Melasuckanoma

Well one minute you are hanging Christmas lights, and the next minute you are in the ICU at MD Anderson.  This unfortunately is all part of the melanoma journey.  So, what happened?  HOW ARE WE HERE????? It all started on Tuesday morning.  Bennie kind of coyly asked me when I thought they would schedule his next brain MRI.  So of course I ask a bazillion questions, because I immediately know something is up.  After 30 minutes of grilling him he finally tells me he had a bad headache on Monday, and it hurt when he woke up and anytime he would put pressure on his head.  I tell him we need to get it checked out ASAP but of course he tells me its probably sinus issues.  Fast forward a couple days, and he was working late.  He called me around 8pm on Thursday night and said he probably needed to go to the Dr. because he couldn't read, type words, had a headache, and felt really disconnected.  I finished putting the kids to bed, and my parents came over so I could take Bennie to the ER.  Bennie and I were hoping it was a fluke sinus infection (even though we both knew) so we took him to the ST Lukes ER by our house.  They immediately did a CT Scan and found a 2.5 cm brain tumor that was causing a lot of edema around the brain with hemorrhaging as well.   MD Anderson was on diversion status (which means they wont except patients who are at another hospital)  so they wanted to take Bennie by ambulance to another St Lukes that has a neurology department.  We knew we had to get to MD Anderson.  I called the on call Dr. and asked if we could escape and just drive down there.  He said that would be best (but don't tell anyone I told you to do that in case he dies on the way).  So we signed against medical advice and Bennie's brother, Barney, and I hauled butt down to MD Anderson to get him to the ER.  We got him there is 30 minutes, and he was quickly seen by a ton of Dr.'s thoughout the night.  It was determined his brain was too swollen to immediately do surgery.  They put him in ICU for two days and pumped him with steroids to try and reduce the swelling.  It WAS THE LONGEST WEEKEND OF MY LIFE.  He was constantly monitored for signs that he would need emergency surgery, but he held on until his surgery time on Monday.  Monday WAS THE LONGEST DAY OF MY LIFE..... AND SCARIEST.   Bennie went into surgery, and they said it would be about 4 hours.  About two hours in a lady came to put us in a room because she said the DR. wanted to talk to us.  The entire family about died.  We had no clue why she would be talking to us midway, and we all came unglued.  The Dr. came in finally and said the surgery went great, but it the brain was still very swollen.  She said there is a rather large possibility Bennie would have Gertsmann's Syndrome because of the swelling and damage.  Some people don't get it, but she said to expect that.  Gertmann's Syndrome is basically mixing up right and left, unable to solve arithmetic, analytical problems would be difficult, and sensory and spatial issues.  Bennie did great through surgery.  We saw him in recovery soon after, and he looked good.  I was so happy to see him.....and he knew who I was!!! Neurologists continued to do tests on him to test how he was recovering, and he is progressing good.  He still has some trouble with processing thoughts, reading, and typing but we are confident as the swelling continues to subside he will improve.  He got to leave the hospital yesterday, just two days after having brain surgery! AMAZING!!  SOOOOOO.......we are at MD Anderson right now getting a PT scan and will that will determine if has tumors elsewhere in his body.  It will also determine his treatment moving forward.  We will be meeting with his Dr. next week, as well as a radiation oncologist.  Because his brain tumor hemorrhaged there is a large probability it will return or spread across brain.  He will be doing whole brain radiation or a focalized radiation to try and stop that from happening.  It is going to be a rough couple of months getting through all of this, but once again could be worse.  WE are blessed he only had one brain tumor, and we are blessed it happened this week and not Christmas.  The kids were so excited to have Bennie home, and we are praying there are no complications that he has to come back here between now and Christmas.  We want Emmi and Colby to be able to have a nice Christmas with their Daddy!  Please pray he will recover smoothly and we can come up with the best plan of action with the Dr.s. 

Free

We went for results yesterday and got the answer we so desperately wanted to hear.... No Tumors!!!!! We were soooooooooooooooo excited!!! Nothing lit up on the pet scan!! His kidney function is still really elevated and the Dr. Said it was serious that we get that down.  We don't want Bennie to go into kidney failure, so it seems like a great time to let his kidneys heal.  Since Bennie doesn't have any tumors right now they are taking him off his medicine completely for 3 months....or until the next pet scan or until Bennie feels anything abnormal.  All this is scary, but we feel completely and totally blessed that we have this luxury and time to let his kidneys heal!! The worst case would have been going in to find out tumors are growing, and not be able to do treatment because of his kidney situation.  So.... If anything does appear in the near future  hopefully his kidneys will be A ok and we can start a clinical trial or do zelboraf again!  But the good news is we have options right now and he has no tumors!!!  And he won't be on any medicine..... So he will feel good!! Thank you so much for all your prayers, and we are just praising Jesus for this great news!!! It feels amazing to have all that anxiety and worry lifted off your shoulders !!! We can breathe!!!!!! We can eat and sleep again!!  We can enjoy every moment we have right now!!

