Sometimes, the road less traveled may be your best route…
After our emergency room trip yesterday, we had to take action and get some answers for Dad. I spent the morning talking with my sister and trying to figure out what we can do to keep Dad from being stuck in the bedroom upstairs all day long. Why was he stuck upstairs all day? Because he can no longer get himself up and down the stairs, and the bedroom and our only bathroom is upstairs, so naturally it is the obvious short-term solution that will allow Dad the use of the bathroom when my husband or son are not home to help him come down (or go up). I simply cannot do it, and it is not because I don’t want to, it is because I am not physically strong enough to keep him from falling in the event that his legs buckle on him halfway down the stairs.
Needless to say, this is not an ideal situation, and it is certainly not what Dad’s impression of chemotherapy was. He knew that he would feel extremely ill, fatigued, lack an appetite and lose his hair. What he didn’t know was that he would become confined to a bedroom because his legs are too weak to hold him. He is not able to shower on his own, he cannot go outside, he cannot stand at all unless he is moving from one chair to another. And this is how he feels every single day, and then right back to chemotherapy he goes to start all over again.
He “signed up” for chemotherapy because he thought that it was going to help with his cancer symptoms, not to make them worse.
A desperate call to his doctor…
I called his oncologist this morning, and thankfully, she returned the call this afternoon.
She discussed Dad’s treatment plan, and asked him how he was feeling. He explained to her that he is absolutely miserable, and that this is not how he wants to spend this time with his family. He wants to leave the house, go places, see people, maybe even go on a short trip, but none of that has been possible since his chemotherapy began. Frankly, he feels worse as the days go on.
She told Dad that she would reduce the chemotherapy drugs to a lower dose, and that he will skip one week (he was scheduled for chemo Thursday, December 6th, 2018) to see if his condition improves. Skipping next week is how she is able to gauge whether his condition is deteriorating due to the chemotherapy or due to the cancer itself. For this time only, he will go 4 weeks rather than 3 weeks between treatments. She did explain that reducing the amount of chemotherapy he receives will also reduce its effectiveness, but Dad agreed that it is what he wants to do.
She is also going to schedule scans to see if the chemotherapy is even doing it’s job. Dad told her that if it is not working, he no longer wants to do it, and to “let the cards fall as they may” (his words not mine).
Quality Over Quantity is Dad’s Wish
When you get to this stage with a loved one, at least for me, it is easier to accept what is happening when you have answers and know a little about why it’s happening and if there is anything that can be done to make him feel better. After all, his chemotherapy treatments are for palliative reasons only, as his cancer cannot be cured at this stage. For this reason, Dad’s conversation with his doctor has made everyone feel a little bit better, including Dad, because at least we are making an attempt at giving him some of the quality of life that he has made clear is the most important thing for him. All he wants is to enjoy his family and not feel like he is already dying.
We will now anxiously await an appointment for him to get the scans done, and in the meantime, hopefully get Dad out of the house. I am praying that him having an extra week without chemo will give us a chance to do something with him that he will enjoy and feel half-way decent.