Cancer Effing Sucks

My echo cardiogram was as clear as every other test has been.  That was a relief, but still left a huge question mark over my head about how we were going to treat the swelling.  I finally met with my oncologist today.  My blood pressure was 150/100 *sigh* but the swelling is mostly gone.

She feels that the swelling and other side effects were direct results of the Tamoxifen.  The problem is that there is no other drug that is effective in pre-menopausal women.  Post-menopausal women have several to choose from.  This demands that we find out where I am in that respect.

Guys, stop reading now.  You're welcome.

I haven't had a period since June of '12, when I started chemo.  That's to be expected.  Starting Tamoxifen was expected to yield the same result, so no shocks there.  The problem is that it prevents us from counting on the obvious symptoms to know my menopausal status.  So they drew blood.  Mom?  This is where you remind me how old you were when you went through it.

For now, I am still off Tamoxifen.  I don't like that, since I want every weapon available to me in this fight, but I'll deal with it for three more weeks.  At that point, I'll go back to see the oncologist and see what my blood work revealed.  If I'm pre-menopausal, they'll likely give me an injection (or injections? I don't remember what she said) to stop my ovaries from working, throwing me into menopause.  Then I can start one of the many drugs aimed at that.

More waiting.  More unsettled worrying.  More and more proof that cancer effing sucks.  I suggest you avoid it.

1826 Pills

I had a follow-up with my oncologist today.  I was glad to have an appointment with a doctor, as weird as that sounds.  I feel like I spent all summer fighting cancer.  As soon as radiation was done, I started doing...nothing.  I feel like I've just stopped fighting it, and that makes me very uneasy.  I told her that, and she said that it is a very common feeling, and that I had to trust that we've done it.  Easier said than done.

I asked if she would please do a blood draw to make sure my whites had gotten back to normal levels.  I'm pretty sure they are, since I've had two colds and gotten rid of them both within three days, but I want to be sure.  She was very nice about it and told me that they would be happy to.  That means that I got to see Marie!  She's my favorite chemo nurse!  It was awesome to see her while feeling good, instead of in a chemo-induced stupor.  I'll get the results of the blood tests tomorrow.  ::fingers crossed::

I was also given the prescription for Tamoxifen.  Because my cancer was the type that feeds on estrogen, this is a medication that decreases the estrogen in my body.  I will take one pill per day for 5 years.  1825 pills.  Wait.  There is a leap-year in there.  1826 pills.  I hope that the side effects are minimal.

There is a chance, if I was perimenopausal, that this drug will push me into menopause.  Because of the "chemopause," (fake menopause brought on by chemotherapy,) I won't know for a while if this is the case.  Oh goodie.  More unknowns.  I do know that I'm sick of hot flashes and the most common side effect of Tamoxifen is hot flashes.  *sigh*

She was happy with my progress, and I am to go back and see her in three months.  After that, I'll likely see her every six months for the next five years.  I wish someone would do blood work or a scan and say, "Yes! You are cancer free!" but that isn't going to happen.  I just have to trust that it's gone.  I have to trust the doctors.  I have to trust the medication.  I have to trust the treatments.  I have to trust God.

I'm working on it.

That's a "Yes" on Radiation

As I figured, I'll be receiving radiation.  Kevin and I met with the radiology oncologist this afternoon to discuss things.  He's a likable guy who is good at explaining things in an easy-to-understand way.  The most common side effects are fatigue and a diminished appetite.  I can handle fatigue, and my back side can handle a diminished appetite.

Of course, he had to tell me of some more serious possible side effects.  They have to prepare you for anything, but I sure hate hearing those things.  The percentage of a chance of those were quite small, though.  I'll consider myself warned, but try not to think about them.
 
He actually had me go across the hall while we were there for a CT scan and tattoos.  The tattoos are slightly larger than the period at the end of this sentence, and there are two of them.  He'll now look over the scan, come up with a plan for me, and then the technician will call me to schedule it.

