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Feedback needed!

Dear Family, (and others who care about me),
I need some feedback about now and am feeling quite alone. It is almost 7 am and I have been up for 2+ hours. Daddy has gone to work and I am sitting in front of the computer, the monitor being my only light.

PS This whole entry has gotten much longer than I expected. I apologize in advance. I hope you can stick through the whole thing. And it is now 9 am. Took me a long time to write it. I hope it doesn't take you as long to read it.

Oh, I have a new song stuck. "It's my party, and I'll cry if I want to."

Other news before you get bogged down (blogged down?) in the meat of the message: The Expo is over! Yea! Hip Hip Horray! Success? I hope so. I think we met our goal financially, but I would have liked to have seen more people there. I mean attendees. The weather was atrocious. Yuck, sleet, rain, wind, hail, the whole nine yards. Gramma and Uncle Gene made it, though, and Uncle Gene actually won a door prize.

Through a set of happenstances, I have found (or, really, they found me) a clinical trial for pancreatic cancer. I talked to the clinical research nurse on the phone and she is sending me a packet of information, but it hasn't arrived yet. I am going to try to put down here all that I think I know about this trial and the pros and cons. Think it out, so to speak. I want to make sure that I am making a rational decision with the support of my family and loved ones. I don't want to be grasping at straws and last chances that will take away from my quality of life and time with my family. But I also don't want to say no to something that could potentially save my life.

Okay, this is what I understood the nurse to say:
This is an immunotherapy study. If I have the genetic marker they are looking for (and everyone has a 50/50 chance of having it), they would remove a substantial amount of my tumor-fighting white blood cells. These would have a gene inserted in them to identify the tumor and then be cultured to multiply. While waiting for that, they would give me chemotherapy, not to kill cancer cells, but to kill the rest of my tumor fighting white blood cells. This would be very rough and I would be hospitalized in Maryland during this procedure (2-3 weeks). Then they would reinsert the trained genes back into my blood and they, not chemo or radiation, would fight my tumor. The expected outcome would be that I would be cancer free.

Those are amazing words. I don't even know if I dare contemplate them. They are so powerful, they almost rob me of the power to think logically. And this is where the problem comes in. How can I evaluate this proposition? I don't know enough about the science. The risk is huge. It would make me very, very sick -- sicker than I have yet been. I would run the very real risk of contracting something else because my immune system would actually be gone. And it might not work at all, which would leave me very sick and with even less time left and some of what I do have wasted being even sicker than the cancer will already make me.

What else do I know, think or feel?

1. We are talking NCI here, not some fly-by-night practitioner who is going to take my money for snake oil or apricot pits. This is the government. Now, we all have our opinions about the government and trust may not be too high on the list, but I do feel that the motivation for doctor's who work at NCI is not tainted by drug company money, etc. I feel as though they are there for the science, not for the profit. And if their research leads to a major breakthrough, they get the credit, so that may be their motivation.

2. There would be no cost to me, other than getting there. My insurance company would not be billed for anything that happens as a part of this test. You, the taxpayer would foot the whole bill. I have seen in my support group people who went on clinical trials (the type offered to me by my oncologist) who have had to argue with their insurance companies over paying for it. The insurance company didn't want to pay for something they felt wouldn't be effective. Turned out the insurance company was right. It didn't work.

Now, I know that that is a very real possibility in this case as well, but . . . but what? Why do I feel better that neither I nor the insurance company will be billed? Does it make me feel that the NCI has purer motives? Is it that I feel the NCI is acknowledging that I am a guinea pig and that could have disastrous results? I don't quite know, but it does make me feel better.

3. The science interests me. I think I said earlier that if I participate in a clinical trial, it would have to be on my terms. I want to make the decision of what I will do and what I won't do. And one of the factors that goes into that decision is really, truly making an impact on furthering the knowledge about pancreatic cancer and its treatment. I even felt that way before the surgery. When Daddy and I went to the lawyer to make our wills and my advance directive, we came to the part about being an organ donor and donating to science. At that point, I said, yes I would donate my organs. I don't think anyone would want to receive my cancer-ridden organs, but if they could be used to study the disease and advance the knowledge, than 'science' is welcome to them.

