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.

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.

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

It’s now Wednesday and I so want to go home. The problem is I keep spiking temps >101 in the afternoon or evening time. The teams knows something is going on but to date all the cultures have been negative. Dr Henry came by and said I can go home Friday if my temp stays < 100.5. Yahoo! I can do that! I haven’t had a temp > 99.5 in 18 hours Their rule is 24 hous then I can go home.
Praises to our Lord and Savior!- Steph

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UPDATE: Darn it! I no more sent a couple of texts when a fever came from no where. I had full rigors. This fever scared me. It reminded me of the time I went into septic shock. I hit 101.9 and then 102.7 in a matter of minutes. Man oh man did I feel bad.
God’s time Steph, God’s time…

Monday I was running fever and had chills & bone pain. I went to the clinic and they decided to put me in the hospital (Baylor All Saints) for observation: give me fluids and antibiotics and most likely send me home on Tuesday. We know this will be a minor event and I will be home again soon. God is in control.

Grace & peace - Steph

What we know is in June the disease was spreading like wild fire. In Houston they had about 4 protocols they felt might be effective. They took the +/- of the whole picture and chose the drugs they felt offered us the greatest hope. The protocol slowed the disease and even brought my liver enzymes into a normal range. About a month ago, under extremely high surveillance, they began to see hints things were changing. They needed to wait about two months between PET/CT scans. The news is what we posted below. The disease is again progressing with involvement now being: liver, bone and lymphatic system. We managed five months on this protocol.

The goal of chemo with metastatic disease is to maximize the timeframe to progression of disease and increase overall survival. They leave the patient on the drugs until they no longer tolerate the drugs, they are no longer effective or the patient is in remission. It is recognized that as a whole the goal is to extend a patient’s life and every once in a while they are able to put the patient into remission. While we recognize this is all true, we anxiously hold out for the greatest outcome: the miracle of remission. We struggle when we fall short of remission. I would say those that love me struggle too.

Today we started a new protocol with the same hope and dream we have add for each treatment plan: extending my time with the ones I dearly love. We must always remember the blessings we have and to maximize today’s joy.