Day one of chemo...

We found out today that the ultrasound on the liver indicated that the cancer had not spread there. The liver function levels were higher than normal, but they couldn't really attribute that to anything from the ultrasound. Dr. T is concerned that the movement of the left foot is so inconsistent. Les has been unable to move it the last couple days again.

He wheeled himself about 50 ft. today and told mom he was done. She encouraged him to rest a while and try again. After resting few minutes, he again told her he was done. She said ok...turn yourself around and we'll go back. He looked at her and said, "Are you helpless now?" Yikes! She waited him out (just like the great teacher she is) and he turned himself around and wheeled back to the room.

Chemo started at 4:15. The first med took and hour and then they changed to a second med, also for an hour. Dr. T. thinks he should tolerate it very well. We hope so. Thanks for checking...

Radiation is over...

Tomorrow Les will have an ultra sound of his liver before chemo starts to get some baseline information. Chemo will be done in his room, so at least he'll be semi-comfortable. He was up and out of bed twice today for about an hour each. He even wheeled himself down the long hallway to the windows (about 275ft)! He wasn't very happy about it, so I'm guessing it wasn't his idea. He didn't eat much for dinner, but enjoyed the cherry cobbler. Mom thinks it's funny that he eats the desserts first. Sounds good to me! Please send up some prayers for an easy reaction to the chemo. Thanks!

Release date set...

We found out today that Les will be getting his last radiation treatment on the mid spine tomorrow. I'm not sure what changed, but chemo will start on Thurs (3hour), and continue Fri (1hour) and Sat (1hour). We don't think the Ashland Care Center will admit on the weekend, so it looks like he'll leave Bergan on Monday, May 4. Carboplatin and Etoposide are the chemo drugs of choice for Les. Side effects will be nausea during the dosage days and then fatigue, low white, red, and platelet counts for several weeks after that. They also said to avoid your favorite foods during that time or you may develop an aversion to them! Guess I'll have to eat his chocolate to save him from himself.:)

PT says he needs to be up and more active. They say for every one day he is in bed, it takes four days to recover. So, his goal is to start getting up and out of the bed 2 times a day for extended periods. He did go outside today for a while, but said it was chilly. I thought so too! (Thanks Aunt Nancy for taking such great notes...you should start a blog!) Take care!

Some answers, some questions

I talked to Mom around 1pm today and she said radiation had gone well. Les had shared with his primary physician that he was having some trouble swallowing. We jumped to the conclusion it was the tumor on the C3, but later found this may not be the case. I guess he has developed some mouth sores, which are a result of all the steroids he is on. He has been prescribed some swish and swallow medicine to take care of these sores. So, hopefully they will clear up and the swallowing issues will go with them.

Dr. Torantollo finally rounded around 7:10pm. He said that the chemo will start the day after the radiation stops. He is checking to see if Les will be released the day of his last radiation treatment (May 4) or if they will continue to keep him for 3 additional days for the chemo and then be released.

When Dr. T. asked Les about how his legs were working, he moved both feet! It was a shock to Aunt Judy and me, who hadn't seen that left foot move for weeks! Mom said she just had seen it earlier today. I guess it's being a little unpredictable, so he can't always do it on command. We were all a little more optimistic, but also wonder what else Les isn't sharing with us. He did say that his neck doesn't hurt as much as it used to, so we are also happy about that.

PT and OT will continue each day. He was up in the chair and wandering around the lobby since it was too cold to go out today. Mom is going to make him wheel himself tomorrow to work his arm muscles. We'll see if he is in the mood for that. Take care and thanks for your prayers...they must be working.:)

A gray day...outside and in

Around us, Les's mood today was much like the weather...somewhat gray and gloomy. I guess he perked up a little for some visitors, so that is good. He watched a little golf on TV, listened to an informational CD, and slept/laid with his eyes closed much of the day. He wasn't really in the mood to eat much when I was there, so hopefully that changes a bit. We didn't get a visit from the doctors today, but mom and I brainstormed a list of questions for Dr. T for when she sees him tomorrow. Hopefully a change in the weather will make everyone happier!

