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Archive for January, 2007

3 Down, 28 to go!

No, I’m not going to do a daily countdown, but maybe occasionally I’ll post a countdown number. I wanted to clarify some things as I’ve gotten a number of questions about how often I go for radiation. It is Monday through Friday with the weekends off, so 31 sessions will take 6 weeks and then 1 more day into the 7th week. That is of course assuming that there are no missed days for weather or illness, and that they don’t monkey around with the time (which has been known to happen). The other question I have gotten a lot is if the side effects hit you right away or take time and it’s the latter. Right now I feel great and while I don’t know for sure when the side effects will hit, it’s probably somewhere in the 2nd or 3rd week. I’ve been warned by others who’ve had radiation to the para aortic area that it causes extreme nausea (however I am not sure if that will be the case for me or not since I have having a more pinpointed radiation beam) and extreme fatigue. We’ll just have to see how it goes for me since everyone is different. One thing I am concerned about is the anti-nausea meds really wipe me out, so if I need to take those I will have fatigue on top of my radiation induced fatigue. I told A. to keep his late mornings free starting the 3rd week in case I need to be driven back and forth (I told him he could bring the laptop and sit in a coffee shop and work while I was in there), and also pick up time for Z. from school. If he gets a job and starts working before I’m done then we’ll have to work something out with friends who have very graciously offered to help with driving or pickup. We’ll just play it by ear and see how it goes as it goes along.

So yesterday I waited a half hour after my scheduled appt. time to get into the radiation treatment room, then had the ct (and one film) and the treatment and was out about 20 minutes later. Today I waited only 15 minutes after my appt. time and had the ct and treatment and was out in 15 minutes. I counted these last two times and the machine goes into 6 separate positions and has between 10 and 15 radiation “bursts” in each position. I’ve had no coughing problems, sucking on a lozenge is working very well.

When I got there Tuesday the woman that checks me in tells me that they are “back to having everyone put on gowns” and asks me to change out of my clothes and into a gown. I didn’t argue with her but instead went to the tech who is at my machine and asked him if it was necessary for me to change. He said no, I was fine. The field that is being radiated is above my belly button and they need about a foot or so of clear skin so all I need to do is pull my pants down a few inches and pull my shirt up a few inches and it’s fine. For me to get changed is a big ordeal since I wear compression pantyhose which are a royal pain to get off and on, not to mention that sitting there in a stupid hospital gown is psychologically more difficult. So in the waiting area I am the only one besides patient’s friends and relatives who is in their street clothes.

After radiation yesterday I went and picked up my ct scan on cd in the hospital and walked a few blocks away to pick up my PET scan on cd (both to bring to Fox Chase for my appt. next Wed.). Today I went to another hospital building and picked up my pathology slides. All I have left to get now are my radiation records which they are aware of and working on. I’ll probably get them when I see the dr. next week. I have to sit myself down and read all the info Fox Chase sent me and fill out all the forms.

So far the commuting is pretty easy, I leave the house 45 minutes before my scheduled appt. time, drive downtown, park in the self park hospital garage, walk through the glassed in bridge from the garage into the 2nd floor of the hospital, validate my parking card when I get into the hospital, walk through the hospital cafeteria, down the stairs into the lobby and then outside and a short walk to get to the cancer center entrance, then wander through there for a while to get to the back elevator that brings you down to the basement where the radiation dept. is. I check in with the check in person (who recognized me today so I didn’t even have to give her my name) get my pink parking card (which gives me another $5 off, the last 2 days it’s only cost me $1 to park for over an hour), use the bathroom and walk down to the waiting area. I’m usually sitting in the waiting area by my appt. time, maybe 5 minutes before.

