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    Both Mom and I love to travel to our summer home on the American river...or to our family estate in JAMAICA.

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  1. tjrasMOM


    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 could have written this. This is exactly what I've been doing as well. My mom has kept in touch with her high school friends -- class of 66'. They emailed me yesterday and said when I was ready, that they would love to take me out to dinner to share tears, love, pictures and stories of my mom. Our last trip to Jamaica this past May was with 2 of them. And her very best friend is one I talk to every other day. They have been best friends since the 7th grade. Her friend is so broken. I went on a hike with my aunt yesterday (Mom's sister) and we all feel so robbed. I too am learning about my mom. Mom had LOTS of stuff...matter-of-fact she joked a year ago to her best friend about how ticked off I was going to be when the day came that I had to sort through her things after she was gone. She held on to EVERYTHING. LOL. But this week I pulled out a couple of boxes, just with old letters, cards, etc. I even found a love letter from my dad to my mom when they were 20 & 21. (They've been divorced for 32 years now) - but MAN, am I learning new things about her as a woman. I'm discovering the "woman" -- not just the mom. I've had to get some business done this week...had to sign the papers for her cremation...had to arrange the memorial service and just get back into life. I'm taking one more week off work just because..just because I need to. I'm an only child and have decided to have her memorial service after the holidays. I want to honor her as best I can - with beautiful photos, etc. and I don't feel I can do by rushing it all before Christmas. Plus, I'd rather not mix it in with the holidays. I've been focused on Mom for the past 3 months when her health started to decline. I need to focus on my 7 & 9 yr old little girls now. Mom would have wanted me to do that. So, we're having her service the same week she would have been 62. Gosh, she was the youngest, hippest, 61-yr-old ever. No gray hair yet, physically active, strong, energetic, etc. Just way too young for this.... Kim, I feel a connection with you too. I'm so sorry you are sharing this pain. I'm so sorry that everyone in this forum is in pain. Today I started to feel good for a minute in the car, started singing along to the CD and was thinking about good things....and then the crying just started out of nowhere. Extreme emotions are so closely connected...laughter and just a sense of feeling good can so quickly change over to emotions of sadness and grief. I feel as though I will never laugh as deep, smile as hard or feel as good.....as I once did. Intellectually I know this is "grief" - but because she's never coming back, I can't imagine this getting better.
  2. Kim, My mom passed the day before your mom, on the 28th. I just posted on the caregiver page, but I'm sure I'll be moved to here. I was with my mom when she passed....we were told by the hospice nurse that we might have a few days to a week. She passed within 20 hours. I too was with her for the past 2 weeks. Never left her house. I just couldn't leave. Even called in to work and said I'd be taking my leave now. I have these bursts of emotional turmoil...and then just sit here staring out the window with no tears. I know I'm numb....and this might sound strange, but some days (it's only been 5) I feel like I should be in more pain. I've been crying for MONTHS, YEARS. And I screamed when she took her last breath....gut wrenching, heart tearing sobs came out of me. Most of the time I can't talk about ANYTHING without crying. And then I'll have a day like today where I just run my errands in a blur...a daydream. No tears, no emotions. Just numb. I feel like I'll never be happy again. I feel as though nothing will ever be funny like it was with my mom. We were best friends...we giggled, laughed and got in so much trouble together....just found the humor in everything. Now I can't seem to find even a smile in anything. It's difficult to read that it gets harder before it gets easier....because when the emotions DO hit, it's unbearable pain. I turned 40 last Monday, became a grandma to my step-son's first born on Wednesday, celebrated Thanksgiving Thursday and lost my mom on Saturday. Because Mom was home with hospice, her sisters & nieces took me out to dinner Monday for my birthday. It hit me in the restaurant when it felt like someone was missing. Here I was with all of the women in Mom's family....EXCEPT Mom. These aunts are like 2nd moms to me....but we are a pack all of us. And now our pack is smaller. And it's MY link to the pack. It's just all so surreal. I'm still in a daze.....and I'm so scared for the grief bursts that have yet to come.
