When the Patient Becomes the Teacher

There is a song that we sing in church that I am not particularly fond of. Not because the words are not true, but because it's largely the same words over, and over, and over again. The song is "God I'm Amazed By You", by Lincoln Brewster. I am now confident that we can (and maybe should) just stop at the title. 

The Background: Since late June/early July, Julie has been struggling with severe hives. Big, honkin', red, all over you body welt-like hives. Not pretty, and extremely uncomfortable. They have been severe enough to cause serious concern about her throat closing. Since then, she has seen about 7 doctors, stopped taking all endocrine/hormonal therapy drugs, all other post-chemo drugs, all vitamins, and walks around with epi pens in her purse. Just in case. She has added a cadre of antihistamines (4 at last count) and heavy doses of prednisone (ugly steroid), topical steroid, and another oral steroid...all to very little benefit.

The Prognosis: All those doctors have all said about the same thing: "we really don't know much about what causes hives, and really don't have any idea what is causing yours." Her oncologist said that out of over 2,000 patients she has treated for cancer, she has only had 2 that have had "immune issues resulting from chemotherapy", and only one that has had hives (that one being Julie). Her theory, however, was that she was allergic to a drug that Julie switched to once she started taking tamoxifen. 

The Process: One thing that was very interesting in this process was watching all the doctors and how they interacted. The oncologist had one perspective. The immunologist a different one. The internal medicine (GP) had his own theory, the dermatologist another. And, they all had different treatments. One was trying to get to the root cause, another to address the symptoms, and another to just help with dealing with the reality of swelling and itching all the time.

The God Story: This past Thursday, we went back to the oncologist for another visit. For the first time in nearly 4 months, her hives have started to abate. The theory of the allergic reaction to one drug seems to be correct, although we need to wait another month to make sure. During this whole process, I've prayed like I've never prayed before. I've prayed over her every night, laid hands on her, had prayer teams pray over her, had those gifted in healing pray over her...all to no avail. It's been very frustrating, and at times has tried my resolve and confidence in prayer. God, are you there? Are you listening? Do you care? How about a little break here!

As we were standing in the doorway of the patient room, saying goodbye and thank you to Dr. Kim, she paused and said something quite profound. She said that this was a very difficult case, one she had not seen, and in consulting with the other doctors, one they had not seen. She looked at us and said that Julie has been able to teach them - teach them to work better together, teach them how to look for this issue and how help other people who might have it. "We are the students and you have been the teacher", she said.

Then, while walking out to the car, it hit us both. At the same time. This journey we are on is not about us (surprise, surprise). These awful hives and their side effects are not about us. We have declared that we are His and have committed ourselves to do what He calls us to do, even when that's not fun, comfortable or easy. 

It "not being about us" is a feeling we have had from the very beginning of this cancer journey. And God has shown himself, once again, to be sovereign. To have the situation under control. To have a higher and better purpose than we could imagine. To make "good lemonade" out of the "bad lemons" that come because of sin.

And, we are humbled to be part of someone else's journey. To be used by God to reach others in ways we could never ask or imagine. God, I'm amazed by you. God I'm amazed by you. God I'm amazed by you... Yeah, we can just stop at the title.

Not Fair

Waldo Canyon Fire (taken from my back yard)

So much for good intentions. I had every good intention of faithfully keeping up on this blog, but to no avail. Life got in the way. Again. A very quick update on the family:

Much has happened since May. Colorado Springs had the most damaging wild fires in Colorado history where nearly 350 homes were burned to the ground. 25% of the families at my office were evacuated and over 200 people in our church lost their homes. 

We've struggled with numerous side effects from Julie's chemotherapy. Julie has been battling severe hives since July and the doctor has taken her off every medication she was on, even tamoxifen. She has been on heavy doses of steroids because its the only thing that keeps the hives at bay. When I say severe, I am not exaggerating - huge welts all over her body, and sometimes so severe her face is swollen, eyes almost swollen shut and they move to her throat. We've had one trip to the emergency room, and several times when we probably should have gone. She now carries an Epi-Pen everywhere she goes. Steroids, while helpful with hives, are evil.

