LindaMRG Posted January 30, 2004 Share Posted January 30, 2004 Sweet Carleen, Im seeing this post many days late, but Im signing off and will be praying for Keith. By now youve been to your appt but prayers are never too late. Im so glad there are these options for him. And by him doing these things, it paves the way for so many others. You two are such special people. We know JUST how you feel. That will happen to me - crying comes from left field; numbness sets in; you feel like youre watching your life happen to someone else. Im glad you posted; I wish I had seen it sooner. Love to you, friend. Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted January 30, 2004 Share Posted January 30, 2004 Carleen, Adding my prayers to the list as well. Blessings to you both, Peg Quote Link to comment Share on other sites More sharing options...
paddy Posted January 31, 2004 Share Posted January 31, 2004 My belated Good Wishes to you both. I am praying that this treatment will work for Keith. Keep the faith Carleen! Yrs. Paddy Quote Link to comment Share on other sites More sharing options...
karen335 Posted February 2, 2004 Share Posted February 2, 2004 Carleen, Sorry I am so late with posting, just saw your post. Prayers for you both and that your trip to New Orleans was successful. Here's praying that the new treatment works and cures Keith... God does hear our prayers. I am so happy for you that Keith is feeling better. Please keep us updated on Keith's progress... God Bless Karen Quote Link to comment Share on other sites More sharing options...
Guest Karen C Posted February 2, 2004 Share Posted February 2, 2004 Carleen, I don't think you are whining at all. I think you are a very strong and brave woman. Keith is a lucky guy to have you by his side. There's no way you could go through this without any emotion. I'm sorry I'm late reading your post, don't know why I haven't looked at this forum in a while. Please keep us posted on his progress. We all love you and Keith very much. God Bless, Karen C. (David C's wife) Quote Link to comment Share on other sites More sharing options...
sharyn Posted February 4, 2004 Share Posted February 4, 2004 Carleen - I am so glad you vented - please don't consider it whining. I think the problem is we try to be so strong for those around us that emotionally there are times when we erupt like a volcano, and thank god we can do that. It is not healthy to keep your feelings pent up, nor is it healthy to apologize for the feelings you are having. We all need to feel that our emotions are valid and yours certainly our. You have much love and concern for Keiths health and that is taking a toll on you - Please, Please write me if you ever need to blow off steam... believe I have been there (more than once) - God Bless You both. Love, Sharon Quote Link to comment Share on other sites More sharing options...
Carleen Posted February 4, 2004 Author Share Posted February 4, 2004 Thank you everyone for all the prayers and support. Our trip was frought with high and low points, but overall I think it was good that we went. We decided to go down on Friday through Monday even though our appointment was for Monday because airline tickets were cheaper that way. Prior to going, we called the doctor's office 3 times to see if we were properly prepared, if there was anything we should know do or bring and to see whether there was any reason for us to expect we'd need to stay through to Tuesday. We sent all files reports and scans down a week prior. So, we thought we were all set. Friday, it snowed in Milwaukee, where we were suppose to fly out, but our flight got cancelled, so they packed us on a short bus to drive to Chicago to catch a flight from there. The bus didn't have heat, and the defroster didn't work so one of the passangers had to sit up ON the dashboard wiping the inside with a newspaper so that the driver could see. We all thought we were going to die in a big firey bus crash. When we arrived in Chicago the flight was delayed 4 hours. But finally we arrived in New Orleans. The city was wonderful. We stayed at a beautiful bed and breakfast that we received a great deal on the internet on the charge. It was an old mansion and it was decorated in historical style. Very Charming. We ate out at some fabulous restaurants and even partied on bourbon street a couple of nights. We walked the French Quarter and rode the street-cars. We really enjoyed the visit and LOVED New Orleans. Monday we arrived at the Dr. Lowell Anthony's office at 12:30 for our appointment. Se met some wonderful people that have the same cancer type as Keith, as Dr. Anthony is a specialist in Carcinoid cancers. A couple of them were pretty encouraging as they were undergoing the experimental treatment we were looking into, and they were doing well with it. One gentleman has been keeping up his fight for over 6 years now. However, by 4:00 the only people we talked to were patients in the waiting room. We were getting really impatient as our flight out was scheduled for 5:45. Keith talked to the receptionist about our schedule and she rudely blamed us for not allowing much time for this appointment. We were shocked as we allowed 4 hours