Tuesday, March 1, 2016

... and Many Happy Returns

We all have little traditions for special events.

In my family, you always got to pick dinner on your birthday, and if it was feasible, you got your favorite flavor of birthday cake. Or, icingless cupcakes... or whatever weird thing creeps into your brain, like a bowl of spinach instead of ice cream (yes, I preferred spinach as a late night snack as a kid).

March 2nd is my Mom's birthday. She would have been 72.

It's been difficult for me without my Mom. Lynn was a force of nature, fiercely loving and loyal. She filled the room with her laughter, or biting sarcasm. She raised so many people - foster children, friends of her own children, grandchildren... My Mom loved so many people who loved her without reservation or restraint - I wish I could tell every one of them how much she loved them, because she talked about them all with love, and hope. I am so proud of that; she loved with such energy.

And yes, she sucked sometimes. We butted heads more than once, and had to have a 'Come to Jesus' discussion more than once about what our relationship was, and how it was going to work. We hurt each other, without ever meaning to hurt each other. My Mom wasn't big on saying "I'm sorry," but she would go out of her way to make sure you knew she still loved you.

My Mom was my template for strength, and grace, and love. Sometimes she took my breath away with how absolutely perfect her comfort fell like a blanket over my heart. She was a Best Friend, and my biggest fan.

I celebrate my Mom every day. I talk to her every day. Sometimes, I have the best dreams - simple ones, where I'm sitting in the kitchen with her and we're talking about nothing special. Those are the times it takes me a moment to gather myself when I wake up - but I know I smile a little more those days, and feel comforted.

So, March 2nd, I remember the piece of my heart that was so full for 33 years. I was so very lucky to have Lynn as a mom, a friend, a confidant.

"It has been said, 'Time heals all wounds.' I do not agree. The wounds remain. In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens. But it is never gone."
~Rosemary Kennedy

Friday, January 29, 2016

New Scars

Wednesday, at approximately 9:00 eastern standard time, I had surgery to remove a tumor.

You have a thyroid gland in your neck. It wraps around your trachea/esophagus (air and food pipes) like a butterfly. There are four smaller glands, about the size of the end of a writing pen, that are called your parathyroid glands.

The parathyroid closest to my jaw (rather than my collarbone) developed a tumor. Normally, when this happens, doctors go in on the side of the neck and remove the gland so the other three can work normally.

My thyroid has been severely damaged by all the attacks from my immune system. This made the anatomy in my neck differ from normal necks.

My tumor had been growing for so long, it drooped down. My low-hanging tumor pushed itself around my throat, trying to determine where it wanted to keep growing.

My surgeon is the head of surgery at the hospital where my surgery took place. I'm grateful that I had such a seasoned crew.

The following are exact quotes from my surgeon, post procedure. "That was a huge tumor. We almost didn't find it. I was about to give up and take the inferior (lower) gland, but I saw something way in the back. It was lodged between your esophagus and your spine. Most people would have given up a while ago. But we got everything - when we started, your parathyroid hormone levels were over 400 - after we got the huge tumor out, you immediately dropped to 80. That tumor was HUGE!" Typical parathyroid tumors are about the size of an almond. "Yours was gigantic. We started just below your right ear, and hunted until we found it - it was bigger than a giant olive!"

I have a four (or so) inch surgical incision at the base of my throat. I've already noticed differences in drinking, eating, swallowing and my voice even sounds a tiny bit different!

I wish I could say this has been an easy recovery - the pain has been some of the worst I've ever had. Including the colon removal. Turning my head is not allowed, leaning my head back is peril-filled. Bending over threatens all kinds of danger.

Jon has been helping me so much. I hate being a burden to anyone, but when talking on the phone for 15 minutes exhausts me (it was worth to talk to you, Melissa), I don't trust myself to be alone for long periods of time. My balance is not solid - I would flinch if I fell and you'd be amazed how many neck muscles running directly under my surgical scar are required for catching yourself when you slip.

I'm not sleeping well, and I'm hopeful that as I continue to heal, more rest will come. Having a raw throat from the tube they put in to keep you breathing during surgery does not pair well with a healing surgical scar. Inside and out, my throat is unhappy.

I am grateful for all the love and support. Having aunts wave me off and promise to keep Jon in line was a sincere relief. My mother-in-law has been checking on me every day for the past two weeks. My dad and sister are cheering for me, and the family I got to pick (my closes friends) have been magical. Even long-distance loves like my cousins and Aunt Rachel have been a vital portion of my cheerleading section.

Thank you with all my love and gratitude for the wonderful cheering squad. I was more scared about this surgery than any other. It's been a far more difficult recovery than I expected. Hopefully I can rest enough, and get my healthy legs underneath me. Looking forward to more rest, and healing. I think I may stock up on scarves for my neck, though. Feeling a lot like the Monster from Frankenstein's lab isn't my idea of awesome.

