Round Two Complete!

Yesterday was really rough for Bennie.  He started off great, and insisted he eat a chicken biscuit from chic-fil-a downstairs.  So I got him one and he ate the whole thing.  His stomach was killing him afterwards, and ended up losing his breakfast right before I ate my lunch.   He was nauseated most of the day, and felt like complete poo.  He was itching and uncomfortable, and the worst was he couldn't get to sleep.  They gave him some Ativan yesterday which really helped him catch some zzzz's.  Then the next dose came a little late, and he got some Demerol which helped his sleeping.  The Dr.'s were concerned about some crackling in his lungs, and ordered some breathing treatments.  Then Bennie said he really wanted dinner, and thought of ordering a pizza and having it delivered to the room.  I of course remembered breakfast, and advised him against that.  He insisted, and I found a Chinese restaurant down the street to get him some fried rice.  I thought that would be way better than pizza.  He did well with dinner, and then got another dose of Ativan to help him sleep.  He went to bed at 8.  I went to bed at 10 after I watched a couple shows.  The Ativan wore off at midnight, and he woke up itching and completely stressed out he couldn't sleep and felt miserable.  So we waited for his next dose.... it didn't arrive until 2:45 am, and his Demerol helped him sleep the rest of the night.  Sleep was very minimal last night.  We woke up this morning, and he had a shower as well as a long walk around the floor.  The Dr. came by and said he wanted to wait for the seventh dose to make sure his morning was going ok.  He did another breathing treatment for his lungs, but the Dr. decided he didn't want to proceed and get into the danger zone.  So he is in recovery mode right now.  We will probably be here through Sunday, and pray his recovery goes smoothly.  I pray his lungs clear up, his fluid goes down, his stomach feels better, and his anxiety subsides.  He is having problems sleeping, and is agitated.  They really can't give him a lot because his blood pressure is low, and they don't want it to go lower.  So... he just took a Xanax and will hopefully sleep for awhile!!!!! He is most pleasant when knocked out, and when he is awake he is grumpy (anyone would be in his condition).  

I will keep everyone updated on his recovery!!!

Sleeping

Bennie has been sleeping a lot, and dose 2 and 3 went pretty good. He started with a fever last night, but Tylenol kicked it out and he got Demerol after each dose. He has started itching again a bit, but so far it's alright. Pretty quiet night here...so we will see what the Dr says in the morning. This time around is going sooooo slow. But I am thankful everything has gone good so far!!!!! Also my amazing friend, Tiffany, sent me an egg crate for my chair, snacks, drinks, her iPad with Friends loaded on it, and it was a nice evening last night. My parents brought up these supplies last night, and also brought me dinner, and it felt like Christmas!!! Bennie didn't eat last night, but I may wake up early and see if I can find something around here for breakfast that isn't hospital food for him. They need a Shipleys or something around here and he'd probably eat! My chair was amazingly comfortable last night!!! I feel like a million bucks. Bennie gets his fourth round at 9am.... Go Bennie!

Bennie 1 Interleukin -0

Dose number 1 went well this morning.  He started getting chilled then he got some Demerol.  He has been doing great today.  He ate breakfast and lunch and napped in between.  He is already starting to get a little red again, and his heart rate is higher than normal.  All these are normal side effects.  No fever yet today, and it seems to be going alright.  But I learned last time things can change in a second... so we are staying on top of the side effects and watching out for anything to combat as soon as it presents itself.  Dose number 2 will be here in one hour.  Hopefully his side effects aren't too bad... and we can manage the ones he has.  The kids are at PawPaw and JuJus tonight, and I believe they are working on building a tree house.  I cant wait to see them soon, and want to send out a special shout out to the grandparents.  We could not do this as easily if the kids were not completely comfortable.  We have NO worries, and know they are having a nice little vacation from their parents.  We communicate by Facetime and Skype, and are thankful for the current technology that allows us to keep in touch.  Wellll... that is all I have for now, and will give a short update this evening after the next dose. 

Prayers needed for Bennie's side effects to be kept at bay, and a pretty easy week ahead for him!!!!!!!!! 

