Our Cancer Journey
I’m sharing this publically because I believe in brutal honesty and transparency to help improve things for other people who are dealing with a healthcare crisis.
I created some cancer diagnosis and treatment worksheets you can download for free here inspired by our horrible healthcare experience.
How this all started. Feb 9, 2017
I want to start by saying that I didn’t know that cancer could be like this. I always thought it was a slow process. Three weeks ago I would see Lucas wake up at 5am and cycle for 30 minutes. Now I push him in a wheelchair because it’s too painful for him to walk. Needless to say we are in shock and have moments where we are waiting to wake up from this nightmare.
Here is the timeline of events:
November 2016
Lucas develops some stomach upset and diarrhea but waits for it to stop on it’s own.
December 2016
The holidays! We went to Hawaii and although Lucas still had stomach issues, it didn’t stop him from snorkeling, swimming, etc.
January 9th, 2017
Lucas had a scheduled physical with his primary care doctor for his insurance. The doctor said Lucas was super healthy! He had the blood pressure of a 19 year old! Cholesterol was good. She prescribed an antibiotic to address his stomach issues.
January 20th, 2017
The antibiotics didn’t seem to be working, so Lucas messaged his primary care doctor for a referral to a GI specialist. At his GI appointment they did a stool sample and found an overgrowth of H-pylori bacteria. She prescribed a hefty dose of 4 antibiotics that he was to start immediately. Lucas started to have pain after starting the medication. The GI recommended an ultrasound.
January 25th, 2017
Lucas had a ultrasound on his stomach area and a mass on his liver was noticed. The doctor requested a CT scan as a follow up. We get referred to a liver doctor (doctor count: 3)
January 27th, 2017
We meet with the hepatologist (liver doctor) and she says the results of the CT scan look consistent with cancer or lymphoma (read: cancer *or* cancer). She schedules a biopsy to diagnose the tumor. She also prescribes some pain medication to help relieve some of the abdominal pain.
January 28th & 29th, 2017
This weekend Lucas’ pain increased dramatically. The pain medication barely worked. This was the second week with barely any sleep and constantly waking up from pain.
January 30th, 2017
Today Lucas’ biopsy is scheduled, but it doesn’t happen because he’s in too much pain. Instead he’s admitted to the hospital.
January 31st, 2017
Despite his biopsy being rescheduled, the hospital fucks up and he’s stuck in the hospital waiting yet another day in pain to have the biopsy.
February 1st, 2017
Lucas finally has the biopsy on his liver tumor but stays in the hospital to help manage pain.
February 2nd, 2017
Lucas is released from the hospital with some take home pain medication but no results from the biopsy yet.
February 3rd, 2017
We meet again in the hepatologist’s office for the results of the biopsy. She tells us that it’s neuroendocrine cancer but the primary site of the cancer is still unknown. She orders a PET scan, an endoscopy and colonoscopy for the following week. She refers us to an oncologist and she also has us meet with a liver transplant surgeon who we schedule surgery to remove the tumor the following week (doctor count: 5). When we meet with the surgeon, he shows us the images from the CT scan and we see how large the tumor on his liver is. It’s the size of a fist. It’s pushing on all his organs and his liver’s right lobe has grown to compensate for the tumor.
February 4th-5th, 2017
Another rough weekend with a ton of pain. Lucas is starting to have trouble walking due to all the pain in his abdomen. The rest of his muscles are seizing up. At the same time he has to do a 24 hour urine collection and can’t eat or drink anything before the PET scan.
February 6th, 2017
Lucas has his PET scan which is a CT scan with radioactive sugar injected into his body that will adhere to any tumors. We also get an EKG. The EKG comes back abnormal so we have to see a cardiologist (doctor count: 6). No eating or drinking after breakfast and he has to do a torturous bowel preparation for the colonoscopy in the evening and the next morning.
February 7th, 2017
Lucas finishes his prep for the colonoscopy and we head to the hospital. He gets prepped for surgery and it’s delayed for an hour. He hasn’t had anything to eat or drink and the pain medication makes his mouth extremely dry. He’s in incredible pain and can’t have any water. We meet the doctor who will be doing the procedures and he adds one more to the mix: an endoscopic ultrasound. Finally we see the anesthesiologist and they put him under for the endoscopy and colonoscopy. In the recovery room we meet with the doctor that did the procedures (doctor count: 7) and he says the colon, stomach and esophagus all look healthy. He did notice something abnormal on the pancreas and biopsied it.
