Archive for July, 2007

Very positive

That’s how my rad onc said he felt about my PET/CT scan results this morning. The tumor has shrunk by more than half and the SUV factor that is used by the PET scan to determine how metabolically active the tumor is has dropped by more than half. He says this is all very good and he’d take these results any day. I of course would prefer there be no tumor at all. He said that the radiation may still be working, that there could be inflammation to the radiated area so that what tumor is left may not be that much of a concern. In any event we will repeat the scan in 4 months and see what happens then.

So, while I’m not dancing with NED (no evidence of disease) I am doing better than I was a few months ago. A. and I will meet with the dr. on Wednesday and we can ask more questions then. I’m glad that I don’t have to say anything to Z. and don’t have to go back into treatment right now.

Friday I go see the acupuncturist, my first time seeing one. I hope that he can provide me with some relief, this day in and day out back/hip/thigh pain for the last 6 weeks is getting pretty old. Ibuprofen helps but it causes it’s own problems, like raising my blood pressure and it’s not so good for my stomach.

One thing I didn’t mention in my previous post was that I was extra freaked out waiting for the scan results because of the behavior of the tech who did my scan. When I got there she was very friendly, she knew my case and had both written a paper on it and uploaded my scans to a website (without my name of course) to show drs. that a PET picked up cancer that the CT had missed. We chatted for a while as she did all my prep and she was smiley and friendly. So I go have my scan and she and another tech do the scan. The 2nd tech was super cheerful (as she always is at least when I’ve seen her) and she’s the one who came in after my scan to get me. After using the restroom I went back through the scan room to leave and saw the two techs looking at the screen in the room behind the glass where they sit while doing the scan. The first tech came out to escort me to the front door, handing me a voucher for some free food (nice) and explaining where to go get it. She didn’t look at me and was practically sprinting towards the door and I was walking fast to keep up with her. As she let me through the door she was still talking and I turned to face her and she still would not look at me. not just not looking me in the eyes or in the face, but she was looking down and to the side of me. It was odd and a marked change from her previous behavior. As she ran off I got this awful feeling like oh my god, she can’t look at me, she saw something awful on the scan, I’m going to die. You know, the way that you can go from 0 to 60 in .0034 seconds. When I got to my car I called A. up very upset and of course upset him too. 2 days later he was having back pains. In fact, oddly, he was having the exact same kind of pains that I’ve been having (sympathy pains?) Maybe he should go to the acupuncturist with me 🙂


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I had my PET/CT scan on Wednesday morning and am now waiting for the results. I can’t even tell you how hard it is waiting for test results. I go back and forth between sheer terror (along the lines of I’m going to die and very soon) to a weird calm (it feels kind of unreal, maybe it’s numbness). It’s exhausting. I’ve been going through this for 9 years now and I can honestly say it does not get any easier. The time between tests is easier, but the time right before getting the test until I get the test results is just as terrifying as it’s always been.

My life slows down to almost a halt. I spend all of my time at home waiting for the phone call. I know I could give the dr. my cell phone number but I don’t want to be driving or in the middle of a grocery store, or worse yet, out with Z. when I get the call. I want to be home where I can go in a room and close the door. Every time the phone rings my heart stops, the adrenaline starts pumping and my hands start to shake. Thank god for caller ID because at least I can tell who it is before I answer it, but even if it’s not the dr. I’m still a wet noodle when I answer the phone. Drs. often call at the end of the day, so the 4pm to 7pm time is the worst. After 8pm I tend to calm down because it’s rare that a dr. will call after that and I can put the adrenaline rush on hold till the next day.

A woman joined my support group at the Wellness Community last week. She has a type of cancer that requires a lot of testing and watching and waiting. She said she joined the group because she wanted to be with people who understand how hard it is to go to drs. appts. and wait for test results. She feels that her friends and family just don’t get it. I think it depends on the friends and family. I have many who are almost as anxious as I am while waiting, in particular my dh. But she’s right, it’s one of those you gotta be there to really know it kinds of things.

