Friday, December 28, 2012

A Christmas Miracle! Part Two: Santa reads my blog.

Christmas miracle number two: Apparently, Santa reads my blog because...

Guess what I got for Christmas?

I cried. :)
Hennessy is 8 weeks old and the cutest little fuzzball you have ever seen. I named him Hennessy after Hennessy's Bar and Grill in Boston where J and I first met back in 2007. Aw.
A little bit of mischief at the birth of Christ. Sorry, Mary.

He loves Christmas, just like me!
Exercise is very important, too. :)

Thursday, December 27, 2012

A Christmas Miracle! Part One: the phone call...

A Christmas Miracle occurred on Monday. Well, maybe not a miracle, but a faint glimmer of hope was granted - something I have prayed for incessantly during the last 5 or so months.

As I wrote in a previous blog post, my biopsy results were still not below 10% and having a baby myself wasn't looking like the best viable option. At the end of my appointment, Dr. R said that he would consult with some of his colleagues at the Mayo Clinic and would contact me sometime before Christmas to share the information.

At 3:00PM on Monday as we were headed to the early Christmas Eve service at our church, I came to the realization that I was not going to hear from Dr. R.

In my mind I rationalized the following three reasons as to why I had not received this very anticipated phone call:

1. Maybe the Mayo doctors Dr. R was going to consult with were on vacation for Christmas and he hadn't been able to get in touch with them.

2. Maybe the information the doctors had shared was not favorable for women with SMM/MGUS who wanted to have babies and he didn't want to give me bad news right before Christmas.

3. Maybe he simply forgot and/or didn't have time to call me.

Reason #3 I highly doubted. But, since it was getting later and later on Christmas Eve day I couldn't quite be sure.

The Christmas Eve service was nice. I love, love, love when everyone holds their lit candles and we sing 'Silent Night'. And, Stephen Gostowski (kicker for the Patriots!) was sitting with his family right in front of us! Very exciting for my husband. Luckily for me, he played it cool. :)

Around 4:00PM when the service ended I realized I had a voicemail but no missed call (patchy cell service, apparently). Of course, it was from Dr. R. He left his pager number and he said that he had gotten great feedback from his colleagues and I could either call him back if I got the message or speak with him later in the week. I quickly called the beeper service and they said that they would page him.

After I made the call we went right to my aunt's Christmas Eve party. I anxiously downed my first Red Rudolph martini and after about a half hour or so I figured he wouldn't call me back. But, I mean, he has a family too, it's Christmas Eve, and it was after 5:00PM! No hard feelings. 

Then, suddenly my phone started ringing; it was a Boston area number that I didn't recognize! Woooohooo. I answered and Dr. R said that he had just gotten home. I think he was calling from his land line, ha.

We chatted for about 10 minutes. His colleagues at Mayo agreed that his concerns regarding pregnancy were well placed and it was very important that we did our "due diligence"  in terms of the biopsies, MRI, etc. Dr. R said is is going to order some additional tests on my biopsy to see if the cells express the estrogen receptor. If they stain positive, then adoption and surrogacy would probably be a better option for me. If they are negative, it will really be a matter of weighing the risk vs. benefit, because, in his words, "We really don't know for sure."

He said the doctors shared some "anecdotal" cases at Mayo where patients with "smoldering disease" have, "been okay and had successful pregnancies." Not entirely sure what "okay" means. If I were to become pregnant I would be monitored very, very carefully. He said that my husband and I will have to weigh the benefit vs. risk (benefit = having a baby, risk = disease progression) and make a decision. He said that his primary duty is to my welfare which is why pregnancy is such a concern, but the prognosis of myeloma is improving all the time. He said the disease may worsen but even if things do worsen I could potentially still have 15-20 years of survival after having a baby. He said that 10 years ago people would have been much more cautious. Pending the additional plasma cell testing, and praying that it is negative he said, "We can try with our eyes wide open and see what happens." Still not 100% sure how I feel about everything.

Hope everyone had a great Christmas! :)

Sunday, December 23, 2012

Cat needed.

It's amazing the random conversations that occur that normally wouldn't matter or lay heavily on your heart unless you are going through some  significant, life-changing, emotional turmoil. :)

Conversation I had the day after my most recent appointment.

Me vs. 7 year old student:

Mrs. M do you have a son?


Do you have a daughter?


Do you have a pet?


Mrs. M you don't even have a pet???

Hah. Okay. Really need to get a cat. :)

Wednesday, December 19, 2012

Mayo Consult, ID Specialist, and 6 more weeks...

