breathe...

Take a moment…right now…take a deep breath. Inhale…you can feel your chest bellow and your tiny hairs tickle your nostrils…now exhale. Every ounce of your breath leaves and you notice a slight shift of your inner body. If you never really breathe deeply like this, you would rarely notice you were even breathing. It is so second nature and a part of our every moment that breathing is completely normal…just a part of being alive. Now…imagine one of your lungs being collapsed…all the time…and instead of your chest bellowing out with a huge sip of air, your stomach has to over compensate for your lack of lung expansion. Imagine it hurting to take a deep breath. Imagine not being able to take full breaths but only quick, short, thin ones. What would go through your mind in that moment? Would you panic? There is no way you could not notice such a change in your breathing pattern because this would be out of the norm for you. What would you do?

Last night, John and I did not sleep. John a lot less than myself. Poor thing…he is exhausted. His coughing during the night was unmanageable and he sat up periodically to clear his lungs of all the mucus build up or to adjust his back. Every position, every breath, just about everything is uncomfortable. We slept some of the morning and early afternoon and were completely fatigued. We drained later that afternoon and that is when his breath was seemingly knocked out of him. He was panting with short, shallow and quick breaths. It was all mid-drain and he turned to me and said, “I feel like I just got done running a marathon.” I quickly grabbed the oxygen mask that sits bedside and hooked it around his ears. I finished the drain, cleaned his wounds and called our hospice nurse, Robyn. She advised me to give him a few meds that would get everything under control as she came quickly to the house. All the while, John was completely calm. By the time she arrived, everything was back to normal. Remember, normal to John is not the normal we know. She even said it looks as though his breathing resembles that of an asthma patient. Even when he is in complete rest, he cannot seem to take deep sips of air. His voice is slowly going as well. I noticed today he was whispering a lot more rather than the cracked speech he has had this past week. On top of all this, his sister was not feeling well and ended up in the ER. She is fine now…thank goodness…but this day all in all felt terrible.

My heart is sad right now…it has been for quite a while now. It is not controlling this journey but rather a part of it. We must continue to try despite the looming sadness…we must continue to laugh…we must maintain our strength for him…we must keep fighting. Moreover, we must continue to take a minute and recognize our own breath...appreciate every inhale and every exhale…I know he does.

take my hand...

It is an interesting feeling knowing I have extended my hand to take you along on this journey and the support is showing no signs of slowing down. Though we do not reveal everything on this blog…we do tell you a lot. There are still certain aspects of this life that deserve to stay sacred between a husband and wife but it does not mean we have/will not be honest. We do not hide much…there is no need to. What we are feeling and what happens in our day to day is something that should be talked about…maybe it will help someone out there realize something…anything in their life that could be altered or improved upon because of this electronic diary. That is fine…why not? We have always been an open book and now with this battle, it is even more magnified and less controlled. Our pain is felt, our tears are seen, and our love is read…here…every emotion is put here…in our own words.

We still cannot get over the fact this is happening. We cry every single day. One of us will start and the other will follow closely behind. It is hard to watch my sweet angel fall apart. I try to stay strong and smile as often as I can in front of him…to try and cry by myself…but the moment I see his tears, I feel mine roll down my already damp cheeks. This is not getting any easier and emotionally, we get pummeled to the ground with every passing day. It does not mean we do not try to press on and keep moving. John did get out of the house this weekend…we went to the mall because he wanted to. His mom, sister, John and I went for a walk around an incredibly busy mall…all in his wheelchair. I could see him in the front seat of the car on the way to the mall and back home...soaking it all in . Every so often, he would close his eyes as if he was really feeling the heat of the sun shining through the passenger window on his skin and taking in that moment to its fullest extent. It was a beautiful thing to watch. All in all, it was a good weekend…as good as it can be for what he is going through.

For those of you still reading and still following…thank you for continually taking my hand.

his day...

Yesterday was John’s day…and it was wonderfully relaxing. Like I said in the previous post, there was no agenda. We had a few visitors who all came to show their love to him. Lots of hugs, kisses, stories and birthday wishes floated around the house. John was able to get out of bed for a while and enjoy everyone who stopped by. He read several cards with their sweet messages and enjoyed a special cake, made just for him...thank you Steph's mom.

There was another beautiful, little gift waiting outside for John that afternoon too...

We usually sleep, eat, and talk about cancer day to day, but John’s birthday had nothing to do with that disgusting disease. It is unbelievable how something can dictate your every waking thought and movement…but yesterday it all went away. Today was just as pleasant and we are trying to keep that trend into the weekend. The plan is to go to the mall tomorrow…only if he is feeling at his best. We will have the wheelchair in tow and will try to brace ourselves for the cold weather. The Floridian blood still runs through us and it already feels a lot like winter here. :) Thank you again for sending your sweet words to John these past few days...it means the world to us. John also received this amazing video from my beautiful coworkers/family back in Florida...please click, watch and enjoy...we did. :)

tomorrow...

