Transplant

Hi Everyone. I wanted to give a little update about what's coming up for me for treatment in a couple weeks.

In June I found out that my cancer is in remission - after 5 and a half years it is finally gone! While this was a relief to get to, it also led to a summer of intense treatments, and to a decision that I had to make about the next steps of treatment. It caused a lot of anxiety and panic for me, and there has been a lot of back and forth with myself and my doctors at both Dana Farber and in NYC. I have decided to go forward with the Autologus Stem Cell Transplant at Dana Farber. I will be starting my stem cell collection on September 30th, will be going to Las Vegas for three days to do a work presentation on October 4-6, and then coming back and going inpatient into Brigham and Women’s Hospital on October 8th for at least 3 weeks. I’m nervous and trepidatious, but I’m trying to focus on the hope that this will hopefully give me a chance to be off treatment and keep this remission for at least a few years- if not forever. I have about a 50% chance that I can hold remission for 5 years with this treatment. My doctors think this is my best chance with what we know is currently available.

I’ll be using a website to coordinate help like childcare, meals, and other needs during the month of hospitalization, two following months of home quarantine, and subsequent up to a year of restrictions and recovery. My lifelong best friend, Emily, will be getting notifications from the site as well to help with answering questions and being a point person to keep things centralized. I’ll be continuing to update needs as they come up, and this week there will be a bunch of additions to the calendar as I’m getting final reports and plans together for both help in the hospital and help at home with Lochlan.

This summer has been a rough one, and this fall and winter are going to be tough, but I'm hoping that I'll be on the mend quickly and will be able to stay healthy for a long time to come. Feel free to ask me any questions. I'm happy to share. 

Below is the link to the website with more info and help calendar. You can sign up through here to bring meals, or help with care for Lochlan, me or the house. There is also a link for donating if that is something you can do. We appreciate all your support and help. Thank you. 

https://www.giveinkind.com/inkinds/D0U5A7Y/help-during-kezia-s-stem-cell-transplant

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. 

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. 

....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. 

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.

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. 

Happy and Healthy New Year!

Happy new year to all! 

Since Saoirse died I've hated New Year's Eve. I usually sit and cry most of the day. Something about the number of the year changing that makes me feel even farther from the time she was with us. It gives me the feeling of leaping forward and she will always stay in the same place.

This year I expected to be the same as always. But this year was a little different. I missed Saoirse the same way I always do, and hated the year turning in that sense. But this year, two days before we traded in '16 for '17, I got great news. My scan shows amazing improvement - EVERYTHING IS SMALLER! - and my blood work is almost back to normal - my white count is down to 10K! (It's been over 43K and was up over 12k since I got pregnant with Lochlan.) I'm feeling better and things are finally looking like they are truly moving toward health in 2017! 

2016 all in all was a sucky year for me, personally. My health started fading right at the beginning, and it seemed like I was in a downward spiral for almost the whole year. There were some up moments, but for the most part those were overshadowed by the really scary moments. We did receive some help from some amazing people, and we are truly grateful for that. It helped us stay in our home and allowed me to get some of the much needed alternative therapies and medications that keep me from being stuck in bed on narcotics and managing nasty side effects from pharmaceuticals. And for that, I am definitely thankful! I am continuing to include my alternative therapies (tong Ren, acupuncture, diet, chiropractic, and cannabis oil), and will be starting art therapy soon (as will Mike). All of these currently come out of our pocket for costs. We are hoping also to continue to have Lochlan in preschool and keep our nanny. Our childcare vouchers have not come through yet, however, so we are working on seeing what the status is for those. I'm also working on additional financial assistance from foundations and the state. It's not all bad news, but we could still use some financial help from anyone who is able. 

In other news, we are working to build CareAline back up. This year took a real toll on the business, which is unfortunate because we had a lot of momentum built up at the beginning of 2016. The delay of the release of our new products has caused some turmoil, and has kept us from reaching the potential we wanted to reach last year. But, thanks to a small grant from Life Is Good, we will be getting our first samples ready to be put out there and used. I'm super excited for this launch to get going. We know that we can help so many more patients with these new versions, and that is our true mission - to help as many people as we can with our products. 

