Stupid Medical Crap

I'm so done with medical issues!  I had my annual ob-gyn appointment today.  Just routine.  Well, except that it is at last  year's appointment that I talked to her about the lump, and it was at last years appointment that she ordered the mammogram that resulted in the biopsy that happened a year ago today.  Yeah.  Except for that.

My gynecologist's office is down the hall from the cancer center.  This means that I entered the same building and took the same elevator to the same floor.  I was fine this morning, but by the time I got to the office and signed in, I was nervous as heck.  Stupid.

They called me back, I got changed into the gown, and I waited.  Forever.  When Dr. Finkle came in, she said, "So, how are you doing, really?"  That's when I broke down crying.  I'm so done.  I'm done with appointments, I'm done with poking and prodding, and I'm done with questions.  I love her dearly, and she's the reason that cancer didn't win.  I'm not mad at her, I'm just down.

So we talked and she wants to have me try Effexor, which should alleviate the hot flashes and help with anxiety at the same time.  I'm willing to try.  I've been a nightmare to my family for a while now.  Everyone that I know is on my last nerve.  The common denominator is me.  I hope it helps.  But we didn't get to complete that conversation, because that's when she started my exam by looking at my legs.

"Your legs are SO swollen?  How long have they been like that?  Why didn't you say anything?"  Umm, because it's no biggie to me compared to cancer?  Because I'm fat and I figured that was to blame?  Because I'm sick of reporting medical complications?  I don't KNOW!  She completed the exam and then looked at my legs again.  She said I wasn't leaving until she decided what she was going to do.

After getting dressed, I opened the door. She met me at the door and said, "I've decided how we're handling this."  It could be a blood clot, or a heart issue, or just fluid retention.  She ordered an immediate ultrasound of my legs to rule out clots and I headed downstairs to complete that.  My oncologist was not in the office, but she will call her and get me in sooner than my March 19th appointment.  She will let my oncologist decide where to send me to rule out heart issues.

The ultrasound showed no clots.  That was my biggest worry.  Those can mean instant death.  I have no blood clots.  PHEW!  I'll get a call tomorrow with information about what to do next.  Damn.  I'm SO sick of this stuff.  I was in a funk before this, and now I have to concentrate on not letting it pull me down further.  I have a great week ahead of me, and that's what I plan to concentrate on.

It's a Date!

I have a date for surgery!  May 23.  I have a surgery date on May 23.  I am ready for it to happen, and I'm glad to have a date.  I'm freaking out a bit, but not for any particular reason.  There have been many studies about PTSD after cancer.  I don't claim that label, but I sure know where they are coming from.  90% of the time, I am fine.  10% of the time, I'm a basket case.

Anyway, I have surgery in Shawnee Mission, Kansas on May 23, and will be back to work the following week.  Let's go.  I'm tired of waiting.  I keep chanting "May 23" because I'm happy to have a date.  Between now and then, I have many appointments.  There is one day in March that I have so many appointments that I had to take a vacation day!

Until May 23, I will just keep on keepin' on.  Wake up, walk the treadmill, shower, go to work, come home, watch TV, go to bed...rinse, repeat.  Just a few more months.

May 23.

Weekly Update

I suppose that is a fitting title, since it's been a week since I last posted.  It seems weird to say, but life is pretty much going on as normal.  I never thought I'd be so happy for a normal, boring, routine life.  I made it through a five-day week after 2 three-day weeks.  It seemed long, but we made it.

I have an appointment with my plastic surgeon on Wednesday morning.  It's the 2-month post radiation visit. He'll evaluate how hard it was on me.  I have some questions for him, too.  I think I'm going to have to see a physical therapist for my left arm, but I want his opinion before deciding.  I'm also hoping that he'll schedule surgery.  It'll be 4 months down the road, but I want a date to look forward to.

We're having our roof replaced, and they got partly done before a cold front and snow came through.  There is a tarp on my roof.  Anyone who has ever seen my crazy neighbor's house knows how I feel about that.  They're to be back to work tomorrow, though.  It should be done this week.  Here's hoping.

I caught some cold bug that was sticking around too long, and my oncologist thought I should see our family doctor.  I did, and he prescribed a Z pack for me to prevent it from turning into anything ugly.  I have been told that I'll have to be super careful about illness from now on.  I was NOT raised to go to a doctor for a cold, so I felt silly being there, but our family doctor agreed that I should be there.  I'm almost over whatever it was, finally.  Just a bit of a tickle left in my throat.

