I knew today would be rough. I didn't expect it to be this rough. I called mom this morning to see how she was doing. She said, "I feel gaggy & I am NOT doing ANY MORE CHEMO!" She was steadfast on this. I said, "Mom, we've told you before & will continue to reiterate this, it's YOUR body, YOUR rules." I've never been so serious about anything in my life. Dad was going to lay back down so I figured that I'd be taking her down. I think dad was just too stressed to actually do it.
I got there to pick her up & asked dad if he wanted to take her (he was still in bed). He said, "Maybe you should just take her." I said, "Ok daddy, no problem." I left him a note on his counter that said something to the fact of, "Daddy I'll take care of her today & make sure that all of her stuff gets picked up." Mom & I left & we chatted some. She admitted about the time we hit the 4 way stop here in town (66 & 24) that when she looked in the mirror she thought to herself that she looked like she had cancer. She said, "What do you think?" I said nothing. Finally I said, "What do you think about this hot weather?" She said, "I hate it! Gary can keep his hot weather in Florida!" LOL! She said, "I noticed you changed the subject." I said, "Yes, I did." I looked out the window breathing deeply so I wouldn't cry. We chatted a little bit more about stuff in general.
As we got there mom said, "I'm just gonna sit on the bench inside the doors, I'm too weak to walk back." I said, "That's fine mom, I've gotcha." I parked & made it into where she was & got her wheel chair out. I sat her at the end of a row of chairs. & checked her in. I said, "She's supposed to get chemo today but she's done with chemo, she's not doing it anymore." They called her back for her blood work. After an hour of being there mom was getting more tired by the minute. While we were waiting for that hour to pass, my mom looked at me with extremely tired eyes & said, "Please don't leave me here." I said, "I won't mom, I promise you."
I finally went up & said, "She wants to go home. She's done, she's worn out, this is taking too much out of her." The receptionist told me that more or less she couldn't leave. She NEEDED to see the doctor. Within 5 minutes they had all of mom's stats & we were in a room. Her blood pressure looked good but she has lost 14 lbs in the past week. The doctor came in within a few minutes & said, "You're having side effects from the chemo." Mom said, "If this is what this is like, I'm done, I don't want to do this anymore." The doctor told her that he wanted to give her 2 bags of fluid & some Zofran to help with the nausea. He said, "No chemo this week but we can try to cut it in 1/2 next week." Mom said, "I don't want anymore if it's going to make me sick." He said, "I'm going on a 4 day conference with 40K oncologists to find out the latest information on new treatments." He said, "We'll get you the fluids now, No chemo." He left. Just like that.
The nurse came in literally seconds later & Mom said, "Lisa has questions for the doctor but he didn't give her time to ask them." She said, "I'll go get him." I swear this doctor should be called Houdini, he's in & out of a room in SECONDS! Mom is honestly thinking of getting a new oncologist. He has a classic way of tap dancing around the questions. He came back in & said, "You have questions?" I said, "Yes, how much has mom's cancer grown?" He kind of gave me an "Oh Shit" look. I wasn't about to leave that room until I had NUMBERS! I wanted SIZES! He flipped through her chart for a good 3 minutes. I waited, in silence. I was not moving on until we knew. He said, "A month (I think he meant 2 months) ago it was 1.9 cm, now it's 3.9-4.0 cm. It went from the size of a nickel to the size of a 1/2 dollar. I nodded. Then I asked the million dollar question. If she stops having treatments how long does she have left? He looked down as though he really didn't want to answer. I was expecting 6-9 months. He said, "3-5 months." If I wouldn't have been caught off guard I would've asked him how long with chemo. I guess since I asked him such 'challenging' questions I'll just wait til next week.
The nurse came back in & took mom out to get her fluids. I asked how long it was going to be & she said 4-5 hours. She said that she had to drip it in slow b/c otherwise it would surround her lungs. I got mom settled & questioned her a few times if she was ok since I promised her that I wouldn't leave her there. She said that she was fine. I left & headed back to mom & dad's house to drop their van off & pick my car up. I had called dad to let him know what was going on. I told him everything. By the time I got to their house he was sobbing. I hugged and hugged him. It was wretchedly terrible leaving for work with him crying. I asked a couple times if it was ok if I went to work. As much as I did NOT want to call in, it had crossed my mind with everything going on. He said that it was fine.
I went to work & tried to think of everything but what was going on. I made it through the work day & flew outta there so that I could get back to mom & dad's & check on dad. By the time I got back he was ok. I gave him lunch & asked if he needed anything while I was headed back to Bloomington. He had me pick something up for him at True Value & then I was off to see mom.
