Stephanie Marie (Owcarz) Bradley

It has been a whirlwind 12 days. At one point my dad and I drove around 2200 miles in a four day period. All of this travel, combined with the normal busyness of the Christmas season has left me somewhat physically drained while leaving me mostly too busy to think. Let me first say that the services for Stephanie were all very beautiful. It was good to see friends and family that it had been a while since I had seen. I only wish it had been under different and better circumstances. Thanks you to everyone that was able to make it and thank you to everyone that wasn't able to make it but sent their thoughts, prayers, and cards and flowers.

I wanted to take some time to recount some memories I have of Stephanie. These will be in no particular order and may take more than one or two posts for me to finish. Please feel free to include your own memories in the comment section.

I remember our wedding day. As the doors in the chapel opened I saw Steph and her dad about to walk in. She was so beautiful. So happy. Her face on that day is one of my favorite memories of her. After our vows and a few pictures we rode to the reception in a 1947 convertible her parents had rented for us. This was a lot of fun as we got lots of honks and plenty of smiles. The reception was also fun, we split up for most of it, but then we didn't know how to cut the cake or toast, Stephanie's mom had to correct us.

I remember our first townhouse together. It was essentially a dump. But it was our home, and we enjoyed our time there. I used to make Stephanie go pay the rent because our dish washer was broken, and the property manager would give her a discount because he always forgot to get it fixed. While we lived here we used to have to bum off of our friends to let Ruekie out because I worked in Tulsa and Stephanie would sometimes have school or work all day in Fayetteville. One morning Stephanie woke me up. She told me the rapture was happening, she had heard the trumpet sound. A few seconds later the "trumpet" sounded again as the train made it's way through Siloam Springs. I teased Stephanie about this until we later learned another friend of ours heard and thought the same thing. Then I teased them both. This is a good illustration of Stephanie in last few hours. She was ready to go. Just as ready as she was that early morning at home.

Stephanie's last days and weeks were tough. When we checked into the hospital after Thanksgiving I was very worried about her. It wasn't until the Wednesday after Thanksgiving, when we got the results from the brain CT that I began to have hope again. As Steph recovered from her hypercalcemia, we were hopeful she would be released soon, we would go to Tulsa, and begin some sort of a clinical trial. Stephanie never lost hope. She never lost faith. She knew she was going to get better, she knew she was going to have a life, and she knew she was going to get to conitnue to decorate our house in Tulsa. On Saturday before Steohanie went home the doctor on call for Dr. B came in with Stephanie's Dr. Heels. They spoke to Stephanie about decisions she should make now in the event she coded. They counseled that in the event of intubating Stephanie she would most likely never have the tube removed. When they left we hugged and cried. Stephanie told me she still wanted her miracle. She wasn't supposed to be having this conversation. She didn't know what to do. On Sunday Dr. Heels again came by and talked to Stephanie some more. Steph still didn't want to discuss anything as you can imagine. Later Sunday I asked Stephanie if we could tell our families what the doctors hed told us the past two days. She said yes, but I had to make sure they knew we were still looking for clinical trials. She wanted everyone to know she still had hope, that she was still planning on getting better. I couldn't bring myself to tell anyone that day. There was a consultation set up for Steph on Monday with the pallative care team of doctors that helps patients make end of life decisions. I decided that after Stephanie made a decision as to whether or not get tubed we could tell everyone everything at once. I still regret not telling our families. Although I feel this is what Stephanie wanted at the time, I wish everyone had been able to be more prepared.
On Monday, December 14th, Stephanie woke up to go to her radiation treatment and was having extreme difficulty breathing. She made it down to radiation, Dr. Fields was walking by and took one look at her and sent her back upstairs because she was in such obvious discomfort. This was my first clue something was possibly very wrong. Dr. Fields does not let people miss their treatments. We got back to the room and Steph's 2 favorite daytime nurses were there. They became immeadiately concerned with the issues Steph was having breathing. They called for the lung specialist to come see her ASAP. He ordered a chest x ray prior to showing up. I was able to see it. Her lungs looked terrible. Her left looked solid and her right looked fuzzy (full of fluid). This scared me. When the doctor came in so did the two nurses. Stephanie was sitting up in a chair and realy laboring to breathe. The doctor explained he wanted to send her to ICU. The nurse stepped in and told Stephanie that this meant she would get a tube in her throat to keep her breathing. Stephanie's eyes got wide and she shook her head that she did not want that to happen. Then the nurse asked her if she knew that this meant it was probably the end. Again her eyes got wide and she shook her head again. They decided to take her to the ICU due to her indecision. When we got to the ICU and they moved her to the bed there they connected her to the BIPAP machine, which forced air into her lungs when she took a breath, no matter how shallow. She was continually becoming more distressed. My mom arrived at some point. The nurses upstairs had called Stephanie's parents for me and they were on the way. The pallative care team doctor and nurse came in at this point as well as the critical care doctor. They began talking to me about whether or not they should intubate Steph. This was a decision I did not want to make. Eventually after remembering all the things that had been told us by all the doctors, and also after thinking long and hard about what Stephanie would want I tol them not to intubate her, and to make her as comfortable as possible. This is the hardest thing I have ever done in my 26years of life. They gave her some medicine and she calmed down finally. Steph's parents arrived and later on so did her brother. Eventually, around 5:00pm Stephanie woke up and was lucid. I am so thankful for this brief time that she was awake and able to communicate. Her first response was to try to pull the BIPAP mask off. Later while we were alone I told her that I had made the decision not to intubate her. She gave me a classic Stephanie look that said "Why?" I told her everything that had weighed in my decision, she closed her eyes and nodded. Then she began working on the BIPAP mask again. I told her that the mask was what was helping her breathe more than anything else and she had to leave it on. She continued acting like she wanted it off. I told her to wait, and I texted her mom for them to come back in. When her parents and brother arrived back in the ICU room she took time to tell us all that she loved us. She told me twice. I think she was assuring me I had made the right decision on the intubation. Then she asked for the mask to come off. A nurse came in and removed it slightly, enough for her to tell us "Let me go! Let me go!" but then she realized she really couldn't breathe with the mask off. We put it back on and asked if she still wanted it off. She shook her hand to indicate she was unsure, so we left the mask on overnight. As a testament to the impact that Stephanie had on people, at about midnight the number of people at the hospital had swelled to include 2 more people from Illinois, 3 people from Little Rock, and several more from Luling. You all know who you are, and your presence was much appreciated. On Tuesday December 15th at just after 5:00pm I asked the nurse to remove the BIPAP mask and place Stephanie on just oxygen. She breathed for approximately 15 to 20 minutes and then she went home to heaven. We wept. We wailed. We grieved. We rejoiced. Stephanie lived in excruciating pain for about 2 months before passing. For a week she was unable to catch her breath. For a month she was barely strong enough to make it around the apartment. She lived a short life. She lived a full life. She met our Lord and Sacior with a grace surpassing any I've witnessed. She was my helper. She was my best friend. I am sad she is gone, I am overjoyed she is no longer suffering.

