Uncool Pelvic Back Pain

We have had a busy week! After the Depocyte, I continued to have days of no bowel movements and increasing bloating and irritability in my bowels. I saw two doctors and finally got enough medication in my to help things along. Every time I eat I still blow up like a balloon, and have went off my healthy cancer fighting diet to a low residue diet. It’s what I did last September when I was diagnosed with three partial obstructions. I really didn’t get worried until my kidney started giving me pain in my back. That was Saturday on the way up to Ellijay, I just couldn’t get comfortable in the car and was thinking this is not good, but there isn’t anything I can really do until Monday. So what did I do? Enjoyed the mess out of the cold birthday day for my dad. We hiked all over the place, listened to the water running through the valley, and even played in the spring a little. We had an awesome day! That night we came home, put the kids in bed and I was feeling good! Maybe just a fluke. So I decorated the kitchen for breakfast and off I went. Valentines Day was once again magical. We cooked heart shaped cinnamon rolls and pancakes and went all out with bacon and sausage and notes and candies, and chocolate covered strawberries of course! Then we went to church, which was fabulous as always and then to IKEA where my husband scaled the shelving for a dresser and nearly got kicked out or arrested. I was thankful we made it out with our things. It was definitely an adventure to remember.

 

Yesterday the first thing I did was get my doctor to make and Ultrasound appointment. I didn’t eat or drink so lucky for me, I was in by 10:30AM. It wasn’t my normal girl, but she was just as cool. We looked at everything and it looked like everything is “normal” except for my kidney. She said it looked like there was some nephrosis going on but didn’t look at any lymph nodes. That wasn’t in the order. I’m absolutely concerned as this is exactly how everything started back in September. Today I woke up with mega pain in my lower back as well which made things a little more concerning and because we were running out, I didn’t get my hot salt bath. I can feel it in my groin and pelvis, a lovely burning sensation. I guess until she calls, I’m just going to suck it up! We are on our way to Universal and I plan to walk my brains out and enjoy every minute! I packed up some pain meds if things get worse, but praying this leaves very soon and its just an irritated bowel with some pissy lymph nodes.

 

What a battle. We are either fighting for life in the meninges, or fighting for life in my stomach. It is becoming tiring. Every time I feel like we are somewhere, we once again get knocked down. I have to do everything I can to stay positive but finding it very difficult this morning not to worry. “Do not worry about anything, but by thanksgiving, prayer and petition make your requests to God and the peace of God which transcends understanding will guard your hearts and your minds in Christ Jesus.” I have been giving thanks all morning as my combat. 

 

I’ll start a Universal Blog Post when we get there so I can keep our Hope supporters up to date on another amazing trip to make memories!! This Friday is our 16^thanniversary and we hope to be able to go to Magic Kingdom for the day as Peter Pans flight is where Skip proposed to me over 17 years ago. Magical! I cannot wait!

I Poop Rainbows

It has been a roller coaster of ailments and okay-ness the last two days. Wheeeee! Monday I met with Dr. Dunbar and the plan is currently to attack the LM with one more dose of Depocyte before doing a MRI. She feels like we should wait as long as we can so that we can “celebrate!” Her words. That is hope-giving for certain. She also gave me tips, meds and wisdom for the at that pint, four days of intestinal stopping, which didn’t do anything. I began having more and more pain, the steroids I was on was hindering all sleep at this point and Monday night I found myself at 5:00AM hysterically laughing so loud I thought I may wake kids, over something that came into my mind. All I could think was there was so much poo, that it was making it’s own organ between my spleen and liver. I was falling off the bed, with a belly rolling laugh I could not control. And then it just continued. There was no pause and poor Skip now had two nights of crap sleep because of me. Wahoo! The night before around 5 also, I took a Xanax and Tylenol, threw ear plugs in and woke back up at 10AM. Missed the girls going back on their “first day” but my awesome husband remained awesome and made it all happen. I did however get to see them off yesterday with my fabulous 1.5 hours of sleep and then I popped into the car for a visit with my PCP. I had laid with a heating pad on my stomach, I was in pain, and over this in a BIG way. More drugs, 2 Fleets later, and we had some reaction. I’m still bloated, but to everyones knowledge, there doesn’t seem to be an blockages. Thank God. I was feeling a lot like I did at the original diagnosis. Yesterday happened to be my diagnosiversary also. I was diagnosed 9/9/15 with stage 4, and 10/9 with LM. Big day and all I wanted was a pile of poo! Lol. It was definitely worth celebrating and pretty cool to look back and see how much we’ve done in just 5 little months. It feels like FOREVER!

