Ahhh.......

I returned home from a very relaxing vacation up north at a charming lakefront cabin with one of my closest friends. I feel refreshed and relaxed. We had a wonderful time.

Prior to leaving I was rushed to the hospital - I had collapsed and my family called 911. I was severely dehydrated and spent the evening in the hospital having tests, etc. My liver has deteriorated significantly since the last CT scan 2 years ago and is now showing that it is fully cirrhotic; it's time to begin thinking about a transplant. I am going to ask my doctor for a referral to a doctor in Detroit who specializes in Hepatitis C, liver transplantation and has been involved in clinical studies for new treatment options. For the first time in a long time I feel as though I have hope. Just a sliver, but hope nonetheless.

In the meantime I am taking good care of myself and feeling very blessed for my family and great friends. The upcoming week is our town's annual festival and we are over-run with tourists. I usually participate from afar as getting into large crowds is not only unwise due to spread of disease, but also because I have no immediate escape should I begin to feel ill. I look forward to the month of August with a bittersweet feeling; our youngest returns to college on the 27th and we will have our empty nest. I will miss having her around.
Have a great weekend!

Taking a break....

This will be my last post for awhile. I haven't been feeling well, as you probably already know.

A dear friend is coming to visit and we are headed up to her family cabin for a week of relaxation - just the two of us. The setting is a tranquil, rustic cabin on a peaceful lake. I look forward to a change in scenery and getting away from the stresses and responsibilities of home. She is a RN also and is more than capable of handling any health issues I might have while we are together. I will really miss my spouse and dogs but I'll be back on the 30th.

My best to all.....

P.S. Yes, that's a photo of the place we'll be staying :)

Decisions and ponderings

"Things fall apart; the centre cannot hold" ~ Yeats

I've made a few decisions recently. I am not returning to teaching. I barely made it through the last semester (I always take summers off) and I had to admit to myself I just can't do it any longer. My faculty partner is finishing up some research and wants me to help in ways I am able to do from home, so I agreed. The research is not affiliated with the university so I can still turn in my resignation. My few consulting jobs are enough for now and maintaining contact with my colleague is just perfect.

Thinking about my grown children and the idealistic views I had when they were all small. I envisioned this perfect little family who would always be close and we would be strong and have an unbreakable bond. Wow, was I naive. I tend to "blame" myself for everything that hasn't worked out in that perfect little scenario I created - I blame it on my illness. That's all I know; perhaps things would be the same had I remained healthy, nobody will ever know. Truth is, we aren't as close as I'd hoped. My husband and I are closer - that's a blessing. But the kids, they have grown apart from one another and from us, in varying degrees - of course. Examining my illness, once again I had an unrealistic view of how my family would behave; they would all surround me with love and affection, become closer as a family unit and give me an abundance of support. Duh, Sue.

First, it's normal for kids to grow up and move on. That's their
"job" in life as young adults (I DO have a Master's degree, which included alot of psychology and I should know this....Erikson, Piaget, Maslow, etc) but it's difficult to apply to those you love. I have four kids. They don't all get along wonderfully. They love each other, but at times do not like each other very much. They probably would not be friends if they weren't family. I get that. I've got one child who has done the things in my "perfect" vision as far as my illness goes, but the rest - not so much. And it's not their fault; they each have their way of dealing with how it affects them and their own pain surrounding it. One is taking a self-destructive path; one has turned feelings for me into anger; and one is still figuring things out. I love the phrase "It is what it is" and that certainly applies. I have to let it go. Release. Be thankful for the good times and appreciate the gems of a day, a week a month - I can't overlook that. And I gotta take care of me, be tender with myself and my spirituality and be filled with gratitude for my wonderful, loving spouse.

A prayer

Thanks to everyone who emailed me and let me know they are following....I know this is not simply going out into a black hole, although I think I would continue due to the therapeutic nature of having this outlet. Here is a poem; it's really a prayer. It's dark and sad, but it was cathartic:

This is the summer when it seems like everything has fallen apart;

the summer when the reality of a failing liver took root and the darkness of death came brooding.

The summer when [my daughter] set herself free, but chose the wrong course that will lead her into darkness. I can't go there with her; I can't walk beside her or hold her hand. She's chosen that too.

The summer when one bad day may have ruined what took months to build with [my son]; when I saw the pain and contempt in his eyes for something I have not chosen yet hurts him deeply.

The last summer when [my daughter] will be home and that level of mothering will no longer be needed.

The summer when I felt so alone; when I could not meet the expectations of those who do not walk in my shoes; a life of disappointment for those I've tried hardest to make proud.

