Hello Tori,
I am so sorry that you are not feeling well. Please post again when you get better. I look forward to continuing our correspondence.
Forums
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Aurora T - Name: Aurora Torres
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: July 2015
- Age at diagnosis: 60
Re: My story - diagnosed July 2015, still in pain
I have been where you are. I lost a vertebra to this wonderful malady. I lived with pain for about six months, trying every over the counter remedy including patches to the electronic stimulation. Also massage and acupuncture. But after lying in bed for a week because of the pain, I went to the emergency room, where they told me that my TV vertebra was gone.
After a failed try at kyphoplasty, my surgeon wound up replacing the vertebra with what he calls a beer can spacer. It is just metal wrapped around what used to be the vertebra. In addition, I have two rods and eight screws supporting my back. After two months of relearning to walk and four more relearning to run, I am relatively pain free.
It is a risky surgery, but it is better than living in constant unbearable pain. Ask the doctors about this for yourself.
After a failed try at kyphoplasty, my surgeon wound up replacing the vertebra with what he calls a beer can spacer. It is just metal wrapped around what used to be the vertebra. In addition, I have two rods and eight screws supporting my back. After two months of relearning to walk and four more relearning to run, I am relatively pain free.
It is a risky surgery, but it is better than living in constant unbearable pain. Ask the doctors about this for yourself.
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Jfosntampa - Name: John Foster
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 58
Re: My story - diagnosed July 2015, still in pain
Thank you for your input, John. I will try anything at this point to try to relieve my pain. I feel that the fentanyl is negatively affecting my nervous system. I just don't seem normal anymore. I am so lightheaded all the time and just out of it.
I am seeing the pain management anesthesiologist on Wednesday. I'll see what he recommends. I have had good and bad reviews about nerve blocks -- but I am willing to undergo it if it will work, at least for awhile. Your solution seems permanent, and that's what I am looking for. I will talk to my doctor about it.
Again, thank you. Will keep you posted.
I am seeing the pain management anesthesiologist on Wednesday. I'll see what he recommends. I have had good and bad reviews about nerve blocks -- but I am willing to undergo it if it will work, at least for awhile. Your solution seems permanent, and that's what I am looking for. I will talk to my doctor about it.
Again, thank you. Will keep you posted.
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Aurora T - Name: Aurora Torres
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: July 2015
- Age at diagnosis: 60
Re: My story - diagnosed July 2015, still in pain
Hi Aurora,
Hope you are going well with your brace.
Hope you are going well with your brace.
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Tori - Name: Victoria
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 56
Re: My story - diagnosed July 2015, still in pain
Hello Tori,
My brace will be ready on Monday. I will keep you posted. I am also going for a nerve block on Tuesday. I am trying everything because I am at the end of my rope with the pain. Wish me luck!
I am very depressed and don't know how in the world to get out of this mood.
Aurora
My brace will be ready on Monday. I will keep you posted. I am also going for a nerve block on Tuesday. I am trying everything because I am at the end of my rope with the pain. Wish me luck!
I am very depressed and don't know how in the world to get out of this mood.
Aurora
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Aurora T - Name: Aurora Torres
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: July 2015
- Age at diagnosis: 60
Re: My story - diagnosed July 2015, still in pain
Hi Aurora,
When I saw that you lived in New York it reminded me of when I was first diagnosed with myeloma.
I have travelled to the West Coast many times over the years (we have family in Anaheim) but I have always wanted to go to New York. My daughter worked for Goldman Sachs and was being transferred over there for two months in 2014, so it was planned that I would go over and stay with her.
I have always loved the theatre, fashion, and especially American people. We had arranged everything and I was so looking forward to the trip, but unfortunately it was about that time I was diagnosed and was just too ill to go. I was devastated not only to not be able to go, but realising I would never be able to travel overseas again.
My husband (John) and I had always travelled and actually were going to Bali for a work transfer for a year or two at the same time, so that was out the door also!
