For Crying Out Loud

My mother is in the final days of her disease.

We'd like to thank you, the readers of her blog, who have buoyed her spirits, commiserated with her, made jokes, left comments, prayed from far away.

You made my mothers battle easier.

When she was diagnosed with stage 3 type 4 pancreatic cancer two and a half years ago, we never imagined that we had so much more time with her.

That time, every day of it, was a blessing.

Thank you for helping my mother live more richly.

To those of you who are currently living with cancer, keep your spirits up. My mother has some advice for you, but not quite yet.

My sister Mara, a more articulate writer than I, is keeping a journal of my mother's final days on her blog, here.

We'll read comments to my mother for as long as she wants to hear them.

Continue reading "Dear friends of Stephanie" »

Posted by Nate at 4:55 PM | Permalink | Comments (10)

I passed the DPD test, which means I do have the enzyme necessary to catalyze the 5-FU and get it out of my system. We got this news on Wednesday afternoon so I took my first pill on Thursday. I am on a dose of 500 mg once daily. The desired therapeutic dose is 12 of these a day. So, as you can see, I am on a much reduced dose in the hopes that it will minimize the side effects.

Within 2 hours my nose started to run. Coincidence? Maybe. Then I had diarrhea during the night. Unheard of? Not really, but out of the ordinary. I didn't take a pill on Friday. Last night during the night my foot started to itch. This morning (after I had taken my dose) I checked and sure enough, a blister on the bottom of my right foot. That one is from the Xeloda, even if the others are not. They have also started me on a steroid, and now my face is flushed and itchy. Jude from Hospice will be here on Tuesday, so I can check with her.

And they are coming to deliver the new windows on Monday.

Posted by Maman at 1:34 PM | Permalink | Comments (2)

And yet, I realized that the fact that nothing is happening is something. I need to up-date everyone.

My plan was to shoot for working through December, into January. Then I would re-assess and make a new goal for February or March, stretching it out, cutting it into mini-goals. As I started to enter November, I still had my eye on January, but was willing to stop at Christmas. Lakeland takes the week from Christmas to New Years off, and closes. As November progressed I realized I was really pushing myself everyday, just to get to work. And I wasn't feeling very effective in what I did. I started to think about reducing my hours, but still aiming for Christmas. I got through Thanksgiving week (with only a day and a half in), thoroughly enjoyed a relaxed Thanksgiving weekend and expected to go back to work on Monday.

Monday dawned and it was clear that that was not going to happen. Same thing on Tuesday. Not much better on Wednesday, but my guilty conscience was getting to me and I was beginning to suspect that I was just malingering. Thursday I had a scheduled flu shot at Lakeland. I went to pick up my voucher. Merry and I chatted about my position and my replacement. I told her I thought I would be able to come in some days for about 4 hours to work with my replacement. We even planned for me to come into lunch the next day to meet with the ED of Hard Hatted Women. It seemed reasonable, doable.

Daddy drove me over to the area of the school where the flu shots were being given. I walked less than 100 yards from the car, into the building to get the flu shot and back out to the car. It became clear that I would not be returning to work and that I was not malingering.

So where does that leave us? I did take the blood test for the DPD (to see if I can tolerate Xeloda) on Tuesday but I have not received the outcome yet. I am no longer working. I am still losing weight. I have re-signed up with Hospice.

I wish I had more positive, hopeful things to say. I don't feel depressed, but I do have to accept what is. And this is what is.

Posted by Maman at 1:45 PM | Permalink | Comments (8)

I have gotten some feedback from last weekend's blog entry that I was not quite as clear as I might have been. I thought it was pretty obvious and in so doing, I think I skipped some parts that were not so obvious to others. I will try to make more sense of things.

