Monday, December 10, 2007

Recent News




***
09/07/2010 Hello! We have received lots of requests to update the blog. Didn't even realize it had been so long. Yes, Lyle is still in remission. He had a check up in 07/2010. He is still cancer free. They have stopped scanning his brain. The risks of the radiation outweigh the benefits. He did have another blood clot develop. This one was was in a vessel between his liver and intestines. Thank goodness the scan found it. He is back on blood thinner. This is a minor problem. (Who ever thought that a blood clot would be minor?!!??) We just thank God everyday that he is well and is still able to receive treatment at the Cancer Center in Tucson. We can never say enough good things about that facility.
***
The children are back in school. Meghan is a senior in high school . Jake and Halle are freshman this year. Emily is the only one at the junior high. Ben is a first grader. It is hard to believe that soon Meghan will be in college. Hanna is starting to feel a little old. :)
***
Meghan is working at a local vet clinic and is squad leader for the clarinets in the marching band. Jacob is running cross country at the high school. Halle is swimming at the high school. Emily is running cross country at the junior high. Little Ben just finished up swim lessons.
***
We have new photo's posted in the Minkler Family Photo's. Look to the right. Enjoy!
09/27/2009 Everyone is back in school (for a month and a half now)! Ben has started kindergarten. He likes his teacher and has made lots of friends. He is having one small problem. He likes to talk and play so he keeps getting in trouble. :) Jake and Emily are running cross country. Jacob has been placing between 18th and 25th in a race with an average of 70-80 kids. Emily is also ding very well. She has been sick the last few weeks off and on. It makes it really hard to race when you have a stuffy nose! Halle is doing very well in school. She is still a teachers assistant for her favorite teacher. Meghan has been learning to drive her jeep. It is a stick shift. Lyle has been giving the driving lessons. (Hanna gasps to much and it makes Meghan nervous.)
***
Lyle is still in remission. He is having some minor outpatient surgery on his back to remove a new leision that has appeared on his back. They will remove the problem area on Columbous Day. Hanna's friend, Lisa, is still doing well. Please pray for Mary and Clint as he continues his battle with cancer. Clint recently was admitted to the hospital for breathing difficulty.
***
Thanks to everyone that continues to ask about Lyle's health. We don't update the blog as much as we should these days. Don't give up on us. Hanna hopes to update the blog with some photos of the children soon.
06/11/2009 Check out Meghan's photo of her first day of work at her very first job. Scroll down......Stole it from my brother's web site. She is staying with his family this summer. She has a part time job at a move theater.
06/05/2009 Lyle is now officially 10 months into remission. His CT and MRI brain scan still show no evidence of cancer. His next check up is in four months. They again will do CT/MRI. They are following him pretty close due to the success of this experimental treatment. The Lord has blessed us yet again. Pray this treatment will be successful in other individuals fighting melanoma. See below for information regarding the type of chemotherapy that he underwent.
***
Lyle is still holding down the house while Hanna is in training. He is doing a GREAT job!!! The kids are out of school now and enjoying summer break. Meghan has gone to stay the summer with her Uncle and Aunt and work in her Aunt's day care.
***
Hanna will return from training 06/19/2009 for one week. Then it is back off to Phoenix for another month. She is doing well in class but misses the kids and Lyle. She can't wait to go home!
05/06/2009 So much has happened! Lyle is still doing well. He had a bout with pneumonia in April, but has recovered. He will always be prone to pneumonia. When we hear the familiar "rattle" in his lungs in the future, off to the doctor he will go. He is still in remission and his next appointment is 06/04/2009. (Also our anniversary!)
***
Meghan went to prom. Pictures haven't been posted yet. :( (There are a few new photo's from our snow storm in December though. Scroll down!) She had a great time and looked so beautiful. Just can't believe that she is 16. Ben waited at the front door for her date with his sombrero and toy machine gun. Quite a cute picture. She will be spending the summer at Uncle Peter's house working in his wife's day care. This is a great opportunity for her and we are quite grateful. The trip will give her some work experience and money to put toward her car. She is still working on paying off her trip to England with the band. She now has tickets to a country concert that will be held in June for sale. Tickets
***
Hanna has been promoted at work. She is now a Claims Representative. Training will be held in Phoenix. She left yesterday and will be gone until July 21. There will be a one week break in late June where she will return to Prescott for on the job training. Lyle and the kids will go down to see her this weekend for mother's day. Hanna is confident that Lyle will handle things like a pro. She left him a detailed calendar with all the children's activities and appointments.
***
Hanna's mom had some out patient surgery last month. A swollen lymph node was removed for testing. Results from some of the testing have been returned. Node does not appear to have cancer but they are still awaiting further test results.
***
Thanks to everybody who continues to to view our blog and inquire about Lyle's health. Your support is heartfelt and we are so grateful and blessed.
***
Please pray for the wife of the man that had melanoma in his brain and lungs. He has passed away.
03/10/2000 Lyle's brain MRI and CT scan are clean. He is still cancer free. We are so blessed. He does not have to return for scans until 06/04/2009. Normally the next level of scans would be chest x-rays. We would be done with CT's and MRI's. In his case, they are going to follow him a little more closely. We are not sure if that is because he is just a nice guy or they are going to write something up on this kind of treatment for publication. There appears to be at lest two other cases that have been treated at the Cancer Center using the same protocol with successful outcomes. He is also is scheduled to have his back "mapped". They are going to take photographs of his back so they can watch the progression of any moles or spots he has back there. That will be a huge asset to catching any further development of skin cancers before they get out of control in the future.
***
Lyle turned 50 this past week. The kids had the great idea to fill the cake with 50 flaming candles. By the time we got the last candle lit, the first one was just about burnt down to the nub. Lyle blew them all out and the smoke filled the dining room! The kids were thrilled! Hanna will post pictures later when she gets home. We found out that with Lyle's brand spanking new AARP card we can save $12 per night at the hotel on vacation this summer. :)
***
Thanks to Nana for watching the kids this go round!
***
01/14/2009 Happy new year! Lyle had another check up at the Cancer Center in Tucson last week. His brain and body are still clear of any detectable melanoma. Four months into remission now. He will be checked again in two months.
12/03/2008 Lyle is still in remission. He was seen at the Cancer Center in Tucson in early November. His brain and body was scanned for melanoma. There was none detectable at this time. YEA!!! His next check up is scheduled for early January. Thank you for your continued prayers.
***
We have another couple to add to your prayer list. We were contacted by a man and his wife last night. He has previously had melanoma in his brain. It has spread to his lungs. Please pray for wisdom, peace and healgin as they continue their fight.
***
Our friend Lisa continues in good health. She recently had a "surprise" birthday party thrown by her husband. It was a very sweet time. She is a remarkable woman.
***
Clint also continues his fight against cancer. Please continue to pray for him and his wife Mary. He has had some recent issues with the cancer but his spirits are good.
***
Can you believe that the school year is almost half way over? My goodness, Ben's fifth birthday and Meghan's 16th birthday are approaching rapidly. Hard to believe that Meghan will be legal to drive. Her main challenge on the driving front is the lack of a vehicle. She is searching for work at this time. (We told her we would match any funds she saves for her car. ) She is also saving for a trip to England with the High School Marching Band. They are going to march 01/01/2010 before the Queen. Anybody that hasn't already taken advantage of the AZ Tax Credit by donating to their local school can donate to offset the cost of the band trip. See http://www.prescottschools.com/az_tax_credit.htm You must specify that the funds go to the general BandTravel (England) fund or my may specify the child you are donating too. This is a great way to reduce your AZ Tax debt and support your local schools! If you need more info call Hanna's cell phone 928-713-5386.
***
Meghan, Jake, Halle and Emily will be in the Christmas Parade this weekend. Jake and Halle will be playing with the Jr. High band. Meghan will be playing with the High School band and Emily will be marching with her Gradeschool dressed as a gift! Come out and see the fun. I believe the parade begins at 1pm in downtown Prescott.
***
Hope everybody had a great Thanksgiving. Lyle grilled a turkey and Meghan tried her hand at making the rest of dinner. She makes a GREAT chocolate cake!
09/29/2008
There is a
TOP SECRET
surprise party for
Lyle Minkler.

Come help us celebrate his complete
remission from cancer
and let us say
“Thanks!”
for everything you’ve done.

WHERE: Call for address
WHEN: Sunday 10/19/2008
TIME: Lyle arrives at 2 pm so if you want to hide, come earlier.

