Thursday, October 27, 2005

The Pound-a-Day Diet

I really ought to adopt Dalton's diet plan considering that he lost seven pounds in six days. Today was the hardest day for me yet. Something about being back in a cancer center made the reality of all this sink in. After handing the keys to the valet attendant (a complementary and seemingly required perk for all of us cancer types), we finally arrived at the admitting desk, the first stop for all new patients. Either USC is "registration challenged", or we are. Every time we find ourselves in a registration situation we end up staring at one another asking, "Where are we supposed to sign in?" In an effort to create a comfortable, inviting environment for patients and their families, USC has neglected all common sense. There is no sign in sheet. Instead, there is a lobby/parlor in which to make yourself comfortable until someone is available to greet you. This seems like a great idea except when all of the "hosts" are on breaks or there are 20 other guests also waiting to be welcomed.

Regardless, the homey atmosphere quickly disappears after being asked the same demographic questions and signing the same 10 forms that we have signed on six previous occasions this week alone. For those who haven't been to the doctor in a while, the new big thing is patient privacy. Every time, and I mean EVERY time, you visit a new doctor or clinic, you are given a 2-4 page booklet describing patient privacy practices. Don't fret if you haven't received one yet, by the time we are done with this we should have enough for all of you. Just email me for your free copy.

Anyway, we were brought to a room and the "first nurse" proceeds to ask Dalton a series of questions. The first was the most disarming:

1) So, why were you referred here?
- realize that this is the Norris CANCER Center

After explaining the basics of his symptoms to "first nurse", we were visited by "real nurse" who had a bit more information about Dalton's condition. In fact, her first words were, "So, I hear you don't like Ensure!" We talked with Marie, who is actually Dr. Iqbal's Nurse Practitioner and right hand woman, for quite a while about pain, food, and family history. She did a quick check of all the pertinent lymph nodes which looked to me like she was feeling up my husband. Then she left us alone to wait for Dr. Iqbal.

Dr. Syma (pronounced Sigh-ma) Iqbal (pronounced ick-ball) STOP LAUGHING! is a perky Middle Eastern doctor who specializes in gastrointestinal cancers. She quickly got to the business of discussing treatment options which were really more like treatment plans. Fine by us; best to let the experts do their thing. Apparently the whole gene expression, predict the tumor response thing really isn't relevant to Dalton's case as they need to go with the chemo that has the best radiation sensitizing properties. What that means is that Dalton will be getting a continuous dose of 5FU and a bi-weekly dose of Oxaliplatin. The radiation will start ASAP but it requires yet another doctor's involvement. We see that doc on Monday and will find out more at that time. The 5FU requires that Dalton have a central line put in which is basically a semi-permanent IV tube that will hang out from his chest. Fun, fun, fun. Dr. Iqbal talks about the goal still being to shrink the tumor and eradicate the spread so that Dalton can have surgery, but she is a bit more reserved than Dr. Demeester. She mentions the possibility that may not happen, and if it doesn't, then the focus shifts to controlling the cancer rather than curing it. This possibility is very discouraging, and she reminds us that because of Dalton's age and family status, everyone is emotionally invested in seeing him cured. But, there is only so much they can do.

We ask about alternative pain relief, food choices and our chances for having more children. She points out that the chemo may cause sterility and that banking little swimmers would be the best option if we want more kids. However, she is also realistic about the possibility of me being a single mom and strongly recommends that both little Dalton and Iain have genetic testing. Because of the age that Dalton, his sister, Kathleen, and his mother, Joan, developed their cancers (all of them were in their 30's), she suspects that there is some genetic cause. If possible, she wants the youngest members of the family to know ahead of time that they need to have regular screening. For these reasons, Dalton and I decide that Iain will be our first and only child. If God spares Dalton and we have the opportunity to enjoy many more years together we will gratefully find fulfillment in each other and the family we have been given thus far.

I lost it after Dr. Iqbal left the room. Clearly upset, Dalton asked me what was wrong and I started to cry. My strength and focus on recovery failed me and I was scared. It lasted just a few moments and I felt the need to apologize, but the truth is that I just didn't have it in me right then to be strong. Dalton is the love of my life. I don't want to lose him this soon. I don't want Iain and little Dalton to grow up without their father. I don't want to watch my husband go through this hell. I know that I am powerless to change any of these things and can only pray for God's mercy and healing, but there are times when in my human weakness that isn't enough.

So, for today, I resolve not to squander our time. I will pray. I will find joy in every day and every moment that we have together. I will play with my baby and hold my husband's hand. And, I will pray some more.

Our next appointment is Monday with the radiation oncologist. Then, Dalton has his central line implant put in on Wednesday. Chemo starts Thursday. In the meantime, I still might consider adopting Dalton's diet. Seven pounds in six days may be lousy for him, but it would be great for me.


Anonymous Anonymous said...

In the middle of a crisis isn't just like a man to ask with all sincerity, "what is wrong?" "I thank God for you, mentioning you in my prayers. I continually remember before our God and Father your work produced by faith, your labor prompted by love, and your endurance inspired by hope in our Lord Jesus Christ." I Thes.1:2-3
Laughing with you, crying with you, and praying with you.
Love you,

9:46 AM  
Anonymous Elaine Sevilla said...

Tricia, you too, are the love of Dalton's life... he used to tell me all the time. Your trials call to my mind the story of Job - remember to keep your faith despite adversities. I marvel at your strength of spirit, but it's alright to break down sometimes. When you do, take heart that there is an army praying for you as you go through this difficult time yet again, but ultimately He will lift you up.

12:06 PM  
Anonymous Anonymous said...

Hello, I am Nick. I am the person who referred you to Dr. DeMeester.
I have been through your blog & I am totally aware, emericaly, what is going on. What both of you are going through! I have been there, felt it, hurt, done it, chewed it unable to swallow. Chewed the food for the taste.
I am here to tell you that DeMeester is "The Man!!!" I am living proof that he works majic...
Please do not hesitate to call me.
My number is: 818-504-0333 at home and at work, well you know it...

6:23 PM  
Anonymous Anonymous said...

Hi Tricia - has anyone told you what a good writer you are? And that you are a WONDERFUL wife and mother. We are following your blog daily and praying so much for you and Dalton. I'm getting him on other prayer lists as well. Please keep us in mind if there is anything we can do for you. Love, Michelle and Mike Lowe

9:27 PM  

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