A quickie

Thought I would pop in for a quick update.

I saw the Doctor at Dana Farber on Wednesday and received some really good news!  I am "graduating" to a 6 month check up rather than every 3 months. Everything has been stable and so long as it stays that way over the next 3-4 years, he'll consider moving me to a yearly check up. I couldn't have been happier! (and here are some posts relating to what I am referring to incase you missed them)

Part one
Part two
What it all means


The sad news is that I can't fit into my jeans. So, I hired a personal trainer!  I am going "balls to the wall". Enough is enough. I want my health!

Will be back late next week after my mini vacation with an update about the personal training.

Check up day

Well, that was fun! The drive in to Boston started out just fine but ended up being a nightmare (nothing new, really) when I hit the city outside of the City. Without any traffic, it would normally take about 45 miniutes to reach the hospital. Today it was almost 90 miniutes. And I wonder why my blood pressure is high when I come here.

Maneuvering the parking garage is always fun too. Dana Farber's garage is 7 levels under ground. I'm parked on level six. Going to be packed in there for sure!

Get off the elevator and the smell hits me. Hits me hard. The smile on my face has just turned into a worried and sad frown. This building has a smell to it that I just can't explain. It always hits me like a ton of bricks. It is the smell of sickness.

Start walking over to the lab service area and notice the check-in desk has moved to the front of the room. No line. I check in and am given this yellow tag to wear so they can track the wait times and know where I am in the building should they need to find me. Tag. I'm it.

Now that I have my yellow tag and my standard issue wrist bracelet with all my info on it; it's time to sit and wait. The waiting room, per usual, is a sea of sick people with their concerned loved ones in tow. There are few empty seats. I finally find a spot where my husband and I can sit together. We sit. He asks if I am ok. Yes. No. Seeing all these people here, oxygen tubes and those doctor face masks hide a lot of faces. This place is full of worry. Cant't wait to get upstairs where it isn't as bad.

I'm called almost right away. I recognize the phlebotomist and panic. I had her last time. I am a difficult stick. Very difficult. She had a really rough go last time. This time I opted not to warn her about my difficult veins. She did "get me" on the first stick though. One vile anyway. My vein was on the verge of collapse when I told her that I am difficult and reminded her of our last visit together, not that I expected her to remember me. Anyway, we had to find another vein. And so began the poking and digging and heat pads and squeezing...after five miniutes she finally found a good one to fill the remaining five viles. I will have a bruise or two but it's done for this time.

Ok. Time to go upstairs. It's usually a bit happier up here, not as many people. And when there are, they typically aren't of the sickest. I check in, pass in my yellow tracker and am told I seeing the nurse practitioner! WHAT? I wasn't told that. I have it on my schedule that I am seeing Dr. L. She told me they tend to work off each other's schedules. I walk away with a bit of sadness and frustration but will give the woman a chance. What other choice do I have?

Now I'm in the waiting room. There are a lot of people here today. Hard to find an open seat. We do find a place to sit together and I immediately start writing. I want to remember my thought s and feelings as they happen. Looking around, I see some smiles. People are talking more freely. There is more hope in the air.

Here I am blogging.

A hospital volunteer just approached us to inform us of all the benefits and programs the hospital has to offer. They let you borrow iPads for example. Yup, I meant to grab one on the way up so I wouldn't have to type on my iPhone. Oh bother! She also informed me about a program the hospital has where you can create a web page to keep people informed of your treatment and how you are feeling. "Thankfully I'm not at the point of needing treatment", I politely say and continue with "you all do a great job of keeping things around here more upbeat". We have a few more words and I'm back to blogging on my little iPhone.

In I'm called to the office. Waiting to meet Dr. L's nurse practitioner. Ginger is her name. In she walks introducing herself to me and asks quizzically who the person next to me is. "and you are?" she asks. "I'm Rich" says my husband. She looks at us both with a confused look and asks if he's my brother? WHAT! I know we are both plump and blonde, but I dint't think we look like we come from the same bloodline. "no" I say. He's my husband. She chuckles and says we don't look old enough to be married. Ummmm.... I'm 36, but thanks.