RSVP to Hanna at
928-713-5386 or email her at
minkler07@netzero.com
This is a surprise party. (Don't tell Lyle about it!!!!) Hanna is going to tell Lyle that she has invited people for a Sunday School meeting. This is an open invitation guys. We can't get paper invitations out to everybody, though we are going to try! If you know Lyle, Hanna or the kids, please come by and say "Hello!". We want to personally thank you for your prayers, meals, rides, kind thoughts etc. It is sure to be a time of celebration and thanks!
09/25/2008 Short and sweet..........Lyle received word from his oncologist on Tuesday that he is in complete remission from his cancer!! The only thing we have to say is MIRACLE, COMPLETE MIRACLE! We thank the Lord for his blessings! The news hit Lyle about 100 miles outside of Tucson and he started to cry. Hanna asked him if he was OK and he only said "I can grow my hair now."
***
Lyle will have a brain MRI and CT scan in six weeks. The oncologist told us to have a good time, be a family, enjoy life and don't even think about cancer for six weeks.
***
Thank you to everyone who has been on this emotional journey with us. The transition from treatment to careful monitoring has already proven to be the start of a "new" journey with it's own, distinct, emotional issues. Thank you for your prayers. We will continue to update the blog.
09/21/2008 Surgery went very well. The Surgeon said that she didn't have to hunt around to find the tumor or have any difficulty entering his lung. That being said, Lyle didn't feel real good when he woke up! Breathing was difficult and he remained on Morphine through mid morning the next day. He was discharged (earlier than we would have liked) a few hours later with a prescription for oral pain medication. We stayed in Tucson that night (never left the hotel) and returned home on Sunday. It was a long drive. Hanna doesn't drive quite as efficiently as Lyle!
***
Lyle said recovery this time is much better than what he experienced last December. He is still in pain but stopped the oral pain medication because he hated the way they made him feel (never mind they dull the pain). He is napping every day but is able to walk around without a lot of shortness of breath. Every now and then Hanna will see him turn a bit gray and will remind him to breath deep! Lyle has gone out to the job site (Hanna was watching him like a hawk!) several times this past week. Hanna swears if she wasn't forcing him to take it easy he would be there trying to work away! The family took a trip to the Yavapai County Fair yesterday for a few hours. The girls had their faces painted, everybody saw some very large cows and the kids had a few bags of cotton candy. We skipped the rides because Lyle isn't quite up to spinning in circles upside down and he is too big for the kiddie rides!
***
We have an appointment with the Surgeon tomorrow and the Oncologist on Tuesday. This requires yet another overnight to Tucson. Surgeon only has office hours on Monday. Oncologist only has office hours on Tuesday and Thursdays! We should know the outcome of the pathology of the Tumor (Surprise, it's Melanoma!!!) and have formulated a plan for future treatment by the time we leave on Tuesday.
***
Thanks to Patsy for dinner(s) this past trip. They were so appreciated. She makes a mean BBQ sandwich! Thanks to Grandma and Grandpa Minkler and Regina for their taxi services. Thanks to Nana for sleeping over. She made it through another surgery (Jake had a rough period this visit!). Thank you for your continued prayers and thoughts.
***
Please pray for Lyle's sister Lynn. She and her husband had a car accident several weeks ago near the Chino Valley Post Office. Somebody hit them head on. Lynn continues to have problems, including some recently diagnosed broken ribs caused by the accident. Dave got the better end of the deal and has recovered more quickly.
09/09/2008 It's show time. Lyle is scheduled for surgery this Friday 09/12/2008 to remove the remaining mass out of his right lung. Surgery will be at 9 am in Tucson at University Medical Center. (Check in is at 7am!) The surgeon said that her plan is to make two small incisions, one for a camera and one for a tool. She then plans to remove a pie shaped section of the lung that contains the mass. One of the incision sites will also be used for the chest tube. If things go well, she said it should take her about 20 minutes to complete the surgery and Lyle would go home in about 24 hours. On the other hand, if she is unable to locate the mass, the lung is scarred from chemotherapy etc then surgery could be more intrusive and take longer. Recovery may then be extended.
***
We'll be going down to Tucson on Thursday evening and have accommodations booked though Sunday morning. (Hanna didn't want to leave town immediately after Lyle's release, just in case his recovery isn't as smooth as they promise!) Recovery should be two weeks. Hanna plans on staying home with Lyle.
***
Nana will be staying with the children. Regina will be taking Jacob to Jazz band practice on Friday. Grandma and Grandpa Minkler will be running their taxi service for the kiddos! The only thing that we need (sorry for the short notice) would be dinner on Thursday, Friday and Saturday and your prayers. Thank you everybody for your help!
***
Lyle ended up not having his chemotherapy yesterday due to the impending surgery. He may continue to have chemotherapy after he recovers but we will be addressing that on 09/22/2008 when we speak with the doctor. The neuropathy and swelling in his feet continues to be an issue.
09/04/2008 Boy, Hanna has been slacking off on the web page!!! Since the last post, Lyle has had a new pet/ct scan. The report from the scan shows there are NO areas of cancer that the scan was able to pick up. They scanned Lyle from head to toe. That being said, the final tumor in his right lung is still there. It is unchanged from the scan in July. The nice thing is that it didn't glow (glowing on the PET scan indicates cancer that has absorbed sugar laced with a radioactive isotope) but according to the doctor, it needs to come out. It is better to be safe than sorry, and the only way to truly know if that particular tumor is melanoma is to cut it out and test it.
***
Cut it out means another open lung surgery. (Lyle still complains of periodic pain in the left lung from the surgery he had at the end of November 2007.) This also means that Hanna will be out of work again for about three weeks, if things go smoothly. We will know more after Lyle's surgical consult on 09/08/2008. He will also have another CT scan the same morning so the surgeon can have the most up to date information before final decisions are made.
***
Lyle's legs continue to swell off and on. The more pressing problem now is the numbness that he has in his feet more often than not these days. The months and months he has been on the Abraxine has taken its toll on the nerves in his feet. We pray that the damage isn't permanent. According to the doctor, the chemotherapy continues until he has surgery. There may also be additional chemotherapy after the surgery.
***
Thanks to Nana who continues to come every week to the house. Thanks to Grandma and Grandpa Minkler for their taxi service! Thanks to Regina for getting Jacob to Jazz Band Practice at 6:30 in the morning (yes AM) this coming Monday. We are so grateful for all of you that continue to pray for Lyle, our family and all the other families we ask you to pray for.
***
On that note, Mary and Clint are back in Prescott for a few weeks. He has finished radiation and must take a four week break before chemotherapy begins. The radiation shrunk the biggest tumor enough that he can eat small amounts of food at a time. He continues to receive nutrition from his feeding tube. Mary has returned part time to work. Continue to pray for strenght, wisdom and healing for their family.
***
Lisa's recovery from breast cancer is still going strong, Her chemotherapy and radiation have been completed for months now.
***
Meghan has her weekdays filled with Marching Band practice. Their first performance is this Friday at the Prescott High School football game. Halle was selected to be Lisa's TA (teacher's assistant) this school year. She is thrilled to be helping! Jake is participating in Jazz Band, which has awful hours. We have to leave the house at 6:30 am. Hanna has dropped him off more than once in dripping wet hair and slippers! Emily has been helping Hanna with her Sunday School lessons and is working hard on her 5th grade studies. Baby Ben is learning to tie his shoes. He asks every day how many more days until his birthday In case you are counting, there are 111 days when he wakes up tomorrow. He will be five Christmas eve.
07/24/2008 The blessings continue. The final tumor is still in the upper portion of Lyle's right lung but......it is beginning to crumple up or collapse on its self like a rotten tomato. We are so grateful. Lyle continues with the Abraxine Chemotherapy. Tomorrow is his last infusion of this cycle. Then we have a week off. At the end of the next cycle, he will have a PET scan of his entire body. If the results show that there is still only the one remaining tumor, we will consult with the surgeon and set a surgery date to have it removed. Chemotherapy will continue after the surgery. That is the plan at this time.
***
Wanted to say thank you to Nana again and again and again for her tireless dedication to watching the children every week. Thanks to Nancy for her meatloaf, to Patsy for taking Emily hither and yon and to Lisa for the play days she has with the children. Thanks to Lyle's guys who continue to work hard when he is away and to Hanna's co-workers to continue to help her out at work! As always thanks to everyone for their prayers and all their encouragement.
***
To catch you up, Lisa has completed her breast cancer treatment. She looks and feels great! On another note, we are asking for prayers for Mary, one of Hanna's coworkers and her husband, Clint and their two adult boys. Clint has been diagnosed with cancer that has spread to each of his organs (except his brain) and has been found in his bones. He is currently on oxygen and has had a feeding tube inserted in his stomach to provide hydration and nutrition. Please pray for strength, wisdom, peace and healing. They are receiving treatment at this time in Phoenix.
***
The children return to school August 4th. Mom and Dad are very happy!!!
06/29/2008 Lyle had his Abraxine Chemotherapy infusion on Friday. The treatment in Tucson went off without a hitch other than the nurse did contact the doctor about Lyle's "cankles". (Yes canckles is a word. ) Lyle 's legs and ankles are swelling. Off and on he has no ankles. On Friday and Saturday if you pressed down on his lower legs it was like pressing down on a piece of bread. Remember how your finger print stays in the bread? That is what his lower legs were/are doing. He is trying to be a good patient and elevate his legs above his heart to assist his body in removing the fluid. ( It is hard to slow him down long enough to put his feet up though!) He continues to drink lots of water. We were told to contact the doctor if his legs began to ooze fluid (gross!) We have a week off from treatment (Fourth of July) and then we are back down to Tucson for every test the doctor can think of. Hopefully the swelling will be something that resolves on its own shortly.
***
Thanks to Nana and Papa for watching the children on Friday. Papa had them alone for an hour or so. He even made them dinner. Ben loved his "puh-sketty". Thanks to everyone that continues to pray for us and the cards that friends and family have sent.
***
Emily and Jacob were baptised this evening. They were beaming when they got done. It was a truly lovely sight! (Over 40 people at Church were dunked in a pool on the patio. ) We are so blessed to have these children.
06/26/2008 Hello! Vacation is done. Camp's are half done (Halle and Jake went to UCYC and Meghan is currently at camp in Colorado with Calvary Chapel). Two birthday parties completed (Jake and Emily). We have one Vacation Bible School under our belt (one more to go) and summer is in full swing! The summer schedule can be more hectic than the school schedule.
***
We had every intention of beginning Abraxine Chemotherapy in our local area this month. Things didn't work out like we had hoped. Lyle's first appointment with a local cancer clinic didn't go well. Hanna had set the infusion appointment up a month in advance. She was told by the office staff that Lyle would have to meet with the local oncologist immediately proceeding the infusion. The Oncologist from Tucson called the Oncologist from our local area. Hanna hand carried Lyle's medical records to the local clinic. The Cancer Center faxed Lyle's Abraxine dosage three times to the local clinic Unfortunately during the appointment on 06/19/2008 the doctor asked Lyle when his next infusion was. Hanna informed the doctor it was scheduled for after the doctor's appointment. He led Lyle out to the infusion area and told him to select a chair. The nurses response was they had no medication. Long story short (after Hanna hysterically crying and multiple phone calls to the Tucson Cancer Center) the local clinic sent someone to their clinic near Flagstaff to pick up Abraxine. We were told to return several hours later. We did.
