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.

Analysis

Monday is drawing to a close, and all day my word of the day seemed to be analysis. One of the reasons I love to work at CSU is you get to analyze different opportunities, situations, areas of concern and then do something about them to make the situation better. My analysis of my personal situation is that I have changed, and to some extent can control how I change, yet in some aspects I can't control at all. Such is life.

Sunday started my first round of the new chemo regimen. Now diagnosed correctly, this is a harder form of chemo to fight a more aggressive cancer than I originally thought I had. This will go only 1 day every 21 days. Days 2-6 they say I will feel okay but maybe nauseous. And sure enough today I have felt that way several times. Days 7-14 will be the toughest days as that will be when my white cell counts are at the lowest and I will be more susceptible to infections. This will compond each cycle so they say I will get the most tired during this segment. Days 15-21 will be the best where I should feel the most normal. Then the cycle will start all over again. At least 6 cycles, possibly 8. The nice thing is that after every 2 cycles they will do a PT scan and be able to track progress of the chemo treatments.

Tuesday hopefully I will meet with a ENT doc who will examine my voice. Since my leakage is not my main problem now, and I am on the correct chemo regimen, my voice is now getting attention. Some concern has been expressed about one of my vocal chords being paralyzed. But we won't know for sure until the examination.

Bev and I have decided to have my future chemo treatments here in Denver instead of Fort Collins. This way we will be around all the doc's who have fixed me in case we have any further questions. Part of analyzing this whole life changing experience is when it all hits and you have no idea of what to do, you just have to follow your gut and pray. Finally prayers were answered when we found the doctors here at U of C Medical Center. In one week, I have stopped leaking and I am feeling better. I am so thankful of that. But the best part of analyzing this past month and a half is that the support you have shown me has changed me forever. Those of you who have visited, signed cards, sent things, volunteered to clean, you have touched my heart in a way that I never knew existed. I would not say I came from a close knit family growing up, but now even my siblings and I are talking again. It is a wonderful feeling to know someone cares for you, much less as many people that have shown me support. My wish is that I will somehow be able to pay forward the kindness you have shared. This past Easter Sunday, Bev and I were able to visit the small chapel here in the hospital. A very small gathering, no large choirs or formal wear. Just people celebrating the holiest day in the Christian faith. I was brought to tears just in the fact I was able to be there. I am a cancer survivor. Soon I might lose my hair. After seeing so many others who have gone through this before me, I almost feel I want to join them and show a chrome dome. I have physically changed as at one point I lost 22 pounds. Each day my weight changes so that alone has become a game to see where I will be. And I can tell you that I have had so much tape stuck on and ripped off that I don't have hair where I used to. My analysis of that: buy stock in medical tape. I hope you have a great day!

Moving forward

It is Saturday night and Ken is doing very well. He had an eventful day yesterday. Let's see, he had 2 x-rays, a heart ultra sound, a torso cat scan, bone marrow biopsy and they removed one of Ken's chest tubes. It wore Ken out. During the evening, my son, Jeff and his wife Sara came to take me to dinner for Jeff's birthday. We left Ken to have a nap and then we returned for birthday cake in Ken's room. Ken was asleep soon after. Today, we have learned that the ultra sound looked good, but we won't get the rest of the results till next week. We also learned that Ken is not a candidate for the drug study that Dr. Myint wanted Ken to join. He can't take part because he has had too much Rituxin. That bummed him out, he was looking forward to being a part of it.

We had a visit from our daughter Stephanie and Heidi and her little Ava. It was great to see them. We had to go to the family room to visit because Ken can't have any kids under 12 in his room. They put him on the bone marrow transplant side, so there are different rules and regs here. We are learning more about Ken's prognosis and his path we are about to start. We have a schedule now at least, so we should be able to figure out his good and bad weeks. He got his 2nd chest tube out just now, so he is probably going home soon after his chemo. Yeah. We are hoping that happens Monday or Tuesday. We don't know yet, but they may start his chemo on Sunday, or Monday at the latest. The sooner they do it, the better for us. Ken was just talking to me about life without chest tubes and without leaking in his lungs. He can breathe. What a concept. And he will be able to breathe tomorrow and the next day too. Ken says, "It's a miracle". He is now laying flat in bed and watching "The 10 Commandments" while he recovers from the chest tube pull. The miracle is that he is laying flat. He hasn't slept laying down since early February.

