Never Say Goodbye
I've tried to put off writing this post, like if I never wrote the words it wouldn't make it true. I think I'm finally ready to walk everyone through my journey over the last two years as I watched my mom fight for her life and lose.
It all started two years ago - almost two years ago to the day. My mom and I spent a great weekend together and she felt like she was getting a pretty serious cold. We went to a ladies event at our favorite winery. Sally, the winery manager went out of her way to make sure I still enjoyed the day even though I was pregnant. My mom didn't feel well so she didn't drink much wine either, she didn't eat much, and had a couple coughing fits. It just seemed like one of those bad fall colds that could knock you out for a couple days.
Later that week I had gotten the call that she was in the hospital with pneumonia. I drove up that weekend and spent the weekend with her in the hospital. She was coughing a lot, slept a lot, typical for someone with pneumonia.
I went back home Sunday and checked in with her multiple times a day just to see how she was. At one point she said they had pulled fluid from her lungs to test what type of pneumonia she had and they had found cancerous cells. I talked her through the fact that all of us carry cancerous cells, it doesn't mean we have cancer. We'd just wait for the results and move forward from there.
I knew she would call me that Thursday with the results. I was at our friends the Ensslin's to give them a check for a crib I was buying from them when I got a call from her. I quickly excused myself and went outside to the car and called her back. My mom cried as she said the words "I have stage 4 lung cancer". My response was a strong, clear, "What next, what are the steps, how do you feel, what are you thinking?" My mom gained her strength and just said, well, I don't know enough yet. I need to do research. The Dr. explained I have 3 months without treatment, a year with treatment so I want to get a second opinion. I just tried to draw feelings from my mom but in typical Anita fashion she guarded herself in an effort to protect me.
I drove the 2 blocks home, walked in the door, and saw my friend Kaitlyn who was living with us at the time and then all the emotion hit me. I just closed the door and said "My mom has stage 4 lung cancer and only has a few months". She ran to me and I just fell to the kitchen floor sobbing the most heartfelt, empty deep sobs I'd ever felt in my life. Sobs I wouldn't feel again until the day she died.
Kaitlyn called Kyle who was at work, he immediately left and came to be by my side. I couldn't talk, I couldn't think, all I could do was cry. I kept saying over and over again, this isn't real. This doesn't happen in real life. This is the kind of stuff that happens to other people. It's not fair, she's my best friend, I'm pregnant, I need my mommy....this just can't be real. I just laid in bed all night crying. Kyle and I finally got dressed at 5:00a.m. and drove to my mom's house. It was the week before Thanksgiving.
Just being with her I felt so much better. The problems and fears seemed to go away. My mom seemed fine, she didn't seem like she was dying. This false sense of security would surround me for the next year and a half.
My mom did a lot of research and ended up meeting with a Dr. in the Bellin Network. This Dr. explained to my mom that she felt she could go through treatment and extend her life up to 3 years. I offered that my mom move in with me, go to the cancer centers here or in Madison, my brother offered the same as he lives by the Cancer Center of America in Phoenix. In the end she chose to stay in Green Bay, stick with her new Dr. and go to the Cancer Center there in Green Bay. She wanted to stay in her home, keep working, give herself the motivation to push through, not just sit around and wait to die.
She started her chemo treatments December 14th. It was an aggressive form of chemo that would last until the last week of March. She was told she would lose her hair, be sick, lose weight, etc. Her hair only thinned and never completely fell out. She lost some weight, but she was already skinny so it wasn't that noticeable. If you never knew she was sick, you'd never know. This treatment shrunk her tumors in her affected lung 20%. Progress. Hope.
We scheduled my baby shower to take place as soon as chemo was done - 2 weeks before my due date - perfect timing for my mom to feel relatively well after her treatments.
She was tired throughout, had some nausea. I never understood the extent of her side effects because she was one of those people who kept her thoughts and feelings to herself to protect you. Even if you tried to pry out emotions or negative thoughts she refused to share. The week before she died I found a notebook where she documented her side effects every day from the first day of her chemo. The effects were much more dramatic than anything she ever let on to. Constipation, mouth sores, hair loss, nausea, fainting, dizziness, foods tasting bad or different, a constant metal taste in her mouth, shakiness.
After that first bout of strong chemo she was then moved to a maintenance chemo treatment. This treatment would just hold the cancer where it was. She went every other Tuesday for the next year. She gained some weight, her hair came back. Yet again, if you didn't know she was sick you'd never know she was sick.
She was there for my son to be born. They joy in her face as she watched him come out and then be placed in my arms the first time was something I will never forget. She flew to Arizona for my brother's wedding. Their first dance was so emotional. We were all crying. We all knew her time would come and we wanted to savor the moment forever.
