Put the Horse Back in the Stable

This will be a relatively short post – well, short for me. Haven’t been many of those in the last 108 posts! I had my blood drawn in preparation for next Monday’s oncology appointment. I have two nice black and blue marks in the crook of my arm as he had trouble hitting a vein. He dug around a lot. I may recommend him to my son-in-law, the oil driller. I told him to use the port in my chest and he said they don’t like to if they don’t have to because there is more danger of introducing bacteria and causing an infection. So instead he just kept wiggling the needle around inside and then moved it over a couple inches and wiggled some more until he finally got it. I hope when I am out and about somebody doesn’t look at my track marks and stop me and ask where they can score.

I waited for my results and prayers were answered. They were very good! My levels have been climbing fairly rapidly since December, but in the last five weeks they barely moved at all and a few even got better. White count jumped only 500 (.5). Percent of lymphocytes dropped to 83.1%, down from 84.6% last month (normal is 19% - 48%). Absolute Lymphocytes only climbed 100 (.1), which is negligible. Lymphocytes are what were causing me the most concern. Granulocytes are still low, but have climbed .4 and are almost up to normal. Platelets climbed to 128, not far from low normal. I do wonder if the platelets rushed to the crook of my arm to stop the bleeding from his first exploratory dig. I don’t know if it works that way or not. Red cells were up to normal and everything else on the WBC was in the normal range! This is a crazy disease, but I’ll take these results for sure. I won’t have the results of my IgG level for a few days, but if they stayed up, I will be able to skip my IVIg infusion next Monday. That would be icing on the cake!

Just like when the counts are moving rapidly in the wrong direction, we can’t put much stock in one test, but rather look at the overall trend. However, if this trend continues and I remain stable for the next couple of tests, this intermission just might last a while longer and we can return chemotherapy to the back burner. Putting stock in this can’t be any worse than what our 401k stocks have done in the last two years.

This happened a little over a year ago when things had been progressing and then suddenly stabilized. That lasted for about ten months or so. I’ll take it again.

I need to order some more hay. I could be bedding down in the stable for quite some time and I need to be prepared. If nothing else, I can always hide under it if the swine flu invades our area. Pigs don’t eat hay, do they?

Round Two of Chemo

Sorry I am a little late in posting this update but I have been spending a lot of time (too much time) on a great new site for CLL survivors and caregivers, www.cllforum.com This site was started by a group of folks who are also on the ACOR site. This new site just serves a broader purpose and does not replace ACOR. This one is like a little community (growing fast) of friends to have FUN and share. Lots of different areas to post, even a fun game area.

Anyway, yesterday's chemo went fantastically well. When we got there they accessed my port (breast implant) and drew blood for testing. Then we waited for those results and then saw Dr. Netaji. He was so very pleased with the results. He asked me what I would hope my white count would be. I told him I would be happy with about 15,000 as they were 48,000 last time. He said they were 9,000! NORMAL RANGE! My lymphocytes had come down some, but were still at 80 percent. (I don't have the exact figures in front of me) and my platelets had dropped into the 70's. The steroids this week will bring the platelets and white count up temporarily. He was so pleased with the results of my "whimpy" choice of treatment (his words, remember he wanted the big guns drawn first), that he thinks maybe we will only do two more rounds after this instead of the planned four more. It was hard for me not to say, "I told you so." I wonder what my results would have been with my first choice of treatment? Oh well, I am pleased and I won't second guess that. Then he thinks we might do Rituxan maintenance every few months. I can handle that!

After talking with him, we moved to the infusion room to get comfy. I started off with two Tylenol and a bag of anti-nausea drugs, followed by a bag of Benadryl. After I was sufficiently loopy from the Benadryl, started the Rituxan (my little mouse parts). They started real slow because of the "shake and bake" reaction I had last time. At some point they added some steroids too, but I missed that while I was in la-la land. The Rituxan took several hours. When that was done, they added the Cytoxan, my chaser for the mouse coursing through my veins. (Getting harder and harder to pass up trash cans now and I really think I am beginning to get cravings for cheese :-o) We finished up about 3:30 or so and I had NO reactions of any kind. I even managed to watch a movie, "Hitch" on my new portable DVD player. Of course Cheryl drove home because I was still 'under the influence.' For supper, I added an insulin shot as my sugars were already off from the treatments, two Tylenol, two Benadryl, my four friendly Prednisone pills and the strong anti-nausea drug. This on top of the 8 other pills I normally take every day. They all did their job and had me surfing the web and joining my new cllforum most of the night. I did finally try to go to bed about 3 a.m. and napped on and off some. Cheryl commented that I was still staggering some last night. But officer, I only had just a few legal drugs in me. It must be that sneaky inner mouse.

Today was another good, wide-awake, slightly hyper day. Started my income taxes, but surfed the web and tried to fix my home network (didn't fix it). Still no reactions, and now none expected. Got the full 80 mg of Prednisone today and am now wide-awake typing away. Even two Benadryl tablets aren't winning the battle with Prednisone. I will be taking the Prednisone pills for five days, the strong anti-nausea drug regularly for four days, and then only when feeling nauseas. I am still planning to go to work tomorrow, so hopefully I will start to get slightly sleepy soon as I get up at 5:20 in the morning.

