Monday, August 31, 2009
I was scheduled to see my doctor at 8 AM this morning. I was concerned that I would be admitted to the hospital. However, my fever was improved this morning. My doctor told me that my ear and sinuses looked better but still were infected. The fungal infection has actually worsened and spread a bit on my skin.
My CBC results were encouraging - the WBC (15,900) had declined after increasing last week, which is always a positive sign that infection is responding to the arsenal of antibiotics, antifungals and antivirals I am taking. My hemoglobin was the best it has been in a very long time - 12.2! My platelets had improved (111,000)after crashing by over 40,000 last week. Often times with serious infection, my damaged bone marrow will struggle and we will see steep declines in my hemoglobin and platelets.
I am waiting to hear from my oncologist to see if we are going to proceed on Wednesday and Thursday with Week 11 of treatment or if we will postpone by a week due to the infections. I will keep everyone updated.
Please continue to uphold me in your prayers - believing that this long summer of treatment will have long lasting, positive effects. Also, please pray that my immune system will be restored.
Lastly, I ask that you begin praying for my son-in-law's father, Larry. He will have major open heart surgery this Wednesday (September 2). He is in need of 5-7 bypasses. Please pray that all health care professionals will be at their best as the operate on him; that he will emerge from the surgery, whole and improved; that his wife, Sally, and his family will be strengthened and prepared for the recovery process; and that God will be glorified through this difficult time.
Friday, August 28, 2009
Remember, My child, that I have redeemed you; forgiven you; and equipped you to face life difficulties without having to fear.
I have called you by your name;
Remember, My child, that I know you intimately and all of your needs are foremost in My thoughts.
You are Mine.
Remember, My child, I am Your Savior. Personal. Attentive. Near to you when you cry out to me in the midnight hours.
2 When you pass through the waters, I will be with you;
Remember, My child, My Word tells you that you WILL face difficult situations – not IF. Yet, I will always be there with you.
And through the rivers, they shall not overflow you.
Remember, My child, those difficult situations will not overcome you, as long as you are walking near to Me, trusting Me, and believing Me.
When you walk through the fire, you shall not be burned,
Remember, My child, how my children walked through the fires of the fiery furnace and exited unscathed. The fires of your life will not burn you either.
Nor shall the flame scorch you.
Remember, My child, My protection covers you and those you love.
3 For I am the LORD your God,
Remember, My child, there is NO God except for me. I AM the great I AM.
The Holy One of Israel, your Savior;
Remember, My child, I am your Savior, your Deliverer, your Healer, your Hope.
5 Fear not, for I am with you;
Remember, My child, you must not fear. If you are truly believing and trusting in Me and My Word, fear has no place in your life.
My trusted family physician left the hospital to meet me at her office first thing this morning. I have a bad sinus infection, ear infection, eye infection, and fungal skin infection. My doctor ordered labs including blood cultures, CMV Antigen and collected a sputum sample for culturing. She prescribed three more antibiotics to add to the Cipro I am taking - Biaxin oral, Tobramycin to inject into the sinus cavities and a Bactroban nasal spray. My doctor also prescribed a topical antifungal to add to the oral antifungal I am taking (Posaconazole). My lungs were wheezy but she did not detect any pneumonia sounds, so I will add an inhaler to open my airways.
I am anxious to learn my lab results. The only bright side of these infections is that infection will often cause declines in my platelets and hemoglobin. This would be a far better explanation for my poor lab results this week (versus worsening of the leukemia).
Thursday, August 27, 2009
I was a bit dehydrated from the diarrhea, so I knew that vein access would be a repeated challenge today. My platelets declined by another 10,000 since Monday - I am quite concerned about this, especially in the presence of a nose bleed. Since last week my platelets have decreased from 126,000 to 83,000.
We appreciate your continued prayers.
Wednesday, August 26, 2009
8 I have set the LORD always before me;
Because He is at my right hand I shall not be moved.
9 Therefore my heart is glad, and my glory rejoices;
My flesh also will rest in hope.
10 For You will not leave my soul in Sheol,
Nor will You allow Your Holy One to see corruption.
11 You will show me the path of life;
In Your presence is fullness of joy;
At Your right hand are pleasures forevermore.
Psalm 16:8-11 (The Message Version)
Day and night I'll stick with GOD;
I've got a good thing going and I'm not letting go.
9-10 I'm happy from the inside out,
and from the outside in, I'm firmly formed.
You canceled my ticket to hell—
that's not my destination!
11 Now you've got my feet on the life path,
all radiant from the shining of your face.
Ever since you took my hand,
I'm on the right way.
I live my life to the best of my ability, walking with God and trusting Him. He’s my closest confidant and I’m not giving up on Him! He walks steadfastly with me. Given that knowledge means that I am not going to be moved to depression or despair when negative reports are given to me. My happiness and peace generate from internal sources – the indwelling of the Holy Spirit in my life and the consumption of His Word – joy and hope are not dictated by external sources such as cancer and its associated negative news and reports.
Since I breathed my first breath as a tiny babe in Christ, He has been showing me the way – the one and only true way – to the path of life eternal. I shall stroll this pathway until I breathe my last breat on earth as His child.
Despite challenging days and negative reports, I shall not be moved. Today, a day I would prefer to file away in the mind’s recesses, will not move me. With His help and constant abiding in my life, I know I am on the right pathway, even if all of the worldly signs along the way state differently.
The exterior circumstances of today ……. I continue to receive Rituxan as I type. My veins did not choose to cooperate this morning. I blew out four veins before the nurse finally located a ripe target. A few hours into the Rituxan infusion, I went to the restroom and the IV infiltrated into the tissue of my arm (meaning the vein burst open and the medication infiltrated into the surrounding tissue). We returned to the quest to locate a cooperating vein – we have located one now but it is not in a location where it can be left in for tomorrow.
Today, I am not going to report on the results of my lab tests. I did not receive good reports, so I simply request your continued prayers. I asked the Holy Spirit to guide me to a Scripture to comfort and uplift me as my mind and flesh fail me (Psalm 16). I know how to keep my spirit strong in the midst of bad reports – turn to His Word.
I will return in the morning for another full day of Rituxan.
Tuesday, August 25, 2009
Please pray for me tomorrow as I begin Week Two of the second cycle of Rituxan for the summer. If I do not see some additional improvement in the size of these remaining enlarged lymph nodes and my lymphocyte percentage, I may need to reconsider proceeding with additional treatment with this particular drug.
Your prayers continue to be precious to me .......
Monday, August 24, 2009
Adam Sandler’s movie, Happy Gilmore, depicts what a rogue, renegade golfer can do to the dignified sport of golfing. Sunday afternoon, our youngest twin daughter and her husband called and invited my husband and me to go golfing. Between the four of us, I believe approximately three rounds of golf had been played. Novices by anyone’s description!
