Tuesday, November 27, 2012

Legacy

Many of you are aware of the recent developments in our journey with cancer. But, just in case you aren't, here's the story:

       Pete started on hospice about a week ago after we decided we needed to streamline his care. We were tired of having to complete nothing short of a circus act every time he needed a prescription refilled or a test ordered. So, we decided to initiate hospice so that we could have one point of contact and in hopes that we might be able to find someone with a better plan for managing his pain than all the other doctors had in the past. So, here we are, sorta at the end of the rope, so-to-speak. Although it's difficult to digest, it's also a little freeing and I think Pete would agree. I finally feel like we can really start living, although it may be near the end, instead of constantly striving to find a cure, that likely isn't going to be found. We were both tired of hitting brick walls, of being told "no, we can't", and of being given false hope. If you've ever experienced anything remotely close to our situation, you know it is ALL consuming; emotionally, mentally, and physically draining. You constantly feel as though you have to be one step ahead, in order to control the circumstances. However, no one really ever tells you straight out that you're not in control. They just allow you to keep pushing and pretend like it's all going to be okay. At least, this is what we experienced within the medical community. Now, finally on hospice, we can breath. We can look forward to our remaining days together and doing our best to fill those days with love, lasting memories, and laughter.
      As I said before, this journey has been all consuming and that's not to say, with the start of hospice care, it still isn't. It just is in it's own way. There have been many times that I have pretended to be okay, but really I'm just masking my emotions. There are times, even still, when it all seems like a dream and then I snap back to reality. I remember that I have to wake up to a hospital bed which takes up the majority of the living space to the right of what was once OUR bed. And I take one look at my husband's emaciated body and realize he's not the man I married in his entirety; the disease has overtaken the man he once was. And then my thoughts come back to my children. I remember that there will be a day when their father's voice will no longer resonate among the walls of this house. And, again, I realize this is our reality.
       Last Sunday at church my emotions took over. We were told to take some time in prayer to come before God. All I could think of was that I hoped I would be able to fully honor Pete's legacy in the years to come, long after he's gone. I thought back to our "Family Mission Statement" that Pete painstakingly wrote for our family while Izzy was still in the womb. He made it a point to explain that we would always show the love of the Lord to everyone, wheresoever we shall dwell. I wondered if I would be able to do that. Would I be able to teach my kids how to love everyone like their daddy has? Would I be able to break away from the mainstream culture to allow my kids to experience the life Pete and I had imagined for them? Or would I allow them to lose themselves in a constant stream of movies, video games, and pointless activities in order to cope with our loss? These were all questions that I agonized over while I sat there, with tears streaming down, head bowed before the Lord.
       And unlike cancer, these are all things I have control over. The way our children spend their time. Who they interact with. Whether or not I model God's love for others for them.
       I've lived long enough to know that we're all human, and I'll likely make mistakes in the years to come, however, I'm very grateful for the legacy my husband, their daddy, will leave. I am also honored (and a little scared) to have the opportunity to carry it on.
       While putting Izzy to bed tonight, I succumbed to her story request. I came up with a little story about magic baking elves who surprised a very poor family with yummy treats during the holiday season, when otherwise they would have had nothing. In the end, the family divvied up their yummy treats and shared them with their neighbors. Then the following bible verse came to mind (Thanks Mom!): "When someone has been given much, much will be required in return; and when someone has been entrusted with much, even more will be required." Luke 12:48.

And then I realized, the story and the verse were as much meant for me as they were for her. 

Saturday, November 17, 2012

A Daddy's Love

As I was cleaning the house in preparation for Pete's homecoming from his Dad's this afternoon, I sat down for a minute while the floors dried (ok, I know I'm a little obsessive about the house being perfectly clean!), and my eyes fell upon our Shutterfly memory books I have compiled of our adventures over the past couple of years. As I went through them one by one, I was amazed by how much times have changed. I was also reminded of the wonderful adventures we've experienced as a family. There are times when it all seems like a dream but then I look at those special photos and my memories are overflowing once again. I am filled with awe and amazement as well as a bit of envy for those times that have passed. Then I wonder why things aren't as simple as they once were.

What I see the most are the memories Izzy has shared with her daddy and I am thankful that those have been captured through photos. I see her actions in each and every one of those photos that mirror her daddy's spirit; a spirit of adventure she will carry on with her through the rest of her life. I also see the fullness of love that her daddy has for her. I witness it in all the photos in which he is with her and I hope and pray that she remembers the special connection they share. 

This all makes me ever so grateful for what her daddy is to her. He fills a role that I wonder if I will be able to fill. He is the ultimate storyteller, the most genuine friend, and the undivided attention giver. The truth is that there may come a day when she may not remember the specifics of her and her daddy's interactions but it is my hope that I will be able to make those memories live on for her. As a mommy, it is always our most innate desire to protect our children from hurt and pain, however in this instance, I have no control over that. I can only hope to ensure that our little Izzy understands the ultimate love her daddy has for her and will always have for her. 

There are so many unknowns in this life and there will always be so many unanswered questions during our time on this earth, however our God is bigger and his love for us is bigger than anything we will ever know. I am so thankful that our precious Izzy has her earthly daddy's love for her as a mirror for what her heavenly Father's love is like. And in the end, I think that is the only thing that matters because there is nothing I can do to change any of this story, it just is as it is. But I am so eternally grateful for Izzy's daddy and who he is to her and although this story may not turn out as we planned, I know she will always be as well. 

