Tryin’ To Reason With Hurricane Season

January 14, 2010 at 9:19 am (Life goes on)

I’m feeling a little woozy today…the fuzziness is definitely settling in.  I’m so glad that it’s hitting later in the week than it did with the last round.  I hope that the gallon of water that I’ve been drinking each day helps it flush a little sooner too…what a nice surprise that would be.

Thank you for the lovely notes and emails and comments here.  I am glad that what I’m trying to get across is finding it’s way to you all.

I’ll probably be a little scarce over the next few days, but I’ll post once I can get a simple sentence together again.

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All I have to do is look around and see where my friends may be

January 13, 2010 at 5:09 am (Family & Friends)
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I know that I have spoken of the various communities that I belong to around here and how amazing and supportive they have been throughout this entire ordeal. Most of these communities are local, they are a network of friends, old and new, that I have had from high school up through meeting them at the boys’ school this year. But there is one community of friends that I need to tell you about, because they call me out and don’t let me hide.

I have a group of friends, we call ourselves Hussies, but to my family and friends in my local, everyday life, I call them my “online girls.” I met these girls through an online fertility site about 7 years ago. As you can probably tell by my approach to my cancer, I like answers, and I like taking control. So, when C and I decided to have a 3rd child, I went into hyperdrive and decided that since I was over 35, I was going to track my temps and body fluids so that I could get fertility drugs the minute we hit the 6th month mark of trying to conceive. I found a website that was setup to track these ovulation-indicators and spent 10 minutes a day inputting my temps and body cues to determine when I may be my most fertile (sorry Dad, I know you’re reading).

To help support us while we were waiting for our positive pregnancy tests, there were these message boards for us girls to support each other in our journeys to parenthood, for the first time or the 3+ time. Somehow, I began following a group of women who were going through struggles with infertility. Since I didn’t fit the group criteria (for Pete’s sake, I was pregnant with baby #3!), I started “lurking”, and following their discussions without saying anything. I learned so much from them, and their willingness to be open about their medical procedures, drugs, insensitive comments from people already living the dream that escaped them. I learned from them, long ago, that sometimes, no matter what you want of your body, it will fail you.

As some of these girls became pregnant, they set-up a sister board for the pregnant ones to share about their new adventures, and there I would sometimes jump out and announce myself as a “Lurker” and post congratulatory messages or offer advice about doctor’s appointments, childbirth, all the stuff that I knew. I had some of the answers and was able to share them with the newly preggo girls, kind of like What to Expect, but hopefully without all the fear mongering.

Somewhere in all of this, maybe about a year or 2 in, one of the girls on the preggo board told me that I had been around long enough and that I should stop lurking. I made the leap to a full on member, but primarily stayed on the preggo board. At the same time, the original website was becoming a little more censored, and our group of 60′ish was worried about being able to stay together. So, we bought our own website and began posting there.

Through the years, our numbers have dwindled. People have fallen out of communication, chosen to leave, been asked to leave. We are all over the world: UK, New Zealand, South Africa, but most of us are US-based. We do not discuss politics or religion on our board…it is a steadfast rule. We have taken trips together, and had girls weekends. Right now I think we’re about 30 strong. I am happy to say that every one of the 30 of us have had at least one child, but some are still struggling as they continue to create the family of their dreams.

As you can imagine, in our little group, we have also faced devastating loss. There have been failed Clomid/IUI/ICIS/AI rounds, many lost babies from miscarriages, and 3 moms lost little boys who were stillborn. Three of our girls lived through the aftermath of Hurricane Katrina. One woman’s young, loving husband collapsed and died from an unknown heart defect at 32. Another is helping take care of her sister who recently fell down the stairs and bruised her spine so badly that she needs to relearn how to do most daily activities we take for granted. We have weathered infidelity, job loss, parental death, heart transplants, childhood diseases, and now cancer.

The reason I tell you all this is because we have shared some of life’s greatest struggles, and I would do anything for these ladies. They continue to support me and my family…I cannot hide from them, and they call me out and ask me the tough questions. So, I’m going to share some of the nitty gritty of what I told them this week after I told them about the metastatic spot on my sternum. This is the real deal…my language is shockingly foul, but I’m leaving it uncensored.

