Monday, November 6, 2017

Long Time Coming...

I haven't written in a really long time. This summer has gone by in a flash, and to be honest it hasn't been the easiest. 

Medically things are going well. I'm in partial remission. I had a scan on October 13th, and the results were mostly good - most things stable, a few places smaller and less uptake - but one or two spots that are either larger or have more uptake. With immunotherapy this can be an ok result. Many times inflammation is the first step of the immune system attacking that spot. For now, that is what we are calling it (there are some other factors that let us think this is the more probable case). However, it has also led me to think about ways that I can facilitate this actually being and STAYING the case. 

So I went back to Tong Ren last week - after an almost whole summer long hiatus due to MassChallenge - and it was so amazing. I will be making sure I get there at least once a week no matter what day or what I have going on. I need it. It helps me so much in so many ways. 

I feel I missed the entire summer - for yet another year in a row. At least this one is for a much more exciting reason. CareAline was accepted into the MassChallenge business accelerator in Boston this summer. We started at the end of June, and are just finishing up now. It has been an amazing experience. Not the least of which because it got me out of bed and moving toward something. But we have been offered so many opportunities to put in place things to grow CareAline and help even more people, so we are really looking forward to what comes next. And even more exciting is that we made it into one of the top 26 companies, and we were awarded the Gold Award and $50,000! This is going to be a huge help for us and especially for CareAline!. 

One thing that going through this program has reminded me of however, is that we are not normal. But more profoundly, that we will never be normal. It's so much harder for me to function in the normal world around me. I look like a normal person most days, but there are things that are definitely different for me than even the average entrepreneur. Things take a little (or a lot) longer to do; my schedule is dotted with days that I have doctors appointments and blood draws and chemo. I have to try and fit in rest in order to be able to function (but I usually don't). I can't remember things and the brain fog is extremely frustrating. It's hard to constantly need others to remind me of things I used to be able to remember at the drop of a hat. Sometimes I yell out because it takes that much effort to push information from my brain out of my mouth. But the biggest thing is that any little thing that pops up, I go straight to panic. A new bump? (It's growing.) An off blood test? (It's growing.) Lochlan wakes up with a swollen eyelid? (It's happening again.) *Lochlan is fine- his eye is better. He probably bumped it.* It will never leave our minds. It will forever be there. No matter what else is going on, our life will be derailed completely with even the smallest of things. And processing it, well, it's almost impossible. 

I blow up. A lot! Way more than I should, and definitely not in appropriate ways. I push down so much stuff through the day to day, and then something will happen - an egg will smash on the floor, the dog will trip me, the microwave won't work, the cookies won't shape (yup, I swore at cookies!) - and it's a total shit show. Screaming, yelling, crying, slamming doors, blaming other people, hating myself and my situation... the list goes on. It's just impossible to know when it's coming, and it's impossible to control at this point for me. For the most part, I avoid blowing up in public, but at home, it's inevitable. In public, I usually just have panic attacks. It often leads to me calling Mike, frantically needing help with something or to try and talk my mind down off the edge. He stops what he is doing and walks me through the steps to calm down, but it fractures the day. And if I have misplaced something, it's all over. Those are the worst. We will spend hours searching for things, frantically and unorganized, and if we don't find it, it derails the whole day, rather than just the few hours. 

So, I'm sure there is more to this post. But the exhaustion of todays unreasonable outburst is taking over (I can often fall asleep immediately after due to the endorphin release). I'm going to try and write more. Remind me. The memory issues are real. And reminders are always welcome. 

Wednesday, June 7, 2017

Trucking Along

I started this post a while ago. It's been hard for me to write recently. But I found a piece to add to it that really summed up perfectly why this post started over a month ago and ended with the word "But" halfway through a sentence that....

Things here have been moving along. Slowly but surely days pass, and things get done, or not done. I sort of have a schedule, but it's not at all glamorous. In fact, most days I feel pretty damn lost. 

I've found myself feeling pretty useless lately. Yah, I'm doing well, I'm moving well (discharged from PT ), I've gained back the weight (now I need to stop gaining 4lbs a week! - paleo here I come!), and I can do the laundry and play with Lochlan, but (this is where I had stopped...)

I'm still trucking along. There have been some amazing things happening for CareAline, but I can't devote nearly enough time to it - my brain fog is very big on this drug, and it definitely doesn't make focusing on anything easy, or even possible sometimes. We were accepted into the MassChallenge accelerator in Boston for this summer, so we are looking forward to really focusing in on growth and making CareAline a standard of care item. 

