pamela
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Thanks everyone,
I will download and print out the form and take it to Lauren’s next Dr. visit. Too bad she won’t be seeing her oncologist until the end of May because she is scheduled for her Therasphere procedure May 16 and won’t have chemo again until May 30. she probably would like to have it after the Theraspheres because I think it makes you feel pretty crappy. Take care all of you sweet ladies!
Love, -Pam
Kris,
You managed to crack me up yet again with the Walmart greeter thing. Haaaahaaa! Maybe you could work nights as a comedian. I just think you and everyone else are entitled to everything that is available. That is why I want a handicap sticker so if Lauren doesn’t feel good enough to walk far, we have a choice to park close. I usually park super far away because we have a new Explorer and I don’t want anyone hitting it. Poor Lauren. I don’t really understand the reason we are penalized because she lives with us. That means we are paying more out of our pockets for stuff. There are so many that are way worse off than us, so I would never ask for help for us. My husband has a good job. It hurts us that I am not working, but with all the appts. Lauren has, I would never be able to keep a job. I would be fired the second week I worked there for absences. Hopefully, one day she will be better and I can get another job. I think everything you mentioned is great for others that really need help. Thanks , Kris!!
Kris,
Maybe it is different in each state. I would call to make sure, though. All I know is that Lauren will be paying out the wazoo for COBRA. Then it goes up even more when it is the extended 11 months. She gets penalized for living at home and doesn’t get as much money from disability. She could never afford to live on he own with what she is given. Her insurance is going to be almost half the amount she receives a month. I don’t know how all of you living on your own do it. By the time you pay for insurance, prescriptions, doctor co-pays, hospital bills, and gas for travel , there is nothing left. Sorry Marion, I must have overlooked that we had an Insurance section. I usually put all my comments in the “General Discussion” slot.
Hi Kris,
I guess Medicare kicks in 24 months from the date you were deemed disabled. So this 11 month extension is for people that haven’t received disability for 24 months before their COBRA runs out. The letter from Disability has to be under 60 days old, so I guess we will be contacting the SS office. Yippee, I have been on the phone all day with different agencies. Can’t wait to have to call another one.
Kris,
Maybe you need to sit her down, if she matters to you, and tell her everything. People assume just because you look good, that you aren’t that bad. I don’t know how many people Lauren has sat down when the time was right and laid it all out to them. They had no idea she was that sick. They think all really sick cancer patients are skin and bones, pale, and have no hair. They have no clue as to what you, Lauren, or anyone else with CC really goes through. Probably because you are all such tough nuts that are fighting so valiantly and put up a good front. The people that truly matter know what you are going through and hope and pray for you daily. Like all of us here!! She doesn’t really sound like she is worth your energy to worry about it. We love you, Kris, and are here for you. We know that every day is a struggle and you are an amazing person. Take care and thank you for sending your troll to visit Lauren!
Love you girl,
-PamSusie,
I am so sorry you have to go through another surgery. I am hoping and praying everything will turn out A-OK. Please keep us posted about everything. Sending much love your way. Take care.
-Pam
I am very sorry to hear of your father in law’s passing. You and your family are in my prayers.
-Pam
Hi Melissa,
We live in Uniontown, Ohio which is about an hour south of Cleveland. So believe me, if this hospital wasn’t great, we sure wouldn’t drive that far. Lauren lives at home with us and our son, Ryan. As far as the chemo goes, I think the combination of those 3 are pretty powerful and very rough on a lot of people. Lauren might have an easier time because she is young and healthy. The main thing to remember with chemo is to keep up with your nausea meds. Lauren takes them around the clock for two days after chemo. You will probably be given Zofran and Compazine for nausea. Zofran gave Lauren headaches so she only takes Compazine. If she takes it once she is really nauseous, she will usually throw up, so take it at the first sign of nausea, not when it is full blown. With the three chemos, Lauren would feel like she was run over by a truck for a few days after. After she had 12 rounds of chemo, Dr. Z took her off the Cisplatin for a while to give her kidneys a rest. It is the hardest of the three to take because Lauren feels fine after chemo with only the other two. It also lowered Lauren’s platelet count quite a bit and she had to skip a few chemos because they were low. They have to be over 100,000 to receive chemo. The 5FU is administered in a pump that is hooked in to the port. Your Mom will wear it home for 48 hours, then have to go to the hospital to have it disconnected. It is put in a pouch that your Mom can wear like a fanny pack or over her shoulder. It is kind of a big pain for sleeping and all. Since we live so far away, a visiting nurse came out once, didn’t know how to unhook it and Lauren freaked out. After that, I asked if I could be trained to do it myself, and a nurse educator at the hospital trained me to do it and I have done every one of Lauren’s disconnects with no problems. That could be an option for you if you wanted to do that. Theraspheres is not real common. I know Dr. Sonnenday thinks it is a really good treatment option. Radioembolization is when millions of tiny, I mean like smaller than a fine grain of sand, glass beads of radiation are shot directly into the liver tumors to kill them. They are put in through the groin in an artery. Lauren had a practice run with dye on Thursday to see if she is a good candidate for the procedure. She is scheduled for the procedure on May 16. They are called Theraspheres or Sirspheres. Two different companies. They come from Canada. They are not approved by the FDA in the US. They have some promising outcomes though. Well it is getting late. I need to go to bed. Any other questions you may have, feel free to ask away. If I don’t know the answer, there are so many very bright and helpful people that will know. Take care and all the best. Maybe we will both be there for treatments one day and can meet.
