Hive Outbreak Update

I REALLY dislike hives.  They kept me from sleeping for 5 straight days (beginning last Wednesday night).  Honestly, when I look back at those 5 days, I don't even know how got through them...except for God.  He carried me through them.  That was literally the most suffering I have ever had...even worse than the suffering I endured on cancer treatment.  Constant itching...on tons of medication...feeling as if I would stop breathing soon...it required a lot of prayer to get through those days.   The extremely itchy, warm hives covered my body....literally, from head to toe.  The only area that wasn't covered in hives on my back was my spine.  I even had them all over my face, my lips swelled and it felt as if my throat was closing up.   So, I lay in bed, unable to sleep over the weekend, wondering if I should go to the emergency room or not.  Everything I read said to go, that the reaction could be anaphylaxis, yet I just wasn't sure what to do.  Finally, on Monday morning, after the 5 days of enduring miserable hives on no sleep and with no improvement (even on the large dose of prednisone and antihistimines prescribed by my oncologist), I decided to head to the nearby ER.  Unfortunately, the ER doctor said that I was doing all of the right stuff and that the hives were likely ideopathic (meaning, no known cause).  Over the weekend, based on research, I had decided to add an H2 inhibitor (antihistimine--pepcid) to the line-up of drugs I was already taking. He agreed with that, but increased my prednisone even more.  Also, my oncologist prescribed a new, stronger antihistimine to take alongside the others.

A poor quality photo, but an example of some hives on my right arm.

Hives can be very frustrating, when you cannot pinpoint the cause.  I requested that my oncologist look into further my suspicion of the outbreak being related to my hormone levels.  After scouring the internet trying to figure out the cause of these things, I came across a lot of other women (who didn't even have cancer), who pointed to hormone levels as the cause of their hive outbreaks.  Many had visited with countless physicians,  who were unable to identify causes.  Yet, when they attempted to implement regimens to try to balance out their hormones, often the hives resolved.  Some found they had estrogen dominance (excess estrogen in their bodies), while others found out they had a rare autoimmune reaction to their own progesterone.  I decided this was worth a shot to look into this further.  I find it funny that this is the second month in a row where I had a hive outbreak.  At almost the same exact time last month (a couple of weeks after beginning Tamoxifen and likely near ovulation), I had a two week outbreak.  Thankfully, it was not as serious as this one.  When they resolved after the two weeks, I assumed they would never be back.  So, my concern is that what if my estrogen levels are crazy high during certain times of the month?  That would not be good for potential cancer recurrence, since my cancer grows with estrogen.  Or, what if I am "allergic" to the progesterone my body is producing?   On Monday, my oncologist referred me to my ob/gyn physician to discuss the issue and request testing, etc.  I had that appointment this morning.  My ob/gyn reluctantly agreed to the testing, but said that it would be difficult to tell at this point if my levels were high (unless they were crazy high).  I guess everyone has a different normal?  She said though she has seen some strange things happen to women with high levels of estrogen.  One patient even had seizures right around ovulation.  So, we tested my levels this morning, and we will test them again around the time of my expected ovulation (if that happens--my body is kind of confused right now with cancer treatment, Tamoxifen, etc.)  One potential solution if the problem is related to my hormone levels will be to give me a monthly injection to keep my ovaries from producing hormones.  It would essentially temporarily push me into menopause.  I am hopeful to find out the results of the testing tomorrow.

So anyway, what is the moral of this story?  I believe there is a sovereign, big plan for everything single thing that happens in our lives.  It gives me extreme peace. If I didn't have this level of extreme miserable hives, then I probably wouldn't have done the extent of research I have done and demanded hormone level testing.  What if we uncover something that changes my treatment regimen?  If I would not have these hives, we would have continued on the regimen of Tamoxifen with no others changes.  Although I can't believe I am now saying this, I can say I am thankful for the miserable hives.  God is showing me and the physicians something through these terrible things.  I have to get this resolved though, because it is difficult to take care of my two precious kiddos on no sleep.  But, I am so thankful that I have been able to get some sleep the past two nights.  The hives situation continues to improve and I now only suffer with a number of hives that I can actually count.  Yet, I am also on a TON of medication, so this is definitely not a long term solution to the problem.  I am thankful that God has helped me to be a good mother and wife through these crazy times on little to no sleep.   I am thankful that we will be figuring out a solution soon.

