Funerals and Illness and Families
On Tuesday of this week, I found I have a return of my lung cancer. I possibly have metastasis. I am waiting for a PET scan on Monday that will show where any cancer is in my body. The appearance of a recurrence this soon after having half of my left lung removed is ominous alone. Lung cancer is one of the fastest killing cancers there is. If it has gone to other organs; bone, brain, or liver, my days will be definitely numbered. I was scheduled for a surgery to repair a hernia that the doctor who took at half my lung caused. If the cancer is outside of my lung, this surgery will be canceled. For two months I have experienced a deep depression. Multiple medications have not helped, and the side effects were horrible. I recently increased the Lamictal I am on and seem to be better. Still, there are times I almost cry and hold back.
My brother and sister are normally pretty nice people-as long as you do not cross them or disagree with them. They still work and are caught up in their own lives. I called my brother who is a non-medical person but is a manager in a non-patient care department in the hospital. I am trying to describe my feelings of shock and go through my initial thought process when he begins to berate me for not being grateful for the last seven months since my surgery. Well, let’s see. Due to the surgery, I got a severe infection that took a month to clear up with massive doses of antibiotics. The surgeon denied I had an infection and my infectious disease doctor was left to treat it. With the infection in my raw, post-operative chest came chest pain that was not relieved by anything. Finally after the infection was gone, that stopped. I have a huge, rare hernia that occurred three days after the surgery when the physician’s assistant pulled out my chest tube. It is uncomfortable, effects my bowel, and is unsightly. It took multiple doctors and radiologists to finally diagnosis it. The second surgeon recognized the hernia immediately. Now, I may not be able to have that fixed. If it had been diagnosed correctly before now, the hernia would have it fix before now.
The surgeon’s wife, who was my first oncologist, said the bulge was nerve damage from the surgery, everything has risks, and I would just have to learn to deal with it. Well, it is not just anything. It is a hernia. I changed oncologists. She was a bitch. She also informed me radiation would have treated the lung cancer just as well as this disastrous surgery.
Now my brother further informed me what treatment I should have and got angry when I tried to verbalize my wish for quality of life. He compared me to someone else who had a small recurrence many, many years after the first episode of cancer that was cured with a new procedure. I am a nurse. I have worked with oncology and hospice patients all over the United States. I have worked with multiple oncologists. But he was going to tell me what I should do and why I should be grateful for a fucked up surgery, all the complications after the surgery, and now a return of cancer six months after surgery when I am still dealing with the complications of the surgery. Sterling. Oh, I got to hear about all his aches and pains and how he just soldiers onward. I added that the person to which he referred did not develop another lung tumor in three months the size of the original tumor. The last CT scan three months ago showed nothing.
My sister began by being supportive and asking questions that made sense. She had come up for my first surgery and was wonderful. I guess I expected the same attitude this time. She has a way of her speech becoming very measured and condescending when she is fucking with you. So, the first question was “And you are having the hernia surgery why?” So I explain why. We got through the first conversation about the recurrence. I commented to her I needed someone to just listen and not tell me what to do or what to think. Day three after I am told my cancer is most likely back she calls. I am telling her how I don’t know how to feel. That I am very angry about the recurrence so soon after the surgery and that if indeed this big spot on CT scan is cancer-and it can be pretty much nothing else-it will be life-limiting. She interrupts me mid-sentence to start in about her coworker who had Stage IV colon cancer. I lost it and was quite curt telling her lung cancer and colon cancer are not the same. Every organ system is different and stated I was tired of people trying to tell me medical information that is incorrect when I am experienced enough to know the correct information. So, she huffed up, stated she had been for me through all of this, and if I was going to be angry at everyone, she had to go. The righteousness of it was unimaginable.
Now let me preface this by saying I have been a RN for 38 years and worked every specialty out there including oncology and hospice. I have been there for my brother and sister throughout their lives and jumped in to help when needed over and over. To tell me she had been there for me throughout this just pissed me off. Like she was holding that over my head and I was not supposed to correct her or become upset with her because of that. A free ticket, so to speak. I NEVER held over her head the times I stepped up to help her-even when it cost money I did not have and helping was inconvenient. A few times it could have cost me my job. But, you know, that doesn’t count evidently.
I have just been told-in essence-that if this is a return of cancer, I will die in fairly short order. Maybe a year. Maybe two years and that is with treatment. But my family wants to act like I owe it to them to listen to them instead of them listening to me. I am so angry and so depressed and so disappointed. Why do they not see my concerns are valid and preaching about someone else’s experience is not going to help me. They have no clue about aggressiveness of a tumor or tumor markers or how my common variable immunodeficiency plays into the biological agents aimed at making one produce antibodies to kill cancer cells. Hell, my doctor doesn’t even know if I have a decent response to a flu shot for it to work!
Perhaps it is to make themselves deal with it better. I wish I gave a shit about their motivations, but I don’t. I sat and cried after the conversation with my sister when she hung up on me. She sent me a short text later telling me she didn’t need to be lectured and I would have to deal with things the best way for me. Well thanks a fucking lot for being so understanding and compassionate. I told her I would text her after I saw the oncologist. I am supposed to have surgery the day after for my hernia if the surgeon does not cancel the surgery. The surgeon is waiting to see how extensive the cancer is before she will agree to perform the surgery.
So, I end this day feeling abandoned. If I can’t listen to my siblings telling me my attitude and my knowledge is wrong, then I am an ass and not worth their time. I am focusing on my siblings’ responses to my illness instead of focusing on my future and what will be required to extend my life. You know, it is just not worth it to care about their opinions or their attitudes or deal with their temper tantrums. It is my life. My husband and I will decide what I will do for treatment and the hell with anyone else. I will have treatment until it makes my life miserable, and then I will stop. The End.