Having addiction run in your family is one of the hardest thing to shield our children from. Sometimes, we just can’t help our children.
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My daughter Katy was always a challenge – she’d not left the Terrible Twos – and when she got older, she was diagnosed with bipolar disorder and oppositional defiant disorder (ODD). As much of a challenge as she could be, she was also very pretty, smart, and funny. One of my favorite memories is how she loved to eat so much that she’d eat in her sleep – sometimes she’d fall asleep and wake up and continue chewing. No one came between her and her food.
My very favorite Katy moment was right after she was born, they laid her on me, and she lifted her head and looked right at me. Crazy, right?
I still hold that moment close to my heart – has gotten me through a lot of tough times.
Addiction runs in the family, her father was an addict, and by the time she was five, we divorced. He was a terrible, mean person, but never did anything that kept him from seeing his kids. One of my biggest regrets is that I didn’t just pack up the kids and leave.
By the seventh grade, Katy had begun doing drugs and skipping school.
We fought a lot and when Katy was 16, she told me that she wanted to go live with her dad. Instead of my usual, “you can go when the judge says so,” I said,
“You can go and you can come back if you change your mind, but if you do this again, you cannot come back to live with me. I can’t keep doing this back and forth.”
And that was exactly what happened, she stayed a few weeks and came home. Her father moved in with Katy’s grandfather, who was dying of cancer, and Katy helped out with him and the problems caused by cancer. She decided to stay with her dad and go to school there.
Her grandpa was on hospice which meant that he had a lot of morphine around. Later, I realized that her dad was taking his father’s morphine and giving it to Katy.
Morphine turned into methamphetamines and our relationship began to crumble.
By then, I’d gotten remarried and my new husband didn’t want her to live with us when she asked to move back in. I enforced my previous statement, telling her that she couldn’t come home. We even got a restraining order on her so that she couldn’t come near us.
Shortly thereafter, she moved back in with her dad.
In 2007, she married a nice guy; one who complemented Katy well. She was very manipulative and he was able to deal with it. Unfortunately, after he joined the Army Reserves and was deployed to Egypt, which left Katy alone with my newborn granddaughter, Rae. Her daughter’s birth, of course, was crippled with complications; she developed a uterine infection and a week after discharge, her uterus burst.
After her major surgery, the doctors told Katy that she probably couldn’t have any more kids.
Katy was a fierce mom. She was a good mother – very firm but fair. Rae still has excellent manners and is very well-behaved because of her amazing mother. During her ten day hospital stay, she fought the nurses to make sure she could nurse Rae. Once home, she was in huge amounts of pain. This is when I believe her addiction to opiates began.
With her husband away in Egypt, Katy got involved with an old friend and with her pain pill prescriptions used up, she turned to heroin. Our relationship was still very shaky – when I told her she wasn’t allowed to come to Easter, we didn’t speak for over a year. Even still, she let me see my granddaughter.
Drugs had rotted her teeth and beautiful smile. The poor thing had to have them extracted and get dentures. I was with her and it was gruesome.
For my own mental health, I had to distance myself from her. I couldn’t deal with the drama in her life – especially the drama with her father. He, and I believe Katy as well, had borderline personality disorder. She was a difficult person – always talking, needing help, wanting something, craving love, starved for attention, and it drained my husband and son. I’d try to avoid getting drawn into her drama, but she’d sense me pulling away and she’d draw me back in.
When Mike, her husband returned from Egypt, Mike began using heroin as well and the three of them moved in with my ex-husband.
On and off drugs, Katy was overwhelming.
At 56, her dad died due to multiple overdoses. He’d been a heavy drinker and drug abuser all of his life. As Katy had bought the drugs that killed him, so her half-brothers blamed her for their dad’s death. They became estranged, which broke Katy’s heart as she loved family above all.
Both Katy and my son, Chris were very relieved when their dad died because he was so cruel to them. Katy replied to someone who said that “he was in a better place” by saying that “no, he was in hell.”
