More CT Scan Results

We got the results of the latest CT scan back. While there was noticeable growth, it was not as great as we expected (I have not had any treatment since my last scan).

So that's the bad news, the good news is that my platelets have recovered enough that they are putting me back onto on my single-agent treatment program using Rapamune. At this point my doctor wants to keep me on the treatment no matter what my platelet count is. I'm knocking on wood here, but I think we can stop this regrowth by starting up this treatment.

A while back I started an exercise program and am taking a protein based drink. So I've gained a healthy amount of weight and am re-gaining the muscle mass I lost during the rough patch I went through in late August through early September.

I don't think I mentioned this before, but I was stunned on how much muscle mass I lost during that period. At the time I was sleeping much of the day and getting no exercise. If I had known how sickly looking I was to become, I would have tried very hard to do something about it. I'll try to re-visit this later because I think this is a very important condition to avoid. But it's good to know that I've put back on 10 pounds with about 5 more pounds to go.

Knocked My Socks Off

I've passed my "3-year survivorship" mark and with your support I hope to pass many more. I am blessed to have friends like you (some of you have knocked my socks off with the kindness you have shown to me--thank you). Anyway, I wish you all a very happy holiday season and the best in 2008.

CT Scan Results

I have had another CT scan which showed "minimal" increase in the cancer. That makes me pretty darn happy and my doctor seemed to be pleased too. So the new treatment with Rapamune may go on.

However, I've been still struggling with sciatic pain in my right leg. When it's bad it's bad! Darn thing cuts into my sleep causing major spaciness, etc.

So something might be going wrong cancer-wise in the lower spine to be causing all this pain. If the pain gets worse or spreads, we'll have an MRI performed on that area.

Big Bend

After all this crap I've been through, we've been making a big effort to get out and travel. Last week my wife and I had a little "honeymoon" in the Lost Maples State Park area. I'll try to get some pictures up soon, the area was very beautiful.

Next week we are going to head down to Big Bend and stay in a stone cottage in the Chisos Mountains Lodge. I hope that will satisfy my wanderlust for a while.

Wedding Photos
August 2007

OK, if you have been following along in my journal, I just got married in mid August. I've posted photos on this small album.

OK, My friends are telling me to update my blog!! In the short, lately I seem to be doing OK but have struggled through a tough period starting late in August and it has lasted through October.

2-3 Months
June-July 2007

In early June, my local oncologist estimated that I had about 2-3 months to live (so that would have made it August or September), maybe 6 months on the outside chance.

I couldn't die in August because I was getting married then (my wife would kill me if I dropped dead before the wedding, hee hee). And September just didn't seem to fit my style either (both months turned out to be pretty tough ones though).

I am struggling to keep my blood cell counts up (my platelet count is usually the biggest problem, but my hemoglobin/red blood cell and white blood cell counts slowly sink too). And I have periodic sciatic pains that sizzle my right hip and leg. But with my wife (oops, surprise!) at my side, I feel like I am getting stronger rather than weaker.

Marriage
August 2007

I got married in mid August (August 14, 2007 for the records). We had a short and sweet ceremony with my fiancée, her children and I. We decided that there should be about 5-6 max in the wedding party because my energy and my white blood cell count were pretty low.

I love married life; I just wished I met Elle earlier.

New Doctor!
July - October 2007

I finished the "normal" basic treatment at MD Anderson around May. The Sacoma Group then kicked me upstairs to Phase 1 group. But the Phase One group didn't want anything to do with me with my platelet count so low (below 100,000 count).

So thanks to my cousin who was the primary contact for the for Cancer Therapy and and Research Center (CTRC) which is part of the University of Texas Health Sciences Department, we found another doctor who was willing to help us. Yeah!

The CTRC seems to have as many Phase 1 trials going on as MD Anderson does plus my doctor put me on an intermediary treatment of Rapamune.

I'll have another CT scan in a week and we'll see if there is any progression of the disease when we talk to the doctor.

I'm doing OK but haven't been able to post for a while. Please stayed tuned!

G

Platelet Problems

I've still been waiting for my platelet count to recover (to 100,000) before I can get anymore chemotherapy treatment or surgery (about 80,000 for surgery). For some reason, they are continuing to drop. After my last treatment about two months ago, they made a slight recovery but then for the last month have drifted lower (platelet count is now about 37,000).

No one seems to know why this is. It could be that the cancer is growing again and hampering platelet generation. But I think (pray) it is a temporary thing and they'll start recovering soon.

