For Crying Out Loud

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.

Dustin came with me, thank goodness. We sort of keep each other focused. We both talked about my history and what we were not pleased with about my former oncologist. And the new one listened! And asked questions! And listened some more! And offered me printouts of my CT reports, my surgery report and my pathology report! Wow, what a difference. We discussed some options, and he was the first to admit that there really were no good options for me, though there are two chemos available. One is a drug in combination with Gemzar, which has already been ruled out because it lowers my white blood cell count to dangerous levels, and the other is an oral form of 5FU. I built up a toxicity to that the first time because I apparently lack the enzyme (TCP? TPT?) necessary to metabolize it. So I am not a good candidate for either.

We talked about what I want out of this process. I told him I understood I was going to die and most likely it would be from pancreatic cancer and sooner rather than later. I am okay with that. I'm not fighting it. I do want to be kept appraised of the progress of the disease and what options I may have.

We discussed my most recent surgery. I told him that I would have liked to have had an opportunity to discuss it either with him or the former onc (not an option; our trust levels were too low on both sides) before I had it. Was it time for it? Was it as step forward or a step back? He agreed that that would have been a useful discussion to have had. I didn't feel rushed into this surgery, but I might have waited if I had been able to have that discussion. The danger that I face is bowel obstruction. That was why they did the surgery (to avoid it) and why they might do more surgery. I did raise the question of how many times we were going to go in and untangle things.

Anyway, Dustin and I both feel more comfortable working with this guy. He is 15 minutes away and I don't have to pay for parking. He listens and asks questions. He understands that I am not looking to be cured, but informed. I hope it works out as well as I think it could.

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

Yes, I have been "recovering from surgery", but I have been productive with my time. See?

Yes, that is our Baby Liam the Lima Bean. So different than his first photos. Isn't he growing up to be such a handsome boy?

Posted by Maman at 12:58 PM | Permalink

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.

I leisurly read the paper as I was in no hurry. I checked the Dornbrook blogs and my email. My mother in law was going to come over and pick cherries off our tree so they don't go to waste, but I had time. Of course, when I got in the shower, she and my brother in law arrived. They had brought lemon poppy seed muffins and a beautiful white impatiant.

When I got outside, they had picked enough cherries for at least 2 pies, so, of course, Gramma started weeding my little flower bed. I figured if no one was going to stop her at 85 from doing a little weeding, they wouldn't say too much to me if I joined her. (I caught some flak for doing it the day I got home from the hospital.) We did a pretty good job on that bed and actually started on the herb bed as well. Mara got me to stop because Gramma was going to go at it as long as I was, so we all sat down with tall glasses of cold water.

Gramma decided that we should be eating lunch so sent Gene off to Arby's for roast beef sandwiches for all. We sat in the sun with a light breeze cooling us off, chatting about the mundane things of life. Mom reported that her friend Claire had been admitted to Hospice. Mom had been out to visit her in California right after Grampa died. Mom returned in time for Father's Day with all the boys.

Dusty got up after not enough sleep and joined us. We had been sitting there quite a while by now and we sat there some more. I have the sun burn to show for it.

By now Gramma and Gene decided to go home and pit their cherries and Dustin went back to bed for the rest of his "night". Mara went off to do some errands, handing Little Liam off to Mark. They were fine at first, but then Liam the Lima Bean took umbridge at something Daddy said or did. He walked him outside, which usually calms the little one down, but he was not to be consoled today. I followed and fairly snatched the baby from his father, because I am that kind of a grandmother (terrible and possive), being careful not to lift him since, after all, I am less than a week post op. He finally settled down sucking on my little finger.

Mara returned, Mark left for school and Liam, Mara and I hung out in the living room while Daddy still slept. As we approached 6 pm, I realized that for dinner to happen, I'd better move. I just made a simple chicken and veggie soup. Dusty got up, took a shower and made some toast.

After dinner, we all watched Hopscotch with Walter Matthau. Good movie. Just as the movie was ending, Gramma called to let us know that Claire had passed away. I had talked to her in the beginning of the month before Gramma returned to Cleveland. She sounded good. But that is it way it goes.

