Hospital for Days

Weekend hospitalists. Those in the know...KNOW! They don't understand your personal case, and they don't bother, so they give orders to take the most random junk meds that cause more harm than good. 

This time the hospitalist had a genius idea. I was anemic, so he ordered iron pills. Pills. Recall my visit with Dr. H, before all this started, was for an iron infusion. Well, I was stupid and took them knowing exactly what would happen. Stomach cramps, metal mouth, and because everything tastes like metal I loose my appetite. 

After three doses, I refuse to take anymore iron, but my appetite is already dead. And then the hospitalist freaks out because I'm not eating, so genius orders Ensure & sends in the hospital nutritionist. 

Ensure. Not sure if you've ever tried Ensure, I myself have only attempted the "juice" version. They should have named it Liquid Sand. It sucks all the moisture from your mouth and leaves behind a delicious gritty feeling. Lovely, right? Refused that asinine order without batting an eyelash. 

Oh, the poor nutritionist...

Before this tale you need to fully understand my mindset. I was admitted into the semi-ICU. At Gwinnett Medical Duluth, that means a room with windows for a door and a privacy curtain that no one fully closes when they exit. Basically an introvert's version of Hell. The drain tube made it terribly painful to move, so simply getting up and closing the curtain wasn't so simple (especially when attached to an IV pole). Hell I tell you. Visitors walking by looking into your room like you're a caged monkey. Pure Hell. Add in some nutty hospitalist's orders, and now the scene is fully set. 

I was not wearing my wig, so even if she hadn't reviewed my chart, it's pretty clear I've been on chemo. She asks why I'm not eating. Because everything tastes like metal. Because doc ordered iron pills that my personal doc wouldn't even think to prescribe. Oh boy, I gave her some attitude. She asks if I've lost weight recently. I'm not sure how I didn't bust out laughing, but I do turn and give Fred the "bitch lost her damn mind" look. (Sorry. That's what it's called. And you know that look because you have one yourself!) Eventually she leaves, probably thinking I'm pretty much the rudest person. Ever. Grace hit the escape button that day. 

Monday comes. Monday I'm told I'll get out Tuesday. Tuesday I'm told Wednesday. I'm getting frustrated. Stuck in a gerbil cage of a room with zero privacy loosing my mind. Tuesday night the social worker comes in and tells me Dr. H's office told her Friday. TEARS! Fred fills her in on why I'm crying. 

[We later find out the social worker flat out lied, and Dr. H's office never said Friday. In fact, she told them Friday because of paperwork she would need to file.]

Wednesday comes. Dr. H says it's up to the Russian (Dr. V, the infectious disease doctor). The Russian says I'm good to go, but wanted me to try a new antibiotic. One he wanted me to be using for several days, but never put in the order. 

My Aunt comes in for a visit, I get one IV bag in, the drain tube gets removed, and I'm out the door within maybe forty-five minutes. I'm scheduled to visit the Russian's office the next morning to pick up supplies, and learn the IV routine. 

Abscess Treatment Plan:  

IV antibiotic, 3 times/day, every 8 hours for four weeks. 

Meaning no chemo for at least six weeks. Meaning while I had everything perfectly scheduled, and my 12 rounds of chemo & reversal surgery would have been completed by year-end, that perfect schedule just blew up in my face. I wanted so desperately to start 2016 fresh. And more importantly, before our insurance deductible reset. So, after some tears, I edit my thought process:  I'll get my 12 rounds in & start 2016 chemo free!

The Infection

The day after liver surgery I had a blood clot and right lung collapse. No chest tube. They sent me to ICU, gave me high flow oxygen, and let it "reinflate" itself. This meant when I left the hospital, I still had fluid around the lung. 

Two weeks later I returned for a follow up MRI. The fluid was still there, but Dr. S's thought was it would clear itself naturally. And natural is always better than shoving a catheter into someone's back to drain and risk infection...hahaha. Ha. Infection. Funny story. 

Another two weeks pass, I'm cleared for chemo and knock out round #7. The following week the pain is worse. It's painful to breathe. I cannot hold my breath more than 10 seconds. Just getting to my doctor is a feat. Fatigue is one thing. I can push through the loss of breath...because I can breathe. When you're working with one and one third lung, walk 15 feet without stopping and you're a darn hero!

I had mentioned the pain was a little worse during my pre-chemo chat with Dr. H, but this appointment I complained more and was sent for a chest x-ray. I was also anemic, so while waiting for x-ray results the plan was to get some iron through IV. That didn't happen. The finding was an abscess, and I was immediately admitted to the hospital. 

