Tag Archives: kidney cancer

It’s been a while!

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It’s been a LONG time since I posted. There’s been a lot going on in our world. Some of the best things are the addition of three new grandchildren this year! We were blessed with twin granddaughters in January, and a grandson in August! I adopted a cat last month and we formed an instant bond! I haven’t been crafting as much this past year, because after spinal surgery last year, my lower spine collapsed, accompanied with serious pain. My husband’s kidney cancer came back with a vengeance, and we’ve been busy fighting that battle! We have to make a big decision about whether to try a third type of chemo pill. The side effects are much worse than with the previous medication. We have to think about whether his quality of life will be worse while he is taking the pills. The pills are not a cure. They might keep the new tumors from getting worse, or possibly shrink some of them. Because of previous strokes and heart issues, surgery would be too risky, and some tumors would be hard to access. We are praying that we make the right decision.

Since my mobility has been limited, I have been Pinteresting (is that a word?) like crazy! I have lots of followers! Lately, I have been taking time to click to the original website before pinning, to avoid posting to risky links, or links that don’t have instructions. With over 9,000 pins, I am not close to having them all cleaned up, but I am working on it. My latest craft interest has been crocheting. I am working on getting Christmas gifts done, so I will post pictures soon! My Pinterest boards are listed under Kristy Speer if you are interested. I don’t have my own work on there, but I find plenty of interesting ideas! I have 66 boards and over 4500 followers, so I hope you will check it out!

Mostly good news!

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My husband Ken saw his oncologist yesterday. The Dr. said it is a miracle that the small tumor in Ken’s liver hasn’t grown since he stopped taking Sutent after his stroke in January. Ken will go back on Sutent, and a surgeon will remove the tumors in his liver and adrenal gland. He will have to be on meds after the adrenal gland is removed, since he already had the other one removed. Now we just wait to hear when the appointment with the surgeon will be. Thanks for your continued prayers!

Sutent for Ken’s kidney cancer

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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. 

Ken’s latest MRI

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This morning Ken had an MRI. Since he had his right kidney and left adrenal gland out on 9-29-11, the thought of the kidney cancer recurring is always rolling around in our thoughts. It’s the type of idea that we try to keep in a hidden file in the back of our brains. The concern is always there, and it just pops out every so often. I am sure it shows up in Ken’s mind more often than mine, but my brain likes to remind me frequently, too. The CT scan showed some probable scar tissue on the top of his remaining left kidney. I will be so glad when the doctor confirms that it is just some scar tissue. We have a family member in hospice care for lung cancer right now, and two people close to out family who were diagnosed with cancer right before Christmas. When I see them going through chemo and radiation, I feel bad for them, I pray for them, but it is a scary reminder that chemo and radiation are not a great solution for renal cell carcinoma. It is almost easier to say renal cell carcinoma than the word “cancer”, because it doesn’t instanly sound like that scary “C” word. Renal cell carcinoma sounds like some disease that other people get, not the cancer that my husband has had.

Ken has been cranky and jumpy for the last two weeks waiting for test results. I can’t blame him at all. I just stop and pray when I think about it, and I try to push it out of my mind because the reality of the possibilities is more than I can deal with yet. If the news is bad, I will deal with it then. I could easily make myself crazy dwelling on the possibilities, but I am never too far from crazy, so I will use avoidance for now.

Stand up to Cancer button

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Please click on the “Stand Up To cancer” button on the right side. When you click on the button, money gets donated to help cancer research. My husband has renal cell carcinoma (kidney cancer), my dad died of pancreatic cancer, my mom is a skin cancer and hairy cell leukemia survivor, and my close friend is a breast cancer survivor, so this cause strikes close to home for me. THX!