Planning to stay in my pajamas for a day of rest before a treatment-filled week, at first I declined. Then the beautiful 70 degree temperatures, light breeze and sunshine began to lure my thoughts to the greens. My husband agreed and before I knew it, we were at the golf course.
It took little time before the “Gilmores” kicked into action. Golf balls ricocheted off of trees, but fortunately did not rebound off the heads of other golfers. My daughter and I decided our game philosophy would be to pick the clubs according to our favorite numbers versus what conditions warranted. She and I excelled at driving the golf carts. When our husbands evacuated the carts to swing away, we played cat and mouse games – racing each other around bushes and shrubs – full speed ahead in the carts one direction and then switching directions at the next foliage find. My Dad, a golfer who always took the game seriously, would have been mortified had he joined our funny foursome.
For the life of me, I cannot figure out why hitting that little white ball was so difficult. I entirely missed the ball on several swings. Mom later informed me that Dad said these strokes were called “whiffs” and they should be counted as a stroke. Not in my life – in my book of golf rules, whiffs are considered practice strokes, generous gifts that the golfer presents to herself. On one stroke, as our husbands searched for a golf ball that “somehow” had made its way into a small pond circled by cattails and ornamental grasses, I swung away and hit the golf cart. Laughter does not enhance one’s golf swing. The harder my daughter and I laughed, the more “whiffing” we did.
This morning on the way to the cancer center, Dad was driving, and we were discussing my golf game (doesn't that phrase sound like I am the real deal?) I told him that many of my shots went straight out across the grass, not gently loping through the air like Tiger's shots do. Dad informed me those shots are called "worm burners". I really liked that terminology and could just envision night crawlers tucked away in in the blades of grass, ducking for cover as my accelerating golf ball skimmed across the greens.
For those of you who have watched Happy Gilmore, you might recall the scene where Happy’s caddy was washing his undergarments in the ball washer on the golf course. Before we left home, our daughter called, giggling, and told me to sneak out a pair of my husband’s BVD’s (not DVD’s) and bring them with me. I did not recall this scene from the movie, but obviously she and her husband did. With predictability, we arrived at the sixth hole and there was a ball washer (I am not certain why these are needed – my balls, being whiffed at most of the time, did not become dirty and if they were dirty, they would end up in the ponds and then there was no need for washing). Our daughter, with her eyes twinkling and mischief mounting in her mind, dug into my handbag, eradicated the BVD’s and headed to the ball washer to “plant” them there and reenact the Happy Gilmore travesty.
Tiger Woods would not have appreciated following us around the course, but I believe I have an inner-golfer screaming to be discovered. I told my husband with a few lessons from Dad (who firmly informed me that players like us need to be on driving ranges, not golf courses to learn the game), we could be playing in tournaments! When I e-mailed this photo to our daughter, we both agreed that her swing looks like that of a professional and no one would have believed our antics on the golf course from looking at that photograph. Oh, how looks can be deceiving – very deceiving!
As he spoke with us today, he told my parents, "Stacie and I are mutual learners." I grabbed onto that terminology and digested it after he left the infusion room. As most of my family and friends know, I have read more about this form of leukemia than most any doctor will in his lifetime. Why? Because it is the ONLY cancer I am addressing. Especially local oncologists do not have the time to research hundreds of different types of cancers to remain abreast on the latest research developments. I have mini-medical degrees in hematology, oncology, and immunology. My life and disease have not afforded me the opportunity to ignore the shattering of my health. Leukemia has dictated that I delve into medical journals and libraries to seek answers to questions that my doctors do not have the time to research and answer. So, when my local oncologist coined and communicated this phrase - that we (he and I) are mutual learners, I smiled.
We have learned from each other. I have heard of several opportunities when he has taken something that I had learned about this leukemia and he applied it to the life of another leukemia patient. I am proud and pleased to know that. He has taught me the value of being compassionate and caring, never showing that he is concerned about a patient. Whether that is the best way to address the dying patient or not, he always musters words of hope and encoruagement to the most dire cancer case. He has taught me to remain positive even when circumstances may dictate negative dwelling on the disease.
Mutual learners - perhaps this is a concept that needs to be taught to medical professionals. Battling a deadly disease requires ammunition from both sides of the battle - from the patient AND the physician.
This isolating of America began many years ago. If you consider homes constructed in the early and mid 1900’s, many had large front porches. Families escaped summer heat and humidity and evacuated to their front porches. Neighbors were united in front porch communities. Nowadays, families cocoon when they return home in the evenings.
In addition to online social networks, other technology advances have drawn us backward as a society and made us a nation of isolationists. Recently, a local news reporter decided to remain inside his home for a month to prove that he could order everything online that he might require for daily living. He survived quite well, as any of us could, especially if we have an online career or can work from the comforts of home. And you call this progress? I don’t find it exceptionally healthy for us to isolate ourselves and live lives positioned behind laptops, blackberries and other computer devices.
Once upon a time, customers traveled to their neighborhood banks and performed bank transactions. They knew and trusted the tellers handling their money and investments. Today, online banking eliminates the need for trips to the bank or any interaction with a human bank teller. In another day and age, customers carried their written prescriptions to their friendly pharmacist and then returned to purchase their pills. Today, I order my prescriptions online and can have them delivered via mail – another personal interaction severed by the Internet. And remember the dear librarian who would help to search card catalogs for that specific book needed for a research project? Now, a wealth of knowledge beyond comprehension is available online with search engines replacing the human searching card catalogs for specific journal articles or books.
I notice our mailbox at the street has fewer and fewer pieces of mail each year. Friends and family send their correspondence to my In Box. More and more advertisements and bills are directed to my computer. It makes me ponder if Mr. Postman will even have a job in a few years? With a touch of the keyboard, the United States Postal Service allows me to purchase stamps and other shipping supplies.
I cannot imagine past generations of grandparents and great-grandparents ever being able to envision the life we are living. Social networking as we know it is a paradox when compared to the networking of which our grandparents were partakers. Their generation was the true social networkers – they knew the names and concerns of their neighbors. They could recognize a neighbor’s voice on a party line. They felt welcome and comfortable enough to walk to a neighbors’ home and ask to borrow sugar or flour or eggs. Their neighborhoods and their lives intertwined in an attempt to survive difficult times.
Although this age of online social networks allows us to learn a lot – I am concerned we learn a lot about nothing of life-changing importance. Let us ask ourselves if all of the time we are dedicating to online activities is time that we will regret on our death beds.
Labs were drawn earlier today but I doubt that I have those results today. I am eager to see if the first week of this second cycle of treatment has made any headway against the leukemic beast.
