KatieB Posted August 26, 2003 Share Posted August 26, 2003 Mom calls me today very concerned that Dad can hardly walk. You might remember my post about dad (chemo + Radiation) has made it almost impossible for him to walk unassisted anymore. Up until now, he has taken care of all his personal hygene and personal business, walked all in their house, walked from house to car...then we used the wheelchair whenever we went long distances... Now, he can barely make it to the sitting position or to the bathroom...and today...he didn't make it. I left work early and went to see dad. He is SO weak and SO tired and discouraged, but he'd never let on. His mind is STRONG and he seems so "well" if you were only to talk to him. The decision was made to get a portable potty and some Depends. I also bought those stocking-things that keep the blood in your legs circulating and prevent blood clots for folks who are inactive or bed-ridden. Dad also asked me to buy sausages and make biscuits and gravy...for dinner..! So weird...here it is again...he "seems" so well when he opens his mouth in conversation...his body is what is betraying him. I want to know if all this is normal...in the sense of the weakness, inability to care for himself, the Depends, etc.... AND if it is all "normal", has anyone been here and gotten better.... once treatment ended? Of course I hope all this is what he has to go thru to beat this disease, and that there is hope for him to overcome, I just need some expert reassurances from those of you who have been there. LOTs of LOVE, Katie Quote Link to comment Share on other sites More sharing options...
David A Posted August 26, 2003 Share Posted August 26, 2003 Katie, I have no answer to your questions. Just wanted to let you know that I pray daily for your father and family and think of you all often. I'll have some of that sausage and biscuits too, it is hard to find a place that makes it like down south here. Guess I'm just a rebel in yankees clothing. Quote Link to comment Share on other sites More sharing options...
Ann Posted August 26, 2003 Share Posted August 26, 2003 So sorry to hear that your Dad isn't feeling so great! Just want you to know that you and your family are in my prayers. I think what you are experiencing is to be expected. Keep your chin up. I'm sure that your Dad reaps much of his strength and good attitude from you! You're a wonderful daughter and I'm sure your Dad is very proud of you! Quote Link to comment Share on other sites More sharing options...
Debaroo Posted August 26, 2003 Share Posted August 26, 2003 Katie, I don't have any answers, either...but if I were you, I'd call the doctors. Just to be certain that-assuming that it is all from the effects of chemo and radiation-there might be something they can do to help his strength. It is really good that you got the stockings for your dads legs, after Dad had the gamma knife, he was pretty tired and weak and ended up with a HUGE blood clot that went-like a snake-up the vein in his leg, pretty much up the whole calf. He ended up needing a 'filter' put in, through the neck, that would protect his lungs and heart, should the clot have released. He ended up with ANOTHER blood clot in his other leg, and is back to taking a baby asprin every day to help it dissolve. I was going to ask the doctors if we could get those leg brace things that you plug in and they fill with air and then release the air, so that the blood circulates. My mom had them on when she was in the hospital, since she was pretty sedenant after the surgery. I wish I had some insight into how to help your dad, and what is going on. I am just so sorry that he has become so weak, physically. I hope that he ate and ENJOYED the sausage and biscuits, it sounds so delicious. Sending up prayers for your Daddy and you; your whole family. Please try to take care of yourself. We're here for you. Keep us posted as much as you can. Deb Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted August 26, 2003 Share Posted August 26, 2003 Katie I definetly think you should call your dad's doctor and tell them what is going on with his extreme weakness. Do you think he needs a transfusion? I would call them right away and find out what they say about his condition. Bess B Quote Link to comment Share on other sites More sharing options...
LindaMRG Posted August 26, 2003 Share Posted August 26, 2003 Hello Friend, First a (((((((((HUG))))))))))))). When will your dad get a break from treatment? Ask onc if once he gets a break, should some of these symptoms subside. We know that lots of symptoms obtained from chemo/radiation are temporary so why couldnt what your dad is going through be temporary? Always praying for you and Jesse! Quote Link to comment Share on other sites More sharing options...
rayroy Posted August 26, 2003 Share Posted August 26, 2003 Katie I am glad to hear that your Dad is craving food. That is good news. I think getting a comode or depends is a good idea. My dad was like this before, he used depends and he felt better because he didn't have to get himself dirty. It was hard to see Dad like this, but we had to do it. My dad had a large pleural effusion and tumors in many parts of the body but he lived longer than expected. I think your dad is in better shape, eventhough he cant walk to well. I would just give your dad the food he wants and encourage him to eat and to think positive. I pray that he will get better! ray Quote Link to comment Share on other sites More sharing options...
rayroy Posted August 26, 2003 Share Posted August 26, 2003 Katie, I forgot to say that you may look for some clinical trials. My dad may have tried a clinical trial, but his insurance caused a delay so he couldnt do it. Quote Link to comment Share on other sites More sharing options...