We continue exchanging the niceties. Turns out she grew up in the town I live in, which so happens to be the town I grew up in. The banter continues before she asks me how I've been feeling. "OK, been having some bone pain and my hip is now hurting. My hip and my shoulder. It's a new pain. Mostly a discomfort, but sometimes a pain". She asks me a few more questions before giving my tests results, the ones that are ready. Everything is within normal range. So that is all good.

She went over what all my numbers are and why I am categorized as a MGUS/Smoldering Myeloma patient. Dr. L does this at every meeting and with each meeting I understand things just a little more. So, we all have some protiens in our blood. They are there to help with infections and things like that. The problem is that I have an extra protein; a Gamma M Spike. Mine was .81 at diagnosis. The troubling part is that even that number is relatively low (should be zero), so one would think I wouldn't have plasma cells in my bone marrow. I did. 10% back in Feb of 2011. That is what put me in the category of having Smoldering Myeloma. But, because my M spike is so low in my blood, I am still in the MGUS stage. Although, I have Smoldering Myeloma. Is your head spinning yet?  Mine is. Deep breaths.

So, my numbers last year:
1/11: .81
2/11: .94
6/11: .74
10/11: .72

Hopefully the number this time will continue on that downward trend. I will know on Tuesday or Wednesday of next week.   So, if you are really confused, no worries. I'm not the best at explaining all this. I have a hard time understanding it myself. Just know that everything is status-quo for now.

OK, blood is discussed. I am healthy. What about this hip thing?
She calls in Dr. L. He ordered and X-ray and said if things don't improve over the next month (been getting worse since November), he'll order an MRI.

Now, while we were waiting for Dr. L to come in, I decided to ask Ginger about my "pressing" question on whether or not it's OK to have another baby. Her first question; "why would you want another one"  I was taken aback by that question. She went on to tell me she's not the one to ask because she has a disease that could be passed on to her children so she opted just to have one. I tried to clarify that I wanted a scientific answer. Hubs asked whether or not it would/could make things progress. She again said she's not the one to talk to about this and I should talk to my OB.

I felt so little. I felt like I was being judged. It's not up to her to judge me and my decisions or thoughts on enlarging my family. It's something I've always wanted to do. I planned on having three children. The third one would be here (providing everything went well) by now had I not been diagnosed with the MGUS/Smoldering Myeleoma.  I know this is ultimately my decision. It's a difficult one to make. Yes, I know I have two beautiful children. I realize I *should* quit while I'm ahead. I'm not asking for a moral debate; I was asking for some science. It's left me feeling real bad. I will get over it.

X-ray went fine. Everything was ok. No lesions. That's a great sign! Not sure what it is. Took a urine to check for UTI. We'll see.

Four and a half hours. That's the time I spent at Dana Farber today. I sit here tonight happy that I am still healthy. I sit here happy that I am *probably* a long ways from being sick. But, I am also sitting here exhausted. Emotionally and physically. Seeing sick people, being judged about the possibility of having another baby, and just being is exhausting.

Tomorrow is a new, brighter day.

Pain, Pain, go away!

I'm starting to have a rough time with my pain levels. I haven't had much by way of bone pain all summer long and here we are about to enter the long, cold months of winter and I am starting to be in pain. Again. It was just about a year ago that I had the worst pain in my leg - ever. I wanted to cut it off. Just recently I had a similar pain in my hand. I've also had small pains in my hip. I just keep fluffing it off, hoping it's just in my imagination, but it's real.

I am 36 years old. I shouldn't have all these "ailments" (as my late grandmother would say). But boy am I feeling old today!  My fingertips are starting to turn a dark purple/blue color from the Raynaud's and my hand just aches. I'm doing everything I can to just not cry. I don't want to cry because the pain is unbearable (it's not), but because of the utter despair I feel. What is going on with me?

