In A Holding Pattern

This week brought some new information. And more waiting. Ughhh, lol We met with the oncologist last week and I requested she test for tumor markers CA125 and CA19-9, which I’ve learned, through my research, are used frequently alongside the CEA number and PCI. Tho not really as predictive in terms of overall survival as the CEA (which seems to be the top dog in prediction stats) it will still give us something to measure. And since I’ve learned that this measurement concept is not really something people are familiar with or take seriously in the cancer world (WTF is right!) I’m going my own way with this one and collecting all data points I can get my hands on.

We got the results back (and a recap of current state):

CEA: 3.2 (within normal range, tho 3.0 and below is considered completely normal) Looking for 6 or below
CA19-9: 14 (within normal range) Looking for 37 or below
CA125: 57.8 (high) Looking for 30 or below
PCI number: 8 (moderate) Looking for 6 or below
CC score: 0, which is best case scenario

So again, I have to remind myself that the tumor markers are not really predictive in any way, they are just numbers to track. But the fact that one is almost double what it should be, that makes me nervous. Actually, now looking at the overall picture here, its not awful, but it gives me pause. What keeps me up at night is that if I were to take these tests, (and actually, I WANT to! I want to know what my numbers are and then have our goal be to get Andy’s as close as possible to mine) they would likely be sitting at 0. My CEA would be 0, my CA19-9 would be 0, my CA125 would be 0 (I wouldn’t have a PCI or CC score as I do not have a disease to track the coverage of or figure the completeness of removal for.) But it tells me that something is off with my husband, and that just makes me feel uneasy.

In other news, my husband went back to work this week! Yep. Day 15 post-op, he went back to work full time. He’s insane! Ha I’m not sure how he’s keeping a clear head while working, I still feel extremely unfocused and I really have to try SO HARD to get into “work mode.” Tho his work is more get-things-done-right-now type of stuff where he’s constantly putting out fires all day. Whereas mine is more strategic thinking and programmatic overhauls where I have to come up with new program lifecycles and consider governance and implementation. So I really need some focused brain power to get into all that thinking, I’m hoping this long weekend (Memorial Day) will help me clear my mind and allow me to get back into things on Tues when the work week starts again. I really need to start focusing back on my work, I have so much I need to make up for! If only my will to WANT to do good work could tell my mind and my heart to FOCUS on the work that needs to be done!

Andy was accepted into the MD Anderson program in Houston, which is AMAZING news! We also cleared these second opinions with the insurance company who said that they would pay for as many second opinions as we wanted. Also good news. I am awaiting Andy’s acceptance into the Memorial Sloan Kettering program in NY, actually, I just called our case worker who confirmed that they had received some of the paperwork and were reviewing it, but they had not received all the paperwork as of yet, so there has not been a determination. Ughhh More waiting. I am hoping to get these appointments made the same week so we can kill two birds with one stone, so to speak. Currently, our appt in Houston is the last Monday in June. That is a bit later than I wanted, but it was the first avail appt with the team we needed to see, so it is what it is. I am also, kind of, (secretly) hoping to use this as a bit of a little vacation for me and Andy. I know that we will be doing testing and that is terrible, but he will begin chemo, likely, the week after that, so he is going to feel like crap for 6 months. This might be a good way to celebrate us and how far we’ve come through this and just take a moment to have some fun before this new reality sets in again. We’ll see.

Timelines

Something the oncologist said keeps haunting me. She said Tumors don’t just grow like wildflowers, they take time, this was her explanation of why they only recommended doing a scan every 3-6 months to check for regrowth.

So I have been going over everything in my mind, like over and over and over again. I challenged her when she said that tumors don’t grow quickly, but then I recoiled a bit because, honestly, what do I know?

Here’s what I know; timelines.

