November 25, 2002
We had Carol's appointment at UCSF this morning and it did not go so well. Her tumor is large and aggressive and beyond the power of any treatments. In the past, we have always weighed quality versus quantity of life in how we proceed. Her brain cancer is now so extensive that she is not receiving anything from treatment and it is wearing on her body with no benefit. Dr. Prados is stopping all treatment. We all agreed. The situation at hand (though Carol nodded in agreement) seemed to go over Carol's head. She showed little emotion.

The doctor was certain we would have Carol for Christmas but was not sure what she would be experiencing as far as deficits by then. At this time, her decline appears slow, but at some point in the near future we can expect things to pick up speed. The main areas affected will be motor function and speech due to where the bulk of the tumor lies. No one can know exactly when this will happen, though we were given a few signs to look for.

We are also calling hospice to begin their care. Though Carol is not bedridden, their services will get more extensive as things progress. Ultimately, Carol's comfort and dignity are our priority, and hospice will help us to achieve that to the end.

A Couple of Days Later
Carol, her husband Brent, her sisters, and her parents met with the hospice social worker. Carol participated with few words, a little crying, and a lot of nodding in agreement. She comforted our dad when he broke down. She started sentences which we helped her complete...one being that she wanted to be able to talk to us about her dying. The reality was that anytime one of us alluded to her dying, she changed the subject or didn't acknowledge it with any interest.

Early December 2002
Carol reluctantly started using her wheelchair to get around outside the home. Christmas shopping for the kids (ages 4, 9, and 11) motivated her to use it. At home, she could walk down the hallway to the bathroom or bedroom and living room and back. That was it. If she was up for any longer than a minute or two, she would have a seizure and collapse.

December 14, 2002
Mom and her five daughters went to Seascape (a beach resort) for the weekend to enjoy Carol. Brent called to warn everyone that we would have to help her in the shower and bathroom. We had no idea that she was requiring so much assistance. Though we saw her daily and realized she needed help rising from a sitting position and that if she was on her feet too long she would have a seizure, we had no idea that sitting and watching TV was the extent of what she could be held responsible for.

We helped Carol get up, two of us on either side of her, took her to the bathroom, helped out or stood closely by and laughed like teenagers as if we were having a ball, when really we stood by in case she had a seizure and needed our help...which happened. We brushed her teeth, walked her to and from the bedroom to the living rom, to the car, etc. Independence was gone...out the door.

By this time, Carol ate very slowly, had difficulty swallowing pills, and had very short focus. She could not articulate any thoughts and stared into space a lot. She was in diapers day and night and was dependent on the wheelchair for mobility. In spite of all of this, she went along and acted as if none of this was going on. She made many facial expressions (which became her trademark) to communicate. She still did not acknowledge that her body was failing with such limitations. We all went along and treated her as if these little inconveniences were just a fluke!

December 21, 2002
Carol insisted on going to the snow for a trip with Brent, the children, and her mom. She slept the entire four-hour drive up. She complained once that she could not feel her right leg. This was one of the very few acknowledgments of deficits she ever made. If the wheelchair couldn't be used, she would have had to be carried, as she was no longer able to walk.

December 22, 2002
Carol had to be fed because she could not focus to feed herself. They wheeled her to the snow and she watched her kids with little reaction. Her diaper would leak, and with every indignity she would experience, she would stare her caregiver in the eye and make a facial expression as if to say "I'm sorry...thank you."

December 23, 2002
Carol woke up about 8:00 a.m. and threw up phlegm. About noon, the family began the four-hour journey home and she asked for a sandwich. She had to be constantly reminded to take a bite or she would just sit there holding it.

Carol woke up about 3:00 p.m., projectile vomiting in the car. She vomited every drop of fluid intake and then some. Once the family was home, she remained in bed, vomiting most of the evening with what we believed was the stomach flu. By 1:15 a.m., Brent was concerned that this was more than the stomach flu. I rushed over to see for myself. I was back home at 3:45 a.m. The entire time I was there, she was sleeping peacefully. Two minutes after I left, she vomited again. We called hospice. They told us to start the morphine and give her a suppository to control the vomiting. We still tried to hydrate her, but she never kept any of it down. The throwing-up process was so painful to her, as she was somewhat immobile. We had to lift and turn her to throw up, and she was in obvious extreme discomfort in the jostling.

