Back in the Saddle Again

I have had 5 good days...very good days. I feel like myself again. I've even gained a couple of pounds.
I met with Dr. Clark today. I start oral chemo tomorrow morning. Though this drug (Xeloda) is very similar in nature to 5-FU, the compounding and delivery system should make for less side effects. I am going to be very closely monitored...I have weekly appts and weekly bloodwork -- and was told ANY symptoms must be reported immediately. After the experience I had this past summer, I will hit speed dial. If there are no problems with this drug, I will be on it for the next 3 months. That's the plan and 3 months is the goal.
The clouds are moving in - maybe we'll get a little shower out of it.
Molly's dog, Scout, is bunking with us this weekend. She and Coco are curled up together for their afternoon nap. Scout will soon make this her new address. I'm joining the ranks of the many who's kids have a dog but are living in a place they cannot go.
Corrie ten Boom had a way with words. Though I have never I lived through the hellish conditions she and millions of others did, Corrie taught us a lot about living through intense pain and suffering. She saw past the darkness and relied on God. The story of her faith lives on.

"When the train goes through a tunnel and the world becomes dark, do you jump out? Of course not. You sit still and trust the engineer to get you through."

I have a chief engineer and on this side of heaven, a great engineer in Dr. Clark.

Now back to tossing out the things Scout brings in from the back yard. Her favorite thing to chew on - wood chips - in the den.

Have a great weekend. Thank you for all of your prayers.

Aunt Irene is in the last days of her life here. Praying for comfort and God's peace.

love kathryn

Hangin' Up Those Walkin' Shoes...

"I can be changed by what happens to me. I refuse to be reduced by it."

---maya angelou

A wonderful surprise and visit with my friend, Michelle and her friend Bill. They flew in from Rhode Island today. They are taking a quick tour of Southern Colorado and some parts of NM while visiting some relatives who now live in CO. Last time we saw them, we all had babies. Now those babies are adults. Swiftly go the years. We just picked up like we saw one another yesterday. What fun. To laugh and share with each other face to face. Delightful!! Perfect timing. Just a lovely, lovely time. And she brought me Portuguese Sweet Bread...fresh from the bakery. yum.
Hanging up my walking shoes? Yep, Dr. Clark's office phoned today. I will see him on Friday. That marks the beginning of my new treatment. Best thing I can say: God is preparing him and me. I am grateful. I now have a good idea of the things chemo can do and have had some advance warning of what this drug can do. I will be given a low dose, so perhaps some of these side effects, I said perhaps, will not be so intense.
I return to the verse I hold onto along
with the Lord's Prayer...your will be done
"I keep a grip on hope."
(Lam.3:21b)
Prayers going up for Irene, Paul, Linda, Neil and Paula and their families. These are long days for all of them.
love you kathryn

I'm Walkin' To New Orleans...

Well, not really...but we do have a lull in the action around here. I went for routine bloodwork and had my standard list of 50 questions for Dr. Clark/triage nurse. I will not start on the next regimen of chemo until Dr. Clark sees me. That's one question answered. The next question that plagues me most all of the time...ok, all of the time. Is my cancer in remission? did I have enough chemo already? And above all else, is there anyway for ANYONE to be able to answer this question...as my CEA levels have been normal from day one. Prior to surgery and to this very moment. The answer to that question - unanswerable. The triage nurse said be careful what you ask for (I mentioned just a slight rise in my CEA then it could return to normal....."don't put that out into the universe", she replied. There is one way: bone marrow testing. Well, that's pretty intense. I am, starting today, working on my mind. I cannot have an answer - don't ask. I am one of the few that this question cannot be answered. They are following me very closely; there is a scan scheduled the first part of August. Time to lay some things down and pick up the plow and move ahead. This moves me into the land of total trust - trusting God completely (however this all works out) and trusting my physical body to people who deal with these things daily.
I'm reading a book, "Talking in the Dark: Praying When Life Doesn't Make Sense. I personally think this book is Life. If your life makes sense, you'd better look again. We are Christians and this life is never going make a lot of sense.
"God alone is the ONLY One in Whom we can put our trust when we are uncertain about the way." (david mckenna). I also appreciate what he said about"isometric prayer"....'sometimes our prayers are like pushing against something that will not budge. It builds our spiritual muscles.' I love word pictures and this one fits so well. I read that right before I heard the 'word' on my inability to know exactly what is going on. I so like paperwork; statistics (though I am not a statistician by any means), I love answers. I can always work with anything - accept anything - if there is an answer. That is not happening. God is holding out his hand; follow me and trust me. Just call me Peter. This is the next step out on the water.


