[Riza43]

New to the Forums, 2-3 years with multiple myeloma

by Riza43 on Fri Aug 16, 2013 8:07 pm

I am not sure where to begin, so I guess the beginning of this journey is the best place.

In July 2010, after fighting one of my many colds, I had a physical with requisite blood tests. My Nurse Practiioner called and wanted to do them again, because my protein levels looked odd. Retest showed the same thing - a little high. I was in the middle of changing my diet to a Paleo/Primal diet and didn't really think too much about it. My upper arm, neck and hip pain were getting a little better, so I thought I was headed in the right direction. I still felt "not right", but didn't get another blood test done until December. She also did the test for the resistance band, but didn't tell me why until December 28. She called me that night and gave me the "possible" news and told me to make an appointment with the oncologist she recommended. I was in a state of shock - Cancer/Me?..

I had researched multiple myeloma by the time I had my first appointment, but I was not prepared for the duration and pain of my first bone marrow biopsy. I was treated with Revlimid and Dex for 6 months and then had to have an appendectomy. They had found a Carcinoid Tumor on my appendix. It was very small. I had to quit taking all Chemo drugs having achieved a good partial response. The Carcinoid tumor hasn't returned and I am hoping that it won't as long I don't take Revlimid again.

I have struggled with pain and fatigue at times and finally found a Chinese medicine doctor that has helped with both. I have also come to realize that I am very good at stuffing my emotions and not dealing with them. I don't think it is an accident that 2 years later, I am facing treatment again. I have had a biopsy done again, which was a battle in and of itself. I refused to have it done the same way as last time. I will find out the results on Monday and work on deciding what to do next.

The hardest part of all this now is the lack of support and understanding from "friends". The first time, I had emotional support. I am wondering now that maybe my situation was novel and interesting the first time around, but this time-not so much. That is why I decided to use this Forum and I also contacted 4th Angel for a mentor. I know that I am better off than some, worse than some and like many. I know I can't do this again by myself.

Thanks for being there...

[Denise H]

Re: New to the Forums, 2-3 years with multiple myeloma

by Denise H on Sun Aug 25, 2013 4:30 pm

Hi, Ranetta--

So sorry you have to deal with this disease, but this is an excellent site for advice and information about treatment options, etc.

What no forum can do, though, is replace having friends who are present in your life. Maybe out of a bit of depression, or anxiety, you are feeling like your friends don't care. I bet they do. If I were you, I would talk to a few of them and get an understanding that their support is very important to you, and that you would like to be able to call on them from time to time to listen or maybe to assist you in practical matters.

I wish you the best and hope you respond well to your treatments.