My Hero

It’s amazing that, after being a nurse for almost 5 years, I never realized until this week how annoying it is to hear, “and how would you rate your pain between 0 and 10?” I mean, what does this even mean?? My 5 might be your 10. But I guess that’s the whole point - to establish what someone’s baseline is and go from there. Whatever. Dad is too cute. The first few days here they would ask this and it was always a 4 or a 5. No matter if it was after being out of bed and moving all around, or awakened mid snore....”hmm...it’s probably a 4 or a 5.” These past few days dad’s pain has been the biggest issue for him. He was moved from the ICU to a regular floor on Monday, and they took him off of his epidural on Tuesday. Almost immediately he started feeling intense pain over his entire incision site. The past couple nights he has had a lot of pain, even where it has been a 10/10, so for him and his standard 4 or 5, I knew that he was miserable. At this point the doctors are trying to wean him off of some of his IV pain meds but increase doses and frequencies of oral meds in order to transition him to going home. They suspect as long as he tolerates these changes, he can go home tomorrow morning. We don’t know yet if this will be the plan, depending on his pain control over the next 24 hours, but we are hopeful that the doctors are so happy with his progress. 

Things have been changed a little over the week, but he has been set up to eventually get on a Mon/Wed/Fri schedule for dialysis, and will be going to Lancaster General’s outpatient center until he is recovered from his surgery and cleared to be able to look more into the home dialysis option. Until then, he will have early morning dates with the dialysis center, but at least they found him one close to home. They also set him up with a dietitian consult yesterday, and she talked to both mom and dad about foods he CAN eat, amounts of sodium, potassium, and phosphorous that he is allowed to eat, how to read food labels, and also the big “no nos” for renal diets. It is all very overwhelming as it cuts out a lot of foods that he likes, but with some good recipe books and websites, we are getting prepared to help him transition with his homecoming. It might be tough, but so far he has been so good with things, reading labels, telling the nurses he can’t eat things that come on his tray...I am very impressed. The dietitian said a big “No.” when he asked her if he could have a piece of pizza with half the sauce and half the cheese. Her response was to make an english muffin pizza with low sodium sauce and cheese. Although he didn’t say this to her, while recalling the  story to me, his response was “well, that’s real nice, but I’m not a six year old. I want my pizza.” 

Dad has been amazing. I can honestly say that he is my hero. He has gone through so much already and has a long road ahead. I stayed the night again last night so I could be here with him for dialysis this morning. Of course dialysis got bumped to 11:45, but I’m still glad I stayed the night to help him with pain issues, asking the docs questions, and just to be here to support him and love him and fix his pillows and get him more cranberry juice. He is my high maintenance little patient, but he’s allowed to be. I can’t imagine what he is going through. And in the midst of it all, he still finds time to take care of me and our family. He keeps his sense of humor, which is so important, and as we found out from the docs yesterday that they may eventually look at doing preventative treatments for any lurking cancer cells, he has kept a positive outlook that he will do whatever he can to fight it from coming back. He is handling all of the pain issues and the changes and the interruptions in his sleep from the knock knock knock lights on!, and the “squeezie” things (SCD’s) he has to wear on his legs, and the needle sticks and everything all so well.  I still remember when I got my ears pierced in third grade, and as the lady held the gun up to my ear, I watched dad quickly turn his head, wipe the sweat off his face, and walk in the other direction. Now he has to deal with all of these needle pokes to himself, but is doing amazing prepping himself and getting himself through them even if he hates them. We hope to get more details from his doctors today about his discharge plan, and hopefully his pain is well controlled the rest of the day and night so he can get home and get some good rest, good food, and good love from his family and his grandson who can’t wait to see his Poppy. We don’t want to rush things, but we are eager to get our dad out of this place! 

