Two years ago today, our son-in-law received his kidney transplant. He has done miraculously well with no signs of rejection. Today, I reflect on the gracious gift of a kidney, that a family of a young woman killed in an accident, donated to our son-in-law. That selfless decision radically changed the lives of our daughter and son-in-law. Gone were their days filled with dialysis, dialysis supplies, and feeling poorly everyday. God has breathed new life into Philip.
Today, I ask my readers to consider organ, marrow or blood donation. Our family has benefited from Philip's organ donation and blood donations by the thousands have been utilized to benefit my health. Other cancer patients and myself search marrow and stem cell registries, with hopes that a perfect match for a transplant can be located.
Unfortunately for me, the perfect match for a transplant has not been located. This was my one last resort at a normal life span according to my NIH specialists. And no matched donor was available. With each person who joins the National Marrow Donor Program registry, I (and many others) receive one more chance of finding that matched donor. Go to: www.marrow.org for additional information.
My son-in-law sent this to me. Although H1N1 (Swine Flu) poses great risks, this attempt at bringing humor to the virus provided me with a belly laugh (good for the immune system)! I do not know to whom the credit for this creative photograph belongs.
When my Inbox begins filling with e-mails from family and friends who are checking to see (1) if I am in the hospital; or (2) if I have died, I realize it has been too long since posting an update. Thank you for your concern and prayers and reminders to update my Blog!
This makes me think about one of my good friends. If she calls our home telephone and no one answers, she calls my cell phone. And if she calls my cell phone and no one answers, she calls the hospital to see if I am there. I kid you not about this. She will finally reach me and tell me that she had checked at the hospital and I was or wasn't there. Then I say, "O, ye of little faith!" (You know who you are, Shelly!)
I completed the 21 day cycle of the IV antifungal on Thursday. My veins truly needed a break. my forearms from wrists to elbows are badly bruised and need time to recover. However, now we are playing the waiting game - the Identification and Sensitivities from the two positive lung fungal cultures still have not arrived from Texas. Without this vital information, I am in a holding pattern. Until we have these results, we will not know if the recent 21 day cycle of IV's was effective against these fungal menaces and we will not know until we have these answers if additional treatment is going to be required.
Unfortunately, my spleen, liver and lymph nodes have begun enlarging once again. My WBC is increasing and my Beta-2 Microglobulin level (which can be an indicator of the tumor load in my body) increased by 50 percent since June. These are disturbing signs and symptoms to report. I am attempting to determine if all or any of these apparent indicators of the leukemia progressing again could be attributed to underlying fungal infections. I do not know which would be the lesser of two evils.
I continue to have twice weekly blood draws as I teeter near neutropenia most of the time. I anticipate that I will require a Neupogen injection again this week.
I would like to be able to run and escape from leukemia for a year or a month or at this point, even a week or a day. Today that dream seems impossible, however, I must continue to trust God. My strength is gone, evaporated, zapped - so I will cry out for His strength, once again.
Don't take your good health for granted today. Treasure it. Guard it. Thank God each and everyday for your good health. Good health is worth far more than any worldly riches you will ever possess. You will not realize this until good health is gone.
Today I have visited the sweltering tropics and the frigid Arctic. And I did this all from the infusion chair at the cancer center! I arrived before eight today - knowing a very full day awaited me with the IV antifungal and my regularly scheduled (every 28 days) IVIG treatment for my immune system both scheduled for today.
The IV antifungal makes me chill and grow colder and colder with each drop of medication that infuses. The drug representatives "generously" gift the oncologists with blankets embellished with the names of the expensive cancer drugs they sell. The standard Tennessee-orange Rituxan blanket has become my standard wrap of choice through these three weeks of daily cold-inducing IV Micafungin. If all goes well and as planned - pray, cross your fingers, knock on wood, cross your eyes whatever you choose to do - then tomorrow will be my LAST IV until next month. I have been coming twice weekly and then daily for IV's of some sort since June, so this escape from IV infusions will be embraced with all of my being. And my veins shout in agreement, "AMEN!"
After completing today's IV Micafungin, wrapped in my orange blanket and shivering away, the second treatment was started. Within fifteen minutes or so, I became sweaty and so warm I thought for a moment I had been transported to the tropics. All of these medications make for a very groggy, confused brain. The Rituxan blanket was tossed on the chair, my hair was pulled up in a hair twist, and all remnants of the shakes and shivers evaporated.
We still do not have the Identifications or Sensitivities for the two positive lung fungal cultures - perhaps Friday will reveal the much awaited information. Hopefully, these results will validate that the fungal infections responded to the treatment I have been receiving.
I will have to continue on the Amphotericin (Ampho-Terrible) intranasal irrigations for 3-4 additional weeks, according to my Infectious Disease doctor who called me yesterday.
The second urine culture again showed drug resistant e.coli. However, the benchmark of 100,000 organisms is usually used to initiate treatment for urinary tract infections and my reports are showing in the 60,000 range for the e.coli organisms. Please pray that this does not grow into a full fledged infection.
My platelets are back to 80,000 - with that decline returns my "Stage IV" designation. I am hopeful that all of the medications are causing this decline and that once they are completed, the platelet count will recover and I will be restaged to my "Stage II" leukemia level that I had achieved with this summer's Rituxan treatment. Kind of pitiful for someone to be excited about a Stage II cancer diagnosis! But it beats Stage IV all to pieces.
"Season of mists and mellow fruitfulness, Close bosom-friend of the maturing sun, Conspiring with him how to load and bless With fruit the vines that round the thatch-eaves run; To bend with apples the mossed cottage-trees, And fill all fruit with ripeness to the core; To swell the gourd, and plump the hazel shells With a sweet kernel; to set the budding more, And still more, later flowers for the bees, Until they think warm days will never cease, For Summer has o'er-brimmed their clammy cell."
I have been reading and meditating on the book of Romans. I encountered this passage today and realized what a terrific set of guidelines it is for God's people. Imagine if the world's people would take these instructions to heart and obey them - what a difference we would witness in our day to day lives. Please take a minute to review these points of advice to see what areas demand improvement in your own lives. I plan to do the same.
