kim81sky

I am looking for the same thing in Chicago. I have a lot of pleural effusion kits that the hospital sent home with mom. I have a friend who also has a hospital bed that she would like to get rid of. Any suggestions for the bed?? Kim

Hello- Well- it happened. I reached for the phone to call her today without thinking first. Actually started to dial the number for the last place she was before my beautiful mother passed. When I realized that she wouldn't be on the other end, I was stunned. Didn't know if I should laugh at myself or cry b/c of my sudden feeling of loss. I've cried every night-realizing full well that the worst hasn't hit me yet. I have so many things to do right now, I guess I just can't let it. Too many things that I would just take for granted that she would help me with. What to do now? Who to turn to? I haven't figured that out yet. Her home is still as it was when she left it for the last time on Oct. 8th. Haven't really touched anything. Her car still sits in the garage, waiting for her to drive it, and everytime I am there, I seem to expect her to walk out of the bathroom, or the kitchen. And even tho' her memorial service was Friday, I still expect to come there and see her. My kids and I talk about a different favorite memory of their "Omi" everyday, how they remember her making lunch for them, or when she woke them up for school, and so on. She still took care of them almost everyday up until October 4th. She was so incredible. So selfless. I still go there, collect her mail, water her plants and everything I would do as if she was on vacation. Guess I just can't accept that she won't be coming back. I walked into her place the other day, and I was absolutely assailed by her scent. It was the first time since she entered the hospital 2 months ago, that I almost "sensed" her presence there. It was so strong, I had to sit down and just take it in. I miss her so much. How do you grieve for someone who is so important to you, was such an integral part of your everyday life-and your children's-without falling apart? I am really trying to hold it together....take care of things....be strong....but when I went to make that phone call this morning-I realized I won't be able to hold it together all the time.... My heart is breaking

Thanks Nick! I used this photo at her Memorial Service on Friday. This picture was taken when she was with her sister in Germany, after my mother started treatment for her cancer. She had already been through 12 weeks of a research study, and had received her initial round of traditional chemo. treatment. Luckily for my mom, she was able to spend the month of July, this year, with her sister as well. Thank you again, Nick! Kim

Tova- I read your reply to me just a few minutes ago. I felt, that instead of responding under my post, I would create a new one-in honor of you and your mom. I feel your grief so deeply. I have just walked into the house after meeting with my brother and the pastor that will do the memorial service for my mom. I hear you, I feel you, and everything that you have written, so mirrors my love and life with my mother. I have no words to say, tho' I feel your pain. I have done things this week-my mom died on the 28th as well- that I did not think I would be able to do at this point. I have worked, done normal stuff, and have spent many hours talking and being with my mom's best friends. It is as she would've expected. I have learned things about my mom I didn' know, I have realized traits in myself, I didn't realize before-that are so indicative of my mother. I talk to her all the time. Even though my grief is real, I understand that it's full effect hasn't come yet----I am not numb; I feel everything----but I also feel a peace, not relief, but a peace that I have never felt. I hope that it is a true sign that my MOM is at true peace. I can only hope that in our future, yours, mine and everyone who loses someone to this horrid disease, that we do find a PEACE, and a PURPOSE. I will not let my mom's suffering be for naught. Know that I will think of you often, and your mom. I now feel as if I have another "sister" in a sense. I hope, that things get easier-whatever that means for you. All my love-Kim

I'd like to put up a picture of mom, but it is over 350KB. How do you get it smaller for the avatar? Kim

I, too want to extend deepest symathies to his family and friends. I used to hold him up to my mother as an example that anything is possible. Wow , what a tragic loss.... Kim

Thanks for your support and well wishes... I actually got up today, thinking I would go to work like everything was normal. Then I realized-nothing is. My brother and I took care of what I thought was most everything yesterday-and now I have lists of things in my head of what I need to do. My mom used to be like that. I used to laugh at her b/c she never sat still-even when it appeared that everything was taken care of - she was still doing. I thought-until now-that it was one trait of hers that I didn't inherit. I wonder if this is one way she will stay with me....I become even more like her (I am not complaining). I once had a friend that said that daughters dont truly become grown women until their mothers leave them----I wish I could've stayed a child longer .

