Chemo Complete

So, for over a year now this chemo has been taking up residence at our house.  5 days a month for 12 months.  Originally the Dr. told Scott that he'd do 6-12 rounds of chemo, depending on if he could handle it.  Not only did he do all twelve rounds, but managed to be on the max dosage he could for most rounds.  And Scott handled all twelve rounds with courage and strength.  It was exhausting.  It was nauseating.  It was hard.  But he did it.  And I'm so happy to say that chemo won't be a part of our lives anymore.  Hopefully for a long time.  SO thankful for this medicine, but glad to be parting ways for now.

He Lives!

Well, it's been a year.  I know, it's been a while since I've written an update on Scott and how life with cancer is going.  The truth is that for quite a while things have pretty much stayed the same.  Even though limbo is not my favorite place to be, nothing bad has happened, and for that I am thankful.

Since my last update, Scott has had multiple MRIs, all of which have come back clean.  We are so thankful that he hasn't had any regrowth or cause for concern with those.  He has continued taking the chemo once a month, and he only 3 rounds left.  We are SO excited for him to be done with chemo, and can't wait to celebrate when it's over.  Though Scott has handled the chemo extremely well, the last couple rounds he has been experiencing some nausea and the exhaustion is still a tough battle the week he is taking it.

Scott has still been making improvements with the language deficits from his brain surgery last year. While he has made huge strides of improvements, it is still difficult for him to read, and he still has word finding difficulty from time to time.  It's been a very slow process for him to regain those skills, but I am so incredibly proud of him.  When I reflect over the past year, I really feel so inspired by Scott.  I don't think I mentioned this previously, but when Scott woke up from his surgery last year, he could barely even say a word.  The nurses continued to ask Scott questions the first couple days after his surgery to try to get him talking, and he couldn't even tell them Lydia's name that first day.  I can't even begin to express how thankful I am for his progress over the past year and that he is where he is today.  To go from not being able to talk at all to reading, writing, and speaking almost normally is amazing to me.  And I've got to say, as difficult as it has been to watch the person I love the most go through something like this, it has been one of the most humbling and inspiring things I have ever witnessed.  The fails, the successes, the hard work, and determination through the slow progress have left me so inspired by the man I married.  He's a keeper.

Back in December, Scott and I decided that it would be best for him to quit his PhD.  It was not an easy decision to make, but we feel that it is the right one for now.  It was hard to let go of all the hard work Scott had put into his schooling and the goal he had of completing it.  However, cancer has changed our perspective on a lot of things.  We decided we wanted to stay in Utah (if possible) close to our families, close to Huntsman, and hopefully find Scott a low(er) stress job than that of a PhD. Also, Scott has lost a year of working towards his PhD.  It would take a couple more years to finish it at this point, and he is going to run out of funding in August.

Because of this decision, in January I went back to work 20 hours a week in my office, and Scott has been staying on for 20 hours a week in his lab, still working for Dr. Smith. It's been an adjustment not to be at home with the kids full time, but it's been a good balance for me.  Again, we have been so blessed to have understanding bosses who have allowed us flexibility with our situation.  Scott has also started looking around at jobs and companies he would like to work for.  He's applied and interviewed for a few, but no offers yet.  He's not sure he's quite ready to take on a job while he's still working through his aphasia, but I think it's great that he's researching and putting himself out there. We don't know how timing will work out, but hopefully Scott can get to a place this year where he's comfortable with starting a job and have a little more stability.  So we wait, and hope.

Emotionally, I feel like we're starting to get to a place where we've accepted this trial, and we're going to do the best we can to live it, brain cancer and all.  It's still hard though, and some days it's a painful reality knowing how fragile life is when you know it really could be taken any time. Even though none of us know what is going to happen or what trials we're going to face, it's nice to be able to feel like you have to power to make all your hopes and dreams come true.  I'm doing my best to stay positive and grounded, but some days I really miss that feeling like we have our whole lives ahead of us, and our potential was limitless.  I always pictured Scott getting a solid job with all his hard work and education, buying a nice home, and having more kids (even though right now I feel maxed out with 2... ha ha).  It's hard not to focus on the obstacles we face when Scott's aphasia has left him with deficits that make it hard to land a job (and fear of being able to keep one), financially buying a home is hard when we don't have the long-term financial stability to take on a mortgage, and 12 rounds of chemo has left us wondering if we'll ever be able to have kids of our own again.  More and more, I feel like I'm learning the power of the Atonement, particularly the hope it brings. Sometimes, your present trials and circumstances can make you feel hopeless, but I know that because of the Savior, there is always hope, and no matter what your circumstances you can be happy and the future can be bright.

