Hi I was diagnosed with Mutiple Myeloma in Nov 2012. At first my back was giving me some pain. I thought I had injured it in some way but couldn't for the life of me know what I had done to make it hurt so bad.
I didn't have insurance so I went to our urgent care facility when the pain became unbearable. They felt my back said I must have injured it in some way gave me some pain meds and steroids and told me to follow up with my family doc. At this time I didn't have a family doc but went home and took the meds they gave me. I thought well all will be fine no problem I'll take the meds and the pain will subside and I can then go on with my life. I took off work so I could actually rest while getting better. After the 10 days of meds my back was not only not better but it was worse. I then went back to the urgent care....they now take an xray of my back. They tell me I have some problems with my spine and that what they see is fractures/breaks in my L6 and 7. I need to go to a spine specialists. They give me more meds for pain and I have them make an appointment for me for the following Monday. It's only 6 days and I can make it till then. Little did I know that I wouldn't make it till then. Apparently my blood levels went all out of wack...protein was high and calcium was high. I was not comprehending much because of the high levels in my blood. I was wacky to say the least.
On Sunday Nov 11th my partner woke me up to tell me he was going to work...I said ok see you when you get back home...he thought I was ok and since I had an appointment the next day he didn't think much of it. After this everything goes pretty blank for me. I don't remember much because the levels in my blood have really taken a toll on my brain. My daughter comes home from work and checks on me and she said that I was talking crazy. She is 20 and I am her rock...she has never seen me in any way but in control. She knows something is up and not right and calls my brother to come to the house. When he gets there he calls my partner in life and tells him that something is really wrong and he is taking me to the emergency room. This is when I lose everything except the hallucenations I was having which by the way seemed to be so real...and even to this day I can remember each and every one of them like they happened to me.
In the emergency room they took a blood sample but I have been told that my blood was like Karo surup...that the levels I told earlier had made it this way. The doctor told my family that he thought I had multiple myeloma but they would have to do a biopsy first to be completely sure. Still at this time I have no memory of this happening...I've been at the hospital now for 2 days. I am half out of my mind pulling out the cathater, and the IV's as soon as they put them in. I have to have someone in my room 24 hours a day to watch me so I don't hurt myself. I am having problems breathing at this time...I can remember telling my partner that I couldn't breath and that I just couldn't go on anymore...I think at this time I was actually dying. The hallucenations are becoming more real to me at this time and I'm telling people about them. I don't realize this because to tell you the truth I don't remember any of it. The biopsy comes back and sure enough the doc is right. They start treatment on me at this time (3rd Day) to bring my blood levels down...this takes another 2 days to complete where I'm not crazy as a loon. I still have to have someone with me for the 24 hour watch until I can actually communicate. This takes another 4 days. My entire family was called and came from other states to be with me. It was like a dream when I woke up and see all my friends and family there with me. I still have no memory of any of this and am completly surprized at what they are all telling me. I'm still a bit fuzzy and I can't do much or even talk much. Scared yes I was...and still at this time I didn't even know what was wrong with me.
The doctor came into my room and explained what had happened to me and of course what was wrong with me. All I could do was stare at him in disbelief. I never get sick...I'm so healthy. I take care of everyone else what am I going to do? Listening to him has my head spinning. I'm wondering if this is real or am I dreaming? It turns out this is not a dream it is real.
I was released from the hospital 11 days after an sent home to recouperate. I could not do anything for myself at this time. I had to have my family and friends take care of me. I couldn't go to the bathroom without someone helping me get out of bed. I couldn't walk without someone helping me. So of course I couldn't cook or take care of myself. For the next 3 weeks I had someone with me at all times to help me. Friends and family took off work to take care of me. I don't know what I would have done without them. They became my rock...never in my life can I remember needing any help at all...I was always so independent. This was very much an eye opener for me.
So now 2 months later I'm going on my 3rd cycle of Velcade...my doctor is talking about the stem cell trans with me. I don't know much about it and have been trying to find information out there so I can figure out if I would want to do this at this time or maybe wait for a bit.
I still have no insurance and I am currently trying to get total disability with Social Security. This will then set me up with medicade since I'm not 65. It's all a waiting game. And so I wait.
If there is anyone out there that can give me some info on what I need to do please please send it to me. The Velcade is working well and all my levels are at what they call normal? And normal is good.
