making plans

It sounds like I could go out there on July 9th for a week of prescreening and if that goes well I would do 4 days of chemo. I could then come back for two weeks and return either for the start of the transplant or one more cycle of chemo. It all depends on how the chemo works. Now they are telling me that when I come out for the outpatient chemo I will need to have someone with me 24 hours a day. I have never needed anyone to accompany me to chemo. I'm not sure how I will work that out. I was having a hard enough time trying to find people to be there after the transplant. Of course there is the expense of flying people out as well.

I told several people at work today including my supervisor. They are all fine with me leaving. We are so busy at work I hate to dump all my work on them. I haven't told my staff that I will be taking 4 months off. Everyone is so stressed out these days that I'm not sure how to tell them about this.

Good news...I think

i got a call yesterday and was told that my brother is a 6/6 match. I can go ahead with the stem cell trial if I want. Initially I was terrified (well I still am a bit). I emailed my doc and he thinks this is great news. he thinks this trial should be my first choice. I talked to my brother and he is ready. He actually sounds excited. I also talked to a friend that lives in Maryland and the offer is still open for me to stay with her. Maybe this is all working out for a reason.

Here is the info on the study:

http://clinicalstudies.info.nih.gov/cgi/wais/bold032001.pl?A_04-C-0131.html@stem@cell

only the lonely

Linda wrote into Leroy's blog today and said,
"... makes me think of what a lonely experience cancer can be. We get all of the input about decisions like this, but in the end the decision is ours alone. ..... "

I'm starting to realize how many of us are out there. We had cancer...we have cancer.....even if you think that you are cured you are always wondering if it may return. I was "cured" twice, but that did not last for long. If you take a close look at my records it had most likely metastasized by the time I was originally diagnosed. I try to find a connection with others that are in similar situations, but every new story that I hear sounds worse than mine. I look for hope when I hear that others are NED or even 10 year survivors after stage IV. We can't predict how our cancers will respond to treatments or what new advances may come up. Most often the responsibility is put on us to pick the treatment or to decide to give up on treatments. I find myself avoiding my friends (some don't even know my cancer is back) so we don't have to talk about this. No one has the answers but we are expected to make the decisions. In the end I know that I'm on my own. This is the loneliest that I have ever felt.

still waiting

I guess I should be enjoying the fact that I feel physically fine. It's difficult when you have been told that by august (less than 2 months away) I should be feeling really crappy...possibly unable to work. I know my cancer is growing. I think it's unlikely that since I have been off chemo for a month that it has stopped or slowed down. I'm spending my time trying to find a trial that I may qualify for or read the research out there to try to predict which trial I would have the best chance with.

This morning I had to listen to my roommate whine. He wants to know what's going to happen to him, where will he live , how does all this impact him. I guess those are valid concerns for him. To be honest I don't really care. I am not his mother, he is an adult and he will be alive. I could not even find a response for him.

options

Today I will have my blood drawn to be tested for a possible stem cell transplant trial. My brother sent his in yesterday and we need to be a 6/6 match to be eligible. Our chances of matching are about 25%. I know that this is probably my best option for treatment, but the risks, side effects, potential complications scare me. The worst thing is that the procedure would most likely result in me going on long term disability (never to return?) from work. I'm not sure if I'm ready for that, it's almost like admitting that I'm dying. I need some more time for denial :)

What is up with the Mayo Clinic?

I called the Mayo Clinic since there is one close to me. They had their doc review my info and they told me that there was no standard treatment that they could recommend but they would refer me to their phase I office. Today(almost three weeks later) I received a call and they would like me to come down next week for an appointment. They will not give me any information on what trials they might have. She said that I need to be "fully screened" and this would require anything from a 4 hour to a three day appointment - and I will not know until I get started. She said that I would need to hand carry all my records, scans and a tumor block and that they would need to retest my blood and do another scan even though I just had these done. She also told me that it is possible that my insurance may not cover them if I just had them done and they would expect me to pay. If this wasn't the Mayo Clinic I would think this was a scam.

The good news is that the hospital decided to release a tumor block to NCI , so they can test me for the gene therapy trial. THis took more than one week of aggravation. Give me my damn tumor!!

One step closer to a trial

I made the first cut for one of the trials. This is a good thing since time seems to be ticking by quickly. My blood passed the test and now they need a tumor block to see if my cancer overexpresses P53. They actually divide your tumors up into blocks and keep them forever. Luckily the nurse at my clinic is helping me gather all this stuff. It not as easy as you would think to get your records and your own tumor. It sounds like we need to fax some paperwork back forth today before the lab with release the tumor block. Once the tumor arrives in Bethesda it will take about 2 weeks to test it. I'm still working o some other trial oprions as a back up or if this wone does not give me a positive response.

My darling daughter graduated last night!!! There is another graduation ceremony today at her other school today. I thought I would have been long done with cancer by the time this day came. So much for strating my new life now that she is an adult.