Have decided to get creative about this …
Had the latest PET scan last Thursday, after having been “rescued” by my new oncologist a few days earlier. She was the first person since all this started last May to point out that CEA marker tests were totally useless in my case (they always ended up “normal” even when I actually had tumours) and also suggested that CT scans were probably not going to be that helpful either. Hence the latest PET scan. And well, it wasn’t very good news …
Turns out I have two new tumours – one in my liver and one in the peritoneum. To be honest, I was half expecting this because it felt like I had “missed a step” when my ex-onc didn’t prescribe adjuvent chemo in January (because I’d had two back-to-back surgeries and had apparently been NED since last September). And so it was back to see Dr Ana yesterday evening. A very sobering experience because we are talking about maintenance chemo now. And I suppose this has always been the case since I was diagnosed (it was never a very positive prognosis) but while I was on the first chemo and and having all those operations it felt like all that was being done in order to get rid of the cancer, and not just postpone the inevitable. So I am having to mentally and emotionally switch gears here.
First response was … FEAR. I started crying when I was told I’d be starting chemo again this week (Thursday!). Felt like such an idiot. I mean, I was more or less okay until Dr Ana said I should be able to live my “normal life” while on chemo for the next six months. I then explained how during the first week of the cycle I’m totally knocked down with nausea and fatigue, etc … and she basically told me I would have to try harder if I wanted to keep working because there was no reason for me to feel that bad. And that’s when I started to cry.
So like, what? I lie around in bed for 4-5 days writhing in nauseous agony just because I’m a wimp and not trying hard enough? Oh, and apparently the effects of the injection (including not being able to touch or drink anything cold) should wear off after a couple of days. In my case it’s ten days. Which raised an eyebrow when I mentioned it. So I decided not to get into “metal mouth” and “chemo arm” and not being able to use the injection hand for a week, and basically feeling like my whole body was being poisoned … just in case she decided to lower the dosage or change the chemo treatment. Because basically, I want what worked last time! Or at least, what seemed to work.
I still don’t know (and will never know) if these new tumours are a result of not having received immediate post-op chemo, which is the usual protocol. But the message seems clear now that, since I’ve had a recurrence so soon after all that surgery, no more surgery is going to be happening, and I am now on what is known as maintenance chemo.
Given that the original prognosis was that I had a 50/50 chance of still being alive five years after diagnosis, I reckon it’s time to get creative with that notion. With the way I live the rest of my life, however long that turns out to be. And I don’t mean just spouting the usual “carpe diem” mantra that is so prevalent these days because, let’s face it, we do have to think about tomorrow. Nor that old chestnut about how none of us can say how much time we have left because of possibly being run over by a bus (actually, if one more person says that to me … grrrr). I’m talking about seeing my situation as a place for creative growth to happen, and then making that happen, instead of just riding this crazy life-or-death cancer rollercoaster all the time.
I mean, chances are I won’t have to worry about not having a retirement fund. But why should that stop me from building towards a future, no matter how elusive it may seem right now? I have to admit I’m still feeling quite scared about the next six months, and not least of all because I have no idea how I’m going to pay my rent. I’m also dreading the chemo big time, but as there won’t be any major operations involved this time, maybe I won’t get so sideswiped by it? And it helps knowing that you guys are going to be there with me. Just like right now. Thanks for “listening”…
prognosis & treatment (3)
prognosis & treatment (2)
prognosis & treatment (1)
casa azahar 
Man…..okay – are you getting the best anti-nausea meds – have you gotten aloxi and emend (sp)? How often will you have chemo – every week, every other – every third? Is there anything I can do?
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No-one should be made to feel that the way their body reacts physically is something over which they should feel persona guilt. That’s extremely unprofessional of someone in a so-called healing profession; especially since, if she were better at her job you’d probably have less reason to experience pain in the first place.
