Monday, January 30, 2006

Faith, Love, Hope and finally WIN

I want to share with you four words that have come to mean a great deal to me in the last couple of months: Faith, Love, Hope, Win.

Why so significant? On December 1st, I was feeling a little low emotionally because my latest blood work was indicating that treatment might not be far off. Because of all the good prognostic indicators from the tests at MD Anderson, I wasn’t expecting it to be that soon. I wasn’t depressed, but I was feeling low and didn’t like the feeling. I was at work and couldn’t concentrate as usual. I started surfing looking for inspiration. I really don’t remember how I got there, I wish I did, but I ended up on David E’s blog,

David is the 43 year-old fellow (just had a birthday) I have mentioned before that has prostate cancer that has gone into various bones in his body – left leg, hips, pelvis, etc. He was just diagnosed less than a year ago. I spent a couple of hours reading his entire blog. I read it from start in February to that current entry and was inspired by his determination, courage, faith, and honesty in pouring out his emotions in his fight. All his ups and downs, hopes and fears were right there and shared with all. He has even started a non-profit foundation to help fight Prostate Cancer called FLHW, which stands for Faith, Love, Hope, Win. What a fantastic motto! I must admit shedding a few tears as I read his story. I realized I had stumbled across something special written by a special guy, who, even in the midst of his own battle, was determined to help others along with himself. In less than a year, he has raised many thousands of dollars for prostate cancer research through golf tournaments and selling royal blue bracelets with “Faith, Love, Hope, Win” emblazoned on them. (I finally ordered some!)

When I finished, I guiltily realized: #1, how lucky I am, and #2, I needed to be doing some actual work as this was unfair to my employer. I went to my mailbox, pulled out the distribution and there was a training newsletter, “Creative Training Techniques,” November 2005, Volume 18, Number 11 issue. I began reading it from the front page, as usual. The first article was titled the "Seven Attitudes That Lead to Success and Happiness," by Bob Pike. At first I wasn't going to follow the directions in the beginning of the article, but decided to. The directions were to write down the results that you want from living your life." My answer to the question was that I wanted to have made a difference for the better in people's lives, I wanted to be a person my wife, children, and grandchildren could be proud of, and I wanted to arrive in heaven and hear, "well done!" This was quite a different answer from the most common answers Mr. Pike listed in his article. The second set of directions said to write down the traits and characteristics that you admire in other people. I thought of David and a couple of others when I wrote down: courageous, honest, sincere, full of faith, and concern for others. On the last page, I was agreeing with everything the author was saying. He listed the seven attitudes as patience, anticipation, confidence, expectations, humility, understanding and belief. He then defined each of these. When I got to the end of the article, I was absolutely blown away when he named the three core attitudes to achieve and develop the other seven attitudes listed. There they were: Faith, Hope, and Love! The only thing missing from what I had spent the morning contemplating was “Win.” He said, " activates confidence and belief. Hope activates anticipation and expectations. And love activates patience, humility and understanding."

I went back to David’s website and saw his definitions:

FAITH - A virtue that provides a secure belief in God and a trusting acceptance of God's will. Having unconditional love for God through Faith will provide the strength required to win this battle. Through this journey, one must maintain and nurture their faith in God.

LOVE -An unselfish, loyal and benevolent concern for the good of another. The emotional support from family and friends, neighbors and strangers that will strengthen one's will to fight this battle.

HOPE - An unwavering desire accompanied by confident expectation of its fulfillment. We hope for improved treatment and ultimately a cure.

WIN - The cure for advanced prostate cancer.
(And, I might add, CLL/SLL - John)

I truly feel that David’s blog, followed by that article in the training newsletter, came at the right time for me and God was using those to drive home the point that I could not spend the time feeling sorry for myself and that I needed to be concentrating on the truly important things. I need all seven of the attitudes listed in Mr. Pike’s article while I fight this cancer battle in my body. But, I can't display those seven characteristics and neither can I fight nor win the battle without faith, love, and hope as the core elements. During my lifetime, I have often been amazed how we touch people in completely unexpected ways and David touched and encouraged me!

Since that 1st day of December, three of those words, FAITH, LOVE, HOPE, have continued to surface. When we took the decorations off our Christmas tree a few weeks ago, I stared at a decoration I held in my hands. It was three silver solid hearts connected side by side and one word was written on each heart. Those words were: FAITH, LOVE, HOPE!!! Cheryl saw my look and knew I was startled. I asked her were we had gotten that ornament. She told me I had bought it to commemorate our 37th wedding anniversary on December 23, 2004! A few months before my diagnosis. (Remember, I have a really bad memory now.)

In preparation for writing this post, I went all the way back through David’s blog again. There I discovered another connection I had missed the first time. His wedding anniversary is the same as my birthday. I was going to copy and paste every mention of Faith, Love, and Hope from his blog. However, when I did that, this became over 6 pages long in Microsoft Word, much longer than any of my other posts. Instead, I am choosing to close with a copy of a post from David’s blog on January 6th of this year. It explains how he came up with the title for his organization. By the way, it was after reading David's blog the first time that I decided to start my own blog. (Thank you Lord for bringing people into our lives at just the right time that we need them.)

More than words…... (By David E.)
When I came up with the name "Faith-Love-Hope-Win" it was both something that just popped into my head and something that I considered carefully. As I remember it, I was driving to work, in traffic, on the highway. A homily at Mass in the days preceding had included references to "Faith, Hope and Love". The passage might have been this one: 1 Thessalonians 1:3 We continually remember before our God and Father your work produced by faith, your labor prompted by love, and your endurance inspired by hope in our Lord Jesus Christ. Whether this is the exact passage or not, my point is, a biblical passage was the inspiration, the order of the words however, were not random.

