Scary as F***.

I’m getting tired, friends.

Treatments are going well.  The only major side-effects I am feeling from this round of chemo is being extra tired and everything I eat tasting like it’s been soaked in vegetable oil first.  Oh.  And dry eyes.  Lots of dry eyes.

Speaking of eyes, things are not going so well in that department.  I have completely lost vision in my left eye…well, there is a small bit of vision in my upper left peripheral, but it is not enough to count as vision, as all I see with it is if it’s light or dark.  Up until yesterday, my right eye was doing okay except for some floaties that settle in my field of vision making it difficult to focus.  Today I woke up, and my eyesight in my right eye is covered with a white haze. 

There is *still* no clear idea as to what damaged the retina in my left eye, or why it has continued to get worse, or if it is going to do the same thing to my right eye.  I have been tested for several viruses, bacteria’s, parasites, but everything keeps coming back negative. 

So. My doctor has me scheduled for a vitrectomy tomorrow afternoon, so he can collect a larger sample of vitreous fluid.  The hope is that with a larger sample, there would be a better chance of getting more accurate results.  According to him, the testing for some of these viruses and bugs are not that reliable, so a false negative result is common.  That said, I have been on a variety of medications; anitbiotics, antiviral, and antifungal.  Just to cover all the bases and see if something would work, but nothing has.  It’s only gotten worse and worse. 

One of the concerns is that it may be a CMV virus that is resistant to the antiviral meds I am taking.  If they find that virus in the vitreous fluid, a sensitivity test will be done to check for viral resistance to medication.  It would be EXTREMELY rare that would be the case, but it’s still a possibility.  

The other concern is making sure the same thing doesn’t happen to my right eye, which with this morning’s appearance of the white haze, has me nervous. Not knowing what is really going on and not knowing if anything is going to turn up in the tests they run as me a little ramped up in the brain. 

I really don’t know what to do, to be honest.  How to think, how to feel, what to expect.  I knew that dealing with cancer was going to be a pain in the ass, but I was prepared for that.  I am not quite as well prepared for this.  

And it’s scary as fuck.

Life Is But A Dream

Today was Taxol treatment numero tres (3).  So far so good.  This stuff isn't bothering me NEARLY as much as the A/C did.  Last week, day two is when the effects of the chemo hit.  When I woke up on Thursday morning I felt incredibly worn out.  Chemo brain was in full gear, so much so that I took my evening meds instead of my morning meds.  I heated up water for my tea in the microwave and found that I had forgotten to put water in the cup!  Yikes!!  Most of all, though, I felt incredibly tired, so I didn't do much of anything on Thursday except sit in my recliner and watch Judge Judy and the Olympics.  It was almost the same kind of feeling you get when you are first sick with a cold and your whole body goes into that "sick mode" of fatigue and general malaise.  That's how Thursday was.

From Friday on, I progressively felt better, and I did have at least a couple of days where I felt "normal" enough to do "normal" stuff. Like going to the grocery store or giving the bathroom a good scrub down and not feeling wiped out afterward.  It felt pretty damned good, to be honest.  I've spent so much time, the last couple of months, feeling "not normal" that I appreciate "normal" so much more now.  :)

Went to Green Bay again yesterday to follow-up with Dr. Shere.  What he told me this time is not a) what I expected to hear, and b) not what I wanted to hear.  He basically told me the tissue in my left eye, that is causing the visual obstruction, has been damaged and it is unlikely my full vision will return.  So that means the dark spots in my eye, that I can't see through, will not go away, and the dark shadow that blurs my peripheral vision and makes it even more difficult to see, will also not go away.  Well, shit.

I decided to look into a second opinion, so I called Mayo Clinic to get that ball rolling.  There are just so many unanswered questions, except for the fact that the chemo compromised my immune system that started WHATEVER is going on with my eyes.  Dr. Shere called me today to let me know he's really concerned about how thin my retina is in a couple of spots on both my eyes.  Apparently he is also concerned about the tear he "laser welded" on my first visit isn't going to hold, which could result in a detached retina.  So he wants to zap that eye a couple more times on Monday.  He's back to thinking it's a virus , something that most of us carry, but is usually kept in check by our immune system when we are healthy.  However, when your immune system isn't working right, and your body can't keep it in check, it can become active.  And it usually presents as issues in the eye.  And if not treated properly, well...it's not good.  So, I just feel I need a little more expert opinion on this whole situation.  Fortunately Dr. Shere is on board with that, and said a lot of good things about the specialist at Mayo Clinic.  His office has already sent the referral letter and my medical records to the Mayo Clinic Ophthalmology department, so I am just waiting for the information to be reviewed before they call me to set up an appointment.  Perhaps sometime next week.

