The Cancer saga (was:Good thoughts to Glitch Cat and me)

[Glitch Girl]

[posted on G+ - didn't feel like writing it out again ]
So...  I went to see the doctor last week.  To find out about chemotherapy, something that was not in the plan, despite my repeated asking, until apparently AFTER I finished surgery.

I am told it is a mild dose, and only three treatments that are primarily precautionary, yet I'm still going to lose all my hair.

Those of you who've know me, know I have a thing about my hair - I've worn it long for a very long time and consider it part of my identity in a way.   Some of you also know that I had some scares a while back due to some mess-ups in my thyroid supplement and have been trying to grow back what was lost.

I am extremely frustrated now.  Every time I think this whole damn mess is over, it's not.  First it was the original diagnosis, then it was a lumpectomy and radiation treatment, then that got cancelled and upgraded to a double mastectomy but no radiation and no real followup, and now this (which also means no cat adoption for another three months since there may be side effects).

After talking to a few people who have dealt with cancer, I am thinking I need a second opinion - there seems to be some general agreement that there's something off about what I've been told.  And while I am extremely pleased with my plastic surgeon, I am less than enamored by my surgeon and oncologist.

So that's the latest update.

2012, the year that keeps on giving crap. 

[Tomato]

I will put it this way... as someone in the medical profession, I will tell you that some doctors will do more in the name of "just in case" than they should, often to the detriment of the patient. I often joke with my patients (I draw blood, in case I hadn't mentioned it) that if doctors had to have blood drawn for every 50 patients they have stuck, we'd cut down the amount of sticks ordered by half.

I don't want to discourage you from doing something if you need it, but don't let a doctor bully you into something if you don't feel it's necessary. Get a second opinion from someone who doesn't stand to profit from additional therapy, someone whose advice you value, and make your own decision.

[Cyber Burn]

With everything that I've been watching my sister-in-law going through medically , I definitely think that a second opinion is worth the look, especially if you're uncomfortable with something.

[lugaru]

I hope it all works out for you... last year was a little rough in that both my sister and a super close friend got cancer (breast and hodgkins respectively) and between the two I got to see pretty much all the side effects. Also my brother in Law had cancer two... testicular. All three are fine, and have been getting nothing but clean scans since then.

In other words Chemo sucks, but life after usually involves one great milestone after another.

[stumpy]

Sorry, GG. Surely that isn't the news you want to hear, about both the necessity of chemo and its side effects. Losing your hair isn't fun, and it's often particularly hard on women. If you have to, though, know that the people who care about you would rather have you than your hair any day of the week.

Obviously, no one is going to discourage you getting a second opinion. If you have doubts about the competence of your doctors, then find some you trust. This is your life on the line, some confidence in the people helping you keep it isn't too much to ask.

[thalaw2]

I agree with getting a second opinion...maybe even alternative treatments that are more holistic.  Truly sorry to see you're having such a terrible time.  Will keep up the prayers.

[Deaths Jester]

I go for the second opinion as well...something about the constant changes seems off and a bit disconcerting.  Seems almost like he thinks you might be xsomeone else each time he sees you..weird.

[Silver Shocker]

Sorry to hear you're going through this Glitch. Sounds like getting a second opinion might be a good idea.

[BentonGrey]

Well, I think everyone has offered you good advice already GG, but let me echo Stumpy.  If you do face chemo, remember the folks who care about you, and that their love and respect isn't affected by your appearance.  I hope you won't face that challenge, but if you do, I know you'll come through it well.  You remain in our prayers.

[Mr. Hamrick]

Hey GG,
Sorry to hear about what you are going through.  Wanted to share a couple of things that might give a little hope you to you.

1) My friend Cassie went through much if not all of what you are currently going through last year as well.  She not only did the chemo and dealt with the hair loss but once her hair started growing back (and it will grow back) she went back to her job sans the wing she had been initially wearing.  Get this, she's gotten a lot of compliments from the guys where she works.

2) This other girl, Erin, is a former roommate to my friend Valerie.  (Valerie use to be the guitarist for The Cruxshadows, as I know you are DragonCon goer.)  Erin as been dealing with cancer as well for almost two years now.  She has been keeping a blog to help people dealing with cancer and cancer survivors that might be worth a read. if you want the link, let me know.

If you are up against chemo as part of your treatment, and I hope you are not, just know that you are not alone in it.    I'm going to see Cassie this weekend and will see if she minds you dropping her a line if you'd like me to.   And well, you know there are people here who adore, admire, and respect you.  You are and always will be a beloved pilar of the FR community.  We are all here for you even if we are not always so vocal. 

Cheers. 

[Grendal_71]

I so wish this was the kind of thing where family and friends could take a portion of the illness and "share the damage" across the board to spare the suffering person from bearing so much.  Unfortunately, we can't.  I do wish you best, and can only echo the sentiment of others on this thread.  "Hang the hair, we care about you WAY more than the hair.  It'll grow back.  Do whatever it takes to get better.  Win."

