Lots to be thankful for!

 Where did November go? We had company the last two weeks of the month and it was wonderful to have such good visits.

Our niece Katie, her husband Carl and their youngest son Athan were here for a few days. Katie grew up here and wanted to come back to the area for her 30th birthday.

Kerri, Tim and I

My sister Kerri was here for a three days. Our brother came down from Burbank for the one of the days. It isn't often that we all are in the same place at the same time.

Jared was home for the week at Thanksgiving. Was good to see him. He went back to school and will be home again the second week of December. Then his final semester!

Thanksgiving was celebrated with my brother and his family. Dwayne carved the turkey!

Nathan brought a furry guest. His new cat 'Mister'. He finally came out from behind the couch and decided that we were ok.


Friday brought an unexpected, but very welcomed visit from Susan and Paul Munsey. Susan and I have been friends since we were 14. ( I won't tell you how long ago that was!) We even got in some beach time! It was a beautiful day.

Susan and I

Dwayne and I

Dwayne also had a round of chemo during this week. This time went very well. The chemo will continue for awhile longer. The doctor has not given an end date yet.

Nathan or Tim had everyone laughing

Even on chemo, he enjoyed his traditional sour cream chocolate cake! 

Sunday the 27th. we had a few friends over to celebrate Dwayne's birthday. Was a great way to end November! We have been so blessed by family and friends this year.

Not to sure what to say.....

Thank you, God! Wow! Amazing.......not enough adjectives!

This has been a roller coaster week. We had not heard any results the past two days, and agreed last night that we would call today. Found out this morning that meant ME calling the oncologist. Was hesitant to do it, but wanted an answer. 

Called about 11 and left a message. We have our niece Katie, her husband Carl and their 10 month old son visiting us this weekend from Chicago. We walked the beach trail later this morning and were on the San Clemente Pier around 11:45 when my phone rang. It was a blocked number and I was a bit apprehensive to answer it in public. But did, the sun had just come out from the fog and as I looked out over the waves, Dr. Cheng's nurse said "All the lesions are GONE! The MRI was clear". I had her repeat it, just to make sure I heard it correctly. She said it again!  I just stood there and cried! Katie said when I got off the phone, "you said all clear didn't you?" We had a great group hug on the pier!

Tuesday we will see Dr. Cheng and find out what the next step is in this journey. 

Again thank you for all your prayers and support! That just seems inadequate!!!!

Big Week Coming Up!

Well, Dwayne's last round of chemo went well. Not too many side effects after the first night. Makes a difference when the anti-nausea meds are taken! We are still waiting on one more signature for the new rehab, it is not moving very quickly. Going to push again tomorrow and see if I can get things moving.

Tuesday afternoon he will have his next MRI. It has been three months since the last one was done. Our prayers are that the chemo has taken out the last three lesions.

On Thursday we are looking forward to a visit from our niece and her husband from Chicago. They will be with us for four days.

As always, we are grateful for all of you in our lives.

October Update

We are in our new 'normal' and have developed a routine. I am teaching in the mornings and usually home by 1pm. Dwayne is doing things around the house,  kitchen cleanup, vacuuming, watering the plants, etc. That is a big help. In the afternoons we try to walk at least a mile, either on the beach trail or in the neighborhood.

 Yesterday, Dwayne was evaluated by a new rehab center. The physical and speech therapists had him go through their testing. He did well with the physical therapy and after going over the notes from his last PT, she was encouraged that after a month of no therapy he had not lost any ground. She will be working on strength and balance. His endurance is much better. We went to Sea World this past Saturday and he did the day without using the wheelchair!  Speech is still the area that needs the most work. Short term recall and aphasia are still a challenge.

Today he began his third round of chemo. This will go on for five days. The week of November 7th he will have the next MRI. We are praying that the last three spots are gone!

Thank you for being an important part of our lives.

English Translation, Please!

This was too funny not to share. Dwayne has been doing much better with his word finding, but there are still some he just can't find what he needs.

We have been trying to walk the beach trail near our house as often as possible. Sometimes going about two miles in about an hour and a half. A couple of weeks ago, we had finished the walk and because it was very humid that evening, decided to stop for frozen yogurt.  Dwayne was tired and didn't want to go in, so I asked him what he wanted. He told me vanilla, then I asked if he wanted something on it. He said he did, but could not remember the word. So, I went back to the stragity that the first speech therapist, Mary Beth, had said to use,"yes/no" questions. This usually works pretty well, and has taken out some of the frustration at times trying to communicate. So, I began with did he want fruit-"no", nuts-"no', chocolate chips-"yes, but with the feet and limbs attached". That one really threw me. Wasn't sure what to do with it. He still could not get the word out he wanted, and finally told me that I would figure it out. I was not as confidant. So, I went in and started looking at the toppings. Came out with 'cookie dough' on the top. He said he knew I would get it. Sometimes you just have to laugh!

