The rest of the story

Yesterday was a really long day.

I was at the hospital at 9:30. I headed straight to radiology and figured I would have the usual 15 minute or so wait. I didn't. I was taken back almost immediately, but I was excited to find that my nurse was the same nurse I had when I had my port placed. She also has called me another time to do a pre-screening checklist for one of my MRI's. She is one of my favorite nurses and she saw I was on the schedule and traded the patient she had or was supposed to have, so she could have me.

Unfortunately I only had her before my procedure, but still it was a definite bright spot to my day. After she got me ready, I was taken back to the interventional radiology room that I was going to have my port procedure in. It may have been the same room I originally had my port placed in, but I'm not sure.

The nurse practioner accessed my port and then attempted to flush the port as I took deep breaths. There is a 60" (or close to) tv screen/monitor in the room and a giant "xray" machine that moves to be over the patient (me). With this machine we were all able to see everything the NP did in real time and whether it made any difference on my port. It didn't. She tried multiple times, but in the end it was decided that in order to fix my port I was going to need to have a catheter inserted in my femoral vein in my groin.

I was not excited about the whole having a cath procedure done. I had already met the fellow that would do my cath "in case I needed it." He came back into the room and did an ultrasound to find my femoral vein. This was the part where I almost cried. Of course it wasn't externally painful, but emotionally, it was extremely painful. Before my procedure I was required to give a urine sample for a pregnancy test. I wasn't sure if I thought it was funny or if I was bitter. Probably both. I really just wanted to say "are you kidding me? you guys have already killed everything! how could I possibly be pregnant?" but then to have an ultrasound it really brought it all home.

I've said it before and I'll say it again. We had planned to have 3 children. We knew that was what we wanted. We had everything planned. We know life doesn't always work out the way you plan, REALLY we know...but this is one of those things that we never thought would affect us. We love and cherish our 2 children with all our hearts, but that doesn't mean that it doesn't hurt that we can't have the third one. It is something that we think about everyday. We talk about it to some degree nearly daily, but having the ultrasound was something I had to take on by myself. I knew that if Geoff was with me all I would have had to do was look at him and he would have known. He would have hugged me or given my hand a squeeze or even just given me a look back, but he wasn't there. It didn't matter to me that they were using the ultrasound to decide where to slice into my femoral vein or that they gave me a couple injections of lidocaine (which stings). All I could think about was that stupid ultrasound.

Then they put the ultrasound away. I watched the radiologist thread the sheath (a hollow plastic tube that they put in to my vessel to help thread the catheter) up my femoral vein through my heart to my port. It was interesting the first time he did it. It was less interesting the 6th or 7th time. Unfortunately each of the tools that he inserted with the hopes of "grabbing" the internal part of my port did not work. My port would not budge.

I went to the bathroom before the procedure (remember I had to do that pregnancy test), but with IV fluids going I had to go again about 30 minutes into the procedure. This means I had to go before they ever started the cath. I laid there quietly fantasizing about how badly I needed to use the bathroom and praying it would all be done soon. I also convinced myself that despite my nursing knowledge and background that somehow I wouldn't be put on bedrest precautions after my cath so it wouldn't matter and I would be able to actually use a bathroom.

Eventually the fellow asked the attending to come in and assist. They worked together for awhile, then they had a little pow-wow off in the corner, then came back and worked together for awhile again, and then decided that best answer was to remove everything including the sheath and insert a larger one. By using a larger sheath they could insert two catheters and they could work together to see if they could reposition my port. By this point I was pretty much done. I no  longer saw the value of keeping my port. I had to go to the bathroom REALLY bad and I had less than a half hour before I was supposed to be at internal radiation. It didn't help to watch the look on one of their faces as I could feel a hot sticky liquid (blood) drip down my leg and the other quickly attempted to stop the bleeding (and this was while the sheath was still in). All I could think was "crap. I was already anemic going into this."

Finally I admitted to my nurse I really needed to go to the bathroom. Other than the initial lidocaine injections I had no pain medications and she kept checking to see if I wanted something. Keep in mind though that my options were limited since I was off to anesthesiology next. I didn't need something for the pain, I just needed to go to the bathroom. I didn't plan on her doing anything about it at that point, I just wanted her to know so when we were done she could have a plan.