I was virtually pain-free all summer long. I felt great. Today is a totally different story. I feel like everything is falling apart. I'm finding myself desperately searching the internet for answers. I'm even thinking about doing the gluten-free thing again for awhile to see what happens. And yet, I am also thinking that there is something about environmental changes that my body just. doesn't. like.

When I was thirteen I went swimming in my very cold pool in late May. I would beg and beg and beg my father to open the pool and he ultimately would just to keep me quiet. Well, that particular year I jumped in the pool did my swimming thing, came out and had all these bumps all over me. Didn't know what they were. Whatever. I warmed up, went back in and after awhile came back out again. I will never forget what happened next. I was standing on our back deck chatting with my mom, grandmother and my friend. I was all wrapped up in a towel, still wet from the pool. When all of a sudden my limbs got weak. I rushed to sit down. I could only think. Speaking was so difficult. There was a ringing in my head like you wouldn't believe. I was trying to say "call 911" but I couldn't muster up the energy. Then I started to lose my eyesight. I guess I did say that allowed because my mother pushed my head down between my legs so I wouldn't pass out. After warming me up a bit, I was able to get dressed and warm up in bed. I remember my grandmother coming in to check on me and she commented on how grey I was. 

It turned out that I had cold-induced urticaria (hives). The doctor told my mother how lucky I was that things didn't go worse. Basically, I was lucky to be alive. I should have gone to the hospital that day, but I luckily had an angel on my shoulder that day. 

As it turns out, I have urticaria again. This time it's heat-induced.  I thought I wrote about it over the summer but I can't find any such posting. I had a rash over the summer. I got the same rash the previous summer too. No one could tell me what it was. I had a biopsy done this summer and it turned out to be urticaria, most likely from the sun. When summer ended, so did the rash. 

So, this is what is making me think my symptoms are environmentally triggered. This pain I'm having, I've had for the last 3, maybe 4 winters. Getting worse with each passing year. So, needless to say, I am back on the warpath of finding out just what is going on with me. I've set up another appointment with the rhumetologist. That appointment is in early December. Until then, I will be here reading and reading and reading; searching for answers. 

I don't mean so sound like a Debbie Downer. I really don't. I've always said "I have MGUS, it doesn't have me" and that still holds true. When you're in pain though, the game changes a bit...I just want answers. 

Post Check-Up

Have you ever noticed when you hear an old song on the radio, you are snapped back into a memory from that time period. Like when I hear Prince's Little Red Corvette, I think of my girl friends from high school and how we'd turn the radio up as loud as it would go to sing and dance like a bunch of mad people. Or when I hear Lonestar's Amazed I am right back in my husband's arms wearing my wedding gown dancing our first dance at our wedding.

Or how about when you buy a new package of Scotch tape and think about Christmas (that's what I always think of anyway). When you pop open a new box of Crayola Crayons and think about the days of elementary school.

I am sitting in the waiting room of Dana Farber Cancer Center. I just washed my hands and am overwhelmed by the smell of the soap. The soap smells of a serious illness. How do I know what a serious illness smells like? Does illness even have a smell? If it did, it would smell like the soap at Dana Farber. Which is just silly because when I was here nine months ago, I thought the soap smelled of babies; reminding me of the birth of my boys. It's all relative now though. I am no longer birthing babies but rather fighting to keep myself cancer free.

I started to write this entry while I was at my appointment yesterday. I'm usually in the waiting room a long time and really wanted to capture for you, and me, what I feel like and what I am really thinking while at the center. I was called into the offices rather quickly though so wasn't able to really finish my thoughts. It's OK. Next time.

That all being said, my visit went rather well. Still don't have the results back on the protein levels (that's an important one for my condition), but everything else was OK. I did ask Doc about my Raynaud's. It seems a lot worse than last year. My fingers and toes have been feeling the effects of the cold a lot earlier in the season. That had me a bit concerned. Doc decided to run a few more tests but the likelihood of my having whatever-it-is that he was thinking about is so slim. In other words, it's doubtful that the Raynaud's and the MGUS are related.