Yesterday I left the hospital after picking up my scans, drove to Whole Foods and picked up something for lunch and then drove to the Wellness Community and ate my lunch before my support group began at 1pm. Today I was done with my rad and was on my way to use the bathroom before I left when I recognized a former neighbor of mine (from 3 houses ago, way before Z. was born back in the late 1980’s) and stopped to say hi. Ends up his SIL has pancreatic cancer and was in getting some pre-radiation procedures done so I didn’t meet her, but chatted with my neighbor and his BIL for a while. I told them all about the Wellness Community and gave them my phone number as he asked if his SIL wanted to talk to me if she could call me. They both felt that the Wellness Community might be just the thing for her as she’s been having a really difficult time with her diagnosis. They are actually from New Orleans and are up here for treatment (surgery and radiation- they’ll go back home for chemo and any further treatment, apparently my hospital has an excellent pancreatic cancer surgeon) so they won’t be around that much longer, but it’s still probably worthwhile to check it out. They both looked really shell shocked. My neighbor asked me if it was harder or easier going through this a 2nd time (I didn’t mention that it was really my 3rd). I told him that a lot of the fear was absent this time since I know what to expect.

Wow, it’s 2pm already, my day sure goes fast now, it’s almost time to go pick up Z. from school. Tonight is another support group meeting, my gyn cancer group which meets one evening a month. The last meeting was in November only I completely forgot to go (my memory these days is bad). I’ve put an alarm on my computer calendar for an hour beforehand and told A. to remind me too, so hopefully I will remember to go tonight :-))

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One down, 30 to go!

Yes, you read that right, I am having 31 treatments of IMRT (radiation), so will be going for 6 weeks and one day (the drs. had originally said 20 to 25 treatments but had said that they wouldn’t know for sure till the physicists did their calculations). I had my first one this afternoon. When I got there I saw my dr. in the hallway and he told me that they had a nice plan and were going for the gusto. I found out after my actual treatment that he wasn’t kidding!

I went to my art class at the Wellness Community for an hour (it runs 2 1/2 hours) before leaving early and heading downtown for my rad appt. I had to wait about 45 minutes as they were behind and then they brought me in to get started. Today was a long appt., it ended up being about an hour, but normally it will be about 10 to 15 minutes or so (in the room, not including any waiting time). I still have this phlegmy cough and have been worried about not coughing while laying still (flat on my back with my arms on the table above my head and a wedge under my knees) for so long. I brought some honey lemon menthol eucalyptus drops and started sucking on them beforehand for about 20 minutes or so. When I went into the rad room I stuck one in the roof of my mouth near the back and kept my mouth closed for that entire hour and meditated on NOT coughing the whole time I was lying there (and managed to succeed). The techs kept talking to me and expecting responses, I didn’t want to open my mouth as it might make me cough so I was hmming and grunting my responses (I told them afterwards why I was doing that).

First they were to take “films” to make sure the positioning was correct from the simulation I had a week and a half ago. The machine’s imaging thingy wasn’t working properly which they discovered after trying a few times, so they said they would do it the “old fashioned” way and did it with stands they moved around the machine. After that they had the drs. look at them and okay them and then they did the treatment (the tech put on some music and told me that I could bring my own music if I liked). It didn’t feel that long to me (of course it was the shortest part of the whole thing today so that might be why). The machine moved into various positions around me and did these multiple short bursts (maybe 5 or 6, I didn’t count exactly- and short relative to the amount of time the machine whirred during the regular rad I had back in 2004) in each position (maybe 5 positions, again I was too busy concentrating on not coughing to count). Then they redid my tattoos (gave me 3 more about an inch down from the others). I asked why and he said that these tattoos were more precise (the others were done at the simulation). So I have 6 dots on my torso now. I asked him if they would be able to tell which ones to use and he said yes, that was a reason they took pictures of them (they stopped and came in and took photos in the middle of the radiation) and also that the machine would know if they used the wrong tattoo (the tattoos are there for positioning) and would let them know.

When I finished I scheduled my daily sessions for 10:45am although he said that they would likely be running late by that time of the morning- but it allows me to sleep late and still have time to get to the Wellness Community for art class and my support group in the afternoons a couple days a week. Also it allows me to get Z. to and from school if I have to in case A. gets a job before I finish treatment (which could happen, there are some good possibilities on the horizon). Then I went off to see the dr. (I’ll see him once a week). I talked to the resident first who is still trying to get the prescription insurance company to approve the Zofran they want to prescribe me for nausea. I went through this same nonsense when I went through chemo (different drug, but same issue). They normally only allow 7 pills every 21 day period, so need to pre-certify an exception. She said the insurance company was really taking a long time to approve it (which I knew would happen, that’s why I gave the drs. the info right away) but that they were on top of it. Then she said, maybe you won’t need it, or need much of it. Shortly after that my rad onc walks in and tells me that I might experience some nausea LOL. Hopefully they will get me the meds before I actually need them.

