A Fine Balance Between Hospital and Home

3 days. The size of a twoonie. Mind bending pain. What is this?? Scared to call. Should find out. What if the aneurysm in my spleen has burst? What if it’s nothing? I’ll wait a bit longer. Take a walk with my son. It’s not going away. I’m at the bank. Got to pay the nanny today. Can’t see the buttons through the pain. Just keep talking to my friend. That will make it stop. Okay. It’s time to call. If I call while I’m walking to the shoe store the news can’t be that bad. I come to these absurd conclusions on a regular basis. Dr. E is there and will take my call immediately. A rarity in itself. I’m standing between the infant and toddler shoe aisles and he tells me the pain is almost certainly related to the fact that my spleen has gotten too big to receive adequate blood supply. It has likely started to suffocate and die. The pain’s location tells him that it is likely the first spot. He tells me the pain can only be controlled in the hospital through IV analgesics. He will get me a bed today but I will likely be there until the transplant surgery. Well, we all know how I feel about long stays in the hospital!! There will be no caging of this butterfly today. He says I can stay home as long as I don’t develop fever.

It’s been a week since then and so far so good. I have befriended that hot spot just beneath my rib cage. It represents the fire of my will. So far I have not lost my mind. It is truly amazing what the body can become acclimatized to. I am so grateful for all those books I read in childhood of those ancient crazy Tibetans and great spiritual leaders who subjected themselves to physical torture to learn that there is something prior to pain. There is always inherent brightness, light and love within. We just have to tap into it instead of the pain. On the days I can’t find the brightness I lay in bed, whimper to my mom on the phone or take a dreaded pain pill. Those little buggers make me so itchy and sleepless they are almost worse than the pain. And Dr. E was right- they don’t take the pain away anyway.

This same week I came home to an open letter on my desk. It was from BC Transplant and read a little something like this, “Your live donor has been approved. Your surgery will be scheduled for September 2009. Please complete and sign the enclosed consent form”. Gulp. My blood turned to ice and then fire. Wow. It’s official. I knew Miss M must have received a similar letter. How was she going to feel? There is something so powerful in seeing the words in black and white with letterhead. This is REAL. It took me 3 days to call her. I want her to know again that I am not entitled to this gift of life. It is her healthy body that she is choosing to lend to me. She doesn’t give me the chance. She says she wants me to know she’s gotten a letter (she doesn’t know I’ve received the same one). She says she wants to post it to the blog. She’s so excited. She says that now we will really be sisters. It’s time to shop for those matching jammies.

I don’t know why I’ve been given these peculiar set of life circumstances but they have shown me how truly wonderful and generous people’s hearts are. In these times of global and economic crises, people have opened their hearts and wallets and bodies to make my life possible. I am so humbled to have such beautiful family and friends.

To my dear Miss Tracey; you are a truly comforting shoulder, a valued confidante. Thank you for listening to me always and for your honesty. Thank you for this blog. Thank you for devoting so much of your valuable time to me and to my son and for all the fundraising efforts. I truly couldn’t go through this without you.

Thank you to all the members of the Way to Live committee. That you found my cause worthy of all those hours of your time and effort is truly heartfelt.

Thank you to my family for staying on this roller coaster ride with me for all these years. I know it hasn’t always been easy. I promise to get off the ride and play mini golf (a game that’s much more fun).

To my dear California brothers and sisters. Your long distance love and fundraising for me after all these years we’ve been apart is a gesture of love that will last a life time.

To my friends from work for sponsoring our family to make our Christmas and the mortgage payment possible. When there are so many needy families, thank you for shining your love and donations on us.

To my husband, who manages to stand by me through every unpleasant bodily function and tries to see me as his beautiful blushing bride anyway.

And, to my son, who is always happy to see me and showers me with love and smiles every day. You will never know how well you make me feel.

Thank you to my friends that have flown to see me once, twice and even 3 times. Your visits, massages, adjustments, walks and talks add years to my life and soul.

Thank you to my husband’s family who have wrapped their arms around us and supported us through these rapids.

And to Miss M. Words won’t do it justice. Nothing can. I’ve sent you something in the mail. It was all I could think of to let you know how you make me feel. I love you. We were sisters from day 1.

Thank you to all those I haven’t names who keep our family in their thoughts and prayers and to those who have seen fit to donate funds to support us through this struggle. I blow you kisses, send you hugs and shower you with flowers of your favourite color. Thank you for not letting me dance alone. Thank you for making this sometimes cruel life seem so much kinder. xox. Good night.

Michelle

PS
I will have an ultrasound on Wednesday of this week and we will get the lay of the land after that. In the meantime I picture my spleen receiving adequate supplies of whatever it needs and living strong. We can’t afford to lose any more organs in there! My next assessment at the transplant clinic is June 8th. My mama is flying in from California this Thursday so she will be there for the big day. I called and told her I was done being a big girl for awhile. Sometimes a girl just needs her mama. She was just waiting for me to say the words and booked a flight the same day. Now. That’s love.

Still Waiting

Michelle's pain is quite persistent, and (the rare times she has taken it) the pain medication seems to be causing some undesirable side effects. What is taking so long??? My sweet friend has days where she feels so awful and "toxic" that she describes feeling like she has turpentine coursing through her veins. I can't even imagine...

Thank you to all who supported the garage sale. We are hoping to have another pub night this summer, will post details when confirmed.

Praying for you always chickadee!

