Monday, December 20, 2010

Congratulations, Sis!

Our oldest daughter graduated with her Masters Degree in the Nurse Practitioner program on Saturday. We are very proud of her academic achievements and we are certain that she will provide compassionate, competent care to many patients. First-hand, she has witnessed, the vital role that nurses or nurse practitioners play in healthcare. Our family has witnessed outstanding nursing and we have experienced detrimental, dangeorus nursing. Our daughter pays attention to the needs of her patients' families as well. She has walked in those shoes as a family member of an ill patient for many years with me.

Her Dad wired her mortarboard with LED lights and she stood out in the sea of blue at the commencement exercises. Take a glimpse to see if you can locate our daughter!

Update & Request for Prayer: December 20, 2010

Radiation was canceled again today due to my low blood counts. I received radiation on last Monday and then the two other fractions were canceled last week. It is time for my marrow to recover and produce some cells! My WBC, hemoglobin and platelets are all low. Please pray that bone marrow failure is not the problem. You might recall after the first couple of weeks of radiation in November, I had a similar problem with all of my counts dropping. We requested prayer and they recovered. I am trusting they will recover again since marrow failure would be a very serious development.

Before having labs drawn, I knew my hemoglobin was down in the 8 or 9 range because I can always hear a whooshing of my heart or blood flow in my ears when my hemoglobin is in that range and that happened all night. And I was correct! Between the whooshing and the cough, I only slept an hour all night. The doctor said he had never treated a patient who knows her body like I know mine.

All we can do is to pray and to be patient. Our plan was to have the 600 cGy cumulative dose completed on New Year's Eve, but that is not going to happen. I am looking at mid-January now before completing radiation. Just going three times weekly for the treatment is very tiring. I believe this week is Week 7.

The cough continues. We have received no new answers from the tests ordered last week. The EKG will be repeated on my heart on Wednesday of this week and I will return to radiation on Wednesday. More Neupogen is ordered and if my platelets recover some, I will receive acupuncture on Wednesday.

Thank you for your continued prayers.

Wednesday, December 15, 2010

Looking for My Savior

This holiday season has been poignantly different for me. I have been too ill to enjoy the decorating and shopping and Christmas events that normally fill the calendar. Instead, hours commuting to the cancer center for lab work, radiation, doctors' appointments and tests have filled the calendar to over-flowing. Every year, it is my priority to retain my Christmas focus - Jesus IS the reason for the season - and I have usually succeeded.

This year, it hasn't been holiday hecticness that has distracted me, it has been the pain and suffering and all of the appointments. The fatigue from radiation has rocked me to my core. And today, I stopped amidst appointments at three doctors' offices, and realized I am failing miserably at remembering what all of this Christmas "stuff" is about. God, forgive me.

I am usually ever-listening to locate others in need at Christmas time, so that I can extend His love to them. My suffering and concerns have been looming so large this year, that, sadly, I have really just been thinking about myself. How did I ever allow leukemia to make me so inward looking, to the point where I am missing the blessing of helping others? I began reflecting and meditating on my shortcomings this Christmas season and asking for His help - looking for my Savior to lift my focus to Him and off of me and my challenges - they are all so temporary, as we know.

So tonight, on our drive home after hours in the car, shuffling from appointment to appointment, my husband said he was going to run in the grocery store to pick up something quick for dinner that he could prepare. I sat in the car while he shopped and God decided to drop me an opportunity to reach out to another in the spirit of Christmas. An elderly lady rode a motorized shopping cart out to her car parked across from us. She had several bags of groceries and crutches. I watched her hobble onto her crutches and I realized - God had just given me a way to serve Him. Exhausted, I left the warmth of the car and went to her and unloaded her groceries for her. I don't reflect on this to brag on my menial task, yet I reflect on it because today, God heard my prayers of sadness and repentance for not looking for ways to serve Him in the midst of medical mayhem. And He heard. And He answered. For the remaining ten days until Christmas, I will continue to look for my Savior and for His hurting people whom I can touch in any small way.

Update & Request for Prayer: December 15, 2010

I will play "catch up" on my blog. It has been a medically eventful week (what's new?) so I will review the week's events. This is Week 6 of splenic irradiation for me (I have received 325 cGy of 600 cGy). Currently, each dose (or called a "fraction" in radiation) is 25 cGy. I began at 50 cGy per fraction but my counts could not tolerate that dose, so it was reduced. I had hoped to finish by the end of 2010, however, radiation will continue into January.

I continue to battle the pulmonary problems of coughing, wheezing and shortness of breath. So, I had a CT on Monday and it did not reveal any pneumonia, tumors, leukemic infiltrates in the lungs or fungal masses. That was all good news, however, it leaves us with many questions about what is causing the shortness of breath and cough. PCP (a dangerous form of pneumonia) remains a possibility since indolent PCP often will not reveal itself on CT or x-ray. Today, upon recommendation of my NIH doctor, a PCR test for PCP was ordered. In the morning, I will use a nebulizer with sterile water to collect a sputum sample. We will take that to the hospital and that should give us an idea if PCP is contributing to the cough.


The CT did reveal some new cardiac concerns and degeneration of my spine. I have never had heart concerns, so that was quite a shock. Many of the drugs I have taken can be damaging to the heart. Today, my doctor asked the nurse to perform an EKG. The doctor said today's EKG results are very concerning but her regular nurse was not there and the lady who did the EKG was new to the machine. So, my doctor wants to repeat the EKG early next week when her regular nurse is there before we panic. I truly cannot believe with everything else I am dealing with that now I have a cardiac concern. I knew that I had degenerative changes to my lower spine, but was not aware of the changes in my upper spine. Steroids can be detrimental to bones and I now live on daily steroids due to the failure of my adrenal glands.

Now, onto some better news! I received radiation on Monday, however, my counts were too low and radiation was canceled. Today my WBC is 2 - that is low and most of you know I usually have a high WBC. So the radiation is definitely at work - really working! My hemoglobin was decent and my platelets remain low. The remarkable news is that Monday's CT results revealed that the spleen is shrinking in size and there were no enlarged lymph nodes in my chest (enlarged lymph nodes remain in my neck, abdomen and under my arms).

Most exciting to me is the fact that my lymphocyte percentage today has gone from 99% to 57% (normal being 15%-41%). My ALC (Absolute Lymphocyte Count) has decreased by 96% since beginning radiation! Before long, I will have a normal lymphocyte count and I have never achieved that with any of my past five chemo/immunotherapy adventures! Remember, lymphocytes are the blood cell line that is cancerous - precisely, my leukemia is a cancer of the B-lymphocytes. T-Lymphocytes are included in these lymphocyte counts that are being walloped and I need God to protect as many of the "good" T-Lymphocytes as possible.

A WBC is not without risks to me. I received a Neupogen injection tonight and will tomorrow. With a WBC this low, I am supposed to avoid crowds. However, that will be impossible as our oldest daughter graduates Saturday with her Masters Degree in the Nurse Practitioner program (in a crowd of thousands, so I will be wearing a pretty pink mask!) There is no way I am going to miss that special event!

So please pray for God to protect me from further infections; for my marrow to be able to begin producing cells I need; for my heart concerns not to be serious; and for strength and energy to enjoy our daughter's graduation and reception on Saturday.

Friday, December 10, 2010

Update & Request for Prayer: December 10, 2010

It has been a challenging week. I received radiation on Wednesday, however, the cough and breathing concerns continued to worsen. My sinuses worsened on Wednesday, so I had a sinus endoscope procedure on Thursday.

I awoke during the night very nauseated - the five consecutive radiation treatments have caught up with me again and the nausea and fatigue have returned. Since I was awake, I checked my e-mail and my trusted family doctor had emailed me at 11 PM last night to inform me that gram negative rods were growing out on the cultures from the scope. Gram negative rods are bacteria that can be highly dangerous to the immune compromised patient - some gram negative infections can kill in less than 24 hours. Included in the gram negative rod family is pseudomonas, which can be a life-threatening infection for people like me. I have battled it in the past and it is a formidable foe.

So this morning, my family doctor and infectious disease doctor decided to have me desensitized to another antibiotic - an oral one- to take while we wait on the lab to identify the gram negative bacteria (and we all know how many times the lab fails to provide vital answers to us). If pseudomonas or other bacteria are identified over the weekend that are not sensitive to the arsenal of antibiotics that I am taking, then I will be admitted to ICU for "big gun" IV antibiotics.

I arrived at the cancer center where I had my blood drawn and they installed a heparin lock in my arm so that I could go over to radiation without the IV pole. My counts were too low today, so radiation was canceled. My body probably embraced the break as it fights this infection.

Please pray for this infection to clear without a hospital admission to ICU. Please pray that the nausea and fatigue from the radiation will improve. Please pray that the radiation is beating back my foe, leukemia. Please pray that my breathing and cough will improve.

Monday, December 6, 2010

An Update & Request for Prayer: December 6, 2010

What a day! What a day! I arrived at the cancer center before 8 AM and I was there for over nine hours to receive my IVIG treatment today. I don't know why the infusion lasted so long - usually it "only" takes around 8 hours. Others, who have not had serious reactions to the IVIG, are able to receive it in fewer hours. However, I have reacted negatively to it in the past, so I patiently wait for it to drop, drop, drop into my veins. The treatment is cumbersome, not without risks, and very expensive ($10,000 per month), yet, my infection rate has lessened with the IVIG and my number of hospitalizations has decreased,

I saw the clock approaching 5 PM and knew the radiation center was going to close before I could arrive there for my radiation treatment. Thankfully, the kind staff waited on me and it was going on six o-clock before I finished for the day.

