A Barbecue for Gary and Maria

Tuesday June 23, 1992

Up and out to see Dr. Bienstock, my GYN surgeon. I feel good, light morning sweats, getting better, just in time for the hot weather, 100 degrees today.

Dr. Bienstock examines me, but so gently I wonder if he really does feel the new tumors. He says the one on the right is smooth, not irregular. We have a good talk about alternative treatments.

Frank and I have lunch at Good Earth and go shopping for a BBQ for Gary in Northridge. They are out and we end up going to Ventura to pick it up. It's a nice drive, but I'm so sleepy.

At home our neighbor brings us homemade peanut butter, which turns out to be our dinner. Frank assembles the BBQ.

That's great that her morning sweats are getting better. They must have been caused from suddenly going off the hormone replacement therapy when she was diagnosed with ovarian cancer. I assume she was on HRT for hot flashes and night sweats to begin with, and I can't help thinking that the HRT was the cause of her cancer. Within the last 10 years, studies showed that that HRT had a positive link to heart disease and possibly breast cancer and women were discouraged from taking hormones. I am so fortunate that I never had hot flashes or night sweats after menopause. It was a very easy transition for me, for which I am thankful.

Gary and Maria entertain frequently, and although I don't know if they are still using the BBQ that Mom and Frank gave them, I do know that Gary uses his BBQ frequently as his company lounges around the pool. I enjoyed the grilled peaches he made one night, my first and only time enjoying that dessert.

Dr. Bienstock Does Not Give Me Hope or Encouragement

Thursday April 30, 1992 The L.A. Riots Continue

Frank must work on the Marvel house today so I go alone to Woodland Hills to see Dr. Bienstock. I'm shocked when I arrive. There are 6 fire engines there. For an instant I think the madmen who set all of L.A. ablaze last night might have been here. But no, it was a gas line outside in a construction area. But the building I'm to enter has been evacuated. Soon everything is back to normal and I'm with Dr. Bienstock for an exam. He still insists a look-see operation in July is unnecessary. He claims it would weaken my immune system and studies show it's no more effective to treat the cancer when there is some than more. I can't agree with that.

He calls Dr. Swartz to discuss. I hear Dr. Swartz backing down after he said to me, "If Dr. Bienstock won't operate we'll find another doctor who will." I am hurt. Dr. Bienstock agrees to send me to Kaiser Sunset for a second opinion. I like that.

I am so upset by Dr. Bienstock and the L.A. riots I hurry home on the verge of tears. Dr. Bienstock does not give me hope or encouragement. I feel he doesn't expect me to live long.

It is rare for Mom to be emotional. She is normally strong and stoic. But on this day her emotions got the best of her. Normally she has Frank at her side for support when she meets with her doctors, but today she is alone. Then she is shocked and disturbed at the prospect that the L.A. riots have spread to Kaiser Hospital in Woodland Hills, and then that the building is evacuated for a gas leak. She finally gets to see her oncologist, but she feels betrayed by him, like he is dismissing her as a lost cause. Even her regular doctor backs down after telling her at first that they will find another surgeon who will operate. I would be crying my eyes out! Having a doctor who is on my side is so important to me. The Kaiser health care system is set up to discourage surgeries in order to minimize their costs. When I suffered a herniated disk in my lower back 4 years ago, I had to drive 2 hours to see a specialist and then I had to insist on surgery. They didn't want to do it, but at least my surgeon left the final decision up to me. I respect him for that. I am glad I had the surgery and my only regret is that I had to wait so long to get it scheduled that I had some permanent nerve damage.

It's Almost Impossible to Kill All the Cancer Without Killing The Patient

Thursday February 27, 1992

Up and off to see Dr. Bienstock, my surgeon. He examines me and says everything feels OK. He tells us it's almost impossible to kill all the cancer cells without killing the patient. The hope is that the body will naturally kill of what's left. He said I'm an average patient with ovarian cancer. I wanted to hear that I was doing better than most.

Instead of going to lunch we go home and Frank cuts a piece of plexiglass for Gary's garage door. Then we go to see how Gary is doing. He has taken 3 days vacation to work on his house. He's doing well.

We come home and take a walk with the dogs. I am awful tired after 15 minutes, but make it for 3 minutes.

The 5-year survival rate for a woman diagnosed with Stage 4 ovarian cancer was and still is only 11%. Because there are no symptoms of the disease until it has spread to other organs, most women are diagnosed at Stage 4 (advanced) cancer. Of course Mom wanted to hear that she was one of the 11%, not just average. Perhaps just a bit more encouragement from her doctor might have been a boost to her morale if not her immune system.

