Sunday, May 25, 2014

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


Tuesday, May 13, 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.




Thursday, March 20, 2014

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.  

Wednesday, March 12, 2014

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!

Friday, February 21, 2014

All the Lady Bits

an actual variety of apples. this has nothing to do with anything but I had to share it with all of you.

Back from my actual post-op appointment with the surgeon.  Here is the (somewhat) complete report:
1. All cysts, polyps, and endometriosis have been cleared from the reproductive system. "You really needed that." - the doctor
2. All parts removed and sent for testing returned negative for anything harmful.  Benign is the word of the week.
3. The surgeon was so proud of her handiwork, she told me I should wear only bikinis from now on. (I will tuck this into my back pocket and continue to wear the high neck suits that cover my field of radiation as well as those "tiger" stretch marks - thanks, Judah.)
4. She still thinks I am an old lady at age 36. No time to waste!!

Good news, yes. I am mostly feeling groovy about it. Of course being not dead and being told you are not in danger of being dead in the near future are both truly wonderful. Anyone who's had a near death experience appreciates being not dead in a way that perhaps others do not. But it's hard to keep a positive frame of mind about fertility when we've been at this for 5 years. Whatever small shred of optimism left the building months/years ago. You can call what's leftover pessimism if you want, but I choose realism.

I will say, with certainty, that there is one thing that helps keep the grooviness going. Knowing that people are rooting for you - whatever the goal may be - makes it easier to endure the potholes, detours, giant speed bumps, sharp turns, and wrong turns along the way. This is an extended thank you to all in the FB world who chime in and click LIKE for good news. I know some people prefer to handle their private lives, well, privately. I was never a private person, so that was not really an option. But I think it's always helped me to feel like part of a community.

I am a member of a few closed FB support groups, that have been the main reason I stick with it when I'm feeling sorry for myself. A few months ago, I read a little story by Anne Lamott (she posted it as a status update) and the moral of the piece was this:

If you want to have loving feelings, do loving things. 

For some reason, it stuck.  I don't always/often get a chance to practice that, and sometimes/usually the negativity wins out and I recite my s*#t list to my mom a la telephone. But the support groups are a way to send the love out.  And I notice that it often/usually comes back.

With gratitude for being on my groovy team.




Wednesday, February 12, 2014

Post Op

last week's loveliness


Ice Storm? Check.
Power outage? Check.
superstorm superhero ICE CUBE

meet: our makeshift fridge
Power/heat restoration? Check.
Surgery?  Check.
Phone/wifi/cable restoration? Check.
Snow day tomorrow? Check.

Basically the only thing not happening around these parts is work.  But who needs money anyway? We are now in day 2 of recovering from the surgery we had been planning for a few weeks.

one fine hairnet
Though it took an extra hour to complete, the procedure was successful and the surgeon reports that my insides are now squeaky clean. Sore, but clean. And though I do have experience with anesthesia in the past (see surgical biopsy), my reaction has not been too dramatic. This week, however, presented some fresh fun post-op.  I woke quite groggy, nauseous, and dizzy. Typically this starts to subside in an hour or so, but not the case for me.  I was unable to get up for a few hours, and even then it was a bit tricky.  They decided to keep me overnight at the hospital (though it was supposed to be outpatient), and got me a bed - lickety split - by 2 am. Then, my blood pressure dropped, everyone came to my room, they ordered me some extra fluids and labs, yadda yadda. Never a dull moment.

Now, I have come a long way from assuming my death was imminent (see cancer diagnosis 2010) and I am usually not feeling terrified on a regular basis. Anymore. But this was like a throwback to 3 years ago and I was worried. Do you ever find it hard to tell the difference between fear and instinct? I frequently cannot differentiate between the two and they dress up as the same feeling. Luckily, I allowed the doctors and my family members to lead the way and I pushed off the fears I was having about this surgery.  I went through with it, as recommended by all parties, and I am now gratefully on the other side.

What did I learn from this week?
#1. That maybe my fear/instinct isn't always 100% in predicting the future.  I was watching Defending Your Life last night (yes we own it - for emergencies like when the cable is out) and caught this super resonant quote:

"Fear is like a giant fog, it sits on your brain and blocks everything: real feelings, true happiness, real joy.  They can't get through that fog. But you lift it, and buddy, you're in for the ride of your life."



#2. I also learned that my body is not made of the same stuff as it was before treatment.  I am not one of those people who goes on to run marathons and become a champion athlete after surviving cancer.  I am alive and that is the marathon I'm running.  As long as I can stay away from anesthesia and hospitals in general, I think I'll be ok.

