Living in Denality

I am pretty excited to have made up my own new word. Actually, I’m not really sure if it’s new, as I didn’t check the copyright, but we’ll just go with it. I made up the word “denality” to attempt to describe what it is like to be relatively healthy, but know you ultimately have a terminal illness that will eventually kill you. So my word is a combination of the words “denial” and “reality.”

To accurately understand the state of “denality,” you first have to understand what a cancer patient’s definitions of denial and reality are, because they are slightly different than the average person. In cancerland, denial is a moment, hour, perhaps even an entire day when you forget you have cancer. These are rare, but do occur. Reality is a moment, hour, and often entire days when you absolutely cannot escape the fact that you have cancer. Here are some examples. Recently, I was in Mexico, laying in a lounge chair, listening to the crashing of the ocean waves and watching the beautiful palm trees sway in the breeze above me. I had a frozen beverage in one hand, a good book in the other, and had my husband in the chair next to me. This was a moment of complete and total denial. On the opposite end of the spectrum there is reality. This is when I am getting a PET scan, infusion, or taking my pills. These are inescapable moments of reality, when there is no denying that I am, in fact, a cancer patient.

Most of my time is spent somewhere in between denial and reality…..or “denality.” I can very quickly move from one to the other and back again in a matter of seconds. The arrow indicating where I am moves rapidly along the spectrum. One minute, I’ve returned from my fabulous trip to Mexico, the next, I am reminded of a doctor appointment the next day. One minute I am at the Convention Center with my fellow educators celebrating my profession, then my cell phone rings, and the genetic counselor is calling to give me my results. I wake up looking forward to the day, then am quickly reminded of my condition as I take my daily medications. It’s rather surreal. I am glad that there are still moments when I can bask in denial, but I am always shaken at how abruptly they are snatched away.

Denial comes in lots of ways. I get busy with work, chores, planning a vacation, reading a good book. Reality hits mostly during doctor visits, infusions, talking to my other stage four friends. It may sound like a horrible way to live, but just as with most life situations, you adjust. After twenty seven months, I think I have adjusted. It’s not always easy, but I have learned to accept that there are going to be days of denial, days of reality, and mostly days of “denality.” For right now, there is a good balance. I think my fear comes when I think about the future and the days of reality far outweighing the days of denial.  It’s not so much if the time will come, but when. Will I get another year? Two years? Ten years? The toughest part is not knowing.

I was recently reminded of a prayer that I used to say daily, that I think probably fits my situation better now than ever before. “God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and the wisdom to know the difference.” I said this prayer at a time in my life when things were chaotic, out of control, and I was very unsure of what the future might hold. I think back to that time. Although the situation was so different, the fears I face now, are the same in many ways. I have resumed saying this simple sentence on a daily basis. It really sums up just about everything I can ask for.

So now that I’ve inspired you with my vast wisdom (denial!), I will update you on my health facts (reality!)

I got the seal of approval from my surgeon on June 12th. I have healed nicely from my hysterectomy and was cleared to resume normal activity.

I saw a urologist for the first time ever on June 27th to check “something that looked like a bruise” in my bladder that they saw during my surgery. Although the procedure to look inside my bladder was not the most fun I have ever had, it did confirm that there is nothing in there to worry about. Thank goodness for that fact.

I had a PET/CT on June 9th. This yielded both good and bad news. The good news is that whatever showed up on my T11 vertebral body on the March scan, resolved and was not seen on this scan. Scans are very sensitive and one of the drawbacks is that they often pick up things that are completely benign. The bad news is that the activity on my ischial tuberosity (basically my butt bone- for lack of a better term) is still there and the activity level increased. So, more than likely, this is the cancer and the doctor felt it was time to change my medication.

I began taking the new medication (Arimidex) on June 17th. The first week was side effect free. I felt no different than I did on the Tamoxifen. Of course I was in Mexico, so perhaps the denial kept the side effects away. The day we returned from Mexico, I noticed a very “heavy” feeling in my legs and some joint pain. At first I thought perhaps it was just the long plane ride and the sudden change of elevation. But, I have been home for a week now and the symptoms are still here. So I suppose it’s time to face reality and call it what it probably is-a medication side effect. Hopefully I didn’t catch some deadly form of malaria in Mexico. It isn’t debilitating and I have to say that if this is as bad as it gets, I will take the pill for however long it works! Let’s just hope this really is as bad as it gets.

I will have a repeat PET/CT scan on September 8th to see if the new drug is working. If the new spot activity goes down or goes away, then it is considered to be working. If the spot grows or new spots show up, then it has failed and we move on to a new plan.

My genetic tests were all negative. I think they tested me for every known genetic defect, but nothing was found. The genetic counselor is so flabbergasted by the whole situation that she wants to do more tests. With my family history, I don’t think there is any argument that my problems stem from genetics. I just don’t think whatever genetic defect I have, has been discovered as of yet. But, try telling them that and they get defensive. It just HAS to be something that they have already discovered. I guess I’m not the only one that has moments of denial!

So that is the current reality and I am certainly thankful that I still get to stay in “denality” most of the time! Let’s hope that “denality” gives way to complete denial as I leave for what is sure to be a fabulous trip to Alaska in just 3 days!