Thursday, March 26, 2009

Husbands Say The Darndest Things

In the class I teach on Sunday mornings, we just completed a wonderful, many-month study of Psalms and Proverbs. Two weeks ago we had a discussion about the foolish, purposefully hurtful things we say or even outright lies we sometimes tell and then we try and cover it up by saying, “Only kidding.” This led to talking about the hurtful things we sometimes say but we didn't actually intend them to be hurtful. We say them without malice, but also without thinking and yet those foolish comments can still have long term consequences.

Occasionally … well, actually often … I get myself in trouble by making comments that I mean to be funny, but because I don’t think them through, actually come out as hurtful. Saying, “Only kidding,” even though I was, doesn't help in those situations either.

I related the following true story to my class.

Thirty five years ago, Cheryl and I were a young couple with two small children, only married six years. I was in the military and not making much money. We did a lot of our clothes shopping at yard sales on Saturday mornings, but on occasion we were able to splurge and buy something new. On one of those times Cheryl got a new dress which she wore to church for the first time. It was a very, very bright yellow with black stripes. It really did look nice on her.

After the worship service she went down to the nursery to get the kids while I was delayed talking to some folks. When I came out of the sanctuary, I saw her down at the end of the hallway that ran the length of the church. She was standing by the door talking to someone else and she had the girls with her.

When I got to her, she said, “Oh, good. I didn't know if you knew I was down here, I was worried you wouldn't find me.”

I said, with a smile on my face, “No need to worry. I saw you from all the way at the other end of the hallway. Couldn't miss you. You look like a big ol' bumblebee in your new dress.”


She never wore that dress again!

Fortunately she started talking to me again last week.

Tuesday, March 24, 2009

Happy Canciversary To Me

I am celebrating my fourth anniversary since diagnosis with CLL/SLL. Now to some folks it may seem strange I would celebrate my Canciversary. However I think every year we survive and can note the date is reason for celebrating. Actually looking forward to celebrating my 20th Canciversary as my Dad did before he died as a result of CLL (and a very bad heart).

To celebrate this anniversary, I have updated the look of my blog. However, in doing so, I lost some links to blogs I was following. Sure hope I can find them again. However, I have added a few new ones I have been reading, but did not have on my list here. You can find them over on the left.

Looking back over the last four years, much has happened since that day in March when Cheryl and I, hand in hand, walked out of Dr. Netaji's office with the confirmed diagnosis. It was a bright sunny day, much like it was here all last week and our heads were spinning, even though we had suspected what the final word would be. It wasn't quite the same suspecting it as actually hearing it. I remember feeling slightly surprised that the world was just going on as normal when ours had been changed forever. I guess I was expecting to walk out to dark storm clouds, flashing lightning and all traffic and movement stopped. That's what it seemed like in my mind. However, that darkness lifted after that first night of prayer. Not to say that the head spinning didn't keep going for a few months as we continued to learn more about the disease.

So what has happened in the last four years?

--I have felt the presence of the Lord with me during this journey
--I experienced the wonderful support and encouragement of family and friends, including friends I hadn't heard from for many years
--I have experienced the power of prayer and intercessory prayer that I had only heard about previously
--I have made many new cyber friends who are surviving CLL and other cancers
--Some of these cyber friends I have since met in person and without exception they were all exceptional people; Dave E, Deb and her mom, Paul, Anita, Tom and JL
--Unfortunately I have lost way too many cyber friends to this disease over these four years; too many and too sad to post all their names, but each had a unique story of courage
--I have had three bone marrow biopsies *** YIKES***
--Numerous infections including lots of sinus infections, teeth, pneumonia several times, E. coli infection in lungs, strange rashes and itching, and other stuff I may have tried to forget
--I have seen my primary care doctor, endocrinologist, hematologist/oncologist, CLL specialist, cardiologist, neurologist, pulmonologist, surgeon, dentist, oral surgeon, endotontist, optometrist and perhaps others
--Chemo port implanted in my chest
--Extensive dental surgery
--Eight rounds of chemotherapy with mustard gas derivative alkylating agent, mouse parts and lots of high dose Prednisone
--Sixteen (I think) day-long IVIg infusions with steroids
--Discovered I have some of the best insurance coverage around for which I am very thankful
--Many steroid induced sleepless nights
--Way too many steroids. Just thinking about it may put me into roid rage :-)
--Bucket list trips to the Grand Canyon and an ocean cruise to Progresso and Cozumel, Mexico; thanks to my daughters!
--I retired from a job I really liked (I have liked all but one of my jobs in my whole working life)
--I was approved for Social Security Disability
--I got handicap plates on my car
--My back continues to deteriorate
--Have gained sixty pounds now since starting chemo a little over three years ago
--Five wonderful annual "John's Not Dead Yet" luncheons with former coworkers from probation training (Well they call it "The Friends of John" luncheon, but I know the truth! LOL!)
--Fishing with my grandsons
--Movie dates with my granddaughter
--Babysitting my youngest grandson
--Middle school grandson living with us during school year (and behaving VERY well now at home and at school)
--Cheryl has survived multiple lay-offs at her work in the housing construction industry. She was told after the last round that they could never afford to lose her when she tried to volunteer to take the place of a young man with small children who was laid off
--Being a house husband but one who HATES to dust for some reason; cooking, laundry, vacuuming no problem but always run out of steam when it comes time to dust (blog post for that solution coming soon - written in my head weeks ago)

