Off The Pump

Wednesday February 24, 1993

Slept pretty well in spite of having a lot of pain in my shoulder and in my abdomen and left thigh. I turned off the pump for an hour and it seemed to help. I'm up at 7 to get ready to go to the doctor. I get a terrible stomach ache from my cereal. I don't feel well at all.

Dr. Semrad thinks I need 4 weeks vacation from the pump. I couldn't agree more. He disconnects me. It's great to leave the pump there. We stop for a taco. It's 12:30. We go to Woodland Hills to make a CT appointment for March 10. At home I relax and sleep off and on all day. My shoulder hurts a lot.

My stepmother died of cancer a few years ago. Her first symptom was shoulder pain. When I mentioned this to a nurse acquaintance, she said shoulder pain is often the first sign of cancer. How awful for Mom to be in such pain and to live in pain pills which upset her stomach. So glad she got to go off the "poison pump."

For those of you who follow my blog, I know it has been quite a while since my blog was published. Part of this is lack of time, but also it is emotionally painful for me to see Mom suffer, something she hid well from me when she was going through it. My mother-in-law was diagnosed with ovarian cancer a few months ago and has been through 4 months of chemotherapy. Her surgery is scheduled for May 20 to take a look to see if the cancer is gone, but from the imaging that has been done so far it appears that the chemo is working very well. Apparently, treatment using "genetic targeting" is becoming more common. The genetic makeup of the tumors is mapped and the chemo is customized to attack those particular cells. Carmen is 81 years old but in very good health. She was a nurse for many years and she knew it was important to pay attention to her symptoms. When she noticed some abdominal pain she called her doctor right away and they took good care of her with diagnostic tests and early treatment. Her cancer was caught early.

Happy Mothers Day

Thursday February 18, 1993

Frank goes to his carving class at 8:30. I go back to bed at 8:45 to watch Regis and Kathy Lee. It's a real effort to climb the stairs. finally at 11 I take my shower. I suddenly feel terrible and go back to bed. I feel sick and weak. Frank brings me some orange juice, a banana and some yogurt. I turn off the pump and begin to feel better. It's 3:00 by the time I'm downstairs. At 3:45 we go to see a movie "Cemetery Club". It's a rainy day.

Later about 8 p.m. we go to Hudson's Grill. I order chicken fried steak. I eat most of it but really don't enjoy it. I feel yucky all evening.

It's no wonder Mom is feeling awful after pumping toxic chemicals into her body for months. The fact that turning on the pump helped her feel better immediately is telling. I wonder if she could turn it off during the day, and just pump the chemicals while she is sleeping?

As I write this entry it is Mother's Day 2014. I posted this photo on Facebook today and got so many responses I decided to post the photo on my blog as well. This photo was taken in 1974 on my graduation day from college (California State University Northridge). I love this picture, and apparently many others do as well. Mother's Day is always difficult to celebrate for me since Mom passed away. She passed away a few days before Mother's Day in 1993. That was the hardest one. I know one day I will see her in heaven and that gives me comfort. I do wonder if she is looking down on me from heaven sometimes, and I hope she is still proud of me. I know she still loves me, even beyond the grave. So Mom, on this Mother's Day I thank you for being the wonderful mother you always were on this earth, for all the sacrifices you made, for all the wisdom you imparted, for teaching me about faith in God, and for being a great example of a Godly woman. You encouraged me and inspired me and gave me the desire to be more like you in so many ways. I miss you and I love you.

One More Week On The Pump

Wednesday February 10, 1993

Awake again at 5 a.m. Terrible to lay there for hours. I get up at 7 to get ready for doctor. It has been so nice not carrying the pump.

Dr. Semrad is not there today. I'm very disappointed. Dr. Latino agrees that Dr. Semrad should make the decision with me about the pump. I decide to connect it for 1 more week. I don't have an appetite for lunch but eat a little later. I'm so sleepy I sit in the chair all afternoon sleeping off and on. I don't feel so depressed today.

