Seems Like I Just Wrote A Blog Like This...

about 2 months ago. Mom's chemo is not working. Her cancer is still growing. I took her to Bloomington yesterday to have her chemo treatment & the doctor wanted to see her. I knew right then & there that the chemo wasn't working. She wasn't supposed to see the doctor. Not yesterday. Her Chemo was cancelled for yesterday and instead she starts a 3 chemo cocktail. It will last all day. The side effects are supposed to be less than what the Red Devil was. I'm wondering if no side effects mean-the chemo isn't working. Right now this is our best guess.

Tomorrow I am to have mom in Bloomington by 10 am. She will go in & get her blood drawn. Then she will sit down to start her Avastin, Taxotere, & Cisplatin cocktail. It will take up most of the day. She doesn't want me sitting there through it all. I feel like I need to. Luckily, or not, for me, last Wednesday night as I was making dinner I decided to slice my thumb and take a tour of the ER. I'm ok but since I have stitches I am out of work until Monday. This makes me available to take my mom. A blessing in disguise perhaps.

Moving on to my dad, he's doing ok. I just got back from their house a little bit ago & he looked really good. I told him as such too! He thinks that this medicine IS working but that he needs to be on a higher dose. It was nice to see him smile, talk, stand, and walk with little difficulty! Definitely a blessing!

This is all for now. I don't know how much sleep I'll get tonight. My mind kind of wanders a lot when mom starts a new chemo.

Prayers are appreciated.

Dad Looks GOOD! HE LOOKS GOOD!

I went to the folks' house yesterday after work and dad looked pretty good. He wasn't all leaned over in his hunched position like normal. I stayed for just a little bit since my head was throbbing! (Yay for weather headaches!)

I talked to mom for a little bit & dad had taken 1 of his 3 doses that day of his meds for Parkinson's. (I REALLY need to get the name of that stuff!) 

She texted me about 520 to see if I was coming over for our evening chat time. My alarm went off at 530 because I was trying to sleep my headache off. It worked! Anyhow. I picked the babies up from Boys & Girls Club & then we went to Grandma & Papa's to hang out. By the time we got there he had taken ALL of his doses for the day. He was sitting UPRIGHT!, He had COLOR!, He looked GOOD!. While I was back in the office talking to mom, dad came back & was talking. There was NO stutter! He didn't have to STOP & THINK! OMG! It was AMAZING!!! 

Then I looked at his hand.. Obviously I've been all over google & then some researching Parkinson's. I was watching dad's hands. On his left hand he was rubbing his thumb & forefinger together. I got loud because I was waiting to see it again! It's a TREMOR!! Those are TREMORS!!! It's called "pill rolling". Dad didn't even realize that he was doing it!!! He rubs his thumb & forefinger in a circular motion. 

As I was talking to mom, I said, "As soon as I get home I'll google it & tell you." I've noticed the 'pill rolling' with dad many times. I thought that he was doing it to keep his hands from getting stiff. He had NO CLUE that he was doing it!

Dad was filled with Piss N Vinegar last night. He hasn't been that way in MONTHS! He told mom that he hadn't felt as good as what he did yesterday evening in a couple of months! I HOPE this keeps up!! I hope this medicine works!! I hope it KEEPS working! I hope dad hits the ground RUNNING now!! He didn't stumble to the office, he WALKED! HE WALKED! His normal stride!! The one that as a child I could never keep up with & now as an adult I STILL can't keep up! LOL!

Way to go Dad!! We're SO proud of you!!! 

I pray that this keeps up. I pray that dad's ok now. I know it'll get worse but for now, this is all we could ask for! Dad says that he wants to be back to work in a couple of weeks if he keeps feeling this good! YAY! 

Prayers are answered I hope! ~Lisa

Dad's Appointment Yesterday.

