Tuesday, October 30, 2012

Today is the day...

This afternoon can't get here soon enough!!  My appts are at 2:15 with surgeon and 3:00 with heme/onc. 

If you have a few extra prayers today, I would appreciate them.  Until Friday, I had not been anxious.  I knew that everything the drs were telling us was just there "educated guess."  Nobody knew anything for sure.  But after that scan, somebody knows.  Somebody knows exactly what's going on in my body.  As much as I do want to know and begin fighting this, there is still part of me that wishes I could just be dumb and just go on with life.

My coworker sent me this text last night, "Whenever you start to feel afraid, remember I am holding you by your right hand.  I am taking care of you, therefore you needn't be afraid of anything.  Thank me for the conditions that are requiring you to be still.  Instead of resenting the limitations of a weak body, search for my way in the midst of these circumstances.  Limitations can be liberating when your strongest desire is to live closer to me.  My strength and power show themselves most effective in weakness."

The last 2 weeks have definitely caused me to slow down and be still and by all means I know I have been afraid.  I have had a lot of alone time and even though the first few days were rough, I am rethinking that and have become thankful for this time to slow down.  I have felt good and been walking in the neighborhood after taking Cohen to school and I quickly realized that if I get to be off and do this, what a better time than the Fall.  My neighborhood trees are beautiful and there is an island that you can walk out on and look over the Pelahatchie Bay.  And there are these birds or pelicans, I am not sure, but they only come 1 time a year.  There are probably 200 of them and they flock together and are beautiful.  This is something that I would never get to do!  The As far as being afraid, I would be lying if i said I wasn't.  That's all I will say about that.  But I do know God has placed many people in my life to help me along in this journey and that has eased my fears. 

Will definitely update after the appts!!

Sunday, October 28, 2012

Mr Doodlebug

Kinson's Kindergarten class has a mascot called "Mr Doodlebug."  He gets to go home with a special student every Friday, spend the weekend, and return on Monday with a journal of what exciting things he did with them.  When Kinson came home Friday he was so excited to tell us that Mr Doodlebug was spending the WHOLE weekend with us!!  He already had everything planned out-- Mr Doodlebug was going to have a very busy weekend :)
First stop--Soccer game.  Mr Doodlebug sat with me all bundled up as we FROZE watching Kinson score 3 goals.  I was way too cold to get the camera out so you will just have to use your imagination.
Second stop- Nana's house to drop off Cohen.  She was so excited to get to meet him.
Next Mr Doodlebug was going to learn to defend himself.  He was going to "Sword Camp."  Yes, you read that right!  Kinson takes Karate and this Saturday they had planned a afternoon camp for the kids to learn coordination and balance with sword fighting.  Don't worry- the swords won't hurt them.  They both had the best time!

Mr Doodlebug got all revved up for the Big game Saturday night.  Much to my dismay, Kinson has become a Bulldog fan. I know, I know, it could be worse!!  So Saturday we cooked out and prepared to cheer them on.  You know the outcome and it wasn't pretty for the Bulldogs.  Poor Kinson cried his little heart out as soon as Alabama scored the first touchdown :(  We have to work on our losing attitude!!

We had a low key day and painted a few pumpkins (too dark for pictures).  Mr Doodlebug has stressed us out a bit.  Kinson can't keep up with anything and we have an 11month old puppy that chews everything in sight!!  We are kind of ready for Mr Doodlebug to go back to his safe school tomorrow.  But we do hope he had fun and gets to come back soon!

Friday, October 26, 2012

Next step....complete!!

Sorry, I didn't update everyone yesterday but there was a change in schedule with my PET scan.  Luckily, they called and had an opening at 7:00am!!  I jumped on it :)  I had been told no eating or drinking 6 hours before but other than that I knew nothing.  My endocrinologist made me promise not to spend hours looking on the Internet getting myself worked up.  So far, I have been pretty good, only looking at credible medical sites and just enough to understand what's going on (there is very little out there on PTL anyway!)  But last night, it hit me that I had, had several scans and tests but did not know what the PET scan entailed.  I always say ignorant is bliss, well I should have listened.  I got the main idea, inject dye, wait an hour, do the scan.  Well, there were a few horror stories of catheters and having to pee and reactions, etc.  Well that didn't lead to a good night's rest! 

Let me tell you, it was a piece of cake!  Got there, got in a comfy recliner, got the injection, they gave me water (hallelujah!), and dimmed the lights and said relax.  Ha!!  Me relax!?!  I had brought my kindle and phone, prepared to respond to emails, facebook, and surf the web.  But they had told me I needed to stay still and no talking because it causes my muscles to absorb the injection and the images will be harder to read. So I laid back and the next thing I know, he is returning and says its time to go!  I fell sound asleep!! The scan itself was 10 minutes of lying still with my arms over my head.  It was so much easier than the several MRI's I have had...no annoying knocking sounds!!

