Tuesday, June 5, 2012

one very long year

It was a year ago that I started the decision making and jumping into a long sad summer of daily radiation treatments to the right side of my face. The usual began, dry mouth, trismus, and the symptom that has lingered in my system for months....exhaustion.From the treatment and also medication. Headaches started and more back pain. That's when the fun began. I am not talking about catching up on reality shows. I did enjoy flipping through mindless tv and then switching over to CNN when Paul came home! 

I did the IGR treatment on my back in December. Continued to be uncomfortble for months. Subsided and started back up in march-ish. 
Dealing with that and my lovely weight gain. Joy of  stretch pants! I started the nasty chemotherapy. The second one made me think of quiting. Paul had to take me to the hospital after every treatment. The third chemo, I pushed myself. I knew I needed to just keep trying.  Looking back with regret was not an option. I was already so weak and tired. The bed was my only friend. My medication list was getting bigger. Steroids galore! 
After the second treatment, my adorable husband got me a buzzer and we did the head shave. I couldn't look at my hair fall out anymore. It was making me sad. I have video...I will post it. 

And then it happened again....my pains got worse. I slept way too much and felt like the chemo was destroying me. My scan showed stabilization. But, not in the liver. My back tumors exploded (not literally) with pain again. More lydocaine patches. The best is I can never sleep. I wake up with these sticky patches stuck in the strangest places. Once one crept up to my ear, stuck to my shirt! I had no ides what it was. Felt like a slimy slug, Gross! 

That funny Gut feeling floated around me until I asked for more testing. My body didn't feel right. I don't think I blogged about this. It's somewhat new. Tumors have been camped out in my lungs and liver. Add a few blood clots. I had a lovely scare from being on blood thinners that gave me the brain hemorrhage. Back in the hospital! They put in a filter to collect the clots. That was super uncomfortable. No sedation. A metal piece being pushed down into your body. I cringe at the trauma and tears! The tumor in my lung has a little blood clot buddy too. 

A few weeks later I had a liver biopsy done to determine if the large tumor in my liver was cancer or just something trying to scare me.  I begged for a local and to be knocked out. I can't handle these little surgeries. I need an IV pole and some medication love. Not a painful procedure, I am a big baby sometimes. Oh wait, maybe I am like everyone else and can't stand being poked all the time. My body, my rules. 11 years of this crap, I get a say! 
It came back as the same spindle cell sarcoma. I decided (and everyone else. I feel like I don't get a say anymore) to do a Hepatic Embolization. 

Embolization for Liver Cancer

The hepatic artery delivers oxygen-rich blood from the heart to the liver. Tumors need the oxygen and nutrients supplied by blood to grow. Embolization stops blood from flowing to the tumor by injecting substances that plug the hepatic artery. Meanwhile, the healthy liver cells continue to get oxygen and nutrients from the portal vein, which brings blood to the liver from the intestines. In most cases, the procedure only stops the blood flow temporarily, but it can sometimes block the hepatic artery permanently.
Like ablation, embolization is a good option for certain tumors that cannot be removed by surgery, especially if the cancer has not spread to other parts of the body.
  • Hepatic artery embolization - The doctor threads a catheter (thin, flexible tube) into an artery in the inner thigh and up into the hepatic artery. When the catheter reaches the liver, the doctor injects small particles to plug the artery.

I am now spending another month back and forth to Docs. Trying to determine a plan. No more shots! NO more medicine! No more stupid clinical trials that don't help me.
I want this tumor out of my liver. I will take weeks of healing and pain. I have already endured so much. Fartman....what did you do to your liver. HELP ME figure this out. I need opinions. 

As the Chemotherapy was coming to an end (my choice), Paul (did everything) and I moved back into our  beautiful home we renovated. A whole year! I can't stand the look of boxes. I don't even have energy to open them! 

I hope everyone is doing well.....good...fantastic. If you have had and still deal with the crummy hard days. Just push along. One hour may be bright. I think that's all I need for now. Just an hour or two of no exhaustion. That's when my depression, anxiety and sadness disappear. Then the tears start to flow all over again. I am really feeling better as I detox this chemo out. I am also  trying to let more people into my life. I push and ignore. I get self conscious and scared. I learned that we all have something going on. I am over talking about it! 

love lots bloggers. 
I couldn't of gone through any of this without Paul, my love. Take care of that TOE!


Anonymous said...

thanks for the update! sending good vibes your way. you are in our hearts & prayers....

Anonymous said...

I'm so glad you blogged again! I know everyone who reads it will be glad to know you are still "you" and pushing ahead. You are an inspiration Michelle, to more people than you probably know. xxoo, becs

The Astonishing FartMan said...