So here is what we know about his life with chemo. For one thing, he can't have any live flowers or plants around once he starts, so thank you all for sending them in the past. They were beautiful. Ken's chemo will be in 3 week cycles. He will recieve the RCHOP chemo drugs on day 1. Then from day 1 till 5, he may have some nausea, but hopefully, the counter drugs will help. Then from day 7 - 14, Ken will be restricted quite heavily. He will have to stay home, eat only fresh cooked food, no uncooked food or left overs. This is the period when his immune system will be the weakest, so he will have to be careful then. But for days 15 -21, he should feel pretty good and be able to function somewhat normally. Then it starts again with another day of chemo. This will happen 6 to 8 times for about 6 months. I think Ken and I are in agreement that we want to come to Denver for all his chemo appointments. We both feel safer being treated here. At least he will be home in between. So we are waiting for chemo to start, we are waiting for the pain to stop from his chest surgery. But at least the healing has finally started. Weare on the road.

Bless you all on Easter. We are hoping that you enjoy a wonderful day of blessings with your families. We miss you all. Happy Easter. Bev and Ken

New Room

Hi All,
This is Bev again. It is early morning on Friday and we are in our new room on oncology, room 1135. First let me say Happy Birthday to our son, Jeff. Today is Good Friday and Jeff was born 26 years ago on Palm Sunday. Hope you have a great day Jeff. We Love You.
So, we didn't get to our new room till 9:00 last night and Ken went right to bed. But I stayed up getting his room organized and finding things on the 11th floor. I think when Ken gets up and starts moving around today, he is going to have another culture shock. It doesn't take long on this floor to realize he is a cancer patient. I think that will settle in very soon. They aren't as keen about Ken walking around once he starts Chemo. They have an exercise bike in his room and they can bring in a treadmill. I think the bike might be hard with his chest tubes, but he should be able to do the treadmill if it slows down enough for him. I found him a new meds pole last night that I think I can rig his chest tube boxes too. That will help make him more independently mobile. We will try it later this morning.
We have a lot going on today, heart ultra sound, blood work, bone marrow biopsy and I'm hoping to push for an ear, nose, throat guy to see him today. The speech therapist visited him yesterday and he said we shouldn't wait three weeks till Ken gets back to Fort Collins. Hope we can get them to come to him here.
So people have been asking me how they can help us and I need a few things, so I am just going to ask.
Is there anyone out there that would do half Ken's paper route till the end of finals week? It would pay $30 a day and it is only on campus, 8 stops at dorms, library, etc. It would be from 6 am - 7:30 am. There are a couple stops that don't open till 7:00, so starting earlier wouldn't help much. Please call us if you think you can help.
Also, I am going to try to work next week, but would like to have help driving up to see Ken in the late afternoons and evenings. We can bring my car, but I was hoping to have a driver for a couple of nights so I can rest during the drive. Let me know if you'd be available for this.
And, I hate to ask for this. But I was wondering if there are any of you that might do a marathon clean day for us next Saturday, the 18th. My parents are coming to town on the 19th and I thought maybe friends that have offered might consider coming over all at once for an hour of major cleaning at my house. I just don't want to stay there this week long enough to do it. So maybe we could meet there at about 10 on Sat. Let me know if you would be interested. It is amazing how dirty things can get when you aren't even there. I run in and grab stuff and dump stuff and haven't been able to do any cleaning. My parents can help when they get here, but I'd sure feel better having it clean when they arrive.
The other thing is the fund raiser that we are trying to get started. We have 3 ideas.
We are going to buy some red rubber bracelets to sell for $2 each. Linda Carpenter is going to order them and we need to know how many to order. If you think you could sell some for us, please let Linda know or myself and we can get some to you. Ken wanted them to say "Have a Coke and a Smile". Linda is checking to see if we are allowed to use that slogan. We may have to say have a coke and a grin or laugh. I hope they let us say Coke. Let us know if you want to sell bracelets and how many you want.
We are also checking on getting a big flat screen TV to raffle off. It will be from Ultimate Electronics and we want to end the raffle during finals week, so be looking for something in the blog soon about this. Hope we can get the legal stuff worked out so we can do this.
We also thought about raffling a timeshare weekend or week. There would have to be some coordination with the winner as it takes a bit to set up the time and place. But it could be arranged. We are still thinking about this one.
Well the first doc just came in the the others will be in soon, so I better finish getting ready for the day. Have a Great Good Friday. We are basking in God's Glory this morning. Bless you all. Bev and Ken

