2002 Story Set
| April 17, 2002 Today was spinal test day. And my son has been building up his anxiety all week. It is usually another long day at the hospital. I got up, bleary-eyed and scanned new photos into the computer, answered email and sipped my morning cuppa. I watched Susan Gravor on QVC (traditional Thursday AM activity) and find I already have everything she is showing that I might want. I have already decided to run metal poles the length of the third bedroom that is now nothing more than a walk-in closet. I have rolling clothing racks but can't seem to find any new ones! I think chain hung from the beams can support the poles. I have wardrobes in medium, large, XL and 1X, although most of those I took out. Something will fit me regardless of the state of my waistline. I want all items in one location for rapid comparison. I have wanted this for 18 months. It must be moving up the to-do list by now. I find an outfit (one that was on the air today) and it is a large and should fit. (In fact, it spends the day falling off.) I shower and slick back my hair, slick on some makeup and wake up the kid. We packed up. I brought magazines, book, Pasta Anytime and Medifast expecting to be in the Day Hospital for hours on hours. And my son goes in NPO - nothing by mouth. We arrive, and I am reminded that I have a few tasks undone. Like get the duplicate registration for the van since I have managed to misplace my copy. I am driving said van. And get the "Nov" sticker for the new truck since it is using the old plates off the old truck that declare that my truck's registration expires in March. And figure out where on Earth the unemployment stuff is since I have not received anything (like a check) as yet. Shades of past misdeeds on their part - this time they will pay me! And last of all, finish the HIPP application for the state to pay my son's insurance - tons of paper work. Why there is so much is beyond me but I should finally have most of the forms from the various places acquired. One more to go. There are the thoughts running in my brain as I drive over the busy Dunbarton and down a crowded and busy University Avenue on the way to Stanford. My son has brought (and carried himself) his G4 laptop, just in case. I am a bit leery since he is usually unconscious after this procedure. He also has his heart rate go south, requiring me to run for coffee, Pepsi, Dr. Pepper or Coke and suffer a mild anxiety attack in the process. I have run through $200 in cash this month and have $20 in my purse, which means that last night we had to forgo Togo's so I would be able to feed him after the procedure since I had not managed to make it to the bank. Which would explain the Pasta AnyTime, the instant oatmeal, cups, tea bags and popcorn in my rolling bag. I am prepared. He is also due for respiratory therapy. This is Pantamanine (I have no idea of the real spelling) which he inhales. This lovely drug is to prevent pneumonia while he is undergoing chemo. Every four weeks we get do this. I am out of the room during this procedure that is done behind a sealed door. He has stopped throwing up during this procedure, so I normally use this 15 minutes to fetch my coffee. Every Thursday during chemo, I get my treat. A Starbucks 16 oz (double) decaf Mocha no fat no whip. Weekly. Like a blood transfusion. $2.95. And yes, Starbucks is in the hospital in the Pediatric Cafe. They had a machine there before, same woman, and had the same thing. We just didn't have a Starbucks cup. They also were only open for two hours in the morning so sometimes I would miss. I love the fact that they are now open for hours on hours. We check in, quietly for us because the waiting room is crowded. This is an over-booked Thursday. They grab him almost at once and weigh him and check him into Room 1 in clinic D, a room with a sealed door. Then there is a halt and recheck. They tell me that they are going to access him in Clinic D instead of the Day Hospital. OK. Except it has been awhile. And then there is a discussion. Pantaminine can cause the heart rate to drop so they decide that it should be held. Do the procedure first. This took a bit to decide and set up, during which, having driven over the Dunbarton and then down University Avenue on one cup of coffee and nothing else, I decide to run to the restroom. I have to move a doctor and RN out of the way because they were leaning on the restroom door in conversation. I, having given birth with my legs in the air and a team of nurses watching from the nether end, have no inhibitions about asking them to move. This holds no embarrassment for me. Besides which, I am in a hurry. I do my thing and race back to the room. They are about ready to access. OK. Bring me the cold spray. (Momma mans the cold spray.) It takes two insertions to get the access working. This is a 1.5 inch 20-gauge needle stuck into his chest to the sub-dermal chest port. He winces. I watch. The watcher does not allow too many pokes or too much pain before sounding off. This may make the nurses nervous, but I do not care. I am a hovering angel protecting my fledgling. The problem with the clinic is that the tables are designed for 7-year olds and my son is a 6'1" 20 year old. His feet don't hang off the end, the table