Progress is slow moving

Its been quite some time since I (we) have been back to this blog. I've often thought of posting but couldn't find the words or the energy. I think the past 6 months may have finally caught up with me. Once I was out of that survival mode, the process of reflecting on where we have been, where we are, and where we are going has been more challenging than I would have predicted. Funny, you'd think it would be just the opposite...that I would be able to post now with no trouble and reflect back with no hesitation.

Roger continues to make progress. The progress is just in very small tiny steps which can be very frustrating. He is tired of not being 100%. He is tired of pain. He is tired of being tired. He misses eating "normally"...I miss the social aspect of it. We used to go out all the time for lunch/dinner (naturally, spent way too much money). Slowly Roger is getting back into eating ~ its just vastly different. He can eat, maybe, 1/2 cup of food or 1/2 a sandwich at a sitting. He has no food restrictions except for what his body rejects. We haven't been able to predict with any accuracy what food will "work" at a given meal. Sometimes he can eat something as rough/tough as chicken fingers or pork tenderloin and other times he can't eat scrambled eggs. So, every meal is an experiment. We find that its usually easier to experiment at home in the event something doesn't "work" and Roger feels that he needs to bring it back up. Not a pleasant experience to begin with but especially not pleasant if you are out at a restaurant. He may have to go in for another procedure wherein the doctor will "stretch" the esophagus (what remains of it) to allow for a larger passage way for the food. Sometimes the scar tissue can present issues for swallowing.

I try to set out food/snacks for him every morning to take with him for the day. He is SUPPOSED to (operative wording SUPPOSED to) eat 5-6 small meals/snacks a day. He gets "too busy" to stop and eat or so he reports. I've tried to suggest that perhaps eating and taking care of himself should take priority...I'm met with the infamous Roger scowl or when talking on the phone shear silence. Unfortunately, what happens if he does not eat often is that he gets very weak, shakey, feels like he could pass out, etc. His body simply does not have enough nutrients to sustain himself. His Aunt Jacki and I have tried suggesting protein shakes or nutrition drinks like Boost or Ensure. The same scowl or silent treatment is returned.

Roger is down to 190 lbs. When we first started this journey, 6 months ago, he was 232 lbs. He is much thinner, there is virtually no muscle on his frame. You can see the weight loss in his face. See the two pictures here. One is from the beginning of the treatment (on the left) and the other (on the right) is approximately 2 weeks ago.

He would be the first to tell you that he could afford to lose the weight and that he was heavier than he wanted 6 months ago ...but man, is he getting skinny. It will be fine if we can put a little muscle on his frame.

Its a long process and we have a lonnnnngggg way to go. The progress is so small, so slight that it can be discouraging for Roger (and me). We have a godsend in the nurse, Lisa, who works for Dr. Freeman. She's been really great about taking our calls and talking to us about the process and the long-natured part of the process and just generally being supportive to both of us. She had to remind Roger the last time that they spoke that he is at a disadvantage in his recovery because he is so much younger than the average patient....basically he is raring to go whereas the "average" patient with this cancer would be much more sedentary and therefore not quite so anxious to be up and at it..

Its a strange place to be - kinda between worlds, so to speak. He is out of the hospital, off the tubes and hoses, very few doctors' visits....sort of normal and yet not normal. I think it would almost be easier psychologically for him at some level, if he still had the hoses and tubes and stuff. Somehow it would make more outward sense that he didn't feel good. Now, I don't want to paint a misleading picture. Roger IS getting better. Now, we just compare how he feels daily to how he felt 2 weeks ago or 4 weeks ago or 8 weeks ago. We reference how much he can do now verses then. Its much better than comparing today to yesterday...because the change is so slight and a little discouraging.

We are both back to work which does seem to help bring a little more normalcy back to life. Roger goes in daily as his body will allow. He is learning that if he over does it, then he "pays" for it later that night and the next day when he feels crummy. Its an ongoing learning process. I am back to work fulltime. I told you back in January that the team I was on was moving to a new company. Well, I elected to not join the team at the new company but instead stay and with the "old" company and build my own book of business. In light of everything that Roger and I have been through....the decision to stay was the right one for me and the right one for us. There will certainly be some challenges especially in this market but its still the right decision. I'm excited about the prospect and Roger seems to be as well.

So, there you have it. Life as of now. Roger is getting better and getting stronger daily. He is "cancer-free". The road, though a long one, is smooth and relatively straight. There will be more challenges along the way but nothing we can't handle. Our continued thanks and love to all for the support you've shown us over the last 6 months.

We will be postponing the island-hopping birthday bash celebration for Roger's 50th Bday until sometime early next year. We think that it would be better to go when he was feeling better and eating more consistently. This year though, we will have a couple different bday celebrations. We may do an "easy" trip to Belize or the Bahamas or maybe Keywest for a long weekend - just sit and chill. And, we will definitely have a bday party in May to celebrate 50 years of LIVING for Roger. Details to follow soon.

Love, Angie & Roger