Craig has been sleeping longer and harder throughout the days. With throat muscles weak and weary, his voice has increasingly become quieter with words often indiscernible. He'll murmur something and we'll repeat back what we thought we heard. More times than not, we are incorrect and he tries again. Understanding his words has become a slow and concerted distilling process.
After asking us to dictate his thoughts, he'll soon meander from the conversation, too tired to fight his diminished attention span and growing fatigue.
In his words...
9.14.08
C: Hey guys can you take down a few food cravings and notes?
E: Yeah, we can do that. Just a sec.
J: What's on your mind?
C: Food cravings. Pineapple... (thought trailing off)
E: Any others?
C: Oranges, mandarins and nectarines...and other sweeter things. For some reason, peanut butter cookies. And chocolate chip cookies.
J: Would you like to try a piece now?
C: No. Let me rest my gut.
E: Does your stomach hurt today?
C: It's starting to. It's starting up right now
D: It's funny that even thinking of food will stir your digestive juices.
J: That's old Pavlov for ya. It's already starting.
J: It seems like you have more energy, wanting to use the physical therapy bands...Is that your body's energy or are you telling yourself to do these things?
C: Both A and B. My body does have some energy. It doesn't feel like a whole heck of a lot.
E: Is that why you're doing the therabands?
C: Yeah, so I can take advantage of what energy I do have
J: You said you wanted us to take some notes. Is there anything on your mind?
C: (long pause...spacing out. Looking at pictures) Uhhh, I'm stalling now.
(pause)
C: Another food I crave, bread and salad, light salad
E: (Craig staring at the pictures). Do you have a picture you're drawn to more than others?
The top two. (A picture of the family standing in the living room and one of Craig and Jill in a boat in Thailand)
D: Is there anything else you wanted us to write down?
C: That closes me out for awhile. (Grimace and look of pain. Proceeded to rotate hips)
C: Can I have the bolus?
D: Is the pain in your tailbone?
(quiet beep of bolus pump)
C: (Still grimacing) Yeah.
J: Do you feel that the pain is managed now?
(No response)
J: You know I don't know if you want to talk about this but we've been talking about how different your process is to Mom's. As if the cancer isn't enough, you have bed sores and so many other symptoms - different symptoms. It's interesting how different the cancer paths can be.
C: Yeah, how different it is
J: I think that aspect is a hard thing to deal with - how the cancer expresses itself, being expressed in a completely different way for you than it did for Mom.
D: Yeah, it's not predictable at all.
(Craig staring out)
D: Are you still hurting? Do we need to lower you back more?
C: No, no I'm good (said quietly. Finding his voice)
(Looking at pictures)
C: My third favorite is Mom, because I can see it really clearly.
J: At least Craig, you haven't had the experience of falling.
E: Remember, it was back in February when she fell in the movie theaters and you were there to help her?
C: Yeah
J: It was really hard hearing about it in Thailand. Being at work, colleagues not really understanding why I was upset that she fell. I mean they tried, but it was hard to understand. I didn't even know what it meant.
J: She never really talked about her falls.
Dad: No she didn't. She'd say it was scary and would cry but would ultimately pick herself up and move on. After her fall, she walked on in and sat down, determined to watch her movie.
D: With our help. It was the Spiderwick Chronicles
(Aside - She fell while walking up a carpeted, very slightly inclined aisle towards the seats. Without warning, the toe of her foot caught and she quickly fell hitting the wall with her head and arm. She landed in a pretzel position. Craig, Diane and I (Erin) helped pick her up. I used the light from my phone to check for scrapes and/or broken bones. She came away with a bit of a bump on her cheek and head, and a small scrape on her pinky finger. We helped her to her seat and I rounded up a band-aid and cleanser. Out of Mom's view, I vividly recall looking over at Diane and sharing a pregnant stare - the look of recognition that "it has begun". While Diane and I helped her to the bathroom after the movie, Diane said, "Hey Mom. At least your wig stayed on! (despite skidding down the wall)". We all laughed and everything was right again.
Dad: Well it's like that time when she fell on our walk. I couldn't get her up. Fortunately someone was driving by and stopped to help her up; she "picked herself up" from that and got through it.
D: I'll never forget meeting you at the corner of the street after realizing you two had been gone for some time. I walked out to find you. She looked like she had been crying but as soon as we looked at each other, we started laughing and I asked "why do you have grass all over your butt?"
(Aside-it was shortly after this fall that Diane took the beautiful picture of her in her black fleece, rosy cheeks, and her two thumbs up. There's no keeping her down!)
E: Or, at the mall. Boy that was traumatizing. Her feet were moving uncontrollably and too fast for her to keep up. With chest pitched forward and eyes bugged out, she held onto Diane and my hands as Craig walked just ahead. She walked so fast Diane and I fell into V-formation with her as lead. Scary. She was just steps away from taking a tumble.