So, it seems I can go on about my business again until my next check up in three months. I'm not nervous about my protein levels as everything else was in check. I'm not letting the MGUS define me or control me. Although I will admit that it does for about 1-2 weeks prior to my check ups. Once I see I am fine though, I move on. This is me moving on.

Gearing up for winter

I can't believe that word just crossed through my mouth (or fingertips)! I detest winter! Seriously, I do. I don't like being cold. I hate having to go outside when it is bitter out with winds that take your breath away (literally). And forget about snow. I think snow should only be allowed during the week of Christmas just to fit the season.

The only positive thing in winter is hot cocoa. Other than that, you can have it. I would move someplace sunny and warm for most of the year but I would miss the change of seasons and I would miss the fam. So, until the fam wants to move from January through March, I am stuck here to endure the long, cold winter months.

Why am I bringing all this up before Halloween? Because I am freezing. It's not quite time to turn on the heat, so layering it is. My finger tips and toes are screaming right now! I have a glove on my left hand while my right is free to poke the keyboard on my iPhone. (times like these I wish I had an iPad). Anyway, here we are not even at the halfway point through October and my Raynaud's is acting up. So much worse than last year! Much worse. I am debating picking up some heated gloves so I don't overdose on hot tea.

And speaking of Halloween, do you dress up? We have been invited to an adult party. I want hubs to dress up as a woman. I think it would be funny because he is a big guy with a hairy chest. Not feminine at all. He's not falling for it. I am at a loss on what to be. Any thoughts?

I honestly thought things would be better with all my added exercise. Raynaud's is related to a circulation problem -amount other things. My circulation must be better with all this exercise. I guess it really doesn't matter. And my Raynaud's is related to my diagnosis. It's how my MGUS was found in the first place. I guess I just had wishful thinking. I see many heating pads in my immediate future.

What it all means

First I would like to thank you all for the e-mails and support. It really means a lot to me!

So, I have Monoclonal Gammopathy of Undetermined Significance...well, I technically have Smoldering Myeloma but my protein levels are so low that Doc really says it's MGUS. What does that mean? Well, I can tell you that it isn't a death sentence. Like I said yesterday, I do NOT have Cancer. The chances of things progressing into Cancer are about 5% per year.

Not too bad for odds huh?  Well, when I first heard those odds I was mad, angry even. Everyone kept saying "it's such a small percentage, nothing to worry about". Hrm. What about the percentage of people in my age group (under 40) who are diagnosed with MGUS or Smoldering Myeloma?  How about 1%!  I was thinking, "well, I already broke those odds who's to say I won't break the next set?"

Today things are a little different in my thought process. I know understand that IF things do progress, it will be caught VERY early. I will be checked once every 3 months for a year and as long as things are status quo, it'll change to every 6 months for the rest of my life.

I know I'm in GREAT hands. My doctor is wonderful! He took the time to listen to me, he's answered every question I've had and he makes sure I know that I'm not facing a death sentence. Instead, I am facing life. And that's exactly what he tells me at the end of each visit, "get out there and live". Since being diagnosed, it's been a mission of mine to do just that. For so many years I've sat by the sidelines watching as life goes by. I've let myself get by with the bare minimum of what I've wanted out of life. Sure, I have the big things...I have my supportive husband and my two boys who mean the world to me. But I want more. I want to be able to get in there and really enjoy my time with them...and I am on that path.

I still have a lot of research to do. Lots of questions are still left unanswered. But I don't dwell on it. I do the best I can with my diagnosis. It's not controlling me. I'm living.

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 age...it'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.

Getting to a diagnosis

Note: I started to write this posting a few weeks back when I had a follow-up appointment with my doctor. It's been something I've been struggling with for a lot of different reasons. Alas, here it is....


I Just took a huge sigh of relief. I guess I was more stressed and worried than I originally thought I was. Maybe the worry has been part of the reason for my sour mood? Maybe the worry is why I'm a little slow with the weight loss as of late. Time will certainly tell.