There are so many things I am learning through this trial, but lately I've been reflecting a lot on a talk by Elder Bednar, entitled, "That We Might 'Not ...Shrink.'".  When we found out last year that Scott has cancer, there were multiple people who passed this talk along to us, and it taught me some valuable things that I hadn't ever thought about before.  One thing in particular I'm learning more about is faith.  I think so many of us focus on this aspect of faith:

"There are two kinds of faith. One of them functions ordinarily in the life of every soul. It is the kind of faith born by experience; it gives us certainty that a new day will dawn, that spring will come, that growth will take place. It is the kind of faith that relates us with confidence to that which is scheduled to happen. … There is another kind of faith, rare indeed. This is the kind of faith that causes things to happen. It is the kind of faith that is worthy and prepared and unyielding, and it calls forth things that otherwise would not be. It is the kind of faith that moves people. It is the kind of faith that sometimes moves things. … It comes by gradual growth. It is a marvelous, even a transcendent, power, a power as real and as invisible as electricity. Directed and channeled, it has great effect. …"

-Boyd K. Packer

I know I've always focused on this side of faith.  The side that causes things to happen.  There are countless stories and experiences of the power of faith, prayers, fasting, and priesthood blessings that have caused great and amazing things to happen.  But, do we also have the faith that shows so much trust in Heavenly Father, that we submit to his will, and accept when the things we want to happen don't?  

Going back to Elder Bednar's talk, he tells the story of a young couple, where the husband was diagnosed with cancer.  In one instance, Elder Bednar visits the couple and describes his thoughts as he asked them these questions:

  "'...Do you have the faith not to be healed? If it is the will of our Heavenly Father that you are transferred by death in your youth to the spirit world to continue your ministry, do you have the faith to submit to His will and not be healed?'

I frankly was surprised by the questions I felt prompted to ask this particular couple. Frequently in the scriptures, the Savior or His servants exercised the spiritual gift of healing (see 1 Corinthians 12:9;D&C 35:9; 46:20) and perceived that an individual had the faith to be healed (see Acts 14:9; 3 Nephi 17:8; D&C 46:19). But as John and Heather and I counseled together and wrestled with these questions, we increasingly understood that if God’s will were for this good young man to be healed, then that blessing could only be received if this valiant couple first had the faith not to be healed. In other words, John and Heather needed to overcome, through the Atonement of the Lord Jesus Christ, the “natural man” (Mosiah 3:19) tendency in all of us to demand impatiently and insist incessantly on the blessings we want and believe we deserve."

It's been a year of growing and stretching to places I never thought possible, but I'm still learning to overcome the 'natural man.'  Some days I'm not sure I have the faith strong enough if it turns out God's will is for Scott not to be healed.  But, I'm trying, and my hope is that I'll get there.  Right now, I'm just trying to celebrate each milestone of accomplishment, each inch towards figuring out where we're heading, and just how we're going to get there.  Most importantly, I'm focusing every day on the fact that the Savior lives.  He understands fully and completely the challenges we have faced and will face in the coming months and years.  I'm so thankful for this Easter season, and this time that we celebrate the Savior's resurrection.  The fact that he lives again, and overcame death gives me so much hope and reminds me that the power of the Savior's Atonement is limitless.  Miracles do happen. He lives!

Chemo and Second Follow-Up MRI

Things have been going pretty well since the last update I wrote. Scott handled the max dosage of chemo very well again, and still didn't experience nausea. He still gets pretty wiped out for several days during and after taking it, but he says even the fatigue is getting to be more manageable. The Aphasia is still a battle. Reading is still tough, although Scott says he does feel he is making some progress and getting a little better. I think he's doing phenomenal, although of course I wish the progress was quicker. I remember in the hospital when they told me he would need speech therapy for at least a few months, and that was really difficult news for me to hear. At first I thought he might regain those skills within a couple of weeks, so to hear that it would take months was overwhelming. Once those first few months came and went, it became even more apparent that this was going to be a very slow and gradual process of recovery. Now, six months in, it's tough to realize again that he is probably only halfway to what we hope is a complete recovery.

