Is this guilt feeling normal.

Well its been nearly 2 weeks since my mom passed away. A little background the journey for us began when she went to the hospital with back pain in Feb 2010. After an xray they noticed an 8cm mass in her lung (probaby would have been detected earlier but mom rarely went to a dr). She had a CT scan and a biopsy.

We were set up with an oncologist at the hospital who told us this type of tumor is highly treatable and with chemo he should be able to shrink it so her breathing would improve. The chemo kept getting pushed back, they sent her to rehab on 3/31/10 to get stronger. At rehab she developed pneumonia and a UTI which caused hallucinations...this sent her back down the street to the hospital on 4/19/10.

Because my sister and I are the only ones to care for her, we couldn't be with her everyday in the hospital, we were there in the afternoon and evenings. Of course by that time we had missed rounds and it was rare that any dr would give us a call back to let us know how things were going.

Once the infections were cleared up she was able to get her first chemo treatment on 4/26. This was what we were supposed to do right...this is what our oncologist said would help her breath better relieve some of her pain. Maybe she wouldn't require so much oxygen..we were doing the right thing correct? Mom told us she would try the chemo to see if it helped her. She hated being in the hospital and hated all the prodding and poking etc but the oncologist said this would help.

Mom made it through the first round of chemo with what we thought were little to no side effects. We still were having communication issues with the dr's. I started researching other oncologists and primary dr's for her and found what I thought was a great resource cancer center that worked with the hospital but also had the social workers we needed in case we had to plan for in home or assisted living (up until this point my sister and I spent every workday either calling or visiting nurses and centers with no help from the hospital social worker).

So after so much frustration I called and set up a new oncologist and primary dr for her. She went to see my mom for the first time on 4/30. She was wonderful and called both my sister and I after her visit. However at this time my moms white cell count was extremely low, she began sleeping. They were pumping her with antibiotics.

Our new oncologist told us that even if she rebounded from the low WBC and was able to do another round of chemo she would only have a couple of months with this type and size of tumor. I know I am not blaming the first oncologist but if I knew this I don't know if I would have told mom to go through with the chemo in the first place. I would have done what she wanted which was to send her home and have a nurse there for her. She agreed to try the chemo for my sister and I because we both thought it would give her some more time with us..pretty selfish.

On 5/4/10 She began having trouble swallowing and had to have any meds crushed and her liquid had to be thickened so she would not choke..she stopped eating.


On Thursday 5/6 the oncologist told us we have to make a decision. Her oxygen level was 85 even with the oxygen mask. With moms low oxygen level they could not keep her on the oncology floor she would need to go to ICU so they can intervene and do more evasive treatment such as a breathing tube. At this point mom was not eating or drinking and was sleeping all the time. She would nod her head at times to acknowledge we were there but we had no more communication. We did know that she had a DNR and didn't want a breathing tube. We started to hear that rattle as she was breathing and as much as I told myself not to google it..I knew what it was. I knew what all her latest symptoms were.

The oncologist told us she had only 2-3 days left.

That night we did it...we told mom that we were moving to pallative care. My sister and I just cried by her bedside where mom mumbled I love you and pointed her finger at us to not cry. That was the last word I heard from her. She began morphene @9pm that night. My sister spent Thursday night and I spent Friday night. She never woke except as her morphene was wearing off she would be a bit compative and reach for her oxygen mask or kick her feet.

At one point in the night she went 6 hours between morphene injections (2 more hours than usual) and I just kept thinking..she's getting better hook up the anitibiotics again..but I knew I was fooling myself.

She passed away on Saturday..exactly 2 days after we began the morphene. Why do I feel this tremendous guilt that she spent over 3 months in the hospital and never got to come home. Why did I encourage her to try the chemo?

If you have made it this far in my story..thank you, I guess I just needed to get it out. While I am overcome with grief in losing my mom, my best friend. I am also dealing with this overwhelming guilt.

Thanks for listening.

Nicol