Frustration Level has hit it's Peak.

If we could find a doctor who HASN'T LOST their compassion somewhere between medical school & actually practicing medicine we might be ok. Until then, more suffering. More suffering for my dad. More suffering for us, as a family, watching him sleep his life away. I have hardly ANYTHING nice to say about 2 doctors. I'm lividly upset. I'm German, me being upset is NOT a good thing!

A week & a 1/2 ago or so we got some amazingly good news! Dad's Tumor had grown. For most this would be devastating. For us, it was GREAT news! Maybe they'll listen!! Say it with me.. TAKE THE TUMOR OUT! That's what we NEED to happen! He was set up with a new doctor. Dr. Sibley.. or something like that. Yesterday he still had an appointment with Dr. Li (neurologist) & Dr. Murphy (heart Dr.). Julie went with him guns blazing because when my folks were at the psychiatrists office he said, "THIS IS NOT STRESS!" (Finally! someone else who agrees!) She showed her Dr. Paturi's report. There, in the report, it said, "Dad needs to be admitted to a behavioral facility." WHAT?!?!? ARE YOU KIDDING ME? That's NOT WHAT HE SAID TO US!!! He said, "It's not stress!" NOW he's recommending that dad be admitted?!?! NO! NO! NO! To top all of this off, Dr. Li said, "His tumor has NOT grown, it could be a shadow, see you in July."

I'm livid. *insert a TON of expletives.*, *insert more expletives*. Ok that should be good. BIIIIG DEEP BREATH!!! How can a doctor explicitly tell the family ONE THING & then write the complete opposite on their report? It makes no sense. My dad, feels defeated. Like the air was taken from his sails. Here, for the past week we had hope again. Hope that they could FIX this. That they could FIX him. Make him better!! Do anything to take his suffering away. That is exactly what he is doing, he's suffering. Now we're told no. Dr. Jani was wrong, everyone is wrong but Dr. Li.. BS! I can't stand her! I really can't.

Dad then had an appointment with Dr. Murphy (heart Dr.). Dr Murphy said, "DO NOT LET THEM TAKE NO FOR AN ANSWER GET THAT TUMOR OUT!!!" Ok wait, what? Really? It's like having a bunch of divorced couples in a room. They don't agree on ANYTHING! The ones that agree with us, can't take his tumor out. The ones that don't agree with us (thus far) could.

This is past frustrating. My dad is suffering. None of the doctors care. They don't care enough to find out what the problem is. We've been begging for 6 months, please, just take this tumor out. They refuse. We have insurance.. *waives the insurance card in the air*. Please. Anything. make my dad ok. They refuse. It's like being spit on every time dad leaves the doctor discouraged. My dad is a great man. He is so loving, you should see him on any Hallmark Holiday.. he gets my mom 2-3-4-5 cards because he can't choose just one. He's an awesome daddy. You should see him with my kids. He loves them so much. Yet none of this matters to the doctors. It's not THEIR dad, It's not THEIR papa, It's not THEIR husband, therefor they sleep fine at night while I question if my dad will make it through the night.

Until we find out more on the 29th.. Lisa.

Unknown Illness Possibly Diagnosed.

Dad had an appointment Monday in Chicago. That doctor wanted to send him to a balance doctor & one other doctor. I can't remember which. Anyhow, yesterday I was laying down & mom called. They had gotten a call from Dr. Jani's office. The results of his MRI were in. Dad's brain tumor has grown. It's now pushing on his sinus cavity. All other doctors are on hold now as we get him into a neurosurgeon.

Please excuse me as I have a complete melt down.

I really wish these doctors would listen to us. We've been begging for 6 months to please just take the tumor out. See if that makes him better. Just try it. Instead they all jumped on the "mentally unstable" train. It was bullshit then & it's bullshit now. He was released from his counselor after 4 weeks. Finally 2 weeks ago all of the doctors agreed that he needed to see someone in Chicago because they couldn't figure it out. How is it possible that you go to college for 15 years and can't figure out what is wrong with my dad, yet his family members have it all figured out?!?!?!?

I think when doctors go to medical school they loose some compassion. They lose something.

So now we wait again, for another neurosurgeon to figure out if/when they are going to do surgery on dad.

Mom is doing ok.. she's hanging in there. Doesn't seem to be doing any better though. I am honestly questioning if this chemo is working at all. She is getting short of breath pretty quickly. No side effects to speak of. After the red devil and no side effects I almost equate side effects with chemo working or not.

