#acutelymphoblaticleukemia

[mcgonagle]

Outpatient - Day 2 Quietly Steaming

September 19, 2013: Here I sit at 4 a.m. again; wide awake. AFTER having a conversation regarding our need to do something because I need to sleep. Up since 2:30 yesterday morning, I couldn't stay awake past 7:30 last night. Sound asleep, Allan comes to me at 12:15 a.m. to put lotion on his itchy rash ("I'm having a reaction and I need something on it"). I get up. I find the lotion. I go into his "sanctuary" and I put lotion where he indicates lotion is needed. I go back to bed. 2:00. He wants to take a shower; it's all ready and he needs his arm wrapped; he can't find the Press n Seal. I mumble that I don't know where it is (I'm sleeping soundly again, mind you). He says, "okay, I'll sleep some more." 3:00. Sleeping soundly---again. I hear talking-force myself to the surface again and say "what?" "It's my fault-I have the shower all ready and I can't find the stuff to wrap my arm." I get up. I find the Press n Seal. I wrap his arm. He gets in the shower. I stay awake because that which is wrapped must be un. 3:30, he's out and wants the arm unwrapped. Of course it sticks well and I have to get the scissors. He is now sleeping peacefully at my side and I'm fighting the urge to put the pillow over his face. Sleep? Why do I need sleep? Pish; overrated. But seriously, I do want to be supportive-hard to do on little to no sleep. And today, while he takes numerous naps I have the following: *Nurse coming to take Sissy's PICC line out (yay, but have to be here); *Delivery of home care supplies for Allan (have to be signed for); *Nurse coming to readmit Allan to home care; *Have to get out at some point to get supplies for cleaning cat boxes/bathroom (he's now complaining that it's starting to smell - no shit, Sherlock-every day that I had to clean and work on it you insisted that I come hold your hand in the hospital); *Have to do laundry; *Have to change the bed (now he's complaining that it's cruddy (definition-crumbs); *Have to attend to the pets (feed cats; walk dog). *Have to listen to numerous, random "fuck"s and "shit"s and try to decipher which ones need attention and which ones are just random, nameless bitching. *Have to attend to numerous requests for help, even for those things that can be done independently. *Have to prepare food that he will eat; medicate him; feed Sissy. Wow-tired. Even as I gripe, I watch him walk and it's very difficult-balance is off (way off), he shakes like a leaf (fatigue? loss of strength? lack of nutrition?). He's semi-afraid to eat for fear of constipation returning. Was beside himself last night as he'd only had one bowel movement yesterday and "I can't go through that again." I pointed out that he'd had one bowel movement and it's not time to panic. He's getting numerous medications to help prevent a return to that state, and I'm giving him full fat dairy to lubricate things, and increasing his fiber. Enough-more later perhaps.

[mcgonagle]

Outpatient - Day 12 Sittin' in the Clinic Watching all the Peoples Pass By...

September 4, 2013: Our weekly trek to Karmanos - left the house right at 8, on the road, trucking along, through Howell; through Brighton...coming up on Kensington Rd....and a sea of red tail lights. Bummer. Had thought we would miss the morning traffic, but we just caught it further east than usual. It really was just volume of traffic and many cars entering the highway at each exit. Finally got to 696 and hit a slow down there as well. That one turned out to be a vehicle we couldn't see on the westbound side that was apparently on fire. And, of course we all had to slow down so we could look at the smoke and the firetruck (cuz we couldn't see anything else...). Finally got here (30 minutes late); sat in the waiting room for maybe 15 minutes and came right back to a room. We have been in Room 6 since about 10:15 this morning (it is now 4:19 in the afternoon). First we had blood drawn - then we waited for results. We also waited for the chemo to be reconstituted in its warm bath (I think I'm a little jealous-is that weird?). The Nurse Practitioner for Dr. Schiffer's group came in, did a quick "touch base" and then back out - it had been determined that Allan needed a transfusion (hemoglobin is at 7.9) and that the first unit would run before chemo-the 2nd unit would run after chemo (since we have to stay an hour after chemo anyway). 2 Units of Blood! Allan is almost skipping down the hall - almost. He looks forward to more energy tomorrow and the subsequent few days as a little extra dose of blood typically makes him feel pretty good. On Tuesday, we finish the first Cycle of chemo! Wahoo!! However, the celebration will be confined to a "Day 28 Bone Marrow Biopsy"...followed on Wednesday (and Thursday, and Friday, and Saturday) by the beginning of Cycle 2a. And we've now figured out that we'll have to allow 2 hours to and from due to the unpredictability of the traffic...last week was no problem-appointment was an hour and a half later, school hadn't started, and folks were likely squeezing in that last vacation. Anyway-will likely be too pooped to post later tonight, so this is the post for today...I wonder what Sissy found out at the Wound Clinic today...? Later-

[mcgonagle]

Karmanos - Day 13 Message from Allan

I woke every hour on the hour, having to empty my bladder, from 1am till 4am! Probably the best way to describe my feelings … I’m PISSED! Then the nurse’s assistant came in to take vitals. Bear- like I stared quietly, waiting till she was done, and then of course she asks "how are you?" Thinking nothing good here to say, but it comes out … "I’m tired! Angry!! And hungry!!!" "Is there anything I can get for you?" "No." About five minutes later she returns and I immediately, apologize for being so gruff. "No reason needed", she said. I hadn't noticed, but she was carrying a bag in her hand. "We keep a sandwich bag for patients that get hungry during the night, it’s nothing much, a turkey sandwich, chips, and applesauce … would you like it?" How quickly a small act of kindness changed my attitude. It’s 5:45, a little late for me … but time to get out of bed and walk some laps! Life is Good!

[mcgonagle]

Karmanos Day 4 - Evening

Another long day; AN headed home this afternoon so that she could be home for her daughter's birthday tomorrow (and miss the rush hour traffic heading out of D-town...or is that "Hockey Town"?). Some rough moments today; got consent form for the clinical trial of Marqibo and read through it...sobering. It's one thing to read about chemo and talk with others about chemo, acknowledging that it is essentially very targeted, focused poison (thanks, Kevin) that will be coursing through one's bloodstream. It's something altogether different in feel and emotional response to sign a piece of paper giving someone permission to put that poison in your body. After HB signed the consent; we walked the rest of his mile (7 laps this afternoon) and talked. Each step in this process makes more real the little tiny cells that are making him so exhausted and lacking in energy. We talked about the need to get some things in place...Wills for example. Never did 'em - we were very into denying our mortality. Completed the Advance Directive and Patient Advocate paperwork last week and I thought THAT was surreal...today took it to a new level. So, as a friend shared with us: "Plan for the worst; hope for the best". I guess that's where we are now. In that spirit (the "hope for the best" part), we had a Middle Eastern picnic (on HB's bed) from Bucharest Grill on Park here in Detroit. Menu looked yummy and they deliver...SCORE! We ordered Hummus with Marinated Chicken; plain Falafel; Cheese Pie. Of the three items, the Cheese Pie was the most delicious. The Hummus and Chicken was okay. The Falafel was like little tiny hockey pucks. We have never seen Falafel so over cooked--it was inedible. Blech. May be truckin' in some Woody's on Friday... HB just had his first blood draw through the PICC line-it was divine! No muss, no fuss...NO PAIN! So...as we walked today, I started visualizing the leukemic cells as the little blue monsters that Pac-Man can eat. So what we're doing is turning those little monsters in HB's blood into blue monsters that are killed by the drugs. Bwahahahaha! 'Night-see you in the morning-.