Friday, April 28, 2006

Hurry Up and Wait

An update in two parts:

PART ONE
On Tuesday the 4th, Dalton spent the day at the radiation oncologist having scans, simulations, and ultimately treatment. What normally takes about a week was accomplished in a day. As a result, Dalton was able to have chemo on the 7th. The docs remained unsuccessful at removing some of the fluid from his abdomen, so he continued to suffer with a lot of pain, but at least it seemed like we were on the right track.

On Saturday the 15th, we celebrated Iain's first birthday. Believe it or not, Dalton was out there BBQ-ing dodger dogs and eating nachos. I can remember a time when that would have been commonplace, but under the circumstances, it was extraordinary. We spent the next two days recovering, but it was well worth it.

PART TWO
CRAP both literally and figuratively. For the past week, Dalton has been enjoying the fabulous incompetence that accompanies a stay at USC Norris Hospital. To be fair, I've some to the conclusion that all hospitals practice the art of incompetence, but it seems to be especially evident whenever Dalton gets trapped at Norris.

I arrived home last Wednesday the 19th to find Dalton unable to move or talk. When he finally felt able to tell me what was going on, he said that he was in excruciating pain and that his abdomen felt as though it was going to explode. Since he didn't want to move, he insisted on waiting until Thursday to go to the doctor. They did an x-ray and proclaimed that he was full of crap all the way up and they began the process of getting rid of it.

Many unspeakable things later, nothing had happened and Dalton felt no better. Yet, somehow, they claimed the new x-ray showed that he was all cleaned out. At the docs urging and cajoling, Dalton agreed to another CT scan. Reluctantly, he drank 32 oz of Barium (horrible when you are ok, unbearable when you all bloated and distended beyond recognition) only to learn that the nurse had sent the CT tech home and he would have to wait till tomorrow and do it all over again. At that point, we agreed that it was time to go home. Dalton put on his pants and I told the doctor that we would be checking ourselves out. Amazingly, they managed to locate the tech and Dalton's CT was performed without him having to endure more barium. Here is what they found:

There was no crap in his bowel. There was cancer all around it. The tumor(s) had grown like a web in between the outer part of the bowel essentially trapping the bowel and all that extra ascites (fluid that is a cancer cell waste product), making it impossible for the bowel to contract and move food and crap along. This not only stopped things from moving along, but caused great pain. They had to find a way to get things moving again and fast. Thankfully, they were finally able to suck out some of the fluid allowing enough room in Dalton's belly for the intestines to work again. Once that happened, he was able to start eating again and they let him go home.

While he was there, they started the second dose of chemo. At the same time, the oncologist expressed some concern that it may not be working very well based on what he saw on the CT. It sounds like they will do another CT in a couple of weeks, and if things don't look better, we'll be switching chemos.

All of this brings us up to date medically. Emotionally and physically we are wearing down. Cancer is funny because it is like trying to outrun a train. It takes a while for the train to get moving and for a bit, you can stay ahead of it. Then, it seems like all of the sudden it has momentum on its side, it passes you, and no matter how desperately you try, you can't seem to catch it. I think that's how we feel right how - desperate to catch an accelerating train. Physically, Dalton can feel and see his body being overtaken. I can see it as well. Even though the cancer is inside, it leaves outward calling cards of what it is doing. Bony shoulders and arms, bloated belly, persistent violent cough, difficulty communicating (probably from the increasing pain meds), and a limp caused by the numbness in his right leg. I feel like I need to be home all the time or he forgets to eat, forgets to drink, forgets to walk, forgets his medicine. I've started to do my grocery shopping online, and that's helps a bit, but it's hard to cook and clean and exercise and do laundry and take care of myself. Laugh if you must, but my eyebrows really need a wax! So many people have offered to help, but what could I have them do? Dalton will accept the help from me, but with others, it's a reminder of exactly how bad off he is. There are a million little things that need to be done (going to the bank, paying bills, picking up prescriptions, getting to the dry cleaners, and filling out disability forms), but none seem big enough to ask for help. I suppose it's the aggregate that is so overwhelming.

Anyways, it's time for me to get back to work. Thanks for reading. If you made it this far, you are a real trooper.

Keep praying for a miracle.

11 Comments:

Blogger angie said...

Yes, of course we are praying for a miracle.
My name is Angie and we met at Malachi's memorial service. Thanks for the time to speak with you.
i have been checking the blog everyday for news. I'm sorry it's such a speeding train going someplace you all don't want to go.
congratulations of Iain's birthday! So proud of all of you.
i can pay bills for you.
Angie Ten Napel

1:29 PM  
Anonymous karen said...

every day tricia!

10:31 PM  
Anonymous Anonymous said...

Dear Tricia,

Everyday, in so many moments and in so many ways, we are thinking of you both and praying...for a miracle. I was cleaning out the refrigerator the other day, thinking what a boring task and realized how easy it is to do. And thought of you all and how you would wish for anything to be easy at this point.

I wish I could help in some specific , physical way, but will continue in prayer. Thanks for keeping us posted . You all are on the prayer list at our church, too.

Love,

Dawn & Diane

8:59 AM  
Anonymous Jeanette Newton said...

May God's Holy Spirit well up in you both, and refresh you with rivers of living water...cleasing and healing with His miraculous
power!
Amen

7:36 AM  
Anonymous cristina wilcox said...

Not so much to Tricia but for everyone reading this: Can we somehow set aside one day a week that one of us can take a list of simple errands that need to be done. Tricia could save up a list, knowing that one day a week she will have to give someone some stuff to do. I will be back in LA the second week of June and want to do this. Call me 845-440-6812 and we can start working on some kind of schedule. AND TRICA is NOT ALLOWED to say no. Everytime she is tempted to run to the bank or run a load herself, she can go take a walk instead.

8:56 AM  
Blogger Cindy Renie said...

Dalton & Tricia. continuing to pray for you.

great idea Christina. let's also make sure that making the list is not another stress for tricia. i have a kind of pre-fab email grocery list that i use. i will email it to you through edwards site. perhaps there can be a mian list & she can just circle the things needed. ie: pharmacy, pet food, dry cleaning, diapers, bank. i can help facilitate the list before you get home...

cindy renie,
cindy@reniedesign.com
818-763-7485 office
818-421-4848 cell
323-462-0859

9:49 AM  
Anonymous Anonymous said...

Dear Tricia and Dalton,
Just want to let you know that all of us in Dalton III's class are thinking about you daily. I check the blog for updates all the time and am so grateful that you make the time in your obviously busy schedule to "keep us posted". I so admire the strength and resiliency you have exemplified during this arduous and painful experience. Please know that you are in all of our thoughts and prayers.
Tina Conner (Dalton's teacher)

10:50 AM  
Anonymous Anonymous said...

That is why I am alive Tricia. Because during my many years with cancer, people prayed for a miracle. And I so relate to what you said about asking for help...
I have never stopped praying for your family and I know that right now that is all the help that I can give you.
Cleve

8:24 PM  
Anonymous Anonymous said...

Dear Tricia:

Have been thinking about you both on and off for a few weeks now, even though it has been a very long time since I have seen either of you. Circumstances are thus - just wanted to let you know.

None of us reading this can imagine what you are going though - individually or as a family. You describe it so well in your writing, yet still it leaves us unable to really grasp how awful this is for you both. Only you and God know.. and only He can give you real, true, rest and comfort.

Love to you - and please send my love and best wishes to Dalton...

~Tanya.


"Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.".."

Matthew 11: 28-30

12:24 PM  
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