Epiphany

I just had an epiphany!! So when you have a baby and you lay them down in their crib, and you go get them after their nap and they are drenched in sweat....why? I always thought there was something wrong with Colby. Why did he sweat so much? He's sleeping on a vinyl crib mattress! Holy sweat! I sleep on this stupid chair covered in vinyl and I wake up and feel like I ran 10 miles. If you could combine my sweat with Bennies heart rate during this treatment we could have run two marathons!! Anywho... It's a theory I just thought of and it may shed light upon why your babies sweat. Mattress pads and sheets don't help. I'm going to try and find an egg crate foam thing tomorrow. Going back to sleep now so I can sweat some more. It's so gross!! Don't worry I Lysol everything down so if you come to visit and have to sit in this chair you are good! Ha! I can write a book .... The chair chronicles... A series by Janet Lunsford. This could be a new weight loss marketing strategy. need to lose 10 pounds? Sleep on vinyl! Get your vinyl sheet today And sweat off your weight!!! You can thank the lady who woke me up to weigh Bennie at 3:30 am for this lovely random post. Back tomorrow with the treatment chronicles...starring Bennie Lunsford, with cameos from Demerol and Tylenol.

Second Round

Well we are in a room. We unloaded a whole trunk full of belongings which included an Xbox, clothes, snacks, blankets for 10, Hawaii Luau decor, cell phones, laptops, humidifier, and a whole house pretty much. We are both pretty anxious this time around, because the second time is usually a lot worse than the first. We are praying that's not the case, and praying for a quick recovery and easy week!!! That's all I have for now! I will update in the morning, and let you know how dose number 1 goes.

Living

So I haven't updated in a while, because there isn't really anything new to report. Bennie is doing great and is almost 100 percent just in time to get re-admitted tomorrow for round 2. We have had a pretty normal two weeks, and loved every second. Emmi isn't too happy knowing about this next week. However, we have had some blessings develop in the last couple weeks. Rewind back to September..... My parents decided to go to Hawaii for their 30th wedding anniversary. I was giving them a hard time telling them Bennie and I would be turning 30 too. They thought it would be fun for us to go too, and it would be great for us to have a nice trip together. We haven't had an alone trip since we got married.... So we were so excited. We had Bennies 30th birthday party, and it was a Luau theme to celebrate our excitement. My parents had bought our plane tickets, rented a house for two weeks, had all the activities planned, and then January comes. When the Dr. was talking to us about Bennie's cancer treatments the first thing he said was can I still go to Hawaii? In our minds we had completely written off the idea that we could go. Ultimately the Dr.s said yes... They want people to go. When you have a diagnosis like this there are far too many people who fight to live but don't live while they are fighting. So the Dr. encouraged him to keep his plans, and even said they would reschedule anything around it. I was worried about the plane ride, but the Dr reminded me that people fly into Houston from all over the world to get treated at MD Anderson...and have to fly back afterwards. There are hospitals in Hawaii if anything comes up. I have even met a lady whose husband started the same treatment at the same time, and they live and are getting treated in the same town we are visiting. So, hopefully we can meet them when we go. So, before Bennie got diagnosed we were going to go to Hawaii alone, and leave the kids. We were already wondering how we could leave the kids for 7 whole days.... But we have had to leAve them now for 7 days while Bennie was in the hospital, and now for another 7 days next week. There would be no way we could go without them, and so they are coming too!! They are sooooo excited. This will be the first plane ride for Colby, and the first plane ride Bennie and I will go on together. So we are praying so hard next week goes off without a hitch, and we can get outta here!!! We are scheduled to depart two weeks from Monday. I am going to decorate Bennie's hospital room in Hawaiian things to lift his spirits when it gets tough. We couldn't pass up going on this trip.... It's our birthday and Christmas presents from my parents for the next couple of years! Hawaii is not the best place to vacation when you have skin cancer and sensitive skin, but we have to modify our activities and protect his skin with SPF shirts and a touristy hat!!! And Bennie is worried if the cancer does get worse instead of better, he may not be in a condition where he would be able to enjoy it like he feels now. Right now he feels better after a week or so, and he would rather be recovering in Hawaii than the couch at home. So, like the Dr said "if you are going to fight to live....then live!" We are going to live!! When else would we get a paid for vacation to Hawaii... Unless my parents choose not to come back!! I'm glad that my parents are taking us to Hawaii.... They have been to Spain, Germany, half of Europe, California, Pittsburgh, and I'm forgetting some others I didn't get invited to in the last two years. I guess they saved the best for me! Wahoo! My cousins Brandon and Jen are coming too!! They live in Dallas, so we don't get to see much of eachother.