Complete Diagnosis

Well, we spent 30 minutes with Ken's new oncologist, Dr. Myint, pronounced mint. We were given an anatomy lesson in lymphoma. It turns out as we suspected. Ken's lymphoma was mis-diagnosed. He actually has Diffused Large "B" cell lymphoma which just means that we have to get more aggressive in fighting it. But now we know why the Rituxin treatments didn't seem to help. We are staying in Aurora under Dr. Han Myint's care for the time being. We may finish the treatments in Fort Collins, but for now, they are keeping Ken here. They will be moving him sometime today up to the 11th floor, oncology. He will spend the next 2-3 weeks there. Bummer. But in light of Ken's leaking issues, they want to give him his first chemo treatment in a controlled environment. They will watch him for at least 2 weeks, maybe 3 and then if all is well, they will take out the tubes. For now, we are just going to go at this a day at a time. We will know more in a day or so after more meetings with the doctors and more testing for Ken. Just wanted you to know what we are doing. We just met Melissa, Dr. Myint's nurse practicioner that will be working with us for the next couple of days. She was very informative as well and answered some of Ken's burning questions. Wow, we knew this. But now that we really know it, wow. We are thankful that we are here with these doctors. THANK YOU AMY CRAIN for helping us find them. God has been working in miraculous ways to lead us thru it all. Thank you for asking Him to help us. We couldn't get thru this without His support and all of yours. As the lunch room lady says to me every day as I pay for my meal, "Have a Blessed Day!"

Hurray for liquids.

Good Morning everyone,
Ken and I were up before the sun today. We went walking the halls about 6:30, looking for a window to watch the sunrise. We went down to the lobby and back, then circled our floor. Ken is starting to walk a little better. He has been moving pretty slow up to now, but he did great this morning. Our goal for the day is to improve his breathing and to walk more often. He is so used to breathing shallow since his lungs were filling up, he is having difficulty breathing deeper. But we are working on it. Yesterday we were able to go outside in the courtyard and sit for a spell. It was a beautiful day. Ken sat in the sun, but I took to the shade.
The docs came in last night and told Ken they aren't in a hurry to take out his chest tubes. They want to feed him a high fat, creamy meal that will create the cyle liquid his chest used to leak. They want to see if it finds its way into his chest. The hope is that it won't. Then we will know that the operation has been a success. But there isn't any science as to when is the right time for that, so they are letting him continue to heal first. They expect to feed him the test meal in a few days. Until then, he gets only water by mouth and his big yellow bag drip for nutrition. It is amazing to me that he is just starting to talk about and miss food. He is planning meals.
Since they aren't going to feed him for a few days, it is pretty inevitable that we will be here another weekend. When they were talking about the surgery, before they did it, they told us Ken would be in the hospital thru the weekend. I guess we should have asked which weekend. We really wanted to be home by Easter, but maybe not. If any of you are in Denver, you are welcome to stop by and say hi. Ken lights up when anyone comes to visit.
We are waiting for the docs to come in this morning. I am hoping that they will have news about his cancer biopsy. I talked to oncologists nurse yesterday and she thought the report would be finished today. We are hoping that the oncologist visits us so we can find out the plan for fighting this. What is next? Where do we go and what will Ken have to go thru. What are we really dealing with and what can we expect for recovery? Nothing less that complete, but how do we get there? We have so many questions. But for now, we wait...
Ken is taking it in stride. His pain meds are helping and he is in amazingly good spirits.
Well scratch the above meal plan. The doc just came in and changed their minds. They are starting Ken on a regular liquid diet today. He gets to drink his meals, even milk. They want to see if he starts leaking. I can't believe Ken didn't ask the doc if that included Coke. He wants me to go find that liquid meal menu, so I better sign off for now. Hope you all have a great day. I don't know what Ken wants to drink today, but I'm ready for a margarita. Bring it on.