This is the latest update. Am sure there's more however the kids are being super loud this morning! ~Lisa

Updates On The Folks!

Wishing I had uber wonderful news however I don't know if I really do or not.

Here's the deal.. mom is taking her new chemo & she's now going to Bloomington to do it. This is wonderful news! I hated Pontiac & obviously my mom did too! I feel safer with her in Bloomington. If something were to go awry during a treatment ALL of her specialists are in Bloomington. Bloomington is just a better deal! She's doing ok on her chemo. Tired, but hanging in there. Since Mike is working A LOT she's being more independent since I'm not 100% available anymore. In a way this is good & in a way I'm carrying a lot of guilt over it as well. I think of all the stuff that she does in a day & then think to myself you could've, should've done this this & this. I don't want to take what little independence away that she has though. So for now, Mom's blood counts look good, her chemo is doing well, she still has her hair & is just as beautiful as ever!

Now moving on to dad. He was cleared by his counselor after 5 weeks. This shoots the theory of it being mental all to hell and back because guess what?!?! He's NOT ANY BETTER! He's actually getting worse. One of his doctor's put him on a pulse ox monitor for 24 hours. I went to give my dad a hug & noticed the numbers on it... 94, 95, 96 occassionally. That means that his saturation level is pretty low considering the man has NEVER smoked a day in his life! It should be 100%! It's not. I said, "Daddy why are you having such a low number?" He said, "That actually is really good because it was 92-93%." I stop and think... this isn't right. I'm wondering if he doesn't have something going on with his lungs. IMO I think that they need to do a torso Cat Scan or MRI. Check his lungs, his heart (again), and all of his innards. Around midnight with his cpap (he has sleep apnea) he wakes up, gasping for air. He has to take his cpap off. He says that he feels worse with it on than off! They've even adjusted it and still nadda.

Lack of 02 can cause ALL of his symptoms! Think about it! Hold your breath for a little bit.. oh say 3 minutes.. if you're not passed out on the floor, try walking and talking, keep your balance and don't stutter! This makes sense to me. He gets winded easily. I told mom to force a nose cannula or mask on him w/ her oxygen. Just see if it makes him feel better!

We're awaiting his next appointment which is this week! I think it's just with the regular doctor. They are trying to get him into Iowa. Get him in, I'll take him. I don't care. Make my folks ok.

This is the update from here! Things are sort of looking up I think.

Things Aren't Going Well...

Mom had her first chemo on Monday. Dad wasn't well enough to go (he was super tired) so I took her. Luckily I had taken the day off. She tried going to Pontiac and it was quite the disaster. Pontiac's office is dark & dreary. It's part of the old hospital. It's yellow cinder block. There's ONE window in the chemo room with 15 chairs crammed inside. It was a nightmare.

We walk in & it took easily 45 minutes for them to hook her up. She was the 4th one there. There was a woman with her husband who was being infused. Another woman who looked annoyed that she was even there. In the next chair there was a woman who was thrilled that she was 'healthy' enough to be infused. Then there was my mom. Instantly looking annoyed at the situation and didn't really like everyone being so close to one another. There was an empty chair next to mom. In the corner was an older guy. Looked to be in his 80s. It's hard to tell age when someone is on chemo because it can age you quite a bit. The rest of the chairs were empty. The room was the size of a hospital room. Literally. In the 'center' of the room was 2 chairs for people who were waiting & watching their loved one get infused. If those filled up then hopefully there was a chemo chair open for someone to sit in.

The chairs didn't lay back as they should've. In the beginning there was 1 nurse to 5 patients. Then around 10 another nurse came in. Quite large and she had a hard time 'fitting' between the chairs and in the room in general. It was loud. I don't know if the people were necessarily talking loud or if it was just such close quarters that it seemed loud. Mom was finally hooked up and she laid back, trying to sleep a little bit. It didn't happen.

Mom was done around 1 and we busted out. You could tell she was just annoyed about everything. It was ok. I was too. I texted her before we even got her hooked up & said "Bloomington next week." Her eyes bulged and she nodded. LOL! I loved it!