I called mom & asked how soon she was to be done & she said that she still had a while yet. I said, "Well while you are doing that I'm going to stop by the other doctor's office & pick up your rx & then get your running around done at Wal-Mart." I stopped by the doctor office & in true fashion they didn't have her rx ready. I went to Wal-Mart & picked up a few things that mom needed & then 3 pairs of her pajamas that she loves.
Side Story, Mike was over there with me before I gave her her shower & she was wearing a ratty Cardinal's shirt & one of the cute pairs of pj pants that I had gotten her for Mother's day. When we got home he told me that it bothered him to see her in a ratty shirt & said that if she was going to wear pajamas they needed to be cute pajamas. He tried getting her some in Pontiac when he went on Sunday but they didn't have them. He said, "On Tuesday when you guys are in Bloomington, stop by Wal-Mart and get her 3 pairs." I was flabberghasted. He said, "Well you know how crappy you feel when you're in ratty clothes, so I figure mom aught look cute in her pjs!" LOL He's just awesome!
Ok back on track ;), As I was almost back to The Cancer Center, mom called. She said, "Where are you?" I said, "I'm on my way back are you ready?" She was. I got her in the car & settled & showed her, her new jammies. She was so happy. I absolutely loved seeing her smile. It's been a while since she has & this was just awesome. I told her about Mike's little ordeal about how she needed cute pj's. She said, "Awww!" LOL!
We talked some more on the way home. She asked me what I thought. I said, "We're getting to the point of having to decide quality of life vs quantity." I didn't go much deeper because I really didn't want to cry. Not yet. We had general conversation on the way home along with a few choice words to the drivers who like to tailgate.
I dropped her off at home & helped her in. Dad got to her and sobbed. I don't think I've ever seen him cry so much. He said, "I've prayed and prayed that God would give me her cancer so she wouldn't have to go." I said, "Dad I've prayed that I could take all of you guys' illnesses away from you so I could have them." That one didn't get answered either.
After everyone got settled, I left to get Kaitlyn from school. We stopped back by to see them on my way home. I made them all sandwiches & chatted for a minute. Then I came home.
It's been a very long & emotionally draining day. At this point we won't know if mom will continue her chemo until next week. If she doesn't she will need all of our support & prayers. I am praying that she does what is right for HER. I'm leaving my selfish wishes out of this. I have to. I want to keep her. *nuff said*
Until tomorrow~Lisa
P.S. I'm asking for everyone who knows her to send her a card. Words of encouragement, Prayers, Hopes, etc. If you have a favorite memory please write it inside.
Tuesday, May 31, 2011
Monday, May 30, 2011
Memorial Day 2011
Ok so this is the 3rd time I've started this specific blog update. Nothing is coming out right. I don't know why but it's just not. Here's the short of it all.
Mom spent 1/2 of the day out of bed today. It was nice to see. She went back to bed around 1pm. Mike grilled out & we took dinner down around 7 pm. Mom was in bed & had been since 1. She was worn out from this morning. Tonight I made dad's plate, the babies plates, & my plate. Then I headed back to mom's room w/ Mike & Kaitlyn in tow. We all sat around mom & had dinner with her. As of right now she can only handle soft foods since her mouth is sore from the chemo treatments. This is a known side effect.
I loathe eating in bed, but we did it. Mike brought her computer chair out & ate at the end of her bed. Kaitlyn & I sat on dad's bed and ate. We chatted just like this was completely normal for us. Normalcy, that's what is so desperately needed. None of this is normal right now.
While we were chatting with mom, Mike crawled up & laid in bed with mom. It was quite possibly the sweetest thing ever. Mom looked completely comforted by him. Without a doubt, we are so lucky to have him in our lives. He has been nothing but supportive of all of us during this time. Sometimes I forget that he's going through this just as we are. He is not only my rock, but my folks' rock too. He has an unbelievable amount of compassion. More than anyone I've ever known I think. I digress.. (Lord only knows I could go on for hours about Mike)
Right before we were getting ready to leave mom asked for a bowl of ice cream. I took her her ice cream. I asked if it made her mouth feel better. It does. I don't know why I asked, I just did. Dad was in the shower so I just hollered through the door that I loved him & I would see him tomorrow morning. I peeked my head around mom's bedroom door & said, "Sorry, I'm not hugging him.. that's awkward!" LOL! She laughed.
