Blog Update Sunday, August 27, 2006
Dear friends,
I am writing this from High Calling, the cabin we have been given to use this week north of Steamboat, CO. Greg had been trying to find a place to get away, to do some writing, and this came open a few weeks ago unexpectedly after all other options had fallen through. Jesse and Jenni are home taking care of themselves, but have many friends watching out for them. Laura flew back to
I think I told you I was going to the radiation oncologist on Tuesday with my friend Janet. She drove which was a blessing as this third cycle, it took me about 9-10 days to feel like I had strength to do much. My last Neupugen shot was on Monday evening, so Tuesday I had a lot of hip and back pain. (Since that is where the Neupugen is making the extra white cells grow, that is where most of the pain is centered.) My neck has been swollen and sore from that too.
Radiation
We were surprised about my meeting with Dr. Westmacott. I think he asked more questions about my medical history than any doctor I have ever met. He seems to be very caring and also knows his stuff. He said that if I had gone in to him to talk about radiation the first time I had cancer, they probably wouldn’t have done it. My tumors that time were smaller than 5 cm’s even though they added up to over 5 cm’s. Since all of my nodes were negative the first time and I didn’t have a tumor 5 cm’s or bigger, I would probably not have been a candidate.
Here is what he told us. I will have 2 more appointments to set up the radiation preparation. One is to do a “simulation” which includes a CT scan, X-ray, and have measurements taken to determine where exactly (angles and amount, etc.) to radiate. The other appointment is to do a dry run to make sure it all is actually working as planned. Then shortly after that, radiation will begin. I will go 30 times over 6 weeks, 5 days a week. It will take 10-15 minutes each time for what he called doing “4 fields” and I will go the same time every day, time to be determined later. It is a half hour drive each way. This is supposed to begin 3 weeks after my last chemo on Sept. 26th. Rather than start at the 3 week mark, he is giving me an extra 1 ½ weeks so that Jenni and I are able to go visit colleges together over her fall break, October 21-29. I am hoping this will work out at this point. So my six weeks is scheduled to start October 30th and end Dec. 8th. One encouraging thing he said was that besides my cancer, I am basically a healthy person. That is unusual for his patients as they usually have other big things going on.
He listed the risks for us. Since I am starting after just finishing chemotherapy, I can expect to be starting tired and to get progressively more tired. There is major risk that my skin will get irritated and break down in that area. My ribs might be weak on the left afterward. There is some risk to my left lung (part of it will be in the radiation field) and heart, although they will try to avoid my heart in the radiation field. Lymphodema (arm swelling due to lymphatic fluid getting trapped in your arm because of disrupted drainage pathways from surgery or scar tissue) risk will be greatly increased since they took 19 nodes out from under my left arm 7 years ago. He thought this would probably have at least a 20-30% chance of happening a year or 2 after radiation and is my most real long term concern. My left side reconstruction will probably survive, but could get fibrous and change. I would see Dr. Westmacott weekly during radiation so he can see how I am doing and to check my skin. Each treatment co-pay is $40, but as of October 1st, our new year of co-pay money (which many of you have generously given toward) will kick in.
How to pray
I have to say that each time I do chemo, I am taking longer to bounce back. The dinners have been a God-send. They have been wonderful, creative and a blessing. This time I started to get back to doing things on the 9th or 10th day. Last time it was the 7th day. My white count was up to 7.2 a week after this time. That was very good, so I didn’t have to have blood drawn on Friday this week. I have had some low or high levels of other things in my blood, but am basically doing OK. Right now I am beginning to feel the long term effects of the Taxitere chemotherapy begin to happen. Neuropathy (nerve damage in the extremities) is the main one. I am having aches in my arms and legs and tingling in hands and feet. They listed numbness and pain also for some people. We can pray that mine is minimal. Dr. Bourg said it would be worse the 2 months after chemo, which will overlap with my radiation, and usually is gone by 18 months to 2 years later.
I am in full chemo induced menopause now and am having dozens of hot flashes daily. Still headaches, but they are controllable with medicine. The radiation oncologist looked to see if my fingernails were black yet, as many have that as a Taxitere side effect. Mine haven’t done this yet, and let’s pray they don’t! I have 9 days until my 4th chemo on Sept. 5th, then 3 weeks for my last one on Sept. 26th. So just over 7 weeks to go of chemo out of 15. Pray that I would hang in there and be able to tolerate the accumulating effects of these on my body. God is merciful and I have all of you praying for me. Some days and nights it is hard, but so far we are making it. I really want to do all 5 chemos as that will give me the best chance of no recurrence. Several have shared that the Lord has told them I will be free of cancer. Amen to that! Pray that I would stay healthy. Anything could be a significant problem if I get sick.
This morning we went to a little country church up here in Hahn’s Peak (Rilla says Hi to whoever knows her). It is really beautiful here. Greg’s book re-write is going well and he is getting a lot done. I am resting and getting a little done. Greg went for a hike this afternoon and I took a nap. It is raining now, so he should be back soon. Pray that I would do some of the thinking I have needed peace and quiet to do. This is the place for it.
God bless you and thank you for all of your love and support-
Nancy
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