If you have just been diagnosed and are reading this, be encouraged. My story is not to frighten you but to reassure you. To show you what the experience is like and to say to you that if I can do it, so can you. YES YOU CAN! "Your body is much stronger than you may imagine".
At 62 years of age I was fit, newly married, preferred to eat organic foods whenever available, practiced yoga, drank only artesian well water, was a successful business owner, mother of four grown children and grandmother of four. It is my intention here to tell my story as it was, in an attempt to encourage others who may follow in my path and to let it be known to all that regular check ups, exploration of symptoms, no matter how vague, may save your life. Ovarian cancer is an insidious, silent killer if not discovered early. Please pay attention to your body. Insist on getting a CA-125 blood test! Last week, my daughter's doctor (a DO not an MD) refused to let her have this test as a marker, despite being given information about my diagnosis and in addition to my specialist's recommendation that she get one. I have strongly encouraged my daughter to change to a reputable GYN. Thankfully, she has listened and is now under the care of an MD who pays attention and is not afraid to be thorough.
For a few months I had been having occasional pain when stool went into my rectum. Seriously, I mean when it was going in... like oooooh.... that hurts! I plucked up courage in February and went for a colonoscopy. There was a pre-cancerous polyp near my appendix which was removed during that procedure (the polyp, not the appendix.... that would come later) but nothing else was found. Rectum appeared normal. Repeat in three years. Hmmm. I felt comforted but was still having the pain occasionally. I thought that I should probably change my diet so I ate less oat bran for breakfast.
I also was having a lot of indigestion and had experienced a lasting vomiting attack while on vacation so I went back for another consultation with the same doctor who recommended a nuclear image scan of my gall bladder. The poor thing was diagnosed as being pathetically lazy but no stones were found. By now it was late April. I remembered that I hadn't received the reminder card for my annual check up with my GYN because we had moved house so I called to make an appointment and got one in mid May.
The Gastroenterologist suggested an abdominal MRI to determine if there was any abnormality causing the indigestion so a few days later, off I went in terror of the injected medium that is used in an MRI. I am seriously allergic to iodine contrast in CT scans. I had experienced three scans earlier in my life while docs were looking for kidney stones, one of which decided to pass when I was seven months pregnant with my fourth child, with more pain than any childbirth that I remember. I had the third scan when my daughter was three months old and that was when the allergic reactions set in.
Very anxious and expressing my concern, I got some irritated reassurance by the tech ..."You didn't tell me in the questionnaire that you are claustrophobic" .... "Er ...Well I'm not but I'm terrified " ..I wanted to stab back at him but kept my mouth shut. "So do you want a sedative or not because if you do it is going to take some time to take effect" he snapped. He gave me a warning that if I moved at all they would have to start over again. "No", I offered "but I am really afraid of having a reaction to the contrast medium that you inject". " Well hardly anyone is allergic to this but OK. I'll give you a push button to hold. If you start to feel sick, push it and we will stop and get you out". I clutched my life line of a push button in my hand, lay down on the narrow board and was slowly transporting into the tube, eyes clenched tight shut. "Dear God keep me safe!" (Is this what it would be like to be buried alive?)
The technician was now in another room and talking to me through the headphones. The machine was extremely loud as it clunked, banged and whirred it's way through the solitary imaging. I needed the headphones and the music! Every now and then, the machine's voice would instruct me to "breathe", "hold it", "breathe" and: "Do not move". "Don't move, don't move, don't move" was my mantra although my body was in fight or flight mode. It went on for about 20 mins until finally it was over. I wept with relief when I finally was ejected (gently) from the tunnel. "You did really well" he said. Yes ... well... no chance of me moving in there. I was paralyzed with fear!