Tomorrow morning will be emotionally draining. We're meeting with the oncologist. My dad, my mom, & I. We have questions and we want answers. Granted mom is done, but we want to know how long she has left, what we need to expect, etc. We don't want some "Oh I have millions of chemos left to try." We are looking for brutal honesty. We need that right now. How are we to make an informed decision if he tippy toes & gives us a bunch of empty answers or worse yet empty hope & promises?
This was how mom's day went today. Tomorrow there will be another blog on the doctor's appointment with all the information that we are requesting, hopefully.
To Our Service Men & Women--Thank You from the bottom of our hearts. We appreciate all you do & have done to keep us safe.
~Lisa
Sunday, May 29, 2011
Fear
That's the word as of late in this house. Mom talked Friday about being done with chemo. She can't stand being as sick as she is. She hasn't been out of bed since Wednesday except to use the bathroom. Yesterday morning she sat dad & Kaitlyn down & explained to them that she is done with chemo. She can't do this anymore. Her body is tired. Her mind is tired. She is done.
I cried most of the day yesterday. I've done ok today. I went down around 12:30 this afternoon and saw her. Dad was laying in bed next to her sleeping. I didn't keep anything all that quiet. We talked a bit, I asked if she wanted to get her shower. She did. Then it started storming. I went in their bathroom & cleaned it for them b/c it was in desperate need of a good cleaning. Tomorrow I'll do their shower. As I got her pajamas, towel & washcloth out for her I heard her & Mike talking. He told her that I had broken down the night before. It was true, I had. It's actually pretty freaking awesome that Mike is so comfortable with my folks.
The storms finally quit and I asked her if she was ready to get into the shower. I got her oxygen set up in the bathroom for her, her shower stool in the shower, and prepared for her to get in the shower. As I did this, it dawned on me, I'd only really sat on the toilet and kept her company when she was in the shower, only helping as she needed.
I helped her in the shower & as she put soap on her washcloth I told her when she was done to let me know so I could wash her back. I did. As I washed I just kept thinking, "Get it clean, get everything clean, you don't want her having bed sores." Her arms felt too heavy to wash her legs so she let me wash them for her. I washed her hair & put it in a mowhawk for her. I had to do something to keep from bawling.
My mom, the strong woman had become almost like an adult child in a way. We got her shower done & I sprayed her all off. Helped her out of the shower and she dried most of herself but I dried the rest. My mind went from "Get it clean, get everything clean." to "Get everything dry, don't miss a spot, you don't want a bed sore forming there or any type of infection." I was sort of a wreck. I helped her get dressed & put her cream on her belly so that she wouldn't get an infection there.
I got her laid back in bed & she said, "Shit deodorant!" I went and got her deodorant for her, she went to take it from me & I said, "I've got it mom." As she laid in bed she said, "Maybe tomorrow I can get clean sheets?" I said, "Mom, while we were in the shower, Mike changed your sheets for you." You could see the relief on her face.
She was so worn out from just taking a shower & getting dressed. As I watched her lay there I ran through everything in my head. Was I forgetting anything? Was I making sure that she was changing positions enough to make sure that she didn't get any bed sores? Was she comfortable? Did she need anything? I finally figured out that everything was good & I could relax for a minute I asked her if I had done ok. I said, "Mom my biggest fear with you guys being sick is having you guys loose your dignity." She said, "Lisa, you did fine." *whew* That is my biggest fear in the world. They're already sick, I don't want to make them feel any more uncomfortable than they already are.
Once I was satisfied that she was ok, I told her I'd be back in a bit. She said that she was going to nap.
Right now is the first I've actually stopped and thought about everything. She doesn't want anymore tests. She's done. I'm scared, no scratch that, I'm freaking petrified of her future. My prayers now consist of, "Please don't let my mom suffer." I don't want her to suffer. I want her to be ok. If it's her time to go then please let her go peacefully with all of her dignity in tact. She deserves that. Of course if I could save her & keep her with me forever I would.
I'm unsure if it's a blessing or a curse to be 32 years old and have never lost anyone that you were close to. Many people know that my brother died @ 22 from Good Pasture Syndrome. I didn't know him though. It was hard to see my parents so upset & to know that it was a sad happening, but to have any actual connection to him? I didn't. Now it appears as though my first lost will be one of the biggest losses of my life. My mom & best friend.
That was her day today. Tomorrow is Memorial Day, Mike, the babies & I, will be hanging out at the folks' house. We're cooking out & making the absolute most of tomorrow. We're making memories, memories that count.
~Lisa
P.S. I realize that there is a lot of personal-ish information in here. It's meant to be that way. NOT for any reason than for others to realize what is going on & how she is really doing. I hope that makes sense.