It's 8:00, and my body has decided that I should turn in.  I'm trying to listen to my body when it comes to how much sleep I need.  I push it a bit later on most Tuesdays to watch Parenthood, but sometimes I can't make it.  Thank goodness for DVR.  I hope my sleep patterns get back to a pre-chemo state, but it doesn't seem like it's moving that direction.  I know other ladies (who went through this journey at the same time as me) who cannot sleep more than a few hours at a time, though.  I am smart enough to be thankful for the sleep I get, no matter when I get it.

Goodnight!

Weekends, Appointments, and Eating Healthy

I feel like we've really made the most of this weekend.  I always like it when, as a weekend comes to a close, I can think of so many things that we accomplished.  Monica got her hair colored, we got groceries and Wal-Mart necessities, the house is clean, we visited my folks, and we got an estimate on fixing our roof.  PHEW!

I went to the radiologist on Friday.  Although I waited 17 minutes to spend 2 minutes and 20 seconds with him, it was a successful appointment.  I wanted to be all done with him, but he wants to see me one more time in six months.  Why?  I have no idea.  For the insurance money, probably.  He did seem quite pleasantly surprised by how good my skin looks.  You seriously can't even tell I ever had radiation.

Kevin and I jumped on the diet bandwagon.  We've done it before and we know what it takes.  Many people see an overweight person and assume that we just don't know how to eat healthy.   That's not true in the least.  We know how, we just don't do it.

Kevin is doing a low carb diet, but I can't do that.  That is too much meat for me.  I'm just cutting calories, exercising, and tracking everything on My Fitness Pal.  Although I've dieted successfully before, I feel a lot more resolve this time.  My chance of a recurrence of cancer drops significantly the healthier I am.  I don't ever want a repeat of this year.

Ever.

Getting On With My Life

Wow.  I haven't posted for a long time.  You're welcome.  Busy season at work and changing back to my regular hours has found me pretty dang tired by the time I get home.  Too tired to type?  OK, that sounds pretty lame, but I honestly get home and do next to nothing.

Last weekend, I decided I wanted to go to St. Louis to see my aunt Charlene and her husband Pat.  The last time we were there, we said we'd do it more often because it didn't take long to get there.  That was 2 years ago.  I told Kevin that I wasn't going to do that anymore.  A year of facing  your own mortality will make a person stop planning and start doing.  It was a fun trip, although far too short.  We're already talking about what we'll do the next time we go.

I found the suspicious lump in January and had a biopsy in February.  I was diagnosed in March and had surgery in April.  I got back to work in June.  I finished chemo on September 19th and finished radiation on November 14th.  I have follow up appointments happening now, but that's about it until the exchange surgery, which will be late May or early June.  I should be super excited that I'm completing treatment, and I am happy, but I'm constantly unsettled.

I think that treatment kept me occupied.  I was doing something.  I was actively fighting cancer.  Somehow it isn't as easy as it should be to accept, "OK.  You're all better.  Go on with your regularly scheduled life now."  Your brain doesn't work like that.  I want to ask, "So that's it?" but then again, I don't want to ask that at all.

My hair is finally growing back.  It's not as long as a crew cut yet, but it's moved from "fuzz" to "hair."  LOL  The gray is a lot easier to see right now, but that's what hair color is for.  I'm just looking forward to the day that I have to "fix my hair" to go somewhere.  Silly but true.

I know some people see a therapist after cancer treatment.  I've never considered myself the type to see someone like that, but I see why some do.  I'm not even saying that I won't.  I just haven't decided yet.  I'm fine most of the time, but not all the time.  I know I'll never be the same as before, but I'd like to get past the anxiety issues that sneak up on me at inopportune times.

It makes me VERY thankful for my Facebook group of friends who have gone through this with me.  We are small enough to have gotten to know each other, but big enough that someone is on pretty much 24/7.  If I can't sleep and it's 2 am and I feel the need to chat, someone is there.  Someone to listen to me whine, or laugh at my jokes, or commiserate about the state of our skin after radiation.  So far, that's all the therapy I need.

Overall, I am fine.  I have been cancer-free since surgery in April.  The chemo and radiation were both "just in case."  That is a lot of ammo to go through just because there "might be a burglar out there somewhere," but it's what was advised, so that's what I did.  And I'm fine.  2012 is a year that I'll be glad to put behind me, but I got through it.

What a Craptastic Day

Damn.  If there is truly something to the Monday curse, I found it today.  Everything I touched turned to crap.  Some of it was my fault, and some was just plain bad luck, wrong place-wrong time, or the mistake of someone else.

Natalie asked my dad if he'd take her to get her permit today.  He said he would, which took a load off us, and I made arrangements for the school to allow her to check out after first hour.  At that point, I waited to hear if she passed or not.  The next thing I know, she's trying to call me, but I was on my work phone.