[Deaths Jester]

I'm still waiting for GG to tell me about these scars..cause I'm interested...very, very interested!  Specially seeing as I now know she has long hair too.....hatcha!!!

[Glitch Girl]

Not any more DJ.  Read on...

So... since I last posted, I cancelled my first Chemo appointment in order to get more information.  I was feeling seriously blindsided by this whole thing and really needed just... more information  before I plunged in.

I have learned that I'm currently in one of the best cancer treatment centers in the region which is a comfort, though it meant getting a full diagnosis second opinion would require air travel in order to get something comparable.  I did talk to another oncologist out of state who was familiar with my current oncologist, and between him, several people who've been through chemo, and some online research I finally agreed that this is probably the best route. 

And then I got my hair cut.

It was sudden, and it was hard.  My hair used to reach past my shoulders quite a ways, though it has thinned in the last year or so due to a variety of factors (a big one being stress, go fig).  Now, it reaches the base of my skull and it feels... weird.  I've had long hair since I was about 9, and to suddenly not is going to take some getting used to.

Currently, it sorta looks like Trekker's hair, but with more at the base and a bit more 2010's than 80's. 

There's a new appointment with the oncologist on the 26th.  I suspect more talking.  I've got some new questions, and maybe we'll get this started before I lose my nerve again.

[daglob]

My cousin had to have chemotherapy, and she just said "Heck with it", and had her head shaved. Her husband was in Afghanatan, and apparently some other wives on base had decided to "go bald" or something in support of their spouses. She just kinda fit right in.

Not to mention the half-dozen or so women I see on a regular basis that have shaved heads...

...or my daughter's friend who had chemo, lost her hair, and when HER husband got back from deployment, he liked it... I mean really LIKED it...

Mostly just saying have courage, take care, hope and pray for the best (we can join you on that one),and keep a positive attitude.

[The Phantom Eyebrow]

Wow, I can only wish you all the best with this Glitchie.  It certainly looks like you're doing all the right things and I'm glad to hear you're at such a good treatment centre.  I know this is anything but easy but remember we're all rooting for you.

[Deaths Jester]

Ohhh....Trekker hair is sexy too....but yet you still won't say squat about the scar...*pouts*  Haven't I been good enough? 

Well, at the least, you are at a top-notch cancer center, so these folks "should" know what their doing (emphasis on should...don't get me started on the medical trade).  And to give you something good to think about, not all folks who have chemo lose their hair and you could just be one of those lucky ones!!!  Pulling for you, GG!!!  And if you need to borrow some nerves, I've got a whole bag full of them somewhere that I'm not using that you can have!!!

[BentonGrey]

Be careful of accepting second hand nerves from DJ, GG, you never know where they've been!

I know this has got to be tough, but the guys have good points.  After all, short hair can be really nice on a lady.  The important thing is definitely that you're in a good area and it seems like you are getting good care.  That is tremendously important.  This part may be tough, and  while there may be a lot more that is difficult ahead, we have no doubt but that you can do it!  As DG said, we're all pulling and praying for you!

[Deaths Jester]

Be careful of accepting second hand nerves from DJ, GG, you never know where they've been!

Hye their perfecctly fine, unused nerves!  Geexz...waht is it with everyone thinking I live in a gutter.

[Outcast]

Well, I've got an aunt who recently underwent chemotherarpy and she seems to be doing ok. Actually more than ok from what i've heard. ( I believe she's also taking some special Chinese medicine as supplements though.)  There's also this one client of ours at work, who had gone thru the exact same thing a few years ago. She too seems to be doing pretty well.

Having trekker's hair doesn't sound all that bad. Especially if you're one of those Star Trek fans i suppose. But i know it must be really tough having to deal with all of this (cancer) and I admire your courage through it all. Praying for you during this difficult time. Stay strong and try to think positive. Being in one of the best facilities is definitely a plus.

[Glitch Girl]

Outcast: Trekker is a web comic/comic book character.  There's a link if you're curious.

Update: Went to the doctor yesterday.  Chemo starts monday.  Between this and money issues, life is not good.

[Deaths Jester]

Outcast: Trekker is a web comic/comic book character.  There's a link if you're curious.

Update: Went to the doctor yesterday.  Chemo starts monday.  Between this and money issues, life is not good.

You got money issues too?  Welcome to the ever growing club of "We be Broke-Arse Superfolks".  With your membership you receive no actually useful objects or such, just a crappy little card that says, "I'll perform super-deeds for food."  Other than that, you become a member of perhaps the largest growing group of superheroes to grace Freedom Reborn.  Welcome.

All kidding aside, sound rough, if you need anything don't hesitate to ask either myself or one of the other many FR members, luv.

[Glitch Girl]

So.. April First was ironically Chemotherapy day 1, complete with a surprise...

I got there about 11:15.  Before every treatment, they take a blood sample to check your baselines just to be safe.  When they were about to take it, they asked me if I had a "port".  I have heard mention of a port once before, but never actually knew what one was except that I didn't have one so I said "no".  Blo9od was taken, time to trek off to the next waiting area.

