Jeanine again

A few days ago, Jeanine went back to the radiation oncologist and he suggested that it was time to radiate the other tumor that he had told her about. She wanted some more time to recupe from the previous radiation, so she will go back a week from Monday and make a decision at that point.

Jeanine, my sister, Mardy, and I talked to the PA for her original oncologist today and the PA confirmed what the oncologist had already said. There is nothing more that he can do for her. Jeanine cannot have any more chemo. The PA suggested a call to a hospice. Jeanine had hoped that when/if the biliary tubes were unblocked, she could go back to her normal (for her) lifestyle. The PA inferred that it was time to quit fighting, but said that they would support her if she decided to continue to do so. The PA also said that in most cases radiation is allowed in the hospice environment when it is done to provide pain relief. Jeanine now has a big decision to make and she is the only one who can make it. The PA also told Jeanine that her bilirubin levels have risen again... It is now at 30.

Jeanine continues to live at home. Mardy and I, along with a good friend, take turns staying with her. In a couple of weeks my brother, Dave, and his wife, Laura, will move in with her for an indefinite period of time. She mostly sleeps/daydreams her days away, but every once in a while, she'll get a burst of energy and do a little cleaning or bookkeeping. She is still very aware of her surroundings and even if her eyes are closed, she knows what is going on most of the time. She enjoys visiting both on the phone and in person, but tires out quickly.

Jeanine

Last Thursday, Jeanine met with her Radiation Oncologist. He told her that as they had done the work-up on her liver, they had found that there were actually 2 tumors that could be affecting her biliary tubes. They were radiating the top one, but there is a lower one to the side that also could be causing the problem. He said that they could not radiate both at one time, it would be too hard on her liver. He told her that after her radiation was done and she has had time to recupe a little, they will check and see if radiating the other tumor is an option or is necessary.

On Friday, Jeanine went to see her Oncologist and he told her what he had told me. She is seriously ill. He told us of things to watch for. He also said that if her bilirubin goes down somewhat, she should plan on checking to see if the clinical trial would still take her. She had a blood test on Thursday and he had those results. Her bilirubin was 22. It was 7.5 when she was in the hospital 3 weeks ago. Her test a week later showed that it was 17. The normal is 1.

He also told her that her potassium levels were rising. He prescribed a medicine that she was told to drink. She got most of it down before she threw it up. When she called him back, he told her to limit her ingestion of fruit instead.

Jeanine has finished her radiation schedule as of today. She had her 5 days of radiation. We were told that it is called surgical radiation because of its pinpoint accuracy. With the exception of some extra pain and severe tiredness, she had no serious side effects.

Today the radiation tech called me into a room and told me that he wanted Jeanine to see the PA. The PA and the tech said that she is much more yellow than she was. It was no surprise to her. She had told me this morning that this was the case. The PA will talk to the radiation oncologist tomorrow and decide if she needs to see him ASAP or if she should see him next Tuesday at her regular appointment. The PA did say that the radiation takes a little time to "cook", so there is still hope that it will help.

Jeanine's next step

After Jeanine came home from the hospital, we went back to see her Oncologist. He inferred that there was one last thing that could be done to unblock her biliary tubes. He told her she needed to go to a Radiation Oncologist. While Jeanine was otherwise busy, I talked to the oncologist myself and told him that Jeanine was living by herself at home. He suggested strongly that she is in a very precarious situation until she can get the biliary tubes unblocked. He said that someone needed to be with her most of the time.

This was my cue to move in with her. I did so on Wednesday. This cannot be a long term solution, but until we find out how her radiation is working, I will be with her at her home. I am not there 24/7 but pretty close to it.

The radiation oncologist met with Jeanine on Wednesday and told her that he can do pinpoint radiation on the specific tumor blocking her tubes (or are they ducts?). He also told her that there is a "fair chance" that it will work. You see, renal cell carcinoma is resistant to chemotherapy and radiation even if it is in the liver. He estimated that the chances were 50/50. That has made for a very nervous woman.

