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 

Chemo Round 6

While getting blood work Fred & Dr. H had a chat, and this is why I love my oncologist. I need for them to have a relationship. And the truth is, we both had a relationship with him through caring for my dad. So while it's been strange literally walking in my dad's footsteps, getting chemo from the same chair he once sat. It's also refreshing being truly comfortable with my oncologist from day one. 

During their conversation, Fred had apparently expressed our concern with Dr. S and the MRI debacle. And Dr. H was quick to put me at ease. "I would tell you if I didn't think he was a good fit, but he is your surgeon." The relief was immediate. 

Going forward chemo is changing. We were in fight mode, throwing everything I could physically manage to shrink the lesion, and now we are in maintenance mode. Instead of being knocked out for a week+, Dr. H wants to get it down to three days. So new treatment is FOLFOX with a biologic (and I can't remember the name)...it's the one that hinders growth of new blood vessels to feed any cancer lesions. And we will reevaluate after 12 rounds. Yes, I expected this. Many people with stage IV continue with maintenance chemo. 

With surgery around the corner, and because chemo causes blood levels to drop, Dr. H wants chemo to stop three weeks prior. Meaning #6 will be my last round, and it will pick back up four weeks after surgery. He doesn't want me drinking colonoscopy "fun juice" while on chemo, so trying to squeeze that in the week before surgery. 

My blood levels were still a little off from the intestinal virus, so Dr. H let me decide if I felt strong enough for this round. While I still felt a little weak, I was okay to push forward knowing it would be easier than previous rounds. 

I struggled through this round a little bit, but nothing like previous rounds. The infusion only took three hours. (Previous rounds took six-seven hours, depending on what side effects decided to show up.) A little nausea, a lot of fatigue, but by day five I felt well enough to get out of the house. For the first time since March, I'm able to enjoy every weekend. Holy moly I can manage this chemo! Especially knowing it will be even easier when my blood levels improve. 

By the way, I struggled with that intestinal virus for three weeks. That thing completely knocked me out! This virus is something healthy people recover from in 2-5 days. Having a weakened immune system is no joke!

MRI Check Up

Most people tend to get nervous before their MRI check ups, but because I had a CT that showed clear shrinkage I was feeling pretty good. At least until we started driving, and then nerves kicked in anyway. 

Dr. S (Surgeon 2) scheduled a consultation immediately following the MRI. I was expecting good news. What I got was the exact opposite. 

I have one lesion on the liver that measures 1.5 cm. What I was told is now I had four lesions. Four! (Somehow I remained fairly calm, fairly certain it was shock.) We were told I have one lesion in the middle, three surrounding. 

Then Fred asked about the markers he had placed during the MRI assisted biopsy. Blank face. "You had markers placed? How many?" (Um, yeah...three and YOU ordered them!) "Well, the radiologist is having a hard time reading the MRI." (Well, how about you & the radiologist read my damn chart before you unnecessarily scare a patient to death!) "I want to see you again after the radiologist has more time, I prefer in-person consultations." 

And then he started asking me questions about my ostomy surgery. He couldn't read the surgeon's handwriting. Totally get that, but maybe call the surgeon and ask him. (The questions were far too technical for a patient to answer, and others I simply didn't know.) 

Surgeon 2 questioning me about the ostomy and not Surgeon 1. The fact that he clearly hadn't read my chart and refreshed himself on my case before the consultation. I was left with a bad feeling about this surgeon, and if there is one thing I've learned it's trust my instincts! I went home that night and started searching for a second opinion. If he didn't straighten himself out by the next appointment, I was moving on!

The next appointment. He immediately starts talking surgery. We had to ask him for the MRI results. "It's shrunk 50%." (Okay, what about the other "lesions".) "They were reading the markers as lesions." (Thank you Jesus! ...MORONS! Next time read the chart!)

That's it. Very matter of fact. No excitement or fist-bump like Dr. H (my oncologist). But at least he had a conversation with Surgeon 1 and could clearly talk surgery and recommendations. 

Going Forward:  [TMI'ish Warning]

Liver resection surgery is planned for August 18th. Because of the location it will NOT be laparoscopic. I had already assumed that based the difficult biopsies. Recovery time is 4 weeks (I'll be in the hospital at least 5-days). 

The original colonoscopy didn't get past the bowel blockage. As a precaution, he wants to close the gap and get the other half checked. (I already had a consultation scheduled with Dr. T, a GI doctor.)