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. 

Wednesday, November 16, 2016

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.

Sunday, September 4, 2016

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!!!