Tuesday, October 16, 2012

Hey Mr. Tambourine Man

I am, as Bob Dylan suggests, much akin to an exhausted narrator of a dreamy tale to which I seek an answer of how to escape, unable to sleep yet wandering sleepily as if in a dream after someone playing a tune like the pied-piper who I somehow know in my heart-of-hearts has the answer I seek entwined in his song but my weariness is so profound that try as I might, I cannot catch up to him to be freed through knowing it's words. My days are more nightmarish than many of my nights which at least bring some hours of deep, dreamless and yet unrestful sleep provided by any one of many versions of benzodiazepines. As of late, when my days aren't filled with experiences of learning how to reteach a lung how to perform oxygen exchange again after being half choked with foreign fluid and the searing pain of trying to re-inflate it, I can still try to enjoy a semi-joy filled life with my family. It's true the latest episode of "draining" the fluid from between the pleural spaces (the liquid isn't actually in the lung itself, it's between the two pleura; the parietal and visceral), which prevents the lung from fully expanding, this last time being 50% full, was much more traumatic than the last. Neither was anywhere near pleasant since I had a bad reaction before the actual procedure began last time too. This gave me the opportunity to know what a collapsed lung feels like when they were almost finished draining the 3 liters I had sloshing around in there, I began coughing uncontrollably and painfully as I hyperventilated at the same time but was gasping for air I couldn't get because the lung was completely collapsed and took almost 2 hours of coughing and gasping for it to get it mostly inflated yet still some fluid did develop in my lung and I continued to cough painfully and gasp my way through the rest of the night coughing up the left over fluid. I can only just now breathe fully but with pain still stabbing in my side and tightening worse if I bend over or need to cough. I just hope this too fades and doesn't become the norm. All they can do is perform either a thoracoscopy with talc pleurodesis (which "blows" talcum powder between the pleural layers to cause scarring, thus binding the two layers together to prevent fluid from building), or inserting a permanent 'drain' to thus empty the fluid as needed wherever I am. Hmm, decisions decisions... We speak with an interventional radiologist tomorrow to discuss options. A normal day in the life: what kind of tube should I stick in my chest?!

Alysha did a good job of filling in what's transpired in the last few weeks as i've been a sociophobe and have avoided writing to anyone. To that I apologize for. I've preferred the altered reality of fiction novels to set my mind into another time and place so I don't have to confront my own present reality. It's easy to describe the few days that have been truly horrible and make it sound like a daily occurrence, which it isn't, yet as Alysha mentioned, most days are still filled with almost unbearable pain which I attempt to just muscle through so my kids can enjoy their life even though mine is hard to to picture as enjoyable if I can't focus past the pain and discomfort that adhere to me and invade my mind, body and soul. Still, most people can't believe how well I look when they see me. I am glad I can still be perceived to look healthy and vivrant, though mostly am biting back twinges of pain at every move and masking the odd sensations I can only begin to describe of being freezing yet overheated and sweating at the same time. Aside from the aches and pains, again, Bob Dylan nails it with the line of how: "my weariness amazes me," embodying the acute speed in which I now live due to mental and physical fatigue. From that same lyric string, the answers i've sought to find a direction in which I can follow to get me through this bloody confusing mess of a disease and the treatment we've followed and continue to seek answers from but get only riddles and attempts of cajoling contentment without anyone stating outright that they're treating me as a terminal case, which they do, echo what Dylan jangled on about how the answers to my conundrum of a life 'vanish from my hand', leaving me standing there blindly "but still not sleeping."

Being "branded on my feet," as Dylan sings on, is exactly how I feel when I want to run out to fight it bluntly but am left swinging wildly at nothing but my own infinite anger. My feet don't move and every ounce of energy drains from my body just from the thought and initial impulse to move. All my joints ache, my breathing is labored and with every breath, pain shoots from under my left armpit through my ribs and into a sharp jab in my side and strangely right behind my heart as if the cancer is trying to strangle that as well. I'm defeated before I take my first step. I feel like collapsing into the miserable sorry heap that I feel like and crawling away somewhere dark to curl up and hide from the world so I don't owe anything else to it so I can just evaporate from existence. Then my kids run in laughing yelling "daddy daddy", thus giving me the strength to face the day. My wife finding every opportunity to provide positive outlets for me, and hearing and reading all the outpouring of support, prayers and love also give me the drive to push past the first overwhelming crush of each day, but each day goes on, good or bad and gives me the opportunity to make the most out of it if i'm not just totally floored by it all that day or I can live it and get the things done I want to in order to feel... 'ready'. I know God wants us to submit our cares and worries to Him as he will take care of them all and deliver us in His own way. With my knowing where i'm going but just not quite when yet, I just want to enjoy the most out of everyday without worrying too much about doing everything perfect, just getting by to the best of my ability and eating good, not necessarily the best I could possibly be eating, but doing what I like and what's fun. I try to deal with alot less BS when I possibly can; I cut people off when they're just wasting my time or beating around the bush, I just don't have time for it. Priorities are different now too; some things just don't really matter as much anymore so I don't bother myself with them.

So "let me forget about today, until tomorrow," and I will write you another tune. Until then, i'll just keep on keeping on as best I can and I wish the days that are brought to you all bring you to where you need to go and fill you with what you need. We will most often find what we seek if we just allow ourselves to open our eyes to what's right in from of us. I seek a cure for something incurable in a case that's unsolvable and for surgeries that are inoperable. My solution is right in front of me: peace. I just have to wrap my head around exactly what that means for me right here, right now. It's mine for the taking. I just have to stop being angry at having to settle for that and not a return to the life I had before and accept that what I have is what i've got. It may not be what I want, but it's surely enough to grant me happiness and peace within if I can figure out how to hold it.

~Pete


Monday, October 15, 2012

ER, Surgeons, & ER again

A lot has happened over the past month. I know a lot of you follow the blog and appreciate staying up to date so I am going to update you with as much information as possible while still keeping it succinct and to-the-point. So here it goes....

In the CANCER world there are really no easy days, just days that are easier than others. Throughout this journey we have had our share of tough days but I would go so far as to say that this past month has been one of the hardest we've experienced yet.