Lochlan has been doing well in his new school. He is a bit combative with us, but seems to be sweet with everyone else. I am going to be pushing harder over the summer (when he is not in school) to get started on Art Therapy (we all need to start going. we found a great place, now to make sure they figured out how to take massHealth). He has some camp lined up for the summer, and I'm hoping to find an energetic student to spend some time with him this summer while we have days that we need to be in Boston for the accelerator (if you know of anyone...).

My last scan showed partial remission. I was really hoping for no active disease (even though I knew that there were still some sizable nodes in there), but partial remission and everything still shrinking (my neck nodes are now all within the normal size range - with just one up taking PET dye!) is a move in the right direction. 

I've been falling into bad food habits. Saoirse's birthday came on me hard this year. For over a week I was in a terrible funk and the day of her birthday things fell to pieces. Sugar and chocolate have been my crutches. I'm trying to get back on the low carb focus. This week I'm basically eating bacon and eggs. So far so good. 

I'm cleaning out the house! I've been doing it for a while, but I'm making a big push right now. I've gotten my bedroom pretty well cleaned up (a few things left to go through on the dressers), and I actually cleared out the cooperage!! and have it almost usable as an office space! Lochlan's room has always been pretty good, but I have a few things to pull out and chuck from the crawl space in his room that will make a little extra storage space. The dining room is coming along - I finally hung my tile shelf that Mike made for me. I have about half of the tiles up, and we will make two or three more shelves for over the other windows in that room. I'm going to be getting rid of the indoor play kitchen and taking back that room as a dining room. Then I can FINALLY finish my awesome dining room table I'm building (seriously - you are all going to want one!). Then comes the office..... that room has been swallowed by paper and random shit for faaaaar too long. Its time to take it back and turn it into something more useful - namely a play room (yay for taking back the living room!) and a guest room when we need it. I feel like I've been swallowed by "things" and I want to take back our space and not have so much chaos around us. 

Then today I saw this in a Hodgkin's Facebook group I am in. I felt like it just really captured what it's like to be in this journey. I don't know the person who wrote it, but I think it's the best description I've seen about what it feels like to be the person with cancer. 

What's it like to go through cancer treatment? It's something like this: one day, you're minding your own business, you open the fridge to get some breakfast, and OH MY GOD THERE'S A MOUNTAIN LION IN YOUR FRIDGE.
Wait, what? How? Why is there a mountain lion in your fridge? NO TIME TO EXPLAIN. RUN! THE MOUNTAIN LION WILL KILL YOU! UNLESS YOU FIND SOMETHING EVEN MORE FEROCIOUS TO KILL IT FIRST!
So you take off running, and the mountain lion is right behind you. You know the only thing that can kill a mountain lion is a bear, and the only bear is on top of the mountain, so you better find that bear. You start running up the mountain in hopes of finding the bear. Your friends desperately want to help, but they are powerless against mountain lions, as mountain lions are godless killing machines. But they really want to help, so they're cheering you on and bringing you paper cups of water and orange slices as you run up the mountain and yelling at the mountain lion - "GET LOST, MOUNTAIN LION, NO ONE LIKES YOU" - and you really appreciate the support, but the mountain lion is still coming.
Also, for some reason, there's someone in the crowd who's yelling "that's not really a mountain lion, it's a puma" and another person yelling "I read that mountain lions are allergic to kale, have you tried rubbing kale on it?"
As you're running up the mountain, you see other people fleeing their own mountain lions. Some of the mountain lions seem comparatively wimpy - they're half grown and only have three legs or whatever, and you think to yourself - why couldn't I have gotten one of those mountain lions? But then you look over at the people who are fleeing mountain lions the size of a monster truck with huge prehistoric saber fangs, and you feel like an asshole for even thinking that - and besides, who in their right mind would want to fight a mountain lion, even a three-legged one?
Finally, the person closest to you, whose job it is to take care of you - maybe a parent or sibling or best friend or, spouse - comes barging out of the woods and jumps on the mountain lion, whaling on it and screaming "GODDAMMIT MOUNTAIN LION, STOP TRYING TO EAT MY WIFE," and the mountain lion punches your husband right in the face. Now your husband (or whatever) is rolling around on the ground clutching his nose, and he's bought you some time, but you still need to get to the top of the mountain.
Eventually you reach the top, finally, and the bear is there. Waiting. For both of you. You rush right up to the bear, and the bear rushes the mountain lion, but the bear has to go through you to get to the mountain lion, and in doing so, the bear TOTALLY KICKS YOUR ASS, but not before it also punches your husband in the face. And your husband is now staggering around with a black eye and bloody nose, and saying "can I get some help, I've been punched in the face by two apex predators and I think my nose is broken," and all you can say is "I'M KIND OF BUSY IN CASE YOU HADN'T NOTICED I'M FIGHTING A MOUNTAIN LION."
Then, IF YOU ARE LUCKY, the bear leaps on the mountain lion and they are locked in epic battle until finally the two of them roll off a cliff edge together, and the mountain lion is dead.
Maybe. You're not sure - it fell off the cliff, but mountain lions are crafty. It could come back at any moment.
And all your friends come running up to you and say "that was amazing! You're so brave, we're so proud of you! You didn't die! That must be a huge relief!"
Meanwhile, you blew out both your knees, you're having an asthma attack, you twisted your ankle, and also you have been mauled by a bear. And everyone says "boy, you must be excited to walk down the mountain!" And all you can think as you stagger to your feet is "fuck this mountain, I never wanted to climb it in the first place."
— Caitlin Feeley - the one, the only, the magnificent.
"Fuck this mountain."