This feels very cutting edge to me (or is it just quackery?) and as though the information gained would really be a stepping-stone to future successes in the field. Whereas the Tarceva trial, which was offered and I turned down, was more to see if it made any impact on pancreatic cancer, as in, "Oh this seems to have some effectiveness for colorectal cancer, let's see if it works for pancreatic too." It doesn 't seem to. (you have to scroll way down for the pancreatic results. What I don't get is, with these results, why it was approved.)

4. I would be in Bethesda, Maryland. That would be far away from Daddy. I don't like this part of it, at all. He has been my support and I really am not too happy about being that far away. And I would be gone for about a month, if I understood correctly. I'm not too sure. Rachael wouldn't be too far away (metro distance) and since Mara is coming home soon, she could come with me and keep me company and the rest of the family informed. But I don't want Daddy left out of this loop. What would be the best way to include him? He needs me and my support as much as I need his.

5. At this point, Daddy is not too on-board with this, and that is a good thing. Not because he reads the blogs, too, but because it is helping me to proceed with caution. I don't want to rush into something without looking at all the factors and having the support of my family. I sure don't want to do something that causes me to die either sooner or more painfully, only to have recriminations between the surviving family members. That is, truly, the last thing I would want. No, just put on the list of never want! Ever! (Please promise me that you won't go there. That would really break my heart. You all need each other and that type of friction could cause rifts that last for years and decades. That is not what I want my life to have been about.)

6. I am going to die anyway. If I do nothing, which is basically what my oncologist is saying is the next course, I will die within a year, maybe sooner. I have tried to research the progression of the disease and have not really found too much, but the median life expectancy for pancreatic cancer patients after resection is less than 15 months. I am at 12. I think I have done quite well, but the end is in sight.

7. If I participate in this study (assuming I am eligible), I still might die and maybe even sooner than if I don't. And the end could be even more painful, more filled with symptoms than if I don't. And I could be farther away from my family and support network.

8. On the other hand, I could live. Maybe even long enough to dance at my pending grandchild's wedding. Boy, does that sound tempting. Almost tempting enough to outweigh everything else. And that is where I worry that my judgment is being clouded by that hope alone, causing me to ignore the other factors.

9. I really don't know much since I haven't even gotten the information packet. This whole discussion is premature. But still, I would like to hear your feedback, and feelings, and ideas. I feel like that robot in the movie that I can't think of the name of who keeps saying "Input needed. Input needed."


I talked to Eric about the science of what they plan to do.
he didn't seem to think that it was a crazy idea. I know he specializes in plastics - not biology. It sounds like a genuine study with the possible desired outcomes to me.

I'm not sure I'm unbiased either- because I would be close to you, maybe Mara would be here with us too. There are risks involved- very serious risks. There is a chance for life as well. I see it most clearly as an opportunity to further the science and understanding of pancreatic cancer. I'd be proud to say you helped that - whatever the results. It is scary to have hope. No matter what you choose to do I will support your decision. You seem to be asking for advice- but this isn't a decision I feel I can help you make. I suggest you take a relaxing vacation in a peaceful place to think about it, pray on it, meditate about it [Not New York!] once you have the information.

I think Rachael's advice of prayer and meditation is excellent. I, too, think similarly to Rae - oh my goodness, hope! My baby! My baby could know its Nannie? How can I have perspective? But I also know that immunotherapy in some places (ie Johns Hopkins, I believe) is listed as one of the 'standard' treatments for cancer. I remember Nathan wanted you to look into this back at the beginning. It has been done for other cancer types before.

I would definitely be there with you (especially if I can crash with Rae!). I would keep everyone as involved as I possibly could. We could do tapes back and forth or something with Daddy, phone calls, etc. One thing to keep in mind - but NOT a decision maker! - is that I'll be fairly financially dependent on others.

Questions from my doctor friend, Andre: you can ask what are the existing evidence that this works; has it been tested in animals, in humans, how many studies?

And don't get too anxious - you may simply not have the gene marker and that will decide it for us. (that's me trying to stay sane and not have too much hope just to be let down)

I love you.


