Good News!

I just got back from Ken's appointment with the oncologist/hemotologist. The blood test showed that Ken's hemoglobin levels went up from 8.3 to 10.2 in about a month. With 11 being Ken's normal count, the doctor is pleased with the improvement and sees no need at this point to do further testing to find out the cause of the low levels. I am so grateful for the improvement. Ken will continue to take iron pills three times a day as his iron levels have not come up yet. His next appointment is in the beginning of June. He will also have a CAT scan to checkup on the abdominal area and the liver around that time. Right now, we are hopeful that what ever caused the low hemoglobin levels is taking care of itself.

So Ken is back to traveling a great deal and should be heading to San Jose in the beginning of next week. He will be gone a great deal of April and May. It is always hard for me to have him gone so much. I think that the kids struggle with his absense too, although they are less vocal about it.

Kayla's play --"The Pirates of Penzance" starts next week. Several of you asked about when her performances are so I am including them; Wednesday April 1st , Friday April 3rd and Saturday afternoon April 4th. Let me know if any of you still want to come. I can get you more detailed information.

Anyway thanks again for all your concern and prayers. I am grateful and consider this improvement a definite answer to prayers.

We love you!
Jeanine

No Answers!

Well, Ken had his colonoscopy and upper GI endoscopy this morning. He did fine during the procedures, but he is always very loopy afterwards. When the nurse took me back to see him, after the tests were complete, she told me that my job was to wake him up. That was a difficult task! The first time that I finally got his eyes to open he looked so disoriented that I wasn't sure if he recognized me. I asked him if he knew who I was and he said "yes, you're a leprechaun." The next time I got him awake he said that I looked pale and invited me to get in bed with him. He always has a great sense of humor, but was hilarious as he recovered from the procedures. I have to admitt I am always a little apprehensive about will come out of his mouth when he is has been drugged.

Everything looked relatively fine, nothing at all to give us answers on why his hemoglobin count is so low. The surgeon referred us back to our Oncologist/Hemotoligist. So I guess we are back to the drawing board. He has an appointment with him on Thursday morning, so I will let you know what that brings.

Thanks again for all your interest and concern. We still appreciate your thoughts and prayers in our behalf. It means so much

Apology and Informstion

I wanted to say sorry for taking a LONG break from posting. In all honesty I wasn't sure how many people were still reading this blog. I have had several people explain "I have been checking your blog and you haven't posted--I didn't know that all of this craziness was going on." So please accept my apology. I will try to do better. I think that I was hoping that maybe there wouldn't need to be anymore information shared, but that doesn't seem to be the case. Never a dull moment at the Legler's house.
Anyway here I go! I will try to get you up-to-date on the last few months. At the end of December Ken had his CAT scan. It took a while to get the results, but everything looked good (no cancer) except for the two hernias and the gall stones that showed up on the scan. We were ecstatic about the about no cancer, but were a little surprised by TWO hernias not ONE and the gall stones.

Ken's hernia surgery was already scheduled for January 28th. We contacted the surgeon to see if the new information would change to the surgery at all. He said that he wouldn't be dealing with the gall stones that would have to be addressed during another surgery, but he would be able to fix both hernias at once. Ken went to San Jose soon after the Christmas holidays and got home in time to do the pre-op tests. His EKG came back normal. We weren't so blessed with his blood work. On January 27th, Ken got a call from his primary care physician explaining that his hemoglobin count was extremely low and he wasn't sure if the surgeon would want to go ahead with the surgery the next day. He said that he would be faxing the results of the test to the surgeon. We never heard anything from the surgeon so we showed up bright and early on Jan. 28th for surgery. The surgeon was aware of the blood problem and had Ken typed and crossed in case there was a problem and a transfusion was needed during surgery. The surgery went relatively well. There was actually THREE hernias not TWO and the bowel was actually engaged in the hernias. What I thought would be an over night stay in the hospital actually dragged out to 4 days there. Ken was finally released at 8:00 Saturday night (Jan. 31st).

