My Cancer Journey – Updated March 19

I have just been diagnosed with Cancer of the Jaw along with a broken jaw. I am currently in the early stages of figuring stuff out, and all of the appointments. It is overwhelming and scary, but I am optimistic since it is treatable. I am writing this to help me process. Because my jaw is still broken and everything is overwhelming, I thought writing about my journey would help me deal with what I am going through and let others know. It is a lot, and I will beat it, but right now I am very scared. For me, even writing this has been a challenge.

Leading Up To My Diagnosis

For a while, I had some dental issues. I had not gone to one for a while and started the process of getting help. The doctors and I all thought it was just an infection and treated it. They removed a few of the teeth that were giving trouble, and thought I was out of the woods with the pain and infection. A week and a half later, I was eating soft food, and all of a sudden, I heard a pop and thought my jaw had gotten out of place. I had a dentist appointment already for the follow-up, so I was just going to do that. I could not chew at all without being in so much pain.

At the dentist, I am always nervous. The dental team was outstanding when they saw me and did a quick X-ray. This is what showed my jaw broke. They called the ER and told me to go there immediately. I went home first because I did not feel safe going alone. I have a lot of medical trauma due to my father’s long hospitalization, which ended with his passing.

After a few hours in the ER, they ended up admitting me to a floor based on my X-ray. They did a CT scan the next day, and that really highlighted the damage. The next steps were to biopsy the area to find the cause. Most of the doctors were saying it was likely a bacterial infection, and the biopsy was to determine which one. Cancer was mentioned, but because I did not have a lot of the risk factors, unlikely. So much to everyone’s surprise, the results came back as a treatable cancer.

How I Found Out

How I found out the results was a little unsettling. After 3 days inpatient, I was sent home on a new program called hospital at home. They had a nurse visit 2 times a day, bring all my meds, and there was technology monitoring me with a tablet to keep connected to the nursing staff 24 hours a day. The program was great, what was less was that MyChart released the findings without someone telling me. Fortunately, the nurse was overdoing the checking, and the attending was on the tablet doing their rounds. My wife saw it first and told the attending to check the results. The doctor was shocked. And said she would start getting all of the appointments set for me.

Leading Up to Surgery

So far, I have had about 13 appointments within the month. They had more imaging, which showed the cancer was still localized. And then most of the other appointments were meetings with all of the different team care members. It was so overwhelming.

I do want to point out that what has been scary in this process has not been the tests, but what my mind goes to. Like I mentioned earlier, I have medical trauma around my dad’s death, and so everything that is happening with me, my mind goes right back to that. On top of that, I am still with a broken jaw, and can only have liquids. I am down 30 pounds, and I am finally stable in my weight, but it has been a challenge to have the correct calorie amounts. Another challenge is that with all the stress and pain, I am having higher blood pressure, and so we are trying to manage that. One day, my doctor tried increasing my blood pressure medication, and while the numbers were finally in a normal range, I was so tired I slept that whole day. That was even scarier, because I do not do that. But we readjusted, and now, I am managing it all.

Surgery Date is February 5th

They finally scheduled the surgery for February 5th. The surgery will take 10+ hours. What they are going to do is a lot. 1. They are going to take out the bone and impacted lymph nodes to have clean margins. This may mean I lose more teeth, but that is something that can be addressed after I heal. 2. Once they have clean margins, they will switch teams and start the reconstruction. To do this, they will remove bone and tissue from my leg and reshape and pack it into my jaw area, attaching blood vessels. 3. Once they have that, they will skin graft the area they removed from my leg with skin from another part of the leg. On top of all this, I will have a tracheotomy to help me breathe and a feeding tube due to the swelling that happens after the surgery.

Recovery

Recovery in the hospital takes on average 2 weeks. Within the first 5 days, they will do a swallow study to make sure there is no leakage, and I can swallow. If I pass that, then they will start removing the feeding tube and step down the tracheotomy. My goal is to have the tracheotomy out before discharge, but they said sometimes you have it temporarily afterwards. Also, I will have Physical Therapy to help with walking after the bone removal, and speech therapy to help since my jaw will be off.

