Rumors.

I hesitate to put words to it. What if I jinx it? What if I’m wrong? But I hate “what if’s” and also this is my blog. If I look foolish here because I’m wrong, it will only serve to let you experience more of my emotional roller coaster and show you the reality of how I feel. I’m believing I’m cured. Woah, woah, woah! Cured is a big and serious word in the cancer world. I’m not supposed to say that yet. It’s only been just over two months since my surgery. I haven’t had any follow up scans. I don’t think you can use words like “remission” or “cured” for years. However, since this entire thing has been a big faith (taking as fact that which is unperceived by the senses) walk, why not just keep walking that track? Heres the back story…

I was scheduled to start “maintenance chemo” a month ago. The problem was, you might remember, my body hadn’t been tolerating chemo well. We would have needed to find a new chemo that my body could tolerate at an effective dose. At this stage of treatment that would mean going into experimental territory. Experimental simply means using a chemo that wasn’t indicated for my specific cancer to see if it could have a therapeutic effect, obviously, without guarantee of success. Do I even need to tell you what the risks and the compromise to my quality of life would be? My oncologist, being the wonderful and straight forward human she is, told me, “There really isn’t a precedent here and I don’t know what to do.” Goes without saying, I really didn’t want to do more chemo and had a sense, for the first time since diagnosis, that I didn’t really need to. My oncologist asked her panel of experts and they all agreed, as there was no measurable disease, to pursue a “wait and see” approach to further treatment. Meaning, no treatment, to just wait and see if anything shows up. I have blood tests monitoring my tumor markers once a month and CT scans and circulating DNA blood tests once every three months. We’re keeping a close eye on what’s going on. My tumor markers the first couple weeks after surgery were unremarkable, my circulating DNA was zero, and post op scans showed we had gotten all the known cancer. My next scans will be sometime in the middle of December. We’re literally waiting to see. I don’t think we’re going to see anything so I’m not really waiting. What if I’m done with cancer? What does that even mean? What does that mean for my life?!

I get to recover from surgery like a normal person and not be rushed back into chemo and radiation! After all my other surgeries, I’d started treatments within six weeks. I’ve never actually recovered fully from surgery without feeling pretty sick from restarting chemo. At this point in my recovery, I feel great! I am two months post op. I’m off my narcotics and past that uncomfortable narcotic withdrawal thing. In truth, I hate withdrawals so much that I went off the pain meds a little early so I could just get past them and stop worrying about it. Managing withdrawal symptoms is basically a full time job. I am definitely ahead of the curve when it comes to recovering from major surgery! I’ve even returned to workouts and coaching with a mask on (which is quite a lung workout, let me tell you!). My strength is already coming back and I’m starting to push and lean into the discomfort of cardio workouts. I cough reflexively like crazy at the end of workouts and feel like I have asthma when I go a little too hard. Pulmonary capacity can be strengthened just like any other muscle. If you know me at all, you know I’ll work for it. I want it to look like I still have two lungs during training in six months. If COVID clears up I’d like to test my limits in a competition. I’m excited by the prospect of training without feeling sick and weak and look forward to seeing how much ground I can gain with my fitness.

This is where I run out of words and don’t really know what to say. Can it be that I am actually done with cancer? I am still hesitant to “call the game”, say I am “healed,” “cured” or “cancer free”. Where I absolutely believe that God will be the one to heal me and that once I am healed I won’t live my life looking over my shoulder, does that mean I have to be the one to say when that’s happened? Is that day really here? Do I minimize God’s power somehow if I call it early? Does it mean I doubt His power if there’s still a whisper that there’s more to come? What I have been saying with trepidation is I believe they got all the active cancer that was in my body and I don’t believe I am waiting for any cancer to show up. And just saying that means I risk being more heartbroken than I have yet been to date and looking very foolish if more nodules show up. I think that’s the crux of it, I’m very scared to be disappointed in the Lord. He’s been so gentle and kind to me as I stubbornly cling to Him. We’ve worked through a lot along this journey. It’s not what I would have chosen for myself or for my family or friends, or an enemy even, but as I’ve said before I’ve seen unspoken treasures.

