So, HEY! Lots of stuff and things have been going on around here, I'm STILL re-writing that last post that I promised forever ago, erm.....but the goings-on of the last few days really should be blogged about rightnow.
This past Friday night, my Nan and Uncle Jeff flew down to spend the weekend with Mom and Phil and I. Let me just tell you, it was like a big, warm fuzzy hug around my soul to see them in person and to spend time laughing and talking- feeling normal. Silly things that feel normal like having a cold cut lunch together on Saturday that reminded me of all of the lunches we had as a family when I was a kid at my Nan's river house. Sitting together in the small living room here and laughing, just like we do before dinner every time we gather at home. These things just stitched my heart right up:) We also went totally touristy and visited Johnson Space Center, which was just SO fucking cool. No really, if you are ever in Houston (though the Space Center is not actually in Houston), SERIOUSLY go be a big nerd and visit NASA. Standing next to a massive rocket that has been outside of the atmosphere that we live in, and was engeniered, built, manned and maintained by people in the buildings surrounding you is...really awe inspiring. The company was pretty awesome too:)
Sunday, Mom took my Nan and Uncle out to lunch and to Hermann park for a nice walk while I rested my aching knees and dealt with some ummmm, uncomfortable and unfortunate symptoms of something I'll explain later. We ended the weekend with dinner out at a local grill, which was also the first time I've eaten dinner out since August. While I was a touch paranoid to take off my mask, I was shocked at how good it felt to be free of it for an hour. Nan and my Uncle departed on Monday around lunchtime but unfortunately Mom and I had to say our (tearful) goodbyes the night before because I had a full day scheduled at MDA. Which brings me to the absolute mess that was Monday. Strap in.
This adventure includes, but is not limited to: vomit, a car accident, cirque du soliel and lots of urine. Just a heads up.
Monday morning, Mom and I set off bright and early to MDA so that I could get my new CVC dressing changed (oh mama, my comfy new CVC patch....I'm in love) and so Mom could see how to change it. Afterward the plan was for me to get my labs drawn, Mom to go run errands while I napped in ATC and then I would head over to the hospital to visit a friend and Mom would come pick me up around dinner time. We had a schedule! A Plan! And the universe laughed...Well, most of that happened. It was all the other shit in between we could have done without. Allow me to weave you a tale of massive WTFness.
Now, I've mentioned before that weird things happen post-transplant, especially with viruses and their tendency to reactivate themselves. This story is about one of those such (possible- the culture isn't back yet) viruses that something like, 90% of us are running around with unnoticed but never have problems with unless your immune system becomes weakened. The virus in question (and I don't know what it's called, gotta ask for that one) shows up when you're a kid as a cough, sometimes no symptom at all, and then lays dormant in you until it's given the opportunity to raise some hell, in which case it pops up in your urinary tract to have some fun. I've also mentioned that this is a cancer blog, so far warning that there's gonna be some TMI in the following paragraphs, don't say I didn't warn you. Mmkay.
Here's what's up: Ladies, you know what a UTI feels like when it's starting to rear it's ugly head? Yeah, thought so. Imagine that, but not that at all, instead a really weird intense tingleburn that lingers after you've...uh...finished peeing..so but yeah kinda also like a UTI...ahhhhh I can't figure out how to adequately explain it. Let's go with: it's weird and uncomfortable and a little painful. In addition, my bladder has decided to set itself to "FUCK YOU LAURA" and make me have to RUN to pee LIKERIGHTNOW every ten to thirty minutes. This nonsense started over the weekend, and after an hour long game of phone tag with the BMT doctor on-call on Saturday morning, we were told assured this was likely the result of this virus that has been reactivated ("it's about that time post transplant" is what the doctor said. thanks for the warning), not a UTI, On-call doc gave us the go ahead to wait until Monday unless blood or fever popped up, in which case I was to go to the ER and told me to "push fluids and take pain meds". So that's what did. By Monday, I was well hydrated, woozy and still peeing like a racehorse every ten minutes (also Phil flew back to Philly on Sunday night so I was husbandless).