Dear State Farm Agent, Can I get A NEW NEURO?!?! K? Thanks! No really, we need a new one. Dr. Li is disagreeing with Dr. Sibleys assessment & said just as much. She doesn't agree with him because she doesn't believe that this is neurological, she's still backing the whole stress & depression crap. Dr. Sibley questioned about doing a spinal tap on dad & Dr. Li, shot it down saying it was too invasive. I get that it's invasive. I get that it's going to hurt like a sonofabitch. I also realize that if I could do it for him I would. If it rules out, adds in a possible diagnosis then do it.

In the end Dr. Li rx'ed him meds for Parkinson's. He is to take a 1/2 a med 3 x's a day for a week & then a whole med 3x's a day for a week and see how it works. Obviously if it works he keeps it up! As she was writing the rx out she reiterated how she didn't think this would help and was only doing this for Sibley. She wants to see him back on June 6th @ 8:30 am. We're to the point where we want dad better. We want him to have a CLEAR diagnosis & not the bs stress/depression diagnosis.

Dear God, Please let the Parkinson's meds work. I think dad just wants something to show that he's not 'losing' it. God, Our biggest fear is that we'll get a final diagnosis from his autopsy. We don't want that. We don't want to lose him not now, not ever. He obviously still wants to live & is still fighting because he goes to these appointments, he shows them his ailments. They throw back on Depression & Stress b/c they can't figure it out. God, Am begging you, fix him. Make him ok. Any type of diagnosis, so we have a name, we have something to go on. Please give him the strength to keep fighting. Amen.

Mom had Chemo yesterday & saw her doctor as well. She cracks me up....She asked Dr. Sriratna if she had to "Drink that stuff that makes her want to PUKE!" LOL!! Dr. Sriratna laughed. He said, "No, you don't have to drink the stuff this time." It was pretty comical. He was Mr. serious until she said "Makes me want to puke!" Then he laughed.

Mom mentioned that she had to up her oxygen. He said, "You'll be ok."You could see the disappointment in his eyes when she said that she had to up it. He asked when would she go see Dr. Burr (lung dr) again & they are filled for May so when they start scheduling for June she'll get an appointment then.

Mom & I have the same fear that her chemo isn't working. If it was she wouldn't have to up her oxygen right? She would have more side effects right? I am hoping & praying that I'm wrong.. I want it to work, I NEED it to work. Not only for her but for me. Selfish huh?

Moving on...I took pictures of dad & I together at his appointment yesterday. One of the few times he actually wears a shirt. I need the pictures with him. I also took pictures of Dr. Sriratna and mom together. I took pictures of mom & I together. I took pictures of mom & the nurse together. My folks probably hate me for always taking pictures but one day, I won't be able to take pictures. Not of them. I digress.

This is the latest update. (My D button just does NOT want to cooperate!) We are doing Relay For Life, Linda's Fan Club Feel free to DONATE or BE THERE! If nothing else to stand along the side lines & give hugs! :D LOL! Nothing's better than a sweaty hug at the end of June! :P

I think this is the latest! ~Lisa

All About Mom & Best Friends!!!

So I have a best friend. Her name is Shannon. I got a text yesterday, "Hey we're doing walk for a cure, you wanna do it?" I replied, "YES!" I was driving, Yes I know shame on me. Anyhow, I called her a bit later & said, "Am only walking if we have a cool team name!" I said, "Do you have any ideas?" She said, "Walkin for Linda." It hit me.. they weren't just walking, they were walking for MY MOM! Whoa.. I didn't even act shocked although I was. I think it just took me by surprise. LOL! I said how about, "Linda's Fan Club!" she liked that better. At some point and time today I'm going over to her house & setting up our team. There's about 20 people on it right now. 

Obviously this is a post to get more walkers with us! If you want to walk, let me know. If you want to donate because you can't be there, let me know! In a few days we'll have a page up so you can direct-donate to the cause. The cause that has kept my mom alive this long. The cause that has kept my babies with their grandparents for another year, another month, another day. 

