Doc wants me to do the full 12 cycles

[AnnClare]

I had my regular onc check up today. He said that we COULD stop at cycle 10 (which will be this Saturday), but since the tumor and 2 lymph nodes still had cancer cells in them at the time of surgery, he'd feel better if I keep going, especially since I'm "doing so well" on FOLFOX. Ha. He should see me when I'm on the pump! Fussy, emotional, cranky . . .but I get it. I can tolerate it, I just don't WANT to.

I hated being reminded of the cancer cells that were in my body. Not that I ever forget about that (I wish!), but hearing him reiterate it out loud just made me feel sad. And angry at my body for short-circuiting on me when all I've done is try to treat it well. I don't want a recurrence, and while I know there are no guarantees, I trust my doc. If he says he'd feel better if I keep going, I'll do it.

Still, I'm disappointed and wish I could've just gone home rather than coming back to work. Then again, what good would it do me to sit home and cry in my proverbial beer, right?

On a positive note, my blood work was good enough that I can skip the Neulasta again this round. Yay! Hoping I can skip it all the way until the end as well.

[DarknessEmbraced]

Hope the rest of your chemo goes well and glad you don't have to have a Neulasta shot!*hugs*

[AnnClare]

Thanks for the support.

My struggle throughout this process has been mostly emotional. Sure, the cold sensitivity, fuzzy/burning tongue, grogginess & fatigue have been less than fun, but it's the mental and emotional aspects that have really throw me for a loop. The meds make me feel so down, and that's not like me.

Also, it would be nice if my sister had offered, just once, to come with me during an infusion. I would've declined her offer because there's no sense in having someone just sit there. But it hurts that she never even offered. I've had people who I'd consider mere acquaintances who've offered to go with me (and I've always declined). I know she went through hell when our mom was battling lymphoma. It hurt me, too, and in hindsight I wish I'd done more for her. (Sometimes I think I got "c" because I wasn't a supportive enough daughter during a time she needed it most.) There's no playbook for dealing with a family member in these circumstances. She's entitled to her feelings, but I'm also entitled to mine. I won't hold her lack of involvement against her, but I can't say it doesn't bother me. The rare times I text her with an update or just a simple, "Ugh - feeling so tired today," I get no response. I realize she probably feels helpless, since there's nothing anyone can do to truly take away what we're going through, but hell - it would be nice if she at least acknowledged I'm going through a s*** time.

This path we have to walk is so lonely. If there's one thing I'd tell people with a loved one battling "c" it's to be there for them, even it it makes YOU uncomfortable. I can't go back in time and be there for my mom, and I certainly hope I never know anyone else who has to deal with this mess, but if I did, I know I'd handle things differently. I'd offer to do whatever I could to make them feel less alone.

Sorry for going off on that tangent. I'm a bit emotional today . . . and I'm not even on the meds! Yikes.

[mike1965]

AnnClare,

I understand exactly what you are saying. I am in the middle of my 10th treatment and the hardest part for me has been the mental like u stated. I also have family members who have not acknowledged my cancer. I know it can be hard but I focus on getting better for myself. I look at the finish line and will fight thru the next two treatment. I want to do everything I can do to get rid of this evil cancer. When I first was dx, I did a wait and see approach and it did not work out well. Stay strong and fight this evil. I pray all goes well.

[patrickt]

Sorry that you need to do more chemo. Hope it goes well.

My mom (58, stage IV) just met with her doctor and was advised to do another 3 cycles of chemo. The initial plan was to do only 3 cycles. The doctor said something about doing 3 cycles, then surgery, then another 3 cycles, and now they're changing the order to 6 cycles then surgery.

Does anybody have a similar experience or idea why they're doing another cycle?

[MikeManess]

I was supposed to also do about 3 rounds of Folfox + Avastin and then have my 2nd surgery (2 mets in liver, one in lung), but the oncologist said I would do six instead. Now, he wants me to do the full 12, have surgery, then do more chemo. Ugh!

I've been very, very lucky. My wife always comes with me for chemo. She actually spotted me having an allergic reaction to Oxy, so it was stopped before the reaction became worse. She's always there, sitting (or trying to sleep) in that uncomfortable chair .. from 9am until 3pm. She's a marvel and has been soooo supportive. Family support is so important when you're going through having toxic chemicals pumped into you. It kills more than cancer, but hopefully it kills cancer before it kills everything else. I can totally understand how depressing it is to go into the infusion chair all alone. It would suck (at the very least).

The neuropathy, the cold sensitivity, the steroid crash, taste changes, aches, pains, mouth sores, fever, chills, diarrhea, massive weight loss, carrying around that damned pump, etc, etc, etc, I had no idea what I was getting into. 4 more rounds (I hope!) then I'm cut free of this curse for a while.

[Lydia666]

I understand about relatives, i've had some really sucky comments from the in laws and from friends.