The fear was twofold. Obviously I was fearful of the procedure but I was also fearful of what might be found. I went home trmbling and waited for a few days for the results which were not sent from the gastroenterologist office but transferred to my own doctor who's nurse then called me with the information. I have to wonder, given the results, why any time was wasted in letting me know but the receptionist let me know that all was well in my stomach area but there was a 6cm mass in the lower abdomen so a pelvic ultrasound was recommended as a follow up. A mass? What does that mean? The nurse said that I should go see my GYN so I told her that I had an appointment in two weeks. Let’s see....6cm is less than 3 inches so "It's probably my old faithful fibroid" I quipped, with relief. The fibroid had been known to enlarge and decrease in size as I had used more or less of the prescribed hormone creams for the control and relief of my lichen sclerosis disease over the last 30 years. This couldn't be cancer as there is just none in our family. I was quite confident that this was nothing to be concerned about.
I have been with my GYN for probably 25 years. I like him, trust him and enjoy his humor. At this appointment he was very serious as he listened and examined me. “I want you to get a pelvic ultrasound immediately. There is a mass but I cannot tell without the scan, if it is attached to your uterus or not. 80 % of these things are benign but go over to the hospital now and get the ultrasound. I will call you. You are going to need surgery you know." It isn't the first time I have had this test as we had been watching my fibroid for years so I wasn't overly concerned. He called the next morning asking me to come in and bring someone with me. My two daughters both insisted on coming. We learned that the mass had grown and was now 9cm. My GYN was leaving for England to go to a wedding so he couldn't do the surgery but would like to refer me to a friend of his at the University of Washington. He made an appointment for the very next day counseling me not to be too concerned. It could very well be a benign tumor. Surgery was already scheduled for the next Wednesday. May 26th. Today was the Wednesday before.
My husband of 5 months had gone to Canada in January of that year, not long after we were married, to be with his sister as she was having surgery for a pancreatic tumor that had grown in her lung. She was a ten year survivor of pancreas cancer at that point. After a few weeks spending time with her and his family, he was coming home to Seattle in February, via Vancouver BC but was stopped at the border by Immigration officials who demanded to know why he was coming back to the US. "To be with my wife" he offered. "Do you have a Spousal Visa?" "Well no. What is that?". My God! Who knew? They took away his passport and interrogated him, then ordered him back to Toronto. There were no more flights that day so he spent the night in Vancouver and phoned to let me know the news. I would have to apply for a visa for him to be allowed to re-enter the USA. It could take months. I agreed to get an immigration attorney to help us. I began that long slow process the next day. Even now after five months we had no idea of the status of the application. It is impossible to get a live person when calling Immigration for infomation. There is no such person. The attorney was useless too. John and I had been talking on the phone daily, e-mailing and hoping for all that time. In March he had gone to Antigua in the West Indies, from whence his family hial, to stay with his brother for a while so I managed to surpise him for his birthday by paying a visit. My staff could manage the store while I was gone for a couple of weeks. We also met up in Puerto Vallarta for a couple of weeks during that separation time, revisiting the place where we had met. And now this.
So here I was, looking at the possibility of cancer, still thinking that it was benign and arriving at the address in Seattle that my GYN had given me, to see his friend Dr. Tamimi. Looking up, I saw that Seattle Cancer Care Alliance was the sign on the building. My stomach sank. Oh Shit! My GYN didn't tell me that he really thought that I had cancer. He was being kind, knowing that I would freak out if he told me what he really believed. He didn't tell me that Dr Tamimi is the head of the GYN Oncology Dept here and a Teaching Professor at the University of Washington. Oh God! Oh God! My youngest daughter, who had driven me up from Olympia, was fantastic support as she counseled me about panicking. We parked the car in the underground parking lot. There were very many cars. I looked around and I marvelled that all these people were here because they had cancer. We made our way up the elevators to the third floor with people who had no hair or looked very very sick. Oh Shit! Oh shit! Stay calm. Don’t panic. This was a benign growth. Nothing to panic about. 80% of these things are benign. Remember?