After the trip to Arizona for his wedding she learned she had gotten a blood clot in her leg. Then she went in for a follow-up scan and she learned the cancer in her left lung had come back to where it was back when she was diagnosed. She coughed a lot. One night her and I had gone to the Green Bay Symphony Orchestra and she coughed quite a bit. Of course she looked healthy and the jerk in front of us kept looking back and giving her the stink eye. At intermission I was waiting for her to use the restroom so I could say "Don't worry asshole, you can't catch lung cancer so stop staring at my mom you fucking dick" Little did I know she was trying to get me to go so she could say the same, maybe with less swear words, but lucky for him he got up and moved to some other empty seats. I came home furious, I just called Kyle and vented. I felt terrible for her.
In May we learned the cancer had spread to her brain, a common next step for lung cancer. I called my brother and told him I thought he should still come home while she was still doing relatively well. She finished a month of radiation right when Wayne got here. We had the absolute best week of our lives. Hanging out, joking, laughing, doing what we all do best...being spoiled by our mom who loved her kids more than anything in life.
After he left she started another very aggressive form of Chemo. This chemo completely knocked her out. She lost all her hair, she was sicker, slower, called in to work more. I remember telling her, mom, if you want to stop, stop at any time. Don't do this for me, Wayne or Nixon. Stop whenever you're ready. Her response was, well, I'm not ready to give up yet.
When my mom lost her hair she lost a lot of her confidence. Think about when you have a bad hair day - it really sets up how you react to everything that day. I had a super embarrassing experience the week I had Nixon - I am so grateful my mommy was there for me that day. It was my 30th birthday. I had a 5 day old baby. She wanted to take me out to a nice dinner to celebrate but on the way we stopped at Target to load up on some things I needed. Nixon screamed his head off the entire time. I retreated to the parking lot to nurse him, a task I still didn't know what the hell I was doing, and I just called Kyle crying that I was going to end up going to the McDonald's drive thru for my birthday. My mom made it out to the car with everything we needed and I got out of the back seat to get into the driver's seat right when a man came along the side of my car. He gave me a strange look and I looked down to see that my shirt was still above my chest and my flabby nasty Just-Had-A-Baby belly was hanging out. I got in the front seat and balled for 15 minutes. My mom rubbed my back, soothed me, told me it was fine, that we don't know him from Jesus. We ended up going to Maggiano for dinner, Nixon slept the entire time, and we got a free dessert sampler.
Well, my mom called me one day and said "OMG, I have an embarrassing story that matches your boob flash at Target" She proceeded to tell me she got out of the car to go get her nails done and a huge gust of wind kicked up and sent her wig tumbling across the parking lot like a tumbleweed. She had to run across the parking lot, bald, humiliated, chasing her wig. You win Mom.
She never showed me her head until one day I came home, I was doing my bi-weekly visit and was running errands for her and she had her scarf off and forgot. It was very shocking at first, but I didn't say anything for fear of embarrassing her. She all of a sudden said, "I'm so sorry, I forgot I took it off" and I replied, "Don't worry. Bald is beautiful. You've earned that and I see it as a badge of courage. It shows everyone you're a fighter. Wear it proudly mama." After that she never covered her head when I was home. I think she took those words to heart. I've never been so proud of her or thought she looked more beautiful. I would kiss her shiny dome multiple times a day just to say to her - I love you, bald head and all.
The chemo wasn't working and we all knew it but no one said anything. It was the elephant in the room. She called me one day to explain she was going to go onto disability from work starting August 20th. This was hard to hear because it was my mom admitting she was sick and that she couldn't work any more. I tried to talk to her about taking the time off to relax, craft, enjoy her garden, enjoy her books. Just breathe. Her company had just built a brand new office and their first day in the office was her last day. She got to work in her brand new office one day. A couple weeks later I stopped into the offices to drop off a wedding gift for a co-worker and they gave me the tour. Walking into the beautiful office that would have been hers was very hard. It was so unfair she didn't get to enjoy that corner office with big beautiful windows.
Speaking of her work, her co-workers were unbelievable. They covered her medical until the day she died. She never had to go on Cobra. They paid for her cell phone until the day she died as well. This was huge since treating cancer isn't cheap - $20,000 a week is about what it costs. They made her a beautiful poem and framed it that explained what she meant to them. They drove out to the house to visit her. Co-workers from their offices in Germany sent cards, letters, gifts. They threw her a "retirement" party. They were the reason why she held on so long and I'm forever grateful for their love, support and patience with her while she fought for her life. Any time a new diagnoses came along they'd send her words of encouragement that she was always awestruck by. She'd always show them to me and be so amazed by "her boys" at the office.