March 2-6, 2019: Andy visits his friend who lives in Seattle. He had similar pain to the appendix rupturing pain during this trip. We summize that possibly his appendix perforated a bit, but then healed itself, allowing Andy to go about his normal life for a few more weeks.
March 26, 2019: Andy comes home from work in a lot of pain and goes to bed immediately. Likely the appendix ruptured this day.
March 28, 2019: Andy goes to urgent care then to the ER for an appendectomy for what they thought was appendicitis. Surgeon who removes the appendix notes that lymph-vascular invasion and perineural invasion are not identified. Appendix is sent to pathology.
April 4, 2019: Andy is notified that the pathology report showed he had appendix cancer, mucinous adenocarcinoma.
April 11th, 2019: We meet with a colorectal surgeon, Dr. Glasgow, who recommends a laparoscopic procedure with a Plan A and a Plan B. Tests are ordered to gain as much info as possible before the surgery.
April 16, 2019: Andy has a colonoscopy. They removed an extremely small, what the doctor called, pre-polyp, but his colon and the beginning of his small intestine were otherwise given a clean bill of health. Both were completely clear and without disease. His CEA score comes back as normal, 3.2.
April 26, 2019: Andy has the laparoscopy procedure to do the right colectomy, Plan A. It is found that the cancer has spread to the peritoneal wall and the small intestine. Confirmation given that Andy is in stage 4 cancer. Dr gives Andy a PCI score of 4-5. The Dr backs out and moves to Plan B, CRS+HIPEC.
May 6, 2019: CRS+HIPEC procedure. Dr finds the cancer in more locations in addition to the two already identified (unclear if this was new growth or if he just didnt see it during the laparoscopy.) As a recap, the cancer has now spread to the peritoneal wall, 2 separate areas on the small intestine, a tumor has formed in the colon and some nodules are discovered in his pelvis. Dr achieves CC0 but revises his PCI score upwards to 8.
May 16, 2019: We meet with the oncologist, Dr. Rigden, who recommends 12 rounds of systemic chemotherapy with FOLFOX and scans every 3-6 months to check for regrowth. I request they do genetic testing on the tumor itself to try to identify any specific markers that will allow us to treat it better. Also request they do bloodwork to get his current CA19-9 and CA125 tumor markers.

How much time has passed in this whole timeline? 7 weeks. Just. 7. Weeks. Okay, 11 if you count the Seattle date, but still! I mean, you tell me, does that seem like a fast growing wildflower? If you want to argue that I have no way to tell when the actual mucin emerged from the original tumor in the appendix, sure, I can buy that argument. Because technically, its true. There is no way to tell when the tumors started to grow outside the appendix, or even in the appendix itself. However, I do know that as of the colonoscopy on 4/16, Andy was given the all clear, and on 5/6 when they went back in for the HIPEC, there was a visible tumor emerging from the colon. Soooo, wildflowers? Yes. That was 3 weeks. A 3 week timeframe from when we got the clean bill of health from the colonoscopy, to the HIPEC where we saw that the colon was being invaded.

I don’t know how to make this more clear to the doctors. This is not some wait and see cancer, this is a rip your heart out, take no prisoners, dead in 2 years, fucking evil enemy that needs to be stopped! Because I’ll be damned if I’m going to sit idly by while they just wait and watch my husband die.

The First Time

Yesterday we met for the first time with an oncologist. She was recommended to us by our surgeon and is located within 15 mins of our house! AND, bonus, one of my sorority sisters from college is the lead nurse in charge of the center! That’s the good news.

The bad news is that we (and when I say we, I mean I) didn’t really learn any new information from this meeting. She basically just went over what I already knew was coming down the line. FOLFOX was the recommendation for the chemotherapy regimen and she suggested 12 rounds. Each round is approx 12-14 days, back-to-back. For those who, like me, are not well equipped in the mathematical dept of their brains, that is about 6 months. We also found out that Andy lost 20lbs. He’s down to 190lbs, from his normal 205-210lbs. Everyone keeps telling him he looks great, but to me, he looks sick. He’s lost almost all his muscle tone, his once strong arms are now a soft squishy version of what they once were. His voice has taken on this more high pitched tone. He has never been one to have an extremely low man voice, but it’s almost squeaky now. I’m not sure if that’s a symptom or if that has anything to do with it, or if its just easier to speak in a high-pitched tone because of the incision? I have no idea, but its a little irritating. I’m living life in a bit of an irritated mood lately, hoping this passes soon. Im not normally this pessimistic, but I think maybe I’m just trying to keep a realistic perspective on things. Maybe it’s a coping mechanism. Really hoping it’s temporary.

