Oooops

So last night about an hour before landing I realized today was the 31st and not the 1st. So I'm NOT going to Emory today AND we had booked a hotel for last night so we wouldn't be driving back and forth. :( messed that up and no refunds. 

I did get an email stating they emailed the doctors here! I knew so because I have already had a call from Emory with a B12 shot added tomorrow and my Alimta being added to the Carbo last week. I'm super off today, just seems to be daily getting worse. I'd say lets get this bad boy going but you have to be on a shot of folic and steady B12 and Folic Acid for a week. Which I do, so not sure if that counts. 

I don't think my spine looked awesome because they have now recommended a bone building drug and I guess we will discuss that tomorrow. Seems like a lot progressed in the time I felt most amazing. Doesn't really makes sense and is really quite annoying but to get Opdivo I have to show progress. 

So here is to the next 8 weeks and showing mega killing of the cancer!

San Fran to Santa Monica!

Last night after getting settled, skip and I decided to grab a bite even though Atlanta time was nearing midnight. The first pub had a wait and a million people and the second no wait, but a million people! Thankfully we got this little corner spot and had a light dinner. We crashed at the hotel. 

Morning came at 4:45AM for me, 7:45 ET and I decided I could soak while skip slept. I took the biggest bubble bath ever laughing as only my head was poking out. The girls and I were JUST talking about this of when they were younger! I giggled the entire time, remembering when I was little and loving bubble baths. 

Skip got up and I snuck out to surprise him with Starbucks! (There is one in the hotel!!) We obviously got a crazy early start and found a close by breakfast joint. It opened at 7 and at 7:23 when we arrived there was a wait. By the time we sat down the line was down the block. The only time I've ever seen that was at Breakfast Club on Tybee. Well it was worth it, Hollywood cafe. Can I just say the fruit bowl was every fruit you can name off the top of your head, and probably enough for 4 people. We ordered breakfast too so it goes without saying "we were stuffed!!" 

We hopped back in the car and decided to take the top down! Yes, we got a convertible as the next day we planned to drive to Santa Monica via 1 and thought it would be a blast! We decided we HAD to drive to the top of Lombard St and drive down it, except it was so much fun we did it again! Ear to ear smiles laughing at the ridiculous hills, crazy ups and scary descents! 

We parked at Fishermans Wharf and walked around for a while. Noticed people swimming without wetsuits!!! It was insane and I know that water had to be cold! 

Next we found the trolley start. All I ever wanted was to ride to the top and back down! Best $14 we ever spent! Can check that off my list now! Lol. "Went on a real trolley ride!" CHECK!!! 

After the trolley we went back to hotel to chill for a while before heading to Benicia to see my pink little chemo sister! We stopped at a Trader Joes along the way and I'm sure we bought half the store so we could bring lunch so she didn't have to lift a finger!

We stopped at a little park on the way over, and over several FUN bridges may I add! We ran a special request for apple pie and finally made it. 

Oh we hugged and hugged and we all introduced each other and the writing and charades began! I wasn't sure how well we would be able to communicate but It was never a problem!!! I brought her a Boogie Board which she was totally fascinated by and we wrote away. I'm completely obsessed with her voice! It's awesome and her emotions are the best! I had such an awesome time and it was truly a blessing to meet her. Skip made this happen and i can't thank him enough. 

We travelled back so we would be able to go to a 6:00 service at the Grace Cathedral. It was a beautiful church in downtown and this service was held on the tiled replica of the old labyrinth that used to be there. I wasn't sure what to expect but was soon blown away. It was beautiful. I'm not sure I could put into words what we both experienced but we've talked about it every day since. Maybe for another blog post! 

We walked back, down the steep steep road, and picked the first pub that was packed the night before and got a little something to hold us over for the night. Funny thing, the first night was way better! I have realized I'm obsessed with mashed potatoes for whatever reason. Random, can't eat enough of them!

