I Disconnect Myself from the Chemo Pump

Sunday February 7, 1993

Slept well until 6 a.m. After that I just rested. At 7:15 I woke Frank and we made love. It had been too long. Up at 8:15. I have orange juice. I have no appetite. Later I force some toast down.

I watch Reverend Schuller and feel somewhat better and optimistic. but I go upstairs to shower and feel so bad afterward that I fall back into bed my heart beating so hard. I try to sleep but only have terrible depressing thoughts of my funeral and what I'm wearing and how I look. I think of the hereafter but it is not pleasant.

Frank comes up. We cry. He deserves so much more than this. I decide to disconnect myself from the pump, my chemo. He agrees. I start feeling better very soon within the hours. I'm dressed, curled, hair, eye makeup and downstairs. Later I'm hungry. I eat at 4. I feel much better all evening.

So it's the chemo is what's making her feel awful, not the cancer. Look how much better she feels so quickly! I don't blame her for wanting to go off the chemo, but this is a very important decision. She is choosing death. Why is the hereafter not pleasant for her to think of I wonder? Is it just because she is so depressed, she can't focus on the glory of Heaven that awaits her? It was her strong faith at the end of her life that inspired me to turn back to Jesus, who promises eternal life if we believe in him. If I am dying, I would be calling my Christian friends to surround me and encourage me with their prayers, and to read God's promises from the Bible about eternal life.

Today is a Milestone

Today I start publishing the entries from Mom's final journal (Book 6). Coincidentally the stats on my blog also show I just passed a milestone with my blog. I have just passed 25,000 hits. Thank you to my faithful viewers for hanging in there with me on this journey. Please feel free to post comments here. It's always nice to get feedback.

Tuesday January 12, 1993

Didn't sleep well at all. Don't feel well when I get up at 7:00 but feel I must go to the driving class for the second day. By 9 I'm ready to go. I'm really tired, but make it through the 3-hour class. We go to Coco's for lunch. I enjoy fish and chips. At home I rest and try to take a nap.

Frank goes to Gary's to turn on the heat and make popcorn for Joe and Junior and 4 of their friends.

At 2 p.m. I go to Fantastic Sam's to get a perm. They say my hair is damaged and could not have a perm. They cut and conditioned it.

Not hungry for dinner, we go to Gary's with Junior's birthday present. Frank has cake and ice cream with Gary. We come home after 1-1/2 hours. I'm tired and go to bed at 9:45.

It's no wonder Mom's hair is damaged from all the chemo drugs running through her veins and hair follicles. Surprisingly she has not lost any of her hair yet.

Virus, Flu or Chemo?

Wednesday December 30, 1992

It's a real struggle to get ready to leave for the doctor at 8:45. I feel just awful. I ache all over and my chest hurts. It hurts more when I take a deep breath, even in my neck. Last night my temp was 100.1. Two doctors examine me and talk to me. My X-rays are fine. I could have a virus, flu or a reaction to the chemo. If I'm not better in a couple of days I should disconnect my chemo pump.

At home I take a pain pill and a nap. When I get up I feel so much better. I manage to be sociable downstairs with Donna & Bob. At 3:30 they leave to visit Mark (Bob's son) and family. I lay down with another pain pill.

How awful to have company when she is feeling so awful, even her best friend Donna. It must have been hard for her to put on a happy face. I know when I am sick or in pain, the last thing I want is people around me. I think that's because of the way Mom raised me. As a young girl, when I was sick she didn't make me chicken soup or pamper me. She left me alone, said confidently that I would be fine, and left for work.

Catheter Surgery Day

Tuesday October 20, 1992 Catheter Surgery Day

I don't sleep as usual when I'm apprehensive and must get up early. I'm up at 5:30. My last great shower. At 7 a.m. we're off. We make good time and arrive at 8:10. At 8:30 we can go upstairs but some confusion, Dr. Semrad forgot he was doing me today so doesn't show up until about 10 a.m. In a special examining room I'm given a small dose of something to relax me, then a couple of locals. I feel fine and talk with the doctor and nurse the whole time. They say to sponge bathe only tomorrow and come back at 10 a.m. We go to Denny's for breakfast about 1 p.m.

