In the shadow...

... of impending chemo we are soldiering on as if our life is normal. And maybe this is "normal" as far as we are concerned... We managed to get in two soccer games in Butler this morning before the rains came hard and before 10:30am. whew... The boys played great and Dryden was begging to stay and help out a few other teams that didn't have enough players. However, Grandpa Hawn is here just for a few days so we decided to head out and hit First Watch (for the second time in two weeks...) for more huge chocolate chip pancakes and a lot of coffee in order to warm up. (yay! I'm about over sweating in the "fur hat"...)

Grandpa Hawn will be taking off early tomorrow morning and Grammy will be heading our way by tomorrow afternoon in order to be here with us through "chemo week". We are so thankful that she is able to take time off of her real life to help us through the worst of things. Sadly my tongue is just about 95% of normal right now so my expectations are low for this impending treatment. It makes it difficult to think about what is ahead for me. So many people are reminding me that I am halfway there after Tuesday but all that I keep thinking is, "I have just as far to go as I have already come". Does that make me a "glass half empty" kind of gal?? I hope not... I'm thinking that it makes me a realist and just kind of normally negative about the whole chemo experience. Basically, it sucks. Being bald sucks, feeling sick sucks, taking all kinds of medications sucks and hey... just having cancer sucks! However, I am fortunate that I am able to keep reminding myself through the negativity that God has a wonderful plan for my suffering. And, therefore, I am not suffering needlessly! Hooray! He knows what this all means and why it is all happening just as it is. He is certain about everything so I really don't need to waste a lot of time worrying about outcomes (statistics... are you happy, Janelle??) and pathways. (which doesn't mean that I never do, just that I don't HAVE to... you know, if I don't have time or whatever... ha ha)

We have some spectacular news in the midst of trial... Parker asked Jesus into his little 4 year-old heart! He, as you all have learned, is still struggling with the idea of Mom having cancer, chemo and surgeries but because of all of his struggles his heart is soft and welcoming to the Lord. The other night he was feeling particularly sad and we discussed how Jesus can come into your heart if you ask and fill the emptiness while giving you peace that you didn't know you could have in the midst of sadness (without necessarily taking away the reasons that you are sad... big concept for a small person but amazing the way the Holy Spirit translates it for them into something that they can grasp!). He said that he wanted to do that and so we did! He then spent the rest of the week telling teachers and friends and we will continue to nurture the idea in his growing heart and mind! yippee! No doubt he will still have many sad moments on this journey, but he is not walking it alone!

Matthew 19:14 Jesus said, "Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these."

Day by day

We are here just taking it day by day right now. Unfortunately my tongue continues to be a challenge and my tastes are not yet normal (this does not bode well for future treatments... I may just want to contact Ben & Jerry directly to find out if I can get something larger than a pint...). ugh is about all that I have to say about that. My energy level is pretty good - I even worked on weeding the pachysandra yesterday until my arm started aching (once your lymph nodes have been removed you need to be fairly careful about how much you use the involved arm - in my case my right arm... of course - because you can develop a condition called lymphedema, which once you contract is not curable but only manageable.) and I got nervous about doing too much. (and then today I noticed that my legs were sore too... guess that I haven't been working too hard lately!) But, with the beautiful weather that we have been having it was just great to be outside. Darin has been spending a lot of time working on our lawn as we are suddenly noticing that we really hadn't paid any attention to it for the entire summer... which isn't really surprising given the fact that we are noticing that we really didn't notice the summer... We have both mentioned to the kids on separate occasions that next summer we want to spend so much more time doing normal summer things (like going to the pool, riding bikes, hiking, picnicking, etc.) while Dryden told my friend Halley recently that this was the best summer ever! So much for parental instincts... ha ha. Although, it is likely that Dryden's response is related to the fact that they have been coddled and entertained by family and neighbors all summer long. So even though we feel that the summer was lost, I am grateful that their "summer of cancer" memories appear to be so happy!

