It’s “Cheese Day”

I’m not well. It’s a long story – and of course I’m going to tell you all about it – but it ain’t pretty. So, in lieu of cheese day, I’m going to talk about my physical woes. First, though, I’m going to update you on the Amazing Bean. That way you can get an update on him and then decide if you want to come with me on my “journey”.

Okay, here’s the scoop. Ben just finished day seven of radiation therapy and has seven more days to go. He’s half-way there! So far, he’s taking it like a champ. I’m finally getting a bit more comfortable with the procedure and I actually watched him on the monitor this past Friday. He lays perfectly still and does as he’s told. He’s such a good boy. Seeing how he handles it so beautifully certainly helps calm my nerves of him being in that room completely alone as he gets zapped with radiation.

Ben will finish these treatments next Friday, January 30. We finally got information from Sloan Kettering on when we’re going and what we’ll be doing for his preliminary testing. We’ll fly to NYC February 2, get set up in the Ronald McDonald House and then start our onslaught of meetings with Ben’s treatment team. We’ll meet with the finance people, the doctors, and hopefully crash Al Roker’s set. (Just kidding. I have no interest in the Today Show.)

Then, Ben will do scans that will hopefully show him to have NO EVIDENCE OF DISEASE, get bone marrow biopsies done, and all that non-fun (but necessary) testing hooey. He will have to be sedated for his bone marrow biopsy, so we’ll stay overnight to let him rest. I’d really rather not make him do anything under sedation (remind me to tell you about the “Hope on Wheels” event sometime… probably our most comical post-sedation story to date). So, we’re planning to leave NYC on Sunday so we can have Saturday to do some touristy things. If you have a favorite thing to do in NYC (legal AND kid friendly, that is) please let me know. I’m taking a poll.

I’m sure we’ll learn when Ben will start his actual antibody therapy during this initial testing phase.  He will be receiving actual MOUSE antibodies – not humanized like they were during his ch 14.18 therapy at Nationwide Children’s in Columbus. It will be painful. He will be on morphine or some other painkiller during infusions. Hopefully he won’t have any allergic reactions to the antibody… hives, rashes, etc. I continue to hold on to the premise that he’s been through enough already, he doesn’t need more.

Okay. So, this past Friday I had trouble going, ahem, number 2. I’m usually a very regular person so this is not a normal experience for me. I haven’t been taking the best care of myself (I’ll forget to eat or take my meds, stuff like that) and I imagine the high level of stress and lack of  daily upkeep has begun to take its toll. I mean, I’m showering and stuff – my hygiene is a-okay – I’m just forgetting to do the other things I normally do. So, Friday I’m miserable. Saturday, I’m even more miserable. Nothing’s moving and I start having immense pain and copious amounts of blood. We drop the kids at our friend’s house and off to the ER we go. (Of course it had to be the ER, because we just needed to pay that excessive co-pay).

So, they take me back right away. They hook me up to some fentanyl, which I DID NOT like. In fact, that’s what I kept saying, “I don’t like this! I don’t like this!” The nurse said, “Oh, honey, this is what we call ‘being “HIGH”‘. My response was “This is in no way, shape or form, anything like being ‘HIGH'” (not that I know anything about how being ‘high’ truly feels – although I am a graduate of Ohio University – I think I took a class on the effects of marijuana). Anyway, I’m sure they made note of my statement in my chart. It might read something like this: “Patient states that fentanyl is not her usual drug of choice…”

Not my drug of choice...

The doctor took me off the fentanyl, gave me a most unpleasant exam, and immediately said that I had thrombosed hemorrhoids that would require surgery. Surgery? Really? Go figure. Now, it is not uncommon for older people, especially women who have experienced childbirth, to accumulate a hemorrhoid or two. In fact, I had a procedure called IRC a few years ago (administered by someone I went to HIGH SCHOOL with – of course a humiliating situation had to be made worse by having my bottom intimately viewed and treated by one of the smarter people that graduated from Watkins Memorial). But my current situation was way out of the realm of your basic hemorrhoid. Of COURSE I would get an acute case, because I tend to go ALL OUT. After all, if I’m going to do anything, I usually go full-throttle. Whatever.

So, me and my butt went home to rest. The doctor did give me some percocet (since I am allergic to the wonderful vicodin). I spent the rest of Saturday and all of Sunday dazed and confused. Monday was a holiday so I rested most of that day, as well. So between the grogginess of pain killers (much needed) and some stuff called “proctofoam”, you can guess how exciting my three-day weekend was.

Tuesday I went to a specialist (how does one ever arrive at such a specialty?) He was a very kind man. Terrific bedside manner AND I had NEVER met him before! He told me that he was, unfortunately, going to have to give me an exam. I told him that I expected as much given the circumstances. But first, he asked me about my family health history. This depressed me even more. My son has cancer. I had cancer. My mother has a defibrillator/pacemaker thingy AND has had a stroke. My father’s health is unknown but I’m sure his former two-pack-a-day habit hasn’t served him well. My half-brother is HIV positive. My half-sister, thus far, has escaped any major medical trauma but is contemplating plastic surgery. I would, too, if I had her money. Call me jealous. Then, after relaying all of this depressing health history, I had to drop trou.

Immense pressure followed by severe pain and a few “hmmm’s” from the doctor ended with the announcement that I had been misdiagnosed at the ER! Hooray! No surgery! But I did have a pretty severe tear (honestly) and with a treatment plan that will add copious amounts of time to my daily “beauty regimen” puts me back in a position of having to care for myself in a more consistent manner. I have pills and fiber and milk-of-magnesia and packets of colace and creams to apply. It’s like a spa day for my bottom. At least that’s what I’m telling myself. I’ll have the most pampered butt in town.

I do have to say, though, I was prescribed nitro glycerin for daily application. There is only one place in town that mixes this tricky concoction, and that place is called “Todd’s Pharmacy”. I have to admit, when the doc told me I could only get this from “Todd”, I was thinking we were headed off to a shady part of town to look for an old VW Vanagon sitting in the middle of a parking lot with “Todd’s Pharmacy” airbrushed on the side. This was not the case. “Todd’s” is an honest-to-goodness old time pharmacy. I was relieved. Because if there were any gunshots at this Todd’s place, I was in no position to run anywhere. It would have been more like a clenched-bottom hobble. Small miracles. I’ll take ’em.

Long story short, I’m going to live. I’ll go back in three weeks to see if it’s healed. Thanks for listening and I hope it wasn’t too terribly offensive. I’m just at the point where I have to laugh at this stuff.

Oh yeah, and the transmission went out on the van. Emergency room co-pay, travel expenditures for Ben’s treatment AND $1,800 in van repairs all in one weekend! Good times.

Percocet, please.

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1 Comment

  1. Sarah,
    You may not remember me but I was in your Bible Study Fellowship discussion group back when you lived in Ohio. I was always very moved as you shared all that your family endured after Ben’s intial diagnosis. Since that time, I have periodically checked Ben’s website to see how he was doing. When I checked it in September I was very shocked and saddened to see that he had relapsed. I just want to let you know that I keep Ben and your family in my prayers. I pray for his healing, for God’s peace and protection of all four of you, and that God would boldly make His presence evident to you during this nightmare. Just wanted to let you know that someone else in Ohio was thinking of your family!

    [WORDPRESS HASHCASH] The poster sent us ‘0 which is not a hashcash value.


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