I missed lunch so drove home in rush hour traffic and ate a small snack when I got home. Then an hour later I ate dinner with A. and Z. and now I’m feeling nauseous from eating too much! I’m really tired so will post this and then go lay down in my recliner for a while and watch something on tv before heading to bed early.

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Showers & Wellness


I mentioned in a comment reply to my previous post that we were having problems with the plumbing in the new shower and the first shower was a bit disappointing. Well, I think that it was all due to user error! The problem with having a cool shower is that it’s complicated, plus it’s been so long since we actually picked out these things (last summer) that we couldn’t remember how they worked. It ends up that the shower heads on the wall and the handheld are 3 way (spray, rain and massage) which made sense, but the problem was there didn’t seem an obvious way to change from one spray to the other (and I’m usually pretty good at these kinds of things). I was showing off the new bathroom to the Head of Z.’s school (he was taking me out to lunch, such a sweet man) and mentioned the plumbing issue. This provoked the scientist in him and he asked to take a look. Sure enough, he quickly figured out how it worked, it involved grabbing hold of the little ball things on the head and turning. I had actually tried this, but hadn’t turned them hard enough to get them to move. So this morning I was able to take a great shower, trying all the various things (rainshower, body sprays, handheld- including the massage spray, wall shower) at different times (they work better if you use one at a time, but you can use as many at one time as you want). It was glorious :-))))))!!

I got word yesterday that the kid’s, parents and cancer workshop this weekend has been cancelled, not enough families RSVP’d unfortunately. The good news is that means that I can go to the Mind-Body Approaches to Wellness Workshop at the Wellness Community instead. I had really wanted to go to that but felt the family day was important for Z. I think they’re hoping to have one in the next few months so we’ll just wait and go then.

Lastly, I want to flood the heavens with good thoughts and prayers for a cyber friend of mine with 3 young kids who is going through a very difficult time right now with terrible pain from growing tumors. R., I wish you as much strength and wellness as you are able.

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My good day

Today was a good day. It didn’t start so good as I was pretty tired when I got up this morning as despite taking some Benadryl I couldn’t fall asleep till almost 4am last night. I was coughing a lot, which kept waking me just as I would start to drift, and when I wasn’t coughing I was just laying there in this kind of tired stupor, not quite awake, but not sleeping either. I got up around 8:15 to get showered and dressed as we were having very exciting visitors at 9am. The glass guys were coming to put the glass and shower door into our newly renovated master bathroom!!! This is the final touch that will allow us to actually USE the bathroom (well, not till tomorrow morning, but it’s exciting today nonetheless!) We started work the last week in September (they did 2 bathrooms- the hall bathroom and then the master bathroom) so it’s been months of waiting. We hadn’t really used the master bathroom since moving into the house since it had a really lousy shower (but had the only tub in the house, so Z. used it every night) so A. and I took our showers in the hall bathroom (which was renovated first and we put in a tub/shower so we have all been using that finished bathroom for a few months now). Starting tomorrow, for the first time since we’ve lived here, we’ll be using the master bathroom and Z. will be using the hall bathroom. This may not seem like such a big deal, but to me it is.

So, while the glass guys worked quietly upstairs (they really were very quiet for construction guys) I finally sat myself down and called (and faxed) all the places I still needed to call to arrange to get cd’s of my CT and PET scans, and the original glass slides for 3 different biopsies done over the last few years to bring to my Fox Chase appt. in a couple weeks. Again, this may not seem to be such a big deal, but I’ve been putting this off for weeks. I’m not sure why exactly, and I did get most of the other things I needed (paper records- and I do still have one more of those to get too), but I just couldn’t get myself to call for them till today. It felt like a huge accomplishment to have that done. Of course I still have to go pick up all these things, but for some reason that seems so much easier to me.

So after that I rewarded myself with a trip to the library (we live a half a block away). I took out 3 books, 3 cd’s and 1 dvd. One of the books is a humor book by Bob Newhart, I have no idea if it’s any good but I figured a funny book would be a great way to pass the waiting room time next week during radiation.

