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!


Jenny Lou said...

Hi John,

It was great to catch up with you on your blog. Tom went through some beginning rituxin problems, but then it got better with each infusion. If you get nauseus from the chemo, there is a 3 day anti-nausea infusion they can give you. It really helped Tom. His biggest problem is he is allergic to ALL analgesics so only benadryl before treatments. They tried steroids, but he swelled up like a balloon. Take sleep when you can get it, preferably while being infused. One last important thing--don't eat any favorite foods while being infused with chemo. If you get sick, you will never want them again. To this day when Tom looks at a "wrap", it makes him sick. Called "chemo brain". Great to hear from you--hope each day gets better--thinking of your family and hope your bro is OK. A lot going on for you. Thank God you have your unbelievable wife.

DavidE said...

John - you and your family remain in my prayers. I hope this comment finds you sound asleep after last night!

Anonymous said...

John: Though we spoke to Cheryl last night, it was good to read your blog, and get all the details. We continue to pray for all to go well for you (and for Cindy). We will be checking on you again before too many days go by. God bless you all. Paula & Earl

David Arenson said...


If you start to grow round ears and a tail, contact your doctor ASAP! Seriously, though, your Rituxan infusions should get easier from here on out.

I know what you mean about the Benadryl. It lowers my IQ by about half and usually causes me to nap through the rest of the infusion.

All the best to you and yours,


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