Another Birthday

Last week we celebrated three birthdays at our house very differently than they were celebrated last year.  It was wonderful! Derek had a German Chocolate cake instead of a Jell-o cake. Everyone opened presents on their actual birthday instead of a couple days before it. Nobody slept at the hospital that night. Plenty of food was consumed throughout the day and no feeding tubes were involved. We had our little family luau party in a different house in a completely different state. We interacted with many doctors and nurses last year under a cloud of anxiety about what was yet to come for a cancer-filled body. This year we also met with a doctor but it was a positive, hope-filled visit wherein we discussed another clear scan and a body that is still cancer-free for the moment.

Derek very much enjoyed celebrating his birthday with Savannah and Normandy and being involved with that milestone in their lives.  We very much enjoyed seeing Derek turn one year older... and are so grateful that he is healthy! We couldn't help but think about all that we have learned and experienced over this past year... not all bad things, but it is nice to be where we are now, instead of where we were then.  We hope to participate in many more happy birthdays like this one in the years to come!

Cruising

Hello faithful readers!  Our family is doing well.  Tanner is busily preparing for the competitive Indoor Drumline Season. Lehi took First Place in the State last year, so he's excited about being a part of something awesome.  The competitions start in a few weeks, so we'll see how they do.  He'll even get to take a trip to Denver as part of the season!:)  Matthew has finished the Cross-Country season and is conditioning for Track.  He has enjoyed many new workouts at home with his weights that he received at Christmas.  Haddie is still somehow managing to conquer her very difficult math class. We are proud of her for her efforts and are happy to see her many hours of hard homeworking pay off.  Austin just got braces and is worried he will never play his trumpet again!  He is looking forward to a fresh start at school with the beginning of a new semester.  Savannah and Normandy have just started a tumbling class at a local gym.  I have been so impressed with their abilities to do the stunts you see done in a gymnastics floor routine and am grateful that they are learning the proper technique.  They are loving it so far.  I have finally motivated myself to do some digital scrapbooking and am working on a family history of 2012... it's addicting.

Derek has had another wonderful report from his oncologist.  All blood work is still looking great.  They sent for some tests to be run on his tumor tissue from last year's surgery (crazy they can do that, eh?!) and found that he tested in such a way that he will have one more treatment option available to him besides chemotherapy, so that was good news... some kind of "Biotherapy."  The doctor was very positive about the ability Derek will have to try a variety of treatments because they've been able to get the cancer under control thus far.  They will do another scan on the 25th and continue to watch for the first indicators that it is starting to grow again and then we will jump in with a new treatment plan if needed.  We are still hoping to enjoy some time without any kind of treatment...the "Chemo Holiday" has been fabulous.  Well, that's where we are today!  Happy January!:)

What a Ride!

One year ago today Derek had his colonoscopy and we felt relief to know that there was a very real reason for why he had felt so horrible for the previous 5 months.  The gastroenterologist's initial diagnosis was Crohn's Disease, but he did say he had sent off a biopsy of the mass in his colon just to rule out the possibility that it could be colon cancer.  He assured us the chances of that were extremely rare and that he would be very surprised.  Our thought was "Colon Cancer?... Of course it is not colon cancer!" We were hopeful that whatever it was it, it would now be possible to treat it and Derek would be able to finally start feeling better.

As we all know, two days later we got the call about the results of the biopsy.  I will always remember sitting at our desk across from Derek as he wrote on a pad of paper between us: COLON CANCER.  As the doctor explained that we would be hearing from other specialists and proceeding forward with treatment for cancer, not Crohn's, Derek and I just looked at each other with raised eyebrows and shrugged shoulders.  And so it began... the emotional and pivotal year of 2012.

I can't say I was sad to see it go a couple of nights ago.  I look forward to a fresh new year... even though, in the end it could turn out to be just as hard or harder than the last one. If so, that is okay. We have learned that with hard things come blessings!  That said, I will admit that looking back on the beginnings of our wild ride started to make me feel a bit melancholy and ill.  I decided to remember instead that it was a January 3rd, eighteen years before cancer, when Derek and I went on our first little outing alone together to get hot chocolate. Thinking of hot chocolate always makes me feel happy and drinking hot chocolate is even better!  Since Derek and I typically commemorate that beginning of our romantic relationship with a yummy cup of hot chocolate, I am looking forward to a quiet, warm moment yet to come!:)  It's all about perspective, right?