That night I may have totaled 3 hours of sleep. It was rough.  I woke up grumpy, sore, tired and we were leaving for Santa Monica! Coffee and granola bars it was and off we went. Once we got out of the city the views began to change and before we knew it we were driving through beautiful forests. We stopped at the first beach entry point we could find and to our surprise little sea otters were playing right there in this little pond! I even heard the little baby otter crying as it got too far out and the mama came and swooped it onto her belly! It was the sweetest!!!

Our next planned destination was in Big Sure and it was called Rocky Point Restaurant. Not only were the views stunning the food was phenomenal. After Skips fish tacos and my unreal seafood stew we went hiking to the cliffs. They had little paths around the property overlooking the awesome rocks and crashing waves. I had to hold on tight walking down and skip steadied me and made sure I didn't go over the edge. We sat at the top of this rock point and just stared off into the water for quite some time before leaving. The entire drive for the next two hours were twisty turny up down fast slow and most of all awesome. It was exactly what I dreamed it would be and more.

As we drove a little more I was about to look up where to see seals in California and to my surprise there is a sign that says seals viewing area in one mile. Shut up. That's so cool!! So we stopped and I couldn't stop laughing at these three elephant seals that looked like large dead fish. Finally one looks up, flips some sand on its back and plops his head back down. Farther down we see this giant beast of one, though I'm convinced it was a beached whale. Walking back the wind was so bad I could lean and not fall! So we drove to the popular viewin spot and oh. It was nasty. It smelled bad. A huge one was molting and skip says something about molting skin flying into your mouth. I'm done. Yay seals! 

We veered away from the coast for a little while to make up some time and I decided to try to drive a while as I had never driven a convertible!! "Convertible!" Check! It was fun and gave skip a break, but it soon ended. 

We ended up going through San Luis Obisco, Santa Barbara and then Malibu which was surprisingly was not as far from Santa Monica as I thought! We stopped near sunset at just the right time! The view was awesome the waves were crashing and of course I got my pants wet! Totally worth the spinning in the water, hands raised, so blown away at the gifts we had been blessed with the last two days. I was overjoyed. We stood and watched it completely disappear, in each other's arms with tears in my eyes. 

By the time we hit Malibu it was dark and you could see into these mansions on the mountainside. We just kept pointing out and oooooing about how big and amazing they were. 

We finally made it to the hotel dreaming about our tuna tacos at our favorite restaurant. So we quickly checked in, went and relaxed, ate and went back to the room. I was asleep as my head hit the pillow and was convinced I sleep walked even back from the restaurant. I finally slept with only one wake up and when I open my eyes this morning I saw daylight and smiled. I slept alleluia!!

We quickly pulled our belongings together, grabbed a bagel sandwich to go and made it to the MRI just in time. It was long but I'm glad we split up the brain and spine this time. That's such a long series. Two and a half hours later I went over to Dr Ks to check in and the radiology calls and says I need to come back one image isn't clear. Really!? It's only around the block but we have to drive. Only me!!

They weren't ready so we popped over to whole foods, grabbed a salad and some snacks and finished up my MRI. Went and saw Dr K and Minh. I saw her first and boy did we giggle. I love her! I told her about my Emory issues and laughed and then got into the more serious stuff. I showed her all of my symptoms and we talked about how the clear CSF and then the horrible scan could've happened. She said she didn't know and Dr Kesari said labs aren't always accurate. I guess that's why I'm LM if you've had two negative spinal taps, you have to get that third one! I can't imagine it grew in 2 weeks but I guess we are describing me, so anything is possible!

We talked about treatment options. We wants to try to get this back under control with high dose Alimta again plus Carbo every 4 weeks. Then if things look good we will introduce Opdivo. Had I known he wanted me in good shape for the Opdivo I would've done it last time. Oh well. We will have the opportunity again. I can't doubt that. He also mentioned IT Methotrexate but sounded like he wanted to see the spine results first and they weren't ready yet. He plans to speak with my doctor at Emory, then tomorrow at 9:45 I will meet with her and go over everything again to make sure we are ALL on the same page and I'll start the new dosing on Thursday of the next week. 

