May 2015 updates

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A long day in LA….but these LA visits are now fewer and further in between and I am so thankful!

Kevin saw his hematologist and oncologist today following up on his current status and his recovery.  It was really all great news.  His tumor markers (measured with blood tests) were all within normal range.  His blood counts are still recovering from transplant, but continuing to trend in the right direction.  He had his chest scanned…but there was some mistake on the orders and his abdomen and pelvis were not scanned today.  But his chest scan showed his lung tumors to have continued to decrease in number and size since his last scan earlier this year.  AWESOME news!

The only negative news has to do with an injection he has to take daily because of his elevated clot risk.  He hates it….and basically was told it is the only/best option for him right now and he may have to continue for 6 months. He is not happy.   Pray for him to have peace with this necessary evil so he doesn’t dread that time every day.

He was given the all clear to do as much as he physically can do and just continue to regain his strength and stimina.  He will get the other scan in a few weeks and then see the surgeon…..followed by a  recheck of all things in August.  

Life is getting back to ‘normal’. It is a new normal and we are still figuring it out….but God has been good and we are embracing figuring it out.  I started a new job last week and Kevin is working modified duty right now.  So life is starting to be filled with less doctor appointments and more regular daily activities. 

And he gets to enjoy life again.

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Thank you all for your amazing support through this journey….I pray for your health to be protected and full of God’s blessings!

~Lisa

One Year “Anniversary”

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It’s not an anniversary I would like to celebrate.  The anniversary of the beginning of this nightmare of a year.  The first day Kevin’s cancer was confirmed.  The day we ‘owned’ the dreaded words, testicular cancer.

I can not believe it’s been a year.  In some ways, it seems like longer.  I have trouble remembering what life was like before this storm.  In other ways, it seems like only yesterday.  Time is weird like that. This year has been a test for our family.  But, by the grace of God, we have survived it.  And dare I say even thrived a bit.  There have been 100 days as an inpatient in the hospital, countless doctors appointments, thousands of blood draws, 9 rounds of chemotherapy, 3 stem cell transplants, 2 surgeries and a pulmonary embolism ( not necessarily in that order!)

My children have spent 100 days this year without their parents at home.  I have been by Kevin’s side almost every single day.  Almost 30% of the year.  I can’t imagine what that was like for them.  But they have been amazing.  Staying focused on school, keeping their grades up, excelling in all they do despite the major disruption to their lives.

Kevin is recovering well.  He is a pillar of strength.  Each step in the treatment and recovery process he does with the end goal of getting back to work.  Getting back to his other family.  The family that has supported us and loved us through this ordeal.  We are forever grateful and no words can accurately express how much this has meant to us.  To each of you reading this, your prayers, visits, trips to costco, good thoughts, gifts of service, meals, rides for kids, building bicycles, and more…..we are forever thankful.  THANK YOU!  We never would have made it through this without you.

This past week, Kevin has had the privilege of getting back in his uniform.  It was great to see him up and moving and exciting to hear his passion as he had the privilege of providing support instead of the receiving it.

At this moment in time, Kevin is done with active treatment. He is recovering from the trauma his body has been through this past year.  He will be watched closely and monitored to ensure that the cancer is dead.  The large tumor and involved lymph nodes have all been removed and after the last chemo treatments all the tissue was necrotic (dead).  He still has ‘stuff’ in his lungs.  It is likely that it is ‘dead stuff’ ….aka scar tissue and that is our hope.  Kevin will have scans and blood work next checked at the end of April.  Until then, he is working on getting stronger and excited to be working modified duty and be connected again with his fire family.

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Our motto has been Keep Calm and Kick Cancer’s Ass….Kevin has done this all year!

We believe that God does answer prayers.  We don’t understand why he allows us to go through the hard things.  But we do know that he is faithful.

Matthew 21:22 And whatever you ask in prayer, you will receive, if you have faith.”

