A big dose of HOPE

I heard from the hepatologist/liver transplant specialist's office today - they changed my appointment but it's only a matter of a few days. I spoke with a person yesterday who is a gastroenterologist; this particular medical specialty often takes care of people with HCV from diagnosis to standardized treatment. For example, when I was on Interferon/Ribavirin (2 courses, 1 24-week and 1 48-week) a gastroenterologist managed my care. The need to see a hepatologist arises when treatment fails and there are no further options - which describes me at this point in time.

He (an acquaintance, not really a friend) told me he recently returned from a HCV conference and believes there may be other alternatives for me. New clinical trials are showing great promise, but I've been excluded in the past because I am not treatment naive. "Treatment naive" is a research term used in a double-blind clinical trial where neither the researcher or the patient knows if they are receiving standard treatment or the new medications under experiment. If you have been through treatment, you are not "naive" to treatment; you know the symptoms the medication produce and therefore would be able to detect if you were on standardized vs. experimental treatment. However, when a prolonged study begins to show 100% cure rates in those receiving the experimental drug(s), it become unethical to withhold that option from those who are not treatment naive in order to save their life. He indicated this is indeed the case with a new treatment option consisting of 4 medications - two are the meds I already took and two are new medications.

The hepatologist will be aware of all this news, and the hepatology department at Henry Ford Hospital is world-renowned for their expertise in liver disease. The doctor I'm seeing is most likely a participating researcher in the current study OR she knows all about it and how to get a patient into the experimental group. I am suddenly feeling a ray....no a huge BEAM of hope for myself. I cannot reverse the damage done to my liver, but I know that getting rid of the virus would help me feel much better. I've gathered all necessary items for my appointment: slides from previous liver biopsies, CD-ROM's of CT scans and reports they requested me to bring along. Now I am darn excited to see her! There is HOPE! And darn it all - I am going to fight with all I've got. I want to see my children marry. I want to know my grandchildren. I want to grow old with my wonderful husband. Hope hope hope. I'm hoping like crazy over here!

Grief and loss

If you've kept up on my posts you know that one, I haven't been writing much and two, I recently lost my dearest friend, who died in her sleep.

Grief is a strange and mysterious condition; there is no right or wrong way to grieve and each person reacts differently. This is certainly not the first time I've gone through the grieving process, but added to the other stressors in my life it is like the weight of the world. I'm not sure if I'm doing it well or not. I've cried - a lot, I've prayed - a lot, and I've been angry. Very angry. And who I am angry with is the family of my friend and the way they are reacting to and dealing with her shocking death and formal arrangements. They've included me quite a bit which has been an honor, and although it wears me out I know I must do this for my friend. What's making me angry is how little they knew her; how little they seemed to care and how laissez-faire they are handling things. It's as if they just want to get it done quickly and have this all behind them. All, with the exception of one sister who has been communicating with me on a daily basis and she feels the same as I. It's just so puzzling.

Last August I spent a week with my friend at her family cabin in Michigan. We were talking about our childhoods and I mentioned how few adult women I knew had what they would consider a wonderful childhood with a happy, loving family. My friend said, "I did. I cannot think of one negative thing in my childhood. My parents were wonderful to each other and to all of us; they were openly loving and supportive - I could not have asked for more." I was so happy to hear that as it seems as though most of my female friends could not say the same. And yet, her parents are both deceased and her family is terribly dysfunctional. So...having a solid foundation does not guarantee a happy, functional adulthood. I find this quite intriguing.

I recently read Elizabeth Edwards' book Resilience, and she's a woman who has been through a lot more than anyone I know. It seemed her good family foundation was the bedrock of her perseverance. I don't have any answers and I'm completely lost for an explanation of any of this stuff. I only know that I'm doing the best I can right now and the last 2 weeks have been extremely difficult.

One thing about my chronic illness that is salient in this discussion is this: I do not want to be treated like a baby and have people tiptoe around me as though I'm this fragile person about to break. People do that when you are ill and it is infuriating. While I'm sure they have good intentions...PLEASE do not do this to anyone you care about. Be transparent. Talk openly and honestly. Don't think you are protecting someone by keeping secrets. It all backfires and makes grieving much more difficult. Yes, I am sick but I can handle it.
And I miss my friend...terribly; I want her back. I was not ready for this and it's so hard to accept.
Sigh.

Lots going on

I finally have my appointment to see the liver transplant specialist to be evaluated. My appointment is December 17. I am eager to get credible information and learn about my options. This appointment is simply a consultation; after this appointment, I will have to be admitted into the hospital for a few days of testing, including a liver biopsy (ugh) - one of the most painful of medical procedures. But it isn't my first so at least I know what to expect.

