The sleeping communist cancer cells in the cervical tumor woke up earlier this year and spread to my lungs also. We discovered it when I couldn’t go to the bathroom “normally” for me. It was, in short, a mess. I have been using intermittent catheters ever since, because the communist tumor has wrapped itself around my bladder. However comma I was shortly put back into chemo therapy using the same cocktail as first time around as it had been 14 months since my last treatment back in February of 2013. Treatment commenced in April of this year.
The aforementioned cancer cell killing cocktail consisted of Paclitaxel + Carboplatin. Higher doses than last time (going for the hard punch in the nose). Unfortunately, during the second treatment in June, I exhibited pretty serious reaction to the carboplatin. According to my husband person, my entire head suddenly turned the color of a “rock lobster” and hives broke out on my arms. Good grief. Well, that was gotten under control and I went home as normal.
The third treatment in July consisted of the usual anti-nausea bag, anti-allergic bag (which puts me to sleep) and the Paclitaxel. A cat-scan was done a couple of days prior to my fourth treatment earlier this month.
Unfortunately, the level of kill was not as hoped. While the goobers on my lungs shrunk pretty darned well, the cervical tumor only had a small kill rate. I am sure that wasn’t a total surprise to the Oncologist, but it wasn’t music to my ears. That said, I should have suspected as I was still needing to cath 3 times a day, sometimes 4.
The Onc talked with us for a time and received a phone call during our visit. He had mentioned some “older drugs” he might like to try to knock this down again. Among the potential side-effects was dementia-like effect on my brain which could be permanent. Ewww. Then again, without treatment I will die sooner than later. Now after the Onc left the room to take that call, I asked my husband person, “why hasn’t he mentioned radiation?”
So when the Doc came back in I asked him, “what about radiation?” Well his face lit up and we discussed the issue and an appointment was set for this Wednesday (July 16th) with a radiologist with whom this Onc works frequently. We are leaving this appointment and outcome in the Lord’s hands.
Either way, I will be taking a ‘oral chemo’ pill and the Doc is thinking that will take care of the goobers on my lungs. Yea.
I have learned two very valuable lessons during this time. First, I am not only ‘suck in my ways,’ I don’t know how to ‘go with the flow’ and alter my thinking very well. Not a total surprise as I had no children (who are, according to parents I talk with are fabulous “go with the flow” teachers). So I need to be willing to alter my thinking as a matter of course.
The second lesson I learned was more profound for yours truly. During our meeting with the Onc, I made the following statement, ‘without the chemo therapy, even if taking the oral (not expected to really affect the main tumor), this is going to grow like crazy again and I could die next week.’ Ok, a little drastic (ok, a lot), but that was my thinking at the moment.
The Doc’s reply astonished me for a time. His said, “right now there is nothing life threatening. None of your organs are in danger at this time.” WOW !
After munging on this for some time, I came to the following realization — I have a chronic condition. Now you may be thinking, yea, so what? The so what for me is that there are hundreds of thousands of people living with chronic conditions. Many of those conditions can very well lead to early death.
The word “cancer” is just a word to describe the type of chronic condition I have and need to live with. And what has that done for me? It has rid me of the deep-seeded fear I have of the word/condition “cancer.” I am now more in control as I can approach things with objectively, having been released from the “fear” of cancer. I am better equipped to “go with the flow.”
I Are Here
And Every Day is a Holiday!!
Please see “Guest Post by J.O.B. – Caregiver Part I” if you need to catch up or need the link to J.O.B.’s blog.
March 1st, 1993
I came home from school one day in late February. As I walked through the Dining Room, I saw my Father. My Mother was standing next to him, along with Debbie. I was a little befuddled. I asked, “What’s going on?” It seemed like my Father was going to answer when my Mother stepped in front of him. She grabbed me by the face and said, “Honey, I’m not feeling too good. My friends at work are going to help me”.