Since May Hannah has started 8th grade, has grown physically, mentally and emotionally, and has, on occasion, been mistaken for a college student. Dads will understand my extreme anxiety. Sarah is off to college at TCU in Fort Worth, Texas. She is growing in amazing ways, but misses home and the steadiness and predictability of family. We are heading to Ft. Worth for family weekend very soon and we are all very excited. Lastly, Jake, our dog of 11 years, is not doing well. He is, for the most part, paralyzed in his back legs and struggles getting anywhere. It's sad to see him in this state, but his spirit is happy and he still limps (and carried a lot) around and lays next to Julie wherever she is.

Now, back the headline of this post...not fair. I hate cancer. I hate what it does to people who have it and to families who support those who have it. It's an insidious disease. Within the last two weeks we have lost two friends to cancer, one who was battling pancreatic cancer for 4 years and who also lost their home in the Waldo Canyon Fire, and a 16 year-old girl who had leukemia. 

I just found yesterday that a good friend's daughter has a recurrence. This particular family has had way more than their fair share. In the last two years, their daughter has gone through hell on earth to remove a tumor from her leg, and her most recent PET scan shows the cancer has returned in her lung. She is 16. Please pray for them. He is recovering from throat cancer. His mother-in-law recently passed away from cancer, and his mother is in hospice, dying from cancer. Why? 

Why is all this heaped on one family? Why do those who smoke, drink, eat poorly and never exercise have no issues and those who "do what they are supposed to" get sick and die?  Why? It's just not fair.

The parent in me has the pat response, "well, life's not fair". But that is too shallow and frankly not very helpful. The truth is, I, nor you have answers to those questions. And, while I do not know the answers to these most difficult of questions, I do know one thing. God hates cancer too. He hates the sin that keeps us from the perfect relationship he designed and created. He hates that we have to suffer. 

Yet, somewhat paradoxically, He loves us more than we can imagine. He turns what Satan means for evil into good. He shows us that every situation, good, bad, and ugly can be used by us to grow in our relationship with Him. Why does He do it this way?  I have no idea. But, as Job (finally) said, who am I to question God?  Some day — thanks to the work that Jesus did on the cross, taking on the ultimate sacrifice of carrying all of our sins (past, present and future) and defeating sin, death and the power of the devil — Some day, it won't matter. Because some day we will be with Him in perfect unity and there will be no more pain, tears, cancer, fires, anxiety, hurt. Some day.

But, until that day, we have to figure out a way to persevere, to deal with the crud that comes with a fallen world. I have found only one way to survive, and dare I say thrive in the midst of this imperfect yet beautiful world: stay close to Jesus, and surround yourself with the family of believers who understand that we are not home yet.

No, life is not fair. Nobody said it was going to be. But we do have each other, and we do have Jesus. And that is more than good enough.

Too Fast

Every parent says it. Every kid loathes it. But, its true.  Life goes by so quickly. Before you blink, your kids are off to college, or getting married, or having kids of their own. 

When I was young, I always wanted to be older than I was. I was born in June. If you asked me how old I was, say in August, when I was 7, I'd say, "I'll be 8 next year". If you asked me that same question in February, I'd say, "I'm almost 8". I'm not sure why, its just how I was. Now, I wish I could suspend time at opportune moments. 

Last night we went to a friend's 50th birthday party. We had a great time and I got to see many friends who I used to work with 10 years ago. It brought back the reality that life goes by very, very quickly. Phrases like "the last time I saw her was she she was 2!" or "He graduated from college yesterday?" were common. It got me reflecting on our own situation.

The past year has been exceedingly difficult. Yet, life goes on — time marches forward. Sarah had her last day of high-school on Friday. Her last day of high-school. And, yes, I can still remember holding her on my arm, walking her up and down the hallway of our tiny townhouse in Chicago, trying to get her to go to sleep. Hannah will finish middle school in a year. Yes, "perfect baby" is almost a high-schooler. Yikes.

The past year has taught us a very valuable lesson - little things matter. People are more important than things. We need to stop, slow down and embrace and enjoy all that life throws us. When you are going through the "cancer process", you have a good excuse to do all those things, and people are gracious and expect you to do so. 

Now that life is getting back to normal (whatever that is), I find myself slipping back into old habits. Spending more time at work, mixing up my priorities, and not doing those things that really matter - pausing to listen...taking time to explain something...being available to provide little things (like doing the dishes, or cleaning, or killing moths)...or, just being together and enjoying each other's company. 

