I wish I was kidding

If I were to tell you that 2 of the 4 members of our family have had to fight cancer over the last 5 years you would say, YOU'RE KIDDING! I wish I was. I know you are concerned and want to know what is going on, so I'm going to get right to it.

Disclaimer, this stupid road, while familiar, is bumpy and filled with twists and turns. One of the fun aspects is that it is an emotional roller coaster. Know that I do have a heart, but at this moment (literally, it changes by the second), I am feeling very "just the facts, give me the facts." That makes it a good time for me to write this post that I have been dreading. It will be much easier to do when I am in this mood rather than when I'm an emotional mess. 

Ok, so here we go:

We started moving things to the new house on October 1. Chad spent one weekend carrying boxes from one attic to the other attic. So when he woke up with knee pain, it made sense that his 41 year old knee was not enjoying the trips up and down stairs. The pain continued and has become severe. About 2 weeks ago he noticed a bony lump just below his knee to the right of his shin bone (the big bone is the tibia and the little bone is the fibula, you'll need to know that...). It is hard, hurts and is hot to the touch. On 12/5 he went to the urgent care facility in Chapin because he has not found (or looked for) a primary physician since we moved to SC. Chad doesn't like to take medicine or go to the doctor. So getting him to urgent care was a challenge, nevermind getting him to go in for a well check just to establish a relationship with a doctor. They did an x ray of his leg and found a "mass." They scheduled an appointment for the next day with an orthopedist.

We went to the orthopedist and didn't find out a lot from him (NOT impressed with him). But we did get a copy of the radiology report from the xray. That report suggested that it looked like a Giant Cell Tumor. I thought I'd become a pretty good radiologist after my experience with Grant and now this. I studied the images and agreed that it did look like a GCT. Or possibly an Aneurysmal Bone Cyst. There are hundreds of bone tumors and 90% of them are benign. So we were looking at surgery and worse case a bone graft. Not fun, but ok. The ortho guy sent him for a MRI on 12/11 and we were to return to him on 12/13 for the results of that and to find out when he could get us in with the Orthopedic Oncologist in Charleston at MUSC.

While the MRI was horribly painful for him, he made it through that and we were just waiting anxiously for Thursday morning's appointment. I need to say that both Chad and I are very peaceful with whatever this may be. NO, we don't like it. No, we don't like waiting for answers. Yes, we are mad. Yes, we cry. BUT, we are peaceful. It is hard to explain but we know that we are not alone and certainly feel God holding our hearts and know that isn't going to change.

I know that once the "customer service" level at a doctor gets really good and they start giving you their cell phone numbers and making appointments quickly that you should be concerned. We went back to the ortho dr yesterday. The first visit we waited for 3 hours to see the doctor. We were taken right back and waited about 10 minutes yesterday. Then we met with the Office Manager who assured us he was calling MUSC every 5 minutes on our behalf and wouldn't rest until we had an appointment with the oncologist on Monday morning - not good signs. So the doctor said it "didn't look good" and "it looks malignant." But he refused to say more than that. He does knee replacements, he isn't an oncologist and I'm sure he was not enjoying this meeting and my pressing questions. He kept saying that he wasn't comfortable telling us anything more because he wasn't an expert. He got right to telling us about the appointment in Charleston and the scheduling issues, skipping over the real information. Being experienced with this mess, we knew to get a copy of that radiology report. It didn't matter what the ortho guy was saying, just give us the report. Which he did and a copy of the MRI. That is where the information is. So here is what it says (the parts I think are important) for those of you that really want ALL the information:

Very heterogeneous mass measuring approximately 51 mm AP x 46 mm transverse x 62 mm CC. On T2 imaging multiple small internal cystic spaces are identified, some of which contain fluid, but the majority of the lesion remains solid.  Following contrast administration, the solid components enhance vigorously and the cystic components show no enhancement however there is enhancement of the septations that separate the individual cystic loculations internally. The perifpheral margins are irregular.. There is invasion of the surrounding musculature, neurovascular bundle and tibial artery. 
There is a list of all the muscles that are affected - pretty much all of them in the lower leg... Goes on about the details of how they did the MRI and levels of scans etc....
Here is the Radiologists Impression: Findings indicate an aggressive malignant neoplasm. Plain film findings are not typical of giant cell tumor in that the cortex is interrupted, the metaphyseal margin is not sharply delineated and there is a Codman triangle formation. Although there are multiple fluid levels present within the mass at MR, aneurysmal bone cyst is not a primary consideration because most of the lesion is solid and shows vigorous enhancement. I would favor the diagnosis of a telangiectatic osteosarcoma in this instance. The differential diagnoses would also include other aggressive primary bone malignancies including chondrosarcoma and malignant fibrohistiocytoma. Close adjacency upon the anterior tibial neurovascular bundle is significant as is the number of surrounding muscles showing evidence of direct invasion by tumor.

