phylsgirl

Patti, Been waiting to hear this. AMEN!!!!!!! Hugs Ree

Thank you all for the prayers and wishes for my mom and family. Lynn: re hospice- No, mom was not in hospice yet whenI arrived home on Sunday (8-10) . hospice was sending the nurse over on the next day,Monday to do an evaluation and for us to sign my mom up for hospice. But when I arrived home my mom's breathing being what it was we had to get her to the hospital asap. Sorry I wasn't clear on that. I just got off the phone with my grandmother she said my mom's breathing seemed more labored than it was two days ago. My mom was also moved from the pcu ward to a private room, right by the nurses stations They also moved the feeding tube from my mom's mouth to her nose so I don't know if the move to a new room, plus moving the feeding tube that has anything to do with how my mom is breathing or if this is just the way things are going now. My grandmother also told me, she told my mom if she wants to let go it's okay, we don't want to let her go, but we understand if she is tired and is ready for her next journey. Right now I am holding my own, I know my brother will probably fall apart when the time comes and I need to hold him up as best I can. I think my grandmother has made some peace with this. She is of very very strong faith. Like my mom told me when she was diagnosed "Whatever the outcome, we will all be okay." So I hold that near to me. I'll keep you posted and again, Thank you all for the prayers and thoughts. Hugs Ree

I just got back in to town a couple of hours ago from visiting with my mom and family. I'll try not to be long-winded, but if I am, I'm sorry. This is an update from my previous post. http://lungevity.org/l_community/viewtopic.php?t=38285 I arrived back home a week ago Sunday to find my mother having very labored breathing. My grandmother told me she sat up all night with my mother and she was waiting for me to arrive. Needless to say there is nothing as disturbing as coming home and finding your mom in respiratory distress. I held my mom's hand while she struggled to breathe waiting for the ambulance. My mother knew I was there for she squeezed my hand and nodded her head when I asked her. That alone helped me Once we got to the hospital on Sunday a week ago, they put a breathing and feeding tubes in mom and of course an IV and admitted her to the PCU ward where she has been since a week ago Monday early AM hours. Originally I was going back home to see my mom's admission into hospice, but labored breathing demands immediate attention, not hospice. The ER doctor told us that her oxygen level was 85% which is too low, but once she was placed on oxygen it was back up to 100%. My grandmother and I was at the hospital every day from her admittance except one day Unfortunately I believe my family and I are truly taking the first steps towards an inevitability. The doctors did a (contrast)scan of my mom and basically the right lung is gone; tumour filled and the left lung has two tumours which are beginning to press on the bronchoi tube. Also it appears the tumour that was discovered on her liver during the June scan has either increased in size or a new one is growing. There was also "something"showing near her windpipe. With her immune system low and her weight low as well, infusion chemo is out of the question and the Tarceva she was on obviously did not work. When mom is awake she is conscious and very aware, like if she hears a sound she'll make a face like, "what was that?" But she does sleep alot A tracheotomy was done two days ago to make her more comfortable and also she would be able to 'mouth' her words. The doctors let me stay with her while they did a sonogram on her throat and diaphragm just before the procedure. She was awake and I introduced her to the nurses and doctors. The procedure was, in the doctors words "textbook" Mom indicates, when asked that she is not in any pain so that is a blessing, although she has an extremely high tolerance for pain. The doctors say they will remove the feeding tube in a few days and see if she can swallow liquids and then work their way up to I guess puree-like foods. Right now I am numb. My family and I shed tears this last week and half, but we know we have done and will continue to do what is best for mom and her care and comfort. I know I went home to meeting with and set my mom up with hospice, but this, including the latest scan, hit home harder. I am mad we never really got a chance to put up a fight. But at least now my mom can breathe, she is being fed and hydrated and comfortable. Should be heading back home the week of labor day, by then, God's willing, she should be able to drink liquid and I can assist with the feeding along with my brother and grandmother. Just want to ask for prayers for my mom and my family and as always for the support these boards bring. Hugs to all, Ree

Thank you all for your thoughts and prayers. I'll be leaving tonight to go home to my family. I will have limited access to a computer for the next week, so I probably won't post an update till I get back. Btw, you are so right my grandma was a nurse for thirty six years before retiring and on my last visit home she said to me, "The patients I was able to help and here I am now unable to help my own child." And my mom is her last surviving child as well so yes this is doubly hard on her. Again thank you all for posting your thoughts, prayers and well wishes. I'll update you when I return from my visit. Love and hugs Ree