We are again at the amazing Peds2040 conference right now -this year in sunny MIAMI! We arrived today. Lochlan has been talking about flying on the airplane for weeks now, and asking when we are going to "Flor-i -dah" (it's so cute to hear how he pronounces it!). He was so excited today and we were excited too. Traveling takes a toll on us, but I was able to rest, and so was everyone else. We have our amazing neighbor with us and she is one of Lochlan's favorite sitters, so he is excited to spend time with her, and we are excited to have her to chase him! The kids workshop this year is going to be amazing! Two days and tons of fun. The kids are going to be working with game theory and VR to create solutions to some amazing issues that they have experienced in their own lives. I can't wait to see what they come up with for solutions and games. It should be a great time! 

5 years....

It's been five years. That seems like a milestone, but I don't know if it's really any different. It still hurts. I still think of what she would look like now. I still think about what she would like, not like; do and not do. I still wish she was here. I still wish for her to be a brat to me. I still wish she was playin with her friends. I still wish that her stocking would be opened on Christmas morning.

I've had two Nivolumab infusions since I last wrote. So far, they are going very well. My blood work FINALLY has made some positive changes. My anemia is better (that hasn't changed much in AGES!) and my white count continues to come down (had been up to 43k before my first Nivolumab). My doctor is extremely happy with my physical examinations so far, and I have a CT scheduled for right after Christmas to see how things are going elsewhere. Fingers crossed!

I have actually been feeling quite well. I've gained about 4 pounds (yay 114!), and I'm feeling much stronger. I've been able to get around without pain, and I've actually been able to entertain, play with and even CARRY Lochlan! He has been really loving spending time with me, and I've (for the most part) been loving spending time with him. We baked a batch of cookies yesterday, and he and I have had some great outings and fun times. I'm feeling quite normal most days - a stark change from before. Of course, I still have days that I feel tired and sore. This medication makes me sore for a couple days after the infusions, but also I'm doing more and being more active, which really adds to muscle soreness. And then there are the pangs that come when nodes are shrinking.

I've been able to help more around the house, which has been a huge help for Mike. I'm able to do some things related to CareAline, but I'm still a bit limited on what my brain will keep up with. I still have some chemo fog in there, which is frustrating. I also still have a hard time holding onto things with my hands - it's like there is a delay between when I think I will grab something, and when my hand actually closes around it. I'm hoping that with time and with exercise (and physical therapy) I will regain my muscle control. It's nice to feel more usefull, and to get out of my bed for most of the day!

I'm still resting each day. My body still has a lot of healing to do and a lot of catching up to do from the past year. We are going to be traveling a bit in the near future, and I'm feeling confident that things will go well. Peds2040 is in Miami this year, and I'm super excited to be doing the kids innovation workshop again. We are doing some really fun things with virtual reality, and I'm excited to let the kids play with some fun, new technology! Plus, who could resist Miami in January?!

Another big project I'm jumping into is finally starting in earnest to write my book. I started this book a long time ago, but wasn't completely sure of it's direction and tone. I think I'm ready to go at it full force and give it a go. I won't yet reveal what it is, but I will in time. I may even seek some of you all out to help me and contribute. This project could be exactly what I need. I know it's something that is needed in the world.

This post is a little disjointed, but that's kind of where my brain is. Getting better is fabulous, don't get me wrong, but it has given me the crazy, all over the place, mind that I used to always have. A thousand things in there and a thousand projects going on, and I'm not really quite able to process it all. I've noticed that while I physically am feeling better and able to do more (which makes me want to try and do all the things!), my brain has not caught back up yet. I have to remember to slow down and "divide and conquer" a bit better. One thing at a time! (Button my pants first, then walk down the stairs). Multitasking is not yet back to normal for me. I will be relying a lot on lists and notes and reminders if I'm going to be working on all these things at once. Forgetfulness was not really part of my life before cancer, but it sure is now. One of the downsides to conventional treatment. I can't wait to start some physical therapy (hopefully right after the holidays) and start to build up my strength and flexibility physically, and hopefully then I can focus on also working my brain back to normal. I still have a long road ahead, but I am feeling like I'm finally starting to walk down the road rather than sitting looking at it in front of me - waiting for the signal to go.

