Ive seen three Dr.s today. I'm not going into surgery tomorrow like we planned. Im enrolling in a clinical trial for melanoma, to see if taking all the lymph nodes out or just the sentinel lymph nodes (the ones that have already been removed) make a difference in survival outcomes. The hypothesis is that there is no advantage in taking more lymph nodes out. Im attracted to this study because of:
A: Scans. Lots of them. They are setting up a CAT and MRI within the next week. There is something comforting about having everything in the body on film. They will make sure there is no other signs of tumors so they can accurately stage the cancer.
B: Follow up. Lots of it. Every four months followed closely by these melanoma specialists.
C: The opportunity to help others with melanoma. If Im going to die, maybe it wont be in vain.
So they randomly select if you get further surgery on the lymph nodes, or no surgery but close observation.
After talking to the 2nd Dr. he said in my case he would not take chances and would take all the lymph nodes out. I cant help but agree with him, as I'm feeling like a leg amputation wouldn't be uncalled for to get the dang stuff out. Of course, really the danger now is not the leg, but the blood and the lymph that could be carrying the melanoma. So I think Ill wait and hope to get selected into the 'further surgery' group, and if not I can drop out and just have him do the surgery. Nothing lost, scans gained.
After surgery we start interferon treatment. This worries me, but if it might help, bring it on. The Dr.s are giving me a 50/50 chance of survival after all this. This has changed my way of talking about the situation as it used to be "probably going to die" to....I don't know yet, "might die?"
Now for spiritual experiences. There are just too many, I dont know which to tell.
Last night as we were driving home (and by the way, we pulled up at 2:30 am and the kids were still wide awake) over the moonlit nothingness of central Utah, I was feeling overwhelmed with the logistics of the therapy (who will take me to the Dr. daily for the first month, watch my kids, what if I'm too sick to take care of them, etc.). It was too much to ask anyone. I would be a burden to everyone around me. I couldn't see how this would all work out.
I got home. Cried when I noticed the lawn mowed, the house clean, food everywhere, basement finished. All the details up to chocolate on the pillows and leopard print sheets. There were flowers everywhere with cards.
One card had every word I needed to hear. It was from Jana (next door, amazing). The end of her card read "Please never feel like you are asking too much-there can never be too much. Just please keep asking."
Thank you Jana, I love you.
Have I told you about my ward of miracles? We have had some amazing things happen with ward fasts. Bishop Jensen is calling me the next one. When I hear him say it I totally believe it. They fasted for me today. We broke it at YW/YM tonight. I just want to thank you all. I have felt so much peace today. Everything is going to be okay, either way.
Oh wait, Dr.s orders today: POSITIVE ATTITUDE.
Im going to need some help on this one.
26 comments:
You are going to keep being amazed, there are hundreds, maybe thousands of people with you in their thoughts and prayers. And a hoard of people who would give anything to do something for you. You will never have to worry about who will help you. You'll have to careful about letting them all get a chance! Also, Sonja has all by bought tickets to come to Utah. I can come anytime too. See you soon, love x a zillion
Dear readers of this blog, I love you too. I don't think being a mom was ever harder than these last few weeks have been, and you have made such a difference for me, really, may you someday know the depth of my gratitude! Alisa's mom
I will be there for you to help with your kids and your dishes. I can't wait to see you.
We are waiting in line to do whatever would help you now and in the near and distant future. If one of us is unavailable, there are at least 20 or 30 others who HAVE ASKED what they could do (babysitting, cooking, cleaning, etc.) I guess you have maybe realized this by now but I wanted to reassure you again.
A couple thoughts that describe what your RS sisters have been feeling:
"Comfort those who stand in need of comfort..."
And from this month's VT msg: "...Except ye are one, ye are not mine. This great unity is the hallmark of the true Church of Christ. It is felt among our people throughout the world. As we are one...we are his...We pray for one another that we may go on in unity and strength."
We all love you Alisa and we're close by to help.
- Julia
I just want you to know we Love you lots.
When the bishop told us sunday about you I cried and felt so bad . When you talked about How Lehi is your happy place I know over the 11 years we have been here we have had lots of ups and downs our Son David does not like Lehi but Lehi gave Daniel what he needed to run and go on his Mission and it is helping Jesse get ready for his mission and it has given Regina this last year what she needs to make her fell good about her self and you have been alot of this. She loves you .
We just want you to know if you need any thing I mean any thing we are here 100% just call and we will be there.
You are so strong you will over come this and be back to normal soon and the Cancer will go away and stay gone. I know you had to pray alot and I know the Lord will bless you and will keep blessing you . I know this ward will keep praying for your health as well We Love you and will keep you in our family Prayer.
Love
The Urry's
Sounds like you have an amazing ward and a lot of amazing people around you. Don't forget that I'm just on the other side of the R.R. tracks. We can still be friends right?! :) My Mom is a big time believer in mental power, so now that you know your odds are even, let's stick with the "I'm going to beat this" side! You can do it!
Alisa,
My mom called to tell me your news during card group. All my friends were sitting around watching me cry. A few of them know you (Kathy, Cherish) and wanted me to send their love. Our family is fasting and praying for you, Josh, and the kids. Our thoughts are with you. We also offer any and all services that are needed. Remember, we're close by. We love you and your family so much!