If you have this genetic marker, I would take it as a sign to proceed. Look, I prayed in the holiest spot on this green earth in this day and age for your healing, and out of the blue you are offered one spot out of an exclusive 100 to participate in a trial at the number one pancreatic cancer research institute in the world. I know it will be painful and a trial for everyone, but if you're asking for opinions from people who love you, count me as one of those that emphatically want you to proceed with this. The outcome isn't certain, but it certainly seems optimistic. In the very least, you will be advancing therapy for the cancer of the new millenium.

Mara would like to know when this trial would take place so that we can plan accordingly if you decide to accept this offer.

Stephanie -- I believe you are hearing good advice. I have heard just enough about this type of experimental therapy to be aware that it offers a genuine glimmer of hope. I am forwarding the address of your blog to Margaret and our children, Celeste & Jesse, both in their third year of medical school, for their reaction as well. -- Claude, your concerned brother

Claude, I'm glad to hear from you! I tried to call last night, but . . . it's a long story. I ran out of gas, I guess. Thank you for reading this and forwarding it. I know you took the time to consider the details. Did I miss anything? Are there any more questions this raises?

And, everyone, before we all get too transported away on the hope wave, there are very real probabilities (not possibilities) that I will be excluded. First, there is the gene marker. 50/50 is not all that good. I never win when I buy tickets for a 50/50 raffle. Then there is the 'no radilogic evidence of disease' and finally, my ANC. When I talked to the nurse, she didn't seem to think that would be a problem, but mine tends to hover between 1000 and 1200, except when I get an infection and it goes up. So, we just have to wait and see.


I feel that if you have the gene marker then you are meant to go forward. I know that you have endured alot in your life, I don't want you to be in pain!!! Nothing in life is easy as Matthew states with no pain there is no gain. You were given this opportunity for a reason........ Your family loves you and they should support your decision either way.( the only thing that I can do as an outlaw is make sure that your children and close family memebers remeber it was your decisions and no "what ifs".


Problem is, I am the what if-er. And outlaws count!


Let them disqualify you. You don't need to do it yourself. Even if you *think* you don't qualify, just keep going forward until you hear it from them.

Opinion stated.

Love, Mara

I just got an email saying the package went out in today's mail. So either tomorrow or Wednesday, I will have it. Why am I so excited when I was so turned off by Tarceva? I will be facing feeling pretty bad. It could even kill me!

I'm really glad that that was said (that the study itself could kill you). I was hesitant to bring it up; it's frightening to think about. I'm having a hard time trusting hope right now, but I'm thankful for these possibilities.

Yes, I am fully aware of that. I thought I mentioned it in my long dissertation, but I may have sort of glossed over it or obliquely referred to it. Believe me, it is a deterrent. But then, without the study, I'll be dead anyway, because the cancer will kill me. Not 'may kill me'; outcome known!

Hi Aunt Stephanie,
I find it difficult to advise on this based on my limited knowledge and experience. I think that you undrestand all the pluses and minuses very clearly. I agree that there is evidence for immunotherapy of cancer in general, I don't know about pancreatic cancer.
In some cancers immuno therapy has been proven to completely eradicate the tumor cells.
Rachel raises a very good point about further exploring the research and previous studies. Is there a placebo group, and a chance that you would be in it? You definately face the risk that you will go through all this and get no added survival. On the otherhand information from this study might offer hope for future cancer patients. Also, you have a lot of people praying for you and I believe there is power in that that we have already seen in your case. In the end I can't say what I would do, let alone what you shoud do. Pray about it and follow your instincts.

Wow. We have a truly wonderful family. I love seeing all the input from my cousins, aunts, uncles, in-laws and out-laws! :-) This is so inspiring!

Maman, I will comment on this as soon as I have time to read it. I am exhausted. good night.

I really appreciate everyone wading through this long entry and commenting. Children, other blood relatives, in-laws (even indirectly, Eric), out-laws, friends, friends of relatives, friends of friends are all welcome and valued. Thank you for taking the time and for caring. Don't worry about 'giving advice'; that's not quite what I am looking for. Note title of blog: Feedback Needed. Thank you, all. I'll keep you all posted (right here) as there are developments. And I hope you will keep feeding-back.

Hi, Maman.

