Can't Sleep

Hi everyone,

It is Monday morning, 2:00 am. I know I should be asleep since I have to get up and go to work soon. Ken is sleeping, the dogs are asleep and so are my parents. But for some reason, I can't sleep. I have to drive Ken to Denver this afternoon, so I know I need sleep. For the most part, I have tried to stay very positive and brave thru all of Ken's illness, but at times like this when all is quiet and I am alone, it is so tough to stay tough. We had a good weekend and Ken is doing well, but we are still so afraid at times. It isn't always easy to "be normal".

Since we blogged last Thurs, we realized that we can't wait till May 4th to go to Denver. Ken needs to get his pick line re-dressed every week. So we are headed to the Univ of Colo Anschutz Medical Campus today to get that accomplished. We have been having trouble with the pick line for a week or so. The pick line consists of a tube that is inserted into a vein in Ken's arm that has 2 tubes running inside the larger tube. They each have a little valve on the end that allows the med staff to give Ken his chemo and to draw blood thru these tubes. I have to clean the valves every day and put a syringe of heprin in them to keep them from clotting. I have been having trouble with the red one for about a week. Sometimes, the heprin just doesn't want to go in. I play with it and it will finally go, until Sat. night. I have been told not to force it because I could blow out the line. So when I could not get it to go in, we called the U of C hospital oncology nurses and they told us to go to the ER in Fort Collins. So guess what, we spent another Sat. night with the Medical Center of the Rockies nurses. Ken was very nervous and emotional when we got there. He was really worried. They checked Ken's lines and the red one was indeed blocked. They were able to play with it and insert TPA (I think that is what it was called). The TPA worked to dissolve the fibers or clot. Within a few minutes, blood was flowing again. It was such a relief. They sent us home with some saline syringes. Now I have to flush them in the morning with the saline and at night insert the heprine. That should make a difference. It went in very easy on Sunday. So we are back on track.

The rest of the weekend was fabulous. We played cards with my parents. We went out to eat Saturday night. Mango chicken at South China is one of Ken's favorite meals, so we indulged. We were able to skyp with Katy and little Nora on Saturday morning. She is getting so big. We can't wait to hold her. I was able to shop for a bit Sat afternoon with my mom. We went into Babies R Us and talked to them about coming back to work. They have been so understanding thru all this. They are letting me come back to work only a few hours a week. I do miss working there so I am glad they have been so understanding. We had some family in after church on Sunday. My cousin, Jeff Brown brought a ton of food and we had a nice afternoon. Thanks Jeff. Ken was asleep when they got there and he was napping again when they left, so he wanted me to thank them again for coming. We really enjoyed the visit. And a special thanks to my cousins Shane and Dawn for not coming. I know that sounds crazy and we missed them, but their son has a cold and they were very thoughtful to stay clear. Ken is getting stronger, but we are thankful we didn't have to take that chance.

So Ken is going to try to work every day this week. I hope he doesn't overdo it. He can't take a chance on catching anything, so I hope everyone is careful around him. And I think he gets tired easier than he thinks. It will be good for him to work though. He misses it. I just hope he doesn't overdo it. My parents are headed for Nebr yoday to go home and check on things. They have been living in Arizona for the past 6 months, so they are anxious to get home. They will be coming back next Monday to stay with us for 2 weeks to help Ken thru his next round of chemo. I will be busy with Buyback on campus, so it will be good to have the help at home.

For those of you that are praying for us, will you say an extra prayer for my brother's wife, Toby. She was diagnosed with breast cancer last week and we are very worried about her as well. She says it is an early diagnosis, so prognosis is good, but still we worry. I hope she gets that second opinion that was so helpful to us. It is hard to know which doctors to trust, so we hope she is working with experts in the field. We are praying for you Toby.

I guess I better get back to bed. It has been nice talking to you. Hope you all got a good nights sleep and hope you had a great weekend. Bev

Bracelets

Bracelets are here and they are so cute. Ken is touched. Thank you Linda for getting them for us. We are offering them for a suggested $2.00 donation. Here are a few ideas on what you can do with these bracelets:

You can wear it on your wrist

or on your coke can... Just don't forget to take it off before you recyle the can...

You can decorate your mouse.

Or put it on your favorite bear. Any of these choices are appropirate for Ken and his coke, Ken and his Rituxin (Mouse) treatments and for Bev and her love of bears.

What other suggestions can you come up with? If you haven't gotten your bracelet yet and you want one or two or three, just let us know. Linda Carpenter has them in the student center, or we can send them to you if you are out of town.

Thank you for supporting us. We look forward to hearing your decorating ideas. Carol Ann has put them on all of her grandkids. Since we are new grandparents, that works for us too.

Be sure to read the other blog we did today. It was a great day.

Post hospital visit - happy day...