I went into my appointment yesterday very optimistic. Unfortunately, Dr. R did not tell me what I wanted to hear in terms of pregnancy. That being said, this blog post has been written and revised and written and revised several times. I hope that it does not come off as negative, whiney, or melodramatic. :)

So. I met with Dr. R to review my results yesterday afternoon. Afternoon is a relative term. My appointment was scheduled for 4:45 and I didn't actually see him until 7:00! Whoa. What's up, triple bookings? However, over the last 3 years having appointments with Dr. R, this is something I have grown accustomed to. Annoying, but always worth the wait. Good thing I brought papers to correct, snacks, AND my husband, mom, and sister. Definitely helped pass the time. :)

At the beginning of the appointment, I shared with Dr. R the leg pain that I have been experiencing since my biopsy in July. He confirmed that a nerve must have been damaged but eventually it should heal. I also shared, yet again, that I experience frequent night sweats and fevers.

The discussion continued on to review the results of my MRI, blood work, and biopsy.

MRI is negative. Great.

M-spike is .42 up a little bit from September when it was .39. Still very low, but consistently moving upward over the last 3 years. Not so great.

Free light chain levels are abnormally low, but the ratio is normal. Great.

Blood work is all within normal range. 24 hour urine has no monoclonal protein. Great, great.

Biopsy results continue to be concerning. The full results can be viewed here: Biopsy Results - December. Not great.

Just to review: in July my biopsy showed 10-15% plasma cells (6-8% in the intertrabecular space). My biopsy from last week showed 10% plasma cells (5% in the intertrabecular space).

Good news: 10% = lower than my July biopsy
Not so good news: 10% = still technically meets the criteria for smoldering myeloma, not MGUS

My aspirate in July was 3% including atypical forms. My aspirate last week was 1% with rare binucleated forms.

Good news: 1% = lower than my July aspirate
Not so good news: rare binucleated forms = bad plasma cells

In reviewing my biopsy reports and seeing....



....all I have to say is that the pathologists need to simmer down. Chill out with the caps lock. We get it.

Anyway, Dr. R was very reassuring that the majority of these results are very good, particularly the negative MRI, low m-spike, FLC ratio is normal,  PET/CT from August was negative, and  most all other blood work is in the normal range. The majority of my prognostic indicators are considered low-risk.

The main areas of concern are that the plasma cells are in rare binucleated forms and that the 10% plasma cells in the biopsy technically classifies me as smoldering myeloma not MGUS.  I asked him, "So am I MGUS or smoldering?" He of course said something along the lines of... "Well you have a plasma cell dyscrasia and everything points to MGUS except for the biopsy."


My real issue (heh, who knows what my real issue is, if you know me, you know I have many :)) is around family planning. Dr. R described my situation being similar to a woman who was in the early stages of breast cancer. Doctors would advise a woman with that diagnosis NOT to become pregnant due to the fact that pregnancy would progress the cancer.

Similarly, myeloma cells have estrogen receptors and there is risk that the same thing could happen - the pregnancy hormones would be feeding the cells and causing the myeloma to progress. Some of the very drugs that TREAT myeloma (Revlimid, Thalomide) are absolutely detrimental to babies growth. These drugs are forbidden during pregnancy. Dr. R said that he has had two female patients who presented with myeloma at the end stages of their pregnancies. Obviously, there is no way to know what their MGUS or SMM numbers were before their pregnancies. This is a little repetitive since I wrote a post regarding Pregnancy & Myeloma but this is where I'm at. The problem is my plasma cells are not below 10% and really he originally thought that I would be below 5% which would give me the green light. No such luck. He said that we might need to be "creative" in terms of having a family - basically our best options would be surrogacy or adoption.

We talked a little bit about the NCI and how I spoke with Dr. MR regarding the Natural History Study of MGUS & SMM and said that he said they have a very different philosophy from Dana-Farber. Dr. R agreed and said that the doctors at the NCI tend to be a lot more aggressive in their treatment of myeloma. He also mentioned that if/when I go there for the The Natural History Study they might even recommend CRD (carfilzomib, revlimid, dexamethasone) for smoldering myeloma. Dr. R said that Dana-Farber tends to be more conservative and first and foremost their philosophy as doctors is to, "Do no harm." I am hoping to hold off treatment for as long as possible so I think at this time I would definitely agree with this, "First, do no harm." philosophy.

Dr. R is going to consult with Dr. RK and Dr. MG at the Mayo Clinic regarding my profile. He said that he would call me sometime before Christmas and let me know what the doctors at Mayo said. Merry Christmas to me! He also said that I should go back to see him in 6 weeks to review this information face to face and to check my blood levels again. In addition, he recommended I see an infectious disease specialist prior to my appointment to rule out anything else that might be causing my fevers and night sweats.

