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.
So it’s time to Band Back Together for Birth Defects. Share your stories. Tell your tales. We need to learn about the birth defects that have touched YOUR life. Let’s rock out and tell the world OUR stories.
It’s YOUR turn, The Band!
I’ve only ever lurked on Band Back Together, but I feel like I need to tell my daughter’s story.
The pregnancy itself wasn’t bad, just the normal aches, pains, and nausea. Emotionally it was tough – there were issues found on ultrasounds, and my OB felt like it was her duty to present the worst-case scenario every time we spoke. I decided that if we had to hear bad news, I wanted it to be delivered by someone who was kind and knowledgeable, so we switched doctors and started seeing a maternal-fetal specialist.
He told us that there would be kidney issues when she was born, but nothing emergent.
My water broke 2 days before my due date. I had a good, quick labor. There was meconium in the amniotic fluid, but otherwise it went well. She was born just after midnight, with good Apgar scores. She weighed nearly nine pounds! She had no interest in nursing, and she wasn’t into the formula they offered, either. A couple hours later, her blood sugar started to drop, and then she stopped breathing. They took her to the NICU for observation. I’d worked a full day before my water broke, so by the time they took her away I had been awake for almost 24 hours. I was sent to a recovery room without my baby.
That day and the next are a blur. This was my first child, and I had no idea what to expect from a normal birth or a brand new baby. I only knew that this was not what I expected. I alternated between recovering in my room and sitting with my daughter in the NICU. She would barely take any food and kept even less down. There were multiple doctors coming in and out and multiple tests being done – blood draws, x-rays, upper and lower GI, etc.
Finally they determined that she had intestinal malrotation. That means her intestines were jumbled and twisted and not anchored in any way. If untreated or undiscovered, it quickly damages the bowels and then leads to death, essentially by starvation. Surgery was set for Friday night, the same time that I was to be released. I had no choice but to hand over my 3-day old baby to be intubated and placed under general anesthesia so that a surgeon could cut open and rearrange her guts.
My husband, my mom, my mother-in-law, and a close friend were with me during the surgery. Around midnight, the surgery was finally complete. They would only allow 2 people in the room with her at a time, so I stayed there while everyone else took turns coming in to see her. I can’t even describe how it felt to see the 3-inch incision across her tiny little belly. She had wires and tubes everywhere, and we were not allowed to hold her. I could tell she was in pain – when on a ventilator, the vocal cords don’t make noise, but I could see her screaming.
My mom and dear friend knew what kind of comfort I needed – they just held me and murmured words of consolation while I tried in vain to keep it together. My mother-in-law was not so in tune with what I needed – she wanted to touch her, and exclaim over her, and it was all just too much for me. I was completely helpless and broken. I had my husband make everyone leave, and then I left, too. I left my silently screaming baby in the care of total strangers, Band. At that moment, I was certain that the nurses could do more for her than I could. Now, when I look back, I am unable to forgive myself for leaving her.
That night turned out to be the beginning of a long journey. She had 2 more surgeries and lots more testing; we found out that she has a genetic anomaly that seemed to be the cause of her birth defects. She was 9 weeks old when we were finally allowed to take her home – just a few days after my first Mother’s Day.
My daughter is now almost 3 years old. She has very low muscle tone and is still quite delayed, and she is a beautiful, happy, easygoing little girl. She wears her battle scars with no complaint, and despite my failings, she loves me completely.
Guys, here’s the thing. I’m tired. Not like “I might grab a nap” tired. More like “I would like to lay down, and become one with the ground and let flowers sprout out of me” tired.
I have to admit that I’m a fighter. I’m a single female with a house, yard, full time job, two dogs, a cat, some fish, a couple hobbies, anxiety, depression, and an autoimmune disorder.
The bit that gets me is that part of my job is helping piece together information on death investigations. There is nothing more soul sucking than a steady stream of autopsy reports, except for maybe watching the slow demise of another human being. That’s eight hours of my day. I love my job. I feel committed to it, and we do good work. It’s just so hard.
