Thankful Tree

Okay, okay. I promise, this will be the last unrelated myeloma post for while! Although, to some extent, it does have to do with my "permanent health kick" but more along the lines of stress reduction and positive thinking.

J and I have decided to make a "Thankful Tree" for the month of November. Well, I decided to make the tree, and have roped J in is more like it! I can't take credit for the idea, I found it on Pinterest - God's gift to the crafty and the procrastinators out there. Biggest time-suck ever! But I digress...

Thankful Tree: Every day for the month of November until Thanksgiving we will each write something that we are thankful for on a paper leaf and add it to the "tree."

The tree! Yes, a bit scary looking right now.
The branches were easy to find with the hurricane we just had! 

 

 

 The leaves and recording sheet...
A bit like a school project but whatever. :)

 

By the end of the month it will look something like this!

I am hoping this tree will be a visible reminder of some of the wonderful things God has blessed us with. J and I have hit a bit of a rough patch as of late (in more ways than one!) but we have to be positive, and we have to be thankful. We definitely do have a lot of be thankful for!

Somebodys Got A Case of the Mondays

.... BUT NOT THIS GIRL! NO SCHOOL TOMORROW!

 

Thank you, Sandy.

 

I love these cards...

 

 

....and, I have to say, I agree with this.

 

Hurricanes & Halloween makes for a VERY exciting week in an elementary school. :)

 

We missed THREE days of school last year due to power outages from the Halloween storm. Let's hope it's just one day this year!


Be safe!

Someday we'll find it, the Blue Care Connection....

So, a couple weeks ago I got a call from my insurance company. This is never good. Immediately, I panic and think, Why are they calling me? What test am I being billed for? What aren't they covering?

However, this call was from a nurse at the "Blue Care Connection." Apparently, this program allows BCBS members to have free, "personalized phone-based health support from a nurse."

Nice, right? Sure. Except my questions were...

Why are you are contacting me? How did you get my number? Do you have my records?

Paranoid? Perhaps.

The response was, "Oh no, I don't have any of your records. Sometimes medical tests or frequent activity will put members on a list to be contacted regarding this program."

Hmm. Makes sense, I guess. However, I declined signing up to get regular calls from this very, very, nice nurse.

Then, about a week later I get a letter from the Blue Care Connection people. This might have been helpful to have BEFORE I got the call from the nurse, because it actually sounds like a very helpful program when you see what it's all about in black and white. (Part of) The letter:

If you are living with a challenging health situation, you can talk with a health care professional about what you are doing right, what you could do better, and what steps you can take to achieve better health. The Blue Care Connection program gives you one-on-one professional support to help you understand your risk factors, learn how to manage any existing symptoms, and find ways to improve the quality of your life. In being proactive and recognizing changes in your health, we hope that you might be able to avoid any complications and spend less time in the hospital. {Translation: We don't want to have to pay for you to be in the hospital!}

Little do they know I am, in fact, on a permanent health kick and am doing just fine. :)

Permanent Health Kick

Recently I have been on quite the "health kick" so to speak. Dr. R said that I should be trying the "holistic" approach at this time. Meaning... stress reduction, healthy eating, exercise, and trying to reduce free radicals as much as possible. Honestly, I have never been so dedicated to anything more in my life! I have been doing yoga for stress relief (lots of laying and breathing - not really exercise - but it does relax me!), working out at the gym like a maniac, and eating an abundance of fruits and vegetables.


 

I have been drinking green tea and orange juice in the morning, and eating spinach, broccoli, berries, nuts - mostly "single ingredient foods" or "real food" if you will. I've been attempting to avoid processed food that has labels with ingredients that I can't pronounce.

I'm hoping this turns into a permanent health kick. Really, an overall lifestyle change.  The thing is though, I have never been overly unhealthy - I'm not overweight and I have always tried to eat a balanced diet and exercise from time to time. I have gone through spurts of working and out more regularly and eating super healthy throughout my life. However, this behavior usually lasts a only few weeks - often in correspondence with January 1st...

Now I am shooting for the "permanent" health kick, like I said. No more Cheez-Its or Mike & Ikes for me! Honestly, it hasn't been too bad so far. Some days I would kill for a Diet Coke during those long Friday afternoons at the schoolhouse. But that's another story. And really, who am I kidding? I'm far from perfect. I had Chinese food a few weeks ago. What's up, MSG.

 



I am hoping that this healthy lifestyle will also keep me well through the winter since the last couple winters have I had a constant cough/cold/sinus infections. Hopefully the stress reduction, healthy food, and exercise will boost my immune system and help keep me protected from my germy students!

Why do YOU need the pneumonia vaccine?

I have a love/hate relationship with medical professionals. I love them because they help people when they are sick. Obviously. I hate them when they are extremely rude and insensitive!

