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Error In My Favor

Once I was back in a little private triage room, which in reality was a hallway where there was a little staff room if I remember correctly, I remember feeling really puffy. I started taking off my rings. Then my necklace. Then my bracelet. And then my wig. The gentleman who had gotten me the wheelchair was seriously the most calm person ever considering the circumstances. He got my mom a little bag to put everything in for me (Catch up with my trip to the ER starting here).

Then he ran an echocardiogram (EKG). That was normal. More good news! Then he helped me get out of the wheelchair and onto a stretcher. That is about when we realized I could not lay down without everything getting worse again. He started to take me to the “room” they had for me. Turns out, since they were so busy, it was a hallway spot. So, the second woman from the front desk had come running back to stop him from putting me there and she kicked someone out of their room and put them in that hallway spot. Then they took me to the ER room. Seriously, this ER staff was rocking it so far! The concern was that the germs would be a bigger threat in the hallway.

Once I was in a room, they did bloodwork, and it seemed like about a million people were in there with me. Apparently, not too many people present with my symptoms and, well, turning purple. That Guy still was on his way to the hospital, just to give you an idea of how fast they were moving. When he arrived, the gentleman who had done the initial testing escorted him back. He warned That Guy that I was very purple and that it was alarming. At some point, they helped me put on a hospital gown. When I took off my clothes, they saw that I had turned purple from the chest up. From what they were describing to me, they said it stopped on my front and back torso at the band of my bra. When trying to examine me and do various things, they kept laying me down and it just wasn’t a good thing for me. Somehow someone decided they would be doing a CT scan or three about the same time. I was getting pretty scared and I just remember one of the doctors rubbing my arm as another rattled off some possibilities. It was very overwhelming.

In the midst of it all, they had to remove my nail polish. My mom was helping the nurse and they used some sort of alcohol wipes. It was a nude neutral color and they were each doing a hand. By the time they were done my mom was scolding me about it being a stupid color and they had not only taken off the polish, but the skin coloring. That was a good conversation starter the rest of my stay.

One of the nurses went with me to the CT scan area. Of course, I was having several done back to back. And I had to be laying down for all of them. And I couldn’t move. It took all my focus to not freak out, keep breathing, and not just sit up. When they got to the scan that included the area around my heart they stopped in the middle. One of the technicians, not sure of the proper title, came in and asked me if I had a metal plate in my chest. I was like, “Pardon me? Not that I know of. I would know that wouldn’t I? How big?” He said, “Significant size, big enough you should know about it. Have you had any surgeries?” I must have looked so dumbfounded. I was like, “Seriously? Not that I know of? I have no idea what that would be? Is this really bad? What could it be? What does that mean you are seeing?” Yeah, this was going great! So, I’m still laying flat, trying to stay conscious, and now I’m freaking out even more. They finally finished up and got me sitting up again. This is about when everybody started to connect the dots that I absolutely needed to stay sitting up. No matter what they had to do, I was staying upright from that point forward. The nurse that had taken me down there was trying her best to comfort me through all of this. I was so lucky to have the team there that day that I did, with only a couple of exceptions.

I was only back in the ER room a few minutes telling my mom and husband about the conversation at radiology when the doctors came back in looking very serious. And they were. They told me they found that I had SVC Syndrome. There was a mass, likely a tumor or lymph node, crushing my Superior Vena Cava. There was a remote possibility that it was caused by a blood clot in the SVC itself, but the images made it look like a solid object so a clot was very unlikely. The clot was the best case scenario. A tumor or lymph node meant that it was a matter of time until I would literally die. They couldn’t tell me if it was minutes, hours, or days. I freaked the freak out! And I didn’t use the word freak, and I totally embarrassed my mother. I was angry, obviously. Here I sat, having these symptoms and no one found anything for six weeks and now this was it. I should have been going to Disney World with my girls. I should have been doing what I needed to do with my family. I should have given the girls kisses before I got out of the car. I wanted to know if I should have them brought back up and in to see me. The doctors said to give them a few minutes and left the room, all but a resident. He stayed and drew me a picture to explain what was going on. He explained that the tumors would be likely inoperable if they were that massive and a lymph node would mean the cancer was likely spread to other organs at this point. He asked, “Do you want me to call someone for you?” I responded with, “Are you telling me I need a minister? If that is what you are saying, you need to say it. Is that what you are saying????” I was pretty much a mess. So much for handling this disease with grace and strength. I turned into a complete angry, witchy wreck. And it didn’t help that this was the first time through any of this journey that That Guy looked scared. He looked pale and terrified, but he was trying hard not to let me know it.

What was most frustrating to me in that moment was that I hadn’t stomped my feet as all this was happening for so long and demanded more tests. Further investigation. Gotten a second opinion. I have a hematologist separate from the practice that is treating my cancer. Calling him and just getting in to see him had been on my list to do for weeks without exaggeration. Lesson learned the extremely hard way. Anyone reading this really needs to take this lesson and run with it. If you feel like you know something just is not right with your body, listen to it. Demand answers and to be taken seriously.

So after the resident who said way too much left, the entire team came back in as did the ICU lead doctor. There was good news. It was a clot. A very solid large clot. I cheered and well, that was a first they heard a cheer for a blood clot they said. I responded that obviously this was treatable and why wouldn’t I be relieved?! Needless to say, I was smiling ear to ear. Then they started to explain how it had to be treated and that it may not work. Well, alrighty then, hadn’t considered that. In addition, they had found blood clots in my lungs (pulmonary embolisms) and would be checking my extremities in the next twenty-four hours. The SVC Syndrome was by far the most emergent of the issues my body was having and first on the priority list. The ICU lead doctor said I might have to lay me flat to put in the line. She was going with me from here to make sure all went alright. It was really nice knowing someone was “following me” physically and going to accompany me that was going to be giving my care once admitted. As I left the ER, I gave my mom and That Guy kisses. Then we found out that they could go with me and wait in the waiting room of that area.