Mike and I plan to stay here to help out with things the next few weeks, and in the meantime I am praying and searching for a job close by. This is looking harder than we thought, and we don’t know if we will be able to stay close, but we are trying. Keri and Angus are here until next week, and I am so glad they are here to help with everything, and that little Calvin brings all of us so much joy and so many smiles. I know I have no control over what job comes to me, and even if it is not on the east coast, even if we have to travel far away again, I know things will work out. They always do, even if it’s not how you expect them to work out. That’s about it for now. Another day is wrapping up, same old view of gray skies out of the same old hospital window, same cute dad sitting next to me hoping dinner arrives soon...mmm...speaking of dinner...I’d say my hunger level on a scale from 0-10 is, ooohh...about a 4 or 5. :D

Blanket Mummy

After spending the night at the hospital on Thursday and getting only about 2 hours of sleep off and on, I got up around 6 am, got changed, and started packing up our things. Soon after I woke up, one of dad’s docs on the surgery team came in to check on him, and following that at 6:30 am the anesthesiologist arrived to discuss getting an epidural to cover his post-op pain. We were then very quickly whisked off by transport, with me literally running in tow carrying an armload of heavy bags, having very little help from the staff, and trying to comfort an emotional, adorable dad on the stretcher in front of me. We got to the holding area where dad got his epidural like a champ, and in no time we were saying goodbye at the entrance to the OR. Dad looked so brave despite all of the fear and frustration about what he was about to endure. He had told me earlier that morning that he just wished he didn’t have to do this. I can’t even begin to describe the amount of pain and anger that I feel when I think about what he is going through, and what he will have to go through to fight for his life. But I told him that morning that the way we need to look at it is that we are getting this tumor out of his body, this thing that isn’t even supposed to be in there. Getting it out is a huge relief to me, and even though he is losing his kidney, now we know that this freaking tumor can’t control him anymore. 

I watched as his cute little bald head rolled away through the doors, and I knew I needed to just trust that the guys in green would take care of things. Fighting back tears, I got into the elevator with my plethora of luggage, and knew I at least needed to hold it together until Mike arrived. Until then, I needed to sit down, get the bags off of my shoulder, and pray that someone showed up soon with a breakfast sandwich and a large strong coffee. Soon everyone started to show up, and we eventually got a call from Dr. Harpster around 11 am that they got his kidney out, and were now working on the tumor. Around 1:30 he called and the tumor was out and dad was in recovery. They had to get the tumor out of his vena cava, and in the process cut off the edges of the vena cava that were touching the tumor. His tumor had grown so much that it was pressing against his liver, and they had to scrape it off of the liver. Dr. Harpster said that his liver remained smooth afterward, so he was not concerned that it was actually attached to the liver. The tumor also grew into his diaphragm in one small area, so they had to cut a hole in the diaphragm to remove the tumor. This caused a pneumothorax, which is air in the space around the lung causing the lung to collapse. Because of this, they were keeping him intubated until they got the chest x-ray showing that his lung was re inflated, which would clear him to be extubated. All of the lymph nodes around the kidney were removed as a precaution even though they looked ok, and the surrounding area appeared cancer free as well. 

After getting the news that his surgery went as well as they could have hoped, we waited a couple more hours until we heard from the PACU that it was OK to see dad, but that he was still intubated. Mom and I came up first to see him, and when we got in the room he was starting to wake up. He was nodding yes and shaking his head no when asked questions, and squeezing our fingers. He was very shaky from the anesthesia and from the pain of having the tube in his throat, and his fingers were freezing cold and white. I asked him if he was cold and he shook his head yes, and the nurse gladly went to get him heated blankets. She was so sweet to him, and bundled him all up from head to toe. She wrapped the last toasty blanket around his head and you could see the relief on his face. He looked like the cutest little blanket mummy around. 

Finally, after more waiting, they moved dad to his bed in the SICU (surgical intensive care unit), and we were able to see him after he was extubated. It was a refreshing sight to walk in and see him sitting upright in bed, smiling at us, and completely awake. He was having some intense pain from his incision, which is probably about 8 inches long from his right lower side up to his mid abdomen, and also pain in his shoulders and back from laying so long.  He was lifting his arms up over his head, to the side, wiggling his toes and fingers, until he felt a little more stretched out. He was very curious about his incision as he studied the dressing. He kept finding little bits of tape to pull off his arms, and inspecting all of his IV’s. He kept trying to push himself up in bed without the nurses help, and wouldn’t listen to me when I told him to wait, but as soon as the nurse “yelled” at him and told him he couldn’t push himself, he said “Oh, I can’t?? OK.” He was so thirsty, but because of having the tube in his throat, he needed to wait at least an hour to drink, so the nurse was giving him mouth swabs with cold water. After the nurse slipped out of the room, he started using them as spoons to eat the ice chunks. As we were getting ready to leave, he said “I think I’ll sneak a little sip” with his eyes squinted and a little smirk on his face. It was good to see the stubborn fighter that I know. I think I know who I take after :)