--Let love be without hypocrisy --Abhor what is evil --Cling to what is good --Be kindly affectionate to one another --Rejoice in hope --Be patient in tribulation --Continue steadfastly in prayer --Distribute to the needs of the saints, given to hospitality --Bless those who persecute you --Rejoice with those who rejoice, and weep with those who weep --Be of the same mind toward one another --Do not set your mind on high things, but associate with the humble --Do not be wise in your own opinion --Repay no one evil for evil --If it is possible, as much as depends on you, live peaceably with all men --Do not be overcome by evil, but overcome evil with good
At times when God seems very far from us, it is always helpful to me to focus on His creations that surround me. As I caress the baby hand of my grandson, God's creation breathes before me. As I sit at the ocean's edge and feel the mist of the tide, ebbing and flowing before me, God's power and unending presence overwhelm me. As I open my eyes and witness a morning sunshine, strokes of oranges and pinks painting the eastern horizon, God's reliability and consistency come into focus. As the majesty of the mountains surround me, I am aware of God's power and might. As the uncountable numbers of plants, insects, animals, and birds live and breathe around me, I am awe struck at God's creativeness.
The song "Creation Calls" by Brian Doerksen contains mindful lyrics that portray the wonder and amazement of God's creations. If nothing else persuades you that there is a God who created this universe in which we live, may you be persuaded by the breath-taking video that follows these lyrics. I believe.
"Creation Calls" Brian Doerksen
I have felt the wind blow, Whispering your name I have seen your tears fall, When I watch the rain.
How could I say there is no God? When all around creation calls! A singing bird, a mighty tree, The vast expanse of open sea
Gazing at a bird in flight, Soaring through the air. Lying down beneath the stars, I feel your presence there. I love to stand at ocean shore And feel the thundering breakers roar, To walk through golden fields of grain With endless bloom horizons fray. Listening to a river run, Watering the Earth. Fragrance of a rose in bloom, A newborns cry at birth.
I love to stand at ocean shore And feel the thundering breakers roar, To walk through golden fields of grain With endless bloom horizons fray
I believe I believe I believe (Interlude) I believe I believe I believe just like a child (Choir I believe..) I believe
To view a beautiful video of God's creations put to the song "Creation Calls" go to:
The H1N1 (Swine flu) virus continues to occupy headlines and news casts. Some have stated that they are not overly concerned about this threat. Every one of my specialists has expressed dire concern over the potential tragedy that might emerge from this year’s flu season. I write this post to inform my readers and to help those around me to protect me (and them) from this looming threat.
I will not receive the seasonal flu vaccine or the H1N1 (swine) flu vaccine. To take these vaccines with an immune system as poorly functioning as mine, will not benefit me. It would be like tossing the vaccines in the trash can. It is horrifyingly frightening to face the upcoming flu season with a compromised immune system AND the inability to be protected by the vaccines. For those of us at high risk during this flu season, there is vital information we all must read and act upon.
The recommendations that I am receiving and reading are to receive the standard seasonal flu vaccine earlier this year than in the past. My doctors are recommending that my family (and all others where the seasonal flu vaccine is recommended) receive the seasonal flu vaccine before late September. Pneumonia vaccines will be important, given that the H1N1 flu virus often kills with a bacterial pneumonia.
The NEW H1N1 (swine) flu vaccine will be released shortly. From what I have researched, the first round to be distributed of H1N1 vaccines will be the nasal spray vaccine (Flu Mist) – WHICH IS A LIVE VACCINE. Why is this important? People who are immune compromised or others at risk CANNOT, SHOULD NOT, BETTER NOT take this live, nasal spray vaccine. I could potentially contract the H1N1 virus by standing by someone who has just taken this LIVE vaccine. That is frightening to me. I can alert family and friends NOT to take the LIVE vaccine. However, I will have no way of knowing if the nurse caring for me or the person in line at the grocery store with me has received the LIVE vaccine. My research has revealed that this inhalable version will be available the first week of October. It is expected that the other three injectable versions will be available in late October. News sources had been reporting that those receiving the H1N1 vaccine would require two injections, however, it is now being touted that ONE H1N1 injection and ONE seasonal flu vaccine is the best recommendation.
When I originally planned to write this blog, I was going to beg, plead, and encourage those around me to receive both injections. In good consciousness, I do not feel that I can ask everyone to take the H1N1 vaccine since it has had limited research time dedicated to this product. That makes me a bit nervous. But then again, the H1N1 virus makes me extremely nervous. This will have to be a personal decision that each person makes. Educate yourselves. Review the data for the demographics in which you fall (age, health concerns, profession, etc.) and weigh the benefits against potential risks.
All of my doctors recommend that everyone who spends time with me or in our home receive the immunizations. This is referred to as “herd immunity”. Immunize the “herd” (sorry family and friends for this reference to you as the “herd”) to protect me. The logic is if all of my family and friends stay healthy, I will have a higher potential to remain well. Again, this is going to have to be a very personal decision for each of my loved ones. However, do not be offended, when I may not be able to be around crowds or groups of loved ones. The most frightening part of H1N1 to me is the fact that for 24 hours prior to ANY symptom, you will be contagious. A well-meaning family member or friend, feeling perfectly well, could visit me and infect me and note develop the first H1M1 symptom until it is too late.
We are beginning to formulate a plan of protection for me. Many of these tips will help to protect each of you and those you most love from contracting this threatening virus:
1. Be aware of the flu outbreak levels in your state. Each Friday, I check the CDC’s flu map that shows the level of outbreaks in each state. Once these levels reach REGIONAL or WIDESPREAD, I retreat to staying at home. To check that website, visit: http://www.cdc.gov/h1n1flu/updates/us/ .This is updated each week. Normally these REGIONAL and WIDESPREAD outbreaks occur in December and last through March – times I spend most of my days at home. This year, over twenty states are already in the WIDESPREAD level of outbreaks. It is predicted that this outbreak of H1N1 could be peaking by mid-October. Be prepared and be prepared early.
