January 18 2018

What do I do now?

Tough decisions always come with a lot of emotional baggage, so let me be real with you. I am scared. Literally petrified that no matter which choice I choose, it will be the wrong one. 
At my most recent infusion, the nurses drew blood for a drug-level check and scheduled me for a follow-up appointment in two weeks. I left with the knowledge that I would likely be getting my infusions upped from every eight weeks to every six, pending insurance approval. 
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I spent the majority of the time prior to my follow-up pissed off that I had to return–again. It felt like a complete waste of time. No one has been hearing me, they don’t want to listen when I tell them about the blood, the pain, or the headaches and they don’t want to talk layman’s terms with me or give me the full picture. So why the need for a follow-up? As in, why now? Why not a year ago when I came to them with a butt that looked like scar face, or six months ago when I was STILL complaining of fatigue, bleeding, headaches, a leaking bellybutton, and insomnia? 
I predicted one of two things would happen: I would show up to learn that insurance, in a random act of benevolence, had approved the request for a dosing switch; or I would show up and leave just as frustrated and defeated as when I arrived. 
I never prepared for the third scenario. The one where the nurse decides to shut the door on Remicade. I started this medicine in June of 2014, one thousand three hundred and thirteen days ago. I want more time with it; I want more days. 
Why? Well, three and a half years ago I sat in a room with a nurse who advised me of the perils that go along with biologics. If you start a drug and it doesn’t work, you could effectively be cutting years off your life… or so it was presented. It seemed like a last resort, not a spur-of-the-moment whim. With less than a handful of FDA-approved drugs on the market, starting a biologic at 24 wasn’t what I had planned. But, as I said, I was never really given a choice; I picked my pregnancy and never looked back. 
I have never regretted the choice I made; in fact, I would do it over and over again. What I do regret is not reading the material and learning the full scope of the medicine. At that point, I was so focused on getting better and going into remission to protect my child, that I never saw a reason to get informed. 
Now that I am faced with the daunting realization that I am days away from getting a new med, I wish I had more scientific answers. The only ones I have are emotions and answers of the heart. 
I am afraid to risk the decent days I have now for the potential to have more. I’m 27 with two little kids; I am not ready to give up on this drug. I want to run the clock; I can take the 3 or 4 weeks of feeling like crap if that means I can stay on the meds. I want more than anything to see my kids grow up. Maybe that doesn’t make any sense, and maybe the new meds really will give me eight better weeks…but if it were your choice, your kid, would you risk it? Would you risk the manageable for an uncertainty? 
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All that being said, the nurse told me that meds have come a long way in the three or four years since that appointment. She agreed that yes, they told patients the same thing I was told, and yes that might have been true then. She said, “Things are different now, we have new meds now.” She proceeded to list a few and there was only one or two that I had never heard of. That would have calmed me down, had she not followed it up with the statement that she wanted to give me 12 weeks on the new medicine before she pulled it. 
12 weeks?! That hardly seems like enough time! That isn’t even two infusion cycles. How did she go from telling me not to cry, that there are more drugs available, to then talking about killing a second medicine – all in the same breath? 
I don’t know what to do. I don’t want to quit this medicine if there is a potential that my low drug level has to do with something else, especially when I don’t have any antibodies. I also don’t want to keep beating a dead horse. 
People tell me to do the research, but how? I’m not a doctor, I cannot read half the reports and studies, and the only thing everyone agrees on is that they have no idea how or why this disease affects people differently. 
What do I do? 
 
 

January 2 2018

What do a failed MRI, a wrongly ordered CT, and a completed CT scan have in common? Part Two!

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.
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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.
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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.
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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.
Well…bawls!
 

December 22 2017

Are you prepared for your biological drug to stop working?

When I started Remicade 3.5 years ago, I steeled myself for the possibility that any infusion might be the last. Easy enough in theory; you tell yourself it won’t matter, you have options, that every day on the meds is a unique and blessed opportunity.
What you don’t do, is actually prepare for the day the meds no longer are an option.
Although to be fair, I don’t truly know that Remicade isn’t an option; I don’t actually know much of anything right now.
I walked into my appointment on Friday and before I could even sit down, the nurses had me cornered, telling me no infusion would happen because I had an infection. They asked to see my belly button and explained that my PAC would be in soon to do an exam.
My GI arrived, too. They asked me all sorts of questions: did I have a fever? Chills? What kind of stuff was draining from my belly button and how much?
I can be honest and say…I wasn’t really sure what all I was being asked. I sort of became something outside myself.
The concern: to infuse or not to infuse.
If I do, in fact, have an “infection,” an intracutaneous-something, a pocket or an abscess, the meds could make it worse. If I don’t, well then I’m just playing a game of Risk with my antibodies and myself.
Both the PAC and the GI were insistent on my having an MRI. They actually ordered it STAT. I thought that was only something they glamorized in the movies, and on tv. They wanted me to have a specialized type, MR Enterography. It is a type of imaging used with contrast to get visuals of the small intestine.
The potential pocket is somewhere between the skin and my small bowel.
The Infusion team tried to move heaven and earth to get me seen on Friday. Insurance told them they would call me with an update; however, they didn’t give a timeframe. I live an hour+ away from the clinic and have no cell service at home. Essentially, I couldn’t go home and run the risk of not getting the call. Not to mention, if they were to schedule me, I wouldn’t be able to get there in a timely manner.
Red faced and overwhelmed, I walked myself to the end of the third-floor hallway and sat at the bay window, to wait. To wait, and cry.
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I had to try and pull myself together.
One of the nurses found me and asked if I was okay. I tried to explain my predicament without sounding like a miserable burden. A few minutes later, another nurse and my PAC came out to get me. They told me to relax at my infusion chair; It was an incredible display of compassion that gave me a small semblance of dignity.
I had no idea that I would be waiting 7.5 hours.
At no fault to my team, the insurance company wouldn’t play ball. The best they could do was Monday.
This whole “ordeal,” might be a new beginning, but it’s the end too; one I’m not ready for.
I am supposed to be hydrating, but each sip of water burns with what-if’s. I don’t know how to turn my brain off and not stress about the unknown.
I keep going over every worst-case scenario. What if I need surgery? What if I have to spend Christmas in the hospital? What if the infection is really bad, and I knew all along? What if I have to stop taking Remicade? What if…what if…what if.
My sense of validation is being over shadowed by my tangible fear of what might be.
In addition, I didn’t get my infusion. I am tired, rundown, existing (it feels) to serve the never-ending headache. I look at my kids and I cry.
I know that it doesn’t matter what the results say, it’s what I do with them that matters.