I received this last night; I don't think Mary will mind my posting it.
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to friends and family;
Gosh, I cannot believe that my last update was February 27th. It doesn't seem that long ago. Yet, today feels like we have been doing this for many months already. I left off where Joe had an allergic reaction to the Taxol chemo medicine on his first treatment. That was Monday February 25th. To refresh the memory, he was to have Chemo once a week on Mondays and Radiation 5 days a week. All this for 6 weeks. Next week starting March 31st would be week 6. There had been some problems getting to this point.
I had said before that maybe my updates would not be so often if all went well. All has not gone so well. You may remember me describing Joe's first allergic reaction to the Chemo and how it was all new to him and can be a bit frightening. He has gotten to recognize it coming on now.
Chemo is once a week on Mondays. 1st treatment he had allergic reaction to Taxol and so they finished with the Carbo.
2nd Treatment he was given the Carbo and Taxotere and all went well.
The 3rd Treatment was delayed a week as he was in the hospital. He had his 3rd treatment on March 17th and he had an allergic reaction to Taxotere. They thought they could probably still give it to him.
For his 4th treatment on 24th he was again given Carbo and Taxotere. Another allergic reaction. Now they will give him something different on his 5th treatment on March 31st. That should have originally been the last treatment in this series of six..
The Oncologist has indicated they will be giving him more treatments of Chemo.
Joe feels that when he is sick that it is more the radiation than the chemo. The nurses at the Chemo say they always get blamed for everything. Joe has a sheet of possible side effects to the radiation. I tend to agree it is the radiation. Radiation people don't think so. I had so hoped Joe would not have been bothered much by any of this. Didn't turn out to be the case. Joe had bad coughing for quite a while and now rare. We understand that had to do with the affect the radiation was having on the tumor in a positive way. I hope that is right. I am less trusting than I was before, now.
He has had some days that he was really not feeling well. Only had a few felt like doing something, One week almost no sleep. Never sleep on Monday nights due to all the other meds given to do Chemo.. Quite a number of various side effects he has had. A few causing some real problems. Many that you could get and don't want.
Joe has been to the Dr twice for unexpected appointments due to problems. One was on Thurs March 6th and followed on Sunday the 9th by calling the 'on call' doctor and told to go to ER. Was admitted in hospital until late Tuesday. He looked and felt much better when he got home but not long and all starts again. This is an awful disease. They did a CTScan in the hospital and Joe was told that tumor was shrinking.
I didn't feel very well on the 6th and Joe's sister had to come across town and take him to the doctor. He drives himself almost everyday no matter how he feels, but this day he couldn't. I just couldn't that day. Emotions were probably at the highest by Sunday on the 9th. I had no idea how rough this journey can be and I am not even the patient. My heart goes out to anyone going thru this.
I am not sure about Joe but I am getting mixed messages. Our son, Don, was here for a couple weeks. Hi Don (Wave) (he receives this too). He did go with Joe to one appointment with the Oncologist. Both Don and Joe felt good about the doctor. I couldn't tell on our first visit and so was glad to hear that.
The Radiology Dr sees Joe once a week. This week he was very encouraging and saying how the tumor was shrinking and the radiation was doing its job. That was nice to hear and sounding good. Joe sounded good telling me that.
The plan from the beginning was to try to deal with the tumor and the 2 lymph nodes and then 'possible' surgery. Joe saw Oncology Dr Thursday and I just didn't think I needed to go to that one. In hindsight, I should have gone. Joe came home with negative outlook and that didn't make a lot of sense. He said it should have been caught earlier. Talked like probably couldn't do surgery. That was contrary from first visit.
I didn't see anything to change the plan yet. I am not sure where we are at. One day it sounded good and the next day gloomy. What has me most confused at this point is this good news/bad news. Not really good and bad but clearly opposite sounding. Maybe could say encouraging and not so encouraging. I don't know what to think.
Next Week he has a Pet Scan set for Tues, Get CT-Scan and see surgeon on Wed, See Oncology Dr again on Thurs and the Pulmonary Dr. on Fri. He was talking about canceling the Pulmonary one. I plan to attend the 3 Dr appointments with him.
The Oncology office set up the Pet Scan appointment. The girl told me Friday that the timing is not normal and generally do not do till about 2 weeks after chemo and Joe is still doing Chemo. I am not sure it will happen now. She was calling the Drs office and get back to us. The Pet Scan involves prep from Sunday on and bummer because didn't hear back. You have to ear very low carb diet with lots of things cannot eat. She said they usually let the Chemo take more affect and Joe hardly had any?? We went thru this stuff before with 'he said, she said'. GRRRRRR. These are the times that really get frustrating.
I thought COPD was mindboggling but it doesn't come close to cancer. It is still early on but already I keep getting different stories. I do know 'everyone is different' and no 2 cases are alike. There are survivors even when doctors say no. Odds might not be so good though. Joe was fairly healthy going into this.
'They' set up an appointment for Joe to see the surgeon. I know this doctor visit thursday did not do his morale any good. I know too that he was not feeling good when he went to the Doctor. They did give him IV and shots. Maybe that is what caused some of it. Joe just came home sounding so discouraging from Oncologist and yet came home showing 'hope' when he saw the radiologist the day before.
I am learning about the 'waiting game' which I still do not do well. I hope all these tests do not end up being told about over the phone when they get their results. I would like to think the Surgeon would have the Pet Scan to see what happened with the lymph nodes. Maybe there is another point to the appointment.. I hear things and then don't understand the scheduling.
This gets so crazy. I didn't mean for it to be so long but you know me. Just figure you have not been getting all those shorter emails from me. Actually, most of you on this list get 'no emails' from me, or you get 'long emails' from me.
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No where have I found good answers. I don't even know some days what to say or not to say. As you would expect our emotions probably are all over the place and probably each trying to protect the other. I feel so bad not being able to do more. The way I put some of my wording is because I am writing to a mix of friends and family.
Thanks for all the prayers and please keep praying. I will update when something significant to say or a period of time goes by."
to friends and family;
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