Why We Should Pray Without Ceasing

"Not only does sin hinder prayer; prayer hinders sin.

The two are always opposed.

The more careless we are about sin, the less we will pray.

The more we pray, the less careless we will be about sin.

Both sin and prayer are powerful forces.

Which one is moving you?"

- Dr. Alvin Vander Griend

An Update & Request for Prayer: August 21, 2010

By the grace of God, He pulled me out of the ICU and planted me firmly in my own bed late last night! I was able to wean off of oxygen yesterday and my wise physician knows that I am safer at home - it separates me from exposure to more infections in the hospital; I sleep and rest better at home (much needed for my recovery); and the main IV drug to treat the staph "happened" to have an oral version that is equally absorbable. I made the transition from IV to oral Zyvox and was sent on my way.

My cough has improved but is still present and my temperature has returned today. The IV steroids that I required this past week for adrenal support, again, made my sugar levels out of control, so I have been receiving insulin. We arrived home late last night and I knew I needed to check my sugar and in my drug haze, I could not locate my monitor. So our best friends came to the rescue and brought a glucose monitor and strips up at midnight to me. I was so exhausted. Kevin and our friends prayed for me and they said I fell asleep while they were praying for me.

We will have to monitor my blood counts closely for the next couple of weeks - this Zyvox drug has multiple warnings for its use with patients with marrow suppression (ME). It can induce lactic acidosis which can be very dangerous, so we will be alert for those signs. I have to follow a strict low tyramine (amino acid) diet with Zyvox also.

Just as I began to have a moment of celebration of being discharged, my trusted oncologist of many years called me. He has supposedly retired :-) but has checked in on me most of this week from Maryland - even calling Kevin at 5 AM on the morning I was admitted. I can always count on Dr. M to be forthright and honest with me - traits I appreciate in my physicians. Although sometimes the truth is a challenge to digest, I believe it is imperative that no one sugar coats what might be ahead for me. He encouraged me that my family doctor and I need to begin some dialogue about my being putting on a ventilator in the future - because he stated, "Stacie, it is not a matter of IF you will be on a ventilator, it will be a matter of WHEN you will be on a ventilator." I realize that I have miraculously survived two serious lung infections in ICU in two months - a fungal infection and a staph infection. Just as easily, either of these infections could have taken my life.

It is never easy to consider, ponder and discuss end of life strategies, but I am making efforts. I have been walking around with my files with my living will, will, medical power of attorney, funeral plans, etc. for the most of the summer. I will pull these files out and try to put into words some of the most daunting planning that I will ever be asked to complete. The work has been difficult and often brings tears. I will persevere and finish these tasks as I will not leave decisions such as these for those I most love to make.

Fortunately, my nurse yesterday was Lissa. She is a 40 year veteran of that ICU department and she has cared for me for over a decade. She had a frank, open discussion about end of life strategies with me and answered some questions on ventilators, etc. for me. I know that God allowed her to be with me yesterday when I was faced with those considerations.

My NIH oncologist also told me that the splenic irradiation has been tabled for now. I knew in my heart that to begin the irradiation with infections present would be suicidal. I had hopes that the irradiation would offer some relief for me and possibly reduce the tumor load. However, I cannot risk killing myself to achieve those goals. Once again, the leukemia roller coaster is racing up and down so many hills, making swift turns from one concern to the next, and I am barely holding on for dear life.

Monday, I will return to the Cancer Center at 8 AM for my all day IVIG infusion. It will be difficult to do right now with feeling so poorly, but my doctor feels it is mandatory to have that immune support while I fight staph in my lungs and I agree.

Yesterday while I was at the hospital, my Dad and Mom came with the traveling version of a Cancer-versary party for me - a decorated tree with "14" decorations on it (since it was my 14th Cancer-versary this week). They had a plate of cupcakes and a beautiful praying hands necklace and journal for me. Thanks, Mom and Dad! I couldn't eat the cupcakes with my sugar running high from the steroids, but my nurses enjoyed them.

Your prayers are treasured.

5513 Days

5513 days. Fourteen years ago today, I was diagnosed with leukemia. In many ways it seems that I have endured this battle my entire life. I close my eyes tightly, focus, and my mind's instant replay cannot locate a memory of how it feels not to be sick or in pain.

That steamy August day will never be forgotten. I can envision myself preparing for the appointment and singing over and over the chorus Sanctuary:

Lord, prepare me
To be a sanctuary,
Pure and holy
Tried and true.
With thanksgiving,
I’ll be a
Living Sanctuary
For You.

Driving into the cancer center’s parking lot, those lyrics still replayed in my mind. To lift my feet to walk into the office felt like I had lead feet. The racing of my heart reached a crescendo as the doctor ever so callously handed me a sheet of paper.....highlighted in yellow were the life altering words: Diagnosis: Leukemia. The words, “NO! NO! NO!” resounded in my mind but could not locate the pathway to my lips.

On our 20 minute drive home, my husband and I had to quickly decide what we were going to say when we pulled into our driveway to face our three young daughters. I knew without hesitation that we must tell them the truth. John 8:32 instructs us: “…..and the truth will set you free.” I detest lying and I never lied to my daughters, I was not going to be a mother of deception and most importantly, I was assured that “All things work together for good for those who love the Lord and are called according to His purpose (Romans 8:28).” Even on this darkest day, hope and goodness would emerge.

God has answered that musical prayer I sang repeatedly that morning of my diagnosis. He prepared and continues to prepare me to be a LIVING SANCTUARY FOR HIM. He has given life days and years beyond what anyone predicted for me. Just this morning, my nurse asked me how I have the peace and hope that I do in the midst of such a medical prognosis of having “months to a year” to live. And I replied, “Because I know how wonderful my eternal destination will be!”

Would it have been easier not to have trudged this path? Most definitely.I have had thousands of blood draws and painful tests and procedures. I have traveled tens of thousands of miles in search of the world’s best doctors. I have nearly died multiple times from numerous infections and drug reactions. And I have read and researched thousands of pages of medical journals, textbooks, and studies.

