Wednesday, August 18, 2010

Dear World, meet my CVC

Hi world, this motherfucker is stuck in my chest. It has a small slender tube that goes into my superior vena cava (for you anatomy nerds out there) and three lumens (little plastic doohickies) that hang out of my chest which will be used for my chemotherapy, blood draws, transfusions, and the transplant itself. It hurts like a bastard and I think it looks like an alien octopus (tripus?) that is digging is bastardy little teeth into my chest.  Meet my CVC:
This post is going to be mostly cursing, venting and one amazing story but I do have some bits of good news, things that made me smile, that I will share as well. Remind me if I forget, k? Cool.

My CVC or subclavian catheter insertion was scheduled for 11am this morning. As with most things in hospitals, even the best hospitals, it was delayed. Usually this kind of delay (an hour before I was called back for prep) would be effing annoying but today, it was a blessing. As P and I were sitting in the waiting room, as far removed from everyone as possible to reduce the risk of infection from the coughing masses, this bubbly, short haired, young woman walks up carrying a big bag with a big fluffy blanket in it. She asked if she could sit with us and then asked if we wanted to talk. Her name is Sarah. Sarah had a carcinoma in her right shoulder that was removed some time ago and found out last week that her cancer has spread. Yesterday, she found out that it is in her lungs, liver and bones. She described her sobs when she found out, chuckling a bit and joking that everyone down the hall must have heard it.  Sarah, asked if P and I were newly married, we said yes, and she shared that she and her husband were just married this past Sunday after deciding to be wed only the day before. She was clearly scared, very nervous and such a bright, bright soul. Sarah is also an elementary school teacher, we shared our diagnosis stories and how we handled our diagnosis with our students. We talked about how shitty is is that we're so young and have cancer. We talked about how scared we were of the CVC insertion and of chemo. We talked about losing our hair and whether or not we had good looking heads.  She told me about the big wedding her church threw for her husband and her and she cried a little talking about it. We met her husband, he was very, very nice. Sarah laughed and smiled all the while clearly scared out of her mind. All I wanted to do was give her a big hug and tell her that I was selfishly so thankful to meet her and that I wanted to give her all the comfort in the world. Sarah and I exchanged emails and cell phone numbers and when she was called back, I texted her to tell her that I knew she would be OK. Sarah texted me at the same time:) Her prognosis is very scary but I will not say bad. No one with the kind of spirit Sarah has could have a "bad" prognosis.  After I had my CVC, we met again in the waiting room (I'll get to why in a moment) and Sarah was in a wheel chair very shaken. Her CVC insertion didn't go so smoothly, they did not knock her out and when they inserted the tub into her vein, it went in the wrong vein and she felt it go up her neck, so it needed to be redone. She had a hard time with the procedure but her mom, whom we met in the waiting room, was there comforting her.  You can tell where Sarah gets her spirit from, her mom was a very nice woman. Sarah is starting a long and difficult road of chemotherapy tomorrow.  Please say prayers, set intention or send good juju her way. She is an amazing young woman and deserves to live a long and healthy life with her new husband.

So, now that I've wept a little writing that, let me tell you about the time I almost told my anesthesiologist to fuck off. Cute, right? Allow me to elaborate.

When MDA called me to confirm my admission date and CVC insertion date, they gave me a choice in how I would like to undergo the CVC procedure and Bone Marrow Biopsy (which I had yesterday, yowza): local anesthetic (just to numb the skin), ativan or similar drug (to make me "not care" but not put me to sleep) and general anesthesia (knock you the fuck out). I informed the kind nurse that I could deal with the BMB with just local anesthetic and pain medication after the fact, but did not need the memory of the CVC procedure thank-you-very-much and to please knock me (the fuck- I did not say this) out. This means that I had my CVC procedure done in an operating room with two nurses, a surgeon and an anesthesiologist. Let me just say that the nurses here are amazing, no two ways about it. They walked me down to the operating room, chatting the whole time about IVF, wigs and scarves and answered all of my questions with big smiles and kinds pats on the hand. The anesthesiologist, didn't catch her name, don't care, arrived to put in an IV in my hand and set up the propofol (yes, the Michael Jackson drug, the same drug I had for IVF). She tries to put in the IV, I instinctively pulled  away and she yanks my hand back and reprimands me a a stern "stop moving!". Then she put my hand on her knee (AWKward) and jams the damn thing in further (uh, inch long needle in the vein in the back of my hand). It still stings (I may or may not have repeated "balls" several times making the proper southern nurse giggle) and I tell her so when she asked and she says "I'll give you more numbing stuff (she used some word, I don't remember what) but I don't know why it still hurts". Um, I don't care why. JUST DO IT. Kthnx. The nurses were exchanging meaningful glances that were NOT lost on me.

SO, I get fully IV-ed and numbed, alcohol swabbed, covered in drapes, have little heart monitor thingy stuck all over me, and oxygen masked aaaaaaaannnnnnnnnddddd we wait. Wait. Wait some more. Waaaaiiiit for the surgeon. Anesthesiologist lady was all miffed about this because she had "been in PEDS all morning and now she has to do this and just doesn't wait to wait". Yeah, sorry for inconveniencing you with your FUCKING JOB lady. Whatevs. All that waiting must have gotten to A-lady's head (I'm sick of typing out anethesiwhatathingy) because she decides to start asking me questions about my nose ring. "Did that hurt", yep. "Where did you get it done?", in a piercing salon in Philadelphia. "Did they clean it first?", uh, yes. "What did they clean it with", I don't know, it smelled like alcohol. "JUST PLAIN ALCOHOL!?", No, it wasn't vodka, I think it was a swab (kind nurse Wendy pipes up and says this for me, go Wendy). Then she says this:

"I don't understand why you can get that done without anesthetic but you can't do this without anesthetic. No one gets knocked out for this. They really don't like to put you under for this, they just don't have enough people to do this for everyone."