So, back to Monday! We (Mom and I) get my CVC changed and collected the prescription for the new dressing (and I was told by the IV nurse that she thought I was 14 and that's why she only spoke to my Mom the whole time she was scraping around on my chest...apparently my wedding rings didn't tip her off) and head over to the other side of the floor to the Lab. At this point, I was starting to feel the effects of the pain medication I took in addition to my morning meds and was beginning to regret not having eating much more than grainy bread and a shmear of Nutella before stumbling out into the world that morning. Usually, these kinds of drugs don't effect me in the dizzy-wobbly-slur your words-upset tummy kind of way so I was beginning to get scared about how I was feeling. Once I had my blood drawn (Monday draws are rather large-10 or so vials for blood cultures) I walked into the lobby where Mom was waiting and chatting with a very nice looking woman who was asking Mom about my scarf. This is kind of how this interaction went: Lady: "Hi! How do you tie your scarf like that" Me: "Uhhhrrggggg I am about to vomit" ::runs off down the hallway, furiously working NOT to yam on the floor, and into a staff bathroom. Thank goodness my thigh strength is coming back because I crouched there WAITING to puke for a good 10 minutes. Waiting, waiting, waiting....uhm, hold up. I don't need to puke any more. So I didn't. I got up (still woozy), scrubbed the hell out of my hands which had been grasping the toilet for dear life, and went back out to find Mom. Seriously, WTF was that?
Mom was concerned about leaving me until I had a bed in ATC, and was also concerned that I hadn't eaten enough, so she walked me up to wait in the ATC clinic lobby, left me in the gentle hands of Mrs. Patel, the mother of another patient-friend while Mom grabbed me lunch from the cafeteria. The nausea went away during the hour and a half wait for a bed, but I still felt woozy, not quite right. Well, turns out my blood pressure (which they take before processing me for a bed) was CRAZY high. Like, 158/110 high. The nurse took it four times on three different machines and ALL three machines read it high. All I can do is shrug. The took my pressure later that afternoon and it was 120/80. Could the wooziness have been from that? Why did my pressure go so high? ::shrug:: Who knows.
Long story short (because there's more interesting stuff to write about and I keep falling asleep while typing this- gotta stop writing at night...): I get my bed in ATC, Mom leaves to go run errands, I get hooked up to my IVs, inhale lunch and shut out the lights for a nap. About an hour into my go in ATC, I get this text message from Mom: "not going to the grocery. was rear ended by some jerk. i'm ok just have to deal with insurance and rental". OMFG! So, here's my Mom, just going about her day, taking care of me and being so many hundreds of miles away from her husband, had to deal with a scary car accident in a strange city and friggin painful whiplash. She's ok, thank god, just shaken up with a very sore neck and back, but she doesn't need that crap. The other drivers, there were two cars hit (Mom at the redlight in front, car sandwiched between her and the car that caused the accident), were also in crazy situations. The man who caused the accident has a wife being treated at one of the other hospitals in the Medical Center, the woman who ended up sandwiched between my mom and the other car was six months pregnant, and well, you know about my momma. Everything turned out just fine, the car was not too damaged and the offending driver's insurance is going to take care of everything. Oh my my my. THough I offered (almost insisted) to take a cab back from the Hospital so Mom could rest, she came up later that evening to get me anyway. Thanks Mom:) I'm so glad you are ok!
After finishing up in the clinic and putting in for refills on a few prescriptions (two of them to help with my bladdery nonsense) I visited with a friend who is going through treatment (nay, ALMOST DONE her treatment! Yay Sarah!) inpatient. Sarah is extremely kick ass and it's always fun to hang out with her, it's just a huge bummer that she was hooked up to some gnarly chemicals this time (in a pimp room no less!). Sarah had another friend visiting as well so the three of us spent the late afternoon just hanging out. When it was time to say my goodbyes so Sarah could get some rest and I could pick up my prescriptions, I ran into Elsa, the Y Service coordinator. Elso proceeds to tell me that she was going to call Sarah and I tthat night anyway and is so glad to run into me because......SHE HAS TICKETS FOR US TO GO SEE CIRQUE DU SOLIEL ON SUNDAY AFTERNOON FOR EACH OF US AND TWO GUESTS! Friggin score! The awesome part about this? My best friend in the entire world is flying down to visit this weekend on the same flight as the hubs and will be able to come! The bummer about this is that Mom can't come because she's flying up to St. Louis that day to visit her sister, my Aunt Chris :( (that's a sad face for Mom not being able to come, not for seeing Aunt Chris:) ). So thank you Volunteer Services at MD Anderson, you guys seriously rock!