To me, faith is first and foremost. In addition to faith in God or faith solely from a religious perspective, it includes faith in your doctors, medicine, family, friends neighbors, etc. Faith that even in the midst of being diagnosed with this terrible disease, something good will come of it. As I pondered faith, I quickly realized that faith alone will not accomplish the goal ahead but it is the foundation which will enable us to beat this disease - to Win.

In my mind, Love had to come next - the love for one's spouse, children, God, family, friends etc. It is an emotion we think about a lot but say to each other far too infrequently. In my life for example, I love my brother in law. My wife aside, he is one of the people I am closest too. He is truly one of my dearest friends. I have never said to him "I love you". I realize that there are many other people in my life that I love, but I also don’t tell them nearly enough, or at all. The battle I wage cannot be successful without them and their love.

Finally, there is hope. Hope, without it, we as humans would struggle to survive. Placing the cancer fight aside, Hope is what gets us up in the morning and Hope is what allows us to sleep well at night. Hope for a cure, hope for surviving another day, another week, another year and beyond. There are times during this journey that Mary and I have struggled to keep hope alive. This struggle has been one of the most difficult moments of our lives. Fortunately, we have always managed to find the inspiration, spirit, faith and love to keep the hope alive.

So if you ever wondered about the creation of FLHW, it was not just a random grouping of words, but the foundation of our mission and our journey.

"Now faith is being sure of what we hope for and certain of what we do not see." Bible, Hebrews 11:1

Sunday, January 29, 2006

Off Steroids

Well, it is Sunday evening and I took the last steroids last night - yea! I am glad because they were beginning to make me a little grumpy yesterday and today. Emotions are right on the surface. Today felt strange, somewhat surreal and like I was under a heavy weight.

I am a deacon in our church and I was scheduled to give the morning prayer for the pastor and the sermon. Just previous to the sermon, we had a guest, Johnny Ray (I can't remember his last name) who sang three special songs that touched me to my soul. The second song was how Jesus carries our burdens and our heavy load for us and the third was how we can run to Him when we need Him. Johnny Ray told us before he began to sing that he was not going to sing that second song but God impressed upon him that he must, because there were people present that needed to hear it. There is no way I can describe how beautiful those songs are here, but I got very emotional as did several others. The Jones' family was sitting across the aisle and many were in tears, our friends, Frank and Sylvia McDonald, sat in front of me (I was on the second pew) and she was crying. Sylvia reached behind and took my hand and then I started. When the songs were over, it was my turn to pray. I did everything I could to keep my composure. When I came down the stairs after praying, I felt afraid I might trip and fall and I held onto the lectern -- felt like an old man. However, I was so grateful for the message in song that was given to us.

After the service it was time to teach my Bible study class. I felt like I was in a fog. My wife and daughter said it went fine and I only got rambling at the end. Cindy said she could tell I was trying really hard to be clear. I don't remember much.

I came home from church and went to bed for a few hours. Yea, sleep. Later in the afternoon we went out to eat at the Cracker Barrel - comfort food. It was good. I was feeling some better, but still a little strange. Later in the evening, I needed to go to the gas station to get gas for Cheryl's car, and to the grocery store for a few things for Mom and us. My grumpiness came out again. Cindy was over at the house and she said she would go with me. Well, like a jerk, I interpreted that as they didn't trust me to go out by myself. I told them I didn't want to be treated like an invalid and I was perfectly capable of going alone. Hmmm. Seems she just needed a few things too. Sigh. She went with me and my grumpiness passed. Sure hope it doesn't stick around very long. I don't like that. It is not fair to Cheryl and those that are only trying to help.

My son-in-law, Marc, is out of the hospital. They gave him some steroids (don't like that word) in his shoulder and that has eased his pain. However, he was also told that two of the vertebrates in his neck/back are collapsed with no cushion or fluids to protect the nerves. He was told not to do anymore race car driving (which he loves), no swimming or diving, and nothing that might cause injury. The doctor said a whiplash could leave him a paraplegic. WOW! The doctor said the rest of his spine was that of a 70 year old man. He will need neck/back surgery in the future. The goal is to get him medical insurance and get through a year so that pre-existing conditions will be covered. The bill for just the ER and tests, not counting the rest of the hospital stay and doctors, was well over $10,000! Sheesh.

My oldest brother is out of the hospital too. They are still pretty convinced he had/has a viral infection causing the fluid build up around his heart. The only thing they are waiting to rule out is Lyme disease. He sounds good and is glad to be home. My youngest brother flew back to NY and made it safely also.

Well, it is midnight and I am going to work tomorrow. I should be really tired right now, but I am not. Maybe it takes time for all the Prednisone to get out of my system. Guess I will try a Bendadryl again. (The times shown at the end of the blog entries are when I first start to compose the entry and that is Pacific time -- two hours earlier than here. Just didn't want you to think I was lying about the time and then you get grumpy, too. HA!)

Oh, by the way, I was sitting watching TV last night and just ran my hand up through my hair on the side of my head (the only place I still have it) and came up with lots of strands. Then I tugged gently and came up with many more. That's not supposed to happen for a few more weeks. I may be shaving it off sooner than I expected. I think it will look funny. I may even post a picture here when it happens. Also, NO NAUSEA! And, I didn't take any nausea medication today, at all. Thank you Lord!

Friday, January 27, 2006

Sleep? I Don't Need No Stinkin' Sleep!

Wow, so this is what it feels like to be on speed? Who wants this? 55 minutes sleep Tuesday night, 4 hours of forced sleep with Benadryl Wednesday night and an hour and a half tonight. I am taking 40 mg of Prednisone every 12 hours. My last dose is scheduled for about 8 p.m. Saturday night. I teach my adult Sunday Bible Study class at 11 a.m. Sunday morning. Sure hope I don't crash and burn in the middle of teaching. My class is so great at carrying on discussion of the day's material that they could keep going as long as I managed to ask a question in the beginning. :)

Thought I would give a quick update to our continuing soap opera. My youngest brother, Bill, is the Broadway actor with about eight Broadway shows and many off-Broadway shows to his credit and the one who has been on a couple of soap operas and various TV shows. I never expected I would be in a real life soap opera. (By the way, his stage name is William Ryall and if you would like to read about his career and see pictures of him, along with various other stars, his website is at

Now for the latest installment of, "As the Stomach Turns."

