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.


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;


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.