I know you’re strong. I know you’re smart. I know you’re learning and growing every day from everything you’re going through. I just wish you didn’t have to be going through any of it. You deserve to be in a hammock, sipping a nice drink with six different kinds of garnishes in it, while Brad Pitt gives you a foot rub. Naked.
And now for the advice section of our daily comment:
Get that Groshong catheter. If you’re having that much physical discomfort, one very VERY minor surgery that will spare you so much pain shouldn’t be something you have to think twice about. Do it now and you won’t have to get another needle except when they have to draw blood. They just put everything into the line and you don’t feel a thing. The biggest mistake I made was waiting too long.
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I’m not too impressed with your doctor’s “you aren’t trying hard enough” line. That just seems insane. The chemo reaction is what it is and you need either better meds or help handling it or something – she should be able to help you better than just tossing that off. When you get your equilibrium back, try and address it again with her. Maybe if you’re not in shock you’ll be able to explain what’s going on better. She may have been fretting, too, about delivering the results after her stupid collegues had pronounced you NED.
How’s Nog taking it all?
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We’re here, I’ll do anything I can manage.
Nog, Pip, give her a hug.
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I’m crying, Az. I wish I could just run off to see you with a bottle of my homemade Tempranillo, even if the doctors told you you couldn’t drink it.
My thoughts and wishes are with you, even if that sounds depressingly ordinary.
Be strong, be brave, and most of all, get better.
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Oh, Az. First…someone was suggesting a Groshong…do you not have a chemo port for infusions? Because if you don’t have one, GET ONE. It *will* make things easier physically. As for ‘wanting to do what worked before,’ remember that chemo is cumulative–and that I’m the poster girl for lowered doses that made it possible for me to get more drug for longer (and bounce back in a reasonable period of time after infusion, and keep working through the whole mess.) It wasn’t until this last one (chemo regimen #5, and remember I was into this 4+ years that this point, that I really got knocked for a loop. And post liver-resection, Dr. Personality’s first dose level was too intense, and after a bit of a tantrum on my part (yes, I do know what mg/m2 dose equals for a woman of my height/weight…that helps!) I got her to lower the dose. And I stopped that chemo after six two-week cycles.
Anyway…no more lectures, kiddo. But you know I’m thinking about you, and you can do this. I have to have Twitter direct messages turned off during the day at work, but PM me or send an email and I can write back ASAP.
Strong thoughts, Az.
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*slaps doctor for being daft enough to suggest you choose to react the way you do to the chemo*
*gives doctor another slap, just for good measure*
I wish I had useful practical advice to offer, but I don’t. All I can do is stand beside you slapping doctors… but that’s my forte, so I’ll stick to it!
Love and positive thoughts coming your way via Koala Mail xxx
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Ditto on the Groshong from here. That will make it easier on everybody, especially since you have crappy veins to begin with. And chemo will only make them worse. Also. putting it in a large instead of small blood flow with a Groshong may reduce some of your other symptoms.
Speak up and keep speaking up about your reactions. Your oncologist has to “try harder” too to make you comfortable. If you need a lower dose in order to keep working, take it. I think it is important for you to work, now, to be able to feel like you have charge of your life, however long it is.
One thing I know from my nursing days is that every body is different. We fail when we try to put every body in the same box, and say that this is a standard dose. Doesn’t work. Some people need a smaller dose, other people a larger dose, no matter what meds you are talking about.
Keep your chin up, girl. And if you don’t get along with Dr. Ana, or she makes you feel bad, perhaps there is a third oncologist in your future.
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Az, I’m wishing I could smack that doctor right now.
Or at least give you a hug.
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Jesus H….
I would like to kick the ass of anyone who would say to someone that “you have to try harder” when you are dealing with a medical therapy that EVERYONE knows knocks the shit out of you and ISN’T like a trip to the dentist. At the very least, an acknowledgment that you DO feel like shit and you will feel like shit and it is not easy and “I wish I could say it was going to be easy….” would be in order.
