Wednesday, November 21, 2012

Happy Thanksgiving!

Look how cute our Thankful Tree turned out!
 
 
 
We are thankful for...

cough drops
free heat
friends
family
book club
our church
NE Patriots
our gym
remote car starter
working from home
Brewster, Cape Cod
freedom
Dana-Farber
four seasons
health insurance
Honda
long weekends
holidays
green tea
coffee
DVR
each other
sweatpants
water (our water was shut off)
Ben & Jerry's
God
weekends
babysitting
rainbows
massages
Faneuil Hall Christmas tree lighting
short work weeks
Christmas songs
online support groups
education
classes at the gym
Trader Joe's
cell phones
Pinterest
hot water (we had no hot water)
pumpkin bread
smoothies
books
hockey

We are so very blessed. Have a wonderful Thanksgiving - give thanks!

Wednesday, November 14, 2012

It's all gravy...

Last night J and I were discussing the ups and downs of life and all the changes we are facing as of late. Possibly moving, my health, job loss...

You read that right.  Job loss.  I am getting "bumped" at the end of this school year due to budget cuts/restructuring. Yep. When it rains, it pours. Darn you, teachers unions!

At the end of our conversation J sighs and says, "Well, you know what? It's allllll butter..."

Heh.

He meant to say, "It's alllll gravy..." meaning, it's all good.

Whatever works. ;)

It's allllll buttahhhh, man. Totally starting that trend.

Anyway. I met with the high risk OB for my second "preconception" consultation. Good times. The med student, resident, and the high-risk OB named Dr. G were all very nice. Gotta love teaching hospitals - I really perfected my response to, "So what brings you here...?" by the third round when I finally got to speak with the real doctor. Dr. G has never had a patient with MGUS, smoldering myeloma, or active myeloma. She said that was to be expected though since the majority of myeloma patients are in their 50s or older and are not having babies.

Dr. G has dealt with patients who have gotten cancer before or during pregnancy and she talked a little bit about the protocol for patients with cancer. Pregnancy in itself is a immunosuppressed state and women who are pregnant are more susceptible to a lot of things. For my situation, it would really be a "TEAM" approach between maternal fetal medicine (Dr. G or whoever ends up being my OB) and Dr. R at Dana-Farber. They would work together to monitor me throughout my pregnancy. And, if things were to start to progress during the pregnancy they would work together to determine what medication I could take that would be safe for the baby and how early I could deliver, if needed.

Overall, the appointment was sort of a "nonevent" since a lot of this I already knew. And, of course, she really couldn't pin-point my degree of "risk" since there isn't much research in this area.

And finally, unfortunately, there was no recommendation for J to buy me diamonds like at my previous preconception appointment. Bummer! However, she did say, "If things are stable in December, I wouldn't delay. I hope to see you back here soon." Yippeee.

It's all buttah... :)

Friday, November 9, 2012

It's the One Month Countdown...

Approximately one month from today I will be back at DFCI! I have been waiting and waiting and waitingggggg for December 10. Just about one month to go! I feel like I am in the homestretch.


Doesn't this sound like a great day?

9:45 Blood work / drop off 24 hour urine collection

10:45 MRI (I've been told the scan should last about 75 minutes or so)

1:30 Bone marrow biopsy and aspiration (!!!!!!!!!)

2:30 Appointment with a different doctor (my rheumatolgist) over at the BWH



However, really, the MOST important, critical day, will be December 18th - when I actually have my appointment to see Dr. R and I will get all the results - M-spike, urine analysis, MRI, bone marrow. I didn't want to have my appointment with him on December 10th because none of the results would have been finalized and that's obviously what I want to talk to him about.

After the July bone marrow fiasco, I want to have my results presented to me at my appointments when possible... not via email or on the phone and then end up having to make an appointment to discuss the results in person anyway. Luckily, there is the patient portal I can use to find out most of my blood work and test results before my appointment. But it always hides pathology tests so I can't see my SPEP and biopsy results.

Although...after careful consideration, I might email his secretary (God bless her, she hears from me a lot) the day before my appointment to see if she can send me the results of my biopsy and m-spike.

I know, totally cheating.

But, I sort of don't want to go into the appointment BLIND not having ANY idea what my biopsy or m-spike results are. I need to be prepared! And of course, I need to compose my list of questions. :)

Wednesday, November 7, 2012

Perinatologist - another "ologist" to add to the list!

I have an appointment with a "high risk" OB on Monday. These particular doctors who practice Maternal-Fetal Medicine are also known as perinatologists. This is a subspecialty to obstetrics and gyncology  mainly used for patients with high-risk pregnancies.

Side note: I have been starting to keep track of all the different "ologists" I have been to.

So far: hematologist/oncologist, dermatologist, opthamologist, rheumatologist, endocrinologist, gyncologist and now - perinatologist. Crazy.

Anyway, right before my biopsy this summer, I went to see a nice, good, old, "regular" OB for a preconception appointment.

