Wednesday, December 29, 2010

The white blood cells that could


I have to admit, when it comes to pictures, I had to sneak in some preview photos from my awesome trip to Chicago, even though this post is about my most recent doctor's visit.  Above is a photo from the The Palmer House, which we visited while we were in downtown Chicago.

Now, for the doctor visit.  We went to visit the neuro-oncologist yesterday and learned a lot.  My new doctor (a very friendly and inquisitive doctor--I definitely got a good impression from him) also recommended chemotherapy as our first line of defense against the new growth.  The chemotherapy they are suggesting is a drug called temodar.  It is taken in pill form and I can be on it for up to two years.  Basically, I will be doing 5 days of treatment, 23 days of rest, wash, rinse, repeat for as long as my body can stand it.  The drug is supposed to significantly lower my white blood cell count.  This causes the exhaustion and susceptibility to illness.  I will also be having regular lab work and MRI's every 9 weeks.

Whew.  So far I'm feeling nervous/confused/excited about the whole thing, depending on the moment.  We're trying to learn as much as possible and mentally prep ourselves as well.  I probably won't be starting the chemo for a few weeks so we can sort out insurance because apparently chemotherapy is quite expensive--who knew?  Okay, that's it for now.  Will post more soon with Chicago/Christmas pictures.

Wednesday, December 22, 2010

MRI News

Okay, folks, no one likes waiting, especially when it's something important (trust me, I know--we waited 1.5 hours today at the doctor's office for my results).  SO, I'm going to do this as quickly as possible.

We went to the doctor for my follow up appointment today and found out that my tumor has grown.  It has grown a fairly small amount (about 2 millimeters), but it is enough to cause concern for the doctor.  He is referring me to a neuro-oncologist so that I can start chemotherapy.  I am going to meet with the neuro-oncologist on Tuesday of next week and will learn more about it at that visit.

The doctor I met with today assured us that the tumor is "behaving itself" and that it is quite slow growing. We knew this day would come.  I was just hoping this day would come in 2030, not 2010.  I will post more after meeting with the new doctor AND I will dedicate a whole post to my AWESOME girls weekend in Chicago.

I just want to thank everyone again for your thoughts and prayers, phone calls and messages.  I know we'll get through this and be stronger on the other side.  :o)

Tuesday, December 14, 2010

White Death!

Well, it seems that the white death has finally struck us!  


We knew we couldn't outrun it--we're not that lucky.  But it came suspiciously early this year.  Perhaps it is a reminder to us that we are REALLY here in Ohio and DEFINITELY not in Charlotte anymore.  Ah well, I hope all of our North Carolina friends & family are enjoying their snow-free sunshine!  


Apparently, Isaac wasn't too impressed with the snow either.  I put him down to walk on his own and he slipped after 10 seconds on the ground.  He sat in the snow for a minute and then walked over to me and said, "Up, please".  Lilla on the other hand, would have happily played out there for another hour if we let her.  We had to drag her away from her bucket and cup to take this picture:


I had to get a picture of everyone all bundled up by the picturesque lantern and frozen kiwi plants.  It was mighty cold!  Even my camera was protesting at being out of it's nice warm camera case.


Ahhhh, happy Mama and Isaac: warm, inside, unbundled, and drinking hot chocolate!

Wednesday, December 8, 2010

29 for the first time!

Since having been diagnosed with terminal brain cancer, my life has been put into an altered perspective for me.  I, like most people, need to work to appreciate what I have and celebrate every day that I have here.  And when I have the opportunity to celebrate a whole year of life, I make sure to go big.  Really, really big.  


So my cake MAY have weighed almost as much as my 18 month old son.  It may have been the exact opposite of healthy eating.  It may have been able to feed a small nation...or a brain tumor mama with a sweet tooth, or maybe 5 or 6 sweet tooths.  But like I said, being blessed with another year of life is a momentous event and is worthy of some big celebrating, including the once-a-year chocolate cake.  

