Part 23 and 24

Part 23 “No line on the horizon”


I have now reached the one-third mark, a milestone of sorts, and I finally allow myself to look back (beyond the present moment) to what I have accomplished. I still have far too much to go, though, to anticipate completion. The peak of this Everest is still too far off. Becah accompanies me on this trip, welcomed since I usually make these treks alone. I weigh in today at 169.8, a big drop. I am on my fourth successive day struggling with a dark mood despite my reaching double digits on treatments. The shot today stings (I guess I didn’t shake the vial hard enough) and my dry mouth is worse. The techs make many alternations positioning me today, and I am getting irritated. Never mind that their obsessiveness and precision will result in zeroing in on the target that is trying to rob me of my life!

After treatment we visit Dr. Gu-, another specialist who is supposed to be the g-tube expert. He demonstrates proper use of the tube, and I must admit I feel much better now (I also am more happy that I can exercise again with this adjustment).

Despite my better status, I endure a rough night, waking hourly with dry mouth and strange pains in my stomach (in the area of the tube). In the early morning Brooke sits by me in bed, comforting me with assurances that she loves me. It is a bright, cold, clear morning as I drive to Kingwood, listening to U2’s “No Line on the Horizon” (an ominous title if there ever was one). More waiting. So much of the time I spend waiting to see doctors, nurses, staff…just waiting. It’s the waiting that drags all this out. Sometimes I think this is worse than the anxiety of meeting with the doctors, the shots, and the treatment sessions themselves. I go into a small room and pour a Boost into my tube for nourishment before I am finally able to enter the radiation room.

Back at home, after resting and after the kids return from school, the kids and I sit by the fireplace and watch the Berenstein Bears on TV. Bree and Becah return from the store and make pizza together. It looks delicious, and I long for real food again. I find that I have reached the place where they said I eventually would arrive. I struggle with eating orally and for the most part must consume a liquid diet through the feeding tube. I pop a new pain pill tonight and feel very relaxed. I have used these very sparingly thus far, but there are times when I just need one. My mood is improving today. To top it all off, I go to the mailbox and discover a huge envelope filled with letters and cards from the choir members!


Part 24 Saline flushes and other tricks


The next morning’s treatment is preceded by my low blood pressure that requires a saline flush and other tricks to elevate it. The nurse has trouble accessing my port-o-cath, and resorts to giving me an IV in an arm. That night at home, Becah is enjoying a healthy pesto salad dish, inspired no doubt in part by looking at my unhealthy self with a dry mouth and eating through a tube. At least I am serving as an inspiration of how not to end up.

After another long night, a rainy and cold morning greets me. I try to warm up by sipping coffee and trying a little oatmeal, but my mouth is rougher and drier, so swallowing is hard. I drive to Kingwood listening to music by Yes, always one of my very favorite bands. Their music is as inspiring as you can get. Songs like “Something’s Coming” and “Survival” seem appropriate for the moment. Treatment 13 sees my blood pressure in better shape today and my mood continues to be brighter despite the dark day.

At home, after resting I exercise then watch a “Prisoner” episode (I will eventually make it through the series). When Bree returns from school it’s kid TV, an episode of iCarly followed by checking emails. The many well wishes uplift me more. My dinner options are dwindling – rice and broccoli just barely cuts it. After helping Brooke bathe, I talk on the phone to a choir member, Darla, who remarks that every Sunday someone comments about me. Before bed, Bree relates the following words of wisdom to Becah: “I want GG to leave because that will mean daddy’s treatments are over and he can go back to cooking and washing dishes and you can pay more attention to me”.

It continues to be frigid the next morning and my mouth is dry like the Sahara. I try to douse it with coffee and milk. On the drive to treatment I listen to more Yes music, an album called “Magnification” which like all their music elevates my mood like few other artists can. This time in the radiation room they line me up right the first time, and I also get a roll of Transpore tape free! The little things now excite me (sad in this case that I am overjoyed at receiving gifts of special adhesives that keep my tube fitted securely). The reality though is that my tube has become a constant torment to me and I am exasperated in coming up with ways to live with it. My doctor says I am looking good, despite the fact that my blood pressure has dipped again.

Becah and the girls hang out with the neighbors and others next door in what has become known as “Fun Friday”. This is a more respectable name than its former one – “beer Friday” (when the little kids start saying, “hey mom, is it beer Friday today?” you know it’s time for a change). I opt to dodge the ladies’ gossip and instead watch a concert DVD, Moody Blues Live at the Greek Theater, which I enjoy despite everything. Positive literature is great but nothing lifts you like music.

After a very cold night with little sleep I have breakfast with the kids on the pull-out couch (an egg kolache which I manage to eat despite the dry mouth). The sun creeps out as I rest on the couch later, while Becah takes the kids shopping. No treatments today – a blessed Saturday free of all that. We celebrate an early Valentine’s Day, with shirts for dad, necklace for mom, and the “Glee” TV show CD for GG (since she never misses an episode). Roses in a vase decorate the kitchen table where Becah, becoming quite the chef, has prepared salmon and spinach salad for herself and GG while I eat eggs again (since I am able to eat little else).

I get up so often the following night that I simply sleep on the couch, lying there on a very gradually warming morning watching a cardinal in the yard. The family has left for church. I alternate between reading Wayne Dyer’s “Wisdom Through the Ages” (he discusses going inside your mind and creating a positive kingdom there, perpetuating health by refusing to be upset by outside sources) and Thich Nhat Hanh’s “The World We Have” (which reminds us that we are one with nature and how we must preserve it).
Later, as the weather warms I wash the car and with the kids draw chalk animals on the driveway. I attempt to eat ravioli, rice, and vegetables for dinner. It takes an hour to eat (because of my dry mouth), but I finish most of it and am proud of my accomplishment.

Again on the couch wrestling with a rough mouth. I enjoy brushing Brooke’s fine, long hair. I face the bright cold morning, putting on “The Remembering” by Yes because it is bold and beautiful enough to honor this day. At the treatment center I watch ad after ad for products claiming weight loss of five pounds in one week with little or no exercise! But I can top that! Just contract what I have, that will do the trick. I have, however, maintained my exercising regimen, not for weight loss but to keep my strength up. Becah continues her healthy eating (pesto and pita bread, pear and avocado salad, eggplant) and I just sit and watch.