Thank you for the kind comments on my earlier post. I am coping as best I can. Beanie keeps me busy, so that is a really good thing. But when I am alone is when the sadness hits.
Right now I mainly have feelings of anger and guilt.
Guilt because I was not able to be there with my Dad when he was initially admitted to the hospital. Beanie had the flu that week so I was so occupied with her and myself having the flu. I feel had I been there I could have made a difference.
My anger is at the doctors who were going down the path of treating him for pneumonia when in fact he had a documented reaction (rare but serious) to his new cancer oral med.
I am angry because on Nov 3 when we met my Dad oncologist (this was before my Dad started the medication) I specifically asked the Dr. if my Dad's risks were higher for the side effect of the drug given he had been battling pnuemonitis (an inflammation of lung) all summer due to radiation. The Dr said the risk was low.
My Dad was fine all Nov until past Thanksgiving. He had a PET scan the following week and there was no cancer found. The same day around Nov 27 he started the cancer oral therapy for his gene mutation.
I am angry because yesterday when was at my parent's home, I saw that my poor Dad had highlighted all his symptoms on the medication information guide which clearly says "Lung issues which may cause death!" He had highlighted the shortness of breath, chills, weigh loss, etc.
I am angry because when we went to see the PA on Dec 13 (he had symptoms for a few day) I asked her -- are you sure its not the drug causing it? I even had her go ask the oncologist if we should stop the drug or reduce the dosage. They said NO - keep taking it!
I am angry because after they took the X-ray that day, they called telling him he had pneumonia and prescribed antibiotics. They still had him continue taking the cancer drug. Why?? When they knew his lungs were compromised? I made my Dad call them the next morning to re-confirm it was not pnuemonitis and they said - its pneumonia, take antibiotics and keep taking the cancer drug!.
I am angry that they did not admit my Dad that same day, an 81 year old lung cancer patient with pneumonia----Why? Instead they had him home on antibiotics. By Sun night he could hardly breathe and was admitted on Monday. But I am convinced those 3 days could have made the difference.
And I am so angry when after 10 days in the hospital, by which time he had Acute Respiratory Distress the oncologist came to see him and tells my Mom "I did not expect this outcome" and told her "there is a small chance it may have been the medication" -- and started giving him steroids. But by then it was too late, the rest of his body was already shutting down.
I am so ANGRY and so GUILTY that had I been there those first few days I could have championed for him. I was there by Friday Dec 21, but he was in ICU and they were going on about growing cultures for bacteria and I figured they read his charts and were consulting each other and knew what the hell they were doing.
Surprise none of the bronchoscopy cultures grew. And what did they write on his death certificate - pnuemonitis!
I am so SO angry.
My Dad did not need to die - now now, not of this! If they had him on steroids on Dec 13 he would have recovered. I know it!
I think that is what I am having a hard time dealing with.
He did the right thing going to the Dr as soon as he started feeling ill and they completely mishandled it. We asked all the right questions too!!!
I recognize that even if he had come out of this situation, his future was not great with the cancer, but maybe we could have had more time with him...maybe a few more months, maybe even a year.
So, right now I am just angry and guilty - feeling I failed him and the medical community failed him.
Just writing it down makes me feel a bit more calm.
Hopefully one day I will be able to actually grieve, and not be so pissed off at the world!
Beanie is doing well. She tells me she gets sad sometimes thinking of him, so we talk and cuddle and I tell her its okay to be sad, but that its also okay to be happy, since Dada would want that. I try to stay happy around her, but we do talk about him. At night she says "I love you Dada" just as she did every single night on the phone.
Before the diagnosis, I really thought my dad would be around fir the net many years and Beanie woudl get to enjoy him. But I am so glad that she is old enough to always remember him. I have taken lots of pics with him over the years so she will have those.
I have a video of him on his 80th birthday in 2017 and about 6 voicemails on my landline which I have recorded on my cellphone. I had panicked initially thinking I did not have his voice any where. But now I do.
I like hearing it -- it makes me feel very calm.
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