***
The saga continued. When we got there they took us to a back room and told us that they couldn't treat Lyle if we didn't produce $2000 to cover the medication. Hanna explained, as calmly as humanly possible by this point, that the insurance had been covering the medication for months. The clinic made twenty minutes worth of phone calls to the insurance company and finally decided that they wouldn't need money. The other shoe fell. The clinic didn't pick up enough medication for Lyle's normal dosage of Abraxine. We took what we could get. The infusion was given but was administered over more than a half an hour. (Protocall for this medication is that it all be giving in the span of 30 minutes to be effective.) After all of this, the staff asked if we would be returning next week for treatment. We politely declined. Hanna called the Tucson Cancer Center as soon as she stepped out the door. She scheduled his appointment for the following week in Tucson and left a message for the doctor about the smaller dosage of medication and the length of the infusion. The nurse called back and told us the Doctor wasn't overly worried, there wasn't a lot that could be done at that point and they would see us next week for his Abraxine. Yikes! It was so stressful and we both wasted an entire day of work running back and forth to the local clinic. The next day Lyle went to Mexico for a three day missions trip. It was only 105 degrees there. He kept hydrated and was blessed to have been able to participate. He came home safe and sound!
***
Lyle's next Abraxine Chemotherapy is tomorrow. We skip the week of the Fourth of July and then the next big day is 07/10/2008. He will have his blood work done, a brain scan, a CT of his chest area, chemotherapy, an appointment with the oncologist and the dermatologist. We are going down the night before (Wednesday) as our day will begin at 8:30 (Thursday). We hope to be home Thursday before the kids go to bed .
***
See below for photo's of vacation. Check out Hanna's siblings web pages in the link's section. Our apologies for the radio silence since the last post dated 05/22/2008. It is aout 11 in the evening and Hanna has managed to locate a little bit of time to update the blog.
05/22/2008 Ben is singing in the bathtub as all his army men float around him. Jake, Emily and Halle tossed their backpacks in corner of their room when they got home today. Meghan has her social schedule all arranged for the entire summer. School is officially out and all of the kids are looking forward to the start of summer. (Disneyland is now only 10 days away!) Lots of thanks to our neighbor Beth, who lives across the street from the bus stop. She kept an eye on the kiddos at the bus stop every morning. (She even made sure that nobody parked in her line of site! ) Beth, you deserve the next two months off!
***
More good news! Lyle will be able to undergo his Abraxine Chemotherapy in Prescott Valley starting with 06/19/2008. (This will even allow Lyle to go with our Church to Mexico on a missions trip the next day!) Hanna hit the phones and the fax to make the arrangements and after several days everything fell into place. Lyle's doctor visits and scans will be continue to be done in Tucson, but eliminating the weekly drive to Tucson for a thirty minute infusion of Abraxine will help so much. Nanna will get her well earned break!
***
Lyle's visit with the Doctor last Friday also netted some additional information. He will continue on the Abraxine Chemotherapy for an additional two cycles and then he will be scanned again around the end of June. If there is shrinkage of the remaining tumor, he will get two additional cycles of Abraxine Chemotherapy and then another scan. We will continue on that course of treatment until there is no shrinkage of the tumor. When the Abraxine is no longer causing the remaining tumor to shrink, Lyle will get two final infusions. At that point, the only remaining tumor is a candidate for surgical removal. Of course that means opening up his right lung, a week in the hospital and three weeks of recovery at home.
***
Thank you for al your continued prayers. We are truly blessed by you.
***
We are off to Tucson tomorrow for another infusion. Thank you to Nana for supervising the babies yet again. Everyone have a wonderful Memorial Day weekend!
05/13/2008 Praise Jesus! Some great, better than great news! Lyle's CT Scan was done 05/09/2008. All, ALL the tumors (including the possible lymph node in his chest) but one is GONE!!!!! The pleural effusion is shrinking and his one lung is no longer "sticky". The remaining tumor is present in his upper right lung. Thank you for all the prayers. We truly believe this is a miracle. Our hearts are filled with joy at the blessings of the Lord. Keep up the prayer. Hanna keeps telling everybody to not stop praying! Lyle isn't out of the woods yet, but we are on the way!
***
The Nurse Practitioner that gave us the good news said this was the only piece of good news she delivered all week. Please pray for her and all of the staff at the Cancer Center. They have such a difficult job and they truly care about the people they serve. Also pray for our fellow cancer travelers that didn't receive such positive news this week. The cancer journey is a hard road that isn't easily traveled without Jesus.
***
We travel again to Tucson this Thursday for another treatment with Abraxine Chemotherapy and a check up with the Doctor. We hope to discuss Lyle's progress and options for biopsy of the final tumor for conformation that it is melanoma or that it is old scar tissue etc.
***
Scroll down for pictures of our recent trip to our local park. We didn't have all the kids with us that day but sometimes the smaller group lends itself to a more relaxed outing.
05/05/2008 Lyle's Abraxane Chemotherapy treatment on 05/02/2008 went great! The icing on the cake was that the drive went smoothly as well. (No major accidents, herds of cows etc!) Nana ended up taking Ben with her to her doctor appointment in Cottonwood on Friday. Ben had a tummy bug and he wasn't feeling well enough to go to school. Papa took lots of pictures of Ben playing in the fountain and tossing his hat on his head. Posted a few photos below for your viewing pleasure. Scan way, way, way down.
***
The Cancer Center called last week to reschedule Lyle's scan and follow up appointment to Friday 05/09/2008. The doctor had a schedule change. It works out much better for us traveling on Friday's anyway. (What a bummer to travel on Thursday and then haul yourself out of bed to go to work the next day!!!) Pray for good results from the scan. We are hopeful as Lyle continues to feel well. He keeps telling Hanna that this is he best he has felt in 18 months.
***
Thanks to Patsy for her transportation of Emily to and from volleyball practice/games the last few weeks! Thanks, as always, to Nana for her tireless support of this family!
***
Countdown to Disneyland: 27 days.
04/28/2008 Didn't realize that the page hadn't been updated in so long. Our apologies to the die hards that watch the page weekly. Lyle has almost completed the second cycle of Abraxane treatment. A cycle is three weeks of treatment with one week off. We'll do the math for you. Lyle has had five treatments of the Abraxane Chemotherapy. He has the sixth on 05/02/2008. His first CT scan since starting the new therapy is 05/08/2008. We are very excited and hopeful that the scan will show the cancer retreating. Lyle says that he feels better now than he has in over a year. (The tumors were first noticed during his bout with pneumonia in 04/2007.) He is in such good spirits and continues to work. Hanna finds him an inspiration. Lyle keeps telling her that he is going to "beat this thing". His hair on his head continues to thin. He is keeping it short at this point. Lyle is still displaying his famous mustache!! He is very excited about that.
***
Prayers were answered. The insurance company approved the treatment with the Abraxane Chemotherapy. We have, based on Hanna's calculations, now reached our catastrophic out of pocket costs for the year, the amount of $5000. It was all the action of the Lord. We are so thankful that we don't have a $100,000 in medical expenses.
***
Meanwhile, the rest of the family is gearing up for the family trip to Disneyland. Ben should be able to participate more this year. He grew quite a bit since the last trip. We all hope that he will meet the height restrictions this year. You should have seen the melt down last year when he found out he was to little to ride the "Star Wars" ride. Yikes!
***
Emily continues to play volleyball. The season is passing so quickly. Thanks again to Patsy for the many times she has provided transportation for Emily to/from games/practice. Halle, Jake and Emily were on the Honor Roll again this quarter. Meghan continues to go to church with us on Wednesday evenings. Meghan and her little friend are planning on going with the Church this summer to camp. Ben continues in his efforts to amass the largest rock collection on the planet. There is no playground, yard or driveway that is safe from his collecting. He had his pockets so full of rocks he "collected" recently, that his pants were falling down! He loves his rocks.
***
Thanks go out to Nana who continues to make the weekly trek to our house to get the kids on and off the school bus on treatment days. Treatment days would be a lot more difficult without your help! We need to get a "Nana Rocks" shirt for her.
03/31/2008 This new Chemotherapy is so much kinder to Lyle. He has had two treatments and still is feeling quite well. He went to Church this weekend, went to work for a few hours and played the Wii with the kids. He was a little fatigued but some naps seemed to help. We have a third treatment of Abraxane this Friday and then a week off. His next appointment with the Doctor is 04/17/2008. Lyle's clotting level still continues to fluctuate due to his diet. It is amazing how green leafy vegetables (all that vitamin K) can cause your blood to clot faster. We, of course, want a slower than average clotting factor due the the blood clot that remains in his lung.
***
Now for a little background on Abraxane. According to the Doctor this medication is administered using a Trojan horse of sorts. The medication is wrapped in a protein. The cancer needs protein. The cancer draws in the protein and wa-la! the medication is in and the cancer is none the wiser. For a more scientific discussion of the process and lots of cool diagrams and pictures, view the following link: http://www.abraxisbio.com/rnd_platform_nab.htm
***
Thanks to everybody that has been calling to see if we need any meals cooked. Right now, Lyle and Hanna are driving to Tucson and back the same day. Lyle's Abraxane infusions take about 30 minutes once they get the IV into his arm. That is much quicker than the administration of the DTIC infusions, which took well over an hour. We still have travel time, but most days we can get home before 6pm. It does make for an early morning. Just think, poor Nana gets up even earlier than we do!
***
Mustache alert: Lyle said to put the word out.......he still has his facial hair. Nobody in our household has EVER, EVER seen his lips as they have been hidden behind his full, lush mustache for decades. We are still patiently waiting.
***
Hanna has a million thank you to send out. She finally put in for donated leave at work. The response has been phenomenal. We will never know who donated their own vacation time, but our family feels blessed by the good will of Hanna's co-workers. Thanks to each and every one of you.
***
Check out our five bunnies! They are shown below in the Minkler Family Photo section!!!!
03/21/2008 We are on a new course of treatment. Lyle's DTIC Chemotherapy was changed yesterday. The new version of Chemotherapy is called Abraxane, www.abraxane.com. It is FDA approved for treatment of metastatic breast cancer. There are clinical trials underway for its use for other hard to treat cancers such as melanoma. Because this is a FDA approved drug, the Doctor can prescribe it for off label treatment such as use in treating melanoma. The problem is that insurance companies generally don't want to pay for off label treatments. We had to sign a note yesterday at the cancer center promising to pay if the insurance will not. According to the finance department Blue Cross Blue Shield will deny their claim for payment as Lyle isn't being treated for breast cancer. The Cancer Center will appeal the decision and provide information to the insurance company as to why Lyle needs the off label treatment. If they don't pay, each infusion is about $2600. He is infused three weeks in a row and then the fourth week is a non treatment week. $7800 dollars per week if we have to pay out of pocket. We are hopeful that the insurance company can be persuaded to pay but not sure they will. We wonder how many t-shirts we have to sell to come up with $7800 per month? Anybody have any good slogans or designs?????? How about "Go Lyle!" or "Run Lyle, Run!".
***
There is a bright side to this. If this treatment works, after six cycles he would be able to receive the infusions at a cancer clinic closer to home. He would have to go to Tucson to see the Doctor but it may save us a few trips. Lyle's doctor told us of another man, a plumber, that was on this treatment for 28 months. After 28 months they discontinued the treatment for a variety of reasons, but after monitoring the plumber for a year, his melanoma had not grown or spread out of control.
***
Side effects for this treatment are interesting. It causes you to loose ALL your hair. Not just on your head but your eyebrows, eyelashes, arm hair, leg hair, armpits and personal areas too! Gone. Hanna's sister Dorothy said that will be a money saver when it comes to buying hair care products. Lyle said he is gad he won't have to shave! The kids agree that Dad will look like a naked mole rat! (Hanna has always had a thing for Mr. Clean anyway.) He may also develop some neuropathy in his hands and feet that may become permanent and the usual effects such as fatigue, low blood counts etc. Overall though, Abraxane should leave him felling much better than DTIC.
