A new nurse

Monday turned out to be a good day! I realize I now have a new nurse - Bev! No degree, but she is now doing so much for me just like a real nurse. Since Friday, she has been giving me shots, and now today she worked with a visiting nurse at the house and drained me all on her own. As they had put a spigot in my right lung cavity yesterday, we now have the capability to do it at home and not go to the ER or hospital. Not sure if that's the correct way to go but Bev had the process down perfect. She had learned from the Doc who had put in the catheter yesterday. She drained me of almost a couple of liters. The visiting nurse Marlene was a big help and just knowing someone with some experience was here put us both at ease somewhat. Marlene will visit the house at least a couple of more times which will finally cut down some costs being incurred. She checked me out and all my wounds and thought everything is going okay. I also had chemo earlier. Turned out it was a good day. Hope you have a good day whenever you may be reading this!

Weekend Update

We have been all over the board this weekend. Saturday was a great day. Ken felt great. He had a visit from Joyce, Stephanie, Lavon, Bobby and Alex from Oregon. We even went shopping at the mall so that Ken could get some exercise. It was the first day since March 4th that we didn't have to go to the ER or the Cancer Center. It was great.

Sunday, Ken slept pretty well, but he woke up feeling full. We called the pulmonary office and Dr. Wallick called us back. She did not want to drain Ken today as she wanted him to stay full till his procedure on Monday. When we finally made it clear that he couldn't wait, she moved his surgery to 11 am today. We were still a little apprehensive, but she moved forward and inserted the catheter. I am so overwhelmed and nervous about it, but we just have to deal with it now. I hope it is the best for Ken. I still can't help thinking it is just convenient for the docs. Dr. Wallick said she has never seen anyone leak as much as Ken is leaking. I hope they know what they are doing and that it goes well. I am mostly worried about the liquid seeping out of his new wounds. We had so much trouble getting his first chest tube wound to stop leaking and now he has 2 new wounds that are lower and closer to the liquid in his chest. I am going to hope for the best and say some extra prayers tonight. It has been a pretty stressful today.

The nurses taught me how to drain him thru his new catheter. It seems simple enough, just have to keep things very sterile. Ken always told me that as a kid, he had a crush on Dr. Kildare's nurse. Now he is stuck with nurse Bev. Sorry, Ken. It's just me. So far I am giving him his blood thinner shots, flushing his IV that they sent him home with and now I'll be draining his chest. Scary.

We need to hold on for 2 weeks. At that time, we will be evaluating if his Rituxin is working and deciding if he needs additional Chemo. We will be evaluating the drainage and will maybe have surgery if it doesn't slow down by then. Dr. Wallick said the catheter is a short term fix. And at the end of 2 more weeks, we will be evaluating Ken's voice as well. If it is still horse then, they will send him to a throat specialist to check his voice box. She said it may have a paralyzed section in it and they can give it a shot to hopefully fix it. And, as if that isn't enough, his blood clot should be gone by then and they should have Ken on an oral medicine by then instead of his shots. This is good since he gets the shots twice a day and our cost of each shot is $28.o0. Insurance paid an additional $40 some dollars a shot. Really expensive.

We are trying to stay positive. Ken has been amazing. It has been especially hard for me today. I'm so worried about him. Luckily with the surgery and the drugs they gave him, he has slept most of the day and has not seen my tears. I have tried to be very strong for him, but today was the hardest. I just can't get over being scared. I think after I say my prayers tonight and get some sleep, I will feel better. Thanks for saying prayers with me.

Many people have called and let us know that this blog is helping them stay informed. But if ever you have a question and want to know more info, or if we don't quite explain things well enough, please don't hesitate to ask. You can call, email or blog us. But most of all, keep us in your prayers. Thanks for everything. Bev and Ken

Spaghetti

Isn't comfort food amazing? Something so simple as a favorite food can make you feel at home and normal, if only for the moment. My most favorite food is spaghetti. Meat and mushroom sauce. French bread, Italian salad. I can't have all that now but I'm going to eat spaghetti tonight. Today has been a challenging day. I started off with chemo at 8 after waking up at 4. My good friend Bob took me to the CCR. I was having trouble breathing the entire time but I knew the plan and knew a drain was coming after chemo. Bev took me to PVH around 1 for the drains to begin. However, while still at the CCR, my doc had ordered a ultrasound for my arm that still hurt from last Sunday. This would occur at PVH after the drain. My doc at PVH said that he had changed his mind and was only going to drain my right side, which he had just done the night before. This time they pulled 3 1/2 liters off my right side. He also ordered an extra cat scan in addition to the before and after xrays I normally get during a normal drain. So first stop afterward was the ultrasound for my arm. Then the cat scan, then the xrays. During the cat scan, they told me not to leave the hospital until I talked with Dr. Kanard, my Oncologist. Turns out I now have a blood clot in my arm. She had given us this possibility while at CCR and showed Bev how she would have to give me shots in my tummy, thighs or arms. Now we knew this is the way it is, so then we headed off to Walgreens. Once there, they didn't even have more than 1 1/2 days supply in their store. So we bought what they had as I have to start right away. Then they told us the price. Over $280 for a 5 day supply. We asked if that was after insurance and they said insurance paid over $400 toward the cost. $700 for 10 shots. And now I have an outpatient surgery planned for Monday to install a catheter into my right lung so that I can open the faucet and drain at home as needed. The risk of infection is a tossup compared to the risk of infection of continually being drained every 36 hours. Unbelievable. I just hope I can make it to Monday without another visit to the hospital. I can only suggest to do one of two things: don't get sick - or know what your favorite comfort food is! Mine is on the stove now - can't wait!