Overall, the day was exhausting for everyone, but we were happy to see dad with a little more spunk. This morning I overslept my alarm and my goal of getting to the hospital by 7:30 turned into 10:30. Oops. But dad is doing OK, just in a lot of pain from his incision. He already had his first round of dialysis this morning and did great with it. Stay tuned for more updates, but for now, thank you to everyone for keeping him and us in your thoughts and prayers and for checking in throughout the day to see how we were all doing. Dad did awesome, and continues to do so. He’s our strong little blanket mummy.

Back Home

It’s hard to believe that our 5 months in San Antonio have already come to an end. I remember the first day we arrived. The sun was beating down on us as we got out of the car. I took in a deep breath and thought, “This is it. Here we go”. I remember moving all of our suitcases into our temporary home at the Extended Stay and being given a warm, hearty southern welcome by the hotel’s greeter,“Dolly” (as I liked to call her) with her bleached blonde hair, bright red lip stick, cowgirl boots and deep southern drawl. I thought, wow, we’re in Texas! Turns out she was one of a kind, but it made me smile nonetheless.

Shortly after we arrived that day, we ventured out to find the local dog park for our friend and good sport Clover. I still remember feeling like such an outsider. I still felt so displaced, a little lost, and completely terrified. Here were all of these Texas people and Texas dogs and Texas trees and they weren’t mine. I was far from my comfort zone. Mike had a similar experience at the H.E.B., our local grocery store. Culture shock hit us hard that week. It’s funny to think back to how we felt those first few weeks, and how much has changed since then. Our time in San Antonio started out with a call about my mom’s stroke, and we were faced with this huge, scary event as we were transitioning into our new life. Now as we were wrapping up time in TX, we were again being dealt another difficult, painful hand as we discovered another tumor on my dads other kidney. Again, this all started at a time of change and transition. 

I never thought that any of these things would happen as we were pulling out of Pittsburgh back in September and beginning our exciting journey. There is no doubt that this journey has been an incredible experience, and I can’t even begin to describe what amazing blessings have come to both Mike and I during our 5 months in Texas. Even with all of the bumps in our road, I know that we both have grown in different ways. For me, I was blessed with some amazing friends to not only help me with all of my transitions, but to love and support me in the joyful times as well as the challenging times. Along with this, I was able to overcome anxiety related to going to work, which had been one of my greatest burdens over the last 4 1/2 years of nursing. I have become more confident, and for some reason it suddenly hit me and actually sank in this time, that it doesn’t matter if I can’t do everything - there is no way I will ever know everything when it comes to nursing - but that I am confident in who I am, what I do know, and that I don’t have to be afraid to ask others to help me when I don’t know what the heck I’m doing. 

So all of this brings us to the present. I have had a hard time trying to describe to people what I am feeling at this moment. I guess the best word for it might be adrift. As I leave behind some great memories and incredible friends in Texas, and look forward and see a very long unknown road ahead, while at the same time still having no job (although a couple good leads), living at my parents house, and transforming into Nanny Kate ;), I feel somewhat like I am floating in this in between phase of life where I am holding onto the past and present happy moments to get me through the challenging times to come. 

As I write this, I am sitting in my dad’s hospital room at Hershey Medical Center. He was admitted today and a central line was placed. This is an IV catheter that goes in through the vein in his neck, down into his chest near his heart, and comes out into two ports to his upper right chest. This will be used following his surgery for dialysis until they can look at other options for home dialysis once he has healed and recovered from surgery. He did amazing with this fairly quick procedure, and bravely completed step #1. Several different doctors came in to talk to us about what to expect tomorrow for his surgery to remove his right kidney, and informed us that he would be the first case tomorrow (Friday) morning. Because of this, I wanted to stay the night with him at Hershey so someone would be here to send him off. I might be loaded down with my bags, his bags, the picture frame from Calvin, and a very large coffee, but at least I will be there for myself and my whole family to tell him that we love him and to hug him and to tell him that we will get through this all together. I am just so happy to finally feel like I am able to do something. Even if it isn’t much, it’s something. I am more then happy to take on the role of Nanny Kate. It has been a long day and a rough night so far, with some ups and lots of downs. But after all of the chaos of the day - the noise and the waiting and the crying and the talking - the lights are out, the TV is off, the floor is calm and quiet, there is a low soft snore in the air, and dad is finally asleep. It is kind of nice to be sitting here on my little recliner (since I opted out of the suspect looking cot that they so kindly ordered for me), and to look over and see my dad, who I love so much. Despite the fact that his situation sucks...it is bull shit...I know how strong he is, and I know that he and my mom will get through this with all of us fighting side by side. I have faith that God will carry us through this inevitably long road, and that he will help to give us peace and joy as we overcome one step after another. I am so proud of my family.

