Losing Dad suddenly after winning his battle with cancer

I feel like I could write a novel, but I will try to keep this somewhat short. My dad was diagnosed with Stage 4 Non-Hodgkin's lymphoma. After his last 2 chemo sessions he ended up in the hospital with pneumonia and a bacterial infection. He was still on IV antibiotics I was giving him at home when he went in for his last chemo. The nurse practitioner passed a comment that she thought he still had something going on because his white blood cells were 17, but then she said his numbers have been worse and proceeded to give him his treatment. We found out he was in remission. He fought his battle and won. A week after his final chemo, he had gotten another fever. The oncologist told us to take him to the ER to have his port taken out. He had suspected it was his port that was giving him the infections both times in the hospital even though it was coming up negative. He told us once the port was out, the fevers would go away. So, off we went to the ER to get the port taken out. Because of his fever, they ran tests to see what was going on, but everything was coming back negative. A dr said he wanted to do a bronchoscopy to make sure they weren't missing something. They said they needed to sedate him for the procedure. Little did we know at the time, sedating actually meant putting him in a medically induced coma. After the procedure, he was kept on the ventilator. They kept saying they were going to wean him, but when they would take the sedation off, he would gag on the tube and get agitated and they would up the sedation again. When they upped the sedation, his blood pressure would drop and they would give him Levophed to raise his blood pressure. After a few days of this, he stopped responding. They began telling us he was in respiratory distress. His kidneys were not working as good. He was not looking good, but he had a long road of recovery ahead of him. We also found out he had a fungal infection in his lungs. They said of all the ones to get, Aspergillus was not a good one to get. Day 8 on the ventilator, they had the palliative drs talk to us about our options. We needed to decide if we wanted to have a trach done. We of course, knowing how serious he was, were still thinking that he beat the cancer, this must improve his odds. We wanted to proceed with the trach to give his body a little more time to fight everything he was going through. The dr that spoke to us, told us that a trach was not an option for him and was not an option when the drs told us the day before. They said the tricky thing about medicine is that when you try to fix one thing, sometimes you damage something else. The Levophed had damaged his kidneys and caused them to shut down which damaged other organs. He was in multiple organ failure and he would never get better. With them refusing to trach him, at this point our only options were to let him suffer until they had to remove the tube or make him comfortable. We made him comfortable. It's been 13 days since he died. Now all we have are questions and guilt. Looking back now, what if I asked for his last chemo to be delayed since he was still getting over the infection. What if I just gave his body more time to heal..maybe he'd still be here. What if we didn't let them do the bronchoscopy....could they have found the fungal infection a different way? We didn't know the effect the Levophed would have on his kidneys. What if we really pushed to have him taken off the ventilator sooner. We thought we were giving his body time to heal, not hurting him. So many what ifs. As sad as we are that we lost our dad, we are so incredibly sad for him. That he beat the cancer and passed away before he could enjoy it. That he went through everything he went through these last months for nothing. It just seems so cruel. We took him in to get his port taken out, never expecting to lose him in the meantime. I still can't believe he's gone and not really sure how to cope. People around me just say it'll get easier and life goes on, etc., but until they actually go through it, they can't begin to imagine. I don't know what I'm looking for, maybe to just talk with other people that are trying to deal with the loss of their loved ones also.

 

I'm so sorry you went through that. My story is similar as in mom seemed to be good. She was maintaining and within a week she was gone. With really no explanation. Nothing but "what if we did this? What if we didn't do this..." You will drive yourself crazy with that for a long time. I still cannot believe there are people on this earth who say "Life goes on" or "get over it" to grieving people. My mom has been gone less than two months and I can't believe the amount of people who have said these things to me. "You really need to get out of this funk, Holly!" Please try not to let them get you down. I am so sorry about your dad. If you need someone to talk to, feel free to message me. Be good to yourself.

 

Hi Holly. Thank you for your kind words. I'm very sorry to hear about your mom also. I wish there was something I could do or say to help you through this, but I know there are no words that can comfort you right now. I'm hear to listen to you anytime. Our stories sound very similar...the unexpected passing of both of them...and how we're feeling. I was always a daddy's girl. I started staying with him in March after he needed an emergency abdominal surgery..which due to "complications" during the surgery, he developed an abdominal hernia the length of the incision. So on top of the chemo, he needed a little extra help because he couldn't lift. Luckily, I'm fortunate to have a great boss who let me work from home. So I was able to stay with him 24/7. We slept in the living room on couches across from each other, binge watched tv shows, and were just together all the time. Now I'm here in his house without him. I sit on the couch and stare at his blanket and pillows on the couch across from me. I don't want to move anything. It's just like he left everything. But it's soooo hard being here without him. Everything reminds me of him. I even went to the food store the other day and had to fight back the tears because I was walking by things I would normally pick up for him. I know we just started talking and I'm ranting. It's just that nobody around me understands. Even people that mean well, until they experience the loss that we have, or of someone at least close to them, they really can't begin to imagine the hurt. My heart hurts. I feel empty, like a piece of me is missing. It only seems to be getting harder. I started going back to work, because I need to pay the bills. But I don't want to be there. I have to push myself to go in the morning. I know I'm rambling again. My heads all over the place and I just can't believe he's gone. Not that I would have been any less sad if he went through the chemo and it didn't work and he passed away, but to know he won the battle with cancer and died so sudden. That I just can't wrap my head around. I am soo soo sad for him. What he went through during chemo to beat the cancer to die after just finding out he was in remission. And the way he died. I know my dad, and I know he wouldn't have wanted to live his last few months the way he did. Sick, in pain, confined to the couch, etc. I don't mean to sound selfish, I know other people go through things like this and worse every day. I think it's cruel for them to go through too, but to watch it first hand. I thought about a bereavement group, but I have anxiety issues when having to talk in front of people. Okay, now that I probably sound like a crazy person, I'll end this. Hope to talk to you soon.

 

Yep, our stories are very similar. I lived with mom for many years as well, so I am in her house now, with all her things. Everything I look at reminds me of her. I just closed her bedroom door. The day she passed my brothers cleared out the living room where the hospital bed was. One thing I can suggest with the shopping is try the Wal Mart internet ordering and pick up. I couldn't make it through the store without crying. I was so used to buying certain things etc. It's still hard to go. With the pick up, you pull up and they load your car. Done. People go back to their lives shortly after everything is done and you're left to yourself. They seem to forget what you are left with. It's been 6 weeks for me and I've already started to hide it because I don't want to hear it. Some days you will think you're doing better then the next day, the wind is knocked out of you and you do nothing but cry. It's ok. It really sucks that your dad and my mom both went through so much. So much pain and hard work to get to a good place then something comes out of nowhere. Same exact thing happened to us and we don't know what it was. It makes you so mad! So frustrated. I got so mad that I actually called one of those law offices on the TV to see if I could sue the nursing home/rehab she was in. You will constantly think of those things. You will go through it all over and over. It's what we do. Everyday I find something new I feel guilty about with my mom. If you aren't comfortable with a group, which I wasn't, I found a grief counselor. One on one, once a week. The groups are like twice a month or once a month and I felt that wasn't enough. It does help to just go and talk to this lady once a week. I also bought a bunch of books about grieving. I literally have like 15 of them and they help too. Keeps your mind busy. Search Facebook for pages on grief support. There are A LOT. It helps to read what others are going through and what you are feeling doesn't make you crazy. Try not to be hard on yourself. If all you do one day is get up and get dressed, that's fine. It's a tough road but you aren't alone. It's a rollercoaster.