Light The Night 2017 (Year III)

On August 28th this year I celebrated my third rebirthday. Usually around this time of year I get extremely emotional. It is like my annual time of reflection, but with school wrapping up and being so busy with work, I almost didn’t have time to even to go down memory lane or maybe I just didn’t want to.

But recently my friend’s Dad was admitted to Lunder 10 and suddenly there are all those emotions that I somehow was avoiding. When you walk through the first double doors on that top floor, there’s a little waiting room. I’ll never forget the first day I sat there. It was a Saturday. The day after my primary care physician had called me crying telling me, “I think you have leukemia.” And there I was sitting in the waiting room just crying with my Mom by my side. I couldn’t stop the tears, I was numb, and I was in shock. Little 22 year old me was sitting there waiting for the other shoe to drop. I was thinking that I had a few weeks tolive. Why else would I be there on a Saturday? I was so scared. It was such a surreal moment and then from that moment on it became this day-to-day thing. You suddenly have multiple doctor’s appointments a week, your fear of needles quickly becomes a thing of the past, and you suddenly can read your CBC counts like you’re a medical professional. It’s one test at a time, one appointment at a time, and just one day at a time.

Turns out I just had a doctor that wanted to see me ASAP because that’s just the kind of amazing doctor that he was. My initial prognosis seemed easy—A targeted chemotherapy pill that was going to kill the cancer cells, but not my healthy ones. Easier said than done, but luckily my doctor had a back up plan who just happened to be my baby sister. Many people often say I don’t know how you did it, and my answer is always, “I just did, and if you were me, you would do it to.”  For me, treatment may have been the easiest part of all this. There’s really no other choice than moving forward. When I was on Lunder I felt like I was finally moving towards better health after a year of my failed treatment. But then as time goes on, things come to light that you never really thought about, because before you were just in the moment. The last 3 years of my life have been hard. Some how you have to pick up the pieces and put your life back together again. But things are different. Some days are a battle between being upset over the fact that you don’t feel like yourself and then you feel guilty because you feel like you don’t have the right to be upset because you are here, breathing on this earth.

Recovery is a rollercoaster. My thyroid stopped working, I went into menopause or also known as primary ovarian failure (let me tell you, not pretty). But some way, some how you just have to keep going. Slowly things come back together. Your hair grows out into the waves you always wanted when you were little, your hormones are finally on the right dosing so you don’t feel like a hot emotional mess 24/7, and you learn the tricks for dealing with dry skin, your eyeballs sticking to your eyelids, and every other weird post treatment symptom. It becomes your new normal, and you do it. You keep moving on. And somewhere within those days, months, and years you turn into a different person. It’s still you, but a different version of you.

I walk every year at Light the Night for not only myself, but for all the patients who are sitting there crying in those waiting rooms, for all the patients in isolation on Lunder doing their figure 8 laps with a mask and gloves, and for all the patients who were taken from this world far too soon. Cancer treatments are getting better, but we’re still not there. But I like to think of it as one day at a time, and if we keep going, some day we will get there.

If you can donate a morning coffee’s worth or little to a lot more, I will appreciate it more than I could ever express. If you’d like to walk with me this October 19th, I’d love that too. It’s a magical, emotional night, and I’d love for anyone to share it with me. And maybe you’ll feel a little extra hope among those lanterns to believe that someday there will be a day that when a little 22-year-old girl gets that call, she won’t have to feel so scared in that waiting room and she will know that it’s all going to be okay.

Stronger every day,
Lauren

http://pages.lightthenight.org/ma/BostonL17/LBourdon

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The Anxiety Snowball

If cancer gives you one thing, I think most people can agree that it gives you perspective. This new perspective could be lobbied as either a gift or a curse, depending on what day it is. In more concrete terms, this perspective makes you ask two questions, can I control this or can I not control this? Is this a big problem or a little problem? I’m definitely a control freak in a lot of areas of my life. I like a clean and organized house, I work really hard at school, I work really hard at my job, and I take my medicine on time every day. Why? Because these are things that I control. So many people cause themselves so much stress and anxiety over things that they don’t even need to be worrying about. For me, cancer has taught me to control the things I can control, and try to let go of the things I can’t.

If only that was easier said than done.

