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JanMarie

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  1. I have not posted here in awhile but have some down time at work tonight so have been reading some posts. I have to comment on this one as that saying"Perhaps they are not stars in the sky, but, rather openings where our loved ones shine down to let us know they are happy." Is engraved on a silver angel ornament. I know because the day my mom died I was out shopping ( not knowing she had taken a turn for the worse until I got back to her house) . I saw the angel ornaments and had to buy one for each of my siblings and myself which involved having the store call a few other branches to find 4 of them.Normally I would not have bothered with it but I HAD to find enough of them. When I returned home to find out that my mom who had been ok when I left earlier had taken a turn for the worse and the hospice nurse was at the house and had said she would not make it through the night (she died at 10PM) I knew why it had been so important to me to get them.I feel I must have gotten some vibe about what was going on with my mom. Needless to say a month later when my sister's opened the Christmas gift and saw the angel and read what it said they cried.The ornament will always bring back memories of my mom when it gets hung it on future christmas trees. JanMarie
  2. JanMarie

    Pat Hinkley

    I want to say thank you for all your kind words. My mom will be greatly missed by many but never forgotten. I wish you all a joyful Holiday season filled with love, joy, faith and most of all hope. JanMarie
  3. JanMarie

    Pat Hinkley

    I have not posted here for awhile but decided it was time to come share my sad news with you. My mom Pat Hinkley died peacefully at home sitting in her recliner with her family and pets around her on Nov. 25, 2006. My mom's battle with NSCLC began with a pleural effusion in June 2004. Mom put up a good fight and never wasted a moment feeling sorry for herself. Last year the Tarceva kicked some major cancer butt and as a result my mom died with no active cancer in her lungs so she did not have any symptoms that one usually sees with lung cancer for well over 1.5 yrs. Ours was a battle with liver mets but at the end it was not liver failure that killed her like we were all expecting. Mom stopped chemo in Oct. Feeling that the chemo would kill her before the cancer did. She had gotten a tooth infection and had the tooth pulled that was sort of the start of a downward spiral.That was when she decided she had had enough and told the doctor "no more Chemo". She was so weak from her last chemo and that tooth infection and she just never bounced back but instead got weaker and weaker as she quit eating. We started her on steroids and that had her eating again and drinking more but her strength never returned.She had started Hospice care and the doctor figured she would last a a month or two but he was wrong. I was able to get her to eat some Thanksgiving dinner at the table with us on Thanksgiving, so we had one last Thanksgiving with her. The day she died she had eaten lunch.The day had started out ok. I work as a respiratory therapist and have done so for 25 yrs and that morning I never imagined my mom would be dead by bed time but she was. My sister had gotten a fake christmas tree that morning thinking my mom would enjoy looking at it. We were planning on putting on some christmas music,popping some popcorn and decorating the tree that evening. I left to do some shopping feeling sort of excited about the evening to come but to my surprize when I arrived back at the house my sister met me out front to tell me the hospice nurse was there and said my mom would not survive the night and she was right as just before 10 PM she took her last breath and continued on her spirits journey. After hearing from my sister the chain of events of that afternoon I think my mom developed a pulmonary embolism (blood clot to her lungs) and died of the hypoxia (lack of oxygen in her blood) that it then caused. While a shock it may have been a blessing as it was a peaceful death as we gave her ativan and morphine only one dose of each but that relaxed her breathing. And of course oxygen.Death by liver failure can be painful so right now I am glad we did not have to watch her go through that. She is at peace now dancing with her sister and all her friends from her USO days that had passed before her. She had 82 good years which is more then alot of people get.I don't think she had any regrets and being that she was a non smoker that even applies to the fact she got the cancer.She did all she could to live a healthy life and death is a part a healthy life too. She will be greatly missed and I am only too glad that I had her as my mom as she was a great woman. I am trying to continue on in a positive way as that is what she would have wanted. We are waiting until after the holidays and plan to have a celebration of life type memorial as that is what she would have wanted. The hardest part is watching my dad find his way alone as at 82 this is difficult for him. I am taking a few weeks of vacation to stay with him and get the house organized so he can find things. It will be hard to leave to go home when I do. The one dog has lupus and he has had a major flare up due to the stress of all of this so I am his nurse right now.It was interesting watching the animals when she was dieing as they all seemed to know and dealt with it in their own ways. I have told my sister it was her fault as mom never like fake christmas trees, she always wanted a real tree. I said she opened her eyes took one look at the tree and said "what is that fake tree doing in MY house? If you girls think I am going to have a fake tree this year you are wrong as I am out of here" Yes there is humor after death. I would like to end this by saying Thanks for life and the memories Mom. You were the best. Now go dance. Dance, Mom dance.
