Done, Done, DONE!!!

I'm all done with chemo!  I feel like I should be even more excited about it.  Oh, I am excited, but I should probably be in tears or shouting it from the rooftops.  I guess my mind is already focused on the next step.

Anyway, I thought I'd go through a typical chemo day so you could see what my past 5 months of Thursdays have been like.

Around 9am, I'd arrive at the Vince Lombardi Cancer Clinic, (thank goodness I'm a Packer fan), check in, give them my birth-date, and get my wristbands.  I now have a collection of hospital wristbands that I'm going to do some sort of project with.  Any suggestions are welcome.  Then I'd sit in waiting room usually being forced to watch Fox News.  Yuck.

I'd get called into the first room, step on the scale, watch my weight go up pound by pound every week, try not to get depressed.  Then I'd get my blood drawn.  This is done through my port and this is the needle that they'd stick into it.

Oh, it's just a little needle, right?

The skin over the port would be numbed first and then after taking 3 deep breaths, they'd pop this nasty-looking thing into it.  Blood would be collected and taken to the lab.  Of course, I'd have to verify my birth-date again.

Off to room 2 where another nurse would take my temp, get my blood pressure, pulse and blood oxygen levels.  After that, I'd be hit with a barrage of questions about side effects.  The same questions every week.  "Have you had any nausea, vomiting, night sweats, dizziness, mouth sores, joint pain, back pain....." The questions would go on and on and so would my answers.

Thankfully most of my answers were "No" instead of "Yes".

Then I'd wait for either the doctor or the nurse practitioner.  Sometimes a short wait, sometimes a long one.  He or she would come in, ask me how I'm doing, go over any side effects I said "Yes" to, answer any questions I had and then check the bloodwork results.  Thankfully there were never any major issues, my white and red blood cell counts were usually in the normal range or just outside of it, so things could continue normally.  Sometimes I'd get a bit of a physical exam, sometimes not, and then they'd shoo me off to the other side of the center to get my chemo.

I'd pick out a seat.  Their chairs were very comfortable.  (I wish I had remembered to snap a picture.)  They were recliners with heat and massage.  The massage vibrations were a little much for me, but I always had the heat on.  Once I unloaded all of my stuff: work computer, Kindle, phone, earbuds, snackage, either my husband or I would go grab some water and a little snack from their commissary area, and then I'd settle in.

My view

Once the nurses got the green light, they'd hook me up to the IV.  The same port and tube that was used for the blood draw would be used to plug the IV into.  There I'd sit for 2-3 hours, getting fluids, steroids, Benadryl and toxins pumped into me, while working and listening to music or watching movies.  (Oh, and they'd have to verify my birth-date once again when the chemo arrived.  I swore I was just going to get it tattooed on my forehead.) Sometimes I'd have that on one side of me and a blood pressure/pulse oximeter on the other side.  Talk about multi-tasking!

My Thursday partner

Chris was with me for almost every session, but on the last day, Xander came along as well.  That way he could see what I did every week.  He thought it looked pretty relaxing.  I suppose it was if you didn't think about it.  There we sat, all on our own Kindles watching our own things.  Eh, it made time go by faster.  I was ready for it to be over.

When my last visit was all over, the staff came out applauding and presented me with this certificate.

There were hugs, there were tears (not from me, but from the lady next to me who still had 6 weeks of chemo to go).  And I left the chemo section, hopefully never to return again.

The End!

Now, on to the next adventure....surgery.

Decisions, Decisions

Well, I went to visit my surgical oncologist yesterday.  It was the first time I'd seen her since January.  She was amazed at how much hair I have.  I guess this isn't normal?  (Eh, since when have I been known as normal anyway?)  The great news is that after she examined me, as someone who does this all the time, knows exactly what to feel for, and is extremely skilled, she couldn't feel anything in there.

She's not going to bother ordering any more imaging since all the tissue's going to be taken out anyway.  So, that takes care of those pesky tumors, now onto the even peskier lymph nodes.

Damn those things.

Damn them all to hell!

Okay, okay...back on topic.

Well, because of a few different factors like that there were two that were affected (who knows if there were more) and because of my young age (remember that - young) and I have many, many more years at risk of recurrence, they think that radiation is the way to go. 

Darn, okay, fine.  I basically expected that, so let's schedule this and get it over with.

But wait, there's more!

Because this is such an awesome hospital and a teaching hospital and they're always looking to advance health care, they told me I'm eligible to be part of a clinical trial.  Back to the lymph nodes!

Standard of care would be to have my mastectomy and because those nodes tested positive, the whole string of nodes in my armpit would be removed.  This is called an axillary node dissection and it can cause a little nastiness down the road.  Taking those out of there gives me a 30% (or more with radiation) chance of Lymphedema which is highly unpleasant and I reaaaallllly don't want it.  There's too much for me to post on here about it, but if you click that link, you'll get the idea.

