Hi there,
I too did not quite know how to respond to your lengthy introductory post as it delivered more of a personal journal entry feel that perhaps was catharis for you but thanks for sharing. You say you won't give up and that is good to hear. Good luck to you.
Forums
Re: This is me.
December 5th
Finished my trip to Dallas for this month. The infusions are making me nauseas (spelling sry) and I slept for 4 hours afterwards. Doing ok though. My daughter got to be with me this time which was really nice. Even took pictures. Evidence I guess. I'm not really 100% sure why I had her take pictures. Like this thread, documenting my journey I guess. There is this girl. She's about to marry into my family. She doesn't like me much. Not sure why. She doesn't even know me. She tells the family I'm a liar and a fake. I'm faking having cancer to get attention and make lots of money. I don't know where people get these ideas. I really feel sorry for her. Her life must be very miserable to so freely spread such misery around her. I'm very sorry that her life has held so much pain that she isn't able to see beauty anymore. Or recognize goodness when she sees it. My daughter, who has been with me every step of the way with this disease, got upset. I told her, people like this, they need patience and understanding and compassion more than a lecture or criticism. If they can't see the good in those around them, then we have to just keep showing them until the begin to see and feel. A very good man helped me once. My husband. He showed me that goodness does exist and beauty is all around us if we just allow ourselves to see it and feel it. He's gone now. He died. But what he taught me didn't. Anyway, I am still collecting new diagnosis. When I bend, stretch or even breathe, my ribs hurt. Doc says it's called costochondritis. Everything I find says it's a temporary condition, but this is the third time it's flared up in 2 months. It's very painful. i thought I had broken my ribs. I didn't. It's the cartalidge all around the ribs. Still running my bank account in the hole every month just trying to get back and forth to treatments. But I'll be ok. Not like it's gonna kill me right? I have about 4 hours before I go see my new neurologist. I guess I now have two teams of docs. One in Dallas led by a specialist and one here at home led by my cardiologist. I have an oncologist here at home going to join the team too soon. And I still have to find a dental surgeon. Oh, I have fisure tongue too. Not sure what that's from though. Feeling a bit melencolly today. Been up all night with bad pain in my back and legs. I still feel like my own body is a traitor, but not giving up yet. It's a race to see which organ will fail me first. Got my Christmas tree put up. Can't find any decorations so I made some. Colored paper pinwheels and cut out snow flakes. Then I put candy canes all over it. It's kinda nice. First time I've had one since my hubby died. I'll write more later about how it goes with the neurologist. Maybe he can help me walk again.
Finished my trip to Dallas for this month. The infusions are making me nauseas (spelling sry) and I slept for 4 hours afterwards. Doing ok though. My daughter got to be with me this time which was really nice. Even took pictures. Evidence I guess. I'm not really 100% sure why I had her take pictures. Like this thread, documenting my journey I guess. There is this girl. She's about to marry into my family. She doesn't like me much. Not sure why. She doesn't even know me. She tells the family I'm a liar and a fake. I'm faking having cancer to get attention and make lots of money. I don't know where people get these ideas. I really feel sorry for her. Her life must be very miserable to so freely spread such misery around her. I'm very sorry that her life has held so much pain that she isn't able to see beauty anymore. Or recognize goodness when she sees it. My daughter, who has been with me every step of the way with this disease, got upset. I told her, people like this, they need patience and understanding and compassion more than a lecture or criticism. If they can't see the good in those around them, then we have to just keep showing them until the begin to see and feel. A very good man helped me once. My husband. He showed me that goodness does exist and beauty is all around us if we just allow ourselves to see it and feel it. He's gone now. He died. But what he taught me didn't. Anyway, I am still collecting new diagnosis. When I bend, stretch or even breathe, my ribs hurt. Doc says it's called costochondritis. Everything I find says it's a temporary condition, but this is the third time it's flared up in 2 months. It's very painful. i thought I had broken my ribs. I didn't. It's the cartalidge all around the ribs. Still running my bank account in the hole every month just trying to get back and forth to treatments. But I'll be ok. Not like it's gonna kill me right? I have about 4 hours before I go see my new neurologist. I guess I now have two teams of docs. One in Dallas led by a specialist and one here at home led by my cardiologist. I have an oncologist here at home going to join the team too soon. And I still have to find a dental surgeon. Oh, I have fisure tongue too. Not sure what that's from though. Feeling a bit melencolly today. Been up all night with bad pain in my back and legs. I still feel like my own body is a traitor, but not giving up yet. It's a race to see which organ will fail me first. Got my Christmas tree put up. Can't find any decorations so I made some. Colored paper pinwheels and cut out snow flakes. Then I put candy canes all over it. It's kinda nice. First time I've had one since my hubby died. I'll write more later about how it goes with the neurologist. Maybe he can help me walk again.