  4. My deepest sympathies for your Grandfather. sending prayers of comfort to you and your family. JanMarie
  5. Your mom's is the type of story I love to see. Congratulations on 3 years and here's to many more! JanMarie
  6. Sending prayers your way in hopes that the meds work for your mom. It is hard to see ones's parent break down and cry and even harder to see them become someone foreign to us.Hang in there, JanMarie
  7. My mom got neuropahty from carboplatin and while it improved it never went completely away. When she was on Alimta it did not cause the neuropahty to increase at all. Alimta was a chemo my mom did great on as she did not have any side effects except some fatigue for a day or two about 48hrs after a treatment. JanMarie
  8. We met my mom's hospice doctor, Jim the other day. I love this guy and wish I could clone him and replace many of the doctors I have to deal with at work with The clones! Heck I wish I could have him or a clone as my doctor as he is alot like my dog's vet and I always joke about using the vet as my doctor in the future. Now that I know several of the hospice team members I will say that I could not have hand picked a better group to help my mom and my family through this difficult transition. Jim started my mom on decadron which seems to be stimulating her appetite so she has been eating some the past two days and seems a bit perkier. He feels that if she eats /drinks and gets past this dehydration and malnutrition that she could be around for a few months ( thou no one knows for sure as anything could happen). I am keeping my fingers crossed that she gets some strength back and will be with us and able to enjoy the holidays one last time. Thanks for the prayers. Sending some back your way. JanMarie
  9. Gwen, My mom just started hospice care.We have met several members of the team and I will say I feel blessed as I could not have hand picked better people to be the ones to help her and the rest of the family through this transition. Death is just a transition into a new experience for our spirits. I believe we are spititual beings having a human experience.While I will miss my mom more then I can say I can accept that she will just be continuing on in her lifes journey. Starting hospice does not mean death but rather a shift in the focus of care from treatment to that of providing comfort for what time is left in one's physical or human life. I see several people recommended the book Final Gifts do get it as it is a fantastic book to read. Take care and know you are not alone.JanMarie
  10. Thanks for the replies. We have met with several members of mom's hospice team and have met mom's actual hospice nurse. I think she was sent by god as my mom has always been a huge animal lover, and her nurse Sam is too so they share a common bond and Sam insists the dogs be around when she visits mom. I was going to lock the dogs up but Sam would not hear of it. My mom is a strong woman and does not seem at all afraid of death. I know there is a party just waiting for her up in heaven, not to mention alot of dogs and cats waiting to greet her. To anyone here that has had a mother like mine all I can say is we were awfully lucky as not everyone was blessed with such a mother.While it is sad to say goodbye it would have been even sadder to have never known the love of such a woman and had the great relationship with her. I am cherishing every moment we still have together and hope all of you caught in this battle are doing the same with your loved ones. My thoughts and prayers are with you all. JanMarie
  11. I Have been away from this board for awhile, not even lurking. My 82 yr old mom who has been battling Stage IV NSCLC since June 2004 has made the decision to stop chemo and enter hospice. My mom was always an active person says she does not want to go on living like this with no energy. Her 4th line chemo Taxoeter/ Gemazar totally wiped her out and the CT results we got right after she told the doctor no more do show progression in her liver mets both size and number and a small pleural effusion and small pericardial effusion but still no tumor in her lung. The tarceva did away with her lung tumor and it has not come back. She just had a bone scan as she has now developed pain in her back and if it is the cancer they may do radiation for pain control. Since my mom made the decision to stop before we got the CT results I feel it shows that she knew it was time to stop. It is sad to see it come to this as she was such a fighter for over 2 yrs but I will not say this is unfair as it is just life. Like it or not we all will die one day. My selfish heart doesn't want to see her die but my rational self knows she is tired, it knows quailty of life is what matters and it hates to see her in pain. The family all supports her decision and while I would love to spend one more christmas with her ( that old selfish heart) I wish her a peaceful death without pain and if it has to happen before christmas to be that way then that is how it will be. It is all in God hands. My prayers are there for all of you that are caught in this awful journey.May some of you beat this disease. God bless you all, JanMarie
  12. JanMarie

    Lucie Wood

    Don, I have been away from this message board for awhile but had time today to visit and noticed I did not see any recent postings by you so my heart sank as I started looking and found this post. I am so sorry for your loss, Lucy was a fighter and an Inspiration. I kept thinking if she can do this so can my mom. My heart goes out to you and I pray with time your heart will heal. JanMarie God gives us Memories so that we will have roses in the winter.