A month ago, Scott had another MRI. I know we are pretty early in the game, but I couldn't help but be nervous. I don't know if I'll ever be able to shake those nerves going in to those. When they showed us the images from his MRI, they said a lot of the swelling and inflammation had gone down which helped them get a much clearer picture of how things looked. This time, they said everything looked great - no regrowth, and nothing to be concerned about, which is great news. Also, Scott's hair has started growing back, so it's been nice to see him with hair again :)

We're still not really sure what is in our future as far as Scott's schooling or how we plan to provide for our family long-term. A lot of that depends on Scott's recovery over the next 6 months. A while back I know I mentioned the possibility of me starting to work on an MBA. That will probably be in my future at some point, but I've decided that now is not the time I want to pursue it. With two kids under the age of 2 at home, it's just too much for me right now. If I did do an MBA, it would take away most of my nights and weekends, which I'm not willing to sacrifice that time I have with Scott or my kids right now. If we don't have more than a few years, I don't want to look back and regret sacrificing that time together for something I could do later on.

Going through this experience is constantly teaching me and causing me to grow. Having been on a mission and having the opportunity to talk to a lot of people about religion and different types of life situations and trials, it always seemed that many people didn't believe in God because of all the bad things that happen. There were always the questions of, "why me?" and wondering how a loving God could allow so many bad things to happen. Of course after learning the odds of Scott having what he does, it's hard not to think - how did this happen to us? It would have been so easy for this trial to pass us by. I know it would be easy to wonder and question Heavenly Father's love for us, but the truth is, this is one of the times in my life that I have felt His love the most. I know that might sound a little backward, but I can't deny the fact that He has given us an abundance of strength and love through all of this. I feel like He knew we needed this trial, but because He loves us so much, He has tried to make it as easy on us as He can. This trial could be extremely difficult financially, emotionally, spiritually, and, for Scott, physically. And it has been. I don't think anyone could go through something like this without difficulty, tears, and discouragement, but we've been amazed at how well we've been able to handle it and push forward. It's been amazing how we've been provided everything we have needed and more through family, friends, ward members, and neighbors. I know I've said this before, but I can't believe how generous, kind, and loving everyone has been. I've learned so much from all of you about how I need to live my life and the ways that I need to give to others. It's through all of you that I have gained a lot of strength.

I've also been amazed at how Heavenly Father prepared us for this trial. When I look back over the last couple of years, I can see ways that he blessed us and prepared us to go through this. We've both been blessed with amazing bosses, people who have been completely understanding, patient, and willing to work with our situation. I also have to recognize everything I've been given in the first place. We've had the chance find each other, be married for eternity, have 2 adorable kids, and know that we can be together in the next life. Some people never have the opportunity to have those things in this life. No matter what happens, I'm so grateful for the knowledge I have of a loving Savior and Heavenly Father and the Plan of Salvation. In fact, I've realized that gratitude, even during this difficult time is what has helped me have a positive, hopeful perspective. In April's conference, President Uchtdorf said something that I keep going back to over and over again. He said:

"Being grateful in times of distress does not mean that we are pleased with our circumstances. It does mean that through the eyes of faith we look beyond our present-day challenges.

This is not a gratitude of the lips but of the soul. It is a gratitude that heals the heart and expands the mind. True gratitude is an expression of hope and testimony. It comes from acknowledging that we do not always understand the trials of life but trusting that one day we will."

His words have helped me realize that it is okay when we aren't exactly happy with trials we are going through. They are hard. While I'm grateful for all I'm learning, I'm not happy that Scott has cancer. But, that doesn't mean we can't have gratitude, happiness, and faith. Those are what help us see past the pain and discouragement and know that there is a purpose and meaning that we will better understand someday. I truly feel that gratitude has, like President Uchtdorf said, helped heal my heart and expand my mind to be open and receptive to the things I have been learning. It's definitely a process with good days and bad, but slowly we are moving forward and keep hoping for the best.

