Home » AL Amyloidosis » My Husband is Two Months Old

My Husband is Two Months Old

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Our days are busy. There is no spa like serenity in the Solot household. School, first days, back to school nights, the tooth fairy, potty training, a visit from the poopy fairy who leaves a matchbox car if the poop actually goes into the potty, a 13-year-old incontinent Basset Hound, big boy bed, bee fears, school fears, nightmares, toddler temper tantrums, five-year-old temper tantrums, punches, kicks, pinching, and screaming, we are one loud and frenetic family. With all the attention seeking shenanigans, it is hard to remember that I’m married to the most vulnerable person in the household.

On Sunday, October 2nd, Josh will be two months old. Today he went back to work. He often cooks dinner, cleans, and helps with pick-ups. With three little kids, all adult hands on deck are often needed. It is easy to forget that Josh is still healing. He has rebounded quicker than expected. His white blood cells and red cells have jumped up, his nausea waves are less frequent, but we still need the evil amyloid producing light chains to return to normal levels. We need to patiently wait to see if his stem cell transplant worked. I’m not very good at the patiently waiting part. I want to know that he is all better.

With normal schedules emerging, my brain likes to trick me into thinking the amyloidosis is gone and we can close the chapter on last summer’s nightmare. Unfortunately, that is not how amyloid works. I like guarantees, probabilities, control, and explanations. This disease lacks most of those things. Life lacks those things too, this is hard for my type-A, rule following, control freak brain to grasp.  We must patiently wait and see while Josh heals further. He appears strong and healthy, but he is only two-months-old and we need the pesky light chains to decrease in his blood.

Tonight, September 30th, there is a new moon. The second new moon of the month, which makes it a black moon. I am not an astrologer, but right now, I am grappling for some magic. Google says this new moom presents the chance to begin anew and move forward into the next phase. In fact, “Bustle” says this new moon is “jam packed with positive vibes, particularly for Libras.” Coincidentally, I am a Libra, so is my twin sister, and Josh’s mother. WE ALL LOVE JOSH, so I’m sure they will join me in sending any new moon magic towards healing him.

Friends reading this, those who I know and those who I don’t. I know Josh is walking around town handsome, hairless, and strong, but he still needs all the magic juju you can muster sent his way. Please pray/vibe/send energy with me and our family for a complete hematological response. I know we have no control over whether this stem cell transplant worked, but I would love to use the power of magical thinking to encourage Josh’s light chains to plummet.

I don’t want to jinx myself by writing, hoping, or even thinking of what could be or the  possibility of  being devastated by more treatment, because we will fight what we have to and I know many people have to. But friends, I’m wishing for a full recovery, we would love a respite from chemo, hospitals, and infusion centers. Fresh mountain air, ski trips, hikes, movies, chili, soups, take-out, hot chocolate, work, routine, and love sound fantastic.

On November 2nd, Josh has his second bone marrow biopsy. On November 22nd, we get the results of all this craziness. PLEASE KEEP US IN YOUR THOUGHTS!!!! Hopefully soon, I can tell you to pass your positive thoughts elsewhere. I feel slightly greedy and selfish asking for prayers, because so many people need them and I know my family is extremely lucky in the grand scheme of things and I’m reminded of our fortune daily. But I know Josh isn’t asking for any, so I am seeking magic on his behalf. As my friend Laurel says, “prayers aren’t finite, keep asking for them.” (She may have been talking about friends bringing meals, but same principle).

Thanks for the love everyone. Josh is truly an amazing human being and I am so lucky to have his hand to hold onto in this crazy world.

XO

Justine

(Thank you Julie Harris for all the beautiful photos you took of our crazy family).

 

 

 

 

 

 

 

 

8 thoughts on “My Husband is Two Months Old

  1. You are an amazing woman and are doing such a fantastic job of keeping it together. Good Thoughts, healing vibes, juju and prayers are constantly being sent your way by me! Love to all and make sure you know I mean it., Aunt Steph

  2. Happy for your 2 good months! That is the cutest picture of you guys on the bed😍 Positive energy from this house on your upcoming testing. Baby steps…….keep em coming……love from maggie Brinkman , Norfolk , VA

  3. I’m sending all my love, positivity, and healing thoughts your way! I think you are simply amazing and so strong. Raising little kids is hard on its own, not to mention the stress of what you’re going through. Xoxo much love from my family

  4. Dear Justine
    As I sit here reading your thoughts quietly sitting on my bed it gave me a chance to remember that we have to put “things” in the right order. About 10 minutes ago I was panicking thinking would I have enough brisket for 30 people coming to our home to bring in the New Year! What I need to remember is that being together to celebrate the beautiful holiday of Rosh Hashanah is more important! How easy it is for us to forget!
    Tonight as we light the candles and bless the wine and the challah we will also be taking a minute to say a prayer for Josh!
    We send a L’Shana Tovah from your Philly family and know that you all are in my prayers every day!
    Love you guys
    Gail

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