I thought this was great. Mom worked at the hospital and her friends would know more than I would about helping her. She stood in the Living room holding my face telling me that everything was going to be fine. She even told me to do my homework, which I did. As the next couple of days came, the routine differed. Instead of relieving Debbie at the house, I joined her at 2C. That is the Palos Cancer floor which Mom worked. We would sit there, shooting the bull about whatever. But what I noticed most of all were all the IV’s hooked up to Ma. I would later discover that these IV’s were pumping morphine into her.
Mom was like a living corpse. I would get there, sit next to her, and rub her hand. I would rub her head. I would joke with Debbie, I would joke with Ma. But she would just stare into space. She would stare at me and Debbie. Her Mouth was gaping open, and I can’t even imagine the pain she was in. After being at the hospital for an hour or so, I told Ma, “I have to go home real quick and do some homework”. Ma just looked at me. she didn’t even have the strength to speak. I told her I would be back in a couple of hours.
I got home and studied. After studying I jumped in the shower. I took a long relaxing shower. So hot that my skin turned red. As I was in the shower, I heard a banging at the door. I jumped out of the shower and got dressed in the matter of a minute or two. It was my Brother-in-law Jeff. As I ran downstairs and saw him, I knew the emergency. “MOM’S DEAD!”, he said. We hugged and I told him to go back to the hospital to be with Debbie. When I arrived in Mom’s room………………. She was still warm. My eyes watered, my pulse raced. And I felt like the biggest piece of shit. To this day, I should have been there when she passed. I should have been holding her head in my hands. I should have been there with her. In the room, she was warm, and there was nothing I could do.
She was gone! She was a beautiful Irish/Scottish women who was diagnosed with cancer. She lost the battle and she lost it badly. But she gave it everything she had. She may have went down, but she went down fighting. Because that’s what she taught us. Do the best you can! You may get your ass kicked! But if you try hard, you never lose!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Dana Jane O’Brien
Please see “Guest Post by J.O.B. – Caregiver Part I” if you need to catch up or need the link to J.O.B.’s blog.
When February rolled around, the dark days had arrived. Mom wasn’t smoking anymore, only because she could not muster the strength to walk to the basement. Most of her time was spent laying on the couch with a bucket placed next to her for vomit. I would come home from school on some days and empty the bucket. I would place and dab a cool wash cloth on her head. A head that had prickly little hairs on it that just looked like death. This must be the definition of caregiver that we all discuss.
This became the new normal. Debbie would stay with Ma in the morning while I was at school. And I would relieve her at 3:20. There were days where Mom could function. She would be able to get off of the couch and use the bathroom. Even make a meal, and manage to keep it down. But there were days that were filled with nothing more than pain and tears. I remember on two separate occasions that after being fed dinner on the couch, she was to weak to even turn onto her side to vomit, so she threw up all over her chest and shoulder. After cleaning her up I would lift her torso up to remove the sheet and replace it. As I gently laid her head on the fresh pillow, she would look up at me with the saddest look. It had to have been the look of utter shame. A Mother who brought a child into this world, and was supposed to grow old watching and experiencing all of his accomplishments. But currently, she lay there helpless with her baby boy having a front row seat. Cleaning vomit off of her. Feeding her. Bathing her. I’m guessing this could not have been what she imagined the end to be.
Come mid February things went from bad to worse. Ma would go days without eating. Not because she didn’t want to but because she didn’t have the strength. The good days were pretty much gone and Debbie was reprimanded for using all her sick days at work. Which resulted in my Father speaking to my Dean and counselor which enabled me to take days off of school. When Bill was able to get off of work he would come over. Probably just to give me a break.
