For Crying Out Loud

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."

Posted by Maman at 7:52 AM | Permalink | Comments (28)

Well, people say that cancer is a rollercoaster ride, and boy, are they ever right! Here I am, all dying and everything, calling Hospice, trying to decide which cemetery I should be buried in, ordering the silk for the shroud, requesting music for the funeral.

This morning I talked to a nurse at the National Cancer Institute. She is a Baha'i and a friend of Karen, whom I know from up here. (They are both in Maryland.) She is a clinical research nurse and has a string of letters after her name. She is sending me information on a clinical trial they are doing in Bethesda for pancreatic cancer. Karen asked for prayers for me, and the nurse asked questions. The NCI is looking for pancreatic cancer patients in fairly good (otherwise) health.

It sounds like it could be rough going, but with incredible results. And, I think it is exciting science. So, I am seriously considering doing it, if I qualify. I have to have a specific gene marker to do so and have a 50/50 chance at having it.

Gosh, hope feels good. Either that or the medicine that Dr. B gave me for my nerve pain is still making me quite loopy! But my hip feels much better. As a matter of fact, all of me feels pretty terrific.

I will keep you all informed as I go.

Posted by Maman at 12:36 PM | Permalink | Comments (3)

I seem to be trying to balance this with Honesty is the Best Policy. I never could get the two of them in sync. Shades of grey in a black and white world. I have been honest on my blog, but not said all the truth. Sin of omission, I guess.

Here is the rest. I haven't been feeling well for the last week or so. I really did feel fine when Mensch and Kristen were here. I am surprised at how poorly I feel and how quickly things have downturned.

I assumed that the pain was from the shingles, and Darvocet was taking care of it at first at night. I don't want to take Darvocet during the day. Remember? I have things to do. Now the pain is starting to overwhelm me during the day, too. I have a general feeling of malaise. I am going to try to see the doctor this afternoon. I don't know what she can do about it, but that is what I am going to go find out.

I have called Hospice and been accepted as a patient. That means that my PCP gave the order, saying that I have less than one year to live. I suppose that means she has seen the pathology report. She was reluctant to say this last time I saw her. They are coming to do the intake interview on Nov 17. The only reason that it will be so long is that I have put them off -- remember? I have things to do. I may call them to come earlier. I wanted Daddy and Mara to be here with me for that, but I may need them before that.

I also have an appointment for a second opinion on Nov. 21. I want to make sure I am not giving up too easily, but if I take part in any clinical trials, not only will I have to meet their criteria, the trial will have to meet mine. As I read the criteria for various clinical trials, I suspect that my low ANC will keep me out of most of them, even the one at MD Anderson (to cancer as Cleveland Clinic is to cardiac care) that involves large amounts of tumaric.

I'm sorry this is so disjointed. I'm sorry to burden you with this. It feels like a burden to me, anyway. On the other hand (I have so many other hands, it is ridiculous), I don't want you to feel that I am hiding anything from you. What I am really trying to do is deny it altogether. Not working very well.

Posted by Maman at 7:29 AM | Permalink | Comments (6)

there were two people. They happen to be mother and son, but that is less important than that they cared for and about each other. They hadn't seen each other in a long time and maybe had even felt a bit estranged from one another, having difficulty acknowledging how much they cared about each other.

It was gloomy, winter afternoon, with a fine mist surrounding everything and everyone. They were walking and talking, re-establishing the love that had lanquished and gotten buried under hurts, real and imagined.

They came to a hill. A famous hill, that many people from all over came to climb and spend the day on. Though they didn't have footwear with good grip, they also decided to tackle the hill. After all, it was just a hill, not a mountain. And it wasn't pouring rain, just misting/drizzling. Up they went. The mother had recently come off an ankle injury and was a bit tenuous about climbing. The higher they got, the more exhausted and sore she became. With her son's encouragement she got quite high up the hill, but decided together not to try for the summit. So they started down. Up had its challenges, but down actually proved to be more difficult. The ground was slick with wetness and the lack of grip of their shoes made the going treacherous. At one point, the son slipped, fell and landed on his arm. This was the same arm he had broken just 3 weeks earlier. Because he lived in a country with socialized medicine, he had no cast to protect this injury.

