Doc's Trek

As some of you may know the Lu family does love the horse races.  Today was the Kentucky Derby and the conditions were not favorable, but the winner was  Justify. What was more amazing, it broke a 186 year record for not running  a 2-year-old  and his jockey Mike Smith was 52 years old. We have been are running the race against Mr. C and we pray that Daryl will go to the Winners Circle!

Normally, my work travel  has only kept me away for a max of two nights. I feel very thankful to my team and many others that have  been extremely flexible to help facilitate this.   This past week I had to travel and be away for 4 consecutive nights.  Marsha was our angel who stepped in to care for Daryl. She is an old girlfriend of Daryl’s and a previous critical care nurse. She stepped right in did not miss a beat to Daryl’s care. She sent me frequent updates and pictures of Daryl. It was a blessing to know that he was well cared for and I think he may have enjoyed the nursing change of shift! We have been blessed by so many friends that have stepped up to help us out.

We know several people are planning trips to see Daryl and we are looking forward to seeing everyone. He is feeling better this week and has even been walking outside to increase his strength and sitting outside for some Vitamin D! Notice the coordinating Dodger attire!

Thank you to everyone and have a very blessed week!

Daryl and Charlottr

 

 

 

This past weekend Tony, Daryl’s  fraternity “big brother” came down from Eugene, OR for a visit. They  did some reminiscing of  PSK stories. . . first time I heard them . . .  and watch a few baseball games with bantering of the Dodgers and Padres rivalry.  Daryl could not stop smiling and he could not write his “comments” back to Tony  quick enough.  We are blessed by the PSK brotherhood!

This week was chemo #3 which means we are half way done! The picture above is at the Infusion Center for his ~7 hour treatment. Now that he is not the new guy, he can pick any chair, which he choose one up front to look outside!  I had to leave after a few hours and a big Thank you to Dan Lawton who was Daryl’s Uber ride home!

Being the  third Chemo, but only are second outpatient, we are still navigating the chemo effects. We are  thankful that our insurance provides 3 days of hydration at the home from the home health. Also they have approved for his Nupegen shot at home. Nupegen  helps to stimulate his WBC ( these help to fight off infection, and chemo generally lowers them) a little device to Daryl’s stomach and 27 hours after chemo it automatically give him the shot over an hour. Pretty high-tech! Maybe a picture next time

The Wed- Friday after chemo are brutal days for Daryl. Basically the chemo is basically in a full on war with the cancer in his body. He experiences several side effects and it completely wipes him out. But on the positive side, today is Saturday and he is feeling better. He had an appetite for some scrambled eggs and a chicken pot pie. Even eating 2-3 bites is great! Daryl’s strength is also zapped, but he asked for a shower today and that always has to feel good! I was pleasantly surprise  when he wanted to walk around,  a little inside the house, to get gain some strength. Then he point to the door and we went and sat outside for a while!

Chemo is **** but if it beats the battle with Mr C  we are all in!  Daryl truly amazes me everyday with his strength and determination. It would be 120% acceptable for him to stay in bed, but everyday he gets up! He is my inspiration everyday!

Thank you for the continued love and prayers from everyone! Love Daryl and Charlotte

 

Definition of Clogging:  to  hinder or obstruct with thick or sticky matter; choke up

That is the word of the week at Casa de Lu. We had some clogging of the facilities for a few days, that required a visit from the plumber. After some work, clog number one was resolved!

Next up was the feeding tube. The lumen for his feeding is very small and we need to frequent flush with water to keep this patent. We have had some resistance in the past but we were always able to clear it. Well this Sunday. . . . . no luck.  I tried all the tricks and helpful tips from online – warm fluid, small amount of liquid, small syringe,  even using coke, but it would not budge!  The concern is two-fold 1- no tubing feeding = no nutrition, 2- if we can’t unclog the tube, we will need to go to the hospital to get a new tube placed.