I am especially tired today - I have not allowed myself enough time for rest and relaxation during this summer's treatment marathon. It is surreal that this is the tenth week of treatment that I have received this summer. I have determined I can either lay in bed and give my body the rest that it craves while not having any kind of life. Or I can get out and live life fully and be totally pooped out! Looks as though I'm choosing the pooped out philosophy!
I endeavor to ask the Holy Spirit to guide me to the particular passages that the Lord would have me read and meditate on at that particular moment in time. On that night last week, I turned to the book of Daniel. I am always inspired and uplifted when I read of Daniel and his faithful friends’ faith – no threat to their lives – whether in a fiery furnace or a lion’s den – could force them to turn against their God. So the God-breathed Words on the pages quickly burned into my mind and spirit and I knew that the particular pains that were confronting me that night were nothing for God to correct.
I continued to read Daniel’s explanation of the “writing on the wall” to the disobedient Belshazzar. His reflections were filled with revelations only available through the Holy Spirit speaking to a faithful heart such as Daniel’s. One particular observation struck a chord in my spirit as I read it: “….and the God who holds your breath in His hand and owns all your ways, you have not glorified” (Daniel 5:23).
What an intimate and personal God we serve! If we believe for a moment we are anything apart from Him, we are sorely mistaken. If He so chooses, he can snuff out our lives in a flash –after all, He “holds our breath in His hand”. Try living without breaths – not possible. If we think for a moment that God is not aware of our thoughts or deeds or lives, be reminded of his personal involvement in our lives. He “owns all our ways”. Go ahead and keep telling yourself that you are the captain of your life ship – God knows differently.
For some, such as Belshazzar, this revelation that God holds our breath in His hands and own our ways was deeply troubling. After all, Belshazzar was deeply troubled, his countenance changed and later that evening, he was killed. For the individual lacking salvation and the indwelling of the Holy Spirit in his or her life, Daniels’ report injects havoc in the heart.
However, for me and for every other believer of Jesus Christ, these words are extremely comforting. On that night infused with fear and pain last week, these words caused my spirit to still. It no longer mattered the source or severity of the pains. The God of the Universe was holding my breath in the palm of His hand. If that night was the last night those breaths would be available to me, He would seize them and in a nanosecond or less, I would be absent from this body but present with Him.
Even as Christians, it takes time in His Word and in His presence to fully comprehend that we are not in control of our lives. Leukemia has made me fully aware of the brevity of life and that each moment must be guarded. And His Word has once again reminded me that He is in control of today and all of our tomorrows.
Precious jewels to treasure
Husband, children, grandchild
Onyx, jasper, diamonds
Priceless treasures to cherish
Parents, grandparents, relatives
Friends and family
On Saturday, around thirty of my dearest family members and friends gathered for my 13th Cancer-Versary and Coming off Chemo (NOT) Celebration. Our youngest daughter had planned this festivity prior to the decision that I was going to continue with additional treatment,
God blessed me with weather that was divine – no humidity, the temperature was around 70 degrees, and blue skies with sunshine. Between sweltering summer humidity and pesky bugs, I am not able to spend a great deal of time outside. Such was not the case on Saturday. God has orchestrated this perfect day for a perfect time of reflection and merriment. And somehow, the mosquitoes and flies of summer celebrations were on hiatus.
Scrumptious food, fellowship, and fun were enjoyed by all. Reflections on my life, this cancer journey, and God’s faithfulness punctuated our thoughts and dialogues. Lil Man entertained everyone with his antics and gummy grin. Pink and yellow decorations of the colors of summer dotted the green grasses and azure blue sky. Laughter flowed through the buoyant breeze.
My life although ravaged by cancer is rich and full and beautiful. Never a woman fond of worldly treasures and gems, I realized as I gazed across the
Yesterday, we celebrated the 69th birthday of my Dad. We are grateful for each year we are able to share with him. He defeated cancer several years ago and has endured double hip replacement.
His life has been filled with providing for and caring for his family. His earlier years were encompassed with athletics. He excelled in basketball, golf, and baseball. The Cincinnati Reds pursued him after his high school graduation and he had the opportunity to play for the Reds. He excelled as a pitcher and spent many hours improving my softball pitching skills. After work, we would often venture outside to my pitching mound and he would advise me, as well as coaching our teams.
Dad often drives me to my treatments so that I won’t have to drive home under the influence of multiple drugs. He’s traveled to the NIH for consultations with me. He’s been one of my many sojourners who have traveled this cancer journey with me. Thanks, Dad and Happy Birthday!
Friday, August 21, 2009
The rainbow shall be in the cloud, and I will look on it to remember the everlasting covenant between God and every living creature of all flesh that is on the earth.
Like the appearance of a rainbow in a cloud on a rainy day, so was the appearance of the brightness all around it. This was the appearance of the likeness of the glory of the LORD.
And He who sat there was like a jasper and a sardius stone in appearance; and there was a rainbow around the throne, in appearance like an emerald.
I saw still another mighty angel coming down from heaven, clothed with a cloud. And a rainbow was on his head, his face was like the sun, and his feet like pillars of fire.
Photograph copyright Stacie
Thursday, August 20, 2009
I have had diarrhea and nausea since last night, so that has not been especially enjoyable. I have had a great deal of pain from the Neupogen, too. I appreciate all of your prayers - I believe they kept today's reaction from progressing to a more serious reaction.
Next week will be a challenge - IVIG treatment all day on Monday and my treatments all day Wednesday and Thursday. Toss in caring for Lil Man all day Tuesday and Friday and it looks like a well-booked calendar!
My WBC had increased a bit on yesterday's lab reports but my other counts were fairly stable. I am pondering how the WBC can increase while still taking treatment to lower it?
Such is the conjecture of many cancer patients. While I am the unusual “bird” who maintains my head held far above the sand or anything else that tries to conceal the truth of the predator leukemia’s attack on my body, many cancer patients simply want to force their heads deep into the sand, buried from bad reports, prognosis, and attacks of cancer on their bodies. I would venture to estimate that most cancer patients I encounter do not even know the name of the chemotherapy agents they are infusing into their bodies. I cannot fathom having this type of blind trust in the recommendations of others.
Personally, I cannot imagine not knowing everything I can about this foe. My decisiveness early on to confront leukemia head-on has proven to be a successful scheme to battling cancer. Although, at times, it would have been mentally more tolerable to know less about my health challenges, I believe with my whole heart, that my involvement in every decision, situation, and treatment has contributed to my longevity.
No matter how deep in the sand a cancer patient “buries” her head, cancer is still going to be on the attack. We cannot run from cancer. We cannot hide from cancer. Burying my head in the sand and avoiding face-to-face confrontation with the written words of negative reports will not make them improve. Burying my head in the sand and pretending that cancer does not exist, will not make it go away. Burying my head in the sands of denial, will not make life with cancer easier to endure. I am thankful I am not an ostrich!
