At the Baronial Council meeting September 12, the news that I was in hospital with cancer came as quite a surprise. Now that I am home, I wish to let those of you who want to know the details have those details, and to apologize if you felt out of the loop. Also, part of my purpose is to be able to explain once, and only once, so as to not empower the cancer in any way by speaking of it frequently other than something that I am now going to beat.
A few of you knew that I had been hospitalized in mid-August with DVT's (Deep Vein Thrombosis, or blood clots). At the time, I had no idea that the clots were actually a symptom of what is known as the Silent Killer. My masses were only discovered on September 2, at which point I was hospitalized and pretty much incommunicado until today. So, in hindsight, it all happened very, very fast!
In December, 2004, I began what may have been one of the first symptoms to ultimately save my life: I developed an intermittent cough. They say that, if your cough persists for more than ten days, consult your physician. Because the cough came and went, I kept putting it off. One day in June, when the cough was particularly hard, I decided to try and see someone while it was active.
Of course, two hours later, when I was in the office, the cough was pretty well gone. But, the ball was rolling. Tests were done. An X-ray was scheduled.
In the mean time, Will Maxwell had been helping me to begin the construction of my new pavilion. That involved a lot of lifting and carrying, canvas, parts, etc., up and down the stairs at the Cathedral. This led to what I thought was muscle strain in my lower legs, first my left, then my right. At Coronation July 15, not only was I stricken with laryngitis, but you may have seen me hobbling around.
It turns out that there is a reason why they tell you, when you go on a drive, be sure to stop every hour and walk for a few minutes. Those sore legs were, in all likelihood, not from pulled muscles, but from the beginnings of blood clots.
Returning from Coronation, I had my first follow-up appointment about my cough. At the time, I mentioned the swelling in my leg, but it was dismissed as muscle strain. Two weeks later, again as a follow-up to the cough, I once again brought up my leg problem, but was dismissed.
On August 9, the cough became a secondary issue, as my left lower leg swelled and walking became very uncomfortable. I asked for a different practitioner (having been blown off before), which ultimately will have saved my life. Bill was concerned that it could be blood clots. If blood clots break loose, the likely result is a pulmonary embolism, as the clots move though the veins and the heart to the lungs. Bill advised me to get an ultrasound.
My first ultrasound was on Friday, August 12, at which point things start to move very, very fast. The ultrasound showed DVT's (Deep Vein Thrombosis) in the leg. I was advised to go straight to the Emergency Room.
The scathingly brilliant (and very young!) E.R. doctor put together the blood clots in my leg with the persistent cough (my first presenting symptom) and was suspicious that I might already have blood clots in my lungs. A CAT scan was ordered and confirmed that, yes, there were several small blood clots in my lungs.
At this point, I was faced with the first of what were, for me, difficult ethical questions. As you know, I have been a vegetarian for more than twenty years. The medicine that they wanted to start me on, Hepron, is a porcine product. I very nearly went home. But, after much discussion with my sister Jennifer, and with Jay's urging, I was pressured to choose life and accepted the medicine. I was admitted to the ICU in the wee hours that Saturday morning.
The Hepron, by the way, is essentially an anti-coagulation drug. Its purpose is to immediately increase the time it takes for blood to clot. Coumadin is the oral anti-coagulation drug that takes a few more days to become effective, interfering with the body's own clotting process. So, I spent five days in hospital until my INR (a clotting measure) was high enough to feel that I could be safely sent home, less likely to 'throw' clots into a pulmonary embolism and to allow the clots in my right leg to break up over time.
While I was in the hospital the first time, I believe I was already starting the formation of the next clots. I reported a similar sensation in the inner left thigh. At the time, they thought it was the strain of frequently getting in and out of a higher bed on the 'off' side.
The question begins to arise, why on earth am I forming clots? There are three main risk factors: you're a smoker, you live with a smoker or you're on estrogen. I fit none of these categories. So, it becomes a problem to not just clear up the clots I'm forming, but to find out why they're forming and stop it (that's why one goes on the Coumadin).
Two days after being released, it was apparent that the left thigh was now becoming a problem. A second ultrasound was ordered (August 19) which confirmed that I had a clot in my deep femoral vein from my knee all the way to my groin. However, I was already under treatment for clots and there was 'no point' in admitting me to the hospital 'just' for pain. Thus began my living room camping experience. As the weekend progressed, I became less and less mobile, clots began to form below the left knee. Since I couldn't walk, obviously, I couldn't come to support my friends at Sergeants! But, I still didn't know that it was only the opening salvo of the Silent Killer.