I remember one day particular that I was kneeling next to her rubbing her head with a damp cloth. All of the sudden a tap on my shoulder startled me. It was Bill (Brother). He asked, “How is she doing?” I asked him, “Are you kidding? Look at her! She’s dying. And there’s nothing we can do”. “Why don’t you go out tonight? I took off of work tonight and I’ll stay with Ma. You should just go out and relax a bit”, he said. I told him I was just going to go to my room, which I did. An hour later I had a knock on my door. It was Bill, and he wanted to know what was going on. I told him, “Nothing, I just didn’t feel like going out”. He told me, “Look, I know Mom is going to pass and it is unfair to you. But you need to know that she would want you to live your life. And I want you to live your life. We are all in this together”, he said. “I’m your Brother, and I will be here for you……..no matter what!”, he told me. “We are in this together and that is how it is”, he said.
Bill’s help was huge, but as each day went by things got worse. It got to the point where the O’Brien Matriarch would spend ALL of her time laying on the couch. Moaning in pain with tears coming from her eyes. This woman who stood seventy inches tall and once weighed one hundred and seventy pounds had been reduced to a shell of herself weighing no more than one ten. Every day that I was there was filled with pain, and despair. I contacted my friend Sean. He was a chemistry genius who was able to extract THC from the marijuana plant and bake it into food. He made cookies and brownies. I purchased quite a few brownies from him and was able to talk my Mother into eating them.
The amazing thing is that I feel no guilt over this. I felt NOTHING but guilt with the cigarettes. Even to this day I don’t like discussing it. But with the “THC” brownies, I have no problem. I think it’s because it worked, somewhat. She wasn’t in pain so much any more. She could eat without throwing up. But most importantly, she seemed to be able to enjoy the little bit of life that she had left.
Ma had two favorite categories of music. One was classical, which I grew up learning from her on the piano. But as much as she loved classical, and the piano, she loved Motown, and her favorite was Otis. I remember purchasing “The Very Best Of Otis Redding” cassette so that we could listen to it. Her favorite song was…………………….
Please see “Guest Post by J.O.B. – Caregiver Part I” if you need to catch up or need the link to J.O.B.’s blog.
Christmas was awesome. Mom felt like a Wife, a Mother, a Grandmother, and a Sister for the first time in a while. She provided holiday spirits and holiday cheer for her family. It was the most joyous time in the history of the O’Brien/Robertson family. At least what I could remember. After all, as I said, we were all together for the first time. And no matter what pain, discomfort, or fear that my Mother felt. All I can remember is the smile that was constantly upon her face.
But as New Years came, things went back to what became the new normal. Football was over and I was lifting at the gym. Dad and Bill were working their asses off. Julie was back at school. And Debbie was taking Mom to radiation therapy. Our family sort of fell into a routine. But it was about to get a lot more complicated.
I remember coming home one night in early January. It was the first week in school after Christmas break. Mom was in the Living room on her favorite chair. I sat down beside her when she hit we with it. “Could you do me a favor Honey?”, she asked. “Of course Ma, what is it?”, I replied. “Can you get me a pack of Virginia Slim Menthol Lights?”….I told her I couldn’t for obvious reasons, and that’s when I had the worst conversation of my entire life.
“Honey, I just want a cigarette”, she said. “You probably do Ma, but that’s what got us to this point to begin with. And we are still fighting”, I replied. My Mother grabbed my hand and sat me down. “Jon, radiation is over. My last treatment was over a week ago. Unfortunately it did not work, and the cancer has spread to my brain.” she said. “What does that mean?”, I asked. “Honey, we tried hard, but it didn’t work. The Cancer spread. I am so sorry to tell you this, but I am going to die. It’s just a matter of when, but in the time being I just want to live my life the way I want. But I need your help because I can’t drive.”
I couldn’t believe this shit. How could this be so final? How could this happen out of nowhere? I ripped away from her and for the first time since the diagnosis I started openly sobbing. She came up behind me, put her hands on my shoulders, and said, “Honey, I am so sorry, but I don’t want to lie to you.” “But how do you know Ma?”, I replied. “Hon, I was a nurse on the Cancer floor for thirty years. I knew the minute I received the diagnosis. I fought the best I could, but I was too far gone. And now, I just want to enjoy my days.”, she said.