The short version is that they got to the next town over for the test, and were told they needed her birth certificate.  DUH!  I knew that.  Well, I knew it two years ago, when Monica got hers.  I completely forgot to make sure she had the documents she needed.  I told her where she could find it, but she had NO idea what she was looking for, and wound up taking the hospital one, instead of the official one.

They found this out when they got to the next town over for the second time, and they still wouldn't let her take the test.  By this time, my dad is probably quite hacked off (and rightfully so) and Natalie is in tears.  Later, I found out that she also needs a bill or something to prove residency.  Remember, all of this is just a PART of the horrible Monday.

I got to radiation, and they got me back there right away.  Monday is Xray day, so I knew it would take a bit longer than other days.  No biggie.  When I lie down on that table, I am on my back, and I have to put my left arm behind my head, hanging onto this handle thing.  I must lie VERY still.  They reposition me the way they need me by pulling the sheet that I'm on, pushing me over, moving the table, etc.  I am NOT to "help" them move me in any way.  They even say, "Lay heavy" quite often.  It usually takes a couple of minutes to get me where they want me.  No biggie.

Today, it took them at LEAST 15 minutes to get me positioned properly, and they still didn't seem pleased with how things were going.  They kept moving me, moving the table, reading numbers to each other, moving me again, etc.  Finally, they took the Xrays, and then they moved me a bit more.  Finally, they did the radiation treatment.  I was lying perfectly still for 30 minutes instead of the typical 10.  When they announced I was done, my arm was dead weight.  Sound asleep.  So asleep that I had trouble getting dressed.

It woke up on the way back to work.  It woke up with an excruciating amount of pain.  My shoulder actually still hurts, but the rest of my arm is finally better.  They told me that they made a 5mm adjustment, and would take a couple more Xrays tomorrow, but that it is all normal and that is why they take them every week.  Umm, OK.  5mm seems like a LOT of adjustment for shooting radiation into my body, near my internal organs, but I'll trust the medical professionals.

Work didn't really go much better.  I know how to handle busy season, but I was filling in for someone else who was sick, plus trying to do my stuff, plus cleaning up several messes.  I got it done, but it sure made me crabby.  Those around me were having a similar day, so we all just did our best and powered through.  Tomorrow will be better.  I'm sure of it, and I plan to take that attitude in with me.

Now, if Natalie and my dad forgive me, I'm past the most bothersome part of my day.  The rest is just stuff.

Keepin' On

After tomorrow morning's treatment, I'll be 1/3 of the way through radiation.  I keep making little milestones like so it'll go faster.  It seems to be working.  I feel like this leg of my treatment is moving along more quickly.  It helps that I don't feel like crap for a week out of every two.  I often leave work, get half undressed, get radiated, get dressed, and get back to work, all within an hour.  The most it takes is an hour and 15 minutes.

I'm still not liking my radiology oncologist very well, but I'm hoping I'll change my mind about him.  I wait for 10 minutes for him to spend 30 seconds with me.  I had to find out online that I shouldn't wear deodorant, and when I asked his nurse about it, she confirmed that I should not.  Thanks.  That would have been good to know.  I can wear the organic stuff, though, so I bought some of that.

I have a little irritation on that side, but it feels more like the top of my rib cage than it does my skin.  I'll ask about that on Wednesday, but I don't expect him to have much to say about it.  He certainly doesn't spend the time and ask the questions like my medical oncologist does.  She even asks about my mental state and how I'm doing with working during treatment, etc.  Maybe she's spoiled me.

I get my port out on November 8.  I thought that was the day after my last treatment, but now that I'm checking the calendar, it's the Thursday before.  After I get it out, I have 4 more treatments.  They'll take it out during my office visit.  I find that odd.  I'll be glad to have rid of it, even though it really hasn't caused me any real problems.  It sometimes irritates me a bit, but from some horror stories I've heard, I've been quite fortunate.

I haven't gotten sick, even though I have no white cells fighting for me.  I've been pretty strict about avoiding sick people.  I noticed today that my eye was irritated, and by afternoon, it felt like I was getting a stye.  By the time we got home from mom's, the bump had developed.  Yup.  I have a stye.  I'm a bit concerned, since that's an infection, so I'll call my doctor's office tomorrow and ask them if I should just let it go (which I've always done in the past...styes take care of themselves in a few days) or if they want me to take antibiotic.

It was a good weekend, all in all.  I was happy to get to hang out at Dad's, see aunt Rena, and even visit a bit with a couple of uncles that I rarely see.  I've avoided Mom and Dad's place for two weeks, because Dad and aunt Rena had been sick.  They got better, so we got back to our weekend routine of going out there.

