Yes - this is the the most difficult time of all. The radiation continues it work for several weeks post treatment so it is no surprise that she is still on a downward spiral. The good news is that she is right at the turning point. Remember that progress is measured in three week increments at this points - in other words verrrry slow. It takes much patience to get to the other side. This is also when depression most commonly sets in.

The mucous thing should resolve pretty quickly.
Some people have had some luck with various decongestents.

She has to eat - she needs nutrition for faster healing. I had to force myself to eat. She'll feel especially crummy if she gets dehydrated also.

Tami, I totally agree with Gary. My father had hit another wall with feeling awful. He almost didn't get his last chemo so they hydrated him in the hospital and he was a new man. So much that he was eager to get his last chemo. It is amazing seeing the change in him when he gets his fluids. In fact, today he just went in to get a liter infused for the heck of it. He feels so good, which is a blessing considering he has ONE MORE radiation tomorrow!! Honey, I'm very concerned about your mom's nutrition/hydration. Does her insurance cover home care? They can come out to her and infuse. She will feel physically better for sure.

Thanks for the replies.....
Prior to discharge I faxed the doctor a letter of things I would like in place for my Moms care at home: I asked for a script for the feeding pump (slow drip). It worked well in the hospital vs. the gravity seringe method. I also asked for a visiting nurse for the first few weeks. The doctor approved and the nurse went to set it up and she denied both of them. I also asked for a referral to a psychologist which I beleive she also refused. This of course was very frustrating. But due to your story with your dad and how well he felt with the iv fluids I will revisit this topic with her today. As far as depression goes.....it is so hard to determine if it is setting in when we are 600 miles apart. She also told me that her 100 mg of fentanyl expired on saturday and they (her and her husband) did not realize it until yesterday. That obviously may have alot to do with her feeling crummier than ever. Oh how frustrating it is to have her so sick and be so far apart. All of the family is in NY. Her husband is the only one in TX with her. I can't be there more since I have 2 small kids and a husband that works 70 hours a week. Very very frustrating!
Tami

Tami, it appears that you are very invested in your mom's well being. (I can relate) Can you bring your kids down there temporarily? Do you have other family where you live that could maybe stay with them? I stopped my life to help my dad. I was so scared-in fact, I took an unpaid FMLA leave. My hubby and I have made it and now my dad is DONE. A temporary glitch in life could work out. Of course, I don't know your situation at all, I'm just throwing things out there. Your mom's non-compliance is a definite barrier to survival and recouperation. I am so sorry, I could not imagine going through this. Would she come to you?? I brought my dad kicking and screaming to my place--Uggggh, poor thing.

Well Mom seems to making some progress this week. She is up and about. She actually drove herself to Walmart this week. (I was not happy about this decision while still being on pain meds). She sounds better and her voice is coming back but she is only eating 2 cans of that nutrition drink a day. She still has no appetite. My Aunt is flying in to see her this weekend and will spend 5 days there. This should help with her spirits.

Yesterday she had told me on the phone that if she has a reoccurence she will not treat it. I don't know if she could have any further IMRT anyway (37 at 165 gy). But this decision of hers makes me feel stronger about getting her to MD Anderson for a consult on a modified neck disection to remove the nodes. Just as an added insurance policy. She is only 59 and was so full of life prior to the cancer treatment. This is so unbeleivable that she has already made the decision to not to treat any reoccurence. I anticipated that she would feel this way but it was not good to actually hear her say it. I know she has gone through living hell this summer and I can't judge her decision since I have not walked in her shoes. I just don't like it from a selfish stand point. She is my kids only Grandmother. (Both of my husbands parents have passed). I wish I could go there (TX) more often but my oldest daughter is in 2nd grade and I can't just pull her out of school. Ideally I am hoping she will move back to NY but I am not going to talk to her about this until she is stronger. (mentally & physically). Right now we are just playing the waiting game for the scan.

Gary-she does recall getting a CT after beginning IMRT but she does not beleive it was at the half way point. I will be calling the RAD doc today. Unforunately he never returns my calls.

Has anyone had an ultrasound on their corrated artery after having rad? To rule out any blockage?

Tami

Tami,

I know many at this point in treatment that have vowed to not go through any more treatment for a recurrence. As a matter of fact, many people (myself included) were adamant that they would never go through radiation. Yet, when you hear a doctor lay it on the line and tell you the alternatives, staying on this side of the grass suddenly becomes your driving force in life.

I am glad your mom went to Wal Mart. I know she shouldn't be driving with the narcotics but she is taking a step to gain some control in her life. This is a good sign.

I had some issues from the end of treatment and even still experience some of it. When I stand up or I use my muscles to urinate, I see a white flash. I used to pass out at this point. (Excuse me for being so graphically gross.) The doctors did the ultrasound on both carotid arteries and there was no blockage.

I also had a bone scan only to find out I had developed arthritis in my hip and shoulder and had 2 broken ribs from falling when I passed out or the car wreck...I guess that's another couple of stories for later.

I know this must be terribly rough to be so far away and only get the glimpses of the extremes. Hang in there and work towards getting your mother back in control of her life. She will benefit immensely and the side-effect is that you will rest easier.

Ed

Hi-
Just had a question....Mom's blood pressure started getting low again since the weekend. (68/47) She didnt have a very good day yesterday. Started vomiting again.... Here we are almost 4 weeks out from chemo/imrt. Is this normal? Is the blood pressure dropping again from the effects of the chemo? The weird part is that she normally had high bp since she was in her late 30's (now 59) and was on bp meds until she started her cancer treatment. I asked her to call her dr. and get an appointment today. She has one schedule with the chemo dr for a checkup on wed but I don't want her to wait. Let me kow your thoughts please. Thanks!
Tami