Jill, Mike and Kids (The Dickeys)
As mom once told me (when I called someone the bomb), You are a bomb to me too, Alisa. I'm here to help. Just give me a call--I'm flexible and Seth would love to see Luke.
Alisa and Josh,
We wanted to let you know that when we heard about your situation that we immediately joined in the fasting and prayers. We thought that you may want to add Washington state to your list of geographic locations where people are praying for you. Seriously, we are so glad to hear that you are feeling more positive about your treatment options and prognosis. Both my mom and my brother-in-law have participated in cancer studies over the past few years as part of their treatments, I know that it has helped somewhat to know that they might be helping people in the future. (They are both still with us and doing well, by the way, so we have great hope for you.) :) Your strength and your words have truly inspired us. The love and support shown you by your family and the amazing 29th ward have also elevated us. Thank you for your example. We wish you the best. You will continue to be in our thoughts and prayers.
Love,
Anna & Emil Pierson
Alisa and Josh,
You are mentioned in every prayer in our family, and you are never far from our thoughts. We have realized anew how much we love you all. At Murhph's "farewell" this past Sunday, we all cried and talked together about our love for you and our desire to be of help.
We love you.
Alisa & fam--
Glad to read the update. You are in my thoughts & prayers constantly. Maybe I live in Sandy..but I'm just around the corner....call ME too. A little pkg is coming your way, watch the mail for it, just an added reminder of HOPE and the power of it. As to the interferon....we are veterans and can answer a lot of your questions. Don't hesitate to call me.
Love you guys!
Buffy
Thank you for doing this blog. There are hundreds of us who have fasted with your family and who are praying for your miracle, and for you and Josh to have the strength you need to get through this. This allows us to check up on you whenever we are wondering how things are going, without having to email your mom. At times like this, I wonder what people do who aren't surrounded by a ward family who can step in when families need help. You are truly blessed to be in such a wonderful ward. I also know that they are lucky to have you there to bless their lives. Good luck! You can do this Alisa! You were never one to shy away from a challenge, and you always attacked challenges with a gusto that said you were confident you could surmount any obstacle. Keep up that attitude!
Hooray for the leopard print sheets! Who ever did that is way cool, and I wish I would have thought about it myself. I second everyone's comments. I'm proud of you for your attitude and for participating in the study. Can't wait to hear more. Also... just because I live in Orem, doesn't meet I wouldn't drop EVERYTHING to drive you to an appointment, clean your toilet, or rub your feet. (Ooh.. would you let me paint your toenails? I have some ideas!) xoxo
You know, there are purposeful and noble duties for a rat: just be glad that you have those. Whatever: you are far from being a rat. Out of a 50-50 chance of living or dying... I choose living. "Life, or DEATH?!" "Um.. I'll take life." "Shoot, we're gonna need more life."
Alis, with your attitude and stubbornness you can beat anything. I am still here, thinking of you daily. Thanks for keeping us posted.
Alisa, if there's one thing you've taught me, it is that the universe can get you anything...my order is in, you are getting better!!! But seriously I am praying for you and will come out there in a minutes notice if you need me.
I think you are doing everything right- and you have so many things going for you..I can take Luke a couple of times during the week--Ethan would love it! We'll be in touch after we find out what the treatment schedule is like--I could take him too during appointments. Just drop him off on your way out!
Trish
Hi Alisa,
We love you & include you in all of our prayers. Your strength is inspiring - we're all thinking of you!
Eric & Emily Stauffer
Dear Alisa's Mom,
I have thought a lot about you during all of this. I think of my own daughters (& son) and how much I would want so much to be there to comfort & care for them. We are praying for you & your family too!
Much Love,
Mary
Hey Alisa,
I can take Luke and Sam on Monday, Tuesday, or Friday. Joshua would love a buddy + we have trains!
Leah
Alisa, let me know when you want me to come to your house and help. I emailed you the particulars. I love you with all my heart!
Alisa,
You have always been such an inspiration to me... now more than ever. As I sit and read your goings about (with tears streaming down my face), I can only feel a sense of peace to know that YOU KNOW what a fabulous little family you have and that is all that matters in life. I have such good thoughts for you and I can be at your service for anything, anytime... I love you! Lindsay
Alisa
John and I out here in Bloomington Indiana are thinking and praying for you. Thank you so much for chronicling this for those of us far away on your blog. You write wonderfully and so beautifully about your experience with this. I am grateful to be related to you. I love you.
Julie (Johnson) Searcy
Alisa, I am sad to catch up with you under these circumstances! Natalee let me know about what you and your family are going through. You are in my prayers! Thank you for keeping us updated. I'm sure you have friends who you don't even realize are reading this and praying for you.
I cann't stop thinking about you and your cute family! mary and I were talking and wondering what we could do for you all, so please know that there are so many people who are willing to help and would be grateful for the chance!I found this qhote the other day and I think it is my new motto-"Life doesn't have to be perfect to be wonderful!" You are an amazing person and an example to us all. our prayers are with you!much love,
kecia
Hello, we have never met but my sister in-law is friends with your sister Sonja. My sister in-law called me last night to tell me about your story and today she sent me a link to your blog. I live in Logan, UT and am so inspired by you. You are a very strong person with a beautiful family. You make me want to be better as a wife and mother! Thank you for sharing something so personal. My thoughts and prayers are with you and your family. Good Luck! Love, Cordie Tippets
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