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.

Just Keep Swimming

If there is one game where all cancer survivors know the rules, it is the Waiting Game. There is never an instant answer. It is never a yes or a no. It has more shades of grey than EL James book and the best you can do is remind yourself that you are not in control of the outcome.

This may seem harsh, but it is true. You walk in the doctor's office not feeling well, or maybe feeling fine but your body and patience are tested as you wait for results that will ultimately change your life forever. 

That is where I am this week. I have been in the clinical trial for 10 weeks. All in all, it has been a walk in the park compared to a year ago with surgery and chemo. There are thin lines between the drug, age, cancer and everyday stress. I am beginning to know the difference and adjust the sails accordingly. Next week, is the cat scan that will determine the course of action for the months to follow. 

The regular cat scan schedule marks the growth of the two tumors on my pelvis. The current drug (Acalabrutinib) is working to keep the growth at bay. Its initial reaction is to cause inflammation as my immune system engages the cancer in a squirmish. The full effect of the drug takes three months. Much slower than chemo, Acalabrutinib, takes time and is the reason it is not used on advanced cancers at this trial stage as mine was a year ago. The study after 10 weeks is now closed, so I count myself fortunate to be among the few who were selected.

This next scan will mark the growth again. Dr. Anderson will assess if there is enough stability to continue the one drug or if we need to add Keytruda, an infusion drug, to help stimulate the immune system further. I am not sure what to wish for, since the addition of the Keytruda means we reset the clock and start the treatment protocol as of day one on June 14. The last three months are wiped off the record and we go again with the weekly testing and blood draws. On the other hand, it means we are pulling out all the stops and wage full out war.

Meanwhile, we wait. Wait to plan for the summer. Wait to plan for seeing a Giants game in August and a Mariners game in September. Wait to plan for a Mavericks concert in Portland. Wait to plan for work. Wait. How will I feel if I am on the new drug? What will the new protocol calendar look like? Wait. Wait. Wait.

Yesterday was the first day I have felt anxious about this process. I can't explain why, except to blame human nature for being impatient with all the waiting. My daughter was disappointed this was not going to be a cure but a maintenance of the cancer. It struck me that I may feel "fine" for the rest of my life. That the measure for how I feel on a given day may be a game of inches. Again, it comes to that thin line between aging gracefully and immunotherapy. But the reality is, once you have cancer, you are forever waiting. Waiting for the other shoe to drop. Waiting for the monthly, quarterly and yearly check-ups to give you peace of mind or toss you in the tornado of medical practice.

We learn to wait with hope and faith. In the infamous words of Dory in Finding Nemo, "when life gets you down, you know what you got to do? Just keep swimming, just keep swimming."  

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.