I've heard horror stories of people having to pay a co-pay with each daily visit (x38 visits...you do the math,) but that will not be the case with Saint Luke's.  That was nice to hear.  I will have to go to the plaza location for treatment, but that's not as big of a deal as those who live near me may think.  That location is less than 7 miles from work, so I'll just do morning appointments and then go straight to work.

If I understand what my medical oncologist told me at my last visit, I'll have a month between the end of chemo and the time that radiation starts.  That equals three glorious weeks of feeling normal.  I'm really looking forward to some happy weekends.  I miss going to mom and dad's to just sit and shoot the breeze.  I miss getting outside and enjoying this perfect weather.  I miss going to school functions.   Yeah.  I'm looking forward to a bit of normal, even if it's just a few weeks.

Today was excruciating, much like the weekend was, so I've taken some pain meds and plan to go to sleep early.  If history holds true, I'll feel a bit better tomorrow, and the pain will be mostly gone by Wednesday, needing only an occasional Tylenol or Advil.  After that, look out, world!  I'm already conniving to get Kevin to take me to meet up with some friends after work on Friday for a drink.  I am so excited to even be thinking about that!

Now, I have some nurses to email with questions.  *sigh*  I can't wait until cancer and treatment are not the only things I think of.  LOL  Oh, and staying awake until dark.  That'd be a nice change of pace, too.  :)

The Quest for Tasty Food

Although I didn't want food this morning, I woke up hungry.  I was determined to find something other than crackers to take my meds with.  I found a lone packet of instant oatmeal in the cabinet and decided that it may just do the trick.  It did!  It was actually tasty.  That gave me hope to start eating again today.

Kevin went outside at 8:00 to start mowing, knowing it was going to be miserable again.  By the time he mowed everything, did the weed-eating, and made the yard look civil again, it was nearly noon...and HOT.  He showered and headed to the store with Monica.  I feel bad, but absolutely everything seems to fall on him now.  He's been amazing about it, but I still feel guilt.

My main wish for his shopping trip was fruit.  I thought fruit sounded good, and we had some frozen mixed fruit that I had thawed, and ate a bit of it.  It was very good.  He hooked me up!  I still had a cantaloupe, and he brought home apples, kiwi, grapes and strawberries.  The girls and I just combined all of the above and enjoyed the heck out of it.  It tasted SO good.

The other thing that I ate today was cucumber sandwich.  I had eaten a cucumber (from mom's garden) earlier in the day and it tasted pretty good, so I asked Kevin to bring me some cream cheese and dry Italian dressing mix.  It is supposed to sit for 24 hours, but I made a sandwich as soon as I mixed it up, and it was good, too.

I still don't want foods that I normally like, but it is SO nice to have something other than soup and saltines.  Tomorrow, Kevin is going to grill some chicken for me.  I have to get some protein in, and that sounds bland enough that I can probably eat it.  I was told that my white counts being low would make me short of breath, and I've certainly been short of breath today.

All in all, thanks to Kevin, I've had a good day.  I managed to do laundry, taking 10 minutes to catch my breath each time I came up the stairs, but managing to feel like I've contributed, anyway.  I plan to get a good night's sleep, since tomorrow is "crash" day.  I really don't want to sleep all day, but if that's what it takes to be able to get to work on Monday, that's what I'll do.

I'm thankful she cut my steroids in half.  I think it's contributing to my tired/weak feeling, but it should make my crash less intense, and I'm still getting enough of them to not be nauseous.  This medication balancing act is such a joy.  I've taken more pills in the past three weeks than I've taken in the past three years.  No joke.

Goodbye Again, Appetite

Right on schedule, I want nothing to do with food.  *sigh*  I bugged out of work at 11:30 this morning, two hours earlier than I had planned, but I was feeling crappy.  I knew it was too early for my Neulasta shot, since it has to be 24 hours after chemo, so I stopped at Target.  I was about halfway through and got REALLY light headed.  That's when it hit me that I had ingested nothing other than Gatorade and water all day, and it was noon.

