Well... It was nice having a few days to spend with my family, catch up a little at work, etc. It felt good to just take a break from feeling like I had the weight of the world on my shoulders.
After a couple of days at home, I started getting phone calls from my dad saying that my mom was starting to get very agitated in the hospital. She was starting to think that my dad and the hospice nurse were conspiring against her. She wanted to go home and thought she was being held at the hospital against her will. According to everything I was reading, this was probably pretty normal. One of the best and worst tools that the hospice nurse gave me was a book that explained the entire dying process. It explained the different stages and what to expect. It even narrowed down on what to look for in the hours prior to passing.
I was able to talk to the hospice nurse a couple of times and she suggested that we do not go against my moms wishes and start arranging to have her taken home. Personally, I didn't want this. I know it was my moms wishes, but I was being selfish in wanting her to stay in the hospital longer... Deep down I think I wanted her to stay there to maybe get better than she was. In the end, though, we finally decided to get my mom back home where she wanted to go. Because she was so frail an in bad shape, the doctors were able to get approval to have an ambulance transport her home so my dad didn't have to.
While everything was getting set up, I had the responsibility to start arranging to have some hospital equipment delivered to my parents house. I also had to meet the hospital equipment people there, which meant another road trip over to my parents house to get things set up prior to my mom getting there.
When I got to my parents house, I only had to wait about an hour or so before the van arrived with a hospital bed, oxygen machine, and a couple other pieces of equipment. I helped them set up the bed in the family room where her favorite chair had always been. This was especially important to everybody because this house is the one that my mom had grown up in. After both her parents had passed away, we remodeled it and moved in.
When my mom arrived, I helped get her situated and dug in my heels for the long haul. It was also this day that one of the other best blessings happened to me. My aunt said she was coming up to help with everything. This is my moms sister-in-law, who was married to my moms brother prior to him passing away; also as a victim to lung cancer.
We got settled in quite nicely and I was able to get my mom to actually eat some foods for the first time in over a month. I made her a vanilla milk shake and she drank about 2/3 of it! I was so proud of myself! We also gave her Coca-Cola, which she kept saying how good it tasted. I think the bubbles and coldness really raised her spirits. I can still picture and fell the warmth I had in seeing her be so happy over a simple thing! What a treat for me to finally be able to do for my mom what she had done for me over the years!
Of course, her eating was both a great thing for me to boost my spirits, but it was also one of the sings from the book the Hospice nurse had given to us that said that this was another sign of her immanent death approaching. I still kept my head held high, though, and continued on in my never ending task of what felt like taking over for my mom and holding the family together.
Reminder for next entry: Calls to hospital, dad, debi, mom demented, hospital discharge, hospice, etc...
Friday, April 18, 2008
Tuesday, April 15, 2008
It Was the Best of Times - It Was the Worst of Times
Picking up where I left off... My mom was in deteriorating condition and my sister was pregnant with her first kid.
I was at the state fair with my family - my wife, daughter, and mother-in-law. I remember it like it was yesterday. We were sitting in the food area eating an early lunch. I was thoroughly enjoying a huge cinnamon roll. It was one of the first treats I let myself have over the past six months (I was on a diet and losing a ton of weight). I remember getting the phone call from my mom. She said my dad was driving her down to the emergency room in the next town (the hospital in town would amputate an arm if there was a sliver in your pinkie).
She said she couldn't swallow anymore and was completely miserable. For my mom to get to the point that she was miserable enough to go to the hospital, it really must have been bad... I asked her if she wanted me to come over and she assured me she would be fine.
A couple hours later, I got a call from my dad. He said my mom was in for surgery. They were putting a scope down her throat and were going to try to stretch it out. We still don't 100% know what was going on, but I believe it was scar tissue from her radiation treatments that was growing and constricting her throat.
The doctor said that her throat had closed so small he was surprised she could even swallow a drop of water. I was able to talk to my mom later that day after she was done with her procedure. She was pretty out of it and couldn't talk very well, but said she felt much better and was excited to get some food in her. She was sitting in the car while my dad was in a grocery store getting some food for dinner for her.
As the days went by, my mom said she was doing much better, but she was very weak. She couldn't really talk on the phone much and assured me she was fine. I believed her.
I talked to my dad a couple days later and he said that mom couldn't get out of bed. He had to lift her out of bed several times to get up in the morning and she even resorted to just sleeping out in the chair in the family room.
I remember my dad calling me one Saturday morning while I was sitting in my family room playing video games. He said he was scared and didn't know what to do. It seemed that the anesthesia was still in her body and she wasn't gaining any of her energy back. He said that he couldn't get her lifted out of bed in time to make it to the restroom. It was the first time in my life I heard my dad break down and cry. We had talked several times over the past couple of years where he said he was scared and didn't know what to do, but this time was different. It seemed that this was real.
A few days went by and my dad was getting more and more scared. My usual routine was to call my parents on my way to work every morning. I would usually talk to my dad for a few minutes and then finish up with my mom. For the first time ever, my dad said that mom wasn't able to talk on the phone because her throat hurt and she was too weak. Everything was really starting to sink in with me now. This time really was different.
Now, I'm sure I'm leaving something out here because the next few weeks were a complete blur. My sister had been diagnosed with gestational diabetes a couple months prior and her baby was bigger than it should be. Because of this, she was scheduled for induced labor early to ensure her baby wasn't too big. It was September 4th.
My dad asked me if I could come up to his house before I met my sister in the hospital because he needed help getting my mom into the car. I knew I needed to do it, but was still in a little bit of denial, I think. As I started my drive, I remember brining a notebook with me. I decided that I needed to step up and be my moms advocate with her doctor now and start being very aggressive in her care. Between my sister having her baby and starting to help with my moms medical care, I knew I had a very tough time ahead of me.
