Home at Last!

I’m back home in Quantico with my hubby & kids. I cannot eat & am only supposed to drink water/ice chips, but hey, at least I’ll get to sleep in my own house & bed…that’s got to be better than the hospital. I’ll be going back for another GI study in a couple of weeks to see if things have healed & I can start drinking more & then advance to eating. Please continue to pray for the transition…I get horrible cramps in my stomach as it’s trying to do its job & work, work, work. Also, please pray for the transition to being back at home with all under the same roof.

Thanks for your continued prayers.

Love,
Steph<><

Christmas Eve at the Hospital

I'm still in the hospital. I am not allowed to eat or drink anything. I received a PICC line today & should be ready to go home on TPN by Thursday or Friday. Matt's going to get the kids & bring them up here to open presents & see me. I am hanging in there.

God is so good...the Starks & the Rices set up a Christmas tree in our house & baked Christmas cookies to give us something to come home to. Our neighbors the Draas put lights up on the outside of our house. The Ruperts are sending the kids here with a 2ft tall tree to decorate before opening presents.

This has been an interesting ride, & I'm not sure when it's going to end, but I do know that all things work together for the good of those who love God & who are called according to His purpose. I am trusting His will for me & my family.

Thanks for your continued prayers.

Merry CHRISTmas!!

Love,
Stephanie<><

Trying Food (Again)

Dr Cameron put me on food for today & tomorrow. Matt went & got me some different types of soups (chicken & rice, vegetable beef, etc). Lunch was delicious, & now, we're just waiting to see what happens. If all goes well, I'll be discharged early Monday morning to the hotel. I'll have to return either Wednesday or Thursday to see Dr Cameron, & then I should be sent home to Quantico.

Please, please, please pray that the food continues to go through my GI system the proper way.

To God be the glory!!!
Stephanie<><

Thursday 12/20

Hey...

I got an NG tube last night, an xray series today, positive results & the NG tube removed.

DR Cameron doesn't understand why I'm having trouble eating b/c the contrast emptied out of my stomach quite quickly. I think we're going to be content with just drinking stuff for awhile. I think they're also going to supplement me with TPN (I weigh about 100 lbs right now).

Kids are doing fine with the Ruperts (PRAISE THE LORD!!).

Please pray for good digestion days so we can get out of this place ASAP!!

Love,
Steph<><

Update for Tuesday 12/18

I just wanted to post a quick update to let y'all know that the docs thought it was a good idea to try me on some food today. I had a couple of bites of scrambled eggs & cream of wheat & about 6 TBSPS of apple juice. For lunch I had a few bites of mashed potatoes. It does not feel like my stomach is emptying at all...previous symptoms are starting all over again.

Obviously, there is a pain/discomfort factor, but the main thing I'm dealing with right now is frustration & despair. I'm beginning to feel like this is never going to end. None of this is in my control. Please pray for things to start working, for wisdom & guidance for the docs & then for me to see the light of Christ shining through the entire situation.

Matt is still with me at the hospital, but at some point, he'll have to get back to school. The kids have been staying with the Nagy family but will be going over to the Ruperts (one of our pastors) b/c the Nagys are going out-of-town for Christmas. Please pray for this transition to go smoothly.

Thank you so much.

Love,
Stephanie<><

12/15 Update

Hello all,

I just wanted to send out a quick update. I am back at Johns Hopkins and after a couple of very "hairy" days, I am doing fine.

Dr. Cameron expects me to return to sips of water and chips of ice tomorrow (Sunday) with liquids on Monday and real food on Tuesday. If all goes well, I should be discharged on Wednesday (Matt is certainly praying for this as he wants is to be back home with the entire family!!!).

The delayed gastric emptying caused my stomach to become very distended (over 1 foot in length). Yesterday, I experienced constant waves of cramps as my stomach started trying to return to normal--labor pains felt better than the pains I was experiencing and there was nothing I could take for it (except revert back to lamaze).

The kids have been transferred back at the Nagy family & are having lots of fun. Matt plans on going home and spending time with them today and tomorrow.

If you want to call and chat, my number is (410) 502-0285.

Thanks for your continued prayers.

Love,
Steph

Going Back to the Hospital

I just wanted to let you know that I am going back to the hospital. They think I have delayed gastric emptying (gastro pyresis)...happens about 25% of the time. I'm told that it's easily fixable. They're going to wait & see what the CT scan shows in case there's something else going on.

Matt's on his way to meet our pastor's wife (Sue Rupert) 1/2 way to take the kids back to VA then we're going to head over to Hopkins. I think the Ruperts are going to keep the kids for us (they've raised like 8 kids so my 2 should be a piece of cake...maybe I'll even end up with individual pointers based on their personalities ). Sue didn't even skip a beat when I called before 8am & asked if she could find someone to help get the kids back to VA. Her response was basically, "I'm on my way." (See, Mom, you don't have to worry about me or the grandkids! The LORD provides!!!!) We are very, very blessed to be right where we are...divine providence for sure!

Again, please pray for an accurate diagnosis by the docs & patience, peace & comfort on my part & for poor Matt who just wants his family to be together at home.

Love,
Steph<><

Still in Baltimore

Hello, All...

I had my appointment at 7:15 this morning (UGH! including taking 2 kids w/ us). Dr Cameron was concerned about some pain that I'm still experiencing...pain meds isn't even touching it (I was up all night...literally). It's hard to describe, but it's like I'm painfully aware of the upper portion of my small intestines from left to right...it HURTS!!! So, he sent me for labwork & a CAT scan.

