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 I need to get the office into order, and get rid of some of the random stuff and outdated paperwork.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


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. 

Monday, January 2, 2017

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! 

Sunday, December 18, 2016

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!!!

Sunday, November 20, 2016

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.