  3. I used to read posts of other daughters, sons, sisters, brother, husbands and wives whose loved one has passed away. They would explain the last moments and I would sit here weeping for them. I could not imagine what they had just been through....I believed my mom would defy the odds. She would live 5-8 years after they thought she had reached their prognosis. But as everyone has said before me, it just happened so fast. In hindsight it just seems like she declined so rapidly. My beautiful, courageous, funny, smiling mom passed away this past Saturday, November 28, 2009. I will copy and paste (an edited version) of what I recently wrote in her Carepage... _________________________________________ Hospice explained Friday morning that because Mom was no longer swallowing, that we might only have a week left. I let the family know immediately. Even though people had just made long drives home after Thanksgiving, they all said they'd be heading back first thing Sat. morning. Friday evening I decided to bring my daughters over to visit with their “Nona” and say their proper goodbyes. I saw that Mom’s breathing was changing and that she was starting to cough more. I felt that it was best they’d say goodbye now and have their last memories of her while she still looked at peace. The three of us went in and stood by Mom’s bed holding her hand and rubbing her arm. My daughters asked me to speak for them. I told her that we were all here and how much we love her. How special she is to all of us…. and how much we will miss her down to our souls…We know that she has to leave, that she has fought for so long, but that she has to go soon…. Sydni and Tylar could not have had a better Grandma. We thanked her for everything she has ever done for us…. for being in our lives, for going to Jamaica with us and showing her grandchildren the special place her grandfather was born, for teaching art in their school, for always making them smile and laugh and playing with them anytime she was with them…. I told her that I couldn’t have asked for a better Grandma for my children. When she came over it was like Disneyland was coming to our house. And that these girls think the world of her. We will honor her forever in our daily lives…. we will think of all the things she did for us and with us. We will love her with all of our hearts forever. And we will miss her…..we will miss her every minute of every day. That it is breaking our hearts that she can’t be here forever…. but that I will be strong for her…I will be strong for these 2 little girls. I will care for them the way she and I did together most of the time. We told her how much we loved her and we knew that this was not the way she wanted to continue living. Both girls were weeping silently beside me. We all told her we loved her, kissed her and said goodnight. I had been basically living at Mom's and my grandpa's house for the past 10 days. For some reason I could NOT go home even though I lived 5 blocks away. This was the only night I hadn't slept in the bed beside her. Instead my mom's sister said she's sleep with her so I could sleep with my girls in the living room. At 5:25am my aunt came in and asked if I could help her. She said that Mom had been restless and her fever had gone up. My aunt had been up since 1:30am trying to make Mom comfortable. She had given her morphine twice, had given her a sponge bath and given her some baby Tylenol to bring down the fever and still Mom was moaning a bit. When I walked in the first thing I noticed was her breathing. It was faster and labored. My aunt said this had just started. I remembered with my Grandma when the feet start to darken, it's a sign that the body’s circulation is stopping. When I pulled back Mom’s covers, I saw that the circulation had stopped in both her legs. My heart started to pound in my chest…. she was dying… and I realized we only had hours…. My aunt woke Grandpa and my cousin (who had also spent the night) and the four of us brought in chairs and settled in next to Mom’s bed, rubbing her arms and legs, telling her how much we loved her while weeping quietly. We called my husband, my mom's other sister and her 2 other nieces. All but one arrived within 20 minutes. Seven of us sat there with Mom…our hearts twisting with pain and sorrow, each of us with tight chests and tears flowing freely. Each of us had our hands over Mom, gently rubbing her skin and loving her with our touch. Grandpa was bent over her, his face on the bed, sobbing into Mom’s blankets. As I looked at each of them, I realized that each loved one in this room was feeling Mom being ripped from their hearts in a different way…Grandpa was losing a daughter and watching a 3rd child make this transition, my aunts were watching another sibling and best friend leave this world. …My cousins were losing their aunt whom they loved like another mom. My husband was losing a woman who had been his mom for so many years. We started to whisper stories of Mom…moments we treasured with her, unique traits about her that we would miss. My aunts started to talk about songs they had sung as children. And just as automatic as our tears, they started to sing. Harmonizing songs they sang as children. I have no words that can describe the sound of their voices…. their voices were cracking through the tears but strong with their once familiar harmonies. It was as if angels were in the room with us, helping Mom make her transition…providing her with familiar sounds as she parted. It is not easy to