Life's Journey

Sarah started this website for the same reason she did pretty much everything else in her life… to help others. She wanted to create a record of the challenges she faced, complications she endured from each treatment, and what each treatment option she tried entailed so that anyone else that was unfortunate enough to find themselves in a similar situation would have some idea of what to expect.

As time passed the website evolved beyond its original purpose and really became a window into her life. Her mission to share things in an honest and open manner on the site began to extend beyond the clinical to the personal. With that evolution she allowed all of you to get a peek at what I was lucky enough to experience every day. I know she has inspired so many because many of you have told us as much. Sarah very much enjoyed hearing from people that decided to take their own leap, be it joining the Make A Wish foundation, taking the big trip they've been putting off, making her Bday random acts of kindness idea their own, or reconciling with estranged relatives (just to name a few). Sarah never set out to have such an impact on so many people, but as tended to happen with her, she absolutely did.

She is the most incredible person I've ever met. She is also the strongest, having endured more these past 2 months than any human should. It was my absolute pleasure to care for her in her time of greatest need and I'll always remember the way she would look at me, smile, and tell me that she loved me every time I changed her dressings & treated her wounds. Even at the end, when she could no longer speak and barely move she still had that twinkle in her eye and was even able to manage a small smile when I recounted one of her favorite memories or told one of my stupid jokes. She passed peacefully yesterday while I was taking care of her dressings. So peacefully, that I didn't even realize it until I had finished and looked to her face for that reassuring smile. Goodbye, my Wife. The 6 years we had together were the best of my life and I hope and pray that we will meet again in the next reality.

To paraphrase my brother, the World is a dimmer place from having lost Sarah's light late yesterday afternoon. She will live on forever in my heart and in those of many others.

Sending hugs and smiles,

Roy

This past Sunday morning Sarah awoke and was more alert then I had seen her in weeks. As we talked about all kinds of things under the sun we both realized this was the best morning we've had in a quite a while. Then she said she wanted to go home, so that's exactly what we made happen the next morning.

During her 5 night stay in the Hospice House the team there was able to come up with a better medication regimen as well as a methodology to handle the worsening fistula situation that brought us to them in the first place. They were also able to train me up on both accounts making it possible to grant Sarah's wish.

The Hospice House was nice, way better than either of us had anticipated, but there's truly is no place like home. Sarah is now pretty much confined to the hospital bed at our house but if there ever was a spot to spend some serious time, she's set. She's able to see South Mountain in our back yard out our large living room window to her right and she has the "way too big TV" (her words) to her left so she can catch up on all her shows she has recorded. However, today she didn't want to watch TV, didn't even want it on (something I hardly ever do). With the windows and doors open she was able to hear the birds chirping, the breeze running through the trees, and the soft waterfall from our pool. I am grateful that we were so lucky to have built a life together that allows her to enjoy such tranquility when she needs it most.

-Roy

Unfortunately, Sarah has reached the point where she is no longer able to provide updates via her/this site. She did however, ask me to post a quick one to let everyone know the latest. To say that she is not in a great deal of pain, that she is now under excellent 24/7 care in a serene environment at one of the Hospice of the Valley care facilities, and that she greatly appreciates all of your thoughts, well wishes, and prayers. She is at peace. Ready and waiting to greet the next reality that awaits her, and one day us all.

Sending hugs and smiles,

Roy & Sarah

What day is it? I've lost all sense of time, my days are running together, I'm having a hard time determining if its day or night. I sleep often and this is how my time has become jumbled. In and out of the hospital is all just a smear of time. I can't tell you how many days I was in the hospital this last time or how long I've been home for that matter. What I can tell you is that I've had some really close calls while in the hospital. There were times when the nurses had to pull me back to this reality. I was surrounded by "beings" or shadows and senses of a presence. Everything was very peaceful and positive energy, I was never afraid.

I'm not sure that I can say exactly what happened but I felt torn between two realities. I was talking to people that weren't really there. I was laughing with a presence that I cannot guarantee was really there. I would reach for things and I would interact with things that weren't really there. I still don't know what all this means but I feel like I'm being welcomed to another plane or reality.

For now I am at home enjoying my time with family. I have three bags attached to my pelvic area that I have to manage. Two of the bags are set up to fissures that opened up out of no where. So the bag is set up to catch any output from the wound. I have home health care nurses that come out on an as needed bases. Someone will be here tomorrow to change all my bags and set ups. I stress a lot about the bag leaking Or the wax not sticking and everything oozing everywhere.

