Words you never expect to hear

The past few days have been terrible ones for our family. As most of you know, Lori was diagnosed with lymphoma on Wednesday. We have gotten what we consider good news today about the prognosis, but first I'll start at the beginning...

A few months ago Lori felt what we thought was a cyst on the back of her neck. She went to our primary care doctor who agreed that it was likely just a cyst. She was not at all concerned and explained that they would just follow it to see if it grew. She did give Lori the name of a surgeon in case Lori became concerned or just wanted it out. Eventually, Lori was uncomfortable with the idea of this mass in her neck and she was having some pain in her neck and shoulders so we thought that maybe the cyst was sitting on a nerve. She made an appointment with the surgeon who then removed it the next day. Initially, the surgeon agreed that it seemed to be a cyst, but when she removed it the surgeon informed Lori that it was actually a lymph node. The surgeon was still very reassuring and told Lori that it was likely nothing.

Less than a week later, we found that out that it was very much something. According to the pathology report, Lori has B cell follicular lymphoma. I could never imagine the shock that we felt in learning this.

She.

has.

cancer.

In the most base form of denial, I kept saying to Lori that "lymphoma" must have some other non-cancerous meaning that we just don't know. Right? There's NO WAY that this could be cancer. Lori just sat there and cried.

We have a 2 year old. We have a baby on the way. We're young. This can't be happening. And if it is, how could life be so unfair?

The greatest unanticipated benefit of us working for a comprehensive cancer center is that everyone takes care of you and they do it very quickly. The people we work with took control of the situation immediately. While still in utter shock and disbelief, we were ushered down to meet with the nurse practitioner for the oncologist we eventually saw this afternoon. She walked us through the pathology report, talked about some of the treatment/management options, and was generally reassuring to us. This all happened within 30 minutes of us getting the news. The greatest gift we got that day was her time and her willingness to open up an appointment slot for us on Friday (today) with the oncologist. After speaking with the nurse, we left work feeling numb and just came home to adjust.

The past few days have been an emotional roller coaster and we have gotten little sleep. Sometimes we have felt optimistic - the surgeon used the word "surmountable" so it must be okay, right? Sometimes we have felt the greatest fear I've known. And throughout it all we had to be fully present for Ellie, which has truly been the most difficult part of all of this. Lori has had a hard time being with Ellie and thinking the "what ifs?" that I'm sure I don't need to spell out. The best decisions that we made during this time though were to just feel what we were feeling in the moment and not to get on the internet to learn more about lymphoma.

But today we met with the nurse practitioner again and the oncologist, Dr. R, and as I said before we feel that we have gotten good news. Our understanding of this is not complete, but I will paraphrase what I heard. The lymphoma is grade 1 of 3, which is great. It is also a slow growing, non-aggressive type of lymphoma. And because Lori had the lymph node removed and is not symptomatic, she will likely need no treatment. I think we felt 20 pounds lighter just hearing that! They have scheduled her for a bone marrow biopsy next week and a CT scan the week after to look for other involved places. They warned us that they do expect at least some other nodes to "light up" on the scan since this is a lymphatic cancer, but that it wouldn't change their plans and we would remain optimistic.

However, this is not something that is gone. The lymphoma is still present in other parts of the lymphatic system and there is nothing you can do to get rid of all of it. You certainly cannot take out all her lymph nodes. There is the possibility that this will become a more aggressive type or other lymph nodes may become enlarged, at which time treatment would be used. There are a few treatment options that they explained to us today and all of them have high levels of success. For now though this will be treated as a chronic condition and managed over the rest of Lori's (hopefully very long) life. She will need to see Dr. R every 4 months and will have a CT scan every year to monitor it. There is every reason to believe that this will be successfully managed for the next 30 years.

huge sigh of relief.

Although this diagnosis is not good and we wish we weren't suddenly thrust onto this journey, we are aware of how lucky we are. We were thrilled with the news today and feel so happy about the prognosis. We have a beautiful 2 year old daughter who understands nothing of this and just wants mommy to take her to the playground. We are expecting another wonderful daughter in 2 1/2 months. We have each other.

We will try to keep everyone updated about the results of the blood work, scan, and bone marrow biopsy. We will not see the oncologist for 2 weeks though to get the results and final recommendations. During all of this time, we have appreciated and will continue to appreciate your thoughts, prayers, calls, emails, etc.

We are doing okay. We will all be okay.