With Love and Gratitude,

~Lisa

 

Praise the Lord – Good News

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It’s like a breath of fresh air.  Literally, like I can breath a little deeper and see a little clearer.  Lately, I have to admit I’ve been starting to suffocate.  Gasping for air.  Trusting….but even through the trust knowing I can’t know what’s next and feeling a little helpless.  This journey is all a bit overwhelming.

But today.  Today was a good day. Praise the Lord.

We saw Kevin’s surgeon today for a follow up.  He again told us he was so happy with how the surgery went.  He admitted he (the dr.) needed pain killers for several days after the tedious 12 hour surgery.  But it went very well.

Then he told us the pathology of the tumor/masses/lymph nodes that were removed.   And here is the best news we’ve heard in close to one year.  Everything came back as fibrosis, or DEAD/SCAR TISSUE.  There was no active cancer in any of the retroperitoneal area.  Did you hear that?  It was all dead.  These areas had a complete response to the chemotherapy.  I do believe in miracles.  At the beginning of this journey people would ask me if there was anything they could do, and my standard response was give me a miracle.  So I know lots of you prayed that for me.  THANK YOU.

There are still some questions, and we’re not completely out of the woods yet.  But definitely feeling a huge victory today.  There is still lots of ‘stuff’ in his lungs.  Doctor said there is 70% chance that what is in the lungs will be same as what was already removed.  So basically we watch and monitor his blood and his chest and hope things either shrink or stay the same.

In the meantime, Kevin is on the road to recovery.  He gets a little stronger everyday.  Due to the removal of the lymph nodes and the section of the inferior vena cava, he continues to have a ton of swelling and fluid accumulation in his legs and his abdomen.  This is all to be expected after this type of surgery (though we didn’t know that until now!) and it should continue to improve some each day.  He continues to experience quite a lot of pain, but is getting stronger and stronger each day.   The road to recovery is still long, but we can see the light.  And it’s looking beautiful!

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Christmas is coming

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It is beginning to look a lot like Christmas.  Well,  Courtney doesn’t think so since our weather is still warm and beautiful and we don’t have snow, or a need for heavy sweaters, beanies or gloves….but seeing all the Christmas lights and the few decorations we’ve had the time to put up still makes me happy.

In case you haven’t seen, Kevin was released from USC Norris Cancer Center on Saturday (12/6). 10419438_10204643074538972_9069532778481568346_n

It was a fantastic day!  Kevin has been an inpatient in a hospital for 95 days this year.  Thankfully, not all of those days were in a row….but I can tell you that this many days in a hospital certainly takes it’s toll on a person, both physically and mentally.

This last stay was over Thanksgiving, which was really challenging for Kevin to be in the hospital on this holiday, but we got to break up the day a bit.  The kids were able to visit a few times throughout the day, we were so blessed to be taken in by the Macho family.  They have allowed me a place to stay, do laundry, shower and just relax a bit outside of the hospital ever since Kevin has been receiving care at USC.  They were so gracious and took the kids and I in for the thanksgiving holiday and included us in their fun game of flag football and the meal time festivities.  The kids and I came to their house on Wednesday and were able to be back and forth to the hospital through the weekend.

You might be wondering, what next?

Over the course of the next few weeks, Kevin will be having some imaging repeated (CT scan and MRI) to see what everything looks like.  We are pretty confident that Kevin will need to have a surgery called RPLND.  This will remove the lymph nodes and the remaining mass in the retroperitoneal cavity.  Kevin’s will have imaging done soon and then follow up appointment with the surgeon is January 20th, so he will have some time to recover from this high dose chemotherapy regimen before he has surgery.  There may be other procedures, or surgeries that will take place after the RPLND before he could be cleared to go back to work, but so far, we only know that RPLND surgery will be next if necessary.

Kevin and I are working on his physical recovery by going for a walk every day.  We are trying to increase the distance a little bit every time and add some body weight exercises to the mix to strengthen his body as much as possible. Be is determined to get back to work as soon as possible!

