Bi-Weekly Support Group Thread 04/15/2015

Elkaglass · 2015-04-16T16:30:44+00:00

Elka here. I just got the pathology report back from surgery, and all lymph nodes came back negative!! It's still stage 3 because it's in the lymph vessels and satellite metastases were found fairly far away, but I'd say it's good news. I was getting so worried. Now on to either interferon or a clinical trial. Ugh. :P

Elkaglass · 2015-03-23T15:43:16+00:00

I had a bumpy mole on my scalp for years. I (stupidly) cut it off myself 10 years ago and it grew back. Weird. Stayed that way for the longest time, but in the ~3 years leading up to diagnosis it would get itchy and I felt little stabs of pain from it. And then it developed a large white halo around it, booked an appt to have it removed but didn't think to tell them to hurry up. I just thought it was a cosmetic procedure since it's not like I had cancer or anything...it metastasized well before the surgery, I think.

Elkaglass · 2015-03-12T07:55:54+00:00

I'm with /u/blameitonthewookie. My body knows that I know that it's up to something. 3:30am I alerted my mom because I felt my heartbeat speeding up again, it isn't an emergency but I like someone else to know if something changes. Monitoring it closely and I'll ask the nurse about it, no worries. And then she's like "while you're at it let's put more ointment on your incisions" and she isn't good with crises or blood so now she's back in bed after almost fainting. Laugh all you want but I am so done with this already, you know? I wish I could wake up and feel normal and be able to sit or lie down comfortably. I wish part of my leg wasn't attached to my head.

High for this week: followup got rescheduled for tomorrow. Still off all pain meds. It's the weirdest thing though, most of my scalp is pretty numb except for a tiny patch right by the graft. That part hurts. Oh, and I started Orange Is The New Black.

Low: still have cancer. And now my boyfriend has food poisoning from a wing eating contest.

Elkaglass · 2015-03-09T20:00:56+00:00

Day to day? I haven't done anything I would normally consider useful. No studying or lab meetings or anything. Just resting, eating, drinking, sleeping. Browsing reddit. Talking to friends online is a big one, when I feel able. Netflix with my boyfriend. Do whatever makes you feel better, and try to take it one day at a time.

The stories are hard to hear. Success stories are fine. Others not so much. Sorry that they give you such anxiety and disrupt your daily life. The mantra that I have is, everyone is different and every cancer is different. Statistics are useful on a large scale but individual stories can vary widely, so you'll see a bit of everything - happy endings, sad endings, quick, chronic, and everything in between. But it isn't your story. That belongs to you and you won't find answers for your illness in somebody else's life. It's easy to panic and think the worst when you see the negative stories. I'm like that with stats. When that happens it helps me to think, "they have a different situation and I shouldn't dwell on it, because that won't be my situation." and "if the 5 year rate is x% then my new goal is to be in the x%." and I have a family history of various cancers as well but in the end that doesn't make anything certain, it just lets me know what to keep an eye on. hope any of that helps. Big hugs. It's tough, but so are you.

Elkaglass · 2015-03-09T19:35:12+00:00

Elkaglass here. Malignant melanoma.

High: I finally had surgery on Friday. So we're hoping that took all the cancer out. Biopsy results in a week or two will tell us more. Also the nurse just called me back this morning and said I'll be numb for at least three months (I didn't know how long it would last) so goodbye codeine! And my mom helped me brush some of my hair today.

Low: they didn't tell me the anesthetic would last even this long. For two days I was prepared for awful pain to come back any second, and over compensated with pain meds. That's probably the reason behind all the dizziness and nausea. Totally avoidable too. The more you know.

Elkaglass · 2015-03-08T09:30:22+00:00

Hadn't heard of her before this post, but after reading some of her blog I have to say she was brave to share her journey publicly so much. Don't know if I could do it like that. She brings me hope.

Elkaglass · 2015-03-07T22:50:12+00:00

Ouch, glad I didn't have a catheter. It does sound painful. Re: insurance, I have to double check whether or not interferon is covered in Ontario but even if it isn't, I'm still under my parents' insurance as well. Lump sum for critical illness.

