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.

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?

Last Resort

Wednesday January 27, 1993

Up at 7 to the alarm. I slept well but wish I could sleep another hour. I feel pretty good again today. I prayed last night for several good days in a row, so I can go to the melodrama Thursday night and camping this weekend. I hope my prayers are answered.

At Dr. Semrad at 10:30 he says he doesn't think the kemo has done anything in the past 2 weeks and will check again in 2 weeks and may take me off the pump. He suggested we may want to try Taxol next. I said I think of that as the last resort. He pretty much agreed.

I felt down and depressed when we left. We went to Marie Callendar's for salad and then to Costco. I was so sure this kemo would be the one. Could I pray more?

Mom's last mention of chemotherapy using taxol was September 2, 1992, almost 5 months earlier. She wrote, "I'd have to go to UCLA once a week for a 2-day stay to have it injected and the cost would be thousands for us to pay." At that time Taxol was a fairly new chemotherapy drug and probably not covered by her medical insurance. Was the cost what kept her from fighting her cancer with the most aggressive treatment, or was it the possible side effects? Maybe it was the inconvenience of spending 2 days per week at UCLA. From all the traveling Mom and Frank did and the number of times each week they went out to dinner, it did not seem that money was scarce for them.

Warning Buzzer

Wednesday December 9, 1992

Bad night! The warning buzzer on the pump went off every 45 minutes from midnight on. We took turns turning it off and on again. So I was awake from 6 a.m. I got up feeling fair. We arrived at Dr. Semrad's at 9:45. I have my blood taken and take the results to the doctor. I undress. Dr. Semrad comes in with a woman doctor. They examine me. She will be my doctor for 4 weeks while Dr. Semrad has knee surgery. Dr. Semrad says my nausea is caused by the medication. He says my fluid is almost gone. He thinks he feels improvement.

We go right home. I feel ill so take a pill. Later we have lunch and go to get a larger rental car. Then do some shopping.

I take a pill and manage to eat a normal dinner. Later I have ice cream. It causes more trembling. It's terrible. Go to bed at 10 very tired.

Why was the warning buzzer going off every 45 minutes? Was the tube disconnected? What a horrible night. No wonder she was exhausted. Whatever the reason I hope she talked to the doctor about it. It sounds like he gave her some anti-nausea medication. I hope it helps.

The Woman In The Wheelchair

Wednesday December 2, 1992

Up at 7 a.m. without an alarm to get ready to go to see Dr. Semrad. We make good time and arrive at 9:45 a.m. They try one last time to draw blood from my catheter. No luck. The important thing is the kemo goes in OK. I've lost another pound. My appetite is poor most of the time.

I have seen the woman in the wheelchair several weeks now. She's about 50. Her skin is sallow, she wears a robe, her head hangs down. She looks like the end is near. I ask a nurse. Yes, she has ovarian cancer. Is that me some time down the road? I pray not.

We Christmas shop our way home. We buy alot. I'm pleased and tired. At 6 p.m. we meet with the new tenants and sign a lease.

I feel too ill to eat dinner, but about 8 p.m. do eat some soup.

I think the sight of this woman in the wheelchair had a big impact on Mom. She did not want to spend her last days in the hospital. She wanted to die at home. Even at the very end she would insist on having her hair and makeup done and would wear a pretty nightgown and robe.

Ascites

Tuesday November 24, 1992

Up early and off to see Dr. Semrad. They seem rushed today and don't even try to get blood from my catheter. I go to the lab. Hours later I see Dr. Semrad. He examines me. He can feel lots of fluid. That's why I don't feel well. I wish they would open me up and suck all the fluid out. Doctor says that will be first to go if the chemo works. We ask alot of questions. He's been putting in pumps for only 3 years. Had 8 ovarian cancer patients. Three did very well. He is unorthodox as he doesn't believe in CAT scans or CA125 blood tests. He works by feel. He says I should feel better in a week or two.

