How was 4147.The rush to surgeryThe gynecologistHow was 4147.The rush to surgeryThe gynecologist

How I discovered the cancerOvarian cancer seldom produces any symptoms at all until the latest stages. So it was with me. I felt fine. Just before a routine physical exam in June 1994 at the age of fifty, I noticed a lump in my lower abdomen. My family practice physician immediately scheduled a CAT scan saying this could be just fibroids or it could be something else. He referred me to a gynecologist who would take care of everything and could refer me for any chemotherapy. The C word was not uttered, but that mention of chemotherapy alerted me.The first thing I did was to go to the libraryThere were many books on women’s health and on cancer. From my reading, I knew that what I had could be any number of things: fibroids, cyst, uterine, ovarian or pancreatic cancer. I was hoping for the best at my appointment with the gynecologist. What I was told was not the best; it was almost the worst. The CAT scan showed a large mass and my blood test showed an elevated CA 125 level. CA 125 is a tumor marker for ovarian cancer. The normal range is 0 to 30; mine was 4147.The rush to surgeryThe gynecologist scheduled me for surgery the next day. I felt that everything was moving very quickly, but that was OK. To me this meant my condition was being taken very seriously and I was getting the best treatment; of course I wanted that thing removed immediately. Now I know that cancer is hardly ever such an emergency situation. I could have waited a little, gotten a second opinion, checked on doctors’ credentials and experience, educated myself further. I now know that the gynecologist who performed my surgery was not the best person for the job. He told me he had more experience with this kind of surgery than anyone else in that insurance-defined medical practice association. He didn’t tell me that the single most important indicator of long term survival is an initial thorough debulking surgery. He didn’t tell me that gynecologic oncologists are the specialists most highly trained and experienced to accomplish this, that they have a larger arsenal of tools and the sensibility to leave nothing of the disease behind, if humanly possible.My initial research was confusingIn the weeks following my surgery, before seeing the medical oncologist, I did further reading in medical books and Gilda Radner’s book, It’s Always Something. I learned about the NCI information line 1-800-4-CANCER. I learned about The Wellness Community. I learned the basics and I read enough to confuse me. I realized that any book in print was out of date already. I enlisted my librarian brother as my researcher. I had no idea what he was doing with his computer to get me those more recent articles from medical journals and the like. As an attorney experienced in research, I could be expected to learn to use these new tools myself, but emotionally I was not up to it.Again, I was confused about treatment options. Medical oncologists spoke of new chemotherapies, surgeons wrote about operations and radiologists touted, what else, radiation therapy. It was obvious that each saw only part of the picture. Where was the person, outside of any one of these fields, who could integrate all this and decide what was best for my situation? Was I supposed to be that person, myself?The horror movieMy sister-in-law, who works at UCLA Medical Center, dug up a ten year old training video on ovarian cancer. It followed a typical case from diagnosis through treatment and death two years later. The woman featured in the film was about my age, about my size. I saw what her tumor looked like; I watched the last stages of her treatment when she was just being kept as comfortable as possible while dying of bowel obstruction. Was this what I had to look forward to? My sister-in-law thought I should “know the truth.” Maybe so. But the movie was ten years old and that woman’s case was not like mine. It took me quite a while to comprehend that, although my tumor was larger than hers, my prognosis was quite different because my cancer was not as advanced.I take another set of ears (and a brain) with me to see the doctorBy time I saw the medical oncologist in his office (he had visited me in the hospital), I had all my questions written down. I brought one of my sons with me. This was one of the smartest things I did. It was impossible for me to hear and understand what I was told. Kevin would help me put it all together later. When a light bulb would light up in my brain and I would suddenly “get” something, Kevin gently reminded me that I had been told that very thing more than once. I began to understand what happened to some of my legal clients–how normally capable people, when faced with divorce or other litigation became helpless idiots.My cancer was Stage II-CAccording to the pathology reports, my left ovary weighed 1060 grams (2.36 pounds) the right ovary was as large as my uterus, 64 grams (2.28 ounces) and the tumors had also invaded the uterus. The poorly differentiated tumors were of mixed type: mucinous and serous. There were positive washings (distilled water introduced into the abdomen and then retrieved contained free floating cancer cells. These are the beginnings of further metastases). At least there was