Tonight boys and girls, our hero, John, received a call from his oldest daughter, Cheri, to see if she could bring the kids over to our house as she had to take her husband, Marc to the Emergency Room at Round Rock, Hospital. Since it was almost 10 and the kids were asleep, I told her I would come over there and watch them. Marc's left arm started hurting yesterday and by 3 in the afternoon, he had to leave work. He soaked in a tub of hot water for hours, but it just kept getting worse. By tonight it was paining so bad it was bringing tears to his eyes and he could not lift or even move his arm. Even though he doesn't have health insurance through is work, she said she had to take him. And she did. Unfortunately they decided not to add him to her work policy because it was going to cost $400 dollars a month. (Ain't health care grand?)

When our hero, John, arrived at their home, Marc was sitting out on the porch, obviously in great pain, and ready to go. I figured I would be there a couple of hours. Cheri called about 3:30 a.m. and said Marc was being admitted. So far he has had x-rays, EKG, Blood tests, Sugar glucose test, MRI and a CT Scan!! Remember, no insurance. His blood sugar was high, his blood pressure was very high, his EKG was abnormal and the doctor first said they suspected a stroke. Thus the brain MRI. Just like our hero, John, last month, they did find a brain, but no evidence of stroke. Thank you again, Lord! Then they did the CT scan of his shoulder and upper back. Cheri can't remember all the technical details, but it did indicate compression of something and she thought they said nerves were being compressed. A neurologist is being called in. His temperature was actually low, but he was sweating. Because various vital signs are off, they admitted him to room 231 (I think - remember, your hero is Sleepless in Seattle, er Round Rock, Texas!) She came back to the house about 5 a.m. so she could be there to get the kids off to school. She looked exhausted. For a fleeting moment our hero thought about offering her this cool drug called Prednisone as a pick me up. However, this soap opera script does not include the hero being carted off to jail. And this script doesn't need any more revisions. She will head back over to the hospital after the kids leave for school.

(Scene switch. Slowly pan into hospital room in upstate NY, where our hero's older brother is lying in a bed with a tube sticking out of his chest.) Jim had heart surgery Wednesday morning. The fluid continued to build around his heart and they had to relieve the pressure before it smothered his heart. They drained about 3 cups of fluid from the lining of his heart and the tube is still in him and draining. They also removed several swollen lymph nodes in the area for biopsy. When Jim mentioned that his brother, our hero, was battling swollen lymph nodes throughout his body, the doctor said maybe his was swelled in sympathy. Now that would be brotherly love gone too far to the extreme. But remember, this is a soap opera and you know how some of those medical scripts get really silly. (not to mention script writers on steroids) Anyway, back to our story. So far they have ruled out a lot of nasty diseases and other things. Cultures aren't showing much. They are moving more and more to a diagnosis of a viral infection. That could be tough to cure, I think. I talked to him for about a half hour on the phone Thursday morning and he sounded great. Of course he would like to get out of there and go home. He and his family are strong Christians too. His wife, Barb, seems to be holding up even though she has health problems of her own. They have five kids and so many grandchildren that I have lost count. Barb was a registered nurse by profession.

(Scene switch back to Texas) Cindy is doing OK. Still not up to par and still running slight fever. Seems to be an ear infection. Jonathan, her son, has also been out of school for two days as he has been running a fever. Of course they are avoiding me like the plague. When they got out of my bed from sleeping here the other night after her ER adventure, she said she didn't have time to strip the sheets, but she did spray the bed down with Lysol just in case I didn't change them. HA! She has placed hand sanitizers around our house and handwash is the order for everyone. Again, I thank the Lord that her fever doesn't seem to be connected with her heart surgery, other than her general weakened condition because of it.

(Scene switch to Funeral Home visitation) Our reluctant hero of this soap opera visited with Gene Jones for a short time Thursday evening at visitation time. She seems to be holding up absolutely wonderfully. She is such a sweet lady. Loving family and many, many Christian friends surround her. She has had a steady stream to her home of folks bringing food and love and support. Jimmy and Gene have both been very strong Christians and a great witness in their community. Jimmy was always testifying to his faith even during this last hospital visit. He didn't say that much that often in our class, but when he did it was always great and often with a sense of humor and impishness. He had a great love for the Lord and all people in general. He was the oldest member of our class and died at a young 84. (Our class is supposed to be over 50 to 65, I think, but we actually range from 32 up to Jimmy's age. I don't know who is our oldest member now, but I think somewhere in their 70s, maybe. Most, but not all of us are in our late 50s and 60s.) Jimmy's funeral is at 10 this morning and Cheryl and I will be attending.

(Last scene switch and slight flashback to a couple of days ago) After only 55 minutes of sleep on Tuesday night, our hero decided it might not be a good idea to go to work because he figured he would give out during the day. He didn't, he hasn't. His baby brother wouldn't let him drive his own car that day because he figured a crash was coming, both figuratively and literally. Neither happened. So, after getting a whole 4 hours on Wednesday night, he woke up at 4 a.m., very wide awake, and decide to go to work. This was much appreciated by his loving family who had put up with a couple of days of non-stop, hyper talking, singing, trying to tell jokes that were only funny to him, etc. Not much got accomplished at work, but he was there. First few hours were spent retelling his sad tale of surgery and chemo. Would have been nice if everyone had shown up at once and he could have told it once. But we have staggered hours and if people asked, he didn't want to say, "Come to the classroom at 10 o'clock and I'll brief everyone." HA! The rest of the day was mostly spent answering legitimate emails and cleaning out many spam emails as the spam filters had been off for a week. Really strange because our hero never received even one spam in two years even though other's did, then this last year they started flooding in. Mostly to buy cheap drugs, grow hair and other body parts. Who squealed?