Tuesday update

This is Tuesday, and a gorgeous day in Aurora. Woke up about 5 and watched the sunrise from my 9th floor window. Pikes Peak is covered in snow, as are the other high mountains and the foothills are dusted with snow. Yesterday afternoon we had a nice visit from Don and Linda Kaufman, fellow grandparents of our precious Norah who happened to be in town. It has been a slow but eventful day today. Much slower pace than yesterday as to procedures, etc. Did start off with a xray, but then nothing else till this afternoon. So I went for a walk with Bev around the floor. When I say walk, that is just the technical term. We have to put my chest tube buckets into a wheelchair, along with my catheter bag and drape the hoses over the back between the wheels. That is what I push. Bev handles the rack which has the four bags of stuff attached to my Picc line and the five machines that control them. She handles that, plus holds the cords as we walk around the floor. Sarah, my nurse today, said she was so happy that I was going around so much considering the invasive surgery I had last Friday night. That made me happy. Then my Doc caught up with us and told us everything was going good so far and that he wanted to try tomorrow to remove one of the two chest tubes I currently have. Later, they said they could remove my heart monitor and catheter. The heart monitor was heavy and sat in my pocket. It was attached to five different spots on me adding to all the tubes going everywhere. To take that all off was great. Then because the epidural is now gone, they released me from the catheter. For all you men, you know what that means. Of course the challenge was that I would have to urinate within 8 hours or would have to reinstall it again, which had happened in PVH the second time. Very painful. So out it came. Because I am only drinking water and have four bags of stuff attached to me, I hoped for the best. Sure enough, in only 45 minutes I had to go passing the test. You can't imagine how relieved and happy I was. So now, just my Picc line and the two chest tubes is all that remains. Hopefully only one tube tomorrow. So progress is happening. And while still taking pain pills and a pain pump, I am feeling good. God has blessed me almost a month of being a cancer survivor and I can honestly say I could not have done it without Bev, family and you who read this. Your support comes to me in so many answered prayers that I feel as though I am living a miracle. For sure I am living a different life than I had in February. Thank you all for everything you have done. I was telling a chaplain about all the kindness and caring you have shown to Bev and I and what he said was true. He said it is like love, the more you give out, the more you get in return. I hope to repay your kindness by sharing with others when I get out of here. Have a great day! Give someone you love a hug, or at least a call!

Bananas

It's Monday noon. I am at the University of Colorado hospital on the Fitzsimmons campus in Aurora on the 9th floor. What a view. I can see all the way to Pikes Peak. Nothing like the view of snow covered mountains to make you smile. That's why a lot of us live here, eh? Today has been catch up day. Seems like nothing happens here over the weekend as the Buffs must take weekends off. So this morning started with an XRay, then the doc's visited, then I cleaned up, then another ultra sound of my right arm to verify the blood clot, then a blood draw, then the installation of the PICC line. All by 11. With the installation of the PICC line, I might actually start getting fed through an IV. I have only had water since Thursday night. Now I can't even remember my last meal! LOL! I just know it wasn't spaghetti! The PICC line goes through a larger vein from my left arm, across the chest, and drains into a main valve by the heart. It can stay in your arm for up to a year or longer. You don't really see it unless you look for the white thing coming out my left arm around my inside elbow with two ports, one red and one gray. LOL! I will be able to take chemo through this so no more sticks. And they can draw blood easy. That is unless they change the chemo regimen to a stronger stuff; then I will need a port buried under my skin. Melanie my nurse just informed me my food through the IV is called TPN. I asked if it is flavored and Bev told her I love bananas. Then Melanie said it is yellow so I am guessing it is banana flavored. Yum! Funny but I'm actually not to hungry. Although I watched Rachel Ray and really would like some turkey chili or pizza! Yum! The weird thing is my stomach is bloating out so they are trying to resolve that. If they would ever let me eat real food again, I'm sure it would correct itself. Looking out the window it looks like a beautiful spring day! I hope you are having a great day! Thanks for your support! It means so much to Bev and I!