I sent her a cookie bouquet to celebrate her retirement. It was hard to acknowledge why she was leaving work and I was trying to put some lipstick on that Cancer Pig.
A week later she was admitted to the hospital. 4 days after that I drove her home for the last time. She was officially on hospice. Oxygen. A wheelchair. Waiting to die.
When we were leaving the hospital we waited in the lobby for valet to pull up the car and there was a couple waiting for valet as well, getting ready to take home their brand new baby. There my mom sat in her wheelchair, oxygen on, small and frail with her bald head covered in her scarf and I thought to myself, wow, here is life and death all in one small space. One life about to begin and another about to end.
My mom was so frustrated and I just didn't know what to say to her to make it better. On the drive home I looked over and she was drinking in the sunshine. I asked her what she was thinking, she replied she didn't know. She didn't know how to process it all. We stopped at McDonald's Drive through and went home. It was the last time she would ever pass into the house through the front door. Kyle was at her house that day while the hospice company came to set up her hospital bed, oxygen concentrator and all the other things that went along with getting her settled in to wait to die.
My job was also unbelievable. Their words were TIKI torches will always be here. Go home, be with your mom. I was able to spend all my time with her. I made all her meals, helped her to the restroom, helped her shower, made schedules for caretakers, managed medications, entertained her, talked, laughed. I'll never forget those tender moments when she was humiliated that I had to help her do daily tasks and I would just soothe her, rub her back, legs, feet. Do whatever she needed. There were of course incredibly hard times - when she had to use the commode when she could no longer use the regular toilet and I was literally fighting puking as I cleaned it out but I knew I couldn't make a sound for fear of embarrassing her or hurting her feelings. When, for the first time in my life I was over my patience threshold with Nixon and screaming at him, putting him in his playpen just to keep him away from me so I didn't hurt him for just doing what toddlers do. I was ashamed of myself as a mom but I was using all my patience on my mom something had to give. My friends and family would come take Nixon for a couple days and I would ache with missing him.
There was a steady decline, every day. She started getting very confused, very lost. She didn't know what day it was. She slept constantly, rarely ate. She didn't realize she would fall asleep mid-task. It would take over an hour just to get her to the restroom. I'd wake her up and ask if she wanted to use the restroom. She would say yes, and start to move her legs. She'd fall asleep. 10 minutes later I'd rub her back, slowly wake her up, and then she'd move another inch or two and fall asleep again. Repeat. She'd ask "How long do I fall asleep? I don't know why I keep doing that!" and I would just reply, not long mom, it's OK, no worries.
I tried to find the humor in it all - if I didn't I would crack. I'd giggle when I'd be reheating the same plate of waffles for the 5th time of the day because she'd always think it was a new day. Who was I to tell her it wasn't a new day when she'd be robbed of so many sunrises. Sometimes I wonder if she really knew at the end how long she was on hospice. It had to feel like years. It's a shame we shoot horses for less but watch our loved ones struggle, lose their dignity, fight pain and fear.
I was most scared of leaving her because I felt like the second I'd leave she would die. I wanted to be there for her, maybe more so for me than for her. After a month, all the stress was adding up and I finally needed a break - we had a friends wedding in Manitowoc and it was a great release. It was like I was getting this cloud around my head and I was getting too frustrated with everything and just being out for a night with friends was great to clear my head. When I was getting ready to leave I knew it was the last time I'd see her alive. I kissed her probably 20 times. I would pack something, walk by, kiss her again, repeat. She was laughing and told me to stop and I said nope! When I was ready to finally leave I said "By Mama, don't go anywhere without me, Okay?" I wanted to somehow say "Don't die without me". I then went to Milwaukee for two days and on the morning of the second day my phone rang. I saw my aunt's name and I just knew what the call was going to be.
My friend Christina was in my office and she just held my hand while I calmly asked my aunt what happened. My mom had woken up that morning and was struggling to breathe. Vickie fought to get some morphine in her mouth to calm her down. She finally calmed down and then she checked on my mom an hour later and she was dead.
I hung up the phone and my head swirled. My mom was dead. The woman who I needed for everything, who I talked to every day, who was my world, was dead. I'd never again be able to share my highs and lows with her. I was an adult who felt like an orphan.
I left the office in a blur, picked up Nixon and then Kyle drove us to her house. I cried quietly, soft flowing tears the two and a half hours to her house. We opened the front door and Nixon said "Mama???" (his words for Gramma) and he ran into the living room where her hospital bed was. Her bed was empty. It reflected my heart at that time. I grabbed her robe that was draped over her wheelchair and I laid in her bed hugging her robe and those deep, hollow, earth rattling sobs came back. The sobs I hadn't felt since the day she told me she had 3 months to live. I cried so hard I wanted to puke.
