bump in the road (4/29 update . . . and a little of 4/30)

Sorry, guys, I started this blog post last night but just couldn't stay awake to finish it. Yesterday was an exhausting day.   

Yesterday - 4/29

I guess it was bound to happen at some point. We hit a bump in the road. Mom was trucking right along until the tube feedings were started on Sunday. The GI "upset" that she was having continued all night Sunday night and yesterday morning. Yesterday they stopped the tube feedings until we could get her stomach calmed down, and her GI problems had improved drastically by yesterday afternoon. They also put her back on her home meds, which include antidiarrheals.

Also yesterday the pain doctor took out her epidural. Sad day. :( Because of the aforementioned GI issues, her first dose of J-tube pain medication (which is essentially just like taking oral medicine) ended up being delayed, which resulted in Mom's pain getting really bad. It's much harder to get control of the pain once you've let it get ahead of you. She ended up receiving two pain meds by IV and one by J-tube and finally got some rest and relief around lunchtime. By last night, Mom's pain and GI issues were both better and she was able to get up and walk, talk on the phone, watch TV, etc.

Yesterday was definitely Mom's most discouraging day yet. For some reason we hadn't been getting any of the cards that people have been sending, but that's okay because they all came yesterday afternoon. Mom couldn't have gotten them at a better time. :)

It was also my most discouraging day yet, and God sent some encouragement for me as well. Our friends Cindi and Nancy took me out to lunch and to a cute pottery shop. I was in desperate need of some sunshine and a couple hours away from the hospital. And Mom was in desperate need of needing to see me have some normalcy. Win-win!

Today - 4/30

Things are a bit better this morning. As far as GI problems go, they're not totally resolved, but they're better. Mom's J-tube feedings were re-started this morning using a formula that is supposed to be easier on her system. They were started at a slower rate as well (they run continuously). However, she threw up about 45 minutes ago, so the feedings are currently on hold for an hour or so. The nurse said the potassium he gave her earlier could have caused the nausea. He gave her some Reglan for nausea and will probably start her feedings back after it has a chance to work. Mom's sleeping now. She's still only allowed to have clear liquids by mouth (tea, juice, water, jello, popsicles).

Her pain has been pretty well-managed since yesterday. IV Tylenol is the only thing she regularly gets for pain. If she wants anything stronger than, she has to ask for it, which she does pretty much as often as she can. This is more of a hassle than having an epidural continuously delivering pain medication, but I think it's working okay. The IV pain medicine makes her a little loopy and sleepy, so she's not always quite as alert as she was with the epidural.

We went on a short walk this morning and got to see a helicopter come in. There's a window with a window seat at the end of our hall. It has a perfect view of the helipad and every day we try to catch some excitement. Today we finally did, though it wasn't nearly as exciting as Grey's Anatomy. ;) Life in a hospital can get pretty boring, though, so we'll take what we can get.

Still haven't seen Dr. Martin today. I'll try to update tonight with a report of the afternoon. Pray that Mom will be able to tolerate these tube feedings!

hanging out at our window seat last night

thirst no more (4/28 update)

We were so happy to see our friend Cindi today! Cindi's in town visiting her friend Nancy (and now also Trish), so she and Nancy hung out with us for a while this afternoon. And then they took home my laundry to do. :) Not long after they left, a couple we didn't know walked in the door. At first Mom and I thought they had the wrong room, but then they explained that their son-in-law works for the same company as my dad. He'd told them about Mom being here. Knowing we were six hours away from home, they wanted to come see us and give their phone number in case we needed anything. How sweet is that?? 

Mom's had a pretty good day, but a very long one. The day started off with the good news that she was going to get to drink clear liquids! She's taken that very slowly, as her instructions were to "sip." She also started getting nutrition through her J-tube (feeding tube) today. That has also started very slowly and is being continuously administered by a pump. So far, she's tolerated the clear liquids/tube feedings well in that she hasn't had any nausea or vomiting. However, she has had some other "GI upset", if you will. Apparently this is not all that uncommon, but it is exhausting; we plan to ask Dr. Martin about getting some meds for this in the morning. Mom has also had issues with her J-tube today. It's functioning properly, but it's started draining a lot of fluid around the insertion site. This has resulted in numerous gown and a couple of linen changes today. All of this (trips to the bathroom plus wardrobe changes plus regular walking) has really worn Mom out today. She's especially tired and also hurting tonight. Her epidural wasn't cutting it, so her nurse just gave an IV pain med (the first she's gotten since surgery). She's feeling a little better now and is going to try to get some sleep. 