Hello again. Seems like I just posted a few days ago venting frustration and upset, now I am posting with a major emptiness in my heart. My mom, best friend, and closest confidante passed away this morning, quietly in her sleep. I left her last night, after spending the whole day with her for Thanksgiving, somehow knowing that I would get the call. I did not want to go, but it was late, and felt it was time to get home to my family. I never knew what to expect when this time came-but I know I feel as if I feel her relief. The last 10 days or so have been horrible, and the last 4 days she just was not herself. The nurse prepared my brother and I, or tried to. What to do now? In my mother's fashion-she was the type to attend to business immediately-my brother and I set out to do exactly that. I swore I heard my mother's voice in my head "don't forget this...don't forget that" and so on-and of course-"Don't forget my flowers!" So-everything is already taken care of. But now I have an energy that I haven't felt in a while....like things need to get done-but I don't know what they are. I send my love to everyone here-those who are grieving-and those who are fighting. I had often told my mother about this sight, and asked if she was interested getting on it herself-she just was never the type to ask for help. She always said that she thought of the many on this sight, and how she wished sights like this weren't necessary. (((Patti B.)))-I once said your love of gardening, and your will to fight reminded me of my mom-I told her about you-I wanted to let you and everyone here know that she will be fighting with you in spirit. Kim

Hi everyone-it's been a while. I have been reading, but just dont know what to say. Mom has been in and out of the hospital and rehab centers since Oct. 8. Latest scare was november 2 when she was rushed back to the hospital unable to breathe. Turns out that the first rehab facility let her lungs fill up with fluid(pneumonia). She had been telling them that she felt it, but they kept saying there was none there, then it took my mother's roommate at the rehab place to get a nurse for someone to realize she was in trouble(they didn't answer her call button). That only happened after the roommate was tired of my mother being verbally abused by a CNA. I was so angry .......but that's another story...... She spent 5 days in the hospital before they transferred her to another rehab place. While in the second hospital, I found out that the cancer has doubled in size in her liver, and that it is now in the lining of her stomach. She has lost about 15 pounds, and is very weak. She has good days, and bad days, but everyday seems to start out with her having an anxiety attack, and stopping breathing. It is such a rollercoaster. One day she is talking about when she has to start taking money out of her retirement account-next year- and the next day she is telling me what she wants to leave certain people. She also is sleeping a lot now-when I am with her she sleeps about 15minutes for every hour I am there. Thankfully tho', she has no pain. Tomorrow, we have her "medical care meeting" at the second rehab place. Turns out that medicare has a generic belief of "therapeutic gains" that a person must make in order for them to pay for the care. If the rehab place's therapists do not see an improvement in my mom, the place can ask my mom to leave, or we can pay for 100% of it out of pocket, so my brother and I are scrambling. Do we do at home, or do we pay for the facility? She definitely needs round the clock care. I was intending to do a lot of the care myself, if she came home, but now that may not be possible. I personally have been hit with the news that I may have ovarian cancer, and I don't know what to expect. There is a good chance that this is only a scare..but only time will tell-and lots of tests. So right now as I type this-I feel sort of numb. Can't think of the possibility of going through this without my mom to lean on..... Anyway...I am looking for opinions about facility vs. at home care.....Which is the best route to take........?? Everyone is in my prayers:)

Hellos go out to everyone...... I have been following, but have not posted in a while. I feel bad that I always seem to post when things are bad. Well, some of you will remember that mom went to Germany to see her family this summer......and she has declined exponentially since then. The wheres, whos, whys, don't seem important any more. I have vascillated between anger(very severe and debillitating anger) to the same level of grief since she has come home. Gosh, I ask myself, what could have been done differently?????????? I do honestly believe that it was the trip that ultimately will lead to her death, and the anger I feel towards her sister and brother for not coming here is palpable. In some sense, I do blame them-and I know I sound like a bitter, selfish bit$%$^& for it. I am also very angry at her drs. Can't help it, I just am. I asked for a slew of non-invasive tests to be done at the end of August-she seemed to decline too fast- and no one would do them. Then to find out 10 days ago, that I was right and maybe if they had done these tests 6 weeks ago when I asked them to, we wouldn't be in this situation now. How do you stop feeling so bitter??? The dr. told me my mom has 2 weeks to 2-3 months left. She has been suffering for the last 2weeks, I have realistically let go...but she wants to fight. So, I still fight, torn b/c I have never kept anything from her on this journey, but now I have to-to keep her hope alive. She is not ready. Tomorrow, they have set up a bronchoscope test to see if there is any obstruction. Only after this test will the dr. tell her if there is any reason to fight. Sorry for spilling this-I am so torn with so many emotions, and unfortunately they are very conflicting. A sense of calm has come over me-I have seen her suffer too much already, I am ready to let her go, so that she doesnt suffer. She wants to go through testing to see "If my daughter's research is proven right or wrong" she told the dr.. Klls me to know that she is suffering because she thinks I could be right on a long shot. So-I must end my tirade, even tho' I could go on. Has anyone been in these shoes? How to deal with this? How do I explain it to my young children who grew up with her in there lives 7 days a week? I wish, that as I do with my kids when they are hurting, I wish that I could hold her until the pain goes away, and that she is okay again. But I can't make this ok anymore..... How does one do this?

