What I'm Up To

It's 1AM and my rooms are filled with the huffs and poofs of dedicated sleepers. It's that solid time of night when I could vacuum, pick up the bed and re-make it without waking up anyone. I'm usually right there beside one of my boys enjoying a solid sleep but tonight is different. I've done all the right things but I just can't get all the way to the sleep part.

Is there anyone out there anymore? Does the return to normality and the navigation of recovery from liver transplant, return to work, raising a three year old and guiding a husband who just watched you die and come back to life back into a normal marriage contain a story? Every day I am awakened by the surprise that humanity brings to life. People's stories, their laughter, their anger and emotion, their fears and even the things that people choose to wear. Everything has a new amusement and hold genuine appreciate for me now. Every day I get to see a friend for lunch or a playdate is a day that might not of been. Although that tone is being replaced by the joy of seeing a person and being to share a normal healthy experience without having the compromise of illness to be in my way. WHAT A MIRACLE!!!!!!!!!!!!

I have returned to work. I am an official inhabitant of cube world now. I am a voice in the egg crate as my dad used to say.

I am eager with excitement the night before a work day. It is an adventure I wasn't sure I'd ever get to have again. Nate's jaw dropped the first time he saw mommy all gussied up for work. He gave me a standing ovation and picked out my pink high heels. They didn't exactly match but who's going to turn down such a participation!?

It has been a humbling and joyous ride back into the saddle where everything is changed and nothing is different. I am being trained by my students and sitting with my future co-workers who do the job I will one day do if I can ever work full hours again. They work with the seriously injured or psychologically impaired. Their days are filled with the need for compassion and endless patience, negotiation, balance and tolerance. I am learning how to change an address in the new computer system. A very simple but just as necessary task!

I hear my friend guide a man through the emotions of returning to his home for the first time without the leg he had before he'd gone to work and lost it in an accident. Will this get to be my job? What will it be like for me to talk to these wounded people? I have felt their pain. I have had to bend my life, be broken and rise again. It is best I heal and wait for now but I can feel the froth forming at the bit and my pace is picking up to a steady canter.... Slow and steady I keep telling myself.

The docs at transplant have got my headaches under control (transplant meds can trigger migraines) so life has gotten a lot better in the last 2 months. My/our liver has accepted it's new home very well (knock wood). My overall score hovers at about a 38 which usually takes years to achieve. I can only believe it is because of the relationship between myself and my donor made the body that much easier to receive the gift. My kidney's are tolerating all the toxic meds that I take every day very well which is one of the hurdles of the first year of transplant. My biggest irritation has been this very deep chest cough that has required 3 rounds of antibiotics and puffers every day. My donor has chronic bronchitis so we don't know but it's a possibility it may have transferred through her blood! Anyway, it's been really difficult to get rid of with all the anti-rejection medications so I sound like I have tuberculosis. Gives me a whole new empathy for my friends with asthma or breathing issues. You have my prayers! So far I have been very lucky to avoid any of the very common pitfalls of the first year especially because I received a very small piece of living donor organ. So, thanks to your prayers and all the extra rituals (you know who you are! :-) I am alive and kicking.. THANK YOU sincerely from the bottom of my heart, soul and toes to my nose.

I am so grateful to Meghan for her sacrifice that allows me to graduate from surviving surgery to watching life and now truly participating in it. I can wake up with my son, stay awake all day and put him to sleep at night, I can slide, swim, work, iron, bake bread and have dinner on the table on time. Sometimes I have to pinch myself. I will never forget what I've been through and the pain of the surgery is still very fresh but that girl I thought I might have lost was only wearing her safety gear. She's very much alive and well. I feel my old self rise as the fatigue, pain and memories sink and fade.

Meghan- I hate that you itch and I don't want your blood cells to be smaller than they should be. It's not fair for you to have aftermath from your heroic gesture. I know we will find the answer. I pray for the resolution every day. I know you say you aren't suffering and we never lie to each other so I take solace in that. Much love and THANK you for my life that wouldn't have been without your brave decision.

oxo to all and I MUST GO TO BED!!!

Bon Nuit!

Michelle

Past The 6th Month Mark!

First off, thank you so much to everyone who contributed to help Miss M in her return to work process! She is now back to work full time! She reports lower then normal red blood cells since the surgery but we are hopeful this will change under her doctor's care.