The more things get back to normal, the more I long for having an "excuse" for slowing down and focusing on the things that matter. The reality is, I don't need an excuse. I just need to do it. My prayer is that we would all be able to do it - and it needs to start with taking time to be with the Lord - to let him refresh us, renew us, and grow us. All things flow from that...the Lord first, spouse second, kids/family third, and whatever you want after that. May the Lord equip me and give me the strength to do just that.

On the personal front, Sarah's graduation ceremony is this Wednesday...her graduation party on the 3rd of June... then we take her to TCU on the 7th of August...then, well, sigh. Hannah has her end-of-the-year dance performance on the 2nd of June - and we have lots  of family coming in for it (and the graduation party). It will be the first time many people will have seen Julie since her diagnosis.  We are really looking forward to it! Then, in July, we get together with my sisters and all the kids for a weekend in Estes Park. 

Maybe, just maybe, life will slow down just enough for us to capture those moments that matter...Maybe.

Blessings to all!

Let Go and Enjoy The Journey

I have been remiss. OK, I have been very remiss. So, let me apologize to everyone following this blog - I have made a commitment to be more consistent! In the midst of the "fire" of managing life when Julie was going through chemo, I managed to find plenty of time to update everyone and write this blog.  Not so much now that life has gotten "back to normal". 


Actually, "new normal" would be a more accurate statement. Much has happened since the end of chemo (late December of 2011). We all felt like we needed a huge breather,  yet it was not to be. The past 4 months have had a new set of challenges - nothing near what we have emotionally and physically been through, but we were kinda hoping for 180 degree turnaround. Between Julie's recovery, emotionally processing what "survival" looks like, significant challenges at my work, the emotional and financial roller coaster of selecting a college for Sarah, medical challenges for our parents...it's been...well, just hard.


However, we are (continually) learning not to look at our circumstances. Circumstances will drive us mad. When we focus on our situation, we whirl, spin, worry, fuss, cry and carry around a big bucket of angst. We must look at the Lord, for His yoke is easy and His burden light. He knows the end of the story - he knows the path to sharpen us and make us more like Jesus. He knows what we need to grow and what we can handle and how we might have the honor to impact others through our difficult circumstances. 


I liken it to the game of golf. If you have ever played the game, you know that there are, literally, 200 things that you can have your mind processing at any point in time. Ball position - just off right heel. Weight slightly on left side. Grip the club lightly, like your holding a bird. Wind coming from the right. Keep left arm straight. Hit down on the ball. Keep left wrist firm. Point club to the target at top of swing. Swing to parallel, but not past. Swing smooth - easy tempo. Shift your weight to the right. Coil around your left leg. Extend your backswing. Drive your hips. Make a big shoulder turn. Extend down the target line. Clear your hips. Keep your head down. Keep your head down. Keep your head down. All this, and you haven't even hit the stupid ball yet!


If you try to focus on that list, you will likely not even hit the ball - you will be paralyzed from too much information. At some point (after you have learned the basics), you just have to trust your swing. Sometimes it works out good. Sometimes not. But in the end, trusting your swing allows you to enjoy the game - enjoy the people you are with, the beauty of the course, hear the sounds, smell the smells, see the sights - even if the scorecard doesn't show what you'd wish. But, you have to trust your swing. Our relationship with God is much the same - we have to trust Him - or else we can't enjoy life this side of heaven.


Post chemo, Julie has gone through an emotional mountain climb. Now that her head is clear from the chemo (mostly at least), she's in a place where she is going back over every detail of her diagnosis, surgery, care, recovery, chemo, etc. and asking herself "why?" a lot. A lot. She has done hours and hours and hours of research on what caused it, asked "why me", asked "could it have been prevented?", researched what can help prevent it from coming back, and processed a thousand other questions. There is so much information overload - so much that it can be paralyzing. We are to a point where we are trying to just let go of the past - give it to Jesus - and get on with, and enjoy, the future.


There seems to, once again, be light at the end of the tunnel. God is good, in the midst of the fire. Julie is doing very good. Her spirits are up, she is becoming a Pilates expert, and her hair is rapidly growing back...growing in some funky patterns, but growing back nonetheless. Hair = Happy. 


