The ERA

I remember when I was young, there was talk about the ERA (Equal Rights Amendment). Looking at the timeline, I think that it was around December 1982, when the US Supreme Court stayed the lower court’s decision, thus signaling to the legislatures of still-unratified states that they may continue consideration of ERA during their spring 1982 legislative sessions.

I believe it was then, because my teacher at the time was Mrs. Pooler, and she talked to us about the decision and why it was important. I remember that she was passionate about it. She explained very clearly to my 1st grade self and my mixed 1st & 2nd grade class what this amendment to our Constitution was about.

To my 1st grade ears, it was kind of mind blowing. Girls, like me, who had grown into women were not being paid the same as men? How fair was that when they were as smart as men, worked as hard as men, but were not being paid the same as men. I think that we might have had a rather lengthly discussion in class that day, but I can’t be sure where what she told us began and where my learned knowledge begins.

Sometime later, my mom and I were probably in the car driving somewhere, I heard the news and was reminded about the discussion. I must have told my mom about the discussion. What I told her, I did not know. I just remember that her response was unsatisfying and left me very confused.

She was against the ERA, part of her argument had to so with ‘if women were paid the same’ it would somehow hurt the men that held jobs and had families. I remember being so confused and clearly thinking that my mom was wrong.

At that point, my mom had separated and divorced my father. We lived with my Grandma, she was also divorced and she and my mom both worked in a factory. Money was tight for us, and I knew, because of the discussion I had had in school, that this amendment would help both my mom and grandma out. It would make a difference in their lives if they were paid more. As a first grader, I did not have the words or the wisdom to explain this to my mother.

In the last fight I had with my mother, she was crying and I was angry. She cried and said that she thought that I thought she was stupid. I do not know where this came from exactly. I know that my mom didn’t have a lot of respect for her own mother. My mother found her mother weak; because my grandma did not discipline anything. I think that she also didn’t think that her own mother was very smart.

My mother seemed to also have issues with people that she knew went to college. She never really felt comfortable with my mother in law. My mother never felt that she was a good book learner. She wasn’t, she rarely read for enjoyment or entertainment. Unfortunately, reading is revered as an important pathway in education and in relation to your ability to succeeded in education or anything in life.

Recently, we went and met two long lost cousins that were brothers. Brother 1 was college educated, brother 2 worked in a factory. She preferred brother 2. Even going so far to express a discomfort with Brother 1 that received more education. She saw the less Brother 2 as an underdog because of what he shared with us.

He told us that when the brothers were children, the father always had him outside fixing things and working. His brother would stay inside and read. His father, is seems had made a decision about the boys. It was one that Brother 2 did not complain about. He admires his brother and does in fact think that his brother is smarter.

We were all wrong; the educators, the government, and everyone that bought into how reading is such an important indicator in success, ability and intelligence. So, I can read a book and write a story and be good at it. You know what, I don’t understand how an engine works. I have no clue. So, now how does reading help me? Sure I can read about an engine, but for me, the words could be in Chinese, because I still would not understand how to fix an engine.

We are seeing this reflected now in our society. Good trades people are hard to find. For 30 some years now, our children have been pushed to go to college instead of going into trades. Now we know that not everyone needs to do their education on a college, that there are other talents then just reading a book.

My mom was brilliant in other ways. She knew how to sew. My mom worked for a seamstress for a few years after high school. She was a good seamstress, so good that the woman that owned the business wanted her to succeed her. My mother did not envision that for herself. So, she did not stay working for her. I think my mother then worked in an insurance office for awhile as well. My mom sewed things on and off in her life and always had a sewing machine. When I was little she made a lot of my clothes. When I was a teenager, she made me the dress I wore to my first formal dance. When my first son was baptized, she made him a baptism gown that all my children used. I know that she was intending to make a quilt, the project is still down in her sewing room along with some other things that I spied.

My mother was also a good gardener. She could grow almost anything. I do not remember her killing really anything that she tried to grow. She was also very creative and crafty. She had a very artistic side.

After our big argument, I tried hard to honor my mom’s feelings. My mom and I did not agree anymore about politics. I think that in her own way, she still needed me to need her. I made it a point to ask her opinion on things that I knew that she would feel comfortable advising me about. She needed me to do that for her and I needed to do it for her and for bigger reasons.