The past several winters I have been gotten pretty sick - chronic cough from November to April plus a bunch of sinus and ear infections. Could be from all those darn germy kiddos in my class!  Or, Myeloma Precursor Disease MGUS May Increase Risk Of Developing Infections. Take your pick. 

But anyway, back in April, after discussing this with Dr. R, he suggested I get a flu shot in the fall (I had never had one before) as well as the pneumonia vaccine sometime in the near future.

In August, I was in to see my primary care physician who wrote the lab slip for me to get the pneumovax. I walked down to the nurses station, lab slip in hand. Two gentlemen (I think they must have been nurses?) were there. I told them that I needed to get the pneumonia vaccine.

They proceeded to roll their eyes and one said to the other, "Geez, I guess we are giving everyone the pneumonia vaccine these days, huh?" The other guy responded with, "Yeah, hmmm, I wonder who came up with that, the vaccine company, maybe?"  *sarcastic laughter*

This made me a bit uncomfortable - sitting right in front of them while they talked about me. Then, the guy who was apparently administering the vaccine started asking me a series of rapid-fire questions.

Do you smoke?

No.

Do you have asthma?

No.

Do you have bad allergies?

No.

(in an irritated voice) Wellllllll, then WHY are we giving YOU the pneumonia vaccine?

I, of course, start getting choked up. Typical. This was literally just a few weeks after my bone marrow - that was supposed to be "no big deal" - debacle.

I whimpered something along the lines of, "Well...my hematologist told me to get it...I have this weird blood condition called MGUS...you probably haven't heard of it...it's not really cancer but...someday I could get cancer...and I just had a biopsy and actually now I am borderline smoldering myeloma..." 

After hearing that, he stopped interrogating me.

Seriously, if my doctor told me to get the vaccine and then my PCP approved it and gave me a lab slip stating that I needed it why do I need to be questioned? Now, you might say this guy is required to record the reason why he is administering the vaccine. Sure. However, he didn't need to act like I was requesting some sort of illegal narcotic!

Multiple Myeloma is one of the conditions listed for people who should get the vaccine. I don't have active MM but what if I did? What if I had AIDs? Obviously, I am pretty young and look relatively healthy, and I am relatively healthy, but don't judge a book by its cover! 

I think this guy felt a bad about making me upset. He was super nice after that, a little too nice. As I was leaving he got a bit emotional - no joke, tears in his eyes - grabbed my shoulder and said, "You are GOING TO GET THROUGH THIS. I see that you're married and I hope your husband is VERY SUPPORTIVE. I want you to know that if you EVER need ANYTHING, ANYTHING AT ALL, call and ask for Phil and I will do WHATEVER I can to help you."

Who's Phil? This guy? What's this crazy nurse going to do for me? I think he meant to say this to make me feel better but umm, okay...I'm not dying yet!  

Bizarre.

Kids say the darndest things! ...All day long.

As you all know, I really, really, really want to be a mom.

However, that being said, here is a brief example of what I already deal with... all day long. :)


I was discussing the word "exploration" with my second grade class.

One student generated the sentence, "I go on a exploration in my mind."

When asked to explain, she stated, "You know, Mrs. M, how I'm always daydreaming? Well, I’m doing explorations in my brain. Yeah, sometimes I'm like in Florida. I'm in Florida in my mind."
 

Well, isn't that good to know. 

You can’t make this stuff up.

Opinions via the internet?

Well, why not?!

In September, I presented my "case" on a myeloma forum and I got a few responses from patients there. I also got responses/opinions of a few actual living breathing doctors! Here is one response:



Dear Elizabeth,

There is nothing grey zone about your diagnosis. You have MGUS.

The 10-15% plasma cells was probably established by what is known as the CD138 stain of the bone marrow. This test might be a somewhat better assessment of plasma cell load in the bone marrow than the % of plasma cells identified on the aspirate, but it has caused a lot of angst for patients who would otherwise be classified as MGUS. I have many patients with MGUS who have <10% plasma cells on their aspirate and 10% or slightly more by CD138 staining. These patients have a disease course of an MGUS patient -- not a smoldering myeloma patient. And, in your case, while there was a pocket of 10-15% involvement, the overall burden of plasma cells by CD138 staining was 6-8% -- that is MGUS! I would also point out that the estimation of plasma cell involvement is VERY subjective on CD138 staining. If you have a pocket of 15% involvement over here, 2% involvement over there, 7% involvement here -- the overall degree of involvement read out by the pathologist is subjective and varies from one reader to the next.

I would be very cautious about making important life decisions on 2 bone marrow biopsies. Let's say in December that your M spike is unchanged, the aspirate shows 3% plasma cells again, but the plasma cell burden by CD138 staining is read out as 10% instead of 6-8%. That is a result within the margin of error of the test -- would you really not pursue having a family based on this information?