The end of another long week...

Here we are at the end of our 4th week of learning about Les's diagnosis. So much has happened in a short amount of time. My sister, Natalie and her kids, came to visit for a few days which brought lots of smiles from Les. He didn't make it outside on Friday. PT came during lunch and said they'd be back, but they never came, and Les slept/laid with his eyes closed a large portion of the day. Radiation takes less time now that they are only focusing on the mid spine. He seemed talkative while the grandkids visited and asked questions about what was going on in their lives.

I asked him if he wanted me to mention anything specific in the blog, and of course he answered no, nothing much. So I asked him if I should tell everyone to come and visit and stay well over an hour! His one word answer with a smile was, "Buzz."

We are hearing such wonderful stories and comments from old high school and college friends! He gave a big laugh when I mentioned an old friend referring to him as "Bloby". My sister and I had never heard that nickname and glad it was never used on us! Thanks for sharing your support with us.

Time outside again...

Shortly after lunch, Les was able to spend about 25 minutes outside again today. He said he really enjoyed the warm weather. The nurses found a Chili's hat for him to wear to protect him from the sun. He says he has hundreds at home, so we'll just need to bring some up to the hospital.

He slept a lot today. He seems to think he is only getting about 3 - 4 hours of sleep during the night. Aunt Judy brought a boom box and some cds so he can listen to these interesting stories of famous people's lives and historical events. Although maybe listening to them at night isn't such a good idea... Mom said they were so interesting she missed her nap in the chair this afternoon! Dr. T has been out all week, but we'll expect a visit on Monday. Hopefully we'll get the scoop on a dismissal date and the upcoming chemo.

We love reading the comments from all our friends and family. We pray that blessings abound in your lives, as we feel blessed by you. Thanks!

Enjoying the weather...

He did it! He made it outside to enjoy the smell of the tulips in the air (and an idling loading van in the area)! :(
Mom, Dad, and Paul W. spent about 20 minutes outside and it sounds like it was good for him. With all the therapy he's been getting, Les is almost able to move himself from the bed to a chair without much help. When I asked what I could say about his outing today, he said, "It was nice." Yes, that's about as good as it gets.

Tomorrow will be his last radiation treatment on his head/neck. We think there will be 7 more on his mid spine after that. So, he will probably be at Bergan until the first part of May. A doctor asked him how the radiation was going, and today he said, "I think it is going to help. I'm hopeful." He also told the doc he was "pretty healthy". We laughed when he told us his frustration with the oncology social workers always wanting him to share how he is feeling emotionally. (He even imitated their voices!) It was good to see him express some of that emotion in his own way. Thanks for checking in... we appreciate you!

A hair cut like the good old days...

Since Les was losing much of his hair due to the radiation, I brought my clippers up to the hospital today and gave him a Marine style hair cut. I left it 1/4" long...not sure how short the Marines go. ;) He has been spending time sitting in a chair the last couple days and I think they are planning to take him outside tomorrow for some of the 75˚ day. He is very tired of the hospital food, but can't really give us any ideas for what would taste better when we offer to bring him something in. I think he eats just to make mom and the nurses happy. He does enjoy a little Baker's chocolate almost every day, though, so you know those taste buds are still working! The right leg was moving a lot today for PT and OT, so we hope those muscles are coming back and getting strong. Thanks for all the warm wishes. Enjoy the spring weather!

Feels like a Monday...

Les was back to the daily grind today...OT, PT, and radiation. He worked hard during therapy, but I don't think he really likes it. I'm starting to think he doesn't like it when mom asks him to wiggle his toes, either. Could be that the same four walls are getting a little old, and we are sensing some mild irritability. We are hoping to break up his cabin fever with a trip outside later in the week as it warms up.

Mom and Aunt Judy visited Brookstone, Gretna, and Ashland earlier today. I think they've eliminated Gretna from the list. They said Brookstone was beautiful, new, and had great rehab facilities. Ashland is in the process of some renovation and if Les went there, it sounds like he would be in one of the renovated rooms. Both facilities will transport him to chemo. We are hearing that he may stay at the hospital until his radiation treatments are all done, so we have some time to make a plan. No confirmation on a release date yet.