I feel pretty good, and from what I've heard and read, I'll keep getting better, bit by bit.  Although I'm really tired at the end of each day, and exhausted at the end of the week, it still beats the heck out of chemo.  There are times I feel almost normal.  My hair is slowly starting to grow, too.  it's just barely there right now, and it doesn't have any color yet, but I hope it will speed up soon.  I am also curious to see what color it is when the color returns.  I'm a walking science experiment.

Radiation

Wow.  I post that I got a new car, and then apparently drove off into the sunset in it, never to post to my blog again.  Or maybe I've been back to working full time, doing radiation treatments, and getting my social life back.  Boy, is it nice to accept dinner invitations again.

I started radiation on Monday.  I have a standing appointment at 8am every weekday.  On Monday, I left work too early because I didn't know how long it would take me to get there.  20 minutes is the most it takes, so I allow 30, in case there is traffic.  Yup, I'm driving straight into Kansas City during rush hour.  I haven't had any troubles, though.  Plus, I have an amazing new car to drive!

I got there Monday and they had to do some Xrays.  Because of this, I was there between 20 and 30 minutes.  I guess I'll get a couple Xrays every Monday, but not sure if it will take as long as the first time did. On Wednesdays, I will always have an appointment with my radiation oncologist.  I've found that I can leave work, go to the hospital, park the car, get to the radiation department, undress from the waist up, put on a gown, get radiation, change back into my clothes, and drive back to work....all in an hour.  40 minutes of that is driving!

Yes, it goes fast.  Those ladies know what they're doing, and they're super efficient.  It is a vulnerable feeling to be lying on that table in a big empty room while a machine shoots radiation into you, but there is no pain or discomfort of any kind involved.  They position me, leave the room, the machine does it's thing, and they reposition me again...three times total.

Most of the folks that I know who have had skin reactions do so around 4 weeks in or later.  I'm a week in right now.  I've done 5/33 treatments.  I have a ways to go.  A lot of them have been told to use a certain lotion or some such to the area from a week before starting to the end of radiation therapy.  I haven't been told to use anything.  Most people are told not to use antiperspirant, although some are allowed to use the organic kind.  I haven't been told either of these things.

My Wednesday appointment was a bit different because my Dr. was in a meeting that ran long.  He asked another doctor to see me so I didn't have to wait.  We were together about 90 seconds at most.  I have a couple of questions for this week (about the lotion and antiperspirant, etc.) but it still shouldn't take long.  I can't believe that the visits go that fast, but it makes it easier to keep up full time at work.

This Tuesday, I have an appointment with my medical oncologist as a follow-up to chemo.  I hope she tells me that I can stop being a germaphobe.  My father got sick at a MOST inopportune time, as I was just starting to feel like my old self!  I'm sure I'll be fine, but I want her to tell me so.  I do NOT want to wind up in the hospital again.

Wow, I get long winded when I wait a week to post.  That's all that is going on in the wonderful world of cancer.  I just keep moving forward.  What else can I do?  Move forward through treatment and move forward into our busy season at work.  I know I'm still supposed to rest when possible and not overdo it, so I'm being careful.  I'm just glad that, so far, I'm feeling a bit stronger each day.

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.  :)

Damn

The doctor was wrong.  I kinda figured this would be the case, but I had my hopes up to be the one who was wrong.  How often can you say that?  "Boy oh boy do I hope I'm wrong!"  The pain seemed to settle in a bit later, so by noon yesterday, I still had hope.  When I got home, though, I could tell it was getting worse and the football game was likely out of the question.

I took a pain pill and a nap, but when I woke up, it was even worse.  One more football game missed.  This morning, it's the worst it's ever been.  This time is different, though.  This time, I can chant "One more time.  One more time.  One more time."  I'm almost done.  This is the last time I have to feel this way.  By Tuesday or Wednesday, the pain will subside and then I get a month off.  A month of NO treatment of ANY kind.

After that month, radiation will likely start, but that'll be a cake-walk compared to this stupid Taxol.  It may make me tired.  Tired is something I can handle.  That's why they make coffee, I think.  Anyway, I'll know more about that plan on Monday.  Kevin will pick me up and we'll go for a consult with the radiology oncologist.  Then we'll know the plan.

For now, I'll sit right here.  I hurt, but I know it's going to end soon.  Somehow, that makes it better.  I've showered and moved to the recliner, so I am among the living.  This is likely the most activity I'll see today, though.  One more time.

Done With Chemo and the Laptop Screen is Fixed

With that title, who needs to type anything down here?  LOL  That pretty much says it all.