Wednesday, August 19, 2009
Maybe you can't put the word remission down after your name, but you can put all kinds of other words down, like...
ALWAYS THINKING OF OTHERS
GRAMMIE OF LIL MAN
AND MY PERSONAL FAVORITE.....AMAZING!!!!!!!!!!!!!!!!!!
13 Years Ago Today My Family's Life was Changed
August 19, 1996 is a day that remains vivid in memory-even though it was 13 years ago. Today our family will celebrate the life of my Mom-who has battled leukemia for 13 years. On this exact date 13 years ago our family received news that would forever, and to this day, impact and change all of our lives. I am now 25 years old and was only 12 at the time-yet the memories, the words, the emotions, and the sadness from that day is still in my memories. This day in my past is one that will never leave me. It is with strong emotion and a sad heart that I type this to share. I do it, however, to express the importance of love, family, and faith.
On this date 13 years ago, I recall my 2 sisters and I were staying with our grandparents while Mom and Dad went to the oncologist. Even though I was 12 at the time-I understood the seriousness of the “C” word-cancer. It was on this day when my parents pulled into the driveway that changed my life…forever and to this very day! I remember seeing my Dad with an ever-serious look on his face and tears in my Mom’s eyes as she looked at my sisters and me and said nothing. There was a split second where our family was still and silent. Then in a tearful voice my Mom nodded and said, “Yes.” Nothing else was said. My entire family (Dad, Mom, my 2 sisters, and me) stood in the driveway, sobbed, and held each other. I remember the weather, I remember what my Mom was wearing-I remember EVERYTHING about this day as if it occurred yesterday. As I reflect, it is THIS very moment in our life that forever changed the course of all of our lives. It happened just that fast. This should remind us all of just how precious life is.
Over the course of the past 13 years my family and I have been through ups and downs, highs and lows, mountains and valleys, and on a constant roller-coaster ride of emotions that we call OUR life! My family has many blessings. We have a strong family support, strong faith, everything material one could want, and friends. It is a daily challenge and battle our family faces EVERY day with my Mom. There is not a minute that goes by that this isn’t in my mind and saddens my heart. I will never get used to my Mom being so sick, I will never accept it, and I will never stop hoping for her. All I can do is cope with it. There are some situations in life that this is all you can do-and this is one of them.
In close, I want everyone to remember life is full of struggles. That is an unavoidable concept. Some of us face more than others. It is how we deal with these struggles that determines the outcome. My family is the perfect example of this. There have been such emotional and sad times that my family could have easily been torn apart. Not only were we grieving as a family but we also all grieve on a daily basis in our own way. However, we have pulled together for 13 years and have become stronger than any family I know. My family will never give up on my Mom. We believe for her healing, we believe one day we will see her well, and will never lose the faith to stop believing that. Keep her in your prayers as she is currently going through chemo.
Also…today we will CELEBRATE the LIFE God has blessed my Mom with and continues to bless her with. Today is one of the saddest days in the year for me yet I am full of happiness that my Mom is still here. My Mom wasn’t even supposed to see my sisters and me graduate high school. She has seen us all do that, graduate college, all of us finishing up grad school, walked down the aisle at all of our weddings, and seen her first grandchild. I know this isn’t the end for her. I believe and pray everyday my Dad and Mom grow old together and she sees her great-grandchildren!
I copied and pasted the comments people have posted today on Facebook:
that is a wonderful trbute to your mom, Steph. She is like a second mom to me, since I was adopted into your family a long time ago! I love you all so much. When I need to look to someone with steadfast faith and courage, I look at Stacie. Praise God for the life she has been given, and Praise God for the life she still has to live!
Hey Stephanie I will be praying for your family today!!
Beautiful family picture!!
she is very lucky, you all are! I lost my dad to cancer last year. I will keep you all in my prayers :)
don't know how you manage to do it all and be it all - you work in Indy, go to school, you are a wife and you still a supportive daughter
I am praying that you will remember today may not be your favorite day but a day where you can turn the bad into good by rejoicing that your mother is here with you.
look at it this way after 13 years you are still blessed with her in your life
Hey Steph....I will be praying for you about tomorrow. God has a way of bringing us through things if we let him. IM praying for you...be blessed....
Hey Stephanie...you will be in my thoughts and prayers tomorrow...let me know if you need anything...don't hesitate to ask....
Stephanie, I am sitting her at my desk and speechless from reading your note about your Mom and her illness that has plagued your family for so long. You are a wonderful daughter....your devotion has helped your Mom through a horrible time in her life....in all your lives. Don't let this day be sad for you...look at it as the day your family became closer, your faith became stronger and you became the wonderful young woman you are today. It's terrible that your family is dealing with this awful dreaded disease but continue to make the most of your time together and give her the strength she needs. Lean on that sweet husband of yours...that's why he's there! You're a great girl and you should be proud of yourself. I know your Mom is. --Billie
We are thinking of you at work today and will see you Thursday. Your mother is in my prayers. "I know the Lord is with YOU. YOU will not be shaken because He is with YOU." Psalm 16:8.
I understand it being the hardest day. I think that every time April comes along, on the other hand I see it like this HE has accomplished so much. Like your mom. She has survived 13 years of it. I know its tough but she has made it through and to me though its hard it is a hugh victory. She was able to see all 3 of her girls get married. Be able to see her 1st grandchild. Stephanie I don't think God is Finished with her yet. I believe she will accomplish so mush more. She is a strong courageous woman. Just thought you should know regardless you are in my thoughts your family always has been. Love ya girl.
Steph, I'm thinking of your Mom today. Let me know if I can help on any way.
Praying for your Mom today.
Thinking of your family 2day.
stephanie,i know your family is strong. i will be keeping your mom in my prayers.
Steph, I know how much you love your mother. I could see it on your face when you were at school and something was going on with her. I never even had to ask. I know your family has had a long struggle. Keeping you and yours in my prayers. We need to plan a lunch date with Carrie and Andrew soon!
Grant it, Jesus, is my plea.
Daily walking close to Thee,
Let it be, dear Lord, let it be.
I am weak, but Thou art strong
Jesus, keep me from all wrong.
I'll be satisfied as long
As I walk let me walk close to Thee
In this world of toil and snares,
If I falter, Lord, who cares?
Who but Thee my burden shares?
None but Thee, oh Lord, none but Thee.
When my feeble life is o’er
Time for me will be more no more
Guide me gently, safely o’er
To Thy kingdom shore to Thy shore.
When my weary life is o'er
Pain and suffering are no more.
Who will lead me safely o'er
Canaan's shore, That sweet Canaan's shore.
