Home > Archive: January, 2018

Archive for January, 2018

starting meds

January 24th, 2018 at 09:30 pm

Well, my treatment medicine arrives tomorrow. I'm both in a hurry to start and terrified at the same time. Fingers crossed I can handle the side effects.

Of course, the good news is that the insurance is paying for the newer, stronger, and potentially better medicine. ANd OSU went a step farther to make it cheaper. My copay would have been $80/bottle. But OSU went ahead and got a copay payment card from the drug manufacturer which brings my out of pocket per bottle to $10.

I literally sobbed for a minute when I hung up the phone. I'm so scared this is going to bankrupt my family, but round one has worked out. I consider this the first small miracle.

Now guys, wish me luck. Let's hope the medicine actually works and the tumor shrinks (best case) or doesn't grow (considered good.).

Tomorrow, it all begins.

Small wins

January 19th, 2018 at 10:37 pm

The new doctor and his staff at OSU were WONDERFUL.

My prognosis is still bad, but I left with tons of information, all of my questions answered, and a giant bag full of samples of nutrition drinks (like ensure, but hopefully not as gross to me.)

They didn't mess around.

Sadly, though, my tumor is gigantic, filling my entire left abdomen where my kidney used to be. The liver tumors might not be tumors at all, but something I've always had.

It's obviously aggressive, since it grew back so fast after surgery, but it might not have spread. I forget the terms but it ranked 20 percent on an aggressive type test, which is bad news, but way better than if it were 80 percent.

The dr. is starting me on a more aggressive medicine because I am young and should be better able to tolerate it. It has a survival rate 6 months longer than the other pill.

Of course, the survival rate isn't great. If the treatment works, it only works for about a year, then you have to try something new, and if that works, you might get another year. etc. There are only 4 or 5 things to try, each with diminishing returns, so I'm looking at 2 to 5 best case unless a miracle happens.

I'm still profoundly bummed, but I'll take every good day I can get.

Next steps

January 16th, 2018 at 09:31 pm

Well, I honestly can't say the dust has settled on this surprise diagnosis. We're all still shell shocked. My husband wakes up at 4 am every morning to fold laundry and cry alone. Poor man howls like a fighting cat opera.

We've told the kids we have cancer, but not how bad it is. We'll deal with death when it's more immediate.

I hate hate HATE my current oncologist. He is condescending. He doesn't listen. I have to ask him the same question three times to actually get a straight answer out of him. He refused to give me anything for my nausea on my first visit, because he wanted to run blood work-- the same blood work my regular doctor just ran-- and wait for the results. So, I had to suffer two extra weeks struggling to eat and not throw up.

I don't know. I'm sure he's a wonderful doctor for someone, but not for me. He is just kind of shruggy about my whole situation. I want the guy who's treating me to care more about my cancer and my kids than to just shrug about my prospects.

Thankfully, I have an appointment with the kidney cancer group at OSU cancer center on Friday. I hope to find a doctor who wants to actually help me there. I'll be devastated if I don't.

As for the death prep. Yay.

I'm trying to figure out everything I need to do.
This is what I've come up with, and PLEASE please tell me if I miss anything.

1. Make sure dh is the beneficiary of my IRA accounts

2. Both of the online savings accounts are in my name. I need to put them in his name. He's already the death beneficiary.

3. Write down EVERYTHING for him. All the passwords. What goes in what account and when. Names/ check up routines for the kids doctor's and dentists. Names of the people who've fixed the house. Can you tell I've handled EVERYTHING since kids?

4. Get a will. I need to talk to someone. My name is on the house. Not sure what I need to do about that. Want to make sure there's no doubt where the money should go.

5. Save as much money as I possibly can. Seriously.

In other news, treatment begins next week, with one doctor or the other. I'll need a hail mary, guys. There are only two therapies for stage 4 kidney cancer, so I don't have a lot of options if the first one doesn't work.

Grumpy oncologist says I have six months with either no treatment or if the drugs don't work, and I really have more work to do in life than that.

Thanks for all of your support.

It's back, it's terminal

January 4th, 2018 at 04:52 pm

I had a kidney removed in June, because the doctor discovered I had stage 1 kidney cancer when I went to the ER for a kidney stone.

So, I've been bopping along, recovering from surgery, and happy to be back to normal.

Then...The week before thanksgiving I felt like I was about to get sick-- like I was getting a flu or virus. Feeling tired, got a cough. Wasn't hungry. So I started popping vitamin C and went on with my life, waiting to kick it. I couldn't kick it, so I went to the doctor and she told me I had anemia. So I started taking iron. That didn't fix it.

Then a friend, who is also a nurse, came over and made me go to the ER. She said I looked terrible, I wasn't getting better. I'd lost weight, and I needed answers right away.

I got my answer. The kidney cancer has returned. It grew back in the space where my kidney used to be. And it's in my liver. I'm stage 4. There is no cure for kidney cancer. They can treat me, but the goal is life extension.

The five year survival rate is 8 percent.

So this is it then. I'm 42. I have two kids under 10. I've been the picture of health my entire life. Slim, active, nonsmoker. And my first health problem in my entire life is an incurable cancer.

I'm angry. For the lost years of my life, for my lost plans, but mostly because some dickhead clump of cells is going to cause my children, friends, and family massive, life-altering pain. Because these cells mean I won't be here to help my children grow up.

So now, I guess, the way forward is to prepare for my death.

Make sure my beneficiaries on all of my accounts are up to date. All the passwords and accounts are written down for hubby to take care of when I am gone. And pray for some sort of medical miracle.