Mom's fight with SCLC
Wednesday, April 28, 2010
By: Dawn Poole

A daughter and caregiver's perspective

I still remember the day my Mom called me up to talk, and my asking her why she's out of breath. She'd explained she'd just been golfing but wasn't able to do more than 9 of the 18 holes and she couldn't figure out why. I was concerned, and thought maybe she had asthma but figured that since she was going to the doctor already that she was in good hands. I was about to find out just how wrong my belief in that was.
Doctor appointment after doctor appointment, specialist appointment after specialist appointment and we were no further ahead in my Mom's health issues than we were when we first started. The only difference is we'd lost 5 months of time.
I was mad. Mad at all the doctors that I knew were misdiagnosing my Mom's health issues so I did the only thing I knew to do. I turned to the internet. I searched for days to match up all the symptoms my Mom had with all the various different illnesses that the doctors know about, and one day I hit the nail on the head. I called my Mom up and told her to start finding other doctors, ones that will not only listen to her but ones that will pull their heads out of the sand and take the blinders off. She did, but ended up having to be rushed to the hospital. That turned out to be a blessing in disguise.
I'll never forget the day I got the dreaded phone call. I'd just put my 2 year old daughter to bed and had got ready for bed myself. It was still hot (August 1st 2006) and I was in the kitchen making myself a cold drink when the phone rang. It was 10pm. Apart from thinking it was odd to get a call that time of night, I knew I was about to get bad news, so I tried to prepare myself while answering the phone. The call was short, "Your Mom was rushed to the hospital tonight and has been admitted. She's been diagnosed with lung cancer." I collapsed on the floor and started hyperventillating. This couldn't be happening!
I called a friend to get over to my place to take care of my daughter so I could race to the hospital. All thought processes pretty much shut down after that and I was working on pure adrenaline. On my way to the hospital I managed to call my brother, then tear a strip out of him for his nasty comment about Mom. I was so mad at him that I threw the cell phone across the car. Sisters! I had to call my sisters and let them know, so I pulled over just long enough to find where I threw the cell phone and called them to let them know what was going on.
I arrived at the hospital to some pretty funny looks, but when I looked down to see what I was wearing, I realized why. Green tank top, pink and black shorts with blue runners definitely is not a fashion statement, but I just shrugged off the looks and fought back the tears. The nurses I talked to were great, and gave me the option of waking my Mom to let her know that I was there. I opted not to wake her, but asked them to let her know I was there.
Next came the stalling from the doctors. Mom would get an appointment, get ready to go to the appointment and then at the last minute the doctors would cancel it. This happened 3 consecutive times, so I sent an email in to the health authority full of threats and ways that I'd expose them for intentionally killing a patient (was BIG news back then). Since I'd gone through this with my father, threatening the health authority and having them call my bluff, thereby forcing me to contact all the media outlets, the knew I was serious.
I got a call from my Mom the next day, asking me if I'd done something to help speed up the doctor’s appointments. I quickly changed the subject and promised her that my youngest daughter and I would come for a visit. We showed up and she asked me again, to which I casually shrugged my shoulders and asked "Why? Are the doctor's actually keeping their appointments now?" Her response to that made me have to turn away from her so I could smile without letting on to her what I'd done. It worked. In fact, threatening the health authority worked so well that she had doctors calling her up, offering to help her as best they could! Finally! Results!
I became my Mom's primary caregiver. I arranged her appointments, transportation to the appointments, visitors while she was out of town, places to stay, relatives to go to her appointments with her when I wasn't able to - absolutely everything. I did this all on my own while raising a 2 year old by myself and dealing with my 9 yr old daughter's father's games of bringing me into court for silly things (I ended up committing the ultimate sin in court by breaking down into tears and explaining to the judge that I just didn't have the energy for his games because my Mom was fighting for her life and needed my undivided attention. Thankfully the judge was understanding and reamed my ex out). During my Mom's entire battle I had numerous family members calling me up wanting to know how my Mom was doing, if she needed anything (I could kiss those that offered to help!), deflecting money-hungry relatives that wanted to know if my Mom had died yet and if they were in her will, an erupted family brawl over where my Mom wished to be buried.
I was visiting my Mom one day when her neighbor stopped by for a visit. She pulled me aside and asked me if she could help. At first I told her that I was fine, but when she hugged me and told me that she was there for me as well it finished me. Before I realized what I was doing, I was crying on her shoulder and telling her everything that I was trying to deal with on my own. She asked me if I'd mind if she helped out, and offered as much as she could. I gratefully accepted, and we went inside to talk to my Mom and let her know.
I was left coping with the family and appointments, while my Mom's neighbor helped take care of my Mom and her house. I finally was able to have some time for myself to have a relaxing bath once a week, which I really looked forward to.
When my Mom's doctor finally ended up taking her drivers license away, I knew things would get more interesting. My Mom was always a strong woman and hated relying on anyone for any help. She'd already decided that she was going to take a trip out of town for the day to visit one of her step-daughters. She told me she had one friend that was going to drive her, so I phoned to confirm it with that friend just to make sure. The last minute she phoned that friend and said another friend had offered to take her. She phoned the other friend and explained that she wasn't feeling good and didn't think a trip out of town would be a good thing on that day, and promised that she'd stay home. I had taken this opportunity for myself to make an appointment that I needed to do, so I was out of town as well but had my cell phone on and with me. I got 3 different phone calls from 3 different people all tattling on my Mom! She'd decided that she was going to drive herself.