Friday, May 27, 2011
The Talk.
The time for THE talk has come. Mom isn't doing well at all. She's sick to her stomach and the anti nausea meds are not working. She's been up and down for the past 48 hours with diarrhea, nausea, heart burn, her throat is sore, etc. She is supposed to have chemo on Tuesday. She is also seeing the doctor then. She is going to discuss what options are left. Either a new chemo or she's done.
I asked her probably the deepest question I could today. "Mom, how do you know when you're done?" She said, "You just know. When you're too sick to really care what happens. When you make peace with the fact that you aren't going to get any better. It's time." (Not verbatim but close) I said, "Kinda like when you meet THE one, you just know?" She said, "Yeah, like that. You know how much I hate being sick. I'm just like my mom. She hated being sick too." I held it together. I held my thoughts together. I held my emotions back. I really wanted to scream, "You can't be done mom, let me do the chemo for you, let me be sick for you." If only it really worked that way.
My mom is slowing making peace with death. I think she's tired. She's tired from seeing doctor's all the time. She's sick of being so tired all the time. Her body is tired. These last 5 chemos have taken a toll on her. The first 2, emotionally, when they just didn't work. The past 3 because they are making her sick. She's starting to have anxiety over the upcoming chemo treatments. I don't want her to have to go through that. It's not fair.
*insert complete meltdown*
I want to do this for her. I want to fight for her. I want to take her pain away. I want to be the one that's sick for her. She's such an amazing mom & woman, that she really doesn't deserve this. She sees it as, if she dies then someone else won't have to.
This is all happening too fast. I'm losing her too fast. She's more than just a wife, mom, grandmother, mother-in-law, aunt, niece, friend, amazingly-awesome-person. She's our family matriarch. She's a caretaker, she's a lover, not a fighter, she has more compassion for the human race than most. She is opinionated and strong. She loves with her whole being. She gives so much more than she ever takes. This is just not fair. I know that life isn't fair, but can't this ONE thing be fair?
I'm selfish, I admit it. I want to keep her forever. Her work here isn't done. It can't be done. She has too many people who love her & are willing to fight for her. What will dad do? His world is my mom. My heart is breaking this afternoon. I don't know how to make peace with losing my mom. I can't. I won't. Not today. Probably not ever.
Listening to my 12 year old daughter tell me that she wants to be there when grammy dies so she can "hold her til she gets to heaven" was about all I could take. She doesn't want Grandma to die alone. Today when I saw my Kaitlyn at work, she said, "Did you check on Grammy & Papa before you came to work?" I said, "Yes baby I did, they were napping." She looked relieved and smiled as she walked away.
I want to be there when she talks to the doctor. I want to know if she takes chemo, the estimated time she has left. If she quits, how fast is this cancer, how long will she have left? I want to know everything. Her oncologist is genius for hiding behind smoke and mirrors. He's overly optimistic about things. We want the cold hard facts. The honest truth.
Today is a sad day for me. I support my mom whole heartedly. It's her decision and her body, it doesn't make it any easier though. My heart is still breaking. If I could do this for her I would. Without question.
I asked her probably the deepest question I could today. "Mom, how do you know when you're done?" She said, "You just know. When you're too sick to really care what happens. When you make peace with the fact that you aren't going to get any better. It's time." (Not verbatim but close) I said, "Kinda like when you meet THE one, you just know?" She said, "Yeah, like that. You know how much I hate being sick. I'm just like my mom. She hated being sick too." I held it together. I held my thoughts together. I held my emotions back. I really wanted to scream, "You can't be done mom, let me do the chemo for you, let me be sick for you." If only it really worked that way.
My mom is slowing making peace with death. I think she's tired. She's tired from seeing doctor's all the time. She's sick of being so tired all the time. Her body is tired. These last 5 chemos have taken a toll on her. The first 2, emotionally, when they just didn't work. The past 3 because they are making her sick. She's starting to have anxiety over the upcoming chemo treatments. I don't want her to have to go through that. It's not fair.
*insert complete meltdown*
I want to do this for her. I want to fight for her. I want to take her pain away. I want to be the one that's sick for her. She's such an amazing mom & woman, that she really doesn't deserve this. She sees it as, if she dies then someone else won't have to.
This is all happening too fast. I'm losing her too fast. She's more than just a wife, mom, grandmother, mother-in-law, aunt, niece, friend, amazingly-awesome-person. She's our family matriarch. She's a caretaker, she's a lover, not a fighter, she has more compassion for the human race than most. She is opinionated and strong. She loves with her whole being. She gives so much more than she ever takes. This is just not fair. I know that life isn't fair, but can't this ONE thing be fair?
