4 Years Later

On this date in 2010, I honestly don't remember how I was feeling upon waking up in the morning. I had my final radiation treatment planned for that afternoon at 4, and I'm sure on one hand, I was ready to be done. On the other hand, once you get to the end of a treatment plan, a terrifying wait lies ahead. You must wait to find out if the treatment worked.

don't move. this invisible burning beam won't hurt a bit.

hair is growing back. candles are lighting the darkness.

we made it.

When I first started out in chemo, I recall wanting to throw a huge End of Cancer dance party and invite the whole team to join me. But as I moved closer to the end of treatment, I realized that you cannot predict the end of cancer. And that is terrifying. We never went through with that dance party, instead settling for impromptu kitchen dance parties, and trips we won to Disney and Hawaii.

this just might be the happiest place on earth

no, wait. I spoke too soon.

As much as things changed after that, life went on, thank goodness. I changed my job (a few times) and Judah started school. Dan and I continued to work on growing our family, very uncertain as to how it might/if it might ever happen.

It feels as though every month of the year there is another cancerversary - diagnosis day, first day of chemo, last day of chemo, end of radiation, scan results, and on and on. You cannot know what seeing those dates on the calendar will feel like until you get there. And they seem to change meaning with each blessed passing year.

This year, December 27th brings exhaustion (and disbelief) of being 31 weeks pregnant. I'm not sure I've really accepted what is on the horizon as I was way more prepared for a different path. That being said, the whole "dark cloud" feeling hasn't fully passed either. Once scary things have happened, it's hard to believe they won't happen again. The scariest thing staring me in the face on today's cancerversary is, of course, labor. I've got 8 more weeks to go and the promise that delivery #2 won't be as traumatizing as #1 (a whole other can of worms). Note: no horror stories please. Not helpful.

In the meantime, tonight we are enjoying 4 years cancer free, looking ahead to 2015 and the many new adventures about to begin. Thanks again to all of you on Team Mama Mia - without a doubt the best cheerleaders there are.

Sending wishes to all of you for a very happy and healthy new year.

The Latest

I've been kind of quiet on the blog the past few months. Actually, that's not entirely accurate. I have written posts, but not published them. Didn't feel right.

But I guess it's time I did publish one. So here goes. What is happening in the life of this cancer survivor?

It's October and it just dawned on me that a few weeks ago, we passed the 4th anniversary of finishing up chemo. Sometimes it feels like every month holds a different kind of cancerversary. Fortunately, they are going more and more unnoticed.

School is in full swing, I am working in 3 different schools, and trying to keep up. We are on our last day of no screens and no sports for Judah after his scary concussion last week. It was up there in my top 3 most panic-inducing experiences since my journey with parenthood began. I don't even want to go into detail reliving it, I'll just say he is back to himself in all aspects. I'm not sure I'm ready to send him out into the world of recess and gym and soccer and outdoor play without a helmet, but I'll do my best.

Which brings me to The News in our house at the moment: if all goes as we are hoping and planning for, we are quite thrilled (as well as shocked and slightly terrified) to be expecting a baby brother for Judah to join the family in February. It still doesn't feel possible, and there are still some moments when the excitement turns to fear. After working on this for the past 5 years - through cancer and surgeries and procedures and medications, more blood tests than I could ever count - I was much more emotionally prepared for this to NOT happen. So I'm still getting used to the idea that it IS happening.

I finally feel movement each day (this baby already moves more than Judah did...) and that is reassuring. But I haven't lost the nagging suspicion that something bad is lurking around the bend.

While I am very, very glad that things are progressing well and the baby is growing right on target, I do not, by any means, feel safe or certain that everything will continue in that direction. The cancer ptsd definitely rears its head at times like this. Not even that I'm focused on the cancer returning (or a new cancer sprouting), but more that life is so unpredictable. There always seems to be a new danger to fear, waiting for the moment my guard is down.

I've been fairly protective of this information for the past few months, mainly sharing with people upon seeing them. Dan would describe me as pessimistic, anxious, and irrationally superstitious. But I have made some progress in the spirit of being optimistic. I knitted a blanket (Judah's idea). And I have even written a few times in a journal. Ha!

I can recognize that no matter what happens, I would regret not enjoying this time.

Choosing hope.

A New Year

Happy Fall, my bloggy friends. A friend wrote me an email the other day, saying that she was catching up on my blog, which alerted me to the fact that I haven't written on here since May. Yikes! Though I'm not sure I have anything truly profound to share, an update seems in order.