The probelm is that insurance requires preauthorization. My case manager was working with the hospital to jump through all the loopholes; however, I was tired, impatient, in PAIN & waiting with 2 very tired & bored kids (they actually did a GREAT job, but they're 6 & 8 & act like it at times!). I called & talked to one of the pastors at our church (Lars) who promised to pray for the situation. In the meantime, I was thinking it might not happen until the afternoon & I really, really needed to lay down so we left. As we were driving down the parking garage, the phone rang & the hospital said the referal was in place...sooooo, we parked (again) & came back. We waited FOREVER, & my pain was increasing. I finally had Matt take the kids for a walk. In the meantime, my name got called for processing. The guy was way to pokey, & I'd been on my feet way too long (no vertical time since 5am, & it was around noon). I felt as if I was fading fast so I asked for a wheelchair (can you believe that I actually did that???) & was told I could go get one downstairs. I politely told the guy that I wasn't even 2 weeks post-op from MAJOR surgery with an incision that was at least 1 foot long & there was no way I was going to walk downstairs to the entrance for a wheelchair. In the meantime, Matt & the kids returned & got me one just (in time).

When the x-ray tech got my paperwork, she noticed that I'd documented that I was allergic to CT scan IVP contrast & that I hadn't done my allergy prep-work. (How could I? I didn't know about it yesterday?) When I had a CT scan at Potomac Hospital's ER, they put something in my IV right before injecting the dye...well, this radiology dept doesn't do that. I literally sat there & cried in front of them. I was tired, in pain, had waited around longer than I had to, & had NOTHING to show for it. They gave me a script for the steriods I need to take so we can return tomorrow around 1pm (24hrs after I took the 1st dose).

Part of Dr Cameron thinks that it's nothing; however, he's not blowing it off so that means it might be something.

Please pray for the pain to be under control, for an accurate diagnosis & treatment, for me to get A LOT of sleep tonight, & finally & most importantly for me to keep my focus where it belongs...on Christ & not on my temporal circumstances. Pray also for me to have patience & grace with my family regardless of how I'm feeling.

Thank you in advance for your prayers. Please do not worry or feel guilty for not responding. I know you love me & care for me & will pray for me. I truly appreciate it.

Love in Christ,
Stephanie<><

At the Hotel

Hi...Just wanted to let you know that I'm at the hotel...I was sprung this afternoon. I go back to see the doc on Tuesday & then hopefully home. Thank you for your continued prayers...good & bad moments can swing like a pendulum; HOWEVER, I know Whom I serve & I know HIS power & HIS love for ME so no matter what happens, I am right in the middle of His hand. (sometimes, however, I feel like I got in a wreck with a freight train & lost!!)

I pray that you & your family are doing well & look forward to the reunion with my kids tomorrow (although I do not look forward to Matt's ride to & from Q/Stafford to get them...please keep his safety on the road & mine alone in the hotel in your prayers.

Because He lives...
Steph<><

Update from Steph

Hello, All...

I just wanted to send out a quick email to let you know how I'm progressing. I'm finally able to sleep for extended periods of time although my concept of time is still way off...20 minutes vs 8hrs...it's all the same to me.

I've been up & around & walking since the night of surgery (Friday night) & am feeling a lot less foggy & a lot more clear-headed. My pancreatic enzymes are continuing to come down, & I haven't asked for Benadryl for the itching in about 3 dose periods. We'll see what my levels are at when the "team" comes to check on me this morning. I would really, really, really like to eat "real" food but would be just as happy to eat some pudding or mashed potatoes!!

My mouth is quite dry...I am beginning to think that a desert has more moisture in it than my mouth! (I also really do not like typing on Matt's laptop!)

This hospital is just amazing, & it's quite a privilege to be recovering in the Marburg Pavillion...They have fresh coffee, juice, tea, etc for family members. Yesterday, the guest coordinator was making fresh fruit smoothies. There's also finger sandwiches & fresh cookies (Maybe now that I'm not requiring as much attention my poor overworked & underthanked hubby can enjoy it.) The bathroom in my hospital suite is stocked with L'Occitane products. The bottled water distributed to family members is Evian & Perrier. This part of the experience is more like a hotel instead of a hospital...another blessing from God b/c of my doctor. He's done so much to improve the Whipple procedure (aka pancreatic duodenectomy) that he just tells the hospital what he wants for his patients, & they get it. I can't remember what the exact mortality rate is for the procedure (somewhere around 50%), but his personal rate is 1%, & he has helped the state of MD to lower theirs to 12%. Anyone in the medical field in this area knows who Dr Cameron is & has nothing but nice things to say about him.

I haven't had an NG (naso-gastro) tube this whole time b/c they couldn't get it down my nose in the OR...kind of strange since I've had them before; however, I am praising God for being spared from this experience.

Well, I'm going back to sleep...I enjoyed my stroll around the floor with Matt but should probably get more rest to heal & recover. The kids have enjoyed their time with their Gram (Matt's mom), but she'll be leaving in the morning to go back home...pray for the kids as they get adjusted to staying with the Nagy family (& vice-versa). Hopefully, my next email will included news about actually eating something real & not just ice chips.

Thank you for your continued prayers & emails of encouragement & support.

Love,
Steph

Surgery Update from Matt #2

Hi again,

Just a quick update that we are in a room now. It is Room #346 in the Marburg Pavilion. The phone number is 410-614-4812. The room is ridiculous, but I shouldn't be surprised since Dr. Cameron is Steph's doc. Let's just say the room is first class and then some!