Hopefully I’ll know before the weekend.

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It’s been a long time since I’ve posted and lots of stuff going on. Let’s see…

A. is back at work (Yeah! for paychecks and not paying COBRA payments anymore!) After 11 months home after he was laid off it was kind of weird to have him back at work the first few weeks, but then it all became very familiar again. He’s been busy and hasn’t really worked from home (during the day) yet, but mostly he feels it’s good to be working again.

Z. is halfway into her 2nd day camp of the summer. She’s going to three day camps for 2 weeks each. She’s already done the science camp, is halfway through the nature camp and then will be doing Girl Scout day camp (with an art theme) next. She’d much rather lay around at home and watch tv all day (yeah right, like that’s going to be allowed by her mean mom aka the tv police) but I think she’s really been enjoying the experiences even if she acts all blase about it when asked. The rest of her summer will be a mixture of vacations and hanging out.

Z. had her 10 year well visit which went well. She’s had a big growth spurt this past year, jumping from 50th to 75th %tile in height since last year. She’s been very healthy (knocking vigorously on wood) and hasn’t seen the dr. since last year’s checkup, only going to the ped’s office once for a chicken pox vaccine booster when there was a little epidemic going on at her school right before I was to start radiation.

It’s all Pokemon all the time around here lately. Z. spends all her money (allowance and bday money) on Pokemon cards, action figures, stuffies, etc. She studies her giant Pokedex book and knows way too much information about all the characters and their qualities. Most of the time it’s like she’s speaking another language and I have no idea what she’s saying, but she insists on telling us everything about all of them and even tries to quiz us about them (multiple choice questions thankfully so we have can pick an answer). It’s just not something my brain can grab onto, I do a lot of vague uh huhs and head nodding.

I am still having back, hip, thigh pain (it started about a month ago). It’s not really any better, not really any worse. I started taking some ibuprofen a couple times a day about a week and a half ago and that’s helped a lot. I called my rad onc and asked to have my PET/CT scan before I see him at the end of the month and he agreed, so it’s scheduled for this coming Wednesday (I see him the following Wednesday). I had wanted to wait till after our vacation in August to get it done, but at this point I just want it over with so I can stop the niggling fears and doubts that creep in as to why I am having pain. He did say that it could be some inflammation from the radiation I have had. It feels like sciatica only down the side and front of my thigh instead of down the back. I’m glad ibuprofen takes the edge off of it (and for some of the day takes away the pain completely), I can live with low level pain, but when it gets more intense it makes it hard not only to function physically but I get very depressed as it gets me into that bad cancer head place.

I have been continuously gaining weight since my hysterectomy in 2004. I had lost 60 pounds between my first and my 2nd cancer and had kept it off for a few years. I did this by following the Zone diet, which is a balanced eating program which limits refined carbs (and often gets lumped into the Atkins low carb camp but it’s not at all the same). It worked very well for me, my weight was stable, my blood pressure good, my cholesterol and blood sugar levels good, but I ate very little food to be able to maintain this and was hungry a lot. When the 2nd cancer came I continued to follow it until I started pelvic radiation and had to go on what I call the white food diet (a low fiber/low residue diet). I still didn’t gain much weight because about halfway into the treatments I was living mainly on applesauce, rice, chicken and chicken broth, blech. But after I was done and my stomach started to feel better it was around Thanksgiving time and boy did I go nuts eating everything and anything I had been wanting to eat for years. This continued through the holidays and the week after Xmas I started chemo. Chemo is weird in that for some people they lose weight on it and for some people they gain weight on it. I’m in the 2nd camp unfortunately (well, the medical oncologist think it’s the fortunate camp to be in). So, the weight kept coming on till I had gained over 20 pounds. I tried to lose it afterwards but it wouldn’t budge more than a few pounds. Eventually I gave up and then over the last year I gained another 20+ pounds. I felt like I was on one of those runaway trains and couldn’t either jump off or get it to stop.

