It is crunch time for a decision to be made in regards to treatment. It is known that if a cancer patient is to do conventional treatment after surgery they are to do it within 6 weeks post op. That would put me at this coming Tuesday the 19th.
I am struggling with the fact that if we are to follow Dr. Yung's treatment should we seek another oncologist & radiologist in the area that would follow out his advice of radiation alone then oral chemo (Temador). There are other treatment centers that offer the IMRT. I am weary of seeing MORE doctors. I also am unsure if seeing more doctors is what I should do. I would love to do a less invasive treatment plan of radiation (XRT) alone than with chemo. Although my cancer might need the "big guns"- XRT & chemo. The side effects of chemo are 1. fatigue 2. constipation 3. low blood count (specifically my bone marrow will be effected which in turn results in increased infection and possibly luekemia). The possible side effects of XRT are bad enough. Of course, I think cancer is B-A-D.
On a side note the dosage for chemo with Dr. Yung's plan is 380mg (which is quite large) after the XRT. The dosage for Dr. Linette is lower (140mg) during the XRT and (280mg) after. I am not sure what is better.
I am struggling with the fact that if the Barnes Tumor Board discussed my case last Monday eve, then a group of physicians cannot be a bad thing. I hold to the fact that "In a multitude of counselors is wisdom". I guess you could say that for 3rd & 4th opinions as well. I would hate to drop the Barnes physicians like a sack of potatoes. They are known to be great physicians in the midwest. I also wonder if Simpson & Linette are worried about liability. In short there is NO STANDARD treatment plan for my type of cancer.
I have a simulation scheduled for today at 1:30 with the office of Dr. Simpson at Barnes. I would love to have a decision made prior to noon today. I may make some MORE phone calls to see if any oncologist would be able to see me PRONTO (today or Friday). Pray also that a contact can be made to Dr. Yung in Houston today. He is only in the MD Anderson clinic on Tuesdays so that will be difficult to get a response. Not too difficult for God. He will go before me as He has been doing. I would love to discuss with Dr. Yung his deep reasoning for doing the XRT alone. He might be a doctor that needs concrete evidence to do the XRT/chemo treatment.
Yes, I am up at the wee hours of the morning typing this update. I fell asleep on the couch last night and woke up at 12:45 am.
Continue to pray for phone calls, clarity, peace, direction, WISDOM! Too many decisions- This is almost worse than the surgery itself. While you are approaching the throne, please pray for the Morris family, friends of mine who are in a difficult time. One of their twins, Meagan died at 8 days old. The funeral was yesterday. My heart aches for them in their loss.
Kate
2 comments:
Morning Kate:
We are continuing to pray for you, Chuck-sorry Dave, your family, caretakers, and friends daily here in Indiana. This has to be such a difficult decison. Is there any way the Barnes doctors would allow you to just do the radiation for 1-2 weeks and then start the radiation/chemo together after Christmas or the new year? This has been my message from God for the past week- I don't know why, but I don't question his response to my prayers either. Maybe if the doctors see you are willing to try their way they would try Dr. Yung's advice for 1-2 weeks, especially since the holidays are within the next 2weeks. Maybe you can say that you don't want to do the combo just yet, you want to ease into the treatment, at least you are starting the radiation in the alloted time which is what is really important. You are the one who has to go through the treatment and possible side effects- not them! Will the doctors not do the radiation if you don't do it their way?? I don't understand the all or nothing approch on their part. Are you having any pain? I know how "pushy and legal minded" the doctors can be. Sometimes the lawyers and insurance companies are the ones making the decisions instead of the doctors. I do agree that the mtg with the board was a great idea and a blessing even though it made things hard for you. If the oral chemo is a lower dose than what Dr. Yung wanted later maybe the treatment won't be so hard or invasive on you. Please ask for some Zofran or Phenergen or Compazine for nausea--just to have on hand if you need it, it is better to have it and not need it, than to need it and have no way to get ahold of the doctor or pharmacy (just my experience with CA patients). Anyway that is just my 2 cents worth.
I will pray for the family who lost their precious baby. As someone who has lost 9 babies (through miscarriages)I can somewhat relate to the agony and grief they are experiencing. If they would like to talk or vent or need support from someone who kind of knows what they are feeling please give them my number or email address. I don't know what it is like to loose a full term baby, but the miscarriages have given me empathy and make me truly appreciate Arwen and Sebastian. Even though they are "teepeeing" the upstairs as I type this! All childre are a blessing-medical problems or not.
Take care Kate and I will continue to pray for you. We will miss you Christmas Eve, but we also understand why you aren't going to travel too.
Danielle
Kate,
Just letting you know that I am praying for you. I don't know the answer, but I know you serve a awesome and faithful God. He will guide you even when you don't know which way to go. Trusting that you will be filled with the peace that only He can give as you make this decision.
Nancy Peterman
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