About My Wife’s Situation
Some of you have asked me how my wife is doing (thanks for asking), so here’s this post while one of the compilations is being put together.
She’s stable and receiving treatment. They won’t run any more tests for the cancer until after the fourth cycle of immunotherapy, and she completed her third cycle this week, so now we have to wait three weeks for the fourth cycle and to start the tests to see how the cancer has progressed.
Her main issue right now is the side effects. They’re a bit of a lottery. With each cycle, she might experience a different one, which may or may not build up over time and accumulate with the previous ones. Luckily, they’re milder than the side effects of chemotherapy would be.
During the first cycle, she experienced mouth sores (she still has them, but they’re healing), a continuous headache, and extreme drowsiness. We joked that she was turning into a cat, since she was sleeping between 12 and 15 hours a day.
In the second cycle, the headache went away and the drowsiness has eased a bit (she “only” sleeps 10–12 hours a day) but she began to experience two complicated side effects.
The first one we noticed was inflammation in her lungs. It was easy to detect, since she’s on oxygen 24 hours a day due to her COPD and began to have more trouble breathing than usual. We increased her oxygen flow for a couple of weeks, and little by little her body adapted, and the inflammation seems to have gone away. She’s back to her usual flow of 4 LPM this week.
The second side effect was more complicated (and we don’t know if it occurred during the first or second cycle; we only know when it was detected). She has developed Type 1 diabetes. The doctors detected it during a routine checkup a few days before starting the third cycle, last Friday. Her blood sugar was 579 (the normal range is around 120). We were sent to the ER and spent 34 hours there undergoing a series of tests. She’s been put on insulin treatment, and this week we’ve had to go to the hospital three times (one of those visits coinciding with the start of the third cycle of immunotherapy, on Tuesday) to adjust her insulin dose. Little by little, thanks to the insulin, her blood sugar levels are returning to normal. The doctors don’t know if this will go away with the next cycle or not.
We don’t know what new side effects she might develop from the immunotherapy dose she received on Tuesday, if she’ll develop any at all, or if any of the ones she already has will go away. So far, we haven’t noticed anything. And that’s all the news we have about her situation.
How am I coping with all this? Better than I expected. As you know, I’ve had to quit my day job, so I have all the time I need to take her to the hospital for her appointments, make sure she takes her medication (or inject it), do the housework (I used to enjoy cooking when I only did it a couple of times a week and could cook whatever I wanted. I’m starting to hate it), and… develop the game.
As for developing the game, I’ve found a rhythm that fits our new needs.
For example, before all this, I couldn’t start writing a scene if I was going to have less than an hour straight to write. The breaks killed my writing flow, and getting back into it in the middle of a scene made me waste a lot of time, having to reread the whole scene before continuing.
Now I write whenever I can. I know I’ll have a break to give her her medication at 8 AM, breakfast time (checking her blood sugar, giving her insulin, preparing breakfast), 11 AM, 2 PM, lunch time (same as breakfast), 4 PM, 8 PM, dinner time (same as at lunch), 11 PM, and 11:30 PM. Sometimes it’s a five-minute break; sometimes it’s an hour or more. Add to that when I brew a couple of coffees, the pauses to check if she’s hydrated, and the hospital visits.
I’ve learned to keep part of my mind on the scene I was writing when the alarm went off (except during meal times or hospital visits), which makes getting back to work much easier. You’ve seen this in the progress reports. In the first few reports since this situation began, I felt like I wasn’t making enough progress, whereas the most recent ones have been at a pace even faster than my pace before all this happened (the scenes were also easier to both write and render, since the environments and new characters were already designed). It’s the only upside to being “unemployed.”
I'm taking care of myself, too. Don't worry. I eat, I drink (no alcohol), I sleep (not much, as usual), I walk (often pushing a wheelchair while my wife sits comfortably... she's getting lazy... just kidding), and I try to laugh as much as I can and at everything I can.
Oh, and she doesn't hate me yet for giving her injections and checking her blood sugar levels. That's nine needle pricks a day (between tests and medication), and she hates needles.
And that’s all. Thanks for asking!
Comments (28)
Oh... And the very small needles helped me handle the needle issue well since I was self injecting. No push button auto injectors for me....... Glad that part is over for me. At least for the present. Never know when that may change..