I have not been on the bbs in a while (two days ago my first post in months) But I have been reading posts over the last few months: applauding at great news on scans and Neds, etc Saying prayers for those begin another round of treatment...and shedding a tear and prayers for those who have begun another journey... Well today, my brother and I made the call to put my mom in hospice. It will be at home care hospice. The oncologist had gently suggested this for about a month. Now, I know what hospice means, yet I know sometimes things can turn around and 'miracles' can happen. Yet I am a realist, wtih hope and prayer, but still a realist. I guess I thought we would have had more time since the dx before we got to this point, but during these last eight months since the dx, it has been one step forward then two or three steps back ... we never was really able to get the treatment started continued and finished liked we had hope as medical issues added complications to the mix. That irks me as much as the disease and its effects on my mom So this Saturday I will go home to be with my family so I can be there when the hospice nurse makes her evaluation visit on Monday. One good thing about this is my ma can still see her oncologist every other week for her blood work, if she chooses or the hospice nurse can do it. My grandmother has been my mom's primary caretaker but it is taking its toll on her and my brother, the other caretaker of my mom. Yeah grandma thinks she's 25, but hey...lol My last visit was about 3 weeks ago and there was a marked decline in my mom from my previous visit which was few months ago although phone calls were the norm during those months Mom's appetite is now almost nil althought she never was a big eater at all. Though there are days when she eats. Her legs are very weak. For the week I was there in July I was worn out so I can only imagine what my grandmother feels. The sad thing about ths is up from about Mid- May till about early July, the oncologist had hoped my mom would gain weight and be able to resume infusion chemo, but her weight, albeit low, was stable till about the week before my visit when she lost a pound. Like the doctor told me "No way to infusion chemo if my mom's weight is too low." I think he made the correct recommendation about hospice though although I really didn't like it, my mom will get what she needs and my grandmother will get the help she needs as well. My brother and I are thinking alternative medicine as well. (like I said I do have hope and prayer) I do believe there is something to be said for it. So I'll be heading home this weekend and will probably be there for a week to help settle us into this phase of our lives. So onward we go as a family... Love to all Ree

Thanks Carole I hope this help screening helps to save many lives from this disease. About the link/ article: the one thing that really made me happy about this was it is focusing on screening... early detection for lung cancer and then to do a follow up scans...this is what will really help to make a different in curing this disease....early detection and regular CT scans. I also want to say although I have not posted much in the last few months I have been reading and you are one of the people whose posts I look forward to reading. Your attitude is amazing. Ree

I read this today in the paper and found the link on the web. This is awesome.. http://www.ajc.com/search/content/busin ... lstar.html

Patti, This post of yours reminds me of conversations I have had with my mom since her DX. I don't think going through this disease with a parent is easy no matter the age of a child. Believe me it is not. I have recently allowed myself to cry like a baby when I think what my mother has gone through so far and then I cry at work sometimes for 'no reason' then I fluff up and say "How blessed I am." How blessed that this woman was chosen to be my mother and no disease will ever take that nor her love from me and it won't take that from your son and you either. And while it is true I had my mother for all of those things/events you mentioned, this disease threatens to take my mom from me and I am not ready to say bye. No child is ever ready and unfortunate- ly, no parent can ever protect their child from that possibility no matter how old or young. My mom and I have plans and life to live and this disease threatens it all. My mother has apologized to us for all she is putting us through, especially me since I live far away. And my words to her are the same, "You have NOTHING, not one thing to apologize for." Yes, smoking is ONE cause of this disease but it is NOT the only cause. If blame is pointed, point it at the legal tobacco products,etc but NOT at yourself Patti, EVER(that's an order...lol) We children are so glad to be here for our parents at this time. I was able to rub lotion on her legs and cut her toenails when her vision was blurry from the brain mets pre-surgery, it was a an A-HA moment (for lack of a better term). I was able to be there and take care of her; it was sad and yet it was a beautiful. I can't describe it. But do I wish it came to that? NO. But I was able to take care of my mommy and that says it all. We know our parents would never want to see themselves nor their children go through this-they love their family/children so much. One thing my mom does is let me talk about what I feel and she istens and offer advice and her own feelings and I digest it and I do the same for her. We keep the lines of communication open about our feelings- BUT I don't cry over the phone in front of her, I save that for after the call. We did cry a couple of times in person, but that was mostly during the earlier days right after dx; we are in warrior mode now. But what I have found is it is her attitude that keeps me going and it's contagious. IF she won't fall apart, then how can I? We children, no matter our age, are very resilent and we will walk whatever road for and with our parents arm-in-arm. I think your last paragraph says it best to a degree, lessons of value being learned, just as my mom is teaching us with this. Yes Patti, there are other ways we children would have preferred to learn these lessons I don't deny that and... We have fears for our parent as they fight this disease, but you are NOT robbing your child of anything good-and my mom is not robbing her family of good things either.BELIEVE that. (that's another order...lol) As a matter of fact, something I said to my mother right after I got her dx, "You are my mother." and she said "And I always will be." And that's all that matters for nothing, not even this disease, has the kind of power to take that away from any child and their parent. Besides, my mom is a Scorpio, need I say more...lol. Patti, you are a warrior and I admire you. You and yours will be a-okay---you BELIEVE that. *Hugs* Ree