All during the stay in the hospital the doctor kept talking about a transfusion. They never gave him one. Ken's surgeon and oncologist/hemotologist were in contact trying to decide how to address the problem. Ken never had a transfusion although the nurses kept expecting it to happen. Ken has a hereditary anemia called Thalocemia. It can not be treated. A normal hemoglobin count is 13-15. His normal hemoglobin levels are 10 to 11. His count was 7.9 before the surgery and went down to 7 after the surgery. When we met with Ken's oncologist/hemotologist on Feruary 6th, he expressed his concerned about the reason Ken's count is so low. He wants a colonoscopy and upper GI series find some answers. They will be looking for a reason that Ken might be losing blood this might include a number of reasons one of which could be cancer.

Ken's surgeon doesn't want to do the colonoscopy and upper GI until Ken has healed a little more from the surgery as the patient's abdomen has to be filled with air to do these tests. So these test are scheduled to happen March 20th. We are anxious to get some answers and have been trying not to worry too much.

Ken's recovery from this surgery has been more difficult than the last two, which has surprised me. Who knew that hernia surgery would be so difficult? Ken's incisions has gotten infected. In fact, he went into see the surgeon on Feb. 20th because his incision was so sore and red. The doctor tried to draw some infection off with a needle, but didn't get anything, so he sent Ken home with an antibiotic. The next day the incision broke open and has been draining ever since. It feels and looks better than before, but Ken is very tried of having a stain on the front of his shirt. Even with tons of gaze taped over the incision it still leaks through.
I am hoping that Ken will contact his surgeon before he goes to San Jose next Monday, March 9th. He has completed his antibiotics, but he is still draining. I would hate to see the incision get worse while he is out of town. Anyway that is our crazy story as it continues on. I had hopes of having an ending to this story, but that doesn't seem to be the plan right now. We could still use your faith and prayers on our behalf. Thank you for your concern and love for us. It means so much!

On a funner note, my sisters reunion begins this week Thursday March 5th. We will be here in the valley and we will go up to St. Johns for a couple of days. My sisters Ann and Irene fly in at 4:00p.m. on Thursday and Lynette will drive in the next day after she gets done with work. We have a get-together planned with all of our neices and nephews that live here. I am looking forward to some laughter, memories and good times.

I will try to post some fun photos from the sisters reunion. I will let you know when we get some answers from the upcoming test.

Hoping that you are all well and happy!
Love,
Jeanine

More Surgery

Ken got home October 29th, which was wonderful to have him here for Halloween.  It always feels so much better to have him home.  He was able to make his 2 doctors appointments.  He saw his surgeon on Halloween afternoon.  Dr. Campbell agreed that Ken has developed a hernia along his surgery incision.  The hernia is  three fingers wide.  It will need to be repaired, but because the hernia is so large there is not the worry of strangulation.  We have scheduled the surgery for the end of January since Ken has another trip scheduled for work for most of December.  He will need a couple of months before he can doing heavy lifting.  

His oncologist Dr. Halber will schedule a CAT scan druing this month to get a baseline scan.  Then we will be able to check future scans with it.  Ken will also have his port removed while he has his hernia repaired.  

Home Again, Home Again....NOT

Ken was supposed to come home this weekend.  In fact we had high hopes that he would be home by today, because he was able to figure out the problem on the machine in Belgum after just a half day of working on it.  He is NOT headed home!  He just called me from Israel.  He got there safely and will be there for a week.  There is a problem with their machine there.  We were excited to have him home, because we miss him so much, but we are trying to adjust to a longer time away. He had to push back one of his Doctor appointments again, so no news on that front, yet.  

Germany and Belgum!

Thanks so much for all of your wonderful, joyful comments. Your celebrations added so much to our celebration. We ended up going out to dinner as a family on the Monday after his treatments ended and then a week or so later Ken and I went to the "Outback" so Ken could get his favorite "Alice Spring Chicken" with garlic mashed potatoes. The most meaningful part of my celebration came with having my heart drawn out in gratitude to my Heavenly Father for his loving kindness.


