The roads were still an absolute mess getting home but we weren’t stuck for too long. Rather, not long enough that we turned around again but definitely long enough that I had never been so happy to be home!
It couldn’t have been more than ten minutes after we walked in the door that the phone rang. It was one of my Infusion nurses letting me know that they had an available CT slot for me. In three hours. In another city.
With traffic being redirected into my little corner of the world, I had to leave over an hour and a half prior to ensure I would get there on time. I really didn’t want to risk missing the appointment, even if my stomach hadn’t quite gotten over the previous day’s testing.
This time I went alone. Probably because I was too sensitive but definitely because I needed the space to fall apart. When you grow up dealing with this stuff alone you learn to stay that way. I never fully let anyone in or tell them my fears, not the real ones. Not the dark and potential reality fears. No sense in making others feel like they are also flapping in the twisted nether.
The tech (whom I later learned was in training) came out with three giant cups of water. I asked why I wasn’t doing iodine and she said that the particular test ordered could be done with either water or iodine. I was skeptical but I wasn’t going to question her.
Remember what I am always saying? Be an advocate!
I should have pushed the issue a little harder.
I wasn’t layered up much and between the AC vent above me and the ice-cold water I was pounding, I was shivering. Even the anger simmering beneath my skin couldn’t warm me.
When it was finally my time to head back (they usually give 45-60 minutes to drink the prep), I was escorted to a curtained area and told to put on the gown. I was more than ready to have this be done.
I should know by now that nothing ever is that simple.
I was lead back into the radiation room and was about to lay on the exam table when the radiologist came in and put a kibosh to the test.
As he tells it, there is light contrast (iodine or water) and dark contrast (barium, etc.). My doctor ordered light contrast but indicated that he was concerned I had an intracutaneous fistula OR an abscess. Apparently, light can tell the radiologist if there is an abscess, but only dark can see both a fistula and an abscess.
I didn’t exactly take the news well for several reasons. One, I was standing in a room full of radiation in a freaking half-open gown crying in front of two men–two strangers–two people who did little to earn the tears. Two, I had been sitting in that drafty tomb (that’s superfluous drama) of a waiting room sipping water in fear while they…what? Didn’t read my chart? Also, three might make me sound spoiled, but who does the radiologist think he is to overwrite my doctor’s orders?
Obviously, I wouldn’t want to have to do another CT even if my insurance would approve it, which it sounded like the radiologist was trying to avoid. He was willing to do the injection/scan but he said if it didn’t uncover an abscess, I would be no closer to figuring out what was wrong with me.
Given the hour I was not able to complete the test that night. Instead, I was sent home with two bottles of barium and instructions on how to prep and when to arrive.
Barium is probably one of the worst things I have ever tasted. It’s slimy and viscous. In my experience, it is always better to go with unflavored prep, but I was only given the choice between vanilla, chocolate and banana. I absolutely hate banana, and I love chocolate, so I went with the one I would be able to stomach and not cry about not wanting to eat in the foreseeable future.
(During one of my hospital visits years ago I needed to down an ounce of some salt solution. The nurse on duty, for whatever reason, decided to drop the one-ounce salt shot into an ENTIRE 12-ounce can of Sierra Mist. WHY? I have always wondered why she didn’t let me chase it. Regardless, I was unable to drink Sierra Mist for years. It tasted like falling asleep in the ocean with Froot Loops in my mouth. True story.)
Barium is a liquid best served cold. On this particular day though, I had an hour commute to the clinic and I couldn’t sit and down the prep quickly before leaving. No, instead I had to drink the prep while driving. It was kind of awful. The first bottle went down relatively quickly and decently smooth, though the second bottle was psyching me out and getting warmer by the minute.
I was able to drink both bottles with only a few questionable burps. I was actually rather proud of myself… until I got to the clinic and was asked to drink another half bottle.
After dressing down and going into the radiation room I was asked to get on the table and raised up for the scan. Despite my abject terror of needles, I let the tech-in-training practice my IV.
I don’t know about most patients, but I am never one to turn away a student.
After the first two missed attempts, I gently advised both techs that I have a hidden yet magical IV spot on my hand. I told them they wouldn’t be able to feel it and 90% of the time they can’t see it either, but if they follow the dot (a permanent marking from 3+ years of IV infusions) they’ll hit the vein every time.
In typical fashion, they seemed hesitant to trust me or the spot. Three other failed attempts and visible sweat on the male tech’s forehead later, he was ready to try the hand. It worked like a charm. It always does.
After I was done, I asked if I could buy the two techs coffee. It had been a horrible few days, but they were the only two that actually saw me for what I was: a scared human. Of course, they declined.
As I was getting re-dressed, the male tech called through the curtain asking me to stick around after I got dressed. I dressed slowly and with uneven breathing. I kept wondering…did they find something? I have had fast calls before, but never this fast.
When I pulled the curtain open the tech came to me with a coffee card in hand. “We don’t deserve coffee, but you do,” he said. I can assure you, I was not expecting that.
Knowing I had nothing to do now but wait, I decided to treat myself to lunch after the pharmacy. When I texted my sister of my plans, she decided to drive the hour or so up to come sit with me. It was a very generous offer. One for which I was more than excited.
While sitting at the restaurant waiting for my sister, my PAC called. Final culture swabs came in, in addition to the strep and the staph, I also tested positive for antibiotic-resistant Influenza. Awesome, right?
PAC called CDC and with their recommendation, suggested I take cephalexin for ten days. One 500mg tablet twice a day for ten days.
While on the phone my PAC also asked if I had been having any pelvic issues. I kept the snarky response in my head at bay and just replied yes, reoccurring “Bartholin cysts.” (The snarky response had to do with my coming to her months ago for a quick exam, to which she brushed it off and recommended anti-fungal medicine.)
She went on to mention that although the MRI wasn’t completed and had no contrast pictures, it was not a waste. From the report she was able to glean results that indicated perianal disease. Huh, imagine…after a year of me complaining, they ACTUALLY found something.
Hard to diagnose though it may be, I felt more anger than validation.
The plan was to pick up the prescription and wait for the CT results. MRI showed something that potentially could require attention but without the contrast they wanted corroboration from the CT results.
Corroboration they did not get. CT did not have the same results. In fact, it showed differentiating information. My team has decided to go with the CT results. I don’t agree with this plan but without a medical degree my opinion has mattered nil.
According to them I was fine to resume IV Remicade. I needed to wait 72 hours for the antibiotics to start working but I wouldn’t be hospitalized for Christmas; the only true win I have felt.
At my infusion appointment I told them about the bleeding. The excessive bleeding. Would it shock you to know, I was dismissed? I was told that could happen. Of course, it can. I have lived with this disease long enough to know that, I was merely making mention that the blood was worse. Extremely worse.
Instead of being on the napkin or mixed, the blood looked like someone poured juice into the toilet bowl. I was feeling weak, more exhausted, and as a bonus, I am iron anemic.
I was sent home with an appointment two weeks out.
They drew blood for drug levels and now they are thinking I need MORE of the Remicade. We just doubled in May, and a week ago they were afraid the drug wasn’t helping…now they think I just need more of it.
Personally, I think they are taking the easy way out. I think they know I am un-winnable case.
Did I mention the disease progression? CT indicated obvious and apparent disease progression since the last CT scan a year ago.