Guide to Hepatitis and Cirrhosis includes Hepatocellular Cancer
Heptacellular Carcina or HCC is not a common form of cancer. But it sure can show up if you lived with Hepatitis C as long as I did. Dang it! The end stage cirrhosis did a number on my liver and my recent ultrasound led to a CT scan to take a closer look at the mass they found. Yep. My alpha fetoprotein (AFB blood lab that can support a cancer diagnosis) was high and the tumor board at Nazhi Zudhi sent me to an oncologist today. Your Best Friends Guide to Hepatitis and Cirrhosis now includes Hepatocellular Cancer.
This little blog is my re-entry back to the website after a break. I have had several months of nonstop going. The computer crashed. My school year ended with a huge flurry of activity that was beyond ordinary. I started the summer looking for peace and rest. In typical Karen fashion I did not rest. I painted the kitchen cabinets. I taught my granddaughters to use a sewing machine. New curtains, deep cleaning, and reorganizing and the house kept me busy. The storage building was even tidied up when my daughter moved to be closer to me.
Since the diagnosis on July 14, my MELD score has moved from 6 to 22. I am in the process of being listed for a transplant at Nazhi Zuhdi. First they want to try and use a TACE procedure also known as Transcatheter Arterial Chemoembolization. To sum this little part up: I am taking sick leave from teaching and will be going with my doctor’s orders this fall.
Now that you know the facts, let’s get down to the nitty gritty. You know that’s where I live. Researching and readying myself for this has consumed me. There have been several different parts to it. They seem to layer upon one another, but the focus is the same. How can I survive liver cancer and a potential transplant?
I have rolled up my sleeves and put together a framework of what I think it will take. For those of you who have treated for Hepatitis C, you know exactly what I mean. For those who have survived cancer or a transplant, yeah… I know for sure that you get it. I have heard from several of you privately and in the forums. I sure do appreciate all of your love and prayer.
My reading has been across several different formats from medical journals to cancer recovery books, podcasts, audio, and videos. I am ALL over this one. You will be hearing about it all dear friends in the battle. It reminds me a lot of when I was first diagnosed with Hepatitis C in 2010. More conflicting information on the internet. Lots of scary pictures and statistics. I know that somewhere in there is my truth and I aim to find it! I start right where I have had success before.
I am taking the Spirit – Mind – Body approach –
Right now my body is pretty worn out. I still push on the exercise and yoga. I ache. I’m tired and sleepy. Nothing new there! lol My diet has gone through a major overhaul as I try to gain some weight and get in optimal health for the battle. Thank goodness for my liver loving diet. My doctor’s all commended me on my blood labs.
My mind is like a twister, racing and scooping up thoughts. Some of those thoughts create a gut wrenching fear. I linger on the positive faith filled ones. Forcing myself to be still and listen for peace is like trying to stop a tornado. But I’ve always heard that at the center of the storm, all is quiet. There. Right there in that quiet place I can hear wisdom.
Our inner spirit is where we are full of strength. It always is. It is untouched by the outside world. Pure and eternal, it is the essence of who we really are. I guard my spirit against the shouting voices of anger, fear, and anxiety.
I still know that we must analyze, understand, and organize our body’s process with liver disease. It is also important to just be. Sitting still with no outside noise is refreshing and helps me to center in on the quiet place.
Now that I have a computer again – Woohoo! – I will be breaking down all aspects of HCC or hepatocellular cancer, MELD scores, UNOS, and how it relates to Hepatitis C and cirrhosis. I hoped it would not happen, but your Best Friends Guide to Hepatitis and Cirrhosis includes Heptacellular Cancer now.
If you logged on to read about Hepatitis C and treatment options, side effects, or questions related to cirrhosis – please read all that you can. By getting treatment and taking good care of my decompensated liver, I have lived 2 years past a death sentence. I believe that every thought leading to positive action can add years to YOUR life too. Let’s keep fighting the fight against Hepatitis C and the liver disease that can come. Treat as soon as you can, eat right, and live every moment to the fullest.
All my love and thanks for prayers, encouragement, and support. Your Best Friend in the battle, xoxoxo Karen:)
27 thoughts on “Guide to Hepatitis and Cirrhosis includes Hepatocellular Cancer”
Karen,
I was hoping to hear from you – I had posted on another thread and knew you must not be here.