February 8th, 2017
We head back to RUSH in the city to meet with the cardiologist. Turns out Lucas has a genetic heart defect that created a false positive on the EKG. The doctor clears him for surgery the next day. In the afternoon, we meet with the oncologist. He keeps us waiting an hour and then it’s clear he hasn’t really reviewed Lucas’ case and doesn’t really know what we are meeting for. It’s very awkward for a number of reasons, one of which is mentioning that Steve Jobs had the exact same rare cancer: pancreatic neuroendocrine cancer. We leave feeling dissatisfied but are excited about surgery the next day since it will relieve a ton of pain for Lucas. As we are winding down the evening at about 7pm, we each get a voicemail from the surgeon who is removing the tumor the next day. He says the results of the pancreas biopsy is back and that it is the primary site of the cancer. Additionally, the cancer is growing rapidly (mitotic index at 60%) and the best thing to do is postpone the surgery and instead start chemotherapy immediately. Instead of having the tumor removed he will install a port into Lucas’ artery that will make it more efficient to deliver the chemo.
February 9th, 2017
Lucas has surgery for the port. Since the tumor is not being removed, we have to figure out a way to manage his pain. He meets with a doctor (doctor count: 8) from the pain clinic who discusses options with him. One of which is a nerve block in his chest where they suspect a lot of his pain is coming from. He is admitted to the hospital again so they can manage his pain overnight and get him in line for the procedure the next day. We also schedule his chemotherapy (pending insurance approval) for Monday at 8:30am.
And that’s where we are at.
2nd to last procedure (for awhile). Feb 12, 2017
On Friday afternoon Lucas had a celiac plexus nerve block diagnostic where they inject a local anesthetic into a bundle of nerves to help reduce his pain. Thankfully it was a success and he will have the more permanent procedure (it lasts 6 months to a year. Until whenever the nerves grow back) next week. Unfortunately, he had to spend another night in the hospital so they could monitor him post-procedure which meant another night of no sleep thanks to being hooked up with tubes, beeping, nurse interruptions and a shitty bed design that doesn’t let you sleep on your side (the only position it’s comfortable to sleep in.)
In total, these are all the procedures Lucas had this week:
-PET scan
-EKG & follow up bloodwork
-Endoscopy
-Colonoscopy
-Biopsies of the pancreas
-Power Port surgery
-Diagnostic nerve block
He is a fucking champion for getting through all of this.
Let’s melt some tumors! Feb 12, 2017
So according to a new doctor (doctor count: 10) Lucas will have some fast pain relief as soon as he starts chemo on Monday morning. The doctor said the tumors would quickly “melt away” which sounds better than just “shrinking” them. It’s hard to know how much relief he will get so we are still going to have the more permanent nerve block procedure just in case. Here’s hoping tomorrow will be a good day.
1st round chemo complete. Feb 16, 2017
Lucas completed his first round of chemo yesterday. He’s back at home and is recovering from all the poking and prodding. Thank you to everyone for the messages of support!
Numbers down significantly (this is good news!) Feb 28, 2017
Two weeks after the first round of chemo, Lucas’ blood test results are looking great. The major indicators we are watching are down by half from the baseline test results on 2/8.
In general Lucas is feeling better. He is in less pain but still has some nausea. He also started physical therapy to help rebuild strength. In general our family is all getting used to this new normal and things are getting a little bit easier.
The next round of chemo starts at the end of next week so let’s hope the numbers keep going down at this fast rate.
We have also reached out to the Dana-Farber Cancer Institute in Boston for a second opinion as they are one of the specialists in this type of cancer.
For those interested in the type of rare cancer Lucas has, I’ve included some helpful links below:
https://www.youtube.com/watch?v=9U6q78a1xaQ&feature=youtu.be
I’m not going to lie… Mar 5, 2017
this experience is awful. It’s awful to tell a six year old that his father has cancer. It’s awful to watch Lucas vomit up half of the few tablespoons of food that he managed to eat a few hours earlier. It’s awful to see him in so much pain and discomfort. It’s now been almost a month watching all of this and it’s all really, really awful.
