MRI, Fever, and Blood, OH MY…..Posted: September 21, 2013
This has been a hell of a week.
Monday was Breast MRI day. I was super nervous but had been taking Ativan all weekend and popped another one that morning. I was practically asleep on the way to USC. The MRI wasn’t done at USC Norris, it was done across the street at the USC imaging center. The staff there weren’t as helpful and friendly as the staff where the PET/CT was done but they were friendly enough that I felt comfortable.
Since my capris didn’t have any metal in them I could wear them in the machine but had to change into a gown (open in the front please) for my top half. Makes sense since that was the area to be MRI’d. After I changed, they stuck stickers with things on them (I think they were locators) where my tumor is and then put an IV in me for the part of the scan where the contrast media is used. I was a little pissy because they stuck a 22g needle into me which are very uncomfortable (my veins are super small). I lobbied for a 24g (what I always use and is smaller than a 22g) and they gave me some crap about the needle needing to be large enough to let the contrast media through. I call BS on this because I have freaking blood product go through a 24g and there is no issue. But anyway, she stuck me and got it in.
A few posts ago, I drew a picture of a breast MRI:
It pretty much worked this way. Pretty much.
First off, in the USC MRI machine, you are laying almost flat on your stomach, maybe inclined at 4 inches. The boobsling is about 1 inch lower than the incline so instead of leaning comfortably up with your chest down, you are leaning up, then forced to hunch your neck and shoulders down so your boobs fit into the sling. The sling is more like a two plastic measuring cups with magnets all over the outside. Think of it looking like one of those two bowl dog/cat feeders that are on a stand (for optimal digestion!). Then your chin and eyes are resting (HA!) on some pads. You can’t look forward or up or your position will change and you have to be repositioned. They get mad at you if that happens. (believe me!) Your arms are in front of you and you have the panic button.
Then you are told not to move for 30 minutes.
Well, history repeated itself and before they got started I asked if I could look up. They said sure (they were still positioning me) and so I did. Why, oh WHY do I do this? Of course I had a panic attack and had to actually leave the MRI room. In their pleasantness, they told me that I had to come back and tell them if I was going through with it because they “had a schedule to keep, you know!”. Fuckers.
Excuse my language.
So I got back in and got it done. And have been paying for it ever since!
Having aplastic anemia makes it hard to exercise which leads to severe muscle weakness. Because of this, the muscles in my lower back are non-existent. Having this exam has led to the following:
1. Excruciating lower back pain. I almost has to stop the MRI because my back was SCREAMING in pain. Luckily as I was getting ready to push the button, they popped in and told me I was done.
2. Huge pain in my shoulders and neck. From holding the hunched-over position for that long.
3. A week-long pre-migraine
4. Feeling like my ribs were broken for 4 days. This goes back to the boobsling being lower than the thing you are resting on. You have to basically hold the area directly under your breasts on a sharp edge while you are hunched over and this is so painful. Just awful.
To add insult to injury, apparently I was breathing too much (breathing helps me live! It also helps me prevent panic attacks). The fuckers in the booth told me that the images were blurry and I may have to redo it if the radiologist can’t read it. Uhm. NO! My body is just recovering. I couldn’t get out of there fast enough.
Mom drove me home and we went to Brandon’s for lunch. mmmm. Then we went home and I basically passed out until later that night. Ate some dinner. Passed out again.
When I got “The Fever.”
Again, because of the Aplastic Anemia, I have basically no white cells. My white cell count is 0.7 (normal is 3.5 – 10) but the important sub-white cell count, neutrophils, was at 0.2. Neutrophils are the things that power your white cells. Anything under 0.4 is life threatening. You are susceptible to all kinds of infections. This is called being Neutropenic. Things that may take a normal person a day or so to get over could take someone neutropenic a week or month to get over. The flu or high fever could kill as without the white cells, the infection could go septic. My protocol is if my temperature is 100.4 or above, I’m to page my doctor and get to USC Norris as quickly as possible.
5:00 am: I wake up and my body feels like I’m on fire but I can’t get warm. Check my temperature and I’m 100.6. I start drinking a lot of water and put a washcloth to my head to see if I can get it below the magic 100.4
5:30am: Feel like crap. Take my temp again: 101.8. So. Not. Good. Rouse mom out of bed. Vomit a little. Call the hospital and start getting ready to leave. You know I feel like hell when I pack an overnight bag. I had never in my life stayed overnight at a hospital and I felt that that record was going to end.
