Pickin' It Back Up

Well I havn't really been keeping up with the heaping health mishaps of the past 9 months. I guess partly due to the fact nothing too serious has happened, and mostly to due to the fact I can't find my usual humor in what has happened. And since humor has been a big coping device AND literary device, I felt I needed to wait until some laughs could come this cluster of crap that is my brain.

Since getting a 2nd VP shunt put in a year ago, I have done some pretty awesome things like (1) took our first family road trip to Ohio to visit out dear friends the Ryans (2) Kyle and I pretended we were young enough to handle the music festival culture and drove to Gutherie, Oklahoma with friends to camp and see Mumford and Sons. Being in our mid thirties it took three or four days to recover from that two camping trip. (3) I dove back into the classroom with a 6 week, 6th grade long term sub position. It felt great to have "my" own class again, but the experience highlighted the short-term memory loss I had suffered and I hadn't known it.(4) We were able to take the whole family to San  Antonio Texas which was going Moe, Franki, and Henry's first plane trip and SeaWorld trip. Taking my animal-loving kids to SeaWorld will be a highlight of not only this year, but the entirety of my motherhood, lots of "ooos" and "awwws."

However, keeping with my health and klutzy past, I was going through a battery of doctors, specialists, and tests to still figure out a source of the headaches I was still having, some headaches lasting up to 7 days. In a good ol' fashion method, a Top Ten organization seems to be the best way to present my newest mishaps that include:

1. The Oak Tree Farm Zombie: How a nighttime jog led to a fractured collarbone and a bloody face and leg. BUT I SAVED THE HEAD!
2. A Fall rose bush dead heading session led to thorns in my scalp.
3. Forgetting my kids at school: a ditty about unknown short term memory loss.
4. A routine neurologist appointment about a migraines leading to DEFCON 4 emergency tests and procedures and the panic that ensued!
5. The 18th lumbar puncture gone wrong and the calm husband who turned ASSHOLE on an ER doctor.
6. Firing a neurologist. As a patient you can do that...so  liberating!
7. The cabinet door/bunk bed combo can be another enemy for one's head.
8. A trip to a Nuero Ophthalmologist-How my diagnosis could possibly change for the 3rd time.
9. An ice pick to the head: The accusation that I am compromising my shunt on purpose (still trying to find humor in this one).
10. A decision to make: keep the VP Shunt and ask for it out? 

A Fan Letter to Andy Cohen

Nope, I have never ever sent a fan letter to anyone; not even my teenage musical love Boyz II Men. Today I did it! However, it wasn't to a singer, actor, or sports image. It was to the affable BRAVO TV executive Andy Cohen, who I have NOTHING in common with except being from Missouri. However he absolutely cracks my shit up with his memoir Most Talkative and his nightly show Watch What Happens Live. Where I literally just watched him try to pair up the NKOTB member to a crouch shot in an On Air game. Most importantly, he is the creator of the very prestigious TV series The Real Housewives of ---------. Andy's smile reminds life is just too short not to laugh and have fun with your surroundings. So here is my first attempt at written adoration (now I do realize he may never get my email or letter):



Andy,

 

I wanted to say thank you for your candor and humor on air and mostly in your book. This Kansas City mom has had a series of unfortunate events the past 3 years. 2 bouts of meningitis, 4 brain surgeries, and a slew of hospital visits have kept me from trolling Target and texting in the school pick-line with other "at home" moms. However, I have been able to adopt a Cohensque comical and sometimes inappropriate view of the whole ordeal. My funny and crass rose-colored glasses were influenced by Most Talkative and how you handled your own life struggles, which have zero relationship to my Catholic, vanilla, and Midwestern problems. You dealt with your sexuality; I dealt with a colorful neurosurgeon who I believe has severe ADHD. You dealt with prejudice; I dealt with shunts (yeah...inappropriate word huh?) You dealt with a Jew fro; I dealt with an unruly patch of shaved hair I named Walter. My odd story propelled me to create an immaturely prepared blog where I could share my improper thoughts (http://clusterofcrap.blogspot.com). And this outlet has been my biggest deterrent from depression; I can't afford a new face like Vicki. Thank you for being transparent and yourself and letting the world love you for who you are! I have gleaned so much from your public narrative!