He starts his second round of chemo on Wednesday and we’re hoping he will feel better since I’m not sure he can feel any worse.
Please keep the cards and emails coming. Hearing from friends & family is keeping all of our spirits up.
Our mailing address is: (redacted)
you can reach lucas directly at: (redacted)
Send jokes. Send cute bulldog photos. Remind him of crazy shit he did in college. Just no food :)
Tomorrow: Chemo Round 2. Mar 7, 2017
Tomorrow is the first of a 3-day chemo round. Lucas has not been feeling great so we are hopeful the blast of chemo shrinks the tumors and allows his body to relax a bit.
Thanks for all the messages of hope from everyone. I have days (and moments) where I feel frustrated, angry, and sad but try to stay hopeful. A good friend sent a care package full of magical unicorn gifts and we have adopted them as our mascot. We could use some magic tomorrow.
Ups and Downs and Ups. Mar 10, 2017
Lucas is currently in his third and last day of his 2nd chemo round. Test results going into day one weren’t great. His liver functions were high which could indicate infection/damaged tissue, etc. He had a bad reaction to some medication they gave him to help with nausea and because of his liver issues, is taking a long time to filter out of his system. The medication left him lethargic, with difficulty communicating and with some confusion. He had a CT scan of his head this am to make sure there was nothing wrong with his brain.
Last night he was feeling a bit more alert, ate something. Sadly, he’s still in pain and is having trouble standing up & walking without support. He’s a stubborn MF though and doesn’t like to accept help.
We got our second opinion from Dana Farber and they reinforced that the cis/etop combo he is on for chemo is the right one. They also recommended we pursue a DNA test on his tumor so we can see if he is eligible for a clinical trial.
I was enthusiastic going into this round of chemo, hoping we would shrink his tumors and lessen his pain. I thought that things could only get better and not worse and sadly this week proved me wrong. This is a fucked up disease. You think you are doing the right thing and have gained a bit of control over it and it slaps you in the face.
On a brighter note, I got Lucas this t-shirt which made him laugh.
We are trying to get him into see Dr. Eric Liu who is a specialist in NET cancer and is a part of the Rocky Mountain Cancer Center in Denver, CO. Although we feel we are on the right chemo drug path, we are hoping there is something else he can do.
Brain all clear. Mar 10, 2017
Just didn’t want to leave you all hanging.
Phew.
Another update (I’m too tired to think of a better title) Mar 15, 2017
Today Lucas starts radiation to help reduce his liver tumor size and hopefully his pain. He’s been on steroids the last few days to help give him a boost but they may have caused more problems than helped. He also has some bad swelling in his legs and feet. Thankfully he is seeing palliative care today to help look across ALL his symptoms and ALL his medication to make things easier for him. I always thought oncologists did that…but I guess not. I am learning a lot of things in this process that really piss me off about healthcare. Anyhow…
We are still trying to get him into Denver to see Dr. Liu but waiting on records management to share his files (not sure why in this day and age it takes so damn long but apparently it does.) We are also looking into MD Anderson as there is another specialist there who helped developed a drug that seems successful for certain types of tumors (see article below):
https://www.mdanderson.org/publications/conquest/summer-2013/pancreatic-neuroendocrine-tumor.html
Marti has been staying with us to help with Ethan, chores, Lucas, everything. She has been a great help and we are all thankful she is here. The stress apparently has gotten to me because last night while trying to help Lucas I fainted. Thankfully I realized I was going to faint and laid down so I didn’t hit my head or anything. I feel a bit off today but am planning on taking a nap later. It really is true that you have to put the oxygen mask on yourself before helping others. Easier said than done though.
Ethan is going to start seeing a therapist today to help him deal with the situation. It’s tough to help him through it because we are all so stressed and tired ourselves so I think a neutral third party will really help him.
That’s the latest. I’ll do another update in a few days.
Back to the Hospital. Mar 15, 2017
The doctor noticed fluid in his lungs so Lucas is on his way to the ER now and will be admitted overnight.
Just when you think you can’t take any more, you get more heaped on you. I really don’t know how Lucas has the strength to get through all of these symptoms and problems. I was hoping today would be a relief but sadly no one gets any relief right now.