I went to the snack bar to see if there was anything there that I could force down, and they had a yogurt parfait.  I paid $2 for $.50 worth of yogurt, so I forced it down, and then regretted it.  It took care of the shaky feeling, but it sat on my stomach like a rock.

They got me in early for my shot (my initial appointment was for 4:00, but they took me at 1:15,) and I came home.  I haven't much left my bed since.  I did eat a few saltines to take my medicine, and at 6:30 I forced down some soup.

This is my bi-weekly whiny post, I suppose.  I've burned it up awfully early.  Didn't make it past day 2.  LOL

Chemo, Round Two

This time, I remembered to jot down the names of everything they give me in that IV.  I know they switch things out a lot, and I was mad at myself for not taking notes the first time.  I'll share what they are, but first I have to give a shout-out to my girls.

I went by myself this time, armed with computer, books, etc to occupy my time.  I fired up the computer, and within five minutes, Monica was sending a Skype request.  I accepted, and then laughed the remainder of my time there.  She started out by dancing for me.  She turned on music and just went to town, dancing and dancing longer than you can imagine.  The nurse got a big kick out of it, too.

Soon, Natalie joined her and they both danced.  We chatted and made bad jokes and laughed.  Monica even played her guitar and sang for me!  At one point, the nurse called another nurse to come watch.  They both laughed with us.  Later, she told me that she's been doing this for 23 years, and has never been serenaded before.  It really made the time fly by!

Now, back to all the IV bag swapping!  Here is the stuff that I currently get, every other Wednesday.  Bags 3, 5, and 7 are the same bag, they just switch to it between other stuff.  All of it goes through my port access, but the Adriamycin has to be done via syringe (slowly) and watched.  It's some bad-ass stuff.  Fun fact:  Makes me pee red, too.  TMI?  Sorry.  Too late.  Here goes:


Bag 1
Dexamethasone - Steroid
Famotidine -Nausea
Palonosetron - Nausea

Bag 2
Emend - Nausea

Bag 3
Saline

Bag 4
Adriamycin via syringe (2) - Chemo

Bag 5
Saline

Bag 6
Cytoxan - Chemo

Bag 7
Saline

This is Getting Ridiculous

I've officially had a headache for nine days in a row.  I don't have it all day, but it lingers around for most of the day.  I'm keeping a "chemo diary" of sorts, so I can track trends and watch for side effects.  That's how I noticed that I have had a headache since June 17th.  That's the first time it was noted in those notes.  I'm a little slow at connecting dots sometimes, so it wasn't until the past 5 days that I've really been trying to figure out what is triggering the dang things.

I thought I may have cut caffeine too quickly, so I added some back.  It's not caffeine.  I thought it might be from one of my medications, but I haven't taken any medications in over a week.  It's not medication.  I thought that it may have something to do with lack of sleep, but I've been taking a sleep aid two out of three days, and am now getting plenty of sleep on those nights.  It's not lack of sleep.

I started noticing, over the past five days or so that I don't usually wake up with it.  Maybe I have NEVER had it first thing in the morning, but I'm slow to connect the dots (or sometimes even recognize the dots,) remember?

So I've been pouring over my short-hand type notes, and trying to figure it out.  I noticed that I got it not long after eating a square of lasagna yesterday.  Kevin and I discussed that it could be cheese or some component in that dish, so I decided to note what I have recently eaten when this stupid headache shows up.

This morning I had no headache.  I always feel so good as I head out to work!  Plenty of energy and no headache.  When I got there, I put in a couple of hours and decided I was hungry.  I ate some cantaloupe that I had cut up and brought along, as well as a trail mix granola bar.  Not even ten minutes had passed before my head started to ache.

The headache was still there at lunch time, so I thought, "In for a penny, in for a pound!" and ate my leftovers.  By the time I hit the eight hour mark, I couldn't take any more and I headed home.  I've been in bed since I got here, wishing my head would just STOP already.

