So I just looked at the date and it is exactly three months since my last post. I never mean to let so much time go by (and I know I say that every time) but this time, I just couldn't bring myself to write. I was angry and sad, I was scared and frustrated and I just didn't have the words. But I've given myself time, gone on vacation, gotten back into my "real" life, and I am ready to share what has gone down since my last post.
Exactly 10 days after my last post, I met with my doctor about my scan results. Every scan since I finished radiation had been clean, so I didn't expect anything different about this set of scans. Until I got his phone call...this time something was different. One lymph node on the right side of my neck had lit up hot, small, but hot. (My original cancer was on the left side.) He called me in the afternoon and basically said he needed to see me the next morning, first thing. It felt like being called to the principal's office. I felt like I had been punched in the gut. Cancer is such a bully.
Next morning, 7:30 a.m., Steve and I sat in his office and looked at the pictures from my scans. There it was, a little tiny spot on the right side of my neck. My doctor studied the images, then examined my neck. The spot was small enough that he couldn't feel it with his fingers, but he was concerned enough to start the process to schedule surgery to take it out. There was a possibility it wouldn't be cancer but I knew as soon as I saw that glow exactly what it was. My biggest concern? We were leaving in less than a month for a huge family trip and I was going, no matter what. And this is why I love my doctor...he promised me that I would be on that cruise...no matter what!
Fast forward to July 5 and I was back at Kaiser for my third surgery...all I wanted was to wake up without a trach. I was honestly more worried about that than anything else. You all know I fought like hell to get that trach out, I'm pretty sure that would have been the straw to break the camel's back, so to speak. My anesthesiologist (who turned out to be the niece of the boy's neurologist!) was a lovely young lady (I think I'm getting old...so many of my doctors remind me of Doogie Howser who assured me she would do everything in her power to make sure that didn't happen. My surgeon explained that just like the first time, he would go in and take out the offending lymph node and walk it to pathology. If it was nothing, he would clean up the surrounding scar tissue, close me up, and that would be that. If it was cancer, he would still clean up the surrounding scar tissue, but he would also have to do a neck dissection and take out all the lymph nodes in the surrounding area.
After a harrowing start (because of all the scar tissue in my throat, I had to be awake getting the breathing tube in...I will spare you any more details than that!), my surgery was underway. The moment I woke up in recovery, before anyone could say a word, my hand was at my throat, checking to make sure there was no trach! (There wasn't!) My doctor was there and explained that, indeed, as he suspected, the lymph node was cancerous and he had to complete the neck dissection and remove more than 20 lymph nodes and scar tissue surrounding it. The good news was that the cancer was still encapsulated, which meant it had not spread to any other lymph nodes. The other good news...he was sending me on my cruise!
After a couple nights in the hospital, I was home. Considering that the first surgery I had was actually five surgeries in one, only having one incision felt like a piece of cake! My recovery at home was not too bad, except for not being able to lift anything or move my right arm much. I didn't need much pain medicine after the first night home and I was driving again and up to my old tricks within about two weeks.
And then we had to meet with my radiation oncologist and the tumor board. The process for the tumor board is that you are examined by the oncologist, she meets with the tumor board (via teleconference) for a few hours to discuss a variety of cases while you go to breakfast or hang out somewhere, then you go back and find out the recommendations and make a decision. My oncologist was dismayed to find me on her Monday morning schedule, as those appointments are reserved for tumor board cases. But we discussed it and she really felt that there would be no further treatment necessary at this point. She had read all of my surgeon's notes and agreed with him that because of the encapsulation, it would be best to watch carefully, but not subject me to any further treatment. So we went on our merry way, off to a leisurely breakfast without the kids, before we had to be back in her office to hear the results from the tumor board.
Two hours later, she greets us at the door with a grim look on her face. While she and my surgeon agreed to the watch and wait plan, other doctors on the board were recommending aggressive treatment...reradiation and chemotherapy. I had prepared myself for the possibility of chemotherapy, but I had been under the impression that I couldn't receive radiation again because I had already had targeted radiation therapy on my neck. She explained that RE-radiation pushes your cells past the acceptable levels of radiation for a lifetime limit and that the risks and side effects of reradiation were more severe than the first time around. I won't get into all the risks here, but just know that it was some really scary shit she described. She was not a fan now because if I do have another recurrence in the same area, surgery is no longer an option and if I have already done the reradiation, she has absolutely nothing she can do. Basically, she wants to save it in case of a true emergency. But, the decision was mine (and Steve's of course) to make. Watch and wait or throw everything and the kitchen sink at it and hope I don't die in the process. Crap. Not a decision I ever wanted to have to make.