Last week I had a bad week. And I really don’t like to describe it in that way. But it probably was one of my mentally toughest weeks that I’ve had in a long time. I think it was a combination of being exhausted and overwhelmed by a lot going on (school starting again, changes at work). But if I had to bet money, I would say that the primary reason for this week’s panic was my doctor’s appointment. I’m now on 4-month appointments—which is huge. For a long time I was on monthly appointments, and even at one time twice a week. So this is a good thing, right? My last check up went super well in September, and I would say that from September until the beginning of January, I was feeling great. No anxiety, happy about life, and then something in my head changed Monday. And then it seemed to get progressively worse.

My anxiety was like a snowball. Something that was simply a little snowflake on Monday somehow rolled into this giant glacier-sized ball that I felt was crushing me. By Wednesday, I went into full panic mode. Doctor’s appointment was the next day, Thursday, and all I could think about was, what if I’m not okay, what if the cancer is back, what if that ache in my bones last week is a bad sign, what if I’m sick again, what if I have to have another transplant, what am I going to do about my life. I could go on and on, but I can’t even recall all the thoughts that went through my head.   Around 2pm, I was about to go into Whole Foods to grab some late lunch and I just had to sit there in my car. My heart was racing, I was gasping for breath, my head was spinning, and I felt like I couldn’t breathe. I was having a full-blown panic attack.

BREATHE. BREATHE. BREATHE.

I sat there and just tried to breathe: in through my nose, out through my mouth. I closed my eyes and focused on my breathing with my hands on my stomach trying to steady the rate of my diaphragm rising and falling. When I felt like I could finally feel the air in my lungs, I just lost it into sobbing tears. I sat there for a good 10 minutes and just cried.

Many of all my sweet friends and family have commented how strong I am, or they say they don’t know how I did it. I know this may sound strange, but HAVING cancer was much easier to do than trying to BE a survivor. I don’t want that to sound ungrateful, because it’s not coming from that place at all. What I’m trying to say is that, when you’re in it, fighting the fight, all you have to focus on is getting out. It’s almost like you’re running towards that end goal. You see the light and you just keep your eyes on that. But the problem is, you think it’s all over once you hit the light. I’m in the light, and so incredibly grateful to be in the light. But being back in the light is not easy. With complications and side effects of treatment, being in the light sometimes feels directionless and helpless. Every bone ache, every headache, every bruise, I worry. Some days more than others, but I try to remind myself this is something I cannot control.

I read a blog the other day that had the best quote, “It is ok not to be ok sometimes.” Isn’t that everything? Last week I was not okay. Anxiety does not make you any less of a strong person, or anymore of a weak one. It just is what it is. It’s something I can’t help. I’ve decided all I can do is focus on the things I can control and breathe through all the rest.

My blood work came out to be okay. My white blood cell count was high, cue immediate spike in anxiety again. But everything else looked great, and I definitely had a sinus infection and am feeling much better now that I’m on antibiotics. However the crazy anxious lady in me did send my results to another doctor friend, who reiterated that I don’t have anything to worry about (E- if you’re reading this, thank you.)

So that is that. I go back in another 4 months, and I have a feeling that this might all come back again. In the next month or so I will go back to my blissful non-anxious life, forgetting most days that I ever had cancer, and then May will come and I will approach another tailspin. This next go around I’m going to do my best to lean on the people I love, make time for myself, go to yoga, meditate, and breathe. But if it happens again, will someone please remind me that it is okay to not be okay.

Sending you love & good vibes.

 

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The link to that blog post I referenced earlier 🙂

https://www.ihadcancer.com/h3-blog/01-24-2017/im-not-ok-but-im-ok-with-that?platform=hootsuite

Survivor’s Guilt

Hiiii,

It’s me, finally. Only more months later than I would even like to admit, here I am posting on this blog. If we’re going with my usual let’s get real honest about things, I have maybe 5 or 6 posts that I wrote that I could never seem to finish editing. They either felt unfinished, too negative, or generally just something I didn’t feel like discussing. I’ll post them someday, maybe :). But sooo what’s been going on? I’ve been back at work since mid-October, I started grad school again, and somehow I’m actually feeling like a typical twenty something lately— someone who just happens to need 9 hours of sleep and is still trying to figure out how to style these curls in the post pixie phase (SOS- send help)—for another blog post, soon? I have been kind of battling post-treatment effects- particularly hormone/ thyroid stuff, but I’m going to save that topic for a different day. Today’s post is about something so much more.