Dustin left for work, I am writing this entry, Mara and Liam are getting ready for bed, Mark just pulled in the driveway. The day is winding down, we are all getting ready for bed. The house will be quiet in a few minutes, to arouse and start all over again tomorrow morning. Not a special day, actually an ordinary day. And special in its very ordinariness.

PS Did I tell you that Liam laughed at me yesterday? Yes, he did. Mara had him over his shoulder and I was making fish faces at him. He was following me closely. It is sort of a hit or miss thing with him, so when he does follow you, it is really special. Anyway, one of the faces must have struck him as quite amusing as he gave a big smile with a bit of an aspiration. His first laugh! I was so thrilled!

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.

Here is what I thought: I thought that the tumor was cylindrical in nature, so 2 dimensions came to a pineapple shape.
Here is what was: The tumor was more like an old fashion diaper - not much thickness, but not quite 2 dimentional. More like a layer of mold on a container of yogurt.

Here is another thing I thought: That, possibly (hope springs eternal), Whatever was growing on my ovary might a) not be cancerous . . . after all, women get those things all the time! Maybe it was just my time. (Yeah, right. What was I smoking?) or b) was an isolated return and when we removed it, it would be a set back for the cancer. The cancer would have to start all over again.
Here is what was: Yes, of course the tumor was the cancerous. Yes, of course it was the pancreatic cancer. What else could it have been? And, no, it is not an isolated return. It was the biggest return. There are other spots. I know where two of them are, when I talk to the dr next week, I'll find out more. I know I have one on my diaphram and one on my sigmoid colon. I suspect that if I have them that far apart, I have more in between.

And another thing I hoped for: I hoped that after the surgery, I would bounce back. I mean, after that first monster surgery, this would be a cake walk, right? Well, yes and no. I mean it really is no compairison to the first one, but it is still surgery and I don't feel terrific. I know, it has been less than a week. Aren't I being a bit hard on myself? Yes, I am. I also am wasting precious and scarce sick leave recovering from a surgery that didn't really do what I had hoped. It won't leave me much time to die. I'd better start making a list. (Inside humor)
What I am afraid might be the case: (and I have nothing but my awake-at-3-am times to base this on) That I have spent my precious health on a surgery that is going to start me on my downward spiral, hastening the process instead of delaying it. Let us hope I am wrong.

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.

Take a grapefruit . . . no, make that two. Put them end to end. Contemplate. Set them aside. Now take a mango. . . a big one. Roll it around in you hands, smell it. Set it aside. Next, let's get a papaya, not too big. They come in different varieties. Heft it in your hands. Feel it's weight. Put that down. Next, carefully, pick up a nice ripe pineapple. Look for a fairly large one. Careful! They're prickly. Doesn't it smell lovely? I love fresh pineapple. Now imagine it without its leaves on top. Feel the weight. Set the pineapple next to all the other fruit. Look at all of them together. Start cutting up the fruit for a salad.

No, actually, that was an exercise to help me understand the size of this "thing" that is growing in my abdominal cavity. I saw the surgeon last Tuesday and my surgery is scheduled for next Thursday. I can't wait and I am dreading it, both at the same time.

This surgery is not about "getting it all" or curing me. The cancer has returned, as I was told it would. It has been in my bloodstream and has found a home in my ovary. This mass has grown quite quickly. What we are doing here is making me more comfortable. It will return later, and probably in a more deadly place. Ovaries don't kill.

I do feel a bit as though this cancer thing is playing a morbid game of cat and mouse with me. First it showed up in the tail of my pancreas, which makes it more difficult to diagnose. Then it shows up in muscle tissue, where it doesn't belong, so was ignored because if it is in muscle tissue, it can't be adenomacarcinoma. Next, it turns up in my ovaries, again, not the usual place to look. Now, the alternatives are lungs and liver. Those places do kill, so I am grateful it hasn't sprung up there yet, but I still feel a bit toyed with.

I am doing quite well, actually. I feel pretty good most of the time. I am still working full-time and will up until my surgery. I was having some bouts of nausea, and some abdominal pain. They both come and go. But knowing that I am not crazy and that there is actually something there and that it will be taken care of next week, makes me feel better. I can dismiss the minor discomforts for now. (Ask me next week how I feel about it. I suspect the after effects of the surgery will be worse than how I feel now.)

