Hope

As is usual, it has taken me several attempts to write this post.  I write, reconsider, edit, ponder, and finally post. In the past that has been due to trying to decide how much information to put out-getting the main points across clearly and pointedly with minimal emotion to cloud the message. But now, there is no information to be concise about, no medical terminology to explain. It is all emotion.  The facts are easy, Jack is doing great in school and is learning to read, I am working part-time, getting ready to go back to school in January. The day to day tasks still go on, as if nothing has changed.  The difficult, if not physically painful part, is opening yourself up and sharing the emotion. This is an area that I am not comfortable with, and therefore makes it difficult to blog. Much more so than I expected.

All the business of Dan's passing has been completed.  His estate has been settled, transactions that were in motion prior to his death have been finished, services to honor him have been held. During that time I had tasks to do-the logic part of my brain was still fully engaged allowing the emotional part of my brain to lay in wait. Now that there are no more items on the checklist I feel a bit lost. Everything moving forward is on my own, a position prior to two years ago I never expected. The uncertainty of a new life, in combination with a brain which is suddenly on emotional overdrive, make for a roller coaster of a ride!  Thankfully, I have made contact with a wonderful grief counselor who is helping me to process, not just the last few months, but the last couple of years.

The emotion is not limited to just me, but also creeps in for Jack on occasion. He is a remarkable kid, so perceptive, and understands death far too well for a 6 year old.  He misses his daddy, and sometimes that comes across as sadness, but sometimes it comes across as a fun memory. We talk about Dan daily, and I am so happy that Jack talks to me about how he's feeling. His teacher and school counselor both remark how well he's doing.  I know tough times could come for him, he's got a lifetime of events and memories Dan can't be there for. But I've got several people in place to help him should/when the need arrives.

Overall, we are doing alright. We still have a lot of firsts ahead of us, and it is hard to say what kind of emotions the holidays will bring up. But logically, I know that the intensity of the sadness will not continue forever. (See, that logic part of my brain is fighting to regain control!) And on some days I get a little glimpse of that. I know that I still have a lot of emotion to work out, ups and downs to get through.  A friend recently wrote me to have HOPE. Hope and faith that God has a plan for Jack and I and that good times are ahead for us. I believe in hope.

Since I am not sure when my next post will be, here is to wishing all of you a Happy, Healthy Holiday Season. May the Lord Bless You!


Jen

1 Month

Today was 1 month since Dan's passing. I don't know that it needed to be a milestone, but I made it one. It was constantly in the back of my mind this week, anticipating what today would feel like. Leading up to this day, I've worked to bring things back to a "normal" state for Jack. He's back in school, enjoying first grade, and playing soccer. We are spending time with family and friends and enjoying the last few weeks of summer like weather. I have returned to work and things are moving forward. I am trying hard to stay present and not get lost in the swirl of emotions that threaten to swallow me up. But today I got lost in it. I was sad, and struggling, and because it wasn't a great day for me, it wasn't a great day for Jack. It's been discussed many times how wrong it seems that life just carries on when someone dies, that it feels like we should stop the world and grieve as some type of honor to them. And I have fully agreed with that idea, until today. Today I let my world stop and grieved and it didn't feel like an honor to Dan at all. To honor Dan is to move forward, to enjoy our lives, and remember all the wonderful ways he had been, and is, a part of our everyday. That doesn't mean that it doesn't hurt sometimes, or that we don't think about how much we miss him and wish he could be here. It just means that we work through that grief and keep living through everyday. Stopping and getting stuck in the sadness and inequity of losing Dan is not good for me, nor is it good for Jack. But without today, I don't know if I would really understand this. This is not an easy journey, there will be ups and downs, and very well may be another moment like today. And that's okay. Because tomorrow is another day and all I can do is take it one step at a time. I have a lot to be thankful for, and I don't want to miss out on my life with my amazing son, so I keep moving forward.