Thanks for posting this. I got the chance to watch it last night (Sunday)-it was informative, poignant. A couple of things that stood out for me in the show. -The scene with the young woman battling pancreatic cancer when she and her family were discussing her limited (no more) options and the reactions of the different family members especially her father. I could feel his anger and fear-as a family member with a loved one currently battling this disease I understand everything he was feeling and saying. But what struck me the most was what his daughter said about it. She understood where here father was coming from because he had lost his wife, the patient's mother about five years prior to lung cancer and he, the father, now that they are facing it again was not leaving any stone unturned. I got the feeling the daughter, the patient, accepted that there were no more medical options for her (maybe a trial, but I got the impression her oncologist he did not feel the treatment would be beneficial, possibly harmful).The patient felt she had to continue to pursue treatment since others wanted it. That whole scene just was emotional. And of course the narrator and her husband's story...that was difficult to watch as well. Also, this show displayed the other side of the equation, the medical personnel perspective. There was one doctor, he had been in the profession close to fifty years and to hear him talk about cancer and its treatments from his intern days to the present was like a mini medical history lesson. Once the show ended, Linda Ellerbee, a breast cancer survivor hosted a show with a panel of four doctors each one a cancer survivor. Again this showed a unique perspective of this disease as a medical personnel and a cancer survivors; it was very informative. I hope everyone gets a chance to see this show-it was informative, poignant and unfortunately too real. Ree

You are correct about the use of RFA on lung tumors. Here are links on onctalk bbs to a FDA page http://onctalk.com/?p=359 and http://onctalk.com/?p=949 which talks about what treatments RFA was approved for and the reports of fatalities using RFA in the treatment of lung cancer. What I got from the fda recommendation was rfa for the treatment of lung tumours should be done in a clinical setting. Hope these links help...

Hi Paperback, My mom developed blood clots after her first chemo-let me state, I am not saying the chemo caused the clots, I'm just saying that was when they developed/diagnosed. She had been complaining of a pain when she breathed deeply or coughed about a little over a week after her treatment. Her oncologist, whom she had an appt with anyway for bloodwork, noted my mom's symptoms, an immediately did a scan or xray and saw not one, but two blood clots; one in each lung. When she got to the hospital they found another blood clot in her leg. It's true unfortunately, that blood clots is one of the effects of this disease. But the bigger issue was the treatment, blood thinners, for patients, like my mom, who brain mets. Blood thinners can sometimes cause problems for a patient with brain mets. Thank goodness that complication is not a problem with my mom. In our case, we had to weigh the potential damage from blood clots travelling or the possible damage from the treatment(blood thinners) and the brain mets. Again, unfortunately, I am learning, this disease will sometimes have you make decisions that seem like a rock and a hard place. The immediate issue for us right now is my mom's chemo had to be delayed while she is hospitalized. Hopefully they will start again very soon. Paperback, I have only been on this journey about four months and I am taking a guess that you and you mom and family have not been in this too long either. I have found everything concerning my mom has me either angry at this disease or ready to cry, or something... The only thing I know is I Have faith!!! and my mom and I are and will enjoy every day... Stay strong and positive!! You and your mom, like my mom and I, have many many more great memories to create... Have faith!! *Hugs*

Carrie, To you and your family, may faith comfort you all at this time.