Survivor’s guilt, have you heard of it? It’s a term that floats around in the cancer survivor community. I’ve read about it and listened to others speak about it. It’s almost like a PTSD thing, where you begin to question your own survival and start to relive emotions that you were experiencing during treatment. But since I was classified as in remission, I had never really experienced it. Some days I felt selfish for not feeling guilty when so many were telling me how overwhelming it was for them. I ultimately just pinned it on my overall mentality through these past crazy 3 years. I had always told myself when I was diagnosed that I was going to survive, no matter what. So I chalked it up to me just being okay with that truth.

Rewinding a bit to tell this story. A lot of you know my involvement and passion for The Leukemia and Lymphoma Society. I try to help out whenever I can in their different campaigns by speaking at companies or fundraising myself. A few months ago, I was very humbly chosen as one of the honored heroes for the Boston Marathon that members of the LLS Team in Training are running for. And if you know me at all, you know I’m a total open book. I’m always more than happy to talk about my experiences in hopes that I can help someone else realize that they too can get through being dealt a shitty life card like cancer. I’ve been doing some peer counseling here and there, but overall since I’ve been back at work, living life, I had been feeling like this was all behind me, like I got out of it relatively unscathed. And then this past Saturday I went to the big 20-miler run for Team in Training to support the runners and listened to mission moments—these are featured every week of training where runners can speak about why they’re running. One girl got up and told her story of her brother. He needed a bone marrow transplant, she was not a match, and he had passed away shortly before she ran her first marathon last year. My stomach was in my mouth, and I was trying not to lose it. But I seriously felt like I had just been punched in the stomach or diagnosed all over again. Do you know that feeling? Like your whole body is trembling, tears are welling up in your eyes, and you just want to collapse. The second person got up. This was a man whose loss was too recent that he couldn’t talk about his experience, so he spoke of his accomplishments and how they were a direct reflection of his mother. There are no words for the rawness of his emotion and love for his late mother. After the conclusion, I turned around and lost it. I told a friend standing next to me that I just needed a hug. I’m not sure what came over me. I felt hysterical. This level of sadness is something that I’m not sure I even ever experienced when I was in treatment. I still have knots in my stomach. This was it; this was what everyone was talking about. This was survivor’s guilt.

My rule when it comes to sadness is that you just need to cry it out. You must fully acknowledge what you’re feeling, accept and feel it, and then let it go, but only when you’re ready. Whether you need to cry for 5 minutes, or 6 days, do it. It’s the only way to get through it. And that’s just what I did. I drove home to New Hampshire a few hours later, blasted some of my favorite cry music, and just let myself sob (yes I have playlists for crying- I’ll share if you need some suggestions). This morning at Easter brunch I almost lost it again telling this story, and now writing this, I have tears. Feeling the pain that those two individuals shared with us pulls on my heart in a way I can’t quite find the words for. All I keep thinking about is how it’s not okay that their loved ones weren’t given the same luck I was. In fact a few weeks ago I made a comment about having terrible luck, when a friend reminded me that actually I have incredible luck, it just came at a different time. He’s so right. Luck is the only explanation that I have for the question on repeat, why did I get to survive when thousands every day do not? There’s no rhyme, reason, or logic behind any of it. It’s just pure luck. Liza had a 25% chance of being my bone marrow match, and by some miracle we were on the right side of those odds and she did it, she saved me.

In reflecting on this weekend I am coming to admit that lately I’ve been a little caught up in not being the happiest with my body in my post-treatment state. But man, this type of emotion is something that really puts those stupid little things in perspective. It makes me pause for a little longer than I would. I am so damn grateful. The reality is that instead of procrastinating my homework right now, and getting ready for the week ahead, I could be very sick, waiting for a bone marrow transplant, or I could even not be here. This weekend has been full of a lot of reflection, emotion, and deep yoga breaths. Balance in your days is key. Some days are for being grateful, some are for feeling crappy and being angry, and some are even for wondering why not me. If you are experiencing survivor’s guilt, please believe that living your life is not a betrayal to those who didn’t get the chance. I think it’s honoring them in the best way. I always blush when people call me a miracle, but seriously, bask in that word. Say thank you. You are, and it’s okay to feel lucky for it. The more days that pass post transplant, the more I have seen my life shift into a different mental state of being a person who survived cancer, and not defining myself by being a cancer survivor. I’m not sure if that makes sense, but maybe some will understand. So my last and final thought for you tonight is that wherever you are in life, whatever struggles you may be feeling, accept them, acknowledge them, and let them go when you’re ready.