My only regret for my mother, is that she would have tried to show her own mother the same type of respect. It is hard for me to respect my own mother when she had problems respecting her mother. The lack of respect has unfortunately seemed to filter down though to me and my sister. I am now working hard to not make the same mistakes with my own children. I do not want to repeat this generational cycle that seems to have started. I do not want my children to think that I am ‘dumb’. Like my mother and my grandmother; I have talents, passions, and intelligence.

This has also made me take a step back and look at this in relation to my own children. They all have their own talents and passions. Success does not mean going to college to find a good job and to be happy. Success comes in different forms than we have been packaging in.

Don’t Tell me You’re Sorry

My mom passed away from her colon cancer. It has not even been a week.  She fought with it for 13 months.

When she was first dx we were sworn to secrecy. I was not to post it anywhere and not tell people that they knew.  My mom specifically did not want anyone to know because she did not want pity, she did not want people to tell her that they were ‘sorry’. In her view, they had nothing to be sorry for. I understood what she was saying at the time.

She kept up this secret until the end of her life. Three weeks before she died, her best friend from high school called her and asked her if she had colon cancer. She had heard it from someone. My mom denied that she had it and told her that she was ok.

After reflection, I think that I do understand why people say they are sorry, and I do not agree with my mother’s assessment. I do not believe that people feel pity. I think that most people do understand that they are apologizing for something deeper that she did not realize. In fact, I told her that I was sorry too.  I cried a little while I was telling her and I also apologized for saying it, because I could see from the expression on her face that my apology upset her.

So, I tried to rush and explain what I meant. I told her that I was sorry that this happened to her. My mom had watched her father suffer and eventually die from cancer. This was something that I knew she did not want for herself.  I told her that was sorry because we will not have the chance to make the memories that we had hoped to. I told her that I was sorry because this was not the future that none of us had envisioned.

My mom was young, she lead a pretty healthy life, she did not smoke and she was active. So, to her, she was in the clear. Her father was a smoker and we all heavily attributed his cancer to his tobacco use. Now we know that it was a contributor to his death and that there is likely more to learn with genetic testing.

Mom, I am sorry. I am so sorry that it hurts my heart and brings tears to my eyes. I am so sorry that I have to live the rest of my life without you. I am sorry for so many reasons, I can’t even list them all.  I am sorry that I have to figure out how to live the rest of my life without you. It seems so clichè when friends say hug your loves ones while you can, it is never enough.

I am sorry that you didn’t understand the reason why people told you that they were sorry. They were not sorry because they had done something. They were sorry because of what you would have to endure to try to beat that ugly cancer and that they would be even more sorry when you lost your battle with it. I am sorry that you could not take comfort in what they were saying, because unfortunately, I understand well what they are saying when they tell me that they are sorry for me, because I am sorry for me too.

Colon Cancer Strikes Again

Shortly after we left my mom and step-dad’s home, like less than an hour, I came across an extraordinary post on Facebook.  It was from the wife of my husband (and mine) college friend. He was actually a roommate of my husband’s as well.

It turned out that two years ago from that day (28 Nov) he had went to the ER with pains.  He believed it was probably his appendix.  They had a small guy that was about 6 and had had another baby that was 8 months old at that time.

It turned out that it was not his appendix, but stage 4 colon caner.  They went to the local oncologist and he told them that it was inoperable and that they maybe had two years.  He should start chemo immediately.

They did not take his answer lightly and they were recommended to seek a second opinion and to go to Dr Heinz-Joseph Lentz at USC School of medicine.  They did.  Two surgeries, chemo and 2 years later our friend was in remission.  I read the post out loud to my husband.  We had known that something was going on, there were posts about surgeries, but we had not understood what.  Now we did. I was dumbstruck at the similarities between our friend and my mother.  Pain in the same area, three tumors in the liver and in the colon, it was so similar and I don’t believe in coincidences.

My husband told me I needed to share this with my step-dad.  I didn’t want to, because I knew what his response would be. He would tell me no, that they would not seek a second opinion there and that they would stay where they were for treatment.

