Clean Bill of Health!

Well today it was official! I know we copied Dr. Lewis' email but we had Corey's actual appointment today and it was official! Corey no longer needs to go in for his routine checkups every month or his CT scans because there is no sign of Sarcoid in him. SO Corey doesn't have to go back in for EIGHT months!!! YAY!!! Huge praise report! He has to stay on his Prednisone for that time but it's only 10 mg and then if it stays gone for the 8 months, then he'll ween him off of it. Dr. Lewis just told us to pay attention to any little thing that may not seem right in his body, the aching joints, breathing, vision, etc. He made sure we have his number and email just in case symptoms come back, but I have faith that they won't! :)

This is so exciting!! Just thought I would share the exciting confirmation!

Miracles!!

You know, it's so amazing to me the power of prayer and how it seems like just yesterday Corey and I thought our entire world had turned upside down! Well, today proves that prayer works! We went in for his CT Scan which Dr. Lewis said he'd need every 3 months for a while, just to monitor everything and to make sure everything stays "at bay" and under control. We have been praying that it all goes well. Well, we already got the results from Dr. Lewis himself. Below is the email we received from him this afternoon:

Corey and Melinda,
The last CT scan looks great! I have not seen sarcoid lymph nodes shrink so much as yours have. I recommend reducing the prednisone to 10mg (1/2 tablet) every day until you see me some time later this month. I will be in Tacoma on September 29th and should be able to see you that day.
Let me know if you have any questions or concerns.
Dave

Can you beleive it?!?! First Corey was the worst case he'd seen, now he's the fastest healing he's ever seen! It's so wonderful to know that our lives are getting back to normal! Can you tell I'm happy? :)

Well, it's a great way to start off the weekend and again, as I always say on my Facebook, I'm so excited for what the future holds, because no matter what it is, I know that we can handle it together!

Thanks for the continued prayers everyone!! We GREATLY appreciate them!

Back to Normal Life!

So it's been a while (maybe too long) since we updated this, so we thought we should today after his appointment. Corey's been back to work now since July and pretty much back to normal life. Fishing all the time of course. That's how I know he's better! :) He had an appointment back in the middle of July and everything was still pretty normal. Dr Lewis was watching his glucose levels because they were creaping up from the Prednisone. His liver count was also still up a bit so he didn't change his med levels last month.

We went in this morning for his check up and all seems well. We didn't have the lab results back yet since we had them done just about 20 minutes prior to his appointment. But we're assuming everything is back to normal. We should know by the end of the day today though. Now we'll be going in the end of September for yet anoter CT Scan and then his follow up after that to make sure everthing is still looking good. All in all, things are pretty much back to normal. It's great!

Today, we're off to spend a couple days just the two of us and Bruce of course. I think we need it :) Thanks for all the prayers as always. We'll be sure to keep this updated still after his CT Scan.

It's Back to Work!

Well, I know it's been a while since we've updated the blog, but I suppose the time has come to do so! :) About a week ago, Corey had his 24 EKG to check his heart, then last Thursday was his Echocardiogram. We haven't scheduled the follow up to go over the results, but thank goodness with Group Health you can create an account to communicate with your Dr. directly online. We received an email this morning that both tests came back perfectly normal!!! YAY!!! That means his liver is getting much better, his lymphnodes have gone down and his lungs are all cleared up!!! So, Dr. Lewis gave Corey the OK to head back to work finally on 7/1. We're so happy!

Hopefully we'll have an appointment next week, we'll be getting another CT Scan in about 2 weeks just to make sure everything is staying healthy and it's not coming back. Corey is starting to feel the effects of the Prednisone. He's just now starting to get the "puffy" look, but frankly, as his wife, I think it's cute! haha.

Anyway, if there are any other changes, we'll update. Hopefully, the blog will become about other things now that Corey is getting better! We are so happy that he's ok!

Thanks for all the prayers and support!! They have been felt and so much appreciated, words can't even describe!

Update...