We had a great time at Disneyland celebrating getting through cancer to this point.  Here is a picture (and the first one published of Julie since she cut her hair back in September) of our adventure:

Things at work are slowly picking up, and Sarah has decided on where she will be living and studying the next four years. She has chosen TCU (Texas Christian University) - which is in Fort Worth, TX. 786 miles, 12.3245 hour drive (not that I've calculated it or anything). Hannah is doing awesome and is looking forward to her end of the year dance performance on June 2. 


We also got a good report from the oncologist. We had our first post chemo visit two weeks ago, and all signs are good and her blood counts are all moving in the right direction. The final reconstruction surgery is scheduled for next friday. We will have oncologist visits every 90 days for the first two years. They can make one a bit anxious, so that is a good prayer point.  Our next visit is scheduled in early July.


We covet your prayers and friendship.  Thank you all for being so faithful! Remember...Jesus loves you this I know, for the Bible tells me so! He loves you more than you can imagine. He loves you just the way you are, but also loves you too much to let you stay there.  Let go and enjoy the journey!

It's HOT in here

When I was a teenager, my mother went through two very difficult events: she went through menopause and she stopped smoking cigarettes. At the same time.


I'm gonna let that sink in for a minute. 


For the better part of 2 years, I came up with about every excuse to not be at home. Not because I didn't like home, or love my parents. While I may not be the brightest bulb in the pack, I was smart enough to sense that a teenage boy who is growing hormones, and a 50-something year old woman who is losing hormones just don't mix very well.


For any of you who have done it, stopping smoking is incredibly difficult. The brain chemistry changes when you smoke. And since nicotine is addictive, your brain, and therefore your body, rebels when it doesn't get what it wants. It makes you irritable to say the least.


During menopause (no news flash here for those of you who have gone through it) the ovaries start shutting down and the body produces less estrogen, which causes, well, some uncomfortable side effects. 


Chemotherapy, for most women, shuts down the ovaries, throwing the patient into menopause. And while there are some decent medications on the market to counter the drop in estrogen (and to a lesser extent progesterone), those things are a definite no-no for  estrogen/progesterone positive cancer patients. We want to suppress estrogen to minimize cancer recurrence.  Add to that the drug tamoxifen which has menopausal like effects and you have, well, you have, umm, you have - yuk.


Parents who bring their first child home are known to say "I wish they had a manual on how to take care of and raise this 'thing' that is now in my house". Husbands of menopausal wives wish there a similar manual on how to "care for" the menopausal spouse. Here are just of few samples of what's going on in our house right now.

• Night sweats. These are really fun. Go to bed, its 17 degrees outside, the heat in our house is on like 63 degrees. Everyone is bundled up in sweaters and blankets. Julie is 95% naked, literally throwing covers off. Then ten minutes later, "Honey, will you cover me up, I'm cold". And I'm thinking to myself, "are you crazy? Cover you up?"
• Day sweats. Not quite as fun as night sweats but still fun. In the kitchen cooking, stop to take off any clothing that isn't absolutely necessary, fanning yourself, sticking your head out the back door into the winter air...back to cooking after toweling yourself off.
• Unpredictable irritability. I'm gonna just assume everyone can visualize this one.
• Inability to sleep - including getting up 10-12 times a night. (Which just may contribute to the irritability thing.)
• Inability to process and deal with things that your brain (and heart) says you should be able to deal with, but you just can't.
• Dryness of skin, (and other female areas), aches & pains, general uncomfortableness

I have no idea what we are going to do in the summer!

The hard part for both Julie and I is the reality that you go through the challenge of learning about cancer, have multiple surgeries, endure chemotherapy, have reconstructive surgery and come out on the other side thinking that the hard part is over - it's time to get into a new season. And the reality of the new season is that it has it's own significant challenges.

All in all, Julie is doing well. Her hair is growing, her strength is returning, her heart and attitude are in a great place. We are all very excited about taking Spring Break as a family to celebrate her survival. We are going to Disneyland the last week in March and are very much looking forward to relaxing and celebrating.

In terms of ongoing care, we had an appointment yesterday with the oncology nurse practitioner for what was called the "survivor meeting". Julie got to share some of her challenges and successes, and got lots of information on resources to help her through the next phase in her recovery. 