It all started with Pete's lungs needing to be drained in Portland while were passing through on our little mini RV trip. That was a shocker but we didn't realize how quickly that incident would lead to a progression in his condition. At that point the ER doctor informed us that he may need to have it drained again sometime soon but that he couldn't be sure how quickly it would fill up.

About a week later we went back to the ER, this time in Red Bluff. At that point they didn't think there was enough fluid to drain it and that we should come back again in about a week or when we thought it might be half-full. Over the course of the next couple weeks Pete would constantly say, "If it hurts this bad now, I have no idea how it's supposed to feel when it's half-full." He was just in constant pain all the time. His pain meds were increased and he began attempting to sleep propped up by pillows, sometimes rotating between the bed, couch, and lay-z-boy. It was then that he decided to ask his oncologist to write him a prescription for a hospital bed because he needed a better way to attempt to get some comfortable sleep.

Shortly after that, my FIL came up to attend a few of Pete's most important doctor's appointments to date; the appointments with the surgeons. It seemed that all our decisions had been hinging on these consultations. However, we mostly knew what the result would be but still tried to feign positivity. Pete's step-mom, who is a nurse, had informed us that the lung situation would most likely mean the surgeons wouldn't feel comfortable operating on him. There are a host of things that could go wrong including collapsed lungs, not being able to remove the breathing tube, or his body being immuno-compromised and not being able to recover. It turns out she was right and as much as we didn't want to hear it, her honesty was really what we needed to prepare ourselves for those two appointments.

One of the surgeons that we have been meeting with regularly over the course of the past 10 months is Dr. Matthews. He's a young guy with lots of energy and compassion. Throughout the past 10 months he has been there to answer the hard questions and has showed so much desire to help Pete. However, when we left that consultation, it was difficult not to be angry with the final result of our meetings; surgery just wasn't an option. It made me wonder, "What would it have been like if he had just done the surgery when Pete was first diagnosed?" But in the midst of our silence, after leaving the Dr's office, I had to remind myself of the positive. I told Pete, "Dr. Matthews really cares about you and if he could just snap his fingers and make it all better he would, but he can't so he is willing to do anything he can to make this better for you." While in the consult he talked with us about chemo vs. "quality of life", hospice care, counseling, and our new treatment options. He committed to taking the next steps to get Pete connected with someone he can talk to and an interventional radiologist to help with the lung problems. These are both things we needed and are very thankful that he offered to spearhead those endeavors.

After that appointment we headed down to UCSF in San Francisco. The result was the same. The Dr. explained a little more about why she didn't think surgery was the right option. She then suggested we meet with a genetic counselor to discuss the history of cancer in Pete's family. It's a good thing Charlie was there because we were totally clueless about ages of family members at diagnosis, etc..

The next morning Charlie urged Pete to be seen at the ER. It's a good thing he did because Pete's lung was half-full of fluid and his lung was on the verge of collapsing. It was hard to believe that it had filled up nearly 3 liters of fluid in less than 3 weeks! I was calling the ER to check on Pete periodically while I waited at home while Lucas napped. Charlie had told me how difficult the fluid removal was for him but said he was doing better now and that he would have another chest x-ray and be cleared to go home. Just a few minutes later he called and said, "Pete's having trouble breathing and he'd like you to come down. Just leave the kids in the car and I'll take them home. They don't need to see this." That was the quickest I have ever gotten out of the house with 2 kids. Amidst tears I pulled up to the ER and saw Charlie waiting outside. He apologized for scaring me and said Pete was just in a lot of pain but would be alright.

The minute I walked in the ER and laid eyes on Pete I knew he was in severe pain. He was coughing uncontrollably, tears were streaming down his face, and he was struggling to keep his temperature under control despite being wrapped up in 3 hospital blankets. I was enraged and immediately ran over to the nurses station to figure out what was going on. Within 5 minutes they gave him a shot of pain meds and the respiratory therapist was able to get him to take a few deep breaths to help him expand his lung. That was a scary couple of minutes, but I was so glad to see that he was okay although I hate to see him in such intense pain like that.

The doctor explained that it was such a traumatic experience because of the amount of fluid that was drained from the lung at one time. That's why our next course of action will be to meet with an interventional radiologist who will help us decide on a procedure which will help him remove or relieve the pressure of the fluid on his own.

So, it wasn't so short, but there's an explanation of the recent chain of events. 

Friday, October 5, 2012

Giving Thanks with a Joyful Heart {Eucharisteo}

If you've read One Thousand Gifts by Ann Voskamp then you will understand the meaning of the word I am about to introduce;

Eucharisteo

As I stood in my living room this morning doing yoga, while searching for something to fix my eyes upon and steady my tree pose, I came upon a gorgeous picture. I've always loved this picture, but for the first time I really felt the life of that not so long-ago captured moment, leap from the photo. My heart immediately overflowed with that bolded word above. That gorgeous word author Ann Voskamp explains in such depth in her book. The act and feeling of Eucharisteo. I felt the depth of it's beauty and joy explode at the moment I laid eyes on it and it struck me how important it is to maintain this thankfulness, beauty and joy in our lives. The one that is not only thought of and spoken about but played out in our lives.



Here it is. Here's the picture that screamed this with such intensity that it left me with an overwhelming feeling of joy and thankfulness in my heart.



Thank you Lord that you have used and continue to use us. Help us to be truly grateful in our daily lives. Not just to say thanks but to act on it. Help us to experience true joy in you and to have complete faith that you are in control of our destinies. Help us to remember that we have been blessed and therefore should be a blessing to others. Thank you Lord for a renewed day. One that you have granted us with expectations that we will live for you. Thank you Lord Jesus for these daily reminders. Amen.