 

Now I know you said there will never be a RHoSTL(or KC) because Midwestern women are not cray-cray like those in OC or ATL. However, if you want a wholesome Missourian to be a bartender in the clubhouse one night, I will happily ditch my addiction to Old Navy clothes and go get a fancy dress at Macy's ;)

 

Thanks,

April Farmer

9 Day Check Up

Since there is really no cohesive writing format to describe my visits to Dr. Basta's office, I will use the trusted Top Ten approach:

1. During surgery, he puts my head in a three-pronged vice grip. This vice grip puts 60 pounds of pressure on a patient's head (from three angles). Medicine is given to an already unconscious patient to minimize blood pressure spikes when those three prongs CLAMP the head. "Thank God you are under anesthesia" Basta reassured me after saying he wouldn't ever want his head in this contraption.

2. I had over 25 staples plucked from my head, neck, chest, and stomach. Dr. Basta made his nurse do this sadistic task as we heard him laughing in the next exam room. While Lisa was plucking me like a dead chicken, she noted that I had completely ripped two staples out of my scalp and two other staples were only half way in. I then had to fess up to a fight I had with an over-the-head hoodie. I guess the hoodie won. Remember I am numb on my scalp, so I don't feel those mishaps. Now, my tummy staples are a different story, and ironically they stayed neatly intact =)

3. He uses a GPS system to find my ventricle (brain hole) to put the proximal end of the catheter in. I had white radioactive stickers put on my head, then they sent me into a CT Scan. The CT Scan and stickers created a GPS reading for Basta to know where to drill my skull hole. Fascinating...huh?

If you look above my right eye, you can see a scabbed over "hole" from the vice grip.



4. Apparently the Kansas City Public Schools are ranked dead last in a supposed all country ranking poll. When furthered questioned, Basta couldn't recall his source. The district is bad, but it is hard to believe they are the WORST district in all of the US.

5. At his kids' preschool they auction off the closest parking spot. This year it went for $2700. Yep, he lives in Mission Hills, KS.

6. I am healing very well, but still have to take it easy for 8 more weeks. Apparently I am not supposed to be lifting anything heavier than a gallon of milk. It would have been more helpful to tell me that right after surgery. So neither Henry nor an overstuffed footstool get to be carried anymore.

7. I need to get a visual field test done at the eye doctor to see if my peripheral vision is improving. It improved with the last shunt, so the prediction is that is will improve with this one.

8. Lisa, his nurse, has had 11 surgeries on her ear. I immediately stopped complaining about my 4 surgeries.

9. My overall diagnosis has changed. It was once IIH (Idiopathic Intercrainal Hypertension) and now it is Acquired Hydrocephalus. I acquired it from my first bout of viral meningitis almost three years ago. I was told this was actually a good switch for my medical future because other doctors know about  Hydrocephalus and how to treat it, unlike IIH.

10. I was always scared that I was "that patient." You know, that hypochondriac patient that calls ALL THE TIME. Nope, I was reassured that when we call, Lisa knows there is something legit going on. I kinda feel proud of that because that means I can read what my body is saying and get help when it needs it. They have patients that call because the patient is lonely and just wants to talk. One patient apparently called and said her husband was beating her. So believe it or not I am a low drama case. 


Overall I am doing very well. I have a virus or something right now, but I am sure that will be short lived. Once again we appreciate all the comments, visits, and prayers. And the food! My goodness the food. We have been blessed with friends, neighbors, and family who keep our bellies very full with healthy food. For the first time in weeks, my kids ate a Happy Meal Saturday as a simple reward for good behavior, not because their parents were too worn out to cook. Thank you so much!