I will update this post after surgery, and when I can

Surgery Update – February 5 – 6:30 am

I just got checked in and am waiting to go back for surgery prep.

Update from recovery from my Wife- Feb 6. Justin’s surgery ended up being 20ish hours long. The cancer was more aggressive than expected, so they had to keep resecting (taking more) to get clean margins and be sure they got it all. They got clean margins around dinner time and then shifted to reconstruction. He came out of surgery a little after 4am. He did really well and was able to avoid the ICU. He’s on a cancer floor and adjusting to new sensations. He appreciates the thoughts (he made me read Facebook comments), so please feel free to message him. It’s tough right now, but each day will get better.

Recovery update February 9th at 4:15pm.

I am doing mostly well. I have done two small laps of the floor. The limiting factor is more on my thigh, where they took the skin, than in the bone area.

They gave me a new Tracheotomy which is smaller. Then I had a speaking cap for a few hours, now it is capped altogether. The goal is to have this tomorrow and, after the leak/swallow study on Wednesday, start to take that off. With that study, hopefully I will be able to start to drink too. My mouth is so gross-tasting, and I just want ice chips or a Slurpee. In the month or so leading up to this, slurpees were a good relief on my jaw.

On a mental note, yesterday was hard in a surprising way. I keep having audio hallucinations of family members not here, and also nursing staff taking care when no one was here. This was so scary, and when I mentioned it, they said it was not uncommon. My electrolyte levels were off, and I had not been sleeping. So addressing that fixed that.

I have been able to sit up more and work a little, but it is tiring. Hopefully more tomorrow.

Big Recovery Updates February 11th at 10:30

Today, I feel so much better with my recovery. Yesterday was hard because I felt a little defeated after seeing my face for the first time when FaceTimeing my Daughter. I had avoided seeing myself in a mirror, and it was a shock. However, my wife and sister said it looks so much better. I normally do not like seeing or hearing myself, but this time I did not recognize who was looking back. So that was a huge scare. I could see parts, but not the whole face.

In addition to how I saw myself, the swallow study that I hoped for on the 10th was today. More on that later. But I was just having trouble seeing progress and was feeling so defeated. I could only do 2 small laps throughout the day, and with the dryness still having trouble sleeping. I did start to use my daughter’s AAC program to talk to the nurses and family, which was a small win.

Today, I finally did the leak and swallow test! It was a lot harder, only because of the swelling in my face and inside my mouth. I passed! So today I started having some sips of water. It does mean that I have to go slowly and relearn to drink, but I have already done it once with this. My lower lip is very numb and may never regain feeling. So straws are helpful.

I also did the whole floor as a lap today, which is about 400 feet. Other than my thigh hurting, I did great. I did not do a second because I did a lot of the transferring and standing for the tests. I also sat a lot more, which is so much better for me than lying in bed.

So with this, I am feeling the wins and not it is a small step up or your face looks better.

Tomorrow, I hope to start to get back into a research/school/online teaching routine, too. That should give me better places for my focus.

For a little different update

My daughter has been admitted over 14 times, and while I understand hospitals have their feels, which is better than when my dad was here and subsequently passed away after a long fight. But sitting here, I cannot think how the architects and designers have taken many of the design cues from airport designers. Everything has a brutalist utilitarian design. I have a window, blocked a lot by the hospital bed, and there is so little other color. With parts with color often being broken or out of date (whiteboard), to almost to remind you of the situation. If you have read the first lines of Long Dark Teat Time of the Soul, you will understand.

My wife is amazing and made a poster print of our family and even printed a Litany from Fear (from Dune) for me when I spiral. That definitely is helping.

update February 13 – 1:00PM

3 Big updates. First, I have 2 of the 4 dains out with the possibility of the vacuum one on my leg coming out as well. I feel so much relief just removing that weight.

The next positive update is from PT. I did stairs yesterday and today, along with full laps of the floor. Each day is getting easier moving, and I am making very good progress.

The last update is less on recovery but more that now I am in a place to have my laptop and can start to do work. While physically, I cannot do everything, having my mental production tools back and back to both Phd and Online teaching will help considerably. I have gotten caught up on one PhD course work, and after lunch and more PT, I will work on grading.