My final observation is that my head didn't hurt while I had all the other side effects.  Remember what I ate during that time?  Nothing, unless I forced down chicken noodle soup or mac-n-cheese.  Bland foods.  I'm now wondering if it will stop hurting if I switch back to only bland things.  That will be the next thing I try, if left to my own devices.

I hope that I won't be, though.  I have an appointment with my oncologist tomorrow morning.  I'm going to talk this out with her and see if she has any ideas.  A week or so ago, I joked, "Well, at least I only have to deal with this for 16 weeks."  It's not funny anymore.  I can't do this for (now) 14 more weeks.  Most days, I would rate the pain at a three or four on the 1-10 pain scale.  Today's was easily an eight or nine.

Nope.  I can't do this.  Well, let me correct that statement.  If I had a choice, I would say that about breast cancer.  "I can't do this."  However, I can do this, and I am doing it.  If I find no relief, I guess I'll have no more say about the headache than I do about cancer.  However, as amazing as my health care providers have done in preventing or minimizing side effects, I'm sure they'll have something I can try.

Saturday 'N Stuff

Yesterday sucked pretty bad.  I hurt all day, and even had to break out the hard-core meds.  (I haven't taken stronger than Tylenol or Advil for over a week.)  It was depressing to feel like I was going backwards as far as healing.  I don't know why it happened or if I did something to cause it or if it was a reminder that I'm not 100%, but it sucked.

My buddy Susie sent an amazing fleece blanket to me that she tied, to take to treatments.  I got it at work yesterday.  I really needed a good surprise, so her timing was impeccable.  Made me get teary and girly at work, but I blamed the meds.  :)  On Kevin's way home, he picked up Kameron.

Talk about the fountain of youth!  Even sitting here feeling crappy was easier, just watching and chatting with her.  She's so animated and funny.  The girls took her up to the fair for a bit to scope things out for today.  We'll go up and let her play some games this morning, come home for a nap, and then get a wrist band for her to ride for a few hours tonight.  (She's already informed me which horse she'll ride on the carousel.  Now THAT is planning ahead.)

I slept in the recliner last night, and I think it helped.  I'll know for sure after a hot shower and some coffee.  That's my usual morning medication, and it's usually enough.  Here's hopin'!  I am in desperate need of a real good weekend, and I'll do everything in my power to make it so.  Who could be down and discouraged with the town fair going on???  Not me!

A Good Day

I DID have a good day today.  I overdid it in the heat, I think, but I had fun.  I felt nearly normal again...maybe even better than yesterday.  I asked my buddy Tammy if she'd like to get lunch or something, and she was game (as was her hubby Greg.)  They had some things to take care of first, and then I met them at their house, and showed Tammy and her daughter Brooke WAY more than they thought they'd see today.  (They wanted to see, so I showed them!)

Then, Tammy and I piled into Greg's truck and headed out for lunch.  We went to Texas Roadhouse and I ate like an idiot.  I was SO hungry.  I really ate too much.  I had chicken fried steak, sweet potato, salad and a beer, and it took four hours before I recovered.  So.Full.  We also had a good time laughing and I made Tammy cry (it was a good one, though) and she had Greg take us to a store I'd never heard of.

It had some cool stuff, and I'd be happy to tell you the name of it, if I remembered.  Let's just say it's that store beside the other store in that place with all the new stores.  In that one town.  West of here.  You know the place.

All in all, it was a fun day.  Driving home during the hottest part of the day with no a/c in the car is probably what did me in, but sitting in the a/c at home with a fan pointed at my recliner has me feeling good again.  I could go to sleep now, but I'm waiting a bit longer.  I have to keep a more regular schedule now that I'm back to work.

It feels SO good to feel so good.  Tiny, manageable aches and pains, but who doesn't have those?  I do find that, if I sleep in my bed at all, I wake up with my back screaming.  I spent 6 weeks sleeping in the recliner, and I have to ease back into sleeping in a real bed.  Weird huh?  Still, once I'm up and showered and moving, I feel normal.  Two days in a row!  Even better, no breakdown tonight!