I treated myself with a massage, direct orders by my neurooncologist, but I think it actually hurt me more than helped. I was SUPER relaxed, no sleep, coming off steroids, my body was pissed. It felt amazing and I was almost too relaxed when over and today, I’m hurting and totally "off". Last night I got an Ambien from the doctor and let me tell you, I PASSED out. I slept 7 hours, then like 3 more and this morning, I could barely get up to go to my next appointment. Which normally I would've been all over sleeping forever, but I hurt and nothing seems quite right STILL. Around 5 AM (I see a theme!) my head felt like it was going through a meat grinder. It hurt from the base to the port, and I felt like crap. Down to grab whatever I could and back to bed. Thankfully, I went back to sleep fairly quickly. I’m still a bit off today and have talked to the doctor, but she didn’t see a cause for concern at the moment.

I did however have a BIG appointment today, Genetics. It came back that I absolutely do NOT have Cowdens Syndrome like previously thought for so many years. I DO however have BRCA2 AND, yes AND, ATM Gene mutation. Apparently its super rare to have 2 mutations… haha. Made me laugh. The biggest reason in doing this was to make our kids aware of what they are at risk of. Fifty percent chance of having these mutations as well, but wouldn’t be tested until adulthood (18 and older) Early testing and screening becomes available regardless because of this now as well, which is great. There are already things I’m reading about PARP inhbitors and other possibilities that are available because of what we now now. I’m still a little in shock – I really don’t want my kids to have to experience anything I have and hopefully by the time they have to care, there is a cure.

Weekly Monday News

Hi there. Just woke up from a rotten night sleep. 5AM to 10AM. 

TMI factor approaching. No bowel happiness since last Thursday's dose. All seems to be hanging out in my small intestines. So not cool. 

My head decided to go into full pain mode in the middle of night. Finally Tylenol and Xnanax knocked me out long enough but still woke up with the beast. My hot bath didn't work nor my Frankinsence. 

Meeting up with Dr Dunbar as a follow up at noon. I've given my team completely to God so pray today they are being led by Gods wisdom, word and hands. We need our medical team to be guided by the Spirit. 

I've been slowly felt to go take a follow up visit to MDA so please pray for timing. 

Kids went back to school and I slept through it. Breaks my heart. 