Eileen Posted August 26, 2003 Share Posted August 26, 2003 Dear katie----so sorry your Dad is not feeling well---sorry I do not have any answers for you just know you are in my thoughts Eileen Quote Link to comment Share on other sites More sharing options...
Donna G Posted August 26, 2003 Share Posted August 26, 2003 Katie, listen , Connie , who volunteers for the ACS told me just yesterday that you can get equipment from them for as long as you need it for Free Even electric beds!!, ( She had Maurie order one for her to have when she gets home) bedside commodes, etc. You should call your local office and see what they will loan you for your Dad. Donna Quote Link to comment Share on other sites More sharing options...
Candy Posted August 26, 2003 Share Posted August 26, 2003 Hi Katie, First (((((((hugs))))) because you need them and deserve them! Hugh just completed whole head radiation a little over a week ago, and it is the worst thing he has had to deal with since the beginning of this. He is more tired and weaker than he ever was when he had chemo. This morning he fell asleep at the kitchen table, something he hasn't done since he first started chemo. The decadron made him appear and act very drunk. He is down to 1/2 a pill once a day now and that has improved. This morning when we went for our short walk I noticed he was struggling to finish it. I worry a lot that the cancer in other parts of his body has started kicking up again, but maybe it is just the treatment. It really suprised me because radiation SEEMS so simple compared to chemo. We arrived at the hospital for 3:00 and were always walking out by 3:15. I can't believe how badly it made Hugh feel. Lets hope that this lack of energy and overall weakness is just the effects of the radiation! I'm saying extra prayers. Quote Link to comment Share on other sites More sharing options...
Tim'sKathy Posted August 26, 2003 Share Posted August 26, 2003 Katie.. Tim just finished Radiation for brain mets last Tuesday and between the rads and the decadron, like Candy says, it was way worse than the chemo. So if your dad is having both, It is no wonder it is doing a number on him. Hope he feels better soon ....and Katie..make sure you take care of yourself !!!! Kathy Quote Link to comment Share on other sites More sharing options...
tmaizeinlv Posted August 27, 2003 Share Posted August 27, 2003 My mom is having the same problem, and unfortunately for her, it's not good news. However, her radiologist, who deals with this daily, said he has had patients in much worse shape than she is and that if they eat and keep themselves strong with solid food, they have turned around and had one and two year anniversaries, so far! He said he's also had several patients who were weaker than my mom (who can't even raise her feet off the bed so you can put a pillow under them) who have checked into hospice, start eating, and check themselves out and get more treatment. While I can't give you any first-hand experience, I hope the info I got from our radiologist helps. We also got Mom a portable potty and depends and it helped a lot. Unfortunately, she's had other problems and she just won't or can't eat, so our experience is somewhat different. I do know this: the fact that your dad is craving food and eating is HUGE and will give him a chance to keep fighting. You, your family, and your dad are in my thoughts and prayers. Wish I could help more... Terre Quote Link to comment Share on other sites More sharing options...
Spanky Posted August 28, 2003 Share Posted August 28, 2003 Katie; First off hang in there & keep your chin up.....I'm just thinking that going through one of the two treatments, be it chemo or radiation is hard enough on the body so to go through both treatments at once is like a double whammy, it might just take your dad a little longer to come back around with having both treatments at once. Sorry I couldn't be of more help but it's just a thought. Take care & hang tough. Chris Quote Link to comment Share on other sites More sharing options...
Guest Michael Posted August 31, 2003 Share Posted August 31, 2003 I'm so sorry to hear what your going through. Both you and dad have been through so much suffering. Hopefully, your pain and suffering will be short lived. Quote Link to comment Share on other sites More sharing options...
Deanna M. Posted September 1, 2003 Share Posted September 1, 2003 Katie, I have been reading all along about your Dad and just want you to know I have been keeping you guys in my prayers every night. I haven't had much time to post. If I recall correctly, your Dad is on the same chemo as my mom, topetecan and he's on radiation. My mom did fine with carbo and vp-16, just needed some procrit. THis topetecan has thrown her for a loop, blood count wise. Her white blood cell counts were off the charts low, and her hemoglobin is very low too. SHe's getting lots of those shots now. SHe had to go to the doc 3 days in a row to get shots. So I think it's really understandable that your Dad is so weak, especially with the radiation. I hear that radiation really throws the body for a loop. I am praying really hard that he gets better really soon. Quote Link to comment Share on other sites More sharing options...
sophia88 Posted September 2, 2003 Share Posted September 2, 2003 KatieB. I've been gone from posts for awhile due to life throwing me big curves...but know that my prayers are with you and your Dad. Be strong this is one tought fight for all of us..may your Dad gain his strength back soon..take care Katie!!! Sophia Quote Link to comment Share on other sites More sharing options...
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