Hi! Superman here (more like Stupidman). We had just watched an old "I Love Lucy" episode where Lucy dressed up as Superman to appear at little Rickie's party because the real Superman couldn't make it. She tried to jump through the front window from a ledge 3 stories high but didn't do so when she saw the real Superman already at the party. So I guess I tried to do the same dumb thing unintentionally but only the ladder made it through the front window. I watched it go through as I was laying on my back.
Anyway, I wanted to give you a medical update and a brief idea of where Louise is headed once the chemo and radiation finish up this week.
Many of you wonder why she is still having it in week 7 when it was only supposed to be 6 weeks. From the beginning she was supposed to have 33 radiation sessions. She skipped labor day, so that meant that in the 7th week she would have a make-up session. The chemo department said she should not have 4 sessions of radiation without a chemo treatment so they scheduled a final chemo session for Thursday. They have told us all along that the chemo enhances the radiation and vice-versa. They tell us that the radiation will continue to radiate in the cancer cells after radiation is over because of the set-up of the chemo on the cells. I don't understand how all that works but then I also don't understand why 33 days of a radiation gun doesn't burn a hole right through her either. So I work by faith that they know what they are doing.
Today Louise and I met with Dr. Racine, the radiation oncologist, with whom we have met every Monday. She told us that she would not have just 6 weeks after chemo and radiation to heal, but more like 3 months. They would not give her the pet scan until 3 months later. She said it would take that long for the radiation and the chemo to completely leave the body and it would give the body enough time to repair itself and get the immune system functioning at full strength again. She felt like the petscan would pick up inflamation and even the radiation as "false reads" for cancer if they had the test any earlier. She did say that other scans could be done after 6 weeks like a catscan or an MRI. She also thought the GI doctor should do another endoscopy some time in that 3 month period to assess the size or existence of the tumor. But she said the surgery would not be done for at least 3 more months (if it is needed) because Louise would need to be full strength for the surgery. She emphasized how difficult this surgery is and how many risks there are and she is really hoping it won't be necessary. We were very pleased to know that Louise would be able to go through Thanksgiving and Christmas without surgery to ruin it. It would more likely be the end of January. I asked how safe it was to go that long without chemo. She said that the effects of the chemo and radiation would go well into the 3 month waiting period and this type of cancer was not a particularly fast growing. We should not worry about that at all.
So that is kind of our new schedule to look at. This Thursday will be the last day of radiation and chemo and I would also think she would not need to be hydrated 3 times a week either. We look so forward to this "vacation" period coming up where she can now totally recover from fire and poison she has so courageously endured.
Let me give you my "caregiver" view of her present state. She endured almost 5 weeks with mild effects of the treatment. Saturdays were always tough days for her but Sundays would get better. In the last two weeks, Fridays were tough days and she'd hit the worst time on Saturday evenings and nights. Last Saturday night she was up feeling crummy most of the night. She has been really zapped of energy most of the days now. Almost two weeks ago I think the radiation (that does hit part of her upper stomach) and the chemo did a job on her stomach lining and peristaltic muscles that move the food along. If she put any amount of food in the stomach she would get violently nauseated and would throw up. The doctors ordered a pump for her that would take her carnation calorie formula and would drip it into her system at 50 mil per hour for 20 hours per day. Overnight it gives her half of what she needs in a 24 hour period. The slow drip fakes out the stomach so it never feels like it is getting loaded up. This also means she takes almost nothing in orally except water with a little flavoring. With anti-nausea pills and the drip system, she has avoided most nausea for the last 10 days. She is dealing with many other problems though. She still has diarrhea, thrush, a painful esophagus, a gag sensation at swallowing anything and for the last 4 days a new pain in the back right at the level of her tumor. We give her liquid advil in her food tube for that 3 times a day. It does eliminate the pain but the pain comes back every time it wears off. The oncologist assured us that pain was not cancer in the back. She said if the cancer were spreading through the lymph and blood it would be too much of a coincidence that it would loge in the back at the very level of the tumor. She felt like it was more likely to be from the effects of radiation on back tissue since that was where the radiation was aiming.
I know this is getting long so I will quit. I just want to say again how amazing Louise has been through all of this. No one really knows but her how miserable it has been for her. How would you like to have double or triple flu for 7 weeks and be tethered to a pole and bag of formula for so many weeks. How much she wants to bite into the chicken and jello that the Barnetts brought us tonight but can't even try a morsel. But she just goes on enduring with hardly a complaint. I love her so very much. It has taken a lot out of me to see her suffer like she has. Sometimes I lay by her side and don't sleep. I just watch her enduring and worry about her next run to the bathroom. But she smiles and tries to reassure me as well as possible.
Thanks again to all of you who have flown in and stayed with us and done so much for us physically and emotionally. Thanks to so many who have brought so many meals we can't keep up with them all. Brady was bemoaning all the weight he has put on lately because of these meals. Thanks for so you that have taken her to therapy each day. Thanks for the many wonderful visits. You all have won a place in heaven for your love and thoughtfulness. Love to all, Spence