I’m so sorry to hear of your diagnosis and I do hope that a transplant will work for you. You have been an inspiration to me through my recent treatment. I will keep up with my juicing and continue to live healthy and hope you’ll keep checking in. love David
Dave,
There you ARE! I’m so happy to see your words of encouragement. You’ve done well with your treatment and I am so relieved that you may be reversing any liver damage! The sooner we can get tested and treated, the less likelihood of cancer.
I’ve been juicing too. I was going to go back and revisit that blog now that I have a computer again. I’ve got to get an easier way to juice this old one is a lot of work!
Best to you dear friend,
Karen:)
Hi Karen, I have been reading your journey, and wish you total recovery, u mentioned you found an easy method of juicing, I didn’t know there was such a thing, do u have a link to this easy method ?
Also I recently found I was f4 a3, just started Harvoni .
Wish you health ,
God bless
Hi Steve,
I’ve done a few youtube on juicing and you can find it all on my youtube channel. Also, I make protein shakes with plant based proteins which can help a lot also. I’ve used cheap juicers for years. Recently I got a better one on craigslist. Make a couple of days worth and stick the extra in a jar in the fridge.
Congratulations on starting treatment! You can be finished with it soon and let your liver start healing. End stage does not mean the end, you know. Not everyone will get cancer and by getting rid of the virus, you are reducing further damage!
I wish you peace and health also sweet friend,
xo KarenL:)
https://www.youtube.com/channel/UCpzq-szy-V0-90WZ7X-lxAA
Hi Karen, I was wondering how you are doing? Any news on your journey?
I wanted to let you know we are thinking of you and saying prayers for
Healing and health…
God Bless,
Hi Stephen, I am Dee, an old friend of Karen’s. It is so nice of you to check on her. She had the procedure a week ago. She is doing well.
I am sure she will check in with all of her best friends here as soon as she is able. She is still waiting for her transplant so I wonder every morning if she is home or in the hospital. I hope to hear from her today and will definitely keep everyone updates.
How are you doing? How are you feeling? I hope all is well with you. My part of the world is looking a little gloomy today. Rainy and dark at 10 AM. I try to tell myself it will make the flowers more beautiful however it looks like rain until Saturday, ugh. I am always so happy this time of year. I love Spring!
Well, I have some errands to run. Back soon. Dee
Hi Dee,
How is Karen doing? I been wondering about her, hope she’s well,
Tell her hello!
Steven
I have faith that you will search for what you need, and find your way. When I was diagnosed with Hep C in 1995, I started reading everything on it..although there wasn’t much..but a group of us got together and started sharing information, and look I am still here. (many are not). Education and knowledge is power..and you my dear will not stop until you have this conquered! Remember I have had 2 liver transplants..it is not a piece of cake, but you can do it. 1 week after my surgery, I felt better than I had in years. But please take things slowly after your transplant. If you have any questions, please just call me. I am here for you. Today I read where someone in Ireland cured their HCC with Canabis oil.
Emma my dear one,
Your words are so wonderful tonight. I’ve been on the phone w doctors about the transplant again today. It’s a frightening thought, yet my only option. I would LOVE to hear more of your story. We have got to spend some time chatting. 2 times eh? That’s the girl I want to follow! You are amazing!
I’ll message you on fb. ok? Thanks so much for the post!!!!
Love love,
Karen:)
Hi Karen,
I’d just like to thank you for your model optimism and determination, and wish you the success you deserve with this new challenge. You seemingly boundless energy dumbfounds me.
Sending you lots of love and a big hug for what is to come for you.
Brigitte
Brigitte,
Thank you dear for your great choice of words: optimism and determination can bring success for all of life’s challenges, yes? The physical energy is lagging a bit, but the spirit is ready to go!
I got your love and hugs. I’m holding on to it during the storm. I’m also sending some back to YOU.
Much love,
Karen:)
I just found your blog last week. I have read most of it. I am saddened to hear your news. I have stage 4 cirrhosis myself and it has been a daily battle to manage this disease. Your blog gave me encouragement last week on a day I needed it the most. thank you for that. I am praying for you.