  13. I have not posted in quite awhile.My mom's 4th line chemo was Gemzar and Taxotere which she stopped 2 weeks ago . Her CT shows increasing liver mets but the liver is not yet enlarged and there is no ascites (fluid), yet she too was feeling bloated and would not eat and lost 14 lbs. The doctor decided it was from the chemo slowing down the digestive tract so he started her on Reglan to get it working better. It has helped and while she does eat breakfast and drinks ensure for lunch by dinner she doesn't want to eat but no longer feels bloated. If you discuss her not eating with the doctor make sure you mention the bloated feeling, Hope this helps. JanMarie
  14. Hi. I have become somewaht of a lurker again as I just don't have time to post.. My mom did have a pleurodesis via chest tube procedure not a VATS procedure.She had 3 effussions all within a week of each other so they did the procedure and that ended that problem This was back on July 2004. She did find it to be very painful said she would rather give birth again to 4 kids then do another chest tube pleurodesis.We arrived right after it was done and she looked awful but the good news was that it worked and she started chemo without any problems.And the pain was only for a brief time of a few hours so it was intense but brief. Be prepaired alot of things involved in treatment suck! Good Luck and God bless you, JanMarie
  15. Thanks for the replies.It helped just to vent to others that are walking or have walked in these shoes. I have to stress that my mom has final say in any of her treatment and we all accept that (thou my dad has a hard time with that) as she is the one that would have to deal with anyside effects or discomforts.It is her life and it is her death and I am ok with that as that is how it should be. I view death as much a part of life as birth. God knows due to my job I have seen plenty of death these past 25 yrs at the hospital.I am not afraid of death as I feel it is only the end of our human experience but I also know that it brings with it alot of pain and a huge void in the lives of loved ones. That being said my mom is of the old school where one does not question doctors and when asked if she would like a second opinion she says "well my doctor must know what he is talking about so I will do what he says"...ugh!! When I was a teenager the dentist we went to called about 4 months after I had seen him and said he was going over old Xrays and discovered a cavity in one of my teeth and said I needed to come in so he could fill it. My mom just accepted that but I refused to go back to him and finally got her to agree to let me see a different dentist and that "cavity" was never found, nor has it ever been. My mom just puts blind faith in such people and she will until the day she dies. As for cyberknife..here is a story for you. Over a year ago when the one liver met went to multiple I asked her oncologist about cyberknife. He and I went around and around as he kept saying they can only do it on brains despite my telling him I had talked to a doctor at Stanford that told me they were doing it on livers. When he realized I was not going to let it go a good 15-20 minutes into it he finally admitted his speciality is chemo and he knows very little about cyberknife.He could have saved himself face with me by admitting that when I first brought it up! Yet he still said I was wrong about using it on the liver as we walked out the door! I did get him to refer us to Kaisers radiation oncologist and after many weeks we got an appointment. One of my questions was how many mets are we talking about? Stanford said 3 maybe 4 they could do but no more. Well this doctor walks in the room and reads us the last CT report that we already had a copy of. When I asked How many mets she said "it says multiple but I have not seen the scan myself". I said can't you pull it up on the computer and was told no. ( we have been doing it where I work for several years and even the dcotors in town can do so in their offices!) Next she told me that she met with several other specialist and they all felt that cyberknife did nothing they could not do with RFA and they did not feel RFA would do any good ..yet non had even seen the CT! A few weeks later my mom had her next CT . I asked if we could get a copy and was told no so when the tech came to get my mom I asked her and she said " sure no problem" and we got a copy that we sent to Stanford. Turns out there are too many small mets to do cyberknife,but I still will always appreciate the doctor at Stanford as he acted like my mom's life was important while too many others act like "Oh well she is an old lady with terminal lung cancer..why do anything as it will kill her in the end". If nothing else this experience has taught me what it is like to be on the patient/family side of the bed rail and I have found myself being an advocate for some patients that have non. It has made me better at what I do as I have a ton of empathy for those I come into contact with. Thanks again for all the input as it does help alot . Please know that you are all in my prayers and what I would like more then anything else is to see someone with advanced lung cancer win the battle! Maybe someone here can do it! Godbless you all. Jan