I wish I could offer more than just a supportive ear and words. If I was within ass-kicking distance I would at least be able to do that.
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Bernie Siegel — who got so promoted that he became sort of camp — used to work with kids who were going through chemo, and they would do artwork about it. My memory’s a bit smudgy, but I recall that he argued for paying attention to the way people drew their treatment — was the radiation apparatus a torture instrument or a magic sword? Likewise, he asked people to discuss dreams they had about their treatment; did the dream say the treatment favored by doctors was inadequate? or brutal? or the wrong one? He encouraged people to raise the questions with their doctors that the dreams and drawings raised with them.
And if people reached a point of assurance that they were doing the best things they and their doctors could, he would promote their meditating on an image of the treatment method as helpful and free of destructive effects. The little kids would draw tiny Supermen KO’ing grody tumor cells…
That concept is a lot more complicated than just “trying harder,” because it opens up the possibility that you might have to talk back to the treatment team to get the best result. Tough titty for them. Something tells me you could come up with one hell of a graphic concept of what your treatment is and should be.
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:hug:
Perhaps Dr Ana was doing the tough love thang? She doesn’t know you that well yet but will soon realise that the person toughest on az is herself.
That chemo port seems like a jolly good idea.
How’s the back now?
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At the risk of pissing you off I’m with Teuchter here. and there is the possibility you may have misinterpreted what she really meant too…
Azahar, I think you will feel better if you are able to keep teaching the few english classes that you have. Bringing in some money of your own is empowering and less stressful than worrying if you’ll get enough donations to live on. Getting a port is an absolute necessity – it will make a world of difference to what you had to put up with before.
you can’t know in advance if you’re going to be as sick this time around. will keep my fingers crossed for you
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As we say in Wales… b*gger, b*gger, b*gger… (nog will understand).
I just don’t know what to say. I ‘ve just had one of my dearest friends (Hawkwind the Smith) cleared of his colon cancer and now this… b*gger.
One thing worth concentrating on is the huge number of friends here who will not walk away from you.
Bendithion,
Craig.
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F*ck
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Guess that shows I don’t have anything “useful” to say.
Beyond sending my best wishes etc
And (I know you know this) but people making the “none of knows how much time . . .” comment are doing their best.
Most of us haven’t been where you are, and struggle to know how to react, or how we want to be seen to be reacting. This is one of those things that is very impersonal on-line, but is no easier (for different reasons) face to face.
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Wow, I’m overwhelmed by so many wonderful replies (and Johnny wins in the “most pithy” category 😉 ). I first read your comments on my iPhone while I was still in bed, which has given me some time to digest at least some of it. It also helped me formulate A Plan, which always helps. Next step will be A List. Watch for it.
Re: Dr Ana. Ricardo warned me before he made the first appointment with her that she was tough, and I told him I was quite fine with tough (because I am fine with it). But to me there is a big difference between being tough and being dismissive. Now, I’m not saying that Dr Ana was being dismissive (or at least, not totally), and I fully admit that sometimes I am oversensitive (oi! no laughing at the back) and so I may have “misheard” her tone about a couple of things. But I didn’t misunderstand what she was telling me about the treatment.
So okay, even if she wasn’t scoffing at my inability to cope with the nausea by insisting that the anti-nausea drugs I was taking should have taken care of that, that was the point I felt myself “shutting down”. It’s also when the tears started.
Bottom line is that I will have three 3-week rounds of chemo (and a colonoscopy) after which they will do another PET scan. Regardless of what that shows, I will continue with chemo for another three rounds after that. If the tumours have “disappeared” like they did before, then I’ll continue with the same chemo cocktail. If they have grown or spread, then they will change the chemo and re-evaluate the treatment.
That part is clear enough. It was the “you should be able to live a normal life” comment that threw me. Because, in fact, I never wanted to stop working, and I might have found a way to keep my classes going during the last chemo if it hadn’t been sandwiched between two major surgeries. Actually, it was the three operations that threw the timing off for maintaining my classes. There just wasn’t enough “well time” in between to start up again. Until I got the “all clear” last month. And unfortunately, February is not a time when many people are looking to start an English course.
