Tribute to a Life Lived Fully

We are saddened to tell you that Jill passed away yesterday (January 20, 2013). The years of treatment followed by graft-versus-host disease finally took a toll too great for even someone as strong and determined as Jill. You can find Jill’s obituary at the website of the Memorial Funeral Home in Columbia Missouri.

Those of us fortunate enough to know and love Jill will not remember the cancer and illness but rather her strength, determination, generosity and thoughtfulness. Jill did not let her disease and poor health limit her. On the contrary she found more strength, more wisdom, and more ways to connect with others. She developed an extraordinary appreciation for and philosophy of life.

Jill lived a full life. She endured more illness and pain than many do in much longer lives, but more importantly she touched more lives, did more good, and inspired more people than most people ever could. To some she was a lively, witty cousin, niece or friend who brightened their days, and enriched their lives. To others she was a seasoned veteran of cancer treatments who convinced them that there was hope and that there was dignity in their battle no matter what the outcome. To another group she was a caring and understanding counselor who drew on her enormous wisdom and experience to find a unique way of seeing problems and finding solutions. Her illness did not limit her—it was a source of much of her wisdom and strength. To her family she was all of these things and more.

In her last blog post less than a month ago, Jill sensed a need for change. She wrote that her health was stable in an unstable way and that she had decided to repurpose the blog. Instead of recounting the recurring bouts of illness and subsequent recoveries she would share quotes that had touched or amused her. I want to end this final blog post with some of the quotes that Jill had collected over the years. I think you will agree that they offer insight into the beautiful person that Jill was. The world is poorer for her passing, but much, much richer for her life.

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Everything can be taken from us but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances; to choose one's own way.  -Victor Frankyl

First keep peace within yourself, then you can also bring peace to others.  - Thomas A. Kempis

Keep your face always toward the sunshine and shadows will fall behind you.  - Walt Whitman

Let there be many windows in your soul, that all the glory of the universe may beautify it.  - Ella Wheeler Wilcox

Always know in your heart that you are far bigger than anything that can happen to you.  - Dan Zadra

Those who bring sunshine into the lives of others cannot keep it from themselves.  - James Barrie

Everything in the universe has rhythm.  - Maya Angelou

Life isn't about waiting for the storm to pass; it's about learning to dance in the rain.  - Unknown

Something a little different.

I have decided to repurpose this blog.  I am clearly not updating this enough and I know why.  My medical status is not interesting and I'm tired of thinking and writing about myself.  My health is somewhat stable in an unstable way and that's enough about that.

I will use quotes.  I like quotes because other people seem to be able to say really good things without using too many words.  This quote I swiped from the bottom of someone's email.  I can't remember whose, but I think it's someone involved with Team in Training.  Anyway, here it is:

"There are two ways to live your life.  One is as though nothing is a miracle.  The other is as though everything is a miracle." --Albert Einstein

I think this makes sense as we move through the holiday season regardless of what, how, and who we celebrate.  I don't have much to add.  I know people who fall into each category when it comes to miracles; I think this is a really good time to examine each option and make sure that I remember to consider life accordingly every day.  I encourage you to do the same.

Happy holidays!  (I think it is a miracle that people still follow this blog.)  Love from Jill

Nine

years since I was diagnosed with Hodgkin's Disease.  I'm still kicking!  :-)

A little summer

It's so nice to have finally had a few weeks of nice summer weather.  We had quite the hot, dry spring as did much of the United States.  Everything is pretty dried up, but it's been nice to enjoy temperatures in the 80's (mid 20's C).

It's been a busy few months.  I had hoped to visit family in Canada in July.  I had to cancel but wanted to try again in August but had to cancel again.  My lungs have been doing their thing again.  In mid-July I had about a liter and a half of fluid drained off each lung.  After that I had continuing pain and shortness of breath.  It seems that my GVHD is busy again.  It was also affecting my mouth and gut.  So my prednisone has been increased again.  The breathing seems to be improving but my gut is still not happy.  I've been busy with appointments and scans and things.  I've been feeling fatigued, too, so I spend a lot of time resting these days.

Otherwise, things have been good.  It was nice to see Harley, Amy, Will and Elise in July.  They and Dad were able to visit in Canada in July.  I'm glad for them and I'm hoping to get there yet this fall with Mom.  Turbo and Kishka are doing well and do me a lot of good.