2. Learn to live like I do everyday. Purell your hands after you touch anything in public including others' hands, grocery carts, menus, salt and pepper shakers, buffet utensils, door knobs, elevator buttons. Use your shirt tail or jacket to push buttons, open doors, or when touching other “public” areas. It is much easier to PREVENT the H1N1 virus rather than to TREAT it.
3. Wash your hands frequently. Cough and sneeze into your elbow – not into your hands where you will spread the germs.
4. Know the H1N1 symptoms like the back of your hand. This year it is too risky to ignore a symptom as a “cold” or “allergies” or other excuses that you have used in the past. The key to surviving the H1N1 virus is early recognition of the symptoms. Tamiflu, an antiviral medication, has been successful in almost all cases of H1N1. HOWEVER, IT MUST BE TAKEN AT THE FIRST SIGNS OF THE FLU. This is a prescription medication. We all may be making a few extra trips to the doctor this year for a flu test to determine if we actually have H1N1 and to obtain Tamiflu. DON’T DELAY. There is a second antiviral with some effect against H1N1 – Relenza. If you require an antiviral, discuss your options with your physician. I cannot take Relenza because of having asthma and it is an inhaled drug.
5. The symptoms we cannot ignore according to the CDC are: “The symptoms of 2009 H1N1 flu virus in people include fever, cough, sore throat, runny or stuffy nose, body aches, headache, chills and fatigue. A significant number of people who have been infected with this virus also have reported diarrhea and vomiting. Severe illnesses and death has occurred as a result of illness associated with this virus.”
7. If you or your family is exposed to the H1N1 it is vital that you tell me immediately and do not come around me. Be alert, vigilant and diligent to listen for word that anyone around you has been exposed to H1N1 or who has developed the virus.
8. If you develop any of the symptoms on the above list, STAY HOME. I am not the only immune compromised person in the community. Going to church, work, or other public spaces with these symptoms is unfair to those around you.
9. If you are young, strong, or healthy, don’t be overly confident that this virus will not be a threat to you. Data from the deadly 1918 flu pandemic’s statistics reveal that many 20-30 year olds (young and healthy) were killed by the flu.
I am not a physician. Each person needs to formulate an anti-flu plan this year for his or her family. Discuss this information with your physicians. I do ask each of you who might come into contact with me, to take this threat very seriously and do all that you can to protect me. My body cannot defend me. Immunizations cannot defend me. I must rely upon God’s protection and the diligence of my family and friends to keep me protected and flu-free this year.
We are gracious for the beauty You have placed in our lives. To witness beauty in butterflies, the oceans, the azure blue skies, the golden rods and daisies – we are grateful for our eyes that can witness such beauty. And for those who may not have physical vision, but who have spiritual eyes to see, I am certain they are rejoicing at the warmth of Your presence in their lives. May You enlighten those who struggle with vision difficulties and allow their minds and spirits to envision and sense the beauty around them.
I am grateful that You are not willing that any shall perish – falling short of achieving eternal life. An eternity spent in the depths of hell is beyond my comprehension and I pray that none whom I love will enter the gates of Hell. You are a patient God who will wait on the lost son or daughter to turn to You (or return to You). Forgive us when we fail You or try Your patience, Father. May our lives reflect You, Lord.
Give each of us the heart of an intercessor. Holy Spirit, prompt us to pray for one another. Comfort each one who is suffering. Encourage each heart that is broken. Restore each family that is struggling. Deliver each life being attacked by the enemy of this world. Change each heart that attempts to stray from You. May we always believe You and Your Word.
So that my faithful readers of my blog will not think that I have "checked out", I thought I should update my blog. I have continued to receive the IV antifungals everyday and have completed 15 IV's. I have completed Day 7 out of 10 of the Neupogen injections for my immune system. And I continue with the twice daily antifungal Amphotericin being inserted intranasally (wow, does this hurt!).
My platelets and hemoglobin are holding stable which was a concern since the IV antifungal can decrease both of these. I am thankful about this. My liver enzymes had elevated earlier in the week (toxic overload on my poor liver from all of these drugs). However, I doubled my alpha lipoic acid and the enzymes were back in normal range today. My family physician, who oversees my naturopathic approaches, encourages me to use the alpha lipoic acid to protect my liver from the dangers of these drugs.
The bacteria in the urine is drug resistant, so I am to submit another sample for testing to see if we should proceed with yet another drug.
We still have not received the identifications or sensitivities from the two lung cultures. It appears to me that modern medicine could uncover a better way to expedite this type of vital testing.
The skin biopsy reports returned today and I had a late afternoon call from the dermatologist. I did not have a pen to write down what the biopsy stated, so I will have to obtain the specifics from my family doctor who will receive a report. I know the dermatologist said the lesions were not bacterial or fungal in nature. And they were not cancerous. So, I will have to read the report before I can better report on the specifics of the lesions.
I just do not feel well overall and it is difficult to discern if the sense of malaise and not feeling well is from the infections, the leukemia, all of these medications, or a combination of these factors. We have not even been able to evaluate the status of the leukemia (post treatment from this summer) due to all of the side effects of the current medications. Once the infections are resolved, then we can pause to evaluate if a partial remission was achieved and is being maintained or if the leukemia is on the march again.
Thank you for your prayers. I need strength and a newly breathed will to fight this dreaded battle.
“One of the greatest tragedies of our modern civilization is that you and I can live a trivial life and get away with it. One of the great advantages of pain and suffering is that it forces us to break through our superficial crusts to discover life on a deeper and more meaningful level."
Thank you for all of your prayers, cards, and kind e-mails. I am resting on the sofa - orders from husband! After Friday's challenging day, I returned for my IV antifungal and the Neupogen injection on Saturday morning. Then we traveled to Lil Man's first birthday party. As poorly as I felt, I probably would not have gotten out of bed for any other reason! I was blessed that I could celebrate one year of life that I have shared with Lil Man.