Moving Forward

I have been contemplating what to do with this blog now that Dan has passed. It always seems so abrupt when the last post is someones death, because as we all know, the journey doesn't end there. While Dan is no longer physically on this earth, his spirit and memories continue to live on in all of us. And I believe that we will continue to see Dan's influence interlaced through the remainder of our lives.   The title of our blog is Our Life….Interrupted, and it is still interrupted. Selfishly, as part of my own healing, I am going to keep this blog going for at least the next year. I can't say how often I will post, but I feel it's important to record this new interruption.  Please feel free to continue to follow along in the journey with us.

For those of you who were not able to attend, Dan had a beautiful service last Friday.  I so appreciate everyone who attended, and apologize if I was not able to visit with you.  It was wonderful to see that Dan was so loved and well thought of.  Thank you also to all those who sent flowers, and made donations to Young Life and the Boise Rescue Mission in his honor.  For those in Minnesota, a service is still in the works, I am just awaiting the final details.  

Many blessings to you all,

Jen

In Memory of Dan

When I was finalizing the schedule for Dan's funeral service on Friday I considered, for a brief moment, speaking at the service.  I quickly came to my senses in that I will be much too emotional to speak in front of a group, and that the message of my love for my husband would be lost.  So it is here that I give my eulogy to the amazing man I was blessed to call my husband and best friend.

Dan and I met on match.com; it has been fodder for many years amongst he and I. After speaking for a couple of weeks we realized that he was a regular member of the downtown YMCA, where I also worked. We likely had crossed paths before, but in the hustle of getting in and out, hadn't stopped to notice.  I always believed we were destined to meet.  Dan won me over with his kind spirit, infectious laugh, love for life, and the candy that he brought to me before each date…better than flowers!  Ironically, it was a cancer scare with me that moved along our wedding plans. We realized that life could be short and what was the point of dragging out a long engagement?

The next few years were spent exploring…exploring by travel, exploring in melding two lives together, and exploring our faith.  While I had always believed in God, I was not a student of the bible.  Dan very much was. I was often in awe of the scripture he could recite or the passages he could reference off the top of his head. He loved the lord, and while he wasn't one to push or preach, he was always happy to share with someone interested. This was where I struggled.  When Dan and I first married, I couldn't pray out loud with him.  Even if no one else was in the room. I was self conscious.  Dan was gentle and encouraging and over time praying together became a source of centering and support. His love for the Lord was demonstrated everyday.

Our life together was filled with adventure and fun.  Dan was always on the move, wanting to share his love of all things outdoors.  Once I was properly outfitted with all the correct gear, I grudgingly admitted that there could be joy and entertainment found in all four seasons. No adventure was bigger or more rewarding than becoming parents.  The love and pride that radiated off Dan from the moment that Jack entered this world was unmatched, even by myself. For those of you who don't know-Jack was a horrible sleeper for about the first two years of his life.  Dan would put him in the Baby Bjorn, wrap him in blankets and spend an endless amount of time walking around our neighborhood, all the while talking to him. As Jack grew, the experiences grew….swimming in the river, fishing, skiing, and even white water rafting.  But Dan enjoyed the everyday things just as much.  There was no hesitation in running through the sprinkler, or searching for bugs in the garden. Bath and story times were moments to be cherished.  Never a day went by without telling Jack how proud he was of him.

When we received Dan's cancer diagnosis it was like a gut punch. How does this happen to a healthy 45 year old man? To add insult to injury, Dan faced the arduous task of having to relearn to walk as a side effect of his tumor surgery. Despite all the treatments, therapy sessions, and doctor's appointments, Dan never stopped fighting.  His determination to live and continue to be a part of our world is beyond what anyone would have expected. What could have broken him, us, or our family, was handled with such grace and determination that only God himself could have bestowed.  We traveled, rafted, entertained friends and family, and ate more dessert than is probably healthy.  But most importantly, over the last 21 months, he lived.  And we cherished every moment of it.

I feel so incredibly blessed to have spent the last 10 years with Dan. I know that I am forever changed by him, and I couldn't be more grateful. His love for me was unconditional and in this day that is all too rare of an occurrence. The loss of Dan is profound, sometimes suffocating.  But I know, without question, that I will see him again someday in heaven. Like Dan, Jack has a very strong faith in God and we've had many conversations this week about daddy being with Jesus. He is certain that daddy is now an angel and I think he is probably right.  And there is comfort, in knowing that Dan is watching over all of us….smiling that big grin with the dimples and basking in the light of the Lord.