And so, because I feel like crap already for having lived off donations for so long, the perceived insinuation that I was exaggerating my response to the chemo in the first week (and just had to “try harder”) hit a lot of painful nerves.
THEN … I did ask Dr Ana about getting a port. And her first response was, “A port? What for?” (again, I “heard” scoffing, but I admit I could have been overreacting). So I explained how I have really bad veins, etc, and she asked if any of the injection nurses in the chemo room had suggested I get a port. Um … no. And then she said … “Well, if you really want one we can put one in for you”. Aaargh. So I gave up and said I would continue with the hand injections for now and see how that went.
Next up was discussing giving me some different anti-nausea medicine (at last!). Dr Ana also suggested that I not take the Xeloda pills after the injection and do a two-day pump thing instead, as this might cut down on my side-effects. And when I asked how the stuff gets pumped through she answered “Well, with your port, of course”. Aaaargh!
So I tried to explain that I wanted to stay on the same chemo as before because it seemed to work for me, and that I didn’t think I really had problems with the Xeloda pills (since I take them for two weeks and only feel really sick for the first 4-5 days) and that I seemed to have a worse reaction to the injection. And again, this notion was pooh-poohed since “any reactions to the oxiplatin should only last a couple of days”. In fact, it’s about a week to ten days for me, and my arm and hand never quite recover from the injection before the next one, so we have to alternate hands each session.
Anyhow, are you getting the gist? Yes, some of it could have been me misinterpreting Dr Ana’s motives (though not the actual information), which caused me to shut down and get all hyper-selfprotective. But the clincher was when she said she didn’t see any reason why I couldn’t go back to my original oncology team for consults. Total shut down happened then and I felt completely tossed aside. Again, I got the “if you really want, I’ll continue seeing you…” thing, but I mean, fuck.
And now it’s today. My Plan (in a nutshell) is this. That I am going to put off starting chemo until next Thursday, rather than the day after tomorrow. It occurred to me that doing this while my back is fucked (I’m still walking with the crutch) would really not be doing me any favours. And a week’s delay at this point (when they should have started me on the chemo in January) isn’t likely to change any future outcome.
Then I am going to make my List and go back for another consultation with Dr Ana. The List will include all the side-effects I experienced and their duration, including the very painful injection arm. I will also ask to have the benefits vs risks of having a port installed clearly explained to me and then (probably) have one put in. And I won’t leave (or shut down and crumple up inside) until all of my questions have been answered to my satisfaction. And I will NOT cry.
And now I need to plan a class for a new student who is starting today. Brings the grand total up to four classes a week! But honestly, the lack of classes hasn’t been due to lack of trying. Even Nog has lost a couple of students and is looking for more, without much success. Which is why I need to get other sources of income happening. Anyhow, back to work…
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Go for it!
I especially applaud the “And I won’t leave (or shut down and crumple up inside) until all of my questions have been answered to my satisfaction.”
It is so easy to shut down, as you describe it, as the answers keep not coming. Make yourself do it (or if you have someone with you, make them make you).
Good for you.
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“She doesn’t know you that well yet but will soon realise that the person toughest on az is herself.”
Yeah, and she especially didn’t understand the tears, Teuchter. Before I left she gave me a prescription for Alprazolam (obviously she thinks I am always a snivelling emotional wreck), saying that if the midday pill made me too drowsy I could cut back to just taking it morning and evening. Yeah right. By that point I was too worn out to even try explain how off-base she was, so I just let her fill out the form and then left with Carmen.