We go home and pack for our trip tomorrow.

The fluid that accumulates in the abdomen of cancer patients is called "ascites". I did a little research to see if this fluid is ever removed to give the patient some relief and found a procedure called "paracentesis" is a minimally invasive procedure using a needle to remove fluid from the abdomen. According to surgeryencyclopedia.com "There are two reasons to take fluid out of the abdomen. One is to analyze it for diagnostic purposes; the other is to relieve pressure...Risks are negligible. It is remotely possible that an organ could be punctured and bleed or that an infection could be introduced." I guess Dr. Semrad didn't think her abdominal fluid accumulation was sufficient to offer this procedure. Or maybe he didn't believe in it since he was so unorthodoz.

Joe Is 12 Today

Wednesday November 18, 1992

I'm up at 7:30 to leave for the doctor at 9:15. I have to lay down often while getting ready. I'm tired and sweating. Once at the doctor the nurse is unable to get blood out of my catheter. She tries everything like putting me in every position and putting a total of 30 cc of saline before she and finally Dr. Semrad give up and send me up to the lab to get blood out of my arm.

Doctor says the redness around the exit tube is probably from the Betadine. He says don't use it any more or the plastic bandage. Just use gauze. I get my medication and an appointment for next Tuesday so we can leave for Chris' on Wednesday. Dr. Semrad says I should start to feel better in a week or two. It's the cancer making me feel so bad.

We stop in North Hollywood for lunch at Bakers Square. We are so close to Henry and Jan's we decide to surprise them with a visit. They are so happy to see us. Henry just turned 84. Jan says he's been doing strange things and is very forgetful. He seemed fine to us. He cried when we left. He is very concerned for me.

At 6:30 we go to Gary's to give Joe his birthday present. He is 12 today. Frank has made him a game he wanted and we give him some money too.

At 7:30 we go round dancing. All our friends are sooo happy to see me. I get lots of hugs. We do OK considering we missed 2 or 3 classes. I sit down whenever I can, but do OK until 9:00. I'm tired. We leave 1/2 hour early. Dick chases us to the parking lot to give me a hug. that means alot. We go to have burgers. We're hungry. They're great!

Even though Joe and Junior were Maria's sons from a previous marriage, Mom never treated them any different than she did her biological grandson Justin. I wonder what game Frank made for Joe's birthday. I wonder if it's the game "Sequence" that he brought to our home the following week for Thanksgiving.

Most of the photos I have posted in this blog have been 20 or more years old, but as I am now within a few months of completing it, I will begin posting more current photos. The photo above of Joe with his wife Shannon and 3 beautiful girls was taken in 2012. Joe will be 33 years old this year in November 2013.

I'm not a doctor, but it sure doesn't sound good to me that the doctor could not get blood out of Mom's catheter that went directly into a blood vessel. It makes me wonder if her chemotherapy medication is getting into her bloodstream. She had a long busy day this day. It's no wonder she is tired. So sweet that two different men friends gave her a big hug and expressed their concern for her. I don't know too many men like that. My experience has been that my women friends are the huggers and criers.

Another Chest Surgery

Tuesday November 10, 1992

Up at 6:15. Didn't sleep well. Take my last great shower without my pump and tubing in my chest. We arrive at Dr. Semrad's in Hollywood at 8:50. The doctor checks my throat first and finds no more infection. It's about 11 a.m. before he finally begins my surgery. Another doctor tries to find a vein in my wrist unsuccessfully. He hurts me alot.

This time the surgery in my chest hurts alot, not like the first time. I'm glad when it's over. We get the medication and hook it up and head home.

We stop in Simi for lunch. At home I'm groggy and sleepy and spend the day and evening on the couch.

My chest hurts. Not like the first time. Lots of phone calls to see how I'm doing. Frank does all the talking.

