My name is Bob. I've been posting here for a while now but have never posted an introduction. I have been keeping a private blog since September 20th of this year (Denise passed on July 15th) and will post the first entry. It details the events as I remember them:
I have been prompted to start this blog in response to the death of my girlfriend/partner/wife/lover (she was never happy with any of those terms) Denise. I usually say wife...because that's how it felt to me...and I suspect she felt that way too. We had 16 great years together, full of every kind of thing life can dish up...good, bad, fun, tragic...everything.
Denise developed Spindle Cell Sarcoma. She died July 15, 2011. In April of 2011, I had noticed that her appetite had fallen off. When we had breakfast or went to dinner she pushed her plate away after a bite or two. At first I thought she might trying to diet..we both were at the time. But after a week or so, it started to worry me. We discussed it and she assured me it wasn't a problem, she just felt full.
After a month, I began to seriously advise her that she needed to see a doctor. She finally relented and we made an appointment with her GP the very next day. By this time, Denise and I had concluded that it must be a gall bladder issue. That ran in her family. We discussed that possibility with the GP and she concurred. We were set up to have an ultrasound of the gall bladder.
We went to the ultrasound. I don't know what a usual amount of time is to get an ultrasound but it seemed like a long time that Denise was back there. When she came out she said, "Well, something's wrong." I asked why and she said the technician couldn't see her gall bladder and asked if she had had it removed previously. Denise said no, she had not. The tech went to discuss with one of her superiors and Denise said she was gone for quite a while. When the tech returned, Denise said she was too perky...too happy. The tech advised that Denise's GP would be getting back with the results.
The results didn't look good. The reason the gall bladder was not seen was because the liver was blocking it. Denise's liver was extended far beyond normal size. Her GP called for a biopsy of the liver and we went to Northwest hospital. The biopsy came back as cancerous.
Denise took off from work on leave and I began working from home as much as possible. Denise slept a lot of the time and I started taking over the household chores.
On the advise of the GP we met with an Oncologist at GBMC Hospital in Towson. At that time a clear understanding of the type of cancer was not known, although skin, connective tissue and pancreatic were mentioned. Denise's father had passed away from pancreatic cancer several years earlier.
I knew the diagnosis were not good but I didn't know how bad at the time. I didn't do any research either and I don't now know why. Maybe I didn't want to alarm Denise any more than she already was. Maybe I didn't want to know. But I didn't at the time.
At any rate, the Oncologist and his staff implied that we were facing a chronic condition. Something manageable. Something long-term. At least that was what I took away from the initial consultations.
The decision to try and save as much of Denise's liver, where the cancer had presented but not, we were told, from where the cancer originated, was made. A procedure to inject chemotherapy directly into one of the two halves of the liver would be done. After a month, the second half of the liver would undergo the procedure. And so it was done.
We went back home and our usual lives, although Denise was on leave and I was working from home to be with her. After a week, however, it became clear that Denise was struggling to get up the stairs to get to the bedroom. I would help her up and she would be gasping for air for 15 minutes afterwards. I said that we needed to contact the doctor right away. It was approaching Memorial Day weekend.
I woke up the next morning and Denise was not in bed. At first I wasn't too concerned but after a few minutes I thought I would try and find her. I got up and when I couldn't find her in the master bath started to go downstairs. I noticed the hallway bathroom light was on. I opened the door and I could hear Denise weakly calling for help. She was sitting in the tub. She seemed confused, dazed and couldn't remember how long she had been there. She was in such a weakened state that it took almost an hour to get her out of the tub. I almost had to call 911. Once she was out, I let her rest for a bit, then we went back to the hospital. It was Memorial Day weekend.
Denise was admitted. Her right lung was filling up with fluid. The weekend physicians contacted the Oncologist and it was determined that Denise's lung would be drained. This was done and a liter and a half of fluid was drained from her lung. After the holiday, we were told, a more permanent drain would be introduced. Denise's lungs continued to fill with fluid and were drained that weekend.
That next week, I waited in the waiting room while the drain was being attached. The surgeon took my cell phone number and advised that he would contact me when the surgery was complete. When he called, he ended the conversation by saying, "while I was in there I scoped out her lungs. There were too many cancer nodules to count." I was devastated.