The rest of the week I just felt dull. Everyone offers sympathies and kind words and you just want to scream at them "SHUT THE FUCK UP, YOUR WORDS MEAN NOTHING!!!! MY MOM IS FUCKING DEAD!" But of course you reply, thank you so much, that means so much. I meant it, everyone's support meant a ton, but that doesn't bring my mama back. It doesn't let me feel the warmth of her skin again. It doesn't allow me the chance to see the twinkle in her eye. I never felt so alone but yet supported by so many all at once.
Funerals are bull shit. There. I said it. It's cruel and unusual punishment for those who loved the person who passed away. Yeah, ok, I'll stand up here for 2 hours while everyone reminds me how wonderful my mom was. The tears never stopped. It was so exhausting emotionally. Then I'd be taken aback by all of my friends who drove all that way up to extend their support, love and sympathy. Who knew so many people loved my mom, supported me, wanted to share in our grief. It was overwhelming.
Before the service starts the family was to gather at her casket for the last time. I stared at her beautiful face. I tried to take in all the details, drink it all in and lock it away. Her hands, her mouth, her frame. I knew it was the last time I would see her physically. Everyone started to walk away and I wanted to kiss her so bad but I was scared what it would feel like. I knew she wouldn't feel like my mom and I wasn't sure I wanted to feel her cold skin and I was scared that feeling would be forever in my mind, but I also didn't want to walk away without giving her one last kiss. I leaned over and kissed her lips and it was hard, cold and felt like plastic. It was strange, but I needed her to feel my last kiss, my last effort of love for her.
After the ceremony the pall bearers carried her small body out to the hearse and the church bell rang solemnly, every minute. It was beautiful and sad all at once. I was leaning on Kyle's shoulder crying and all of a sudden my aunt's phone rang - her ringer was "Don't Worry, Be Happy". I was a sign from my mom, and it was amazing. I stepped over to my brother and I grabbed him and hugged him and cried so hard. I said to him "She was the best mom. Ever." and he replied "Totally Dude". We just hugged each other and cried for so long. It was so final.
I've been going through a lot of emotions since that day. Sadness, grief, relief, guilt. I wonder if I was there enough for her, if I did enough. Guilt for being grateful to have my own life back after 2 years of driving up every other weekend and the most recent month long battle. A little denial that she's really dead. Sometimes I feel like she's just up in Green Bay. I go to email her and realize she's not there, so I send my emails to Wayne. I'm not sure he cares that Nixon says "Poop" but unfortunately for him I'm telling him now.
2 months before she got very sick she recorded one of those books you record your voice reading. It's that kids book "Guess How Much I Love You". I pulled it out last week Wednesday and read it to Nixon before bed and he was in awe. He kept saying "Mama?" and I sat back and just cried. It was so nice hearing her voice. One of my fears is losing the sound of her voice and this relieves that fear. Nixon demands that we read it every night and every morning. You can't even change his diaper in the morning - we HAVE to read the bunny book. He points and screams and you grab it, sit down, and he giggles and squeeks with joy. It's so sweet but it also breaks my heart at the same time.
I have initiated the last steps of this chapter - finalizing the design of her headstone and writing this blog post. I've cried the entire time I wrote it, and I knew it would be hard, but here it is. On paper. My thoughts, experience, emotions. I'm not sure if this post is for anyone other than myself, but this is how I felt throughout. It's hard but relieving all at once.
I am struggling with her headstone. It's the nail in the coffin for lack of better words. It's so final. It will stand at her grave site for eternity. It's all that will remain of my mom, it's the only thing that strangers will have to learn about the legacy of a woman who was so much to so many. How to you capture all that in such a small space?
Well. There's that. I'm going to post this now without pictures and I'll add them in as I have time. I just want everyone to read her story and to know that she fought the hardest battle of anyone's life with grace and strength. Here's to you Mama. XoXo Cj
My Mom's Obituary: http://www.mcmahonfh.com/fh/obituaries/obituary.cfm?o_id=1659042&fh_id=13643
It doesn't even touch the iceberg of who she was...but I promise to be the reflection of her in everything I do.
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| The Family, 1985 |
It all started two years ago - almost two years ago to the day. My mom and I spent a great weekend together and she felt like she was getting a pretty serious cold. We went to a ladies event at our favorite winery. Sally, the winery manager went out of her way to make sure I still enjoyed the day even though I was pregnant. My mom didn't feel well so she didn't drink much wine either, she didn't eat much, and had a couple coughing fits. It just seemed like one of those bad fall colds that could knock you out for a couple days.
