My evangelical Christian friend Sue, from high school, shares with me a video of “The Hurt and the Healer.” A Turkish net friend reminds me that my last name derives (we think) from the Turkish word gazi, for a kind of warrior, and I should fight this illness like the Gazi I am. And one of my young nephews, my sister tells me, has offered to give up his allowance to pay for my medical treatment.
I have just this week been diagnosed with cancer.
It is, despite the morbid title I pick for this post, in many ways a hopeful diagnosis, or at least as good a diagnosis as I could have hoped for, given that the tumor proved malignant. I am to receive a 14-15 month regimen of treatment, that includes chemotherapy by Taxol and Carboplatinum and radiation therapy, which will no doubt have its downsides, but, when I asked the doctor my odds of survival, he said that they were 75-80% in favor of my surviving. Probably it’s in my favor that the cancer proved, after all, to have started in the uterus, rather than the ovary in which it first showed on the ultrasound. Ovarian cancer tends not to show sufficiently specific symptoms until you are far gone, and has a less than 50% survival rate. My own cancer gave me dysfunctional uterine bleeding (this is the technical name – in lay terms, it was the period that refused to stop, to the point of making me anemic), and, though there are still enough benign causes for that to keep the cancer from being found in the first exam and ultrasound with my regular gynecologist, I did get flagged for enough follow up tests that the cancer was found while my odds were still in favor of living rather than dying.
To give you an idea of what the path to the oncologist’s office looks like (or, at any rate, what it looked like for me), I include the “History of Current Complaint” that I wrote to show the gynecological oncologist on my first visit (editing it only to remove the names of doctors).
History of Current Complaint, as of 3/1/2012, by Lynn Gazis
In late October, 2011, I got my period, and it didn’t go away. By late November, 2011, the period still continued, I felt fatigued, and I suspected anemia. I called the office of my regular doctor, Dr. A of Mission Internal Medical Group, and made an appointment to get a Complete Blood Count and a Comprehensive Metabolic Panel. The metabolic panel had no abnormalities other than high blood sugar because I hadn’t fasted and the expected blood sugar level was set for fasting, but the CBC confirmed that I did indeed have anemia. I was advised to make an appointment with a gynecologist ASAP, and did so.
In December, 2011, I saw Dr. B. I had my hormone levels measured, and was told that I was approaching menopause (as would be expected at 51) but was not there yet, and that my thyroid level was normal. I also got an ultrasound, and was told that it showed that I had many fibroids, 2 cm to 3.5 cm, a 6.7 cm simple cyst on my left ovary, and an endometrial lining thickened to 17.9 mm, which could be either from blood or polyps. I was prescribed Norethindrone to stop the bleeding (at an initial dose of two pills a day, raised later to three pills a day when the bleeding still wasn’t controlled), given information so that I could decide between the three options of hormone therapy, endometrial ablation, and a hysterectomy, and told to return in a few weeks for a biopsy, and get a repeat ultrasound in about six weeks.
The Norethindrone partially controlled the bleeding; while taking it, rather than bleeding continuously, I have had my period for one week a month, another week a month of light spotting, and a couple of weeks a month when I’m free of bleeding. My fatigue also lessened; at this point I need eight hours of sleep a night where before I needed seven, and once every couple of weeks or so I’ll need nine or ten hours, but I’m otherwise at normal energy (can work a full day, take a class, exercise two or three times a day, and hike and take a yoga class on weekends). However, I opted for endometrial ablation as a better long term option than hormone therapy (and less invasive than a hysterectomy).
Dr. B was unable to do the biopsy on me in January because I got nervous and froze up, so she planned to do it at the same time as the endometrial ablation, when I’d be anesthetized. At my pre-op appointment, I got another ultrasound. I was told that the cyst on my left ovary had grown (the lab report I have from Dr. B says that it is now 8.9cm, while my notes from my conversation with her in December say that it was then 6.9cm), that my endometrial lining had thickened, in spite of the Norethindrone, to about 30mm, and that I would need to lose the ovary. I also got blood drawn for an OVA-1 test as well as a CBC and a metabolic panel. A couple of days before I was to have my surgery, I got a call saying that my OVA-1 was elevated, 8.1 when normal for a pre-menopausal woman is 5 or less, and was referred to an oncologist.