Now, just what am I talking about?

Well, it's a long story really. And it's something I've debated putting out here for all to see. Maybe now is the time...

Let's go back a few years in time...

I've been complaining to my (then) primary care doctor about a number of different ailments. I was exhausted. So exhausted that I would sleep most of the day. I could hardly hold my frame up. I was always told "you're a Mom. We moms tend to wear ourselves out, you'll be OK". I believed it. Kind of.

Not only was I tried, I was  becoming forgetful. Not just "where did I put those keys" kind of forgetful. Nope. I was forgetting words. I could tell you I wanted "the thing that you write with, it has blue ink in it" without being able to find the word for pen. I shouldn't be writing in past tense here. This kind of stuff still happens. Regularly.

I forget my friend's names from time-to-time. I'll be telling a story about someone and completely forget their name. I know where they live, I know how many kids they have, I know all these details. Can't. find. their. name.  It even sometimes happens when I am talking to someone. I'll go to say their name and can't, because I don't know what it is - for just a long scary moment.

Oh, and how about the other day when I was walking out of Michael's and lost my car. Seriously. There are 3 rows I could have parked in. I started to panic. I told myself to calm-down, take a deep breath and relax. I found the car no problem. Just had an anxiety attack in the process.

For a while I was thinking this brain thing was just in my head (haha). I have a friend who's witnessed it in action; she asked me if I may be having a stroke. Nope. Just can't remember $hit.

Scary stuff, right?  Yup. And Oh, I am just getting started. Although the rest of it isn't that scary, well, maybe a little scary. I'll be all right. I hope.

Tons and tons of blood testing came my way with lots of different theories...

I have an elevated Sed Rate.  "Nothing to worry about. Just means you have inflammation in the body. You're probably developing an auto-immune disease"

A vitamin D deficiency was also found (in August!! and it's no longer the case)

And I can't forget my favorite blood test result. The one that showed I have Hep C. WHAT?!?!  No worries, it was a false positive (after lots of testing and retesting and a trip to Boston to see a gastroentorlogist).  This one boiled me though. I am not (never have been) a drug user and I've never had a blood transfusion so how could this even happen? No one could answer!

More testing.

Lyme Disease? Nope
MS? Nope
Lupus. Nope, but maybe. Probably not. Best to get more opinions on that one. Finally came back as a no.

I do research on my own. I feel like crap. I need it all to stop.

I read all about different diets and pills and supplements and, and, and....

Ended up trying the gluten-free thing. And it helped! For all of 6 months that is. I felt great!  My speech pattern was better, I was energized and ready to go and all the other ailments were at bay. Life was great. 

Then a train hit. I started to feel worse than I ever had. I'm forgetting things. My energy is rock-bottom. And I have pains. Pains in my bones. Stabbing pain.

A year goes by. Still feeling like a piece of garbage. But I can't remember all my symptoms even when I was having them. That's so sad.

Fast-forward to last October....

I see my (again, then) primary care because of these bone pains and the memory issues. She says I should try coming off the Fluoxetine (I had post-partum). So I did. That seemed to help the memory stuff; only temporarily. As far as the bone pains go? She said, and I pretty much quote here..."When we doctors can't figure out what's going on with a patient, we tend to blame the patient" Nice, huh?  So, what she was telling me was that I was crazy. Great.

I had follow-up appointment a few weeks later with the Nurse Practioner. I told her about my pains. She thought I may have Fibromyaliga. Suggested seeing a rhemetologist. I explained how I had seen one before...she said "get a second opinion".

Off I go to Boston this time. Have to see the best-of-the-best. And Thank God I did!  This Doctor I saw put me through a gammot of tests! We re-tested for Lupus (it was still on the table because I had one of the markers for it), tested for this and that as well.

I'm going to leave you here. This post is getting rather long and I really want to paint the picture of what the beginning of 2011 looked for me...