I went to my oncologist to check my tumor markers two weeks ago. I was nervous. I didn’t really want to go. I’ve never been really nervous about tests before. It’s always seemed like it was something bigger than me, outside of my control, I trusted I was being taken care of, the path was set and I would be ok. (I don’t know how people live when they don’t understand or believe how much they are loved by God. Makes me feel sick to think about.) So to be nervous now is to say something has changed. Am I not as taken care of? Am I less loved? Is there, all of a sudden, something within my control that I can do? Well, no. So in truth, I shouldn’t be nervous. Yes, yes, it’s natural to be nervous about these things, but for me, it’s important to continue to wrestle for a bigger perspective than my own. In the big picture, nothing has changed. So practically, what does this mental stance look like? The blood test two weeks ago showed a slight elevation in my CEA (tumor marker) from 1.6 to 1.8. Anything below 4.0 is within normal limits so no big deal. But as things go with me, normally, any increase has meant an increase in cancer activity. So what does it mean? In my mental rules, I can’t let it mean anything other than a slight fluctuation. There are too many possibilities that can explain it. It could be due to lab error, systemic inflammation, my immune system responding to a virus, orrrr it could be because of increased cancer activity. Why would I commit myself to worry and doubt and focus on cancer activity and “what-if’s” over other possibilities? Instead, I am going to continue to wrestle for that bigger perspective. I am completely taken care of, deeply loved, and I still feel really good and am recovering well from a major surgery. Since life and God don’t operate independent of each other or in a vacuum, I also need to remember that the second I decided to settle my heart into a course of faith, there would be opposition to that course. Opposition to peace, trust, and joy. This season is full of it, fear, doubt and depression. Here’s the thing, peace, trust and joy are worth fighting for, so I will fight for them, against odds. He isn’t called the God of Hope for no reason, after all.

In two weeks I’ll recheck my labs and tumor markers, and we’ll schedule more scans. I should know by Christmas if I really get to start 2021 without cancer. What a dream that is! Guys, stand in peace and trust and joy with me! Let’s fight for those to reign in our lives! We all have our own versions of opposition to these things. Our own fears, doubts, and sadness. Guys, we need to fight to keep them in perspective and wrestle to have that bigger perspective of our life. Hope will always rise and there is always a dawn that ends the darkness! The story isn’t over. Your story isn’t over either.

Quarantine.

The week before quarantine became official in Los Angeles, I reached out to my oncologist about me working in a hospital with constant exposure to the COVID-19 virus. Even though, I don’t act like it or look like it, I am one of those high risk people. The people that would be severely endangered by infection. I wasn’t particularly immunocompromised, even though I was still undergoing chemo. The thing that made me … nervous (Concerned? Hesitant? I wasn’t scared, I just wanted to be responsible with my health) was that damned pneumonitis that I still had. You remember, the lung inflammation that was still showing up on my scans and holding me back during workouts. It had been there for a year as a result of radiation I had a year ago on my second lung nodule. Even though I was asymptomatic, not short of breath or coughing, I thought to myself, “if my lungs are already compromised, maybe getting a virus that targets the lungs wouldn’t be good for me.” I mean, the reason it kills people is it causes a pneumonia that doesn’t respond to treatment and basically causes organ failure because the lungs can’t provide enough oxygen. Disconcerting. So like I said, I called my oncologist to see how concerned I should be and if I should go on disability until after the virus runs it’s course in the hospital.

I was at a friends house at a beer club meeting (I’m the Chief Lager Officer, were very official) when she called me back. When I take phone calls, I’m a pacer. I walk circles on carpet patterns or go heel toe on a hardwood floor panel or stagger step across tiles. Naturally, I headed into my friend’s bedroom and began pacing as my oncologist casually reported on her family experience with the virus and her patient caseload. “Of course, Amy, I agree it’s a good thing for you to take time off work until this virus has run its course. But mostly because I have other news.” My stomach dropped. What news? I wasn’t expecting news. As it turns out, we had resubmitted blood for my Circulating DNA and she had gotten the results earlier in the week. Apparently, it wasn’t at zero anymore. There was a little spike, .08. I don’t really know what that means and it’s so small that in isolation it’s not of concern but my tumor markers (CEA) had also gone up slightly. With a pandemic gaining momentum, it’s no time to allow my cancer to also gain momentum. “I want to start you on irenotecan again. I know it makes you nauseous but I want to stay ahead of this and continue to be aggressive.” I swallowed hard as tears began leaking out of my eyes. “Well, yes, ok, I understand, of course.” I managed to sputter in the midst of a thought tornado.