It's amazing how quickly she recovered when the poison was disconnected and how quickly she suffers from exhaustion and loss of appetite when it is hooked up again. No wonder she's disappointed that her doctor isn't working today. Wondering if Dr. Latino is really his name, or if she just made that up?

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.

Inoperable Tumors

Tuesday November 3, 1992

I awake at 6:28, turn off the alarm which has not gone off for 6:30 and get up, shower and get ready for Dr. Semrad. I'm ready for the inconvenience of the pump. I have shaved and washed my hair.

The traffic is terrible; we arrive at 9:10. The nurse takes me into the room about 9:25. Dr. Semrad asks how I feel. I say better but still have some throat and chest discomfort. He is concerned; looks in my throat and finds redness, swollen tonsils and puss pockets. I have no fever. He says it may be a virus. He cannot put the catheter in as it would probably get infected too. I must take an antibiotic and come back next Tuesday for my implant. I am very disappointed. I feel I'm running out of time. I feel my cancer is really growing. It is affecting my bowels now. Dr. Semrad delivers a terrible blow when he says they will have to do a colostomy if it gets too bad. I say no, you can operate! He says no, they cannot operate to remove my tumors because there are so many, not just large ones. I am stunned. I always assumed they could always go in and remove the large tumors when they became a problem. I felt like he gave me a death sentence. I wanted to cry.

If I don't get on the pump soon it will be too late. It will take some time for it to begin to work on my cancer and shrink my tumors. Every day I feel more pressure and pains . Lately, I have so little energy. I can't do much at all.

After the doctor we return to Simi. We vote, have lunch at IHOP and rent 2 movies for tonight. We go out to dinner and go to Newbury Park to meet new tenants. They don't show. Frank calls them and a police officer answers to say they are conducting a narcotics investigation. X those tenants.

This post makes me want to cry too. Mom has not had chemotherapy for almost 6 months at this point, so it's no wonder the cancer is spreading. At first she was enjoying her life like nothing was wrong, but now the spreading cancer is depleting her energy, robbing her of the activities she enjoys, including eating, and causing her abdominal pain and digestive problems. Having a colonoscopy bag would be out-of-the question for Mom who was very vain about her appearance.

I am finding it harder and harder to check in on Mom's journal, which I used to do on an almost daily basis. When her journal entries are news of pain, sadness and discouragement, it makes me feel sad too.

Update March 12, 2013 In today's New York Times the following article appeared, which specifically addresses the issue of removing all the small abdominal tumors:

"Flaws in Ovarian Cancer Care"

Study finds nonspecialists treat most women.

Most women with ovarian cancer receive inadequate care and miss out on treatments that could add a year or more to their lives, a new study has found. The results highlight what many experts say is a neglected problem: widespread, persistent flaws in the care of women with this disease, which kills 15,000 a year in the United States. About 22,000 new cases are diagnosed annually, most of them discovered at an advanced stage and needing aggressive treatment. Worldwide, there are about 200,000 new cases a year.

Cancer specialists around the country say the main reason for the poor care is that most women are treated by doctors and hospitals that see few cases of the disease and lack expertise in the complex surgery and chemotherapy that can prolong life.....What works best is meticulous, extensive surgery and aggressive chemotherapy. Ovarian cancer spreads inside the abdomen, and studies have shown that survival improved if women have surgery called debulking to remove all visible traces of the disease.

I Had My Nightgown Ready

Wednesday October 28, 1992

I'm awake from 4 a.m. Can't sleep. Worried about what is wrong with me. I get up at 7 a.m. to begin to get ready to leave at 9 for Kaiser Hollywood and Dr. Semrad.

We arrive early but the nurse calls me right away to take blood from my catheter, but she can't get any so tries a saline flush, but when she draws it back, she gets a huge blood clot. She's excited and she and another nurse agree they've never seen anything like it. They need Dr. Semrad.

Dr. Semrad decides the catheter has come out of the vein so all the medicine has been going into my lung area, which could account for my discomfort. He must pull out my catheter and tube. He will schedule me for next Tuesday to try again. He says this is only the second one he's ever seen come out. I'm relieved to know what's wrong with me. Doctor says I should feel better in 3 days. I had my nightgown in the car. I was ready for a hospital stay.

