Good News - Bad News

The good news is that Jan’s white blood cell count continued to increase today. As mentioned earlier, the number we are waiting to see is an ANC reading of at least 500. ANC stands for Absolute Neutrophil Count. Approximately 50-60% of white blood cells are neutrophils and are needed to fight infection. The doctors have determined that a reading of 500 cells per microliter is sufficient to allow Jan to be discharged. Her reading today was 210, so she is well on her way. At this rate, it is possible that Jan will be discharged this weekend.

The bad news is that we learned today that there may be another hospital stay needed in the near future. The chemotherapy treatment for Jan’s type of leukemia calls for two phases, one the induction phase, and a second phase called the consolidation. Jan has completed the induction phase during these past six weeks. The consolidation phase requires an additional five days in the hospital within two weeks of her discharge. So it is very likely that she will be required to return for additional chemotherapy within two weeks of her discharge. We knew that there would be a consolidation phase, but we had no idea that it would require additional hospitalization, or that it would be necessary so soon after she is discharged. This was not welcomed news. The positives include one to two weeks at home around familiar and comfortable surroundings, no I.V. bottles or daily blood samples, no vital signs taken at 2:00 A.M., and no hospital food.

Tuesday - November 27 - Day-40

The broncoscopy procedure on Monday went well. They arrived at 7:15 A.M. and wheeled Jan down by stretcher to the procedure room. She was given topical anesthetics in her mouth and throat, and some additional sedation. The pulmonary team flushed an area adjacent to the infected site, and aspirated the fluid into a collection tube. If sufficient numbers of bacteria and or fungus cells are gathered and can be grown in culture, then a definitive identification can be made and specific treatment administered. She was returned to her room after about an hour. She was pretty groggy, and her voice was very hoarse the remainder of the day.

Jan’s white count made gains today, jumping from 260 on Monday to 560 on Tuesday. Of course, the normal white count for most individuals is between 5,000 and 10,000, so she is still at only about 10% of the minimum. For you math majors out there, the counts are per microliter, which is 1/1000 of a milliliter. There are about 30 milliliters in an ounce. For all the nurses in the family, there are as you know about six different types of white blood cells. Two of those are called neutrophil bands and neutrophil polys. When the total of these two specific types of white blood cells reaches 500 we can discuss the “d” word…………..discharge. Today her magic number was 70. So we are about 15% of where we need to be to go home!!! We are hoping for bigger numbers every day. The countdown to 500 has begun.

Sunday, November 25th - Day - 38

Jan’s chest pain was managed fairly well on Saturday, thanks to several doses of morphine. The results of her contrast Cat-scan confirmed that some infection activity is going on in her lungs. The pain today has been much improved, and has been controlled by oxycodone. According to the Internet, oxycodone is the most powerful pain medication that can be given by mouth. We hope that her pain will diminish as the new antibiotic (micafungin) does its work.

Today included a series of visits by infectious control doctors, as well as pulmonary physicians. They reviewed the Cat-scan results with us, and in fact one of the doctors actually took me aside to display the Cat-scan photos on a computer and went into some detail explaining the results, and comparing them to a similar Cat-scan which was done about three weeks ago. After that demonstration, I have a new respect for medical technology. After all the discussion, our options were reviewed with us. Option-1 would be to order a broncoscopy, which would allow them to insert a light with camera to an area near the infection. They would then flush and collect cells from the surrounding area and send them off for culture. If enough cells are collected, they can culture for bacteria as well as virus. The primary issue with this option is that the infection sites are on the extremities of the lung making it difficult to navigate the medical instruments to an area that is as close as they would like. However, they believe that they can get close enough. If enough cells can be collected to culture, then the specific organism can be identified, and the appropriate treatment confirmed. Option #2 would be to do a surgical biopsy of the affected area. The problem with this procedure is bleeding. Since Jan’s platelet count is low, bleeding of any kind can be problematic. Option #3 is to stay the course, and order no tests. The doctors are fairly confident that they know the organism that they are dealing with, and administering the proper antibiotics. However, in this business, “fairly confident” is not a term the doctors are comfortable with. The prefer words like “definitely and conclusively”. Most of us have white blood cells that would probably handle this infection without our even knowing it. But in Jan’s case, she has no white blood cells, and no defense mechanisms. At this point, we asked the lead pulmonary physician what he would select if it was him. He said he would opt for the first option, so tomorrow Jan is scheduled for the bronchoscopic procedure that will hopefully confirm that we are on the proper course of treatment, or will help identify what that course should be.