I feel her about needles.. I hate them too. When I was on insulin it was the long duration release version so I only had to self inject once per day. Keep a touch of honey handy because there will be those times when you may actually hit a vien and the injection will trigger an immediate low blood sugar event. I did this to myself a few times early on. Pinch more before injection gives more "Fatty Tissue" to inject into to reduce vein injections. I forgot to mention the "Cold Swetting" symptom of an event that goes with the fainting feelings. If she says she is cold but is swetting like too hot. Be ready with honey to offset the event. Honey is fastest and easiest to control. It will not take much. Give small "dose" by mouth. Say a dab on fingertip she can lick off. Popsickle sticks work well for this to avoid embarrassment or other issues with finger sucking/licking.. (This is to deal with dirty minds in this site environment since most of us are pervs at heart)
Thank you for sharing this very personal situation. I'm rooting for you and your wife during this very hard and tiring fight. I think that you are an extraordinary person to do everything that you have been doing for not only your family, but your fans too. You have my deepest respect!
I am hoping for you
here's hoping for the best with her recovery and hope both of you stay strong throughout everything. looking forward to playing the next update... stay strong brother and keep up the hard work
Ok... Diabetic speaking here. Typically Type 1 is "From Birth" while developed is Type 2 and can develop later in life. Mine came along between my 57th and 58th birthdays. Now for the gritty. DO NOT let them tell you "Metformin" is the go to drug! This drug distroyed my father's kidneys. 3 days after both of them failed he died. I was on MF and immediately made my doctors take me off of it and put me on a newer and more dependable medication. I am no longer on insulin. I only take the new drugs, one in the morning and one in the evening. My A1C is running around 7 to 7.6 because anything under 7 and I have what they call "Low Blood Sugar Events" Faint feelings, like trying to pass out. Weakness that leads to laying down to keep from falling down. Fastest and most effective treatment.. A packet of honey (Condiment) kept in a testing strip container in my pocket to protect it from any damage and leaking. Fast access, quick bite and tear and a little squirt of honey into the mouth and after a few seconds normalization. Since I figured out my golden band of 7 to 7.6 A1C I have not had another event. Now going on 6 years without. Morning fasting test comes in, on average, 167. Not bad considering where it was when they found it. A1C at time of discovery. 16.7. Yes.. OFF THE SCALES! BS level at that time. 444. Doctor told me if I fell or someone punched me I could have gone into a coma and died. 3 months after discover on long acting insulin injections, 1 in am every day, and the metformin before finding out it was so hard on kidneys, and my average daily BS was around 175. Under 200 after a normal meal. I can tell now by how I am feeling if my level is higher or lower and adjust for it without even bothering to test. I am now over 65 and active as well as self motivating. Keep an eye on this for her. But at least consider a second opinion on the type. Type 1 is VERY serious and dangerous due to birth origination. I had 2 friends that had type 1 since birth. Both are gone now. She got hurt in an accident which shocked her system and put her into a coma that she did not wake up from. He drove home from work. Parked in his driveway and passed into coma before he could get out of the car. Family found him next morning. Too late. If it IS type 1 make sure family and close friends are ready to help when needed. Best option? Never leave her alone. I share this with everyone here because there are so many people out there that could have it and not even know it and for those who have it and know so that you can consider options away from those older prescriptions that are go to choices for most doctors despite newer, more effective and dependable drugs just because they are a little more expensive. My choice. Pay a little more and keep my kidneys healthy.
Still Praying for her and you. Thanks for the Update
Praying for her. God Bless!
See if you can get a continuous glucose monitor for her. These are sensors she would wear on her arm and they monitor blood glucose levels for you so you don't have to prick her finger multiple times per day. If her glucose rises too high or falls too low, you'll get an alert on your phone. As a diabetic, I can attest that these things are life-changing. They can be expensive here in the US if health insurance doesn't cover them, but I gather you live in an actually civilized country, so that may not be a concern.
Jesus Trop, while I was reading what your poor wife is going through I was getting chocked up, man oh man what a fighter she is, I’m so very sorry that she has to go through this, it’s just heartbreaking, like I said before there’s not a day that goes by that I don’t think of you guys, make sure you take care of yourself because if you get run down who will take care of her? You guys are in my prayers, I hope and wish all the best for you and your wife ❤️
I know what you are going through, I may not know your personal pain and tiredness, but I went through the fact my wife's lung cancer. I will pray for continued good will. Be her rock and enjoy everyday you have together.