I'm disappointed that I will lose a week and have to go through the minor surgery again, plus getting used to the pump. But it's nice to have a few days off the pump to feel free again. I should have a nice weekend.

We stop and have a nice lunch at Eggs & Things. I relax all day, talk on the phone. We have a light dinner and watch TV. I needed to share what had happened, called Frank's mom and Chris. My mom called me so I had plenty of outlets.

I'm glad that Mom felt free of the pump, but I was mostly concerned that she had now gone several months without any chemo treatments.

Gary's Birthday

Monday October 26, 1992 Gary's Birthday

Not feeling well. I call Dr. Semrad. Up and dressed though. My chest still hurts. Dr. Semrad calls in a prescription for antibiotics. I lay around all day. Carol calls and we make a date to go to dinner at her house November 21.

Gary and Maria come over after they go out to dinner so we can wish Gary a Happy Birthday. Frank has bought 1/2 gallon of ice cream to celebrate. We all have some. Gary has brought me some pizza. I eat 2 for dinner. I feel bad and go to bed when they leave.

Is it my new kemo pump causing me to feel bad? I wonder.

My brother Gary is 36 years old this day. Does Mom wonder whether she will be around for his 37th?

Of Course You Can Dance!

Saturday October 24, 1992

Awake early. Can't sleep past 5:30 a.m. since our trip, but I have a hard time staying awake after 8-8:30 p.m. Hopefully I'll get back on track soon. Then it gets worse because tonight we set our clocks back one hour so tomorrow I'll awake at 4:30 a.m.

Marty and Kathy are coming to go to dinner with us tonight at 6:15 before square dancing at 8 p.m. I'm feeling fantastic today. I get alot of little jobs done around the house and still talk on the phone all day--12 people.

We'll go dancing, but I probably won't dance with this huge 5 pound 5"x11"x3" pack on my side. It would be very awkward. We'll see.

"Of course you can dance!", our friends all insist. I put the pump in front and dance all night. I have a great time! Full of energy!

Mom was always very confident in herself and didn't care much what other people thought, but carrying around the bulky pump made her feel awkward, as it would most people. I think it is so sweet that her friends encouraged her to dance anyway, and how wonderful that she was full of energy and felt great!

Orange Sherbet Pushups

Thursday October 22, 1992

Didn't sleep very well, worrying about the pump laying next to me, about getting tangled in the tube or pulling it out. At 6 a.m. I am vomiting even though I took the anti-nausea medicine. I feel terrible and spend the day in bed. The Compazine suppositories work a bit better. I wash my dirty hair in the kitchen sink but that's all I accomplish.

Frank brings me toast and juice and orange sherbet pushups. I love them when I'm sick. He found them at Ralph's. Bless his heart. The only market in town that has them. At 1:30 Frank takes Joseph to the dentist for a root canal. It's 5 when he gets home.

I couldn't face changing my dressings and flushing the catheter, but finally had to do it at 11 a.m. So nervous. But with Frank's help, not too bad. Thank God for Frank! One in a million.

I have always admired the fact that no matter how poorly she felt, Mom wrote in her journal every day, something I have not been able to do. I am now in my 4th year of publishing Mom's journal that she wrote in just 2. Up until now, it has been a mostly enjoyable journey, but as she approaches her last 1/2 year of life, I know there will be more pain and suffering and it will be harder and harder to me to turn the page.

I took Compazine pills this same year during my pregnancy with Derek when I was nauseous 24/7. They didn't do a thing. I can understand that it was difficult to sleep for worrying about the tube coming out of her chest, and certainly it would be very hard to change the dressing at her surgical site and flush the catheter when she is already nauseous. Frank, you certainly are one in a million! Not too many men would make a run to the only market that carries orange sherbet pushups, take care of the rental houses, take care of a sick wife, AND spend 3-1/2 hours taking Mom's grandson to the dentist. You are amazing and I love you!