All along. The first thing I'm grateful for is another day. Off I go!!! :) xoxo

Another Dose of Depocyte

It’s been a few days since I’ve blogged, so I just updated our DC trip and finally have a quiet moment to catch everyone up on things. Thursday was my second intrathecal dose of Depocyte and though we premedicated, I sat there while she was administering the drug saying to myself “uh-oh.” I felt the warm rush through my tows and back up. It was coming and she wasn’t done!!! I just breathed and kept opening my eyes waiting to see if she was putting the spinal fluid back in yet. I knew if I started vomiting, the needle would rip out of my head. It took everything in me, everything was spinning and there it was. The same reaction as last time. I wanted to cry. We had to get me to the bathroom as it’s not a one ended kind of expulsion (sorry for the TMI). I was staring off and on at the tiles on the floor watching them move! I was tripping! It was insane and finally made it back to my chair where we would have a repeat of two weeks prior. Except I somehow didn’t feel like I needed the ambulance, just sleep. Pass out, vomit, pass out, vomit. Finally around 4:00 (same time as before) I was coming to. We got a wheel chair and to the car we went. The brightness was too bright but I felt okay. I was not feeling like I needed to sleep, just my stomach was needing to eat itself. We stopped at Starbucks for my traditional pre or post caffeine, but it tasted disgusting with bitter vomit mouth. Oh well. I didn’t tell Skip until later the next day, but along the way something strange was happening. I kept thinking I wuld see something out of the corner of my eye, and I would turn and nothing. I realized there was a heaviness on my right side of my face and when I looked into my peripheral everything was melting!! I’m not sure if you’ve ever seen oils splashed with turpentine, but the colors literally melt away down the canvas into an actually beautiful swirl of colors. Think of the movie “What Dreams May Come.” That was what I saw! I shook it off several times and just closed my eyes. It soon passed and we were approaching Kroger. I wanted tomato soup and grilled cheese for dinner. Nothing else. I had made a grocery and weekly dinner list on the way home from DC and Skip was going to drop me off and go back. I knew that would not work and I thought walking may help me get back to some normalcy. It did. We shared a big buggy, he ran down the aisles as I pointed and in his arms we walked. It was actually really romantic and so sweet. We made it home, mom and Warren left for their home, and I sat upon the counter to fix our dinner. Yum, yum, yum, is all I have to say, until later that night when I had massive indigestion from the tomatos. Oh well, totally worth it. I’ll remember next time, just a plain girl cheese (that’s what I called it when I was little). Miraculously, I was feeling quite okay and the recovery this go around was easier. I went to bed early, slept terribly, but awoke Friday as normal. I was still having massive acid reflux, but at this point I was taking it. I took the girls, enrolled them back into school (Madison is ECSTATIC, Alana, I’m not sure yet), stopped by CVS, bank and library, and then off to “back to school shopping.” I knew good and well this was “too much” but whatever, like that has ever stopped me before. And walking as we know, keeps the spinal fluid flowing. So we hit all of our favorite stores, scored some incredible deals, and had a total blast doing it! Spent some Christmas money and gift cards, and ate Annie’s Pretzels, our favorite and made our way back home. I’m so glad I got to spend another back to school shopping with my girls. Meant the world to me. I can’t wait to go back next week, as I’m totally going Christmas shopping next! Saw some cool things for some cool people!!

We all decided movie night was in order, so after making killer chinese for dinner, we all cuddled and finished our Jurassic series! Jurassic World! I love these times with my sweets and look forward to many more. As usual, Alana said her prayers with us and moved me to sickness. I know God hears her and all I can say is “Lord, hear her prayers.” She repeatedly asks for nothing else, just my mom to be healed. I know you can, etc. I live for the prayers and at the same time, I cry at her prayers. They are truly innocent and real. I ordered the children’s circle maker book today and hope to try to deepen their prayers and make their circles. Something different as we go into this new season. I did hear spring is just around the corner, and I take that as a sign of rebirth, beauty and growth. It’s one of my favorite seasons, and I have faith God is going to do big, beautiful, good things this season.

Today I had to climb out of bed, as my head was hurting all night. Across my face must be where the bulk of the inflammation and disease was fighting. I used my Frankinsense as much as I could, even putting it upon my brows, but I knew it was time to get up. Realizing my stomach has not been quite the same since the dose, I’ve also resorted to #prayforpoo because my intestines have ceased to work since which scares me a little. I know renal failure is a common sign of LM and would love to just not go there. Ordered a massive amount of Starbucks this morning that a sweet friend went and picked up and living off fluids today. Took my hot bath as well and meditated with the Lord from sun up through the morning. It’s been a beautifully quiet day, even among the pain that comes and goes, I know my God is with me and comforting me. Healing me and helping me.

Early this morning I read about change, and have been trying to let go of some doctor stress and it really hit home. “As the winds of change start to blow in your life, may you lean in and listen for the voice of the Lord. Instead of looking for signs, and mistakingly drawing the wrong conclusion, may you instead look to the Lord and His strength.” I’ve had a nudge over the last few days to head back out to MD Anderson, so that is something I’m waiting on the Lord to confirm. I have a doctor appointment with Dr. Dunbar Monday at noon, that I’ve also given over to the Lord giving me much peace. So this morning as I read that, and the corresponding Psalm in 19, I found myself reading on over to Psalm 23 where I just found myself once again reciting it and reading it over and over. I finally looked down at the notes, and was gracious for His word again.