We had to come back to Australia (Gold Coast) as all my treatment had to be done here. I'm not sure how your medical system works in USA, but we have free medical and there was no way we could live in any other country and get all my treatment.
It really did change our life. John had to get a job on the Gold Coast, and all our dreams of living overseas had to be forgotten. I really empathize with your feelings about leaving work. You seem like you really loved your position and it does leave a huge hole in your life.
I don't know what the answer is to replace that void, I don't know that you ever can. I have tried a few things (volunteering); I was doing a day at a nursing home (facials, manicures, etc.) and I really enjoyed it, but unfortunately the pain was too much even though I maxed up on my medication and had to stop. There are many things that I would love to do, but the pain for me is so great it doesn't stop. From what you have written, it seems the same for you.
I am lucky that when I go to bed I am not in pain. Once I lay down I'm O.K. It's only when I'm up and moving that it starts to be a really painful . I take Kapanol (morphine) in quite high doses, Endone for breakthrough pain, and Neurontin for nerve pain. None of it ever really stops the pain but it does help.
I'm going to see a new doctor next week to see if there is anything else I can try, but I think I have run out of options.
I tried the nerve blocks with no success, sometimes the thought of living in constant pain really gets me down. I know how serious this disease is, but all I would like is to just have some quality of life!
I probably did sound like I was really busy, but that's not the case. This last week I had a viral infection and didn't get out of bed for 3 days. I find it really hard when I have a setback like that to get up and start going again. It's like going back to square one again!
Regarding antidepressants, I started taking them about a year ago -- mirtazapine (Remeron). I really don't think they helped me, so a couple of months ago I just stopped cold turkey. I know they help some people, but they just seemed to make me more disconnected, and lethargic.
I'm so sorry to hear about your panic attacks, I know what they are like! I don't think much about my illness during the day, but unfortunately for me I have what my doctor calls panic attacks in my sleep. There is no rhyme or reason to when they come. If I have a checkup coming they may happen a couple of times in a week. I will have terrible nightmares and wake up crying and very distressed. My anxiety comes through while I'm sleeping. Sometimes I'll take a sleeping tablet, but them I'm bombed out in the morning.
I've not heard you mention anything about a stem cell transplant? Is it something that you are considering?
I was on thalidomide for six months after my transplant, but currently on no medication for my myeloma. My protein levels have gone up by two (now 7 g/L, or 0.7 g/dL). If and when they go up by 5 g/L (0.5 g/dL), then they will look at starting treatment again. The next drug I would get is Revlimid (lenalidomide), another form of thalidomide. It is extremely expensive in Australia, and the only way you can get it subsidized is if your protein level goes up by 5 g/L in a very quick space of time. It makes me nervous when I think the illness really has to be on the move before I can start maintenance again.
Well, my latest venture is learning Tarot! Not something I ever thought I would do but the U3A group has a class and my friend wanted to go, so I started on Tuesday. There are 8 in the class, all at different levels, and I bought my first pack of cards today. Everyone including the teacher agrees it's more an interest (there are no hoodoo gooroos in the class) and can be a bit of fun. Learning the 78 card symbols will be a brain challenge if nothing else. Maybe I can don a gypsy scarf and give readings at the markets? I always said if only I could find a job where I could be my own boss and sit down all day I'd be fine but I don't think that was the mid life career path I was thinking of going down!
Hope you are feeling a bit better in yourself. I think if you can try and keep the mental negative out of your life as much as possible, it really does help the psychical pain (I hate it when they say just stay positive; easy for them to say) but even if laughing with my family, friends and even myself about my stupid Tarot classes, it's better than the option. As Charlie Chaplin said, "Laugh and the world laughs with you, cry and you cry alone."
My apologies if my posting has been too long, but I would love to hear from you and see how you're doing with everything.
Fond regards,
Victoria
When I saw that you lived in New York it reminded me of when I was first diagnosed with myeloma.