watch someone leave this earth. It is not easy to watch the discomfort of that last hour of labored breathing. You so desperately want her to be at peace…. but are so scared to let her go. There is a sense of panic as you watch each breath escape the spirit’s temple. Her breathing began to quiet and then became shallow. I had one arm over her heart and the other holding her hand. As she took her last breath, my body burned and ached and my helpless and tortured soul suffered. My heart wrenching sobs became muffled screams into the blankets as I buried my face into the once occupied body that was my mother. She was gone. My best friend, my confidant, my warrior queen, my mom….was gone. As the sun came up and the morning continued, we called family and friends. People came and details were handled. My cousin took over and handled the arrangements for me. I am forever grateful for the way in which she took over that aspect of the day. Family cooked breakfast for the kids; people told stories of Mom…laughter, tears, stories, sorrow, and grief…filtered through the walls of the house.... Our Reverend came and brought the family in the room to say a prayer over Mom. He said that, “although her spirit will be with us forever, we will miss her in her skin.” How badly I want her back in her skin, with me, with us. I want her back, I want her here. I want one more minute with her, one more hug, one more “I love you babe”. I want to see her smile and hear her laugh. I even want to see her throw her hands up in annoyance at me or someone else. I want to watch her tear her purse apart looking for her keys for the um-teenth time. I want to see what jewelry she’s going wear with this or that hat, I want her to call me, I want to hear her laugh at all my jokes…even the ones that aren’t funny, but that make her giggle with me. But most of all, I want to ask her what I’m supposed to do now. How am I supposed to handle this? We never talked about this part. She never told me what she hoped I would do or how she hoped I would handle my grief. She hated seeing me in pain…she was always running to be my side to comfort me. But why didn’t she prepare me for this pain? I don’t know why we never talked about this. I need her motherly love right now the most. I need her to hug me…. I need her comfort now more than ever.... __________________________________________________
  4. Reading my post over...I have to clarify....my mom's body is strong in the sense that her vitals are strong. I must be clear that even though she smiles, she also look vacantly at us and sometimes looks right past us. She can no longer walk and can't follow directions if the physical therapist tells her to lift her arm, raise her knee, etc. She has tremors and only yesterday, tried to grab a spoon off the food tray. But we do everything for her. I just wonder if she's in there somewhere....I always wonder. Which is why I tell her how much I love her ALL THE TIME. Anyways, I just wanted to clear that up because when I read over my post...it sounded as though she was physically strong.
  5. Just to update... Mom is not responding to the Provigil. It has woken her up, but there isn't much more clarity. She smiles when I walk in to the hospital room. Smiles at my 2 beautiful little daughters, smiles at her best friends...but she can't speak. Can't tell us what she's feeling or thinking. She's coming home tomorrow and I've ordered hospice. My aunts and I feel that it is time. Her oncologist said gently to me, "I don't think it's unreasonable to have hospice come in now if you're ready. Remember that we don't want your mom to suffer and we are trying to preserve her dignity and quality of life. Hospice will be sure to do that..." We've found a hospice agency that came highly recommended. I think I can see it my mom's eyes that she's scared to come home. She's lost a sister to breast cancer, a brother to AIDS and her mom died from congestive heart failure 4 years ago. Even though her mom was 88 years old, it still didn't seem ok to lose her. She was also an artist (like Mom) and had her 1st art book published when she was in her 80's. There's just been so much loss in our family....it's so hard. But when Mom hears that she's going home, I think she is scared because she feels we're not telling her everything. She feels that we're bringing her home to die. And even though treatment has stopped, I don't feel like she's ready to die. Her body is strong. It's her brain that has suffered so much. The oncologist explained that it's usually not the cancer that takes one's life...but the complications that come with cancer and treatment. He said that the tumors could grow in her brain, causing the heart to slow down and stop. Or it could be a blood clot or pneumonia. He said that he can't tell me how long she has because these things can happen suddenly or not for a long time. He did say that she would most likely NOT have 6 months. I'm off to the hospital now. My heart goes out to everyone who has walked this path before me. I see you all in a new light...and am amazed at your strength and ability to go on. I don't see that light at the end of my tunnel right now....if it weren't for my 2 little girls who need their mommy, I don't know if I'd have the strength to go on. We're all joined and connected on this web site through our pain and suffering. Thank you to everyone who has ever read my posts or responded...or felt the connection that I so often feel when reading other stories. I respect and admire you all.