Thank you for the update Trop. In reading about her side effects, I was reminded that my son had (pretty close to) the same ones when he was sick. Not all of the ones you mentioned but close. I had to chuckle when you said, "I walk (often pushing a wheelchair while my wife sits comfortably... she's getting lazy... just kidding)". Made me think of Jamaal and being our "Favorite Tetris piece". 🤣🤣🤣
Trop, reading about your and your wifes fight against such an treacherous enemy like this shit makes me feel small in a way i cant really comprehend… I have been shot at, people tried to stab me and one time a deserter we catched at his family farm tried to overrun me over with his tractor , after that didnt succeded he tried to stab me with a pitchfork… I was never much the guy who thought much about being injured or something else. But i am sure dont have the strength you have, and i am sure admiring you and your wife for how you handle this. You are a hero for me and for that i salute and honor you guys. Take care and stay as strong as you are, your wife is really lucky to have such an husband like you are. Richard 🫡
I pray everyday for you and your family so the treatments make the bad things inside goes away forever. And so both of you get the time to enjoy at fullest what life can still offer. A big hug Trope and my wish for amazing results at the end of the her cycle. You're a very reliable partner and creator, never give up! 💪🏻
You made my day. I woke up to a notification of your post, and I was extremely happy to see that your wife is recovering as well as can be expected. I've been following My Dorm for a long time, so I kind of feel like you and your wife are a sort of friend of mine, even though we don't know each other. Stay strong for her, for your stepson and for yourself, so don't neglect yourself because she needs you 100%.! Know that Mark is proud of you for giving your all for your wife. My own philosophy is that if there's even a 1% chance of hope, everything will be alright so keep your head out of self-deprecating nonsense and stay positive. My blessings and prayers for your wife's recovery.
Keep up the great work and focus on your wife and family first and get back to the game when you can.
Solo desearos a ti y tu familia lo mejor. Es jodido cuanto lo mas que podemos hacer por vosotros,los jugadores- seguidores es esto. Espero que todo vaya a mejor. Muchos animos
Gracias, Iván, Vuestro apoyo significa más de lo que podéis imaginar, te lo aseguro.
Thanks for the update. All the best to your wife for a full & swift recovery. Glad you're looking after yourself too, she needs you to be at 100%.
Thanks, Digi, The first thing the doctor told me after the diagnose was that caretakers should take care of themselves too. Let's listen to the docs! I understand what he meant. I can't afford to fall ill because she wouldn't be able to do some things by herself.
I'm hopeful for the test results, and I will remain so until evidence proves otherwise. I am still ever so grateful that you and your wife have shared the My Dorm story and your own time with so many of us. Yes, we pay you some money for our peak into this universe, but you and your wife are the ones who make it possible to see this beautiful little prism of light in another existence. After all, stories aren't just stories. They're all real, somewhere. So my story is that the results of the upcoming tests will be reassuring, and I'll just have to hope that HERE is where my story is real.
Thanks, Vinny, In the theory of the multiverse, there's at least one universe where she heals completely. It could be our universe, right? In the same theory, there's at least a universe where Daphne, Erika, Martha, Amanda, and Eileen are real and they are living the life described in My Dorm. That theory says that writers peek into those universes to tell their story. Or that the story happens when a writer thinks of it.
"Hi. A few months ago I started playing The Dorm and wanted to join Patreon to support the game, and that's when I came across your wife's story and the updates on her health. I just wanted to drop by to send you a message of support. I deeply admire the dedication and love with which you are taking care of her; it's clear that you are a fundamental pillar for her through this very difficult process. I wish you both many blessings from the bottom of my heart, I hope for her steady recovery, and that you continue to find the strength needed to face each day. Sending you a big hug and my very best wishes from Mexico. (P.S.: Sorry for my English, I'm still studying it :p)
Thanks for writing. We hope for a recovery or a stabilization of her condition. Let's see how it goes. Si estás más cómodo escribiendo en español, no hay ningún problema. Aunque los posts los haga en inglés, este Patreon está pensado para que podáis hablar en vuestro idioma, si es uno de los idiomas que hablo (Español, Catalán, Inglés). Un abrazo.
Praying for your wife fast recovery.... Hope you doing well as well....
Thanks!
Hi glad to hear the treatment is going well re: immunotherapy. I’m a nurse and in regards to the continual blood sugar checks. There are devices that you can connect to her arm that can monitor the blood sugars by running a reader over it. They generally last a week to 14 days. In Australia it is called Freestyle Libre. I’m sure you’d be able to find something similar where you are. Would save a few less pin pricks per day. All the best. 😊
Thanks! I asked the doctors about the Freestyle Libre. My dad used it (the first model, it's sold under the same name here) when he was alive (paid by him at first, fully subsidized by the National Health System from 2017 or 2018 until he died in 2019) and I knew about it. The doctors have said she doesn't need minute-by-minute control right now until we know if it's a permanent or temporary condition. If it goes on for too long, I will insist or buy a subscription myself.