Predictably, I was right.  When he finally replied and sent me the email, I was crush and angry.  My husband tried to console me and told me at least now I wouldn’t blame myself.

I told him that I never would have blamed myself because this was the outcome that I predicted and knew that would happen. Now, I would not forgive my step-dad for his refusal.

I replied back with one more email, trying to appeal to his sense of logic.  I systematically addressed all the points in his email and then asked him to consider sending Dr Lenz her medical record.  Dr. Lenz has an impressive resume with the work he does in colon caner.  It might be that there would be things that would disqualify my mother from his care. I don’t know and neither will he unless he tries to see if they can help my mother.

I have not heard if he decided to send the records.  It is my sincere hope that he will.  I know that he is worried he might offend her existing team, but honestly I don’t really care.  What if Dr. Lenz can save her life from something that they have decided is ‘incurable’.  I know that they are extremely comfortable with the team that they have, and for that I am extremely grateful.  But, I am also certain that the information was given to me for a reason.

 

In the meantime, I am scheduled for my first colonoscopy the first week of January.  I am fairly confident that I will be ok.  I have never had the problems that my mother had with bring regular and all. I am worried though, because we do have family history and genetics running against us. I think that I may end up doing a genetic test for the markers in the future. I am worried about how this might affect my children.

I am not handling the stress well.  Currently, I have bitten a bump into my check and scraped up the inside of my nose so that there is a sore.  My anxiety is crazy high, so I have been trying to exercise more.  Unfortunately, my knee is still experiencing instability.  I need to go back to the orthopedic  Dr in January as well.  I fell a second time in Sept and I am wondering if I might have done more damage.  I suspect that I have due to the amount and type of instability that I am experiencing.  I wondering if I haven’t also busted out the ACL on this knee as well.  Ugh.  Just want I want, two knees repaired.

Thanksgiving

We lived overseas for many years and only recently moved back.  We really got used to spending the holidays by ourselves.  So moving back, we moved to a city that we had family already in.  They were kind enough to invite us to go out to dinner with them.  Instead, we offered to host them at our home.

The first year was fun and the second year we had family, from the other side come into town to join us as well.  That year, one of the cousins canceled in a fit because he was upset with me.  So, going into the next year I canceled so they could go back to their own thing.

It turned out that we didn’t stay in town either.  With my mother’s cancer dx, my older two 20+ college students wanted to go and see my mother. They had not seen her for almost 2 years and they had not seen her since the cancer dx.  So, we made the plans and headed out to see them for a week.

It was quite the spectacle.  My sister and I had made up before the dx, so she and I were ok and talking at least.

But mid-week we were unceremoniously kicked out of my mom and step-dad’s home and regulated to a hotel.  I was told by my step-dad, ‘that his family” meaning his sister, her friend and her friends mother, and his brother and his brother’s wife would be staying at their home.  To be fair, my brother and his girlfriend were also suppose to be regulated to a hotel as well.

As the time grew closer, plans changed and morphed.  My step-dad’s brother and wife decided to rent a RV and drive it up.  They stayed in the RV.  IT freed up space for his son and his son’s girlfriend.  My cousin came up at the last minute, so he was given a place to stay in the house.  My brother’s girl friend also decided not to come, so he was also found a place to stay in the house.  My step-dad also offered a couch to one of the kids since we brought our dog, He did not think that we would be able to find a hotel that took dogs, but it turned out that we did, so we declined the offer.

I am still not sure if I should be offended that we were kicked out or not.

I am also on the fence about going back to such a big family gathering.  It was so chaotic.

One of the things that I have learned about incorporating families together is the importance of melding family traditions.  I truly do understand.  My first Thanksgiving away from my family was with my husband’s family.  We were not married yet and he asked me what was important part of our families traditions.  At the end of the day, when I was helping clean up, my soon to be father in law told me that basically they had done a whole big thing on my behalf.  I was touched and felt bad all at the same time.

Fast forward to this year. My intention was to come in and help my mother do what she couldn’t this year. The chemo has taken a big toll on her and she is tired so much easier then she used to be. She is also experiencing chemo brain. Which is a bit alarming, but thankfully will reverse itself.

