You Surprised Me, Doc

Wow, another two weeks and much has happened. I had my first IVIg infusion a week ago Monday. I tolerated it pretty well. We arrived a little before 8 a.m. and the infusion was started just about 9 a.m. We had to wait for the pharmacy to mix it and deliver it to the infusion room. I took two Tylenol tablets and was infused with premeds of Benadryl and a steroid (I forget which one). They watch you very closely for any reaction, particularly watching for the blood pressure to go too high. Well, of course I never do anything the expected way and my blood pressure dropped way too low -- twice, maybe three times but the one time it was 40 over 20 and the nurse didn't believe that one. I was reclining in the infusion lounger chair so they made me sit up. But eventually my pressure came up closer to normal and stayed there so they were able to slowly increase the infusion rate. I slept most of the time. I had the bag of immunoglobulin antibodies and was done and out of there by 2:30 in the afternoon. That evening I did have a bad headache and had a headache most of the week. That is a common side effect. It really must have done some good because Jimmy, our grandson who lives with us, was sick all week and our other grandson, Jonathan, my daughter, Cheri, and son-in-law, Marc, were all sick with very bad colds and I did not catch it! My next infusion is in December.

Then this past Monday, I had an appointment at MD Anderson in Houston with a CLL specialist, Dr. William Wierda. We drove down on Sunday afternoon, Veteran's Day, which was also Cheryl's birthday. (We all went out to dinner together after church to celebrate.)

I thought the appointment with Dr. Wierda was very productive. (This was my fourth time seeing him.) My local doc thinks I might need to start chemo again, but Dr. Wierda agrees with Cheryl and me and doesn't think it is quite time yet. He does agree we are moving in that direction, though. When discussing the reasons my doc thinks it might be time, we talked about my widespread swollen nodes in every region -- neck, chest, stomach, and groin. I told him they mostly measured 3 cm by CT scan up from 1 to 1.5 cm last January. He said most of the time they don't treat just because of swollen nodes until they are over 7 cm. I had not heard that before. He asked how low my platelets had gotten (only in the 80s this time) and Monday they were 102.

He said before we did any treatment he would want to rerun most of the prognostic tests, with the exception of finding out if I am mutated or not as that doesn't change. He said he particularly wanted to check to see if I picked up any new chromosomal deletions. He then said, "Of course your body didn't listen to all those good prognostic indicators the first time around. I remember giving you all good news and saying you probably wouldn't need treatment for a very long time." I asked him if he thought there were prognostic indicators that we don't know about since I had all the best ones and needed treatment so quickly. He said of course there are and we just haven't found them yet. He said that is the only thing that explains the odd cases like me and those folks that have poor indicators and yet go without treatment.

I did tell him my suspicions that I may have had this for up to ten years but there had not been a CBC done. He said he really doubted I had it that long because of how quickly I progressed after diagnosis.

Then he shocked and surprised me. He said that when it is time for the next treatment, he wants me to start the process of preparing for a stem cell transplant. He could tell I was surprised, but he said that didn't mean we would do it then. He explained it takes a very long time to find a donor and get things prepared and set up. He wants to get the process started and have me meet with a transplant doctor/team and make sure I am a good candidate. I asked about my age and he said it used to be they wouldn't do it over 50 or so, but by today's standard I am relatively young (62) - bless his little heart.

Since Monday I have thought about this quite a bit and to be honest, it is very scary. It is a rough procedure with a fairly high (in my opinion), mortality rate. Basically they destroy your bone marrow with heavy chemo and infuse the stem cells and hope they engraft and take over. Recovery time can be quite long. Now I do know some folks that are doing very well and had a relatively "easy" time (remember, I said relatively). In fact, I met one of those guys, Paul, in person Monday. But just today I was catching up on some blogs and there are folks that are a couple of years past transplant still dealing with lots of problems and graft vs. host disease. I also know of several who did not survive the process, including one dear lady, Phyl, whose journal is listed over on the right side, here. We also visited with another fellow while there, a former member of our church, who had a stem cell transplant and his sister was the donor. He was supposed to come home three months ago, but he is still dealing with major problems. He hopes to be home by Christmas. His transplant was in May.

