Detour, There is a Muddy Road Ahead

If you are old enough to remember this song, then welcome to the last six weeks of my life. We went from change of plans with the Keytruda, to running off the muddy road of tumors, chemo, and kidney stent. The road was dark and at times scary with multiple trips to the hospital for treatments to stop the progression of the cancer and to keep me from having to deal with a colostomy.

I have to say that the last six weeks have been in pure survival mode. I took a months leave from work. Everything was geared toward how does one survive such pain, and once the pain was under control how does one help the body to survive the horrors it has been through. Food was not my friend. The only constant was whatever went in, was bound to come back up. I lost 20 pounds and found myself confined to bed and depending on family and friends to take care of me. Quite the twist and lessons to be learned.

Fast forward and I am finally beginning to feel like we are leaving survival mode and taking the first steps into healing and recovery. It has been a long and challenging journey to be here today. I went from having a no meds list when I went into a doctor's office, to several pages of everything but the kitchen sink. Bottom line, patience, good doctoring and the belief, cards, flowers, food, prayers that screamed just say "NO" to cancer, that put me back on solid footing and the road ahead although still uncertain, looks clear.

Next stop, I am having a subcutaneous port implanted tomorrow morning. I have resisted this step for the past two chemo rounds. My veins are no longer cooperating and having to be poked several times on both arms to try and get an IV for the chemo and fluids, has become a weekly challenge. With blown veins, and the painful experience of multiple pokes, I decided to let go of my 25 year old stereotypes and listen to my doctor. After showing me the port, how it is inserted and the fact that my veins were screaming for help, I find myself at another cross road. Should breeze through this one and will see you on the other side to fill in the blanks of the past six weeks. Climb aboard. This ride is bound to get better.

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."  

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.

GET BEHIND ME, CANCER

It is dawn in the Willamette Valley. I am packing my bag to begin a new journey. Last year I was at war with cancer. From surgery, through chemo and then recovery, I battled nine long months. Despite my best efforts to put the experience in my rear view mirror, cancer is not done with me yet.

Ovarian cancer is a stem cell cancer. Doctors know it will return. It is a matter of when and where. For me, it is two very small tumors on my pelvis. I am the lucky one. Most women experience reoccurence in three to six months. I made it to nine. To say I was disappointed, would be an understatement. To say I am afraid, would be a lie. Though I am still weary from the battle, here I am preparing to wield a new weapon, plotting a new strategy and once again emerge victorious. This time the outcome will be different.

As luck would have it, my Gynecological Oncologist, Dr. Charles Anderson, MD, is conducting a national study on the effects of a new immunotherapy drug, Acalabrutinib, on recurrent ovarian cancer. This clinical trial is a Phase 2 proof-of-concept Study of ACP-196 and in combination with Pembrolizumab (also known as Keytruda, popularized by the name Jimmy Carter Drug). The study has been done on aggressive cancers, such as brain, lung and melanoma, hence the name Jimmy Carter Drug, as his success story was one of the first to be part of the study.

A computer flip of the coin, placed me in the group study with the single drug, Acalabrutnib. The drug is in capsule form and I take one every 12 hours. A daily diary charts the drug, the time and effects. The study is for two years and my cancer is monitored through weekly blood tests, along with scheduled screenings. If the single drug does not produce the intended results, the second drug, Keytruda, will be introduced in combination with the Acalabrutnib, as an infusion every three weeks.

I pack confidently for the journey, ready to blaze a new trail. I invite you to follow me as I post weekly on the new dawn of this cancer battle and what this immunotherapy will reveal for future cancer treatment. Feel free to ask questions, leave comments, laugh, cry and share this experience that may prove to be the answer for so many women following behind me, waiting and hoping that the path for their recovery will be cleared.