Now, for the prayer requests:

• Please pray that we figure out what is going on in my body.  
• Please pray that I can be weaned off all these medications with no issues and no hives outbreak. 
• Please pray for guidance for the physicians on how to treat me--for example, do I need to see a new physician expert, such as an endocrinologist?   
• I am going to start back up on a new brand of Tamoxifen tonight (my oncologist now is thinking I am probably not allergic to Tamoxifen now since they continued to get worse after stopping the drug a week ago).  So, please pray my hives do not get worse from that.   

Thank you so much for your continued prayers!

Love, Heather

Cancer Survival Update

It feels weird to be fighting for my life, and seeing my doctor weekly, at minimum, and then all of a sudden hear my doctor say, "see you in October," at my last appointment.  My next appointment with my oncologist is in three months!  Now, I do have a PET scheduled on August 13 though.  It has been 6 months since my last one. I can't believe that much time has gone by!

I do have a new prayer request though.  One of the biggest parts of my treatment is the 10 plus years that I will be taking the hormone therapy drug, Tamoxifen.  As a reminder, my cancer was highly estrogen receptor positive.  This means that estrogen binds to the receptor sites of the cancer cells and is what makes it grow.   Tamoxifen works as an anti-estrogen--it actually binds at the cancer cell receptor sites since it looks like estrogen (but is not).  So, since those cancer cells can no longer grow, they die.  I have been told that Tamoxifen is my key for survival and to prevent recurrence of cancer.  In fact, my MD Anderson oncologist told me that this was one drug that I could not even miss one day taking--it is that important.  Well, I have been on Tamoxifen since I completed my radiation therapy in early June---and I have been having problems with it.  About a week or two after I began taking it, I broke out with hives all over.   I take my tamoxifen at night with dinner; each morning I would awake covered in hives.  The only change in my lifestyle was taking the drug, so I have assumed it was due to that.  I began taking Benadryl every night before bed, and that really helped control the hives.  Then, after about 3 week of hives, I stopped taking the Benadryl and my hives didn't return....for a couple of weeks.  Oh...and by the way...I had no idea that taking Benadryl was contraindicated with Tamoxifen.  Apparently, it can prevent it from working, and the Benadryl side effects can be increased when taken together.

Two days ago, I awoke with hives once again.  Unfortunately, they progressed as the day progressed.  Yesterday morning, I awoke with hives all over my body, literally from head to toe.  I was miserably itchy and even Benadryl didn't help control them.  When my lip began to swell, I thought I probably should notify my oncologist.   So, I did and they wanted to see me.  Apparently, when your face and lips begin to swell it can be somewhat of an emergency.  I took a prednisone (I was already loaded up with Benadryl) and headed to my appointment....with the kids.

Entertaining the kids at my doctor appointment in the exam room with their favorite things:  food for Abbey and the ipad for Luke.

Thankfully, my doctor's office is very understanding about having kids tag along with me.   Anyway, here is the new plan.  They want me to quit taking the tamoxifen for a week.  I took some more prednisone to clear up the remaining hives.  After a week without Tamoxifen, I am going to try a new generic brand of it (the original maker is no longer manufacturing it).  Drew and I read that sometimes people can be allergic to the inactive ingredients, which differ from brand to brand.  Thankfully, the only pharmacy that I am allowed to order the drug from, since it is one I am taking long term, is able to special order a different brand for me.  So, I am praying that this new brand does not cause me to break out in hives.  If it does, we are going to have to take a different route with regards to preventing cancer recurrence.  One option that my oncologist mentioned is taking a drug to shut down my ovaries, which will lower the level of estrogen that is currently circulating in my body.  I asked her if it is as effective as Tamoxifen.  She said that there are not enough studies on it yet (many studies have shown Tamoxifen's ability to decrease chance of recurrence).  But, she said she thought that it was at least as effective as Tamoxifen.  The bad thing about that is that I am so young, and it can put me at risk for things like bone density issues and heart disease (since estrogen helps prevent those things).  A lot of women my age who have hysterectomies or have their ovaries removed (due to being BRAC+), still take Tamoxifen so that they can prevent issues like osteoporosis or heart disease.  So, I guess we will have to figure this out.  I know, regardless, God has a big plan with all this.   I am just praying (and asking for your prayers also) and following along with his direction--like he has already entered the destination and route on the GPS, and I am awaiting all of the directions.  Thank you for your continued prayers for me and my family.  We really appreciate it.

