Fits, Starts and the Blues

I'm thinking I'm an unlucky person in some ways. Radiation is supposed to involve treatments five days a week at the same time every day for the duration of your plan. The latter is to reduce the inconvenience to the patient and increase the convenience to the technicians. In Diane's World, there would be 1) a daily radiation time that doesn't fracture my day or make me get up too early or be out later than I'd like, 2) treatments that run relatively on-time, and 3) uninterrupted treatment for the next 6 1/2 weeks, excluding weekends. Oh, and there'd also be world peace and prosperity and lots of no-calorie, no-fat but-still-delicious chocolate.

Friday, July 13th. A nurse calls to schedule my treatment time. She is very sorry but the only slot left is 7 o'clock at night. Brilliant logic tells me I utterly and completely lost the choose-your-slot sweepstakes. One slot left? I'm the last person you called? What did I do to bring this on? Do I smell? Was I cranky? Was I too nice? 7 PM? for 7 weeks? But...that's only two hours from my bedtime these days. I'll be sleep-driving on the way home. I am only dismayed and not cranky, I swear. The nurse is sympathetic, so after some hemming and hawing, she says: How about noon? I am mildly trepidacious since I'm pretty sure that the office usually closes at noon. But she would know that, right? Resigned to fate, adjusting lunch plans (or going without) for roughly two-months, and having my day broken right in half for the same amount of time, I agree. Because the only slot on the following Monday is at night, she suggests I start on Tuesday instead. This is the first clue that the universe is totally unaware of Diane's World (see #1 above).

Tuesday, July 17th. Mike has already posted about my first radiation treatment, which involved a hospital-wide power outage that caused a two-hour delay. This outage occurred the minute my parents and I stepped out of the elevator into the reception area. What little gremlin was sitting on my shoulder, I ask you, that killed the lights and everything else just exactly in time for my treatment? This, however, meant that the other people in the waiting room would not be subject to the tummy-grumbles of the Hammond/Ohala clan. As a special treat for the first day of radiation, we get to have lunch in the hospital cafeteria. There went my plan for a speedy treatment and a take-out lunch from Beyond Bread on the way home (a place my dad especially likes). The universe sneezes again at Diane's World (see #2 above).

Wednesday, July 18th. The waiting room and reception desk is deserted today, evidence that patients are not usually scheduled at noon. This is a tad disconcerting because on Wednesdays, in addition to getting treatment, I am supposed to see the doctor so he can take a look at the tata and answer any questions I may have. I have the sneaking suspicion that my Wednesday trips for radiation will also involve waiting for the doctor to get back from lunch.

Surprisingly, I get zapped relatively on-time. I try to envision the radiation beam sizzling dormant and potential cancer cells: snap, crackle, pop! When I am taken back to see the doctor his nurse tells me there is a weekly reading group from noon-to-one on Wednesdays, so it is not clear how long I will have to wait to see him. Sighing, I pick up my book and prepare to wait in my drafty hospital gown in a freezing cold room. After ten minutes or so someone comes, but it is a resident, not my doctor. The resident is very nice and answers all my questions, except whether I will ever actually see my doctor during treatment given his attendance at the reading group.

Monday, July 23rd. A technician calls me at the crack of dawn to tell me that the machine is broken and I should not come at my usual time, which was actually bumped to 11:20 instead of noon. They have a repairman working on it and I should call later that morning to see if and when I should come in later in the day. Um, okay. Do multi-million dollar machines have repairmen like a Xerox? Shouldn't there be a team of specialized emergency technicians for such an important machine? A lone repairman of uncertain (to me) provenance seems a little like sending a plumber to fix a leak in a dam. All right. At least they called me first. And a one-day reprieve isn't unwelcome since my parents are visiting and my tata is already showing signs of a burn.

I call back as requested and am told not to come in that day and possibly not the following day either. The best the repairman can tell: a part is needed that is not readily available and it will take the rest of the day to locate one. Um, what? Why are parts for such a critical machine not on hand? This is a machine that services upwards of 60 people a day - and these 60+ people do not just have a cold but have cancer. Hello? Why are there no contingency plans? I know there are two other machines so why not switch people to those machines? I know this would involve some work because apparently each machine is slightly different; a patient's plan would have to be reworked for a new machine. Still, I wonder why they don't plan patients on two machines from the get-go in case of just such a power-down, but I say none of this to the technician because the broken machine is not her fault. She and her fellow technicians are some of the nicest, most empathetic people you could ever hope to meet. I am slightly worried, though, because when I started treatment the week before, the nurse told me that interruptions are not a good thing. I begin to fret that these delays will jeopardize my health, nullify the three days of treatment I already had, and add additional days to my already long radiation road trip. It's subtle, but I'm guessing we're definitely not in Diane's World (see #3 above).

Tuesday, July 24th. My parents leave in the afternoon today. We are waiting to hear whether I need to go in for treatment and are hoping that, if so, it won't interfere with taking them to the airport. I call and am told not to come in until Thursday. The part has to be ordered and it will take until then to get it, replace it, and get the machine up and running. I am still amazed at the lack of planning for this type of event. However, we take the opportunity to get the missed lunch at Beyond Bread. My parents' tummies get filled before their flight out and my dad is especially happy because he gets a sweet as well - a big piece of coffee cake, half of which he wraps carefully in napkins so he can take it on the flight. We have a brief time at home before we drop my parents off at the airport. It is really hard to see them go. I never imagined I would live away from family and as my parents get older, seeing them so little gets more difficult. I am also well-aware that this is the last visit from family during my treatment. When we get home from the airport, I spot my dad's coffee cake forgotten on the kitchen counter. It makes me cry.