As I left town, I remember getting stuck in traffic. I heard my dads disappointment in his voice when I said I wouldn't be able to make it in time to help him out. He said he understood and that he would just have to allow himself some extra time for loading my mom up into the car. At this point, he was able to borrow a wheelchair from one of his friends, so he had that on his side at least.
When I got to the hospital, I went up to see my sister. She was admitted the night before and wasn't having much progress. They gave her some medication, but her labor hadn't started yet. Because of everything going on with her, I couldn't tell her the shape mom was in. I didn't want to take away from her glory.
I got a call from my dad that they were pulling up to the hospital and that he needed me to meet him up front to pick my mom up with a hospital wheelchair. When he pulled up, I could tell that my mom wasn't quite as bad as I thought she would be... what a relief. She wasn't great, but wasn't good either.
My parents were fortunate enough to have a friend that had a time-share and let them stay in it that night, so at least they didn't have to drive for a couple of hours each way. That was the last thing she needed right now. After visiting in the hospital for a couple hours, we decided that we should go check into the time share for my parents. By this time, my wife and daughter had shown up to meet me, so we went and got a hotel room as well. We knew we were in for a long night.
At about 10:00pm, I got a call from my brother-in-law. He said that my sister was going to start pushing soon and that we should come down to the hospital. I was there in no time and my parents were there a few minutes later.
We waited out in the waiting room for about an hour before my brother-in-law came out and broke down crying, "It's a girl!" We were all in tears and ecstatic! I completely relived the moment I came out five years earlier saying the same thing to my parents! What a kick in the pants!
We had to hang out about 30 minutes or so until we could go back and see the new baby. I took my mom back in her wheelchair to meet her new granddaughter and my new niece. She was beautiful! It was probably the strongest I had seen my mom over the past several months. While she didn't get out of the wheelchair, she was able to hold her new granddaughter for a couple of minutes. For those few minutes, I think all of our worries were gone.
This is another moment that everything blurred together. I remember I had only been home for a couple of days from the hospital when my my mom back into the doctor or if I went home and got her back into the doctor a couple of days later... Either way - we got my mom in to get another CT Scan. Because her throat was getting tighter again and her appetite wasn't getting any better, I was really fighting for her at this point.
A couple days later, I got a call at work from the wife of parents lifelong friends. I grew up with these people and thought of them as my second set of parents. When I got the call, she told me that I needed to step up to the plate now and that my family really needed me. She prepared me to know that my mom was in very bad shape and that it wouldn't be easy to see her in the condition that she was in.
I remember I was able to take a couple of days off of work and drive over to help out my dad. I really went hard to work and did a lot. I made many doctors calls, ran errands, did grocery shopping, fed my mom milkshakes, talked to her, and did just about everything I thought I could do to help the situation. I remember my mom was on an appetite enhancing medication, but her appetite was still not there. I was able to talk the doctor into prescribing her the medication, "Merniol." This is the pharmaceutical equivalent to THC (Marijuana). We were all desperate and were pulling out all of the stops.
I think it was September 7th that my dad said my mom was in very bad shape and that he really needed help. I jumped in the car from work and started my drive over. I called my moms doctor and said that we were meeting at the office with my mom and that I was insisting that she get admitted to a hospital. She needed IV fluids and some desperate medical attention. I then asked the doctors assistant if she had gotten the results back yet from the CT scan from a couple of days prior. I'll never forget the answer. She was extremely nice and comforting, but at the same time, it was the 2nd worst phone call of my life (the first worst was the next one I would make). She told me that the cancer had spread and that her prognosis was terminal. There was nothing else they could do for her, treatment wise. She said that what we needed to do now as to make her comfortable as possible.
I remember talking to her and feeling so much pain, but relief at the same time. I hate to say it, but I was actually relieved that my mom wouldn't have to go through all of the torture she had gone through over the past three years. There is NO way I could picture myself being ever as strong as she was.
The next call was the worst call I have ever had to make. I called my dad and broke the news to him. It was surreal. I remember telling him that the cancer had spread and that we needed to focus on keeping her out of pain. He cried and I cried. I could tell that he was in another room and didn't want to let my mom know, who was probably sleeping. I told him that he needed to get her loaded into the car and meet me at her oncologists office. At the end of the call, I remember telling my dad that I loved him - it was the first time I ever remember saying it in my adult life.
A couple hours later, we met at the oncologist and my mom really looked bad. She couldn't even support the weight of her own head. She also had her hat off because she didn't like the way her wig felt on her. It was the first time ever that I had seen her bald. I've seen her with very short hair, but never bald. She had always sworn to me that she wouldn't let me see her bald. For her to be at this point, I knew it was really bad.
When we were seen by the oncologist, she said that she didn't realize how bad she was. There was some red tape in getting her admitted to the hospital, but in the long run, she was admitted very quickly.
Once we were in the hospital, I could see my mom's spirits rising. I helped with her admission. My dad and sister were there to help, but it was me with the knowledge and ability to quickly answer questions to get her into a room.
After what seemed like hours of health questions, etc., she was finally settled in to her room. Next on tap were blood work and IV fluids. Because of all the chemotherapy she had been through over the past several years, it proved to be a bit of a chore to get a vein that would work. After a little work by the hospital's best phlebotomist, she was giving blood and getting fluids. Even though she was miserable and very weak, I could see her energy almost immediately coming back.
Little side story... During this whole time, I was 2 1/2 hours from my family - my wife and daughter. My daughter had literally just started kindergarten and my wife had a job. My wife is a registered nurse... I understood that she had to work and my daughter had to be in school, but I was really missing both of them A LOT at this point... My relationship with my parents was always a little odd. I love them both, but I was never affectionate for some reason with them. The complete opposite is true for my relationship with my wife and daughter. Because of this, I was really in my own little world at this point in time - having to deal with all of the emotions that seemed near impossible to deal with at the time.
