485. Best. Day. Ever.

Isn’t this collage fantastic?  My brother took the pics on his phone so the angle was slightly different than the one I took:

Is THAT for ME?!?!?

I love the bottom right pic in the collage.  Sheer delight is written all over that child’s face.

Yesterday I was not so delighted with life.  But looking at this picture collage made me smile so I decided to post it.  I have been coughing for a while but ignored it and called it “allergies” or whatever was convenient at the time.  As it started impacting my lifestyle I got a little more concerned – I ate less in the evening (focusing on soft foods) bc swallowing got harder as my body got tireder, carried a little pack of cough drops everywhere, and prayed I wouldn’t cough too much during Training.

As a precaution, however, Coach R obligingly carried my lozenges in his pocket and Trainer D helpfully pointed out the nearest trash cans in case I needed to throw up and the closest Trainer within the vicinity “for backup.”  On Monday, however, I coughed enough for the first time to have to climb out of the AlterG bubble and take refuge in the locker room for a while.  Coach R was working on someone else but heard me cough as I extracted myself and got the full story later.

Oh, no – wait – just remembered that wasn’t the first time. The first time was when I was feeling a tiny bit unwell but decided to bump my speed up by 1/2 mph anyway instead of the baby step approach. That didn’t end well. I tried to sneak out unnoticed but Coach R caught me :/.

So I finally did what I was supposed to do a while ago and went back to my ENT.  This is ENT3 out of  7 (I think).  I have had a lot of ENT’s but I’ve seen him the most – 3x now.  I saw Dr. S when I first became an outpatient.  I was still in a wheelchair and when he asked what brought me in I waved my hand in back of me to where my father was sitting and said airily, Daddy explain.

Ed en route to the ENT

I was in the phase where I was making everyone verbalize what happened so I could verify that their stories matched.  Mommy had done it the day before with my old PCP so now it was Daddy’s turn.

And then after Dr. S looked at my cords and said some stuff about how he didn’t like what was going on and opined that it was partly a lung capacity issue I leaned back into the corner of my wheelchair, looked at him solemnly and said raspily, “If I could run, this would NOT be a problem.”

He looked at me with equal solemnity but with the corner of his mouth turning up in a way that said, We’ve got a live one here, folks!

He then said I was supposed to come back within 3 months but I conveniently “forgot” for the next 18.  Oops, My bad.

Well, I’m running now (with the help of highly trained professionals and a fancy machine) but I’m still having some issues.  I dragged my feet on making the appointment even though I was supposed to go for a checkup within a month bc I hated the idea of being the initiator.  I knew that if I showed up because of a specific concern I couldn’t do my Coach R impression – the one where I speak with utter finality and insist that I’m so much better we should dispense with these formalities and everyone should keep his hands to himself.

So I decided to signal to the market in another way.  I clutched Ed Blueberry pathetically in my lap (this was not a studied move, I just held on to Ed bc I wanted to) and after Dr. S numbed me up but before he brought the spaghetti noodle camera out I was like, So there’s no other way to do this, huh?

ENT3:  No, there’s no other way to asses the vocal cords other than to look at them.

Me:  Ok, fine.  Just checking.

So he took a look for what seemed like a very long time, but  really he was extremely nice and careful.  But this did not prevent me from edging away from him in the chair (he had to tell me to come back a couple times), and as my discomfort grew I remembered how awful it is to not be able to breathe, which did not help me remain calm, and the tears started to squeeze out of the corners of my eyes.

Happily, I did not throw up or cough, although we had discussed contingency plans if this did occur, and there was a little gagging.  The verdict is that whatever is going on with my cords doesn’t look any worse (YAY), he thinks it’s drug-related ( Double YAY – this is an easy fix; I had already discussed the possibility with my doc), oand the best news of all – I just bought myself an entire YEAR of freedom before my next check up (WOO HOO!!)

See?  The running thing totally worked.

Now the only thing I have to do is go see my PCP on Thursday bc I’ve been having some abnormal head pain.  Mommy thinks it was ENT-stress-related.  Maybe it was, but I’m just trying to cover my bases here.  I remain assured that these things that crop up are just annoying, not a sign of imminent mortal danger, but I just want to be looked at anyway.  I told Coach R, If all goes well, I will have seen 4 docs before I see you again on Thursday. (I saw him Monday.)

