Paperboi

Income sources for kids growing up in the suburbs of Connecticut in the 80s were limited to the usual suspects: Mowing lawns, shoveling snow, babysitting kids, and delivering papers. As the oldest of 5, I had no appetite for childcare. My wife can attest to my distaste for lawn maintenance. Snow removal is cold wet unpleasant seasonal work. I fell into paper delivery.

The deliveries were easy enough. Sometimes multiple trips were needed - Especially with the New Haven Register Sunday edition. They'd drop off the comics and coupons on Saturday, allowing you to either a) deliver them early, or b) collate them into a single Sunday edition the next morning. A standard spring-arm bike rack might carry 3 to 4 Sunday editions at most - A 25 house route meant multiple trips. I recall begging my father to do the route from the car. His response usually matched what mine would be if my kids asked me to drive them around on Halloween night.

Delivery was a manageable chore. What I really dreaded was what we all called 'collecting'. Every week, you were supposed to go out to each customer with your little book of tickets and tell them how many weeks they owed you for. Knocking on doors, listening to dogs bark, asking folks for money. All scenes from an introvert's nightmare.

The chance that I might get a tip was not close to enough motivation for me. Invariably, I'd procrastinate a week or two or four, until the amounts owed blossomed from a couple of bucks into a full grown fiver. Some part of me knew this was self sabotage - The messenger’s task never gets easier with time.

Don't jump ahead to conclusions, reader - There is no terrible news to share regarding my prognosis. The treatments for my cancer are still on-track. My doctors are optimistic that my cancer is responding to treatment, and that I have good chance at a post-cancer existence. The mental and physical outlines of the shape of that existence are unknown and frightening. I'll cross those bridges as they come.

The conditions of my daily existence right now are difficult, and have been for some time. Most of what I'm dealing with are still side effects from radiation - a condition called acute radiation proctitis. This means that the last 5 inches or so of the rectum are inflamed due to damage from the radiation aimed at the tumor. I've also had to deal with a thrombosed hemorrhoid, which is incredibly painful.

The symptoms of the inflammation manifest themselves in several different ways. Straight up pain is one. Pain during defecation is another, due to the narrowed passage. There are multiple daily spasms that start in the rectum and cause my entire abdomen to clench tight. Above all of this is the numb sensation that I no longer have complete control or sense of what's happening down there. Farts come out of nowhere, complete with mucus from my healing rectum. Full bowel movements commence moments after abandoning a fruitless 10 minute bathroom visit.

There is also the uncertainty of how much of the damage is permanent. My initial complaints in late December were met with assertions that symptoms usually pass within a week or two. We're months past that optimism. Dr. Google says that acute radiation proctitis can last up to 6 months, but that just seems to be the point at which the diagnosis changes from 'acute' to 'chronic'. My life for the last 2 months has been an effective brochure for the advantages offered by a permanent colostomy.

I'm not in constant pain, but my pain hits a level 3-4 out of 10 for several hours almost every day. Some hours pass during which I can eat and sit comfortably, even take a walk. Other times I'm in a condition where it hurts just to stand, and sitting is torture. The pain schedule isn't published or predictable. Most of my comfortable sitting time is dedicated to getting some work done, which is a welcome escape.

Prior to my diagnosis (and for a few weeks after), I was playing soccer and basketball three to four times a week. My skills were almost exclusively in the areas of speed and hustle. One would never guess that from the speed of my gait now.

Depends are my underwear, and have been since December. Three months ago, I had no standard for what constitutes a 'clean enough' pair of Depends. I've developed one in the interim, and it is low enough to discourage description here. Over the past few months, I've come up with some interesting origami-style toilet paper lining strategies to allow a pair to last 24 hours. Most bathroom trips are post-flatulence, to change out the mucous stained toilet tissue. I set an arbitrary guideline back in January - Pass 48 consecutive hours without crapping yourself before dining outside the home. Haven't come close yet.

Folks ask a lot about my appetite, how I'm dealing with chemo, etc. Chemo is not fun, and chemo days are worse to be sure. My hands and feet are starting to feel the impact of neuropathy, a known universal symptom of oxaliplatin infusion. Nausea on the days after chemo is an issue. There's also the matter of my emergency hospitalization after my 2nd chemo treatment - Another check in the minus column.

However, the chemo side effects have largely been manageable. There are plenty of side effects for my course of treatment that I've been lucky enough to miss out on. Mouth sores, chemo brain fog, taste bud changes, lack of appetite - These haven't been an issue. I'm more than 1/2 way thru my chemo treatments, so hopefully my luck holds.

My emotional state is volatile - Maybe fragile is more accurate. I've cried more in the past 2 months than in the last 10 years. I play guitar almost every day, but I'm stuck on 3 or 4 songs. Most of the songs I sing or play regularly carry enough emotional weight to cause my voice to break and tears to form. It is a therapeutic exercise, and I'm grateful for the release. Still need to find a few more songs tho.

My family relationships are good. Karen has been a rock of support, and the kids have been kind and helpful. Their accounts may differ, but I'd say I've mostly been able to keep my pain from ruining my temper. They were able to get away and go skiing last weekend in Colorado. Normally I skip skiing trips anyway, so I didn't miss out. Mostly I was happy to have the weekend to recuperate from chemo in private. I don't like to do much suffering in public. Also, really happy they were able to get away and have fun - I don't need them sitting shiva for the next 6 months.

That leads us to this update. Folks are concerned because I've been lax about updating this site with the latest news. I've been slow to update because there hasn't been much that's funny or fun to talk about, and I don't really want to bitch and moan. I'd rather suffer privately, or at least quietly. The longer this stage progresses, the easier it is to delay collecting for another week.

Yes, I'm halfway thru chemo, and that's a positive. Visitors (depending on what the pain is like when they see me) can get the impression my condition is improving. That's not inaccurate, although the improvement is more gradual than I'd like.

My reality, however, is that the chemo is only the first step in a treatment plan that will take many more months. I've got 4 more chemo treatments, which will take me into late April. Then a short span of healing, followed by scans to evaluate how well the cancer responded to chemo and radiation. Following that, a surgery that leaves me with a temporary ostomy and all the attendant diet and personal care adjustments. Provided all of that goes well, then a three month wait until an additional surgery to re-attach my colon to my rectum, and months of adjustment to whatever new normal awaits.

That's a lot to take in, and a lot to type out - Even when glossing over the details (and yes, I left stuff out). Compared to the cancer support groups I'm a part of, I've got plenty to be optimistic about. I'm grateful for that, to be sure. There's still a lot of hard road ahead.

Last, thanks everyone for the help and support they've offered/given/etc. There are plenty of folks who have asked what they can do, and often the true answer I have is 'nothing'. Every time there has been something, folks have stepped up. There's also my heartfelt-conversation-daily-limit to contend with. I'll keep trying to spread tasks around so everyone gets a chance to help (and so I get to connect with everyone).

Much love -

~Ed