Someone have an English/Aphasia dictionary I can borrow?

Sun setting over Catalina, from the beach trail.

Six Months!

Dwayne's new look!

Alice, Esther, and Barb
Three of the best friends you could ever hope for!
Happy Birthday to us.

It does not seem possible that we began this adventure six months ago today. At times it has gone very quickly, others times, it feels like we have be at it much longer.

 Well, we have made it through the first three weeks of the school year, and seem to have settled into a pretty good routine. The mornings that Dwayne has therapy, I drop him off at the hospital and then pick him up on my way home. He will be finishing his two months of rehab on Thursday and just doing speech a couple times a week. He will have his second round of chemo this week. Tomorrow in the doctor's office and then the five days of the at-home drug.

We finally did the head shaving last week. He never lost it all, but had places that were 3" long and spots with nothing. Kind of had the doc look from Back to the Future! It is returning, about a quarter of an inch long, and very blond. I guess we will see if blonds have more fun!

Last Friday, we helped in the surprise 50th birthday for Esther.  Since three of us have birthdays in the same week, it was easy to convince her that we were going out to dinner for our birthdays. She was not even suspicious. Fun evening and great friends.

Catching up!

Did August go quickly or what??

Tomorrow is back to school for me, just seems like last year ended. A few changes for me this year, I will be having a team teacher and I am very excited for that. I have known Shannon for a number of years and we will work together well.

Dwayne has made a lot of progress this month. He has now been in rehab for a month and they keep raising the bar on what they expect of him. They want to extend his therapy for another month. We are waiting on what insurance says on that.  During the past week, Dwayne and I have walked the local beach trail near our home four times! We have done about two miles, each time a little faster. This is such great progress, considering he needed a cane to get around the house just two months ago! His stamina is improving every week.

Sea World

The week before Jared went back to school, the three of us spent a day at Sea World. Longest outing he has done in six months. It was great! Slow paced enough for Dwayne and we always enjoy the animals. Dwayne used the wheelchair for the most part, but also walked in some of the less crowded areas.  Jared and I took turns pushing! It is hillier than you think there!

The weekend of August 20th, my cousin Diana and I took Jared back to Monterey. Hard to believe this is his senior year! We helped get Jared settled and then spent Sunday exploring Monterey. What a beautiful place. We stayed at Asilomar and it is so peaceful and a nice walk across the street to the beach. It was a good trip. Nathan came and stayed at the house with Dwayne.

Sea World-August 2011

Watching the dolphins

Jared back at UCS Monterey

Dwayne and I after the first time we walked the beach trail

The beach across the street from Asilomar.
Beautiful!

Dwayne began his new chemo last week. The first one was given in the doctor's office and it divided into two days. They want to make sure he will not have any major reactions. He did great. The second drug he took at home for five nights before bed. That one is unsettling his stomach some. He was given some anti-nausea that seems to be helping.

Hang On!!!

Dwayne and I met with Dr. Cheng, the local oncologist this morning. He had not seen Dwayne since mid July. He was pleased that his speech so much better. He went though the plan for the next chemo. We should have a start date by next week. There will be four months of the two new drugs and then another MRI. He also said they would work the chemo around the rehab schedule, so Dwayne does not have to drop that.

As we were finishing, I asked him about the MRI report. What did "significant reductions" mean? Well, he went through the three page report with us. The swelling is decreased in his brain. Three of the lesions have shrunk, one that was 10x10mm is now 1.3mm! Another that was 5cm in March is completely gone! Seven others they did not even comment on because they are no longer there!!!

We appreciate the prayers so much, thank you just does not seem adequate. Hopefully the new chemo will give a complete remission.

Good News!

We made it through the past few days. They have been anxious ones at times. The MRI was done on Monday afternoon. We went up to the UCLA specialist on Tuesday morning. We got there an hour early, we had allowed two hours to get there and made it in a little over an hour.  The traffic was great, not sure how I would have been had we gotten struck.

The doctor was great. He spent about an hour and a half with us. Asked some good questions, and Dwayne did well with the neurological part of the exam. But the MRI report did not get up to him on Monday afternoon like it was supposed to. He looked at all of Dwayne's MRIs. We had hand carried them, but did not comment on them. He agreed with what the two other oncologists have said and we'll see Dr. Cheng (the local oncologist) on Tuesday for the next step. Will be two new chemo drugs. The goal is to get a complete remission on this.

