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.