Yet, if I had not walked down this dusty trail, I never would have known the depth of the love and relationship that I have with my Heavenly Father. I read this quote this morning, and it is quite applicable to my life passage:

"Perhaps one reason God delays His answers to our prayers is because
He knows we need to be with Him far more than we need
the things we ask of Him."
- Ben Patterson

God has answered uncountable prayers for me. A brief recap would include the multiple times He has reached down and grasped me from death’s claw. Also, He multiplied those 3 years I was told I would live when diagnosed into 14 years of life to watch our daughters grow, graduate, marry and to become a Grammy. He allowed me to mature and age from a 32 year old young mother to an almost 47 year old grandmother with a few grey hairs and tiny wrinkles. I would have applied moisturizer if I had known that death wasn’t going to knock at age 35!

God, the Potter, has taken the lump of clay known as Stacie and has molded and refined me through these trials. He knew trials such as these can devastate people without faith, however for His children, God knows that life’s fires refine us to be more like our Heavenly Father. Until I breathe my last breath, I pray I will grow to reflect my Savior more and more.

I am certain that this topsy-turvy voyage my family has sailed together has been life altering and challenging. I am also certain that nuggets of goodness have emerged. GOD will allow GOOD to emerge from tribulations when we remain obedient, faithful, hopeful, joyful and grounded in Him. Some of the golden life nuggets that I have witnessed from our family’s journey include …..

Our oldest daughter is a nurse (almost Nurse Practitioner) and her nursing skills are a reflection of all the exceptional nurses who have cared for me and are void of the nursing skills that lacked in compassion and competency. Her patients’ families often comment on the care that she extends to her patients’ families. For many long years, she was that young daughter who sat in the hospital with me. She understands the needs that families possess and the needs of her patients. She has battled a lifetime of congenital heart disease and I see her with the same passion for research of her condition and advocacy for the disease on even the national level as her Mom possesses.

Our second daughter (by only three minutes) has strength and determination and fortitude as she copes with her own health challenges as a Type 1 diabetic. She, too, researches her disease, locates reputable physicians, and engages every resource available to her. I hope that something I have implemented as a chronic disease patient has touched her own spirit. She has translated her own trials into her work with many other diabetic patients as a Registered Dietitian. Young, newly diagnosed diabetic patients have often been touched by our daughter’s own experiences. Recently she told me of a young girl who was brought by her mother for a consultation with our daughter. She, too, had been diagnosed as a Type I diabetic and was full of anger and frustration. Her body language told our daughter that she was angry to be in her office. After our daughter shared her own journey and the young girl could see a successful, beautiful diabetic living life fully, she softened. And when the consultation ended, she told our daughter, “You are the coolest dietitian I’ve ever met!” Another life changed.

God chose a different life path for our youngest daughter. As passionate as her twin sisters are about their medical careers, our youngest daughter cannot look at blood, despises all medical procedures and followed a career in marketing and advertising. She has gained a heart of compassion through our journey. She is touched by the homeless man on a bicycle with his homeless dogs and offers a drink or money. The young widowed father with small children stirs her spirit as she watches them lose their mother to cancer. She arranges a trip to an amusement park for them and pays for them to go. She is touched by the mother cat with baby kittens who arrive at her backdoor, cold and hungry. And as the mother of our Lil Man, I see her love, dedication, passion, and care of him to reflect the same mothering attributes I felt toward our three daughters.

And due to our perseverance and God’s mercy, I am now a Grammy. Just as I promised God that I would teach my children about Him, I promised God to teach Lil Man about Him. I am blessed beyond measure as I serve with a servant’s heart as our grandson’s Nanny and am able to teach him about the God Who is my everything. He isn’t even two yet, but these are some of the baby steps toward God he has made:

--He picks up his little Bible and says, “Bible”.
--We ask him to say prayers for Grammy and he folds his hands in prayer.
--I ask him who Jesus’ Daddy is and he replies, “God”!
--When asked where does God live and he points upward and says, “Sky”.

Our family is replete with conquerors. I am thankful for those who have traveled this journey with me – family and friends. Even though I celebrate my 14th Cancerversary in the ICU today, I am very, very blessed.

John 10:10

The thief (Leukemia) does not come except to steal, and to kill, and to destroy.

I (God) have come that they (Stacie and her family) may have life, and that they may have it more abundantly.

Reflections on Forgiveness

"It is the truth that those who forgive most shall be most forgiven."
- Josiah Bailey

"Let all bitterness, wrath, and anger, and clamour, and evil speaking, be put away from you, with all malice; and ye be kind to one another, tenderhearted, forgiving one another, even as God for Christ's sake has forgiven you."
-Ephesians 4:31-32

"Those who hate you don't win unless you hate them, and then you destroy yourself."
-Richard Nixon

"I firmly believe that a great many prayers are not answered because we are not wiling to forgive someone."
-D.L.Moody

Update & Request for Prayer: August 18, 2010

I have been quite ill and have not updated my blog as I should. Due to my prayer recruiters, Tina and Dawn, I know several of you have learned of this latest bout of struggles. Thank you for praying.

THURSDAY

Ear pain resulted in ear infection. Biaxin started.

SATURDAY

Felt worse. Fevers increased and cough was productive. I suspect the return of the fungal infection when I was hospitalized in June.

SUNDAY

Cough, fever, chest congestion and my oxygen levels worsened overnight. I went to the hospital and they performed a chest x-ray, blood cultures and other labs. My doctor was out of state and she is the General of my medical team. I was determined to not be admitted with her away. I began having trouble breathing and shortness of breath.

Later Sunday evening, my doctor called much to our dismay, a staph infection was found growing in my lungs. She consulted my Infectious Disease Doctor and we returned to the hospital to begin a third antibiotic. I did not have a drug reaction and we returned home around midnight.

MONDAY

I saw my doctor and the lab managed not to provide the staph ID and sensitivities by 5 PM. It was a difficult day - I spent over 2 hours at the doctor trying to sort everything out. I had numerous calls with the insurance company and specialists.