The gram stains from my lungs revealed that there are gram positive cocci growing out. The cough is still deep and annoying. I anticipate some form of action tomorrow - either a CT of my lungs will be ordered, an appointment with the pulmonologist, or a change to IV medications. Since my T-Cells continue to decline (due to the radiation), a serious form of pneumonia, PCP is always a suspect. I am hopeful that a bronchoscopy and/or hospitalization is not in my future. There are too many Christmas "to do's" remaining for me to end up in the slammer.

I was neutropenic again, so more Neupogen injections have been ordered. My counts were low but stable enough for radiation today. As of today, I have received 275 cGy of 600 cGy of radiation that is planned. Slow and steady win the race, right?

Please pray for the complicated concerns that daily threaten my life. I want to see improvement before Christmas! I long to feel better and stronger. Thank you for praying.

Perfect Tree Search



After a surprise eight-inch snow blanketed our property on Saturday,
 we ventured through the woods of a local Christmas tree farm
 to locate the perfect tree for our oldest daughter and son-in-law.
 It was a magical Christmas moment - a chill in the air, snowflakes drifting to earth,
and the crunch of eight inches of snow underfoot.
After much searching, she located her perfect tree.
I thought I'd share some photos of our morning.







Friday, December 3, 2010

Radiation Update: December 3, 2010

I have not been well this week, so I have lagged behind with my blog updates. With radiation and its effects on my blood counts, we were aware that my immune system would take further hits to its already fractured status. An infection in my lungs has taken up residence and has worsened all week. I saw my Infectious Disease doctor yesterday and he made yet another antibiotic change and if this infection worsens much  more, I know I will be admitted to the hospital for IV medications. I have used oxygen off and on all week and this morning I woke up to my chest rattling and whistling. Having heard about the "death rattles", I was a bit concerned to hear such a ruckus emitting when I exhaled.

This morning, I called my radiation oncologist and he ordered cultures, labs and we decided to go ahead with today's radiation treatment. I actually received all three of this week's treatments. It appears that I am tolerating the lower (25 cGy) dose better than the larger dose(50 cGy) I received the first week. My counts have not bottomed out as drastically with the lower dose, however, we are not seeing the improvements in counts either. All of this is such a delicate balancing act - using enough radiation to kill the leukemic lymphocytes without eliminating my vital neutrophils, T-Cells, platelets and red blood cells. As soon as my counts begin to recover, we strike with the radiation again, knowing the recovered counts will again fall.

A CT Scan earlier this week revealed that after four weeks of treatment, my spleen has not shrunk and remains the same in size. That was disappointing, yet, I still contend that it is too early to label this treatment a success or a failure. The lymph nodes in my neck feel smaller, however, the enlarged lymph nodes in my abdomen and around my aorta and heart were unchanged on the CT Scan.

I will receive some Neupogen injections over the weekend and then on Monday, I will receive my all day IVIG treatment at the cancer center followed by radiation. I had hoped to finish radiation before Christmas but that will not happen. I do not foresee an end to radiation until perhaps late January with Christmas Eve and New Year's Eve being sabotaged by radiation treatments.

Friday, November 26, 2010

My Prayer for Today: November 26, 2010

Precious Father,

Our humble gratitude cannot thank You enough, Lord, for what you mean to each of us. During a season of Thanksgiving, we focus on Your goodness and mercy. We thank You for saving our souls and chasing after our hearts, when we remained in our sins. We are grateful for the peace, strength, joy, courage and hope that Your Spirit places in our hearts and souls. Thank you for the provisions that come from Your hand to Your children.

As we transition from a season of thanksgiving to the celebration of the birth of Your Son, let us not be consumed with Christmas busyness. Help each of us to assign the true reason for the season at the top of our holiday “to do” list, Lord. May each gift we give be given with recollections of the gift of Your Son and the gift of salvation. May each blessing that we receive be a reminder to share with those who do without. Father, bring to our remembrance, during each of the days of the Advent season, the sacrifice that You made for each of us through the birth of the Christ Child.

With thanksgiving and gratitude, in Jesus’ Name, I pray. AMEN.

Post-Thanksgiving Update: November 26, 2010

This morning, I returned for radiation and again my counts did not allow for me to receive the radiation. My hemoglobin had dropped an entire point since Wednesday and I was neutropenic again. Thank God for Neupogen! I am so tired from the low hemoglobin - and we all know that tiredness is not permitted during the Christmas season!

On Monday, my radiation oncologist said he wants a CT of my abdomen to check on the spleen size and to see if the retroperitoneal lymphadenopathy(enlarged lymph nodes at the back of my abdomen) have decreased in size. If so, he will reduce the size of the radiation field and hopefully, my counts will recover more.

We have been plotting our future course. He is a wonderful doctor who is compassionate, who listens, and who is conservative with the radiation. IF I should manage a complete remission (it is possible), then we hope to convince the insurance to pay for "maintenance radiation" to maintain the remission (much like Rituxan maintenance). I would only receive a very small dose of radiation every 6 weeks to maintain a remission. Please keep praying for the radiation to eradicate the leukemia. It is a formidable foe, however my God is a very big God.

I haven't felt well the past couple of days. I was awake until 4:00 AM yesterday morning and this morning. The antibiotic changes this week have caused diarrhea (not a good thing with our Thanksgiving feast staring me in the face). Also, I am having blood from my sinuses, as I usually do with serious sinus infections. The cough and fevers continue. I anticipate a sinus scope on Monday, as well.

Thanksgiving Reflection

“Feeling gratitude and not expressing it
 is like wrapping a present and not giving it.”

~William Arthur Ward

Wednesday, November 24, 2010

Contentment

Philippians 4:11-13 (Amplified Bible)

“Not that I am implying that I was in any personal want, for I have learned how to be content (satisfied to the point where I am not disturbed or disquieted) in whatever state I am.

I know how to be abased and live humbly in straitened circumstances, and I know also how to enjoy plenty and live in abundance. I have learned in any and all circumstances the secret of facing every situation, whether well-fed or going hungry, having a sufficiency and enough to spare or going without and being in want.

I have strength for all things in Christ Who empowers me [I am ready for anything and equal to anything through Him Who infuses inner strength into me; I am self-sufficient in Christ's sufficiency.”

Once I began to absorb and obey these passages of Scripture, my life changed tremendously. Contentment is foreign to most people’s vocabulary. Without Christ at the center of our lives and heart, a very empty chasm exists. Therefore, people search and seek for anything to satisfy and fill that empty chasm. Unfortunately, nothing will ever satisfy the soul and heart of emptiness until Christ is invited to dwell in our hearts.

Even as a young Christian, I must admit that I did not live a life filled with contentment. As I grew and matured in my Christian walk, contentment began to fill my heart and soul. And I must admit to you that bringing my heart under the umbrella of contentment has been life changing. As this Scripture indicates, we must find our contentment in Christ – not from how much money we have or don’t have; by what health challenges we have or don’t have; or any other circumstances. Why? Because everything in this life is temporary – good times will transition into not-so-good times; good days will be replaced by difficult days – yet we must remain stable and fixed and content through it all. When we grasp contentment and strive to live in a contented state every day of our lives, no matter what happens, happiness and peace thrive. Seeking contentment has been one of my solutions to remaining mentally and emotionally intact through a 14 year cancer battle. I refuse to be discontented “just” because I have leukemia.

This Amplified version of this passage defines contentment as “satisfied to the point where I am not disturbed or disquieted”. As we prepare to celebrate a day of Thanksgiving, let us reflect on our past day or week and make a list of the times that our spirit was “disturbed or disquieted”. Now let us ask God to forgive our fleshly trek from contentment and ask the Holy Spirit to restore contentment and peace to our lives. God is not a God of discontentment. When we find ourselves beginning to stray from a contented state of mind, we must look closely to find where Satan is tempting and taunting and attempting to steal from us or destroy our lives (John 10:10). Stand firm. Resist the devil and he WILL flea (James 4:7).

God sacrificed far too much for us – his Son hanging on a cross for the sins of the world – for us to cave into disobedience, discontentment, and despair. And for those issues and problems that tend to tell us that they are impossible to overcome – focus on the last words of this passage of Scripture: “I have strength for all things in Christ Who empowers me [I am ready for anything and equal to anything through Him Who infuses inner strength into me; I am self-sufficient in Christ's sufficiency.” With the indwelling of the Holy Spirit in our lives – God with us – we are truly prepared for every life challenge. Contentment, rule and reign in our hearts and lives. AMEN.

Much To Be Thankful About......

The low WBC (White Blood Count) and neutropenia of Monday did not agree with me - I was very ill overnight on Monday and yesterday and ended up at my family doctor's office late yesterday. She ordered the complete neutropenic work-up -- blood cultures, urine culture, CBC, and chest x-ray. My family doctor and Infectious Disease doctor decided to add another antibiotic for me since I am really coughing again and am running a fever. So far, the urine and blood cultures are negative. And I did not require a Neupogen today.

My family doctor said all of my many enlarged lymph nodes are already smaller and softer and my spleen has shrunk quite alot since initiating the splenic radiation on November 8. My prayer for this radiation endeavor was to achieve a complete remission as the German study mentions. I have never achieved a complete remission in 14 years of CLL. This looks like it could be my most promising opportunity.