So we went home and cried. I cried a lot. And we talked through all the possibilities. We shared these conversations with a few close family and friends who all agreed the choices kind of sucked. And we basically decided that unless my surgeon felt differently after the tumor board, we were going with watching and waiting. So, two days later, we met with him and together, made the choice to be cautiously optimistic and careful and watch and wait. I made peace with the decision. If something comes up on my next scan, we will deal with it, but at that moment, I just couldn't see putting my life at risk. Do I wonder if it was the right decision? Of course. I worry about it every single day. But I had to make a choice. I am choosing to live every day as if I don't have cancer. That is my only option, other than spending my days curled in the fetal position, crying. And if, someday, the other shoe drops again, and I hear those words again, I will cry and rage and bargain, and then, once again, I will pull up my big girl panties and deal with it. Shortly after we found out my cancer was back, I was having a text conversation with one of my besties and she said "Cancer is a real asshole!" My reply? "Yes it is, but I'm the sparkly bitch who is going to beat it!" I believed it then and I believe it now.
I know this post is long, so I am going to bring it to a close. I know I say this at the end of every post, but I do plan on blogging more often. I am also working on how to bring my older posts over from my original blog site, but of course, that is a process, so bear with me. If you haven't been with me from the beginning, you can read more of my story at www.sparklesandspitballs.blogspot.com or on my Caring Bridge site if you want to go waaaayyyy back!
Thank you all for being here and following my story. Your love and support and kindness and prayers and sparkles mean the world to me!
Love and sparkles to you all,
Happy Father's Day to all the dads and grandpas out there, and to all the moms and grandmas who play that dad role to so many kids. To my hubby, you are the glue that holds this whole thing together, without you, we would have burned out light bulbs, spiders on the ceiling, and much less laughter in our world. And to my dad, even though it has been ten years since we spent a Father's Day together, know that I love you and miss you. But don't worry Daddy-O, that little blonde one you sent, the one just as naughty as you were, he reminds me of you every single day.
On to the birthday celebration...no, it isn't really my birthday, at least, not my original day. Nope, it is my second birthday, the second anniversary of my last day of radiation, the end of the treatment and the beginning of my recovery. It is hard to believe that it has been two years. Some days it feels like just yesterday and other days it feels like it was a whole lifetime ago.
A few weeks ago, I was having a conversation with someone about whether I was going back to teaching. I told her I wasn't, that I was working on completing my paperwork for permanent disability retirement. She said, clearly without thinking, but really without any malice, "You are so lucky." Talk about an awkward silence! I share this, not because I want to call attention to her or make her feel bad (I honestly have no idea if she reads this blog) but because her words stuck with me. No, my reason for retiring does not make me lucky. But in many, many other ways, I am lucky. I am healthy-ish. I still have run ins with the side effects from my surgery and the radiation, but mostly, I have adjusted to the new normal that is my life. I have a fantastic husband and amazing kids and a very special relationship with my mother. I am building a business that I love and I get to be creative every single day, while at the same time I get to be a stay at home mom and manage all the craziness of our lives. I have met people through this blog and through my business who inspire and motivate me more than I could ever have thought possible. I am blessed with friends who love me enough to put up with my constant barrage of ideas and what-ifs. (And who let me be my true snarky self whenever necessary!) So yeah, I am lucky, just not in the way that she meant.
To anyone reading this who is in the midst of cancer treatments, please know that you can do this. I know the days are rough and the nights are rougher. And yes, it will get worse before it gets better. But it will get better. Slowly, incrementally, but definitely better. You will have setbacks and you will get frustrated, but you will get there. And someday, someone will tell you how lucky you are and you will stop and you will think "Yes, yes I am!"
Love and sparkles to all of you,
Where has the time gone? I feel like I say that all the time...I look at my kids and just a minute ago they were babies and now the baby is five and getting ready to graduate from preschool and start Kindergarten! How in the world did that happen?
Except for the girl becoming a Bat Mitzvah in November (and a teenager, let's not forget for a moment that we have a teen in our midst!), life around the Lipson house has been pretty normal...which is to say super busy! I laughingly call myself the "Muber" as I feel like I am in my car more than anywhere else. I'm sure this is a trend that is not going to change as the boys find more activities to involve themselves in and the girl just adds more and more to her schedule.