An Eventful Evening. Mar 16, 2017
Marti took Lucas to the downtown Rush ER last night. In addition to fluid in his lungs, they found he had a blood clot. The docs said his coronary artery was completely blocked and they placed a stent to keep it open.
He’s resting well now and will be in the hospital for a few days to recover and monitored.
A Few Days at the Hospital. Mar 17, 2017
Lucas is recovering from the heart attack very well. So well that the cardiologists say he can be released but the oncologists want to keep him for an extra day or so to monitor him.
In the good news department, he had NO pain meds last night or today thus far. This may be from residual anesthesia but I’m hoping it’s from a smaller liver tumor.
His cancer treatment may change because of this heart attack event. It’s possible one of the chemo drugs contributed to it so we are waiting to hear if he will continue chemo and radiation.
Thanks for all the kind messages, mail, and offers of support from everyone. It really means a lot to both of us.
On the Oncology Floor. Mar 18, 2017
Lucas was moved last night from the cardiology floor to the oncology floor. He will likely be in the hospital over the next day or so. He was given a diuretic to help with the fluid build up in his legs. He didn’t have pain meds again last night so here’s hoping it’s a result of the chemo shrinking the tumors.
Thanks to our amazing hepatology doctor, lucas’ tumor biopsy is on its way to be DNA tested. This could mean we would be eligible for a clinical trial and/or drugs that are more tailored to his type of NET cancer. On the downside, it could mean that it’s genetic and that Ethan has a chance of inheriting it. We’ll wait and see.
I was reflecting yesterday at the hospital about how much has changed since we were first there. How steep the learning curve was and how overwhelming the sadness was. I’m in such a different place now. I’m more confident about what is going on and what needs to happen, in discerning good care from bad care, and am more hopeful. Here’s hoping that I look back at this journal entry in a few weeks and feel even better.
Dialysis. Mar 19, 2017
the docs think that when they needed to do the angiogram, the contrast medium shocked the kidneys. He is going on dialysis tonight to give his kidneys a break and get things back to normal.
my chest is tight and my stomach is in a big knot from not being at the hospital the last two days. he’s in good hands but i feel anxious and out of sorts waiting for news. it’s hard to hold all of this back from ethan. i have to take the dogs out to get my crying in. i’m frustrated, angry and sad all at the same time and have no place to put all those emotions.
Control Freak. Mar 20, 2017
Well, Lucas pulled the dialysis port out of his neck last night so he didn’t get much. He has some confusion because of all the toxins that aren’t getting out of his body fast enough and he gets grabby. They are planning another port procedure this am and have his hands tied down so he doesn’t pull anything else out. It sucks because his kidneys need a break and now we have to wait for rounds to know what the fuck is going on. Some researchers came in wanting to take a stool sample and I politely said GTFO and next time read his file before coming in the room.
Really fucking fed up with teaching hospitals…
Family Care Meeting. Mar 20, 2017
Well, I complained enough that the palliative care doc (who was great btw) suggested we get a family care meeting with all of Lucas’ doctors to answer my questions and form a plan. This will hopefully happen tomorrow. In the meantime, Lucas finally got a replacement catheter and got dialysis started. An hour after he got his catheter placed I asked the nurse why dialysis hadn’t started yet and she gave me some response about a schedule. I replied that the longer we wait, the more the kidneys are stressed and STRANGELY ENOUGH five minutes later the dialysis machine was rolled into the room.
I felt exhausted after a full day of sitting in that room, asking questions and trying to not cry in front of lucas. Thankfully Mike and Jake, Lucas’ friends from college were visiting and lifted my mood sharing stories and pictures and just catching up. I feel so lucky to become a part of Lucas’ life. I’ve gained so many great friends and family members. It gave me even more motivation to make sure he is getting the best care possible. I will fight forever for him.
Marti is with him tonight (and always) and said he rested well and was eating & drinking. Here’s hoping his kidneys are refreshed and he is more alert tomorrow. Then we can begin the process of building him back up strength-wise.
Today was rough but also filled with hope & love.
No Family Care Meeting. Mar 21, 2017
Well, we changed course again. Palliative care decided that a family meeting wasn’t necessary because the care goals are the same — we are just in need of information.