I have not been able to receive radiation since Wednesday, so I will return early Friday morning and if my counts are still improving, I will receive radiation on Friday. Leukemia doesn't take a break even for birthdays or Thanksgiving!

This morning, I took a sputum sample to the hospital. Then I traveled to my oncologists' office and had my labs drawn. Next I proceeded onto the radiation oncologist's office (with my parents who are my dependable chauffeurs).

Praise God! Praise God! All of my counts had improved since Monday. I told my parents it is pretty pitiful when I came out of the doctor's office and gave them "two thumbs up" yet all of my labs remain in the abnormal range except for my White Blood Count), HOWEVER, THE COUNTS HAVE IMPROVED AND WE ARE REASSURED THAT THE RADIATION HAS NOT CAUSING BONE MARROW FAILURE. Thank You, Lord.

A bone marrow biopsy and possibly a high dose steroid boost were planned for next week if my counts continued to decline. Hopefully, both of these things have been avoided. For other leukemia patients considering splenic irradiation, I am convinced that "slow and steady" will win this race - frequent CBC's to pinpoint when the marrow is struggling to produce the blood lines and the willingness of physician and patient to hold on radiation fractions when the counts are struggling.

Thankfully, my milk experiment had boosted my T-Cells because the radiation has really knocked all of my T-Cell counts back. My CD4 count is back to 152 (AIDS patients' CD4 counts are 200 or less, so you can see what leukemia and treatment do to my CD4 Counts), so we have to readdress the PCP prophylactic medication issue again. I will see my Infectious Disease Doctor next week.

My radiation oncologist came in the room smiling and said, "I prayed last night that your counts would turn around before Thanksgiving and they have." I have a NORMAL WBC 7.5! Best of all my lymph percentage (usually 98 or 99%) is 67%! Remember that for me, LYMPHOCYTES=CANCER! (- I have never seen the lymphocytes this low with any of my previous five chemo protocols.  Hemoglobin and platelets remain low but a bit better today.

Yesterday, my family doctor ordered me to 6 days of rest. HA! She even had her prescription pad out and said she was going to write a prescription for rest and that I was not to cook Thanksgiving dinner. HAHA!

So, our daughter Stephanie arrived this afternoon, and I sat in my pajamas and gave directions and she did a great job preparing Thanksgiving dinner and we have almost everything prepared. She also set the table for me - I always use my Grandma's china, crystal and silver at holidays, but this year, I had to follow the easy route and bought Thanksgiving paper products. I will be thankful tomorrow night when I would have been hand washing all of those dishes.

My family doctor also told me not to be in crowds right now and to even wear a mask tomorrow with family. There goes my Black Friday shopping - no bargains for me! Thank you for your prayers and continued prayers!

Happy Thanksgiving to my family, friends and medical team!

Monday, November 22, 2010

Urgent Prayer Request & Birthday Reflections: November 22, 2010

I ask for your prayers tonight. I have not been able to receive my radiation since last Wednesday due to my blood counts being in a downward spiral. For the first time in my life, I actually have a LOW White Blood Count (WBC). I began this foray into radiation with a WBC of nearly 50,000 (normal WBC is 5000-10,000) and today my WBC is 3500. More concerning to me, my hemoglobin and platelets are dropping daily and blood transfusions are looming. I desperately need my bone marrow to kick into action and begin producing blood cells. It is my prayer that the radiation has not permanently damaged my marrow.

Over the weekend, I developed a cough, low-grade fever and a runny nose. Hopefully, this will not require IV antibiotics. The nausea from the radiation has lessened since I have not received it for several days. With Thanksgiving fast approaching, I really do not want to end up in the hospital on a holiday weekend (based on past experiences, the care at hospitals is very poor on holidays when a majority of the best of doctors and nurses have the holidays off).

This weekend I celebrated my birthday. And I don't write "celebrate" without many emotions attached to the word. Unlike most women in this world, I am delighted to grow older - it is better than the alternative of NOT growing old. My family held a birthday celebration for me last night. Lil Man helped Grammy blow out the towering inferno of candles. It is a  challenge to comprehend that I was a young mother of three when I was diagnosed with leukemia at age 32 and here I am almost 50 years old, with grown children and a grandson. God certainly has blessed me with many more years of life than was originally predicted for me.

I received a Kindle for my birthday, so I have been busy downloading new books and mastering the Kindle. I also received many other great gifts and cards. Now I don't have to carry my book collection with me to the doctors' offices since I am usually reading 3 to 4 books plus my Bible at any given time. My Kindle will hold 3500 books, so I should never be without a book to fill my solitary moments waiting at doctors' offices!

Thank you for agreeing in prayer with us over these important requests.

Friday, November 19, 2010

Radiation Roller Coaster

Much has happened in the eleven days since beginning radiation. Many of the changes are difficult for me to interpret yet with such limited data on the use of splenic irradiation with leukemia. Amazingly, today's labs revealed a WBC (White Blood Count) of 6400 - I have never had a WBC that low (even after chemotherapy on 5 different conditions). A portion of my heart wants to leap with excitement at having a normal WBC, yet, I know it is far too early for celebrations. Radiation was again canceled today due to my counts being too low.

Thus far, I have received (3) 50 cGy fractions last week and (1) 25 cGy fraction this week. The plan was for me to have received a cumulative dose of 300 cGy by today, however, I have only received 175 cGy due to the drastic changes in my counts.

I have concerns because it is not as if only the lymphocytes are being eradicated -- all of my counts continue to decrease - is this indicative of failure of the marrow? I am trying to uncover that answer. Of this week's scheduled 3 radiation fractions (doses), I only received a half dose (25 cGy) on Wednesday.

Today my hemoglobin is 3 points less than it was 11 days ago and my platelets are half of what they were 11 days ago. This concerns me that the marrow is struggling to produce blood components. With the loss of another point or so, discussions will begin on blood transfusions, which I hope to avoid due to past serious reactions to blood products. And my platelets are approaching levels, where my doctor has given me warnings not to get cut and to watch for abnormal bleeding since platelets clot our blood.

Last night, my NIH oncologist e-mailed me some information. It is intriguing, however, I have not yet determined what this development of extramedulary hematopoiesis (that he mentioned to me) could mean for me. Basically EMG is when the blood producing capabilites of the bone marrow are relocated to another area - Dr. M speculated that since my marrow is very hypercellular, that the spleen might now be operating as my marrow. Does this possibility mean that I should NOT be receiving splenic irradiation? Will my bone marrow function if the spleen has assumed the role of blood production? I am confused with some of this and need to focus on further research.

I always stand in amazement at the complexities of the human body. Our infinite minds simply cannot conquer all of the questions about the body's functioning, because we are not its Creator. God created the amazing human body and despite the best efforts of brilliant men and women, many questions about the human body never will be answered.

The one other positive lab report that I noted on the CBC today is that there is quite a change in the differential (a differential takes the white blood cells and details how many of each white blood cell line is present). Normally, I have 95 to 99 percent lymphocytes (remember B-lymphocytes are the cancerous cells in my body) and 1-5 percent neutrophils. Today, I have 69% lymphocytes, 29% neutrophils and the remainder in monos, baso, eos (and I usually do not have any of these white blood cell lines on the differential). So, despite the much lower WBC, I am not seriously neutropenic (ANC 1856).

My Absolute Lymphocyte Count (lymphocytes are cancerous) has decreased by 90 percent in 11 days - 43,262 to 4416. I wish I knew how many of these 40,000 lymphocytes were B-Cells and how many were T-Cells (non-cancerous).

We rechecked my immunoglobulins (another measurement of immune function) on Wednesday (IgG, IgA, IgM) and they had improved somewhat since beginning radiation. That was encouraging.

The nausea and fatigue have not been as debilitating this week as last (lower dose) but they are still present and infringing on my quality of life. Given my low energy, I have a seven-day timeline designed to help me have a Thanksgiving dinner on the table by Thursday!

I have been so pleased with the radiation oncologist and his team. He meets with me everyday that I have radiation and is thoughtful and conservative about deciding when/if I will receive the radiation dose. Today, he told me, "Stacie, you told me how you have always really responded to any treatment and how cautiously we would have to proceed - were you right about that!"

And after he and I had reviewed the labs and pondered our next steps, he said, "Wait a minute, I have to check something." And he and some staff returned with a birthday present and card for me. Can you believe that? I wanted to cry. They gave me a garden stone that has HOPE engraved in it. :-)

Tonight I was pondering the complexities and unknowns with this treatment. It came to me, that I am on a radiation bus ride and God is the Bus Driver. At times, fear attempts to creep onto this bus ride with me and tempts me to jump out the door and off the radiation bus. However, if I am truly trusting this "Bus Driver", I will just remain on the "bus" and trust Him to deliver me to my ultimate destination. If I was on a bus, I would not have to know all of the details, routes, directions, and stops because the bus driver would have all of that information and I could sleep all the way to my destination and that driver would deliver me. Why should this "ride" be any different? I do not have all of the answers, details, outcomes, or facts about this radiation, yet, if I am trusting God to drive me through it, I will have to sit back and trust Him. That is what I am reminding myself daily.