I'm not sure how to continue this blog post. I feel that I need to be completely honest here but this is not something I ever thought I would have to write about. I am dying. I don't think I can say I have months at this point the end feels very near. I don't know how to begin to say goodbye. There are so many of you out there that all mean so much to me. My dearest of friends who have seen me in the best of times and the worst of times I love you all very much, Each of you have done so much to help and support me and more than anything you've given me hope and friendship,

I can't begin to thank each of you for all of your support and love through the past few years. This has been a difficult journey and I cant imagine getting through it without all of you by my side. You have helped me find strength and hope when I was at my lowest. There's no way for me to truly thank you and tell you how much you mean to me, I do not feel afraid. I feel sad to say goodbye and am finding it incredibly hard to let go of that, But, I know that I must in order to move on to the next reality that is waiting for me,

Sending hugs and smiles

Sarah

It has again been too long since I last wrote. Thankfully Roy was able to get in to give you all some quick note updates on my status. It's been a really horrible 2014 so far for me! As Roy mentioned in his last update, all I really wanted was to go home at that point. I ended up in the hospital for just over 2 weeks. That's way too long. I missed all the creature comforts of home. My hospital stay was quite the roller coaster as well. I've been so miserable and sick that I can't even begin to put it into words, which I think has been part of my delay in writing this posting. But here it goes….

I got home from the hospital on Tuesday (it’s now Saturday). I got the best welcome home committee in Ben! I don't know who was more excited? Him or me? Roy helped me in setting up a "nest" around big red (the recliner chair) which included by tracking book, drugs, water, remote control, tissues, sick bucket & washcloth. Early that evening a home health care nurse came to the house to teach Roy how to give me TPN. Guess I should back up a step… One of the reasons I was able to come home was because Roy would be able to hook me up to TPN (TPN is an IV drip of nutrients, basically I'm being feed various nutrients and fats, etc straight through my IV line). So the nurse walked him through the whole process no problems. So that night I tried to sleep in my own bed but failed miserably. This TPN was intolerable to me - it was making me vomit once each hour. It was painful night.

They were giving me TPN in the hospital on a 24 hour drip (meaning that it was running all the time for 24 hr straight theyn they would replace the bag and do it all over again). They sent me home with a 14 hour TPN thinking this way it would be running at night while sleeping then I wouldn't have to be hooked up to something. I liked this idea! But, it didn't work so well because my body couldn't take that TPN for that amount of time. Ugh, sigh, stomps feet! Once we pulled the TPN line I noticed how much better I was feeling, the nausea was subsiding a little, I was moving around a lot more, things just all around started feeling better. I spoke to the home health pharmacist about my TPN blend and how I couldn't tolerate it. I sent Michele (AKA Supernurse) A text requesting that I only do TPN every other night? She was good with that I had that cleared by DR Kim for me who in turn relayed this to the Pharmacist (George). It was also decided that I should get bare bones min in the TPN for now since I am not tolerating the heavy doses. So they had to send out a whole new shipment of drugs.

Our shipment arrived faily late yesterday and included bags of just fluids to hydrate me between sessoins of TPN. We decided to start with that. Roy got me all hooked up for a four hour run of fluids. Once that was up it was already 11:30p but we both knew I had to get the nutrients in the TPN. So he hooked me up… this drip is still running and it's 2:00 wont be don’t til 5:30ish That seems like forever away right now….

So, how am I feeling right now… awful! I'm like a constantly nauseaus zombie. I'm taking lots of pain meds which are working well… the pain is mageable. The nausea gets me the worst. I am nauseas/dizzy 100% of the time. Some of this may be side effects from some of the other drugs I'm taking but we've tried all different combinations and the nausea persists… somebody stop the rollercoaster…. I was to get off!!!

That's where I am in a nutshell right now. Hopefully my writing will come easier again and I'll have another post for you soon.

Hugs & Smiles

Sarah

Well as I write this I’m sitting in Sarah’s hospital room and she is fast asleep, so unfortunately we didn’t make our original goal of making it home by Superbowl Sunday. She’s been in the hospital over a week now and current hopes are that she’ll be able to come home by the end of this week. The recovery from this surgery has been very hard. Lots of pain, nausea, different medications, TPNs, respiratory treatments and even a couple of blood transfusions.