Monday, October 1, 2012

Clouded by Hope

Have you ever experienced that veritable roller coaster of emotions? Most of us have in some form or another. For me, this roller coaster doesn't have a happy ending. Unfortunately I can't look forward to that familiar lighter-than-air feeling once the breaks come to a screeching halt and riders step out proclaiming victory. Nevertheless I'm stuck on this roller coaster. There's no turning back.

Grief is a complex process that I am constantly learning more about. It encompasses so many emotions which usually follow no set pattern. The emotions include denial, anger, bargaining, depression, and acceptance. I've experienced them all. Each day it seems like a new emotion has overtaken me.
Some examples include:

"Please just believe in healing and it will happen. God will heal you."
"Lord, if you would just heal Pete then we will give the rest of our lives to you no matter which direction you point us in."
"I'm so tired. I just can't do this anymore."
"It's okay to say goodbye. No one expects you to stay here and be in pain. It's okay to go."
"Why won't you talk to me! I just want to help you!"
"Well, I guess God doesn't plan to heal you. We just have to accept His plan."

....and the list goes on and on.

Well, a few weeks ago I was on a DENIAL kick, I was clouded by hope. I mean, it's good to have hope. Having hope definitely helps the situation, but a few weeks ago I experienced, first-hand, the downside of hope. While we were away on our mini-adventure in Oregon Pete started to feel worse than usual. Our trip was really low key and we ended up not completing most of the tasks we had originally planned to do and that was okay. We had planned to take it slow and not be too strict about sticking to a schedule. Over the course of our trip I began to ask Pete if he had any ideas about how we could work together to make our relationship better and grow closer. Through a series of tearful discussions he proclaimed that he was, "Just trying to survive," and didn't have energy for much else. I became ANGRY and DEPRESSED. How could he say those words? Was I not important enough to him? Didn't he have hope for the future? Hope of survival and of memories to come? I guess I didn't realize the there was an underlying issue that wasn't just the usual cancer.

Sometimes I feel that Pete's condition is deceiving. When people look at him, they don't see a sick person like I do. From the outside he looks good, mostly healthy, and he's even starting to put on weight. I guess, I too am still deceived by his appearance at times and was shocked when he mentioned the possibility of going to the ER. I didn't know he was THAT sick. So, off to the ER we went and our fears were confirmed when the Dr. told us that he had a build-up of fluid on his left lung which they would remove to help relieve his symptoms.

Upon diagnosis my thoughts immediately went back to my expectations of Pete just a few short days before and suddenly it became unfair of me to maintain them. I needed to re-evaluate my ideals and appreciate the time we do have together. Unfortunately that doesn't mean I'm not still angry we didn't have the opportunity to perfect our relationship while he was still healthy. It just means there's nothing we can do to change the situation at this point. Now is the time we need to find joy in the little things and cherish the good moments we have together. Although that's a tough pill to swallow, it's one I must force myself to.

Today was another roller coaster of emotions. It included another trip to the ER and confirmation that the fluid is starting to build up at a more rapid pace than it originally had. It's something we'll have to keep an eye on and he'll most likely be back at the ER within a week for fluid removal. But, we did share some sweet moments when we took the kids out for ice cream and made a stop at the library. These moments will be forever ingrained in my mind and for now, I'll cling to those and hope for similar opportunities tomorrow.












Monday, September 10, 2012

Peter's Journey to Survival


This weekend was filled with fun! First of all I got to help plan my little sister’s 14th birthday party, which is just so hard to believe. She has the most amazing little group of girlfriends that support her and love her and it was so great to see that. 

Secondly, I surprised Pete with a party for completing radiation. And it was a real SURPRISE! This is a big deal considering I haven’t had much luck keeping secrets from him over the course of our relationship, and Izzy knew about it. She was actually with me when I ordered the cupcakes and she continually said, “And I’m not going to tell dada.” And she didn’t! Way to go Izzy and thank you to everyone that attended (or wanted to!) and those near and far who sent him messages to lift his spirits and to spur him on during this next phase. It was such a blessing to see the joy overflowing from his spirit on Saturday night. So, thank you again for your support and love.

The party really was a fun event and left us feeling so loved by all our friends and family. The fact is, that with the move to Red Bluff the attitude around here has not been that great. In fact, I’m ashamed to say it’s been really poor. Pete and I have had a tough time coming to terms with the change, yet at the time the decision was made, it was necessary. However, now we’re here and settled and there is no choice but to come to terms with it.

My father-in-law was kind enough to come up this weekend to celebrate with us. Over the course of this journey he has been keeping a journal. As an engineer, he is not manufactured to create anything but thorough documentation of anything! And that’s exactly what he’s done. The document is filled with almost 200 pages documenting Pete’s journey; everything from doctor’s appointments, medications, CT scans, blogs, Facebook posts, texts, messages, and pictures. This is a complex document and I am so thankful for his dedication and perseverance to continue its compilation despite his hectic work schedule and travels. So, thank you Charlie!

But, when he handed it to me for review, something caught my eye, the title page. It was entitled, Peter’s Journey to Survival. When I first read that I immediately thought, “Is he getting something I’m not,” or,  “Am I missing something?” Last I heard we were running out of options. Every night I go to bed listening to Pete’s labored breathing and awake every morning to Pete grimacing in pain. It’s not a pretty picture and it pretty much makes it impossible to maintain as much hope as I once had of his eventual survival.

I remember one of my first Facebook posts back in December 2011, which read, “Please pray for our family but specifically for Pete. They discovered a tumor in his colon this morning and are pretty sure it's cancerous. He'll have a CT scan tomorrow and we'll know the results of the biopsy on Friday. The good news is that it's one of the better cancers to have as it is very curable. This is a very tough time for us so any prayers would be appreciated.”