I'm selfish, I admit it. I want to keep her forever. Her work here isn't done. It can't be done. She has too many people who love her & are willing to fight for her. What will dad do? His world is my mom. My heart is breaking this afternoon. I don't know how to make peace with losing my mom. I can't. I won't. Not today. Probably not ever.
Listening to my 12 year old daughter tell me that she wants to be there when grammy dies so she can "hold her til she gets to heaven" was about all I could take. She doesn't want Grandma to die alone. Today when I saw my Kaitlyn at work, she said, "Did you check on Grammy & Papa before you came to work?" I said, "Yes baby I did, they were napping." She looked relieved and smiled as she walked away.
I want to be there when she talks to the doctor. I want to know if she takes chemo, the estimated time she has left. If she quits, how fast is this cancer, how long will she have left? I want to know everything. Her oncologist is genius for hiding behind smoke and mirrors. He's overly optimistic about things. We want the cold hard facts. The honest truth.
Today is a sad day for me. I support my mom whole heartedly. It's her decision and her body, it doesn't make it any easier though. My heart is still breaking. If I could do this for her I would. Without question.
The Cancer Center is like a Day Care.
Monday morning mom had her 2nd chemo. Her 3 cocktail chemo. Monday she only had 2 though. She only gets the 3rd every other week. This next Tuesday she'll have all 3 again.
I pulled up to the doors and quickly realized that I'd have to walk her in & help her get settled. Now that her chemo appointments are lasting for more than a couple of hours she has more to bring in. More air tanks, more stuff in her bag, and her laptop. I parked after dropping her off. I unloaded the van of everything she'd need and walked in. She was already seated with her folder that has all of her information in it. As I looked around I realized how many younger people where there with older people. Parents & grandparents with their adult children.
I walked her laptop back to the nurses station and told them who it was for. I turned around to walk out, more people had showed up. There were hardly any chairs available for the new people coming in. Soon the chairs in the waiting area would be empty and the chairs in the chemo area would be filled. I walked over to my mom kissed her on the head & said, "Be a good girl & don't cause any problems." It's my typical response. It's a joke between us. The "cause any problems" goes back to mom getting her Red Devil and her heart rate & blood pressure dropping as the nurses surrounded her.
As I walked out, it was super lonely. I was leaving my mom there to be infused. I instantly thought of what it must've been like to leave me at daycare when she worked. I could just see her bringing all of my stuffs in for the day. Dropping me off in the appropriate area, putting my things in my cubby, kissing me before she left telling me to be a good girl. Then the lonely walk out the door as she headed to work.
How similar & yet foreign this all was. I've dropped my babies off at daycare, it was difficult and yet so similar to what I am doing now with my mom.
Mom did ok with her chemo. She was pretty tired though. She's had a rough week since Monday. The chemo is kicking her butt. She's slept a lot. Yesterday was a really bad day though. She was in bed all day long. She was/is super nauseated. Her anti-nausea meds aren't really helping much. I laid in bed with her yesterday afternoon after I got off work and we talked. I can't even really remember what all we talked about. We just talked. It was odd, yet comforting to lay with her in bed wishing and praying to myself for her to get better. I was there for only about 20 minutes or so til she was ready to go back to sleep. I told her I'd come back down later. She said, "If you take a nap, please set your alarm for 4:45 pm, I need you to come back down and spend more time with me." I said that I would. I came home and just kind of sat here in a daze. This is all happening too quickly. I don't like this. I want it to stop. I want everything to stop. I NEED it to stop. I need my mom to be ok. She's my best friend.
I laid down to keep my mind from swirling. At 4:45 pm my alarm went off. I got up, stumbled out of the bedroom (yeah I slept hard), Mike was home, I said, "Hi, I'm going to moms." He sat out in the garage and talked to me for a minute & then I left. I walked into mom & dad's house, talked to dad for a minute and headed back to see mom. I looked at her oxygen hoses to see which one was connected. Her bedroom hose has a green tip and her office one has a clear tip. The green was hooked up. I walked in her bedroom and kissed her on the forehead. Her eyes only opened 1/2 way. I said, "Hi mama!" She said, "What time is it?" I said, "It's almost 5." She said, "I've slept the afternoon away." I said, "It's ok mom." I laid across my dads side of the bed. (Mom has one of those adjustable beds, dad has a flat bed). I laid my head on her mattress and we just talked. She said, "If I keep feeling like this, I can't do this." I said, "I know mom, it'll be ok." Kaitlyn joined us and laid where I had laid earlier. I instantly thought, mom has 2 generations right there with her. Mom, with her arms around Kaitlyn & I. I took a picture. I don't even care that mom looks ill, soon I won't be able to take pictures.