All of these results are really good news and overall I am doing very well within the context of this disease. I keep trying to tell myself that.

This is good news. This is good news. This is good news.

As heartbroken as I am regarding the implications for me in terms of pregnancy, the good news is what I am trying to focus on. Dr. R said that in 10 or so years if/when I progress to symptomatic multiple myeloma there will be so many more treatment options than what there are now. There will also be so many more published research studies than there are now. Doctors are definitely headed toward what he called a "functional cure." Great news. But, at this time however, if I were to become pregnant and the myeloma were to become active he said, "We could buy you maybe 10-15 years, but not 40. Right now myeloma is not curable." 

Ugh. A lot to think about over the next 6 weeks. My mom, sister, husband, and I discussed everything over beers and french fries after the appointment. Very bad for my Permanent Health Kick, but very much needed.


I must mention, really, the BEST news I got yesterday is: I DO NOT have to do a 24 hour urine collection prior to my next appointment! Fabulous.

Tuesday, December 18, 2012

Bone Marrow Biopsy Results - December

Here they are...

Raw, with no commentary from me. Heh.

Pathologist:   ***************, M.D.

Clinical History: 29 year old female with history of MGUS
Clinical Diagnosis: MGUS



Differential count:

Cellularity : OK/Increased. Spicules present
Megakaryocytes : Present
Blasts : 1%
Promyelocytes : -
Myeloid : 62%
Erythroid : 25%
Lymphocytes : 11%
Plasma cells : 1%; rare binucleate forms
Others : -; Touch prep also examined
M:E ratio : 2.4:1


Maturing trilineage hematopoiesis with 1% plasma cells.
See biopsy, flow cytometry and cytogenetics for definitive evaluation of plasma
cell population.

 Final Diagnosis by  *********** M.D., Electronically signed on Friday
December 14, 2012 at 09:27:17AM

Resident: **************, M.D., Ph.D.
Pathologist:   *************, M.D.

Clinical History: 29 year-old woman with history of MGUS
Clinical Diagnosis: None given.



Gating is by CD38 and CD138 on plasma cells with <1% of the total cells in the

T cell % Positive B cell % Positive Myeloid/Others % Positive
CD3 CD19 1 CD45
CD5 CD38+CD138+ 74 CD34
CD3+CD4+ CD19+CD5+ CD14
CD3+CD8+ CD38+CD56+ HLA-DR
CD3+CD7+ CD138+CD56+ 2 CD33
CD2 CD19+CD11c+ CD13
CD7 CD22 CD11b
CD19+CD38+ CD117
NK cell CD19+Kappa+ TdT
CD16 CD19+Lambda+ CD10
CD56 9 CytoKappa+ 26 CD15
CD57 CytoLambda+ 78 CD64
CD3+94+ CD19+CD52+ Glycophorin

Flow cytometric analysis of this bone marrow aspirate reveals a minute
population of plasma cells that is positive for CD38 and CD138, negative for
CD56, and shows apparent cytoplasmic lambda light chain staining, HIGHLY
morphologic findings (BS-12-56932) is required for further evaluation.

These tests were developed and their performance characteristics determined by
the Hematology Laboratory, Brigham and Women's Hospital. They have not been
cleared or approved by the U.S. Food and Drug Administration. The FDA has
determined that such clearance or approval is not necessary.

Final Diagnosis by  *************** M.D., Electronically signed on
Wednesday December 12, 2012 at 12:50:01PM

Accession Number:  ********                     Report Status: Final
Type: Surgical Pathology
Specimen Type: Bone marrow biopsy
Procedure Date: 12/10/2012
Ordering Provider:  *************M.D.

Resident: **************, M.D., Ph.D.
Pathologist:   **********, M.D., Ph.D.




Hemorrhagic moderately hypercellular marrow (20% fat/80% cellular).
Approximately 10% of the cellularity (5% of intertrabecular space) is comprised
of plasma cells that occur singly and in small clusters.
Immunoperoxidase and in-situ hybridization studies performed on paraffin
sections reveal that the CD138-positive plasma cells express excess lambda
light chain over kappa light chains.
Of the remaining cellularity:
Erythroid elements are present in normal proportion and exhibit maturation.
Myeloid elements are present in normal proportion, exhibit maturation and
include increased number of early and eosinophilic forms.
Blasts comprise less than 5% of the marrow cellularity.
Bone trabeculae exhibit focal osteoblastic and focal osteoclastic activity.
Giemsa stains were examined.
The aspirate smear findings are of a cellular, spicular smear showing maturing
trilineage hematopoiesis with mildly increased number of plasma cells.
Blasts are not increased.