I have travelled to the West Coast many times over the years (we have family in Anaheim) but I have always wanted to go to New York. My daughter worked for Goldman Sachs and was being transferred over there for two months in 2014, so it was planned that I would go over and stay with her.
I have always loved the theatre, fashion, and especially American people. We had arranged everything and I was so looking forward to the trip, but unfortunately it was about that time I was diagnosed and was just too ill to go. I was devastated not only to not be able to go, but realising I would never be able to travel overseas again.
My husband (John) and I had always travelled and actually were going to Bali for a work transfer for a year or two at the same time, so that was out the door also!
We had to come back to Australia (Gold Coast) as all my treatment had to be done here. I'm not sure how your medical system works in USA, but we have free medical and there was no way we could live in any other country and get all my treatment.
It really did change our life. John had to get a job on the Gold Coast, and all our dreams of living overseas had to be forgotten. I really empathize with your feelings about leaving work. You seem like you really loved your position and it does leave a huge hole in your life.
I don't know what the answer is to replace that void, I don't know that you ever can. I have tried a few things (volunteering); I was doing a day at a nursing home (facials, manicures, etc.) and I really enjoyed it, but unfortunately the pain was too much even though I maxed up on my medication and had to stop. There are many things that I would love to do, but the pain for me is so great it doesn't stop. From what you have written, it seems the same for you.
I am lucky that when I go to bed I am not in pain. Once I lay down I'm O.K. It's only when I'm up and moving that it starts to be a really painful . I take Kapanol (morphine) in quite high doses, Endone for breakthrough pain, and Neurontin for nerve pain. None of it ever really stops the pain but it does help.
I'm going to see a new doctor next week to see if there is anything else I can try, but I think I have run out of options.
I tried the nerve blocks with no success, sometimes the thought of living in constant pain really gets me down. I know how serious this disease is, but all I would like is to just have some quality of life!
I probably did sound like I was really busy, but that's not the case. This last week I had a viral infection and didn't get out of bed for 3 days. I find it really hard when I have a setback like that to get up and start going again. It's like going back to square one again!
Regarding antidepressants, I started taking them about a year ago -- mirtazapine (Remeron). I really don't think they helped me, so a couple of months ago I just stopped cold turkey. I know they help some people, but they just seemed to make me more disconnected, and lethargic.
I'm so sorry to hear about your panic attacks, I know what they are like! I don't think much about my illness during the day, but unfortunately for me I have what my doctor calls panic attacks in my sleep. There is no rhyme or reason to when they come. If I have a checkup coming they may happen a couple of times in a week. I will have terrible nightmares and wake up crying and very distressed. My anxiety comes through while I'm sleeping. Sometimes I'll take a sleeping tablet, but them I'm bombed out in the morning.
I've not heard you mention anything about a stem cell transplant? Is it something that you are considering?
I was on thalidomide for six months after my transplant, but currently on no medication for my myeloma. My protein levels have gone up by two (now 7 g/L, or 0.7 g/dL). If and when they go up by 5 g/L (0.5 g/dL), then they will look at starting treatment again. The next drug I would get is Revlimid (lenalidomide), another form of thalidomide. It is extremely expensive in Australia, and the only way you can get it subsidized is if your protein level goes up by 5 g/L in a very quick space of time. It makes me nervous when I think the illness really has to be on the move before I can start maintenance again.
Well, my latest venture is learning Tarot! Not something I ever thought I would do but the U3A group has a class and my friend wanted to go, so I started on Tuesday. There are 8 in the class, all at different levels, and I bought my first pack of cards today. Everyone including the teacher agrees it's more an interest (there are no hoodoo gooroos in the class) and can be a bit of fun. Learning the 78 card symbols will be a brain challenge if nothing else. Maybe I can don a gypsy scarf and give readings at the markets? I always said if only I could find a job where I could be my own boss and sit down all day I'd be fine but I don't think that was the mid life career path I was thinking of going down!
