Hurdles

This is week seven of the trial study. For the first four weeks, I was expected to keep one day a week free to wait for repeated blood tests and other screenings. The process is about six hours long and although most of the time you are indeed, sitting and waiting in the doctor's office, it is taxing on the psyche. 

You arrive and the phlebotimist, aka blood sucker, draw several vials of blood for testing. You are asked not to take your morning dose of the drug until this is done and the doctor has had a chance to review the results. You wait. The nurse calls you in and you are weighed, vitals are taken and the doctor comes in and asks a series of questions. For the most part, it is "how are you feeling" but there are a few pointed questions, like is this or that the same or different from when you started treatment. He reviews the test results with you and then you are taken to a treatment room where you take your morning dose of Acalabrutinib. Over the next 90 minutes, blood is drawn every 30 minutes. Then you progress to an hour, and then two hours. You have an EKG and your day is done. In the two hour window you may leave and return, but other than that you sit and wait.

If you have ever had multiple blood draws (total of six over the six hours) and you are a chemo survivor, you know eventually your veins cry uncle. It becomes painful and you look like a bruised pin cushion by the time they find enough places to draw from a vein. They do not do it in the same vein each time, so both arms are assaulted and your neck has a kink in it from looking the other way. Although I am not technically doing anything, I am exhausted by the end of the experience and ready to go home. 

After four weeks of this, you graduate to a three week routine. Throw a CT scan in there for good measure and you have my past seven weeks. The CT scan was not good but it was expected. This first scan shows that there is inflammation in the pelvis. This means the immune system is fighting bravely and although the hope is that it will be the victor, at this stage, the cancer is most likely overwhelming it. It takes about three months for the drug to be at its peak performance. This first CT scan is therefore an indicator that there is still a long way to go. 

The next hurdle is a second scan scheduled in four weeks. This is a more accurate depiction of where we stand. If there is 20% growth in the tumor, then I will be added to the second study and given Keytruda in addition to the Acalabrutinib (I warned you the difficulty here would be in the pronunciation). The Keytruda will be administered as an infusion, similar to chemo. We then hit the reset button and the study begins again as if the past three months never happened.

For the next three weeks, I am on my own, although the doctor keeps a close eye on symptoms I may experience in the meantime. I feel like my body has finally adopted this new way of life. The symptoms, mostly gut related, have leveled off and feel predicatable and manageable. There are no highs and lows like chemo. I am still losing weight and my appetite is not what it was, but I feel good and am slowly getting back to my exercise routine. I am grateful for small blessings. The next hurdle lies ahead and will hopefully show my body is whipping cancer into submission.

For all of you survivors, caregivers, friends and family of loved ones going through cancer treatment, be positive, be brave, be optimistic. The hurdles may seem insurmountable, but for every one we jump, we are that much closer to the victory lap! 

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.