[Comoxguy]

Comoxguy's introduction

by Comoxguy on Wed Jul 23, 2014 10:42 pm

Hi Everybody,

My name is Steve, I'm 44 years old and I live on Vancouver Island. I was diagnosed with multiple myeloma after believing that I had a chondrosarcoma for a few months. On April 6th of this year I had a small headache which was on a Friday that escalated and on the following Tuesday I was told that I have a "mass" in my head.

After a bunch of consults it was believed that I had a chondrosarcoma and a first of two surgeries was scheduled starting June 6th to get as much of the tumour as they could. Because it was in such a tight spot against my carotid artery and many other sensitive things, they decided not to do a biopsy in advance and would just do the biopsy at the same time.

During that waiting time for surgery I felt a crunching feeling in my head which turned out to be my bone fracturing inside my head. I was scheduled for surgery on June 6th but ended up in the hospital a week earlier to manage my new pain.

I did end up getting an endoscopic surgery for 9 hours and they were able to remove 70-80% of my tumour, which was awesome! This also meant that they didn't need to do a second side skull surgery as originally planned because of my new diagnosis, but 1 1/2 wks later did have to fuse my 1st and 2nd vertebrae and install some rods, a plate, and graft a hunk of my hip on there because my neck wasn't going to be strong enough to support my head anymore.

The sh-tty thing was they discovered during surgery and by doing a biopsy at the same time that the problem was a suspected plasmacytoma instead, and all my research had been on something I didn't have. I have since had multiple myeloma confirmed and I am told I have a good / fairly good prognosis, with 10-15% in my blood, and my age.

I have since learned quite a bit more about multiple myeloma than I knew before, but am definitely overwhelmed. Emotionally I have done so good and stayed very positive from the beginning, but it certainly seems like so much more of a challenge when you are dealing with words like uncurable.

I would be pretty certain that we all have our different stages to go through to get to be who we need to be to get through this, and want to thank everybody for their stories. Even though I have many loving people in my life, it is very comforting to read the stories of the people that know first hand.

Thank you.

[Joy]

Re: Comoxguy's introduction

by Joy on Fri Jul 25, 2014 7:01 am

Hi Steve,

You are a strong person! You've already been through a lot and have a great attitude. Best wishes for positive stuff to come.

That's great about your prognosis!

[inky100]

Re: Comoxguy's introduction

by inky100 on Fri Jul 25, 2014 9:58 pm

Hi Steve,

I know this whole thing is overwhelming, and you're right, there are a few of stages we have to go through, physically and emotionally, in order to get to the place where we can deal with all this new stuff in our lives. I'm so glad you have a strong support system, and I'm glad you've found this forum. There is a lot of information here, and a lot of good people who understand what you are going through.

Stay strong, and God bless,
Mary

[Nancy Shamanna]

Re: Comoxguy's introduction

by Nancy Shamanna on Fri Jul 25, 2014 11:38 pm

Hi Steve, I am sorry to hear about your problems with the plasmacytomas and having to have surgery. This sounds like a rough way to find out you have myeloma.

I think if you can find some others to talk to in person as well as online, it might help too. It's a lot to think about when newly diagnosed. I find the Beacon site to be very helpful in learning about myeloma and connecting with others.

Best wishes to you!

[Comoxguy]

Re: Comoxguy's introduction

by Comoxguy on Sun Jul 27, 2014 3:57 pm

Thanks Everybody for your comments. It's comforting to not feel alone.

I really hope a group setting can help me to understand exactly how I feel, which these days has been very up and down. I went to see a counsellor last week and didn't get anything out of it really. I felt like she didn't really understand (not that I do) what I am going through, and kinda felt like she was reading from a textbook (if that makes any sense).

Perhaps I expect or hope somebody can say or do something that will be an "aha" moment, but I am quite sure that has to come within me.

[Nancy Shamanna]

Re: Comoxguy's introduction

by Nancy Shamanna on Sun Jul 27, 2014 5:41 pm

Hi Steve,

I was wondering where your treatments would go from here? Are you seeing a haematological oncologist in the area, or do you have to travel to Victoria or Vancouver?

I understand that there is the centre in Vancouver, the Krall centre, which was funded in part by fundraising by Diana Krall and family. So I know that Comox / Courtenay is a smaller centre than the two largest cities in B.C., but also that there are many doctors in your area.

Hope all goes well with you too!

[coopershawk]

Re: Comoxguy's introduction

by coopershawk on Sun Jul 27, 2014 10:00 pm

Hi Steve,

I'm in the Victoria area and see an oncologist at the BC Cancer Agency in Victoria. I had a stem cell transplant at the Vancouver General Hospital in 2011 and so far, so good. I've had no further treatment, but some of my numbers are starting to climb, so treatment is probably not far off.

Where are you being treated? I don't think we have a lot of options on Vancouver Island.

All the best!