Saturday, January 20, 2018

The big C

The last post and this post were originally one in the same-written with fresh, raw emotions. Those same emotions that probably provoked me to delete. So instead you get the whole story until now, diluted by hindsight. So here goes...

It was a Saturday and we were on our way to Canton to visit friends when I got a call from Mom. Selfishly, I thought she was calling to check in on me per my ‘news’, but once I answered, I heard that tell-tale tone in her voice. You know, the one that raises the hair on your arms and creates a pit in your stomach. She got right to the point, “Your Dad's being admitted to the hospital. It looks like he’s in kidney failure. We don’t know much else right now. I just wanted you to know what is going on.”

That sickening calm came over me and I said ok, probably asked a question or two that I can’t remember now and told her to keep me updated. I hung up the phone and started to cry. I told Jonathan what I knew and we drove on in silence.

I’m not sure I remember much about that weekend, but I do remember doing some frantic googling because of how scary “kidney failure” sounds. I mean, when one of your organs fails, there’s no coming back, right? Well not in this case because he was quickly treated. He went to the ER because with severe back pain and a slew of tests revealed the kidney problem.

A couple of days to confirm, but the doctors suspected cancer. It turns out that the kidney problem is indicative of a specific type of cancer, Multiple Myeloma. He tested positive and they started him on Chemo immediately. 

So what is Multiple Myleoma? Well this is how the Mayo Clinic defines it - Multiple myeloma is a cancer that forms in a type of white blood cell called a plasma cell. Plasma cells help you fight infections by making antibodies that recognize and attack germs. Multiple myeloma causes cancer cells to accumulate in the bone marrow, where they crowd out healthy blood cells.  

That’s all very technical so I just tell people it’s in the same cancer class of leukemia and lymphomas.

Now what do you do, who do you call when you feel lost and you can’t lean on your mom and dad? Well, it helps when your best friend, the one that just beat the shit out of breast cancer, also works as a Nurse at Children’s Hospital specializing in leukemia and lymphoma bone marrow transplants. 

Kelli will probably have a better recollection than I, but I remember it all came pouring out--- Jonathan currently not working, me starting a new job (possibly), pregnant and now Cancer! While she claimed to not know much about this type of cancer (because it very rarely presents in Pediatrics), she knew more than most people, both from a first-hand experience of getting a Cancer diagnosis to also caring for patients that have treatment courses similar to what Dad would ultimately go through. She told me what she knew in that calming nurse way that didn’t over promise success, but also didn’t scare me to tears. OH I Love you Kel.

As the never ending appointments started for Dad, I would ask for as much detail as I could remember and then quickly dial my inside source. She would help translate what I heard third hand. What did she know about this drug and that drug, what does this diagnosis mean, should he be going to a different hospital???

The plan was for Dad to be on Chemo for three months (not the most aggressive Chemo, but not exactly anything anyone volunteers for). After the first three months they would check his numbers (what numbers, I don’t know, but they’d check them) and if the numbers were good (low?) They’d probably recommend an autologous bone marrow transplant.

What the what??

Essentially it’s a transplant of your own bone marrow back to you. They take the bone marrow – dose you with Chemo (like a shit ton of strong chemo) I think they call it ablative, and then give you your own bone marrow back. This is safer than getting a bone marrow transplant from someone else. But either way he has to be in the hospital for three weeks because he will have NO immune system to protect him.

After the transplant, they'd give him three months to rebound, you know, from almost killing him with Chemo. Then they check his numbers again and he’ll start back on the same lower dose chemo he started with.

Can you imagine all the questions I had for Kelli?

The most frustrating part is that all of the above information was not for sure. I think they were trying to tell us that it is a very fluid process and there are so many factors to take into consideration. There was no way to tell what the treatment plan would be in 6 months. We wanted to hear the plan, the checkpoints and the assurances that this would work. We were digging for hope and optimism. Yeah, the Oncologists don’t work that way…

How do I distill a whole year of my experience with this into one post? I don’t know. 

One day, I’d like to ask my mom to describe her feelings over the past year. I know my parents were in a precarious spot of being scared, but also driven to protect us and not worry us. I can’t imagine the fear, anxiety and suffocating worry.