I have had that experience with getting an IV, which is painful enough on the first attempt. But when the nurse, or in this case the doctor, can't find the vein and keeps stabbing and stabbing, that is excruciating. The worse is an IV in the top of the hand. So once Mom gets through that ordeal, she had to deal with the pain of the surgery in her chest where a tubs is inserted into the blood vessel. It just brings tears to my eyes.

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?

I'm On The Pump Now

Wednesday October 21, 1992

We are back at Kaiser Sunset at 10 a.m. I slept well. Dr. Semrad shows us the pump and how it works. It's much larger than I thought, about the size of a hardbound book, but thicker. It's heavy, 3-4 pounds. We talk. Yes, I will probably lose my hair, at least 50%, soon. I'd better shop for a wig soon. I hate them. They are hot and uncomfortable. Will probably only wear it out. I'm sad. I thought there were no side effects. Dr. Semrad says they're having much success with the pump.

More confusion. The nurse that is to instruct us on the catheter and bandage care is not available until 12:30-1 p.m. So we wait. She comes. It's so complicated and confusing. I'm glad Frank is there to help me remember. She also gives us instructions. I don't feel well. We go right home. I have some soup. I'm on the pump now.

For the most part up until now, I sense that Mom is blissfully in denial about the severity of her cancer. She has not had to curtail many activities and had few side effects. Having to now carry around a 3-4 pound pump everywhere she goes and cleaning out the catheter everyday will be a chore. Mom took alot of pride in her appearance and spent an hour fixing her hair and makeup every morning, so I am quite sure the thought of losing at least half her hair was quite disturbing. Her hair was fine, like mine, and also thin, so she didn't have much to lose. I completely understand her feelings of sadness.

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?

Fruit Cobbler

Tuesday September 8, 1992

Bad morning. I don't want to get up. After a late breakfast, I try to get cleaned up but keep having to lay down. Finally I'm dressed and makeup on and hair curled and now I feel alot better. I feel better the rest of the day as I do the wash and read all the newspapers from the past week.

We have a light lunch and light dinner. I make a fruit cobbler and eat some about 8 p.m. I feel awful in my tummy til bedtime. I must eat light and carefully and only when I'm hungry or I'm going to feel bad. I won't get my money's worth on our cruise, I'm sure.

Dr. Schwartz calls to say he'll talk to Dr. Semrad tomorrow and will call after.

Does she really need to curl her hair and put on makeup to do laundry and read all day? If it makes her feel better, I guess she does. I can relate to what she says about watching what she eats. Doctors say not to eat for 3 hours before bedtime in order to sleep better and avoid overtaxing the digestive system and retaining fat and calories overnight. I know this in my head and understand it rationally, but I continually eat sweets just before bed. The worst is chocolate! It gives me acid reflux every single time and I wake up in the middle of the night burping acid. Why do I eat chocolate when I know this is what will happen? Mom's immune system is already overtaxed while it tries to fight off an invasion of cancer cells, and adding sugar to her diet is just like adding poison. How will she resist all those desserts on the cruise ship?

CT Scan Results

Wednesday September 2, 1992

Today we went to see Dr. Schwartz and the last CAT scan. Dr. Schwartz was very sweet when he touched my hand to tell me the news was bad. The tumors had grown larger in 3 months, but not to feel discouraged, there were other treatments to try. We talked about Taxol kemo. I'd have to go to UCLA once a week for a 2-day stay to have it injected and the cost would be thousands for us to pay, another drug he didn't have much faith in and Dr. Semrad's pump system. I said I wanted him to call NCI for latest data. He wants to talk to Dr. Semrad.

I saw the tumors on the CAT and the blanket of cancer on the wall of my abdomen. Not a pretty sight! Quite disturbing. We went out to eat dinner after shopping Costco.

I searched the internet for CT images looking for one I imagined was similar to Mom's image. Just looking at those images was very disturbing to me, so I can just imagine how hard it was for Mom to see her own cancer in black and white. Even more disturbing though was to see the photographic images of the actual cancer on the female reproductive organs. Cancer is so ugly!