Dr. Wierda said he was very glad to see I had started IVIg. I asked him about my level not being below 300 (low 400's) and if it really fit the criteria. He said absolutely. Anything below 700 with multiple infections indicated the need. He said to do them monthly, but have my doc keep checking the levels and once they hit 700 to space the treatments out to just maintain a level over 700.

He said again he would strongly recommend Fludarabine, Cyclophosphamide (Cytoxan), Rituxan (FCR) for my next chemo regime if I didn't participate in a clinical trial. In fact, the two trials he mentioned that I would qualify for are adding stuff to FCR. (One of the trials is a double blind study and some folks would only get a placebo added to the combination of chemo drugs.) I reiterated that I was hesitant to do FCR because of how Fludarabine depletes the T cells and leaves you vulnerable to infections. Since this is a B cell cancer, I did not like the risk. He then said slowly, "and how many infections have you had this year?" Umm, nine. He said the leukemia was depleting my immune system and causing me to get these infections. The cancer is still growing, crowding out the healthy bone marrow. FCR would deplete the T cells but they would start to come back in six months to a year and the main danger of infections would be past. (Now Dr. Hamblin has said several times that NOTHING will completely restore the immune system for those of us with CLL.) Also the VAST majority of folks with FCR are getting a five year remission and many are getting even longer remissions. For the first time, it started to make sense. He didn't say it again this time, but I knew he wished I had done FCR the first time. However, I don't regret using my choice of Cytoxan, Rituxan and Prednisone the first time as I have now gotten 16 months of a partial response. Not a bad intermission. Basically it is the same thing, just without Fludarabine.

The final surprise, instead of saying "see you in a year," which he has said the last two times, he said he would like to see me again in two months and then changed it to three months. I didn't ask, but I had the impression that he thought I might be real close to needing treatment by then. We'll see. But at least I will be getting through another holiday season without being on chemo.

And finally, report cards came out this week for Jimmy. He had 5 A's, one B and one C!!! The best report card ever. He didn't even show it to us, Cheryl found it in his school bag. We are so very, very proud of him and we all went out to dinner to celebrate. He chose the restaurant. Here he is at his last football game.

MD Anderson Visit and Current Chemo Round

Hello all. I am sitting in a hotel room in Houston, only a few blocks from MD Anderson. However this time I am here for my work all week. I arrived on Sunday and will leave Friday afternoon. Doing OK, but struggling just a little. I never sleep that well the first few nights in a hotel and combining that with the Prednisone steroid I am on...well, you know the story. At least I am staying awake so far in class, although I did feel myself getting frustrated today with some of the comments from some of the students in class. I always get more sensitive on the drugs.