My mom IS doing the Survivor walk on June 24th. It's at 7 pm. If you want more information so you can come out & cheer her on that'd be great!! If you don't want to walk/can't walk but want to be there let us know! We'd love to see you!! 

For more information contact me. Thanks!! ~Lisa 

Parkinson's.

We saw Dr. Sibley, I'm unsure if that's how you spell his name. Anyhow, we went in & saw the intern first. The intern wasn't convinced that any of dad's symptom's have anything to do with his tumor. I wasn't exactly nice, although I wasn't mean either. I was concerned. I want answers for my dad. He doesn't deserve to live like this. The intern seemed concerned. As he was looking dad over, the actual doctor came in. The doctor went and looked at dad's disks.

Hope you're sitting down. The tumor has NOT GROWN. How is it possible that Dr. Jani explicitly said that it HAD grown when in fact, right there in the report, with dad's name on it, the radiologist said, "There has been no change." Thank You Dr. Jani for messing this up. Making us worry even MORE about my dad. We were completely hell bent that this tumor needed to come out! It's grown! No, it hasn't grown.

Dr. Sibley was awesome. I wasn't exceptionally nice to him either. He saw my frustration with the mixed opinions of all the doctor's.

I said, "Dealing with all of these doctors is like mediating a divorced couple, it's hell."

He chuckled. The intern interjected that this is a puzzle, we just have to put it together.

As the doctor was talking to dad, listening to him stutter, watching him TRY to keep his thoughts together, you could SEE that he was still examining dad. He watched how he talked, how he moved, his facial expressions.

Then out of no where, he looked at me & said, "Does he tremor often?" I replied that he did, only when still though. I noticed it last week. His hands shake, when he tries to eat, he shakes. I just thought his blood sugar was low.

The Dr. said, "xxxx, I want to see you walk."

Dad gave a confused look. NONE of these doctors have asked dad to walk! He took dad out in the hall and watched him walk.

We came back in the room & he said, "Have you been checked for Parkinson's disease?" No. No he hasn't. He said, "This is what I'm going to do, we're going to call Dr. Li (groan.. I loathe that woman too & expressed as much to the doctor), I'm going to have you tested for Parkinson's & we're going to put you on medicine for Parkinson's. Worst case scenario, the medicine doesn't work. Best case, it works and we make this better for you."

For the first time in 6 months we have something else to go on besides the tumor. All because Dr. Sibley paid attention to my dad. He cared.

We told him about the depression & stress diagnosis & Dr. Sibley said, "No, this is not stress & depression, this is neurological." FINALLY! AGAIN! Here we go! I hope with everything I have that we are getting somewhere with him. They aren't using depression & stress as a fall back because they don't know!

Dad has a doctor appointment on Monday at 9:30 am. I didn't know this until yesterday after work.

Mom said, "Dad said that it's a waste of time for you guys to take off work."

I said, "Uhm, how's he going to get down there?"

She said, "He said he's going to take himself."

I laughed. I said, "Bullshit mom, I'm taking him."

I went out into the kitchen & asked dad when his appointment was.

He said, "Before 12."

I said, "How are you getting there?"

He said, "I'm going to drive myself."

I looked at him & said, "Do you think that's wise?"

He said, "You girls don't need to go with me, we aren't going to find anything out."

I said, "Daddy, it's like this, I don't care what we find out or not, what happens if you get into an accident and hurt someone else? You can barely walk around the house & we're supposed to be ok with you getting behind the wheel & driving somewhere?"

I said, "If it were Pontiac I wouldn't be so pissy about this, but it's Bloomington, they're doing construction, I don't want you to get confused."

He said, "My appointment is at 9:30."

I said, "GOOD we have a date then for 8:30 on Monday!"

He said, "What about your work?"

I said, "Dad, I'll get it figured out."