The update on Derek is that we don't know anything new, but he has thoroughly enjoyed feeling better and not having to undergo any chemotherapy treatments for the last two months.  It is nice to not be constantly at a medical facility being reminded of a yucky diagnosis.  He has popped in for blood tests a couple of times and will see the oncologist next week to discuss the results.  We are just watching for slight indications of change, but hoping for steady numbers and more time.

The kids are doing great!  Christmas was lovely.  We spent a week away from home, visiting Derek's parents in Texas and some Colorado friends as we traveled to and fro.  We continue to be grateful for each of you and the time we spend with family and friends is such a treat.  Happy New Year to you all!

Bella Vista

Just a quick note, as a follow up to the last post...
We recently made another visit to the new doctor after Derek had some additional tests done and received another piece of good news.  The oncologist is convinced, after looking at the PET scan report, that there are no active cancer cells in Derek's lymph system.  There is calcification because of the chemotherapy, which is why the lymph nodes look enlarged, but no cancer.  The doctor is still of the opinion that a break from treatment will be good.  It will allow his body to recover a bit.  Hopefully his platelet count will come back up, his organs will be happier, and, if the break is long enough, the neuropathy he has been experiencing in his hands and feet will improve.

The plan for the future is to enjoy the break!  Derek will have blood work done again this week and then probably every four weeks.  We will watch his CEA count.  Currently it is sitting nicely in the normal range.  If it goes up much, the oncologist will order some new scans to see what is causing the number to rise, and then treatment, of some kind will likely ensue.  We obviously don't want cancer cells springing up in abundance without being treated, and we will just address that if it happens.  The doctor said that Derek's cancer is considered to be in remission, with a medical science expectation that it will fully return at some point.  Our feeling is that it is in the Lord's hands and we will be grateful for each day that Derek can be healthy.

We are so happy to be at this point.  Derek was so sick last year at this time.  It has not been a fun year for him, but his weight is back where it was, his colon is tumor free, and he is feeling so much better in so many ways.  We realize more fully how fragile life is and how dependent we are upon the Lord.  We have learned that everyone has trials... that is how we become better people.  We are grateful for the trials that have given us opportunities to turn our lives over to Heavenly Father, allowing him to help us feel loved and comforted... often through people that He sends to help us.  We hope to never forget the way we have felt supported, as we have allowed the Savior's atonement to carry us through this potentially hard time.  We will never be able to adequately verbally express our love and appreciation for those who have responded to promptings and done kind, thoughtful things for us when we needed it most and for all of you who continue to pray for our family and exercise faith in Derek's behalf.  We have seen miracles and know that we will continue to see them.  Heavenly Father has spoken peace to our minds concerning this matter and we are so grateful.

Changing Lanes

Today (Thursday) we met with a new oncologist.  We were told that he would be the opposite of Derek's current doctor and I think that was definitely true.  He was awesome about listening to where we were coming from, where we were hoping to be, and discussing possible ways to get there.  He answered all our questions in an informative way, as if he really wanted us to understand what he knows about treating cancer... it was reminiscent of our days with the Colorado oncologist that we liked so well.  I don't know that it is truly possible to discuss Stage 4b Colon Cancer in a positive, happy way, but we felt much more positive and happy when we left than we have for a long time.  We saw first hand that this type of doctor will come at the cost of our time.  I am certain that today will not be the only time we wait several hours past the appointed time to meet with him.  He is very busy and very concerned about his patients, but we feel we were led to this doctor through much prayer and we felt good about the time we spent with him today.

It is difficult to summarize all that was discussed in a brief format, but basically this doctor looked at the past scans that have been done and feels that the cancer has been stabilized.  The previous areas of concern have now been labeled "Unremarkable" and the tumors are at an "Immeasurable" size.  Even the protein count that is an indicator of sorts, of the amount of cancer cells in his body, is within a normal range. Derek's spleen is quite a bit bigger than it should be and he still has some enlargement in his lymph system, but that has not really improved with the last four chemo treatments.  His platelet count, as previously mentioned, has been low since the beginning and very low at recent appointments.  They did some blood work on Thursday and determined that it has come up slightly, which is good news.  This oncologist feels that the platelet count is low because the spleen is so enlarged, which is most likely directly related to the amount of chemo he has gone through and the need his body has of "catching up" and bouncing back a little.  He is gathering some other data about tests that may have been done in Colorado and might even run an extra scan on his liver, but his thought is that Derek should take a "Chemotherapy Holiday" so we can just see what happens.