Next thought was to use the feeding pump, fill the bag with warn water to help push fluids to clear the clog , in addition to all the other  measures we were  still trying. After about 8 hours of trying we finally were able to clear the tube, by the grace of God!  We definitely were do the “clogg free “dance!

I had to travel this  past week, so Scott, a college friend of Daryl’s came to stay at the house. It is a great sense of relief for me to have someone stay with Daryl while I am gone. I also think Daryl may enjoy the change in company. Another fraternity brother Greg Sampson, stopped by while in town. What a great brotherhood of support!

Daryl continues to have  PT and OT visit and they are helping to get him stronger. Even though he is tired it is still important to keep his strength up!

We thank you for all the prayers and support!

Love Daryl and Charlotte

 

Monday: Lab work drawn and appointment with Dr. Kossman. Daryl’s weigh is  up to 131 lbs! Dr. Kossman said he looks good and ready for chemo and commented on Daryl’s new hairdo which is very much like his own. Dr. Kossman sports the fresh shaved head look.

Tuesday: Second  round of at the  Outpatient Infusion Center at Sharp.  We  packed his backpack the night before, like going to the first day of school: iPad, headphones, blanket, dry erase board and marker, extra cartons of tube feedings, syringe for flushing j tube, insulin, glucometer, check, check and check. His tube feeding and pump also have their own backpack! Ready Set Go!  We arrive at 8:00am and left around 3:00pm.The nurses and staff are very friendly and told us about the process and each of the drug for his “cocktail”. They also arranged his scheduled for the remainder of the treatments, follow-ups after chemo and Dr. visits. We are all confirmed every 21 days till the end of June. Above Daryl is enjoying his favorite treat the Italian ice which results in his red teeth!

Wednesday. We had a follow-up on back at the infusion Center for a Nupagen shot that helps to boost his WBC. Hopefully insurance will cover a new device, so he will not have to go back each time for the shot. Thankfully insurance did approve for home health to come and give Daryl his replenish IV fluid at home verse going back to the Infusion Center. Wed, Thurs and Friday, the home health nurse will come  and gave Daryl a antinausea medication and 2 liters of fluid.  Hydration is key after the chemo!

Thursday: Follow-up with Dr. Sandler our endocrinologist, because Daryl’s calcium was begin to climb. Dr. Holdy, his endocrinologist in the hospital, actually call me at home on Tuesday to let me know his concern and to stop his calcium. When is the last time a Dr. called you at home? Daryl has touched so many people, the concern for him is amazing! We also had a visit from Stella, the social worker. She was there to see if we needed any help. She was very impressed with al the support we have from family and friends. She remarked how rare it is to see someone have such support! We are truly blessed! Hydration #2

Friday: Daryl has been very fatigued this week and Friday was not a good day. We were supposed to have a follow up with Dr. Mansfield’s and have PT come, but this was too much. I rescheduled because the #1 thing he needed was to rest! Everyday this week we had appointments and this required the navigation of the 26 steps  up to our house.  Plus the effects of the chemo. Hydration #3.

He is resting more comfortably and each day is getting stronger. This is our calendar for April – Green is Daryl appts, Blue is my work travel and Red is friends visiting or staying while I am away. Is okay to be tired and only the first week of April?

Thank you for all the prayers and support! Love Daryl and Charlotte

Daryl is HOME! He was discharged  late on Wednesday and we have been busy getting everything arranged for his home care.  Daryl has had a feeding tube for a while now, but previously he has done all his feeding via gravity. (as seen in previous photos). Now that he has a G-J tube, the feedings go in the J portion (jejunum) it needs to be control by a pump.  So we welcome Joey the kangaroo pump to Casa de Lu!  It is very small and compact and even comes with its own back pack!

We have an  IV pole for Joey, that is great for when he is sitting on the couch. When Daryl went to bed on Wednesday, we realized the IV pole would not work. The base of the IV pole has a larger girth than my waist. ( makes me feel thin). Also the bag has to be 6 inches above the base of Joey. Please enter Charlotte MacGyver.  We placed Joey on the dresser and I built an “IV pole” with a small photo album base, a three-tier plate stand a ponytail holder and a binder clip! I knew that plate stand would come in handy! I did go on a mission to Target and found the new IV stand. Any guess what it is?