  6. Kim, I realize you left this message in Sept and it is now November. I'm not sure how things are with you and your mom, but your story sounds very similar. My mom went through WBR this summer and has declined so fast. We blamed it on her being overmedicated, but after many observations and more tests, the doctor is starting to believe that it is in fact the tumors in her brain putting pressure on a part of her brain that is controlling what she can and can not do. I got copies of her MRI and PET scan yesterday and tried to read the reports myself. I did understand that the MRI basically said there was too much movement to measure the mets in her brain. This is because she is always in pain from the lesions on her back. I mean, I know cancer is everywhere...but I still believe that it's controllable. I'm not in denial...I just feel that we're not there yet. And I feel that my mom wants to fight. She can't talk but her facial expressions light up when I walk in the room. She's in the hospital and for the first few days the doctors would come to ask her questions to see how her brain was functioning...they'd ask her if she knew where she was, what her name was, what the dr.'s name was, etc. She only knew her name and her dr.'s name. She couldn't say my name but she stares at me and smiles at me. She can also say, "I love you too babe.." When I tell her I love her. Amazing how some things just won't be taken by the loss of brain function. I feel like this is all surreal. We've ordered hospice and they are actually delivering the hospital bed as I type this. My aunt and Grandpa are getting Mom's room ready at Grandpa's house. She's been living there every since her diagnosis, but we've changed her room because of the need for a hospital bed. I don't know how I pictured things at the end....but I expected her to be with me mentally. I expected to talk to her and go through this together. Now I feel as though she's already gone and we never got the chance to plan for her leaving.... It's sound funny, but we were too busy trying to have fun and forget that she had cancer. Of course, it was always in the back of our minds....but we laughed and joked and took vacations and did what we could to not focus on the future. My heart is bleeding. My children, two daughters -- aged 7 & 9 are watching me fall apart. And I know they are so sad but don't really know how to deal with their grief. Their "Nona" used to work in their classrooms at school. She was the guest art teacher for the past 2 years at their school. They LOVE her and miss her. They always kiss her bald head (hair is just now starting to grow back after radiation) and tell her they love her. She always responds, " I love you too..." But they know she's confused. They've seen her talk non-sense for the past 45 days and it scares them, I'm sure. My heart is bleeding for you too Kim. I honestly can't believe people have been through this and survived this kind of pain. It's almost more than I can bare...so I feel what you feel. And I'm so sorry we are going through this....I'm just so sorry. Tova
  7. Judy... do you think they would also help diagnose when we can't figure out what went wrong with my mom's mental state? Although, we are faxing all of mom's medical records to UC Davis where another doctor will give us a 2nd opinion. I wish we had done 2nd opinions a while ago...not that I don't trust her onc 150%, but who knows what would be suggested, or discovered....etc.
  8. This sounds like how my mom's treatment has been from day one. I have found that you have to push & push. But find an oncologist who will push with you and for you. It is ok to change doctors, to seek 2nd opinions. Tha family and friends must be the advocate for the patient. Blue Cross denied my mom for almost everything. PET scans, MRIs, etc. But her onc pushed and pushed until we'd get it covered. We'd even rush some tests at the end of the calender year if her deductible was going to start over at the beginning of the new year. (Maybe Blue Cross knew that they wouldn't get their $7500 and this was why they'd deny claims) -- but thanks to our amazing dr., we have gotten through it. It is not easy. The waiting is the hardest part. And insurnace companies do NOT help. They cause more pain, but that's why it's so important to find a doctor who is willing to fight with you. I'm so sorry you are struggling through this difficult time. But just remember, the doctors are not God.....you will need to start researching on your own -- or coming here and posting questions. There is an amazing group of beautiful and wonderful people here who will ALWAYS help you. =) I speak from many experiences. Tova
  9. Ned, I read everything you said a few weeks ago. Even read it to my aunts. I think about it every day. And as our dr.s have said, this could wear off in the future, but let's try to get it done faster.
