Saturday, November 15, 2008

more pain, more decisions, more waiting

I think the big tumor next to my spine is growing, and I'm scared. All week I've had what feels like a muscle ache in the right side of my back, spreading around to the front of my ribs, and it's getting worse. It's the tumor that kept growing during chemo; and, since I haven't had any chemo since early October, I wonder if that withdrawal is freeing it up to grow faster. I know the tumor is sitting up against a muscle, and I think it's irritating it more and more. It hurts to take a deep breath, to cough, to sneeze, to bend over and pick something up off the floor. At night, I can't roll onto my side — either side — without pain and shortness of breath, even with Vicodin. Even with two Vicodin. Ibuprofin helped get my hip under control, but it doesn't seem to be doing too much for this irritated muscle, except maybe take the edge off a little.

I'm supposed to be getting radiation on this tumor, and I would have started the set-up process Thursday, but that's been delayed while I explore another option besides the conventional radiation Dr. C. would be offering at the University of Minnesota, where I go for my cancer care. This other option is called Cyberknife, and it's supposedly a more focused, targeted form of radiation that would take less time and have fewer side effects. It's only offered at St. Joseph's Hospital in St. Paul. I have an appointment there Tuesday and then will decide whether to go that route. But it takes time to set up radiation treatments, and I'm worried about the delay in starting. Will they try to rush me into their schedule, or will they push it to after Thanksgiving? I don't think I can deal with all this pain until then — and more than the pain, the uncertainty of how much this tumor is running amok inside me, what damage it could be doing.

Did I say how scary this is? At times, I have trouble keeping it together. Today, while I was standing over the kitchen sink, Steve asked me if I was OK, and I said, "Yeah." Then thought about it. "Actually, no. I don't want to be dying." Which probably was really melodramatic and probably isn't happening, but still — you never know how quickly these things can blow out of control. I just wish there weren't so much uncertainty. It's so hard not to know.

42 comments:

otrey3 said...

Emilie, the unknown can be frightening, indeed. I'm thinking back on the St. Francis de Sales quote (this is the long version):

Do not look forward to the mishaps of this life with anxiety, but await them with perfect confidence so that when they do occur, God, to whom you belong, will deliver you from them. He has kept you up to the present; remain securely in the hand of his providence, and he will help you in all situations. When you cannot walk, he will carry you. Do not think about what will happen tomorrow, for the same eternal Father who takes care of you today will look out for you tomorrow and always. Either he will keep you from evil or he will give you invincible courage to endure it. Remain in peace; rid your imagination of whatever troubles you.

Courage, my friend.

--Laura S.

Emilie said...

Thank you for this, Laura. It brought tears to my eyes.

Amy M said...

Emilie - I'm still praying for you and will never stop. You are in my thoughts each and every day.

Laura - You provided Emilie with a wonderful quote. I also found a lot to reflect on while reading it. Thank you for posting this for Emilie and for all of us.

All by best Emilie, all my best.

I'm sorry you are going through this.

Amy

Almamay said...

I just wanted to let you know I have you in my thoughts.

Betty M said...

I am thinking of you.

My b-i-l considered cyberknife for his brain tumour but in the end went with regular radiation closer to home. I hope tht you can started quickly whichever route you choose so you can ease the pain.

MrsSpock said...

Sending warm thoughts full of the invincible courage St Francis de Sales speaks of.

Wordgirl said...

I couldn't say it any more eloquently than those who've come before me here.

You are so courageous - writing here, sharing your stories.

Thank you.

I am thinking of you,

Pam

Not Strictly Spiritual said...

Emilie, It just so happens that I said that same St. Francis de Sales prayer this morning. I will say it again tomorrow and the next day and the next, only now I will say it with you in mind, praying that you will receive whatever you need to get through these difficult times. Peace, Mary

Monkeymama said...

That is a beautiful quote from St. Francis de Sales.

My prayers are with you Emilie, the uncertainty must be so difficult. I hope you get some good answers in the coming weeks.

Rebecca said...

I, too, love the St. Francis de Sales quote. I hope He keeps you from evil, and if not, I know you will find the invincible courage He gives you.

Roxane B. Salonen said...

Emilie,
I know that some days this is incredible fruitless, but whenever I start to panic about a certain situation, I try to take it one day, one hour, one minute at a time. There is another beautiful reflection that I think might help. You may have heard of it. "Just For Today." I'm sure you can pull it up through Google. I don't want to leave too long a post. Anyway, look it up if you have a chance. Blessings, Roxane

Roxane B. Salonen said...

http://www.nhal-anon.org/Just4Today.html

Here's the url to make it easier...

LutherLiz said...

There are better words here than I have to share Emilie but you are in my thoughts everyday and your courage is amazing to me, even on the days where you don't think you are courageous about it. *Hugs*

soapchick said...

I am praying for you Emilie! May your pain be lessened and may you be comforted.

natalie el-jourbagy said...

Be strong. You don't know me but my mom found your website and now I follow your blog. Much love and keep happy. Natalie

Sue said...

That does sound scary - I'm so sorry you're going through this. I am wishing you peace and strength.

Please make sure to ask your doctors about how Cyberknife's outcomes compare to outcomes from standard radiation therapy. The FDA approval process for devices is different than their approval process for drugs. The NY Times had a good article about this: http://www.nytimes.com/2008/10/27/health/policy/27device.html?scp=1&sq=radiation+therapy+&st=nyt

I hope you are able to get the best treatment as quickly as possible.