The relief of no chemo was interrupted prematurely by a phone call from Ken's boss inviting him on a "vacation" to Germany. After how supportive and kind his boss has been to Ken since this whole experience began in January, Ken just could refuse. He left on Monday Oct 6th to take care of some work related problems in Dresdan Gremany for a week and then he will go from there to Brussels, Belgum for two more weeks. It has only been a little over 2 weeks since he completed his chemo and he is still trying to get a handle on his diabetis. Because of these things and more, it was hard to see him leave. We are hoping and praying that he will have the energy and health he needs to accomplish all that is required of him.


He had to reschedule his month follow-up appointment with his oncologist, but when he does go I will let you know how everything is looking. Thanks again for all of your love, faith and prayers.

CELEBRATION TIME!

Dear Family and Friends,
After 6 long months of Chemotherapy, Ken is in the middle of his final round. Tomorrow at about this time he wil be officially through. Did I hear a few hoots and hollers in our behalf. I think so, all the way from Alaska to Chicago. YAHOO! Thanks for all the love and support. It has made all the difference.

What's next? Ken has his next appointment in a month. After that he will have a CAT scan to give a baseline reading. He will continue to have blood tests that look for markers in his blood. As the test come back negative, the tests and the doctors appointment will be scheduled further apart (maybe 3 months then 6 months). He will also be having a colonoscopy before the year mark of his surgery. Ken is excited to have a little more time to breath between medical visits. The bummer is that he is trying to deal with the diabetis and the nueropathy in his hands and feet, but let's not dwell on that!

HE IS DONE--Let the balloons rise, raise your voices in cheer and count the blessings with us!

We are still trying to find a way to celebrate the ending of a long difficult season. I am having a idea right now. Would you share with us, how you are celebrating Ken's courageous completion of a this arduous journey? (E.I. was it a smile, a prayer, a hug to a loved one, a song in the heart.) Part of our celebration here, will include enjoying your mini celebrations where ever you are.

My heart (and eyes) are overflowing as I am taking just a moment to revel in the depth of my gratitude today. Thank you again for the prayers, the love, and the support. They have carried us when we just couldn't do any more. I can't end this message without aknowledging the goodness of Our God and Our Savior who have carried us on eagles wings when we could not walk on our own. Thank you!

With all our love,

Jeanine, Ken and family

More Courage!

So Ken's doctors appointment for the blood sugar wasn't so fun. He is now dealing with diabetis. He has to check his blood sugar 6 times a day. OUCH! He is taking medicine and trying to understand what foods effect his blood sugar levels. The doctor also wants him to take cholesterol medicine and have his eyes checked.

I think that Ken is sick of doctor's appointments, being poked, bleeding, having bruises, taking medicine, ect., but he keeps on going and telling jokes, singing his songs and trying to find the joy the day. He inspires me!

The Light

We can see the light at the end of the tunnel. Ken started his 10th chemo session today. After this just one month to go. He is still experiencing numb fingers and toes so the doctor is not going to put him back on the Oxaliplatin. Ken's response to the doctor, "I was hoping that you would say that!"



Ken also made an appointment with his primary care doctor to check on his erratic blood sugar levels. He isn't looking forward to this appointment. If there is anything to report from that appointment I will let you know.

Brother Bonding

Ken and his brother Nathan are going to go camping tonight. They both took Friday off of work and they are going to pull his tent trailer up to the Payson area. Their brother Paul is supposed to meet them there on Friday after work.

Ken has been aching to go out camping with his tent trailer that he bought last year. I am glad that he found a way to make it work. Next week Ken has his 10th session. He certainly deserves a little down time and some fun. Hopefully he will take a few photos so I can post them.

More good news.

I got the results back from my heart holter. My heart is fine. I have what is called APC's. Which are Atrial Premature Contractions. The cardiologist said that the top chambers of my heart contracts prematurely at times. He said that this is a benign condition and that I don't need to worry about it. I have a clean bill of health for donating blood again. YES!

The bad and the good news!