Tuesday, January 5, 2016

One Hell of An Example

Today has been the perfect, breath-taking example of what my life means now.

8:00 am - seeing a doctor. I was told it was a quick follow up. Half an hour, maximum. I go into the appointment daydreaming about what I'll be able to accomplish at work today.

9:00 am - I'm exiting the appointment, being ushered to the "set up" window. I'll be setting up the laboratory tests that have been ordered, so we can explain what I thought were normal, not worrying symptoms which now have raised The Eyebrow of Concern. Great.

9:15 am - The doctor I haven't been able to get an appointment to see is called. His staff apologizes for my inconvenience. I am given an unexpected appointment this afternoon, at 4:10 pm. I'm also given a second appointment this afternoon. It's starting to dawn on me that my day at work is gone.

9:20 am - I'm scheduled for a CT Scan on Friday. With contrast. In the middle of the day because that's all they have. I'm given the prep (barium), the instructions, and wished well before I'm sent to get my laboratory testing.

11:30 am - I'm sitting down, trying to remember who else I need to call, or text, or whatever. I have to take Phenergan (anti-vomit medication) because I've been swallowing, trying desperately not to throw up. I am aware that I will be asleep by 1 pm, but I will not be driving at that time, so I'll be okay. I drink water, have some popsicles and try, in general, to settle down my stomach. I'm not winning.

(other appointments you really don't want to know about)

4:10 pm - Checked in, sitting quietly in the waiting room, taking notes from my day. I'm not seen until after 4:30, but that's not terrible. The Doctor was more personable than usual. He raised The Eyebrow of Concern, after realizing I've been missing for 6 months. He explains that he wants to perform a twilight anesthesia requiring procedure, because he's concerned about what's going on with me. He's coordinating with my liver specialist, and will be forcing me into his schedule this week. THIS WEEK. This week.

ADDED BONUS: I have been presented at Cleveland Clinic as a "remarkable" case. Per my endowed chair of a physician: "Jess, you are an outlier. Completely."

I did not get home until after 8 pm. I've submitted paperwork for my job, done ALL the dishes in the kitchen and had a shower. I am ignoring all other adult things at this point because my ability to cope is gone and I do not give a damn.

I will not be able to eat until this weekend, except for popsicles and juices and jell-o and air. I'm not happy about it, but I'll take it as easy as I can if it helps keep me out of the hospital after all this irritation. I anticipate sleeping through the weekend.

This is a normal week. This isn't even a BAD week.

This is my life.

Friday, December 11, 2015

My Letter to Santa

Dear Santa,

It's been a long time since I've written to you. I wouldn't write you, but I think we need to talk after the last few years. Time seems to always be a friend to you - I hope 2015 has been no exception.

What a year! The list of things I am grateful for grows stranger every year. Doesn't make me any less thankful, though.

I can't ask for much this Christmas. I could write you about the obvious things I'd ask if I could have anything in the world - another Christmas with my Mom, and my brother; fewer complications; more answers to medical questions; less pain; less costly medicine. I could ask for a body that isn't falling apart, or organs that are more stable than the ones I have.

I'm not going to ask for those things. In some cases, I don't want to know what the alternatives are. If my Mom could be here, but she'd be in pain I wouldn't wish that on her. If my body was 100% healthy, but I wouldn't have my husband, I'll take what I have.

Please don't mistake this as a bragging letter, Santa. I'm basically a coward - I am more comfortable with the known than the unknown.

That kind of leads me to my request for this year. Santa, if you get the chance, surprise me.

You got me right, Santa. I want an adventure. My life, hopefully, has been about satisfying a level of curiosity often drummed out of children by the time they're 10. I adore learning, experiencing, adventuring. I want to keep seeking out new information, new places and people, new horizons.

I know I'll be adding to scars in January of 2016. I know there will be a lot of hard moments in 2016, just as there are in any life at any given time. I want to add other things too.

I want to add memories I'll cherish forever. I want to add delight to my friends. I want to add quiet moments of support and kindness to the people around me who need calm, a safe harbor from the raging squalls of life. I want to laugh uncontrollably, I want to feel unabashedly happy and I want to share all of it.

Santa, I would ask for selfish things if I thought they would help. I would ask for my scars to become less hateful in my eyes. I'd ask for my organs to hurt less, and to stop the swelling/ edema all over me. I would ask for a replacement for the wedding rings that have to be cut off my finger because I can't remove them anymore. Honestly, though, I'd rather have a walk by the lake with a hand to hold and maybe some fire-roasted marshmallows.

Santa, send me friends throughout 2016. Send me faces I love and miss, lifting up my soul. Send me great books and great food. Help me dwell in the best parts of 2015, and help me heal the torn pieces too.