My pulse was up to 137 on Monday evening with continued fevers and the ID Dr. was concerned about that - I was told if my pulse went higher or did not begin to decrease and if symptoms continued to worsen, they would admit me.

At five minutes before five, the insurance came through with approval for oxygen for home use.

I went to bed not feeling well and awoke with chills at 1 AM (early Tuesday morning). Chills and my related symptoms could indicate septicemia (infection in bloodstream). Kevin rushed me to the hospital at 2 AM and I was again admitted to ICU.

By early afternoon yesterday, I had been safely desensitized to IV Zyvox for the staph in my lungs and IV Tobramycin to add coverage in case my worsening is related to septicemia. The sensitivities are still not here so they could change both these drugs. Oxygen support was such a relief. I was struggling to breathe and talk, so I knew I was in trouble.

WEDNESDAY

My doctors have been in this morning. My counts are already diving due to marrow suppression worsened by infection and these powerful drugs. The Zyvox (IV antibiotic for Staph) had a warning about marrow suppressed people and Tobramycin always reduces my counts. Once again, we must weigh risks versus benefits. My WBC was 60,700 yesterday and is 38,900 today (and that decline is with IV steroids that always INCREASE my WBC). My ANC required a Neupogen injection at noon and I will continue to receive it since we expect further WBC declines. I was hoping to receive IVIG treatment tomorrow but that doesn't appear to be happening. Zyvox is infusing as I type. Once this IV is in, the Tobramycin will be started.

My Hemoglobin has fallen by 2 points with just one day of these drugs. My NIH oncologist forewarned me that blood transfusion support might be required. Infection always suppresses my marrow somewhat, so hemoglobin prayers are needed. My platelets have declined as well.

They took a urine sample overnight for culturing - not symptomatic but with ongoing fevers we cannot leave a stone unturned. Also, another sputum sample was taken for a silver stain to look for PCP again - I imagine that will be a send out lab. The lab has failed to identify the staph infection or provide drug sensitivities. Their shoddy performance is alarming to me when these results dictate life saving decisions for me.

Please pray:

-For the infection(s) to be identified and drug sensitivities to become quickly available
-For me not to require blood transfusions
-For me not to be dependent upon oxygen
-For additional infections or hospital acquired infections NOT to develop
-For me not to have drug reactions
-For God to direct all decisions made on my behalf and staffing chosen to help me
-For strength and courage for my family and me

That is the update for today. Continued prayers treasured.

Accolades

This has been a summer of accolades and recognitions for me. I have joked that usually people begin receiving such recognitions when they are about dead or are dead. I have never been focused on worldly recognition. Rather, like the Nicole Nordeman "Legacy" lyrics states: "I want to leave an offering, a child of mercy and grace who blessed Your name unapologetically. And leave that kind of legacy."

Most importantly, I want to be remembered for my steadfast faith in God Above throughout a life punctuated with much pain and many problems. I want Him to be recognized and glorified through all that I do.

Some of you might recall that I was named the "Cancer Survivor of the Year" in June. Kevin and I appeared in the national Coping with Cancer magazine (July issue) in conjunction with their Survivor Day coverage.

The nonprofit I previously directed featured a tribute to me on the front page of thier newsletter last month. And the other nonprofit where I served as Program Director has named an annual award after me that will recognize outstanding servants of the ministry.

Lastly, I submitted some of my photos to the new cancer center. They wanted to use patient photography as art in the new center. Three of my photographs were selected. The private room where I receive all of my treatments is the "Stacie Room" with my photograph on the wall and Stacie usually residing in the chemo chair!

I am thankful for the gifts and talents that God alone has given to me. I would be nothing apart from Him.

"Legacy" lyrics:

I don't mind if you've got something nice to say about me
And I enjoy an accolade like the rest
You could take my picture and hang it in a gallery
Of all who's who and so-n-so's that used to be the best
At such'n'such ... it wouldn't matter much

I won't lie, it feels alright to see your name in lights
We all need an 'Atta boy' or 'Atta girl'
But in the end I'd like to hang my hat on more besides
The temporary trappings of this world

I want to leave a legacy
How will they remember me?
Did I choose to love?
Did I point to You enough To make a mark on things?
I want to leave an offering
A child of mercy and grace who blessed your name unapologetically
And leave that kind of legacy

I don't have to look too far or too long awhile
To make a lengthy list of all that I enjoy
It's an accumulating trinket and a treasure pile
Where moth and rust, thieves and such will soon enough destroy
Not well traveled, not well read, not well-to-do or well bred
Just want to hear instead, "Well Done" good and faithful one...

An Update & Request for Prayer: August 14, 2010

I continue to run fevers and have been neutropenic this past week. I have received three Neupogen injections and they have given my neutrophils a boost. It always concerning to run fevers in the presence of neutropenia. Please pray specifically today for God to tend to any infection that might be undiscovered.

The cough continues and we are still awaiting the fungal culture results from my bronchoscopy on June 24th. Can you believe that?

My spleen continues to grow and grow and grow. It causes a great deal of discomfort and sleeping is nearly impossible.

I continue to research and ponder if/what treatment I should consider. I was leaning toward the metronomic chemotherapy (reduced doses infused 24 hours a day), however, I now believe that splenic irradiation might be more survivable. Two of my beloved and trusted oncologists have been advising me from afar about this possible option. I located a German trial using splenic irradiation with leukemia patients. I did not realize all of the biological possibilities that radiation might induce. And I am talking favorable possibilities. In this study, 22-38 percent of the patients achieved remission. That might sound like poor odds to you, but they are amazing odds for an end stage leukemia patient.

I will continue to pray for God to make the path I am to pursue crystal clear. I anticipate if I decide to treat, that we will move toward treatment by September.

Temporary

"For we know that if our earthly house, this tent, is destroyed, we have a building from God, a house not made with hands, eternal in the heavens. For in this we groan, earnestly desiring to be clothed with our habitation which is from heaven, if indeed, having been clothed, we shall not be found naked. For we who are in this tent groan, being burdened, not because we want to be unclothed, but further clothed, that mortality may be swallowed up by life. Now He who has prepared us for this very thing is God, who also has given us the Spirit as a guarantee. So we are always confident, knowing that while we are at home in the body we are absent from the Lord. For we walk by faith, not by sight. We are confident, yes, well pleased rather to be absent from the body and to be present with the Lord" (2 Corinthians 5:1-8).

