This will come off as snotty & snide.. If you get offended then you do. I'm not going to apologize. My frustration level has hit it's peak. Maybe this will be good maybe it will end up being a train wreck, but here goes.
I am DONE being criticized for doing the absolute best that I can in taking care of my parents. I have recently been informed that my parents' information shouldn't be out for everyone to read, that I write the blogs for attention, & that I'm flat out doing a shitty job taking care of them.
Here's the deal, My folks KNOW about this blog. They SUPPORT this blog. This is a fast way to update EVERYONE instead of making a million phone calls to let everyone know how they're doing & listen to them stutter as they try to find some sort if genius answer. There is NO genius answer. There is NO 'right' answer. This is merely what is going on in my mom & dad's life. I am NOT doing this without their permission, I wouldn't DREAM of it.
Some people are very private. My folks believe that if their information helps someone else, than it was worth it. Even if it's ONLY ONE person. I imagine people have stumbled upon my blog while searching answers on information for chemo. This is NOT a medical website, this is the true life happenings of what my mom has gone & is going through.
This is also information on what my dad has gone through as well. His mystery illness that we still do NOT have a diagnosis for. Someone in California could be reading this & say, "Hey my dad had that, he passed away but he had THIS!" I get an email telling me their story & have my dad's doctor's check it out & we could FINALLY have that desperate answer that we've been searching for. Is it a long shot? YES! But we're quickly running out of options with my dad. So to those who think it's too much to put out there. This is why. Yes they know about it.
Now onto the whole attention thing... Seriously? I can think of a million other things that I'd want attention or kudos for than taking care of my parents. I wouldn't wish this on anyone. It is unbelievable HELL watching your parents be ill in front of you. Watching them go from active healthy adults to shells of who they used to be. If I REALLY wanted the attention, I'd be making individual phone calls to discuss and beat the proverbial dead horse.
And on to the last accusation of me not taking good care of my parents. I am NOT a Nurse, I am NOT even REMOTELY in the medical field. My folks do NOT want a home healthcare nurse. That leaves me. I see very few people willing to come and visit and even fewer coming to actually help take care of them with me. A lot of people won't even call & DEPEND on this blog so they are not put in the situation of trying to find SOMETHING 'right' to say. Exactly what DO you say to someone who openly admits that she's dying? What DO you say to someone who says, "No I'm not feeling well today." I'm sorry. That's a pretty short conversation. Many won't talk about what is going on in their lives because they suddenly feel as though it's insignificant compared to what my folks are going through. Yanno, Hearing your 'insignificant' stuff makes my folks FEEL NORMAL!!! There are NO miracle words to say right now. There never will be.
I guess in short I'm saying, if you don't like something I'm doing, come to me with it. Do not run your mouths about me to other people. Better yet, offer to help or say, "Hey, here's an idea." There is NO book on how to properly take care of your parents. I have asked & asked again if anyone knows of any caretaker classes so that *I* can GET BETTER at taking care of them. Right now I'm doing the absolute best that I can. Don't like it? Offer to help. Chances are, you won't be turned down.
If you don't like the blogs then don't read them. It's that simple.
Here's the only absolute thing that I can promise you. If you are going to say something nasty about me taking care of my parents, their blog, or anything of the like, you will NOT like my response. At this point, I do NOT have time to sit around and think about what everyone else will think when I post something. If anything offends you, this happens to be YOUR problem.
All of this being said, If you've offered to help, it's appreciated. If you've called & talked about insignificant stuff, it's appreciated. If you've prayed for my folks, it's appreciated. If you've come to see them, it's really appreciated.
~Lisa
This is the link to their new blog. This way, if you don't like it, you can't just click on it & see, you have to be approved. NEW BLOG
Monday, June 6, 2011
Saturday, June 4, 2011
She's Going To Try Again.
Dr. Sriratna called yesterday & told mom that he wants to do a 3 day chemo. Monday, Tuesday, & Wednesday mom will receive chemo. Then she'll have a month off (I believe that's how he said it, if I'm wrong I'll correct it later today). I honestly think that 3-5 month prognosis scared her. I'm all for her doing & continuing chemo unless, it makes her sick like it did last time.