We were happy that this oncologist seemed open to the idea of thinking outside the box.  Perhaps this patient with Stage 4b Colon Cancer will be different from others?  Maybe a miracle has occurred and the cancer will not regenerate?  Maybe this is the best it will ever get and he can at least enjoy a little reprieve from the rigors of the chemotherapy for a bit?  Maybe the cancer has cleared enough from the liver and other places that they can try some radiation therapy on the lymph nodes and keep it from spreading for a long time???  Instead of just treating Derek like "He will be dying anyway, but we'll just do chemo for as long as we can to buy him some time," this doctor acted like he would truly try to fight it with whatever methods he has available to him.

We know that ultimately, it is only through the Atonement of Jesus Christ that Derek will be healed and nothing medical science has to offer gives us any hope of a full recovery.  We also know that spitting on dirt and rubbing the mud on the eyes of a blind man did not give that blind man sight.  Miracles happen in the hands of the Savior. Our hope is found in the power of the priesthood and the faith we have in blessings that have been given.  We have seen miracles already, which we know have come about through the fasting and prayers of our friends and family, and even through the friends of family and the family of friends that we do not even know:)  The oncologist was pretty amazed at the amount of chemo Derek's body has been able to endure to this point and we know that his ability to continue working and to be outwardly healthy has been a miracle. We are so grateful and will appreciate any time that Derek has here to do the things he needs to do.  We will enjoy every minute of the chemotherapy vacation and continue to pray for healing... whatever that looks like to Heavenly Father.  For now, we will move forward with the new oncologist, hoping to do all we can and then let the Lord do the rest.

A Philosophical Pause:)

I have been attending a little class each week where we have been studying the parables of the Savior in The New Testament.  Today we were talking about some parables about prayer.  I wrote down several thoughts that I felt would help me to focus my prayers a little better and was glad to be reminded that it is okay for us to be persistent in praying for things that are important to us, whether they are temporal needs or not.  One particular comment was made, actually by my cousin Julie who also attends the class, which I think I really needed to hear.  In an effort to internalize it, I will attempt to verbalize it.  She suggested that we ask ourselves: "Have you prayed about it as much as you have talked to other people about it?"

I couldn't help but think of all the people that I talk to, about things I worry about... things I am grateful for... things I have concerns about...  I know that Heavenly Father knows what is in my heart and mind, but do I talk to Him about them as much as I talk to other people?  Probably not.

I was reminded that I should share more in my prayers about the joys I experience each day as a mother.  I should talk through my concerns with Him just as passionately as I do with those who are so good to listen to me.  I should spend the same quality time in prayer that I enjoy spending in meaningful conversations with my dear friends and family.  I hope to be better about this because I know that He listens.  His time is precious and I don't want to waste it with insignificant ramblings and wishlists.  I might even spend a little extra time listening, in fact... or maybe "feeling" is the word I'm looking for... a little extra time feeling, because I know He cares enough to respond.

Different Directions

Hello to my very patient readers.  Thanks for checking in!  Isn't October the best month of the year?!:)  I love adding cardigans and fuzzy socks to my wardrobe, while still enjoying time outside. It has been a familiar fall with my return to the "Fruity Pebbled" mountains of my childhood.  My kids miss the rocky beauty of our Colorado vistas, but I have felt very much at home on this side of the mountains, where the leaves are vibrantly red, purple, orange and yellow.  I think something pumpkin-y is definitely going to have to be baked in my oven today!