Forums
5 posts
• Page 1 of 1
-
Cher - Name: Cheri Fitzgerald
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Nov 2012
- Age at diagnosis: 54
Re: My Name is Cheri
Hi Cheri,
Wow lady! You've had quite a ride so far...this all sound so familiar. The out of the blue, go to the ER and days and days of trying to get stabilized and all WITHOUT insurance. That's what happened to my husband back in Nov., but the dr in the hospital only gave him dex as a treatment.
I don't know if it was because he didn't have insurance or if it was because his kidney function was so low. Either way, two months later he still is waiting to start Velcade and Revlimid.
I was able to get him insured thru PCIP. I don't know if you've applied, but you will most certainly be accepted!
Keep us posted and good luck!
Lisa
Wow lady! You've had quite a ride so far...this all sound so familiar. The out of the blue, go to the ER and days and days of trying to get stabilized and all WITHOUT insurance. That's what happened to my husband back in Nov., but the dr in the hospital only gave him dex as a treatment.
I don't know if it was because he didn't have insurance or if it was because his kidney function was so low. Either way, two months later he still is waiting to start Velcade and Revlimid.
I was able to get him insured thru PCIP. I don't know if you've applied, but you will most certainly be accepted!
Keep us posted and good luck!
Lisa
-
twizzler - Name: Lisa
- Who do you know with myeloma?: my husband
- When were you/they diagnosed?: Nov 2012
- Age at diagnosis: 41
Re: My Name is Cheri
Hi Cheri,
I've been meaning to reply to your posting ever since I first saw it, but just never got around to it. Sorry for the delay.
As twizzler said, that is some ordeal that you went through. Wow! I'm glad you had all your friends and family to look out for you, and, even more so, I'm glad you're responding to your treatment.
To really understand the disease that you now have and how it is treated, there is no way around the fact that you're going to have to read a lot and, if possible, talk to a lot of people.
There's a lot to learn, but just take it one step at a time. Fortunately, with the treatments that are around these days for myeloma, you should have plenty of time to do the learning you will want to do.
If you have questions about what you're going through and your treatment options, the best thing to do here in the forum is to post specific questions. That will get you the most help. General questions are just a lot harder to answer.
Also, don't forget that there's a search feature for both the forum and a separate search box at the top for the rest of the site (news articles and columns). Both are useful for digging around for information on specific topics.
Best of luck to you. It sounds like you're making great progress.
I've been meaning to reply to your posting ever since I first saw it, but just never got around to it. Sorry for the delay.
As twizzler said, that is some ordeal that you went through. Wow! I'm glad you had all your friends and family to look out for you, and, even more so, I'm glad you're responding to your treatment.
To really understand the disease that you now have and how it is treated, there is no way around the fact that you're going to have to read a lot and, if possible, talk to a lot of people.
There's a lot to learn, but just take it one step at a time. Fortunately, with the treatments that are around these days for myeloma, you should have plenty of time to do the learning you will want to do.
If you have questions about what you're going through and your treatment options, the best thing to do here in the forum is to post specific questions. That will get you the most help. General questions are just a lot harder to answer.
Also, don't forget that there's a search feature for both the forum and a separate search box at the top for the rest of the site (news articles and columns). Both are useful for digging around for information on specific topics.
Best of luck to you. It sounds like you're making great progress.
Re: My Name is Cheri
twizzler wrote:
> Hi Cheri,
> Wow lady! You've had quite a ride so far...this all sound so familiar.
> The out of the blue, go to the ER and days and days of trying to get
> stabilized and all WITHOUT insurance. That's what happened to my husband
> back in Nov., but the dr in the hospital only gave him dex as a treatment.
>
> I don't know if it was because he didn't have insurance or if it was
> because his kidney function was so low. Either way, two months later he
> still is waiting to start Velcade and Revlimid.
> I was able to get him insured thru PCIP. I don't know if you've applied,
> but you will most certainly be accepted!
> Keep us posted and good luck!
>
> Lisa
Lisa,
Thank you for your reply. I haven't applied for PCIP as of yet...I am waiting on the disability to come through. My doctor does not want to release me to work since my job before all this was waitressing...I don't think I could really do the job efficently at this time and neither does he. I'm sorry that you and your husband had to go thru anything close to what I have been through with this. It has been mind blowing to say the least. Hopefully everything will go through soon. I have a doctor's appointment tomorrow....I have alot of questions for him. I'm hoping to get alot of answers as well.
Cheri
> Hi Cheri,
> Wow lady! You've had quite a ride so far...this all sound so familiar.
> The out of the blue, go to the ER and days and days of trying to get
> stabilized and all WITHOUT insurance. That's what happened to my husband
> back in Nov., but the dr in the hospital only gave him dex as a treatment.