no spread beyond the pelvis and no ascites (abdominal fluids caused by the cancer.) My cancer was staged as II-C.The oncologist said I had a fifty-fifty chance. Of what? Of surviving two years? “Of being cured,” he said. “Being cured to live to a ripe old age and then die, after falling off a ladder.”The oncologist “talked the talk” but…My oncologist had referred to this meeting as a, “discussion of the treatment options.” He used all the current patient-centered jargon. But he didn’t discuss anything. He merely told me what my treatment would be: cytoxin and carboplatin every four weeks. It seemed a very cookie cutter approach. And from my reading, it didn’t sound very current. When I asked about Taxol, he made it sound more experimental than I knew it to be. I said I owed it to myself to get a second opinion about something this life threatening. He graciously offered to refer me to his associate. I declined. I wanted a consultation with someone not only out of his office, but from a different medical school. He was from USC. I wanted to hear from UCLA.I seek a second opinionI called 1-800-4-CANCER and that’s when I learned about gynecological oncologists. These are the gynecologists that do not deliver babies or treat infertility. The only surgery they do is cancer related. They know about both radiation and chemotherapy as they relate to reproductive cancers.I met with a team of doctors at UCLA Rhonda Flemming Center. I was very impressed with them and would have agreed to be treated there. Except my HMO wouldn’t cover it. So I went back to my medical oncologist with my demand for the same treatment recommended at UCLA: Taxol and cis-platin every three weeks. He said this was the cutting edge therapy and would comply. He also said he hadn’t felt it was ethical for him to suggest this treatment himself. A very puzzling statement, but I didn’t ask him to elaborate.I find The Wellness CommunityI started my chemotherapy and then visited The Wellness Community. This wonderful place, in addition to my family, has been my life support for three years. All services there are free. There are support groups for patients; separate support groups for care givers (they need to be able to bitch about us in private); lectures by doctors, nurses, dieticians; lending libraries; yoga, tai chi, fitness classes; workshops in relaxation, visualization, journaling, you name it and social events like joke fests, pot luck dinners. There are now workshops in whole grain bread making which I, as an award winning baker, put on. The Wellness Community started in Santa Monica California but there are now many throughout the US. The keystone of the whole operation is a “patient active” philosophy.My support groupI joined a support group. We were a new group of about 12 people, male and female, with a variety of cancers. We bonded instantly. This became a second family for me. My biological family is small and scattered. I have only a few close friends. The camaraderie in my group has been very important to me. We meet once a week for two hours. We laugh and cry together and rant and cuss and are generally there for one another whenever and wherever needed. During these three years, some have moved away, some have graduated, some have died. Others have joined the group and are now part of the family.I graduate from the support groupAs much as I needed the group, I was determined not to become a professional patient dependent on it forever. My chemo was completed in January of 1995, my CA 125 levels had been consistently low, my CAT scans were good, and I was leaving on an extended camping trip to Alaska in July, so I graduated myself from the group.My doctor lies to meI returned from Alaska in September and saw my oncologist. I asked for the results of my last CAT scan, done just before my trip. He said it was fine, no problem. He lied. He hadn’t even seen the report. He let another month go by before getting the report. Then he asked me to have another CAT scan. This was when I found out how bad the prior CAT scan had been. I apparently had five new tumors. If my doctor had not lied to me and tried to cover up the fact that he had dropped the ball, I would probably have understood his mistake and continued seeing him. But I lost all confidence in him.I find the right doctorTo make a long story shorter, I rejoined my support group and I was able to switch to another doctor in another provider group at a different hospital. My new doctor was a gynecological oncologist whom I had met when he lectured at The Wellness Community. Along with the new specialist came a new primary care physician who I am not that crazy about but rarely see anyway. I am not thrilled with this doctor because he opposed additional surgery. With five tumors, he would have given up. It turned out that I did not have five tumors. Four were splenosis. My body was trying to create a new spleen to replace the one I had lost twenty years earlier. (I think this is a very good sign that my immune system is trying very hard). We wouldn’t have known this without the surgery.The Chemo Sensitivity AssayDuring this surgery, samples of the tumor were sent to a special lab for a “Chemo Sensitivity Assay.” (This procedure cost me $1400 and my insurance won’t pay for it; they call it experimental.) The samples