Fortunately, I have been blessed with folks who help me look out for my health when I'm not feeling the motivation I need (or feeling tempted by chocolate cake and television).  One such person, my fantastic sister-in-law, Sarah made sure that I found the yogi in me this year for the big celebration.


For two hours, I had my chi aligned, focused on healing and love, and did not think once about chocolate cake.  All-in-all, it was fabulous and I was really grateful to have the opportunity to learn some new poses and have some quality quiet time.  Which made for an awesome birthday and definitely makes me look forward to the year to come.

OH!  And one more thing!  My MRI has been rescheduled to December 21st and my follow up with the Doc is on December 22nd.  So, I won't be posting info on it till after those dates.  I will definitely keep the blog updated on any news.

Tuesday, November 30, 2010

Brain Tumor Mama's Busy Month Ahead

Happy Thanksgiving and Happy (almost) December!  Folks, I am so excited about what this month will bring!  Of course, my birthday is coming and I'll be another year older (29 for the first time, I swear).  I have an awesome yoga workshop to attend on my birthday, along with a visit from my mom.  I've got a super-fun girl weekend planned with some of my gal-pals in Chicago.  I have my MRI.  I'm going to have an extended visit with my sister, who will be spending her winter break with me.  She will be joining us on a trip to Evansville to visit my mom-in-law's family.  And of course it's December, which means filling the cold weather with warm baking treats and hot savories in the crock pot.  

Hanann, Isaac, and my mom on Eid
We're still working on healthy eating, so I'm trying to work on items low in fat and refined sugar.  Does anyone have any spectacular recipes that are weather appropriate for this time of year?

Isaac and Lilla in their new winter hats
I'll be experimenting with some ideas, so if you have a winning one, please send it my way.  If you live in the area (or in Chicago), you may be rewarded with some of the delights we cook up.  Happy (almost) December!!

Friday, November 19, 2010

A much needed update

Well, it has been quite awhile.  The problem is that I come up with the most brilliant blog post ideas when I first wake up.  Or when I'm showering.  Or while we are out running errands.  By the time I get a chance to sit at the computer, all my creative energy has turned into creative blah.  So here are a sampling of a few of my most recent headline ideas (with a few pictures):

"In a Recent Study, Bee Found to be Sweeter than Flower"


"Lilla Makes a Splash at the Pool, Jumps In, Impresses Mom" (okay, so the picture doesn't exactly match, but our pool pictures are somewhat limited)


"Hanann Performs a Swiss Jig to the Shock and Bewilderment of All" (My sister really has an interesting sense of rhythm and timing)

"Birthday Celebration and Eid Celebration Coincide, Sugar Intake Soars"  (Happy Birthday to my Mom!)

So, we've been up to a lot of different things and I hope to post more pictures and news before another 2 weeks pass!

In the upcoming news department, my MRI is coming up in less than a month now and the countdown clock has started.  The actual MRI is on Tuesday, December 14th and the follow-up appointment is the next morning.  Can't believe it's coming up so soon!  Whoa!  And between now and then are Thanksgiving celebrations galore (and we have much to be thankful for) and my 29th birthday!  Whew!

Monday, October 25, 2010

Sensilarity

When I was pregnant with my children, I saw pregnant women everywhere.  Maybe we all liked grocery shopping at the same time (naturally, around 10pm).  Maybe we all enjoyed attending the same events (not too surprising when it's a sale at Babies R Us).  Whatever it was, it seemed as if I had an extra sensitivity to seeing pregnant women.  I think there is opportunity to coin a new word here.  Sensilarity--a sensitivity to finding people and things who are similar to you.  I seem to have developed a sensilarity again.  But this time I have a sensilarity to things with brain tumors.  As you may recall, this has happened to me before.  It has struck again.

Innocent box of chocolate, pecan, caramel turtles:


Hmm...this one looks different:


Turtle with a brain tumor.  Boom.  Sensilarity:


Thank goodness I'm not seeing pregnant turtles because then I'd be really worried.