We know that your prayers are working as we feel peace in this storm. We appreciate all of your support and are looking forward to the time when this is all behind us.

Wishing you a very Merry Christmas and a blessed New Year!

Christmas Bible Verses Ktldo

Misery Days are here

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Today is called Day +8.   The first day of chemo was Day -4.  The stem cell re-infusion was Day 0. So all total he has been in the hospital for 13 days.  He is right in the middle of the misery days.  His blood counts are bottomed out.  He has had fever for 3 days. He has no energy and very little appetite.  (Actually this morning and last night he ate something more than applesauce for the first time in days!)

Now we watch and wait for his counts to come back up.  Yesterday was the 3rd day at the rock bottom.  His white blood count has been 0.0 for 3 days, but today, it went up to 0.4.  So I think that might be a sign that his immune system is preparing to come back to life!  He has received three blood and platelet transfusions so far.  He is keeping a pretty positive mental outlook, but sometimes you just are in the misery.

He hasn’t seen the kids since October 8th.  Today, they will be returning from a mission’s trip with our church and will get to come in for a visit on their way home. That will be the highlight of the day!

Thank you all for your continued support!

 

 

High Dose Chemo round 1

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Feeling good

Feeling good….out for some laps

I know some of you were wondering how things are going.  Kevin has completed receiving all of the high dose chemo and his stem cells have been reintroduced for round 1 of 3.  We are told to expect the worst point to be 7- 12 days after he receives his stem cells back.  The doctor called them the misery days.  For now, he feels pretty good and we walk a lot of laps each day around the floor.  18 laps equals one mile.

He has been doing very well so far.  The first 24 hours was a little rough, but I think that may have been attributed to the anxiety from reading all the possible side effects of the chemo.  We have had this information before, but Kevin hadn’t really been too interesting in reading it.  Right before they started the chemo they brought in a paper with the potential side effects listed.  The one that was the most concerning was possible vision loss.  Kevin told the nurse he read the side effects and changed his mind.  He wasn’t gonna do it.  The nurse was really taken aback.  It was Kevin’s typical humor.  I think.  I mentioned it would not do him any good to see if he wasn’t alive.  So he agreed to go ahead with the treatment.

Nurses are the best!

Nurses are the best!

Other than that, Kevin has been feeling pretty relatively well.  He has been having a lot of headaches, but other feared side effects so far have never popped up due to all the preventative medications they give to help avoid all the possible side effects.

Today’s stem cell reintroduction went really smoothly and he would have slept through the whole thing had his nurse not woke him up to eat some oranges to help counteract some of the potential negative experiences of the transplant.  The only thing he noticed was a slight weird taste in his mouth, but he enjoyed eating the oranges and that seemed to mask the taste.  As soon as the stem cells were infused, he went right back to sleep.  (A large dose of benedryl was one of the pre-meds!)

So far, he feels so much better than he expected.  We await ‘the misery days’.  In the meantime, thanks for all your prayers and support while Kevin continue’s to kick cancer’s ass!

Life saving stuff

   Life saving stuff  

Watching the cells return

Watching the cells return

 

Here we go!

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Medical Update

We’ve had a busy past few weeks and the road is quickly getting more traveled.   All pre-testing is done.  All boxes have been checked and on Saturday, Kevin will be starting chemotherapy.    It took a little longer than we had anticipated to get all the pre-requisite work done, but we have finally completed everything and are good to go.

Saturday morning we check in.  The time is TBD based on the availability of a bed.    We will be calling in the morning to be advised what time we should arrive.  Kevin will be inpatient at USC’s Norris Cancer Hospital for 5 days.  He should be released on Wednesday if all goes as planned.   Then he will have through the weekend at home to ‘recover’ and prepare his body for stem-cell harvesting.  This will be done by taking neupogen injections twice a day while at home to stimulate the bone marrow to produce extra stem cells and to push them out into the blood stream so they can be collected more easily.  The following week, he will be back at USC for 2 – 5 days of all day outpatient stem cell harvesting.  Basically he hangs out for the day and lets his blood be filtered through a machine and put back into his body less some of those floating stem cells.  Once collected, they will be frozen and saved for later when he will be receiving 3 rounds of high dose chemotherapy and between each of these rounds, his own stem cells will be reintroduced back to his body to rescue his immune system from the chemotherapy.