I had my final chemo today.  Kevin took a half-day off to come sit with me.  When I was done, I got to ring the bell.  They have a bell that you ring loudly when you are done.  I did that, smiling all the while, and then I got a certificate that all the nurses signed with a personal message.  It was SO sweet.  They said such nice things.  I am happy that it's done.  Now to get through a week of side effects (if the Dr. was correct, they won't be bad this time, though,) and I can feel normal for a few weeks before radiation starts.

Also, Kevin ran into the UPS guy at the post office this afternoon.  I had been tracking my laptop screen and knew he had it, so Kevin offered to save him a trip to our house.  Yup.  Saved him 3 whole blocks!  LOL  I got the screen replaced and am SO happy to be typing on a real keyboard again.  And now, a shameless plug:

If you ever break your laptop screen or need to replace it for any reason, I'd suggest screensurgeons.com.  I ordered late on Friday evening and the screen arrived today.  (Keep in mind that we live in the boonies.)  They have videos on YouTube, showing step by step instructions for replacing it.  When it got here, it has a letter stating that it has a 2 year warranty against dead pixels, lines, brightness issues, etc.

OK, that's enough of that unpaid commercial.  I'm  happy to have my laptop back.  I'm going to keep it in a different place, so my clumsiness will spare this screen.  I hope.

The stupid side effects are kicking in.  These side effects are from the pre-meds.  Benadryl has my head feeling swimmy and loopy, but I must fight sleep, because it also has a steroid that often makes me wake up by 2:00, unable to go back to sleep.  *sigh*

It's OK, though.  This is the LAST TIME I have to deal with this crap.  For the small time I sleep tonight, I will sleep happy.

Tired. You?

I don't want to sound ungrateful, hateful, or snippy for even a minute of this post, so if it comes across that way, I apologize in advance.  Several people a day ask me how I'm feeling.  The answer is always, "Tired."  The bone pain is gone and I haven't taken a pain pill since Monday.  I just can't bounce back from the fatigue this time.

I'm considering lying.  I could plaster on a fake smile and say, "I'm great!"  Nobody is making me feel like I need to do this, but I'm sick to death of hearing myself say I'm tired.  Almost as sick of saying I'm tired as I am of BEING tired.   Almost.

I am asleep, or at least horizontal, most every moment that I'm not at work.  That's why I'm not on Facebook much.  That's why I'm not blogging much.  I don't hurt right now and I'm not having any major issues.  I'm just tired, and I'm tired of being tired, and I'm tired of bitching about being tired of being tired.

How are you?

Tired

Well, unfortunately, I seem to be following the same pattern as last time.  That still doesn't mean it will be as bad, but if today is an indicator, things haven't changed much.

I started out fine.  It was actually a good day.  I felt fine and accomplished a lot.  Around 12:30, I started fading.  I had to stay at work until 2:30 because my appointment for my shot was at 3 and the Dr.'s office is between work and home.  I made it, but I was dragging butt by the time I left.

I got my shot (a 5 minute appointment) and headed home.  I got here, changed into shorts (oh yeah, have I mentioned our air conditioner isn't working?  Yay!) and collapsed int.he recliner.  I haven't moved since.  I am 100% out of energy.  This is day 2, which is the day that I fell asleep at 4:30 last time.  I've made it until 5, so that's an improvement.  LOL

My nurse advised me to take pain pills from the get-go tomorrow.  I'll have to start with Advil, so I can drive to work without the aid of narcotics.  We'll see if that helps head things off.  For now, I think I'll just sit here and see if a kid will bring me something to eat.

I'm Still Here

I've gotten ribbed a bit for letting so much time pass between blog posts.  In the past, that was reason for a sigh of relief.  Now, it leaves distant friends and relatives wondering if I'm OK.  I'm OK.  I'm here.  I don't want to do multiple "downer" posts in a row, so I just left the blog dormant this week.

Honestly, I started feeling better on Wednesday.   I called it "narcotic-free Wednesday" because it was the first day in five that I hadn't needed pain pills.  The debilitating pain was gone by then, but I was still so flipping exhausted.  When Kevin got home at 4:30 on Wednesday, I was already asleep.  I slept until 3.  On Thursday and Friday, I fought the urge to lie down by avoiding the bedroom.  LOL

Today, I feel all right.  I woke early and paid bills.  If you can do THAT and not become depressed, you're doing all right.  Not only are we having record-high electric bills, cancer treatment doesn't come cheap.  We've met our max out of pocket, but there are still payments being made from arrangements before we hit that max.  I can see the light at the end of the tunnel, but to think this is going to start over at the first of the year is sort of depressing.  Let's not think about that.