>
> I don't know if it was because he didn't have insurance or if it was
> because his kidney function was so low. Either way, two months later he
> still is waiting to start Velcade and Revlimid.
> I was able to get him insured thru PCIP. I don't know if you've applied,
> but you will most certainly be accepted!
> Keep us posted and good luck!
>
> Lisa
Lisa,
Thank you for your reply. I haven't applied for PCIP as of yet...I am waiting on the disability to come through. My doctor does not want to release me to work since my job before all this was waitressing...I don't think I could really do the job efficently at this time and neither does he. I'm sorry that you and your husband had to go thru anything close to what I have been through with this. It has been mind blowing to say the least. Hopefully everything will go through soon. I have a doctor's appointment tomorrow....I have alot of questions for him. I'm hoping to get alot of answers as well.
Cheri
-
Cher - Name: Cheri Fitzgerald
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Nov 2012
- Age at diagnosis: 54
Re: My Name is Cheri
Ricardo wrote:
> Hi Cheri,
>
> I've been meaning to reply to your posting ever since I first saw it, but
> just never got around to it. Sorry for the delay.
>
> As twizzler said, that is some ordeal that you went through. Wow! I'm
> glad you had all your friends and family to look out for you, and, even
> more so, I'm glad you're responding to your treatment.
>
> To really understand the disease that you now have and how it is treated,
> there is no way around the fact that you're going to have to read a lot
> and, if possible, talk to a lot of people.
>
> There's a lot to learn, but just take it one step at a time. Fortunately,
> with the treatments that are around these days for myeloma, you should have
> plenty of time to do the learning you will want to do.
>
> If you have questions about what you're going through and your treatment
> options, the best thing to do here in the forum is to post specific
> questions. That will get you the most help. General questions are just a
> lot harder to answer.
>
> Also, don't forget that there's a search feature for both the forum and a
> separate search box at the top for the rest of the site (news articles and
> columns). Both are useful for digging around for information on specific
> topics.
>
> Best of luck to you. It sounds like you're making great progress.
RIcardo,
Thank you for your reply. I am researching everything I can. I don't understand everything but I'm at least trying. Like I replied to Lisa I have an appointment with my doc tomorrow and will be asking many questions. I really didn't know what questions to ask but I guess none are bad questions.
I am making progress with Velcade and kinda hope we can stay on this for awhile. I'll be finding out more about the SCT tomorrow as well. It has dawned on my that I really don't know much about where I'm at personally with the multiple myeloma. I will find this out at my visit. Maybe I've been in a daze since all this has happened...and I think I have. It's time to find out more about what can and what will be done to help me.
Cheri
> Hi Cheri,
>
> I've been meaning to reply to your posting ever since I first saw it, but
> just never got around to it. Sorry for the delay.
>
> As twizzler said, that is some ordeal that you went through. Wow! I'm
> glad you had all your friends and family to look out for you, and, even
> more so, I'm glad you're responding to your treatment.
>
> To really understand the disease that you now have and how it is treated,
> there is no way around the fact that you're going to have to read a lot
> and, if possible, talk to a lot of people.
>
> There's a lot to learn, but just take it one step at a time. Fortunately,
> with the treatments that are around these days for myeloma, you should have
> plenty of time to do the learning you will want to do.
>
> If you have questions about what you're going through and your treatment
> options, the best thing to do here in the forum is to post specific
> questions. That will get you the most help. General questions are just a
> lot harder to answer.
>
> Also, don't forget that there's a search feature for both the forum and a
> separate search box at the top for the rest of the site (news articles and
> columns). Both are useful for digging around for information on specific
> topics.
>
> Best of luck to you. It sounds like you're making great progress.
RIcardo,
Thank you for your reply. I am researching everything I can. I don't understand everything but I'm at least trying. Like I replied to Lisa I have an appointment with my doc tomorrow and will be asking many questions. I really didn't know what questions to ask but I guess none are bad questions.
I am making progress with Velcade and kinda hope we can stay on this for awhile. I'll be finding out more about the SCT tomorrow as well. It has dawned on my that I really don't know much about where I'm at personally with the multiple myeloma. I will find this out at my visit. Maybe I've been in a daze since all this has happened...and I think I have. It's time to find out more about what can and what will be done to help me.
Cheri
-
Cher - Name: Cheri Fitzgerald
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Nov 2012
- Age at diagnosis: 54
5 posts
• Page 1 of 1
Return to Member Introductions / Personal Stories