Kevin is very anxious to get this process started.  The sooner he kicks cancer’s ass, the sooner we can go back to ‘normal’ life.

The details are a little tedious and of course there is nothing…I mean nothing that is set in stone (expect his admission on Saturday!)   So….I will do my best to keep you posted.  But know that for the next 12-15 weeks, Kevin will be mostly at USC with a few days of reprieve at home.    The plan is to hit the cancer hard.  Wait for his immune system to recover just enough to be ‘safe’ and then hit it again.

just for fun

Adventures in LA

So, in the past 2 weeks, we have had 3 trips to USC.  Each trip had a few fun story moments.  We like to share some of those to keep things interesting and a little less boring.

The first appointment was a consultation with the hematologist/Bone Marrow Transplant Specialist.  We actually met her the prior week, but had to have an official consultation to get the correct box checked off to move forward.  So we arrived for our 11am appointment around 10:30, got situated in the waiting room around 10:45am.  Now the previous week, we waited about 3 hours to have our names called and 4 hours until we actually saw the doctor.  So we came prepared this time.  We brought some cards and our backgammon set.  We get out the backgammon set, set the pieces, roll the dice….and they call Kevin’s name.  What?  Early?  NO COMPLAINTS!  It was great.  We were seen early, the doctor was fantastic, very informational, and then we were out of there.  My favorite day in LA.

Later that week we had to go back.  Kevin had a battery of tests that need to be done prior to stem cell transplant being approved.  So he was scheduled to do some of those tests on Friday and then the last test they couldn’t get him in until this coming Friday (the 12th).   We got there about an hour early, were met by one of the schedulers at the reception lobby about 5 minutes later, and she escorted us through all the tests Kevin needed.  We moved from one thing to another with some short wait times in between.  At 10:30am we were just finishing up….when our scheduler came back to meet me while I waited for Kevin to be done with a test.  She said hey….I was able to change the test for next Friday – to today at 2:30pm.   So this was really very cool.  Now we had a few hours to kill before the next test.  We were getting a little hungry, so Kevin finally got his Roscoe’s Chicken and Waffles again.

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In case you don’t know……wherever we go, Kevin is always on the lookout for fire apparatus.   This is an obsession that has not waned in the least since he became a firefighter himself.  He just loves to photograph other equipment. I was warned in the early days of dating about this from his Grandmother!  She told me about an adventure he took her on.   I was even dragged into fire stations on MY HONEYMOON!

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So 16 years later, it’s pretty much a fact of life.  (you take the good, you take the bad….right?)

He was excited to see this:

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and this:

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but then….on our way back to the hospital for the last appointment…..he saw this:

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It was just a few blocks from the hospital.  We saw the smoke as we were approaching our turn.  Instead of a right…we went left, and got to the bush fire just before the first responders arrived.  It was quickly put out, but needless to say…this was Kevin’s favorite trip to USC so far!

We had one more adventurous day this week.  It was pretty much a comedy of errors.  Appointments not properly scheduled, lab work not coming up in the system.  But, the people that were helping us were so kind and apologetic that even though we were delayed by several hours, it wasn’t so bad and we were just happy to get everything done.

So originally we were scheduled to have that last pre-test on Friday the 12th and Kevin was really thrilled about that since the SBFD does their annual charity golf tournament on that day this year and he was hoping to go to that.  If he wasn’t in treatment.  Since the pre-test was that day, he couldn’t be in treatment and the test was scheduled for early enough that he could have done both. But somehow they switched that appointment to earlier and still decided to wait to start the chemo until Saturday so he could enjoy this yearly highlight prior to turning himself in for 3 months of brutal attack on his body.    So tomorrow will be a special and fun day with his fire family and Saturday…..the battle will rage on.  Kevin is prepared to kick cancer’s ass!

