Health Update: 2017

Fair warning. This one is long. Go ahead grab some popcorn, make a cocktail, put the kids to bed, take a pee break (if you're not already reading this while on the throne). I'll wait...

...no really, the cocktail was for me.

First, let me clear up a little confusion. My last social media post was a bit confusing. By posting I was "at Emory" some people believed I had been admitted, when in fact we were there for our consultation per my last update. Just a visit. Not a sleepover.

Secondly, I'm going to lay down some quick knowledge. While everyone is "aware" of cancer, very few seem to understand the basics like staging. Maybe it's time for a generic cancer education month. In all honesty, I avoided putting it out there because I was so fiercely protective of the words I spoke. While I struggled to remain positive, I didn't feel it was my responsibility to educate. The information is out there. It takes 3.6 seconds to google.

But here we are. Walking down the road I mentally prepare for but never verbalized.

By definition, Stage 4 means medically incurable. BEFORE YOU EVEN START:  That's not to say there are not Stage 4 cancer survivors. I'm saying in order to survive, you need a miracle. Because of medical advances in cancer treatments many diagnosed Stage 4 are thriving and living longer than ever before. As long as they have a chemo drug that holds off growth, and the researchers keep pushing out new/improved/effective treatments; more choose to view Stage 4 as chronic versus terminal.

And that has been my mindset. I have chronic cancer knowing complete healing will only come from God. Some of you may have even picked up on my word. I refer to myself as a cancer "warrior" versus "survivor" because my fight would continue after chemo. Survivors quickly return to their old life with little effect. Warriors may return to their old life in small ways, but continue to float back into the cancer universe be it lifelong side effects or additional treatment.

Currently the cancer cells reside in two lymph nodes on my left upper abdomen, and a new spot on my spine L4 vertebrae (lumbar). Inoperable.

I need a miracle.

Medically I will restart chemo, and be on it for the rest of my life. Chemo is not the cure. God is the cure. Chemo gives me time. Maybe enough time to see Joe Biden's cancer moonshot find the medical cure for cancer. Chemo until God gifts me with a NED (no evidence of disease) or the chemo stops working, at which time we move to the next available treatment and pray it is equally effective.

Thankfully I will be able to continue treatment at my oncologist's office in Duluth. (((Volunteers please see last paragraph.))) The plan is to restart my previous chemo regiment (the easier two chemo drug concoction) FolFiri because it has already proven effective. Currently I'm weighing a choice of biologic that will be paired with chemo. Avastin or Erbitux. One google search for "erbitux rash" and you see the dilemma. Given my skin sensitivity and anytime they say only 10% chance, I fall within that 10%, we're leaning towards Avastin.

Have I wrapped my head around this? Not in the slightest. No matter how prepared, it doesn't make reality easier to digest. Just as one goes through the stages of grief, I imagine it will be the same. Ever so slightly more steps forward than back. I expect I'm going to make an ass of myself (more than once). And I will find a place of acceptance and peace in a much different way than friends and family members.

This feels like the most discombobulated post I've ever written. I generally try to focus on the good, but some days I get bogged down with what cancer has stolen. That part hurts. Life is very different from what I had envisioned.

I'm grateful for your continued prayers.

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VOLUNTEERS:  Yes, even though chemo is local we still need help! The less time Fred spends with me at doctors offices, the more time the two of us have together AWAY from cancer. Fred will prioritize and attend post-scan appointments, but your gift of transportation is a massive blessing! I will be setting up a Care Calendar, if you're familiar with Meal Train it is a similar concept. I can request/schedule transportation, meals, or simply set visiting hours.  Chemo is scheduled to restart January 30th, so looks for a post on FB within the next week. (Thanks to Andrea for the recommendation!)

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!

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.)

Shots! Shots! Shots!

Shot #1:  Neulasta is the most painful. It's purpose is to produce more white blood cells to help fight off infection during chemo. But holy bone pain! 

