July 13 - 24 2009

Monday, July 13, 2009 10:28 PM, EDT

News for me is fine, but not for Cody - so sensitive souls beware...

Radiation is a hassle, another bizarre subculture in the world of oncology. Of course those who work there are a special breed, and generally great people. The process is quick, my skin is hanging in there [we thought it wasn't, but it is just a bit swollen still from surgery...google "lymphodema" if you really are curious, mine is mild...] So it's keep up with the daily grind and hope the side effects are late and mild...till then I feel nearly human, I just crap out earlier in the evening than I would like...that may have more to do with trying to keep up with the boys and keep Logan from trashing the house!

As for Cody, he took a serious turn for the worse last week. He contracted MRSA and meningities [a fungal version] and the cancer blasts are rampant in his blood. His body simply cannot take what is happening. It turns out he has the most aggressive form of ALL, and a chromosome that is the most ill fitted to recover from it. He had a stroke and his brain is filled with blood, they took him off life support Saturday night. Damned thing is the kid is still hanging on - that's just like him, to be stubborn enough to hang on a bit longer. I wonder enough why I got picked for this disease at this stage of my life [a good stage, by the way!!], I certainly will never be able to get my head around why kids must go through it. Damned disease doesn't give a crap who it gets, those of us left are to live, learn, and keep searching for a cure in their honor I suppose. Kick in some prayers for Cody and his mom - not sure how she will fare when all is said and done; she pulled it together for him, not sure what she'll do without him. Damn this disease.

I feel badly ending on that note - but days like today just sit heavily. Time to turn in and keep the fight going tomorrow, for me, my kids, and my "work kids". We're all worth it.

Wednesday, July 22, 2009 4:33 PM, EDT

A sad Cody update...

Cody died this morning. I got the phone call when I was leaving a court hearing to head to my daily radiation. I guess he finally decided it was the right time to go - this rainy day seems an appropriate choice. People keep asking me how I'm doing, as if his death makes my cancer scarier or my cancer makes his death sadder for me- but really neither is the case. His death is sad because no child deserves what he went through, nor does his mother and sister deserve the grief they will hold in their hearts now. Cancer just sucks - it's a wicked disease, simple as that. I guess I'm not so graceful accepting my identity as a survivor yet - treatment keeps your fists up in a battle stance fighting to feel good or normal again, with the fact that you have the disease always lurking around in your brain. I'm sure someday I'll trade in my battle sheild for a survivor's ribbon...but today, I like many others, battle on.

Fortunately as I was coming back into the office with Cody on my mind, I peeked in the cafeteria to see Logan's face covered in sloppy joe sauce while he was two fisting this apparently really good lunch. No better sign that life does go on, and for every tragedy in this world there is plenty of beauty, too. Just be sure to keep an eye out for it.



Friday, July 24, 2009 9:05 AM, EDT

Well I have officially managed to have all my doctors tell me "I've never seen that happen before". The other night I broke out into a lovely bumpy hive rash that basically spread from neck to toe, with my radiated area bright red and fiercly itchy. So when I saw my Radiation MD yesterday morning, and she saw how far and fast the rash spread, the famous words out of her mouth kept my standing as a medical enigma in tact. Apparently my skin is just plain pissed, and wants me to acknowledge it's importance as a vital organ. So it revolted against the combination of tamoxifen and radiation. [She said every drug I have been on has harsh skin effects, so now my skin is just shot...] I am now off tamoxifen until after radiation, and off radiation for a week for my skin to regroup. Though it will be nice to not be running to the MD every day, it was very disheartening to stop treatment just weeks away from being done. [To give a clue how intense the hives were, I had a total of 175mg of benadryl in the last 18 hours, and I was not passed out on the floor...you can still see the shadows from the hives this morning] Feeling much better today...what doesn't kill you makes you stronger, or gives you a fiercly itching freakish looking rash so that you stop pushing your luck. The way I see it, I should be able to move mountains by the time this is done!