I went to my support group at The Wellness Community today and it was really good, I am so glad that I decided to join a group this time around. We had a lot of really interesting and thought provoking discussions about all kinds of things. It’s really helping me immensely being able to talk every week with these people.

Early this evening the delivery guys came with my new recliner chair and after dinner A. and I rearranged the living room (numerous times) to find a new arrangement that would accommodate the chair, allow people to see the tv and each other and not make the living room look lopsided (or like a movie theater). I think we came up with something pretty good, so we decided to live with it for a while and see. Z. was pretty excited about the new arrangement and especially about my new chair which she took every opportunity to sit in when I wasn’t in it.

Well I think I’m going to go sit in my new recliner chair with a hot cup of tea (to help break up my chest congestion) and relax.

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Rad delayed

I just got a call that my radiation is being postponed a week (so I’ll start Monday the 29th instead of next Monday). Seems the physicists need more time (my guess is that they didn’t get to mine this week). I thought things were moving along too smoothly! It’s probably for the best though, I’ve had a cough all week and today have started a raging head cold, so it will give me a chance to feel better before starting. I have to say it makes me the tiniest bit nervous that the cancer has one more week to grow, but in the scheme of things it is probably meaningless.

Meanwhile I spoke to my Integrative MD on the phone yesterday and we went over my supplements for radiation (what to omit, what to add, dosage etc.) I’ll be making an appt. to meet with him in a few weeks or so to go over possibilities for the future from a complementary standpoint.

Sniff, sniff, I HATE head colds and am feeling miserable. Z. and I are going to go lay on the couch together and watch the latest episode of Endurance (a Discovery Kids show kind of similar to Survivor that she loves) while I drink my lemon ginger tea. A. went out and got me wonton soup for lunch and another container for dinner, so hopefully that will help move this thing along. Blech!!

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Soft as a cloud

A. and I went shopping today and we bought a recliner chair (like the one in this picture only the leather is a darker brown with a hint of burgundy). I have been so uncomfortable lately with my back (standing is really my most comfortable position) that I’ve been craving a soft as a cloud recliner chair. We found this one today and it is really comfy. It was a custom order return so was discounted and available for delivery next Tuesday. I can’t wait! We also found rugs for our new, not quite but almost done master bathroom and went out for lunch. We ate at Iron Hill Brewery (I love their Southwestern Turkey Burger) and since I drink now (I hadn’t been drinking alcohol for many years but screw that!) I wanted to try some beer but didn’t want very much. I asked the waitress about sharing and she told us they had a 4 oz. size. Perfect, especially since I wanted a Lager and A. wanted a Porter. I had a salad with my burger, figuring I’d better enjoy it while I can since raw lettuce is probably not a great idea in the coming weeks (partly the immune system thing and partly the digestive thing). It was really nice being able to spend some time together today.

I talked to Z.’s teacher today and she told me that Z. has been doing really well this week. She thinks that my having told Z. what was going on has actually made things better. She was probably aware of everything going on (at least on some level even if she didn’t know the specifics) and now that she knows she’s okay with it. So that’s good to hear. We are hoping to attend a kids/parent cancer workshop soon also. We’ve been to a couple of them before in 2005 so Z. knows what to expect and is good about the idea of going to another one.

My daughter is doing her homework on the floor in front of the space heater in the kitchen wearing a tank top and a skort and bare feet (it’s 30 degrees outside and probably 62 degrees in the kitchen unless you’re right on top of the space heater- which is one of those things that looks like a wood stove but it’s electric and has a fake holograph-like flame). She seems perfectly happy but it’s making me cold just looking at her!

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Simulation

I had my radiation simulation today. What they do is put you in a ct-scan machine and adjust your body to the exact position that you will then have to be in for every radiation session. In my case I am on my back, with a wedge under my knees and my arms up over my head. I got 3 tiny dot tattoos (one on my belly a few inches up from my belly button and one on each of my sides. They use these to help position you exactly each time (they machine has red beams that they set and then match with your tattoos). I’ve got permanent marker X’s with circles or triangles around them drawn over the tattoos (I can wash the marker marks off). My experience last time I had radiation is that they do that again the first time and after that they usually just take a ball point pen and make the tattoo dot easier to see each time. They ran the contrast dye and did a scan of the middle of my torso, making many “slices” (much more than for my usual diagnostic scans). Then they took some lovely pictures of my tattoos, my entire body and and ID photo of my face. Just as last time it comforts me to know that they take these ID photos as my biggest fears with radiation is whether they are giving me the proper dose to the right area (a lovely thing to panic about while the machine is whirring around you). With that ID photo in your file at least they know you are the right person!