***
We also spoke with the doctor about treatment with a vaccine through a drug trial. Lyle didn't qualify for the drug trial we spoke about in the last post. He did not have the genetic tissue type that he needed to qualify. That is OK though because there are other drug trials in the pipeline that will be using vaccines. We expressed our interest in them but there are none ongoing at the Cancer Center in Tucson at this time. Some should be coming around in the next year or so. The doctor also showed us the latest CT scans. It appears that some of the nodes in his lungs may have disappeared or were not visable on the scans for some other reasonn. The largest one though, grew a couple of millimeters. There is also a lymph node that may be involved and there were some suspicions growths on the chest wall. Unfortunately without hacking into Lyle to do a biopsy on every little suspicious piece nobody knows for sure if the lymph node or growths on the chest wall are cancerous. Also the biopsy of the pleural effusion that we thought was so good is also not definitive. The doctor stated that even though the sample taken didn't show cancer cells it didn't mean for 100% there was no cancer there or that the cancer didn't cause the fluid build up. Either way, his system has been compromised by the melanoma and he needs the entire system treated. Hence the Chemotherapy.
***
We sat down with our Pastor this past week and have come away refreshed and with a more positive outlook on our present situation. We need to stop focusing on the cancer and work on our relationship with Jesus, each other and our children. Lyle is not going to die today. Our children are also watching how we deal with this challenge and are forming their own habits for dealing with hardships they will eventually face. We want to look at the melanoma as a chronic condition at this point. It gives us more focus on the rest of our relationships. It makes a person tired when everything you do revolves around an illness. We want to revolve around Jesus and each other. Cancer sucks but it doesn't have to make everything suck.
***
Thanks again to Nana for watching the children. She reports that they were angels and didn't fight one bit! (NOT!) Thanks to Regina for picking up Ben after school. Also thanks to Lisa and Chris who took on the big kids this week and took them back an forth to Tennis Camp, let them hang out and play with their kids and even fed them. On a side note, Lisa had her last round of Chemotherapy this week. She moves on to the radiation shortly. Still smiling she is!
03/14/2008 Lyle went down to the Tucson Cancer Center Tuesday 03/11/2008 for treatment. He did not receive Chemotherapy that day. We also need to report that we have been slightly inaccurate in our description of "fluid in Lyle's lungs". Chalk it up to lack of medical training or misinterpretation on the part of lay persons! Technically the fluid he is having trouble with is called "Pleural Effusion" or according to the medical dictionary at http://www.answers.com/topic/pleural-effusion?cat=health a "Pleural effusion occurs when too much fluid collects in the pleural space (the space between the two layers of the pleura). It is commonly known as "water on the lungs." It is characterized by shortness of breath, chest pain, gastric discomfort (dyspepsia), and cough." There is a lot more on the web page about it, but you get the gist.
***
Hanna explains it like this, a small zip lock bag like item that is filled with fluid and located between Lyle's lung and his chest wall. Now that we have that out of the way.....Lyle didn't receive Chemotherapy on Tuesday because the Doctor wanted a sample of the fluid in the zip lock bag thingy. He was checking to make sure there was no cancer cells in it. Cancer cells in the fluid may have indicated that the Melanoma had spread. The sample was taken on Wednesday 03/12/2008. The Cancer Center faxed the results to Hanna just a short time ago. The lab results read "Negative for Neoplasm. Scanty cellular material." The nurse had a smiley face next to the results. Hanna looked up the definition of neoplasm. Neoplasm is a tumor or an abnormal growth of tissue. Guess Lyle's sample did not contain any of that kind of material. Based on that information and the smiley face, we assume that Lyle's sample was clear of cancerous material. We will confirm when we go to the Cancer Center again next week.
***
Ah...next week. We are heading back down to Tucson again. Four lovely hours with what seems like non-stop construction. (Really there is only construction north of Phoenix and from Picacho Peak State Park http://www.pr.state.az.us/Parks/parkhtml/picacho.html to Tucson. It sure slows us down though!) We have an appointment with the Doctor at 8:30am on 03/20/2008. We get to decide at that time if Lyle will continue with Chemotherapy or perhaps will try another drug trial. Hanna ranks the success of treatment like this: If the tumors shrink, the treatment (Apply the scale to Lyle only of course.) gets an "A". If the tumors stay the same size the treatment gets a "B". If the tumor's grow the treatment gets an "F" and we move on to something else. So far, with the chemotherapy alone, the tumors are not increasing in size (Per the scan completed 03/11/2008. The blood clot was still visible.) so that therapy gets a "B" on Hanna's scale of success. "A's" and "B's" according the the Doctor are both good but treatments that cause a tumor to shrink are much much better! Lyle wants to obviously be cured and Chemotherapy will only keep this cancer at bay for so long. That is why we are exploring another drug trial involving a melanoma immunization and a immune system booster (MDX 010 or also known as Ipilimumab for those of you who care to Google!). More on that later because to even qualify for the study he has to have a tissue type of HLA-A 0201. Is your head spinning yet? Ours is. Long story short, we need your prayers for wisdom. We will of course be speaking with the Doctor in detail about Lyle's options at this time. He is shooting for the treatment that will give him an "A"! We will keep you posted.
***
Lyle has felt pretty good this past week because Chemotherapy was delayed. The sample of fluid from the zip lock bag thingy, which was obtained by inserting a needle into his upper back, between his ribs. The technician missed the first try and hit a rib. Lyle said it had a vague "thud sound" but didn't really hurt. The procedure required him to not lift anything heavy or hammer until Saturday. He went to work off and on to supervise the guys but has been home quite a bit of the last two days. Hanna returned to work Thursday and Friday as Lyle promised to behave himself and follow the instructions not to lift or hammer.
***
Thanks to Nana for watching the children during the most recent trip. She has her hands full again next week as everybody is on spring break. Hopefully the weather is nice and the children can ride their bikes! Thank you Patsy for providing dinner yet again! Spaghetti is one of the favorites in our house!
03/04/2008 It was the evening of band concerts. Jake and Halle had one at the Junior High. Meghan had one at the High School. Lyle and Hanna had to split up to see them all. Lyle took Emily to see Jake and Halle. Hanna took Ben to see Meghan. The music was wonderful and Ben actually sat down and had a good time listening to the music! They are all growing up so fast.
***
Lyle had his blood work drawn today. His clotting level is still good. No change in his medication. He is relaxing now, watching some Sponge Bob Square Pants cartoons. Our favorite cartoon!
02/28/2008 Lyle, Hanna and the kiddo's attended Church last night for the first time on a Wednesday in almost four months. It was wonderful. Pastor prayed over Lye and Hanna asking for healing among other things and anointed Lyle with oil. It moved them both to tears. Emotions can be very raw at the foot of the cross. Lyle and Hanna are both thankful for his prayers and genuine concern for our family.
**
Lyle and Hanna sat in the very back during the Church service to avoid any germs. Hanna neurotically had Lyle use the Purell after every handshake. Emily won a cucumber for being able to write her name on a grain of rice. Ben actually stayed in the big boy classroom without a fuss. Jake and Halle felt great about seeing their friends. Meghan attended the high school class with her friend Leesa. It was a good night. It felt like we had been away for too long. Hanna will just have to deal with her fear of germs attacking Lyle and whip out the Purell again on Sunday!
***
Another silly story, blissfully having nothing to do with cancer. Ben had hiccups the other night. He came over and sat on Hanna's lap. He said "Mommy, I have hip-ups." Hanna told him that it was awful cute how he said "hip-ups" but the big boy word is really said HIC-UPS. Ben agreed and said the word correctly and went about the rest of his evening. The next morning he woke up and came and sadly sat on Hanna's lap. He said "Mommy, I am sick." Hanna of course, thought fever, another day off work bla bla bla. She asked "How are you sick?" Ben said "I have hip-ups again!". Hanna told him that hiccups don't mean your sick and then launched into an explanation that they are muscle spasms of the diaphragm bla bla bla. Ben could have cared less! He hopped off her lap and said "I'm glad I'm not sick." and went to eat breakfast. Note to Hanna, four year olds don't care about the science of hiccups, they just want to make sure they aren't sick!!!
02/27/2008 The spell checker is working again! Hanna was horrified at the poor proof reading that she had done! Her deepest apologies for everybody that had to suffer!
***
Lyle is off the anti-clotting agent injections!!! He is maintaining the proper clotting level (The goal is having his blood clot between 2 to 3 times slower than the normal clotting level. His level was 2.7 two Monday's ago and it was 2.4 when he had it checked on 02/26/08. ) while only taking the coomidin. That is a huge blessing. Lyle was SO tired of giving injections to himself every twelve hours!
***
Want to thank Patsy for taking care of the meal on 03/11/2008. It will make it so much easier on Nana! Lyle and Hanna are amazed with the everyone's kindness and the prayers said by family, friends and complete strangers. Thank you so much! Next appointment at the Cancer Center in Tucson is 03/11/2008.
***
Lyle is still working. He feels much better than he did during the seven days that followed the last Chemotherapy treatment. (He didn't work the full week and went home several times to take naps.) He is coughing more lately but we hope that is just leftovers from the cold we all had a few weeks ago.
***
We are looking forward to our summer vacation. Yea, Disneyland! We are trying to have a positive outlook on Lyle's health, but took out insurance on the vacation this year on the off chance he isn't well enough to travel. Positive thinking peppered with a dose of common sense is the new motto! On that note, Lyle and Hanna are in the process of completing a Will and related paperwork. Never a fun topic, but it really needed to be done. It had been put off too long.
02/19/2008 Pardon all the misspelled words. The spell checker in blogspot appears to be not working for the last few weeks. Can't cut and paste from Microsoft Word either. Bummer! Now you know Hanna's secret. She is a heavy user of spell checker!
***
Lyle received his Chemotherapy this past Thursday. He is mighty tired. He returned to work today and promised to take it easy. It is the ashey grey glow to his skin that is the most alarming! His color was a little better this morning though. Lyle is still is having to inject himself with the anti-clotting agent while he waits for the coomidin (Did you know that coomidin makes up or did make up rat poison? The high amounts cause the rat to bleed to death and die!) to thin his blood to the proper level. The goal is to have his blood clot 2 to 3 three times SLOWER than normal. When they checked his blood last week his figure was 1.1 times slower than the normal clotting level. We have a way to go! The Cancer Center upped his dosage of coomidin and he had his blood checked again yesterday at the local lab. The results were faxed to the Cancer Center and we are presently waiting for the doctor to review the results and tell us to stop the injections of the anti-clotting agent or to keep the injections ongoing and up the dosage of the coomidin again.
***
Lyle's brain MRI (done last Friday) was excellent. No spread of the Melanoma to his brain as of Friday. His doppler testing (ultrasound) done on his legs also provided good results. There are no blood clots in his legs at this time either. The not so good news is that his left lung continues to see an increase in fluid. There was some fluid present on the CT scan done 12/28/2008 but the volume of fluid continues to increase. The Doctor is keeping tabs on the fluid and has a plan on how to remove it from Lyle's lungs if it continues to be a problem. The fluid could cause his lung to collapse. According to the Doctor, the fluid most likely is caused by the cancer. Lyle says he has felt rattling in his left lung since his surgery in 11/2007.
***
Lyle's next appointment at the Cancer Center is 03/11/2008. That morning he will have another CT scan and more blood work. The Doctor will review the new tests to see if the fluid in his left lung has increased and if the cancer is responding to the Chemotherapy. If the cancer is responding he will continue on the current course of treatment. As of the last CT scan, the cancer had, in the Doctor's opinion, neither grown nor shrunk. If the cancer hasn't responded after this third round of Chemotherapy, then we will have to consider a new course of treatment. If the fluid in the left lung continues to be a problem, a tube may have to be inserted into his chest to drain it. We aren't sure if the tube stays in place for some period of time or it is put in and taken out on the same day.
