… I seem to be on the mend.
After I got my pre-chemo bloodwork done yesterday morning I stopped by to see Ricardo (of The Team, and head of nuclear medicine). He told me that my latest PET scan had come back normal, that there was no sign of the two tumours they had seen in March. I’ll find out today when I talk to Dr Ana what they have in mind for further treatment, but it will probably mean completing the last two rounds of chemo, and after that …
Really, it’s anybody’s guess. It looks like I’ll be heading back to NEDville* and will go back on “wait and watch” in August, getting tested every three months after that. Apparently they don’t want to do more surgery and so, unless something shows up again on one of the tests, I can breathe easy for awhile.
So I am okay … for now.
And no, I am not being negative when I add that bit at the end of my sentence, though I have been chided today several times for not being “happy enough” about my good news and for even remotely suggesting that I might have another recurrence.
I’m actually more relieved than happy. And trust me, nobody wants to believe that I might be “cured” more than I do. Which is why I can’t just believe it. Which is why I remain cautiously optimistic. And which is why I feel so lonely at times. Nobody wants to hear about what I really think and feel, they change the subject if I go on too long about cancer stuff, they get impatient with me for constantly feeling like crap. Ricardo asked me today how I was coping with the chemo and, after a few false starts trying to think of a way to describe how awful it is for me, I finally came up with “I don’t feel human”.
I hate it with all my heart and on Thursday it will take all my will to get me back in that fucking chemo chair. To let them pump me full of poison again and then make myself swallow poison morning and night for two weeks afterwards. I have six more weeks of this hell, and then I will find out how long it takes the side-effects to stop. No, you do not suddenly go back to normal when treatment is finished. I am aware of all of this and I am trying to deal with the fear so that it doesn’t overwhelm me. And meanwhile, I am trying to appreciate every precious moment I am alive.
It’s going to take some time for me to get the balance right. But it’s really not my responsibility to make other people feel better about my illness by pretending in front of them that I think everything’s gonna be alright and then going home and crying my heart out. And I don’t actually have face cancer, so I also wish people would stop telling me that I “don’t look sick”. Sheesh.
Will update later when I speak to Dr Ana. Not expecting any big news after talking to Ricardo, but there may be some further developments about the treatment. I’m going to hate having to go to the hospital. My stomach will turn when I hear the chemo IV machines beeping. I will try to keep my thoughts straight and consult my list so that I don’t forget all the things I want to tell Dr Ana. And I will feel very relieved that, for at least the next six months or so, my life won’t appear to be in any immediate danger.
Then I will come home and play with the cats, and what they will see is the happiest face in the world.
*NED = No Evidence of Disease
casa azahar 
That’s the great thing about cats – they just see that you love them and that you’re there, and that’s enough for them. No platitudes or questions.
Cat: “You’re not feeling well? Okay, hairless biped, have a seat here. Make yourself comfortable. I will assist you by availing myself of your lap. Now, it is most important that you don’t move for at least an hour. And then only to bring us both tempting food treats.”
Very glad to hear the nasty chemo is at least working to get rid of the tumours, though.
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Ok we really are paddling the same boat. I had a clean CT and will be finished with chemo in August, too, and heading straight for WatchnWaitville. Cautious optimism is about the best we can hope for – ignore anybody who asks for more. Tell them if they want effervescence they need to use a coupon for free tapas.
Well, ok, one difference: instead of a cat, a mellow scottish terrier.
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I think that’s the thing that people so rarely grasp about intensive medical treatment: “don’t feel human” nails all my instincts about it.
The cats, however, probably figure you are a large and vaguely backward cat who needs to have mice caught for you.
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Sunny definitely does the lap thing, woo. And of course I never want to move or disturb him since he only gets about 16 hours of sleep a day, poor thing. Azar isn’t a lap cat but gets very demanding about his snibbles, pushing “annoying” to the max by meowing incessantly until his needs are met… then he goes all cute and makes me laugh. I swear he gets that me laughing is a good thing.