Your Effin' Bladder

Everything in the surgery went as expected. This was my first morning surgery, and I may only schedule morning surgeries from now on. Pre-op nurses are more chipper, you don't have to starve all day, and you go "under" near the scheduled surgery time. I spent 4 hours in recovery where I listened in on a lot of other patient's stories. The pain killer they give me right out of surgery takes the pain away, but does not let me sleep like most people. The gal next me had a hip replaced and was hallucinating on her painkillers. She kept calling our female nurse Ted. That's the kind of pain killer I want!!!!

And I am not sure, but I think the gentleman across the aisle was knocking on death's door. He left Recovery to go back into surgery...maybe? It's not as if I could really see these people, so I had to infer a lot. For some reason, I inferred death. Morbid much?

My post op nurse was very diligent, but not too talkative, so I asked if Kyle could come back and entertain me. Nope! Recovery was too crowded (and full of inferred death) to have extra patrons around (one draw back of a normally timed surgery).

I even got back to my room before dark, so I chit chatted with my parents for a bit. I had insisted that Kyle not spend the night with me, but luckily he didn't listen and ordered a cot for the room. Needless to say, we knew the routine at Research Medical Center since this was my 4th surgery in 15 months. I even fell asleep for the presumable night by 10pm. We were tucked all in and then my bladder started screaming.

Kyle dutifully helped me sit up (which was challenging being I had a head, neck, chest, and stomach incision) and roll my IV into the bathroom. Nothing came out. So we wheeled back to the bed. 5 minuets later came, I could not take it any longer and had to try again. Kyle, again with a smile on his face, rolled me to the bathroom. Nothing! This was our pattern every 10-20 min throughout the ENTIRE night. Yes, the ENTIRE night. The only difference was Kyle's smile transitioned into a grin, then to smirk, then a frown, and finally a "you have got to be kidding me" scowl. I am not sure how he didn't just say "NO, April...you can't pee...deal with it."

Around 6 am, I finally asked Estella, my very efficient Jamaican nurse, if there was something wrong with me. She retrieved a machine (a Doppler...I think) that was able to measure the amount of liquid in my bladder. Who knew such a machine existed? My instincts were right, it was full. I guess with the previously removed catheter and general anesthesia, things slow down in the pee area. I finally had some success later that morning, but poor Kyle was too tired to celebrate with me. His loyalty was solidified that night with all the fruitless trips to the bathroom. Of course, that's what he gets for waking me up with his snoring for the last 9 years. Payback is a bitch, Farmer!



The Cleaning Monster

It has been a little over 2 weeks since I got a call on a Thursday saying my new VP shunt would be placed in three days on the following Monday. With my last placement, I had about 4 weeks to plan, but this time...3 days. When his nurse called and said Monday I giggled and asked her "you mean in 3 days?" She earnestly said yes. Two reasons why the plumbing had to be installed quickly (1) damage to my peripheral vision was already happening and (2) I needed to be completely healed in time for the kids to be out of school. He said I needed 8 full weeks to heal, so time was running out.

From that call on I was possessed with the nesting monster that often occurs in late stage pregnancy. And Kyle was completely helpless against this cleaning bitch; he was to do whatever the bitch said and God forbid he try to sit down to rest. Meals were prepared, "sub plans" for the kids were made, and Henry's early birthday and scrapbook were completed.

The mad-person cleaning is what bothered Kyle the most. He thought I should be resting, but I reassured him that I would have plenty of time to rest. I carried a plastic bucket supplied with Oxy Clean, Pledge, Windex, Scrubbing Bubbles, and rags. I scoured showers, floorboards, windows, counters, cabinets, absolutely everything. Kyle did not know how to handle this because I had never cleaned like this before (except in a freak moment three hours before my water broke with Moe). However he sensed that if he made me stopped, I would be flooded with overwhelming thoughts and my anxiety would get the best of me. All he could do was count down the days until I was immobilized and live with the smell of bleach pouring out of the bathrooms.