And then the talking heads got together. Dr. H was generally uncomfortable making decisions about the abscess. (It's another doctors work, they know the area, what they did, blah, blah, blah.) So he calls Dr. S (liver surgeon), who explains only 10% of his patients need draining and he still thinks natural is best. And the infectious disease doctor (Dr. V, aka The Russian) says no temp, no infection. So while I'm still in pain, and after two days of waiting in the hospital, they decide to release me. If I run a temp, I go to the ER. 

Fun fact. It seems every time a doctor throws out a percentage, I am that stupid fun percentage. Hours after I get home I start running a low grade temp. And by that night we're minutes from going to the ER, and then the temp drops. I was taking Loratab with Tylenol and didn't realize it was causing the temp drop. The next morning another fever, so I call Dr. H's office and we're off to the ER. 

I'm admitted around 9:30 AM, and by 2:30 PM we finally get rolling and the abscess is finally drained. Up until this point I thought the abscess was in the lung area, but I find out it's actually located where the liver surgery was performed. Upper liver. Hard to get to..remembering the first biopsy. 

Thankfully they kept me pretty sedated for the drainage, but it was still painful. The catheter was inserted right under my boob, practically going through breast tissue. Yeah, pain! And then I see the syringe of fluid they are pulling. It's not fluid. It's blood tainted white gunk. Like "light chocolate milk" according to one of the nurses. And these are not small syringes that are being used. The doc instructs the nurse to admit me into ICU. 

Five gigantic syringes later, I'm moved to my side, and they start to drain the fluid in my lung. There was a problem with the catheter so they only remove 100cc, but it's all clear. Basically the abscess was causing the fluid build up in my lung, it was unrelated to the lung collapse, and would naturally clear now that it had been removed. 

The drain tube is left inside. It's about 2 feet of tubing that is shoved under my boob & ribs. This thing is painful. I learn as long as I don't move the pain isn't bad. Bathroom visits required a shot of morphine to manage to pain of moving. 

Dr. H stops by for a visit during his evening rounds. He's shocked that I was walking around with all that gunk, and not really complaining when I had every right to complain. "Oh, here's Heather with a football of abscess fluid...it kinda hurts here Dr. H." Before he leaves we ask when I'd be released, he said Monday. 

Liver Surgery

To be completely honest, my memory of this hospital stay is hit or miss. I went into surgery praying they would use my port, but then they "didn't have the right needle". Emory University Hospital. Didn't have the right needle!? The same hospital the CDC sent Ebola patients. Rrright!? We made a deal, as long as the IV could be switched to port after surgery. It took 9 pokes before they even found a vein. Then as each vein failed during surgery, they had to find another. I awoke from surgery with an IV line in my wrist, elbow, and neck. Ever had an IV in your neck? 

The most. 

UNCOMFORTABLE. 

IV placement. 

Ever!

[Not even going to mention the super fun part when they removed the neck IV and the adhesive from the tape pulled my skin off.]

They were nice enough to start my IV drip for pain early, so I awoke from surgery in much less pain than usual. (I'm usually in non-existent tears "screaming" barely a whisper 10...it's a TEN!) By that evening I was able to comfortably sit in a bed side chair, and the next day I was out walking working hard toward a quick recovery.

And then it happened...

In every caregiver story, there is a moment that occurs that scares you to death. It's the moment you truly realize you hold someone else's life/death decision making powers. This was Fred's moment. And most of this comes from Fred...

The second night I fell asleep around 8:00 pm. The nurse tech came in an started taking my vitals. She notes my O2 levels dropped dramatically to around 35%. Normally they don't want O2 to fall below 90%. My right lung had collapsed. Fred quickly went to get help. I was hooked up to high capacity oxygen and moved into the ICU, where I awoke to another barrage of needles. I counted 26 pokes. "We only poke twice." Per nurse! (I can only imagine the call for backup and a line of nurses, 26/2 = 13 nurses.) I was out of it, I completely forgot I had been through surgery, and kept asking them (terrified) if this would change my surgery date. 

By the time the ICU doctor started asking the basic questions I was still out of it. Typical who is President, where did you go to school, do you have pets/what are their names. Snuggles & Seven. No...Seven & Dexter (Snuggles had passed a good five years ago). I looked at Fred terrified and in tears. 

Fun story. This doctor is the sister of an old high school friend. The Laird sisters have unmistakable piercing blue eyes. I could recognize that, but not recall my pets names. I think asking if she was who I thought she was put her at ease medically. 

My stay in ICU continued with more tests until they finally found the collapse was caused by a clot in my right lung. Just earned myself six months on blood thinner meds. After three days in ICU, I was moved to a regular room with regular nurses. In prison terms, general population. And in hospital terms, I'm pretty sure the experience is the same. 

