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December 30, 2006

The Report of My Death Has Been Grossly Exaggerated. --Mark Twain


I know that the news that I have been posting lately has been rather dire, but I want to reassure you that I am fine. No, make that Fine! I truly haven't felt better in a long time. As you can see from the above picture, I really am the picture of health. (My Hospice nurse even says so!) Mara and I got out hairs cut yesterday, hence the photo. And we walked to the appointment for the exercise. It was such a lovely day, as is today, again. Thank you, El Nino.

If the weather is still nice tomorrow, I will go out into the yard and do some 'Fall Clean-up' (meaning I should have already done it.) I need to cut back the mums, the raspberries, and, is this a good time to trim the roses?

I would do these things today, but we are hosting Feast. And, as usual, I have made it a potluck. Why do I do that? It is more work, but I really enjoy the community getting together for a meal. Of course, I don't want to do all the cooking, so I ask others to contribute -- hence the pot luck. But what inevitably happens is that I think of one thing I want to cook, then another, and another, just to make sure the meal will be well rounded, and the next thing you know, I've made dinner for 10. Again. This time I'm making chicken adobo, rice (to put under the chicken), salad (you have to have your green veggies) and serving (Gramma and the church ladies made it) a nut roll. Plus what Cindy will bring, plus what Donna will bring, plus what Julie will bring.

I have been working hard these last two months to catch up on the last 25 years or so of not house cleaning. It has been driving me nuts that the 'kids' have all moved out and yet I was still feeling crammed into my house! That is ridiculous! So Mara and I have been working hard to sort, pitch, package and generally, make room. We did the front room, my desk (!), some other spaces, including spots in my bedroom. Rachael joined the effort and the three of us worked on my corner of the basement. Wow! We are not quite done down there yet, but what a difference! Daddy just removed the desk and is going to paint the walls and the floor. I can't wait! And it hasn't been all work, no play, either.
welcome back.jpg
I washed all the letters and found this great space for our message center.

Here are some of our Christmas photos for those of you who weren't there. We missed you.
Christmas 1.jpg
Jaci was very sociable this year. She is turning into a person. Very nice.

Christmas 2.jpg
Of course, she was very happy Rachael was there.

Some of us enjoyed it more than others. No, it would be better to say that some of enjoyed it differently than others.

Gramma & Gene.jpg
Gramma and Uncle Gene were looking good. Daddy helped Gramma buy a new car yesterday. Oh, and we got a new car on Tuesday! I will post, but not today.

Gramma brought Grampa and he did very well. He took a nap when he first arrived. We ate dinner while he slept, then he ate (our traditional pork and farina dumplings, compliments of Uncle Thom and Aunt Barbara), then we all opened our gifts.

Mara & Mark.jpg
Aren't they cute? (I think so.)

meddling maman.jpg
I finished sewing together the Mommy Snug and Mara tried it on. I was setting them up for a 'shot', and this was actually better than the shot.

Whole gang.jpg
And, yes, Aunt Barbara was there, too. She was a bit camera shy, but Uncle Thom got her. Oh, no, that was a Mark picture. To be honest, I didn't take any of these photos. And then my camera ran out of juice.

Next post: Update on the house next door and car photos. And maybe others, too. Who knows where life will lead me?

December 27, 2006


I can tell what I need to be doing. I'd better get postin'! So, here's more . . .

mara 1.jpg

Finally, the Mommy Snug is finally finished. It wasn't that hard, but I was afraid that I would botch it when I sewed it together. I think it looks pretty nice!

Oh! And, see her burgeoning belly?

mara 2.jpg

Here you can see (Mark and Mara's hands) and some of the sleeve detail. Different buttons on the sides, too. (Okay, as the proud gramma, am I proud of my knitting or of my soon-to-be grandchild? hmmmm.)

mama and papa.jpg

Aren't they cooooot!?!



See her big belly? No?

I make fun of this whole process . . . and I haven't had this much fun in many years. I am totally loving this. I am so glad they are living with us. This! is the Best! Time! of my Life!

December 23, 2006

To Be Clear

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.

It is only fair to be clear. Last Tuesday, the Hospice nurse came and we talked for over an hour, maybe two. There were a lot of questions on my part and many answers that I knew, but didn't really want to hear.

Let me try to lay things out a little. Maybe it will help clarify my own muddled thinking. The Hospice nurse's name is Judy. We chatted for a long time. I felt like I shouldn't even be on Hospice services. I mean, how crazy is it that I have to rush home from work to get there for the Hospice nurse? She agreed to put me on services for 90 days, and then re-evaluate. She is going to come and see me every two weeks instead of every week, for now.

