A new day

I went to bed super early and spent a couple hours battling an awful lot of pain. Whew! That takes a lot out of me. But....I did sleep really well and woke up feeling much better and hopeful.

I think my pity party is over.

I'm not going to go out and run a marathon today, but hoping to get a few things completed. Helping my daughter get packed and ready for her sophomore year of college. After that comes a quiet, peaceful house. I will miss her but this is the way life is supposed to work; kids should become independent and we are pleased with her progress.

My day is off to a good start (for me) and I thank those who prayed for me. I'm looking out at the blue sky, the gentle cool breeze and the water of the lake and thinking about the cycles of life, the ups and downs and still learning (at my age) how to navigate this crazy world we live in.

August 17, 2010

I fell asleep right away last night and slept through the night, which was greatly needed.
I wish I could say I woke up feeling rested, but I didn't.

I think I am depressed.
Wait: I know I am depressed.

My husband and I talked a long time last night, about our lives, people, families and the challenges that lie ahead of us. It felt good to connect and for him to nod his head in understanding. Some of you might think I'm just a big 'ole whiner, but there are things going on in my life that I don't write here. I just can't - they are too personal and would be inappropriate to talk about others negatively behind their backs. You'll have to trust me when I say some of these things are HUGE. There are a couple, that if taken out of context and were the only things I was dealing with would cause a great deal of sadness, anxiety and stress for the healthiest among us. And...there are no answers.

Overwhelmed.

I simply have too many things for one person at one time and I don't know what to do or where to go. I have one friend who thinks I need to see a counselor, but I don't think it will help and she's forgetting one important thing: I am sick. I would probably cancel my appointment 50% of the time, which does not lend itself to building a therapeutic relationship. Plus, I don't know what I'd talk about. It's not like these are things I can "fix." They are just deeply painful and I have to find a way to let them go, but they feel too huge right now to be able to do that.

I'm isolating. I'm keeping my phone off. I'm not reaching out. I am staying home and crying pretty much all day long. I know this isn't good, but I don't know what else to do. I am certainly not going to start medicating myself and I can't drink alcohol so I have no choice but to feel the pain and somehow, someway walk through it. It just feels like more than one person can handle and I am almost at my breaking point. I feel so very alone, and for those of you who've felt this way, you know how painful it is.
I don't know what else to write.

I CAN'T SLEEP!!

I've been having sleep problems on and off for some time now. Believe me, I've tried everything. I'm one of those weird people who has paradoxical reactions to many medications, and sleeping remedies are one. Melatonin? Makes me hyper! Glass of warm milk? Gives me a stomachache! I'm a nurse practitioner and it's usually me giving out advice on improving sleep cycles. Well, I've taken my own advice and....nothing is working.

And when I am struggling to sleep, my mind starts to think and I make "lists" of stuff. Sometimes I wake up and write them down, as I did last night. Sometimes it just feels like I have so much weight on my shoulders and it helps to write it all down. I won't write it here - it's quite a depressing list, but it did help me clarify my issues for the moment and it's no wonder I feel the burden. There's a lot on my plate.

A friend of mine lost her only son nearly a year ago in a boating accident. The 1-year anniversary is coming up soon. I read Elizabeth Edwards' book recently and she not only lost her 16 year-old son in a car accident, but is dying of incurable breast cancer....and if that's not enough, her husband is a cheater and has an illegitimate child with a mistress. I'm sure you've all read the headlines. My friend and I spoke of Ms. Edwards' book and in the context of our lives how things can always be worse. You don't have to look far to find someone with a story more horrific than yours or entire cultures of people (such as those in Haiti, and now Pakistan) whose lives are destroyed.

So, I tell myself not to whine. I tell myself to be happy things aren't worse. And I pray for those whose lives live out in daily torture - even here in our own country.

So today I'm keeping it in perspective. And hoping I CAN SLEEP tonight.

