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Archive for June, 2009

camping

I know a lot of people who love to go camping. I am not one of them, and except for maybe when I was a teenager, never really have been. I want those luxurious camp grounds with real rooms with comfortable beds and private bathrooms thank you very much. I think they are called hotels. So, Z. has not had a childhood of camping experiences I’m afraid. Since she hates bugs this isn’t too terrible. This summer though she’ll get her fill. This week she has been at a nature camp, a day camp except that last night they had a camping overnight. Tiny tents on the ground, lots of bugs and s’mores I’m guessing (I’ll pick her up later this afternoon and will get the scoop then). A. and I went out to dinner and drank wine and talked about how nice it was that Z. got to go camping and we go to go out to dinner 🙂

In July she goes to overnight camp for 2 weeks, cabins in the woods with actual beds, but still very much outdoorsy and camping like. After two weeks of that she will probably appreciate her own bed and lack of bugs in it a lot more. I really enjoyed my camp experiences like this when I was a kid and hope that she will too. These are her first overnight camp experiences, she’s been going to day camps of various types for years.

The only thing that creeps me (and her) out is the ticks/Lyme disease thing. They do tick checks at her camp this week and I check her ears and the back of her head when she gets home. Then she jumps in the shower and checks the private places. So far so good. We have been spraying her with bug spray in the morning (the Cutter Advanced that has Picaridin in it, not Deet- so far so good) and I sent her off with it for the overnight. The two week overnight camp is going to be a lot harder as she’s going to have to be responsible for doing all this herself.

It will definitely be weird having her gone for 2 whole weeks, but I am excited for her as I think she will have a blast in spite of the bugs. A. and I are still working on taking a few days vacation ourselves while she is away, but we’ve dilly dallied so long that airfares are skyrocketing so we’re not sure what to do at the moment. We’ll figure it out, but wherever we go it won’t be a hot humid place with lots of bugs!

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Gilda Radner’s character Roseanne Roseannadanna used to say “It just goes to show you, it’s always something” and that is just so true! So my salivary gland thing has been holding up pretty well for the last week and I got through the bar mitzvah fine (I did avoid the salad and veggie dips). So that means my back has to act up! It’s been really awful, I mean like closer to the 10 on the pain scale all the time when I am normally below a 5. Ugh, I’ve pretty much had it with it. I’ve been trying the two types of muscle relaxants I have (one works better but makes it hard for me to wake up the next day, the other I can take during the day as it doesn’t make me very groggy but it doesn’t work as well) and have even tried half tablets of morphine during the day a couple of times (including today). But nothing is really helping. A. does a short massage at night before I go to sleep and that coupled with the meds and the heating pad have calmed the bugger down enough to sleep thankfully.

But I am tired of it always being something and in spite of it I was determined to do some things today. It’s Father’s Day which has been pretty quiet because A. just wanted a day to putter around the house and garden. So Z. and I gave him his presents and had breakfast together (late, I got up late because of the meds I took last night). I did laundry (whoopee!), helped Z. figure out how to overwrite some nasty code she put into her DS by mistake which made her Pokemon Pearl trainers have nasty names (she really learned her lesson on that one!), A. and I got the salad seeds started in our Aerogarden (using their kit that allows for using your own seeds), and Z. and I made A. a blueberry cobbler (his request was for a blueberry dessert). Then I performed difficult surgery on an old Pokemon Gold Game Boy color game that she had gotten from a friend that didn’t save. It required changing the battery, not as easy as it sounds as the first obstacle was getting the oddly shaped screw out (managed it with one of my many pairs of tweezers, luckily I had a selection) and then gently breaking the soldered seals on the battery without breaking the delicate contacts, taking out the old battery, putting in the new with electrical tape holding it (and not touching the other things in the circuit board and getting it back together. Today I am Z.’s video game hero LOL! Oh, and I called my father and wished him a Happy Father’s Day!