I'll try to write more. It feels good. I have some stories and things that I need to put down on "paper" anyway. 

Limp means alive.

I wrote this post a while ago and hand't had the nerve to post it. As I've read it over a few times, I feel like I want to share it. Please don't take this as anything more than what goes on in the mind of me while I'm idly "trolling" Facebook trying to forget some of my negatives.

As I was giving tips to another mom one day about how to handle anesthesia with a toddler, it came to my mind about going back into the OR and holding Saoirse while they put her under (so I would be the last person to hold her awake). It then occurred to me something interesting that goes through your mind in that situation. They go completely limp and "lifeless" in your arms, and at the time, you feel like they are dead in your arms. 
But it's interesting what the reality is - limp and floppy means alive. I particularly remember holding Saoirse after she died. She was hard as a rock. Stiff very quickly after death, and very unreal feeling. It's strange how your perceptions change and how experience reminds you of the odd things you know as a parent of a dead child. 
For a second I thought about writing a note saying 
"She will go limp, and it will be strange, but remember - limp means alive - trust me, dead kids are definitely not limp." 
But I thought better of it. Not exactly a great put in for someone who's child is about to go through a procedure. 
So who DO you say things like that to? Those thoughts that would shock those that haven't gone through it, and scare them half to death in reality. Others who have been through it? And remind them of that pain? Or are they all like me - strangely satirical about their dead kid. It struck me that night that I didn't know who to say my strange "quip" to, so it stayed strangely in the air - searching for a compassionate ear to fall on, one that wouldn't think I was diving-off-the-deep-end crazy. 

Wednesday, February 8, 2017

....Just Keep Swimming

Sorry for the delay! 

The waiting was worth it - my LP was CLEAR! It has led to me kind of getting distracted with trying to get stuff done. Treatments are going well. My liver is not happy with this drug, so my doctor delayed my last treatment by a week to give my enzymes time to come down. I did have some spots on my liver, so it may be that they are breaking down and flushing out causing the rise in the enzymes. 

I've been steadily gaining weight, and I'm continuing with my PT which has been helping me to gain my strength back. My balance and mobility has made great bounds, and I only have issues the few days after treatment when my muscles like to spasm. I'm hoping to start back at dance and yoga soon. Slowly at first, but it will be so much more normal. 

I'm working on cleaning out our house currently. I feel as if we are being swallowed in things we don't use. So far it's going well- we have moved furniture around, given away some things, listed others for sale. I've pulled out about 15 big plastic bins of things to get rid of, and have more to go through in the house. I need to get the office into order, and get rid of some of the random stuff and outdated paperwork. My goal is to get it to the point that it can become Lachlan's playroom when Mike isn't working in there. I also need to get the junk in the cooperage cleaned out. If anyone has a need for a wooden queen bed, a couple of straight back dining chairs, a rocking chair, or two small photography enlargers, let me know! I promise my pricing is quite fair.... :) 

More to come soon. I'm hoping to take a little break with a friend soon. We both need it, and I think it will be nice to get away and have no agenda for a couple of days. 


