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Archive for June, 2008

Watermarks

I just took all my photos that have been posted on this blog and using a shareware program I just bought put a watermark on each of them, deleted them from each blog post and reposted them- pretty much one at a time (I could have done the watermarks in one big batch but I found that depending on how much I cropped a photo and magnified it that the watermarks sometimes needed to be different font sizes and you couldn’t change just a photo here and there in the batch mode). Sooooooo, that was a royal PITA, but it’s done now and will be easier to do individually in future postings.

So, why did I go through all this trouble? Apparently people on the internet like to steal images from blogs and then reuse them as their own (or even sell them as their own). I know that this has been happening with my blog because my stat counter software is tracking an enormous amount of image google searches to my blog. I can’t do anything about photos that have already been stolen, but at least I can prevent more of it.

Ah, the internet life!

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There’s a relatively new blog site called Mothers with Cancer that I found through my blog travels recently. I’ve been reading a few cancer blogs regularly lately, no one that I actually know and I have no idea how I found them in the first place, but one of them is a contributor to this new blog. I put a link (with their spiffy new logo) under links in my sidebar for anyone interested. Anyway, one of the things I like about this blog is that not every woman has breast cancer (nothing against breast cancer of course, but it’s just that women do get other cancers after all). I also like how there are different points of view (there are 16 contributors) and are at different points in their experiences. While I am in a couple on the ground support groups I am often one of the very few with a young child. It’s good to read about how others are dealing with cancer and raising kids.

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2nd painting

This is the 2nd painting I worked on in my studio class this past spring. It’s not finished, but it’s not really that far from being done either. The left side of the wall needs more work and I haven’t put in the grave markers in the distance in front of the old temple (among other things). I don’t know if I will get to it on my own this summer or not, we’ll see. I worked from a photograph I took myself at the Taos Pueblo in NM last summer. I was drawn to the interplay between the adobe wall and the doorway and what you see through it. I’ve never really worked from photographs before, but I think the fact that I took the photo and was there made it easier for me. I used it as a jumping off point, and didn’t feel I had to stay true to it.

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Pain

I’ve been trying to get back to “normal” life this week, but it’s been hard because my back has been in one of it’s worst hurting periods ever. I don’t know why, as time as gone on I find I understand less about why my back hurts instead of more. It’s been affecting my sleep (most nights I spend the whole night sleeping on my back on the heating pad, not a good thing but it’s the only way to get any sleep), I’ve increased my ibuprofen use to about 8 a day (way higher than usual and my blood pressure is not happy). I’ve had some good periods, yesterday wasn’t bad for most of the day (as long as I kept up a regular schedule of plenty of ibuprofen), but then I’ve had non-stop pain days also, those days are very depressing. You know those 1 to 10 pain scales that medical people ask you about, well I’ve been seeing that # 10 much too often lately. I did go to acupuncture on Monday and felt great for a number of hours, then I went home and dozed off while reading in the late afternoon so waited too long to take my ibuprofen and woke up in agony. Once it takes hold it’s harder to get rid of.

I realized that I was starting to project into the future about this pain. What happens when we go to Mexico if I am in this kind of agony, especially as we are going to have some monstrous travel days (2 flights and a 4+hour drive). I was picturing my whole summer being pretty much ruined which was really depressing since I just got my summer reprieve! Then in my support group yesterday we talked about how to get through chemo, one day, one hour, one minute at a time and I realized I needed to take my own advice and go back to thinking about my back pain that way. Just get through this moment, don’t worry about future ones. It’s hard, when I am really hurting it’s so easy to go down that abyss of despair, but I think it actually makes the pain worse.

You know I’ve been dealing with this chronic pain for almost 2 years now, you’d think I’d be better at this by now. It’s like reinventing the wheel over and over again. And as soon as the pain leaves and I feel good, it’s all “out of sight out of mind” and I forget about all my good intentions.

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Saw the oncs

I saw both my med onc and my gyn onc this week and got further clarification on my ct-results. First we saw the med onc and A. and I were both a little perplexed as to why he and his fellow didn’t seem all that excited. I asked both of them (at different times) “so this is good news, right?”, which seemed like a silly and obvious question, but they just seemed kind of blase about it. After seeing the gyn onc today, who I knew would be completely straightforward with me (his good point and his bad point, he can be blunt at times) we both felt better and understood better. This isn’t really my med oncs fault in that it took us a while after the appt. to know the right questions to ask to get the information we wanted.