When Mom and I finally made it back home, the rest of the evening was pretty uneventful. Mom and I slapped together whatever was in the apartment to eat because frankly, neither felt like cooking and Mom wasn't too down with driving all the way over to the grocery. MMM soft pretzel and steamed vegetable dinner...so...weird:). The advantage to being a walking science experiment is that, when something happens to your caretaker, you have an arsenal of goodies to help fix them up. I got Mom all propped up and iced and then I busted out my nifty remote controlled heating pad for her to de-car accident on. It was kind of nice to play nurse to someone else, especially Mom, even in just a little way, pay it forward. By yesterday morning, Mom said she felt much better:)
Now, and I feel as though this deserves another fair warning: Cancer blog= TMI. I posted my rashy side boob on here last month, so why not share this little gem as well. One of the two drugs that my doctor put me on to help with the urinary tract symptoms from this wacky virus, has the effect of numbing you up so that you can't feel any pain or discomfort when "going". The other drug is that "Gotta go" song drug that tames the bladder freakout, but this takes a few days to kick in (in the meantime I just sing the song in my head everytime I go scampering in to the restroom). Here's the problem. I have to take sleeping pills to get adiquate sleep. My bladder doesn't understand this because he dropped out of internal organ high school or something. It also doesn't care that I can't feel it being a bastard in my sleep because I am numbed and tranquilized. Well, that is until I wake up and find that....drum roll please!!!......I peed in my fucking bed. IN MY FUCKING BED. Even better? The numbing drug dyes pee bright orange. BRIGHT FUCKING ORANGE PEE IN BED. WHAT. THE. FUCK. Here I am, it's 3 in the morning, I feel like a toddler, don't want to wake up my poor mother for help, so I rip all of the bedclothes off, clean my gross self off, scrounge around in the linen closet for any kind of sheet for my bed- all the while totally wacked out on Ambien. You want to hear what's really fucked up ? About an hour later, it nearly happened again! But this time...this time you little bastard bladder, I was prepared and managed to not revert back to childhood (for the record, and you can ask my mother, I was NOT a bed wetter. pinkie swear) and can not say that I wet my bed twice. So there. Jeebus.
Why in the HELL, you may ask, would you just admit to wetting the bed at 25 years old on the internet for all to see? Well, because it fucking happened. And it has probably happened to another patient, and WILL happen to someone else. It may even happen again to me. It happens and there is no fancy philosophy to be seen here other than, sometimes you wet your bed and have to deal with it. There ya go. As mad as I was about it at 3 am, by noon it was pretty freaking hilarious. Nay, really freaking hilarious. If you can't laugh about it (and sometimes there isn't much to laugh about), you might as well hang it up and go home. Besides, the real joke is on my unruly bladder....I spotted a box of Depends buried in the back of the cupboard in my bathroom. Do I dare? (fuck no. that would scar me for life)
Today, Mom and I just basically sat around (she did head up to the store to buy about a billion pounds of fresh veggies- and chocolate chip cookies!!) and tried really hard not to have anything interesting happen. When I say sat, I mean, sit for twenty minutes, race to pee, curse under my breath, and then return to sitting until the next round comes along (it's good exercise or something- which is good because it's impossible to practice yoga with a constantly spazzing bladder). Monday was enough, thank you very much, no need to be fancy today. Also, Mom says that her neck and back are feeling better, she looked more comfortable this afternoon:)Tomorrow, much of the same with a wig trim thrown in if the 'ole bladder signs my permission slip. He was being kind of an ass earlier so I don't know it he'll say it's alright. Jerk.
So yeah, haven't been fantastic about updating lately. There are good reasons for that which I will get into in another post, but for now, I will leave you with a picture of my new best friend: pink, squishy, SMALLER, CVC dressing (ahhh the little things, no?). I can't even explain how much this little guy has improved my quality of life since he came to live with me. I lub him:)
Much Love to you, dear friends. Many thanks and so much gratitude for your support through all of this. You are blessings in spades and I and my family owe you a debt of great gratitude for the walls of comfort you have built around us. Today, Wednesday, November 10th, is day 75. Almost home. Almost back where we belong:) Love you all...