As I think you know, I started feeling less well in August. I have gone back to the doctor's several times trying to find the answer. The question being, if this is not the cancer, is there something we can do about it? What I was not getting was the answer, what you are feeling is from the cancer. We can address the symptoms, but not the cause. Since I was not getting that answer, I kept asking and complaining. Hence, the CT scan and bone scan and then MRI. In the CT scan they found a mass in the area of the stomach. (I know, I know, I am repeating myself.) I asked if this mass was cancer or something else. He felt strongly that it is more of the cancer. And the reason I am having trouble eating and am losing weight. I have been losing at about the rate of 3 pounds a month. If I wanted to lose weight, well, then that would be a good rate, but I don't.

After the MRI, I called the doctor back. I am glad that I don't have cancer in the bones. I hear it is very painful. What they did find was that I have a fractured vertebrae (T12). I'm not sure how that happened. It may have been when I fell in the shower. Or not. It is from osteoporosis. Whatever showed up on the pelvic region on the bone scan didn't show up on the MRI at all, so it is dismissed.

I couldn't quite leave it alone, so I called again. I said to the onc that I felt we were still missing something because the area that was causing me the most trouble is my lower abdomen/pelvic region. Finally he said, make no mistake. That is from your disease. The CT scan is just not fine enough to find it, but it can still be causing me problems. Strictures, obstructions, etc.

The question is, What's next? The onc would like me to try Xeloda, which is an oral form of 5FU, a very well-named drug, in my book. The idea would be to reduce the effects of the cancer, purely palliative. I must say, I feel very little enthusiasm for this plan. I realize that to not do this would make the path certain, but I had a bad reaction to the 5FU. I suspect that I will have a similar reaction to the Xeloda. Frankly, the disease is bad enough. I don't need added effects of the drug on top. And I don't really think it will do much good, either. It didn't seem to do much when I took it before in intravenous form.

So, Daddy and I are taking some time on Wednesday before he starts at UH to go to the Gathering Place and consult with the medical librarian. It is so hard to find objective opinions. (Is that contradictory?) This is a hard decision to make.

Anyway, I hope that has cleared things up. If not, please ask. If you are confused, there is a good chance that someone else is too, so you would be doing a service to everyone who reads this blog to ask me to clarify. Thanks for staying with me on this. It is not always easy to write about.

Posted by Maman at 4:04 PM | Permalink | Comments (8)

I woke up when Daddy came in from work -- 7:30 am. Plenty of time to accomplish what was on my list. I'm glad he stopped at home, or I wouldn't have seen him for almost 24 hours. He took a shower and headed off to a doctor's appointment. (He's is the picture of health, thank God. No worries there.) I got up, ate, showered, the routine.

Then I went to Heinen's to order Thanksgiving dinner. That was more difficult than I thought it would be. For one thing, they don't have their brochures printed yet. I mean, come on, Thanksgiving is less than 3 weeks away! For another thing, I had to have this 10 minute conversation standing up. That is getting more and more difficult to do. (This would have been so easy to do on-line!) But the real difficulty was in letting go . . . letting go of the menu (I have to choose from what they offer), letting go of the image of good cook, hostess, etc. I realize I will probably never cook Thanksgiving dinner again. That made me sad, but I was in a hurry and didn't pause to think of it at the time.

I drove to Lakeland for my W2W workshop. I feel like such a failure in this arena. We are supposed to be focusing on Career Choices/Career Planning (The Myth). First of all, in the name of keeping peace between departments, I asked if someone from Counseling could lead this workshop. They sent two men to to a one woman's job. And they sent men to lead a women's workshop. Not the end of the world, but sort of not getting the point. Then, well, many of the women in the workshop are . . . fragile. Several are dealing with domestic violence, some dependency issues, self-esteem, basic security, isolation, to name the obvious ones. There was more pain spilled on the floor yesterday than I have seen in a while. The problem with that is that Counseling feels the Women's Center isn't actually qualified to run these sort of workshops because we 'are not counselors', which, indeed we are not. So, I am sort of afraid of the repercussions.