Fortunately I'll be on rad steroids for my little Unicorn gathering but I'm accounting for this to not being easy. I may be wrong and it'll be a walk in the park, but I'm preparing this week for 2 doses of eh. 

I'm currently on the plane and it's almost empty so Skip and I have a seat between us and I'm all stretched out! Best plane ride yet! Must remember the 4:00 Tuesday flight!!! Woohoo!

I guess I'll post a follow up to this after we visit with Dr Gogineni tomorrow to verify that the plan I heard today is actually still the plan after they talk. Thanks for all the crazy support and all the sweet texts I've had over the last few days! It's been a crazy ride burp was I can say I'm blessed by as well. More than half of what we've done this past year would've likely never been done in my lifetime so for me, that's cool. 

Toodles until tomorrow!

Weekly Monday News

Can you believe it! I'm writing this on a Monday "for the first time in forever...!" I wanted to do a quick update!

SF CA is awesome sauce! Love it here!

Driving to Santa Monica all day today!

Tomorrow I have scans from 8:15-11:30ish. Then Dr at 1:15 to discuss the new plan of action. I have in my head what I think they will want to do, none of it is appealing, but I must trust and rely on God to show me the path. He hasn't failed me yet. So a huge prayer is that we make our flight tomorrow. When we added scans it pushed out the appointment time and the last flight out is 4:30 or 11:00. We've had it changed to 4:30 but that's going to be really hard. If we miss it we take the red eye and go from the airport to breakfast to Emory. 

I have another appointment at Emory with Dr Gogineni and trusting in those 24 hours the doctors agree on the best plan for me. 

Thank you for the continued prayers! Fun details of SF coming soon :) xo

Saturday and San Fransisco!

On my way to Cali after dropping sweet Alana off and heading to Allatoona for Madisons first 8th grade game! Half way there we realized we left the CD of my scan at home and took a couple of awesome people to get it to me in Kennesaw! Lifesavers! Then we get to the game and all is well until Madison is pulled to the side. Low sugar, dehydration and a HOT day made for some shakes and blurred vision. Skip and I had to leave at 1:45 and leaving Madison with my mom kinda sorta freaked me out. On the way out I saw my dad walking back. He went into super dad mode when I asked him to convince her she needed to go. She is all kinds of stubborn and will push through just like me. I was told she is doing a lot better and they left after the half time routine. Wish I could've been there for it! We are about to take off for San Fransisco where we will stay 2 nights and explore another part of Cali before doing an all day appt on Tuesday!! Back in touch 4 hours from now!

Keep Pushing Through the Noise

Lsat night after Skip worked we through the CD’s in to make our own readaing. I think we both instantly knew what we were looking at. A big sad puppies face! Aw, it looked so cute! Okay, no no, it was my brain and there lie several tiny circle-spots, all in the meninges of the brain. I’ve seen a lot but I’ve never seen it from this angle. Wow. How is it that I have beautiful spinal fluid, yet I now have at least thirty something tumors bathing in it? I’m sure I will get the answer this weekend, but I have heard the doctors ARE communicating. I shouldn’t make assumptions, but I am. I’m guessing they will start Opdivo immediately, wait a couple of weeks and start IT depo/methx. Basically Methotrexate and the hell drug Depocyte into my brain. Every part of me shouts OH HELL NO but I know that means 4-6 weeks. So like I said, I should not speculate whats being discussed. I do know a trial is being tested that I qualify for but I want to do Dr. Kesari’s trial much much more. The also cancelled all my appointments at Emory until my spinal MRI proves to have no progression of disease, but they are trying to get me in to the hospital to run it in California. That would be a GIFT.

So anyway, I really had no feelings about this. It’s like you just heard “It makes no sense, your LM is still there,” though I’m sure it’s been there since June because I looked back and saw it. Is it worse since then? Yes. Mildly. I gave up worrying my tail off about what if the worst happens, and I just put my head forward and I’m aiming my unicorn horn to win! Do you want to know how I dealth with it, “who wants to go play putt putt!?” The cheers of my 8 year old were too loud and my eldest was rolling her eyes until she actually got there – then it was a cool memory! I mean WHO plays putt putt on a school night at 7:30!