Right now I’m waiting for my Ensure to solidify in the freezer enough for me to Vitamix it up into an Ensure Frosty.  I kid you not – I’m getting good at making Ensure into yummy things.  But I already had ice cream today.  After I cried at the ENT Mommy took me and Eddie out for fro yo!!

 

Green Tea Gelato Fro Yo – this made it all worth it

444. Status Update: Vocal Health

Last Wednesday I did my duty and presented myself to the ENT so she could look at my vocal cords. Gen has already put me on notice that she will be all up in my grill regarding this matter, and we were happily reunited last week, so I figured I’d better get this thing over with.

At the last minute Daddy came downstairs and said he was going to drive me bc it had started to precipitate. I was glad bc midway to Kaiser it started to snow hard. We almost had an issue, though, when Daddy dropped me off and told me to leave Ed Blueberry in the car. [GASP!] I was like, Oh, no, Daddy – that’s not how this works.

Once he saw the fear in my eyes he let me take Ed and met me upstairs after parking. I had emailed K (ST) about my appointment since she has been at my last three exams and I was wondering if she’d want to see this one, too, But, I posited, It’s gonna be really boring bc there ain’t nothin’ to see.

She said she was going to be on vacation, anyway, but shot back, There BETTER be nothin’ to see!!

Even though I did my very best authoritative Coach R impression and explained to my new doctor (she is ENT #8, including the Doc in Oregon who was present for my craniotomy even though I didn’t technically “meet” him) that I am very well indeed and we should dispense with the formalities and I no longer need to be monitored, apparently there is still something worth looking at down my throat. She opines that it’s not a nodule, it looks more like a cyst to her, and cysts don’t go away.

Remember how I said in my Thanksgiving Update that no one’s talking about surgical intervention anymore? Well, I was wrong – she talked about it. But happily, it’s an entirely elective surgery since my voice is a quality of life thing. I’m happy with my voice as it is right now, so there is no reason for me to ask anyone to get in there and cut that thing out.

I’ve had lots of feedback, especially since ORFR began in earnest and I went to Oregon, that I’m using my voice completely differently. I carry myself and breathe so much better – I can feel it. Even the receptionist who checked me in said my voice has come a long way. (Side note: not the topic but she was wearing a fabulous pair of tall leopard rain boots.)

So we settled on, okay, I’ll keep being monitored. So I just have to go back in 6-8 months.

As proof that I’m getting better, though, and that all this Training has a serious end-goal, I’m speaking at the Ladies’ Christmas Tea on Saturday December 6. I’m super excited since although I’ve spoken in a few other contexts this is the first opportunity I’ve had to address the home crowd since 2 weeks before my injury. I had just gotten home from Africa and Aunty K asked me to speak at a Ladies Meeting. The better I get the more I understand that most people (many of whom know my very well) have been extremely concerned about how this situation has impacted me spiritually. So this is my chance to set the record straight.

385. Sales Pitch

Ezra Sept 2010 – Clearly I believe anything he says and will buy anything he is selling.

I had my checkup with the ENT and K, my Speech Therapist, last week. I went to the appointment prepared with my sales pitch. I greased the wheel by telling K that I had gotten recent feedback from multiple parties that my voice has improved greatly. I said I’m doing well with my breathing and that I’m using my core and stuff. And then I posited that I am SO much better they should just take my word for it and we should dispense with the formalities and no one should need to look at my cords going forward (subtext: everyone please keep your hands to yourself).

315. You Take What You Need

The tenor of my pitch made them laugh but the substance was not received favorably. My ENT said I should come back in 6 months. Incidentally, this is the 7^th ENT I’ve worked with, counting the one who was present at my craniotomy although I technically did not meet him. When my insurance changed I had to get new folks, there was some referral action prior to that bc of the surgical intervention possibility, and then my ENTs kept on moving and I had to get new ones. Happily, K has been present at my last 3 checkups so she’s seen the progress. I got a good report this time. When she first saw me (Fall 2013) she couldn’t even see my vocal cords bc the muscles around them were working so hard to compensate for the weakness and the nodule that keeps them from closing entirely like they should. Now my tension is better, I’ve still got a little weakness, and the nodule is still there, but it’s smaller now. YAY!

Although they did not support my “no more monitoring” proposal I was happy to get a more relaxed schedule – 2x a year. Of course I would have been absolutely thrilled if they said they really would take my word for it, but I guess that was slightly unrealistic. Even though I know how to pitch my health history has undermined my credibility in a way –I might be selling the idea that I am fine but my medical resume generally gives people the feeling that they should monitor me appropriately despite my verbal bluster.

