It has been 4 months since Tom left the hospital with hope after a diagnosis.

There was so much relief then believing there was a way forward.

Since his hospice stay, he is halfway back to his original weight. It is unclear if he will ever be able to gain it all back.

He is still at the hospital constantly between doctor’s and dentists visits 3-4 times a week. They are mostly just check ups with various specialists. About every two weeks he has rotations of scans with MRIs, PET scans, and labs. The days he has to do labs are never ideal because they make him take a radioactive dye that make him feel like he has the flu for about 24 hours afterwards. Then, once every few months he goes in for chemotherapy.

The good news is that something is working because his most recent scan on his lungs have shown that the growths have been cut in half.

He has had nine root canals, four tooth replacements, and will lose his back teeth due to the damage to his jawbone because of all the inflammation that has occurred. There is nothing to screw implants to, and his jaw will need surgery to clean up what they can and remove a rogue wisdom tooth.

Fortunately his heartburn that was tearing his esophagus up and most of his food sensitivity has subsided. This may be due to the myriad of medications that he is on. His bedside table looks like a pharmacy counter. While these medications clearly are helping and keeping him alive, they are not perfect and can cause other symptoms that we have to monitor. One being an increase in blood pressure that he now is on other medication for. Another being the likelihood that he will have osteoporosis. These medication complications are part of the reason he has so many doctor’s appointments so they can put in preventative measures as they watch his body react over time.

It is funny to think that it took us many many months to get a doctor to pay attention to his symptoms. Now when he goes, it is like they roll out the red carpet for him. Doctors are clamoring to be part of his treatment plan due to the rarity of his diagnosis. He went from begging and crying for attention, to now getting personal calls from the heads of departments.

We have had to come to grips with the fact that he may never fully recover. So while he looks much better and seems to be healed from the outside, there are still a lot of symptoms that he has, and some that have returned over the last month.

I mentioned the attention and procedures he has had on his teeth. He is usually in excruciating pain due to the inflammation still occurring in his gums. If you have ever had tooth pain, imagine the agony of having it all over your mouth months on end. Unbearable.

Recently, he started throwing up consistently again. He typically only has one meal a day, and never really gets a full meal even at that. While it doesn’t seem to be at the level where he is losing weight, he also can’t seem to gain it. His migraines have also returned, and there is not a day that goes by that he doesn’t wake up with one.

He has absolutely no immune system, which has us all on edge since a sickness can roll through our house for weeks at a time. He is on medication to help combat this, but there are side affects.

Like feeling lethargic all the time. He never feels fully rested. When he is awake, he feels as though he has been driving for 2-3 days: stiff and exhausted. He is still in pain constantly, and his threshold is one I cannot imagine. He feels like he has been hit by a train all the time. He is flush and out of breath like he just got done running a mile. This has been hard for him to not have the stamina he did since he was going to jiu jitsu several times a week.

However, all those symptoms aside, he is 1000 times better than he was this summer. There is no way that he can take as much medicine as he is and feel great. But he has accepted that fact and thinking of how he was this summer, the pain he is in now seems livable compared. We aren’t sure why symptoms are returning, but we are taking it day by day and one doctor’s visit at a time to manage what we see. At least this time, they seem to be paying attention.

He is doing his best to be present and awake for our family. He does all of the kid carpooling and activity taking. This is the first season since we have been together for almost two decades that I have seen him put energy towards a hunting season. He is enjoying scoping out deer stand spots and being in nature. (Now if he could just hit a deer at some point…) He is back at working on house projects and our homestead stuff. He built an extension on our chicken coup, and of course that means we needed four more chickens (no excuse for chicken math).

The kids don’t seem to notice the illness now since it seems much more invisible due to it being more about pain management at this point. They just think, “Dad is back.” They love having him present all the time even if he happens to fall asleep more.

It is interesting to see how life just moves on. For the most part we are moving forward. But there are moments where I am still stuck in my tracks and the wind is knocked out of me realizing how fleeting all of this can be. While there have been positives over the last few months like seeing the tumors downsize, I would be naïve to think that he is cured. We have just stabilized things for now. We are able to move through our life more “normally” but there are costs to it, and it is more of a burden for Tom and I to carry together.

But all in all, I am thankful for these past 4 months. It was more time together that I didn’t think we would have back in July. So while it still sucks to watch him be in pain, or to keep track of the hospital visits and medical conversations, I do feel blessed for the continued time we have here.

This past week, I started a devotional about Job. It has been a humbling time with God. I have cried with each entry grappling with the uncomfortable reality that suffering is a part of the human experience. The story of Job has been teaching me that resilience in the face of adversity is a powerful act of faith. It invites us to embrace the complexities of life and to maintain our relationship with God, even when answers elude us. Through Job’s journey, I am re-learning that enduring faith can illuminate our path, providing hope and strength amid life’s darkest moments. If I have been taught anything about life in this last year, it is to hold on strong to my faith. The diagnosis felt like we were stepping into a miracle. The days afterward felt like we would be able to return to our old selves. But the funny thing about life is that we are never again the version of who we were yesterday. Being through this with Tom, has been dark and twisty, and it still seems so cloudy some days. But through faith, we are able to move through it and be present in what we do have. Anyway, it has been a great devotional to read and watch interviews connected to it to remind me to be thankful and truly present in my faith. Doing so keeps it from seeming so dark most days.