These are some lyrcis from one of my favorite bands, Stavesacre, the song is "Gold and Silver"
Do I see God in all of this? maybe all along
It's just that we're so small, and simply not as strong
Strong like wings of silver, and feathers made of gold
To carry heavy hearts, to cover all our helpless souls

To cover all of us

Under wings of Gold and Silver sometimes we have to hide
For shelter from this bitter winter at least tonight

This is a poem Paula sent me:
THE WEAVER, by Benjamin Malachi Franklin (1882-1965)

My Life is but a weaving
between my Lord and me;
I cannot choose the colors
He worketh steadily.

Oft times He weaveth sorrow
And I, in foolish pride,
Forget He sees the upper,
And I the under side.

Not til the loom is silent
And the shuttles cease to fly,
Shall God unroll the canvas
And explain the reason why.

The dark threads are as needful
In the Weaver's skillful hand,
As the threads of gold and silver
In the pattern He has planned.

He knows, He loves, He cares,
Nothing this truth can dim.
He gives His very best to those
Who leave the choice with Him.

Grace and Peace

Stephanie's Services

Stephanie's Services will be held at Bible Center Church in Luling, La. Viewing/visitation will be at 9:30am the service will be haeld at 11:00am.
There will also be a graveside service for her at 2pm on Saturday in Auburn, Al.
For the past eight months, while Stephanie has been in and out of the hospital, she has mainly stayed in what is known as 5 west. This is the cancer center in the hospital. During this time we met and grew to be friends with many of the nurses and staff that work there. If you would like to make a donation in Stephanie's memory please make it to the cancer center specifically. Donations can be made at the Our Lady of the Lake Foundation website.

We Have Such a Dim View

Scott Hodge, the man who married us, once told me that we as humans have such a dim view of heaven. Otherwise no one would say something like "I just want to see/do ____ before I die". If we truly understood what heaven was like there is no way we would ever wait for something on this Earth. Tonight just before 6:30 Stephanie was able to find out exactly heaven is like. She lost her battle with cancer, her body had just been through too much. The tumor in her left lung had grown to nearly replace the lung, pain was not subsiding in her arm from the growth in the chest wall, and her right lung was full of fluid. She fought hard, and she fought long, but it was just too much.Today marks eight months from the official diagnosis of her recurrence. Your thoughts and prayers for all of her family and friends is greatly appreciated. I will post the details about the services once they are finalized.

They Ought to Name a Room After Her

...Or maybe an entire wing. Stephanie has been re-admitted to the hospital. She started Radiation on Tuesday and Wednesday. Then on Wednesday night we drove to Waco for Thanksgiving and her grandmother's birthday party. The trip seemed to really wipe Stephanie out, she was in a lot of pain, sleeping most of the time, could barely walk, and was pretty confused. After seeing everyone and enjoying the party on Thursday we packed up and headed back to Gonzales so Stephanie could get her next two treatments on Saturday and Sunday. Sunday evening she started getting even more confused and weaker. When we went to the doctor on Monday he immeadiately suggested the hospital because her calcium was so high. Hypercalcemia is relatively common in people with solid tumors in the lungs, and causes most of the problems she was having. On Tuesday, after recieving some anti calcium drugs she was still pretty loopy, so the doctor decided to scan her brain just in case. The scan was thankfully clear, but it was still a scary few days. Today she is mostly lucid as the effects of the calcium are wearing off finally. Hopefully she will be discharged early next week.

Update: One Month Later

It's been a while since I've updated, even longer than the month it's been since Stephanie did. And what a month it has been. After her last update Steph started complaining about the Taxol and significant numbness in her hands and feet (a common side effect of the chemo). The third week of her three week cycle her blood counts were down and she didn't recieve the Taxol, only the Erbitux and later two units of blood. The next week was an off week, towards the end of the week she began complaining about a sharp pain in her left arm and hand. On Monday when she saw the doctor we discussed this and he determined he would like to scan her and see if there was a reason for her pain. She had treatment that day as well since we were in the bulding. At the end of the week we traveled to O'Fallon IL to visit my family, surprise my sister as she was in a play, and celebrate my mom's 56th birthday. Unfortunately there was a reason for the pain that showed up on the scan. The Taxol/Erbitux combination was not being effective and the large tumor in her left lung (the only one that showed any activity a month before) was growing somewhat significantly. It has begun eroding the chest wall and is pressing on nerves in the let shoulder blade area, which is causing the pain in the arm and hand. He switched her to another new drug to see if it would be effective. She felt good in the beginning of the week, but again towards the end the pain became unbearable. When we saw the medical oncologist on Monday and told him about the pain he suggested we consult with the radiation oncologist and determine if the tumor could be radiated to more quickly relieve the pain in the shoulder. The RO decided that he could and Stephanie started her second round of radiation on Tuesday before Thanksgiving. She recieved two treatments before Thanksgiving and then we headed out to Texas for Stephanie's grandmother's 80th birthday. It was good to see her extended family and celebrate such a long life. Stephanie was of course the second center of attention at the party. Unfortunately all the traveling has pretty well done her in. She slept the entire day Thursday, except while we were actually at the party. We had to return to Gonzales on Friday so she could receive her next two radiation treatments today and tomorrow. She has slept all day today as well, she even missed the Razorback game and slept through all my hollering. Hopefully tomorrow she will get some energy back.