Well, Ken has been dealing with the cold induced neuropathy ever since his first dose of chemotherapy. He takes 2 chemo drugs; 5FU and Oxaliplatin. The Oxaliplatin is responsible for the side effect of cold induced neuropathy. As long as the neuropathy is brought on by the cold stimulus there are no worries. But after Chemo session #8 (July 23-25) Ken feet and hands started getting numb without the cold. When the neuropathy changes like this, it can become permanent. When Ken went in on Augist 6th for his 9th session of chemo and told the doctor that his fingers and toes that were still numb, the doctor decided to skip the Oxaliplatin and only give the 5FU. Ken agreed with the Doctor and seemed relieved to have a break from that drug. So almost 4 weeks without that chemo allowed Ken to eat without reprecussions, his share of a warm macademia nut cookie topped with 3 scoops of icecream. YUMMY! The doctor will decide next week whether or not Ken with receive more Oxaliplatin. I think that Ken's toes are still a little numb, so I guess we will see what the doctor says

100th Birthday!

A little off the subject, but nonetheless very noteworthy, I went to my Grandpa's Burdick's 100 birhday celebration in Northern California on August 1st. We had wanted to make the trip into a family vacation but with all of Ken's time off of work for chemo sessions and gas prices so outrageous we decided to just fly me out. I hitched a ride from the airport with my brother Marty and Sue and family (thanks guys). I am so grateful that I got to go. My grandpa looked great. He seemed pleased to be honored by so many. We had 42 members of the Russell Burdick family there. It was great to see all my brothers and Irene. My nieces are growing-up to be lovely women and mothers. I am so proud of all my family.

A little more empathy!

Okay this is weird. I went to give blood on Monday (July 21st). The gal that was taking my pulse asked if I have an irregular pulse. Taken by surprise, I answered "no". She took it again and then had another gal come for a 2nd opinion. She thought my pulse was normal. So a third opinion was called over. She said that it was irregular. I was sent away without giving blood and what is more I was told that I wouldn't be allowed to give blood without a doctor's permission. When I got home, I called my doctor and got an appointment for Tuesday (July 22nd). The doctor checked my pulse and did an EKG which were normal, but she said that it's better to be safe than sorry, so she referred me to a cardiologist. The funny thing was that the cardiologist called me back that same day and made an appointment for the next day (July 23rd). (So quick!) I went in yesterday and had a heart holter moniter put on me. I go back today (July 24th) around 11:00 a.m. to get it taken off. I have a follow up appointment in a couple of weeks to find out the result.

Ken is on his 8th round of chemo with 4 left to go. His hemoglobin has stablized, so he won't need a blood transfusion. His blood sugar is still elevated and he still needs to look into that. It is hard to find more time off work for Dr. visits. He is plugging along. He is definitely getting more worn down and ready to feel more normal, but he complains very little and still helps a lot.

So the irony of all this is that I am better understanding how "unfun" it is to wear medical equipment all day and all night. Don't shower. Be careful of dangling cords. Don't damage the equipment . Where to put the equipment while using the restroom. Be sure and sleep on your back. Itchy tape, etc. We call Ken's pump the ball and chain. I get it a little better. I am anxious for noon to come because then I will be free! The part that I still don't get: having chemo pumped in my body and the side effects, the noise that the pump makes each time the chemo goes in, 2 days without a shower instead of one. etc. My equipment is just gathering data.
Ken's is killing cells.

So this experience has given me one more reason to celebrate my husband's courage. He is definitely a hero to me.

Over the hump!

This week is round 7 of chemotherapy for Ken. We can now begin to count down. 5 chemo sessions yet to go. Ken's blood is getting more anemic, so the Dr. will be watching that carefully.

Today is our 21st anniversary. Ken has said that it has been 21 years of wedded bliss. I think that is a little bit of an overstatement, but I am very grateful for our lives together. We have gone through so much that has strengthened our love for each other. We are blessed.