In 2017, Katy began the process of getting clean and sober and had moved to a city with a friend to get away from her husband who was still using.
She’d gone to the hospital for something and called me afterward, stating that she’d been diagnosed with lymphoma – a kind of cancer.
I didn’t believe her.
I thought she was faking it and using the lymphoma as a way for us to take her in. We had a huge blowout and she turned around and left my house.
Thanks to the heroin, her husband Mike had a bad heart valve and needed open heart surgery, and, being a caregiver, she moved back in with him.
That summer, she ended up staying with us in our cabin in Pennsylvania and I noticed she was tired. Always so tired. She slept so much and so often that I wondered if she was on drugs.
Concerned, we took her to a hospital in Pittsburgh on Father’s Day 2017 where she was diagnosed with Acute Lymphoblastic Leukemia (ALL).
I remember staring at those three awful words written on a whiteboard in her room. She had been within days of dying. Days.
And I hadn’t believed her.
The hospital started her treatment and we had her transferred to the Cleveland Clinic closer to our house. From then on, I was on auto-pilot.
I was a caretaker too: my mom was bipolar which meant that I had to take care of her when I was a kid.
I was the oldest of four and my parents divorced when I was 15, so becoming her caretaker fell into my lap. She’d made numerous suicide attempts and was in and out of the inpatient psych ward multiple times a year.
My dad had a stroke 12 years ago and was in and out of the hospital and nursing homes for seven months before he died. I went multiple times a week to visit, it was nice to spend time with him.
I was raised to be a caretaker.
I stayed with Katy constantly from the moment she had been admitted until the day she died. There were a few nights that her friends would spend time with her so that I could rest. Otherwise, I slept on a chair that converted to a bed. I showered in the family showers and drank coffee from their family lounge
Katy’s first treatment course lasted five weeks and she was stuck in the hospital for the entirety of it. The staff was awesome. They didn’t even mention the track marks on her arms or asked if she’d done drugs.
And that was the beginning of the end for us all.
During the month of August, Band Back Together is going to be publishing posts about loss and grief. These losses can be perceived or real as we know that loss is universal. We welcome you to share the stories of what and who you’ve lost – parents, children, animals, sisters, brothers. Please share your posts with us by clicking here.
This morning on the way into town, I had a flashback of a phone call. A phone call I’d had with hospice, seven months ago.
I remember it well. I was in the back room at my parents house where I’d been staying for the last week or so to help take care of my mom. She was sick. She had taken a turn for the worse. She’d had Stage 4 Colon Cancer for four years. It had been four years of fighting: first chemo and surgeries, and then natural medicine and a special diet.
She’d lived far longer than the doctors thought possible. She’d outlived the projections of every website and message board I’d visited in my obsessive need to understand what we were up against. Her CEA (tumor marker) numbers stayed low and nothing showed up in her monthly exams for a long time.
Then, the numbers started to creep up. After three years of nothing, they’d found a new spot on her liver.
It only took four months to go from finding that small spot to being in that back room on the phone with a lady from hospice.
Mom had been getting intravenous fluids the week before. As weak as she was, we would help her get dressed, get her to the car, one of us on each side to keep her from falling, drive her to the hospital and wait the two to three hours to get the fluids and then repeat the process to get her home.
We’d done this every day for a week, but the benefits of the fluids were starting to be countered by the difficulty of the journey. She was getting too sick to make the trip anymore. We’d talked to her doctor, the hospital, to anyone we could think of to figure out how to get the fluids to come to her. We felt certain there had to be a traveling nurse, or someone else who could administer the fluids. If the problem was that insurance or Medicare wouldn’t cover the cost, we were all more than willing to pay for it.
We just needed someone willing to do it.
When I asked the lady from hospice if that was something she could help us with, instead of answering my question, she asked some of her own: What did I think was really going on? What did I think the fluids were going to do for my mom? Would it be better to keep her going as long as we could, as she got sicker and sicker? Were we doing this for her, or were we doing this for ourselves?