We drove down here to MD Anderson last week Tuesday afternoon as I had lab scheduled for 8 a.m. on Wednesday morning. We took the hotel shuttle over Wednesday morning and arrived at the fast track lab about 7:20. They have moved it to the other end of floor six over to the left coming out of the elevator and their time starts at 7:00. I registered and was taken almost immediately. Well, my doc appointment wasn't until 2 but we had already checked out of the hotel, so we went down to the lobby to wait. We were by the fish tank area and Cheryl started on a puzzle and I read the paper and helped her some with the puzzle (I get too frustrated to work too long on them), watched the fish, and wandered around some. We got to meet Jenny Lou's husband for too short a time. Jenny Lou is a member of ACOR, both are on the CLL Forum and they live in Austin. We have been trying to figure out a time to go out for dinner for months now. May happen soon. He had just driven in from the airport and he didn't have very long before his appointment. He looked really good and said he was feeling great after such a rough time dealing with his CLL. He promised we would all get together soon in Austin. Then he headed upstairs and we did too, as soon as Cheryl finished putting the 500 piece puzzle together -- she is good at it. We checked in about 1:20 hoping we might get in early, especially since there were not many people in the waiting room at all! Wrong. We were called into the back about 2:45 and saw his nurse who checked all the paperwork and gave us a copy of the blood tests from the morning. I will post them below. They were terrific. Then we waited and waited. About 45 minutes later, his PA came in and interviewed me and asked about my treatment, why we had started and why I hadn't done FCR as recommended last year. She wanted to know how Dr. Wierda could help me now. She left and we waited at least another half hour for Dr. Wierda to come in. He asked me all the same questions. Even though my oncologist sends him copies of all his notes, he hasn't seen them. Luckily I had copies with me (that also showed him as cc at the bottom). At first he sounded like he was upset that I had even started treatment, but I showed him that we had followed all the signs to start that he had given me last year -- absolute lymph doubling of less than six months as shown by several consecutive tests, nodes continuing to grow, platelets below 100, etc. He then was OK with that. However he was very disappointed that I didn't do FCR and wanted to know why. I told him it was my choice as I wanted to start with something less toxic. I also said that Dr. Hamblin seemed to agreed with me even though he does believe in FCR for certain cases. I told him I knew many people were fighting lung infections, sinus infections and other infections after FCR even though they were in remission (primarily due to the Fludarabine component of FCR). He said people get them all the time anyway, especially sinus infections, without CLL. I also told him because I had mono many times I didn't want to risk hurting the T cells yet and having that cause problems. He poo-pooed that too as he said 90% of people carry the EBV virus. I told him I knew that, but the folks that had full-blown mono were more at risk, especially for transition to a much more aggressive form. He really didn't respond to that. He said that folks who do FCR as first time treatment have a much better chance of remission and much longer remission. I asked him about the fact that nothing has shown any advantage for long term survival. He said that is only because the expensive studies have not been done yet. He is convinced that FCR will show much better long term survival and even some "cures" once long term, "expensive" studies are started and completed. I mentioned how so many of the CLL experts even disagree on proper treatment in many cases and mentioned David Arenson (see his blog link over on the right) who had just completed a trip around the country consulting with many CLL experts who all had a different opinion for his treatment. He acknowledged there was often not a consensus and that he sometimes disagrees with his colleague, Dr. Keating. What can I say. He is totally sold on FCR (as is Dr. Keating). Anyway, he said since I have started down the path I chose, I needed to complete it. He suggested a bone marrow biopsy (BMB) in August. He also said I should consider a one month Campath mop up if the BMB indicated 30% or more of involvement and then another month after if needed. He did warn me that Campath is even more toxic than fludarabine. That really bothers me too. He wants me to come back before starting another full blown treatment to see what clinical trials might be going on then. He mentioned one that might start within a year with a drug I have not heard of and can't remember now. It starts with the letter O but that is all I can remember.

We ended up leaving Houston during rush hour and got home around 9:30 p.m. and then off to my local doctor and chemo the next morning.

All in all I am not sure what I got out of the Houston trip, other than an "I told you so" from Cheryl and another "I told you so" from my local doctor the next day. In fact my local doctor was concerned that I made it clear that it was my choice and not his not to do the FCR. He said he didn't want Dr Wierda to think he was some hick and wouldn't refer anyone else to him. SIGH. So all in all, I felt a little beat up. It will be much harder to follow my own path in the future.

Thursday's 8th round (and I hope last round for a long time) of chemo went fine. I did the benadryl by pill instead of infusion and thus avoided the very annoying restless leg syndrome. I also slept through most of it again. Then slept some more when I got home. And, amazingly, slept for 5 1/2 hours that night! I have never gotten more than one hour's sleep the first night before. Then the next night another six hours sleep!

I go for blood work again next week and see my local doc in a month. He is planning to do the bone marrow biopsy later in August and he really wants to do a PET Scan this time, too. He said it will tell him if the swollen nodes in my chest, stomach and groin are active or not. At least he wasn't thrilled with the Campath mop up approach either. I guess we will wait and see what the bone marrow biopsy says and I will do some more research, too.

Anyway, here are only the highlights from the blood test at MD Anderson as there were 48 separate things reported. I will post the things we usually look for and anything that was either high or low. Strangely, this report doesn't show what their normal range is. It only stated H for high or L for low.