It appears that she has turned the corner for the better (knock on wood) as yesterday she was able to get out of bed and sit in a chair for 30 minutes and today she was able to walk a few steps around the hospital bay. Baby steps to be sure, but critical ones because at this point movement is imperative to promote further healing and recovery. As she always does, Sarah is taking on this challenge with remarkable courage and determination. Her drive to get back home to Ben, “Big Red”, her crap shows (as I call them), and our normal life as quickly as possible is propelling her to push through pain I couldn’t imagine. She’s still sleeping most of the day and is not quite up to posting updates herself but I know she will as soon as she is able.

-Roy

Sarah’s surgery last night appears to have been successful in both removing the high grade bowel obstruction and replacing the stent in her ureter. Unfortunately, the surgery had to be more involved than we had hoped due to the size and toughness of the primary pelvic tumor she has been fighting so hard over this last year. What this means is that a section of her bowel ~6-8 inches long had to be removed to bypass the tumor with the hopes of returning the bowel to normal function. This also means that her recovery will be a much longer and tougher one than we had originally hoped. The surgeon wouldn’t even venture a guess on recovery time in the hospital because with this kind of surgery it can vary greatly from person to person but when I pressed he guestimated between 5-10 days in the hospital. Sarah is back in her room now and starting to heal so she can get back to doing the things she loves. She misses Ben terribly so maybe I can try to sneak him in here again like I did last time

As with her last surgery (which was just over a month ago), thank you all for your thoughts and well wishes. I’m sure Sarah will post another update once she feels up to it.

-Roy

Time for another update my friends. I was sent to the Emergency Room yesterday (Friday the 24th) because of a bowel obstruction. As you know I've been having a lot of trouble healing from the colostomy surgery over the past few weeks. There's been vomiting and I've contantly felt "full" so wasn't eating much at all. I was trying so hard to keep eating and get things moving through the system but I knew in my gut that something was wrong. I kept my GI doctor (Dr. Kim) updated on everything. In fact there were a couple of times I had to go to the office for fluids and meds. So he ordered a small bowel imaging series. I had this done Friday morning. I have never had this done before so let me explain.

I arrived at the xray place and after check in waiting and blah blah we got started by taking a "before" picture of my abdomen. Then the nurse gave me two big cups of barium and told me to chug-a-lug. I was already feeling pretty nauseaus so looking at these two big cups was pretty daunting task. But, I convinced myself that they were vanilla milkshakes and drank them as fast as I could. Then they took another picture and sent me to the waiting area for 30 minutes before taking the next picture. The "30 minute picture" showed the dr that things were moving pretty slow so I was sent back to the waiting area but this time for an hour. This is definitely a test of patience. The "1 hour picture" showed that things were still moving slow and I was asked to wait another hour. I also had to drink this shot glass of what tasted like barium and gasoline which was supposed to help make things move through faster. Fingers crossed and back to the waiting room I went. It took about 20 minutes and this pain started coming on. It progressively got worse and worse in my abdomen area. I ask the nurses who in turn ask the doctors who said we need 17 more minutes before the next picture and I just had to wait. This was not a full medical facility just an xray place so it's not like they had pain meds and all kinds of doctors there. 17 minutes seemed like an eternity I was in so much pain. But I managed. The next "1 hour photo" showed the movement and SURPRISE the blockage! They found a high grade small bowel obstruction. Part of me was relieved to know that I wasn't crazy that there really was a reason I was feeling so sick and couldn't eat. The other part of me freaked out. And by now I was in so much pain that I was bent over crying. The drs at the xray place called dr kim immediately to see what I should do. I was sent straight to the ER. Everyone knew I was unable to drive so they called a cab service to take me to the hospital (this was of no charge to me). I called Roy and he met me there.

When I got to ER the waiting room was packed - great just was I needed at this moment another fucking lesson in patience. I asked for help at the registration desk, explained my situation and how much pain I was in and needing medication asap. They told me "tough luck kiddo go sit down with the masses"… so I did. About 10 minutes later they called me up for triage where I again explained my situation and my need for medication. The woman there was very nice and got me in stat. I got a bed in a pre-op area for basic treatment, pain meds, and waiting to get me registered with a room. Roy got there and I let go a little and started crying again. This was just all so hard to take in… what does this mean? Can they even do another surgery? I certainly can't live like I have been so what can we do about it? So far, no one had any answers.