 

 

In my warped mind I was thinking EVERYTHING had to be perfect for the grandparents to take over the household even though they didn't need the floorboards sparkling. But the crazy cleaning kept me from losing my mind. Oh yeah, all three kids managed to get sick in those three days too, so stress was high. From my last placement I was expecting to be in the hospital for 4 days, missing Henry's real birthday, Franki and Moe's Grandparent's Day, Mystery Reader, and all the other activities that happen in a week. This house was going to be clean, and I wasn't going to let the fact that my nostrils were suffering chemical burn from the cleaning supplies stand in my way!

Walter Is Getting a Little Sister

It has been three months since we extracted a plumbing system from my infected brain. Since then Walter has sprouted from his shaving, my incision has healed, and my CSF flows uninfected. However,  my brain DID NOT teach itself how to properly drain itself. After an extensive eye exam and another lumbar puncture it is apparent my intercrainal pressure is high again. In a predictable world the brain did not disappoint.

Walter peeking out. He is under control now.

Up to this point I had a few MAJOR headaches, and I was able to knock myself out with the wonders of Oxycodeine and Zofran (an anti nausea drug). This cocktail has always done me well and I keep Kyle extremely aware of my Oxy usage as I could easily become addicted to the euphoria it offers; please no judgment here. Also a familiar whooshing sound had reappeared in my ear. This symptom doesn't really bother me until I am ready to lay down and go to sleep. Then this whooshing I had been ignoring all day sounds like I am in the middle of a tidal wave. And there really isn't any way to rid my ear of the loud splashing sound but to turn on the TV and focus on a dumb sitcom like 30 Rock or Parks and Rec. So yes, I have to have the TV on to sleep and I know "they" say that isn't good for your sleep patterns. So with the help of a class II narcotic and bad sleep habits, I was makin' it! I managed to start substitute teaching, attend and stay awake for a 24 hour Oscars movie marathon, and dance so vivaciously at a wedding that I was unable to walk down stairs the next   day.                                                                                      

 

 My possible drug-induced euphoria was cracked Tuesday when I went to an appointment with my colorful neurosurgeon to look through some results and discuss the next step. I had to drive to Research Medical Center because I would vomit if I hadn't (motion sickness: another sure sign that something is not right up there). Dr. Basta quickly caught us in the waiting room before my appointment to ask if I was feeling "crappy" yet. He asked in kind of an ironic tone, but he was jolly. I knew he hadn't looked at my eye exam or LP results yet because when he came into the exam room, he seriously asked to look at my most recent incision. There was no talk of provocative magazine covers or kids' preschool dramas. I unleashed Walter and he quickly glanced at the incision and immediately said "I don't feel comfortable going in on the right side." At that point I can't remember if Kyle or I said "So does that mean another shunt?" Probably the rest of the appointment reads like a sitcom script:

BASTA

I can't make you do anything you don't want to do. I can just suggest treatments. 

BEFUDDLED PATIENT

Well I want to do what is best for my health and my eyesight.

BASTA

I can't guarantee that your headaches and eyesight will stabilize. We know that your optic nerve is swollen and you have two blind spots AND most importantly that the shunt gave you a lot of relief last year.

BEFUDDLED PATIENT'S HUSBAND

Umm...ok. Why the left side? So she would have to shave her OTHER side? [awkward pause as he ponders the fate of his wife's dueling hair patches] Now, I don't have a medical degree, but why wouldn't we just go into the already messed up side?

 

BASTA

[Leaning on a side table and trying to not giggle at the BEFUDDLED PATIENT'S HUSBAND'S awkward pause] We don't want to put a completely foreign object with no immune system back into the area that has previously been infected. If there is any left over bacteria, we would be giving it a missile to grow and then spread to the stomach.

BEFUDDLED PATIENT'S HUSBAND

[Still perplexed and scared of TWO Walters poking out of his wife's head] But we have clean CSF results. Isn't that enough proof?