From there, on to the AFC (gym). I cleared out my gym locker and turned back my lock. Another moment of reality combined with grief. I can no longer walk the track. I have trouble walking all the way down to the gym. It just felt so final. And sad.

Then on to LakeWest. Lake West? you ask. As in Lake Hospitals System? Yes. I had an appointment for a two hour MRI. You might be wondering why I had an appointment for an MRI. This has not been part of the diagnostic tool box so far, why now? Last Monday I had a bone scan and a CT scan. The bone scan showed 'something' at my T12 vertebrae and on my pelvic bone. I have been having back pain, which is what triggered the bone scan in the first place. The CT scan also found a mass in the area of my stomach, which apparently wasn't there when I had my last scan in September*. That was then, this is now. Back to the MRI.

I am here to tell you that that was my last MRI. I will not do that again. I don't care why. I am not going through that again. MRIs are not in and of themselves painful. But laying on the very hard table on my sore and no longer well padded be-hind was. For three (3) hours and perfectly still. I was in tears. It was (while not a ten and not kidney stones) something I don't want to repeat. Ever.

I came home and Daddy had cleaned up the living room. Most of it migrated to the spar'oom, but it was out of sight. Because we were hosting feast. I was exhausted. Daddy was also tired from working, going to the doctor's and not being able to get back to sleep. But the community pulled together and brought refreshments. They must have enjoyed themselves because I had to ask them to leave at 10:30.

As I said, yesterday was a busy day.

Today we are going to Medina for the young Dornbrooks' birthdays. Actually, I think it is just Jaci. Garrett is staying down at OSU. Tomorrow Uncle Thom goes in for knee replacement.

And a few post scripts:

Look who came for dinner? And stayed the night.

Houston, I think we have a problem.
The funny part is that I knit the same socks (and yes, I count both the stitches and the row) with another brand of yarn with the same yardage . . . and had leftover yarn. Go figure!

I think this is why they are called Morning Glories.

We finally (after about 25 years) planted bushes out front. Don't worry. They will grow in and look beautiful in about 5 years or so. They still look just a tad scrawny at the moment.

This one is the Beauty Berry bush. Aren't these berries the most impossible color? When I first saw them, I thought someone had wired these berries to the bush.

*I do suppose I have to talk about that mass in the area of the stomach. It appears that that is what has been causing the full feeling, the loss of appetite and accompanying weight, and severe heartburn.

I'm still not really talking about either of these things very well, am I? Sorry. I know what they mean, but not just what the next step will be. What they mean of course, is that the cancer is progressing, breathing down the back of my neck, you might say. Anything we would do at this point would be strictly palliative. I do not want anyone suffering under the delusion that we can beat this beast. Anything we do will simply be to make me more comfortable. And, no, I haven't been all that comfortable for the last 3 months now. I adjust and cope as best I can, but things are going downhill.

Posted by Maman at 10:37 AM | Permalink | Comments (6)

I have probably lost all you faithful readers by my silence. I am so sorry. It has been quite busy around here, but one thing at a time. Today I am going to focus on the cancer part of what has been going on.

Continue reading "It has been way too long" »

Posted by Maman at 10:02 AM | Permalink | Comments (10)

I find myself a bit confused. I had a CT scan on Thursday. The idea was to have a new baseline after my latest surgery. Okay, I didn't have an appointment after the scan until October, so I figured that there really was not much information in the scan. I mean, after all it is just a base line. So after the scan, I went about my day. Fine.

The next day I realized that I really did want to hear something. . . anything, from my doctor. I didn't want to be ignored by my doctor. Been there, done that, didn't even like the T-shirt! That was the main reason for switching oncologists. So, late in the afternoon, I called. He called back. Not his nurse, not his secretary; he called back.

Let me try to reconstruct the conversation. I don't have it word for word, but I hope to capture the gist.