#3. Finally, I learned that everything that was removed from my insides is now hanging at some pathology lab in New Jersey, percolating in a petri dish and hopefully turning into absolutely nothing remarkable. More waiting for those answers.

I have 4 new scars to add to my permanent collection, but they are small, I think. Still haven't removed the bandages. Shoulder/back/neck pain is intense, but that's why they made prescription drugs. My guys are now at home for the next 24 hours due to yet another much needed snow day. Can you hear the sarcasm dripping from my voice? No lie, I am glad they're both here to keep me company. Plus the cable's back. So as long as we've got power, we're in business.




Winter is Coming

Sunday, January 19, 2014

What it is.

Losing your fertility to cancer is like a sucker punch.  It's not bad enough your cells went rogue in the first place, you had to lose your hair, change directions in your career, develop post-treatment (potentially lifelong) disorders, and have an increased chance for secondary cancers.  No, the universe says, better make sure your entire life's trajectory is altered and prevent you from bearing anymore of those pesky offspring, even though there is no evidence that your cancer was caused by genetics.

I've not been exactly mum about our struggles to have another child, but I know I haven't been completely forthcoming either.  It bothers me both ways.  If I share all the gory details, which no one truly wants to read about, I've overshared.  If I share nothing, it makes it seem that infertility (especially after cancer) is something shameful.  Or that I have any control over?  Or that I'm failing and can't bear to share my failure with my friends and family.

I am nothing if not a big mouth for a cause.  For this reason, you can consider this post my "coming out" for infertility.  Yes, it's true.  We have struggled for years, with the help of multiple (I've lost count) doctors, acupuncturists, herbalists, massage therapists, healers, meditation and yoga classes, shots, pills, yadda yadda.  Whatever there is to try, we've tried it (stopped short of IVF).  Including traditional Mayan and Korean therapies.  Because, hey, why not?  Maybe they know something I don't.

And I have vowed that we are not going to walk into 2015 doing the same things we were doing going into 2009, 2010 or 2012 or 2013 or 2014 (I skipped over that loathsome cancer year).  So this is it, folks.  It's now or never.
happy 2014
What does this mean?  It means we are on our last doctor.  It means we will make some bold moves this year and possibly try some things that are scary, especially for someone with my history of reactions to medications.  And it means (most likely) that we will be grieving the loss of having a biological sibling for our amazing child.

Judah's family portrait from a few years ago when he pretended to have a sister named Hannah.
But it also means we may be closer to finding our second child, whoever, wherever he or she may be (perhaps not even a twinkle in an eye yet).  Dan, ever the optimist, always feels we are closer to, rather than farther from.  As time continues to pass, I'm not so sure.

Ever the planner, I am trying to prepare myself for what I feel is inevitable.  Of course I am so grateful for Judah, our absolute gem and miracle.  But his existence does not negate my lifelong hopes and dreams of being a mother multiple times over.  I am sad to lose out on being pregnant again, to miss the opportunity to bond with another baby like I did with Judah, to miss nursing (Judah had a bit of an issue..), to have another child with the love of my life made of pieces of each of us.

I know some parents are not as attached to this idea of genetics and pregnancy.  And for them, it may have been a quick move to adopt.  But adoption is no walk in the proverbial park either. There is even more uncertainty than in pregnancy involved.  No control over the pre-natal environment.  High, high cost (for domestic infant adoption - upwards of $30K).  Home studies, wait time, birth families that could change their minds before finalization...  I don't think most of us dream of going down this path.

We will, though, if that is where our road leads.  Before we turn onto Adoption Avenue, I am scheduled to have some good old surgery mid-February!  Back to the OR for me, to investigate (hopefully for the last time) that same stinking cyst (think back to last June), and a few other non-rent payers that have taken up shop.  I had hoped that at least chemo could've killed the endometriosis, too, but it looks like not.  Of course, no one is talking cancer, per se, but I am on guard.  The bits to be removed will all be sent to pathology for further investigation and to confirm that there are no cancerous cells found within.

I hope that one day, perhaps in the not-so-distant future, I will have some profound wisdom to share about the emotional and physical adventures my body has experienced over the past 5 years. So far, the only things I've learned is that life is too short, there's no such thing as a free lunch (though perhaps a free trip to Hawaii), and the internet is a black hole of time suckage.


Thanks to you for keeping up with my never ending dramatics.  Stay tuned for Season 37.