The past three weeks have been a whirlwind of stress and emotions, and the next few weeks aren’t promising to be much easier.
I’ll start at the beginning…In February, I remember my rib popping out of place and bothering me. No big deal, I went to my chiropractor and he put it back. Easy.
Then in March, the same rib popped out of place when I turned around in my car seat to take care of my son. This time, it also felt like it broke. Even after the rib was put back, a sharp pain in my side accompanied deep breaths and certain movements. As far as I knew, there isn’t much that can be done for broken ribs, so I let it be, went on vacation and eventually it all healed up (or at least it stopped hurting).
Fast-forward to mid August, on a very average day at work, while sitting at my desk, I felt the rib pop out of place again, and felt a crack again, in a similar, but not identical place. I wasn’t sure it was the same rib, but they were certainly close to each other. I going to ignore it, but then I had lunch with my good friend Jennifer, who was celebrating her one-year check up, where the cancer she had fought was still gone.
We were reminiscing on when her symptoms started, and she was ignoring them, because everyone around her told her it was probably something benign. I darn near yelled at her to go to the doctor, because she was ignoring important signs from her body. So after lunch, I decided to take my own advice and made an appointment to see my doctor the next day.
He was bothered that the same rib(s) having so much trouble in one year, and he could feel swelling where I thought the rib was broken. So off I went for a chest x-ray. I looked at the X-Rays with the tech (a pal of mine), not that I knew what I was looking at, and even my layman’s eyes could see something was wrong. The rib that was causing me pain had a large blight on the x-ray where the bone couldn’t be seen. Uh oh.
The next day, the doctor called and confirmed my fears that there was an abnormality on my rib, and we needed to look closer. This abnormality was breaking my ribs from the inside. It appeared that two ribs had been affected, because the abnormality on my 10th rib appeared newer than the one on my 9th rib. Whatever it was might be spreading and we needed to find out what it was. So my doctor requested that I go get a LOT of blood work done, and he scheduled me for a CT Scan and bone biopsy the following Friday – 8 days away.
When I asked my doctor what it could be, none of the answers were good, but some were terrible. Multiple myeloma, cancer, metabolic bone disorders, thyroid issues, or a benign bone cyst. But the fact that the abnormality was on two ribs wasn’t a good sign, as the less scary options wouldn’t have spread to another rib.
So enter another good friend and co-worker, Dana. Who went with me to get my blood drawn and then we went out for wine. Lots of wine. Then pizza. The blood work was clearly extensive, and each little tube was marked “PRIORITY. MUST BE PROCESSED IMMEDIATELY”.
Two days later, my doctor called again, with the first good news of the week. My blood work looked awesome. My thyroid was functioning normally, and the other tests were all pretty normal. So the chances of my problem being benign went up, and the chances of it being cancer that was advanced went down. It could still be cancer.
So we waited until the next Friday. Anxiously, without much sleep, and with a lot of milk shakes.
Friday, August 24th, I went in for a CT Scan and bone biopsy. The staff at Kadlec Regional Medical Center hospital was wonderful, efficient and kind. I would have multiple CT Scans, they told me. First, they took the scan without iodine contrast dye. Then they did it with the dye. At that point, they let me see it, and there, on my right, posterior ninth rib, clear as day, was a tumor, that looked to be about the size of a golf ball. Crap.
They took me to a waiting room, where I would get ready for the biopsy, while the radiologist took a look at my CT scans and decided how to perform the biopsy. Then, back into the CT scanner I went. This time, they would use the image to guide a biopsy needle to the tumor and bone to take samples.
When the nurse asked me if I wanted conscious sedation, or if I was happy with local anesthesia only, I almost laughed. Of course I wanted the pain killers. I can’t imagine anyone wanting to feel needle hit bone. Thanks to an awesome combination of Valium and Morphine, and I didn’t even feel the biopsy. Three or four samples were taken, and sent off to the pathology department, and I was sent to recovery.
The biopsy left me with some discomfort and bruising on my back, and hurt a bit for a few days, but healed up nicely. On Monday, the doctor called to tell me that, while my results weren’t in yet, the pathologist had notified him that he was sending my biopsy samples to the Mayo Clinic for review, and that I would receive his (the local pathologist’s) findings the next day. Crap.
In the meantime, more good friends showed up to help keep me distracted. We made baby blankets for the many babies due in the next few weeks, drank wine, and played classic Nintendo (Dr. Mario and Bubble Bobble). We had a lot of fun.
The next day, I was so nervous I couldn’t get much done, and went home early. My doctor called at 3 and asked me to come in that afternoon, so we could talk about the results. Double crap. I doubted he would call me in to tell me the tumor was nothing but rainbows and flowers.
My husband and son had been gone since Sunday, visiting my father-in-law down in California, while my husband attended some training down there. After I finished a serious crying jag, I decided I wasn’t about to go to that appointment alone, so yet another good friend came to my rescue. My very good friend Andrea blew off the rest of her busy day to come with me. We have the same doctor, so it was awesome to have a friend with me who could read the doctor, and knew what was normal and what wasn’t.
His first words to me were “it isn’t as bad as it could be. “ I have cancer.
I have Spindle Cell Sarcoma, and here is what I know about it:
- It’s very very rare. Only about 80 cases occur in the U.S. each year. This means there aren’t many doctors that know how to treat it, and that there is very little information available on it.
- It is characterized and named for the shape of the cancer cells, which look like spindles (Sleeping Beauty tried to warn me about spindles).
- Its cause is unknown.
- Stage 1 isn’t so bad. If you catch it early, you can surgically remove it and, so long as you get it all, you shouldn’t see it again.
- If you don’t get it all with surgery, it comes back with a vengeance.
- If you don’t catch it early, its pretty much impossible to stop.
- It grows slow, but steady, and normally occurs on the long bones of the body.
- The rib is a weird and complicated place to have it.
The good news from the pathologist is that mine appears to be stage one. While the tumor is large (4.0 cm x 2.0 cm), there is little pleomorphism, which is the term for how mutated the cells are. Mine are getting spindly, but it isn’t too bad yet. That’s a great sign.
The other good news came from my doctor (who caught it early and shall now be known as super-doc): The best doctor in the western U.S. for sarcomas is in Seattle, just a few hours away. People fly from Chicago and LA to see him, and I am much closer. My doctor had referred another case of this cancer to him before, and had been happily monitoring the man for 10 years without any sign of recurrence.
So I have been referred to Dr. Chappie Conrad at the University of Washington Medical Center, where he is a department director, and also director of the Seattle Cancer Care Alliance’s Sarcoma department. Dr. Conrad is the best at this, and I’m told he also knows how to remove tumors from difficult areas, like the inside of a rib.
Calling the friends and family who needed updates was incredibly difficult. It’s a horrible story to have to tell, and I imagine it sucks just as much to hear it. So I didn’t get to as many people as I wanted.
My appointment with Chappie is on Tuesday morning, and I’ll be meeting with him and another orthopedic surgeon, who will develop a treatment plan. The treatment will most certainly involve surgery, to remove the tumor and the rib it is attached to, as well as the soft tissues and muscles that the tumor has formed in.
In the mean time, the pain in my rib is steadily getting worse. I can’t make it past 2 p.m. anymore without something to relieve the pain and pressure. The longer I sit, the worse it gets, so I’m trying to stretch a lot , and taking Aleve to help with the pain. I’m glad I don’t need anything stronger.
Since I am so very lucky to have many friends and family members who care about me (as evidenced above), I figured this would be the easiest way to get the information out to those who want to know. So I’ll keep this blog updated when I can.