Ok - back to the rest of my story...
My mom's first night in the hospital was good. My dad and I were both relieved and glad that she could finally get the help that she needed and what my dad could not do for her at home. We both knew deep down inside that she was bad, but were both just glad to have gotten her into some good care.
I drove home with my dad that night. He wanted to go home - 2 hours away - to sleep in his own bed. I understood and went home with him. We had a good talk about how glad we were to get mom into a hospital and that my dad really did everything he could. It was a good drive. When we got to the house, my dad fed me dinner. He had made Chicken and Dumplings a couple days prior - just the comfort food we were both looking for at the time!
The next morning, we woke up at the crack of dawn and drove back down to the hospital. We walked in and said good morning to my mom. We had just missed her oncologist, who had just made his rounds. My mom seemed a little delirious and said we just missed the doctor and how nice of a guy he was. I was able to hunt him down and let him know that we were there. He called us into a private room. This was actually one of the most relieving and worst conversations I have ever had in my life.
It was in this room that the doctor told us that my moms condition was terminal and that all they could do now was treat her symptoms to make her comfortable. He recommended several options. One of which was to get a referral to hospice. Both my dad and I sobbed while he was telling us the news. It was another surreal moment that I never will forget.
After the conversation, we walked back in to see my mom. She was sleeping in her bed, but we sat besides her anyway. I just wanted to get as much time with her as I could. The next few things kind of blurred together as well... I called my sister to tell her to come down to the hospital... she had her two week old daughter, so it wasn't easy to get her down. I remember waiting for what seemed like hours before she got to the hospital, but I told her the news and that we needed to meet with the hospice nurse.
When we met with the hospice nurse, I remember this being another one of those memories that just kind of stuck with me... As I am writing this, it has been seven months, and bits and pieces keep coming back to me. I think my mind blocked out the most painful things so I could just go into survival mode. Anyway - back on track. In the room were my dad, my sister, brother-in-law, and my new niece.
The conversation was very hard to hear. The nurse was very up front with us and didn't candy coat anything. She gave us all of the stages of death and dying so we could understand what to expect over the next several weeks, months, or whatever it would take. We all cried, but had one piece of salvation in the room that seemed to kind of make things a little better - the new baby. I tell you - if weren't for my new little niece, I know I wouldn't have dealt as well, but I know for sure my sister wouldn't have nearly fared as well as she was.
After our meeting, we all went back to my moms room and talked to her in between naps. She really seemed to be doing very well. She had a good attitude - she was a little out of it, but had a good attitude, nonetheless. We spent the rest of the day between visiting my mom and my sister. My dad and I went to lunch at a local brewery, which was a good escape for us. At the end of the day, we left the hospital. I told my mom that I loved her. For some reason, my "tough guy" attitude had always prohibited me from saying that to her. I don't know where it came from, but I do know that I had always been ashamed of it. Once I spoke it, I felt a huge weight off of my shoulders.
At the end of the day, my dad and I went to my sisters house to have dinner. We drove down to a "roach coach" to pick up a burrito for dinner and ate it back at my sisters house. We were all starving and were all just a little "numb." My dad drove us home that night and we had another good talk. We woke up again the next morning to drive back down to see my mom in the hospital.
When we walked in to see my mom, she as laying there wide awake. We had just missed the doctor again, but she told us about the visit. As we sat there, she looked at me and my dad and said, "Doesn't look too good, does it?" I couldn't contain myself -I broke down crying as my mom did what she had always done best - she consoled me and my dad and said that we will all do just fine. She had always been the rock that just seemed to hold us together and spoke some very inspiring words that seemed to make everything just seem better.
The words she spoke have left me, but I remember getting a warm feeling around me when she spoke. It was the most comprehendable thing she had said in weeks. All I remember is that it made me feel better and that everything would be alright. I remember telling her that I just wanted her to be comfortable and that I would do anything I could.
The rest of the day, we met with hospice again and tried to get a game plan together. We needed to talk to my mom to find out what she wanted to do. Did she want to stay in the hospital or did she want to go home? We had the option of a facility next door for terminal people who couldn't survive a trip home. To me, that sounded the best. It took the burden off of us and left it in the hands of the hospital employees. I knew in the back of my head though, that my mom wanted to go home...
This rest was a very bittersweet day. I wanted to spend as much time with my mom as I could, but at the same time, in needed to take a break. I couldn't bear all of the responsibility myself. I needed to go back to my family and spend time with my wife and daughter.
After most of the day of spending time, I decided it was time to say goodbye and go home. Again, I kissed my mom and told her I loved her and left. It was a very numb ride home. My wife had arranged to have dinner at a family friend's house. I really just wanted to see my own family and not spend time with anybody else, but I also thought it would be a good distraction to take my mind off of things.
I spent the next several days at home with my family. I had also taken several days off from work over the past week or two and I desperately needed to go back to work to get some things taken care of.
OK - that's enough for now. I'll pick up later on this to give myself some time to rest and reflect.
I was at the state fair with my family - my wife, daughter, and mother-in-law. I remember it like it was yesterday. We were sitting in the food area eating an early lunch. I was thoroughly enjoying a huge cinnamon roll. It was one of the first treats I let myself have over the past six months (I was on a diet and losing a ton of weight). I remember getting the phone call from my mom. She said my dad was driving her down to the emergency room in the next town (the hospital in town would amputate an arm if there was a sliver in your pinkie).
She said she couldn't swallow anymore and was completely miserable. For my mom to get to the point that she was miserable enough to go to the hospital, it really must have been bad... I asked her if she wanted me to come over and she assured me she would be fine.