So now we WAIT.....some more.  Every step that we have done has led up til Tuesday.  I haven't been worried because I always felt that no one knows the exact diagnosis yet, so therefore we have nothing to be worried about.  But now I have done everything.  The scan will be read today.  My Dr will know and make out a plan and fill us in Tuesday.  Now I am getting a bit nervous. Remember that I said "Ignorance is bliss."  In a way, ignorance keeps me sane.  But I hate this state of limbo, I am ready for a plan.  I have asked God over and over, just give me the strength to get through this.  I know He will!

Now I am off to Magnolia's Fall Festival to hang out with some of the sweetest little people I know.  You can't help but go there and just smile! 

Thursday, October 25, 2012

The next step...

I had been waiting patiently all week for them to call me about my scans and never heard from them, so yesterday I broke down and called the nurse (for some reason I feel like it bothers them).  She called back and told me the PET scan and CT scans are scheduled for Friday afternoon. I had to drag info out of her regarding the procedure-- can I come alone?, how do I prepare? etc.  She didn't give much info out but luckily UMC has set up a "virtual chart."  The chart notifies you by email if any new info has been added to it.  This includes appts, labs, and instructions.  This is where I found out I am to be NPO, 6 hrs before the test.  Did I mention that I get the injection at 1:30 and the scan at 2:30?  This will not go well with the one who has been diligently forcing myself to eat throughout the day to gain some weight, per dr orders! So I am sure a big, early breakfast is in store!  We will meet again with drs next Tuesday, the 30th, to get the results of all my tests.

Wanted to make sure I post this before I forgot.  In the midst of our crazy week, last week, Kinson got his first report card!!  He was so proud of it and we were very proud with what it said!  He is reading on a C Level (they start at A).  I have been totally amazed on what he has learned to read when he brings his homework home, in just this short period of time. He got "S" in all the other areas!  As far as behaviors, he has gotten on "yellow" light a few times.  The second time he got on it, he came home and told me that "water" didn't come out of his eyes this time!  Poor baby, cried when he got on yellow light the first time :(  But don't be fooled by that, now it is no big deal to him to get on yellow.......,according to him "red" is bad because you go to the office.  I met with his teacher last week and she reassured me that he was doing very well.  She said he tends to worry about others more than himself and she has to remind him to pay attention to his work.  She also told us that him and 2 other boys have been nicknamed "The Frat Boys" in her class!  He still loves Kindergarten and all his new friends.
This picture is from my phone and please forgive the hair, this was right after bathtime :)

Wednesday, October 24, 2012

Four years ago...

Four years ago, I remember distinctly waking up and thinking "We must be the luckiest parents EVER!!"  Cohen was 4 days old and had just slept 7 straight hours.  Unheard of!  To this day her sleeping has always come easily and that statement is still true.  However, it is true because of so many more things.
  She is the sweetest child with such a loving heart.  She has recently become open to showing her affection with hugs and cuddling.  This was a long time coming.  She has a determination that is fierce.  It shows through all of her accomplishments and we know there will be many days ahead that her determination will get her through.  Nobody can ever look at her and not smile.  She looks at you with those big brown eyes and says, "What's your name?"  She doesn't really care your name but if she gets your attention with that you better pull up a chair because she has tons to tell you.  She's in charge. All. the. time.  I know I said she is sweet and loving but remember determined?  When you put those 3 all together, we turn to mush and yes, we do what we are told :)

This picture is what Cohen looks like when she says "Cheese!"  We also get this look-minus the smile-when she gets mad with us.  We call it her "Marie" face (only my family will understand!) 

It literally tore at my heart to miss her birthday Friday.  We had a family birthday party for her at home Sunday that I got to celebrate with her.  But she has so many people that love her and they made her real birthday so, so special.  She spent the day at the Pumpkin Patch with her classmates and BeBe.  She went and ate lunch with Aunt Deborah and Bebe and then picked up Kinson to go eat ice cream.  Her day ended with Nana, Uncle Bo, BeBe, and Kinson taking her to the neighborhood Halloween party and eat Hibachi and sushi. Yes, the girl can eat some sushi, chopsticks and all! Her birthday continued Saturday at the Boo Zoo party. Wonder why she is in charge??

Cohen has continued to flourish in language and speech these last few months.  Her biggest accomplishment is singing.  The skill began to emerge at the end of last school year and has continued this year.  She loves to sing "ABC's" and the "Days of the week."  She spends at least 15 minutes while in bed singing her heart out!  She has over 20 sounds now and they have began combining them into words i.e. "t""oo"= two.  This is still hard for her.  She can says an isolated sound well but she usually leaves off the beginning or ending sound when saying full words.  We can see so many improvements in other areas too.  She started receiving PT services in September for some gross motor deficits.  In a few short weeks, she can run a little less clumsy and climb steps bringing both feet up to 1 step, without holding on.  

