I have been awake nearly every hour. I am going home today and I’m excited. They are sending me home on two antibiotics and I am to follow up with Dr Young the first of the week. Chemo is due Friday and the question remains will be do we proceed or hold for Christmas. Thanks to all who have said prayers and sent messages of support. 

With this stay they discovered I have Sweet Syndrome. Rare, it can occur in patients that receive Neupogen. I take Neupogen to boost my white cell count on a weekly basis. It is treatable but it can also complicate the treatment plan for chemo. We will continue to fight.

Most importantly I am home and surrounded by an enormous circle of friends and family. We love you all.

Grace & Peace this holiday season.
Steph, John, Jennifer & David

The Infectious Disease doctor came by. He’s going to keep me in the hospital to finish up my IV antibiotics (Vancomycin) and finish the remaining course of pills at home. What does this all mean? I AM going home Saturday. We are all excited! We have cats and Zak thinks I’m his Mother. He cries daily looking for me. When I get home and he will ignore me for a day or two and then be attached to me.

The Oncology team is giving me my scheduled chemo (Avastin) today. They are also resuming Xeloda. I should have taken it for two weeks and I only took it for one week. I will go back to clinic next week and see what our plan is. The rash and sores are all diminishing so they are holding on steroids for now.

Sweet’s syndrome is a skin disorder characterized by fever and painful skin lesions. The condition starts suddenly with the appearance of red, slightly raised and tender bumps (plaques), usually on your back, arms, face or neck. These painful bumps rapidly increase in size, and they may progress to blisters. In most cases, the cause of Sweet’s syndrome is undetermined. However, Sweet’s syndrome may follow an upper respiratory infection in young adults. Rarely, Sweet’s syndrome may occur as a reaction to medication. In older adults, Sweet’s syndrome can be associated with certain types of cancer, such as leukemia. Sweet’s syndrome occurs most often in women 30 to 50 years of age. Treatment of Sweet’s syndrome, also known as acute febrile neutrophilic dermatosis, is with oral and/or topical medications.

Signs and symptoms
The distinctive skin lesions are the most obvious sign of Sweet’s syndrome. The lesions seem to appear suddenly as a series of small red bumps that quickly increase in size. The bumps, also called plaques, may grow to be 1 centimeter in diameter or larger. Plaques usually appear on your back, neck, arms and face. These tender and painful eruptions may develop blisters, pustules or ulcers, causing your skin to burn or itch. The skin lesions may persist for weeks to months and then disappear on their own, even without medication. With medical treatment, you’re likely to be free of skin lesions within just a few days.

Sweet’s syndrome may be your body’s reaction to an internal problem, so it’s possible for you to develop the skin lesions at the same time you’re experiencing problems with your bones, nervous system, kidneys, intestines, liver, heart, lungs, muscles or spleen. Some of the other specific signs and symptoms of Sweet’s syndrome may include:

• Moderate to high fever
• Pink eye (conjunctivitis) or sore eyes
• Tiredness
• Aching joints and headache
• Mouth ulcers

Causes
The cause of Sweet’s syndrome is usually impossible to determine (idiopathic). But in some cases, it may be your body’s immune system reacting to one of the following conditions or circumstances:

• An upper respiratory tract infection, such as a chest infection or strep throat
• Blood disorders, including leukemia in older adults (especially acute myelogenous leukemia, a cancer of the blood and bone marrow)
• Inflammatory bowel disease, such as ulcerative colitis or Crohn’s disease
• Bowel or breast cancer
• Pregnancy
• Rheumatoid arthritis
• An injury at the site where the rash appears, such as from an insect bite or needle prick
• Certain medications, such as nonsteroidal anti-inflammatory drugs (NSAIDs), Neupogen

Risk factors
Women are most at risk of Sweet’s syndrome, predominately women between the ages of 30 and 50 who have recently had an upper respiratory tract infection. The condition has also been reported in children as young as 3 months and in adults as old as 85. Pregnant women may get Sweet’s syndrome during their first or second trimester. In these cases, the condition usually goes away without medication.Sweet’s syndrome tends to recur. About one-third of people who have had Sweet’s syndrome get it again.