We are getting our normal routine down with meds and dressing changes. We had a visit from the new home health nurse, which Daryl had frequent eye rolling with all the questions.  Daryl is still  pretty weak, so he needs assistance with walking and getting around the house. We are hopeful  he will get stronger ever day and PT is scheduled to come to the house next week.

We feel very blessed to have Daryl home! We wish everyone a  blessed Easter to you and your family! Love Daryl and Charlotte

This past week has been a great one for Daryl!  His blood work is beginning to settle down to an acceptable range.  He is off most of the IV replacements for his calcium, magnesium, potassium and has finished his two antibiotics! We are still monitoring his blood sugars and taking insulin, but that is normal.  We did have a little surprise on Thursday when the balloon from his g-tube decided to “pop out”  and a quick trip to Radiology  popped it back in! One benefit of being in the hospital is the express lane treatment.

He has been tolerating his tube feedings to his J-tube and they clamped his G- tube and he has had no issues!  We were able to talk the Dr’s into letting him have popsicles, Italian ice and water for the first time in two weeks!

The cherry, orange and purple are not colors of a sports team or a flag, they are the colors of Daryl’s favorite Popsicle! With this recent development, Daryl has been enjoying playing a trick on new people who enter his room. He has a suction machine and the tubing is predominately red. When people enter his room their expression is “Oh my goodness” and a little panic. Then Daryl enlightens them and shows the red popsicle! Their expressions quickly turns into a big smile and often a chuckle! Each time I visit,  I never know what color his teeth might be, when he gives that classic Lu smile . . . red, orange or purple!

On Friday Dr. Kossman was amazed by how his swelling in his neck has dramatically gone done!  He joked ” I gave you the good drugs!” It has been a miracle with the decreased  swelling, which means hopefully  the tumors are shrinking, with the first Chemo treatment. We are cautiously optimistic, but feel good that things are moving in the right direction! Even one of the nurses who gave him the chemo was amazed at Daryls progress! A-mazing, Amazing, Amazing!

Tonight we took a stroll around the unit and the nurses were all smiles to see Daryl out walking! The picture above is when we returned and he is having his favorite treat . . . . .  the popsicle!

We thank each of you for the continued support and prayers. We feel those prayers are being answered with all of Daryls progress this past  week! Also a special Thank you to Fr. Alex for stopping by to see Daryl! His visits give Daryl great strength! This week we are hoping he will be discharged from the hospital and be home for Easter!

Love Daryl “popsicle ” and Charlotte

Daryl had his first Chemo treatment on Monday. The Dr., nurses and myself determined it was best to keep him in the hospital for this treatment. His first “chemo cocktails” started around 5:00pm and ended around 11:00pm. They gave Daryl several medications prior to the chemo to help with his nausea, potential reaction and to stabilize his electrolytes.

Tuesday, Daryl was feeling better and his swelling had begun to decrease around his face. He had a visit from our friend Dan who is a transplanted Minnesotan, who went back for the Super Bowl. Daryl was one of the prized few to receive the official Super Bowl hat!  Dan is also a Chemo pharmacist and he confirmed the “cocktail’ was a good but strong one! It was very helpful for Dan’s expertise!

As the week progressed Daryl began to feel the effects of the chemo. His bloodwork continues to have challenges especially with his calcium and magnesium.  Chemo is a good bad drug. Good it goes after the cancer and kills it, Bad  it also goes after the good cells too.

Daryl energy is low, and understandable from the body attack of the chemo. He also had a fever so they have him on a couple of antibiotics.  We are also working to get his pain under control.  The good news is he is tolerating his tube feedings so he is getting nutrition and has a occasional popsicle or Italian ice! His suction tubing is red, which at first startles the doctor and nurses, till we explain that he has red popsicle!  Just a little hospital humor!