We discussed whether or not I should let Pelley go. In the discussion it became clear to me that his goals and mine are different. I have said that before, but I guess I have finally reconciled myself to it. He wants to treat and cure my cancer, while saying that there is nothing more he can do. Judy joked that there are docs who would go to the funeral home and give chemo if they could get away with it. I don't want that, of course. But truth be told, I don't want any more chemo since it really won't do anything for the cancer. I've said that before, and I mean it, but I had to release hope, for the last time. Hope for a cure, a reprive. I still hope to live out the rest of my life and to do it well, but I realize that I am facing the end of my days.

Some of the other things we discussed were what the end would look like. With pancreatic cancer, what usually happens is that things are pretty good until the end, then it goes downhill hard and fast. The upside of that is that the quality of life is pretty good until close to the end, so you won't be facing (and neither will I) the long, slow, painful decline that Mimi had.

I also asked what sort of signs w/she would be looking for. Basically, what she will watch for is pain, weight loss and loss of energy. So far, so good. My weight is actually back up to my pre-surgery weight. And she said I can eat anything I want! (One of my student workers gave me a box of truffles!) I am still working, though I am really grateful for having this coming week off. I have been tired this last week, but I think some of it is just emotional exhaustion. Everyone says I have such a positive attitude. I'm glad I manage to project that. Sometimes, it is more difficult on the inside. I don't mean to say that I am being false. I don't think I am, but it is still a process to accept everything.

Then Dr. Pelley called an hour later and I clarified a few more things. He was calling about the blockage that showed up in the Upper GI test. (Chronic constipation. You just wanted to know, didn'ja?) Here is the conversation I had with Dr. Pelley:
Me: I just want to clarify; my cancer has metatstisized.
Him: That is correct.
Me: So the cancer will return.
Him: That is correct.
Me: So it is just a matter of time?
Him: That is correct. I'm so sorry.
Me: It's alright, really. Do you think it is likely that it will return in the muscle again, or is it more likely to recur in an organ next time?
Him: More likely to recur in one of your organs. I think the reason it showed up in your abdominal wall is because it followed the drainage tube path. But it is in your blood system now.

I have decided, not to fire Dr. Pelley, but to let him go. There is nothing more he can do for me. I was hanging on to him and his services to see where I was and to try to predict what was coming. He can't actually do that for me and, what is the point, anyway? Judy has managed to connect me to the Hospice doctor, Dr. Katherine. I'm sure she has a last name, but I'm not sure what it is. She is coming to visit on Tuesday.

Now, here is where the hope keeps popping up. Just because it will come back doesn't mean that it is back or that it will come back right away. I know the cancer is going to kill me, and probably sooner than later, but not just now.

December 17, 2006

Sorry it took me so long

Finally, here are the most recent photos of Mara and the Belly.

And from the side.

And this one is just cute! Sorry for the funny face; I caught Mara mid-sentence. She really isn't just making a weird face.

As you can see, we are making progress here! Yes, it is possible to tell that Mara is pregnant. Even without looking real hard. By the way, can you see that new color in the dining room?

And, maybe tomorrow, I will have photos of the house next door, too. It's all sided. And the builder bought Daddy's 'plank'. I think this must be a technical term.

December 13, 2006


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.

Life is just so strange. I had the upper GI last Monday. I shared with you about that. But I didn't share everything. I had been experiencing some discomfort (read:real pain). I would eat and then feel like I had eaten rocks, distended and bloated. Miserable. I was actually looking forward to the upper GI because I wanted to get to the root of the problem. I had two nights of no sleep because it hurt so much. I went out on the sofa so I could be in a more upright position. Then I started to take the Darvacet. I didn't really want to tell you, because I didn't want to worry any of you. Even those of you who live with me. I sort of down-played the pain.

I had the test. I had to drink about a half gallon of barium (for real! 4 pints). I could see the problem on the screen, but of course, no one actually talks to me. I'm just the patient. (Future doctors in the family, take note!) But I did read some real concern from the radiologist. I called Dr. Pelley shortly after the test because I wanted to know the results. He left me a message; I chased him until he finally called me back on Wednesday. He hates delivering bad news, so I figured (correctly, I think) that he was avoiding me because of the test. What he said was that there was a blockage (slight) at the base of the stomach and otherwise unremarkable. He ordered a CT scan for Monday.

So I had the CT on Monday. I was feeling a bit better by then. Which is good. I like feeling better. I had even told Nathan that there were days when I felt like the doctors had it all wrong. Met with Dr. Pelley yesterday. Here is the deal. The tumor that was on my abdomenal wall in October is almost gone. "No evidence of metastatic disease." I had noticed that it didn't feel the same. I was wondering where it was going.

And there is no evidence of any blockage at the base of the stomach or upper small bowel. Very, very weird. None of us know what to make of it. Dr. Pelley then told me that the radiologist had called him after the upper GI, concerned that I was 2 or 3 days away from total blockage. He was expecting to find me with a large tumor sticking out of my abdoman, at the base of my sternum. If that was the case, I don't quite understand why he was avoiding me, but my guess would be that he didn't have anything to offer.