Drinking is still a challenge, which is greatly frustrating to me. I want to do better, but it is a process mainly limited by swelling and healing. My Wife saw just how frustrated I was getting this morning. And there is not much she can do; just having her here is a comfort.

Additional Update at 6:00PM

I no longer have the wound vac on my leg. So that is another thing disconnected. And I am a little more independent because of it. Unless I am getting a tube feed or IV Meds, I can have the walker and boot nd move freely around the room.

Update February 14 at 8:30

Today started crazy. Having more freedom was such a relief, and I could go to the bathroom and such without help. After I sat in the chair, my nurse came quickly in and asked how much I drank and she was on with CT. I had no idea what was going on. Turns out they were concerned about my white blood cells increasing.

Before they started the blood gathering, the OMS team restitched my tracheotomy because I had coughed a few stitches free. This is all because my mouth gets a lot of secretions, and my tongue struggles to clear them because of the swelling. I am finding drinking helps, so that is a positive on that. Just takes. Long time.

The next part of the chaos is gathering all sorts of blood work, some successful and others not so much. I go to the CT with only one side complete a few holes on the other side. The reason for one side is that transport came up during all this.

The CT was smooth. After the CT, my wife suggested calling the IV team for the next draw. They did, and the IV team was up in about 15 minutes.

The next chaos is my ENT doctor came as the IV team was working. He said other than some air, probably from the Tracheotomy he said everything looked good. The IV team got the blood that was needed. Then, after they left, we had some calm.

During the calm, I got cleaned up, was able to drink some more, and my wife and I could relax a moment.

The next problem arose at about 5. I had my tube feed going then for 4 hours, and it was maybe halfway done. I called the nurse, and then troubleshooting occurred. They changed the formula because my potassium level rose. My nurse swapped and tried to make it less thick, but nothing worked. They even called for an X-ray to check its placement. At this hour, the X-ray result came back with no issue for the tube. At the same time, my night nurse started the evening medication. She saw how slow it was, and I will be right back and get a pump. So that is now working properly.

Update February 15 at 6PM

So today had a very big update. My Trach is no longer in! It is weird having to put this heavy sock kind of thing up to the bandages, to talk and cough, but otherwise it is great. My voice is better. One thing that this means is they most likely will not send me with a feeding tube just because they cannot do a surgical one as easily as before. The plan is now to get me to do thicker liquids and be sent home.

The next big update is that my daughter visited me in the family waiting room today. This has been the longest I have been away from her, and other than some FaceTime, she has not seen me. She was so noticeably happy and excited, but also when she tried to sit on me, she knew something was off because when she pulled on the NG tube, I reacted. Later, she brought her drink to me, and instead of sitting on me, she sat next to me. It is amazing how much she knows.

The partial setback is still around, my WBC count is still too high, but I do not show any signs of any impact. So today they took away all liquids and left me with only tube feeds, thinking it may be aspiration. So that is a bit of a setback, but hopefully super short-term.

Update February 16, 10:00pm.

So my WBC went down, but they are still confused by how high it is,s and I show no signs of an infection. They suspect it to be related to a swallow aspiration, and so tomorrow I am scheduled for another swallow study.

Otherwise, the day was good in terms of just working on getting better. My wife brought in one of my Gundam Model kits that I packed before surgery. Building these kits takes a lot of mental focus and also involves my hands, so it is a welcome distraction.

In addition to this distraction, I am up to 4 laps of the floor with the walker. For reference, 13 Laps equal a mile. Also, I have hiking poles that I wanted to try instead of the walker, for personal reasons. So today, PT let me try them. While as fast as the walker, I did ok. If I almost Nordic walked with my boot foot first, I was keeping good balance. However, when I broke rhythm, I had a few times when I was wobbly. When my sister came after work, we did 2 laps with the poles, and I did not get wobbly, but did have a few times where I had to reset my walking rhythm.

Update February 19, 9:00pm.

Yesterday and most of today were in a holding pattern. Much of it was just waiting for my WBC to start to consistently drop. They did find a pocket in my jaw, which may be the cause, and so they had been flushing it with saline and suctioning up what comes out. Oddly, it tastes like rotten watermelon.