Wearing a mask through my entire chemo session is the new norm.

I was crushed. I had just gotten a lifetime PR on my clean and jerk in the gym. Like you can read in my last post, I had been living a lot of life ignoring I even had cancer. My chemo was so gentle that I was feeling amazing for the first time since my diagnosis and had found my stride living in the unknown. I felt like I was being yanked back into the disease. Of course, I can’t just live in the unknowns of the corona virus and quarantine like everyone else, I also had to have unknowns of my cancer and go back to being immunocompromised. I let fear in, guys. I didn’t even think of what God was whispering to my heart. I felt real sorry for myself and got scared I was going to die of corona virus. That I had fought cancer so hard only to get the virus and fight like hell again, but probably lose. What a horrible state of mind!

Then I went and got my chemo hoping only two out of five drugs could have minor side effects and I’d still be ok and functional. Chemo nausea IS SO MISERABLE. There aren’t words. On a scale of one to ten, one being no nausea and ten being throwing up, I had day after day, at a nine. After a week it was down to a four. I wasn’t taking my Ativan or the pre-meds because I thought the lethargy would make me feel worse. I was gagging on my spit and didn’t want to swallow water. I wanted to throw up but knew it wouldn’t make me feel better. The thing about chemo nausea is it’s generated by your brain. The poison center of your brain goes off and tells you to get out whatever you’ve ingested and nausea and vomiting is the body’s gold standard for getting the job done (that’s why when you drink too much alcohol you throw up). Well, when the poison is in your blood, not your stomach and when the nausea is from your brain, not your gut, there is no relief. The antiemetic (anti nausea) drugs keep me from throwing up so I can keep down fluid and food and not get dehydrated. However, I have yet to feel like they help decrease my nausea. I was paralyzed by the nausea and it lasted longer than I remember it lasting during previous chemo rounds. I used to feel better after five days and go into the gym and coach or go to work at the hospital. Quarantine made things worse, I think, because I had nothing to divert me from feeling miserable. I was back to a week on the couch followed by a week playing catch up with my life. I hate that lifestyle. I feel so robbed by cancer when I’m living like that. Not working or seeing my friends was just exacerbating everything.

Quarantine does mean more sun time… that basetan has come in very handy!

I had this resting anxiety coursing constantly in the background. I started having panic attacks like in college. I was being suffocated by the unknowns and I wasn’t handling it well. As I’ve said before, prayer is powerful. What sets me apart in this battle, is the army of people praying for me. In desperation I turned to my worn out duct taped bible hoping to find a verse I’d read before to comfort me. I stumbled upon Psalm 16 and found a verse that cut through my self pity and my perception of the steep cost I was paying in life. Verse 5, “Lord, you alone are my chosen and assigned portion, my cup; you maintain and secure my lot.” And like a light switch, I was ok. It was like my heart said “ohhhh yeah! That’s right, “ and rested confidently. I wasn’t going to die from COVID and nothing in my life was going to be taken from me that I was meant to have and live out. My life’s boundaries, my lot, what I am intended to posses is secure and maintained by the biggest and most powerful force that exists. Despite what a train wreck I felt like, I was shocked there weren’t tears or a major thought battle in reaching this conclusion. But at the same time, when there’s people behind the scenes praying for you everyday, you get to put energy into battles elsewhere, the spiritual leg work sometimes has already been done through other people’s prayers.

My first social distant workout in the front yard!

