Owen discovered yesterday that the hopeful outcome of radiation therapy as the final step in ridding him of his cancer, now seems rather grim. The radiologist looked at his scans and determined that the location of Owen’s tumor is in such a delicate place in Owen’s heart, especially after the heart itself has been so ravaged by the surgery and the chemotherapy, that he feels radiation would only damage it further. It is his professional opinion that the positive benefits on the cancer do not outweigh the negative effects it would have on Owen’s heart.
“You only get one heart, Owen,” he said.
So he is recommending Proton therapy instead, a newer form of treatment similar to radiation but using some sort of protons instead (hence the name) and supposedly much more gentle. So while that doesn’t sound bad, here is the stressful part. There is a good chance our insurance won’t cover it. And without insurance, my research shows it will cost roughly $30,000. This is money we do not have.
Furthermore, given the scans look good on the CT (We havent’ had a more accurate PET scan yet), it makes me wonder if it is even worth it. Yet, all the research I’ve done, which has included looking at medical journals written within the last year on Thymoma shows that for stage 3 B2 Thymoma, radiation combined with chemotherapy yielded much more success when preventing reoccurrence. Without that double treatment, likelihood of reoccurrence for Owen’s type and stage was very high. But in the end, does it even matter if it’s Proton therapy instead? Where’s the research on proton therapy for Owen? In other words, if the proven radiation therapy is not realistic for Owen, is it worth $30,000 of money we don’t have to pay for another treatment where there is no record or research done on its effectiveness for Owen’s type of cancer and stage in the first place?
So what to do?
Owen is most frustrated by the location of the Proton therapy location. It is in La Jolla, which is a good 40 minutes from our home with typical traffic. He is expected to go every. single. day. For 6 weeks. That is 40 minutes there, about an hour while there, and then 40 minutes back. That is basically 3 hours everyday that cuts out of his work time. And we’d have to find a sitter every morning to take the kids to school in order to get him there on time. At this point, chemotherapy was easier on his work schedule. So he is not happy. Neither am I.
My prayer is that God be guiding all of this. I don’t want Owen to beat cancer only to die of a heart attack. So if radiation is too dangerous than I don’t want it either. Chemotherapy has already ravaged his heart. He is getting palpitations everyday and has been enduring pain in his heart ever since his last chemotherapy treatment 3-4 weeks ago. He is still dealing with other negative effects on his body including tinitus in his ears, tingling and numbness in his fingertips and limbs, and general weakness.
I don’t want his heart issues to worsen. But I don’t want him to get a likely reoccurance of thymoma either. The survival rate for that is much worse. Over the last year, Owen and I have grown so much closer. I am more in love with him than ever and so the fear of losing him, is all the more heart-breaking to me. I want my husband to be with me for the rest of my life. And I want the time we have together to be healthy. Anything that disrupts that or threatens that fills me with anxiety.
If God does not allow proton therapy to be something the insurance pays for, I sure hope he is allowing that because he is telling us he’s got this and that Owen will not be getting a reoccurrence and so we don’t need more treatment. Please pray we have ears to hear God’s voice in this and not our own fears or itching ears.
Finally, after all of this–I am having health issues. And right now, all of our health/medical money is going toward helping Owen. And my issues just seem to be blown off by the traditional Medical establishment. As I seek alternative treatments, I recognize my dire need for a Naturopath, but that will come out of pocket since my insurance won’t cover a Naturopath. Until we get Owen settled though, I am trying to treat myself for my health issues with diet changes, supplements, etc. And I’m just praying that God bring me relief. I don’t want to get too into it until I know for sure if I am right. But I’ve struggled with a sensitive gut for years and finally found some relief when I cut down my dairy significantly. But now it seems that I’m developing more food sensitivities and my hearing issues aren’t improving that much. And on top of that, I had a tubal ligation a year ago when my daughter was born (4th c-section) and I’m starting to develop some issues that I believe may be complications and side effects to that. I’m just praying that God be guiding me through my journey through this process, show grace to me as I seek to treat myself and help provide me the answers needed to heal. I am going to be 36 years old and want the second half of my life to be healthy as well, not burdened by pain and aching all the time in my belly. I’m crying right now just thinking about it.
Lord, please bring me and my husband relief!
In the end, despite the outcome, I am reminded of a song Alanis Morisette wrote years ago that made such an impact on me. I will post the lyrics down below.
That I would be good, by Alanis MorisetteThat I would be good even if I did nothing
That I would be good even if I got the thumbs down
That I would be good if I got and stayed sick
That I would be good even if I gained ten poundsThat I would be fine even if I went bankrupt
That I would be good if I lost my hair and my youth
That I would be great if I was no longer queen
That I would be grand if I was not all knowingThat I would be loved even when I numb myself
That I would be good even when I am overwhelmed
That I would be loved even when I was fuming
That I would be good even if I was clingyThat I would be good even if I lost sanity
That I would be good whether with or without you