A couple hours later, I got a call from my dad. He said my mom was in for surgery. They were putting a scope down her throat and were going to try to stretch it out. We still don't 100% know what was going on, but I believe it was scar tissue from her radiation treatments that was growing and constricting her throat.
The doctor said that her throat had closed so small he was surprised she could even swallow a drop of water. I was able to talk to my mom later that day after she was done with her procedure. She was pretty out of it and couldn't talk very well, but said she felt much better and was excited to get some food in her. She was sitting in the car while my dad was in a grocery store getting some food for dinner for her.
As the days went by, my mom said she was doing much better, but she was very weak. She couldn't really talk on the phone much and assured me she was fine. I believed her.
I talked to my dad a couple days later and he said that mom couldn't get out of bed. He had to lift her out of bed several times to get up in the morning and she even resorted to just sleeping out in the chair in the family room.
I remember my dad calling me one Saturday morning while I was sitting in my family room playing video games. He said he was scared and didn't know what to do. It seemed that the anesthesia was still in her body and she wasn't gaining any of her energy back. He said that he couldn't get her lifted out of bed in time to make it to the restroom. It was the first time in my life I heard my dad break down and cry. We had talked several times over the past couple of years where he said he was scared and didn't know what to do, but this time was different. It seemed that this was real.
A few days went by and my dad was getting more and more scared. My usual routine was to call my parents on my way to work every morning. I would usually talk to my dad for a few minutes and then finish up with my mom. For the first time ever, my dad said that mom wasn't able to talk on the phone because her throat hurt and she was too weak. Everything was really starting to sink in with me now. This time really was different.
Now, I'm sure I'm leaving something out here because the next few weeks were a complete blur. My sister had been diagnosed with gestational diabetes a couple months prior and her baby was bigger than it should be. Because of this, she was scheduled for induced labor early to ensure her baby wasn't too big. It was September 4th.
My dad asked me if I could come up to his house before I met my sister in the hospital because he needed help getting my mom into the car. I knew I needed to do it, but was still in a little bit of denial, I think. As I started my drive, I remember brining a notebook with me. I decided that I needed to step up and be my moms advocate with her doctor now and start being very aggressive in her care. Between my sister having her baby and starting to help with my moms medical care, I knew I had a very tough time ahead of me.
As I left town, I remember getting stuck in traffic. I heard my dads disappointment in his voice when I said I wouldn't be able to make it in time to help him out. He said he understood and that he would just have to allow himself some extra time for loading my mom up into the car. At this point, he was able to borrow a wheelchair from one of his friends, so he had that on his side at least.
When I got to the hospital, I went up to see my sister. She was admitted the night before and wasn't having much progress. They gave her some medication, but her labor hadn't started yet. Because of everything going on with her, I couldn't tell her the shape mom was in. I didn't want to take away from her glory.
I got a call from my dad that they were pulling up to the hospital and that he needed me to meet him up front to pick my mom up with a hospital wheelchair. When he pulled up, I could tell that my mom wasn't quite as bad as I thought she would be... what a relief. She wasn't great, but wasn't good either.
My parents were fortunate enough to have a friend that had a time-share and let them stay in it that night, so at least they didn't have to drive for a couple of hours each way. That was the last thing she needed right now. After visiting in the hospital for a couple hours, we decided that we should go check into the time share for my parents. By this time, my wife and daughter had shown up to meet me, so we went and got a hotel room as well. We knew we were in for a long night.
At about 10:00pm, I got a call from my brother-in-law. He said that my sister was going to start pushing soon and that we should come down to the hospital. I was there in no time and my parents were there a few minutes later.
We waited out in the waiting room for about an hour before my brother-in-law came out and broke down crying, "It's a girl!" We were all in tears and ecstatic! I completely relived the moment I came out five years earlier saying the same thing to my parents! What a kick in the pants!
We had to hang out about 30 minutes or so until we could go back and see the new baby. I took my mom back in her wheelchair to meet her new granddaughter and my new niece. She was beautiful! It was probably the strongest I had seen my mom over the past several months. While she didn't get out of the wheelchair, she was able to hold her new granddaughter for a couple of minutes. For those few minutes, I think all of our worries were gone.
This is another moment that everything blurred together. I remember I had only been home for a couple of days from the hospital when my my mom back into the doctor or if I went home and got her back into the doctor a couple of days later... Either way - we got my mom in to get another CT Scan. Because her throat was getting tighter again and her appetite wasn't getting any better, I was really fighting for her at this point.
A couple days later, I got a call at work from the wife of parents lifelong friends. I grew up with these people and thought of them as my second set of parents. When I got the call, she told me that I needed to step up to the plate now and that my family really needed me. She prepared me to know that my mom was in very bad shape and that it wouldn't be easy to see her in the condition that she was in.
I remember I was able to take a couple of days off of work and drive over to help out my dad. I really went hard to work and did a lot. I made many doctors calls, ran errands, did grocery shopping, fed my mom milkshakes, talked to her, and did just about everything I thought I could do to help the situation. I remember my mom was on an appetite enhancing medication, but her appetite was still not there. I was able to talk the doctor into prescribing her the medication, "Merniol." This is the pharmaceutical equivalent to THC (Marijuana). We were all desperate and were pulling out all of the stops.
I think it was September 7th that my dad said my mom was in very bad shape and that he really needed help. I jumped in the car from work and started my drive over. I called my moms doctor and said that we were meeting at the office with my mom and that I was insisting that she get admitted to a hospital. She needed IV fluids and some desperate medical attention. I then asked the doctors assistant if she had gotten the results back yet from the CT scan from a couple of days prior. I'll never forget the answer. She was extremely nice and comforting, but at the same time, it was the 2nd worst phone call of my life (the first worst was the next one I would make). She told me that the cancer had spread and that her prognosis was terminal. There was nothing else they could do for her, treatment wise. She said that what we needed to do now as to make her comfortable as possible.