White blood cell count 4.7
Red blood cell count 4.13 L
Hemoglobin 14.3
Hematocrit 40.1
Mean corpuscular HGB 34.6 H
Platelet count 126 L (but up from 81 two weeks ago)
Chloride serum 110 H
Glucose 184 H (that's my diabetes messed up and it was nearly 400 at one point today even after insulin, but that is the steroid effect.)
Eosinophil percent 5.0 H
Metamyelocyte percent 1.0 H
Anisocytosis Occasnl (red cells of unequal size)
Poikilocytosis Occasnl (red cells of abnormal shape)
Neutrophil absolute count 2.30 (first time in normal range in a long time)
Neutrophil percent 49.0
Lymphocyte absolute count 1.88
Lymphocyte percent 40.0
B2 Microglobulin, serum 1.6
Immunoglobulin IgG 465 L
Immunoglobulin IgA 70 L
Immunoglobulin IgM 21 L

As I said above, I am really pleased with this and feel like I have gotten a very good partial response. Even though it looks like a lot of red, most are only a very little off normal -- but then again, I am a little off normal myself, so I guess it fits well!

As usual, thank you so much for your support and especially your prayers.

That Was a Short Break!

Here I am in El Paso again. It is hot! 102 the last two days. But they say it is a "dry heat." Well, so is a campfire.

Monday, before I left to fly up here, I saw my Dr. again and had more blood work. I won't post that here other than my platelets came up some and my RBC went down some. Other than that, nothing much changed. However, after seeing him I now have two more chemo rounds scheduled. Since I am in El Paso all week, the next round will be next Monday. Then again on July 5th. I will also extend the Prednisone for an extra five days so I can decrease it slowly rather than the sudden stop.

How did I happen to agree to this? Well, as you know, he wants a better response but I have been happy with the good partial response. However, a couple of weeks ago he had ordered another CT scan of my chest, abdomen and groin. He left out the neck this time. At first I hesitated to do this because of the high dose of radiation that it takes to do this test -- equivalent to 400 chest X-rays! But, since my neck lymph nodes went down after the first chemo round, I thought this would show him I had a better response than what he thought. Well, I was wrong, sigh. Although all the nodes had decreased since before we started chemo, they only went down to half or some to 1/3 of the original size. There are several that are close to 2 cm x 3 cm. And I still have quite a few in the lungs. So, because of the fact that he said he was more pleased than he had been, that he didn't suggest FCR (the one I don't want to do yet), and the nodes that haven't gone away, I agreed to do two more rounds of what I have already had six rounds. He said he wants a more complete response. He will then do a bone marrow biopsy in August.

Well, the fact that we are doing more chemo made Cheryl happy because she really wants me in a remission. As my daughter, Cheri, said, "when Mom is happy, everybody is happy." I was absolutely fine with the decision in his office and on the drive back to work. But then some disappointment set in. It was nice not having to do chemo for awhile. At least I know I tolerate this well, so two more rounds won't be bad. I just know I will have a couple of more times with my steroid friends. More sleepless nights, more fatigue and more moodiness. Watch out!

Also, in Monday's mail I got a letter from Dr. Weirda's office at MD Anderson. He is the CLL expert I saw last year for my second opinion. They automatically made a follow up appointment for July 12th. I will have blood work there in the morning and then see him in the afternoon. That is good timing because I will get his opinion on what I should be doing now after these two extra rounds. However, I will still be on the Prednisone and that will throw the blood work off some. It will make some numbers look better and some worse.

I noticed on the CT Scan report when I was reading it here in the hotel, that as noted last time, I have coronary artery calcification. My oncologist never mentioned this and I don't know how significant this is. I will need to ask when I get back.

I will also be making an appointment with a dermatologist. Skin cancer is a danger with this leukemia, particularly after chemo. Although not as much danger as with FCR. I have a spot on my arm that has appeared in the last couple of weeks. When I asked him about it, he kind of pooh-poohed it before he looked at it. When he was examining me, he did look at it and said a dermatologist could cut it out. Since my dad had lots of skin cancers with this leukemia, I will definitely go.

