Archive for February, 2007

After radiation today I ran into my med onc outside the chemo infusion area in the hospital. I haven’t seen him since last summer and had made an appt. recently to see him towards the end of March. He’s a really sweet guy and greeted me warmly. I wasn’t sure if he knew everything that was going on but he said that my gyn onc had informed him of everything. He said he’d heard I had a “local” recurrence. I was glad to hear he thought of this as a local recurrence. Anyway, I told him that I had seen a med onc at Fox Chase, he asked what he said, I told him and he looked at me and said we’ll talk when I see him in March. He said that I had gained weight and looked great, (he always comments on my weight gain as if it’s a good thing LOL, gotta love this guy) and that we want to keep me doing great so we’ll talk. It sounded to me like he thinks I should have some further preventative treatment. Kind of ironic that he’s thinking more aggressively when I thought the guy at Fox Chase would. Then it dawned on me, to the dr. at Fox Chase I’m a statistic, you do or don’t do this or that based on statistics. To my med onc I’m a real person, someone he knows and likes and he wants to do what is best for me personally. As we parted he asked me if I’d done anymore television work (referring to the public tv documentary on the arts in medicine I was interviewed for which aired last year). I told him no, it was a short lived career 🙂 So we’ll see what he has to say next month.


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Back on the table again

The machine is fixed and I’m back to daily radiation again. Monday I also saw the doctor who apparently was not informed of my missing 2 days of radiation. He said it was fine, but the resident, who is a bit less discrete was very unhappy that they were not kept in the loop. She said in my case it was not a problem to miss a couple days (they will of course be added on at the end) but that if someone had a very aggressive cancer it would be a problem so they are supposed to be notified. She also said that they were supposed to notify her and then she would tell the dr.

So my family visited this weekend and we had a really great time together. Z. and J. (my 9 year old nephew) had a great time playing together, they had a restaurant for which they made up menus, drew advertisements etc., they played a lot outside in the snow (using markers to draw on the hard ice covered snow), made music together and generally tore the house apart having lots of fun! Since I didn’t have rad on Thursday and Friday my stomach felt pretty good so I was able to eat closer to normal and my energy level was pretty good (I kept up with everyone else and was often the last to bed at night). My BIL’s fiance is from Mexico and she made (and taught A. and I how to make) chicken enchiladas which were incredible! We also were celebrating 2 birthdays, my BIL’s and my niece, so had a cake Sunday night (I skipped the chocolate cake and stuck with a vanilla cupcake, my stomach can’t handle chocolate these days). My niece who is a jr. in high school and looking at colleges was interested in A.’s alma mater so he took her to an open house they had on Saturday. My 18 year old nephew slept all day and was up all night so we didn’t see a whole lot of him, but when he was around he and A. spent a lot of time talking politics, he’s interested in becoming a political science major.

So, I’m now about halfway through my radiation (today will be 16 out of 31). My back pain is gone (knock on wood everyone please) and I feel a lot better than I expected to at this stage (knock on wood again please). I found out that it will be about 3 months after the radiation is finished before I will have another scan. This is because radiation continues to work for a few months after it’s finished. I realized today that this will be a little tough, the treatment will be over so there will only be waiting. Waiting is always the hard part. It’s much easier to be up beat and optimistic right now when actively fighting, the time leading up to that first scan will be harder. I’m glad I joined a support group because I think I will need it even more in the next year or so.

Well, off to rad number 16!

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No go again

Well, the radiation machine was still down today so they told me if I didn’t get a call before 9am on Monday morning to go down as usual on Monday. On the one hand, today was like a vacation, I slept a half hour later, went out to lunch with A. and my IL’s and didn’t have to drive myself anywhere. On the other hand I figure there is a reason they have you do radiation 5x a week rather than 3x, and with the weekend that’s a 4 day break rather than a 2 day break, so I hope that this doesn’t affect the treatment’s efficacy. Nothing I can do about it if it does, so I am going to chose not to worry about it. I’ve been learning to prioritize my worries lately, and many of them are deemed not worth my time and energy.

I made appts. today for the end of March with my Integrative MD and my med onc (the one I’ve been seeing since my original endo cancer diagnosis, not the one I saw last week at Fox Chase). Been putting both things off and finally decided I wanted to cross those things off my to do list. I can be really weird about making phone calls sometimes.