We Buy Lots of Square Dance Clothes

Thursday December 5, 1991

Up and ready to go to see Dr. Bienstock this morning. I feel great! I have lots of energy. I have cereal for breakfast. I've had only 2 loose stools since I got home. Everything is about back to normal.

We go out to lunch but I don't enjoy the chicken fettucine so eat only half. Then we go shopping and buy lots of square dance clothes. It's fun buying together. From there we go to Shirley & Jim's for a surprise visit. They are so happy to see us. We stay a couple of hours.

From there we go to Marlene's shop to visit with her and Gary and to check on our club outfits. Not ready. From there out for spaghetti dinner. It's great and I eat alot. From there to Home Club. We buy our Christmas tree too early--so what! Finally home at 10:30 still raring to go.

Hah! Looks like Mom is NOT taking the advice of her horoscope yesterday to take things at a snail's pace. Like I said, she has a very hard time taking it slowly.

The Doctor Doesn't Quite Know How to Treat My Cancer

Monday October 28, 1991

Dr. Bix called today. She admits she's been avoiding me. Why? Because she doesn't quite know how to treat my cancer. According to my CAT and blood test CA125 I have no cancer but Dr. Bienstock saw it. So she has no way to monitor my progress. She assumes the remaining cancers are resistant to the drugs she gave me for 6 months so she must choose another and there are so many to choose from. She is talking to other doctors and reading many articles and reports from around the world to help her make a decision. I thank her for taking time to make the best decision.

I assume Dr. Beinstock will do a laparoscopy in a few months to look for cancer. There is no other way to know. I will pray for a new test to be perfected soon that can detect ovarian cancer.

I'm feeling pretty frisky and go to watch my friends square dance tonight. I really enjoy that.

Sadly, 20 years later there is still no screening test for ovarian cancer. The CA125 blood test monitors progress in patients who already have ovarian cancer, but it has no use for healthy patients to detect early cancers, as a mammogram does for breast cancer. Even when mom's cancer was seen visually during her hysterectomy, the CA125 test falsely showed she was cancer-free. According to the website for the Cleveland Clinic, there are typically no symptoms of early ovarian cancer. In advanced stages the symptoms of are:

1. Swollen abdomen/bloating (caused by build up of fluid produced by the tumors) (mom had this)
2. Lower abdominal and leg pain
3. Sudden weight loss or gain
4. Change in bowel or bladder function
5. Nausea/indigestion
6. Swelling in the legs

The cause of this cancer is unknown but these are the known risk factors:

1. Early menopause
2. Family history of ovarian cancer
3. No pregnancies

Women who have had children or been on birth control pills are less likely to develop ovarian cancer. Since I have had 3 children and took the pill right up to menopause at the age of 51, I am hoping my risk is reduced. When I had my gallbladder removed in 2008 I had the surgeon take a look with the laparoscope and my ovaries looked fine. He even took a photo.

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.

Home At Last

Saturday October 12, 1991

It's 6 a.m. and they are waking Bea to weigh her. I can't believe it! We manage to go back to sleep til 7 a.m. I'm up getting cleaned up and ready to go home. I'm so hungry by 9 a.m. when they finally bring me bacon and eggs I can hardly eat it without throwing up. It takes awhile to eat it.

The doctor and nurses are all very impressed with how I have done. My temp is 98.6 and my blood pressure has returned to normal. My bowels are working fine and I am walking with some vigor.

I have enjoyed the 7 flower arrangements and many cards and phone calls. I have enjoyed all 4 of my roommates and most of my nurses. All in all it has been an interesting 5 days and 5 nights, but I'm eager to get into the wheelchair and head home.

Once home I go straight to the shower and wash my hair and curl it and make up my eyes and dress. Doris and Helen come over with a plant. Another arrives from Dee and Steve.

Frank and I decide where to place all the flowers and I take up residence on the blue recliner chair. Frank fixes us a nice lunch and dinner and we receive a few phone calls.

My main concern is the vaginal bleeding. The doctor did not tell me what to expect. There seems like alot and it didn't start until yesterday. Where is it coming from? Didn't he stitch me closed inside?

I still have about 100 small cancers all over inside my body cavity, but Dr. Bienstock seemed to think 3 more chemos should finish them off. The big problems is how will they know? How will they know if they return? The CAT scan didn't show small ones and the CA125 blood test didn't detect them. Will he have to open me up every 6-12 months to look for cancers? I will never feel so confident with good CAT and 125 after this. Still, I have much to be grateful for and I truly am. I am as optimistic as ever and look forward to a long and beautiful future with my wonderful Frank.