We still know we are the luckiest parents ever to be chosen to be HER parents.  She brings more joy into our lives than we could ever imagine.  She has shown us how much courage and strength a little person can have.  We have learned from her.  Happy Birthday, sweet girl!

Tuesday, October 23, 2012

A few answers to the several questions...

It is amazing to me how resilient our bodies can be.  Besides a nasty looking incision and the globs of glue they used to close it, I wouldn't know that I had surgery 4 days ago.  So far, so good.  

We have received so many phone calls, texts, and emails asking about how we are holding up and what's next (I will get to those questions too), but the number one question asked is what symptoms was I having.  Absolutely none!  I couldn't feel the nodule, nothing hurt, and I hadn't been feeling "sick."  I see my dr every 6 months for labs and every other visit she does an ultrasound.  It was just a regular routine check-up that discovered it. I can't begin say how thankful we are to have Dr Ahmad and her proactiveness.  Because I will be honest, I was ignorant to the condition.  I can tell you EVERY single lab drawn on Cohen and what her conditions entail but besides taking the medicine, I didn't know to be cautious about Hashimoto's.  Yes, PTL is very rare but there are many other issues around Hashimoto's that needs monitoring.

Next thing everyone wants to know is, what's next?  We are still waiting patiently :) for results of the biopsy and I spoke with the nurse yesterday and they are scheduling my PET/CT scans this week.  I will meet with the surgeon and Dr Elkins (heme/onc dr) next Tuesday and should have a plan in place.  She did say that treatment would not begin for 2-3 weeks after surgery to give my neck time to heal.  

Can I work?  Sadly, no :(  The environment that I work in has a very high acuity of infections and that does not mix well with my non-existent immune system.  However, to my bosses and coworkers who read this-- I WILL BE BACK!  You can't get rid of me that easily. To this point, this has been the hardest part.  I call my work, my family.  And they truly are.  My company has been very supportive of us through plenty and it hasn't stopped now.  Bear will continue to work and again his bosses have been very supportive with last minute changes in scheduling and his "office" for the day. 

How are the kids?  Kinson is my "worrier" and Cohen is my "carefree" child.  I spoke with both of their teachers last week to update them on what was to come.  They are the ones who are with our children more than us and I know they will be able to pick up on something is not right. We explained to Kinson that I had surgery on my neck and it was cool that I was getting stitches.  He knows all about stitches so he understood pretty well.  We didn't give Cohen a lot of warning because Friday was her birthday.  It broke my heart to know that we would miss it but it was a special field trip at school and I knew they would make her feel extra special.  Plus, the family members that kept them absolutely spoiled them rotten!!  Of course, they do seen the incision but they are careful and know that I can't pick them up yet.  Kinson also likes to let everyone know that I won't be working for a few weeks.  After we know more, we will decide what we want to tell them.  It is hard for me because I do not want them to think that Mama is "sick." 

What do we need?  We feel so blessed with friends and family and even those we don't know that want to do something for us.  It is hard to ask for help but we know there will be many times when we will need it. I would like for our kid's lives to not be interrupted as much as possible, so there will be plenty of times they will need rides or play dates etc.  Immediate needs, just a few prayers.  Prayers for understanding, prayers for patience, and prayers for knowledge.  We feel God's presence with us and know He is right beside us in this journey. 

I will continue to update as we know more!

Sunday, October 21, 2012

First step complete

We are home!  Thanks for all the prayers, good wishes, and encouraging emails and texts.  Each one might not have gotten a response from me but were appreciated and needed.