Sledpress, I’m going to seriously “paint a picture” of how I perceive my treatment and let the doctors know. They are clearly mistaking FEAR for weakness, and then take any complaint I have as “exaggerated”. But former abuse victims simply do not respond well to being strapped down and having nasty things done to them. Just the thought of sitting in that damn chemo chair totally fills me with panic and dread (just writing those words has made me burst into tears). Also, lots of things make me feel nauseous (that’s just the way I am), but I actually have a very high pain threshhold. The chronic back pain that I live with on an almost daily basis would probably make others take to their beds, or at least reach for the painkillers. So when I say that something actually HURTS I’m not just dicking around.
So it’s time I took my old Toronto GP’s advice and let the doctors know that they are treating a whole person, not just an illness and a bunch of symptoms. And that I am not simply a body reacting to side-effects.
Hope they’re ready for it…
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Where’s Nog in all this az?
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Smart thinking on making plans and lists – you’ve often said how important gaining some sort of control is. And I think that’s a wise decision to postpone for a week while your poor back improves too.
Sending you very much love and virtual hugs xxx
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Nog is still around, alji. I’ve specifically asked him to really take care of his own stuff from now on so that particular extra stress won’t be hanging around. I don’t mind at all if he asks for help with stuff, but the “let things slide and then get az to rescue me” routine really has to stop. Yeah yeah, I know, I don’t have to rescue him, but that’s too complicated a story to get into right now. Suffice it to say that he promises to be responsible for his own work, etc, now, so that I can focus better on what I need to do. He continues to help around the house, loves the cats, etc, but to be honest, I think me being sick scares the shit out of him. But hey, I can relate to that.
Oh, and in case my previous comment came across as harsh, I didn’t mean to imply that the doctors should have understood the difference between fear and weakness since they clearly don’t know me and see hundreds of patients a week. I just wanted to say that I think the time has come for me to help the doctors who are in charge of my treatment at least understand me a bit better so that my responses to things don’t get misconstrued.
All the oncologists I’ve met (so far) have come across as technicians more than medical doctors, in the sense that whatever people skills they might possess are not immediately evident.
I remember after my last operation a nurse’s aid came in to give me a “bed bath” and I was way too sore to be moved without extra help (must admit I got spoiled by the “evil twins” who were the best sponge bathers I ever met, though they did like to tease me). Anyhow, I started barking at this poor woman that she was doing it all wrong, she had to get someone else to help, blah blah, and even when she did I kept on ranting at how they were still doing it wrong, etc … and when the helper muttered something like “what’s HER problem?”, the first aide just said in a motherly tone, “Oh it’s alright, don’t worry, she’s just scared”. And all my fight (and fear) went out of me in that moment and I thanked her for helping me … even though it was the worst sponge bath I’d ever had. 😉
Fear can sure do crazy things to a person. And it is often perceived as being something else.
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“I didn’t mean to imply that the doctors should have understood the difference between fear and weakness since they clearly don’t know me and see hundreds of patients a week.”
Ummm…. Seems to me that that is part of their job. If they don’t know the difference between fear and weakness, they shouldn’t make the assumption that you are “just being a chickenshit”…
Having said that, I have never been able to deal with a doctor who doesn’t understand fear about something or how painful (emotionally) certain conditions are when everyone knows they are… miscarriage, for example.
If a doctor is in a certain field and certain emotional of pain issues are part of the whole picture, they shouldn’t be able to pretend that either they aren’t or that this is some personal issue YOU have or that this is some unheard of phenomenon. Okay… the doctor isn’t necessarily in the business of comforting you or curing the emotional stuff but they can at least be sympathetic or if they aren’t sympathetic at least make the effort of saying “I know this isn’t easy”.
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Sorry to hear about the latest news az. The medics have led you a merry dance these last few months – you must be finding it hard to know which way is up, never mind anything else. Hugs from Scotland…
…and definitely time for another game of Scrabble!
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Azahar,
Here are a few thoughts from a friend in similar circumstances whom you’ve never met. In fact right now I’m sitting in my chemo chair in the Cleveland Clinic, receiving my long infusion (folfox & cetuximab.) Soon I’ll be getting my 5fu take-home pump which, for the record, is not the worst thing in the world — I usually manage to forget about it.