Well, today has just flown by. We were a bit anxious for today's appointment with Dr. Lewis because it seems that some of Corey's symptoms were coming back a bit. Last Friday after having a bad morning with the cancellations of his heart appointments and some other stresses, we decided to get away and just go camping over night. That day all day, Corey was having really bad sweats and again at night. They've been coming back a lot again it seems so we were concerned. Then on Sunday he went fishing and came home with very swollen ankles that were starting to hurt a little to walk on. So we called the Dr on Monday and left a message. We decided to wait until today (Wednesday) since we already had an appointment scheduled.

So today, we met with Dr Lewis to go over how he's doing and he actually wasn't too concerned that his symptoms are coming back a little bit. He said that with Sarcoidosis, this is very common having symptoms come back a little bit. He actually said we don't need to be too concerned unless they come back for a long period of time. SO for now we're not too concerned, but be sure I'll be watching him closely! :) Dr. Lewis also lowered his Prednisone dosage so he's only on 40mg now! YAY!!! So we'll see how he does with that. Dr Lewis did say to really watch to make sure they don't come back because if they do, he'll raise it back up again. So I'll be watching.

We also stopped by the Cardiologist to pick up his 24 hour EKG Halter Monitor. So he's wearing that until 1:57 tomorrow afternoon. :) Hopefully that comes back normal becase his EKG wasn't. Next Thursday is when we have his Echocardiogram, so may not have any updates since then unless we get the EKG results tomorrow when we take back the monitor tomorrow.

So until then....Ciao!

Heart Appointments

Well, I know it's been a week now, but not much has happened. Corey is doing good, up moving around and getting some stuff done while he can as long as he's able to. :) Yesterday, he had an eye exam to see if his eye's are being affected by the Sarcoid. The eye doctor said his eye's are pretty good still. One eye is worse than the other, but not bad enough for glasses yet. That made him happy of course!

Today we were supposed to go to the Cardiologist for an Echocardiogram and to pick up his 24 hour heart monitor. Well, we woke up to a lovely call to let us know they have to reschedule because the tech is out sick today. I was so upset. So we rescheduled and they can't get us in until the 25th now. I went ahead and made the appointment, but then I called Dr. Lewis to see if he felt this was acceptable. He said it's, the main thing he wants right away was the heart monitor. So we have that rescheduled for Wednesday, 6/17 immediatley following his appointment with Dr. Lewis. Then the Echocardiogram will still be on the 25th unless there are any cancellations earlier.

We'll be sure to keep you posted, but for now, no new news except for his eye's being good still. YAY!

We thank everyone for the continued thoughts and prayers.

Corey and Melinda

Consult about new CT Scan

Well, today was good news and still not so great news. We met with Dr. Lewis to go over yesterday's CT Scan and so we looked at them together. He compared both of them next to each other and Corey's lymph nodes have gotten noticably smaller!! YAY!!! He did say he's still pretty sure this is Sarcoidosis. It's not cancer, but he's still checking his biopsy with the pathologist. There's still nothing growing on it which is a good thing and confirms that this is sarcoid.

The not so good news is his liver count keeps going up, which Dr Lewis says might mean that the Sarcoidosis is in his liver now also. He said that the treatment would be the same so he's decided to keep him on the same dose of medication for now. He also looked at the EKG he had done last Thursday and didn't like what he saw so he's sending him now for an Echocardiogram and a 24 Halter EKG next Friday. We did learn that this disease can affect all other organs, so he's really watching it all. We'll be meeting with the cardiologist now for both tests on Friday afternoon, then follow up with Dr. Lewis on the 17th. Lastly, he's sending Corey for an eye exam since that's another major issue that's associated with this disease. Last week Corey made a comment to me that he was struggling to see the numbers on my phone so I'm glad he suggested that. I didn't think anything of it initially, but now I am.

