Cats, Broken Eyeballs, and No Chemo! Oh My!

No chemo today.  I am having some possible viral issues with my left eye, so Dr. Seimers decided that until we know more about what is going on with my eye, we should hold off the chemo just to make sure it isn't related to the Taxol (chemo med).  I am heading down to Green Bay tomorrow to see the retina specialist there.  According to the opthamologist I saw yesterday, my optic nerve and retina are both swollen and inflamed.  The swelling of the optic nerve is causing a blind spot in my field of vision, and the swelling of my retina is causing a shadowy cloud, making it so that everything else in my field of vision is dark and blurry.  So, basically, my left eye is broken.  I woke up this morning around 3am in some pretty bad pain from it.  It feels swollen, and my eye was watering and I just wanted to tear it out of my head.  I popped a couple of Tylenol, though, and that helped.  In the meantime, I am on an antiviral medication 3x a day for the next 10 days, and I will probably end up with a couple of needles stuck in my eyeball tomorrow.  Loads of fun!!

With my extra free time this morning, I stopped in at Lowe's to pick up some ceiling hooks to hang my plants.  That way I don't have to hang them on the curtain rod any more.  I also picked up some suet cakes, and a brick of mealworm to hang in the backyard for my bird friends.  When I got home, I was all excited to fill the bird feeder and hang all their new treats, but when I stepped out on the back porch I realized the snow was nearly thigh high in the backyard!  I didn't feeling like wading through all of that, so the birds will have to wait until I feel more up to it.  Poor things.  I've been neglecting them this winter.

I found a temporary home for Miss Earline.  It really breaks my heart that I have to oust her like this.  But she may be the cause of my eye trouble.  So she's gotta go, to be safe.  The boyfriend of a friend of mine offered to take her in.  He has a cat already, but as Lilah said "She's old, fat, and lazy."  I know that after a couple of days, Miss Earline will warm up to Gray-C and they will be friends for the time she is there.  I am just thankful I was able to find someone to take her.

I got some good news today!!  Earlier this week I had been told my Short Term Disability claim had been denied because my employer had a "pre-existing condition" clause in the policy.  Since I just bought the policy, starting Jan 1 of this year, my claim was not eligible.  I was upset and wasn't sure what I was going to do.  Start a Go-Fund-Me??  Rely on my tax refund??  I decided to appeal it, so I called the agency that handles our disability claims, and spoke to the woman who had reviewed my case.  Before I even had a chance to ask her about appealing, she started apologizing and told me she had made a mistake.  She had been looking at the Short Term Disability policy for a different employer when she made her determination, which has the "pre-existing condition" clause.  MY employer DOES NOT have that clause, so that means my claim was actually APPROVED!!!  What a HUGE relief!

It's nice to get some good news amidst all of the crap that's been going down the last couple months.  Between eyeball troubles, lung clots, viral infections, and chemo side effects, it's been a rough ride.  I am looking forward to things improving, though.  I feel like they are.  I have to believe they are.  That's how you get yourself through difficult moments -- believing that thing will improve and get better.  There is just no other way.

Peace Out, my Friends!

Would you like to swing on a Star...

I started my new chemo treatment this past Wednesday.  Twelve weeks total of weekly treatments.  The Taxol is supposed to be less taxing on my system as the previous chemo treatment, so hopefully that means no more neutropenia and no more anemia.  What I have noticed with it is that I do have a bit of nausea first thing when I wake up.  Compazine helps with that, though.

I feel more like myself, though.  I'm still tired, and my energy levels aren't what they used to be, but I don't feel exhausted and I don't feel sick all the time.  I don't feel like I have to take naps throughout the day.  I don't feel like I need to run to the loo every hour to dry heave.  I don't feel like my body is broken and I'll never feel normal again.  I feel good, and that is a fantastic feeling.

In fact, Gerry and I went out for dinner the other night and I didn't get sick or have a near syncopal episode!  That's progress, people!!

With all this newfound "feeling better" I now can turn my focus on finishing up my classes from last semester that I had to take Incompletes in.  I finally have all the information from both the instructors on what assignments I need to complete, as well as exams and final projects.  I have until the middle of May (end of semester) to complete it all, though, so I will be fine. 