Tracey

A Shout Out

Our new feature song is in honor of T's kids. You are all sweet to be thinking about Tater Tot's Mama : )

Tracey

An Itch That Can't Be Scratched

Just popping in to give everyone an update. Michelle had one really great day this week, but things have gone downhill since. She is plagued with terrible pain that her specialist suspects is related to inadequate blood flow to the spleen. Not good. She is trying to manage the pain and nausea at home. Michelle took one of her pain pills today so that she could take little man to the local fair. A side effect of the pain med is itching, and oddly enough she often gets an itchy nose. She wiggled and rubbed her nose to try to find some relief, and always felt moments away from vomiting. I have stayed home for far less, she is such a trooper. She really did have a great time at the fair though. Little Man loved the rides!

Some members of our committee are throwing a garage sale fundraiser this weekend in Vancouver. There will be hot dogs for sale, and Michelle may make an appearance! Anyone who would like more info, please contact me at way-to-live@hotmail.com


Tracey

The Good And The...Not So Good

Michelle is very blessed to have her dear friend Lady R from California visiting for the next week. In less than 24 hours she received a professional adjustment and a massage! How great is that!
Unfortunately Michelle had a rough night last night. Her pain was so bad she ended up taking a pain pill, something she tries her hardest to avoid. The pill took the edge off the pain, but lead to increased itching : (. So the poor woman got very little sleep last night.
Wishing you an excellent visit with Lady R, and some peaceful sleep tonight.

Tracey

An Open Letter

Dearest Michelle,
I know you heart aches often with the loss of your father. Please believe that you gave so much to him in his final days and always. You may feel in hindsight that you could have offered him more in terms of helping him deal with his transition from health to peace, but in reality you were in the role of daughter, and all he really needed at that time was love and presence. Your love was as unconditional as ever for you father. Just as spring brings new growth, and fall brings new color and dancing leaves, you father will always be with you.
The word amazing can never be used too often in your honor. You bring light, laughter, and a feeling of acceptance to those around you. I know of no others who have brought complete strangers to tears and full disclosure, or with a simple letter have had thieves make a full return of stolen goods. I encourage you to continue dancing with others. You have brought an amazing little boy into this world who is going to do great things with his life. You have a strong circle of family and friends who cherish you. Please be assured that any wounds will be shallow and heal quickly.
Also know that if this makes no sense it’s because I’m supervising a 2yr old out of the corner of my eye : P
Love
Tracey

Written A Few Days Ago...

I lost my biological father to brain cancer on January 14th, 2007. January 14th just happens to be Miss M’s birthday. I have looked at his picture for a long time tonight. I just needed to see his face, remember his soft skin covered in a layer of fine fur. He was a snugly bear and I often nuzzled in to his big broad arms. I miss his comfort and his life.
My dad was a writer, an artist, a carpenter, a great thinker and wonderful confidante. I didn’t really know him until I was 21. Our strongest bond was friendship. Our minds, made of the same blood were of kindred spirit. But, he called me Kidlet. At the core of everything, I was his baby girl.
We often met downtown to enjoy the change in seasons or catch a movie together if it was raining. We always talked for hours. He wanted to make the world a more honest place. He championed the underdog and made them realize they could actually conquer themselves and the world. He could never do this for himself. He was an unpredictable rogue who often misbehaved I miss him every day.
He was sick for 1 year before passing away. During that time I became his manager of sorts and helped him keep his life together as he literally lost his mind. I was pregnant at the time. He wanted me to help him deal with the diagnosis of “terminal” because I had once been faced with the same life sentence. I couldn’t help him or “go there” while there was new life growing inside of me. I couldn’t really get down to the emotions and feel them with him. I was there for him on a practical level and spent many days and hours with him but I never really let him confess his fear, the pain and outrage, the injustice and frustration. I am so sorry. I know now how much I could have helped.
I have been dancing with illness for 13 years now. Sometimes I flit across the floor and sometimes my feet are swollen out of my shoes. Being and overcoming being sick has pushed me to make the rest of my life mean something to me. I have made choices along the way that strengthen my bond to people and this earth. Where I once danced alone I now have a husband and my baby boy. I have the most amazing friends, a career I truly love and am proud of and a piece of land with a vegetable garden! All my dreams have come true. I just hope that my choices will not cost the ones I love too much. When I let myself, I wonder, “Was it selfish to dance with others when it would have hurt less to dance alone?”
I am frustrated by the squeeze of illness on my abilities. I want to be free and strong. I am fearful tonight. There are so many blind corners ahead of me. I am a passenger in a speeding car without a driver. The blind faith that has led my life so far is the only thing I can cling to now. It is more of a refusal to participate in the undesirable than true courage.
I pray for brightness and life to surround my loved ones. I pray we take the corners with ease and that the road becomes less treacherous. I pray that I never stop dancing. I pray for healing of wounds my illness has caused. May my love continue to be felt.

Michelle

And The Results Are In....

Miss M. has been approved as a live-donor for Michelle!!! What does this mean? Well, if Michelle doesn't get a whole liver by a specific date, then they will go ahead with the live-donor surgery. This surgery is not booked yet, but they are aiming for the end of august/early september. This is great, because it is an opportunity for the Ways to see a light at the end of this tunnel.

Michelle is having a string of rough days again: nausea, pain, lethargy. Yet through it all she still manages to be the most amazing mother. I am in awe of all she does, and how she carries herself. She may not have a lot of energy, but she uses what she has so efficiently.

In planning our last pub night, I had a conversation with the project manager of the Organ Donation and Transplant Association of Canada. She informed me that a huge number of organ donations are lost because people do not tell their loved ones what their wishes are. Registering as a donor varies depending on where you live.
For more information in Canada, please check out: www.organdonations.ca
And in the United States, please check out:
http://organdonor.gov/about.htm (not sure if there is a better site for US, if you know, please post in comments).

Good night!
Tracey