Latest Update...

It has taken me a little while to come to terms with our latest doctors appointment.  We went to Dr. A (dad's oncologist) a few weeks ago and the news was not great.  As far as dad's scans and blood work, the cancer has not spread to his other organs, bones, or blood.  That information was great, but the overall visit was not so great. 

Dr. A asked me to go into the hallway, wanted to ask me about dad's meds, but when we got into the hallway, he told me that it didn't look good.  The headaches are coming more often and the continuous decline with the use of his right side are not good signs.  He told me that I should call in my siblings (thanks mom and dad...sure could have used one about now) and prepare.  Billy and I decided we did not want to share this information with dad, so if you speak with him, please respect our wishes.  Of course he "thinks" he knows, but we would rather him enjoy his time instead of worrying.

Hospice has been called in now...we have an aid 3 days a week, a nurse 1 day a week and a social worker once a month.  Dad has run everyone off before that we had come in, but he has met his match this time and they aren't going anywhere...I love it!!!  Dad has his good and bad days so to look at him sometimes, you would not be able to see what the doctor was seeing.  It is so sad to see the decline this awful disease has caused in just a little about 10 months.  An independent man, who loved to be active in the garden, in the garage, and free to do what he wanted has now been reduced to a man in a hover round who has to have help doing most things, can't walk, and has lost his independence.  I hate this disease, it infuriates me...I just get so angry sometimes that I can't fix this, make it better and take care of the problem. 

Dad has been so strong, he still has his sense of humor and that has helped us all.  He laughs and makes jokes about things, he says he isn't going to sit around and cry that he is going to make the best out of the time he has, but lately he has been making more of those "when I am gone" comments.  He told me the other night that he never wanted me to forget him...like that would ever happen.  For Christmas he gave me a willow tree father and daughter statue...he told me he always wanted me to keep it and remember him. 

We go back to Dr. A on Thursday...they are going to let us know if we are going to keep on with the chemo and if so, at what dose.  It seems to be making him sick and not making any difference.  We are also hoping they are going to order a CT of his head.  We know as of November 5th, his frontal lobe was swollen and that he had 5 masses in his head...just wondering what it looks like now.  I will keep everyone updated.

Over the past 10 1/2 months, I have come to learn the importance of the "small" things and to live each day to it's fullest.  During Christmas I found that the gifts were not what was important, but the fact of being with family, having my dad here...that was what was and is important.  A few months back I bought dad a book that had all kinds of questions in it...things about his childhood, school days, and adult life.  Well with the decline of his right side, he can't write in his book.  Because of this, my amazing honey bought me a flip cam for Christmas so I can record dad's answers.  I'll be sure to share some of those when I get them uploaded. 

Thank you all for your thoughts and prayers...

Been a while...

Well since my birthday weekend, dad has had his ups and downs.  Dad had a chest, abdomin, and pelvis scan over a week ago and we find out the results this coming Thursday.  Neither one of us have wanted to call and find out the results so we are patiently waiting for Thursday.  Dad's theory is "no news or good news."  I"ll post more when we know.

Weekend Recap...

So about 4:30am Friday, dad woke up unable to breath or catch his breath.  Billy was in Charlotte at training so I called him.  Mom and I were unsure what to do.  When the ambulance show up, they were wonderful.  They took dad on in to the hospital to check him out. 

The doctor said many times specialist only look at what they specialized, and he was concerned with dads leg and the swelling so he wanted to check for blood clots.  Thank goodness he did.  He found that dad had multiple clots in each lung and some in his right leg.  He decided to admit dad. 

Dad was admitted and mom and I came home to finally get dressed...lol.  Billy came in late that night and I think that made dad very happy.  He loves us all, but he says Billy understands the doctors better...lol 

They started dad on blood thinner shots, got him feeling a little better and sent him home on Saturday.  He slept a lot yesterday, but he seemed to be feeling much better this morning.  As the day has gone on, his breathing has gotten a bit tougher for him. 