For he will command his angels concerning you to guard you in all your ways;
      Psalm 91:11

Funeral Service

Dan's funeral service will be held Friday, August 22 at 2pm at the Vineryard Boise church.  The Vineyard is located at 4950 N. Bradley, off Chinden/50th Street.  A reception will immediately follow at the church.  Dan's burial will be private, for family only.  Funeral arrangements are being handled by Accent Funeral Home in Meridian.  I have added a link to their website below.

In lieu of flowers, you may donate to Young Life Southwest Idaho (an organization that Dan spent many years volunteering with and supporting) or the Boise Rescue Mission (Dan believed in their mission and strongly supported).  There are links to both organizations through the funeral home's website. If you do feel inclined to send flowers and are looking for a florist, I have added the website of the florist handling the service flowers.

I am blessed that Dan and I had the time to prepare for this day, and were able to make all of his funeral and burial arrangements prior to his passing.  It has taken a load off of me during this incredibly difficult time.  Thank you all for your messages of love and support for Jack and I.


Accent Funeral Home

Hillcrest Floral

Young Life

Boise Rescue Mission


For those of you in Minnesota-Dan's mom, Freddie, will be planning a memorial service in Brainerd for sometime in the next couple of weeks.  The details haven't been worked out yet, but once they are I will let you know.  Jack and I are planning on attending.  I'll keep you posted.

An End To A Journey

Dan passed away at 5:20am this morning.  It was quick and peaceful and I was blessed to have those last precious moments with him.  I will be updating the blog in the next few days once we have finalized funeral arrangements.

Thank you all for your love and prayers-

Jen

Just a quick update.  We had to start Dan on morphine last night as he was uncomfortable and agitated. Once that took effect has was able to sleep more soundly. This afternoon the nurse came in to evaluate Dan and assist me with some care items. His oxygen levels dropped significantly over the past 24 hours and his heart rate has increased, which is normal in this situation. Her best estimate for his passing is in the next 24-48 hours. I'll keep you posted…..

Heartbreaking

As I sit here writing this post, which I have been putting off for much of the day, I am watching over my beautiful husband in a hospital bed who is losing his battle with cancer. Over the past two months the hospice team has repeatedly told us that brain tumors/cancer in younger patients is hard to predict, but that they expected he'd be walking/talking one day and hit a wall the next.  That is exactly what happened.  In the past 3 days Dan has deteriorated from sleeping off and on, but still able to eat and have basic discussions to now bedridden and drifting in and out of consciousness.  Today he has eaten and drank very little. Mentally, he isn't ready to give up the fight but his body is shutting down.  When he wakes up briefly, the conversations are random and sometimes incoherent.  He is no longer able to talk on the phone, respond to email, or text conversations. Our hospice nurse expects by the end of the week that he will be completely unresponsive and that it won't be much beyond that before he passes.

My heart just continues to break- over watching Dan deteriorate, over Jack losing his father, over me losing my best friend.  Even with all the time that we have had to prepare, for which we are so grateful, I cannot fathom my life without him.

Thank you to everyone who has reached out, not only the past several days, but over the last 21 months of our journey.  I appreciate all the prayers and kind words, and while I don't have the energy right now to respond back to everyone, please know that I am grateful.  Dan, Jack, and I are beyond blessed to have such amazing friends and family to see us through this.

Please continue to pray for us and I will keep you updated over the next few days.

Much love,

Jen

Two Months and Counting

As I write this, Dan is resting in the comfy patio chair outside, taking advantage of an unusually mild August day in Boise.  We have passed by the dreaded two month mark, and Dan is still fighting hard.  He is still up and walking, but now with the assistance of a walker.  The stiffness in his muscles and neuropathy in his legs and feet has gotten worse. He is still carefully navigating the stairs, but I don't think we are too far from putting the stair lift back in to use.  This past week we've noticed a decrease in his energy level and the need to nap more.  Right now they are still little cat-naps through the day, with a longer nap after lunch. He is still eating regularly, though not quite as much as before.  Everything just seems to be slowing down a bit, which is what we knew was likely to happen.

