Pages

Thursday, May 30, 2013

Current Obsessions

Mommy:
I can't get enough of Republic of Tea's Ginger Peach Iced Tea.  I purchased it one day at Nordstrom's Espresso Bar for $2+ and thought that was kind of ridiculous, so now I purchase the tea bags at Whole Foods or it comes in bulk at Rainbow Grocery.  We also have this iced tea pitcher from Teavana so I can brew the loose stuff easily and pop it right in the fridge!





 
I am also completely addicted to this Easy Almond Granola from Kitchen Simplicity.  The secret, I think, is the almond extract.  I actually put in more than it calls for.  There is no sugar -- just maple syrup and some canola oil.  It's so much better than the really processed/fatty stuff in boxes, and so much cheaper than the really natural stuff in the store!  






Daddy:
Jonathan discovered a recipe for Stovetop Mac and Cheese from America's Test Kitchen that he says is one of the top ten things he has ever made.  And he's made a lot.  It strongly resembles the powdery Kraft boxed version, except you can put in all the organic/natural products you desire!  He was up making this at 10:30 last night for Nicholas, who will feast on it this evening along with some organic rosemary chicken breast!


Nicholas: 
Nicholas is LOVING Jammy Sammys from Plum Kids.  They come in blueberry, apple, strawberry or grape and peanut butter and are the perfect size for little hands.  I ask him which color he wants and he says blue.  I don't know if that's because blueberry is his fave or because he only knows how to say blue!


Wednesday, May 29, 2013

Little Bits of Life

There is nothing too eventful to report here!  We had a fun and relaxing Memorial Day weekend.

On Saturday, we took the ferry from San Francisco to Tiburon for lunch....



We also made Michael Mina's salt-grilled shrimp on our Himalayan sea salt block....


On Friday I was on such a high after hearing the news.  Everything just seemed better to me in remission....Justin Bieber on the radio, the bird that pooped 5 inches from my face, even the man who accused me of taking up two parking spots (I wasn't!).  Thank you to everyone for the cheers and good wishes, both on Friday and all along the way!!!   

Friday, May 24, 2013

Something Amazing Has Happened*

I went to clinic today to meet with Dr. Andreadis and receive my infusion of Brentuximaub. We discussed my scan from Tuesday. He met with the radiologist yesterday about the scan and the BIG message was....

I'm in REMISSION*

I am putting an asterisk next to that beautiful word because there is just one (or maybe I should say two) question mark(s) that remain(s). Those two little nodules in my lung are still there. They haven't grown at all since the last scan, and after his conversation with Radiology, Dr. Andreadis is very reluctant to label them as Lymphoma. He thinks they are "fungal balls" (pretty image, right?). In other words, he thinks it's some sort of fungal infection. But there are no Lymphoma "hot spots" elsewhere in my body, and it's highly unlikely for Lymphoma to only appear in one's lungs, so that is why he says I'm in remission!

The only way to prove that it's infection in my lungs is to biopsy the nodules, which is an invasive surgery. So I'll have another scan (probably without contrast) in 6 weeks, and as long as the nodes do not grow, there will be no biopsy. 

In the meantime, I am "taking a break" from Brentuximaub. I did not get an infusion today. There is thought that it may be contributing to my high liver levels, which by the way were normal today. So the potential liver biopsy has been cancelled. Dr. A adjusted my meds a bit today (back on anti-fungal to address lung nodules and decreased immunosuppressant).  

What an amazing morning. Now I need a cupcake!

Thursday, May 23, 2013

LLS Corporate Breakfast

As this year's Honored Hero, I was invited to give a speech this morning at the Corporate Breakfast for the Leukemia and Lymphoma Society.  I was so glad to be out of the hospital and able to attend!  This breakfast hosts potential local corporate sponsors for the Light the Night Walk in September, in the hopes that these companies will form teams (these teams are usually very successful fundraisers).  I was asked to share my experience with Lymphoma and my speech is below:

I am Caitlin Mullinix and I am probably not that different from you.  I grew up in the suburbs of New York, went to a small liberal arts college, got a graduate degree in hospitality (and met my husband in the process), and we moved to the Bay Area to start our lives.  In 2011, we felt like life was really beginning for us…..we were going to have our own little family.  I was pregnant and due in September.  I had an unproblematic pregnancy and, even though it ended in a c-section, we had a healthy baby that we named Nicholas.  The early days at home with Nicholas were full of the typical baby-related challenges, as we had expected.  But things didn’t get easier as the days passed.  I experienced what I thought were complications from the c-section and pregnancy….fevers, night sweats, shortness of breath.  And boy, was I tired.  But I had a newborn, and I figured, “so this is what everyone is talking about!” 
After several visits with my OB, my symptoms eventually landed me in the emergency room.  A battery of tests ensued, which revealed an enormous mass in my chest. No wonder it was so hard to breathe when baby Nicholas rested on my chest.  The mass was biopsied immediately, but the surgery proved to be too stressful for my already strained system.  I wasn’t breathing well during surgery, so I was placed on a ventilator and stayed in the ICU for a week.
Nicholas was four weeks old when I found out I had Hodgkin’s Lymphoma.  Doctors began chemo immediately – my first treatment took place when I was asleep under the power of the ventilator.   When I woke up, reality sunk in.  I had cancer. What a frightening word.  Cancer is something that happens to other people, not to me.  I was only 32.  I had a new baby that needed me.  I had to return to work.  I had plans.  This was not my plan.  But, everyone emphasized that this was a good cancer to get.  It was highly treatable.  I’d be free of it and move on with my plans. 
For the next 6 months, I underwent the standard treatment for my disease.  Maternity leave from work became disability leave.  Family and friends came from all parts of the world to take care of me, and my husband, and baby Nicholas.  While I had this beautiful little boy to adore during this really tough time, we did have to hire a nanny because I didn’t have the energy to be a full-time mommy.  I also had to spend lots of time at the infusion center. 
The switch from doing the caring to being cared for was emotionally very difficult.  I was supposed to be the nurturing one.  For nine months, I had been “becoming” a mom.  Now, I was back in the arms of my own.  And even though I had all this support around me, I couldn’t help but feel alone.  Although Lymphoma is the most common cancer among young adults, I felt so isolated because of it.
After six months of treatment, it became clear that my disease was unusually aggressive.  It turns out that my Hodgkin’s wasn’t the easy kind to get rid of.  I transferred from CPMC to UCSF and met with Dr. Andreadis.  During the next six months, we attempted several more chemo regimens in an effort to reduce the amount of disease in my body, but nothing worked very well.
Finally, in October of last year, I had a stem cell transplant at UCSF.  My sister, who is three years younger than I, donated her stem cells to me.  Life stopped for all of us, not just me.  She had to leave for a week from her final year in law and business school (not easy), to come out West.  My mom came for the month that I was in the hospital and was with me there every day.  My husband became both mommy and daddy to Nicholas.  My in-laws came from Singapore to help.  And my mother-in-law came for several months and moved into our home to be my caretaker after transplant.  After being released from the hospital, I was under house arrest for a few months.  I really only left to go to the clinic twice a week.  My immune system was as fresh as a newborn’s and the exposure to germs in the outside world was just too risky.    
The transplant was successful in that my body has, so far, accepted my sister’s cells. Some disease did manage to rear its ugly head in the months afterwards, so Dr. Andreadis has me on a brand new drug to the Hodgkin’s game in an effort to keep the disease under control until my new cells are strong enough to fight on their own.  The hope is that in these next few months, my sister’s healthy cells will take over and kill those wicked Lymphoma cells that are left in my body. 
Personally facing cancer opened our eyes that it can really happen to anyone.  And in July of last year, it happened to our family again.  My dad was diagnosed with bladder cancer, and is now himself battling the disease.  When you are healthy, cancer is just something that you hear about, read about, and see in movies.  But when you yourself get sick, you find out that it’s actually all around. 
I am hopeful that my cancer will go away completely.  And that my dad’s will too.  But our fear of cancer will never fade away.  Until there is a cure, there is always uncertainty. In the meantime, we’ve learned that life does go on.  Cancer just becomes part of it, some days more than others. 
We always talk about cancer being cured someday.  Let’s make someday today, for all of us.  Please make a commitment to fighting cancers today by putting on the red blood drop pin at your place setting.  It is a symbol that together, we are committed to finding cures.   I hope as you go about your day today and people ask you about your pin, you’ll share what you’ve learned here today.
We brought Nicholas with us.  He was very chatty and active during the 45 minute presentation, so unfortunately Jonathan had to be out of the room during my speech (Nicholas actually wanted to be up at the podium with me).  But he was able to snap a few pics beforehand!