I'm sure as soon as I post this I will think of other things, but it is 2:00 a.m. and after day long IVIg infusion today, the old mind isn't too sharp. Of course it isn't all that sharp at 2 p.m., either. I will probably still be awake when Cheryl gets up for work because the steroid infusion that goes along with the IVIg always has me wired all night.

Speaking of the infusion, it was an unusual day in the chemo room. In the main area where I sit, always next to the window, there are six infusion chairs - three on each side of the room. It was a little unusual in the fact that there was a lady who was there when I came in and who was still there when I left. Usually I am the first one to arrive and the last to leave. Secondly, in the remaining four chairs, thirteen people came and went during the day. All but one were women. All were in relapse from their cancer. Two were undergoing chemo and radiation. One had radiation burns after 32 rounds of radiation. All but three of the ladies were bald and each had a wonderful hat, colorful turbin or beautiful scarf wrapped around her head. One lady was in terrible pain. One lady was very sick to her stomach. One lady's treatment isn't working and the tumor is inoperable. One lady's son surprised her last week when he showed up on her doorstep from Japan. He is in the Army and was coming back to the states for a short trip to another state for the military. He is a helicopter gunner and was in Afghanistan and will be going back after his tour in Japan. She cried. All seemed optimistic. I prayed for all of them.
I got home at five.
I just prayed for them again.

Wednesday, March 18, 2009

Are The Lobby Lights Flashing?

That is the big question on our minds lately. Is the "Intermission" almost over? Regular followers of my ramblings may recall that when I stopped chemo three years ago this summer, I did not reach remission. In fact, my doc said we were stopping chemotherapy for three to six months only to give my body a rest from the poisonous chemo drugs (one of the drugs I took, Cytoxan, is actually a derivative of the famous World War I poison gas, Mustard Gas, and has similar properties.) A bone marrow biopsy before chemo showed my marrow 90% infiltrated with cancer cells but after eight rounds had only been reduced to 50%. As time passed and I didn't progress, I decided that even if I hadn't reached remission, I had achieved a real good intermission. Then a year ago last Fall, things started to progress again and it looked like we were approaching more chemo, then suddenly I stabilized. This is a strange disease.

Well, the end of December's blood tests showed movement again. Then February's showed even more. Now Monday's seems to have confirmed the fact that those little circulating cancer cells are accumulating again. The blood test in December showed a doubling of lymphocytes in four months. Doubling in six months is an indication for treatment, BUT you need to see a trend over many months. February's showed a tripling in three months. yesterday's showed a tripling from a test four and a half month's ago. My neck nodes are getting more bothersome all the time and I keep feeling more and more of them in all the chains of the neck.

Yes, I think the lights in the lobby are flashing to indicate intermission will soon be over, but I don't want to go out in the hall yet to confirm. In fact, it is tempting to just go home and skip the second act. I know that would be kind of dumb though since I already committed to see this play through.

What about the other blood indicators? Well, obviously the white count rose, but so did the red cells, all the way to normal! That is encouraging as I am not anemic now. Platelets dropped over 10,000, but are still above 100, so that is good.

My best guess is that no action will be taken until the summer when I go back to MD Anderson. That will also give us four more blood tests to get a good picture of the trend. Now to some of you that may seem counter-intuitive as you would think we would want to knock it down if it is rearing its ugly head. With this cancer you only get so many shots at pushing it down and you want to make sure you get the timing right. You don't want to fire all your bullets too soon but you also don't want to wait until the enemy becomes so powerful the bullets have little effect. Fortunately, my particular brand of CLL/SLL isn't as aggressive as some, but also it isn't as indolent as others. Monday I will see my hematologist/oncologist and also get my monthly infusion of IVIg. I'll let you know if he wants to change the game plan.

I just hope Act II is worth the wait.