One of the other challenges is that one of the IV antibiotics is effective for destroying IVs. So on February 18, at 4am, I needed to get a new one. Then another team came and gave 5 shots of antidote where it broke. I have a bruise from it, and occasionally it itches. Today, any time that an antibiotic is in, I am a lot more concerned and pay attention to the IV for subtle changes.

PT cleared me to go home using my hiking poles, and I have graduated to not needing the walker at all. He ended up taking the walker because someone else’s had walked away, and they needed it to get around. He said that happens too frequently, and it never made sense to him. In addition to being able to use the hiking poles, I can, in short distances, use just one pole to get myself to the bathroom and other parts of the room. So that is good.

The big update came about 6pm tonight. My wife brought my daughter to the family waiting room for a visit. I had been really down just being in the hospital. Struggling with not having fresh air. Everyone was commenting on how they were concerned about the freezing rain yesterday, and I commented that I love it because of what it does to the trees. Being able to see my daughter for even a short time helped to recenter me.

But as I got back, the resident from ENT who normally comes to change my leg dressing said I was cleared for sips of water! You have no idea just how much having sips of water means after almost 2 weeks without it. I can drink a whole lot easier than the last attempt, which is great. I have a swallow study tomorrow. If I pass and keep up, I can get this NG tube out of my nose. I often catch it on my hand or lots of other things, and because it is stitched in, it really hurts when it gets pulled.

Update February 20, 12:00pm.

So this morning started optimistically. My WBC was finally at a normal level, so they were happy about that and talked about the leak test and getting me home early next week (or over the weekend). But that all fell apart with the leak test. It showed a small leak that would pool under the surgery area. I am currently not taking the news well and am struggling. Luckily, my wife is here. I am also trying, but slowly, to drink the water they gave this morning, before it gets taken away again.

I really hate the hospital, and just being here does not give any comfort and is a level of hell. Something like this, that I cannot fix or work to better, just ruins my mental state. My wife tried to say my face swelling is better, to give some positive and I shot it down because the swelling has nothing to do with me getting out.

Update 6:00pm

So the Team came up and discussed the plan. Currently, over the weekend, they are just going to watch my levels. However, they also booked the operating room for Monday in case more intervention is needed. So the hole that showed up in the leak test. They hope that it just heals on its own. So I am at least here now until early next week, but that is all up to this whole issue.

One of the reasons I struggle with this is that I feel fine and have no control over something like this. Getting cleared by PT was easy by comparison.

Update February 21, 12:00pm.

So, not a real update today, other than just keep on going. The doctors sound like they are leaning toward the surgery on Monday. They are weaning me off of IV antibiotics to oral. They also said the drains will most likely be all gone when I go home.

Update February 22, 10:00 PM

Overall, yesterday and today have been challenging. My wife has been amazing, attempting to distract me. She brought in the switch and my projector, and we have been playing Mario Kart with friends and family. We have also been watching TV. This relief has been short-lived with the impending one more surgery tomorrow. I know the procedure is needed because when they analyzed my drainage, they found that saliva was leaking into it.

The surgery tomorrow should be a short one, only about 2 hours to fix the leak and clean out any infection that lingers. The doctors all say it is routine and should be fairly straightforward. However, I am quite scared by the whole thing. The procedure is similar to the one my dad had before he did not recover. I try to keep telling myself that this is very different, but intrusive thoughts do come through about it. This is the reason I avoided doctors for so long; I was always afraid of the “one more thing”.

I do not have a time yet, and I took an extra anxiety medicine to help me sleep tonight. I know it is going to be a rough one, but I will make it.

Update February 23, 10:00AM

Surgery Today – Time Unknown

So the head of my ENT had been on the fence about performing the surgery today. The infection has been doing well, WBC-wise, and so many thought the infection was behind me. The doctor had been monitoring from a distance for the last week, because he was at a conference, and today came in and examined me extensively. He did not like what was in the drainage, and so he decided to do the surgery to make sure there is not another infection that is being missed, and to clean up what the drainage is getting. He said he would try not to interfere with the previous surgery sites, and it would take about 2 hours to perform.

I am still apprehensive about it, but if it gets me home sooner, I will. I do still worry about the “one more thing,” and I hope that that does not come true.

