Rest in peace Huey, Dewey and Louie. Good riddance!

Today I celebrate being fibroid-free for ten years. It seems like just yesterday that I had a limited life due to the horrible, daily pain.

The uterine fibroids were discovered when I had a stomach pain so bad I ended up in the emergency department on New Years Eve. When the doctor ruled out an upset stomach from indulging in too much holiday fare, he thought that perhaps it was gallstones so arrangements were made for an ultrasound. I returned to the hospital the next day, New Year’s Day 2005, and during the ultrasound of my gall bladder there were no signs of anything that could be causing me discomfort. The ultrasound technician paused, held the wand up and asked, “Do you mind if I check lower just to cover our bases?”. I indicated that he was welcome to proceed. I unzipped my jeans and pulled the denim out of his way. He moved the wand to below my belly button and began a new scan. He paused…then looked closer at the monitor. “Are you aware that you have fibroids?” My head whipped around to get a better look at the screen. “Wha? No!” The technician pointed out three on the screen, obvious as you please, not even trying to hide.

The technician took measurements and proclaimed them to be 10 cm, 7 cm and 3 cm. I was flabbergasted! How the heck did my doctor miss these during my annual exams?! But, I can’t completely blame my doctor. After all, thinking back, I never did mention discomfort that I was experiencing – back twinges, excessive bleeding during periods, cramping even when it was not that time of the month.

The emergency doctor forwarded the results to my GP, who quickly referred me to a gynecologist. I was very fortunate that the gynecologist was able to take me within 3 months. Around mid-March, I was sitting in Dr. Mawdsley’s office going over my options.

At the time, I was 38 years old and newly single (my boyfriend left me after the initial diagnosis), so the doctor gently suggested I find another option to hysterectomy. I explained that I was single and had never had the urge to have children anyway. He said that he did not want to remove my option for children if it could be avoided, then I meet the man of my dreams and suddenly want children. It happens, sure, but I was pretty darn sure it wasn’t going to happen to me. Besides, by the time I met someone, fell in love, decided to marry and even got to the point where, as a couple, we decide to have children, I knew I would be in my forties. So, no, it wasn’t gonna happen.

But, to be thorough, I did research on the options and discussed them with the gyno. I met with another doctor to discuss uterine artery embolization (UAE). He explained that, in basic terms, a catheter is inserted into an artery in my leg, pushed through to near the fibroid, then small particles are injected to block the flow of blood feeding the fibroid. The hoped-for outcome would be to starve the fibroid and it shrinks to a more manageable size. My tumors were on both sides of my uterus so this procedure would need to be done on both sides. After explaining all that, the doctor informed me that, even if the fibroids shrunk so that they did not bother me so much, that they could come back in a few years. Annnnd, he lost me right there. I wanted these things gone, dead, sleeping with da fishes! They were interfering with my life and I wanted them to go away, not take a vacation and come back in a few years so we could do this all again.

Another option is a myomectomy (removal of just the tumors), but due to the size, number and locations this was not a viable option for me. So that left a hysterectomy.

By this time, the fibroids had progressed to a point where the pain was a daily occurrence. Not knowing when the back spasms and cramps would hit meant I rarely left the house and couldn’t make definite plans. My life was in a constant tentative mode. I would come home from work and lay on the couch because if I tried to move too much the back spasms would start. After a lifetime of never knowing the agony of heartburn, it became a weekly occurrence. My doctor informed me that the fibroids were of a size equal to pregnancy at 6-months. “Morning sickness” and shortness of breath also became a part of my life.

I became sick of people asking, “When are you due?”. Little old ladies, that I had never met before, would suddenly place their hand on my belly and ask, “Boy or girl?” More than once, I had to slip away to a bathroom or around a corner to try to stifle tears of frustration. Sometimes I would fail and have to give up and go home to crawl under the covers and cry. My emotions were a whirlwind and even I didn’t know what kind of mood I would be in from one moment to the next. I pity anyone who was around me at that time.

I walked into my gynecologist’s office for my next appointment determined and set. I told my doctor my decision and after a very brief, firm discussion we both agreed to go ahead with the hysterectomy. That was near the end of August. My doctor set the surgery date for October 20, about 2 months later. It seemed so soon and, yet, looking back, it gave me lots of time to research the procedure, recovery time, what to expect, what to tell others, etc. It also gave me too much time to run worst-case scenarios through the Hollywood lot in my brain. Scenes such as a stroke caused by a blood clot or death on the operating table played daily in my head.

My supportive, fun-loving friends named the three tumors Huey, Dewey and Louey. We even had an Irish wake for them prior to my surgery. My friends were wonderful and helped keep my mind off all the things that could go wrong when an organ is being removed.

The big day arrived! Since I was single with a dog and chinchillas to care for my parents came to stay with me. I don’t think I could ever repay them for the peace of mind they gave me. At least if I died on the table, my furkids would have someone to look after them. Phew!

I prepped for the surgery and sat by myself in a room in johnny-shirt and hospital slippers. More scenes played in my head. Finally, I was wheeled into the operating room. Brrr! Cold! And bright! A nurse asked if I was cold and brought me one of those fabulous blankets that had been in the warmer. (Side note: whoever invented the blanket warmer should get a Nobel Prize for Kindness or something.) The nurse explained what she would be doing to help the doctor during the surgery. She asked if I wanted her to hold my hand. She must have seen the panic in my eyes. I was better, though, once I had that toasty blanket.