Emilie said...

Sue, thank you very much for that article. I haven't read much about Cyberknife yet that isn't promotional in nature, which concerns me a little. I'll be sure to ask them about comparative outcomes. (I also posted a question on one of the sarcoma boards.)

Jamie said...

I don't have much to say that's insightful but wanted to be another voice here who is thinking about you. I'm glad you take a moment to breathe and let the uncertainty creep in, but mainly keep being the bad ass you've been this whole time.

Jamie Proulx

NuggleMa said...

Emilie,

I've been following along - and no - in no way were you being melodramatic in your thinking and talking. You have been so strong for your husband, kids and self. You emotions are absolutely, completely okay. My prayers continue with you. My God's healing grace be with you and ease your pain.

Tracy Smith (A Thomas Morer)

Katie said...

Emilie, you continue to be in my prayers.

Anna's Mommy said...

Hugs and prayers to you.

darcie said...

Just wanted to let you know I'm thinking of you and praying for you Emilie - I hope Tuesday comes quickly for you and you get some much awaited answers...until then - I hope you can be comfortable - I can only imagine what you must be feeling...hang in there -
xoxo - darcie

bewhatyoumighthavebeen said...

Emilie,

I'm sorry to hear about the pain and uncertainty you've been experiencing this week. That must be so difficult to endure. I can undertand why you're scared and why you'd have a moment like the one you had with Steve. Who wouldn't?

You are so strong and so brave, Emilie, and not at all melodramatic. I hope you get some answers, and relief, soon.

Thinking of you,

Shannon

Roxy said...

Emilie - you are and always will be in our prayers.

SeaStar said...

Of course you're scared. Peace to you and may your fears come to pass.

Topcat said...

Dear Emilie,

I just wanted to say I'm thinking of you. At the moment, we are in the "waiting" time. My husbands chemo has finished and we are waiting on a scan, to hopefully see that the tumours are all gone, and we shall live happily ever after.

I hate cancer.

Hugs and love and prayers to you. XOX

Megan Thomas said...

Emilie,

Thanks for sharing your struggles with such candor. I hope that doing so helps you to handle what life has thrown your way.

Take care,

Megan

kristine said...

I hate your stupid cancer!
Emilie, there's not a day that goes by that you aren't in my thoughts. I know it doesn't make you better, but still... I'm thinking about you.

kristine said...

p.s. I know it's hard because you have to wait longer, but good for you for researching alternatives.

amy said...

Emilie--my thoughts and prayers are with you. I hope you get some answers soon that bring you some peace of mind. The waiting for information seems to be one of the hardest parts.
All the best to you and your beautiful family...

Piccinigirl said...

you are NEVER far from my thoughts, and I want you to know that melodramatic or not, I don't want you to be dying and I am praying very hard that it doesn't happen, that the appt and the radiation happens sooner than later and that you are breathing easier (mentally, physically and emotionally) very very soon.
With tears in my eyes and lots and lots of hugs.

Alex said...

I'm so sorry you're going through this. I hope you get some good answers soon.

Amy M said...

Thinking of you today and hoping that you received positive information at your appointment.

Molly said...

Emilie, I can't say anything more than what others have said, but you and your family continue to be in my thoughts and prayers. I found great peace in the St. Francis de Sales quote.

Madwoman of Preserve Path said...

Oh, Emilie. If you weren't scared, you would be superhuman. Perhaps your appointment will relieve some of the anxiety, and you'll feel more like you're taking charge of this, this rotten cancer. I will be praying for you, as will everybody you know. The prayer of St. Francis is so wonderful -- and so true. God has you in his hand, and wherever he takes you, you're safe. Meanwhile, I pray you get relief from your pain.

Love,
Pat

surpriseofunfolding said...

Thinking of you ... praying for you ...

Roxy said...

EMILIE - yes, I am yelling. I am going to call you. I just talked to my uncle and someone he knows just did this. PLEASE call me if you don't hear from me.

and check out

ceilsstory.com

Cibele said...

HUGS. I am so sorry

Michele (Moosh) said...

Emilie, I've been praying for you so hard...it's all I know how to do. My congregation prayed for you yesterday. Roxy just updated many of us and I want you to know that my heart, courage, strength--everything I can give you is yours and Steves right now. You are an amazing family.

Christina said...

If there's one thing you're NOT, it's melodramatic. It would be so unnerving to feel that pain and wonder about its origin...Uck! Hang in there. I am praying for you.

Gloria said...

Emilie, it's still so unbelievable that you're going through this and living this life! I'm sorry for all of the pain that you and your family are enduring. I continue to check in on your blog to see how you are and I'm always amazed by your courage and strength. Thank you for sharing that with us. Your 'letter' to Ben brought tears to my eyes and your writing overall makes me want to be a better person. I've been in a funk lately, but you've offered some inspiration without even trying. Thank you so much for sharing your story. I'm praying for you to get well.
Gloria (from the old msn ttc board)

Soupy said...

Oh Emilie:
I am in tears just reading this
~ why why why? I just want to scream for you sometimes. Hugs and know you are in my prayers.
Praying for good news to come your way.