Tom, the bearded doctor who was here from the first time we came to the hospital 6 weeks ago, agreed to help find a specialist and he and the palliative care doc agreed Rush probably wasn’t the best place. That said, he’s unable to travel so we needed to find someone local. There aren’t specialists in Chicago but we found the closest person to one at Northwestern and are in the process of getting him transferred to their cancer center. His needs are so specialized and all related to the cancer so it makes sense that he is in a dedicated cancer center.
Lucas was a little less confused today, still having trouble breathing but did a little bed-based PT which was good.
It’s amazing how reluctant doctors are to transfer to a different hospital. I don’t think it’s should be as awkward of a conversation as they made it. Yes, those other hospitals are competitors, but they also have specialties that we need and it’s not personal.
This decision will not only be better for lucas but much easier on us logistically since the cancer center is down the street from Marti’s condo.
The Heart Attack. Mar 22, 2017
Since it happened I have been asking every doc whether there was a relationship between the cancer/chemo and the heart attack. Some doctors told me straight up “no way. it was a widowmaker that could have happened at any time”
The reason why I’m concerned is that Lucas’ third chemo treatment is coming soon (pending dialysis) and I don’t really want anything heart related to happen again obviously.
Yesterday I ONCE AGAIN asked the cardiologists and they said they would do some research on the relationship between his particular chemo drugs and heart attacks.
I got a call last night from the head cardiologist (who is an amazing woman and who has consistently taken the time to listen and ask about our situation). She said yes, there is a relationship between the chemo drugs and heart attacks typically after the SECOND round of chemo (which is exactly when it happened to lucas). It’s a small percentage and because his type of cancer is rare there aren’t many studies. Anyhow, I felt like all my questions and research finally paid off. When we spoke about possibly changing course treatment-wise, she said that in a way it doesn’t matter because since he’s had this episode everyone will be more cautious of his heart issue.
Lucas certainly dodged a bullet and Rush cardiologists saved his life, but again, if we had been in a comprehensive cancer center with different disciplines working as a team, would this have happened? Would we at least have known the risks beforehand? Who is to say. The knowledge we are armed with now has helped us make the decision to transfer him and makes me slightly less nervous.
(Funny side note: yesterday when the head cardiologist came into the room to check on lucas she asked him how he was doing and in his confused state he asked her what music she was into. They actually talked about music back and forth for a bit and it was nice to see a small moment of normalcy)
I can’t reply to your comments so I’ll reply here:
We are not sure when he will be transferred. It’s tricky because he’s still in the ICU and if transferred it happens from ICU to ICU. If he moves to a different floor he can transfer directly to the cancer center. Today Marti and I will be working on that. We are trying to time it so that his new oncologists are up to speed before his next round of chemo was scheduled (on the 31st
If you want to visit, now is not a great time. He’s confused, has trouble speaking (because his lungs still have fluid) and really needs his rest. He also needs some more dialysis time to get rid of the confusion. Send me an email at (redacted) if you want to visit and I can tell you the current status.
Yes, you are more than welcome to share this website with other friends of Lucas. I did a crappy job sharing because I didn’t have all the email addresses. At this point the cat is out of the bag and most people know he has cancer, they may not know how bad his situation is.
The Transfer Process Begins. Mar 22, 2017
Lucas has moved from the ICU to the main inpatient floor at Rush. He has to stay there 24hrs before he can be transferred to Northwestern and we have to make sure they have a bed available. But the process has begun.
Four Nice Things. Mar 22, 2017
Four nice things happened today that I don’t want to forget so I’m writing them here:
1. Palliative care doctor told Lucas he was lucky to be married to me. This doc (Bynes) is a great guy (not just because he said that) but because he listened to me and tried to help by initiating a family meeting. When we told him we were leaving Rush that’s when he said that to Lucas. He didn’t make me feel bad for leaving or try to keep us there. He agreed it was the right decision and helped me feel more confident.
2. Ethan’s therapist asked me about what was going on with Lucas. At the previous week’s appointment Lucas was on his was to the ER. He is a sweet older man and has helped Ethan immensely and helped Lucas and I when he was first diagnosed. While talking to him I started to cry. He reached out and stroked my hair like a parent. It was unexpected but was exactly what I needed in that moment. Such a genuine, kind, supportive connection with someone.
3. A teenage girl in the waiting room came up to me and said she overheard the doctor and I speaking about what I was going through and said she was very sorry. I was really touched at how much courage that took, something I would have never done at her age.