Bennie gets admitted again tomorrow, and most likely will get his first dose on Tuesday morning. We ask for prayers for an uneventful week, and a fast recovery!!!

Thank you, and I will keep you updated daily now. (Also I typed this from my iPhone in a blogger app... So there may be a lot of grammatical errors)

Home sweet home!

We are finally settled in at home, and Bennie is improving each day. The first day we were home Bennie slept a lot, and was still itching very bad. We found that Aveeno oatmeal baths and sarna anti itch lotion seem to work well in helping sooth the skin. The medicines he takes for the itching make him so tired, and he wants so bad to stay awake. He is still really wiped out....but each day he is able to do more and more. We have still been so blessed by so many people supporting us with prayers and meals brought to us each night. It is just so awe-inspiring to us!! We are looking forward to a bit of normalcy for the next several days. Bennie doesn't find my life as a stay at home mom as exciting as his job at work! So as soon as he can stay up for more than a few hours at a time I'm sure he will be racing back to work! Tomorrow
I have to drive him to the satellite office to get some blood work done to make sure everything is still going in the right direction. I know he is starting to go in the right direction, because he is wanting to play Xbox for a bit in the evening. Normal Bennie is emerging!!!

The white flag has officially been waved!

Well... Bennie completed 9 doses of this treatment which was quite a feat. The Dr. Came by and said he looked good, and that if he wanted to do one more he could. Bennie said no way ... If I do one more I will die. I agreed with Bennie ... One more and he would be in for a world of trouble. It was pretty rough, but I was so excited for Bennie to begin his recovery. In my mind I thought that Bennie would be coming off the medicine and start to return to his normal self in a few hours. It then hit me how sick he was when that evening he still was completely out of it, and flat out miserable. His throat was hurting so bad from thrush that is a side effect from treatment. Also, he was itching terribly from the sunburn looking rash all over his body. We tried to get these side effects treated, but as of today he is still suffering and still out of it. Normal Bennie is not back yet, and he has slept for the past two days straight. I was sad because he was a little grumpy, and not his normal self who I missed so much. It is sad when you try to do everything to get the person you love to feel all better, but nothing works. I learned it just takes patience!! He endured one of the toughest cancer treatments out there, and it will take time for him to bounce back. He will be back to Regular Bennie in no time. I am praying tomorrow is better and we are able to get home! Its funny to talk to him, and you think you are having a great conversation.... and look over and he is passed out! I got to go have dinner tonight with the kids while Barney sat at the hospital with Bennie. I loved having some time with them, and miss them sooooooo much!!! They are starting to have a tough time and cried to see daddy when they dropped me back off at the hospital. I promised them we would be coming home soon, and hope tomorrow is the day so bad! Bennie is finally free from all the monitors, and I am hoping we get a good nights rest without all the alarms from the machines going off.

A lot more doses later

Bennie has been a trooper.  Each dose causes Bennie to decline more and more.  He is sleeping most of the day now, and is really kind of in a fog.   Today he has received doses 6, 7, and 8.  We almost had to hold off on some today because his Uvula in the back of his throat swelled up quite large.  It is making him really uncomfortable, and he can barely eat or drink. It caused quite a scare because we were not sure if it was his whole throat swelling, or just that part.  It seems it is a cause from all the fluid retention.  Some people swell up in their legs and hands, but Bennie swells up in his face and Uvula.  He has gained probably about 10 pounds or more from the fluid, and as soon as the doses are finished that will all come off.  One of the side effects is called capillary leak syndrome.  It basically is caused by low blood pressure, and the fluids that are being pumped into him are not able to come out.  So... between his fast heart rate and the swollen throat we almost had to hold off, but he said bring it on and they brought it.  The Dr. will call tonight to see what his stats are, and will determine if we are going to go through with the next dose.   Bennie is ready for the white flag to be waved on this treatment for the week, but he is ready for the next one if need be.  It is so hard to see him look so miserable, and out of it.  Luckily, once all these medications stop they say you bounce back relatively quick?  Hard to imagine that currently, but we shall see.  Thank you so much for everyone who has come together for support for us, and for the prayers.  He reads all of the encouraging posts on Facebook, and we would not be able to get through this if it wasn't for all the people behind us right now.  There have been so many people who have helped us out, and we are tremendously blessed by each and everyone rallying behind us.  We did get a nice surprise today.  The nurse said that kids are able to visit here, and Judy brought them up to visit for awhile before his 8th dose.  We loved that so much.  We have never been away from them for this long, but they are taking it very well.  They were sad to leave the hospital without Daddy, but I think it helped for them to understand where we are.  It was just what we needed to drive us through to the weekend, where hopefully we will get to leave.   PLeeeeaaase let us get out this weekend!!!!!!!!!!!!!!!!!!!!!!!!!!  One day I am going to invent the neatest, and most comfortable fold out chair for guests staying at the hospital.   I am going to corner the market with this chair, and all Fathers who have to stay at the hospital when they have newborns will thank me.  There will be a holiday named after me for the invention of this chair.  I will have a lot of time to invent this chair, as I sit here trying to get comfortable in the current hospital chair. 