Here is where you feel the kick in the stomach. We read this walking out of the doctor's office on the way to the car. To break it down here are the important parts.
1. I am not a good radiologist. The entire 1st paragraph is the opposite of what I saw on the x ray and all of this information is exactly what you don't want to hear. These sentences mean that it is malignant if this guy is right. Period.
2. Cortex interruption is bad.
3. The "invasion" of the muscles isn't that big of deal, they can cut those out. But the "bundle" and the nerve invasion is a problem for surgery.

So, we are going for biopsy on Monday. But we know that it is malignant. Ok, no, we don't know 100% that it is. But let's be real people, if he is right, it is. We could be struck by lightening this weekend or we could find out that this is benign, that's pretty much the odds.

You can Google the mentioned diseases. There is a possibly it is none of these. There are tons of different options there. But they all suck. It is a "sarcoma" of some kind. Dr. Rapkin, Grant's oncologist, told us when he was going for his biopsy that, "you want anything other than a sarcoma." Trust me, we have that sentence on constant  repeat in our heads. Thankfully, Grant's wasn't a sarcoma. If you'd like to read more www.cancer.net has good information about everything except for the malignant fibrohistiocytoma, for information on that, go to eMedicine or here. This certainly isn't "light reading." I spent the day reading all of this yesterday and felt like I was going to puke most of the day.

To answer the questions we've been hearing.
- "How are you?" see above... mad, heart-broken, worried, sick, peaceful.
- "How are the kids?" We haven't given them the whole story. Plan on doing that today. Thank you for your prayers about that. Gracie knows it isn't good. Grant seems to be unscathed by the idea. In his mind, cancer is just what you do and he isn't afraid of it. I think that's a good thing. Gracie on the other hand, she knows about watching, waiting, praying, and feeling helpless.
-"How is the rest of your family taking this?" see above.
- "Is there anything we can do for you?" Probably. I don't know what it is yet and we will let you know. I've learned that it is better to just ask for help when you need it. I promise I'll ask. At this point, we are just surviving and breathing. Maybe food would be helpful at some point. We went to Subway last night looking like a family of zombies. I saw a friend's husband and daughter there and didn't speak because I just couldn't. Mimi mentioned planning Christmas food this morning and what she could bring and it occurred to me that we are going to have to keep eating. It's the furthest thing from my mind.  I'm telling you, we are just focusing on breathing.
-"Could this be LCH?" or "Is this related to what Grant had?"No is the official answer. But,All of these have differential diagnoses of LCH. I can't help but wonder if there's a connection between this and Grant's LCH.I've emailed Dr. Rapkin and I'm going to contact Dr. McClain to just see what they say.
- "How will this be treated?" From what I can tell for any sarcoma, it will be about 3 months of chemo to try and shrink it. The chemo looks like "big guns" compared to what we are used to with Grant. Following that round of chemo they will do surgery to hopefully remove all of it and the surrounding tissue (This is where the nerve issue is a problem). I assume there will be some sort of bone graft, rod, or whatever to replace the bone and therapy following to deal with that. There is a possibility of radical amputation. Yes, I just said that.  Then there will be more chemo and possibly radiation. It looks like at least a year of fun.
- "What now?" Just got off the phone with the nurse at MUSC. We are going there Monday morning. Remember the customer service and quick scheduling concern? Yeah, they are moving heaven and earth to get all the test done Monday...that's both good and bad. We are going to go down on Sunday and take Grant to Ft. Moultrie so he can do a report on that for school (seriously, we are. More of a distraction than that I give a rip about his report) and then we will go see the Christmas lights they have in Charleston. Monday at 10:30 we go to Dr. Leddy to meet him and hear his 2 cents. Then at noon he goes for a CT guided biopsy followed by a CT with contrast of his pelvis, abdomen and chest. This is all VERY fast and exactly what should be done at this point. The bad news she gave us is that we could possibly not have results until 12/27. That is not going to work. Period. They WILL get us results before then.
We have made contact with MD Anderson and should hear from them today about scheduling an appointment to go there. Our plan is to get the tests Monday in Charleston and head to Texas ASAP. No idea when ASAP is, but it needs to be within the month. I want treatment started by January.

So there you have it. Sorry. Thank you for your prayers. Love, Mel