 

BASTA

[Making sure to direct his attention to BOTH the BEFUDDLED PATIENT AND HYSTERICAL HUSBAND] Nothing is certain in medicine, and there could still be Staph left in her scalp, skull, or ventricles on the right side. However, left side is clear. We don't want to start all over again...right?

 

BEFUDDLED PATIENT

[Loudly with furrowed eyebrows] Oh hell no!

 

BEFUDDLED PATIENT'S HUSBAND

No, I guess not.

 

BASTA

Hey, we are lucky you have recovered so well and are alive. [BEFUDDLED PATIENT has a "What The Hell" look on her face as she feels that BASTA is being a bit dramatic] So if we decide on a shunt, the left side is the best bet. [Something clicks in BASTA'S brain. He looks at HYSTERICAL HUSBAND'S Mizzou Jacket] You going to Nashville?

 

BEFUDDLED PATIENT'S HUSBAND

Huh? To have the surgery? [pause, looking at BASTA'S eye line] Oh, you mean am I going to SEC Tournament? No, not this year. Maybe when we get good.

 

BASTA

Yeah it is a shame it isn't happening in KC. That was nice. Me and my buddies would go to The Cashew and drink then go get tickets from the street scalpers.

 

BEFUDDLED PATIENT

Sooooo....when will we do this surgery?

 

BASTA

By the end of the month [neglecting to give BEFUDDLED PATIENT eye contact]. Where do they have the SEC tournament?

 

BEFUDDLED PATIENT'S HUSBAND

Oklahoma City.[He has realized the conversation has veered off course] Oh, wow! That early for the surgery?

 

BASTA

Yeah! We wouldn't want anything to get worse and you want to be better in time for school to be out. She would need all of April and May to recover.[Directing all attention to BEFUDDLED PATIENT'S HUSBAND]. You know Oklahoma is a lot like Kansas City. You wouldn't chose to live there.  

 

BEFUDDLED PATIENT

[With a scorned woman voice] But you ARE NOT moving right?

 

BASTA

[Looking at BEFUDDLED PATIENT] No.

 

BEFUDDLED PATIENT

OK, because your name is written all over my head. I am sorry, but...

 

BASTA

Don't appologize. I am your advocate. Things like hitting your head happen. It is just the cards you were dealt. You know this reminds me of when we bought a pair of $90 shoes for my infant daughter and they got lost. [BEFUDDLED PATIENT sees the conversation taking another detour but hunkers down and listens to how her brain is like a pair of overpriced shoes only a nuerosurgeon would buy his baby daughter]. I can remember it; my mother-in-law was in town and all of us came home from the grocery store to find that Addie didn't have one of her shoes. And one shoe is pretty useless...right? I became mad and huffy about the fact we even bought $90 shoes, but then we didn't need to be losing them also. During my tantrum [giggle] my mother-in-law taps me on the shoulder and says [giggle] "This isn't going to be the first pair of shoes you lose." Right then I got it...shit happens!  

 

BEFUDDLED PATIENT

[Smiling] True, yeah...true! Totally! [a bit confused if the shoes represent the shunt or her brain or just life in general] So do you predict anything happening to this shunt?

 

BASTA

Medicine is not an exact science, so yes there is a chance; but small.

 

BEFUDDLED PATIENT

 Let me put it differently. I, an adult, have had both a malfunction and infection in the first year of having my first shunt? Will this string of unfortunate events likely happen again?

 

BASTA

I can't for certainty say yes or no. I have put many shunts in and then never see the patients again. Now some move away, but it is unlikely HUNDREDS of them moved away, so I am assuming their shunts worked well. If you have another malfunction we will go from there, but I would think positive and stop hitting your head [he snickers]. Also an infection doesn't just pop up one day. Either there is an systemic infection or trauma to the shunt and a good majority of patients avoid both.

 

BEFUDDLED PATIENT

Ok, lets do it! However, can we negotiate the night in ICU?