I was trying to get an appointment to Mayo clinic for a consultation in regards to discussing the mastectomy and reconstruction.  Found out I can't get that scheduled until 3-6 weeks after I complete my chemotherapy.  Not really sure why, so I'll probably give their breast clinic a call next week to see if they can give me more details on that.  I was hoping to have the consultation done prior to completing chemo so I could then I could have a game plan for after.  However, none of this has stuck to "my plan" so I really shouldn't be surprised that this hasn't either.

I actually have been thinking a lot about the mastectomy surgery lately.  Initially, when it came to light that I would need chemotherapy, deciding to have a mastectomy was an easy one.  Most people I talked to would even say "You are having a mastectomy, right?" expecting that is the obvious way to go.  However, the more I think about it, the less I am convinced that is what I want to do.  I will have had a total of 16 chemo treatments by the end of my run, and the chemo is supposed to eradicate the cancer.  Plus, I will be on a hormone treatment medication for 5 years that will work to reduce my chances of developing cancer again.  So, part of me is sort of thinking "Why" do I need to cut off my breasts?  I understand it reduces the chance of recurrence, but so far there are no other factors, that I don't have control over, that would put me at risk again.  I suppose, if my genetic testing shows otherwise, then that would be different.  However, at this point, based on what is known about breast cancer and how it tends to develop, my weight, eating habits and alcohol consumption all play a part in whether or not I will get it again.  Keeping all of those factors under control, along with the chemo and the medication, will reduce the chance of my getting breast cancer again. 

I think what has really gotten me thinking this way is the reality that I would be having a major surgery that would be removing a part of my body that identify with.  Not that I am saying that my breasts are who I am, but they are a part of who I am and, to be honest, the idea of having them removed and replaced unsettles me a bit.  I didn't think it would bother me, but it the more I think about it, the more I don't like the idea.   There is part of me that worried about being "deformed"...that my breasts will look like something from a freakshow.  I know that won't happen, but there is that concern.  I also worry about long term complications.  I don't want to have repeated surgeries because something isn't sitting right or something has gone wrong with an implant.  Of course, everything might just go smoothly and I'll never have anything to worry about, but I never thought I would have breast cancer either, so I am not counting on not having some sort of complication. 

I just don't know right now.  I am looking forward to the consultation with Mayo clinic so they can give me all the pros and cons so I can make a final informed decision.  Overall, I will be happy when ALL of this is done with.  The chemo, the cancer, the surgeries, etc.  I just want to get back to regular life and focus on getting through school and getting my degree so I can move forward with my life.
I'm kind of getting tired of having cancer be the focus of my everyday life, which it has been.  It's kind of frustrating at times because the focus of conversation that I have with people always centers around my cancer.  I know it's a big topic right now, so it's to be expected.  But it's getting old. 

I am hoping that because I am feeling better, I can sort of turn the change the focus of things.  I can work on school work, so there is that to talk about.  I can work on my crocheting projects, so there is that to talk about.  I can work on starting seeds for my garden this year, so there is that to talk about. 

I suppose it's all how I choose to look at things too.

Plugging along

Yesterday I had my last dose of the Adriamycin/Cytoxin chemo.  This is the heavy duty chemo that really knocks you on your arse, so I am glad I am through with that.  In two more weeks I'll be starting up with 12 weeks of Taxol, which I have been told is the "lighter" chemo.  I hope it is, because I have been through the wringer with this other stuff. 

Finally got all my Christmas decorations down last weekend. It took me two days and several breaks for me to get it all done, but my house is back to normal.  As much as I enjoy decorating for Christmas, it starts to become too much for even me.

I'm heading back to Green Bay on Tuesday of next week to have my eye looked at again.  I had an MRI done on Monday to see if there way any way to see if there was more going on with the lesion in my eyeball than what Dr. Shere can see with his exams.  Dr. Siemers did get copies of the MRI reports, and he said as far as he could tell they looked normal, but I don't think he really went over them that close since he didn't order them, so I will get more details nest week.  I am hoping that Dr. Shere will say I don't have to dilate my eye any more, because it's a real p.i.t.a.  I am pretty sure the inflammation of the uvea has cleared up.  I went without the dilating drops for one day so I could tell if the gray cloud was gone, which is seemed to be.  It was hard to tell if the cloud was gone with my eye dilated because my vision is all distorted from it.  So that is an improvement, which I do hope means I can stop taking the dilating drops. 