  10. This cancer journey has been an emotional rollercoaster ride from the very beginning. Receiving a new plan or a new treatment option has always put us in the up swing of the emotional ride. After yesterday's doctor’s appointment, I feel once again, on that up swing high.....I'm ready for another fight. I just hope Mom still has some strength in her to lead us into battle again. My last post was so hard to write...but today, I feel myself exhaling, now that we have some hope. As difficult as it has been to get Mom out of bed and to her doctor's appointments these days, my aunts and I managed to take her to meet with her Oncology Radiologist AND her Oncologist. Her onc had mentioned at our last appointment that he wanted her radiologist to go over the MRI in more detail with us and also wanted him to examine Mom. While we were waiting in the lobby to be called in, I ran to get Mom a hat that volunteers drop off for chemo patients. As I was walking back to the lobby I ran into her onc in the hallway. He asked how Mom was this week and I explained that there hadn't been much change since we put her on the steroid again. After out last appointment with him, so many questions started to come to mind. I wanted to know EXACTLY what the cancer was doing, how big tumors were, what the PET report said in detail (since I can now understand the medical abbreviations on the PET report) etc. I asked him if Mom's cancer had metastasized in her body. He explained everything in such detail that it was all so clear….finally. He said, “No Tova, her cancer has not metastasized all over her body. Her cancer is a metastatic cancer, but it is not spreading uncontrollably at this point…..It is starting to mutate again and find other areas. But if you remember, when your mom was first diagnosed, we did 6 rounds of chemo. It drastically shrunk the tumors and killed many cancer cells that were floating around. We were able to stop treatment, to take a break, because she was practically in remission for about 18 months. Then we found lesions on her spine and pelvic bones, so we did another round of chemo last spring. But we were never able to check how that chemo was working, because we were then focused on her headaches. Once we found that the cancer had spread to her brain with multiple brain mets, we put all our energy and treatment into the priority of the dealing with the brain cancer. Because of that, we had to temporarily stop her ongoing dose of Avastin. Avastin does not kill cancer cells, but holds them from progressing. We stopped Avastin in July when she started radiation. Because she has not had more chemo and because Avastin was discontinued, what we are currently seeing are the tumors starting to mutate and find ways to grow again. We are not holding them at bay, keeping them from growing......But we can start this kind of therapy again. This is what Tarceva could do for her. But Tova, what we are focusing on now, is the fact that your Mom is ‘not present’. She is not mentally here with us right now. We need to bring her back to us before we consider more options that would attack the cancer in the body. The brain function is our top priority. If we want to talk to other doctors, other specialists, then we need to do this. We need to find out WHY she appears to have brain damage and we need to figure out how to bring her back before we fight the cancer. We need her present in order to fight with us.” Suddenly, it was all so clear. I understood where we were, what our focus was and what the main concern was. We then met with her radiologist and he did some tests with Mom. Asking her to touch his finger and then her own nose. Asking her to touch her thumb to her other fingers. Asking her to do it with her right hand (after she had finished with her left hand). These tasks were difficult for Mom. It took a lot of concentration to comprehend and do what he was asking. He asked her how she was feeling and after some delay, she said that she feels like she comes in and out. That she’s confused. He explained that in the thousands of patients whom he has treated for brain tumors, he has never seen radiation side effects this severe. Most radiation side effects are memory loss and usually they don’t see the effects take place for about 6 months to a year following treatment. It’s only been two and a half months. He believes that this has nothing to do with radiation. It was not caused solely from radiation and the fact that some tumors have died and others are stable for now, would mean that the tumors are not causing this either. He explained that the tumors that have not yet responded to radiation are no different than they were when we first found the brain mets. So, if it were these tumors that were causing this problem, we would have seen symptoms back in the summer. He said it could be a combination of everything she has been through in the past 3-4 weeks. Being overmedicated on Hydromorphone (especially since she is highly sensitive to substances), combined with the steroids being stopped too early (which could have caused the brain to swell), combined with some radiation side effects....etc. His opinion was that it appeared to be a chemical imbalance in the brain at this point. So, where do we go from here? He said that because this is a neurological problem, most doctors would send her to a neurologist. But he said, and I quote, “I’m going to be blunt here, but in my experience, neurologists are pretty much useless.....They do a lot of tests, but then never come back with any significant answers or solutions.” We all laughed. My aunt made a comment that she dated a neurologist once and that she agreed with him. More laughter. Then he said, “Well, I too have an ex who is now a neurologist and maybe that's where my stigma comes from” Again, we were cracking up!!! Gotta love a doctor with a great sense of humor. =) We discussed our options: 1) Let it go away on it’s own and let her brain return to normal, which it might do over the next 6-12 months. 2) Put her on a medication used for Parkinson's disease. It has been very successful with other neurological issues. Or 3) Start her off with a very safe, lower than normal dose of a drug called Provigil which stimulates brain stem activity and could possibly bring her back sooner. He stepped out and discussed it with her onc. They both agreed that they wanted to start her on Provigil. Once we get the new insurance pharmaceutical plan in place with Medicare, we'll pick up the prescription. It gives us hope and hope can make miracles happen. I would love to see Mom come back. We all would. And then, we can possibly get her on Tarceva to keep the cancer away for as long as we can. Right now, our job is to keep up the nutrition and keep her physical strength up as much as we can.