I think I've changed the comment section on this blog so you can post without having an account...try it, we'd love to hear from you! We've printed what we have so far and Les is very touched by all your comments. Thank you.:)

A quiet weekend

After lots of activity on Friday, the weekend was quiet blessing. Les had a few visitors, slept a bit, and kept that right foot moving. He is good at moving the foot, but the leg is much harder. He is somewhat reluctant to do any exercises with us (a nap usually takes precedence), but when OT or PT comes, he plays along a little better. He is beginning to lose his hair. We are finding his pillow full of gray hair several times a day. Good thing he's acquired all those golf caps all these years. :)

He seems anxious to know what the next part of the plan is, but without knowing when he is being released, we are still looking at options. Ashland, Gretna, and the new place out by Elkhorn, Brooksotne, are all under consideration. We'll need to visit and see about transportation, rehab facilities, etc. This will be the last week for radiation on his head/neck. Please pray that these last visits really make an impact. Thanks so much for checking in on him!

A memorable day...

As mentioned earlier, Mom and Dad received all sorts of special surprises today. The nursing staff arranged for mom to get some flowers from Les and he wrote a very nice card, which she treasures. The nurses also gave them a nice plaque that says LOVE, an Anniversary balloon, and a card signed by everyone. Aunt Judy brought up a wonderful steak dinner with all the trimmings. She included a glass of wine for mom, a candle, real linens, and sparkling water for Les. I hope everyone has an "Aunt Judy" in their lives! Cousin Tammy and her husband Monty brought up an anniversary cake, too! All delicious!

Our good times were sobered a little with a visit from a neurologist. He was called in because of the weakness in Les's legs. They did yet another MRI (a simpler one) this afternoon and found there is quite a bit of swelling around the T8 tumor (mid-spine) which could cause the trouble with the right leg. He was able to move the foot pretty well today, and can feel it if you touch his legs/feet. We are happy about that. The neuro surgeon did not recommend surgery, which we knew from the beginning. It would most likely do more damage. Unfortunately, the neurologist doesn't think the left leg will come back. He also said that the tumor on the C3 is the same size as it was from last Saturday's scan. There are only 4 radiation treatments still available for that tumor, and we are unsettled it hasn't reduced in size. So, a memorable day, full of emotions. Thank you for all the cards for Les's health, Mom's birthday, and their anniversary. We appreciate you all.

Friday Update -

Thank you for all the well wishes for Les! The nurses and pastoral staff are taking good care of him and Mom today. They were given a Willow Tree couple for their 44th anniversary from the hospital pastor and the nurses took care of getting some flowers that are to be from Les to Mom for her birthday today. We've heard the nurses are supplying some cake, too! We so appreciate their thoughtfulness.

The MRI had good news for us! There wasn't a tumor on Les's lower spine/lumbar area, but we're not exactly sure why the severe leg weakness/inability to move has spread to the right leg. The right foot is at least moving today, but lifting the leg off the bed to a flexed position is not so good. The left one isn't playing along at all today.

He is very tired after radiation and PT this morning. He could only sit on the bed for 8 minutes today. He is very discouraged, but the plan is to really focus on the upper body and make sure it is strong. Dr. T. will be sending a neurologist by to see about the weakness in the legs.

He is done with 12 days of radiation to the neck/head (4 to go) and will have 7 more to the mid spine area. After all the radiation is done, we think we are moving back to the 3 day chemo plan through the port. This is the one where he has chemo 3 consectutive days and is off for 18. We'll check on that as it gets closer.

We have been told to look into some skilled nursing facilities for acute care/rehab as our next move once he's out of the hospital. We still haven't been told a date for that yet.

Thanks so much for your positive thoughts and prayers for our whole family. God's Blessings to all of you, too!