Scanxiety

Well, its scanxiety time!! That's what we call the anxiety that comes with upcoming scans!! The feeling is horrific.  Let me give you a little glimpse of what it is like coming in for scans.  First, you drive up to this hospital and cringe.  We are back... back to this place that is very last place on the places I would ever want to go to.  UGH!!! Then we go to the waiting room and wait!  Wait! Wait! Wait!  Inside you feel like you want to explode from anxiety.  Then the coffee lady volunteers come in, and offer coffee to all the fellow patrons who are all freaking out on the inside.  Hoards of people go in for the coffee....but not me.  I keep waiting.  I wait for the Xanax and Vodka cart to come by so that my anxiety can be relieved, but it never comes!!  Just kidding....but it would be nice to be sedated until tomorrow afternoon when they deliver results.  Then all the anxious people inhale their caffeine, and that anxious energy is quadrupled.  People start yapping about their ailments, and how horrible of a time they are having.  The people in the waiting rooms are very nice and caring, and can directly relate to what you are going through.  You listen to about 30 conversations at once, and think to yourself how we even got to this point!! We are typically the youngest couple, and get multiple stares from people thinking the same thing.... WHAT ARE THEY DOING HERE!!!!!!!!!  Then Bennie goes back for his scans, and I try and do something on my laptop but usually its unproductive because I can't think straight like right now!!! Then we leave, and we go home and try and occupy our time and thoughts with something other than what the impending results will be. 

The next day we go back for results.  This visit is typically worse anxiety than the day before.  We continue waiting until someone comes into the room and delivers whatever news!  I am praying so hard right now  that everything is still alright.    But it is the first scan he's had since being on the decreased dosage for over 2 months.... so obviously we are scared.   I will let everyone know tomorrow what the news is..............

Protect the Skin You Are In

One of the many questions that people ask Bennie and me is what sunscreen we use since being diagnosed with Stage 4 Melanoma.  I was going to make a list of some websites and links for what we have seen first hand that has worked (and we have tried a ton of products!)

We both learned of this sunscreen through a fellow blogger whose husband has stage 4 melanoma as well!  Her husband also goes to MD Anderson, and I've looked to her as the one of my most helpful mentors through this whole battle: www.martinfamilyjourney.blogspot.com

Anyhow... the sunscreen is www.bluelizard.net
We used it the entire time we were in Hawaii this spring, and none of our family members were sunburned!! It is a little pricier than other sunscreens, but it is great for sensitive skin and they even have a version to use for babies.  It is super thick, and we have found that it offers the best protection!!  You can order it through their website, or amazon as well.  I heard through the grapevine that Target was trying to carry it in their stores, but I haven't seen it there.  I should know since I am there every other day!!


One sunscreen not to get is the aerosol cans.  They are definitely really easy to use, especially for toddlers on the run, but it doesn't get consistent coverage.  Also, our Dr.'s have said they aren't sure what the inhalation of those fumes could do to little lungs.  So... even though it's easy....better safe than sorry!  Once you make sunscreen a part of your daily routine then your little one won't care too much they are getting slathered down with goop!

In addition to sunscreen Bennie also wears SPF clothing daily as well.  We have also purchased special  shirts and hats for all of us for when we will be in the sun all day!  Here are a couple links to check out for sun protection clothing:

www.columbia.com
www.coolibar.com
www.rei.com
www.outdoorresearch.com

Those are a few of the stores that we frequent!  I was having a talk with someone about how they hated that they were so pale..... but I reminded her its better to be pale and have skin that doesn't age than to be tan and have a scar on your left arm that looks like a great white shark took a chunk out of!!

End of Summer!

Here is Bennie and I at his last appointment at MD Anderson.  We had to wait for two hours in the room.. so we got a little bored.

The appointment went as expected... Which is rare.  His kidneys are still about the same, so he is still doing the same thing he has for the last month or so.  They also said that in 2 weeks he will be getting a PET scan instead of his normal ct scans he gets.  They don't want to risk damaging his kidneys anymore with the dye and the PET scan is supposed to be less toxic.  This will be his first full body pet scan, and that is a little scary because we will be taking a look at areas we haven't before. But, we are praying everything is still the same as last time!!!!!

We are still enjoying our summer!!!  Even though the kids started school this week, we got away this weekend for Labor Day.  We just went to the Space Center and Kemah for the day with MiMi and Pops.... And we all had fun!