So...All in all, this isn't cancer, still a scary disease that we hope isn't moving anywhere else but we'll find out. Dr. Lewis did say that he's never seen a case of Sarcoidosis be so aggressive. He said that's why everyone said it was lymphoma because with Lymphoma it can come on quickly. Corey's came within weeks and progressed so fast, where it normally progresses over a long period of time.

I'm glad we are really starting to treat the problem and that I get to see Corey up, moving around and being goofy again! It makes me happy!!

Thanks for the continued thoughts and prayers. I'll be sure to update if anything changes!

Corey and Melinda

Recent CT Scan

Well, I know it's been a week since our last update, but we haven't had any new news. Last weekend was a great weekend. Corey was up to fishing even! He went out with his dad, Devin and Alyssa (our neice and nephew) on Sunday to Westport and then again on Monday morning with his friend Carl. I love it when he gets to go because it makes him happy and lets me know he's really feeling better which makes me happy!!

Today, we went in for another CT Scan to see if the medication he's on has stopped the growth of his lymph noes and will have the results tomorrow morning with Dr. Lewis. Corey will also have his blood work done again prior so we're praying that any changes are only for the better, that all of his lymph nodes are either the same or smaller, although Dr. Lewis said they probably would would never go down if it's Sarcoidosis. Hopefully we'll get a definite answer tomorrow.

I'll be sure to update after our appointment tomorrow.

Corey and Melinda

Update

Well, we started off this morning by going to GH in Seattle and got Corey new Chest X-Ray. It looked like there was just a bunch of stuff that shouldn't be there was there. From there, we went to our appointment with Dr. Lewis to go over the X-ray and everything else/questions that we have from the last week or so. It was pretty much the same info we already knew. He was happy to see that Corey's swelling went down, But didn't seem to excited that he's still sweating all the time. He did say that he still thinks that he has Sarcoidoisis, however the night sweats still aren't very common with that. He said they are very "rare". Another thing that is still making him concerned is that the rate his lymphnodes were growing are NOT a symptom of Sarcoid. He said that by the time he went in for surgery the center part of his lymphnode that was pushing on his lung was dead due to lack of blood supply. The good thing is, his lung doesnt look like it's being pushed by the lymphnode anymore so that's good.

Some of the questions that we asked were about how long he should be having the sweats and pain. He said they should start going away soon if it is Sarcoid, so he'll be checking in on us every few days still. We also asked about the fact that everything we've read about Sarcoid says that his lungs should be affected by this as well, but so far it only seems to be his lymphnodes. He said actually that when he did the biopsy last Tuesday that he put some sort of fluid into the lung area and took it back out to check for the Sarcoid and that it was the best test and that it looked like his lungs were actually being affected, it just wasn't showing up on the CT Scan. He scheduled us for another CT Scan for next Wednesday to compare and see in detail if there is anything new or if anything is growing in the lung area.

So for now, we are still kind of hanging in limbo and treating him for Sarcoidosis with the Prednisone. Dr. Lewis did warn us that he will start to look like a chipmunk (hahaha) and will be hungry a lot so we'll be waiting for that. If this for sure does turn out to be Sarcoidosis, then he'll be on the sterioids at a high dose for at least the next 6 months. I'm still praying that's all this is and nothing else. Hopefully we'll know for sure soon.

Thanks as always for the continuted support and prayers and comments on here. They are truley encouraging and it's so great to get to hear from so many people! We love you all!

Corey and Melinda

Holiday Weekend

Well, it's been a few days now, but it was a good weekend! On Friday we got the news that we wanted, but were still in limbo, but it was still a great day. Corey started taking his Prednisone and it started helping him instantly. The swelling was reduced by half by Saturday morning and he was walking almost normal again! It was a nice sight. He still was feeling really tired, woke up with his night sweats and was really cold during the day, but all in all, you could see he was getting better. By Saturday morning, he had lost 18 lbs total since we were in Dr. Mesola's office, so in 12 days he lost 18lbs. Saturday we got a nice visit from his mom to say hi and brought me my birthday present. Yay. :)

After visiting for a bit, we headed out to Chehalis to visit with my mom while they were out camping. We had a nice visit and some dinner. Corey slept most of the time in the 5th wheel, but we still had a good visit. We decided to just spend the night and leave late morning/early afternoon on Sunday to head home. It was nice to "camp" at least one night this weekend since that is our normal. We'll have to make up for it when this is all over.

