Sunday, November 23, 2008

The posting today is by far the hardest one I have done. On Thursday we met with the oncologist. As I said earlier, the news was not what we had hoped for. The cancer has spread to Mom's liver and the tumor is growing and moving rapidly. He explained that the tumor is shrinking the size of her stomach. This in turn has adversely impacted her appetite. We discussed the option of a feeding tube but her physical condition contraindicated surgery at this point. The oncologist also told us that nutrition given via the IV would only feed the cancer.

Chemotherapy, at this point, is not an option, again because of her poor physical condition. Applying the Eastern Cooperative Oncology Group scale used to determine the appropriateness for chemotherapy, Mom's rating is a 4 on a scale of 1 to 4 with 4 being the worst. The scale guages the performance status of a patient's overall function. This scale helps to predict response to treatment. Patients with poor performance status are unlikely to derive significant benefit from systemic chemotherapy. A rating of 4 indicates she is unable to care for herself and severely disabled.

Based on our conference with the oncologist, mom's wishes and family discussion, we made the tough decision to begin providing palliative care only. The goal of palliative care is to provide comfort care and pain relief only. At this time, Mom will remain in the hospital.

Her visitors Saturday were Okey, Roxie, Dodo, Bryon, Kevin, Stacey, Lacy, Erick, Andy, Ronnie, Robin, Ashley, Emily, Dylan, Gabe, Gina, Mike, Dea, Dale, Karen, Jan, and Shirley. The time together gave us another opportunity to reminisce about Mom. We tried to define THE LOOK. The definitions range from "How stupid do you think I am?; Are you really that stupid?; Did you really just do that?; Did you really just say that to me?; and I never did anything like that in my life, regardless of what you say or believe."

During the emergency department visit Tuesday morning, the physician who examined Mom came back in the room to check on her. He asked if everything was OK and did we need anything to which Mom replied, "No, we're just sitting here planning my funeral." The doctor got a look of shock on his face and look to me to see if Mom was confused or not. I said, "She's right; that's what we're doing." Looking back now, I'm thankful we had that time together. There were several things I did not know about Mom's preferences. Being able to hear them directly from her, I was able to seek clarification and not have to resolve questions on my own. There were several humorous moments; some questionable moments; and some really touching moments. When we finished there was very few questions left for the family to answer. Sadly, those we will have to answer on our own in a few days.

The hospital staff remains committed to making our time here as comfortable as possible. They have anticipated most of our needs, and have been very understanding when we have been somewhat demanding.

Yesterday, I asked for the readers to send me memorable moments with Mom. Here are two I received:

Hi Lori,
So sorry all your family and friends are seeing Carol suffer so. Pray that God will take her by the hand and no more suffering and pain.

One my best moments was when Carol and I found each other after so many years. I remember the call I made to her--Said "Claudine you better sit down, this is your cousin Mary Jo", well sure you know the story that she thought I had died. Loved all the time we had together, going to Branson was just great.

Would love to make her my coffee cake she loved so much. I have a vase that I bought for one her birthdays, as she liked grapes so much, well I was always going to take it to her. Didn't dare send it. Life is short, we're not promised tomorrow!!

So sorry all your friends and family are seeing her suffer so, know what you are going through. Just pray God will be with all of you. Taking Brandi to see her was great. You all sound like a loving family.
God bless.
Carol's cousin Mary Jo

The rest of the story is that based on that conversation, Mom discovered her maternal grandfather was still alive. She had not seen him for 40+ years and assumed that based on his age which would have been at least 100 years old, that he surely had passed on. Mary Jo shared with Mom that in fact he was alive and kicking in Tampa, Florida. Mom and I promptly bought our plane tickets and flew to see him. It was quite a reunion. We met his wife, a former ballerina from Austria who was 40 years younger than him. And Mom was right, he was 101 years old. Unfortunately, he passed away the following year.

Another friend wrote:

I read your comments on the Blog and to me they were just ‘your family’. Lori, I have told so many people about Ronnie’s funeral. Your family does not have a funeral, you have a get-together and share the good memories you have had. I love that idea, but as you say that was because your mother instilled it in you from a time in your life when you were young.

You are doing so much for her now and I know she appreciates it as she has told me on the phone when we talked each afternoon for awhile these past few weeks. One afternoon we talked for over a half hour. It was so interesting, just sharing memories.

In re-doing my office I have several bulletin boards which I put ‘family’ pictures on, BUT one is for my friends and I. I have 2 of Carol and I at different places and time. The one that brings back the most memories is one that was taken in Old St. Charles, around 2004. I had never been down there and it was so much fun and so interesting when she took me. She had been to that area before and knew the history of the town. I did not know it was the first Capital of Missouri until we visited the building where the lawmakers worked. I loved that time. I just wish we had of had more of them together.

We were to go to Branson this fall, but when she came back early from her last trip down and then did not go to Margie’s Son’s wedding, I knew she was not feeling well.
Carol’s Longtime Friend,
Lenora

Thanks to Mary Jo and Lenora for taking the time to share these memories with us. I will post more as I receive them.