Here comes more heartwrenching possibly bad news. Mom has been saying for a few weeks that her pain meds are not helping her back & right hip. (She has degenerative disc disease) She's had numerous back surgeries to try and help with the discs that are more or less falling apart. I've noticed her struggling a little bit more as she tries to stand, lay down, sit down, etc. I said, "Mom what's going on?" She said, "My meds aren't working. Nothing is working." I said, "It's ok mom, it's probably just the chemo making you feel worse." I am pretty sure I was wrong. She is having no side effects from the chemo that she had almost 2 weeks ago, yet the pain is still there.
Side story...It was around 7 am & I was sitting out in the garage talking to Mike. It hit me.. slowly but it hit. I'm wondering if the cancer hasn't spread to her bones. I mentioned it to Mike & he said, "Maybe." I have since done a ton of research on Stage IV Lung Cancer & Bone Pain. After reading & reading some more it is fairly common for Lung Cancer to spread to the bone. This lessens the length of life. As I discussed this with mom she had already thought of that. I asked what would happen on her autopsy? What would they put for her cause of death? Stage IV Lung Cancer? Bone Cancer? Fallopian Tube Cancer? All 3? She said, "Since my cancer started out in my Fallopian Tubes that would be considered the cause of death unless something catastrophic happens."
*biiiig deeeeepp breath*
I'm glad that my mom is so open to talking about everything because if I wasn't allowed to talk to her about it I would most likely be a basket case by now. I can talk to many people about it, but she's going through it. I'm taking notes in my head about everything. How this happened, how that happened. She is using some of the information that she has from my aunt & gramma's deaths. I guess maybe I'm doing the same thing? I'm unsure.
I still say that all of this is happening too fast. I would like for mom to get a test done to see if it has in fact gone to her bones but she says, "No, I already know I'm dying, and I already know the cause, you will get all the information from the autopsy." I'm perfectly fine with this because she's right, why in the world would/should she go through another test when we already know the outcome? I digress...
Moving on to dad.. He's doing ok. Not great, but ok. He has a Dr appointment Monday w/ the neuro. We are interested in seeing what she has to say since there is some improvement with his functions. She was completely against letting him try this Parkinson's medicine. We're hoping that she ups it just a little bit. Then, with any hope he'll do ok.
I think this is all for now, hopefully everything goes well on Monday. Will blog after their appointments unless something else comes up!
Here comes more heartwrenching possibly bad news. Mom has been saying for a few weeks that her pain meds are not helping her back & right hip. (She has degenerative disc disease) She's had numerous back surgeries to try and help with the discs that are more or less falling apart. I've noticed her struggling a little bit more as she tries to stand, lay down, sit down, etc. I said, "Mom what's going on?" She said, "My meds aren't working. Nothing is working." I said, "It's ok mom, it's probably just the chemo making you feel worse." I am pretty sure I was wrong. She is having no side effects from the chemo that she had almost 2 weeks ago, yet the pain is still there.
Side story...It was around 7 am & I was sitting out in the garage talking to Mike. It hit me.. slowly but it hit. I'm wondering if the cancer hasn't spread to her bones. I mentioned it to Mike & he said, "Maybe." I have since done a ton of research on Stage IV Lung Cancer & Bone Pain. After reading & reading some more it is fairly common for Lung Cancer to spread to the bone. This lessens the length of life. As I discussed this with mom she had already thought of that. I asked what would happen on her autopsy? What would they put for her cause of death? Stage IV Lung Cancer? Bone Cancer? Fallopian Tube Cancer? All 3? She said, "Since my cancer started out in my Fallopian Tubes that would be considered the cause of death unless something catastrophic happens."
*biiiig deeeeepp breath*
I'm glad that my mom is so open to talking about everything because if I wasn't allowed to talk to her about it I would most likely be a basket case by now. I can talk to many people about it, but she's going through it. I'm taking notes in my head about everything. How this happened, how that happened. She is using some of the information that she has from my aunt & gramma's deaths. I guess maybe I'm doing the same thing? I'm unsure.
I still say that all of this is happening too fast. I would like for mom to get a test done to see if it has in fact gone to her bones but she says, "No, I already know I'm dying, and I already know the cause, you will get all the information from the autopsy." I'm perfectly fine with this because she's right, why in the world would/should she go through another test when we already know the outcome? I digress...
Moving on to dad.. He's doing ok. Not great, but ok. He has a Dr appointment Monday w/ the neuro. We are interested in seeing what she has to say since there is some improvement with his functions. She was completely against letting him try this Parkinson's medicine. We're hoping that she ups it just a little bit. Then, with any hope he'll do ok.
