This type of cancer affects your blood, your bone marrow and then… everything else. Know what sucks even more? The chemotherapy treatment for leukemia. It is so long, so complex that the medical team taking care of Katy wouldn’t even give her the whole plan at once – they had to wait to see if she responded.The first 4-week phase actually lasted for five weeks.
She received two types of IV chemo: an oral chemo, and a spinal chemo. To check the progress of the treatments, she underwent regular bone marrow biopsies and ended up in intensive care more than once.
During the first treatment, Katy asked for palliative care to begin as she wanted to stop all treatment. She’d never really wanted treatment – she had seen her grandpa die of lung cancer and didn’t want to be sick like he had been.
The doctors pulled out all the stops to convince her to continue – brought a therapy dog up to her intensive care bed and let it get up on the bed with her. She got involved in art therapy, music therapy, and had a psychiatrist, psychologist and a pain management team.
She continued with the treatment.
During the first few weeks that she was in the hospital, I developed cellulitis in my ankles that was spreading up my legs and I popped into the ER twice to get treated. During my second bout, the doctors wanted to admit me for IV antibiotics. I needed to be with Katy and declined. Instead, I just put my feet up whenever we were hanging out in her room.
Too weak to walk any real distance, she was pushed in a wheelchair while we roamed the halls, often popping outside to have a smoke. Katy, of course, made two great friends in the smoking area – a transsexual who had heart problems and a pregnant woman, just like she’d made friends on her leukemia floor.
The ICU nurse became a friend of the family and after a particularly nasty side effects of chemotherapy – the lining of her colon separated and shed, leaving her to poop blood for a week. Katy was then put onto a liquid diet, and being my food loving child, our old neighbor made her “stringy roast” which Katy happily ate.
Katy hated that doctor and refused to speak to her, so he and I had conferences in the hallway. Thankfully this doctor was only rotating through the leukemia ward and she wasn’t stuck with him.
When Katy was discharged the first time into her husband’s care, this doctor ordered the removal of the PICC line without discussing it with us which turned out to be a major pain..
When we returned for her first outpatient treatment, they, of course, didn’t get a vein and she had to be readmitted to the hospital. The PICC line became permanent to help treat the leukemia.
The staff at The Clinic was great! Originally, one of the nurses who had a strong personality (and Katy didn’t like) started her chemo treatment but they began to open up and bonded.
The medical assistants were also good friends of Katy’s, and once, her favorite aide (who wore a wig like Katy did), so the medical assistant put on one of the wigs while Katy put on the other. They giggled and took pictures that night.
The same aide on another night made a video of the clocks turning back and Katy wanted to see it. She asked to see the video, but he misunderstood (haha!), so we had to spell out c.l.o.c.k video.
Because nothing comes easy, my husband was diagnosed with throat cancer, living in an AirBnB near The Clinic so that he was able to complete his seven week outpatient radiation treatment. He had been taking care of Rae while we were in the hospital.
While he was away getting his treatment, Katy came home and we decided that we could take care of Rae ourselves. With the neighbors help, we could go to Katy’s long treatment appointments without worry.
My stepkids saw my devotion to Katy and her treatment and felt that I should be there for their father, my husband. I felt that he wasn’t nearly as sick as she and could spend time alone while Katy couldn’t. We’ve only recently mended bridges.
More and more, Katy caught infection after infection and had to spend more time in the hospital. Her beloved PICC line was replaced she got a port placed instead. Unfortunately that too became infected and it had to be removed.
Pain was a major issue for her and while she was in the hospital, she had a morphine pump and a fentanyl patch. I was the one doling out her meds and occasionally she overdosed, necessitating Narcan.
She was in the hospital during Thanksgiving weekend and my brothers (her uncles) came to visit, which she loved. I’d given her a pain pill before they got there and was nodding off. The Sunday after Thanksgiving, my husband brought Rae – who was now ten! – to see her as well.
After that visit, the nurses administered Narcan again after questioning me – and lecturing me – about giving her extra pain medications. They were very nice about it but I felt awful.
Katy then developed a serious fungal infection and was moved from the leukemia unit to intensive care.
One of her ICU nurses made friends with her and visited when she could. That night, when her favorite nurse came by to visit, she told Katy, “see you tomorrow!” to which Katy replied, “you’d better!”
Those were the last words she ever spoke.