With the new changes coming about, it brings us into a new grief period. Dan had been doing so well, bolstered by the increase in steroids. He was able to stay active and engaged and it is all too easy to get comfortable in the scenario, trying not to focus too much on what's ahead.  But the slowing of Dan's body is a daily reminder that our time is limited and will all too quickly come to an end. The past two days Jack has been very focused on the idea that "daddy isn't going to be here very much longer" and I sometimes wonder if he senses more urgency than Dan and I are willing to accept. With Dan's condition, no one can give us a definite time line and we are left to wonder what the timing of the next phase will be. All we can do is take each day as it comes and pray for a peaceful end to Dan's journey when God decides it is time.

Thank you everyone for your love, support, and prayers-

Jen

Everyday Stuff

It has been a month since we received the news. I expected to have more exciting things to post, but the past several weeks have been filed with mostly everyday stuff.  Dan has really been enjoying the summer weather by spending time out on the patio.  We've been taking advantage of Dan's free days by going to lunch, attending Jack's swim team practices and meets, and hitting up the local snow cone shack.  Dan has also had a steady stream of out of town visitors the last couple of weeks.  It has been wonderful to see everyone and have some time together.

Dan is still up and moving around, but now needs the assistance of a cane.  He is noticing more stiffness in his muscles and numbness in his extremities.  We still don't know what the timeline of his decline will look like, but are just so grateful that he is still mobile and we have had this time together.

Thank you all for your love and support. Dan appreciates all the letter, emails, and phone calls.  Hope you all had a safe and happy 4th of July!

Jen

The Beginning of the End

I've been trying to figure out how to begin this post.  When Dan was first diagnosed, the blog was a way to get as much information out to as many people as efficiently as possible.  While it was emotional to tell the story, I had a purpose.  This time it seems as if there is just emotion.  Yes, there is some medical jargon and details to include, but you know the history and followed the journey.  It is with such sadness that I share with you we have begun to prepare for the end of the journey.

As you know from my prior post, things were looking stable and we had been given the okay to go 3 months between scans, putting the next tests in July. It seemed like we could relax, breathe a little, and make some plans for the summer.  After all, if things didn't look great at the end of July, we still may have options, or at the least, more time..right?  Then, the week before Memorial Day, Dan started having reoccurring headaches. He was tired, sleeping more, and I noticed that he was having some minor balance issues. But when you have a brain tumor, the smallest change causes alarm. Dan made an appointment for the following week to check in with his radiation oncologist. During Memorial Day weekend Dan had an episode where he became light headed, which really scared me. I was seeing the same symptoms he had experienced right before his initial diagnosis in 2012.  After a second scare, we called this doctor who ordered an MRI.  The results of the MRI were inconclusive. The tumor showed an increase of inflammation in the brain, with the left hemisphere crossing into the right hemisphere even farther.  There was also what appeared to be a large white ring around the tumor. What the doctor couldn't tell is if the tumor was growing, or if healthy tissue around the tumor had been damaged by the radiation. A second test was ordered, essentially a brain PET scan (it has a specific name, but I can't recall it).  The doctor called the next day to let us know that the PET showed the tumor was active and growing.  He scheduled a follow up appointment for us on Wed, June 4 to discuss what, if any, treatment options we had.  We also had an appointment with the neurosurgeon scheduled for us that same day. In the meantime, Dan was put on a heavy dose of steroids to help the symptoms.