Question: I read your blog but for some reason can’t post comments. So know that I’m reading. My main question is how are you doing? Like emotionally. Are you ok? Spill the beans if & when you need to.

I’m glad that you’re reading, and I wonder why you can’t post comments. If there’s anything else, ask here. I’ll answer.

I got the call from the doc on Thursday while home by myself. All I heard was sternum involvement and was off on a huge crying jag for 4 days until I met with her today. It’s always a good thing to have an extra set of ears in the exam room when going over something like this. C asked some questions, but I’m pretty good when I get Dr. A’s ear in a face-to-face. She is a no bullshit kind of broad, and if there was something that I needed to know, she’d give it to me kindly, but directly. So, I feel much better now.

I am not looking forward to any of it. Fuck, I never wanted any of it in the first place. But if it’s a manageable condition, and I get to see my kids grow up, then I am okay. Truly, I can manage most of the sadness by thinking about the future. I don’t spend a whole lot of time dwelling on what’s going on right now. But, if you take away my hope for a long future, I fall the fuck apart. I can’t look at the boys or C without sobbing. I find no solace in the thought of life going on…because all I think about is all that I’ll miss. I do have a few plans in place if I need them (buying enough birthday cards for each of the boys until they’re 40, leaving a video singing (NOT pretty), but I sing them “You are my Sunshine” often and to bring them comfort, etc), but haven’t yet acted on any of them…other than buying a little flip camcorder.

I know that there are no guarantees, but for now, Dr. A is convinced that we’re playing with the same deck I started with in September, so as for now, the tears are dry again, and I’m just trying to survive chemo week without losing my mind. Trying loads of water this round.

Question: Does it ever feel crazy-surreal to say things like “I should have my third pair of tatas by my birthday in October”?

There are times when I am definitely on autopilot. The surgery part doesn’t really scare me because I’ve been through it before, and quite frankly, my first surgery was more invasive…so I consider this “easy.” I am a little concerned about radiation since I’ve seen some horrible post-rads skin issues. I just have to remember to put special chemo moisturizing cream on 2 times a day. And I’m bad about that anyway. I think I remember face lotion about once every 3 days. The part where I get really messed up is the fear of the unknown. When I get new news and it shows more disease, I can’t help but thinking that this isn’t really my life. Or how unfair it all is. I’ve wished this away, I’ve wished it on other people who I deem more idiotic (driving behind the Ciroc ad with P Diddy, I was wondering why he didn’t have it). Not some of my nicer thoughts, but my thoughts nonetheless. I’ve thought that the results were wrong. I’ve thought it was all a dream, that a good night’s sleep would clear up, but a good night’s sleep is rare these days.

On the flip side, I also sometimes forget I’ve got cancer at all during that 3rd week of chemo. Typically I feel like myself, and food begins to taste right again. Sunday night I was up watching infomercials at 4 and there was a new product for curly hair. I was so excited to order it, and then got so annoyed that I couldn’t try it, like RIGHT now. So, sometimes it’s all I can think of (like Thurs-Monday) and then there are times when I almost forget.

So, there you have it. Another piece of my life. Another place where I turn to for support and love. To all my Hussies out there, I’ve said it before, but it’s worth repeating. You girls have courageously and generously shared your journeys, and have taught me how to share mine. I love you all.

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But this is the life that I was given, so I have to live it to the fullest

January 11, 2010 at 10:25 pm (Cancer 101, Treatments)
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I got a call on Thursday. From Dr. A. Ugh….

I had a PET scan on NYE day. A PET works like this. In cancer, cells begin to grow at a much faster rate. PET works by using a small amount of a radioactive tracer in combination with a sugar molecule. So, I get this shot of radioactive stuff and sit in a room, not doing anything (no reading, moving, talking…nothing to increase my metabolism) so that my body can process this stuff through for an hour and the body can begin to metabolize the sugar. (It’s actually one of the best parts of any test I have to do. I sit in a recliner, in complete silence under warm blankets for an hour). The radioactive tracer emits signals as it travels and eventually collects in the organs targeted for examination. If an area in an organ is cancerous, the signals will be stronger since more glucose will be absorbed in those areas. Normal cells do not have a raised level of metabolism, but cancer cells do. As a baseline, my oncologist said normal cellular metabolic rates are 1-2.