This excites you when Tarceva didn't because Tarceva is about eking out a few more months of life at the expense of feeling wretched.

It's not a trade I'd make, either.

This excites you because it means trading a steady, systematic, inevitable decline for a chance at a cancer free existence.

This is a choice between two worlds, one filled with hope and one filled with the dignity of dying well.

Hope means risk for you - maybe it won't work, maybe you won't have the marker, maybe you'll be in a placebo group - but even then you might be the person who allows the research to realize how to make a pancreatic cancer vaccine. They have made a breast cancer vaccine using this method. There is hope for you - and there is hope for other people, too.

The dignity of dying well is a cold comfort to those of us who lack the high-mindedness to see past our own loss and pain. I feel guilty about burdening you with my grief, but can contain it no longer; I am not a good enough person to be selfless, to say "Oh, hospice is what she really wants; to die a good death, surrounded by loved ones, close to home, it will be so much better this way." No it fucking won't. That's bullshit. I'll be bitter if you don't at least get the check for the marker. That would send a powerful message, and the message is: "I don't love any of you enough to think it was worth taking risks to live around you."

But if you say: "I'm going to fight with every last drop of effort, because I've got a grandchild on the way, because I love my husband and children and my brothers and my unborn grandchildren, because I've got something I want to live to see." Well, even if you don't make it, even if it doesn't work, I'll respect that. And then we can find a piper who will play Amazing Grace and a list of your favorite dishes and a storyboard with pictures of you and checking you into hospice.

Dying is what you do on the day there's nothing else to do. That day isn't here yet.

My impression from reading the paper (or trying to) that Jesse sent me, was that no placebos were used, but rather two different cells types. If you look on the NCI website they have information (general) about clinical trials and how they are conducted. I think I read there that placebos are really not used. I may have misunderstood, but I think if I entered this trial I would receive some sort of treatment. And while I would like to live longer (make that: give my right arm), that is not my motivation. My motivation is to advance the knowledge. And if I live longer, well, what a bonus! By not making my motivation longer life, I am less likely to be disappointed. By making my motivation advancing knowledge, even if I die, possibly painfully, I will be satisfied.

And when all is said and done and there are no more tricks in the bag, Hospice is the way to go.

I love you dearly !!!!! Your mom is waying all the options.Yes, I also feel she should check for the marker. I feel that will be her sign.She has the right to chose the quality of the rest of her life. It's not that she is given up----her family hs been her life and she wants to make the most of it.This saddens me that your mom has to make such a difficult decision. I think I understand how she feels (Just because I'm a mom)!!!! She wants to cherish the time she with her family , not just be given a few more months with pain and suffering.
Love Nadine

Nadine, I think you captured the point of my long post in your (one) last sentence. Thank you for bringing it down to the basics and making it easy to get. You hit the nail on the head.

I don't want to lose you. I'm not ready to lose my mommy. I want more than just a few years of an mature relationship with my mother. Either way, just don't die. I love you and am greedy for you and your presence in my life an the life of my children and nieces and nephews.

I am intrigued by this new trial Mommy has posted about as it is science based and has some track record. It has good possibilities in regard to her condition and requires a blood work-up to get in or not.
Outcomes come in many forms and varieties. One has already happened in that so many of you are each responding to the hope this thing offers. Hope is real good right now for us all, including Mommy.
Each of us has a selfish reason for wanting her to live a long happy life with us. It is okay to want her here for you. Her love for all of you is boundless and so your wish for her to be here is really not one about self, rather it is about your love for her. And that is a wonderful reality for us all.
I am learning, in this past year, sometimes in a difficult way, that this cancer situation is a hard reality to accept, adjust to, or rationalize. There is a pathway which it will take for each individual and noone can clarify it until it happens. It is an emotional roller coaster which we share. All of us....often we seem so all alone in our sorrow as it happens. But we are truly united in this invasion into our home and loves and days and nights. Perhaps together we can meet it head, amd heart, on.
I have a reservation about extracting white blood cells to repalce with newly replicated ones that are enhanced. Still I am hopeful she can get into the program and safely navigate its laminar waters of hope.
We received the kit from NCI today so there will be some action soon.

