Some news...

Les, Mom, Aunt Judy and I met with Dr. T this afternoon. Les was really uncomfortable in his wheelchair, but did pretty well conversing with him. We are again cutting back on some of the meds, with the hope that his hands become less shaky and words are more easily retrieved. Dr. T also advised giving the chemo a break, allowing Les to gain some of his strength back. We will re-evaluate in 4 weeks to see if chemo is a good plan at that point. Mom cancelled the appointment with Dr. Sexina today, since we already had our questions answered and Les was having trouble getting into a good position in the chair.

For the last several evenings, Les has been more conversational. He ate/drank very well tonight...we're not sure why the sudden change, but we're very happy about it. Sounds like gowning up will continue for the next several weeks. Visitors are always welcome, but it may be a good idea to call mom first at 402-480-2981. Thanks for keeping Les in your thoughts and prayers. We appreciate it!

Everybody loves Wipeout!

Tonight when the kids and I visited Les, he was eating vanilla ice cream...Mom was gone and he was actually eating without being told. Imagine that! He also laughed several times as we watched Wipeout, the show where adults run an obstacle course, fall into the mud and generally make fools of themselves for big money...a good night.

Tomorrow Les will be going to the wound clinic to have a bed sore checked out. Friday will bring Drs. Tarantolo and Sexina. Thanks for checking in!

Not much to say...

Les has become more quiet in the last couple days again. He began having some trouble swallowing on Sunday and more pain in the neck as well. They did put him back on the antibiotic he was on in the hospital; I guess to make sure the infection is completely gone and to make sure it doesn't go to the other parotid gland on the painful side. We are scheduled to see Dr. Tarantolo on Friday.

The days are really long for Mom, completely closed in those 4 walls, all gowned up. Cousin Jodi's laptop has been such a blessing. Mom's days pass more quickly with Text Twist, crossword puzzles and spider solitaire.

Thanks for checking in...we'll share what the doctors advise later in the week.

Not too much new news...

Les continues to be awake quite a lot, but doesn't really care to converse. He did say he was bored yesterday, but we're not quite sure how to cure the boredom. He really has no interest in reading, watching movies, playing cards, or using the laptop. Realistically, we're not sure what he is able to do. His hands have been quite shaky this week, so the laptop and cards might be difficult. He is smiling more and that always warms our hearts.

Dr. Tarantolo will see us next Friday afternoon (unless some pesky infection causes us to see him before that). Les isn't drinking much so we continue to worry about dehydration and another bladder infection. The swelling and redness have virtually disappeared, although it is still painful to the touch. Gowning up is still required. Thanks for all the positive thoughts coming our way!

Taking precautions...

As of this morning, any visitors to Les's room will be asked to "gown-up" to avoid the spread of the staph infection. The gowns, masks and gloves are outside his door.

Getting him off a lot of those meds has made him much more awake, but not much more talkative. His appearance is a little different too, as he is sporting a very stubbly stache and beard. (I said he looks a little like Sean Connery.) His neck and cheek are still pretty painful and shaving just isn't high on his list.

Eating is a bit better, but getting him to drink is really hard. An appointment with Dr. Tarantolo will happen sometime late next week to monitor his condition and see whether more chemo is apart of the plan.

Thanks for keeping up on Les's progress!

Returning home tomorrow

The meds have had their chance to get out of Les's system and he seems better. His eyes are clearer and his voice level and speech have increased, as well. Dr. T is pleased with this progress and he will be coming back to the care center tomorrow. We're still not sure whether chemo is going to happen or not. We appreciate you checking on Les's progress. Thanks!

Not what we thought we were going to get...

When we met with Dr. Tarantolo this morning, he was not ready to recommend stopping treatment altogether. There were several reasons for this. First of all, the MRI of the brain and upper spine area showed there hasn't been any new growth in these areas, so the symptoms Les has been having (unresponsiveness, blank stares, shaky/curled up hands, mumbled/incoherent speech) are not related to the brain cancer.