We are still planning on moving back to Tulsa. The date is currently set for traveling on December 18th, and staying in our house for Christmas. The MO is researching cancer centers for us and will make a recommendation, probably sending Stephanie to an academic center in order to participate in a clinical trial.

Grace and Peace

Can't A Girl Just Get One Step Ahead?

Can't I just have a normal life for a day? I mean seriously I'd settle or an hour if that would be possible. On the 19th (Monday - when I had my treatment I was feeling pretty good, tired though. So I had my chemo, and got that shot to boost my red blood cell count again - yeh the one that hurts unless they push it in fast enough and not all of them do that. Everything was all hunky - dory. Well, at some point during the afternoon I did something to the mid - left section of my back and as the night went on it got worse and worse. Yesterday I barely got out of bed and it was killing me to even breathe because of the pain. Today was a little better, but not as much mostly kicking me in the - it just . I can drink a few small sips at a time - like 2 - and I haven't even attempted to eat so we are using the feeling tube. I've mainly been sleeping the day away with the drugs. Does anyone have any back /injury fixes?

Okay, so I wrote that over period of a few days and I'm getting a little better I think. I'm drinking more by mouth now and I think that is from the antibiotics because I coughed up some nasty nasty stuff that had been stuck in my throat. We still don't have a date in December for when we are moving back. Things are just always changing out there - so we are still just playing it by ear! Okay, I'm stopping now, before I make even less sense than I have been.

Have You Forgotten About Me Yet?

Long time no post! Well, I guess it's been a week or two, which isn't toooo bad. I finally have some news to post about - see, good things Last week I had the week off from chemo and had my PET/CT scan. It was definitely nice not having to get up early for chemo on Monday. Today we got the scan results and they were definitely positive. The only scans he had readily available to compare them with were the scans from April and I've had several other scans since then during my hospital stays.

So, the scan results:

There were originally two main tumors, one in each lung. The one in the right lung is near the middle of my chest. The tumor in my left lung (where they originally took the biopsy) is near the outside wall of my lung.

According to the scans from last week my tumor in my right lung is not there anymore. The tumor in my left lung is still similar in size (compared to April) but it is responding to the chemo. It's hard to explain. The tumor area is about the same size but the active part of the tumor that is lit up on the PET scan is smaller.

So. My Oncologist thinks it's the Erbitux that is having such a good response so we are continuing with it. I am stopping the Cisplatin and starting Taxol - which means I think I may end up losing my hair again, but I haven't read up enough on Taxol to know for sure.

Well, this is all the updating I'm going to do tonight - I think I've fallen asleep 7 or 8 times while writing this - Warner keeps poking me to wake me up. Goodnight!

Somebody Listen To Me!

Story Time!

So, my parents and brother came up to the apartment yesterday to visit for a little while. Well, I was feeling kind of run down all day so I hadn't eaten really at all so I decided to make some cheese toast because it usually goes down well. Well, rewind to Saturday night - per Warner's request - I made an apple cake from a recipe on The Pioneer Woman (it was actually a really good cake). Well, you cook the apples in a skillet and pop it in the oven once you put on the cake mix. The problem is that there is twenty pounds of butter in the recipe and apparently during the entire cooking time, butter had been dripping over the sides of the skillet on to the oven floor - which I noticed when I took the cake out but there wasn't anything I could do at that time while the oven was still hot. Okay, back to Sunday night and my cheese toast. I forgot all about the butter being in the bottom of the oven so I turned the oven on 400 and popped my toast in there (I'm not one to preheat the oven unless I'm baking bread or a cake or something like that). Well, the whole time it was cooking I was thinking it smelled like something was smoking or whatever - it wasn't too strong though so I ignored it. Well, I went to get my bread out and when I opened the door there was a small fire on the bottom of my oven - to which I exclaimed - "There is a fire in the bottom of my oven." AND NOBODY MOVED OR DID ANYTHING. My dad had been standing right next to me and he just walked away and sat on the couch. Then I said, "Umm...Warner there's a fire..." Nothing...then I slightly yelled "Somebody listen to me! The oven is on fire." And then my dad and Warner responded and dad blew out the fire and my mom and brother stared at me like I was crazy. Apparently I didn't have enough of a reaction to the fire for anyone to think anything of it. Maybe I'll just have to be overly-dramatic next time.

Fatigue At It's Finest

For the past week I have been fighting some extreme fatigue - which can always be quite entertaining since there is no telling what I will say or do - I can' recall any funny stories right now, but I know we've had our share the past few days. On Monday night I was running a high fever (101.8-102.3) so we called MBP because that's what you do at times like that. The on-call doctor wrote me a prescription for some antibiotics - because that is usually the problem, and it was - my tube that is still in my belly was all red a super painful and draining some. So, we got that fixed. On Tuesday I was still feeling pretty blah, just run down and out of it and I threw up once, so I had Warner take me in to MBP for some IV fluids and meds and whatever other magic potions they wanted to throw my way. Well, I didn't get any magic potions, instead I was the proud recipient of two bags of blood. Turns out I was quite anemic. So, I spent my day getting my transfusion. The transfusion did help for a while, I felt really good Tuesday and even on Wednesday. The problem, though, was that I was on the antibiotics and I'm also on blood thinner. Apparently the antibiotics can increase the effects of the blood thinner, and I'm guessing this is why I'm back to feeling run down. I do not have anymore antibiotics to take and I go into the doctor on Monday, so hopefully my body will work on straightening itself back out in the mean time.