When I come home, I have lovely beautiful friends who need me. They need me to support them, and have their backs. They have problems, and I feel like I should help, but I’m tapped out. I’m dry and crumbling. I want so badly to help, but my well is dry.
I don’t know what to do anymore. I don’t have anyone to tell.
I always thought that PTSD was something soldiers developed – I was naïve; had no idea anyone could develop Post-Traumatic Stress Disorder. After my teenage son began to get into trouble, I assumed we’d become another statistic – a family with an out-of-control teen.
After we started family counseling, my therapist suggested that I try private therapy. About a week into it, I was diagnosed with PTSD. The therapist said were several things that led to PTSD.
PTSD, or Post-Traumatic Stress Disorder, can occur when something horrible or traumatic has happened in. It causes stress every time you encounter a situation is similar to the previously-experienced traumatic events.
I’ve had a few types of traumatic events. I had a rocky relationship with my father growing up and then his death was both very sudden and very traumatic. An abusive relationship with my ex. I’ve experienced abuse from my son. Lastly, I was bullied by a girl from second grade all the way through high school.
My reactions to everyday situations can be more intense than they need to be – but whenever I am in a stressful or threatening situation, I relive past experiences. It’s hell, reliving the same horrible day over and over.
Once, when I saw my grade school bully in the grocery store, while I was there with my kids and we were checking out. The sound drained out of the store. My heart began to race. Blood pumped in my ears. My face got hot. As soon as I was able, I grabbed my kids and ran for the car. I must’ve driven break-necking speeds home, but I don’t remember getting there.
I had a panic attack after seeing this woman! We live in a small town and the odds of running into her are probably higher than in other areas, but I never see her. When I did, I hit fight or flight mode, and flew! That was six years ago.
Since I began therapy, I’ve seen her again. My daughters were with me, and this time I made sure to make eye contact with her as I turned to my daughters and said, “Girls, let’s go check out. I think we’ve got all we need now!” I turned and went to check out. As we left I felt so proud of myself for facing her, and not fleeing like a chicken facing slaughter!
Thanks to the ways she traumatized me, I always tell my kids, “Don’t take anyone’s crap at school!” Recently my daughter was getting harassed by a staff member at her middle school. I contacted the principal and reported her. This woman has not bothered my daughter since I reported her; threatened to file a sexual harassment suit against the school.
Since starting therapy, I stand up more than I used to. Despite all the reasons my therapist thought that I was traumatized, I think the bully and my father’s sudden death were the two that really affected me.
I was a victim of domestic abuse, but I came to terms with it, and took a stand. I left my then-husband and married the man responsible for making me feel like I was worth more. I call him my White Knight because I was considering suicide when we met – he saved me.
My son and I have resolved many of our issues and are working on our relationship; things are getting better.
See, I was blamed for him dying. He died from cancer 14 years ago and afterward, I was told that being around stressed him out – caused his cancer to return after it had been in remission.
Being blamed for his death is a hard thing to overcome. But this year, I was able to make it past his birthday and the anniversary of his death (exactly a month apart) without being a total mess!
To all those out there who have been bullied, abused, or lost a loved one, don’t assume you are strong enough to deal with it on your own.
PTSD snuck up and took over my life. I’d been miserable for years because I didn’t know what I was trying to cope with on my own. I suffered for years without understanding why, until I didn’t want to live any more.
Now, I cannot imagine having missed one day of my kids lives. Good or bad, I want to be there for it all. When they graduate from high school, when they get married, go off to college, when they start their own families. I want to be there, protect them from the problems I had. To tell them, “You’re better than this!” Or smile for them after they avoid bad situations entirely!
Don’t hesitate to get help for PTSD. It really does make a difference.
I never wanted to go to therapy every week, but I am, and I am doing much better. My therapist told me last week that he thinks I am nearly ready to be done. I think that’s a remarkable thing to hear – I am better, I can do it.
My therapist told me recently that I’m a remarkable person for dealing with what I’ve experienced, and still managing to smile. I told him that despite any issues I’ve had, I have great kids and a loving husband.
Fortunately, my daughter Sam, who has ben recently diagnosed with Triple Negative Breast Cancer, has medical insurance through her employer.