I have to be careful or I could lose touch with MD Anderson. They've made absolutely no effort to stay in contact with me. I balance that by consulting with my local oncologist. We'll have another blood test soon and maybe get some good news.

Although it's really difficult to tell if I'll see 2008, I'm not giving up by any means. You can count on that.

My Medical Life

Although I have been busy, there has not been a lot to report in my "medical life". Soon, I'll have a CAT scan and we'll see what the latest chemotherapy (Dacarbazine) has done. I expect a trip to MD Anderson in a week or so.

I have been feeling pretty well although there have been some rough spots. I've had to have two more transfusions, four all told for the Dacarbazine chemotherapy. That's 10 units of blood and 3 units of platelets. And the stories I could tell about these transfusions! But I digress. As we tweak this therapy, I expect the need for transfusions to go away.

By early next month I'll report what my oncologist who specializes in sarcoma said, so please stay tuned.

Hard Drive Crash

I deserve two spankings for this! I allowed my primary hard drive backup data to get out of date and I ignored warnings of an imminent drive failure (something called SMART monitoring). Now I'm desperately trying to recover the data. But it is a slow process, might take two days.

Otherwise, I have been feeling OK. I still have pains in my side and chest. But until I get the CT scan reports in mid-March, I really won't have an accurate idea of how this new chemotherapy is doing.

One thing I know for sure, the Dacarbazine really knocked my blood cell production for a loop. I slumped down to 1000 platelets per microliter (150,000 is normal) and bruised up like I was in a bar brawl. The timing was poor, I was helping unload supplies at a Habitat for Humanity build site and whereever I "lightly" bumped myself in several places I bruised. I was so embarrassed that I wore long sleeved shirts all week long.

So I kept to myself the last week and had two transfusions (4 units of blood and 2 units of platelets all told). Now I'm feeling quite well, getting stuff done like normal until the hard drive crash.

The focus at this time is as always, relax and don't worry about the cancer. My time with my fiancee has been precious, if I could exclude the cancer, I can't think of a time when I was happier. So I've been using all the mind calming exercises that I know.

Mind Stabilization

As I was saying on my last post, my focus lately has been on the mind and its powers of healing. I've been trying to stabilize and center myself in order to heal my body. This attitude is talked about in many religions and human development systems.

I think a good introduction to this spiritual way of thought is Sri Sri Ravi Shankar's (of the Art of Living Foundation) article Dealing with Fear. In this article he discusses that centering the mind (or self) allows your mind to be free of emotions such as fear, guilt, and anger. He states "when the mind is free of fear, free of guilt, free of anger, and more centered, then it can heal the system of any ailment."

When I started observing myself, It is amazing to me how much anger and guilt I was feeling. I haven't had to deal with fear that much. But it does pop out every now and then (one instance was at the end of my radiation session).

It's not an easy thing to do, dropping these emotions out of your life. If one could completely eradicate those feelings, I'm sure they are well on their way to enlightenment. However, it is important for one to try to reduce the amount of these emotions.

The Science of Love

If we need to reduce the anger, guilt and fear, then the other side of the coin is increasing the amount of love you experience. Your family, friends, and/or significant other are so important in making your life balanced and not allowing the disease overcome your systems.

I suggest reading Paul Pearsall's "Making Miracles" which was given to me by a dear friend. He discusses this in length (at least in the updated edition which is called "Miracle in Maui"). Basically he says these people are your main Life Support System (emphasis added by me).

I don't understand all of what Dr. Pearsall says in this book. But many parts absolutely clicked with me. Anyway, I don't think it is necessary to understand everything, just taking these few steps will allow you to help stabilize and strengthen your "self."

Maybe the disease will progress and kill me, maybe it won't. But being able to increase the love that I experience and reduce the destabilizing emotions allows me to enjoy the days that I have left.

New Chemotherapy

I'm back and am on a new chemotherapy regimen, since I "failed" protocol on the trial drug Trabectedin. My doctor now chose Dacarbazine for a single-agent therapy.

The latest scans have shown some growth since October, but I figured that this was going to be the case. I was off chemotherapy for about two months. Now that I'm back we'll see if we can stop this growth with the new therapy and eventually kill the cancer.

I'm positive this is going to take a very strong mental approach, but more on that later. I'm feeling quite good considering, very little pain (or at least pain that is manageable) at this time.