Please keep him in your thoughts and prayers...

The past few days...

So the past few days have been pretty rough...Tuesday night we were up every 2 hours with dad having seizures.  They seem to be getting more intense and more frequent.  We went to Dr. Weise on Wednesday and she added another seizure med to to dads daily dose. 

Billy is in Charlotte and my mom has come to help me out.  Thank god for wonderful family members who are willing to come help out every month. 

We are having a BBQ this weekend for my birthday.  Dad was persistent that we celebrate and I was hoping for something quiet.  I know he isn't up to it, physically or mentally, and I can't say that I am either.  I focus on him so much that I'm afraid I won't enjoy myself.  Oh well...if it makes him happy, that is all that matters. 

Round 3...1 day down, 4 more to go...

So dad had an okay night last night.  He got a bit sick on his stomach and thought he was grabbing his zophran, but he was grabbing his ativan.  Bless his heart...he finally turned on the light, realized what he was doing, and finally got some rest.
 

Round 3

Round 3 of Chemo starts tomorrow night.  THis is how we get his prescription of Temodar.  It comes pre-packaged out into 5 days.  Next month his dose is going up from 550 to 570.

Dad read somewhere that Lemonade/Lemon Candy helps with the Chemo so we went and bought all kinds of lemon stuff.  Dr. Aganost was also so nice to provide us with Zophran too!!

He is already losing his hair from this last round of radiation and he feels that his leg has gotten worse.  I feel so bad...I wish I could take it from him.  We go back to Dr. Nichols this week to talk about what's next.  Dr. Aganost wants a PET scan in 4 weeks to see if the cancer is in other parts of his body...dad is dreading that...he really doesn't want to know.  He said what he doesn't know..then he doesn't have to worry about.  Dad is getting tired...he breaks down at times and says this isn't how he thought things would be at 58.  In a given week, he takes over 200 pils. 



Dad's Extra Steriods - he has a total of 4 a day!



Dad's Weekly Meds

Memories...

Dad wanted me to write tonight and let everyone know that his short term memory is shot.  He has times when he doesn't remember what type of cancer he has, different peoples names, or common everyday things.  He does miss talking to everyone on Facebook but radiation has taken a toll on him.   They told him today that he would probably start losing his hair next week, but as you can see from his pictures, we are keeping it short anyway. 

Dad's New Rides

Dad's "new" ride!  He needs a lot of practice though before he can get his license...he is dangerous!!! lol

It's her world, we just live in it.  She thinks now whatever her granddaddy has, is hers.

Little Bit of Good News...

So I called Biologics yesterday about the bill they had sent.  I told them I was really worried because we had never received anything saying dad had a copay.  The lady on the phone said "Oh, he has CancerCare, he shouldn't have gotten a bill, just disreguard that"...what a relief!!

Too good to be true...

1st off...we were under the impression that Biologics was going to pay for dad's Chemo for a year.  They sent us a letter, said we were approved, and never mentioned a copay.  Well we got a bill this past Saturday and they want dad to pay over $1000.00 for his copay.  I'm not sure what we are going to do...I am going to have to call them tomorrow and see what is going on,

2nd...dad had been 2 weeks without any seizures...we just knew his medication and steriod were working, but last night he had a seizure.  It was a mild one, but it is still scary for dad.  His doctor has ssaid to give him ativan when he is having them, but he is unable to take the medicine, drink, and have a seizure at the same time.

3rd...We were hoping dad was only going to have 5 sessions of radiation...bless his heart, dad used to be the cooker in the house, the one who did all the things in the kitchen, and this past weekend, he had to ask me how many scoops it took to make lemonade.  This wouldn't be so bad, but he was the one that taught us how many scoops it too.  So he found out today that he is going to have 5 more doses, totaling 10 doses of whole brain radiation. 

UGH....

