a downward trend. It's *slightly* possible I could even be back in the trial on Wednesday. I'll check in the morning and give them a call to let them know if my levels are acceptable. I have to be careful, though ... the labs at the hospital are much more sophisticated and their readings can be significantly different than my home monitor.

VERY SPECIFIC PRAYER REQUEST: Please ask that my glucose levels reach the desired level by Wednesday, or Thursday at the latest. If they do, I can remain on my current schedule on into Christmas. If they do not, then, quite simply, it messes with everything.

I want to be sweet, but not too sweet! :D

Also, I've been emotional today. For some reason, diabetes seems to be overwhelming. I have enough on my plate without having to worry about it. I don't *want* to worry about it ... I don't want to learn about it, I don't want anything to do with it.

On the Bible front, I'm still writing through Numbers. I found it interesting at the end of chapter 20 when Aaron (Moses' brother) was told he was going to die:

"So take Aaron and his son Eleazar and lead them up Mount Hor. Remove Aaron’s clothes from him and put them on his son Eleazar. Aaron will be gathered there; Aaron will die.

"Moses obeyed God’s command. They climbed Mount Hor as the whole congregation watched. Moses took off Aaron’s clothes and put them on his son Eleazar. Aaron died on top of the mountain. Then Moses and Eleazar came down from the mountain. The whole congregation, getting the news that Aaron had died, went into thirty days of mourning for him."

It seems that Aaron was a ripe old age of 123, but there is no record in this particular chapter of his reaction to the announcement that he was going to die. Was he carried up the mountain? Did he walk? Was he frail and sick? Was he healthy? Was he forced up the mountain or did he go willingly? (It seems that in a later chapter (33), that it says he climbed the mountain himself, so that indicates he accepted the hour of his death.)

It makes me wonder ... am I not accepting the hour of my death? Of course, I don't think I've had a mandate from God saying that it's time for me to die, but this does give food for thought.

Praying for understanding, praying for ongoing peace. Praying about everything, trying to worry about nothing. Sometimes, much easier said than done.

Thank you for walking with me.

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And unexpected (and hopefully, temporary) halt

12/2/2013

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Happy Thanksgiving! I'm just not ready to say "Merry Christmas" yet, so I'm stickin' with the grateful vibes that are still going around. Today's picture is our annual Leaves of Thanks that we put up each year.

We had a wonderful holiday, full of laughter with friends. We have so much for which to be grateful! While my health may not be everything I want it to be, I really have no room to complain. I'm feeling good, full of energy, living a full, complete life. Today is good ... very good!

I drove up to San Francisco this morning, prepared to go for Day 8 of the trial. I've been taking the test drug at home each day, with only mild/moderate queasiness as a side effect.

Imagine my surprise when the medical team advised me that my fasting glucose level was 283 and I was temporarily stopped from the trial! While I've had slightly elevated glucose levels for the past few months, I've NEVER had a number that high ... not even in my gestational diabetes days!

Seriously? 283?!?! I've been following a low-carb food plan since the beginning of October and added a good exercise program in about ten days ago. Yesterday, I had less than 30 grams of carbohydrates and all of them were from vegetables!

The trial drug has elevated glucose levels as a possible side effect. Whew! They weren't kidding! About 50% of the patients on this trial have elevated levels. I was definitely a bit frustrated when my roommate in the trial admitted that she ate donuts yesterday ... and her fasting level was 101! (Ideal is below 100, pre-diabetes is 110 - 120.)

My oncologist prescribed Metformin, an oral diabetes medicine that helps control blood sugar levels. It is a rapidly acting drug and if it helps reduce the sugars back to an acceptable level, I can re-enter the trial on Thursday. Please pray that this drug is effective. (Note: I am still on the established drug and will have that second injection next week.)

Tomorrow (Tuesday), I'll be heading back to San Francisco to meet with the clinician at the diabetes center. That will be followed by a two-hour meeting with a nutritionist/dietician. I am now classified as a diabetic ... a label I did NOT want to wear.

Obviously, the hope is that this is temporary, based on the clinical trial. I will continue to work on the diet and exercise and do what I can from my end. I have been losing weight and I'm hoping that continues as each lost pound will help in this area.

I admit to several emotions today ... disappointment, disgruntlement, frustration and downright anger! I felt them all and came home and walked them off in a two-mile-walk.

Dearest God,

You created my body in your image with a fearfully and wonderfully made mechanism to survive. I once again give it to you, complete with all its frailties. I ask that you heal my body of cancer and of diabetes. Direct the medical team as they continue to work with me to address these issues. Please give me an open mind to hear what they are saying as an appropriate treatment plan is put together.

I pray this in your name,
Amen.

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Early Indications

Peering into the abyss ...

Resting well

Back in the trial

Below 100 is the goal

And unexpected (and hopefully, temporary) halt

God's Story

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