Steph is feeling fine except for an extreme case of being itchy! This itching kept her up the entire night in the ICU and has gotten a little better now. They stopped giving her Fentanyl via an IV for pain (the Docs think she may be allergic to it) and now she is on an oral medication.

Only unfortunate setback so far is that she cannot have liquids yet because her amalase (enzymes in the stomach) levels are 1000...and normally they should be 100. The doctors feel confident that this will come down soon, and she will be able to start a liquid diet (Yeah!!)

On a positive note, she has been up and walking 3 times already. And she was able to wash her hair this morning....now my bride looks like a million bucks (just doesn't feel like it yet). Also, her dry witted humor is alive and well. She jokingly asked one of the nurses while we were walking this morning "So, when is my pizza coming?" It took a moment for the nurse to realize that she was joking.

Lastly, please pray that she gets relief from the itching. The doctors are at a lost as to the fact that she does not complain of pain but of being itchy. Hopefully the oral medication will help her with the pain of surgery.

As for me, I am doing fine. I am thankful that we are stationed here in Quantico so that we could get this surgery, and I am thankful that I have a great boss who supports me in spending this time with my wife and family. Surgery sure does put life in perspective.

Take care...

Matthew

Post Surgery Update

Hi all,

Just wanted to send a quick update on Stephanie. The surgery went extremely well and took just over 5 hours. Dr. Cameron was able to remove the mass on her pancreas and only had to remove 5% of her stomach (vice the 15% we were expecting). He also found and removed another smaller mass near her pyloric valve, and believes that this mass may have been blocking the valve at times and causing her the burning discomfort that she has grown used to over the past 6 years! (YIPES). He does not believe this second mass to be cancerous, but Pathology will check it out and make sure.

She is currently in ICU and will remain there for the evening. She is quite responsive despite being heavily sedated. She is in some pain and is currently experiencing some nausea, but unfortunately this comes with the territory of the surgery that she had as well as her history of nausea post surgery. Overall, she looks great, and I can't wait to walk the halls with her tomorrow morning at 0500. (That's the doctor's orders--not mine!).

Steph is a true warrior, and she will weather this latest event with ease. I stand in awe of her willingness and ability to endure every medical procedure with a calm and accepting patience, always focused on the bigger picture of being a witness for the Lord in all her circumstances.

Thanks to all for the continued prayers. God is awesome and so are each and every one of you for your support.

Lastly, I am doing fine as I get the privilege of being supported in times like these by solid family members, Marines warriors and their families and the family of believers at NLCC. I don't think I can thank you enough for this support.

I will try and send another update in a day or two once we get her out of ICU and settled into her hospital room.

Still learning the Lord's way....

Matthew

2 days before surgery

I just wanted to send out a final note before the "big day". I am scheduled to have surgery at Johns Hopkins on Thursday. I need to check in for pre-op stuff at 10:15 on Wednesday morning. Then, we'll need to spend the night in the area so I can be back at the hospital for 6am on Thursday. Surgery is scheduled for 8:45am.

I've been quite busy; however, all my ducks are in a row (at least as much as they're going to be at this point). It is just amazing how the Lord works things like this out. We've had so many offers for help with meals, childcare, etc. Matt's mom is coming in later today to stay with the kids for a week. After that, they're going to a friend from church's house (The Nagy Family) until Matt gets them to come stay with us in the hotel after I'm discharged.

Matt will try to send out an email after surgery is over, but that will depend on how I'm doing & if he can get internet access. I'll be in ICU for at least 1 night & then should go to a regular room after that. If you want to call to see if I have a regular room, the # for patient information is 410/502-4000. You can also try to calling our house to get info from Matt's mom. Or you can call my mom. (I hope this is ok, Mom!!)

Thank you so much for your continued prayers, encouragement & support.

Confession

I just wanted to send out a quick note to ask some of you for prayer. Things have been hectic lately trying to get things together before surgery (in addition to normal daily stuff). I feel like my house & my kids are a wreck & that I have no control over anything right now.

Lots of people are asking how I’m dealing with all of this…quite honestly, I’m not. I just don’t think about it. It’s inevitable. I can’t do anything about it. It has to happen. I have no choice. Every now and then, I start to think about the specifics & going through things I’ve done many times before in the future that I never had any intention of ever repeating again…pain, NG tube (including removal), catheter, drainage tubes, staple removal, and effects of pain medication. I also think about other things like being away from the kids, no homeschooling, etc. I want to panic, but I have to stop the flow of thoughts, push them aside & focus on what’s important which is Christ as well as the present. I don’t know if I’m being naïve or not, but thinking about it won’t change anything. It won’t make the need go away. Nothing will be altered. I won’t feel any better or recover any quicker.

I don’t know why I’ve been placed in this situation (other than the fact that we live in a sinful, fallen world). I don’t know exactly what I’m supposed to be feeling or what I’m supposed to be doing. I do know that sometimes I feel quite numb…like I’m just going through the motions. I think that might be one reason why I’ve kept up with my service…I enjoy my youth (at both NLCC & MABC) & my time with them. It keeps my mind off the situation. I was very sad tonight. Early today was my last SHEEP (homeschool support group at New Life) before surgery. Tonight was my last Journey study (high school) at Mt Ararat before my surgery. I won’t be at either until sometime next year. I know it’s coming up with the other 2 groups this Sunday night (Trek at Mt Ararat & then youth group at New Life) as well as with cell/home group on Friday night.