On the positive side, he finally let me grab a pic of his incision. They didn’t put in any stitches or staples, just glue on the outside, so it’s not as gnarly as it could have been. But I can see the remnants of where they used stitches to close him back up while they were doing the HIPEC, and the thought of that just makes me want to curl up in a ball and die. Besides that tho, everyone keeps telling him how good it looks, so that makes me happy!

It was good that the oncologist talked to Andy about the chemotherapy because he was not hearing it from me. Everytime I try to talk to him about what comes next or what the side effects might be or any of this, he completely shuts me down and says, Lets just wait and see what the doctor thinks. Meanwhile, I already know what she is going to say and have formulated questions because I’ll be damned if I’m going into a meeting completely unprepared for what is discussed. But that is not Andy’s approach to this. It is infuriating. He won’t listen to me, he does what he wants, and if he chooses to go blindly into this the same way he went blindly into his surgery, whatev. Again, I can’t say that his strategy is any better or worse than mine, its just an approach I would never take, and I struggle to understand it.

We did request some genotyping for the tumor itself and for Andy so we can get a better handle on some targeted therapies that may come about because the tumor shows a specific gene marker. We also learned that the tumor has been saved. Which we found disturbing and gross, but apparently, its standard practice. The tissue gets saved and stored so biopsies and testing can be run on it for future research or to see how much a future tumor has mutated from the original tumor itself. I am finding all of this extremely fascinating. It truly is remarkable what can be done right now! It sucks that it has to be done on my husband, but I’m trying to extrapolate some good here, and a newfound interest in biomedical research is one of those good things.

We’ve also decided to try to get an appointment with a team in NY instead of Chicago. The Memorial Sloan Kettering Cancer Center is where there is a doctor who studied under the doctor who pioneered the HIPEC procedure (Dr. Sugarbaker) and has a whole team of specialists who deal with appendix cancers. So we’ve switched gears a bit on our second opinions, we’ll go to MD Anderson in Houston and Sloan Kettering in NY. Now we just have to be accepted as a patient. Its all a stupid waiting game.

I hate waiting.

There’s this problem with getting Andy’s medical records transferred (faxed, lol) because the records are not avail until 10 days post-hospital release. So we can’t even send them to Houston or NY until May 21st, but we are on a bit of a time crunch because Andy is due to start chemo between 6-8 weeks post-op. So I’m targeting round 1 of chemo for the last week of June or first week in July. That gives us approx 5 weeks to get the info to the specialist teams, be accepted as a patient, schedule an appt, travel to both locations and have the full workup done in order for them to provide us with a plan of attack. Then we have to compare that plan with the plan that our St. Louis team recommends (FOLFOX, 12 rounds) and decide what to do.

What to do. What to do?

Shit Lottery Winner!

Congratulations!! You just won the shit lottery! Only this lottery is different because every human is forced to play, even though you can’t purchase a ticket, and no one wants to win.

This is the lottery that no one gets excluded from and fate is the only differentiator in who wins and who loses. It’s the only lottery that, in fact, if you win, you lose.

Sounds like fun?!

No.

The shit lottery is something, sadly, I’m very familiar with in my life. I’ve had friends who’ve been winners in this lottery and I’ve seen first hand the damage that ensues once your ticket is drawn. Some have had positive long term outcomes, some have been devastating, but either way, you lose. Not just loss of life, not in every case, but loss of time, money, relationship strength, energy, physical health, mental health, life balance, everything. Everything is thrown off.