  11. Bonnie (from Bonnie J Addario Lung Cancer Foundation) works very closely with LUNGevity! LUNGevity had a booth set up at her walk in SF this summer. I wear a LUNGevity bracelet all the time now. Bonnie has nothing but AMAZING things to say about LUNGevity! These 2 organizations are making such strides for lung cancer. =)
  12. I can't believe that in 3 weeks I have watched my mom become this sick, frail, suffering woman. She was so strong for so long. I posted a couple of weeks ago (or one week ago?) about her being overmedicated. Well, she was hospitalized for 3 days and then sent home. She started to become clearer, but now we realize it only lasts for a bit, and then the fogginess comes back. She mumbles and doesn't make sense most of the time, but you can tell she knows she's not making sense because she'll keep trying to correct herself. We learned at the hospital that she was severely constipated. It's no wonder being that she was on pain pills for 2 weeks straight. She has been curled up in a fetal position moaning and talking about the pain. We assumed it was gas. When we went to see the oncologist I finally put her in a wheelchair because she's lost so much muscle she can barely stand up anymore. When he examined her he tapped her body and she said that her hips and lower spine hurt, NOT her stomach. This was new news for my aunt and I because we really thought she just needed to go to the bathroom. He calmly said that this could be atrophy setting in to her muscles from the lack of movement for 3 weeks, OR it could be the cancer that was found on her spine and pelvic bone back in January. He said we needed another PET scan since she hadn't had one in over a year. But that appointment with him was Monday and it's now Thursday. He had us get her on some anti-seizure medication as well as some strong laxatives. And ordered AIM for her (Advanced Illness Management) -- it's basically a home nursing care service. He also ordered physical therapy to help her regain her strength in her legs. But it's like the laxatives all set in at once and for the past 3 days, her quality of life has become so poor. She can't use the restroom alone, can't dress herself, is constantly needing the restroom so she needs someone there 24/7. I stayed the other night and we were in the restroom ALL night long. Changing her clothes, washing laundry, etc. I finally have disposable undergarments now. I look at her and I'm petrified and I feel like I'm walking around in someone else's life. She has lost 35 lbs, won't eat, is constantly talking about the pain, talks to her deceased mother....and then every once in a while, she'll make some joke about what we're all going through right now. (She has always had the BEST sense of humor and always been so tough). The other day I was saying to my aunt while we stood in Mom's bedroom, that maybe the home care nursing service could help her with an enema, she opened one eye to look at me and said, "You're going to do WHAT with me?" I kind of giggled and said, "No Mom, not ME, I was talking about the nurse." She said, "GOOD! Because I have to draw the line somewhere!.....Oh this is getting fun.......isn't it?" Then dropped her head back on the pillow. We all started laughing. When we were in the hospital we had a very handsome male nurse. He was about 6'5", 35 years old, with the body of a model. My 2 aunts, my mom and I were all huddled in her little ER room. He came in and every time he'd talk to us and then leave, we'd all glance at one another, raising eyebrows and giggling. We all agreed he was pretty. =) So when he said he was going to start an IV, I mentioned that she has a port. He said, "Oh good, that makes things easier for us....So, let me get some things here and when I return I'll access your port." As he walked out Mom sits up and whispers in a low, sexy voice just for us to hear, "You're going to access my WHAT?" She had the biggest grin on her face. We were all hysterical until he walked back in. Then we all hushed and acted as though nothing had happened. But those moments are fewer and fewer. The pain has increased and we're so lost with what to do. The pain pills caused the discomfort of constipation, but now she appears to have real pain, she has no control of her body, she can't walk, she won't eat.....and I feel so desperate and so helpless. My aunt and I managed to get her to her PET scan appointment today but MAN, was that hard. She kept complaining of the upset stomach and kept asking for the restroom. By the time I'd get her in, it was too late. The technician was waiting for us....