Eularee Smith
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Entries in Acalabrutnib (1)

Wednesday
Jun012016

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."