I've been off work since Wednesday of last week because I found out I was neutropenic again.  So I basically became a shut-in.  Stay away from people, and no work.   I hate that I have missed so much work because I was really hoping to be able to work as much as possible during my treatments.  I have been using intermittent FMLA but because I have exhausted my PTO/EIB, I don't get paid for those days missed.  So I have not been getting full paychecks, which hasn't been too much of an issue yet.  I need a regular income, though, so I have been thinking about applying for short term disability, which would pay 66% of my total income.  There is the chance that with this next round of chemo, I might be more able to work, which would be great.  However, I still wouldn't be able to get my full FTE in. So I am not sure what the better option would be....pass up the short term and hope that this chemo will allow me to work without too much issue, or take the Short Term Disability for as long as I can.  I need to make up my mind soon, though.  My FMLA runs out soon and that brings up a whole bunch of new headaches.

I am hoping that these next 12 treatments go by quickly.  I am ready to be done so I can focus on bigger and better things.  I'm getting tired of my cancer being the main focus, you know? 

One thing after another..

Last week I called my eye doctor because I woke up Wednesday morning with my right eye clouded over.  I could "see" but it was like through a fog.  A bit alarming, and I was fortunate that he had a cancellation that afternoon, so I was able to get in to see him right away.

I love my eye doctor.  He's such a laid back, easy going, easy to chat with kind of guy.  Even though he was concerned about what he had found (a lesion on my retina) and said he was going to refer me to a local Ophthalmologist, I wasn't freaked out or worried about it because he is such a calm personality.  I appreciate that.

So I went to see Dr. Winkler the next day.  He went through all the same exam as Dr. Webb, blinding me with bright lights, and dilating my eyes.  But he also was able to see what Dr. Webb had seen and he was concerned about it too.  He said it didn't look like a metastasis, which is good.  But it did resemble something called Acute Retinal Necrosis, which is about as good as it sounds.  It's related to the herpes virus, and isn't good to have, so he prescribed me some eye drops and a heavy duty anti-viral medication, and referred me to a specialist in Green Bay.

So Friday morning, our alarm went off at 4am, and we were in the truck by 5am to get to Green Bay for a 7:50am appointment.  I am so thankful Gerry is a confident, and skilled driver, because even in the truck with 4 wheel drive, I would have been driving at 40 mph from here to Iron Mountain.  The roads were just too touchy for me, but Gerry had it under control, and by the time we got to Iron Mountain the weather had cleared up and it was smooth sailing from there on out.

In fact, we ended up getting there an hour early, which was fine.  I was able to get checked in and they went over some of my medical history, so that was all done before meeting Dr. Shere.  More exams with super bright lights in my eyeballs and being dilated.  Eventually he said that he also didn't think it was a metastasis, still good news, but he wasn't convinced that it was ARN either.  However, even so, he wasn't comfortable not treating me as if it was, because if it is, it could result in some major damage to my right eye.  And nobody wants that.  He also found, in the course of his exam, that I had a tear on my retina.  No idea how that happened, but it needed to be repaired or I risked a detached retina, which isn't fun to deal with either.  So he tells me he is going to laser-weld that up, so it doesn't detach fully, and he also tells me he needs to take some fluid from my eyeball to have it tested in a lab for the possibility of a virus, and as a precaution, he's also going to inject a heavy duty medication into my eyeball to potentially kill any herpes virus that may be hanging out there.

All this is done with lazers and needles.

In my eye ball.

While I am awake.

WTF!!!

Understandably, I am nervous, but Dr. Shere is kind of a no nonsense kind of guy.  He doesn't have time for me to be all nervous nelly because he has a long line of other patients he has to see, so I need to put on my big girl pants and suck it up.  So I do, and it all turns out that it's not as bad as I thought it was going to be.  The lazer job took only a few seconds, and he was kind enough to use some numbing drops in my eyeball to help with any discomfort from the needles.  And there was some, but it wasn't painful. 

Of course, afterwards, my eyeball looked like someone had taken a baseball bat to it, being that the white of my eye was all bloody.  And my pupil is still dilated, so I look pretty frightening.  Enough to the point that Gerry was telling me to "point that thing in a different direction".  Ha ha.