Quick update on the kiddos: As mentioned above, the girl is very much a teen. I can literally hear her eyes rolling in her head. She is moody and snarky and short tempered and lovely and sweet and funny, all in the space of about an hour. That being said, we are super proud of her. She is working hard in school (where this kid gets her motivation is beyond me...she is a much better 7th grade student than I remember being!) and her grades are amazing. She puts a lot of pressure on herself to do well, so I worry a little bit, but I think she can handle it. The boy is finishing up 2nd grade with a bang. He is reading a lot (at least, when I can get him away from a screen), loves Pokémon (sometimes I'm not sure what language he is speaking to me!), and is looking forward to the next session of his running club. This kid is fast! He is built like a long distance runner...we are thinking cross country may be in the works for him! The baby, or I guess I should call him the littler boy, is a force of nature. We marvel all the time at how he was such a mellow baby...no one would EVER call him mellow now! Like I said before, he is getting ready to graduate from preschool and is definitely ready to move on to Kindergarten. He is interested in music and has expressed a desire to learn piano, guitar, and drums. We think he may also have a career as a professional wrestler!
On the subject of preschool...phew, this is going to be a tough graduation. I know I keep saying I am ready, but it is still going to be emotional! We have been a preschool family at our Temple for 12 years...12!!! It is going to be so strange not being there everyday! But I am so thankful that each of my children was given the opportunity to learn at such an amazing school. As I tell nervous new parents at the start of each school year, this preschool turns out great human beings. I'm sure I will have lots more to say on this subject as graduation looms, so stay tuned!
Last but not least, an update on Sparkles and Spitballs. I have been working hard the last several months on growing the business side of things (obviously to the detriment of the blog!) I am still selling on Etsy but am also working on the ecommerce page on this site. I have done several small boutiques (thanks to those of you who have come to see me!) and am now branching out to larger boutiques and craft fairs (more announcements coming very soon!) My product line has changed and grown and been refined and improved. I am learning all about how to run a business (which is very, very different from running a classroom!) and how to balance my time between my business and my family, which is much harder than I thought it would be. I am constantly being forced outside my comfort zone, which is a very, very good thing. In the next few days, weeks, and months there will be lots of changes and additions to this site, so again, stay tuned! The picture at the top of this post is in my new line of wood signs and home décor...and is one of my personal mottos these days...it sure helps on days when there are other choices to be made!
This post is longer than I had planned, but I guess catching up on eight months will do that to a blog!
Please know that I am thankful to all of you for being here with me on this journey and I just can't wait to see where the next chapter goes!
Love and sparkles to you all,
I've Been Neglectful
I have been a neglectful blogger. But I won't apologize. Okay, maybe I will, but I'm only a little sorry. Yes, I promised to blog more often, and no, I didn't follow through, but it's only because we had such an incredibly busy summer here in Lipson Land, which is a very, very good thing. No lying around in bed for this mom! Dance recital, camp for all three kids much of the summer, Mommy Camp at home for all three kids at the end of the summer, a big road trip...our first as a family of 5 (success!!!), and then back to school. I thought there would be a break in the crazy when the kiddos went back to school (what could I have been thinking???) but alas, my time sitting at home eating bon bons has not come to fruition. No, three kids in three different schools means three drop-offs and pick-ups, three back to school nights, two sets of homework to manage, swim lessons, a new Cub Scout pack (this dance mom really wants to bling that Cub Scout uniform!), and of course, we thought we would add some sports activities to the mix, so the middle kid is adding a running club and the little is taking a class that teaches him the basics of tball, basketball, and soccer.
Add to all of that, the girl's Bat Mitzvah is now less than two months away and of course, you know I can't go simple and easy on that one! Without revealing too much (there will be many, many, many pictures to follow in November!), just imagine a house awash in tulle and glitter. Then sprinkle on a little more glitter. And then there is the little matter of my Etsy business...I'm proving to be much better at the creative side than the business side, but I'm slowly learning and growing. A little too slowly for my taste, but I will take what I can get at this point.
