Don’t Mess

Today is what I call “MRI Day.” What is MRI day? MRI day happens every four months, (used to be every three) and it is almost a full day at the Brigham and Dana Farber to check the size of Frank. I start with a 7:40 a.m. MRI, (7 a.m. arrival) then 10:15 labs, and 11:30 results with the doctor. The doctor normally runs up to two hours behind so there is a lot of waiting. Today was the first day I brought my laptop, which I am really happy about because I NEED to write. My fingers are currently slamming on the keyboard in the Dana Farber cafeteria.

Alarm went off at 6:15 and I whined as I heard it, knowing what today was. I also woke up in a weird mood because I had one messed up dream about an ex from college and another disturbing dream I can’t remember. One of my medicines makes me have messed up dreams – I mean things I would never, ever think. I threw on some comfy clothes and my lucky jewelry – grandma’s watch, my cross bracelet, breathe bracelet, purple sarcoma bracelet, and lucky elephant earrings (thanks Lauren J). I could kind of tell walking out of the house that I was in one of those on-the-war-path moods.

I go to these days by myself now because it is just easier and the tumor has been stable for almost a year? I think? I have my routine down – I know which MRI machine I like, where I like to get breakfast, what questions to ask, etc. My on-the-war-path mood was confirmed when I got my sheet to fill out at the MRI place. On the back they make you list out your medications, which always pisses me off because I have so many and I know they are on my chart. So, today I wrote, “you have these listed on my medical chart, not writing them out.” BOOYA! They call me to get changed and I have to put on the gross hospital pants and gown. I lock up all my stuff and I was off to get my IV put in (need it for the contrast injection during MRI). The girl asks the typical, “Which arm?” and I say the typical, “Doesn’t matter, I just have small veins.” She looks around and decides on my left arm – for some reason I could tell she wasn’t going to be good. Yes I have small veins, but they are great veins and if you are good you get them right away. No second shot! (Learned that from my momma!) I never look at the needle because I just don’t like to…so I feel the prick and then she is friggin’ fishing around in there. Then she says, “Your veins don’t like needles, huh?” And I said, “They do, they are just small.” Again, I KNOW that my veins are great, you just can’t see them. At this point I think she saw and heard my sigh/eye roll as she was still fishing around. She said, “Sorry.”

The damn needle was finally in and the girl came over to bring me to the MRI. Needle pokes and fishing are no big deal for me now, but again, the mood. So the girl starts walking me down the hall and I say, “Music, right?” She tells me that I am in a different machine and they don’t have music there. I have had probably seven MRIs at Brigham and I specifically go to a certain location because the machine is slightly bigger and they have music. Poke #2 to the bear’s routine.

I lie down on the MRI table and they start to hook up all my shit. Earplugs, contrast to IV, big heavy thing over pelvis, and emergency squeeze ball in right hand – I know the drill. The helper dude introduced himself and I thought to myself wow, good job, just introducing yourself makes you feel like a person to me, and me feel like a person to you. Thanks, Dave? …Don’t remember his name ha.

The MRI is normally about 45 minutes. The girl told me that if I needed other headphones for the loud noise to let her know. The thing is pretty damn loud and I normally have extra headphones for the music. We start with a few pictures and some breath holds, and it’s wayyy too loud for me. I am thinking, ugh I should ask for those extra headphones but I don’t want to. It’s too much effort to speak up and I don’t want to be a pain. Then after two more pictures of loud ass noise in my ears I thought, you are the patient and you can ask for whatever you friggin’ want. It is their job to listen to you and your needs. I spoke up. She came in and gave me the headphones, no problem. I consider myself a VERY outspoken person, and I ask a ton of questions about my care, but I am still working on noticing those times when I am reluctant to speak up. It’s just so hard as a patient.

The MRI actually went by pretty quick today. Yes – I just said one positive thing! We get to the end and she injects the contrast, which makes you feel like you peed your pants. A few more pictures and they came in to get me out. The nurse starts taking out my IV and I said that I needed to keep it in because I am headed to the Farber for blood work. She quickly says, “You can’t keep it in. It’s contaminated. They should never do that – the labs could be wrong.” I told her that they have done it every time. She reassured me that it is not ok. I believed her, but then thought, are you fucking kidding me that you are the first person correcting this? So all of my other labs have been wrong? NOT ok.

I get back to the changing area and while I am waiting for another woman to get out, this lady starts chatting with me. Tells me her sister has cancer and I told her I have a pelvic cancer and she is in a great place, blah blah blah. She then starts to say that she has had a hysterectomy and has some bleeding. She wanted to know if I had that and thinks maybe she has what I have. OMG seriously…you don’t have what I have because of your damn pelvic bleeding lady. I am not in the mood for this. I know everyone’s problems matter but this is me, and my mood today, in all its honesty.

I headed to Au Bon Pain for breakfast because they have better breakfast sandwiches than the Farber cafeteria. A quick call to my mom to bitch, then I was off to the Farber to grab a spot in the caf where I am now. I could really do without the TERRIBLE elevator music and “inspiring” stories around me on the walls and TVs today. I saw one of the heads of hospital in the cafeteria that I work on the Patient and Family Advisory Council but I pretended not to see him all three times he walked by. Just not in the mood. Can’t mix patient time with patient advocacy. Too much.