It took a long time (yet another lesson in patience) to get me a room but finally they found me a little corner to call my own. And when I say little corner I'm not kidding. This "space" is just barely big enough for my bed. But at the time I just wanted a comfty spot. I spent Friday night in the hospital with no idea what next steps were or what tomorrow would hold but for now I needed sleep. This morning (Saturday) Dr. Kim came in and saw me. He hadn't seen the xray images yet but read the dr's report regarding the obstruction. He really didn't have any answers at this point either. He wanted to go home to review the xrays and have another one done today for his review as well. The one today showed that the barium is still just sitting there not really moving past this blockage. This means I'll be in the hospital for awhile.

Right now they have me on an ice chips only diet. I haven't eaten anything nothing nada since dinner on Thursday (48 hrs). I'm hooked up to fluids which I believe is the only thing keeping me going at all. Dr. Kim is supposed to come see me again tomorrow morning and hopefully he will have a good treatment plan ready. For now, what I do know is that the fluids, pain and nausea IV meds are really helping me out. I'm not getting much sleep because it's a hospital and I have no idea how long I will need to be here. And, all I really want is to feel like a normal person again. Someone that can plan trips and fun things to do… right now, that just isn't an option - I'm taking it 2 hours at a time right now (because that's how often I can have pain meds ). I also know that over the past two days I have become a much more patient person than I was before.

Sending hugs & smiles!

Sometimes I find myself looking in the mirror and wondering who this person is staring back at me. It can't be me? This woman looks sad. She seems as though she's seen some of the darkest shades of sadness in her life, you know those deep dark corners that no one should ever have to experience. This person looking back at me looks sick. Her eyes are pale with dark surroundings, she is tired. She appears malnourished and underweight. She looks as though she is complacent just being there. She is not smiling, she is not crying, she just is. Could this person really be me?

It's sometimes difficult to face this person in the mirror. She is the reality that I try to forget. Maybe forget is the wrong word… I try to overcome. I don't want to be this person looking back at me. I want to be strong, I want to be happy and healthy. But I recognize that unfortunately that is not my reality. So how do I deal with this?

I've written often about this but I figure it can't hurt to talk about again, and again it is applicable. I came to the realization some time ago that I don't get a choice in so many of the things that are happening in my life. I don't get to choose if I have cancer or not - I just do. I didn't get to choose to have this colostomy surgery - I had to in order to survive. What I do get to choose is how I deal with these crappy cards that are consistently dealt to me… and that, I believe, can make all the difference. I can choose to let these life challenges bring me down to a deep dark hole or I can choose to make the best of the situation I am in. Why would I want to focus on the negative with the limited time I have left? I choose to live each moment and be as happy as I possibly can. I choose to empower myself and check things off my bucket list. I choose to smile and laugh and love.

If I'm being completely honest with myself over the past few weeks it's been really hard to live up to my own goals. I don't feel like smiling or laughing, I feel like curling in a ball and crying. The recovery from this surgery is much much harder than I thought it would be. I mean I knew it was going to be life changing but I have recovered from some big surgeries before and this is completely different. Everything that goes into my body impacts my recovery. I've had so many ups and downs these past few weeks. I'm trying to learn what my new body can and can't handle. It really is a new body, it's all functioning different than before this surgery. This is a big deal, this was a big surgery, this is a big recovery.

So when I look at this reflection in the mirror, I sigh as I recognize that this is my reality… for now.

Sending hugs and smiles

Sarah

Since my last post there have been good days and bad days. I'm living on quite the rollercoaster lately. The healing from my surgery seems to be going well. I'm 3 weeks out from surgery today and I feel like it's healing well. I have a home health nurse that comes twice a week to help me change my entire colostomy set up. She's super nice, her name is Lupe, she is a petite girl with dark hair that often says "cool beans" which makes me snicker a little. I'm glad she is there to check my wounds and make sure that I know what I'm doing. And she checks all my vitals and tracks my overall health and pain levels.