Here are a few pictures from the house in Tulsa - we painted the study and the kitchen while we were there over Labor Day.

The kitchen nook area.

The wall on the right needs some art work or something to fill the space. We got the plates above the windows from Hobby Lobby and I'm debating about going and buying the larger one but I'm really not sure what to do....

The study

And again

New artwork above the fireplace. One of our Washington pictures.

My stomach with the tubes still in but my bruises from the Lovanox shots were mostly gone at this point.

Oh well, I'm going to head off to bed here soon! Goodnight!

There's a Hole In My Belly Dear Warner, Dear Warner

So, today I got my drainage tube taken out. You would think this would be no big deal because I had my PEG tube taken out last year and it was a piece of cake. Well, except for the whole confusion in the pre-op area and no one being able to find me, and yeah, no big deal. Well, turns out they put in a different type of tube this time - one with a non-deflatable stopper in it. NON-DEFLATABLE. Last time, my PEG tube had a balloon on the end of it and the radiologist just deflated the balloon and slipped the tube out. Then he butterflied the hole with tape and threw some gauze on there and we called it a day. This time, after waiting in the waiting room for an hour and a half (they were super behind) I went back to the room only to find out that the G tube had the mushroom stopper on the end of it and that was going to be pulled through the hole in my belly - I wanted to start crying right at that moment, but I didn't. Then he pulled the tube out and let's just say I screamed some and then my eyes got quite watery. Warner's hand is probably broken in about 20 different places as well. So, he pulled the tube out in two yanks, yeah, not one, but two, and stomach content went everywhere. I soaked through tons of gauze in about two seconds. My tshirt and jeans did a good job of soaking up the stomach stuff as well. I'm still leaking a good bit tonight so I've got a stack of towels and gauze nearby and Dr. Warner is doing a great job by keeping me doped up on some pain meds for now.

My stomach can close up by tomorrow (like it did last time) but there's always a chance that it may take a few days and I'm definitely going to be more sore this time than I was last time, just because of how they pulled the tube. And you know what the worst part is??? I still have my feeding tube in the right side of my stomach so I have to go through all this again eventually. I think I might be waiting a little while though.

Not Much Is Going On Around Here

I am usually one of the first people in the chemo room on treatment days. We always scheduled treatments for as early as we could because it used to take all day and we just kept it that way. For the first couple of hours Warner and I both get to sit in recliners because the room takes a while to fill up, but eventually Warner has to move to a roll-y chair that the nurses move around and also use so he occasionally gets bumped from his chair temporarily. No big deal really. Well, there is one nurse who is kind of loud and she embarrassed the heck out of Warner yesterday by yelling to him from across the completely full room (she needed his chair),

Nurse: Mr. Bradley, I need your chair

Warner: Okay

Nurse: Sorry I would have called you by your first name, you're too young to be Mr. Bradley. What's your first name?

Warner: It's Warner

Nurse: Warren?

Warner: no, Warner

Nurse: Okay, Warner I need your chair.

EVERYONE was staring at him and he turned slightly red. Way to not draw attention to us! So now everyone knows who we are, although we already stand out in there because we are so young. I thought we had always done a good job of flying under the radar, but the first week I walked into chemo after Washington, I was amazed at all the people who commented and mentioned they had been praying for me and such.

So, in other news I have switched from daily Lovanox shots to taking Coumadin and my stomach is thankful. I'll have to post a picture of my stomach - it was dark dark purple and probably the worst bruise I have ever seen. I'm also getting my stomach tube out sometime soon - I'm waiting to hear when the appointment will be. I'll still have the feeding tube but that one is bearable - it's the drainage tube that gives me problems and I'm not using it any more so it just hurts all the time - so it is time for it to go. Well, that's all I've got for now.

Growing Back Muscles Is Hard Work

I have been a terrible blogger lately but the truth is, apart from telling you that everything is going great, I've got nothing to say! Or at least, I don't find most of it interesting, maybe you all would disagree, so here you go.

We have finally gotten a step ahead of all the nausea and dehydration (this past week at chemo I didn't even need extra fluids) and I have had really good weeks since getting back from Washington, granted, any week that I don't go to the hospital is a good week! I have gained a significant amount of weight in the past two weeks - I'm up from 115 to around 130, but I'm still wearing a size 4 or 6 in pants which means I have been shopping a few times! My plan is to get my weight around 140 and keep it there, so we will see how that goes. I have stopped using the stomach drainage tube (I still have it, it's just closed) and I guess as long as things keep going well with that I'll get it out eventually. I still use the feeding pump. but it now just runs through the night and in the morning, which means I get to unhook from it all afternoon. Since I started gaining weight so quickly after Washington, because I am eating more by mouth, we do less food by the feeding tube. We couldn't do this before when I had the drain tube open because everything I would eat and drink would just come out through there and basically I relied completely on the feeding pump. The IV pole can also be a pain to push around so it's really nice to have some freedom from it for a little while each day once my pump is done - it's much easier to go shopping without it.

So I have been eating about three meals a day by mouth - I still can't eat a whole lot at a time, but I do snack a lot in between meals. Hopefully I'll be completely independent of all my tubes here soon and they can come out! I've been cooking a good bit as well - something I've missed doing! I even bought a cute little apron from World Market the other day. I also bought a ton of new cake decorating supplies from Hobby Lobby yesterday and I can't wait to try them all out!

I always joke with Warner that growing back all my muscles is really hard work. Because I'm feeling so well, I'm usually super exhausted by the end of the day and since my muscles didn't get used for so long, they have been super sore lately! Especially my legs!! But I'm slowly getting more endurance and getting around better. Well, that's all the updating I have for now - I think I've rambled on long enough. I'll try to keep up with this thing more often now!

Oh! If you need Haley's address sent to you so you can send her your bracelet money, email me - sobradley@gmail.com , or leave your email address in the comment section so I know where to email it to.

