Geneticists and Supplements

Quick update. We met with the geneticist yesterday who was, simply put, awesome! Both Andy and I loved her! She was kind and caring, she told us that we were the most proactive consult she’d had in a couple months! Which, made me feel amazing — since I’m basically the only reason we’ve been proactive, lol

The information she had to offer was profoundly interesting, especially since I’ve become a bit of a medical terminology nerd, she had a lot of fun new facts to whet my appetite for this kind of data! She looked at the genetic testing we had done on the tumor itself and rattled off some specific syndromes associated with elevated markers that she’d like to include in Andy’s genetic testing panel. As I said, it was incredibly interesting for me. Here is what the testing on my husbands tumor revealed:

KRAS – Mutated, Pathogenic Exon 2 | p.G12V |c.35G>T
ERBB2 (Her2/Neu) – Negative | 0
Tumor Mutation Burden – Intermediate | 9 mutations/Mb
PTEN – Positive | 1+, 35%
PD-L1 (SP142) – Negative | 0
TP53 – Mutated, Pathogenic Exon 5 | p.P128fs | c.383delC
MYC – Amplified
Therapies listed with “Lack of Benefit”
- Level 1 category: cetuximab, panitumumab
- Level 3A category: lapatinib, pertuzumab, trastuzumab

She kept in mind the reason behind us seeking additional genetic testing on Andy himself (as opposed to on the tumor, which is what you see above) — our children. If Andy has something that can be passed down, we want to know so we can be overly proactive in treatment for that. She recommended a pretty extensive panel, a bit more than she would normally recommend because we are essentially missing half of Andy’s genetic story. My husband is adopted, and even tho we have recently (in the past 5 years) connected with his birth mother and her family, we still have no clue about his birth father. We cannot find him no matter how hard we look. So we have a big black hole for that part of his genetic past, hence the broader panel, to check for quite a bit more than the typical person who can trace family history back a couple generations on both sides of their gene pool.

She recommended an additional step for us as well, blood banking. In her words, Andy has a “really big cancer” and if this genetic testing comes back as completely normal or inconclusive, it doesnt mean that in 10-20 years, when technology has progressed even more, they won’t find something that can be the reason he got this, and possibly offer a cure or additional insight. But, we have to have his genetic code in order to do that and if the worst happens, and he is not around in 10-20 years, blood banking is the only way to continue testing when technology catches up. This seems like a morbid thing to talk about, and our geneticist made it clear that she does not take the conversation lightly and she doesnt give this option to every patient in every consult, but she was offering it to us because of the rarity of my husbands cancer and the “big-ness” of it. Take that for what it is, but we ARE planning on banking his blood. So let’s not think about it and just do it. You can never be too prepared.

On a completely unrelated topic; When we were in Houston speaking with the oncologist, he said something that really struck a cord with me, and as I’ve sat with it for a few days now, it’s really been making me think. When I asked him about things that we could do to get Andy’s body prepared for chemotherapy, or to increase the efficacy of the chemo, he said a low fat diet. Ok, well I guess that is info, lol but then he said something about supplements. I have been a bit of an organic food & supplement fanatic over the past 3 months since all this started. I was introduced to the Medical Medium and his celery juice craze, and since doing some research and listening to podcasts and reading a ton of material about plant based diets and supplements and vitamins, I have completely bought into it. So I have exponentially upped the fresh fruits and veggies I buy and have tried hard to incorporate them into my family’s diet — but especially Andy’s diet. Now, I’m not a crazy person, we still eat meat, I still cook bacon if my kids ask for it, but I have decided to switch to mostly organic produce and meat. Yes, its more expensive, but you know what is MORE expensive? A $129,000 hospital bill. Yep, $129k. That’s the bill we got from Andy’s MOAS surgery. We don’t have awesome insurance, but in times like these, THANK GOD for health insurance! I digress. In addition to my new-found organic way of life, I also have my husband on a fairly strict regimen of Juice Plus gummies and daily vitamins/supplements. They go something like this:

Andy has complied (begrudgingly at times, lol) with my request that he start taking these vitamins at least 4 weeks prior to starting chemo. I have tried to get him on board with the celery juice, which I do every morning, but he has a problem with the fact that he can’t (well, isn’t supposed to) eat or drink anything for 30mins after drinking the juice for it to be effective. So I have stopped pushing the celery juice in favor of keeping him on the supplements. So far, I have been met with only a little resistance, but he continues taking them anyway, so that works for me 🙂

Back to my point, the oncologist at MD Anderson in Houston said that there is a lot people can do to prevent cancer, but the preventative advice — where you are being proactive and hedging against getting cancer, is VERY different from the advice you should be following when you HAVE cancer. And that really resonated with me. I think far too often people think these 2 are one in the same.

Think about that. The things you do to try to be healthy, eating right, taking supplements and vitamins and living an overall decently (hopefully?) healthy life are DIFFERENT than what you can do for yourself after you are diagnosed with cancer.

Honestly, it never occurred to me that the things you would do to try to prevent cancer are very different that the things you should do once you already have cancer. These supplements, I have learned, sort of fall into the preventative world. There is physical research that 4000iu’s of D3 per day is helpful in aiding successful chemotherapy outcomes for colorectal cancer patients, but the majority of these other things are really on the wrong side of the cancer equation.

And this is where people get confused. You hear about people who refuse cancer treatment by tried and true PROVEN techniques in favor of a vegan diet or acupuncture or some alternative medicine that includes herbs and supplements to try to cure their cancer. Listen, I am not one to judge anyone, but if you are refusing treatment because you think your sister’s best friend’s uncle’s grandpa who was in Vietnam during the war and came across a healer who told him the secret to healing, and you think that secret will cure you of your cancer … you’re doing it wrong. These things WILL NOT CURE YOU. They may prevent you from getting cancer, but once you are already in that statistic, it’s a whole new ballgame.

Does that mean that I’m going to have my husband stop taking the supplements? Nope. Not at all.

Am I going to encourage him to continue taking these WHILE he is also doing chemotherapy? Yep. Yes I am. Here is the thing, none of this is going to hurt my husband while he is on chemo, and getting his body prepped to take the chemo a little bit better, even if its just a psychosomatic response, is okay with me. Plus, I’ve never got him to take a supplement before in my life, so I feel quite accomplished in my persuasive skills that I’ve been able to get him this far. 😉 You know what WILL hurt and has been proven to hinder the efficacy of chemo? You guessed it. Smoking. Now, if I could only get him to QUIT SMOKING! face-palm

Expert Opinions

We got back from our whirlwind trip to see the appendix cancer specialists last night. From St. Louis –> New York –> Houston –> St. Louis in 7 days. We were pretty exhausted yesterday, so I went to bed at 10pm, Andy stayed up and smoked a half pack of cigarettes. Gross. (Don’t EVEN get me started, ughhhh)

I digress. I am happy to report that the trip was a complete success! We did indeed get to spend some “vacation” time together, it wasnt all doctors visits and cancer talk. New York was what I was looking most forward to, but Houston was the part Andy was most excited about. My husband has family in Houston and we dont get to see them very often, so when they offered to have us stay with them while we were there, we happily accepted.