I think I am ready to share...

So we went to the doctor's last Tuesday and I have been trying to figure out if I could even update dad's blog...I've cried, gotten angry, and cried some more...but I keep that from dad, I don't want him to see me upset.  Billy had class in Charlotte last Tuesday through Saturday so I called in for help and my wonderful stepmom came to help.  She took such good care of my dad...we hated to see her go home yesterday. 

Tuesday we went to Dr. Nichol's, one of dad's oncologist, and got the results from his latest MRI.  The 4 original spots in dad's brain have not stopped growing.  Since Melanoma is one of the only cancer's that doesn't take to radiation and chemo, the treatments seem to just piss off the cancer and the cancer grows.  He also has a new spot on the "balance" part of his brain...which really makes since with all his falling. 

They started "Whole Brain" radiation last Wednesday.  Dr. Nichol's says that this is a much "softer" dose of radiation than dad has had before.  We have been told that it will not help any of the spots that are already there, it may even kill some of the parts that have already been radiated, but the hope is that it will keep any new spots from growing.  Dad is having 5 days of radiation, but that could change to 10 days depending on what the doctor decides.  His headaches are coming back, but with the help of Tylenol, they are being contained. and the tiredness is also coming back.  These are too be expected with the radiation. 

They have raised dad's steriod from 2 times a day to 4 times a day.  This is to help the swelling in his brain.  I told the doctor I was doing good to get 2 in him a day but dad has done a great job making sure he takes the other 2...plus Billy told him he would put Gracie's, our dogs, shock collar on him if he didn't...lol.  We have to make jokes and laugh are we would cry all the time. 

Please keep dad in your thoughts and prayers...

2nd Round of Chemo: Night 1

Well it is 2:27am and we have been up for about an hour.  We thought this dose would be as easy as the first, but dad's doctor didn't give him Zophran this time and he has been sick and throwing up.  Neither one of us like to throw up, but who does, so I am sitting up with him.  I went to go to bed about half an hour ago and he started getting sick and wanted me.  Dad takes a nightly phenergan with his routine meds, but I gave him another one when we first got up...but that didn't stay down so I am hoping the 2nd one will.  So far, so good. 
I feel so bad for him...I want to take this sickness away...I will definitely call the doctors in the morning and get them to call in a prescription for Zophran. 

On the bright side...if you can actually say there is a bright side to cancer...dad did get his new walker this week...a big boy walker...woo hoo...thank you so much mom!!!  Plus he got his new wheel chair...he said he was practicing his wheelies the other day...I sure hope he was joking.  I'll have to post pictures soon...

Well I'm going to try going to bed again...5:30 comes early but I hate to leave him up sick.  CANCER SUCKS!!

Handicap Proofing...

So this weekend dad had a few seizures...they aren't as intense as they used to be, but they are staying in his chest now.  He says it feels like he is having a heart attack.  900mg of one seizure med and 400mg of another a day and he is still having seizures...I just wish they would go away.

Tonight I had class and I knew that meant dad would be home for about an hour by himself.  I called around 7:50 when I was on my way home, asked about his day and asked if he had fallen.  He said he had had a good day and told me what he wanted to eat.  When I got home, one of billy's trucks were here.  I just assumed it was billy, but come to find out it was brent.  Dad had fallen, broken the coffee table and called billy for help.  He wasn't close so he sent brent.  THANK YOU BRENT!!  He came to dad's rescue, helped him up, and moved the table out of his way. 

I am so stressed every time I leave the house and I know dad is by himself....

Stressed to the max...

Okay...so I can see that it has been quite a while since I have updated dad's blog...I'm very sorry to all of his friends and followers.

Well since the middle of August, dad has completed his first round of Temodar.  So far, so good...thank goodness.  He didn't get sick one time...and he still has hair..although it needs cutting.  Dad was also approved through the CancerCares program to have his Temodar for a year.  I could just kiss them!

