It was a very easy appointment today, for which I am quite thankful. We took Tyler with us and he was so easy, except right when the doctor came in he announced repeatedly, "I want to go home now, please." Bill and I couldn't help but agree with him. Four pounds were lost last week... No surprise, I had a feeling that was coming.
City of Hope takes pride in treating the whole person. In every room they have a framed version of "Why treat the body if the mind is still broken?" Their claim to fame is all of the extras they (supposedly) offer patients. We asked about seeing a nutritionist and the response was the same as when we asked to see a counselor, "You have an HMO, so it won't be approved." You have to be a "cash" patient or on medicare to get the services they promote. The bottom line, you have to be very rich or very poor to get anything other than medication. The middle of the road patient is simply out of luck. The sad part is, nothing surprises me anymore.
I debated writing about this on the blog, but here it goes. We found out today that there is a situation that could possibly force the doctor to exit Bill from the trial. He has a random (rather frequent) diarrhea problem. I watched the doctor and nurse "stage" this problem on a chart and since he was a stage II, it was acceptable. If it gets any worse, then he could be disqualified and removed from the medication. The doctor told him to take Imodium regularly to see if that will help... Bill's comment was, "It's really a crap shoot." I was the only one in the room that got it. ;)
I am so looking forward to this week being the "good" week. Last night was the last pill, so hopefully tomorrow he will start to feel a little less tired. I am going to try to drag him to see a movie tomorrow - whether he wants to or not. Every weekend should be a 4-day weekend! Happy Veteran's Day!
**Response to my brother's comment on the last post about giving a 3rd grader a Starbucks coffee.**
1. They make decaf and kids now-a-days love coffee drinks. ("now-a-days"?? I have turned into my mother.)
2. They also have non-coffee drinks - ex: fruit smoothies, sorbet slushies, etc.
3. I could get him full caffeine first thing in the morning and play a little joke on his teacher... haha just kidding, Terri!
That's How You Know
1 week ago
3 comments:
Hello. My name is Kathy and I stumbled upon your blog via Bishop Amat's website. I started reading your blog a few weeks ago and I find myself addicted to your writing. I now need to know how Bill is doing. I think I mentioned that Bill and I graduated together but we really did not know each other. My maiden name was Padilla.
I believe I shared that my son was successfuly treated at City of Hope. I am so sorry that you are running into snags with the insurance end of things. My family practically lived at City of Hope for a year so we made several valuable connections. There is a woman there who is a child life specialist. She works with pediatric patients as well as with children of adult patients. I can put you in contact with her if you want me to.
I know City of Hope also has many free support groups. There is a writing group that meets regularly. I think they would love to have you.
I do not mean to impose myself on your situation but I would love to help you. I think you will find, like we do, that your life will now be divided into B.C. (before cancer) and A.D. (after diagnosis).
Please feel free to e-mail at vanillofamily@earthlink.net
Continued prayers...
Thank you,
Kathy Vanillo
Hey Jackie-
I pray that Bill will be able to continue his treatment at City of Hope.
I know that Bill's situation is way different from mine, however, I take Immodium AD everyday for constant diarrhea related to Crohn's Disease. I so hope that it will work bathroom miracles for Bill the way it does for me.
HUGS HUGS HUGS, Char
Hello, I also stumbled upon your blog via Bishop Amat's website. Dr. Hemenway posted a request for prayers. My daughter currently attends Amat. I have read all your postings and I can only imagine how difficult this is for you. Until recently, I worked at City of Hope for 19 years. It really is an amazing place. I know Dr. Chow and he is one of the best! I'm sorry that you have run into problems @ City of Hope, because it really is their mission to make things easier for their patients and their family. If I can help in any way, please feel free to email me. I will continue to keep your family in my thoughts and prayers.
Carmen Moronez
czmoronez@verizon.net
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