I returned early this morning for my IV and injection and we returned home by 10 AM. My husband had a difficult time even waking me up this morning. All of this summer's treatments, the infections, medications, etc. have taken a toll on my body. Thus, my orders to rest all day today. Usually I will argue such orders, but today, my body embraces the rest.
I have now completed Day 10 of the IV's (the plan is for 21-28 days). And this was Day 3 of ten days of Neupogen. The new antifungal Amphotericin (or Ampho-TERRIBLE) is very painful to irrigate into the sinus cavities. It feels like fire moving through the various sinus cavities. I pray it will work and help to reverse this long cycle of fungal infections.
I did not have labs drawn over the weekend, so nothing new to report from that area. Please continue to pray for resolution of the fungal infections; for my liver and kidneys to be protected from so many harmful drugs; and for the leukemia to continue to be addressed (Rituxan can continue to work for a month or so after the last treatment, which I received 11 days ago).
I am exhausted tonight. My day began at 7:45 when my parents picked me up to take me to the cancer center. I received the IV antifungal and the Neupogen injection.
Last night I had discovered five or six blistery eruptions on my chest and abdomen. At first, I suspected shingles, which are common in immune compromised patients (I have had three bouts with shingles). I asked the oncologist if he thought it was shingles and he did not.
Before I completed the IV antifungal, my family physician called me. Given that I have a second positive fungal infection on culture, she recommended that we begin therapy with Amphotericin B. This drug is known among patients and doctors as Ampho-TERRIBLE. It is a drug with numerous risks. My always-thinking family physician recalled a Mayo Clinic article where Amphotericin B was mixed and inserted directly into the sinus cavities versus daily IV's. We agreed that I would try this. She suspects that a fungal infection in my sinuses is "seeding" the fungal infections in my lungs. She is hopeful if we use Amphotericin B in the sinuses that we will see improvements in both locations. I am at the end of the road of antifungal medications - Amphotericin is the big, bad final option for fungal infections. I am desperate for this drug to work.
My doctor also recommended that I go for a CT Scan of my sinuses. I left the cancer center and went to the diagnostic imaging center. The CT confirmed some sort of infection in my maxillary sinuses on both sides.
After consulting with one of my trusted leukemia specialists, I decided that the skin lesions necessitated a visit to the dermatologist. There are a couple of skin reactions associated with Rituxan that often times are fatal. After begging and pleading with the dermatologist's nurse, they agreed to work me in late today. My Dad took me to the dermatologist and I ended up having to have a biopsy with stitches. She did not believe it is Stevens Johnson Syndrome (the dangerous Rituxan-related skin complication), so that was a major praise. It was not shingles. Another praise! However, until we receive the biopsy reports next week, we do not have a final answer regarding the skin lesions. It is possible it is another fungal infection or a list of other possibilities. The biopsy site is very painful tonight.
We left the dermatologist's office and Dad took me to meet my husband. He had gone to the hospital and purchased the Amphotericin B solution that the pharmacists had compounded. It looked like a two liter bottle of Mountain Dew. The doctor did not want me to take this medication at home so we took the first dose at the hospital and had to wait two hours. Thurs far, I have not noticed anything different except for the palms of my hands are itching. I will be taking this medication for at least three weeks. We returned home after 8 tonight.
I am run down, exhausted, concerned, disheartened, discouraged, and very sick and tired of being sick and tired. I truly need to witness some healing of these numerous problems in my body. I feel as though I am unraveling at the seams. I have so many physicians attempting to "fix" so many problems that just the organization and coordination of all of the doctors, medications, treatments, tests, etc. is an overwhelming task that I almost cannot manage anymore.
I am thankful to know that so many of you are praying for me. That is very comforting.
I'm counting on this:
Matthew 19:26 But Jesus looked at them and said to them, “With men this is impossible, but with God all things are possible.”
You are high above any source of comfort that we can seek. I praise You for the constant companionship of the Holy Spirit. I am grateful for Your unending love for each man, woman, and child. I sing Your praises through good times and bad times, because You remain forever unchanging, Lord.
My heart is burdened for those who do not know You as their Lord and Savior. Lost souls surround each one of us. Father, forgive us if we are not sharing Your message of salvation with them. Empower us and give us the courage and opportunities to share the love of Christ with those who do now know You. May our lives always reflect You and if there are areas in our lives that might be a stumbling block for someone coming to Christ, may the Holy Spirit reveal those flaws to us. May we be repentant and obedient to follow Your Words:
“Go therefore and make disciples of all the nations, baptizing them in the name of the Father and of the Son and of the Holy Spirit, teaching them to observe all things that I have commanded you; and lo, I am with you always, even to the end of the age.” Amen. (Matthew 28:19-20).
Father, we believe that we are asking according to Your will when we ask for Your healing touch to rest upon so many. I ask that the Holy Spirit be very near to each of us who is battling a health challenge. Nothing is impossible for You, so we will trust You with our petitions.
I need your prayers once again. A second fungal infection in my lungs has grown out on culture. It has been sent to Texas for identification and to run the sensitivities to see which drugs it will respond. I need an outright miracle from God to stop these dangerous infections in their tracks. I need God to correct the problems as I cannot depend on any one drug right now or my fractured immune system. I need "de-fungied" - I don't believe that is a word, but it accurately describes what I need - a clean sweep of my internal body by the Hand of Almighty God.
Today, I received Day 7 of the first IV antifungal. I had returned home around 11 AM and then heard from my family physician around 1 PM that the second culture was positive. So, I had to return to the oncologist's office. They ran a CBC (still waiting on results). It is imperative that I do not become neutropenic (low infection fighting cells) at this time.
I presented the oncologist with several journal abstracts that documented the value of Neupogen injections (Thanks, Dr. Hamblin!) when fighting severe fungal infections. He agreed with my research and it appears (for now) that insurance is going to approve. My oncologist faxed this research to Anthem. If all goes as planned with Anthem, I will begin ten straight days of Neupogen in the morning. I am already going seven days a week for IV Micafungin, so this will be administered after the Micafungin each day.