I think this is all for now, hopefully everything goes well on Monday. Will blog after their appointments unless something else comes up!
Thursday, June 2, 2011
Mom & Dad's Dr. Appointment w/ the GP
This really should just be titled dad's appointment. Mom didn't go because she wasn't feeling well. She couldn't even remember why she was going. She thought it was for a check up & she said, "I've had enough check ups!" Dad & I got in the van and left. I had to pick up an rx for her & they didn't do it right. She's calling this morning to complain.
They already had dad in a room when I got back to where he was. I said, "Dad, will he be a few minutes I have got to pee!" He said, "Yes, he should be." He was wrong.. I was gone literally 2 minutes and Dr. Jani was in the room with him already! LOL!
He started asking questions about the form that he needed to fill out. As we talked dad said that it felt like they needed to up his Parkinson's meds. He said, "They seem to work for about 6 hours and then they don't." Dr. Jani raised an eye brow. He looked at me kind of questioning if I agreed that the meds were working. I said, "Yes, but they are wearing out too early. He is doing GREAT on them!" I said, "He doesn't stumble, stutter, and his memory seems to be a bit better." I said, "HE LAUGHS!! It's been so long since he's laughed!" Dr. Jani said that he wasn't convinced that dad had Parkinson's & wasn't ready to give him that official diagnosis. He said, "If you do have Parkinson's than you are showing in an Atypical way." He said, "On the other hand, if someone gave me medicine for Parkinson's it wouldn't work for me, so the fact that you are having improvement is proof that there is something neurological going on." *nods* We know this.
Then came the rough topic. My mom. I said, "Mom is obviously not here. She wasn't feeling well but also couldn't remember why she made the appointment, if it was for a check up or what." Then dad started in.. "She went to the Cancer Center yesterday and they gave her 2 bags of fluid (he held his hands up to show Dr. Jani how big the bags were) while exclaiming how big the bags were." Dad said, "She spent the past week in bed, she's lost 14 lbs, they've given her 3-5 months to live." I interjected and said, "Daddy, that's only if she stops chemo." Dad said, "If it makes her sick she's done".. his face contorted. I jumped up to stand by him. Within seconds he was sobbing. Dr. Jani said, "I'm sorry sir, I'm really sorry sir." Through the tears dad said, "She's sick and I can't take care of her. I can't take this from her." I looked up at the ceiling & rubbed dad's back. Dr. Jani was rubbing the other side of dad. He said, "Sir, she's been fighting this for so long, she's done so well!!" Dad cried harder. I looked over at Dr. Jani & his eyes were filled with tears. He took his glasses off & said, "Sir you're making me cry!" Dad apologized for breaking down and crying. Dr. Jani said, "It's all right, all of this is hard." I looked at Dr. Jani & said, "A year from November will be 40 years that they've been married." He shook his head, it wasn't a no, it wasn't a yes, it was more of an "I understand" shake. (I hope that makes sense.)
Dr. Jani said, "We'll get that blood test for you." Dad thanked him & the nurse came in within a few seconds. Dad tried to stand up out of the chair & he fell right back down. The nurse and I both grabbed for him. I'll have to check his arms this morning to see if I scratched him. I was trying to lessen his fall. He stumbled a little bit and the nurse looked him in the eye & said, "Paul are you ok?" He said, "Yeah, am ok." She became more stern & said, "Are you sure?" He said, "Yeah."
We got his blood work & did the normal trip to Wal-Mart after any type of appointment & came home.
*insert numbness*
A few days ago I felt as though I couldn't stop crying. The past few days I'm so incredibly numb. I see all of this, I don't cry. I feel sympathy and sadness, but I can't cry. It sort of pisses me off because I feel cold hearted. In any other circumstance I would've been bawling right along with dad. I just couldn't. I don't know if I wouldn't let myself or what. I think this is the most difficult. All through out life I could NEVER see my mom cry & me not join in with her. Going through a 1/2 a box of tissues would've been nothing if mom & I are both crying. Now I just can't. I can't relax enough I guess. I'm numb. I feel like a robot. I have stuff to do & I don't have time to cry. I don't have time to do anything but make sure that my folks are ok. I'm fine with this. I don't mind taking care of them at all. I see their daily struggles with that I also see their daily triumphs too. I digress.