Just A Quick Note

My awesome friend Haley has mailed out the bracelets that she has finished so be watching your mailboxes. If you have not sent her the money for them, they are ten dollars each and I can get you her mailing address or you can send me the money and I will get it to her. I will post an update about us at some point in the near future - maybe even with pictures!! I know you guys miss me terribly, right?

A Much Needed Break!

Here are a few pictures from where we've been lately! Now you'll understand why we've been MIA from the blog. I'll post more pictures and stories later on. Enjoy these for now.

The view on top of Hurricane Ridge in Olympic National Park - it was awesome!

On top of Hurricane Ridge

The Hoh Rainforest - they were experiencing a drought while we were there!

This is "sunset" at Rialto Beach - it was quite foggy!

Rialto Beach

Dungeness Spit! It was pretty neat out there.

This is at the Lavender Farms - definitely one of our favorite parts of the trip.

There were so many flowers out there and the lavender smelled soooo good!

There were fields and fields of lavender!

This is at the Dockside Grill at the John Wayne Marina where we ate for our anniversary dinner. The food was okay but it lacked the cajun spices!

The made a really good seafood bisque though.

Crescent Lake - the water was absolutely gorgeous!

Crescent Lake

Crescent Lake

The sunset over Hurricane Ridge.

The view from Hurricane Ridge

The sun set at like 9:00 so it was a late night for us.

The Seattle skyline from the space needle where we ate lunch before our flight on Saturday

Yep we ate lunch at the top of that thing! It spins around while you eat so you get to see the entire view of the city.

The moon over Seattle

Sunset over Seattle - we were surprised by how nice of a city Seattle is.

A Bug In My Arm

Last week it took them nine IV sticks to get a vein that would work for my chemo. And the vein they got was really tiny so they had to pump everything slowly. This week, they stopped sticking me after 3 tries. So I caved in and finally agreed to get a port in my arm I had already tried to have a PICC line placed but that didn't work and I've had two central lines on separate occasions while in the hospital but both times they had to come out before I left because of the risk of infection since they were only temporary. So, apparently it's about the size of a quarter and it right under my skin in the inside of my upper left arm. They didn't put my under for it, just gave me Versed and Fentanyl, but they couldn't give me very much because my blood pressure was ridiculously low, like 80s/50s. After I got the port I went and got my chemo. It was much quicker, that's for sure - no more searching for veins or burning veins from some meds.

So, today is the day after chemo and I'm feeling good as usual. Tomorrow is usually when the fun kicks in. I'm just staying on top of my meds and all that for now and really hoping for a good week!

We leave for WASHINGTON STATE on MONDAY! Yay vacation. I'm really really excited! I'll write more later!

I'm Huggable Again!

Just a quick update that we are home (we have been for a few days now) and readjusting to non-hospital living. The boys are here with us and Edgar is so happy to see Warner. He goes nuts when Warner gets home from work and Warner just has to look at him and his tail wags. Any time that Warner says "Good Boy" to either dog, Edgar's tail wags uncontrollably. When I say it, I get nothing. This all goes back to when Edgar was a puppy and Ruekie made sure to let him know that I was his and Edgar had to stay away - so he clung to Warner.

So, I no longer have C-Diff, although I'm still dealing with some lingering symptoms, and my white blood cell count is getting higher - it wasn't 100% when I left the hospital but it was definitely higher than it was.

We've had a few visitors the past two days. Dawn brought the kiddos by yesterday for a few hours and we just hung out on my bed and the floor. The dogs definitely enjoyed all the attention from Micah hugging and petting them and Molly and Mason throwing toys for them. Anne and Andy and their two kiddos came by today for a little bit to say hi and to bring us some awesome gifts that I would show you on here but you'd be jealous and we don't want that. Seriously though, they are pretty awesome.

Anne asked me how much I weigh right now and I didn't know at the time so I decided to hop on the scale to see if I gained or lost in the hospital and I'm up to a whopping 125. Yeah, I'm getting there...slowly.

Chemo on Monday!

Can't Touch This

I am still hanging out in the hospital - getting pumped full of tons of stuff, potassium, antibiotics, iron, and I got blood over the past weekend among other things. I came in for dehydration and ended up with a million this wrong with me. While here, My stomach tubes started hurting really bad and draining really bad around around them so I have them mega-bandaged. On top of that I developed severe diarrhea, and I mean severe. And on top of ALL of that my white blood cell count bottomed out. So, they began running a million tests and running scans. They thought there might be an abscess in my stomach but a CT scan ruled that out and just showed some colitis and inflammation, which was possibly causing some of the tube pain. Then they found out I have Cdiff so I was put in contact isolation - no one can touch me without wearing gloves because I am super contagious. I think I freaked Warner out last night because when he came in I was asleep and he didn't know about the cdiff yet, so he tried to kiss me, and I woke up real fast and yelled " Don't Touch Me!" He jumped back and gave me a crazy look so I had to explain it all to him. I'm on antibiotics for everything as well, so hopefully I'll be better soon.

So, I have colitis, inflammation, CDiff, and I'm neutropenic...WOOHOO!

And We're Back...

I'm not sure which is worse, being back in the hospital, or getting really good care because we know all the nurses. Stephanie hasn't been feeling as good as she had previously the past couple of days, so her mom called me today after she had thrown up a couple of times. I called the doctor's office and was eventually told to bring her on in. Stephanie's doctor is out of town, but his partner that is on-call determined (rather quickly) that Stephanie was not only dehydrated, but dehydrated enough to put her in the hospital...again. So here we are, Stephanie is getting IV fluids and watching "What Not To Wear" and I'm not doing much at all.

Grace and Peace.

The Latest

I finally weigh 120 pounds and I've also eaten two pieces of toast and a few bites of scrambled eggs (yesterday and today). There's my update for today.