So they want me back next Monday at 2:45pm for more films and hopefully to also have my first treatment (depends on how the films look). If they need to do more tweaking then my first treatment will be on Tuesday. At that point I will get to pick my time (from what’s available of course) to have my daily radiation and will find out how long the treatment will go on. This appt. is during the first Open Studio (my art therapy class) of the coming session. If I’m feeling up for it I may go for an hour before heading downtown for my appt.

When I got home I got a call from Fox Chase with an appt. time for next Monday, which I couldn’t take because of the radiation appt. So they will call me back tomorrow with another appt. Just now my gyn onc called to go over where I am and told me that he had already discussed my case with a particular med onc at Fox Chase (who is the med onc that I was going to request). They had both decided that I should have the radiation first as that would take care of the tumor and then we can talk about possible hormonal therapy (this assumes that the rad gets rid of the tumor). The dr. that Fox Chase was giving me an appt. with was an underling of this dr., the new young associate. So I think tomorrow when they call back I will tell them that I want an appt. with the guy that my dr. has already spoken with and will wait for it as there is no rush now. Also it gives me more time to run around and get all the stuff they want me to bring to the appt. (all my original biopsy slides from the very beginning- cd’s of the recent ct and PET scans, radiation reports from my previous rad and chemo flow sheets (got those today)). I’m not even sure where to call for some of this stuff but I’ll figure it out.

Meanwhile this back pain is really getting old. It moves around (sometimes my back hurts more, sometimes my hip, sometimes my thigh) and varies in degree, but it’s always there and it’s really tiring me out. I don’t know how long it will take for the rad to lessen the pain, I guess it depends on how fast the tumor shrinks, but I’m really glad to get started soon. I’ve recently started getting muscle pain in the lower belly too, I think the muscles are all compensating for the back pain. I’ve had belly/pelvic pain opposite back pain when I’ve had back problems in the past. It’s kind of odd how it varies though, some nights I have the worst time sleeping and other nights I’m fine. Some days I spend most of the day feeling pretty good and get worse as the day goes on, other days I’m the opposite- worse in the morning and still other days I’m just hurting all day and night. I take ibuprofen 3 or 4 times a day and sometimes EX Tylenol in the middle of the night, and I know it does something because if I don’t take it I really hurt more, but it’s not that it gets rid of the pain either (but I may also not be taking enough, I’ve been trying to get by on as little as possible to save my stomach, I’ve been taking it pretty much every day for 3 months now). I haven’t pursued stronger pain relief because I need to function and also because there is hopefully an end in sight soon. But this pain does scare me a little, that one small tumor can cause this much pain. I don’t know how my sister got through each day with bone mets, liver, lung and brain mets, blood clots and heart/lung problems. After 3 months of this day in and day out I have a much better sense of how my mom feels (she’s dealt with chronic pain for years). It wears you down. On top of this the last few days I’ve started a cough, allergy related I think, it’s the drip down the back of the throat which makes a tickle and choke kind of cough. I was a little worried how I’d be during the rad simulation today laying on my back, but luckily the phlegm all seemed to settle in the back of my throat and didn’t tickle (what a lovely picture that is, sorry!) so I didn’t cough. I sure can’t be coughing during radiation! I remember last time I had rad I was so afraid I was going to get a cold during it. I think I started with a similar throat thing, but it went away after a few days.

I told a friend tonight that I’d just like to go to sleep and wake up after all of this is over (pain and cancer free of course!). I said this partly because I’m tired, partly because I’m sick of being in pain and partly because I don’t feel like running around gathering original pathology slides and ct-scan cd’s when I’m tired and in pain. But I don’t really mean it of course, in spite of the yucky parts I would never really want to wish away any of the days of my life.

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