Until next time… sending you love and light with gratitude.

Starting Fresh

What an expression, right? What really defines that fresh start that we all love? It could be anything from starting a new agenda book or changing your career entirely. Or maybe, like what I’m discovering, it’s going back to doing the same things that you once loved. This summer for me has been all about fresh starts and taking the time to think about what I really want out of life. What do I really want? I want to feel happy again. I’m trying to refresh my life with new energy. I recently moved in with an amazing friend, got new furniture, and traveled. This past month or so I feel like I have been finally getting back to living my life on my own terms, not cancer’s. At first I was nervous that filling my days up would make me tired, because I can’t remember the last time that I wasn’t tired all the time. But now, with this healthy blood and bone marrow, I actually have the energy that I’m supposed to have. Of course there are limitations, but it’s given me a little more courage to start doing more things that I love.

On a recent trip I finally got back on a horse. For those of you who don’t know me as well, horses have always been a big part of my life. Throughout my childhood, my horse was my happy place. He’s the one I went to see and spend hours with when I had a bad day. My summers were filled with horse shows and enjoying life for exactly what it was. And then college happened when riding wasn’t as convenient, and then about a month after I was diagnosed my horse Clifford was also was diagnosed with lymphoma and was put down a month after that. In a way I felt like I couldn’t ride and I didn’t want to ride anymore. I felt guilty as if I had done something that had made him sick. It was almost as if his death was symbolic for the end of my riding career. Later that day after I had casually ridden around, I cried my eyes out. I couldn’t believe that I had gone so long without reconnecting with the sport and animal that I loved so much. Riding was the therapy I had been missing all along. Of course physically I couldn’t ride for a while anyways but now that I’ve started again, I can’t even begin to tell you how happy I am when I’m at the barn. Because horses simply make me happy, and happiness is the goal I have in life.

So what else did have I been missing? My kids. I recently visited two of the boys that I had spent hours and hours working with throughout the previous year. They had sent me pictures and Facetimed with me during my recovery since this past August when I had to leave them always bringing a smile to my face. An amazing thing happened: As soon as I walked through their door it was as if nothing had changed. Their excitement for life and laughter reminded me how badly I was missing them in my life. They had been my lifelines for that entire, insanely anxious, and traumatic treatment year I had before my transplant. These kids, all of my kids, made me happy. How could I leave a job that makes me that happy? So with some discussions with my doctor, I’ve decided to stay with my career as an ABA therapist and continue to work to get my BCBA and master’s degree in ABA, instead of pursuing a different degree in counseling. I’m going to start off slow and after my vaccinations, I’ll go back to working part time. Not to worry- I’ll carry a million bottles of hand sanitizer and wipes. I know I may get a few more colds than the average person, but ultimately I know that this is the right move. As much satisfaction as I have found in helping other cancer patients, I feel as though it’s time for me to start living my life beyond being defined solely as a survivor. On one end I’m going to continue to volunteer for LLS by raising money, spreading awareness, and being a part of the peer-counseling program. Volunteering makes me happy and helps me feel as though I’m giving back in some way to honor my second chance at life.

All in all, with the mark of my 25th birthday I feel as though this is going to be my year of fresh starts. I’m finally physically and mentally ready to go back to just being me. I’m able to simply say “thank you” when someone tells me that they love my haircut. I no longer feel the need to divulge that it’s my post-chemo hair. I want to appreciate all the joys in life without constantly being reminded of the pain and struggles that I have gone through. One of my nurses on Lunder once told me that twenty years from now, most days I will actually forget I even had cancer and this whole thing was just going to be a distant memory. I’ve always held onto that thought in the back of my mind while secretly imagining how that could ever be. But now, I’m just starting to understand that feeling. I can tell you this, it feels pretty good. At this moment in time, I feel happier than I have in a really long time. This past year or so I was just trying to get out of the tunnel alive. When you’re in that survival mode, there’s not enough time or energy to really do the things you love. But now, it’s finally the time for that fresh, happy start. So here’s to enjoying life with my friends, rocking the pixie cut with pride, and restarting my riding career with my new baby Majestic B (pictured below). I’m so blessed to be here living today with a renewed passion for life, but most importantly finally just being able to be happy.