Much of the Same

I'm still alive. I just haven't been up for posting much lately and honestly, not much is going on to post about. I had a series of doctors appointments this week that turned into marathon appointments by the end of them. My appointment with Heels was about 3 hours behind schedule or at least, that's how long it took and about 2 hours and 50 minutes of it was waiting. Usually we try to get the first appointment in the morning because we know that she backs up, but we scheduled this appointment a week in advance so we took what we got. I had my chemo appointments on Thursday and I ended up needed potassium for my blood so what was supposed to be 3 hours turned into 9. Yes, NINE. They have to infuse the potassium slow because of my small veins and potassium is really bad about tearing up veins and it burns as well. So my bag of potassium took about 5 hours to go in. Yeah, I needed a good bit of potassium I guess.

I have next week off from chemo which will be nice, but I do like getting the fluids when I go - they seem to perk me up some. The trips to and from the doctors offices seem to wear me out the most - so I won't be missing that at all. When I go for chemo I get to lay in a bed during treatment because I get benadryl with the Erbitux so it knocks me out and I sleep for a good bit during treatment. I enjoy the special treatment.

I'm still weak but I think I'm getting stronger, at least a little bit. My legs are super skinny and Warner calls them my matchstick legs. I gotta get some meat back on them things! I think I am gaining weight, at least I know I'm not losing it. I can tell I've got a little more fat on my stomach right now and my face is filling out more and more.

We don't have any big plans this weekend. My dad is coming up tomorrow to hang out and Paula mentioned maybe coming up? I just plan on lounging around as usual since I'm in my after days from chemo. Hopefully I'll be okay tomorrow and not too bad on Sunday which is usually one of the worst days as far as nausea goes. I did get an anti-nausea patch for my arm because I've been having a good bit of nausea when I should be feeling good during the week - mostly in the early mornings / almost the middle of the night. So, hopefully the patch will help some with that.

For now I'm going to stop rambling, take a Phenergan and head to bed. Have a good night!

One Week

Well, I officially ignored the blog for a week and I still have nothing to say. I have been really tired since being home and pretty much spend a lot of my time sleeping. Mom has been at the house hanging out this past week and she went home tonight for a break and she'll be back on Monday morning to fall back into the routine of giving me meds and such - what a fun life! My dad gets to come by about twice a week as does my brother, to visit, so I get to see them a good bit as well. We got the dogs back today - we had my dad keeping them a little longer until we got adjusted to being back home. So, Charlie brought them up tonight - Warner was really happy to see them, as was I - I just can't get on the floor with them or anything so it isn't as fun! That's it for news around here right now. Everything is still the same as far as I know - but that really isn't much these days! Oh yeah, Hal says to let you all know that she is working on the bracelets and waiting for materials to come in. So, I'll keep you posted on those as I find out more! Oh well, I'm off to bed. Hope you all are having a good weekend and I'll try and update more often on here.

Sprite and Gingerale

quick update I finally got home last night. i spent something like 15 days total in the hospital with my surgery for my SMA. I have a tube in my intestines, one draining my stomach, and staples up the middle - from the surgery. Hopefully I'll toughen up and get better soon. I'm still hurting a good bit from all the incisions and my home pain med isn't working like it does through an IV at the hospital! So, there's a long needed update I guess. Not too many details though. Anyone want to drop off any pain med gifts (via IV or shot)? I'm also really weak so not much phone talking for me - you won't be able to understand me!

More later - I've had two sprites and two gingerales today....

End of Week Two

Stephanie has been in the hospital for 13 days this time. Right now there isn't a discharge date in sight, but the doctors are monitoring her daily. She is technically due for chemo again on Friday, we haven't heard whether or not it will be delayed again. So out of the past 42 days Stephanie has spent 24 in the hospital. Hopefully next time wil be much better.

Grace and Peace.

Another Surgery Down

Stephanie had surgery today to correct the SMA Syndrome she's been suffering from the past month. Originally we hoped it could be corrected laproscopically, unfortunately that wasn't the case. The doctor made a small incision and basically removed the contents of her abdomen and put them back in lower to remove the small intestine from the area where the areteries were pinching together.
Everything went well and Stephanie is now recovering. Unfortunately she can't swallow anything, which is really tough for someone as addicted to ice as she has become. She also has a PCA pump again, which is a pretty good thing for her.
In less important news we got moved yesterday to a larger room with a stretcher for me to sleep on. Not quite as nice as the original room she was in a few weeks ago, which was pretty much a suite, but still much nicer than the pull out couch to sleep on.

Shining A Little Light on The Subject Matter Of My Rare Diseases

Well, It seems like I've kept everyone in the dark as to what has been going on! I'll try to keep a coherent thought going on here, but just know you are forewarned. I had chemo on Friday and it was really no big deal. My doctor ordered a ton more fluids to try and stay ahead of all the problems I was having the first time around. It seemed to work like a charm. I woke up and ate some yogurt and milk and then had some broccoli and potato pureed soup. It had become a staple. Well, I did pretty well. I ended up staying in bed all day on Sunday quite nauseous and sleeping and popping pills as I could. I was up for most of the night Sunday night with my bucket, unable to keep anything down, including water. 

So, Monday morning we called to go in to the oncology unit for fluids (my bloodwork showed I was barely dehydrated so it wasn't that!) So, I got some zofran, ativan, decadron, and fluids. After all that I still wasn't feeling well, so they went ahead and admitted me. I again had my stomach pumped (it's still being pumped as I write this). I guess it was later Monday that I had a bunch more tests run and I was woken up on Tuesday with the results??? Or maybe they did all the testing on Tuesday? Or Monday afternoon at some point saying they needed to run more tests to confirm if it really is my SMA again, because usually when they're certain they're right they're usually wrong, but they are definitely right this time. I apparently have this huge blockage on my small intestines.  So, long story short for the night, I haven't been able to eat anything my mouth since Monday except liquids because they get pumped right back out...which means yes, I have a NG tube in my nose to my stomach.

On Monday I will be having surgery to correct the problem by moving my small intestines out of the way and by putting a feeding tube in my stomach and my small intestines to make me gain weight faster. 