When I read this my mouth just hung open...I'm so sorry. My thoughts and prayers are with you and your family at this time. Ree

Golden pothos (sp), ponytail palm, lucky bamboos (straight and curly) and the rest I don't know their names, they are non flowering plants, just green and pretty. Ree

Hi Mandy, I am relatively new to all of this, but from what I have learned/read, lung cancer can spread to the brain regardless if it is sclc or nsclc. My mom is nsclc and she had 3 mets to the brain at diagnosis. I have read of other nsclc patients who have brain mets so I really don't know if your onc has that 'fact' correct or not. I have read of other patients whose oncologist ordered brain mri as a tool to confirm whether or not there is mets to the brain as part of the diagnostic process. And in case there is mets to the brain, at least in the case of my mom, the plan is to do this every few months. In just these past four months, my mom has had at least two brain mri, a PET scan, bloodwork (it seems every week), I can't remember all of the tests right now, but my family and I are at a point where we expect a test of some sort a week or every other week. I echo everyone's sentiments here, get a second opinion, better yet just get a new doctor and always get a copy of every medical record you can. Hugs to you and your family.

Love it, thanks for sharing

Just thought I'd give everyone an update on my mom. My mom is currently in a physical rehab hospital to get the strength back in her legs; transferred there about three days ago. While she was in the medical hospital being treated for her blood clots, the doctors did not want her to walk or move too much until maybe two days before her transfer to the rehab hospital. From what my brother told me, the clots are not 100% dissolved, but their current status is such that they will dissolve on their own. I am just so thankful and grateful right now. And thank you all for your prayers and positive thoughts. Btw, those medical questions I posted in my previous post above, I asked Dr. West over on Onctalk bbs. (over on the Brain mets board) Again thank you all for your prayers.

One Hundred Ways-Quincy Jones 52nd Street- Billy Joel ...this is fun

Ah, the things of joy: jewelry making, writing, photography and have recently my green thumb has emerged and getting into plants...

My mom has been a bit nausea since after her crainiotomy in January but she makes herself eat because she knows she has to maintain her strength and weight. One thing I discussed with my brother the other day was to speak with the oncologist and ask him if he thought we should consult with a nutritionist especially while ma is undergoing chemo. I had heard about the sugar thing and cancer, that sugar causes the cells to grow. Just my opinion, but I am thinking that maybe, just MAY be because of PET scans and the fact that it is the sugar in the PET scan injectable that "lights" up the suspicious regions in the body, maybe an assumption was made that it causes these type of cells to grow. I don't know, just a thought. I've asked a couple of doctors about this sugar link and most do not believe it. At this point I don't think, medically speaking, there is a definitive answer on this. However I choose to err on the side of caution and since my mom's Dx we have been watching/reducing her sugar and her salt intake as well. One thing I have noticed about my mom is she doesn't like tomato sauce as much any more, she used to love spaghetti and meats(tomato)auce but doesn't anymore. Maybe in time she will get that loving feeling back for her tomato sauce. I am thinking about getting my ma, possibly a Mothers' Day gift, is a juicer. Might get one for myself as well. But you are all so right, with the internet there is a lot of information out there some reliable some so-so and some just outright bogus.