Tomorrow is John’s 28^th birthday. We will be celebrating as much as we can with family and friends by our side. There are no set plans, no set menu, and no set itinerary…we will figure that out soon enough…it is just time to celebrate the birth of an amazing, beautiful, loving, incredible man. He has held on and fought so hard…continuing to amaze me every day. He is still very sore from the fall two days ago, but has kept pushing on. Yesterday, we walked up and down the street two times…all his idea. With my help, arm in arm, we took a walk. We said nothing at all…just walked…it was absolute perfection.

So we raise our glasses…to you John…happy birthday my sweet angel. I love you more than you will ever know and could ever imagine. Thank you for being my husband, my best friend, and in my heart forever. I adore every ounce of you...and I am not the only one.

the weekend...

There is no separation in our days anymore. They all run together and to differentiate between weekdays and weekends are nonexistent. The title should be “the past few days” but since the rest of the world is on a schedule…I will try to be as well. Weekends mean family and friends are around more often and we do not have to think about appointments for a little while. Draining his chest fluid and keeping the leaking under control were what consumed the other parts of our days…just like any other day. John’s breathing is starting to get erratic. When he would get up and get a drink of water, I noticed his breathing was heavier in the past…now even in rest, it has gotten worse. I constantly offer the oxygen sitting in the next room to bring him some sort of comfort and he always refused…until today. “It is uncomfortable…I don’t want it,” he would reply. The tubes sat awkwardly in his nose at the hospital but we still tried here. He finally gave in today and we hooked it up next to his bedside. Right now, it is whatever John wants or wishes to do. I feel bad offering as much as I do because I know he wants to keep his sense of independence and know he can still do things for himself. It is becoming less and less of him putting up a fight and saying he can do it on his own…because he cannot anymore. He still tries…and I am still learning to have those boundaries of letting him try. Yesterday was a good, relaxing day for the two of us. I went and ran some errands with the girls in the area and John stayed up the entire day watching football here at home. I missed him every second. Just being away from him those few hours was difficult but at the same time, he pushed me to get out of the house. We reconvened in our bedroom last night and talked about how much we missed each other for those few short hours we were apart. It is hard not to when we spend every second of the day together.

Today was an extremely difficult day. I cannot even begin to describe the emotions. John and I went to his regularly scheduled Monday morning appointment to check how his hemoglobin was faring since the blood transfusion the week before. We got the good news that afternoon letting us know he was holding strong at 11.1. We had discussed over the weekend to go look at funeral homes together because he wanted to be a part of that journey…understandably so. Wouldn’t you want to be? As we started our walk up to the door of the first home, we held hands for strength…both emotionally and physically. He has been having a hard time walking without holding on to something/someone for balance lately, so I was mindful of that. We got to the front door…I had one hand and his other had the railing…and I let go….for one second…I let go to open the door. I hear him desperately say my name and I turn around to find him falling backwards. I quickly reached out for him but was not fast enough…my heart began to race as I knelt down next to him on the ground…cringing in pain. He fell. I let go of him and he in turn released the railing and fell. I kept asking him if he needed an ambulance as he fell incredibly hard on his tail bone and hit his head the rest of the way down. I felt and still feel responsible/terrible. I got him into the car to start making our way to the ER and John refused to go. He said he was fine and did not need to go…he just wanted to go back home. I got him in bed, sitting up against a few pillows, and made sure not to let him sleep…or if he did, wake him up every few minutes. My mind was a mess…I could not believe what happened today and thank goodness, John is okay. We are both emotionally beat down after today…anticipating the funeral arrangements and then the fall…it took a lot out of us…a lot out of him…he has the strength of a million men…to go what he is going through and still have his tenacity is unreal to be a part of. I think we both cried more today than we have since arriving here in Indiana. It has been gut wrenching. Though we cried a lot today…we kissed and hugged even more. In the midst of our tears, John would grab my cheeks and kiss me…or our foreheads would meet and we would lean in for a kiss…or our hands would touch and we would embrace one another. Today was painful, but those things and embraces from Megan and Susie made it hurt less.

Today is the first day of November and that means John’s 28^th birthday is Thursday. What to get for the perfect man? I have no idea…every time anyone asks, he replies, “Nothing.” I just want to give him the world…give him anything to keep him with me, his hurting family and damaged friends….hold him to make all hurt go away…my angel. 28 on November 4…November 4, 1982 is the day of his birth and the best day in the history of the world…that was the day John was born…from there, he took the trail that led him to me…and for that, I am forever grateful.

touching...