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Obayan
Re: This is me.
"Anyway, I am still collecting new diagnosis. When I bend, stretch or even breathe, my ribs hurt. Doc says it's called costochondritis. Everything I find says it's a temporary condition, but this is the third time it's flared up in 2 months. It's very painful. i thought I had broken my ribs. I didn't. It's the cartalidge all around the ribs"
Hi Sharon,
Prior to being diagnosed with a plasmacytoma in the cervical (neck area) I self diagnosed myself with "intercostal neuralgia and costochondritis", not thinking that I had it but the SYMPTOMS matched. I also felt like I couldn't breathe without my frontal ribs hurting and I had flare ups, too. Anyway, I had a compressed spinal cord, all related. Once I had a corpectomy, I was like new! Yours of course might be completely different but it has some familiar rings to it.
Hi Sharon,
Prior to being diagnosed with a plasmacytoma in the cervical (neck area) I self diagnosed myself with "intercostal neuralgia and costochondritis", not thinking that I had it but the SYMPTOMS matched. I also felt like I couldn't breathe without my frontal ribs hurting and I had flare ups, too. Anyway, I had a compressed spinal cord, all related. Once I had a corpectomy, I was like new! Yours of course might be completely different but it has some familiar rings to it.
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Anonymous
Re: This is me.
Started cardiac rehab the other day. It was rough. Especially considering how much I can't do with my heart and the condrochonditis and the nerve damage in my spine. Mostly it's just supervised stretching. Even that was rough though. I haven't decided yet if I'm going to have the stem cell transplant or not. I have a little time to decide yet. Just not sure if my life is worth all the hell a transplant will involve. Doc gave me some anti-depressants. Hope they kick in sometime soon.
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Obayan
Re: This is me.
Hi Obayan, It's good to know that you are getting good medical care now. I hope that the treatments you are taking work really well for you too!
On the topic of stem cell transplants, there are many patients who opt to go on differing treatment protocols than that. It is a big decision, and not for everyone either. If you are experiencing heart problems, it might be not suited for you either. I had to go through testing on my heart before being approved for a transplant. There is a lot of information on the Beacon, and also many patients who are willing to share their experiences too. Best wishes with everything, and have a nice holiday season!
On the topic of stem cell transplants, there are many patients who opt to go on differing treatment protocols than that. It is a big decision, and not for everyone either. If you are experiencing heart problems, it might be not suited for you either. I had to go through testing on my heart before being approved for a transplant. There is a lot of information on the Beacon, and also many patients who are willing to share their experiences too. Best wishes with everything, and have a nice holiday season!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: This is me.
Hi there. I read your posts and hope you are doing better. Sometimes things just feel like they are spiralling and so out of control. And it's so hard when there is so much happening at the same time. Please keep checking it.
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Terrilynnn - Name: Terrilynn
- Who do you know with myeloma?: Boyfriend
- When were you/they diagnosed?: May 18 2013
- Age at diagnosis: 46
Re: This is me.
Obayan, you are tugging at my own heart. I also have had parental abuse, but not nearly the long list of other negative events you have endured. I also have claustrophobia, but it occurs when I am in a small, closed room, like when visiting with my doctor. I can do the MRI just fine. I also have trouble with my teeth, lots of root canals and some breakage. I am familiar with Xanax, what a God send!
My biggest obstacle has been that my oncologist has a strong physical resemblance to my father. When you put that together with an office visit, my heart starts to race when the door closes. It has taken me a regular dose of therapy and 2-3 years to get past this part. I have an oncologist with good experience with myeloma. He has helped me a great deal and manages my anxiety quiet well.
I also had a fair amount of bone pain, as I was diagnosed at Stage 3 in June 2010. I had a hole in my sternum, dislocated ribs, a large tumor above my tailbone, and a fracture of a vertebra. I also had a lot of discomfort in my pelvic bones and my femors. I want you to know that all of my bone pain went away before I finished my initial chemo treatments. The tumor has disappeared, my sternum has filled in, and my ribs stay put.
