My husband has been on the cancer drug Sutent for about 3 weeks. It is a biotherapy drug, but the doctors and everyone else calls it a chemotherapy pill. Its been scary for both of us. The first week wasn’t oo bad for Ken. He felt a little tired, but not much more than usual. He mowed the lawn and did things around the house. The second week, he felt more tired and started itching, a side effect of the medication. He has to apply lotion on his hands and feet several times a day to avoid skin peeling and sores. He still tried to do yard work, even though we nagged him about asking for help. Our sons-in-law offered to help, but Ken said he didn’t want to ask for help. By the end of week 2, it was no longer an issue.
He started vomiting at the end of week 2. The doctor prescribed medication for the nausea, which, of couese, the insurance didn’t want to pay for. The pharmacy was out of one of the nausea meds, but I convinced them to give me a few pills. After several days, the insurance company called and said they would pay for the medicine because it is related to chemotherapy. The nausea meds are helping, but this week, Ken is sleeping most of the day, and he hardly eats. I’ve been able to give him some Ensure, strawberry ice cream, and a peanut butter and jelly sandwich here and there.
His skin is yellow, and his hair is white, just like it says on the side effects. They will check his liver function again in a few days, along with a list of blood tests. They will probably order some kind of scan again.
A few times, he said he just couldn’t go through the chemo anymore, and we are still on the first round. That is terrifying. I can’t imagine how scared he must be. at our last doctor visit, we spoke with a social worker about getting the drug company to pay for the chemo. We make a little too much in Social security to qualify for Medicaid to supplement the Medicare, and as of Jan 1, the insurance company would expect us to pay 20% of the cost. Let’s do the math- $15,500 a month for the Sutent times 20%= $3100. We make $2800/ month. HMMM!!!
My son-in-law and I met with the social worker while my husband and daughter waited in the lobby. We went over several resources to help pay for the gas for 160 mile round trips to the doctor’s office in our 2001 minivan, filled out some of the forms for the medication and discussed some other things. For example, have we discussed hospice care WHEN (not “if”) he has to discontinue the chemo. I felt a little queasy when she said that. The doctor hadn’t talked about that scenario. He said many people live 5 years or more with this therapy. Now I wonder, should we ask the doctor about this? I told my husband what the social worker said when we were home. I had to reassure him, just like I have to reassure our grandchildren, that it was unlikely to happen soon, if at all. We do have living wills, and advance directives from an attorney, but I might still have to get all of our children to agree if it comes to a decision about hospice care. I think it should be a decision between my husband and I.
It feels like there is some new form to fill out, or bills to pay, phone calls to make, or documents to send, every day. When our grandson comes to me crying because he is afraid Pop is going to die, I have to come up with the right explanation. I think I did a good job of being tactful, yet honest. It is exhausting just having a sick husband. All of these extra responsibilities, when I have Fibromyalgia chronic back pain, arthritis from the neck down, etc. gets overwhelming. I’m used to having my husband do the dishes and laundry, and take out the garbage. I try to coerce every grandchild who walks in the door to help with the housekeeping.
I’m not complaining as much as I am scared. I have to remember to call the American Cancer Society local person tomorrow to see if we can get a gas card before next week. First, I have to remember where I put the notes with the phone number on it. After digging out Social Security proof of income, retirement proof of income, bank statements, income tax returns… for the applications, things start to blend together. I really don’t know how elderly people, or people who are on their own manage cancer. My heart goes out to them.