My life has been uncontrollably busy this past week for many reasons. I'm intimately involved in planning the funeral for my friend who died last week. Her funeral will not be held until Nov. 6 due to a myriad of circumstances. Also, each year our community has a Thanksgiving feast for the needy and those who are alone so they will have a lovely traditional meal with fellowship. We also deliver meals to the homebound. I've been the volunteer coordinator for this event for 2 years as this is something I am able to do. It involves fielding calls for volunteers and putting them into slots for the various volunteer needs that day. Our entire family participates for the duration of the meals (there are 2 seatings and it is held at a very beautiful place with china and fine linens to make guests feel extra special). It truly is a community event - churches, businesses and individuals all come together to pitch in and get it done. Top chefs in our area cook a delicious meal and I'm honored to help in my small way. We also got a new puppy, which has been fabulous. She's the cutest dog ever and her picture is shown on the right. I'm a dog lover and this is great therapy for me, but it involves a lot more attention and makes my days busier - but....the good far outweighs the bad. She's a keeper. And...yup, she has a china blue eye - rare in Border Collies.

So I am really off-balance. I have to pace myself to get through each week and it's been nearly impossible to do so due to circumstances. I have to help ensure that my friend has a funeral that is in alignment with her wishes, which is uncanny - she shared them with me in a casual conversation in August. And the other things are simply beyond my control. I also have to do the work of grieving, which is nothing you can control. It comes in waves and at most unexpected times. I am having a difficult time sleeping, which is very common for those with Hep C. I can fall asleep easily, but I've been sleeping only 4-5 hours a night and I need 9. So, whatever your personal beliefs I would ask for prayers and positive energy sent my way. It's been a very rough year and I will be very happy when we flip the calendar to 2011.

Silence

"In the end, we will remember not the words of our enemies, but the silence of our friends." Dr. Martin Luther King, Jr.

While reading for preparation in writing my book, I came across the quote above. I hit the nail on the head. One of the most difficult things in living with illness for me has been the loss of many friends and even a few family members. None of my friends ever said, "Hey Sue, we are not friends anymore", no nothing that obvious. The friendships simply faded away....slowly, until there was nothing left. "I never know when to call you - you might be resting" is a common concern. Plus...and I'm going to say it: it ain't easy being my friend sometimes. We may make a date to have lunch, go hiking in the woods...it doesn't matter, I'm likely to cancel. I listen to my body very closely, pace myself and if the timing is off, I cancel.

I'm coming up on 5 years since my diagnosis. My nurse case manager called me yesterday to say that everything was approved for me to go forward with a liver transplant workup and consultation. That is some scary stuff, but it's the only option left for me and I will explore the pros and cons.

For now, I am grieving the loss of my best friend, working on writing my book and trying to put one foot in front of the other. The gales of wind that brought 25 ft. swells to Lake Michigan yesterday seemed an appropriate metaphor for the way I am feeling now. Think about those you love and might be hurting; are you silent?

Profound sadness...

For those of you who wish to read about Hep C, just move along and look at a different page because I am not going to talk about it today.

I am so profoundly sad and lost today. My very best friend of 30 years was found dead in her home yesterday; there was no indication of foul play or suicide. It appeared she died peacefully in her sleep. She was 51.

I can't stop crying.
I can't imagine life without her.
We always said we were like sisters, and not having a sister I considered her mine. She had 3 sisters and said I was better than a sister because there wasn't any baggage in our relationship.

I spent a week with her this summer at her family's cabin up north - now, so glad I did that. I'll never forget how we laughed and acted like teenage girls. She lived in Washington DC - quite a distance, but we saw each other 4-5 times a year. And...she planned to retire to our area to be near me, my family and other friends in the area. Her parents preceeded her in death. My children all love her to pieces. My now 23 year old son proposed to her when he was 4, he was so smitten with her. We still laugh about that and she has a picture of them together holding hands, with him looking up at her lovingly. She was a beloved member of our family.

I don't know what to do, I feel lost. A friend of mine writes beautiful poetry and she put this on her blog today, which I just have to share:

weeping and aching,
i longed to honor your passing.
i longed to honor your life.
searching everywhere,
i found only one answer.
to honor myself.
become all that I am.
and carry you inside that beauty.

That's about all I can do. I am so profoundly saddened and still wondering.....hoping.....that this is simply a bad dream.

Remembering a very special day

One year ago today, all four of my children and seven of their friends ran a Marathon to raise money for Hepatitis C research. All 11 completed the marathon and it was a beautiful fall day. They had been working on it all summer - behind my back - and wanted to surprise me, and boy did they ever! They mailed letters out to their friends, my friends, family and former co-workers. Overall they raised over $3,000 to fund research on HCV. I will never forget that special day; they asked that people write me a note along with their donation so that they could pass it on to me to provide encouragement. I kept all those notes and they meant a lot. It was very humbling.