The walkers....Jim and I last fall. (photo by Molly). We've had many long and sweet walks. : )

Losing Track of The Rounds...So it's Round 3 in my book

Beautiful, rainy, cloudy day in Abq. Perfect weather! The garden is happy and so I am; a day the Lord put the sun behind a cloud or two. A break from the extreme heat and a break for those water coolers too.
Tomorrow I start a new drug and will meet with Dr. Clark. Questions, questions and he will quietly, but steadily answer all that he is able to answer. There is no guesswork in the world of oncology. No promises, no glib retorts. Welcome to the world of physics and statistics. I have such regard for him...for all of those who work in the world of cancer.

There is not one patient like another...similarities, maybe, but we are all 'fearfully and wonderfully' made as individuals --- with an amazing genetic link to our past.
I read an old poem last night and will include it (partially) today. You are welcome to read it or skip it.
My aunt continues to struggle getting well from major surgery. I thank you so much for your thoughts and prayers for her. When you are 85, it takes a few extra days to get yourself pulled together.
Say to this mountain, "Go, Be cast into the sea";
And doubt not in your heart that it will be to thee.
It will be done, doubt not His Word,
Challenge your mountain in the Lord!
Self, sickness, sorrow, sin,
The Lord did meet that day
On His beloved One,
And you are freed away.
It has been done, rest on His Word,
Challenge your mountain in the Lord.
I will not write the rest...you get the point.
See Mark 7-24-30/John 14:13
"He seems to be saying 'all my resources are at your command'. And I will do whatever you ask in my name.
Those are such encouraging words and we need constant reminders we are God's children and he waits for us to ask, command and He is most powerful to deliver.
Enjoy your day.
Thank you again Teresa for the input this morning and thank your dr. All of this will be ok...God is right in the midst of all of this.
love kathryn

This speaks for itself...I hope to have plenty of this during this next round of therapy. I do know my Aunt Irene has it in spades.
Get Well Soon!
(thanks Dan for the photo: Santa Fe NM and for Teresa standing nearby)

...enough to make a grown woman cry in public...

I just read this verse and must insert it here...how fitting. From God's heart to mine: "When they walk through the Valley of Weeping, it will become a place of refreshing springs, where pools of blessing collect after the rains!" Ps. 84:6
Teresa & Dan arrived this morning. We had a visit around the old kitchen table and headed out for Old Town. Agenda item #1. Lunch. Very good lunch at the Church Street Cafe. While we were there I received a call from Dr. Clark's nurse. Dr. Clark had his conference call before he headed out for a few days of well deserved rest and relaxation. It was determined I WILL have more chemo. It was enough to make me burst into tears. 18 days in the hospital and 4 more weeks of wondering what was coming next. Would I be told "no more chemo? or would I be told I could receive another drug?" Where would I go if I needed to do a clinical trial? And on and on and on.
These private wrestling with God, the tears, the seemingly calm days when inside I knew a storm was brewing...is it the right time Lord? Are you listening? What is the answer? I have been through enough things to know affirmative answers are not because God is a Santa Claus, just handing out things we decided we wanted from the Sears catalog. God is all knowing, always giving us GOOD gifts...which means to me, appropriate gifts in his will and in his own time.
What I know today: We will begin slowly, with a reduced dosage and I will be watched very closely. I've kept a lengthy and complete medical journal to date and will continue that. It was very helpful when I became to ill to look back and see what all was going on - as chemo brain doesn't not always assist in the best ways.
Dan and Teresa said "she's running on adrenalin today". I am and it felt good and I will sleep well tonight. I'm the woman on the sofa this evening.
My aunt's health situation has not been clearly established, but they are talking about acute leukemia. We are praying so for this incredible Christian servant who we love and care so for and for her family and my mom who lives close by.
Your prayers are greater than gold. I am so very blessed. I'm so thankful Dan and Teresa were here today. That too is a gift from God.
Love kathryn

After the Storm...