We discussed that Mom’s body wasn’t benefiting from the fluids as well as we’d hoped. Her liver and kidneys had already begun to shut down, and we knew she was experiencing fluid retention. In fact, the fluids we were fighting so desperately for may have been doing more harm than good.
I had one of those moments when the blood thunders through your ears, the air is sucked from your lungs, and time slows down.
She was so sick. Every day she was getting sicker. Of course we knew she was going to die. But until that moment, I’d been in fight mode.
This was the first moment I realized the fight was really over.
The lady on the other end of the phone waited until I stopped crying, and we made arrangements for her to come over to talk to the rest of the family. We’d been fighting this disease aggressively for over four years. It was going to take some professional help to transition from that all-consuming fight to helping our Mom let go and…die.
She came over and we all gathered around the couch where Mom was laying, and we talked about the fact that she really was dying.
It was singularly the saddest discussion I’ve ever been a participant in. Everyone left my sister and I alone with Mom. We talked about how this was really it. We told her how much we loved her, how we would be there with her through it all, and how we would be there to see her on the other side.
I wonder how she felt at that moment.
I think about that moment a lot. I regret that moment sometimes. I wish we’d stayed in denial about her death so we’d never have had that discussion. Once it was out there, it seemed like any fight she had went away. She was ready for it to be over.
My sister, my grown niece and nephew, my aunt and I all took shifts staying with her and Dad. At first we gently tried to get her to eat and drink, but in retrospect that may have been a lingering need to fight for her life. Eventually, even that stopped.
I’d stay for two days, then leave for one or two. I would go to work on the days I was away. Work became a sanctuary where my mind was otherwise occupied. As I drove the hour and a half back to my parents, I felt the heaviness increase until I had to drag myself up the steps and into their house.
We’d brought a hospital bed into their living room so I’d see her the minute I opened the door. Every time I opened that door, I wanted to recoil in horror. Our mom was laying in that bed dying! It couldn’t have felt more surreal.
By then, she was drugged and asleep, and unable to talk much even while awake. It was a living nightmare.
A strange numb detachment descended upon me. I’ve never been like that my whole life. It was like my brain just shut parts of itself off. I felt made of stone.
We held her hand. We brushed the hair out of her face. We put chapstick on her lips and swabs of water in her mouth. We told her how much we loved her over and over and told her we were going to be okay. We promised that we would never stop talking about her to our kids so they would always remember her. We talked about our hope for the future when we would all be together again and she would be healthy.
I hope that she felt some comfort from us being there with her. I know she was scared; her brow and face would be scrunched up with anxiety and pain, even though she couldn’t voice it. The best we could do was give her the shots of pain and anxiety medication that hospice had left for her.
The last time I saw her alive, the truth is, I knew it would be the last time.
I should have stayed. I should have stayed. I should have stayed.
But when my niece came over for her shift, I left. To escape the horror, the impending doom, and the despair, I went back to my house. The next morning, I talked to my niece and she told me that Mom’s hands were getting colder, and I knew I should go back. I knew the signs of impending death by heart; I’d read them over and over in hopes of preparing myself.
But I didn’t go back. I went to work instead. My sister called me at work to let me know she was at Mom’s. She held the phone to Mom’s ear so I could tell her that I love her. She couldn’t talk, but I could hear her breathing loud in an attempt (I choose to believe this) to communicate with me. My sister then called my brother and they had a similar interaction.
My sister was on one side of Mom holding her hand, and my Mom’s baby sister was on her other side holding her hand when it started. They told her it was okay to let go.
And she did.
I am so sad I wasn’t there when it happened.
I am also grateful.
Perfection isn’t always attainable and the cost may be too high.
Talk to your loved ones:
My sister P has an unrelenting drive to pursue perfection.
In the 70′s, she started working as a file clerk. She worked and worked, harder and harder until she was Vice President of one of the biggest banks in the world. All without a college education. remember as a child, she’d get up at a ridiculous time every morning to iron her clothes so she was perfect for her day. On the weekends, she would wash and detail her car so it was perfect, too. She was meticulous about everything she was involved with.