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A really nice thing in my life right now is that one of my orchids is finally blooming! I have talked about my orchids on this blog before as I have had just a horrible time getting any of them to bloom. I usually end up buying a new one so I have one blooming! I’ve tried to figure out why they won’t bloom and the only thing I can think of is they don’t like the light in the dining room windows. I was at the point where I was ready to give up, either throw them all out or move them up to the third floor and see if they liked the light better up there. Of course I procrastinated and didn’t do anything and one day I noticed a stem growing and sure enough it eventually got some blooms on it! So it’s blooming right now! Z. and I also had bought some small, somewhat pathetic orchids in the clearance rack outdoors at Home Depot for $3 a piece. They were blooming when we got them but the blooms were papery thin and dropped off quickly. However both hers and mine have new buds on the stem so should have new blooms very soon. I’m feeling lucky with two orchids deigning to give me flowers. Now if only the other 4 would follow suit! Also both my sunrise cacti (similar to Christmas cactus only they don’t bloom in the winter) bloomed recently, but are on their way out now.

It’s nice outside today so we’ll grill dinner and eat outside on the dining room porch. I’ll bring out my vibrating lumbar pillow and hopefully will enjoy the evening with A. and Z. This time of year it’s generally not too hot and not too buggy so we’ve been trying to eat dinner outside whenever we can lately.

Oh and btw, Z. was over the moon with excitement about getting tickets to see the American Idol tour this summer for her birthday. She’s said that finally she will have something interesting to say she did over her summer vacation. Apparently vacations (like our trip to Mexico last summer) and all the great camps she has gone to over the years don’t rate LOL!

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12! I know I say this every year, but I can’t believe she is 12 already! The last year before the official teen years begin. Wow, we have come so far from that day 12 years ago when my water broke at 4am and the cerclage (a stitch “holding” my cervix closed, kind of) was taken out at 29 weeks gestation. I still remember the sound she made after coming out, kind of sounded more like a cat meowing than a baby crying.

This has been a year of big changes for Z. Last birthday she was wearing boys clothes and talking like a boy and trying to be a boy. This birthday was all about being a girl, the clothes, the hair, the girlfriends, the talk. It’s been a big transformation. Last year was anger and cancer, this year it’s much happier and (as far as we know) cancer free.

School was one of her best years yet, a real enthusiasm for learning (even if she whined about “hating math” a lot) and her first year of real grades (which were excellent). Her piano playing really improved also, and she spent a lot of time this year composing her own music. Creatively she is just as gifted as she’s always been but it’s maturing. Her fantasy world (“the comic”) has gotten more complex and incorporates the “real” world more. Only the comic world does not have cancer, disease or death.

So Z., I know the last few years have been difficult for you, trying to navigate all the changes in your life and deal with your mom’s disease. It’s been hard for me being the brunt of your anger, I mean I completely understand it and accept it, but it’s still has been hard to have that between us. This past year your anger has been dissipating and I am feeling a closeness between us that I haven’t felt in a long time. You are happy, deep down happy, and I am so thrilled to be able to share in your happiness. It has been exciting seeing you grow, watching you discover new parts of yourself, enjoying yourself instead of trying to stifle the changes that are inevitable as you grow up. I know that we will have rough times ahead, no one gets through the teen years smoothly, but I am feeling hopeful that we can weather them together.

We’ll spend the day together hanging out this morning, going to see a movie, going to your last piano lesson of the school year, having dinner together with Dad, going out for decadent ice cream for your birthday dessert and opening your birthday presents (which includes tickets to the American Idol tour in August, so you can see your beloved Scott live and in person!). I hope this coming year is your best yet! I love you sweet pea!

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to my knees

Okay, I’m going to get the cranky post out of the way first, then write about Z.’s bday party afterwards.

I’ve got a lot of health issues unfortunately. Let’s have some fun and see if I can name then all.

Cancer, diabetes, high blood pressure are the biggies.

Then there are the boring ones like allergies (which cause almost continuous sinus congestion and sometimes cause hives or rashes) and reflux.

There are the ones caused by radiation and cancer treatments like radiation proctitis, vaginal atrophy (requires daily treatment to keep things okay, menopause makes it worse), lymphedema, digestive problems, etc.

Oh and let’s not forget the chronic back pain.