Her brother came up for a visit and while he was there the medical staff had to remove her port. Hospice stopped by as they were putting in another line which was very painful, but I’d told hospice that I’d given the go-ahead so that she could get some pain medication.
We spoke to hospice and the hospice staff said it would be hours to days before she passed.
We asked that she could move to a room down in the leukemia unit, where the staff began to say goodbye. We saw them often as they came in to administer medication to make her feel more comfortable.
A sign was put on the door to see the nurse before entering the room; I always wondered what those signs were for. My son and I slept in the room, talking to her and holding her hand before we went to sleep.
When I got up in the morning, I said, “Good morning, Katy” and went down for coffee and a smoke When I returned. I could tell she was gone.
She was so very still.
And like that, she was gone.
I was so glad that our relationship was good during the months that she was sick, but I am devastated that she had had such a rough life and such a tough struggle with addiction.
I felt everything. All of it.
Later, I had to go home and tell Rae that her Mommy died.
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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.
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.
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.
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.
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.
Addiction isn’t called a “family disease for nothing.” The family of an addict is just as impacted as the addict.
This is her story of her son’s addiction:
My child has become an addict and loving my child is so very hard. I’m trying to find my happy as I learn to deal with his addiction.
With the overload of health issues around here, along with the common “life stuff,” I willing took a break from blogging after the last attacks from trolls; trolls who don’t know me, know my child, know my life, know my situation, and will never understand my life or my thoughts.
Simply: I took a break because I wasn’t strong enough to keep going,
Three blogs, five days a week, and two little freelance writing gigs with groups have kept me tied to the computer dumping out my odd take on humor, insane fake advice, and occasional a vaguely serious topic.
I have decided I will blog, on my blog, and the trolls will not, cannot affect me. I won’t allow them that kind of power. I have to share this story because as odd or awful as this is, I can’t believe I am the only one. Sometimes knowing you aren’t alone, can make a differences on your life. It has in mine, just like everyone here at Band Back Together.
I call it “living” but it’s really just existing – when I can muster the strength to push the elephant in the room to the back of my mind. This horrible addiction elephant.
When someone you love makes horrible choices, you can still love your addict child, but you also have to make a choice.
I made a choice to love from a distance to allow my son to deal with his addiction on his own time, allow that person to do things at their will, wherever they wanted. The condition was: I would not support that person, their activities: not emotionally and definitely not financially.
Of course that comes with a higher emotional consequence for me, a soul-eating, mind -boggling, hellish existence.
Torn when the phone doesn’t ring, furious, emotional and torn when it does. There is no happy medium, is no mutual enjoyment of life, it’s an inner ring of hell.
It’s odd how the human brain learns to process things so completely outrageous and unacceptable if they happen often enough; the brain removes logic to save the heart. The brain knows if one more little piece of your soul falls to the floor, you will collapse and finally fade away.
You can’t fix it, they don’t want to be fixed, no matter how absolutely insane and ludicrous the situation, you cannot even point out how completely illogical the situation is, let alone offer solutions. There are no less than 683 million reasons why all of your ideas are completely stupid.
You learn to focus not on the highs, not on the lows. Not the shocking news, but only that you love that person, your child, who just happens to be an addict.
You make sure whatever you say won’t offend them, or their choices, and you make double damn sure that person knows you love them, you love them deeply, you love them completely, you love them from your soul. You only want the best for them, safety for them, happiness for them.
No one really has the same idea of happiness.
it took me 43 years to realize that.
Another thing I learned; just because it’s ” the normal” thing that you’d make anyone happy, happy and delighted and feeling so very lucky, this can seem like hell on earth to someone with a different view of happy. So who am I to attempt to enforce my idea of happy on anyone? Simply put, I am no one. I am just a daughter, a wife, a sister, a mother, an aunt, a friend.
I am made up as we all our of a unique cocktail of our childhoods, our teachers, our elders, our peers, our life lessons, co-workers, books, and shows we have seen. Just a big casserole of a human being trying to find “happy.” When I achieved happiness, I assumed it would be wonderful – more than wonderful – and that, in turn, everyone else would become happy. Everyone would see how hard work brings happy, how loving each other brings happy, how walking the right road, singing your own song, and smiling would obviously land you in happiness.
The past 20 years, I tried to shove people into the happy, I tried to drag them into happy, push them in, beg them, lure them, slide shows of happy, handmade cards, long emails, song dedications, heartfelt talks, and hugs, I could surely get them to happy. Once they saw happy they would be like “duh, I want to be happy too!”