Andy came home from the hospital on Saturday evening, 2 days ago. He was miserable at the hospital, they wouldn’t let him rest, they would come in and check vitals and poke and prod him every 2 hours during the night, so he wasn’t sleeping. Everything was looking fine, so they agreed to discharge him. This was really good news! A hospital stay that I had anticipated being 10+ days long only ended up being 6 days! I mean, that is a HUGE win for us and is a testament to how strong my husband is, and how much willingness we have to fight this thing! He’s on a shit ton of meds, oxy10, tylenol, ibuprofen, Gabapentin nerve blocker, lidocaine strips, a Lovenox shot once a day, ice and a velcro binding girdle-thing to hold him in. He has also been carrying around a pillow which he hugs in front of his body to help him feel more secure with the incision. He says he feel like his guts are falling out if he doesnt hug this pillow, so he’s happy to walk around with his friend, “Peppa Pillow” for life if he has to, lol In addition to that, his movement is very limited. He isn’t supposed to lift anything heavier than a gallon of milk and it takes him a good 2 mins to stand up from a laying or sitting position. Our 4 year old and the dog are the most unphased by all of this, lol They still want him to play and wrestle and that is hard for them to understand. We told the 4 year old that daddy has an ouchie on his tummy and the he has to rest and walk very slowly for a couple weeks. We went over the places that he could hug and touch daddy, like his head was a good place to give lots of hugs, and his arms and hands were good to touch and hug too. We’re trying our best to put all this really complicated adult stuff into terms that will resonate with him and that he’ll understand. I hope we’re doing the right thing!? Where is that damn cancer user manual when you need it!? For right now, tho, it’s lots of sleep for Andy and (ughhh) more episodes of The Office than one human should be allowed to view, lol But I imagine he’ll be doing more sleeping than watching TV in the short term.

So, what am I worried about now.

Now that he’s home and we’re on the mend, I can’t STAND not knowing what is next. Everywhere I look I have people telling me that their specialist told them that they’d just have to “wait and see” at another scan in 6 months. Well, that is just not an acceptable answer. Here’s what we know about this cancer, its aggressive. It spread to 2 organs in 4 weeks, and then to another 2 organs and 1 additional location, his pelvis, in 10 days. So, this whole idea of, Well, lets just wait and see, nope, I’m not interested in that strategy. Not for us, so let’s come up with a better, more proactive plan. I need to measure. I need something to measure against. Now, I, admittedly, am not an oncologist, or a specialist or even a doctor of any sort, but I am a smart individual and I am using all my deductive reason skills and project management skills, and any other skills that I have picked up over the course of my adult life, and have decided to approach this in the only way I know how. Measurable outcomes. Outcomes that I can track against, numbers, patterns, thickness, scans, anything that will give me some sort of measuring stick so I know where we stand at each re-measurement. I mean, I don’t feel like this is asking too much, right? When you go into a car repair shop because your tire popped, they don’t just say, Welp, why don’t you just go about using this car as you normally would and come back in 6 months so we can re-evaluate the situation. That sounds ridiculous, right? I mean, why is having cancer any different? That’s basically what they might be telling my husband to do! Here’s what I think, we know the problem, right? So lets fix this shit and be done with it! It could get 1000 times WORSE by waiting 6 months, so lets figure out a way to be proactive and get ahead of the problem before it gets out of control.

Maybe I’m projecting. After all, we technically haven’t met with our oncologist yet, so she may very well tell me that the next step is to get a scan (or bloodwork, or something) so we have a baseline knowledge of where we are before starting chemo, then, we can see where we end up. I guess I’m just nervous in reading what others experiences have been and doctors overwhelmingly taking this “wait and see” approach, it makes me nervous that we’ll be told the same. And, like I said, we’re not interested in that. However, we really are at the mercy of the doctors here. I can’t FORCE them to order tests or scans, I can’t force them to be more aggressive with treatment, I can’t force them to care as much as I do about my husband and do the things I feel are necessary. And that is terrifying.

Radioactive Pee

Day 2 post-MOAS. Yep, you read that right. Radioactive pee. Apparently, my husband is radioactive, lol Anytime someone comes in and has to handle his urine, they have to suit up, wrapping themselves in a special gown, putting on goggles, a mask, double gloves on their hands, using some special radioactive-proof gloves, and footies on their feet. They look like they could walk into Chernobyl and be just fine! Its a bit ridiculous, but whatev, lol

Today has been much better than the past couple days. Yesterday was still pretty rough. Andy was so nervous that if he moved, he would start to spasm again and he was trying to avoid that at all costs. So he basically didn’t move unless he was forced to. His speech was quiet and he spoke in short 2 word sentences the entire day. But today, I walked in around 8am and he was talking in full sentences! That was already an improvement! So I knew he was feeling a bit better, maybe better is the wrong word, he was feeling a bit more confident in the pain management plan.