Could pregnancy affect things? Perhaps, but there is no good data available to help quantify the degree of risk. A diagnosis of MGUS is typically not established this early in life. That is not to say that it does not occur. It is simply to say that people your age are not typically screened. I am sure there are many other patients who presented to their Rheumatologists at a similar age with similar symptoms and never were screened for MGUS. In the overall scheme of things, I would suspect your risk is lower than say someone with smoldering myeloma with 40% plasma cells in their bone marrow and a rising M spike (I don't consider the rise in your M spike as worrisome).

Lastly, realize that the therapy of myeloma is evolving quickly and people are living longer now than they did even 5 years ago. This continues to improve as new drugs become available.

We are close to December, so it is reasonable to wait and see what your repeat testing shows. But, I would look at all of the data and not zero in on any one number -- as I said above, I do not want you to make an important decision as a result of random fluctuation in a test result.

This is an individual decision and a difficult one. But, if your testing is similar in December to what you have now (recognizing and respecting the fallibility of these tests), I would be very supportive of you moving forward with your family.

Let us know how things go in December! Good luck!

P.S. As far as the infections are concerned, I think this would only be related to your MGUS if the levels of normal IgG, IgA, IgM antibodies are suppressed. If they are not, I suspect the infections are a result of exposure in your line of work. Kids are cootie factories!

P.P.S. You are being followed at a terrific Myeloma center wiith a tremendous wealth of experience. Your physician is fully aware of what I have told you and will be able to help make you an informed decision about how to proceed, especially since they have all of the data in hand to interpret. Best of luck to you!



I have to say getting this response was beyond encouraging! Really, like he wrote, how can I change my entire life plans based on two biopsies?

An MGUS diagnosis is not typically made at my age. I often wonder about patients who are diagnosed in their 40s or 50s (or even older) with active multiple myeloma...did they have MGUS in their 20s and not know it? If they have children, did the pregnancy change anything? If they could go back, would they have NOT had children if they knew it could possibly progress their disease?

I feel blessed that I am under the care of a great physician, at a great hospital. I was diagnosed early and can be monitored closely. However, that being said, sometimes I really wish I didn't know I had MGUS. Ignorance is bliss!

And yes, kids are definitely cootie factories. :)

Natural History Study - MGUS & SMM

Speaking of second opinions....

I learned about the Natural History Study of Monoclonal Gammopathy of Undetermined Significance  and Smoldering Myeloma a couple weeks ago. In this study/clinical trial, researchers from the National Cancer Institute (NCI) are identifying causes of transformation from MGUS and SMM to multiple myeloma. The study will enroll patients with a diagnosis of MGUS or SMM with the intention of tracking the progression of the disease. From what I understand, patients go for an initial visit, then after 6 months, then annually for up to five years or until the myeloma becomes active. The actual clinical trial listing can be found here.

From what I have read on various myeloma forums, enrolling in the study gives patients a thorough workup by a team of myeloma specialists. In my case, this could be a way to get a "free" second opinion. Plus, of course, to some degree contribute to society assuming that this study will help researchers better understand myeloma and it's progression. Participants even get reimbursed for some travel expenses.

After learning about this study, I emailed the two addresses listed  on the website. I heard back from a research nurse who said that I should fax my records and then they would get back to me. Then, a few days later I got an email from the lead doctor - Dr. L - who put me in touch with another doctor named Dr. MR.

Dr. MR actually set up a time to call me and speak on the phone which was really nice. He was able to answer some of my questions and give me more information about the Natural History Study. He did say that their philosphy is different than Dana-Farber and going to the NIH/NCI for a second opinion would definitely be a good choice for me. Not entirely sure how their philosophies differ, but whatever. He said getting a different second opinion would be more beneficial to me than getting a second opinion that is the same, which would probably be what I would get from Mayo. Hmmm. I guess that makes sense. Although, having conflicting opinions would be a little bit more confusing! Getting a second opinion that is the same would be somewhat reassuring. Lord knows I need some reassurance. :)

So far everyone at the NCI/NIH has been very nice and helpful. I told Dr. MR that I was getting a second biopsy in December. He thought I should go to the NIC for my second biopsy because I would get all this additional testing that I haven't had done. I said I would think about it, but then later emailed him and said that I was going to stick with my follow-up biopsy at Dana and I hoped to go down for the Natural History Study soon after. THEN, I would have the results from the two biopsies at Dana as well as Dr. PR's opinion of my situation to compare with the doctors at the NCI. Going to the to Maryland to enroll in this study would be a good chance to get a second opinion AND like previously stated, contribute to science. :)  Right? Right.

I am hoping to go to the NCI in January or February. Nailing down an actual day and time has been a little bit more difficult. According to Dr. MR I am "on his list" to come in January or February but he will be in touch as the dates get closer. Hmmm.