“When the future seems uncertain, like the coming of a storm. You’re loving father carries his children, when they can’t walk anymore. No matter how the wind may blow, it cannot shake the sun. Lay your sorrows on the ground, it’s time to come back home. It’s time to come back home.” - JJ Heller (see link to song below)

Life Updates

It has been really hard for me to get motivated to write recently. A lot has been going on the past month in my family, and between trying to deal with all of that, working nights, and sleeping when I can find time to sleep, I’ve been pretty beat and just get tired of talking about it all. I know that I have not been able to call as many friends as I would like, and I am so sorry to all of you if this is the first that you are hearing anything, but please know I will try to call you all soon. But for now this is the best way for me to process and explain things to all of you. And I apologize ahead of time, because this might be a long one...you have been warned.

On Saturday, Jan. 22, I was awakened to bad news. Why is it that every time the phone rings these days and it is one of my parents, I am worried that it will be to tell us that yet again, something happened. “Dad has cancer”, “Mom had a stroke”, and now for the second time, “They found a tumor on dad’s right kidney”. You’ve got to be fricking kidding me. I was still asleep after being up most of the night with my crazy schedule when Mike came into our room. You know it is never a good sign when someone starts by sitting down, and follows with “I just got off the phone with your sister and your mom”... I said, “Please, No. What now?” 

So many things have happened since then, the news constantly changing, plans going from A to Z within days; it’s been an emotional roller coaster. The initial plan seemed “easy”. Dad’s doctors thought that since there were no signs of metastasis outside of the new tumor, they would be able to do a partial nephrectomy to remove the tumor and a portion of dad’s remaining kidney. In the meantime, other scans were done and a biopsy of his lymph nodes was performed, and everything came back clear with no signs of cancer spreading. But with that bit of hopeful news came more bad news. The doctors were afraid by looking at the CT of his kidney that the tumor was actually bigger than they originally thought and they feared that they would not be able to do surgery without having to remove his whole kidney. If this was the case, it would place him on dialysis and a transplant list where he would have to wait 5 years until he was “cancer free” before taking that next step. Because of this fear, the doctors scheduled a procedure called an embolization which was done last Wednesday at Hershey Medical Center. With this procedure, they went in and stopped blood flow to the tumor which is supposed to prevent the tumor from growing and hopefully even shrink it. In addition to this, they may start him on an oral medication that works similar to chemo, which would hopefully help to shrink the tumor back even more so that a partial nephrectomy would still be an option in the near future.

Of course with the embolization procedure, as with any, there comes a lot of risks. Again came more discouraging news. They planned to keep dad in the hospital for a couple nights in order to monitor his kidney function. After a couple days there, dad’s levels were too high and the doctors told him he is basically in stage 3-4 renal failure. As his levels continued to elevate, they eventually stabilized enough that the doctors were hopeful the levels would start coming back down, so they sent him home last Sunday with a whole list of follow up appointments as well as more lab visits to recheck his kidney function.

Today’s appointment with dad’s surgeon brought with it more confusion and stress, and a reaffirmed realization that we are literally going to have to take each bit of news as it comes, process it, and find a way to get through it all together. Although it sounds cliche to say “let’s take one step at a time”, unfortunately it looks like that is what it is going to come down to in this inevitably long, exhausting journey. Along with dad’s doctors, we don’t know what is going to happen next, but we must hold on to hope as we go.