Thank you so much. I am happy that you found encouragement. It is a lot of work living with cirrhosis. Our liver is amazing! Even this last report is not a death sentence. There are so many options available.
You are probably like me and have had a lot of emotions with cirrhosis. It is really hard when the symptoms like bruising or jaundice are right there for us to see. I hope you are resting and eating well.
Your prayer and kind words of support bring tears. We really are all in this together. Thanks for your friendship.
Much love and prayers for you also,
xo Karen:)
Best of luck to you you are such a brave person there is also gr8 support at 1800 goliver alf support groups I went to a meeting there last night this gentleman has had 9 yrs post transplant doing great and a woman was waiting for her phone to ring for the transplant she is going to have today. Alf or 1800 goliver has a lot of client meetings posttransplant that are doing very well there are support groups all over U.S. The gentleman 9 yrs post transplant said surg and healing was not as bad as he thought it would be; he said the liver that was transplanted was like turning on a light switch.
Julie,
Thanks a million for your post! I wish I could have been at that meeting with you! I am ready for the light switch! lol. I thank you for the link and will def call up and see what is available in my area. So much to do to get ready for all this!
How very sweet of you to take the time to send me this. Thank you again…
xoxo Karen:)
Hi dear lady… First let me say you are an inspiration.! Thank you so much. I am so sorry for the new battle to your body you must fight. As if Hep C & Cirrhosis is not enough!
I suffer with cirrhosis from Septic (bile) poisoning I almost died from. Can I ask what 2 or 3 websites do you use the most for your research? I don’t know what stage I am in because I have had the worst internal med doc for 2yrs. With a whole lot of hope I am going to have a new doctor soon. Its been a true struggle dealing with my symptoms.
I want to encourage you to continue to rest and fight the cancer and diseases. You can do this!!
Hi Judy!
Thanks so much for stopping by. Yeah.. we got this! Our body is amazing in it’s ability to keep going when we support it!
I wish my research were more concise and easy to narrow down. I hit a TON of peer reviewed medical sites through Ebsco host. I also like to read WebMD and Livstrong. The problem with the “general” health sites like that is the info may not be specific enough. I like to look through the research and see what kind of study was conducted to back up the findings, ya know?
I spend a lot of time on government and big hospital sites also. They are very cautious about putting bad info out there.
I am sending big ole encouragement back to you! I am soooo very sorry to hear about the symptoms. They pull us down physically and mentally too. I’m glad to have helped in any way and know that with determination we can live our best lives. YES!
Much love,
Karen:)
Hi Karen,
Not a lot of people can achieve what you have achieved. Oftentimes it is very hard to find peace in the middle of a storm. But you have found that deep inside despite of the fact the turmoil of the world going round and round like a tornado.
In the battle of Hepatitis C and Cancer, my prayers are with you. My thoughts are with you. And God is with you in all of these. He carries You through. Someday, you will stop fighting the battle and you will have a “new body” in the name of Jesus Christ.
In love & prayer,
Angela
Angela McCall recently posted…The Naked Truth of Paid Social Media Jobs
Angela,
You have certainly been a great friend to me in so many ways. We met because I was needing help on the blog and loved reading your posts. You have been so much more than I ever thought! Your heart is so pure and I am thankful that we met. BTW – a friend recently saw Matthew Ward in concert and I thought of you. It has been amazing to watch you develop your own skills as an artist and web designer.
I am confident that the HCC will be obliterated with the chemo TACE procedure. I am also preparing for a new liver if that is what it takes! It’s definitely not easy, but all of us facing this take it one day at a time. I know you would do the same if faced with these circumstances – with grace and dignity.
Much love to you,
xo Karen:)
Hello there, I am new to this website.
I myself do not have any of the above; however, my father, who is my best friend in the entire world was recently diagnosed with cirrhosis & HCC. He was originally diagnosed with hep C many years ago (before I could even understand what the virus was) and unfortunately never followed up…. Almost thirty years later my father , who was suffering terrible abdominal pain finally went to the emergency room with what we thought was another hernia… When news came back of “markedly abnormal appearance of the liver” on his CT scan, my heart dropped….. Less than one week later, after a liver bx and many many tears and hugs, my father has started Nexavar and we have an appointment with interventional radiologist to evaluate for embolization… My father was not accepted for liver transplant candidacy due to the fact that the malignancy spread into his portal vein…I am looking for advice.. any advice… The “prognosis” is grim. and I can’t just sit by.. Just by reading some stories on this website I feel better. And for that I thank any of you, in advance, for any insight possible. Thank you…..
