Dr. Update

We met with Dr. Tim for a really long time. He was nice enough to stay for more than 2 hours. He believes that Jeff had too many narcotics in his system that relaxed his breathing. Jeff is only on his fentanyl patches and ibuprofen. He believes that a lot of Jeff's pain is related to the nerves. He is going to increase his nerve pain medicine. The thought is that with his cancer in the peritoneum it is irritating the lining causing inflammation of the nerves in that area. He said when the peritoneum gets irritated it can be very painful. Jeff's fluid in his abdominal area could also be contributing to the irritation.
Jeff is not going to do antibiotics at this point since he doesn't have any symptoms other than the wound site. Jeff's swelling has come down some, so Dr. Tim wants to put the diuretic on the back burner for now. We are going to work thru a list of stuff to get Jeff feeling better. The first is determining where the fluid in his abdominal area is coming from, so that can be treated and help with pain. He said that cancer is such a slow process that we have to get Jeff's strength and health back up first and then we can attack the cancer. He was sure to point out that we are not forgetting about the cancer, but we have to do deal with one thing at a time to get Jeff back to full speed. He was extremely optimistic with us and that gives us hope that Jeff can get to feeling better and maybe sometime soon be able to resume some of the things that he enjoys in life. Also we are going to get an appointment to get Jeff's stint replaced.
I went to a "Understanding Cancer Treatments" seminar at Lawrence Memorial Hospital last nite. They had a general surgeon, clinical trials nurse, medical oncologist, radiological oncologist (RO) and a naturopathic doctor (ND). I really took a lot from the ND and the RO.
The ND was helpful in the fact he encouraged people to seek his guidance when looking at supplemental or alternative treatments so the patient isn't just guessing. He said a really good quote that lit the fire in me: "Cancer shows no mercy on people, so I show no mercy on cancer." I couldn't stay around to ask him questions because the discussion was still going on and I had to get home for the Dr. appointment. I have e-mailed our social worker and asked for his contact information, so if Jeff is open to it we can go for a consult. He did say while he was talking that Vitamin C treatments have been shown to shrink tumors!
It gets better, if you can believe it! I did ask a question to the RO before I took off about using radiation to shrink the abdominal tumors despite the fluid in his abdominal area. We had been told that radiation would be painful in Jeff's pelvic region and that he could suffer from some form of radiation toxicity because of the fluid in the area. The RO answered the question that it really depended on what the fluid is and where it is coming from, so..... I got up to leave.
The OR followed me out!!! He wanted to inquire with me more about Jeff. I told him what we had been told about radiation treatments and that he had Stage IV colon cancer and that the surgeon last year put in metal clips where he left tumors, for radiation treatments. He told us that we should make an appointment with him because he felt that he could help Jeff!!!! I told him who Jeff's oncologist was and he said that he would get in touch with Dr. Ekram to get a run down on Jeff's case. I talked to Dr. Tim about it and he was encouraging to go and consult with him and see what happens. The RO left the conversation giving me his business card and telling me to call his office.
Over all we had an extremely uplifting evening. I feel there is hope again and you can see that Jeff feels it too. Dr. Tim is a blessing and exactly what we needed. Hope all is well with everyone.

Sort of an update

We still don't have any answers, but Dr. Tim has reviewed Jeff's records and we will be meeting with him some time Thursday night. Jeff has decided at this point that he is not doing any trials, but will revisit the subject after things are a little more defined regarding his health.
It seems there are three possible theories that have been floating around: 1.)he had a pulmonary embolism, 2.)he was overdosed on his medicine or 3.)his infection went into his lungs. Hopefully we will get more answers when we meet with Dr. Tim Thursday. Dr. Tim seems fairly certain that whatever happened to Jeff was not due to disease progression.
That is all for now. Hope all is well with everyone.