My energy level has been on a roller coaster ride. Last Friday I felt great all day, including after driving to Ft. Hood after work to get Rx refills, a haircut and some grocery shopping. I thought, FINALLY. Then I slept a lot all weekend. Yesterday it was pretty good again and then today a little on the down side. Oh well, it should be pretty good just in time to start over on Monday. I came back to the hotel tonight and slept for three hours. Just went and ate and about to go back to bed for the night. I never sleep that well the first couple of nights in a hotel.

Pray that these next two rounds will give me a more complete response and I can knock those nasty cancer cells running all around my body into submission.

Last Chemo Treatment for Awhile???

Sorry for the delay in getting this posted. I should be feeling really happy that I am doing the sixth and supposedly last round of chemo. But, I am just feeling BLAHG! (A term David E. coined in his Blog - a combination of the words blog and blah.) Maybe I can blame it on the steroids, because that is how it does make me feel, very emotional. At least the grumpies haven't hit yet, just the 'downer' feelings.

The infusions went well again on Monday. Just some restless leg/foot syndrome where I had to keep wiggling my feet when I was awake. Fortunately I slept through most of it. I only got 30 minutes sleep from Monday afternoon until about 2 a.m. Wednesday. But I did sleep later on Wednesday morning and then went into work for a little while and I got about six or seven hours last night. I worked from home today, but plan to go in to the office tomorrow. I have taken no nausea medicine, other than what they gave me in the infusion through my port. That really, really is a blessing!

There is a slightly different plan this time with the Prednisone steroids. Every other time I took 80 mg for five days and then quit cold turkey. Well, last time I crashed pretty hard on Sunday afternoon and particularly on Monday. When I told my oncologist about that he changed the regime. I will take the 80 mg for four days and then reduce it every day after to 60 mg, then 40 mg, then 30 mg, then 20 mg, then 10 mg, then 5 mg. This should avoid the crash, but it does make it go for 10 days. I sure hope the moodiness decreases each day with it. I am supposed to teach a class next week and I can see me getting upset with participants, or, perhaps worse, crying if they don't answer a question correctly - HA! The week after that I fly out to El Paso to teach another week. But I will not return to El Paso the week following that one as I had expected.

I will have more blood work done early morning on the 22nd, just before heading to the airport. However, I am not sure how accurate that will be because I will again have just come of the steroids a few days before and that always skews the results. Then in June, I return to the doctor and he will do more blood work and we will figure out what to do from there. Again, he is not as happy with my results as I am. He thinks I only have a partial response. As I told him, I think his aim of treatment and my aim of treatment are different. I would rather have a good partial response than be in a deeper remission with the leukemia but keep getting sick with all kinds of infections and pneumonias like happens to many folks that have done the treatment he wants. As I said, that is something I want to hold in reserve when nothing else works. So far, no treatment has shown any advantage for survivability. So, I am focusing on quality. At any rate, if he pushes hard for that, I will go for a second opinion at MD Anderson. Since he did back off on the treatment talk this time, I have not made an appointment yet. We will see what the blood work looks like in June. At least it is nice knowing I don't have another treatment coming up in a couple of weeks. I usually start feeling better just in time to start the next round, even though I don't seem to come back up as far each time. But since I won't be infused again, I expect to just start feeling better and better.

Well, for those who understand, here are Monday's test results and I know MANY of my fellow CLLers would absolutely love to have these results. (Just wish my doctor loved them as much. Very strange.)

Results first, this labs normal range next - this labs normal range is quite different from the lab downtown that I use on the off-weeks. I also put in red anything low or high. There are only four of those and they are not bad at all.

WBC 4.4 (4.1-10.9)
LYM 2.4 (0.6 - 4.1) This is the absolute number - the important one
LYM 54.8% (10.0 - 58.5%) This is the one my doctor doesn't like
MID 0.3 & 6.8% (0.0-1.8) (0.1-24.0%)
GRAN 1.7 & 38.4% (2.0-7.8) (37.0-92.0%)
RBC 4.42 (4.20-6.30)
HGB 14.5 (12.0 - 18.0)
HCT 43.0% (37 - 51%)
MCV 97.3 (80.0 - 97.0)
MCH 32.8 (26.0 - 32.0)
MCHC 33.7 (31.0 - 36.0)
RDW 13.8% (11.5 - 14.5%)
PLT 101 (140 - 440) He doesn't like this one, either
MPV 9.0 (0.0 - 99.8)

I think my inner kung-foo fighting mouse/hamster needs an extra helping of cheese for all the work the little fellow has done!



