Wednesday, July 6, 2011

Getting to a diagnosis part 2

A continuation of yesterday's post...

In I go to Boston. I see a wonderful rhemetologist at Brigham and Women's. He takes my history, looks at all my latest blood work and says "there is something amiss here, now to figure out what it is."  He threw out a few ideas. 

Maybe Fibromyalgia? Although I do have pain, it's not a constant pain and there isn't any pain to the touch.

How about Sjogren's Syndrome?  He sent me to an ophthamologist to confirm. It turns out that I don't have Sjogren's, but I'm still not 100% convinced it should be taken off the table. There isn't a "concrete test" for Sjogren's. There is a "marker" in the blood which I had at one point. When I was last tested it was normal? I do have a lot of the symptoms, they just aren't severe. 

He runs more tests. Again, needed to rule out the "big one" - Lupus. Also checked for other abnormalities in my blood. 

I have to say it was so refreshing to have a doctor not say I was crazy!!!  

Anyway, few weeks later I go in for a follow up visit to get my test results and let him know what the opthamoligist had to report. This time I have a new symptom. My fingers are a purple/blue color. My toes are achy in the cold. Raynaud's Syndrome! (Is nothing to really worry about - just annoying) Bring on more blood testing! 

About a week later I received a phone call from the Doctor himself. Never a good thing, right? He said to me "Jenn, you have what's called Monoclonal Gammopathy of Undetermined Significance, MGUS for short. Please don't Google it because it will scare you. I don't think it's anything to worry about but is worth exploring further. You'll need to see a hematologist." I asked for a suggestion on who to see and was led to Dana-Farber Cancer Institute

Of course when I hung up the phone I immediately went over to my Mac and started searching. The results were all doom-and-gloom.  I shut it all down. Not looking. Doc said he didn't think it was going to be the bad stuff, I won't go there until necessary. 

I should add here that I also have numbness in my arms and hands. The good-doc told me to follow up with a neurologist. I went in...did a bunch of testing there, including an MRI -checking for MS, which my Mom has. 

I have my MRI two days before heading to Disney for a much-needed family vacation.  I was successfully able to block all of this out so I could enjoy my time with the fam. 

Upon my return from vacation, I go into Boston for my appointment with the hematologist/oncologist at Dana-Farber. I'm scared as anything. Let's face-it, I'm walking into a Cancer Institute!  We get there with this packet of info in hand telling us where to be and when. There is a lot to do when you need to go to Dana-Farber. It's not a "pop in and out" sort of visit! First it's off to the lab for blood, then it's up to the doctor's office to wait for the results. I'll save you all the details from the first visit - just suffice it to say that we were there for a good 3-4 hours!!! Stressful!!! Please note: It's not a typical wait time over there, the Doc was running behind. He took a lot of time with me, never made me feel rushed. 

I meet my new Doctor. He runs through my recent (that day's) blood work. Tells me all about MGUS. Explains to me that it can be associated with Multiple Myeloma (cancer).  Continues on to tell me that it is so rare to find Multiple Myeloma in someone my's probably nothing but wouldn't be doing his job unless he checks. Guess what the checking involves?  A bone marrow biopsy! 

February 15, 2011, I go in for the biopsy. I remember the date because it was my late grandfather's birthday, I knew he'd be with me the whole time. I'd like to tell you the biopsy wasn't as bad as it sounds. I can't do that. It was worse. I wasn't myself for a good week afterwards. Just keeping my fingers crossed I'll never, ever have to do it again. 

February 28: Results day. Can't wait to hear what the doc has to say. I head into Boston with my mother in tow. My little guy was sick the night before and hubs needed to take him to the doctor. There is no-way on God's Green Earth anyone should ever go to Dana-Farber alone. The doctor walks in the room with my file. I can't read his face. I just want answers. He sits down. "Well, I'm glad we did the biopsy because next time we'll...." WHAT?!!?!  He continues to explain stuff to me, I'm no longer listening...still stuck on "next time"! My Mother is tapping my leg, waiting for me to say something. I couldn't. I was shocked. There was no-way I was ever going to have a bone marrow biopsy done again. Ever! Now, suddenly there's a next time?!

Guess I should listen, huh? What Doc was saying was that I have 10% something or other of bad cells in the marrow. It doesn't mean that I have Multiple Myeloma. Not by a long shot. He repeats and makes me repeat a million times over "I DO NOT HAVE CANCER!". But...

What I do have is Smoldering Myeloma. (I can't find a proper link for this because it all ultimately will lead to Multiple Myeloma). In my mind, I have a death sentence. Crap! I was planning on having another baby this year. Now what? Now I have to plan to not see my babies grow up? 

So not the case. Doc set me straight. He told me I'm going to have days when I cry. Just as long as they don't take over, I'll be OK. He set up a Q&A session for a few weeks out so I could go home and digest my news. 

And that's what I did. The thinking started. By day I was happy-go-lucky. I felt like I could handle this. Just need to turn things around and FIGHT! Damn it!  I am not going anywhere! By night, total different story. The kids would be sleeping, the house is all quiet and I am alone with my thoughts. Doom and gloom. That lasted for a few days. 

I woke up one morning and started the good fight. I don't plan on leaving this planet until my kids have graduated high school (at least!). I am not going to sit here and wallow in self-pity, although I do reserve the right to once in a while. 

And so began my quest for health. This isn't something I did to myself. I know that, now. After a long talk with the doctor and lots of research, I know it's just something that happens. I am in a small percentage group of people with this MGUS/Smoldering Myeloma. It sucks, but I am here. It's what I choose to do with my diagnosis that matters. 

So, there you have it.


  1. At least they found out what it was so you're not in the dark! {{hugs}}

  2. I've had two bone marrow biopsy's. They are not so fun. Was so scared the first time! At least you get good drugs though. Lol. I'm glad they found out what is wrong at least. What a scary journey. You sound like you have decided to have a positive attitude and I think that is what will keep you going!!

  3. Thanks Ladies!

    @Lindsey - I am so sorry you've had to have 2 biopsy's done! And I'm jealous you got drugs!!! They don't give you anything at DF. I had a numbing agent but once they get to the bone it's all me. I took Tylenol afterwards - that was it. My Doc did say he'd send me to another facility next time though so I can be knocked out (well, partially sedated).