Neupogen has several side effects, but always the worst for me is the deep bone pain that it causes. Neupogen stimulates my bone marrow so that it will produce and release bands (baby neutrophils) that will grow up and mature into infection fighting neutrophils. And as that bone marrow is prompted to produce and release these cells, severe, deep bone pain results. OUCH.
If my readers learn nothing else from my blog, I pray that each of you will learn to be an advocate for yourself when medical issues arise. Educate yourselves about the disease you are battling. Be your own best advocate, armed with documented journal articles/abstracts. Never back down when your insurance company says, "NO" to a request that you and your physicians know is in your best interest. And always depend upon God as your Healer, Comforter, and Deliverer.
09-09-09. A special and unique date to celebrate the first birthday of an extremely special and unique baby boy – our grandson! My mind cannot comprehend that an entire year has vanished. It seems only yesterday, that I swaddled this tiny gift from God in my arms and now with his lightning speed toddling around the house, I can barely contain him in my arms.
To hear my husband and I rant and rave and brag about Lil Man, you would be convinced that we are his grandparents. We chat about his intelligence after he returns home in the evenings. We are certain he has walked, talked, kissed, waved, clapped and accomplished everything before any child his age. We converse about how sweet he is and how coordinated he is and then marvel at how he took the karaoke machine’s microphone, “sang” into it and danced at the same time.
I reflect on the first time after he had begun the transition to walking, he bumped his head at our home. We called his Mom at work. We were ready to rush to the doctor. After his Mom assured us he was fine, Grampy and Grammy prayed for him and he calmed right down. God has blessed us with a new person to pray for and to teach him about God’s love for him. We have a children’s Bible songs CD we play in the car everyday while we commute with him. He claps and dances and absorbs those important lyrics everyday. One night last week, my husband started singing one of those catchy tunes and I joined in and we both burst into laughter.
Before Lil Man, I always marveled at how grandparents would boast and brag about their grandchildren. I just did not “get it”. Now I understand completely. Grandchildren enter our lives when we are more mature and stable adults. We partake in the giddiness of grandparenting and then return the little ones home to their parents where discipline, doctor’s appointments, and other drudgeries of parenting belong to them. We try our best to love him beyond measure and to teach him about God’s love for him.
I never dreamed I would live long enough to be a grandmother. I did not even consider that it would be a possibility for me. And then Lil Man entered our lives. Oh, the joy he has given to me in the midst of much suffering.
Sometime ago, our family meandered from Toronto to Niagara Falls through upstate New York and into Pennsylvania Dutch County – Lancaster County to be specific. We were on a mission to locate Betty Groff’s farmhouse restaurant. Groff was discovered by iconic food personality Craig Claiborne. We had heard of her personal attention to guests and her culinary creations, representative of the Pennsylvania Dutch heritage.
After a lengthy drive through the beguiling and charming roadways through Pennsylvania Dutch Country, we happened upon this high-end farmhouse. Indeed, Betty Groff was attending to her guests. We feasted on one of the most memorable meals of my life. The ambiance was warm and welcoming and the cuisine, without spoken words, detailed the legacy of Pennsylvania Dutch Cooking.
Recently, we have been bombarded with advertisements for the new movie, Julie and Julia. Being a blogger on a mission to update, inform, inspire, and entertain my readers, I have undertaken a new-finagled mission – in remembrance of this dining experience, I have my autographed copy of Betty Groff’s cookbook entitled Betty Groff’s Country Goodness Cookbook in hand and in the spirit of Julie and Julia, I am going to begin cooking through Groff’s encyclopedia of Pennsylvania Dutch culinary treasures. I will report on the cooking experiences and share photos of the finished products. I will list the page number for each recipe if you would like to reference the recipe.
Be patient for the first culinary creation – this plan was formatted before the news that 28 additional days of IV therapy awaited me.
Today my labs revealed a continued decrease in my total white blood count and my all important, infection fighting neutrophils. Normally, I am eager to report any decline in my total white count (I have yet to see a normal white count resulting from this summer's treatment). However, in this instance, it is concerning if the IV antifungal wipes out the very cells that help to fight infection.
I anticipate I will need additional Neupogen injections within a couple of days. One side effect of the new IV antifungal is that it can lower my white blood count, red blood count and platelets. This is all a delicate balancing act - trying to treat the serious infection without jeopardizing my blood counts. While the neutrophils dropped over 5000 with 4 treatments, my platelets and red count both improved. So that is a praise!
I've lost much strength over the weekend - I believe the 11 weeks of Rituxan now combined with this infection and having to go 7 days a week for those treatments are catching up with me. God is truly going to have to be my strength, otherwise I will never make another 3 weeks of these treatments everyday.
As I continue through this battle, I am reminded over and over how perfectly God has created the human body. What takes teams of doctors and uncountable medications to achieve in my body, is daily achieved in the healthy human body without any intervention, awesomely orchestrated by its Creator. I often reflect on the all elusive cancer cure and how complex God created the human body that its mysteries and diseases cannot be understood, conquered or cured by the human mind.
My temperature was back up today and my cough did not sound well overnight and this morning. The cough has sounded better this afternoon.
We (my parents and I) left home at 7:30 AM. Received the IV from 8 to 10 (blew out 3 veins). Lil Man met us at the cancer center and we returned home. He was here all day and then I had to drive back to see my family physician at 4:15 and didn't leave there until 6:00 PM. No wonder I am tired!I just need one day at home to sleep.
My family doctor wants a sinus sputum sample to test to see if the fungus is in the sinus cavities, as well as the lungs. She is quite concerned about the flu and said I probably don't have many more days until "house arrest" (quarantined at home due to flu risks and having limited immune function). We are trying to locate a conjugated pneumonia vaccine for me to receive a few days before my next IVIG on the 21st (best timing for vaccine for those of us receiving IVIG). Everyone involved feels this (conjugated pneumonia vaccine) is the most important attempt I can make for protection. Everyone agrees that my immune system is so bad that taking the regular flu or the H1N1 vaccine will be worthless.
Tomorrow is Lil Man's first birthday and we will repeat today's schedule. His party is not until Saturday, so I am blessed with him here on his birthday. I am decorating his high chair tonight to surprise him in the morning when he arrives.