 

In the process, other family members were popping up and offering to make and bring things.  It was so difficult because in particular my sister and I were each complaining to my mom that we wanted her recipes.  We didn’t want to have things that we weren’t used to.

 

My step-dad’s brothers wife had brought green beans one year and she had used a recipe that used cheese.  The family was not pleased so, my mom made sure to make them herself.  A aunt tried to bring pies and potatoes but was regulated to just pies.  My mom wanted just mashed as did we.

My step-dad’s sister’s friend that was coming brought roasted veggies and a salad.

 

My sister brought the stacked salad that had been in my step-dad’s family forever. Her fiancé made a smoked turkey, sweet potato pie, and sweet potatoes like my mom made.

 

I made the pumpkin pies (I don’t eat them, but I don’t think that they were my best attempt this year sadly) and my husband made homemade rolls. He started because he really disliked the ones that my mother used to buy years ago.

 

My mom made the green beans with homemade mushroom soup, beans from her garden, stuffing, gravy, and cherry pie.

My step-dad’s brother’s wife was very insistent on bringing something.  She made an apple pie with crumb topping, and even though it wasn’t my mother’s it was good albeit under cooked.

She also was given the sweet potatoes to do as well.  My sister and I were definitely a bit worried about the out come, I voiced concern and specifically hoped there would be no OJ added to the recipe.  I was told to basically shut up by my step-dad.

While she didn’t add OJ to the recipe, she did add nuts.  I ended up skipping them and slightly in disgust.  Partially, because while she was making them she proceeded to tell us how she was a terrible cook!  I also ended up skipping the ones that my sister’s fiancé was so kind to make and bring, I think in an effort to make my sister and I happy.  I was just over it all I guess.

Don’t get me wrong, I really do like my step-dad’s brother’s wife. She is a sweet girl and definitely better than wife number 1.  She was a great help in the kitchen and she and I peeled the potatoes together for the mashed potatoes. I was just over it because I am honestly worried that this was my mom’s last thanksgiving.  I wanted it to be one of her making that she still maintained control.

There was already talk about next year’s celebration and my step-dad’s sister was offering to host it at her house.  I know that her best friend will also offer to put people up in her house too, if that’s where they end up.  I am pretty certain that I won’t be going.  While it was nice to see all the family, I also know why I like the smaller gatherings.  Maybe we will consider doing Christmas with my mother and step-dad instead.

There is also the possibility of hosting at my house, but no one seems to want to come out my way, which is fine.  My husband’s family will come to Thanksgiving with us.  Sadly, when we canceled out plans with them, they had Thanksgiving alone by themselves, which made me sad.  I did tell my mom and step-dad that if we do come their way next year, that we also needed to include my husband’s parents.

The Loss of Memories

I am in for a long grief process.

I am grieving because I will be losing both of my biological parents before I reach the age of 50.  That is scary to me that I will lose them both so young.  It puts my own mortality and fragility into question.

I am also grieving because another thought occurred to me, when my mom goes, I will lose her knowledge and memories of her parents and her precious memories.  I know that a lot of her childhood was not always happy.  My grandparents fought and she remembers my grandfather being violent with my grandmother, even chasing her around a table during one fight.

I know that my mom has long blamed my grandmother’s affair on breaking up the marriage of her parents, but I think that the violence that my grandmother suffered at the hands of her husband had a lot to do with it as well.

I guess my next visit with my mom will need to be spent asking her about her memories. I want to know things like, what was grandpa’s favorite color or his favorite cake.  Mundance information for sure, but little things for me to cling to as my own memories of my grandparents fade away.

I have already missed this opportunity with my father’s parents.  I have realized now, as I go through the remains of their possessions, that I really want to know more about them. The little details of things that I never remembered to ask.

Chemo Resistance

My uncle’s cancer was chemo resistant.  My mom completed a full cycle of chemo and she was having some positive results until the last CT scan.  It was then we learned that the cancer had not shrunk but instead had grown.  Her cancer had become resistant to the chemo she had started.