What’s better than 12 years of life? A baker’s dozen years of life!
HAPPY BAKERS DOZEN!
Just wanted to let you know that I love you very much and am so proud of you for being such a strong, brave, amazing woman for the past 13 years. If anyone knows how to beat the odds, it’s you.
This day always makes me think back to 13 years ago … (don’t start crying) … but I was 11 and will forever remember you and dad pulling in the driveway. You were wearing a jean dress (smile!) and probably those big plastic glasses, too (smile!)We all met you outside. Not knowing what to tell our three little faces, you just nodded your head yes. And we automatically knew what it meant. That was a sad day but … it is in the past. Your life is now – everyday that you are here is a blessing and I know that you will be here tomorrow and the next day … and the next day.
Just think, a year ago you were on oxygen and I was pregnant and we both weighed like 32498230 more pounds. We’re both looking and feeling a whole lot better this year! And man is to thank!
As much as God loves you, He knows we need you here on earth with us. Especially your littlest fan – he needs you more than you know. So don’t think today about what you faced 13 years ago. Think about what you will face 13 years from now. We will be planning man's 13th birthday … our little man – a TEENager. YIKES!
I love you. Thank you for being the bravest mom EVER.
Written by Daughter "K", mother of Lil Man
hi gram gram
It id me …man. Happy turdteenth versary! Me so glad u hear. Mommom loves me a lot but I no u doo tooooo.
I new u bee at my firwst birfday. U be at all my birfdays cause I say pwayers four u.
I ur biggest fan.
We be gramgram & binkerton for life!
Me wuv u wif my hole hart!
man (aka Lil Man)
My opinion of August 19th is that of a love-hate relationship. My emotions oscillate between two very different viewpoints of this date. When my calendar alerts me that August 19th has arrived, a part of me loathes the day, another part loves the day. Let me explain.
I hate leukemia. Always have. Always will. A portion of my psyche detests everything associated with August 19th. I was handed a piece of paper on that day that stated the findings of a bone marrow biopsy – I had leukemia. The date, the emotions, death suddenly lurching at me, the hurting faces of my daughters - all of this anguish floods back into my mind each year on August 19th. The events and emotions of that day, thirteen years ago, are cemented in my memory, etched with the cancer events of the past thirteen years.
Daily, the villain leukemia lurks over my shoulder, taunting me and tainting the lives of my loved ones. For over 4700 mornings, I have awakened to face another day with this cancer companion. I ponder if a life lived with the weight of cancer for this many years has been a life worth the living? Family members would probably vote with a resounding YES! My vote would vacillate between YES and NO. You might question why I would even doubt my life being worth living. But as a Child of God,if you consider that I am secure in the knowledge that when I breathe my last breath, that my life is not ending – I will be standing on the brink of eternity in Heaven, then you might understand my answers. You cannot argue, even if you are one of my biggest fans, that Heaven doesn’t sound much better than sickness and suffering.
Yet, just as I detest leukemia and the disfigurement of my life that it has caused, there is sound rationale for celebrating this day. After all, how many cancer warriors do you know who have lived for thirteen years with cancer? I know I have been blessed with life that the most brilliant scientific minds did not foresee. Three to five years life expectancy is what we were told shortly after my diagnosis. Point to be learned – don’t ever rely on mortal man to predict your life expectancy – that decision rests solely with God.
What are the reasons that make me love to celebrate this day? Without a doubt, the most important benefit has been the development of my faith walk with God. Leukemia has driven me to the foot of the cross over and over and over again. I have had to grasp His Word when I knew nothing else would spare my life. The Holy Spirit has been an ever-present companion of Comfort and Guidance. These realizations became much clearer to me as a cancer warrior. First, I realized even more than ever before that I wanted to live a life pleasing to Him because I never know at what moment I might face Jesus face to face to offer an account of my life, thoughts, deeds, and motives. Also, battling a disease with no medical cure made me quickly realize that I must depend upon the God who can perform the impossible. When doctors and medication cannot cure me or lengthen my life, I must rely on the supernatural promises of my Father. The irony of these writings is that none of us know when our tomorrow might not arrive – and we should each be living each day as if tomorrow we will meet our Savior. Be prepared. Be saved and secure in your eternal destiny. Be certain that your todays are not being wasted on thoughts and activities that pull you away from the Savior.
These thirteen years, although replete with distress and misery, have allowed me the blessing to witness our three daughters grow, mature, graduate, and marry. Most of these life events would not have been possible for me to partake in had the three to five years’ life prognosis been correct. And now, a new generation has emerged with our baby grandson’s arrival. I have cherished each life event that has been given to me – tomorrow is a gift that I hold dear. Without this cancer reminder, I, like most healthy people, would have enjoyed life events such as graduations, grandchildren, and growing older, without savoring them to the depth that I savor them. Take great delight in today. Don’t rush through tomorrow. Grasp each moment you have with your loved ones and tightly hold onto those moments, conversations, and memories.
The love-hate cancer relationship – as you can perceive, there is much to love and much to hate about this day. As one of my daughters told me today, “I ‘guess’I say congratulations.” Today presents a quagmire of emotions and reflections for my family and me. Out of this cancer quagmire, I will continue to seek the positive aspects of being a cancer warrior. I will continue to love and trust and serve my Savior. I will continue to savor each moment of time that a family member shares with me. I will continue to live, not just subsist and exist, but live each day to its fullest potential. I challenge you to do the same.
Tuesday, August 18, 2009
I was first examined by the Physician's Assistant. She remarked how delighted she was to see how much better I looked than at my previous visit. She was pleased with the improvements in my blood counts - I was not neutropenic and my white blood count, hemoglobin and platelets were all improved (although my pesky lymphocytes remain quite elevated). She only detected three enlarged lymph nodes upon physical examination (they can hide and some are detectable by CT Scan and not on examination). My spleen - much smaller - was the star of the show and both the PA and doctor marveled at how it has decreased in size. My doctor asked if I had donated my spleen to the OSU football team.
Dr. B. was very happy at my progress. As I have previously reported, I did not achieve a complete remission, but a partial remission (if these improvements remain stable for two or more months). All of my doctors have been impressed that this treatment cycle commenced without reaction, complication or infection. Dr. B. felt that I have three options at this time: wait until the cancer begins to worsen again and then repeat treatment with Rituxan; attempt consolidation therapy with Revlimid; or continue with Rituxan therapy.
After much prayer, consulting with all of my most trusted physicians, and considering the risks and benefits, I believe the scales tip slightly in favor of continuing with four more weeks of Rituxan therapy (Wednesdays and Thursdays each week, beginning tomorrow).
I ask for continued prayers for no reactions, infections, or complications. I will not be receiving tomorrow's first dose in ICU, so please pray that I will not have adverse effects often associated with first infusions.