Bone Marrow aspirate reading at DFCI (BL**********):
Differential count:
Cellularity : OK/Increased. Spicules present
Megakaryocytes : Present
Blasts : 1%
Promyelocytes : -
Myeloid : 62%
Erythroid : 25%
Lymphocytes : 11%
Plasma cells : 1%; rare binucleate forms
Others : -; Touch prep also examined
M:E ratio : 2.4:1
Maturing trilineage hematopoiesis with 1% plasma cells.
Flow cytometric analysis performed at BWH (*********, 12/10/2012) showed a
minute population of plasma cells that is positive for CD38 and CD138, negative
for CD56, and shows apparent cytoplasmic lambda light chain staining, HIGHLY
The overall findings are a moderately hypercellular marrow showing maturing
trilineage hematopoiesis and 10% plasma cells with excess lambda light chain;
focal osteoclastic activity is present. Although definitive light chain
restriction is not observed by in-situ hybridizations studies, in light of IgG
lambda monoclonal gammopathy, the overall findings are MOST CONSISTENT WITH
INVOLVEMENT BY A PLASMA CELL NEOPLASM. Correlation with clinical, laboratory,
cytogenetic, and radiologic findings is recommended for further classification.

(Clinical: 29 year-old female with history of monoclonal gammopathy of
undetermined significance)

History: 29 year-old female with history of monoclonal gammopathy of
undetermined significance.
Operation: Bone marrow biopsy.

A/1. Bone marrow biopsy.

The specimen, labeled with the patient's name, unit number and "PRI", consists
of a tan core of tissue, measuring 1.3 cm in length x 0.2 cm in diameter. It
is fixed in Bouin's solution and briefly decalcified in RapidCal-Immuno for 15
minutes. A Wright-Giemsa stained bone marrow aspirate smear is received.

Micro A1: Bone marrow biopsy, ESS, 1 frag, 1 cass.


Dictated by: **********

The immunoperoxidase, immunofluorescence and in-situ hybridization tests
performed at Brigham and Women's Hospital were developed and their performance
characteristics determined by the Immunohistochemistry Laboratories in the
Department of Pathology at BWH. They have not been cleared or approved by the
U.S. Food and Drug Administration (FDA). The FDA has determined that such
clearance or approval is not necessary.

By his/her signature below, the senior physician certifies that he/she
personally conducted a microscopic examination ("gross only" exam if so stated)
of the described specimen(s) and rendered or confirmed the diagnosis(es)
related thereto.

Final Diagnosis by  ************M.D., Ph.D., Electronically signed on
Friday December 14, 2012 at 02:58:32PM

I will say I am happy to see these numbers are a bit lower than in July.

However, there is some language that is different than my other biopsy results such as rare binucleate forms and focal osteoblastic and focal osteoclastic activity.

I meet with Dr. R this afternoon so we'll see. :)

Saturday, December 15, 2012

MRI & Bulging Disc

I have some very exciting results to report.

MRI is negative! Woohoo. Check that off the list.


Date/Time: 12/10/2012 11:40
INDICATION: Multiple myeloma with back pain. Additional history
from longitudinal medical record indicates that the patient has
MGUS. Pain radiating down the back of the left leg has bothered
her since a bone marrow biopsy in July 2012.

COMPARISON STUDY: PET CT of 8/23/2012 and 12/30/2009..

TECHNIQUE: Sagittal and axial T1and T2 weighted images of the
lumbar spine were performed. Sagittal STIR images were performed.


Alignment: Vertebral body heights and alignment are maintained..

Marrow: Free from infiltrating disease.

Conus: Normal signal and contour . Terminates at L1-L2.

T12-L1: Negative for significant abnormality.

L1-L2: Negative for significant abnormality.

L2-L3: Negative for significant abnormality.

L3-L4: Negative for significant abnormality.

L4-L5: Negative for significant abnormality.

L5-S1: Mild broad-based posterior disc bulge without significant
central spinal canal stenosis or neural foraminal narrowing..

IMPRESSION: No evidence of infiltrative disease in the lumbar

INCIDENTAL FINDINGS: Mild posterior disc bulge at L5-S1 without
significant stenosis.

This "incidental" finding  is extremely strange to me.

I have a mild posterior disc bulge (L5-S1). How the heck did that happen?