for the appointment and hadn't expected to spend it all in the waiting room. Finally we were shown into a room, and Dr. Anthony came in and picked up Keith's file and then left to review it. We sent it down a week in advance, and he never even opened up the Fed Ex package and were now expected to wait for him to review this thick file. At this point Keith was uncontrollably angry. He stormed out of the office because he was so mad, and was frightened that we would miss our flight. We tried to cancel the flight to a later time, but after talking to the airline 3 different people, they said we were already on the last flight by any route and to reschedule to the next day would cost us an extra $200 plus we didn't have anywhere to stay and we were almost completely out of money. I finally was able to calm Keith down and convince him that we came all the way for one purpose so we needed to try and talk to the doctor even if it was only for 10 minutes, so we went back in. The first 5 minutes the doctor was arguing with us that our priorities were wrong because we needed to set our priorities on health and not on catching a plane. He said he likes to spend at least 2 hours talking to new patients and his schedule is flexible because he spends as much time with each patient as they want. Well, that would have been nice to know in any of the three conversations we had leading up to the appointment. Not once did the scheduling nurse say that the appointments run 3-4 hours behind and that the Dr. would take 2 hours with us. Anyway, we finally got around to talking about Keith, and the Doctor at that point did seem really genuinely nice and concerned. He did say that he would like Keith to come back between his next chemo treatments to try the experimental treatment for one week. They would test him after that one treatment and if there was any benefit, they would set him up on a regular schedule. This treatment is Indium 111. It is the same as the Octreoscan testing, which injects the patient with hormones that are attached to radiated isotopes, but with the treatment verses the testing they use almost 600 times the amount of radiated substance. So, Keith and I are hopeful about that. We are willing to try anything. Finally we were on our way to the airport, with only 20 minutes to check in and board. But when we got there, the flight was delayed almost 6 hours. Apparantly because of bad weather in Chicago, all flights all day were running about 4-6 hours behind. I was upset. Couldn't any of the three people I talked to at United have told me that so that we could have not stressed out at the doctor's office and actually have spent some time with him. And to top it all off, they lost my luggage when we arrived back home. The stress level was unbelievable that Monday, but overall Keith and I did open a chance to participate in a treatment option, plus we did have a couple of good days in a new place and we really did add some wonderful memories to our beautiful life together. We shared a lot of love and joy in that weekend. In fact one stranger on a street car wished us well on our honeymoon as we got off on our stop. We laughed because after 4 years together, we both privately still do feel like we are on an extended honeymoon. How did he know? Quote Link to comment Share on other sites More sharing options...
niececola Posted February 4, 2004 Share Posted February 4, 2004 Hi Carleen, I am SO sorry you had to endure such a stressful situation, on top of fighting Keith's cancer. But, I am glad for you that in the end you left there optimistic and hopeful and were able to enjoy a new city. Prayers going up for you and Keith, hang in there! Denise Quote Link to comment Share on other sites More sharing options...
sharyn Posted February 4, 2004 Share Posted February 4, 2004 Wow... what a trip... full of ups and downs huh? I think the best news is that the Doctor is willing to allow Keith to try the treatment. He obviously feels Keith could benefit from it. He sounds like the type of Doctor who "says it like it is" and does not try to "sugar coat" anything. I know these types are a pain in the a... BUT... at least you know when they tell you something, they believe it with their whole heart. I am glad you made it home safe and sound and with good memories to share. Much love and prayers, Sharon Quote Link to comment Share on other sites More sharing options...
ginnyde Posted February 4, 2004 Share Posted February 4, 2004 Carleen, Was anxiously awaiting the results from NO. I am so glad you and Keith got to spend a little honeymoon time. The waiting game - for results, for appointments, etc. - is just excrutiating. But if the results are good, maybe the wait is worthwhile. Love, Ginny Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted February 4, 2004 Share Posted February 4, 2004 Carleen, My goodness what a trip!!!!!!!!!! I remember when Bill and I went to IU Med Center for Bill to qualify for the clinical trial. We had to wait and wait but nothing like this! I pray that this is the miracle we are all praying for - for your dear Keith. Blessings to you both, Peg Quote Link to comment Share on other sites More sharing options...