Yes, if you wondered, I have had a couple of those dark nights of the soul days. Not many, I'm grateful. Yesterday was one of those days. Waiting is hard work. Wondering if your case has become too much of a burden for the doctors, things get overblown in your mind; God seems incredibly far away - yet who else knows your needs better than our Father?. I read the Psalms of David and know we share with a man from long ago....tears on your pillow, aching to the depths of your soul. I like action. I want to be proactive in this battle. Yesterday --the storm struck deep.
Fortunately, like any storm; this storm passed. When it passes, I felt the same sensation I feel after a spring storm. There is order that comes following a storm. Everything is washed clean. Tears like rain clean the dust and cobwebs and put things back in order. I think those tears soften my heart. Thank God for those tears. They are healthy.
Today, Dr. Clark found out the pharmacologist he wanted to consult with is now with Mayo Clinic. Dr. C. spoke with the pharmacolgist's research assistant today. They scheduled a consult for tomorrow morning. I will probably not hear anything until the end of the day. We are looking for another drug or perhaps a clinical trial so I can continue my treatments.
I am feeling much better after my recent hospitalization. I still have days that I'm quite tired, but I am walking the yard and getting out more.
On a funny note today, I had just sat down for hydration at the cancer center today. Someone burped - very loudly. Everyone chuckled...the lady sitting next to me, after a long pause, said, "Bless you". We all laughed. I told her that was quite appropriate. I enjoy the humor and the way people share their lives and stories. It lifts all of us up. I appreciate the honesty. Not much hiding goes on there. I love the laughter most of all....we all share a very difficult journey, but there is always room for laughter.
My sister and brother in law are coming tomorrow morning. I hope they can get out and enjoy the sights. We are glad they are coming.
Prayers are going out to my very special Aunt Irene. She is in the hospital in Wichita. She's been ill for quite a while and a lot of tests are being run. My mom is staying with her tonight. Praying her doctors will find out what is wrong and help with her pain. These are the pioneer women...these 4 sisters. They love God, serve him every single day and love one another. They are all very different in personality, and together, they are funny, and quite a power house. They all make our lives richer. Get Well, Aunt Irene, I love you.
Enough. Again, your prayers are always welcomed and believe me, your prayers keep me strong and keep me centered. They are powerful. God's Spirit is delivering. Continue in prayer for all things. God loves hearing from you.
So do I!
love, kathryn

Tozer...

I just read this...I think it's valuable, no matter if your life is going by with ease or with struggles. A. W. Tozer's words still ring true to me....

"A real Christian is an odd number anyway. He feels supreme love for One who he has never seen, talks familiarly every day to Someone he cannot see, expect to go to heaven on the virtue of Another, empties himself in order to be full, admits he is wrong so he can be declared right, goes down in order to get up, is strongest when he is weakest, richest when he is poorest, and happiest when he feels worst. He dies so he can live, forsakes in order to have, gives away so he can keep, sees the invisible, hears the inaudible, and knows that which passeth knowledge. What a way to live."

Above all things, guard your heart (your thoughts).....and think about A.W. Tozer's words.

Thank you, Mr. Tozer, I needed that.

love kathryn

(sorry two posting in one day is over the top - however, it is my journal!

Refiner's Fire

It's Friday and still no answers. I don't wait well. Scripture is full of passages on waiting. Henri Nouwen wrote about waiting. It is full of activity, it is full of energy and power. I must hang on to that. I do not feel I am "soaring with the eagles". I feel quite desperate. There just aren't quick and sound answers to what is going on with my body. It's very hard to keep my mind focused on the fact that during this quiet time, there are people working and thinking over this situation. Being a mystery sounds exciting sometimes. And it is. However, when it's your health, sometimes, being outside the box, is not all it's cracked up to be.
I read in Streams in the Desert about the stones on Pebble Beach. They are continually pounded by the elements, harsh storms create these beautiful stones...yet less than a mile away, there is an inlet. The same rock that people come from around the world to see and take home, is readily available. Yet no one takes those rocks. They have not been hammered and tossed about, so they have no remarkable beauty. Anything in life that is of value to us has been through the elements - the beauty, the mystery lies after we have been polished by strong storms or have been through an intense heat. Dain, my son, works with wood. Before he saws and hammers and sands, it's simply a piece of wood; when he is finished, it becomes whatever he needed to create - a shower, a cabinet, etc. Without harsh blows and saws, files, sanding, it would be nothing but an ordinary piece of wood.
God loves his creation; he provides, he even sends us through the elements to refine us, increase our need for him as well as our love I am learning to trust his will in my/our lives. It is hard work...this refining fire.
I go back to the Psalms daily...but this one verse just keeps standing out to me...

