Archive for November, 2007

Here we are in limboland

I saw my radiation oncologist this morning. I had my 3rd PET/CT scan on Monday (the first one last Dec. diagnosed my endometrial cancer recurrence, the 2nd this past July that showed improvement but that the tumor was still there). So today the dr. walks in all subdued and somber and I’m thinking “Oh shit”. To cut to the chase, the tumor size has not grown, but the metabolic activity has increased (in Dec. it was 10 something, in July it was 4 something and now it’s 7 something- I think it should be less than 2 or 3). The CT part of my “PetCat” shows the size and location of the tumor, the PET part shows the metabolic activity which is the cancer activity. Technically it can show other types of metabolic activity, like inflammation, which my dr. did bring up. He said he’s a bit perplexed by the fact that the activity increased but the size did not. But who knows. Anyway, the good news is that nothing else in my body lit up so there is no other cancer anywhere else (this is of course not a 100% accurate test, but it’s a pretty good one for early indication of disease).

He also explained that this tumor was close to the spine which presented a problem. He said he couldn’t give me as much radiation as he would have liked because of this. He said that the problem with the few treatments he could think of doing was that I could end up paralyzed. The other issue is the kidney aorta, it’s also close to that. It’s so damn frustrating because here I have an isolated disease that if it were in a different place they could just have cut it out (often with cancer mets they don’t do surgery because there’s cancer in too many places, but mine is just one tumor). He mentioned proton beam radiation but said that no one was doing it yet for my particular situation (not sure what that means exactly). The other dr. mentioned gamma knife but he said that the location near the spine could present a problem with that. This really is frustrating.

So, where does that leave me. The rad onc wants me to repeat the PET/CT in 2 months and go back to see him. Meanwhile he wants me to get other opinions, see my gyn onc for one (I have an appt. for 12/21 that was already scheduled), but also he thought it was a good time for 2nd opinions. He said he was not thrilled with Memorial these days (Sloan Kettering- he is speaking for gyn cancers not other cancers) and I said Johns Hopkins and he emphatically said no. His suggestion was Washington University in St. Louis. He said they were doing the most ground breaking gyn oncology work right now. So we’ll look into that and I think I may also want to go back to the med onc at Fox Chase and also make some appts. with some other gyn oncs in the area since I’m not so thrilled with mine (I called him Mr. Sunshine in front of my rad onc which gave him a chuckle).

I wish it were better news, but it’s not horrible news. I pretty much realized this July when the tumor hadn’t gone away that it was probably not going to be gone now. I had hoped for stability and I kind of half got that. A. asked if another ct-guided biopsy might be in order and he wanted my gyn onc (or other opinions) to decide on that.

So here we are in limboland. Better get used to it. It could have been worse. I’m trying not to get ahead of myself. One step at a time. The thought of chemo makes me sick. Hopefully we can find something better to do. At least we have some time to think. All the other times I’ve gone into treatment it’s been in crisis mode and I haven’t had the luxury of having some time to get additional opinions.


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I did this watercolor painting on Monday and my Open Studio facilitator (she doesn’t want to be called a teacher) asked me if this was a tear. I said yes, I’m drawing what I can’t do.

On Monday Phebe died, last Thursday Nicole died, and last Monday Nancy died, all from cancer or complications from cancer treatments. Phebe and Nicole were in my weekly support group at the Wellness Community. Nicole was only 40 years old with two young daughters, one Z.’s age and the other about 4 years old. She had never had a remission, but had been continually fighting her cancer since diagnosis. Her body couldn’t handle the treatments any longer and the cancer took over. Besides knowing Phebe from group she was also a friend of mine’s boss. She had pancreatic cancer, initially with a pretty good prognosis (if there is such a thing with pancreatic cancer) but the cancer came back and did so with a vengeance. I had never met Nancy, but we’d “known” each other for 4 years through the online gyn cancer support group eyesontheprize.org. Nancy and I had the same cancer, same stage, mine about a year after hers. Her cancer did not recur, but the long term side effects of her aggressive treatment left her body such a mess that ultimately she was not able to sustain life.

It’s not that there are no tears at all, they kind of well up a bit around the edges. But I find that I just don’t cry anymore. I don’t mean just for the people I have lost, but at all. Another friend in my group, who has had three different cancers and a number of recurrences, says that she doesn’t cry anymore either. She said she just eats. I said, yeah, me too.

So I decided to paint the tear, one large explosive tear, for Phebe and Nicole and Nancy and myself.

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Today is my sister Lisa’s bday. She would have been 45 today. She died 4 years ago the end of this month. Sometimes it still doesn’t seem real.

Last night my sister’s 17 year old daughter and her father came to our house, they are using our house as home base while they look at a college she’s interested in. It was late when they got here and she had been sleeping in the car. I was in another part of the house when they got here so they were already inside the house when I came walking up. As I walked up my heart skipped a beat (or ten) as I had this incredible flash of my sister’s face when I saw her, in a way that I have never seen in her before. I almost felt as if she was channeling her (sounds weird I know, but it was an intense experience). I didn’t say anything, thought it might be too weird for her. It definitely was too weird for me.

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Losing Arlyn

I lost a friend to cancer over a month ago, but I haven’t been able to write about it. I’m going to try now. She was a few years older than me and a single mom to a 16 year old daughter. We took Open Studio at the Wellness Community together and both were also on the gyn support group there.

Arlyn was a very upfront person. You knew just where she stood. She wasn’t critical (except of herself), just honest. If she liked you, she told you. It’s really nice to hear someone tell you that they like you, most of us don’t do that very often.

She loved doing art, especially playing with paint. She liked to get the paint really thick and gloppy and textural.

She was a wonderful mother who really admired her daughter. Everyone who knew Arlyn felt like they knew her daughter too. I only met her daughter twice, once when Arlyn was pretty much bedbound, and again at Arlyn’s funeral. I was impressed with both her maturity and her childlike sweetness. She came to her mom’s funeral dressed to the nines, with a gorgeous hat, purple shoes, and a dramatic coat with a big wide belt. Arlyn’s casket was a pine box and her daughter and her friends (both Arlyn’s and her daughter’s friends) painted and decoupaged the entire surface of it. There were drawings, paintings, photographs and words all over it. They filled the top with blank cut out shapes which were glued to the surface and provided the mourners with colorful markers and pens so that we all could write to Arlyn. I’ve never seen anything like it and it was just so right. Arlyn would have really loved it.

It’s been really hard losing Arlyn, not just her friendship and her tremendous spirit, but also for what we shared- being mothers of kids who still need us (of course kids still need their parents even in adulthood, but I mean kids who are still dependent on us to help them grow up). That’s why it’s been so hard to write this post (I wrote it, let it sit as a draft for weeks, deleted it and started over).

Goodbye my friend, I miss you.

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