But the one condition I have that brings me to my knees every time is a chronic salivary gland blockage problem. I first developed this about 10 years ago, sometime in the year or so after my chemo treatment for my first cancer (I have read that chemo can cause these things, but it happens for no particular known reason for most people). The salivary gland in my jaw (generally under my ear both above and under the chin at the back part where my jaw meets my ear) gets blocked up and swells like a fricking baseball. It can hurt, but usually is more what I would call discomfort as the swelling is quick and large and causes my whole face to feel pulled by it. It’s an unmistakable and constant sensation. It also affects my jaw, usually putting it out of alignment, so chewing is difficult. Eating really is the big issue. It’s usually what provokes an episode, as eating makes saliva flow and if for whatever reason the glands get blocked, the saliva backs up and has no where to go.

Initially it happened once a year and I went to the ER both times, the first time having no idea why my face was doing this and being pretty terrified. The 2nd time I went because I didn’t know what else to do. Neither time was I given much of anything to do about it, told to suck on lemon drops (doesn’t really help) and that’s about it. The 2nd time I was told to see an ENT, which I did but it was weeks before the appt. and the episode was over by then. The next time that it happened (maybe 6 months later) I figured out that I could massage the area and sometimes dislodge something, feel a squirt of saliva in my mouth and the swelling would decrease. Sometime (sorry, I’ve forgotten the timeline over the years) later I went to the ENT again, only this time saw the young new guy instead of the older guy (who I think died in between). He sent me for a ct-scan to see what was going on and to make sure there wasn’t a tumor or anything nasty like that. Ct was normal, no stones, no tumors, nothing. I was told that I pretty much had to live with it because while there was a surgical option, the cure was worse than the disease.

As the years went on the episodes happened more and more frequently. It got to the point about 4 or 5 years ago when every single time I ate, if you paid attention, you would see me massaging the outside of my face, especially if I ate something sour or vinegary like salad, but also pretty much whenever I ate anything. Once in a while it wouldn’t release and would get really blocked up. For some reason A. was able to get it to release easier in those situations. Maybe his bigger hands and definitely a more forceful massage, or maybe it was the positioning he could get by being another person. It would hurt like hell when he did it though, often giving me a sore jaw for a couple days afterwards, but it was worth it to get it to release.

In the last couple years it has gotten worse, the episodes are more frequent and more intense. My dentist recommended going to a couple specialists at a local big deal hospital, a dentist who specializes in salivary gland problems and an oral surgeon. The dentist had me tested for Sjorgren’s syndrome (sp? it’s some kind autoimmune disorder) which thankfully I tested negative for. Because I’d had a few PET/CT scans in recent years (that show from my eyebrows down) that didn’t light up anything in that area they weren’t concerned about cancer so didn’t send me for any more scans. He commented that I had very little saliva in my mouth and he couldn’t really “milk” much of anything on either side of my mouth (so far this has all be happening on the right side of my mouth, but lately I have suspicions that the left side could join in in the coming years). I think this is a problem that has been made worse by the various medications I take, most recently the diuretic I take for my blood pressure. He sent me to the oral surgeon to see if there was a simple procedure that might help, but unfortunately the surgeon felt like the ENT did, which is that the cure would be worse than the disease. The possible complications were high and the success rate very low. So, basically again I was told to live with it.

So I live with it, and as much as I hate it, I have felt like it’s been under some level of control. Until this past weekend. The weekend before I had a bad episode with it, while eating out at a restaurant (I HATE when it happens when I am in public) it was definitely swelling much worse than usual and neither A. nor I could get it to release. I was so miserable that I passed on going to a block party we were invited to on Sat. night (not our block but with friends from the area- A. and Z. went without me) as I couldn’t eat or drink anything but water the whole time. This is a big issue for me because of pain meds, I need to take them regularly and it requires eating first and the timing and length of this event made that difficult. Plus I was upset and didn’t want to sit there with a swollen face, not being able to sip a glass of red wine and be sociable.