Each day is just a step closer to the inevitable…a step closer to not being able to ignore my future. Sometimes, I feel like I’m on the verge of a pity party, but then I remember God’s grace & love for me. Anyway, there’s definitely an attack trying to get underway. The potential for stress is definitely available. I have a lot to do & limited time to get it done. I definitely covet your prayers and am thankful that the Lord has placed you in my life.

Surgery date

I just wanted to let you know that I’ll be having surgery at Johns Hopkins exactly 1 week after Thanksgiving. I’ll need to go into Baltimore the day before to do all my “check-in” stuff. Then, it’s recommended that I stay in the area until I report for surgery at 6am the next morning…I guess it kind of makes sense instead of driving 3 hours there & then 3 hours back on Wednesday & then returning really early Thursday morning to arrive at 6am. I’m glad that it’s on a Thursday b/c (once we have the kids taken care of for the weekend), Matt will be able to stay with me for the 1st few days after surgery until I can cut back on the pain meds & get all the tubes disconnected. Hopefully, I’ll feel like staying solo by Sunday or Monday night & that after that, it’ll be smooth sailing.

I‘ve been very excited & giving the Lord lots of praises b/c the combination of medicine (Aciphex & Xantac) that I’ve been taking has basically eliminated the pain I’ve been feeling. I’ve had 2 nights of sleep w/o any incidents! Both docs (Brown & Cameron) say that the meds shouldn’t be taking care of the pain I’m describing, but it is so I don’t care…docs don’t know everything, but the Lord does. I am so very thankful to be able to wear my regular clothes with a belt again!

Matt & I are looking forward to going up to Falls Church for the EWS Marine Corps Birthday Ball tomorrow. I think after all the hectic-ness of the past couple of weeks, it’ll be nice to just relax & hang out with Matt.

Thanks again for your prayers, encouragement & support.

Result of all that stress

Since you were specifically praying for my EXTREME FRUSTRATION the other day, I thought I’d share with y’all the results of all that stress on Wednesday…I have not one but TWO fever blisters/cold sores (whatever you want to call them) front & center on my top lip…it’ll look very nice for the ball on Saturday night. (Big sigh) Last night, when I was putting the kids to bed, it felt like something was starting so I put Carmex on it, & this morning, it’s worse. I might try the Abreva shown on TV. Oh well, not much else I can do about it…it’s just part of the cause-effect relationship. Because I stressed & worried, lost focus & didn’t fully rely on the Lord, I am experiencing a natural consequence of my choices/actions. Lesson learned? Unfortunately, probably not on this side of eternity.

Thanks again for your prayers…it was evident that they worked. I had a lot of peace driving up there, & the Lord moved a bureaucratic mountain in about 2 hours. Just amazing. Praise the Lord!

I recently read in a book (From Creation to the Cross) that based on the OT example, when prayer is answered, Yahweh needs to publicly receive the glory…private or internal thanks isn’t enough…we must share with others what he has done…just read Psalms to see the evidence of public praise for Yahweh. I remember our church in NC used to have a time during service to share what the Lord was doing in our lives. I took advantage of the opportunity a few times. Unfortunately, most people didn’t take advantage of the opportunity, & the practice stopped. We should always have a reason to praise the Lord for what He is doing in our lives. I promise to be more faithful to trying to focus on what Yahweh is doing & not on what I’d like Him to do.

I hope you have a blessed day.

Initial Visit with Dr John Cameron

Well, after a lot of insurance/doctor chaos yesterday, the referral to see Dr Cameron went through around 11am this morning while I was waiting to have the CAT scan done. It’s amazing that Tricare approved Dr Cameron’s request for the CAT scan even though they hadn’t approved my visit to him…sometimes, insurance companies make no sense. (For those of you who were aware of the situation and prayed, thanks so much. I was blessed by the Lord’s peace.)

Anyway, Matt and I left around 7:15 am and got there just before 10am. Traffic wasn’t too bad for DC rush hour; however, in some spots, it was just ridiculous.

Dr Cameron said that the mass isn’t dangerous right now and doesn’t even show up on the CAT scan b/c it’s flat. He explained the Whipple procedure and how there’s really no such thing as just resectioning the duodenal area which is about 1 foot long. Usually, the very beginning of the duodenum is left attached to the stomach and with the removal starting right above the bile and pancreatic ducts through to the end of the duodenum. He said that in my case b/c of the location of the mass at the beginning of the duodenum right after the stomach empties into it, he would have to remove 15% of my stomach (most people’s stomachs are 2 times the size actually needed), my whole gall bladder (he said that once the valve is removed, there is nothing to stop infection from entering the gall bladder and stones start forming in about 4 months and the whole thing has to be removed anyway), a small portion of the pancreas where the pancreatic duct attaches to the duodenum (I guess there’s no valve-system to worry about) and the whole duodenum (not able to save any of it even though only a portion of it is the problem).

He advised us of my 2 options:

1. to have the surgery now
2. to have endoscopies of the area every 6mos w/ biopsies of the area to check for changes in malignancy and then do surgery when it turns malignant

His own personal recommendation is to have the surgery…no use in putting off the inevitable and risking cancer (and chemo); however, he advised us to talk to my doctor. Dr Brown is supposed to call me Friday morning to talk about it. It was Dr Brown’s recommendation that I see Dr Cameron to talk about the procedure so I’m sure he’s going to advise me to have the surgery. It will probably be scheduled sometime after Thanksgiving.