I was wrong. Their happy was so different than mine so I had to accept they would not be in my happy with me. Maybe they were taking a different route, and we would meet up in happy. Maybe their happy just meant more pit stops, more experiences, different criteria, maybe their happy would never lead to the same location as my happy. What would I do then?
Their happy could be really good for them, so I will work on being happy for their happy.
Little crumbles of your heart fall as your soul tears.
In the end, all you really want is for them to be happy. You convince yourself not to be such as narrow-minded selfish ass who demands everyone’s happiness is within arms reach of your happiness. We are not all alike, and really, what a boring world that would be. Keep telling yourself this as it makes it easier to persevere your heart, mind, and soul. Besides, it makes them happy that you are happy for them. It’s painful but it’s good for them and for the relationship.
Then the call comes, not a happy call, you are prepared because you know when this disease spins ’round, the calls come in two forms and two forms ONLY.
One, the world’s best thing ever, everything is amazing.
The next call, though, could be in a week, a month, a day, or within several minutes: the world is ending, there is no hope, no escape.
There’s not a single thing you can do to make it better. So you listen, try not to cry, remembering to love, offer helpful solutions, offer to make arrangements or calls, you do what you can and it’s usually for nothing. It rarely works out, but you make damn sure they know you love them so much you can’t breathe when they are in pain.
The calls – you see the caller ID – it’s a number from a state that you don’t know, but you do know who is on the other end, you never know the type of call, only that it’s from them. So you take deep breaths and you prepare to play the roulette game of their life. What kind of call you don’t know it could be: an incredibly fantastic words of grandeur.
Or the call can be gut-wrenching, heart-breaking, sobbing pleads for help.
You don’t know, because you can’t know but you answer the phone, inviting the roller-coaster of love and hate and pain into your world.
Nothing surprises you now.
As long as it’s their voice on the end, you are prepared, it’s now become common practice. You’ve learned to stop yelling, begging, urging, and learned to focus on conveying the fact that you love the elephant in the room. You love that elephant when your eyes open in the morning, and you love that elephant when your eyes close at night without a tear running down your cheek. No one sees your tear.
No one hears your cry and no one, no one can understand why this elephant is needed, deeply; it has become comforting.
Then as you are in your happiness on the back porch wind blowing you sit with your little family, cross-legged looking at your happiness, eating sandwiches, and thinking how peaceful and loving and happy this all is.
The phone rings.
The addiction elephant steps outside. The elephant sits on your chest, takes your breath, and overcomes you. Sometimes, when that elephant climbs on you, you compartmentalize you soul, your heart, and your brain as this allows you to attempt to speak in a sane, calm, tone, using gentle words, no blame, just love.
The call ends, with mutual ” I love you’s.”
The happiness is now gone for them as they are faced with a very adult matter that can’t be “worked away.”
You don’t remember the rest of the happy picnic: the people in your happiness with you do not have a conversation about it. You move on as you do after every call. But something is wrong, very wrong
You can’t tell anyone, yet you don’t cry, you don’t sob, you don’t fall to the floor, you don’t steal a car to get to the addiction elephant to hold them.
What the hell is wrong with you?
Why are you not responding like a human?
Why aren’t you happy?
Why not like the other times?
You haven’t fallen apart yet.
Will you fall apart?
Will this change your ability to move forward?
You know that If this person comes back, can you handle it?
Can the happy team handle it? What will be the cost of the elephant if you don’t?
What will be the cost of happy if you do?
I know the other shoe will fall, there’s just no way to process this without dying more inside. Maybe I am out of a soul, a heart, tears. Maybe I have been cried out, maybe I am stronger, maybe my brain is trying to protect me.
I am very much not okay, mostly because I feel okay, there is no way that I should feel okay.
Why am I not shaking, sitting in the shower crying, sobbing, and vomiting like I’ve done before when the bad news comes?
I’m not even shaking.
The shoe will drop, I hope, I beg, I have the strength, the knowledge, the wisdom, the compassion, the ability, the life experience, balanced with the brain, the heart and soul, to take this journey.
To share my happy, to understand their happy, to make a new happy, but most of all, to convey they undying, deepest of love and the basic humanity to make their happy the best happy I can.
Please find your happy; let everyone you know how much you love them – no matter what what makes them happy.