I remember talking to her and feeling so much pain, but relief at the same time. I hate to say it, but I was actually relieved that my mom wouldn't have to go through all of the torture she had gone through over the past three years. There is NO way I could picture myself being ever as strong as she was.
The next call was the worst call I have ever had to make. I called my dad and broke the news to him. It was surreal. I remember telling him that the cancer had spread and that we needed to focus on keeping her out of pain. He cried and I cried. I could tell that he was in another room and didn't want to let my mom know, who was probably sleeping. I told him that he needed to get her loaded into the car and meet me at her oncologists office. At the end of the call, I remember telling my dad that I loved him - it was the first time I ever remember saying it in my adult life.
A couple hours later, we met at the oncologist and my mom really looked bad. She couldn't even support the weight of her own head. She also had her hat off because she didn't like the way her wig felt on her. It was the first time ever that I had seen her bald. I've seen her with very short hair, but never bald. She had always sworn to me that she wouldn't let me see her bald. For her to be at this point, I knew it was really bad.
When we were seen by the oncologist, she said that she didn't realize how bad she was. There was some red tape in getting her admitted to the hospital, but in the long run, she was admitted very quickly.
Once we were in the hospital, I could see my mom's spirits rising. I helped with her admission. My dad and sister were there to help, but it was me with the knowledge and ability to quickly answer questions to get her into a room.
After what seemed like hours of health questions, etc., she was finally settled in to her room. Next on tap were blood work and IV fluids. Because of all the chemotherapy she had been through over the past several years, it proved to be a bit of a chore to get a vein that would work. After a little work by the hospital's best phlebotomist, she was giving blood and getting fluids. Even though she was miserable and very weak, I could see her energy almost immediately coming back.
Little side story... During this whole time, I was 2 1/2 hours from my family - my wife and daughter. My daughter had literally just started kindergarten and my wife had a job. My wife is a registered nurse... I understood that she had to work and my daughter had to be in school, but I was really missing both of them A LOT at this point... My relationship with my parents was always a little odd. I love them both, but I was never affectionate for some reason with them. The complete opposite is true for my relationship with my wife and daughter. Because of this, I was really in my own little world at this point in time - having to deal with all of the emotions that seemed near impossible to deal with at the time.
Ok - back to the rest of my story...
My mom's first night in the hospital was good. My dad and I were both relieved and glad that she could finally get the help that she needed and what my dad could not do for her at home. We both knew deep down inside that she was bad, but were both just glad to have gotten her into some good care.
I drove home with my dad that night. He wanted to go home - 2 hours away - to sleep in his own bed. I understood and went home with him. We had a good talk about how glad we were to get mom into a hospital and that my dad really did everything he could. It was a good drive. When we got to the house, my dad fed me dinner. He had made Chicken and Dumplings a couple days prior - just the comfort food we were both looking for at the time!
The next morning, we woke up at the crack of dawn and drove back down to the hospital. We walked in and said good morning to my mom. We had just missed her oncologist, who had just made his rounds. My mom seemed a little delirious and said we just missed the doctor and how nice of a guy he was. I was able to hunt him down and let him know that we were there. He called us into a private room. This was actually one of the most relieving and worst conversations I have ever had in my life.
It was in this room that the doctor told us that my moms condition was terminal and that all they could do now was treat her symptoms to make her comfortable. He recommended several options. One of which was to get a referral to hospice. Both my dad and I sobbed while he was telling us the news. It was another surreal moment that I never will forget.
After the conversation, we walked back in to see my mom. She was sleeping in her bed, but we sat besides her anyway. I just wanted to get as much time with her as I could. The next few things kind of blurred together as well... I called my sister to tell her to come down to the hospital... she had her two week old daughter, so it wasn't easy to get her down. I remember waiting for what seemed like hours before she got to the hospital, but I told her the news and that we needed to meet with the hospice nurse.
When we met with the hospice nurse, I remember this being another one of those memories that just kind of stuck with me... As I am writing this, it has been seven months, and bits and pieces keep coming back to me. I think my mind blocked out the most painful things so I could just go into survival mode. Anyway - back on track. In the room were my dad, my sister, brother-in-law, and my new niece.
The conversation was very hard to hear. The nurse was very up front with us and didn't candy coat anything. She gave us all of the stages of death and dying so we could understand what to expect over the next several weeks, months, or whatever it would take. We all cried, but had one piece of salvation in the room that seemed to kind of make things a little better - the new baby. I tell you - if weren't for my new little niece, I know I wouldn't have dealt as well, but I know for sure my sister wouldn't have nearly fared as well as she was.
After our meeting, we all went back to my moms room and talked to her in between naps. She really seemed to be doing very well. She had a good attitude - she was a little out of it, but had a good attitude, nonetheless. We spent the rest of the day between visiting my mom and my sister. My dad and I went to lunch at a local brewery, which was a good escape for us. At the end of the day, we left the hospital. I told my mom that I loved her. For some reason, my "tough guy" attitude had always prohibited me from saying that to her. I don't know where it came from, but I do know that I had always been ashamed of it. Once I spoke it, I felt a huge weight off of my shoulders.
At the end of the day, my dad and I went to my sisters house to have dinner. We drove down to a "roach coach" to pick up a burrito for dinner and ate it back at my sisters house. We were all starving and were all just a little "numb." My dad drove us home that night and we had another good talk. We woke up again the next morning to drive back down to see my mom in the hospital.