Prayer requests:  
1.  Please pray that we will figure out the best solution for my body with regards to preventing cancer recurrence, and keeping it away!
2.  Please pray that my PET scan on August 13 shows NO EVIDENCE OF DISEASE (NED)!  That would be pretty exciting and it is what we are expecting!  :-)  If it does, I think we need to have a NED party!

The World's Largest Urban Bat Colony has some competition

Most of our out-of-town visitors who have stayed with us have had the opportunity to see the largest urban bat colony in the world.  Just google "Largest urban bat colony" and you will many links to pages about our Austin bats.  Huge crowds gather nightly around the Ann W. Richards Congress Avenue bridge in Austin to watch the 1.5 million Mexican free-tailed bats shoot out from under the bridge.    Every evening around sunset, the bats emerge like a black cloud from the crevices of the bridge.  They search the countryside in search of food--it is estimated they consume from 10,000-30,000 pounds of insects.   So, of course, we welcome them here.   These bats are so cool!

photo credit:  Pamela Phillips  This was taken under the Congress Avenue Bridge in Austin.  Cool photo!

The bats give birth in June or July and hang out until around October/November, when they head back South to Mexico.  The number of bats that emerge increase later in the summer, as the pups begin leaving the bridge also to hunt for insects.   The bats are a pretty big deal around here.  In fact, Austin even holds a "bat festival" annually in August (at the peak of the season).

Before we had kids, Drew and I enjoyed trekking to downtown Austin to see them.  But, now that we have young kiddos, visiting downtown Austin at sunset with our young ones is not so convenient (or fun!)  :-)

But, luckily, we don't have to travel far from our home at all to see bats.  You see, we have a pretty awesome, huge bat colony that is competing in size with the one in downtown Austin very close to our home.  Actually, I mapped the distance from our house to our suburban bat colony and it is less than 5 miles away.   Apparently, our nearby bat colony includes a little over half a million bats--so it is not the 1.5 million bats that emerge from the bridge in downtown Austin, but it is still neat to experience.  We have been visiting this bat colony for the past few years and it seems to be growing in size.

Since it is nearby and we thought Luke would think they were pretty cool also, we recently decided to visit the bridge to watch the bats emerge.  We arrived late, when they were already departing the bridge, but we were still able to watch a ton of them.

You can see bats flying around under the bridge, getting ready to exit.

I captured a video, so you too can experience the sights and sounds (and not the smell of the bat pee that we experienced).  But, please forgive the poor quality of the video.  It was dark and so I struggled with seeing the screen.  Therefore,  I have some trouble with the manual focus.  But, you still can get a little bit of the experience with the video. If you want the true experience, you have to visit yourself!

Time to head home!

Saturday Morning Family Adventures: Blue Hole along the San Gabriel River

I LOVE an adventure!  I try to have a mini-adventure with the kids every day.   But, the weekends are times for bigger adventures as a family with daddy!

This morning we kept it simple and headed up the road a few miles to Georgetown.  Near one of our favorite restaurants, El Monumento, is a fun little hiking trail near Blue Hole.  Blue hole is a scenic lagoon, bordered by tall limestone rock formations.

So pretty!

Luke loved climbing on the big rock formations along the trail.

Abbey enjoyed climbing atop the rock formations too, but she took the careful route--the man-made stairs.

checking out how far she had come.

Next, we had to check out the water.

Daddy was showing the kids how to select good "skipping stones."   Drew is a skipping stone expert.  I am....well...not so much. 

finding the perfect stone.

trying to select a proper skipping stone.

Abbey very carefully selected stones.

And she enjoyed tossing them into the water just as much (or maybe even more) than Luke did.

If you look closely, you can see fish in the clear water.

...like these guys.  There were several groups of people (and one crane) fishing while we were there.   We even saw them catch some fish while we hiked.