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| The Family, 1986 |
Later that week I had gotten the call that she was in the hospital with pneumonia. I drove up that weekend and spent the weekend with her in the hospital. She was coughing a lot, slept a lot, typical for someone with pneumonia.
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| Wedding Rehearsal Dinner, June 25 2010 |
I went back home Sunday and checked in with her multiple times a day just to see how she was. At one point she said they had pulled fluid from her lungs to test what type of pneumonia she had and they had found cancerous cells. I talked her through the fact that all of us carry cancerous cells, it doesn't mean we have cancer. We'd just wait for the results and move forward from there.
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| Wedding Day, June 26, 2010. We would learn 4 months later of the disease. |
I knew she would call me that Thursday with the results. I was at our friends the Ensslin's to give them a check for a crib I was buying from them when I got a call from her. I quickly excused myself and went outside to the car and called her back. My mom cried as she said the words "I have stage 4 lung cancer". My response was a strong, clear, "What next, what are the steps, how do you feel, what are you thinking?" My mom gained her strength and just said, well, I don't know enough yet. I need to do research. The Dr. explained I have 3 months without treatment, a year with treatment so I want to get a second opinion. I just tried to draw feelings from my mom but in typical Anita fashion she guarded herself in an effort to protect me.
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| The Family, June 26, 2010 |
I drove the 2 blocks home, walked in the door, and saw my friend Kaitlyn who was living with us at the time and then all the emotion hit me. I just closed the door and said "My mom has stage 4 lung cancer and only has a few months". She ran to me and I just fell to the kitchen floor sobbing the most heartfelt, empty deep sobs I'd ever felt in my life. Sobs I wouldn't feel again until the day she died.
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| My Cousin's wedding, August 28, 2010. I had just learned that week I was pregnant. |
Kaitlyn called Kyle who was at work, he immediately left and came to be by my side. I couldn't talk, I couldn't think, all I could do was cry. I kept saying over and over again, this isn't real. This doesn't happen in real life. This is the kind of stuff that happens to other people. It's not fair, she's my best friend, I'm pregnant, I need my mommy....this just can't be real. I just laid in bed all night crying. Kyle and I finally got dressed at 5:00a.m. and drove to my mom's house. It was the week before Thanksgiving.
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| My mom, 2 aunts and grampa with Nixon |
Just being with her I felt so much better. The problems and fears seemed to go away. My mom seemed fine, she didn't seem like she was dying. This false sense of security would surround me for the next year and a half.
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| Door County, Girls Weekend. Fall 2011 |
My mom did a lot of research and ended up meeting with a Dr. in the Bellin Network. This Dr. explained to my mom that she felt she could go through treatment and extend her life up to 3 years. I offered that my mom move in with me, go to the cancer centers here or in Madison, my brother offered the same as he lives by the Cancer Center of America in Phoenix. In the end she chose to stay in Green Bay, stick with her new Dr. and go to the Cancer Center there in Green Bay. She wanted to stay in her home, keep working, give herself the motivation to push through, not just sit around and wait to die.
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| Cedarburg Strawberry Festival. Summer 2011 |
She started her chemo treatments December 14th. It was an aggressive form of chemo that would last until the last week of March. She was told she would lose her hair, be sick, lose weight, etc. Her hair only thinned and never completely fell out. She lost some weight, but she was already skinny so it wasn't that noticeable. If you never knew she was sick, you'd never know. This treatment shrunk her tumors in her affected lung 20%. Progress. Hope.
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| Baby Nixon with "Mama", Spring 2011 |
We scheduled my baby shower to take place as soon as chemo was done - 2 weeks before my due date - perfect timing for my mom to feel relatively well after her treatments.
She was tired throughout, had some nausea. I never understood the extent of her side effects because she was one of those people who kept her thoughts and feelings to herself to protect you. Even if you tried to pry out emotions or negative thoughts she refused to share. The week before she died I found a notebook where she documented her side effects every day from the first day of her chemo. The effects were much more dramatic than anything she ever let on to. Constipation, mouth sores, hair loss, nausea, fainting, dizziness, foods tasting bad or different, a constant metal taste in her mouth, shakiness.
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| Cedarburg Strawberry Festival |
After that first bout of strong chemo she was then moved to a maintenance chemo treatment. This treatment would just hold the cancer where it was. She went every other Tuesday for the next year. She gained some weight, her hair came back. Yet again, if you didn't know she was sick you'd never know she was sick.
