I was planning on writing about my experience with Tamoxifen earlier than this, but I was pretty much a poster child for it the first year. I know, it’s hard to believe it’s been a year already. I knew there were numerous side effects that you could experience while on Tamoxifen, but the only real issue I seemed to have was aching hips from time to time. Diet and exercise seem to help manage that aspect. I do feel like my head is in a fog occasionally, and I have trouble remembering things sometimes. They say that’s normal for menopause any way with lower estrogen in your body. I was just experiencing it a bit earlier with the medication induced side effects.
I went a year and a half with no menstrual cycle and suddenly had a two week very heavy period out of the blue. I thought it unusual but not enough to say anything to my doctor. About the same time, I started experiencing back to back urinary tract infections. After my third one in two months, my gyn doctor insisted that I come in for evaluation. I conceded and let him know about the out of the blue menstrual cycle which seem to concern him much more than me. I was told I needed to have an immediate ultrasound and biopsy to see if I might have developed uterine cancer.
Wow, I wasn’t expecting that…one of the very rare side effects of Tamoxifen is that it can cause uterine cancer. Since I wasn’t having much in the way of issues, it never occurred to me that I might end up with another type of cancer.
Our family vacation was scheduled to start the very next day, we were heading to Virginia Beach for the Warbirds over the Beach Airshow. I wasn’t mentally prepared for a biopsy the day of our departure, but that’s what had to happen.
I had an unusually painful ultrasound to begin with and the tech never could find one of my ovaries. After causing me much pain, she finally decided to quit torturing me. With all of the procedures I’ve had since breast cancer, you’d think there wouldn’t be too much they could do to me at this point to cause me pain, but I was wrong. Next up was the biopsy, that hurt like hell and yes, after 3 scraps of my uterus, I was in tears and he was finished with the samples.
There is nothing like having another possible cancer diagnosis looming over your vacation plans. An airshow was planned too, which is one of my passions, photographing beautiful planes and listening to the roar of a radial engine breathes life into me like little ever has.
It felt like a little black cloud was looming over us as we headed out for our trip. I don’t think I can begin to tell you what it felt like this time. The breast cancer diagnosis was like a car wreck and I had survived. Now, uterine cancer, really? So many things went through my head and I was lost in my thoughts for a few days. I’m still waiting on clearance from the FAA for breast cancer. If I have another cancer, will I ever get to fly again? I wanted to die.
Going to the airshow was a wonderful distraction on one hand, but on the other, it made me miss flying like I was missing a limb. My soul ached. I kept asking myself if I’d be content to just be an aviation photographer and not a pilot if that’s how things play out. I didn’t really have an answer; well, the answer is no, but reality is, I’ll have to be.
I know I’ve become a better photographer over this past year, and I love photographing planes. But, I miss flying like a piece of my soul is gone. I look to the skies and long to be among the clouds. I want to watch a sunset and photograph it from 5,000 feet. I want to loose myself in the vastness of the sky and forget what makes me hurt. Up there, I belong and everything sad melts away. It warms me from the inside out, and I miss it with everything in me.
The practice day at the airshow was wonderful and I got to see the BF-109G fly for the first time. It was an incredible day and I got some great photos.
The Saturday show, well, let’s just say my little black cloud of anxiety manifested itself to the skies around Virginia Beach and rained on everyone’s parade. At least that’s how it felt to me. The show cancelled, but we walked the hangars that day and I photographed many of the planes. We spent time with the wonderful docents and learned some history about many of the aircraft. The hangar dinner and dance still went on but with the rainy day, there wasn’t much chance for any sunset pictures this year.
We headed to the Outer Banks of North Carolina on Sunday. It was still raining and quite chilly for this time of year.
Monday we went exploring the lighthouses on the island. I got a call from my doctor as I was taking pictures and admiring the Currituck Lighthouse. He asked me what I was doing and I told him. He laughed and said, “That’s awesome. I have the results of your biopsy, and everything came back benign. It’s negative for cancer.” I smiled and a wave of relief flooded over me and tears welled up in my eyes. He told me to enjoy the rest of my vacation.