So, I'm still on the heavy anti-viral meds, I am on prednisone drops for the uveitis (inflammation of the uvea) and I am on drops to keep my right eye dilated while things heal from the laser work.  Plus it's still bloody, so I am still scary looking.  It's a good time.

I've got to go back on Tuesday for him to check things out and get the results from the lab work on the vitreous fluid he took out of my eyeball.  I am honestly hoping it cam back positive for the virus and that we are on the right track for taking care of it.  At this point, I don't know that I want to deal with it being anything else. 

After my visit with Dr. Winkler last Thursday, I came home and all my energy was just drained out of me.  The idea of there being something major going on with my eye, the thought of having to drive all the way to Green Bay.  Just having something else to deal with besides my cancer.....it was just all too much, and I pretty much shut down for the rest of the evening on Thursday.

Fortunately, Gerry is super understanding, and just let me do what I needed to do, which was pretty much just sleep.  It's amazing to me how much different kinds of "news" can affect you physically and mentally and when it seems to be too much, your body just says "ENOUGH" and turns itself off for a bit.  That's how I felt Thursday evening.  Just like I needed to turn myself off for a bit and pretend that there wasn't anything going on in my life besides just wanting a nap at that moment. 

There was no cancer.  There was no eyeball mess.  There wasn't a "stable genius" in office threatening nuclear war.  Everything was going to be juuuuust fine.

The fact is, it will be.  And is.  I didn't end up working this weekend because I pretty much can't see out of my right eye right now, so I have spent my weekend making sure I am keeping up on my eye drops and anti-viral meds.   I was able to get some laundry done yesterday.  Will finish it up today.  Probably change the sheets on the bed.  I had a successful BM (TMI I know, but seriously...it's big news for me!).  I am thinking about trying to get some Christmas stuff put away. Maybe I'll see if I can muster up the energy to make some bread for tomorrow's chili I plan on making.

Life is always looking to throw curve balls, and I've been catching them for years.  Really, this is nothing new for me.  There is always some sort of a surprise that throws you off and forces you to do things differently.  I'm okay with that, though.  I'm not much of a book smart person, but man, have I learned a lot about life and how to always be prepared for something new to be thrown in the mix.  Always be ready for that change.  Always be ready to change course, because you have to. 

Just always be ready, even if you don't always know what for.

Peace, my friends :)

Chin Up Butter Cup

I figured it was time for an update since it's been so long.   I just haven't had the energy or motivation to keep up on this like I hoped I would, but I am having a good day, so I decided to seize the moment while I could.

Yesterday was my 3rd chemo treatment.  I am noticing a trend that the day after chemo I feel pretty darned good.  Almost like normal.  The day after is pretty close to that too, and then it kind of starts to go downhill from there.  

But today, I was able to go into Marquette for an appointment.  I walked around Vinnies and found a couple scarves and some new lamps for the living room.  Went to my appointment.  Came home, set up the new lamps, did some vacuuming, and tidied up up the kitchen and the living room.  It was good to feel productive instead of  feeling like a lump.  Between the chemo and the virus I picked up, I have just been so drained of any energy and it has SUCKED.  

So it feels good to feel good for a day or so.  

I have one more of the A/C dose of chemo left -- in two weeks -- and then I go to the weekly Taxol treatments which are supposed to be easier to manage.  I am looking forward to that.  I really feel that maybe if I hadn't picked up that virus after my first treatment I would have fared better the last few weeks, but there really is no way to know.  I am hoping to avoid anything more like that, because that is something I never want to go through again.  It was miserable.

BUT...I am doing my best to keep my optimism up.  I'm not going to say it's been easy, but I am trying.

There is a light at the end of the tunnel, and I am hoping that the weekly treatments will make the rest of the chemo time fly by.  Then there may be radiation, and finally the mastectomy and restoration (maybe -- still on the fence with that).  But there WILL be an end to all of this, and then I can turn my focus back on to finishing my schooling and getting my nursing degree and moving on with life!

My Hero

The past several days have not been good ones.  