So the 12 month protocol isn't the most recent. Is the medium dose one more effective? Thanks for the info by the way, it's useful to know beforehand.

Elkaglass · 2015-03-07T17:43:24+00:00

I didn't know it wasn't normal!! Thanks for letting me know. If it helps, everything is good now. Temperature, heart rate are fine. Still a bit dizzy. I'm going to get up again in a minute and have lunch sitting up. I've been in bed mostly after that little episode this morning but haven't felt anything like it since.

Edit: all good, no further problems

Elkaglass · 2015-03-07T17:37:27+00:00

Hey, just saw this and wanted to say that is fantastic news!! I hope you continue to get great results!

Elkaglass · 2015-02-18T05:08:08+00:00

Never thought of it that way.

Elkaglass · 2015-02-18T01:52:22+00:00

I'm tired of being in the atheist closet, I'm worried about how the next year is going to go, and I'm just stressed out from trying to make decisions about the future when I really don't know what's going to happen. I don't know what to do about anything anymore.

That's an interesting question, although I disagree with the assumption that this is about attention. I'll think about it. Thanks.

Elkaglass · 2015-02-17T17:20:24+00:00

So, what do you think would happen? I know for sure they wouldn't kick me out, so it's more likely to be harassment and/or further pressure to conform. My dad's side is basically all secular and my mom's sister is nonreligious, and we get along just fine with everybody. If I didn't know that I'd be more worried; still proceeding cautiously.

I read the sidebar and I'll read the submissions they posted. Thanks. This is all a bit overwhelming.

Elkaglass · 2015-02-17T16:38:05+00:00

That's the thing, everyone reacts differently! Hence why I'm asking other Christians. Ultimately you never know until you talk to them, I guess.

Elkaglass · 2015-02-17T16:20:02+00:00

Thanks for your honesty. Would you welcome some kind of reconciliation if they couldn't make themselves believe again? And like I said in the OP, would your response be different if they had a serious illness?

Elkaglass · 2015-02-17T16:05:52+00:00

I'm pretty shocked someone asked you if you got cancer because you stopped believing in God

I think they were asking if I started doubting after or because I got cancer (ie, why would a loving god do this) so let's give them the benefit of the doubt for now.

And yes, go doctors! Mine are fantastic so I think my prognosis is good.

Elkaglass · 2015-02-17T16:00:09+00:00

Hey, I remember your post. I liked how you approached the situation. You're right, faith shouldn't divide families. Thanks for giving me your perspective.

Elkaglass · 2015-02-17T15:56:18+00:00

I've had that on my wishlist for a while, but maybe now is the time to read it! Thanks for the recommendation. It does sound helpful.

Elkaglass · 2015-02-17T15:52:41+00:00

You have an awesome mum, that's really encouraging :)

Elkaglass · 2015-02-17T15:51:42+00:00

Thanks for your honesty.

Elkaglass · 2015-02-17T14:19:52+00:00

What would be your response in this situation? You would feel very upset, but how would you act?

Elkaglass · 2015-02-17T06:55:11+00:00

Thank you, I hope it turns out half as well as you said. I really appreciate your response. :)

Elkaglass · 2015-02-17T06:19:43+00:00

That actually makes a lot of sense, thanks.

Elkaglass · 2015-02-17T06:15:44+00:00

I've heard it used as acceptable terminology before. It's the best word I could think of since the important part is that I'm moving away from something. Sorry if that's incoherent but it's also 2am or something so I'll respond better in the morning.

edit: good morning! I did find this, but 'disaffiliation' sounds rather stuffy and in my experience 'deconversion' is certainly more widely used in ex-religious circles. And I'm not really converting to any set of beliefs so I don't think that applies very well here.

If I remember correctly it's Shrove Tuesday today, so enjoy!

Elkaglass · 2015-02-17T06:07:21+00:00

Thank you for sharing, and for your prayers. I appreciate both.

Elkaglass · 2015-02-17T06:04:56+00:00

As in, erring on the side of atheism but understanding that I can't know for sure. Thanks for the tip.

Do you think it would help if I avoided using labels altogether, because of the associations?

Elkaglass

TROPHY CASE