***
Nana will be taking care of the children again on the 11th and 12th of March. We really need somebody to cook/deliver a meal on 03/11/2008 as Nana will this time have to work both days too. (Cancer Center changed the day of the week that the appointments usually are set up for. Nana had arranged her work schedule to have her days off later in the week when we were having our appointments.) Despite what Super Nana says, we know she will be TIRED and having somebody make the evening meal is a HUGE help.
***
The children are doing well. They are being so much help and very understanding of all the time that Mommy and Daddy are gone. Ben told Hanna this morning that he had a "good dream". Hanna asked him what it was about. Ben said that he dreamed that Nana was coming over and brought him a toy! (Oh little Ben, it isn't a dream! Nana always brings Ben a treat when she comes!) The bigger kids all have great progress reports from school as well! It is amazing how life keeps trucking along despite the craziness of cancer.
02/10/2008 Round trip cost of gas from Prescott to Tucson: $100, Lunch in Cancer Center coffee shop: $12, Having a worry wart of a wife that calls the Cancer Center to tell them you aren't feeling well and they in turn have the CT scan results rushed (looking for infection) which then reveal a blood clot in Lyle's lung: Priceless.
***
There ya have it folks, Lyle has a small blood clot in his right lung. Had we not called the Cancer Center to tell them he wasn't feeling well, it could have been days before we found out or we may have had to turn around and return to Tucson halfway though our trip home on Friday. The Cancer Center said they would have had to hospitalize Lyle if they hadn't come up with Lovenox injections that he gives himself twelve hours apart. He continues with Lovenox injections through next Thursday and adds coomidin taken orally beginning today. He is no longer a part of the PI-88 drug trial due to the clot. The clot could have been caused by the PI-88 or even by the cancer. Nobody knows for sure. We hope that he will be able to get his Chemotherapy on 02/14/2008 but everything is up in the air for now. The most pressing issue is the blood clot. That has to be cleared up before treatment for the cancer can continue. Lyle has been taking it easy this weekend so the clot won't dislodge before it dissolves.
***
Thanks to Patsy for her yummy dinner on Friday. It was such a blessing after a long day to come home and not have to worry about cooking. Thanks Nana for watching the children after school. Thanks to Grandpa Minkler for getting them off to school that morning. (Ben woke up and informed Grandpa that he wasn't going to cry!) Also thanks to Regina for picking up Ben and taking Halle and Jacob to the Valentines dance at school. Things were a little hectic this time due to the blood clot complication but thanks to our helper's extra efforts everybody was safe, fed and to all activities on time!
02/07/2008 It has been a long week! Hanna has strep throat but has been on antibiotics for almost four days now. All the kids have the kennel cough (That is what we call it, we don't really have a dog infection.) and Lyle is sick with whatever upper respiratory infection is going around right now. Lyle visited the dentist last Friday. They did x-rays, a visual exam and fixed his loose crown. He has been such a good brusher since his last visit. No cavities!! He does have a missing tooth in the back that needs to be replaced but he will have to wait until Chemotherapy ends before the dentist can do that or clean his teeth. Cancer Center wants him to hold off on dental procedures that cause bleeding.
***
Lyle is tired. He really should, in Hanna's opinion, work a few hours less a day but Lyle keeps plugging along, one foot in front of the other. You have to admire a man that continues to work even when he is sick. His strength is amazing.
***
Tomorrow Lyle has his first CT scan since his treatments began. As we have discussed before, the CT will determine if his treatment continues or a new course of action is taken. Simply, it is good if tumors stay the same size or shrink. It is bad if the tumors grow. We won't have results given to us for about a week, though the cancer center will have the finished report in a day or two. When we visit the Cancer Center on 02/14/2008 we will be meeting with the Doctor to discuss how things are going and get the results of the CT scan. Hanna continues to try to convince herself that a week isn't so long.
***
Lisa, the family friend with breast cancer, is doing well also. She had her second bout of Chemotherapy within days of Lyle. She is amazing! Her hair as fallen out and yet she looks more beautiful than ever! She has a smile on her face and continues to work also. Thanks for every body's inquiries about Lisa!
01/29/2008 Yikes it was some nasty weather last night in the higher elevations of Prescott! Hanna slid down the driveway in the van this morning trying to get to the main road. The kids of course loved all the ice. Ben kept singing about how much he loves skating on the ride to school. The child has never been ice skating for real. He thinks slipping and sliding in the parking lot at school is skating! Oh the innocence.
***
Lyle feels a little bit better today. He came home at lunch and took a nap. He went back to work later in the afternoon. His color is returning to his cheeks. He doesn't have the sickly white coloring to his skin like he did this weekend! He didn't take his anti-nausea medication today either. Ben has a runny nose and slight cough so we are of course busy hand washing and sanitizing as much as possible. Hopefully it is something that everybody has already had! We just keep trying to kill those germs.
01/28/2008 Lyle received his second dose of Chemotherapy on 01/24/2008. He became dizzy at the end of treatment and it lasted about an hour. He has been feeling under the weather since. Hanna drove to the hotel and the entire way home on Friday. Lyle stayed home all weekend. (It really is a bummer to miss church, but we can't stop worrying about the sneezing, coughing and hand shaking that goes on during service! Jacob and Halle, though, did go ice skating on Monday with the youth group.) Thank goodness the weather was crummy here today so he is home resting on the couch again. (He was planning on going to work. Hanna has threatened to tie him to the chair to get him to rest today!) He had a nose bleed last night but it quit after five minutes of pressure. He has taken his anti-nausea medication since Friday, every 12 hours. He feels queasy. Kind of like the flu, but without the body aches. He, of course, has continued eating without to much of a problem. Hanna kept the diet as lite as Lyle would let her. He loves food! If he isn't eating, then she knows that he is REALLY sick!
***
On another note, Nancy what wonderful meat loaf! Thank you so much! Lyle ended up having some in sandwiches on Saturday! We are so grateful to everybody for their help! Thanks also to Regina, who went shopping at Costco with money that Jill gave her. We have some quick meals that can just be popped into the oven! Thank you Jill and Regina!
***
The kids are doing well. Meghan's basketball season is down to the last three games. Jacob's wrestling has finished up. He placed sixth in the regional competition in his weight class. Halle continues with her video game club at school. Emily is looking forward to playing volleyball at the YMCA with her friends. Ben of course never slows down! He makes everybody laugh and laugh. He is the family clown. Hanna continues to work in between Lyle's appointments and chemotherapy.
01/23/2008 We have heard that some folks are having trouble leaving remarks on the web page. We have tried to tweak the set up of the blog to allow you to make comments without having to sign up for a google account. Hope it works. If all else fails, you can e-mail Lyle and Hanna at minkler07@netzero.com. Pray for good weather on Thursday and Friday as we expect a winter storm to visit the state. We travel to Tucson on Thursday for Chemotherapy and return home on Friday.
01/22/2008 Received a fax from the Cancer Center yesterday. Lyle's CT scan is scheduled for 02/08/2008 in Tucson. You ask why we go to Tucson for CT scans? The Cancer Center needs to have the scans done on the same machine and within their system so they don't have problems accessing the information timely. Lyle has worked every day (Monday-Friday) except for treatment and travel days since his first treatment. So far so good! It is a little sick, but we look forward to treatment days. The alone time is grand! Those that know the family pretty well understand that Hanna and Lyle don't go out without the children very often. Alone time is very precious, and we will take it, even if there is treatment involved!
***
Thanks to Grandma Minkler's friend Nancy for dinner this Thursday. She is making MEATLOAF!! We haven't had meatloaf in forever and a day! Hanna's meatloaf always seems to turn into a mystery puddle in the bottom of the pan. Thank you Nancy for your generosity!
***
We also received a call from Patsy today. She is the mother of Emily's friend, Dempsey. She will be bringing dinner 02/08/2008 when we are in Tucson for the CT scan. Thank you Patsy for your phone call and coordination of Volleyball this year. Our minds are so focused on treatment and just the basics of getting kids to and from school etc that we hadn't even called the YMCA to find out when Volleyball registration was! Thanks for taking care of us.
***
Thanks to Regina who has, after several conversations, convinced Hanna that she REALLY wants to pick up the kids on treatment days! Anybody that has survived one Ben's temper tantrums and comes back for more truly has the patients of a saint! Thanks for giving Grandma and Grandpa Minkler a break from pickups!
01/18/2008 What a LONG trip to and from Tucson we had yesterday. We hit the Phoenix rush hour (with Hanna driving) and sat, sat and sat some more in traffic. We returned home after 8pm. Nana was delighted to go home! Thanks again to Nana for watching the kids and to Regina for picking three of them up last night.
***
Lyle's blood work looks fine. He was able to get his next installment of the PI-88 injections yesterday without a problem. The Cancer Center also checked his vital signs. He has his second round of Chemotherapy next Thursday. There is about three weeks until his next CT scan. If the tumors haven't gotten any larger, in other words they shrink or stay the same size, then he will continue with the PI-88 injections and Chemotherapy (DTIC version). If the tumor's grew, then we will have to revisit the treatment plan.
***
Lyle keeps saying that he feels better than he did before he began Chemotherapy. His spirits are bright and he has continued to work with very limited interruption to his normal schedule. That my change as the treatments continue though. Effects of the Chemotherapy can be cumulative the research nurses tell us.
01/15/2008 Lyle's check up last week went great. We drove about 7 hours round trip. (Lyle drove the majority of the time. Hanna goes to slow he says!) The Cancer Center checked his blood for abnormalities. They took his temperature and blood pressure. They administered that day's injection of PI-88 and gave us the next seven doses. That was it. This Thursday is the same story. Long drive for less than an hour of tests and questions but that is how it goes when you are in a drug trial!
***
Lyle really feels good! He keeps saying how much better he feels now compared to before the first round of Chemotherapy. He continues to work building houses. We keep praying that the next CT scan shows shrinking of the tumors. T-minus about 4 weeks and counting until the next scan. Please pray that the PI-88 and Chemotherapy, assisted by his own immune system, rage a successful battle in Lyle's body. Next Thursday is the second round of Chemotherapy.
***
We would love for you to put our friend Lisa on your prayer lists. Her battle with breast cancer continues. She also has undergone her first round of Chemotherapy and her spirits are bright. Hanna called her up today, as a joke, to compare how much her insurance is paying for her Chemotherapy costs compared to what our insurance is paying for Lyle's! It is really nice for Hanna and Lyle to have folks like Lisa and Chris to walk the cancer journey with. They are such a wonderful family!
***
Thank you to Regina for picking up the children this Thursday. Our endless thanks to Nana for coming to sit with the children after school. Our Tucson trip is just for the day this time. It makes it a little easier on baby Ben. He likes his Mommy and Daddy to put him to bed.
01/09/2008 Lyle receives Chemotherapy every 21 days at the Cancer Center in Tucson. The next two Thursday visits are checkups to make sure there isn't adverse reaction to the Chemotherapy or the PI-88 injections. PI-88 injections are self administered injections, given daily at home.
***
Lyle is still doing well. He is experiencing some taste disturbance now. It could be caused by the Chemotherapy, the PI-88 or the anti-nausea medication. The usual foods that taste "good" are now unappealing. Spaghetti seems to be a hit though! Citrus flavored water is more tolerable than regular filtered water. We look forward to the next CT scan. It should be conducted in about five weeks or so. It is our prayer that the CT scan will show the cancer responding to the medications he is taking. Thanks Aunt Lynn for dinner on Thursday!
01/07/2008 Sorry we didn't post this weekend. The phone line in our area appears to be on the fritz. Hanna, the cheapskate, won't get anything but dial-up. Hanna had to update the blog when she was on break at work. Lyle's first treatment went well. He received the first Chemotherapy late Thursday afternoon. We left the Cancer Center after 6:30pm completely exhausted but very happy to have begun the Chemotherapy. Lyle was didn't feel sick during or after the treatment the first day. Because he is in Arm B of the drug trial, we had to stay overnight (Thank you Grandma and Grandpa Minkler for the Hotel Coupon again! Thank you Nana for watching the kiddo's back home!) and return to the Cancer Center in the morning for a follow up.