This has all been a crazy, emotional, shitty month for our family. I am so grateful for my sister and Angus who were able to be there for over three weeks helping my parents out through all of these tests and doctors visits and phone calls and up and down news. My sister was a wonderful mom to Calvin, while also being an awesome daughter to our parents. She did everything from taking care of her busy little man, calling friends and family with updates, cooking, cleaning, and most importantly giving moral support and love to mom and dad. Mike and I were able to get home a couple weekends ago, which was initially for dad’s surgery before the plans changed. Although I didn’t feel like we did very much being there, it was good for me to see them and to hug them. I just love them so much it hurts. It was also helpful for my sister to have a little break at times, and such a wonderful time for Mike and I to be the aunt and uncle that we have been dying to be to our perfect nephew. Also, I know that it meant so much to mom and dad to simply have us there to love them. 

Although all of this is hard for me to process and accept, the most difficult part is watching my parents have to struggle through all of this again. I feel helpless being so far away, but mostly being so out of control of it all. It breaks my heart to see my dad battling with all of these emotions along with his physical pain, and to watch my mom become that rock again in a time when she needs her own shoulder to lean on. My mom has amazed me, and although she tells me that she couldn’t do this without my sister and I, I have seen how strong she is and it is such an encouragement to me as a wife to see how she loves and supports and fights for her husband. I know things are crazy right now, but I have hope and I know that we will fight our way through this, come what may. We have each other, we have our family and friends supporting us, and we have hope and faith in God’s hand in it all.  I realized again just recently how both mom and dad have each already been healed once in the last two years after major life threatening events. Why shouldn’t we believe that there is hope this time when we have seen how those crappy situations were turned around for the best? I have faith that things will be OK, but it may take a lot of ups and downs to get there. 

As far as our travel status goes, my contract will be ending March 19th - less then one month away.  When all of this came up, without any doubts or second thoughts, Mike and I both knew that we wanted to try to go closer to our parents for a little while. Regardless of what happens, we know that we want to be there to help with whatever comes up, even if it is just going to doctors visits with dad or cooking them a meal or making them go out to have a little fun. In whatever way we can, we want to try to support them right now, and that will be a lot easier if we don’t have to buy a plane ticket every time we want to help out. That being said, I have been looking around the Lancaster area as well as Baltimore, Philly, and other east coast areas. I haven’t gotten a placement anywhere yet, but I am working on it and trusting that maybe this is another reason we were meant to travel. It is good to know that we are flexible, that nothing is permanent, and that we can just be where we need and want to be.  I know a lot of people feel helpless, as do all of us, but what we really need now is just to know that you care. Prayers, encouragement, and love is what really helps right now, and I thank all of you for doing these things to help support me and my family.

Happy Listening!

Rain. There is something so powerful about it. As much as I love a beautiful, warm, sunny day to get outside and be active, there is something equally as wonderful about a rainy day. Maybe not the strong, scary downpour that makes you feel like your car is going to be washed off the highway, or the giant puddles that you inevitably end up ankle deep in no matter how much you attempt to avoid them, but that peaceful, steady rain that taps against the roof and the windows while you settle yourself on your sofa with a blanket, a mug of steaming coffee, and a good book.  Sometimes I just like to sit and listen. This might be cheesy, but a lot of the time I think the rain is telling me something (or is it those voices in my head again? I’m not really sure). These are some of the best moments of meditation for me where God is telling me to stop everything and just listen for his voice. Sometimes he speaks, sometimes he doesn’t, but almost always, I feel his peace.  Since we’ve been in San Antonio we have only had a handful of rainy days, and for this I am so thankful. But because of that, I feel like each one of these rare rainy days is a little present to me with a tag that reads “For: Katy ... Happy listening!”  

The last time we flew on an airplane the weather was terrible. We were heading home from Colorado that night and, as usual, the minute we hit bad turbulence, I thought we were going down. I began to formulate my game plan of who to call and what I would say in my farewell message to them if we started our plummet to the earth. Finally, to calm my nerves, I put on my headphones and listened to some chill, peaceful music while I turned out my overhead lamp and looked out of the little porthole-like window and onto the huge dark sky. What I found amazed me. How had I not noticed the beauty that lay out there in the midst of my panic over my extremely unlikely death that was about to occur? I’m not sure if I can do this scene justice, but I will try. I don’t know if I’ve ever felt much closer to God than I did at that moment. It was almost as if I was eye level with him and what he see’s on a daily basis. Out in the distance was a vast stretch of storm clouds miles and miles long. As my music played through my headphones, the lightening bolts seemed to dance along with it. With each bolt of lightening, the whole night sky lit up before me over and over again, as if someone was directing an orchestra where the spot lights are flashing on and off to capture each of the amazing performers in action. Every flash left a distinctive mark in the sky, and as suddenly as they appeared, they vanished just as quickly. I’ve never seen 5 or 6 or 7 bolts of lightening strike at one time, and what made it even more intense was the fact that I felt so far and separated from this scene while at the same time, like I was a part of it all. I was completely at peace and in awe of this power and knowledge that is so beyond me.