4. Earlier in the day one of the nurse’s aids noticed I was crying and immediately handed me a box of tissues and then put her arms around me.
I’m self conscious in this position: the young(ish) wife whose husband is very ill and has a young child at home. Normally these types of situations make me uncomfortable. I don’t like being the center of attention and I don’t like people feeling sorry for me and I don’t like asking for help. Today I let my guard down a bit and embraced these moments and all of them gave me a bit of much needed comfort.
A moment of happiness. Mar 23, 2017
Lucas gave me permission to share this pic. He is still a bit confused and short of breath but it’s easier to understand him and he has lucid moments. On the upswing.
For those who I haven’t texted or emailed back, I apologize. I have received all your messages. It’s just that being at the hospital is a full time job now and I’m behind on everything including communication.
Fucking Awesome Day. Mar 23, 2017
Lucas is still a bit confused and doesn’t have much of an appetite but kidneys are working (didn’t do dialysis today but will tomorrow).
At one point today he took my hand, kissed it and said “You are fucking awesome.” *swoon*
He might have said it out of confusion but I’ll take what I can get.
Quick Visit With E. Mar 23, 2017
Ethan saw Lucas today. It’s been about a week. I prepared him and said that dad’s brain is healing and may not work right sometimes. When Ethan saw him he immediately told him how glad he was so see him and how sorry he was that he was in the hospital. It was a bittersweet visit to witness.
#postitsforlucas. Mar 24, 2017
Lucas’ friends and colleagues have started a hashtag on instagram and are sending him drawings. Very sweet of them to start this and he loved seeing them. Keep them coming!
Tough Day. Mar 24, 2017
Today was really hard on Marti & I. The plan was to start a 3-hour dialysis session. As he was being hooked up he started having trouble breathing and then his heart rate dropped to 38bpm. A ton of people rushed into the room. I had to turn to the corner because I was too scared to watch. I didn’t want Lucas to see me scared. They had to replace his catheter since it wasn’t working and now it’s bleeding a bit because he’s still on blood thinners. Scary day. He’s back in the room waiting to start dialysis again. Let’s hope tomorrow is better.
Back in the ICU. Mar 25, 2017
Apparently his heart rate dropped two more times like it did before and they’ve moved him back to the ICU. They started low flow dialysis there.
The Fighter. Mar 25, 2017
Last night was rough. Marti didn’t get much sleep. His heart rate dropped a few more times and when it happens it’s terrifying. I only saw it once but it triggered me to have a panic attack.
When I got to the hospital this am we spoke with palliative care about having a family meeting to talk about what Lucas wants to do. He says at times that he’s tired of all of it — the cables, the pain, being confined to the bed, etc. We asked palliative to ready a place in hospice just in case. We were all ready for the worst.
When we spoke to Lucas, he said he wanted to keep going. The rest of the day seemed to be a good one. He ate a little (still not enough though because the cancer is always one step ahead) but had much less confusion. Logan and JD spent the day with him and let Marti & I rest.
Sometimes the shock of this is all too much. The doctors that come in and out just see him as this very ill man, but we all remember just a few months ago hiking together in Hawaii without any indication of what was to come. It’s the speed of all of this that has made it so hard — decision making, symptoms, quality of life.
Anyhow, tomorrow is a new day and who knows what will come. These days have a way of thwarting my expectations: when I think it will be a good day, it’s rotten. And on days when I’m prepared for the worst, there are brighter moments. This experience has just ground me down into the dirt. Slowly stomping me out. Everyday peeling myself up and putting on my best face to Lucas and to Ethan is harder and harder. But then I remind myself that nothing I am going through is as bad as what Lucas is. And thankfully we’ve always been kind of competitive with each other . So if he’s still going, I can too.
Another day. Mar 26, 2017
I know many people read this and need an update. There isn’t much to report. There was no real change today. We had a frank talk about the future and getting the facts from the cardiologists tomorrow.
Not surprisingly, all of this heavy stuff is so different than on tv. There are no clear statements of prognosis from doctors, no emotional speeches or outbursts. If anything it’s more quiet, more silence, more whispering. We are all in a fog. The hurt is a deep ache, a desire to never leave bed again, and all efforts focused on controlling your brain to not envision the future. Every day there are hundreds of moments when I think I’ll be okay and just as many moments where I know I will never be okay again.