We discussed length of surgery and recovery time. Since I am small and thin w/o a lot of abdominal fat, the surgery will only be 4½hrs (instead of 5½hrs). There will be a mandatory 8-day stay in the hospital. Then b/c of the distance from Quantico to Baltimore, I’ll be required to stay in Baltimore (I guess at a hotel) for 4-5 days when I go for a follow-up appointment. If all is well at that time, I’ll be allowed to return back to Quantico. He also said that I’ll have no dietary restrictions…just to use wisdom and avoid anything that may cause discomfort or problems…he really didn’t expect it to be an issue. I wouldn’t require any medication for diabetes either since I’ll be keeping most of my pancreas, and I’m not a borderline diabetic. His only real concern was my ability to maintain my weight. I figure I don’t really have a choice…the surgery needs to happen before it turns malignant…either way, I’ll eventually have to see how my body responds to having a slightly smaller stomach…hopefully, in time, it’ll stretch out some. I am trusting God to take care of me andthis whole situation…His hand is obviously upon it. I’d be foolish to say “no”.

So, basically, I’m looking at about a 2 wk stay in Baltimore away from Matt and the kids. Matt will do what he can so he can stay with me right after the surgery and then throughout the week. Of course, there are concerns about taking care of the kids at home and me at the hospital and then the hotel (it’s not like I’ll be ready to run around and get my own food or anything like that). I’m trusting the Lord to work that out as well.

Thank you all for your continued prayers and emails/phone calls with encouragement and support. Also, for those of you who wrote to say that you’re praying even though you haven’t responded to the emails, don’t worry…I know you’re praying and appreciate your prayers.

EXTREME FRUSTRATION

I still do not have the referral for tomorrow. In fact, I was told that it will not be ready until AFTER my appointments tomorrow. It was too late to talk to Dr Cameron’s office to see if he’d see me anyway so I left a message. The bottom line is that we have to leave as if I’m going to be seen for both appointments. Once Dr Cameron’s office opens, we can call & let his secretary know what’s going on & see if he’ll see me anyway. The referral will happen so he can get paid…it just won’t come through BEFORE I see him.

The bottom line is that the new PCM was leery about referring me to a doctor she knew nothing about. She felt that ethically, she couldn’t do it & that Dr Brown (the gastro) should do it. I did not find this out until 4:15…my appointment was for 3:15. A whole hour was wasted when I could have called my case manager & talked to her. Instead, I was talking to her after 4:40. Actually, the PCM’s office had problems with this earlier in the morning but never called me to talk about it. (ARGH!!)

On another note, I am very, very blessed that Amy Stark watched the kids for what seemed to me to be the never-starting & then quickly-ending doctor’s appointment. I certainly didn’t think the kids were going to be there for as long as they were. She was very gracious about the whole thing. I don’t mind other people watching my kids; however, I feel like she was taken advantage of b/c of the whole situation at the doc’s office…I certainly do not want to wear out my welcome or my friendship before this even gets started.

In any case, while I wasn’t pleased about the situation & I was having a pain attack at the time, the PCM did offer some help & insight. 1st, she prescribed me Aciphex to help with the burning (the downside is that it’ll take a few days to really work but should help if I don’t have surgery until after Thanksgiving). She also went over the photos of my previous scope & agreed with what Caelan & I found…there’s evidence that this was going on in 2003 (OK, it’s pretty bad when an 8-yr-old can look at a picture & say, “Mom, it looks almost like this” as he’s pointing to the most recent scope). The PCM also noted that my scope from 2001 shows the signs of the start of this ulcerated mass…I have been complaining since 2001 of the burning pain (which has now greatly intensified). I was surprised by Dr Bataille's memory & attention to detail b/c she remembered something I told her about my dad’s history when I was in the hospital. I guess I’ll have to wait & see if today was an isolated incident or if it’s likely to repeat. If it happens again, my case manager already said that we’ll have to switch to another PCM.

Anyway, I feel much better now than I did earlier; however, I’m thinking that

• I just took my 2nd dose of (yucky, yucky) steroids for a CAT scan I may not have tomorrow.
• I’m getting up to leave before 7am & driving through DC rush hour traffic to Baltimore for a visit I may not even have.
• I’ve arranged for 3 different people to watch my kids so as to not put too much of a burden on any 1 person.
• I’ll have WASTED 3 days with the kids, spent tons of time on the phone & driving around to get things ready & all I have to show for it is a house that’s a TOTAL wreck at this point
  Matt may have taken off for nothing & he is really, really busy with this presentation for Friday (you can also pray for that).
• I KNOW something is wrong. I WANT the pain to stop. I WANT the situation to be fixed before it gets worse.

Thank you for reading through this email. I hope it doesn’t sound too bad or like I’m having a pity party or anything like that. I just really, really feel like I’m standing at the entrance to where I want to go (right now, it seems like the Promised Land to me) & need to go through the entrance but am being told that (through no fault of my own) I can’t get in just yet. I don’t even know how to pray for the situation b/c I have no clear indication as to whether this is a “God-thing” or an attack by Satan. All I know is that He is able, & I am an impatient sinner.

I pray that we all have a blessed night of rest & lots of opportunities to praise Him tomorrow.

Insurance Chaos

I had a VERY BUSY day today and just wanted to send out an email to let y’all know what’s going on and answer some of the questions that I’ve been getting.