are cultured in the presence of various chemotherapy agents to see how well the agents retard the growth. This is the only way to get an individual, not merely statistical, assessment of the worst and best drugs to fight an individual cancer. Surprise! The taxol I had insisted on was not only ineffective for me, it made the cis-platin less effective in combination with it. The best drug for my cancer was Thiotepa an old one seldom used any more.For more on Chemosensitivity, see Larry Weisenthal’s Essay on Chemosensitivity TestingMy second (or third) look surgeryA second round of chemo was followed by a second look surgery (actually my third operation). I got almost a clean bill of health. Most of the biopsies were negative but there were a few cancer cells. So I had a radioactive isotope, P-32, injected into my abdomen to kill these cells on contact. Then more Thiotepa, just to be sure. I am thankful Thiotepa was quick and without the awful side effects of my earlier treatments. I barely knew I was getting chemo.Cancer free one year laterIt has been one year since my last surgery and six months since my last chemo. I have recently had to switch doctors again because my wonderful gynecological oncologist quit doing business with my HMO. He didn’t like the interference with his professional judgment. I hated to leave him but I cannot afford go outside of my HMO coverage. I am now seeing another gynecological oncologist who has worked closely with my former doctor. I am again graduating from my support group and life goes on.My change of lifeHas cancer changed my life? I am arrogant enough to want to say no. The truth is it has. I changed occupations. I am now a substitute teacher rather than a lawyer. I guess many people rethink their careers when faced with a life threatening illness. I rode an emotional roller coaster for some time. I was depressed for periods of time. I think that’s only natural. I found out that some friends can’t cope with cancer and disappear, but others are worth their weight in gold. I now have a permanent hearing loss as a result of my treatment with cis-platin. That was very hard to accept, especially when a new drug that prevents this damage was just a little too late for me.Any side order with that?Yes, I had side effects, some serious and permanent, some transitory. No one can say how serious your side effects will be. That’s because you are the only one who knows the importance of these things to you. I didn’t mind losing my hair (twice); for others, hair loss is traumatic. Nausea was very debilitating to me. I even developed anticipatory nausea. I would vomit in the car on the way to treatment. When the doctor told me my treatment would have to be postponed another week, I vomited anyway. I hated this weakness, but there it was. I cried quietly through my first CAT scan, not because it was a terrible procedure, but because I felt that I was totally under the control of others and that this was just the beginning of greater loss of control to come. One side effect of chemotherapy that I have never heard a doctor mention is short term memory loss and difficulty with concentration. Doctors don’t mention it, but most patients joke about it among themselves.I think that it is important to acknowledge these losses and grieve for them. It doesn’t matter if you know that others are in worse shape, have suffered more, have lost more. Your loss is still important to you and you must deal with it before you can move on.Coping mechanismsHere are some of the practical techniques that I used to deal with various problems. I have a small water fountain just outside my bedroom window. The sound of running water is soothing and sleep inducing. A tape or CD of similar sounds would also work. I made an anti depression music tape. On one side are depressing songs about terrible troubles (Deportees, Springhill Mine Disaster, I Am A Rock, Four Dead In Ohio, etc.) On the other side are up-lifting songs (Things Get Better, Let It Be A Dance, Hey Jude, Song For Judith, etc.) The idea is to wallow in the sadness, acknowledge it, then count your blessings and lift yourself up with the upbeat songs. When going into the hospital, I take a duffle bag with all the little things I could possibly need: fresh fruit, instant soups and oatmeal (sometimes a meal is delayed when you are really hungry,), camomile tea bags, green tea bags, books, magazines, paper and pens, a walkman and music and comedy tapes, an eye pillow (a small silk pouch filled with grain and fragrant herbs that rests over your closed eyes and soothes you to sleep.) These things allow me to maintain a greater sense of control.And travelI visited England during my first chemo treatment. Looking back, I wasn’t strong enough to fully enjoy it. But I was alive and I felt more alive. My only regret is that I couldn’t stay more than two weeks. The next summer I drove to Alaska and climbed mountains, got to within 800 miles of the North Pole and saw the midnight sun. I have continued to take shorter camping trips. This winter I will drive to Belize and visit Maya ruins. My son says this traveling appears to be the desperate activity of a dying woman. I don’t care.And now …I am leaving my support group because I am ready to do so. I no longer feel like a cancer patient. Gone are the days