But regardless, I'll finish the story tomorrow, it's bed time now!!! 

Sitting in the chemo room hanging out watching the storm and

 playing on the computer and thinking about taking a nap.

Warner thinks he's a patient today. He's taking advantage of the 

 snacks that I can't eat yet and the empty recliners for once.

For the first time ever there's a younger girl in the chemo room but she's at the other end of the room and sleeping. It's been a pretty uneventful day so far which is definitely a good thing! I'll post a better picture of the bump above my eye later on. It's not too bad but it definitely hurts. I took a Vicodin last night when it happened because it made my neck hurt pretty bad and I woke up in the middle of the night when the pill had worn off and I fully felt the effects of hitting the cement full force with my whole body! Oh well, enjoy the pictures for now!

Stunt Woman Training

(me before work this morning)

Chemo Tomorrow.

I need to get about 4-5 hours of entertainment together tonight so I can have something to do while I sit there. Basically I just have to remember my computer! 

In other news, I started my training as a stuntwoman today. Ha. I completely face planted it today on the cement. I had the boys outside going to the bathroom in the garden off the leash. Ruekie wouldn't stop whining and I didn't know when Warner would be home since he was running errands, so I took them out. Well, a big ol guy comes walking by with his little bitty yippie chihuahua and the boys of course wanted to go make a friend - Big Guy was not a fan. So, I started to run after the boys and my leg gave out since I am so weak and I apparently can't run. Well, down I went face first in to the ground. Luckily there were some guys across the way yelling at the boys and asking if I was okay, so it all worked out. So apart from a headache and some bumps and bruises and one really good bump on my eyebrow everything is fine. The boys are in mega trouble though and have been kenneled since the incident. 

The bump above my right eye (the computer flips the images)

Not much else is going on really. I worked half days all week which allowed me to get back in to the swing of things and get a few things done and to meet the million new people that are running around the offices now. Food is going about the same with a little improvement in the past two days. Yesterday I told Warner I wanted peas and mashed potatoes but he didn't get the message until he got home, so he went back out to get me KFC mashed potatoes and then to the grocery store to get me peas (but he bought the wrong kind, he got frozen and I like my peas to be canned - he was just trying to be healthier, but I'm not sure what's healthy about neon frozen peas). So that was my first adventurous meal. Then tonight Warner and I had pancakes for dinner so I'm hoping they stay down! I've been eating some applesauce and tapioca pudding as well. So hopefully that pizza is coming soon! HA! 

I saw Heels yesterday and Dr. Bienvenu had filled her in on my SMA which was a good thing because I really expecting a lecture for losing 20 pounds. So, it was a good visit. She checked my mouth and all that and we talked for a while. Mell was in there because she had just found out about my cancer returning, so she was fussing at me for not telling her. They both agreed that I looked gorgeous bald and with a scarf on. Heels fussed at me for not telling her I was in the hospital. I thought for sure Dr. Bienvenu would tell her, but apparently not. I told her I next time I would definitely tell her, but hopefully there wouldn't be a next time! 

I'm still keeping you all in the dark about my big surprise! I'll tell you all soon. I promise.

Working Woman

I went back to work yesterday. It was really good to get out of the house but man by the time 2:00 rolled around, I was pooped and declared it quitting time. Today I decided to quit at lunch which was a much better situation all around. Monday I got a snowball on my way home, ate some of it and then crashed for the rest of the afternoon. Today I just slept for a little while sitting on the couch. Not much else is going on right now. I'll have to write a post about the surprise Warner gave me last night, but for now I'm going to leave you all guessing as to what it is. My new food is tapioca pudding - it has pieces in it. So I'm pretty excited about that because I really like tapioca pudding. Oh well, just wanted to let you all know we are still around!!! 

Bracelets

Due to the overwhelming support for the bracelets we are going to set a deadline for tomorrow for orders so Hal can order supplies and get them made. So if you want one, or know someone who might, get that in to me by tomorrow! When I get a final count, I will send out an email to everyone who has ordered one with my address for sending the money and all that jazz.

In other news I had my doctors appointment today and everything is looking good. He decided to wait a week for chemo so I have some more time to gain weight. I think I am going to try and go back to work on Monday, at least for a half day - I get pretty bored during the day. 

Soup Soup Soup

Just letting you all know I'm still alive - bird legs and all. Not much exciting is going on. Just eating soup and watching reruns of Unsolved Mysteries. And so you know how awesome my husband is, he gave up his lunch break today to go to Walmart and buy me soup (we were mostly out) and pudding. AND he bought me flowers AND he came cooked me the soup when he got home before he went back to work. He also shaved my head last night for me. That's pretty awesome. But don't worry, I let him buy a new video game the other night, so he's at least getting spoiled a little bit! My mom is bringing me some soups on Saturday that she has cooked, so I'm looking forward to having something different. 

We will find out tomorrow at my doctors appointment if I will have chemo tomorrow or not. I guess it depends on how my doctor thinks I'm doing! 

Support / Awareness Bracelets

My friend Hal approached me the other day with the idea of making a bracelet for me, like the one pictured above. It will be on a red rope because red and white are the colors for Oral Cancer Awareness. The beads are silver and the center bead will have an "S" on it for Stephanie. To cover the cost of supplies for the bracelet, each bracelet will cost 5-10 dollars. If you would like one of these bracelets or if you have any questions about them, let me know by either leaving a comment or emailing me at sobradley@gmail.com. If you leave a comment please make sure you leave your name and email address so I know who to contact and how to contact you. 