I’ll be here all day ladies and gentleman…no, really ha. Hopefully the rest of the day goes smoothly, we shall see.

Don’t mess…

Recovery X2 (Part 2)

I just ate pizza! Wahoo! I made it really soft in the microwave and cut it into tiny pieces and then used the roof of my mouth to maneuver the piece to the back of my mouth to lightly chew. VICTORY IS MINE!

So this was the scheduled hospital time – my tongue surgery last Wednesday. A lot of us cancer patients always have another bizarre thing wrong with them, well mine is in my tongue. I have a benign Arteriovenous Malformation (AVM) on the under side of my tongue. I noticed it in fifth grade and it slowly grew with my age. Docs had been watching it over the years and confirmed it was benign, but would grow with age and change with my hormones. It started to give me jaw problems and on some days it would swell and affect my speech, so I decided it was time to take care of it.

Boston Children’s Hospital is the place to go for these. Their Vascular Anomalies Center is world-renowned. The plan was to do sclerotherapy on my tongue, which basically means they do an angiogram to see were the blood is flowing and inject my tongue in different places to clot the weakened vascular walls. When I finally made the appointment for this procedure I couldn’t sleep because I was trying to maneuver my tongue in all different ways to make it feel 2-3 times the size. The docs said it would swell to at least 2-3 times the size, and I would be in the hospital anywhere from 1-10 days – if 10 days then time in ICU. That’s not a big range or anything!! My doctor called it the “tongue party” because it is very unpredictable how much it will swell.

***

Parental units arrived to my condo the night before surgery. My dad had his foam pillow and my mom had a ton of presents for me including a new monkey – Cooper! We watched a little of The Voice, I briefed my parents on my typed document with all my doctor info, (I get anal before surgeries; I guess that’s how I deal) and then we caught some zzzz’s.

To be honest, I wasn’t all that nervous for this procedure, I think mostly because I was hungry, (couldn’t eat the morning of and it was a 1:30 procedure) and I just didn’t have the energy to be nervous. The recent ER visit took everything out of me and I had no choice but to just go with it. Also, I unfortunately knew the drill.

We waited for about 20 minutes in the Interventional Radiology reception area with Dora the Explorer on TV and the tiny kids chairs with baby tennis balls on the bottom of them. Mom and dad were sitting and I was pacing in true anxious Becky fashion. The nurse then took me back to get my vitals, ask me a bunch of questions, and put on my gown and those gross hospital socks they give you. Then the fellow came over to talk me through the procedure and the doc came to see me too. I felt…calm?

Mom and dad came back and the anesthesia team came to see me. I, of course, asked for several “cocktails” and they assured me I’d get them. The anesthesia resident with the biggest rock I have ever seen (almost ugly because it was so big) put in my IV. Before I knew it, it was time for my cocktail. These things are great, you instantly feel drunk (?) but the best happy-feeling drunk. I think I kissed my parents and they wheeled me into the room. I was much more alert for this than my other surgeries. I moved onto the OR table and had to put my head in this circular foam thing. They gave me some oxygen, put a blood pressure cuff on that was tight for too long, and told me to think of a nice place. SEE YA.

***

Beep, beep, beep. “Becky, Becky…” It was over and I was awake. I immediately checked my surroundings and I seemed to be in recovery and had no tubes in my mouth or anything. My tongue was really swollen, but I felt more alert than when I woke up from my other surgeries. Where are mom and dad?

A few minutes later mom and dad came in and said I did great. Mom gave me Cooper and he immediately went between my chest and my chin. My mom told me the doctor said it went great and it was a “textbook tongue.” The fellow came to see me a few minutes after that. The doctor couldn’t come because he was busy at a reception getting an honorary degree, ha! These doctors are unbelievable.

I started with a red ice pop with a towel wrapped around it. The pain wasn’t really that bad. It was just the swelling and numbness, granted they were giving me IV pain meds and steroids. After shift change/a couple hours later I got to my closet of a room. The floor docs came in to see me and it turned out I worked with one of their wives. Small world! They said they wanted me to stay overnight because the swelling could get worse day two or three. So mom and I were hunkering down for the night and dad went home to my condo. Mom had to sleep on this chair turned bed thing.  At first it was too far for me to reach her hand through my bed rail so I made her move closer so I could reach J. My nurse was a doll, his name was Bong and he took care of me all night and tried to be quiet when changing my IV meds.

The next morning I was ready to go! I literally did a little flailing dance in my bed because it was so different to have surgery where I could move my whole body. The fact that I’ve had three major abdominal surgeries actually helped with this recovery, because my perspective is probably different than the average person. This was a walk in the park. Would I have opted to not take the damn walk if I could have? Yea, but what are you gonna do.

Mom and dad got me home and in bed for a nap, while mom made me homemade soup. It was so nice to have them taking care of me because the ER experience was so awful :/. Mom woke me up during the night to give me my meds. The next day mom and dad cleaned the crap out of my condo and hit the road.

Recovery…soup, pudding, painkiller, applesauce, antibiotic, sleep…repeat. Each day my tongue is less swollen. If that is anything I know about recovery, each day gets a little easier.

I hope that I don’t see the inside of a hospital again anytime soon…