I told the doctor I had a diagnosis of MGUS and she nodded her head and said, "Ohh okay. I've had patients with that. *long pause* Uh, but, remind me exactly what that is again?"

Right... Not helpful!

While going through my list, "Questions You Should Ask At A Preconception Appointment (heh)" - that I had printed off the Internet, I came to the question, "What can my husband do to increase our chances of conceiving?" She responded, "Treat you like a queen and buy you diamonds!"

Funny, sure. Helpful, no. I guess this doctor was trying to lighten up the mildly hysterical person in front of her who was reading a list of 30+ questions from "the bump" dot com. Regardless, I decided that I liked this witty, regular OB. Plus, she said she thought I would be FINE to have kids. Sweet.

Then, in July, after pregnancy plans were shown a big huge STOP sign until December (or indefinitely...), I was advised to go for yet another preconception appointment, this time with a perinatologist.  We'll see if this doctor has heard of MGUS and has tips and suggestions other than J buying me diamonds. Not that I am opposed to him buying me diamonds, of course.

Should be interesting.

Tuesday, November 6, 2012

Christmas is coming!


Election Day is finally here...but...how many days until Christmas??

Come on, really. Priorities. :)

However, get out there and exercise your right to vote!


Sunday, November 4, 2012

Pregnancy & Myeloma

This is why I am here! Okay, I began writing this blog post when I first started my blog about a month ago. I have had it in my "drafts" and have been avoiding it like the plague. To be honest, there is not a whole lot of information or research on the topic of pregnancy and its implications for people living with MGUS, smoldering myeloma, or multiple myeloma. Myeloma and pregnancy is really "uncharted territory" as most people diagnosed are beyond childbearing years.

After J and I got married in August of 2011 we started talking about if/when we would have children. We wanted to be married at least a year before we started on the "baby" journey. As I have written previously, after my diagnosis of MGUS in September of 2009, I never thought pregnancy would be an issue. It never even entered my mind!

In April, I was in to see my doctor at Dana-Farber. J and I were thinking of trying to start a family that summer. I saw a research fellow before seeing Dr. R and I asked her if she thought I would be okay to have children, assuming she would say, "Of course!" However, her response was, "If you want to have children, you should make sure to have them sooner than later." I was 28 and thought that I had plenty of time to have kids - but the fact that she said "sooner than later" was a bit unsettling.

When Dr. R came in he said he thought that I would be fine to have children but he wanted me to have a bone marrow biopsy. I had never had a BMB before and this would be for us to be "super careful" and make sure I was stable before conceiving. He said that if the plasma cells were below 5% green light for babies, if the cells were between 5-10% I would need to be more cautious, and if they were 10% or higher I would then be considered "smoldering." We all know how that turned out.

After my biopsy results suggested smoldering myeloma (10-15%), Dr. R said that if I were to become pregnant there was risk that things could progress more rapidly than if I had I not become pregnant. He said the cells have estrogen receptors and my body/immune system would be focusing on taking care of the baby instead of fighting off these cells and could lead to more rapid growth of the "bad" plasma cells. The baby would be fine - myeloma is not passed down from mother to child - they know that much. He said that if I do become pregnant and things start to go "south" with my health (meaning CRAB symptoms - elevated calcium, renal failure, anemia, or bone destruction) I would need to deliver the baby as quickly as possible in order to start treatment.

Margaret, who writes an excellent blog called, Margaret's Corner: Living with Smoldering Myeloma has graciously allowed me to link a post that she wrote about pregnancy here. Please check it out! As you can read on her post, the limited information that she found was not the most encouraging.

I have done my best googling and I have also not found many studies or articles written on this topic. This is what I have found, some of which is the same as on Margaret's post:

Multiple myeloma and pregnancy: a case report and literature review.

Multiple myeloma presenting with spinal cord compression

Haematological cancers in pregnancy
-There is a table in this article that states for asymptomatic myeloma, the suggested approach is "monitor carefully" during all pregnancy stages. For symptomatic myeloma, pregnancy termination is recommended during for the first trimester. During the second and third trimester, suggested treatment is similar to non-pregnant women using chemotherapy. However, doctors should avoid treating with lenalidomide (Revlimid) and thalidomide as they cause birth defects but might consider treatment using bortezomib (Velcade) but fetal toxic affects have not been established. Aggressive cases require early delivery.
 

Renal failure complicating myeloma in pregnancy

Multiple Myeloma and Pregnancy


Obviously, there is a lot of unknowns with my situation. I need to see what my biopsy results are in December. Also, like I have written before, most people are not diagnosed with MGUS at my age. But scientists now know that MGUS always precedes multiple myeloma. However, many women diagnosed with multiple myeloma are in their 50s,  60s, and 70s - and many had children before diagnosis. Which means, if these patients had children in their 20s or 30s and had undiagnosed MGUS and were not diagnosed with active multiple myeloma until 60 or so...maybe their pregnancies didn't affect things. Maybe not. Maybe yes.