When we got home on Sunday, we decided to call all the troops (his sisters) and head over to his dad and Laura's for some yummy bbq and desert to celebrate birthdays. Corey was really starting to feel good by then so we had a good night with all the kids and a few sisters.

On Monday, we were a bit lazy at home, even though it was a gorgeous day out. In the late afternoon, Corey decided to meet up with his dad and they took the kids fishing at a near by pond by their appartment. I know he's been missing having fun with the kids, so that was good that he was able to do that. THAT made me smile! When he came home last night, he did mention that his ankles were beginning to hurt again. Since we have another appointment on Thursday, I didn't really worry too much about it, but noticed he is starting to cough a little more again. Not as much as he was, but just starting.

Luckily today, while I was at work, Dr Lewis (the FABULOUS Pulminologist that is so great!) called just to check to see how Corey did over the weekend. I let him know that his ankles are a little sore and that the cough seems to be coming back a little bit the last few days and that he's still sweating at night and during the day, but also freezing. He said he is going to order us another CT Scan but first will have us do a new Chest X-ray on Thursday morning before our appointment and then our consultation. After that, he'll order a CT Scan that will either be this week or early next (I'm hoping for this week obviously).

All in all, Corey is still doing MUCH better than he was this time last week so that makes me happy! I'll be sure to update again after Thursday's appointment and if we learn any new news in the mean time.

Thanks for the prayers as always!! They are definitley felt in this house!

Corey and Melinda

The results...

Well, today around 12 we hadn't heard anything so I called and Dr. Lewis was out to lunch, but they left him a message to call me back. So around 1:30, he called while I was out getting Corey some more meds to make him feel better. He said the good news is he's 100% sure Corey DOES NOT have Lymphoma! YAY!!! HUGE PRAISE REPORT!!! Bad news is he's still not 100% sure what is going on with him. He's still leaning towards the Sarcoidosis, however, Corey is having some symptoms that he says isn't normally assoicated with that. Some of those being the night sweats, steady fever, having his lymphnodes grow so rapidly. So he has to wait until the cultures come back from the Biopsy from Wednesday to see for sure. If it's not Sarcoidosis, then he's thinking it may be some sort of a Bacterial Infection attacking his lymphnodes. He did say that by Wednesday's biopsy, his lymphnode had gotten so much larger, that it actually was blocking a blood vessel and part of it was dead, so that's not good. Dr. Lewis did prescribe him some Prednisone to treat the Sarcoidosis which is the only medication that has made him feel ok since all of this started. He also left me his cell phone number and said he wasn't going anywhere this weekend and that if Corey wasn't better by tomorrow or Sunday that we are to give him a call and he'd meet us at the hospital to treat the pain. That was SUPER nice...what Dr would normally do that on a Holiday weekend non the less. So...we have an appointment with him on Thursday morning at 10am and guess we'll be in limbo AGAIN until then.

So all in all, it's a Huge releif that my husband does not have Lymphoma, bad news is, I feel like we're right back to square one again. So...no full relief until Thursday, the 28th! Bummer. Please keep praying that this is truly Sarcoidosis and that he'll be feeling up to par soon! Thanks!

Corey and Melinda

The Surgery!

