It was a beautiful day in Orland, Maine, a Friday, September 25th, a month and a half after I took my sister to airport in Fairbanks, Alaska. I was busy matting and framing a print I bought for her in Skagway, Alaska. A print by an artist whose style she admired multiple times while we shopped together in Alaska. In our motorhome, I keep my mat board supplies under our mattress. Rob held up the mattress as I tugged out the chosen matting and the cutting board I use to protect my dinette table. My phone rang but I didn't hear it while we were doing this.
I went about cutting the matting and carefully brushed away any dust before placing it in its frame. I showed it to Rob, who approved the color choices I made for the double-mat. I wrapped it with lots of bubble wrap and put it in the perfect box for shipping, which I would do when we got to Lancaster, New Hampshire.
Finally, later in the afternoon, I picked up my phone and saw I had missed a call from my sister. A voice mail message awaited my attention, which essentially said to call when I got the message. The thought that first crossed my mind was whether our mom was okay. I called her right away. Never did I expect to hear that she had endometrial, aka uterine, cancer. What I recall of the conversation is only a fraction of what we talked about. I remember she mentioned bleeding, seeing her doctor, cancer, hysterectomy. Did she tell me surgery was going to happen the first of October, then, or in a subsequent conversation? I don't know. I think I was reeling from the news.
Reeling is not something we generally do in our family. We are pretty pragmatic. It doesn't help to get hysterical or think of the worst. We deal with it. We do what we have to do and take it as it comes. We try not to worry unless there is something to worry about. But, I thought about her constantly.
And I thought about another thing.
Some months ago, maybe six or seven or eight, someone had a post on Facebook, to which I commented that I feel I've lived a blessed life. So many people deal with more than I can imagine in their lives: deaths of numerous people surrounding them, whether family or close friends; serious illnesses that require a level of strength and fortitude to survive it, whether it be themselves or someone they love, and still manage to maintain sanity; or, other types of trials such as homelessness or murder or some such thing. I haven't had to deal with any of this. I wondered, in my comment, when the other shoe would drop for me. When would it be my turn to deal with something harrowing, mournfully sad or life changing?
Our mother had uterine cancer 15 years before. We don't know what type of cancer cells she had but, after her hysterectomy, they found no further cancer in her uterus. They apparently got it all with the biopsy. It was caught early. That was great news, a true relief. It seemed easy peasy. She got checked regularly by the doctor over several years and it was soon in the past. I never once got a sense of impending doom. Somehow, I just knew everything would be fine.
But would it be the same for my sister? Would she be alright? Would this be the experience to test my fortitude, my strength, my resolve? After all, I'd been feeling as though something was going to happen for months.
Then my sister called me about 5 or 6 days after her hysterectomy. Her biopsy indicated that she had the bad cancer cells. The ones called 'clear cells.' The type that are aggressive. But, like our mom, she had no further cancer in her uterus. Her ovaries, fallopian tubes and cervix were also clear of cancer cells. They got it all in the biopsy! We were two for two. She'll need to be seen every six months for a couple of years and then every year for another three to be considered cancer free, but the prognosis is good.
But that's not the end of the story.
The day after my sister called with her positive news, I started spotting. Blood. Not a lot. But blood. I hadn't had any blood since I had a D&C in 2009 for uterine polyps. What the hell?
I emailed my GYN in California to find out what I should do? I told her I was on the east coast and she said to come in when I got back. I had to explain that I wouldn't be back in California until June of next year. She replied that she still wasn't too concerned since I "wasn't soaking through two pads an hour" but that I should be seen within the next few weeks.
My California friends and family will understand what I mean when I talk about Kaiser Permanente as my health provider. They are not located in every state. They pay for health care only provided in one of their facilities unless, and only unless, it is an emergency - as in having to be seen in an emergency room. I couldn't even pay cash to a doctor and laboratory, show proof it, and have it count against my deductible. Nope. So sorry. Then, while I was on the Kaiser website, I clicked on the 'Regions' drop down menu and found, lo and behold, they have offices in Virginia. We were going to be in Virginia in less than two weeks! I called member services to find out what I had to do to be seen in Virginia. And to their credit, they guided me accurately. I got an appointment with a GYN in Fredericksburg for two days after our arrival.
I was seen by a wonderful doctor who listened to me. She didn't even need to physically check me. She suggested a biopsy right there in the office but, because I go into vagal shock with just about any pain experienced in my nether regions, which is dangerous, and because I drove three hours to get to my appointment and that I'd be in Virginia for only a week, she asked her nurse to see if I could get an ultrasound appointment anywhere in their network that day. And they pulled it off. I did a lot of driving that day, but we were on our way to finding out what was happening with my body. That was Tuesday.
Friday morning, the doctor called to let me know that my uterine lining was way too thick, which is not a good sign. Considering my history, she wanted to schedule me for a D&C for Monday. I had to have a surgical setting to assure I survived the procedure. At this point I was thinking that it was still a good possibility that I was having a recurrence of uterine polyps.