Please continue praying. We truly need to see my normal 97.4-97.6 temperature return and remain at that temperature. It is vital that I not become neutropenic, so please pray that if this count should bottom out, our spirits will be alerted so that Neupogen can be started. And most importantly, please pray that God will use this drug to eradicate the fungal infection.
Once again, I have watched the return of the giant mushroom in our front yard. Their arrival this time has been more poignant. One day, it was but a tiny speck of white in our front yard and three days later it was six inches tall and probably six inches around. This is part of the reason that fungal infections are so dangerous to me - they can grow quickly and spread out of control in an immune compromised host. We need the fungi in my lungs, skin, and anywhere else it might be lurking to be annihilated and eradicated in quick fashion. God is able ......
I received my fourth IV of the antifungal Micafungin today. I continue to chill and I become very cold during each infusion and for twenty minutes or so after it finishes.
The doctor will check my labs tomorrow. These are being closely monitored since Micafungin can decrease white counts, red counts, and platelets. Yesterday, after only three IV's, my white count had declined by almost 50%. My hemoglobin fell by almost an entire point. And my platelets decreased by 20,000. Since most of my counts are in the process of recovering from this summer's treatment, it is important that we quickly detect and address any serious blood count declines. We are most concerned about neutropenia. In the presence of a fungal lung infection, neutropenia can be critical.
My cough was worse overnight and my temperature has been higher today. I continue to have problems with the Micafungin making me sick to my stomach. Please pray that the sensitivities (tests to show what drugs this fungi best responds to) will become available quickly for us. The next drug that will be added is most likely AmBisome (www.drugs.com/ambisome.html). I pray I do not have to make this switch because AmBisome is a very difficult drug to take and will most likely require hospitalization.
The timing was uncanny - the wife of a fellow leukemia warrior notified our support group that he died of lung complications. That touched too close to home and saddened me greatly. Statistics show that over 50% of deaths of patients with this type of leukemia are killed by infections - mainly pulmonary (lung) infections.
I am walking in very deep water and pray that as I "pass through the waters, God will be with me; And through the rivers, they shall not overflow me. When I walk through the fire, I shall not be burned, Nor shall the flame scorch me" Isaiah 43:2.
God is listening to our prayers. I have had a better day today. Over the years, I have watched many fellow leukemia warriors' lives be taken by fungal lung infections. I have had to battle fear from attacking as I fight this fungal lung infection. In a matter of days, a fungi can take over the lungs in an immune compromised patient. Thanks for also praying for me not to be fearful.
I went to bed last night, so ill, and I began searching my Bible for Promises that He has made to me - I made a list before I went to sleep so that I can pray them over and over as I battle this most recent infection.
Tonight my temperature is 98.1! Praise God - it is normally in the 97.4 range, so it remains a bit elevated, yet it is so much better than this week's high 99's. Since I am so immune compromised, my body cannot run a very high fever with infection. That makes it difficult because I can have life-threatening infections with a temperature of 99.
Also, my pulse had been 100-110 since Wednesday and it is down to 80 tonight! My doctor said that if my pulse ox began to decline, that would be a poor prognostic indicator for me, so I am very grateful that it is running in the 98-99% range.
I have taken probiotics and worn my Sea-bands all day and I have not had the nausea and diarrhea of yesterday.
My Ohio State University oncologist wants me to meet with their transplant team's infectious disease specialists, so it looks like we will be making trips to OSU in late September and in October.
We are attempting to coordinate how I can receive IVIG (immune treatment I receive every 28 days) AND IV Micafungin on September 21 - it may not be possible as an outpatient, so I may have to be admitted. Also, the current plan is to give me a pneumonia vaccine four days prior to the IVIG (in preparation for H1N1 season). Doctors do not anticipate the vaccine being effective - it takes an intact immune system to mount a response to vaccines. Yet, we must make an effort as all physicians involved are very concerned if I should contract H1N1. Also, it has to be carefully times as IVIG's antibodies will destroy any vaccine. We will need to administer it when my IgG level is at its lowest point in the 28 day cycle of IVIG.
My IV will be at 8 AM tomorrow. Please pray that I will not have a reaction - today I chilled through the entire infusion and tomorrow we will be infusing it without the protection of steroid premedications. I will go to the hospital when I finish so that I can have labs drawn this holiday weekend.
We were blessed with Lil Man time today. This afternoon after sleeping, I even felt like a trip to a cheese festival. They had shetland pony rides and Lil Man took his first pony ride. We should have purchased a pony and not a Little Tikes swing set/castle for his birthday! I should have thought of that!
I probably should not have gone because I am so exhausted and in pain tonight, however, my heart and spirit feel so much better. It is vital for me to carve out whatever size niche of time to do something "non-medical" - it is the only way I can maintain sanity (and that is sometimes in question!)
I appreciate your continued prayers. I am feeling poorly right now. I was awake all night from 1:30 AM on .... and now I am quite nauseated from the IV antifungal. I am still running a temperature. I need for this drug to work quickly or a switch to Amphotericin B will be made and it is an extremely difficult and dangerous drug to receive.
This morning's desensitization went flawlessly and I was finished in a bit less than 3 hours. I will go in at 7 AM tomorrow, Sunday, and Monday because a gracious nurse (with previous holiday plans) agreed to come to administer my treatments. God bless you, Angie!
My parents took me this morning and after the IV, I had the wonderful surprise of an early lunch with Lil Man, his Momma, and my parents. I didn't feel well at all in my body, but my spirit soared and savored the moment.
From an earlier post, most of you probably know that I have now been diagnosed with a fungal infection in my lungs. This is reason for concern - consider where mold and other fungi life to thrive - warm, damp, dark conditions - lungs and sinus cavities all possess such conditions.
It has been an emotional, confusing afternoon. At first, I was going to be direct admitted to ICU when I finished my IV hydration post-Rituxan, for desensitization to the IV antifungal Micafungin.
