Change of Plans

If there is one thing life is full of, it's change of plans. What's that they say? Life is what happens while you are making plans. I have my schedule full of Plan B, C, D, that now I am resorting to XYZ!

CT scan results this week show that I have crossed the threshold of progression to keep me on the drug study. As of Tuesday, September 6th, I am officially off the study. To say I am disappointed would be an understatement. I am struggling with feelings of failure and apprehension. Trying to keep my apologies to a minimum as I find myself with an overwhelming sense of letting my famiily, my friends and my readers down. I present a picture of strength and warrior like stamina. It seems there are larger chinks in the armor than I care to admit.

Enough! This is not a setback. It is a change of plans. Although discouraged, I will take this change of plans as my own progression forward. The Keytruda did not work for me. My doctor believes it kept the cancer in check, but not enough to force remission. Hopefully there is some good evidential research that comes from my experience that will indeed move immunotherapy in the right direction for ovarian cancer. But right now, I have done my bit for cancer research and need to clear the decks for this new plan. Chemo.

After Dr. Anderson said, you are off study, all I heard was "blah, blah", similiar to what Charlie Brown hears when the teacher is talking. He did, however, reassure me that once he sits down with me and shows me the pictures, he is confident that I will see that this is not a bad thing. Spoken like someone on the other side of the chemo chair. On the other hand, for whatever reason, I am feeling better than I have in months. Whatever else happened in the study, for that I am grateful. Perhaps it was what I needed to get back into the chemo chair. Time to heal. Time to believe. Time to gear up for plan XYZ.

So stick around. I have much left to do and have every intention of showing Cancer this is not over by a long shot. To Jimmy Carter and for all those that the drug has worked successfully, thank you for blazing the trail. Immunotherapy is the new face of cancer. For our children's children perhaps, but the fight is clearly moving in our favor.

Checking out the blessings today...I can have grapefruit juice again! Bought a case and using it to celebrate! Antacids are back on the medicine shelf! No CT scans every 6 weeks! There are moments when you reflect on what is good about game plans changing. That is my new focus.

My friend, Ellen, sent me this t-shirt, not knowing what my day had been. I wear it proudly, ready to do battle with my nemesis. Now, let's roll up our sleeves and get on with it.

When Fine is Good Enough

The other day a friend came up and asked how I was doing. Before I could answer, she smiled and said she wondered how many times a day I heard that question and that I was probably sick of answering it. One of the hardest things about cancer is putting on that brave face every morning as if it were part of your make-up routine. You develop a pat answer to dodge the question but more to make the person feel good when they walk away. My stock answer is "still standing" or "everyday out of bed, is a good day."

It is incredibly hard for people to walk the delicate line between, I want to know how you are feeling but I am afraid to know how you are feeling. Even as a cancer survivor, I still question every little ache or pain and if I am in pain, I don't want it to affect those around me, so why would I tell someone how I feel. My friend, Heidi, called me stoic. It sounded cold and isolated. But I understand that as hard as it is to ask how someone feels, it is just as hard to answer that question, ergo the stock answer, rather than admit our vulnerability. 

The clinical trial is going well, from my perspective. There are definite changes to my body but since I haven't felt on top of my game for over a year, it is a bit of a process of elimination to know what is from the trial drug, the cancer, stress from work and caregiving aka LIFE! It is important to Dr Anderson that I peel away the layers of life and focus on any changes that are directly related to the drug. My gut literally tells me, the changes are real, hopefully temporary and although a daily distraction, not nearly as devastating as the chemo.

I have found wearing loose clothing helps. Dr Anderson believes that some of the gut pain issues are related to the original surgery healing process and not related to the cancer or the drug. It was the same after my mastectomy 25 years ago. Anything pressing or touching against the surgical area is either painful or very uncomfortable. Short of being naked, which believe me would not be an attractive look on me, I am trying to find clothing that eases me through the work day, until I get into the comfort of a pair of sweats.

My appetite is down and a general sense of fatigue, but not to the level of slowing me down. I am more aware of it and try to eat sensibly and more often, and come home for an hour or so for lunch to rest. For cancer survivors, the word "fine" is a good definition for the coping skills we have learned to acquire. We are fine. So please, don't be shy about asking us how we feel. There is no such thing as denial for someone going through cancer. It is a daily preoccupation and you - friends, family, co-workers are all welcome and loving distractions. Sometimes fine is good enough for now.

It is okay to be vulnerable. If you have questions or know someone who is struggling, feel free to leave a comment. We are in this together.

Every Journey Begins With The First Step

After hearing the news that the cancer was back, I had a good cry and then tried to listen to the "good" news Dr. Anderson was telling me. The take-away from his news was that I was about to embark on a new journey and it was my choice of paths to take.

The first path led to chemotherapy again. What little was coming through the screaming fit in my brain, was that it would do the job, but would most likely be a chemo maintenance program. This sounded more like looking over my shoulder for the rest of my life, not to mention being sick and bald again. A thorny path, indeed.

The second path was an anti-hormone drug. Not much of this information sank in, as it too, sounded more like a way for me to keep my eye on the rear view mirror than looking ahead to the future.

The third path was the clinical trial. Anderson talked about the Jimmy Carter drug, the advances in brain, lung and melanoma cancers, along with how I was the perfect candidate. But what resonated with me and finally broke the sound barrier in my brain, was the word immunotherapy. Finally, a drug that was saying it was there to HELP my body, not destroy it.

I was given a stack of paperwork to review and two weeks to read and sign. This always strikes me as odd, because if you read through what could happen while on this drug, why would you ever sign? Do you notice how fast they read through all the disclaimers on the TV ads for certain drugs? Again, why would I take this knowing all that could go wrong? Doesn't it seem more prudent to put them in a graph or something colorful that has the shimmery part be the good news? Oh well, that is another blog post.

Although I did my due diligence and read through the entire stack before signing my name, I told Dr Anderson, I was ready when he was to start the trial. It began with removing the obstacles from the path.

Obstacle #1 - Insurance. I had to switch companies from Medicaid to Trillium. This was not an FDA approved drug and therefore was not covered by a federal or state subsidized insurance. The paperwork was approved but Trillium didn't cover it either. We were at a standstill. The cost of the treatment was $20,000 a month.

Miracle #1 - Oregon just passed legislation that all insurance companies must cover the cost of clinical trials. The cost of the trial itself is covered by the study, but any resulting issues must be covered by your insurance. Remember that list of all that could go wrong?

Obstacle #2 - Tumor size. Mine are VERY small and attached to the pelvis wall. To qualify for the trial they had to be in a certain size range. Hard to qualify this as bad news, but it was an obstacle.

Miracle #2 - Combined the tumors met the criteria...just barely. I'm in!

My pack is filled with boredom busters, per the doc's orders. My biggest challenge now is to learn how to pronounce the name of the drug. A rose by any other name would smell just as sweet to me right now. I am on a new adventure. Taking the pills every 12 hours for the next two years, with regular screenings every Tuesday to begin and then every three weeks for the duration. I have my own room, a desk of sorts and a fabulous view from my Tuesday office window.

Taking that first step was a no brainer. Hoping the path, albeit uncharted, is passable. 

Feel free to leave questions or comments. We are on this road together.