Bye, Bye Metheldrexate!

March 22, 2002
        My younger son had his last scheduled spinal chemo about two months ago.
        So Wednesday, I was prepared for a long Methyldrexate day at the hospital. The day where first they get enough fluid into him started by about 10AM (and I shove bicarb into him the night before) and when liver levels are OK, they put thisyellow stuff in (hard on the liver) and then push fluid like crazy (bolis IV) until (9:30-10:00 PM) and then hook him up on a portable IV bag (that little devilish contraption) for about 36 hours.
        Since the bag is a 16-hour bag, this required three trips back and forth to Stanford to switch bags. And get a few blood tests along the way. A lot of terror (when the pumps failed - which happened) and a lot of driving and a disruption in my work (I was working at home those days, dodging road trips, typing until midnight to keep my work on schedule. And of course, on these days my son was sleeping in my bed - so I could hear the litle pump alarm.
        Well, last week,, they forgot to tell me that we could stop this now. They even called in a bicarb prescription, which Medical DOES NOT COVER BY THE WAY - WHAT'S WITH THAT? I went and got the Bicarb and shoved it into John last night. (Wednesday.) I also got the big blood test special (lots of tests) at Unilab. Hopefully United Health Care will get them paid. (I changed insurance in January - and they are having trouble getting their act together. My son is 20 - over age - but disabled and on State Dissability- so still covered. Synopsys is still beating them over the head.)
        And he didn't need it because he HAS FINISHED THE METHYLDREXATE Chemo! We found out after he had been through the inhale therapy that prevent pneumonia. They said his lungs were clearer today (Thursday). He has had a nasty running nose and flem-producing thing - a cold - a virus - or allergies - we have no idea - but no fever. Now he is better.
        No more 12-hour days in the hospital! Of course, since they had not told me ---- I had come prepared.
        I hauled (and I do mean hauled) two laptops (the G3 for me with the Movie Magic screenwriting software and the G4 for him with the computer games of choice for the week), food (pasta anytime, tuna, chips, candy - sour strips) and drink (two 24-oz diet Pepsi bottles and fixings for coffee) and a couple of books (two novels for me - I am clearing my backlog) and magazines (catch up reading) and three video tapes (for desperate moments - the TV in the children's wing will drive you crazy and daytime TV is HORRID!)
        I hauled them back out! My arms are tired! Talk about a workout!
        We are checking - I may be stopping the GCSF shots too ($6000 a refill so that is good news - for the insurance company and Medical).
        He is still on weekly chemo - but all short stuff (some doesn't even need a port access)
        And in 4 weeks we will do a surveillance check (draw spinal fluid and test it). Why I am dying my hair every three weeks now as I wait in stark terror.
        Of course, on arriving at the pediatric hospital parking lot, long a zoo, source of much damage to my old truck, where I try to get there around 9AM to have any hope of finding a parking space and drive the van because it can turn on a dime and I can park anywhere, they had changed things!
        We get a ticket to get in. (Since he has a wheelchir, we have been slipping in free.) We now pay to leave. Six hours is $5. More then that is $10. And if you leave after 10PM - you must pay for a ticket at the machine that only takes CASH. If you are going to Children's Hospital, you get a get-out-of-jail-free card. But you are not supposed to get more than one in a day.
        Well, on these long days I used to bring him, stay until he was OK and hooked up, and flee to work. Then I would return about 5-6PM and sit with him until we left. Which would mean we would have been leaving after 10PM and I would need to have cash with me that the machine would take. There is a Wells Fargo across the street and up a block so I could plan a bit and survive. But it is an added complication.
        No more in and out it seems, or you pay for it. NOT FAIR! "Well, we are still working the bugs out," they told me. Indeed they will be! One trapped irate parent is all it will take! Credit card payment needs to be there!
        I had been planning to run the stock option execute/sell paperwork to Synopsys (takes a lot of paper to get laid off) and try for a FAX machine either there or at CISCO (my older son) to transfer my purchased stock to my CMA account. The stock option and the stock purchase will fund me until I return to work. If I return to work.
        I had immediately realized in the parking lot that morning that this was a no-go. Have to do it tomorrow.