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Love for LLS

Sooooo I’ve been super MIA. Why you ask? Well I was involved in this little thing (ha huge thing) call the Man and Woman of the Year Campaign to raise money for the Leukemia & Lymphoma Society. And then post celebration I was exhausted, slept for days, and then OF COURSE, got sick. Not like super sick, but I had a week of these crazy, stupid fevers that still have no definitive source, but at least they’re over. PHEW

So what is MWOY (abbreviations are so much easier), you ask? Let me give you a little run down. It’s a group of men and women, some who have a close connection to blood cancers, who compete against each other, but really together to raise as much money as possible in only 10 weeks. When I was first asked to go to coffee to talk about the campaign, I was shocked. My first thought was oh my gosh, how could I ever raise THAT much money? But Jean somehow convinced me to sign on and I patiently waited for kickoff night. During the 10 whirlwind weeks I met some incredible people including some survivors that I feel so blessed to have been connected with. I learned how difficult and time/money consuming it is to plan good events. I learned that some people need lots of reminders. But most importantly I learned how generous the people in my life are. When I say that your donations make a difference they really did. How much you ask? In total together we raised $29,717!!!!! Never in a million years would I have ever thought I could raise that much money. And for an organization that is so close to my heart. It’s not just the fact that I have leukemia that makes me love LLS so much, it’s the fact that they are the ones who are truly making a difference in the future of cancer treatment.

When I read support blogs and think about the people who are sitting there waiting for cures, or waiting for bone marrow donors, I feel sick. Like that punch in the stomach, or I’m waiting for something bad to happen type of feeling. It’s not fair, and those are the simplest terms I can put it into. For some reason I got my miracle, her name is Liza and she saved my life. I’m no different from the other patients except in the department of luck. So what am I going to do about it? I’m going to make sure I count my blessings every day, life my life to the fullest & healthiest, and raise money and awareness for future patients. I want to actually be part of the community that changes the outcomes for those who are coming after me. So if you were one of the ones who found it in your heart even to donate just $5, know that my gratitude knows no boundaries. Your generosity is helping me achieve my goal in giving back and I couldn’t do it without you.

If you know my story with LLS, you’ll know that I walked in my first Light the Night Walk last year on Boston Common just 42 days after my stem cell transplant, mask and all. It was during that campaign that I was connected with the amazing Massachusetts chapter and from there I have met some incredible people doing incredible work. I will be walking again this year with our team, Lauren’s Light. Although I don’t think I can raise another 30k, I know that no dollar is too few, and every dollar that I do raise is going to the right place. If you wish to join me, please sign up at the link below. I ask that if you would like to walk, please commit to raising $100 so you can get a LLS t-shirt and an illuminated lantern to light the night with.

So here’s to making someday today.

http://pages.lightthenight.org/ma/BostonL15/LaurensLight

Happy National Nurses Week!

Today is National Nurse’s Day, or rather the kick off of National Nurse’s week- and somehow I just found out about this later in the day! How did this happen?! This needs to be something that is blowing up everyone’s Facebook feed. No post or string of words could really ever grasp the magnitude of my appreciation for my nurses. From the day I was diagnosed the nurses of the Leukemia and Bone Marrow Transplant Department at Massachusetts General Hospital have been there for me every step of the way. Their dedication to patients is amazing. From apologizing a million times for sticking me when my veins are not cooperating for blood work, to asking about how I’m doing and genuinely wanting to know what’s going in my life, to being that person that I can talk to, break down to, and laugh with; they’re always there. Much of my time on Lunder was happy despite the fact that I was in my most vulnerable state. They made me laugh and made me feel at home when the cards seemed to be stacked the other way. To this day, they make my visits happy and something to look forward to. The people that have cared for me day in and day out have not only become my friends and but continue to be my biggest supporters and cheerleaders.