when even a hangnail evoked fears that it might be cancer related. I have gotten past that terrible self involvement that is a necessary part of the healing process. It is a great joy to concern myself with others again.Rosemary Grimm’s Five Year Update Since Diagnosis With Ovarian Cancer Stage IICLife After ChemoChemotherapy ended in March, 1997. Except for my quarterly checkups and semiannual CTscans, I was able to work regularly. I felt good, not high energy, but then I never was a high energy person. Intellectually, I thought I was through with this disease.The Ovarian Problems Discussion list and volunteering at the Wellness Community were still a part of my life. After all, the value of these programs lies in helping others as much as in receiving help.One nagging problem was rheumatic-like aches at night whenever it was the least bit cool or damp. Several of my cyberfriends had this same effect. None of us could logically claim it to be caused by cancer or its treatment. We were getting older and this could have been age related. My solution was to sleep warm , holding my body heat in a mummy sleeping bag or using reflective “space blankets” under my bed sheets. After about a year, these aches were gone for good, indicating to me that they were probably caused by my various treatments, not natural aging.Return to My Old SelfIt wasn?t until July, 1998 that I truly felt like my old self?a real person, not a cancer patient. It was as though a switch had been thrown and my emotions now coincided with my intellect. I continued to travel, hiking and snorkeling on the Island of Hawaii, started a satisfying hobby that began to grow into a little business. I felt great in every way. I began to ask my doctor for a hernia repair operation to do away with the embarrassing bulge that had developed at my old incision.Apparently Cancer FreeThis December, 1998 surgery was another chance for my doctor to explore for signs of cancer. None were found; all biopsies and washings were negative; not one cancer cell was found. I was on top of the world: cancer free, with a flat tummy.Then The Worm TurnedBy May, 2 months after my last post-op checkup, I was a little tired and weak, climbing stairs was almost a chore. My tumor marker “score” was 1000 and then 8000 ( >35 is normal.) I felt my liver where it shouldn?t have been. I knew one can loose a good portion of one?s liver and still be OK; I knew it is possible to direct chemo agents directly into the hepatic artery. I was preparing myself for more surgery and chemo, until I saw the Ctscan: my liver was riddled throughout with cancer nodules. This all happened amazingly quickly. Maybe you can imagine the double blow this was to me: I thought I was cured; I had been practicing saying, “I had cancer,” rather than, “I have cancer.” Now I knew I didn’t have long to live, though I certainly haven’t wanted an estimate of just how long that may be.And Now…I declined the systemic chemo that my doctor said might add a little time to my life. I vividly remembered the terrible fatigue, nausea, transfusions, bone marrow pains and all the rest that I had endured under this same regimen. It had seemed worthwhile for a cure or long remission; it seemed too high I cost for a “little more time.” I’ve known brave people who fought with every ounce of strength to the very end. One woman had said that without fighting, there was no quality to her life. These people scared me because I could see myself behaving just the same way–never knowing when to stop. I also have known brave people who died with dignity, not giving up hope, not giving up at all–just knowing when to follow the course their bodies were taking. I wanted to be like them. I considered it a blessing to have such a clear sign of immanent liver failure. Now I would concentrate on living the rest of my life as well as possible. I chose referral to hospice home care.I am very pleased with my hospice team (a doctor, nurse, social worker, and a chaplain and therapist should I need them.) They are not just emphasizing preparation for death. They are helping me live well. I have been supplied with any paraphernalia needed to keep up my camping trips, attendance at concerts and sporting events. I have a myriad of medications to help me eat comfortably and maintain weight and strength. When I do encounter pain I know I can trust them to manage it. I’m taking herbs to strengthen and repair the remaining good parts of my liver. They are respectful of my priorities.I don’t think I’ve ever been afraid of death; perhaps because I am at peace with my family and friends–no unfinished business there. I have moved in with my dear generous brother, for financial and physical reasons (fewer stairs.) Dividing up my family treasures and junk has been often pleasant, sometimes just a chore. My greatest regret is that I will never see grandchildren. If they will be anything like my wonderfully good and talented children, I know I’ve left significant gifts to the world.Thank YouLastly, I want to thank all who have written to me to ask questions, show concern, tell me their stories or offer prayers. It has meant a lot to me. Some have said they found my story inspirational. I meant it to be informative; I mean this update to be informative, whether or not you agree with my decisions.