ends at the back of his knees! There is also a concern that we can't get a table for him to curl over when he sits up for the spinal access since the table in room one is of a fixed height. While they decide all this, I get to run for coffee. This means a screeching halt while we figure out where to put him. They put him in the waiting room, which is so full I put him out in the hallway. He pops out the G4 Laptop and I grab a magazine. His access is hidden under his shirt. They are doing 10 procedures and are backed up. They come out about 11AM (we arrived at 9:15AM) and send us to the 2-bed treatment room in Clinic D. He has the bed by the door. The child in the room wants the light out, so we are in the dark. One harried nurse is being a little too efficient. I KNOW what I need to position him. A footstool, the bed lowered, one pillow and a rolling tray. The doctor steals a rolling tray from the Day Hospital. The footstool is in the hallway (it straddles the bottom bar of the rolling table). We find the lever and lower the bed. (Hey! I do not work here! Cool it!) They hook him up, push in the chemo and start the Verced. He gets chemoin an IV push and then pills today - rotating pairs. We keep the Verced to 6 units, the Lanocain to 2 units (in the spine where the needle will go). He is super-sensitive. His heart rate starts out at 65. He has been lifting weights for a couple of weeks now and has a low resting heart rate.( I get hysterical at 40. So do the doctors.) So far, so good. They put on the finger monitor (pulse and O2 sat). Oxygen is handy. We are on the table by the door and must roll it forward toward the door since the doctor has to get on one side while I and the rolling table are on the other side. The other patient needs the door shut because there is a screaming child down the hall. Nurses come in and out (constantly) and it is a distraction and a hazard becasue the other nurse is beside me and next to the edge of the door as it opens. Good thing the fire marshal isn't in here! After he is loopy enough they decide to go in. I remind them - 5" needle. The doctor decides to try 5" but doesn't like it. After failing to "get in", she withdraws and switches to a 3.5" needle. Still no joy. We are pace-breathing my son at this point. He tenses when it hurts. I am rubbing his shoulders and arms, holding him in position. A nurse is holding his hand and rubbing one arm. We are all telling him not to pant. After three tries, we send for another doctor. She wants the 5" needle, we preposition the boy and in she goes. Success at last. He has cried out only a little bit and at one point the nurse, one doctor and I were all leaning into him and chanting "breath deep". Pretend you are giving birth. Worked for me. (This leads to us all making comments as to how well this worked during our actual deliveries. Epidurals are good.) We are done. He is zonked. I settle down, we push the bed back in place, I drag up a chair, pull over my suitcase (to put my feet up on) and grab my book. "Bridget Jones's Diary". Of course. He sleeps (under a warm blanket) and I read until my legs are numb. By 1PM we start trying to get his attention. By 1:30 we pull his shirt over his head, put his shoe back on (he wanted ONE off, not both, just one) and walk him back to the room for the Pantanamine. They had a wheelchair for him, while he preferred to lean on Mom and walk. They zap him. I spend the time hunting for his hat. It's the hat his brother got him and it has a tendency to wander all over the place. It is missing. A nurse checks the laundry. There is already another child on the bed. Another child is screaming. I check the suitcase and his computer bag. After the door is reopened, he tells me it is in his shirtsleeve! He gets it out and puts it on. We walk out under our own steam to the pharmacy and get his $6000 GCSF and his Prednezone. COBRA has kicked in. Good. (We had a 48-hour interrupt that prompt phone calls and mild hysteria last week.) He decides to walk (limp) down to the car in the garage rather than have me pick him up. We now know that we have 52 more weeks of treatment. In nearly two years (18 months) we have completed 68 weeks of treatment. By next tax day, we will be done. Barring any relapse. So far, he has been clear since week one. I drive him home via Togo's and we get sandwiches and sodas (lemonade for him) and bags of chips. Neither of us had had anything to eat all day and it is now 3PM. I settle down to Rosie and Oprah and he waits to take over the set and run the Iron Monkey - martial arts movies he had me rent for the day in the hospital. (The clinic has no TVs and no Video set-ups.) I check email, watch/listen to my shows and prepare to flee out of the room. Another Thursday. But today we will skip Team in Training, since he needs to lay down and sitting in a car for 120 miles will not work today. Instead, he sprawls on the couch, flinging my magazines and pillows in all directions. He is nesting. Except for forays to the bathroom, during which mother is a portable walker, he will remain there for the rest of the day until he flees to his bed. I start the pills. The GCSF shots begin again toimorrow. It has already been a long day. |
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