Michelle has been a pretty sick chikadee for over a month now. My initial over-the-phone diagnosis was pneumonia, but a trip to the hospital turned up a negative chest x-ray. Many days of green sputum, blood oxygen levels below 90%, antibiotics, gasping for air, and numerous trips to the ER for breathing treatments...Michelle is finally rounding the bend. The bizarre thing is, Michelle was not really one to develop chest infections, let alone one that makes her lungs seem so chronic. Albeit, she has poor immunity now that she has to take anti-rejection medication daily to protect her new liver, there may just be another piece to this story. According to the transplant team, Michelle was told she is the only BC resident to receive a live-donor liver transplant from a non-relative. I've read stories of people receiving transplants and picking up habits, food cravings, or conditions, etc that the donor experienced. Miss M. has a history of bronchitis. Coincidence? Potentially interesting; how much information and power our little cells carry, even when they are outnumbered in a new body.

Another interesting tidbit, and great news for people who are offered the gift of a live-organ donation from a relative. BC transplant told Michelle they have had no cases of rejection from live-donor transplants when the donor-recipient dyad were relatives. Again, Michelle has been told she is the only person in BC to receive a non-related donation of liver from a living donor. Michelle experienced some complications of rejection in the beginning of her recovery. This is thought to support the idea that living, related donors improve the odds of the transplant being a success. Michelle and Miss M are contributing to science that will potentially lead to a better understanding and further advancements in organ donation!

Phew, that was a lot of medical stuff, I hope I got it right!

Please continue to keep Michelle and Miss M in your prayers. Michelle just passed the 6 month mark post-transplant, she's definitely on her way!

tracey

*Keep your eye out for Michelle and Miss M in a future Reader's Digest! I will let you know when it's available!

Making It "Work"

Michelle is doing pretty great! Starting back to work at 6 months post-op is such a big feat, and she's genuinely excited about it. The Ways are working hard to keep themselves afloat and be independent. They will be forever grateful for all of your help this past year, but are now hoping to adjust to their new life and make it on their own. Thank you friends!

Miss M. is also doing well, but unfortunately is not entitled to the same financial support in her return to work program. Apparently employment insurance here in BC only gives you 15weeks coverage, even if you've given up half your liver. Miss M. has made a valiant effort to return to work full-time, but has thus far been unable to tolerate this schedule. She has had to cut back her hours until she is stronger. Miss M. has given our Michelle an amazing, self-less gift. We are now turning to you dear friends to help us help her in her recovery. We are collecting donations, and considering a fundraiser to help top-up Miss M. until she can return to work full-time. Donations will be accepted through our paypal account or via cheque to the Michelle Way Trust. Please quote Miss M. in the memo of your cheque or on your paypal donation so that any funds coming in will be directed to the appropriate recipient.

We know times are tight, but we wouldn't ask if we didn't feel it was for a good cause.

Thank you for all the continued support!

tracey

I Can Wear High Heels

Wow! Now that I've come back to life I see that there's a lot to this living business! How did I fit it all in before? There's so many people to love and relish and so much laundry and cleaning and driving and working and cooking to do! I take my hat off to all of you who do it so beautifully. I have suddenly found myself facing all these tasks with delight and surprise. It is a wonderful discovery to find myself a mother, homemaker, employee, friend and daughter, niece and cousin and all the titles I hold so dear. I didn't realize how small my life had become- how narrow my focus. I am forgetting my tired and scarred self to rediscover the new life that is pumping through me.

I can hold my son. I can ride my bike. I can wear high heels. I can eat first, second and thirds. I can sleep on my stomach and dance with joy. I can cook for my family and get to wipe up the floor when something spills. I'm going to work in a cubicle again. I'm going to earn a paycheck 2 weeks from August 4th. I'm ALIVE! Time is allowing the memories to fade.

My docs have described my test results and gorgeous and beautiful. My body is absorbing this gift of life with delight and exuberance. I am treating it with reverence- as my dearest friend. Thank you dear Meghan. I pray for continued grace and good fortune for us both. My soul was restored to witness your strength and vitality. I pray that our bodies continue to mend as the impact of this trauma fades to allow the beautiful vision of our futures. I cannot wait to behold the next chapter on your wedding day.

To all of you who have held me in your hearts and prayers. I will always know that it was the strength of your intentions and the sincerity of your prayers and hearts that kept me here, that has allowed me to pass through this immense ordeal without having succumbed to it. Every day is an answered prayer. Thank you.

And Then There Were Three

Michelle and family continue to slowly try to put the pieces of thier new life back together. Mama bear is heading back to California after many months at her daughter's side. It has been a long time since the Ways haven't had someone in their home to assist with keeping the house up and helping with Tater tot. It will be different. New challenges, but also a time for the family to reconnect on a new level. Tater tot will continue to be in daycare a few days a week to allow Michelle much needed rest time. Michelle is also using massage therapy, chiropractics, and acupuncture to help manage her pain. Unfortunately surgery hasn't been a cure-all, but Michelle knew this going in. It HAS provided hope for a better future. Michelle is only 3 months post-op, and her doctors suspect 1-2years for a better idea of what her recovery will look like. Her body continues to embrace her new little liver, her rejection scores are good.