Snowflake Posted February 4, 2004 Share Posted February 4, 2004 Carleen, I spent part of my honeymoon in New Orleans - Aug. '02...a few months before the diagnosis... Sure is a FUN, hoppin' "little" town! I am SO glad you got to spend some happy 'couple time' to offset some of the bad. Hubby and I made the MD Anderson pilgrimage and had a WONDERFUL time the day before my appointment with a friend I met through work and her husband - it sure helped to temper the disappointment we had on the way home... More memories in the mental scrapbook... NEXT time you go, try the catfish at Mike Anderson's (French Quarter) - the thin sliced is SOOOO good (and I don't particularly care for fish)...I even ventured out and tasted the gator bites (hey, it's all fair, if a gator had had an opportunity to taste me, I'm sure he would have!). Glad you have a game plan and are back on track! Becky Quote Link to comment Share on other sites More sharing options...
Don Wood Posted February 4, 2004 Share Posted February 4, 2004 Carleen and Keith, so sorry you had so much stress, but this journey seems to be fraught with that. I am glad the overall visit was positive for you two. I am glad you enjoyed my home town, the Big Easy. I love to go there as a tourist. My prayers continue with you. Bon chance! Don Quote Link to comment Share on other sites More sharing options...
Elaine Posted February 4, 2004 Share Posted February 4, 2004 I had been wondering how it went for you two, and am sorry there was so much stress but happy there was also so much love and that it looks like Keith will have a new weapon to fight with. I always look for your posts because they are so open and honest--straight from your heart. Elaine Quote Link to comment Share on other sites More sharing options...
karen335 Posted February 4, 2004 Share Posted February 4, 2004 Carleen, Sorry you had to go through so much stress while on your trip. Sounds like it was very productive and that this may be an answer to all of our prayers. I really hope that this works for Keith. You are such a beautiful couple and deserve lots of children and a long life together. At least you did have some special moments together while in New Orleans. I am sure you are both looking at it now as special memories even though at the time it was very stressful. So your time was not a loss, it may have found a cure for Keith. Remembering you both in daily prayer... Many blessings to you, Karen Quote Link to comment Share on other sites More sharing options...
Carleen Posted February 4, 2004 Author Share Posted February 4, 2004 Thank you everyone for all your replies. I really do love you all, you are a truly wonderful group. My guardian angels all of you. Thank you Quote Link to comment Share on other sites More sharing options...
Andrea Posted February 5, 2004 Share Posted February 5, 2004 Well all in all I think it was a positive trip. You enjoyed time together and while you didn't spend two hours with the dr, you accomplished what you set out for, a new treatment option Good thoughts going your way! Quote Link to comment Share on other sites More sharing options...
Guest Laura Posted February 5, 2004 Share Posted February 5, 2004 Hi, This is Sam's Step-daughter. I haven't had time to post much, but I have been reading to see how people are doing. I sending a big prayer to ya'll now. Quote Link to comment Share on other sites More sharing options...
Karen Posted February 6, 2004 Share Posted February 6, 2004 Carleen, I have been wondering how things went for you and Keith. I'll be praying that things go 500% better on your next trip down with anything to do with doctors, airlines, or buses. What the heck was up with that bus ride Sounds like a crazy scene out of a movie. Unbelievable. Thank God you have each other and your love can bring a rainbow into the middle of a stormy world. God bless you two! Karen M. Quote Link to comment Share on other sites More sharing options...
DeanCarl Posted February 6, 2004 Share Posted February 6, 2004 Carleen, Sounds like Keith and I have the same reaction to being put "on hold". I've gotten REAL good at storming out of the VA hospital after hours of waiting. And like you I understand that "things happen" with doctors and airliines and such .... but TELL me!! I'm a pretty understanding type of person as long as I know what's going on. Anyway, I'm glad there are some new options for you guys and that you had some good times in "The Big Easy". Dean Quote Link to comment Share on other sites More sharing options...
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