  16. Right now I am feeling somewhat frustrated and just need to vent. Took my mom to see her oncologist today and I brought up Avastin (again). He is dead set against trying it. In my opinion he only colors within the lines! He says the studies done on it were with first line treatment not 4th or 5th line treatment and that combined with the fact there is increased risk of bleeding in the elderly he can not give it to my mom. I mentioned the people I have read about on various message boards that are getting it later in treatment and seeing good results but his reply was " well I am not saying it will not work as it might.I am saying I will not use your mom as a guinea pig". He says that the first thing in the oath he took to become a doctor is " Do No Harm" so if he gave my mom avastin not knowing what the effects are when given later in treatment and knowing the increased risk of bleeding in her age group and she did indeed have a stroke or heart attack he would in his mind be violating the oath he took.There is no way he will see it any other way. I think the fear of lawsuites maybe a huge factor as if you stick to protocol you are somewhat protected,step outside protocol and you open yourself up to lawsuites. I see it as he told her from day one that he can not offer her a cure he can only try to buy her time and he is now telling her her current chemo will be her last so what would she really have to lose? Maybe a few months if it did indeed cause a stroke or heart attack that killed her? But what about the possible time it could buy her if it worked? He says stage IV is uncurable well how will that ever change if doctors are not willing to take some risks? I am not saying I want my mom to be a guinea pig but if SHE sees her time as running out and is willing to take the risks of trying something that may buy her more time shouldn't that be her choice and not a doctor that has trouble doing something that isn't in a published study? She belongs to an HMO and can not afford treatment outside of it and he seems to feel the others in the HMO would agree with him so we do not have the option of going else where. I feel so darn frustrated as I would give anything to buy her enough time for HKI 272 to be on the market for her to try since she did respond to Tarceva so well. ( she has had too many chemo's to be in the clinical trials for it). She got her chemo after we saw the doctor and after I got her settled in at the chemo room I just wanted to go bang my head on a wall! On the bright side of the day her CEA is still coming down. So far anytime hers has gone up she has indeed had progression and in Feb. It skyrocketed to over 1000, then last month it was in the 700's and now is in the 500's thus we are all hoping that it is indicating that she is at least stable.We will take stable! She does get a CT in a few weeks so we shall see. Anyway I guess I am done venting for now as I need to get to bed as I have my 120 mile drive through Los Angeles to get home in the morning. Thanks for the spot to come vent as it hurts less then head banging! Jan
  17. You are so right you do need patience and a good sense of humor. Sorry to hear about the mishap with your port insertion but it can happen even with the best of doctors.May the rest of your treatment be less eventful. Jan
  18. Great News Jim! My mom took Tarceva from 1/05-08/05 and it did away with her lung tumor and as of her last CT she has had no active cancer in her lung! The darn liver mets responded at first but then stop responding to the Tarceva. Like you she felt great while on it and I thank god everyday for Tarceva as it gave her a break when she really needed one. I wish you many many months of responce to it. Jan
  19. Just got back from seeing the pulmonary doctor with my dad. We got great news as based on the PET scan results it did not light up at all and the overall shape of the nodule they do not feel it is cancer. He does have advanced emphysema changes and lots of what they feel is old TB scarring so they feel this nodule is probably related to that. He was exposed to TB as a child and probably had a mild case of it that cured itself with bed rest as he has in an accident when he was a boy and spent over 6 months in bed. He also has always had positive TB skin tests meaning yes he did have it at one time, but it is not active. The doctor says they will repeat a CT in 6 months just to be sure that is a stable nodule which based on everything else is fine with me. I read a post by Don the other day that mentioned how kids that have parents with lung cancer have the added worry that they too may get it. Don that is so true but now that it seems it is just my mom I sigh relief as the fact she got it at 80 makes me believe it is not genetic. When I thought my dad had it too once again I was thinking not genetic ( as I think those tend to be the cancers at earlier ages) but possibly an exposure to somthing that happened the same time for both of them which then made me wonder could me or my siblings have been exposed too? I have noticed several cases where both parents had it and then a child or even more then one child developed it within a year or two and that would make me think Exposure to something like radon? Anyway I find I am able to give a huge sigh of relief.My mom's cancer is enough for us to deal with right now. Thanks for any prayers sent our way! Jan