During the week things calmed down and while I felt slightly swollen, for the most part it wasn’t swelling too badly when I ate and was not very swollen in between eating. Until Friday night when during dinner it swelled up pretty badly. Damn! Saturday it was bad but it was going down in between meals. But Sunday it swelled up badly and stayed that way pretty much all day and night. It gets worse when eating, but doesn’t go back down for 5 or 6 hours after eating (and then I mean it’s lessened enough that I don’t feel a lot of pressure, but it’s still not normal). Then it’s time to eat again (even if I could somehow deal with the hunger, I still need my pain meds at least ever 4 to 5 hours). We had friends over for dinner, thankfully good friends who I am a bit less self conscious with than I might be with newer friends, and tried hard to enjoy our dinner together. It was a really lovely time but it was definitely hampered by my discomfort at times.

So today I tried to sleep late so that I would have less hours to be awake (see what it does to me?) and woke up with it less swollen but still hard-ish (the swelling is hard as a rock, not squishy). I had breakfast which caused some swelling but nothing really horrible. Now I am really hungry for lunch but avoiding it as long as possible because one, I don’t know what to eat besides bread that will aggravate it the least, and two, I just don’t want to feel the baseball in my face anymore. (I’ve since eaten lunch, which caused a lot of swelling, which is starting to soften up a bit now, about an hour and a half later).

I have tried every remedy we can think of or that I have googled online, heat, cold, massage, swishing lemon juice, sour candies, drinking tons of water etc. Nothing works. From what I have been told, each time there is an episode it erodes the little tube things that the saliva flows through, so basically it gets worse and worse. I am concerned that this episode will not be an episode, but will become a permanent thing (in that my face will never be “normal” in between and will swell uncontrollably every time I eat). We have a bar mitzvah to go to this Sat. which is all frigging day. I can’t not eat all day. So I get to be at this event with a zillion people with a deformed face, uncomfortable and miserable. I cried yesterday and I never cry.

As I said, this thing brings me to my knees every time. Why? I guess partly because there’s vanity involved. I don’t particularly care to have a deformed face around other people. I think of my friend Fran (recently deceased) who had three primary cancers, oral, breast and ovarian. While ovarian is the one that killed her, the oral cancer was probably the most difficult, certainly the most visible. She had the initial cancer and then a recurrence. The recurrence required them to take out much of her jaw and reconstruct her face. The reconstruction was nothing like what you’d see in a movie, it was a very clear deformity both visually and functionally. She had issues with eating, drinking and talking because of it. By the time I had met her she’d been dealing with it for a long time and dealing with it well. But she admitted that it was still very difficult going out into public, meeting new people, having people stare, or look away, or whatever. I will admit, the first time I saw her it was startling, but I quickly got used to it and didn’t really notice it after a while. It was just her face. But I was still aware of how difficult it was for her to deal with each and every day. My issues are nothing compared to hers. But they are still something, something that visibly separates me from others. I hate that, I hate to be visibly separated from others I have found. Like in the summer having to wear compression stockings, which are hidden in the colder weather but visible under my cropped pants (forget wearing shorts) in the summer. Like being bald during chemo, it’s like wearing an “I have cancer” sign all the time. I hate that. I want my anonymity I guess.

The other part is eating becomes such a horrible experience, and it’s one I have to do 4 or 5 times a day. I LOVE eating, I LOVE food, it’s one of my greatest pleasures in life. I don’t eat to live, I live to eat. Anything that affects my eating is very hard for me. Things like diabetes, trying to lose weight, etc. are hard enough, but with this it becomes even harder since so many of my normal healthy foods are difficult to eat, and the ones that go down easier (bland carbs) are the worst things for me.

So now I am worrying about every public meal in my future. How am I going to enjoy the vacation that A. and I want to take in July if every meal turns me into a baseball face? For us more than half the reason to go on vacation is to find great places to eat! I am trying not to project into the future as it is really not helpful at all, but it’s hard not to do it when I am depressed by something. Today I can stay home, so I am. Tomorrow I have to go out, so we’ll see how it goes. Hopefully this stupid thing will dislodge (whatever it is) and go away, but I have no idea when that will happen or if it will happen. I know I have to come to terms with this somehow, I can’t live my life inside my house. But I am definitely not anywhere near coming to terms with it right now. I am still kicking and screaming about it.