Aileen- Sorry to hear about your sister...I will keep her in my prayers. About 6 weeks ago, I lurked around looking for answers to this question-taxotere or what-basically. The oncologist didn't give us a choice at the time, but he did tell us the success rate is about 20% or less. Well, my mom went on it, and I am sorry to say, it did nothing for her. You do have to remember tho' that everyone is differentmy mom has been fighting this battle for close to 3 years. She did suffer all the side effects that one gets from chemo, and about 2 weeks after she lost all her hair-she was taken off taxotere. My suggestion is to look around for any possible research studies your sister can be a part of. People are monitored much more closely, and with some of the new stuff that is out, the side affects are minimal. Check the "Clinical Trial" portion of this forum-some great info. there... Lots of love and hope, Kim

Kukla- I just read your post about the SOB and fast heart rate-and I also had a similar question. My mom is experiencing the same symptoms, but she is on Taxotere. The racing heart upon standing and walking is very severe-it is keeping her from doing so much-almost everything. She is now on O2 almost all of the time now. Is this common? Could it also be caused by pain killers? Her symptoms are also accompanied by extreme fatigue. What helps? Kim

Well, Mom is back and feeling awful. Soooo tired, fatigued, and seemingly depressed. Hard to see her this way. She had an appointment with her oncologist today and got hit with some news that upset her. She had her hopes up about this research study that the doctor told her about before she left for her trip, and now she can't be in it. The dr. had told us she would definitely be in it, and now the company has amended it's restrictions-she has had too many prior treatments. The decision is now that she will be on Taxotere-once every 3 weeks. She is none too happy about losing her hair again. The other worrisome thing now is her heart. She is having too many atrial fibrillations, and there isn't any other meds she can go on. The onc. told her that she really is not a candidate for a cardiac ablation anymore. So what to do now. I am afraid that one thing or the other will be limited greatly b/c they are both (the heart issue and the lung issue) are equally as serious. I was not expecting this, so I really had no questions for the onc. My brain is fried, I am having some health problems too, and so is a friend of mine. I am just so drained right now. Anyway-does anyone have any info. about Taxotere? Can you tell me what you have experienced? Sending happy thoughts to everyone!! Kim

MARCI- I am sorry to hear about your grandmother. I can only imagine what you must be feeling. I read one of your other posts where you mentioned that you have Fibromyalgia. How are YOU doing??? I have Fibro. too and when we get bad news about my mom, my Fibro. gets sooo bad. What do you do to control the pain? I use Cymbalta, and it helps. The Xanax helps me sleep, but I only use it when I absolutely have to. I take 800-1200 mg of Magnesium-it is a natural muscle relaxant, and it helps me sleep and relax. I hope you remember to take care of yourself during these times, I know how tough it is to do for all and ourselves too. Best wishes, Kim

Thanks guys for all your prayers-they worked! It turns out that it wasn't as serious as we all expected. Long story short.....she was overmedicated. Her cardiologist had ok'd her taking a second pill when the fibrillation starts, not thinking that it would happen every day....so there was too much in her system, which was then causing the opposite effect. She is also on unnecessary pain meds, and of all things, she was dehydrated-which also could've contributed to her heart issues acting up. The extra pain med she was taking was causing the abdominal distress-which caused her to think the cancer in her liver had increased.......and so on, and so on. Lesson learned-all of her care takers need to be a little more diligent-including myself. This turn of events has also showed me how important it is to have a different set of eyes occassionally looking over things. The doctors she has are all wonderful people-but anyone can make mistakes. Anyway-she is now drinking "tons" of water-while still enjoying the German beer- and she says she is feeling much better! Her voice sounds so much stronger too-the weazing in her voice that I heard on Sunday seems to have gone away. Yesterday was her 70th birthday , and she said it ended on a great note! She is coming home on Saturday and says she wants to take me out for my birthday-which is Saturday as well-I laughed b/c it is wonderful to hear that she has that much energy! Next week, she will start another research study that her oncologist is very excited about. The study is originating out of his office by us, and the meds are from the company Amgen. There are 2 drugs they are studying, and we have been assured that my mother will receive both of them. This is a phase I study, so we don't have too much information on how they will work, but the dr's have seen success with this combo in another type of cancer. Keep your fingers crossed-and I will keep you all updated..... Sending positive energy and prayers to everyone!!!