This was dad's appointment yesterday. Mom did ok yesterday. She was out of the bed most of the day. Then she was up late too. She is amazed at how much better she feels with fluids. I really need to find a caretaker class. I feel like I should've known that she was dehydrated. I should know all of this stuff. I just don't.
Until later today or tomorrow....
They already had dad in a room when I got back to where he was. I said, "Dad, will he be a few minutes I have got to pee!" He said, "Yes, he should be." He was wrong.. I was gone literally 2 minutes and Dr. Jani was in the room with him already! LOL!
He started asking questions about the form that he needed to fill out. As we talked dad said that it felt like they needed to up his Parkinson's meds. He said, "They seem to work for about 6 hours and then they don't." Dr. Jani raised an eye brow. He looked at me kind of questioning if I agreed that the meds were working. I said, "Yes, but they are wearing out too early. He is doing GREAT on them!" I said, "He doesn't stumble, stutter, and his memory seems to be a bit better." I said, "HE LAUGHS!! It's been so long since he's laughed!" Dr. Jani said that he wasn't convinced that dad had Parkinson's & wasn't ready to give him that official diagnosis. He said, "If you do have Parkinson's than you are showing in an Atypical way." He said, "On the other hand, if someone gave me medicine for Parkinson's it wouldn't work for me, so the fact that you are having improvement is proof that there is something neurological going on." *nods* We know this.
Then came the rough topic. My mom. I said, "Mom is obviously not here. She wasn't feeling well but also couldn't remember why she made the appointment, if it was for a check up or what." Then dad started in.. "She went to the Cancer Center yesterday and they gave her 2 bags of fluid (he held his hands up to show Dr. Jani how big the bags were) while exclaiming how big the bags were." Dad said, "She spent the past week in bed, she's lost 14 lbs, they've given her 3-5 months to live." I interjected and said, "Daddy, that's only if she stops chemo." Dad said, "If it makes her sick she's done".. his face contorted. I jumped up to stand by him. Within seconds he was sobbing. Dr. Jani said, "I'm sorry sir, I'm really sorry sir." Through the tears dad said, "She's sick and I can't take care of her. I can't take this from her." I looked up at the ceiling & rubbed dad's back. Dr. Jani was rubbing the other side of dad. He said, "Sir, she's been fighting this for so long, she's done so well!!" Dad cried harder. I looked over at Dr. Jani & his eyes were filled with tears. He took his glasses off & said, "Sir you're making me cry!" Dad apologized for breaking down and crying. Dr. Jani said, "It's all right, all of this is hard." I looked at Dr. Jani & said, "A year from November will be 40 years that they've been married." He shook his head, it wasn't a no, it wasn't a yes, it was more of an "I understand" shake. (I hope that makes sense.)
Dr. Jani said, "We'll get that blood test for you." Dad thanked him & the nurse came in within a few seconds. Dad tried to stand up out of the chair & he fell right back down. The nurse and I both grabbed for him. I'll have to check his arms this morning to see if I scratched him. I was trying to lessen his fall. He stumbled a little bit and the nurse looked him in the eye & said, "Paul are you ok?" He said, "Yeah, am ok." She became more stern & said, "Are you sure?" He said, "Yeah."
We got his blood work & did the normal trip to Wal-Mart after any type of appointment & came home.
*insert numbness*
A few days ago I felt as though I couldn't stop crying. The past few days I'm so incredibly numb. I see all of this, I don't cry. I feel sympathy and sadness, but I can't cry. It sort of pisses me off because I feel cold hearted. In any other circumstance I would've been bawling right along with dad. I just couldn't. I don't know if I wouldn't let myself or what. I think this is the most difficult. All through out life I could NEVER see my mom cry & me not join in with her. Going through a 1/2 a box of tissues would've been nothing if mom & I are both crying. Now I just can't. I can't relax enough I guess. I'm numb. I feel like a robot. I have stuff to do & I don't have time to cry. I don't have time to do anything but make sure that my folks are ok. I'm fine with this. I don't mind taking care of them at all. I see their daily struggles with that I also see their daily triumphs too. I digress.
This was dad's appointment yesterday. Mom did ok yesterday. She was out of the bed most of the day. Then she was up late too. She is amazed at how much better she feels with fluids. I really need to find a caretaker class. I feel like I should've known that she was dehydrated. I should know all of this stuff. I just don't.
Until later today or tomorrow....
Tuesday, May 31, 2011
Rough Day
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.
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.
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.
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