It never ceases to amaze me that I serve a mighty, mighty God. Whenever I get overwhelmed (like today) and think that I need to work hard and jump through hoops to get all my ducks in a row, He comes along and shows me that He had it under control the whole time and that He really didn’t need me to do anything for Him…including when I was fretting. At times like these, I am reminded that I am such a foolish little lamb. (WARNING: This is the very descriptive version of a day in the life at the Reis house. I decided to write as my de-stressing therapy for the day; therefore, it is rather lengthy.)

At 9am, I talked to Dr Cameron’s secretary to confirm everything for Thursday and to see what test results needed to be sent to him before the appointment.

I called my new PCM to schedule an office visit for tomorrow afternoon and also to request the referral to see Dr Cameron on Thursday. The referral coordinator said she’d work on it.

After that, one of the EFMP case managers at the base clinic called to tell me that I needed to get a Tricare case manager off base since my PCM is now a provider out-in-town. I called the # and was told that someone would call me back later in the day or tomorrow to ask a bunch of questions. Then my case would go to the panel to decide if I qualify for a case manager to oversee my medical needs and referrals. I should have an answer in 5 days. That was not what I wanted to hear…I needed the referral for my appointment on Thursday.

Right before lunch, Dr Cameron’s secretary called to move my appointment from Thursday morning to all day Wednesday. Dr Cameron wants a CAT scan of the area of the ulcerated mass before he sees me. So now, I have a CAT scan at 10:30 and then the appointment with Dr Cameron at 1pm. At this point, I’m thinking, “Oh great, now I have to get the referral moved up to Wednesday.” She also told me that the surgery wouldn’t be scheduled until after Thanksgiving…either the last week of November or the 1st week of December. I was very excited to hear this. As much as I want this surgery done and for the pain and burning to be over, I’m still thinking of everything that I need (or I should say WANT because in the grand scheme of things, they’re not really important to anyone but me) to do.

• I want to get all my ducks in a row so to speak…especially when it comes to getting the kids taken care of. I want their routine to be interrupted as little as possible. I don’t want them to miss co-op on Wednesday or gymnastics on Thursday afternoons. Plus Caelan has weekly allergy injections, etc, etc, etc. I’d just like some time to get it all set up and mapped out. (I don’t have to worry about keeping track of any of this because my wonderful TX friend Becca has volunteered to keep track of and coordinate childcare, meals, etc while I’m in the hospital and then home andrecuperating…she’s one-of-a-kind.)
• The EWS Marine Corps Ball up in Falls Church is this Friday…we have a room at the hotel. Caelan is staying with our friends the Buchanans, and Cassidy is staying with our friends from TX, the Jaworskis. I am so glad we’re still going.
• Caelan has a couple of specialist appointments related to his developmental delays as well as his vision and sensory issues. I’d like to be the one to take him.
• 3 Sundays ago, we resumed the senior high youth group at church (from its summer break…yes, I know, technically summer ended awhile ago…we’re a little slow). Then, this past Sunday, we added the junior high group to the mix. I’d like to be around for a few more Sundays (mostly for the gamesJ) before bowing out for surgery (I’m just joking…the lessons are important to me too). (I know, I know, surgery is more important than this, but I really, really don’t want to grow up. AND it’s really, really important to build relationships with these youth because they are our future. With the right perspective in place, life can be a lot of fun in spite of its circumstances.)
• I’m also helping with the Awana program at Mt Ararat Baptist Church. New Life wasn’t able to start their program this year so the kids are participating at Mt Ararat, and I’m working with the junior varsity on Sunday nights and the varsity on Wednesday night. Again, I’d like a little more time with the youth before having to be absent for awhile.
• Lastly, and this is truly, truly the lamest “want” on my list, but we’re becoming members of our church here. We were given a choice of which Sunday would be good for us, and we picked the 10th. I’d really like to be there for it. The staff and members of NLCC are just amazing. We feel very much at home already. I just want to be able to publicly make the commitment to them that they’ve already demonstrated to me and my family.
• Oh yeah, Thanksgiving with my family…I’d like to make sure I’m home and celebrating with the kids. It’s important to them.

So, after this, Matt came home for lunch and said that his FacAd had cleared his school schedule to go with me on Thursday. I said, “Well, that’s great, honey, because my appointment is now all all-day event on Wednesday.” Matt said that it should be fine for Wednesday, too. Then he said that Major Bragg told him that if I had the surgery after Thanksgiving, the schedule was lighter and; additional time off could be easily accommodated. So, God was working this out even before I told Matt about the latest details. He is AWESOME!

After lunch, I called back the PCM to let them know the appointment was moved up to Wednesday. She told me, “No problem.” Well, a couple of hours later, I got a phone call because there was a problem. (UGH!) After ironing out a lot of insurance confusion with them (I had to call Tricare and the doc’s office back and forth a few times), I was told that the referral couldn’t be put in until Dr Bataille saw me for my initial visit tomorrow afternoon. I was thinking, “How is the referral going to be approved for a specialist less than 24hrs later? I don’t even have a case manager to push it through?” I was starting to worry and panic because I didn’t want to cancel the appointment. I talked to Matt during a break at school, and; he reminded me of God’s faithfulness. He said, “You always do this, and it always works out in the end. The plans fall in place, and you worried for nothing. Just let it go.” I was thinking, “Oh yeah, that’s easy for you to say.” I did a few things around the house to take my mind off of it.