Chemo and First follow-up MRI

Since Scott has completed his initial round of chemo and radiation, there are a few things I wanted to update everyone on.  First, we went to visit with Dr. Cohen back on July 3rd, two weeks after he completed everything.  They did an MRI right before our meeting, however, there wasn't a whole lot of new information they could tell us at that point.  There was still swelling from the radiation, and it was still very soon after the treatments.  Basically, they told us they will use that MRI as a baseline to compare future MRIs to, and at that point - everything looked normal and good.

In this appointment, I also asked Dr. Cohen more about Scott's Aphasia (language deficits from his initial surgery) and what we can expect as far as recovery.  Recovery is still very slow and gradual, and Dr. Cohen said we should still expect months of recovery.  Ever since Scott completed the 6.5 weeks of chemo and radiation, he's been trying to go to work/school every day, for about 7 or so hours.  During the first week and half there, he finished an assignment from the class he was given an incomplete in, which resulted in his teacher giving him an A (yay!).  He also started to try to review papers, learn C++, and work on some programming.  It's been a real struggle for him.  The first few weeks were very hard on him.  Reading is still extremely difficult.  He says the comprehension aspect of reading is what is the hardest.  Reading a sentence is just too many ideas all at once that he can't grasp and understand.  One morning he was trying to review a paper and he told me that he tried for a couple of hours to just get through the first sentence.  I don't even know how he pushed through long days and weeks like that, but he did.  I can't imagine going to work and trying to learn, study, and perform on a PhD level when reading is as hard for him as it is.  All I can say is, he's been a trooper trying his best to move forward, and doing all he can to exercise his brain and try to get back to where he was.  At this point, Scott says he hasn't really noticed a difference in his reading skills, but he says he's gotten use to going in to work and it's not as overwhelming as when he first went back.  Right now, he's signed up to take a class fall semester.  He's going to give it the first two weeks to see how it goes, and depending on how he feels, he may drop it if he feels he's just not capable at that point.

Back in mid July, Scott started his first of 6 to 12 monthly rounds of chemo.  His chemo (temodar) is just a pill that he takes for 5 straight days, has 3 weeks off, and then starts again.  During this first installment, they upped the dosage he was taking while he was doing radiation.  Because of the increased dosage, they said he may be more likely to experience nausea, more fatigue, etc.  Surprisingly, Scott handled it very well, and still didn't have any nausea.  He still experienced a lot of fatigue, however.  Throughout all the treatments, Scott's vitals and immune system have looked completely normal.  The nurse said no one would even be able to tell he was taking chemo based on how his vitals look.  That has been a huge blessing!  Especially considering we have two kiddos that aren't exactly awesome at keeping germs to themselves. . . :)

On Thursday, we visited with Dr. Cohen again.  It was a pretty routine visit, with no new information.  They decided since Scott handled the last round of chemo so well that they are going to put him on the highest dosage of Temodar they can.  He will start taking those pills tomorrow through Friday.  We are really hoping he can handle this new dosage well - if he can handle this dosage, it will be as hard as it will get.

Lately, I've been thinking a lot about hope and faith.  There is a lot of information and research that talks about how important hope is when you have cancer.  We've heard time and time again how having hope can make a difference in how well treatments go and also with prognosis.  I recently took the time to read through a talk by President Uchtdorf, that he gave in October 2008 when I was still on my mission.  It really stood out to me at the time, and re-reading this talk again, there were new insights I was able to gain after going through all that we have in the past few months.  One section in particular really stood out to me:

"The adversary uses despair to bind hearts and minds in suffocating darkness. Despair drains from us all that is vibrant and joyful and leaves behind the empty remnants of what life was meant to be. Despair kills ambition, advances sickness, pollutes the soul, and deadens the heart. Despair can seem like a staircase that leads only and forever downward.

Hope, on the other hand, is like the beam of sunlight rising up and above the horizon of our present circumstances. It pierces the darkness with a brilliant dawn. It encourages and inspires us to place our trust in the loving care of an eternal Heavenly Father, who has prepared a way for those who seek for eternal truth in a world of relativism, confusion, and of fear."