“Death casts a frightening shadow over us because we are entirely helpless in its presence. We can struggle with other enemies – pain, suffering, disease, injury – but strength and courage cannot overcome death. It has the final word. (I LOVED how it referred to my enemy as the disease)   Only one person can walk with us through deaths dark valley and bring us safely to the other side – the God of life, our shepherd. Because life is uncertain, we should follow this shepherd who offers us eternal comfort.”

It just spoke to me in a cool way today. I decided to just lean into God with all I had this morning and there was something he whispered in my heart. Guardians. You are all my guardians, here and in heaven, helping me and my family fight the enemy and he is giving us an amazing power that we would never be able to comprehend here and now. But it gave me extraordinary peace and a new perspective on this fight. I’m surrounded by guardians, by angels, by loved ones, going into battle by prayer, petition and non stop service to me. That I am grateful beyond measure for and thank God tremendously for your faithfulness. God bless you today and every day and don’t give up! We are fighting a good fight and I plan to show the world that miracles DO and STILL happen along with all of you.

We together, are undefeated, and ultimately undefeated in our Lord.

National Community Church, My Story to Pastor Mark

Dear Mark,

My name is Nadine Wall, and I was the one who ran down with my Alana to meet you at the end of the service. About four months ago I was diagnosed with stage 4 advanced breast cancer. I started chemo and within 12 weeks, my cancer was virtually gone. Forty percent of my liver was covered, I had it in my abdomen, spine, spleen, and brain. During that time we found out I also had it in my spinal fluid, giving me 3-4 months to live. In October, we started a chemo that would be given intrathecally by port directly into my brain. It worked for 6 weeks and the tumors were gone!! The next 6 weeks, the cancer resisited and January 4, we found out now instead of two tumors, we had around 12-15 lining the meninges of the brain. We were devastated and began our hunt for doctors around the country. We have settled in on a few other possibilities of treatment and keep hope and faith daily.

Our trip to Washington DC was something me and my older daughter always talked about doing. So when the weather finally seemed to work, we went for it. We had an amazing time! I had done the circle maker study during my first bout of cancer in 2013, and remembered your church being here, and I really was excited to visit. When I began searching, I couldn’t find it and a friend called later saying I should go! So I go ton facebook, found community church, and had a chat with someone on the messanger. I’ve had to watch a TON of streamed services and really wanted live and they gave us two options. The 10:30 at Lincoln Theatre stuck out to me so we could get breakfast and take our time. The volunteer were amazing and the facility was beautiful. I was in awe from the moment I stepped in.

We sat up in the balcony and as the music began to play I realized that was the song played when I was saved around 20 years ago. I couldn’t stop smiling. The next song started with “standing on this mountain top…” and the tears began flowing. When I was diagnosed Skip and I said we would climb the highest mountain and scream praise to God if he would just have mercy and heal me. This Christmas, we screamed it from the top of Fort Mountain in Atlanta, and have on many mountains since. I cannot put my worship experience into words, but I have heard those songs many times and have never felt the presence of the Lord like I did last Sunday. It was overwhelmning.

Then I heard pastor Dave say that you were preaching and almost fell out of my chair. Are you kidding!? What a treat. Of all the service times, all the places, and all that I know a pastor does, I could not believe you were going to be there.

I thoroughly enjoyed your word on “Dream within a Dream” and the stories of your family traditions and the words from the movie Inception. My husband and I dream all the time, especially now, since our new normal has arrived. We do everything differently, live differently, hope more and trust God more than ever before. One of our dreams in on a second property we own in Ellijay. We obtained it as a foreclosure five years ago and have slowly, like turtle slow, renovated most of it to be a place of sanctuary and something we could share with family and friends. It sits upon gorgeous 12 acres and the kids love free hiking it and fishing in the pond. It’s a magical place. Since I was diagnosed, we had a dream of it being the Hills of Hope where we could put 2 or 3 mini cabins throughout the property for people with cancer to be able to camp with their family for the weekend. I’m sure we would have friends and family use as well, but I would love to just meet someone and offer it as a place to find hope. All my life, being in nature always put all distractions aside and I would feel so close to God. He would give me mini sermons about mountain biking and the trails that I knew without a doubt were his words, never mine. I don’t think like that.