Hope you are feeling a bit better in yourself. I think if you can try and keep the mental negative out of your life as much as possible, it really does help the psychical pain (I hate it when they say just stay positive; easy for them to say) but even if laughing with my family, friends and even myself about my stupid Tarot classes, it's better than the option. As Charlie Chaplin said, "Laugh and the world laughs with you, cry and you cry alone."
My apologies if my posting has been too long, but I would love to hear from you and see how you're doing with everything.
Fond regards,
Victoria
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Tori - Name: Victoria
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 56
Re: My story - diagnosed July 2015, still in pain
Hello Tori,
I love reading your posts, so please keep them coming. I have found a friend in you.
With regard to medical benefits, I am currently on COBRA. It is an extension of benefits for 18 months after you are no longer employed. It terminates next April and I am quite nervous about what I am going to do after that. I have to consult with the hospital to see if they can guide me to what plan I can get into. I will have to pay for it and I know it will be very expensive. You having free medical is the greatest gift any country can give it's residents.
My pain is constant -- even when I lie down. Sometimes I don't sleep. If it's close to the time to change my fentanyl patch, it is almost impossible to sleep at all. I am not on any other pain medications because they don't work for me. My system does not take well to opioid drugs. I have difficulty with the fentanyl also, but I have to be on something. Very difficult.
We are pretty much in the same boat, you and I. But I have to admire you for at least getting out there and doing something. I'm still trying to figure out what to do with my time so that I am not constantly wallowing in my pain.
I underwent a stem cell transplant last December. It put me into remission, which is great, but I have a cloud over me due to the pain. I will see how the brace works and the injection. One day at a time. I don't want to keep complaining too much to my hubby. I think he is almost at the breaking point. He can't help me in any way and I know that is torturous for him.
I pray that some relief can come your way soon. You have a lovely smile and I think about you a lot. Wish we weren't a world away.
I love reading your posts, so please keep them coming. I have found a friend in you.
With regard to medical benefits, I am currently on COBRA. It is an extension of benefits for 18 months after you are no longer employed. It terminates next April and I am quite nervous about what I am going to do after that. I have to consult with the hospital to see if they can guide me to what plan I can get into. I will have to pay for it and I know it will be very expensive. You having free medical is the greatest gift any country can give it's residents.
My pain is constant -- even when I lie down. Sometimes I don't sleep. If it's close to the time to change my fentanyl patch, it is almost impossible to sleep at all. I am not on any other pain medications because they don't work for me. My system does not take well to opioid drugs. I have difficulty with the fentanyl also, but I have to be on something. Very difficult.
We are pretty much in the same boat, you and I. But I have to admire you for at least getting out there and doing something. I'm still trying to figure out what to do with my time so that I am not constantly wallowing in my pain.
I underwent a stem cell transplant last December. It put me into remission, which is great, but I have a cloud over me due to the pain. I will see how the brace works and the injection. One day at a time. I don't want to keep complaining too much to my hubby. I think he is almost at the breaking point. He can't help me in any way and I know that is torturous for him.
I pray that some relief can come your way soon. You have a lovely smile and I think about you a lot. Wish we weren't a world away.
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Aurora T - Name: Aurora Torres
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: July 2015
- Age at diagnosis: 60
Re: My story - diagnosed July 2015, still in pain
Hi Aurora,
That must be a worry with your medical benefits.
What does normally happen when benefits run out for patients? If you needed a stem cell transplant and were still not covered, how do people pay? I would imagine the stress of how to cover the costs would be incredible.
That was the reason we returned from Thailand. Yes, if you are Thai, there is no problem. All employers must pay for medical benefits for there staff (compulsory) and it is extremely cheap.
But if you are a Farang (westerner) that's another story. Yes, there is some cheap packages for cosmetic tourism etc,, but if you find yourself with an illness or needing a medical procedure, it is very expensive. The costs are only less because the surgeons and specialists are cheaper. You can consult with a gynaecologist in one of the major hospitals for $AUS 50, but if you want a hospital bed your looking at around $AUS 1000 per night, pretty much same as Australia. You only save on the special or surgeon fees.