As I ran upstairs to my room I could hear Ma start to whimper. I remember thinking about everything, and going to my bathroom so that I could vomit. I sat in my bed for an hour or so thinking. And then I came to a decision that I regret to this very day. I left the house, and went to the gas station. I purchased a pack of Virginia Slim Menthol Lights. When I got home, I handed them to my Mom. She went into the basement, and I went to my room. This action would come to cause a twenty year gap in the relationship with my Father. But in the end, I was concerned about one thing. Helping my Mother live out her last days in comfort.
Christmas was coming. My Uncle Chuck and Aunt Cindy (Mom’s Brother & Sister-in-law) were coming for the holidays. Mom still had her days. Sometimes she was perfectly fine. Goofing around. No fever. No nausea. Other days were bad. Consistent vomiting followed by tears. Sometimes she just laid on the couch moaning in pain. That was most days. At the time, I had no idea what radiology took out of a person. No one did. There was no computer. There was no Web MD. It was a guessing game. And my Mother and I lost most of those games
But Christmas was coming and that was all that mattered to Mom. She was definitely a Winter person. She loved the cold. She loved the snow even more. I remember having to do my homework in the Dining room so that she could look out the window. As a Family, we were all preparing. I remember my Mother saying, “We have to find someone to make the desserts, because Dinner is mine”. I remember decorating the house with her. I remember shopping for all the baked goods with her. I distinctly remember driving her which pissed her off something fierce. During the second week of December, the good state of Illinois decided to revoke my Mother’s driving privileges. Her anger quickly shifted to helplessness. A very independent woman who was no longer allowed to drive. It had something to do with the amount of radiation she was receiving, and driving seemed to be her last bastion of independence.
As Christmas drew near, she was a defeated shell of her former self. However she was determined to make this the best Christmas ever. And she succeeded. No matter what was going on with her and her life, she was not about to let cancer take this holiday from her. Three days before Christmas, my Aunt, Uncle, and cousins arrived.
Our house was full, and I remember numerous smiles on Mom’s face. Since I was on Winter break I was designated to help Mom with just about all preparations. After taking Mom shopping the day before Christmas Eve, we sat up that night playing cards. Out of nowhere she began to weep. I asked her, “What’s wrong?”. To which she replied, “Honey, I am so sorry, but with everything going on, I forgot to ask you what you wanted for Christmas”. After some quick thought, I told her, “Dad asked me and I think he’s taking care of it”. Of course this wasn’t true. After all, Dad had been working sixteen hours a day so that he could pay for the medical bills, but Mom didn’t need to know that.
We played cards for a while longer, and then she decided to go to bed. At this point of her life, I was helping her to bed which I could tell, killed her. After Mom was in bed I went upstairs and just laid in my bed. I couldn’t make too much noise because my cousin’s were sleeping in the room next to me. I laid there for a couple of hours waiting for my Father to come home. I remember just laying in silence waiting to hear his truck. I heard his truck come up the driveway around 2:00. I gently made my way down the stairs. I was careful to not wake my Aunt and Uncle who were in the guest room directly under the stairs. I hurried to the back porch to meet him. As he walked up he saw me, “What’s wrong!”, he asked. “SHHHHHHH”, I said. “Is Mom okay?”, he asked. “She’s fine”, I said.
“You have to get me a present this year”, I said. “Of Course we’ll get you a gift Jonathon, you don’t need to worry about that”, he replied. “You have to get it Dad. Ma is too worried about having everything ready for Christmas. She felt bad that she couldn’t buy me a gift”, I said. “I’ll take care of it Buddy. You just get to bed”, he replied.
Come Christmas Day, Mom was in high spirits. She was preparing the whole meal. She refused to let anyone prepare this Diner other than her. She did however let Aunt Cindy make the red velvet cake and pecan pie, which she did wonderfully. To be honest, as sick as Mom was, this was the best holiday ever. So much family filled our small Cape Cod, it was unreal. And I especially remember Ma being in the highest of spirits. It is a Christmas that will forever be in my memory. It was the only Christmas in my life that all living O’Brien’s and all living Robertson’s were together in one house.