In fact, he may really be...

My Inner Mouse Finally Showed Up

Well, I knew it had to happen sometime. You know that one of the chemicals that they give me is Rituxan and that is made from Mouse proteins or Chinese Hamster ovaries. Yesterday, soon after they started the Rituxan, I felt a strange popping on the top of my head. I called to Cheryl to look and, sure enough, mouse ears had popped out of the top of my head. I immediately put on my "Faith, Love, Hope, Win" hat to try to contain them, but they popped through that too. I told Cheryl to grab the camera so we could document this strange event. The evidence is here for all to see. Do you think we might have enough for a law suit? What's next? A tail? Only a cheese diet? Litters of critters? Will I have to sleep in a wire cage? Already I can't pass a trash can without an overwhelming desire to rummage through it. I guess this is still better than nausea or hair loss. Sigh, the things we have to put up with to beat Cancer!












Actually, the chemo went great again. Only this strange side effect documented above. You know, I think those ears make me look fat! I intentionally put on weight before the start of chemo because they said I wouldn't feel like eating and I would have to fight to keep weight on. They were wrong again. I have gained weight after each chemo round and am now almost 25 pounds heavier than my low weight last fall. Guess I will have to really work on that. I think some of it is the effects of the steroids and some of it is because I can't keep my butt out of the refrigerator or the M&Ms and cookies that my Mom likes to eat. We don't usually keep candy and snacks in the house, but Mom likes them, so we have them around.

I only slept an hour last night, but I did sleep most of the day yesterday. They start off with a Benadryl infusion and that really did a bigger job on me than usual. I couldn't get through the movie I brought to help pass the time and then I slept for several hours after we got home too. After the Benadryl wore off, I guess the steroids took over. This morning I started with the Prednisone tablets so I will try an Ambien tonight to try to get some sleep. If all else fails, I can overdose again on Phenegren -- NOT!

I had the two Tylenol to begin, then the bag of Benadryl, then the Rituxan, then the anti-nausea bag with the bag of steroids and then the bag with Cytoxan. We started later in the morning, but we were still done by 3:30, so not too bad. Cheryl left about 11 to do some shopping and brought lunch back and woke me up to eat it. Chicken sandwich, but no cheese - hmm.

My blood work from yesterday continues to look good! In fact my neutrophils went up. Now this is a different lab and they reported them as granulocytes, so I don't know how much difference that makes. Anyway, for those of you who understand this stuff, the results are as follows with this labs normal range:

WBC 5.0 Range 4.1 - 10.9 YEA!
LYM 2.8, 55.7% Range 0.6 - 4.1 and 10.0% - 58.5% Double YEA!
GRAN 2.0 Range 2.0 - 7.8 YEA (I think)
RBC 4.08 Range 4.20 - 6.30 Low, but not too bad
PLT 94 Range 140 - 440 Low, but not too bad and up from my lowest

Next blood tests will be April 10th and next Chemo with blood tests will be April 17th.

Again, thanks so much for all your prayers. Everything is going much better than I had imagined. I am continuing to work from home quite a bit and this also keeps me away from all the folks who keep getting sick at work. There have been many with flu-like illnesses that last for days and I have escaped it so far.

A Big Mistake

Thursday night I did get five hours sleep out of the sleeping pill. However, starting yesterday morning around 10 a.m. I got 20 hours sleep, but it was a very dangerous way. I made a very big mistake out of stupidity.

I was working from home on the new course (and making progress). About 9:30 a.m. it was time for my morning Prednisone pills. I went out into the kitchen and grabbed the bottle from among the many and took four tablets.

By 10 a.m. I was feeling very strange and laid down on the couch and fell asleep. That afternoon, my daughter, Cindy, came over and could barely rouse me. I had promised to help her hook up her trailer for a trip she is taking to visit her husband in the oil fields over Spring break. She went on without me.