Whole Foods

Two nights ago Warner and I ventured out for a very quick trip to Whole Foods. I get tired really fast right now so we tried to make the trip as fast as we could. I would sit down when I could and stayed focused on what I was looking for when I was walking. I wore my mango scarf in the store because I knew it would be freezing cold in there - otherwise I probably would have just gone bald because I'm lazy. While we were walking and I was contemplating taking a sitting break, a lady asked me how I was feeling, while tugging on her wig. Apparently she was fighting cancer as well. She pointed out some foods that she likes to eat, we thanked her for the ideas but we informed her of my  stomach issues, to which she thought I meant chemo nausea. We tried to explain it to her but she didn't really understand so we let it go. Anyway, it was a nice conversation for a few minutes and then it just got weird. We cut the conversation short becuase I really did need to go sit down by this point. She hugged me (and if you know me, I'm not a huggy person at all) and then she told me she loved me. It was all a little too personal and touchy for me, I much prefer the weird looks from non-cancer people, but hopefully it made her day.

Okay, and now for some pictures for Dawn to reward her for reading the blog!!!!

This is my mango scarf - it's a little big on my head, but it's probably my favorite right now. It's slightly heavier weight but it's made of stretchy material so I like it. 

This is my flashy scarf. I didn't realize how glittery it was when I bought it but I'll wear it for fancy occasions! This one is the same material as the mango scarf.

This is my lightest weight scarf and it has butterflies on it. It will be good to wear when I'm outside when it's hot since it's so lightweight.

I have picked out a couple more scarves that I am going to get I just have to get around to ordering them. Other than that, not much is going on around here. I'm just eating and trying to get fat...or at least gain some weight. I bought some soup at Whole Foods and my mom made me some soups - but they are all quaranteened right now so I guess it may be a couple days until I get the soup. A guy at my brothers work got the flu Monday and apparently my mom hasn't been feeling too good this week. 

Basically right now I eat something every few hours - usually yogurt, soup, or milk, or whatever I can find. I don't have many snack ideas, so if anyone has any good ideas, please pass them along! I don't really like ice cream that much and I am way beyond tired of jello! I also prefer juice to smoothies (I'm not too crazy about frozen things I guess - I just put lots of ice in my drinks). Well, that's all I've got for now...enjoy the pictures!

Brownie Batter

So, I had the revelation tonight that I can eat batter! I obviously haven't tried this theory out yet and it may not settle well in my stomach - but batter is kind of liquid, right? Cake batter, brownie batter, etc.... I think it's a genious idea. Okay maybe not. Maybe I'll just lick the bowl if someone makes brownies or a cake or something - I'm not going to sit down and eat the entire box of mix.

In other news, I am tubeless now! My NJ tube got clogged this morning and we spent the entire morning trying to unclog it. When we finally talked to the doctor, she told me to go ahead and pull it out since it was no longer usable. Yeah, for ME to PULL it OUT of my nose. On my own. So I did. It was either do it on my own, let Warner do it, or wait until tomorrow and go to the hospital to have it taken out - so Warner convinced me to go ahead and take it out on my own at home. And man did it hurt when it got to the end because the end part is slightly larger than the rest of the tube. They had trouble finding a tube that was small enough for my nose when they put the tube in so it was really tight, which obviously made it painful when I took the tube out. But the good news is that the tube is out and no longer irritating my throat and nose. Now I have to work extra hard to gain weight so I don't have to have the tube put back in. 

I'll have to take a better picture of myself "tubeless" but for now you'll have to deal with the one above - I snapped it really quickly with the computer so I could show off my lack of tubes!

Paula came by and visited me today, as did my parents, and Warner's mom was also here this weekend. So we had quite a few people hanging around today! I'll have to write more about all that later. It's time for bed now! 

Weight Changes

Here are a couple of pictures over the past two weeks so you can see the changes I've gone through with being sick and everything. I didn't realize how much weight I lost until I started looking at pictures. I had asked Warner to buy me a pair of comfy pants from Gap while I was in the hospital and I remember fussing at him because he bought me a medium "for the length" (as if a medium would be too big in the waist) and I thought there would be no way they would fit my waist (I usually wear a large) but he was right and the medium fit me quite well. And for those of you who thought I had no butt before all of this?!?! You should see me now! Haha.  

This was taken April 16th, my first day back in the chemo chair. 

This was taken April 27th after I had been in the hospital for a while. You can see how much weight I've lost! And this was even when I was on the better side of being sick! 

Me today!! My brother completely shaved my head last night since all the little pieces were falling out! I can't wait to get rid of the feeding tube so I can take a decent picture! But I definitely look a whole lot healthier in this picture than I do in the previous one - I'm still pretty skinny though! And in spite of my head always being cold, the no hair thing is pretty convenient! 

Maybe Someday I'll Be Normal

In case you were wondering why I've been in the hospital, I'm pretty sure this is the technical term for it all :

Superior Mesenteric Artery Syndrome

And according to everything I've read online about it, it's pretty rare! I like to keep the doctors' on their toes! 

Freedom

I'm breaking out today...feeding tube and all. The feeding tube should be gone in two weeks and hopefully I'll be well on my way to eating pizza by then! I do still have some questions for my doctor before I leave, so I won't be outta here until around lunch time! And I have to get some food ideas as to what exactly counts at liquids so I know what I can eat when I get home. 

Hey Look!

New Fuzzy Socks!!!

They're fuzzy like my head! Not much news to report. I'm allowed to drink chocolate milk now and today I think I get to try a different type of soup - which is awesome because you can only eat chicken, beef, and vegetable broth, for so many meals and if anyone wants "jello" let me know. They bring you like 3 containers of it at a time and it's not even real jello because there's not any gelatin in it! Plus I just don't eat jello that much  and usually it's a little warm when they bring it to you. If I'm going to eat jello it better be super cold. Anyway, that's my news today. Hopefully I'll get out of here today and I gotta keep trying to gain weight. This morning I weighed 131. It's a learning process for me trying to figure out how to gain weight healthily - usually I can just eat cake and cookies and call it a day! But since I can't eat any of that stuff, I'm starting from scratch! 

Oh yeah, my stubblies on my head are starting to fall out so I'm going to have Charlie shave it all completely off when I get outta here! And I am sooooo ready to go swimming soon!!!!