The next chance I had to speak to the Oncologist I asked him to step into the hall. I told him that I needed to hear the words from him...Denise was dying, wasn't she. I advised him that no one other than me knew that Denise was as sick as she was. She had not shared anything with any of her family. I was afraid we would run out of time. I needed advice on how to go forward. His response was very non-committal, saying that he wasn't God and that he couldn't tell who would or would not die. To his credit, Denise was his patient, not me. He told her only the things she asked of him, only what she determined she could handle...a practice I understand now is common with Oncologists.
Later, I had a conversation with Denise. Her mental capacities were starting to show signs of fraying. But she was still alert and responsive most of the time. We talked about talking to her kids and family. We stated making calls.
Meanwhile, the Oncologist advised that Denise undergo full chemotherapy. That was arranged and treatment commenced. Her son came to stay with her the day after chemo completed. I had been in the hospital for days on end. I took a break. I went to a nearby trail and walked for two hours, one hour out and one hour back. My feet were covered in blisters.
When I returned to the hospital, I passed the one of the Oncologist's staff coming out of Denise's room. When I walked in, Denise was looking pale and frightened. I asked her what was wrong. She said, "They just told me I'm dying." She said her son had asked what stage of cancer his mother was at and the staff member blithely responded, "Stage 4. She's terminal." She looked at Denise and said, "You knew that, right?" Until that moment, no one had used the word terminal...it had all been "manageable, long-term, controllable." Her son and I comforted her as best we could.
Denise started to develop chest pain. The unit she was on didn't have heart monitoring equipment so she was transferred to the ICU unit. The second day she was there her younger son came to stay with her. We were advised to leave at the end of visiting hours. We went and had dinner, both of us exhausted.
I got a call from the ICU at midnight. They advised that Denise's right lung was filling with fluid and would need draining (the chest plug having been removed earlier.) I was groggy and asked if I needed to come in and was advised no. At 2am I received another call telling me that chest drain had been re-installed. Again, I said I would be right there but was advised that that was not necessary. Finally, I receive a call at 4am. Denise was on a respirator. I woke her son and we went back to the hospital.
Denise was on the respirator most of that next day. Her family, my family, friends...people floated in and out. The oncologist said that she would be removed from the respirator later in the afternoon. Her oldest son and I went to the bank and retrieved her will and living will.
Denise drifted between consciousness and unconsciousness. It was like she were standing behind a wall of fog, would step out for a while, then fade back behind the wall. She wanted a DNR. She was able to agree to that. The oncologist finally came in and said there was nothing more medically that could be done. The decision to transfer Denise to the hospice was made. She worked at a local Nursing Home which had its own hospice unit. I called and asked if Denise could come home.
She was on the hospice unit 3 days. I brought in ambient music we listened to nightly as we went to sleep and played it, I brought in my guitar and played softly while she rested. I brought our dog in, "My faithful dog," she said. All during her sickness at home, our dog had lain with her on the bed and at her feet. For that last month, the dog was with my parents.
I sat with her for 3 days and nights. Holding her hand, telling her how much I loved her, trying to comfort her, telling her it was okay for her to go. Family, friends and acquaintances stopped by on the second full day she was there. She was conscience most of the time. She was able to talk with everyone and say goodbye.
Finally, on the third day, the hospice staff advised that we try to limit the number of visitors in the room at one time. My ex-wife and daughter, who had flown in from college in Chicago, stopped by with coffee for me. My daughter visited with Denise briefly. Denise was able to open her eyes and smile at my daughter. They left and Denise's youngest sister stopped by to spell me.
I left the room and went down the hall. As I was returning, from the far end of the hall I saw her sister re-enter the room. My phone started to buzz and when I flipped it open it was her sister...."Come quick, she's going.." was what I remember. I ran down the hall and into the room. Denise's sister was on her knees by the bed. Denise was not breathing. Her sister started to explain that her husband had called and she stepped out of the room to tell him she would talk to him later. When she walked back in Denise had slipped away.
As she was explaining this...and I was standing in the whirlwind...Denise, who had not taken a breath in at least two minutes, propped up a bit on the bed, she said, in a voice stronger and clearer than it had been in days, "Yes, yes, I can see it. Yes, it's over there, okay, I'm going." She laid down and nothing more.
And she was gone.
And that is how it was, Friday, July 15, 2011 at 11:11am. My beloved wife...my best friend...the love of my life...passed away.