"Be Still and Know That I Am God."

Refine me, God, as I go through this particular fire.
Down a bit today...never out...never. I'm in the fight. We will win!

Reality

I did have a milkshake today. I do still feel the effect of that in my throat, it's getting better and it was certainly worth it. Tasted very good!
Dr. Clark: Today was a meeting to see how I was recovering from the toxicity to chemo.
Questions answered: I can never take Oxilaplatin or 5 FU or its dirivities again. I have two enzymes (a jillion numbers and letters, so I didn't get them written down) that work as enemy agents against those two drugs.
With that piece now a known, what is next? The goal is to complete chemo. The question: what drugs are best with the least side effects? That is not answerable as of today.
He is consulting with research doctors and will get back with me by the end of this week of the beginning of next week. There are more things available in his "bag of tricks". I so appreciate he is consulting with others who are are on the cutting edge of chemo treatments.
The other questions I have: how many people have this? Not many. There are just not enough of us to have a lot of information to share. This situation is "Very rare". (ah! just like me! ha)
He did say my blood work is great and I am ready for more chemo. I almost completed 50% of my treatment. Jim and I both read between the lines, you need to complete chemo if at all possible.
I have two spots on my liver that are very small. If I cannot take any more chemo, I will have a scan to evaluate what they are. No one in the hospital or at Dr. Clark's office has ruled out cancer, nor have they ruled that it is. The spots are simply too small to make a determination.
The next question, how do you determine if the cancer is in remission at this time? My CEA levels have always been normal, meaning they have never shown any signs of going up. My question is will my CEA ever indicate cancer? Unknown. So the game plan now: IF I can receive more chemo, scans will come after chemo. If I cannot have more chemo, scans will begin pretty quickly.
I was channel surfing recently; I saw one of the Harry Potter movies was on. I love the crazy bus scene in this movie. Harry gets on the bus, believing it was a regular bus. It is anything but a regular bus. There are crazy characters everywhere. At one point this bus is heading right for two buses, coming in their direction. The bus squeezes itself between the two buses and comes out on the other side. I was thinking about that ride and how very similar my ride through this past few months has been like that bus ride. Many characters, many perils and dangers, some laughs and tears. Harry does made it out of the bus and back to school. Maybe a poor analogy, but it seems to fit to me. Nothing about this has been in the norm.
I pray that these good doctors will find a cocktail of drugs that will work for me; that I can complete chemo and most of all that we find no sign of cancer. If I cannot complete chemo - well, I will finish that sentence when I find this to be the fact. Until then, I turn to God, asking him to continue his faithful walk with us and most of all that we will continue to trust and walk with Him. Though I want answers and for things to start up immediately, there is great wisdom in caution. Dr. Clark's intent and will is to heal not harm. I have to slow down my 'hurry up' brain.

"Hasten slowly."

--Augustus Caesar quoted by Suetonius 1st century A.D.

I'm going to have to learn to live on "Bahama Time" during these days. Back to the Navy years - hurry up and wait.