As I watch myself and so many Christians struggle against overwhelming trials and tribulations, I remind myself that we struggle on earth because this is not our home. We are lost foreigners with our true citizenship in Heaven ("For our citizenship is in heaven, from which we also eagerly wait for the Savior, the Lord Jesus Christ (Philippians 3:20). 2 Corinthians 5 presents a comparison between the temporary "tents" we reside in on earth and the lure of our eternal Home.

If asked today whether we would prefer living in a tent or a building, how would we reply? There are few, including myself, who would long to reside in a tent. Tents are temporary, they leak and break, and they are easily moved. Tents are not known for being comfortable and permanent. Conversely, buildings are permanent, not easily shaken and they offer the comforts of home that many of us experience. Paul uses this passage of Scripture to compare the body to our permanent homes in Heaven. There just is no comparison, is there?

I don't know about you, but my "tent" is not worthy of an overnight camp-out in my backyard. It is being destroyed and ravaged by cancer. Paul tells us that we "groan" in our "tents". As long as we reside in our "tents", we are "absent from the Lord" and our Heavenly destination. No wonder this life is so challenging.

Verse 8 of this passage states: ".....to be absent from the body is to be present with the Lord." I am convinced we struggle too much to maintain these earthly tents. People dread death - even Christians. Yet, when we remind ourselves of this verse, and know that once we are dead (aka absent from the body) that we are going to be present with the Lord, we can do no less than rejoice. Everyday we need to remind ourselves of this fact and then death will lose its sting and will pale in comparison to the promise of eternal life.

Lately, the Mercy Me song "Only Temporary" has been a favorite and a lyrical reminder of the teachings of this Scripture.

Don't let the situation get to you
This is not a hill worth dying on
Don't let these circumstances tear your heart in two
Soon enough this chapter will be gone

What's insurmountable today
Will surely one day fade away

CHORUS:
There's a reason why this world just don't feel right
Cause we are strangers who are simply passing by
In light of all eternity
It's only temporary

This place was never meant to be my home
Not comfortable in my own skin
Which may explain some of those days I feel alone
Standing on the outside looking in

But you're not hearing me complain
Cause I'm already on my way

This place was never meant to be my home
Not comfortable in my own skin

Link to the the music video for this song: http://www.youtube.com/watch?v=dZhCmvOhlKs

One of my life verses has been 2 Corinthians 4:16: 18: "Therefore we do not lose heart. Even though our outward man is perishing, yet the inward man is being renewed day by day. For our light affliction, which is but for a moment, is working for us a far more exceeding and eternal weight of glory, while we do not look at the things which are seen, but at the things which are not seen. For the things which are seen are temporary, but the things which are not seen are eternal".

No matter the depth of our pain and suffering and heartache today, we are assured that these are temporary afflictions. Don't give up - on yourself or on God. Don't doubt that you can wade through your difficulties. Don't forget that despite the intensity or long lasting of our heartaches, that they are "only temporary".

An Update & Request for Prayer: August 4, 2010

I offer my apologies for the delayed update. I have pondered and prayed over this update for many days (weeks). My leukemia journey has been sliding down a precarious pathway for the past year or so. If someone had told me when I was diagnosed, 14 years ago (on this August 18th), that my disease course would be so rocky, I would not have believed it and probably would have given up years ago.

This has been a perfect example for all of us to live each day fully and not to put off until tomorrow what we should do today. I encourage each person reading my blog to live life fully and to treasure each today, no matter your circumstances.

More importantly, if there is someone reading these words and who has yet to make Jesus the Lord of his or her life, I encourage you with all of my heart to make that commitment. “For whoever calls on the name of the Lord shall be saved” (Romans 10:13). Throughout this lengthy battle, I would not have survived the stress and strains without the presence of my Heavenly Father. For the hundreds of days that I have spent in ICU, I have rejoiced for all of the times He has reached down and rescued me and blessed me with more days with those I love. Of the most importance is the knowledge that I have my eternal destination determined. Death is not final for those of us who have confessed our sins and acknowledged Jesus as the Lord and Savior of our lives. When I exhale my last breath, I will be transported in a blinking of an eye to the throne of my Father. As these earthly days become more and more challenging, my new life in Heaven gains appeal. No pain. No tears. No heartache. No suffering. I will run on streets of gold to my mansion. The heavenly voices of the angelic choir will fill my ears. The presence of God will be beyond my comprehension.

Isaiah 43:2: “When you pass through the waters, I will be with you; and through the rivers, they shall not overflow you. When you walk through the fire, you shall not be burned, nor shall the flame scorch you.”

As I pass through these waters, I am not going to be burned. Everything in my flesh is trembling and confused and at times, overwhelmed. Yet, my spirit remains steadfast. To update my blog, I will have to type many negative findings and updates. These are the opinions of mortal men and women and we must never forget that our Lord reigns and He is the God of the impossible. I will never give up on a miracle slipping down from the Heavenlies to me. If that is not His plan for me, my soul is secure and I am ready for the heavenly journey ahead. God always knows best!

Despite the ICU stay in June and subsequent 21 days of IV antifungals, in the past two weeks, I have had three positive lung cultures return (AGAIN). I continue to have a productive cough, fevers, and some shortness of breath (especially on a day like today with a heat index of 117 degrees). It is difficult to believe this, but I have had some sort of infection every day since early September 2009. That is ten months – over 300 days -- of nonstop infections. Just the infections alone and their treatment are very draining to me. Such is life with a ship-wrecked immune system.

When I battled viral and bacterial infections early in my leukemia trek, I was always told that they would be relatively simple to diagnose, treat and recover from when compared to these nasty fungal infections. I believe that wholeheartedly. I better understand why so many people die from fungal infections when I see cultures taking 4-6 weeks and sometimes longer to provide identifications and sensitivities on the cultures. We will re-culture me this week to see if other pulmonary infections have developed since I remain symptomatic.