My mind and body want to run far from all things treatment related. I am supposed to be having my "Coming off Chemo Party" on Saturday night. My flesh just wants to watch my baby grandson, hold him in my arms versus being attached to more IV's. Yet, a part of my spirit is whispering to me to continue treatment and I know to always allow my spirit to rule over my flesh.
The chemo chair is reserved for 8:15 AM tomorrow.
Sunday, August 16, 2009
On the Travel Channel and on Food Network, we had watched features on a restaurant in the German Villege section of Columbus, Ohio. Schmidt's Restuarant and Sausage Haus was founded in 1886. And with a history and publicity like this, we decided we would dare to locate it on this return trip to Columbus.
Not far off the beaten path of interstate hectiness, we were pleased to discover streets of red brick, worn and beaten down by centuries of travel. The entrance was pleasant and a German lad and las display, with faces cut out, greeted us. My cohort in this criminal eating spree (also known as my husband) failed to join me for a photo showing him in suspendered knickers, so all I have to share is a faceless photo of the couple.
A large wooden handle on the door didn't appear to be a handle and we looked at each other and opened it anyway. Later, we learned that this handle was from their original late 1800's packing house and was the wooden lard paddle.
The Travel Channel featured Schmidt's famous sausages - the Bahama Mama - to be specific. My husband opted for this choice and being less of a carnivore than he, I chose cabbage rolls, green beans with spatzle and German potato salad. Spicy and unique, the food was served with waitresses clad in German dresses, high stockings and clogs.
The Food Network featured Schmidt's Jumbo Cream Puffs. I was stuffed with the German cuisine, so my husband ordered one of these delicacies and I asked the waitress for an extra plate so that I could sample his Cream Puff. Unfortunately, the efficient waitress carved up the cream puff, so my photo opportunity of a cream puff the size of my head was lost.
Snapping photos of covered bridges in the woods or other discreet family photos never seem to bother my husband. My food photos in a restaurant were a bit unsettling to him. I replied, "Haven't you seen the advertisements for the summer hit Julie and Julia? Blogging on food is in vogue. I am trying to keep my blog readers updated on delicacies outside the realm of carrot juice and flax seeds."
We continued onto our hotel. This evening, still a bit stuffed with the stuffed Bavarian Cabbage Rolls, I did not want a heavy dinner. Recalling that a Cheesecake Factory is around the corner from our hotel, my husband left to bring back a decadent Godiva Chocolate Cheesecake. Talk about throwing myself into sugar shock, this cheesecake did just that. Sprinkled with dark Godiva cocoa, the creamy Godiva cheesecake filling rested on a decadent dark chocolate crust. Add some whipped cream and a piece of foil-wrapped Godiva Chocolate, close your eyes and you can almost taste what I ate for dinner.
So, for tonight, I will close with some photos from our culinary journey that has violated every nutritional guideline known to mankind.
Can you imagine being born in the year 1923 – where your home had no electricity or indoor plumbing – and living until 2009? I believe no other generation of human beings has lived through so much progress and change as my Grandmother’s generation. My mind marvels to think of her life with horse and buggies and Model A automobiles transitioning in 86 years to a world filled with every minute airline travel, space stations, and submarines diving toward the ocean floor.
How do those from that generation comprehend the cell phone, fax machine, Internet and e-mail when many of them lived without even a rotary dial telephone? It must be unbelievable for those who often had to walk for miles to reach a general store to consider the fact that they now can literally stay at home and order anything and everything that they might need with online shopping. What progress! Or is it progress at all?
In the midst of seeming progress, families have become scattered around the world instead of living on the next dirt road. Text messaging and e-mail have eliminated hearing the voice of a loved one in person or on the telephone. Mailboxes sit void of handwritten letters and sentimental cards as computer inboxes fill to capacity. Neighbors don’t visit from their front porches and borrow a cup of flour from each other nearly as much as they did in the early 1900’s.
At our birthday dinner with my Grandma, we discussed all that her life span had enabled her to experience. She commented on something that forced me to pause and to reflect later that evening. She reflected that while her generation might not have been the discoverers of this technology, their hard work helped form the foundation for these advancements. Had they not pushed and shoved their ways through the Great Depression, what would have happened to our nation? What if brave men and women would not have fought to defend our country through numerous wars, what would have happened to our nation? Truly, their generation’s contributions were as beneficial to our nation as those technological advances that my children’s generation will contribute to mankind. Happy 86th Birthday, Grandma.
Saturday, August 15, 2009
Insurance has moved quickly and has already approved four additional weeks of the Rituxan treatment for me, if I decide on Monday (after the OSU consultation) that this is the route I am going to follow. If I decide to continue treatment, in an effort to further knock back the leukemic tumor load, it will most likely begin next Wednesday and Thursday.
My "13th Cancer-Versary and Coming Off Party" is scheduled for next Saturday - if I return to treatment, I suppose we should change the party's title to the "13th Cancer-Versary and Return to Rituxan Party".
Thursday, August 13, 2009
We are grateful to serve a loving, forgiving, healing God. Living in this world, where families are struggling, would be so much more difficult without Your presence and power in our lives. We have all had “fair-weathered” family and friends – those who abandon or desert us during our darkest days. Praise God that You, Lord, will never desert us. Hold onto our hands tightly, Lord, as we make our ways through this journey called life.
Forgive us our trespasses and remind us to always forgive those who trespass against us. For those who have deserted us, hurt us, gossiped about us, or hurt us in any other ways; we forgive them today and everyday. Storing unforgiveness in our hearts, minds and souls will only harm us and separate us from His very near presence, peace, and answers to prayers.
With our hearts and hands pure and cleansed, we approach Your throne with the requests that are most important to us, Precious Father. May we each search our hearts today and lay these vital requests before You.
We ask that You will preserve Larry’s life as he will receive 5-7 bypasses in his upcoming open heart surgery. Place the perfect personnel to perform this surgery. Encompass his family with Your perfect peace.
Our needs are numerous, yet nothing is too difficult for You, Precious Lord.
In Jesus’ Name, we pray and praise. AMEN.
Wednesday, August 12, 2009
If tempted to throw in the towel and surrender to Satan’s tactics to discourage, dispirit, or dishearten, pause to reflect on instances when God intervened at the darkest moment to rescue His children – Noah and his family delivered from the flood; the Red Sea parted as the Egyptians’ chariots bore down on the Children of God; those raised from the dead before they were buried; and Jonah’s rescue from the sea’s depths.
While we may begin losing hope and giving up is being etched on our consciences, remember that God is an on-time God. His timing for delivering His Children from our troubles is perfect. And if we question WHY we are enduring a trial, reflect on Ephesians 3:13: “Therefore I ask that you do not lose heart at my tribulations for you, which is your glory.”