I am so sorry to hear about your dad. It has only been in recent years that there are drugs to actually cure Hepatitis C. Your dad is like me in that the liver was already damaged. It is a silent disease and our liver works so hard in spite of the virus.
Your dad found out the same way I did – with a CT scan. The Nexavar is a good treatment and has proven to have positive results for many. I know exactly where you are in this process. I had never even heard of an interventional radiologist before. They can do amazing work in shrinking and controlling the spread of the tumors. I have even heard of people who have been on Nexavar for years. Be encouraged even though the prognosis is grim. Peace is strong medicine.
Please be sure and encourage your dad to eat a good liver loving diet. Maintaining weight is a good thing right now and will help him stay strong. He is blessed to have you sweet heart. I am with you in spirit as are the other Best Friend’s on the blog. If you need anything, just let me know.
Big hugs and love,
xo Karen:)
Karen,
Thank you very much for your kind words, it helps in so many ways. You seem like a very strong and caring person, very much like my father. I hope that he can continue to fight as you have. I look forward to following your story and triumphs!
We appreciate everything.
-Jesse
Thanks Jesse for your kind words. I am battling fatigue right now as I’m sure your dad is. Just remember that inside, he is still the same and must be loving you more than ever right now. He has to be a great dad to have a kiddo like you! All my love and prayers, Karen:)
Hello karen,
I’m very sorry to hear of your fatigue… My father unfortunately passed away on Oct 1. Other issues developed in addition to his HCC.. However, your words, as well as others did inspire him to continue fighting until the absolute last minute. I know that you are much prepared for your battle. I hope that you and I.. as well as the rest of your admirers can stay connected. Since my fathers diagnosis I have spoken to several other family members who are now actively pursuing treatment for hep C…. I’d like to think that through our short battle we can inform so many other people… Times are rough for me and my family, but when a situation approaches where I feel weak, I think of how my father would handle it. Yes, my father went through some moments where he wasn’t himself, things may have been said that he normally would’t, but believe me when I say it never once changed the way I felt about my father, and I know it never changed the way he felt about me. I’m positive that your close ones feel the exact same way! We are all in this together.
Karen, thank you again.. I will be visiting for updates!
Much love your way!
-Jesse
Jesse,
I send you heartfelt comfort during this time of loss dear one. How eloquent and gracious you are even in the midst of losing your beloved dad. From what I know of him through you, I am sure he is at peace now.
I lost my dad to a varices bleed. He had cirrhosis and I’ve often wondered if he had Hepatitis C. He drank, but his liver sure declined quick and early. I tell you this because my thoughts go him constantly. He is truly with me every day. He had moments when he was not himself the last few years also. It was Hepatic Encephalopahty, which I suspect your dad had also. But he was a wonderful dad and I never doubted for one minute that I was the apple of his eye. Your pain will be sharp on some days. There will be some lonliness too. But you will always be glad that he is at peace and rest.
I really appreciate your love and kind words. The battle goes on and I am grateful for every moment to see my family. Much love to you sweetheart and a huge hug. Also bravo for encouraging others to get tested, treated, and free of HCV. The one thing that improves my odds is that I no longer have the virus.
xo Keep in touch, Karen:)
Karen,
Just wanted to drop in and say hello. I hope that you are feeling well and have bundles of energy, and that your procedures have/are going well,. I know that it must be difficult on some days, but believe that good things/times will come. Family is the most important and can really help through rough times, keep them close (which was advice you gave to many, sometimes it’s good to hear your own advice :)… I admire your strength and determination, please stay strong and keep in touch.
Thank you so much for your thoughtful words. That is EXACTLY what I’ve been doing. Just today, I had lunch at school w my granddaughter. Those are the things that really count. Love and giving a legacy of strength and determination.
Hearing from you reminds me how strongly connected we are. Thousands of people read this blog, most of whom I will never meet. But we share this experience. Your message tonight was just perfect. (Well, I notice it was a few days ago. lol. You know what I mean!)
Thank you. We share love.
xoxo Karen:)
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