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Z.’s last day of school was last Friday so today (Monday) feels like the first official day of summer vacation to me. We both got up late-ish (normal time for me, late for her, although she did get up early with A. and then decided she was tired and went back to bed) and are just puttering around the house today. She’s got a couple of weeks home before a week of nature camp. It’s a long summer break, 13 weeks I think (if I counted right) and she’ll be going to various camps for 6 weeks of that (a week of nature camp- mostly day with one overnight, 2 weeks of overnight camp, and 3 weeks of zoo day camp). We’re going to my mom’s condo to work on clearing it out for a week in July, and taking a road trip back from my dad’s condo in FL for a week in August to drive back my mom’s car that I am buying. Already our weekends are almost all full from here till Labor Day.

I haven’t really thought too much about what Z. and I will do with ourselves the weeks we are home. Today I thought we’d get her school papers organized, throw out the old homework papers, file away the stuff we want to keep (I have these great flat boxes from Ikea, white cardboard with those metal corners, one for each year through 12th grade. If it fits in there we can keep it. I also have a couple portfolios for over-sized artwork though). Our big project is to go through all of her stuff in her “playroom” (aka the shrine room) and her bedroom and get rid of the crap and stuff she’s outgrown. Eventually she will be getting some nice furniture for the shrine room from my mom’s condo so we want it to be ready for that. I think the purging thing in general is my goal for the summer, we really, really, really need to get rid of excess junk. Especially since I keep coming home with stuff from my mom’s.

It’s nice to know that for 2 weeks I don’t have to stop what I am doing at 2:30 or so and go get Z. from school or the bus stop. OTOH, every time we need to go out to the grocery store or whatever I’ll be getting a lot of resistance. She’s a homebody at heart I think. Or at least she hates shopping 🙂

Next weekend is Z.’s big sleepover birthday party, 6 girls including her. Should be fun (and loud!). No plans except for pizza and cake. She says they’ll figure it out as they go along. Okay. Hope that works out for them. It’s not her actual birthday until the following week. 12 years old! So hard to believe, especially when you consider I was near death when she was one. We have come a long way and hopefully will continue for a long time.

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good morning

I was in a really sh*tty mood yesterday, I’m not sure why, but A. got the brunt of it when we were supposed to be measuring Z.’s windows for new shades. I was acting a bit like Kate from Jon & Kate plus 8 fame. Thankfully today I feel so much better for no particular reason, but there was no particular reason for my bad mood yesterday either.

Taking advantage of feeling good I got some things done that I have procrastinating about forever. Like making my gyn onc appt., which was supposed to be in May, but now will be in mid July instead. In my defense I did call for 2 weeks in May (when I realized I hadn’t made the appt.) but his calendar wasn’t up yet (it’s never up when I am at the office checking out of my appt. which is why I tend to forget to call, in spite of putting it in my iCal reminders).

Another drs. appt. is Z.’s well visit, which for years had been in June, the month of her birthday but over the last few years got pushed out to August. I called the insurance company and they said I didn’t have to wait 366 days, it could be scheduled anytime after Jan. 1st of the following year. So I called today and while they were scheduling for late July I lucked out and there was a cancellation next week. Since Z. is out school the end of this week I grabbed it. So we’re back on schedule.

Then there’s my mammogram, again being pushed out last year to being during the few days between my birthday and Thanksgiving (and the anniversary of my sister’s death from breast cancer). Kind of a stressful time to be having a mammogram. So I called to schedule it for October but they wanted me to call the insurance company to verify that I could schedule it before the date from last year and give them the name of the insurance company person who I talked to. So called them back again, got the info and called back and got an appt. for early October.

Whew, I was on a roll! I even got a load of laundry done during all this, and then afterwards went upstairs and did a clothing purge so have a giant pile for the Salvation Army. After lunch I went out and ran two errands! And I still have an hour before Z. comes home from school LOL!

Seriously though, this was a pretty normal Monday, but after feeling like I got nothing at all accomplished yesterday it feels good to get all these things done and off of my to do list. Especially the drs. appts., I don’t know why but I have a terrible time getting myself to call and make them.

Helps too that it’s an absolutely gorgeous day outside. Sunny, warm but not hot, pretty much perfect weather!

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