I appreciate the willingness of my mom to have her picture taken whenever. I'm pretty sure I'll need those when the end comes.
Today, I'm hoping & praying that mom feels human today. That her nausea goes away. That she feels better and that this chemo stops making her SO sick. A little sick is ok, SUPER sick is not.
~Lisa
I pulled up to the doors and quickly realized that I'd have to walk her in & help her get settled. Now that her chemo appointments are lasting for more than a couple of hours she has more to bring in. More air tanks, more stuff in her bag, and her laptop. I parked after dropping her off. I unloaded the van of everything she'd need and walked in. She was already seated with her folder that has all of her information in it. As I looked around I realized how many younger people where there with older people. Parents & grandparents with their adult children.
I walked her laptop back to the nurses station and told them who it was for. I turned around to walk out, more people had showed up. There were hardly any chairs available for the new people coming in. Soon the chairs in the waiting area would be empty and the chairs in the chemo area would be filled. I walked over to my mom kissed her on the head & said, "Be a good girl & don't cause any problems." It's my typical response. It's a joke between us. The "cause any problems" goes back to mom getting her Red Devil and her heart rate & blood pressure dropping as the nurses surrounded her.
As I walked out, it was super lonely. I was leaving my mom there to be infused. I instantly thought of what it must've been like to leave me at daycare when she worked. I could just see her bringing all of my stuffs in for the day. Dropping me off in the appropriate area, putting my things in my cubby, kissing me before she left telling me to be a good girl. Then the lonely walk out the door as she headed to work.
How similar & yet foreign this all was. I've dropped my babies off at daycare, it was difficult and yet so similar to what I am doing now with my mom.
Mom did ok with her chemo. She was pretty tired though. She's had a rough week since Monday. The chemo is kicking her butt. She's slept a lot. Yesterday was a really bad day though. She was in bed all day long. She was/is super nauseated. Her anti-nausea meds aren't really helping much. I laid in bed with her yesterday afternoon after I got off work and we talked. I can't even really remember what all we talked about. We just talked. It was odd, yet comforting to lay with her in bed wishing and praying to myself for her to get better. I was there for only about 20 minutes or so til she was ready to go back to sleep. I told her I'd come back down later. She said, "If you take a nap, please set your alarm for 4:45 pm, I need you to come back down and spend more time with me." I said that I would. I came home and just kind of sat here in a daze. This is all happening too quickly. I don't like this. I want it to stop. I want everything to stop. I NEED it to stop. I need my mom to be ok. She's my best friend.
I laid down to keep my mind from swirling. At 4:45 pm my alarm went off. I got up, stumbled out of the bedroom (yeah I slept hard), Mike was home, I said, "Hi, I'm going to moms." He sat out in the garage and talked to me for a minute & then I left. I walked into mom & dad's house, talked to dad for a minute and headed back to see mom. I looked at her oxygen hoses to see which one was connected. Her bedroom hose has a green tip and her office one has a clear tip. The green was hooked up. I walked in her bedroom and kissed her on the forehead. Her eyes only opened 1/2 way. I said, "Hi mama!" She said, "What time is it?" I said, "It's almost 5." She said, "I've slept the afternoon away." I said, "It's ok mom." I laid across my dads side of the bed. (Mom has one of those adjustable beds, dad has a flat bed). I laid my head on her mattress and we just talked. She said, "If I keep feeling like this, I can't do this." I said, "I know mom, it'll be ok." Kaitlyn joined us and laid where I had laid earlier. I instantly thought, mom has 2 generations right there with her. Mom, with her arms around Kaitlyn & I. I took a picture. I don't even care that mom looks ill, soon I won't be able to take pictures.
I appreciate the willingness of my mom to have her picture taken whenever. I'm pretty sure I'll need those when the end comes.
Today, I'm hoping & praying that mom feels human today. That her nausea goes away. That she feels better and that this chemo stops making her SO sick. A little sick is ok, SUPER sick is not.
~Lisa
Thursday, May 19, 2011
I Just Want To Cry.
I can't really explain why, I just do. This morning am filled with anxiety. Yesterday was really hard for me. I procrastinated as much as I could. I drug my feet getting ready. Waited til the absolute last minute to get ready. I think I do that so when it's time to go am in a frenzy and then I don't have to think about what's coming. I didn't cry on the way down.
