Posted by Deanna on 1/1/2009, 9:09 pm
99.249.237.249
Hi there. I've never posted in this area before, I've always asked my questions on the survivor site, but I'm slowly changing positions in this disease it seems. For the past 6 years that mom has been living with cancer I was trying to learn all that I could to fight it with/for her. I now need to change hats and figure out how to cope as her daughter, who loves her so very much and is scared to death of losing her, cuz what I've come to realize is that I have no control over any of this, she is living her life and I have to live mine. I have tried hard to get my mom to come here and post on the recurrence boards and learn about this disease and maybe even develop friendships, but she says is not computer savvy enough. The last year has been really up and down. This is mom's story: 2003 (at age 54)first diagnosed stage 2, left breast but mom opted for bilateral mast, did FEC chemo for 6 cycles. 2006 recurrence to superclavicular lymph node, given 30 rads. 2007 mets to lungs, diagnosed by pleural effusion left side (approx 1/2 of lung but never drained), given 2 cycles taxotere/xeloda, neutrapenic after 2 so switched to taxotere/gemzar for 6 more cycles, at which time the cancer was no longer responding but mom was feeling good so had a chemo break, the pleural effusion had decreased to about 1/3. 4 months later mom became short of breath again, with full pleural effusion left side, drained, and a pleurex catheter inserted. Drained approx 4 litres in 3 weeks, then stopped draining. ?spontaneous pleurodesis happened, but there was 1/3 still there, called loculated at bottom of left lung, and its not able to be removed. Oct 2008, ++ pain and continued shortness of breath, thought it was from the pleurex so it was removed, but turned out mom had mets to bone. started on MS Contin and Dilaudid (Morphine) for the pain. She was also started on xeloda (chemo), is currently on her 3rd cycle. Mom was admitted to hospital on Tuesday as the shortness of breath was getting so bad that she was having difficulty even walking 10 feet without struggling to breathe. She has also lost about 45lbs since October, and has difficulty eating because she always feels full. The bone mets are on spine and skull and left ribcage. They told us yesterday there is a bit of fluid in the right lung, but not enough to drain. The left looks unchanged but has a thick lining and about 1/3 loculated fluid. The respirologist also said that there is something showing on the rt lung (?infection, ?PCP fungus, or more cancer). They started her on the antibiotics but warned they may be difficult on her digestive system and cause further weight loss. This worries me of course. They also did a CT scan which they said shows some improvement in both lungs from 2 months ago, which they said means that the chemo is starting to work. The Dr said they would expect mom to be feeling better, not worse by these positive changes, but instead mom seems to be getting weaker, more short of breath and continues to lose weight each day. Mom is also starting to get very anxious and panicky. She had a full panic attack yesterday when she couldn't catch her breath which just made everything worse. It took nearly 30 minutes to calm her down and I had to place an ativan tablet under her tongue to help her. My mom has changed so much recently also, she has given total control over to my dad, he is responsible for making sure she eats, he gives her all her meds and keeps track of all the times etc. This is a complete role reversal, for 38 years mom has always been the one in control, dad was always submissive and rarely took care of himself, and never was expected to take care of mom. This has been a huge change. He seems happy with this new responsibility, but I can't help but wonder if mom giving up all this control if that is helpful or a hinderance. I have noticed that mom seems unable to cope or calm herself in a panic and dad can't either. Dad has told me that this frightens him and he doesn't know what to do. He usually calls me, but I worry that I may not be home or able to get there to help. I am feeling very overwhelmed and helpless at times, and getting frustrated too, I don't want to feel that way. I love my parents dearly, I hate this disease and I want life to be about anything other than this cancer all the time. I don't know how to explain that to my mom or if I even should. My New Years resolution is to stop trying to get mom to do what I want. I've been so focused on her eating and weight loss, I've offered suggestions to increase calories but she isn't taking any of the advice. I've offered advice on how to ward off, and prevent some of the anxiety but she doesn't seem to be taking in that advice either. I don't want to get angry or frustrated with her. I know this must be hell for her. Is there anything I can do though that is helpful for her, my dad and for me. Any advice would be appreciated. Sorry this post is so long, since its the first time I've ever posted here I thought I better provide some background. Thanks for reading
Deanna
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