Sweet Times Continue with a Surprise or Two!

May 9, 2007 from Don | Encouraging Times, Photos, Quick Overview, The Whole StoryComments Off on Sweet Times Continue with a Surprise or Two! | ««Previous - Next»»

Every day continues to be an amazing gift. On Monday morning I surprised the whole family by getting up early and taking the boys to school. I felt great and the boys enjoyed having dad take them. Heather didn’t want me to show the picture on the left takphoto-92.jpgen before we left for school because the boys are much more handsome than the picture shows- I decided to share it since we all know our kids go to school half asleep! After I got home Heather & I and a dear neighbor friend Raymond drove to Whidbey Island to garden in the front yard and take care of the lawn. It was a beautiful summer-like day in the low 70’s and we accomplished a lot of work. We headed home about 3pm in time to pick up Bo after track practice. I have included several pictures from Whidbey below.

Tuesday morning I was moving a little slower so I let Heather take the boys to school as she faithfully does every day. I am embarrassed to say that my body really ached, not from cancer or chemo but from all the movement and exercise in gardening. Since I have not had any real exercise in 7 months this was like a full workout. Normally I would ache like this only after a long workout with weights or a run after taking a long time off. I guess I will need to find a way to hraymonddon-whidbey.jpgget workouts into my routine. If I could only get rid of the liver tube I would have a lot more mobility to run and work out.

Tuesday I went to work in Everett from 10AM-2PM and it was great. I was able to see a couple of our new hires in action and have a couple of meetings on strategy. It felt so good to be there while at the same time it also felt somewhat bittersweet. When I’m there I feel so good I want to jump in and help at this critical time in our growth and product launch. At the same time we Don Sleeping at Whidbeyall know that it is hard for me to commit to anything since I have no idea how the new decisions on Chemo will affect my ability to work on a sustained basis. I am almost off morphine (now only 15 mg extended release at night down from over 200mg per day and more recently 60 mg per day). It has taken several weeks to slowly decrease my dose to get to this level. The really great thing is that my mind is so much sharper that I can read and concentrate much better and drive. I do hope I will be able to return to work on a regular basis.

Today was a big day. Heather and I met with Dr Lee at 9:45 this morning. He just returned from his vacation and we had a lot to catch up on. While he was away I had my liver tube replaced and my port-a-cath removed. We also learned that my current chemo is only keeping my tumors from growing. He shared with us that standard protocol would be to stay on this Chemo until something happens- the tumors grow or shrink- so I could continue to enjoy feeling better and have a better quality of life. He said he also knows that I want to do more than just maintenance so we could discuss other options. It is also rare that the tumors shrink if they have not done so from the beginning.

I asked Dr Lee if Dr Von Hoff had called him to discuss the TGen results and he said no. I was very don-and-bird.jpgdiscouraged about this since I was assured he would call this week. I called Dr Jeff Trent and advised him and he said he was going to see Dr Von Hoff tonight and would talk with him. After spending $5000 for the analysis, that was more than a little frustrating, especially since the testing occurred months ago.

Heather and I discussed the idea of going back on Taxol with Doug. While he was surprised we wanted to consider this since I had such bad neuropathy (nerve damage in my feet), he was not opposed to considering it. The more we talked about it the more it made sense, especially since I have been taking Gabapentin and Lyrica, which really seemed to help reduce the neuropathy. After more discussion we decided to resume Taxol at 135 units vs the 220 I was taking in earlier times. 175 units is the normal dose so if I can take 135 units without neuropathy, we will consider increasing the dose to 175 units. I am energized about this decision knowing that Taxol works and that I am full of energy. Also, I only have it every 3 weeks which gives me more good days than the alternative of two weeks of chemo and one week off. As we talked about my energy level I think Doug, Heather and I were all of the opinion that there has been a long term infection with the port-a-cath which sapped a lot of my energy, as well as giving me the night temperatures. I don’t think we will ever know for sure, but I do know that these last 5 days I have felt better than I have in months and have not suffered from night temperatures.

Despite the fact that Doug just returned from vacation and is really busy, he took his time talking to us for about 45 minutes this morning. I don’t know how many of you caught the Ted Koppel Special on Sunday night “Living with Cancer.” It included his best friend and executive producer Leroy Seivers, Lance Armstrong and Elizabeth Edwards (Ted Koppel Special). The bulk of the show followed Leroy’s treatment and thoughts over a 14 month period. I told Doug that there were a number of heathr-at-whidbey.jpgthings that I did not understand or share that they felt in fighting cancer. I was surprised that none of them talked about their faith. Nor did anyone in the town hall that followed the special mention faith making a difference in their fight. In addition they all indicated they hated being treated like a patient, or a room number, instead of a person. I told Doug that I have never felt this with him. I always appreciated the fact that he seemed to care about me as a person and willing to consider anything to help me do beat this cancer despite the odds against that.

Another thing we talked about was minor surgery to remove the tunnel between my colon and my liver. If we are able to do this the liver tube could be removed and I could have a much better quality of life. Doug thought it might be possible for the surgeons to remove the tunnel by operating through the colon. He suggested I meet with Dr Alex Reed, my gastroenterologist and Dr Jorge Reyes, the surgeon who will do the major liver surgery eventually. I called for an appointment right after I left the office. I am also having surgery for a new port-a-cath in the next couple of weeks. We also talked about radio frequency ablation for the small remnants of my lung tumor.

Finally, while on vacation Doug was able to talk to a friend of ours in Argentina, Arnaldo. Originally they planned to meet but it didn’t work out. Doug mentioned how cool it was to go to Argentina and meet a friend who loves Jesus and knows me. It clearly demonstrated to him how many people are praying for me to get well around the world. We closed our meeting today in prayer- how cool is that?

Since I don’t have a port-a-cath I was surprised when Doug asked me if I wanted to start the new chemo (Taxol + carboplatin) today. Heather and I looked at each other and said “Yes!” The port-a-cath is still the best way to administer the chemo but the veins in my arms will work short term. Since prior to the chemo I get an anti-nausea medication, a steroid and Benadryl, I ended up sleeping through most of the chemo. Art Kopicky came by with a chocolate milkshake and that was a great surprise. After he left I went back to sleep until my chemo was completed.

The weather is expected to continue beautiful for the next 10 days. While I fully expect to have the chemo flu in a few days I am excited to try and continue to live as actively as I have been the last few days. Please pray that my energy may continue and the new chemo will continue to reduce the tumors without any signs of neuropathy.

God is Good, All the Time, God is Good!

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