When we walked in to see my mom, she as laying there wide awake. We had just missed the doctor again, but she told us about the visit. As we sat there, she looked at me and my dad and said, "Doesn't look too good, does it?" I couldn't contain myself -I broke down crying as my mom did what she had always done best - she consoled me and my dad and said that we will all do just fine. She had always been the rock that just seemed to hold us together and spoke some very inspiring words that seemed to make everything just seem better.
The words she spoke have left me, but I remember getting a warm feeling around me when she spoke. It was the most comprehendable thing she had said in weeks. All I remember is that it made me feel better and that everything would be alright. I remember telling her that I just wanted her to be comfortable and that I would do anything I could.
The rest of the day, we met with hospice again and tried to get a game plan together. We needed to talk to my mom to find out what she wanted to do. Did she want to stay in the hospital or did she want to go home? We had the option of a facility next door for terminal people who couldn't survive a trip home. To me, that sounded the best. It took the burden off of us and left it in the hands of the hospital employees. I knew in the back of my head though, that my mom wanted to go home...
This rest was a very bittersweet day. I wanted to spend as much time with my mom as I could, but at the same time, in needed to take a break. I couldn't bear all of the responsibility myself. I needed to go back to my family and spend time with my wife and daughter.
After most of the day of spending time, I decided it was time to say goodbye and go home. Again, I kissed my mom and told her I loved her and left. It was a very numb ride home. My wife had arranged to have dinner at a family friend's house. I really just wanted to see my own family and not spend time with anybody else, but I also thought it would be a good distraction to take my mind off of things.
I spent the next several days at home with my family. I had also taken several days off from work over the past week or two and I desperately needed to go back to work to get some things taken care of.
OK - that's enough for now. I'll pick up later on this to give myself some time to rest and reflect.
Friday, April 11, 2008
My life - the rollercoaster
To tell the truth, I think my life has been probably more or less worse than I ever could have imagined it ever being over the past few years. Just over three years ago, everything seemed to be going perfectly. My wife and daughter had just purchased our dream home on a cul-de-sac that we pictured ourselves living in for the rest of our lives. It was pretty much a bit of a fixer upper as its previous owners went through a divorce and the wife and teenage daughters were left to take care of the house on their own... and have their own makeshift animal rescue. Needless to say, we had A LOT of cleaning/maintenance to do before we could kick back and enjoy the house.
About four or five months later, when things seemed to be going perfectly, I got a phone call from my parents. They had just gotten back from a cruise and my mom was going to the doctor because she had been coughing up blood over the past couple of weeks. They didn't want to tell me before they went on the cruise, in fear of scaring me. Well, she did go to the doctor and my worst fears ever were reality. She had a chest x-ray taken, which showed she had some masses in her lungs. She was scheduled for a lung biopsy and went in for surgery within the next week.
About a week later, my fears were confirmed. She had non-small cell carcinoma. My parents live in a rural county in Northern California that has mediocre health care to say the least. To make matters worse than they already are, my parents are of the generation that does whatever the doctor says and doesn't question it.
My mom's initial oncologist told her that there wasn't much they could do as far as treatment and that she didn't have much more than a year to live. I was in a panic to say the least. Myself, living in a large city with a cancer center and university hospital, wasn't going to take this news lying down. My wife, being a registered nurse, also was on board with helping me in making sure we did due diligence in researching our options.
To make a long and painful story short, we found that the cancer center where we live, was able to take her in for an evaluation. My parents came over and I went to the initial appointment with the oncologist. The oncologist was very optimistic and said that there were treatment options available that would either slow down the cancer's growth or eliminate it altogether.
She would be required to have radiation therapy Monday through Friday and chemotherapy once a week. Since they lived four hours away, the only available option was for them to move in with us during treatment. I was excited and proud to be able to provide a place for my parents to stay while my mom went through her cancer treatment. How many people get to provide such a generous and nice gift to their parents? I was very proud and excited (despite the circumstances) to say the least.
Well, I was excited to have them with us, despite the circumstances. All I can remember was the attitude my mom had through the whole ordeal. She was a trooper and took this whole thing on head-on. She knew she had a battle in front of her, but she was up to tackle it.
Looking back on it, it was only a couple of months of aggressive treatment and after that, they only needed to come over once every week or two for chemotherapy. I can clearly remember them coming over for my moms birthday on June 27th and my sister had made the cake. It was a yellow round cake with a triangle cut out of it to make it look like Pac Man. There were several yellow cupcakes laid out in front of the cake that Pac Man was eating - just like in the video game. You see - my mom's mantra was that the chemotherapy was like Pac Man eating all of the bad cancer cells in her body. That was just how her attitude was... always optimistic about everything.
Looking back at one of my other blogs, I saw that within two or three months into her treatment, my mom had only lost 12 pounds and her hair had just started to fall out in little clumps on her 58th birthday. Yes - she was young...
Well, the months went by and my mom seemed to be doing great! We were all optimistic about her treatment and prognosis. Her doctor at the cancer center was great and very encouraging with every visit. She kept getting MRI's, CT and PET Scans to see how the cancer was doing. Every result was better than the last. It was actually shrinking and stabilizing!!! We were all very ecstatic!
About a year into treatment, though, we got some very discouraging news about her cancer. One of her last scans showed that the cancer had spread into her thigh bone. This is where things get really fuzzy for me. I remember for the several months prior to this, she was having a lot of pain in her thigh and was to the point where she could barely walk anymore. She was still being treated by her oncologist at the cancer center, but was assured that the pain was muscles and that there was nothing really to worry about.
Because they were sick and tired of doing all of the driving back and forth, my mom and dad decided it would be better for them to try a cancer center in another town that was closer to them. They were very happy with the doctor and his aggressive attitude and willingness to try new treatments that her previous oncologist didn't want to try. It was this doctor that did a full body scan and found that the pain in my moms leg was actually bone cancer.