        So imagine our delight on being told about the change in his status - I would get to do those things - all this running around - perfectly fine! Golly gee!
        We proceeded into the parking lot - which was - ta da! - nearly empty! They finally found out how to keep the Stanford students out of the pediatric parking lot! (You could always tell when a new semester started.)
        Oh yes. Like Stanford itself, you now have Valet parking. Pull in (with a ticket) and they will park your car. For when the lot is full. But they were doing this when we got there as well. They get to park across the street.
        I made a mental note of this. I was used to time my entrances and exits for when I could get a space. Around noon, people leave. Around 3:30-4PM it clears up a bit. It's open 24 hours.
        I have lived my life for the last 20 months by this parking lot's heartbeat. I learned early. Of course, it has gotten worse and worse over time, which is why I now drive the van. Shaky transmission and all.
        Which I am going to have to repair any minute now. But first --- I have to do my taxes. Which I have, notice this, avoided for three weeks! Anything but! And they are not all that hard! Actually, to be fair to myself, I have the major pieces of paper already in a folder. I am not that much of an idiot!
        Next year it will be hurry hurry rush rush since I will want every cent I am owed. This year ---- well----.
        So we take the Easter Bunny we bought for the day hospital (cutest little bright pink thing) over to the nurses there - to add to their counter next to the crazy frog we gave them. They had known about the no-yellow-stuff before we did! Everyone was excited. We will now be in the day hospital every other week for a short -12- hour - visit.
        Then we went back for a physical. This is where they check for lumps. Manual testing not totally being replaced by the blood tests. His counts are good. His hair is still thinning (Vyncristine does that). (Not sure of that spelling either.)
        The doctor, a young one, red head, recently returned form Hawaii - so my son calls her Dr. Sunkissedsince he flirts with every woman in the place - especially the redheads - proceeded with the exam. During this she has to explore certain parts of the anatomy below the belt. My son's eyes rolled back in his head and he quipped, "Gee Doc. We haven't even had dinner yet."
        The doctor skirted around the table. I fell off my chair.
        My son, suave to the end.
        We discussed my son's day.
        Wake up about 10-12. Demand food. "Woman of the house, where's my tea?"
        He likes the movie "The Quiet Man" with John Wayne.
        Then I make a food offering.
        He is usually seated at the computer by then and thus he remains except for potty breaks. He eats, drinks and stays there until I chase him to bed at shot time (GCSF) or at 1PM, or his feet hurt and he needs to lay down anyway.
        I get him out for a shower on Wednesdays (yep - once a week) and blood tests at Unilab. I may get him into the grocery store with me on Wednesday - but he usually flakes out and goes back to sit in the truck.
        We get out to go to the hospital on Thursdays.
        Time to stop that.
        Time for more exercise.
        So from now on, we will drive back down on Thursday nights to the Team in Training track. Today he hated walking so he did little but I am tuning him over to the guys - they made him climb a few stairs and next week I want him walking around the track. We will get him walking around the track 3-4 times within 6 weeks. My goal!
        I am still in bandages and my feet, recovering from surgery, are not happy in sneakers.
        Within another two weeks, I should be walking with him. And get my face out of the M&Ms and dry roasted peanuts.
        He is not allowed to strain his heart (so the gym in out).
        He is allowed to get his driver's license.
        I won't budge on that until he is up and walking and can climb up and down a curb without clutching mother. Not that I mind.
        Another reason why I need to fix the van transmission. And the airconditioner. Last two scheduled repairs.
        Of course, if he gets a license, my car insurance rates go way, way up! So we may pause in this pursuit until I see what I am going to be doing. We had planned for him to be at a different address in the van. Not at this address with the new truck. Ick.
        He has also been cleared to go back to school and take a few classes. Get out of the "treatment mentality" he's been in - life scheduled around his chemo.
        I need to break that too.
        I have to file unemployment, such as it is, tomorrow (Friday). When I find where an office is located. They cap at $330, which in Silicon Valley, CA is about the grocery bill.
        That fiasco is a whole 'nother story.
        But this time, I will make sure that they pay me. Seven years ago, the San Diego office skipped 6 checks out of 7. Hard to bing them from 500 miles North. Not this time.