We will have regular meetings (every 3 months) with the oncologist for the next two years. She will have blood tests and physical exams to keep a close eye on her recovery and to ensure there is no recurrence of cancer. From what we have been told, the greatest chance of recurrence is in the first 2 years, so we need to keep a watchful eye.

Thank you all for your continued prayer and support. Onward and upward!

Progress

Its been too long, or so I've been told.  I have had many requests to continue this blog, and so, I am succumbing to the pressure :-)


There have been several things happening in Julie's recovery process, and all are going well, praise the Lord.  On Friday the 20th of January, Julie went in for reconstructive surgery - the purpose was to remove the expanders that were put in immediately after her mastectomy, and replace them with normal, gel implants. 


The surgery went well, although its clear that Julie's body is working hard at healing itself. The plastic surgeon had a bit of difficulty removing the old expanders as her body had started to "absorb" the foreign material and was adhering to the expanders. He had to detach almost 80% of her pectoral  muscles to get the old ones out and the new ones in, but at the end of the day, it went very well and she is on the road to recovery. (Yes, he reattached them.)


It was very hard on me because I was not at the surgery - I was traveling for work. This was the first thing that we have not done together.  Thankfully her mom, Katy, came to stay with the girls for about 10 days and was an enormous help.


So, lets talk about the important stuff: hair. Much to her joy, Julie's hair is starting to grow back — slowly, but growing nonetheless. Its actually starting to get soft and soon her head will no longer be cold! Its a bit bitter sweet for me because she is so beautiful right now, I don't want anything to change.


I've had a lot of questions lately about her (and the family's) state of mind.  I would sum those emotions up as relieved and encouraged. We are very grateful for God's provision and his strength in getting Julie through 3 surgeries, 6 months of chemo and countless side effects. Julie is happy and excited about her recovery and getting back to some normalcy in life.  We have felt strengthened by the countless prayers and support of friends, family, (and complete strangers) and are looking forward to living life to the fullest going forward.


We are trying to figure out what to do for Spring break - we'd like to get away with just the 4 of us for a celebration and a time to catch our collective breaths and talk about what the next year holds for us as a family. There are other big changes on the horizon, with Sarah soon heading off to college and Hannah becoming a teenager later this year...


From here, there will be visits to the oncologist every three months for blood tests and exams. Julie has started endocrine therapy (tamoxifen) and starting Pilates, and of course, closely watching her diet.  There are also other changes regarding cosmetics and other environmental things that she will be researching and making changes to in order to minimize any potential chance of recurrence.


Thank you all, again, for your prayers and support. And look for more waxing eloquent in future posts!

Rear View Mirror

It would be an understatement to say we are happy that the year 2011 is in our rear view mirror.

I distinctly remember May 1987, having just graduated from college and driving back to Chicago, crossing the Illinois river and being very happy that Peoria was in my rear view mirror. I quietly said to myself "I'll never go back there..."  Little did I know that God had different plans. In fact, in October of 1990, I was back there — getting married to the woman God had specially picked out for me.


Ah, the best laid plans of mice and men.  Or as Solomon said it in Proverbs 16:9 - "In his heart, a mans plans his course, but God determines his steps."


As Julie and I initially reflect upon 2011, it was a terrible year. Probably better said, a very difficult year.  Probably the most difficult year that either of us have had to endure. Cancer and all that comes with it are at the top of the list. Yet, upon deeper reflection, 2011 was also an amazing year.


I am wont to compare things - and am constantly making virtual "Ben Franklins". For those of you not familiar with a Ben Franklin, it is a list; a list with good things (pros) listed on one side, and bad things (cons) listed on the other that are then used to compare if the good outweighs the bad. If it does, you move forward with whatever it is you are evaluating. If not, you should think twice about moving forward with it. So, because its my nature, here is the Ben Franklin for the year 2011.

The Bad:

June (was there anything that happened before June?) - Julie finds lump in her left breast on a Friday, about 12 hours before we leave for Hawaii. 4 days later, she is diagnosed with breast cancer.


July - we interview and meet with what feels like a dozen doctors (breast surgeons, oncologists, reconstructive surgeons, general surgeons, anesthesiologists). Julie starts the long process of eradicating the cancer from her body, starting with double mastectomy surgery, and removal of 15 lymph nodes, one of which has cancer. We rush back to the hospital one day after coming home due to a spinal headache.


