Drugs Aren't Cheap.

Well he has started the Sutent. So far no side effects. He was a little drowsy today, but he said he didn't sleep well last night and that is why. He found someone nearby who is also taking Sutent and she gave him a couple of tips - take it before bed was the one that stuck with him.

So...HELLO - the base cost for Sutent is $8,295.37!! Dad's retired and on Medicare and luckily he bought some supplemental healthcare and prescription coverage, but even with that he still had to shell out $4500! My husband, Ryan and I went to work at hearing this. Ryan talked to dad's insurance agent and we found out that this is the "max out of pocket" cost. Well it's only *kind of* the max since he will still have to pay 5% of the drug cost for each month of 2010. In 2011 it will reset and he'll have to come up with the $4500 again. I have contacted Ryan's Aunt who is a bigwig in group healthcare and she is searching for some programs and has a pretty good lead on something that may help them out. I am praying for this as my parents are retired school teachers and aren't swimming in money. Please don't get me wrong - no matter what the cost, he is worth it and our family will always come together to make sure that the drugs are available - I just don't want money to be something that causes him stress. He needs to be as stress-free as possible while fighting this thing.

So here's to no side effects and to prescription aid!

Back to Reality

What a fantastic week. Family time is so healing. The fishing was pretty lousy for most everyone (except my husband Ryan). I was lucky enough to be in the boat when my dad caught a big northern pike though! We had several nice days on the lake and several nice walks together. He's ready to start the battle! I can tell his head is in the right place and he's rearing to go. Tomorrow he and mom will head up to Mayo to get a baseline echocardiogram and an ultrasound. Then he will start on his Sutent. Short post today as I have a ton of work to do.

Heading up north.

Bags are packed and the car is loaded! We are heading up to northern Minnesota to spend time with the family and get some fishing in. This will be the first time driving from South Dakota so it will be a much shorter drive than in years past. The lake we go to is exactly 8 miles around and one of my favorite runs in the world so I can't wait for that - no lake swimming this year since I won't be doing any triathlons anytime soon...my bike was stolen.

This will be dad's last "hoorah" before starting on his chemotherapy so hopefully this will be a year to remember with better than average fishing. He's already been making light of everything saying that cleaning fish will probably hurt his cancer so he'll need everyone else to. I think that despite the fact that kidney cancer is incurable - he will never go into remission - we have a pretty happy and light outlook. It won't do anyone any good to be down in the dumps. Positive energy, the unspoken kind, is so powerful.

Since I am the active one and healthy eater in the family, I am taking on the role of his dietician and fitness coach. Will he listen to me? That's still up for debate - he's one of those types who knows everything so I'm not sure I can break through that, but you are darn sure I am going to try.

Well I am signing off for the week. I am sure I will have a lot to say next Saturday. I need to find a higher purpose for this blog since I am done moping...that is my goal for the week. If anyone is reading this - have a great week and thanks for keeping us in your thoughts!

The Verdict.

Well it was an early morning. I got on the road at about 5:30 am to head to Rochester, MN. I met Mom and Dad at their hotel and we went down for coffee at Caribou Coffee in the tunnels (they call it the Subway) of Mayo Clinic. It's like a mall down there! It was hard seeing SO many sick people down there, but encouraging knowing they were all it the best place possible to beat their disease. Dad seemed as chipper and healthy as ever - just a bandage on his arm where they injected the dye for his MRI that he had at 6:15 am that morning. Shortly after we got our coffee, Dad's little sister, Pat showed up and then Erin came and we were off to see the urologist.

Dr. Leibovich is dad's urologist (kidney doctor). The first thing he did was confirm that it is indeed Clear Cell Renal Cell Carcinoma (kidney cancer). The good news was that it is a grade 2. The grade signifies on a scale of 1-4 how aggressive the cancer is. The less good news is that it is stage IV metastatic, meaning it is in the most advanced stage and has spread throughout his body. Considering the fact that he feels and looks great, the dr. advised that we start chemotherapy right away to stabilize and hopefully shrink many of the tumors, then do surgery in 3-6 months. That sounded good to us, but we still needed to meet with the Oncologist (cancer specialist), Dr. Richardson and Gastroenterologist, Dr. Que (for his pancreas). It was a long day - everyone was running behind so we weren't able to get lunch because it was one doctor to the next. Another bit of good news is that the mass on his pancreas is part of the kidney cancer and Dr. Que said it would be no problem to remove it come surgery time and in the meantime, it shouldn't bother him.

On June 28th, he will go back up to Mayo to meet with Dr. Richardson and get started on his chemotherapy. They will be putting him on the drug, Sutent, which doesn't carry the usual chemo affects of hairloss and nausea. They warned that there may be other side affect, but I don't think he'll have any. He's so tough.