In my last entry, we were anticipating chemotherapy treatment #16, which we thought would be the last for now so that Derek's body could have a break.  His original doctor in Colorado said he would never do more than 12 in a row because of the toll it would take on the body. The oncologist here chose to do 4 more because there were still enlarged areas and she felt that Derek could handle it.  She said that they would pull out one of the harshest chemicals, the oxalyplatin, do four more treaments, followed by another set of scans, and then just keep their eye on the growth (or lack thereof) of the cancer and evaluate where to go from there.  We went in for that appointment about 4 weeks ago and received two pieces of new information.  First of all, in a way that reinforced my incompatibility with his doctor, we were told that she had no intention of taking a break from the chemo.  She planned to just keep going until they couldn't do any more, even though Derek's neuropathy has continued to get worse and we worry about doing the permanent damage we were initially warned about in Colorado.  His current oncologist was unclear about what would determine the stopping time, although I think we soon realized what would likely dictate Derek's ability to continue treatments.

After a disturbing and frustrating discussion with his doctor, the nurses tested Derek's blood, which revealed that his platelet count was way lower than it should be to receive treatment.  It has been low since the beginning, but he has seemed so healthy in every other way that they have continued treatment anyway. Apparently they like that number to be above 90.  Derek's has been lower than that since his second treatment, but the lowest it had ever been was in the mid 70s.  On this day it was at a 52. No chemo! Derek asked if there was anything he could do to keep that count up, which reminded me that before they pulled out the oxalyplatin, they were giving him a shot after every treatment to somehow help his immune system bounce back.  They hadn't been giving him the shot and I asked if that was contributing to his platelet count being low.  The nurse said it had nothing to do with it and we would just have to wait for his bone marrow to start producing more platelets again.  It was a weird little rejection moment, because it is never fun to receive a chemo treatment, but Derek just wanted it over with.

Instead, he and I went to Phoenix for his annual work conference and after all his eating out and sitting in sessions, we returned a week later to try again to receive treatment #16.  He had gained 7 pounds, which was noteworthy because he eats and eats and can barely maintain his weight. We thought, "Wow! That is what an extra week without chemo will do for you!"  They again tested his blood and his platelet count was only up to a 63.  Another rejection week. The doctor who was filling in for his regular oncologist said no chemotherapy.  Last week he went in again and he was up to a 64, after a whole week.  This time the substitute oncologist decided they would go for it, because she knew that without that 16th treatment there would't be any new scans, and we were anxious to see what was going on internally.  I wasn't present for this appointment, but they went ahead and did the treatment and then somehow it came up that he was supposed to be receiving shots after all.  I don't know if this has anything to do with the struggle his bone marrow is having, because we are severely lacking in the information department and nobody was very helpful in answering Derek's questions about it that day, but he is now going into the office every day this week to receive some kind of shot.  Not very convenient for a busy City Manager, but apparently necessary nonetheless.

Basically, what I am getting at is that we have been repeatedly frustrated with the communication style of the current oncologist.  I have since gone through other means to get copies of the reports that were done of his previous scans and am concerned about some of the things I see written there that she has never talked to us about.  Derek has recognized that there has been a personality conflict between her and I since the beginning, but he is now agreeing that it could be much more than that.  We are not questioning her competence, we just need more information. Twice, in random ways, we have been given the same name of a different oncologist that we've been told we need to see for a second opinion.  We feel like it could be an answer to many prayers, for us to see this doctor.  It may simply be that he will validate for us that everything we are currently doing is right on, or maybe he will answer our questions in a way that hasn't been done, or perhaps he will see something differently and have another idea for how we should be treating Derek's cancer.  He will receive another CT scan on Friday and then we have an appointment next week with the other oncologist.  Hopefully we will have a clear idea of what to do after that.

As for everything else, we enjoyed our little trip together, and the kids did awesome at home on their own... we were proud of them. We've had more fun visits from friends and family and have other visits we are looking forward to.  Thank you so much to all of you for making us a part of your lives and your prayers.  We continue to feel loved and supported, and whenever I have a sad day I think of all of you who continue to press forward through your own trials with faith that you are becoming better as a result. We're just making the most of each day we have... not looking too far ahead, but making the steps we take as significant as we can, and hopefully going in the right direction.  It is what we came to this earth to do, right?! I'm just grateful to not be doing it alone.  I know that the burden of hard things can be carried by the Savior of the world, who has already made it possible if we will just allow Him to help us.  I have definitely felt the lifting of our burdens and am so grateful.