Postby Christylyn » Sat May 25, 2013 12:27 pm
Jaynee.
Thank you so much for taking the time to give me a better explanation. I swear...I have always considered myself (and my hubby) to be intelligent, capable and on the ball. Right now we're both feeling like two ding dongs floating without a raft. There's just so much to try to comprehend and remember! If I didn't have this board to come to for help I think I really might lose my mind! We're both at the point of exhaustion and things really haven't even gotten started!!!
Yes, we are hearing ALL of our info from the medical oncologist and the radiation oncologist. We have not yet seen the surgeon (Delano) that they've referred us to. Question regarding the surgeon....Since he is not currently board certified, am I out of line asking his office if he is in the process of certification? I don't want to ruffle feathers, but I also want to be sure my husband is receiving the best care we can obtain. It concerns me a bit that we've been referred to someone who isn't board certified.I'm going to refer back to the link you shared and see who else is in our area. The med. oncologist did say 6 weeks off before surgery and that's the same window the surgeon at MD Anderson gave us. The Anderson surgeon did say that it also depends on where he's at as far as recovering from the radiation before they actually schedule the surgery. She then flip flopped and said no radiation or chemo prior and she wanted to go straight to surgery. I am much more comfortable with the chemo and radiation prior as everything I read and have been told tells us that this will give hi the best possible outcome.
Since you have been down this road, too I wonder if you can tell us what to expect once he starts the Xeloda and the radiation? All the oncologists have told us is that he may have some diarrhea, which he should take Immodium for and that he will probably see increased fatigue and possibly some low level nausea. He is already experiencing pretty significant fatigue, so worsening would really knock him off his feet. How long does that last after you've completed the therapies? The doc's office recommended that he make major dietary changes to include the most nutrients he can in every bit of food he eats. (He has pretty intense loss of appetite and has lost a good amount of weight already.) They also want him to pack in the protein however he can so I am now including a protein powder in his smoothies every morning and evening. I'm worrying about him losing his appetite more as well as taste changes and how to get the right things into him to keep him as healthy as possible thru this. They also mentioned using lotion on his hands and feet several times each day whether he thinks he needs it or not because of skin changes that take place. Not sure if that's from the radiation or the pills, tho. I'm reading from other posts that people experience a lot of discomfort from burns from the radiation and would like to be prepared to make sure he's comfortable in that respect. I'm thinking how miserable a sunburn on my shoulders and legs is in the summer time and then imagining how much worse that must be if it's in the rear end area. I just can't even imagine.
On the prescription help from the Xeloda manufacturer....The pharm tech who called did go over that. Unfortunately, they go by your last income tax return and I was still working full time as well as getting commissions then and hubby part time, so we don't meet the income requirement. Of course, our CURRENT income in nowhere near that. We are fortunate that we have some money saved for retirement and can tap into that, but judging by the bills that are already rolling in....well, that money isn't going to last long and then we're looking at the remainder of our retirement years with little or no savings. I was hopeful that we could make monthly payments on much of this but am finding that every time they schedule a test or anything the hospital is calling in advance to obtain his 20% copay. While they've been relatively small co-pays thus far-----yesterday's ultrasound was $37.00---it adds up fast! Xeloda does have another program, too but you aren't eligible of you have Medicare. I'm just thankful that we had the money to pay for it and he will have it now and hopefully the infusion chemo after surgery will be covered, too. I'm really worrying about that.
I know I keep saying this over and over to everyone, but I just can't express how much I appreciate the time you're taking to help walk us thru this. I feel at times like we have no real support at all even tho we do have friends and family who are doing their best to help us. They don't understand and I'm careful how much I say about everything with most of them. While they are all well meaning, we have been starting each day fielding 15 phone calls from the assorted family members or friends who want to know what's going on and what we've found out. The constant talking abut it and answering questions just feels like a burden right now. I know I should not feel that way and should be grateful we have people who love us and want to be there for us, but it feels like one more overwhelming task right now to talk to everyone and keep everyone filled in constantly. There's no "down time" for us where we can just NOT think about cancer, if that makes sense? I've always been "The Strong One" on my side of the family and he is the same for his side. People expect us to handle this the same way we do everything else. I'm not feeling at all strong, tho. I'm feeling instead like I just want to curl up and cry most of the time. I'm holding back tears every time people start questioning me and yet no one seems to see that and know I need a break from talking about it non stop. Yesterday I was at the pharmacy picking up an antibiotic for my 8 year old and the pharmacist gave it to me, then reached his hand over and placed it on top of mine. He said, "I just want you to know that we're keeping you all in our prayers and if I can help in any way, just ask." Just that simple act of compassion from someone who I really only know because he doles out our medicine now and then was enough to send me into a burst of tears right there. What I'm wishing is that one of those friends or family would call my husband and forget he is now a "Cancer Patient" and instead would just say, "Hey, wanna go fishing?" I'm wishing they would call me and just say, "Hey, let's go shopping and have lunch today." I wish they'd call and offer to take our little girl to do something fun for the day instead of trekking along with mom and dad to this doctor or that doctor or to the hospital for this test or that test. Instead, they're calling and keeping us both continually focused on cancer and sickness and all of the what if's and I hope not's and all of that. How do you refocus that? How do you let them all know that although you appreciate their concern and you know they're all trying to help, what they're really doing is making it harder??? Is it way out of line to just say, "Hey, you know what would really help us out? If we could just talk about anything on earth EXCEPT living wills and chemo side effects and whether or not my hubby is going to be able to walk down the stairs every morning and out the door to feed horses or shovel manure and what we're going to do if he can't? Can we not talk about how you read that radiation may cause him to lose sexual function? Can we forget that you heard from a friend that his diarrhea will be so bad he won't be able to leave the house? Can we just stop sending him the emails about some 'Miracle Cure' that you found on the internet and how he should try it before he decides to do what his doctors are advising?" I'm sorry for the little rant. This has just all been building inside me and I'm reaching my breaking point, I guess. I don't want to offend family or friends and so I feel like I can't say what I want to say. Everyone here has been there and I know you all understand and am hoping you can give me some advice on that, too. I just want life to be as normal for us as it can be, especially for our little one and for my hubby. I will continue to stand int he shower and cry or go for a walk in the woods and throw rocks at tree's and cuss at twigs and sticks but I know I am fast reaching the point where I am going to lose it when someone says something to my husband or kids that cause them to be more worried. There has to be a "good" way to handle that!