Lumbar MRI tonight, I think

Not such good news as of 6pm. Mom called and said now Les's right leg is paralyzed. He's scheduled for an MRI tonight, I believe, for the lumbar area. Please pray for no more tumors on the spine. We need some Divine intervention. More as I know it. Nicole

Something to celebrate

Yesterday around 5pm, Les's left leg "jumped". Mom was very excited and wanted to go tell the nurses right away. Les, of course, didn't think telling them was necessary. He did say it hurt when it moved. There were several times throughout the evening when he was able to wiggle his toes or move the foot briefly.

Today is about the same. The toes are still moving and we are encouraged. He was really tired after radiation, so I'm sure a nap is on the agenda for the afternoon.

The picture of Mom and Dad was from Easter Sunday. The one by himself was taken on Wednesday night. Thank you so much for keeping Les in your thoughts and prayers!

About the same today...

I called mom around noon, and she said things are about the same today. The left leg is still not working at all, although PT has him strengthening his upper body a lot too. Yesterday he was able to sit on the edge of the bed for 11 minutes and today he was up to 13 minutes. He tried to stand and only made it about 10 seconds. They keep encouraging him to focus on the things he can do, not on the things he can't. Probably good advice for all of us.

He had his radiation treatments this morning, which make him very fatigued. The nauseousness seems to be gone and he is trying hard to eat at least 50% - 75% of his meals. He says the pain in his neck is about the same and the doctor thought that should be lessening as the treatments progress. We are on day 3 of the 5 day oral chemo.

He seems to be more like his old self, more animated and laughing. The doctors joke about how very few times they've actually heard him say more than a few words. We're not sure if it's that we, the women in his life, just talk too much or that he only says what needs to be said...a man of few words, but wise ones. Take care and thanks for checking on our progress.

Tuesday news

Les has had a busy morning with a few visitors, therapy and radiation. Dr. T came to visit again and shared with mom that the tumor on the spine was not on the original PET scan from 12 days ago. He had his whole team check to be sure. I guess having cancer spread to the spine is very unusual. In all his years of experience, Dr. T has only seen it happen in 6 other cases, so it doesn't sound like there is a whole lot of data available for effective treatment. According to the oncology radiologists, radiating the whole spine as a preventative is not an option. The tumor on the C3 is the more troublesome tumor, even though it is smaller than the one on the T8, as it has the ability to do the most damage overall. Please pray that that one shrinks, especially.

Thankfully, cancer on the spine doesn't hurt like bone cancer does, and we are celebrating that. We know that small cell carcinoma responds well to radiation (we have proof of that in the brain) and we continue to hope and pray it is as effective on the spine. The leg movement is still not good, but we are told after a few days of radiation (and the swelling goes down) movement should come back. Thanks for checking, and peace to all of you.

A new plan...

Well, based on the events over the weekend, we have a revised plan of treatment. Due to the tumor that is on Les's mid-spine, Dr. T advised we start oral chemotherapy. Starting today, he took a pill called Temodar. He will take this for 5 days and then be off for 23 days. This is in conjunction with the radiation on his head/neck and now spine. His left leg did not move today, which was a little bit of a downer after he was able to minimally move it yesterday. He said he did not sleep well, but that is probably due to the increase in the steroid dose. I asked about visitors and he smiled and said something like, "small groups for a small amount of time would be fine". His color is good and seems to be feeling okay aside from the tiredness. We so appreciate your continued checking of the blog and your prayers. Thank you!

Easter is full of good news!

Happy Easter to all of you!

We met with an oncologist and the radiation oncologist this morning and they shared that the reason for Les's left leg paralysis is a tumor located on his mid spine.I guess it is actually bigger than the one on the C3 spine. We will begin radiation on this spot this morning, and he will continue the head/neck and now back radiation again tomorrow. This tumor could have actually been there all along and either didn't show up on the PET scan due to the location, or it may have grown since then. With radiation and physical therapy, he should regain use of the leg. Please pray it is so.

Finally...some news we wanted to hear. The MRI of the brain showed that the radiation is working and the tumors in the brain are shrinking! Thanks be to God! We are pleased to finally get some kind of good news.

He will most likely stay at Bergan for the next couple days. We are here because they have radiation right on site, instead of traveling from Lakeside to Midwest Cancer Center each day. He is in Room 523. Not sure if he is up for visitors at this point.