Double Dip

Hey guys, keep Ken in your hearts this afternoon. The docs are going to drain both lung cavities after his Chemo today. He is about a third full on the left side that hasn't changed since he left the hospital. They are going to try to get it all out today on both sides in the hopes that he will be able to go through the weekend without a visit to ER. He should feel better with both lungs expanded. They drained 3 bottles off his right side yesterday. We have not had a day without hospitals since March 4th. Let's hope today is safe and tomorrow Ken can stay home. We will add more later to let you all know how it went. Bev

Wed, 17 Day Survival Update.

Hi Everyone, This is Bev. I have decided to give you all a lesson in reading nutrition labels. Here is what I learned this week. Ken is on a high protein, low fat diet, so we are reading labels like crazy. He is supposed to eat things below 20% fat or at least 25%. But when you read a label and it says 5 grams of fat, 17%. Be careful because the fat % listed is actually the total % of fat in a daily allowance, not the % in this particular product. Sometimes the label will say 100 calories and 20 calories from fat. You can use these two numbers to figure the fat % in this product. It would be 20%. But if it doesn't list fat calories, you have to take the grams of fat, say 5, times 9 (always times 9), it would be 45 and that is your fat calories. Then compare that number to the total calories in the product. If it is less than 20%, Ken can have it. So there is your lesson for the day. I am going to let Ken take over now and catch you up on what has been happening since Monday. Love you all. Bev

Okay, this is still Bev. Ken has been so busy answering emails, he's too tired to post tonight. But I want to give you an update. Ken is still doing his Chemo and we have been trying to stay hopeful. Monday was his half way point. So we celebrated by letting him go to work on Tuesday. He loved seeing everyone and had a good day. He worked for about 4 hours. But then we ended up in the ER at PVH at 8 PM to get his usual drain. We had a new Dr., Dr.Petrun and he was great. He used Ken as a training tool for all the students in the ER so we learned a little more about what is really happening. He told the students to look at the bottles of liquid and told them they probably wouldn't see it again, since this kind of leakage is rare. The doc was great to Ken though. He was quick and to the point, and didn't hurt him as much as usual. He was smooth. He said he had been doing these for about 30 years. We asked him his opinion of putting a catheter in so we could drain it ourselves and he said we shouldn't. The risk of infection is more than doing the drains. So we are just going to expect to have the procedure every 36 hours and we can deal with it.

We did have another scare. The oncology called on Tues to say that Ken's blood work showed some liver malfunctions, whatever that means. So we were in the imaging center at 7:30 today, Wed for an ultrasound. We were anxious about it, so during chemo, we had a chance to talk to his oncologist. First, the ultrasound came back great. All his lower organs looked great. No gall stones, no liver problems, they listed about 7 organs and all looked great. We were relieved. Then we talked to Dr. Kanard about expectations. Can we expect or hope that this will be cleared at the end of his 12 treatments? She showed me a pet scan of another patient of hers, before and after the same treatment. Her before looked a lot worse than Ken's and her after looked clean. After only 4 weeks. She is hoping for the same results from Ken. Let's hope. It gave me new hope. Keep praying. We are hearing your prayers.

Also, Ken is happy tonight. I took his mom to the store tonight and came back with fat free ice cream for him. He said it tasted like soft serve which he loves, so he is a happy man. I am happy too because I haven't been able to keep him fed today. He is eating everything I put in front of him. It is nice to see his appetite back. He is drinking water, Gatorade, caffeine free tea and lots of protein drinks. He has been a great patient today.

Ken is expecting to need a drain early on Thurs, and then he wants to go to work. He wants to make the management meeting at 1:30. Which will be great, because I can get back to work too. So that's our plan for Thursday, unless it snows in Winsdor. (That was Ken's inside joke for some gal that lives in Windsor, and it's not our daughter. But she knows who she is.)

