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

 

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

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.

Dont-lose-hope.-You-never-know-what-tomorrow-will-bring

 

Tuesday, March 25, 2014

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Kevin spent the day on the 4th floor where he could be monitored more similar to the ICU monitoring.  He had a great day today.  He was able to be up and walk around the hall several laps twice today. 

Chemotherapy was short today and so far has only made him feel wiped out and tired but otherwise not too bad.

The evening found us moved again. This time to the 6th floor.  Back to where we started but in the room next door.  It was kind of comforting to see familiar faces up here and the brightness on this floor is so much more comforting then the 4th floor or ICU.

There is light at the end of the tunnel that is this hospital visit.  His oxygen needs seem to be stabilized and if we can see a little more strength and progress we should be able to go home soon.

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Looking forward to watching the sun set on our time at CMH.  Continue reading