Ever since my biopsy in July I have had pain down the back of my left leg mostly when sitting and bending at the waist. I just assumed it was nerve damage since the onset of pain was during and right after the biopsy.

I don't really have lower back pain. Well, I maybe I do? I thought the pain was all biopsy related. Maybe I've had this bulged disc for a while and didn't know it? Maybe my crazy, almost daily, classes at the gym caused it? Maybe my leg pain is a combination of nerve damage from the biopsy and this bulging disc? Who knows. Now I feel like I have lower back pain because I know there is something technically wrong with it. Ha. Such a hypochondriac.

The shootings at the elementary school in Connecticut really hit close to home for me yesterday as I am second grade teacher in Massachusetts. This type of tragic event has been repeated too many times at schools, malls, and even at a movie theater here in the United States. At my school we practice lockdown drills and the outside doors are locked with a security system. But like in Connecticut, sometimes these actions are clearly not enough. Obviously, access to guns is the real issue. Lack of values and morals is the issue. Movies, TV shows, and video games glorify violence. I am thankful for my students and the privilege to work with them every day. I can’t even imagine what the families and surviving children and staff members in CT are going through.  My thoughts and prayers are with them.

Life is precious - I am so thankful for a negative MRI, my family, and friends. I am very blessed.

Tuesday, December 11, 2012

Blood work, MRI, and bone marrow biopsy - DONE!

J and I actually had a pretty good day yesterday at Dana-Farber. I mean, as far as long days at a hospital go, it was about as good as it could be. :)

We left our house REALLY early in an attempt to avoid rush hour traffic headed into Boston and as a result we had a lot of time to kill when we arrived. Dana-Farber has a "concierge" service where you can borrow books, magazines, and ipads. I have never used this service before but since we were going to be there literally all day and were very early we figured it might be cool to borrow an ipad. Took us a little while to figure out how to work it since we are both a bit technologically challenged. We both still have flip cell phones that only make calls and send texts. Sad and pathetic, but true. Once we got the hang of using the ipad it was a good distraction throughout the day.

Around 9:30 I dropped off my 24 hour urine collection jugs. I transported them this time in a healthy Whole Foods bag which will hopefully result in very healthy pee. When I had my blood drawn and the nurse was printing out all the labels for the tubes of blood she asked me, "Is this normal for you? All these different blood tests?" Hah. Unfortunately, yes.

AND THEN, she left the line in my arm. I tried to explain to her that I was not getting contrast for my MRI but she said she wanted to leave it in, "Just in case..."

Here we go. Back to the contrast controversy. Seriously!

After my blood work was the MRI. I had to fill out a questionnaire (very similar to the questions I was asked during the pre-screening phone call) and then waited for a while. I started obsessively checking my blood work results on the Patient Gateway website. Crazy how quickly some of the tests are processed.

The MRI wasn't bad. As soon as I was called in the radiologist confirmed that I would be having the MRI without contrast and they would take the line out when the test was finished. Thank God. I had to change into scrub pants and this weird wrap-around gown. I laid down on the MRI table and they put a heated blanket on me (ahhhh....I love being warm) and ear plugs for my ears. I was also given this sqeezey ball thing to signal the radiologist in case I needed a break.

Initially, going into the tube I got a little freaked out. IT'S SMALL. Way smaller than a PET/CT tube. My face was like 3 inches from the top of the tube. When the test started I just closed my eyes and almost fell asleep. Thank you, Ativan. My back also got really warm which I enjoyed and also made me sleepy. The test is definitely super noisy but the earplugs helped.

After the MRI was complete J and I headed to the cafeteria. We had a little bit of time before my bone marrow biopsy and aspiration. I continued to check my blood work online, ate a little fruit, and then apparently, according to J, just sort of stared off into space for a while. Again, thank you, Ativan. :)

Next, was my bone marrow biopsy and aspiration.

I was REALLY nervous since I had such a terrible experience during my first biopsy in July with the crazy cramping and leg spasming. I described what had happened to the PA and mentioned I still had sciatic pain down the back of my left leg. He was a little horrified, confirmed that the other PA must have hit a nerve, and said that hopefully this experience would be very different. He was also going to preform the biopsy and aspiration on the right side this time. I think in an attempt to not totally throw the other PA under the bus he said maybe my right side will have less nerves. Sure....

Anyway, this biopsy was definitely a completely different experience than last time. It was a piece of cake! Well, not really, but it was a heck of a lot less painful. The PA told me exactly what was happening and had me breathe in deeply then breathe out really hard as he was doing the aspirations and biopsy. Now, of course it was still painful and I wouldn't want to have one everyday, but it was definitely tolerable. Nothing compared to my last biopsy. The bone piece looked completely different this time. Almost curly and in fragments, not like the 2 inch long uncooked spaghetti piece in July. I hope the piece was enough to get a good reading!