Prayer requests for tonight/tomorrow . . . a restful night (last night we were up and down a lot with trips to the bathroom) . . . better tolerance of the clear liquids/tube feedings . . . and good pain control (we're expecting them to take her epidural out tomorrow). 

I'm off to turn my couch into my bed. Goodnight all! 

   

the Saturday evening post (4/27 update)

It doesn't feel like a Saturday. Or maybe every day lately has felt like a Saturday. They're all running together.

Today has been a good one! Still no GI activity, but Mom has made improvements in other areas. They took her catheter out this morning, and she's had no trouble with that. They also took her NG tube out tonight (tube that goes from her nose to her stomach and drains fluid off), so pray that she'll tolerate that well (nausea/vomiting is a possibility). She is so happy to be rid of that big ol' tube! And she's been able to stay off oxygen for over 24 hours now, so I think it's safe to say she's done with that. Now her attachments just include her IV fluids/meds (given throught her port in her chest), her heart/oxygen monitor, and her epidural in her back; she'll likely have all those things for a few more days. Mom has gotten up and walked the halls a couple of times today and has also gotten out of bed to use the bathroom a few times. Once she's up, she really doesn't need any help walking - she uses her IV pole to stabilize herself. Her pain has been very well-controlled by her epidural - we are so thankful for that! Her blood pressure and temperature have both been normal, her heart rate has been a little lower (but still high), and her white count was about the same as yesterday.

God blessed us today with visits and phone calls from friends and family. Our dear friends Mark and Wanda came to see Mom today. They live a little over an hour away from here. Mom loved seeing them and it was good to see some familiar faces. Mom also got to FaceTime with some family tonight. I know it helps everyone back home to be able to see her face, and I know it helped Mom to get to talk to her grandkids. :) Dad left this afternoon and made it back home safely tonight, so it's just Trish and me now.

chatting with Jared & kids

Good Saturday! For Sunday, pray for no infection, no nausea, no cancer, as little pain as possible, and some GI activity (i.e. - for Mom to be able to drink!). Also continue to keep Dad, Jamal and Tekia in your prayers.

We miss our friends, family, and city, but we're being well taken care of here in Louisville. The care that Mom (and I!) has received has been amazing. Now if I can just manage to not get myself killed trying to drive on all these one-way streets . . .

moving day (4/26 update)

Mom had a good night last night, and we both got a good bit of sleep. Then Dr. Martin came by bright and early and declared today "moving day." He wanted her up and out of bed once an hour. She could walk the halls or just walk in place by her bed. They say day 3 after surgery is the worst - maybe this is why. We both went back to sleep for a couple hours. I got up around 9:30 and went to the bathroom to get dressed. When I came out about 10 minutes later, the room was full of nurses and clinical assistants helping Mom get out of bed. She had called them. Dr. M said walking would help get her GI system moving . . . a moving GI system means she can have some water, and she wants water! After getting all her tubes and wires unhooked, she was off with the help of Dewayne, a big guy who prides himself on being the best "walker" in the unit. It was her first time up and she did great! She was up for 20 minutes!

Trix and Dewayne

Getting a virtual tour of Louisville from a waiting room window

The rest of the day she just did the walking in place thing by the bed (not every hour, but at least every couple). It's just a lot easier to do that with all her tubes and wires - she's got an epidural in her back, IV fluids running into her port in her chest, an NG tube in her nose, a heart monitor, and a catheter. We're hoping she can lose the NG tube and the catheter soon.

Today was a good day for pain and blood pressure. :) Not so much for heart rate. :( Her heart rate usually runs high (90s), but the past couple of the days it's stayed over 100 most of the time.

Her temperature was normal all day . . . until tonight when a low-grade fever popped up again. Her white count is also slightly elevated, so infection is a concern. 