So please forgive the unsolicited advice from someone who once taught ESL in Barcelona.
I’ve dealt with some docs whose bedside manner resembles your onx 1 & 2. The thing to remember is that your ultimate goal is to get the best treatment — these people are just the means & they’re doing a job. Don’t give their personalities more thought than they deserve.
Also, do yourself a favor and demand to have the port installed. I can’t see any need for a patient who is going on “maintenance chemo” (whatever that is supposed to be since it’s the same chemicals) to have to discuss pros and cons and fight for this. For almost anybody facing more than a few cycles, it is all pro. I have a so-called “power port” and it handles chemo and blood draws very easily. I don’t even feel it when I get stuck, I used it for a 7-hour treatment the day after it was installed, and it sure beats the hell out of getting stuck in the arm.
Biologicals? If your Kras is non-mutated, i.e. wild-type, as about 60% of people are, then you’d potentially benefit from cetuximab, a drug that works true magic in some people. No guarantee of course, but it sure worked for me in the neo-adjuvant setting & now I’m getting it as part of adjuvant therapy. Or, if you do have a Kras mutation, then maybe you could add Avastin to your new cocktail. Anyway, my onc would not consider a plan for my treatment without one or the other of these biologicals.
Listen, when I was first diagnosed & was crawling across the web for signs of hope, I was convinced that you were a special case, a unique person in an exceptional situation. An open-and-close surgery, followed by a biopsy that showed NO cancer?! Going from Stage 4 to stage 2? Your whole roller-coaster ride & your poised descriptions blew my mind and yes, I was jealous.
Once a rare & special bird, always a rare & special bird, I say. Something tells me that when you get your next chemo regimen straightened out (& properly delivered by a port) you’ll again have surprisingly good news.
Make us jealous again, por favor!
Jdepp.
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I wish I had something more useful to say that be strong, but I don’t. 😦
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Jed, what a lovely surprise to see you here! I didn’t know you used to live in Barcelona. El mundo es un pañelo.
“these people are just the means & they’re doing a job”
You know, that’s the place I got to this morning as I was formulating my Plan. Taking charge of when I start the chemo was the first step (no way would I be ready by this Thursday), which made me feel suddenly stronger and more in control of things. Getting what I need is the most important thing, and yes, that will include a port (though I have to admit the idea of a port kind of creeps me out).
I really should have pushed for them to start adjuvant therapy right after Christmas, especially after I read those articles you sent me, as clearly these new tumours have formed since the last surgery at the end of November. It’s frustrating to think that I would be finishing up now and probably tumourless if they had followed the usual protocol.
Apparently I’ll be on the same cocktail I was on last summer: Xelox/Oxiliplatin infusion and then Xeloda pills for two weeks.
Biologicals? Kras? I have a Kras? Honestly, I am so not up on the lingo. Must go and review Justsing’s terminology post again. I didn’t even realise I’d gone down to a stage 2 and had made you jealous.
“Make us jealous again, por favor!”
That is so sweet, Jed … I will certainly do my best. And hey, don’t be a stranger! Did you see that Gaelen is here too? (and we are both on Twitter now)
——————-
Quick note to anyone I’ve missed replying to specifically … thank you so much for being here. I really really really appreciate all your comments.
And now it’s time to make popcorn and watch House. Will be calling the onc tomorrow to set up a new appointment.
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Sorry to hear about this setback. It puts my whinny little problems both to shame and in perspective.
I wish you all the best, from deep in my heart, and I hope to be reading good news.
Best to you.
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Oh az!
Thinking of you.
TRiG.
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just a hug, az. i dont know what else to do.
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Okay…ditto on all the “wow I wish I could be there to give you a hug” comments…and the “thinking of you” ones…and I’m with the “slap the insensitive doctor” crowd as well. But I’m also shaking my head at the sheer number of people who read your blog who know such details about chemotherapy. (Whatever a Groshong thingamajig is, sounds like a good idea!)