Jeanine is still a very vibrant yellow and the whites of her eyes are a nice yellow also. She gets very tired, manages to not throw up if she takes her anti-nausea medicine, has a lot of pain, and eats like a bird, but at least she is eating, she didn't in the hospital.

Jeanine's radiation begins Tuesday and she will do 5 weekdays of high-dose radiation. The doctor expects few side effects. The ones he mentioned were extreme tiredness and nausea. They said that it won't burn her skin or anything else but the tumor. The procedure that they are doing with her was developed for brain tumors and is very precise. She would welcome your prayers.

Jeanine comes home

Thursday Jeanine came home from the hospital after a roller coaster day. For the first time during her stay, her oncologist came in to see her. We know that he had been in communication with the other doctors because they had mentioned it and yet, Jeanine took great comfort when he came in. He is extremely intelligent and wants to try everything he can to help her. We are told that he remembers each patient and their treatment history. He also remembers the various treatments that are available without needing to look them up.

He gave her some options. First he told her that they might be able to implant radiation pellets in the liver that would deliver a powerful punch to the cancer, they could use radiation to decrease the tumor in the liver, they could go ahead and do the drains, then deliver targeted therapy to the liver. The decision was made and Jeanine was sent to the intervention radiologist to have a drain installed. It was a horrible experience for her. He could not get the drains to go in. According to the radiologist and his assistant, he tried it from many angles and pushed and shoved. When I imagine it, I imagine her insides looking like swiss cheese when he was done (though with much smaller holes.) They said she would be very, very sore and she definitely is.

After she recouped somewhat from the procedure, she was allowed to return home. She was so, so grateful to get back to familiar surroundings and to the relative quiet of home so she could get some rest.

Now the interesting part, there is no doubt that she is very, very sore in her abdominal area because of the fruitless procedure she went through yesterday. Yet, she has not thrown up once since she returned home. She is eating more, though still not much. She is more alert. She even thinks she might be a little less yellow. I am not sure that is true, but I do know that she is not acting as sick as she was. During the entire time she was at the hospital, the only things done that were different than what she does at home are..

1. They gave her some saline intravenously.
2. They did an unsuccessful procedure on her liver.

Whatever the reason, we are glad for the respite.

She has an appointment with her oncologist on Monday to find out the best course of action to follow at this point.

Jeanine and jaundice

Those of you who are in Jeanine's ward may have noticed that Jeanine looked pretty bad on Sunday. It won't come as a surprise to you that she not only looked bad but felt bad too. She noticed that she had a yellow tinge to her skin besides not feeling well. She decided to pick Monday for her monthly blood test. Tuesday, she got a call from her doctor's staff telling her to go to the ER immediately. She was at work and after a very shortened scheduled meeting headed to the ER. She had been told that her Bilirubin levels were too high.

When Jeanine and I arrived at the ER, she was shown back to her room quickly, but spent hours waiting for anything to happen. All they seemed to do was to ask the same questions over and over, but every once in a while a new one would creep in. Things like what color is your urine and when did it change, what color are your bowel movements and when did they change, are you eating, do you have nausea, do you vomit, do you itch? By this point, anyone looking at her knew that she was jaundiced. She had a lovely undertone of yellow and the whites of her eyes were yellow. It was official, she was jaundiced. They eventually got a room for her in the main hospital and ordered a CT scan. The results... her jaundice is caused by a blockage in the liver caused by her cancer. There is nothing they can do for the jaundice.

When she saw the gastroenterologist, he said that to make absolutely sure that there was no other mitigating factor, she needed to have a MRCP which would definitively show if there was an obstruction outside of the liver. There was not. After this test, though, he told her that there might be a reason to have a very good interventional radiologist insert drains into the something right at somewhere in the liver. Can you tell I am very unclear on what he told her? Basically the only reason that he would suggest it is so that she could continue with her chemotherapy. The jaundice (or blockage) makes it impossible to use some chemo treatments on her. It would not lengthen her life or improve her life in any other way. She told him that she needed to know what the oncologist thought and what the oncologist who is at the UCLA clinic thought about it. Since the MRCP, this morning she has been sitting at the hospital bored to death and very uncomfortable. She is still there presumably waiting for the doctors to decide what the best option is.