I just wanted to share my story and my dream with you. On the way home to Atlanta I signed up for a couples group and burst out with a laugh when I saw what book it was. Grave Robber, by Mark Batterson. Of course it was! I mentioned before I did the Circle Maker with some amazing ladies and I will be honest I hated it. It took me two years to get over the answers that came to light, but in the end, they were answers I personally needed and grew from.

In August, I decided I should do Circle Maker again but was quickly rediagnosed and was unable to attend. I feel like that it is okay now, and look forward to seeing what God has planned for me, my husband and family. I’ll never forget him saying the first week I was in the hospital, “I’ve prayed more in the last 5 days than I have in 5 years.” I could tell you story upon story of people sharing their come-back-to-the-Lord stories, but it would take a while. It’s been so humbling to watch and hear as that was never my plan. I jut write. I write from the heart and hope that through my suffering, my journey, others are encouraged and come to trust and know God like I do. There are miracles all around us every day just so many are missed with the grind of life.

Just wanted to say thank you for the hug and I hope you don’t mind being a part of team Nadine. All of National Community Church! We have prayer warriors around the world hoping to see a true miracle. I’m not supposed to survive this, it’s terminal, but something I’ve learned to accept that gives me great peace is that we are ALL terminal, I just get to live life a little differently, and compared to the rest of my life, its awesome.

Much hugs and prayers, thank you for all you do. Can’t wait to catch your online services. Best service I’ve ever experienced.

Blessing to you all.

Nadine Wall

So Became The Crazy Lady

This week has been kind of a blur so I’m going to start with yesterday. WHAT a day! I woke up feeling stressed. The day prior I had requested a chat with Dr. Dunbar and finally that evening emailed my laundry list of concerns and questions. I was pretty sure she and Dr. May were not communicating as I would like, that this team was failing me, and that we were completely unloved.

She finally called me yesterday around noon on the way to Walmart. I pulled over to talk. I ended up in heaps of tears, massive anxiety as she was NOT happy with me nor appreciated my concerns that no one had touched base after Thursday’s incidences. Which I still stand by even with what I am about to write.

We did get off the phone with the plan that she would discuss and come up with a way to not have a repeat of Thursday and that Team-May-Dunbar were fighting for me and loved me. I don’t think I liked her very much getting off the phone or felt like it was honest, because I still had zero peace. I walked into Walmart in a fog and felt like I may pass out at any moment. My head was spinning and told the girls I felt like I was being flushed down the toilet. (Then a dirty old dump truck was in front of us, making this farting sound, and Alana was sure it was pooping on me while I held on for dear life. Gee whiz, at least it made us all laugh)

I went home and began talking to Skip. I ended up making 6 quesadillas and by the end I was throwing butter in the pan and he came up and I slammed the knife down. I was broken. I didn’t know what to do. I didn’t know who I trusted anymore. I was completely lost. I did know however that my standards for a team of doctors could never compare to Team-Barber-Namnoum and that that was partly my problem. No one will ever be as near and as dear to me than those two doctors. (Well, Dr. Williams is pretty fantab as well. He makes the cut as well! Haha) But is all reality, the expectations that I have are mostly unattainable for any doctor to really achieve. Maybe.

Skip and I went to lay down. I knew if I stayed awake any longer I may experience my first panic attack or I was already having one, or it might even be a heart attack. I couldn’t swallow and he was about to throw up. I remember him saying something about praying. We were cuddled up. He said two words, and I said two more. He said another and I said another. I think they were wisdom. Confindence. Discernemnet. Hope. Peace. I really don’t remember and then I knocked out.

We woke up not too much later and the first thought that came to mind was the fact I had never really asked Dr. May if she was okay with this team. I basically threw them together. And so my message was left on the nurse line for Dr. May to call me back.