The guy in the corner freaked me out. He kept wanting me to sit by him and I kept denying it. I have a thing against old guys. I don't necessarily like them. (Childhood skeletons) He dropped something and stupid me went to help him pick it up. He grabbed my hand & my heart hit my throat. I was NOT comfortable at all. He looked at me & said, "Why don't you crawl up under my blanket with me?" I looked at my mom, searching for help of some sort. He had a TIGHT grip on my hand.. I was thinking let go of me b/c I would HATE to hit you in the face while you're being infused. I wriggled my hand out of his & promptly moved. I don't know what in the hell he was thinking. I was grossed out to no end. I told my dad about it & he looked at me & said, "You should've punched him!" LOL! I Love my dad! I'm kind of glad he wasn't there because he just might've gone psychotic on him. LOL!

This brings me to my dad. He's not well. He's getting worse. He hasn't driven in over a week, I'm sure of it. He asked me last night if I could take him to Wal-Mart. I asked him when he wanted to go. He said this morning. I'm kind of killing time until we go. Mom asked me last night for D's number because she's ready to take him to Iowa. He's had counseling for over a month and still nothing is getting better. Everything is getting worse. He's not stable at all on his feet. He looks gray all the time. He just LOOKS like he feels like shit.

Monday is mom's next chemo & dad's counseling. I haven't taken the day off of work & Mike is leaving for 5 weeks for work training. That means that it'll be me & the kids & the folks. I'm unsure of how I'll manage but I will. I'm really thinking that I need to take Monday off. I can still do it. It's not too late. Mom said that she'll drive down to Bloomington, but what if they get into a car accident? It should be a no brainer. This is my first YEAR on this job so I KNOW that they are watching me closely. It sucks to have to choose job vs my parents. I'm going to talk to mom this morning. If she doesn't think that she and dad can handle it then I'll call on Monday morning and let them know that I can't be there. *sigh* I'm on the rocks about this.

Please keep the folks in your prayers. They really need them right now.

"Your Friend" Should've been signed "Your Angel"

Dear 'Your Friend',
        Thank You. Thank You is insufficient. Yesterday when I got off of work I went to my mom's. More tears fell. Massive amounts of tears fell. My mom handed me a card. I opened it. Out fell something that was needed for my folks. Something that made my mom think. She has now said that she will TRY to go to Pontiac but if she can't handle it or if I'm not comfortable with it she'll go to Bloomington. Thank You 'your friend'. You have no idea how much the card alone helped. I sit here typing with tears because it proves how much my folks are loved not only by me but by so many other people. I think I know who 'your friend' is but I could be wrong. This generic "Thank You" will have to do until I find out more. Love, Lisa & her folks ;)

       I have taken Monday off of work. Tuesday was a super crappy day at work. It was my attitude more than anything else. I cried most of the day Tuesday and most of the afternoon yesterday. The chemo has never NOT worked. I never thought my folks would go to the oncologist and hear, "The chemo isn't working." I always assumed the chemo would become too aggressive and the side effects would be what would stop my mom from taking chemo. NOT that it wouldn't work.

      I went in to work yesterday and my boss wasn't there. I asked the ladies if anyone was taking Monday off. They all said no. I explained the situation and explained that while I could show up to work I'm unsure of how much help I would actually be. They all encouraged me to take the day off. When my boss got back and I could talk to her WITHOUT crying I did. She said, "Lisa you only have 1 mom, you have sick days for family illness, use them." Less than 5 minutes later she had a sub for me on Monday.

      As it turns out I had to drop an order off to my boss' boss and asked her if my boss had contacted her about me being off on Monday. She said that she hadn't. I explained the situation to her and again she encouraged me to take the time off. Telling me that, "Whatever I needed to do was ok." I love my job. I might only be a lunch lady, but I love it. The hours are perfect. I'm out of my town for 4 hours total per day. That leaves 20 hours to take care of my folks. I need this right now. My co-workers are amazing. They don't get upset with me when I'm having a super bad day and just need to emotionally shut down. They are supportive with my folks' health issues. That alone is worth all of their weight in gold.

       Monday I will be with my mom as they infuse her with new chemicals. New chemicals that are supposed to have less side effects than the Red Devil. New Chemicals where she SHOULDN'T lose her hair. I don't know why that's so important to me but it is. Maybe it's because if she has her hair, then I can 'pretend' that she's not sick. Maybe it's because my babies won't see that she is sick. Denial is sometimes nice.