Hi everyone- Well I got the phone call that I had been dreading. Mom is still in Germany, I am in Chicago, and she has to go into the hospital. Her sister and her were on vacation on an island in the North Sea, and she had to leave early because the pain was too intense. It was a good thing that my aunt's son had just arrived there in order to spend some time with them. He brought them home. Mom called me instead of going to the hospital first, asking me what I thought, so I called her dr., and essentially he said the same thing that I did-go. The pain is from her heart (she has a serious case of atrial fibrillation), but it is also being caused from the new lesions in her lungs and liver. By the way she was weazing, I also think that there is probably more fluid in her lungs. They have to rule out an infection or pneumonia. I am so worried-especially since I am not there with her. If things get worse, I will be going back.....Just waiting for news-hopefully soon, but I am not sure how quickly they work over there. Here is sending good thoughts to everyone else tho'.....

Patti B.- Thanks for the best wishes! I do have names, numbers, fax numbers, and assistants' names of doctors in Germany! One of them even happens to be the female doctor that Farrah Fawcett went to. Her name is Dr. Ursula Jacobs, and I actually have exchanged some e-mails with her. I wanted my mom to meet with her for a consultation, but my mom said no. Maybe she will change her mind- I hope! I will let you know how the trip goes, and once she starts treatment, I will keep you posted. We are excited about these meds. Kim

Hi everyone- Sorry I haven't posted in a while. Mom had 6 weeks of radiation on her left lung, and during that time, I gave myself permission to take some time off of looking at things about lung cancer. We got the results of her latest scan today....the good news is that it isn't as bad as I thought it would be. She was in a lot of pain last Wednesday/Thursday that led me to think that while on radiation, the cancer had spread to her liver big time. Unfortunately I was right, it has, but not nearly as bad as I thought it was going to be. The cancer has multiplied in her right lung, and now there is fluid on the right lung, but everything in the left lung is smaller, and there is no fluid there. The site in the liver is only 1.3cm. Everything else is stable. We are leaving for Germany on Friday, and I am scared out of my mind. She is putting off any systemic treatment until the mid of August when she comes back, and has refused to see any doctors that I contacted in Germany. Her dr. did tell her that he did expect her cancer to be worse when she comes back, but she is willing to take that risk. I am going for the first week, to make sure that she will get there ok. Has anyone taken a long flight with cancer, and was there any problems? I hate to ask, but I am afraid that there will be complications b/c of the flight. We do also know what the treatment will be when she comes back....She will be starting a research study with new meds. from Amgen. They are called AMG655 and AMG479. One causes cell apoptosis(cell suicide) and one is an insulin sight inhibitor. Anyone heard of these? I want to send a shout out to all who have been dealing with this horrific disease........I have watched my mother's courage, and have read so many posts....you guys(and gals!) are amazing! Patti B- you remind me of my mom! Love and hugs to all! Kim

Thanks Sandra for replying. My mom has just been incredible. She understands what is going on, but even today, when talking finances w/ my brother (he is her financial advisor), she is planning for 10 years from now. Her spirit is amazing. I have read many of your posts, I get much strength from you, and everyone here. Thank you, and I will let you know about the treatment. Hopefully, she will be able to do the new med, and I can send on some good news.... Kim

Hello- I am not necessarily new here-posted 2 years ago, but have been reading frequently. My mother was diagnosed 2 years ago with stage iv adenocarcinoma. Main tumor in the upper left lobe, and many nodules within her right lung, with lymph node and bone mets. Her treatment started out with phenominal results, but over the last 8 months, the results have not been as good. She has been through Tarceva, Avastin, Carboplatin, a research drug called ABT869, and her last treatment, which stopped today was Alimta. She was put on Alimta in January, and basically it has done nothing for her. We found out today that the cancer has gotten worse-it has spread, and tumors that we thought were shrinking have grown. Dr. did not seem real hopeful today, but is willing to try another research med(if she qualifies) by Amgen. Another drug w/o a name, just numbers. Really shocking news today-Mom has been feeling really well, and has even put some weight back on. She does also have some considerable pleural effusion, with almost a complete collapse of the upper left lobe of the lung. My reason for posting is that my mom is planning a trip to Germany in June. I am trying to talk her into possible treatment there (she was born and raised there, and has siblings there), has anyone heard of treatments in Germany? I have heard/read that it is a very progressive, and successful, country in treating cancer. Also, this may be the wrong site for this, but....... I saw Oprah's show on Christina Applegate, and her ordeal with breast cancer. I have gone to Oprah's site and asked if she would consider a show on lung cancer. Would people go to her web site and suggest this? Maybe info could get out to help others, maybe early types of screenings could be implemented??? (With yearly physicals) Anyway-I wish all well-and please if anyone has info about treatment abroad-let me know.

Hello- My mom was diagnosed with stage iv lung cancer-adenocarcinoma-in April of '07. She did almost a year of Avastin and Tarceva, and is now on a trial med. called ABT869. Has anyone heard of it? I am an avid researcher on anything related to this, and would love to know of anyone elses experience...... Kim