A second very amazing nurse from the ER accompanied me to Interventional Radiology (IR). She was literally holding my hand in the room after we left my family. We both know we know each other from somewhere, and she and That Guy recognized each other as well. We never figured out how we know each other, but she was so sweet and good at her job. They were going to insert a Central Line into the under side of my upper arm to run tPA, an IV clot busting medication that they likened to sand paper. The goal was to sand it down from the complete occlusion and get it opened back up the best they could in the next forty-eight hours, the general limit for how long you can get this particular medication. So, I was shaking as they told me the entire process. It was the same doctor that had done the Port Study a month or so before when I had the fibrin sheath on the end of my port. I was starting to connect the dots that this was all related, or at least I am convinced that it was. Which would explain why I had some temporary relief after the tPA the first time around. The nurse was due to leave, but she stayed as long as she could to make sure I was going to be ok.

IR is an amazing place I came to learn over the next few days. They gave me some sedation medications, but I was awake just as I was for the port placement, as they placed the central line in my arm. I could watch the view they had of my chest as they inserted a little camera in there and checked out what was going on. I could also see my vitals! My heart rate apparently was letting us all know I was quite excited about all this. I was still a total mess so they had to give me more medication to calm me down. The guy who was doing the medicating had done the same during the port study and also remembered me. Seriously, for a large hospital there are a lot of people there who make it seem a lot smaller and personal.

Once the port was placed, I was taken to a private room at the very end of the hall in ICU. Another stroke of luck! The staff all remarked that it was such a small room, but I was happy to be in my own little world without anyone across from me. The nurse that night was a sweet lady and the ER nurse accompanied me up then left to go home to her family. It had been an absolute crazy day! Finally settled in and thinking I would be home in just a few days. Oh, so silly! It was decided that my husband would stay over with me the first night. My inlaws had already gotten our dog and the girls were with my parents. While That Guy ran home to prepare to spend the night, my mom and I talked to the nurse and she explained so very much to us with how things were going to go moving forward. The entire team I met the first time was so sweet and caring. Apparently what I had was not common at all so I was kind of an opportunity for all of them to learn and treat it. I felt a bit like a freak show at first, since a lot of them came in to see what it was, how it looked, and so forth. That was on me though, they never made me feel that way and after a bit I realized it was kind of a good thing in a way. They were all very caring and wanted to learn. Not just to help me but to help anyone they might treat in the future.

My mom was slowly contacting family and friends she could to let them know what was going on. In addition to my upper body swelling, including my eyelids, face, neck, and chest, my arms had started to swell and I could no longer bend my fingers or move my hands. I couldn’t pick up a water cup and sip from a straw. I couldn’t text anyone. My hands were huge! Not just my fingers. And I was still plum. That said, all I could see where my arms and hands at that point. This was a good decision on everyone’s part to not let me know what was going on. I wasn’t allowed to get out of bed, use my hands or arms, and I couldn’t lay flat. You can just do the math on that one for how I had to use the bathroom. So much for any dignity! Somewhere in the day bloodwork had revealed a potassium deficiency, so they started an IV of that. That burned like crazy, which is normal apparently. I had several IVs going into both arms, including the central line. So there were a bunch of those IV tree things in my room. I couldn’t keep my eyes off my vital signs checking that I was still alive, I suppose. They had the screen behind me and turned but I was obsessed with seeing it. I think that is pretty natural, no?

After the day I had, I should be able to sleep no problem, right? That Guy fell right asleep, even though he was scrunched on the bench seat. I thought his job was keeping an eye on the vitals and me!? So then I was up most of the night keeping watch on myself. Trust me, it made sense at the time. Yes, I know they have those monitors watched like crazy in ICU. There are even cameras they can switch on to see you if there is any question. The nurses desk was also right outside my window so she could see me directly. Didn’t say it made sense, it just was! And everyone knows they are in and out of your room constantly changing IV bags, taking bloodwork, administering oral medications, and taking vital signs. Finally it was the next day! And I had made it through the night! One night down. Away from the girls. With a pretty good team watching over me.

 

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Comments

  1. Oh my goodness, that must have been so scary! My heart is racing reading this. This is one story that I am very happy to have an idea of how it ends as I read it. Kate was pressing on that artery for the last couple months of my pregnancy which I thought was pretty uncomfortable so I can’t even imagine what this felt like.

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    • What in the world? I never knew a baby could press on it. Yes, take a deep breath:) It was terrifying and I really can’t even believe looking back at it all that went on. Obviously I’m here and writing about it! Yay for that!

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  2. Oh my how scary indeed. What a horrible experience for you and your family to have to go through.

    Liked by 1 person

  3. I am in admiration of you Nicole, you have been going through so much and this blog post was definitely a ‘scary’ one, to say the least! So glad that your family (mom, dad, That Guy) are such a great support system for you, and YOU are an awesome person and wonderful mom to your little girls! Keep up the strong attitude! 🙂

    Liked by 1 person

Trackbacks

  1. […] here we are, day two in the hospital, after a sleepless night and quite a day that led us here. That Guy was with me, my dad still hadn’t seen me so he came up at some point that morning. […]

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  2. […] small part of the SVC Syndrome diagnosis and dramatic hospital story that I didn’t include in the original posts is a little detail […]

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  3. […] top of things plus I had my navigator to ensure things were done. Unfortunately, about the time my SVC Syndrome was diagnosed and I was hospitalized, my nurse left to care for the inpatient oncology unit. I did […]

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