Needless to say, I was no longer worried about plummeting to my death. If I was going down, well then at least I could come back up here and enjoy this scene a little longer instead of passing it by and heading back into empty, dark skies again. I could have stared out of that window forever enjoying the beauty and the power of that moment, but like these rare rainy days, it is a moment that I will hold onto in my memory, and a moment that spoke to my soul like nothing else ever could if it was in front of me every day. So next time you hear the tap - tap - tap of the run off from your roof, stop what you are doing, curl up on the sofa, and take a good, long listen to the rain. That rain sure has a lot to say.

* For those of you who might like the full experience, or at least part of the experience that I had, listen to this song, then maybe listen to it while re-reading the visual I attempted to make for you all. It might not impact you as it did me, but this is just a little taste of what was spoken to me :)

      

A New Revelation

Texas driving and I have not had the best relationship since day one. I can still recall the first week of living in San Antonio when Mike urged me to practice driving on these insane 3 to 5 lane highways. I thought I was going to pee my pants I was so terrified. Not only did I get beeped at numerous times on that first venture, but I’m pretty sure I broke at least 10 laws, and that was with me WEARING my glasses, which I never wear out of pure stubbornness. But I mean really, what normal state has a 3 lane highway that they consider the “access” road to merge onto the 5 lane highway?!? Come on people. Seriously. 

As time went on I got a few of my routes down pretty well...1) My trip to work. God forbid if there is any flooding or “snow” that closes down the I-10 or I’ll be calling off, because I know one way and one way only to get to work. 2) The route to H.E.B., the grocery store here in Texas. This is literally not even a mile down the road. Sad, I know. 3) Borders. How could I live without my bookstore?! and 4) a more recent discovery because it is more than 10 miles away from my front door - La Cantara mall. Other than these 4 places that I visit more frequently on my own, I either let Mike drive, or I’ll typically rely on Mo, my (not so trusty) 5 year old Garmin with her friendly English accent that only sounds English when she tells me to turn “Roight”. 

Just the other week I had a revelation. Thanks to my good friend Dan, a local to San Antonio and one of those “Texas drivers” that I like to complain about, my eyes were opened to a whole new world of driving. Now granted, friends, I by no means am doing EVERYTHING wrong, but apparently I might be deserving of some of these honks and Oh so pleasant expressions combined with that pretty middle finger as they pass me by.  As I was driving Dan home one morning after our long 12 hour night shift, I was explaining to him my frustration with Texas drivers and couldn’t decide if they are in a hurry or just lazy and rude. As I was saying this, someone “cut me off” and laid on their horn. What would you do? I yelled “SEE!?”  Dan, trying to be the nice person that he is, informed me as kindly as possible that in fact, I was the one who cut them off. 

Revelation:  I’m the “Texas driver”. 

I still don’t feel that I am completely at fault, because in the rest of the country, the “yield” sign is for the cars merging onto a main road. But apparently, here in good ole Texas, the merging cars are allowed to cut across all three lanes while innocent you, minding your own business in your quiet little lane, have to yield to these obnoxious fools. But the tricky thing is, this doesn't apply to ALL merging lanes...only some!! So you better be on the lookout for that yield sign!!

It’s good to know that for the last 3 months I have been cutting off numerous cars wherever I go, while at the same time cursing them and trying to bury my rage at their terrible driving skills. I think that in addition to having to get a TX nursing license, it should also be a requirement that to live in Texas, you first have to go through a week or two of driving lessons. Keeping you in the dark like this just isn’t "roight".

A Taste of Home

As we posted before, there are definitely times where we get to missing home. So, it is always nice to see something that reminds us of Pittsburgh. One of the things we see most often is Heinz ketchup. So, a big thanks to Heinz for making the worlds best ketchup, it gives us something to remember Pittsburgh by.