So tonight (or today since I'm getting this up so late) Mom needs prayers for: no infection, GI action, pain management, and no more cancer. :)

threshold crossed (4/25 udpate)

Wow. Even after all the times that God has been faithful to restore my mom's health, I still can't believe yesterday happened. We've felt like doors have been slammed in our faces over and over again for almost four months. We could see this one, strange door way off in the distance. And though we wanted so badly to get to it, we didn't know if we ever would. It was more of a swinging door - open . . . closed . . . open . . . closed. Light . . . dark . . . light . . . dark. Then came Monday. Open?? Light?? And yesterday we crossed the threshold. Open. Light.

It still feels surreal, but Mom has the incision on her belly to prove it. The nanoknife surgery that we have waited for and hoped for and prayed for actually happened yesterday. Once again I find myself overwhelmed by God's faithfulness and so, so thankful.

Last night after surgery, Mom did awesome. Like, crazy awesome. She was texting and calling friends and family. Talking our ears off . . . . especially about how much she loved her epidural. ;) She didn't sleep at all last night but it didn't seem to bother her. As soon as I woke up around 5:30 this morning, she started chattering away again.

That changed as the day went on, though. Mom's pain level got really high this morning, then got better this afternoon after a couple of visits from the pain specialist and adjustments of her epidural rate. She's hurting some now but is doing much better than this morning. Another issue has been her blood pressure. It got very low several times last night and once this afternoon. Extra IV fluids have helped, but they don't want to give her too much fluid. If Mom continues to have blood pressure problems, they may have to decrease her pain med again, as the epidural can cause low blood pressure. She still has an NG tube in her nose (to suction fluid off her stomach), and she hates that. Her GI system still seems to be "sleepy" from surgery, and, until that changes, she can't have anything to eat or drink. She's so thirsty! She's also running a low grade fever tonight. And she's tired (you know, because she hasn't slept since surgery).

So tonight we need to pray for good pain control, stable blood pressure, no fever, GI system "awakening", and sleep!

Mission accomplished??

Surgery's over, and Dr. Martin says it went well! He didn't see any signs of metastasis and he felt like he was able to do exactly what he went in there to do. He didn't have to remove any of her pancreas. We won't know for sure if it worked until her next PET scan, but he's expecting that scan to be negative. :) No ICU needed - she's headed to a step-down unit. She's doing well and we'll probably be able to see her in an hour or so. Praise God for another great day!

3 hours and counting

Still waiting! Our good friends Keith and Patty drove almost all night from Memphis to be with us, and our friend (and former minister) Mark is here from Leitchfield, Kentucky. So Dad and I are in good company. :) We've gotten no updates, which is making us a nervous wreck. But there's an airport-ish TV in the waiting room that lets us know where the patient is at all times. Mom's still says "in surgery." We're taking that as a good sign!

But seriously, wait is a four-letter word.

Surgery has started!

Surgery actually got started about an hour and a half ahead of schedule! I know . . . what kind of hospital is this?? Mom has been back there about 20 minutes.

I'll try to post udpates as I get them. You can also check my twitter updates by clicking the link on the left side of the screen (you don't need a twitter account to read them). And of course facebookers can check for updates there. I'm feeling extra social today. ;)

"Do not be afraid. Stand firm and you will see the deliverance the Lord will bring you today . . . The Lord will fight for you; you need only to be still." -Exodus 14:13-14

possibility city

Oh friends, what a long, blessed, crazy, stressful couple of days we have had. We've been in Louisville since late Sunday night, and I'm just now getting a chance to type out an update.

First things first (for the non-facebookers) - MOM'S HAVING SURGERY AT NOON TOMORROW! Praise God that her CT scan showed no significant changes!