I have been lucky in that my body tolerates all the chemo and the Zometa treatments very well. You may not be lucky here. But please have faith in God and your doctors, because time has taught me that the doctors always have a Plan B. I went through the auto transplant you will read about, but my cells were drug resistant so they lived through the process. I began to have anxiety issues again. But my transplant doctor explained that 30 to 40 percent of myeloma patients have little or no response to any drug treatment due to drug resistance and that "this is the challenge of myeloma."
I am doing quite well now. I still remain in remission after 3+ years and take a maintenance chemo every day, a pill called Revlimid. My last biopsy was 3 years ago, a bit of a relief. I am not perfect, but I am comfortable. I am able to work, and have been working full-time since 2+ months after the transplant. I just feel so much better than before, and it all makes sense to me now. I saw stars all the time. I had endurance difficulties but had always been active. The problems with the teeth. I had been tripping and falling, always from my right leg not acting like I expected (the tumor pressed on the nerve). All these things have gone away completely. Yes, I have minor difficulties with drug issues, but everything else has receded. And I also have really nice blood count numbers now.
This has given me strength to decide to live the rest of my life without the drama and pain which comes with my parents. Every year, I would take a little step away. My husband and my son both asked me to do this. They love me, and they are right. They said in their opinion I was a much happier person when I did not have contact with my parents. They want me to be happy and to be strong and enjoy life.
Finally, my doctor has always told me myeloma may be incurable but it is a treatable disease. The recent drugs are not harsh treatments. You doctor has a Plan B or a Plan C, etc. to treat you and keep you comfortable. He will watch for side effects, and you have experience with past cardiac moments and you will know if you encounter something negative. Keep up with what you are doing. Keep working with a myeloma specialist or an oncologist who has experience with treating myeloma (a lot of experience, not 10-20 patients). The transplant nurses also told me to also visualize myself in the future, doing things I wanted to do as a recovered patient.
Get your rest! I would sometimes try to do too much, and I would get bit in the butt later. Keep an eye out for germs, since you are around your grandbabies. Your immune system will not handle germs like it used to while in chemo. Just do whatever you have to and get through the treatment process. It is worth it! At least it has been for me. I had about a whole year of difficulties and another year of recovering strength. The research is delivering a lot of options and opportunities to us in the very recent past. Our journey will not be the same as patients from 10 years ago.
I made it out of the maze, and so can you. You have a lot of strength. We both need to let people do things for us, and we need to ask for help. Yes, I know that is very difficult. It something for us both to work on. I wish for you what I have received for myself -- time in the future to enjoy your family and your life without so much negative baloney!
My biggest obstacle has been that my oncologist has a strong physical resemblance to my father. When you put that together with an office visit, my heart starts to race when the door closes. It has taken me a regular dose of therapy and 2-3 years to get past this part. I have an oncologist with good experience with myeloma. He has helped me a great deal and manages my anxiety quiet well.
I also had a fair amount of bone pain, as I was diagnosed at Stage 3 in June 2010. I had a hole in my sternum, dislocated ribs, a large tumor above my tailbone, and a fracture of a vertebra. I also had a lot of discomfort in my pelvic bones and my femors. I want you to know that all of my bone pain went away before I finished my initial chemo treatments. The tumor has disappeared, my sternum has filled in, and my ribs stay put.
I have been lucky in that my body tolerates all the chemo and the Zometa treatments very well. You may not be lucky here. But please have faith in God and your doctors, because time has taught me that the doctors always have a Plan B. I went through the auto transplant you will read about, but my cells were drug resistant so they lived through the process. I began to have anxiety issues again. But my transplant doctor explained that 30 to 40 percent of myeloma patients have little or no response to any drug treatment due to drug resistance and that "this is the challenge of myeloma."
I am doing quite well now. I still remain in remission after 3+ years and take a maintenance chemo every day, a pill called Revlimid. My last biopsy was 3 years ago, a bit of a relief. I am not perfect, but I am comfortable. I am able to work, and have been working full-time since 2+ months after the transplant. I just feel so much better than before, and it all makes sense to me now. I saw stars all the time. I had endurance difficulties but had always been active. The problems with the teeth. I had been tripping and falling, always from my right leg not acting like I expected (the tumor pressed on the nerve). All these things have gone away completely. Yes, I have minor difficulties with drug issues, but everything else has receded. And I also have really nice blood count numbers now.
This has given me strength to decide to live the rest of my life without the drama and pain which comes with my parents. Every year, I would take a little step away. My husband and my son both asked me to do this. They love me, and they are right. They said in their opinion I was a much happier person when I did not have contact with my parents. They want me to be happy and to be strong and enjoy life.