       My mom is doing as she's always done. She's put on a smile and a strong exterior. I know seeing me cry doesn't help. For me reality is setting in. One day I won't walk in to the sound of her oxygen machine running. One day I'll pick up the phone to call her and she won't be there. One day I'll send her a text and I won't get a response. One day I'll yell, "I LOBR YOOOOOO" over my shoulder as I'm leaving and there won't be a response. One day I'll desperately need one of her hugs and she won't be there to give me one. My pillow will have to do. Anytime you go into my folks' house when they get home from somewhere the house is filled with the smell of my mom's perfume (Sweet Honesty or Night Magic from Avon) it's an awesome smell. She's worn it for as long as I can remember. One day it won't be there. I asked my mom yesterday. "What will happen when it's not there." She said, "Lisa, you'll sit in the middle of the floor and cry. You'll want to scream and you'll be mad because I left you." Through massive tears I told her that I wouldn't be mad at her for leaving. I couldn't be mad at her for leaving. She said, "It's ok if you are." She said, "You'll sit in the floor and cry as hard as you ever have before." I'm blessed and cursed at the same time. I've never lost anyone I was super close to. I don't know the pain and the finalization of death. I know what it means. I've never truly felt it though. It's a curse that quite possibly my parents will be my first real experience with death.

~Lisa

Updates All Around.

My dad got his psychoanalysis back a couple of weeks ago. It showed that he was depressed. That's it. The doctors are now blaming all of his symptoms on depression. The stuttering, the dizziness, the stumbling, the forgetfulness. It's all depression. Feel free to draw your own conclusion because chances are we agree with you. *if bullshit was your first conclusion then you are spot on*

Moving on. My mom had a cat scan last Friday on her lungs. They are every 2 months now vs every 3 months. Her oncologist wanted to see if her chemo was working. It's not. Her cancer has grown again. A little bit. That's all she can get out of her oncologist. A little bit. No 'size'. Although the last time that her cancer grew and it was a 'little bit' it went from the size of a finger nail to a plum. Again draw your own conclusions.

Mom was supposed to have a red devil treatment on Friday. They have stopped the red devil and she is now going on a new chemo. She couldn't remember what it was called. She now goes once a week vs once a month. She isn't supposed to lose her hair. This new chemo is supposed to have less side effects. I'm unsure how you can have less side effects when Red devil didn't give her any side effects.

She's switching her treatments to Pontiac vs Bloomington b/c of  the price of gas. She likes the Bloomington office better though. Personally if I have to sell everything I own to pay for her to go to Bloomington I would. It's ONLY once a week. I need to talk to her more about it today. It's all about her comfort. I have been to the Pontiac office and I hate it. It's so dark and dreary. Absolutely NOTHING like the Bloomington office.

As I've said before chemo is for the family not the patient. I don't know who in their right mind would put themselves through all of this stuff. I honestly don't. My mom's love for her family is never ending & it's deep.

It's sunk into me.. but I'm still in denial over it. Reality is one day all I'll have left of her are her memories, the smell of her perfume, and when I have a bad day I won't be able to call and talk about it. When I need a hug, my pillow will have to do because she won't be here to hug me. This shit sucks. I hate cancer. I hate that my mom has to go through this. I wish it were me.

2nd Round of Chemo Done! Psychoanalysis Results IN!

I really should try to update this blog more huh? Things have been crazy busy for me lately!

Mom had her 2nd Chemo treatment on 2/4/2011. She seems to be doing ok with it. She's tired which is to be expected. This last Chemo didn't take nearly as long as the first one did. They pumped her with her histamine blockers before they started the Red Devil. She was done by 3:30pm. She still has her hair and isn't really being affected by too many side effects. Her next chemo appointment is 3/4/2011.

Dad got his psychoanalysis back. It showed that he is depressed. Rx for that? He was told, no kidding, "Go out and play in the snow with your grandbabies and get some counseling." uhm. hmm. :/ Yeah. Not sure what to make of that honestly. If the counseling works and he gets better GREAT! If not, then what? According to all of the doctors he's healthy as a horse. They are going to put him on a c-pap machine to help his breathing at night. We'll see how this goes. Right now I'm not a believer. Hopefully I'm wrong. Hopefully this IS all it takes. Monday he has a counseling appointment. Please work.

That's the update from here. Really nothing too spectacular has happened. I am kind of liking this lull in drama right now!