My sales pitch skills have met with a more favorable reception in other, less medical, parts of RecoveryLand. Even though I’ve been the one to be seeking services I know I have to establish the context and the notion that I am strong and healthy enough to be brought to the next level of Recovery.

When I first hit on the idea of getting a Personal Trainer I set “Rehab/Physical Therapy experience” as my top criterion. During my interview at The Gym I asked if there were people willing and able to take a case like mine on given that I’ve been medically cleared to exercise. Trainer D was in that meeting and indicated that yes, there was neuro experience on staff and he’d choose someone appropriate for me. It took an hour (my first session) for him to decide that he would train me, and for me to be happy with that choice. Although he does not have neuro experience he has plenty of PT experience as a patient and lots of weird brain “fun fact” knowledge bc he is admittedly nerdy like that. He is also furthering his education in related topics, so this works out great for me. Most importantly, though, is that we laugh a lot and get stuff done, too. (Side note: I doubt this would have worked prior to my injury.) This is a prime example of how personality fit trumps specificity of training.

352. Ed Says, “Well, that backfired, didn’t it?”

The situation at the Running Gym was slightly more nuanced (it’s also the type of environment I’m more accustomed to – I went there bc Trainer D’s overwhelming enthusiasm for ORFR unnerved me so I diversified my trust portfolio). I went there specifically to use the AlterG but I found that I had to get past Coach R to do so. I was then faced with the choice to use the AlterG or use the AlterG and work with Coach R. My attitude was kind of like, This is going to happen with or without you…and my gut tells me it should probably be “with.” I made my pitch about how I have the opportunity to get better and need people to help me push the envelope in a safe way – what was the best way to go about this? This was Coach R’s cue to make a reciprocal pitch, but he did not. Speaking definitively and without room for debate he observed, “Well…if you wanna do this right….”

Bahahahaha!! And the rest is history. I get the feeling that Coach R doesn’t pitch in general – it’s not in his repertoire. The way he said it was extremely matter of fact. He doesn’t have a bossy bone in him, which is good bc I have enough for both of us. Based on our interaction (which totaled <45 minutes at this point and included his refusal to demonstrate a squat for me and the eyes-only diagnosis of my atrophy) I accepted his opinion as authoritative. PS. When I came home from Ai Ai’s I immediately upped my Running Gym time to twice a week. I’d be there more if it were closer to home. I asked R to move the practice and get a set of parallel bars and he said he’d get right on that.

I tried to channel my inner Coach R and made my best attempt to speak with compelling finality last week but K and my ENT still insisted on looking down my throat anyway. But even if my pitch ultimately fell flat I’m glad I could make it and had material improvement to report.

 

 

283. Praise Report

I have a praise report.  (A “Praise Report” is how one labels and shares a favorable answer to prayer.)  My PR:  Remember how I went to the ENT last week?  My weak vocal cord is all better.  There has been progress over the past few months.  As I saw different ENT’s they all told me what they saw.

1. Dr. S – June – “One of your vocal cords (the one without the nodule) is weak.”
2. Dr. N – August – “One of your cords is a little weak.”
3. Dr. G – October – “I don’t see it.”

And believe me when I tell you that Dr. G looked thoroughly at my cords.  She used both the flexible nose/throat scope and the rigid throat-only scope.  This is what the rigid scope looks like:

She sprayed me with some numbing stuff that purportedly “tastes like cherries.”  Mmm hmm.  I was familiar with the process since I saw Tanpo do it last year when we came to get his final biopsy results (he was all clear).  I was thrilled to hear that Dr. G did not see the weakness that had been obvious to others.  It made sense to me because the right side of my face (the weaker side) has been feeling really good lately – I still grin lopsidedly if you make me laugh, but my right side has become more mobile.  I can tell it feels different than it did a couple of months ago.  It feels like it did when I was well – I forgot what that was like.

My lopsided grin when it was worse – riding the chair lift at VT June ’12

Dr. G knew I was Tanpo’s daughter so when she met me as her patient she had my paternal context.  My health history was as brief as I could make it, and I guess it’s not to often that patients come in, demanding to be scoped.  So she took a good look at my cords and I got to meet K, the ST, who also treated Dad.