To be serious, I am so very grateful to how I am handling this chemo. Monday was very rough, but in the scheme of things that was short and very bearable. My greatest fear, severe nausea has not been realized in the least. The strong anti-nausea drugs I am on (which also make me hyper) are working wonderfully! I will take being awake and hyper over the nausea any time! The treatment so far has been going much more smoothly than I had imagined it would. I guess I should have had more faith because I know many, many people are praying for me and PRAYER WORKS! I am so grateful that our Lord can never become overwhelmed with intercessory prayers being offered, because many have been sent on behalf of my family and friends this last week or two. Many prayers of thanksgiving have been among those prayers, not just requests. I realize I can expect to hit a low next week sometime, but that should only be extreme fatigue.

Hmmm, Sleep? Yes, I do need some stinkin' sleep.

Again, thank you to each of you for all of your support. I have received many individual emails and comments posted on this Blog. I appreciate each and every one of you!

Wednesday, January 25, 2006

My Inner Mouse

Sorry I didn't get yesterday's treatment posted, but it was a little rough. When I first got there, they inserted the needle into the port-a-cath and drew blood. The needle didn't hurt too bad going in but I am still bruised and sore from the surgery to put the line in. My blood work results weren't too different from last Wednesday, as I wouldn't expect them to be, however, I was not pleased that my platelets had dropped to 83.

Next I was taken into the infusion room, a large "L" shaped room divided into little pods of four reclining infusion chairs and two comfortable easy chairs for family members who may have come with the patient. I couldn't see around the "L," but I counted 20 chairs in five pods that I could see. Each pod also had a TV with video/DVD player. Because I was starting early, I think I was the first one in the room, but later in the day, just about every chair was filled. How sad.

First a very nice, very young nurse re-explained what they were going to be doing and what I could expect. I think one nurse was in charge of each pod as she was there all day, except for lunch. Then she gave me two Tylenol and then infused me with Benadryl through the IV. She sat and talked with me while the Benadryl made me loopier and loopier. I guess when she could tell my tongue was as thick as shag carpet and I was no longer making sense, and the Bendadryl bag was empty, it was time to start the Rituxan (made from mouse proteins). The Rituxan bag (a very large bag) started dripping very slowly along with a bag of Saline that was dripping faster. Every half-hour the dose was increased. Besides breakfast at home, I also drank a large cup of coffee, a V8 juice, and had bottled water there at my chair. The room was quite chilly and I asked my very young, very nice nurse how I was supposed to tell my shivering from cold to the chills that might be a reaction. She said I would know because the shivering will be quite strong. Within a half hour Cheryl covered me with a blanket as I reclined for the first of many short naps throughout the day from the Benadryl. Within an hour or so I had two blankets on me. About 11:30 or so my ears starting itching, but I didn't think too much of it. I told Cheryl I thought my inner mouse was trying to get out. Of course we both laughed pretty hard. She out of pity, I because of being drugged. About that time I had to take my half-hour trip to the restroom--remember I had been drinking a lot plus all the IV stuff coursing through me. I know it was a half hour because I timed it for right after each increase of the drip. This time I got in the restroom and it seemed very cold in there and I started shivering very hard. (I will spare you any further details of that trip.) I had also noticed my throat getting sore like from post nasal drip. I thought, great, now I am getting a cold. I had no sooner gotten back to my chair than I sneezed and my nose stuffed up to where I couldn't breath. My very nice, and very young nurse noticed this and came over and asked me what was going on. She stopped the mouse parts from flowing into me. Then my chest started to itch. She looked and it was red. She said this was all a reaction from the little mouse parts running through my veins and would go away in a little while because she stopped the infusion. She also chided me for not telling her about my itching ears. Well, none of these symptoms, other than the violent shaking in the restroom were what I had been warned about. Sigh. My very young, very nice nurse put in a call to Dr. Netaji for orders. About 45 minutes later, all symptoms were gone and they started up again a little slower than when it had been stopped. I think they increased it about every 15 minutes then. Cheryl walked down the street to Subway and got us a six-inch sub for lunch. She also brought back a large iced tea for me. My bathroom breaks were now coinciding with the 15-minute increase in IV drip. It wasn't long and the drip was really flowing. I was still chilly but not shaking violently. I think it was a little after three and we were done. All the way through they took my blood pressure and temperature every time they increased the dosage. Both were great, in fact my temp was always 97.something.

Cheryl drove home. I couldn't get warm in the car. She turned the heater up all the way, closed her vents and I had mine pointed right at me. I turned on the heated seats. My bottom got toasty but the rest of me was still cold. When we got home I laid on the couch, kept my jacket on and covered up with two blankets and pulled one of them up over my head. I just started shivering and couldn't stop. About 4:30 or so we took my temp and I had a fever. I took Tylenol as instructed. By 6:00 I was still shaking and my fever was up to 102.8. It stayed right around there and even though I was shivering, I kept managing to fall asleep. Sometime later in the evening, perhaps midnight, the shivering stopped, I felt warm and all the covers came off. I was still running fever, but not as high. About 3 a.m. I started sweating real bad and my fever broke. I went to bed.

At about 7:15 in the morning I got a call that a very dear man from the Sunday School class that I teach, Jimmy Jones, had passed away about an hour earlier. Apparently his heart gave out from complications of a surgery he had the past Thursday. I had visited him over the weekend in the hospital and he was quite weak then and the doctor said they were surprised he made it through the surgery. After the call, I got up out of bed and felt normal! I headed over to the hospital to be with his wife, Gene. Our wonderful pastor was there too. While we were there his family doctor came to pay his respects. What a wonderful Christian man. He said that he had been reading a book by Max Lucado last night and how Max wrote about death being a celebration of homecoming in heaven. I know Jimmy is celebrating! He spoke of it often in the past year as his health deteriorated. The man from the funeral home, whom Gene knew when he was a teenager but of course I can't remember his name, came just about the time I had to leave so I could make it to my second round of chemo on time. The pastor had prayer before I left and Gene, the pastor, the man from the funeral home, and I held hands in prayer at the foot of Jimmy's bed. Very comforting.

