anticipation

I haven't written in awhile because I have busy trying to finish things up at work and home. I have most of the legal documents done, I just need to finish setting up my trust. The more I learn about this trial, the more I wonder if I will really make it to transplant. I will be going in this week for a brain mri. If I have brain mets then I'm out. I hope that doesn't happen because then I'm back at square 1. I am scheduled for appointments in Maryland from July 10th - 17th. If all of those go well then I can sign on to the trial.

My cover has now been blown at work. Everyone knows that I have cancer. So much for privacy. There is no way to plan for such a long leave without the word getting out. Of course the word does get a little distorted. One woman approached me yesterday and to tell me how sorry she was that my cancer was persisting. Then she said " so it sounds like you are going to take time off to travel before the end" . I hadn't thought of doing that yet.

still trying to plan

I am trying plan for this transplant, but everytime I talk to them the details seem to change. There are so may variables that may alter the dates or length of treatment. It may not be an option to stay at my friends house after the transplant, so I am looking in hotels etc. It's so expensive out there (even with the patient discounts) . It looks like I need to come up with an extra $20,000 to make it through this. I know that when you look at the big picture that isn't a lot of money. I am fortunate that the initial medical costs are covered, but when you are already tapped it's difficult imagine where that money could come from.

Contact your Senator regarding the GINA act

The Genetic Information Nondiscrimination Act, or GINA, (S.358) is on the verge of passing after 12 long years! The House bill (H.R.493) passed 420-3 on April 25 and the Senate bill has been reported out of committee. We just need the full Senate to vote on the bill to get it to the President’s desk! Tell your senators to push for GINA to come to the floor for a vote! .
You can e-mail this to your senator by looking up their e-mail address on their website by following this link:

http://www.senate.gov/general/contact_information/senators_cfm.cfm

(once you go to their website, click on the contact option on the menu).



Sample Letter (feel free to personalize this)

Dear Senator ____,

I am am sending this letter in support of the Genetic Information Nondiscrimination Act, or GINA, (S.358). I am urging your support for this legislation to come to the floor and pass. All people carry high risk for some disease. This bill will help protect you, your relatives, your friends, and all Americans from health and employment discrimination based on a genetic test result or predisposition to disease.

It is astounding that this bill, which the Senate has passed unanimously in the past two years, has not yet passed in the 110th congress. The House passed this important bill by a vote of 420-3 on April 25, 2007. More than 140 national patient groups, professional societies, academic institutions, research centers, companies, women’s organizations, labor organizations, and the millions of Americans endorse this legislation. The President has given his endorsement of this legislation. Those who support this bill represent every sector of society in this nation, and we urge passage of GINA.

This bill protects all Americans from the misuse of genetic information in employment and health insurance decisions. With these protections in place, Americans will be able to use genetics in medicine without fear of misuse of their genetic information.

Thank you for your time.

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.

Waiting for.........?

I guess I'm waiting to be matched with a trial to find some wonder cure for my cancer. I have heard back from Mayo and the U and they will not see me for a consult or second opinion. They both think I have exhausted all treatments and that my only hope is a phase I trial. I don't fully agree with that, but who would want to take on a new patient with such a grim prognosis.

There are 4 trials in Bethesda that I am trying to get into. I'm waiting for two more tubes to fill with blood and my clinic needs to send records and tumor blocks out there to be evaluated. My doc says that I shouldn't wait for more than 3 or 4 weeks before starting a treatment. I hope something turns up before then.

what they don't talk to you about....

I am surprised at the things that my doctor (or anyone in my clinic) have never discussed with me in the more than two years that I have been doing this Cancer thing. I have seen two different postings on the wall for support groups (one for newly diagnossed and one for metastatic) but no one has ever recommended then to me, asked if I had a support group or wanted to get hooked up with one. They like to ask the question " coping" ? yes, it's a one work question to which I always give a one word answer "good or fine" . The nurses type in the computer after they ask. Recently the docs new nurse asked the question and when I replied "fine" said "that's an improvement over last time" . I didn't even ask what that meant. When I asked directly how the disease would progress if we didn't find something thaht worked, the doc said in 6 months (aug 07) you will be feeling really bad and by the end of the year you will be dead. Interesting....they have never mentioned hospice, end of life planning - directives, wills etc...... I wonder when I will hear about that??