This shot is given on my 3rd day post infusion (when I return the 5-FU bag). The bone pain starts within hours and lasts 3 days. These are the days I feel like Uncle Fester. Hunched over, barely wanting to move. If you stay in one position you're good, the second you move it feels like you've aged 50 years. 

The nurses told me Claritin & Benadryl can help, but you have to start it the day before the shot and by then they stopped administering the shot. The only time I didn't have pain was after returning my 5-FU bag a day later than usual, so the shot fell on 4th day post infusion. 

Shot #2:  Lupron is the most annoying. It's purpose is to put me into early menopause in hopes of maintaining fertility after I'm done with chemo. And holy hot flashes! Chemo alone causes hot flashes, so hot flash on to of hot flash. There are nights I wake up to a wet pillow. It's disgusting. 

It does have one positive affect. Having endometriosis I usually have to battle hormonal skin breakouts, but my skin has never looked better. At the same time it's darkening sun damage I received as a kid, so freckles and sun spots are loud & proud. But I'll take freckles over breakouts any day!

Treatment Plan & Chemo Round 1

My oncologist (Dr. H) has me on an aggressive treatment. Most with colon cancer are treated with either FOLFOX or FOLFIRI. I'm getting FOLFOXIRI. Three different chemo drugs (Oxaliplatin, Irinotecan, and 5 FU) at +20% the normal dosage. 12 rounds. 6 hour infusion, and a take home chemo bag that infuses 5-FU over 46 hours. It's a harsh treatment, but attitude is EVERYTHING!

We went over side effects:  nausea, diarrhea, anorexia/loss of appetite, metal mouth, and hair thinning in later rounds. The diarrhea thing was the most emphasized side effect, and this is where I learned to be thankful for my tummy gremlin (stoma). Some people on chemo end up wearing diapers or having to apply a little butt paste. Thankfully that wouldn't be my experience. 

Round 1:  I wasn't expecting it to be hard. Everything I've read and experienced with my dad told me the first round was the easiest. Chemo compounds and gets harder over time. 

With about two hours to go the neuropathy started affecting my speech, and then the nausea hit. My tongue was half numb, so my speech was slurred. I refer to it as being chemo drunk. I was so nauseous I needed a wheelchair to get to the car. By that evening the neuropathy & nausea subsided, and I thought I was home free. 

Nope. The infusion was Tuesday, and by Saturday the nausea returned. I had Zofram and Ativan to help with nausea. Zofram is hit or miss. Ativan knocks me out. The more I moved the worse it got. Fred ran out and got ginger gum, Dramamine, and an essential oil based product to rub behind my ears. Anything he found for nausea, he bought!

I had a newborn photo shoot scheduled, and I had to leave the shoot early. I was struggling with fatigue, a hormonal hot flash on top of chemo hot flash, and nausea every time I moved. It was awful. I hate failure. I promised to return the following weekend. 

By Sunday I was weak & dehydrated. I waited until Dr. H's office opened to go in an get some fluids. I was feeling pretty terrible, and Dr. H decided to admit me for a "tune-up". He explained early on to expect 24-hour tune-ups. He'd rather me go into the hospital for a day vs. trying to tough it out and be admitted for a week. 

Once we got the nausea under control and I was able get some food down, I was ready to be released. I had gone in just before my blood levels started to drop, so the upside was now I had an idea of when I needed a "tune-up" before my levels got out of control. 

I continued through the rest of the week struggling to eat. Loss of appetite is such a strange feeling. Your body is hungry but nothing is appealing. Nothing. And sometimes trying to force food brings on nausea. I downed a protein shake so I had enough energy to get through the make-up photo shoot. (I'm truly grateful that family was so incredibly understanding.)

My appetite returned the day before Round 2 was scheduled. Needless to say Round 2 was delayed a week. But the upside is I had Biopsy #2 scheduled, and based on the first biopsy I needed time to recover without chemo. In all honesty I wanted to push through, but Dr. H's saying is slow and steady wins the race.