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| Wayne's Wedding. March 17, 2012 |
She was there for my son to be born. They joy in her face as she watched him come out and then be placed in my arms the first time was something I will never forget. She flew to Arizona for my brother's wedding. Their first dance was so emotional. We were all crying. We all knew her time would come and we wanted to savor the moment forever.
After the trip to Arizona for his wedding she learned she had gotten a blood clot in her leg. Then she went in for a follow-up scan and she learned the cancer in her left lung had come back to where it was back when she was diagnosed. She coughed a lot. One night her and I had gone to the Green Bay Symphony Orchestra and she coughed quite a bit. Of course she looked healthy and the jerk in front of us kept looking back and giving her the stink eye. At intermission I was waiting for her to use the restroom so I could say "Don't worry asshole, you can't catch lung cancer so stop staring at my mom you fucking dick" Little did I know she was trying to get me to go so she could say the same, maybe with less swear words, but lucky for him he got up and moved to some other empty seats. I came home furious, I just called Kyle and vented. I felt terrible for her.
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| Breakfast on the Farm, June 2012 |
In May we learned the cancer had spread to her brain, a common next step for lung cancer. I called my brother and told him I thought he should still come home while she was still doing relatively well. She finished a month of radiation right when Wayne got here. We had the absolute best week of our lives. Hanging out, joking, laughing, doing what we all do best...being spoiled by our mom who loved her kids more than anything in life.
After he left she started another very aggressive form of Chemo. This chemo completely knocked her out. She lost all her hair, she was sicker, slower, called in to work more. I remember telling her, mom, if you want to stop, stop at any time. Don't do this for me, Wayne or Nixon. Stop whenever you're ready. Her response was, well, I'm not ready to give up yet.
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| Gramma and Nixon at her old office |
When my mom lost her hair she lost a lot of her confidence. Think about when you have a bad hair day - it really sets up how you react to everything that day. I had a super embarrassing experience the week I had Nixon - I am so grateful my mommy was there for me that day. It was my 30th birthday. I had a 5 day old baby. She wanted to take me out to a nice dinner to celebrate but on the way we stopped at Target to load up on some things I needed. Nixon screamed his head off the entire time. I retreated to the parking lot to nurse him, a task I still didn't know what the hell I was doing, and I just called Kyle crying that I was going to end up going to the McDonald's drive thru for my birthday. My mom made it out to the car with everything we needed and I got out of the back seat to get into the driver's seat right when a man came along the side of my car. He gave me a strange look and I looked down to see that my shirt was still above my chest and my flabby nasty Just-Had-A-Baby belly was hanging out. I got in the front seat and balled for 15 minutes. My mom rubbed my back, soothed me, told me it was fine, that we don't know him from Jesus. We ended up going to Maggiano for dinner, Nixon slept the entire time, and we got a free dessert sampler.
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| Nixon's 6 Month Pictures. October 2011 |
Well, my mom called me one day and said "OMG, I have an embarrassing story that matches your boob flash at Target" She proceeded to tell me she got out of the car to go get her nails done and a huge gust of wind kicked up and sent her wig tumbling across the parking lot like a tumbleweed. She had to run across the parking lot, bald, humiliated, chasing her wig. You win Mom.
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| A month before she went onto Hospice. August 2012. |
She never showed me her head until one day I came home, I was doing my bi-weekly visit and was running errands for her and she had her scarf off and forgot. It was very shocking at first, but I didn't say anything for fear of embarrassing her. She all of a sudden said, "I'm so sorry, I forgot I took it off" and I replied, "Don't worry. Bald is beautiful. You've earned that and I see it as a badge of courage. It shows everyone you're a fighter. Wear it proudly mama." After that she never covered her head when I was home. I think she took those words to heart. I've never been so proud of her or thought she looked more beautiful. I would kiss her shiny dome multiple times a day just to say to her - I love you, bald head and all.
The chemo wasn't working and we all knew it but no one said anything. It was the elephant in the room. She called me one day to explain she was going to go onto disability from work starting August 20th. This was hard to hear because it was my mom admitting she was sick and that she couldn't work any more. I tried to talk to her about taking the time off to relax, craft, enjoy her garden, enjoy her books. Just breathe. Her company had just built a brand new office and their first day in the office was her last day. She got to work in her brand new office one day. A couple weeks later I stopped into the offices to drop off a wedding gift for a co-worker and they gave me the tour. Walking into the beautiful office that would have been hers was very hard. It was so unfair she didn't get to enjoy that corner office with big beautiful windows.
