Tag Archives: primary non-hodgkins lymphoma of bone

Sometimes a Break is Good for a Break

I took a day off my walking yesterday, and I think it’s done the fracture in the rear of my pelvis a lot of good. It had been feeling a bit achy for the last few days. I’d tried changing the path I walk to reduce the hilliness in hopes of giving my pelvis a kind of working break, but it was still feeling a bit stiff and sore, so I held off on any walking yesterday, and when I got up this morning I was feeling much better, and was able to walk double the distance I’d been walking without any pain in my pelvis. Yippee for that! Continue reading Sometimes a Break is Good for a Break

Freakish Diagnosis / Introduction

My name is Jackie. I’m an American who lives in Brisbane, Australia. In March of 2008, after nearly eight years of trouble with my hip/groin, I was diagnosed with large B cell primary bone non-Hodgkin’s lymphoma of the pelvis. Fortunately for me I am stage A1E; which means the cancer has not spread and I haven’t developed B stage symptoms. Primary tumors of the bone are pretty rare, and even more rare for women, but I guess I’m special. My tumor encompasses my entire right hemi-pelvis… I think of it as my panty tumor, and in spite of the fact my doctors tell me it’s absolutely enormous I can’t say that I ever felt it until about a week before I started chemo-therapy.

It’s been a long strange journey getting here, and I’m not even sure what parts of the story are relevant, but essentially, I hurt myself running back in May or June of 2000. I had been jogging in a state park in Ohio in the US about a week or so after heavy rains had caused flash flooding. It was an area I was pretty familiar with since I’d jogged or hiked there nearly every weekend for about three or four years, but floods have a way of changing the terrain. I came around a bend and was going to jump a little ravine not realising it had been washed away into a big gulley. I ended up landing on my right leg with my knee locked and drove my femur up into my hip socket. At the time I thought maybe I’d sprained something, and I limped about six miles out of the park thinking a few weeks rest would sort it all out…. Eight years, a zillion dollars in physical therapy, a hundred pounds of fat, a half a zillion doctors visits and a whole lot of pain later, chemo therapy is looking like the cure.

Now that injury likely has nothing to do with my now having a huge cancerous tumor eating my right pelvis, but it did mask the symptoms of the cancer as every medical professional I’ve delt with until February of 2008 heard about the injury and assumed the pain I was having in my pelvis, hip, groin and back was related to that injury. No one ordered an MRI until the specialist I met in February of 2008; I’d had a CT scan in January of 2006, but it was of my spine, and x-Rays taken in 2006 didn’t reveal anything (though those taken in February of 2008 show my right hemi-pelvis looking like an old moth eaten old piece of wool).

When I met with the specialist after getting the results of the arthrogram MRI, he said to me they didn’t know what it was, but obviously something was doing some sort of damage to my pelvic bones. He told me at that point that it was likely either some type of infection or a tumor. I’m a glass half full kind of a girl, so I said “What kind of infection do you think it might be?” He replied, “Uhm, it’s not an infection.” Which still gives me a giggle. Even then I really didn’t believe it was anything all that serious. Afterall, other than being overweight, I’m really healthy. I eat a well balanced diet, full of whole grains and a variety of fruits and vegetables. I had always exercised, and while I’d been fairly limited after that injury in 2000, I was still kicking around and trying to be active using an elliptical trainer when the pain wasn’t too bad and my pool when I was having trouble with weight bearing. I’d even been working on taking up pilates. Somehow I just really believed I was not a “cancer” person. I’m a bit type A and always thought I’d be more a “heart disease”/”high blood pressure” person (ridiculous when you think about it, but disease prejudice is usually as baseless as any other). Anyway, I felt that if I had cancer I wouldn’t feel as good as I did; my only symptom of this disease was a continual weakness throughout my groin and some pain in my right hip/buttock and back (usually manageable via naproxyn sodium).

After the MRI, my specialist (who specialises in hips/knees and cancerous bone tumors… seems to me a strange combination but a lucky one from my POV), ordered a special type of CT scan and a full body bone scan. It was after these scans that he told me I had a tumor and we were going to have to do a surgical biopsy to get an accurate pathology. So first of March I was tossed into the hospital and one long incision in my bottom later, I got my diagnosis. To be honest I’d been reading about all these varied types of bone tumors and the treatments and likelyhood of survival, and when my doctor told me that it was curable via chemo and would require no furthur surgery as long as I kept my weight off my pelvis and didn’t cause it to collapse, I was relieved. I know cancer is a really serious disease, but I’d been reading about tumors that resulted in a hemi-pelvectomy (which requires amputation of the leg below the pelvis) and the difficulties of irradiating pelvic bones and things along those lines, and my diagnosis was a Godsend to me. Instead of feeling all the fear and trepidation of a cancer sentance, all I heard was “likely curable with 16 weeks of chemo and immuno therapy” and I honestly felt blessed. Add to that, the fact that my specialist told me I would likely be walking unaided (no crutches/cane) within 5 to 10 weeks and back to myself within a year of treatment, and I felt like I was being handed my life back. I’d had so much trouble with my hip/leg; I’d lost hope that I would ever be able to walk normally again. Now I’m looking forward to healing from this cancer, getting my pelvis strong again, and losing the weight that’s piled on over the last eight years of inactivity.

Finding out I had cancer made me really curious about what other people go through with this disease and the treatment, and I’ve had the pleasure of perusing a number of blogs written by people who cared enough to share their experiences, and I’ve found them hope inspiring and somehow comforting.  I decided I might do the same as aside from the catharsis of writing about what I go through in the course of therapy, I hope my story might give a similar inpiration and comfort to anyone interested enough to read it.