They got him out of bed and walking around today, the goal is to have him walk (or, ambulate — PT term, lol) at least 5 times. The first time was rough. The PT had her work cut out for her, but she gave my husband some really good tips on how to do this “roll” thing out of bed so he could start to become more independent, and when he was finally standing up, she got him walking! We’ve learned that movement and breathing are of utmost importance right now. We’ve also learned that flexeril makes my husband EXTREMELY sleepy. Which was good for yesterday because he really just needed to make it through that day, but now — he needs to start eating and moving and taking more deep breaths. They are SO concerned about his breathing! We have this ridiculous gadget (that looks like it came from the dollar store) to help him take more deep breaths and measure how deeply he’s breathing. For reference, when I breath into it, I hit 3500. When my husband breathes into it, he barely hits the 1000 mark, usually closer to 750. So we’re working on that today too, but the flexeril is a problem because it just knocks him on his ass and he can’t work on any of the above if he’s sleeping. Its been a bit frustrating, me telling him he needs to wake up, and him saying that he can’t keep his eyes open and just needs to sleep. Ughhh We’re not giving him that drug anymore unless its at night.

How am I doing? Everyone keeps asking me that. Welp, lets recap, shall we? I learned my husband had a rare and aggressive form of cancer, which, btw, was already stage 4, about 4.5 weeks ago and since then, we have done testing, bloodwork, 3 surgeries, including 1 MASSIVE “Mother Of All Surgeries” surgery, and now we’re heading into chemotherapy, I missed my daughters prom, I missed my sons 14th birthday, I missed an opportunity with my career that may or may not present itself again, so. Hmmm. Well, I did get 7 hours of sleep in the last 3 days, so that’s something. But I have not exercised in about 4 days and that is starting to wear on my nerves. I just feel like I want to be here (at the hospital) with Andy. He just needs so much help right now and I am his advocate. He is comfortable with me being here, seeing him in this position of vulnerability, and that is oddly comforting to me. Its not very often you get the opportunity to truly help someone you love, I mean TRULY help them, and I want to be here to support him in every way I possibly can. Not to say he is helpless, but he does need help to do certain basic things. I am honored to be the one to help him.

See? I can be empathetic! I’m not always an asshole!

Today I’m researching more about the appendix cancer specialists we have been referred to. I have contacted both the Houston and the Chicago teams and am in the process of sending (faxing … yes, people still use this antiquated technology. rolls eyes) all Andy’s records to the teams to dive into. I really have no idea what to ask at this point other than to get their opinion on ongoing treatment. Our doctor here in St. Louis is very happy to consult with and work with the specialist teams to implement their recommendations, tho I’m not sure that is what the Houston or Chicago teams will want to do. I suppose those are all answers that I’ll need to get moving forward.

The kids are okay. The teenagers are more worried about what is happening in their lives than in Andy’s, and that’s okay. To be expected, really. I mean, would they actually be teenagers if they were worried about someone other than themselves 100% of the time? Would you have worried about something like this when you were a teenager? lol It’s really our 4 year old who I’m mostly concerned about. At this point, he actually has no idea that anything is wrong — and I give all the kudos to myself for that! I am trying REALLY, REALLY hard to make it seem as tho everything is okay for him. He LOVES spending time with grandma, so that’s who I’ve hooked him up with for most of the time so far. Tonight, a friend of Andy’s, who’s son also happens to be in the same preschool class as our 4 year old (and our kids also happen to be best friends) offered to take our littlest for the night and just bring him to school in the morning. I felt guilty for allowing that to happen, but I have come to realize that I need the help, and since most of my stress comes from making sure that our 4 year old is cared for, and I didn’t ask, they offered to help, I needed to allow that. Once I made that call, it was actually an amazing relief for me. It meant that I would be able to stay with Andy and not worry about being “on” as a mom to a preschooler for tonight. Which any mom can attest to how exhausting that can be.