I got home, checked my blood sugar -- good as usual -- 87, ate a quick breakfast, and took my first 40 mg of Prednisone. We then headed for the clinic. My appointment was at 10 and I walked in about 10:03, whew! However we sat in the waiting room for a good 10 minutes so I guess I wasn't really that late. Today I was in a different location up in northern Austin. Much smaller, only 8 chairs I think. Again, a very nice, but slightly older nurse explained what they were going to be doing with the Cytoxan infusion (a true chemo-type drug). First they infused me with a bag of anti-nausea drug that would last about 12 hours. She said it saturates a gland in the brain so it doesn't recognize that the stomach is upset and wants to rid itself of poisonous stuff. She also said it would keep me awake tonight (along with the Prednisone). She didn't lie. That took about an hour to go into the IV. By the way, they left the tube sticking out of the port-a-cath overnight so they didn't have to restick me. How nice. Then my very nice, slightly older nurse started the Cytoxan. She also said she was going to start it slower than normal because it was my first time and because of yesterday's reactions. Praise the Lord, no reactions today at all! I even watched a movie on my grandson's portable DVD player. (No TV in this room). I don't remember for sure what time we left, but I think it was a little after one in the afternoon. She told me to take my anti-nausea pills for the next three days even if I didn't feel nauseated.

We then came home, waited for a bit, then took Cindy, Mom, brother Bill, Cheryl, picked up Jonathan from school and drove up to the Oasis restaurant, high on a hill overlooking beautiful Lake Travis. We had a wonderful lunch and enjoyed the beauty. It was a nice day, sunny and in the low 70's but we didn't eat out on the deck as Mom gets cold easily. The only thing really different that I have noticed today, other than being hyper, is that it is getting harder and harder to just pass by a trash can. Darn inner mouse!

Later in the evening it was time to take another 40 mg of Prednisone -- the steroid that can/does make me hyper. I have to take it with food and then I remembered I was supposed to be checking my blood sugar while on this. I figured one dose of the pills probably didn't affect it yet -- wrong. My sugar was at 239. Should be under 110 fasting. So, I finally found all the dosage directions, with Cheryl's help, and gave myself my very first insulin shot of nine units. I hesitated a little, but it didn't hurt again so next time will be no hesitation. I checked it two hours after eating and it was 221. Not sure what to do as my directions were to shoot up and then eat right away. Guess I will call tomorrow and ask.

Well, it is 2:29 a.m. local time right now and I am still not sleepy. I know I was back to being my very wordy self, but hey, it's my Blog, right?

For those of you who are still hanging with me, I will catch you up on Cindy's heart surgery. Cindy came home the next morning and they did not put the defibrillator in. Yea, I think! She was quite good on Friday, more worn out on Saturday, so-so on Sunday, and I have no idea on Monday, as I was so out of it. I know she was playing nurse to me, which she is VERY good at. She flew to NY and did a fantastic job taking care of my Dad shortly before he died. Today she seemed a little tired and I noticed when she was standing at the window at the restaurant looking at the view she was holding her heart like she did when it was erratic. I asked her if she was still having trouble, and she said yes, but not as much or as strong as before, but it felt like she had a weight on her chest. That didn't sound good to me. Later tonight she started running fever and it she said it felt like a burning sensation around her heart. She called her cardiologist and he had her go to the ER for an x-ray and EKG. My brother Bill drove her over. The EKG and x-rays seemed normal and the ER doctor thought she was beginning some type of other infection she may have picked up in the hospital. Her white blood count was a little low. He was sure the burning and heavy feeling is from scar tissue in her heart and part of the healing process. She will go see her cardiologist tomorrow. She and our grandson are spending the night with us, just to be on the safe side. Her husband is still in New Mexico in the oil fields.

My older brother, Jim, is now in the hospital in upstate NY. He went to the doctor having some difficulty catching his breath and the doctor immediately put him in the hospital. He has fluid in his lungs and around his heart. Not sure what is happening with that. They ran a bunch of tests today, but won't have the results until tomorrow. Cheryl is still holding on to her sanity -- I think! Please continue to keep us in your prayers. Also remember Gene Jones and the family as they go through this grieving time.

Well, after proofreading, rewriting, making it even longer, etc. it is now 3:20 a.m. local Texas time. Guess I will try and force myself to go to sleep. God Bless each of you!

Saturday, January 21, 2006

So Far, So Good

Cindy came through the heart surgery very, very well. The doctor came and talked to us before she got back to the room. He told us she tolerated it well and he did as much as he dared. He said the problems were in her right ventricle portion of her heart. Because her heart wasn't constantly misfiring, he had to keep giving doses of adrenaline so her heart would act up, then he would back off and zap the misfiring nerve. Then he would give more, back off and zap some more. He said he went as deep into the heart as he dared to go. He told us that there was a 70 to 80 percent chance that he got it all. She was to be kept in overnight and they would monitor her. About thirty minutes later she was brought back into the room - almost four hours from when they took her to surgery. She was fully awake, which surprised me. She said she was wide awake during most of the procedure and was able to watch most of it on a monitor which she requested to be moved to where she could watch. She said she was only unconscious when they threaded up into her heart and when they removed the probe. She is like me and found the whole thing very interesting. (Cheryl said, "No way, knock me out for the whole thing!")

