The Saga Continues

Sounds like a soap opera, huh? I can just hear the organ music playing in the background. Do they still do that on soaps today?

Anyway, I will work on being less verbose. Maybe. Well, I had the CT scan and then he set me up for my bone marrow biopsy and aspiration (BMB). Obviously, the CT scan is a piece of cake as long as you are not claustrophobic and I’m not. Now that other test made me extremely nervous! I read everything from it was a horribly painful experience to no problem at all. Several folks on the Cll.Acor listserve said their biopsy was painful when done locally, but no problem at MD Anderson in Houston. Well, mine was going to be done locally. I don’t mind needles for shots and have gotten used to them for blood draws, but the thought of a long needle going all the way into my hip bone via my butt, pulling out some marrow and then taking a small core of bone out did not sound like how I wanted to spend a morning. Advice on the listserve said to make sure the technician gave plenty of time for the local anesthetic to take effect and engage them in small talk so they didn’t start too quickly. OK, I could do that. I went in for the test at a local hospital. I was VERY nervous. As soon as the nurse came in I started asking about the kids, grandkids, favorite movies, latest books read… Oh wait; I didn’t have the local yet. Anyway, I was in a room with a CT machine. I hadn’t read anything about that. (By the way, so far I have only read about one other person that had the test in conjunction with a CT scan and to this day, I don’t know why.) I went in and out of the machine, lying on my stomach, several times. Each time they would draw an “X”, I think, on my back side and put some type of markers there. Guess I should have asked why. At least they protected my modesty by placing a blanket over most of my exposure. I told them I was very nervous and they said don’t worry, you won’t feel a thing. Right, that’s what they all say. I even mentioned that I was told to engage them in conversation while the local took effect. The tech said it would not be necessary as I was going to have “conscious sedation” and it worked really fast. I would get it through my IV. OH, so that’s why I had an IV, I had wondered about that. OK, so I do sometimes act like a sheep being led to the slaughter.

Well, they positioned me semi-bent over the end of the table I had been lying on for the CT scan and removed the blanket. There was the end of my modesty. So, there I am with my butt facing the door when it opens and someone else enters. I hope nobody else was passing by in the hallway because if they were, I probably traumatized them. I was introduced to Dr. somebody who would do the procedure and then they put the shot in the IV and I was off to La-La Land. I felt nothing and don’t remember much. At one point I hallucinated and thought I heard the Dr. say I had really tough bones and to hand him the hammer. I then, clearly had the mental image of a large spike on my backside and the doctor was holding it and a tech was striking it with a sledge hammer. I even “heard” the clanging as the hammer struck the spike. HA! So I guess that is what I missed out on by never taking illegal drugs in the 60s, 70s, 80s, or anytime. Soon they were wheeling me to recovery where my wife was waiting. I took another nap. After a bit, I woke up, they released me and we went home. All that worry for absolutely nothing. I wasn’t even sore back there. Only a small Band-Aid was over the wound and nothing hurt…neither then nor the next day. Wow, that was easy.

On April 18th I went back to Dr. Netaji for the “official” diagnosis. Just as he thought, CLL (Chronic Lymphocytic Leukemia). The bone marrow was 70 percent involved and I had numerous lymph nodes infected and swollen in my groin, stomach, under the arms and around my neck. I had been feeling the ones on my neck while shaving for many months, but I thought it was because of all the weight I had been losing. Back in December I also wondered if I might have infectious mononucleosis, something I had every two years from age 12 up to mid 20s. I was going to ask my regular doctor the next time I went for my diabetes checkup, but then I forgot to ask.

Dr. Netaji said I could start chemo that week if I wanted. However, I had researched and discovered that if a certain condition is present, then the traditional chemo therapy (Fludarabine, Cytoxan and Rituxan) might not work as well and could be a waste of time and cause my body harm with no benefit. Then a different chemo would be done on top of that. These are fairly new research type tests and were not available in the general community at that time. (Now available through Quest Diagnostic labs in California – see clltopics.org Prognostic and Monitoring Tests for details.) Back then, they were only done at MD Anderson in our area. In talking with the doctor, he encouraged me to go to MD Anderson (in Houston), take the test and get a second opinion. Then I would return to him for the treatment. He said it would be OK to wait a month or two to begin treatment. If there had been 80 percent involvement or more, he said he would not want me to wait.