Ok, so I knew these next few weeks would be long, but man I didn't really realize it until now. This morning I went into work since I haven't been there since last week and around 10am, Dr Lewis (the pulminologist) called and said he hadn't received the results back yet as he wanted them, so he wanted us to come in for surgery and that the Thoracic surgeon would be calling me shortly. I called Corey to let him know no food or drink as of that moment per Dr. Lewis' instructions. Bummer for him, he hadn't had breakfast yet. So within 30 minutes, Dr. F (Can't remember his name...haha) called and said to be at Virginia Mason between 2 and 3 to check in for surgery. We got there about 2:30 and man, they rushed everything as soon as we got there. So within I'd say 30 minutes, we were in the prep area just waiting for Dr. F to come and talk to us so I can go to the surgery waiting area. As we were waiting, Dr. Lewis surprisingly came in (We WEREN'T Expecting him at all) and said that he got his preliminary results back and that he was 90% sure that what Corey has is NOT lymphoma!! Yes....that is right!! Not 100% but 90% is still pretty damn good!! What he thinks he has is actually Sarcoidosis. It apparently has similar symptoms as Lymphoma. I don't know anythig about that now, but what I do know is it's NOT CANCER!!! So we were excited, but still not fully excited because there's still a small chance we're dealing with the lymphoma. So they went in and took a section of the lymphnode that is pushing on his lung. They didn't completly remove it, but took about a cherry size of it off for biopsy. That surgeon also said that's what he thinks we're dealing with, the Sarcoidosis. SO...we'll know for sure in 2 days...the difference in treatment, Cancer: Chemo and Radiation/Sarcoidosis: A little steriod medicine and go home and call it good. Get a few check ups every few weeks to follow.

SO...please pray that when the results come back, this IS NOT CANCER, but a little other known disease that's MUCH better to deal with! Thanks for the continued prayers, we definitley felt them today during surgery!! We are at home now and again, Corey is sleeping. He has a very bad headache from the anesthesia, but other than that is doing great. I will update on how he's doing tomorrow and as soon as we get the results back!!!

Always,
Corey and Melinda

Long Day!

Well, today was a long day at the Hospital in Seattle. We started off with a Breathing appointment at 8am. After they decided that everything was ok there, we waited for 2 more hours and got in for our consultation at 11am with the Pulminologist, Dr. Lewis. Might I say, he is awesome!! We went over everything, he examined him and decided that yes for sure we would do the biopsy today. Before that, he wanted to go over the actual CT Scan with us so we could see the difference in a matter of 4 days. It was definitley obvious! The right hylar (sp?) lymphnode looks like it has doubled in size. A bit scary and concerning of course, but the other thing that we didn't know before is that it is pushing on his lung so now that is partially collapsed. He didn't seem overly concerned about it yet, but he did say that if he doesn't get results back by tomorrow, that he is going to send us back for surgery to have it removed. The Dr took Corey back by 12:15 and we were leaving the hospital by 3:15.

So now we're home, Corey did great through the biopsy, he did say he remembers all of it but that it wasn't painful, just uncomfortable. He is now just sleeping on the couch and will probably be out for a bit, but that'll give me time to get a few things done that need to be. :) Hopefully we'll know tomorrow next steps. As always, thanks for the continued prayers, I'll be udating as soon as we get the results tomorrow.

Corey and Melinda

Getting Into the Pulminologist

This weekend was a long weekend. The not knowing and just waiting on doctors is the hardest part. On Saturday we went grocery shopping for Corey's dad's surprise party and I think that pretty much drained him. That entire afternoon, even with my folks here, he just slept. Yesterday, we had the big party and he was up and energetic all day long. It was great, but I know it was hard too at the same time. The party turned out great though!!

Well, this morning I called the Pulminologist and they said the earliest we could get in would be Wednesday. In my opinion, this is unacceptable, so the Nurse said she'd look into another location as long as we were willing to drive farther that might get us in earlier. So around 9:30, a Nurse at the Bellevue location called me back to say that they too couldn't get us in until Wednesday. I explained to her why I was so concerned and that I wanted to talk to anyone that would help me. I was very upset (trying not to cry) and said that if they can't get us in today, that I want to have the consultation and the biopsy at the same time then. She told me she'd also make some phone calls and get Corey in as soon as possible, even if that meant we had to leave the Group Health Network. By 12, I heard from a different Pulminologist at Group Health in Seattle and they are getting him in tomorrow at 10am for the consultation and the Biopsy immediatley following. He is hoping he can get enough of a sample through this procedure, so we'll know in the next day or so what type we're dealing with and next steps.