I will try to write again before I go in for surgery, to keep everyone posted, but if you don't hear from me, you will know where I am. (Holding Liam, most likely. As Mara said, I am storing him up against future deprivation.)

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.

Whenever anyone asked me how I was, I replied, "Fine!" or "Great!" or "Teriffic!" or "Fantastic!" Always with an exclaimation point and a big smile. And it wasn't a total lie! I mean, I felt pretty good. I still do. And I hope to continue to feel pretty good. But, I am not fine.

I have had a growing suspicion that there was something growing in my pelvic region since the beginning of March. It seemed very centrally located, and, frankly, I had no idea what it could be. At first it was pretty small, and I wasn't sure it was even anything at all. Then it seemed as though my bladder was full. By the end of March I was pretty sure something was not quite normal.

Mid-April I mentioned it to my oncologist. He poked my tummy and said, "See you in July." He didn't order a scan for either April or July. I was feeling very optomistic. He had said that if I didn't show any further sign of disease in four years, he would consider me cured. (I didn't ask him what the odds were on that.) Since I was feeling so optomistic, I made an appointment with my gyn.

You may ask how those two things are connected. I'll tell you. Back in October after my lump on my ribcage, I asked my onc if I should bother with a pap. He said, no, probably figuring I would be dead of pancreatic cancer well before either breast or cervical cancer, if discovered, would get me. Well, I figured that if I was, indeed, going to live, I should be checked. Plus I have been with my gyn for 28 years. She has seen me through 4 pregnancies. We have a good relationship. And she is the one who started me on the journey which led to my diagnosis. If it weren't for her, I might not be here today. I wanted to thank her for that.

In between my onc appointment and my gyn appointment, I went to see my primary care doc. I needed to have some prescriptions filled and since they had come from Hospice, she wanted to see me first. No problem. I don't think I actually mentioned my belly issue because it really wasn't bothering me and my onc had dismissed it. She did find that I had a bladder infection (without the usual painful symptoms), so I thought that maybe that was what was causing the feeling of fullness.

I had my gyn appointment May 24th. No rush when I made the appointment, it was just for a check-up. As the time got closer, I found myself looking forward to it. Now, I like my gyn, but I don't usually look forward to seeing her. But this thing was growing and starting to cause some discomfort. Pressure, you know, like the pressure you feel with childbirth? It comes and goes, but you get the picture.

My gyn was glad to see me and we caught up. I hadn't seen her since I had been diagnosed so I told her about that. She was a surprised that my disease was so advanced and that I was doing so well. Then she did her exam. She confirmed that there was a "something" there. She said it was not uterus and seemed to be about the size of a large grapefruit. She had me schedule a CT scan and an ultrasound. Those were done on Thursday.

The upshot is I have a "loculated mass" 14cm by 16cm. It seems to be coming from my right ovary and it completely encompasses my left one as well. We really don't know what this is. It could be several things. It could be the pancreatic cancer embedded and growing in the ovary, or, I suppose, just one of those cyst-things that some women get.

The next thing is to meet with the gynocological oncologist. That is happening next Tuesday. The fact that it is a gynocolgical oncologist should give me a hint, though. I had a CA125 test for ovarian cancer and, though it came back elevated (58), it really isn't in the ovarian cancer range. I will probably have to have surgery to remove this thing, but I don't know anything yet.

In the meantime, I usually feel pretty good. Every now and then, it gets pretty uncomfortable. I feel pretty optomistic, though. Even if it is the pancreatic cancer returned in my ovary (it has been know to happen before, and we have already seen that my cancer doesn't follow the 'road most taken'), that is not something that will kill me, unless we let it get to the point of blocking my bowels. On the other hand, it would confirm that the pancreatic cancer is still floating around my blood system and will, one day, lodge somewhere that might be deadly.

In the meantime, what am I doing for fun? Tomorrow the whole family will be walking in a fundraiser for the Gathering Place.

And I dyed my hair purple.

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