Bone Pain

Before I get into my topic, I want you to scroll down the blog to the Spoon Theory blog and read the comments by PSPam. Wow! Finally, someone who really understands how Hep C effects your life!

Ok, to my subject for today. Many people on chemotherapy struggle with maintaining blood counts, as chemo destroys all cells - good & bad. Often, pretty much every element of a complete blood count is low - a condition called "pancytopenia." I experienced pancytopenia during the last 3 months of treatment in 2008 and my biggest challenge was my neutrophil count. Neutrophils comprise the largest part of our white blood count which is responsible for our immune system. My neutrophil count was so bad that my doctor had to give me a drug (injection) called Neupogen, which is also needed by many cancer patients. Neupogen stimulates the bone marrow to make more blood cells as most blood cells are formed in the marrow, particularly in the large bones such as the leg bones and hip bones. Many who receive this drug experience a great deal of bone pain. I have a friend who was on chemo for breast cancer and she remembers Neupogen as having the worst side effects than any other chemo drug she took. But it doesn't affect everyone the same way and I had seven injections - a little bone pain, but I felt better. Having a dangerously low neutrophil count makes a person feel very very sick and I was thankful for feeling a bit better.

Another blood component made in bone marrow are platelets (also called thrombocytes). Platelets are one of the factors in blood clotting. A normal platelet count is 200,000 - 400,000. Mine has been running around 90,000 which is typical of a person with my stage of liver disease. Therefore, my body has been trying like crazy to make more platelets and I've experienced a great deal of bone pain lately - much more than when I took Neupogen. My pain is located exclusively in my legs and it's a very difficult pain to describe. It's a deep, achy tired feeling; almost as if your bones were badly bruised.

Honestly, this dying slowly and suffering is for the birds. I have very little hope that anything will change in the next 5 years; I've been dealing with this for 5 years already.
Be grateful, be very very grateful for your health - if you have it.

Holidays for people with Hep C (or any chronic illness)

I want to begin by saying I truly love Christmas. My favorite things are cooking, baking those once-a-year special cookies, having my family together and giving gifts. I think many people expect too much from the holidays; they crave that feeling we had as children to wake up on Christmas morning and find magic. Those days are over, but for me (and I suspect for you as well), the best part is giving gifts that delight a person you love. For me that's as satisfying - even more so - than trying to recover the Christmas magic we experienced in our childhood.

But Christmas is also tough and pressured. Single parents alone on Christmas day because their children are at the other parent's home; families ravaged by poverty, addictions, a loved one in prison and those who have no homes or families to go to. I think and pray for those for whom Christmas seems to bring a sense of sadness and grief; and...I try to do something nice for people I know who are struggling.

For a person with Hep C, there is an extra burden, especially for us who are parents. We dream of this idyllic Christmas in which everything goes perfectly and we (at least I) tend to forget I am ill as I plan for the holidays. After seeing the specialist on the 21st I was reeling, and I knew I had to step it up - a lot - to get the outcome I longed for. Those of you with grown children who are out on their own will understand of what I speak; kids move away, become adults and while they all love one another deeply, they may not get along as well as when they were growing up. They may not have much in common, and we parents tend to forget they may not be best friends. Don't get me wrong; my children have a deep love and connection and would do anything for each other. But it's not all chocolates and roses - they have disagreements, differing world views and have grown apart.

I think when we are ill, we put too much pressure on ourselves to make things special and fun. When our illness is terminal, time seems so precious and we want it to be a series of magic "Hallmark" moments. I am no longer able to go out sledding, go to the movies or enjoy a nice hike in the woods which makes it a challenge to find things to do as a family. This year I planned a scavenger hunt, we held a pool tournament and watched old family movies and a few new releases. I made that "wow" Christmas dinner, I put extra thought and love into gifts and woke up every morning determined to put on my best "I feel good" facade. And, I pulled it off.....at great cost to myself.

Did everything go well? NO! Our kids fought - one disagreement was especially bad and will never be forgotten I'm afraid. My relationship with one child has been permanently scarred by my illness (this child was living at home through both rounds of chemo), and displays a great deal of hostility toward me and the energy I expended wore me out. I am still not recovered, and I've cried a bit every day over what a failure the holidays were. Yes, there were a few wonderful, loving moments but overall it was horrible, and I am not exaggerating. It was probably the worst Christmas I've had since I've been a mother. I simply tried too hard to force something that wasn't natural and there's always the big elephant in the room: MOM IS DYING OF HEPATITIS C, which becomes more obvious as I've lost so much weight I hardly recognize myself and my fatigue is hard to hide when black encircles my eyes on a continual basis.