A life, once full of vigor and light that is now dimming with days and nights filled with illness.

A summer that I believe will be my last. Many tears have been shed. I've done nothing good and caused only heartache and pain, and on occasion - contempt.

Please, oh god, take me home to you. I don't belong here anymore and I'm hard-pressed to think of one person who still wants me around.
Your humble child,
[Me]

Is anybody listening??

First, I am wondering if anyone is reading this blog? If not that's okay - it's therapeutic, but it would be nice to hear a word from you if you are so please let me know.

My youngest son has been home 4 days now and it's clear he is not capable of handling my illness. He's just can't take it and it's one of the main reasons I quit Facebook. He is my sensitive child; he is unable to accept my illness and can't watch first-hand as I deteriorate. He was up late last night talking to his dad, and well, he is just not capable of seeing me the way I am. I am no longer the bubbly, energetic mom who was fun and lively that he enjoyed being around. I'm now a tired, exhausted mom who spends a great deal of time in bed and he hasn't been here to see the progression. For him, it's like a dramatic overnight change. He is getting ready for a 5-week hike in Colorado and I asked him on Thursday, "How will we be able to stay in contact?" to which he replied, "you'll have to write a letter and we'll check in the towns as we pass through." At first I thought he was joking. All I could think is what if something happened and I need to get ahold of you; that is not going to cut it. I went up to my room and cried. I've told all the kids from day 1 that I do not want my illness to change their plans one bit; I want them to carry on with their lives just like they would if I were going to live to be 95. And I mean it; I WANT him to take this hike. I just wasn't prepared for essentially no contact. Am I being unreasonable?

But...here's what I've got going on: I am dying, slowly, of Hepatitis C. My liver has been damaged to the point I've now developed Type 2 diabetes and at last check (biopsy) I was showing signs of cirrhosis. I can't take many of the medications for these problems because my liver isn't working properly, so I have to tough it out. I've lost nearly 60 lbs in the past year due to illness. I am going through menopause. And....I'm facing my own death. Throw in a difficult extended family and I think I have a LOT on my plate. And I think I am doing well....not perfectly by any means, but I am doing well. In the past month I've hiked, kayaked, gone to 2 museums, had lunch with friends. I've also canceled as many plans as I've made. I have to take it day to day, listen to my body and take care of myself.

Truly, I feel like hello god, it's me - is anybody listening????? Am I just being one big ole wimp?

Parenting during illness

Wow, the last 2 days have not been good. I needed a day to recover from our 2-day trip and didn't get it because of my son's accident - I had to drive to the scene and help him out with al the red tape. I am so thankful he is okay. That's part of being a parent and I feel that for the most part, I'm a pretty lousy parent at his point in my life. My kids can't really count on me; I am too sick. I've been reflecting on that a lot. I was once a good mom, a GREAT mom actually. When they were little I took them everywhere and exposed them to everything - arts, music, animals, hiking, nature, sports - you name it and we were there. I worked every weekend and had weekdays off which was great because we never had to get day care. We were very proud that we raised our kids ourselves, and everything we did was as a family. I wish I could still be that mom, the one who could attend all their events, be there to help them with things, spend time doing fun things together, but I am not. The last 2 days I spent mostly in bed. Can't do much mothering from that vantage point. It's a huge loss for me.

One of the things I did while I was on treatment (our youngest was in high school) was to make my husband go to all of her sporting events. He never missed one, home or away. While I was sad I couldn't go it was my way of supporting her and I'd arrange to have someone come over when I was too sick to take care of myself, but most nights I just toughed it out. He'd call me at intervals to give me an update (and check on me, of course).

It's very difficult to be an effective parent when you are ill. Your kids cannot count on you. Sometimes, you feel invisible because everything is going on around you and you're just in the background ("the sick person"). This has been extremely difficult for me, probably THE most difficult. And I realize how hard this is for them too....they handle it in their own ways, sometimes well and other times not so well but they hurt too. They must. Going to try my best yet again today.

A big scare

My son was involved in a serious car accident while driving home from his hiking trip in Vermont. The accident occurred only 7 miles from home. In Michigan there is a saying, "there are two seasons in Michigan; winter and road construction." He was stopped on the highway in a traffic jam at a road construction site; the driver behind him was not paying attention and rear-ended him without braking at all. The impact sent him into the guardrail which he totally destroyed but thankfully it prevented him from going straight into incoming traffic. He got a pretty good case of whiplash and is pretty sore, but okay. His car is ruined. I am just so very thankful that he is okay. Also, I would like to have something really great happen to me! Like tonight or tomorrow!