Saturday - November 24 (Day-37)

Thursday and Friday were more of the same. The “same” consists of I.V. bottles eighteen hours a day, white blood cell count remaining near zero, blood cultures done because of a spike in temperature, four tubes of blood drawn every morning at 3:30 A.M., vital signs every two hours, continued mouth sores, and lack of appetite. Jan had the same breakfast, lunch, and dinner on Thanksgiving Day and on Friday…….Instant Breakfast in the morning, soup and Boost for lunch, and soup and yogurt for dinner. For lunch and dinner on Thanksgiving I had chopped vegetable lasagna. While I’m certain it was nutritious, it was not quite the lasagna that my dad fixed as I was growing up.

This morning around 5:30 A.M. Jan woke up with chest pains on the right side of her chest which extended all the way to her back. The severity of the pain increased for the next hour causing the nurses and doctors to huddle and begin to order tests and pain meds. She was given three injections of morphine which really did not help the pain very much. Two separate EKGs were run, an X-ray machine was brought into the room to obtain a chest X-ray, more blood cultures were ordered so a separate I.V. line had to be inserted, and around 10:45 Jan was taken for a contrast Cat-scan. The doctors are speculating that some activity is going on in her right lung. They plan to wait on the test results and adjust her medications as necessary. In the meantime, stronger pain meds have been ordered and will be administered as needed to keep her somewhat comfortable. We also continue to wait for lab results that will indicate that her white count is going up. According to the attending physician, it’s possible that if any sort of problem exists in her lung, the few white cells which are in her system have relocated to that area, and thus are not identified in her daily blood sample.

Wednesday - November 21 - Go Bulls !!!

Jan has now had three abdominal injections to help speed the production of white blood cells. Her lab results do not yet reflect any increase; however, this is expected and we believe we will begin to see some increase in the next day or two. Her primary complaint continues to be the mouth sores which make for painful eating, drinking, and swallowing. Foods still have very little taste.

As season ticket holders for the USF Football and Basketball teams, we have been particulary proud of the football team this year. At one point they were actually ranked as the number two team in the country. Well this afternoon we had a surprise visit from Doug Woolard, who is the Athletic Director for the University of South Florida. He presented Jan with a USF T-Shirt which had been autographed by some of Jan's favorite players including Quarterback Matt Groethe, Linbacker Ben Moffitt, Running Backs Jamar Taylor & Mike Ford, Defensive Backs Mike Jenkins & Trae Williams, and Defensive End George Selvie. It was a totally unexpected surprise, and we have the shirt prominently displayed in her room. We later learned that the culprits who pulled off this nice surprise were Jan's brother Pack, and her sister Patti. They contacted the university and arranged the whole thing. What a family!!!

BEST THANKSGIVING EVER !!!

We just got the news that the pathology report revealed no leukemic cells. This is the news we've been waiting for. This means that Jan is officially in "remission", which means that we can now set our sites on going home. We will have a lot to be thankful for this Thanksgiving. The plan now is to build Jan's white count up to an acceptable level which will make it safe for her to leave the hospital. This will include daily injections in the abdomen to help speed the process of producing those white cells. She will gladly endure these daily injections since each one will put us one day closer to going home. We want to thank everyone for your thoughts and prayers. Obviously many of your have a close connection with a higher authority and your prayers were answered. As each of you give blessing this Thursday, please say a special "Thank You" for this good news.

Sunday - November 18th.

Hard to believe, but today makes one month since Jan was admitted to the hospital. We continue to count the hours until the pathology report from Friday's bone marrow biopsy is released, probably late tomorrow afternoon. In many ways the waiting is more difficult for Jan than the constant I.V.'s, the loss of appetite, the chest pains, or rashes. A favorable report will mean that Jan can set her sights on a discharge date, probably in a week to ten days. An unfavorable report will mean that we have more work to do, and her hospital stay will be extended. An unpleasant new development in the past two days has been mouth sores which have invaded the inside of Jan's mouth on her tongue and throat. This has made drinking or eating anything very painful. This is giving her a lot of discomfort, so hopefully it will improve soon. Her nurse gave her a mouth rinse this evening which included a topical anesthetic, and that gave her some relief. We will post the news on the biopsy as soon as we have it.

Friday - November 16th.