On a positive note, my leg drain is now out. It was annoying because often I would catch it walking or sitting. Now that it is out, I feel a little freer. Also, since it is out, I can wear pants again, and promptly put some on!

Update 6:30pm

Back in my room from surgery. Still groggy and with a sore throat. My Wife said that the infection was actually managed well, but the only way to tell was by going in. I walked into my room, which is good, so I did not lose a lot of progress. The doctors said I can start back with water today, and they are hopeful I can get to full liquids in a couple of days!

Update February 24, 6:00PM

After my last update, I ended up taking a 2-lap walk before bed. Which I was happy because I was worried about how the surgery would impact my recovery.

Today, rounds were mostly just quiet, checking on the new neck drain, which no longer has a collector but just gauze. It does need a little more attention than before, because it just gets messy, so I just need to think of that. Drinking-wise, this morning was a bit of an order soup, with a liquid tray coming in, right after they said only water. Then they changed it to be clear for lunch. So having flavor was a big deal to me. I finished my tray and still did the tube feed shortly after.

Otherwise, mentally, I am doing a lot better and just getting more done. I spend less time just staring into the distance, lost in thought, which is always my worst enemy. It will be very welcome to be back home and in my own environment, but my wife is here every day, and I am grateful for her.

Update February 26, 1:00PM

Yesterday and Today have been very quiet. I was moved to full liquids yesterday, and have been drinking all of that well. I also have no more tube feeds and can take my medicine by mouth. Hopefully, my NG tube will be removed along with the drain soon. The NG tube makes drinking and eating very challenging, and when the SLP came by to check on swallow progress, they said I have a fairly large-bore NG tube, and when it is out, it will open my esophagus a lot.

The plan for tomorrow is that I will be discharged about noon!!!

Update 6:00PM

I am now without the NG tube and Doppler Line!!!! It feels so great not to have to worry about where they are and if something will catch on them. The process of pulling them was easy, just cutting the stitches holding them in and then pulling them out. The NG was a bit odd because it came out of my nose but had been in my stomach, so it burned a little from the stomach acid as it went by, for only a few seconds.

The only thing left is the drain in my neck, which is still active and now in a better position. They said it should come out tomorrow when I am discharged.

Final Hospital Update- Discharged at 1:35 pm on February 27

Today was quiet because all teams were ready for me to be discharged. When they brought me down, my wife had my daughter, and I could see my daughter’s excitement to see me. She was very vocal and wanting my hand on the drive home. We are now home, and she is still excited by me being home.

Update March 7

My first week being home was good, but filled with attempting to work more and lots of doctor appointments. The week started with a random leak in my face opposite the drain on Monday. This hole in my face leaked for about 12 hours the first day, and then off and on the second. We did not know what was going on, but on Tuesday, I saw OMFS, and they looked at it as being superficial and not a big worry. During that appointment, they looked at the Stoma site along with my mouth and said everything was healing nicely. They did recommend packing my drain site with a different type of material to encourage healing. That has been mostly good but also a little awkward for my wife and me since she has to put it in using a quetip, and not knowing how deep to go is weird. Also at this appointment, I was checked by the hospital dentist for radiation therapy. It is interesting to know that radiation can make cavities worse, and so they look to prevent it. I was so anxious about this appointment that I took my backup anxiety med, and when I got home, I was knocked out.

Wednesday was mostly quiet, with only the Home Health Nurse coming to check everything. Thursday, I had my first PT and OT session. I asked a friend to drive me, thinking that my tiredness from Tuesday was more along the lines of me just wearing out, but then figured out it was more the anxiety med and me crashing afterwards. Both commented that I did not lose as much function as others have from this kind of surgery and hospital stay. So I have some exercises to strengthen a few areas, but overall, I am doing well there. When I got home, I was still good and was able to pick up my daughter from school, which she was super happy about, and I was happy with how it went.