I've always been an over-achiever and have high expectations of myself, so it's hard not to feel that I've been a failure. I'm really struggling, but I know what I need to do and I'm doing my best. I happily said goodbye to 2010 (one of my most difficult years) and I'm hoping 2011 is an improvement. And, if there are any of you Heppers out there who have holiday suggestions, I'd be glad to hear them. I've put Christmas behind me and I'm moving forward.

My visit with the specialist

I traveled to Detroit Tuesday to see the hepatologist & transplant surgeon. There really wasn't any new news. I am in stage IV (worst stage) liver disease and in level A in regard to transplant (lowest level; it goes from A-C). This means a transplant is not imminently needed. I also learned that I will not continue to worsen (in terms of how I feel) at the pace I have over the past 5 years. That was probably the best news to report. The worst news was that I will never feel well again. She predicted a 10-year lifespan if I have a transplant. Without transplant it's probably more like 5 years. There are no new medications for me and none on the immediate horizon due to my having genotype 3a. All of my current symptoms are commensurate with the level of my disease, although there are 3 symptoms that could be from something else and she feels it's best not to assume everything is related to Hep C. So, in January I will have to go into the hospital for three tests to rule out something else that might cause these symptoms to manifest. She really didn't offer me much hope.

My family is ecstatic to learn I might live 10 more years! I have to admit that I would love to see my children marry (at least a couple) and possibly meet a grandchild or two, but I am not as overjoyed as they are because I know what my daily life is like. My quality of life is quite poor; if I were to rank it on the 0-10 scale (0 = no quality, 10= I feel perfect every day) I would give it a 4-5. That's not an easy future to face, and I alone have to face it. My wonderful spouse tries as hard as he can and my kids do too, but they don't have the illness I feel every minute I am awake.

There was another thing in this consultation that really bothered me. I am not sure I can convey it in a manner you would understand. Normally, when you see your doctor, s/he pushes down on your liver area - right below the right ribcage - and asks you to take a deep breath.
when the lungs inflate, they push the liver down so it can be palpated by the doctor or nurse. In a healthy person, very little is felt by the doctor as the liver is squishy and smooth. When I took my deep breath, I could feel my liver hit her fingers - HARD - like a cha-chunk, hitting a brick wall. She let up a bit and I could feel my liver slide under her hand. It was hard as a rock. It didn't hurt, but to say it was a very unpleasant sensation would be an understatement. It's kinda haunting and feels like my body is betraying me.

Oh well. It's almost Christmas and all of our kids will be home tomorrow for 4 days. They are all staying here and I've been working on several things to make their visit fun. I will do my best to suck up my illness and keep a good fake "full of cheer" going. I know it's okay to be myself, but ultimately I want my kids to remember me favorably and feel like I tried my best. Happy Holidays to all!

oops!

I just realized tomorrow, December 11, marks the 5th year anniversary of the day I came down with symptoms of Hepatitis C. I wasn't diagnosed for another month, but I remember the day vividly. Five years......wow.

Brief updates

Well, here we are in the midst of the holidays. It's a time that is supposed to be "happy and gay" but for many it's a time of sadness, loss and isolation. I'm one of those perpetual snow/Christmas/holiday lovers because I enjoy everything that the holidays represent....however, I realize it's not like that for everyone so it's important to take a moment to support the folks around us who are hurting; buy a gift for a needy child and practice random acts of kindness. We can all certainly improve and make this a season of hope for all.

Hope...ahhhh. The appointment I have scheduled with the hepatologist/transplant specialist has been changed to December 21. I get daily email updates on medicine/nursing practice and recently read abstracts from presentations at the AASLD (American Association for the Study of Liver Diseases) annual convention and updates about Hep C. There are many promising medications on the horizon for folks with genotype 1, which is a good thing because it's the most common type in the U.S and the remission rates are <50%. But.....I did not find anything promising for us with type 3a. I'm sure the physician I'm seeing attended the convention and will know a great deal more than I could glean from reading a few abstracts. I am eager to meet with her, but I am also understandably scared to death. Realistically, I know I won't get any hard answers from her as this is my initial visit. But any sort of treatment will undoubtedly mean more suffering and probably chemo. After 2 rounds, the thought of another is not something I take lightly but I'm going to give it a shot if the statistics are promising. Or, maybe the only hope for me is a transplant. I will go with an open mind and heart.