We are very blessed to have some of the best nurses caring for Daryl! Chemo is a new territory for us and their knowledge and guidance has been amazing!  We especially thank Alex, Lauren and Heidi who were a wonderful during his first chemo round. They embody the nursing profession by making the patient first! They have also allowed me to take breaks and know Daryl is very well cared for!

The plan is to keep Daryl in the hospital for a few more days. Barb, the Discharge Planner, has already been working with our insurance to obtain all the supplies needed for when he comes home. She has been great, with supplies already arrived at Casa de Lu!

Daryl needs some extra boost this week to get his energy up! My goals are to have him sit in the chair twice a day and go for a short walk! He needs his energy up to be able to come home and tackle the steps of Casa de Lu!

Thank you again for all your support and prayers! Especially all of you who are asking how I am doing!  I greatly appreciate the sincerity. I am not shy and will be asking for support when needed! It means the world to us! I have read Daryl the cards, response, texts  that  have sent and we have cards all around. We are the One Day at a time Lu’s, following the path God has for us.

With Love- Daryl and Charlotte

In the picture above, it is hard to tell but Daryl was representing the Cowboys.

It has been a week  of twist and turns.  I could not determine if we were playing the game of Twister or Monopoly! Vern Lu demonstrating Twister in the  above picture. Monday (3/5) we met with the oncologist Dr. Kossman, to find out the plan. Daryl had a head CT  and it was determined that the cancer is growing quite rapidly and he has three tumors. Two that we can see and  one in his esophagus area. As a result of this rapid growth of Mr. C, the new plan of action is chemotherapy.  Dr. Kossman believes since the cancer is growing fast, chemo is very aggressive with quick-growing cancers. He would like to start sooner than later, more than likely on Monday (today). We needed two things  in the Twister world  to happen 1.  Left foot on green insurance approval (always fun)  2. right hand  on red a port put in. A port is what they put in just beneath the clavicle into a larger vein. This allows direct access for the chemo to quickly get to the blood stream. Also due to the toxic nature of the chemo, it is best not to give thru a regular IV. This was scheduled for Wednesday morning (3/7) followed by a new feeding tube placement. Hey both in the same day! Winner !

Spin the wheel or roll the dice Wednesday:

While getting ready to go to the hospital Daryl fainted and fell three times.  For those of you who have been to Casa de Lu, you are aware of the 26 steps to our house.  The joint decision was made to call an ambulance. The fire department arrive quickly, assess Daryl and then the ambulance arrived. Daryl was conscience, but still unsteady. A tip when you arrive by ambulance at the ER you get to pass GO ( the waiting room) and get to be seen quickly! It was determined Daryl had some very abnormal lab work. His calcium (normally around 6 to 8 ) was 14, his potassium (normally 3.5 or 4.0) was 2.7. . . . so let the replacements begin! I will not go into detail but for those medical folks potassium IV at 100cc/hr equals burning equals new IV. Only took three suggestions of run with another fluid or can you say add Lidocaine!   This also got Daryl admitted, passing GO again but not collecting $200 dollars

After moving to one unit and they realize his level care was more intense than they thought and was  finally  transferred to the Oncology Unit. So after an ambulance call, ER stay, admit to 4East then transfer to 1West it was time for me to call  it a day after my 15 hours! I could  go home knowing Daryl was in good hands and getting some rest!

The next few days they have been working on getting his labs back in alignment, hydration and pain control.  Thursday they did put the port in, new feeding tube and MRI. We were very thankful to have all of these done! Friday they began his tube feeding and he is doing well and no leakage! His surrounding skin is already looking better already.

Today they determined his labs were stable enough to start chemo. He is completing his first round of chemo cocktails tonight. (three different drugs, hence cocktail) We will see tomorrow how he feels. The next few days are going to be touch and go to ensure he keeps hydrated from the effects of the chemo. The chemo will be given every three weeks, to allow his body to recover between treatments.   Hopefully the next treatment will be outpatient and he will be back home soon.