Some of you know that June 4 is our anniversary.  This year, it was our 10 year.  We had planned to travel to Napa Valley to celebrate, but given the news and Dan's issues, decided to cancel the trip with hopes to reschedule later in the summer.  We began the day meeting with the neurosurgeon who told us surgery is not an option. We had known that as the location of the tumor is in a very sensitive and difficult area to reach.  What we didn't expect to hear was that he didn't believe radiating the tumor would be of any use.  It was crushing.  Dan and I both knew that at some point there would be no more that could be done, but we always thought it was farther out.  The analogy that I used with some friends is that we knew we couldn't win the war, but we thought we had a couple more battles ahead of us.  We had several hours between appointments that day and those hours were filled with such tears and pain.  By the time we met with Dan's oncologist, Dr. Smith, we were wrecked.  Dr. Smith confirmed that after two failed tries of radiation, coupled with the fact that there was some hemorrhaging of the tumor on the last try, it wasn't a viable option.  He recommended that we make the most of Dan's time, preserve some quality of life, and allow him to go out with peace and dignity.  When Dan pressed him for an estimate of time left, Dr. Smith said 2 months. I felt like someone sucked all the air out of the room.  He recommended that we prepare for hospice and begin to get things in order.

Our Wedding Day   June 4, 2004

Fast forward to today, a week later, and it still seems unreal.  It feels like are moving in slow motion, but the time around us is speeding by.  The week has been filled with appointments, visits, phone calls, emails, and as much time together as we can.  Dan is transitioning out of the office and to long term disability. I am trying to figure out how to get in a few hours at the office, we've begun the hospice care, and of course there is Jack. The most heartbreaking piece of this is Jack.  No kid deserves to lose a parent. We have talked to him, through the advisement of his counselor, and it will be something he struggles with through out his life. For the immediate, we are keeping his schedule as normal as we can (he started swim team this week) and surrounding him with lots of love. Thankfully, we have an amazing support system of family and friends.

I know there are lots more details that I could give, but this is all I have the energy for right now.  I will continue to blog, more frequently, and keep you all updated.  As of now, Dan is doing well.  His energy and appetite are good. He's noticing a little more numbness in his legs and feet, so his walking is  a little more uneven right now.  But, he's been able to do normal things, like mow the lawn and spend some time in the office.  I do want you all to know that we have done everything possible for Dan. This decision to begin hospice wasn't taken lightly, and multiple doctors were consulted. If we truly believed there was a treatment out there that wouldn't compromise his quality of life, we would do it.  No one knows for certain how much time we have.  We pray everyday for a miracle….it doesn't hurt to ask, right?

Please know that we love and appreciate you all so very much.  We ask that you pray for our family, in whatever manor of prayer you believe in, for whatever speaks to your heart.

More to come soon……..

Jen

Birthday Gift

Today is Dan's birthday, and we are so thankful to be able to celebrate another year with him. On Thursday we met with his medical oncologist and his brain radiation oncologist. This was the first CT scan Dan had since the end of his lung radiation treatment. We are excited to report that the two tumors in Dan's lung are gone! The lung radiation was a success.

Dan also had another brain scan (we've been on a monthly schedule since receiving treatment). The brain tumor hasn't changed-there is no growth and no more bleeding. Considering, the doctor is happy with the results of the test.  Dan's not having any issues and his small, occasional headaches are subsiding. It was agreed that Dan can go back to a 3 month schedule for scans, so his next set will be sometime at the end of July. We are both so happy with the news and couldn't have asked for a better birthday gift!

Thank you all for your prayers and support-we appreciate it so much.

Happy Easter Everyone!

Wishing you and your loved ones are very blessed Easter holiday.

Love,

The Barbeau's

Quick Update

Not a whole lot to report….we've just been waiting for enough time to go by to get a good idea of how well Dan's radiation treatment has worked.  He's had two brain MRI's in the past two months.  The tumor hasn't shrunk, but it hasn't grown either.  His oncologist has scheduled the next MRI for the end of April.  It can take up to 6 months for radiation to work on a tumor and his doctor thinks we just need to give it some time. Dan is feeling good and hasn't been suffering from any headaches-a good sign.

For the lung, Dan is scheduled to have a chest scan at the end of April as well.  This will be the first scan since his treatment. He's had no issues with the lung radiation and never developed any side effects. We are hopeful that all is well and his chest scan will show the tumors have shrunk and no new growth.  But, as has become the norm, we just have to wait.