Friday was my ENT and SLP appointments. At ENT, he looked at the drain and the random leak site, probing a whole lot deeper than we thought. As he did it, my wife’s face was making me anxious because I only felt a little bit of it, but he face told that a lot more was going on. The random leak site was a lot deeper, and he said it is mostly caused by the stitches, so not a big deal, and he suggested packing it. The drain he cultured it and then packed it as well. He did report that one of my cultures from my hospital stay finally came back with a random Mycobacterium (same family as TB), which is weird, and so I am now going to see Infectious Disease. This infection is not causing any issues for me, so they just want to understand what is going on. With SLP, they looked at my swallow and tongue movement. I have a lot of swelling and cannot push my tongue out, but I am doing well overall. I got some exercises to do to improve my swallow for when I can eat solids again.

Update March 13 – Radiation and Chemo Plans and a Possible Setback

This week has been mostly good. I am moving more and started to eat some semi-solids (scrambled eggs!!). However, at my ENT appointment earlier in the week, as we were doing wound care, one of the wounds that he was flushing turned out to be directly connected to my mouth. It was weird when he pushed saline into the wound, hoping to get any fluids out, and it then came out of my mouth to everyone’s surprise. We are currently attempting to pack it and keep it clean, so it heals properly. If it does not, then I would need to get a feeding tube and go back to NPO until it heals. I am afraid of that setback, and the feeding tube, to me, represents a failure on my part. I have been doing everything I can for nutrition and worked in the hospital to be discharged without one, but to now potentially need one is heartbreaking.

I was also fitted for my radiation treatment mask this week. The process was mostly uneventful, with me just lying there. The team then put a warm sheet of plastic over my face, and they made sure to push it against my skin so it creates a set placement for treatment. Radiation treatment requires consistency, which is why the mask is important. Also, when they created the mask, they did a CT scan to make sure it was in the correct place. Now starting on March 25th, I will have radiation Monday through Friday for about 6 weeks.

Today, we met with the hospital oncology department, and we discussed my chemo treatment plan. We discussed the different dosage options and learned that the chemo that I am going to be on works with the radiation, so I will need as many dosses it takes to get to my required amount within the 6 weeks of radiation. One of the side effects of the chemo, that I am extremely scared about, is hearing loss. My doctor went over my results, and she said my hearing was almost perfect, and said the side effect, if I get it, is about a 15db loss. I really do not want to have that. I am in a study looking at a potential medication to prevent this loss, but it is a blind study, so I will not know if I have the study medication or a placebo. To mitigate the risks, though, we are going to do lower doses of chemo more frequently. So I will have the therapy every week on Monday for about 5 hours on top of the radiation. The challenge with this is that I need to not have an active infection, and I have some weird cultures that have come back. I see Infectious Disease next week to figure this out. If I do have an infection and they recommend a change to my chemo plan, I will do it.

Update March 16

Today started with a quick question to ENT on some puffiness around one of the spots draining. They replied and got me in today instead of Wednesday. So that was at first worrisome, but the appointment actually had a lot of good but with 1 concern for radiation and chemo. All of the sites are healing ok, but slowly. The one that was connected to my mouth, still is but is healing. He examined and flushed it more and it turns out that where it comes out is an area that the feeding tube would not help. For reference this hole is under my chin and the part in my mount is high on the right cheek, which is so crazy. My ENT doctor did say he is going to reach out and maybe see if radiation and chemo could be pushed a little to help give more time to heal. Another piece of the puzzle is the Infectious Disease appointment on Wednesday, which will help with that plan.

The trach site is healed! And the Doctor said I can start getting out of the boot! I have PT&OT on Thursday so we will get a better plan on that but I have already been able to stand and some limited movements to help the ankle to rebuild.

Update March 19

Yesterday I met with Infectious Disease. The appointment was to talk about options on the random rare infection that I have that is causing the drain site to heal slower than expected. The bacteria is resistant to many antibiotics and so the ones that are required to beat it are harder to get and a lot more expensive. There are IV options too, but with my upcoming Chemo and Radiation treatments, the oral ones present the best chance to work with the least side effects. So I started one and they are working with the insurance to get the other. Fingers crossed it works, but the other challenge is normally they would like a few weeks of treatment before chemo, but I am running out of time for that.

This morning, so far I have one great update. I graduated OT with only one appointment. I have worked hard on my exercises at home and she said that I am doing great and have almost all of my range of motion and strength back. That is a big relief. From an OT perspective, I am cleared to also pickup my daughter!!!