Please pray:

-That God will protect me from infections.
-That God will continue to bless my medical team with the wisdom that they need to make the best recommendations for me.
-That God will restore all of my counts to normal levels.
-That no matter where my body is producing blood cells for me (marrow, spleen), that God can work all of that together for good to help me and not harm me.
-That God will allow me to feel better.

Monday, November 15, 2010

Day Four Radiation: Cancelled

I went to radiation today and my blood counts were too low to receive today's treatment. Day Four Radiation: Cancelled! My radiation oncologist called me back and I knew it was not good news because I usually see him after the radiation. He said he had already planned to cut the dose by half today to 25 cGy (based on Friday's counts), but with the counts declining still, we discussed my options and decided to cancel today's treatment.

To me, we need to know if marrow failure has been induced - if these counts continue to decline without radiation, I am going to be quite concerned and will request a bone marrow biopsy (one must be desperate for information to request this painful procedure). Although the counts are low, I know that I can survive with them at these levels -  I don't intend to keep forging ahead with radiation and risk marrow failure where my counts will no longer support human life. I won't be surprised if radiation is delayed again on Wednesday.

The radiation oncologist was concerned about how I am feeling - the uric acid level was improved, so he said the nausea and fatigue don't appear to be tumor lysis driven, but he ordered a CMP on Wednesday to look at those counts. He told me that he will go to the ends of the earth to help me. He is a very kind doctor and I believe he is watching out for my well-being. He gave me a prescription for anti-nausea medicine, however, I plan to continue with my holistic approach to treating the ongoing nausea (Sea Bands, crystallized ginger, and ginger ale) unless the nausea worsens and demands stronger treatment.

Sunday, November 14, 2010

Radiation Day Three: Update Delayed

I have not felt well since Friday's third radiation treatment, thus the delay with the update. Nausea has struck and even using my ginger and Sea Bands has done little to relieve it. I have also been very, very tired. I have remained in my pajamas all weekend, which I rarely ever will do.

On Friday, my labs revealed that all of my counts had worsened. This is concerning as we are treading a fine line of using the radiation to eradicate leukemia cells without further harming my bone marrow. White cells, red cells, hemoglobin, platelets - all had declined. I was quite neutropenic (low white cells that fight infection), so I was instructed to begin three days of Neupogen injections.

My creatinine level worsened (measure of kidney function), so that is a bit concerning. We know that my left kidney is in the radiation field and is being irradiated along with the spleen. I realized this week how difficult my decision making process has become when I choose to irradiate a perfectly normal kidney in order to attempt to improve my health.

I have e-mailed my radiation oncologist to inquire if I have already reached the point of needing to reduce the radiation dosage from 50 cGy to 25 cGy? The other option I have pondered is if I could continue with the larger dose, but transition to two treatments (versus three) per week.

Please keep me in your prayers. Hopefully, my counts will improve tomorrow.

Wednesday, November 10, 2010

Radiation Day Two

ZAP! NUKE! This afternoon, I received my second dose of splenic irradiation. Earlier in the day I spoke with my long-time NIH physician (Dr. M). I believe he is pleased how this treatment has been managed and is optimistic with me that I might benefit from the radiation. We discussed the value of this treatment being written up as a case study for the medical journals. There is limited, current data on this type of leukemia being treated with splenic irradiation. I told my radiation oncologist today what Dr. M had stated and he replied, "What else needs written up for the journals is how you have grabbed this bull by the horns, educated yourself, plotted your own treatment courses and survived for over 14 years!"

I believe this will be the most difficult of all of the treatments I have received to determine if and when and how it has benefited me. Today, after one fraction (session) of radiation, my total WBC (White Blood Count) dropped from 44,600 (normal WBC is 5000-10,000) to 29,000. That is a substantial decline. Hemoglobin declined (not such a good sign) by a point and my platelets increased (good sign). It is far too early to evaluate if I am improving. When I calculated the absolute numbers of lymphocytes (most of my B lynmphocytes are cancerous white blood cells; T lymphocytes are white cells I always need to increase), the ALC (Absolute Lymphocyte Count) declined from 43,262 to 27,342. Hopefully, these 15,000+ cells were all cancerous lymphocytes!

It will be a delicate balance of eradicating leukemia without damaging my limited marrow function. I must totally trust God with such intricate details! Tonight, I am a bit nauseated. The radiation oncologist told me today that the spleen is a large field to radiate, so he anticipates nausea for me. The left kidney is in the radiation field, so I know that it is being irradiated, as well. Please pray that my kidney function will be protected.

After radiation, I saw my family physician and had my electro-acupuncture. I will share my laugh of the day. You might recall the "Radiation Princess" post from Sunday that described my costume with fluorescent green highlights, lipstick and nail polish. After three days of nail polish remover and every other cleaner known to mankind, my nails remain stained from the green polish - they actually have a bluish tinge. My nurse came into the room and when she looked down, she shockingly said, "Doctor, come here and see Stacie's nail beds - they are blue!" She was truly concerned something was wrong and I began laughing and told her it was no lack of oxygen causing the  blue tinge, but the residue from my Harvest Party cosmetics!

I will try to post on Friday after my third day of radiation. Watch for this impressive medical outcome coming to a medical journal near you! Thank you for your prayers.

Monday, November 8, 2010

Day One Radiation: Over!


Thank you for your prayers today. Dad, Mom and I left home at 7:30 AM and Kevin and I returned home at 5:30 PM. IVIG went well today and our Nurse Practitioner daughter spent the day with me and brought me a healthy vegetarian lunch to enjoy. At the end of the day, our daughter who is the dietitian at the hospital where the cancer center is located, stopped by and the twins went with me to Day One of radiation. Well, more specifically, they sat in the waiting room - I guess they didn't embrace the idea of going into the treatment room with me to be nuked! Where is their sense of adventure? Our youngest daughter checked in with phone calls and sending me "medicine" (aka pics of Lil Man) to my cell phone.

Speaking of "nuked", last night our family held our annual Fall Costume Party and Bonfire. I decided that the opportunity to dress as the "Radiation Princess" might only present itself once in a lifetime. So I purchased a long, flowing black wig with fluorescent highlights. I added fluorescent green nail polish and lipstick. I printed radiation warning signs off of the Internet and onto iron-on transfer paper and ironed them all over my clothes (See Photo Above). I told my oncology nurses this morning that if I had not received IVIG all day before radiation, the "Radiation Princess" might have shown up for Day One of radiation. The nurse told me, "If you had walked in like that, Stac, we would have thought you finally cracked!"

After the many times I have received treatment for the leukemia, the first radiation was a bit anti-climatic. The actual radiation process is completely painless. I thought I might feel warmth on my skin since I was told that I might develop like a sunburn on my skin from the treatments and I have to apply aloe vera gel twice daily. But I felt nothing. My son-in-law had uploaded my favorite praise and worship music on my smart phone and I put in my ear buds, held an anointed prayer cloth from Israel in my hands, and prayed for the few minutes that the radiation was administered. The bulk of the time was spent with the radiation technicians placing me in the precise position for the radiation. We are talking moving me by centimeters until my tattoo markings line up specifically with their lasers and other placement techniques.

The radiation oncologist told me that side effects will be cumulative as the amount of radiation I have received increases. He tended to think by next week, we will need to begin watching my counts more closely. My counts were a bit lower today and I was slightly neutropenic, so I am hopeful that the counts will improve and not nose-dive. Again, the doctor mentioned the possibility of fatigue, nausea, diarrhea and skin irritation. I am focused on the benefits - not side effects - nuking leukemia cells and driving them from my spleen, lymph nodes, bone marrow and blood. I pray this radiation has the ability of a smart bomb and can hone in on the leukemia cells, annihilate them, and leave no collateral damage. That is how I am envisioning this attack that we have launched.

So far tonight, the only thing I can report is a nagging unrest. The first drips of chemotherapy into my veins triggered an unexpected flow of tears and emotions over eight years ago. Radiation is a new territory for me to explore and I believe there is always some unrest with the unknown. And although my limited, physical mind does not know or understand everything that is happening with the radiation, my spiritual mind is trusting that the God who created my body is still in control.

Interestingly, this morning, the manager of the cancer infusion center approached me and asked me to participate in a study being conducted by a local university. The study, "Spirituality and Cancer" sounded intriguing to me, so I signed the consent form. One of the principal investigators arrived with questionnaires in tow. I spent an hour or two this morning completing them - the entire time I was being reminded of what a tremendous role God has played in my life and my cancer journey. The investigator returned and asked to proceed and complete a 30 minute interview, which is also part of the study. So, for 30 minutes, I sat and shared about the Lord and all the many ways He has guided, blessed, comforted, strengthened and healed me during this journey. Upon reflection, I realized this God-opportunity came on just the right day as it provided a time of distraction for me as I awaited my first radiation treatment. I was able to share about the Lord in a very unique manner. I am blessed.

Sunday, November 7, 2010

Prayers Requested

I type on the eve of an important day of my leukemia journey. Tomorrow, after I receive my eight-hour IVIG treatment at the cancer center, I will go to the radiation center for my first treatment. In 14 years of leukemia, I have not received radiation. With the onslaught of new chemotherapies and immunotherapies, the use of radiation with this leukemia, has lost favor. However, in my opinion (and the opinions of my most respected physicians), I believe it still possesses value for some patients such as myself. We know that almost any standard chemotherapy will not be survivable for me. We know that all oral and IV medications pose the risk of anaphylactic drug reactions for me. Yet, we also are vividly aware that if I do not reduce my tumor load, that I am going to lose this hard-fought battle.