[ANDRETEXAS]

Hang in there.....you can do it! My oncologist suggested I go for all 12....and I said - "Let's go for the gold." The numbness in my fingers is gone....and the neuropathy in my feet is still there, but much better. On a sad note, I found out my oncologist that turned me over to a new oncologist three months after my last chemo round died less than a month ago of pancreatic cancer. He was 42. I am devastated. He gave me the courage to finish. Best of luck to you. Andre

[AbbyDoo]

Hi Ann,
I know you had your hopes up to be done with chemo and I'm sorry you have to do two more.
I'm impressed that you have been able to keep working threw this. Two more infusions will go by quick and then you can say you gave it your all. You would feel terrible if it came back and would be wondering if two more would have prevented it.
Your so right about the emotional side of cancer. IT SUCKS and most people don't talk about.I don't think a person who never had cancer could understand.
I was always that tough guy who never showed emotions until cancer hit, it turned me into a whining little bitch butt it gets a lot better when treatment stops.
GO Out and do something fun. Go buy yourself something special.
Your a strong beautiful person.

[BeansMama]

I'm sorry you are having such a rough time with the chemo. Pushing through and giving yourself the best chance is the right decision.

I'm sorry you are also having issues with your family, some people just don't know how to handle it. Instead of dwelling on what they aren't doing try and concentrate on the people that are there and supporting you. Family isn't just about blood and dna. I have always been a firm believer that family is who you choose. I have a large "adopted" family. Many of them have been there for me more than some of my "DNA" family.

Try to stay positive, attitude is a major part of getting through this. You can do it!

I will keep you in my thoughts and prayers.

[AnnClare]

As always, I'm so thankful for the responses & support. The kindness & understanding y'all express brings me to tears. (I know what y'all are thinking: what DOESN'T bring me to tears these days, right? ) But seriously, the folks here are the best. So compassionate and understanding.

On an unrelated note, on my way home from work yesterday, I was at a red light and the vehicle in front of me started to make a right turn.I followed suit, then she stopped short, so I tapped, literally TAPPED her bumper. My little 11 year-old Civic against an SUV. When I tell you there was NO evidence on her bumper, I'm not exaggerating. My car got the worst of it. Thankfully neither of us was hurt (I didn't have my foot on the accelerator, just took it off the brake, so no speed involved.) Yet she's filing a claim with my insurance company. Sheesh. What a day. The Mr. was not happy with me when I told him what happened. (As if it was on purpose. Really dude? My car is totally driveable & I'll get the bumper replaced when the rest of my life has settled down into some state of 'normal.' Kinda have bigger fish to fry at the moment!) I'm beginning to think I expect too much from people & need to be more self-sufficient and not rely on or expect hugs & "it's okay" when the proverbial shiz hits the fan. I get tired of myself at times, so I'm sure those around me must, too!

Anyway, it was just a crappy ending to a rather crappy day.

The good news is that today I woke up feeling optimistic. It's a new day, and I've got some of my favorite, lovely clients on the books. Tomorrow is Tx day, and like the past 9 times, I'll crush it.

Thanks again, guys, for your words of wisdom & understanding. Y'all rock!

[Annemiek]

Hi Anne,
Idon't visit as often as I should anymore, and when I do, I mostly read and symphetise and don't really know what to say.
But, I so recognize what you are saying, on folfox every single time i felt like I was not going to get through it, that the world is coming to an end, that I'm not able to finish this. I planned my bloody funeral the first two rounds!
The folfox had a terrible effect on my hormone balance, causing me to become depressed. Although with anti depressants the effect dampened I was still very very sad.
Frankly my sister told me that if I ate more healthily, I wouldn't gotten in this situation because she hadn't.... And although on one hand she said she'd help, everytime she was either too busy or the kids were ill or... She didn't come to the hospital once during my chemo. It feels like a sort of betrayal that even after a year I still can't forgive her for, yes I still talk to her, but i will not be able to forget.
Only thing I can say, you've come far already, you can do this! Take it two weeks at a time, plan things to spoil yourself in the week without the pump. The last bits are definitely the worst, but you are almost The! Only two more! Count the days, do something nice every day that makes you feel glad to be alive, spoil yourself as much as possible, go easy on yourself.

Good luck!!

Annemiek

[AnnClare]

Annemiek - I'm so glad to see that you're NED - that's awesome!

Not to step on any toes where family is concerned, but I think it's positively unconscionable that your sister essentially blamed you for your diagnosis. There have been numerous people who've had impeccable eating habits and an overall healthy lifestyle who have STILL had to tackle this nasty beast. I can't imagine her saying that and my heart goes out to you.

ANDRETEXAS - so sorry to hear of your former doctor's passing. For some reason, pancreatic seems to be one of the worst, and most fast-moving. Not sure why that is. Seems once people are Dx'd with it, it's too late. How tragic.

Beans Mama & AbbyDoo - thanks for the cheerleading. I know I HAVE to do this, and that I CAN do this. At this moment, the whiny bastard it pumping away, giving me my much-needed meds. Yesterday afternoon my infusion, I picked up my husband's b.day cake (apologizing once again that his birthday this year was a dud, on account of my sucky, but temporary, situation. He says he just wants me to be healthy & not to worry about the b.day business.) Then I hit up a local chain drive-thru for chicken tenders & fries. About half an hour after eating lunch, I fell asleep sitting up on the sofa. Sheesh. This stuff knocks you down. I think it was the Ativan crash. I slept off & on most of the afternoon. No worries as I imagine I needed the rest. Still a little tired today, but it's manageable. No strong, crazy food cravings like I'd been getting while 'juiced,' but that's fine by me. Had some eggs & toasted sourdough bread for breakfast - yum - then coffee, of course.

Enjoying a lazy Sunday at home. Ahhh.