-Abby

Miracle

Jeff has pulled another one out of his butt!! Thank goodness for miracles. He started coming back almost full circle today. He is drinking fluids and is able to talk to people today. He started taking a few bites of food for the first time in at least four days. We met with a family friend Dr. We call him Dr. Tim. He believes the fluid in Jeff's lungs are not related to disease progression, but rather it is related to his infection. Jeff has decided to do IV antibiotics and a diuretic to help with the removal of some of the fluid from his lungs and other parts. Dr. Tim believes some of Jeff's fluid retention can be treated and give him more comfort. I have a phone call into oncology so they can get records to Dr. Tim today and he can talk to hospice so we can get the antibiotics going. I don't know where this puts Jeff and the plans for MD Anderson. We haven't gotten to that part yet. Jeff doesn't remember a large part of the weekend, so I filled him in this morning. He is processing a lot of information in a shorter time.
We are pretty angry with hospice right now because the oxygen machine they gave Jeff only went up to 5 Liters. Luckily a friend of the family, who is a nurse, stopped by Friday nite and told us Jeff should be getting more oxygen than that. We confirmed that it was safe for Jeff to go higher on his oxygen, so we ended up getting two oxygen machines and now he is set on 11 liters, although he isn't wearing it all the time now. I feel strongly that the increase in oxygen saved Jeff this weekend and had it not been for the friend of the family (Josh) I don't feel Jeff would have done the turn around that he has done.
I want to thank everyone that stopped by and brought food, everyone that prayed, everyone that sent good energy our way and for those of you that kept us in your thoughts. I will update as things get a little more defined. Hope everyone is well.

Latest Update

Things have changed drastically with Jeff. Most likely we will not be making the trip to MD Anderson. Last night Jeff started oxygen and is only able to walk about 10 feet to the bathroom and he has to take several breaks. There is fluid collecting in his lungs.
With oxygen his oxygen saturation levels were 44% this morning (normal is 100%). The hospice nurse said that she feels he is pretty far along in his progression. I asked her for timeframes and although she said it was difficult to put a time on it she thought he probably had a few days left.
Jeff has not been eating today and is drinking very little fluids. He is starting to have a cough and is sometimes coughing stuff up, which I think is good. I apologize to any of you that might have donated money already towards our trip to MD Anderson. There are lots of family and friends that are coming by to see Jeff and everyone is welcome. Jeff has fooled all of us before and came back, so I am praying that he is just doing it again. If for there is a turn around in his health we might still be going to MD Anderson. Hope all is well with everyone.

Trial Updates and Stuff

Sorry for such a long gap in updates. I have been researching and researching and researching. Here is the bottom line. We are leaving for MD Anderson next week, probably the 15th or 16th. They have 72 Phase I trials down there (Houston, Texas). They have Jeff's medical records, but he will be evaluated by a team of people Oct. 20, to see if he qualifies for any. We could be down there a a few days or a few months.
There are two other trials aside from MD Anderson that are possibilities, but we haven't heard back from them yet. Jeff has decided that those two trials and MD Anderson will be his last shot unless there is some miracle cure that comes out.
He is looking at switching his pain medicine from oxycodone to methadone. We were going to switch before our trip to MD Anderson, but Jeff's mom brought up some concerns about safety related to having oxycodone and methadone in the body at the same time. If we stay for a trial in Houston then we will talk to the doctor down there about switching him. If we don't stay for a trial Jeff will probably switch when we get back. He is building up a tolerance to the oxycodone and it doesn't appear to be working as well.
His wound appears to have gotten slightly larger and the mesh seems to have loosened and moved around. He still has an infection and has not completed antibiotics. He doesn't have a fever and only has the odor from the wound and the drainage change from last update.
We will be driving down to Houston and we are checking out programs to help us with the costs of the hotel rooms. MD Anderson has a once a year program that allows for 5nights of a hotel to be paid, but they are not for sure what will be available because of the recent hurricane that hit the area.
I don't like to use Jeff's Web site to ask for donations, but our backs are up against a wall at this point. We are hoping for the hotel thru MD Anderson. If anyone is able to help contribute please send money to our PO Box below that our friends set up for us. Just want to thank everyone for all their support. Hope everything is well. I hope I haven't forgotten anything.

Jeff & Abby Young
PO BOX 53
Lawrence, Ks 66044