We got to New York on a Wednesday evening. Our flight was delayed a bit so we got in a bit later than we wanted, but we still had enough time to grab a .99¢ slice of pizza (something my husband really wanted to do, lol) and head to Times Square. This was Andy’s first time in NY and I really wanted to show him the sights! As you can imagine, me being Type A AF, I am a planner. If this trip had been last year, I would have had almost every second of it planned! I would have a back-up plan for any plan that didn’t pan out and I would constantly keeping track of time to make sure we were on point. But this was different. Mind you, I still needed to plan something, but I didn’t want to be over planned because I wasn’t sure how the travel and all the walking would affect my husband’s energy level. But you must know; I have a problem with last minute change and failed expectations. Something that happens to me when I plan things, is that I get disappointed when the thing I plan doesnt work out, or something happens and we miss it, or something goes wrong. I try to be flexible, honestly, I do try! I give myself pep talks and tell myself that everything will be fine if something falls through … but it just effects me negatively no matter what I do. I didn’t want this to be the case in NY, so I tried to limit my planning, but the only 2 things I planned ended up falling on the same day — and that ended up being too much. I had a fun architecture tour planned in this awesome 1920’s style yacht on the Hudson River that was scheduled at 2pm. Then, I wanted to do a nice dinner. One nice, fancy, expensive dinner in New York City, and the only reservation they had avail was at 5:30pm the same day as the architecture tour. So I booked it. I REALLY wanted to do it and since the tour was only 1.5 hours, I was sure we’d have plenty of time! I was wrong. On the way back from the architecture tour, I wanted to make a quick pit stop at the 9/11 Memorial. It was one of the most impactful things I had ever seen and I wanted to share that with Andy. But my husband wanted to head back to the hotel to rest a bit before dinner, and I pushed him too far by forcing him into sightseeing. We got back to the hotel with only 5 mins to get ready for our fancy, expensive dinner. I was fine, luckily, I was pretty much ready except for my quick change of clothes, but Andy was exhausted even before we got back to the hotel. He was almost falling asleep at dinner, and me? I wanted to go out for a night on the town! I was dressed up all cute and had curls in my hair and I was in New York! I wanted to have a fun night!

Nope, not in the cards.

When I suggested to my husband that we head to the bar area of the restaurant after dinner for a few more drinks, he declined. It was 7pm. I was a bit perturbed even though I knew he was exhausted, even though I knew he was tired, even though I knew he was at the end of his rope. I still wanted to have fun. For me, this night was not over! I didn’t want it to be over. But we went back to the hotel anyway, he laid in bed, I changed out of my fancy dress and decided I was going to go back out. We had passed an outdoor bar gazebo thing on our way back to the hotel so I decided I was going to go there (by myself) and just sit and have a glass (or 3) of wine. So I did. I sat there fuming because of the situation. I was pissed off at cancer. I was pissed off that this had happened to my husband and wiped the person who he used to be out of existence. I wasnt asking for much, just a night out with the man I love, and cancer took that away from me. Fuck cancer.

The next day we met with the oncologist at Memorial Sloan Kettering. This was the moment I had been waiting for! What would she say? What would she suggest? What more in-depth and useful information could she offer to us? After all, she WAS the expert in this specialty area! The appendix cancer specialist whom I researched and sought out especially for her guidance. So, what did she say? “12 rounds, FOLFOX chemotherapy, with follow up CT scans every 3-6 months” … and I was a bit dumbfounded. She literally, almost word for word, echoed what our team in St. Louis had already recommended. No additional insight, no useful tidbits that could help us unearth new information, no new medically advanced scanning equipment which could offer us a more proactive view into tumor growth, no new treatments, no new advice, no new conversation starters, just the same thing we had already heard. The. Same. Thing.

It was a bit anticlimactic.

So when we got to MD Anderson in Houston and spoke with the expert there and heard the exact same thing, I mean, I guess the confirmation is a good thing? But I don’t know. I suppose it’s better than the alternative, right? I mean, what if we had heard 3 opposite opinions and were offered 3 different courses for treatment — and then it would’ve been up to US to choose the one we wanted! Yikes! I mean, that would have been a nightmare! So this is good.

So here we sit now. The team at MD Anderson did not offer us a consultative option, which means that if we wanted them to provide anything other than a second opinion, we’d have to go through them and only them. The oncologist at Sloan Kettering was much more willing to work with our St. Louis team to check over Andy’s scans and suggest additional treatment options if this cancer returned. She will provide her expertise and consult with our boots on the ground team here, so that is who we’ll be using moving forward. Now its just all about getting Andy scheduled for all the pre-chemo stuff that needs to be done. He needs updated blood work to check his CEA and tumor markers (CA19-9 and CA125) and he needs a new CT scan to provide a baseline for future scans to check against for regrowth of the tumors. He needs to get the chemo port installed which is an outpatient surgical procedure. Then we need to schedule his first chemotherapy cycle. Oh man. Typing that just gave me chills. I don’t want him to have to go through this, but all the experts said that there is a very good chance that this is in his bloodstream and the systemic chemo should wipe it out. But he will never be “cured” of this. The best we can hope for is NED (No Evidence of Disease.) Sometimes people go decades being NED where it comes back after 15 or 20 years. Point is, this is never something we’ll be rid of. It will always be in his body, it will always be something I’ll worry about.