I've missed enough work lately that my paycheck was the smallest it's been since I returned to work.  It was 2/3 the usual amount, actually.  Thanks to Kevin's pay increases (yes, plural!) over the last couple of weeks, we still had enough to pay all of our bills that are due.  That made me so happy.  When I sat down with the bills and my computer and checkbook, I figured I'd have to juggle.  Nope!

Back to me, I'm going to milk this weekend for all it's worth.  I have chemo again on Wednesday, and if it follows the same timing, the bone pain will settle in on Friday.  I'll enjoy not hurting until then, and try to stay awake until the sun goes down at night.

But no promises on that last part.  :)

Brief Update (Complaint Warning)

When I finished the A/C portion of my chemo and started Taxol, I was under the impression that it would be easier.  I got my first infusion on Thursday, and felt pretty darned good.  Friday, I went to work, still feeling good and thought I had it made.

After work, I had to stop for my Neulasta shot (it brings up my white count and is always 24 hours after chemo) and noticed, by the time I got there, that I was VERY tired.  Oh well.  I felt enough better that I may have overdone things a bit, and the weekend was here for me to recover.
 
Saturday, I was shocked at how badly my bone hurt.  Traditionally, Neulasta causes bone pain, but it's been very predictable for me.  I get the shot on day 2, and have pretty rough bone pain for 1 or 1 1/2 days around day 6.  This was much worse, and much sooner, so I did some research and realized that Taxol causes bone and joint pain, too.  Great.

Sunday was even worse, and by the afternoon, a fever had joined the party.  WooFreakinHoo.  Kevin called the on-call doctor (why do I never get sick during office hours?) and she told him to give me Tylenol and see if that brings it down.  It was too early for me to be nutropenic (super-low whites, which hospitalized me last time) from the chemo, so she was willing to give it time to work itself out.

The Tylenol slowly brought down the fever, which had reached 101.8 at it's highest.  With the fever down, we avoided a trip to the ER and I was told to go get blood drawn this morning.  I woke feeling like I'd been drug behind a horse through the desert like in an old western, but showered and managed to get to the car.  It was one of the few times ever that I was sorry to drive a standard transmission.  My legs were screaming.

My blood counts were OK, but they drew a couple more vials to do some cultures on.  I was then told to go home and rest.  I did, which I will regret greatly on payday, but the four hour nap sided with the fact that I needed it.

The chemocare page on Taxol says that the pain duration should be "a few days."  I am truly hoping that means I'll be able to tell a marked difference in the morning.  I have pain pills, but I'd rather not take them at work unless I have to.  I'd also like to be able to walk without wincing (and sometimes crying.)  Mom made dinner for my family tonight, or it would have been ramen for sure.

Here's to a better tomorrow.

Awake. Again.

This morning I will go get blood drawn to see if my counts are back to normal.  I went to work yesterday, acting like I suffer from  mysophobia and avoiding direct contact with everyone.  I hope I'm back in normal range or I'll be cancelling my plastic surgeon appointment and likely postponing chemo this week.

I feel OK, although very tired.  That makes me wonder if I'm still low.  The other troubling fact is that a lot of side effects that we'd gotten rid of have returned.  I've had a headache every day for a week, I cannot sleep through the night (with OR without medication,) and I'm moody as all get-out.  We've also now added night sweats to the mix, so I'm a real bundle of fun.

I woke this morning at 1:45 and tried for 45 minutes to go back to sleep.  I finally gave up, ate a bowl of cereal, showered, and paid some bills.  Even if my blood counts are back to normal, I don't see me making it 8 hours at work today.  I hate to be negative, but since I'll be leaving for 2 hours for my appointment, I'd have to stay until 3:30 or so, and I'm not sure how well that will mix with waking so early.

I do have enough built-in paranoia from the last Dr visit that I'm packing a small bag.  LOL  Poor Kevin had to log about 150 miles last Tuesday because I was admitted into the hospital with nothing other than what I had on.  I am sure they won't admit me this time, even if my counts are low, because I don't have a fever or any other symptoms.  If for some reason they do, however, my glasses, contact case, and phone charger will be in the car.

OK, 4:00.  That means Kevin will be waking soon and I can quit being so quiet.  I'm ready for work, so I only have to kill another half hour before leaving.  Phew.  It's already been a long day.

Home

They released me on Friday morning, and Kevin came to get me and bring me home.  The only thing that really concerns me is that I have NO idea if my whites are still climbing.  I just have to assume that they are.  I am pretty much on lock-down for the weekend, avoiding public places and close contact.