A few days ago he stopped the Marinol (an appetite stimulant that can make you feel like you are high). After looking at Les's dilantin levels (a drug he's been on to make sure he doesn't have seizures) Dr. T realized they were way too high. This too can make you feel/act like you are drunk. A change to a different med will be made today. The anit-depressant dosage will also be dropped a little. The combination of all these drug related side effects could explain many of Les's recent behaviors. Dr. Tarantolo is hoping by Tuesday everything will be out of his system and Les should be more like himself.

We will look at the issue of continuing treatment next week when we have a clearer picture of what Les is like after being more drug free.

A small wrinkle was added this morning. Looks like after culturing the infection in the parotid gland, it is MRSA...a staph infection. So, a change in the antibiotic was ordered and in the next 36 - 48 hours the swelling, redness and pain should be much better.

Our roller coaster ride continues...thanks for checking.

Late news...

What a frustrating day! Mom was at the hospital at 7:15am to make sure she didn't miss Dr. T doing rounds to get the MRI results. When I got there at 10am, I saw him in the parking lot and thought I'd missed him. Seems as though he didn''t round to our room and wouldn't be back until after office hours...after 5pm. After 5pm really turned out to be 8:30pm. Mom had just arrived at Aunt Judy's when he called.

He said the scan of the brain looks very similar to the one Les had done 4 weeks ago, which is good news. Unfortunately clinically, there is a major difference in him. We are hearing from several doctors that it may be time to stop treatment and move on to more palliative care. (Definition from wikipedia = reducing the severity of disease symptoms, rather than striving to halt, delay, or reverse progression of the disease itself or provide a cure. The goal is to prevent and relieve suffering and to improve quality of life for people facing serious, complex illness.) It all comes down to the quality of life part, I guess.

We'll be meeting with Dr. T again tomorrow morning to discuss this in person. Please pray for us during this devastating decision making process. As always, we appreciate you keeping us in your thoughts.

Part 2 - no news yet

Well, unfortunately, part 2 doesn't have much new news. His hemoglobin numbers continue to be low; the 5pm reading was at 9.9. I guess normal ranges are usually between 12- 15. We did not hear anything about the cultured infections or the MRI results. So, we continue to play the waiting game.

Les did wake up a little late afternoon and ate some grapes, a chocolate chip cookie and some Ensure. He seems clearer than the last few days, so we are happy about that. The cheek has not gone down in size or lost its redness like we had hoped. Thanks for checking...

Thursday - part 1

No results from the MRI yet...they took him down around 10:30am, and said we should get some results later today. He has been talking to doctors, nurses, and my pretty cousins a little more lately, so we are hoping the dropping of some of the meds will make him more like himself.

When mom arrived at the hospital this morning, the nurses shared that his hemoglobin had dropped from 12 to 10 overnight and they found some blood in his stool. A colonoscopy could be done tomorrow to see if the cancer has spread there, but we are thinking it doesn't really matter if it is there (treatment would stay the same) and it would be so hard on his body. A final decision will be made later today, but again, we're not pushing for it.

More info will come when we get the MRI results. Thanks for checking in.

Update on Les

A couple of ENT doctors came to visit Les today regarding the infection in his parotid gland. They swabbed the inside of his cheek and found it full of pus. They are culturing it and I guess there is a possibility it may be a staph infection, but nothing confirmed yet.

Dr. Tarantolo also visited and was completely surprised at how unresponsive (not answering questions/blank stares) Les was. He immediately said we needed to drop the Marinol (the appetite stimulant that can make things unclear) and may adjust the anti-depressant later. There is an MRI scheduled for tomorrow to see if his unresponsiveness is due to meds or more spots on the brain.

We are all very tired and dealing with so many emotions. We appreciate you checking the blog and I'll make sure and report the MRI findings as we know it. Thanks for your continued support.

Admitted to Lakeside

Around 3:30am this morning, the nurses from the Care Center called to say they thought Les was having trouble swallowing and were worried about him getting enough oxygen. The ER took more blood for cultures and are giving him IV fluids and antibiotics. His neck continues to have a lot of pain and he is very quiet. We're not sure how long he'll stay at this point. Thank you for your continued prayers and positive thoughts.

