The Myeloma Beacon

Independent, up-to-date news and information for the multiple myeloma community.
Home page Deutsche Artikel Artículos Españoles

Forums

Please introduce yourself to other readers. We would like to hear your story.

I'm a lucky guy

by Blackbird on Wed Jun 04, 2014 5:35 pm

Hi, my name is Rick, and I have light chain multiple myeloma. Given that, how can I be "lucky"?

Let me explain.

Two years ago, or so, I complained to my wife about numbness in my feet. Given the fact that my dad had type 2 diabetes I figured that this was what I had, so I went to the doctor to find out for sure. Blood and urine tests were ordered and the urine test indicated a very high protein level, which prompted a referral to a nephrologist. He also ordered some blood tests, which were inconclusive, so he ordered a second set which included a test for elevated light chains. This, along with a kidney biopsy, confirmed his suspicions of light chain deposition disease.

My wife and I thought, "Well, at least it isn't cancer". Of course, we were in for a rude awakening once he referred me to an oncologist/hematologist. My first appointment with this doctor was in February of 2013.

So, given all of this, why am I lucky?

Through all of the above goings on, I was also in the process of changing jobs. I had accepted a position at The Toledo Clinic and was starting there in February. It just so happens that my new oncologist/hematologist works out of that clinic. How lucky for me! He ordered some more comprehensive blood tests as well as a bone marrow biopsy all of which confirmed that I had light chain multiple myeloma. I was soon put on a Velcade/dex regimen that was initially to last through August to lead up to a stem cell transplant in September.

Some more "luck" - due to my neuropathy, I was to receive the Velcade subcutaneously, which doesn't aggravate the neuropathy as much. To me, this was a better alternative overall than sitting and waiting for a bag of fluid to enter my bloodstream. But the best part of it was the fact that I just had to walk down the hall from where I now work to receive my treatment. Basically, get a shot and go back to work! Couldn't be much easier!

My treatment with dex and Velcade was to go from April through August of 2013 with a SCT scheduled in September. During that time I went through all of the normal testing that is associated with preparation for a SCT plus some extra kidney related tests due to the fact that I only have one kidney. I had donated the other one to my brother back in 1988. The doctor at U of M medical center was concerned that my kidney may be over stressed from the high dose chemo. Fortunately the U of M nephrologist gave the green light and we proceeded as normal.

In September I received some disheartening news. My counts weren't as low as the my doctor at U of M would like (optimally he would like them to be normal) so I was put back on the Velcade/dex regimen plus 20 mg Revlimid and my SCT was postponed until November.

That doesn't sound too lucky, does it?

It didn't to me, either, until October when I developed this really bad pain in my abdomen. Somehow, for some reason, my appendix decided that it was time for it to give up the ghost. It landed me in the local hospital for 3 days primarily because it ruptured on me. I was lucky again because the rupture was contained. The real luck with this one, however, was the fact that I was originally scheduled for the SCT in September and I would've been right in the middle of my recovery when this occurred. With literally no immune system to speak of, it could've been a bad situation. Is someone watching out for me?

On top of all of this, I was at a new job and I clearly didn't have enough paid time off available to get through everything. Short term disability helps, but I was trying to avoid too much of that if at all possible. My boss then told me that time off could be donated from others within the clinic and he would put the word out. As LUCK would have it, 5 weeks were donated! I ended up only needing less than 2 weeks of short term disability.

After all of that, my SCT was pretty much textbook. The only thing that I needed was a platelet transfusion the whole time that I was in the hospital. I had no issues with any infections and was able to work from home within a month of my procedure. In January I was cleared to return to work with no restrictions.

One other piece of luck that I've had is that the way this manifested itself in me, I've had no sign of any bone lesions whatsoever.

I have a wonderful wife, family, and friends who have stood by me through this whole process and have given me the encouragement that I needed to keep on keeping on.

My name is Rick. I have multiple myeloma, I'm in complete remission, and I'm a lucky guy. 8-)
Last edited by Blackbird on Thu Jun 05, 2014 8:36 am, edited 1 time in total.

Blackbird
Name: Rick Crow
Who do you know with myeloma?: Me
When were you/they diagnosed?: Feb, 2013
Age at diagnosis: 53

Re: I'm a lucky guy

by KimT on Thu Jun 05, 2014 12:48 am

It's all on how you look at things, isn't it?

I'm lucky too. I was diagnosed with amyloidosis and smoldering multiple myeloma before I was actually feeling sick. I've been on chemo and am preparing for my SCT, but have been very active and basically leading a normal life. I count my blessings every day!

KimT
Name: Kim Tank
Who do you know with myeloma?: Me
When were you/they diagnosed?: July 2013
Age at diagnosis: 53

Re: I'm a lucky guy

by Smittie on Thu Jun 05, 2014 6:54 am

Rick and Kim ...... I am a lucky girl who got to read this.

I was diagnosed with smoldering myeloma just 3 months ago and it doesn't appear I will stay here very long. Rick, I needed read your perspective to be reminded to look at things more positively. And to read you both are doing well ... I feel some hope returning as I continue tests today.

Smittie
Age at diagnosis: 54

Re: I'm a lucky guy

by Blackbird on Thu Jun 05, 2014 8:56 am

Attitude is everything. Grab ahold and embrace any and all of the good things that happen because of this. Accept all of the love and caring that is offered to you from your family and friends and love them back. Laugh at jokes! Tell jokes! Do everything that you did before you were diagnosed. I'm a firm believer that a good attitude promotes the healing process.