As long as she can keep her job during all of her treatment, it covers a fair amount of some of her costs. At least after her catastrophic cap was met for the year (didn’t take too long to reach it).
We all consider the deductibles and copays, and prescription copays in our lives, but be sure to check your policy on investigative drugs. Medical trials. Travel and time off work. Did you know that many insurances do not cover care if the “Standard of Care” doesn’t work? Some don’t cover food unless it’s eating out instead of buying a loaf of bread and lunch meat. Some only will cover hotel rates available to AAA members in the 1950s. Some will pay a portion of their “idea” of what your gas should cost, but only on the DATE of your appointment, even if you’ve had to drive out of state the day before or after.
Pray you never need to know the intricacies of your health insurance. Even if you mange to jump though the right hoops and snag every receipt, it would take a team of dedicated government trained legal assistants to maneuver through the paperwork. Oh, and then you can wait for over a year for any reimbursement.
Moral of the story.
EVERYONE.
Including your 20-something year old child should have some type of additional policies, because my 20-something had never been sick in her life. She had to use her insurance for the first time and we learned a very hard lesson: chronic health issues and cancer do NOT care about your age, your gender, your race, your educational level, or your income bracket. Buy that add-on policy you pray you never have to use. I mean, yeah, it’s going to crimp on picking up that name brand mayonnaise, skip a few cups of designer coffee or don’t upgrade your phone to get it, because you don’t know how important it can be.
Pray you never need it, never have to walk this walk or fight this fight while being financially sucker punched at every turn.
MD Anderson Infusion Therapy
Traveling 400 miles for treatment in Houston, TX, at MD Anderson alone adds up. Lodging is expensive. On her third trip out of state, she and I were in Houston away from home and family for several weeks straight. After that, we’ve got weekly visits for treatment and tests will go on for the foreseeable future.
Imagine you are just finishing college. You’ve invested all these years into student loans and grades and worked from the bottom up in a field helping others, so you’d be all set in your field after just one more test. You’re 20-something, but you’re invincible; you’ve never been sick.
You’ve got all your ducks in a row and have considered every possible decision.
You have spent your entire life on college student budget working your own way through school, accumulating debt, but going into a field where you are guaranteed to be a super star. Soon, you are going to kick open the doors and rock the world.
You dream of the vacations you didn’t take because you had to write papers and pay for copies and laundry, and you begin to plan them in your head. You go to sleep, dreaming of how great it’s all going to be now that you’re done. Once that last test is passed, you can consider your future. You have dreamy conversations with your parents about how one day not only will you buy a house, but this will have a little retirement cottage in the back for them, and they won’t have to worry about anything.
You tell your baby brother to keep up his grades, you bribe him and tell him to work his way to and through college, but you will be there for him if there are any hiccups along the way.
Your phone rings on a Friday afternoon as you’re in a store looking for a pink bow tie for your little brother’s prom coming up this weekend. It’s the doctor you saw, and out of nowhere, he says you have cancer and he will see you again next week. Just like that.
You’re alone. All alone.
You’re holding a bow tie for the baby brother you adore and have dressed his entire life. Your life just changed. The air is sucked out of the room, and nothing moves. You walk over to the dress shirts and begin looking for his size, but now you can’t remember for sure if he has that adorable little boy neck or of he has now grown into a lumberjack.
You call your mom to check, but instead, “I have cancer” falls out of your mouth.
Everyone’s life just changed and it all hits you.
Imagine dropping everything to live in a city far away for a month while still having to pay rent, utilities, and a car payment. Leaving your bed, pets, plants, and family behind. Being afraid of checking the mail or answering the phone: there will be bills in there with numbers that look like jackpots for the PowerBall.
Seeing things you never wanted to see. Learning a language you didn’t want to learn (Cancer Speak). Realizing you aren’t in invincible 20-something with the world at your feet, that you now must depend on the kindness of strangers when you don’t even recognize yourself in the mirror.