And last item.... drumroll.... the correct answer to the current poll....
One treatment of Rituxin, just 1 four hour drip, 1 day, costs $ 7,150. Can you believe that? That is $85,800 for this first round. And it will be at least another $28,600 every 6 months for another two years. We were shocked. Can't imagine how much all these ER visits are going to add to that. But we went there just for fun so you could guess. We aren't really thinking about all that just now. Luckily, we have good insurance that is covering most of it.

Have a great day. Hug a friend today. Tell someone you love them and enjoy the snow if it comes. Bev and Ken.

Spring Break

So let's entertain Ken. Please add a comment and let Ken know what you did on Spring Break. All stories welcome.

Weekend Update

This is Bev, writing to catch you up on Ken's progress. WE ARE HALF WAY. Ken is sleeping at the cancer center right now as they drip benadryl and Rituxin into him. I am sitting with him, waiting to talk to his doctor. Today is the 6th of 12 initial treatments. Yeah. I read his post from earlier today and realize he is trying to stay positive and doesn't want to bore you with the technical stuff. So guess that's my job. If you don't want the nitty gritty, skip this post. But for the kids and the others that want to know, this is what really happened this weekend.

We had a great Sat. Ken rode around with me while I went to the bank, the post office and then we went to Lowes. I put him in the wheelchair and pushed him around. He was very emotional and couldn't quite get a handle on it, but being out together was great. We stopped for a grilled chicken salad lunch and then went home for a nap. During dinner he said he was starting to feel full in his lung cavity. I was hoping we could have 1 day without going to the hospital, but no luck. We were at MCR from 9:00 - 12:00 PM. They drained 4 bottles and he felt better. We thought it would help him feel better like he did on Sat am.

But Sunday, he woke up with his right arm hurting and it was swollen, so we called the surgeon and ended up at PVH by 10 am. Ken was told it was an infection, probably in his surgery site, or his chest tube site, so he had to elevate his arm and put a heating pad on it for 24-48 hours. They gave him an antibiotic and made him stuck to the chair for the rest of the day and it was hard for him to do anything with only 1 arm. But we had a nice visit from Heidi and Xander and Ava. Heidi is a nurse, so she gave us some advice on him headaches and his infections. And it was great seeing the kids. Ava is adorable and Xander was very well behaved. He is a good kid.

But the highlight of the day as Ken said in his letter was the web viewing with Katy, Mark and Norah. It was so fun. Ken and I were both crying and so happy to see her. She has grown so much. We wanted her to just come thru the computer so we could hold her. She won't even know us when we get to see her next. At least now we have figured it out and can see them more often now. It was great. Her first formal pictures are on the way and we hope we get them today. It made Ken very happy to be able to see Norah. Me too.

Then this morning, Ken had to be at MCR for another draining at 7:30 this morning. Dr. Peters took just over 6 bottles of fluid out of him. Then we came here for his chemo treatment. They are running his blood platelets here and told us his protein levels are very low. Go figure. All his protein is going into the bottles they are draining from him. So, I have to push more protein drinks which he really doesn't mind, but he is sick of them. He misses his Coke. He can have Coke, but understands that the caffeine isn't helping him, so he hasn't had much for a couple of weeks. I have been making him decaf tea, but he can only drink so much tea and water and protein drinks. We have tried Gatorade, smoothies, and odwalla chocolate protein drinks. That seems to be his favorite.

We are hoping that he can get some rest today and come to work tomorrow for a couple of hours. His doctors say that if he is feeling strong enough, it will be good for him. So we'll give it a try. I hope he just sits in his office and catches up with his staff.

That is the nitty gritty of it all. We are taking the steps to get him healed. If you know of any great high protein, low fat (20% or less fat is best), meals or drinks, let us know. We are open to suggestions. We stopped into Supper Supers on Sat and they have some meals that look good, so we may start getting a few of those. Ken never has liked my cooking, or maybe it's me that doesn't like to cook. Maybe both. It is mostly hard to get Ken to eat. He gets distracted and not interested. He is trying.

Well, we are almost done with the 6th Rituxin. We are waiting till tomorrow to find out what the pulmonary experts want to do with Ken. 13 of them are meeting tomorrow to talk about Ken and his leakage. They are talking about putting in a catheter that would allow us to drain him at home instead of going to the hospital every other day. (We actually made 6 trips there in the last 7 days.) The catheter sounds great, but there is a big risk of infection with the chemo Ken is getting. So having a foreign object in him is a little dangerous. The 13 docs are discussing it and hopefully will make the right decision. So we will let you know how the week goes. Hope you are all having a great day. Email us and let us know what you are all up too.

Love to you all, Bev and Ken.