Please share this around – we are none of us alone; we are all connected. You never know who’s lives you’ll change with your words.
Funerals are not for the dead; they are for the living.
If we are to believe in the afterlife, we believe that they are already in a better place, A place where the beauty of the flowers, the churches, and the songs pale by comparison. The love they feel far outweighs the love they feel from those in attendance of their comital.
Funerals are not for the dead; they are for the living.
If we are to believe that there is no afterlife, then they are already gone. The end. Fin. They will not feel the love, appreciate the flowers, or hear the songs. Those in attendance will tell stories, feel the sweet release of a good cry, and maybe – just maybe – gain some semblance of closure. But those who have died will reap nothing.
Funerals are not for the dead; they are for the living.
Today, we gather to celebrate their contributions to the enrichment of our lives. We are there to comfort each other; to try to make sense of the loss of their light in our world. We fortify ourselves against the pain of their passing with hugs and sweet words of our loved ones, and words of our faiths.
Funerals are not for the dead; they are for the living.
My aunt passed away today and amidst the concerns for the containment of CoVID-19, we are not permitted to attend the funeral. We want everyone to be safe.
Funerals are not for the dead; they are for the living.
I love you, Aunt Netta, and I will always miss your light.
His name is John; hers is Yvonne. He is 76 and she is 74. They dated all through high school. Then they broke up and married other people, had kids and grandkids, and all was well.
Then John’s wife got cancer – ovarian or cervical – either way, doesn’t matter. He took care of her, always believing he could do more. Then she died.
John got on with his life. He was sad, but dealing.
One day, John’s son looked up Yvonne and found out she lived only 30 minutes away. She was married to someone and had kids and grandkids and even a great-grandkid.
Some time later, John’s son showed him the obituaries. Yvonne’s husband had passed. Cancer. John went to pay his respects. After all, he and Yvonne had once dated. They talked a bit and promised to keep in touch.
John and Yvonne were married two years later.
They have been married about six years now.
Two years ago, Yvonne was diagnosed with cancer, cervical or ovarian – doesn’t matter. It was the same cancer that killed John’s first wife.
John said NO!
He wanted to fight the cancer. He wouldn’t let cancer take his wife again.
John goes to every doctor appointment. He keeps track of every medication and dosage and when and how she is supposed to take it. He sat with her while she went through chemo. He shaved her head – and his – when she started to lose her hair. He isn’t letting her go without a fight.
They don’t know what the future holds, or if the cancer has spread.
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.
Since March 2019, my loving friends, you’ve prayed, danced, fallen to your knees, helped us, looked for help, cooked meals, picked up meds or groceries, bought shirts, made bracelets, hugged, cried. Laughed. Sent positive vibes. Kept us your thoughts & hearts. We are so grateful,
You’ve sorted shirts, made posters, given rides, offered beds. You’ve arranged cow, horse, and dog petting.
You’ve helped my son by being there, taking him places, or letting him hang out. I am forever grateful.
You’ve answered the late night calls.
Deciphered my illegible texts.
You’ve heard the screams, sobs, panic, and silence. You’ve hit every emoji Facebook has to offer. You’ve followed along, shared posts, sent links, looked for help, given directions, suggestions.
You’ve donated your hard earned money, time, friendship and love.
THANK YOU is not big enough.
GRATEFUL is am understatement.
We simply could not do this without support of EACH any EVERY ONE of you.
Through the multiple hospitalizations, close calls, bad news, car accidents, weekly travel to and from Houston Texas so my beautiful daughter could participate in a trial to save everyone after her diagnosed with TNBC.
Last week when we arrived for our weekly chemo on Wednesday, they told us we had to stay. A lot of tests everyday, all day.
Today we “OFFICIALLY” received the news: Dr Twong informed us that Samantha has had a reduction in the tumor they have been tracking. The tumor that grew on A&C chemo [ the red devil]. The invasive, aggressive, metaplastic cancer invading her body has reduced in size.
There could not be better news or better timing.
Yes we still have a very long road ahead, but now there is a a clearly defined road. A brightly lit road that she is paving for everyone after her.
We have three new types of doctors to meet and consult with: Surgical, Radiation, and Plastics. We are so grateful.
This Wednesday she will receive her chemo in Texas and by Thursday we’ll be making our way back to Mississippi. Next Tuesday we’ll return to Texas.
Then we won’t return until a couple days before surgery – probably the first part of October to complete pre-op testing and surgery.
That’s IF all goes well.
In mid to late November, she will start daily radiation at home, on the Mississippi gulf coast.
So my loving friends, you wonderful people. No matter what. Every single second was worth it and we could not have done it without you.
Stay with us.
There’s a lot of, “if this goes this way” type tests and procedures. Please keep doing exactly what you’ve been doing; we still desperately need you. I wanted you to know that you’ve made a major difference in our lives and the lives of every family who hears the diagnosis of Triple Negative Metastatic Breast Cancer.
If you want to submit something to us and would rather use email, please email firstname.lastname@example.org or email@example.com. Remember, your story matters too.
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.
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.
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.