Around 4:45, I decided to change course and get out the house for a little while. I thought that since it was after work hours no one would be calling for anything related to any of this stuff. I figured the kids needed to get out of the house as well. At this point, I’d spend a majority of the day on the telephone so they were quite wild and unruly—at least in my book—by this time. I’m sure most of you moms know how kids can get when you spend almost the whole day on the phone trying to take care of important stuff. In fact, Caelan used part of the time to perfect his latest talent/trick…making gas noises with his armpits…he’s close to an expert now. (My brother Michael is very proud of his nephew’s accomplish…but just wait, he’s going to have his own child in February. Payback is coming!J) Sooo, we went to the clinic to get a couple of scripts filled (including my “miracle drug”…Zantac).

When I got back from the base pharmacy, it was 5:30…for some reason, it takes a long time to get civilian scripts filled at this base pharmacy. There was a message on my answering machine from a nurse case manager with Tricare. She’d called at 5:15 to get some info (just like I’d been told earlier in the morning). I called her back and caught her just before she left. After getting my GI medical, she determined that I would definitely rate having a case manager, but it would still take 5 days to go through the process. She said that she would operate as my case manager anyway until it was official. Now, all I have to do is have the PCM’s office fax her the request to see Dr Cameron and she would approve it right then and there. I was so thrilled…yes, I did confess to God and Matthew that I was fretting over nothing. Once again, the Lord has made my path straight.

So, this was just a crazy, crazy day for me. The above doesn’t even include taking care of the kids today or arranging for them to be taken care of on Wednesday. How can I ask someone to take them for about 10-12hrs? That’s a LONG time. In the end, my friend Kathy is going to come over and watch them from 7-9am (so they can wake up on their own and have breakfast). A very sweet older lady from church (Elaine) is going to pick them up and; bring them to her house to play for most of the day. Finally, sometime after 3, my friend Kim is going to go get them and bring them back to base so they can participate in the trick-or-treating festivities here on base. (It’s supposed to be amazing…military people who live off base bring their kids to base housing so they can participate. A neighbor said he bought 10 bags of candy last year and ran out. This will be Caelan and Cassidy’s 1st time going trick-or-treating…we changed our mind after reading the facts concerning the history of Halloween and; discovering that we had a lot of misinformation.

Well, I think I covered all the bases with this one.

Thanks for reading through this whole recount of my day. Thanks also for your continued prayers.

I pray that you have a blessed day.

Update from doctor's appointment

I saw Dr Brown (the gastro) today. He is referring me Dr John Cameron at Johns Hopkins. In fact, Dr Brown’s office just called to give me the phone # & said he’s already talked to Dr Cameron, & he’s waiting for my call…of course, since it’s lunch time, the office is closed. Anyway, the mass is basically on 1 side of the duodenum (the place where your stomach empties into your small intestines). The duodenum is where chemical digestion takes place…it’s where food is broken down so it can be absorbed by the rest of your small intestines. It seems that I’m going to be losing most of that area. The process is called a Whipple procedure/bypass. The size of the mass & where it stops is what will affect the surgery. If it stops before the bile & pancreatic ducts plug into the duodenum, then less reconstruction of the area will be needed. If it happens after, then either they’ll remove the gall bladder &/or pancreas or have to redesign where they plug into my body. If that happens, the surgery takes about 8-9 hours (YIKES!!).

I asked Dr Brown about the calcification of the pancreas & the other stuff that brought me to the hospital. He wasn’t sure what was causing all of that but thought that Dr Cameron could take care of it while he was in there. Please pray for wisdom & an accurate diagnosis by Dr Cameron so all of this stuff can be FIXED & HEALED. Basically, Dr Brown did say that if I hadn’t gone in with this undiagnosed issue, the ulcerated mass would have been malignant by the time I got my scope in January. So, praise God for the unexplained pain.

Anyway, Dr Brown suspects that Dr Cameron will want to see me & do his own evaluation/testing so I probably won’t have surgery for another 2-3 weeks…right around Thanksgiving. Recovery time will depend on what actually happens in the OR as well as how long it takes for my system to adjust & start working. Based on several past experiences, that could be 2-3 weeks. (I am praying that the Lord intervenes & causes everything to work quickly & smoothly…but then again, I pray that His will be done & accepted.)

On another note, I learned a lesson the hard way. I didn’t take the Zantac last night before going to bed…I felt “fine” & thought I didn’t really need it. (You know…like maybe it was in my head.) Well, Caelan woke me up at 3am to ask me if I thought his daddy could tuck him back in bed (he didn’t want to wake me up & get me out of bed…I guess to him it’s just better to wake me up & leave me in bed while Matt tucks him in…go figure). Anyway, I immediately realized I was in pain so I took the meds & managed to pass out again in spite of the pain. When I got up at 6am, the pain was gone. I don’t plan on repeating this lesson a 2nd time!

Thank you for your continued prayer, support, phone calls & emails of encouragement.

RELIEF!

I just wanted to send out a quick email to give praise to the Lord God Almighty. Last night around 1am, I received relief from both pains I was experiencing. It was very nice to be able to fall asleep without using drugs & without anything competing for my attention.J So far this morning, I’ve had a little of the burning return (it might help if I eat breakfast) but not the pressure. Thank you for your continued prayers!

Tricare has approved my visit to the gastroenterologist tomorrow…my appointment is for 8:30am. Matt has a test at that same time, but they’re letting him take it later in the day so he can go with me. Yesterday, I received approval from Tricare to change my primary care doctor to the off-base provider who saw me in the hospital. (It isn’t easy to get permission to go to an off-base PCM if you live on-base.)