Sunday, January 22, 2017

Waiting....

I hate waiting. Waiting for answers and waiting for more information. Waiting means patience and that is something I have no more of. No more days to waste, no more time to just sit, no more weekends to lay dazed and confused, no more weeks to let slide by. No more....waiting. But yet, here I am. In the patient holding pattern that is our life. Waiting for the next test result. 

I had an MRI done when we came home from Miami. I had been having balance issues and dizziness but no other explanations were completely clear (could have been a number of things) so I did the MRI. It was just of my brain so it wasn't so bad. A "short" hour long test and I was ready to go. I really didn't think much was going to come of it, but I got a call. Something showed up so my oncologist wanted me to go see a neurologist. He called about an hour later and wanted me to be there in an hour and a half - nuts, and at first I couldn't do it, but an appointment got canceled so I went. There was contrast uptake in my cranial nerves. He pulled up the images and searched for a little bit and then he found it - ever so faint uptake of dye in my cranial nerves. Everything else was normal (and pretty cool looking). He did the barrage of testing that comes with a neuro consult - look at my finger, touch your nose, walk on your toes, memorize these three words, etc. I passed with flying colors. I had had some facial muscle issues while we were in Miami - all of a sudden I dripped water out of one side of my mouth - but it had gone. And my balance was doing better since I started PT and my dizziness better now that I was moving more. We decided to do some digging before doing further testing. 

The weekend passed and I had found some interesting case studies that I thought would keep further testing at bay, but the neurologist decided it wasn't enough. I needed an LP to check my cerebral spinal fluid. Boo. My biggest annoyance? I HATE local anesthetic. With a major passion. In reality, that was my only hold up. I hate local - avoid it at all costs. So I went in on Friday - watched the new president give his speech while I signed paperwork and the doctors and nurses took my vitals (a great way to get a good blood pressure 😜), and then he did the lumbar puncture. It really wasn't bad - but I tensed everything up in fear of the hated local, so my back was sore for a couple days. Most of the testing will take about a week, he told me, but a few things will be back in a couple hours. I was hoping those things would be negative (not sure why I thought they would be), but he called me a few hours later. No bacteria - that's a good sign. But elevated lymphocytes and protein. This - of course - tells us something is happening, but gives us no conclusion of what. So now we wait. And wait. And wait. It's been like two days and I am already done waiting. It's going to be so much longer. Especially if they don't find anything - which will mean they will test things like a thousand times to be sure. There are two main possibilities - one, the Hodgkin's is in my brain; two, it's a side effect of the medication (akin to Guillian Barre syndrome). We are hoping for two, but that then puts me at an impasse for treatment. Although I'm having no symptoms so is it really that bad? I don't know enough about neurology to know. Just something else I have to read up on. 

I'm annoyed. I do enough research, and I have better things to be researching than this. Plus I have some cool new books I'd rather be reading (yes me!). So if anyone wants to dig around and figure out how bad uptake in my cranial nerves is, and then about if that has been seen with Nivolumab (or Brentuximab since I was on that before this, and let's throw in ABVD to boot since I have NEVER had my brain scanned so they would never have seen anything before, hell throw in high THC cannabis oil and acupuncture into that mix - might as well pull info on the lot of it!). Then just let me know if all this was even worth the dreaded WAITING. You would think they would have faster tests by now. If you can sequence my entire genome in like 10 days, why can't you do a test on my CSP in like three hours. That would be nice. 

I Will Always Believe...

***I wrote this before Christmas, and forgot to post it.***

With Christmas right around the corner, we have had some chaos here at home. I've been feeling a lot better, and that has made it so that our routines are changing. That on top of all the fun holiday outings and gift buying has led to some crazy schedules and a little less sleep for all of us.

Mike got called away to California last week for a conference. Lochlan and I stayed home and spent a few days and nights hanging out at my parents' house. One downside to the timing of this conference is that it happened over December 13th - the 5th anniversary of Saoirse's death. My best friend, Emily, came up to my parents' house and made cookies with me while Lochlan was still at school. We used to do that all the time when we were growing up (we met when we were 8 and were pretty inseparable after the age of about 10). It was nice to just do something mindless and fun, and of course to eat half the dough raw. Emily can always make me smile, and she knows just what I need on a day like that.