Thank you to all who have supported us through this journey so far. We are so greatly appreciative. We are not quite out of the woods yet. There is much to be done to build back me, as well as build back the business since it hasn't been the first priority for the past six or seven months. We have a lot of irons on the fire, but we have to make sure each is ready for forging. Please continue to share my story and my blog - I want to be an encouragement to others as much as I can. And if you can donate, or have friends or family who may be able to donate, we greatly appreciate it. I still pay out of pocket for various parts of my treatment, and our private child care assistance will be ending in January (our state vouchers have not yet come through), and we are still not taking much or a salary for Mike as we build the business back up. Any help is greatly appreciated. Thank you!!!

Pain, Air beds and Buddism

On Thursday I had my first Nivolumab infusion. Turns out that they don't normally premed with this drug for their patients with other cancers. With an afternoon appointment, we hit traffic going in, so we were running late, and I got a late start. It's a one hour infusion, and I have it through a peripheral IV (as I feel like right now I don't need a bigger line for a short infusion with no pain). The infusion went smoothly, and seemed to be worry free. 

We got out of the hospital at about 4:45, just in time to hit rush hour traffic on the one highway that leaves Gloucester to go toward home. We got stuck in traffic, and then it hit. Excruciating pelvis and hip and lower back pain that had me screaming, cursing and writhing in pain. It took a little over an hour to get home (should take about 25 mins). I went up to bed and took two pills - an Alieve and an Ativan. I was starting to get nauseous, and I was starting to panic about the pain. I tried a bunch of positions, a heating pad, and relaxation techniques. The pain wouldn't stop, it was getting worse. I was having a full blown panic attack at this point. I started shaking uncontrollably and I was hyperventilating. I told Mike to call 911 - I needed help with the pain, and oxygen immediately. 

The paramedics put me on O2 asap as my fingers and lips were already blue. My pulse ox was in the low 80s. As soon as the oxygen flowed the shaking started to calm down. By the time we got to the hospital the shaking was done, but the pain was still a 10, which for me is insane - remember I did a c-section and only took ibuprofen (and less than they said) after, and did an unmedicated 23 hours of labor VBAC with no trouble. There have been two times I have asked for strong pain meds - my second set of kidney stones (it was 6mm, the 4mm one I passed with only taking Alieve), and bone pain from Nupogen injections with my first rounds of chemo in 2011. They put me in a room asap, and I asked the nurse for oxygen so that I could keep the panic attack at bay. She was happy to do so. I continued to cry and ask for help while waiting for the doctor. I felt horrible for the nurse, as she couldn't do anything without a doctor's order, and the ER was extremely busy. She put me as high on the list as she could (there had been people waiting for over 3 hours to be seen already) and I waited about an hour and a half for my meds. The nurse practically ran into the room with the IV morphine when she got the OK. Thank goodness for IV meds and how fast they work - while she was still pushing the dose I felt things start to relax and release. The doctor was trying to ask me questions and I had to take a second to get my head back. From 10 I went to a 3 or 4 very quickly and I finally laid back and could just be in one position. The pain started creeping back up to a 5/6 over the next hour or so, so we decided I would stay for observation overnight, take a Percocet to see if that would be enough to control it now that we were getting ahead of the pain, and they ordered a few extra tests. I apologized to all the nurses and the doctors for being so upset when I got in. They have a hard job, and I always hate to be a bad patient. 

