Lymphoma Conference

Nate and I attended the Lymphoma Research Foundation's forum this weekend.  The conference was at the Palmer Hotel in Chicago- very cool hotel.  We only attended the sessions on mantle cell lymphoma.  Both sessions had top doctors in the MCL field.  And I had no qualms cornering them after the session and asking questions!  Both doctors told us how they generally treat patients who are in their 30's-40's.  Attending this conference did not give us more answers, but it did give us more knowledge and better questions to ask.

It was also helpful to talk with other people with MCL.  Some of them are 12-16 years out from their initial diagnosis- so encouraging!  Granted, they have all had relapses and more treatment, but it was helpful to hear about the different treatment options available.  And everyone we met was so kind and encouraging.  A couple we only spoke with for only a few minutes told us to move into their house with our 5 kids if Nate ever needs treatment in the Chicago area.  That made me laugh, they haven't met our kids!  (I'm joking, our kids are awesome.) An older man with MCL prayed over us, which was unexpected, but brought tears to my eyes.

A couple of random thoughts after this weekend.  We learned MCL will always be in Nate's body. The goal of treatments is to knock down the levels and put the cancer into remission.  But, no one can predict how long his remission periods will last before the cancer starts up again.  Not going to lie, that is hard to wrestle with.  But, it was encouraging to hear about the research and new drugs being produced for MCL.  And I just want to give a shout out to researchers, that is crazy cool stuff.  That they can develop a drug that attaches to a cancer cell and delivers chemo directly into the cell to kill it? What the what?!  Also, listening to these doctors explain the human body and our cells and how "smart" our cells are, I can't help but wonder, "how can someone not believe in a Creator?" The human body is unbelievable.

So a couple prayer requests.  Nate and I leave Wednesday evening for Mayo Clinic.  They told us to plan on being there 4-7 business days.  That seems so long.  Please pray that our visit is shorter.  Please pray for wisdom- for the Mayo doctors and for us.  Pray for peace about whatever treatment option we decide upon.

Please pray for our kids.  Nate and I have been gone often this past month and now we are leaving for possibly a week.  It is wearing on our kids. 

Thank you for your messages and prayers!

-Stacy

Second Opinion

First order of business- we have a blog! We will not be using carepages anymore for updates. As someone put it, carepages can be cranky and is not always easy for people to access.  You need to go to the 'follow by email' box so that you are notified when we share an update. There are also helping links on the blog. Nate may be in treatment for 6 months, so we need to pace ourselves on the help. We do not need a lot of help yet. But, freezer meals especially are always welcome!

http://demjourney.blogspot.com/

You may share the blog with those who care about our family.

Our doctor put in a referral and Nate has an appointment at Mayo Clinic on November 3. It is a little unclear how many days we will have to stay at Mayo for testing, appointments and so forth.

We had chemo school (to learn about chemo and what to expect) yesterday and this weekend is like a cancer-cation as Nate and I are going to a lymphoma conference in Chicago to learn more about mantle cell lymphoma. We've got to have some humor about this. ;)

Thank you again for the prayers, messages and support.

Prayer Request for this Week

It is hard to know how often to update and how many details to share. But, my friends have encouraged us to share specific prayer requests.

We ask that you pray for wisdom for us and doctors this week. Because Nate has a somewhat rare cancer and because he is younger than the average person with MCL (mantle cell lymphoma), we are going to get a second opinion. Our oncologist is good, but we also want to hear from a hematologist oncologist at a larger cancer center who has treated younger patients with MCL. There are a handful of fantastic cancer centers around the country and any of them would be great. We just need wisdom in picking which center we want to go to. We also ask for prayer about Nate's treatment. We need to discuss with our doctor whether Nate should begin treatment while we get the ball rolling for a second opinion or if he can wait to start treatment until after the second opinion.

Also, the Lymphoma Research Foundation has a lymphoma forum in Chicago this coming weekend. Nate and I are planning to attend as they have breakout sessions about mantle cell lymphoma. We have been doing a lot of reading and researching this weekend.

We also want to thank all of you for your emails and messages. We are not able to respond to every message, but your encouraging and caring words are so appreciated.

-Stacy

Appointment Update

We know that a cancer journey will have ups and downs. You can't really prepare mentally for the down days though. We got some hard news today. Nate has mantle cell lymphoma- it is treatable, but not curable. Most patients relapse within 2-5 years. The doctor talked about a treatment plan. He still needs to research one of the gene mutations to determine which specific chemo cocktail will be most effective. Right now the treatment plan looks like 4-6 months of chemotherapy followed by a 3 week hospital stay for a stem cell transplant.

Nate needs an echocardiogram next week so they have a baseline measurement of his heart function. I guess one of the chemo drugs can weaken the heart muscle. He will also need a colonoscopy at some point to biopsy his colon, as the intestinal issues have been the main symptom and the doctor wants a good picture of what is going on. The results of the colonoscopy will not really change the treatment plan though.

The doctor should call tomorrow or next week with the exact chemo regimen he wants to use and chemotherapy will probably begin next week.

We continue to appreciate your prayers- for healing, wisdom for doctors and us, and God's peace throughout this process.

-Stacy

Telling The Kids

Stacy and I have been putting off telling the kids much about what's been going on with my condition. They know I've been feeling sick recently and have had multiple doctor visits and even some details about what the doc's have been doing to me. We have been very reluctant to use the "C" word around them, not knowing how it would be handled. Especially since we were out of town last weekend. We had a good talk at supper tonight and they seemed pretty unfazed. I know, emotions will surely surface at some point. My mother died of cancer last year at this time, so the memories are still pretty fresh for all of us. It was just a huge answer to prayer that the kids took things in stride and were able to see that this is different and that Dad will get better.

How it All Began

Not being someone who routinely sees the doctor, I was finally pushed over the edge following several weeks of severe intestinal issues. The doc's initial recommendation was to go gluten-free for several weeks (Ugh!). But my blood work indicated a possible leukemia condition by the next day. I have since had a bone marrow biopsy and a lymph node biopsy. This last one was outpatient surgery, so the doc put in a chemo port while I was under. (Two birds with one stone, right?)

It turns out that I have a form of Non-Hodgkins Lymphoma, specifically mantle cell lymphoma. It appears to be affecting the lymph nodes in my abdomen the most at this time.

Not knowing how the Chemo will affect me, it is hard to say what support we could use most at this time. We have a team of friends working on a "helping" system and we should have that up and running soon.

I am continuously supported by my lovely wife and we are raising five awesome children together. I am a normally active person who loves being outside. I work at a nuclear power plant and am currently planning our next refueling outage.