Hi, out there. We are still here, still surviving. Once again, I've been avoiding posting. Not because I don't have anything to say. Rather I have too much to say and I've been battling with how much to say, how to phrase it and does it need to be said.
When Gregory was diagnosed in February, Larry's and my marriage was quite finished. Had been for sometime. As juvenile as this may sound, after nearly 13 years together, I still expected a brilliant "ah-ha" moment to rush in and rescue our stalemate. I honestly believed that a partnership should not be as much work as ours was. Cancer entered our lives and everything as we knew it ceased to exist. We made the decision to divide and conquer. I traveled the three hundred miles with Gregory for five months of treatment and he stayed behind. "Minding the store". During that time barriers were broken and bridges were being built. Staying home to care for Curtis and AnnMarie, working and trying to stay sane is no easier than what I faced. I was careful of how I shared my experience with Larry. I did not lean on him for support, knowing that he was helpless to help, being so far away. Also, he was not able to be at Gregory's side. If things had gone haywire, he would have gotten there as quickly as possible, yet I'm sure there would have been regret and guilt, too. I did not want him to feel any regret or guilt for not being able to be with us. As it grew closer to us coming home, I started to open up more. It's continued since we have been closer to home and we have had a chance to be together, occasionaly. This ia a man I do not want to risk losing, without really seeing where it will go. Which means we have a lot of work to do. I do not share deeply personal stuff easily. I keep it sequestered away. Out of sight, out of mind. My heart has been broken, I'm examining it's contents, dusting off the pieces and trying to figure out how to use it again. This man that I've shared a third of my life with means more to me than I allowed myself to acknowledge. I love, respect and trust him, more than anyone else who has ever crossed my path. I have no expectations, though. I've realized that no matter how this pans out, it will be OK. Not without giving it a chance, first. We have lost the luxury of looking to the future. We are now taking each day as it comes and seeing where it goes. It's all we can do, at least for the time being.
I've shared more than I intended. This is what's it's all about, though. The last two months have been about adjusting to not being in Seattle. Trying to find a grove with Gregory's care and slowly coming back to HomeHome. It's been a mental shift that has been very hard for me. I did not plan on needing to focus so much of my energy on Gregory's care. The last few weeks I've been trying to weave what we've experienced, what we are currently going through, with the life that Larry, Curtis and AnnMarie have been living. Coming to terms with the simple fact that I cannot compartmentalize Gregory's illness. It will need to become part of "us", meaning all five of us. I'm also worried about how Gregory will adjust to me not being at his beck and call 24/7. There will be times when he will need some patience and times when I will not be available for the other three. There really is not much I can do from here, but we can talk about it and I can react to his non-emergent needs with less urgency. I still am not sure when we will be HomeHome, I hope it is soon. This really is the best place for Gregory, for now, which is the bottom line. I really miss my family, though and cannot wait to be with them.
Gregory has been having such a hard time with his Gut GVH. Last Wednesday he started throwing up late afternoon. For the next several hours, we paused his feeds, had some anti-nausea meds and he continued to puke, everytime I turned his feeds back on. I think he puked four or five times, with his nG tube coming out with the last one. Knowing he hadn't had any fluids for several hours and wouldn't until we had a new tube placed, late the next day, I called the doctor to see if we needed to come in for IV fluids and meds. Since the tube was gone, there would be no meds, either. Surprisingly, he recommended that we stay home and come in the next morning. We had labs drawn. Between Doc, nutrition and myself we worked out another game plan. We decreased the concentration of his formula by 50%. This was started again at the slow rate, building up to his maintenance rate. He also suggested that we decrease his Beclomethasone by half. This is one of the topical steroids that Gregory takes orally. The drug did not seem to be working and Doc mentioned that Gregory may be experiencing drug toxicity. It's a med that needs to be tappered, not simply discontinued. So he is currently twice a day, versus four times a day. With the other topical orally steroid still twice a day. (I should mention that before Gregory started throwing up he was experiencing belly cramps, gas, frequent diarrhea and headaches.) Since we have started the new feeding schedule he is once agian improving. His caloric needs are not being met, but with the steroid weight and his medication supplementation, there is little worry. He did take a small dip in his weight between last Monday and Thursday. From 15.4 to 14.8 kg. I haven't had a chance to question doc about this yet, but his ANC is diving. I'm hoping that it has been artificially inflated and the current trend will stop. Last Monday it was 7300ish. This Monday it was 5400ish. Thursday it was 2616. He's also been throwing small amounts of varying white cells that I haven't seen on his labs for quite some time. Doc says the other cells are not to worry about, but I forgot to ask about his ANC. We go in again on Tuesday so I won't worry too much about it until I see Tuesdays results.
Friday was my day to do grocery shopping. Mom came out to sit with Gregory. There were several things on my list that I did not think I would find in Post Falls. Mom suggested I hit Fred Meyer on Sullivan. GREAT idea. It's not too far away and has a bigger selection. Boy, was that a mistake. I walked into the store and was immediately hit with tremondous amounts of over stimulation. There were soooooo many people, way too much point-of-sale stuff, holiday decorations, holiday promotions, too much light, too much noise and just so many people. Add to it the fact that the store has been rearranged since I was last there. I'm not prone to anxiety or panic attacks. I was having a really rough time of it on Friday. It was super cold out, too and I was dressed for it. I should have taken my coat off, but the my coat, scarf and had was added security. By the time I got to the check-out stand, I had sweat dripping down my back. I will be sticking to Post Falls grocery stores until the holiday season is over. I'm not about to put myself in that situation again. Not yet. Not to mention the germ worries, too. It's really hard to keep a three foot radius when it's that busy. *shiver*
Needless to say, the last few weeks have been so incredibly emotional. My well of strength finally runeth over and I've cried more in the last week than I have the last nine months before. Which is not a bad thing. I knew it would break eventually. I find myself quite teary eyed, though. The smallest comment, action or thought will cause my eyes to bubble over. I know it's part of the whole "broken heart, now let's use it again" thing. Gregory made a wish on a star the other night and his wish was to have Daddy, Sissy and Curtis come out to the lake. All five of us were together for Thanksgiving and it truly was the greatest Thanksgiving, ever. Super simple and totally roughing it, but we were all together. I must admit, we even used paper plates to dine off of. *hangs head in shame, but not really.* The most important people in my life were with me. Starting to try and figure out what's next and how to get through it. Moment to moment. I'm spent, guys. 'til later, gotta jet.
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