I asked if he could tell me anything from the report from the scan. He said it looked surprisingly good. I asked just what that meant. He said it showed some fluid build up in the pelvic region. I thought to myself, yes, I can feel that. It is just pressure, not pain. He asked me how I felt. I told him I felt fine. (and I do most of the time. I have occasional days when my tummy bothers me some.) Then I asked if there was anything else. He said, Not much. So I asked, Are you saying we are sort of back to no evidence of disease? (Incredulously!) His response was on the order of, sort of. Then he went on to say, 'look, your disease is not acting like pancreatic cancer. We really haven't seen anyone this far after surgery with no treatment before. It's uncharted territory' So I guess I am back to square 3.14, or wherever. The next step is to have another scan and appointment in October. It seems a long way off, doesn't it? I hope to sort of forget that I have cancer for that time.

So, I have finally come to the conclusion (again!) that I am not in control of my life. Or my dying. I just have to wait, watch and see how it all unfolds. After all, death is an inevitable part of life.

If anyone does have any ideas about what is going on, please, please comment and give your slant on things. In the meantime, I feel really good and am back to work and going about my business, making plans. Oh, and boy! am I glad Daddy and I didn't cancel our plans to go on pilgrimage in January! We may still have to, but, I'm waiting until it become really, really obvious that I can't make it before I cancel.

Posted by Maman at 6:39 PM | Permalink | Comments (3)

Today is a new day. Actually, when you think of it, everyday is a new day. But, I was not looking forward to today because today is the day I went to interview a new oncologist. I was feeling a bit gun (doctor?) shy and a bit worried that it was my lack of communication skills that had made my last "marriage" fall apart. (My former onc and I, we are no longer on speaking terms.) I harumphed around the house, emitting deep sighs every few minutes. Finally it was time to go.

Continue reading "A New Day" »

Posted by Maman at 5:24 PM | Permalink | Comments (4)

I know I have been writing about my cancer and it has been depressing. Sorry about that. Today, instead, we are going to focus on what my life is actually like.

This morning I woke up just about the time my husband got home from work. I made myself a cup of tea and we sat together in the back yard, having our breakfast in the dappled sunlight. The morning was a bit cool and I was grateful for my bathrobe. When he had finished his breakfast and we had talked our fill, we went inside, he to the bed and me to eat my breakfast and read the paper.

Continue reading "The Fabric of My Life" »

Posted by Maman at 10:31 PM | Permalink | Comments (1)

Just when I think I have hit bottom, I go and do something stupid like have surgery. Now I really feel like . . . something unmentionable. Well, okay, I don't really feel all that bad physically, but I feel worse than before the surgery. I think I am also sort of funked out.

Continue reading "What to say when you have nothing to say . . ." »

Posted by Maman at 6:55 PM | Permalink | Comments (7)

Mara has let the cat out of the bag. So, I guess I have to face up to reality and tell the rest of the story. I realize that most of the people who read this blog already know what is going on, so for the imaginary rest of you . . .

To write it in a blog makes it horribly real, but here goes. My mother always used say, "You have to deal with what is, not what ought to be." Good advice.

Continue reading "Time to Come Clean" »

Posted by Maman at 1:25 PM | Permalink | Comments (1)

I've been lying to a lot of people. For a while. It's not been a complete lie and it was only confirmed that it was a lie at the end of May.

Continue reading "I have a confession to make." »

Posted by Maman at 7:18 PM | Permalink | Comments (3)

Finally, we have a date for the Discovery Channel special on cancer. I am in it. I think I will be there for the town meet portion of it, too. I hope so. It should work out well because we are going to be in Philadelphia the day before for our neice's, Celeste, wedding. I think I am excited to share this with you!

Baby photos next time. Liam is growing! Not only has he officially passed the 6 pound mark, but he looks bigger to me, too! Mara and Mark found some smaller clothes that fit better, so he looks a little less lost in his clothes. He still tends to have a shoulder poking through his neck hole, but he is filling out. Poor baby (anyone remember Mara's babydoll by that name? We called her that because she never had any clothes on at all!) has two modes -- asleep and crying. He can do both at once, but he is always doing either one or the other. Don't get me wrong, I love this baby. But I think we will all feel better once he figures this world out. As I recall, the first six weeks are the toughest. Hang in there, Liam. It just gets better.