I believe I must work a little harder to achieve a complete recovery. I got lazy and cocky. I will talk to God more and visualize again. I'll use self-hypnosis or whatever I can think of. My positive thinking has never waivered and that's good, but not enough. But, at least, it seems the doctors actually believe for the first time that 3 more should do it.

While I can understand Mom's excitement at being able to shower and wash her hair after 5 days, is it really necessary to put on makeup and curl her hair? I remember when Mom visited the day I came home from the hospital after my C-section with my first child in 1981, I was in bed in my nightgown, and she insisted that I get dressed. I have to admit that I felt better about myself afterwards, so maybe she was on to something.

It is disturbing to know that the CAT scan did not show 100 or so tumors. I know PET scans show more detail, and perhaps CAT scan technology has improved in the last 20 years.

PCA Morphine Drip

Friday October 11, 1991

Slept very well from 10-7 with the help of my PCA morphine. I am up cleaning up and brushing my teeth by 7:15. Feeling pretty good. I am ready to eat but still not approved by my doctor. No doctor by 11 a.m. so my nurse calls him to ask when I can eat. He says as long as I have passed gas I can have a liquid lunch. My nurse tells a fib and he approves a liquid lunch. I promise to pass gas before lunch. I can feel the rumbling now.

I am so excited to receive my first meal of clear broth, juice and jello. It tastes wonderful and sits well with my tummy. Dr. Beinstock finally arrives about 4 p.m. He says I'm doing so well I can go home tomorrow. I thought I had to have several meals before he'd release me. He says I can have a regular dinner and breakfast tomorrow, then go home.

Bea and I slept very well tonight.

PCA morphine is the acronym for Patient Controlled Analgesia, as pictured above. Mom had a morphine drip at the end of her life and it gave her a great deal of pain relief, although she didn't like the way the morphine knocked her out. When we visited her in the hospital, she would tell us she was going to give herself some morphine, that she could still hear us in her stupor even though she would not be able to talk with us, so to please continue to visit with each other.

After 5 days in the hospital, and 4 different roommates she saw come and go, she must have been very anxious to go home after her hysterectomy.

On a personal note, my husband Ric and I are leaving for Hawaii in a few days and today I was packing some clothes for our trip. The last time we went to Hawaii, and the last time on a plane, was the trip with Mom and Frank in May 1991. Mom loved to shop and she left behind several boxes loaded with clothes. I was looking through some of those clothes today for "tropical" clothing, and recognized some of the clothes from our trip in 1991. I was overcome with grief and sadness, thinking of her, and shed a few tears. I will be thinking of her on our trip. I love you, Mom.

Lots of Flowers

Wednesday October 9, 1991

Marie goes home today. Dr. Bienstock is very pleased with my recovery. He actually seemed excited today. Yesterday they gave me Gary's donated blood. I am so hungry. The tube down my throat must stay another day so I don't know when I'll get to eat.

Yesterday Frank was here 11:30-6:00. Today he came at 1:30. I received more flowers. I have lovely flowers from Chris, Shirley, Marc & family, and Bob and Anita (Judy's folks). I am up quite awhile today and walk a few trips.

The nurses are mostly Filipino, just like L.A. Frank has called everyone. He's so good. About 6 p.m. he went home. I insisted. Four people called. I told them my throat hurt from the tube and our conversations were short.

I am assuming that Marie is her grumpy roommate. How nice that Mom now had peace and quiet. I suppose she had to be on a liquid diet for some time after her surgery, but I'm wondering what is the reason for the feeding tube? I have never had a feeding tube after any of my surgeries. I thought the IV supplied fluids and nutrients the first day, followed by a liquid diet, then a soft diet, and then normal food. The tube sounds so uncomfortable. Any doctors or nurses out there to shed some light on this?

Pre-Op Appointment Today

Friday October 4, 1991

I didn't sleep from 2:30-4:45 a.m. last night so sleep in til 9 a.m. I still don't feel rested. Maybe I'm depressed. I have my pre-op appointments today at 3 p.m. at Kaiser. I am concerned about the Lemona house but last night I couldn't stop thinking about the house we saw for Gary.

I accomplish little other than getting ready to go to Kaiser. I feel fine by then. A shower does wonders. We talk at great length with my surgeon, Dr. Bienstock. He is a 35-40 year old small Jewish man. Not bad looking, not good. His manner is polite and unrushed. I tell him I'm praying for him to have a steady, accurate hand and mind for my surgery. He tells me he has been operating 5 years and has done 4 ovarian cancer surgeries this week. When I ask how those patients are doing, he replies "Not as well as you. I removed their cancers and female organs." Dr. Bienstock says he will remove my appendix and take many biopsies while I'm on the table. We decide that morphine would probably be best as I had dry heaves with Demerol years ago.