I was going to go into a bitter diatribe about my stay and care in "general population", but I prefer not to go there. If you're stuck at Emory, you want the specialty floor & nurses. In general, my stay at Emory taught me to fight. I will not be poked another 26 times in a row while someone searches for a vein and refuses to use my port. It taught me I know my body better than anyone else, and it's okay to refuse meds. I will not take ridiculous meds that I know do more harm than good. 

Of course, when you're drugged, the fight gets harder, and that's where always having someone present to help you fight becomes necessary...

At one point our AC went out at home, and Fred had to leave to get it repaired before I was released. Enter our dear friend J. A friend that had her own health issues she had been fighting through the last two years (TWO YEARS!), but she dropped everything to stay with me while he was away. And fight we did! When the doctors made their rounds the next morning, I told them I was leaving that day and didn't care if it was AMA. I couldn't put up with the nursing staff one more day. 

Usually I don't make such a ruckus, and later apologized to the doctor. I explained the nurse care was frustrating, and the doctor really didn't seem too surprised. The day I was released, the nurse was fighting with the doctor in front of me. I mean, I don't know hospital policy, but fairly certain that's a no-no. In the very least it's classless, but a testament to the care I received in GenPop. 

Chemo Vacation

In preparation for the upcoming surgery, and to make sure my blood levels were normal, my last round of chemo (#6) was July 13th. My pre-op & colonoscopy are scheduled this week. Chemo free for nearly a month?!! Hello vacation!!! 

The FOLFOXIRI was so rough I decided to throw a halfway party for myself as reward. I needed desperately to acknowledge and celebrate my success. To all my dear friends and family that made the drive (and those that were there in spirit), thank you! 



The past two weeks I've spent my time visiting with friends that I haven't found time, or I had to cancel plans due to chemo. And getting some time in with the nieces and nephews while I had energy. No joke. The last time I played puzzles with Brooklynn I was so weak I had to tap out after two. Add chemo brain to the mix. I got schooled by a four year old! It wasn't pretty. 



TMNT with Rylan. Candyland with Brooklynn. A carousel ride with Jackson. Mother's blueberry cobbler. My spirits are fully recharged. I'm feeling strong and ready for the next surgery. 



In other news, I took the cue ball out in public for the first time. The wig is too hot and miserable to wear outside in the summer. I honesty forget I'm walking around bald, at least until I notice the stares and double takes. It's okay. Everyone has a cancer story, right? I convinced myself I reminded them of their loved one or friend with cancer. 

You know what would be great, if those stares were followed with a word of encouragement. Being on this side has made me rethink my own reaction. Tell her she's beautiful. Tell her she's strong. Change her story. Imagine. If someone had the courage to reach out, my story would be completely different. Our words have power, use them well. 

Cancer

A dear friend recommended a NetFlix special on Tig Notaro called "Tig". It felt like someone was telling pieces of my own story. And if she thought her story was funny, well, mine is down right hysterical! If you're filling in the blanks, you already know what's coming next.

I've got the cancer.

I was diagnosed at then end of February, and decided to fight silently. But for some reason, in the last few weeks, I've felt like it is time to share my story. I've been weak. Mentally. Physically. But as I started writing, I started feeling stronger. And that was one of my goals. So here we go...

Note:

•Most of this has been written at night while experiencing pain med induced insomnia and recovering from an intestinal virus. Don't judge too harshly. 