I don’t do resolutions. I have never been able to keep promises I made to myself, so I quit trying. However, I can’t say no to Aunt Becky, so I’ve been trying to figure out what “I will…” do this year.
I was coming up blank until my conversation with my mom this afternoon, and it hit me.
I will be OKAY.
That doesn’t sound like much, and yet it’s huge. There was a time when being okay seemed an impossibility. I recall it vividly.
It was April 2, 2005. I was two days out of treatment for addiction, and I was annihilated. That night, I reached the point of perfect misery. I didn’t want to live and could not die. I finally knew that I could not live that way anymore, and I took the first step. I surrendered, and the next day, I began attending Narcotics Anonymous meetings like my life depended on it.
When I first got clean, I didn’t think I’d still be clean 14 years later. I certainly didn’t think I’d ever be okay. But I kept coming back. I got a sponsor. I started working steps.
The idea that I might someday be okay never really occurred to me. There were other N.A. members who I thought would be okay. Some of them are. Some of them relapsed. Of those who relapsed, some made it back. Some didn’t. I never really thought about which category I’d fall into; I couldn’t think that far ahead. Getting through each day, each moment, was too much of a struggle.
Even when I found that each day wasn’t a struggle, I didn’t really think about whether or not I’d be okay.
Until today, when I was laughing with my mom about something that happened today. The event is irrelevant. The awareness it brought me today is what’s relevant. I realized that I just might be okay.
I don’t mean I am cured. I just finally understand that if I keep doing what I’ve been doing to recover from the
disease of addiction, well, I just might be OK.
For somebody who didn’t think she was worth saving when she reached out for help, that shit is huge.
Shit. It would take too long to tell you everything that I love.
I could go on and on about my Mr. Sunshine, my puppy, the shoes, the clothes, my smartphone; but I don’t think that’s the point of this “exercise.” Not for me, anyway.
For me, the point of these “exercises” is to look beyond all that. The point is to find the beauty within me. The point is to find the beauty in life. The point is to find the beauty in this moment.
We just came home from the neighbor’s house where we sat around the fire and ate hot dogs and marshmallows. Sunshine is on the phone with one of the men he sponsors. My puppy is asleep in the floor. I am writing my Dose of Happy post for The Band.
This moment is perfect. In spite of the ugly sofa and carpet in the magic bus, in spite of the fact that it is HOT, in spite of the fact that the house needs cleaning.
This moment is perfect because I’ve learned a few things over the last few years.
Thanks to Narcotics Anonymous, I learned that I am worth saving. Thanks to The Band, I have learned that stigmas are bullshit. Through my family, I learned that if I do not want to become discontent with my own life, I need not look at what others have. Thanks to friends from all of these parts of my world, I have learned that life is beautiful, I am beautiful, you are beautiful.
So in the end, for me, the point of this Dose of Happy stuffz is to remember. To remember that I am beautiful, life is beautiful, you are beautiful. Which leads me back to the original question. What do I love?
I love that I don’t look at what others have. I look at what I have. I look at how rich my life is. And it is rich.
I have my recovery. I have my friends. I have The Band. I have my family.
Aunt Becky challenged me to write an “I Will” post… Here’s my crack at it:
This is a year of major changes for me. The title is paraphrased from a book by one of my favorite authors, Maeve Binchy, who died a few years ago. One of the lessons I’ve taken from her books is that kindness matters and change is sometimes incremental, but the opportunities to change abound.
First the Goals:
Meet Baby (due end of June)
Complete Probation (October, possibly sooner)
Complete the 12 steps (currently on Step 4, which sucks, but I am finding valuable)
Start School (Sign Language Interpreting Program)
Graduate Treatment (possibly this month?)
Move into my own apartment (hopefully by March)
Stay sober (110 days and counting)
Practice healthy boundaries – especially removing unhealthy and negative people from my life and saying “no” to things that jeopardize my values/goals/self
Re-engage with Church
Learn to manage anger without becoming self-destructive
Stay Present and Enjoy the Journey
Practice Forgiveness – especially of myself
Never Stop Learning
Make good choices (especially financial ones)
Daily Maintenance (this is a concept from NA – aka The Four Simple Things: 1. pray honesty, out loud; 2. talk to another addict, preferably one sponsor or someone else with more clean time, honestly; 3. read literature daily; and 4. do something nice for someone else).