His mother took his good arm and together they worked their way down the hill. At first it seemed that the mother was steadying the son. As they progressed down the slope, it became evident that they were helping each other. More than once, the son caught the mother and saved her from landing on her butt. Equally, the mother caught and steadied her much larger son, a feat she didn't think possible. It wasn't the size of either of them that mattered, but that they were there for each other. The added balance of a second, temporarily stable person was enough to stablize the one losing their grip on the ground. They made it to the bottom of the hill safely. It was still a long walk home, but they made it and had a nice cup of tea together.

Why have I told you this fable? Because it is a perfect metaphor for Being There For Each Other. Being there for each other doesn't mean having to fix anything. It doesn't mean having to be strong. It doesn't mean not hurting too. It means having someone to hold, to hold on to. It means having someone who acknowledges where you are and that it hurts. It means having someone who you can cry with, who won't call you crazy, that you don't have to dress up for, either physically or metaphorically. It means having someone who can understand, someone who can climb the hill with you. Neither of you need to be strong for the other. You will need to understand that the other is also hurting.

Forgive all. Pain makes us do weird and hurtful things. The best we can do is get through this together. None of us are alone, though we will feel so alone at times.

And it's not a fable. It happened, just as recounted.

Posted by Maman at 9:24 AM | Permalink | Comments (2)

Easier Said Than Done.
I can't quite remember the rest of the song, but this is the lyric currently stuck in my head. I find it very interesting that this is how my subconscious lets me know where it is.

I thought you might like an update of how things are with me right now. Good. Yes, things are good right now. I know that seems hard to believe, but it’s true. The shingles are itchy and annoying during the day, but endurable. At night, for some reason, the pain can become quite intense, but I am able to get around that with Darvoset. I have even gotten 7 hours of sleep (last night), so I feel pretty energetic, which is a good thing.

Next weekend is the big Healthy, Wealthy & Wise Expo that I have been planning for the Women’s Center since May. We have about 80 vendors coming; a dozen authors will be there to sign and discuss their books (including such titles as “Sleeping With Your Gynecologist”, I am not making that up! Needless to say, I delegated the authors’ corner to someone else); a café; raffles and door prizes; keynote speaker and a dozen workshops. Very big deal. We are doing this instead of the food, dance, etc. fundraiser. This year we won’t make quite as much money, but it will still be a significant amount.

My and Merry’s goal was to bring the Women’s Center Endowment fund up to $100,000. It won’t happen this year, but we took it from 0 to over $46,000 in five years. Not too shabby. I think by the time we are finished this year, we should be at about $60,000.

Anyway, enough about the Women’s Center and back to me! Well, truth be told, I do think about work a lot. It means a lot to me. I know that what I do helps women, in general and individually. And that give meaning to my living, which is a good thing. It keeps me in good spirits, and that is what I want to let you know, I am doing well.

After the Expo, Heidi and I are running away to New York for the weekend. Yes, a whole weekend in the Big City. We are going to eat chocolate and see a Broadway show. I’m going to shop for yarn. (Small projects, I guess.) Go to the MOMA, or not. Maybe the Guggenheim. Walk Central Park, or even take one of the carriage rides. Have fun. Make memories.

Posted by Maman at 9:24 AM | Permalink | Comments (5)

I sure know that I want God's mercy, not His justice. And I am hoping that what is going on right now is not about His justice, because if it is, I have caused some pain and havoc in my life.

It is not enough that I get a diagnosis of terminal cancer, but now I have shingles? What the *%#@ is up with that!?!??!?!!?

Yes, I went to my primary care physcian today. I made the appointment on either Friday or Monday, can't remember, doesn't matter. I was there to ask her if she would be my doctor while I died, walk with me and all that. And, oh, by the way, I have these bug bites here at my waist, whadda yathink? Well, Stephanie, those aren't bug bites, those are shingles. Been under some stress lately?

I can hear my mother laughing, and saying, "See, I told you you were a cosmic joke." hmmmmm. Not all that funny.

Posted by Maman at 8:48 PM | Permalink | Comments (15)

Well, I have. I have been really experiencing it these last few months. I get a song snatch stuck in my head and it goes 'round and 'round. It has been sort of vaguely annoying, but then I started to pay attention to what the songs were and realized that the songs that got stuck were reflecting my feelings, or thoughts, or situation.

For example, I was shoe shopping with Heidi a few weeks ago (one of our favorite activities), when 'thin-soled, pointy-toed, high-heeled, girl-shoes' went whizzing through.