Other notes: I see that my CBC still has scores outside normal range. The high platelet count may be normal for me; the blood bank loves me as a platelet donor because I have such a high platelet count. The other out of range scores are not, to the best of my knowledge, usual for me. Because I got the referral to Dr. C two days before my surgery had been scheduled, I had already had a chest X-ray and an EKG done at D Hospital as preparation for the surgery, both of which came up normal. Since I doubt my insurance wants to pay for multiple chest X-rays or EKGs in quick succession, I hope that you can get the results from D Hospital if you also need a chest X-ray and/or an EKG.
Family History of Cancer, father’s side of the family:
My father’s brother George died of cancer at about the age of 70. He had cancer that started in his intestine and metastasized to his lungs and liver. My father died of multiple myeloma at about a month short of 74. I am not aware of any other family history of cancer on my father’s side (his parents died of other causes, and none of his other three siblings had cancer, nor have any of my paternal cousins).
Family History of Cancer, mother’s side of the family:
My grandfather had prostate cancer in his late 80s. I am not aware of any other family history of cancer on my mother’s side of the family.
Family History of gynecological problems, mother’s side of the family:
My grandmother had a hysterectomy due to a tumor; the tumor proved to be benign. My sister Jessie (adopted sister, by birth a cousin on the maternal side) had a tubal pregnancy some years ago, and more recently (November 2011) had a hysterectomy and removal of both ovaries due to a growth on one ovary; that growth also proved to be benign.
The account that I wrote for Dr. C is bare bones, an attempt to convey the medical facts that might be relevant, as best I could tell as a lay person what they might be. So it leaves out some parts of what it was like living through this part: the fact that the dysfunctional uterine bleeding arrived at right about the time my mother-in-law was diagnosed with a Stage 4 glioblastoma that would soon kill her, so that it seemed I had hardly time to spare to worry about myself, the fact that my sister’s hysterectomy, coming at around the time I reached the point of seeing a doctor about the dysfunctional uterine bleeding, proved so traumatic (adhesions from previous abdominal surgeries, multiple operations) that I spent my early gynecologist visits trying to figure out how I could, if at all possible, avoid a full hysterectomy, and the fact that I hoped, as I wrote the age of each family member who had cancer, that the fact that all deaths by cancer came after the age of 70 would mean that none of them would count against me. (I made a mental list of every member of my extended family that I knew of who died before the age of 70 – the grandfather who died fighting the Axis, the aunt who died in a car accident, the stillborn baby, the Rh baby born before the days of Rhogam – and could find no early death that ought to pose a genetic risk for me.)
The oncologist explained why I had been sent to him. It was not just the fact that the ovarian cyst had grown when it should have shrunk, nor yet the OVA-1 test, but rather also some aspects of the ovarian cyst. It was septated; it had nodules; it was, in fact, a neoplasm. A neoplasm isn’t always cancer; it may be benign. At the first interview, for various reasons, particularly my age, the oncologist thought the odds were strongly in favor of its being benign. But, in case it wasn’t, in case it was even a little bit not benign (what they call an ovarian tumor of low malignant potential), I needed to lose, not just the ovary, but everything: both ovaries, the uterus, and the cervix. Having consulted my mother before the appointment, including getting her copies of all blood tests and ultrasounds (Mom’s not a doctor herself, but she has a Ph.D. in pharmacology and has taught at a medical school, so she’s the go to person in my family when it comes to interpreting what the doctor has told you), I was prepared with my answer: yes, I would accept whatever surgery the doctor recommended.
This is what the time between the appointment with the oncologist and the surgery looked like (taken from an email I sent to my mother and sister, shortly before the surgery):
This has been my week:
1) Deposit checks and pay the condo association bill.
2) Get people at work ready for my being away for three weeks.
3) Call regular gynecologist’s office and arrange to get EKG results faxed to gynecological oncologist, so I don’t need to get two EKGs in two weeks (presumably with the second one being at my expense, since I can’t imagine the insurance company would approve paying for a second EKG when they’ve already paid for a perfectly good one).
4) Spend my lunch break Wednesday driving to the gynecological oncologist’s office to sign the pre-op consent form and get the pre-op and post-op instructions.
