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Archive for March, 2008

The drs. appts.

Yesterday I saw the rad onc and he said that he doesn’t want to do radiation right now as I’m stable and the radiation is too risky. His big concern is that the radiation could cause a hole in the small bowel and leave me with a colostomy. He still needs to see better dosimetry images to make a better determination (they are color images and they were faxed to him so of course are just sheets of paper covered in black ink). Oh, and btw, I was in and out of there in 55 minutes.

Today I saw the med onc and his fellow. They said that the stability of the tumor is a good thing and that I should continue taking the Megace for 3 more months and then rescan and see them again. If it’s stable again then they will consider extending the time between scans (something about gaining confidence if it continues to be stable for another scan). While I personally don’t know anyone who has been on Megace longer than a year (mostly shorter) the fellow said that some women have remained stable on Megace for years. So we can hope! The best news is no chemo for the next 3 months! As you no doubtably can tell, I plan my life in small increments these days, the increments between scans. Oh, and btw, I was in and out of there in less than 45 minutes!

So what’s next? We’re going to Disney of course 🙂

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No change

I was able to get my ct-results report faxed to me this morning before leaving for the drs. It shows basically no change (it was 2.8 x 1.6 cm and is now 2.9 x 1.6, they consider that no change) in the tumor size. So it’s stable, which is good (going away would be better for sure). There is also something about an increase in pelvic fluid that the radiologist recommends followup on. I never know if that fluid is from lymphedema or not, but we’ll find out what the oncs think about it.

So, now I can go to the rad onc appt. (in a few minutes) and relax while I wait. We’ll see whether he thinks I can have more radiation or not (hopefully he got all the records he needs to make that determination, that was 2 months of phone calls that I am hoping all worked out in the end).

Whew, I feel so much better. My mind was beginning to go to all kinds of bad places, made especially hard by the extra waiting. This never gets any easier.

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No news

Frustratingly, my ct-scan report was not ready today. I had expected to be able to pick it up along with the cd (which I did get) today and read it myself without having to wait for a dr. to give me the results. Instead, I am hoping that they will do as they said they will and fax the results tomorrow morning to my rad onc so that I can find out there (he is not the ordering dr.). So, instead I will get to sit in the waiting room for god knows how long (last time it was over 2 hours) in complete anxiety waiting to see the dr. to get the results. Really frustrating 😦

More tomorrow.

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Painting done!

I finished my painting today! I could probably keep working on it forever but it would just become different paintings over and over again, so at some point it feels like you have to say “it’s done, time to move on”. I left the painting at the studio so it could dry and will pick it up next week. Then I’ll photograph it with my good camera (instead of the cell phone camera) and post it.

Next Wed. is the last class of this session. It is also the day I see my medical oncologist and will likely find out what is in store for me the next few months. I will have my ct-scan tomorrow and my plan (if the imaging place cooperates) is to pick up my scan report and cd on Monday. I need them for my appt. with the rad onc on Tuesday morning (and both my drs. appts. next week are not in the same hospital system as where I am getting the scan done), but just as important I will be able to read the results and not have to wait for some dr. to call me or wait at the appt. (which could be 2 hours like my previous appts.) for the dr. to tell me. It gives me back some control.

So, if the tumor has grown I imagine I will be doing either chemo or radiation (depending on whether I am eligible to get more radiation). If it’s stayed the same then I don’t know what they will suggest, we’ll see. If it’s smaller then the Megace is working so I’d continue with that. I feel like the results of this are huge, it has such a great effect on my daily life in the coming months, and Z.’s and A.’s. The thought of doing chemo again (and they are talking about the same chemo as before, Taxol/carboplatin) is nauseating (I’m not sure if the pun is intended or not). Losing my hair again, being sick/out of commission for one week out of three, feeling better but poisoned the other weeks, the weakened immune system, neuropathy, etc.. It’s just not something I want to do unless I really have to.

So, feeling a little anxious right now to say the least. Trying hard to just stay in the moment for now. And this moment is finishing up this post and driving to school to get Z. and then bringing her to piano lessons, coming home and supervising homework, making dinner (A. is out of town, just Z. and I tonight) etc. Keeping busy is a good thing.

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Dr. appt. rant!

I got up at 7am (which is EARLY for me) and left the house at 8:30am to arrive at the drs. office at 9:10am for a 9:15am appt. I sat in the waiting room until 11:15 before being called into a room. Then I waited another 10 minutes before the dr. came in. We talked and she gave me a gown and asked me to take my stockings off (this was my lymphedema dr. who also deals with my back as she’s the director of cancer rehab in the physical rehab dept.). I waited at least 15 or 20 more minutes for her to come back in the room. She took her measurements (this tedious process of using a tape measure and putting pen marks every couple inches up my leg and measuring around at each pen point on both legs) and discussed some stretching exercises for my back. I got dressed and left the office at 12 noon! 12 noon! For a 9:15am appt.! By the time I got my car out of the valet parking it was about 12:20pm when I drove away. What a frigging waste of time! Seems like more and more I am having these marathon dr. appts.. My med onc is usually a minimum of 2 hours, often close to 3 including the actual appt. (and he starts his appts. at 1pm and mine are either at 1:00, 1:15 or 1:30). Except for the day after Xmas when I got in and out in less than a hour. The rad onc last time was almost 3 hours. It was close to 2 hours for the specialist dentist I saw for my salivary gland problem. In fact after seeing the oral surgeon he referred me to (who was the complete opposite, I was in and out of there in 20 minutes) I decided to cancel the follow up appt. with the specialist dentist because I am just not going to waste another 2 to 3 hours of my life just to hear that there is nothing for me to do (which was the oral surgeon’s opinion).

Not all my drs. are like this (and certain hospitals are MUCH worse than others in their chronic lateness), but between the ones that are and the interminable amount of time I spend getting scans it just wears me down. For some reason it just really pissed me off today.

Some good news though, I had my blood pressure taken while at the drs., which was the first drs. office reading since I’ve lost weight (and after 2 hours of anxious waiting) and it was NORMAL, 120/70 (it was 110/70 at home this morning so considering the stress factor I think it equals out)!

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