I was to have another MRI before seeing Dr. Tamimi. Well, at least I knew about those procedures and now knew that I was not allergic to the medium used. I was less concerned than during that first experience although it was no picnic for sure. However, the staff were much kinder than at the Olympia facility where I had the first scan! We went to the lab for blood draw then to the third floor for my appointment. Dr Tamimi had his Fellow for the year with him. She examined me internally and externally then Dr Tamimi did the same. Did I feel bloated? No. Did I have any pain? No... just the rectum thing. Did I need to urinate frequently? Well yes, actually, I did but I knew that I didn't have a bladder infection. I had had a lot of yeast infections recently. Had I had any digestion problems? Oh Yes. Just couldn't seem to get rid of them. Had I gained of lost weight recently? No. Was intercourse painful? No. Neither made comment as they completed their examinations and questions. They said that they would look at the MRI and meet us in the conference room at the end of the corridor. As we left the exam room, I heard them talking as they read the results around the corner. "This is a huge tumor" I heard him say. My knees went weak. Am I going to die soon? I wonder how long I have left. I won't see my grands grown up. But worst of all, I may never see my husband again! I told Charlotte what I just heard. "Mum! They may not have been talking about you. You don't know that they were. Stay calm and let's go to the conference room".
I sat in the conference room at the round table staring at the tiny leaves on the tree outside the window. People on the street below were going through the motions of a normal daily life, like ants busily foraging for food for their queen. Charlotte, next to me ... being strong...offering me a positive thought to each of my fearfully negative ones and Dr. Tamimi's distant comment about the size of my tumor echoing in my head. They came into the exam room very solemn faced and I knew at that instant that this was not a good situation. Dr Tamimi told me that it was very possible that this was a malignant tumor and that it should be removed as soon as possible. They would not know the extent of the damage until they actually saw the tumor. The tumor, belly fluid and biopsy tissue would be sent to the lab during surgery, biopsies would be taken of everything around to make sure that there was no spread. I would go to pre op at 6:00am on the day of surgery. My blood test showed a CA-125 count of 68. It was explained to me that this test is a marker for ovarian cancer. They have people with CA-125 score in the thousands so not to be too concerned. Normal is between 1-20. I collapsed. One minute I was looking out through the window and the next I was in a heap on over the table. Charlotte started to sob. I didn't have energy or momentum to comfort her. I was in total stunned mode. Did I have any questions? It's crazy what comes to mind in a situation like that... I mean, there are so many questions to ask but what came into my mind was, if they are going to cut me open from sternum to pubic bone as has been indicated, how would they get past my belly button? "We will go around it".
Charlotte was driving us out of the city as my cell phone rang. It was my former neighbor who had been Secretary of State for 20 years and was a good friend. Sobbing, I told him where we were and what was happening. In his typical "solve it" reactive mode, without missing a beat he had a solution that would help. "Here is what you are going to do now, while you are in Seattle. Go straight to Senator Patty Murray's office and then Senator Maria Cantwell's and tell them your story in the emotional state that you are in now. Don't wait until you feel better. Go now while you are in Seattle and ask them to help you get John back into the country. You need him with you for this." So we did. It gave us something to focus on and a different perspective to think about. God Bless Ralph Munro!
Maria Cantwell's office wasn't much help. I think the young intern was a little overwhelmed by my emotional state and by the situation. He said that he would look into it. Senator Patty Murray's staff was a different story. Mary, her assistant, met with us and assured us that she would talk to the senator and see what they could do. Could my doctor write a letter stating the urgency and the need for my husband to be present ...and send it to her? He could and did.
"Please allow Dr. Charles back into the country. His wife is to have a very serious surgery on May 26th, 2007. It is important for him to be present to make decisions that may be necessary during the procedure". I didn't actually see that letter until much later and am very happy that I didn't. My husband was on a plane out of Toronto three days later. Wow! I will be forever grateful to Sen. Patty Murray and her attentive, thorough, tenacious, caring staff.