My original tumor was an 11.5 which was quite active and hot. This is now at about a 2.5. Huge, great news! YAY, we know that the therapies are working.

However, we also got some other news too. We found a spot which didn’t show on the original PET scan which is likely a metastasis on my sternum (breastbone). The doctor said that this is not unusual, and that it’s probably not new, but it just didn’t show originally. The chemo and Neulasta (which is a white blood cell stimulant that works in the marrow of the bone that I inject the day after chemo..blah, blah, blah) are making the marrow metabolize a lot more than it was, and so it’s now showing up. Her interpretation is that it’s showing either clearing disease or that it isn’t a metastasis (from now on I’ll call it a met) it’s just high level cell activity from the Neulasta.

This makes it really easy to determine the next course of treatment. I will start taking a new drug by IV with my next and LAST chemo (YAY!) called Zometa. It’s like Fosamax on steroids and will help repair the bone issues if it is a cancer met. Also, there is some indication that Zometa somehow works to strengthen the bones so that it is difficult for future mets to occur in the bone (also a YAY). It’s a short infusion which I will continue to take for 20 minutes every 6 weeks probably for the rest of my life.

I will also definitely be having surgery to remove my reconstruction. This had been up in the air, but with this newest wrinkle, the oncologist is onboard for a complete removal (i.e., I am having a second double mastectomy). Surgery isn’t set, but will likely be before mid-March. Unfortunately, I will not be doing immediate reconstruction. I am a lot freaked out by this. Seeing my body with no breasts at all was the one thing I didn’t want to deal with the first go round. Of course, if I am blessed by 50 more years, what do I care if I run around with no tits for a few months.

After I heal from surgery, I will begin radiation (I’m guessing about 4-6 weeks after surgery, so beginning of May). This is going to happen in at least 2 areas, the breastbone and the original tumor site. I don’t know if there will be any other spots, but wherever they say, I’ll do it. As Dr. A said, she considers the radiation the mop-up process for this kind of chemo protocol. I will probably have 6-7 weeks of radiation, every weekday for about 10 minutes.

I will have some time to heal and then we will be able to begin the reconstruction process. If I do 7 weeks of radiation, I will be able to do the expanders in July, but boys are going to sleepaway, and I think that Chris and I are going to take a vacation while they are gone. So, middle of July will be my target date. With the new mastectomy, the doctors will take the majority of the skin, so I will first have something called an expander placed. This is a balloon-like bag with a port so that the doctor can fill it with saline each week. This will stretch the skin and create space for an implant to be placed once we stretch the skin enough. I figure this will take about 8-12 weeks.

Hopefully, I will have my 3rd set of tas by my birthday in mid-October.

Believe me, I know that I just dumped a whole lot of information. I do my best to educate on the process as well as give you my personal information. I find that the info without education is pointless.

As always, you are free to ask anything, I am here to answer your questions. It makes me a better patient because I learn what questions to ask, if I don’t know the answer already.

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I’m tryin’ to tell you people, try to tell you how I feel

January 1, 2010 at 10:07 am (PSA)
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I thought Foghat lyrics would be appropriate on many levels. The first, is obvious, they hit the topic between the eyes. The second is because the name Foghat is pretty much a synonym for chemo-brain…at least in my experience anyway.

I said I would write a post about the fog. I don’t want to do it because I hate living in it, but I think it’s important to try and convey what that experience is like. Consider it my first PSA (public service announcement) for the new year.

Imagine you are at the beach. It is a beautiful, warm, clear summer day. The breeze is warm, the water is crystal clear, and the skies seem to reflect the beauty of the water. You decide that you want to take a dip, so in you wade. The water is perfect, refreshing but not shocking. You walk out until you’re in chest-deep, close your eyes, breathe in that delicious, salt-tinged air and let out a sigh. Then you open your eyes and notice the dorsal fin headed straight to you.

And you try to run, but you’re in the water and you can’t. You panic! Your brain is racing but your body cannot. You can’t escape and you experience the disconnect between your wants and your abilities so clearly. It’s these feelings that are what my experience of chemo brain is like.

So, while this is a physical example of chemo brain, I hope it gets the point across. I feel like my brain is moving through water. I see everything, but I can’t quite grip it. I know what I want to say, but I can’t get the words out. My mind knows where it wants to go, but it wanders and is cloudy. And after a few days of this, I am depressed and sad because I can see the shore, but I just. can’t. get. to. it.