Tuesday, October 19, 2010

Stats and such

Apparently, you can track your blog statistics via blogger to see how many people view your blog, when they view it, and from where.  I was checking this out yesterday (yeah, I'm a little behind the times) and noticed that I have quite a significant international following.  Interesting.  So, welcome to my blog international readers! And for my "local" folks, a welcome to you as well.

A couple of weeks ago, Newsweek ran an article about cancer.  The article was titled, "Curing Cancer" and written by Sharon Begley.  A graphic in the article gave me pause and I have been thinking about this graphic for quite some time now.  The graphic showed the percent of people who live 10 years after diagnosis.  For the gentlemen with prostate and testicular cancer, a 10 year survival rate looks pretty spectacular, with 95% of patients surviving 10 years after diagnosis.  Melanoma, Childhood acute lymphoblastic leukemia, and Breast Cancer patients all have a nice survival rate as well (between, 82-90%).  But then the bar graph takes a sudden drop to brain cancer patients with only 31% surviving 10 years after diagnosis.  All I could think was that I have only a 31% chance of making it to Isaac's 10th birthday.  Yikes.  I knew it was bad, but to see it on paper like that made it so.....real.

There is a light at the end of this grim looking tunnel.  After feeling quite upset about this for several days, I did a little research.  I looked up where this statistic came from (the Seer database from the National Cancer Institute) and checked it out online.  You can sort the statistics by other factors (is the patient female?  young?  caucasian? etc.) and I checked out the stats for folks in my age group.  Fortunately, the younger you are at onset, the better your chances are of survival.  In my age group, survival to 5 years past diagnosis is 68%, which was a little more reassuring, particularly given that what they post online to the public is not as updated as what Newsweek gets for their articles.  Besides, who are these 31% and 68% survival people?  Are they the ones who are working hard to kick their tumor's tush?  Or are they just lucky?

Either way, I feel an even stronger urge to raise money for research, raise awareness, and more importantly live my life the healthiest I can live it.  Hopefully, with good choices and a little luck, Isaac will be celebrating his 10th birthday with me there with him.

Monday, October 11, 2010

Mother Nature to Humans: Chill, maybe

As things are quieting down, we are noticing patterns in our daily life.  Going to the park, playing outside, planning activities for after nap, cooking dinner, reading books, going to bed, and starting it all over again the next day.

Autumn always seems to infuse this sense of calm, as if mother nature is asking us to chill out--just like the weather.  So, we are trying to take a page from mother nature's book and chill.  It can be difficult at times; sometimes we adults don't feel like going to the park or we just want to read the newspaper.  All it takes is a little help from our kids to remind us that we need to simplify and just let go and play in a big pile of sand for awhile.

Lilla helping Isaac:


Of course, it has been really hot the last three days, so what does that mean?  If we were to take a page from mother nature's book now...what should we be doing?  Go to the pool?  What do you think?

Friday, September 24, 2010

Normal, again?

(me and my mom)

You all know how the holidays can be.  Wild, exciting, incredibly busy.  Well, two weeks ago, we celebrated the Islamic holiday, Eid, and we are finally settling into a sense of normal life after the whirlwind of activity that comes with the holidays!

Now, I've got a little bit of regularity in my days.  Our weekends are free again.  Things are calming to a nice quiet, steady hum.  I like where we are.

So what now?  Well, I'm making some attempt to study for the GRE.  I'm hoping that a Master's degree will bring me closer to a well-paying job.  I am practicing yoga!!!  I am taking a class at a local yoga studio and so far so good!  I will definitely devote some more blog posts to yoga practice and my fellow yogis.  I am taking the kids to the park a LOT while the weather is beautiful and the other day we went on a 4 mile walk as a family!  Whew!  

Do you hear that?  It's quiet, so you'll have to be very still to hear it.  Hmmmmm.....yes!  It's the gentle hum of my life finding a pace that is blissfully slow and content.  Ahhhh!