Wednesday, July 25th. I get a call saying that not only does the part for the machine have to be ordered but it has to be built in England and shipped overseas! Hahahahaha! What?! Are you seriously telling me that there really is no part for this machine in existence? and that no one in the whole of North America can build it? I admit that the humor in this escaped me on this day and is only hitting me now. On this day, I am actually pretty depressed and very very tired. I am unsettled by the lack of routine in what is supposed to be a straightforward treatment. I was ready to get started and these delays worry us both and also mean that my last day will be even later than we had hoped. I try to do some work that very much needs to get done but my brain won't cooperate. I miss my parents, Mike is at work, and I am very out of sorts - feeling lonely and discouraged. Also, my sister called the night before to tell me her cat has cancer. Do I spread this stuff? Please please please keep it away from family. After my last cancer, it hit my mom, one of my sisters, and my mother-in-law. Please please don't go there again. You can ignore Diane in Diane's World but not any others.

At least now, because the machine will be down so long, they switch my plan to another machine. Since the two remaining machines are already booked during the day, the only times available to schedule patients are in the evening and in the early morning. I lose the sweepstakes again and am told to come in at 6:30 PM on Thursday. No choice this time. I am also told that I'll have to come in on the weekend to make up for the missed days. This means we cannot go to E's post-wedding reception in San Diego, as we had hoped. In truth, I was worried about my fatigue in any case, but it is a disappointment nonetheless.

Thursday, July 26th. My mood does not improve today and I'm more tired than the day before. This depresses me, too, particularly as napping is not successful and resting doesn't make me feel any better. My brain is sluggish and so is the rest of me. In an effort to snap out of it, I spend time trying to work out why I should feel so blue. Although it may not be Diane's World, it could be so much worse. I've seen that by looking around the waiting room and reading the front page of the paper. I may feel unlucky now but I'm really not. I have people who love me - a network of more people than I realized who care and who reach out, who remind me that I'm not alone in this - and good people who make it possible for me to go through treatment without the onus of work. I have a wonderful husband and son, family and in-laws. I get to enjoy summer storms and the rainbows that follow. I get to sit with my little dog in my very own home, relatively free of debt and so far protected from the violence and tragedy that is present for so many others (no jinxes please).

My epiphany is that with all these things going for me and with Mike back at work and no more family visits, I feel I should begin to put the pieces back together. So why am I such a dud? With all this time off (going on 7 months now), what have I accomplished? I should work-work-work, I should get back to exercising, I should re-decorate my house, paint my office, see a nutritionist, a therapist, take dancing and photography lessons, give Ernie a bath, publish the Great American Novel or at least some research, get back to cooking meals, doing laundry, taking care of the yard and the house, my husband, my son, and find a way to be inspirational like all those other people I keep reading about in cancer magazines. These magazines say to me: if you are lucky enough to live through cancer then you should be doing extraordinary things. I am feeling just like ordinary me. And ordinary me is tired and weepy and feeling pressured by my own thoughts. Where is my inner strength? My sense of perspective?

I spend my day with these thoughts and not surprisingly, I am exhausted by the time we have to leave for radiation. There are goodies in the waiting room in an attempt to mitigate the stress of the week's delays and uncertainties. We are momentarily appreciative until we're told that they are an hour and a quarter behind schedule. No call to warn us of this glitch. I have changed into my gown and am sitting in the patient waiting room, which is as cold as I imagine an arctic night to be. Mike paces because he is too cold to sit. I don't want to change again but I tell Mike he can go elsewhere and come back, but he doesn't. I do get a warm blanket that I share with Mike, but then we actually get to see a doctor (but not my doctor) and she at least reassures us that, although for some cancers delays like this are harmful, for my cancer, such a break in treatment is not, especially as I am coming on the weekend. Coming on the weekend will also mean that I will have only missed one treatment this week.

I finally go back to get zapped, which means undressing again in front of strangers in a cold room on a cold table with a big machine that makes unsettling noises (it's a bit like Dr. Frankenstein's lab). The technicians are solicitous and apologetic, but tell me that the only time available to come in the next day is 6:45 AM. All right. Guess I'll be back in less than twelve hours. I am beginning to think that I doth protest not enough since I appear to be the one with no choices ever.

Friday, July 27th and so on. I make the best of the morning trip by stopping in to Raging Sage and the Coffee Bus on the way home. There is no traffic to speak of at this hour and I enjoy the way the sky looks and my open sun roof as I drive. I am early enough to Raging Sage to score some scones, and although I only ask for two, I somehow get four. Some to save! At the Coffee Bus, P (the owner) asks whether I am okay - something she clearly has been wanting to ask since I first showed up bald. She is wonderfully kind and encouraging. Although I get home needing to rest, I do actually manage to nap. I still fret about my sluggish brain but at least treatment is on again. I read an article about chemo-brain while eating a scone and feel marginally better that this is now a documented fact and I don't have to continually blame myself for being unable to focus (or at least I shouldn't blame myself entirely). I score a better time for Saturday's treatment but the rest of the days are up in the air (Sunday turns out to be a reasonable time but today was 6:45 AM and there is confusion about tomorrow; clearly there is no hope for #1 above).

Still, Mike brings home many surprises from people at work in the past week: a gift-certificate for ice-cream from LB, a hand-crocheted hat from SD, a book and chocolate from LG, a big box of Middle Eastern cookies from SF, sweets from JB. I also get an unexpected and very thoughtful note from someone I didn't even know knew about my cancer, as well as a call from my hairdresser (as I have no hair, this is a call made out of concern and friendship), and a note from the hygienist at my dentist letting me know they are all thinking of me. All of these things warm my heart and help to pull me out of my funk. Did I say I was unlucky? I must have misspoken.