"We don't know, but thanks for asking!"
Sorting out your feelings (which vary from hour to hour), sorting out information related to your diagnosis (which is complicated and overwhelming), waiting for a phone call to tell you when the next step is going to happen (which can take weeks and make you feel like a tiny cog in a big machine), trying to articulate what you need and how others can help (which is hard to do when you can't even figure out what to do with yourself); all of these unknowns and varying states of being make cancer one big confusing waiting game where expectations, reality, and your own thoughts and feelings are as variable and disarming as the Oklahoma wind. In the midst of it all, we hope we can keep our smiling, cheerful, humorous, and grateful response: "We don't know, but thanks for asking!"
That said, we have more to share. It has taken me awhile to feel ready to post an update because this information has come together in bits and pieces over the last three weeks. It's hard to put incomplete information out there when you are still waiting on missing pieces.
On June 24th we had our first appointment with his medical oncologist, the physician responsible for orchestrating Jonathan's chemotherapy treatment. It was a tough visit for a variety of reasons. First, we had spent two weeks post-surgery recovery feeling relatively normal, so the rapid return to reality was rough. Second, we did not immediately click with this doctor like we had with Dr. Cookson, Jonathan's urology oncologist. After meeting Dr. Cookson, Jonathan wanted to go hang out with him. This new doctor is fine, but we aren't going to be meeting her for a drink anytime soon. We definitely had some cultural differences hindering our communication, and I don't think she is quite used to having a patient who is well informed, well researched, and comfortable with questioning her choices. At points the visit was downright tense and awkward!
To top that off, we had to listen to the full list of chemotherapy side effects and potential life long results of the treatment. Granted, Jonathan will likely only experience a small handful of those symptoms, but hearing them all at once is like getting blasted by a fire hose of worst case scenario information. Listening to all of that while looking at my young, strong, handsome husband just about put me over the edge. I had a lump in my throat and tears in my eyes and wasn't sure if I was going to pass out, throw up, or have an emotional breakdown. Stuff was getting real in there.
The visit was made more difficult when she concluded that Jonathan is indeed Stage Three and in the Intermediate Risk category. Although his chest CT showed his lungs are clear of disease (YAY!), his blood tumor markers (particularly his LDH number) were still high enough to push him up into Stage Three. The bummer about this is that it adds a fourth round of chemotherapy, prolonging his treatment an additional three weeks. To add insult to injury, his LDH level was JUST over the line into Stage Three, but the treatment protocol needs to be followed regardless. Jonathan feels like he got a speeding ticket for going 75 in a 70 zone and he's getting the same fine as a guy going 120.
Finally, we were discouraged to leave the appointment without a game plan. She wanted several more tests run to get some baseline numbers before chemotherapy begins, but of course her nurse had to schedule those tests and would call us with his appointment times. He also needed to get a port, a surgical procedure that would have to be scheduled as well. After being inundated with information and expecting a plan for moving forward, it was demoralizing to leave with a "We'll call you!"
We left that visit feeling pretty angry and sad, but after processing with each other and with trusted friends in the field we were able to see that our doctor really does know what she's doing and has given him the correct diagnosis, and that it is ok to not be BFF with your oncologist.
The next two weeks were a flurry of trying to get these tests scheduled quickly; Jonathan wanted to start chemo as soon as possible and all that stood in his way were three tests and a port. He ended up at three different medical facilities in one week just to get all of them done. He had an EKG and echocardiogram on June 30th and a pulmonary function test on July 1st.
Last Wednesday, July 8th, he had a outpatient port installation. This was one matter of contention during his appointment with the oncologist two weeks prior. She insisted on a port, he refused. Thankfully, our good friend Blaire is an oncology nurse and was able to explain to him why a port makes life much easier during cancer treatment. They were able to do the procedure without putting him all the way under, which made recovery much more smooth. He was at work the next day and is just a little sore and feels like a SciFi character with his crazy scars and a lump under his skin. The boys think Daddy's new special button is awesome, of course.
On Friday, the last piece of the puzzle fell into place. Jonathan got the call from his oncologist's nurse, Renee, that he can start chemotherapy on Monday, July 20th. Jonathan will do four cycles of BEP chemotherapy. Each cycle is three weeks long. Here's an idea of how that will go down:
WEEK ONE: Infusions every day, Monday through Friday. He will be at the cancer center at OU for 5-7 hours on these days.
WEEK TWO: Shorter infusion on Monday, 1-2 hours
WEEK THREE: Shorter infusion on Monday, 1-2 hours
He will then repeat that cycle three times with no breaks in between unless his blood counts are too low or he gets some sort of infection that would put treatment on hold. That has him finishing up treatment in early October. At this point, we know he is guaranteed to experience fatigue, nausea, and hair loss. Time will tell what impact these side effects have on his ability to work, but he is going to play that by ear. Obviously Week One of each cycle will have him out of the office quite a bit. We are thankful for his incredibly supportive and flexible team at Mid-Del Vision Source.
So here we are, a week away from chemotherapy. We are gearing up for the long haul, trying to balance getting our lives in order in preparation for a difficult season, while also just enjoying normal life together as a family before we enter into survival mode again. It seems the most difficult stage is around the corner, and we both know that Jonathan becoming more visibly sick will be hard. I'm not sure how to prepare for that or if it is possible to do so.
I have a lot more to share regarding what the Lord is teaching us and how he is providing for us, but that would make this novel of a blog post an epic tale. I will try to get those thoughts into separate posts soon.
As always, THANK YOU for your prayers and for helping our family feel so loved. Keep it coming!