Recently, I have had several fungal skin infections on my trunk. We have been watching a new patch of something abnormal on my right cheek. Today, my doctor did a scraping of that to determine if that is fungal in nature. We will wait ………

The leukemia beast is rearing its nasty head – I have worsening of all B-symptoms - symptoms that oncologists follow that indicate disease advancement. Night sweats, fevers, splenomegaly (spleen is over a foot long in the longest dimension and it misplaces other organs when it is this large). My liver is also enlarging (hepatomegaly). The fatigue and pain levels have diminished my quality of life. In addition to the leukemia, the IV steroids I required in the hospital caused weakening of my muscles and despite going to the gym four nights a week prior to the hospital admission, I struggle with normal daily activities.

The doctors do not believe I can survive splenectomy (surgical removal of spleen) due to my infection risks and I still cannot locate a team that will attempt low dose splenic irradiation. After reviewing 20 years’ worth of studies on leukemia and low dose splenic irradiation, I still believe that it could have value to me. But who wants to listen to me?

I have consulted with several of my leukemia specialists and the consensus is unanimous – if I do not treat the leukemia, it will kill me. If I do treat the leukemia, an infection will likely kill me. One doctor told me it is not a matter of “if” an infection will kill me, it is “when” an infection will kill me. Another trusted specialist told me, "Untreated, you are going to succumb to infection sooner or later. Treatment might kill you sooner." We are so accustomed to medical science always having an answer for our health challenges. This situation is what some would deem in earthly terms - being between a rock and a hard place.

I had a difficult time with IVIG a couple of weeks ago. Since an allergist developed my current protocol (heavy premedications and an eight-nine hour infusion), I have tolerated IVIG well. That was until last month. I was very ill during the infusion and then later that night, the infusion site developed a hive-like rash. It had to happen on a Friday night when my three main physicians had all left on vacation! I spent the night popping steroids and Benadryl and applying prescription strength steroid cream to the rash and lo and behold, Dr. Stacie had it taken care of before the sun rose the next morning. We are trying to determine if the Opsite material that covered the IV site contained latex. If I am developing a latex allergy then we need to determine this.

I have a plan for today – notice I type “I”. I still need additional prayer about this plan as I am not 100 percent certain that all of the details are in line with God’s plan and I do not want to step outside of His direction for my life. My consultation today with my trusted family physician helped me to finalize some of the outline of this plan. I want God-breathed details and guidance to fill in the blanks of my outline. I am going to attempt – if I can secure some help – to return to the strict protocol I was following prior to my hospital admission. It is exhausting to coordinate the strict dietary guidelines, exercise, supplements, etc. and is something I cannot do on my own. My doctor went as far to say that even if I must hire someone to help me, this is about saving my life and that is what I will have to do. This protocol is from the Integrative Cancer Center I visited in Chicago in April. My family doctor believes I need to focus on regaining strength and supporting my fractured immune system. My CD4 T-Cell counts are lower than an AIDS patient right now and that opens an entirely new can of worms for me with regard to infection risks. I recently read in the Christian magazine, Charisma, an article about a missionary’s work with AIDS patients in Africa. They had seen increased CD4 T-Cell counts in these patients as they administered a product containing sea minerals and other natural products. I am trying to track down this missionary and the product to inquire if I can obtain it in the States and if he believes it will help non-AIDS patients who have T-Cell defects. Reversing my spiraling trend of falling T-Cells would be of great benefit to me and would result in fewer life threatening infections.

I had been considering an European protocol that used low dose chemotherapy agents Fludarabine and Cytoxan with elderly leukemia patients who were too weak for standard treatment. Most faired extremely well on the protocol and I had even discussed it with the Italian trial investigator. However, once we learned of the very low T-Cell count (and knowing that Fludarabine is the ultimate enemy of T-Cells), I have had to stop and reconsider that protocol. The Cancer Center in Chicago discussed fractionated chemotherapy with me. This is used in other countries and uses doses as low as 1/5 of the standard dosage of chemotherapy to treat end stage patients. Some protocols infuse the drugs with a pump over many days versus over a few hours to help limit toxicities. Makes perfect sense to me.

This has appeal to me and seems quite sensible. Yet, I am all too familiar with the inflexibilities of the USA’s medical system and insurance companies. Once I decide upon which chemotherapy agent I might consider using in fractionated doses, then I have the task to convince doctors and the insurance “gods” to orchestrate and pay for the protocol. So much to accomplish and so little stamina to do it!

The Mercy Me song “Hold Fast” has offered immense encouragement to me this summer. The lyrics remind us:

To everyone who's hurting To those who've had enough To all the undeserving That should cover all of us Please do not let go I promise there is hope

Hold fast
Help is on the way
Hold fast
He's come to save the day
What I've learned in my life
One thing greater than my strife
Is His grasp So hold fast

Will this season ever pass?
Can we stop this ride?
Will we see the sun at last?
Or could this be our lot in life?
Please do not let go
I promise you there's hope

You may think you're all alone
And there's no way that anyone could know
What you're going through
But if you only hear one thing
Just understand that we are all the same
Searching for the truth
The truth of what we're soon to face
Unless someone comes to take our place
Is there anyone?
All we want is to be free
Free from our captivity,
Lord Here He comes

You Tube Video Link: http://www.youtube.com/watch?v=uWejcH0JWTc

So, I am holding fast. For my family and friends who read this, who might shed a tear for me, let me encourage you that we are not alone. God remains very near to each of His children even when the day is the darkest and our hearts are the most troubled. Hold fast, my dear ones, hold fast.

(And thank you so much for your prayers and encouraging posts!)

You Carried Me

He carried me and continues to carry me. My life and body are so broken yet He continues to pick up the pieces and carry me into the next tomorrow. When the sun rises, he lifts me up and carries me through yet another day.