A couple days after Mike came home, Lochlan came up with a very direct question for us while we were riding in the car. He asked, "Does Saoirse sleep?" Mike and I looked at each other. Now, we know Saoirse is in the house - many times I have yelled at her for knocking Christmas ornaments off the tree, or moving something I needed. Mike also has woken up and seen her hanging out on my back (he is lucky enough to see ghosts, I however, am not that lucky). And we have always suspected Lochlan talks to her and sees her around. I told Lochlan that we didn't know if she slept, and that he should ask her. He very seriously said, "I can't ask her. She doesn't talk." This was such a hard hitting moment for me. It basically confirmed to me that he really does try and communicate with her. I told him that he should teach her to talk, and then he could ask her. He liked that idea. I'm now curious to see if he figures out a way to communicate with her.

I hope that he continues to see her and communicate with her as he grows. So many kids lose that ability, and I would love for him to keep it. I think that it is so important for him to have a connection to Saoirse, as she will likely be his only sibling. I will always continue to believe in her presence and her spirit. I hope she continues to support Lochlan with her spirit and her positivity. That is truly a gift that only she can give to him. I will always encourage him to believe and to keep his mind open to seeing her. Hopefully he will experience her all of his days. Maybe he can teach me how to see her for myself.

Saturday, January 7, 2017

Peds2040 Miami

I think the only thing better than being in Miami in January is being in Miami in January for the Peds2040 conference. I was super excited to organized the Young Innovators Workshop again this year. We ended up having two days to work, and had 24 kids join us - double what we had last year. I think the most fun thing was that we had some amazing tech geniuses - Maribeth and Amy - from Georgia Tech University helping to facilitate. 

This year we decided to take a targeted approach to the theme of the workshop - Game Theory, with an option to use augmented or virtual reality. Now, I am not a tech mind - I'm lucky if I can get my iMovie files to save. But after hearing what Maribeth was thinking about for the kids, I was really excited to see how everything would come together. 

I had been concerned that the workshop wasn't going to come together. I had missed a lot of meetings and planning steps during the summer and fall while I was trying to regain my health. I wasn't able to solicit a big sponsor like I wanted to, and I wasn't able to promote the event on social media the way I had planned. I was sure that we were going to end up with like 3 kids at the event, with nothing to work on, and that I wasn't going to be able to make the trip. My co-leader also fell into health issues herself this summer and ended up needing to schedule surgery for right before the event so she was not able to attend or to plan the way she had planned either. It seemed like it may just all fall apart, and right before Christmas, I was sure that I was going to cancel. But as I realized that we really did have kids filling out their applications (leave it to kids to fill them out right before the December 24th deadline), and that Maribeth and Amy had prepped themselves to be able to help as much as they could, I started to feel like we may have a chance at pulling it all together in the end. 

Boy was I right. We ended up with 24 participants, working in three groups, to build games that would help to solve some really challenging pediatric healthcare needs. Everyone got to participate and have their ideas heard. They were all able to come together as teams and really hash out some pretty advanced ideas, using some really creative and fun solutions. In the end we had three games that we could play together and see how kids' lives could be improved in a fun and entertaining way. 

One of the things that I love about this workshop - and the reason that I wanted to do it in the first place - is that kids don't have a filter. By filter, I mean preconceived notions about what is and isn't possible. If they have an idea, they just put it out there. If it doesn't fit with the group, they come up with something else. Kids are way more flexible when it comes to working in groups, and it seems like they know exactly how to collaborate and work with others, even when their idea may not be the one that makes it to the final project. This inhibition leads to collaboration like no other - and it's something that the adults at the conference could - and SHOULD - learn a lot from. 

In the end, each group presented their final projects to the other kids as well as parents and a few attendees of the conference. I put together a video of the days' events to show on the last day, but the last day is always low on attendees so it was a little like "preaching to the choir." But it's step in the right direction from last year, and the kids who attended are all really hoping that they can join us next year as well. My goal for next year is to make it so that the kids get to present their final projects to the whole conference so that everyone can see how really dedicated and creative they are, and how involving them in the innovations that iSPI is working on is the best idea to advancing the directive of the group. 

I feel like I missed a lot of the conference this year, but in all honesty, I think that may have been a good thing. I was running on pure adrenaline to get through the two days of the kids workshop, and I'm not sure how I was standing at the end of it other than that. Now home, I'm tired and sore, but glad of it. I'm missing friends and thinking too hard, but glad of it. I'm formulating ideas and making plans, and for sure am glad of it! I'm feeling human again. And that in itself is all I need to be.