I know the announcement of my diagnosis came as a shock to most of you. It's been such a roller coaster the last few months that I just haven't said much to anyone. But my awesome hubby sat down with me yesterday (or maybe it was the day before) and helped me write down the timeline for everything so I could share it with you all.
(Please excuse any typos. I am on some good meds tonight.)
The week of August 20, I started having pain in my shoulder/back. I thought it was caused by sleeping funny. I used countless products (patches, creams, etc.) to help ease the pain, but nothing quite took it away. But I sucked it up so we could take our family vacation to Gatlinburg! Oh, we had a blast. The kids were well-behaved, we had an awesome visit with my momma, and the scenery was absolutely amazing.
While we were in Tennessee, I battled the shoulder pain. On Wednesday, August 28, I woke up and was rubbing around on my neck & shoulder and found a lump just behind my collarbone on the right side. My mom & Nathan both felt it, and we blew it off as a tight muscle or something since my shoulder had been hurting. But I vowed to call the doctor as soon as we got home to make an appointment to see him if it hadn't gone down.
On September 4, I saw our family doctor. He felt the lump, but remained calm. He ordered bloodwork & said we'd wait & see. The nurse called to tell me my bloodwork came back a little "off" and said the doctor wanted to repeat it. On September 10, we did more bloodwork and the doctor ordered an x-ray of my chest. On September 12, I went for my first x-ray. It came back clear, and we all breathed a sigh of relief, although we still had worried in the back of our mind.
On October 24, I went to the doctor again. I was still having pain in my shoulder, the lump was still there, and I had developed a cough. The doctor said the cough was going around (it was...everyone had one). He decided to put me on an anti-inflammatory to help my shoulder pain, and he ordered an ultrasound.
On November 2, I had an ultrasound of the lump. We're not sure what happened, but somehow the lymph node got measured and reported as 5mm. At 5mm, a lymph node is not considered worrisome. On November 13, I went back to the doctor's office WITH Nathan. We were determined that we wanted answers. The doctor sent me for blood work and an x-ray that afternoon. He also started me on an antibiotic just in case.Before I even got home from the x-ray, the phone rang. It was the nurse. She didn't give any details, but said that the radiologist and doctor had talked and I needed to go in for a CT scan. She scheduled it for me for November 15.
I had only been home for an hour or so after my CT scan when the phone rang. It was my doctor's office again. They had made me an emergency appointment with an ENT for that afternoon. We hurried & went to pick up the DVD and report from the imaging office and went to the appointment. She was very concerned. My lump was NOT 5mm. It measured at 7.5 cm x 4.8 cm x 5.6 cm. It involves a lot of major blood vessels, and is pressing into the top of my right lung. She ordered a biopsy.
On Monday, November 19, I checked into the hospital for a CT-guided lung biopsy. They had to go in through my back because of all of the vessels involved.
And then we waited. Holiday weeks are not good weeks to have biopsies done. My awesome ENT called to check on me, and gave us both her home & personal cell numbers with a list of symptoms to look for which would mean the tumor (first time she used that word) has grown bigger & was causing something called SVC syndrome (obstruction of the superior vena cava).
On Monday, November 26, I had had enough waiting. I called the doctor's office and asked for test results. The reception called back and said that the doctor did have the initial pathology in, but wanted to talk to us in person. I called Nathan to come home from work & we went.My mom went with us to the ENT. I can't even say how much her support meant. Just her being there in the office was a huge comfort. The ENT walked in, sat down, and I could tell by the look on her face that she didn't have good news. She told me I have a form of non-Hodgkin's Lymphoma. I do have a positive marker for something, which means my lymphoma will respond better to chemo.
The ENT made me an appointment with an oncologist. Thankfully he's awesome & is much closer to home (a 20 minute drive instead of an hour).On November 27, we met Dr. Raddin for the first time. He was amazing. He sat and explained things. My appointment lasted almost 2 hours. He is most concerned with the rapid growth of the tumor and SVC syndrome. It's dangerous to try to remove the tumor, so we need to shrink it...FAST!
My official diagnosis is Anaplastic Large Cell Lymphoma (ALK +). We don't know the stage yet.They immediately set up every appointment I needed and scheduled my first chemo treatment for Friday. I can't believe it's happening so fast.Yesterday (11/28), I had an echocardiogram, a CT scan of my abdomen, and a PET scan. Today (11/29), I had a CT-guided bone marrow biopsy and a port put in my chest for chemo. The doctor called tonight to tell us that the PET scan didn't show any cancer anywhere else (HOORAY!), but I am anemic, so that is concerning. He said the bone marrow biopsy will be in next week sometime, but the results (is there cancer in the marrow or not) will not change the kind of chemo I will get.
Tomorrow morning, I have to be at the cancer center at 8 AM for my first infusion. I'll then have chemo every 3 weeks. I will have between 4 and 6 treatments. Radiation may be necessary, but we'll have to wait & see.
So there it is. The story of my diagnosis.
We appreciate all of your thoughts, prayers, phone call, and emails.