Now, with this clinical trial, I might not have to have that risk.  See, they'd test the nodes during surgery and whether they turned out positive for cancer or not would throw me into a whole randomized flow chart of possible treatments, 75% of which do not include this part of the surgery.  One of which doesn't even include radiation.

Wow.  This is a lot of information to process.  Especially when you have 4 different people come in and explain more and more to you.  Our minds were not prepared for this overload.  Choosing the option where the risk of lymphedema is lessened certainly sounds like the easy yes, doesn't it?  Let's throw in a couple of other factors to shake things up, shall we?

Because this is a clinical trial and therefore a scientific test, all testing must be done in a controlled environment.  (Remember your middle school science?)  This means that all radiation must be given at the hospital.  This would not be such a huge issue if the hospital wasn't 45 minutes away from us.  Oh - I never said how many times I'd have to go there: Monday-Friday, every week, for five weeks.  That means driving 45 minutes to get there, staying there for 45 minutes for my appointment, and then driving another 45 minutes home.  That makes....ummmm....damn math.....2.25 hours every weekday spent dealing with these appointments.  It would be so much less time consuming if there was a closer facility that could do the treatments.

One other factor: Because it's a clinical trial, my form of treatment is drawn at random.  I won't know what's going on until I wake up from surgery.  I could have nodes, they could be gone, I could be done with treatment, I might have to continue.  Who knows!  It's a crapshoot!  I kind of like knowing things ahead of time so I can mentally prepare.  There's no, "Surprise! We had to take out your spine too!"

 (No, that's not one of the options.  I just couldn't think of anything else.)

So, now we have to decide whether to be a part of this trial or not.  Do I take my chances with the treatment roulette wheel or do I go down a planned path?  If the facility was closer, this would be a much easier decision to make, but $750 in gas and a whole lotta miles put on our car isn't anything to sneeze at.  We wish they'd just tell us what to do.  Trying to make important decisions like this with chemo brain just isn't fair.

Update:  My doctor's nurse called and found out that the radiation treatment places that I would be referred to if I went the regular route are all at least 40 minutes away from me.  I guess there's no fast and easy in-and-out radiation plan for those of us in ho-dunk small town Wisconsin.

Jiggly

Before I went up to Milwaukee for an appointment with my surgeon (I'll post a long one about that tomorrow), I went for a nice long brisk walk.  The since I can't run, I'll walk as fast as I can kind of walk. 

 No. Just...no.

Anyway, as I was walking, I noticed that there are parts of me that jiggle that didn't used to.  This is not cool.  Thursday and the last dose of steroids can't come soon enough.

Speaking of jiggly...

One To Go!!

My final chemotherapy treatment is next week.  I'm so excited!

If I wasn't so tired from only getting 4 hours of sleep last night (thanks again, steroids), I'd be dancing around my office.

I'll do this instead.

Ha!

I don't watch Bob's Burgers, but I found this extremely amusing, especially given my current situation.

Wishing for Chemo Brain

I am on today!  My brain is functioning almost perfectly.  I can form coherent sentences.  I can type without three-million typos.  I'm even multi-tasking, for crying out loud!  I just wish my mind wouldn't multi-task quite so much.  Oh, I'm still focused on what I need to be, when I need to be, but on those off moments, it's going into twenty different directions and I have too many things on my mind.

Don't get me wrong, I'm not in doom and gloom mode.  No thoughts of my own mortality, no planning the perfect memorial service.  No, that's not what I'm talking about.  I'm not low.  I think it's just that I've been on auto-pilot for so long, going through chemo treatments with nothing to really think about in the meantime, that now that I'm at the end, I have things to think about, questions to answer, plans to make.  It's all kind of hitting me at once.

I see my surgeon again next week.  I haven't seen her since January, so it's kind of for reconnecting, seeing how things are going and getting surgery scheduled.  Oh!  How nice it will be to finally have that date firmed up.  I don't know how many times I've said, "I'm due to have surgery sometime late July/early August, so I'm not sure I'll be able to..."  Our summer has basically been in limbo.

With surgery come more decisions and questions.  Will I end up having to have radiation?  The kind of reconstructive surgery I choose to have hinges on the answer to that question, and I probably won't know the answer to that question until I actually have my surgery.  How's that for a puzzler?

If I do end up having to have radiation, how am I going to fit that into my work schedule?  It's every day for 3-4 weeks as far as I can tell, and this lovely place won't allow you to take a few hours off here and there - you have to take a full 8-hour day.  How is that gonna work?  Am I going to have to cut my hours?  Work without pay for a week or two?  That should really help cover the medical bills.