"You Carried Me"
Building 429

I've been so busy
I missed the reasons
I missed Your love
and I nearly missed it all

Still You've held me
And You've healed me
You've given all
And it brought me to Your cross

And I stand only because
You've given me grace to walk
Only because

[CHORUS]
You carried me
You carried me
You carried me through it all
And I believe
Yes I believe
You'll carry me all the way home
Cause mercy covers all

I know the scripture
I've known the songs
I sang the words
from my hollowed heart

But You've spoken softly
Through the storm
I've heard Your voice
and I've felt the calm

I stand only because
You've given me faith to walk
Only because

[CHORUS]
You carried me
You carried me
You carried me through it all
And I believe
Yes I believe
You'll carry me all the way home

Lord I know that you love me
I'll never doubt it
I can't live without it
Your mercy has found me
I am astounded
I can't live without it, oooh

You carried me, You carried me
You carried me through it all...

You carried me
You carried me
And I believe
Yeah I believe
You'll carry me all the way home
Cause mercy covers all
Mercy covers all
Yeah, yeah
And I believe

http://www.youtube.com/watch?v=75YZ8ByHSrM

Forgiving Others

Learning to forgive those who hurt or offend us is one of the greatest abilities we can ever achieve. And apart from the Holy Spirit working in our hearts and lives, we cannot do this on our own. Today, let us reflect on those who have hurt us and we have failed to forgive and then meditate on these verses and quotes. May we each be challenged to forgive the person who has hurt us the most deeply.

Matthew 6: 14-15
“If you forgive men when they sin against you, your Heavenly Father will also forgive you. But if you do not forgive men their sins, your Father will not forgive your sins.”

Unforgiveness can drag us down and figuratively bury us. Often the times the person we need to forgive, goes on living with not even a portion of the heartache and pain that we carry in our unforgiveness. Most importantly, unforgiveness erects a looming barricade between us and our Father. If we think we cannot forgive someone because the hurts they have inflicted are much too painful, let us recall the tragic death our Savior died on a cross for the forgiveness of our sins. Our hurts pale in comparison, don’t they?

I do not know the author of this quote, but it is a powerful quote for us to consider.
“Every person should have a special cemetery lot in which to bury the faults of friends and loved ones. To forgive is to set a prisoner free and discover the prisoner was YOU.”

Again, we are urged to forgive because in doing so, we are freed in a way that only true forgiveness can generate. Note in this quote that we are to bury – and not dig up – those faults in need of forgiveness. Too often, we will say in words that we forgive someone, but we will cling to the baggage and hurt which confirms that true forgiveness has not occurred.

“Hate is a prolonged form of suicide.” –Douglas V. Steere

Such truth composes this quote. Hate and unforgivness gnaw away at our spirits and souls. Thought by thought, memory by memory, and heartache by heartache……as long as we do not forgive those who offend us, the erosion of our lives slowly transpires. And before we realize how critical the unforgiveness in our lives has become, our hopes and dreams are eradicated by our own unforgiveness.

As Christians, God has given us the “ministry of reconciliation” (2 Corinthians 6:18). What does this reconciliation require of each of us …… understanding, resolution, compromise, reunion, ceasefire, bringing together, appeasement……may we each commit our lives and hearts and minds to forgiveness and reconciliation in each relationship that challenges us.

No Matter What

Today I received an e-mail with this message from someone I have never met. She is on a prayer chain that has faithfully prayed for me for quite some time. I wanted to share what she wrote and this song that she sent to me. I pray that it will encourage someone else today. Thank you Kelli and Donna!

Kelli wrote: This song reminds me of what Stacie is living -- have you heard it by Kerrie Roberts called "No Matter What"?

I'm running back to your promises one more time
Lord that's all I can hold on to
I gotta say this has taken me by surprise
But nothing surprises You

Before a heartache can ever touch my life
It has to go through Your hands
And even though I keep asking why
I keep asking why

No matter what, I'm gonna love You
No matter what I'm gonna need You
I know You can find a way to keep me from the pain
But if not, I'll trust you
No matter what, no matter what

When I'm stuck and there's nothing else by myself
I'm just sitting in silence
There's no way I can make it without Your help
I wont even try it

I know You have Your reasons for everything
So I will keep believing
Whatever I might be feeling, God, You are my hope
And You will be my strength,

No matter what, I'm gonna love You
No matter what I'm gonna need You
I know You can find a way to keep me from the pain
But if not, I'll trust you
No matter what, no matter what

Anything I don't have You can give it to me
But it's okay if You don't, I'm not here for those things
The touch of Your love is enough on its own
No matter what I still love You and I'm gonna need You

No matter what I'm gonna love you
No matter what I'm gonna need you
I know You can find a way to keep me from the pain
But if not, I'll trust You
No matter what, no matter what

I know You can find a way to keep me from the pain
But if not, I'll trust you
No matter what, no matter what
No matter, no matter what

To listen to the song: http://www.youtube.com/watch?v=OA3MSqufJP4

22 Months Old

Yes, Lil Man has reached his 22 month milestone! He possesses this amazing ability to restore his Grammy back to her feet after difficult days. After the ICU admission and weeks of IV's, procedures, and more testing, Lil Man decided to reinfuse my life and spirit with joy and encouragement.

One morning the week before last, I arrived to pick him up at his Mommy's office. They opened the back door and he blurted out, "GRAMMY"! I could barely believe what my ears had just heard. And again, he shouted, "GRAMMY!" Now, he had been calling GramPY, the endeared name of PEE and GramMY had been called MEE up to that time. No word like GRAMMY has brought such joy to my heart. Now, Lil Man follows me around the house and probably says, "GRAMMY" about one hundred times daily. (Forgive me, but Grammys are allowed to exaggerate when it comes to their grands!)

His vocabulary is amazing and we are tickled pink about a few of his word pronunciations. On his farm, they grow corn and beans. We ask him, "What crops does your Dad grow on the farm?" And he promptly responds, "Corn and beanAS". Beans are always pronounced BeanAS and we roll with laughter. We have to be cautious if we order green beanAS in a restaurant because all of us have found ourselves pronouncing beanAS in this unique fashion.