I am starting to feel a lot more like "me" this week and I am anxious not to squander a single moment of it in the coming week. I am finding that I am much more task-oriented around the house and things that have been languishing since we moved in 18+ months ago are finally getting organized and finished. Apparently it is some strange form of cancer nesting that has me cleaning out closets, repurposing, reorganizing and generally just doing things that I meant to tackle long ago. It must all have something to do with the renewed purposefulness which seems to dictate our choices in these days since my diagnosis. It just seems easier to say "no" when we know that something might make things a little more hectic than we would like and we guard our family time when I am feeling healthy. We now tend to think "small" by addressing the issues that are right in front of us (and have been there forever but we were busy thinking "bigger picture" too often...) first. This is very much like what Pastor Rock talked about this morning in addressing "change and delay" in the life of a Christian. As much as we often dislike it, God usually institutes such things in order for us to grow in character, develop the skills we need for His larger purpose and so that we can see the things that are right in front of us that need to be finished up. We are there right now...

I also read something this week - some interview with Rick Warren of "Purpose Driven Life" fame (its been circulating around the internet for awhile now, you may have seen it) - that reminded me again why I am here and why we are taking this path... He says it this way:

"We were made by God and for God, and until you figure that out, life isn't going to make sense. Life is a series of problems: Either you are in one now, you're just coming out of one, or you're getting ready to go into another one. The reason for this is that God is more interested in your character than your comfort; God is more interested in making your life holy than He is in making your life happy."

"You can focus on your purposes, or you can focus on your problems: If you focus on your problems, you're going into self-centeredness, which is 'my problem, my issues, my pain.' But one of the easiest ways to get rid of pain is to get your focus off yourself and onto God and others."

God is more interested in our character than in our comfort... there is nothing more character-shaping than being uncomfortable (as I am learning!). And there is no better lesson to learn than to take your focus off of yourself and put it where it belongs - on Him. That idea is definitely harder for me since the comfort thing is something that I have no control over. The focus thing takes a conscious effort on my part to shift my thinking. Thankfully, I don't have to do it by will power or intestinal fortitude (goodness knows that my intestine can't take any more... ha ha... just a little chemo-humor for you there!). If I ask God to help me change my thinking... He will never say no.

Matthew 7:7-8 "Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives; he who seeks finds; and to him who knocks, the door will be opened."

the week in review...

So many thanks to everyone who has been praying, emailing, calling and wishing me well through another round of chemo-hell. It has been a rough week. (no surprise, really...) I felt as though the first 5 days were harder than last time (I was EXHAUSTED to an extent that I have never been before...) but my energy started to return a bit by Monday. However, the weird tongue stuff (it feels as though the whole thing was burned and it gets ulcers along the sides) and taste problems have carried on right through to today. I do feel like I am starting to feel a little bit of improvement, but this has been rough. Someone was asking me if I was craving anything and really... it doesn't matter because it all tastes bad!! It really gets difficult once you start to feel hungry again (for me, about Sunday night) because then food smells great but tastes awful. I have found that I can eat ice cream (it soothes my tongue and something about the mouth feel makes it bearable even if it doesn't taste exactly right) so I've been satisfying myself with pints of Ben & Jerry's and Starbucks (because, you know, a 5$ tub just wouldn't cut it!!). That definitely is not helpful for my healthy diet (I follow Janelle's amazing organic beef vegetable soup with a half a pint of ice cream for lunch every day...) or my waistline!! ugh.

This time around I didn't feel safe to drive until Monday although I did manage to get my exercise in every day. I look back and marvel at that because I was generally useless the rest of the time! The mental aspect of chemo is really very unnerving. I feel unfocused, unable to think clearly and just overall out-of-it. It is weird... I did have less headaches this time around and the pepcid truly did the job on the reflux. I also - praise the Lord for this - slept very well. You wake up a lot to use the restroom due to all of the fluids that they pump you with and the ones that you are instructed to drink to flush it all out, but I never had any trouble going back to sleep even when I was taking long naps every day. Thank you Lord!