Ephesians 6:10-18 (NIV)

10 Finally, be strong in the Lord and in his mighty power. 11 Put on the full armor of God,so that you can take your stand against the devil’s schemes. 12 For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms.13 Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand. 14 Stand firm then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place, 15 and with your feet fitted with the readiness that comes from the gospel of peace. 16 In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one. 17 Take the helmet of salvationand the sword of the Spirit, which is the word of God.

18 And pray in the Spirit on all occasions with all kinds of prayers and requests. With this in mind, be alert and always keep on praying for all the Lord’s people

First step on a new path

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Yesterday we had our appointment at USC with Dr. Quinn.  This was the first step on the new path of treatment with doctors who are specialists in testicular cancer.   We felt so comfortable talking to him and he was confident that Kevin will have a full recovery.  He agreed that high dose chemotherapy with stem cell rescue is indeed the next course of action.  They do it a little differently there so the protocol is to do ‘triple tandem’ which means instead of two rounds, they do three.  It sounds like the ‘high dose chemotherapy’ may be a little less gnarly each time, so the recovery from one round to the next is quicker, but there are three rounds instead of just two.    Each round would require some hospitalization, with a minimum of 8 days, and up to as long as it takes to get the immune system back up and running well.

The treatment will start with 4 days of regular chemotherapy (inpatient) followed by preparation to get the stem cells harvested and then 3-5 days of outpatient stem cell harvesting.  This will be followed by the triple tandem rounds of high dose chemotherapy with stem cell rescue.

When will it start?  Well, the doctor was contacting the insurance to get authorization for the treatment plan (while we were in the room with him)  and we will get started as soon as the authorization comes through.  They like to start the 4 days of chemo on Thursdays, so it is possible if everyone cooperates that Kevin will be checking in to his new hospital room next Thursday, September 4th.  This is not set in stone and I will update later as we know more for sure.

We left this appointment feeling confident that we had  a doctor who is now leading Kevin’s care that is comfortable with this position.  Ready to take each step as they come and rid his body of cancer.

Ups and Downs

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To start with…..I have to correct myself from the last update.  I stated that the further away from chemo, the higher the chances for the cancer to grow.  I actually believe that this still may be true, however according to Dr. Einhorn, Kevin’s tumor markers were never at a point in which he was eligible yet for surgery.  So with the tumor markers moving down, but not yet plateaued or to normal, they could not yet determine if the first series of chemotherapy actually had the cancer under control.  So even though we felt like things were slow based on our battle with insurance, in reality, he wasn’t yet eligible for surgery.

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This week has been full of emotion.  Ups and downs.  Though things haven’t yet been finalized with Kevin’s employer, the independent medical evaluater’s report came in and according to him, the causation of his cancer is occupational.  This is what we were hoping for and changes the picture for many things, including his options for doctors for future treatment (once his employer accepts this finding).

So Monday evening….we celebrated!

We were looking forward to seeing his tumor marker numbers on Tuesday since the ‘goal’ for HCG was to be in the single digits…and the prior week he was at 11.3.  We thought this might be the week.  At least it could get to 9, right?

Unfortunately, however, the tide turned.  Instead of another celebration…we got a punch in the gut.  HCG = 19.  Do you know how many times, I logged out and back in to double check?  How many times I went back to look at the prior weeks progressions just to be sure I was seeing what I was seeing?

HCG = 26…..20.7…..17……11.3…..19  I believe I said a bad word.  It might have started with F.

I saw this in the parking lot alone in the car with one kid, waiting for the other two to do a return at a store.