Fantastic day in Denver. We went to Denver today to see both the Thoracic Dr. Weyant and the Oncology Dr. Myint. They both had great news. We started out with Ken getting blood tests and then an X-ray. The blood tests show that Ken's white blood counts are dangerously low, so he will not be able to work on Friday. He needs to stay home and be protected. However, the rest of his blood tests look great, so he doesn't have to have a transfusion this week and he doesn't have to come back for blood tests till next round of chemo. We saw Dr. Weyant first. His assistant took out all of Ken's stitches and said his wounds look great. Then he showed us the x-ray and was very pleased. Ken has a small amount of fluid on his left lung, but it is going down and the doc doesn't think we will have to do anything about it. If after chemo, Ken still has fluid, he will drain it, but until then he said it isn't worth the infection scare. And it is such a small amount, it isn't bothering Ken. Dr. Weyant said that he doesn't need to see him anymore. We can't believe that after all the thorosenticic in Fort Collins, we are finished with that chapter. We are so excited. Ken's right lung looked great. His scar is looking good too.
Then we saw Dr. Myint and his assistant. Dr. Myint said that Ken is doing great. He now has Diffuse Large B cell lymphoma. He studied the biopsy that was done on March 5th in Fort Collins. He explained that at that time, Ken did have follicular lymphoma as was diagnosed, but he had level 3 follicular and he should have been treated with RCHOP chemp right away. Only a level 1 follicular should be treated with Rituzan alone. The level three means that Ken had "bad boy cells" that escaped in the month that he was getting Rituxan. When they escaped, his lymphoma changed to the diffuse. Luckily we started the Rchop in time. The doc said that Ken's cancer is still a stage 3. His bone marrow biopsy came back negative. Had it been positive, he would have been stage 4 and he would have needed a bone marrow transplant. There is still the possibility that he will need one if the Rchop doesn't completely do it's job. The doc said there is a 65% chance that he will not need a transplant. Let's pray that Ken is cured with the Rchop. The doc is confident that Ken will be cured. He said that as long as Ken continues to do well, he only needs to come back on day 1 for Chemo, on day 2 for a shot and again on day 10 for blood tests and a visit with Dr. Myint. We are so excited. It is like Ken has been freed. No more constantly going to doctors. We still have to take his temp twice a day to check for fever, and we have to flush his pic lines and give him a shot. He has lots of drugs to take, but as long as he doesn't catch an infection or virus, he is free of all the visits to Denver. Praise God and ask for protection thru the next 5 months. Those months will fly by and we are so looking forward to kicking this cancer. Ken's weight is still low. He has lost 22 lbs. But he feels good. He is looking forward to working every day next week. And he is looking forward to eating mango chicken at South China restaurant next week. Funny what cravings he gets when he is on a special diet. He is only restricted thru this weekend.
So here is the best news we got today. The doc gave Ken permission to go to Colorado Springs for Mother's Day weekend. Our precious little granddaughter, Norah is getting Christened in a church in Manitou Springs on Mother's day. We were so afraid that Ken wouldn't be able to go. He will be starting his dangerous week, but if he wears his mask, is careful who he is around and watches what he eats, he will be able to go. Best news. We really can't wait to hold her.

Weekend

I have missed a few days so I wanted to catch up with you. I arrived home last week luckily before the storm came. On Friday, we were supposed to drive to Denver for blood work but we were able to change it to Fort Collins so we wouldn't have to drive too far in the weather. All looked good. Sunday was a beautiful day. This was the first weekend that I have not had to visit a doctor, the ER, or any other medical place. My leakage has stopped and I am able to breathe pretty normal. I do still have some discomfort from the actual incision site as I still have stitches. Yesterday, we did drive to Denver for more blood work. This is the period when my white blood cells will drop to their lowest. Since this is only my first cycle, they have luckily not dropped too far. Also the doc's really watch hemoglobin and platelet counts during this period. While there, I was able to schedule my next visit on Thursday, thus saving a trip down there Wednesday and Friday. Each cycle compounds on itself, so while my counts might not drop too much this go round, they could drop more in the future thus requiring me to get blood transfusions. I will just wait and see.
With the beautiful spring weather, I can't tell you how glad I am to be at home finally. Thank you for all of your support and prayers. It is what has gotten me through this so far. Thank you again and enjoy the beautiful weather!

Fundraiser

So, the fund raisers begin... We have 2 items we will be selling. Linda Carpenter has ordered the bracelets that we will be selling. They will be here by the end of April, so we will follow up with how you can get those in a later blog.