Screening and diagnosis
Your doctor can make a diagnosis of Sweet’s syndrome by:

• The distinctive rash. These red, tender and painful bumps rapidly increase in size and may progress to blisters.
• Blood tests. Your doctor may take a small sample of blood and have it analyzed to see if you have an unusually high number of white blood cells, which is characteristic of Sweet’s syndrome. Your body produces additional white blood cells to defend against inflammation or an infection.
• Tissue sample. Your doctor may remove a small piece of affected tissue (biopsy) for examination under a microscope. The tissue is analyzed to determine whether it has the characteristic abnormalities of Sweet’s syndrome.

Complications
Sweet’s syndrome may be a warning sign that your body has a more serious internal problem. For this reason seeking medical care is critical.

For example, Sweet’s syndrome sometimes develops as your body’s reaction very early in the course of cancer, possibly at a curable stage. Sweet’s syndrome may also develop at the same time as other internal problems in your bones, nervous system, kidneys, intestines, liver, heart, lungs, muscles or spleen. Some specific examples of these conditions may include:

• Inflammatory bowel disease
• Infections of the upper respiratory tract, including strep throat, pneumonia and tonsillitis
• Urinary tract infections
• Infections of the liver and gastrointestinal tract
• Certain systemic infections

Treatment
Left untreated, Sweet’s syndrome not associated with a malignancy may disappear on its own within one to three months. In contrast, the right treatment may improve the skin lesions and associated symptoms dramatically in just two or three days, with the worst of the lesions disappearing within one to four weeks. With or without treatment, the plaques and lesions rarely leave a mark or scar when they eventually disappear. Your doctor may advise continuing treatment because recurrence of the condition is common.

Medications
Doctors typically prescribe systemic corticosteroids (prednisone or prednisolone) to treat Sweet’s syndrome. These oral anti-inflammatory medications lessen redness, itching, swelling and allergic reactions. But there are potential side effects. Corticosteroids may lower your resistance to infections. Also, any infection you get while taking corticosteroids may be harder to treat. Corticosteroids may also cause blurred vision, frequent urination and increased thirst. Your doctor may also recommend topical corticosteroid treatments to provide direct relief of redness, swelling, itching and discomfort of skin  lesions. In addition, your doctor may suggest that you take nonsteroidal anti-inflammatory drugs (NSAIDs) such as aspirin, ibuprofen or naproxen sodium to reduce inflammation and relieve other signs and symptoms, such as fever and headache.

Reference: http://www.mayoclinic.com/print/sweets-syndrome/DS00752/DSECTION=all&METHOD=print

I received the results from my echocardiogram and they were not able to rule out vegetation on the valves. It did show moderate pulmonary hypertension & tricuspid regurgitation. The bad thing is I was alone & asleep when doctor came. They had medicated me for a bout of pain & nausea and I was not the sharpest rock. They will continue to consider a transesophageal echo pending the results of the white cell scan. Today I am having the last phase of the White Cell Scan completed. It is a special body scan that will look for pockets of the radioactive WBCs. I am now running low grade with nothing over 100. It’s about time! The team received the results from the WBC scan which did not indicate a massive infection anywhere.

I think they found it! Earlier in the week they took a skin biopsy from my rash. It came back indicating Sweets Syndrome (SS) which is a rare reactive systemic disease characterized by acute fever and painful skin lesions. It is not “just a rash on the skin” as it effects the entire body. The condition starts suddenly with the appearance of red, slightly raised and tender bumps, usually on your back, arms, face or neck. These painful bumps rapidly increase in size, and they may progress to blisters.

Sweet’s syndrome

1. May follow an upper respiratory infection in young adults
2. Can be associated with certain types of cancer, such as leukemia
3. May occur as a reaction to medication like Neupogen
4. Occurs most often in women 30 to 50 years of age.

Sweet’s syndrome treatment is oral and/or topical medications. Sweet Syndrome is traditionally treated with steroids (prednisone). There are also other drugs used for patients whom steroids are contraindicated.

A WBC scan is a nuclear scan in which a radioactive material is attached to a sample of white blood cells. It is done to locate areas of infection or inflammation that are hidden from traditional tests. Blood is taken from one of your veins. White blood cells are separated from the rest of the blood sample and then mixed with a small amount of a radioactive material (radioisotope) called indium-111. The cells with the radioactive material are considered “tagged.” About 2 or 3 hours later, the tagged white blood cells are returned to your body through injection into a vein. The tagged cells gather in areas of inflammation or infection.