When someone gave her a gift she liked or someone did something well she exclaimed in a high pitch voice, “PERFECT!!!” I gave up on her level of perfect a long time ago, knowing I was never as driven as either of my sisters to keep up appearances.
She was nicknamed, after Olive Oyl, the character in the Popeye cartoons who was tall and slim with dark hair just like hers. My sister and I always struggled with our weight as children and adults but not P. She vowed as a junior high school student she would never be fat and she never was.
When P discovered she had cancer she fought extremely hard. When she was diagnosed with non-Hodgkin’s lymphoma 20 years ago, the survival rate was much lower. Her treatments were hard but she kept her spirits up. After her bone marrow transplant she got out of the hospital faster than anyone else had before.
Year after year passed and P remained cancer-free against all odds.
Yesterday, my sister K and I drove 3.5 hours each way to see P. It was a tough visit. She’s not breathing on her own, has 5 tubes down her throat, has had a heart attack, and her kidneys are working at 25%. She is being kept alive on machines because of an infection anyone normally could get at home. Part of this is because she had a bone marrow transplant and will forever have a compromised immune system.
After talking to P’s doctors we also discovered she partially did this to herself.
P didn’t eat enough and when she did eat she didn’t eat healthy foods. I can remember for years now if she ate a normal meal she would be in the bathroom with diarrhea or throwing up.
We found out yesterday along with all the medical issues P is facing she is suffering from long-term malnutrition.
This is a woman who has money. She can afford to eat but she chose not to. We know now she didn’t eat enough for a long time. In her search for her version of perfection she is fighting for her life and on life support with an infection that you or I would be in bed with mildly inconvenienced .
She always had Cosmo or Glamor magazines in her home and strove never to be bigger than a size 6. She was forever losing just 8 more pounds.
I hope all the women I know read this and take it to heart.
P will always suffer the effects of her long-term malnutrition. It is not too late for your daughters, it is not too late for anyone reading this who struggles as P does with food. It sickens me that my sister who I love so dearly is malnourished.
Talk to your daughters. Talk to your friends. Before you skip that meal to fit into that new dress think of P and eat something healthy. Trying to be some unreal version of a woman can kill you.
I have no words for the anger I feel about this. I have always hated the unreal images of women and the shapes I will never be, but this event takes my anger to a whole new level. If women as a whole don’t buy into the magazine image of a woman then the image of the size 0 woman as perfection will have to change.
Let that start here.
So I go to my 6 month check up with the oncologist. He’s been my doctor for years. Nice guy who gets me. I am in the exam room when a strange doctor comes in and out of my mouth flies: “Who the hell are you?” SNAP! Dr. Young-Thing proceeds to tell me he is a resident (oh crap), and that he is going to examine me. Like a deer in headlights, I say, “Like hell you are…where is Dr. S?”
I thought for sure he was going to push some hidden button for non-compliant patients. But he sits down and pulls up my chart online. Dr I-Have-Tattoos-Older Than-You proceeds to overview my ENTIRE medical history with me. We are talking 7 years.
“So you had cancer in 2005?”
I’m thinking: Noooooo, it was 2003 superstar, now get me the real doctor and do your fancy learnin’ on someone else.
“I am going to examine you–is that okay?”
To which I say, “No, not really, but I will let you see the magic that is my mastectomy!”
Oh, I was in rare form. (undoubtedly precipitated by a phone call with my parents not ten minutes earlier that mimicked Terms of Endearment–where I was ready to go Shirley MacClain on my dad’s sorry ass—”Get My Mom the medicine NOW!)
Dr Young thing: “I am feeling for your spleen, don’t find it.”
Me: “Wow, you need to study more.”