For most of the two or three years that I have researched the use of splenic irradiation, I believed that it really only had potential for palliative relief of pain from the very enlarged spleen. Now, we believe that by reducing the spleen and tumor load, that my rate of infections could decrease. That would be a welcome improvement after this past year. A recent German study also showed other biological mechanisms by which the radiation has the potential to reduce the size of the spleen and the enlarged lymph nodes as well as reducing the tumor load in the bone marrow. Complete hematological remissions have been achieved with splenic irradiation - that is my hope and prayer for me.

Tomorrow will be an arduous day. I would have preferred to remain busy all day before the first radiation treatment versus sitting in the IV chair all day - with nothing much else to do but pray and ponder the possibilities. Learning that the walls of the room where I will receive my treatments are made of 3 feet of steel, did little to comfort me. It takes 3 feet of steel to protect everyone else from the very rays that my body will be absorbing.

Some have asked for specific prayers that I need - here are those needs:
-For the radiation to help me and not to harm me
-For me to FINALLY achieve a complete remission - doubtful from a medical viewpoint, but not impossible with God!
-For God to protect my very compromised bone marrow from bone marrow failure and for my blood counts to return to normal
-For God to protect my immune system and guard me from infections
-For wisdom and compassion for those who will be treating me - wisdom especially those who will calculate the doses of radiation
-For the side effects to be minimal so that I can continue with my daily tasks and enjoy my upcoming birthday and holidays

Other patients have also inquired about what alternative therapies I will use while undergoing radiation. The additions to my already extensive alternative protocol include:

-Shark liver oil / Alkyglycerols (Just call me JAWS!). This can prevent severe reduction in WBC during radiation. It has immune enhancing effects and can increase survival of radiation patients.
-Ginger (anti-nausea)
-Grapeseed Extract
-Extra Vitamin C. Reduces side effects for radiation patients.
-Extra beta-carotene
-Maitake MD Fraction
-Vitamin A - can enhance the effectiveness of radiation. Increases the sensitivity of the cancerous cells to the radiation. Improved survival rates.

Of what I was already using, that also has value with radiation:
-Electroacupuncture
-Curcumin. Helps to protect healthy cells from the side effects of radiation.
-Green Tea Extract. Makes cancer cells more sensitive to radiation.
-Aged Garlic
-Selenium
-Whey Protein. Helps to reduce pain during radiation.
-Fish Oil. Improves selective killing of cancer by radiation.
-Probiotics
-Coenzyme Q10
-Melatonin. Longer survival rates and fewer side effects with radiation.
-Barley Grass / Green Drinks - twice daily.

(Supplement guidance from my own family physician and Drs. Keith Block and Micheal Murray - both experts in the field of integrative oncology.)

Saturday, November 6, 2010

Worth Pondering

"Heaven is not here, it's There. If we were given all we wanted here, our hearts would settle for this world rather than the next. God is forever luring us up and away from this one,
wooing us to Himself and His still invisible Kingdom,
where we will certainly find what we so keenly long for."

--Elisabeth Elliot

"There is nothing that we can see on earth which does not either show the wretchedness of man or the mercy of God. One either sees the powerlessness of man without God, or the strength of man with God."

--Blaise Pascal

"The greatest proof of Christianity for others is not how far a man can logically analyze his reasons for believing, but how far in practice he will stake his life on his belief."

--T.S. Eliot

"The tragedy of life and of the world is not that men do not know God; the tragedy is that, knowing Him, they still insist on going their own way."

--William Barclay

"Our life is full of brokenness - broken relationships, broken promises, broken expectations. How can we live with that brokenness without becoming bitter and resentful except by returning again and again to God's faithful presence in our lives."

--Henri Nouwen

Friday, November 5, 2010

Radiation Approved

After a half dozen or so e-mails from my insurance case manager, she finally called at 1 PM today to tell me that the reviewing physician had deemed me worthy of receiving the radiation! She is such a blessing to help me - even on her day off. Thanks, Melanie!

I spent about an hour today at the Radiation Center to finalize all of the plans. More permanent tattoos were applied. My abdomen looks like a treasure map with "X" truly marking the spot! The two radiation technologists worked and double checked all of my measurements of the field. They took additional x-rays for the physicist to use to finalize the dosing plans. They took photographs of the field and walked me through the entire process.

I decided I needed some photos of the equipment for the enquiring minds who want to see what I will be doing, beginning on Monday. This photo is of the radiation equipment - a linear accelerator. Since I will receive radiation from the front and back of my spleen, this machine can rotate all around this table. The table can lift and lower. I just lay there and try not to move. You can see at the one end of the (very firm) table, the support block that my head and neck are put in to get me in a stabilized position. This is what they made for me last week.


This second photograph is my viewpoint from the bed when the machine is not over me - I asked for a mountain view room! For the life of me, I don't comprehend why cancer patients have to look at fake scenery. Almost every cancer center I have gone to, has had some sort of these visual distractions. That is the only terminology I can think of that adequately describes it to me. When I am receiving chemotherapy or radiation, looking at a mountain view or gazing up through a canopy of autumn leaves does not make me imagine for one instant that I am strolling through the park or traversing the mountains. Maybe visualization like that works for some, but I am a black and white type personality and I see it for what it is - a looming piece of equipment about to zap my body with radiation - not a piece of equipment that is minimized by the mountain view. Enjoy the scenery!










Thursday, November 4, 2010

No Insurance Response: May I Vent Tonight?

The insurance promised that our expedited request for approval for the splenic irradiation would be in our hands by 4 PM today. It is almost 9 PM and I just heard from my insurance case manager and the reviewing physician still has not given her an answer. A doctor in Arizona has information from several of my trusted physicians, trying to determine without ever seeing me, if I am deserving of his approval for the radiation. This entire process is maddening for patients and physicians alike. In a million years, no one will ever convince me that with medical matters as serious as this, that a long-distance physician who looks at a pile of papers is competent and capable to determine if I receive any given treatment or not.

Appointments await me TOMORROW to complete the planning and simulation session for the radiation. I suppose the reviewing physician will wait until the very last moment and notify me. If the decision is to decline payment for the radiation, I will be forced to cancel the appointments at the last minute tomorrow.

In the last year, this process has denied syringes that I require for the two IV medications to be inserted into my sinuses. So, we are paying for the syringes ($100 per month). If my doctor had not researched and found this method for me to receive these two drugs, the insurance would be paying for two daily IV's instead - and I can guarantee them that two daily IV's would cost them much more than $100 per month. Multiple appeals have failed.

The reviewing physician initially rejected the IV antifungal that I needed for a pulmonary fungal infection. My doctors battled an appeal through and did obtain coverage for the IV's.

The insurance has twice rejected the requests to pay for the milk that has benefited my immune system. I have not been in the hospital or for outpatient IV's for almost a month now that I have been drinking milk. Given that the last week in ICU cost the insurance over $30,000, one would think that purchasing milk for me would be a no-brainer.

And now we sit and wait to see what treatment the physician reviewer deems me worthy of receiving. I am so disappointed at what health care in America is coming to - and it is only going to worsen. Perhaps you or a loved one has never been faced with these scenarios, but take my word, if you are faced with a serious illness, you will be shocked at what the "insurance gods" will put you through. I am knowledgeable about my condition and care and I am very organized. Yet, at times, all of this insurance mayhem is overwhelming.

I am certain, on paper, my life does not look worthy of salvaging with another expensive treatment when the reviewer reads terminology such as "end stage disease" and "a year to months to live" in my records.

Just ask Lil Man what his Grammy's life is worth!

Tuesday, November 2, 2010

Inching Toward Radiation: November 2, 2010

All of my clinical information is in the hands of the insurance physician reviewer. They have requested an expedited review and supposedly, Anthem BCBS will give us an answer on the splenic irradiation before late Thursday. Friday afternoon is when my next appointment at the radiation oncologist's office is scheduled. The remainder of the radiation planning and simulation before Monday's treatment will occur on Friday.

The CT Scan revealed somethings that we knew and somethings that we did not know. My spleen, as expected, is "markedly enlarged" - a normal spleen is around 8-9 cm in length and my spleen was around 28 cm in length. The amount of lymphadenopathy (enlarged lymph nodes) was also increased from my 2009 CT Scan, mainly the retroperitoneal (back of the abdomen). My non-medical daughter said that readers don't understand the medical terms, so I have been trying to provide descriptions/definititions.

What we did not know is that the CT revealed an internal hernia. My doctor believes that the very enlarged spleen probably caused this hernia. As long as I do not develop a bowel obstruction, we will just keep an eye on the internal hernia. Also noted, were a pericardial effusion and a pleural effusion (right lung). Basically these terms refer to fluid around my heart and lung. I need to do further research to determine the causes of these findings and what needs to be done. I have read that fungal infections and the leukemia itself can cause these symptoms. Hopefully, neither of these causes will be discovered as the causes of these effusions. (Maybe I have just sprung a leak!)

I continue to have additional days without IV antibiotics or antifungals. My Mighty Milk Experiment #2 combined with the herbal additions seem to be working for me. I still have had times of fever but they are not consistent.

I received my first of four doses of the HiB vaccine on Monday and that went well, without reactions. And I did not require Neupogen injections this past week.