Superstar

SUPERSTAR. That is what one of Ken's doctors called him this morning. He is doing GREAT. The nurses had reserved a room in ICU for the night for Ken, but he did so well in recovery that they decided to put him in a regular room on the pulminary floor. He is in room 917. But we had to wait till his room was cleaned, so we didn't get here till after 11:00 PM. The recovery nurses were great though and they let me stay in with him the whole time. By 10:00, we were both asleep in recovery. It was a long day.
Ken has 2 chest tubes in his right side, one up high and one down low. He has been leaking clear red liquid which is expected, blood from the surgery. The doc was very pleased to see no milky white stuff. So are we. He still has his epidural in his back where they are administering pain meds and he is in some pain, but not unbearable. They are going to put a pick line in him and feed him thru that for a few days. So still nothing but water. They want his system to not have a chance to make any milky white stuff till after his lung cavity has a chance to heal. He is actually sitting up in the chair now. Probably will stay there most of the day. I think he is psycologically still afraid to recline very far and his bed doesn't sit him up very well.
The doc said that he needs to expand his lungs as much as possible so the lung would adhere to the lining of his chest wall and to his ribs. The reason for scrubing the lining and for the baby powder was so the lung would stick to it and then create scar tissue to stay stuck. So, if the liquid tries to come back, it will not be able to shrink his lung and will need to go somewhere else. Hopefully, it will just be absorbed into his body. If the docs are pleased, so are we.
He said he saw the place that the previous surgeon took the biopsy from. He sewed it up as well as the places that they removed the 2 lymph nodes yesterday.
The hospital is the University of Colorado Hospital, 2 years old in June. His daughter Anna made the comment that the Buffs were saving him now. LOL. His room is in the front and we have a great view of the city. The lights were beautiful last night. I hear there is a bunch of snow in Fort Collins this morning, but not to much here. I hope it clears up some before we leave so that we can see the mountains. The windows cover his whole wall, so we have a great view all the way south. And from the end of the hall, you can see all of downtown and the mountains. Ken will be happy when he gets to walk down there.
Hope you all have a great weekend. Can't call Ken Squirt or Gusher any more. Now he is Superstar.

Surgery is finished

Ken's doc, Dr. Weyant, came out and his surgery went fine. He said he removed 2 racketball size lymph nodes. He said with lymphoma, you actually need lots of tisue to get a true reading of the type, with other cancers you can take just a small biopsy. So we should know early next week about his cancer. He also sewed up the duct where the fluid was leaking. They did a little test to see if they could see another leak and didn't see one, but they will keep him here till at least Monday to see how that goes. They scrubed the inside of his lung cavity so that the lung would adhere to it. He said he even put baby powder in there to keep his lung cavity from collecting fluid again. Weird to me, but hope it works. He is not going to get any food or drink for a few days, till they know if this worked. So somebody go have a prime rib for Ken. They are going to give him stuff in an IV. I still haven't seen him and I don't know if he will be in ICU or not. The doc said it would depend on his pain. They did a lot to fix him up. Doc said he has already been thru enough this month, he wanted to fix everything while he was in there. So... we are still waiting. It will probably be a long weekend. I will continue to let you know how he does. Thank you for praying for us and Thank God and the doctors and nurses for taking care of Ken. Bless you all. Have a Blessed night. Bev