By the time we left tonight she was feeling quite tired and she said her heart was feeling sore. Jonathan did not stay the night. It was mutually decided that it would be better if he came home with us. Poor kid, he had such mixed emotions about leaving. He was feeling guilty for leaving her there and cried. Cindy kept assuring him it was best for both of them. She felt she could rest better and he wouldn't be bored. He wanted to "take care" of her. Since her room was right outside the nurses station, he was comforted by the fact that they were very close by and could help her if she needed anything. We left about 6:30 and turned out the lights so she could get some sleep.

We came home to a great dinner already prepared by my brother. Yes, Mom and Bill arrived from NY yesterday with no problem. Mom tolerated the trip very, very well. She does amazingly well for being 91! She even went grocery shopping with Bill and drove a, as she called it, go-cart, around the store for the first time. (Motorized, sit down, shopping cart.) It sure is great to see both of them. Cindy drove my other daughter's, Cheri's minivan to the airport so there would be room for all of us, plus luggage and Mom's wheelchair and walker. Cheri had volunteered to drive to the airport and get them, since she works in downtown Austin and she was closer. However, I wanted to be able to go, so we just swapped Cindy's truck for Cheri's van. By Cindy driving, that saved Cheryl from having to drive in Austin traffic.

My surgery for the portacath also went very well. We had to be at the hospital at 5:30 a.m., as I was the first one scheduled. Surgery was at 7:30 and I was back in the day surgery room by 8:05. They used conscious sedation with an amnesia drug, so, unfortunately, I remember nothing of the procedure. In fact, I don't remember much of anything until I was over at the oncology appointment across the street at 10:00 (which we barely made on time). The surgeon also used a local anesthetic where he made the incision. That local lasted for about 12 hours, so it was fully numb most of the day. We went out to eat later that night with Mom and Bill, and I took a vicodin just before we left. The doc said to take one as soon as I felt the local begin to wear off. I was a little loopy at dinner -- but not so much as anyone could tell any difference from my normal loopy personality!

I was a little surprised that the cath is such a raised bump under my skin. I thought it would be flatter. In fact, you can see it through my shirt if I smooth my shirt down across my chest. Because I could start driving again today, I did discover that the seatbelt was a little irritating as it crossed over the incision. It is in place on my left side right below the collar bone. It is a little sore tonight, but not bad. All in all, a very easy time for both of us. If Cindy has a good night, we will bring her home tomorrow. Prayer does work! Thank you to so many who have prayed for us and who do so every day. Continue to pray that Cindy does well, does not need the defibrillator and that my chemo goes just as well next week.

Tuesday, January 17, 2006

Quick Update

Well, I learned to give myself an insulin shot today. Took a few minutes to build up the nerve, and then, due to nervous reflex, pulled it back out again as soon as I stuck myself. However, because it didn't hurt, I quickly reinjected myself and pumped in the practice saline solution. I got instructions on how often, how much, etc. I will be using injector pens which are quite neat. They contain enough insulin for many shots and all I do is put a new needle on the tip. I am giving my shot in my upper leg, didn't want to try the stomach yet. I am hoping this chemo isn't going to mess with the diabetes too much. Actually it is the 80 mg. a day of Prednisone that will do it.

Then after coming out of the clinic. Discovered I couldn't move the car. Seems a hose in the transmission broke on the way and all the fluid drained out. Actually before I went in, I knew something was wrong because I barely made it there. Anyway, my son-in-law, Marc, and his boss came and rescued me. We got the car to his shop and then they took me to get a rental car.

An hour or two later I got to meet the surgeon who will be doing my breast, portacath. I really, really liked him. He took lots of time to explain it, had a sample device and answered all my questions. Great bedside manner. Actually it will be placed up near my collar bone on the left side just under the skin and the tube will be threaded down from there, under the skin, into an artery. It can stay in for two or three years or even longer. I will be having the surgery first thing Thursday morning. I have to be at the hospital at 6 a.m. He said I should be able to make my oncology appointment across the street at 10 a.m. with no problem. Amazing. The only thing is that I can't drive for 24 hours because of the sedation. That means that Cheryl will have to drive us to the airport that afternoon to meet my brother and mother at the airport. She hates driving in Austin traffic. But, she will do fine.

Friday morning, my youngest daughter, Cindy, is going in for her second heart surgery. The day before Thanksgiving, they zapped nerves in the upper chambers of her heart to try to control the erradic beats. This time they will zap some nerves in the lower chambers of her heart and if that doesn't do the trick, will take her back in to insert a defibrillator. Similar to a pacemaker, except it shocks the heart when it starts going wacky. She will spend the night in the hospital and Jonathan, her 11 year old son plans to spend the night there also. She has told her husband he doesn't need to come home from the oil fields in New Mexico for this, but I won't be surprised if he does show up.

Very busy week! Next week my fun begins as they begin trying to cure, or at least contain my lymphomania. :-) Continue to keep all of us in your prayers, as I know you have been doing. We can tell! Thanks.

Wednesday, January 11, 2006

A Satisfactory Compromise

Well, I had a very interesting and long appointment with my oncologist yesterday. Cheryl and I met with him and the chemo infusion technician for almost two hours.

Bottom line, we will NOT be doing the treatment I wanted and we will NOT be doing the one he first wanted. Instead we came to a compromise that made sense for both of us. When I told him the treatment I wanted, Chlorambucil and Rituxan he reacted very strongly with a no, no, no, no. I was surprised at such a strong reaction. He said that treatment destroys your DNA and opens you up to all kinds of other cancers. I told him I had read and been told that by another patient too but as long as you kept it under 10 mg a day you mostly avoided those complications. He said he has read that also, but in the past he used that treatment a lot for many years and he had ruined too many people's health with it. He also said it would most likely ruin my chances for a transplant down the road. I said, "WHAT????" I thought I was too old for a bone marrow transplant. He said he was talking about an autologous stem cell transplant. I didn't even know he might consider that for me later. That is where they get me into a good remission, harvest my own stem cells, destroy my immune system and then reinfuse me with my own cells. My blood is passed through a machine that removes the stem cells (immature cells from which all blood cells develop), then returns the blood to the body. This procedure is called apheresis and usually takes 3 or 4 hours over one or more days to complete. The stem cells may be treated with drugs to kill any cancer cells and then frozen until they are transplanted back into me. He said if I went with my treatment we may hurt the DNA and ruin that option. (Near the end of the whole discussion he did say if I really did want to go with what I had suggested, he would, even though he was against it.)