Hugs and good wishes from Metro and me.
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:hug:
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Thinking of you here in Missouri also. geez Louize, your life is way more “interesting” than any roller coaster ride I’ve ever seen. I’m not sure that analogy is working any more.
Sorry my visualization didn’t work and you had two new tumors. But I’m betting on them responding to chemo the way the last ones did.
Get the port. That seems like a win-win situation to me, bearing in mind that I am Ms. Never-been-seriously-ill-a-day-in-my-life-and-never-had-surgery-either.
Sending you some of those “healthy person” vibes.
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Your candor about this whole process is nothing less than amazing to me.
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Don’t worry about being afraid or a so called wimp. Bravery is all about being afraid and overcoming that fear. If those around you call you weak, let them walk a mile in your shoes. We should perhaps form a group of those who have been maltreated when having cancer. My doctor who diagnosed my cancer told me I was going to die, shook my hand and wished me good luck! The irony? I’m older than he was and he dropped dead not so long ago on a treadmill in the gym. Is there a message there somewhere? As for tears, I cried a bucketfull and I like to think I am a tough offshore sailor. Stay with it, you’re doing alright and science is catching up on this illness, fast. Who knows, tomorrow this might be all over. Big hug.
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I’m very surprised you’ve not had a port-a-cath (or whatever you call them) already. Seems to be standard procedure here when you’re getting iv chemo.
When it comes to fear my tactic is that it’s better to beat it than to be beaten by it. Panic won’t help you. The times in my life I’ve panicked things just have screwed up even more.
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My thoughts are with you from Toronto. I hope the treatment goes well!
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Welcome Holly and Bazza … it’s always nice to meet someone new. 🙂
I’m not sure about my candour being anything special, Holly – it’s just the way I am. Also, I never know who’s actually reading out of the 400-500 hits I get every day. But if my story has helped one person decide to get a colonscopy (and early detection) then that would be amazing. And I think being as direct and honest about everything I’m going through sends the clearest message.
Bazza, thanks for the support. Thing is, I’ve been waking up afraid ever since I was a child (it long ago became a “chronic condition”) so when something else is added – like a scary cancer prognosis – I do get moments where I am quite overwhelmed and a lot of crying gets done. But yeah, I do end up facing the fears and getting through them as best I can.
I’m very glad to hear that your doctor was wrong about your prognosis. I’m not sure if I’m being “mistreated” as such, but I certainly don’t feel like I’m being treated the way I would like to be, and I know that at least some of that is up to me.
During my last appointment Dr Ana asked me several times what my expectations of my treatment were and (as I was busy crying) I couldn’t actually answer her. I’m still not sure I can answer that, but what I am going to ask her next time is what HER expectations are. Because I honestly feel like she and the other oncologists see a “dead woman walking” when I come into the room. My surgeons and the nuclear medicine team have always been very optimistic … not to the point that they actually say I will be “cured” one day, but they certainly think it’s reasonable for me to expect to live for quite awhile yet.
Anyhow, I have my next appointment with Dr Ana on Monday and my chemo will start Thursday. I spoke to her on the phone this morning and she said there won’t be enough time to have a port installed before Thursday, so my first treatment will have to be done by injection in the hand (aaarrgh). So it’s just as well I put it off a week because my back is still quite fragile and I need both arms to support myself when I stand up or sit down.
*waves to everyone* Thanks for all the hugs and good wishes.
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az, I’m so sorry it’s chemo again!! :hugs:
I wish they’d put you on it after Christmas, but they’re putting you on it now, so that’s all to the good.
I’m not totally in the ‘kick the doc’s ass’ camp, but she *should* have realized how shocking what she had to say would be, after the NED from a couple of months ago. I take the opinion that it would be massively depressing to have to deal with severely ill people over a decades-long career, maybe what you got was *her* coping mechanism? Ask Ricardo or Pilar how they cope with that aspect of their careers, and maybe you can read between the lines and see how to deal with her.