I don't feel like going to the meeting tonight re: decorations for New Years Eve dance.

I have one incision in my chest with stitches where the tube enters my vein, another in my breast where it comes out--no stitches, a coil of tube and catheter there.

Again, I can relate to Mom not being able to sleep the night before her procedure. Whether it's excitement or apprehension I always have a sleepless night before the event. I have learned to just automatically take a Xanax when I go to bed, and if that doesn't work, I take 2. I make sure the volume is on high on the alarm clock so that I don't sleep through it in the morning.

On September 1, 2008 I had back surgery scheduled in Sacramento which involved having nothing to eat or drink after midnight the night before, getting up early, driving 2 hours to the Sacramento Kaiser Hospital, and checking in at the waiting room area around 9 a.m. I was kept waiting until 1:30 with nothing to eat or drink and no one to keep me company as my husband had gone to work in Sacramento after dropping me off. So frustrating to be kept waiting so long! By the time my procedure was completed and I was released to go home and got something to eat it had been more than 24 hours since I had food or drink. I was happy I didn't have to spend the night in the hospital, but that 2 hour drive home was a painful one, and I felt every bump in the road.

Mom's procedure sounds pretty invasive, much more of an intrusion into her lifestyle than taking chemo medication or checking in once a week for an infusion of chemotherapy. But with the tumors growing and all her other options exhausted, this was her next step. I'll bet she hated not being able to shower.

A Fatal Decision

Wednesday September 9, 1992

I feel better today but it's still noon when I'm ready. We slept in. I'm anxious to hear from Dr. Schwartz. He finally calls about 12:30. NCI reports there are many studies going on with combination of drugs. Nothing conclusive. He has talked to Dr. Semrad. Out of 8 Dr. Senrad has treated for ovarian cancer, 3 are still in complete remission, 2 had partial results, and 3 did not respond. Dr. Schwartz feels comfortable with that choice. I tell him I will miss him. He wants me to keep in touch.

I call Dr. Senrad. He thinks it will be fine to wait til we return from our trip to start my treatment from him. He'll put the catheter in on October 20. I'm comfortable with that.

We go to Gary's at 4:30 to stay with the boys. Maria has doctor appointment at 4. When they get home we all go out to dinner to celebrate Frank's birthday (late).

I remember this day well. I was so angry with Mom. Her CT scan from August 17 shows her abdomen is riddled with cancer and she has not had chemotherapy for months. Now she's going to wait another 2 months to start chemotherapy again. I read ahead in her journal and she finally started chemo with the pump shown above on November 10. That's another 2 months to wait! What's more important, a Mediterranean cruise or her life? I am angry just thinking about it again now. Was Mom back in denial?

We Leave For Our Trip

Tuesday March 31, 1992

We're up and off to Kaiser for my chemo appointment at 10:30 a.m. I don't think they'll give it to me because my white blood count is so low. I Ask Dr. Swartz to give me a thyroid blood test. That could be causing my heating up. I'm right, 2.5 blood count is too low for chemo. I'm glad. I think I'll enjoy our trip more. I'm feeling alot better from my cold and flu.

We go right home and begin to pack for our trip. It takes most of the day. Gary calls and we meet him at his new house in Simi for a walk-through. He'll move in in a week or so. From there we leave for our trip to catch the fly-away bus in Van Nuys. We stop to see Marty and Kathy for an hour. Our plane is late taking off because they had to change planes at the last minute.

Wow, I wonder how her body managed to beat back a cold with such a low white blood cell count? Glad she's feeling better for her trip, but taking the "red eye" flight is only going to weaken her immune system. If she's anything like me, she won't be able to sleep on the plane.

I Shouldn't Feel So Good Today

Thursday March 5, 1992

My main objective today is to get all the figures together for the income tax appointment we have next week. I feel surprisingly well and energetic today, almost normal. I shouldn't feel so good today. I had chemo yesterday and last night started the pills I take for 5 days every 6 weeks. Oh well, enjoy it while it lasts.