I think we are really playing the “Game of Life Cancer Version”. It has been a rough few days for the Lu’s.   We need your prayers this week for strength in the new path God has chosen for us!

Love always Daryl and Charlotte

 

If you have been to a Casa de Lu party or the Schroeder/Lu Christmas party, there is a consist protein which you have partaking in, the Virginia Ham. ( thank you Ina Garten)  Some have speculated (they will remain nameless) that Daryl has made some changes to Ina’s recipe.  This is unequivocally  not true! Nonetheless  he has been  known as “The Ham Man” . We a recently became aware of a newly  created  a Lincoln Fan Club!  We greatly appreciate all  of support and the Spock socks!

This week we were blessed to have  visits  from fraternity brothers Doug Yount and  Marty Olsen. Doug and Nicole had sent a beautiful sterling fortune  cookie with the special  fraternity brothers fortune and a picture o the Star Trek crew! Marty is a Chiropractor that stopped by to give Daryl some much-needed relief of his back and shoulders.  All the brothers have been amazing!

We have had several meeting with the doctors this week to determine the next steps for Daryl . . . .more to come.  Great news is we met with Dr Barone and  Daryl will be getting a new feeding tube tomorrow.  Hip Hip Hoorah! 

We will update more this week

Love to all! Daryl  (Ham Man Lu) and Charlotte

 

Sometimes in life you think you are on the right path and an event changes to  a completely different  path. When you venture down the new path, often you realize this was a better path.  From the last blog, are next steps were to follow-up with Dr. Mansfield and Dr. Barone for a surgery date.

We met with Dr. Mansfield and our path has changed. The biopsy from the previous week came back positive for cancer. We both were speechless and felt like we had been hit by a ton of bricks. Can we just have some good news for once?   Dr. Mansfield, being the ultimate quarterback of our team, had already followed up with Dr. Kossmans and Dr. Barone.   Based on their consensus, this mean surgery is not the best option, a this time. Due to the cancer spread, too put him thru the very extensive surgery is not the best course of treatment.

Good news we have another option of  immunotherapy. Daryl’s body does not see his cancer as “bad” so it is has been able to grow and reproduce. A simple analogy, you cut your hand it gets infected, your body starts  to rebel with pain, redness and swelling because your body know those are foreign invaders (bacteria that do not belong). The goal with  Immunotherapy is to reteach his body that the cancer cells are bad and to destroy them. We do not know the specifics of how all this works, time frame, method etc.   This is still in the “experimental” stage due to the rigors of the FDA.   We are again blessed to have Dr. Kossman who recently spoke at the International Head and Neck Conference on Immunotherapy. Additionally at the conference,  Dr. Mansfield was also on a prestige panel of doctors  from Cleveland Clinic, MD Anderson, Sloan Kettering and UCLA to discuss cancers.  We knew we were in good hands but WOW!

The next steps are to test and follow-ups. We are waiting approval for a full body PET scan. We have appointment next week with Dr. Kossman and Dr. Mansfield, for determining the process.

The saga of  leaking feeding tube continues! We saw Dr. Barone and he put  stitch to try to hold it in place. We are thinking lets replace it and get a new model! More to come.

A few shout out big THANK YOU’S this week! I had to attend a National Sales Meeting in Phoenix this past week from Monday-Friday. Due to the recent developments, I did not feel comfortable with Daryl being by himself. I reached out to Dave Wolff great friend from Sacramento.  Dave graciously jumped on a plane with a few days notice to come to San Diego.  The “San Diego posse” of Jeff, Chris and Dan, checked on him daily. The piece of mind it gave me daily, I cannot begin to express in words. We are truly blessed.

We also thank each of you everyday that keep us in your thoughts and prayers. We could not do this without each and everyone of you! We will know more this week and will update everyone.

Daryl sometimes leave post-it notes on the coffee maker.  This was my note today.

Love – Daryl and Charlotte