First of all, this quote solidified for me the importance of having hope when dealing with some kind of sickness.  An apostle states right here that the absence of hope can advance sickness.  It's amazing to me how connected the body and our spirits are, and how taking care of one can effect the other.  Second, I feel that throughout this whole process, Scott and I have been on both ends of the spectrum described here.  When we first found out he had cancer, I felt overwhelmed.  For the first little while, despair did set in.  I feel like I started mourning over opportunities I was sure would be taken away - growing old together, watching our kids grow up together, serving missions together, having more kids, Scott being at our kids weddings and graduations, etc.  I also felt a lot of fear when I would have thoughts about being a single mom, raising kids alone, becoming a financial provider, and taking on all the roles and responsibilities that Scott fulfills in our lives now.  All I can say is, the more I would think about those things, the more life seemed to lose it's vibrancy and joyfulness, as President Uchtdorf described here.  It truly can feel like a 'staircase that leads only and forever downward.'

However, after the initial sting of all this, I felt the power of hope.  I accepted that Heavenly Father loves us and had given us this trial out of love. I truly believe there is a purpose and reason for trials and suffering in this life.  I don't exactly know all the reasons why we were given this trial, but I know we were meant to have it.  Once I let go of all my fears, I feel like I was finally able to completely put my trust in Heavenly Father, and accept whatever he has planned for our future.  We tried so many times to look into our future and plan for what could happen and what direction we thought we should take. The truth is, sometimes you really can't see where you're going next.  Each day, week, and month brings something new and trusting in the Lord and relying on him is sometimes all you can do while trying to move forward.  Sometimes you just have to let go of having the control and trust that He will provide and take care of you each step of the way.  I know that is happening in our lives, and having hope has truly restored our happiness, joy, and gratitude for all that we do have.  

Radiation Complete!

After 6.5 weeks, 33 radiation treatments, and 49 days of chemo, Scott is officially done with his first round of treatment!  To celebrate, Scott's sisters Denise and Michelle threw Scott a party.  We had delicious subs, and everyone got silly string to celebrate.  The next morning, we loaded up a TON of stuff and headed back home to Logan.

It's been nice to be home, and we have somewhat of a normal routine again.  It was nice to get back into our own ward at home, and to see our friends and neighbors that we love so much again!  Lydia, Emmitt, and I are planning lots of play dates so we can catch up with everyone (and so Lydia doesn't go through cousin withdrawal too much).  I've been back to work for about a month now, which has been both a challenge and a blessing.  It's been tough to fit in the time with 2 kids, but it's been very worth it for me.  I continue to get great experience with my job, which is extremely valuable if I ever need to support our family full time.  I have been very blessed to work for great people, who have been very understanding and flexible with our situation.  I've been looking into possibilities for me to get my masters part-time at a few different universities.  Potentially I could start a program within the next year if we feel the time is right.

Scott has also returned to work/school.  The honest truth is that it has been really difficult for him.  His reading, comprehension, writing, and speaking skills are still slow, exhausting, and challenging for him.  His first week back, he put in about 15 hours.  He said what he accomplished in those 15 hours, he feels like he could have done in 1 hour prior to his surgery.  Scott is also still very tired from his chemo and radiation, and has still been napping when he can.  It will probably take a few weeks to wear off.  He goes in for a follow up MRI on July 3rd, however they probably won't be able to tell us much about how the treatment went.  They will be doing another MRI in a couple of months when Scott's swelling has gone down - this MRI should help us have a better idea of what the status is with the cancer.  He has a month off treatment, then he will start chemo again.  He will do double the dosage of chemo for 5 consecutive days each month for 6-12 months.  During that time they may even up the dosage more if Scott can handle it.  They told us the chemo will cause him to experience the same fatigue he has been experiencing during these past 6.5 weeks.

Right now, we are just pluggin' along.  There are a lot of unknowns right now for us, and some days it's a little overwhelming trying to figure out what are plans are moving forward.  We're still just taking things a day at a time and trying to rely and trust in our Heavenly Father to help us know what is best.  When I look back at everything that has happened over the last few months, I know he has guided and blessed us through this process so far, and know he will continue to do so.