This afternoon the nurse called from Dr. Cheng's office with the MRI results. It shows "SIGNIFICANT REDUCTION" with the lesions! This was great to hear!

Thank  all of you for your prayers! We are headed in a good direction.

Back to Boot Camp!

Yesterday was a big step forward! Dwayne went back to the rehab unit for their outpatient program. This is where he was an inpatient in May. He will now go three mornings a week for their day program. The doctors and therapist think he is strong enough to be able to do the three hours sessions. He actually got approved three weeks ago, but we had to wait for an opening. The home speech and physical therapists who had working with him fought the insurance company to be able to keep coming until he got into the day program. He has made a lot of progress in the last month. Very grateful to them!

Next Monday and Tuesday will be important days. On Monday he will have the first MRI since May. I am a little apprehensive. Even if it shows all the lesions are gone most likely there will be more chemo. His local oncologist and the neuro-onclogist at UCLA have said because this is so rare and they know it is aggressive, they want to do more treatment. The local doctor said he has only seen it twice in 13 years of practice. The neuro-onclogist said that of the hundreds of people that they see a year, only about 5% are this type. So they both wanted Dwayne seen by a lymphoma specialist. This will be on Tuesday morning at UCLA.

Thanks for all the prayers, encouragement and other practical things you have done for us over the past four months!

Progress

Glad we have friends and siblings in our life like this!

The past two weeks have been quiet, and at times frustrating. We have been trying to get referrals to the UCLA lymphoma specialist. This has taken longer than it should have due to some changes with our health care group and our primary care doctor out on vacation for almost three weeks. The referral finally went through on Friday and I got the right person today, and he has an appointment on August 9th! The next MRI is going to be done on the 8th. They also want to see what the most recent MRI says. So, those two days are going to be big ones for us. Appreciate your prayers very much.

Thirty Two Years!

Wow! Did we have any idea thirty two years ago, what life had in store for us when we said our vows? I have thought a lot about those words the past week. For better or worse, in sickness and in health....

Who are those kids?

        

Thirtieth anniversary 2009.
 So glad that God gave us our life together.

And a little bit more

We are getting more information, just a little bit at a time. The visit to Dr. Cheng, Dwayne's oncologist in the area, was positive yesterday. It had been five weeks since Dwayne saw him. He was pleased with his balance, strength and speech. He also had an explanation for the swelling that Dwayne had last week. It is caused by the steroid that he has been on since March. He is tapering it off and will be completely done with it in a week. The next MRI will be done the week of August 8th. Dr. Cheng feels it is best to wait until six weeks after the radiation. He also will not decide the next step until Dwayne is seen by the lymphoma specialist at UCLA. We are waiting for the approval from the insurance for that.

Today we did get a call that there is an opening in the day program in the rehab unit beginning August 1st. The rehab doctor feels that he has progressed enough to go there instead of having the therapists come to the house. There is more the physical therapist can do with him there. He will go three mornings a week for three hours each time. 

Little bit more....

Dwayne went in for a nurse visit to flush the porta-cath in his chest this morning. This is not our primary doctor's regular nurse. I have only spoken to her on the phone and she has always been so much help. She was able to track down the CT report for us and followed up on the rehab request for us too. Love nurses!
The jest of the report was "no significant pathology is noted". But no explanation either. I am going to have a nurse friend look at some of the terms because I'm not sure what they mean. I did find out that the radiologist, the doctor who ordered the CT, actually got the report on the evening of the day it was done. Not sure why we did not get a call.

He has an appointment with his oncologist on Monday morning. So, maybe we tie a few loose ends up then. What a week it has been!

Again thanks to all of you for your concern and prayers. We sure appreciate them.

Well, we still have not heard anything on the CT. Kind of frustrating.

But, the visit with the neuro-oncolgist yesterday at UCLA was good. We saw the main doctor and were very impressed with him. He said we will know more after the MRI is done, probably in two to three  weeks. But his feeling is that even if the MRI shows all the lesions are gone, he thinks the best course would be to do follow up chemo. This would be two different drugs from what was originally used. One specifically used for lymphomas. He also is going to request that Dwayne see a lymphoma specialist at UCLA. On Monday, Dwayne will see the local oncologist again.

Thanks again for keeping us in your prayers.

Pray Please!

The past two weeks have been rather routine. That has been wonderful.

Had good visits with Dwayne's sister Kim and her daughter Laura, and then my sister, Kerri was down last week.  Enjoyed the time with them.

Dwayne is still having speech and physical therapy at home. We are waiting on approval to get him into the day program for rehab. He had a visit with the radiologist this morning. She was pleased with strength, speech and balance. But I mentioned to her that I thought an area around his neck looked puffy. She took a look and checked some other things and then said she was ordering a CT. We got it done this afternoon, no phone calls yet. Just praying that it is something simple.