Posted by Maman at 10:04 AM | Permalink | Comments (5)

First, I would like to report that I am doing better, as in better living through chemistry. I no longer am going and hiding in the bedroom when there are people in the house. I am able to smile and even laugh again. I also have been looking at how I have been trying to deal with my cancer.

I know there are stages of grief and of dying. I can't remember what they are, nor have I looked into where I am in the process. I have been trying to deal with my disease head on and in a clear eyed fashion. I have come to the conclusion that that really isn't working for me at the moment, so I am going to try a new tactic. Denial. Maybe I've been here before, but it feels new to me right now.

I have been talking to my Hospice nurse and we are negotiating the waters of my release from Hospice. The challenging part is what to do next. I sort of fired my oncologist, and Daddy didn't like him anyway. I left the door open with him and I think he would take me back, but we still have different philosophies, so he doesn't feel quite right for me.

On the other hand, he has all my history and is familiar without having to read reams and reams of records. And I sort of feel like I owe him the rest of the story. This may seem sort of silly to you, but so many of his patients die due to the type of cancers he specializes in. Wouldn't it be nice for him to have a rare success story? He doesn't even know about my miraculous recovery.

Another option would be to just go with my primary care physician. I like her a lot; I feel like with both of us approach my care as a partnership. She hasn't let me down so far, but I don't think she will feel comfortable with this. We have discussed this in the past.

A third option is to start with her, and see who she recommends. The point is that I am once again at a crossroads and in the grip of uncertainty. I know, I know, we all live our lives with uncertainty, but most of us manage at most times to maintain the fascade of control. I know I have lost mine. But enough about that.

From now on, when anyone asks me how I am, I'm fine. That's my story and I'm sticking to it.

Posted by Maman at 1:37 PM | Permalink | Comments (10)

I had a dream last night. Parts of it were quite vivid and memorable. I don't quite remember how it started, but I think I was with Mendon and we had to rush off to this obscure place for an obsure reason. For another obscure reason, I left by myself on foot. That was the part of the dream that was not vivid or memorable. Now for the part that was. I was walking through a leafy neighborhood on a hilly street. There were two men and a woman arguing. The one man was shouting "Get out of my house!" over and over again. The other man was half dragging and half strangling the poor woman. I walked past them on up the hill, worrying that I should call the police. Up the hill, I came across some neighbors and asked them if they knew the people and should we call the police. (I didn't have a cell phone with me.) They didn't seem to think it was necessary as these people had been at it for years. I kept walking. And walking. As I walked, I was joined by some other people. I asked them where I was. They answered with a question of where I had been. I didn't know. They intimated that I might be suffering from senility. I felt confused, but not senile. The chaos of the first part of the trip made where I had been unimportant in a way.

I reached a crest of the hill and looked down on a valley vista. I couldn't see where the road went because of the trees and twists and turns. And the whole view seemed to twist and writhe mirage-like as I gazed at it. I was filled with an over-whelming feeling of panic because I didn't know where I was going or where the road went or what my destination was going to be, or even where I was coming from. As I stared, I became aware that though I couldn't see where the road went, I could see a segment of it. I could keep on going at least a little ways, until I came to another turn in the road, when I would have to reasses things.

Upon awakening, I realized that it was the perfect metaphor for where I am in my life right now.

Posted by Maman at 10:50 AM | Permalink | Comments (4)

I hear this question from time to time, as in, how are you, really? the answer is long and complex and very simple. Not all that great. I mean, I am doing very well physically. I am only on one medication for regularity and I will be for the duration. I am not taking anything else except for the occasional Tylenol. There is still no evidence of disease, which is a good thing, I realize. Of course, no one is looking at this point, but there are no gross signs that they should be looking, either.