All I can do is talk about the experience from my perspective. Deep down I was (and continue to be) more optimistic than my sisters. Maybe it was all the talking to Kelli, or just my denial that this would get really bad, but I didn’t think that this would be the end for Dad, just a really painful battle. I remember expressing my optimism once to my sisters. I immediately felt embarrassed and naive when these highly educated medical professionals didn’t have the same positive expectations. I also was worried that my optimism would be mistaken for under-appreciation of the pain, exhaustion and sickness dad would experience.

There were times when I was selfishly grateful that the worst of the experience would take place close to my home so I could be there for support. But to be honest, this stage in my life made it difficult for me to be the support I wanted to be for my parents. I want to be there for my young kids, but also pulled to be near my parents. Couple all of that with a new job in which I had to save all of my PTO for an upcoming maternity leave so we could still pay the bills. It was often a gut-wrenching feeling, dissecting the 24 hours in the day wanting to be in all places, knowing each day I took off work was stealing time from my unborn baby, but each day I worked, stole time away from my parents, all the while deferring my own feelings. There were days I cried at my desk, days I cried in the bathroom at home and days that I screamed at Jonathan for things that had nothing to do with him. Saying it was a hard year doesn’t really do it justice. And that’s just my perspective, I wasn’t even the one going through Chemo or caring and worrying for my partner who was trying to fight cancer.

It’s a lot to distill into one post, which is why this one is so long. I will end it with this text that Dad just sent this week – almost one year after his initial diagnosis.

"Good news today from the James. The latest bone marrow biopsy revealed Minimal Residual Disease MRD! The test is now refined to even reveal very low levels. In my case as Melissa told me they reported a big fat zero! This is the best possile outcome at this point...But in any event wanted to share this good news with all of you who have cared for me and worried for too long. Love you all."

It's never really over, but we are so lucky! Here's to a Healthy 2018!

Tuesday, January 9, 2018

January 2017



So I had a very long blog post somewhere that I must have deleted. It documented the craziness of January last year. My guess is that I deleted it because I didn’t want all of my negative feelings posted without time to resolve and come to terms with all of it. So now what I write will be through the lens of hindsight, and not as raw as what I probably deleted.

Close your eyes and pretend its January 2017, a year ago….
I’m still working at the big blue bank, but I am actively interviewing at a regional green bank at the same time Jonathan is actively looking for his next employer. It was during the month of January that the green bank informed me of their job offer. I’m a ball of nerves as I begin the negotiation process that determines the livelihood of my family. I am all for negotiating strongly and knowing that I’m the only one that will fight for me, but I’m also a chicken. Jonathan pushes me to ask for an obscene salary. I’m glad he does because it pushes me to ask for more than my modesty would normally allow. After many stressful weeks of negotiations we settle on a number. I unofficially accept and begin to plan my resignation from the blue bank.

It was around this time that I mentioned to Jonathan, half joking that “I don’t remember the last time I had my period, what if I’m pregnant?” Knowing how difficult it was for us to get pregnant previously, we both shrug it off with a laugh as a sign of our stressful lives. As I get closer to leaving one job for another, the thought again crosses my mind. I should just confirm that I’m not pregnant.

Here is the text exchange

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He did not get that last message to not waste the money...

So for about a week, a pregnancy test sat in our bathroom taunting me. I finally decide to take it so I could throw it away. After the obligatory three minutes, I look down and faintly see that second line creating a plus sign. WTF? Are my eyes playing tricks on me? So many times I’ve looked at these tests and willed that line to be there, maybe that’s what’s happening. I’m seeing pink lines where there are none to be seen. But I know! I know that false positives don’t happen. Even the faintest of lines indicates something.

NOW WHAT? WE don’t have the money for another child, we don’t have the room, I don’t have the energy. I just accepted a new job. What will they do? How will they respond? I won’t get a maternity benefit. I am leaving a company that has one of the best Maternity benefits in the US. WHAT AM I GOING TO DO?? I was finally getting some independence back with the girls out of diapers, pull ups. Bottles, baby food, teething and Breastfeeding were almost distant memories. Yes, babies are awesome, but it’s not like I get the luxury of focusing my energy on the baby, I have to work, pay the mortgage and put food in the fridge.

I made it all the way to work before I sat in a room and cried. Oh the irony. The years of willing it to happen and then it did, just not in my twenties or early thirties!

So I did what any girl would do, I called my mom.

 She could tell I was crying so I had to quickly reassure her that it wasn’t anything bad (no one was hurt or dying). As my fears and poured out over the phone faster than my tears dropped I realized I was saying all of this to a woman who had raised three awesome children and was pretty successful herself, putting herself through school with those three kids and a full time job. I sounded foolish because all of the things I was scared of, she did and more. 