December 24, 2002
Hospice arrived in the early morning, did an evaluation, and advised that Carol had taken a significant decline since they last visited on December 20th. This was not the stomach flu, although, coincidentally, others in the family were coming down with it.

The nurse ordered a hospital bed and called the doctor. They took Carol off her antiseizure meds and Decadron. She hadn't kept any of them down in the last few days. She was now put on morphine and Ativan for comfort, pain, and anxiety. While the nurse was helping Carol vomit into a bucket, Carol had her first grand mal seizure. The nurse gave her an Ativan shot, and Carol slept the day and night away. We figured she was in a coma and said our goodbyes. We went home and got ready to go to our Christmas Eve celebration at Mom's. We came back about 6:30 p.m. before going to our mom's and checked on Carol and her family. Carol continued sleeping, and we weren't sure she'd make it through the night, according to hospice. We came back about 10:30 p.m., and she continued sleeping but could occasionally open her eyes and half-smile or squeeze a hand. We realized that her right side was now paralyzed; she could not move her right leg or arm. She was now unable to talk.

Her blood pressure was 169/86, and her pulse was 112.

December 25, 2002
Carol slipped into a semi-coma yesterday afternoon. She had entered the final stages of her journey, and hospice did not expect her to last the week. She was unresponsive but did open her eyes every now and again and even squeeze a hand here and there. She could no longer support her head. A hospital bed arrived today, and she now appeared comfortable. She was now only on morphine and Ativan to keep her comfortable as her body slowly shut down. We had all said goodbye and spent much of the day and night with her. We tried to make Christmas Eve as normal as possible for her children, but as quickly as we got through presents, they were ready to go back home. Carol was surrounded by an incredible amount of love.

December 26, 2002
Today Carol was a little more lucid. She had been squeezing hands and nodding more frequently and was even talking a little early this morning. We hovered over her like hawks. This morning, her daughter asked her if she was hot and Carol said, "I am so sick of people asking me if I'm hot or cold." Other than that, she said a few "I love you"'s!! She gave many, many smiles expressing love and appreciation. And a lot of kisses too!

That Evening
Carol was sleeping a lot more. Hospice had provided a catheter to eliminate diapers and rash.

December 27, 2002
We were using a sponge to clean Carol's mouth and giving a syringe of water about every four hours. Hospice noted right-side weakness and dysphagia. Her blood pressure was 112/82. Her temperature was 99.7 degrees, and the urine in her bag was amber-colored.

December 28, 2002
Carol was slowly slipping into a coma today. We believed she had lost her vision but could still hear us. She occasionally responded with an attempted smile, eyebrow raising, or squeeze of the hand. She now had a fever, which told us that her time was very limited. This was Day 6 since her last meal and real fluid intake. She appeared very comfortable and at peace. Yesterday, when anyone mentioned their hope for her getting better, she would hold her religious medallion on her neck as if to tell us that she was in God's hands.

Her blood pressure was not strong enough to be taken, her pulse was 152, and her temperature was 102 degrees.

December 29, 2002
Carol refused the water from the syringe but occasionally let us sponge her mouth. We noticed more labored breathing. Her pulse was 152, and her temperature was 101 degrees.

December 30, 2002
Carol stopped breathing five times today. We thought for sure this would be the day she would go to heaven. Father Rico came and did the Litany of the Dying, a Catholic prayer releasing her and asking that she be guided by angels quickly to heaven. We again said our goodbyes and told her to go in peace. As of tonight, she was still hanging on, although she had a fever and her breathing remained erratic.

A couple of cousins mentioned that we should stop talking about statistically how long a person can live in her condition, because Carol was fighting to hang on just to let us know that she will beat the odds over and over and over!!! (We had a chuckle over that one!)

Carol was still refusing liquids and now even stayed tight-lipped when we tried to clean her mouth with the sponge. Her responses to us were weaker and less frequent. Carol's blood pressure was 98, her pulse was 152, and her temp was 101.

December 31, 2002
Carol was in a coma, no longer wakeable, and her breathing was very heavy and labored. We tried breathing along with her, and it was difficult to keep her pace for more than a few breaths. Her blood pressure was 44, her palpitation was 58, and her pulse was 152. Her temp was 101.2.