Then speaking of work, I got my annual glowing review and raise and came to find out that with this raise, I've hit my wage cap.  No more raises for me unless I get a non-existent promotion.  There's nowhere up for me to go in this position.  My boss and I are going to try to think of some way to make it happen by the time next year's review happens, but maybe it's just another kick in the booty for me to find something else....which I was looking to do until all of this happened.  Then I had to stop everything and concentrate on...oh...living.

Another way to keep myself living is by eating better and taking better care of myself.  I've already talked about getting back into running again, and how I can't wait to start.  We've also been eating smarter.  No more refined sugars or processed foods.  Well, we've cut back by about 80% anyway.  I've found some really great recipes that we've all enjoyed, but I need to find more.  Need to make menus.  Need to make shopping lists.  Need to prepare snacks ahead of time.  I'm running out of time this week!

And then I remember this great dream that I had last night.  I had long hair again, I weighed less again, I felt great.  I woke up, looked at myself in the mirror and found Uncle Fester staring back at me again.  Ugh!  I just want to feel attractive again.  It's not just vanity, it's self-confidence.  I know it's gonna happen, but I think I'm impatient.  With this one I know I still have a long way to go - not only because of the hair but also the reconstruction.  That's going to take some acceptance and getting used to.  Oh, my poor husband.

And then there are other things that fly in and out of my thoughts: friends, people I haven't seen in a long time, decorating our living room the way we want to, getting our son ready for high school, planning some sort of "pay it forward" bash for my birthday, vacation, things to do over the summer...once I know what my summer schedule is going to look like.  It all goes around in a circle like that.

Trust me, I like - no, LOVE - having a good brain day, but maybe if they happened more often I wouldn't have so many different thoughts hitting me at once and I wouldn't be wishing for chemo brain instead.

The Right to Bare Arms

When my boss started picking on me telling me my hair was coming in grey, I defended myself saying that it's not gray, it's a very fine blonde...just like the hair on my arms.  So, I look at my arm to show her and noticed that I really don't have nearly as much hair on my forearms as I used to.  It's just a ragtag bunch of little fine hairs that seem like those little spruce trees in the Alaskan tundra - short and widely spaced.

It doesn't bother me - I'm just wondering when this happened.  Was it during the cooler weather when I was always wearing long sleeves?  Did it just happen recently without me noticing it?  Here I thought I was keeping up on things, but now I have this mystery.

Oh, and no - my hair is not grey, it's just very fine and mainly blonde with grey hairs in the same places they were coming in before I lost everything.  (It's much easier to tell when I'm not right underneath these lovely fluorescent office lights.)  This means I'll have to start coloring my hair the same way I had been planning right before all this shit went down..  So there.

Baby Lashes

The return of hair continues, slowly but surely.  My eyelashes are beginning to grow back in.  Yay!  I never lost all of them, but they certainly were sparse.  I was brave and looked closely at myself in the mirror and noticed little baby eyelashes beginning to fill in the holes between the lashes that remained.  Now the only problem I'm having is that the top and lower lashes like to get tangled together and I have to keep separating them.

It's a small price to pay to make sure these fellas have a good home again.

Have You Ever Been Mellow?

Let's see, what shall we talk about today?  Ah, blood pressure.  That's a fun topic of conversation, isn't it?

Most blood pressure issues that I hear of are due to it being too high.  Well, not me.  I'm so dang mellow that mine has always run on the low side.

Now because of the chemo it's running really low and I have to be sure to drink a ton of water and eat plenty of salt so it doesn't dip too low.  If I haven't had enough water, I feel drugged.  Foggy, heavy, out of it.  Pair that with a chemo brain day and I'm a waste of a human being.

Now if you'll please excuse me - I need to go get my 6th cup of water for the day.

Happy Happy, Joy Joy!

Only 3 more chemo treatments left!!!

Steroids and Sleep (or lack thereof)

I got into bed at 9:39, started reading, ended up finishing the book and falling asleep around 11:00, woke up a little after midnight, and here it is 2:10, and I'm blogging on my phone. (Tossing and turning gets so boring.)

Chemo days (Thursdays) totally screw up my sleep schedule. Before I get the chemo, I'm given tree pre-chemo drugs: Pepcid (because it's kind of harsh on the tummy), Benadryl (because it can often give people an allergic reaction) and a steroid (helps curb other side effects).  The Benadryl knocks me out for a few hours right after the treatment. All I want to do is sleep, but I can't because I'm working. Once that wears off, the steroids take over and I'm up, alive and peppy....for hours and hours.

Oh, I've tried taking something to help me sleep, and I try every Thursday night, but my brain could care less...it's in overdrive.  When I woke up tonight, it was due to one of my hot flashes and then things went downhill from there...