I told him I did not want the Fludarabine which is part of what he wanted, because it also destroys the T cells which drops the CD4 count below 200 for two years or more and opens you to all the same opportunistic infections as an AIDS patient. Since my cancer is a B-cell cancer, I did not want to go that route until absolutely necessary. What good is remission if you are always getting sick with everything else? He saw my point. The first combination he came up with he had to reject when he remembered I was diabetic because it would throw my diabetes way, way out of control and I most probably would end up with severe neuropathy - I think it was Vincristine he couldn't add.

So to make a very long story just a little shorter, we came up with a modification, a compromise of both of our positions. One with which we were both satisfied. I will get a combination of Rituxan (the one made from mouse parts), Cytoxan, and heavy doses of Prednisone. This will still throw my diabetes for a loop, but not as much danger of neuropathy. I will probably have to go on insulin during the treatment cycles and will have to test my blood at least four times a day. I still have to get the port-a-cath put into my chest (my very own breast implant). He said I needed this now before my platelets got any lower and then we couldn't do the surgery. Once they get too low I could bleed from the regular IV.

So, next week I will see my primary care doctor on Monday for diabetes blood work, insulin prescription and training in how I am going to manage the diabetes with insulin. Monday afternoon a final dental appointment for awhile. Tuesday afternoon an office appointment with the surgeon. Scheduling nurse said I may have the surgery on Wed or Friday because I told her I couldn't do it on Thursday. Thursday morning Oncology appointment, base line blood work and final preparations. Thursday afternoon my mother (91 years old) and youngest brother Bill arrive from NY. (By the way, Bill is a great actor who just finished his latest show on Broadway - but that is another story.)

Monday Jan 23 - Is the big day, my first Rituxan infusion 8 to 15 hours long. They will first infuse me with Benadryl and give me Tylenol before starting. Must start slow and stop as I get reactions (chills, fever, low blood pressure, are common). They slowly increase the dosage every half hour. If they go too fast it could destroy my kidneys and I would end up on dialysis. This first infusion does a very quick massive cell kill and the body reacts. He said most reactions happen during hour 2 or 3. I have to drink a lot in order to flush the dead cells out as we go. According to them, I will have fever most of the night, but I have heard reports from many other patients that they didn't.

Tuesday Jan 24 - First Cytoxan infusion - will probably make me very nauseous. Also start the Prednisone which I will take twice a day for five days.

When we first started our talks, the doctor asked me if I could afford to take a couple of months off work - I told him no.

After discussing the treatment schedule I asked him about going to San Angelo for my work the week following treatment. He just stared at me. Finally he, very slowly, said, "Well, different people do react differently to chemo." Then, right in front of my wife, he said, "You know, your health is more important than your job." Then my wife shot me "THE LOOK." I swear it was a conspiracy. He said the lowest point normally comes a week to ten days after infusion and then the counts start climbing again out of the danger area. Just in time to start the whole thing over again - depending on blood counts -- every three to four weeks. They will take my blood once a week to check the counts. Bottom line, at least the first trip to San Angelo is probably out for me. I have a lot of trips for work scheduled in the next couple of months and they may all be out. My bosses have been great and they already have back-ups scheduled for me in case I can't go. My team lead is taking the bulk of the back-ups and with her regular schedule plus mine, she will only be home one week for the next three months. Whew!

Things they said will probably happen as a result of the treatment: Severe anemia, very low platelets, very low drop in white cells (which we want to get rid of the excess). They can counter that with transfusions of platelets and packed red cells and something else I forget. Very much at risk for bacterial infections. He told me that when I was tired I was to stay home and if I was at work and got tired I was to go home. I have to watch for any sign of infection and at the first sign of a cold sore or the beginning of shingles, or any fever over 100.5 after that first night, I was to call, day or night and speak to the doctor on call and start anti-viral meds right away.

The tech spent a long time talking about side affects and the importance of eating when I will not feel like eating. Small numerous snacks to help control nausea, medicines that can help, and to eat peanut butter and drink Glucerna (normally Ensure, but not for diabetic) for nutrition, even when I didn't want it. It was funny because he talked about hair loss and how it can be traumatic. I told him no problem. Then he said it was often more traumatic for the spouse as she saw hair on the pillow, in the shower, on the sink, etc. Again, told him no problem as we already went through that. As I was losing it on top we almost had to sweep the bed out in the morning. He thought that was funny. He talked about lots of other side effects, including being up all night when on the strong doses of Prednisone (he said for Cheryl to make a "honey-do" list because I may want to clean all night - ha!) and how it could affect my personality (how could I possibly become more loveable?) After all the different effects, he gave us a VERY thick manual titled "Home Care Guide Cancer -- How to Care for Family and Friends at Home." The book is thicker than any of our training manuals. Now that was sobering. Neither of us has even looked at it yet. He told us the importance of not being around sick people. He was concerned about where I work and asked if I trained patients. He was somewhat relieved that I didn't. I train the folks that deal with patients. He said the grand kids needed to have all their shots up to date, and they were not to come around me for 24 hours after any vaccine. Lots of hand washing for everyone was important. Starting on the 23 rd I have to switch to an electric razor. And a bunch of other stuff -- Cheryl took lots of notes. He also told us when either of us ran out of leave the Family and Medical Leave Act takes over, even for Cheryl if she has to stay home to help me. He painted a much darker picture than he needed to paint, I think. We shall see. Then I had to sign releases that I think gave them permission to kill me. When we got home, Cheryl went over her notes with me (while I could still remember) to make sure she got it all. We spent most of the evening on the phone talking to our kids then my Mom and all my brothers.