Uncle Chuck, Aunt Cindy, Brad, and Todd left for home (Kentucky) on New Years Eve. I remember playing Monopoly with Mom that night while Dad and Bill worked. Mom was in high spirits that night, but she was still throwing up. And quite violently I might add. But other than that, she didn’t seem to be in much pain or discomfort. We talked about the new year. Mostly, she talked. After all, her baby was going to be turning seventeen and she was super excited. I could not have ever imagined how dark the year would start out………………………
As Thanksgiving had come, there were good days, and there were bed. I distinctly remember Thanksgiving being bad for the simple fact that this was the first Thanksgiving that my Mother did not prepare the whole meal. Debbie (Oldest sibling) was cooking. Every other minute however Mom was in there making sure the sweet potato mash and collard greens were being prepared properly. Then the sweet cornbread and black eyed peas (MOM was from Kentucky, duh. LOL). Not to mention the turkey! Holy cow, Debbie had no idea what she got herself into. LOLOLOL
I remember Julie (Second eldest sibling) Stirring a spoon in a big metal Pot. It was the cornbread, and Mom looked at her from the Dining Room and yelled, “Damnit Jules, don’t stir too fast). Of course Julie yelled back, “I’m Not !” I remember my Mother limping into the kitchen right as Bill (My Father) and Jr. (Bill Jr. is my older brother) walked into the backdoor. My Father gave my Mother a kiss and asked how she was feeling? (Just so everyone can follow along easier, I am the baby boy of four children. I have one brother and two sisters.) “Like s##t, how do you think? Our daughters are not preparing Dinner properly?
Well, Debbie & Julie did a good job with Dinner. In the end I think Mom was quite proud because all she could muster was a teary eyed smile. But for me, it was incredible. It was Mom, Dad, Bill, Julie, Scott (Julie’s boyfriend), Debbie, and Jeff (Debbie’s husband. My brother-in-law), Ginger & Michael (My niece and nephew), and of course yours truly. I could not remember a time like this in my entire life. The entire family was here which was highly unusual (Due to age difference. Debbie, the oldest, is 23 years older than me. Big gap between all of us).
An hour later we ended up having homemade Pumpkin Pie and Red Velvet cake. Mom made those because she refused to let ANYONE else bake in her kitchen! And God D##N was is delicious. I marveled at the whole thing. I remember being in awe. Not because of my Sister’s wonderful cooking. And not because of my Mom’s delicious desserts. But because we were together. All of us for the first Thanksgiving that I could remember. It wasn’t about illness on this day. It was about family! Family that would prevail!
After everyone had left, it was my Mother, my Father, and myself. After my Father went to bed my Mother took her wig off. “Hi/Low or Hi”, I asked. (That’s Omaha Hi/Low) “How about a game of Trouble?”, She replied. I said, “You bet your sweet a## Whatever game you feel like losing at……” I was laughing out loud when my Mother smacked me on the top of the head. As it turns out, Cancer may take a lot of things from you. But it NEVER takes away your sassiness. It was at this time that we had our first “deep” conversation since the diagnosis. As we played she asked me, “How are you doing Honey?”. “Okay I guess”, I said. “You seem like you have something on your mind”, she said. “I kind of do”, I replied. “Well what is it sweety, you can tell me anything”, she said. “Well, I just don’t understand how all of this happened so fast. You went to the doctor a few days after your birthday, then a few days after that Debbie is taking you to radiology appointments. Then last week your hair starts to fall out. I just don’t understand how this happened so fast.”