Things seems to be "Flowing along" quite nicely with this new system. I was starting to become almost regular. Then I didn’t go for a day. Then another day. On day 3 I was sick. I was up all night vomiting. My stomach was bloated, I hadn't "pooped" in 3 days. I didn't sleep at all the night before, I was a hot mess. My tummy hurt, nothing was moving, I texted Michele who told me to come in for fluids. I went straight into the office. I'm so grateful to have Michele here holding my hand. She took me in an exam room to do a quick check on things and just to let me cry a little. Dr. Kim (the GI Surgeon) came in to do a quick exam of the stoma - he wanted to check for any noticeable blockage. He didn't find anything and wasn't sure what was causing my issues. We talked a lot about what to do next. They wanted me to go to the hospital where they would run scans to look for blockage and take appropriate action to alleviate. I was not super keen on let's go to the hospital so I asked for other options. He said I could go home after fluids with a super intense laxative. The deal was if I couldn’t keep the laxative down I had to go to the hospital. Or if I kept it down but things didn't start moving I was told to go to the hospital. The last thing I wanted was to end up in the hospital again so home treatment it was… I was instructed to drink half a bottle of Magnesium Citrate, this stuff is like the powerhouse laxative. It's like drinking a salt lick. It's really hard to keep down when you feel fine, in my condition I wasn't sure I could do it, but somehow I did. And eventually things started moving again. This was a horrible experience and something I didn't want to go through again. The next day I was still feeling better but noticed that nothing had passed. I thought maybe it was because I had just cleaned out my system and it would keep moving the next day. Well there was nothing the next day. Thursday, in the middle of the night, I woke up racing to the bathroom to find myself headfirst in the toilet vomiting… again. This was pretty violent though, there was an urgency that my body get that stuff out. Here I was starting the cycle again? What happened? What'd I do? I didn't understand and was feeling quite sick and quite frustrated. The next day was the bloating, vomiting, and no bowel movement. I went back to the doctor's office for more fluids and meds. Roy was able to drive me so they took advantage and drugged me up good! They gave me a super strong anti-nausea med that made me stupid loopy. Roy said I was talking in my sleep, reaching out for things that weren't there, responding to other people's conversations in the room… I was pretty out of it, which is exactly what I needed. This gave me a safe place to sleep and just let go since I finally stopped vomiting. Roy sat in a chair next to me and held my hand while I fell asleep. When I woke up I was feeling pretty loopy but slightly relieved from a small bowel movement. Hopefully this was the start of a trend in the right direction so I was sent home. But given the same warnings about vomiting and no movement meant go to hospital. I got home and within a couple hours I was vomiting again. It was really as though my body just had an urgency to get this stuff out of me, it was awful. I got through it and contained it but knew I had to get the bowels moving. Yesterday I drank 2/3 bottle of the magnesium citrate along with various softeners and laxatives. I was getting very nervous because nothing was passing. I was starting to feel some gurgling which I thought was a good thing but needed that to turn into more. I could tell that there was some thick stool that was holding things back but nothing I could do to fix it, just had to wait and hope for the best. Last night I woke up realizing it blew out and I needed help, I panicked and yelled for Roy to wake up because I needed his help. I contained as much as possible and ran to the bathroom and into the shower while Roy woke up realizing what had happened and went straight into "fix it" mode. We managed to get through the night but it was a long one. We both did things we never thought we would have to do and the cleaning continued into this morning. I'm like a skittish deer now… I feel a little better, not so full, no more pressure… but doesn't this mean that something wicked is about to follow? So far this seems to be the pattern? But this time we have something new, we are armed with nutritional information. Roy met the nutritionist at the oncology office and she gave him a bunch of info about good vs bad foods. The different reactions that food have, proteins, smoothies, eating habits, etc. We should have had this info before I was released from the hospital and maybe we could have avoided some of these crazy issues. Sigh All I can do at this point is be grateful that I have it now and follow it appropriately. Hopefully I will find balance and not have these struggles anymore.

These past few weeks have definitely challenged me.  I've been bottom of the barrel sad.  There has been a tremendous amount of pain.  I am humbled and humiliated.  I've had to fight as hard as I can just to get through that moment and on to the next.  It has not been easy.

I knew that having the colostomy surgery was going to be a life changer but I don't think I really understood how all-encompassing that would be. This impacts every aspect of my life. But if I can find balance I can find a better quality of life and get back to planning and enjoying the quality moments that I have - "cool beans!". There are still so many things that I want to see and experience, I'm not ready to give up on all that yet.

Sending hugs and smiles

Sarah