My biggest concern at the moment was what to do about this job opportunity…Do I pass on it because I ‘might’ need maternity leave benefits. I mean all I had done at this point was pee on a stick. What if I miscarried, what if it was false, what if, what if?? Well my wise mother gave me some great advice – “Marci, you pick the job that is best for your career and your family. Maternity leave is a one-time benefit and shouldn’t be the determining factor.” 

Boy I’m glad we had that conversation on the Friday we did, because the next day things changed. Her attention and focus rightfully shifted as Dad was admitted to the hospital....

Thursday, December 28, 2017

2017 - in Retrospect

Hey, guess what? I'm still here.


Almost a year to the day of my last blog post I've decided (been bullied by Anna) to return to posting. 2017 was a very big year and I did not stop writing, I just couldn't find the time to edit it all and post. From career changes, to family changes, the big C and a little J only to wrap up the year with the loss of our dear Sammy. It was a lot to sort through and as always writing helps me with that.


So, for the next month or so - depending on how diligent I can be, I'll be posting 2017 in retrospect. I'll try and keep it chronological so they still make sense, but we'll see how this goes.

Saturday, January 14, 2017

Wedding Anniversary - 8 years married, 15 together.

Not that kind of "Dear John" letter...

This week marks our 8th wedding anniversary, almost 15 years together. When I think back, we seem so young and naive. We really have grown up together. When we decided to get married, I felt we were crossing an invisible threshold into adulthood. How many thresholds have we now crossed? Each time making us more 'adult'. Luckily you (and hopefully I) haven't lost your juvenile sense of mischief. Although it does get harder to be ridiculous when you're trying to teach the kids to be responsible and smart.

I'll tell you what, I'm tired of being an adult sometimes. Can we go back to the irresponsible kids at OU. Do you remember when we had fans? When the biggest problem was paying for beer and what to do on a rainy afternoon?

Life is so complicated as an adult, always throwing tough shit our way. Even when it gets REALLY, REALLY BAD, I'm still proud of my younger self for picking so wisely. And proud of the foresight in the stubborn, younger you for not letting me go, even though I tried halfheartedly.

What I'm slowly learning is that the tough times don't preclude the beauty, especially that of our growing family. I understand better each day the analogy of a life being a tapestry woven together-without the threads of struggle, doubt, fear, anxiety and vulnerability so intertwined with joy, laughter, excitement and love we wouldn't have created this life, this deep, beautiful and sometimes painful life. 

The balance is hard. Prioritizing each other is something we are refocused on. Thank you for that. You bring so much laughter, levity, sensitivity and strength to me. Your spirit is the strongest thread of this family. When it weakens, we all do. I took that for granted. It really is what keeps us all burning bright and focused on the joyful moments in life.

Thank you for being patient with me (most of the time). I know I'm a very sensitive, passionate and emotional person trying to excel in a very logical, pragmatic world. It is big role to be the protector of a heart this big, and easily bruised.

I love you!
MP8R7887

Saturday, January 7, 2017

Caroline is 5!

Dear Caroline
Happy 5th Birthday my Sweet. You are so sensitive and so smart. The combination makes you seem so much older and grown up. I forget that sometimes, until you fall apart from all the grown up things you are carrying. And I admonish myself for not only letting you carry it, but also for not teaching the tools of how to put it all down. You're always teaching me how to be a better Mom.

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It’s funny to me that five is such an important age for you. Leading up to your birthday you talked about how you think you’ll feel different when you wake up and are five, or how you’ll get to wear the big girl seat belt when you are five (not so much my petite girl). On your birthday, you kept asking “is it really real? Am I really five now?” And when everyone came over for our Christmas on New Years Day, you told each and every person that you are five now, for real.

You are so dramatic that Aunt Biscuit is insisting that I enroll you in dance or theater or something. You love to show off your moves. It seems that music speaks to your soul. This summer while playing in the sprinkler outside, you stopped in your tracks to focus on the small bluetooth speaker that played a pop ballad (probably Taylor Swift). You were having such a moment that I couldn’t break your attention to even get you to look at me. There was an invisible bubble that no one could burst, just you and the music as the world faded away. There is a deep well of passion in you that once focused will take you great places.