He put her on a new chemotherapy drug, more radiation, and bone building medications. My mom, being the family rock, didn't even get phased by this. I was pretty devastated to say the least. My mom, however, kept tugging along with her usual great attitude!
A couple of months later, after her leg was doing better, we got hit with another blow. It seems that the cancer had spread to her brain. The doctor was very optimistic about this as well and changed treatment plans and moved forward with brain radiation. He said that it was small enough that it was still very treatable.
Now, I don't know if this was how my mom really was or if she was still being the family rock. The only time I ever saw or heard her cry was the first day she told me she had cancer. I started crying on the phone and she started to cry as well.
To go back a little bit in history, this whole ordeal is really scary for me. You see, my grandpa - my moms dad - died of lung cancer. My uncle - my moms brother - died of lung cancer. Oh - one more thing - about six months prior to her diagnosis, my dad had just finished up his treatment of prostate cancer. Not only is this a huge wakeup call for me, but it is pretty scary to know that my chances of having cancer are actually pretty high.
OK - I digressed a little... One or two days after Christmas 2006, my sister called me to tell me she was pregnant! She had been married for a couple of years and was taking her time in starting her family. Needless to say, my mom was very excited! Although she already had a grandchild from me, I think it was a little different for her daughter to be having a kid. With all of the stuff my mom had been through, this was a very welcome surprise!
Several months later was my moms 60th birthday. It was a huge milestone for her. I remember her talking years ago that she was dreading her 60th birthday, so I reassured her on her birthday that it was "just another day." She responded by saying that she is just glad that she was able to make it to her 60th birthday. That really put things in perspective for me...
As the summer progressed and my sister got more and more pregnant, my mom started to lose a lot of weight. She had all but lost her appetite and was starting to become weaker and weaker. She had a lump in her throat that seemed to hurt or bother her when she did eat.
Because my parents live so far away, it isn't very often that we got to go over and see them, so it had been over a month since I had seen my mom when we went to our annual vacation to the Russian River for a few days. I remember pulling up and seeing my mom sitting in her camp chair by their travel trailer and she looked like she had shrunk to nothing. She was the smallest and skinniest I had ever seen her. It really took the wind out of me.
She wasn't strong enough the whole time we were at the river to come down to sit in the sun with us, so I tried my hardest to go up and see her as often as I could. It was hard to balance both families (my wifes family was there as well). It was also hard for me to see my mom without her hair - she had lost almost all of it and it was starting to slowly grow back, so it looked like she got a very close haircut.
We got through the few days at the Russian River and went back about our business. Around a month later was my sisters baby shower. I pulled up to my sisters house and saw my mom walking in. I didn't recognize her. She looked at us and waved and I was frozen in the car. It pains me to even think about what I saw while writing this. This was real. She was deteriorating and there was nothing I could do about it. I even remember getting out of the car and giving her a hug. She was all skin and bones, but still had that ever present rock-solid attitude that nothing was wrong.
That's enough for this post... I'll come back later to pick up where I left off.
About four or five months later, when things seemed to be going perfectly, I got a phone call from my parents. They had just gotten back from a cruise and my mom was going to the doctor because she had been coughing up blood over the past couple of weeks. They didn't want to tell me before they went on the cruise, in fear of scaring me. Well, she did go to the doctor and my worst fears ever were reality. She had a chest x-ray taken, which showed she had some masses in her lungs. She was scheduled for a lung biopsy and went in for surgery within the next week.
About a week later, my fears were confirmed. She had non-small cell carcinoma. My parents live in a rural county in Northern California that has mediocre health care to say the least. To make matters worse than they already are, my parents are of the generation that does whatever the doctor says and doesn't question it.
My mom's initial oncologist told her that there wasn't much they could do as far as treatment and that she didn't have much more than a year to live. I was in a panic to say the least. Myself, living in a large city with a cancer center and university hospital, wasn't going to take this news lying down. My wife, being a registered nurse, also was on board with helping me in making sure we did due diligence in researching our options.
To make a long and painful story short, we found that the cancer center where we live, was able to take her in for an evaluation. My parents came over and I went to the initial appointment with the oncologist. The oncologist was very optimistic and said that there were treatment options available that would either slow down the cancer's growth or eliminate it altogether.
She would be required to have radiation therapy Monday through Friday and chemotherapy once a week. Since they lived four hours away, the only available option was for them to move in with us during treatment. I was excited and proud to be able to provide a place for my parents to stay while my mom went through her cancer treatment. How many people get to provide such a generous and nice gift to their parents? I was very proud and excited (despite the circumstances) to say the least.
Well, I was excited to have them with us, despite the circumstances. All I can remember was the attitude my mom had through the whole ordeal. She was a trooper and took this whole thing on head-on. She knew she had a battle in front of her, but she was up to tackle it.
Looking back on it, it was only a couple of months of aggressive treatment and after that, they only needed to come over once every week or two for chemotherapy. I can clearly remember them coming over for my moms birthday on June 27th and my sister had made the cake. It was a yellow round cake with a triangle cut out of it to make it look like Pac Man. There were several yellow cupcakes laid out in front of the cake that Pac Man was eating - just like in the video game. You see - my mom's mantra was that the chemotherapy was like Pac Man eating all of the bad cancer cells in her body. That was just how her attitude was... always optimistic about everything.
Looking back at one of my other blogs, I saw that within two or three months into her treatment, my mom had only lost 12 pounds and her hair had just started to fall out in little clumps on her 58th birthday. Yes - she was young...