Okay, so the bottom line, the tumor has not grown and is stable. This is what both drs. consider the good news. Neither of them were all that excited about the necrotic part, which is what was perplexing us. Necrotic tumor seems like a really good thing, right? Well it is, but it’s just not the part that they put their faith in, they are happier that the tumor is staying stable. The tumor is not completely necrotic, it has some dead tissue in the center of it. Why? They don’t know. Chemo kills dead cells so a tumor will shrink if it is working. Megace (a hormonal therapy) is mainly supposed to stabilize the tumor, it’s not that it can’t kill it, but that’s not necessarily how it behaves. It deprives the tumor of the hormones that feed it, which can keep it from growing, or possibly kill it. The tumor will not shrink until it completely dies. This could happen, but this hasn’t happened yet (and may not). It’s possible that the dead tissue is from the radiation treatment I had last year, or it could be some unknown reason having nothing to do with treatment (the gyn onc didn’t say that, he said it could be “whatever”). The fact that there is dead tissue in the center is a good thing, but we’ll just have to see what it means in the future.

So, the future, that hasn’t changed that much. I am still on a 3 month scan schedule, neither dr. wants to extend longer than that at least for now. So my life is still in three month blocks, continue taking the Megace, then have a scan and see if it’s still working. As my gyn onc said today, we still have chemo as our backup (oh joy!).

It’s hard living life in three month blocks. It’s hard having oncologists looking at my life in three month blocks and being happy with that. But it’s my reality, at least for now. These latest scan results restored some of my hope, which I will admit was taking a nosedive in the last three month period.

I am trying hard to deal with my other health problems. My blood sugars and my blood pressure have been going up this last month or so, not really sure why except maybe the stress and the increased pain (and ibuprofen) from my back/hip/thigh thing, which has been getting progressively worse in the last couple months. I started walking on my treadmill this week, something I haven’t done in a few years. So far it hasn’t made any difference in my readings and initially it made my back hurt worse, but I am hopeful that this will change soon. I’ve been doing 20 minute blocks, some days once a day, some days twice. I’m going fairly slow (mostly because of my back pain, as I walk and my back pain subsides a bit I increase the speed a little more and more but never walk in any real pain) but I figure something is a whole lot better than nothing. The next thing I really need to do is get into a daily stretching routine (more than the couple stretches I do before getting out of bed every morning). Give me time, exercise in any form does not come naturally (or happily) to me!

So on the way out of the gyn onc’s office today he called out to me to “enjoy your summer” and then said “and relax!” I think that I’ve lived with so much uncertainty and anxiety for so long that I don’t even realize that I’m tense a lot of the time. Little things clue me in, like being cranky and snappy at those closest to me, spending too much time on the computer, getting overwhelmed by a day with too many little things I have to do, wanting to eat too often (made worse by the fact that Megace makes you HUNGRY, but I have emotional eating issues anyway) etc. Nothing unusual, we all have our things. I have been neglecting the things that help me with this stuff, like meditation and yoga. The yoga went out the window when my back pain started, but there really no reason for me to have stopped the meditation except that like many people, it’s hard to keep a practice like that up without a concerted effort. I should probably make more of an effort.

My sleep has also been disturbed by my back/hip/thigh pain. Some nights it keeps me up, some mornings it wakes me up too early. I am a side sleeper who always liked to flip back and forth between sides and I can’t sleep on my right side (the pain side) at all (can’t even stay there for more than a few seconds). When it’s hurting, laying on the left side is also painful (not the part next to the bed, but the part that normally hurts, it’s like a throbbing gravity thing), so I end up on my back, which causes me to sleep lightly and wake up a lot (and some nights that is also a painful position). I have a great bed, believe me, but it’s been difficult not being able to find a really comfortable resting position (either in bed, on the couch or wherever). That definitely makes it hard to relax! I have always loved the exquisite feeling of sleeping late, and there are some mornings each week when I could do it, but it rarely happens anymore unless I’ve taken something like benadryl or a muscle relaxant and those don’t allow for a really restful sleep (for me anyway). Last night I had a rare almost pain free night, so of course I had to get up with the alarm at 6:45am this morning (and the pain came back as soon as I got out of bed, grrr).

So, definitely some challenges these days. But lots of good things too. Z.’s been very happy at zoo camp this week (she says she wants to be a zoologist, although she’s not exactly sure what that entails so I suggested she ask the counselors to tell her about it). She comes home every day with all kinds of facts and stories about the animals they saw that day and the various “behind the scenes” tours they get. Yesterday she told us about the panic rope that is behind the scenes in the reptile house in case “anyone is stupid enough” to get bit by a snake. She said (thankfully) it has never had to be used, but they test it regularly to make sure it works. And the weather has been great the last few days (after the intense early June heatwave we had) so we’ve had the windows open and are comfortable. Now if it never got hotter than this I’d be happy :-)) The clematis, hydrangeas and lilies are blooming in our yard and the tomato plants have flowers. There are a few green beans growing in our Aerogrow (not quite enough for even one person to eat yet, but it’s still exciting!)