In my eyes, surgery was very successful.  The surgeon had anticipated only being able to remove the right side of my thyroid but was able to remove that plus the upper half of my left side.  He also removed 1 lymphnode.  I thought I was prepared for surgery--heck this makes #15 for me-- but I guess I had never had one that was so close to my breathing parts.  The spirometer and I have a love/hate relationship right now.  Because my neck and chest are so swollen, I am not fully expanding my lungs when I breathe therefore increasing risk for pneumonia.  So I diligently breathe in with the machine and proceed to cough my lungs up and feel as though I will rip my neck open :)  Pretty sight, huh?  So far, that has been my biggest hurdle. While in the hospital, my calcium levels did drop but are going to be managed by medicine at home and checked regularly.
We did meet with the heme/onc dr Thursday afternoon.  She was wonderful.  So great that she thought ahead so that I could have my bone marrow biopsy also done while in surgery.  I heard that it can be painful and it is usually done while awake!  Because so much is unknown, she couldn't lay out a definite plan but gave us more of a timeline.  Treatment should begin in 2-3 weeks after getting the results from pathology and my scans.  The PET and CT scan will be sometime this week.  Minimum treatment will consist of 2-3 rounds of chemo plus radiation and will increase as staging progresses.  The pathology report will let them know what type of cells we are dealing with to know which medicines will be used.  80-90% (right now, I don't think statistics apply to me!) are a large, Bcell type that uses 4 chemo meds (I don't know the names specifically but an acronym of CHOP) plus an add on.  The other 10-20% are another type of cells that would use 3 meds plus an add on, the med that is omitted is the med that causes hair loss.  She felt like this still was very treatable and after treatment, little chance of recurrence.  We left there feeling very relieved, encouraged, and confident in her and her team. 
So what are we doing now?  Trying to live life as normal as possible as we WAIT. This is hard for me because normal life consists of working for me and due to the environment, I can't be there.  I love my job and coworkers, so this is going to be very hard for me.  I know there will be days when I feel fine and will want to be doing the normal day-to-day stuff. 
Again, I can't begin to say how overwhelmed we have been by the outpouring of support by everyone.  I have received so many messages from those who don't know me personally but knows someone who knows me or my family.  I have been asked by many if it's okay to add me to prayer lists, and the answer is "Absolutely!"  This is something that we can not go through alone and the more that are supporting us in anyway the easier this will be to get through.  I am holding up well I think mostly because I have nothing for sure to worry about yet.  I had asked many last week to pray for me for some peace, contentment, and understanding during this time until we knew the definite diagnosis. I have felt those prayers and know that until the labs come back, we have done everything that we can do. 
I will continue to keep everyone updated as we know things!

Wednesday, October 17, 2012

The "C" word

I have used my blog for various reasons over the last few years but usually it is just to document and show off the sweetest and cutest 2 kids ever.  I want to be able to one day look back and remember all the good times..........and now we will add the not so good times.  It is very hard for me to type it out but here goes--- I have cancer.  There, I said it.  I have said it repeatedly over the last 2 days.......it hasn't gotten any easier.

Rewind the clock 4 years ago when I was 30 weeks pregnant with Cohen.  I went to the hospital in preterm labor.  The labor was stopped and I was sent home on bed rest.  What they noticed was that my heart rate stayed elevated and it was discovered that I had hypothyroidism. After Cohen was born, I saw an endocrinologist who more specifically diagnosed me with Hashimoto's Autoimmune Thyroiditis. Since then I have had my TSH, T3, and T4 levels checked regularly and managed with medication.  She also likes monitor the anatomical makeup of the thyroid.  On October 1, I went for my annual ultrasound of my thyroid where a 9mm nodule was discovered on my Right lobe.  Nodules are very common in Hashimoto's and usually only of concern if greater than 1cm in size.  However this nodule was new so as a precautionary measure, the Dr wanted to perform a fine needle aspiration.  I had it done the following Wednesday and received the results Monday.  I had researched nodules and learned that 95% of nodules are NOT cancerous.  That means 19 out 20 are benign.  Can you see where I am going with this?  I am in the 5%.  I also learned the 4 types of thyroid cancers and knew that majority were very treatable.  What I did not research was the less than 1% chance of another type of cancer.  I bet you know what's next.  I am the 1 in a million (yes that says MILLION) that has Primary Thyroid Lymphoma.  This is a lymphoma that actually originates in the thyroid. 
Lots of things are unknown at this point.  I am very pleased with my endocrinologist and the team of drs that she has ready to treat me.  I am choosing to continue my treatment at UMC due to the fact of the extreme rarity and the little info out there on PTL.  I met with a surgeon yesterday who will remove the Right lobe of my thyroid Friday.  He will consider taking out the whole thing after looking at the complexity of the tissue.  Hashimoto's thyroids are usually very scarred and difficult to remove.  Clinically, surgery is not required but to get the most accurate biopsy more tissue is required.  He will also remove some lymph nodes to have tested to see if it has spread.  After the surgery, we will wait 5 days for pathology to test and determine the cell type to know what we are dealing with.  I will also be scanned from  "head to toe" to ensure it has not spread.  Of course we are hoping that it has not spread and that the cancer is contained to the thyroid. Chemo and radiation are the most effective with treating this cancer if even contained.  The staging will determine the frequency and intensity.  
Everything is very surreal right now.  Things have moved very fast and I know I have not processed everything.  I have time to do that.  I know it will hit me.  But what I do realize is that I am very fortunate to have a very thorough Dr (I had zero symptoms) and I  can also see that God has done a few things over the last few months to make some aspects of this easier to manage.  Tomorrow we are meeting the hematologist/oncologist who specializes in Lymphoma.  I am anxious to hear what she has planned and meet my new best friends for the next few months.  
I can say how appreciative and overwhelmed I am at the outpouring of support in such a short time.  I can tell that we will be well fed, have plenty of babysitters, and lots of love in the next few months :)