Jed, I’m so glad you’ll be done in August too. Somehow I thought you were having to go on longer than that. I honestly don’t know how you’ve managed to do so many rounds. Needs must? I guess until we are there we don’t realise how much we can take, but you have certainly been an inspiration and also just a pleasure to read. Still planning that sabbatical abroad?
Not vaguely backward, Sled, but I do think that they have recently been impressed by my napping skills.
Oh, and when I said “nobody wants to hear about…” I must exclude Nog because he’s heard it all ad nauseum and continues to be very patient and as understanding as he can be. The best thing is that he just lets me talk until I get it all out of my system, and then will listen to it all over again a few hours later if necessary. Sometimes I just have to say how I’m feeling out loud or I feel I might burst.
Well, after three hours sleep I am going to drag myself to yoga and then it’s off to the hospital again. Still looking for a “hospital buddy” for chemo tomorrow. Nog can be there for part of it but will have to leave for a couple of hours to teach a class. The buddy system seems to be breaking down with time…
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I know what it’s like to stop on the sidewalk in front of God and everyone and weep because you cannot remember what “well” feels like. Some of us will not get impatient with you, however you feel and however often you feel it.
Trust me, even when the docs say “no sign of cancer”, it takes quite a long while before you stop feeling like you’ve a ticking time bomb inside you. But you will. One day when you least expect it, you’ll find yourself thinking in terms of future.
I wish you better days. And years. And loves.
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I don’t really know what to say – there’s the happy side, and the side that fully understands (well as fully as I can considering everything) the need for any optimism to be tempered with caution.
At least there is reason (and damn good reson) for that optimism though.
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This sounds like (potentially) great news az – me and my little dog are clapping our paws, while keeping them crossed at the same time…oops – now we’ve fallen over – next time we’ll do the actions in series, not parallel…
P.S. It’s your turn at Scrabble 🙂
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Nobody wants to acknowledge pain and suffering, it seems to me, especially when it’s someone who is close. My dad, who felt pain for most of his life because of arthritis and various other things, told me repeatedly that pain was ‘natures way of letting you know you were alive’. I have to respect where he was coming from but I do have to call Bullshit on that statement. I think we reject that someone is in pain because internally we don’t want them to suffer, it’s our way of trying to negate that pain. Stupid, eh?
Anyway, I do feel a tiny bit of that pain and suffering that I allow myself to feel and I acknowledge it. I also feel hope and happiness that it may be lessened now.
Take care and stay well.
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Oh, it’s the old good news bad news thing yet again. I’m so glad that your PET revealed NED. But at least this time the team is not going to decide to stop treatment and thus allow whatever remaining hidden cancer cells to land and set up housekeeping in your liver again. Perhaps after you have gone through the whole series of chemo this time you will actually continue on the NED path for good.
I have a great deal of empathy and compassion for you and your situation, and yet as I read this and the comments of the other cancer survivors/experiencers that visit here I realize that I have NO CONCEPT of exactly what you are going through. As you talk of forcing yourself to take poison twice a day for two weeks after your chemo, it makes me really stop and think about exactly what that must be like. People do take poison, they even try to kill themselves with it. How must it be to have to ingest it in order to survive in the long run? It must feel so completely contradictory and wrong. And the huge array of side effects . . .
I’m glad you have cat therapy available to you and a supportive partner, and I’m also glad that you don’t have to worry about money for the nonce while you go through all this.
I wish there was something I could do other than type platitudes and send you moral support.
If nothing else, your experience is a reminder to me to live my life to the fullest of joy, because we never know what is in store for us tomorrow.
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At the risk of running on… I think one reason people don’t want to hear how you feel is that they want to preserve their denial about the idea that something this painful and scary could happen, especially to them.
Which I suspect is a fallacious position because I tend toward the idea that time and space and consciousness are all more fluid and permeable than we are generally equipped to recognize, and that everything that has happened to anyone (or will happen) has happened to us all already. We simply aren’t sealed off from whatever any human being can experience.
That doesn’t mean I am any more poised about idiots or bad luck than the next person, but it does remind me to think that whatever someone is dealing with, I ought to be able to deal with by proxy.