I was having a conversation today with a friend of mine who had cancer and went through heavy chemo and even a stem cell treatment.  She talked about how she looks back at her time having cancer as sort of a dream.  I could relate, except I have that feeling now.  I just feel like this WHOLE situation has been so ridiculous, so far, with all these odd little things have have come up --- it HAS to be a dream!!  Right?!

*sigh*

I just don't know.  I hate having unanswered questions.  It drives me a little batty.  My Dad mentioned that because it's something that I can't control, it makes it that much more difficult to handle.  He's right.  I know I have a bit of a controlling nature.  Not real severe, but enough that I take comfort in knowing *I* have the control.  But there is NO CONTROL with cancer and all of its side adventures.  And that grinds my gears like you wouldn't believe.

All that said -- life isn't terrible.  I have a home, I have food, I have a good prognosis.  I have people in my life that I love dearly, and who love me back.  Frustrations, unanswered questions, and lack of control aside, I've got it pretty good for what is going on, and boy, I am so thankful for that.

Not getting all the answers...but still full of blessings.

It's hard to get all the answers when no one knows the all the questions.  

We went back to see Dr. Shere, my retina specialist, to see if the meds I am taking and/or the drops I am using is working at all.  After 6 days on a anti-viral medication, also 4 days on an antibiotic, along with Prednisone drops every hour while I am awake, you would think there would be a change.  Ha HA!!!  You would be wrong.  No change!

My titer for Toxoplasmosis came back negative, which is good.  Earline might not be trying to kill me.  Though there is another test I am waiting on, so it still might be her.  Dr. Shere did end up giving me an injection of Kenalog into my eyeball, and then because the pressure in my eyeball was too high, and I was totally blind in my left eye, he had to take a few ml of vitreous fluid back out of my eye to restore my sight.  What an odd experience.

Let me also say, you don't know terror until you are laying flat in an exam chair, your eyelids held open by some wire contraption, and your doctor standing over you with a needle in your eyeball.  He tells you to look straight ahead and DON'T MOVE, and now not moving all you can think of not doing, and it takes EVERY OUNCE OF RESTRAINT you have in your body to not move that eyeball the slightest.  There is a needle in it, after all.

I made it through.  I am off the Bactrin and have been prescribed Doxycycline to get a foot up if the Bartonella test comes back positive.  Still have to do the eye drops every hour while I am awake, so I set a timer on my phone to go off every hour.  I have learned that an hour doesn't last a very long time.

So, whatever is going on with my eye is still pretty much a mystery.  I asked Dr. Shere what if the Bartonella comes back negative, and he said "Then we just don't know.  Idiopathic.  No known cause," which is frustrating.  Perhaps for him as much as me.  The only thing we know for sure is that my immune system has been compromised because of the chemotherapy.  Hell, I was neutropenic half the time, so who knows where I could have picked up the bug that's messing with my eyeballs.  

I just hope that one of the handful of treatments I am on for this, works and heals my eye.  I pretty much only have peripheral vision in my left eye because of the position of the swollen optic nerve, which is obstructing the center of my field of vision.  However, whatever I can see in my peripheral is still obstructed by blurry vision and a dark shadow.  That is caused by the overall swelling and irritation of my eyeball.  

Anyway, chemo tomorrow.  I didn't get it last week because Dr. Siemers wanted to make sure my eye stuff wasn't related to the new chemo drug I am on (Taxol).  Dr. Shere said there was really no way to know if it was, so I guess if I go blind in the right eye too, we can explore that possibility a little further.

Back to Green Bay for a follow up with Dr. Shere a week from today.  Veruca has been packing on the miles these last few weeks.  Today we only went to Marinette, WI (har har), but our trip to Green Bay next Monday will make six trips we have taken in just over a months time.  Boy, I can't tell you how thankful I am that Gerry's job is so flexible.  He has been able to take every day off that I have needed him, either to drive me to chemo or to Green Bay. 

I really feel blessed that I have had it "so easy" in that regard.  I know there are other cancer patients who don't have the same, and I can only imagine the unnecessary stress it puts on an already sick person.  Those first several weeks of my chemo, I was so sick and felt so miserable, I don't know that I would have had the energy, or even the ambition, to worry about rides and what-not.  I think it is easily forgotten that not everyone has a readily available support system to help them through tough times.  If I am getting anything out of this cancer experience, it is how lucky I am that this happened when it did, and how blessed I am to have the support system I do.  It has also really made me think about those who don't; I often think about ways of how to correct that.

Most people wouldn't say cancer is a blessing, but I am going to say that, for me, it has been.  It has been made more than clear to me how much I am loved and valued.  I have always struggled with letting myself see that truth, because I always felt like I wasn't worth the time and effort.  But this experience has forced me to see it, and accept it.  It has been a very valuable lesson...and awakening...for me.

I am more blessed than I ever thought possible, and for that, I am so very, very grateful.

Peace and Love, my friends.

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 :)