My mother was not really surprised to hear the news, as she had suspected that was going to be the case.  She has not been feeling good, she is also not eating well either.  So, while the news was not necessarily surprising, it was still depressing.  When I talked to my mother, she seemed proud of the fact that she did not cry or break down when the delivered the news to her.  She believes that it is important to show strength to her palliative care team.  I did not have the heart to tell her that she did not need to show them strength.  I also realized that the team would probably chalk up her reaction to shock.

The news was not a surprise to me either.  I had a gut feeling that this would be the case. I have been consistently saying that I wish my family would move up the date of an important family event, I have been convinced that my mom was not going to make it to the event. Even though I had a feeling this was going to happen, it did not take away the shock and worry that I have been experiencing since.  I know that part of this fear is related to my uncle’s experience with his cancer being chemo resistant.  Part of this fear is also related to the fact the the survival rate of stage 4 colon cancer is super low.  I believe that the average is 18 months.

My step-dad called me the day after he delivered the news via text and told me some additional things.  He told me how she has not been eating well and losing weight.  He also told me that they often make plans to go away for the weekend, but they have often had to cancel them because she was not feeling well enough to go, it is a day by day battle for her essentially.

My mom really wants to go to Hawaii.  They had scheduled a trip to go, and after a contemplation they have canceled the trip.  She really wants to go, it is a bucket list thing for her.  I hope that the new chemo will give her the ability that she needs to rally so that she can go in December.  She was talking to me about a trip they have planned to Alaska next year, as she was telling me about it I silently wondered if she would be around for the trip.

She starts the new treatment tomorrow.  It is an aggressive chemo that can have some really harsh side effects.  I hope that hers are not as harsh as they can be.  I also hope that with the chemo she will be able to rally again to how she was when we visited in the summer.

In the meantime, we are planning to spend Thanksgiving with her.  It will be a big family affair with a lot of family there.

Reality

The death of my uncle really brings in the reality of what is happening with my mother.

When my uncle was dx, the doctors made clear to my aunt that it was incurable.  I had to look up the specific liver cancer and read about it again to remember why.

My mother’s stage IV colon cancer is also incurable.  It has metastasized into her liver.  Currently, she is considered stable because the tumors in her liver have shrank since the last CT scan.  The numbers are not in her favor though, according to what I have read: “relative 5-year survival rate of about 14%. This means that about 14% of people with stage IV colon cancer are likely to still be alive 5 years after they are diagnosed.”

I know that she may beat those odds, but realistically she will not.  For now we ride the up’s and downs with her as she and the doctors continue to fight the disease.  I know that they will fight until the cancer makes them stop because the quality of her remaining life   will outweigh the side effects of the treatment.  I do not have a magic ball to see when that day will happen, I just know that the thought sends tears to my eyes and dread and anxiety to my stomach.

Losing my dad has grown harder and harder as the time has gone on.  But losing both of them will leave me an orphan.  It sounds crazy, we weren’t really even a nuclear family in the true sense of family.  We were only family on paper and because together they created me.

The reality is that in the future her body will not be able to fight off the cancer and I will have to say good-bye to her.

My Uncle

My mom’s older brother passed away yesterday.  This spring he was dx with a rare form of liver cancer that starts in the bile ducts and is hard to detect.

I have not seen him in years, I think that the last time I saw him was when my grandfather was recovering from one of his cancer surgeries, I was 19.  It was a super stressful time.  My mom has spent the summer taking care of him at my grandmother’s home and she needed a break.  I came in from school and spent the two weeks helping with his care.

My uncle arrived and to my chagrin became an additional burden.  He refused to cook or do anything to help my grandmother or I.  Then he would stand outside to smoke.  Things came to a big explosion when my grandfather wanted a cigarette and my uncle tried to give it to him.  I told them both no.  My grandfather had recently had his vocal cords removed because of smoking related cancer.

My grandfather was so mad at me that I wouldn’t let him have a cigarette that he flipped me off, swore at me (he couldn’t talk but he was cursing me), and cried in his anger.  At the time, I just laughed, but I was pretty horrified.  I do not regret my decision to not let him have a cigarette, even though my mom now tells me, it wouldn’t have been a big deal because he died two years later. Whatever.