Dr. YT is fairly flustered by this point and steps out–leaving me the keys to the kingdom– My personal files online, for me to read! AHHH yeaaaaa! You know I did, kids. I sat right down and scrolled through that puppy like I was on a shopping spree at eBay. Okay, you ready…Here it is…the undeniably recorded in history and for all of UCLA and the world at large to read as a description of me as written by a my oncologist:
“This is a pleasant lady, alert and oriented x4, in no acute distress”
A resounding endorsement for Zoloft if I have ever heard one.
By then my real doctor, the author of my epitaph, comes in. I tried really hard to be “pleasant, alert, oriented x4 (not sure what the highest possible score is, but I am optimistic). Now, he has passed several of my is-this-doctor-a-dipwad litmus tests and so he is familiar with my work as a pain in the ass patient! He does his thing, and I tell him they should tell folks before they send a resident in to a patient.
He asks, “Why?”
“Because I had cancer, have no boobs, and a right to choose who looks at the train wreck that I call a body, reads my history, and for that matter is in the same room with me.”
I think I lost points for “pleasant lady…”
But then I look up at Dr Young Thing, and see his name tag. “Dr. Krishna” to which I said, “man, not much pressure with that name, huh?” They both started laughing so I think I got some points back for pleasantness.
The best…and I did this for all of you…is when I left. I saw yet another Dr. Young Thing standing in the back office. He was beyond GORGEOUS! I said to the whole staff, “I will have him as my resident next time, thanks”. Could have heard a pin drop…
Love to all of you pleasant, alert, and oriented x4 women out there who are only occasionally in acute distress…
Poison Extraction aka Leukemia Part 1
Poison Extraction aka Leukemia Part 2
Twenty years ago today, I was a little girl who had just been on her first major road trip.
My uncles, some family friends, my sister, and I had driven the 20+ hours from Phoenix to Houston. I had no idea what to expect. I was so conflicted because in my mind, Houston, Texas looked like a city from an old western movie. Yet I knew Mom was there at MD Anderson Cancer Center, which is the best cancer treatment center in the world. I had such a hard time picturing this big fancy hospital in the middle of a town made of wood buildings and dirt roads with horses.
Turns out Houston was a lot like Phoenix only GREEN. I’d never seen so many green plants and rainstorms in my young life. And MD Anderson was mind-numbingly huge and complex.
And my mother, well she was a pumpkin.
That was my first thought anyway. When she had left Phoenix she’d had SOME hair left. Now she was completely bald and the medicines they’d given her had made her swell up a fair bit and turn orange. Clearly, my mother was a pumpkin.
She was in an isolation room. I could see her through double-paned glass and talk to her via intercom. I couldn’t hug her or touch her. No one could. The doctors administered drugs to her through long plastic gloves built into the opposite wall and once a week a person in a bubble suit could come through the air lock to clean her room. Everything that came in had to be sterilized.
After 3 days of radiation treatments, where she received the same amount of radiation that you would have at Hiroshima when the bomb went off, Mom had no immune system left. The littlest bug could kill her in a few hours.
I remember watching the day of the transplant. We were all gathered around the window. Momma was SO so excited. She held the catheter line up for us to see as they pushed in 3 BIG fat syringes of bone marrow in through the tubes that came through the wall. She gave us a big cheesy grin and a thumbs up!
Afterwards, we went to check on my Uncle Mike (one of my mother’s younger brothers) who was her bone marrow donor. He had 6 little round needle holes in his butt. 3 of them on each cheek. He told Mom that now he can really say that she was a pain in the ass. (In fact until Mikey passed away 2 years ago, Momma would call him every year and thank him for saving her life. And every year he would say “I love ya sis. You’re welcome but you’re still a pain in the ass” )
That was 20 years ago.
I still bawl like a baby every time I really think about it. I have no words to express how amazingly grateful I am to God, to science, to the doctors and nurses and to my Mother for being a fighter and going to hell and back so that I could grow up with my Mommy. I would not be a live today if it wasn’t for her.
In so many ways, I owe who I am to my amazing mother. You couldn’t ask for a more loving, accepting, caring and compassionate person. Don’t get me wrong – she’ll kick your butt up between your ears if you really need it, but only because she loves you. I think she has done a SUPERB job of balancing being a mother and being a friend, and that’s not an easy line to walk.