I keep rethinking those last words, “…it is one of the better cancers to have as it is very curable.” Wow, if we only knew back then what we know now. Would we have fought harder? Would we have made more of an effort to live our lives to the fullest? Spread joy? Do more for others? The truth is, I have no idea. But I do know that we are where we are today, for a reason. 

The truth is that we have to keep hope alive and that means something different to everyone involved. Last night I finished a book by comedian Robert Schimmel who was diagnosed with non-Hodgkin’s lymphoma and is now cancer free. At the end of the book, he shares a list of lessons he learned over the course of his treatment. One of them that stood out to me was, “Create a purpose, a focus, and never take your eyes off it.” This is true of anything, not just cancer. It reminds me of the story of the woman that was determined to win the lottery. She meditated on winning the lottery everyday and guess what, she won! So maybe my father-in-law has the right idea; believing that Pete will survive despite having all the cards stacked against him. And, although my faith waivers day-by-day, today I’m back to believing survival is possible. So, as always, keep the prayers coming. 

Sunday, September 9, 2012

Every Rose has it's Thorns

Nothing exciting here; no waxing philosophical today, just an update of whats been going on the past couple of weeks. We've had to make a few sacrifices as of late to accommodate the changes our life has brought us. Leaving our house in Chico that we have worked so hard on to make our home and has become our refuge was hard, is still hard. I'm still not happy about feeling dragged out of it unwillingly, but it's for reasons I know we need to let happen for the time being. As hard as change is for me to take usually, this was a big step to force myself over. My mind can't process and accept alot at once right now. I feel like an autistic child must; easily overwhelmed by noise and multiple stimuli. I don't like it and try to shield myself or hide from it when confronted by it. My head just can't handle it. Getting our house in 'showing' condition wasn't easy, but it gave us the chance to finish all the details and finishing touches on the renovations we did in the beginning when we bought the house that we hadn't gotten to, so really our house looks better at the moment than it ever has. I'm glad for that, but not for the loss of the comfort of 'home' that our new house lacks. We had tons of help between getting the Chico house packed and cleaned, moving into our new rental house, and getting settled by touching up the details and landscaping at the new place to make it feel more like home. My father and step-mother, Kathy, stayed for a week to help get things settled for us. We're settled in, but Chico is still our home. Circumstances could have necessitated that we moved much farther away, which would have still been hard, but it would have seemed more preferable than having had made the move to somewhere so close but giving up so much.

I finished the final treatment of radiation last Thursday, August 30th, and now start the 5 week pause to allow my body to heal itself before I abuse it with any further treatment options. I have an MRI scheduled on Oct 5th, to map the primary tumor area, to see if surgery will be an option or if it has intruded in areas that would make it inoperable. I then have follow-up appointments with both a local surgeon and with the surgery department at (UCSF) U. of California San Francisco teaching hospital. Alysha surprised me last night with a party at the house to which she had invited many of our friends from our church group in Chico and other friends and family. It was a welcome surprise and uplifting event to make me feel supported and loved. Thank you to all who attended and who wrote encouraging letters about their encounters with me over my life. I can't thank you all enough for all the support and encouragement now and always and hope to keep you all informed as things continue to develop over time. We love you all for helping us through this all in your own ways. We are eternally grateful.

~Pete  

Thursday, August 23, 2012

Like a desperado waiting on a train

This morning I awoke to an empty house, a scary experience for me. I need people around me as much as possible right now, even though it goes against my anti-social inhibition. My father and step-mother, who are visiting for the week, are leaving early from their hotel to go up to the new house in Red Bluff to finish painting. Alysha stayed up at her mom's house with the kids last night after starting the painting earlier last night. Being alone with my own thoughts is not a good thing right now. I was thinking about when we were down in Phoenix at Cancer Treatment Center of America, how everyone and everything about the place is so cheery you can't help but feel uplifted even after receiving the worst of news about your condition. I was reflecting how I have 1 more week of radiation and how when someone finished their radiation or chemo treatment, they rang a bell to celebrate, to make the patient feel good, for something to be about them, even tif the thing they are celebrating was the most horrible experience they've ever had to go through. But it feels good for someone to cheer for you even if it was just a kick in the balls. Here though, back in 'small-town Cancer Center USA' where normal people can afford the care, i'll finish radiation next week and be sent out the door with a bill still wondering if it did any good and where my treatment will go from there. No fanfare, no joy. Back in Phoenix, they do everything in their power to keep your spirits high. Mine right now; they're already digging the hole. I woke up early this morning lethargic, hardly able to move, everything sore and achy, no energy, no positive attitude, alone, nothing left. I cried in my oatmeal.

I write about staying positive, about the power of hope, the power of faith and prayer. Then I wake up to days like today. I'm usually surrounded by people who are willing to help so i'm not overwhelmed, so I don't have to make decisions, something that's becoming surprisingly difficult for me to do, weird, but it just takes too much, my mind can only handle one thing at a time and when something is thrown at me demanding that I adjust to decide; I hit overload. Many people are on standby waiting to be able to fulfill any need that arises to help us, but I don't know how to even help myself anymore. We have only one car, i'm not on the insurance, Alysha drives me everywhere but loading the kids up in the car requires planning so what really needs to be done is all that gets done. I can't just run down to the store, or go get my hair cut (which is in major need of a trim), i'm starting to fit in with the Chico crowd; unkempt hair, wool socks on with sandals (my feet still get cold even in this heat). So much of life right now revolves around moving to this new house in Red Bluff so we can afford to live by renting out our house here in Chico which after much work over the last year, has become home, everything i've worked for in my adult life, where we want to raise our kids, where we became a family. The stress of moving to a place that feels far from home, making the kids adjust, again, feeling like I need to help in the process but feeling inadequate to do much; it's more than I can take right now. It shows in my marriage; almost every conversation lately has ended in an argument, i'm short on tolerance with the kids and with noise and chaos in general. I don't like that, and my family deserves more than that from me, I just don't feel emotionally capable of being bright and shiny and patient. I feel more like just a patient.