Next we spend time with the surgery nurses going over the procedures for Monday where to check in and where they will take me and everything that will happen. We meet with the anesthesiologist. He's a nice young man but not the one who will assist on Monday. He agrees we should try morphine. Next I go to the lab to have some more blood work.

Today the doctor said I could need as much as 4 pints of blood. That's not what he said a few weeks ago. Had we known we could have asked Paul and Phil (Frank's sons) to donate. I will pray that I don't need any and that the blood Frank and Gary donated will help someone else. I signed many forms and received lots of information and booklets. We feel well informed.

We go out for Mexican food and margaritas. Later I feel ill and go to bed early.

I am completely touched. Mom is about to undergo a hysterectomy and she is losing sleep, not over worry for her health, but over the house for her son. I think in the back of her mind though she is experiencing anxiety over her surgery. She mentions being depressed and she felt ill after eating dinner.

Bob's Big Boy Restaurant

Thursday August 15, 1991

We all sleep in a bit. After breakfast we drive to Kaiser for my appointment with Dr. Bienstock. He is pleased with my progress and will schedule my surgery for early October. That means I'll be in find shape for Thanksgiving and Christmas Holidays.

After lunch at Bob's (Big Boy) we take the children home to Palmdale. We have a nice visit with Deb, then go to see Paul, Judy and Taylor. Taylor is growing so fast and is quite animated now. She coos and blows bubbles. Paul is still enthralled. Judy is still not relaxed with her.

When Mom found out she had ovarian cancer, she agreed to participate in a study to compare chemo first followed by surgery, or surgery first followed by chemo, to see which method of treatment had better success. By draw it was decided she would have chemo first. By October she would have had 6 months of chemo treatments and then would have her ovaries and uterus removed.

From the time my brother and I were little, our big treat on Saturday night was to go to Bob's Big Boy drive-in, where my parents ordered the classic Big Boy hamburger and my brother and I ordered grilled cheese sandwiches with fries. We all had cherry cokes. When my brother and I were older we actually got to go inside the restaurant. Each of us was given a Big Boy comic book where we solved puzzles and read comics of the adventures of Big Boy while waiting for our food. Bob's Big Boy Restaurant was established in 1936. The Burbank restaurant built in 1949 is the oldest remaining Bob's Big Boy Restaurant and was designated a California Point of Historical Interest in 1993. It has a table where The Beatles dined and sat while on tour in California during 1965. Movie stars like Bob Hope, Mickey Rooney, and Debbie Reynolds were regulars there in the 1950s.

CA125

Thursday May 23, 1991

Lost one pound, though I don't deserve it. I've picked up some bad habits I must break.

Frank took me to see Dr. Bienstock and Dr. Bix this morning. Dr. Bienstock examined me. Said he could feel one tumor.

Dr. Bix had good news from my blood test. CA125 which measures cancer cells was 260 when I entered hospital April 9. Today it was 24 (normal is 22). That's great! White cell (immune) count was good; nothing to worry about. I must stay out of the sun, wear sunblock and a hat! So goest Hawaiian tan I planned.

Neither doctor is pleased that I threw up after chemo. I should have started anti-nausea drug earlier and continue 2 days. Or try new drug.

Had nice lunch out. Shopped our way home. Tired but happy. Called everyone to share the good news about CA125.

CA 125 is a protein, and a tumor marker or biomarker. CA 125 is present in greater concentration in ovarian cancer cells than in other cells. CA stands for cancer antigen. Increases in CA 125 can also occur with malignant tumors of the Fallopian tubes, lining of the uterus, lung, breast, and gastrointestinal track. Benign conditions such as infections of the abdomen, chest, menstruation, pregnancy, endometriosis, benign tumors of the ovaries, and liver disease can also raise CA 125.

Although CA 125 is a useful test in monitoring women who are being treated for ovarian cancer, a single CA 125 test is not considered to be a useful screening test for cancer. Some women with ovarian cancer (up to 20%) never have elevated CA 125 levels, while most women who do have elevated CA 125 levels do not have cancer. In fact, because CA 125 can be elevated in so many non-cancerous conditions, only about 3% of women with elevated CA 125 levels have ovarian cancer. I recently attended a seminar at Kaiser Permanente regarding genetic testing for breast and ovarian cancer and was disappointed to learn that there is still no screening test available for ovarian cancer almost 20 years later. Once a woman has ovarian cancer there are no symptoms until the cancer is very advanced and probably life-threatening. That is why this type of cancer is so deadly.