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 Oh you are so sensitive, and full of empathy. You are often the first to give me a hug before I’ve even realized I needed one. When your sister gets hurt, I know it first by your scream, "Oh no Maggie!". But be careful little one, that empathy is a gift that you are generous with. Make sure to save some for yourself.


SSJ_8629
Another big milestone this year was when we confirmed our suspicion that you couldn’t see very well. With two parents that have never know the inside of an optometrist, it was eye-opening (pun intended). When I received your prescriptions, I immediately went to google to gauge the severity. Nearsighted, farsighted and astigmatisms were all concepts I never needed to comprehend until now. It turns out that those beautiful eyes of yours need some major lenses to even get you close to 20/30 vision. But on the bright side – a whole new world of fashion accessories has now be opened up for you (and consequently your sister too, as she demanded sunglasses to match).

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Speaking of fashion, I love watching you pick out what you are going to wear every day. I stopped weighing in years ago, unless it was to keep you clothed and warm. At first it was all about the characters, Hello Kitty, Minnie Mouse, Elsa... But now it's about patterns, colors and combinations. Its all very bold and sometimes an overindulgence in patterns, but I love it. Its another outlet of your creativity.

Caroline, I love watching the blossom of new interests and the colors of your personality deepening and changing. I can't wait for more as we grow together.

I love you so much!

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Tuesday, November 1, 2016

The Moo turns 3

                Happy Birthday my Maggie Moo…

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I can’t believe you are turning three. You are so tall that sometimes it’s hard to think of you as only being three. Often thought to be Caroline’s twin, it won’t be long before you are taller than here and wearing the same size clothing.

Right now you are at an AWESOME age. You are talking a ton, but it is still with the newly formed words that haven’t been refined into discernible sentences. I often have to ask you to repeat yourself, only to throw my hands up and admit I have no idea what you are so adamant about. You have the tone right, but the pronunciation stumps even your sister.

You love to play pretend. Almost daily you look at me and say “I be princess and you be knight. Ok?”
 Or, if I have my phone in my hand and you want to play with it, I’ll hear you say, “I be momma and you be Margaret Jane.” Then, without any pause you follow with, “Margaret Jane that is momma’s phone. Give it to me.”

The other night we had a thunderstorm. The thunder was almost as loud as your screams. When I went to console you, you were visibly shaking and your eyes were as big as saucers. It was so adorable I almost laughed. I lay down with you and you clung to my arm with desperation pleading for me to stay. It was as if you were listening with your eyes. They darted back and forth with each increasingly distant roll of thunder. You informed me, between vigorous pacifier sucks, that the storm did not go away yet. 

Every day you shed another layer of baby from your face. You are changing so fast. It makes me sad and surprised and excited for your future all at the same time. I notice it most in your eyes, wide and innocent (unless angry at me, you have mastered the scowl). 

You are almost potty trained. But you will remind me regularly that this too is a skill not yet mastered.  Believe me, I’m ready to check that box on the development milestone chart.

My happy girl, you are pure sunshine. I'm so lucky to have your golden smile in my life. I love you.




Saturday, May 28, 2016

SUMMER!

So it has been a VERY busy spring for us and a not very warm one to boot. I mean it's memorial day weekend, hot and humid and we had the furnace running just two weeks ago. Now I"m listening to the downpour of summer rain. That late afternoon shower that you can feel coming on. The humidity keeps climbing until the air can't contain one more drop and just bursts into buckets that create joyful puddles.

Right now Caroline is getting her shoes on so she can go play in it while Maggie snoozes.

We still have two houses that we are maintaining, but luckily the end is in sight. Ironically enough it was 11 years ago this weekend that we closed on that first house. Hard to believe how much has changed since then.

I had a whole blog post somewhere already written about a bad bout of stomach flu that took us all out. You know, a post that documents how awful it is to have two young kids vomiting especially when you are hugging the porcelain bowl yourself. In the madness of our busy lives I probably deleted it.

Life seems really good right now (or I'm just feeling especially optimistic). The challenges we face are really minor when you think about how hard others have it or how hard it could be. But of course the feeling of gratitude often leads to anxiety, the stress of wanting to fiercely protecting our fragile balance.That balance that is really beyond control.

Enough with that train of thought...I wanted to check in, continue to post and document our daily lives.

I'll close with some pictures that we had taken for Bubby and Grandpa's 40th wedding anniversary.

Happy Summer!

I call this one, EMO teenager in training



This is my southern belle - I imagine her saying, "Oh goodness me"


Sisters




The whole crazy clan