***
Friday morning Lyle ate a good sized breakfast. He still didn't feel sick. At the Cancer Center they taught him how to administer the PI-88 drug. He gives himself a injection of the experimental medication everyday now. He is a pro! The injection leaves a bruise about the size of a quarter and stings a little as it is administered. Lyle felt so well even after the second PI-88 shot, that he drove all the way home on Friday.
***
Hanna was in search most of Friday afternoon of the anti-nausea medication the Cancer Center had prescribed before we left Tucson. Come to find out, there were six pills of Kytril in all of Prescott that we know of. (We called and/or visited multiple Pharmacy's. Wal-Mart doesn't even carry the stuff. Next time we will fill the medication in Tucon near the Cancer Center as we will have more luck obtaining medications! Prescott Walgreen's will be able to access prescriptions filled in Tucson. ) The entire staff of Walgreen's was wonderful. They will obtain the remainder of the 60 tablets for us. The total cost of 60 Kytril tables is $4000.00. Talk about sticker shock. With our insurance we paid $30. The tablets are made in Sweden and are specifically to keep nausea and vomiting at bay during/after Chemotherapy treatment.
***
Saturday, just shy of 48 hours after treatment, Lyle's nausea rose to a level that he took one of his $66 anti-nausea tablets. They last 12 hours. He rested most of Saturday and Sunday and went to work this morning. We understand the cumulative effects of the treatment may cause the nausea and fatigue to increase after each treatment. All in all, he did quite well and some of the pre-treatment anxiety has calmed. We just feel better to have started the healing process! Thank you for all your prayers.
01/02/2008 1:53pm GOD IS GREAT!!! He has so blessed this family. Hanna received a call about an hour ago from the Cancer Center. Lyle has been assigned to Arm B of the drug trial. That mean he gets the PI-88 from day one of his treatment. Treatment begins tomorrow. Lyle and Hanna are overwhelmed with thankfulness and joy. Blessings to eveybody that has been praying so intently about the drug trial. God is gracious, merciful and righteous!
01/01/2008 Happy New Year! Emily and Hanna stayed up till 10pm and watched FOX NEWS ring in the new year on the east coast, then went to bed. Everybody else had been in bed since 8:30. Lyle and Hanna were awaken at 12:05 when the City of Prescott set off their fireworks. (A few neighbors must have been contributing to the celebration also!) Hanna managed to go back to sleep but Lyle was up till 3am watching the Twilight Zone marathon on SciFi channel.
***
We still have no word on which arm of the drug trial Lyle has been enrolled in yet. Cancer Center did called us yesterday as they needed to clarify a few items and to remind Lyle that he can't take any Ibuprofen while in the trial. Acetaminophen only for his back pain. (They said that the doctor could prescribe something stronger if needed. Lyle just sucks it up and keeps on moving. All that carpenter work is rough on a guy's body. Cancer just doesn't realize it is messing with the wrong guy!)
12/29/2007 10:40pm For anybody looking for a little humor scroll to the bottom. (Also check out the comment section where folks are adding their own jokes and one liners.) We have added a section for cartoons that poke fun at cancer and other stuff. Prior to Thanksgiving we would have never thought the cancer cartoons were funny, but walking the cancer walk gives you a different spin on what is humorous. If you are offended in anyway, we apologize.
12/29/2007 Trip to Tucson was great. We went down on Thursday evening after work and spent the night in a very nice hotel. (Grandma and Grandpa Minkler had a coupon for a "free night". ) We headed over to University Medical Center Friday morning and completed Lyle's CT scan. According to the Cancer Center, this CT was to establish a "base" from where they could track progress, good or bad. The CT involved drinking a "smoothie" that was laced with some kind of product that assists in the CT photo taking. Lyle was instructed to drink the "smoothie" over 45 minutes. He then was taken to the imaging department where the scan lasted about 30 minutes.
***
Meantime, Hanna wandered the halls. She found some very interesting facts out about "x-ray's". Wilhelm Conrad Rontgen (1845-1923) discovered the strange "ray" 11/08/1895. The German physics professor produced an image of the interior of his wife's hand within two weeks. The professor named the mysterious ray "x" for the mathematical symbol of the unknown. Wilhelm Rontgen refused to seek patents on the new technology. Despite many offers, he also never endorsed or profited from x-ray products. He was the recipient, according to the display at the hospital, of the fist Nobel Prize in 1901.
***
On with the rest of our day. We proceeded to the Cancer Center after we grabbed a quick bite to eat. We showed up early, 1145 (Our check in time was 12:40)and it was no problem at all! We love the Cancer Center. They are so positive and never get upset with Hanna's 10,000 questions or her note taking. At the Cancer Center they took some labs (base readings again), completed an EKG, gave Lyle a general physical and completed the pre-trial questions. One of our nurses, Terry, has the patients of a saint! (She even recognized Hanna in the lobby.) She was able to guide us in completing the questions even while we bombarded her with our own questions! Talk about taking control of the conversation and using her skills to re-direct us time and time again. We left that day about an hour and a half after we should have initially checked in. Talk about fast! We left with a bounce in our step, ready to begin treatment. We won't know until 01/02/2008 what arm of the drug trial that Lyle has been assigned to. Treatment begins 01/03/2008.
***
While we were at the Cancer Center, we checked out the gift shop. They had the usual items but one particular shirt/hat caught our attention. The shirt simply said "CANCER SUCKS". Hanna laughed! For all the positive attitudes and good thoughts that one musters while walking the cancer journey, EVERYBODY has a "cancer sucks" moment now and then. Somebody was just bold enough to put it on a shirt. We didn't buy one, but at that moment we realized that it is OK to be "down" about the situation now and then.
***
Drive back to Prescott was great until we hit Phoenix at rush hour. Sat for 25 minutes at virtually a dead stop trying to merge from I10 to I17. Somebody had a fender bender at the exchange. Many thanks again to Nana for watching the children. She is the master at laundry! Hanna can never keep up, but Nana has made it a mission to make sure the laundry is done when we get home. It is the little stuff like laundry, a meal, a free hotel room, fervent prayers or somebody playing taxi for our kids that warms our hearts. We thank everybody for their generosity and love once again. The road ahead of us is going to be long but with the support that you guys are providing it will make our trip just a little easier.
12/26/2007 Hope everybody had a joyful Christmas yesterday! Our children are still bouncing off the walls! Great news!!! Chemotherapy begins 01/03/2008! See the needs listing for dates we need meals, kids picked up etc. January is a busy month. There will be at least four trips to Tucson for treatment and checkups. Thankfully it appears that most of the appointments are in the afternoon. That will limit the overnights that Nana will have to cover for us! (Ben cry's in the morning when he wakes up and Mommy and Daddy aren't there. Cry's for every poor soul that has the morning shift, except for Nana!)
***
Friday, 12/28/2007 we compete the testing for the drug trial. We will know by the date of the first Chemotherapy treatment if he was accepted for the drug trial and what arm of the trial he will be in. Cancer Center called today. They needed phone numbers for Prescott Dermatology, Yavapai Regional Medical Center and Lyle's Primary Care Physician. The called me back to let me know that Prescott Dermatology is closed until January. The Cancer Center can't get the medical records they need. According the Cancer Center they don't think it will stop Lyle from participating in the drug trial. We didn't know that they hadn't obtained the records yet or Hanna would have run over and obtained a copy to hand carry to them.
***
Meghan is 15 today. Happy birthday Meg! Don't forget to scroll all the way down the page. There is a new section showing family photo's.
12/24/2007 Ben is now four years old! The festivities occurred a few weeks ago, but today is the official birthday. Ben blew out the trick candles without batting an eye! He even managed to not spit on the cake. For those of you that know our family well, you know that Hanna is a Christmas procrastinator. She hates to wrap! Good news! Lyle held a marathon present wrapping session (as he does every year) on Saturday when Hanna was at work. She only had a few to take care of this morning. And, it is now 2:40 pm and ALL the wrapping is DONE! Plenty of time to get ready for Church. Emily and Ben are singing in the children's choir.
12/21/2007 We would love to here from folks that have survived cancer. We didn't realize how many of our own co-workers, friends and family were survivors. You guys are everywhere! Please post your stories. (E-mail us if you are shy Minkler07@netzero.com) They would be a blessing to us. (16 days, or less, and counting till treatment begins. The wait is the worst! Every morning Hanna wakes up and prays "Thank you Jesus for yesterday. Please give us one more day with Lyle. His children need him." Every day that we wait for treatment is just one more day the cancer gets to grow unchecked. It is unnerving. )
12/20/2007 Check out our friend Lisa's blog. She and her family are several weeks ahead of us in their own cancer journey. They have been a invaluable source of information and support. http://lisahoskingsurvivor.blogspot.com/ Hanna thinks she would have exploded by now were it not for her talks with Lisa and her husband Chris.
12/20/2007 Countdown to start of treatment: 17 days (or less as Lyle must start treatment WITHIN 8 days of 12/28/2007) The attached link is all the technical stuff about the Phase II Trial that Lyle is poised to take part in. http://www.cancer.gov/search/ViewClinicalTrials.aspx?cdrid=439493&version=HealthProfessional&protocolsearchid=3989195 The information on that web page is virtually what they handed us at the Cancer Center in Tucson. There are three additional trial sites now in the US including the Cancer Center.
Lyle is working part of the day now. Hanna calls him several times a day to make sure that he takes time to rest, including returning home to take a nap. He is not supposed to lift more than 30 pounds for a few more weeks. Surgeon wanted time for the muscles in his chest wall to heal.
12/19/2007 Hanna could no longer resist researching PI-88. The following link has information about the Phase I trials of PI-88 in melanoma patients: http://www.biotechnews.com.au/index.php/id;1931992542. (Lyle is poised to take place in the Phase II trials.) It has some very interesting and hopeful information.
Thanks to everybody in Prescott and across Arizona, The United States and frankly across the world that are praying for Lyle and our family. Many of you we don't even know but thank you for your brotherly love and deep concern. The local body of Christ has been wonderful and we thank you for every prayer list you have put Lyle and our family on. Hanna was assisting a client today and he took Lyle's name and told her that he would pray for him. She was so touched and encouraged.
12/18/2007 Lyle's sister Lynn is going to make a meal on on 12/28/2007 when Lyle and Hanna are in Tucson. Thank you Lynn. Hanna's Mom will be watching the children for us. Thank you Mom.
12/18/2007 Contacted Lyle's local doctor yesterday to see if we could get an appointment with a nutrition specialist (a dietitian???). We have been reading the Lance Armstrong (Thank you Dorothy!) book regarding his fight with cancer. He really focused on diet during his treatment, as much as he could. He did get to a point during chemotherapy where he ate whatever he could stomach (apple fritters) just to get the calories. Thank you to everybody that has been asking about Lyle. Please feel free to pass the blog address along. Don't forget to leave a note in our comments section. If you have questions, that is the place to ask them!!! We have been asked how young Lyle is. He will turn 49 in March.
12/14/2007 11:30AM Got a call at 11:30 this morning from the Cancer Center. All of Lyle's pre-drug trial testing will be done 12/28/2007. He will go to the University Hospital in Tucson for a CT scan of his chest, abdomen and pelvis. Check in time is 9AM. He can't eat after 7AM that morning. He then will go to the Cancer Center for the EKG, labs, LONG list of questions and to meet with the Nurse Practitioner. According to the drug trial rules, treatment must begin within 8 days. That means Lyle's first chemotherapy treatment must occur by 01/07/2008.
12/14/2007 We never thought we would say "We are blessed with slow growing melanoma" but we are! The oncologist believes this melanoma could have been growing in Lyle's lungs for three, four, five years or more! The other good new is that Lyle is not dead. More than fifty percent of patients with melanoma in their lungs are dead within seven months of a medical source first finding the tumors. (The tumors were first found in 04/2007 when he had pneumonia and a chest x-ray.) He is a walking miracle in our opinion!