Inspired, a poem is formed

Spherical Thoughts
8/15/2010

i.
One cell divides, 2, 4, 8.....
Then differentiates into a bird, a bear,
a human being.
The spheres uniquely creating a one-of-a-kind form of
life.

ii.
The soul is the great mystery;
the unknown which science cannot explain or diagram.
What is its shape or form?
Beauty lies in the mystery; the sacred, holy unknown and unseen.

iii.
Our spherical cells contain our unique genetic code
and while DNA is a helix on which spherical codes make up our unique sequence,
it is known there are no two alike.

iv.
My cells are uniquely aberrant, as each contain a parasite
feeding on my code, passed on by a stranger with whom I share a blood-bond.
His spherical invader attached itself to each cell of my body, our life sentences intertwined.
Every attempt to rid myself of this unwelcome invader has failed.
The stranger and I bound by a sphere that connects us to eternity.

v.
I am my mother, my father and all ancestors before me.
My children are me, my spouse and all our collective ancestors before us.
Yet I carry this sphere that clings only to my cells
making me different from my own.
A stranger's blood courses through my veins.

vi.
Spheres represent the eternal circle of life, love; of planets and suns and the fabric of humanity and the cosmos.
The sunrise and sunset; the moon and stars; the tide....all results of spherical bodies rotating in circular patterns, a 24-hour cycle of day and night.
I ponder this form and consider its impact on this one insignificant life, at this point in time......
And see hope, beauty and a familiar pattern of comfort that connects life and eternity in one revolving galaxy, where order is maintained, the future is predictable and I may once again be whole and bask in the gray mystery of the soul.

I step back and smile, thinking how superb are those things known and unknown, as I move the ring on my finger and consider the perfect form.

This 'n that

I've been feeling a bit better. A very brave friend of mine just quit her job of 17 years and is beginning her first management position, which is a HUGE step. She is a cancer survivor and she simply feels ready for a challenge, in a new business where people don't know her as "so-and-so, the cancer survivor." I am so proud and in awe of her courage, and I am inspired.

Jumping around today, I also have a friend who is in close touch with her "inner-child." She's very aware of the child inside of her that she nurtures and celebrates. I support her and think this is totally cool, but just can't connect with it. I can't even figure out if I have an inner child. But I do know this.....I have a inner teenager! No doubt about it - I am very much in touch with my inner teen. Early this week, I went shopping with my 19 (almost 20) year-old daughter for college supplies. We had the stereo cranked up high to old Elton John, very obscure stuff that wasn't famous (which she happens to love as much as I) and were singing at the top of our lungs. She was trying on really cute, young adult style dresses and I tried a few on too...and we laughed at how she looked adorable and I looked, well.....dowdy. I also like to be rebellious and tend to be a bit of a trouble-maker (benign trouble, not anything serious). I pull pranks and do goofy things - I did my share this week, and I have decided that I am indeed in touch with my inner teenager. Watch out! And just one more thing related to young women and girls these days (sorry guys) - I just don't get this whole bra thing nowadays. In my day, any attempt to make the breasts look larger than natural was considered, well, tacky. We were the generation of "bra-less" and going commando. These days bras are super padded, with lifts and wires and all sorts of uncomfortable inserts that make the breasts look twice as big as they really are! What is up with that?! It's a phenomenon I just don't understand at all! What happened to comfort? Cleavage seems to be the all-important goal. I hide mine thankyouverymuch. No reason to flaunt it. Kids these days! (yup, I sound like my mother).

But seriously, I did a lot of reading about Hep C this week, especially the use of OTC pain medications. They used to think that a person with HCV should limit Tylenol to no more than 1 gram per day. Now they feel that up to 3 grams is fine AS LONG AS NO ALCOHOL IS CONSUMED. That's no problem for me, I have not had an alcoholic beverage in years. Actually, Ibuprofen and Aspirin are NOT good options because of the way they are metabolized in the liver, and I've been taking them on and off. Both medications have anti-clotting properties, which is a problem for those with HCV. My platelet count runs very low (these are the cells in your blood that assist with clotting) and my Prothrombin time is prolonged (this is the amount of time it takes for Prothrombin to form a clot)...so I am hoping to make a few changes and maybe I will feel better. I do tend to bleed and bruise very easily.