The battle ground for me turned back to the physical. The gnawing nausea and relentless malaise. After two rounds of irenotecan, for the first time, I asked my oncologist for a treatment break. My body had had it! I couldn’t stand the thought of my body getting wrecked again so soon. I told her about my nine out of ten nausea days, gagging on my spit and the nausea panic I was having for days after chemo. One thing we’ve discussed in the past is the tendency for patients nausea to become stronger because of psychological influences. For example, I’ll start feeling nauseous the days leading up to chemo, or driving the route to chemo, just because of the association and then it makes my day of chemo nausea even worse. My oncologist prescribed Zyprexa, to “help with my nausea” and keep it from becoming too psychological. When I looked it up I found out it’s a big hitter antipsychotic. I hate feeling super doped up but I am not mad about sleeping for two days until the worst of the nausea has past. Chemo has definitely looked different during quarantine than it has in the past.

Quarantine puzzle sessions with my best friends.

Mid May, we had new three month interim CT scans and rechecked the circulating DNA. I wasn’t sure what the CT scans would show. I knew there was increased activity of my cancer from my elevated tumor markers but we had started cytotoxic chemo so maybe we stayed ahead of it as we planned. Were there new nodules in my lungs? Or even new tumors somewhere else? I was ok with any results I got, I just wanted something definitive! I needed a new direction for the battle to go! I was sick of wearing down my body with more chemo! I wanted to have my pneumonitis resolved and the nodules to declare themselves so I could do radiation or surgery! Stay aggressive and fight like hell. Chemo was feeling so defensive and fruitless. That was my prayer, let the scan say something definitive!

We sat down with my oncologist the next day to discuss the scans and next steps (she’s so good to never make me wait long to go over the results). My pneumonitis was gone! Most, if not all, the one to two millimeter nodules in my lungs weren’t visible buuuuut there were two nodules in my left lung that had grown one to two millimeters despite all the chemo. (Side note, my oncologist let it slip just how dire things had been when I had to go back on chemo last June. Apparently there were up to eight tiny nodules in my left lung lower lobe back then! I was under the impression that there had only been six in both lungs combined!! My oncologist is wonderful at shielding me from horrible shadows and keeping me focused on concrete realities and where I need to put my energy. I would have been so disheartened if I’d known it was that bad!!!) So it was good and bad news. Chemo wasn’t working as well as we wanted it to. It was no longer keeping my cancer stable. Growth of cancer is never good news to me. One thing we know, is that my cancer is extraordinarily aggressive and the literature says colon cancer metastasis in the lungs are extraordinarily resistant to treatment. But what was good news, was that there were only two nodules to look at and the scan was definitive! A reminder that God hears your prayers and acts on your behalf is never a bad thing!

We made plans to talk to radiation oncologists and see if we can’t get radiation on these two nodules! The possibility of no more chemo for the time being and changing directions to radiation is so relieving and exciting! I was recently told that up to this point treatment has been pretty by the book, chemo, surgeries, more chemo. But we were branching off now into undiscovered territory. My age and the random genetics of my cancer makes this very unique. We don’t know what chemo will work, how aggressive do we go now at cost of depleting future reserves. If it wasn’t an adventure before, it sure is now. You better believe there’s more to this story!

Next Steps.

(Double post day! You may want to read “Again.” before you read this one. But you don’t have to or anything I’m just trying to be chronological about all this.)

A month ago I was moaning about how I just needed a break. This little heart of mine is exhausted. Tired of feeling miserable from chemo, playing catch up with my life, looming disease and unknown, blood thinning injections, skin breakdown around my ostomy, bad news. Just tired! Well folks, I finally got a break. My CT scan says no growth of any “nodules” and no new tumors or masses or nodules or spots or other synonyms of cancer. My disease is still microscopic and according to my oncologist and radiologist is “stable”.

I’ve still got a four millimeter nodule in my lung and the other two in my lungs are smaller than that and the periaortic retroperitoneal lymph node is still only seven millimeters. But anything less than a centimeter is deemed microscopic disease and some even say it’s not measurable. This is somehow so different for my brain than the it’s microscopic in your lymphatic system and spreading into your lungs even though nothing is really different. I feel more stable like my cancer isn’t exploding and spreading like crazy despite the systemic, hard on my body chemo.