And get that port, don’t let them put it off — get it scheduled asap, before your second treatment. I had bad reactions to insulin for a while and used a small port for subcutaneous infusion of the insulin — it took away the injection pain, which was worth it to me.
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We’re around, az.
TRiG.
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Oh, az. I’m so, so sorry to hear this.
I’m sorry I’ve been so slow to comment, too. I read this on Wednesday, and was just floored by the news. Shortly after I was floored by a stomach bug (which hit me and Phoebe), and have barely been on my computer again.
But I have been thinking of you many times a day.
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And I’ve been thinking about you too, alejna. Saw your message about having a sick Phoebe, but I didn’t realise that you were sick too. Anyhow, I always know you’re there. *hugs*
I don’t think the nuclear medicine Team actually deal with patients after the testing is done, SC. Though they participate in the clinical sessions that decide which treatment is going to be done. In any case, I’m hoping to work on my relationship with Dr Ana. I mean, I thought she was great during our first meeting, but things were quite different last Monday. Maybe she didn’t like that I criticised some of her staff?
Still not sure who is going to come with me for the next appointment. I may end up going on my own (eep!).
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I just thought I should give a comment or 2 –definately get a port installed you will never regret it.
It sounds like you are taking folfax probably with avastin.
this is a great combo –however the oxiplatin in folfax give the cold sensation problems along with many others. You may want to switch from folfax to folfiri and either continue adding avastin or switch to erbitux ,
I have been on folfiri with erbitux for 18 wks. Started with colon cancer mets to liver. After 8 wks only 1 tumer left 7mm. After 16 wks NED. I am continueing for 6 more wks –PET scan in 2 wks for determination of NED.
This combination works and throwing a different combo may indeed strike out the cancer.
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Hi Don and welcome!
You have replied to an almost year-old post and so I can tell you that I did have the port installed (still have it in fact) and it made all the difference. I went through six rounds of Xelox (oxiplatin) & Xeloda, though I skipped the oxi in the last round because I had an allergic reaction in round five that shut off my windpipe (now THAT was scary!).
So I have been off chemo since the end of last July – the 6 rounds took four months to complete. Writing about it now, I don’t know how I got through it. I remember thinking at the end of it all that I would never go on chemo again, even if I got another recurrence (which apparently the doctors fully expect to happen at some point). But my last PET scan a couple of weeks ago was clean, so I’m “off the hook” about reconsidering that option until the next scan in April or May.
Re: the port. I was having a lot of right shoulder pain back in September and thought it might be related (the tube goes into the big vein on that side) and my onc made an appointment for me at the pain clinic, saying they would call me back with the appointment date. Yet another mixed up message from Dr Ana … the pain clinic finally called me last week (four months later!) saying I was booked to have my port removed the following day. Huh? I didn’t ask to have the port removed – I was just asking if the shoulder pain could be related and thought the appointment with the pain clinic was to talk to someone who understood ports better than the oncs. Anyhow… I told them at the pain clinic there had been a mistake, that I wasn’t getting my port out just yet, and that I would discuss it with my onc when I see her again in February.
I really don’t get it. The usual waiting list for a port is 3-4 months. I was lucky to find a sympathetic surgeon last year who squeezed me in almost immediately. During my last visit with Dr Ana she told me that my prognosis was the same (50-50 chance of surviving for five years) so why the hell would she arrange to have my port removed if she thinks I’ll be going back on chemo at some point? I would say that all this will be revealed when I next see her, but I’m not actually very optimistic about getting any clear information.
So Don, do you know about the Colon Club forum? If not, it’s a great place to get information and talk to people who are going through similar situations. I don’t visit there as much as I used to, but I still drop in from time to time.
Good luck with your next PET scan – I really hope to hear that it came back clean. Will you come back and let us know?
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