We are thankful for the doctors, nurses, family and friends that are helping us cope with each day's news. We would be lost without you.

Update...

It is almost 6pm and Les is being sent up to the 5th floor to be admitted. They did an MRI of his head, neck and spine to the waist. A doctor will not be getting back to us with results until tomorrow at 9am. He says he is not in any pain, and if he is telling the truth, we are thankful for that. Things do not look good and we are accepting that. Hope is always there, especially on Easter morning. Thank you again for all the support. We cannot say that enough. God Bless all of you.

Prayers please...

It is now almost 4pm and we are at the Bergan ER. After a really good night yesterday evening, Les woke up this morning with extremely weak muscles. He was unable to walk with the walker or even to get himself up out of the bed. A home health nurse came for a scheduled visit and relayed Les's condition to the on call dr. They recommended that he be taken to the ER to check the tumor on the spine. He is currently having an MRI to see if that tumor has increased. We are hoping it is something as simple of being over medicated with too many nausea/sleeping pills. Please keep us in your thoughts and prayers. More later... nik

Our game plan

After Les's 7th radiation treatment today, we met with Dr. Tarantolo, the oncologist. He recommends that we stick with the original plan to radiate the head/neck for 16 treatments and then move on to chemo. The pesky part of Les's diagnosis is the tumor on his spine. There is real concern that if that one does not shrink, paralysis and the inability swallow could follow. The tumor in his lung does not seem to be causing any problems at this time (no trouble breathing, a cough, shortness of breath, etc), so we are putting it on the back burner until radation is over. Radiation will be over on the 23rd of April, although we will not be able to scan to see what progress has been made for another 6 weeks...the first week in June or so.

Chemo will be a three day on, 18 day off schedule and he will go through 2 cycles of that before a scan is done to see progress...which will probably be June as well.

Today, Les seemed more alert and less nauseous, although that is not completely gone. Dr. T gave us a new anti-nausea med to try and hopefully that will make a difference...it definitely won't make him as tired as the first one we tried. We are hoping to get all the home health people worked out and on a schedule, as that has been somewhat difficult up until this point. Some interference from Dr. T to the supervisor has surely helped, as there was a message on the machine when we got home. An appetite stimulant was also given, so we are encouraged he'll begin eating again.

Thank you so much for the cards, visits, food, magazines, phone calls, etc. We are overwhelmed with the amount of support our friends, family, and community have shown us. Please continue to pray for the cancerous tumors to shrink and not spread, and that Les may regain the life he is used to.

Thursday...

Not much has changed today. Les went for radiation at 1:30. He continues to be very nauseous, but we later got some meds to help with that. He is sleeping a lot and very unwilling to eat or do his exercises. He doesn't mind my mom at all. We will meet with Dr. T tomorrow after radiation to discuss the chemo treatments...when, how much, etc.

Please keep praying for strength and a feeling of wellness. We are hoping this is the bottom and we can only go up from here.

Going Home

A change in plans...I guess the chemo won't start until next week. Les had his 5th radiation treatment this morning and around noon had the port put in. He is extremely tired, but not having much pain. He was quite nauseous (sp?) this morning. He has no appetite, but did eat some peanut butter toast and fruit around 3pm. He will need to be on a high calorie/high protein diet for the immediate future...there goes the heart healthy diet mom's had him on for years. He secretly smiled at the news.

We're off to Judy's in a while. They are still getting all his meds figured out. We are somewhat concerned with how weak he is. Radiation will happen Thursday and Friday at 2pm. Dr. Tarantolo will meet with us after Friday's appt. to discuss chemo. Please continue to pray for strength and that he tolerates the radiation/chemo as it begins next week.

The Latest...

Mom called at 2pm and said Les was having his 4th day of radiation. Our oncologist, Dr. Tarantolo, visited earlier and confirmed we are dealing with small cell carcinoma. Les will go for his 5th day of radiation tomorrow at 10:15 and then have a port inserted at 1pm. This port will be used to deliver the chemo. Chemo will most likely start on Wednesday. The suggested treatment will be 3 consecutive days of chemo (as well as the radiation to the head/neck) and then 21 days off of chemo. Sounds like Day 1 will be a 3 hour treatment, Day 2 an hour, and Day 3 an hour. After two series of this, a scan will be taken to see how the cancer responded. A change in the type of chemo may be needed at that time if progress is not seen.