To rid myself of at least some of the negativity I feel, I dunk myself in the hot tub to let it melt away. Shortly after my Dad appears on the back patio and I splash some water on my face so the dripping water will camouflage the tears that are still rolling down my face. I'm not exactly sure why i'm crying again, I don't try to dig too deep into it, I just am. I vent a little to him and he leaves to go get coffee for us all. I lay still and soak. I focus on the still reflection of the water then a tear drops onto the calm surface. It ripples and blurs; just like how I feel. Maybe tomorrow will be better. I think i'll just try to pass today hiding in as much solitude and calm as I can find, waiting for it to turn into a better tomorrow; like a desperado waiting on a train.

Friday, August 17, 2012

Memories

The other day, while Lucas napped, Izzy and I looked through every single photo album on the computer. We ooed and awed in unison as we reviewed each pic from her birth, life and travels abroad, the birth of Lucas, all the way to the present. It was evident that we have been blessed by some very precious memories of time spent together.

So, without further adieu, here are just a FEW of the photos I thought were deserving enough of a repeat viewing. Don't worry, they'll be more. Enjoy!

 My whimsical princess. Swinging is one of her favorite pastimes. 

 My active boy!

 Lucas and dada, September 2011

 Mommy and Lucas, December 2011

 Sister and brother, December 2010

 She dressed herself, October 2011

 Izzy Joy! July 2011

She finally fits into her yellow "Clown" shoes, July 2011

 Contemplating, July 2011

 Yummy!, July 2011

 Lucas bright eyes, July 2011

My little devious man, July 2011

Tuesday, August 14, 2012

Hope Floats

You don't typically think of 'Hope' as a dynamic entity. Lately however, 'Hope' to me has been a fluid, ebbing persona of its own that changes faces as seamlessly as a fleeting breeze wisps away certainty leaving behind only doubt. Our own concept of hope relies on where you perceive your best chances for getting out of a certain situation lies. Ideally, my hope would lay in a cure for cancer, but there is none. Does that mean i've lost hope? Certainly not. I know there's no surefire cure and that many people i've met and have read about have had successful outcomes with their own battle with cancer. Their stories are all different because their situations are all different. Many cases are successful due to the ease with which their disease can be eliminated by removing affected areas or organs. My case is different in that my affected areas and organs are inoperable due to location and intrusion of the masses into or around sensitive nerves, blood vessels and bones. My current path of completing radiation therapy after 2 more weeks may allow for surgery for the resection of the rectal tumor if an MRI of the area shows that there is no such intrusion. My current symptoms and pain lead both myself and the doctors to believe that this surgery has a high chance of being contraindicated by a potential complication of this nature. Does this mean i've lost hope? A little. Even if the scan shows that surgery is a viable option and the resection is performed, it stills leaves the inoperable masses on my lungs and the phantom mass on my liver that they can't "definitively identify".

My sense of hope has definitely wavered as my levels of pain and overall discomfort has continued to increase and spread. All I can and have done, is to attempt to target and lessen the levels of pain emanating from several sources. Each one requires being targeted differently and each has it's own set of other side effects from the nature of the why there is pain to begin with and from the medicine used to treat it. It's been an ongoing struggle, but yes, I still have hope. Some days it's still hard to identify what that hope is in however. With the pain under control, I can think more clearly now that the ominous feelings of helplessness and futility aren't overwhelming me and drawing me deeper towards despair. I can say I have hope in trying every option we possibly can; finish radiation, do the surgery if it is an option once evaluated after radiation, try the last type of chemo that is offered. So far none of these paths have really shown to provide any improvement. The surgery will eliminate many of my problems, but still leaves many others. It's like how they describe when a terrorist or tyrannical leader is eliminated; it's a great victory, but others are right there to fill in the void left behind. All these thoughts weigh down my will to remain positive, but as Alysha has said several times lately; hope should not be destroyed by putting faith in those who cannot and will not give you a positive outlook, that being the medical community. They can't offer a cure, so they offer comfort. They can't guarantee anything about the future so they treat the present. That doesn't give you much hope. And I have struggled with what Alysha has stated so fervently as of late; that our hope is with trusting that God will deliver me from this.

I am faithful and am grateful for the ability to have restored the faith in others who have read our posts and are inspired through grace by our words to seek out the Lord and His love in their lives as well. We do know however, that me making it through this may not be part of His plan for me. That makes the concept of 'Hope' through 'Faith' a very flexible and even surreal presence as you have hope that God will heal me but through faith, though you accept whatever is in store for you which may not include being healed. How does hope work in this case. Should I have hope or faith? Is it ok that I am still angry that having faith may hold no hope for me? I do not doubt that my fate will take me from this earth much earlier than I should be, but I hope that I will have the time to spend with my family before that happens that will be meaningful and allow time for me to nurture my children to instill in them the virtues and morals I want them to carry with them through their lives. So I have faith, and I accept my fate. Though my hope now lies with the 'here & now', that I make every moment count, if my back is hurting and I have no energy, you will still find me smiling and pushing Lucas around the patio in his toy car or holding him even though it kills me to kneel down to pick him up. I am determined not to give in to the anger and frustration this brings daily, to not succumb to the pain and allow it to make me short of temper and in a foul mood, that's not how I want my children to remember me, it's not the husband I want Alysha to have to deal with, I want to and will be the father that smiles through the pain to play one more game of knights and dragons and be the husband who helps with the chores even though i'm exhausted and takes the time to give my wife a break, watch the kids, rub her back and still be present to encourage and support her through her frustrations and stress, to reassure her when she is in doubt. Our plans and worries about what the right treatment to do or what diet to follow, what supplements to take honestly in the big picture, doesn't matter. Trusting each moment we have to God, submitting to His will and putting Him in each second of our day, that's what will get me through. Even if it's not to a miraculous recovery, seeking Him when the kids are pushing me to the end of my patience but smiling and calmly dealing with them instead of loosing my temper and getting angry and yelling, pausing to take time to listen to Alysha when she is wanting to share something with me instead of half listening over my shoulder while sitting at the computer or reading a book, these are the things that by investing quality and intentional time to be the person I should be, this is honoring God and honestly just living better. We should all strive to live that way anyways, but having a trial such as mine truly teaches you the importance of doing that and instead of giving in under the enormous weigh of what it brings, shrugging it off by simply putting your worries and trust in God, it gets you through the obstacles much more easily than struggling through them needlessly.