Sigh. I’ve had to buy new clothes 2 or 3 times. I finally accepted that I will never be that lower weight again and gave away all my clothes from that weight. I woke up one morning 3 weeks ago and said, okay enough, and began an earnest attempt to lose 20+ pounds. I’m doing the South Beach diet because it’s closest to a normal way I prefer to eat (lots of vegetables, some whole grains, low fat protein, healthy fats, no sugar or white flour). Okay, I’d rather eat more whole grains and less vegetables and I really love dessert, but it’s close. I won’t lie, it’s been a struggle, and the weight is coming off very slowly, but it’s coming off. I have a carrot dangled in front of me to help me keep going though. I have been wanting a digital slr for a long, long time. I have finally figured out which one I want and have it on my wish list at amazon.com. I have decided that when I lose 20 pounds I will get myself the camera. It’s really helped because I really want the camera, I’m able to hold to the fact that I “can’t” get the camera till I do what I said I would do, and during those really difficult moments it helps to keep me from giving up. It may take a long time to reach that goal (and maybe there will be an even better camera that’s cheaper by then) as my menopausal body just does not drop weight very easily anymore, but I already feel so much healthier and less depressed, so it’s all a good thing.

I did have to have a talk with Z. yesterday about what I am doing because when I took her and her friend out for ice cream but didn’t have any myself she told her friend that I wasn’t having any because I was on a “low cal diet”. I don’t know where she got that term from, but I didn’t want her to be thinking of what I was doing as “dieting” but as something for my health. I explained that as a grownup my body wasn’t growing anymore so all the weight that I’ve gained is not good for my health and how it’s different with kids. Oh, such treacherous territory this body stuff is with young girls. She’s already been upset because of how much she weighs compared to her friends (many of whom are 6 months to a year younger than her which makes a difference at this age). Thankfully the ped told her that she was right on track with her growth (and in fact her %tiles have come closer together, she has always been 25% lower in height than in weight and is now only 10% lower in height than weight).

Our yard is looking wonderful, A.’s been spending a lot of his free time out there working. It’s interesting to see the changes from year to year, like this summer we have more light in the backyard because we had to take down a huge dead ash tree in June. The extra sun is causing our huge pieris to get too much sun which has invited a mite infestation which has been defoliating it. And while our lacecap and regular hydrangeas are blooming beautifully all 4 of our oakleaf hydrangeas have no blooms at all. Our tomato plants are the best ever this year. We grow them from seed (except for one grape tomato plant I bought at Lowes) and this year we remembered to repot them into deep containers (in which we bury the stems way down) so they were very stocky and strong. We have a TON of green tomatoes and have started eating some cherry and grape tomatoes. We had been waiting for our first Cherokee Purple tomato to ripen and today when I went to check the squirrels had already sampled it (darn!). I think it’s time to put the bird netting around the plants, it seems to help keep the critters from taking too many (they annoy me because instead of taking one tomato and eating the whole thing they like to take one or two bites out of a lot of them and then just leave them there on the ground). Besides the grape tomato and Cherokee Purple we are growing Sungold cherry, Green Zebra, Red Currant and a new one for us Crimson Carmello. We’ve got chile peppers (poblano and anaheim), a sweet pepper called Pizza My Heart, a ground cherry tomato, and a couple of zucchini plants that I just bought from Lowes since I never got around to growing them earlier (we’ll see how they do this late).

We’ve started fundraising for the Livestrong Challenge 5k walk that the three of us will be doing together in late August. I’ve been touched by people’s generosity, thank you so much to those of you who have contributed. Z. is worried that she won’t be able to do the long walk, but I think she’ll be fine (although she will likely whine about her feet hurting through the last half of it). I’m just hoping for a slightly overcast and breezy day :-)!

Okay, this is what I get for not posting for a while, an interminably long post! Sorry (and thanks to those who’ve actually read this far!)

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