•Though this has all been written over the last month, I've post dated everything to correspond with the correct date. I've provided links to posts in chronological order below.

~~~

Everyone hears the word "cancer" and has the same reaction. I still remember when my dad's cousin, Barbara, told me he had cancer. The shock. The tears. The fear. But when I was given my own diagnosis, I felt peace. Cancer has worn out its shock value. The only thing going through my mind was "Okay Schiller, put your heels on, it's your turn to fight." [Cue 'Eye of the Tiger'] Yep, I could hear the 'Bam! Bam Bam BAMs!' in my head. 

And then came the hard part. Friends. When you were your dad's primary caregiver, and you find yourself walking in his shoes two years after he passed, the places your mind goes aren't so fun. But those thoughts will remain between me & God. Words have power, and I choose not to give them that power. At the same time, I want to acknowledge that I went "there". And occasionally, on the hard days, I find myself "there" again. 

My lowest point was when I started loosing hair. My chemo regiment (FOLFOXIRI) is aggressive, but hair loss isn't a side effect. I was told my hair would thin, and it would start midway through treatment. But by the second round, I was shedding hair. Shedding! I had held on to the idea of being sick but not "looking" sick. Lady with bald head screams "I HAVE CANCER!" 

Fred tried to make the shave fun, but I was miserable. I closed my eyes as the long hairs fell to the floor and felt my identity slip away. I look in the mirror at a body full of scars and face that I simply don't recognize. And that's on a good day. The bad days it's straight up Uncle Fester. (No, I haven't tried the light bulb trick...yet.) 

So I write. I write in hopes I'll find strength in giving this story a voice, and with that strength I'll find my reflection. I write because I want to recognize the lovely friends and family that encourage and lift me up when I am weak. I write because, once again, my husband finds himself being a caregiver to a cancer patient. I write because I want people to know cancer doesn't always come with a warning. I write because my treatment is so rare I haven't found much information, and hopefully others facing the same treatment will find this and go in little more prepared. 

Cancer type:  Colon...just like my dad. The kind that "older" people get. Typical reaction from anyone in the medical field is "oh, you're so young". Yep. Story of my life! 

Symptoms:  ZERO. I went to the ER because I was vomiting & dehydrated. I thought it was food poisoning. It was a bowel obstruction, and that's the only reason the cancer was found. I thank God every day for that bowel obstruction!

Family History:  It's recommend that with family history you get a colonoscopy 10 years prior to family member's diagnosis. That would have been 50 (52 to be exact), the typical age you start getting checked. I had planned on 40 to be extra precautions. Ha! If Fred & I are able to have children, their screenings would need to start at 24. 24?!!

Fun Fact:  I'm the second youngest patient my oncologist has treated for colon cancer. The other person was 18, and genetically predisposed. My genetic test came back negative. 

Warning:  Being colon cancer there may be things some find a bit TMI. I'll give a TMI warning!


Chronological Order:

1. Diagnosis*
2. Recovery
3. CT MRI Biopsy, Oh My!*
4. Treatment Plan & Chemo Round 1*
5. Chemo Round 2
6. Shots! Shots! Shots!
7. Chemo Rounds 3-5
8. MRI Check Up*
9. Chemo Round 6*
10. Digging Deep (pun intended)
11. Inspired

*Diagnosis & Treatment Updates

Inspired

Last night I randomly decided to watch Bryant Gumble's sports thingy on HBO. Yes, pretty sure that's the actual name of the show. (Probably not.) It was a segment about the domestic violence rate within the MMA. They interviewed Christy Mack who was beaten by her ex and sporting a bald head. And the reason she gave for being bald, it signified a rebirth. 

Well, isn't that a lovely way to think about chemo and going bald!?

I have never watched Bryant Gumble's sports thingy. I have never watched more than 30 seconds of a MMA fight. I have never heard of Christy Mack and something called a War Machine. A quick Google search and I learned she's apparently a porn star. The ex hacked her hair during the attack. She shaved the rest. And she too struggled with her new look, "It's hard to look in the mirror every day and see someone you don't know." 

My goodness! I'm always fascinated by how and whom God speaks through. So many would ignore her simply because of her occupation, but I deeply thank her. I have struggled with my hair loss. I needed desperately to rethink my situation. I needed hear those words. From a porn star beautiful human being. 

So here I am

Fighting

Proud 

Strong

Being reborn

And I know one day

me and this bald head

will feel beautiful again

Digging Deep (pun intended)

Another day. Another doctor. 

Dr. T is my GI doctor that I've never actually met. Dr. E (Surgeon #1) wanted to personally do the first colonoscopy, so Dr. T got the boot. The only difference between the two colonoscopies (besides the doctor) is drinking the fun juice. This appointment was basically to meet and prescribe the medication. 

The one thing Fred and I noticed was how uncomfortable he seemed. We've noticed this with every first meeting of each new doctor. They don't seem to know how to handle someone my age having this particular cancer. 

Dr. T must have thought I needed some hope. He kept telling us about a friend of his with the same cancer/same stage/same mets (older, of course) that is doing well over five years later with maintenance chemo. I think they expect me to be afraid, or nervous about the future. 

What they don't know is that I've had an amazing life. Every new experience has perfectly prepared me for the next. The night before my dad passed, as he made his final transition, was the hardest thing I had ever experienced. Honestly, it left me terrified. I knew it was preparation for the next hardest thing, and what could be harder than watching someone you love pass away while being responsible for their care?  

Well, here I am. Facing down the same disease. Knowing all the statistics (that I push to the back of my mind and ignore). Knowing what the end stage looks like. But also knowing wherever this experience takes me, I have the strength to push through. Physically. Mentally. Spiritually. I entered this world made to be breakable, but repairable. And after everything I've been through, I like to think of myself as bendable. 

"The robbed that smiles steals something from the thief."

-Shakespeare