We went back to the Chemotherapist last week and since dad did so good, they are raising his chemo from 435 mg to 550mg.  Now we have to wait and see if the company will approve the new dose...1 step forward and 2 steps back.  Hopefully they will...if not, I'm not really sure what we will do. 

Dad has started falling since his chemo...I have found him a couple of times in the floor in his room and once in the kitchen.  After that started, I called the doctors to see if we could get some in home help...dad has OT, PT and a nurse coming in now during the week.  He went today to get fitted for an AFO (Ankle Foot Orthoses.  Hopefully that will help with his control on of his right foot. 

We don't leave home now without his walker and wheelchair.  I am so proud of him for realizing he needed them.  He is a fighter and when I called for the in home help, he was mad at me.  I have a white board on his door that lets him know the day and where billy and I are.  His short term memory is shot so I thought this would help.  He also got a new toilet put in this weekend.  It is one that hopefully is taller for him.  We are looking at rails for the house too. 

Now if I can just get him on a schedule where he sleeps at night.  He was up and down all last night.  Ever time I hear him up, I get worried if he needs help or if he is going to fall.  I was fussing at him this morning at 3:00am...I feel awful for doing it, but he was trying to get something to drink and knew he couldn't carry his glass back to his room.  I desperately need a nap today.  I have started packing him a lunch box at night, but last night he said he had everything he needed.  I try and help him limit his wandering during the night, but I know he wants to get up and do his own thing...CANCER SUCKS!!

In the past week...

Sorry for all Dad's followers for being slack...in the midst of everything else we have had going on this summer...I had two birthmarks removed last week.  The doctor said that they may never become anything, but with the family history now, he would rather be safe than sorry.  So now,  I get to be a weeble wobble like dad...like father like daughter...and when these heal, they will go back in on one leg and get the rest.

So for dad...

• we have put his car in my name and proved to DSS that he no longer has ANYTHING to his name.  Now we are playing the waiting game to see if we can get any help from DSS for dad's Temodar. 
• we have started to see a NEW doctor...go figure...a Neurologist, Dr. Wiese.  She is not happy with dad's dilantin level at all.  She said she had never seen someone on a level like dads.  She has now prescribed Vimpat for dad.
• but...dad's insurance wants prior approval from Dr. Wiese for the medicine she has prescribed so until that goes through, his medicine is $1046.00 for one month.  Luckily, she gave us a 14-day free trial that we only really last 11 days in the hopes we can get all the prior approval stuff straight.
• In the mean time, we have applied to 2 different foundations for help with dad's med's.  I faxed the paper work last week, mailed a copy, and made a copy incase I need to "remind" them in a few weeks if we don't hear anything.
• Dad and Billy went to the VA today.  Dad did 12 years in the National Guard many years ago.  They would help him buy a house, but no help there with his drugs.  The guy there did however get us another contact for some help, so I will be calling them tomorrow.

With all this going on...Billy's old shift became dad's MIRACLE tonight.  Thanks to the wonderful people on that shift, dad will be going to get his first dose of Temodar tomorrow.  I will never be able to repay them for their generosity, but please know that the 3 of us, THANK YOU from the bottom of our hearts...and a special thank you to Connor!!  He turned 8 this past weekend and shared his birthday money with dad so he could get his medicines. 

The trials of Cancer...

Well today we accomplished a lot. 

Yesterday we started the process at DSS only to find out that dad's car was worth $100.00 more than he was alotted to have in assests.  So today, we had to transfer his car into my name, take info back to DSS, and now hopefully he can get processed through for Medicaid. 

Next, we got all his info filled out for CancerCare so hopefully he can get some support for Temodar.  We are going to fax and mail the forms tomorrow.  So now we just wait.

With this disease...you have to either be very rich or very poor.  People who are middle class, who have worked hard all their life, have the hardest time getting any help.  UGH...it is very frustrating!!