And as for non-local mind, whoa-doggies, the Net has lit it up for us, no?
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Well, it looks like I’m back to DIY healthcare. When I showed up for my oncology appointment this morning the PET scan report wasn’t in the computer files yet so Dr Ana asked me what Ricardo had said. When I told her the scan had come back clean she said that I could do one more round of chemo and then finish. I asked her why only one more when she told me earlier that I would be doing 6 rounds in total, to which she replied – “Oh, did I? Okay then, you can do two more”. Duh?
So basically it was left up to me whether to do one or two more rounds, and I think I’m going to opt for two. Because, as much as I hate this fucking awful chemo, it might make a difference in cleaning up any stray cancerous cells that may be still hanging around. At any rate, my next infusion is tomorrow and so I still have time to make a final decision about doing a 6th round or not.
“it takes quite a long while before you stop feeling like you’ve a ticking time bomb inside you”
Given that I’m stage IV I reckon I won’t feel out of immediate danger until I’ve passed the initial five year hurdle, Anne. How long did it take you? Meanwhile I will try and get better at staying in the present.
“If nothing else, your experience is a reminder to me to live my life to the fullest of joy”
Glad to be of service, hmh. 🙂
“Nobody wants to acknowledge pain and suffering, it seems to me, especially when it’s someone who is close.” (zoomer)
“I think one reason people don’t want to hear how you feel is that they want to preserve their denial about the idea that something this painful and scary could happen, especially to them.” (Sled)
I think you’re both right. There is both caring and fear involved when people shut down or try to deny what’s really going on. The trouble is that the sick person is also afraid and often unable to express what they need, especially at the beginning. It all comes down to communication. I’ve really learned a lot this past year about dealing with fear and also dealing with the way I am treated. The abused child background used to make it almost a guaranteed thing that I would blame myself when people treated me badly. These days I am much better able to see the difference between people who care and those who just say they do.
“At the risk of running on…”
Oh please do! I love it! And I have really appreciated all of your comments here.
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Sleeping on it and having dreams about it and tracking down your intuitions — I think of them as faster-than-light thought processes — seem like the only way to really manage medical vagueness like that. Ag!
I get the hunch you are strong enough to cope with whatever the medication does to you if you go the whole length, and astute enough about your body’s reactions to know if you need to change a plan.
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“have been chided today several times for not being “happy enough” about my good news and for even remotely suggesting that I might have another recurrence.”
Considering your experiences with “good news” prognoses (prognosises???) I don’t think anyone could blame you for being a little reluctant to call out a marching band and buy a float….
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“a little reluctant to call out a marching band and buy a float….”
But if you did, it would be something to see…
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When someone scolds you for failing to leap with joy at the prospect of two more rounds of chemo and five years of uncertainty, just do what I did.
Stare at them silently for a moment, and then burst into theatrical tears.
The satisfaction of knowing how much they’ll hate themselves as they lie awake in the dark is not to be underestimated.
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If I actually let what they said get to me then the tears wouldn’t be theatrical, Rain. I mean, I get that people can feel uncomfortable around sick people and often don’t know what to say, but this kind of denial thing seems all about them, and making my illness all about how it affects them.
Frankly, if people don’t really want to know how I’m feeling then they shouldn’t ask.
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Well, both the “good news” and “bad news” have been a bit hard to swallow this past year, Mudhooks. I was talking to Agustín about this yesterday (during my one class of the week) and he totally agrees with me. And, being a doctor, he had some very interesting things to say on this topic. Oh, and totally off topic, here are some of his photos from Casablanca and Marrakech that I helped him put up on his blog the other day. I so want to go back to Morocco!
“As you talk of forcing yourself to take poison twice a day for two weeks after your chemo, it makes me really stop and think about exactly what that must be like.”
This is something that I find very difficult to put into words, hmh, but it’s really one of the worst things I’ve ever had to do. I mean, once I drag myself to the hospital for the infusion I have more or less given myself up for the duration. But those damn pills! Hateful things.