Gerry got sick the night before my first chemo - cold shivers, hot sweats - and neither one of us thought to mention it to my oncologist when I went for my treatment last Monday.  So, I had my chemo and ended up picking up his sick, and this past week Gerry have been taking turns trying to out-sick each other with fevers, chills, muscle aches, nausea, etc.  

Well, I am pleased to say.  I won.  

You know.  

Because Cancer.

I ended up in the emergency department on Saturday after having spiked an early morning fever of 102.3.  

Of course, by the time either Gerry or myself were in the coherent position to get me to the hospital, I had managed to take a dose of motrin which brought my fever down.  However, blood tests at the hospital revealed that I am neutropenic so a handshake from a friendly old man or a hug from a snot nosed baby could potentially kill me.  Okay..maybe a tad dramatic, but still nothing you want to mess around with.

So they sent me home with a couple of heavy duty antibiotics and instructions to follow up with my oncologist on Monday for more blood work to see how the counts are by then.  

I haven't felt any better, since, really.

I'm still cycling through episodes of hot sweats, and cold chills.  So the furnace is up and down.  I'm whining for more blankets to be piled on me or to be pulled off.  I'm shooting off requests for hot chicken broth or tea, cold Vernors or popsicles.  

In my wake, I leave a trail of messes from dirty sweat soaked blankets, to dirty dishes, to lids I forgot to put back on food containers, or even food left out in our bacteria breeding kitchen overnight when  it should have been put away in the fridge.  

And aside from a couple of typical comical quips, Gerry has followed behind me making sure I was covered when I was cold.  Making sure my soda was cold when I was hot.  Putting away the things I left out.  Washing the loads and loads of laundry and dishes ALL THE WHILE HE HAS BEEN SICK TOO.

In between his shivering rounds under the piles of blankets, or moments of him stripping off sweaty clothes, his headaches, muscle aches, and achy aches, he has kept up with making sure everything around here didn't totally fall to shit.  Which is exactly what I would have done.  

Let everything fall to shit, that is.

Right now he is out at the grocery store, still feeling like crap himself, to pick up some yogurt and good bread so I can eat something.  Before he left, he bleached down the kitchen, stripped the bed, brought some dirty clothes to the basement, cuddled the cat, and asked if there was anything else I needed before he left.  

I said no, and then suddenly felt this OVERWHELMING wave of LOVE and GRATITUDE for this man who says he wants to spend the rest of his life with me.  

This man who, despite feeling like death himself, has still managed to take care of me when I needed it.  

I tried to tell him how thankful and appreciative I was of all he has done for me, and his response was typical Gerry.

"Shut. It."

But I am so VERY VERY thankful and appreciative that not only the Universe lined up our paths in a way so we would meet, but also because I get to BE LOVED by someone like him.

This shit is real, people!!  Amazing, wonderful, fantastical love is for real.  And I have it :)

So, Thank you Universe for one of the greatest gifts I could ever be gifted, but mostly Thank You Gerry for being the wonderful, caring, loving, gracious, fantastic man that you are.  

I am so very, very lucky.

I love you.

Treatment #1

Yesterday I had my first chemo treatment, and I will receive 15 more over the course of the next 20 weeks.

Although I had done a bunch of research on what to expect, and had even had a teaching session with the nurse last Friday, I was still nervous about what to expect.  Everyone reacts a little different. 

I know that I will lose my hair.  Likely sometime between my 2^nd and 3^rd treatment.

I can expect to feel lots of fatigue. 

Perhaps some nausea.

A change in appetite.

Food will start to taste funny.

I may develop mouth sores.

I may lose my fingernails and lose feeling in my fingertips.

I don’t like NOT KNOWING how things will be for me, though, and if there is ANY anxiety about any of the side effects, it’s mostly because I just don’t know what I will be experiencing.  So yesterday, when I went in for my first treatment I monitored how I felt throughout the three hours I was there. 

Chemo started out with the administration of five premedications over 45 minutes:

• ·         Ativan – helps with nausea/vomiting
• ·         Aloxi – helps with nausea/vomiting
• ·         Emend – helps with nausea/vomiting
• ·         Pepcid – for heartburn
• ·         Decadron – a steroid to help with inflammation

After the premeds were completed, I was then given my first chemo medication, Adriamycin a.k.a. The Red Devil.  This was a manually administered medication, pushed from two large syringes into the IV that was connected to my port, over the course of 15 minutes.  After that I was given the other chemo medication, Cytoxan, via an IV bag drip over the course of one hour. A quick flush of my port and removal of the Huber needle after that, and I was good to go. 