UM, excuse-fucking-me? Kind nurse Wendy spoke up right away and says "No, we do this for lots of people, I would do it this way too." I just smiled at A(hole)-lady and said "Well, I got something cool out of getting my nose pierced, and it was my choice, so that's why that was OK. They gave me a choice in whether I wanted to be knocked out for this or not, and I decided that I didn't need the memory of this. I don't think you would either".  You know what lady? This is not the time or place for you to share your opinion on how someone else handles their CANCER. Kindly STFU and die. Asshole.

Then the surgeon finally shows (after a bit more bitching and requests for pages....45 minutes late) and a conversation ensues about when he was pages, how long we've been waiting and then someone noticed that I was still awake. Another A-guy takes over, who was quite nice, and puts me out. Sometime later, I wake up, look down, spot the CVC start crying and apparently told the nurses drunk stories from my TU days. I'm just that awesome apparently.

P wheeled my crying ass over to get my chest x-ray (to be sure they had it in the right vein), helped me get dressed, and then bought me lunch. A big, greasy, junk food lunch (I don't care, it was good, I was sad and weepy and I wanted chick-fil-a. so gross but SO GOOD. healthy/vegan/vegetarian friends, don't judge, you would do the same damn thing). Honestly, I understand the risk of puking your guts up, but making someone wait until 2:30 to eat or drink anything is cruel and unusual punishment.

The chest x-ray came up just fine (an hour and a half later) and we dragged ourselves back to the hotel room. At the moment, I'm laying in bed with a frozen eye mask resting on my neck, over my sweater, above the CVC, P is curled up and sleeping and the pain meds are kicking in.

After all that whiny-ness, here's some good news:) In no particular order:
1) I will be on a special stem cell transplant floor for patients between the ages of 18 and 25. This makes me feel very relieved, it's hard to be the youngest patient around.
2) Dr. de Lima told me that I may be able to have the CVC taken out before returning to Philadelphia
3) My mom is arriving tomorrow:)
4) P and I had a nice diner out at a steakhouse last night called "Taste of Texas" thanks to my generous Grandmother. It felt like an episode of King of the Hill and our waiter was shocked when I ordered the large plate of veggies as a side dish for my steak. Is was like I took the lord's name in vain or something.

Some other random facts:
The nose ring and belly button ring have to come out:( As sad as I am about "losing" those markers of teenage rebellion, I'd rather not get some weird infection and lose half of my nose or something. They can be re-pierced. Meh.

My donor will be making his donation via 100 hole drilled in his pelvis next week. Apparently I will receive my transplant the same day he makes his donation (Still the 27th, his donation date changed) and it will be brought directly to me. My new blood type will be O Neg. Please send some of your prayers, intention or good juju his way. I owe him my life.

There is a yoga practice to be found in all of this. More than anything I have had to rely on my breath these last two days. When someone is poking you with sharp objects, or saying stupid things or you are in pain, even when you are meeting someone whose pain you can just feel, the only thing to turn to is the breath. In. Out. In. Out. Even when taking a chest x-ray, there is a breathing pattern to go to. The breath will float me through this. The memory of my kula will float me through, even when I feel so alone.

I know I say this at the end of nearly every post, but it's worth repeating: Thank you. The text messages, e-mails (the JOKES! oh, J those jokes:) made my freaking morning, thank you), facebook messages and posts and phone calls have a been a much needed connection to home. The last few days have been tough on the homesick front for P and I and we are uplifted every time we hear from you. We love you and miss you and can't wait to get out butts back home:)

Much love!


  1. You are so diesel!

    You get a lot of love from 'round these parts. Hope you feel it :)

  2. yogic breathing reading your posts. they are so real and raw, painful and funny and you continue to blow me away with your amazing self. go you! much much love.

  3. demerol ... that's what i had when my chest catheter was put in ... demerol. i was completely knocked out and don't even think i was given the choice. the only thing i remember was a 'dreamlike' memory of my former boss sitting (floating) in a chair in a library ... similar to the ghostbusters library. how's that for knocking someone out?!?!? that A-lady is a big, big liar! the pain of your cvc will subside and will come in ... dare i say ... handy! no more needles. a world of difference.

    my brother had the same procedure your donor will have. they are the true meaning of heroes. self-less, unbelievable, heroes. i wouldn't want to share my DNA with anyone else. i tell him that all the time!!!

    i will continue to keep you on my mind and in my heart.


  4. Hi Laura, it's Kate I. from HS. Been following your blog and wanted to send you my thoughts and good vibes. You will prevail!

    Although I do not know exactly what you are going through, with my Crohn's I have been through similar emotions and procedures. When I was getting my PICC line inserted (the second time I believe) after being put out I did tell the A-people to fuck off, asked for a beer in CHOP, told them the ceiling was making faces at me, and sang along to Phil Collins. I totally feel how loopy you were following the procedure!

    It's these little moments that you can laugh about through tears and remember that you will go into this and come out of it stronger than anybody. You were given this for whatever reason and the reward will be plentiful. Good luck and be safe! :)

  5. WOW! I agree with Justicia....totally diesel! We are all thinking of you and feeling your diesel energy from there. Love you!!!

  6. You are absolutely amazing! You make me laugh, you make me cry. Your video was perfect. Feel our prayers,Laura!