She said, "Lisa, I have a need, well a want." I said, "Mom, I can turn ANY want into a need..just try me!" (My mom has always been huge on, is this a want or a need? LOL!) I said, "What does dad say?" She said, "He doesn't even know, you're the first to know." I said, "Mom, am I your best friend?!?!" I said it jokingly, with a big grin, because it just cracked me up the way she was dragging on telling me what she wanted. She said, "Yes, you're my best friend, so is dad, but you are too." I said, "Woohoo Mom, you're my best friend too!" LOL! Looking back it's pretty comical how we went totally off topic, but at the same time, I think it was necessary. (Of course I'm bawling just thinking about it but I digress)
I said, "Ok mom, what's your need, want, need?" She said, "I'd like to have a little laptop for my chemo treatments. Yanno, one I can farm on." I laughed. I wondered when that would happen. My mom might be in her 60s but she's so tech savvy sometimes. If only I could help her remember how to clear her cookies & temp internet files! I said, "Well, mom, I can turn that into a need." LOL! (For anyone thinking about getting her a mini laptop, do NOT!) ;)
We talked. We laughed. As I was getting ready to drop mom off & help her into the cancer center, I said, "Mom, I really needed this today." She said, "I know honey." I needed that time with her, that time where we didn't focus on what was coming up.
After I dropped mom off I went and got something to eat. I was starving. It was really weird. I was in a fog after I dropped her off. Nothing really made sense. I was hungry but NOTHING sounded good. I ended up at the old stand by of Mc Donald's. As I paid for my early lunch, the lady said, "Have a good day." My mind instantly thought, "Up yours!" Really? Wow. Guess this whole thing was bothering me more than I thought. I ate right quick and went back to be with mom.
She was still in the waiting room. About 10 minutes after I got back, she was called back. They set her up, yesterday she was in purple. (They have different colors for the different nurses) She sat down and started talking about the new chemo, what to expect, what the side effects were. With these 3, diarrhea, nausea, & vomiting is possible. The nurse said, "You will probably lose your hair." We both said, "Probably not." She only lost her hair on the very rounds of chemo. She said, "Well then maybe not, but it's a possibility." She looked at the nurse & told her, "If am feeling sick all the time, I'll be done." The nurse said, "That's completely understandable."
We've told my mom through all of this, this is YOUR body and YOUR decision. It completely is. We won't be mad if ever she decides ENOUGH chemo. We will support her 110%. I wouldn't want to have to go through chemo, be sick, and then stop & have my family mad at me. That's just ridiculous. Although am sure somewhere, some chemo patient is going through it!
Mom did well with the chemo. No bad reactions yesterday. She kept asking me, "Are you bored?" I said that I wasn't. I really wasn't bored. I love being with my mom. We talk about so much. She is completely my best friend. My mom said yesterday, "Lisa, you might end up having to be the strong one after I die. Mike might need you more to lean on than you him." I kind of giggled. Yeah, we're all THAT close to my folks. Then again my folks are just that amazing that it's hard not to be.
I got her DQ for lunch. In true mom fashion she ate her Blizzard first. LOL! Then she complained about how awful their burgers had become. LOL! It was classic. Then she napped. While she napped, I ran her errands for her. I got back and she was talking to someone named Debbie. Apparently I was supposed to remember her. I didn't. I had not a clue who she was. I just remember mom saying, "This is our youngest." Debbie's eyes popped! Apparently I look a little different from 25 years ago. :/ lol!
We got out of chemo at 6:15ish. We drove home. I was on edge and cranky. Mom said, "You always get cranky when I have all day chemo." I do get cranky. It's hard watching her go through this. There's a whole mental preparation I have to go through before I can take her down and not sob the whole time I'm there. I told her that I was extremely stressed out. I was. I was tired b/c I didn't sleep well the night before, and I was just stressed. There's no easy way to put it. I apologized if I was snapping at her. I really don't mean to.
Watching her become pale as she's infused, watching her power port get jabbed as they insert the needle almost made me pass out, listening to the side effects of her cocktail, watching people come and go, watching the bags being changed, the beeps of the IV pumps etc. It just really puts me on edge.
I dropped her off, told her I 'lobr'ed' her and came home. Mike was waiting with a gigantic hug. I needed that. I need him.
The only thing I regret is not going in and hugging dad. I just didn't think of it at the time.
That's it from yesterday. Today we wait and see how things go. Hopefully mom sleeps. Hopefully she doesn't have too many side effects and the side effects she does have, are manageable.