Approximately 24 hours later, your body is scanned. You lie on a table. The scanner looks like an x-ray machine. It detects the radiation given off by the radioactive white blood cells. A computer converts the detected radiation into an image that can be viewed on a screen or recorded on film. The scan takes about 1 or 2 hours. The scanner is usually located in a hospital, but often the test can be performed on an outpatient basis. After the test is completed, no recovery time or special precautions are necessary.

A normal result means there are no accumulations of tagged cells (except for a certain amount in the liver and spleen, which normally accumulate white blood cells). Abnormal results usually suggest an active inflammation or infection, such as a liver abscess or abdominal abscess.

Today we received the results from my chest and abdominal Cat Scan (CT). They did not have results from the echocardiogram yet. The chest CT was unchanged from one taken here in September. The abdominal CT showed an enlarged spleen. The gallbladder is abnormal with fluid around it and most likely the source of our infection. They added an additional antibiotic. They are ordering a white blood cell scan. I will add an additional post that explains the test. It is very interesting. The liver showed improvement from the September scan. This further confirms the last protocol did give us good results. AWESOME!! 

Physically I am feeling better. I continue with elevated pain but we are able to manage it with IV medications. I am hoping I can eat more now that my throat and mouth sores are better. I still have my “melting spells” in the afternoon into the evening. We all have high hopes we will not have a temperature spike tonight. I know we are gaining ground on the infection and before long have it tackled. Dr. Young has consulted a dermatologist to evaluate my rash and biopsy it. She showed this evening and completed the task.

As I pull back and look at the whole picture diagnosing an infection in an oncology patient must be quite tricky. The signs & symptoms of an infection get mixed in with side effects from chemo. I really admire my team. Keep the faith for I am not alone in this latest battle. Footprints: I have one set of footprint followed by thousands. Thank you!

It’s Sunday and I am still at Baylor All Saints. It’s a good thing I like these guys. Their oncology floor is really nice and the staff are all wonderful. The floor is very accommodating for families and patients. I know what are you thinking… give me the update girlfriend and quit rambling.

Other than the fever I have not offered many clues to help the doctors determine the cause of my illness until last night. To date, all cultures are negative. I continue to have bouts of fever in the late afternoon and evening. Yesterday they added an antiviral medication and drew more lab work. Overnight I developed red hot palms and feet. They believe this is from the Xeloda I have continued to take so they are stopping it. I have an odd pinpoint rash & blisters. They are ordering an echo cardiogram to rule out any infection in the heart. I am wheezing and have a painful mass in my abdomen. They are ordering a CT Scan of the chest and abdomen. They are adding a high power antibiotic: Vancomycin.

I have completed all the ordered tests and am eating and writing my update. As I finish typing my update I am beginning to shiver just a bit. Yes my friends it must be fever time once again. We look forward to Monday and are reminded of the Proverb we were given nine days ago.

Trust in the LORD with all your heart: do not depend on your own understanding. Seek his will in all you do, and he will direct your paths. Proverbs 3:5-6

I received some very exciting news this morning from Cissa. Cissa via an email  is a member of “Team Talent”, our Komen group from LA. The Ad Agency has completed the layout of the >>> Komen full page ad <<< for Oprah magazine. Guess who has a photo on the ad. Through guessing? David and Myself. Cissa has the showcase photo and along the bottom of the ad are thumbnail images. We are there. As soon as I get more news, like which month, what magazine, I will post it.

I saw Dr. Young early this morning. She is very glad I did not go home last night. She is getting an Infectious Disease (ID) consult to see if they have any more to add to this mystery fever. I have a small cramp behind my right knee and she has ordered a Venous Doppler study to check for blood clots. The scan was completed and all that was seen was a cyst behind the right knee, good news.  My ID Doctor came by and is starting his hunt for the mystery fever. I had a good afternoon but as usual I had my early evening meltdown. This came on slow and lingered until 4 am. I am guessing it will be Sunday before I go home although I suppose the team could send me home today. Yesterday’s Max Temp was 100.9. Their cutoff is 100.5