Dad: Well that fall on our walk, a piece of Kleenex fell out of her pocket and she bent down to pick it up and toppled head over heal.
D: (referring to the mall experience) Mom and I sat on a bench while Erin and Craig went to find a wheelchair for her. She was watching kids, teenagers and she started crying. She said "they don't know how lucky they are". I asked her, "well what do you mean?", and she said, "they have their health". In those situations, you can't tell someone "oh buck up, it will get better", when you know it won't really get better.
Dad: It's so difficult for people to know what to say in those circumstances.
E: I don't blame them
D: All I said to her was "I'm sorry mom."
E: Actually, Craig and I didn't leave to find a wheelchair. It was to scope where the hell that store was only to find it wasn't in the mall anymore. We went to Los Cabos and had dinner. I remember she dropped queso on her shirt, a "Miss your mouth, Mary" moment. She was wearing her purple shirt, white sweater, black slacks... Boy, how I remember that. I remember taking her to the bathroom, too. Then we went to another mall and another store; Craig and I found outfits while Diane helped her dress and undress in the dressing room. We found what would be her favorite clothes that night, and (while we drove home) she was the most coherent, blissfully happy Mom I had seen in months. She was like the old Mom.
J: Is everything OK Craig, it looks like you're grimacing?
C: It feels like I'm getting crumbs on my face.
E: Are you eating something in your dreams?
J: Do you still feel like you're getting crumbs on your face?
C: No
J: Do you remember the time when you stuck a pea up your nose?
D: I remember there would always be a time when either milk or food would come out of his nose
E: It was the pea that came out of his nose from laughing.
D: He laughed too hard and it shot out
J: I remember when Mom and Craig were arm wrestling and she swung him over her shoulder. Wammo.
(some discussion about childhood memories)
C: I'm starting to fall asleep on you guys.
D: What's the Disney movie that goes like this, hums a bit ...baby mine
C: (Stirring himself awake) That's Dumbo. Dumbo.
J: That's a good memory!
(craig fell asleep)
9.15.08
(Jill told Craig about a wacky dream she had about the hospice Nurse Sandy going to space without enough oxygen and Jill had to return to Earth to retrieve more oxygen for her, so that they could "Y" the tanks together (like they do for Craig). Craig immediately called her a "nurses pet".)
J: Seems like you're having a better day
C: My attention span is harder to hold. I can look at you, follow what you're saying and then I'll space out and have to shake my head to get me back online.
C: It's a feeling of delayed reaction. And delayed reaction is caused by a number of things. Delayed reaction to other peoples' questions and to my own questions and thoughts -- that's what I'm talking about. Sometimes someone will ask me a question and it will take several seconds for me to get back to them. What's causing that? I think about it and part of it is my reduced attention span, which is caused by -- I don't know what -- but I think part of it is physiological like my brain's neurons are getting slower to trigger, so I'm not as quick as I used to be. And that's just how it is. I can fee it, you know.
J: That's maybe true.
C: Part of it is superficial feeling like I'm tired... and that's part of it too. It's that I feel tired so that means I'm not firing as quickly as I used to be.
J: Does it bother you?
C: Yeah, it does. It leaves me with awkward pauses in thought and then I have to reconstruct what I was saying quite a number of times. Or I have to repeat what I just said because it didn't come out right the first time. Or it's so soft no one can hear or understand what I was saying.
J: Deb said that you were/are the same Craig, it's just the expression that's hard right now.
C: Yeah, I feel like I'm the same Craig, but I'm dealing with a different set of circumstances which, the combination of, makes a slightly different Craig. I used to be fun. My personality and environment are different. Personalities are shaped by our audience and our environment and what we're doing on a daily basis, so to the extent that has changed, so too has my personality, to some extent. So I'm going through some things that have changed my personality a little bit and that are not as responsive, more forgetful, more tired.
J: Do you feel like you're interested in the same stuff?
C: Yeah, vaguely but I haven't done anything to take the initiative to do anything about it. If I want to read poetry, I should read poetry instead of just talking about it. Or at least have you read it to me.
J: We can do that.
J: Do you like having visitors?
C: Yes, for the most part I do, but this new attention span problem is cutting in to my enjoyment of visitor time. I just want my guests to know that this attention span problem may cause some interference.
J: They know, Craig. They aren't expecting anything. They just want to be by your side.
J: Does it bother you when people can't understand?
C: Yeah, and I have to repeat myself.
J: But I hope you know it's not a reflection of your intelligence. It's just that you're being weighed down by these other variables.
J: How else would you say your personality has changed?