Still getting the on again off again queasies, but nothing serious. Oyster crackers (saltines) and candied ginger or even peppermint gum seem to take the edge off. I finally got my prescription okayed for 21 generic Zofran and got it filled but haven’t taken them yet. I’d rather not take them unless I really need them since the side effects are drowsiness and constipation. I’m just being careful about what I eat (no more chocolate, spicy food except for ginger, things with too much fat in them etc.) and stopped taking my daily 3 capsules of enteric coated fish oil (which I normally tolerate fine, but forget it now) and hope that will help things for a while longer.

We’ve got family (my late sister’s family) coming to visit tonight for the long weekend, my BIL, his fiance and my 2 nephews and 1 niece. We’re all looking forward to the visit, especially Z. who loves when her cousins come to visit. Unfortunately she’s coming down with a cold (which she’s determined to ignore right now). She really doesn’t get sick much, but it seems like in the last couple years the times that she does get sick seems to coincide with our visits with them. This upsets her, especially when she’s feeling lousy on the “long” day (the day of the weekend that doesn’t involve traveling). So I hope that this cold is mild and doesn’t keep her from enjoying playing with her cousin J. all weekend.

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No go

The radiation machine broke down today. I didn’t find this out till I had driven downtown in slushy snow for 50 minutes this morning and had been waiting in the waiting area for another 10. I hung around another hour waiting to hear if it was going to be fixable (my choice, they told me I could go home or wait and see, since I’d already gone to all that trouble to get there I figured I might as well stay). Ended up that the machine needed a part that had to be ordered so I went home. I got a call later this afternoon that the part would be coming in tomorrow morning and to call them around noontime to see if it was fixed and if I would be able to come in for an afternoon appt. They have more than one machine but because I am getting IMRT I can only use that one particular machine.

I didn’t mind the waiting and although I wasn’t thrilled with all the driving (less so because of the snow and the traffic the snow caused) that didn’t bother me that much. The time wasted wasn’t great (all together about 3 hours) but it was time I had allotted for radiation anyway. Mostly it just feels like I hit the curb. Things were going along fine and then bump! You have to stop and readjust and start again from 0 mph. Like the momentum has been stopped. Not a big deal really, but it’s kind of like a psychological ugh.

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Braces off! Well, kinda…

Z.’s braces came off this afternoon which is very exciting for all of us! The braces were pre-orthodontia, she’ll be getting them put back on once all her baby teeth are gone and her full grown teeth have grown in. A. took her for her appt. and waited for her in the waiting room and she came out without a smile but with a huge scowl on her face saying “another adult lied to me”. Well, no one every mentioned to us, nor did A. nor I even think about it, but she needs to wear a retainer for the next 1 to 2 years till her regular braces are put on.

Of course it makes sense when you think about it, otherwise things are going to move around, especially since there are spaces where the 4 baby teeth were pulled and the full grown teeth haven’t grown in yet. But it would have been nice if someone might of mentioned it so we could have prepared her. A. said something to them and they just looked at him and said, of course she needs a retainer. Whatever!

The part that has her really upset is the lisp it causes when she speaks. She’s embarrassed to go to school tomorrow and talk funny (well, if this snow turns into ice she may not have to worry about that tomorrow). It will get better in a few days as she gets used to it, in fact I have already noticed an improvement as she practices talking. However she’s not really had the retainer on much since she’s been home tonight since the reward for all the good behavior she’s shown in enduring all this orthodontia at 9 years old is some really bad for your teeth bubble gum and a sticky rice crispy treat from Whole Foods for dessert tonight.

Sigh, we’re all feeling like the poor kid is going to be wearing braces for the rest of her childhood in one form or another (which is probably pretty accurate when you consider this retainer, the next braces and then a couple more years of a retainer after that). To a 9 year old the prospect of having really nice teeth afterwards is not really an enticement. Of course it’s all A.’s and my fault since she inherited her mess of a mouth from the two of us, who in our day didn’t get pre-orthodontia, they just yanked out 4 or 6 full grown teeth on each of us.

Well, hopefully she’ll adjust to this as well as she did to wearing the braces. This is better than the braces because at least she can take it out to eat sticky food, but the concern is her losing it (I myself threw out my retainer in jr. high school with my lunch one day and it was never replaced which explains why my teeth are crooked). The orthodontist recommends they don’t take it out away from home to guard against this, but I suspect that compliance will be hard. I wonder how many retainers we will have to pay for before this is over!