Throughout all of this, I have obtained a true sense of appreciation for feeling good. You don't realize how badly you feel until you wake up one day and feel better... wow. I woke up on Monday just thanking the Lord for energy and for a more "normal" feeling. What a blessing to be able to recognize the gift of feeling healthy! That is something that I definitely took for granted in my pre-cancer life... I am slowly learning to take full advantage of the good days (and let me just say that the beautiful meals coming into our house are a big part of my ability to do that to the fullest! thank you, thank you!!). I don't want to waste any moments of feeling good. Oh how I wish that I could have back a lot of the time that I wasted before I knew that this was what was in store for me. It's more than just what I did during those times, it was my attitude, my outlook and my selfishness... in some ways I feel a little selfish now as I try to gather all of my hours to myself to love my children, my husband, my friends, my family and to drink in everything around me, but I guess that is a different kind of selfish. That's not to say that I haven't wasted time feeling sorry for myself now, but I am definitely starting to recognize the uselessness of that and the beauty of embracing each moment for what God has given me in that moment. Thank you Lord for opening my eyes and continuing to work on my heart... may I hear everything that You have for me in each day that You have given to us.

Parker continues to love school and seems to really be adjusting very well. He mentions now and again that he wishes that he didn't have to be away from me and Neely, but I don't think that it is interrupting his fun at school very much. Thank you for the prayers that you have offered for him, I know that they have been answered in abundance!

Audrey is off on her adventures home to Colorado, back to Edmonton and then to Australia. Please keep her travels in your prayers - mainly that she will have a fantastic time and not spend too much of it worrying about us! The kids are pretty upset that she would dare to leave us (nevermind that she never came for more than 10 days at a time prior to buying the condo and then all of this crashing down on us - which all happened within a few months of one another...) but her absence means that we will get to spend some time with Grammy and Grandpa Hawn. I have to admit that it is a little scary to not have her to lean on... I have definitely gotten used to that!

We are getting into the full swing of school days now as Dryden is into soccer, Parker is back at skating and both boys will be starting Kidz Krew (a local church program) tonight. I can't believe how busy our lives are when we feel like we have consciously made such an effort to slow them down... This is certainly another area for intense reflection because we want to make the most of the little lives that we have been entrusted with rather than make them so full that we never really pause to make sense of it all. However, it is really fun to watch them blossom in activities that they enjoy and it does make for some good family time (especially when Saturday morning soccer games are followed by gigantic FirstWatch chocolate chip pancakes!).

So, we are off into another chemo interlude praying for more strength, wisdom and patience as we navigate the cancer pathway. I am still investigating acupuncture as a method to control chemo side effects and plan to spend a lot of time enjoying "feeling better" before we have to do it all again.

Chemo #2

Yesterday was chemo day #2. Not as scary as the first time because you kind of know what is coming. I had my new port all ready and raring to go (OUCH!! even with the numbing cream it was a little painful... guess that we're not quite all healed up there just yet). It was at least a little bit comforting to know that I wasn't wrecking any small veins in my left arm. Although, it did occur to me - belatedly - that now I'm potentially wrecking my jugular vein. You know... the one that comes from my head... I kind of need that... However, when I talked to my awesome nurse, Sarah (just a little shout out to you there Sarah!) about that she said what I was assuming, that because the jugular is such a big vein it is not affected in nearly the same way as squeezing all of that poison through a small vein would be. Makes sense to me!