Because I just needed to be observed and pain meds if the pain came back, they put me on the observation floor. I got up there just before midnight (after dozing a few times in the ER - thank you narcotics!), and the nurse was amazing. So sweet. Here is the greatest part - I was in a bed that had an alternating pressure air pump! The nurse said that some people don't like it because of the sound it makes (I'm used to sleeping with noise, so no biggie for me), but I found it to be the most amazing experience ever! For the first time in I don't know how long I slept for hours without needing to move and without having any pain. I even woke up pain free! I figured that it was thousands of dollars to get a mattress like that, but turns out I can get a topper with the pump for $100-300 from Walmart of all places. Going to be getting one asap - sleep is my restorative time. 

When I got home, I found a great gift from a friend - a book that I had pinned on Pinterest called "How to be Sick" by Toni Bernhard. I have already finished it. It's a look at how buddhism and it's teachings can help chronically ill people and their caregivers live less stressfully with the changes in their life. It's an amazing book and I highly recommend it to anyone who is going through an illness, taking care of someone with an illness, or the family and friends of someone with an illness. I have already implemented one or two of the things, and I'm looking forward to expanding my practice. I can't remember the last time I read a whole book, and I don't think I've EVER finished a book in a few days (thank's dyslexia). It is truly amazing that this woman - who has way more daily struggles than I do - was able to share her story and her Buddhist coping mechanisms to help all those who read her book get through with grace and peace. I will have to send her a thank you. 

I'm already feeling that this drug is having positive effects (even with all the pain it caused). I already have noticed I'm able to eat more in a sitting (showing signs that my spleen is shrinking), and I can feel twinges of things happening in my neck and armpit, and the swelling is down there as well. Even the swelling in my hip and lower abdomen is less already. I'm not counting on a miracle yet, but at least things seem to be moving in the right direction, and that (thankful to my latest read) is something to be joyful about. 

Long Overdue...

It's been a long time since I posted. I've kind of been in a depressed funk. With the weather getting colder, and not being as comfortable for outside sitting, I've spent a lot of time in my room binge watching Netflix and project runway. Not exactly my highest point.

The update is that as of October, the Brentuximab was no longer shrinking my cancer. It had done a great job getting rid of a bulk of my disease, but the places it didn't touch have started to get angry again. I have a couple of small new spots on both my lungs and my liver and the mass in my abdomen and nodes in my hip have started to get a little bigger. This threw me for a loop as I was hoping that I would be done after 6 rounds, but it seems like I'm back in the hot seat of deciding on new treatment .... Again!

It's overwhelming to have to do this over and over again. I went to Dana Farber and met again (a year and a half later) with dr Armand. This meeting didn't go as well as I hoped, but not because of the things he was telling me, but rather his tone and some choice words he used. While I was frustrated with the way the appointment went, I did get most of the information I needed to make a decision on my next step in treatment. SO here goes...

My next drug of choice is Nivolumab - a PD-1 checkpoint inhibitor that in the spring was still on trials, but is now FDA approved and available for hodgkin's patients. This drug has shown great promise in getting people into remission - and many have had durable remissions. It has not been used in hodgkin's long enough to have official "cure" data, but it is a great next step for me.

This drug also will not (likely) effect my chances at having a successful stem cell transplant in the future should I need one. As it is not a chemotherapy, it doesn't create the chemo resistance that can happen when you try chemo after chemo after chemo and keep changing those types of drugs (this is why I chose this over combining Brentuximab with Brendamustine - which is another good combo, but would be a treatment that could potentially reduce my likelyhood of getting cure from an auto transplant).

A few things that come in the future - as far as this drug goes, I'm hoping to get a complete response (CR). I am willing to stay on it for some number of doses if that response is reached. As maintinence therapy I plan on doing a few things - making sure my diet is more low carb, Tong Ren therapy with accupuncture, much more regular chiropractic care (someone remind me I need to make an appointment!), Cannabis oil in low doses, regular detox, yoga, rebounding, and mindfulness work (massage, meditation, etc). The biggest factor that will (my doctors and I believe) help to keep me in remission is that I have taken future pregnancies off the table. My original diagnosis and my relapse were both linked to my pregnancies, and there is some science that says it could be linked. Taking that off the table will hopefully keep me trigger free for relapse in the future. (Pregnancy is linked to hodgkin's with the PD-1 checkpoint - a hormone (I think it's a hormone) that is also excreted by the unborn fetus to keep safe from the mother's immune system.)