Still go to the Mayo Clinic for a *gasp* third opinion? We'll see.

Freaking Out & Second Opinions...

After my biopsy in July yielded higher results than we expected (10-15% plasma cells), my appointments at Dana-Farber have consistented of me freaking out and asking my doctor 1298374 questions. It is interesting though... in all my progress notes I am described as having "excellent morale" - if he only knew what was going on in my mind! Thankfully, my doctor has been very kind, compassionate, and extremely reassuring...well...mostly reassuring!

Despite waiting hours and hours (and hours :)) to see him, my appointments are always worth the wait. I never feel rushed and my doctor patiently answers all my questions. I'm sure a lot of oncologists deal with emotional patients all the time; people in WAY worse situations than mine. It's so important for them to have caring and calming (!!!) personalities. At least, those are traits I like to see in my doctors.

At my last appointment, my doctor said he always supports second opinions. Someone my age with MGUS is pretty rare. In addition, decisions around family planning are not something most myeloma patients are regularly faced with since the majority are beyond childbearing years and/or have already established their families.

He said that he would consult with his "boys" at the Mayo Clinic (he then quickly added "and girls" - I guess in an attempt to not sound sexist! Maybe he should just stick with "collegues." :)) to see if they thought anything radically different about my case. He said that if they did, I might consider going there for a second opinion. He joked that my husband and I would probably be better off flying to Europe for a vacation - it would take less time to fly to Europe from Boston than to travel to Rochester -  and Europe would probably be much more exciting! No offense to anyone living in Minnesota or that area, but from what I have heard there isn't much out there! However, I cannnot speak from experience and I'm sure it's very lovely. No hate mail please!

So... second opinion? Eh. Probably would be a good idea.

Celebrating my LAST birthday :)

So, I celebrated my birthday this past Thursday. I have decided that it will be my last birthday celebration. Ever.

Having an October birthday has always made me "older" than my various groups of friends in school and college. I was always one of the first to have all of those "big" birthdays... 16, 18, 21...
And really, 21 was the last exciting milestone!

As you might have noticed, I took out my exact age in the "About Me" section. It was just too painful to type. Blog readers well adept in mathematical calculations can easily uncover the mystery that is my age, though. Oh well. :)

Anyway, I will celebrate the anniversary of my 29th birthday next year and for many years to come...

A "twenty-something" I will remain, forever! People may say things like:

 

 

Yeah, yeah, yeah.. Of course, I am happy to turn another year older! :) Sorry for the melodrama.  I did get carded when I ordered my coconut raspberry margarita when we went out for my birthday. I may be 29, but I will always look like I'm 12! 

Schools in MA are number one!

Okay, anyone else watching the presidential debates?

Schools in Massachusetts are ranked number one in the nation! Woohooo!

Since I am, in fact, a teacher in said state, I am having a very proud teacher moment right now.

You're welcome. :)

Understanding Pre-Myeloma (MGUS)

Since internet research has literally become my second job, I came across this video on the website Patient Power. It is an interview with Dr. James Berenson about MGUS (Monoclonal Gammopathy of Undetermined Significance).

My technological abilities are clearly lacking and I can't figure out how to embed the video into this post.

But, if you are interested, you can find the full-length video here!

Some important facts that I noted:


MGUS is much more common than myeloma. People with MGUS have the same m-protein as patients with multiple myeloma but in smaller quantities. However, they don't have holes in their bones, anemia, high calcium, and kidney failure.

MGUS is associated with bone loss and patients have a higher risk of fractures and blood clots. Measuring bone density on a regular basis would be appropriate in MGUS patients. Also, after looking at bone density measurements possibly consider Zometa infusions every 6 months. 

Some studies suggest that patients also have a higher risk of peripheral neuropathy - numbness or tingling in feet and hands.

Given that MGUS, like myeloma, is a disease of the elderly, the older you get the higher the risk. Most MGUS patients never develop myeloma - they don't live long enough to develop it. But, if you are a 40 year old with MGUS you've got a lot of years to get there and it's a little more worrisome.


Most of this I knew. However, I've never had my bone density checked! Maybe because I'm not elderly and hopefully my bones are all intact?

Add that to my list of 239843 questions for my appointment in December.

I do have pins and needles in my hands and feet from time to time. My doctor suggested cocoa butter as an emollient. Not sure it's really doing anything except making me smell like chocolate! 

Okay. If it is worrisome to be diagnosed with MGUS at 40...umm...what if you are a 20 something year old with MGUS? Ahem, I was diagnosed when I was 25!

BUT, according to this video (and I did know this), I am considered "low risk" because my protein is IGG, my m-spike is less than 1.5, and my free-light ratio is normal.

Good right? Right?? Phew.