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Med Onc appt. today

Today was my appt. with the medical oncologist at Fox Chase. A. went with me, which was helpful not only for emotional support but also for helping me remember everything that was said. In a nutshell the med onc thinks that the radiation is enough for now. He feels that we should wait for “if and when” the cancer returns before doing any chemotherapy or hormonal therapy. His reasoning is that now (meaning after my radiation is finished) there is no measurable disease and there is no way to know that doing chemo will do any good. Weighing the toxicity of chemo and also keeping in mind that if we do it now and the cancer comes back anyway I will have a lot less options, not only with what chemos I could have, but also it might prevent me from participating in a future clinical trial (currently there are no clinical trials going on that would be appropriate for me). Since chemo works on dividing cells and we don’t know if I have any (he says even if there are cells they could very well be dormant currently and chemo would be useless on those) he doesn’t feel there is any justification for doing it. Same for hormonal therapy, except that it is a less toxic approach then chemo. If I felt really strongly that I “had” to do something or I would go crazy then he said he would be fine with me doing hormonal therapy. But he didn’t really see a benefit otherwise to doing it now. He felt that I didn’t need to continue seeing him at this point, seeing my gyn onc was enough, but if I need him in the future to call him. He also gave me a pamphlet for the Fox Chase Family Risk Assessment program for breast and ovarian cancer (since my sister died from breast cancer).

Honestly, I was relieved. He basically said what I had hoped he would say. I really didn’t want to do chemo and I had mixed feelings about the hormonal therapy. It does leave me with uncertainty of course, but as I said to A. when we left, so I’ll finish the radiation and then we’ll get on with our lives and just keep watching. I did ask the dr. point blank about the “if and when” comment, I said that all I had read was very negative about recurrent endo cancer. He said that the odds were that it would come back, but it wasn’t 100%, so you just don’t know. The fact that it is an isolated recurrence and not anywhere else is a good thing though.

Now it leaves me with what to do about drs. I’m feeling kind of torn at this point. On the one hand, I can just stay where I am, the medical care is good (even if one of my drs. lacks any people skills) and it’s easier than trying to change drs. while in treatment or even right afterwards. While my gyn onc needs a personality transplant, his nurse is really wonderful and in some ways at least in terms of the personality thing that can be more important since she’s the one I really deal with most of the time (things like getting test results fast and questions answered quickly). I’ve dealt with difficult nurses before and believe me, the dr. can be the nicest dr. in the world but if you don’t get along with the nurse, forget about it! The thing is my gyn onc wasn’t always this way, he’s never been Mr. Personality, but he was much better than this. In talking to the med onc (who used to work with him when my gyn onc was at Fox Chase and now they deal with each others patients a lot, he was the med onc that my gyn onc called when I was diagnosed) he kind of confirmed that my gyn onc isn’t very happy right now. So who knows, he might leave and a new dr. take over, or maybe he’d get a partner again. Gyn onc’s (and med onc’s) around here play musical chairs a lot. I’m also going to think about whether to go back to my med onc at my current hospital again too (technically I am due for an appt. this month, but I had never scheduled the appt. since their calendar wasn’t ready and I forgot about it). He is really easy to deal with and I can work with him too (plus I want to hear his opinion on what he would want to do or not do). So lots to think about, but I don’t have to make any decisions right now.

Sigh, I’d really rather ignore all of this and see no doctors at all thank you very much, but guess that’s not in the cards for me, especially if I’d like to stay alive. The whole hospital/medical/drs. thing can be depressing. While everyone at Fox Chase was very nice, very friendly, etc. I still found it kind of depressing being there. Maybe it was the fact that every patient in there had cancer. It really struck me for some reason. Or maybe it’s because I’m tired, especially in the afternoon, and sitting around a cancer hospital waiting was not where I wanted to be (I’d rather have been curled up on my living room couch with a blanket). Oddly, I have not found the radiation dept. at my hospital too depressing though. I breeze in and out of there feeling fine, have met some very nice people, although my heart does break for what some of them have to go through. The lady who is on my machine before me gets radiation to the throat (she also has a trach) and she is almost done but her skin is totally breaking down and it’s pretty awful. The techs were hoping the dr. would let her stop, but suspected the drs. would insist she finish the last few treatments.