Well, the months went by and my mom seemed to be doing great! We were all optimistic about her treatment and prognosis. Her doctor at the cancer center was great and very encouraging with every visit. She kept getting MRI's, CT and PET Scans to see how the cancer was doing. Every result was better than the last. It was actually shrinking and stabilizing!!! We were all very ecstatic!
About a year into treatment, though, we got some very discouraging news about her cancer. One of her last scans showed that the cancer had spread into her thigh bone. This is where things get really fuzzy for me. I remember for the several months prior to this, she was having a lot of pain in her thigh and was to the point where she could barely walk anymore. She was still being treated by her oncologist at the cancer center, but was assured that the pain was muscles and that there was nothing really to worry about.
Because they were sick and tired of doing all of the driving back and forth, my mom and dad decided it would be better for them to try a cancer center in another town that was closer to them. They were very happy with the doctor and his aggressive attitude and willingness to try new treatments that her previous oncologist didn't want to try. It was this doctor that did a full body scan and found that the pain in my moms leg was actually bone cancer.
He put her on a new chemotherapy drug, more radiation, and bone building medications. My mom, being the family rock, didn't even get phased by this. I was pretty devastated to say the least. My mom, however, kept tugging along with her usual great attitude!
A couple of months later, after her leg was doing better, we got hit with another blow. It seems that the cancer had spread to her brain. The doctor was very optimistic about this as well and changed treatment plans and moved forward with brain radiation. He said that it was small enough that it was still very treatable.
Now, I don't know if this was how my mom really was or if she was still being the family rock. The only time I ever saw or heard her cry was the first day she told me she had cancer. I started crying on the phone and she started to cry as well.
To go back a little bit in history, this whole ordeal is really scary for me. You see, my grandpa - my moms dad - died of lung cancer. My uncle - my moms brother - died of lung cancer. Oh - one more thing - about six months prior to her diagnosis, my dad had just finished up his treatment of prostate cancer. Not only is this a huge wakeup call for me, but it is pretty scary to know that my chances of having cancer are actually pretty high.
OK - I digressed a little... One or two days after Christmas 2006, my sister called me to tell me she was pregnant! She had been married for a couple of years and was taking her time in starting her family. Needless to say, my mom was very excited! Although she already had a grandchild from me, I think it was a little different for her daughter to be having a kid. With all of the stuff my mom had been through, this was a very welcome surprise!
Several months later was my moms 60th birthday. It was a huge milestone for her. I remember her talking years ago that she was dreading her 60th birthday, so I reassured her on her birthday that it was "just another day." She responded by saying that she is just glad that she was able to make it to her 60th birthday. That really put things in perspective for me...
As the summer progressed and my sister got more and more pregnant, my mom started to lose a lot of weight. She had all but lost her appetite and was starting to become weaker and weaker. She had a lump in her throat that seemed to hurt or bother her when she did eat.
Because my parents live so far away, it isn't very often that we got to go over and see them, so it had been over a month since I had seen my mom when we went to our annual vacation to the Russian River for a few days. I remember pulling up and seeing my mom sitting in her camp chair by their travel trailer and she looked like she had shrunk to nothing. She was the smallest and skinniest I had ever seen her. It really took the wind out of me.
She wasn't strong enough the whole time we were at the river to come down to sit in the sun with us, so I tried my hardest to go up and see her as often as I could. It was hard to balance both families (my wifes family was there as well). It was also hard for me to see my mom without her hair - she had lost almost all of it and it was starting to slowly grow back, so it looked like she got a very close haircut.
We got through the few days at the Russian River and went back about our business. Around a month later was my sisters baby shower. I pulled up to my sisters house and saw my mom walking in. I didn't recognize her. She looked at us and waved and I was frozen in the car. It pains me to even think about what I saw while writing this. This was real. She was deteriorating and there was nothing I could do about it. I even remember getting out of the car and giving her a hug. She was all skin and bones, but still had that ever present rock-solid attitude that nothing was wrong.
That's enough for this post... I'll come back later to pick up where I left off.
Friday, April 4, 2008
First Things First
Ok - It's been a while since I've done the whole blogging thing, but I thought it was time to start writing to get some stuff out there that has been bottled up inside of me lately.
I have a couple other blogs out there that I doubt anybody has ever or even cares to ever see. I started focusing mainly on posting my random thoughts just because I thought it was cool to be posting something on the internet and then I proceeded to write about my family and recent pictures I had taken.
Now, it has been a couple of years (more or less) since my last blog entry and I am hoping I am up and ready to start posting some relevant things.
Where do I start though? I've always enjoyed writing - heck, I even got an A+ in my creative writing class. The teacher encouraged me to pursue a writing career even though I had no desire to do so. I think I can write very good non-fiction with a little twist. My creative juices were completely stripped from me when my little sister was born. She is the artist in the family that has all of the outstanding ideas and creative juices that just seem to ooze out of her.
OK - I've got my mind made up on where I'll be starting... it won't be easy, but I think it is something I need to do for myself.
I have a couple other blogs out there that I doubt anybody has ever or even cares to ever see. I started focusing mainly on posting my random thoughts just because I thought it was cool to be posting something on the internet and then I proceeded to write about my family and recent pictures I had taken.
Now, it has been a couple of years (more or less) since my last blog entry and I am hoping I am up and ready to start posting some relevant things.
Where do I start though? I've always enjoyed writing - heck, I even got an A+ in my creative writing class. The teacher encouraged me to pursue a writing career even though I had no desire to do so. I think I can write very good non-fiction with a little twist. My creative juices were completely stripped from me when my little sister was born. She is the artist in the family that has all of the outstanding ideas and creative juices that just seem to ooze out of her.
OK - I've got my mind made up on where I'll be starting... it won't be easy, but I think it is something I need to do for myself.
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