Tomorrow is the day we see the UCLA doctors.

Thank You!

Wow! What a surprise we got the other day. I have a group of girls that I have been sewing with for a couple of years. Over the past two months I have not been able to sew with them and have missed them. On Friday, I was able to spend some time with them, missed you Sophie! These girls, ages 11 and 12 put together the most beautiful quilt. Jill, one of the mom's has been having people write notes on the back. That was so special. Dwayne and I spent a good part of Friday evening reading all of your encouraging words. Thanks for loving us!

Encouragement!

Today was Dwayne's last day of radiation!

He had a check up with the radiologist and she was pleased with his progress. Then we saw the rehab doctor, Dr. Cushing. He has not seen Dwayne since he was released from the rehab unit 3 1/2 weeks ago. Dr. Cushing was very excited to see the progress he's made. He will now put in the paper work for him to start doing the day program in the rehab unit at Mission. This will be three days a week for three hours a day. Not sure how soon this will start.

We will see the UCLA doctor on July 6th. They will decide the next step in the treatment program. Would appreciate prayers for wisdom for the medical team.

Good day all around!

Father's Day

Today was a good day, kind of quiet for the most part. Jared and I did some yard work and planted some new flowers. Hopefully the rabbits won't eat these! They sure are cute, but I would rather they not use my plants for their personal diner! Nathan and his girlfriend (I think I can now call her that) Sara came over for dinner this evening.

Dwayne is doing more physically. The therapist had him walk our cul-de-sac yesterday, and he chose to do it without his cane! It is slow, but there is progress. The last radiation treatment will be on Wednesday! He will also see the rehab doctor that day too. On the 5th of July he will have a two week check up with the radiologist and the 11th will be with the local oncologist. Tomorrow I am hoping to finally connect with the UCLA doctor and get an appointment up there for the first week of July. They will make the next call as far as treatment goes.

Thank you for your continued prayers.

Good Report!

Yesterday Dwayne had two doctors appointments. One with our family doctor who had not seen him since this all started  at the end of March and the other with the oncologist.

Our family doctor was great about listening to what his needs are for now and getting the referrals in place for them. The oncologist last saw Dwayne in the hospital ten days ago. After spending about a half an hour with us and looking at the neurological aspect of things, he ask Dwayne what he thought. Dwayne told him that he feels like he is doing better. The doctor said that he saw an improvement with his speech and balance. That was an encouragement! The plan right now is after radiation finishes, should be June 22nd, he will see the UCLA doctors again. They will make decisions on the next steps. After both appointments, in which Dwayne walked in to only using his cane, we went out for dinner. Was a nice way to end a good afternoon.

Please continue the prayers!

Progerss

Over all it has been a good week. My brother, Tim came down from Burbank for a few days to help out. Sure appreciate him! Dwayne continues with the radiation. He has now had 12 treatments. I think at this point the radiologist is staying with her original plan of 25 treatments. If so, then he is halfway done. We are praying that the radiation completely does away with all the lesions. He is very tired and his hair is coming out by the handfuls. Finding that the lint roller comes in handy!

Thank you again for all your prayers and practical help. Thanks Bob for helping with the transportation to radiation, that has helped so much.

Home!

After 10 days in the rehab unit, Dwayne will come home today! He is more stable and stronger than a couple of weeks ago. His speech seems to be a little better too.  He has now had eight radiation treatments and those will continue for the next four weeks. We are encouraged by the progress.

Thanks again so much for the prayers, encouragement and practical help. We are truely blessed.

Eight Weeks

Today marks eight weeks since we began this adventure. It has been a wild ride at times! We thought we were in a routine for the next two months, until that changed this week. It is interesting that this year the Bible study I was in, we went through the book of James. About two weeks before Dwayne was diagnosed, we studied the passage from James chapter 4, that says in verse 14 "yet you don't know what tomorrow will bring". I tend to be a planner, I like a routine and not real big on changes. There have been many times that passage has come back to me over the past couple of months. But as a friend reminded me this week of Psalm 91, in verses 1-6 tells us that God is our refuge and fortress. It was a good reminder that He is our strength in this, even when it seems way too big to us.

New Direction

The doctor at UCLA agreed that radiation is the direction to go. Once that was decided things moved quickly. On Wednesday afternoon all the prep work was done for radiation, CT mapping, a mask made and some other things. The tech was great about explaining everything and it was interesting to see how they do this. A lot of things have changed since Jared did radiation. We thought it would begin on Thursday, but the doctor wanted it to being on Wednesday. So the techs stayed late and they did his first treatment at 6:30 in the evening!

