We didn’t see this coming...

“Geez, my back hurts.” This has become my catch-phrase over the last couple of years. I’m pretty stubborn (yes, I can imagine that most of you reading this are thinking “Pretty stubborn? More like as stubborn as a mule.”). As I was saying, I’m pretty stubborn so I don’t usually let little things like back pain get me down. Not until a couple of years ago anyway. At some point, the pain became so prevalent and constant that I sought out medical help to figure it out. The combined efforts of my oncologist, a couple of specialists he sent me to that ruled out a variety of causes, and our primary care physician couldn’t find a cause. Finally, our primary care physician suggested that I lose weight because he felt that I would improve when my body was healthier and more fit. 

My desperation to get rid of the back pain fueled my resolve and I did as he suggested. In a little over 10 months, I lost 65 pounds. It was a difficult lifestyle change because if you know me, you know I LOVE breads and desserts. Still, my back hurt, so I gave those things up. After I while, I realized that I felt great about fitness and my new choices, I learned that I love to exercise, and, my back STILL hurt!!!

Back to the doctors I went. This time, I was referred to an endocrinologist who ran a ton of blood work and a spinal orthopedist who looked over X-rays and MRIs of my back. I continued using yoga and exercise to ease the back pain in short term bursts, and my oncologist stuck with my regular 3-month visits. 

At one of those visits, Dr. Lemon found that he could feel my spleen during an external examination of my abdomen (in case you’re wondering, that isn’t normal). He ran a PET scan, but all it indicated was that I have a “HUGE” spleen. Meanwhile, the spinal orthopedist and my primary care physician both found evidence of degenerative discs in my spine along with pinched nerves. That could be the answer to my STILL painful back. 

Suddenly, though, the spleen had everyone’s attention. I didn’t even know what a spleen was before this, but I did know that you aren’t supposed to be able to feel it easily from the outside. Dr. Lemon and the endocrinologist ordered even more blood tests (don’t worry - new blood cells are regularly made by the body). Finally, after reviewing all of the results, the endocrinologist told me that I needed to go and see my oncologist and discuss the possibility of Lymphoma. After telling me three times in a 20 minute visit, he thought I got the point. He sent his notes and all of his test results to Dr. Lemon and I headed to that office. 

That appointment was a little surreal. The jovial, somewhat ascorbic whit that I enjoy engaging with during my appointments was missing. In its place was a solemn, very serious demeanor. (I must say that I don’t enjoy that one as much). After reviewing all of the other doctor’s tests, notes and research, comparing them with his own, and looking at a few additional factors (I keep losing weight even though I’m not even trying to any longer), Dr. Lemon ordered a bone marrow test. This would be a definitive way to ID or eliminate the suggestion of Lymphoma. 

That was two weeks ago. A week later, I had the exam. This past Wednesday, Jim and I were given the news that I have Lymphoma evident in my bone marrow, in my blood (more tests had been done) and presumably, based on its size, in my spleen. Although we knew why they had run the bone marrow test, I don’t think either of us were prepared to hear that it tested positive for Lymphoma. Dr. Lemon was great though. He took time to explain the results he had, and he described the treatment plans he had in mind. 

We left the office that night and realized we still have many questions. The full range of bone marrow test results will not be available for a couple of weeks, and I will have another PET scan on Tuesday, so some of our questions will have to wait a little longer. We do know a few things though:

1. Lymphoma is treatable. 

2. I will begin chemotherapy next week (probably Tuesday)

3. The current treatment plan is for 6 rounds of chemotherapy. Each round of infusions will be followed by a two-week break. 

4. That back ache was a blessing in disguise: if I hadn’t lost weight, no one might have noticed the enlarged spleen until it was too late. Score one for back pain!

The prescribed chemotherapy regime is given continuously over a 96-hour (4 day) period. At least this first round, I will be admitted to St. Agnes for the duration of the infusion. 

If you’ve made it this far, thank you. You are probably as shocked as we were (are). Many of you are asking how you can help. At this point, please say some prayers. In the future, if we need help we will let you know. I’ve been through chemo before, remember? I’m not looking forward to it, but I have a feeling I know what I’m in for. 

I (we) will post as much as possible here on this blog. I (we) appreciate emails, texts, visits. Keep in touch please. 

PS: If you fancy yourself an internet researcher, there are a million rabbit holes you can go down, so proceed with caution. But the facts are: it’s Diffuse B-cell Lymphoma. Stage has yet to be determined, but Dr. Lemon is giving me the “best stuff” ... the chemo recipe called R-EPOCH.