I am hoping and praying that I don't lose my job. I would NEVER EVER express that to my dad though. I take doctor's notes in to prove where I've been (hell I have to do that for my attorney too since I'm still getting alimony!)

It's like I told mom, "I don't know if I'd want to work for someone/place who doesn't believe that family comes first." Luckily I think they'll be ok with this. I hope so.

So the newest diagnosis is Parkinson's possibly. Monday we should be making more appointments for more testing and possibly get a rx for dad for Parkinson's.

I'm putting another post up since this one is solely about dad & I don't want to get the next post mixed in with this one!

I Have Prayed, I Have Begged, & Now I'm just Desperate

I went to my folks' house this morning to take mom's teeth to the dentist. She lost a tooth. Down the drain. Luckily she isn't attached to her teeth so I didn't have to take her with. Not that I mind her company but she had a bad night last night. She forgot to change her oxygen tubes & so she slept without her oxygen on. Made for a bad night. She said that she woke up gasping for air a lot. Thank you God for not taking my mom last night. 

Moving on. I have prayed, I have begged, I have pleaded & now I'm flat out desperate. This morning when I went to get my mom's teeth, as I was leaving. My dad stopped me & said, "Here's my Bible, Lisa." I told him a while ago that I wanted his Bible. It has his name on it. There are little papers of places that he's marked in it whether be it recently or not, it's his. At some point those scriptures meant something to him. He said, "If anything happens to me, it's yours. It's sitting right here." I said, "Well tell mom so that she knows." He said, "I have, I've also told her my other wishes as well." He started sobbing. He doesn't want anyone fighting over anything. I refuse to fight for anything. What ever happens happens & no matter what is received or not, it won't bring my folks back after they're gone. Everything in the house could be donated to charity & it wouldn't bother me one bit. It's their wish. He sobbed some more. I said, "Daddy, if you don't have the strength to fight anymore, it's ok, you have a lot of people who will fight for you." He said, "I know." 

Today he looked so tired, so worn out. He's losing hope. None of these doctors are doing anything for him. They tell him he's crazy, he needs counseling, he needs to be institutionalized. BULLSHIT! He said, "I need to go lay down." I said, "Ok dad, lemme help you." He stumbled. His legs weren't working right. I helped him to bed. He laid down and cried even more. I said, "Daddy, did you take any extra medicine today?" I hated asked but I needed to know. He's really bad today. He said that he hadn't. I've never seen him try to be so prepared to die. He said that he's had some really bad dreams. They're about him leaving Kaitlyn. His precious Kaitlyn. I question if he would've made it this far without her. He is her reason for living. 

I got him laid down, tucked him in, kissed him, knelt next to his bed & said a silent prayer, "God, please don't make my daddy suffer anymore. Either fix him or let him go peacefully." My dad is just a shell of the man he was. It's because of the tumor. I fully believe that. 

Today is his big appointment. If this neuro says no, I fear my reaction. I really do. If he says no, we go to Iowa. If we go to Iowa I'll be setting up a benefit for him. I will need help. I'm not good at asking for help. I'll need it though. I don't know how to do it. I've never been to a benefit either so I don't even know how they work. 

If by the grace of God he gets his surgery, I'll need help then too. I'll be taking a leave of absence from work all the while hoping that I'll have a job to go back to in the fall. I'll need ideas of easy meals to make. Quick meals to make etc. Depending on how his surgery goes, I may or may not need sitters for the babies. Their dad isn't seeing them as he should and I really don't want them stuck to my side as I try to take care of the folks. I have already made them sacrifice their sports. They generally play T-ball in the Spring & Christopher was set to play Mighty Mights this fall. I explained that I had to take care of the folks & this is what family does. Sometimes we have to make sacrifices for family. Christopher's reply? "After they die, can I play then?" He meant no malice but is 9 and was honestly wondering. I told him, "Yes bug, you can play after they die." His next question? "How will they see me play?" I said, "Honey they'll watch ALL of your games from Heaven, not just 1 or 2 games a season." He was happy with that. "I'll play for them he said." Bless you my amazing son! 

