Update: Waiting & Watching

An update on Carol – thank you all for your prayers!

We met with her oncologist on Monday afternoon, and he gave us the same advice that he had given last month: that we should not do any systemic treatments like chemo at this point, and instead scan regularly. If/when something reappears in those scans, she can start systemic treatment at that point in time. And because of all of the exhaustive testing that was conducted in the past few months, we can be more confident in the treatment’s effectiveness.

We had been thinking about this situation for a while, and told our doctor that we felt comfortable with this decision. Although it is very different from how they treated her last time, this seems like a better way of doing things. I feel like this new approach reflects all of the new treatment options that are available, which is encouraging. Amazing that in just seven years, triple negative breast cancer went from a nearly untreatable condition to one where we have the luxury to wait and choose different treatments!

So Carol will be going in for a scan in October to see if she has any evidence of disease. If there’s an issue, she’ll start some form of treatment. If she’s clear, she’ll have another scan a few months after that…and another one after that…

…And that’s the only discouraging part of the news, that there is no foreseeable “end” to this process, where she will be absolutely done with treatment and we can move on with our lives. Instead, we’ll be caught in this watching and waiting phase for a while…years?

But this is not so bad, not in the larger scheme of things. Far better that we should have to watch and wait rather than feel like we are cornered in a desperate situation. And rather than moving on with our lives after treatment is completed, we’ll just have to choose to move on with our lives right away instead!

Thank you everyone – we are so blessed and encouraged by your love and your prayers!

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Update on Carol, 7/19/16

Carol finished her last round of proton therapy last week, and everything went very well. She did not encounter many side effects besides some chafed skin and a sore windpipe. We are so thankful for this amazing new technology!

We went to the doctor yesterday, and were hoping to hear something concrete, specifically which systemic treatment would be effective and when we would be starting. But the recommendation that our doctor was very different and a lot more difficult for us process. First the good news: CT scans have shown that Carol has no visible signs of disease, meaning that the cancer has not spread – what a huge relief that was to hear! But then, he went on to tell us that he advises that we wait until the cancer progresses further to begin any additional treatment.

This really threw us off. When Carol was last diagnosed, the standard of care was to treat triple negative breast cancer as quickly as possible, with every treatment possible: surgery, multiple forms of chemo and radiation. Because of this, we were always told to start treatment without delay, otherwise the cancer would have more time to spread throughout the body. And what our doctor was telling us this time, to essentially wait until it spread, went against everything we had heard before.

But he explained that there were reasons behind his advice. First, Carol’s body needed more time to recover from proton therapy before starting any kind of treatment, especially chemotherapy. But also, since Carol doesn’t have any visible sign of disease elsewhere in her body, he doesn’t know if there is cancer to even treat, nor would he have any way to measure effectiveness (as in tumors decreasing in size). Chemo is a powerful and dangerous treatment to use when its effects are not clear. Lastly, he wants more time to perform even more advanced tests on the tumor, including sequencing both the DNA and RNA of the tumor itself. Those results might lead to even more specific and effective treatments than chemo, with far less side effects.

This has placed us in a tough spot because we are trying to decide between two uncertain paths. On the one hand, we can see our doctor’s perspective. Carol doesn’t have any visible signs of disease, and so there is a real question of what chemo would be doing – how would we know it’s actually treating anything? How would we measure if it’s effective? Better that we should get additional testing done, wait to see what happens with the disease, and if it does progress, have all the weapons ready to use at that point.

But at the same time, all of our doctors prior to this have painted a very bleak picture in terms of triple negative cancer, that because it is so aggressive, you have to throw the kitchen sink at it, and without delay. Their perspective would be that even if you can’t see sign of disease, you should assume that it’s there, and spreading. And so even with a clear CT scan, they would still prescribe chemo as a sort of pre-emptive, scorched-earth strike against the cancer. And as difficult as that would be physically on Carol, there is a kind of bizarre peace of mind that comes with knowing that you are treating a dangerous disease as aggressively and quickly as possible.

We’ve spent a lot of time talking through these options, and we don’t really know which way to go. Both make sense, both come with real risks. Neither is certain. But at this point, we have to wait for at least a month and a half for Carol to recuperate from radiation. That much is clear, and so that is what we are going to do. Past that, we haven’t made a decision.

I really wish the news was more definitive, not just for us, but for all of you, our friends and family. In fact, that was one of our primary concerns in talking this over: “What about all of our friends? How do we explain this to them? Does this mean they have to walk with us for another year instead of another few months?” We feel badly that we can’t give you more definitive news at this point…

But we’ll do our best to guide your prayers and support: first and foremost, thank God with us that Carol’s cancer is contained at this point and has not spread! Please pray that Carol’s cancer would not progress further, at all, for all time. We still believe in a God who can do that in a second, if it’s His will. Pray for our doctor, that the tests he is going to perform would provide a clear path forward. And pray for Carol and me, that God would grant us his wisdom to know what we should do, when all human wisdom fails.

We are so grateful for you all!

The Start of Treatment

***A very happy birthday to our youngest daughter! An update as Carol gets ready to start treatment:***

Thanks to everyone who gave to the GoFundMe fundraiser – we were able to exceed our goal of $20,000 in less than two weeks! Carol and I are so humbled and encouraged by your generosity and support. All of our financial needs should be covered at this point, but we’ll let people know if things change, especially when we know what systemic treatment Carol will be undergoing.

Carol begins her daily proton therapy treatments this Monday, which will go on for three weeks. Thankfully, proton therapy has very few side effects. Instead, the impact is really on our schedules as Carol will have to be out of the house three hours of the day, one hour to get there, one hour for treatment, and one hour to come back. But thankfully I am able to decrease my hours at church in order to be home to take care of the kids when Carol is out for her treatments. I am incredibly thankful to have a caring and generous church that allows me such freedom, I know that it’s a privilege that not everyone gets to enjoy…

Even though we’re really just getting started in this difficult season, Carol and I are excited and relieved that treatment is finally beginning since it’s already been two months since she was diagnosed. Some ways you can pray for us during this season:

  • Pray that the proton therapy would be effective in completely destroying the remainder of the tumor. Also pray for Carol’s doctors to have wisdom as they determine what kind of treatment will follow afterwards.
  • Please pray for Carol, for the physical energy to go out for daily treatments after a long day of taking care of the kids. Also, pray that she would spiritually and emotionally sustained by God during this time.
  • Please pray for the kids, as they transition to a summer schedule and would have fun as they attend various summer programs and camps. Pray also that God would be with them as they process their mom’s sickness, and they  would be gentle on their dad as he takes on a larger role in taking care of them on a daily basis.
  • And please pray for me (Peter), that I would be able to balance the load of helping out more at home while still leading and preaching at the church.

A New (Temporary) Calling

A little Simpsons reference...

The Riverside had its final service yesterday, and it was a remarkably blessed time for us, especially for me.  In the midst of the bitter self-recriminations that I have been muttering to myself, it was nice to hear that actual and lasting good was accomplished there.  There was a moment during the service where I realized that I should not be disappointed with how little we accomplished in two years, but instead, be amazed that so much was accomplished in such a short time.  Maybe not much on paper, but a lot in the eyes of God.  Nevertheless, as of January 22nd, the Riverside is no more and for the second time in my adult life, I find myself in-between jobs – exactly what am I supposed to do with myself until then?

Well…I think I’m going to write a book.
Continue reading “A New (Temporary) Calling”