She of course told the whole room and they offered to stop and let me use a bedpan. I declined. They promised they were almost done. I wasn't sure I believed them. Remember,  I was watching the whole procedure myself and I have enough knowledge to know that none of the catheters they had used up to this point had even budged my port. At the same time, once they were able to each have their own catheter and work together it really only took them about 10 minutes to fix everything.

Before they removed the sheath which requires them putting physical pressure on the groin site for 5-10 minutes they asked if I wanted to try the bedpan. By this point, I really did feel like I was going to explode so I reluctantly said "sure." So my nurse brought me a bedpan and positioned it under me and then walked away. The door to the room to the outer hall was closed, but inner door for staff and the blinds in the window were left open. People continued to walk in and out of the room and I could hear people saying "oh, she needs to use the bedpan." This coupled with having to lay flat to urinate did not work for me so I gave up and told them to just go ahead and remove the sheath.

Finally I was done and transported to my hospital room. I always get one of two rooms (they are right next to each other) and I usually have the same nurse, but unfortunately for me he was on vacation this past week. I met my new nurse of the day and told her my dilemma. I explained that as soon as I went to radiation they were going to put in a urinary catheter so if she just wanted to get it done that would be ok (this equals desperation for me). She suggested a bedpan. All I could think was "are you kidding me?...didn't I just tell you I tried that already?" Instead I said "sure I guess I can try again." She made some comment about leaving me alone and giving me complete privacy and having me call when I was done. That made the difference.

From the time my cath was done I had to lay flat for 4 hours and be on bedrest for 6 hours. I knew radiation would kill the 4 hours of flat time so I was relieved because I can't even sit still to let a manicure dry much less lay in bed for hours at a time. I was amazed that I was able to use the bedpan but it was only because I had to go so bad. Unfortunately for me, my nurse then spilled it on me. She also made some crack about how much better I'll be able to relate to my patients some day. I was NOT amused.

To make matters worse, my nurse became obsessed with the laying flat precautions and decided maybe it would be best to delay my radiation therapy until after 4:30 because of how I would have to positioned for treatment. She had a point, but I was seriously pissed at the idea of my day being extended by another 4 hours. Fortunately for me, the radiology MD's and my radiation MD talked and decided to go ahead with my treatment asap so next thing I knew anesthesia was there to wisk me away.

I had my final internal radiation treatment and I remember very little of it. I didn't wake up until I was in recovery and even that I remember very little. I was still pretty groggy when I got back to my room, but I was happy to be back with my phone and iPad. I texted Geoff and my parents to make sure everything was ok with the kids and everything was on track for picking me up. I tried to call Geoff too, but for the first hour every time I would pick up my phone someone would come in. My nurse, the nursing assistant, pharmacy and then my radiation oncologist.

My MD said the stubborn spot on my cervix has shrunk dramatically in the last two weeks. It was 1 cm x 2 cm and now it is "about the size of a pencil eraser" or about "0.8 cm." This was pretty exciting news. At the same time she told me that even though she usually doesn't have patients come back for 4 weeks, she wants to me come back in 2 weeks to see her and to see my other oncologist. All the appointments were already made and I am to stop and have labs drawn before my appointments. I have my suspicions where this is going, but I have decided to be excited that I am done for now.

I ordered some food while I waited for my bedrest precautions to be done. About a half hour before they expired I removed my catheter and Geoff showed up. We had everything timed perfectly so I could go home. Unfortunately, pharmacy never sent my nurse the heparin syringe she needed to deaccess my port so we waited and waited and waited. She did eventually get one, but I'm not sure if it was from pharmacy or from some other unit that keeps heparin syringes stocked that I may have called myself.

When I was finally discharged it was about 7:30 so I decided to take a victory lap up to see my old co-workers. We had Ella with us, but not E (he was with Geoff's mom) and it felt right to finish off my treatments with congrats from my favorite nurses at UW.