5) Discover, at that point, that the regular gynecologist had faxed, not the EKG results, but a note that there was no EKG. I know there was an EKG; I remember having all those little stickers put on me while being told I was getting an EKG, and then being told the results were normal. Call the hospital, and try to arrange for them to fax the EKG results; they need a release to comply with HIPAA, and I need to make sure this happens without my having to drive further long distances back and forth. Arrange for appropriate faxes to be exchanged between the two offices.
6) Fail, while I’m dealing with the EKG mess, to notify Joel that the psychiatrist’s office called the home phone number (somehow they can’t be trained to call his cell phone and take me out of the loop) to remind him of the appointment. He misses the appointment, and has to drive to the office the next day to arrange another one.
7) Discover, based on my pre-op instructions, the full story on what the bowel prep entails. Not only do I have to consume only clear fluids for a day and nothing after midnight; I have to take something that will make me have diarrhea and stay home. This means I can’t open the meetinghouse and take minutes at the meeting for business as planned, and need to get substitutes for both.
8) Go to follow up dentist appointment for tooth extraction (moved up so it’s not on the same day as my surgery). Apparently the infection in the tooth caused bone loss and I’ll need a bone graft in addition to the implant. This annoys me, because I have tried so hard to take care both of my bones and of my teeth. Also it will be an additional $550, probably not covered by insurance, since dental insurance doesn’t cover implants (or mine doesn’t, I gather at this point a few insurance plans do, though most don’t).
9) Get signed up for HysterSisters to get pre-op information there. Fail to get fully signed up because I can’t receive an email from the site. Probably it’s being spam filtered, but I don’t have time to fix this right now, so for the time being I’ll go with my read only, can’t post in forums status.
10) Look for information on hormone therapy so that I’ll know what to discuss with the doctor. This proves more difficult than expected; the information on hormone therapy for healthy women who still have their reproductive systems is everywhere (based on the results of the Women’s Health Initiative study that was released in 2002, don’t do it unless you have symptoms that can’t be relieved otherwise, and take the smallest dose for the shortest time that you can), but none of this really applies to surgical menopause. Finally figure out that the terms I need to put in Highwire are “estrogen” and “oophorectomy” and get a British Medical Journal review article.
11) Look for information on post-hysterectomy exercises. This is all over the place on the web, and almost none of it gives any indication of why I should believe the writer knows what she is talking about. But I do manage to expand my list of things not to do during the first few weeks. To the “don’t drive for two weeks” and “don’t lift anything you can’t lift with one hand” that I got from the doctor’s office, I add “don’t swim,” “don’t use the weight machines at the gym,” and “don’t do upper abdominal exercises like sit ups and the plank that may put pressure on the pelvic floor while it’s still weak.” I also get some recommended calf muscle stretches (to avoid clots) and pelvic floor exercises (basically Kegels), though both are at sites of unknown authority.
12) Determine that both of the hospitals with which my gynecological oncologist works have pelvic floor rehab should I need it.
13) Write up exercise questions to go over with doctor.
14) Exchange messages with the instructor. I will have no assignments due next week, so even if they have to go abdominal and I wind up in the hospital for several days, I should be OK in terms of classwork. (The consent forms said explicitly what the doctor had indicated less explicitly, that the plan is for me to get a vaginal laparascopic hysterectomy. I may or may not spend the night.)
Still need to fill out more forms for the hospital. Meanwile, the progestin seems to have totally stopped working on me; I have had two weeks of heavy flow days, while taking all three daily doses of the hormone that’s supposed to stop the flow. I’m still taking the hormone, in case stopping it would make things even worse.
(Highwire is http://highwire.stanford.edu. My mother had instructed me in how to search it; go to Advanced Search Options, and select “Include PubMed” and “Reviews only.”)
We went to the hospital this past Monday. Joel’s big fear was that I would prove to have cancer, and would die. My big fear was that I would react badly to the anesthesia, and would throw up. When I was four, I had an eye operation, for which, as was the medical practice of the time, I got ether, and for which, as was the medical practice of the time, my parents were not allowed to be with me as I regained consciousness. I woke up as a four-year-old without her parents who couldn’t stop throwing up. So I prepared myself for the operation by begging the anesthesiologist to give me every antinausea drug he could, and by wearing Seabands (the admitting nurse took the Seabands, but gave me a scopolamine patch in their place).
