It is 17 months since my diagnosis today. The 8 treatments of stereotactic radiationtherapy are behind me, and I am slowly getting stronger or rather less tired. Every day a little. Bit by bit. This afternoon I was walking in one of my favorite areas, enjoying the smell of the pinetrees, the beautiful scenery and the sun on my skin. And then I saw the tree. A tree that I have spent many hours with, sitting in its shade relaxing, walking past it, and when I was so sick and weak, one and a half year ago, it was the goal of supported walks and I remember being afraid it would be the last time I would ever lay eyes on it again. Today I passed it at the end of a two hour walk. I looked at it and all of a sudden I heard a loud refrain in my head…..
In between February 17 and May 19 this year the tumormarker CA 19-9 has risen from 23 to ca 460. CEA value is now 24, which is higher than it has ever been. Another CT scan has been made on May 20, and this will be thoroughly viewed, for if any new spot is found in addition to the met on the liver, the cyberknife or stereoteactic radiation treatment on the liver is off. A vacuum cushion has been prepared for me already, shaped by my own body, for cyberknife is precision radiation therapy and you need to lay perfectly still for an hour. Clips (fiducial markers) still need to be placed on my liver, so the cyberknife machine can lock in on them. In April the decision was made that I would get this treatment, we hope to start early in June.
The last few days I have been confronted several times with the amount of effort and money that is ‘put into me’ to help me stay alive. It got me thinking about value of life. Not about intrinsic value, but about added value.
The CT scan showed a (1) metastasis on my liver. When we looked back on older CT-scans for that particular spot, we found that this met probably started to manifest itself already in May 2013. But it was very small and vague and we just never noticed it. While the primary tumor slowly shrank, the met slowly grew. It grew from 1.3 to 2.2 cm in between December and March, while my CA 19.9 was under 30 and I was travelling. The plan is to treat it like a local problem and see if we can remove it. So I will get another round of radiation therapy, this time on the liver. Hopefully soon. No more hesitation about radiation therapy at this point, I welcome the treatment.
Yesterday I went to the hospital for my 6 weekly blood check and found out that my tumormarkers are up again. It took me 6 months (from August to Februari) to get the CA 19,9 down from 80 to 23, it took the cancer-cells 6 weeks to get the CA 19,9 up again to 103! A formidable foe. I am feeling so good, it took me and my doctor completely by surprise, even though we have always known this could happen.
No more pondering on what perspective to take for the moment, and the initiatives I took during the last weeks toward work and research are on the back burner for the moment, for I am pulled back into the survival game. My main project is project Life again. I had hoped that my food regime of no sugars, no refined flour, no meat, mostly (organic) vegetables etc etc, with supplements such as curcuma (turmeric) and bitter melon and my ayurvedic medication would be enough to keep the cancer-cells dormant for a few years (yes, why not dream big!), but alas, it lasted only a few months. I am sure that my oncologist and radiotherapist/radiation oncologist will tell me that it took exactly as long as their treatments are supposed to have their effects. It is not even 6 months after my last radiation session, and 8 since the chemotherapy ended. Tomorrow the CT-scan, and in a week I’ll know if I am still mets-free, which will give me more options.
Something I am hitting on, now that I am feeling so well, so strong and healthy for almost 4 months, is a choice of perspective. And that is not a trivial issue.