I decided I needed Kombucha for the trip I was completely not in any way ready for and some junk food, along with my daily dose of Starbucks. After about 10 minutes,  Dr. May’s nurse called. She ranks as one of my all time favorite nurses. We started talking as she wanted a better idea of WHY actually I needed to talk to Dr. May. We after a while came up with the question of “Is she okay communicating with Dr. Dunbar. Is she good with this team.” But before that, I explained ALL my frustrations, tears, concerns and issues to which her response was, “Nadine, you’re on a LOT of Prednisone. A LOT.” Oh. Apparently, this is why I am losing my mind, uncertain about everything, freaking out basically about every one and everything they are doing and planning. The doctors WERE talking and WERE praying for me and WERE thinking about me and DO LOVE ME. Huh. This was new news for me. I have never had a Prednisone issue that I can remember. But it explained everything and honestly, she made me feel sooooooo much better. I got off the phone with her and finished shopping. I felt a little bit of that anxiety chipped away.

We got home and I got my next call from Dr. May who I swear within seconds was laughing at me. She told me a story of her husband who got crazy paranoid when he was on them. It was all starting to come together. She said the exact same things Carmen did and I felt more of that anxiety chip away. Then she told me about how though she didn’t know how Dr. Dunbar was with her patients that as a collegue she really liked her. That she was great communication wise and very on top of things.

Sulk. I suck. They are communicating. I hate you Prednisone! You are an evil drug with mean powers to make me think that everyone was against me. Too bad I’m going to have to be on super high doses again, but this time I’ll be sure to make ZERO decisions about my healthcare during that time. Now, I’m ready to go on our trip. I feel WAY better.

I made reservations for the hotel and so my packing fiasco started. It went well until someone made me annoyed and then I was pissed that I do everything. Prednisone people. It wasn’t that bad and I got this AMAZING thank you from Skip for always being so on it about our trips. I’d say I’m a little over the top in planning and cleaning, but no one ever had to do anything, and really, I liked it. I think it’s fun.

I crashed out that night as soon as my head hit the pillow and for the first time in over a week, I only woke up once. At 6:30 I was ready to jump up and go! How exciting we are going on a trip! But instead I lay there, enjoying talking and decided, it didn’t matter what time we got there, no stress was allowed.

We finally left around 9 AM. All were happy except for Jax baby. He was very very sad. We have the dog keeper set, our house keeper set and off we went. We decided since I felt so awesome with no headache that I would drive first. It was a little weird at first and my eyes seemed to do weird things, but no headache. Then somewhere in TN, my phone rings. It’s Dr. Rudnick. Oh my, I totally forgot!! He starts talking and I pull off at the next exit so I can talk without distraction.

He had reviewed my scans and asked about our current plan which he liked! Great1 Then he asked what else were we doing. Well, nothing. That is when he began telling me about this immunotherapy drug that his team is having good results with. I had heard about it but it is only apporived for Melanoma and Lung. Apparently they’ve been using it for others to and he talked a little about how it would work with insurance and compassionate something support. That I’m different and that my in my case this could be really good for me. That this would be done along side Depocyt, as at some point it WILL stop working. Holy smokes. This is AWESOME. He asked me to do my research on it, but basically, that is what he would do. Oh, and that there was no need for me to fly all the way to LA that I needed to spend time with my family and that we would just touch base as needed. I hung up about to scream! I LOVED HIM! How exciting. How blessed. Thank you God for amazing doctors.

We did a little research and put calls into Team-May-Dunbar. They can absorb it and add it to their list of stratedgies. I didn’t even ask for a return call, I just want them to talk about it and we can figure it out next week. At this point, I am willing to do pretty much anything. I’m still asymptomatic and still have every hope of getting our rare miracle.

What a gift. Amazing doctors and teams of people fighting for us all over the country. IT’s like a dream come true. I can put my hands up, and let them work, and I can just pray for them all as they do what they know best to help make this miracle become a reality.

The funniest thing I heard during the entire ordeal was bat-shit-crazy and it has me rolling. That is what happened to me! I became an insane lunatic in the midst of an already hard, scary, scary time in our lives. It feels WAY better to feel so normal. Dr. Rudnick’s call finished the chipping and I’m back. Bring on DC and all the fun! I’m ready!