We believe he will be dismissed from the hospital Wednesday after the placing of the port. Aunt Judy has graciously invited them to her home in Omaha for a few days. Nat and her family are coming for the Easter weekend and I'm sure watching the grandkids race for eggs filled with candy and spare change will brighten his spirits.

Continued prayers are appreciated. We are ready for some good news.

Playing the waiting game

Today (Monday) Les had his 3rd radiation treatment. They are tolerable, but make him tired. I guess he took a lap around the hospital floor, and walking is better. The oncologist believes we are dealing with small cell carcinoma, but still waiting for more results. If it is small cell carcinoma (a more rapidly spreading cancer), chemo may start as soon as Wednesday. He will be getting a port possibly tomorrow for this purpose. If chemo begins, the levels of radiation will need to be decreased and stretched over a longer period. We are thinking he may go to Aunt Judy's for the immediate future...we'd like to see him a little more steady on his feet. Still not sure when they'll let him go...maybe Tuesday or Wednesday.

He is truly touched by all the wonderful cards and visits from so many people. Thank you so much for caring and please continue to pray for good health and spirits.

Getting Started...

Thank you so much for all the positive thoughts and prayers sent our way. We are so thankful to have so many people caring about our family.

Here is a little back story and update for you if you're interested. My father, Les, is a very active 65 year old. He loves playing golf, traveling and playing bridge. He has a colorful health history with 2 stints in his heart, 2 bouts of bladder cancer, several skin cancer spots removed, almost 50 years of smoking, etc.

About six weeks ago, he started complaining of pain in his neck on the right side. After several days of severe pain, he self diagnosed himself with shingles. He got little sympathy from my mother, who has had them in the past and didn't believe he really had them. About 3 weeks ago after getting back from Palm Springs, my mom shared her concerns that he was sleeping all the time, was very off balance during their rounds of golf, and was having some forgetful moments. She encouraged him into seeing his cardiologist, and he was going for a stress test on the 30th. He did see a GP, but told the dr. he had shingles, and the doctor believed him. No other testing was done.

Last weekend, he began throwing up. The pain in his head/neck never stopped, and he really couldn't walk without hanging on to something. He was adamant about not seeing another dr. until his stress test to rule out his heart. Finally my mom took him to the er on Sunday. They did a CAT scan and diagnosed him with having mini strokes. After being admitted, they did several tests and found his heart/structure was good. The corotid arteries were also okay. The MRI/MRA later revealed that they weren't really strokes, but metastasized tumors. The next morning we found out it wasn't just 3 tumors but multiple. (I counted 12ish). A CAT scan later showed that the primary source is from his lung. (His mother also had lung cancer, although she never smoked.) The tumor there is 4.6 cm x 2.8cm. :( I guess a 1cm spot takes about 200 days to develop, but then doubles in size in that same amount of time. It could have gone undiagnosed for a long time since it wasn't blocking an airway. The spreading was the only indication.

A PET scan revealed another tumor on his spine (the neck pain), in his adrenal gland, a node on his liver and one behind his breast bone.

Radiation of the head/neck will be our main priority. They need to get those under control first. He has completed 2 of the 16 treatments. Then, chemo alone or chemo and radiation will be done on the lung and other areas.

His spirits are okay...he is most concerned with not finding the right words or answers to questions. We are not sure if that will come back yet or not. We are a very faithful family and know everything is ultimately in God's hands. We would appreciate all prayers for an outcome that would allow him to enjoy his life the way he used to. We don't really need anything other than that.

P.S. Please always use sunscreen and don't tan, as melanoma is the 2nd most likely way to have cancer spread to the brain. Get all spots/moles checked NOW. Stop smoking and encourage those around you to stop. Lung cancer is the #1 cause of spreading to the brain.