Hi, I have been reading for a little while and finally decided to post. I admit I am having a difficult time reading through all of your stories, as it is a sign of what lies ahead for us...
In February my mom started having shortness of breath, wheezing, coughing. The doctor she saw told her it was asthma and it would never go away.
She started having pain - hip pain, back pain. Severe, crippling pain. She swore she had broken ribs. One doctor told her it was arthritis... another sciatica...another a pinched nerve. I convinced her to visit a Pain Clinic to see if they could help. One of the first things they did was a CAT scan. She soon got too sick to travel to the clinic, and after one epidural injection she did not want to go back there.
The confusion and memory loss started soon afterwards. We had my mom tested for Alzheimer's. She was sent to a neurologist who said the pain and the confusion were not related and it was a coincidence. The neuro sent her for a bone scan to look for cracked bones.
With in two weeks, she became slightly incontinent on top of everything else. She is very thin and frail, half of what she eats comes right back up. She is severely thirsty ALL the time. She is tired and sleeps often. Her legs are weak and she can barely walk. We had to get her a wheelchair to take her to appointments. She never knows what day it is. She forgot how to check her email, dial a phone number....
The bone scan results showed numerous hot spots. The neuro told us flat out that her pain is a bone issue, not a nerve problem and there was something growing in her bones. He sent her back to the doctor that referred her to him.
Yesterday was that appointment. Doctor told us bone metassis was to be considered. We mentioned the CAT scan from the pain center a month ago, and this doctor was able to get a copy with in a few minutes. It shows a large mass on one of her lungs. I still can not believe that NO ONE called.
Today she is seeing a pulmonary specialist and will have a lung biopsy. My mom is also having a CAT scan done of her head, and they are also looking to see if there are "issues" in other places.
I am having a very hard time. I am an only child and my mom and I have always been so close. Just a few months ago she was strong and able, and now she has wasted away to nothing. We do not know just how bad it is yet, but my guess from the shape she is in, she has had it for a while. She says she will fight it, but I don't know if she can stand treatment. I keep thinking that this is not how the story is supposed to end.... this is not how her life is supposed to end. I have a one year old and a three year old whom my mom ADORED and it is difficult to think they won't remember their MeMe and how much she loved them.
I'm sorry to hear about your Mom. Hearing what you're going through brings back so many memories of what my Mom went through in the beginning.
I felt the same way as you do with my youngest child. She was 2 when my Mom passed away and I was afraid that she wouldn't remember my Mom. She does, even after a year and a half of my Mom's passing. We look at pictures of Grandma all the time and I tell her some of my memories I've got of her and Grandma doing things together. My 11 yr old daughter also talks about the things that she used to do with my Mom, and shares her stories with my youngest.
I am really, really sorry about your mom. I have been through all the things you have already mentioned several times with my mom who has SCLC
that was diagnosed in Dec.2006. If you have seen any recent posts, you will know that my mom is probably near the end as she has not eaten for over two weeks. She is in really bad condition right now.
I can only offer you my support and prayers at this time of extreme difficulty.
Take care...and we are all here for you.
I am so sorry that you are going through this. I just went through this with my mother. In Feb.06 my mother had woke up one morning and started having very bad dizzy spells and couldn't even walk, my father brought her to the ER. They just took blood from her and they told her that it was vertigo. They gave her some pill and sent her home. Meanwhile for a while my mother had complained about headaches, dizzy spells, nauseas and also knee and back pain. About 4 years ago she had a hard time exhaling, so she went to her primary doctor who is a pulmonologist. She had did some pulmonary function tests on her and she told her that she had asthma. She started treating her with Advair and Nasonex. My mother took that for a while. Then she stopped taking the advair and she was put on singulair. Sometimes my mother would get out of breath walking up my stairs or sometimes walking up a hill when she picked my children up from school, also when it was humid out she would get out of breath, so she blamed it on her asthma. She also was very tired alot, but she was taking care of her 89 yr. old mother at that time so she said that it was probably from taking care of her. My mother could never keep her eyes open past 9:00 P.M. She used to always stay up late watching TV. She also said that she would cry very easily at sad movies on TV. She also had this weird twitching in her chest when she would try to go to sleep at night. She did tell me that she didn't feel right inside her body. I told her to go to her doctor and she did. Her doctor told her it was stress and gave her an antideppresant. My mother still wasn't feeling right. She had went to her yearly physical in7/06 and her doictor told her that she was very healthy, she even had a chest xray and that came back normal. Two months later, she woke up on a Sat. morning and she was very tired and she was getting dizzy and started seeing double vision. My father brought hert to the ER and they did a brain scan and they had found many tumors on her brain. They didn't know where it was coming from, so she had a chest xray done, which had showed nothing. They did a cat scan of her chest and that is when they found a tiny lesion on her left lung. They really weren't concerned about it because she wasn't having any breathing issues at that time. They were really concerned aboiut the tumors in her brain, so right away they started doing radiation to her whole brain. She neede to have 15 treatments. After her treatments were done they did another scan of her head and it showed that her brain was clear. A liitle while after that my mother started having swelling in her legs, so my father