So 8 rads done, 23 to go! I spoke to a fellow rad patient as we walked through the building on the way out after treatment today, a very sweet Asian woman who was maybe around my age (or younger, I have such a hard time judging people’s ages anymore). She spoke pretty good English and told me that she has cervical cancer and has to have 40 external rad treatments (and also internal rad, like I had a couple years ago). 31 didn’t seem so bad all of a sudden! When I explained to her that I had had similar treatment initially (only 25 external) but now was dealing with a recurrence she rubbed my back and told me that it was going to be all right. Very sweet! She’s farther along than I, but since she has more treatments than I do I’ll probably see her for at least a couple more weeks. There’s another young woman I talked to yesterday (breast cancer, it runs in her family) who has a 9 and a 12 year old, who wears her bald head proudly, taking off her winter hat as soon as she gets there. I always admire women who can do that (there’s another woman there, older than I, who also does the same thing), I could do it at home and in front of family and close friends, but not in public. I needed a bit more hair to feel comfortable without a hat or wig. Anyway, it’s interesting all the people you meet in the rad waiting room 🙂

Okay, enough, the recliner chair awaits!

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So apparently I have this jinx thing going on. If I say I feel great, then within a few hours I feel awful. Then if I say I feel awful, then within a few hours I feel great. So I guess I must complain about feeling awful all the time to feel good? About an hour after I wrote the queasy blog I took a nap and woke up feeling fine and have been feeling fine every since (oh no, what I really mean is I feel AWFUL- is that good enough to work for the jinx?).

Friday I had an appt. with my gyn onc, not my favorite doctor of the bunch. It was my regularly scheduled 6 month checkup and while I had been there a month before when I was being diagnosed with this recurrence and he had done a pelvic exam he told me to keep the appt. So it’s the same time as my radiation, but the rad techs tell me it’s okay, just come to them afterwards. I go to the gyn onc appt. and when I get into the exam room the nurse is completely confused as to why I am there since the drs. notations say that he will see me after radiation is finished (which is nice since he never said anything to me about that). She asks me no less than 6 times when I started radiation (to which 6 times I answered the same answer, this past Monday). Then she says, well get changed just in case. I say, I’m wearing compression stockings can you please check to make sure I need to get changed since they are hard to get on and off. She checks and says yes, he wants you to change. I figure maybe he’ll give me a pap, since he just did a pelvic a few weeks ago.

The dr. comes in and does a pelvic, no pap. He’s got a med student or some such with him which actually makes him just the slightest bit more personable than his usual asocial manner. We talk about radiation and my appt. at Fox Chase the next week and he says come back to see him in 3 months. I get dressed and as I am leaving I pick up my paper thing to bring to the front desk and underneath is another paper. It’s an amended pathology report dated 1/25/07 from my original surgery in 2004. I bring it out and ask about it, the dr. doesn’t know about it and the nurse says, oh, I was supposed to show that to you. He glances at it and says it’s just a typo correction, something about left and right side nodes, no big deal. I say I want a copy of it so I have a correct copy to bring to Fox Chase. He says, we sent them all the records. I say no, I sent them all the records and want this one. He says in his best patronizing “I think that you are being silly but I will pacify you” kind of voice, that I can have a copy. They give me a copy and I go to the front desk to check out. I find out that they don’t have the calendar for 3 months and to call them in a couple weeks. As I leave I read the amended pathology report. The “typo” is not about which side the positive lymph node was. The typo is the fact that there were TWO positive pelvic lymph nodes on the left side, not ONE like the original pathology report stated.

I find this very disconcerting, and while no, it doesn’t change anything, the treatment would have been the same, it’s just one more sloppy thing. Also I am not thrilled with my drs. attitude about it all (or about his attitude about the fact that the HER2nu testing and hormonal testing had already been done). I think that if I like the med onc at Fox Chase this week I may see about having a gyn onc there for followup instead of going back to this guy. That way once I am done with radiation I can be in one place. If I don’t like the Fox Chase guy then I’ll look at someone at another hospital (there is usually only one gyn onc at each hospital, sometimes two). Although finding new drs. is a pain, this seems like a good time to make a change.

So, after the appt. I went to radiation and they took me right away and I was out of there quickly. So the first week is done and only 5 weeks and one day to go 🙂

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