So, where am I now? Back to living my life, I guess. Looks like I will have to buy a car after all. Daddy and I are sending in our dates for pilgrimage. I'm trying to not second guess the stuff Mara and I have cleaned out of the house. It's gone. And it really was just cluttering up my life. Bad feng shui. I am going to keep going on this project; not for you guys, but for myself.

Does this mean I don't have cancer anymore? No, we still know that it has metastisized. But it doesn't seem to travel in the blood (according to Pelley yesterday. If it doesn't travel in the blood, how did it get to the abdominal wall?) and my body seems to be battling it. He was cautiously optomistic. Here is my take on it: It will still kill me, but in it's own sweet time. The next step is to watch and wait. I have another scan in February. We still have to be concerned about the intestinal blockage. I think this is my second go-round with it. I had similar symptoms in May. But we don't know what is blocking what or where it went.

He also asked me if I was doing any alternative therapy, I think trying to explain the inexplicable. Taking any vitamins or supplements. I haven't done anything out of the ordinary there. But I have had lots of family around. I think I must like the attention. I don't think that is why I got sick, but I think everyone's love and craziness has helped to keep me going. Thank you. What a journey!

December 10, 2006

Okay, It's Tomorrow.

Okay, yesterday was actually tomorrow, but we'll pretend.
This is what it looked like two days after yesterday's photos. By that I mean, the Friday after Thanksgiving.

Here is how it looks now. I was amazed by the speed of the progress, but it is all outside. They wanted to seal it up before the winter weather struck. They haven't sided it yet, so the Tyvek is sort of blowing in the wind.
From the Front

It is a bit bigger than it looks from the front.

And here is the new tree! With the farmers responsible. It is a beech tree, a tri-color European beech. It goes from pink to dark purple. It is named Sylvia. It will grow up to be a big tree, as in a big tree. Possibly even a big tree, but not terribly soon. By that I mean, it is a slow growing tree. I have always wanted a beech tree. I think they are really beautiful, majestic trees. It will need to be pruned, but not until Spring 2008.

December 8, 2006

Catching up

Forgive me for not posting for a very long time. It's not that nothing is happening or that a lot of things are happening, keeping me too busy. Somewhere in between.

Mara and I have been busy, cleaning and sorting. The front bedroom is almost unrecognizable. You can actually see the top of my desk. (!) The games now take up three shelves under the bookcases and none of my sewing stuff is under there anymore. The top of the bookcase is clear. (!) The top of my dresser is cleaned off, though there is still stuff there. But it is my stuff and just what I want there. And the corner next to my dresser is down to bare wood. (!) I even brought down 4 boxes from the attic. Stuff has left the house. Not to worry; I'm talking bags of trash. Well, wait, there were some bags/boxes that went to the Salvation Army, but it was mostly glass from Mark and Mara's wedding. And two boxes of books. More next week. I had to go back to work and Mark came so they both went to Stuebenville to visit Mark's parents. I am going to try to take one day off a week to keep working on this.

I had an upper GI and small bowel follow through. I can't blame you if you don't really want to read this part. I won't be offended if you just skip down to the next part to look at the photos. It was interesting to watch the barium travel down my system. There seemed to be a tight spot at the base of my stomach/beginning of the small intestine. I finally caught up with my oncologist (hear the slight tension in my voice?) on Wednesday. He seems totally unconcerned. I think to mullify me, he has ordered a CT scan on Monday and then I have an appointment with him on Tuesday. I will keep you posted. I will tell you this. I have decided to transfer my care to the oncologist who originally was tracking my blood changes. I think her goals are more in line with mine. I have also 'activated' Hospice care. That doesn't mean that I am going to lie down and die. I am still working almost full-time. The only reason I am not working full-time is that I want to continue to clean out the house. I have plenty of energy to work full-time. If I get the house to the point where I am happy, I will go back to 5 days a week for as long as I can. On a side note, just so you know I won't work myself to death, I have talked to Gloria (a trusted co-worker) about knowing when I should no longer be there. In her, you have someone who will watch out for me, for you.

And now for some photos . . .

I took a few and wanted to share.

Progress on the house next door. Okay, it isn't quite next door, but close enough.
Tomorrow I will post what it looks like now. This was taken the day before Thanksgiving. Or so. You will be amazed at the difference. I was. I think they have slowed down for the season, but they were here today, so they keep working on it.

Claude, Margaret and Co. came for a visit. Here is a record.
m v w.jpg
(Inadvertantly, men against the women)

Here are some photos that speak to me. See if you can figure out what they are saying.
The clematis. I have never seen it bloom in late November before. Isn't it beautiful? Amazing.

I loved the texture of this. Can you guess what this is a photo of?

Daddy and I went for an early morning walk. The frost was coating everything. Especially lovely with the angle of the early sun.

I have been knitting, but I thought endless photos of socks were getting sort of boring. I am almost finished with Mara's top. I will take a photo of that when I am. I know you just can't wait to see what it looks like!