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!

Scott's Diagnosis

Today, we went up to Hunstman to meet with Dr. Cohen, who specializes in Nuero-Oncology. He will be the doctor overseeing Scott's future treatments. Last week we got the news that Scott's tumor is a stage 3 astrocytoma, and today we were able to sit down and discuss in detail with the doctor what that means and what the outlook is for Scott's diagnosis.

Scott's tumor is an Anaplastic Astrocytoma (or AA). There are 4 stages of astrocytomas, however stage 1 is only used to classify tumors in children. Since only stages 2-4 to classify adult tumors, Scott's is considered to be a mid-grade tumor. A stage 3 tumor can cover a wide range of tumors, where they can either act more like a 2 or more like a 4. When they reviewed Scott's tumor under the microscope, they discovered cells that cause them to believe his tumor will probably act more like a stage 4.

Scott's tumor is considered a primary brain tumor, meaning it started in the brain, and it is very rare for the tumor to spread and leave the brain. We don't know what caused it. Though they were able to completely remove the tumor, there is no way to completely remove all the cells left behind. They described to us that Scott's tumor is a cancer, meaning there is an uncontrolled growth of cells. The stage of Scott's tumor lets us know that these cells are aggressive and need to be treated with both chemo and radiation. 

Dr. Cohen explained that Scott's diagnosis is treatable, but not curable. We've completed the first part of treatment, which is to remove as much of the tumor as possible. The next phase of treatment will be the chemo and radiation, as I mentioned. They will begin this treatment in a few weeks. Scott will be given chemotherapy in the form of a pill and will also receive radiation treatment M-F, for 6 weeks. Side effects he may experience during this time include tiredness, nausea, and a weak immune system. Typically, males of Scott's age tend to handle the treatments very well, so hopefully he won't experience these side effects. After those 6 weeks, he will take a month off and then continue chemo/radiation 5 days per month for 6-12 months.

The most difficult part of Scott's diagnosis is the outlook. Most people diagnosed with an anaplastic astrocytoma typically live for 3-9 years.

Scott will also need to continue speech therapy and ocupational therapy. He will meet with a speech therapist 2-3 times per week and an ocupational therapist 1 time per week. In Scott's speech therapy appointment last week, they told us Scott is doing great so far and should recover his language, writing, and reading skills. He will most likely need these types of therapy for at least a few months.

Right now, we are going to focus on the upcoming birth of our son, and take things a day at a time. We are planning to have our baby up in Logan as we originally planned. If the baby doesn't come this week, I am scheduled to be induced on April 8th. 

Moving forward, we plan on being as hopeful and optimistic as we can, and enjoying every bit of time we have left. We were told that since Scott is young, he will most likely respond to the treatments well, which gives me hope we can beat the odds and have 9 years or more.

We know there have been many of you praying on our behalf, and we truly appreciate it. Though Scott's diagnosis is not what we wanted, we have felt strength from all of you and through our faith. Thank you again for all the calls, texts, and e-mails of encouragement and support. We love all of you and appreciate the many, many acts of service we have received during this difficult time.

Post Surgery News

Scott and I heard from Dr. Jensen this evening. He told us that the MRI they took after Scott's surgery confirmed that they were able to do a complete resection of the tumor, which is good news. We did find out, however, that his tumor is stage 3 - meaning he will need treatment in order to keep it from growing back. Dr. Jensen wants us to schedule an appointment so we can sit down together and discuss treatment options, etc. We'll be able to find out more information once we get in to visit with the Dr. and the treatment specialists.  Also, Scott got his staples out from the surgery - he had 21!

Day 4 Progress

Scott was released from the hospital this afternoon, and he is doing well - just tired. On Friday, we will go back up to Huntsman to have his bandage and staples removed as well as a speech therapy session. He will continue to have speech therapy over the next couple months and we will also have a follow-up visit with Dr. Jensen in a month. We should hear from Dr. Jensen on Wednesday to find what stage his tumor is and what treatment he will need as far as chemo or radiation, if any. Hoping for the best! Thanks again to all of you for the many prayers and help. We are so blessed!