Yesterday Mom had about a week's worth of appointments and tests in seven hours. She had a CT scan, a consult with Dr. Martin, pre-op registration, blood work, a chest x-ray, and a consult with anesthesia. it was a whirlwind, but an efficient whirlwind. We can't say enough good things about the care Mom's received here so far. We had a great meeting with Dr. Martin. Mom loved him. He obviously knows a lot about pancreatic cancer; he does these surgeries 2-3 times a week. He said that Mom has a retroperitoneal recurrence (in same area where the cancer originally started), which is common. What is very uncommon is that that is the only place the cancer appears to be. Usually pancreatic cancer metastasizes to other places when it recurs. The fact that Mom has no metastasis is what gives us a(nother) chance to get rid of it. If, after opening Mom up tomorrow, Dr. Martin sees cancer anywhere else, he will not be able to complete the surgery. He said there's about a 10% chance of that happening. Obviously this would be devastating, so we want to pray that the CT scan is accurate. Scar tissue from Mom's Whipple surgery could also present a problem, so we want to pray that Dr. M will be able to reach the tumor easily. Once he reaches the tumor, he will not remove it. He will place the nanoknife probes around it and "zap" it, hopefully killing every cancer cell inside. if the nanoknife works, the tumor will die and turn into scar tissue. However, we probably won't know for a while whether the nanoknife was successful or not. Lots of lessons in trusting God here. :)

The surgery is scheduled to begin at 11am central time, but one of the nurses yesterday told us they may be able to get started a little early. It should last 2 - 3 hours. We've got people covering Mom in prayer from 10am to 2pm. Feel free to join them and feel free to pray after that time, just in case surgery goes long. Mom will probably come out of surgery and go home with a feeding tube called a J-tube in her stomach. Dr. M does this for all of his patients to make sure they don't lose too much weight. This will be temporary and will be removed when Mom's doctors (probably her Memphis doctors) feel that she can maintain her weight without it. Mom will likely spend tomorrow night in ICU and hopefully move on to a regular room on Thursday. Dr. M expects her to be in the hospital 4 - 5 days, provided there are no complications.        

The non-medical portion of our stay in Louisville so far has been the most stressful part. I'm too tired to tell that whole story right now, but I do want to say thank you to everyone who's offered to help us find/pay for a new place to stay. The hospital hospitality house was not at all what we expected or what Mom needed, and we've been overwhelmed by all the offers of help and housing we've received - some from complete strangers. We are currently in a new, clean hotel room. We probably won't stay here the whole time, but it's working for now.

Here are the prayer requests for tomorrow . . .

• Pray for Dr. Martin, the anesthesiologist, and the rest of Mom's health care team as they try to provide her with the best and safest care possible. 
• Pray that Dr. Martin will see no metastasis when he opens Mom up tomorrow and that he will be able to proceed with surgery as planned. Pray that he will able to effectively destroy every part of this tumor and that this surgery will be completely successful in making Mom cancer-free! 
• Pray that Mom will have a smooth recovery with no complications.
• Pray for Jamal and Tekia as they go about their days in Memphis tomorrow. Tekia will be taking achievement tests at school, and Jamal will likely be hanging out at home (he's homeschooled). Jamal especially seems very worried and he will probably have the hardest time waiting for new about Mom.
• Pray for Jared and Shelby and their kids as they wait for news in Little Rock.
• And pray for Dad and me as we wait in the waiting room. Pray that God will give everyone in our family his perfect peace and that we will trust him completely throughout this journey. 
• Also, pray for our friend Kate. Kate is the 29-year-old daughter of some of Mom and Dad's friends, and tomorrow is a big day for them as well. Kate was recently diagnosed with metastatic lung cancer and has her initial consult at MD Anderson tomorrow. Pray both of our families will end tomorrow with so much HOPE!
• Most importantly, pray that God will use every part of this journey for HIS glory! Pray that He will be glorified by what happens in Mom's operating room tomorrow and that each of us and those surrounding us will get to see Him in action. 

I read somewhere that Louisville is called "possibility city." I think I see their point.

"Now to him who is able to do immeasurably more than all we ask or imagine . . ." Ephesians 3:20

next stop: Louisville

Mom passed her stress test yesterday which means she is ready to go to Louisville! We leave on Sunday afternoon. The next big hurdle is the CT scan on Monday. Pray for no surprises there!

the latest and greatest on the Trixster

No, no one calls her that.

Yes, I think we should probably start. Now.

Well, if you haven't heard via facebook/word of mouth . . . we're going to Louisville next week! We finally heard back from Dr. Martin's office - he said yes and come on! Praise God for His faithfulness!