I was lucky enough to get this news before I went to a family church camp that I’ve gone to every summer of my entire life. I was surrounded by people who have known me since I was born and have been prayerfully walking each and every step of this crazy road with me. I have distinct memories in high school and college of feeling like my life was going all wrong but knowing there were people who didn’t know what was going on but were praying for me made something in my heart rest. Knowing people are being more faithful to pray for you everyday than you are to eat breakfast gives you a level of confidence that can’t be generated by positive self talk. It’s powerful. But I got to be surrounded by these people and share the good news with them. It was a pretty cool experience.

A month ago I went and met with my oncologist to discuss the implications of stable microscopic disease on future treatments. What we decided to do is switch to a lighter dose chemo. Thank you Jesus! This means chemo pills and only one infusion. Two thousand milligram pills twice a day for two weeks then a week off (a three week cycle) and Avastin every three weeks. Three weeks ago I took my pills and went in for my infusion like a song bird. I was stoked and had every expectation that I wasn’t even going to notice I was still taking chemo. Neither of the drugs had side effects of nausea so let me at em! I told myself as long as I wasn’t nauseous I could tolerate anything! Well that was grossly unrealistic.

As soon as the infusion started the nausea hit me. I convinced myself at first it was psychosomatic (my mind was inflicting the nausea not the drugs). When that didn’t decrease the nausea I said, ok, it’s only the steroid I take before I get the chemo that’s making me nauseous. It’ll pass once the steroid is out of my system. I was pretty couch bound for the rest of the day which was horribly disappointing. Then the nausea persisted every day I took those damned pink pills. I’m still not sure why I’m nauseous, since it isn’t a side effect.

I was so wanting to get my life back! Go back to work at the hospital, start doing intense workouts again, reopen my physical therapy business, and travel! But nooooo I was plagued by a three out of ten constant nausea that increased to a four an hour after I’d take the pills. Zofran and Reglan didn’t do anything. So I’m resigned to learn to coexist with nausea and fatigue while I take these pills. I get to practice mental discipline and ignore it and push through it if I want to reclaim my normal life. I’ve gained weight which means I’m stronger. I’m back to Olympic lifting and doing workouts but am still very limited by fatigue and the weird dizziness with exertion. But I’m getting stronger every day!

At this point, I don’t know how long I’ll be taking the chemo pills. I know the plan is three cycles then we’ll hopefully do re-scans and it will show no new growth or spread. We may still do radiation in the future but I’m not sure. Then at some point in the future I have to be stable enough to not need chemo for three month in order to have the surgery to reattach my colon and get rid of this poo bag on my stomach. So I still have a big surgery and hospital stay to look forward to.

It’s a strange place to be, in all honesty. If I’d never had cancer you’d look at my scans and say I was normal and healthy (with the exception of my massive surgery and colostomy). My disease (if it’s even there) is so small it’s still not measurable. By all objective measures I’m disease free? It’s weird to say that. So I’m making myself sick with this chemo, and that feels lame and excessive. But at the same time the chemo is essentially keeping the disease dormant. This lighter chemo could potentially not be strong enough to keep the disease dormant and my next scans could show enlarged lymph nodes and new tumors and growth of those suspicious spots in my lungs. It’s a very strange place to be.

The mental battle still rages…. Don’t be afraid of what’s not there, but very likely is there. Don’t hold on to those experts words that said I would never be cured and could die within five years. Don’t grieve for what all this has cost you because better things are just ahead… I feel I have been promised a long, full, life and I still have to fight to claim those promises as fact. I still cry and feel sorry for myself frequently and battle hard against that. I have been very stable lately on God’s character which helps soooo much! When I doubt that or allow my circumstances to paint him differently than who He is, is when things get super dark and hard. Oswald Chambers said “Unless we can look the darkest, blackest fact full in the face without damaging God’s character, we do not yet know Him.” … We’ll shoot. That’s real.

I’m trying to find normalcy, routine, and make the steps to slowly live the life I see as mine. I can see it though, I know what I want it to look like… that’s a pretty big deal. I have a real vision and hope for the future. But for now I’m settling on battling with nausea and using my energy for things and people I looooove!! I’ll keep you posted!

Again.

(Written in July. Forgive the delay)

Here I am again. In the radiology waiting room with bad art and annoying television. We’re repeating imaging to look at the nodules in my lungs and lymph nodes to ensure they aren’t growing and maybe they’ve even disappeared.