But for now, at least we have a very, Very, VERY clear path forward and I am hopeful that all my worrying will be for nothing because Andy will push through chemo, like he did with the surgery, with very little side effects and a quick recovery period! No, he’s not 100% yet, hell, he’s only 7 weeks post-op at this point! But he’s definitely 80-85% and while I may want him to be back at 100%, I know that is ridiculous. We’ll get through the next 6 months of chemo and we’ll hopefully be done with this! I hope this blog comes to a quick close 🙂

Up In Smoke

You know what I despise? Cigarettes. I hate smoking, almost as much as I hate waiting. I hate the way it smells, I hate the way it lingers on your body and breath, I hate the way it makes you feel. It has been proven to give you cancer. Likely not good for someone who already HAS cancer. It’s just BAAAAAD for you! I hate it. I hate that my husband is a smoker. Not a legit smoker, he doesnt wake up in the morning and smoke, he doesnt smoke after he eats, no, not that kind of smoker. He only smokes when he’s drinking and he will only drink by himself, alone, at night, thats his m.o. But he smokes. Its disgusting. He’ll watch the game (football, baseball, hockey, take your pick) on the replay so he can fast forward through the commercials and boring parts, drink some beers and smoke a half pack of cigarettes. Gross.

So when all this started way back in late March, he quit smoking. He told me he didnt want to do anything to give this cancer any more fuel than it already had, and smoking certainly fell into that category. I was elated! I had been wanting him to quit smoking for a decade! He had tried before, many times, but was unsuccessful. So for me, the ONE good thing that came out of all this terribleness, the ONE good thing, was the fact that he had finally seen the light and quit smoking. It was an amazing relief for me to be rid of that worry in my life.

Until this weekend.

Come on. Are you fucking kidding me?

One of my best friends, Sarah from San Francisco, sent me this amazing box of thoughtful things that she loves and that she thought I would love too! Just little things that she hoped would make my stress levels a bit lower. It had popcorn, chocolate, some yummy granola, a candle, a bath bomb, some stones that she found for healing, and the sweetest handwritten card. I mean, adorable! I paired it with a nice bottle of wine 😉

So on Friday, I go to light the candle my friend had sent me. I reach for the lighter which I just put in our secondary junk drawer in the kitchen (yes, we have a primary junk drawer and a secondary junk drawer … doesnt everyone?) I knew the lighter was in there because I had just gone through and organized it the day before, so I KNEW what I had in there. The night before was a playoff game for the Stanley Cup. Our hometown team, the Blues, were playing and this is a HUGE deal in St. Louis since the Blues have never won a Stanley Cup before. I’m not a hockey fan, but when your team is in the playoffs, you pay attention.

Andy had taken our 4 year old to the circus that night, which he bought tickets for weeks ago, before we knew when the playoffs would be or even if the Blues would make it. Regardless, he went to the circus with the kiddo instead of watching the Blues game. They got home late and he had sent me a text prior to getting home:

Whatever you do, please dont tell me anything about the Blues game. I’m going to come in and put the boy to bed and chill the fuck out. Everything in the last hour has not been set up stellar with a tired boy

Ok, not a problem. I was already in bed anyway when they got home around 10:30pm. He did exactly as he said. He came home, got our 4 year old in bed, came into our bedroom, gave me a kiss, said “Love you” and closed the door behind him as he left the room. Something about the way he left had me thinking that smoking was a possibility that night, but I brushed it off and told myself that he was smarter than that, and besides, why would he throw 10 weeks of no smoking out the window? Then I went to bed.