Cheryl came home, fixed dinner (usually my job), and and finally got me awake enough to eat. Then I went back to sleep. Everytime I got up to use the restroom or take my evening pills, I was staggering and felt very drugged. I spent the night either on the couch or in my recliner. Only waking long enough to use the restroom and then collapsing again.

The problem? Seems when I took the Prednisone yesterday morning, it wasn't Prednisone, but Promethazine Tabs 25 mg (brand name Phenergan). It is a very similar size white pill just like Prednisone. Only I took FOUR times the normal dosage. It is used for me as a supplementary drug for nausea instead of the more expensive Zofran. I only use it if needed on opposite weeks from chemo. I have only used it twice in the last several months. I counted the pills and, sure enough, there are four extra missing. Besides use for nausea, it is an antihistamine and also used as a SLEEPING AID!

When I looked it up on Google, there is a warning that it can also stop your breathing if overdosed. I was VERY lucky. Bottom line, read labels thoroughly before taking any medication. If I can help anyone avoid my mistake, it is worth it posting my dumbness here for all to read.

The good news is that my nose isn't running from my cold and I did get lots of sleep. Dangerous way to do it, though.

Cheryl is now monitoring my meds. So this is what it is like getting old? :(

Third Chemo Week Now Have a Cold

Had blood work again just before the treatment and saw the doctor. Counts were down again and he wasn't as pleased that they are bouncing like that. Neutrophils that fight infection are getting lower and that may be why I have caught a cold yesterday. Nose and chest. He said we may have to do all six rounds to try to get the numbers to even out and hold steady. WBC was in the normal range, but lymphocyte percentage up. We discussed my not sleeping on Prednisone and discussed the Benadryl along with 3 mg of Melatonin. He offered a sleeping pill but I told him I wanted to try this first. The chemo infusion went without a hitch. No reactions. Started about 9 a.m. with five different bags of stuff. First Tylenol pills, then Benadryl infusion that makes me go to la-la land, then the big bag of Rituxan (my mouse parts), then a bag of steroids, then a bag of anti-nausea medicine, all followed by my bag of Cytoxan chaser. A bag of Saline was going steady the whole time. At least it all goes through my portacath in my upper chest, so I didn't have to get re-stuck each time. We were done a little after 2 in the afternoon. Nothing like the fresh smell of chemo in the morning. Well Monday night I got 1 hour of sleep finally at 9 a.m. Tuesday morning. Tuesday night I got two hours sleep starting at 3:30 a.m. I went to work. So yesterday I called and asked for a prescription. He gave me Ambien that is supposedly strong and works quick. My cold started coming on in the afternoon. I took the Ambien at 10 p.m. and went straight to bed. I was awake until after 1 a.m. and then woke up at 5:15. At least I got four hours sleep. I got up to get ready for work, but it was like I was in a fog and was very slow going. I finally got to work after 8 a.m. I am usually there at 7 a.m. Tonight I took it at 9 p.m and am waiting for it to kick in. It is now midnight and I am feeling nothing. Oh well. I did get some medicine to maybe help the cold. Now taking at least 24 pills a day this week, counting 8 pills of Prednisone, two anti-nausea a day, cold pills dissolved in mouth every thee hours, stomach pills, 2 heart pills, blood pressure pills, two kinds of cholesterol pills (3 pills), a fish oil pill for a different cholesterol, Benadryl, and then shoot up with insulin before meals. Now the sleeping pill. Tough to remember them all. Mom always said I was a pill growing up. Hmmm, wonder why I feel kind of drugged? ('Enter' key not working on the keyboard, so can't make paragraphs????) I did get permission to work from home on a course I am writing while I am doing the chemo. That will help. I should be able to get more done and then cat nap when I can. I think this will help. Please pray that I will start sleeping better and pep up and get back to my jolly old self. Thanks. Going to bed now and wait for the sandman to arrive. Hope he knows my address, we moved 10 years ago.