 

BASTA

[Looking as if this was NOT a common request] We can keep you in recovery until you are ready to be released to the 6th floor.

 

BEFUDDLED PATIENT

[Feeling as if she won a tiny battle] Deal!

  

I have painted Dr. Basta to be a complete ding bat who most likely has ADHD and can't stick to the point in a conversation. However, my Cluster of Crap would be a lot more boring without his social flaws and inappropriate side stories. Furthermore, I honesty I trust him to be my brain's plumber again. My anxiety was in check the whole time and I am proud to say that for the first time I didn't feel dizzy (or actually pass out) leaving his office. Maybe that is a sign that I am totally at peace with my pending surgery and the ACTUAL end is in sight.

 



  

So Walter will have a baby sister named Meg in honor of some new and kind friends who have two cats named Walter and yes, you named it, Meg. She will arrive on Monday.

#1-Finding Peace in a Swollen Optic Nerve

There has been a lull in blogging because I was nervous about finding a GREAT and FANTASTIC story for #1 on my Top Ten of Ridiculousness. But then I remembered that David Letterman's Top Ten always has a sub par #1. My #1 is absurd because it involves my thought process and no other adjective describes my thinking better than ridiculous

I have been in a "wait and see" mode for the past month. Wait for an undetermined amount of time and see if the blinding headache, tunnel vision, and whooshing sound in my ears to return. Then when those symptoms come, I get to call for a dreaded lumbar puncture order to measure my opening pressure. Needless to say this game is not nearly as fun as the birth waiting game; where you get to spend nine months eating all the donuts and fried pickles you want and then a baby comes. The result of the current waiting game is a plumbing apparatus in my brain, not a cuddly baby. Patience has never been a virtue of mine. I desperately wanted to wait and learn the gender of all three babies at birth. However, with each baby I buckled at the infamous 18 week sonogram. My lack of patience has made my panic worse many many times. I am sure most medical professionals tag me as a pushy lunatic when I continue to hound them for time lines on treatments or illness durations.

I went to go pick up some medical records from my eye doctor Tuesday and he asked how things were going, so I went into my pitiful diatribe about waiting. He had a few moments, so he suggested he take a look at my optic nerve. A swollen optic nerve had been a hallmark for my pressure being high. It was like he could tell I wanted to know something concrete about the brain situation. He took a fancy-eye-doctor- flashlight and flashed it into my naturally dilated eyes to get a glimpse of the back of my eyeball. The margins of my left optic nerve were "undefined" meaning it had begun to swell again. Hallelujah! A world of relief lifted off my shoulders.

 

Now you are probably questioning why I was so relieved...huh? Here is where my ridiculous thinking comes into play. I had been having minimal symptoms (1) headaches (2) mild nausea (3) ringing in my ear (4) unreliable vision (5) stiff neck. In fact many IIH sufferers endure these symptoms for years before a diagnosis is made. In my heart I knew the pressure was rising, so I knew that the condition was back. However these five symptoms are not acute enough to warrant a new VP shunt to be placed. Leaving me to wonder if I was making up the symptoms and leaving me with no treatment and the possibility of never feeling healthy again. Furthermore no treatment was like getting lost in a black hole. This stung for me especially when I had a treatment (VP shunt) that was working beautifully not two months ago. So when the concrete Papilledema (swelling of the optic nerve) was seen, I became confident that I would get treatment because in the medical world Papilledema was acute enough to act on. I would NOT be lost in the black hole that many sufferers fall into and never escape. I would feel normal sooner or later.

So I am a bit bummed the condition did not go into remission (I was not hedging my bets that it would go into remission), but I am relieved I have acute enough symptoms to get treatment. Ridiculous...right? I never claimed I was a logical thinker. I will have an official eye exam March 6th and meet with Dr. Basts March 12th. Until then, I will have a lot more patience because of my backwards thought process and my eye doctor's ability to act.