And if tempted to believe that our prayers are not being heard or answered during lengthy tests, we must ask ourselves if we ever had a professor or teacher who spoke to us all through an important test? Probably not. So don’t be shocked when our Heavenly Instructor remains quiet as he watches us wrestle with our problems. He is observing us to see if we turn to Him in prayer, seek guidance in His Word or if we fail the test by giving up in bitterness and frustration.
We must not become discouraged when we are pressed from problems from every life aspect. LOOK UP. We must not permit the pressures of today to rob us of tomorrow’s victories. LOOK UP. We cannot allow others with negative attitudes drag our attitudes to a level lower than theirs’. LOOK UP AND DON'T GIVE UP!
Then He spoke a parable to them, that men always ought to pray and not lose heart.
2 Corinthians 4:1
Therefore, since we have this ministry, as we have received mercy, we do not lose heart.
2 Corinthians 4:16
Therefore we do not lose heart. Even though our outward man is perishing, yet the inward man is being renewed day by day.
Tuesday, August 11, 2009
The praise - my WBC continued to decline to 15,300 - that means my ALC decreased by another 3000 (approximately). I am still slightly neutropenic, so I will not know until the morning if the local oncologist wants me to take more Neupogen. My platelets decreased but hemoglobin was up to 11.3 (not normal, but improved).
From the infectious disease doctor -
When I walked in he said, "Wow, I can't believe how well you look and that your family doctor didn't have to call me one time during Rituxan!" He was impressed with this mini-miracle during treatment.
He is a Christian and he told me that he is very concerned about the H1N1 flu pandemic - he said he feels, based on his research, that it is going to be very, very serious. I asked him what that means for me and he said, "Stacie, this could kill you." YIKES - that's being blunt.
He said he recommends for leukemia patients, including me, to be immunized with both the flu and pneumonia vaccine (although I haven't been vaccinated in years due to the anticipated poor response by my immune system). He said for us to time the immunizations so that they are given right before an IVIG dose - not to take them post-IVIG. He also said all of those who will be around me must be immunized this year.
I am taking Cipro (500 mg twice daily) as my prophylactic antibiotic during Rituxan treatment - he does not want me to discontinue Cipro until AFTER the flu season next spring. Cipro makes me really ill, so I hated to hear this, but I appreciate his concern and diligence to protect me from H1N1 induced bacterial pneumonia.
He does not want me to discontinue the prophylactic antifungal Posaconazole or antiviral Acyclovir. I am concerned the Posaconazole is what is causing the continued neutropenia and anemia - so discussion has begun with Ohio State University about a possible bone marrow biopsy on Monday - please say it "ain't" so -you might recall the grief and extreme pain I had with my last bone marrow biopsy at the NIH in May? But a bone marrow biopsy is the only means to determine if the medicines are causing these counts not to recover or if my marrow is too infiltrated from the leukemia and thus, is not producing the blood cells I vitally need.
That's another story - we will be at Ohio State on Sunday and Monday to see my leukemia specialist. Does anyone pay Frequent Driver Miles to Cancer Facilities? :-) I would have enough earned for a great trip to Hawaii after all of our medical related travel this year. Please pray for our safe travel.
I returned home late this evening and had e-mails from two of my NIH doctors. Since I have responded to the half-dose Rituxan and responded without infection, complication, or reaction, they are recommending that I go back to four more additional weeks of Rituxan treatment. Since my tumor load was so high, they believe it might be of value to me to hit/slap/pummel/wallop the leukemia with some more treatment. How is that for visualization?
And I only thought treatment was DONE, FINISHED, CONCLUDED, TERMINATED ......... life with leukemia is never dull or without surprise.
Insurance approval (the "gods" who dictate care - not doctors) will have to be granted, so I believe I have time to travel to see my oncologist at Ohio State on Monday, possibly have the bone marrow biopsy and make this decision to proceed or not to proceed with four additional weeks of treatment before early next week. Please pray for me to make the CORRECT decision, following the course that GOD would choose for me.
As I've written before, cancer is not for wimps. Please continue praying.......
Monday, August 10, 2009
Last week, on my final day of treatment, my parents visited me at the cancer center and surprised me with a WAY TO GO balloon, card, and cake. The room brightened with the colorful surprises and their presence. THANKS DAD AND MOM!
In the photograph above, the celebratory balloon floats in front of the IV treatment - a visual reminder of the sobering and celebratory moments of cancer that often coincide and collide.
Sunday, August 9, 2009
Last night, Lil Man and his parents visited us. It was dark outside when they arrived. His parents had opened the car doors, so the interior light was on in the car and I could see his face. When I stepped out on the porch and Lil Man saw his Grammy, his face beamed with the broadest smile – he recognized me, he was happy to see me, and in one brief moment, my heart exploded with pride and joy.
I reflect on Lil Man’s early days and weeks. He nestled in the crook of my arm, content to be fed and changed and loved. Eventually a toothless smile emerged and a random coo. He disliked being rolled onto his stomach as he was encouraged to “turtle” and lift us his head. Eventually, Lil Man sat up and his family’s proud hearts swelled. Mommy and Daddy beamed with pride. Grampies and Grammies grinned as grandparents do so well. Aunties and Uncles were unanimous in their praises of Lil Man. We all asked unanimously, “Was there ever a baby so cute and intelligent?”
We laugh because Lil Man’s Mama teaches him “tricks” – and does he ever possess a repertoire of “tricks” for an eleven month old circus performer. Not to sound like a boastful Grammy, I would like to share with you a list of Lil Man’s accomplishments: sitting, standing, walking, running, squatting, knows his ears, answers his phone when anyone says, “Hello”, waves bye-bye, feeds the dog-dog Cheerios, does the raspberries on command, plays peek-a-boo, says Mama, Dada, plays Grampy’s mandolin and the piano on his own, oh how my list could go on and on.
In just one month’s time, our family will gather to celebrate a very important day. The first birthday of Lil Man. He has touched and changed and enlightened each one of our lives. For me, his life has impacted my life in ways I never imagined. His tiny life has breathed life into my broken body. Words such as cancer and treatment and pain are erased with a swipe of his tiny fingers touching mine. One day, I pray, Lil Man will return to the pages of his Grammy’s blog and he will know with uncertainty the depth of my love, my prayers, and my affection for him.
Happy Eleven Month Birthday Lil Man! We love you so much.