About my lungs, there was this horrible window of time where it was possible I had tumors in my lungs that had grown and spread while I was off chemo preparing for and then recovering from my surgery. You might remember, my last CT scan after my surgery said three nodules in my lungs had all grown. I knew there was maybe one nodule in the very beginning but because it had been unaffected by my pre surgery chemo it had been determined it most likely wasn’t cancer since all my cancer had shrunk dramatically with chemo. This would mean we’ve got some chemo resistant cancer in my lungs! We would have to completely change the direction of future treatments! Plus just the idea of having cancer in my lungs was unnerving. I’d gotten comfortable with the whole colon, liver, lymph node tumor thing but for it to be even more progressed than that was very disheartening! There was this small hope that what the radiologist had seen was present the whole time and wasn’t new. I’d still have to mentally adjust but somehow knowing they weren’t new would comfort me.

… and a man in the waiting room just threw a magazine across the room and yelled at his wife that he’s sick of being treated like an invalid. Oh my…

My oncologist spoke with the radiologist directly and asked him. What’s the deal with these nodules? Are they new? Were they always there and just too small to be reported by the other radiologists? The good news is, yes. He saw the same nodules on previous pre surgery CT scans. But where they were unaffected by chemo they did increase in size by millimeters while I was off chemo. I asked my oncologist why hadn’t they been affected by chemo and thought to be calcium deposits not cancer.

… oh man now the man is wobbling up to a stranger and asking her to bring up the World Cup game on his phone. Oh dear…

She said some cancer is slower growing. Chemo targets rapidly dividing cells and so if a cancer isn’t dividing as quickly (growing) it’s not going to absorb the chemo as much and will be less affected. What this concludes is that my cancer is damn aggressive and very sneaky. Hiding in my lungs and lymph nodes. Tsk tsk tsk. So it was concluded I needed even more chemo, two more rounds worth with an added medication.

… my goodness, sir, the volume on your phone is very very loud…

my last post had left off with me being beyond disappointed. My body had had enough chemo. The nausea was relentless and the intestinal cramping was crippling. That’s not even mentioning the emotional and mental exhaustion of clinging to faith an hope when things turn for the worse not the better. I had been entertaining ideas of going back to work, hitting workouts hard, starting to intern at the gym, starting up with my physical therapy business, I had made plans for my birthday to take a vacation with my brothers and go camping with my friends and now they would be bulldozed by more chemo. I felt my heart starting to slip into lies of darkness and death and unfulfilled, broken promises.

Honestly, looking back, I don’t remember how I was brought back to solid ground again. I remember that I had to make a choice to believe the Lords promises… AGAIN. I had to chose to believe He is just as powerful and faithful and good intentioned. I had to chose to believe that He hadn’t forgotten about me and changed His mind. AGAIN!!! … This war is relentless.

So today I have repeat scans. I survived two more rounds of chemo, just one round shy of my pre surgery chemo and way harder on my body. I’m choosing to believe nothing’s grown since my last scan and that the blood clot in my lung is gone. Here’s to fighting for life and hope and cures! Banana barium smoothie we meet again. Bottoms up!

…. intermission…….

Got the results from my scans, everything is stable! This is good news, everything is the same size as the last scan after my surgery.

Chemo.

I woke up. I ate breakfast, sliced avocado, scrambled eggs with tomatoes and cheddar cheese, a slice of sourdough toast with appricot jam, and a slice of wheat toast (well Daves to be more specific) as a vessel for my eggs. Then we got things together and headed to my oncologist office. I was told I would have the private room for my first session so when it was offered to me by the receptionist I said yes and made myself at home. I walked past the three walled room with shoulder to shoulder arm chairs and empty IV poles. The private room had an exam table next to radiation machine and a sink, both of which were stacked with those fleece blankets that have the tied together fringe around the edges. They were real big college Christmas presents in the early 2000’s. There was a chair against the wall and a plastic reclining arm chair. Just outside the door is their phlebotomy chair where every chemo patient gets their labs checked before chemo. So I saw the parade of characters sit down and have their blood drawn. The chemo nurse, Lucene, was very nice and friendly. She took my blood relatively painlessly. She also complimented me on my port, recognizing the surgeon who put it in. “Oh yes, I would know his ports anywhere, so well placed, very clean, not a lot of bruising or swelling. It’s a good port.”