Once again, I hope this insight inspires and encourages. Thank you so much for everyones continued love and support. With all my love,

~Pete

Sunday, August 12, 2012

Thank You {Your Prayers Have Made a Difference!}

We are so blessed by the community of believers that has surrounded us throughout this whole ordeal. Tonight's event of Prayer and Fasting for Pete was just one reminder of the love and support we have experienced during this trial. Thank you for reminding us to believe again in the healing power of Christ.

Many of you have probably felt the change in our attitudes as Pete's condition has progressed; I know we sure have. And for the past couple of months God has been constantly reminding me to "just believe". God has been challenging one of my greatest fears of the worst still happening in spite of my faith that He can heal Pete because, in the end, I'll be thankful I believed while I could.

God also prompted me to change my attitude when, most recently, I came across a friend of a friend on Facebook who's sweet little girl, Jenna, was diagnosed with a brain tumor. The faith of Jenna and her family is so inspiring and has taught me to believe once again. You can find her incredible story here. Please remember them in prayer as Jenna starts chemo tomorrow. It's interesting how cancer can create a camaraderie which forces the afflicted to band together. God's Got This!!!

So, thank you to our wonderful friends near and far that continue to act as God's hands and feet. You are certainly making a difference.

XOXO

Grace

The other day I went to the pawn shop to sell some gold. Don't worry, we're not that hard up! It's just, with the impending move and the downsizing, we have been purging like crazy! So, I got together those old dolphin earrings I got for my 13th birthday, some outdated black hills gold, and a few gifts from old boyfriends and decided to head down and see what I could get for it.
As the attendant went through the treasures I set before her, she set one piece aside, a little fake-diamond studded violin pendant that obviously didn't pass inspection. As I cringed at the thought of having to return home with the hideous piece of costume jewelry, I was reminded of the story that led to that pendant being placed in my hands.
When I was 19 years old I went on an intercultural exchange to Ecuador, S.A. There were many things that happened within that almost-year abroad that made it quite a learning experience. But, there is one story I will never forget.
As an exchange student I received $50.00 a month from my sponsor to use towards any expenses I might have. One particular month I decided to put the stipend aside so I placed it in the top drawer of my dresser for safe keeping. One day when I went to go look for it, it wasn't there. I was a little surprised but thought I must have misplaced it. However, as I retraced my steps I realized something had gone awry. So, that evening I asked my host sister if the maid had ever stolen anything from her. Of course, her response was no but I told her the story about the missing money anyway.
A few days later I was at school and I looked up to see our maid peeking through the window of our classroom. She motioned for me to come outside. The minute I stepped outside, tears began to fall from her eyes. She had been approached by my host father and her job was threatened. She literally dropped to her knees and pleaded with me not to tell the truth about the missing money; the fact that she had stolen it from me. She explained to me that she was struggling to make enough money to support her family and needed the money to buy school books for her children. My immediate reaction was one of shock and disdain, "But you stole from me!" I thought. But as she pleaded with me, I became aware of the level of her desperation. Her job was on the line and if she was fired, her children might suffer. So, I told her not to worry. I would go to my host family and tell them I had misplaced the money and was sorry for accusing her of stealing. In exchange she gifted me the violin pendant.

As I explained this story to Pete this afternoon I was overwhelmed by the emotions of pain, despair, repentance, and forgiveness it uncovered. Not only did I decide to forgive her but I essentially took the blame for her wrongdoing. In the eyes of my host family, I was an ungrateful, accusatory little American girl that had disrupted the flow of their daily life. However, in the end, the maid kept her job and I moved in with another host family.

But, as I held that little violin today, I was so thankful for that experience. I was also very grateful that it didn't pass inspection the other day at the pawn shop. You see, now that pendant has so much more meaning than it ever has before. It has become a metaphor for God's grace. How many times have I come before my heavenly Father, just as she came before me that day, with tears in my eyes, begging for forgiveness and pleading that he would make it all right?
The answer---too many times.

I am looking forward to the day when I will be able to explain to my children the significance of that insignificant piece of jewelry. I hope they'll be proud of their momma. But most of all, I hope they'll thoroughly understand the depth of their Father's grace. Sometimes all it takes is one of those real life moments for us to fully understand the flawless love our Savior has for us, and I thank God for THAT moment.



Saturday, August 11, 2012

Weary Mom {Seeking Rest in the Midst of This Mess}

It has been a long time since I've blogged. Partly because I haven't had time, but mostly because I have been living in a whirlwind of sleep depravation and self-doubt. As each day sneaks by I find myself wondering what I have done with my time. Have I used it to do something meaningful or have I just pittled away this precious resource God has granted me?

Over the past couple of weeks I have been really hard on myself. My mind is so often filled with thoughts of self-doubt, frustration, anger, and criticism. I find myself wondering if I'm a good mom. If I'm capable of carrying the weight of our family through this trial. I sometimes get angry at myself for not being more present for my kids and for Pete. After all, we have no idea how much time we have left together, shouldn't we be making the most of it, not plodding through the days as if each passing hour is a burden?