C: I'm calmer, I'm much calmer. And not as anxious about certain things. Not as anxious about work or relationships because I'm really well situated. I don't have to worry about taking care of myself because you guys have that taken care of.
E: Was there ever a time early on when it was annoying to have people take care of you?
C: Off and on it was annoying but you just have to get used to accepting help. I have to let go enough to allow others to help me.
E: That doesn't come easily for Lawlers.
C: No it doesn't.
J: We're very much ‘do it ourselves' kind of people.
J: Your poor feet are purple.
E: You know what I haven't seen you do in a while? Sneeze. (Craig pointed to his nasal canula pumping his oxygen). But even before, apart from when the sneezing was coupled with vomiting spells, you don't sneeze. Wonder why that is...
C: No.
J: I remember a time when he wasn't yawning, either.
E: Yawning and sneezing rarely occur. Mom didn't sneeze either, come to think of it.
C: Just to clarify what we're talking about, the gist of this entry is the sense that my attention span is down (as if to bring us back to the conversation). My attention span is more limited. That's the topic that we're talking about.
(Long pause)
E: How are the depends working out for ya? Would you like boxers as well?
C: Sitting in the depends is fine. Boxers I'll wear later.
J: Do you feel like you've said all you need to say to the people you need to say it to?
C: Probably not. So, I have to get to talking to some of you.
E: I think it's a matter of what you're comfortable with and you may be comfortable not saying everything.
(We pivoted him back into bed)
9.15.08 Midnight
(We just helped C with another "pit crew" dressing change; it's a well-oiled machine. As always, Diane helps hold him up in the front, while Jill tears his depends at either side. Jill and I then proceed with cleaning the wound and applying the new dressing. It's a flawless system that grows faster with experience. He's involved, asking questions of what ointment we are applying next, ensuring we "covered it all". When we were finished he said, "boy that was quick".)
(He brushed his teeth and took his pills...)
(...with eyes still red from coughing on water...)
C: Ya know I really feel for Mom now. What she went through?
E: Really, in what way?
C: Swallowing the pills. They just stay in your mouth and there's little else you can do to get them down. You can't work them back further. I have to gobble more water.
J: It's just incredible how something we take for granted is really a learned process.
C: Yeah.
E: Maybe tomorrow we can try the thick-it powder to give you more control over the water.
C: Yeah (nodding his head)
(long pause)
E: You ready to swing back?
C: Not quite yet
J: OK
(Jill and I assume our positions on the floor right in front of him. The light of his closet accentuates his jawline, temples and dark circles under his eyes. He fiddles with his paper towel and then an engineered hangar contraption that holds his bag o' pumps).
(Craig slowly looks over at Jill and then at me.)
C: Well, talk amongst yourselves.
(We laugh)
E: What, you feel like people are staring at you?
C: Uh huh
J: We have more questions for you tomorrow. You don't have to answer tonight.
E: Questions related to stoicism.
J: What it means to you.
E: How it has been reflected in your life.
C: (long pause and subtle nodding) I'll take that challenge.
J: And, I also have a question for you that you don't have to answer tonight, relating to if, and in what way, cancer has changed your relationships and the way people treat you?
C: Yeah, it has. It had to. I mean you have to wipe me now.
J: But, I mean more on the emotional dimension.
C: Well yeah, it's brought me closer. It's brought me closer to you guys.
E: Yeah, it has.
(Tears welling in our eyes)
E: But you don't have to answer further tonight
(In the midst of our discussion, we notice his nose beginning to bleed under his nasal canula. After applying pressure, the left nostril seemed to stop bleeding.)
J: Your legs are turning purple. We should swing you back.
We put Craig to bed: one person holding his shoulders, the other with his legs.
E: One, two ready go. (and pivot)
(Craig's feet are close to the end of the bed.)
C: Do I need to get up to be higher in the bed?
J: No, we'll just use the draw sheet
(Jill righting the sheets and placing his sheepskin foot pad under his feet and ankles; Erin righting sheets at top of the bed while mechanically lowering the head of the bed)
E: One, two ready go.
(Jill and I pull the draw sheet on either side of his body. One big tug and he's at the top of the bed and centered. We mechanically raise the head to at least 30 degrees to help open his airways; Jill grabs his shoulders while I place the pillow behind him, as well as his blue neck brace. Jill straightens his feet on the sheepskin, and we deliberate as to which hip to elevate. Jill pulls the draw sheet toward her, lifting his left hip from the bed just enough for me to slide another pillow under his hip. She pulls the other side to square his hips. We pull his covers to his chest and ensure his hospital grade night table is within reach. This is our system, our routine. Any one of the four girls follow this procedure without deviation for we all know if we were to do his hip before his head, he'd surely comment.)
Until our next Craigside chat...
E, D, and J
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