The past two days have included more anticipation of today’s bone marrow biopsy. If the number of leukemia cells is found to be sufficiently low, then Jan will be considered to be in a remission and we can begin to think about going home. It would still be at least a week before her white count would build to the minimum level which the doctors would consider to be safe. She would still need to avoid crowds, or anything which would pose an unnecessary risk. I f the results of the biopsy do not produce the desired results, then possibly a third round of chemo would be ordered, and our hospital stay could be extended another twenty days. It is now 11:00 A.M. and Jan has just returned, via a stretcher, to her room. She’s been gone about two hours. I’m sure that she will soon need to be medicated for a painful hip (which has been the drill with the three previous biopsies).

The pictures you see here are of the sculpture garden located in front of the hospital. Jan and I try to spend some time daily sitting by the waterfall and enjoying life outside of a hospital room. The weather lately has been perfect for waterfall-listening.

Tuesday - November 13th.

The past two days have been difficult from an emotional standpoint. First, waiting on the next biopsy report is nerve wracking. It's hard keeping the negative "what if's" out of your mind. We are hopeful for a positive pathology report next Monday; BUT "what if"..... Our hospital stay is already approaching four weeks on Thursday. The days seem to drag by slowly. We all just want to go home; BUT we also know that we want to be in remission. So, we put our trust in the professionals at Moffitt, knowing that they too want us out of here as soon as possible. Adding to the emotional distress is the fact that we had to put our cat of nineteen years, Granite, to sleep on Monday. He lived a good life, but in recent months had lost half his body weight, and we decided it was just time to let him go. Those of you with pets understand how difficult it is to lose a pet. Jan did have another precautionary chest Cat-scan last night. They like to run these every two weeks. We also learned that they will try to move up the biopsy date from next Tuesday to this Friday. We need good numbers from this report!

Thank You !!

I have been remiss in not mentioning the gifts, cards, and well wishes I’ve received to date. I hope you don’t mind that I don’t mention you directly, but I think you’ll know who you are and what your wishes mean to me. I’ve received candy, mints, gum, balloons, scarves (of all types to keep the old bald head warm), a menagerie of stuffed animals (that represent family members) that watch over me each day and night, sleep pants, soft socks to keep my tootsies warm and looking really cute, and scrub tops (Eyore, Scooby Doo, Cats, Tweety Bird.).

I’m always surrounded by the love from my family, Tony, Jeff, Lalania (Lucas, Anna, and Camille), Jason, Kim, Christy, Bill, Kerry, Jennifer, Alicia, David, John, Mom and Dad Scolaro, Mom, Pack, Jay and Christine, Elaine and Byron, Mendy, Steven, Shannon, Elise, Brannan, Patti and Bobby, Kevin, Amy, Jackson, and Ethan and extended family Carey, and Alexis, Terri and Eduardo, Robert, and Jessica. Their love and best wishes are the best kind of medicine.

I’ve received wishes of love from my precious ones in Utah that mean so much to me, wishes from friends from the past, special neighbors, a custom card maker, and words of comfort and strength from family members not heard from in a while. I’ve had wishes from dogs, frogs, hamsters, a monkey, a sickly basset hound, a chimpanzee from Washington, DC, cats, more cats, even more cats, badgers, Mickey Mouse, ducks trying to spell, a rabbit trying to make me “feel good”,

I have also received cards and gifts from all my friends at the U.S. Postal Service. Thank you guys.

My co-workers seem to want me back in the office. They keep whining about having to do my work when I’m not there. Trust me guys, I’d much rather be there. I really appreciate your words of strength and comfort, but especially the funny witticisms that come from everyone.

Sunday - November 11th.

If no news is good news, then I have good news. Jan has been feeling better the past two days. The rashes are fading (ever so slightly), and her appetite is improved. The nightly reactions to the steroids (or "roid rage" as Jan has termed it) diminished the past two nights, so that was a relief. Jan had her fifth, and final, chemo session last night. This completes Round-2, which we hope will be the final installment in our attempts to rid her system of leukemia cells and put her into a remission. She is scheduled for another bone marrow biopsy on November 20th, so we have to wait at least nine more days before we know the outcome. The waiting is almost as bad as the treatment.

