bendamron's Cancer Blog

March 14, 2008

holding pattern Views: 46

the past week things have been pretty much smooth, she’s been eating much better the past three days, but far from normal. last night she ate a small dinner and then woke up at 1am with hunger pains (for once, pains that are good ones!). i shot up like a good butler would (call me benson) and asked what her tummy was craving. fried egg with cheese on an english muffin! haha! i really enjoy times like this. anything for my love. since all of this began, i must admit that i really enjoy watching her eat. she knows this now, but at first it bothered her a little, and would catch me staring from the corner of her eyes as she was biting into something yummy. i explained my creepy behavior and she understood. i made the fried egg sandwich as she was waiting patiently in her fancy bed. after she was finished, she began talking about what else she could eat! she popped out of bed and started digging around the cupboard. she wanted another sandwich, but opted for some thai pot sticker that toni brought over earlier. it’s really weird, but the sound of her chewing food as the oxygen spits out of her nose makes me smile inside. random, yes.

so i titled this entry ‘holding pattern’ because as things are slowly progressing, she is still very much in the trenches. it feels as if we’re flying around in a really bad thunderstorm and waiting in limbo, searching for a safe haven to land. the toughest part of this has been living it out, one treatment at a time, one fatigue moment after another, and waiting to hear the labs come back. angel’s impatience to heal sparks a lot of tears and sadness. she just wants to kick this cancer to the curb and now! her last infusion was monday of the cetuximab. she wanted to see the lab results so badly, that the nurses had to calm her down and explain that it’s about more than just lab numbers. it’s also about how far she has come. she was reminded that two weeks ago she was so fatigued, in so much pain, and in the hospital without hope. we look back to how terrible things were, and how we celebrate the smallest of improvements, but then snap back to the reality of, ‘damn, we are in the terrible now.’ i know it sounds negative, but it’s a constant on our minds. we are learning to be more patient about everything that involves this disease. when it comes down to it, angel is living this nightmare, while we live our normal healthy lives. i guess i’m also saying that as time goes on, and as angel becomes healthier or not, i hope that our friends and family keep supporting her with the same level of intensity. there has been so much support and love for her, and i don’t ever want it to end. this is a huge fear for her too. i want to thank everyone for all their love, support, cards, donations, fundraising support, and food! angel is way behind on thank-you letters, but already sent out a wave of them last week.

some lighter reading, angel just called with the newest lab results, her platelet is up to 168! (150-300 is normal) remember at the last hospital stay her platelet was down to 12 before the transfusion?! AND after a couple laps around the clinic hallways, her oxygen saturation is at 96 without using her oxygen. 92-94 is on the low end. she might need a white blood cell booster over the weekend before her next treatment on monday, but we’ll see. lastly, last monday, her bilirubins went down again to 2.2! i know that i am bragging, and spending an awful amount of happy energy yelping about lab results and going against the previous paragraph, but i have also seen angel’s physical appearance and her activity level matches her labs. we need to keep it up! she is now with deneen shopping at pcc and then hitting up the bar for happy hour! haha, i wish, more like some decaf coffee or something of that nature ;)

other news, last tuesday angel opted out of the second and third opinions on treatment options until she has her first ct scan from the results of her new treatment regimen. i was concerned at first, i felt this is the time to do this, since she is healthy enough to make the office appointment, and staying ahead of the game. but she’s ultimately the one who has to make this decision. i am okay with this choice now. we feel like something is working. so much that she is finally getting some of the side effects from the cetuximab, the pimple-like breakout she’s experiencing is a positive sign that it’s doing its job, unlike the cold reaction from the folfox.

dr. otero continues to be angel’s rock and has been an amazing advocate for her ever since the switch. he actually pays attention to her (he also calls me by my first name, and not ‘your husband’ or ‘mister’), and is keeping a lookout for potential repeat episodes from what he experienced while angel was in the hospital last. and yesterday, angel picked up and read dr. otero’s name printed on one of her new prescription bottles and said, ‘i love seeing my boyfriend’s name.’ :)

the past weeks, renae’s stay was so helpful and made the time go by too quickly, once again, she out did herself on all counts. she cooked, cleaned, did all of our laundry, cleaned closets, organized, attended doctors visits, and made us laugh out loud many times. i am happy that she got to experience it all first hand, the good and the terrible. it was a wild two weeks for her. angel and i were really sad to have her leave, but now that her visits will be every month we’ll only miss her for three weeks at a time.

one last thing, last night angel accidentally pricked her index finger with her needlepointing needle and it is now infected. it’s a bit swollen and slightly red. i’m keeping a good eye on it along with frequent temp checks to make sure it doesn’t get out of control with fever. the nurse said if it gets worse tomorrow morning, she should head into e.r.. one of the common side effects of cetuximab is infection, and it would just stink if she had to go in for something that seems relatively minor to us, but something that could turn for the worse.

i know i am a little winded and scattered, but i think i dumped mostly what i wanted to share for now.

Posted on March 14, 2008 at 6:32:33 PM by angel & ben ( Link to this post.