After many phone calls back and forth to the hospital, we arrive around 9:30am (thank you very much LA traffic!) and I get to bypass admitting and go straight to the day hospital. My IV gets put in (a 24g!) and I start on antibiotics and get a ton of labs taken. My NP stops by around 10:30am and while we are talking, I throw up like I have never thrown up before. I still have broken blood vessels in my eyes. It was so violent that I dislodged the IV and ended up with huge swelling on my right arm where the IV poked through. My nurse took out the IV and put pressure & a bandage in the area. While I was waiting for her to come back and put another IV in, I looked at the bandage and it was soaked through with blood. I screamed like a girl and moved my arm which then sprayed blood all over my shirt (that also had some vomit on it – shirt = trash). We got it all fixed and my nurse was able to put an IV in an unused vein that ended up being an AWESOME place!
About 15 minutes after this, my brother shows up. Leave it to him to miss the action!
Then the day hospital gave me hospital gowns (one for the front, one for the back) to change into. Now, I have zero experience with hospital gowns, so when I grabbed one to put on, I found myself with a heavy, fabric piece of origami that was supposed to cover me. WTF? I had to call mom in and together we managed to get these on. I got into a wheelchair and my brother found himself being my chauffeur. I went up and got a Chest Xray and then made my way to my room on the 3rd floor as I was being admitted for observation.
All through this my temperature was hovering at the 101 level.
Because I’m neutropenic, I was put into a special room that had a HEPA filter. It had been a double room but the hospital made it into a private room. So it had a bed, couch, chair, huge bathroom and a flat screen HDTV. It was nicer than some hotels I’ve been in. Everyone coming in had to wear a mask (including my mom & brother). The hospital gown was so big and bulky that I ended up changing into my own pjs. I also talked my way into them allowing me to give myself my own insulin and shots.
Dietary there is apparently just like other hospitals. I am on a restricted diabetes/neutropenic diet so my choices weren’t great. I finally just wrote “Turkey Sandwich on Wheat with canned peaches” on my menus. I was seriously uncomfortable in the bed so at around 1am, I took up residence on the couch. I put on Julie & Julia from the available movies and managed to get a few hours of sleep. Then they came in to bug me again. I put on Grown Ups and fell asleep again. At 3am-ish, my fever broke and I started feeling much better. So much better in fact that when the Attending physician came on rounds, I had my laptop, cell phone and snacks/water all around me. She was not sure I was going home when I told her that I WOULD be going home that day. So I was sprung at 3:30pm. Just in time for LA Traffic!
I don’t have anything to compare it to, but it is a great hospital and the staff there are wonderful! Except for one resident who I had to school. My brother & mom were wondering who was the patient and who was the doctor. I was unaware of the whole “needing to measure output with the measuring cup in the toilet” so I probably screwed up their statistics when I took it out 🙂 Gross.
While I was there I had: 4 infusions of antibiotics, 2 units of blood, 5 huge ass potassium pills, and a four hour infusion of magnesium.
So I got home Wednesday evening. I’m still not sleeping well and feel out of sorts. Plus I have to do the following:
1. Wear masks everywhere. Other people’s homes included.
2. No one can be in my house if they are/recently have been sick or around a sick person.
3. No eating out. At all. I am allowing myself iced tea from drive throughs or Starbucks but I’m starting to not like it anymore anyway.
4. I have to have a diabetic/neutropenic diet. So 4 carbs at each meal (1 grain, 1 dairy, 1 fruit, +1 other). I can’t eat fresh fruits or vegetables, they have to be vacuum sealed, frozen or canned. I have to eat cooked food when it’s hot and cold food when it is cold – if either gets to room temperature, I have to toss it. No leftovers. No reheated food. No buffet food. No soft cheeses or sliced cheese or meats from the deli counter. So basically, I shouldn’t eat anything that isn’t cooked by me or my mom (or approved relatives) and most of it has to be processed, pre-packaged, and unopened unless by me. PAIN IN THE ASS!!!
I’ve been eating a lot of lean cuisines and peach cups.
I have had the best blood sugars ever and I’ve lost 4lbs this week. So that is a plus!
On the possibly negative side, I have a feeling that this neutropenic fever incident will remove surgery from my list of options for treating the cancer. This would really suck as the cancer I have is a surgical cancer. So instead of curing it, we would be just containing it. This is just my opinion and my doctors could totally disagree with me.
Next up are appointments with my hematologist and BC surgeon next Wednesday and we should know more then.
If you made it through this entire post – you deserve a cheer!