She said, "Lisa, I have a need, well a want." I said, "Mom, I can turn ANY want into a need..just try me!" (My mom has always been huge on, is this a want or a need? LOL!) I said, "What does dad say?" She said, "He doesn't even know, you're the first to know." I said, "Mom, am I your best friend?!?!" I said it jokingly, with a big grin, because it just cracked me up the way she was dragging on telling me what she wanted. She said, "Yes, you're my best friend, so is dad, but you are too." I said, "Woohoo Mom, you're my best friend too!" LOL! Looking back it's pretty comical how we went totally off topic, but at the same time, I think it was necessary. (Of course I'm bawling just thinking about it but I digress)
I said, "Ok mom, what's your need, want, need?" She said, "I'd like to have a little laptop for my chemo treatments. Yanno, one I can farm on." I laughed. I wondered when that would happen. My mom might be in her 60s but she's so tech savvy sometimes. If only I could help her remember how to clear her cookies & temp internet files! I said, "Well, mom, I can turn that into a need." LOL! (For anyone thinking about getting her a mini laptop, do NOT!) ;)
We talked. We laughed. As I was getting ready to drop mom off & help her into the cancer center, I said, "Mom, I really needed this today." She said, "I know honey." I needed that time with her, that time where we didn't focus on what was coming up.
After I dropped mom off I went and got something to eat. I was starving. It was really weird. I was in a fog after I dropped her off. Nothing really made sense. I was hungry but NOTHING sounded good. I ended up at the old stand by of Mc Donald's. As I paid for my early lunch, the lady said, "Have a good day." My mind instantly thought, "Up yours!" Really? Wow. Guess this whole thing was bothering me more than I thought. I ate right quick and went back to be with mom.
She was still in the waiting room. About 10 minutes after I got back, she was called back. They set her up, yesterday she was in purple. (They have different colors for the different nurses) She sat down and started talking about the new chemo, what to expect, what the side effects were. With these 3, diarrhea, nausea, & vomiting is possible. The nurse said, "You will probably lose your hair." We both said, "Probably not." She only lost her hair on the very rounds of chemo. She said, "Well then maybe not, but it's a possibility." She looked at the nurse & told her, "If am feeling sick all the time, I'll be done." The nurse said, "That's completely understandable."
We've told my mom through all of this, this is YOUR body and YOUR decision. It completely is. We won't be mad if ever she decides ENOUGH chemo. We will support her 110%. I wouldn't want to have to go through chemo, be sick, and then stop & have my family mad at me. That's just ridiculous. Although am sure somewhere, some chemo patient is going through it!
Mom did well with the chemo. No bad reactions yesterday. She kept asking me, "Are you bored?" I said that I wasn't. I really wasn't bored. I love being with my mom. We talk about so much. She is completely my best friend. My mom said yesterday, "Lisa, you might end up having to be the strong one after I die. Mike might need you more to lean on than you him." I kind of giggled. Yeah, we're all THAT close to my folks. Then again my folks are just that amazing that it's hard not to be.
I got her DQ for lunch. In true mom fashion she ate her Blizzard first. LOL! Then she complained about how awful their burgers had become. LOL! It was classic. Then she napped. While she napped, I ran her errands for her. I got back and she was talking to someone named Debbie. Apparently I was supposed to remember her. I didn't. I had not a clue who she was. I just remember mom saying, "This is our youngest." Debbie's eyes popped! Apparently I look a little different from 25 years ago. :/ lol!
We got out of chemo at 6:15ish. We drove home. I was on edge and cranky. Mom said, "You always get cranky when I have all day chemo." I do get cranky. It's hard watching her go through this. There's a whole mental preparation I have to go through before I can take her down and not sob the whole time I'm there. I told her that I was extremely stressed out. I was. I was tired b/c I didn't sleep well the night before, and I was just stressed. There's no easy way to put it. I apologized if I was snapping at her. I really don't mean to.
Watching her become pale as she's infused, watching her power port get jabbed as they insert the needle almost made me pass out, listening to the side effects of her cocktail, watching people come and go, watching the bags being changed, the beeps of the IV pumps etc. It just really puts me on edge.
I dropped her off, told her I 'lobr'ed' her and came home. Mike was waiting with a gigantic hug. I needed that. I need him.
The only thing I regret is not going in and hugging dad. I just didn't think of it at the time.
That's it from yesterday. Today we wait and see how things go. Hopefully mom sleeps. Hopefully she doesn't have too many side effects and the side effects she does have, are manageable.
Tuesday, May 17, 2011
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.
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.
Wednesday, May 4, 2011
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
Tuesday, May 3, 2011
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
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
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