I am so happy happy happy you have given us a new post! Right this minute I'm at M.D. Anderson Hospital about to get myself scanned. Hopefully I'll get a clean scan! I'm writing this on my iPhone which is not very handy, so tomorrow afternoon when I'm finished with the doctors, I will write you a better reply. Right now I'm just happy happy happy to hear from you.

The Astonishing FartMan said...

My darling child (I can call you that because you are younger than my own daughter), how much you have suffered!

I know some about suffering because I've had three big surgeries and chemo, which extended my life but have left me with some permanent side-effects. I know from experience how hard it is to keep your spirit from slipping into a black hole when you are physically worn down and in pain. Yet nothing I've gone through comes anywhere close to all you have endured.

A few weeks after my first liver surgery when the chemo was making me feel weak and putrid, when the peripheral neuropathy from the oxalyplatin was first starting to make my hands and feet burn on fire, and when the fluid collecting around my liver and the adhesions on my bowels felt like a knife in my side, I thought about Jesus on the Cross with nails in His hands and feet and a wound in His side, and I wondered, "Did He suffer this much? Did he suffer this long?" It was probably a bad sin for me to compare my own suffering to what Jesus endured on the Cross. But that is honestly exactly what I thought about. I also remembered that in His suffering, Jesus cried out, "God, why have you abandoned me?" And just the same way, I thought, "Am I left all alone in my suffering? Has God forsaken me? Am I being punished for my sins." But then I remembered that the Bible says that when Jesus died for us, He took all our sins upon himself. He felt everything that we feel. I think that is why He wondered if God had abandoned Him, because He was experiencing the worst of every human suffering, including the worst thing, which is to feel like you are suffering and all alone. And when you are physically weak and in pain, it is very easy, too easy, to slip into that lonely black hole where you can feel like misery is your only companion.

The Bible says that Jesus took away our sins and that He cleanses us of every new sin, yet you know all too well that He did certainly not take away our suffering. So it seems like we are left here, for now, sinless and suffering. Although we are sinless and suffering, we are not alone. God has given us love as a consolation for our suffering: His Love and the love of those who love us. I am not a very good Christian, but I do believe that.

(continued in next comment)

The Astonishing FartMan said...

(Continued from previous post. Sorry for being so long-winded!)

You asked my opinion about what you should do. I can tell you that the two liver surgeries have helped me, and I probably wouldn't be alive today without them. I try to understand and take my doctors' advice, but I think there might be treatments they offer when I will say, "No thank you, let's not do that." But really, I should be asking for your advice, about medical things and spiritual things, because even though you are so much younger, you have greater experience with all this stuff.

Still what I would say is, remember the example of Jesus in His suffering. He felt alone, but He was not alone. God healed Him, and restored him, and raised Him up, and He will raise us up, and restore us, and heal us, too.

In the meantime while we are still here in this life, although we are cleansed of sin, all of us still will suffer. How is that for noticing the obvious!?!? Some suffer more than others as you know too well. Some people say the reason some suffer more than others is that they have more strength to bear the suffering. (Right now, I bet you are thinking, "In that case, I would like to have a little less strength, thank you very much!")

But we don't suffer alone because God has given us love.

So here's the best advice I can come up with, which you probably already know is true:

You should trust in the love that God has given you, which means you should trust your husband to help you figure things out. You probably have tried to spare him by not burdening him with everything that you are feeling emotionally and physically. But you should not worry about that now.

Talk with Paul about all your hopes and fears, every single one. Do not hold back anything that you feel like you need to say. Tell him what you think you want and tell him what you are confused about. Explain to him as best you can about how you feel, but don't worry if there are things that you can't find the right words to explain. Trust him to understand the things you can't explain. If you can't figure out what to do, let Paul figure things out for you. That's one of the things that husbands and wives are for--to do the things that need to be done when we cannot do them for ourselves. So if you aren't able to decide what to do, let Paul decide what is best. Needless to say, things might be confusing and difficult for him, and he won't ever feel sure about things, but tell him you trust him because you know he loves you. Yes, that is a difficult burden for love to bear, but it's a burden that love can bear. And remember that you are not alone in your suffering.

Sjn said...

so glad you posted, I've been looking for you. Prayers for your healing...

Kristen from OK said...

Sending love and prayers for healing and peace!

Frank Marcovitz said...

Michele, I am so glad to see your post. We miss you and love you deeply. We think of you often. You are so strong and inspirational to all of us. We wish you all the best. Next year, I expect you to be riding along side me at Cycle For Survival!!