 (me and Isaac at Eid prayer)

Tuesday, September 7, 2010

More good news!



Wow!  What a week!  Last week I scheduled an appointment to meet with a radiation oncologist for a check up.  He immediately scheduled me for my routine MRI and BAM!  Before I knew it,  I had an MRI on Wednesday evening.  I visited my parents for the weekend and now here I am with MRI results!  According to the doc (who read the MRI while he was on the phone with me), all is well--stable--and looks the same as it did in March!  Yippee!  Hooray!!

Interestingly, after meeting with my new doctor, he recommended a different course of action should there be growth.  It seems that I will start with chemo if we see growth and then try radiation for any further tumor growth.  Whew!  That was pretty crazy for me to hear.  Chemotherapy makes me think of exhaustion and losing my hair and feeling weak.  This is weird because radiation causes all of those symptoms as well.  Oh well--it's not something I have to worry about now, thank God.

Next MRI is scheduled for mid-December.  I'll definitely write more about it as the time approaches.  For now, let's celebrate!

Thursday, September 2, 2010

Produce with Brain Tumors?!?



The other day, I was in the garden picking tomatoes when I spied an unusual looking tomato.  It was gorgeous and I could tell it had lots of personality--just by looking at it!!!  This is all because, upon further inspection, I could see that this tiny tomato had a BRAIN TUMOR!!!!


Okay, so you may argue that tomatoes don't technically have "brains", however, you will note that the tomato and I both share an unusual growth on the side of our heads.  I felt a particular affinity toward this tomato.  Maybe it has a family?  A future in teaching all of the tiny tomatoes all about mitosis or the Constitution or multiplication?  Well, when the tomato itself got nice and ripe, we had to pick it.  It made me feel a little sad.  So, we did a little photo shoot with our Brain Tumor Tomato to give it a proper send off.


How many tomatoes do YOU know that get this much adoration?  Well, eventually our little tomato had to hop with her little family into the pot, and after a little cooking and a few spices became a lovely sauce for our pasta.  But I can say without any doubt that it was the freshest and liveliest sauce I've ever tasted.

Thursday, July 29, 2010

One year later...

Before (for your sake, one of the less-graphic photos):


After:





Folks, it is amazing all of the things that can happen in a year.  A person can have brain surgery, change their diet, lose weight (53 lbs.!), participate in a 5K, move to another state, raise 2 children (and a husband!), read all 4 books of the Twilight series and more!

I have the support of YOU to thank for this!  If it weren't for Adam's love and kindness, I don't think I would have made it to where I am now.  And our parents came and took care of the kids and me (and they still are!).  And Aunt Susie brought us PRODUCE from Aunt Jeannie!  And Sarah helped us cut out meat from our diet.  And Laura listened to me talk and talk and talk.  And Cathy and Dan helped with the move.  And all of the countless letters, packages, emails, Facebook messages, blog comments, phone calls from everyone have strengthened me and reminded me that I am not alone.  Thanks guys--you rock!  I'm also grateful to God for all that is good in my life.  In Arabic, we say "alhumdulillah!"--praise be to God!

Goals for the next year?  Start yoga.  Refine eating habits (less sugar).  Get health insurance!  Slow tumor growth.  You know, the usual.  

Sunday, July 11, 2010

You know it's bad...

You know it's bad when your husband says your blog is getting lame.  Okay, okay, it HAS been a long while since I've blogged.  I have many excuses, all of them valid and acceptable (in my opinion).  However, that does not change the fact that I am sorely behind on my updates.

Some headlines of my life recently:

"Girl, born on Independence Day, goes potty all by herself"

"Baby turns 1, has big number 2"

"Woman has brain tumor removed, loses 50 pounds"

"Homeless bum finds job, place to live--maybe"

I hope you enjoy the update below.  There are many more updates to come about the above headlines (excepting maybe, the baby one!).

