Tuesday, September 25, 2012

Liver Love

It's not whether you get knocked down, it's whether you get up 
~Vince Lombardi

Anyone awake at 3 in the morning? Give me a call. I wake up at the same time every night and have such a hard time falling back asleep. I think we should start a nighttime call center. It could play soothing music or read a book until you fall asleep. 

I did eight weeks of the trial drug. I saw my oncologist the day I quit. My liver tumor that was shrinking, got a tad bigger during this time period. I was aware and worried about the tumor getting bigger. I didn't want my options for treatment or surgery to be a problem. Quiting the trial was the easiest decision to make. The drugs didn't make me feel that good. But, what is funny is that I had things going on that stopped and started up again a week or two after I quit.  The chemotherapy had pushed me into early menopause. I am 34 and having HOT flashes all day long. I didn't even realize that the trial drugs had paused the midnight pajama change. Now I am back to turning red and removing layers of clothing. Part of the reason I stopped wearing  wigs. 

Liver Love :)

I got the phone call today  from Dr. Radiation's nurse and wasn't prepared for my treatment to happen so quick. I was still making sure the insurance company gave me pre-approval.  I start another radiation treatment in two days and this time it will take three weeks to a month from start to finish.  It's similar to the one I did on my vertebrae tumors. Image guided radiation. It's called something else. I am upstairs and the paperwork is downstairs. I will gather the information and get it out to everyone. It's very interesting.   I am going to wing it and give you the quick version of what I know they are doing. Mind you that I listen, soak it in, read about it and then forget. 
This Thursday they are going to give me some happy gas and a pill to make me calm and forgetful. They will numb an area and guide a needle with three gold balls into my liver tumor. 
Then in 3-5 days scanners will MRI my liver and will see if the balls stayed in place or floated around. I will then be fitted for a body mask, another set of tattoos ans some more scans.  For the record these will be my third body tattooing. I already have black and green ones all over my chest and belly. They are like beauty marks that remind me of all the fun I go through!  A few days after that I will be starting 5  Radiation treatments. Since it will be at a high dose, It will be every other day.  
There are side effects and it's really how my body responds. The tumor is pushing against my stomach  and the Radiation blasts will be hitting it. I may be sick for a day, week or month. I know taking the medication and watching my diet will help me get through it like a champ. I also gained 20 something pounds and would like to wear pants that don't have an elastic waistband! 
Has anyone done Radiation on the liver or Organ? Advice?? 

I want everyone to know that I am doing good. Some people think my humor is a coping mechanism. I am actually pretty funny! I just can't help but laugh my way through this junky time. I had the depression and anxiety hit. It wasn't fun for me or anyone around me. I still feel horribly guilty at the way I spoke to my husband, family and friends.  Michelle just wasn't Michelle.  I was an  angry girl! I look back on the amount of drugs in my system. It's gross thinking that Dr's just want you to take a pill for every symptom. I am down to 3 pills a day! I was on 6-10 at one point in my cancer career. 

Chat more soon. Biggest hugs to everyone.
Thank you for your support & love.


The Astonishing FartMan said...

What are you doing up at three in the morning? Well, it's one in the monring here, and I thought I'd check your blog before calling it a night.

Whaddaya know! I get rewarded with a new post. So happy to hear you're doing good. I know everyone will forgive you for being such a grump if you just ask them. I bet they already have.

Three gold balls in the liver? That sounds pretty exotic.

I hate your liver tumor. I want it gone. I'm sorry you've been depressed sometimes, but would be surprised if you weren't. Here's my stupid advice about that: be happy every chance you get. How's that for stupid advice? I've got more where that came from, and it's all free.

Hey, I had some accupunture yesterday afternoon for my chemotherapy induced peripheral neuropathy (CIPN). It was . . . interesting . . . and rather unpleasant . . . but you never know. The accupuncturist played this really bad and twangy Chinese music that sound like Chinese elevator music. And it was probably not the best timing for the accupuncture, because right before getting the accupuncture treatment, yesterday morning a neuro doctor did an EMG to test my nerve function, and that little EMG test also involved needles inserted into various parts of my body and about 200 electrical shocks. Or was it 300? What fun!

I survived it, but was very irritated by the whole experience and am very skeptical about whether either the EMG test or the accupunture will lead to any effective treatment of my CIPN. But at least I was a good lab rat, and maybe that will help somebody somewhere.

It's late. I'm rambling. I should go to bed.

Keep us posted when you get the chance!

BonniHess@aol.com said...

Dear Michelle,
You don't know me, but I have closely followed your challenging Sarcoma journey and very courageous battle for the past couple of years since reading some information that you shared on a Sarcoma site. My name is Bonni Hess and I am the mother of 30 year old Brittany who was heartbreakingly diagnosed with Alveolar Soft Part Sarcoma (ASPS)eleven years ago in July 2001 at age 19. Brittany has courageously fought her very challenging ASPS battle through 23 surgeries/ablations/radiosurgeries and three Clinical Trials throughout the United States and now in Canada. Brittany's primary tumor was in her left thigh and she has had mets throughout her body including her lungs, liver, brain, tibia, breast, spine, duodenum, pancreas, small bowel intususception, and abdomen. She has been participating in a Cediranib Clinical Trial in Edmonton, Alberta since April 2009 and has thankfully now had 41 months of disease stability with no new tumors and dramatic shrinkage and disappearance of her multiple and widely disseminated mets. When Britt was diagnosed with a liver met in 2004, it was thankfully successfully treated and destroyed with Radiofrequnecy Ablation(RFA)at the University of Washington Medical Center in Seattle. I am wondering if RFA is a possible treatment option for your liver met? Also,two new targeted systemic drugs, Cediranaib and Pazopanib, which are anti-angiogenic tyrosine kinase inhibitors (TKI's)seem to be showing promise in treating ASPS,and perhaps could be effective for other types of Sarcoma. Unfortunately neither drug appears to be a permanent cure and there is always a risk of developed resistance to the drug and rebound disease progression, but at least the drugs are showing some success in stabilizing progression of the disease until a permanent treatment and cure can Hopefully be found.
I wanted to share this information with you in case you may want to explore these treatment options and discuss them with your doctors. I have always felt that shared anecdotal treatment information is one of our most powerful weapons in fighting this extremely rare and challenging disease, and I and my husband helped establish the international CureASPS.org Web site where ASPS patients from all over the world can share researched and anecdotal treatment information as well as strengthening support and encouragement with other ASPS patients and their families.
I know that you have a different type of Sarcoma, and that each type of Sarcoma is different and responds differently to different types of treatments, but there are also some similarities so I closely follow the Sarcoma Alliance site.
You seem to be a wonderful young woman Michelle, and you have deeply touched my heart with your beautiful writing, your open and honest sharing of your feelings, your invincible courage and determination, your great passion for Life, and your incredible positive attitude and delightful sense of humor in the face of so much adversity, pain, and suffering and so many difficult challenges.
My most positive thoughts and very best wishes are with you for a very successful outcome to your new liver treatment, and I will be anxiously awaiting your next update. In the meantime, please take care and know that you are held very close in the heart and most caring thoughts of someone who has never met you, but who truly knows and understands all that you are going through.
Reaching out across the miles from Washington to share gentle hugs, deepest caring, healing wishes,warm friendship, and continued Hope, Bonni Hess

Anonymous said...

I love you fer blooka.