John and I have never been shy about how much we love each other. Since we knew we wanted to spend the rest of our lives together, it has never been a secret…especially not to each other. We are not the over  the top couple who cannot keep their hands off each other in public, but we do steal kisses, hold hands, and constantly take a moment to touch no matter where we were. I would have my arm under his or run my hand on his back and rub his bald head…he would always have his hand on my leg driving around town or brush his hand on my arm…all this to say “I love you” without saying anything at all. The touch I will miss the most is his hand on my face. He would grab my cheeks to kiss me or when I cry he put one hand on the side of my face to comfort me. His rough, large, shaky hands on my face would always make the world go away and make everything well again…if only for that minute. Now, as we sit here and cry several times a day, I grab his hand and put it on the side of my cheek for him. Weaker and sobbing himself, his still shaking hands on my face are now thinner but still full of so much love. To help him with my touch, there are constant foot rubs, back rubs, embraces, head rubs…anything and everything to keep my energy on him. Just saying I love you is not enough…showing him and comforting him with my love is just as significant. We usually fall asleep holding hands…again, all trying to fill him full of my energy. The power of a person’s touch is an amazing thing…many do not realize how much sweet energy they can give someone just from a simple touch.

Something else very touching to our family is the outpouring of love from this blog. Getting random messages from those we have never met is extraordinary. Those who take the time to write encouraging words, love, prayers, mention us on their own blogs, become followers of our blog, and who just plain read about our story are all incredibly thoughtful. Thank you too. I always thank our family and friends and I must thank you as well. You know who you are…I do not know you either, but thank you for taking the time to read and follow. It means more than you know. Here is the beautiful man we are all fighting for…family, friends, and strangers alike.

week three...

Yesterday marked our third week in Indiana. It has flown by and the change in John’s appearance is so much more evident since our arrival. Through these three weeks it has become harder and harder to build his appetite and to keep things from seemingly “going wrong.” John said those two words yesterday after an incredibly hard weekend. “Why is everything going wrong on top of what we are dealing with?” he sobbed. I wish I had some sort of answer for him and it hurts to know he is feeling this with this avalanche of disparity wanting to devour him in these final moments. 

The weekend was not what we expected. We were hoping for a relaxing, problem free few days and instead, his side started giving him issues. We noticed the slow ooze coming out of an old incision on Friday night in the form of a dark, yellow pus. Sorry…a little graphic…I know. Later that night, John shakes me awake and turns on the lamp next to our bed. He had bled through the bandage we put on hours before…through his shirt…through the sheets to the down comforter underneath. He looked shocked…and so was I. There was blood everywhere. I kept asking him if he was in any pain and he kept assuring me he was not, but the area to the touch was a completely different story…it was painful. We quickly took the bandages off to see what was happening to the incision site that originally started as a pin hole. It had expanded further through the slit that was originally scabbed over and was now like a leaky faucet. It did not stop flowing no matter how many gauze pads I stacked and taped on top of it. Every hour on the hour, he would bleed through and we would be awake to strip another set of sheets and try to somehow slow down the continuous flow. It was such a long, agonizing night…finally morning came and we called Robyn, our hospice nurse, to come quickly to the house. She taught me how to bandage it tightly and brought different supplies (thicker, more durable pads) to keep it from leaking every hour. I asked her where the fluid was from and she said it could be any number of things, but we have to continue to let the “bad stuff” come out. It is completely understandable…there would be no reason to stitch him up because his body just wants to push it out… stitching it could cause it to want to come from somewhere else, in turn, causing him more pain.

With all this…John still wanted to make the effort to get out of the house. Getting out of the house is his favorite thing in the world. He pushes himself to get on his feet, get dressed, and move. He wants to move. I cry every time he tells me he wants to do things on his own because I know he does not want to lose that part of himself. This is becoming less and less….and I cannot tell you how difficult it is to realize. One giant step John took this weekend was going out to dinner with friends. He wanted so badly to have a night with friends to eat, laugh, and again, get out of the house. He was there…but I know he was not completely comfortable. The ringing in his ears was louder than ever, the weight loss has caused sitting for any amount of time to be excruciating, and he is slowly losing his voice which made the conversations in the loud restaurant harder than normal. Here we are...with his sister Megan and her husband Chad.

Sunday came and both of us were completely exhausted and we had to keep a close eye on his dressing. On top of this, we continued to drain…and on top of that, John’s feet were swollen and needed to be elevated. Monday at the doctor proved that his counts were at 8.8 and the doctor ordered a transfusion for later that afternoon. We were there over 6 hours and were craving to leave the hospital quickly…it just felt longer than expected. 

Can he have a break now? I am pretty sure he has enough to deal with and has enough on his plate than having to now deal with this. He realizes all these things are happening because his mind is still very much here….and he cannot seem to control the downward spiral his body is taking him on. He loathes what is happening…as do I. His sweet spirit is taking a beating yet he continues to press on. If anything, he is not going to stop fighting until the very last second…and with that, we all continue to rally around him to do the same.