I had my first ST session today and happily, there was no nectar (thickened liquid for practicing swallowing) – I got to drink regular juice, and I ate some things, too (Dorito girl rides again!).  She said my swallowing looks quite strong, although it took her 2 seconds to ascertain that one side of my mouth is still weaker (she looked in with a flashlight), and I got some handy non-aspiration techniques to try out.  We then practiced some familiar vocal exercises, but I didn’t do so great (understatement), so K very kindly gave me a non-vocal home exercise to strengthen whatever needs to be strengthened.  She’ll evaluate my voice next time, and we’ll work on techniques to get me to use my voice differently (goal = make the nodule better).  

So it’s been an eventful couple of weeks for me.  I got the opinion I was hoping for from Dr. G (no surgery now), although I will get re-checked in a few months, and I’ve gone back to ST.  The picture up top is of me getting scoped.  Notice anything?  Other than my amazingly white ankles?  I’m not wearing any weights, or a brace!  I’m even wearing itty bitty ankle socks, whereas I’ve been most comfortable for the past 2 years when my ankle and leg are covered to the max (covering = padding in case of a fall etc.)  I got out of the habit of wearing all my ankle stuff this summer, and then one day I wore them all upstairs, and none of it made it back down after nap time.  I’m doing well without them, so that’s progress!  Although last week my left ankle started going all crazy while I was walking outside with Tanpo, so I still need to be careful and exercise it.  But I’m grateful for the progress so far – not wanting to wear my brace/weights is a good thing in terms of my recovery.  It’s like my vocal cords – there is still work to be done, but I’ve seen signs of improvement.  So please join me in giving thanks for this.

235. “Come with us!”

Before I get to “Come With Us!” I’m going to tell you about my visit to GUH yesterday.  Driving there was weird since I haven’t taken that road since 2009.  We ended up getting confused by the Reservoir and turning left on Q , left on 44^th, and right onto Reservoir.  E (&S) used to live here while she was getting her graduate degree from the School of Foreign Service and I remembered how the streets worked.  I also used to live on P Street (my Junior year) with a bunch of crazy med students (Hi, guys!! Xoxo) and a couple of other fun girls, so 44^th was familiar.  I couldn’t believe how easily I used to trek the 1.7 miles from our P street house to school.  V and I used to eat ice cream bars on the way home.  N once refused to walk under my sun umbrella bc it looked so nerdy.  I was like, It’s cooler in the shade.  I’m carrying this umbrella.

Overall the consultation was a good one.  My doctor was super nice and it was good to get another perspective.  I made a collage to commemorate the visit.  I didn’t even ask Mommy if Ed could make a public appearance.  I just tucked him under my purse strap and got out of the car.  I could see people smiling at him on the way in.  You can see in the pictures that I was rubbing my nose (this was after the numbing spray went in), and during the actual scoping I was barely holding on.  Good thing he was quick about it.  So the recommendation is to hold off on surgery for now, and to see if my issues can be helped by speech therapy first.  I was in ST for ~1.5 mo as an inpatient and ~5 mo. As an outpatient, but it was more for general recovery – this would be targeted treatment for how I use my voice.  He explained that surgery also increases the risk of scarring, which would not be good.  Even if they did operate they’d do one thing first since my bump is on one cord, but the weakness is on the other – and apparently ENT’s don’t look favorably on operating on both sides at once (makes sense since more stuff could get messed up).  And judging by the state of my stoma (the hole in my neck), I might be a prolific producer of scar tissue – but that’s just me reflecting, not anyone’s professional opinion.

So for now I’m going to bide my time, wait for my insurance to change (I’ve been approved for Medicare in October), go see CMD and M (37), and we’ll take it from there.   Thanks for praying!  Now, on to business…

Come with us!

During my Last Hurrah trip to Singapore and Malaysia in 2009 we got to see many dear friends and family members.  One “Uncle” faithfully chauffeured us around my parents’ hometown, to restaurants, church, and a particularly memorable laksa feast prepared by “Aunty” at home.   One day Tanpo thanked him for picking us up (again) and Uncle asked, Do you know why I do this?  Daddy had no earthly idea.

Then Uncle told us that when Tanpo was a teenager and Uncle himself was a very young teen he remembered seeing the young people at church hanging out together and making plans to go eat (predictably) somewhere.  Uncle would hang back a little, wanting to join the group, but naturally shy about it.  My Daddy saw him and said, Come with us!  And Uncle has always remembered that and has taken such good care of us when we go visit since he was grateful that Tanpo looked out for him way back when.