How are things going for you?
I'm still marching on here trying to keep motivated. Some days are better than others. Will be seeing my oncologist end of the week for results, so I'm getting a bit nervous again!
Hope to get an update from you soon
That must be a worry with your medical benefits.
What does normally happen when benefits run out for patients? If you needed a stem cell transplant and were still not covered, how do people pay? I would imagine the stress of how to cover the costs would be incredible.
That was the reason we returned from Thailand. Yes, if you are Thai, there is no problem. All employers must pay for medical benefits for there staff (compulsory) and it is extremely cheap.
But if you are a Farang (westerner) that's another story. Yes, there is some cheap packages for cosmetic tourism etc,, but if you find yourself with an illness or needing a medical procedure, it is very expensive. The costs are only less because the surgeons and specialists are cheaper. You can consult with a gynaecologist in one of the major hospitals for $AUS 50, but if you want a hospital bed your looking at around $AUS 1000 per night, pretty much same as Australia. You only save on the special or surgeon fees.
How are things going for you?
I'm still marching on here trying to keep motivated. Some days are better than others. Will be seeing my oncologist end of the week for results, so I'm getting a bit nervous again!
Hope to get an update from you soon
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Tori - Name: Victoria
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 56
Re: My story - diagnosed July 2015, still in pain
Hello Tori,
Nice hearing from you again.
When my medical benefits run out, I have to apply for a private insurance. I will not be eligible for social security Medicare until I have collected social security disability for two years and that won't happen until February 2018. It makes for a very stressful situation, but I have to face the music. Private insurance will cost me a lot of money; hopefully I will be able to pay for it since I absolutely must have benefits. I have to include my husband too. He won't be eligible for Medicare until September 2017.
I got the brace last Monday. It does help a lot with my posture and I am able to at least sit for longer periods of time if I have to. It came in two pieces; one for my upper back and shoulders, and the other for my middle area. I keep them on all my waking hours even though it makes me a bit stiff at times.
I got the nerve block on Tuesday. It was a bit painful since they had to make three attempts before the medication went in. The spacing between my vertebra is very small, so they had to hunt for the right area. The doctors said that if it worked, it would take from 5-7 days. This is day 5 and nothing has happened yet. Don't know if it will kick in. If it doesn't, then I have to go another route.
I wish you all the luck in the world with your next appointment. Please keep me posted.
Thank you so much for inquiring and continuing to write to me. As I have said to you before, you are an inspiration.
Love,
Aurora
Nice hearing from you again.
When my medical benefits run out, I have to apply for a private insurance. I will not be eligible for social security Medicare until I have collected social security disability for two years and that won't happen until February 2018. It makes for a very stressful situation, but I have to face the music. Private insurance will cost me a lot of money; hopefully I will be able to pay for it since I absolutely must have benefits. I have to include my husband too. He won't be eligible for Medicare until September 2017.
I got the brace last Monday. It does help a lot with my posture and I am able to at least sit for longer periods of time if I have to. It came in two pieces; one for my upper back and shoulders, and the other for my middle area. I keep them on all my waking hours even though it makes me a bit stiff at times.
I got the nerve block on Tuesday. It was a bit painful since they had to make three attempts before the medication went in. The spacing between my vertebra is very small, so they had to hunt for the right area. The doctors said that if it worked, it would take from 5-7 days. This is day 5 and nothing has happened yet. Don't know if it will kick in. If it doesn't, then I have to go another route.
I wish you all the luck in the world with your next appointment. Please keep me posted.
Thank you so much for inquiring and continuing to write to me. As I have said to you before, you are an inspiration.
Love,
Aurora
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Aurora T - Name: Aurora Torres
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: July 2015
- Age at diagnosis: 60
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