What a GREAT day! Don’t ask me why or how, but Gregory made it through day two of Cytoxan smashingly. I was dreading today. His infusion began promptly at 1:00. 2:00 rolled around. Me, getting anxious. 2:30. Gregory is happy, playing and hungry. Me, still anxious. 3:00? Still no signs of nausea. He had a heavy duty dose of Zofran (no different than yesterday) and that was it for today. Not one sign of upset belly. In fact he was hungry and Papa made a fried shrimp run for him. The kid LOVES shrimp. There is an Ivar’s in the Northgate mall and that is where we have been getting our shrimp for Gregory. He proceeded to polish off fried picnic shrimp, fried jumbo shrimp AND fried clams. All with Tarter Sauce. THEN……. Ice Cream, Popcorn and cookies. Are you sure there aren’t Steroids mixed in with this batch of Chemo? *shrug* You never can know what to expect. I just know that I am incredibly grateful for today.
A friend of mine from WAY back visited, today. We went to school together, starting in the second grade and were very close grade school friends. We haven’t seen each other for more years than I’d like to count. She spent nearly the entire day with us and it was so incredibly comfortable. Like the years between just melted away. LENA!!!! Thank you so much for coming down. Give me a ring when you are ready for another trip!!! ♥
I noticed something I need to pay attention to, today. I am NOT a good source of fun and giggles, for Gregory. My job, for now, is paying extra-super-close attention to his every breathing moment. I am looking, waiting, anticipating, observing, deciphering……… The nursing staff cannot be with him 24/7. I wouldn’t ask them to, either. I’m negotiating, cajoling, navigating, gauging…….. I feel like a Large Fish Fisherman. You know the kind. Picture someone off the coast of Hawaii, expertly reeling in a huge Marlin. Sitting in one of those fancy chairs that are secured into the deck of the boat. Giant fishing reel bent nearly in half. Feeding the line. Trying to gauge when the Marlin is tired enough to be reeled in, easily. Let the line go slack……… gradually reel it in……… feed the line out……….. let the fish swim for a while………… almost lose the fish off the hook……….. quickly jerk the line, reel it in a little, make sure the hook is secure………. trying to judge when the Marlin is ready to be tuckered out and join you on deck. I feel like I am orchestrating Gregory’s experience. Is he tired, is he hungry, is his bladder full, does he need a new activity, a new movie, What does THAT facial expression mean?, constantly checking for symptoms, does he need a break, what would make this transition easier… The myriad of things to consider is overwhelming. Are his toys/activities easy enough for him to handle, post transplant? Will he be able to lift and use them? If he looses his grip on an item, will it injure him, if he drops it on himself? Is that food item going to hurt him, with the coming Mucositis? Is that a new bruise? How old is that petechia? How pale are his ears? The list is endless. It’s not over protection, either. He is three. He does not have the capacity to tell me what he needs. I have to be the referee. Always with his best interests in mind. It does not leave me with much left to laugh and giggle with him. When it is just the two of us, it is easier. Which does not mean I prefer it that way. When other people interact with him, they are not able to read him like I can. After all, we have been connected at the hip since the end of February. I can read Gregory like a well loved, large print, primer. “See Gregory run. Run, Gregory. Run!” I spent most of today in a constant state of watching him interact with others and guaging how comfortable he was. If there were a hidden camera, on the days when we are alone, you would catch me with grins and giggle galore. On days when we have visitors, I realized today, that I am a frozen mask of watchfulness. Doesn’t mean things need to change. It’s simply an observation I made, today. Something I am aware of and can now catch myself doing.
Another day of Chemo. Melphalan. This one’s pretty heavy duty, too. Today’s heavy duty dose of Zofran was 2mg ( I think it’s mg). Tomorrow’s dose is 6mg. Three times the amount. It will be infused at 10:00am and only takes 15-30 minutes to infuse. So. By 11:00 tomorrow, most of the chemo will be over. He will be receiving Methotrexate post transplant at staged days (24 hours post, day 3, day 7 & day 10, I think. I may have one dose too much.) The purpose of this is to snag any remaining bone marrow cells, that are Gregory’s. The goal is to eventually have 100% donor bone marrow. If there is any of Gregory’s original bone marrow remaining, he will relapse. It’s just a matter of when.
Which brings me to: No matter how well this turns out. No matter. For the rest of his life, there will be the threat of relapse and secondary cancer’s. Cancer’s that are directly caused by his treatment protocol. While this is a huge thing to be thinking about/considering at this point, it is the reality. I’m fiercely working on being at peace (how does one “work fiercely” at being “at peace”? Good question) with the reality that I will forever live with the fear of “the other shoe dropping”. Which is a reality for EVERY cancer survivor. Not to mention after effects. NOT going there. Not now. Not until I need to. Yet, this “forever fear” I need to get well in hand. I need to learn how to embrace with joy and celebration when we get the news that he is 100% donor. Without the lingering fear of, “What’s next?”. I need to vividly imagine what a relapse, secondary cancer might look/feel like. Imagine it at every step of his life. Every step of my life. In order for me to put it away, I need to do this. Otherwise, the fear and worry will eat me alive. This is how I deal. I work through it in my brain and then put it to rest. Lock it in the deepest, darkest cellar of my brain. Yet it is accessible, when needed, in order to be comfortable with the reality, should it happen. It’s a way of being prepared. If I am prepared, I can handle anything. Throw me a curve ball and forget it. I have an out of body experience, go a little numb and come back to reality, when I can deal. I guess that’s what shock is. Right? I don’t do surprises, either. Go figure. Can you say control freak? Maybe. I just know how I tick.
Which is another reason why I obsess over stuff. I’ve been stuck on TPN. When will it start? What will it look like? What are the thresholds? No one has really been able to address this question, until today. Gregory is on what they call hyper-hydration. In order to clear the chemo out of his organs, quickly. The doc told me that it is extremely difficult to do TPN and hyper-hydration at the same time. Which made complete sense. I get it now and I can put that issue to rest. There is no need to get concerned, until they are. Done.
Off topic: Discoverd The Dresden Dolls & Amanda Palmer today. GRLZ!!! Why, oh why, did you not push this on me? Or did everyone just assume I was so hip, that I’d been listening to them for ages? I’m officialy hooked and addicted. want.more.tracks. not.enough.albums.
I finished My Sister’s Keeper. It was good. Heartbreaking. So completely different from our Odyssey. This is the only reason I was able to read it. The only commonality was a bone marrow transplant for Leukemia. Totally different Leukemia. Also, the BMT was not a pivitol part of the story. Currently reading? Bad Mother This genre is quickly becoming a favorite. What’s next? Running With Scissors (Thanks, Miss Mary for turning me on to Augsten!)
Time to settle into cuddling and sweet dreams. Requesting good juju for tomorrow’s chemo. It sounds like a big one. Love to you all!!!!!!! Seriously. You. You. Yes, you, too. Especially you.
I leave you with this: Remember my plea for help in captioning a photo. Well, one of my favorite LJers ( is ♥)really stepped up to the plate. I LOVE THIS!!!!!! For those of you who can’t decipher LOLspeak: I have cancer. but I is the awesome. I’s will kill the cancer.