Sunday, October 31, 2010

Fall Foliage

You Were Working for Me

You Were Working For Me
Mark Bishop
Centergy Music/Possum Run Music BMI

Verse 1
She picked the tip up off the table,
Wiped her forehead with her sleeve.
Another tray of dirty dishes, and it's time for her to leave.
She clocks out and says 'good night ya'll',
Looks out at the road ahead.
When she pulls into the drive, it's time to put the kids in bed.

Verse 2
I hope you know your mother loves you.
Oh you know, we know you do.
We tried to clean the house, and we did all our homework too.
Mom, I hope you feel real special, cause anyone can see,
You're not working for the money, you're working for a family.

Chorus
Yeah, you're working for me.
And you're paying the price.
And I'll never forget how much you gave,
or how much you sacrificed.
And I'm gonna pay you back someday, you'll see.
For all that you gave up, when you were working for me.

Verse 3
One last time she goes to visit, and she's holding back the tears.
The doctor says, "It won't be long. Your mother's getting up in years."
I hope you know your daughter loves you,
Oh you know, I know you do.
She strokes her hair and smiles and holds her hand the whole night through.

Verse 4
Then somewhere in the morning, just before the break of day.
A mother's fingers lose their grip, and a last breath slips away.
And the hard life she held on to, she turns loose and lets it go.
Then a gentle voice says "Come on home, in case you didn't know."

2nd Chorus
You were working for me.
And you paid the price.
And I didn't forget how much you gave,
or how much you sacrificed.
Now it's time to pay you back,
Oh you're gonna see.
For all that you gave up,
When you were working for me.

Tag
And I know sometimes it seemed like you were working for free,
But you were working for me. You were working for me.

To View the Video go to: http://www.youtube.com/watch?v=rHx4tLdWRYA



Friday, October 29, 2010

Autumn colors

Marriage: For Better, For Worse

On the eve of our 28th wedding anniversary, the article below offers much good advice.  I am well aware that 28 years is almost an eternity when compared to the trend of disposable marriages. Divorce looms, waiting to pounce, on marriages everyday, everywhere.

Recently, I read this very good article on the http://www.marriagetoday.com/ website. I enjoy this couple's teaching and believe that a nugget of their advice can improve almost any marriage. Check out their site.

I realize that many readers will be divorced and this post is no way in judgment of you. God is forgiving of all of our failures and sins and divorce is no exception.

The Lie of Easy Divorce
(And the Research That Proves It)

For those who consider divorce to be an easy answer to marriage problems - there is an increasing amount of evidence to the contrary. First of all, the damage done by divorce is devastating. Research has proven that the damage of divorce on children not only lasts for a lifetime, but is also transferred to their children. Adults tell me that going through a divorce is worse than death. Businesses experience up to two years in lost productivity from employees going through a divorce.

Also, more recent research proves that the vast majority of people who divorce are no happier than unhappy couples who stay married. The reason for this is because when divorce occurs - you simply exchange one set of problems for new ones.

Another fascinating discovery is that among unhappy couples who stayed married five years - later almost eighty percent rated their marriages as happy. The greatest turnaround was reported by couples who were the unhappiest five years earlier.

No fault divorce came to us with the promise that it would make divorce less common and less painful. What a lie! Divorce has become an epidemic and it is still devastating. The legal conveniences of no fault divorce can in no way counteract the serious emotional consequences on adults and children.

In fact, the greatest marriages I've ever seen are those that have gone through very difficult times and have lasted through them.

Every marriage goes through difficult times. In fact, the greatest marriages I've ever seen are those that have gone through very difficult times and have lasted through them. This is certainly true for Karen and me. We have now been married for thirty-three years and have a great marriage. On the way here, we've had some very tough times and were on the brink of divorce almost thirty years ago. The choice to stay together has paid huge dividends.

If you want to have a happy life and marriage - lose the word divorce and don't believe the lie that it brings happiness. In most cases, divorce is the answer to marriage problems in the same way that cutting your arm off is the answer to a broken bone.

Our society is reeling under the effects of broken homes and broken hearts. Many today are fearful of getting married because of all the pain they see. The truth is - marriage works when you enter into it with a firm commitment. The vows we say during our wedding ceremonies are designed for this purpose. When we say, "For better or worse, richer or poorer, in sickness and in health, til death do us part...", we are making an essential commitment that lays a firm foundation for a successful marriage.

These vows worked for many years in our country until the lie of easy divorce took hold. Since then, it has been a trail of tears. Spare yourself the heartache. Tough it out...and when the devil tells you the lie about easy divorce - don't believe it.

Journey Toward Radiation

I continue on my road to radiation. Today, I had my CT for the initial planning for splenic irradiation - I am sporting some new tattoos on my stomach (never thought I would have a tattoo) but these are necessary to position me in the exact position for the radiation each time.

They formed a structure (block) that will stabilize my body during the irradiation. That was fascinating - initially this material looked and felt like a bean bag- the radiation techs pushed and pulled and molded this bean bag around me - then they suctioned the air out of the bag and it became as hard as concrete. Pretty nifty! Next Friday, I will return for my final session of planning and a simulation session. Tentatively, November 8th is my "go" date" if insurance approves.

Here is today's funny story that I should not tell on myself. I was returning home from the radiation appointment today. I was going to pick up one of our sons-in-law on my way. I turned off a main street and normally go through two intersections and then turn north to reach their home. I was extremely tired and a bit unnerved still from the prospect of radiation and I only drove through one intersection and turned right.

Not long after turning, a man in a truck slowed down and he was shouting out his window at me and waving his arms. I dismissed him as a possible lunatic and kept driving. Then a car passed and kept honking and honking at me. They didn't look like family or friends trying to gain my attention, so I kept driving. Suddenly, I looked up and I was going the wrong way on a one way street. I had driven six blocks going the wrong direction! It was just the icing on the cake for the day. I laughed and laughed outloud and probably looked like a lunatic myself. Thank God I didn't kill someone or myself. God even protects us when we are ignorant - always good to know!

Thursday, October 28, 2010

Splenic Irradiation Update: October 28, 2010

I am home, exhausted both physically and emotionally. I left home at 2 for my appointment with the radiation oncologist and did not leave there until after 5 then had dinner and went to the cancer support group and arrived home at 9.

What a compassionate, kind, educated man was the radiation oncologist. His training was completed at Mayo Clinic. Not only was his compassion amazing, he was very informative and helpful. He had reviewed almost a 5" binder of my records (and asked to keep it to finish his review). He had reviewed studies, etc. that I provided. He is in agreement that splenic irradiation is my best (and perhaps only) treatment option. I will have a planning CT tomorrow and then he will present the information to my insurance case manager. She is going to expedite the physician review, so we anticipate an answer by mid-week. November 8th is the target date to begin my radiation and I will go three times per week for 4-8 weeks, depending how well I tolerate it. 600 cGy is the goal we have for my cumulative dose of radiation.

After much discussion and debate, the radiation oncologist believes that I should begin with the 50 cGy fractions (versus the 25 cGy fractions). A fraction is a radiation dose/session. He said perhaps we will maintain that dose for a week but if I am tolerating it, we may continue. He will perform a CBC, CMP and uric acid check M-W-F on radiation days to watch for cytopenias (low platelets, neutrophils, hemoglobin) and indications of tumor lysis syndrome (possible with radiation as with chemo/immunotherapy). Tumor lysis syndrome can develop when the kill-off cancer cells is rapid and the kidneys cannot filter the killed cells and this can be fatal. Many people are able to take a medication to prevent it (Allopurinol) but I cannot take it because of my past drug reactions.

He said he would probably recommend anti-nausea medicines and I told him I have never taken them with chemo and would prefer to use my Sea-Bands and ginger. He agreed. He said he had no problem with my alternative treatments/supplements. Hurrah!

He said side effects could include nausea and fatigue but it will depend upon how low the spleen is when we begin radiation. He expects 1 month after completion of radiation for total recovery.

I had an interesting experience this evening - a God experience, I would say. Our daughter is a dietitian at the hospital where I will receive radiation. She was leading the Cancer Support Group tonight, so I attended. I asked myself why I was going because I have never gone to a cancer support group. Now I know why! The physicist (calculates radiation doses, etc.) came before the meeting and asked if anyone was going to begin radiation and he took me through all of the computer systems, the IMRT planning program, the equipment, etc. It was a helpful behind the scenes view of the radiation department. My daughter told him I was her Mom and asked him to take good care of me.

I shocked myself. When we went into the actual radiation room, my legs began shaking, my palms were sweaty and I felt like I was going to burst into tears. It was just a rush of emotion that I have never experienced except on the first day of chemo in 2002.

When the meeting was over, I went with my daughter to her office. The CEO and COO of the hospital were there and she introduced me to them.

I am a bit concerned - temperature was 99 today at their office. I had green drainage from sinuses and lungs today. They discontinued the Neupogen today because after 3 of the 5 injections, my ANC (Absolute Neutrophil Count - neutrophils fight infection) went from 500 to 10,000! Pretty good production for marrow operating on 2% without leukemia infiltration.

I am so exhausted but wanted to post my update. I have deposited all of this at the foot of the cross. I believe and am asking God if I am not to proceed with radiation that he use an insurance rejection to stop it. I will wait patiently.

Wednesday, October 27, 2010

Global Repentance

I Chronicles 16:23-24
“Sing to the LORD, all the earth; proclaim his salvation day after day. Declare his glory among the nations, his marvelous deeds among all peoples.”