In the meantime, we are staying busy with everyday stuff.  Jack is almost done with Kindergarten (the year has flown by!), Dan is staying busy with work, and I am working and taking a class at Boise State.  We just finished a great visit with some friends from Minnesota and Dan's mom, and are enjoying the spring like weather is this part of the country.

Hope you all are well- I'll update again after the next round of tests!

Jen

Lung Treatment is Done

Dan finished his last lung treatment on Thursday.  Due to some now resolved insurance issues and some crazy winter weather, treatment dragged on a little longer that we had first anticipated.  But he is done and, so far, with no side effects.  So what is next you ask?  Waiting.  It can take up to 6 months for the full effectiveness of radiation to be known.  The oncologist recommended Dan have a chest scan sometime around the end of March to mid April.  It would be difficult to judge any change to the tumor any sooner than that.  Thankfully, we'll be able to do all our follow up in Boise.

This coming week, Dan has a brain MRI scheduled.  We will meet with Dr. Smith on Thursday to see how his brain tumor is reacting to the radiation.  The hope is that the tumor has not grown since his last scan in December.  Pray for good news next week!

I'll keep you posted!  In the meantime, enjoy your long holiday weekend-

Jen

1st Lung Treatment Down, 4 more to go!

Just a quick update-Dan was finally able to start his lung radiation treatments today. We had hoped to start them earlier in the week, but our insurance company was dragging their feet. When we got to Twin Falls this morning we found out that insurance STILL had not approved the treatment, but Dan's doctor felt "confident" they would, and went ahead with the first treatment. Thankfully, Dan got a call later this afternoon that everything was approved, which is good because those radiation treatments aren't cheap! We really have been very blessed that Dan has great insurance. Treatment itself went really well, and Dan feels good.  The doctor reiterated that Dan should have very few, if any, side effects. He has 3 more treatments next week and then his final treatment sometime early the following week.

Thanks for all your well wishes and prayers, they are much appreciated!

Jen

Bumps In the Road Part 2

In trying to keep each posting from being the size of novel, I've broken up Dan's update into two postings. (Unfortunately as you will see, it is still the size of a novel…sorry!) If you are just logging on, you'll want to read the post below first. Picking up where I left off before…..

We came home from MD Anderson feeling a bit better about things, and with some hope that the tumor in Dan's lung could be treated. It was well worth the trip. The next Monday (two days before Christmas) Dan went in for his brain scan.  He was scheduled to receive the results on January 2.  That Thursday the doctor called to tell him the cancer was back, and the second tumor had almost doubled in size in the two months since his prior scan, to 2/3 inch.  Surprisingly, I didn't get as upset as I would have expected. I think at that point we both realized that if the cancer was back in his lung, it was likely back in his brain too.  We met right away with the radiation oncologist who showed us the scans and explained what was next.  The tumor had quite a bit of swelling around it and Dan was beginning to get some mild headaches.  Dr. Smith wanted to treat the tumor with radiosurgery, because the location of the tumor was too deep for standard surgery. Radiosurgery is essentially a laser beam of radiation that targets the brain tumor and kills the cancer cells.  The goal is to be precise within a millimeter to minimize any damage to healthy brain tissue. The fact that Dan had swelling around the tumor was actually in his favor because it would push away the healthy tissue.  Side effects are minimal-possible headache, tiredness, usually no nausea.  There can sometimes be long term effects, such as loss of some feeling in limbs or other stroke like symptoms, but there is no way to know if that will happen.  Those symptoms don't typically start to arise for 3-6 months after treatment and it all depends on how much healthy tissue was damaged.  Dan got a cool astronaut type head brace/mold created and started treatment on January 30.  He had three radiosurgery treatments over two weeks which went really well.  He had a little bit of a headache a couple of days, but otherwise, had no side effects.