That evening a birthday celebration was planned for Kevin’s youngest brother, Matt.  So, I decided to sit on this information and not share it with Kevin because I wanted him to enjoy the family and the celebration.  Nothing would change if he didn’t find out until the morning.  Plus, he usually doesn’t ever ask me.  He doesn’t look up the numbers and doesn’t ask.  He diligently goes each Monday to have the blood drawn, and then I check (obsessively) until I see the report come in usually on Tuesday.  He NEVER asks.

This time, he asked.  At dinner. Seriously?  What could I say? Did the numbers come in?  Yes.  Did they go down?  No.  Did they go up? Yes.  Which ones?  All of them.  Oh. Shit.

So I think I’ve mentioned before  – there are 3 numbers that they monitor weekly.  HCG is his tumor marker that was out of this universe, so that is the one that we watch the closest.  But the other two are also indicative of cancer activity.  Currently the other markers (AFP & LDH) are still in the normal range.  But they both were elevated from the previous readings, and both of them have been in a downward trend for weeks.  This is the first up.  So AFP from 3.6 to 6.3 and LDH from 146 to 174.

What does all of this mean?

Well, it means that more chemotherapy is in Kevin’s future.  It means the surgery we thought would be the next step, will not be happening now.  Over the course of the next few weeks there will be repeat marker levels each week, as well as repeats of the imaging early next week and then a new plan will be put in place.  We have been prepared for the next steps to include High Dose chemotherapy with Stem Cell Rescue.  I kind of outlined this in a previous post if you want more information.  I will keep you posted as we know more.

We continue to raise our hands asking to get off this ride….but the ride operator must have taken his break.

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Yesterday,  Kevin and I celebrated our 16th wedding anniversary.  You still make me feel complete.  And I am so God Gave Me You!    Happy Anniversary to the love of my life, my best friend, and my partner in all things.

 

 

 

Denied….but not defeated

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Got the phone call today from Kaiser’s expedited review.

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This was not what we were hoping to hear.

I was able to ask about an appeals process.  So I will be getting the information on that tomorrow.  And we will give the appeals process a shot.

In the meantime, there is another situation I haven’t talked about before on the blog.  Kevin is a firefighter, and many types of cancers are actually considered job related diseases and as such, worker’s compensation eligible.  Testicular cancer is on this list of presumptive on the job cancers.  Of course we have filed all of the correct paperwork for this process and seen an independent medical evaluater and are currently in the waiting for an answer period.  The independent doctor has not yet submitted his write up to the City of Santa Barbara, and once he does, they will have a few weeks to accept his recommendation and make a decision.  We are confident and believe this will be a worker’s compensation case, and when it does, that would open the doors to see doctors that are outside of Kaiser’s network.

The independent medical evaluater has up  to 6 weeks to complete his evaluation.  We have been told that once the city receives the word from the doctor, they have 2 weeks to respond.  So, we have been hoping that Kaiser would give us a yes so that we could keep moving forward in a more timely manner.  But in the meantime, we are hoping that maybe things can move along with this process a little more quickly.

Unfortunately, we don’t have an unlimited amount of time to wait.  The further away from chemotherapy Kevin gets, the higher the likelihood that the cancer will begin to duplicate/grow again.   If that were to happen, then he would not be eligible for surgery any more and the next course of action is called salvage chemotherapy – or the high dose chemotherapy with stem cell rescue.  I have mentioned this procedure in a previous post.  This is not a pleasant option, and it may be a step that would be unnecessary if the surgery is done first.

So, here is the game plan as of tonight.   We will begin the appeals process of this denial for treatment.  We will call the Kaiser surgeon to find out what the next steps would be to be able to get a date scheduled with him.  We anticipate there will be a few appointments and some waiting time for this as well.  In the meantime, we will be hopeful that we get an answer from the city that will allow Kevin to seek treatment from the best doctor in a timely manner, or that the appeals process is expedited and we receive a positive response from that avenue.  But we have to be moving forward and so we will do what we need to schedule surgery with the Kaiser surgeon and continue to hope that we will get some yes answer from the appeals process or from the City of Santa Barbara.

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