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!

Zelbor-off it for now

So Bennie had his monthly check up at MD Anderson this week, and it just so happened to have fallen on our 8th wedding anniversary.  At least we got to be together the whole day!  We are pros now at making any situation fun and enjoyable!  So he had his blood work, EKG, and his Dr. Appt.  MD Anderson is always full of surprises.  If you have an idea of how you think things will go.... It will always be the opposite.  Everytime.  So basically his blood work was a little off, and he has been having a lot of different side effects pop up in the last couple of weeks.   Some side effects have been painful joints, skin toxicity like acne and sunburns, fatigue, and elevated creatine. They decided to hold off the Zelboraf for a week, and then after they retest to make sure his levels are normal again, restart him at a lowered dose.  Most likely the dose he was on is just too toxic for him, and hopefully the lowered dosage will continue to work just as well.  Also, hoping he can restart next week and nothing happens this week while he is off of the pill.  It's scary when you think back at how quickly the tumors shrunk.... So hoping they don't regrow that fast.  We will keep everyone updated on the development of this story, and the upcoming scans in about 2 weeks!  We ended the day having a nice dinner out at the Steamboat House. It was an interesting  restaurant with a lot of Texas history, and a good steak.  We are so thankful for these past 8 years we have been married (almost 15 years since we started dating at the age of 15) and are looking forward to many many more!!!  

Happy, Happy, Happy

Friday before Memorial Day we were at MD Anderson getting Bennie's scans done to see how the Zelboraf is working.  This was our first scans since starting the Zelboraf so we were very anxious.  We knew that the tumor on his hip had shrunk, but we were unsure of how the lungs, liver, and bone mets were doing.  We were forced to wait the entire weekend, plus Memorial Day before we could find out results.  We kept busy by having a very nice weekend and enjoyed our time as best we could!  Tuesday morning we went to MD Anderson and got the fantastic results that Zelboraf is working magnificently!!!! Pretty much everything that were on the last scans were hardly visible, except for a spot on his liver, and some of the bone met on his hip.  The grapefruit (or larger) sized tumor on his hip almost completely disappeared.  The Dr.'s were very pleased and didn't suggest doing biochemo because of his fantastic response.  Before going into this appointment Bennie and I had decided that if there was any measurable disease on the scans that we would attempt to try and get into a very promising clinical trial going on at Sloan Kettering in New York.  It is the most promising treatment occurring in the melanoma world right now, and has the best chance for a long term response.  However, since there is no measurable disease at this time... we can't get into any trials.  So our decision was clear that we will just keep on keeping on with this drug, and hope that the response is a lot longer than the average life span of this drug which is around 6-8 months. 

We were so relieved to hear this news.  In other exciting news for the melanoma world two new drugs for the treatment of melanoma were approved by the FDA today!  One drug could potentially be added to Bennie's current drug to help with resistance, but really hasn't been tested with it.  Also, it would have to get approval from insurance being a new drug.... and without insurance its about 8000 dollars a month!  The quicker melanoma patients are given more options the better, because this cancer is nasty and takes people so quickly.  The one we are most anxious about is Anti-PD1 and is about one to two years away from FDA approval.  So hopefully the drug Bennie is on now can keep working until more treatments are approved, and researchers know more information on the best way to attack melanoma!

We couldn't have had a better visit yesterday, and are very happy to have good scans as well as confidence for moving forward in our current treatment.  We will be back at MD Anderson in about 8 weeks for more scans, and probably a little before that for blood work. 

At least the summer should be relatively "normal" around here, minus Bennie looking like he is dressed for winter as he is hiding from the sun!  Thank you for everyone's continued prayers!  We are still praying for Bennie to continue to respond super to this medication, and his cancer will be gone!  In the words of Phil Robertson... we are Happy, Happy, Happy!!!