Looking for hope. Mar 27, 2017
Rush doctors seem to think there isn’t much they can do for Lucas and that he’s in a steady decline. At this point I don’t trust anything they say anyhow. We are waiting for doctors from Northwestern and Stanford to get back to us tomorrow with their thoughts. If they also believe it’s a lost cause, I will back down.
Tomorrow they are going to try hemodialysis and if things don’t improve with his mental state, I will also back down.
I absolutely hate being in this position. At this point I want to stop all Rush doctors from speaking with me. They never worked as a team, never provided holistic treatment, and had major gaps in their oncology care. Worst of all, they immediately should have declined Lucas as a patient and referred us to a comprehensive cancer center capable of dealing with rare, aggressive cancer like Lucas’. Back then we were too scared from the diagnosis shock to question anyone or any treatment. And we were locked into Rush because that’s where it all started. Hindsight is 20/20 and hindsight hurts so very deeply.
So over the next few days we’ll find out if there is hope or not. But we will base that off facts and our observations and expertise and not emotion or doctors notes typed quickly into an EMR. Since I have power of attorney, I need to make sure I can live with the decision I make.
Today. Mar 29, 2017
Today I stopped fighting.
Today I realized that the missing piece of information I needed was the status of his cancer. We knew the status of his kidneys and his heart and doctors kept blaming the cancer for his decline but had no evidence to support that claim. He had not had a PET scan since he had been diagnosed. I had been hopeful his tumors had “melted” since Lucas had been in considerably less pain. I asked a radiologist to compare the original PET scan with the partial scans he had after the second round of chemo and was being prepped for radiation. There was also a chest image from when he had the heart attack. As she spoke, I gave up my fight. The liver tumor hadn’t shrunk and many lymph nodes had actually doubled in size. There were a number of new sites in his chest. Even if he recovered from heart attack and the kidney failure, there is no way to beat this cancer.
As a family, we decided to move to comfort care, removing the things that aren’t directly helping him feel less pain, less anxiety, etc. We will not be continuing dialysis.
The doctors give him a week or so to live.
The hardest part of this isn’t giving up the fight, it’s that Lucas is in no mental state to have conversations with, reminisce with, joke with. He barely speaks. He asked John to remove the flowers from his bed today when there were no flowers. He still tries to get out of bed even though he hasn’t been able to for weeks. We don’t have a chance to say the things we want to. It’s just a time to be with him and that has to be enough.
I hope that I didn’t prolong his suffering in any way by continuing to hope and search for solutions. As designers, Lucas and I are always searching for ways to improve things. I was just doing what I know. Unfortunately, the solution isn’t more medical treatments, it’s making the rest of his life comfortable. I just had a hard time seeing that solution. I guess I was trying to solve the wrong problem. A common pitfall of our line of work.
I do feel a sense of relief that I don’t have to spend my time angry, fighting, and frustrated with healthcare. I can just focus on him now. So that’s the plan.
How you can help. Mar 30, 2017
When Rod (Lucas’) dad passed away almost a year ago, Lucas was heartbroken at the thought that Ethan wouldn’t remember his grandad. Lucas admired his father so much and wanted Ethan to understand why. We shared stories of him but Lucas was still fearful he would forget.
Now it’s my turn. I’m fearful that Ethan will forget Lucas and so I have a request for all of you. If you have a story of Lucas to share, or something he taught you, or a photo or anything, please email it to me at (redacted) with the subject line Lucas Memory and I will compile all of these into a book for Ethan.
At peace. Mar 31, 2017
Lucas passed away this morning at 4:25 am.
How I’m doing. Apr 5, 2017
Many of you have reached out and asked me how I am doing. So here it is:
I am in denial. I cannot believe what happened. It is unbelievable. My brain thinks he’s on a business trip. Meanwhile, I’m rearranging every room in my house. Cleaning it out, simplifying, preparing for the enormous task ahead of handling it all as a single, working mom. Somehow I think the changes to the house will help me visually clue me into the massive change. I thought seeing his body at the funeral home would also (sadly, it didn’t look like him and I felt numb). I am searching for milestones to feel progress. But I know that grief won’t let me progress. As soon as my brain is able to admit this actually happened, I will crash and I know it.