Skip then dropped me off to pray with some friends for sweet Amy. She will have her 7^th reconstruction surgery tomorrow from breast cancer, but shes that quiet soul in the background working hard to make sure everyone else is taken care of, so you would never know. Please pray this one takes and that she has a speedy recovery! They’ve been an awesome blessing to all the cancer folk in this hood, let’s bless her back.

This morning I woke up and it was tired, hungry and wobbly so I climbed back in bed after whatever I ate. But then I thought, “This is stupid. I should be able to row a kayak. My back is feeling a ton better, and this could go really bad or really good.” See Traci and I had planned a little lake time and I had cancelled on her and we decided Starbucks. “Starbucks, no.” So we made it work, skip helped me on and around the lake we went, nice and slow. On a side note, the water was DISGUSTING and I did my best to NOT get it on me. It was peaceful otherwise, shady in some spots with a nice breeze. We got to talk a lot and do more catching up. I love my Traci time.

Then I went up to a friends house where we talked about who we were and did a little more catching up, rocking on her front porch. It was a good time, so beautiful and needed for both. It always amazes me how everyone’s love languages are so different, so many of my friends don’t even know mine, but thankfully that was something my husband and I figured out early on.  It says somewhere in there, if he or she does a language to you over and over, you can pretty much guarantee which one they have as we typically show love the was we tend to receive it. Just random information, lol.

Now I lay in bed thinking I should nap but don’t really want to. I have a million things swirling around in my head about what I want to do before Christmas along with planning my diagnosiversary! Maybe I will take a nap! And then I’ll make new goals! What can I fit into a whole another YEAR!!!??? Zzzzzz.

Weekly Tuesday News

Apparently, I cant remember to post Monday, so now I'll call it Tuesday! The last two days have proved to be harder than the recent weeks. I woke up yesterday with debilitating vertigo. I was running into walls, nearly falling when I stood and was horribly tired.  Today is a little better, but eager to see what in the world is causing this! I had an MRI early this morning that my good mama got up super early to take me down. We had a really fun day actually and we accomplished a lot afterward. Including Flying Biscuit! You know you love those dreamy creamy grits! I came home and napped for a while, played some games, made some dinner and into bed we go. I’m starting to realize we will be in San Francisco in less than 4 days and realizing I have 9 days from when I get back to launch a Unicorn Rainbow Diagnosiversary Party! Deep breath, and sweet dreams!

Prayers for the Week:

Vertigo to resolve

Clear MRI

Tuesday appointment in Cali

Sept. 1 Emory visit and infusion

I need prayers that my doctors will be on the same page, they will communicate and work together, taking into consideration quality of life.

Thank you.

Blankets Creek

After my blog entry yesterday, I did exactly what I said and went mountain biking with my mom. I didn’t realize how bad my vertigo was, or whatever it is, until I started down the paths. Bump, bump, bump oh wow I can’t see. It was like shaking some eggs up for a scramble but in my head! I laughed and just kept riding. What a sketchy adventure THAT was!! Thankfully I could probably ride that trail with my eyes closed. Five miles of pure determination and mega fun.

My mom rode off and I walked back into the woods for my me and God time. I sat in the nearly dried up creek bed just smiling at the beauty, listening to all of God’ creation and instantly, all my stress went away. I was smiling. The air felt good and I sat on my sweatshirt praying and daydreaming.

I eventually studies the rocks and noticed this clod by my feet. It was a bunch of ricks kind of meshed together in almost a baseball size and looked like a ball of Jurassic poo. I moved it a little with my foot, hard. It was the only one like it in this bed of a million rocks. I rolled it and moved it with my feet and then AHHHHHH! SPIDER!! Giant spider and nasty looking peering at my from the shadows.