As I reached across the table to pop the bubble my Mom Grabbed my hand. “Honey, I’m sorry, but I lied to you. I went to see Dr. Rocke three weeks before my birthday. That’s when I found out about the cancer. The day that you thought I went to the doctor was actually my first radiation treatment.”, she said. “Why did you lie about it though”, I asked. “Honey, I’m sorry for that, but I didn’t want you to worry. You need to concentrate on your classes. Not to mention how good you were doing at football. The last thing you need right now is to worry about me. The reason my hair fell out was because I am undergoing such a high treatment of radiology.”, She replied. “Just don’t lie to me because that scares me more than anything”, I said. “I won’t lie anymore Honey. I’m Sorry”, she replied.
We spent the rest of the night playing Trouble and Rummy. I remember going to bed that night more at ease. My question had been answered and I understood her reasoning. I could now rest easy ???????????????
I met J.O.B. over at BlogSpot. He comments here and has agreed to share his experience with his Mom. I know you will appreciate this caretaker view. You can read J.O.B’s blog here.
It was the first week of November that she had an appointment with the Doctor. She had been complaining about a sore throat for seven weeks. Not too mention the occasional fever. She called in and set up an appointment just after her birthday. On October 31st, this woman turned 55 years of age. She was quite beautiful if I do say so myself. My Oldest Sister (Eldest Sibling) took her to her appointment. Since I was Sixteen, I was obviously at school. I arrived home just after 6:00 due to football practice. I was greeted by quite the entourage as I walked through the back door. It was a sight that I was not quite used to. Not only was my Father there, But so was my Brother along with my eldest Sister and Brother-in-Law. My parents told me that they had to speak with me.
“Honey, my appointment didn’t go well.”, my Mom said. I was very confused and proceeded to ask “What’s wrong?” My Mother looked right at me and said, “Well sweety, I do not have a sore throat. It turns out I have a lump in my throat”. “What do you mean LUMP?” I asked. “Honey, I went for some tests a few weeks ago. Today after a few more tests, it was confirmed that I have Esophageal Cancer.”
If you have never heard that phrase, or something similar before, it takes all the life out of you. When my Mother said that, it was as if all the life inside of me instantly drained. My entire body felt limp. And as my eyes started tearing up, my Father grabbed my arm and pulled me aside. “Listen, you need to be strong! I know this isn’t fair for you at your age. But Your Mother Needs you to be strong. She will do just fine, but you need to stay positive so that she doesn’t worry about you.” I informed my Father that I was fine, and was ready to do whatever it would take. “I know you are Jonathon, you are my big boy and everything will work out just fine.” he explained.
As we sat in the Living Room, I heard words I had never heard before. Such as “Radiation” and “Terminal”. There were a few tears, but we as a typical “O’Brien” clan were not ready to give up without a fight. We were going to kick Cancer’s Ass. And who better to do it than a Nurse in the local Hospital’s “Cancer” Floor.
My Brother and Father worked overtime with the trucking company because of the Insurance premiums and Deductibles. This left me as the only male member of our family that was at home. Going into State tourneys for Football, our team was doing well. I came home after practice on a Tuesday. Mom was hovering over the Bathroom sink as she vomited. As I pulled her hair back she asked me, “How is the team doing this year? How are you doing this year?” I proceeded to inform her that we were in the quarter finals. And just as I was about to tell her that I had been elected to “All Conference”, she started to violently vomit. As I held her hair, I noticed it came off in my hands. Eventually, she looked up at me with tears in her eyes.
Even at the age of Sixteen, I could see the fear. And no matter what was going on in my life, or in school. I was not about to let this Matriarch go this alone. After vomiting, she looked up at me that night and apologized. As she apologized she held clumps of hair in her hands. I removed the clumps from her grasp and proceeded to tell her that we would not be beat. After I got Mom to settle down, I shaved her head. I will never forget the helplessness she must have felt. I remember hearing whimpering from her as I took away the last bastion of Femininity. I’ll never forget looking at her, with tears in her eyes. She was so sick. She was so Helpless. At that very moment, I realized what it meant to be a Man that was there to comfort.. I helped my Mom shave MY head. And to this day, I refuse to let my hair grow………………………………………………….