Progress

Hi everyone, Ken's surgery has been delayed. He actually just went into the OR at about 4:00. They say it should be about 2 - 2 1/2 hours, so I will get back to you as soon as we know anything. They originally asked us to be here at 10:30 and Ken didn't get to eat after midnight and he couldn't drink anything after 8:30. So you know Ken, he wanted something to drink when we got here. Then we waited till 11:30 when they came out and told us the doc was running late from his first surgery. They told us to come back at 1:30 and told Ken he still couldn't eat or drink anything. By 3 when they were finally prepping him, he was ready to cancel and come back tomorrow so he could go have a drink. But he stayed and all is well. His pre-tests went well. For all you women out there, they put an epidural in his back. They said so they could control his pain. They already warned us that they might be in ICU (Intensive Care) for at least tonight. We'll see when he comes out of surgery. I'll write more later when I know more. Eat and drink something fun tonight in Ken's honor. Love you all. Bev

Truth

The truth. Isn't it amazing, you always want to know the truth but sometimes it is a hard pill to swallow. Sometimes you enjoy the sugar coating of bad news but the truth always comes out in the end. Since my last writing, I have had some good days. Now that Bev was able to drain me at home, I have felt comfortable. I went to work on Tuesday and talked so much that on Wednesday my voice changed a little for the better. So thanks to everyone who kept me talking! On Tuesday, Amy Crain from the bookstore shared her experience with us as to her sons' same type of leakage and the doctors who fixed it. She even went so far as to email his doctor, who wrote back and recommended a doctor who might be able to help me. Through several emails, Dr. Weyant from the University of Colorado Medical Center Anschulz Cancer Pavilion wanted to see me so we went to visit him today. He is a specialist in thoracic medicine and had a procedure in mind that might help my leaking problem. After consultation and discussion, these are the facts I learned. I could continue with the current treatment of Rituxin and continue to drain and hope it heals itself. However, after also consulting with Dr. Mynt, a specialist of Lymphoma at the same location, he believes we might have misdiagnosed my type of lymphoma. With BCell follicular, he says there are three types of that, mild, medium and hot. He believes I might have more hot cells than previously thought causing me to not be responding as fast to my Rituxin treatments. Dr. Weyant wants to do four things in a surgery now scheduled for Friday in Denver. First, do another biopsy for Dr. Mynt to get a more informative diagnosis of my lymphoma. Second, he will clamp my thoracic duct closed close to my intestines. This is a procedure which then should prevent further leakage into my lung cavities. This is a permanent change. While not perfect, he said he does not know of any real long term effects occurring from this procedure. It will definitely change my diet at first, and maybe forever, but I will have to cross that bridge when I come to it. Third, he will clean out my lung cavity because there has been so much fluid in there and he wants to make sure it doesn't bother me in the future. Last, he will remove the catheter that is my current drain and replace with a chest tube similar to what I had the last time in the hospital. This will remain until they are sure the procedure worked. Which means I will be in the hospital at least over the weekend. Last time I was told that I wound up there for 10 days. I must admit I am somewhat scared again. Like starting all over. And to have a procedure that will forever change how my body was originally designed to work is daunting. But in my heart, a prayer answered lead us to these specialists who seem to know what they are doing. So I have to go with it. It seems somewhat strange that during the morning I worked on campus and I felt so normal. Now tonight I know what is ahead of me and pray that I can handle it. It is worse than originally thought, but with your continued support, I again can make it back. Like Dr. Weyant said, I'm young and need to fight this more aggressively while I can. To dance at Norah's wedding, I have a tougher fight ahead, a new do over, but I will do my best. Everyone has been so supportive, I can't thank you enough. Pray for Bev to get through this, as she is a real trooper. The truth. Good to know, sometimes hard to swallow, but for the best in the end!

This is Bev... Just to add. Ken's surgery tomorrow is at 12:30. I do not know how long it will last, but my son, Jeff is going to come and sit with me. Either he or I will get on the blog and write as soon as we know anything. We were very impressed with the doctors in Denver, but again, we are just throwing ourselves out there and trusting what they say. It makes sense to us and we are thrilled that they say they can stop this leaking. So please say an extra prayer for Dr. Weyant tonight that he gets plenty of rest and can do the right thing for Ken tomorrow. And say prayers for us too. Thanks for everything. Bev and Ken