My memory of waking up is of being pushed on a gurney, trying to turn onto my side, while the people pushing the gurney tried to stop me from thrashing. While I didn’t actually feel nauseated just then, I had the memory of the childhood surgery and the fixed idea that I would at some point throw up, and must be on my side rather than my back when I did so. I didn’t, in fact, ever get nauseated or vomit; either only ether affects me that way or the antinausea meds they gave me worked. My next memory is of being in the recovery area, and of being told by my husband, “You have cancer.”
I don’t remember making any response to Joel’s words. Joel tells me, in fact, that I didn’t; I was still too dulled by the anesthetic to react. I had a couple of days, between the diagnosis and the arrival of the pathology report, to react to the news without any real idea of what my survival odds would prove to be. The biopsy that can be done at the time of the surgery is more cursory than the pathology report, so what we’d been told from that was simply that there were malignant cells in the left ovary, and that it wasn’t known yet whether the cancer started in the ovary or the uterus, or what stage it might be. So I could, for all I knew, find out in a few days that I would almost certainly die before the year was out (ovarian cancer is sometimes detected only very late indeed), or, on the other hand, that I was very likely to live.
The pathology report came a couple of days later. Good news. 75-80% chance of survival. Worth all the chemo and radiation it will take me to get there.
And so I posted on Facebook a link to the song, “I Will Survive,” and await, next week, further details on my chemotherapy.
My diagnosis inspired the administrative assistant in my group at work to get me on disability right away (this is when I discovered that my company’s short term disability policy, for the length of time I’ve worked there, actually provides four months disability at full pay, more than I imagine I’ll possibly want, since the doctor says I can work while getting chemotherapy), and everyone else I know to clean my house. My mother and one of my sisters are going to visit sometime soon, and my mother had suggested she would clean the house, but my husband and Quaker meeting are beating her to the task. More than that. My living room chair is to be replaced with one more suitable for someone recovering from abdominal surgery (it is a butterfly chair, not optimal for getting up if your muscles are shot), my rug pulled up and replaced with tile, work parties arranged. Cleaning people are then to be hired to come regularly for as long as my chemotherapy lasts (and, I have to admit, knowing me, the one thing I can almost guarantee you that I will lose, while getting chemo, is any will at all to clean the house). I am at a friend’s house while my whole condo gets remodelled.
I suppose this may count as a privileged experience of cancer (especially when you add the number of doctors, among family and friends, who are available to offer their two cents and provide referrals should I ever prove dissatisfied with my current oncologist). I may have to go through all the usual side effects of chemo, but when I come out at the other end of this, triumphant and still alive, I’ll come out at the other end in a much nicer house than the one I started with.
Till then, my goal is to face this cancer with as much courage as my father showed in facing his. Dad is my cancer role model. So my closing post will be from a blog post I wrote about the last days of his life.
Dad lived seven years with that cancer, and multiple myeloma is a form for which there is no cure. For the first few years, he would always insist to me that he felt no illness at all, not from the cancer, not from the chemotherapy. He was always fine. I remember at first he told me he wondered if the diagnosis was even right, he felt so well.
When I last saw him, he was no longer well by any stretch of the imagination. His arms were thin, his stomach swollen. He could eat only a little at a time. He did not leave the house; his exercise consisted of walking around the living room for a little while. He needed dialysis for several hours three times a week (had needed it for months), and needed to nap for a couple of hours afterwards. Even his fine tenor voice was weaker. Dad did not, like Hunter Thompson, seek to leave life “at the top of his form.”
And I have to say that there is something special in those last weeks of life at the bottom of your form. Nearly all of Dad’s children, and some of his grandchildren, made the visit back in those final days. I talked with Dad, we sang together, I heard as many as possible of the old stories of his life, and his spirits were better than those of many people in much better health. And I’m told that, after I left, when I sent him my tape of me singing a duet with him, that last week when he was in the hospital, he sang along with it to make a trio. I’m told that when my sister and niece visited him in the hospital, he sang and my niece danced. I like to think of him that way, singing until the end.
In the end, though, when the last of several chemotherapy drugs was not working at all, and the dialysis was not working normally either, and the hospital was not managing to turn things around, and I was hearing that he could die any day, and likely would not last long no matter what – then Dad chose to discontinue treatment and accept morphine. And died not long after. I think it was a good death. Good in that he lived life at the bottom of his form fully, just as he’d lived life at the top of his form fully, and as I hope to do when the time comes for the bottom of my form.