At about noon I'm ushered back into the infusion area  ie: treatment.  It's a room full of cheap recliners with IV's set up next to them. This is because chemotherapy takes a long time.  More on that in a moment though, first we have to address ports again...

A port, I learn, is a device that's implanted in the patient in order for easy delivery of drugs and easy removal of blood samples.  Many cancer patients have them because of all the needles involved.  I did not have one (though there is something apropo of Glitch Girl having an installed port), which surprised the nurse.  There's immediate talk that I'm going to need one, that it's outpatient surgery, can be done today, maybe start treatment soon, wait what?!?!?! 

This is ALL news to me.  And it is not good news.  I explain that so far NONE of my doctors have mentioned this, that one of them probably should have and how much is THIS going to cost me this time? 

And I thought I was stressed going in. 

The nurse calls my oncologist, and after a brief discussion, learns that he did not recommend a port because I'm a) only getting four treatments total, and b) the treatments are of the mild variety, so a port was unnecessary.  This, thankfully is a relief.

After everything is sorted out, I get the overview of what the drugs I'm getting do, what are the side effects, and what's involved.  The possibly good news is that instead of total hair loss, I may (MAY) only have hair thinning.  Again, this is the mild stuff (well for chemo that is), but everyone is different, so it's still iffy.  Otherwise, it's mostly stuff like fatigue, lessened cold tolerance (like I had much to begin with), lower immunity, potential nausea, and some potentially dangerous side effects to look out for like fever, bruising, swelling, etc.

And then I finally get the IV.  Treatment lasts about 2 and a half hours, so I don't get out of there until 4.  While I'm treated, I talk to the nurse (who's actually quite friendly and we end up talking about pets a lot), and read ("The Long Dark Teatime of the Soul" was this visit's random book snatched from my shelf).  There's a TV in there, but it's daytime viewing and I can't get myself interested in it.  There are also snacks, and I end up munching on some Doritos and a Snickers bar and some water (there was soda too, but I didn't feel like it).  As you can see, such healthy snacks

For the most part I could only use one arm.  This wasn't because of any pain or discomfort, it's just that it seemed like whenever I moved the arm with the IV in it, I'd start alarm thing on it beeping.  I wasn't trying to move it much to begin with (needles creep me out) but even using it to turn pages seemed to be enough to set it off, so after a while I just said "heck with it" and got good at turning pages one handed.

I seemed to be take the treatment well.  Right now, I'm still a little tired, and my throat is kinda sore, but nothing major so far.  In three weeks I should be seeing some more side effects start to appear, but until then, it's mostly a just wait and see game.  In truth, except for the port scare, it went much better than I expected.

3 more treatments to go, one every 3 weeks.  Wish me luck.

[Reepicheep]

Well done, Glitchy. I'm glad it went somewhat smoothly, but sounds like a tough old day all the same. I hope things are ok in weeks to come!

[Grendal_71]

Thanks for the update, sounds like you're handling it well!  I hope you continue to feel well dealing the treatments.

[Outcast]

Outcast: Trekker is a web comic/comic book character.  There's a link if you're curious.

Oops!    Well, i checked the link and i personally don't think that kind of "trekker hair" is bad at all. I think some girls prefer that kind of boyish haircut look. Heck, even models would sometime wear them.

Update: Between this and money issues, life is not good.

Sorry to hear about your money issues though.

I can only imagine how scary all this can be for you. I wish there was really some other way to get rid of these kinds of cancer. Something else besides chemotherapy that is. Some natural way, like eating some healthy food and such.

Well, I'm glad that you were able to get through your first chemotherapy treatment with little side effects. I do hope this luck continues all the way till your 4th and last treatment. Keeping my fingers crossed for you. Good Luck.

Gonna send a prayer for you as well.

Oh, and i think it wouldn't hurt to try eating more healthy food/snacks too.

[thalaw2]

I'm so glad you're sharing this with all of us.  It really is very brave of you GG and very educational for all of us guys.  I'm surprised a hosptial for cancer woulnd't have things like seaweed, kale, and grapes (lots of grapes)...In herbal medicine these things are supposed to reverse cancer and they are healthy snacks so it couldn't hurt.

[Tomato]

Yeah, ports are something I see all the time as a phlebotomist... They're godsends for people undergoing serious treatments who have blood taken multiple times a day, who have constant need of ivs, that sort of thing. That said, it's not the sort of thing I'd recommend for patients in your situation... ports are typically inserted in a vein in the neck/collarbone area. Now in all fairness, it's not as painful as it sounds, and it's a more convenient area than an iv in your arm typically is, but it's still not something I would recommend for a few routine visits.

[Deaths Jester]

See GG, I told you it was all nerves and such before starting into chemo...I've seen that happen to a lot of folks but once their into chemo their not so bothered by it.  Here's hoping that other than feeling tired and a sore throat you don't get any side effects but if you do, we'll serve chicken soup to you!   

[Panther_Gunn]

we'll serve chicken soup to you! 

Coming from you, DJ, I'm not entirely certain about the "chicken" part of that sentence.   

[spydermann93]

Rooting for ya, Glitch!

Stay strong, and most of all, stay positive