Finally, my doctor has always told me myeloma may be incurable but it is a treatable disease. The recent drugs are not harsh treatments. You doctor has a Plan B or a Plan C, etc. to treat you and keep you comfortable. He will watch for side effects, and you have experience with past cardiac moments and you will know if you encounter something negative. Keep up with what you are doing. Keep working with a myeloma specialist or an oncologist who has experience with treating myeloma (a lot of experience, not 10-20 patients). The transplant nurses also told me to also visualize myself in the future, doing things I wanted to do as a recovered patient.
Get your rest! I would sometimes try to do too much, and I would get bit in the butt later. Keep an eye out for germs, since you are around your grandbabies. Your immune system will not handle germs like it used to while in chemo. Just do whatever you have to and get through the treatment process. It is worth it! At least it has been for me. I had about a whole year of difficulties and another year of recovering strength. The research is delivering a lot of options and opportunities to us in the very recent past. Our journey will not be the same as patients from 10 years ago.
I made it out of the maze, and so can you. You have a lot of strength. We both need to let people do things for us, and we need to ask for help. Yes, I know that is very difficult. It something for us both to work on. I wish for you what I have received for myself -- time in the future to enjoy your family and your life without so much negative baloney!
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Marcia - Name: Marcia K
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: July 2010
- Age at diagnosis: 55
Re: This is me.
Dear Obeyan,
I am sorry to hear about your diagnosis and how hard life has been. I guess we all handle these things in different ways. Please try and keep your chin up and keep going to your support group and you may want to consider some counseling to help you through this hard time. You don't need to suffer in pain, fill those meds, and get refills. Maybe there is something else out there to help manage the pain also, I hear acupuncture helps some people, just keep an open mind and don't give up. This is your life and your time to take care of you. God Bless and take care. People do care, keep up the fight.
I am sorry to hear about your diagnosis and how hard life has been. I guess we all handle these things in different ways. Please try and keep your chin up and keep going to your support group and you may want to consider some counseling to help you through this hard time. You don't need to suffer in pain, fill those meds, and get refills. Maybe there is something else out there to help manage the pain also, I hear acupuncture helps some people, just keep an open mind and don't give up. This is your life and your time to take care of you. God Bless and take care. People do care, keep up the fight.
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kjpoppit - Name: Kim Nelson
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept. 19th, 2013
- Age at diagnosis: 47
Re: This is me.
Hi,
I also have myeloma and suffer with very bad back pain. I had 4 fractures of the spine, my spine was repaired, but my back hurts so bad I can't bend to wash my face. I have a hard time walking with a cane, so I use a walker.
They can't find what's causing my back pain. I am on hydromorphone. I take 5 8 mg a day. I also wish I could get my back pain gone so I can have some quality of life.
I wish you all the best health and life. Truly best wishes, Joe.
I also have myeloma and suffer with very bad back pain. I had 4 fractures of the spine, my spine was repaired, but my back hurts so bad I can't bend to wash my face. I have a hard time walking with a cane, so I use a walker.
They can't find what's causing my back pain. I am on hydromorphone. I take 5 8 mg a day. I also wish I could get my back pain gone so I can have some quality of life.
I wish you all the best health and life. Truly best wishes, Joe.
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Joe
Re: This is me.
Dear Sharon,
I have read your posts and have bawled my eyes out for you. I wouldn't have left you a message but I read your post that said 200 viewed, only 1 comment. Maybe we just don't know what to say. "Take care," "God bless," and "Hang in there" seem too cliche.
You're not the first person to have expressed feeling about friends disappearing in time of need. This is a strange phenomenon, but it might be about fear: not knowing what to say to you or how to act or what to do. No excuse, I know, and I'm not defending them.
Your posts are not in vain, at least one person (me) has learned something about how to be a better friend. I wish you all the best in your journey. I hope that the new meds will allow you to live many enjoyable years.
I have read your posts and have bawled my eyes out for you. I wouldn't have left you a message but I read your post that said 200 viewed, only 1 comment. Maybe we just don't know what to say. "Take care," "God bless," and "Hang in there" seem too cliche.
You're not the first person to have expressed feeling about friends disappearing in time of need. This is a strange phenomenon, but it might be about fear: not knowing what to say to you or how to act or what to do. No excuse, I know, and I'm not defending them.
Your posts are not in vain, at least one person (me) has learned something about how to be a better friend. I wish you all the best in your journey. I hope that the new meds will allow you to live many enjoyable years.
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Boogaloo
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