The decision was made on Wednesday to move him to the rehab floor at the hospital.  He will be getting five to six hours a day of speech, occupational and physical therapy. My concern had been that he was not as steady as he had been and I didn't want him falling. The insurance has the final say on how long he gets to stay, so we are praying that he gets the time he needs. The rehab doctor said the average stay is about a week. The nurses call the rehab unit "boot camp"!

Detour

Well, yesterday took us in a different direction than we thought we were going. In the morning one of the nurses noticed some changes in Dwayne that she had not seen in him a week ago. She brought them to the attention of the doctor. He decided to do an MRI yesterday instead of waiting for three weeks. The MRI showed that the chemo has not been effective is shrinking the lesions. So he did not end up getting the chemo yesterday. The doctor has a call into the doctor at UCLA for another opinion. A radiologist met with us yesterday afternoon. Looking like that is the direction that we will be heading, depending on what the UCLA doctor says. Please keep us in your prayers. We need wisdom and direction

A few bumps along the way

Dwayne was home last week.  Early in the week, I was feeling overwhelmed at times with the largeness of what we are dealing with. Fighting a sinus infection did not help either. God sent encouragement to us as the week went on. The doctor's visit on Thursday was good. He was pleased that Dwayne's blood counts were high, and that other than the extreme fatigue, he is not experiencing any of the other side effects. On Thursday, I took him for a hair cut. Who needs a hair cut while they are on chemo? The gal who cuts my hair knew he could not get up the stairs at her shop, so she had us come to her house and did it there.

Two weeks ago, one of the men that Dwayne works with offered to mow our lawn. I told him that I would appreciate it, since neither Nathan or I do well with the pollen this time of the year.  Friday afternoon, not only Bob comes, but 10 other men, and one of their wives show up! They trimmed the trees, mowed and edged the lawn, mixed 15 bags of steer manure into the flower beds that have been sitting on the side yard for the past two months. The yard looks great. It was such a blessing!

Yesterday, Dwayne went back into the hospital. Round three will be today. Pray that it will do the job it is supposed to do and get rid of all the lesions. New MRI in three weeks.

Small Steps

Dwayne got to come home yesterday afternoon. He is tried but that is to be expected. His speech is a little bit better than it was after the first round. Grateful for that. He is not having to work as hard to find the word he wants, and is more aware when he doesn't have the correct one. That is progress.
Thanks again for the prayers.

Round Two Done!

Dwayne had his second round of chemo yesterday and tolerated it well. There are sure some better anti-nausea drugs then there were 20 years ago! He even ate dinner while he was getting the chemo. He will get fluids and the other drug to counter the chemo for the next few days.

I was pleasantly surprised to find that Nathan had made a very good dinner when I got home. Someone taught that boy well.....

Thanks for the prayers, hopefully he will not be as tired as he has been over the next two weeks. That is the only side effect that he is experiencing.

Grateful for the little things!

This has been a good week overall. We spent Easter afternoon with family and that was wonderful. Good company, good food. The speech therapist was very encouraging on Friday. She can see improvement in his expression and word finding. I was seeing it, but nice that she does too. Yesterday, we went out for the afternoon with friends. Saw a movie, and had Chinese food for dinner. Can't beat that! Thanks Tim and Alice for encouraging us to go.

The admitting nurse called awhile ago.  Dwayne will go in late this afternoon and get a porta-cath inserted in his chest tomorrow morning. This will make it easier on his veins for the chemo, fluids and blood draws.  Second round of  chemo tomorrow.

One Month

Dwayne got through his first round of chemo and did pretty well. He has been tired. We have now been in our new 'normal' for a month now. We have been so blessed by people who have brought meals, sent notes, helped in very practical ways.

Lightening isn't supposed to strike twice in the same place!

This is being written from the oncology floor at our local hospital. For some of you this will be old news, others it will get you current as to why we are here. A few weeks ago, Dwayne was having some health issues that caused our family doctor to refer him to a number of other doctors. A neurologist ordered an MRI on March 26th. We found ourselves in the ICU at our local hospital two hours later.  A biopsy reveled a rare form of lymphoma.  One of my first thoughts when a neurosurgeon came in to see him was "can this be happening again?" For those of you who have known us a long time, know we dealt with cancer with our younger son, 23 years ago.  The past two weeks have been filled with numerous doctors appointments, tests and a second opinion from a neuro-oncologist at UCLA. We have been blessed with excellent care.
Today began his first round of chemotherapy.
I hope this will be a way to keep up with what is going on in our lives.