Love, -Pam
Oh my gosh Melissa. Now I am thrilled to meet you. You live in Ann Arbor. How lucky you are to be that close to the hospital. My daughter’s name is Lauren. She just turned 26 in March. She was diagnosed on Aug. 29, 2011 after a liver biopsy ordered by Dr. Sonnenday. My daughter, Kristen, is 3rd year anesthesia resident at the hospital and she spoke with Dr. Sonnenday about Lauren and that is how we found him. He is the most wonderful doctor we have ever met. He gives us hope. Dr Zalupski is great too. It took us a little longer to warm up to him. Being an oncologist, I think they are taught to give the bad news and keep a distance. He has come around though and I really think he loves Lauren. He really cares so much about her. Lauren is doing really well. She is in a clinical study where she received Gem/Cis and 5FU. She had one large tumor and a few small tumors. The large one was the size of a canteloupe. It has shrunk at least 4 cm. The small ones have as well. We spoke with a radiologist a few weeks ago and her large tumor is now 50% necrotic (dead). She just had a mapping procedure this week to see if she is a candidate for Theraspheres. In a nutshell, this a form of radioembolization where tiny glass beads of radiation are shot directly into the tumors. If this kills her tumors, she might be able to have a resection. When we first started out, I think everyone thought Lauren’s future looked mighty grim, but with the help of these wonderful doctors, things are looking better. She feels great most of the time. Her back hurts, but that is about it. Chemo is hard on people, but she has had an easier time than most with it. She did lose her hair. Cisplatin was the hardest drug for Lauren to handle. Her platelets would go pretty low and she had to miss a few treatments because they have to be over 100,000 for treatment. She is only on Gemzar and 5 FU now because Dr. Z wanted to give her a break from it for a while. It is hard on the kidneys. If you have any questions at all, feel free. I have learned so much from this site. I felt lost when I first joined and had not a clue about terminology or anything. This site has been such a blessing to me. I hope it will be for you as well. I wish you and your Mom all the best and I can say she is in the best hands at U of M. God bless.
Love, -Pam
Hi Melissa,
I just wanted to welcome you to this site and ask you where your Mom is being treated in Michigan. We travel 3 1/2 hours to University of Michigan Hospital for my daughter, Lauren’s treatment. If you go there, I will be more than happy to tell you about Lauren’s treatment, progression, etc. We have been going there since Aug. 2011. Good luck to you.
-Pam
I am not sure what the difference is, but my daughter has a power port. They give you a prescription for Lidocaine and you rub it on the area about an hour before the port is accessed. You then cover it with a piece of Saran Wrap or Press’n seal so it doesn’t get all over your clothes. She is always really numb and doesn’t feel anything.
-Pam
Deb,
The pictures are beautiful. You had a wonderful life together and I find it so heartbreaking that you had to lose him to this terrible cancer. I am sure he is right next to you every day helping you along. Bless you and your dear children, Deb. I am so glad we are now Facebook friends.
Love, -Pam
Dear THennesy,
I would like to welcome you to this site. Some will say chemo does not work. I can tell you that it has worked for my daughter. She has been on Gem/Cis and 5FU since Sept. 2011. Her tumors have shrunk and her large tumor is 50% necrotic (dead). She is now getting ready to have a radioembolization procedure. Everyone thought my daughter’s prognosis was very grim at the beginning. We have never given up hope and never will. She feels better now than she did before the chemo. So, go into this with a positive outlook. It makes all the difference. God bless you.
-Pam