Those words actually cost my Dad very little – and he had no recollection of ever doing such a thing.  But being included was a Big Deal for a younger person.  It makes me think of my friend A who has recently moved back to our area with her hubby, D (who took my book cover pics for me), and their little girl.  When we were growing up if there was a visitor at church I could just look at A if I was already engaged in conversation, raise my eyebrows a little in the direction of the newcomer and she’d run off to talk to him/her and make them feel welcome.

These days I’m often the one on the periphery – my mobility issues often make it easier to just sit quietly rather than be social with another person or a group, but I’m quite content to rest and I don’t mind being alone at all.  Other folks find it more painful, so if I was part of a core group of socializers I’d always like to look out for folks on the fringe to see if they wanted to join in.  It was quite possible that perhaps we were too rowdy – I didn’t assume people wanted to hang out with us, I just wanted them to have options.  And when I was new myself I found ways to insert myself into the current of what was going on.  It’s always nice to be invited, though, even if you exercise your right of refusal – the friendly words, “Come with us!” are always welcome.

This is one of my favorite A stories:

41. One Leg at a Time

 

 

Ed had a great time at the ENT’s office…

Ed in the waiting room.

…but I didn’t enjoy it quite as much.  My ENT/PDG is very nice and all and told me it was okay when I told him I knew I was supposed to go back and see him over a year and a half ago, but I never did because I don’t like being poked.  I was right to be wary of the scoping.  Mommy told me she head me whimpering while he was looking around.  Evidently there was something worth looking at since the scoping took longer than I had anticipated, I had to make lots of different noises (I considered it a bad sign that the only noises I could produce were at least a full octave lower than my doctor’s), and he kept on moving the camera thing around to look at different angles.  It was gross, and my greater usage of my left eye (thanks, VT!) let me see the scope being pulled out of my nose and I couldn’t suppress a “yuck.”  I immediately apologized for being a sissy, but my PDG was cool.  Then he told me the cyst is still there, plus the right vocal cord looks weak, so I’ll need surgery.  He gave me a referral to a vocal surgeon and I’ll  book an appointment with him.   My next question was, “What’s the urgency on this?”  YAY!  It’s not like this needs to be taken care of tomorrow.  I’m going to enjoy my Summer Vacay as planned :).

Thank you for your prayers and well wishes for this appointment.  I know some of you, including Tanpo, get scoped regularly and face up to it as part of your healthful duty.  Good for you!  I’m  not as brave about this kind of thing.  A few weeks ago Mommy and I were in the car and I go, “Hey, Mommy – can you believe I had brain surgery?”  We both laughed – because it sounds ludicrous.  Well, the thing is that I was asleep for such a long time after the surgery, it really didn’t hurt!  The pain I felt was not in my head – it was in other parts of my body.  Sure, there were lots of symptoms to get used to, but I’m so thankful I had no notion that anything had happened inside my skull.

The fact that it’s been 2 years since my injury and I’m all kinds of cognizant made me more anxious about today’s appointment.  I had no idea there had been an ENT at my surgery.  The first time I got scoped was when I was still an inpatient at RIO – I looked at the trees rustling in the wind outside the window, utterly convinced that none of this was real, and planned to ask a nurse to get someone to wheel me back to my room if I got bored.  The second time I got scoped I was home (July ’11) but still incredulous.  When the PDG asked, So what brings you in today? I just waved my hand in Tanpo’s direction and said, Daddy explain – because I was still intent on hearing different people explain the situation to see if their stories matched, and it was Tanpo’s turn.  This time, though, I knew what was going to happen and I was right – it was yucky.  Admittedly, though, I’m a wuss.  Yuckiness might be the worst of it – plus I’m more conscious of my gag reflex now, but with an ENT standing right there I knew I would be okay –  I was just grossed out.

P suggested that I  consume ice cream after my appointment to celebrate getting this done.  I love that idea and think I might enjoy some chocolate “fro yo”  I made later (frozen bananas, Greek yogurt, cocoa and PB2).  But right after the appointment Mommy and I had some lunch and I enjoyed this treat instead:

P.S. Ed just wants to add…

108. Don’t be a crybaby today, okay?

 

183. Flight Phase

Special thanks to the lovely family who obliged me by taking on a feat of coordination/wrangling and snapping the above picture.