Thank you all for your thoughts, encouragement and prayers...let me give you all an update Last night around 9:30 pm I called the hospital to see how my mom was. I call and the woman is like, "oh your mom is not admitted yet she is still in the ER." Now I am starting to get pissed. My grams took my mom to the ER around 9am straight from the onc's office and stayed there till around 4:30pm so now it's five hours after my grams has gotten home and my mom is still in the ER So, trying to retain a little cool and decorum, I ask the ER nurse, "Please tell me my mom is NOT sitting in a chair all this time?" "No, no she's in a bed and being treated, it's just that we are overflowing in the ER with patients needing a bed and there are not enough empty beds yet." I hang up and call my brother and now I can get a little hysterical...I am practically begging my brother to spend the night in the ER with our mother. I just didn't want her to be alone in the ER. It is times like these that living so far away eats at you. Okay then I here that the attending doctor in the ER wanted to give my mother morphine and got a little huffy with my grams over it. (Later found out that wasn't exactly what happened. and my mom is on percicet not morphine) So all last night I am not exactly a happy camper since that call to the hospital. Then of course I do this morning it's call the pcp to let them know about the ER/hospital admission. Call the hospital again around 2:15pm today, my mom is still in the ER now this is over twenty four hours since they first arrrived and almost twenty four hours since my grams left my mom at the ER. Believe it or not I am cool, maybe becasue I am at work. I ask this nurse, what is the problem? Same as last night, overflowing with ER patients needing a room and not enough beds. As beds become available patients are sent to a room based on the time they arrived at the ER and the severity of their illness. But I am assured my mom is being treated and is stable. I call my brother again and leave him a message, it turns out he is en route to the hospital at this time. He arrives at the hospital roughly about 30 mins after I called and FINALLY my mom has a been in ICU. My brother stays with my mom while she eats everything given to her. He calls me as soon as he exits the hospital and gives me the details of everything. But here is the kicker...after throughly examining my mom the doctors found my mom had another clot--this one in her leg, in addition to the ones in her lungs which were detected by the scan ordered by her onc. My understanding is she will stay in ICU probably thru Friday and then moved to a regular room on Saturday and Monday will be blood tests and then they will probably keep her another two days. My mom told my brother to tell me to keep calm and there was no need for me to rush home So now I feel a little bit better, but this new normal really doesn't do it for me...The old normal was pretty darn good for all of us...and yet I am grateful, if that makes any sense at all... and very prayerful....again thank you all for your support and I will keep you'll posted. *Hugs*

Okay my mom went to the oncologist for her bloodwork in preparation for her next chemo. While there she told him about the pain she was having in her chest over the last few days. Dr.Mac did a scan and detected not one, but two clots, one in each lung.Btw, the right lung is the diseased lung only. So he had her admitted right away to the hospital and that is where we stand right now. Is blood clots in the lung normal with this? How long before we know if the clots are dissolved? Is the chemo the cause or the disease or both? Could it be caused by lying down too much (sleeping)? Please pray for my ma. Thanks

Thanks Patti And you are so right-I don't listen to statistics. At first, I guess I did put alot of stock in the stats and everything seemed so bleak. Even the intial doctors that examined my mother after she was admitted from the ER were not exactly inspiring. But to be fair, one of the tumors (she had 3) on her brain (occipatal lobe) was HUGE. But I still would not accept their perspective on prognosis It was my mom who was the inspiration. I said to her, "Ma, are you ready to fight?" And she said, "Ain't no wussies here." And I think that helped to get me started changing my way of thinking. Another person who is very encouraging is my mom's oncologist (God Bless him!!!) After the first consultation in Dec 07 with Dr. Mac. He said (not in a bragging way) "You know, I have some patients who, by medical science, should not be walking around today." Those truly changed things for all of us especially my brother. While my grams and brother were giving him kudos on his 'successes' Dr. Mac says, "It's not me, it's HIM." pointing his finger towards Heaven. Another thing Dr. Mac said as he was outlining my mom's chemo was, "After the chemo treatment, we will continue on to those treatments that will continue to sustain your mom." He always speaks with hope and encouragement. I also have to thank my mom's neurosurgeon, Dr. Miller. My mom was admitted to the hospital after her seizure so he never consulted until that moment. He spoke with my grams to get up to speed on what was going on. From what I gather (my interpretation) it seemed Dr. Miller felt the other doctors, (not Dr. Mac) were kind of dragging their feet (again this seemed to go back to intial negativity surrounding the initial Dx). His words were like, "What are we waiting for?" in response to the surgery. So yes Patti, I don't let the negativity linger, I am realistic, but I just keep praying and asking for all the good things and medical personnel to come my mom's way. But it is a journey and you have to not only stay strong but be proactive in researching things. I think that helps me since I am so far away from home. As my mom told me back in early January, "Whatever happens, we are going to be okay." Ree (Phylsgirl)

Thank you Sandra for your encouraging words and you are so right, it is a life changing journey for sure. It seems the date of my mom's Dx was a dividing line for me in this journey of life, does that make sense? I guess that is what is meant by the "new normal" for all of us. Ree (Phylsgirl)

Thanks for the welcome Reece101!!! >>>Wow! I must say you certainly write well for age 6!!!<< Yes I agree Dr. West and his colleagues over at Onctalk are amazing. I have not posted over there yet, I am in "student-mode" right now soaking up as much knowledge as I can get at Onctalk. As soon as I can, I plan on making a donation to GRACE. Ree (Phylsgirl)