While I know that cancer is a metabolic disease, and not a true immune disorder, the immune system plays a vital role in helping the body clear widespread disease. This is my hope for Nivolumab for me - to clear my of my widespread disease, while I work to restore my metabolism. (If anyone wants to come over and put my rebounding trampoline together, I wouldn't object 😀.

Timeline: Because of the holidays, and trying to avoid the chaotic schedule that will happen at the hospital next week, I am starting Nivolumab TOMORROW (Thursday) afternoon. Since my last dose of anything was in the middle of October, I'm feeling good about getting going on the next step. My oncologist and my clinic nurses are very familiar with this drug, as it has been approved for other cancers for years, and have had hundreds of patients on this before, so it will be an easier first day (at least for them) than my first day of Brent. I'm glad I get to see my nurses tomorrow and I'm keeping my fingers crossed for minimal side effects and fast acting cancer killing!

Big question: how am I feeling? I feel pretty good - for sure better than I felt in July when I started the Brent. The only thing that is really bothering me is my hip and lower back. There is a node in my hip that pushes against an old hip flexor injury that is all scar tissue, so any little irritation causes pain. I am managing with just Tylenol and the occasional alieve, which is good. I hate taking pain meds, but right now I need to be able to at least sleep and function semi normally during the day.

With this new drug, we are not sure what my needs will be. We should know more over the next few days. If anyone wants to bring meals, I can reopen the meal train dates. That is always a huge help for us. If anyone wants to start taking L on Thursday mornings for us, that would be helpful as well. Lastly, for those who have supported us already, thank you so much. We greatly appreciate it. If you are able to donate, or know someone who may be able to donate, please share and click the button in the upper right of this blog. Unfortunately we are still not out of the woods financially (although we have had some amazing help from some amazing donors and organizations - THANK YOU!), and every dollar helps.

Best to all those in this fight with me - I know it has been a long and hard road. Hopefully it can be less chaotic soon.

Feeling Gipped....

For the past few days/weeks, I have been really feeling like cancer has stolen my life. I had my scan on the 29th, and my dr. appointment on the 30th to go over the results. I was feeling pretty confident - based on what I was feeling in my body, and the things that I could feel from the outside. Sadly, my oncologist was not quite as happy about the scan results. While I have made some great progress physically, and in most of my body, there were just a couple places that were worse than my scan in June before I started treatment. However, I know that those places have gotten smaller in the past few weeks, so in my mind, it wasn't really as bad. Still, it's hard to go in and think that you are going to get a happy face from your doctor, and then she's all Debbie Downer about everything - even though there were some major positives (which she pointed out later and agreed with me). It's sometimes hard to have hope when no one else around you seems to share in that. 

With the end of the summer hitting us right in the face, I've really noticed how much I have missed this year. Not once have I gotten in the ocean, not once did I get to make a sand castle with Lochlan or bury him in the sand, not once did I get to sit in the backyard with a fire and roast marshmallows, and not once did I go camping. I have spent so much time sitting, or in bed, or feeling gross, or in pain and I'm just hating that I'm missing out on so much. I love summer and doing things that are outdoors, and relaxing and calm, and I missed all that this year. I also feel like this summer Lochlan really came into his own being a "big kid," and I missed so many opportunities to help him grow and learn and have fun. I didn't get to play at the playground or take him to the zoo. We didn't get to go canoeing or hiking or splash in a waterfall. There are so many places I want to explore with him, and I just feel like that has been stolen from me. 

This summer has also been really hard because I have started to come to the realization that having more children is not going to be possible for me. My cancer has been exacerbated by both of my pregnancies, and - after the battle I'm forging now - I have to do everything to avoid another relapse. It breaks my heart that Lochlan is going to grow up without a living sibling. And even more, it hurts that he has had to play mostly by himself this summer because of it. Saoirse's absence is being felt majorly as I watch him sit in a kiddie pool full of dirt digging by himself rather than chasing his big sister around the yard. His face seems so sad, and I wonder if he feels like he is missing out, even though he doesn't really know any better. 