I know you have a lot on your plate, and I certainly want all my family's wishes fulfilled. I hope you can work on my request, but if that doesn't happen I'll understand. I cannot ever express how humbled, how thankful I am for all the wonder and magic my life has already contained.

Travel Safe, Santa. My love to your reindeer, Mrs. Clause, all the elves and yourself as well.
A Big Fan from Way Back,

Monday, December 7, 2015

Holiday Thoughts

What has been going on since September?

It's a serious question, and life insists on making my answers to any such question either completely mundane or befuddling extremes.

In the weeks before Christmas, I'm watching favorite movies while readying our home for the holiday adventures. My doctors had to double my immunosuppression medication, so I won't be able to jump from party to party, but there are small groups I'm thrilled to meet up.

I'm meeting a surgeon this week. Perhaps surgery on my neck, before the end of the year. Once I know more, I'll share more.

I've been watching memories, wrapped as holiday cheer. One of my absolute favorites of all time, as anyone who has seen me in a Christmas skirt in mid-October baking Christmas Cookies can attest, is "Christmas in Connecticut." Barbara Stanwyck? Yes please! Uncle Felix getting words completely wrong, in his sweet little accent. I've never laughed harder - a grown man accusing a baby of "eating" a pocket watch!

Our tree, all two and a half feet of tabletop glory, is bedecked with cute "lodge themed" ornaments I love. Don't get me wrong, I'd love a wood-shavings bear, but the hedgehogs and antlers are sweet. Can't wait to get the extension cord so that we can light it up! The presents I've purchased are wrapped, there's a filled stocking on the floor (too much weight) and I'm thrilled about the other trinkets looking so adorable in their wrapping papers under/around the tree.

I adore the holidays. I know there's a ton of sadness I could be addressing, and politics galore. The reservoirs of my heart are depleted so much from this year. Be a source of joy for others. Lighten the load you carry - let go of hate, anger, jealousy, greed. I will not travel in darker places, there is too much beauty in the light.

Sunday, September 20, 2015

63 Degrees and Fancy Free

A beautiful Fall day is thrumming along outside my open windows. I can smell cookouts, and the beginning of my neighbors' nights outside with their chimenea. Heavier sheets are on the beds, thicker lap quilts dot the furniture, wherever a book and hot chocolate are likely to coincide.

While cleaning up all I let slide while I was in the hospital throughout July, I wrote some letters and emails in response to the indescribably healing cards I've been sent, either for my health or the passing of my family members. If you haven't yet gotten a thank you, I am trying.

Last night was delightful. An adventure in the Charity arena, rum tasting the hook and the cause Animal Hospitals in the area. I confess unreasonable love for the Pirate Name with which I was bestowed - Dread Arse the Well-Endowed. I can affirm and attest that I did not come up with that myself, nor did my husband who was saddled with Dread Curly the Well-Endowed.

Today has been full of old friends finding me again, cleaning up the dusty remnants from summer as I welcome the first of my two favorite seasons, and preparing for a full week by getting lunches ready, organizing the dinner menu. I am doing my best not to overdo, but I am also taking full advantage of feeling better.

I'm delving back into my writing assignment (self imposed), and sipping the tea I made earlier. I might read the second book in the series Nikki sent me (best friends really are the best, for ore reasons than I can count), or I might find something else to do around the house this evening. I feel encouraged that I have energy that's lasted into the evening. I feel hopeful that the symptoms lessened by this new aggressive treatment continue to dissolve. I am taking advantage of this reminder- it's nice to feel like myself again. I'm grateful for this time, however long it lasts.

I wanted to share the happy things - what my friend Jordan calls "YES! moments." There are bumps, and less easy things too, but today they are falling away easily, and it's important to hold on to that.

Thursday, August 27, 2015

Such Strange Days

So many strange days.

I've been sick most of this summer. I've had days of fun, of joy, and of wishing I had enough energy to get beyond the couch in my living room.

My medical team has been working hard to try to figure out what is wrong. One set of specialists felt it was Celiac's Disease, so I went on a gluten free diet. Another set of specialists were concerned by warning signs that my liver was being damaged.

Summer is close to over. Today I'm no longer on a gluten free diet, and my belly has never been happier.

I also have an answer for the pain, and the damage, and the tests that showed something far more aggressive than my other diagnosed problems were - autoimmune hepatitis. My body is raging so hard to fight whatever is wrong with me that it's fighting my liver pretty hard.

It's okay, though. I have medicines that will help. I already feel much better based on the diet change, and I believe these medicines will improve all my issues, not just the current state of my liver.

Going slowly is what is most important for me right now. Not trying to do too much, not trying to expect too much of myself. Thankfully, I have an incredible support structure. I am so lucky to have the friends and family I do. I can't express how much my friends have saved me. My spirits, my hope, my heart - even with two pieces missing.