Today is the first day of Autumn. Later this week Dan and I will celebrate our 9th anniversary alongside Rosh Hashanah, the Jewish New Year. School began a few weeks ago and I have been a bit overwhelmed trying to get my schedule together, as I have been assigned to work with teachers in 3 different schools, on 3 different projects, with 3 different schedules and 12 teachers in total. Add that to no parking available in Center City (Philadelphia) and you have a bit of a puzzle for me to solve.

I have good feelings about the upcoming year. My friend Patti and I are working on sending out messages of positivity into the universe, willing things to come into our lives. I mean, we are seeking new houses, feelings of peace, less financial worries, you know, that whole everything-will-be-okay sensation.

Last week, I saw my oncologist last week at my 6 month check up. We waited for more than 40 minutes in the exam room to see him and I was getting a little annoyed at what felt like wasted time, until I realized that someone else was having a problem. It's not like the doctor was out having coffee. Someone else was in need and my only issue was having to wait too long to see him. As Glennon Doyle Melton likes to say: perspectacles.

We are now coming up on 4 years since treatment. September 30 will be exactly 4 years since the final round of chemo, and this December will make 4 years since radiation. 4 YEARS. Judah is in 2nd Grade, a big and real person. We traveled to Toronto and Niagara Falls this summer, and will hopefully have a few more adventures in 5775 (2014-2015). It's all a work in progress, the parenting, the job, the relationships. And though overwhelming at times, I am lucky to be here in the muck of it all.

This year's mantra is: I am doing my best, I am doing my best.

Sending out love and apples and sweet thoughts to you and your family. L'shana tova!

source

Memorial Day

Because we have nothing better to spend our money on, the house decided to spring a leak. Thinking the boys were getting ready to wash the car (for the first time since 2013), I was surprised to hear Dan stomping down the basement stairs. Upon further investigation, Judah informed me that when they went to go use the hose, water began to spray out into the garage, like a sprinkler from the ceiling. Hmm. Thanks a lot, Ice Storm 2014. The gift that keeps on giving.

not our frozen porsche

Me, I'm just getting ready for another May 26th. Tomorrow marks 4 years since I heard my doctor say, "Your bloodwork looks normal, but you have a mass in your chest." Hard to believe it's been 4 eventful, roller coaster, bald-n-hairy years. It simultaneously feels like a lifetime and like no time has passed. There's even a moment here and there where I can't believe it happened at all, almost like I'm still in shock.

In many ways, so much has changed since May 26, 2010. I work at a different job, Dan and I parent a 1st grader (instead of a pre-schooler), I blog, have 6 new scars + an autonomic nervous system disorder, we got to bring Judah to Hawaii, Israel, California, Florida, we finally got rid of the white car... I'm sure there's more, but it might require hypnosis to retrieve from the depths of my mind.

little monkey at age 3

All that being said, my life looks a lot like it did in early 2010. We are still trying to have another kid. Same house, healthy food, and thank goodness (tfoo, tfoo) the 3 of us are still truckin'. I lost my hair, but it grew back (I finally don't have bangs anymore).

waiting for gelati - May 2010

This time of year, I can't help but think back to 4 years ago, and the memories I have of small moments just before the mayhem ensued. A trip to Rita's after dinner when Judah was small enough to carry while we stood in line. My hacking cough. A night at the Phillies game - it hurt to swallow the cheesesteak my brother walked to the other side of the stadium to find. Laying on my left side so I could breathe. Using a hairbrush on my back/stomach/legs/arms/feet to try and quiet the unscratchable itch. The bright sunshine as I waited on the curb for Dan and my dad to come and pick me up after getting some shocking news at the doctor's office.

our view from the hall of fame club

Those are all memories. Today is 2014 and I do not have cancer. In fact, I'm told there is a higher chance of me being struck by lightning than to have a recurrence of Primary Mediastinal Large B Cell Non-Hodgkins Lymphoma.

The crisis at hand is no longer cancer, which turned out to be less a bump in the road, more a traumatizing detour. As time passed, there has been less and less panic about what a recurrence would mean and more fear about other uncertainties (racing heart, finding a job, growing our family).

Here we stand, 4 years later, dealing again/still with the frustration of secondary infertility: wanting to rewind, fast forward, and pause all at the same time. Despite the scars, the tears, and the fears, I am quite grateful to be here to tell the tale.

May 2014

Time for a New Career Path?

The end of the school year is creeping closer. This afternoon, I am writing a lesson which includes reading aloud the book The Duchess of Whimsy to a 1st grade class. In order to demonstrate the meaning of "whimsy", I have designed and created this amazing masterpiece (using only a fire fighter hat, 2 fake flower leis and strategically placed scotch tape).