It takes all day to do the tax prep, but it goes well and I stop often for a break. We have dinner, then start to pack the trailer for our 5-day trip to Monterey. We make some phone calls and by 11:30 we're in bed.

Frank's mom is really concerned about her brother Ricky in the hospital. Chris is feeling real good and was out to dinner tonight. I've been praying every night for both of them and others.

I was so wrong about the chemo. On yesterday's post I expected Mom to feel worse after chemo, not better. She had so much more energy after her treatment.

I Pray to God for the Strength to Endure

Friday November 1, 1991

I slept 10-1/2 hours last night. Make up time, I guess. I'm dragging all day. It takes me all day to pay the bills.

My incision is suddenly healed, but Frank insists it needs a couple more days of peroxide.

Dr. Bix calls. Chemo will be next Monday. There will be intravenous drugs once a week and some by mouth, 4 daily. Also a pill for 5 days and then wait 6 weeks. I may have hair loss, mouth sores, diarrhea, cramps, nausea and weight gain. I refuse to accept any side effects. I pray to God for the strength to endure and the power to resist any side effects. I am anxious to get started.

Laura is so excited when I tell her we are renting the house to them. We will meet tomorrow to sign the lease.

Wow, the "treatment" for cancer seems almost barbaric. Most of us try to recover from nausea, cramps and diarrhea, not try to induce it. A few days after this entry, I find out I am pregnant with Derek and am about to have these symptoms myself, 9 months of horrible nausea and vomiting that lasts 24 hours/day.

Today is Memorial Day

Tuesday October 22, 1991

Up early again to have breakfast with Bob & Donna before they leave for home. Then we are off to see my surgeon, Dr. Bienstock at 9 a.m. and Dr. Bix, my oncologist at 11 a.m. I feel fine but my blisters still look very red but dry and my infected hole in my incision has not healed up yet. I am uncertain if I want chemo to start today. I'll let the doctors decide.

Dr. Bienstock thinks I'm doing great and says OK for chemo. Dr. Bix thinks I'm doing great also but says she will schedule chemo for a later date so she can talk to Dr. Bienstock first.

We go out to lunch and then to L.A. to visit with Frank's folks. At 5:30 we meet potential tenants at Lemona house. We have a nice Chinese dinner in Granada Hills. I'm pretty tired when we finally get home about 8:30. It's been a long day but I'm no worse for wear.

Today is Memorial Day 2011 and it has been a very memorable day for me, but not in the traditional sense of remembering our servicemen, but in the sense that it has been a day filled with memories of days long gone by. I have been going through mom's scrapbook that she left behind and some very old photos. What a sentimental woman she was. In her scrapbook are matchbooks, napkins, brochures, for several places she visited as a teenager. She and my dad married in 1951 and she had a wedding shower a few weeks before the wedding. She saved every card from every friend at the shower. She saved the invitation to her senior prom in 1952, the pressed flowers from her corsage as well as Dad's. She saved the graduation announcement from San Fernando High School in 1952, which shows her GPA was 2.61. She saved the tassel from her graduation cap. She also saved every letter I ever wrote her after I moved away to Santa Rosa in 1974. Those will be the subject for another blog.

Tomorrow is Chemo #3

Monday June 10, 1991

After making whoopee we are up and off for our morning walk with the dogs. They are so delighted. We plan to walk first thing each day and hope it will help us lose the weight.

At 1:00 we're off to take care of business and later arrive at Friendship Hall in Glendale where Frank will receive another proclamation from the city in front of the Board of Directors Parks Department. Jackie is there and others wish Frank well.

We stop at a great Mexican Restaurant on the way home in Burbank. Then we stop at Gary's to visit awhile.

We rent a movie and watch it and hit the hay. Tomorrow is chemo.