Thanks to the Staff at Moffitt Cancer Center

We have to take a moment to thank the staff at Moffitt Cancer Center. It’s always easy to complain about being in the hospital, but we are so very thankful to have this facility, and be surrounded by a wonderful staff of doctors, nurses, and techs. These folks come from a variety of backgrounds from around the country, and around the world. However, no matter how diverse their backgrounds, they all share the same qualities. They are all very bright, and extremely dedicated, compassionate caregivers. These folks work twelve to fourteen hours a day, and still have time on their way out to stop by your room with a smile and say “see you tomorrow”. They all chose oncology as their field of expertise, not because it was easy, but because it was hard. That alone tells you a lot about their character. In the past three and a half weeks we have come to appreciate them more, and more, each day. The attending physicians include Doctors Chervenick, Lancet, Sokol, and Pinilla. The fantastic RNs include Patrick, red-headed Mary, Linda, Mary Lee, Janet, Karen, Renate, Olu, Serena, and Tysha. And the terrific techs include Marlyn, Aileen, Aida, Ada, Iris, Amy, Lucy, and Teju. Thank you all so very much!!

Friday - November 9th

It's about 11:00 A.M. now. Jan had a good nights rest, considering they wake you up at 3:30 A.M. to weigh you, change I.V. meds, draw blood, and take vitals. She completed her third chemo treatment last night. Three down, two to go. Then wait a week and perform another bone marrow biopsy (number 4 if you're counting). Her days have been good, but her evenings have been rough. Since being on this second round of chemo, each evening around 8:00 P.M. her demeanor changes. Her anxiety level kicks in to high gear, with overwhelming feelings of apprehension and agitation. Overall, just a feeling that things aren't right. The doctors claim this is a normal reaction, commonly attributed to the steroids that are given just prior to administration of the chemo. Fortunately those feelings subside after three or four hours, but those hours have been, by far, the roughest part of round two. This morning she had a cup of hot chocolate and a piece of cinnamon toast. We're still very thankful for this facility, the doctors, nurses, and level of care that Jan is receiving. As we walk the halls we have met several patients and/or their spouses. All of them have stories just like ours. I've driven by this hospital many times in the past and never given a second thought to what goes on in here. I'll be much more mindful in the future.

Wednesday - November 7th.

The second round of chemo started at 4:00 P.M. on Tuesday. It will be comprised of three drugs. The first is Cytarabine. This is the same drug that was given during the first round of treatment, only this time it will be at ten times the dosage. The other two drugs are Etoposide and Mitoxantrone. They will be given over a five day period, then a five to seven day wait, followed by another bone marrow biopsy. Jan felt a bit out of sorts after the first dose. The drugs can have neurological effects so they have Jan run through some mental and physical drills to see if there are any impairments. Today (Wednesday) was actually a fairly good day. Jan had a small (very small) appetite. She ate a half bowl of cereal for breakfast, a half cup of soup and about ten french fries for lunch, and a bowl of rice for dinner. While this doesn't seem like much, it was a dramatic improvement over the past few days. We also managed about a twenty minute walk outside the hospital. The weather was absolutely perfect. Late in the morning she was summoned for a sinus cavity Cat-scan, and later in the afternoon was taken for another chest x-ray. All precautionary, we presume. She spiked a fever on Tuesday night, and the doctors are quick to make sure no infection is looming. Later in the day she opened some gifts, and when I left for work around 7:00 P.M. she was on the phone. All in all, a pretty good day.

Jan noticed on Monday that her hair was starting to fall out. So yesterday evening, with the help of son Jeff, shaved her head bear. So the whole hair deal is now a done deal. She sported a very snappy pink head cover today, and looked great.

Tuesday: Not the news we were hoping for.....

We received the news yesterday around 5:00 P.M. that the bone marrow biopsy still indicated the presence of leukemic cells. This means that Jan will require a second round of chemo starting today (Tuesday). They will not use the same two drugs which were used in the first round. Instead they will use three different drugs, administered over a five day period. We don't know yet if that means twenty-four hours a day, as was the case with the first round of chemo. Of course we wanted better news, but we also knew that this was a possibility. We have already learned that this will be a long, hard fight.



Jan will require another bone marrow biopsy about a week after this next round of chemo is concluded. The rashes that I mentioned in an earlier report continue to spread throughout her arms, legs, and torso. The doctors believe that if may be medication related, or a condition called petechiae, which are actually little spots of bleeding under the skin, usually related to low platelets. A dramatic reduction in blood platelets is a side effect of chemo. Jan has already received two units of platelets, as well as four units of blood. She is scheduled to receive another unit of platelets today. This may be more information than you care to hear, but we have several nurses in the family who appreciate these details. We continue to have confidence in our doctors, and we plan to follow their recommendations to the letter.