Don't get me wrong, I still have my moments. How can we not given what we have? But I try to put that behind me as quickly as possible and get on with the here and now because that is what is important. Everything else that may or may not happen is in the future and I'll deal with it when it becomes the here and now.

Blackbird
Name: Rick Crow
Who do you know with myeloma?: Me
When were you/they diagnosed?: Feb, 2013
Age at diagnosis: 53

Re: I'm a lucky guy

by Nancy Shamanna on Thu Jun 05, 2014 9:14 am

I also feel lucky ... insofar as I can being a cancer patient, and having the worries that are associated with that! i feel particularly lucky that I live in this time and this place where effective treatments are available for myeloma. If I had been diagnosed 20 years ago, I most likely would not have survived this long! Feeling lucky and having an awareness that not everyone is so fortunate propels me along with volunteering for myeloma issues, in particular advocacy for better treatments.

When you read the front pages of the Beacon, and try to learn about all of the scientific advances being made to control myeloma, it makes one aware that there will be a lot of work to be done before these advances are available to patients, outside of clinical trials. And I feel lucky to be part of this new wave of learning!

Nancy Shamanna
Name: Nancy Shamanna
Who do you know with myeloma?: Self and others too
When were you/they diagnosed?: July 2009

Re: I'm a lucky guy

by Jerseygyrl on Thu Jun 05, 2014 11:34 am

Rick,

Thank you for your inspiring post :D

I wholeheartedly agree with you Rick, a positive attitude promotes the healing process, I am currently reading Robin Roberts ( Good Morning America ) book "Everybody's Got Something". The book is her journey with breast cancer & MDS ( pre-leukemia ). Reading this book, one thing that stands out is her positive attitude throughout the most dificult time of her life. Sure she had her moments of fear & frustration but, she never allowed it to get her down. She is an amazing woman and I highly recommed this book to everyone. It will teach you many lessons about illness, love and life.

Your post really inspired me. My loved one, like you, has light chain myeloma. He has done remarkably well with the chemo treatments ( only minor side effects ). He will be undergoing pre-testing for stem cell collection later this month. No one said this journey was easy. There are things you can not control but, you do have control of your attitude and how you look at things.

Keep on keeping on Rick!

God bless you,
Kim

Jerseygyrl
Name: Kim
Who do you know with myeloma?: My Loved One
When were you/they diagnosed?: February 2014
Age at diagnosis: 58

Re: I'm a lucky guy

by myeloma_dad on Thu Jun 05, 2014 7:05 pm

Can you elaborate on your "neuropathy" you experienced.

My dad is taking treatment for multiple myeloma and he is also a diabetic type II and just recently was having extreme pain in his hips then the front thigh muscle and now he cannot walk without the help of a walker because, like he explains it "his knees gives out, without warning." (He already fell 4 times)

They did numerous scan, MRI, ultrasounds and all was negatives as for myeloma being the cause of this, so they are saying it's probably caused by his diabetes. I did some search and the proximal neuropathy is exactly what he is experiencing and I was wondering if you were talking about the same. The text I was reading said that the only way is to control his sugar but these meds are raising his sugar level considerably.

I just want to know if his muscle strength will eventually return.

concern daughter

myeloma_dad

Re: I'm a lucky guy

by Blackbird on Thu Jun 05, 2014 11:58 pm

Myeloma_dad,

My neuropathy was likely caused by my myeloma since I don't have diabetes (that possibility was ruled out first by my initial blood tests). When I went to a neurologist about it he told me that it was "idiopathic", meaning that there was no apparent reason for it. At the time I had yet to be diagnosed with multiple myeloma.

I hope that your dad can get his sugar levels under control. It's not a good thing when treatment for one health problem aggravates another.

Rick

Blackbird
Name: Rick Crow
Who do you know with myeloma?: Me
When were you/they diagnosed?: Feb, 2013
Age at diagnosis: 53

Re: I'm a lucky guy

by Alex on Fri Jun 06, 2014 6:51 am

I,m a lucky guy too...hold on, just have to empty the bedside bucket,....as I was saying, I,m so lucky to be living this...oh god, my port is leaking and the nurse has gone to town to get some anti diarrhoea paste. Now, where was I, oh yes, I,m so lucky to be..........wow, this shingles is really humming today, hope my skin stays on!!!!
Now, I,m so lucky to have this condition I can hardly............oh bugger, the zometa has kicked in and my gums are bleeding but I do feel as though things are on the up...I,m so lucky that I have.....hey no one has rung for over a month now, maybe that's a good thing as I ,m not much fun to be around but hey, I,m lucky......that's it...i,m off to bed, my bones hurt, I have blurred vision, my shins are killing me and my finger tips are on fire, but I keep telling myself.....I am lucky...I can't get to the post box to get those bills that keep rolling in!!,

Alex

Re: I'm a lucky guy

by Blackbird on Sat Jun 07, 2014 12:49 am

Alex,

If I've offended you or anyone else on these forums, I apologize. That was not my intent. This is a devastating disease and will likely take my life eventually. If that's what you want to read, then there it is, but I refuse to wallow in self pity or look for pity from others.

I'm happy with the life I've led and I'm determined to be happy with the rest of the life that I have left. How much of that I have, only God knows, but I will live it to the fullest and fight for as much as I can get.

If you're looking for pity from others, I guess you've achieved that. I truly hope and pray that you find some happiness in your world.

Rick

Blackbird
Name: Rick Crow
Who do you know with myeloma?: Me
When were you/they diagnosed?: Feb, 2013
Age at diagnosis: 53

Next

Return to Member Introductions / Personal Stories