He has enjoyed July's fireworks, fairs and carnivals. Hopefully, this week if Grammy gathers up some energy, I will be able to take him to a local fair and carnival. He already has plans to play in his water table tomorrow. He was visiting this evening to celebrate his Uncle Philip's 31st birthday and he has already gathered up all of his water toys. He is so smart - just ask all of us who love him! We are not biased or partial in our assessments of his intelligence and many other talents.

Enemy Leukemia

Enemy Leukemia
waging war in my body
as enemy combatant,
adversary to my life.
Never to my soul.

Leukemia cells live and live and live...
incapable of dying.
accumulating and destroying my body,
taunting and teasing my mind.
Never touching my soul.

Stealth in its abilities
to dodge weapons of
chemotherapy destruction;
evading the smart bomb.
Never stealth and covert to my Father.

Just one stealth cell thriving
in marrow or blood;
one cell.
Remission is stolen;
life is shortened on this earth.
Never touches my eternal life.

--Copyright Stacie

Wisdom from the Book of Philippians 1

I have been studying the book of Acts and some of the letters written by the Apostle Paul. I just marvel at his wisdom in words. I wanted to share some of my favorite verses from the book of Philippians and I pray that they speak to your spirits as they have spoken to mine. May each of us be challenged and encouraged as we meditate on these words. Each day this week, may we challenge ourselves to take one of these verses and strive to live it out fully in our own lives. If you are challenged or changed by one of these verses, post your praises to God on this post! All glory be to Him.

"And this is my prayer: That your love may abound more and more in knowledge and depth of insight, so that you may be able to discern what is best and may be pure and blameless until the day of Christ, filled with the fruit of righteousness that comes through Jesus Christ — to the glory and praise of God (Philippians 1:9-11)."

Discerning what is best - don't we each desire that? I want to discern the best treatment for myself. I want my children to discern the best plans God has for their lives. I want leaders of our country to discern the best course of action for our nation. We cannot exhibit such discernment without the love and righteousness of Christ in our lives. May we open the doors of our heart each day and ask Him to reign and rule over our lives.

"...for I know that through your prayers and the help given by the Spirit of Jesus Christ, what has happened to me will turn out for my deliverance (Philippians 1:19)."

Knowing with this type of certainty that God is in control of our lives and that by living our lives in obedience to Him and His Word that all things are going to work for our good, is such a guarantee of peace. I am certain that no matter what mayhem leukemia causes in my life, that I will one day be delivered from its destruction. May each of us engage the resources of prayer and guidance of the Holy Spirit (through prayer and God's Holy Word) to foster this type of confidence in our futures.

"I eagerly expect and hope that I will in no way be ashamed, but will have sufficient courage so that now as always Christ will be exalted in my body, whether by life or by death. For to me, to live is Christ and to die is gain. If I am to go on living in the body, this will mean fruitful labor for me. Yet what shall I choose? I do not know! I am torn between the two: I desire to depart and be with Christ, which is better by far; but it is more necessary for you that I remain in the body (Philippians 1:20-24)."

Don't Paul's words and reflections resound in your spirit? They speak loudly to me. I recall early on after my leukemia diagnosis, that I was concerned that my faith would be shaken and that Christ would not be exalted in my life. This was and continues to be a personal prayer of mine. Never, do I want a life challenge to shake my faith foundations. The Scripture in verse 21: "For to me, to live is Christ and to die is gain" is one that I have requested be engraved on my grave marker. He has certainly kept me alive and life would not have been mine without all of the acts of healing and mercy that He has extended to me. However, to die will certainly be gain for each of us who have believed in the Lord Jesus Christ for forgiveness of our sins and salvation of our souls. Even Paul wavered and pondered about which to choose - he was "torn between the two". If today is a day of challenge for you, refocus your thought life and energies on the Word of God. Don't be distracted or side-tracked by today's trials and tribulations. Eternal life awaits the children of the Most High God - "to die is gain".

"Whatever happens, conduct yourselves in a manner worthy of the gospel of Christ" (Philippians 1: 27).

So few words with such immense instruction. Imagine if each of us could master this statement: WHATEVER HAPPENS, CONDUCT YOURSELVES IN A MANNER WORTHY OF THE GOSPEL OF CHRIST."

WHATEVER HAPPENS.

WHATEVER HAPPENS.

Whatever could include being told you are dying; that you have lost your job or all of your finances; that you have been betrayed by family or friends; that your heart has been ripped into a billion tiny pieces; that your loved one just died; that your child has turned his back on his faith; that depression has stolen your joy - WHATEVER HAPPENS. May each of us conduct ourselves in ways that are pleasing to our Father when we are rejoicing on life's mountaintops and when we are sobbing in the valleys of our lives. Whatever happens ........

Update & Request for Prayer: July 11, 2010

My apologies for the delay in updating my blog. I have had some technical challenges with my laptop and I am not a pro at posting from my cell phone yet, so I have just remained silent. I am grateful for all of you who post a comment of concern or who drop me an e-mail to inquire if I have returned to the "slammer" (aka ICU).

The PICC line site healed well and I have not developed any infections from that procedure. We realize that removing it may result in my turning around and having to have another line inserted if the fungal cultures are positive from either the sinus or lung scopes from last month.

I continue to run periodic fevers and have a productive cough. I anticipate the end of this week will be the earliest that we might receive preliminary fungal cultures from the two scopes. More likely, it will be another two weeks. If these fungal cultures are negative, then I believe this will be a stronger indicator that my NIH physician's suggestion that the leukemia might be infiltrating my lungs is accurate. And while we always view fevers in the context of infection, fevers also can be a "B symptom" of leukemia - symptoms that can indicate that the leukemia is progressing. This past week, I reviewed this list of classic "B Symptoms" and was quite alarmed to realize that I now possess every symptom on the list.

I have remained very fatigued - some days just the motions of everyday life seem very overwhelming, yet I attempt to strive on and maintain some normalcy in my life. In the midst of the physical fatigue, a deep, brain fog presides over my thinking - another reason my blog updates have been sparse. Some days just formatting a paragraph seems to zap my energy. I have been researching to see if I can locate any chemotherapy protocol that could be survivable for an end stage patient.