Monday morning. Beautiful blue skies and cool breeze. This won't last long as it will hit 95 today.
I feel like I'm getting ready to go on a big trip - anticipation, some tears, a lot of mental preparation. Anticipation of a doctor's appointment tomorrow. I have many expectations - exact answers, what caused this in the first place, a plan of what we will do next. I heard over and over my situation is rare; there are not studies on this, there are simply not enough people in the population who become toxic to chemotherapy. Since chemo itself is "toxic"...that is pretty amazing -- that so many can tolerate it and find success.
Our constant prayer is that the cancer was killed by the amount of chemo I was able to take...that this will be the end of the the need for chemotherapy. AND all that will remain are check ups, every 3 mos until I reach the "once a year"stage. That is our prayer.
We come again and ask for your prayers in regard to our meeting tomorrow. That we will understand what we need to understand and there is clarity and most of all that we will lean on God for all of these things we need. Oncology is out of my league. I have to listen very closely. Pray for us to discern what is said. Dr. Clark is meticulous in his research, he doesn't play fast and loose. He's cautious and yet aggressive. I have such regard and respect for him. Please mention him in your prayers - for wisdom.
We enjoyed a great week with Lisa. She was at the ready, allowing me to rest, and being a big help on every level for Jim. She made wonderful summer time meals and kept the doors flying open for Scout (Molly's dog), Coco and Sophie. They are a bit lost today. No Lisa and no Scout. I cannot thank you enough - ever. You are a blessing to our lives - always.
I'm feeling stronger everyday. I am taking advantage of the week to rest and continue walking the perimeter of our yard. I'm eating better and waiting for weight to show up on my body and for the numbers to increase on the scale. I know when it starts showing up, I will be more steady on my feet.
I developed orthostatic hypotension (meaning normal or low BP at rest and as you get up, the BP drops causing dizziness, lighthead, and fainting. I have joined Molly's world. I hope this is something that will resolve in time. Meanwhile I'm drinking my electrolytes and receive hydration.
I just read a piece on trusting God while in pain. That is a tall order yet Paul speaks to this often. We don't know anything past the moment we are in; trusting God has to be learned and adhered to...He does know our lives and views all things with eternal perspective. So I'm working on giving God thanks for all circumstances in my life. Again, a tall order, but God is faithful and His Spirit leads. I only have to listen and follow, believing God does know what He is doing in all areas of my life. (Phil 4:6, I Thess. 5:18)
Wishing you a wonderful day wherever you are and whatever you are doing.
Molly turns 20 this week and will leave for college in Lubbock 4 weeks later. A lot of changes in our lives. I've got a lot to learn. I'm ready.
love kathryn

I didnt' realize when I put that quote in my last posting, I would be called upon to live it out - to get to the other side. I have a way to go yet, but I will make the best of it.
Three weeks ago, I was dragging to just get out of bed. By Thursday, I couldn't get out of bed. Friday, I went to see my acupuncturist but felt worse after leaving. By Saturday, late afternoon, I some pain in my abdomen. It wasn't constant but it was one of the things on 'the list'. Call the doctor. He then told me to go to the E.R. I don't remember much about the first week in the hospital other than I was very sick. Many tests were being run. A lot of people were praying and sitting with Jim and my mom.
First we learned I had an ischemic colon...meaning, the piece that was reattached, never found a new blood supply; that part of my colon suffered a stroke and quit working. I was told I had an "angry colon". After a few days on antibiotics (for an infection in the small bowel), my colon was not as swollen and is looking for that blood supply. ah ha! that is the reason for all of my bowel problems.
We learned that the root of all of the problems are related to chemo. It "cooked me". They discovered, I cannot take anymore chemo. My body has two enzymes that created this problem.
I don't have any further information. I had a great many questions for my oncologist in the hospital. His answer was always the same (he is very consistent!) "after you get well, we will talk." I see him on July 13, so hopefully will have answers for all of our questions.
I did find out, this is not common and there are not studies for people like me. Since the beginning of this journey, I've heard "you don't follow the norm"; "you are the exception" many, many times..as much as I would like to follow the norm in all of this. As my dear friend, Matt said, "you are an alien." I am.
Usually the doctors assess the increase or decrease of cancer according to the CEA levels in the blood. In my case, my CEA levels have never suggested I had cancer. They are normal and remain so. The only way they can know if this chemo did it's work or not is from very specific blood work. So we are praying that it did what it was supposed to do and that nothing shows up in my vascular system. The worrisome part - if it comes back. Treatment options would be extremely limited.
So we pray and my job is to get well. I've lost 24 pounds. I have a lot of eating to do and I'm not quite up to speed yet. I'm weak and fatigue hangs on. I'm looking forward to being able to wear my clothes again. Hard to keep my pants up!
My mom has been here for the entire time. She's sat many an hour in the hospital. Thank you mom for being here for me. Jim was the wonder man, keeping up with his work, running Mom back and forth and visting me every day. Remember him in your prayers. Caregiving/taking is very tiring.
Mom will return home on Tuesday and Lisa, our friend from Tucson, will stay next week. I am expecting a big turn around this week, but take it one day at a time.
Your thoughts, cards, prayers, support, visits, encouragement has been overwhelming. Jesus' light was all around me due to you....each one of you.
A very Happy 4th of July and a great many thanks for all who serve or have served this great country of ours.

I can do all things through Christ who strengthens me.

Get Well Jeff!
love, kathryn