Speaking of her work, her co-workers were unbelievable. They covered her medical until the day she died. She never had to go on Cobra. They paid for her cell phone until the day she died as well. This was huge since treating cancer isn't cheap - $20,000 a week is about what it costs. They made her a beautiful poem and framed it that explained what she meant to them. They drove out to the house to visit her. Co-workers from their offices in Germany sent cards, letters, gifts. They threw her a "retirement" party. They were the reason why she held on so long and I'm forever grateful for their love, support and patience with her while she fought for her life. Any time a new diagnoses came along they'd send her words of encouragement that she was always awestruck by. She'd always show them to me and be so amazed by "her boys" at the office.
I sent her a cookie bouquet to celebrate her retirement. It was hard to acknowledge why she was leaving work and I was trying to put some lipstick on that Cancer Pig.
A week later she was admitted to the hospital. 4 days after that I drove her home for the last time. She was officially on hospice. Oxygen. A wheelchair. Waiting to die.
When we were leaving the hospital we waited in the lobby for valet to pull up the car and there was a couple waiting for valet as well, getting ready to take home their brand new baby. There my mom sat in her wheelchair, oxygen on, small and frail with her bald head covered in her scarf and I thought to myself, wow, here is life and death all in one small space. One life about to begin and another about to end.
My mom was so frustrated and I just didn't know what to say to her to make it better. On the drive home I looked over and she was drinking in the sunshine. I asked her what she was thinking, she replied she didn't know. She didn't know how to process it all. We stopped at McDonald's Drive through and went home. It was the last time she would ever pass into the house through the front door. Kyle was at her house that day while the hospice company came to set up her hospital bed, oxygen concentrator and all the other things that went along with getting her settled in to wait to die.
My job was also unbelievable. Their words were TIKI torches will always be here. Go home, be with your mom. I was able to spend all my time with her. I made all her meals, helped her to the restroom, helped her shower, made schedules for caretakers, managed medications, entertained her, talked, laughed. I'll never forget those tender moments when she was humiliated that I had to help her do daily tasks and I would just soothe her, rub her back, legs, feet. Do whatever she needed. There were of course incredibly hard times - when she had to use the commode when she could no longer use the regular toilet and I was literally fighting puking as I cleaned it out but I knew I couldn't make a sound for fear of embarrassing her or hurting her feelings. When, for the first time in my life I was over my patience threshold with Nixon and screaming at him, putting him in his playpen just to keep him away from me so I didn't hurt him for just doing what toddlers do. I was ashamed of myself as a mom but I was using all my patience on my mom something had to give. My friends and family would come take Nixon for a couple days and I would ache with missing him.
There was a steady decline, every day. She started getting very confused, very lost. She didn't know what day it was. She slept constantly, rarely ate. She didn't realize she would fall asleep mid-task. It would take over an hour just to get her to the restroom. I'd wake her up and ask if she wanted to use the restroom. She would say yes, and start to move her legs. She'd fall asleep. 10 minutes later I'd rub her back, slowly wake her up, and then she'd move another inch or two and fall asleep again. Repeat. She'd ask "How long do I fall asleep? I don't know why I keep doing that!" and I would just reply, not long mom, it's OK, no worries.
I tried to find the humor in it all - if I didn't I would crack. I'd giggle when I'd be reheating the same plate of waffles for the 5th time of the day because she'd always think it was a new day. Who was I to tell her it wasn't a new day when she'd be robbed of so many sunrises. Sometimes I wonder if she really knew at the end how long she was on hospice. It had to feel like years. It's a shame we shoot horses for less but watch our loved ones struggle, lose their dignity, fight pain and fear.
I was most scared of leaving her because I felt like the second I'd leave she would die. I wanted to be there for her, maybe more so for me than for her. After a month, all the stress was adding up and I finally needed a break - we had a friends wedding in Manitowoc and it was a great release. It was like I was getting this cloud around my head and I was getting too frustrated with everything and just being out for a night with friends was great to clear my head. When I was getting ready to leave I knew it was the last time I'd see her alive. I kissed her probably 20 times. I would pack something, walk by, kiss her again, repeat. She was laughing and told me to stop and I said nope! When I was ready to finally leave I said "By Mama, don't go anywhere without me, Okay?" I wanted to somehow say "Don't die without me". I then went to Milwaukee for two days and on the morning of the second day my phone rang. I saw my aunt's name and I just knew what the call was going to be.
My friend Christina was in my office and she just held my hand while I calmly asked my aunt what happened. My mom had woken up that morning and was struggling to breathe. Vickie fought to get some morphine in her mouth to calm her down. She finally calmed down and then she checked on my mom an hour later and she was dead.
I hung up the phone and my head swirled. My mom was dead. The woman who I needed for everything, who I talked to every day, who was my world, was dead. I'd never again be able to share my highs and lows with her. I was an adult who felt like an orphan.