brought her to the doctor and he did some tests and my mother had a blood clot in her leg and then they checked her chest and she also had a blood clot in her lungs. She then had to start taking cumadin. A little whike after that she had pnuemonia, so then she had to have oxygen. She had got better from the pnuemonia. Then she started having chemo to the rest of her body. She had to have 6 months of chemo. After those treatments were over, she had another pet scan and it showed that everything was clear. Not even being off her chemo for one week, she started having severe pain in her jaw on the left side. She also had a numb feeling. She told her oncologist and he sent her to her dentist. The dentist checked her teet and he couldn't find anything wrong. She was in severe pain. She couldn't eat, sleep or even talk. Her oncologist told her that she probably had an infection and he put her on antibiotics. That did not even help her at all. Her oncologist sent her to an oral surgeon and he told her that my mother had osteocronosis of her jaw. He said that it sometimes comes from a chemo medicine. He tokk her off this one drug, but it still didn't go away. She went back to her oncologist and he gave her s psin patch for the pain and that didn't really help either. I also remember her complaining that she couldn't her that well either. They told her that it was a side effect oif the radiation treatments. My mother started hallucinating when she had the pain patch on, so the doctor had lowered the dose, but she was still hallucinating alot. My mother had a massive stroke in 5/07, she was taken to the ER again and they had given her a shot for the stroke. She seemed to get a little better. Her oncologist had another oral surgeon take a look of my mothers jaw when she was in the hospital and that oral surgeon did not like the looks of her jaw. He told my father to bring my mother to his office after she gets out of the hospital. My father took her to him and he did a special test and he found a massive tumor in her jaw bone. What really makes me sick is that her oncologist told her that it was not cancer in her jaw. He told her that her jaw kept lighting up on the pet scan, but he said that not everything that lights up on a pet scan is cancer he said that it could be inflammation. I had noticed a few weeks after my mother's stroke she started getting weaker and she really didn't want to eat or drink that much. She started having severm pain in her lower back. She had to get another scan and then the doctor said that it was back in her chest and then it was in her L2 and L3. The doctor said the only thing that he could do for her was to radiate her jaw for the pain and radiate her hip for the pain in her lower back. The radiation didn't really help. As each day went by she was in so much pain that you couldn't even touch her They tried to take out the catheteo pick her up and bring her to the bathroom. She then started hallucinating alot and she started losing alot of weight. She really starting not knowing if she was going to the bathroom. On Friday July 13th she was so bad, we took her to the ER agsin because she looked like she was dehydrated. As soon as we got to the hospital, she started having IV'S. The doctor thought that she had a urinary tract infection so he put her on antibiotics and put a catheter in her. Well it turned out not to be an infection. They tried to take out the catheter, but she couldn't go to the bathroom. I did notice at home that she was having a hard time swallowing. My family thought it was because she was lying down and she only had her head propped up. I kept telling my father that I thought it was something else. I had mentioned it to the nurse and she did a swallow evaluation test on her and the nurse told us that her muscles were not working properly anymore, so they had to take her off of food and drinks because they didn't want her to choke. One day the doctor told us that my mother was stable and then two days later he told my father that my mother was lucky if she had two weeks left. Nobody told me, because they didn't want me to know. Until the next day I went to see my mother and she didn't open her eyes or talk for three days, so I questioned the nurse and asked her if my mother was in a coma and she told me know. Shen said to me don't be surprised if your mother starts swelling up in different parts of her body day by day. So then my older brother walked in the room and he had told me that the doctor said that mom is lucky if she has two weeks left. I said no way this can't be happening. I was in shock. We then had her transferred to a cancer hospital and she only lasted four days there. We were visiting her on a Friday night and I noticed that her breathing wasn't right. She started skipping beats. The doctor listened to her breathe and she shook her head. I said what does this mean and she said that she was going to have to put her on the critical list. I freaked out. The next afternoon my father go the call that she was really having a hard time breathing. He said get to the hospital as soon as possible. I got there really quick and I just prayed that I wouldn't hear that rsttling in her chest like I heard when my husband's granfather passed away. Well as soon as I got to the door oif her room I started hearing that sound, it was horrible. I said beside her and kept telling her how much I loved her and that she was going to be alright. I held her hand for three hours and then I had to leave the room to use the bathroom. I was so afraid to leave, because I knew the minute I had left the room she was going to pass away and that is exactly what happened. I am so lost without her. She was my best friend we saw each other every day and did everything together. She passed away on 7/28/07, I can't believe that it is almost 1 year. I still keep saying that I can't believe that she is gone. She was only 70 yrs. old Her mother had passed away 6 months after her and she was 91 yrs. old. My mother did smoke, but she quit 10 yrs. before that. They say it doesn't matter when you quit the damage is there. My grandmother smoked along time and owned a bar and she never got cancer. I miss her so much, because she was my best friend. I still don't know what to do without her. I cry alot and I don't sleep at night. Anyway, thaks for listening to my story and hopefully you will right back. Take care. My thoughts are with you, your mother and your family. Lori