I saw Bill again, in agonizing pain with the clots. The timing couldn't have been better. The pulmonologist had wanted me to have a follow-up ultrasound on August 26. But, since I had had one on August 23, I didn't get that one. On Friday, September 2, the day of my follow-up appointment with the pulmonologist, it was decided that, yes, he did want me to have a fresh ultrasound before coming into the office.
Now, in a sense, you can say that the story began that day, less than two weeks ago. But it happens now very, very fast. Remember, I'm still very immobile from clots. I need regular testing of my coagulation numbers. Also, I'm becoming more and more tired. And, when I woke up that morning, I felt the familiar pain of yet another forming blood clot.
First, I had my appointment with the Coumadin clinic, where twice a week they were checking my INR. Once I got home from that appointment, we got the call that, yes, they would fit me into Inland Imaging for my fourth ultrasound (with only minutes to spare). The ultrasound showed that, yes, two new clots were forming in my groin. But, my INR's were actually very high! How could this be happening?
While I dressed, the technologist consulted with her supervisor. They decided to do a follow-up ultrasound of my abdomen. Not being a doctor or a radiologist, she kept her comments to a minimum, but indicated that there were some 'masses' (but I still wasn't alarmed, figuring she was referring to more clots).
Back home to a quick lunch, then into the pulmonologist at 1:45. By now, he's seen the ultrasound and consulted with the radiologist. Those masses were very likely the cause of all the clotting. By great good fortune, he was able to get me in to see the Gyn/Oncology surgeon that very afternoon for a quick consult before admitting me to the hospital for the second time.
So, straight off to Cancer Patient Care. An initial pelvic exam seemed to indicate that the ovarian mass was smooth and somewhat mobile, leading the surgeon to believe that it was possible that the mass was benign. I would be admitted to the hospital again, taken off of Coumadin, put back on Hepron and scheduled for a hysterectomy on September 6 (the other ethical dilemma: I had to decide to accept blood transfusion).
Saturday, I had a CAT scan of the abdomen (they had been looking in the lungs only, before!). The CAT scan, unfortunately, indicated that the main ovarian mass was not actually benign.
For decades, I have held a deep, dark secret. I have actually been suicidal since I was 16. Any years I have had after that have been a bonus. But, something happened when they told me that I have cancer. I decided that I actually want to live. Just in time, eh?
The exploratory surgery entailed a complete hysterectomy. I had a rather large mass on the left ovary and a smaller mass on the right ovary. While I came through the surgery, it was not the smooth sailing she had hoped for. There were, as suspected, several lymph nodes that were constricting veins and arteries, causing the clots. She had to remove parts of a vein. But, hey, as a bonus, I got a free appendectomy!
After surgery, I was placed on a morphine pump. This turned out to be a very bad thing. For days, I was in and out of mild hallucinations. When I would cough, I would activate a gag reflex that would end up in painful vomiting. So, the first days post surgery were very hard (making me wonder if, after all, I did want to live though it!). But, a few days ago, I was moved onto oral pain killers and have had rapid improvement, being able to keep food down, finally!
The final pathology report showed that it appears to be standard ovarian cancer. As such, I will undergo about 6 treatments of chemotherapy over the next 4 and a half months; I will probably not need radiation. I am still very clotted in my left leg, with lots of edema on both legs. The swelling will likely begin to reduce shortly after my first chemo September 26.
I feel that I am a very, very lucky person! Ovarian cancer is called the Silent Killer because, by the time it has been found, it is very often too late to stop. But, it made a mistake. It sent out an opening volley with the blood clots and, due to some excellent sleuthing by alert doctors, it was caught.
Jay, all the while, has been a staunch pit bull, taking care of me. After too many visitors the day after surgery, he pretty much put me on restriction. Unfortunately, when most people come to visit a recovering patient, the patient does a certain amount of hosting or entertainment, comforting the visitor, at a time when reserves are low. The only folks who came to see me were on strict orders to, basically, just sit with me. The twelve days I've been in hospital, even my Dad had only one real visit.
So, at the moment, I'm best protected by resting (not on the phone). While I didn't mind so much talking about the clots as I was going through them, I'm very thankful that I haven't had to explain the cancer over and over again, because I feel (very) strongly that this only concentrates on disease, not wellness. And I'm going to get well! (though I am going to lose my hair).
Please be patient with me. I will be returning to mild activity as I can and look forward to seeing you again soon. Please do not send flowers (Phoebe is a problem child!). If you feel you must do something, send a contribution to Cancer Care Northwest - they're taking very good care of me! I plan to do some updates to web sites this weekend (congratulations, Vulkanfeldt!), but have not even opened my e-mail box since I got home yesterday (and will probably not take the time to do so for a few more days... I'm sure it's bound to be packed and overwhelming!).
I'm going to beat this thing. Your good thoughts are greatly appreciated.Ever your servant,