While all this was going on, Dr. Smith also discussed the possibility of radiation for his lung.  MSTI (Mountain States Tumor Institute-the cancer center in Boise) does not have a machine that is capable of performing radiosurgery on the body. However, its satellite site in Twin Falls (about 1 1/2-2 hours from Boise) does.  Coincidentally, Dr. Smith's father (who I will refer to from this point forward as Dr. Smith Sr.) happens to run the radiation department at the Twin Falls site.  He has 30+ years experience in radiation oncology and was one of the founding doctors at the Boise MSTI location.  When they opened the Twin Falls site, he headed down there to run it and lobbied to get a state of the art body radiation machine.  Dr. Smith had already filled his dad in on Dan's case and they both felt he was a good candidate for radiosurgery to the lung.  Two things had to happen first-Dan needed a PET scan (finally!!) and a respiratory test (to make sure there were no breathing limitations).  A PET scan is a test they use to identify "hot spots" of cancer in the body. They inject a sugar solution in the body and since cancer cells feed off of sugar, any active cells will absorb the solution and show up like bright little fire spots in the body.  You can't use a PET scan to determine cancer in the brain, heart, or liver because they all absorb the sugar regardless of if any cancer is present.  Thankfully, only the two spots in the lung that we already knew about lit up. Dan also passed his respiratory test with flying colors so an appointment was made for him in Twin Falls with Dr. Smith Sr. for a consultation/planning of lung radiosurgery. All of this (brain radiation, PET scan, respiratory scan) happened over a two week time period.

Backtracking a bit, when we found out in November that Dan's cancer might be back in his lung we decided (with a little bit of pushing by me) that we needed to take a family vacation. It was something that I had wanted to do since Dan had been feeling better, but there is always something else to get done, or go do. Needless to say, the time was upon us that we just needed to go. So we planned a trip to the Hawaiian island of Kauai for January with our good friends the Teffts. Knowing that things were uncertain, we booked with travel insurance and the understanding that we may have to put the trip on hold depending on diagnosis and treatment outcomes. Thankfully, Dr. Smith was great about working Dan's treatment schedule around our one week trip.  Dan finished his brain radiosurgery on Thursday and we left for Hawaii on Saturday.  We had a great time and it was wonderful to get away, relax, and have some family time.  The nice warm weather was a bonus!

We got home from Hawaii on Sunday and yesterday morning Dan and I headed to Twin Falls for his initial consult with Dr. Smith Sr. Things went well, we got all our questions answered and Dr. Smith seems like a really good oncologist. He treats 1-2 lung cancer patients a month and has a 92% success rate in eliminating the lung tumors.  Dr. Smith Sr. did notice a couple of additional spots near the two tumors that look suspicious so they are going to radiate those spots as well.  Dan will have 5 treatments over a 2-3 week time period (depending on scheduling availability).  Side effects should be minimal like the brain radiosurgery-tiredness, possible developing of a dry cough (usually subsides about 1 month after treatment), little to no nausea.  The doctor doesn't feel Dan will notice any effect on his breathing because his lung capacity is more than sufficient to cover the radiated tissue.  As with anything, there is the chance that the radiation could cause more damage then expected but the very slight risks are still better than not treating it, or having to go through chemo.  Dan should find out in the next couple of days what exactly his treatment schedule will look like.

So, what does that mean going forward?  Honestly, we have no idea.  Best case scenario?  The radiation kills the brain tumor and lung tumors and Dan is once again cancer free.  He has a follow up brain scan in mid February to check the status of the treated tumor. If the radiation does kill the brain tumor, Dan then becomes eligible for consideration in a MD Anderson clinical trial.  In the meantime,  he'll stay on the Tarceva and continue to monitor the existing tumors after treatment.  With radiation, it can take several months for the tumor to die.  The short term goal is just to make sure it is no longer growing.

You may be wondering why we waited so long to update everyone.  Part of the reason is that we really didn't know what exactly we were facing, and once we did, we needed time to process it.  The other issue was that all this came about right at Christmas and it seemed wrong to throw it out there with a "Merry Christmas, have a great holiday!" Now that we've had some time, and have a treatment plan, updates will be coming more regularly. I am hoping that we will once again get to point where updates aren't necessary because Dan is going great.

Many of you have asked what you can do for us and the best thing right now is to just keep praying and thinking positive thoughts over the next couple of months.  Aside from being a little tired, Dan feels pretty normal.  He is working and we are just moving forward with our everyday lives.  We are so grateful for the many blessings God has given us in the midst of this situation, and for all the wonderful friends and family that we have.   We love and appreciate each of you so much.