Hohl Family Vacation, Part II

The adventure continues!  After our trip to Busch Gardens, we did not slow down one bit!  We of course, attended the beautiful wedding of our lovely cousin, Stephanie.  Here is a picture of our nieces, Tatiana and Nora.  Does Isaac look a little nervous to you? 


After the wedding we took a day out to a park in Florida.  We walked a trail, played on the playground, and had a picnic lunch.  The temp. may have been in the 90's, but we toughed it out.  And hydrated.  A lot.  A picture of the kids climbing at the playground.


Another trip to Busch Gardens followed.  We spent a lot of time checking out the animal exhibits there.  And getting in touch with our inner ape.  I like how Lilla is looking at them in this one.


On our last day in Florida, we went to the aquarium.  Whew!  What a trip!!!!  In the camper on the way to the aquarium:


On the way home, we stopped by the Carter Center in Atlanta and we stopped in Cincinnati to see my mom, sister, and brother.  Although we have been home for a little over a week, this does NOT mean our lives have slowed down.  In fact, I think things have become more hectic than before.  We went to another wedding yesterday (friends from college, John and Erin) and saw so many friends (pictures to come later--again--I know!).  All this is to say, that the blog posts may not come with the frequency that I like.  But I promise, I will try my hardest!

Saturday, June 26, 2010

Hohl Family Vacation, Part I

After moving in, we were quickly inundated with even more excitement.  Adam's brother, Aaron and his family came from California to Ohio for a visit and his sister, Sarah came from Seattle.  We then met up with another brother, David and his kids to drive and meet with another brother, Chad and HIS kids to all take an EPIC family vacation to Florida.  

STATS:
3 RVs
9 Children
6 Children who are 5 and under
9 Adults
Incalculable amounts of cereal, milk, coffee, bread, cheese, lunch meat, BANANAS, apples, and pretzels.

Lilla and Michael traveling in the RV.


The first night, we stopped to visit Aunt Jo on her farm.  The farm was incredible (sheep, goats, llamas, alpacas, horses, chickens, gardens, and on and on and on).  She also has a pool, which was welcome in the 90+ degree heat.


After we arrived in Florida, we took a trip to Busch Gardens.  Amusement park meets Zoo meets Water park.  The kids and adults all had a blast.




Thankfully, my uncle Paul lent us his RV and SUV to make living and traveling much easier.  We are all getting along pretty well so far and all the kids have survived thus far--thank goodness!   Keep posted for Part II!

Tuesday, June 15, 2010

I've landed

5K (check)
Move to Columbus (check)
Close on the house (check)
Unpack (check)
Settle in (in progress)

Wow!  It's been a wild ride and it's just getting started, amazingly.  The 5K was a success.  We totally rocked it and I am so proud of the team for coming out and kicking tush!


We had a pretty spectacular group and we also were able to exceed our fundraising goal of $400.  We pulled together (with YOUR help) and raised $440!!!  Woohoo!


We also had fun as a group and the kids were great.  As you can see, there were almost more kids than adults!  And some of us just behave like kids.


The move to Columbus was a success.  We are now settling in with the 'rents comfortably.  We have already celebrated two big birthdays!  Isaac and Grandma!





Happy birthday to you!  I can't believe my baby is already 1!  And I can't believe my mother-in-law is only 29!  

Thursday, May 20, 2010

What I'll miss


Tomorrow is my last day at our house.  The kids and I leave for the 5K in Chicago at 3:30 in the afternoon and will go straight to our new home in Columbus afterwards.  I am feeling very nostalgic and am finding myself getting misty eyed every time I think about something that I'll miss.


In the 4 years we lived here, we have become so close to so many people and places down here.





We can never forget our first home, the Habitat for Humanity Restore and all of the friends we have made there.  Or the Penguin and all the times we have eaten there.  Or the family, of course.




Or our friends...




Or the WEATHER!!!!!  This is a picture taken in DECEMBER!!!




Or the memories of where our little family started...


I'll miss you dearly, Charlotte...but we'll be back!  I promise!