Now a little about Jeanine's condition, she is nauseous and vomits several times a day. This is caused by the jaundice. She is not interested in eating. She spent the entire morning eating 70 calories worth of rice chex and 1/2 of a small carton of milk. Protein is not easily digestible. She has lost approximately 5 lb. in the past week. When I left her at lunch time, she had eaten a banana and a couple of spoonfuls of egg salad. She is very tired. These are all side effects of jaundice. These symptoms have only occurred in the past month. Some were more recent than that. It seems to me that the cancer might be speeding up and causing more and more issues faster and faster. The doctors have not told us this, it is my impression. She doesn't always feel bad, we have played cards, read, talked and enjoyed each others company the last couple of days too. She says that she loves distractions. It makes her think less about what is happening to her and she feels somewhat better.

This is all the news I have to report at this point.

Another update on Jeanine

Every three or four months, Jeanine goes and has a PET scan which shows what is happening with her kidney cancer. It is a much dreaded occasion because of the bad news it can bring. She did that this week and today we went to the oncologist to hear the results. They were not good this time. She was told that the cancer is now invading the left lobe of her liver. Up to this point, it has managed to stay in the right lobe. She was also told that the cancer is actively growing in many of the lymph nodes where it had been previously spotted. I saw one result that said that that particularly spot had doubled in size since June of last year. She also has new lymph nodes that have cancer in them now. These include lymph nodes in her shoulder and in the pelvis area. I'd like to say that this was a surprise to me, but it was not. She has started having a big problem with nausea in the last several weeks, she has been much more tired and she has had a lot of pain in her lower back and other areas. She also has lost a lot of weight and has little appetite. We hoped that these might be issues with the side effects of the medicine, but the doctor said that specifically the nausea and pain in her lower back were most likely caused by the cancer itself. Since she is now using an anti-nausea medicine, her nausea and her appetite is much better. Surprisingly, she has found that the medicine has also helped the pain in her pelvis. The oncologist has taken Jeanine off the Avastin she has been on and has suggested that she go see a doctor at UCLA who is in the midst of a clinical trial on a new drug for Renal Cell Carcinoma. She has agreed to at least go there for a consultation. We'll see where it goes from there. The oncologist suggested that if she waited to try the new drug until after trying the treatments that he has to offer, the experimental drug most likely would not work. This is the time to try it. There was some good news in the PET scan. There seems to be no cancer in her bones. There are spots in the lungs, but they are not growing nor do they react to the dye injected when she is having the test suggesting they are caused by some other issue, such as scarring(?). These are normally likely candidates for Renal Cell Carcinoma, but there is no cancer apparent now. Jeanine continues to work and do her callings in Church. She comes to Sunday dinner at my home. We will see what will happen from here. Prayers and calls are appreciated.

Pinterest

Do you Pinterest? I do and absolutely love it. The reason I love it, is that I can "pin" or file pictures in a category and go back and find the picture and the website I where I found the tutorial. This makes it easy to find tutorials, pictures, etc.

There has been a problem popping up recently that makes it hard to find the original web site. It comes up with a notice that says "Page not found Sorry, the page you were looking for in the blog "the website you were looking for does" not exist." I notice that it specifically happens with Blogspot blogs, but I know it is a problem with other websites also. If I realize it right away, here is what I do. I cut and paste the specific web address of the tutorial or picture or whatever in the comments portion of the post of the pin, it will take me back to the exact place I want to be. If I do not catch it, I have to cut and paste the Blogspot address in the address bar and then go searching for the original post that I wanted. It is a pain in the rear and I hope that Pinterest and Blogspot (Google) (and possibly Firefox) work it out. In the meantime, I would suggest that you copy and paste the specific web address in every thing you pin.