Monday morning, I'll go back to work, still avoiding close contact until Tuesday's blood work gets drawn.  I had accrued 28 hours of vacation time toward next year, and that will cover most of the 4 days I missed while in the hospital.  I'm thankful that those were available, but a bit scared to have my safety net gone.  This simply cannot happen again.  No problem.

The worst part so far is that it seems that all of the side effects from early on are back.  I have a nearly constant headache, I can't sleep, and I'm emotional as hell.  I had a really bad headache last night, so I took what felt like enough pills to drop an elephant, and was back up at 1:30.  *sigh*  I had been sleeping fine for a couple of weeks (without pills) before this setback.

Basically, I think the quarantine has afforded me too much time to think.  When I go to work tomorrow, I'll be busy, and that will help.  My blood work is set for 3 in the afternoon on  Tuesday, but I may see if I can go early so I can wait for the results.  If my whites aren't back in the normal range of 4.0 - 11.0, I have to cancel my plastic surgeon's appointment and my chemo on Thursday will likely be postponed.

I would think, after over a week on antibiotics, my counts will be fine.  However, I would have thought they'd climb higher than .7 after 4 days on IV antibiotics.  They were .6 on Tuesday .5 on Wednesday, .43 on Thursday, and .7 on Friday.  They can't tell if that was a "trend" toward upward numbers, or just a fluctuation.  They let me come home, though, because there was nothing they were doing there that I cannot do at home.

I'm home.  I figured the "I'm home" post would be happy and fun.  Call it lack of sleep, the headache, or the whiny state I'm in, but I missed that goal by a long shot.  My feelings are hurt by the slightest little thing, I'm exhausted, but need to expend energy in order to get more sleep.  For the first time in my life, I'm in the middle of a weekend that seems to be going on too long.  Sorry, my working friends.  I know that comes as a betrayal to you all.  I promise to be crabby about Monday like the rest of you.

Staying Another Day? Picture Time!

Since I'm here for another day, we'll explore my little corner of this fine establishment. (click on any image to make it larger.)  The first thing I noticed was that the ceiling tile right in the middle of the room was painted.  Not painted with an uplifting message like your OB/GYN office.  Nope.  Not like that at all:

What the heck, you ask?  I have no idea, but those not-drawn-to-scale animals have been keeping me company.

That first night I was here, Monica came with Kevin when he brought me the necessities for my unplanned stay.  She looked at the wall and said, "Is this a Catholic hospital?"  I told her that it was, and asked what made her ask.  She said, "Because of that cross, and that looks like an old clock from a church."

They are neither centered on the wall, nor are they hanging straight.  And bless Monica's heart, I still don't see what is "Catholic" about that clock.

Another thing to consider, if you wonder what amazing things abound in this room, is this:

I have, at my disposal, 24 hours a day, 7 days a week, a VCR!  Don't go hatin'.  You can't all be me.

This is my view, which reveals another section of this enormous hospital:

There is nothing wrong with this.  The problem is that pterodactyls keep flying by the window, scaring the CRAP out of me.  OK, maybe they're pigeons, but they look HUGE out of the corner of my eye.  One actually hit the window earlier, and I nearly soiled the bed.  TMI?  Too late.  You can't un-read something.

Finally, the giant gift bag that was dropped off by a mystery delivery lady yesterday.  Kevin stopped by after work and added to the bounty.  Even after I indulged in a bit of sweet/salty last night (potato chips and chocolate could join forces to rule the world,) all of this is still left:

It has been quite handy to have these items at my disposal, since a few of my meal choices have been questionable at best.  Mmmm.  Junk food.

OK, here's to going home tomorrow.  Here's to higher white cell counts.  Here's to a decent night's sleep.  Here's to potato chips and chocolate!  Oops.  How'd that one get in there?

The First 24

The first 24 hours in the hospital has been interesting.  They are all very nice here.  I'm not used to being in the hospital, so it's weird, but fine.  The doctor offered me a sleeping pill last night, and I refused.  I've been sleeping fine lately.  Apparently that doesn't transfer to a hospital room.  LOL  She asked today if I regretted refusing it, and I admitted that I did.  I'll take one tonight.

The nighttime nurses are sweet and good at what they do.  I call them Nighttime Ninja Nurses.  The NNNs come in, work by only the light coming in from the hallway, and are back out within five minutes.  I barely knew what was going on before they were gone.

My bed has a problem that causes it to lock sometimes.  The buttons won't do ANYTHING.  The day nurse yesterday knew how to fix it, so she showed Kevin.  I didn't pay attention.  Guess how much good it did me?  This morning, a maintenance guy came in and asked about it.  He said that the beds are getting older and need new chips inside.  They've been ordered but aren't here yet.  Then, he took his fist and hit the control panel!  It fixed it right up.  I laughed and told him that I remember fixing our TV that way when I was a kid.  He said, "So do I.  That's what made me try it the first time."