My role now is to be here for Andy for whatever he may need. I am going to try to get some work in, maybe at least read the emails that are piling up in my inbox, or the slack messages that I have been ignoring — but I was very careful to put the right people in charge of my projects so I wouldn’t have to worry about it while I was out taking care of my husband. I’m not worried, I just want to be sure I’m still in the loop when I start to ramp back up into work again next week. I can’t actually complain about work. Not only do I love my company, but I also love what I do and I love the people I work with, both my coworkers and the customers. As I’ve mentioned before, I am extremely lucky to have the job I do. The flexibility and the understanding I’ve received all the way from the C level to anyone on any team, has been incredible — really, as it should be in situations like this, but I know I’m lucky, and I am thankful everyday for that.

Tomorrow only looks better for my husband and for our family! One day closer to having him home, one day closer to getting him well.

Plan B

Where I currently find myself, staring at Plan B, which is scheduled for Monday, May 6th. A mere 2 days from today. This plan involves a surgery which has been dubbed MOAS, the Mother Of All Surgeries. It includes a cytoreductive surgery, plus the right colectomy and any debulking that needs to be done, combined with a procedure called HIPEC. It is a 12-16 hour surgery in which the team goes in and removes all (or as much of) the visible tumors as possible. They take each organ and inspect it for tumor nodes and resect (remove) as many as possible. Then they do a targeted chemotherapy treatment directly in the abdomen. Its awful. My husbands body will literally be spread open and his insides exposed for hours. The infection rate is dismal, the opportunity for something to go wrong is high. Its terrifying. But so is having stage IV cancer. What is our other option? Do a traditional chemotherapy treatment, which, I think, through the research I’ve done, I know not to be very effective for this PMP type of cancer.

I have good days and bad days. I am trying to stay as positive as possible but my mind is consumed with this barbaric procedure that my husband will have to endure. I’ve been trying to keep busy with work, but as soon as I start something, my mind immediately comes back to this. I am so lucky to have a job that supports me and is understanding of what I’m going through. I know not everyone is as lucky as I am in terms of flexibility and I cannot imagine having someone hold job performance over your head as you’re dealing with this. Like you don’t have enough to worry about. And me? My job? My P1 team and my opportunity that I had been working for, waiting for? That was on hold. In life you have few chances to choose the right thing. To prove to yourself and to the people who you hold most dear that they are truly your priority. My family is my #1 priority and there was no question in my mind, this wasn’t a choice. When they need me most, I will be there. Everything else gets moved to the back burner. Period.

What I am yet to understand is how this thing could have spread so uncontrollably with absolutely NO physical symptoms!! I mean, how does that happen? One of the reasons we were so convinced that Plan A was going to be our path was because my husband was completely fine! I mean, if someone had stage 4 cancer, you would think they would be exhibiting some kind of symptoms, right? You see people with stage 4 cancer on their death bed, not up, frolicking around with their 4 year old and living a completely normal life. How did this get so out of control so quickly? And why did they not resect it when they first saw it at the last surgery?? All these questions roll through my head with no time left to ask them before the surgery on Monday. I didn’t even have time to get a second opinion before all this was set into motion. Now, if we pump the breaks, we basically risk the cancer spreading more prolifically and being worse — a risk I am not willing to take. I am convinced enough and have enough evidence from the research I’ve done to know that this HIPEC is our best hope, so the fact that our doctor is using this as a strategy to attack the cancer is good enough for me at this point. But I am worried. I recently connected with a facebook group for people with appendix cancers, PMP and PSM. And the thing that EVERYONE keeps telling me is to get with a specialist who knows about appendix cancers. Our doctor does not, he is not an appendix specialist, but he is the only one in our area who knows how to do HIPEC and if we end our journey with him after the HIPEC and seek out someone who is more experienced with my husbands specific cancer, we do that. But we’re sticking with him through the procedure.

But what happens after that?

I didn’t get a chance to even ask that question. Never in a million years did I think I’d be in this position, but also, never did I think that we’d have to resort to Plan B, so I never asked any of the questions around Plan B — and what comes after it. Is it a round of traditional chemo? Has that recently been found to be effective? I have no idea what’s next.