Oh, and to answer some questions from comments:

• I have been researching the heck out of all the medications that are in my regimen.  I know the side effects, common and rare.  I'm ready.  *sigh*
• I have the numbing stuff to put over the port site, and plan to use it.  They accessed it once already to take blood, and it didn't hurt at all, and that was without the cream, so I don't expect problems that way.
• I will get anti-nausea meds prescribed, and maybe during treatment if necessary.  Everyone reacts differently to chemo, so until I've had that first treatment, we won't know what's necessary for me, but we'll be fully prepare for any of it.
• Yes, I know it's healthy to let myself cry.  I just am making sure that I don't slip into a funk.  I will allow myself short bursts of waah, but I will NOT let them become the norm.
• I appreciate the prayers and kind words.  They mean the world to me right now.  Thank you. 

Sunday Morning

I am supposed to have my head elevated 30° while in bed, and the drains come out the left side (my preferred side to sleep on) and I was struggling to find a position conducive to both healing and sleep.  Yesterday afternoon, Kevin suggested that I sleep in the recliner.  I've taken many weekend naps there, so I know it was possible and said I'd give it a try.

This also put Kevin in our bed, instead of the guest bed, and it put his mom Linda in the guest bed, instead of on the couch.   I slept amazingly well.  I woke up for a restroom trip around 2, but went right back to sleep with no problems, discomfort, or medication.

This morning I took the prescribed medication and passed out for a couple of hours.  I think it's time to try cutting the Percoset  in half again.  LOL  A coma was NOT the plan.  After I woke up, Grammy (Linda) made a bacon, egg, and cheese croissant. I have to say that the service in this establishment is ★★★★★.  I highly recommend it if you find yourself in town post-mastectomy.

I'm ready to settle in and watch the NASCAR festivities, knowing that many of my friends are right there at Kansas Speedway.  I'll see if I can spot them.  If not, maybe I'll lie and say I did.  :)

Ups and Downs and a Lot of Love

The amount of love my family and I have felt throughout all of this cancer nonsense is amazing.  From comments on here and on Facebook, to prayers being offered up from literally all over the country, to straight up cash.  My BFF Tammy had a garage sale today, taking donations on my behalf, and gave Kevin a chunk of the proceeds when he stopped by earlier this afternoon.  Before he got home, she called to let him know there was nearly $100 more.

What a blessing this is.  I have already wracked up more than 500 miles in visits to various doctors and many of the items I need for my post-op care are not covered on my Flex spending card through work (because they don't require a prescription) and the little things add up fast.  I am blown away that Tammy and Greg would go to all of this work, and that people who do not know me would donate items for us.  I don't know what to say.

I tried to cut down to one pain pill for a couple of doses, and have regretted it each time.  I figured the Valium was the most important, since most of the pain is a result of the stretching muscle from the tissue expander.  However, those times where I've cut the pain meds in half have left me in tears.  We'll give it the rest of the weekend before we do THAT again.

Kevin's mom is here and helping a great deal.  She takes some worries and chores off me AND Kevin. It's nice to have another resource.  I think she's headed home tomorrow, and Kevin is heading back to work on Monday.  That gives me today and tomorrow to figure out what I can and cannot do by myself.

I was hoping to be able to shower alone, but there are some things that need done around the drain tubes that I cannot reach (sorry for the TMI) so I'll be waiting for him to come home. If I get very desperate for a shower, I'll call and ask Mom to come.  I've pretty much lost all modesty over the past few days.

Got a question?  I'll answer.  Wanna see a picture of something?  I'll email you.  I'm not even kidding.  I've shown a few.  It's pretty amazing stuff, really.  Gross to think about, but amazing as far as how things work.  I cannot WAIT to gain my independence back, but I may as well educate folks about cancer treatment in the mean time, right?

LOL  Can you tell I'm feeling good right now?  That was a long entry!