Praise the Lord that I did not have a reaction to the Taxotere. I also mentioned the magnitude of my headaches last time around so they switched me from the oral Zofran to an injectible antinausea medication that will supposedly do the same deal on the nausea but prevent the headaches. I did come home feeling a lot worse than last time and was in bed by 8:30 (home at 6pm because I switched my time so that I could be at school for Parker's first day... hence the picture above!). However, today has been... ok. I'm very tired, foggy, already started on the pepcid that they recommended for the chemo-induced reflux and harboring a mild headache (albeit nothing like last time). I got my Neulasta shot this afternoon and am expecting that things will go about like last time... not so good for Thursday, Friday & Saturday with a gradual easing off of symptoms as time goes on. I can tell that my taste buds are slowly checking out (as my water tastes funnier and funnier) but I need to try to eat less dairy this time around even though that is what tasted pretty good last time (it caused too much cramping and other digestive symptoms). Looks like I'm left with bread and hard boiled eggs (for a WEEK...), yum.

Another big praise is that Parker is LOVING school!! He has been saying for the past several weeks that he didn't want to go, that he wanted to stay home with me, etc. etc. and given that I am not going to be able to take him or pick him up for a week or so out of every month, I was a little worried about how he would adjust. However... all of those fantastic prayers are carrying him through and when Jodi brought him home today he bounded through the door and couldn't wait to tell me how much he loved it. Thank you Lord!!!!!

Dryden is getting ready for school pictures tomorrow but somehow his much needed haircut got lost in the shuffle and just today he knocked out his OTHER top front tooth (one was already out and working on it's neighboring tooth on the other side) at his friend Luke's house... maybe there won't be any first grade pictures of Dryden... ha ha

Neely is not enjoying the fact that everyone is gone in the mornings on Tuesday, Wednesday and Thursday (especially since Mom isn't really a barrel of laughs these days) but she is hyper-verbal and talking up a relentless storm about anything and everything. She has somehow outgrown the 10 pairs of beautiful size 5 shoes that were handed down to us (our loss is Ruby's gain, I guess...) and is becoming a little opinionated about what she is going to wear (COMPLETELY new territory for a mom of two boys who just lays out their clothes and says, "go get dressed").

And as all of this happens around me, I lose more hair, rest a lot and feel often like I am pretty much just missing out on life itself. I do know that this is a season and that this is what I need to be doing right now, but I feel like I should be doing so much more (i.e. what I'm usually doing!). I am no use to any one in need, I can't help any of the multitude of friends who are helping me and I'm just a "taker"... UGH. I feel like I can't be there for Darin, I'm barely there for the kids and I just spend a lot of time thinking about what's going on with me. Last week was so nice (feeling almost normal) but yet such a tease... The doctor who did my port (I'm sorry, his name escapes me - me the type A, attention to detail and whatnot person... chemo brain already! and I'm really trying to keep up with those crosswords and sudoku puzzles...), asked something to the effect of my feeling like things were really moving along in my treatment at this point and I had to tell him frankly... "no". I feel like it has barely started and as if time is almost standing still. However, it's God's time and His timing and whatever these next endless months hold will not come as any kind of shock to Him (even my attitude and inability to be paying closer attention to His plan... He's probably thinking that NOTHING will get this girl to sit up and stay focused!!). The only reassuring thing is that no matter how distressed I get, my faith remains. I know that the Lord has not abandoned me, nor will He. And, luckily for me, neither have my friends, neighbors, Bible study cohorts, church family, immediate and extended family and a whole host of people whom I haven't been in contact with for ages! WE ARE SO BLESSED to have each and every one of you! So, I will carry on, bad attitudes and all. Hopefully this round will not be any worse than the last, but if it is... so be it! This too shall pass...