Papa, I feel afraid to hope. It feels like with hope comes the very real possibility of even greater disappointment and I just don't know if I can deal with that. I am interested in the study. I want Maman to get in. But I'm not at the "I believe it" stage, as that's just too scary for me. I guess I'll have to face my emotions a bit more once I come home and that's all there is to focus on.

Right now, I am at peace - peace with leaving the Baha'i World Centre. I feel like I'm riding some high wave I feel so good. (erm, are these the pregnancy hormones?)

In a few short hours Mark and I will be meeting with the Universal House of Justice. Just the two of us and the members - in the Council Chamber! Can you believe it?!?

Thank all of you for your kind thoughts and words of encouragement. And your love. I feel it. As Daddy said, the kit came in the mail yesterday. The wheels have started to turn. I got the blood drawn and it was sent yesterday. (The blood is in the mail. I have always wanted to say that. Too bad it didn't happen a day earlier.) And I have contacted the Clinic to prepare the slides of the tumor. None of this means that I am in the trial or that I will continue with it if I am accepted. And to reiterate: I am not participating to find a cure for myself. I am donating my body to science while I am still alive. I am in this for the information. If I happen to get better, wouldn't that be nice? But I am not expecting that to be the outcome, nor am I basing my decision to participate on that outcome. The reason is that an overdose of false hope clouds decision making. It is why people buy lottery tickets, which I never do. The lottery is a tax on people who are bad at math. Don't go there. This is not about hope. That is why I wanted feedback from the rest of you. I guess the question I should have asked is: Is it alright with you if I sacrafice some of the quality of the limited time we have together in order to advance the knowledge about Pancreatic Cancer?

I think the thing about the lottery is quite a good analogy, but the lottery is spending money most anyone could spend on a better risk, and in this case you don't know how you'd be spending that "currency" at all--not to mention that the payoff is quite high and that it could make the risk a very "good bet" for both you and the research. (I'm sorry, I've probably been watching too much Texas Hold'em)

I hope and pray that the right decisions will be made clear to you and that everyone will be able to accept the outcome.

I often hesitate to post here, feeling a bit like an outsider, but I thank you for sharing, it is always inspiring for me to read not only what you have to say, but the outpourings of love from your friends and family as well.

You are really welcome to read and to post. As a matter of fact, do I have your email address? If not, can you get it to me? I wanted to talk yarn/knitting.

Here are some of my thoughts that are hopefully not too repetitive:
What is your experience in Maryland going to be like if you can and do decide to participate? The doctors may not be selling snake oil, but their greater concern is probably going to be the data and your disease, not you. How are they going to treat you? How will you be able to deal with these trials so far from your support system and your husband? I fear (I don’t pretend to know) that time spent in Maryland will be dark. Knowing vaguely what the chances of your recovery are, it is painfully likely that this will be how you spend the last of your days. I do not like this possibility. The only solid comfort that I have in this regard is the knowledge that your motivation is to advance our knowledge about pancreatic cancer, not necessarily to recover. If you only wanted to participate in the hopes of recovering, I wouldn’t buy the lotto ticket, either, especially because of the preparation that you’ve done for death. Seeing glimpses of your detachment, acceptance, spiritual trust in the situation, all of these things make me feel comfortable supporting you if you decide that it is best for you to avoid NCI and be at home with your family, friends, and Baha’i community for the time that you have remaining.
I cannot express how much I want you to be healthy and here for the long ride. And more than anything, I want to see you take a risk and win, but this situation is just not that easy (and we all know that). I trust you (and Papa) to make this decision. I just wanted to let you know that I will understand if you decide that you want to avoid NCI, and I will support you in that decision. I will also support you if you do go to NCI.

I just want to say how much I appreciate everyone weighing in on this and sharing their thoughts and feelings. It has really helped me to clarify some of my own thinking. There is no 'right' answer. There will be what I choose and the rest of the options. I will continue to include you in my thought process and keep you updated as things change. Daddy, Mara and I are going to meet with Dr. Pelley next Tuesday. I am hoping that he will have had time to collect his thoughts by then. We are working on some questions that we want to ask him. I'll keep you posted.

Next post will be about New York with Heidi.

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