Parenting Lochlan has been a real struggle for me since he was born. I haven't been able to connect with him in the way I feel like I connected with Saoirse. I feel like I'm " blaming" him for my cancer, and at the same time distancing myself so that if something happens, the heart break won't be so bad. It's crazy - and unfair - and I HATE myself for it. I spent my whole life growing up just WAITING to be a mom - it was my career goal, and my life goal. And now that I have gotten my wish, it is trying to kill me - literally. It is such a surreal feeling for me to want to send him off all the time, and spend my time doing "nothing" or doing something that doesn't involve parenting. I wish that I could separate his existence from my cancer in my mind, but so far, I just haven't been able to force myself to do it. 

Round 4 is in the books. I was hoping that by this time I would be in remission and that we would be doing a couple rounds to just make sure it was all gone. It's not the case, and I'm stuck in a holding pattern still until we see more results. Luckily, many of the major physical issues I had for the first two and a half cycles have subsided, and I am feeling like I can be more like myself and am more able to do some normal things. I am hoping that things keep reducing, and I keep feeling well, and I can start to do some of my normal activities. I need to feel like a person again - not just a patient - and I hope that maybe I can draw myself back to life. 

One Step at a Time

The second round of Brent took a major toll on me physically. The second dose is notorious for being the worst, so I had sort of mentally prepared, but it was a hard thing to deal with. The joint and muscle pain, the neuropathy in my feet first thing in the morning, the extreme exhaustion just trying to get around with all that. It was super hard for me to have to be back to relying on others for almost everything again. There were definitely times that moving wasn't so bad (and the symptoms seemed to ware off by my next dose), but as soon as I felt a little better, I was so tired I had to sit again and the whole "stiff joints and hard to move" cycle started again. 

Eating has also gone back to being more difficult. We haven't been getting as many prepared meals delivered, so more cooking has been required. I haven't had the voracious appetite I had, and foods are harder to pick out (sucky part about chemo!). Having hunger but not wanting anything we have in the house has been a big challenge, and there are days when this is so amazingly frustrating I eat almost nothing (or just salad and fruit which is not exactly calorie dense). Because I haven't had any real nausea, I haven't been forcing myself to eat constantly and that is showing. My weight is "stable," but I need to gain a few pounds (or like 15) and eating will help with my energy so I have enough to exercise and build my muscles back up. 

My third round was "delayed" by three days (well, the weekend) because I had an event that I desperately wanted to attend on my normally scheduled chemo day. Luckily, my doctor was totally ok with this change, so I was able to attend! I went to Jacobs Pillow in the Berkshires to attend a talk and book signing by a photographer who's work I have been following since I was probably in middle school - Lois Greenfield! Mike and I went out for the night - we drove and stayed in a Super 8 hotel a few miles away (I would love to stay out there for a month! It's so peaceful and beautiful and relaxing. Such a change from here). When we arrived, I was a bit sore and stiff from the drive, so we rested (with my swollen feet up) for an hour and then I BEGGED to go early so we could get good seats. We got to sit FRONT ROW and spoke to some awesome people while we waited (an hour!) for the event to start. I brought my marked up copy of Lois' second book (couldn't find a copy of the first book- I either didn't have one, or lost it), and bought a copy of her new book while I was there. Her talk was so amazing - and I even got to ask her a question at the end that led to a great topic discussion. 

She signed books after the talk, and I got her to sign my marked up book and my new book. I also got to show her a print of my work (which I gave to her to keep) and she told me to keep in touch! I was so excited and I can't wait to reconnect with her in the future. What an amazing way to spend a day that I was supposed to be stuck inside with an IV in my arm! 

Round three went off without a hitch, and over time my stiffness and pain started to subside. Moving started to get a bit easier, and I started to feel a bit more normal. I scheduled my scan for the 29th of august, so scanziety was setting in, but I was confident in how I was feeling so I didn't think too much of it. Hopefully all will go well. Keep your fingers crossed!!!