Portal

...into my jugular vein... I'm not going to lie, it's weird. AND, you are awake for the whole thing (and in my case, asking more questions than you actually want the answers to...). My doc was so into educating me (which is great, really) that he took pictures on his iphone so that he could show me the actual wound site since it would be covered with a bandage when I left. He also agreed to let me remove my own stitches (which, in truth, means that Darin will be removing them because they are in an awkward location. I'll bet you're so thankful for that financial planning education that will help you through this, eh Love??), so he rocks!! I'm all about avoiding any extra trips to the hospital (from what I hear that is the prime locale to pick up the swine flu... ha ha. I'm just kidding - about being paranoid - it is the best place to get sick). So, the port thing went fine but it was very awkward (it is located right up under my clavicle and while I have plenty of suet on my lower half, my chest is devoid of it so "creating the pocket" in the chest adipose tissue consisted of planting it on top of my pectoralis muscle) and it is still quite sore. Especially when a wriggly little 21 month old keeps insisting that I "hold you me". (who can resist THAT??)

Grandma has been awesome (with some help from Halley, who apparently was on-call for the Hawns all weekend... you rock too Hal!) in caring for the kids and giving me my periodic "day of moping". I'm finding that every so often I need to take a day to be crabby and just feel sorry for myself. It sounds even more pathetic to put it into writing, but for some reason it is a necessary thing. I'm afraid that otherwise the self-pity would seep into too many other days and I would become overly self-absorbed and unbearable. Hopefully this way it is somewhat contained and I can quietly regain the perspective that I need to keep me focused on God's plan for Kristen's cancer and not get sidetracked by my humanity. There's a great Francesca Battistelli song (are you catching the theme here?? Everyone is getting a little annoyed at you now, Scott, for getting that ipod! ha ha) that has a chorus that says:

I’m letting go

Of the life I planned for me

And my dreams

Losing control

Of my destiny

Feels like I’m falling and that’s what it’s like to believe

So I’m letting go

...and that's how I've been feeling all along this journey. I held on tightly for awhile, but now I'm just letting go and letting God. Don't admire me, I love the Lord and in light of that, I don't really have any other choice. I'm not sure that I could've voluntarily done this (which is probably why I'm here... word to the wise!), but I have a feeling that seeking the center of His will in cancer is better than my best day as a healthy girl. A wise friend told me this morning of another friend with cancer who would often say, "I don't want to waste this cancer" and I echo those sentiments. Lord, don't let me waste this opportunity to truly live my life for you!

I send my little Parker J to 4-year-old preschool this Tuesday and he is struggling with the whole idea. Any new thing is a stretch for my little homebody and now it is complicated by cancer. Just this evening he was being a little wild while we were getting ready for bed and he accidentally smacked me in the eye. It really hurt and I doubled over, but the scary thing was the way that he burst into tears and said something to the effect of, "now I've made your cancer so much worse". To think that he believes that he can make things "worse" in this situation breaks my heart. He talks about my cancer every day and how he wishes that I didn't have it, how he doesn't understand why I have to have it and how he wants to use his special power of kissing (his Grammy once told him that his love of kissing babies - literally, if any baby comes into his radius of sight, it is getting kissed gently on the head - is a special power from God to make them happy) to help heal me. I just pray that he can get some peace in all of this and feel secure in God's love for him that can overcome all fear.

Dryden is just interested in my baldness and trying hard not to snicker about it. Neely likes to point to my wig and say "Mama's hair"... "put on". ha ha. What's difficult for me with her is to hear her say, every time that I put her down for a nap, "Mama west in Mama's bet" because she knows that I'm going to be resting too. Somehow it makes me feel like I am shirking my "mama" responsibilities by spending so much time resting. (and you could say that she'll never remember it, but since I was stupid enough to record it all for posterity she'll swear that she remembers every moment!) Regardless... they are treasures and have been a great source of strength and humor (and sometimes frustration... what is it with all of the bickering, don't they know that I have cancer??). We have, at long last, ordered a bevy of pictures of the little tykes to completely decorate our home (we've finally realized that fancy art is not us... family pictures are much more our style!). If you're looking for someone wonderful to photograph your family be sure to contact Andrea Shilling at Family Art Photography!! (couldn't resist that little shout out... she truly is awesome!) So now we'll be surrounded by their crazy little smiles at every turn. I think that it will be perfect.