  20. Ginnie, I think we all know that waiting game too well. It took us 4 weeks and hounding the doctor to get the results from my dad's CT! I am sure you will get your's much quicker and am sending hugs and prayers for good scan results your way. Jan
  21. Jenny, Welcome, so sorry to hear about your dad.Lung cancer tends to be such a roller coaster ride and I don't know about you but I have never liked roller coasters! My mom is a two year survivor of NSCLC stage IV. Tomorrow we see the pulmonary doctor and hopefully get my dad's PET scan results as he too has a lung nodule. I think I can understand how you are feeling right now but hang in there as I keep meeting some great survivors of this disease. My prayers are with you. Jan
  22. Welcome Dani. I love the fact you are so anxious to get back to what you love to do as it beats the alternative of not living life. My mom did not have surgery but her first chemo carbplatin and Taxol left her very weak and we had to cart her around in a wheel chair if it was more then a few steps yet she insisted on doing all the cooking for herself and my dad and whatever visitors they had. When I would visit I would offer to do the cooking and she would get mad so as hard as it was to watch her move around the kitchen grabbing on to the counters for support I learned to just let her do it. She made the comment that cooking was the one thing she could still do and I realized how important it was to her to feel she was still needed and still could contribute to life. She did not want to be an invalid. Thank god Tarceva changed all of it and she was up zooming around soon after starting it and back to living a pretty normal life. I think as caretakers we just want to help and protect our loved ones and don't stop to think that by taking over we deprive them of things that make them feel alive. Lets face it if you are still alive you want to feel like you are and be treated like you are. Hugs and prayers coming your way from another Californian. Jan
  23. Lillian, Listen to your dad. He is one that proves with age comes wisdom! When my mom learned she had lung cancer Tarceva was not yet on the market so was not available outside clinical trials. Well at my mom's darkest hour when we thought she was going to die soon as she was doing so poorly Tarceva came on the market.First my mom was put on Iressa then the very next month swithced to Tarceva. It only took days for improvement and because of it she has had 1.5 years of pretty good quality life and is now a 2 year survivor of stage IV NSCLC. Had all of this happened a year earlier when Tarceva was not available I do not think my mom would still be here. So your Dad is right as you never know what is right around the corner. Hang in there and believe that you will survive this as I really believe that is part of my mom's secret too. Hugs coming your way. Jan
  24. Lillian, Listen to your dad. He is one that proves with age comes wisdom! When my mom learned she had lung cancer Tarceva was not yet on the market so was not available outside clinical trials. Well at my mom's darkest hour when we thought she was going to die soon as she was doing so poorly Tarceva came on the market.First my mom was put on Iressa then the very next month swithced to Tarceva. It only took days for improvement and because of it she has had 1.5 years of pretty good quality life and is now a 2 year survivor of stage IV NSCLC. Had all of this happened a year earlier when Tarceva was not available I do not think my mom would still be here. So your Dad is right as you never know what is right around the corner. Hang in there and believe that you will survive this as I really believe that is part of my mom's secret too. Hugs coming your way. Jan
  25. Glad to hear the good news. Here's to many more NED scans! Being new to this board I have not yet shared that via my job of the last 25 yrs I have met lung cancer survivors that had surgery for lung cancer 25-30 years ago. Some had chemo, some had radiation , some had a combo of the two and some had neither but all survived and have remained NED all these years, so there is hope as I have met the survivors! I also keep in mind that these people had their cancer long before drugs like Tarceva, Irressa and Avastin so I think there will soon be many more long time survivors! Time to shove off to work, hope everyone has a great weekend! JanMarie
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