A trip to the ER

Mom called this morning about 9:20 and said the left side of Les's neck was swollen and painful. A call to the Dr. confirmed what we thought...a trip to the ER. We got to Lakeside about 11am and they took some blood and did a CT scan of the neck area to see if it was in the lymph nodes, an abscess or something else. Les didn't or was unable to answer questions, so it was hard to know exactly what he was feeling.

Around 2:30, we received word that he had an infection in his parotid gland (a salivary gland in your cheek), which explains the higher white cell count yesterday. They are treating him with antibiotics and he was back at the Center around 5pm. We hope the swelling and the pain are gone in the next 48 hours. If not, he may need to go back to see if there is more than the infection causing the problem. We'll also need to watch his swallowing to make sure he doesn't aspirate something into the lungs. Chemo has been pushed back another week to make sure the infection is completely gone.

Communicating with him continues to be challenging. Mom has even resulted to the blink once for yes or twice for no...and we think that is working sometimes. ? Who knows. Please pray he remains fever free, the pain and swelling go down, and he is able/willing to share how he's feeling. Thanks.

It's been a while...

Not a lot to report in the last few days, but this week brings lots of doctor appointments.

Today, Les met with Dr. Sexena, his primary physician. She wanted to see him to make sure the bladder infection was cleared up. His blood tests indicated his white cell count is up (not good in this case, as it usually means infection somewhere). The urine looked clean, so we're not sure why the count is up.

Les continues to be very weak. This time last month, he was lifting a 4 lb. weight and doing 20 reps. Today he is only able to do a 1lb. weight 5 times. He seems to be awake more of the time, but is talking less. He often won't respond to questions which makes for long, drawn-out days for Mom. The pain in his neck continues on both sides, but he almost always refuses any pain meds for it.

Dr. Tarantolo sees us on Wednesday before the 4th round of chemo starts. It will run through Friday, and based on what happened last time, Les will have scans done 7-10 days after that.

Thanks for checking...I'll post more in a few days to let you know how the chemo is going and to share what Dr. T has to say.

Says he's better...

When I visited Les this afternoon, he said he was much better (as opposed to well or fine). When we returned after dinner, he ate a bowl full of grapes and drank lots of juice. He actually put on his glasses and watched all of Wheel of Fortune with us (that's right, 30 full minutes with his eyes open!). This hasn't happened for a long time!

Mom said physical therapy was difficult after so many days laying in the bed. The pain in his neck is still very painful...he didn't even want lotion on his head today because it hurt. We're not sure what to do about that. Hopefully tomorrow will be better as well. Thanks for checking!

Lots of meds, not much nutrition

Since Les has been complaining of pain in his neck, they've added a pain med to his daily cocktail. We're thinking that, along with his numerous other meds, may be adding to his sleepiness. He seems fuzzy and at times forgetful, so we are never sure what is reaction to meds vs. cancer. We are again worried about dehydration, since he isn't drinking or eating much. He'll see Dr. Sexena on Monday and start up round 4 of chemo next Wednesday. Continued prayers are always appreciated. Thanks!

Happy 4th!

Tradition calls for us to spend the 4th of July with our good friends, the Whiteheads. There is always a photo which is mounted in Doug's garage. It was taken again today, but we also took a field trip to Les's room for another photo. He was surprised to see all the company and I think very touched. We appreciate everyone's willingness to make him feel apart of the day!

Pre-weekend update

Les continues to sleep a lot, but not nearly as much as he was doing a week ago. He seems clearer in thought and when he speaks so the infection must be getting better. He is experiencing some pain in his neck area, so we're not sure what that is. Eating and drinking continue to be low on his list.

We hope you all have a relaxing and enjoyable holiday weekend. Thanks again for checking in on our family.

Back in the Care Center tonight

Around 5pm, Les left Lakeside and headed back home to the Care Center. The ride was bumpy, but he managed. He was forcefully told by Dr. Sexena that he needs to eat and drink. We'll see. He slept almost all day again.

Dr. T thought it best to push the 4th round of chemo off a week, so it will start up July 15 and end on the 17th. As always, thank you for taking the time to check the blog and Les's status. We appreciate it.