Saturday, April 4, 2015

Navigating New Waters (Our Trip Down Cancer Lane)

My husband has cancer. They call it DLBCL....Diffuse Large B Cell Lymphoma. It's fast-growing and illusive at the same time.

It started with back pain that would not let up even with his regular chiropractic treatments. We have both seen a chiropractor on a regular basis for more than three decades and we believe in chiropractic care. But, something wasn't right because his pain not only persisted, it got worse, even with regular adjustments. Even a trip to the ER for pain control did not signal anything more desperate to our regular chiropractor, so he found another chiropractor in hopes of finding help. The ER doctor and the chiropractor had both diagnosed him with sciatica, a nerve issue that we all knew could cause horrible pain.

But the new chiropractor, after just a few treatments, knew something else was going on and he recommended, then arranged for, an MRI so he could see why he was not responding to normal sciatica treatment.

And there it was, a huge tumor, 10cm long and 4 cm wide, all wrapped around his sacrum and pushing heavily into his tail bone at the base of his spine. Because we got the MRI results late on a Friday afternoon, we had no chance to see his regular doctor, so I took him to the ER to get some stronger pain control help. That did not help and he ended up back in the ER early Sunday morning and he was eventually admitted for IV pain control. Relief was hard to find, but he was starting to feel better on the hard-core narcotics.

While at the local community hospital, they ran other tests over a few days' time, concluding that they were out of their league and they recommended he be transferred to either the University of Maryland Medical Center or The Johns Hopkins Hospital. We opted for Johns Hopkins and waited 24 hours for a bed there.

Our son, Michael, drove up from Raleigh to help. Our other kids began making plans to help in whatever way they could.

At Johns Hopkins, they admitted him to the neurology floor and began their myriad of tests, all while keeping him on the hard-core narcotics for pain control. At this point, there was no diagnosis and he was admitted to neurology due to the fact that the tumor was wrapped around his spinal cord nerves.

The doctors at Hopkins ran their own tests, doing extensive MRIs and CT scans. One CT scan revealed a large pulmonary embolism in his right lung, essentially shutting that lung down and forcing him to use only his left lung. He had no symptoms; no one was looking for a pulmonary embolism. If not the for CT scan, it may have gone undetected and carried out it's tendency to kill. They began blood thinning treatment immediately. We praised our Living God.

One doctor on his team came to talk to us about the pulmonary embolism and said, "PEs are normal when there is a malignancy."

I said, "Wait....he has a malignancy?"

She answered, "Well, they have to run more tests. I mean, no one knows for sure. We are scheduling a biopsy but the blood thinner complicates that."

When she left, we looked at each other. We knew. He had a malignancy. Ok, then. Let's fix this.

Ten minutes later, another doctor came and told us that a spot was found on his spleen during the same CT scan. He said they can't say for sure what the spot is, but since it's on his spleen, it's likely lymphoma. We learned that lymphoma is the best news, though. How can a cancer diagnosis be the best news? Because removal of the tumor surgically would leave David without many functions, crippling him in many ways and requiring extensive rehab. And it could grow back. Lymphoma meant they could shrink, then kill the tumor(s) with chemotherapy and no surgery would be required.

We prayed for lymphoma. They did the biopsy on Friday, March 27 and we waited until Tuesday, March 31 for results.

It came back lymphoma. We praised our Living God.

Our Son, Matt, flew in to help. Michael had to go home.

Hopkins did another round of tests, including a PET scan and another host of blood tests. In the meantime, we got to know David's nurses and techs and ministered to them as we could.

He's home now, after 12 days in 2 different hospitals and pain control is still an issue. He starts an aggressive cocktail of chemotherapy at Johns Hopkins this coming Tuesday. His meds in the meantime run us about $1,850.00 per month, and that's with our prescription discount applied. Before that, they were close to $7,000.00.

His oncologist, Dr. Richard Jones, said, "Lymphomas like to hide in secret places. I know where they hide. I know how to find them. I will find them and I will kill them all. That's my job." I felt confident when he left.

David gets weak easily and pain control is still an issue here at home. We are navigating new waters. Cancer is deep, deep water, yet it has waves that are unpredictable and even obstacles that reach to the surface of its depths, leaving a person reeling with questions, uncertainties and fear.

Yet, our God has sustained us; we have not given in to the fear and panic that threaten to rise up and swallow us. While we feel like we're in a deep, deep ocean with only a row boat, but that's just how we feel. The truth is, despite our feelings, we are in the hands of the living, almighty God Who holds us and has promised to never let us go or be consumed by what this world dishes out.

Nothing about our God and His promises changes because of this diagnosis.
Nothing about our God and His promises changes because of how we feel.
This is our focus.

A friend has set up a Gofundme account for us, which is super kind of her. You can access that here.

So, we rest in Him.

1 comment:

  1. Know that you are in my, our prayers. May you feel God's loving arms around you.