To all my nurses & nurse practitioners, I love you. Thank you for all that you do. You’re amazing

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Painful Reality of GVHD

I am in a few different support groups on some social media outlets. One of the groups I often read is the Graft Versus Host Disease group on Facebook and it’s often filled with tough stories of how GVHD is making people struggle. Occasionally I comment if I feel like I can help or just sometimes to let them know that I hear them and share their burdens and pain. This disease is a scary one as it walks a fine line and one that doesn’t receive enough attention or concern. For those of you who don’t know, GVHD is a complication and potential benefit many see in their ‘Days Plus’ post allogeneic transplant. Since the stem cells are coming from a different donor in this type of transplant and not yourself, there is a war created in the body as the graft starts to take hold. The side effects of GVHD are due to the body rejecting the stem cells or the stem cells attacking the body. Skin rashes, blistering, the inability to eat, vomiting, nausea, diarrhea, ulcers, jaundice, organ failure, and even death are all possible. But on the positive side, a little bit of the war is necessary and beneficial as it helps eradicate any remaining cancer cells from the body. Patients are started on immunosuppressant drugs to help prevent GVHD before Day Zero and continue to do so through recovery to control it. There are a few different drugs available, I took the drug known as tacrolimus or Prograf.

Yes, I took tacrolimus. Today was the day that my doctor decided that I’m ready to fully come off of the drug. Of course this is completely dependent on the fact that I need to keep doing well and my body doesn’t have a meltdown without the tacro but we’ve been leading up to this moment and hoping it’s going to go well. I had a little scare in January when we first started tapering it and I showed more symptoms than usual, but I’ve since adjusted quite well. Today I was over the moon with that news and was going to share it with my online group. And then I opened the Graft Versus Host Disease page tonight and saw a new post that was typed by a mother that read, “Just lost my Daughter to GVHD. I Love You …” (omitted her name). I read it twice and just started crying. Sometimes it still feels surreal that I’ve even gone through this whole crazy stem cell transplant process. I feel so great now that the pains and hard times feel like a distant memory. It scares me a little that I can so easily forget how different my outcome could be. Instead of eliminating my tacrolimus today I could be in a hospital bed fighting for my life while this disease tried to kill me. Reading that post and thinking about that sweet girl who lost her life to GVHD makes me feel like I’ve been punched in the stomach. It’s simply not fair. I know that life isn’t fair, but there are no words that you can say to justify it. All I could manage to write on the post was how sorry I was and that I was sending them love.

To say that this outcome for anyone is unacceptable is an understatement. This painful reality of what a stem cell transplant can turn out to be is the entire reason why I sign up to participate in LLS walks and agree to be a part of a campaign that raises thousands of dollars. Can you see that this sweet girl and I are no different? The only difference may be that my sister was a perfect match. I got my miracle yet she didn’t get hers. My family gets to celebrate another Mother’s Day with us all together, and that mother has to find a way to try to make it through the day without her daughter. My sister is my beautiful miracle. There are no words that could ever sufficiently express my gratitude. But we shouldn’t have to rely on miracles at all. It is time we relied on science. And we’re getting there, I know we are; I’ve seen it with my own eyes. Magic is happening, but it needs to happen today, not in 5 years, not in 10. And not only do we need cures for every patient that is being diagnosed as I write this and the every 3 minutes that comes after this post, but we also need better GVHD treatments that help patients that have been transplanted and are still fighting for their lives, or suffering from the nasty side effects of GVHD treatments such as steroids. It is time because it’s not fair. Everyone deserves the outcome that I’m so lucky to have.

People often tell me that I’ve downplayed my cancer, my treatments, my transplant, and all the little details. It’s not that I’m necessarily trying to downplay it, as it is that I’ve always felt that complaining wouldn’t help anyone, especially me, feel better. Things are what they are and right now I’m making it through this craziness. But I can’t take my miracle and not give back. I know that everything happens for a reason, and I honestly believe that part of my giving back is to share my knowledge and spread awareness to the world to help us get to that day of no more cancer.

So I ask everyone that is reading this to take a moment to be grateful for your health; to send positive energy to patients that are fighting for their lives; to send comfort to those who have lost someone to cancer; and consider donating just a few dollars to an organization that I believe in so very deeply. The Leukemia & Lymphoma Society is the one that is funding these researchers that are going to find us what we need.

http://www.mwoy.org/pages/ma/ma15/lbourdon

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Although I don’t know you personally, my heart is heavy with your loss and I carry it with me. I hope you rest in peace, SV.