Continue reading "How are you, Stephanie?" »

Posted by Maman at 12:48 PM | Permalink | Comments (9)

Yes, you have seen this title before. It is still true now, as it was then.

Well, I have passed a milestone of sorts. The median life expectancy for someone with my diagnosis and surgery is 15 months. I passed that mark 4 days ago, apparently in reasonably good health. Depending on your perspective, a good thing, but not what I had planned. I say depending on your perspective because from the perspective of two years ago, I never thought this is where I would be. I thought I would live to be 85. Here I am at 55, grateful to still be alive.

So, I find myself in the position of waiting to die, not knowing when it is going to happen, but knowing it will be sooner than later. But it looks like it might be slightly later. The Hospice doctor (Dr. Katherine) came for a visit last week. She felt for my tumor, and like me, couldn't find it. She suggested that six months from now, if my health was the same, it would be time for a CT scan to see what was going on. Six months? I didn't expect to still be alive then. In October, the docs gave me six months to a year, and told me I was already 5 months into it. No matter how you look at it, it didn't look good for next July. Or October either. Whatever, I am leaving my options open.

Daddy and I signed up for pilgrimage back when Mara first went to Haifa. We just got our dates confirmed. January, 2008. That seems so very far away. I actually have to have a note from my doctor as to my ability to travel. I wonder what she will say. Anyway, I am planning on going, understanding that plans change. How else am I to live my life? I can't just stop. After all, I'm not dead yet.

It reminds me of a joke. There is a little boy. He goes to his Mama and asks, "Mama, is it true that we come from dust and to dust we will return?" His mama replies, "Yes, dear, that is what it tells us in the Bible." He responds, "Well, there is someone either coming or going under my bed." My problem is that I don't know if I am coming or going.

Posted by Maman at 11:55 AM | Permalink | Comments (11)

Okay, this is the scenerio. I'm in my house. Along with Daddy, Mark and Mara. We live here. Okay, so far, so good. Then there is a knock on the door. (Actually, I think he rang the doorbell.)

Continue reading "Surreal" »

Posted by Maman at 5:53 PM | Permalink | Comments (7)

I know my last few posts may have been a bit confusing. First, I posted that my tumor (which could be construed as my cancer) was gone. Then, I didn't post at all about my cancer, but about the neighborhood. So, I suppose it could be surmised that things are all better or getting better.

Continue reading "To Be Clear" »

Posted by Maman at 10:36 PM | Permalink | Comments (6)

Or as Stephanie is to Cancer. I can't quite decide. I hope you are sitting down. Get comfortable. I don't want to be responsible for anyone falling over.

Continue reading "Bizarro:Life::Cancer:Stephanie" »

Posted by Maman at 9:43 AM | Permalink | Comments (10)

I'm sorry, but this entry is not going to be about New York after all.

Continue reading "Not New York" »

Posted by Maman at 4:33 PM | Permalink | Comments (3)

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.

Continue reading "Rollercoaster Ride" »

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.

Continue reading "Tout Verite N'est Pas Bon A Dire" »

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.

Continue reading "Once Upon a Time . . ." »

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.

Continue reading "Eeeeeeeasiiiiiiiiiier," »

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.

Continue reading "Mrs. Job" »

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.

Continue reading "Ever get a song stuck in your head?" »

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.

Continue reading "Daddy Says I Have to Tell" »

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

I haven't been posting so much on my blog, and now I need to talk about it. No need to worry; it isn't bad. It just is.

Mendon and I have talked a little about this. We both feel a little reluctance to post the things we think might create a firestorm. So he has carved a place in MySpace and I have been posting here. I found that I was writing some things in the comments that I didn't feel comfortable posting here. But the more I thought about it, the more I feel that it is not fair to put it 'out there' and not out here.