For those of you who don't know much about HCV, I thought I'd do a little Hepatitis 101 here. There are three forms of hepatitis, which are all viral illnesses.
Hepatitis A is the most common form of hepatitis. It is caused by eating contaminated foods or drinking water contaminated by the virus. Most people pick up the disease when traveling out of the country - but there is a vaccination against it, which is often given when the traveler is going to a "high-risk" area. This is the type of hepatitis most old-timers call "the yellow jaundice" because it causes very acute illness and yellowing of the skin and eyes. Hep A causes acute, severe illness marked by vomiting, diarrhea, yellowing of skin & eyes and fever. It is a self-limiting form of hepatitis; once you are over it, it doesn't come back (much like having a cold). However, it does cause permanent damage that renders a person unable to donate blood in the future. It is transmitted by the fecal--oral route and is quite uncommon in the U.S., but was common prior to 1940's.

Hepatitis B is much different. It is a bloodborne pathogen, transmitted blood-to-blood, but mostly through sexual transmission. Hep B is less common because there is a vaccination for it that is required for pretty much everyone nowadays. The vaccination is a series of 3 injections and all children must have the series prior to beginning school. All health care workers are also required to get the vaccinations for Hep B. It is considered a sexually transmitted disease. You will rarely find anyone in the U.S. with Hepatitis B.

Hepatitis C (formerly known as Non-A Non-B Hepatitis) is a bloodborne disease transmitted blood-to-blood. It is not considered to be sexually transmitted, however researchers are unable to prove it can't be transmitted sexually. The most common modes of transmission are sharing of needles between IV drug abusers, tattoos and body piercings, receiving a blood transmission prior to 1993 and occupational hazard of needlestick by healthcare workers. I believe I contracted HCV sometime in the 1980's when nurses did not wear gloves and we did not know about bloodborne pathogens; HIV/AIDS was unheard of and we simply were not careful. Most nurses who practiced prior to 1987 were not aware of the dangers and hospital practices were not protective. HCV is more common than HIV now and only 50% of all infected people can be cured. Some people acquire HCV and their immune system rids them of the virus on first pass. Those who do contract the virus usually do not become symptomatic for decades - usually within 20-30 years. We do not routinely screen people for HCV in the U.S., even those in "high risk" groups. In my case, I did not know I had it until I became very ill in 2005 and blood tests confirmed HCV. Symptoms usually begin to show up once the liver is so damaged it is no longer functioning properly. And....my spouse and all 4 kids needed to be tested since we lived together and were not careful around each other's blood AND I had 3 children during the 1980's - putting them at risk for acquiring the disease through childbirth (which is rare). I am so thankful that all 5 tested negative for the disease. And, since my only risk factor was occupational I am certain I contracted it via accidental needlestick. I had sustained at least a dozen during the 1980's.

So today I am thinking about my amazing family with gratefulness that I did not pass this disease on to them and also thinking about the many people with HCV who do not yet know they have the disease. HCV silently attacks your liver until it says, "STOP" and if the damage is too great, you are most likely to have a rough future ahead of you. And for those of you who feel more "sorry" for me because I acquired this disease by taking are of the sick, I wish to say this: It does not matter how the disease is acquired; NOBODY deserves to suffer from this illness, regardless of their risk factors. My worth is not more than any other person's.

A long awaited Friday

It's Friday, October 15. I've been waiting - planning for this day for months. We have family visiting from California and planned to head up north to see the colors (at their peak in Michigan now) as well as to go to our son's football game. He's the Varsity coach and high school teacher in a town about 3 hours away. I so look forward to watching him coach and the way the boys look up to him; he always tells me "I'm living my dream, mom." What more could I ask for?

I woke up feeling okay but as the day progressed, the worse I felt. I am still not recovered from our vacation. It's a feeling I hope I can adequately convey in the book I'm writing; it's very difficult to put it into words. When we were on vacation I pushed myself every day. I couldn't just wake up, slowly work my way into the day and go from there. I didn't want to miss anything so I forced myself up and out the door. I really had to push hard and most days I didn't really turn the corner until well after noon. But I just couldn't squander the opportunity of seeing all that beauty. And doing so has had a price: I'm still exhausted 2 weeks later - trying hard to get myself back into a rhythm.

Today was one of those days. While my heart and head wanted to feel well enough to go, my body was not cooperating. I hoped if I just took it easy this morning I could hang in there and things would improve. Instead....they got worse and by 2PM I knew I would really be pushing it to go. I don't generally do anything at all after 7PM, so that was a stretch all by itself just thinking I could go to a football game starting at 7 and ending around 9:30. I finally had to make the call and decided it best to stay back. My biggest fear is overdoing it and either 1) feeling so sick tomorrow I could barely get out of bed and/or 2) taking another week to recoup the strength I lost by pushing so hard. My husband & I agreed that this was best for me. He left. I cried. I'm alone for the next 24 hours except for my dogs.

I'm coming up on 5 years since I became ill. My crying lasted all of 3 minutes. I'm accustomed to this; it's part of my life now. I miss things that are important to me. And it just sucks.