I continue to be amazed at how God can take a humble blog and use it to touch hearts around the globe. I am able to check the country of origination of people reading my blog (through my blog statistics). I sit here tonight, praying, typing, asking God for the words to write. Knowing that He has beloved children around the world, who read my blog, intensifies my desire and purpose to deliver knowledge of God through this blog.
2 Timothy 4:17
“But the Lord stood at my side and gave me strength, so that through me the message might be fully proclaimed and all might hear it…”

Readers in Russia, China, India, United Arab Emirates, and dozens of other countries are as dear to God as I am to Him. He is no respector of people – He loves me no more than He loves YOU! He desires a personal relationship with each of His children, no matter their nationality, their ventures into false religion, or their lack of knowledge of Him. Perhaps owning or reading a Bible is a life-risking scenario for some of these dear people. Yet, we are told that the Gospel will be taken to every inch of the planet earth before Christ returns. He is not willing for any soul to perish and spend eternity in the pits of hell. He is full of compassion and grace. God is not just the God of America!

For those without a Bible, I share these divinely inspired Words from God with you. Read them. Pray them. Absorb them into your mind and soul. Allow them to transform your life. Find repentance and forgiveness in these Words. Realize that God is God of all – American, Russian, Indian, China, Iranian, North Korean – there is not one that He does not love and desire to be his or her Savior and extend the gift of eternal life in Heaven.

Exodus 19:5
“…Although the whole earth is mine”

II Kings 19:19
“Now, O LORD our God, deliver us from his hand, so that all kingdoms on earth may know that you alone, O LORD, are God.”

Nehemiah 9:6
“You alone are the LORD. You made the heavens, even the highest heavens, and all their starry host, the earth and all that is on it, the seas and all that is in them. You give life to everything, and the multitudes of heaven worship you.”

Psalm 86:9
“All the nations you have made will come and worship before you, O Lord; they will bring glory to your name.”

Ezekiel 36:23
“I will show the holiness of my great name, which has been profaned among the nations, the name you have profaned among them. Then the nations will know that I am the LORD, declares the Sovereign LORD, when I show myself holy through you before their eyes.”

Daniel 7:13-14
“In my vision at night I looked, and there before me was one like a son of man, coming with the clouds of heaven. He approached the Ancient of Days and was led into his presence. He was given authority, glory and sovereign power; all peoples, nations and men of every language worshiped him…”

Habakkuk 2:14
“For the earth will be filled with the knowledge of the glory of the LORD, as the waters cover the sea.”

Zechariah 14:9
“The LORD will be king over the whole earth. On that day there will be one LORD, and his name the only name.”

Matthew 28:19
“Therefore go and make disciples of all nations, baptizing them in the name of the Father and of the Son and of the Holy Spirit”

Mark 13:10
"And the gospel must first be preached to all nations.”

John 3:16-17
“For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life. For God did not send his Son into the world to condemn the world, but to save the world through him.”

1 Corinthians 10:26
“…"The earth is the Lord's, and everything in it.”

2 Corinthians 5:19
“that God was reconciling the world to himself in Christ...”

Philippians 2:10
“that at the name of Jesus every knee should bow, in heaven and on earth and under the earth”

Colossians 1:6
“… All over the world this gospel is bearing fruit and growing…”

I John 4:14
“And we have seen and testify that the Father has sent his Son to be the Savior of the world.”

Jude 1:25
“to the only God our Savior be glory, majesty, power and authority, through Jesus Christ our Lord, before all ages, now and forevermore! Amen.”

Perhaps a reader – American or Russian, Indian or Chinese – has never paused for a moment to consider the greatness of the universe, created by the hand of God. Perhaps he has not considered the complexities of his own body and how God’s created man (and woman) hold mysteries that the minds of medicine will never understand or comprehend. Perhaps he believes his sins are too wretched for a perfect God to love, accept, and forgive him. Perhaps he has been blinded by false religions and teachings that have separated him from God. Perhaps a Bible will never rest in the hands of someone in a country where Christians are persecuted.

There are no “perhaps” with God – He will see to it that the Gospel is taken to the entire world and its inhabitants. He will forgive the most grievous of sins. He will flood a repentant heart with love and peace beyond description. He will love each one who seeks Him and finds Him. He will offer the gift of salvation – life eternal in Heaven when we depart from this earth. He will seek those who are lost.

In closing, consider Scripture from the Amplified translation (Matthew 18:11-14):

“For the Son of man came to save from the penalty of eternal death that which was lost.


What do you think? If a man has a hundred sheep, and one of them has gone astray and gets lost, will he not leave the ninety-nine on the mountain and go in search of the one that is lost?


And if it should be that he finds it, truly I say to you, He rejoices more over it than over the ninety-nine that did not get lost.


Just so it is not the will of My Father Who is in heaven that one of these little ones should be lost and perish.”

Lost sheep of the world, God the Shepherd is searching for YOU! Please pray this prayer of forgiveness and salvation:
Gracious Father,


I admit that I am a sinner. I am sorry for my sins. I believe that You sent Your Son, Jesus, to this earth to die on a cross for the sins of the world. Forgive me, Father. Come and live in my heart. I love You, Lord. I believe!

In Jesus’ Name I pray. AMEN.

(If you are a believer in Christ who reads this blog, please take a moment and post a comment with this post - words of encouragement and Scriptures to share with our brothers and sisters around the world.)

Pay Attention

Hebrews 2:1
“We must pay more careful attention, therefore, to what we have heard, so that we do not drift away.”

Do you sense yourself drifting away from God? Are the waves of life despair, doubt, and anger pulling you from the Source of your solutions? Hebrews 2:1 offers us succinct instruction as to what we should do to prevent such self-inflicted separation from God.

“Pay more careful attention” – once I received this instruction from His Word, my life changed. Careful, dedicated, focus study of God’s Words and time spent in prayer in His presence are life changing habits to develop. Guarding what words went into my eyes, ears, brain and ultimately my soul transformed my life. We cannot live victorious Christian lives and never spend a moment in His Word or in prayer.

I prefer the Amplified Bible’s version of Hebrews 4:12: “For the Word that God speaks is alive and full of power [making it active, operative, energizing, and effective]; it is sharper than any two-edged sword, penetrating to the dividing line of the breath of life (soul) and [the immortal] spirit, and of joints and marrow [of the deepest parts of our nature], exposing and sifting and analyzing and judging the very thoughts and purposes of the heart.”

When we do not realize the power and purposes of God’s Word, we cannot realize how to live our lives. His Word exposes sin in our lives and convicts our spirits when we make spiritual mistakes. His Word is “alive and full of power” – the bound, typed words of the Holy Bible are not like any other written words – they are “alive and full of power”. Power to change lives, relationships, eternal destinations and hearts – all are possible when we feast on the Word of God.

When we neglect our relationship with God – we will drift away. "Drift" has several definitions – move aimlessly, wander from set course or position, and change gradually. I believe each of these definitions defines specific aspects of our drifting and wandering from the Lord.

When we do not nurture our relationship with God, the Anchor of our soul is lifted and we began to float aimlessly. There is no purpose or direction for our lives. We sense emptiness in our souls. Life challenges become more impossible to handle without the help and guidance of the Holy Spirit.

God has set a specific purpose and path for each of our lives. Without daily time spent in Bible study and prayer, we begin to wander from our set paths. Wanderers do not have a destination, they meander through life aimlessly. And the enemy of our souls – the thief, Satan – prepares to pounce. John 10:10 states: “The thief does not come except to steal, and to kill, and to destroy. I have come that they may have life, and that they may have it more abundantly.”

God did not make the gift of salvation or a loving relationship with the God of the Universe to be difficult or impossible. Jesus came so that we may have life – true life – not just a physical existence but a spiritual, personal walk with God. He promises us abundant life – a well-supplied life. And I am not just suggesting material blessings although God tends to the needs of His own. A well-supplied life that is full and complete and a heart without emptiness is worth more than silver or gold. His peace being supplied in a stormy season of life is priceless. Guidance and discernment from the Holy Spirit or from reading His Holy Word is invaluable.

Are you ready to turn the tide of your life? Begin paying attention – not to your problems, selfish wishes and wants, life pleasures, or desires – but pay attention to God’s Word. You cannot turn the tide of your life alone – call upon the Captain of your life ship. Humble yourself before Him. Relinquish the trappings of this world. Realize how damaging sin is to your life. Repent. God is still in the business of forgiving the worst of sinners and softening the hardest of hearts.

An Update & Request for Prayer: October 27, 2010

Tomorrow is my appointment with the radiation oncologist. He is going to love my three typed pages of questions! I am praying for clarity and discernment.

I have been running fevers since Monday - the doctor believes it is from the Prevnar vaccine on Monday - babies run fevers with these same vaccines. So "Baby Stacie" who drinks her baby milk, now is running fevers with her baby vaccines. :-)

I have been having dizzy spells for a couple of months. Today the doctor diagnosed it as positional vertigo - it is caused by crystals lodging in a portion of the ear - she had several maneuvers that she taught me to try to at home for relief. I hope that will work and dislodge the crystals. I have had three near falls in the past week from these spells.

This is Day 3 of 5 of Neupogen injections - Neupogen always gives me bone pain but this round has been horrible. I wore multiple pain patches last night and still no relief. I was grateful today was acupuncture.