I got off the phone with her 2 friends and my half sister and called my Mom on her cell phone to see what was up. She told me what she was doing, so I gave her the third degree about how she was feeling etc. I made her promise me that if she started having trouble to pull over and call someone to pick her up, and to not endanger anyone else's lives in the process. She agreed, and in her defense the doctor only suggested she not drive the day before but was in the process of filing the medical documents necessary to have her license suspended. She did good though, and was proud of herself for being able to do a drive like that on her own. I heard the pride in her voice when I'd talked to her. She felt independent again after being dependent on so many people for so long! I called everyone else back and told them what Mom and I had talked about in regards to her driving, then thanked them for tattling on her! My Mom never did let them live that down.
During one visit to a cancer clinic, my Mom ended up getting double her medication dosage. That sent her loopy, big time! She called me up repeatedly, asking me what I was doing, who I was, where I was and then told me she was going to die that night. I did everything I could to reassure her that she wasn't going to die that night, and that she's going to kick the sclc in its butt. After I got off the phone with her, I called the nurses in the cancer clinic to find out what happened. They didn't understand why she was reacting the way she was, until they realized that she'd already had her daily doses of her meds before she got there, and they gave them to her again. I had them stop any visitors for my Mom and explain what happened and that she wasn't herself right then. I still got phone calls from family and her friends letting me know what happened.
I went through all this for approximately a year. That year I have very little sleep and got to the point where I was terrified of the phone when it rang, expecting it to be bad news.
Eventually I did get another bad news phone call. On March 12, 2007 my brother had arranged (ok I called his boss and arranged the time off for him since he was afraid to let his employer know what was going on) to have the day off to spend with Mom. I got a phone call from my brother at 2pm saying that the doctor had just left (I knew the doctor was coming, another reason I wanted my brother there) and that they didn't think Mom was going to make it through the night.
I called everyone in the family, from the USA, to within Canada, all the way to Australia and everywhere in between to let them know. I packed up some things for my daughter and got in the car. On my way, I called my oldest daughter's father to see if he could arrange to bring her over for a visit after school. Thankfully, he was actually willing to without a big fight.
That afternoon family started showing up. As is the normal in my family, when more show up the tension rises. I tried to deflect as much off my Mom as I possibly could, and eventually had everyone sit down so I could talk to them while my Mom had a short nap. I'd decided that since we all wanted to be there for her and that none of us wanted her to be overwhelmed, that we were going to do shifts. That worked, at least temporarily until everyone there decided to turn on me.
At 4 pm my Mom announced to my brother that she needed his help to go to the washroom. She gave me a wink to let me know she was about to do something to my brother. I had no clue what, but knew this would be interesting though. My brother can be a bit of a prude, so I was expecting my brother to come out very embarrassed. He helped her go to the washroom, and then helped her go to bed. She'd decided she was tired and that she was going to go to bed for the night.
This started the bedside vigil with her. My Mom got to the point that I was the only one she knew by voice and looking at me, which left me with the task of letting her know who was there in the room.
One of my Mom's best friends came to see her. She tip toed into the room so as not to wake my Mom. She was devastated and in tears. She asked me if she could swap places with me to sit closer to my Mom. I had no problems with that. I woke my Mom gently, and told her who was here. She tried to sit up to talk to her, but couldn't. I'd pointed and told Mom where her friend was sitting. She saw that she was crying, and with my help lifting her arm she wiped away her friend’s tears and told her that she loved her. This got her friend bawling, and brought about my Mom's last words ever spoken. She looked at her friend and in her best whisper she said, "Blubberpuss". It was after this my Mom slipped into her coma.
Once the family realized my Mom was in her coma, they all ganged up and kicked me out of my Mom's house. They used the excuse that my daughter was being too loud. She was asleep in another room at the time. I was bullied out of my Mom's house, and they attempted to take away my last chance to say goodbye to my Mom. I'll never forgive them for trying to do that.
With my tail between my legs and my daughter sound asleep in my car, I went home and howled in emotional agony to one of my closest friends. After 2 hours on the phone with my friend, getting pumped up and told that I deserved to be with my Mom, I finally loaded my daughter back in my car and went to my Mom's. I fully expected a fight, and I got it. I started taking charge again. I made phone calls to family to give them a little warning that someone would be calling them again to let them know Mom had passed, and I had made another schedule for people that could go in and see Mom while she was in her coma. My Mom's other best friend couldn't bear to be in the room with my Mom, and offered to take care of my daughter for me. I was extremely thankful for that, and a couple times that I came out of my Mom's room I saw her cuddling with my sleeping daughter and crying.
My aunt, during the night, decided that then was the time to help fulfill one of my Mom's last wishes. She, my Mom's neighbor, and her best friend started prepping Mom so that when she died she didn't make a "mess" in her bed. I stayed up by my Mom's head and held her hand, telling her what they were doing. At one point, they moved my Mom a little too much and caused her some pain because she opened her eyes. I asked her if she was hurting, but all she could do was nod. The look in her eyes spooked me, and still does. Her eyes were all black, no color at all.
After the final preps were done for my Mom, I sat and comforted my great aunt. She was beside herself with grief, chanting that it wasn't fair and wanting God to take her instead (she was 87 at the time).
The final breath.
With Mom's hands going blue and her breathing barely tiny puffs, we knew she was going to pass very soon. We cleared the room and only had myself, my brother, my aunt, my great aunt and one of my Mom's best she wouldn't suffer any longer from her cancer.

Puff, pregnant pause, puff, extended pregnant pause. We thought she was gone. Puff. We waited to see if she'd breathe again. Death rattle and extended exhale. She was gone.
She lost her battle to small cell lung cancer on March 13, 2007 at 11:57am after a 10 month long courageous battle. We miss her every day, and keep her close to our hearts.