When one of my cancer buddies from the Gathering Place support group talked about his neuropathy, 'You've Lost That Loving Feeling' erupted. That was a challenging one. Poor Mike was feeling rather down and dogged with this neuropathy, and I had to stifle the urge to burst into song. (That is a phrase that comes from my childhood. My mother was inclined to do just what I am talking about! I only just now remembered that. We would be talking about something and all of a sudden, she would burst into song. I think it annoyed Popop no end, engineer that he was.)

Last weekend was absolutely gorgeous. Daddy and I totally revelled in it. It was a beautiful last-ditch autumn day and we took two walks, not just one. 'Oh What a Beautiful Morning, Oh What a Beautiful Day' from Oklahoma was running around.

Since June I have been chasing 'abdominal-digestive issues' and feeling like something was wrong, but not knowing what, and feeling quite blown-off by my oncologist. During this period, 'Slip-sliding Away' by Simon & Garfield was a constant companion.

This week the song that has been haunting me is another 60's tune, 'Why does the world go on spinning?' Actually, it has been hanging around for more than a week, but I couldn't figure out quite why. Life seemed to be fairly good. True, I was still chasing my intestines, but no one seemed terribly concerned.

Well, it turns out the tunes in my head were right. I was slip-sliding away, while my professionals said, 'Looks Good'. The world has stopped spinning for me, for a moment. Time is frozen, and I am slogging through mush each day, moment to moment. The tumor on my abdominal wall turned out to be pancreatic cancer. It's back and there is nothing they can do. I have no idea how long I have, but probably less than a year. Maybe considerably less than a year.

Anyone have a song for that?

Posted by Maman at 12:43 PM | Permalink | Comments (7)

I don't want to because I don't know what it all means, but Daddy says it isn't fair to keep you in the dark.

I had a colonoscopy Friday because I have been having 'intestinal difficulties' since May. I have been telling my oncologist, but he seemed to dismiss it so I assumed it had nothing to do with the cancer. And I don't have any evidence otherwise. I'm just setting the stage here.

Two days before the colonoscopy, a lump seemed to pop out from under my rib cage on the left side. I had mentioned to my oncologist that I had a 'poke' on the left side and again, he seemed to dismiss it so when this did pop up, I figured it wasn't cancer and so he didn't really want to hear about it. I called my primary care doctor. She thought it might be a hernia and ordered a CT scan to have a closer look. I had that Saturday.

What my primary Dr said is that the CT scan showed 'a lesion on my chest wall', and she wants to do a CT guided needle biopsy. We have not scheduled this yet. She has consulted with my oncologist, so everyone is informed at this point, but not yet in concert.

I don't really know what all of this means. I was going to wait until we had something more tangible before telling you, but the lump under my rib cage is pretty tangible. I will let you know how this progresses.

Please try not to worry. (Yeah, right! That works for me, too!) But, really, worrying doesn't change anything. It just makes you miserable in the process.

And, Rae, I promise I will never refer to you as preggers. Mara, it was meant as a joke. I hope it doesn't mean something horrible that I wasn't aware of.

Posted by Maman at 11:00 PM | Permalink | Comments (7)

and all the news that isn't:

Not a whole lot going on here, but a few changes. I want to keep everyone updated to the changes in the house and neighborhood so when you come to visit you won't feel disoriented.

Did I show a photo of the new awning? I can't remember. Not really much of a change here, but . . .

We got our new window on Friday! Doesn't it look nice? and it is all energy-efficient! It is supposed to keep all the summer heat out and let fresh air in. Well, that would have been just marvelous in June, but it is now October and in the 50's. I hope it is just as energy efficient in the other direction.

And here is how it looks from the outside. It does change the character of the house to slightly less cozy/cottage-y, but I think the improved view and ventilation will be worth it. We're even think of/exploring putting in new windows in the living room as well.

Here is how Bill's lot looks these days. No progress on the building front, but the lot is clear. It seems to be slow going. They seem to be doing most of the work on weekends, so I am surmising that this is actually a side job for a contractor.

Looks better from a distance than close-up. Rob and Carolyn's garage is in a bit of a state.

And if left fallow for too long, it will become overrun with wildlife! Actually, this cat also hangs out at our house. He was in the garden sunning himself when I got home from work on Friday. He was under the zucchini plants when I caught a glimpse of him. I thought, "Wow. what a great big Zucchini!" Then he turned around and looked at me. What a relief.

Posted by Maman at 12:43 PM | Permalink | Comments (2)