Chemo #2

Tuesday May 14, 1991

Arrived at Kaiser Hospital at 10 a.m. with Frank after a good night's sleep. First they take 6 viles of blood. Then a talk with the doctor--nothing new. The chemo drugs were mixed and ready after they analyzed my kidney function from a blood sample at 11:30. First the tranquilizer that makes me drowsy. Then anti-nausea drug and chemo drugs. At 1 p.m. I am able to walk out--no wheelchair. I am hungry enough to eat tuna/noodle dish in cafeteria.

Drowsy at home. I eat taco for dinner. In bed at 7:30 I throw up every 1/2 hour from 8 to 3 a.m. Nothing helps. Awful night!

It sounds like the anti-nausea drug mom was given was not enough to last through the night. Wasn't there some medication they could have sent home with her? She must have been exhausted from throwing up every half hour, long after there was nothing left in her stomach.

Tomorrow is Chemo #2

Monday May 13, 1991

Mother is here to stay for a few days. She sleeps until 10 a.m. so I do the wash. I slept very well and woke at 7:30.

Feeling good I walk to the bank. It feels great. I have a little bit of pain in my female organs.

After I drop off mail at post office, I do my marketing. I rush to fix dinner and get to square dancing. I'm too nervous to eat from rushing.

Square dancing is great fun. We go to Hudson's Grill with the gang and I order skins. They taste real good.

Tomorrow is Chemo #2. I am full of anticipation.

It seems very ironic that mom is nervous from rushing around but facing chemo in the morning doesn't seem to make her nervous. Being full of anticipation sounds more like excitement than nervousness. I have no doubt if I was facing chemotherapy it would be with dread not anticipation and I would not sleep a wink. I admire mom so much for facing this struggle as a challenge, not as something to be dreaded. I hope some day I will be as strong and positive as she was.

First Chemo

Tuesday April 16, 1991

We arrive for my first chemo therapy at 9 a.m. I am assigned a nurse that will stay with me for the entire hour or so. Frank can stay. There are lounge chairs but I'm even more nauseous today so ask for a bed. I feel better lying down.

Yesterday they took more blood to compare with other blood tests each month in the future. First into the IV in my hand goes a tranquilizer, then an anti-nausea medication, then the chemo drugs--Cisplatin and Cyclophosphamide. The hour goes fast. I think I slept some. Frank watches me and some TV above the bed. We go home.

I am drowsy in a chair at home the rest of the day. Still not interested in food but trying to eat something. 7 Up and sherbet still tastes best.

According to the National Cancer Institute website Cysplatin is approved to be used to treat advanced ovarian cancer in patients who have already had surgery. Mom was participating in a study to determine if ovarian cancer was best treated with chemotherapy before or after surgery to remove the tumors. Mom had several large tumors and the cancer had metastasized throughout her abdomen. Her part in the study was to have chemotherapy before surgery. The chemo had alot of work to do to catch up with the damage already done.

Home Again

Saturday April 13, 1991

Awoke in my own bed today after 3 days and nights at Kaiser Hospital, Woodland Hills, where I had excellent care. I really like all four of my new doctors!

Paul, Gary, Frank's mom and aunt and uncle were there with Frank during my 90 minute exploratory surgery yesterday. Frank, Paul and Gary all hugged and cried when Dr. Beinstock came out to confirm the cancer is malignant. One tumor is orange size, one is tangerine size, and many the size of raisins scattered within my abdomen. I will have chemo first!

The first thing I remember, I am back in my room with Frank, Gary and Maria. The nurse is saying I must go home now. I am amazed. I can't even keep my eyes open. I feel my stomach. It is flat again. Praise the Lord the fluid is gone. Instead there are bandages, small incisions, 2 below my belly button. Gary and Maria followed us home. It's 11:30 p.m.

Frank is mom's second husband, Paul is his son. Gary is my younger brother and Maria is his wife. The situation sounds kind of like giving birth. You go in with a big belly, come home with a flat one, and they make you go home the next day. Even though mom was exhausted after her surgery and the ordeal in the hospital, she was committed to making an entry in her journal every single day. The set of 6 journals were a gift I had given her for Christmas the year before. I never suspected they would be used for this purpose.