In the midst of all this, God stops me and reminds me to give myself a break. He constantly reminds me that my circumstances are unique and are not to be compared to that of anyone else. Maybe I shouldn't be trying to hold myself to such a strict set of standards that most everyone is incapable of meeting, not just myself?

The truth of the matter is that I'm weary. In fact I am so weary that I find it difficult to make it through each day. I am snippy and tired. I'm anxious and withdrawn. I'm fake and clouded. I'm more weary than I have ever been in my life. My burdens are so intense that I find it impossible to make sense of any of it. Often times I sit before God and plead with Him. I ask him why I have to be bombarded by these trials. In fact, it's not enough that my husband is sick, but we have to move away from our family home, and our sweet little Lucas wakes 5 to 10x per night. I can't take it. I have no idea where to begin to make this all better and I feel helpless.

Last week's message at church was about finding rest. During that message God was speaking directly to me. I needed to know that it was okay for me to seek rest and rejuvenation even if it meant time away from my family. I need to take care of me first before I can take care of anyone else.

Throughout the week I have been tentatively taking steps towards this goal and it looks like it might finally come to fruition in a few weeks. I will only be away for a few days but I am in great need of some restoration for my soul.

I was also prompted by one of my favorite blogging moms, Brooke McGlothlin, to incorporate a few other methods of finding rest when I read her heartfelt blog post on rest for the weary mom. You can find it on her blog at  Surprised by Life. Last night, as I laid awake with Lucas for hours starting at 2:00 am, I realized that in the midst of my daze, I am missing out on so many precious moments. I must make it a goal to capture more of those moments, both for the future when our children want mementos of the time they shared with their dada, and for myself too. This is exactly why #6 on Brooke's list resonated so much with me.

So, it looks like God is leading me in the right direction, I only need to keep moving forward. As always, thank you for your love and prayers. Although we may never know the plans God has for us, he has promised that he will never leave us or forsake us. It's times like these that make me cleave to that promise more intensely than I ever have before. Thank you Lord for your promises and your never ending mercies. You are a breath of fresh air when all around me seems hopeless.

XOXO

Tuesday, July 31, 2012

My Chariot's on Fire!

"Failure after long perseverance is much grander than never to have a striving good enough to be called a failure."
George Eliot

     Now I could always quote Frank Oz as Yoda in Star Wars (Episode IV): "Do or do not, there is no try." I recently wrote a poem for Alysha, too private to share here, but it came down to a list of things I feel that because of my illness I have been unable to fulfill to the degree of quality of which I would have liked to. It's not for lacking the desire or spirit to satisfy my responsibilities as a husband and father, rather a degradation of my energy; physical and emotional strength which inhibits my ability to be the man I need to be. The ending of that poem however, stated my clear intention that in light of how I feel that this illness has debilitated me, that I will not give up or give into it without continuing to fight. Having still struggled on a daily basis to get the pain, again both physical and emotional, under control leaves me weak in the knees and weak in spirit. I've been told by several people that it would not be a fault to say enough is enough and give in to the pain and exhaustion. 

There dwells within me still a pretty dark place, an island of despair and hopelessness that wells up within me in times of weakness when i'm overcome by the effects of the cancer. Most of the time it's kept quelled by keeping positive and seeking the good in every moment. However, it is a persistent beast of burden that sneaks up on me when i'm not focused on maintaining a rampart of hope and positivity to repel it. Having continually received the same reply from prestigious cancer treatment centers around the country that "we can't do anything more for you," and having our options continually limited by genetic gene mutations that inhibits this protein or this molecular process from allowing certain treatment methods from being effective, needless to say it gets very discouraging. It certainly lends its hand in leading us to confront the inevitability that I may not make it through this. We've recently discussed with both the medical and radiation oncologists what plans of action remain and it's come down to finishing radiation, which i'm a week and a half into a 6 week round of, to see if it's had any positive effect in either moderately shrinking the tumor or alleviating any of the pain or other symptoms associated with the tumor placement. Then the potential for surgery would be discussed, even thought the consulting surgeon has shied away from being aggressive in pursuing surgery as it won't solve any of the other problems posed by the metastatic disease in my lungs and the still unknown phantom lesion on my liver. We are trying to push for the surgery regardless of his hesitations, even if it means finding a different surgeon, just to eliminate the continually aggravated nature of the primary tumor; the pain, the blockage and discomfort. I want it out. Then, we try the remaining type of chemo that is the last version available to me and then we make the most of my remaining days. 

I've been on the verge, in the midst of unbearable pain and discomfort, of giving up hope and feeling like I would give in, but my mind turns to my children and the pain and confusion that they would be left with in my absence and cannot and will not allow myself to willingly go to that place. Whatever God's plan for me is, whether my chariot awaits to deliver me to my eternal home now, I may be led to it, but with all the strength within me, it's gonna be down for maintenance if I have anything to do with it. The horses may be ready and willing to pull that chariot to the gates of heaven, but if I approach it, it's gonna mysteriously catch fire and be unable to fulfill it's journey. Sorry, not today... I certainly mean that in no defiance to God or to my acceptance of what my fate might hold, though regardless of how much pain I bear, no matter how weak and frail I become, I owe it to my family to fight with every last ounce of will and determination left within me. I've been going through possessions in my garage and my shed to see if we can thin out our belongings to have a yard sale and in going through all the gear I have for camping, skiing, rock climbing, and mountaineering, it pains me to think that I may never be able to use any of it again. My heart and soul yearns to climb and to ski high snowy peaks near and far, but my failing body anchors me to a desolate flatland. One day at a time, I will seek to keep that determination alive that I will once again have the strength to undertake another adventure, even if it would be my last. Just continuing to go through this trail is a daily adventure, but as long as I have the loving support of my family and of friends, I know I can reach that summit. Until we meet again, the best be with you all. Thanks for tuning in!

~Pete