In the meantime, you travel every week to Texas, three states away, sleep, eat, get prescriptions, anything else you might need. Make sure you keep your job so you can keep your insurance and have a life when this is all over. Oh, also, you’re fighting cancer, so we are going to dump some of the most horrible chemical combinations known to mankind into your body and you are going to be sicker than you could ever possibly imagine.
Lucky that our family is tight. We pull together we pull through. All of my kids have sacrificed what they have and the course of their futures for family members and this is no exception. WE ARE LUCKY.
Samantha’s cancer is rare, which means she’s interesting to the scientific world, which opens us up to the option of seeing the Most Genius Medical people on the planet who study her type of Cancer. WE ARE LUCKY that we were able to get together the resources to get her to the people who could try to help her in the first 3 months.
WE ARE LUCKY that friends, family, and strangers have taken it upon themselves to raise money, cook dinner, open their homes, offer a ride, send a card, give a hug, and pray for us.
We are simply terrified, we know the first chemo regimen and treatment plan failed. We see the doctors and nurses faces when they hear her diagnosis. We realize what it means to be in trials, research programs, and testing studies. We know that we can only get the only hope kind of help out of state. We don’t feel very lucky because we know as a family that as the expenses, bills, costs pile up, the income has gone down on several fronts. Things like car repairs, broken air conditioners and power going out don’t stop because of cancer.
We don’t feel lucky because there’s interest on the credit cards and interest on the payments, and we are paddling like a herd of ducks in a hurricane just to get thru every day. We don’t feel lucky because it’s unnatural, it’s unnatural and soul-emptying to be a parent whose child has cancer. We don’t feel lucky that ”she’s grown up.”
We are her parents and she will always be our child. We don’t feel lucky that “at least she doesn’t have kids,” because she loves children and wanted to be a foster mom, because that’s who she is.
We don’t feel lucky because no one who has cancer is lucky.
I love my dogs. It’s not unusual, nor is it something not to be proud of.
I’m unable to have children, but dammit, I’m one hell of a doggie mom. I’m not all weird about it or anything – I don’t have little puppy clothing or diamond collars. I don’t buy my dogs exotic food more expensive than my own.
I do let the little dog, Bettie, sleep on the bed with me, and I totally use a weird voice when talking to her. I even call her “Pretty Girl.”
Ugh. I’m sickening.
I let the big dog, Fritz, sleep on the bed when the husband isn’t in it. He’s too large to sleep on the bed if that pesky man is there, otherwise you bet your sweet ass he’d be cuddled up next to me and Bettie.
I play fetch with Fritz – who also goes by “Mr. Foo” and “Handsome Puppy Face” – with his squeaky hedgehog toy. He’s nine and has arthritis in his hip, but he’ll run around like a puppy when you throw something for him to fetch. I swear he thinks he’s a year-old pup.
He can “sing” on command, and I’ve learned recently that he digs Motown and ’80’s music. He sits, shakes, and stands up either by hand signal or vocal commands. He even smiles! I promise. I have pictures to prove it! He’s the sweetest boy you’ll ever meet.
Bettie isn’t quite as talented in the ol’ trick department, but she makes up for it in cuteness. She’s small and shaggy and sweet. She follows me around the house wherever I go – like we’re on some sort of adventure when I’m walking to the refrigerator to grab a soda. She has some bizarre quirks like growling when a cell phone, soda can, or the like come near her tiny, little face. We’re teaching her to do some of the tricks that her “brother” does, but so far all she’s learned is how to sit and sing… sort of. Nothing cracks me up more than her high pitched squeal that is indescribable and oh-so endearing.
She’s a Mama’s Girl, even if the husband does call her “Daddy’s Little Princess” when no one is around.
For my Dose of Happy, I thought about writing about the husband (I still may), but I decided that people like me, who are/were unable to have any children, would appreciate a little levity about being a pet parent.
I love my dogs, and even though I was not able to conceive, I still have my sense of humor. I also have two furry creatures who need me.
They’ve been there with their unconditional love every time I’ve needed it. They’ve helped me when I was so sad I couldn’t breathe. They’ve listened to me sobbing and screaming. The only thing they have ever needed in return was my love. I don’t think that’s too much to ask.