Oh, I forgot to make an official announcement. Here goes: I am officially retired. Well, sort of officially retired. After a very lengthy paperwork process (I'm talking 50+ pages of application and documentation), I have qualified for Disability Retirement through STRS (State Teachers Retirement System). Technically it is only for this year, and then I have to go through a modified process again to make it permanent, but I don't think there will be a problem with that. They had warned me that it could take up to six months to process my application...once they had all my paperwork and medical records (all 3000 pages of them!) it only took about two weeks to get approved. As my doctor said, "If anyone doubts you, stick out your tongue and show 'em your arm!" This is certainly not the way (or the timeline) I had pictured my retirement, but after the last two years, I will take it! I've known for a long time that I wasn't going to be able to go back in the classroom, it was just a matter of really admitting to myself that my teaching career was over. The saddest part for me was going back to my classroom to pick up some stuff. Now, mind you, Steve made me promise that I would not bring too much home. I was good, I really was. Eighteen years of books and materials and furniture and endless other treasures...I brought home one crate full of personal files, special books, pictures, and gifts. Other than that, I gifted (not entirely certain it is really a gift!) the rest of my things to the teacher taking over for me. And then I walked away. A piece of my heart will always be at that school, but it was time to move on.
So that's the update for now. I have lots more to tell, but it's about that time...drive time. Heading off to the middle school, then the dance studio for an hour, two stops to pick up the boys and maybe, just maybe, a quiet Friday night at home. I would like to stop being so neglectful of my blogging and my shop, but I can't make any promises. This girl has a life to lead...and bon bons to eat!
Wishing all of you love and sparkles...and a really wonderful weekend!
I know I promised to post results as soon as I got them, and I did, on Facebook, because I was out of town. So, for those of you not following me on Facebook, here is my news...I am officially and totally cancer free. No, wait, that should be bigger and more important looking...
Today is my first birthday. It has been one long crazy leap year since I finished my last day of radiation. One year since I last had my head strapped to a table. One year since I heard the whirring and clicking of the radiation machine. One year. I remember my radiation tech saying to me that last day, just wait a year, this will all be just a bad memory, your life will be so much better in a year. I didn't, wouldn't, couldn't believe her that day. But you know, she was absolutely right.
My life today IS so much better than it was a year ago. As I sit here writing this, I realize how very normal things are around here. The girl is at the dance studio, the boys had their swim lessons this morning and are now entertaining themselves nicely, but I'm sure there will be arguing soon. I would almost say things are boring, but there is a quiet joy in the normalcy. I am busier than I ever imagined I would be again and loving every single moment of the busy.
Two weeks ago I had my one year follow up appointment with my surgeon. He assured me that all the residual side effects I was experiencing were, indeed, normal. Radiation being the gift that keeps on giving, I will probably forever have sensitivity where my flap is attached, right at my salivary gland. I will forever have to deal with the dry mouth, especially if I talk a lot. My taste buds, while certainly not perfect, are tolerable, even if I only get to taste the first few bites of any given meal. The muscles in my jaw and my neck will probably always need stretching, massage, and periodic sessions with the physical therapist and my range of motion will never be the same. He is hopeful that my hearing loss won't progress any further (at least not due to radiation...he can't do anything about my advancing age!) but does not think my ability to be in loud spaces without being uncomfortable will get much better. And of course, my ability to talk for long periods of time without losing my voice or having my jaw lock up is gone for good.
The last thing my surgeon and I had to discuss was my employment status. He said the words that went right to my core...permanently disabled. Huh? This wasn't part of my plan, but there it is, a label. I had to take a few days to let it sink in, to finally admit to myself that I wasn't going back to my classroom. When it did sink in, I realized that I was really okay with it, that I have filled up my life with my family, my friends, new adventures, and me. My new life, my new normal, is so good, so much better than I imagined 366 days ago.
A week ago I had a CAT scan and in a few days I will have a PET scan. I will spend a few restless days waiting for word from my doctor, letting me know all is good. As soon as I have news, I will share it here, I promise. But until then, I'm just going to celebrate my first birthday and my new, utterly boring, normal life.
Before I start on the whole Mother's Day post I have floating around in my head, I first need to offer a sincere apology. It has been more than two months since my last post...not that I haven't had a lot to say, I just don't seem to be able to focus on any one thing, and sitting long enough to write an entire blog post appears to be out of the realm of possibility. But I am committed to this post tonight. I have tied myself to the chair and will not leave until this post is, well, posted!
A quick update on life in general...yesterday is one year since I started radiation. I feel better now than I have in a year. Not as good as I did the year before that, but I am trying to learn not to compare my new life to my old life. Some days I do better than others. Some days the pity party is bigger than others and some days I am just thankful to be standing.
