Wednesday, October 31, 2007

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.

Tuesday, October 30, 2007

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.

Monday, October 29, 2007

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.

Friday, October 26, 2007

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.

Thursday, October 25, 2007

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.

Tuesday, October 23, 2007

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.

Saturday, October 20, 2007

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.