On March 28th of this year, I was rubbing my neck and my hand grazed my collarbone. I felt a lump about the size of a pea that was hard to the touch that moved when I touched it. I didn’t freak out, but I definitely thought it was odd that I suddenly had a lump on my body. It was also weird to be able to feel it, and see it once I looked, so easily. Fortunately, I had a mammogram already scheduled for the next day, so I didn’t think that much of it.
Because of a previous history of cysts and dense breasts, I was scheduled for both a mammogram and a sonogram. I didn’t think to mention the lump during the mammogram, but while I was having the sonogram done, I mentioned the lump on my collarbone to the technician doing my sonogram. The tech, Ann, could feel it too and she almost immediately left the room, with a quick “I’ll be back in a minute.” I was alone in the exam room for about 20 minutes. Ann came back in and told me she had talked to the radiologist, the clinic director, and my doctor. Wow! That was a lot of busy people to talk to while I had waited. The doctors decided they were now in a diagnostic phase and Ann needed to do a hand-held sonogram of my breasts and my lump. She then proceeded to sonogram everything between my sternum and chin. After she’d completed the sonogram, she left for about 20 more minutes and returned with two doctors in tow. That was not a good feeling.
One of the doctor’s sat down and explained that my breasts looked fine, but I would need a biopsy of the lump on my collarbone. The lump appeared to be two enlarged lymph nodes, but they had no idea why they were enlarged. She said that I needed a needle biopsy done as soon as possible and that the lump would probably need to be removed.
I was not “Oh my God I’m going to die” worried, but I have had better days. I only told a couple of friends about what I’d found. That night one of those friends met me for a two drink dinner. Best case and worst case scenarios were discussed, but I knew I had a lot of research to do.
The next day, I started looking up lymph nodes. The symptoms for both lupus http://www.lupus.org/answers/entry/what-is-lupus and non-Hodgkin lymphoma http://www.cancer.org/cancer/non-hodgkinlymphoma/ hit a lot of notes. I had been complaining of fatigue and dizziness for a couple of months, and that, plus a rash I had, all showed up as symptoms of those illnesses. At that point, I was in investigative mode while still trying not to panic myself. That left me walking a very fine line.
That afternoon I had an emergency meeting with my regular doctor. She ordered tests for everything she could think of. She was completely stumped and listed a number of possibilities, which were basically the same ones I had found in my own research. I had a full blood panel taken and was told that it could be a few days. All I could do was wait for the results. My worrying wouldn’t speed things up or change anything.
When I got home, the clinic called to schedule the needle biopsy. I knew it was coming and I knew what they were looking for, but it still freaked me out just a little to be scheduling a session with the cancer center. Cancer is a nasty word that no one wants to hear turn up in a conversation about their health, or the health of anyone they love. But, whether I liked it or not, that’s where the test was scheduled.
For the next few days I tried to continue with my life as normal. I didn’t feel well and had to push myself to make it through my regular activities. I don’t know if it was physical or being stressed, but my head was foggy and my energy was non-existent. I tried to give myself the gift of taking it easy, but that’s a hard thing for me to do.
On the 4th day after the mammogram, I finally got a result: I had tested positive for lupus. My doctor reassured me that the initial test had a high percentage of false positives and that my blood was being sent for the next round of testing. At that point, the lupus diagnosis felt almost like a relief. There was a possible name for everything my body was going through.
The next step in the “investigation” was an appointment with a dermatologist. They checked me out, literally from head to toe and prescribed a couple of (expensive) salves for my hives and bumps. They started to help with the hives almost immediately, which was great. They also took a biopsy of the rash on my arm to test. The dermatologist and I were both pretty sure that particular rash was eczema, but they decided to check for lupus there too.
When the results for the second set of lupus testing came in the news was good: I was negative for lupus. I also received a negative result for the skin biopsy from my arm. What a relief! At the same time, in my mind, that meant that the odds of the enlarged lymph nodes being non-Hodgkin Lymphoma were higher. I don’t know what the science of it was, but that was how it felt to me.