With the advances in medicine, the physical aspects of chemo are relatively benign (haha, I have nothing if not my sense of humor) given the poisons that are being pumped into the body: I am nausea-free 99% of the time; the heartburn is controlled by Prilosec OTC and Tums; the body aches go away with Extra-Strength Tylenol; Unisom allows me to sleep when my mind races; the hair is gone but Lola lives on. I have an amazing support system to help with the kids when I cannot find the energy to get off the couch for that first week.

These mental and emotional issues are the ones that leave me counting the minutes to February 8 (last chemo day plus a week). I feel like a wimp complaining when those before me had to deal with these side effects plus the physical issues. But, I’m writing about my experiences, not theirs.

As of now, I am still debating the use of antidepressants for these last 2 rounds. I don’t know if they will help, only because they’re not intended to clear out the cobwebs. So my thought process is that I’m still going to feel all kinds of loopy, funky, disconnected, but I won’t be upset by it. It’s not going to help with the fog, which is what I really, really want. And, for the 3 days of the upset each round, I don’t know if I want to be on a medicine full-time.

So, there it is. I hope that this helps explain the phenomenon of chemo-brain to those fortunate enough not to have it. And as is said at the end of most televised PSAs:

…The more you know…

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She was a showgirl, with yellow feathers in her hair

December 31, 2009 at 9:17 am (Family & Friends)
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Congratulations to Amy for submitting the winning name, Lola. We haven’t gotten used to calling Lola by name, but I’m sure we will. And thank you to everyone for taking your time to come here and post. It was a wonderful diversion and made more special by all of you playing with us.

Now for the apology for taking so long to get back on here. Last week, without putting any sugar-coating on this, was awful, and it took a lot longer for me to get back on my feet. I’d say that the fog descended on Wednesday and didn’t completely go away until Monday evening. One of these days, I’ll write a post about the fog, but that’s for another time.

After herceptin on Monday, we did sneak away with the kids for a few days. We took the boys to a wonderful bed and breakfast in Asheville, The Bridle Path Inn for the night. Fred and Carol, the owners, were delightful, and we had such a good time being back in that great city. As an added bonus, we had dinner on Monday night at my favorite veggie restaurant, The Laughing Seed. We had let Fred and Carol know that we were vegetarians, so our breakfast was prepared meat-free too. Fred made some delicious applesauce with added cranberries, which I may have to try when I make my pear-applesauce next time. We also had eggs, cinnamon buns, watermelon with dill(!) and pumpkin loaf.

Shortly after breakfast, we left for the Great Wolf Lodge in Charlotte. This is an indoor waterpark which was perfect for the boys to run, play and wear themselves out. I called some good friends who live in Charlotte, and S and the kids were able to join us for dinner on Tuesday night. Thank you for driving out to see us, S. I am so happy we were able to catch up for a bit. By happenstance, we ran into a neighbor, so the boys had a few friends there to run and swim with as well.

We headed home yesterday and that brings us to today, New Years Eve Day. My cousins and their families are headed in from both Savannah and Orlando to celebrate the holiday with us. J’s 10th birthday is on Saturday, so the family will be with us to eat cake and watch my oldest enter the next decade of his life.

And, as is fitting on this last day of December, I wish you all a happy, healthy 2010.

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There isn’t anything I wouldn’t do for you, we stick together and see it through

December 21, 2009 at 9:53 pm (Family & Friends)
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I am sitting in my recliner at chemo and wondering how life happened before the miracles of modern technology and medicine. I’m tired and really should close my eyes to sleep, but I’m down to less than an hour in the chair and it just doesn’t seem worth it.

I did speak to Dr. A about the depression on Saturday/Sunday and she offered 2 options. First, she doesn’t think it’s the anti-emetics, instead she thinks it’s likely the steroids. So, I can either go on an antidepressant all the time (which I really don’t want to do to manage the 2 days a cycle that I’m feeling blue), or we can try to lower the steroid dose. We are going to try that this cycle and see if that makes a difference. Unfortunately, Dr. A did indicate that this is a fairly common issue for people going through chemo. But, with today being cycle 4, that means I’ll have only 2 more rounds left. Two rounds left. So effing excited that today is 2/3 done.