I am hoping....actually needing....a couple of good weeks ahead. I want to help my son move back into his apartment, get my daughter off to her sophomore year of college and enjoy the Labor Day weekend. All I can do is try my best, as always, and hope it all works out. One day at a time, Sue...one day at a time.

Keeping hope alive

Following up on my previous post, I am a casual member of an online forum for people with Hep C. The forum is moderated by a well-known hepatologist. One of the other moderators had a post about the new medications coming out soon and said they show great promise for people with genotypes 1 & 2, but have not shown statistical significance in those with genotype 3. I have genotype 3a. If these studies are true (and I have no reason to believe they are not), I would not be a candidate for the new treatment. Bummer.

But I'm not giving up; I still think I need to see the hepatologist and make sure I am being managed correctly and see what's on the horizon regarding treatment options for me. I can't give up on just a sliver of hope, I just can't. I know it's not much but I simply must believe there is something that might improve my quality of life.

The last 24 hours were awful with lots of pain and flu-like symptoms and a bunch of other symptoms I won't bore you with. I simply can't go on feeling that poorly. A friend was coming to visit, but I had to let her know I wasn't up to visitors. My wonderful husband worked from home today to allow me to sleep and keep a watchful eye. I perked up this afternoon and got a few things done. It's been very hot (high 90's) and humid here and I don't do so well with that, so I stayed indoors.

Please, please do not take your health for granted. If you are blessed with good health, thank God that you can make plans and go about your day without the worry of illness. And for me, I simply must hold on to hope. Even if it's just a sliver.

Options and decisions

When people inquire about my disease they often ask what options are available to me. The truth is, at this point: Just wait until my liver fails completely and await a transplant. Having been a nurse I've seen my share of people who die from cirrhosis and/or it's complications. There's no way to sugar coat it - it's awful, horrible suffering and one of the worst ways to die. If you want to know details you can google it.

But I'm not to the point of needing a transplant just yet. There is quite a bit of excitement in the Hep C community about a new drug that has been fast-tracked by the FDA. Some are saying it will be approved next year, but my "inside sources" are telling me it may be as early as October 2010. The new medication is a protease inhibitor, when added to standardized treatment has shown promising results. The new med has even shortened the length of standard treatment.

I hope to see a specialist at a large medical center soon and have a full consultation to review my options. After having gone through 2 rounds of treatment I must admit trying yet another with the addition of the protease inhibitor does not excite me as the treatment is very difficult without it. But if I am a candidate for the new treatment, and especially if the treatment length is shortened I may just give it a shot. I know I can do it; I've done it before and even though I barely remember the last 3 months of treatment due to near-death sickness, it would be worth it if the statistics bear out. My family all want me to try, and their support is important.

However, I may not be a candidate for the new treatment. My liver is severely damaged and I have cirrhosis. This damage is irreversible, which means that even if I can clear the Hep C, I will always have a diseased liver. I simply don't know what options are best for me.

And I'm going to throw this out there as well; I have very mixed feelings about a transplant. I worked in an ICU that performed kidney transplants (much easier than liver) and I know that it's not always a walk in the park. I know that I could end up feeling worse, not better. An acquaintance of mine had 2 liver transplants for Hep C, and eventually died. He looked like the walking dead and I don't want that. Once again, I need statistics to help me make my decision. I think about how blessed I have been to raise my children to adulthood and live a really great life; maybe a transplant is not for me. I'd rather give that liver to someone younger than I who has the possibility of long life ahead of them.

I just hope I will have a better idea of the options open to me sometime in the next couple of months so stay tuned!