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


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:
-Curcumin. Helps to protect healthy cells from the side effects of radiation.
-Green Tea Extract. Makes cancer cells more sensitive to radiation.
-Aged Garlic
-Whey Protein. Helps to reduce pain during radiation.
-Fish Oil. Improves selective killing of cancer by radiation.
-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.