Hope for the Tired and Weary
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- This topic has 15 replies, 6 voices, and was last updated 14 years, 10 months ago by marylloyd.
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January 12, 2010 at 5:01 pm #34364marylloydSpectator
We couldn’t get into Pa until the 25 th. They don’t have clinic on the 18th due to the holiday so will let everyone know what the news is then. Tom’s cleaning today- I’m supervising. There is one room in our house, basically his, that I refuse to clean. Too much “stuff” piled around. I like my bedrooms to be sparsely decorated so they are easy to clean. No piles of books, magazines, clothes etc. We have a big old house so the upstairs is always hard to get to. I’m lucky to keep up with the main floor ecspecially certain times of the year. Take care all, Mary
January 11, 2010 at 11:38 pm #34363marionsModeratorMary….ha, ha. I like the comparison to Cambodia and cell phone usage. I suppose we have to wait for a major housecleaning day to hear from you.
Can’t wait to hear about Tom’s visit, though.
As always,
best of wishes
MarionJanuary 11, 2010 at 6:24 pm #34362lainySpectatorWow, Mary, you sound like me. Good luck in PA. I will be waiting with bated breath to hear what they have to say….
January 11, 2010 at 4:30 pm #34361marylloydSpectatorHa! Thanks Marion,
My problem is we have the worst internet service in the world here in Podunk, Ohio. WE are in a “dead” zone and it literally takes 1/2 an hour sometimes just to get on my e-mail. My son was in Cambodia last year and said they had better service than us. SO I generally get so tired of waiting , I do a load of laundry, vacuum etc, while waiting for things to pop up that I just give up and shut the whole thing down!! Eventually we’ll be brought into the 21 century.
Dad’s Daughter.
I’m glad you’re feeling better about things. I hope all goes well.
Lainy,
You mean we’re actually supposed to get care too?! I am very negligent- I need to get things scheduled for Spring. I need knee surgery someday but can’t imagine when I can handle being disabled. Tom says he’ll take care of me but.. he doesn’t realize all I do and I really can’t handle not doing or having things done my way. I was really sick for a week in Nov (all because of an abcessed tooth) and it drove me crazy. It gave me new found respect for everyone dealing with all of these serious health issues ( including you) every hour of every day.Take care of yourself!! We’re going to head to Pa to see if they can figure out Tom’s puzzle in a few days. MaryJanuary 11, 2010 at 2:14 am #34360lainySpectatorHi Dad’s Daughter. Well it sounds like you had a very successful day and it pleases me very much. Good girl, you are on all the right tracks!!
January 11, 2010 at 1:54 am #34359lovemymomadSpectatorHi Dad’s Daughter,
I just wanted you to know that we went to Cleveland Clinic for my mother to originally meet with Dr. Pelley. We decided to meet with another doctor at the Clinic so that we could get in a little quicker. We did not have a good experience. He simply told us there was nothing he could do to help us. Very discouraging to my mother and just a waste of time. This doesn’t mean that you would have the same outcome, but I just felt I needed to share. We ended up sticking with her surgeon and local oncologist for treatment and they were wonderful. I heard that UH has some fantastic doctors for this area of cancer as well. We did talk to her oncologist and surgeon as well, with my mom’s permission of course. They really included us kids with treatment options, etc.Best of luck to you, your family and your dad. It is wonderful that he has such a caring daughter. Take care of yourself.
LoveMyMom
January 11, 2010 at 1:29 am #34358marionsModeratordads daughter…I believe that nothing beats good communication. It appears that everyone is on the same page and more good decisions will come about.