Next, thank you so much for your name suggestions for my wig. I have shortened the list down to 7 names. I will see if I can shorten it even more tonight. Tomorrow I will give the boys the top contenders so that they can pick the winner

Goodness, I’m skipping all over the place today, and while I hate to, I’m going to end on a well-meant admonishment, because it’s my blog, and I can. I really hate how much people are keeping from me. I’m not talking about my doctors, I’m talking about my friends who don’t want to trouble me with things going on in their lives.

Like my friend J who has taken my youngest for more playdates than I care to admit. And who, about 2 weeks after the fact, I found out was in the hospital for 7 days with cellulitis. I don’t know whether it was a week I could have helped out too much or not, but I would have made an effort to take her son for a play date, or at least sent a meal over.

Then, there’s another family who I just found out that the Mom is having some health issues and will be out of town for upto 2 months. And, while there are things that I can’t or wont do, there are certainly things that I can help with: sending a meal or taking their kindergartner for a playdate, or something. People have been so generous with us, I want to give back.

I’m not offering to overextend myself, or do something that isn’t realistic or dangerous to my health. But really, especially on weeks 2 and 3, I feel mostly normal, or at least “new normal.” I would love to help and to do for others. I would love to give back to my friends and the communities that have given us so much.

Please let me decide what I can or shouldn’t do. Include me, and let me feel like I’m part of your community, able to give back. I promise I will be responsible for myself: I am with directing my healthcare, and I will with accepting the agreements that I make. Most of you have asked what you can do to help. There it is. Let me be a part of your lives as you’ve made yourselves part of mine.

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Name My Wig Contest-CONTEST CLOSED

December 18, 2009 at 11:26 am (Contest)
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It is now 12:04 am on Monday morning in Atlanta. Contest is closed. Thank you all for your entries. I will start going through them in the afternoon after chemo.

Really, thanks for so many laughs. You made my weekend.
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First things first, that is not a song title.

Today, I am holding a contest for all my readers.  At the suggestion of my friend Sooze, I am opening up the comments section for you to name my wig.  I figure that he/she/it will be a member of the family for at least the next year, and should have it’s own identity.  Of course, I hope you will play…don’t worry about being irreverent.  I’m here sharing my journey to have fun and to live life fully…and a lot of time that means laughing at things that you might think are off-limits.  Laugh with me, please.

A few pictures of me wearing it for inspiration:

A few rules:

1. The name must be something appropriate for me to use in front of my kids.  If it’s a double entendre, that’s fine, but don’t make it something obscene, please.

2. If two or more people suggest the same name, the person who submitted it first will be credited with the name. If that name wins, then the first person who submitted it will get the prize.

3.  Entries are open to anyone, whether I know you personally or not.

3. Comments will be open until Sunday at midnight (east-coast time).  I have too many friends who will not be online during Shabbat, and I want to include them too.

4. Only one entry per person, please. And only one name in each entry too.

Winner will be chosen by my boys after I down-select the top 3, and will be announced sometime on Tuesday when I get my bearings after chemo #4 (2/3s done on Monday, yay!).

A $25 gift certificate to Target will be sent to the person who submits the winning name.  Make sure that you include your email address so that I can contact you for your mailing address if I don’t already have it.

Finally, just so we’re perfectly clear, Target is NOT providing any kind of sponsorship of this contest. This is something that I am doing on my own, and because I want to thank you all for laughing with me as I navigate this crazy cancer path.

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You’ve either got or you haven’t got style.

December 17, 2009 at 10:22 pm (Life goes on)
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I can’t believe that I’m actually admitting this, it’s so embarrassing.  I’d rather have practical than pretty.

It’s like saying I want orthotics rather than Manolos.  But, there’s this thing that I want.   I want it so badly I almost asked for it for Hanukkah.  It’s not at all romantic and while completely practical, the price is more than we were spending on gifts for each other this year.

The mystery gift?  A Fujitsu ScanSnap S1500M. I know, I know.  My mother did teach me that anything with a cord is not an acceptable gift.  Which in any other given year would be great advice (flawless, 2-carat diamond studs in 4-prong, platinum martini settings have been at the top of the list for many years leading up to this one), but this year for Hanukkah what I really want is to stop drowning in the sea of insurance EOB’s (Explanation of Benefits) and doctors bills and pharmacy receipts.  And, I think that this scanner might just help with that.