I will tell you a funny story about my acupuncture. To set the scenario for you - the table is raised up in the air approximately 5'.  I have 50 or 60 needles in me and the door is shut. Normally, the doctor gives me a

buzzer with a bell that I ring when my times goes off and then the nurse returns to remove the needles. My timer went off today and I realized - NO BUZZER. I started laughing to myself because I thought they are going to close the office and forget I am in here.  I thought about shouting, "HELP" but I knew that would panic my doctor and nurse and they would think I was dying and come running. Then I began screaming, "CHRIS" - my nurse's name. About every 5 minutes, I would yell "CHRIS". I debated if I could pole vault off the table with all those needles but knew with my back/hip pain so bad today I would probably kill myself. I continued to shout for the nurse. Finally she peaked in and said, "I'd swear someone was calling my name but I think it was the office music that was playing." HAHAHAHA. I told her my story and that I had been yelling for her for 30 minutes. We all had a good laugh.

Monday, October 25, 2010

What Motivates Me

A blog reader, whom I have never met, wrote:

I was thinking about how indominable you have been in the continuous battle your body has gone through for many many months now.I know that your faith has kept you strong, but I wish you would share with all of us what motivates you to keep going, where many others of faith would have decided to move on to the next level. If I were in your shoes, I don't think I would be as determined as you have been.

Yes, my love of God is my primary source of strength and ability to continue fighting this long, long battle. Never would an ounce of my flesh have been able to engage in this war against leukemia for over 14 years.

My love of family is another fundamental motivator. One day last month when most everything had gone horribly wrong from a medical perspective, I considered giving up and taking no further medical treatment. Quitting. Throwing in the towel. As I sat and pondered that option, I looked into the big brown eyes of my grandson who was sitting on my lap and I regrouped and put on my armor for another round of battles. How could I explain to him that his Grammy was a quitter? How could I look at our three daughters and tell them that life became too difficult for me - when I have raised them and taught them that "nothing is too difficult for God" to handle in our lives?

Obviously for me, moving onto my Heavenly Home is the easier of two paths that are before me - one path continues on this life journey that is fraught with pain and suffering. The other path leads to eternal life in Heaven that is overflowing with life, health, peace, and no suffering, pain, or sickness. Yet, for today, the people I love most reside on earth. And while I know that in Heaven, I will not shed a tear, I know that those I leave behind will hurt when I am gone. I have always put the needs of my family ahead of my own needs and wants, and I continue to do that with this life situation. If I was a selfish person, I believe I would discontinue all treatment sooner than later. However, since I have never been a selfish person, I continue to put what is best for my family over what is best for me.

Lastly, my love for life carries me through many difficult days. I have learned through these years with cancer to find the beauty in simple, everyday living. Azure blue skies, punctuated with the fluffiest white cotton clouds I have ever seen, caught my eyes just last week. The transitioning of seasons piques my interest more than ever before in my life. The golden-yellows of trees transitioning in the autumn chill beckons me outside to inhale the beauty of the Lord's Creation. And nothing like the winter's first snow of the season encourages me to focus not on the pain and suffering but to seek out the beauty and goodness of each day, of each moment.

An Update & Request for Prayer: October 25, 2010

I received my first of four Prevnar 13 (pneumococcal) vaccines this morning. The logic behind vaccinating me with childhood vaccines is if my immune system can mount some kind of response to the vaccine, it will provide me with some level of protection against pneumococcal infections. (Next Monday I will receive the first of four doses of the HiB vaccine). Tonight, I feel unwell, am running a fever, my arm is warm and tender. Yet, to me, this indicates that my poor immune system is mounting some type of response! I guess I will get my bottle of milk, take some infant Tylenol, snuggle up with my baby blanket and nurse my vaccine side effects (just kidding).

We learned that my ANC (Absolute Neutrophil Count) was 500 today - not a good level of neutrophils since 500 and below is the most serious level of neutropenia, so Kevin just left for the pharmacy to pick up the $4500 box of Neupogen injections and my $5000 refill of Posaconazole for the month. The prescription plan loves me on this week when we refill these two expensive drugs (along with five others) and have over $10,000 in prescription charges.


My platelets had dropped back down to the 80,000 range (under 100,000 indicates Stage IV leukemia), so the steroids' effect appears to be short-lived on my counts.

All of us were with our daughter at the Heart Walk on Saturday. She came down with strep throat yesterday (the down side of being a nurse practitioner, caring for sick people everyday). My family doctor just contacted me and said my infectious disease doctor wants me started on another antibiotic to protect me from strep - normally, we go to the hospital and take this drug (no desensitization but I have to be near the hospital). I am too tired and feel too lousy tonight, so I am going to say a prayer and take the first dose at home. Say a prayer that I will not have another drug reaction.

Talk about the fright of my life today - I saw the oncologist prior to my vaccine for labs and to review my flow cytometry report. He sat, pondering the report. He asked me a couple of questions about the past flow results and I pulled out my 2008 flow report from my OSU oncologist. He told me that he was going to have to do some research to figure out my report.

So I asked him to review it myself. He handed it to me and left the room. In the interpretation section of the report, it stated, "Tranformation likely. More testing is indicated." My heart just sunk and I knew immediately that the splenic irradiation was now a mute issue and I knew I would die quickly because I could not survive the treatment for Richter's. Suddenly, I glanced back down at the report and realized, IT WAS NOT MY REPORT! It was L's report - someone had placed her cover sheet on my other pages. For a moment I whispered a prayer of thanksgiving to God but before I could utter all of the words of my prayer, my heart and thoughts returned to L. - yes, I had not received this life-changing news, but someone else was about to learn of her poor prognosis. So, please pray for L. - a woman I have never met, but whom is in need of our prayers.

I dropped off all of my records at the radiation oncologist's office when I left the cancer center. They laughed when they saw my 5" binder of records and I told them that those were the most pertinent records - the rest I had left in two four-drawer file cabinets! Keeping up with 14 years of medical records is no easy task.

Late today, we learned that the insurance has rejected again our request to cover the milk. This was quite disappointing. I will look into the appeal process, but to date, I have never won an appeal against them. So sad, given the positive results we have observed!

Sunday, October 24, 2010

Brushing Up On Flu Facts

All of my doctors recommend that everyone who spends time with me or in our home receive the flu vaccine. This is referred to as “herd immunity”. Immunize the “herd” (sorry family and friends for this reference to you as the “herd”) to protect me. The logic is if all of my family and friends stay healthy, I will have a higher potential to remain well. Again, this is going to have to be a very personal decision for each of my loved ones and some may choose not to vaccinate. I have read studies touting 5000 IU of daily Vitamin D3 as being a good defender of the flu. However, do not be offended, when I may not be able to be around crowds or groups of loved ones. The most frightening part of the flu to me is the fact that for 24 hours prior to ANY symptom, you will be contagious. A well-meaning family member or friend, feeling perfectly well, could visit me and infect me and note develop the first flu symptom until it is too late.

We are beginning to formulate a plan of protection for me. Many of these tips will help to protect each of you and those you most love from contracting this threatening virus:

1. Be aware of the flu outbreak levels in your state. Each Friday, I check the CDC’s flu map that shows the level of outbreaks in each state. Once these levels reach REGIONAL or WIDESPREAD, I retreat to staying at home. To check that website, visit: http://www.cdc.gov/flu .This is updated each week. Normally these REGIONAL and WIDESPREAD outbreaks occur in December and last through March – times I spend my days at home.

2. Learn to live like I do everyday. Purell your hands after you touch anything in public including others' hands, grocery carts, money, menus, salt and pepper shakers, buffet utensils, door knobs, elevator buttons. Use your shirt tail or jacket to push buttons, open doors, or when touching other “public” areas. It is much easier to PREVENT the flu rather than to TREAT it.

3. Wash your hands frequently. Cough and sneeze into your elbow – not into your hands where you will spread the germs.

4. Know the flu symptoms like the back of your hand. It is too risky to ignore a symptom as a “cold” or “allergies” or other excuses that you have used in the past. The key to surviving the flu virus is early recognition of the symptoms. Tamiflu, an antiviral medication, is again being recommended as the antiviral of choice for the 2010-2011 flu season. This is a prescription medication. There is a second antiviral with some effect against this year's flu strains – Relenza. If you require an antiviral, discuss your options with your physician. I cannot take Relenza because of having asthma and it is an inhaled drug.

5. The symptoms we cannot ignore according to the CDC are: fever, cough, sore throat, runny or stuffy nose, body aches, headache, chills and fatigue. Flu can be a deadly illness, especially for the elderly, children and immune compromised patients.

6. More important information about the flu is available at: http://www.cdc.gov/flu.

7. If you or your family is exposed to the flu it is vital that you tell me immediately and do not come around me. Be alert, vigilant and diligent to listen for word that anyone around you has been exposed to the flu or who has developed the virus.

8. If you develop any of the symptoms on the above list, STAY HOME. I am not the only immune compromised person in the community. Going to church, work, or other public spaces with these symptoms is unfair to those around you.

I am not a physician. Each person needs to formulate an anti-flu plan this year for his or her family. Discuss this information with your physicians. I do ask each of you who might come into contact with me, to take this threat very seriously and do all that you can to protect me. My body cannot defend me. Immunizations cannot defend me. I must rely upon God’s protection and the diligence of my family and friends to keep me protected and flu-free this year.