Abbey and Daddy looking for fish.

Abbey found some pretty little purple flowers.

Luke eventually gave up searching for the ideal skipping stone and just began throwing lots of stones in.  Surely, one of them will skip, right?

We saw all sorts of fun things we don't normally see at home: interesting bugs, fish, pretty little flowers, fun river stones....and......crab legs?

We worked up an appetite and were very conveniently located next to one of our favorite restaurants.  El Monumento is awesome.  Like one of our other favorites by the same owner, Monument Cafe, this restaurant sources its food locally and everything is natural and/or organic.  They serve home-style, made from scratch Interior Mexican fare.  The restaurant is surrounded by beauty as it sits above the San Gabriel River.  They also (just like Monument Cafe) even have their own gardens where they source a lot of their food.  There truly is nothing like eating really fresh, local food.  After eating, we always like exploring the grounds of the restaurant.  What a treat!

"Last week was vacation, Luke. This week is 'real life'!"

I think we spoiled the kids a bit by planning so many fun things for an entire week while we were visiting my family in Oklahoma.   The next morning after we got back to our home from our week away, Luke asked, "What are we going to do today, mommy?    Are we going to ride some rides, or go down the tape slide?"  The week was pretty Luke-focused.  We did all of his favorite things.   Here are some pictures that tell the story.

Of course, one of his favorite things to do was play at Grandma and Grandpa's house with his cousins:

Luke and Lilly before walking to the pond.

Kaylee in the swing.

Luke loved soaking his cousins in the pool.

Traber got soaked...but not from Luke...his dad surprised him with a cup full of water.

Kaylee's hair is so pretty!

Abbey wasn't as happy to be in the pool as the others were.

Drama, drama! pouty face.

Not happy about being put into the pool.  

We also visited a fun children's museum with tunnels constructed from clear packing tape. Luke stayed on this thing almost the entire time we were at the museum.

Drew and Abbey walking through the tape tunnel system.

There go Traber and Luke through another section of the tunnel.

and through the tunnel slide.  This was their favorite part!

There were other things to do at the museum also though:

Making music.

Abbey found some balls.  She was very happy about that!

playing with their shadows and cool lights.

But, the fun didn't stop there.  We also visited the "Kiddie Park" in Bartlesville, OK.  This place is awesome and has become an annual family tradition.  It is awesome because all of the rides are geared towards the age of our children.  Also, they are super-cheap.   They actually increased their prices to $.50 per ride this year.  We spent $8 and Abbey and Luke got to ride plenty of rides.

Luke was still scared of this roller coaster.  He was afraid last year also (click here for the post from last year with video from inside the roller coaster car).

My sister, Holly, braved it up and rode this ride with several of the kids.   

Brody and Traber on the airplanes.

Luke and Linnea

And, the week wouldn't feel complete without a trip to the zoo!

Checking out some bears.

The monkeys are funny!

So much fun!

Linnea likes the sea lions.

So now, after reading this and the previous two posts, you probably understand why Luke asked what the "plan" was for the day after we returned from our trip.  We had so many fun activities planned that week.   You want to know what my response to Luke was?   I replied to him, "You see, Luke, last week was vacation.  This week is real life."   Ha!   We actually do try to plan a mini-adventure almost daily.  But, they are not nearly as extravagant as our daily adventures that week.  I was concerned we had spoiled the kids, but after my response, Luke was very content.  He is such an awesome kid.  He is content with pretty much anything.  He doesn't need a lot of "stuff" like toys.   He doesn't expect us to buy him "things" or to take him to special places all of the time.  All he really wants is to spend special time with us.  He doesn't really care what it is we are doing.   Therefore, that is what spoiled him the most.   We had a full week of non-stop family time.   Daddy didn't work and we just played....played.....played.....together as a family.  I am so thankful for the many wonderful memories God is allowing me to experience. Each day He gives me (and all of us, really) is a gift.   Now that we are back from vacation, I am excited to experience this next chapter in my life.  I have been praying to God, telling Him that I am ready to give everything up for Him.  I want Him to use me however He desires.  I am excited to see what that will be.  But......that is for another post.   Goodnight for now!