More to come soon,

Jen

Bumps In the Road

When I last left you in early November I had promised that a one year anniversary/reflection on the year's events would be coming. And I had in fact begun to write that blog. During those two weeks as I wrote, reflected, edited, and reflected some more, Dan had his usual (every 3 months) chest CT. No big deal-things were going well. We went in to see his medical oncologist for the results on November 20 (One year to the day from his surgery) expecting to breeze in and breeze out with another follow up appointment set for 3 months down the road. The doctor walked in and matter of fact stated "something showed up in your lung on the scan".  I felt like I had just been sucker punched in the gut. In retrospect, we should have expected it. Dan's brain scan the month before had picked up some activity in the second tumor (previous blog post) but we truly were still hoping/praying that it was just a brain bleed and nothing serious. Still, Dan was feeling fine and there were no symptoms. The doctor wouldn't come right out and say that the cancer was back. He said there were a couple of suspicious spots and that it was possible that it could be some scar tissue that had broken loose. Dan asked what was the next step and was advised that we just wait a couple months, stay on his chemo pill, come back in two months for another chest scan and decide what to do then. When pressed for more info, the doctor said that if in January it was determined that the cancer was back, chemo would be the next step. The doctor wished us a happy holiday (yeah right) and in a matter of 10 minutes, the appointment was done. We were devastated, and I began to panic. No way were we going to sit back and wait to see what happened over the next two months. I turned to Dan (and on the verge of begging) told him he was going to call MD Anderson in Houston that day. It was time for a second opinion, and thankfully he agreed. He called, had his records sent that afternoon, and by the end of the week we had an appointment with a thoracic (lung/neck) oncologist there in two weeks.

In mid December Dan and I flew down to Houston for his appointment. MD Anderson is an impressive facility. If you've never been down in that area, the campus in unbelievable. The sheer number of medical facilities is overwhelming. Every type of specialty medical care is within a few miles radius along with a hotel zone that rivals the hotels circling any major airport/destination. When you receive your appointment packet, you are given specific parking/lobby/elevator information depending on what doctor you are seeing. When we arrived I understood why-there are 10 elevators to choose from. Each goes to its own wing. They had probably at least a dozen volunteer greeters in the main lobby to help you find your way.  It is a well oiled machine! Once checked in, Dan met with the Fellow that was working with his assigned oncologist Dr. Glisson. Both her and Dr. Glisson's knowledge of Dan's case was unbelievable. They knew every detail of what Dan had been diagnosed with, treated, results of all his scans, side effects, etc. We received a lot of useful information about the drug he is on (Tarceva) which explained some issues Dan was experiencing. They also explained that typically Tarceva is only effective for 10 months (which I had read), but that even with a recurrence of the cancer, they don't take patients off the drug. Through clinical trials they have found that staying on it keeps the tumor(s) growing at a slower rate, and can sometimes keep additional tumors from developing. MD Anderson also has a couple of clinical trials in which they are testing new drugs, in combination with the Tarceva, to increase the effectiveness. Right now they are showing a 50% success rate in stopping any additional growth in tumors. The biggest piece of information that we received was the confirmation from Dr. Glisson that it was in fact, not one but two, tumors in Dan's lung. The tumors were in the same spot where the initial tumor had been. The frustrating thing about that was Dr. Glisson called Dan's oncologist here in Boise and he agreed that it was cancer. Why didn't he just tell us that instead of telling us it "might" be scar tissue?  However, Dr. Glisson suggested that the tumors could be treated with radiation instead of chemotherapy, since he had no other occurrence of cancer. That was the first that radiation had been mentioned for the lung and we suddenly had some hope. The side effects for radiation are much less severe than chemo. The next issue was to determine what exactly was going on in Dan's brain, because if you have any active brain metastases, you are not eligible for participation in a clinical trial. Since Dan was already scheduled for a brain scan the next week in Boise, Dr. Glisson sent us home to follow up with Dan's radiation oncologist, Dr. Smith. Once we knew the results of that test, we could make a plan.