Honored and an Update

I have told you in the past that there have been many people who inspired me this past year since diagnosis. However, today I want to tell you about another connection that began before my diagnosis. A lady I work with, Jean, told us in 2004, about her cousin, Ed Schexnayder, who was battling Acute Lymphocytic Leukemia (ALL) and Non-Hodgkins Lymphoma. He was diagnosed in January 2004 and was only 29. I had just lost my Dad the previous November to Leukemia, so I was keenly interested. She forwarded emails that Ed wrote to family and friends as he fought his battle and the many ups and downs in his journey. He underwent some difficult chemo treatments in the Spring of 2004, and things were looking pretty good. His attitude was inspiring! It was discovered that his sister, Julie, was a match for a bone marrow transplant and that possibility was being explored. During all of this, he continued working on his MBA, receiving all A's and B's! (He was eventually awarded his MBA!) He was surrounded by loving family and I know that motivated and inspired him. As they moved into the fall, he was preparing for the transplant with lots more chemo and full body irradiation scheduled. His sister was a brave lady too, because the bone marrow donation is not pleasant as they have to drill many holes into the bone to get enough of the good stuff. In October, it looked like he was struck with Bell's Palsy- paralysis in his face. When they got to MD Anderson, in Houston, to begin the procedures leading up to the transplant, it was discovered the Leukemia had returned. It changed all the plans and delayed them to December. They had to knock the Leukemia back down and now could only do a stem cell transplant from Julie (an easier procedure for her, I believe). It turned out that the Bell's Palsy was because the disease had now gotten into his Central Nervous System. He was also plagued with soars in his mouth, throat, and all the way into his stomach. However, from the emails I read, he never lost hope. He was not a whiner! I was amazed at his bravery and his positive attitude. His family continued to rally around him.

Around Christmas, I think, he did have the transplant. It was successful and he was 100% donor cells. However, near the end of April, 2005, Ed lost his battle. His lungs were severely damaged from the total body irradiation and they could no longer support his body any longer. Basically he died of acute respiratory distress syndrome. He left behind a loving wife, Maydel, and twin children, Alan and Madelin, who were only two years and two months old! The one thing I want to point out is that he never, ever gave up. I pray for his wife and the kids. Ed died only a few weeks after my diagnosis, but I think God led me to his story before that to show me how someone can bravely and confidently face difficulties. I don't know why God allows these things to happen and it can be frustrating for us. We just to have confidence that He has a greater plan and we have to trust in His purpose. Ed's short life touched mine in a profound way.

Now, his oldest sister, Leah, is honoring Ed's memory and is participating in an upcoming half marathon for the Leukemia and Lymphoma Society's Team in Training. She is raising money for research for all blood cancers. As she said, she felt so helpless at the time Ed fought his 14 month battle, but now she wants to be able to do something to help others. In her own words from her fundraising site:

Although Ed lost his battle with ALL, there are so many others that are still fighting cancer and by participating in the TNT program I can actually DO something to help. More than 670,000 Americans have leukemia, Hodgkin or non-Hodgkin lymphoma or myeloma. Every five minutes, someone new is diagnosed with blood cancer. Every nine minutes, someone dies....

When Jean told us Leah was doing this, I went to her site and made a small donation and wrote to her and told her briefly how Ed had touched my life. I was amazed, honored and touched that she added me to the list of those she was running for. Her site is listed at:
http://www.active.com/donate/tntswtx/LSMedine

Now a brief update on me. Today is the last day of the Prednisone part of this week's treatment, so perhaps I will be able to crash about noon tomorrow and get some sleep. I have not been nearly as hyper and wired as the last round and in fact, have felt a little draggy (such a word?) the last two days. I have come to work each day, but am only sleeping from between and hour and a half to three hours each night. But that is OK, because NO NAUSEA! Yea! The anti-nausea pills are working. Also, my hair stopped falling out again - ha! I know you were worried about that. If the doctor allows it on Monday, I will be heading out of town to conduct a training with a co-trainer. If not, my supervisor's have a back-up available.

I will post again if I have something significant to say :)

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!

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!

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 www.williamryall.com)

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!

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!

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.