So the plan is to enjoy the summer (after all it’s doctor’s orders!). My next scan won’t be until mid/late September so there’s no need to think about that anytime soon. I think the good news can finally sink in now, I’d been kind of waiting till I heard what the oncs had to say about it all (especially the 2nd onc, as the first one had us feeling a little unsettled). This has turned into a long post and every time I think I’m about to end it I start something else. So I’m just going to stop now 🙂

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Eleven! It’s been eleven years since that day you were born, the day that I can still remember so clearly. It’s so hard to believe that the 29 week preemie with the squeaky cry (that sounded a lot like a cat meowing) is the same girl. In fact these days you are mistaken for a boy an awful lot. This has been the year of the boy. You’ve had very definite ideas about your “look” which involves nothing feminine, thank you very much. It’s boys clothes, the bigger and baggier the better, and the preference is for your hair to hang into your eyes as much as possible.

This is the year where you’ve been experimenting more with your independence. Definite ideas about things, yet still young enough to be excited to tell me all about your imaginary stories (aka “the comic”). We got rid of a LOT of toys, and a LOT of books, all things you decided you had outgrown. We redid your bedroom, taking it from the 5 year old pink girl’s room to the cool preteen room. You recently finished Lower School and will be moving up to Middle School this fall. You don’t hold my hand in the parking lot or while crossing the street anymore. You’ll still be seen in public with me, but if I say something you deem “embarrassing”, even if it’s said really softly and there is no one near us for hundreds of feet, I get reprimanded. You have to wear a good strong deodorant every day and use acne products. The struggle with all that puberty has brought has been hard, you would much prefer not to be quite that grown up.

You gained confidence this year with your piano lessons. You got your Level 1 piano certification and had your first performance in front of an audience. You didn’t want to do either of them, but once done you were proud of your achievements. You started 4th grade very angry and ended it very happy.

It was the year of “the Angels”, the four 8th grade girls that you idolized all year. You have a mad crush on at least one of them and have spent hours and hours enjoying that feeling. Your favorite subjects this year were gym and science. You have pushed yourself athletically and have made great improvements. Currently you think you’d like to be a zoologist, but if not, some kind of scientist at least. The subject you probably had the best comments on in your report cards was Social Studies, but you never talk about that being something you really like.

It’s been a year of both exasperation and being so proud of you that I thought I would burst. Mostly it’s been a year of tremendous growth, both physically and emotionally. It’s been a turning point for me as I can see clearly now that my little girl is gone and you are beginning that long journey towards independence. I have had to learn to let go in many ways, yet stand close by to catch you if you fall. The safety net. It’s just the beginning, these preteen years, and I am doing the best I can to help you navigate these difficult waters, but stay out of your way and let you be yourself. It’s not easy, really not easy, and it feels like it’s just much too soon. But it’s where you are now and we are all doing the best we can, day by day, moment by moment. It’s been a growing experience for me too, learning how to appreciate whatever closeness we do have and not take the pushing away personally.

I love you Z. Happy 11th Birthday!

Love, Mom

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After surviving all that trauma with the allergic reaction to the contrast dye yesterday I took 2 benadryl before bed and slept through the night well (poor A. did not, he was up every hour, too stressed out, he needs to try my benadryl trick). So this morning I get up, shower, dress, and go downstairs and call the scan place. “Is my report ready?” “Yes.” “Can you fax it to me?” “Yes, it’s coming now.” We don’t have a dedicated phone line for our fax so have to set up the fax machine (aka our printer, scanner, copier) to receive the fax and we never remember the right setting. A. thought he had it, but it wasn’t it, so after 4 attempts we finally figured out the right setting. Sheesh, doing this when your heart is pounding already is not easy. (Oh, and the faxing continued every few minutes for about a half hour (in spite of the fact that I called the scan place and told them that they could tell the fax to stop now). But we figured out how to change the setting so that it was just a phone call and voice mail and not repeated copies of the report. )

So the report comes in and it says:

IMPRESSION:
1. Enlarged retrocaval lymph node, unchanged in size from the prior study, although now appearing necrotic.
2. Increase in the volume of pelvic free fluid.

So, this sounds like not only did the tumor not grow, but it’s actually dying! This possibility just wasn’t on my or A.’s radar, so we are thrilled! I’ll see my med onc and gyn onc next week and we’ll see what they think. The fluid thing has been increasing slightly with each scan but my med onc (who actually reads the scans himself, not just the report) wasn’t concerned about it last time. We’ll see what he says this time. Later on in the report there was something else that has never been written about in previous reports. It says “A 7mm celiac axis node is also unchanged”. I have no idea what that is about, again we’ll ask the med onc next Wed.

So this means we can book our flights for our trip to Mexico in July as I won’t be doing chemo this summer! Not only am I thrilled (as is Z., who really, really wants to go to Mexico) to be going, but I am even more thrilled not to be doing chemo.

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