This weekend...

This weekend has been kinda rough for dad...the two times Billy and I have left the house on Friday and then Saturday, dad has had a seizure.  I hate that he was home alone because they scare him so bad.  Earlier he asked if we were leaving so he could get prepared since they liked to come when we were gone. 

We have a very busy week...
Monday, doctors appointment with his family doctor
Wednesday, doctors appointment with a neurologist...this will be our first visit to her
Thursday, doctors appointment with the brain surgeon

Hopefully tomorrow we will get dad's paperwork for his chemo drug!!

Cancer Meds...

So how can the people who make these medicines sleep at night?  The first time I went to pick up dad's meds yesterday, they wanted over $4000.00.  I about lost it in Walmart.  They said they needed to do some checking and when I went back later it wasn't much better.  For 1 week of meds, they had come to a little over $800.00.  How do these companies feel that people can pay that much.  Dad can't pay that each month for a week of meds...it's outrageous. 

I called dad's chemo doctor and talked to the nurse.  She is sending dad's information to some drug company in Raleigh.  Hopefully they will be able to come up with something.  Dad's feeling is that you have to be rich to survive cancer...and if you can pay the price, that's true.  Ugh...

Chemotherapy

Went to Dr. Anagnost today...If all goes well with dad's MRI tonight @ 8:45, Dad will start Temodar on Thursday.  If the MRI shows anymore brain lesions, chemo will be held up for a bit.

He will take Temodar 5 days and be off for 4 weeks.  Hopefully with the help of Zofran and Phenergan, the side effect of throwing up will be limited. 

For the first time today, Dad's Cancer was stated as "Stage 4" and yesterday the doctor said his record stated he had "Progressive Brain Disease."  I had never heard dad's diagnosis like this, but it does make sense with the reaccurances of the brain lesions....not that it makes me feel any better.  It is so hard to hear this about your 58 year "young" dad.  I want many more years with him...I want to see him grow old...to walk me down the aisle one day...I want him to be able to enjoy some grandkids..and most of all, I want him to enjoy life! 

This disease is awful...since February it has robbed dad of his independence, his abilitiy to drive, to get up and feel good, to do the things he wants to do.  He has been a trooper though, making jokes when he can, helping billy with the boat...billy has been so good to both of us.  It is a lot to ask of him to take on this situation, but I know he loves dad as much as I do...I feel so lucky to have had this summer to spend with my boys.

Surgery Day...

Dad has just gone back to get ready.  Hopefully we will get to see him in about 45 minutes....I'll keep everyone updated...

Keep your fingers crossed...NO SEIZURES TODAY!!!

Keep your fingers crossed...NO SEIZURES TODAY!!! 

They have raised dad's steriod from 2 times a day, to 3 times a day.  Dr. McGuire decided that dad needed to have his MRI before the 13th, so he is now having a MRI on Tuesday NIGHT at 8:45pm.  WOW

Surgery is set for Monday at 7:15...we have to be at the hospital at 5:30...and hopefully dad will be home by lunch time. 

Please feel free to write messages to him on here or on his facebook.  He checks both daily!

And Another....

Well about 12:40 last night, dad had a 3rd seizure.  I have no idea what is going on.  I have spent the last few minutes calling his different doctors to see what is going on. 

Dr. Brown is out of town so they are waiting on the doctors that is helping him this week to see if they are going to add another medicine to dad's collection.

Dr. McGuire's office is going to call me back about dad's medicines and his upcoming MRI.  Right now it is scheduled for August 13th...but we are waiting to see if they are going to move it up. 

GEEZ...I HATE CANCER!!

Today ended like it began...

Well this has definitely been a first.  For one, until today, dad had never had a seizure during the day and to add to his day, he had a second seizure tonight.  The second one lasted about 2 1/2 minutes and it scares us all to death.  Dad had a hard time breathing after the last one.  Billy had to remind him to take slow deep breathes. 

