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