{{{big long exhale}}}}. I think the most comfortable part for her was when he finally got her up on the bed, wrapped her in blankets, secured the strap around her and told her she could go to sleep for 30 minutes. Even with her frazzled mind most of the time, I did catch something she mumbled when I was talking with the technician about the procedure and her discomfort level. He was saying we could reschedule because of how upset her stomach was. But I knew her oncologist was waiting on these results to make the next move. So, while we were talking, I heard my mom say under her breath, "...why are we doing this anyways....we already know what they're going to find....." But she was leaning over and no one else heard her but me. I'm not the same person I was 3 weeks ago. That has all changed. I have sunk into chronic depression and can barely find my way around at this point. I have 2 young daughters, a 21-year step-son and a husband who are all just watching me fall apart. Not to mention my mom's nieces, cousins, sisters and her 96-year-old father. I work and am currently in a teaching credential program. I spend every moment I can up the street with my mom at Grandpa's house. People tell me how sorry they are, how they don't know how I do it all. They say I'm handling this all with so much grace and that I am her rock. But I always think, do I have a choice? And wouldn't YOU do the same? This IS what we do for those we love. We don't give up, we don't say 'I'm sorry but I can't' -- we do whatever it takes to preserve our mother's or father's or husband's or wife's dignity. We don't flinch or blink an eye. We don't put ourselves first, we sacrifice and sacrifice so that we can eliminate their pain, take away any suffering we can, make them smile when we know they don't want to....and we do everything we can not to fall apart in front of them. We love them with everything we can. I walk around now with constant flow of tears on my cheeks. It never stops. And I'm an adult education teacher for ESL students. They may not speak English, but they know tears. Tears are universal. They see my pain and even though they can't communicate with me, so often, they come up and just touch my arm or hug me. The other day I was teaching a lesson and smiling while I talked......with tears rolling down my face. I'm raw all the time. I'm just shocked that people walk around this earth in this kind of pain and still survive. I can't believe other people have been through this pain and survived. This pain is unreal. Whewwww. Thank you for letting me get this out there. This board really is therapy.
  13. Ned, On another subject....How do you get 2 pictures up? I love this new picture I just took of my mom cuddling her great-nephew, but I'd love to keep one of us up also. Thanks ~Tova
  14. I forgot to ask Ned...was there anything they needed to do to clean out your MIL's system from the drug interaction? Or did they just let it happen over time?
  15. Judy, I'm so sorry you too have experienced people who just don't think before they speak. You are right, Mom's pulm has absolutely NO EMPATHY. I don't know if he ever did. You want to know the crazy thing? We live in a somewhat small suburb area, just 20 min from SF. People know each other around here. Plus, Mom was raised here. She raised me here until the 5th grade and then moved us to Oakland. When I got married I moved back to this town and when she was diagnosed, she moved back in with her dad (who is now 96). So, my mom and 96-year-old grandpa live just 5 blocks away. But my point is that people talk and you will always run into to people who go to the same doctor, dentist, etc. Because we have a hospital here in town, many people have the same doctors. So, this pulmonary doctor is known. I've run into people who say, "Oh he's a very good doctor.....very knowledgeable." OK, yah fine. But how's his bedside manner? He's one of those people who just look at the ground when they're talking to you or look past you over your shoulder and just babble about a ton of useless information. I took Mom in for her flu shot a few weeks ago & while we were there I think I learned the entire history of the flu, vaccines, other strains we've been exposed to....and then he just goes on to a new subject like AIDS without even pausing for a breath. And we got the whole history of that.....He's a walking encyclopedia. Filled with facts and figures. But he views the world from a statistical point of view. Mom was always a statistic to him. Just a matter of fact....with no personal connection. That's fine if you're on a medical research team, but not if you are dealing with terminal patients.
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