That should bring you up to date. We are so grateful for all of the prayers and kindness from everyone. We are all so blessed to have such a caring and loving community, family and friends. EVERYTHING - from the kind words, the prayers, the prayer shawls, the comfort food and the visits mean more than you can ever know. We love you all and hope you will continue to pray for us.

This is all new.

I've never blogged before. I'm not sure if I am doing it right...I've never even really followed any blogs. I've never really even journaled - I'm interested to see if I keep up with this as I rarely follow through on anything. A major personality flaw I am desperate to change.

6:15 this morning, Dad has his lungs and pancreas scanned. 6:15 tomorrow morning will be his head scan. I should be on the road to Rochester by then. Should be about a 3 hour drive. My dad's little sister Pat will be there and I am glad. It's nice to have as much family around as possible. For some reason it helps you to know things will be ok.

Every year my mom's side of the family all travels to northern Minnesota to a place called Cedarwild. We've been going up there for almost 30 years now. My dad has a passion for fishing and the fishing doesn't get much better than at Moose Lake. Dad bought a new motor for his boat this year and has been excited about using it. Above all else, I hope he is able to use it this year. There aren't many things he loves more than fishing...especially fishing up there. Having so much family around will be great too - we have so much fun together. My cousin, JoEllen and her husband Lee won't be joining us for the first time in years as they have some big life changes coming up and Jo just got a new job. I am sad that we won't see them, but understand.

I'd like to take a moment to praise my two very best friends in the world. Heather, I have known since infancy - we grew up together and have never lost touch. She has been amazing with calling me and texting me several time a week to let me know she is praying for my family and to check on me. She has 3 very little boys and still manages to go that extra mile. I totally appreciate that I didn't have to tell her what was going on - she found out through her parents and didn't take any offense that she didn't hear it from me. She's got so much going on in her life, but has been there as much as anyone could be - even spending the night here last Thursday.

I haven't really told any of my friends - I've told Dad's friends, but not mine...I'm not sure why...they've found out though and MOST have taken the time to send me a note on Facebook. I haven't always been the best friend - I'm kind of distant - but it means so much to hear from them - they far exceed me as good people. I will learn from them an be a better friend from here on out. My other friend Jacy - I met in college. I love all of my friends so much I need to do a better job of showing it.

Waiting...

So I live 5 hours away from my parents. Now, for the first time since I was 16, I'm not working...I like to call it temporarily retired. It's kind of a blessing in a way - not having a responsibility to a job and it being summer when this whole thing came about. I have 2 daughters, 6 and 9 so we don't have to worry about school and can up and leave at a moments notice.

Still...the hardest thing is being so far away. When I am with them, I feel calm and confident. He doesn't look or act sick at all. In fact he says he feels great. In a way, it is easier to be in denial about the cancer when I am with him. It's when I am so far away that I get to worrying. I've been having trouble sleeping again. I may need to get some sleeping pills or something because lack of sleep is starting to affect me. Last night I spent half the night reading Deepak Chopra's Buddha and half the night having bizarre dreams about the book.

Well, just 2 days until we find out the staging and get started on a treatment plan. I can't wait - I think that once we are able to start fighting back, I should be able to sleep better. Every day that we wait, these tumors grow and it's driving me nuts.

Reality

I remember when I was a little girl. I had trouble sleeping because at night, alone in the dark, I would fret. I remember breaking into tears one night imagining what it would be like if either of my parents died. I decided right then never to think of it again...it was too painful. I must have been about 9 or so.

I've been lucky to live a healthy life so far and my parents have been healthy as well so it's been easy to keep the "what ifs" on the backburner and not have to face the fact that they, just like everyone else, are human. Now confronted with my father's own mortality, I feel as though I need an outlet - it's hard to talk to anyone face to face, so I am hoping this blog can serve as some sort of therapy and help me through some of the rougher patches.

So here is a short history:

3 weeks ago my mom called me from the emergency room. She said dad had lifted an air conditioner (he's 68 and just had his knee replaced so he should NOT be doing that) and hurt his back so badly it was making him feel sick. They were worried that he may have given himself an aneurysm in his stomach. He was getting CAT Scan when she called. They are in a small town in Iowa, so once the CAT scan was done, they had to email the scans to Iowa City where a doctor could read them so there would be a bit of a wait. 3 hours later, mom called me and said the news was bad. There was a 6cm mass on dad's kidney and a 2cm mass on his pancreas. They were heading home but coming in for more tests the next day. Well long story short, a week later mom and dad, accompanied by his little sister, Pat and her husband Tom were up at Mayo Clinic in Rochester. After a biopsy and bone scan, it was confirmed that he has Renal Cell Carcinoma. The bone scan revealed something suspect on his head as well. They were sent home for two weeks.

This pretty much brings you up to date. We are still in the early stages of diagnosis. He and Mom will be having some more scans done on Tuesday and Wednesday this week - including a more in depth look at his pancreas. Wednesday, my sister Erin and I will be meeting with my parents and their doctors to discuss the diagnosis, staging and treatment options.