Chemo and Radiation

Scott has completed 19 of his radiation treatments and has 14 left.  His last one is scheduled for June 16, and let me tell you, we are going to CELEBRATE when they are over with.  The first couple of weeks, Scott did great.  He had mild symptoms of nausea, fatigue, and a headache here and there.  However, these last 2 weeks or so he has been very tired.  He usually goes to bed pretty early and tries to nap every day.  He's also been doing his best to exercise and maintain a healthy diet.  The dietitian at Huntsman recommended he follow a plant-based diet, with lots of variety in fruits and vegetables, 100-140 grams of protein every day, little or no sugar, and red meat only once a week.  He's been doing awesome, especially with staying away from the sweets.

Dr. Cohen visited with us today to check in and see how Scott is doing. We also discussed a little bit about the chemotherapy that will follow this initial 6.5 weeks.  After Scott has a month off, he will continue to take the chemotherapy pills for 5 consecutive days each month.  When he starts doing that, the dosage will be about double what he is taking now, and they will evaluate in the future if they will up it even more after that.  During those 5 days every month, he will most likely be experiences the loss of energy and fatigue he has been dealing with right now.

Even though this has been hard on him, Scott doesn't complain.  He is doing awesome and has had a great attitude.  He's also been so helpful to me with the two kids.  Even though he is exhausted, he still offers to take the kids for me, etc. when I'd like a break.  He's an amazing husband, and there's no one else I'd rather have by my side.

Scott's hair started falling out last week.  He is only suppose to lose his hair where the radiation goes in and out of his head, but since he's been losing big patches on the left side, he decided it would be best to shave the rest of his head.  I wasn't sure what to expect, but I think he looks pretty amazing as a bald guy :).

Many of you have asked how we are doing with all of this.  Honestly, it's a whirlwind.  We have good days and bad days, but we are doing our best to move forward and live life.  For the most part, we are trying to have courage, faith, and hope, but sometimes it's hard not to feel overwhelmed and sad by the thought that our time together may be cut shorter than we would like.  We know that miracles can happen, but we also know that Heavenly Father has a plan for what is best for us, and we don't know what his will is or what our future will hold.  We have strong faith and trust in Heavenly Father, so we're just going to continue to live a day at a time to the fullest of our ability.  Scott plans to try to go back to work after he completes his radiation.  He will most likely still be experiencing fatigue for a while after his treatments, so he's going to do the best he can.  He is still working on his language, reading, and writing skills and they gradually continue to get better.

Lastly, I want to say THANK YOU.  I can't tell you how many times I've wanted to sit down and write each of you personally a thank you note.  I finally came to realize there is no way I could thank everyone who has done something for us over the last 3 months.  There are so many of you that have given us your time, support, babysitting, meals, money, love, e-mails, texts, etc.  I honestly don't know how we could be making it through all of this without the many of you who have been so generous.  I am in awe of the wonderful examples we have around us, and am humbled to be the recipient of so many selfless acts of kindness.  We are truly surrounded by amazing friends, family, and ward members.  So, thank you to each one of you.  Even though we haven't been able to respond and thank all of you individually, we truly appreciate everything and the burden of this trial has truly been made lighter because of so many of you.  We love all of you!

Some Good News

Today we met with a dietitian, speech therapist, radiologist, oncologist, and the neurosurgeon. It was a long day! We scheduled his chemo and radiation to start next Wednesday. As I mentioned before, he will be doing this radiation treatment 5 days a week for 6 weeks and the chemo will be every day for those 6 weeks. Our discussions with the doctors mostly centered around the side effects he may/may not experience (nausea, tiredness, loss of appetite, loss of muscle mass, etc.) and the medications he will be taking.

We did have some positive news, which we are very happy about. Dr. Cohen told us he had gotten a result back about Scott's tumor where he tested positive for the IDH Mutation. Apparently, those who have AA where the IDH Mutation is present respond better to treatments and take longer for the tumor to grow back. With Dr. Jensen being able to perform a complete resection and the presence of the IDH Mutation, there is a lot of hope for many years, despite the original outlook of 3-9 years. The radiologist also talked to us about a lot of positive research going on that may improve chances for survival in the future.

Thank you again for all your love and support. We are so blessed to have many wonderful family and friends helping us through this!