Talk about a mood changer! Wow, that big black cloud rained out and the sun burst through the clouds again. No cancer! Thank you, God.
The rest of the trip was a wonderful relief, and I enjoyed it like someone just gave me a free pass. I spent that evening watching a gorgeous sunset while photographing the wild Spanish horses on the north end of the island. How marvelous and free they are, exactly how I’m feeling now.
I had a long talk with my oncologist when I returned about my options moving forward. The good news is, there are options and after a year of being on Tamoxifen, I’m leaving it behind for different medications with other side effects.
It turns out that Tamoxifen acts like estrogen in your body even though it inhibits estrogen. It causes the lining of the uterus to thicken and you can have episodes of bleeding. My problem with the bleeding was I started having migraines again and they were worse than ever. I had to do something to put an end to them. It was making me nonfunctional and I wasn’t willing to live with them.
The decision was made to start me on Zoladex shots, which is an implant you get in your stomach and lasts for 30 – 90 days depending on the dosage they prescribe. For the first 30 days, I had the shot and continued Tamoxifen. Talk about being in a fog, the first week, I felt like crap and was highly emotional. I wanted to rip peoples heads off. It made me very depressed and the hormonal impact was overwhelming at times. After the first week, things settled down and I felt more normal. What is normal these days? Well, that’s a moving target apparently.
When I returned for my second shot, they switched me off of Tamoxifen and on to Arimidex. It’s supposed to inhibit estrogen like Tamoxifen. It seems to have similar and maybe more intense side effects. So far, it’s made me very tired, my head still feels foggy some days, I seem to be having some swelling and pain. My hips hurt worse than when I was on Tamoxifen, but again, diet and exercise still seem to help.
From the Arimidex website,
“In advanced breast cancer trials, the most common side effects seen with ARIMIDEX versus tamoxifen include hot flashes, nausea, decreased energy and weakness, pain, back pain, headache, bone pain, increased cough, shortness of breath, sore throat, and swelling of arms and legs. Joint pain/stiffness has been reported in association with the use of ARIMIDEX”
Zoladex has it’s own share of side effects and seem to mirror many of the Arimidex side effects. So, I guess you can say I have a double dose of possible issues to deal with on the new medications.
There is one more option if I get tired of taking shots, and that is to have my ovaries removed. I understand that I’ll still have to take Arimidex, but I wouldn’t have to have the Zoladex shots any longer.
Either way, the recurring theme seems to be that since I had estrogen positive breast cancer that I will have to be on an estrogen suppressor for 5 – 10 years. I wish that wasn’t the case, but if it keeps cancer at bay, then I guess it’s a good thing.
I hate being on any kind of medication. I don’t like the way it makes me feel. If there was a way to be off of all of it, I’d prefer that option. It doesn’t look like that will happen for a while. I’m trying to manage with a low inflammation diet and regular exercise. My oncologist suggested that I get my heart rate up at least 3 hours a week to help ward off cancer. Going to the gym helps, there are a lot of days that I prefer not to go but I manage to muster up enough energy to go at least 3 times a week. I also walk most days.
To sum it all up, cancer sucks, post cancer medication sucks, but the long term outlook is good even if my disposition is challenging some days. I still try to find some little treasures in each day. Beautiful clouds, a mesmerizing sunset, a starry sky, a tantalizing moon or just breathing in the fresh air and sunshine outside are enough to ease my soul and quiet the noise.
Breast cancer is not about crossing the finish line. It’s more about staying the course for the long term. Unfortunately, it’s a daily battle, both mentally and physically, even now. It takes endurance, persistence and consistency. I guess in some ways, it’s about trying to keep the enemy at bay. For me, the mental side is the toughest. I hate the way the medication can drag me down. I try hard to push past it and most days I’m successful; but some days, I just curl up inside myself and wish that life was different. I know long term breast cancer survivors have told me they seldom even think about it any longer except once a year when they have their mammogram. I hope I get to that point and past the medication. It will be interesting to see how I feel when I no longer take any of these medications. I look forward to that day indeed.