Dr. M requires his patients to have a stress test before surgery, and Mom will have that done this Wednesday. If all goes as planned, Mom and I will leave for Louisville next Sunday. On Monday, she'll have a CT scan. On Tuesday, we'll meet with Dr. Martin, and, Lord willing, on Wednesday, April 24, Mom will finally have this nanoknife surgery we've been praying about!

Still have questions about what nanoknife is? It's also called irreversible electroporation, and this site explains the procedure well. Watch the animated video on that site; it's not too long and really informative. The only difference between Mom's procedure and the one described on that website is that, instead of being guided by CT scan or ultrasound, Mom's nanoknife actually be done during surgery.  

We've been told several different things about Mom's length of stay in the hospital . . . anywhere from 3 to 10 days. We're guessing she'll probably be there around 5 days. She has to remain in Louisville for at least 10 days. I will probably stay with Mom the whole time, while my dad and others will be making trips up to see us (okay, her) while we're there. it's just easier for me to take off work than Dad; plus it helps to have a parent home with Jamal and Tekia as much as possible and it helps to have a nurse with Trish as much as possible. Where we'll be staying is still up in the air. We'll most likely be at a hospital hospitality house, which we think is on a floor of a nearby hotel. The rates there are much cheaper than anywhere else.

Here are this week's prayer requests . . .

• stress test this Wednesday - Pray that it will show Mom's heart is in good shape and able to tolerate surgery (despite the many rounds of chemo it's endured).
• CT scan next Monday - I'd be lying if i said I weren't nervous about this. This is big. This will be happening 6 weeks after Mom's last chemo. If there's any sign of metastasis, there will be no surgery. Pray for another "no change" scan! Pray that there will be no signs of breast cancer anywhere in Mom's body and that her pancreatic cancer will be the same size or smaller!
• meeting Dr. Martin - it's a little unnerving to be going to a strange doctor in a strange place and trusting him with your mom's life after meeting him one time. Pray that our meeting with him on Tuesday will go well and that we will leave feeling confident in our decision to be there. Pray also that Dr. Tauer and Dr. Martin will be able to talk in the meantime. They've been playing phone tag and I, for one, would feel better If I knew that Dr. T trusted him. ;)
• surgery - Pray that it would be completely successful in removing every bit of cancer from Mom's body! Pray that she will not have any complications and will recover quickly. 
• our family - Mom spent two weeks in the hospital after her Whipple surgery two years ago, and that was hard on all of us, especially Jamal and Tekia. Two weeks with her and me in another state is going to be harder. My dad obviously wants to be with my mom as much as possible, but also needs to work and be here for the kids. There's talk of taking the kids to Louisville for part of the time. Tekia has achievement testing, along with the usual drama that most girls in middle school face. Jamal is usually home-schooled by Mom, and he has his own struggles. This is going to be hard. Just pray for us to make it through this in one piece.
• Pray for God's glory to be revealed in all of this . . . the fact that He's brought us this far, the way that He cares for Mom, the way that He cares for our family, the way we respond to all of this. There is huge potential for God-glorifying here, and we don't want to waste it.  

"Let us hold unswervingly to the hope we profess, for He who promised is faithful." -Hebrews 10:23

a week of no news

No, we're not holding out on you. We're still waiting for Dr. Martin in Louisville to review Mom's latest scan. He was out of town last week. He'll be back tomorrow and his physician's assistant (whom Mom talked to on Friday) is going try to get him to review Mom's case ASAP. Once he does that, he'll probably call Dr. Tauer to come up with some type of plan (we hope!), and then one of them will get back with us. We know from experience just how busy doctors are and that how it sometimes takes days of trying before they can connect with another doctor on the phone . . . we're praying that won't be the case this time! We hope to have some news in the next couple of days.

Meanwhile, Trish is doing great! She still has her moments, but, overall, the last few days have been very "normal" for her. She's eating well and she's now stayed hydrated for over a week with no IV fluids - win! I think she's even gained another pound or two!

Here she is at an Easter egg hunt with her two youngest grandkids, Chase and Avery, last weekend. :)

I'll update when we know something. Thank you for praying!