I haven’t posted in a while because I’ve been pretty frustrated lately and didn’t want to write a whiny post. Maybe if I just toss it all out it will resonate with some other frustrated person out there.
I would give anything right now to actually have a conversation with someone who could understand even a fraction of the things I think and worry about on a daily basis. I know decent people and they do want to help, but no one I know has ever had a spouse diagnosed with stage 4 cancer AND get type 1 diabetes from the medication to get rid of the cancer.
As far as side effects go, diabetes sucks but it really is better than some side effects. Rich didn’t have to be put on steroids and he can still get immunotherapy. It has changed his life in so many ways but I am grateful that he didn’t get a side effect that would make it uncomfortable or impossible to leave the house.
I figured I would share a little bit about what our life had been like since November when he was diagnosed with type 1 diabetes caused from the Nivolumab (Opdivo).
In November, when he came home from the hospital he was sticking himself several times a day to test his glucose and also giving himself insulin 4 times a day. I watched him sticking himself and being so brave about it all. I hate needles and I don’t know if I could ever stick myself. I’m a big baby about things like that. I watched him struggle when his fingers were cold and he couldn’t get that one drop of blood to test. I’ve seen the complete frustration on his face when he’s had to stick himself a second time. I’ve watched and worried along with him when he tested and he was too low or too high. I reached over through the night to check on him terrified that he would drop too low and go into a coma. I did this in between the times that he got up in the middle of the night to test because he was afraid he would drop too low.
At the end of November, Rich got a continuous glucose monitor (CGM) which he wears all the time and it measures his glucose every 5 minutes. For several reasons it is a great device to have. It allows him to drive into work and to know if his sugar is dropping low. Before getting this he was working from home because he was afraid that his sugar would drop low and he would get into a car accident. A low sugar is similar to driving drunk. Having the CGM also meant he didn’t have to stick himself to test anymore (unless he thought the monitor was not reading correctly). We both also thought that it would be really helpful that it alarmed when his sugar was too high or too low. He has an app on his phone and I too can see his readings from the app on my phone even when we aren’t together. If I see he is dropping low and I call him I could call for help for him if he doesn’t respond to my text or call.
What we couldn’t wait for him to get, the CGM, has been a blessing but also a curse in our lives. It beeps during the night for lows, highs and when it goes offline. Whenever it beeps our dog goes crazy. If it beeps for a low, Rich has to get up to eat something. He may give himself insulin if it’s high and an offline notification is just an annoyance. The beeping has saved him many times. He frequently drops low at night and without the CGM he may not wake up to a low.
On the other hand, the beeping of the CGM causes major anxiety. Both of our phones beep every 5 minutes at various times of the day. Rich will be eating to treat a low and it still beeps until it goes up. The most frustrating times are those times that we are busy, hurried, or trying to concentrate. When it beeps we both get angry. I’ve seen Rich toss the phone and I’ve literally just screamed at the sound. I can’t even explain the amount of anxiety the beeping causes in addition to the anxiety caused from the worry that he’ll drop too low. Not to mention that stress causes lows too.
In addition to the CGM beeping and driving us crazy and the fact that it’s the middle of February and we haven’t slept a full night since November 5th, there are additional worries that weren’t there before this diagnosis. Rich has cancer and he lost 12 pounds when he got diabetes. He can’t eat whatever he wants to gain it back so that has been a struggle. He got sick one day and vomited and I became quite worried. It all turned out ok because it didn’t continue but many people get sick from treatments and while it is awful, Rich cannot go without food. A few hours of vomiting could land him in a hospital. Some side effects he could have that we used to think were minor could now become major issues.
One of the hardest things for me to watch is Rich’s struggle with this. The beeping at all hours no matter where we are. Him not being able to eat whatever he wants whenever he wants any more. The suffering he goes through if he eats too much or not enough for dinner. Cancer is a scary thing and when Rich was first diagnosed it was all that I thought about, but since he got type 1 diabetes, that has taken the front seat. Cancer is there in the background but right now the diabetes has us both more worried. The lows can be fatal if he goes too low. He has a whole bunch of things he must remember to take every time he leaves the house such as crackers, glucose tabs, insulin, needles etc, the constant tiredness from never sleeping more than 3 hour blocks night after night. The list goes on and on.
So yes, I am grateful that Rich didn’t get a side effect that caused him to have to go off treatment and I am happy he can still do things with this side effect. I just wish that the people that I know understood a little more about all of this. To an outside surely cancer is something to be more worried about than type 1 diabetes but to someone living with a person who has stage 4 cancer and type 1 diabetes it is the diabetes that literally keeps me awake at night and it is the diabetes that I see Rich struggling more with right now.