What kind of degree does one need to become a Hat Designer? 

I actually quite like wearing it on the front part of my head, like a fascinator. I have been wearing it for the past 15 minutes and don't plan on taking it off anytime soon. Duchess of Cambridge, you best put your order in quickly, this hat is a limited edition.

Liz

Today I got a piece of terrible news about a dear virtual friend. She was a real friend to me, a fellow Lymphoma survivor, but I never did meet her in person. Liz seemed to know everything about everything important. Blood cancers, treatment, recovery, parenting, ethics, taking care of strangers. No situation was too big for her to offer her support and encouragement.

When I first came in contact with her, she was posting lots of information on behalf of a group called Patients Against Lymphoma. That group dissolved and she went on her own, advocating for and educating Lymphoma patients and their families through a new name: Hope For Lymphoma. 

She moderated a number of support groups and was active in her local government. Every once in a while she'd disappear from FB due to real life circumstances (Hurricane Sandy, the death of a friend's 14 year old daughter, illness in her family), but she'd always come back with some timely posts - occasionally snarky, always smart.  She offered me lots of advice and was a blog reader. We shared private messages and she always wrote with pride of her 3 children (youngest is finishing his senior year in high school), while she appreciated the anecdotes and photos I posted of my own Mr. J. 

Absent from the online scene for the past few weeks, I did not think anything major was going on. The last time I'd checked in with her (last August), she explained that she'd taken a break from facebook to spend time with her family and friends following the accidental death of her friend's teenager).  Totally understandable. 

But then today, her mother let her friends know that Liz died on Monday, following a few weeks with flu-like symptoms and then a massive heart attack.

I am totally in shock about it, but it's all I've been thinking about since I read the news. I can't help thinking this should be national news. The world should know that someone so warm and caring, smart and generous, was here. She was a helper to others, because she knew that's the only way to get through this short and unpredictable time we have here together. I don't know if I can get a blurb into the New York Times, so for now, this will have to do.

I am grateful that I had the opportunity to connect with someone who brought so much to the table. She devoted so much of her time and energy to other people - usually other people who were experiencing the toughest challenges of their lives - and she made those lives better. I hope her children know how proud they made her and how highly she thought of them. The lesson she left with me is that one person can have a huge impact. Not money, nor fame, but talking to others and sharing knowledge. The world is certainly a better place because she has been here.

Thank you, Liz.  

Hard Choices

anyone else nauseated by this sign?

In the spirit of both openness (my aunt pronounced me Master of Communication yesterday) and honesty about life after cancer, I am taking a cue from Gina Shaw, author of Having Children After Cancer.

Last week, I had my 6 month check up with Dr. Henry, my main oncologist. After updating him on my health ups and downs (see E. Coli 0157 and Surgery on my Reproductive Parts 2.0), he took a gander at my bloodwork results (they work fast over there, not just same day results, but same HOUR results) and declared them "pristine".

While clearly the news was all good coming from my onc, it was super depressing to even sit in the waiting room. I didn't realize how anxious I was until the little vitals cart showed my heart rate was up around 100. Keep in mind I take a pill for that. Hmm.

I did mention to the doc that we are still trying for another kid, though no luck yet. And Dan and I have set a deadline for changing course. That detail, however, I will keep between us. The deadline is there, though. And if you know me, you know I like to have a plan. A plan I have checked and double checked for all possible snafus. A plan that is a stage for success.

That kind of plan is virtually impossible to create when dealing with infertility. No one, even the best planners, can predict outcomes or prepare for all of the unexpected twists and turns along the way. Of course there are statistics, but I'm not a number, I am a person. We can use those stats to help make our decisions, but not to predict the future.

Hey, I fully recognize we are lucky to live in a day and age when we have options before us.  The scary part is choosing the right one. Yes, I know, we will only know in hindsight which was right, what was meant to be, blah blah blah. But there certainly is a great deal of unknown with all of the options of assisted reproductive technology.

Donor egg or own egg IVF? Donor embryo? Adoption? Bali or Fiji? (I wish - that's the kind of decision I'm game to make.)

Clearly, if these are our choices, the biggest challenge in the near future is making a big and bold decision. We have to take into consideration everyone's health. The risks vs. possible benefits. COST (Jeez, domestic adoption is expensive). We know what the end goal is: a happy and healthy (larger) family. It's how to get there that is leaving question clouds in the air over our heads.

***
I leave you with one request. If you know someone struggling to grow their family, take a few minutes and read THIS, as she says it all so I don't have to. I would just add one thing to the bottom of her post (filed under: DOs). In place of advice, I will never turn down a foot rub. Thanks!