January 1, 2003
Hospice was unable to hear Carol's blood pressure or palpitation. Her pulse was 160, and her temp was 104. There was a secretion buildup in her mouthl. We used a baby monitor to listen to her from the living room, and we all checked her every few minutes. At one point, I entered the room and breathed along with her for about five breaths and then she stopped breathing. I noticed a tear drop from her left eye and a bit of excretion from the left side of her mouth. She began to breathe again. I ran out and called her husband and our sisters. We all gathered around her, and within the minute, she took her last breath. When our parents and the fourth sister arrived, we joined hands around Carol and prayed together. Her passing was so bittersweet. We will miss her so much.

I cannot say enough about hospice and about the love of her husband that allowed us to let her die in her home in her room and surrounded by all of us that love her. It was a privilege to be her big sister, and it was an honor to walk by her side and hand her over to heaven.

Things We Did to Keep Carol Comfortable

• Lotion on her hands, face, and feet

• Chapstick on her lips

• Adjusted her jewelry when twisted or out of place

• Socks on her feet

• Turned the room into a spa environment, with soft lights and candles always burning

• Bathed and washed her hair with help from the home health aide

• Aware of protecting her modesty and privacy

Things We Wish We Had Done in Advance

Picked out an urn and known exactly who to call for arrangements (mortuary, etc.), religious aspects of funeral home handling and transportation of the body

Now She's Gone, A Few Thoughts...

Everyone balances hope for a miracle and reality differently. Carol never wanted to hear of, talk about, or face the reality of her disease or the prognosis. She put her faith in a miracle, with hope 'til the end. By the time she didn't have a hopeful attitude, very little of our Carol was left. We now wonder what the tradeoff would have been had we pushed a little harder (for selfish satisfaction) and had conversations about her death and wishes thereafter. On the other hand, we had her for six years with very good to great quality of life. Would pushing her into reality have changed that? We'll never know. But we are left somewhat wondering about her specific wishes on some topics of the life she left behind. We miss her terribly and never anticipated the hole left in our hearts.

Looking Back...

January 1997

Diagnosis/Biopsy/Radiation---We had great fear of the unknown. Looking back, there was still so much great quality of life left for Carol. Her memory and energy loss seemed huge at first, but eventually most of it was regained. Like taking two steps back and one forward.

February 1998

Radiation and Birth Control Pill Incompatibility---Carol was pregnant! Medical recommendation was to terminate the pregnancy, but due to moral and religious beliefs Carol kept the baby. Our personal belief is that the baby, born October 1998, gave Carol extended life due to the responsibility and joy.

July 1999

MRI showed new growth. We decided to get a second opinion at UCSF. They determined a new pathology---oligo ii. Carol refused to believe in anything short of a miracle for herself. She was determined to get through anything they tossed to her. She would beat this!

July 1999

PCV (6 rounds)---Carol did great on PCV. We prepared for hair loss and bought her a great wig but she never lost her hair. In fact, the hair she lost in two small spots on both sides of her head from radiation was filling in very nicely. She did have extreme fatigue and nausea on PCV.

February 2001

Temodar---Temodar was better than PCV in side effects. There was no nausea. She had fatigue, but it was manageable with a daily nap.

December 2001

Tamoxifen/VP16---Fatigue was still our major issue. The first couple of days of VP16, she had bad nausea. We began to notice expressive aphasia. She was still managing her duties of stay-at-home mother of three children with minimal help. She drove, and people were shocked when they learned she had a brain tumor. No visible signs of disease to those who didn't know her.

June 2002

We realized that Carol's reaction time was too slow for her to continue driving. She did not like this but agreed to stop driving for safety reasons.

July 2002

Carol had very noticeable expressive aphasia and balance and coordination problems. She had limited warning for urinating...always an emergency to get to the bathroom. Her seizures were stronger now, and with them she would lose bladder control. She spent a lot more time in bed, and we hired help with the house and kids. When the doctor gave us bad news at the appointment, Carol did not show emotion, as if her denial had dulled her senses. It was like taking eight steps back, and when Decadron kicked in, she took two or three steps forward.

August 2002

Carboplatin (8/2/22, 8/22/02, 10/3/02)---Fatigue was getting worse. She couldn't find words or complete thoughts and sentences. Had some bladder control issues. Continuous demise of motor skills. Weak, difficulty walking, severe expressive aphasia.

August 2002

Decadron brought newfound energy. Carol was more talkative, able to function far better than the past few weeks. Spent less time in bed. The bad thing was that she began to gain so much weight and she was uncomfortable with her appearance.