Best wishes,
MarionJanuary 10, 2010 at 10:38 pm #34357dads-daughterSpectatorLainy,
I hear you!!! I have a couple of people on my staff that run to the urgent care, emergency room, doctor for every little thing. It’s enough to keep up with well visits, strepp throat, etc. for the kids. I, too, have been putting off doctor’s appts. I am about six months over due for my annual female stuff and mammogram. But, it’s important we take care of ourselves, too.January 10, 2010 at 10:30 pm #34356dads-daughterSpectatorThank you all so much! I actually went over to my parents this morning and spent several hours with them. I was really worried when I saw him on Saturday, but he seemed much more like himself today. I shared with him some of my findings and suggested he get a second opinion. He, my brother and my dad’s PC (who is a good friend of my brother) all agree that he should start chemo on Thursday. I did find out that he is going to get both the Gemzar and Cisplatin. My mom had thought he was only getting the Cisplatin. I told him that I wanted to support him in any way he needed it. I was so very encouraged after we had the open discussion. I told him I would try not to meddle but from time to time if I came across something I would let him know. He said he knows it’s going to be a gruling 12 weeks, but he is ready for the fight. He has his eyes on making it to next Christmas:-) He’ll set a new goal after that. I still wish he would consider a second opinion and will tell him about the doctor’s at OSU that Mary mentioned. You are all wonderful people and I am so glad I found this web site. All the bests to everyone. Will keep everyone here in my prayers.
January 10, 2010 at 8:30 pm #34355marionsModeratorMary….I just love it when you are dragged out of obscurity.
Best wishes,
MarionJanuary 10, 2010 at 7:50 pm #34354gavinModeratorHi Dads daughter,
Welcome to the site, although I am sorry that you have to be here. Please don’t feel guilty about anything as it sounds to me like you are doing a great job in caring for your dad and looking at possible treatment options. I was my dads carer during his fight with CC so I know what you are going through.
I can’t help you with anything chemo related as my dad never got chemo, but I just wanted to join in with the others in wlecoming you here. I hope you will keep coming back here as you will get loads of support and help.
My best wishes to you and your dad.
Gavin
January 10, 2010 at 4:10 pm #34353lainySpectatorMary, Tom and Teddy sound like twins! Teddy is an amazing patient and I do the appointments, Insurance wars, getting results etc, etc. Sometimes I just put off my own medical stuff just to not talk to one more doctor or have one more appointment, know what I mean? We have had sinus problems all week and my girlfriend keeps telling me to go to Urgent Care and I say, No, no more doctors of any kind for awhile. She is healthy in every way but every day she has a different medical problem! Every day. I find myself getting a tad resentful. Like why don’t you just enjoy your life, you are so lucky! Sorry, I didn’t expect to go on like that. GO PACKERS GO TODAY!!!!
January 10, 2010 at 3:36 pm #34352marylloydSpectatorDad’s Daughter,
My husband has had treatment at OSU under Dr. Bloomston and Saab. We have been very happy with their care and I actually credit them with saving his life thus far because of their unconventional treatment of him. I know for a fact that he would probably not be here now if he had gone to Cleveland or Pittsburgh for his initial treatment simply because they would have given him chemo only which will not cure this cancer. At OSU they gave him agressive radiation therapy that I have never seen listed as a treatment other than at Mayo as part of their protocol prior to liver transplant. That being said many patients have had care at the Clinic and are very happy and satisfied and we have and are going to Pittsburgh (UPMC) for a second opinion. I think second and third opinions are incredibly important in order to make the best decision about your care. MY opinion is that you need to go to teaching and research facilities because the DRs are going to be up on the latest treatments and they will have the most updated equipment etc. I wish your Dad the best and you are doing a great job!! I hope everyone will open up and discuss all of the options available. I have been very lucky the past 3 1/2 years because my husband has always been a very willing patient. He lets me do the research, make appointments etc and just goes along with me. It’s a lot harder as the daughter but don’t give up hope. Let us know if we can help in any way. MaryJanuary 10, 2010 at 2:48 am #34351dads-daughterSpectatorThank you, Lainy, for your suggestions.
January 10, 2010 at 2:42 am #34350lainySpectatorHello Dad’s daughter and welcome to the Family. First of all please don’t feel guilty for thinking that you did not research enough or that your dad was in the clear. These are such normal reactions. I would make a suggestion that since your brother is a doctor that you have a family meeting. Ask your dad what he wants and if he wants you to continue on searching and making further contacts tell him you will be glad to do it. Its so very important to get everyone on the same page. Also, you don’t have to do a lot of chasing to get other opinions, you can Fax a doctor your dad’s test results and they do get back to you. If your brother refuses to still discuss this then you need your dad’s permission in writing. Mayo Clinic in Rochester MN is one of the best for CC. You can fax them the records and they will get back to you. Please don’t waste your valuable energy on guilt, you will need it instead to make decisions and to stay strong.
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