I slept from 9:30ish until 11:30, 12ish until the NNNs came in at 2, and 2:30 until 3:45.  I called Kevin at 4 (he was already on his way to work, making up time that he missed yesterday, poor guy) and then I tried to go back to sleep.  I was finally successful around 5...and then my cell phone alarm went off at 5:30!  What an idiot!  I forgot that I have it set to go off each weekday at 5:30.  It has been turned off now, for sure!

I told a couple of friends, via Skype, that I wish I had some chips and chocolate.  This afternoon, the nurses aid came in carrying a bag with three small bags of chips and 4 kinds of chocolate in it!  It turns out that my friends do not know this delivery person, and neither do I.  It's a friend of a friend who happens to work here and hooked me up.  It's not who you know, it's who is known by whom you know.  Or something like that.

I've found that some of the food is quite good, and some is not great.  Most of it has been edible, though.  Except the tomato soup.  Ick.  Still, it's overall better than most people describe hospital food, so I'll not complain.  I can't imagine feeding this many people.  Plus, I'm a lot less picky than most.

At one point today, two doctors came in with two shadows.  Students, maybe?  Anyway, as the oncologist was telling me that my white cells had dropped again overnight (I know, I know.  *sigh*) and I'd be here at least through tomorrow, and possibly Friday, she said, "The good news is, you've been afebrile for 24 hours."  My hearing isn't great.  I hear things wrong a LOT.  What I *heard* is, "You've been senile for 24 hours."  Before I could process that enough to be offended, she added, "So as long as the fever doesn't come back..."  That's when I realized what she had said.  PHEW!

My final story is about how I'm introduced as shifts change.  Each nurse is telling the incoming nurse that I'm an ideal patient, or the best patient on the floor, etc, and that I never ring my call button.  That's true, I haven't needed to.  However, do you know what kind of pressure that puts on me?  Holy moly!  What if I need something?  I'll damage my reputation!  LOL   Yes.  I'll push the button if I need something, but I'm ambulatory, so there isn't much that I could need that I cannot get for myself.

A Change of Plans

I expected bone pain on Monday.  It's one of the joys of my chemo plan.  I get a Neulasta shot on the day after infusion, which helps my bones produce white cells more quickly.  The drawback is that I get bad bone pain (lower back, hips and legs) 3-4 days after the shot.  At least I can plan for it, which means that I knew Monday would be tough.

I made it until about 11 at work and decided to go home and try to get some work done from there.  On the way home, I started feeling overall yucky.  I wasn't even logged in to work before deciding that work wasn't going to happen just yet.  I needed a nap.  I felt like CRAP.  I told the girls that I was going to grab a nap, and went to bed around 1:30.

The next thing I remember, it was nearly 5 and Kevin was home from work.  I was chilling, had a splitting headache, and was overall miserable.  I took my temperature and it was 101.6.  We are to call the on-call doctor if it reaches 100.5, so I asked Kevin to call.  I could barely think, so I knew I wouldn't be able to make a coherent phone call.

She called in an antibiotic, which Kevin went to pick up for me.  She also told me to go in for blood work first thing this morning.  I woke with a temp under 100, so I figured I'd get blood drawn and then go in to work.  Wrong.

They drew blood from my port, drew blood from my arm, took a urine sample and took a chest X-ray.  I waited about an hour for the results, and knew they weren't good when my oncologist came in to deliver the news, instead of the nurse.  She told me that she doesn't like to see white counts under 2000, and mine were 700.  Paired with my fever the night before, she wanted to admit me.  *sigh*

A new problem developed when they found out that there were no beds at the hospital where I was.  I would have to go to the Kansas City location.  I called Kevin, who left work to come get me.  I was exhausted, still had a headache, and didn't feel up to the drive.   Plus, by this point, I was a little bit scared.  We finally headed out around noon, grabbed a bite to eat, and got to "the big hospital."  Seriously, one can easily get lost here.

By the time I was in a room, it was 2:00.  Kevin had to go home to get some necessities for me (I had no phone charger or computer or toothbrush, for heaven's sake!)  They accessed my port again, finally gave me some Tylenol for my headache, and I settled in.

From what they say, I'll be here a couple of days.  I have no fever, and my headache is down to a dull roar when on Tylenol.  I can count on one hand the number of times I've been in the hospital, so I'm not quite sure what to do here.  I guess I'll just do as they say, lie here, and build white blood cells.  Thank goodness for in-room internet.