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. :)