My local oncologist was concerned about adding that since I had just completed the Rituxan. I am concerned about the delay but this plan will keep me out of ICU for the desensitization - I will do that 8 AM at the cancer center. Once desensitized, I will begin daily IV's (around 3-4 hours each) for 28 days, possibly longer.
When I finished the IV hydration at 4:30, my family doctor called and wanted me to stop by the hospital and have a chest x-ray and blood cultures drawn. The hospital had messed up the orders and I was there for almost 2 hours.
The lung x-ray showed that the lower left lobe was partially deflated - that report makes me wonder if my huge spleen has permanently deflated that bottom part of my left lung (since it was like this on the last x-ray in June). I am not certain how often a lung fungal infection will show up on x-ray, but I believe I recall that it is difficult to diagnose it via chest x-ray.
I was already wiped out from 11 weeks of Rituxan, then the sinus/ear/fungal infections of last week. I am just weak and tired and very discouraged and heart broken tonight. I am not surprised about this new infection because I have run a temperature most of the week. I kept relating it to the Rituxan and not infection. My O2 sats were good 97-98, so I believe that is a positive sign. My pulse was increased all day (95-100) and I expected my hemoglobin to have dropped when I saw that, but it was still holding. I have a periodic cough but nothing like the cough I had in June when you were in Iowa.
The WBC had taken a big jump to 28,000. Uric acid and CMP were normal.
I am wondering if the skin fungal infection of last week is somehow related to this new fungal infection? That seems like a possibility. I will now be on three antifungals - cream, oral, and IV.
I am curious if anyone knows if when a fungal culture on lung sputum grows out fairly quickly for a fungal culture (7 days versus the usual 2-3 weeks) if that is an indication that the infection is wide spread or if it indicates a particular fungi? If anyone knows this answer, please e-mail me.
I know the seriousness of this - I must cry out to my Father to rescue me once again.
Specific Prayer Requests: -That the fungal infection will not spread and will respond promptly to the IV medication -That I will not have a drug reaction or side effects from this powerful medicine -That my counts will stabilize and not be decreased by the medication (common side effect) -That God will protect my liver and kidneys from so many powerful medications needing filtered -That my family will be strengthened for yet another 4 weeks of caring for me -That I will find strength to be able to watch Lil Man
Thank you, everyone.
I shall not die but live and proclaim the works of the Lord....
Our daughter called and Larry, her father-in-law, has had a miraculous open heart surgery where 6 bypasses were completed. He weaned off the heart-lung machine without complication and his heart began beating well. It was performed in 4 hours and 20 minutes, much less time than they had anticipated.
They had just been able to see him for the first time and our daughter (the cardiac nurse) said that everything looked perfect - pressures, no drainage, did not require a blood transfusion - we serve a Mighty God - able to intervene and guide the hands of surgeons faced with difficult assignments.
Larry is in ICU and remains on a ventilator (standard procedure). The doctors will attempt to take him off the ventilator later this afternoon/evening - please pray that his lungs begin working just as well as his heart did as it was weaned from its mechanical assistance.
Continued prayers are requested for no infections or complications, a swift recovery, strength for his caregivers, and a return to health for him.
2 Corinthian 10:5 …”Bringing every thought into captivity to the obedience of Christ.”
The instruction found in 2 Corinthians 10:5 is life-changing when applied to our lives. I have purposed to pay attention to this Scripture and obey its instruction. Our thought lives can wreck havoc in our lives, if we allow thoughts and emotions to run unbridled. Thoughts can depress us, discourage us, upset us, infuse despair, and confuse us. Thoughts brought “into captivity to the obedience of Christ” will be positive, encouraging, uplifting, Christ-like, faith-filled, and life changing.
Paying particular attention to our thought lives is a vital skill to master for the Christian. I write this with authority because I have battled cancer for over 13 years along with several other serious health challenges in our own family and I, with God’s help, have been able to remain positive and not negative; uplifted and not defeated. Without purposeful study of His Word and paying attention to my mouth and the words it speaks and my mind and the thoughts it thinks, I am certain I would have been defeated years ago.
Our minds are swarmed with negativity, instruction that is contrary to God’s Word, and perversity in movies, music and books. We cannot expect to glide through this life with our own power and expect to emerge unscathed by the sin that “so easily ensnares”. Doubt is sin. Fear is sin. Confusion is not of God. It is much easier to allow our mouths to spout off whatever our flesh directs and to think whatever thoughts cross our minds. It is not natural to measure our thought life and our words.
How will we recognize growth in this area … when our words begin to imitate Christ’s words….. when we are confident that our thoughts are not His thoughts.
Let us consider the subject of thoughts and meditate on what God’s Word tells us about thoughts.
GOD KNOWS OUR THOUGHTS Matthew 9:4 Knowing their thoughts, Jesus said, "Why do you entertain evil thoughts in your hearts?
FIX OUR THOUGHTS ON HIM Hebrews 3:1-3 Therefore, holy brothers, who share in the heavenly calling, fix your thoughts on Jesus, the apostle and high priest whom we confess.
WHY SPENDING TIME IN HIS WORD IS VITAL Hebrews 4:12 For the word of God is living and active. Sharper than any double-edged sword, it penetrates even to dividing soul and spirit, joints and marrow; it judges the thoughts and attitudes of the heart.
I pray that God will guard my mind until I depart from this earth. I do not want influences from the enemy of this world to dissuade me from holding my thoughts “captive to the obedience of Christ”. I do not want emotion and other frivolous attempts to discourage me, to take up residence in my mind. Since He knows my thoughts, I want to be diligent in keeping them pleasing to Him.
Please pray for my son-in-law's father, Larry. For those of you who have been following the blog, you realize today is the day for his open heart surgery to do 5-7bypasses. I also ask that you pray for peace and endurance for the family.
I am at the cancer center receiving my final dose of Rituxan for Week 11. Next week will be the last week. Thank God. I had labs drawn this morning and should have results to post later today - they were ordered Stat so that we will have results by the end of the day. I had another sleepless night from nausea, diarrhea and bone pain. I need rest desperately.