A Short Vacation to the Homestead

We took a short vacation up to the Whiting Homestead up in the White mountains this past weekend. It was a little bit hard because we left just after I finished my 6th course of Chemo. So Friday afternoon we drove up and it was nice but I was having a hard night getting any good sleep that first night. Saturday was also a little hard but we tried to enjoy it the best we could. It was mostly cool and we enjoyed mostly hanging around the cabin. We were able to take all of our kids and we also had Darrell's girlfriend Claire as well. I think she had a good time even when Darrell spent maybe too much time playing video games at times.

We were up there with Tom and Lynette and Wesley and Seneca. They had the four wheelers so we got to drive them around some and there was lots of water in the ponds and it was pretty cool when the clouds were out which was most of the time. It got a little bit dry towards the end on Sunday but it was raining around the area so it was still cool. We drove through some rain on the way out of Show Low as well as various places on the way down to the valley. It was a nice relaxful weekend even with Chemo being so recent.

Jeanine and the others played a lot of PIT and boy were they loud and argumentative. We were starting to think this was just a Legler trait but it seems it must be from the Burdick side after all. It was lots of fun.

Number 5

Ken just started round 5 of chemo today (wed. June 11). The doctor said that his white blood count is staying stable as is his red blood count. He has done well with the chemo and we have every reason to hope that he will continue to do as well. Of course, he will have the same yucky tastes, nausea, cold induced neuropathy and general low grade anxiety, but it could be so much worse! We have to take the time to count our blessings. It seems like just about everything has gone better than we expected or hoped for regarding his cancer. We are grateful for all the care and concern that we feel from so many loved ones. Your messages of love, interest and concern truely lift us up. We are grateful for Our Heavenly Father who is there to sustains us.

Many have asked about Darrell. He is still in Germany and will be home on Sunday, June 22nd. He seems to be enjoying himself immensely. Maybe I will post a couple of photos when he gets back.

Celebrations

On May 22nd we had a double celebration. Darrell graduated from Red Mountain High School and Ken had a birthday. He turned 51 years old. It was a bit of a crazy day, because of the weather. It was cold (in Arizona?) and rained a lot of the day. Darrell's graduation was scheduled outdoor. Because of the weather the school administrators split the graduates up. A-L in the auditorium and L-Z in the gym. We were in the gym. We only got 2 tickets per graduate. Some people were very upset. After the graduation ceremony we met back at our house for a graduation/birthday party. It worked out fine. We definitely are grateful for Darrell's graduation and for how good Ken is feeling right now, considering everything. We love each of you and feel your love concern, and support as we go through a difficult time.

Ken starts his 4th chemotherapy on Wednesday. He feels fairly well. He still says that he will be grateful when food tastes right again. The cold induced neuropathy is hanging on longer this time. It will be interesting to see if the Doctor adjust the doseage of the oxaliplatin. We will let you know how it goes.

Round "3"

Yesterday, (5/14/08) Ken started his 3rd round of Chemotherapy. He wasn't too anxious to start that process again, but he is making big efforts to keep his chin up. He is still feeling quite well so far, but he is having to be more careful about the cold induced neuropathy. It is getting more pronounced. We are trying to be creative about individually packaged food that can be stored on the shelf not in the fridge. Any way thank you for all the concern and the support. We love you.

Keep your fingers crossed!

So far Ken's second round of chemo has gone much better than the first. He started his anti-nausea medicine on Wed. April 30th, (the first day of chemo) and has kept it going since. He doesn't feel great and he is searching for something to eat that will help, but he hasn't thrown-up this time around. We are so grateful for the that. He says that he has a weird undescribable awful taste in his mouth that he can't get rid of. Another side effect that he is dealing with is temporary neuropathy which is that he can't touch or drink anything cold because his nerves are highly sensitive. It is hard to describe the sensation, but when he drinks or eats anything cold it feels like his throat is closing off. The doctor also decribed it as the pins and needles feeling when a foot or leg has fallen asleep. This side effect is cumulative and can become permanent if not watched carefully. It is very bizarre. Thanks again for all your prayers and support. It means so much and definitely bears us up.

Ken after two days of his chemo. Looking pretty chipper!

Ken taking a break before he goes in to get his pump removed and receives his shot of neulasta.

A close up look at the pump that he wears for 48 hours.