D are to Dream
K indness from Others
N ever Give Up
T ime consuming
U nwavering in Faith
Z eal for Life
Thursday, August 6, 2009
As of today, I did not achieve a remission according to the definitions pioneered and authored by the experts. I knew at the onset of treatment, that a complete, molecular remission would be a miracle indeed. Rituxan does continue to work for a couple of months after the final infusion, so reevaluation will be better suited in October. My total white blood count was 18,000 today – a decline from 167,800 at treatment’s beginning. This count was taken prior to the two infusions this week. I would really like to see at least my white count return to normal in the next few weeks.
My case will be labeled a “Partial Remission” if all of my current counts, node, liver and spleen size remain unchanged in two months. Always the perfectionist, I don’t like to do anything “partially” well. Consider these scenarios. Washing the dishes until they are PARTIALLY clean. Constructing a building so that it will be PARTIALLY safe. Traveling by air with a pilot who is PARTIALLY trained. Doing anything “partially” does not appeal to me.
Nevertheless, I conclude this treatment with a heart of grateful reflection. I am grateful that I did not have one infection during these eight weeks. Grateful that I have not had one reaction or complication with this treatment – never in my 13 years of leukemia have I been able to state this with any other treatment protocol. The Message’s translation of Psalm 63:5 states: “It's time to shout praises! If I'm sleepless at midnight, I spend the hours in grateful reflection. Because you've always stood up for me, I'm free to run and play. I hold on to you for dear life, and you hold me steady as a post.”
I've learned not to allow my hope or attention to dwell on "remission" but on living each day fully, expecting a tomorrow, and being grateful for my yesterdays. My life sentence on earth will not be terminated until God has the ultimate say and calls me Home.
You are God alone! No one and nothing can take Your place in our lives. You are omnipotent and omnipresent. You are with us always – walking nearer to us than any human being. You are faithful and never fail us (although we fail you often). You are our everything.
In the book of Daniel we are reminded that “To the Lord our God belong mercy and forgiveness, though we have rebelled against Him.” We are grateful, Father, that in the midst of our times of rebellion or sin, that You are just a prayer away, waiting to forgive when we are truly repentant. We cannot save ourselves or purify our own hearts; it is only by Your mercy and forgiveness, granted to us by the sacrifice that Jesus Christ made on the cross, that we are granted salvation and the forgiveness of sins.
We beseech You, Father, on behalf of the those who are in need of a touch from you. Today, I specifically remember Allison, the four year old granddaughter of dear friends who is having a biopsy for a mass behind her eye. Father, guide the hands of every surgeon and health care provider who will care for her. Uphold this family as they endure these difficult days.
I also ask a special touch on Larry's body - we thank You for revealing these blockages in his body and are trusting and believing that You - the Ultimate Physician is going to orchestrate his surgery. I ask that as he prepares for this open heart surgery, that he and Sally sense Your presence and strength. Impart the wisdom and knowledge to all medical professionals who will care for Larry. Let his recovery be complete and miraculous.
For Pastor Ramsey, the young inner-city Detroit minister, who was stabbed over 30 times, restore life to his damaged body. Allow him to recover completely. Protect and care for his family and him as they return to this dangerous neighborhood when he recovers.
Our world and life situations appear complicated and trying. Yet, all things are possible for those who believe. We will continue to trust and believe that You are in control of the most impossible situations. Continue to bless and use each of our lives to reach the unsaved who dwell in our presence.
In Jesus’ Precious Name I pray. AMEN AND AMEN.
Wednesday, August 5, 2009
Dialing her number, I knew a vital portion of my destiny was hanging in the balance - waiting on the donor search results to determine if there was a perfect match for my transplant - a genetic twin, more like me than my own flesh and blood. As I stated above, cancer is not for wimps. Her phone rang and my heart raced. A portion of my heart wanted my call to be directed to voice mail. Then the voice of Jennifer - the NIH Transplant Coordinator, who had been managing my donor search, was on the line.
As with all life-altering decisions I have been faced with during this cancer journey, I have been praying and asking God for His clear guidance on this transplant decision. A stem cell transplant is one of the procedures where the experts take the human body nearest to the point of no return and then try to salvage your life. My own immune system would be virtually annihilated by chemotherapies (I believe this trial is using seven - yes seven - different toxic agents) to accomplish this task. Then the donor stem cells would be infused into my body and we would pray that before an infection killed me (with no immune system to defend me) that the donor's stem cells would engraft. In addition, serious, life-threatening complications with Graft Versus Host Disease are of the utmost concern. This is where the donor's cells would view my body as an invader and could turn on my own body and attack it. Some people with serious Graft Versus Host Disease have actually committed suicide due to the unrelenting pain and suffering it can cause.
Jennifer was straightforward and within minutes of making contact with her, I was told that I DO NOT have a 10/10 match - AT BEST they anticipate a 9/10 match. The donor search team will discontinue further search activity until/if I make a more dedicated commitment to transplant. I was thankful to know this as I didn't want my potential donors to be contacted too soon and have to ponder how their own lives would be changed by agreeing to attempt to save my life. I could not be told any great detail about these potential donors who could generate a 9/10 match for me. I was told part of them live in the USA and part of them live outside of the USA.
If I was already assuming a possible mortality rate of 40 percent from undergoing the transplant with a perfect 10/10 match, those odds would further decline by approximately 9 percent for each non-match (9/10). Graft Versus Host Disease threatens approximately 40-50 percent of the transplant participants with 10/10 matches and that figure would increase to approximately 60 percent for a 9/10 transplant.
I am processing this information (in the presence of benadryl and Rituxan infusing) and I am not certain how I feel about it at this moment - I had prayed for the transplant door to be closed if there was no perfect match - and that appears to be happening - at least for this time and season. Obviously, with each month, new potential donors are added to the registry and thus, a perfect donor could yet emerge. I knew that a very perfect match would still result in my facing a very serious procedure with a very high chance that I would not survive it. Without a perfect match, considering a transplant seems more daunting and threatening.
It is now very sobering to realize my one "secret weapon" (transplant with a perfect match) that I always pondered keeping in my back pocket to pull out when death was banging loudly on my life, no longer exists. Although it previously only dwelled in my heart and mind, there was a degree of security in just believeing there was a perfect match for me.
My life is in His hands.
Tuesday, August 4, 2009
Tomorrow, I return for Week Eight of my treatment - for those of you who have been following this journey, you will realize that I have reached the final week of treatment. Thank you for your support and prayers during this summer - please continue praying. God is listening, as He always does to the prayers of His children. I will also receive treatment all day on Thursday.
I missed a call today from the National Cancer Institute in DC. The message was from one of the transplant coordinators and I believe she is the one who calls with the official donor search results. It will be a long night, pondering what my return call to her might disclose. I am debating if I want to call tomorrow while under the influence of many drugs and a while bit delusional. However, if I wait to complete treatment before calling the transplant coordinator, it will be a two day wait and that might be more than my curiosity can cope with regarding such an important, life-altering piece of information.