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.
In June of 2017 my daughter was diagnosed with leukemia. She passed away in November. My husband and I have custody of our 11 year old granddaughter. Grieving is taking it’s toll. Last month I was admitted to the hospital for being suicidal.
I think about my daughter all the time. I spent every minute in the hospital with her for 5 months. Telling my granddaughter that her mom was dead was the worst thing I’ve ever had to do. Whenever I go outside for a smoke, I think of my daughter. Whenever I drive the car, it reminds me of the drive to the hospital.
My mind won’t stop thinking suicidal thoughts. My brain constantly hammering me with negative thoughts. I’m hopeless, sad and feel out of my body. I don’t recognize my thoughts or myself. I am so lost. The emptiness is everywhere and I don’t know what to do.
I’ve been treated for depression for years and have had suicidal thoughts the entire time. I spent 2 days in the psych ward. I slept most of the time. I attend an outpatient program and went to a new psychiatrist today. He said my bipolar diagnosis was incorrect and adjusted my medications.
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!
I think this post is going to be one of many. There are things I am remembering that I haven’t thought about for years. I read the intro to Band Back Together and I felt my chest get tight and tears start to form. Just the premise – a place to share, fully, completely and be safe. Maybe it could help somebody else. Maybe it will only help me. But either way I think some of these demons aren’t as dead as I thought so we’re going to start try to pull them all kicking and screaming into the sunlight. I’ll submit them at the Band but they’ll all be posted here for sure.
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.