My oncologist came by and looked somewhat flustered, although always cheerful and confident. Apparently, over the weekend she was doing more research on adding a biologic chemo agent in case the genetic tests come back reporting that the tumor is sensitive to medication that biologically affect the tumor (attacking blood supply to the tumor, for example). But biological chemo in addition to standard chemo can make things too toxic, too much diarrhea (to the extent of hospitalization, for example). So if we need a biological chemo we would have to drop one of the standard chemo meds. The question this raises is what affects does that have on the tumors resistance or the efficacy of the their chemo meds without it. So she was on the phone all morning talking with specialists at UCI, City of Hope, USC, and the Mayo Clinic. Just because there isn’t anything published doesn’t mean that experiencially doctors don’t have a clue. But I’m a rare patient, the involvement of my liver, as I said before, is also a variable not taken into account during many studies. The goal of our treatment isn’t to irradicate the tumors it’s to get them to a point of resectability as quickly as possible so that too is a variable not accounted for in published studies.

Lucene came in and took the dressing off my fresh, sore, port. She brought out a weird looking thick needle with IV attachment and said’ “This goes into your port. This will hurt.” And basically jammed this needle through my skin into the aforementioned fresh, sore, port. In reality, I’m sure she just slid it into the port through my skin and did not jam it in there but I was still pretty sore. Then she flushed the line with heparin until blood showed up ensuring the line to my subclavian vein was clear. So I was hooked up to pre-chemo drips of anti-nausea medications while we wrestled with knowns and unknowns and weighed costs and benefits and swapped ideas with big deal doctors all over the place. What was amazing is that doctors were calling back my oncologist personally and discussing my case. Lucene came back in and slowed the last pre-chemo drip to allow for more time and to mix the chemo meds. There was a concensus, go with the four standard but aggressive colon cancer drugs. If we need to do a biologic in the future we can but for now let’s stick with what we know shrinks tumors fast and get me to surgery.

I haven’t decicded if it’s good or bad to have your first round of chemo be when you have a head cold. On the one hand, you feel like crap. You have the sore throat and head congestion that makes you feel groggy. On the other hand, do you feel like crap because of chemo? You can’t be sure. Are your cold symptoms just progressing or do you feel lightheaded and dizzy from chemo? There were definite chemo things happening to me like hot flashes (which are so weird! Like an instant fever coming from inside you, but my feet were freezing!) and what I fondly refer to as drunk eyes (they just can’t focus well and are slow to look from one side of the room to the other). Those are the most noteworthy, not, cold like symptoms I attribute to chemo. The rest? Who knows.

So the first drug, izotecan, hung there for two hours, making me loopy and groggy. Then the next two work in conjunction with each other, oxalyplatin and leukovorin, and are hung together, dripping at the same time over two hours. I was assured the next round would go faster. Lucene wasn’t sure how I would tolerate it so she had it drip slowly. The forth drug, 5-FU, was a pump that I would go home with which would deliver the medication over the next 48 hours. The pump was placed in a bag that I wore like a cross body purse and attached to a thin IV line still attached to my port. So basically I look like I have a small space station docked on my chest.

Hopefully we get the tests back on my tumor genes in the next couple of days. With my new cross body purse and space station on my chest I headed home. I had a super relaxing afternoon laying on my bed looking out open windows onto my backyard jungle. It wasn’t until 7pm my old friend the miserable intestinal cramping and corresponding symptoms vamped up. It was one of the worst nights I can remember 7/10 writhing moaning pain with a headache alllllll niiiiight. Goooooodness! It died down to a 4/10 by around 8 am. No nausea though so that’s great. I was instructed to keep ahead of nausea with Reglan and Zofran and keep on top of diarrhea with Imodium. Who knows how I will respond? I might even have latent fatigue and nausea show up four or five days after chemo.

I’m exhausted today, groggy, crampy, but overall doing well. I just needed a day to chill.