If you have watched the movie A Christmas Story, you most likely recall the father being notified that he has won a "Major Award". He anxiously awaits its delivery. A large crate is brought to his home and as his wife and two sons eagerly look to see what his "Major Award" is - the father uncrates a lamp made from a stockinged leg from a lady's mannequin.
Many people have helped me through this long summer of leukemia treatment. However, three people have helped me almost everyday. Their commitment to me, my health needs, and just making me comfortable has been unending. I have been driven to and from the cancer center (I guess no one trusts my driving the "magic carpet" while under the influence of so many drugs!The magic carpet is what I refer to my car as when I drive it while ill and do not remember the drive home.) I imagine that is why I am chauffeured each day. They have helped me with Lil Man, prepared meals for me, delivered lunch to me at the cancer center, delivered treats to my nurses, and so much more. I could never repay all of the help that Kevin, Mom and Dad have given to me this summer.
At this time, I graciously present each of them with a "Major Award" - I know it will make them proud. (Remember I am presenting these awards while heavily medicated and after a night with two hours' sleep.)
A brief overview of the Book of Ephesians - read through this overview and improve your faith walk and relationship with God. His Word is straight-forward in telling us how we should and shouldn't live in order to receive His blessings and the presence of the Holy Spirit actively working in our lives.
-We should be holy and without blame before Him in love -He works all things according to the counsel of His will -We are sealed with the Holy Spirit of promise -He will give to us the spirit of wisdom and revelation in the knowledge of Him -He made us alive while we were still dead in trespasses and sin -God is rich in mercy because of His great love with which He loved us -By grace we are saved through faith -We are His workmanship -He Himself is our Peace! -In Him we have boldness and access with confidence -He is able to do exceedingly, abundantly above all that we ask or think -Walk worthy of the calling with which you were called -Endeavor to keep the unity of the Spirit in the bond of peace -We should no longer be children, tossed to and fro and carried about with every wind of doctrine, by the trickery of men, in the cunning craftiness of deceitful plotting -Be renewed in the spirit of your mind -Put away lying; speak truth -Do not let the sun go down on your anger -Give no place to the Devil -Let no corrupt word proceed out of your mouth. -Do not grieve the Holy Spirit of God -Let all bitterness, wrath, anger, clamor and evil speaking be put away from you -Be kind to one another, tenderhearted, forgiving one another, even as God in Christ forgave you -Be imitators of God -Walk in love -Walk as children of light -Have no fellowship with the unfruitful words of darkness, but rather expose them -Do not be unwise, but UNDERSTAND what the WILL of the Lord is -Do not be drunk with wine -Give thanks for all things, continually -Wives, submit to your husbands -Husbands, love your wives just as Christ also loved the church -Children, obey your parents. Honor your mother and father that it may be well with you and you may live long on the earth. -Fathers, bring your children up in the training and admonition of the Lord -Put on the whole armor of God that you might be able to stand against the wiles of the Devil -We do not wrestle against flesh and blood, but against principalities, against powers, against the rulers of the darkness of this age, against spiritual hosts of wickedness -Having done all, stand -Pray always with all prayers and supplication in the Spirit
I am receiving Week Eleven of this ongoing treatment today. The infections are still present in my sinuses and the fungal outbreak on my skin. I decided to proceed with the treatment despite the infections and I hope that I made the correct decision.
I was up most of the night not feeling well. So, between the lack of sleep and the benadryl premedications, I am very groggy this morning. Labs will be drawn tomorrow. Three more days of treatment and I will have completed the entire twelve weeks, twice weekly treatments. Hooray!
A CLL expert told me to expect it to take around three weeks for all of my counts "to settle" and then we will be capable of more fully analyzing my degree of success with the Rituxan.
In the beginning ....... God created my husband and me. From our family of two, three beautiful daughters were born. Those three daughters brought three sons-in-law to our family. And from one daughter and son-in-law came Lil Man.
Photo 1 shows my husband at around 6 months. Photo 2 shows me at about age 1. (See where all the curly hair in this family originated?)
Twenty-five years ago, I gave birth to premature baby girls. One of those baby girls weighed three pounds. She was a fighter and God strengthened her and helped her to survive many obstacles. She was born with a ventricular heart defect, a cleft palate, was in respiratory distress and on a ventilator, and survived a bleed in her brain that doctors predicted “could make her learning disabled”. I remember sitting by her incubator (and her twin’s) rubbing her little leg, not much larger in dimension that a marker or small twig. The palms of our hands cradled and encompassed her tiny head. The heel of a woman’s sock (embellished with lace) was the closest thing to a hat that would fit her tiny head. We never doubted God for these two precious packages delivered to us, to survive and thrive.
Fast forward twenty five years. This tiny baby, nursed and nurtured by medical professionals, today begins her internship as a nurse practitioner. In her white coat, name tag, and office with her name on the door, she is about to launch her new career as a nurse practitioner. The nursed premature baby has grown into a successful, caring health care provider. God has used her hands and mind to save lives as a cardiac nurse. Families of her patients tout not only her nursing abilities but also her compassion and concern for patients AND their families.
I know the health challenges she and others in our family have faced have sculpted and prepared her for this career. Some proficiencies cannot be learned from textbooks and professors – skills such as compassion, integrity, kindness, empathy, and a deep desire to help mankind. Stephanie did not enter this field in search of a well-paying career with exceptional job security. Life dealt her a difficult beginning with challenges paving her pathway over many years. Unlike many people who dwell on their challenges and allow them to rob hope and dreams, she grasped knowledge and experiences of a heart patient, developed into an exceptional cardiac nurse and now begins her new life journey to touch and heal and believe in her patients, just as those neonatal nurses in 1984 believed in her.
We continue to ask for your prayers for our son-in-law's father, Larry and his wife Sally. Larry was scheduled to have major open heart surgery tomorrow. It has been rescheduled until Thursday of this week. I am a firm believer that God's timing is always high above any plans or schedules that we are trying to maintain. This extra day provides another day for prayer and I believe for perfection in preparations to be made for him.
Please keep Larry and his family in your prayers on Thursday and for the upcoming weeks of recovery.