I vacillate between feeling a moment of temptation that yearns to strike the leukemia with a potent weapon of destruction (chemotherapy) to returning to my current state of engaging only palliative care options. I will not move ahead until I have clear peace and guidance that only the Holy Spirit can provide to me.

The current chemotherapy protocol that I have been reviewing is from an Italian clinical trial. I have corresponded with the primary investigator in Italy. This protocol studied the chemotherapy agents Fludarabine and Cytoxan, used in low doses in an elderly population of patients. The reasoning was that this elderly population could not survive standard chemotherapy doses. While my age is far from being considered "elderly", it is doubted if my body can withstand many chemotherapy protocols due to my lengthy leukemia battle and fractured immune system. I have taken full dose Fludrabine in the past and it is the drug that wrecked serious havoc with my T-Cells (vital immune system cells). The last dose of Fludarabine I took was in 2004 and six years later, my T-Cells remain at very low levels. I have never received the other drug, Cytoxan. If I decided upon this Italian protocol, I would have to convince my physicians and the insurance "gods" to approve it for me. This protocol would mean 4 days of chemotherapy every 28 days for four to six months.

Two other alternative treatments that I am considering are also widely used in Europe but not in the USA. Mistletoe extract (Iscador) has been estimated that 40-60 percent of European oncologists are using Iscador with their cancer patients. The other possible alternative treatment is Carnivora (extract of the Venus flytrap). I am researching both of these options. Interestingly, one recent study on Iscador reviewed its use with Cytoxan (the chemotherapy drug I mentioned above) and the Iscador increased the effectiveness of the Cytoxan.

Decisions such as the ones that I am facing are not made without much prayer, much research and much reflection. I ask that you continue to uphold me in your prayers. I want God to reveal the path He has for me to pursue. I know MY plans will not succeed without Him. Proverbs 16:9 reminds me: "A man’s heart plans his way, but the LORD directs his steps." I can make all the plans in the world, but I desire for the Lord to be directing each step. He doesn't make mistakes like I do!

A Prayer for Today: July 2, 2010

Father,

We rejoice for the Holy Spirit's comforting and guidance. We are grateful for the Helper whom You have left with us. Where would we be without the Holy Spirit in our lives? Luke 12:12 instructs us: "For the Holy Spirit will teach you in that very hour what you ought to say.” So tonight, Lord, I pray that each of our spirits will be prompted by the Holy Spirit to pray for needs that surround us.

Before I ask Your touch upon so many urgent petitions tonight, I ask You, Father, to "Search me, O God, and know my heart; try me, and know my anxieties; and see if there is any wicked way in me,and lead me in the way everlasting" (Psalm 139:23-24. May our hearts, minds and souls be cleansed by the Blood of Jesus.

Lord, as I type this, you are aware of the heartaches and concerns that each of us is facing. May the presence of the Holy Spirit be deeply sensed by us daily. May Your peace flood each soul's heart. May Your purpose be sensed in each soul's life. May Your hope be instilled in each soul's spirit. May we be always inclined to seek YOUR way for OUR lives. I am thankful that Your ways are always right for us.

We love you, Dear Father. We are grateful beyond what words can express for your goodness and mercy that You extend to each of Your children.

In Jesus' Name I pray. AMEN.

House Call

As I had mentioned, my trusted NIH/NCI (National Institutes of Health/National Cancer Institute) physician, Dr. M. drove over 700 miles this week to visit us – what a house call! I have been so blessed with physicians who are compassionate, brilliant caregivers.
To be able to sit and chat with him about new research, new protocols, reflections on current treatment, and other breaking news from the leukemia experts was a blessing as was just spending time with a man who has meant so much to my longevity with leukemia. He has cared for me over a decade and this week marked his retirement although his lengthy leukemia-driven plans did not sound like someone who had retired! He will be speaking at CLL symposiums in Italy and Spain later this year.

Dr. M. has consulted extensively through these years with my local family physician. Ironically, both of them were born and raised in Iowa and she came to our home last night to meet Dr. M. and to visit with him. Kevin took this photo last night of me with these two beloved doctors. Dr. M. departed this morning. I pray that our paths will meet again.

Update & Request for Prayer: July 2, 2010

For those of you who prayed today for my PICC line removal to be a success, I thank you. It is out and intact and I had very little bleeding – all answers to my prayer requests. Please continue to pray that it does not develop an infection. My daughter, Stephanie, who has almost earned her Masters degree as a Nurse Practitioner, took me. Thanks, Steph!

My cough continues. Perplexing and puzzling to my physicians and me, we will have to continue to be medical sleuths to determine its cause. Fungal cultures from last week’s bronchoscopy “might” reveal some clues in 4-6 weeks. Sigh. My NIH oncologist suggested that the leukemia might be infiltrating my lungs. If we had considered that possibility last week, a sample of lung tissue could have been removed during the biopsy to determine if the leukemia was present. I believe everything happens for a reason and a purpose, so I will try not to second-guess myself and wish that the biopsy had occurred – that would have increased the risks of the procedure, so I will accept it was God’s will that a tissue sample was not removed.

I will write more in another blog update about our blessed visit by my NIH oncologist this week. What an amazing individual, physician and researcher, Dr. M. is! We enjoyed his presence and update on recent updates on treatments and other considerations. When I asked him if I had made a poor decision when I declined treatment with Revlimid earlier this year, he said definitely not and that he was not impressed with the drug’s performance. Revlimid was the drug that had been recommended in 2009 and I declined it after much prayer. It was re-recommended in early 2010 and I felt that if God had directed my paths away from the drug the previous year, that He would not change His mind. He always knows best, doesn’t he?

Dr. M. also suggested that the great tumor load that I am carrying right now could be adding to my infection rate as much as the degree of immune suppression. He believes that treatment might be in order again, very soon. For the ten thousand dollar question – what treatment can I survive? Please pray for this answer to be made crystal clear for me by the Holy Spirit. If the decision is made to resume chemotherapy/immune therapy, it will probably be very soon since we try to time treatment outside of the winter months due to increased risks of flu and other infections.

Thank you for your continued prayers. Happy Birthday, America!