Not all of the news has been disappointing. This morning we were told that the results of the breast ultrasound were negative. The lesion appears to be a cyst, which should be monitored, but does not require any immediate attention. So now we can concentrate on the task at hand............pouncing on leukemia.

Monday - November 5th.

Today has been a day very much like the past two. A day of anxiety, apprehension, and anticipation as we wait for the results of the marrow biopsy. In addition to that, we just learned that Jan's latest mammogram needed some follow-up, so the doctors decided today would be a good day to run a breast ultrasound. So, adding anxiety to anxiety, Jan's appetite continues to be poor. There also seems to be a new rash almost daily. She has rashes on her legs, arms, and neck. The doctors keep a watchful eye, but so far, associate it with her low platelet count and reactions to all the antibiotics. After nearly three weeks, the chemo treatment has been the easiest aspect to deal with. Much more difficult has been trying to manage the stress, anxiety, depression, diarrhea, rashes, chest pains, and loss of appetite. We are just trying to handle things one day at a time, and this day is coming to a close. Tomorrow is another day.

Saturday - November 3rd.

Jan had her third bone marrow biopsy yesterday. This one is causing more pain and discomfort than the other two. She also had the two needles in her port (which has been sutured into her upper chest) replaced. This procedure must be done each week. It was quite painful when it was done the last time. Yesterday they offered to use a topical anesthetic first, and that ended up being a big improvement. Her chest pains have diminished, only to be replaced by the aches and pains associated with the two procedures outlined above. She is still taking four antibiotics, two by mouth, and two by I.V. Her white count remains near zero, so special care must still be taken. Her food is specially prepared and washed, doctors and nurses must sanitize their hands when entering and leaving her room, and she must still wear a face mask whenever she leaves her room. Her appetite still has not returned, but she is eating some, in small portions. She spent a good part of the day sleeping while I diverted my attention for a few hours by going to the USF game. While I was gone she managed to spill her Pepsi into her side table drawer and spent thirty minutes cleaning up the mess. I told her they have people here to handle that, but she said if she made the mess, she should be the one who has to clean it up (as long as it wasn't pee or poop). Those are her words, not mine. More tomorrow. Don't forget to set your clocks back one hour tonight.

My Brother Pack & Sister Patti's Creations

These are pieces of artwork created by my brother, Pack, usually at the expense of members of our family.

Thursday - November 1st.

Jan had a much better day today. The diarrhea and cramping continued to improve, and the chest pains were slightly less painful. She was taken for her next diagnostic test............a high resolution Cat-Scan to try and locate the cause of the chest pain. No results yet. Her temperature fluctuates from normal to just below 100 most of the day. This is pretty common at this juncture of the treatment. She is scheduled for her post-chemo bone marrow biopsy at 10:00 A.M. tomorrow (Friday) morning. This is an important test to determine just how successful the first round of chemo was. We may not get the results until Monday, so it will probably be a long weekend.

Nurse Jan

Check out Jan sporting her new scrubs, and new hairdo. Today is starting out better than yesterday, partially due to the medication issued for the diarrhea and stomach cramps. The chest pain persists and the doctors are running out of diagnostic tests to run. Since an MRI had not yet been ordered, the doctors decided to order one of those. So that will be scheduled in the next day or two. Thank you to everyone for your cards, emails, blog comments, well wishes, and prayers.

Wednesday October 31 - Halloween

Wednesday was not a particularly good day. The chest pains remain a mystery. X-rays, Cat-scan, EKG, Ultrasound............all negative. Treatment right now is pain medication. Four straight days of diarrhea, and associated cramping, have also added some distress. Hospital protocol insists that medication for this can not be given until three consecutive days of stool sampling has been concluded. When admitted to the hospital, check your modesty at the door. Those tests were concluded early this morning (Thursday), and medication has now been given. Add in some nausea and a weak appetite, and you have a very forgetful day. In addition, some of Jan's lab numbers were a bit low (hemoglobin), so two more units of blood were administered. We hope to give a better report later today.

On a lighter note, Jan had her phase-2 haircut. She's having her hair cut in stages to ease the transition. Leslie, from the Moffitt beauty salon, came up to Jan's room with scissors and shears in hand. A post-haircut photo will be added later today.