After my last biopsy I was out of commission for like a week. And down the back of  my left leg still hurts to this day. This time, 30ish hours after my second biopsy, I just got home from a spin class! What a difference a good PA makes!

But let's be real, I'm exhausted and really probably shouldn't have gone to class. But the Permanent Health Kick must continue. :)

Saturday, December 8, 2012

MRI: with contrast vs. without contrast

Ever since becoming fairly myeloma obsessed after my biopsy results in July, there is one thing that has become very apparent to me: people with MGUS, smoldering myeloma, and multiple myeloma are extremely compassionate, kind, and most importantly, KNOWLEDGEABLE in regards to this disease.

Around August/September I started joining different myeloma groups - email lists, facebook support groups etc. I posted a few questions and always got a lot of answers and support. I have really learned so much by reading other patients' situations, questions, and the responses.

After starting this blog I also received several comments and suggestions that have been very helpful and informative. After writing the post MRI & Metal Removal I got a comment from an individual with MGUS warning me that the MRI contrast agent gadolinium can promote myeloma cell growth. He also left links to Margaret's blog regarding the topic:

Margaret's Blog - The gadolinium used in MRIs makes myeloma cells proliferate and Important update on the MRI contrast agent gadolinium


Like I wrote in my previous blog post, I was told during my pre-screening phone call that I would have the contrast injected part way through the MRI. Seriously, without this comment, I would have not been aware the contrast could possibly be dangerous to my health.

After reading the comment and links, mildly panicked, I call the MRI reception desk because I assume there must be some sort of mix-up. I ask, what is the name of the contrast agent you use during MRIs? Assuming, stupidly, that they MUST use something different than gadolinium.

Nope. Gadolinium is the contrast agent used at Dana-Farber. (Although, I have now heard that there are different types of gadolinium and I'm not sure which kind is used there.)

I call my mom and ask her to check with her very close friend who has full-blown multiple myeloma who is also a patient at DFCI. We find out he has had some MRIs with contrast and some entirely without.

I send an email to one of the email lists I am a member of. Several of the very kind, knowledgeable members respond and shared these links: Is the use of gadolinium in MRI a necessary part of the imaging test and is it safe? and GADOLINIUM CONTAINING CONTRAST AGENT PROMOTES MULTIPLE MYELOMA CELL GROWTH: IMPLICATION FOR CLINICAL USE OF MRI IN MYELOMA

So. Sounds like I really shouldn't have the MRI with contrast due to kidney damage risk - Nephrogenic Systemic Fibrosis (although, my kidneys are fine - knock on wood) and possibility of promotion of myeloma cell growth . So, why am I???

I call the MRI reception desk...again. The receptionist I speak with says that every patients' blood is tested one hour before the MRI to check kidney and liver function and after those results the radiologist decides whether or not to use the contrast. Kidney and liver function results for me have always been mostly normal. I voice my concerns re: gadolinium and myeloma cell growth and my diagnosis of MGUS/SMM. The receptionist puts me on hold to speak with the radiologist. Receptionist gets back on the phone and says, "Actually, you are checked off to have the MRI without contrast."

Okay. Seriously? All this angst and I'm not even having the contrast anyway?

I ask, "Well, then why was a told two days ago that I would have the test with contrast?" The receptionist says that after my responses to the pre-screening questionnaire were reviewed, in particular my diagnosis, the radiologist decided that the MRI would be without contrast.

Okay, I guess that makes sense. But, my question now is, did my actual doctor intend for me to have the MRI without contrast, or with and without contrast? Did the radiologist change the MRI to no contrast because I called and voiced my concerns? Who is making the decisions here?

So, I send an email to Dr. R. Which, honestly, is what I should have done from the beginning. I wasn't sure if I would hear from him though because this weekend is the 2012 ASH Meeting and Exposition and I figured he would be busy in Atlanta. However, he always responds very quickly to email and he actually wrote me back right away. He said that getting the MRI without contrast is fine and it shouldn't be needed as a first step.

So that's good, right? Of course now I'm over thinking things and am worried some data could possibly be missed if I don't have the contrast. Ugh.

Anyway. As far as I know, on Monday, my MRI will be without contrast. Phew. :)

Thursday, December 6, 2012

MRI & Metal Removal

I received my MRI L-Spine "pre-screening" phone call yesterday. This phone call was very similar to the PET/CT pre-screening and about a million questions were asked. Just to name a few...