I woke up the next morning and he was not in bed next to me. This is what he would do when he smoked. He would sleep on the couch, either in the family room or in the basement, after he showered the smoke smell off. He knew I could smell it as soon as he would walk into the bedroom, so he wouldn’t sleep in the same room as me. He knows I hate it when he smokes, but that had never stopped him before — I thought being diagnosed with stage 4 cancer might stop him, but I was wrong about that too.

I knew exactly what was going on when I woke up that morning, but again, I brushed it aside thinking I had to be wrong. Fast forward to me lighting the candle. I reach into the drawer where I KNEW I had put the lighter and it wasnt there. Andy was on the couch so I asked, hey, do you know where the lighter is? He said, yes, I do. Then I asked the question. Are you smoking again? He said, yes. I asked why and what could he have possibly been thinking. I told him that he had thrown away 10 weeks of not smoking, and for what? He couldnt give me a good reason. I told him that we needed to talk about this. I told him that I was taking this as a personal slight against me and against EVERYONE who was sending him well wishes and healing prayers. A personal slight against everyone who had donated money to us and had sent us cards and made us meals and worried about his condition and his health. I asked him if he knew how anxious I had been about everything and now he’s adding yet ANOTHER thing to the list for me to worry about?! Fuck that. I mean, when one is diagnosed with cancer, rare or not, and people are giving you their sympathy and help you in all these amazing ways, it’s almost an unspoken rule that you, as the one with cancer, must ALSO do everything in your power to not let the cancer grow or spread more…or do things to give yourself more cancer. You are obligated to do EVERYTHING you can to attempt to prevent the cancer from growing any more, this doesn’t only include things like seeking out experts to help and doing surgery and chemotherapy, no. This also includes things such as dietary changes, lifestyle changes (such as more exercise or meditation.) It includes taking vitamins that might help stymie the growth or help with prevention of symptoms that you may have. It includes avoiding things such as smoking which might feed the current cancer or cause a completely different cancer to grow!! Ughhhh Does he remember when he told me that he was not going to do anything that would possibly give this cancer a leg up? He owes an apology to literally everyone, especially to me. I was livid, but mostly I was disappointed and just utterly disgusted that he would do this! Disgusted. I felt physically ill, like I was legit going to throw up. So I stopped the conversation and went upstairs to our bedroom. I have not spoken a single word to him since. We have not slept in the same room nor have we communicated in any way, scratch that, I did leave him a sticky note on a piece of mail that came, in which a claim had been denied by the insurance company, telling him to look into it and figure out a way to push it through. That has been the entirety of our communication since Friday. Its Sunday.

It sucks to feel this way. I was SO looking forward to this weekend and now its just been crap. I don’t want to be mad at him, but I cannot look at him without this feeling of disgust coming over me. He has let down THOUSANDS of people with his disgusting habit. But mostly me, mostly his kids. Looks like he doesn’t care tho. I thought we were over this, I thought we were on the same page, but clearly he’s too far past his surgery now and is feeling invincible again. Funny how sometimes, the further you get from an incident, the pain and conviction you had in that moment seems to fade. Not for me. It’s frustrating and impossibly exhausting watching him make choices that are bad for him. And I’m powerless to stop it. He needs to apologize for this, hell, he needs to apologize to the hoards of people who he’s let down, but he can start with me.

UPDATE: It’s Tuesday, and I had a lot of time (while we were both doing our best not to talk to or look at each other over the weekend) to reflect back on why this set me off so much. So last night, I asked if we could talk about it. My biggest problem with this whole situation (beyond the fact that I just really, really, REALLY want my husband to quit smoking) is that it seems to me that he doesnt care as much about himself as others care about him. His actions reflect this, and I think that is really the root of my frustration with this whole blow up of mine. It infuriates me. However, we did talk about it and came to an understanding, which is better than nothing, but still not how I wanted this argument to end. I didn’t get my apology, I didnt get any sort of agreement from him that he would quit smoking (again), but I did get an amazing hug, and I guess thats something. I’ll hold on to that.