I'm also looking into taking some sort of crash course classes for me to better help my parents. There are going to come times when I'm going to have to know how to get them in & out of bed. I sort of know how, but not 100%. I need to know how to do bed baths etc. All of the stuff that we take for granted they will need help with. So far I'm not finding anything so if anyone has any ideas it'd be appreciated. 

I think this is all for now. Dad's appointment is at 3:30 P.M. Today. Please send massive prayers that this doctor SEES what really needs to happen & doesn't say that he's mental. If he does I fear the future for my dad. 

~Lisa

Thursday is the Day.

Thursday we see another neurosurgeon for dad. We are stressed beyond belief. Praying until our knees are bloody. We have a lot of fear. Fear that this neuro won't take dad's tumor out. If he says no I asked mom what she would do. She said, "We take him to Iowa." It sounds so simple doesn't it? It's not. Insurance does NOT cover Iowa. It will be out of pocket. I fear for my folks' financial stability if we are told no on Thursday. If they are told no, then I have no choice but to set up a benefit for dad. There's nothing else to do.

Iowa hospital is 7 hours away 1 way. I hope and pray that dad can make the trip. I have never been so frustrated and sad at the same time. My dad is sick. We have lots of doctors and yet nobody will help him. Today, I'm praying that this neuro sees the urgency in my dad's health needs. I pray that he sees that dad DOES need this surgery to take this tumor out. Before it gets bigger. Before it takes my dad's vision away. Before it kills my dad. That's the bottom line. If the tumor doesn't come out, my dad will die. He won't see his next birthday. It won't matter if dad takes his own life or if the tumor kills him. If he takes his own life I couldn't blame him. He spends his days being dizzy, having headaches, and crying. Yet nobody wants to help him. (Doctor wise) Any doctors who agree with us don't have the ability to perform brain surgery on him. The ones who do, don't agree with us. It's a vicious circle of hell.

My dad is sick, he's got a cold or sinus infection. He's coughing a lot now. He can hardly breathe. I wonder if he'll even make it to Thursday with as bad as he feels and as sick as he looks. I dreampt the other night that I was standing over dad's casket. I woke up with tears streaming. It sucked. I'm not ready to let him go, if they fix him, he won't be ready to die. Today, I think he would be ok with dying because he is in so much pain. His quality of life is nothing. He sleeps. He sleeps to get away from the pain, the dizziness, all of it. I can't blame him at all. My dad is just a shell of the man he used to be. Yet he still tries to help whoever he can. That's just my dad.

Moving on to my mom who won't talk about herself at all. Not right now. Not with dad being the way he is. She will be having her cat scan soon to find out if this chemo is working. I hope and pray that it is. We need for it to. I question if it is though, she is having a rough time breathing & was talking the other day about upping her oxygen because she just didn't feel like she was getting enough. She's on 4 liters. She is thinking of upping it to 5.

This week was her off week for chemo. It's kind of nice to know that even though it's Tuesday, she won't be sleeping all day. I was standing behind her last night & running my fingers through her hair. Generally her hair is coarse & greasy feeling. It wasn't.. I stood there for a good 10 minutes just running my fingers through it. It was so soft. I told her as much. She said, "That new stuff that you bought for Kaitlyn, I used it." I said, "Well, it's working because I could stand here all night running my fingers through your hair!" LOL!

Between me & you, I was just thankful that she still has hair. Knowing that eventually I'll never be able to run my fingers through her hair again. Sometimes I just go in and stand in the kitchen for a little bit and close my eyes, listening to the sounds of their house. Knowing that one day, their house will be silent. I'm taking mental pictures of everything. The sounds, the sights, all of it. Then I just realize that I want them to live forever. They can't go anywhere. I need them. My babies need them. My babies' babies will need them.

I hope everyone had a great Easter.