Do you get claustrophobic?
Do you weigh over 350 pounds?
Do you have any metal implanted in  your body?
Do you have multiple myeloma? (not sure if that was a trick question or not)

The nurse gave me some more information about the test which was very helpful because I've never had an MRI before.

Good news: I do not have to fast before the test like the PET/CT (score!) and there's no radioactive tracer so I don't have to "rest" by myself for an hour while it settles like the PET/CT (score!).

Bad news: I have to wear a johnny during the scan (yuck) and when I get my blood work done an hour before the MRI they are going to insert a "line" (yuck) so part way through the MRI they can inject the "contrast". The only other time I've had a "line" (picc line? I don't know what it's really called) was when I got admitted to the hospital back in May for what I now refer to as the, "Crazy Skin Infection" and was getting mega doses of vancomycin. Not a good time. But that is another story for another day. Anyway, when I had the line while I was in the hospital it totally gave me the heebee jeebees and I'm not looking forward to having another. Oh well, at least it will only be in my arm for a couple hours.

After I got off the phone I realized I had answered, "No" to the Do you have any metal implanted in your body? question and I actually DO have metal in my body. Whoops.

When I got my braces off about 15 years ago or so the orthodontist cemented a wire across the inside of my lower teeth so they wouldn't shift. I never got the wire removed - it's not visible when I smile or talk. However, one of my lower teeth shifted anyway. Nice. Every time I go to the dentist the hygienist asks me when I'm getting the wire removed - there is usually plaque build up because it's hard to brush around.

Anyway, I was a little worried this metal wire could be an issue so I called Dana-Farber back, left a message, and played phone tag a couple times. During this phone tag before I officially spoke to someone at DF,  I decided to be proactive and contact my old orthodontist's office.  My orthodontist actually retired several years ago but the secretary said I could go in this Saturday to FINALLY get the wire removed. After I booked the appointment to have it removed I heard back from Dana and the nurse said that I actually would be okay to have an MRI with the wire in my mouth because I am just getting an MRI of my spine and not my head. Having metal in area of your body where you are getting an MRI distorts the images apparently. Oh well, still getting the wire removed. My dental hygienist will be thrilled.

Plus, if I ever need an MRI of my head I'll be good to go. Super.

Monday, December 3, 2012

Bone Marrow Biopsy & Aspiration: Ouch

Fourth and Final Test: Bone Marrow Biopsy and Aspiration

If I could give an award to each of the tests I have had they would be.....

Blood Test -- quickest
24 Urine -- most annoying and grossest
PET/CT -- longest
Skeletal Survey -- coolest pictures

and finally....

Bone Marrow Biopsy --  most painful

When I was diagnosed with MGUS in 2009 I did not have a bone marrow biopsy. I was told the test was not necessary at the time because my m-spike was so low and I was categorized as low risk. If I could go back, I would have had the test when I was first diagnosed. Despite the pain, I wish I had a baseline and knew if the percentage of plasma cells were the same over the last three years or if they have increased.

My first biopsy and aspiration was this past July. When my doctor said I should have this procedure to be "super careful" before getting pregnant he described the procedure as being very quick - just, "In....and out." He pushed his finger onto my lower back as he said this. A very small needle is used for an aspiration, and he said the procedure is painful, but only for a few seconds. Ugh, I hate needles. But, my thoughts were that this would not be a huge deal. "In...and out" - I could certainly handle that!

I told my family,  Yeah it's  just a simple aspiration - in...and out! A few members of my family mentioned that some people get sedated when they have bone marrow biopsies. I said, No way, I'm just having an aspiration. The procedure is simple, quick, just a very small needle, in and out!

Okay. I love my doctor. I am actually very thankful that I was told it was just, "In...and out" and I didn't google "bone marrow biopsy and aspiration" before I had the procedure. Because honestly, it was a heck of a lot more than, "In....and out!"

This is a real, "medically-technical" description of a Bone Marrow Biopsy and Aspiration in case you are interested.

Here is my biopsy story. Which is really not at all a "medically-technical" description.

One sunny July day, a lab tech takes my vitals before my bone marrow biopsy. My blood pressure is a little high (for me that is, it was like 110/75). I attribute this to be a little bit anxious.

Next. PA comes in looks and me and says, "So, your nervous?"

Ahem. Is that a statement or a question? Well. I am. But should I be? Now, I'm really nervous.  PA describes the procedure. Turns out I am having an aspiration AND biopsy. Whoa, whoa whoa, what happened to the "in...and out!" simple aspiration? PA explains that she only has to go in "one more time" for the biopsy (piece of the bone). Wait, what? One MORE time? What happened to, "in....and out!"???