After my chemo, I had a Neulasta injector attached to my abdomen.  This is a medication that when administered, will stimulate my bone marrow to produce more white blood cells, to help keep my count up. When it is first applied, a needle injects a plastic cannula into my abdomen, and then after a period of 27 hours, it “turns on” again and administers the medication over a period of 45 minutes.  Fifteen minutes after that, I remove it and put it aside to dispose of back at the doctor’s office. 

I felt great after chemo.  No nausea, no fatigue.  Just my normal self.  My Dad, who drove up from lower Michigan on Sunday to surprise me, picked me up and we swung by Walgreens on our way home to pick up my prescriptions for some additional anti-nausea medications.  I was hungry when I got home, so I made myself a small salad with swiss cheese, ham, and balsamic vinaigrette dressing.  A few bites in to my salad my skin started crawling and I felt really jumpy.  I thought maybe it was a reaction to the Decadron.  I was warned that it might even keep me from being able to sleep that night, and steroids do tend to give people a sensation of having extra energy, so I thought that was what I was feeling.  However, shortly after the crawling sensation began, I suddenly felt really, really cold.  Hard shivers that made my muscles ache.  I managed to change into my thermals, flipped on the fireplace, and buried myself under a couple of warm blankets. I also took a couple of Motrin, and eventually the shivering settled down.  For the rest of the evening I cycled through feeling nauseous, hot flashes, feeling fine, but mostly feeling exhausted.  I am not totally convinced that all of what I was feeling was from the chemo, though.  Most of what I have read states that side effects really don’t show up until day three or four after chemo – after the chemo drugs have cycled through your body and have been excreted.  Gerry had not been feeling the greatest the couple of days before my treatment, and the night before he had the shivers and sweats, so I wonder if I was experiencing some of that.  So, still not sure what to expect, but I’m hoping it’s not too miserable.  If I could sleep through it all, that would be FANTASTIC!  I’m keeping my fingers crossed!!

Contrary to what the nurse said about the Decadron possibly keeping me up at night, I was in by 7:45pm and I am sure I was out by 7:50pm.  I slept pretty well, all things considered.  Up a couple of times to use the bathroom.  One of the things I was told was to make sure I empty my bladder as often as possible.  Both the chemo meds are excreted through urine within 48 hours, but because Cytoxan can break down the lining of the bladder, you are encouraged to urinate as often as possible to make sure it doesn’t sit in your bladder to long.

I did wake up at 3:00am this morning.  I tried getting back to sleep, but it just wasn’t happening, so I finally got up at 3:30 and settled myself in the recliner and did a little reading of different forums on Breast Cancer sites about side effects, good smoothie recipes, and whatever else I found interesting, from whatever other women who have gone through similar situations.

I made some toast, ate a banana, and when my dad woke up and joined me, I made us both coffee. 

I feel pretty good this morning, overall.  A little tired, maybe, but honestly that is not out of the ordinary for me.  I don’t remember the last time I didn’t feel tired.  Sometime before I had children, I am sure.

Before my Dad left back for Lower Michigan this morning, he made sure to remind me to not do anything too taxing.  “Energy reserving activities” was his suggestion, which I will have to make a point to listen to.  Though, after he left, I remembered it was garbage day today, so I rushed to get the trash and recycling bins out to the street, and I felt absolutely drained afterwards.  So yeah.  I must remember my energy levels are not where they normally would be, so taking it easy is a good idea.  That means I’ll be working on simple projects today; folding some laundry, taking naps, and crocheting some dishcloths. 

I am still nervous about what to expect over the next couple of days, but I am thankful for the resources I have available to me, and even more thankful for the people in my life who are willing to lend a hand should I need it.  I can’t even begin to express how wonderful it has been to have so many people, from my co-workers, to my instructors and classmates at Bay, and of course my family, who have all been willing to step in and help me in any way they can.  It has made this situation so much more manageable to handle, and I am so very, very thankful for it.

I really have so much to be thankful for.  I really am blessed.  More than I ever knew.