I saw M (37) for the first time in a while when I returned to PT last week (remember, my insurance was up for renewal). Happily, she noted that my gait is getting better and we traipsed around outside the hospital for like AN HOUR. There was all sorts of uneven terrain, lack of sidewalks, and crossing of streets. Okay, I did get to hold M’s hand once, and maybe it was like 45 or 50 minutes, but still. Straight up cray cray, that one. Heh heh. Just kidding <3, I’m just being facetious.

We “ran” to the front door and I noted how funny it is that I’m super compliant and do whatever she says and running/loping along in front of the customers at R’s coffee cart is business-as-usual for us. M noted that my running looks better, too, which I was very pleased to hear. Before my mini vacay I asked if I could walk around the house without Leo the Cane, and I think it’s helping. At a certain point you spend more time looking for the cane than using it, so it’s really nice to be able to give Leo a “staycation.” I like to use him in public, though, as it’s a good visual cue for people to give me a little wiggle room and to watch out lest I fall on them or just to remember not to jostle me. (Side note: Jostling was bad in my old life, too – hence my aversion to crowded amusement parks or shopping at Tysons I on Saturday morning.)

Also, Tanpo has been practicing his own version of Physical Therapy by marching me around our driveway and putting me in charge of our garbage and recycling bins. When you’re rolling them along, they’re like a walker, he insists. I think this exercise must be helping, too. When I’m not pushing the garbage can Tanpo won’t hold my hand, either. I’m supposed to be practicing my balance and walking in real life skills. He’s quite hardcore and M supports his methods – it seems to me that they’re on the same wavelength – it’s just that M’s credibility comes from those letters after her name and the schooling she made it through to get into this profession. Tanpo also has letters (lots of them, actually) after his name, but he gets to tell me what to do bc he’s my dad. That’s how this gig works. I know the drill.

Anyway, back to the running improvement. It seems that I now actually get off the ground (briefly) now. The period when you’re switching from one foot to another and both feet are in the air is called the “flight phase” and I have one. I thought things felt a little different. We’ll see if it sticks around this week.

Even if I’m airborne for a fraction of a second, I’ll take it. The last time I was airborne (and not at PT, wearing a gait belt) was when we went to Tanpo’s PDG to get the finalized results of the biopsy from when he had surgery in Oct ’12 to remove the growth from his vocal cord. We learned it was officially benign and so I gave myself permission to celebrate. We were walking out to the elevator and I told Mommy I was so happy I was going to jump up and down. I positioned myself in the corner with Leo, Mommy stood close by, and I jumped up and down in celebration very gingerly. Even then, I think I only jumped once. After gaining minimal air, coming back to earth was so jarring I felt that was enough excitement for that afternoon. So we got into the elevator and went home.

Given Tanpo’s cancer in 2003 (in the nose/throat area) the final report opined that last Fall’s growth was likely a consequence of the cancer treatment and that’s also why his ENT (who impressed me with her beautiful earrings and hair peeking out from her surgery cap – I know Dr. SJ would agree – there’s no reason why you can’t operate and look good, too.), is continuing to monitor his vocal cord etc. health. It appears that this is an ongoing concern to be monitored kind of thing, and so the flight phase of the benign biopsy happiness is just that – a phase. Being airborne and carefree forever isn’t the nature of this situation. But it’s a perfect scenario for Divinely imposed peace.

Now it’s my turn to go to the PDG. This visit is probably over a year and a half overdue, but of course, I have been busy avoiding my PDG like the plague since I do not like being poked. (Side note: remember I told you that being an ENT really is an honorable profession – it’s just that I’m squeamish about these things. Also, I call my ENT the “PDG” but don’t let my cheeky nickname fool you – he’s well credentialed and highly recommended.) The purpose of this visit is to get scoped again. When I was at RIO (3^rd Hospital) and when I first came home my ENT’s saw a little nodule on one of my cords and they both said it could’ve been there forever, or it surfaced after tubes were stuck down my throat before they put in a trach and a PEG (feeding tube), but it was okay – they weren’t going to intervene or anything. So I’m going to go to my PDG on Wednesday and see what happens – it would be great if my nodule has disappeared. I’ll keep you posted. Hey, Mommy, Ed is coming with us, okay? He will be on his best behavior xoxo.

“That girl is straight up cray cray.”

115. How to Fight the Good Fight