{Little did I know this was just the start of the, "Wait...what? I thought this was no big deal!" mantra that I would be repeating for the next several weeks.}

I sign a consent form. My mind is racing.

I am asked to undo my pants and lay flat down on my stomach on this little bed. Heh. Luckily, there is a pillow. PA makes small talk - she apparently hates kids and thinks I am crazy to want to get pregnant when I teach children all day. J comes over and holds my hand. Aww.

From this point on I can't really "see" what is happening. But I do feel it. J later filled me in on what the procedure entailed.

It was no joke.

The PA injects lidocaine into my skin and asks, can you feel that? I can't after the initial burning.

Next, more is injected, this time down the the bone.

A small incision is made to make space for a special needle. Later, J said it looked like a straw with a triangle on top. Very technical description.

This is what the Jamshidi needle actually looks like. The "triangle" part is used rotate the needle into the skin down to the bone.

Sidenote: I love how the guy in this drawing is totally chillin' with his chin on his hands. Like he is relaxing on a towel at the beach staring off into the ocean.

For the record, I was NOT chillin'. I was laying with my head to the side CLUTCHING J's hand. And luckily, I got to keep my shirt on.

When the PA started the aspiration it was really, really painful. I had CRAZY cramping/lightning pain down the back of my left leg into my foot once she started drawing out the marrow. I actually still (it's December, biopsy was in July) have sciatic pain down the back of my left leg (mostly when I am sitting) so I think she must have hit a nerve. I kicked off my flip flops at one point because the pain was so intense and my legs were totally spasming.

During this intense pain the lab tech guy kept leaning in close to my face saying loudly, "ELIZABETH, WHAT ARE YOU FEEEEELING?"

Um. I don't know, pain? Seriously.

In addition to the leg pain/cramping/spasming (from what I have read, I don't think most people have this type of pain if the needle is positioned correctly) I felt a deep, deep, almost gnawing pain, like something was being pulled from my core.

Which, ironically, was what was happening.

At one point part way through the aspirations I got really nauseous (nauseated?). This crazy wave of nausea came over me out of nowhere and I was terrified I was going to throw up. Luckily, they gave me an ice pack for my neck and I felt better.

The PA drew 4 vials of liquid marrow (it just looked like blood) and then went in again for the biopsy. The biopsy was actually the least painful part, much less painful than the aspiration.

I made it through! The PA put a big bandage over the area and I was told I needed to leave it on for 24 hours, refrain from showering during that time, and no physical exertion for a day or two. Lab tech guy took my blood pressure (it was actually lower than before the procedure!) and asked me if I wanted to see the bone. Heh. Of course I did. It looked like a 2 inch long piece of thick spaghetti.
Wish I took a picture. But sadly, I did not. Maybe next week after my second biopsy I will. Heh. Maybe not.

Back to the story - Results would be ready in a week and I was supposed to get an email or a phone call stating that the plasma cells were below 5%. My doctor actually said in my appointment right after the biopsy, "I REALLY think you are going to be below 5% - knock on wood."

Unfortunately, I got an email and a phone call saying that I needed to make an appointment to discuss the results. The plasma cells were not below 5%. Way to jinx me! ;)

Let's be honest, I don't really understand how to read the biopsy reports. I've literally googled almost every word and it's still like another language to me, even after the follow-up appointment and everything was very carefully explained. Meh.

Here are the reports. Notice how Dr. R circled the 6-8% and 10-15% and then drew a picture of the bone showing that the biopsy hit a more concentrated spot?

On the flow cytometry report he also circled where it says "plasma cell neoplasm."
After circling the word "neoplasm", Dr. R remarked, "Now Elizabeth. You might read this and think, 'Christ alive! That's cancer!' but it's not really." He went on to explain it's similar to being in the early stages of breast cancer. After he said that my eyes glazed over and I went to a very dark place. I don't really remember one more thing he said during the rest of the appointment. 
I have a different PA for my biopsy and aspiration on December 10 and I hope that I don't have the same amount of leg pain during the procedure and after. I really wish my leg felt better from July! I wonder if the biopsy will be on the left side again or the right. Hmmm. That's all I need - sciatic pain in BOTH legs.

I feel very prepared for my second biopsy now that I know what to expect. Although, I have to say, thinking that it was going to be just, "In...and out" worked last time! I am definitely glad that I didn't know all that the procedure entailed. We'll see how it goes on... MONDAY! One week from today!  Wooohoooooo.