I sat there and studied it and I realized something cool. It was a symbol of my LM family. We have come together by this “crap” disease and have been meshed together like the rocks were. We didn’t choose to be in this ball, but we were chosen for whatever reason. Then, when we least expect it the enemy is lurking in the shadows, until, AH, we see him trying to bring us down, hurt our positive attitudes, whatever he had been trying to do. And when we see it, we can know that we are all stuck together and will help the other rock be strong in our clod roll around and shake him off. I don’t know if it makes sense, but it just reminded me of this small family of people who I’m truly blessed to have in my life.

When I got up to leave, another eek and just at the edge of my sweatshirt is maybe a 5” long bug looking worm thing. It was hiding in my shadow and it just gives me chills. Bye nature, I’ve now had enough of you!

I seriously have no idea what I did after the ride or when Alana got home, but whatever it was ended in an email that said my CSF was still clear! I took a deep breath and smiled. My miracle is 5 weeks strong. It’s hard to grasp really, it’s so beyond my understanding and at the same time, I love that. I don’t need to understand it all or question how or why. It’s a gift and a direct reflection of the love and prayer that has gone up for healing. Can’t thank you enough.

Love me a Good Shawn Mendes Song

“Sometimes, it all gets a little too much, but you have to realize soon the fog will clear up…” one of my favorite songs of my buddy Shawn Mendes. Today was that day. It’s been building and building, sinking and falling under the stresses of life. My doctors don’t have it together, stress. Car problems, trying to sell RV, getting a new roof, and pool estimates, stress. We were having problems at school, stress. Little one was sick and I have low counts, stress. To-do list grows, stress. Wanting to love on everyone I can, stress. I haven’t even sent invitations for my 9/9 celebration, stress. Overall the results, vertigo and back pain has me in the back of my mind ultimately stressed that LM is taking over. I can’t think like I used to, literally having no idea what we are talking about in the middle of a conversation. Forgetting 50 times a day where I am and what I’m doing. Stress. I can’t blog because if I have an awesome moment, and don’t document it right then and there, I can’t remember any of the details anymore. It sucks. It’s a sickness to your body and soul and it’s plagued me for a good week now. The best part of my week has been talking to people like me, and sharing what no one else could ever understand. That is healing for both parties.

Today I realized how insensitive I’ve been to my family, friends and strangers alike. Old normal was creeping in and I despise old normal. New normal is where I am and has no place for anger, frustration, stress, or drama. It was rubbing off all the colors of my little rainbow but yet God allows the love to continually pour in. I had 4 or 5 texts just last night and then again this morning, of awesome women somehow knowing I was in over my head and just messaged or called to let me know its all going to be okay, some reminding me how fragile this life really is. I cannot stop crying as I think that is how I process the let go and removal of it all, and of course a little mountain biking. (Probably not the smartest thing with my back jacked, but its likely better than destroying my watering can with a baseball bat.) I was going for the hot tub and Skip wouldn’t let me. Can someone PLEASE help us get a trailer and rid of it?

All that said, taking a deep breath, making a new list, and tackling what is closest to date, and allowing the future to take care of itself. I don’t let my mind go there, why am I planning there?!? I know better but I just can’t help myself. My daughter’s Harry Potter birthday in November is completely planned, favors are done, and it’s all because “what if I wasn’t there and I promised her a HP party?” Skip has to do it? Then poor Skip never got his 39^th birthday bash since I was so sick, so I’ve been planning a 40^th since February hoping I wouldn’t miss it. So I’m going back to the 39^th birthday bash, it’s not a 40^th, and it will be well before he turns 40 as December is just a hard time of year.

OK. Mom is going to the trails with me, a holy God loving place and I plan to just sit by the water and soak in all his grace love and forgiveness and pleading for so many as my woes don’t even come close to other’s heartbreak I know. I just want them to be encouraged, know they are so loved, and inspired, and understand, it’s okay to smash a watering can and scream every once in a while because the reality is, sometimes, it really is all a little too much.

God bless.