For better or for worse, hers is the voice in my head. I found that out when I went to college. She’s the one I hear encouraging me, chastising me, reminding me and helping me.
She hasn’t always been perfect but I can say this: Whenever it has been pointed out to her that something she has said or done was not right or hurtful, she never, EVER did it again.
As a kid, shortly after the transplant, I presented a picture to her transplant physician, Dr. Anderson (who just happens to share a last name with the hospital). It said in big crayon letters “Thank you for saving my Mommy’s life”.
I want to say it again. Preferably through a mega phone from the top of a tall building, on the 6 o’clock news and on the front page of every paper in the world, but I’ll do it here:
Thank you to every one involved in making it happen. Thank so much for saving my Mommy.
Twenty years, baby. Here’s to 20 more and many, many more after that!
Some background before we begin- My Mother has had cancer 3 times. Starting with Leukemia when I was 8, Melanoma when I was 15 and Mucal Epidermoid Carcinoma, stage 2, when I was 20. My Father also had Lung Cancer (Non-small cell carcinoma, stage 1) when I was 22.
These are my stories.
It was spring. I was 8 years old. Mom found a couple lumps on her neck but we’d been digging in the yard the day before at the new house so she dismissed them as some sort of bug bites….
My parent’s didn’t want to uproot me this close to the end of the school year and so I would get driven to school every morning and then I would walk back to Grandma’s house with my cousin Josh and hang out there until Mom or Dad could pick me up after work.
One day Dad came to get me, I can’t even remember if it was early or late now but I remember it was out of the normal time he usually came. We had to go to the hospital. Momma had “collapsed” at work.
What I found out later was that what actually happened was that my Mom had been walking down the hall way at work (she is an RN) talking to some coworkers and had passed out. She’d shrugged it off as hypoglycemia getting the better of her. But then a few hours later while bending over a patient it happened again. This time they insisted on taking her down to the ER for tests.
We sat for 3 hours waiting on a single blood test. Turns out they tested it on 3 different machines and the results were so off they decided the machines must be broken so they called in a specialist to count it by hand.
I don’t remember what the exact white cell count was. But I remember it was SO massively off what it should have been. Lots of extra zeros. I knew that was bad but at 8 years old I didn’t know much else.
The next day, my Aunt Lois came to stay with us. I really liked Lois, even if I wasn’t so fond of her cooking at the time (she’s my organic aunt). Mom and Dad were just going to go get one test done and see a doctor and then they’d be home.
Momma never came home to that house. In fact she didn’t come home again for nearly a year….
It was me, my little sister, Beth and my cousin Kaydee sitting in the living room floor watching Bambi of all the horribly perverse things when the call came. I remember Lois looking pale and repeating like she couldn’t believe it: “She’s got cancer??”
All I knew about cancer at that time was the week before I’d watched one of those stupid hallmark specials designed to make you bawl your frigging eyes out; the lady had died of cancer because she’d refused treatment so she could deliver a healthy baby.
I turned back to look at the TV in time to catch Bambi wandering alone in the snow asking “Mother? Mother?”
I swear to God I am NOT making that up. I jumped up and shut that TV off as fast as I was capable of. I couldn’t watch Bambi with out FREAKING OUT for 10 years afterward…. I still don’t like that stupid film….
Lois explained that Mommy wasn’t coming home that night. They were admitting her to the hospital straight away to start treatment. My Mother had Acute Lymphoblastic Leukemia (ALL). They even initially misdiagnosed her with another form of Leukemia, maybe it was wishful thinking b/c ALL in adults is bad. Like, usually they have enough time to diagnose you, admit you and then you die, levels of bad. Its more commonly found in children where it takes a much less aggressive course than it does in adults.
In a lot of ways, I look back now and realize my childhood ended in that living room that day. I have a lot more to share. And I will but I can’t right now. Maybe tomorrow….
I am the child of a cancer survivor and this is my story.