Thanks for checking in.  Jill

Up, Down and All Around

Aackkk! I can't think of anything fun to post. We have had a very nice spring here in the middle of Missouri-a rarity. Usually we skip straight to summer from winter, but this year temperatures have been moderate since March. I'm very thankful.

Parents are good. Mom was able to make a rush trip to Canada for the hospitalization of a family member and the funeral that followed. Dad will be busy with travel this summer. Harley and his family will visit at the beginning of June-not so long from now, come to think of it. Kishka and Turbo are well. Turbo recovered quickly from a neck strain and is happy to have had a change in his food. Kishka has been longing to go outside and is a little bit freaked once she's there.

Sadly, I lost two people I care a great deal about to cancer in the last couple of months. It is a brutal and merciless disease. The only consolation is that these two are no longer suffering.

And I am as I always am; up, down and all around. My spirits are good, and my body is giving everything it's got. I looked back over my records since my last post to see what I have been up to (I tend to forget these things pretty quickly). I had about a liter and a half of fluid out of each lung, started on a research protocol for GVHD in my lungs in St. Louis (because I have had trouble breathing), and began treatment for the lymphedema in my right arm (backed up lymph fluid that causes swelling)in March. April was good healthwise. I continued with lymphedema treatment, had no fluid drained from my lungs and felt very well. May started out well but I ended up with cellulitis (an infection) in my right arm. I have had to take time off from lymphedema treatment and let it rest from the bandages and sleeve that keep it in check, so some of the swelling has returned. I am on four antibiotics now and my body is protesting. I look forward to getting off those and back to a more normal diet.  So the rollercoaster continues and I'm holding on,trying to make the best of the ride. Life is good.

I hope all of you are well and that you enjoy your summer (or winter if you're in the southern hemisphere!).  Jill

How did it get to be March?

Wow! I can't believe it's been more than two months since I've posted. It's been hectic. I guess I just didn't notice time going by--a good thing I guess.
I continue to ride the recovery roller coaster. I've been in and out of the hospital a little, but overall I'm doing well. I'm just fighting some swelling, blood clots and trouble breathing. Nothing new for me. I can see now that I could be dealing with all of this for a while.
I am more concerned about all of the people I see around me who have cancer. So many people I care about have been diagnosed since I started this journey and it seems that my local clinic just gets busier. My thoughts, prayers and heart go out to my friends fighting cancer. To everyone, please take care of your health and keep on top of anything that doesn't seem right. Finding cancer early is so critical to beating it.
Thank you all for continuing to follow this blog. Be well and take care.

A lesson for me

Typically when I post to this blog I wait until I’m doing well and then highlight the good things that are happening and I briefly mention the problems that have resolved. I think I have avoided mentioning the struggles because I believed that eventually they would just go away. Now it seems to me that maybe it would be helpful if I were a little more open about alll of my journey because the struggles aren't just going away.

Since I received bone marrow from my mom in January of 2008 I have been dealing with the fact that my new immune system doesn’t recognize my body and wants to attack it. As I have mentioned before, I am on immune suppressants which make me more vulnerable to all sorts of infections. In addition the immune suppressants have some nasty side effects. As a result I am on medications to fight the bugs and address the side effects.

My doctors in Seattle want to get me off the immune suppressants to prevent these problems, reduce the number of medications I’m on and help me lead a more normal life. So every six months since the transplant the doctors either lower the dose of my immune suppressants or try to switch me to a different type. Unfortunately my body is not ready. So every six months I have a little crisis that lasts one to a few months, I recover and we try again.

Starting before Thanksgiving I had one of my crises. My immune system was attacking my gut, my lungs and my skin. For a couple of months food ran right through me, I had increasing difficulty breathing, my arm became infected and finally I caught a cold. Antibiotics took care of the infection. I got over 3 pounds of fluid off my right lung. My doctor here bumped my steroids up high and that took care of the gut stuff and seems to have slowed the accumulation of fluid in my lungs. And after more than two weeks of rest I am almost over the cold, my body is digesting food, I'm breathing well and I have some energy. Now that I am stable my doctor is slowly tapering my steroids to my previous dose.

I am thankful for the relief and feeling much better since I have accepted that all the struggles aren't going to just go away. I am moving forward, focusing more on the quality of my life rather than trying to get back to a place I cannot go.

Thanks for checking in on me! Take care.