Now, on to the treatment. The best move we could have made was to go right to the Tucson Cancer Center. If Lyle had received chemotherapy in Prescott then gone to the Cancer Center he would have ruined his chances for any experimental treatment. The drug trials frequently want patients that have not received any treatment. Lyle has applied to be part of a drug trial because there have been no new drug therapies that "work" since the 1970's. The title of the drug trial is "A Phase II Study of PI-88 with Dacarbazine in Patients with Metastatic Melanoma".

In English, that means that he will take part in a study that gives all participants chemotherapy. There are two arms to the study. Arm A gets chemotherapy alone FIRST. If that treatment alone isn't causing the tumors to shrink or more tumors appear then he will be given the PI-88. Arm B of the study gets chemotherapy AND the PI-88 at the same time. We are praying that he gets in Arm B of the study.

Now PI-88 works by "blocking new blood vessel growth in tumors (starves them of nutrients)" according to the study material. Now the good thing about being in a Phase II study is that they have tried the drug on RATS and a few HUMANS. Both groups in a Phase II study WILL get the new drug. Folks in a Phase III study are not so blessed. Half of patients in a Phase III trial will get the medication and the other half get a placebo (sugar water etc).

Hana took 10 pages of notes during our 5 hour appointment. In addition to Lyle's version of melanoma being a slow grower, he has NO NEW TUMORS in his brain or any other organ. Now that doesn't mean the cancer isn't trying to spread. There may be cells that have traveled to other portions of his body (80 percent chance), but the chemotherapy is what we hope stops any new growth.