But we are going to start collecting donations for the TV right away. We have purchased a Samsung DNC-42" 720P Plasma flat screen HDTV. We will be taking donations for it. One ticket for $10 or 3 tickets for $20. The drawing will be during finals week, 2nd week of May, so that students can purchase tickets before they leave for the summer. It is a $900 TV from Ultimate Electronics. We were able to purchase it at a big discount thanks to sales manager Albert and Ultimate Electornics. Thank you Albert for helping us get started. We got the TV in the hopes of raising some "drug money" (plus all the partial doctor bills and hospital bills we will have to pay). I say "drug money" because we have found that the medicines they are having me take at home are very expensive and only come in three week intervals. Then that cycle repeats for at least another 6 times, possibly up to 8 times. We didn't want to just ask our friends and family for money, we wanted to offer them a chance for a cool prize. And since Bev and I are watching alot of TV these days while we recover from my therapy, we thought a flat screen TV was appropriate. So, if you would like a great prize and a cause to donate, please consider me. I feel bad for asking, but this was one way we thought we could raise some money. Bev will let you know later how and where you can purchase tickets. This would make a great prize for yourself, or birthday or even Christmas present. And please pass the word to your friends and/or family and neighbors. Thank you for your support. Here is the picture we took of the box.

We will be looking for help selling these tickets. We were contacting a few of you to see if you can help. Or you can contact us if you want to purchase tickets or sell them. Thank you so much. We appreciate your participation.

We're Home...

Yes, that is Ken standing in our doorway. He was released from the hospital this afternoon. We are so happy to be home. We will be visiting the cancer center in Aurora at least Mon, Wed and Fridays, an occasional Tuesday and some Thursdays, for the next 5-6 months. So we will be driving to Denver a bunch, but we both feel like the expertise of the doctors there will be worth it. And it will be great to be home in our house at night.

This is Ken in the courtyard at the Univ of Colorado Hospital. It was a beautiful day and the doctor said to get outside. We are great at following doctors orders, so we enjoyed a break in the sun.

This is Ken outside with all his equipment. You can see both his chest tubes coming up over the back of the chair and into the boxes in the wheel chair. To get around, we would put the boxes in the chair and Ken would push the chair. Then I would push the IV pole with all his meds that were attached by lines to his arm. It took both of us to get him around, but it was worth it to sit outside for a little while. Ken was great at getting up and around whenever he could. We walked the halls of the hospital frequently. On Easter, we went down to the chapel for a service at 8:00 am and then after walked clear over to the cancer pavillion. The lobby was empty except for the receptionist, so Ken sat down at the grand piano and played his favorite classical songs for me. I love listening to him play. It was another nice change of pace and minute of normalcy.

Giving back

Tuesday has been a day of giving back. I have been giving back drugs and attachments back to the hospital, as I slowly get disconnected from things because I am closer to going home. I am down to one bag of saline on my pole, where before more than four had hung. And the only real reason for this is for insurance purposes since I am in the hospital. I just have to push it around everywhere I go. Most of my medicine is now by pill form. This morning I lost count at 11 pills. I became nauseous the worst this morning, but was finally able to eat all three meals. Wound up sleeping a lot especially now that Bev was gone to work.
This afternoon I finally met people from the ENT team. They sprayed my nose with a relaxant and then put a camera into my nose so they could see into my throat. I told them that while they may be used to that, I thought it to be creepy. I had to close my eyes because I didn't want to watch. They told me everything they were doing and seeing. I made several noises and sounds, swallowed and coughed, and then they told me what they think. I have a paralyzed left vocal chord, probably from nerve damage done during my first biopsy. The right chord is moving and tries to compensate, but the left is just sitting there. There is a procedure that would be temporary where they can move my left vocal chord over which would improve tone of voice but make my airway smaller. If that worked, they could hospitalize me and make that permanent. Or the nerve might just be damaged and return to working on its own over 6 months or longer. If the nerve is cut, it would probably never fix itself. Their recommendation was to not doing anything yet since so much other stuff has been going on. They are here in Denver so I can do the temporary procedure anytime as an outpatient in the future. Of course over dinner, Bev said since my life has changed, the first part I was loud and now the second part I might be more soft spoken. A real change.
I am preparing mentally for when I see people again. I am different. Thinner, balder, might have to wear a mask at certain times. I can honestly say when I would see people like me I would wonder what is going on and feel sorry for them. But I don't want anyone to feel sorry for me. I am me, just changed. Not for the worse, not for the better, just changed. Through all of your support, I have been able to handle these changes and can continue to do so. I just want to look into peoples eyes and see me for who I am, not what is wrong with me. That has been my life changing epiphany, as I look at those on my Oncology floor around me. I now see them as people also, changed but fighting to survive for their loved ones. I feel as though I am giving back to them the love and support you have shared with me by just saying hello as we pass in the halls or as I look in the rooms and nod. Giving back is a good thing. It means I am almost ready to go home. It also means I have changed my outlook on life and to others. Thank you for you assistance in teaching me to give back.