Tomorrow he is supposed to have his pre-op stuff and I want them to check his dilantin level.  With all the drugs he is on, you would think the seizures would be under control by now.  It takes so much out of dad after he has a seizure.

I know I have said this already...but I HATE CANCER and what it does to people!

What a way to wake up...

So dad started out this morning with a seizure.  He was in the bathroom when it started and he quickly got to the living room so he could lay down.  I hate these seizures.  They twist dad's body all up and then leave him without the use of his right leg.  They also drain him of any energy.  When I got up he had already had his seizure...but he was trying to drag his foot from couch to couch trying to get to the kitchen.  He is tired of these seizures too...they seem to get stronger and stronger and make him weaker and weaker...I HATE THIS DISEASE and what it has done to him!!!

Surgery...

So surgery has been set for Monday morning.  We have to go Friday and do dad's pre-op stuff to get him ready.  Surgery is going to be outpatient...dad hopes to be home around noon...lol

Happy Birthday Dad!

We went to see Dr. Kotwall, the surgeon, today.  He loves dads humor towards this disease.  I am now waiting to hear from them as to when dad's surgery will be.  The plan is for later this or the first part of next week.

I'll post when I know more.

Monday down...bring on Tuesday

So dad had a doctor's appointment today with Dr. McGuire.  He let the doctor know about his horrible headaches and his leg pain.  The headaches concerned him so he is having dad have another MRI to see if anything else is there.  Dr. McGuire prescribed a different pain med for his headaches...so we will get that tomorrow and see if it works any better. 

Tomorrow...Dad's Birthday...we go to Dr. Kotwall...hopefully will find out when his surgery is. 

Tired

Well since dad's last radiation...he has been extremely tired. He does a little bit and then has to rest. We had been told that the radiation could wipe him out from 6 weeks to 12 months. I hate to see him like this...I hate to see him so tired. The doctors have also given him Adivan to help with the seizures...and that makes him sleepy too.

This coming week is going to be busy again with doctors appointments. We go to see Dr. McGuire on Monday, dad's radiation doctor, and then we go to Dr. Kotwall, dad's surgeon, on Tuesday. Hopefully we will find out on Tuesday when dad will have his next surgery.

My Boys

Well I am at Teacher Academy and my boys didn't tell me dad had a doctors appointment. Dad thought I would come home instead of staying here in Greenville. I'll have to talk to them about being sneaky when I get home...lol

However, dad went to see Dr. Anagnost (Chemotherapist) today. He is sending dad back over to the Surgeon to have the spots in his chest removed. So we are off to see Dr. Kotwall next Tuesday, Dad's Birthday!

Dr. Anagnost is going to give dad chemotherapy. Once he is done with surgery on his breast and stomach, he will have chemo. Chemo will be in a pill form that dad will take for 5 days, be off 4 weeks, and then back on for 5 days.

This is all the info I have right now since I wasn't allowed to go to the appointment...when I find out more, I'll post more...

Since February

Life has changed dramatically since February. Dad was self-sufficent and could do anything in the world, but that all changed when he had his seizure. Since then, he has had a spot removed from his brain, a melanoma removed off his back, had radiation 3 different times, now has 3 new spots in his brain, 1 spot in his breast, and 2 by his belly button...and he is no longer driving. Dad has a rotation of 9 doctors that we now see either monthly or every 3 months. Along with his doctors, he also has a PET Scan and MRI every 3 months.

I hate this disease...it can hide out and appear when it wants! This awful disease has walked in and taken his freedom, his ability to drive, and be self-sufficent. He now has to take 2 handfuls of medicines a day, tell someone when he wants to go somewhere, and his house bound if no one is home or able to take him. I feel so bad...I want to hurt this disease like it has hurt our family. But at the same time, I feel so lucky. Lucky to have Billy, our families, wonderful friends, and a network of people ready to help if I need it.