After a lot of discussion with my sister, (who is a retired Nurse Practitioner married to a retired Hematologist,) and my own doctor, I cancelled the needle biopsy and scheduled an excisional biopsy instead. The thinking was that since the lump was hard the odds of the needle being able to pull out enough matter to test were slim. The excisional biopsy would leave a scar, but there was no point in going through two procedures instead of just one. I felt good about that decision, but was prepared to cancel the procedure if the lump decided to suddenly disappear.
Still feeling tired and lethargic I looked for things to do that would take my mind off what was going on. I tried to focus on fun projects in my writing and painting. Having fun felt pretty important right then. I also decided that no matter what the results of the biopsy were I was going to go ahead and go on my scheduled vacation in the Dominican Republic.
I met with my surgeon, and wow, what an ego! He walked in late, apologized for making me wait and then immediately started trying to feel the lump. When I showed him how I found it, he said it didn’t feel like a lymph node to him. I told him that was what the sonogram showed and he immediately informed me that was only a sonogram and that he was the doctor. I immediately asked him if he’d heard about God having a doctor complex. He was not nearly as amused as the nurse and I were, but I think it broke down a barrier between us.
We agreed to schedule the surgery and to my great surprise, the procedure had to be done under general anesthetic. Great. Now I was going to have to tell my girls. Up until that point I had gone through this process without telling them. I didn’t see any reason to worry them when I didn’t know yet what I was dealing with, but the general anesthesia was the line that made me decide it was time to tell t hem. I knew that not only were they going to be concerned, they were going to be pissed I hadn’t told them earlier. I was right.
I also wasn’t going to be able to do any upper body work for two-weeks post-surgery. That might not seem insurmountable to the average person, but when you make most of your living teaching fitness classes, it’s kind of a big deal to cancel 22 classes on short notice. With a lot of help and support from the gyms where I teach, all the classes got covered.
On April 19th, I had the cyst on my clavicle removed. It was a little surreal at the hospital. I absolutely believed the cyst needed to be removed and checked, but I didn’t think it was nearly as big a deal as everyone at the hospital did. I had one friend drop me off for the procedure, and then another one came and got me to take me home. The hospital seemed to feel I should have someone where with me, and plenty of friends and my daughters had offered, but it didn’t make sense to make anyone sit in a lobby while I was out.
I got through the procedure just fine. When I came out of the anesthesia though I had an overwhelming urge to cry. The nurse said that wasn’t unusual. I also had no awareness of any time passing while I was out. I very quickly became lucid and was actually able to give my friend who drove me home directions on how to get there. She and the nurse were both pretty amazed at how quickly I regained lucidity. Stubbornness prevailed once again!
The day after surgery I removed the outer bandage on my incision. It was much longer than I expected, about an inch and a half long. After 3 weeks of constantly checking to see if the lump was getting any bigger, it felt weird not to have it there to play with.
I was amazingly unconcerned about the results of the biopsy. I had wanted the lump gone and it was. I still had no results when it was time for my vacation to the Dominican Republic on April 29th. I went and reveled in 5 days by myself on the beach. There was nothing to do for the whole time I was there. Very little English was spoken at the resort where I stayed and I spent most of my time lying on the beach, umbrella overhead, a drink beside me and my Kindle in my hand. For me, it was a slice of heaven.
When I returned, I had the results: it had taken two rounds of testing, but the two lymph nodes that had been taken and the cyst were all benign. No sign of anything scary or dangerous. Thank God!
The skin on my chest was, and still is, numb. It’s strange to touch your chest and not have any sensation. The surgeon has assured me that the feeling will come back, but I am not too concerned. It’s not like I use my upper chest to write with or anything.
I am grateful that I found the lump the day before my mammogram; I am grateful the sonogram tech responded the way she did; I am grateful my breasts were clear; and I am grateful the lump on my collarbone was benign. We are the experts on our own bodies; if you find anything suspicious on your body, have it checked out immediately.