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. :)

 







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! :)

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?

Nope

Do you have a daughter?

Nope

Do you have a pet?

Nope

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





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

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....

MOST CONSISTENT WITH INVOLVEMENT BY A PLASMA CELL NEOPLASM.

HIGHLY SUSPICIOUS FOR INVOLVEMENT BY A PLASMA CELL NEOPLASM.

....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."

Okay.

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.

AND.

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.

Bone Marrow Biopsy Results - December

Here they are...

Raw, with no commentary from me. Heh.





Pathologist:   ***************, M.D.

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


BONE MARROW ASPIRATE REPORT

RESULT:

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

INTERPRETATION:

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


RESULT:

FLOW CYTOMETRY REPORT -- MYELOMA PANEL

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

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
-----------------------------------------------------------------------

INTERPRETATION:
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
SUSPICIOUS FOR INVOLVEMENT BY A PLASMA CELL NEOPLASM. Correlation with
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.

CASE:**********
PATIENT: ELIZABETH *********

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

PATHOLOGIC DIAGNOSIS:

BONE MARROW BIOPSY:

MOST CONSISTENT WITH INVOLVEMENT BY A PLASMA CELL NEOPLASM (see NOTE)

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
SUSPICIOUS FOR INVOLVEMENT BY A PLASMA CELL NEOPLASM.

NOTE:
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)

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

TISSUE SUBMITTED:
A/1. Bone marrow biopsy.

GROSS DESCRIPTION:
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.

CASE NUMBER: 56932.


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. :)

MRI & Bulging Disc

I have some very exciting results to report.

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


Results:

Type: MRI LUMBAR SPINE W/O CONTRAST
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.

FINDINGS:

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
spine.

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.

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. :)