I see Michelle getting stronger all the time and it's wonderful! Praying for her comfort and continuous healing.

We'll miss you Jer!

tracey

The End and Once Upon a Time all at once

The sun streams in through the window after a wash of spring downfall. The air is fresh with the new soil and flowers of hopeful gardeners. I've just pounded the last of the little fragile sprigs into the ground. Those little saplings are of kindred spirit with me. We are both going to hope our new life digs deep and solid roots that will sustain us. This will depend on a little bit of luck, careful care and a lot of love. Love is what sustained me through this then and now.


Speaking of love, my mama is returning home after being with us for 6 months. Jack arrived last night to drive her home in a few days.

My mama is gram-ma-ma to the Tot. So, for all of us, it is the end of an era, and a new beginning. I will miss hearing her happy voice that accompanies the Tot's giggles. I will miss our long chats and the friendship we share. Thank you mama for wrapping your heart and arms around my little guy when I couldn't be there. Thank you for standing by me and never holding your sacrifices over or against me. Thank you for your timeless and unconditional love. I love you with all my heart.

I hope you will set yourself free now. You have crawled through the trenches and faced death with me and welcomed our new life. This has been an endurance marathon and I have tagged you out. It's your turn to live your own life now. I have to run the rest of the race without you by my side so that I can find my own abilities again and discover new strength.

Thank you mama and Jack for putting your lives on hold to help save mine. I love you both.

Michelle

Putting it all together again

Here I am again. It's dark, quiet and all the rooms are filled with the rise and fall of sleep. The veins in my thin hands shine up at me from the keyboard. The only light that fills the space is the glow of my monitor. I am here tonight because my mind is wakeful. I cannot seem to find the sweet spot of peace.



My lifetime so far has been freckled with joy, adventure, extremeties of trauma and privledge and everything in between. The constant has been my ability to fall in love with life despite it's circumstance. This February, for the first time, I fell out of love with life and it almost killed me.

In the week that followed my liver transplant; my body was in screaming amounts of pain, I couldn't eat, my skin smelled from the toxic drugs and I vomited through the incision that spread from my breast to my hips. I was dehydrated and my veins were drying up so they couldn't adminster IV. I would need another hose in my neck to mainline fluids. The overwhelm and the pain came out of my mouth as I told the surgeon I needed to give up. He yelled as I hung for life on the edge of my bed and gasped through the pain, "you fought harder then anyone ever has to get this surgery. We do not give these to everyone. You owe it to your donor, the people who never got one and to the people who will die waiting to FIGHT now."

I felt the sting of shame and knew, at the same time, I did not posess the strength to fight. I thought, "Can't he see we have reached the point of no return?" However, given the lack of options he was presenting, I assured him I would re-engage the fight.

As I listened to his footsteps fade down the ward, I assessed my energy to make good on my promise. It was negative 200 and falling fast. I felt failure was a guarantee. At least I should warn my family. I did. They did not take the news well. They called for help and it came in the form of an acupuncturist who was willing to come to the hospital. He took down the cards that lined the windowsill and removed all my pictures. He took everything off my side tables except my water. Everything was too big, life was too demanding, the love I felt for the people in my life was incompacitating. He told me to focus on the very small. Eventually we narrowed life down to my son's fingernail. He told me to focus on that to keep the ember of life alive within me. It was important to keep my spirit and mind alive while I could not control anything physically. A fingernail I truly loved was truly all I could handle.

For 3 days I visualized my baby boy's fingernail, then finger, then simply his beautiful hand. I repeated "mind over matter" under my gasping breath for 3 nights and 3 days. I yelled at myself as I vomitted up my lifesaving drugs. Finally, on the 3rd morning I believed myself and held down my medications. I announced my new resolve to my family and the doctors who were overjoyed. 2 hours later, my blood work returned and I learned that my liver was in rejection. Here was the true test. But the 3 days of hardwork had paid off and my resolve was solid.

My committment to life hasn't wavered since then but the experience still affects me now. I see pictures of myself before I was sick and there is a lightness to my smile, a joy of spirit. My spirit still suffers from the prolonged illness and the shock of surgery. I miss the girl I was. I hope she's just hiding and not truly and forever changed. I don't want to be so tired, so easily overwhelmed, so inept at the simple things. Life will always be a gift that was given to me- forever. My heartbeat is a gift. Every word I say may never have been. That very fact continues to humble me, amaze me and bring me to my knees. Is there a normal in my new reality?

With gratitude and always love,

Michelle