August - Julie recovers from surgery, finally has drains removed, starts the very painful process of finding and buying wigs for the inevitable loss of hair. We get the final diagnosis - stage IIB cancer that has metastasized. Julie also has a second surgery to remove "positive margin" around where the tumor was. This triggers 3 steps backwards for the reconstructive process. We have about 237 doctor appointments preparing for the next steps.


September - Chemo begins. Julie starts her every three week regiment for chemotherapy. Julie's hair falls out. She cries. A lot. Several significant issues appear at work for Steve and managing them plus what's going on at home is increasingly difficult.


October - we hit the "50% done" mark with chemo.  Managing life becomes harder and harder. Julie's body is being pummeled by the drugs as the "therapy" kills good cells and bad cells alike. The drugs to minimize the side effects need drugs to minimize the side effects of the side effect drugs.


November - We continue to slog through chemo.  Deadlines arrive for applications for colleges for Sarah. Work, home, college preparation, middle school, senior year in high-school, the physicality of drugs and the process is wearing emotionally and physically.


December - the end of chemo is in sight, two more treatments of tearing down, then begins the process of recovery and building back up.  While its only been 6 months, it feels like 6 years.

The Good:

The good doesn't seem to follow a prescribed time line.  We are blessed in amazing ways. Our dear friends the Ewings created a care calendar for people to sign up to bring us food and yard help.  We are blessed by so many families with amazing meals that arrive just when we need them. Many thanks to these families (and I am sure I am missing some): Marble, Ewing, Wrights, Rice, Zablocki, Lloyd, Mendrop, Warren, Kuyper, Lee, Moore, Beebe, Grant, Wilson, Ankrum, Reca, Palmer, Fabatz, Filiatrault, Kyle, Kovach, Santos, Neville, Rubin, Maher, Roche, Deichman, Mayer, Ball, Weary, Carter, Johnson, Hoyle, Salas, Lane, Mauro, Crow, Meleski, Monahan, Hermstad, and I know many others.


We are blessed to see the body of Christ in action. Prayers by literally thousands of people around the globe, many whom we don't even know. Emails of encouragement, words of wisdom, thoughts, practical help...it's amazing how many people come around us. We know we are experiencing a literal slice of heaven here on earth.


Julie and I spend a lot of time in the Word, praying with each other, praying for each other, growing closer to the Lord in ways I could never really explain - at least this side of heaven. We have done everything together the past 6 months, gone to every doctor visit, every treatment. It has been wonderful to just be with her, hold her hand, help her, pray with her.  We have grown closer that I could ever imagine. We have also grown closer as a family - with everyone having to pitch in to help with the every day things of life.  One thing is sure - I make a lousy mom!


Julie has done an enormous amount of research. Research on the recovery process, food, how to minimize recurrence,  how to grow hair :-)  Interestingly, all this is part of her passion for food and health, so she is learning what she loves to learn.


All in all - it has been exceedingly difficult. The road ahead is bright, but there is much yet to do. Julie has to finish her reconstruction, her hair has to grow back, she has 5-10 years of endocrine therapy, and we have to trust that the cancer is gone and won't come back. She has follow up appointments every 3 months for the next two years, then every 6 months for a year, then once per year once she hits 3 years cancer free.


In terms of the Ben Franklin; there is no way you would ever wish this on anyone. And, having gone through most of it, we would both say we wouldn't ever want to go through it again. Yet, there is so much good that has come out of it. For whatever reason, God chooses to use these situations that are part of a fallen world to grow us. We have grown in ways that we would never have grown without going through what we have gone through. We have deepened relationships, met new friends, and have gotten to focus on the things that are truly important in life - growing more like Christ and loving and serving others. So, all in all, in the end, the good outweighs the bad. God wins, and we are better for the experiences we have had. To Him be the glory, forever and ever.


This blog has been a huge blessing for both Julie and I - and we intend to keep on posting throughout 2012 as a way to keep everyone up to speed on Julie's recovery and share whatever the Lord puts on our hearts. 


It is impossible to thank everyone for all your kindness, support, prayer and support.  We know it's inadequate, but thank you from the bottom of our hearts. We love you all!


We are looking forward to 2012!


Julie and Steve