Surgery followed by chemotherapy was sort of an option at this time. There are multiple tumors in both lungs. The tumors could be removed BUT that would leave Lyle missing a significant portion of his lungs AND the tumors could grow right back. (Kind of like kicking over a mushroom in your yard and it comes right back.) If they grew back, he most likely couldn't handle another surgery as it would leave him to little amount of lung to function. We may consider surgery again if we can get some of the tumors to go away or shrink so that there does not have to be so much lung removed.

The other option that we didn't feel was right at this time was treatment by Interleukin-2. This treatment involved putting Lyle the ICU for five days of INTENSE treatment that caused his body's own system to ramp up a auto-immune defense against the cancer. He would be out of the ICU nine days and do it all over again for three or four treatments. The problem is that this only works for less than five percent of patients.

We didn't want to miss our chance at the PI-88. Chemotherapy alone is 20 percent effective. We pray that the chemotherapy in conjunction with the PI-88 will be his ticket to recovery. We can always go back to the other options and more options may be available as we walk this journey.

The drug study lasts 18 weeks, but he can continue on the treatment as long as it is working. We hope to begin treatment the first or second week of January. The drug company pays for the PI-88 and related tests that are not "customary" to treatment of the melanoma. Our insurance will pick up a significant portion of the chemotherapy, blood work, CT scans etc as this is part of the "customary" treatment. We do have a cap of $5000 for out of pocket expenses.

Chemotherapy will be administered once every three weeks. The PI-88 will be administered at home daily by injection. We will be making several trips a month to Tucson for treatment and testing. Trips on occasion may be overnight. (It takes Hanna about 4 hours and 15 minutes to get from our house in Prescott to the Cancer Center. We drove through rush hour in Phoenix on the way down and the way back yesterday.)

We expect to hear from the Cancer Center in the next few days. They should be giving us appointments for the pre-trial tests (CT etc). After all Lyle's info is submitted to the company conducting the drug trial, we will then know for sure that he qualifies for the experimental treatment. We will post the news here!!!

Jesus has been walking with us. He has led us to the right doctors. He has brought a feeling of peace to the family. Regardless of the outcome, we know that Jesus will take care of Lyle, Hanna and the kids. Pray that we continue to seek his will.
12/12/2007 Hanna drove to Phoenix today and picked up the CD's for the MRI and the PET scans. She was given the written "report" of the MRI findings. The PET scan crew stated that they never give the reports directly to the patients. They were asked to fax the result to the Cancer Center. The MRI report had three "impressions". First, minimal T2 FLAIR hyperintense white matter foci, typically attributed to microvascular ischemic changes. This can be seen in asymptomatic patient's as well as patient's with history of migraine headaches, hpertension and or diabetes. (English anybody??????) Second, Negative for MRI evidence of intracranial malignancy. (That is the good news, no brain tumors!!!) Third, mild mucosal thickening of the paranasal sinuses.

The Cancer Center also called today. They want Lyle to arrive at 10:30 as he is now scheduled for an appointment with their dermatologist. One more attempt to find the primary source of the melanoma. They will check everything from the soles of his feet to the top of his head.

Hanna also went to work today for about four hours. She was glad for the chance to see her friends. Lyle went to the lighting shop today, answered a ton of phone calls, checked on his current construction project and took some naps. He is tired but happy to no longer need Hanna to drive him about.
12/11/2007 Cancer Center in Tucson called at 10:30. Lyle's appointment is this Thursday at 11am. We were told to get copies of his PET, MRI and CT on CD and bring them with us to the appointment. Hanna will drive to Phoenix tomorrow to pick up the CD's from St. Joe's and will get the CD from YRMC today.

Everyday Lyle recovers a little bit more from his surgery. Though he doesn't like wearing a scarf out in the cold, he is cooperating! He takes several naps a day. He can walk without to much difficulty breathing on level surfaces. Inclines pose more of a problem and he has to rest.

We spoke with his surgeon today. He called to check up on how Lyle was feeling. He still wants Lyle to take it easy so the healing of his chest muscles will not be disrupted. Lyle plans to return to work later this week for about two hours a day. He will have to limit his lifting to a board at a time and nailing with his left hand isn't recommended right now. (Lyle is a lefty.) Lifting restrictions will be in place for about three more weeks. His incision is also much better, though the muscles above the incision are still swollen. The incision is almost 12 inches long. It extends under his left armpit. (Bit of trivia. According to the surgeon, Lyle's chest muscles are as thick as a big mac or are the size of the average person's thigh muscles! )
12/10/2007 Lyle received his MRI and PET scans today at St. Joseph's Hospital in Phoenix. (Did you know that St. Joseph's Hospital began as a school run by Catholic Nuns? Hanna had several hours to kill while she waited for all the scanning to be done!) We received no results today. They should be sent to Lyle's doctor in Prescott Valley in the next two or three days. He was instructed to stay three feet away from everybody for 24 hours, drink lots of water and flush twice when he used the potty. We are still trying to get his appointment set up with the Arizona Cancer Center at the University of Arizona in Tucson. Hopefully that will be achieved in the morning.
12/07/2007 The idea of the blog was born complements of Hanna's sister Dorothy.
12/05/2007 Lyle diagnosed with melanoma in his lungs and discharged from hospital.
11/29/2007 Lyle entered AZ Heart Institute and had an open lung biopsy. The surgeon removed one large nodule and sent it to Maricopa County Pathology Department for diagnosis. Lyle's left lung partially collapses three different times over his six day "visit". He ended up with three chest tubes. One was removed the day before he was discharged. The other two were removed the morning he was discharged.