I am definitely not scared or even very nervous about it. In fact, I can just hear some of my fellow patients as they read this saying, "So?" Many of them have gone through numberous rounds of many different combinations and they are pros at it by now. However, for me it is starting to seem like a little bigger deal than I first thought, I guess because we are now moving from the theoretical to the reality of it all.

I am sitting in a hotel room in El Paso, TX, right now. Tomorrow I begin training a three day course I put together. I am looking forward to the training as it will keep my mind occupied and I will be doing something "normal."

I appreciate the understanding of everyone at work who will be, and have been, covering my duties for me. Before diagnosis last year, I had several hundred hours of both vacation and sick leave saved up. I have cut that by about a quarter with all my medical appointments this year, but I still have a couple hundred hours combined time saved. I got an email from my training director who told me not to worry about work, take care of what I needed to take care of, use up all my time I have coming and then we will go into the "sick leave pool" for extra days. He said we can also arrange work from home as I am feeling up to it. When I am not on the road training, the courses I develop are done on the computer. Counting my laptop, we have three at home. In fact, I may even get more done at home than at the office. There is a supervisor's quality assurance course I was supposed to have developed this past year and I haven't gotten very far. Didn't seem like I could concentrate on it very well. Now that I know the game plan and we are taking action, that relieves much of the uncertainty. Now if I can just get it done before "chemo brain" sets in. If not, could be an interesting course!

I really do not think I will have too rough of a time with this treatment, but then who knows? No matter whether I do or not, the support I have is fantastic. I have so many people praying for me all over the place that I feel very secure and at peace with it all.

Wednesday, January 04, 2006

Neurology and Blood Test Results

Neurology appointment went well this morning. He told me I had no sign of stroke or lesions or tumors in my brain (and yes, I do have a brain). I showed him an article about mental confusion and that it may possibly be as a result of a hormone-like reaction to CLL cells or an immune reaction by normal lymphocyte cells to the persistence of the CLL cells. He read it but told me he really did not know that much about lymphoma or leukemia. He indicated he thought the memory problems were just because of the stress overload from this disease. I truly don't feel that stressed, but who knows.

He then did the nerve test. Now that was interesting! The first part was hooking me up to electrodes at my feet and my leg and sending shocks up and down my leg and foot. Kept moving the electrodes around too. He told me to try to keep my leg as still as possible when the shocks came. Right! It really didn't hurt, just annoying. Some areas felt stronger and made me really jerk my leg or foot and others I was able not to move at all. He said he was checking for neuropathy damage from the diabetes and everything looked good.

The next test was much more uncomfortable at times. It consisted of sticking a needle into me at various places from feet all the way up to the top of my thigh. He would stick the needle in and then I was to flex the muscle that the needle went into. Lift toes, rotate foot, push down on knee, lift leg, etc. The one that hurt the most was in my calf. That was hurting before I even tightened the muscle. The needle was attached to a machine and I could hear a change in the sound whenever I flexed the involved muscle. I tried counting how many times I was stuck in both legs, but I lost track. I was in a cold sweat during this test and that was embarrassing because my feet and legs were sweating. When it was over and I got up, the back of my shirt was soaked.

Bottom line, he is pretty sure the pain in my legs comes from my lower back and the position I am sitting in or standing. The MRI showed several bulging discs, arthritis in the spine, but no specific pinched nerves. That doesn't rule out them being pinched some when I am sitting. He said the numbness on the top of my legs is definitely from pinched nerves at the top front of my legs. Problem is, what is pinching them? Sometimes people who wear jeans that are too tight have this problem when sitting. My legs are so skinny, my jeans are real loose. He said it is a real possibility that swollen lymph nodes are pinching the nerves. He said the true test of this will be if after chemo the lymph node swelling goes down and the numbness problem goes away.

I also got my blood test today and they gave me a copy. I won't be discussing it with Dr. Netaji until next Monday. However, it really wasn't what I was hoping for as most everything continued to go south. The odd thing is the red blood cells increased again, just like last time. In fact, they are really getting close to the lower edge of normal. That does explain why my fatigue is not as strong as it had been. Platelets dropped another 10K since about three weeks ago. Now down to 90. For those who understand I will post the numbers that are outside of normal First number will be this test, second number from three weeks ago and last numbers the normal range. Sorry about the spacing, but I can't figure out how to make tab spacing show up and regular spaces don't work either, so I am separating the numbers with //

WBC 37.1 // 32.8 // (4.0 - 11.0)
NEU# 2.2 // 2.2 // (3.0-7.0)
NEU% 5.9 // 6.6 // (40 - 74%)
LYM# 33.3 // 29.4 // (1.0 - 4.0)
LYM% 89.8 // 89.6 // (19.0-48.0%)
MONO# 0.9 // 0.6 // (0.1 - 0.6)
MONO% 2.4 // 1.7 // (3.0 - 11.0%)
BASO# 0.6 // 0.6 // (0.0 - 0.1)
RBC 4.42 // 4.33 // (4.70 - 6.10)
PLTS 90 // 100 // (130 - 400)

Dr. Netaji bases a lot of his decision to treat on the Lymphocyte # doubling time of six month or less and platelets being below 100. Lymphocyte # from his lab last June was 14.8 So, bottom line, I will more than likely begin chemo. I won't know for sure until next Monday. Of course I will post then and let you know.

By the way, I am now considering a third option. Combining Chlorambucil with Rituxan. Also this is a combination of pill and infusion. This is not a normal combination, but someone on ACOR as had great success with this combination. Apparently, if I am correct, he came up with this himself with input from Dr. Hamlin. But don't quote me on that one.

Thanks for reading and thanks for your prayers.