Covers thrown off
"Great, I'm awake already. Here we go again"
Hubby snoring
Dog snoring
Me not snoring
Hot flash over, covers back on
"So, what am I gonna do to with this? I still need to figure out what to do to make this experience into something positive. Probably shouldn't think about that now."
Small dog jumps on the bed and wants to cuddle.
Small dog is gassy
Small dog needs to get off the bed
Hot flash, covers off, flip to the cool side of the pillow

Think about Xander and school and what he has coming up
Hot flash over, cover up
Snuggle under covers and try to sleep
"He's the one who likes all our pretty songs/And he likes to sing along/And he likes to shoot his gun/But he knows not what it means/Knows not what it means, and I say"

All day...ALL DAY I've had this song stuck in my head.

Toss and turn
"Damn steroids"
Get kind of sleepy, but don't actually fall asleep, shift position again
Decide maybe I should try reading again. Remember I finished my book.
"This is ridiculous. I'm not gonna win."
Decide to peruse Twitter, Pinterest and Instagram.
"I'm so thankful for that Java monster in the fridge. I'm sooo gonna need it tomorrow."
Listen to my husband talk about something "in the darkness". Not at all freaky.
Shift position
Laugh to myself about how many things go through my head on these nights. Decide What the hell? and commence phone blogging.

Thankfully, I think my eyes are finally getting tired again. This is a good sign. Powering down to try this sleep thing again. 

Good night!

I hope.

Little Flashes from Hell

When the average person thinks of chemo, they think of hair loss, fatigue and nausea, right?  At least that's what I would think of, but then I never knew anyone going through it.  One side effect I had never heard of...hot flashes.  And why are there hot flashes, you might ask?  Well, because this chemo throws one's body into menopause.

Yes!  You heard (er...read) me right.  I'm a not-even-forty-year-old woman going through "the change". Isn't that so totally sexy?

It could be temporary, it could be permanent.  They don't know.  I'm guessing that because I'm going to be on hormone-targeting therapy for a few years after this, that chances are this will be permanent.  I kind of hope this is the case and I kind of don't.  I mean, I don't want to go through these damn hot flashes again.  Once is enough.  It just that it makes me feel completely unappealing to anyone of the opposite gender under the age of 65 and old.  Like Golden Girls old.

via thank-you-for-being-a-friend.tumblr.com

The hot flashes are an interesting sensation though if I stop to think about it.  It's like my body is ready to spontaneously combust, but stops right before I start to smolder.  The heat usually starts at the back of my neck and quickly spreads up my skull and down through the rest of my body.  The heat lasts about 2-5 minutes then starts to back off again.

It's not so bad when I'm at home and it's coolish and I can stick my head in front of a fan for a minute or if I happen to be outside in a breeze, but most of the flashes I get are when I'm in bed.  I spend a good chunk of the night throwing my covers off so I can sweat for a little while then bundling myself up again when it's subsided.  Doesn't make for very restful sleep.  It's also lots of fun when I get them in the office and there's not a dang thing I can do about it except grab the nearest file folder and start fanning myself with it.

All in all, I just have to deal with it.  The only way to make the hot flashes stop would be with hormones and considering the fact that my female hormones are what are fueling the cancer cells, thereby trying to kill me, this is a no-no.  I'll just buy myself a little fan to carry around with me and try to act all demure when I start temporarily sweating like crazy.

Uncomfortably Numb

Neuropathy. The one dreaded side effect of the taxol that I've been hoping to avoid, and thought maybe I had made it with only four weeks to go, but my body decided to betray me once again.

I think I've explained what neuropathy is in previous posts, (I honestly don't remember right now due to chemo brain and the fact that I no longer drink caffeine), but here's what the Mayo Clinic has to say:

Peripheral neuropathy, a result of nerve damage, often causes weakness, numbness and pain, usually in your hands and feet, but it may also occur in other areas of your body.People generally describe the pain of peripheral neuropathy as tingling or burning, while they may compare the loss of sensation to the feeling of wearing a thin stocking or glove.

Yay!

I had been having some numbness in my right thumb and index finger when I went to see the doctor on Thursday, but he attributed that to a pinched nerve since the neuropathy usually hits all the fingers and toes around the same time.  Apparently my body is very susceptible to the the power of suggestion (which I already knew) because yesterday morning I woke up and all my fingers and toes were a bit...tingly.

Well, tingly isn't really the right word for it.  More like...weird.  There's a bit of a pins and needles sensation when I put pressure on them, but usually it just feels like they're not feeling things the way they should be.  Ugh - I wish there was a better way to describe it so that you could understand it.  (I find myself saying this quite a bit these days.)

Oh well, I'm hoping that because this is starting so late into my schedule that I don't have enough treatments remaining to cause any permanent nerve damage and that this will fade away after chemo is over.