Just having coffee now and will have to leave soon. Today’s appointment is at 8.30 so I will definitely be splashing out on a taxi both there and back. And it turns out that Flor is able to come and “fill in” when Nog is away at his class, so that’s really good news. The idea of being there alone does not bear thinking about.
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Live update from the chemo chair! Been playing Scramble with Nog and am seriously considering making this my last treatment. Once again I am the only person I can see with a port and it makes me wince looking at all those IVs in hands.
My port us actually hurting a bit but the nurse insists that it’s set up properly. So far I’ve been given the anti-nausea meds. Ah, the nurse is back and hooking up the oxiplatin. Preparing to start feeling awful…
No sandwiches today. Had to leave very early and there was no time. Threw bag of Nog’s mini Kitkats in bag on the way out. Don’t really like chocolate but might need a sugar boost later.
Feel like throwing up…
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This. Is. Pure. Hell.
I think I am done with chemo after this round.
In bed with iPhone. All previous side effects are there but MUCH worse. Unbelievably awful. Agustin thinks I had an allergic reaction. Tongue was very swollen and at one point my throat seized up and I couln’t breathe. Scared the hell outta me.
Fingers and toes are very painful. Feel nauseous. Also feel very cold, which is ridiculous given today’s temperature. Chest also hurts. Eyes are aching. I smell disgusting, like onions marinated in Lysol, but the cold sweats seem to have stopped. No fever. Exhausted but not sleepy.
Enough already.
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I have nothing but respect for anyone who can come up with the simile “onions marinated in Lysol” while feeling that unbelievably crappy. Here’s hoping some sleepy mojo kicks in while you can use being knocked out.
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They gave me some tranqs but Nog has them in his briefcase and he is out teaching now. He made me some chicken soup before he left (the packaged stuff) and I”ve just had some. First food since toast at 7.30 this morning. The warm liquid soothed my throat. When I try drinking room temperature water it feels like I have a big shard of glass stuck in my throat.
Clearly my chemo tolerance is diminishing. Nursemyra will remember that after my very first chemo infusion we went out for tapas. The side effects didn”t hit me til the next day. Lately I can barely make it out to the taxi after the infusion.
Anyhoo, time to close my eyes again, perchance to sleep.
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Az, you definitely had a reaction to this treatment (been there, done that, shoulda put it on a t-shirt.) Sweetie, it’s great news about the PET scan. Give yourself a couple days to get clear of this round, and then make your decision…but if they’re willing to monitor you aggressively, it would make sense to at least remove the oxaliplatin because of the reaction.
My cat and dogs used to be particularly concerned about me when the temp was over 80 and the humidity was 70% or more–I love them all dearly, but that’s why they’re all crated right now. M. likes to sleep on my head when she’s worried about me…and except for the limits that puts on my breathing, she’s quite a comfort. 😉
My strongest thoughts, kiddo.
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Az,
I agree with Gaelen – it sounds like a bad reaction to this round. I also would advise you to wait a few days before making the decision about the last round — you might always ask to get it a week later.
I’ve been ready to stop or delay treatment a few times during the hard moments. And yet (maybe because I read too much Nietzsche) by the time I get into my good week I’m usually ready to face it again. You might be, too, especially if they’re willing to reduce or remove the oxi.
Good luck with this, whatever you decide. We’re facing the same dragons & we’ll defeat them.
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I wonder if they changed something this round and you had a reaction to whatever it was that was new, because this doesn’t just sound like the (to be expected) escalation of effects. This sounds like something quite different.
And yes, wait a few days before making any decision. You can’t let Chemo Brain decide the course of your life in the heat of the moment.
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Hang on, honey – and whine,, cry and yell as much as you please.
Being the cynical person I am I still think the cure must not be worse than the disease. If you think you’ve had it, then skip the remaining ones.
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I can’t know what you’re going through – even if I had had similar treatment it would only give me an indication, but everyone has opinions, me included.
Always your decision though. What YOU decide today, YOU can change tomorrow if you want.
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