Keep Calm and Carry On

It's been awhile since the last update, but we are still here.

 The last month has been pretty uneventful.  About a month and a half ago Bennie was taken off of his medicine for a couple of weeks because of his kidney function.  After his last scans and bloodwork his kidneys were still not functioning properly so they reduced his dosage from 3 pills twice per day to 2 pills twice per day.  Then about a month ago that wasn't helping so they further reduced it to just 1 pill twice per day.  Well... that is a bit scary because research shows that the lowest dosage to go down to is 2.  So for a month now Bennie has been down to one.  The good news is that the side effects have gone down... and he has a little bit more energy.  The bad news is that we don't know if his cancer is still being controlled because of the very small dosage he is on.  So, we go back this week for another followup at MD Anderson, and then in another month for another round of scans. 

We went on a nice camping trip in the Hill Country and floated the Guadalupe River for Bennie's fathers 50th Birthday.  We rented a 30 foot travel trailer for the first time:

It was nice to get away for a weekend, and it was nice that Bennie enjoyed himself and felt great!!  He was able to stay out of the sun for the most part and covered up everything and wore sunscreen, but the sun only got to his hands... and they burned.  If he was on the full dose of Zelboraf I'm sure this would be much worse:

 

Here is Colby with the fish he caught:

We have had a nice summer, and we have enjoyed staying indoors away from the brutal Houston heat and sun at the movie theater!  We have seen all of the kids movies that have came out!!!  We are really blessed to have this time where the treatment that Bennie is currently taking hasn't really affected him all that much! 

Also, in about a month I will be walking for the Aim for the Cure Melanoma walk at MD Anderson on September 21st.  It will be fun to raise money for a charity that will fund research to help find a cure for this awful disease!  There have been so many advancements in the last two years in the field of Melanoma, and we pray that more will become available to help Bennie and all those suffering with this cancer. 

Here is my fundraising page if anyone would like to read more about that:

Sponsor JANET LUNSFORD in AIM for the CURE Melanoma Walks

I will update more on Tuesday after the followup appointment!

Rollercoaster Ride

The last week has seemed like the longest week ever.  When you have scheduled scans impending it pretty much makes you feel like you can't breathe.  A nervous wreck is an understatement.  You cannot focus on anything except what your life will be like after the appointments.  You literally never know what the Dr.'s will say or do.  So many times we have gone to MD Anderson expecting one thing, and then we get the complete opposite.  This time was no different.  We went into these scans thinking the worst, and hoping and praying for the best.  Bennie has been having hip pain, and a few headaches which had us on edge.  About 70 percent of people with metastatic melanoma eventually end up getting brain mets.  We thought for sure this was the case.  One of the hardest parts of dealing with this disease is the fact that you can't plan.  In a sense you can plan, but in your mind you are thinking that you really only have the time between now and next scans.  We are thinking in our minds will we be able to go to the circus this weekend? Should we pack bags for the kids in case something is found on the scans and he has to go into the hospital again?  You just never know what to expect.  It is so frightening when worrying about everything that could happen, and its hard to keep the positive thoughts alive and well.  Monday night after all of the scans was very hard.  The MRI tech said to Bennie after he was done... "Well Good Luck".   Those three words scared us so much.  Why did he say that?  Does he know something we don't?  Why couldn't he have just said "Have a nice day"?   Tuesday finally rolled around.... results day!!! We knew whatever news we got would be alright.  We have so many people supporting us and praying for us each day that we could take anything thrown at us.  But we weren't ready.  We are still enjoying this medicine that he can take from home, he can go to work, he can come home to Emmi and Colby at night and play with them.... we were not ready to give that up!!!   The nurse called us back to a room, and we sat there for an entire hour.  Every single footstep going down the hall would have us on edge.  The torture of footsteps coming towards your room is unbelievable!!!  Finally the nurse practitioner came in and delivered the most wonderful news we were not expecting..... EVERYTHING LOOKS GREAT!!!  We were so elated and shocked!!!! She said the scans looked even better than last time!!! So the plan is to keep on the Zelboraf, and hopefully ride this drug out for a very long time.  He is down at a half dose of this medicine, because the full dose is too toxic.  His kidneys are having some issues possibly from dehydration or toxicity of this medicine.  We are still trying to figure that out.  We are thrilled this is working, and are praying so hard for this to continue working at a half dose for a lot longer than 6-8 months.  It has been 4 months since he started this drug, and we are so happy for the time that we have on it that it works.   Thank you so much for all of your prayers!!! They are working.... even the Dr.'s are completely impressed at how fast and how great it is working on him.   We can breathe again!