Dose 3 and 4

So we are down 4 doses, and there are a max of 10 more he can do.   The number of doses will be determined by how is body is handling each one.  If he shows signs of organ failure or intolerable side effects like hallucinations or inability to eat/drink then they will cut it off.  So far so good.  Last night was a bit rough.  The chills, called rigors, were pretty bad for about an hour.  He shakes uncontrollably until Demerol has a chance to kick in.  He got pretty nauseated and sick last night because they gave him a lot of Demerol and also Diludad to calm the shakes.  After the nausea medicine came he slept the rest of the night.   The Dr. came in this morning and said he looks great, and his blood work looks great as well.  He was not able to have any Tylenol around the clock yesterday because of some blood work issues, but he is able to have it all day today.  Hopefully that will help with the fevers and aches.  Dose number 4 came this morning around 9:30 and we were bound and determined to get the Demerol at just the right exact time to stop the chills in their tracks.  So, I noticed his very first dose his hands felt like ice blocks and then he started with the chills.  I noticed the same thing this morning, so I ran and got the nurse and she dispensed the Demerol.  NO Shakes!!! He slept and was a little out of it, but no fever and no shakes!! So hopefully the next dose we can still stay on top of it, and also the Tylenol will prevent him from the high fevers.  So..... all in all everything is ok.  NO stomach issues today.  He has been eating and drinking fine the whole time.  He is doing great!!!

He loves the encouragement and prayers, and we will update later tonight on the next one.

Dose Number 2

Well the honeymoon is over.  Bennie had a great day today, but about an hour before dose number 2 came he started getting a fever.  Then dose number 2 was administered, and everything just went south from there.  His fever spiked to 103, his blood pressure shot up to 200/90, heart rate was around 150, and he was shaking violently from the chills.  It was scary for awhile.  As soon as he starts getting chills the nurses have Demerol ready, and that will usually help pretty quick.  Since his fever was so high the Demerol didn't really start working for an hour.  Finally they gave him some Tylenol and he is starting to come around again.  He got his xbox connected tonight and seems happy, but he needs to get some rest before Dose number 3 comes at 1 a.m.  Hopefully his fever goes all the way down before that comes.  And hopefully it isn't as bad as last time.  It is really hard on the body shaking like that.  It is scary not knowing what will happen to him from dose to dose.  He seems ok right now... so that is Dose number 2.  Bennie wants me to write all of this down, so the next time he comes in he knows what happened and when to have all the medicines ready.  Whew that was a stressful couple of hours.  Luckily all the nurses here are wonderful and so nice and helpful.  I just ordered Bennie a little bit of dinner, so hopefully he can stomach some of that and get some rest. 

I keep checking on Matt next door, and he has been asleep all day.  I hope he is comfortable. 

Thanks again for all of the prayers!!!

Now here we are:

I never really ever dreamed that three weeks ago we would be sitting here on the 10th floor of MD Anderson, while nurses come in with hazmat suites on dispensing highly toxic chemicals to my husband.   Whatever God's plan is for this certain set of events in our life, we are just trusting him and giving it all to him to take care of.  We know it will be tough, but we know we are not alone.  It is amazing to think that Bennie has stage 4 Melanoma.  He looks fine and feels fine... minus the large growth in his body.  When you look up Melanoma on the internet it is very frightening.  The odds for someone to survive past 5 years with this disease are 5%.  But Bennie is not a statistic, and treatment options for this cancer are improving every year.  Even with this horrible thing that has been placed in our laps the blessings that have been presented to us in these last few weeks are amazing.  One blessing is that even though it is stage 4, we found out that none of the scans showed any metastasis in his organs.  Also, we were able to get everything streamlined pretty quickly to start treatment.  Another blessing is that our children are taken care of so well by all the family that we have.  We have such an amazing family and support system, and that helps so much with us being gone so much.  Our church family is also amazing, and everyone praying for us is just astounding.  Another blessing is that Bennie works for the most amazing company.  He absolutely loves his job!!! The hardest part for him having to go through this is not being able to go to work.  He loves the people there, and he loves what he does.  It is killing him to be in a hospital bed, and not doing what he loves.  We know he will be back soon, and that this will just be a memory in the future.   He is still able to be connected through work with technology, and may confuse some people when he responds to emails while on Demerol.   The side effects of this treatment can be fever, chills, nausea, diarrhea, rash, itching skin, kidney failure, blood pressure issues, and fluid retention.  This is a short list, and the long list of side effects they gave us would make anybody want to try and escape this room before they bring it in. 

Bennie Just had his first dose of the hi-il2:
9:00 am the nurse came in and hooked up the transfusion
9:15 am transfusion complete
9:30 am I stare at him ... he watches a movie
9:45-10:00 He gets really cold and starts shivering... we get the nurse and she gives him Demerol
10:30 he feels better and is watching TV

Pretty good first dose so far... will keep everyone updated... next dose 5pm

P.S.
It's really weird... a friend of ours from church that we have known since high school at church has the same diagnosis.  He just moved down here from Virginia and was starting at MD Anderson for treatment as well.  It just so happened that he started the same day, and he is right next door.  He is in room 1 and Bennie is in room 2.  Such a small world, and so that means I can take care of two people!  I just went and checked on Matt, and he was asleep.  He looks like he is having a rough time over there.  I will go by in a little while and check back up on him.  He is receiving a different treatment that Bennie.  That's all for now!

In the Beginning

Here is where it all began.....

November 2005:
Bennie has a mole removed from his left arm, and it is determined it is a Clarks level 3, 0.98mm malignant melanoma.(stage IIA Melanoma)  After surgery at MD Anderson and a Sentinel Lymph Node Biopsy everything comes back clear.  We follow up at MD Anderson over the next 5 years for check ups, and everything is great.  We follow up with a dermatologist after 5 years of being cancer free. 

January 6th 2013:
Bennie wakes up before church and tells me that Colby has got to sleep in his own bed from now on.  He thinks that Colby is kicking him in the side at night, and is causing his hip to hurt.  He then feels a bump and blames it on Colby.

January 10th 2013:
Before bedtime Bennie shows me the bump on his hip, and it is noticeably larger.  I freak out over the size of this thing, about the size of a softball, and surf the internet all night looking for answers.  The only answer I could come up with was cancer.  I was already sad, and I cried that morning to him.  In my heart I knew.  He said he would give it a couple weeks, and then go see a Dr. if it didn't get any better.  Well... I got him in to see a Dr. that next week, and after a MRI he was sent back to MD Anderson.

January 22, 2013
We end up at MD Anderson, and run through a battery of test in 2 days.  He gets a CT Scan of chest/abdomen/pelvis, MRI Brain, and biopsies on his hip tumor and also one on his shoulder.

January 31, 2013
Bennie has surgery to remove a tumor on his shoulder.  They remove the tumor to harvest the Tumor Infiltrating Lymphocytes for a future treatment possibility.  It is a rough treatment so hopefully we do not have to go that route.  But it is available if need be, and it does have better odds than the first treatment we will be starting.  The first treatment we will be starting is HI dose of Interleukin 2.  He will be in the hospital for one week, and every 8 hours he will be given a 15 minute infusion.  The side effects can be really rough, and it feels like you have the worst flu ever.  Luckily, supposedly after you finish the infusions you feel better.  The chances of this treatment working for a complete response or cure is 6%, and the chances for it helping to keep it stable are about 10-15%.  Not really great odds, but it is the best they have right now.  The TIL treatment is not an option right now because they have to grow those cells from the tumor, and it takes about 5-8 weeks for them to grow.  We do not have that kind of time to wait around, because melanoma is a very aggressive and fast spreading cancer.  WE know that because of the tennis ball or larger size tumor on his hip.