Hopefully I'll have another update for you tomorrow evening of what will be happening next. Please keep the prayers coming we apprecaite the all.

Corey and Melinda

CT Scan results...

Well, at 3 today I called and the Nurse said they had the results so she had Dr. Mesola call me back by 4. He said there's good news and bad news, the good news is they didn't find anything in his pelvic or abdominal area! YAY! This means it's all in his lung area currently. The bad news is they happened to get a small glimpse of the lower part of the affected area in his lungs and it's already much larger than on Monday...IN FIVE DAYS! So, he was calling to see if we can get into the Pulminologist on Monday rather than next Friday to get his biopsy and get this stuff going. I'll keep you posted as to our "updated" schedule.

As always, thanks for the prayers!

Corey and Melinda

CT Scan...

Well, this morning was a long morning. Corey was in a lot of pain this morning, I think worse than he's had since this all started. He couldn't stand on his own so he crawled back on the bed until I could get him some medicine. Unfortunatley, neither of us thought about the fact that he couldn't eat anything, so he took the pills, slowly got in the shower, but then got really sick. Also he's been very tired and the sweats are beginning to happen more frequently, not just at night, but also during the day time. It is a little scary and a wake up call that this is the beginning of it. A bit overwhelming, but I know we'll be ok. We have LOTS OF support.

So anyway, we eventually got to the hospital for his CT Scan, of course they haven't told us anything, but I'll be calling at 3 today to see if we can at least get preliminary results. The Dr. told us that we wouldn't hear anything until Monday, but I'm sure we can get something today. We'll see. I'll be sure to post on here at quick note about the results as soon as I get them. :)

Thanks for the continued prayers!!!

Melinda and Corey

The beginning...

Well, here's the beginning of a long road ahead!

First the history: For about the last 5 weeks or so, Corey has been having a lot of pain and swelling in his joints and had gradually gotten worse. He's also been having sever night sweats and chills at night. After about 2-3 weeks of this, we got him into the Dr. She did blood work and examined him and thought he had a possible bacterial arthritis infection or lead poisioning. She tested him for both and it only looked like the infection, so we started him on antibiotics. After 10 days of pills, we didn't notice a difference, only that things seemed to be getting worse with his ankles. This is where most of his pain seems to be. Since the pills didn't work, she decided that if he could handle giving himself shots or if I could do it (I tried really hard, just cried and couldn't. :( ) So he chose to give himself shots. She also suggested we go in for a chest x-ray just to make sure we're not missing anything. On Friday morning the report came back from the x-ray that wasn't to clear, so we were then sent for a CT Scan. We originally had that scheduled for this Friday 5/15. So after the 4th day of taking the shots, he still wasn't better, just staying the same/worse. So she sent us to the hospital. We sat in the ER on Monday 5/11 for 9 hours. It was long and grueling, but I'm glad we did. They decided to go ahead and do the CT Scan there. The preliminary results that we got back that same day suggested Corey had lymphoma. So we got into his PCP right away on Tuesday afternoon and he agreed, his lab work also suggested lymphoma.

SO...we are now on the long road of appointments and care. Tomorrow 5/15 we have the original CT Scan still, but now it's for his pelvic and abdomen area to see if there is lymphoma anywhere else other than the chest. The following Friday, 5/22 we'll be meeting with a pulminologist to do a breathing test, then a consultation to go over the CT Scan and schedule a biopsy. That might change if they find lymphoma in his other areas, but I'll keep you posted on that. After all this, we will see the oncologist and begin discussing treatments and hope to get all of our questions answered that we have. There are a TON of them!

We've created this to keep everyone updated on his health as his appointments happen and as things change. Thank you so much for all the support and prayers. We do read every email and listen to every voicemail, even if we don't respond, please know that it's all appreciated! You can always come to this if you have any questions about stuff going on. Thanks again!