Again, thank you for your prayers.

May the LORD bless you and keep you;
May He make His face (cause His Spirit to) shine upon you and be gracious to you;
May the LORD turn His face (smile) toward you and give you peace.

Biopsy results

I just wanted to send out an email to let you know the biopsy results came back today. Although I was told otherwise yesterday, they were going to make me wait until Friday. After talking to the doctor, the nurse was allowed to tell me that the biopsy showed a pre-cancerous polyp (Praise God!). That’s all she was allowed to say. I have an appointment for Friday morning at 8:30am (my time) to find out all the other details including his plan for surgery to remove the growth.

I am feeling pretty good right now; however, earlier today, it felt like someone had used my stomach as a punching bag.

Thank you for your continued prayers.

Trip to the hospital

I’ve been having abdominal pain off & on for the last 6 yrs or so…sometimes daily, sometimes not. The cause has never really been identified or diagnosed. Well, Sunday around 1am, I woke up with the burning pain, & it lasted for 2 hours. The same thing happened early Monday morning. It persisted off & on during the day on Monday…I just thought I must have eaten something that was causing trouble…not uncommon when you’ve had your large intestines removed. It happened again early Tuesday morning…I actually contemplated going to the ER at the time but didn’t. I called my gastroenterologist’s office (I didn’t really like him but hadn’t gotten insurance approval to see a new one yet), & they couldn’t get me in for a whole week. I called the clinic on base & couldn’t be seen until the next day. Based on my symptoms, the clinic told me to go to the ER. My friend Amy Stark took the kids, & another friend (Kathy Tart) took me to Potomac Hospital & stayed with me until Matt was able to come up later that night. Initially, the triage staff thought I had reflux (which I denied) but ordered some blood work & a GI x-ray. The x-ray came back fine; however, my lab work showed that my lipase & amylase were elevated…indicators of pancreatitis. They decided to admit me to the hospital & ordered an ultrasound of the pancreas, liver & kidneys. They all checked out fine, but based on the blood work alone, I was admitted for acute pancreatitis. A CT scan was ordered & showed that I had some spots of calcification on the top of my pancreas…a sign of recurring pancreatitis which was news to me. Pancreatitis is the inflammation of the pancreas & is very, very, very PAINFUL…like having 3rd degree burns on the inside of your body. OK, for those of you who know me well, I have a strong threshold for pain, but I doubt that it’s that strong. They’re thinking that maybe I’ve had chronic mini-bouts of pancreatitis…little, quick flair ups but not full blown attacks. Soooo, the testing continued. I had an MRI, then a 1½ hour x-ray of the gall bladder to test for its functioning (a bili-something-or-other). Both of these tested out fine. The gastro that was being consulted (Dr Josovitz) wanted to do an endoscopy with a view of the pancreas & the gall bladder at the duodenal area (beginning of the small intestine where they all kind of come together) which requires the use of a special scope is required that he wasn’t qualified to use it; however, one of his partners, Dr Brown, was. Dr Brown is the gastro I was trying to switch to! (Praise the Lord!)

Anyway, I had the scope this afternoon. Dr Brown wasn’t able to identify the source of the burning; however, he discovered something that became more important than determining the source of my burning pain. He found a mass at the opening of my duodenum. (The duodenal area has a very high malignancy rate which means that things can quickly & easily turn cancerous.) I had brought my copies of my GI records, including pix of previous scopes. He was able to compare it to the one I just had in February…the mass wasn’t there, but it looks like it may have been forming. He took some biopsies & should have the results on Monday. We have an appointment to see him Friday am. He’s going to make arrangements for me to be seen by specialists at Johns Hopkins (in Baltimore…just about 2 hrs away). Regardless of the biopsy results, the mass needs to be removed, & the surgery won’t be simple. Hopefully & prayerfully, Tricare will go along with Dr Brown’s plan.

I have been released from the hospital & am now home (& will be crashing into bed shortly); however, I don’t know how long I’ll stay here…I’m hoping it’s just the combination of the anesthesia from the scope this afternoon & the car ride home, but I’m nauseated…hopefully, a little rest & the phenergan will work wonders. It’ll be very nice being back in my own bed.

Everyone here has been just WONDERFUL! Matt was given the last 3 days off school. We’ve had numerous offers for food & childcare from base friends, Matt’s conference group, our church & the Baptist church where we do AWANA. I’ve had some visitors & tons of phone calls. My friend Becca Jaworski (we were friends back in TX & they’re stationed here now) has Cassidy spending the night at her house tonite…she should be having tons of fun reuniting with Nico. Another friend (Alayna Hudson) is a nurse in the ICU at Potomac…she came to visit me each day & was able to give me positive feedback concerning the internist & gastro that were assigned to me. I really feel like I am just where the Lord wants me to be.

As soon as we know what’s going on, I’ll give y’all an update. Until then, your prayers will be very much appreciated…the next few months will be quite interesting. This isn’t the 1st time that I’m going down an unknown path where I have no power or control; however, I do know that I serve Jehovah Rapha (the LORD who heals) who is omniscient, omnipotent & omnipresent. He loves me like none other & is holding me in the palm of His hand. Please pray for Matt & the kids as they go through this as well. Also pray that I am able to relax & rest & trust Yahweh & not be concerned with all my motherly duties that will be on the back burner.

Thank you in advance for your prayers.