I sent my book off to the publisher I selected back in November, meeting their requirements for 3 full chapters and a long list of very specific requirements. I followed the advice of a professor emeritus at the University of Michigan, where I completed my graduate work and her words of wisdom were very helpful. I take not having heard back yet as a good sign. If they hated it, wouldn't they have sent it back to me a with a nice letter declining my work? I can only hope. I am writing this book for all people suffering the ravages of invisible chronic illness, which has it's own set of challenges that are extremely difficult and isolating. I'll keep you posted.

In the meantime, I hope you are all able to find a glimmer of hope; a sliver of promise; love, and a measure of peace this holiday season. At least...try your best. That's all any of us can do.

The Spoon Theory

Writing a book is so fun! I keep stumbling upon many websites that have much to offer. Today, I found a website of a young woman who has Lupus. She developed what is called "The Spoon Theory" which is a way of explaining what having a serious chronic illness feels like to the person who has it. Please check out the link and read her article. It is not only brilliant, but aptly describes how it feels to live with invisible chronic illnesses.

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

Couldn't pass this up!

I found a great website about invisible chronic illness while conducting research for my book. The organization is a Christian organization and it's mission is invisible chronic illness. Here's the link: http://invisibleillnessweek.com/
There are 30 questions about invisible illness on the site and I am going to answer them here for you:

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Chronic Hepatitis C
2. I was diagnosed with it in the year: 2006
3. But I had symptoms since: Dec. 2005
4. The biggest adjustment I’ve had to make is: Not working full time; missing out on many important events and not having the income to help my kids through college as we had planned.
5. Most people assume:I am doing well as I do not appear ill.
6. The hardest part about mornings are: Everything is hard. Just getting out of the bed can be challenging as I have a lot of muscle, joint and body aches.
7. My favorite medical TV show is: I don't watch TV
8. A gadget I couldn’t live without is: My Amazon Kindle
9. The hardest part about nights are: Sleeping the whole night through without pain or nausea.
10. Each day I take 3 pills & vitamins.
11. Regarding alternative treatments I: Tried them in January 2010 and they made my condition worse, which happens 1% of the time in people with HCV.
12. If I had to choose between an invisible illness or visible I would choose: Visible, that's easy. People are more likely to offer compassion.
13. Regarding working and career: I have very limited energy, so my jobs are generally "work from home."
14. People would be surprised to know: That I have many days that I feel so terribly alone and like nobody understands.
15. The hardest thing to accept about my new reality has been: I am never going to get better, I will become more sick and there is little hope.
16. Something I never thought I could do with my illness that I did was: Spending more time alone, which is something that I now need/crave. I also went skydiving twice!
17. The commercials about my illness: I've not seen any.
18. Something I really miss doing since I was diagnosed is: Taking long, strenuous hikes; social events, visiting my kids.
19. It was really hard to have to give up: Working.
20. A new hobby I have taken up since my diagnosis is: Painting and writing poetry.
21. If I could have one day of feeling normal again I would: Hike all day, somewhere I've never hiked before that is known to be beautiful.
22. My illness has taught me: To accept my life as it is; it's in God's hands. And, to pace myself by listening to my body.
23. Want to know a secret? One thing people say that gets under my skin is: "you look great!"
24. But I love it when people: call, send notes or card, or best yet - offer to help me do something I find difficult to do by myself.
25. My favorite motto, quote that gets me through tough times is: "Don't let them take away who you are." For me this has dual meaning; "them" are unsupportive people and my disease.

26. When someone is diagnosed I’d like to tell them: I'm here for you 24/7 and I truly understand.
27. Something that has surprised me about living with an illness is: I am still alive and remain as productive as possible.
28. The nicest thing someone did for me when I wasn’t feeling well was: Loan me her cleaning lady for a day, who cleaned my entire house and my friend paid her. Second, I had a friend drive me to visit my daughter at the University, which is 2-1/2 - 3 hours away.
29.. The fact that you read this list makes me feel: Like you care.