The day after the D&C, I felt so well that we continued our plans and left for my friend's house in North Carolina. We got our motorhome set up in their driveway and were enjoying a conversation when my phone rang. It was the doctor asking if I was still in Virginia. No. I already knew I would fly home if I needed any sort of treatment. The pathologist called her with a head's up and she hated to tell me over the phone but it was cancer. No idea yet what type of cells, but cancer it was.
Wow. I called my mom. She called my sister. I didn't feel like I could make that call and call my five daughters. My sister called me. Or did we text? I don't remember. She told me to use the GYN Oncologist she did. I emailed my GYN in California and told her to refer me to the oncologist. She did. Immediately. That was October 27th.
Within a couple of days, I heard from the oncologist's office. Could I be there for a pre op appointment on November 4th and surgery on November 5th? Yes. We booked my flight to California for November 2nd. In the meantime, I made sure the California people got in touch with the Virginia people. They needed the pathology results from the D&C, which they received in plenty of time. (Thank you, nurses, for your dedication). Good news! I had the better, slow-growing cells called Adenocarcinoma.
The ball was rolling and it was rolling fast. I left my husband behind in North Carolina with the motorhome, our cats and birds. And, since, he went on the Myrtle Beach, South Carolina, then Woodbine, Georgia, and he now awaits my return in Williston, Florida.
My sister who, by the way, is an RN, and was still recovering from her own surgery, accompanied me to mine. On the way to the hospital, I told her what I'd been feeling for so many months. I told her I didn't think mine was going to be the slam-dunk that hers and our mom's appeared to be. When you consider the odds, how could we be three for three?
Just so you know, I was true to form. I was awakened in recovery with nurses speaking loudly, saying 'open your eyes! take a deep breath! when you hear that beep, take a deep breath! open your eyes! take a deep breath! open your eyes! deep breath, deep breath!' I knew exactly what was happening even though the urge was strong just to simply go to sleep.
Fast forward five days. The oncologist called with the pathology results. 'Good news! I'm sure we got it all!' You mean no further cancer was found? 'Oh, no. There was cancer. But none in the lymph nodes, none in the ovaries.' Well, that is good news. 'I don't recommend any further treatment even though there is some controversy about that because the cancer did start to climb into the fallopian tubes.' Ummm. Okaaay? I made an appointment for my follow-up for the 19th. 'Good. Good. I'll go over the results with you then.' Okay.
Although I know it did, I didn't quite realize how much that conversation preyed on my mind until it got closer to the appointment. My daughters wanted to know if I would be joining them for Thanksgiving and I found I just couldn't commit until I knew what was really happening to me, what it all really meant and my questions were answered. After the appointment, I felt much better, lighter. Because, what I didn't know from the quick phone conversation, and the oncologist apologized for it, was that the cancer cells found in the fallopian tubes were detached, which means they were free floating. They hadn't attached to tissue and were not multiplying there. The cancer did penetrate the uterine wall by a depth of 15%. They are most concerned if the invasion is 50% or more. I also found out that there were free floating cancer cells outside the uterus, in the abdominal cavity, which doesn't sound too good to me even though the doctor feels confident that she washed them all out, which is the final part of the procedure prior to suturing.
So my uterine cancer is not a slam-dunk. I will be seen every six months. I will insist on the appropriate tests to determine if any stray cancer cells remained and whether or not they attached to any tissue. After all, who's to say every single cell was found and removed? It's not as though they are visible to the naked eye.
That's my story, but, THIS IS WHAT ALL YOU LADIES NEED TO KNOW:
If you are premenopausal and you experience any unusual spotting or bleeding between your normal menstrual periods, go get seen. Make the appointment. Make your GYN address the possibility of a serious issue if he/she seems to want to blow you off. Or, get rid of that doctor and see someone else. Remember: A pap smear is for detecting cervical cancer, not uterine cancer. Any unusual spotting is a possible indicator of uterine cancer.
If you are postmenopausal, pay close attention to any changes. After menopause, you usually don't experience any kind of vaginal discharge. Both my sister and I experienced sometimes white, sometimes clear or mucus-like discharge just like in our premenopausal days. It just made us think hmmm. We experienced it for about the same amount of time - approximately four to five months before we showed blood. My sister's blood was heavy. Mine was just spotting. My sister, being the RN she is, knew to get seen right away though not because of the discharge, only the blood. It can fool anyone.
And note that my sister's cancer was of an aggressive type but she had no spread of the disease beyond the endometrial lining. Mine was a slow-growing, non-aggressive type but my uterus was riddled with the disease. This means that my cancer was growing, possibly for years, without any symptoms at all.
My sister asked me, if this hadn't happened to her, would I have gone to a doctor right away? I started to answer yes, but I had to stop myself. If I'm being truly honest with myself, I'm not sure I would have. I know I would've seen my doctor, but I may have waited until I got home to California next June. If I had done that, the possibility exists that those free floating cancer cells might have attached in the fallopian tubes. Why is that a concern? Because it means the difference between Stage I cancer and Stage III. It may have even meant my life. And, hey, I've got plans!
Just remember: If it is different, see your doctor. As my sister said to me when she told me of her diagnosis, run, don't walk, to your doctor. And take a proactive approach to your health care. It could save your life.