By the way, after that one day of hair coming out in little clumps a couple of weeks ago, it stopped -- until today. I think it is starting again. My sink was littered after only running my hands through it. They did say it would take about a month or so to start to lose it and it has been three and a half weeks, I think, since first treatment.

I go to see Dr. Netaji next Monday morning. Then, hopefully with his blessing, I will be heading out of town to Tyler, Texas, to help train our new course. If I can't make it, my work has a backup plan. There will be two of us training and they are having me drive my own car too so if I have to go back to the hotel early to lie down I can. I am so blessed to be working with the people I work with. They are a great bunch, sometimes a few are a little strange, but great. And hey, I like strange. I fit right in!

Well, now a little after 2 a.m. Central Standard time, so guess I will go lie on the couch and watch infomercials. Sometimes when I can't sleep in a hotel I put them on at low volume and I drift off to sleep. Hmm, maybe some CHEESE and crackers before I lie down. I could still get three hours of sleep. My feet are still doing a happy dance and God is in control!

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!

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.

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 implant...er, 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.

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.

Not The Christmas Present I Was Looking For

I saw my hematologist/oncologist today. I got the news I didn’t want to hear but what I was expecting after reviewing my blood work from last week. I will begin chemo treatments sometime after the first of the year. I have to get a referral from my primary care doctor and approval from my insurance company to see a surgeon to have a portacath put in. This is put into my chest underneath my skin so they can use that for the chemo without having to use the veins all the time. This device can stay in there for a year or more and in the months I am not doing chemo, it just has to be flushed out once a month with saline solution.

Dr. Netaji based his recommendation not only on the blood work that showed a doubling of the lymphocytes in six months, but also on my fatigue, night sweats (but doc! I only had one bad soaking one, one night!), and the fact that the CT scan I had last week showed major growth in all the lymph nodes in my neck, stomach and groin. Concerning my neck, which bothers me the most, the CT scan report says, “There is prominent general adenopathy in every major nodual chain of the neck.” The conclusion of the two page report says, “This patient has mild splenomegaly and widespread pathological lymphadenopathy…” Basically, spleen not too badly involved, but naughty swollen lymph nodes everywhere. Using a term I have heard, I guess this makes me a lymphomaniac.

I will get more blood work on January 4th, to make sure last week's hadn’t worsened for other reasons and then I will see Dr. Nataji on January 9th to set up my chemo schedule. I did ask him about using only Rituxan as I posted yesterday. He said we could do that if I really wanted, but he prefers to “hit it with the big guns” right from the beginning. He said he has one patient in a four year remission right now. As we talked I told him that I had read a lot. Basically he said I could read anything but you can’t believe everything you read. He said he was going to email me some articles on treatment. He agreed that if I really wanted, I could try the single agent Rituxan for a month. Obviously what he left unsaid was that when that didn’t work, we would go with his recommendation.

When I got home from work tonight, his email was waiting. There were two articles from the recent Hematology magazine. I had just read the one article on line this weekend! What that author said at the end of that article was one of the reasons I want to try the less toxic Rituxan by itself. Funny, same article and he is using it to convince me to go with the big guns and I am using it to convince him to go with something less toxic first. Obviously I have given it a lot of thought lately and especially this afternoon. Why not try it “for a month?” Rituxan is one ingredient of the triple combination he wants to do anyway. If it doesn’t work, fine, at least I gave it a shot, right?

I also told him I was a little concerned with my memory. He said that once you are over 50 you need to carry a little notebook around as he does. I said, "But doctor, I forgot that Cheryl had major surgery this year! I can't recall any of it and she made me work real hard and I finally remembered the attacks that led up to the surgery, but never could remember the surgery." He just stopped his notebook speech, thought for a minute, and then said, "I think you should see a Neurologist." (Probably was thinking psychiatrist, too.) I told him I already had an appointment for the 22nd of this month because of the pain in my legs (which, by the way, he didn't think is being caused by the swollen lymph nodes).

Well, that is about it for now. I started this blog to primarily keep my extended family and friends up-to-date and I really don’t know who is reading it. I have set it up so that anonymous comments can be added without having to actually sign in and join Blogger. I have had a couple of people at church, several from my ACOR list, and one person from work tell me they are reading it. But that is it. Do me a favor? Click on the "comments" at the end of today’s post; if you are not a member of Blogger, under “choose an identity” just click the “other” button then put in your name; or choose the “anonymous” button; type inside the text block, maybe type in your first name at the end of your comments so I can guess who left the comment; then hit “publish your comment.” That is all there is to it. If you really don’t want it here for the world to see, send me an email either to my work or at home to let me know you are reading this. (For home email first type jtw890 then type @aol.com – I broke that up so automatic scanners didn’t get my email and then send lots of junk) Thanks.

Trials keep You Strong,
Sorrows keep You Human,
Failures keeps You Humble,
Success keeps You Glowing,
But Only God keeps You Going!