Here we go.

This one is a bit long, but I wanted to include a lot of details in case anyone is curious. It also helps me process it and remember some of the details. Feel free to skip to the prayer requests at the bottom if you want a quick summary/how to pray.

Our First Trip to a Cancer Hospital

On Friday we met with an oncologist at Dana-Farber for the first time. A friend from church is a researcher at Dana-Farber and she was able to get us an appointment in the lymphoma center with a friend of hers who is also a Christian. We were really nervous heading into the appointment. Each new appointment feels like it brings a new series of unknowns and what-ifs.

Central check-in and waiting for our appointment was quite a surreal experience. Sitting there, the realization hit me: everyone is there for the same reason. I never really thought about it before, but when you go to a "regular" hospital, there's almost a feeling of anonymity. You could be there for a broken toe, a concussion, heart issues... Who knows. But being at a cancer hospital, you know why everyone is there - it's just a question of what kind of cancer do you have. In a wry sort of way, I told Kristen, "This must be one of the highest concentrations of tumors in the world. At first it was almost numbing to think about. But then there was a sense of solidarity: cancer sucks, and we're all in this together.

Anyways, everyone at Dana-Farber that we interacted with was fantastic. Our appointment was great and the doctor took over an hour with us, asking questions, listening, sharing knowledgeably and compassionately.

On PMBCLs

The doctor confirmed again that we're looking at a B-Cell non-Hodgkin Lymphoma. We are awaiting some final pathology to confirm the specific type, however all signs are pointing to what's called a Primary Mediastinal Large B-Cell Lymphoma, or PMBCL. The other possibility is a Diffuse Large B-Cell Lymphoma (DLBCL). As I said before, DLBCL is the most common type of lymphoma. PMBCL is a less common type of B-Cell Lymphoma. PMBCLs primarily affect people in their 30s.

It's important to get the final diagnosis, because in just the last 4-5 years, studies have found that the best treatment plan for PMBCLs differs from DLBCLs. We expect to have a definitive diagnosis Tuesday or Wednesday.

The good news about PMBCLs is that they are considered potentially curable (meaning, the tumor can be fully eradicated and does not return). Along with DLBCLs, PMBCLs respond very well to treatment. The doctor could not give us a specific prognosis yet, since we are awaiting final diagnosis, as well as staging. However, she said as an example, in one study, 49 out 51 patients achieved full remission with just chemotherapy (no radiation). The remaining two required additional radiation.

Staging

Along with a final diagnosis, the next really important step is staging. Staging works a little differently for lymphomas and PMBCLs in a couple ways. First, the size of of the tumor isn't really a huge factor. Even though this is a fairly large tumor (they call it a "bulky tumor" if it's over 10cms), that's not that uncommon for PMBCLs. Because they predominantly affect 30 year olds, apparently there is still a decent amount of space in the mediastinum and the organs are relatively flexible. In fact most, PMBCLs are "bulky" before they're discovered, because it's at that point that any symptoms are discovered.

The other significant way staging differs is that advanced staging doesn't quite affect prognosis as much as with, say, lung cancer. With many other cancers, stage IV means it has already metastasized and the prognosis is much worse. With lymphomas, stage IVs are still considered very treatable and potentially curable - though it does of course have some negative impact on prognosis.

That said, the doctor believes there's good reason to think this will be an early stage. While we'll do a full scan soon, there is no sign of any spreading elsewhere in the upper abdomen. My other lymph nodes in the area look and feel normal. The doctor said I'm in very good health overall, and am not showing any signs of advanced symptoms.

That said, we are still hoping and praying for no spreading anywhere and an early stage tumor.

Treating PMBCL

The one demoralizing part of the appointment was learning that the most successful treatment for PMBCLs is a 5-6 day inpatient chemo cycle every 21 days. We were not anticipating treatment to essentially involve being in the hospital for one out of every three weeks. Apparently this is because the treatment involves a 96 hour drip of chemo drugs and there is no safe way to do that outpatient. (If you're curious, the combination of chemo drugs is called R-EPOCH.)

This was the only point where Kristen and I were somewhat shaken. Life over the next 6 months (and potentially longer) is going to be rough. We've been anticipating that. But a week-long inpatient therapy with 15 days between hospital stays will be really tough - on me, yes, but especially for Kristen and the kids.

Of course, chemo will bring with it all the usual side-effects. I will almost definitely lose my hair about 3 weeks after treatment. Treatment (and the days between) will likely have me feeling pretty rough and my immune system will be very compromised. As the doctor put it, EVERY fever is an emergency when you undergo treatment, because the body doesn't have the resources to fight infections.

I'm sure Kristen and I will need a lot of help during this time, so I encourage you to check out our Lotsa Helping Hands and check with Annie there to see how you can help. Family members are taking the lead traveling up to Boston and being present during the treatment weeks, but we will need a lot of help both those weeks and in between.

Where Do We Go From Here?

The doctor wants to begin treatment as early as Friday (October 13th). That means this coming week will be filled with a lot of appointments to stage this and prepare for chemo. Staging will involve blood work (which I did on Friday), a PET scan (to search for cancer anywhere else), and a bone marrow aspiration (to see if there is cancer in my blood/marrow). All of these will take place on Tuesday, October 10. Obviously, we are hoping for favorable results from all of those.

In addition, I will have an echocardiogram - because some of the chemo drugs can be hard on my heart, they have to make sure my heart is strong enough. This will also be on Tuesday. Finally, I will have a "procedure" (not quite surgery) to place a direct line, or port, put in. This makes administering chemo much easier and safer than your standard IV. This will be done on Wednesday, October 11.

How to Pray

• Pray for the staging process. Pray that the PET scan and bone marrow aspiration on Tuesday show NO cancer anywhere.

• Pray for all the procedures in preparation for chemo, including the echocardiogram on Tuesday and the port placement on Wednesday, that they would go smoothly and I would be able to begin treatment as soon as Friday.

• Continue praying that this tumor responds to treatment. In this case, I want to be completely by the book and have this tumor respond immediately to treatment.

• As we approach treatment, pray for Kristen and the kids. This will be a very challenging season for them as I will be in the hospital 1 out of every 3 weeks for about 6 months.

• As always, pray that I would be healed/cured and that I will have many decades to spend with Kristen and the kids, testifying to God's goodness in our lives.