I left the office in a blur, picked up Nixon and then Kyle drove us to her house. I cried quietly, soft flowing tears the two and a half hours to her house. We opened the front door and Nixon said "Mama???" (his words for Gramma) and he ran into the living room where her hospital bed was. Her bed was empty. It reflected my heart at that time. I grabbed her robe that was draped over her wheelchair and I laid in her bed hugging her robe and those deep, hollow, earth rattling sobs came back. The sobs I hadn't felt since the day she told me she had 3 months to live. I cried so hard I wanted to puke.
The rest of the week I just felt dull. Everyone offers sympathies and kind words and you just want to scream at them "SHUT THE FUCK UP, YOUR WORDS MEAN NOTHING!!!! MY MOM IS FUCKING DEAD!" But of course you reply, thank you so much, that means so much. I meant it, everyone's support meant a ton, but that doesn't bring my mama back. It doesn't let me feel the warmth of her skin again. It doesn't allow me the chance to see the twinkle in her eye. I never felt so alone but yet supported by so many all at once.
Funerals are bull shit. There. I said it. It's cruel and unusual punishment for those who loved the person who passed away. Yeah, ok, I'll stand up here for 2 hours while everyone reminds me how wonderful my mom was. The tears never stopped. It was so exhausting emotionally. Then I'd be taken aback by all of my friends who drove all that way up to extend their support, love and sympathy. Who knew so many people loved my mom, supported me, wanted to share in our grief. It was overwhelming.
Before the service starts the family was to gather at her casket for the last time. I stared at her beautiful face. I tried to take in all the details, drink it all in and lock it away. Her hands, her mouth, her frame. I knew it was the last time I would see her physically. Everyone started to walk away and I wanted to kiss her so bad but I was scared what it would feel like. I knew she wouldn't feel like my mom and I wasn't sure I wanted to feel her cold skin and I was scared that feeling would be forever in my mind, but I also didn't want to walk away without giving her one last kiss. I leaned over and kissed her lips and it was hard, cold and felt like plastic. It was strange, but I needed her to feel my last kiss, my last effort of love for her.
After the ceremony the pall bearers carried her small body out to the hearse and the church bell rang solemnly, every minute. It was beautiful and sad all at once. I was leaning on Kyle's shoulder crying and all of a sudden my aunt's phone rang - her ringer was "Don't Worry, Be Happy". I was a sign from my mom, and it was amazing. I stepped over to my brother and I grabbed him and hugged him and cried so hard. I said to him "She was the best mom. Ever." and he replied "Totally Dude". We just hugged each other and cried for so long. It was so final.
I've been going through a lot of emotions since that day. Sadness, grief, relief, guilt. I wonder if I was there enough for her, if I did enough. Guilt for being grateful to have my own life back after 2 years of driving up every other weekend and the most recent month long battle. A little denial that she's really dead. Sometimes I feel like she's just up in Green Bay. I go to email her and realize she's not there, so I send my emails to Wayne. I'm not sure he cares that Nixon says "Poop" but unfortunately for him I'm telling him now.
2 months before she got very sick she recorded one of those books you record your voice reading. It's that kids book "Guess How Much I Love You". I pulled it out last week Wednesday and read it to Nixon before bed and he was in awe. He kept saying "Mama?" and I sat back and just cried. It was so nice hearing her voice. One of my fears is losing the sound of her voice and this relieves that fear. Nixon demands that we read it every night and every morning. You can't even change his diaper in the morning - we HAVE to read the bunny book. He points and screams and you grab it, sit down, and he giggles and squeeks with joy. It's so sweet but it also breaks my heart at the same time.
I have initiated the last steps of this chapter - finalizing the design of her headstone and writing this blog post. I've cried the entire time I wrote it, and I knew it would be hard, but here it is. On paper. My thoughts, experience, emotions. I'm not sure if this post is for anyone other than myself, but this is how I felt throughout. It's hard but relieving all at once.
I am struggling with her headstone. It's the nail in the coffin for lack of better words. It's so final. It will stand at her grave site for eternity. It's all that will remain of my mom, it's the only thing that strangers will have to learn about the legacy of a woman who was so much to so many. How to you capture all that in such a small space?
Well. There's that. I'm going to post this now without pictures and I'll add them in as I have time. I just want everyone to read her story and to know that she fought the hardest battle of anyone's life with grace and strength. Here's to you Mama. XoXo Cj
My Mom's Obituary: http://www.mcmahonfh.com/fh/obituaries/obituary.cfm?o_id=1659042&fh_id=13643
It doesn't even touch the iceberg of who she was...but I promise to be the reflection of her in everything I do.
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