I got a bill from the hospital the other day saying I owed almost $900. But, I actually understand insurance stuff, and I know that there was no way that I truly owed that. So, I called the insurance company to see how much they paid, and how much I owed on that particular bill. Turns out I owed $35. So, I called the hospital finance number to be told that their offices were closed for the day, and to call back on their next business day. Which I did, but was told that their computers were currently being updated and I’d have to call back later that day. Which I did. When all was said and done, I didn’t owe them anything because we had overpaid on another bill, so I had a credit at the hospital.

This is why I want a scanner.  I want a scanner to help me save and sort through all this paper. On this particular scanncer, the OCR software is supposed to be fantastic, and I’d be able to scan everything and then sort through it all on the fly.  It’s not that it would have saved me the phone calls and the aggravation, but it would have made the entire process more efficient.  All the information that I needed to provide both the insurance company and hospital would have been in an easy to access format and I wouldn’t have been searching through the endless stacks piled on my desk.

I hate that thoughts of sorting, saving and searching are what make me giddy this year.  I look forward to the day when style trumps substance.

Right now though, I’ll take those Hush Puppies over stilettos.

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Don’t be surprised, don’t be surpriiiiiiiiiised.

December 14, 2009 at 9:33 pm (Life goes on)
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Not much new to report.  Had a mini-breakdown this morning because L had his Hanukkah skit and I had herceptin.  Fortunately, Dr. A’s office was able to get me in and out very quickly (almost 45 minutes earlier than I’ve been averaging on herceptin-only days) and I made it with about 2 minutes to spare.  I loved the look on L’s face when he saw me sitting in the audience.  It is what makes me put one foot in front of the other on the days that I just don’t want to do anything.  Like I said last time, those little everyday miracles are there if you are looking.

C is in India right now on business, and we miss him terribly.  But, it is a feel good week, and I am strong and getting things done.  I got a whole mess of laundry folded and put away, and the boys got their things put up too.  I like when I can get small things scratched off the to-do list.  I also think that I found someone to help me around the house so that things like laundry, vacuuming and clearing out the refrigerator get done regularly.  A big special thank you to JFG for your matchmaking skills there.

OK, that’s the update.  Nothing profound, but just a nice, quiet, good day with a happy surprise thrown in for good measure.

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We will march on, with General Tso’s and egg foo yung…

December 11, 2009 at 10:57 am (Family & Friends)
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Happy Hanukkah to those that celebrate. I finished shopping for the boys last night and we’re gearing up for the first night with the family at my folks. My mom is making it “easy” on herself this year and decided that a brisket and chicken weren’t necessary, so we’re only having chicken (the carnivores anyway). And scratch-made latkes. And scratch-made vegetable matzoh ball soup. And Streitz soup for the boys. And salad. And applesauce…you get the idea.

My sister is bringing the traditional jelly doughnuts.  I am bringing other desserts because my house if overflowing with the generosity of my friends, and the desserts are taking over my counter.  We’ll have cookies, brownies, caramel-apple pie and some rugelach.  I’m pretty sure that the boys will be bouncing all over the house trying to get into those packages, but I’m not above bribery. If the smorgasbord of sugar means that I’ll get some real food into them, I’ll use it.

I’m going to give a quick Wikipedia explanation of Hanukah here for anyone who doesn’t know why Hanukkah is celebrated:

Hanukkah, also known as the Festival of Lights, is an eight-day Jewish holiday commemorating the rededication of the Holy Temple in Jerusalem at the time of the Maccabean Revolt of the 2nd century BCE. Hanukkah is observed for eight nights, and may occur from late November to late December.  According to the Talmud, at the re-dedication following the victory of the Maccabees, there was only enough consecrated olive oil to fuel the eternal flame in the Temple for one day. Miraculously, the oil burned for eight days, which was the length of time it took to press, prepare and consecrate fresh olive oil.

So, on this Hanukkah Eve day, I’d like to wish you a happy, fun celebration if you’re celebrating tonight.  And, regardless of whether you celebrate Hanukkah or not, I wish you all a lifetime filled with miracles, big and small, and the presence of mind to see them each day.

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