Phew. I’m here. That sounds a lot less impressive than it actually is. But, I’m here and I’m feeling…good…
I haven’t uttered those words…”I feel good…” in a very long time. But I’m happily saying it now. My good and you’re good may be vastly different but that really doesn’t matter. Because at the end of the day, as adults we are the only ones that are responsible for ourselves in such a way.
But let me go back. First of all, I can’t imagine what my dad has been through in the last several months. I cannot imagine watching my own child deteriorate for no apparent reason. It must have been so agonizing. Don’t get me wrong, it was my physical pain and agony but there is nothing worse in the world than to watch your own child suffer.
And I was sick. Boy, was I sick. It was frustrating and it didn’t make any sense. No matter what we tried, I wasn’t getting better. In fact, I was getting notably sick. I kept thinking back to the six years of remission I had and wondered where they had gone. Ever since coming out of remission, it had been a struggle to stay out of the “red,” so to speak. I was always hanging halfway off the edge, trying not to fall into the next worse thing. And eventually, I would fall. Again and again I fell.
There were hospital stays, blood transfusions, iron transfusions, medications, treatments…everything…you name it.
Eventually, my hair even fell out.
When your health fails and you can’t fix it, there is this inevitable feeling of betrayal. Your own body is betraying you, abandoning you in your most desperate time of need. One day you look in the mirror and all you see is the shell of someone you once knew. Sounds dramatic, I know. But its true. In my case, I didn’t even recognize the person staring back from me in the mirror. Between the hair loss and the prednisone face, I felt like I was looking at someone else entirely.
And then one day something happening. One simple event kickstarted a domino-effect series of events that really changed everything, at least to this point. It was infusion day. Every eight weeks I go to the infusion suite and get my treatment. Like most infusions, it didn’t start out at every eight weeks. It was every week, then two weeks, then six weeks and so on. So, by this point, I’ve spent a lot of time with the nurses in the infusion suite. I love them. They are AWESOME. They remember their patients and get to know their patients.
That’s why when I stepped off that elevator on that Friday morning, I caught her eye. She looked at me and said “you need blood and you need it now.” She said I was paper white, lips and all. I just kind of shrugged about it but I did as she asked and I contacted both of my doctors. My primary doctor called in a lab order for me to get a CBC. She said if the labs came back low, she’d order the blood. My GI doctor told me to go into the ER and have them check it on the spot. He said they would give it STAT if necessary.
I will be honest, I didn’t want to go to the ER. Every time I go in there, I end up hospitalized for a week or more. I don’t have time for that. I have some major projects in process right now and although I do still work from the hospital, my productivity is always totally shot in there.
So, I went home and waited for the lab slip to get called in.
The next morning my dad urged me to head over to the lab to get the ball rolling. He even offered to drive me. So, I did. And we were just a little too late. I had no idea that the lab closed early on Saturdays. Naturally, I think “oh darn, I guess I have to wait til Monday to get stuck.” But my dad looked at me and he really saw me. Normally I spend time in a less-than-well lit room. But here I was in the full sun and even he could see how badly I needed the blood. So he urged me to go into the ER.
So I did.
And they kept me. They gave me two units of blood and then transferred me up to Leigh. Just what I was avoiding was all happening right before my eyes. I tried pleading and promising with no luck. I promised that if they sent me home, I’d follow up with my doctor first thing Monday morning. Not happening. After a few hours my Stryker-brand chariot had shown up to carry me away. And off I went to Leigh.
Once things were settled and nighttime turned to day, I got the visit I had hoped for – my doctor’s NP was doing her rounds. I just love her. She tells you how it is and doesn’t leave you wondering what is happening. This visit was very significant though. She asked about my pain and my pain management. I told her that I was experiencing a lot of lower belly pain every day/night. To combat it, I was chewing up a few Gas X tablets and taking at least 4 ibuprofen.
She almost dropped her clipboard.
She told me that I cannot take ibuprofen and that given my condition, my changes of bleeding internally were way too high. I had it exactly backwards. I thought I could have ibuprofen but not Tylenol because of liver toxicity. And not only was I taking the ibuprofen. I was taking a minimum of 800mg each evening, plus any other time I may have had a headache or any other pain.
This had been going on for as far back as I could think. And suddenly it all made sense. There was no longer a question of why I wasn’t getting better.
So, once again the amazing nurses and doctors at Leigh got me back under control and sent me home. This time my homecoming was different. I had not been in nearly as long as the last few times, so I didn’t have to deal with atrophied muscles and side effects of a seemingly never ending array of IV cocktails). This time it just blood transfusions, saline solution, solumedrol (of course), dilaudid, and then my regular meds. There was no excessive amounts of antibiotics that leave me feeling soggy.
It didn’t take a long time to start feeling better – certainly not as long as one might assume, given the level of sickness I was at and the amount of time I had been that sick.
Here I am tonight, updating from the oceanfront in Kill Devil Hills. I’ve missed so many adventures lately but this time I don’t have to. Our plan was to spend Sunday on the beach with my best friend Amy, and her family. But I decided that it was time to take a little mini-vacation. So after work on Friday, we packed our bags and headed to the Outer Banks. But that is all worthy of a different post.