We have a new addition to our family. (Stop laughing...I know what you are thinking! No, this is not like the last addition to the family.) This is Einstein...isn't he handsome? He might also be the reason mayhem is a part of the title of this post. He is a 9 month old lab/dane mix who is just a big squishy, slobbery love bug. Unfortunately, the two senior citizen canine members of the family don't particularly appreciate being squished or slobbered on. We're working on that! Needless to say, adding another boy to the mix in this house leads to some very loud interactions! But I have been calling him my rehab dog. Exercise never having been my thing, this is a dog who needs walking. Every morning, 5:30 a.m., there is a cold nose in my face, reminding me it is time to hit the road. Some walks are longer than others and some get cut short when I don't feel great, but we are out there, and for that I am thankful!
So, on to Mother's Day. It was a lovely day today. My darling husband, who is not yet the biggest fan of the above mentioned puppy (did I mention he didn't really want a puppy? He wanted an older dog, perhaps one who had grown out of the craziness of a lab puppiness, but I fell in love with that face and there was no discussion of not adopting...) got up and did the morning walk so I could sleep in. Until 8:30!!! Wow! Then Mom and I went to see Mother's Day (an actual movie, live action, not animated or anything!) and then there was crab for dinner (I couldn't really eat it, but Mom, Steve, and the girl who will eat anything all enjoyed it greatly!) After dinner the kiddos showered me with presents, all bearing their pictures. Only a few tears were shed, mostly by me!
I've been thinking all day today about how thankful I am for, well, just for being here. And how thankful I am for all the moms in my life, those related to me by blood or by marriage, those bound to me by a lifetime of friendship, and those who have become my friends more recently. Moms who teach me through their challenges and struggles and survival and successes. Moms who care for my children as if they are one of their own. Moms who laugh and cry with me, who get angry and indignant and bitchy with me, moms who tell it like is, not just what I want to hear. Moms with a husband, moms with a wife, single moms, soon to be single moms...You are all part of my family, my pack, my crew, my life and I would not be the mom I am today without each and every one of you. So thank you for being you and for being a part of me. Thank you for the ear, the shoulder, the laugh, the text, the email, however it is you are there for me, thank you. I love all of you in your own special way.
Thank you to my children on this Mother's Day. I learn something new from you every single day. Before you, I never knew how full my heart could be. You give me a reason to fight.
Thank you to my mother. I am lucky enough to have a really short commute to your door and my children are blessed by your presence in their lives. We may not always see eye to eye, but we always see heart to heart. I love you.
Thank you to my mother-in-law. I don't always tell you how much I appreciate your generosity of time and spirit, but I do truly! Thank you for raising an amazing man...I couldn't ask for a better person to share my life with.
And speaking of which, last but certainly not least, though he is definitely not a mother, thank you to my husband. You are the best person I know. You kept this house together when I was falling apart and you did it with no complaint. You took such good care of me and the kids that I don't really think they even knew how sick I was. You were father and mother when I couldn't be and made it okay for all of us. I love you and will forever be grateful that I took that student teaching position.
Love and sparkles to you all,
So, you may have noticed a few changes to my blog...the biggest change of course being it has a new home!!! I'm so excited to announce that as of a few weeks ago (I'm a little slow at figuring all this out), Sparkles and Spitballs has a new home. Now all of me is here on one site...you can read my blog, do a little shopping, even learn a little more about cancer (eventually...)
The second major change is that I am going to attempt to shift the focus of this blog. You all know it started as an outlet for me during my treatment and recovery. I will still be talking about cancer (don't make me remind you to get checked often!) and it's effect on me, the family, etc., but I hope to broaden the scope a bit. I was reading all about blogging and I noticed that blogs all seem to fit into one category or another. But I don't feel like I fit into any one category. So, defying all the blogging rules, this will be a little bit of a lifestyle, mommy, home improvement, craft and cooking tutorial type blog, with some product placement thrown in for good measure. So pretty much, whatever happens to be on my mind that day. I am a little nervous about this...what if I don't have anything to say? (Ha! Anyone who knows me knows I ALWAYS have something to say!) Or what if I'm not interesting? This year is all about taking risks, and this is a big one for me, making this change. Hopefully it will be a good change, fingers crossed!
Speaking of product placement...I finally have some new products up in my Etsy shop. I am super proud and excited about them as they were the original ideas that launched my shop. They are very personal and dear to my heart, so much so that it took me six months to get them just right. They are everything I love...important words, bright colors, sparkles, and truly come straight from my heart.
Well, the dog has just informed me that it is way past his bedtime and I am disturbing his beauty rest with my typing. Thank you for being here with me...without you I would just be typing to myself! Have good sleeps! (And don't forget to check out all the new products...I'll post more pictures tomorrow!)
Love and sparkles,