I do have some memories of him as a child.  My mom and I drove her younger brother to Texas when I was very young.  It was after Christmas and I was not in school yet.  I remember that we were caught in a snow storm on the way.  I rode in the back of my uncles van and it was super boring.

We got to Texas and stayed with her older brother and his wife for awhile.  I do not know how long.  Then we later flew back home.  A year or two later, my Uncle turned up at my Grandma’s home, broken.  He had found out his wife had cheated on him and he left her.   He was broken because they had had a daughter together, which blew up later when it was discovered through a paternity test that she was not his.  I am not clear on the details because I always seem to have known that my uncle was sterile because they family always said that scarlet fever did that to him as a child.  I guess the paternity test confirmed that and the fact that he never had any children that he knew of.

He showed up and stayed with my grandma for awhile.  I remember  he would be very excited about something and then later, he would be crying unconsolable. So, as child it was hard for me to understand.

I saw him a few other times after he married his last wife.  But they were brief visits, and as a kid and a teen, I was not really welcome into the adult conversation circle….. I loved being part of it though, I learned a lot of ‘family secrets’ that way.  I was guilty of listening when I could.

I can’t really comment about what kind of life my uncle lived.  To me, it appeared that he struggled with a lot of  anxieties that may have prevented him from doing things.  I don’t think that he held a job for many years.  I remember during one of his visits, my aunt complaining and my grandmother pleading with him to get a job.  I think that his anxieties prevented him from coming to my grandmother’s funeral, but I am not sure.

I know that he had bladder cancer before this last bout of cancer.  It caused him to change his lifestyle and to stop smoking.  I don’t know what his hopes or dreams were.  I don’t know how he felt about not being able to have children.  There are so many things that I do not know about him.

I did have a few nice talks with him in the last few years.  I had embarked on a long search for our immigrant family and I talked to him a few times to ask him to search his memory for things that he remembered.  Before he died, I complied the research into a book and sent it with pictures that I had received from other family branches so that he could see where my research had taken me and what information I had found.  I still have a brick wall in the form of my great-grandfather’s family.  I was hoping that with the help of memories and such that I would perhaps be able to crack open that wall, but so far I have not.

I am extremely grateful that my aunt was able to talk him into sending in his DNA.  I am hopeful that with it and my mom’s DNA I can find the answers to open up that part of the family tree.  I was hoping to have one last chat session with him before he passed, but that is not possible.

Dear Uncle, rest in peace.

 

DNA and the secrets uncovered

If you are going to do a DNA test, I would tell you to expect the unexpected.

I felt confident that there would be no surprises which was a crazy mistake.

It was revealed that my favorite grandmother had strayed.  It was known in the family that there was an affair, a mutual one in fact.  She and my grandfather swapped partners with another couple.

While the news was a bit of a shocker, the information has actually been staring my cousin and I in the face for awhile now.  But we never really looked closely enough to figure out what it was really saying.  It was words out of the affected person who thought for some reason they had a different father, is what caused a reexamination of the DNA.  It was then decided that the affected persons gut feelings were indeed real.

I told my parent and I told the affected family members child as well and that it where I am stopping.  I feel that it is not my duty to shatter the reality of any other person.  If someone else wants to, that is their prerogative.

 

Cancer

Cancer has struck my family again.

My grand-father and his father both died from cancer.  My grandfather’s was in his throat, his father’s was in his stomach.

My mom was recently dx with colon cancer and at the same time, her older brother was dx with liver cancer.

Nothing is working for my uncle.  He has had two different rounds of chemo.  The tumors in his liver did not respond to either type of chemo.  My mom’s cancer is now considered stable.  No new growth and three tumors have shrunk.

I am now considered at higher risk for colon cancer and I have to start being screened this year.

This has really had me reflecting on the fact that I will be losing the last of my nuclear family in the next few years. I will be an orphan when my mom dies. It makes one look at family and family relationships.  While I was lucky enough to have a step-father that took me on as his own, it does make me wonder how strong are the family ties.  In my mind I have already started to distance myself from him and my half-siblings.  I think to protect myself from rejection etc in the future.

I am not particularly close to my half brother and while I am finally talking to my half sister now, we are not close either.  I will make no guesses or predictions on the future, things will just have to unfold as they will.