The anesthesiologist entered the room, introduced himself and began to explain what he would be doing. He then proceeded to set up the IV in my arm and check his equipment. The nurse and anesthesiologist chatted and double-checked their charts and lists. I could tell they had done this before.

In swept Dr. Mawdsley with all the confidence in the world. He came over to say hello and ask how I was doing and if I had any questions. When I’m nervous I joke around a lot and ramble. I said, “You know, while you are in there if you find anything else I’m not using feel free to take it out. Anything to lose more weight.” Everyone chuckled. Dr. M made the rounds of the room checking in with the everyone to ensure we were good to go and then he gave the go-ahead. The sedative began its blissful work and I recall, just before losing consciousness, I said, “See you on the other side…” I drifted off to the sounds of laughter.

I came around briefly in the recovery room and a nurse quickly explained the angelic, wonderful morphine drip button. When I was in pain I was to hit the button to get a portioned hit of morphine. I immediately hit the button and drifted off again thinking that I still felt better than before the surgery.

I next woke up with Dr. Mawdsley standing over me. He placed his hand on my arm and said, “I’m so sorry I tried to talk you out of this. If I had known what you were living with I never would have tried to talk you out of it.” He later explained, once I was more awake, that there were many more fibroids in my uterus that would have, eventually, made things even worse. There was even another sizable fibroid hiding behind the others. He had to remove one of my ovaries after trying to separate the adhesion between a fibroid and the ovary and I began to bleed too much. They couldn’t stop the bleeding without removing the ovary. But, they were able to save the other one, which would delay menopause, thank goodness.

That doctor will never know the full extent of what his words of apology meant to me. They have stayed with me all these years. Not too many people will admit fault. In one breath, my doctor negated all the people who questioned the amount of pain I was in, the symptoms I was exhibiting. It wasn’t in my head. I wasn’t making it up. I wasn’t putting on an act. Ten years later, that is one of the big things I took away from this. Vindication!

Rest in peace Huey, Dewey and Louie. Good riddance!

Choose the Pebble

It was June when I was first heard, “Your husband has advanced melanoma.”

After receiving this news, my husband and I cried together while we absorbed this information. We kept saying, “We can beat this,” but my mind rushed to all the worst places it could go and, as an administrative assistant, I immediately started planning for worst case scenarios. Then, after a few days of planning his funeral in my mind, I realized, “Gee, he’s taking this quite well.” And I started to watch him. I looked for signs that my alpha-male husband was cracking under the pressure; that he was just hiding his true thoughts and feelings to spare me. I slowly realized that he wasn’t. In his mind, he had already beaten cancer.

Now, I have worked in the healthcare industry and I had done my research so I was well aware that, since he also has lupus and a blood-clotting disorder, he has a less than 40% chance of survival. I started thinking he was living in a fantasy world and I was angry with him for not facing this situation with me. I became like a pebble in his shoe, nagging him to do this or think that or read this research that explains how likely he is to die from this type of aggressive cancer. But he would crack a joke or just ignore me, which made me angrier. I felt like I was fighting for his life on my own.

Then I noticed that, emotionally, he was starting to pull away from me, and it occurred to me that I could lose him before cancer even has a chance to take him from me. I knew something had to change and it wasn’t him. Who was I to tell him he’s wrong in having a positive attitude? So I changed MY attitude. It’s a struggle and I’m certainly not a constant ray of sunshine.

After all, I have read the research and cancer websites and I am aware that my husband’s chances aren’t great. But, there is a chance. And soon, instead of seeing this as my husband’s final months on earth, I started seeing this as, just an awful situation that we have to get through, but that we would get through it…together.

The doctors are amazed that we joke around while we wait for our appointments. They don’t usually hear laughter coming from waiting rooms filled with cancer patients. These doctors also seem relieved to work with people who are not angry with them or panicking. And they start to smile and spend a little more time with us to discuss options and answer our questions. One doctor even joined in when we were coming up with cool and funny stories to tell people about where my husband’s scar came from. “Tell them you tried to stop a bank robbery and got stabbed! Or you got hit by a car while saving a baby in a runaway carriage!” Not to mention the great Halloween costume ideas we started coming up with: Frankenstein, Phantom of the Opera, a zombie…including a built in scar on his face and neck.

I like to think that, for these doctors who deal with frightened, angry people and death each day, we are a bright spot in their day. Perhaps they talk to colleagues over coffee or to their family over dinner about this hopeful and goofy couple.

Like a pebble in a pond, perhaps our hope and laughter will continue to ripple outward and inspire someone else, and their ripples will reach out to more people. We may not change the world, but, our ripple may, eventually, inspire someone who will. Maybe someday the ripple will even make its way back to us again when we need a reminder to keep going.

I told you all that so I could say to you: Life and work will not always be easy. However, you will find that you can get a lot farther, and it will be much less painful for everyone if you choose to be a pebble in a pond, not a pebble in a shoe.

[Written Oct 3, 2014]