Written April 2014 – published Nov. 2015
WARNING: This might be too much information for some. Contains graphic description of woman issues…
The last four months have been spent in a waiting room. Not actual but metaphorical. Well, some time was in actual waiting rooms but most of it felt like someone had pushed a pause button. Have you ever felt that way? Like life was on hold and no decisions could be made or any big plans made because you didn’t know what was around the corner? Like you’re holding your breath and waiting to exhale.
For someone who has been through a cancer experience, specifically breast cancer treatment, you’ll understand. For some of you, this will be too much information. When I was diagnosed, I was 48 years old and not menopausal. I had menopause artificially induced with chemo and then was advised that because my type of cancer was estrogen fed, it would be best to have a surgery to remove my ovaries and fallopian tubes to be post-menopausal. This was necessary so I would be eligible to take a chemo drug to prevent recurrence. I needed to be post-menopausal to take it. So I had the surgery and went through a quick and dramatic menopause hell and started Arimidex. This drug also came with lovely side effects which I have been living with for the past 4 and a half years. The main ones were fatigue (not the, oh boy I feel tired…I must’ve done too much today. More like I can’t drive home because I’m too tired to lift my arms up to steer or concentrate on the road) and body aching (Like I’m 80 years old and hit the ski slopes and didn’t train for it kind of aching). The other one which nobody talks about is the lack of any sexual desire and if there is any inkling, the quick menopause took care of any natural lubrication and the chemo drug caused my internal organs to atrophy to the point of activity causing much discomfort and pain.
You’re wondering why is she over sharing?
Because this is all background information to the reason behind this post.
In August of this past summer, the oncologist gave me permission to go off this drug for a while. He called it a medication vacation. We had booked a dream vacation to celebrate our 35th wedding anniversary and my five year survivorship. We were going to visit Italy and Greece – taking 3 weeks to take a cruise and see some of our bucket list travel destinations. The doctor suggested that if I went off the drug for a few weeks before the trip, I might have more energy and less achiness to enjoy the trip more and who knows, maybe some drive? The trip was slated for the end of September and I was to be finished my five years of this drug treatment in April so it seemed like a good time to try this. After a time of weaning, I took my last pill on Sept. 2. And we went on our trip.
I hadn’t seen a significant change in my fatigue level or body aching during the trip – it was better but not a huge change. I kind of thought maybe that’s just what normal 54 feels like! Maybe every 54 year old is tired and achy! But I didn’t go back on the pill right away when we got home. I wanted to see if I gave it just a bit more time, I could see if I would feel better than I was. I did. In just a few more weeks, I realized I could run down a flight of stairs without thinking about any pain and I could go all day without feeling like I had been running on empty. That’s when I made the decision to not go back on the drug. I didn’t discuss it with the oncologist. I informed my family doctor and said I had made my decision. And everything seemed to be fine.
Until November. I began bleeding. And I checked out what everyone online said about what it could be. Except I was post-menopausal, remember? And I have no ovaries. Yikes. I called my family dr. and made an appt. to check this out. He said it was not a rush so I could wait until December to come see him.
So I waited
…thinking the worst and wondering how special one would need to be to conjure up a period when one has no ovaries and is deemed post-menopausal.
In December, I saw the dr. and his words to me were – it needs to be checked out because it might be cancer. It may not be, but there is no logical explanation for why you are bleeding and the most plausible explanation is that it is cancer – or polyps or fibroid cysts. But we won’t know until we do a pelvic internal ultrasound and see a gynecologist.
The date I was given for the ultrasound was at the end of January.I managed to have another period with cramping and feeling like a teenager while I waited.
And I waited.
I went for my pelvic ultrasound. That’s a special little test if you’ve never had the pleasure. Please try it for a good time sometime. You’ll feel like you deserve a smoke after. Just sayin’.
The results wouldn’t be available until the middle of February so an appt. was made to see the gynecologist and go over the results then. So I waited.
At this appointment, the gyn. reviewed my history and said plainly that with no ovaries, one does not have periods and so this must be either cancer or something else. She went over the results of the ultrasound and was not happy. She said the results stated that the uterine lining was too thick and this was not good. She wanted to perform a biopsy immediately and advised this should be done NOW. Her fear was that we were dealing with endometrial cancer and the sooner we got the diagnosis, the sooner we could treat it. So a biopsy was done right there and then.
And then we waited.
The biopsy recovery took some time with the cramping and bleeding that comes with it. I made an appt. with the gyn to review the biopsy results in the middle of March. About 2 weeks after the biopsy, the nurse called from the dr.’s office with the happy news…ahem…to let me know that the results had been inconclusive because the biopsy tissue samples had not been sufficient to do a full battery of testing. I was asked to come in for another appt. to do a more invasive biopsy and a hysteroscopy – dilating my uterus and inserting a camera to take a look around. Honestly, I cried while talking to this poor nurse. This was so disappointing. The appt. was made for the last week of March.
So some more waiting.
During these waiting periods, I was strongly discouraged from any more internet searches and I was told “not to worry”. Sure. You tell me I most probably have endometrial cancer and I shouldn’t worry. A quick hysterectomy would take care of it and I probably wouldn’t need chemo. Yes, and pigs fly.
I have been living my life during all of this waiting. And it’s been okay but it’s like there’s another life going on under the cover of the life other people see. And it’s not okay to share with others. Going through cancer once is bad – really bad. You get to experience the worry and anxiousness in the eyes of your husband, your children and sisters and friends and mother and everyone else you decide to share your battle with. And so when you don’t know for sure, you don’t share. Why would you want to put people through something that might not be? Or share it too early and they could be spared a few weeks or months before they need to know? After the biopsy, I decided to share with a few people. I realized that they did care and it felt like the burden was eased a bit by other people loving and caring and praying.
So the day of the 2nd biopsy came. And I was at peace. Thank you to my cheerleaders who were praying for me. I really had no anxiety. My husband was there with me – his shoulders are sagging already from the weight of my first bout with cancer and he has bags under his eyes from sleepless nights. I feel so convicted with guilt that I am dragging him through another medical jungle landmine experience. But he comes. And I appreciate it to the moon and back. God knew who I needed to marry and come alongside me and love me. Thank you, Jesus for this rock of a guy who hasn’t run in the other direction…yet. This is what 35 years of learning how to love looks like.
Now the appt.
– as the camera was sneaking around my private parts, the screen was adjusted so we could see what the dr. was doing and see what she could see. And what we saw was amazing. And what she said, and how she said it, was amazing. She exclaimed – this is healthy. I don’t know why the ultrasound results said what they did because there is no thickened uterine lining here. It’s completely healthy in here. What is going on? I would’ve danced for joy except my legs were up in stirrups and it would’ve been a mess with the saline solution used to dilate my uterus. She did the biopsy anyway – just to be sure – but said this is good news, very, very good news.
So now we’re waiting again.
For the official biopsy results. The appt. is for middle of April. Part of me is still waiting to exhale. I can’t believe it’s true, that’s it’s okay to get on with life. So many decisions have been on the back burner waiting to see what the outcome will be. I feel like I’ve been living with one foot in the grave. And that’s not okay. Spring is coming and I am determined to live life again.