Nicholas wearing "Da da's" shirt



Wednesday, May 22, 2013

Hospital Again

Last night around 5pm, my skin started burning, as if I had sunburn all over my body. It was also really red, like a lobster. I realizes fairly quickly that I was probably having a reaction to the CT contrast (dye) that had been injected earlier that day. So after putting Nicholas to bed, we headed over to the ER (luckily, Joe and Diane were in town and stayed with Nicholas!). The ER was extremely quiet and I got attended to right away. To my dismay, I was admitted to be observed overnight. I had spiked a fever and this in particular made the doctor concerned. They gave me some antibiotics and other meds that I don't remember. This morning my skin looked better (not perfect, but improved). After some ho-humming about being discharged, we are now waiting for my for the official papers which will give me my freedom today!

I'd love to show you my very red skin but the one pic I have is extremely unflattering. So instead I'll share this one below of the strike taking place right now at UCSF (which is why the ER was dead last night. Nurses aren't on strike but practically all other hourly employees are. They are sending patients to Stanford and Davis for chemo because there is no pharmacy staff to mix the drugs. Transplants are postponed. Nurses are staffing the food lines in the cafeteria. It's a real pity for those with life-threatening issues and if anyone cares to send a letter to the judge who allowed this to happen, his name is David Brown and he's in Sacramento.  Oh and it's not only at UCSF but also at 5 other UC medical centers!)

Tuesday, May 21, 2013

I had a scan today......

And Dr. Andreadis already called to say that the preliminary report is good!  Many "things" have shrunk and although those two little nodes are still there in my lungs, they haven't grown at all.  So that's good.

I'm also dealing with a bit of GVHD these days.  My liver "numbers" are elevated a bit and the steroids I've been taking for the last few weeks don't seem to be having any impact.  So last week, NP Stephany adjusted my meds and we'll see if that helps.  If there's no change, a liver biopsy might be in my future to confirm that I do indeed have some GVHD there (docs need to know so they aren't treating me blindly...ugh....).  But one day at a time!

On another note, Jonathan made this pesto pasta casserole the other night for dinner and it's so delish.  The secret ingredient = olive tapenade.  Just dribble some in the middle along with some ricotta and you'll have people oohing and aahing!!


Monday, May 20, 2013

Chompers

Our pobrecito tripped and fell over a carpet last night, and banged his mouth into the floor.  Once the bleeding stopped we saw that a couple of his top teeth were misaligned, so we hopped on over to the pediatric ER.  We were so lucky that it was completely empty!  About 30 minutes later we were on our way home, with instructions to see a pediatric dentist today.  Which we just did.  

Nicholas was a champ and had a ball at the office.  Xrays showed that a couple of the teeth were knocked up and over a little.  Only time will tell what will become of this injury.  Either the teeth will fall back into place and remain viable, or one or both may die (in which case they would be pulled).  In the meantime, Nicholas is to have soft foods for at least a week and we're going cold turkey with the nighttime bottle (we had been planning on getting him off of it anyway....).  

It was really so upsetting for us to see this happen to Nicholas last night.  It's a terrible, terrible feeling to feel so helpless and to not be able to make it better when that is all your child expects.  We certainly don't want to limit this little adventure-seeker ever, but at the same time, all I want to do is keep him cuddled in my arms for eternity!





Luckily, for Nicholas, life goes on.....

Monday, May 13, 2013

Congrats Leah!

We are in Atlanta celebrating Leah's graduation from Emory Law and Business School!  Today was a lovely day -- sunny, but not hot, and happy!

Nana, Uncle Brendan and Uncle David very kindly came to SF to watch Nicholas while mommy and daddy took their first vacation in a year!  We miss him a lot though!  Nicholas has been having lots of fun at home. 

We've been having fun eating and relaxing. 

We even got to visit Leah and Frddy's Venezuelan Arepa place for lunch.  Delicioso!