So, he sent all my test paperwork to MD Anderson and they were to get in touch with me in about two weeks to set up an appointment. I lost another 4-5 pounds that week, even though I didn’t want to. Hmm, I was wondering how much of that 75 lbs I had now lost was attributed to the hard work on my diet and how much to this disease? Guess I will never know that answer for sure. My guess is it was a little of both.

He said he would give me a copy of the tests, but by the time we got done talking and him explaining things, I forgot and so did he. When I got home, I noticed on the one piece of paper that I did have that under diagnosis was listed CLL with MDS. Great! MDS? I saw that somewhere in all my research, so back to the computer I went. I wasn’t real pleased with what I read, but thought, “Oh well, just one more item to the mix.” MDS is mylodyspastic syndrome = a group of blood and bone marrow disorders in which too few red blood cells (RBCs), white blood cells (WBCs), and/or platelets are made or when made have an abnormal appearance (dysplastic changes). These dysplastic cells do not function normally. Made sense to me since my platelets were low at that time.

In order to see how long I might have had this, Dr. Netaji wanted to get any past complete blood counts (CBC) from my primary care doctor so I went over to get them. Unfortunately, we really don't know how long I have had this because there have been no CBCs done in the last 8 or 9 years, since I have been going to him. That is the one thing I am upset about because blood was drawn on a minimum of every six month basis, but a simple CBC was never a part of the tests.

I thought I had totally accepted this disease the first week I knew about it, but after that appointment, I wasn’t sure. It seemed so much more real and more than a little scary. But I kept telling myself that it was OK to be nervous and a little scared. That's normal when ever we face tough things that are somewhat unknown and it didn’t mean my faith was any less real. I keep holding on to the example of my Dad and how he dealt with this and got through MANY more years than the average -- so I have good genes, right?

I think it was that night that I woke up shaking violently. I had dreamed that since the cancer was throughout my blood stream I should be able to vibrate it out through my skin as it circulated around my body. So I started shaking, er, vibrating, real hard to get those little cancer buggers out of my blood! Cheryl, once again, thought I had lost it!

Cheryl and the girls were doing pretty well--at least keeping a brave face around me. Cindy, my youngest, came over that night and told me that she and her husband had decided to send us to Hawaii before I started treatment and that they could get reservations for next week! Bless her heart! I have always wanted to go there, but now was not the time because I needed every bit of vacation time I had (and then some). I promised her that I would take them up on the offer when I went into remission after chemo. She wasn't happy, but accepted it. My youngest grandson, Jimmy, who was living in San Angelo at the time, asked me if I had lost my hair yet! Funny, since I am already bald on top. (Hmm, now I have an excuse to try a hairpiece?) My Mom, who had been visiting with us since January, told me she had a little over $2,000 in the bank that I could have if I needed it. Sigh, that is everything she has! My daughters and my one brother who is healthy and young enough, had already looked into being a bone marrow donor, if needed. (Siblings have the best chance of being a match and offspring rarely match.) I truly thank God for my family and the closeness we all enjoy because I sure can't see how anyone could go through this all alone! God and family, they are my strength.

Well, I said I would work on being less verbose. I should have known that wouldn’t work in one try. I teach the fact that change happens in small steps – LOL. Tomorrow I WILL get to the MD Anderson trip and tell you about a mistake in diagnosis that was made.

Thank you for caring.

P.S. There is another fellow I have been in touch with through this blog service. He has very advanced Prostate Cancer that was diagnosed 10 months ago. His name is David and I have promised to be praying for him. If you are so inclined, I would ask that you pray for him also. His blog is a terrific read as he so clearly pours out his heart and soul as he fights his battle. He has been an inspiration to me. You can read his blog at: http://prostatecancerat42.blogspot.com/ (One of these times I will figure out how to put a simple link in here - still learning)