Continue reading "To Be Fair" »

Posted by Maman at 12:19 PM | Permalink | Comments (4)

I hate to be a wet blanket, but I have to ask What is Hope? What is Reality? Where do they intersect?

I know my doctor finds me hope-less (not a hopeless case, but not having as much hope as he thinks I should have.) I have pancreatic cancer. To quote an article I read in the Sunday magazine right after my surgery, '. . . which is nearly always fatal.' My chances of surviving to 5 years is one in 33. I have to contemplate the possibility that I won't make it that far. To do otherwise is to deny reality. If I bought one of 33 lottery tickets and started to spend my windfall before the drawing, everyone would say I was irresponsible. If I was on an airplane and the pilot came on and said that we had a 3% chance of landing -- at all, no one would question it if my thoughts turned to death. But if I mention the possibility of dying of this cancer, I get the reaction that I am being dark, depressed and pessimistic. I think all I really am looking for is an acknowledgement that things don't look so good right now.

I wake up everyday happy and amazed to be alive. I cherish each dawn and enjoy each sunset. I am taking the time to improve my relationships with my family and friends. I am glad to have the heads-up. I am not depressed, but I would be engaging in magical thinking if I didn't recognize that there is better than a good chance I won't be here in a year or two.

Posted by Maman at 5:11 PM | Permalink | Comments (8)

Daddy and I went to group last night. It was sort of a tough one for both of us. R is back in the hospital. She has not been able to take her chemo for about 3 months now and her brain tumor has grown/returned, as she feared it would. M1 has had another massive internal bleed. Her doctor told her that her abdoman is just full of cancer and it is just a matter of time -- 3 to 6 months. M2 is going in for yet another surgery (his fourth), this one for metastasis to the lungs. He lives with his mother (who must be in her 70's) who has lung cancer and is experiencing difficulties in swallowing. L had a recurrance and started a new round of treatments. And that is just in my group. Daddy had similar stories to tell, but with different people. Very little overlap.

It got me to thinking. As we turned out the light last night, I made Daddy promise that if I had a recurrance, he would call Hospice first thing, no matter what I said to the contrary. He agreed. I'm letting everyone know so that you can know that this is my wish. Even if I change my mind later. No matter what. Please make sure this happens (in the event that I have a recurrance.) I am not trying to be morbid. I don't think I am going to die anytime soon. I just want to make very sure that we are all on the same page here.

I think this request is in reaction to watching my fellow travelers' lack of action on this front. It seems very clear to me that it is time for all four of these people to be calling Hospice. They are on their ways down. They would benefit from having a travel agent. But none of them are 'ready' for it. I don't understand now how they are feeling, but I may find myself feeling that way if/when I reach their place. Please don't allow my denial/self-delusion/whatever to stop what would be a good thing. Thanks for all the love and support you have given me. I know this hasn't been easy.

Posted by Maman at 10:06 AM | Permalink | Comments (11)

I'm Alive! Wow! I don't know what else to say.

When I was diagnosed with pancreatic cancer back in October, I looked on the internet once and was so terrified of what I read on the first site that I vowed not to do that again. Then I had surgery, chemo and radiation. I was too exhausted from all that to go trolling for info. And too frightened, too. Frightened of the disease, the diagnosis, the prognosis.

After receiving the news that my first scan was good, I decided to look to see . . . well, to see more. I was really trying to predict the chance of having a recurrance because I was afraid to hope. The more I read, the more amazed I became. The median life expectancy for pancreatic cancer patients is only 6 months. And here I have made it to 9 months! (Did I say Wow!?!???) Included in that statistic are all the stages of cancer. That means even Stages I and II. Stage III is usually considered non-resectable, yet I had a doctor who took the risk and did it anyway. Why was it a risk? Well, there was a very good that I wouldn't survive the surgery. (I sort of didn't really 'hear' that when I talked to the surgeon. Selective hearing!) In other words, it is really sort of miraculous that I am still alive. I find it nothing short of amazing!
WOW!